Sammy the Boy

Merry Christmas to all!

2011-12-22T13:03:00.000-08:00

I'm happy to say that the reason I haven't posted lately is because things have been going so well. Sam is having a good year at school, thanks to some new-found diligence on our part (it's too easy to become complacent when things are going fairly smoothly. You tend to let some things slide that maybe should be paid more close attention to) Anyway, I'm thankful not to have to be reliving the stress of last year at this time. Sam's anxiety level is pretty low at the moment- he's handling stresses better, coping with disappointments well, and is doing better in social situations.

My stress level, however, is about to go up. The BIG decision about middle school placement is just over the horizon in January and February. A lot riding on this one. Keep him in a program where he gets lots of support, behavior management, and sensory integration, BUT may not teach him up to grade level, ruining his chances at a regent diploma and college? Put him in a new program that may get him up to grade level, increase the expectations for academics, and integrate him more fully with "typical" peers, BUT probably offer minimal support from untrained aides who don't get it or him? Give him drugs that MAY allow him to focus better, but first mess around with dosages so he feels like shit, sleeps badly, and produces god only knows what other side effects?

If there's one thing I hate about the autism diagnosis, it's that "trial and error" kind of mentality about interventions. I know all kids are different and what works for one may not work for others, but I can't stand the whole "Let's-try-this-and-see-if-it-works-and-then-if-it-doesn't-we'll-try-something-else" Makes me feel as if my kid is being used as test case for someone's research project. Once the project is done, the report is submitted, and the person who did it gets their grade, but I'm still stuck with figuring out my kid's future. I bet parents of NT kids don't go through this with the transition to middle school. I bet they just go from one school building to the next one, in the same town, with many of the same students. What a concept!! I bet they don't have to traipse from one classroom to the next, from one town to the next, comparing programs, facilities, teachers and therapists who may or may not be there next year, consider how long the bus ride will be, or whether their child will have support to help them be organized, make friends, handle assignments, etc. No, the neuro-typical school experience is one this family will never have.

I had one of those really pleasant conversations today (in the midst of a school xmas party, no less) with a social worker who, for the umpteenth time, had to tell me that Sam would really benefit from ADHD drugs- and that I should just ask so-and-so's parents who were also against drugging their child, but who is doing miraculously well now that he's on them. No one ever wants to tell you there is a down side, or what happens when meds DON'T work. I'd be curious to hear from people who tried but saw no improvement, but no one talks about that.

Sam learns differently and at a different pace than other kids. Isn't there anyone out there who can just teach him in an effective way, and leave all the baggage at the door? He can't help the way he is, but somehow I can't help but feel that we are constantly being blamed for how he functions. In schools, everyone has to learn the same way, and those that don't, get "special ed". Unfortunately, all those in special ed have to learn the same way, too. It sucks. If you are in special ed, you must not be smart enough to want a college education- those things should not matter. If you can't hack a classroom with 25+ kids in it, you must be a freak. Unfortunately, the things we want for Sam don't fit into either near little public school package. What's wrong with public schools that they can't get the job done for us? We pay enough taxes in this legendary fiscally wasteful state!

What was that I just wrote about my stress level "about" to go up? I think it already has, thanks to all the "educators" out there. Merry Christmas to you, too!

Trying not to let stress get to me.....

2011-03-28T17:35:00.001-07:00

Here we are again, my most favorite time of the year- annual review time! I know I've written about the joys of this yearly ritual before, but it's a topic that never seems to get any LESS stressful, at least for me. Even in years when things have seemed like they were going to be a cakewalk, I manage to squeeze some worry time in, and this year is no exception. There's something particularly galling about having to annually review a process that most parents of kids in school take for granted. It's almost like a punishment you have to go through for having a child with a disability. The chance to sit around a table with people just itching to prove you wrong, to make you feel like you know nothing or that your child is costing the taxpayers money is just priceless. For those of you who have never had the "wonderful" experience of an annual review, let me enlighten you. It's the time of year when you have to face the school district administration (you know, the ones who sit behind desks and maybe have seen your child once or twice, but who really only know him as a name on paper. Geez, I know some of the ancestors I research for people's genealogy better, and they are dead!!) and justify just why your child needs to be in a special program, needs to continue speech therapy, needs sensory integration therapy, needs a one on one aide, needs any extra help at all, just because he has a (insert GASP here) diagnosis!! So in other words you sit at a meeting and spell out just how horrible your child is doing so any services he receives can be justified. The first couple of times I was subjected to this abuse, I found it pretty tough to take. School is supposed to be about success, right? No child left behind, right? WRONG!! Luckily over the years I've developed a pretty thick skin and have learned that to play the game and win (well, winning is a relative term here), you have to make your child look as bad as possible. I never thought I would be able to point out my son's difficulties and not burst into tears over it, but practice does make perfect. If you don't make your child's "issues" seem bad enough, they are in danger of having their services taken away, or, worse, being "declassified". I'll never forget when this was suggested in the case of the son of a friend of mine, also an Aspie. His father wanted to ask the powers that be within the school, "Does that mean he's cured?" As if the schools could ever take credit for something like that! Our rendezvous with the school, teachers and therapists is scheduled for next week. We have been luckier than most, the staff who works with Sam usually runs the meeting and holds our hand through it. However, we have questions for them as well. Why are his state test scores so low? Why is he not performing at grade level? WHY DID WE HAVE TO WAIT ALMOST A WHOLE YEAR TO FIND THIS OUT? Clearly, the system is breaking down somewhere! A valuable lesson that I've learned through all this that keeps appearing over and over and also keeps proving its validity is that there is no one who truly cares for your child as much as a parent does. A mom or a dad is without a doubt the best advocate for their child. Teachers, therapists and administrators may talk a good game, but in the end they are doing a job, and it's not the important job that you have as a parent.

Cabin Fever- can it be a good thing?

2011-02-07T12:09:00.000-08:00

This is the time of year that's usually marked by the planning of vacations, gazing longingly at seed catalogs, counting off the days until spring. This year's cabin fever has been especially intense due to the unending snow storms we've been getting and nearly weekly snow days. I'm here to say that although I'm experiencing the usual cabin fever that takes over my life this time of year, I'm also kind of enjoying it.
That's mostly because Sam's in a really good place right now, and I can't help but think a lot of it has to do with our slower (sometimes even non-existent) pace. Since returning to school after the holidays, Sam's anxiety level seems to have diminished significantly. Reports from school are good, he's been mainstreamed into a 4th grade reading class which he is enthusiastic about and enjoying, for the most part he's cooperative and enjoyable to be around at home.
Since before Christmas I've been in a kind of anti-social funk. I haven't wanted to make the effort to get people together mainly because I sometimes feel like I'm ALWAYS the organizer. Of course if I sit around and wait for others to contact me and make a plan, I may as well resign myself to the fact that I'll probably be sitting for awhile. Honestly, these days that's ok with me. I'm seeing the positive results that not always being on the run is having on my family, and that makes me happy.
I've been following Sam's lead too. At this point he doesn't seem desperate for friends or social interactions. I wait for him to bring it up. We still do game club, just not as often. He's cultivating friendships with Jory from swimming and Kailin, the daughter of a guy Tom works with. Any encounters he's had lately have been quite positive and successful. We're not pushing them- maybe that's why.
I can imagine it must be exhausting to exist in a world where you don't get the rules and don't understand why people act as they do. Probably a lot like living amongst people who don't speak the same language you do. To put yourself out there in that uncomfortable situation must take a lot of effort, and would certainly not be something you'd want to do every day. Maybe cabin fever is providing us with an excuse for keeping close to home, being where we are comfortable and can just "be". Maybe it's like a recharging time, when we can save our energy up to go out and face the world- me to once again organize my social calendar, and Sam to be able to interact socially and have it be a positive experience. I've always known that being overscheduled made me miserable, so maybe now I've taken it one step further, or lower, however you want to picture it.
I am looking forward to spring, but I hope we can experience it and the rest of the year at our snail's pace.

The Post-Holiday Blues

2011-01-02T12:58:00.000-08:00

I've never been one to experience a let down after the holidays are over. This goes back to my days of working in the photo industry, when the weeks before Christmas were consumed with hours of toiling over a hot photo processor. The one thing January always meant to me was a break!! Nowadays, the holidays can be somewhat difficult for our family due to the drastic changes in routine, the inevitable fatigue, high expectations, and unfamiliar circumstances we sometimes find ourselves in. January, once again, seems a month of refuge and return to "normalcy". Today as I'm taking the decorations off my Christmas tree, I'm reflecting a little bit on holidays past, and the things that have changed over the years.

For Christmas this year, I surprised Tom with getting our old 8mm tapes transferred to DVDs. Most of them were taken during Sam's early years- everything from his birth to preschool graduation. I wondered how I would react emotionally to viewing those moments before we knew anything was "wrong". Back when I felt like any other new parent- I thought my son was the most brilliant creature who ever lived. There was video of him counting before he was two and reciting ABC's at age 3. I know I used to think he was gifted when he sounded out his first word at age 3 and could read during his second year of preschool. Then came the diagnosticians, the therapists, the therapists and the administrators. Somewhere along the way I allowed them to collectively squash the hopes and dreams I had for my kid. Somewhere along the way I started to buy into the whole "disability" drama, and see him through the clouded haze that they saw him through. The problems became the focus. I no longer saw that beautiful, brilliant, curly haired boy who made this reluctant mother so glad she took the plunge and reproduced.

I'm completely ashamed to admit that. I guess maybe I didn't realize how far I had sunk until I saw those DVDs from so long ago. It makes me so sad to think about the years that have been lost to this fog of someone else's creation, but I have to accept part of the blame for allowing it to happen. Perhaps I didn't have the strength to fight it, maybe I just figured I had so little experience that I needed to be led by the hand to a place I didn't necessarily want to go. It makes me sadder than I've been in a while to reflect on all this.

But it also makes me feel something else. Pissed off! Maybe I allowed others to alter my vision for awhile, but I don't want that to be the case anymore. Sam is still Sam. He is still brilliant. I have yet to see any school work that he has struggled with. Sure, he has some things to overcome. All of us do. Sam's difficulties present problems for people because they are not the usual difficulties children have. He has often baffled even Tom and I, so I can understand the frustration people dealing with him have, and why they "check out" and hang their hat on the limitations his disability presents. It's easier to write a person off and define them by the diagnosis they have. I am feeling so sorry that I allowed myself to fall into that trap. Before October 2005, Sam was defined by his personality, his love of life, his intellect, his sense of humor, and yes, his quirkiness. My goal for 2011 is to get back that optimism, the belief that anything is possible, and to never give up trying to get the best for Sam.

A "Normal" Day

2010-12-01T11:45:00.000-08:00

I think for one 24 hour period, I'd like to know what it's like to be the mother of "normal" 4th grader. I normally hate that term, and avoid it's use, but given my frustration level at this moment, it's probably pretty accurate. Now I know that life isn't perfect for anyone. As a friend in college was so often heard saying "We all have our crosses to bear." I know that people out there in the "normal" world also experience their frustrations, but just for one whole day, I'd like to experience a day without the following:

1. That upon summoning the child out of bed, I won't get growled at or yelled at.
2. That I wouldn't have to hear "I don't want to go to school" several times before 6AM.
3. That conversations between Tom and I over coffee would not be interrupted.
4. That there would be no complaints about chunks in the breakfast yogurt.
5. That no prompting to get dressed would be needed.
6. That all materials for the school backpack, coats and shoes would not have to collected by me first.
7. That I would not have to worry all day about how things are going in school.
8. That I would not have to get an email at 2PM from the teacher about Sam's bad day.
9. That I would not have to worry about how to handle the situation in school, knowing I should somehow address it, but having no idea what kind of thing would even make a difference.
10. That I wouldn't feel as if I am re-inventing the parenting wheel each and every day.
11. That I could count on the fact that all coats, shoes, backpacks, etc would be put away when arriving home from school.
12. That I would not have to hear in excrutiating detail every nuance of every Thomas the tank engine story.
13. That an idea I have about an activity to do would not be met with negativity.
14. That I would not have to make an entirely seperate meal from what I'm already cooking.
15. That I would not have to hear endless whining about not being able to go first playing Wii, or not winning at Wii.
16. That major anxiety attacks would not accompany bedtime (yes, the last thing had going for us seems to have fallen by the way side too!)
17. That I would not have to wonder for the millionth time if my son was ever going to be able to live as a productive adult.
18. That Sam has no friends that he has made on his own, and doesn't seem to "get" that his crappy behavior makes a negative impression on others.

Writing it all down doesn't help. This is the holiday fun I am dealing with. I hate to bitch- it makes me feel guilty, cause so many I know have it so much worse. Those dealing with disease, several mental or physical handicaps, drug abuse, alcoholism or a host of other issues. I'm sane (barely), Tom is sane (sometimes too sane) and we are dealing with HIGH functioning autism here. Days like these make me wonder what is just so "high" about it.

In praise of the genuine

2010-11-17T11:53:00.000-08:00

Last night I went with my friend Becky (also mom to an Asperger's kid) to hear author Jesse Saperstein talk about his book "Atypical- Life with Asperger's in 20 1/3 Chapters". Both Becky and I had read the book within the last week and enjoyed it- in places it was hard to read, but other passages were laugh-out-loud funny. Jesse speaks much like he writes- with honesty and lots of humor. Besides the obvious inspirational quality hearing him talk about his life, failures and successes brought me, I was deeply impressed by his genuineness. After the talk, Becky and I stood in line to get our books signed, and it was a long wait. Jesse took the time to speak to each person, learn their name, and sign their book with a personalized message. If there's one thing that many of us in the ASD community like to do, it's commiserate and share our experiences with others who are in a similar situation. To be able to converse with someone who has lived 28 years with Asperger's in the neurotypical world (1/2 of that time undiagnosed), who has experienced both the best and worst that life so far has had to offer, and who appears to be on the road to a successful life is a rare opportunity. My impressions of Jesse were mainly that here was a real person, someone who tells it like it is, is often brutally honest, but with whom you would always know where you stood. I wonder when it occurs in a person's life that they have to be on guard for people not being real. I won't say I'm especially suspicious or even wary of people I meet, usually someone has to prove themselves unworthy for me to sense they are being fake, but my question is, why is this the way things are? Jesse mentions in the book that things would be so much easier if neurotypicals would just say what they mean instead of playing games like avoidance or ignoring.
I'm not exactly innocent of practicing what I preach, but I have to admit I find it refreshing to be around people whom others might find blunt, or even tactless. Jesse says he had to learn compromise to have a degree of success in the real world. If the art of compromise means game playing, the use of it is probably questionable. I'm all for sparing people's feelings, but how often have we all had thoughts of things we wish we could express, things that might even be viewed as constructive and useful critcism? If there was a way to meld the two concepts together- tact and honesty, probably most of the world's problems could be solved.
In the meantime, I'm glad the Jesses of the world exist. I hope I am working on guiding Sam down a path where he can be both genuine and successful. Some days are harder than others, and it seems like we'll never get there, but hearing stories like Jesse's give me hope that things can work out.

I'm not going to let myself get dragged down!

2010-11-14T17:12:00.000-08:00

This has been my latest affirmation for the last couple of weeks, and it's becoming a mantra as the tsunami threatens to pull me under......

Sam's level of anxiety seems to be steadily climbing. Of course 24/7 he's not completely anxious, but the periods of anxiety are now daily instead of weekly. His sleep pattern has taken a good hit, and after the 5th time of visiting his room in any one evening, the rest of us are getting pretty anxious too. Anyone who knows us remembers that sleep is one thing that we have not had many issues with over the years. We would hear the horror stories of other parents of spectrum kids who tore their hair out getting their kid to sleep in their own bed, getting them to sleep PERIOD, and we considered ourselves lucky. In the last month, we've had to deal with Sam crying, complaining his room is too hot, clock watching and having it stress him out so much that we had to remove the clock from his room, experimenting with different bedding and blankets, staying up later, taking a small dose of melatonin, etc. The bottom line to all this is that he is stressed out over who knows what, doesn't know how to explain it or deal with it, and so the long trip down the mine shaft of darkness continues.

This trip is not unfamiliar to us. We've been here before- pretty cyclicly for the last few years. What is different this time is that I know it's been coming for a while, and so far I'm refusing to give in. My desire in this go-round is to attain some level of understanding into how Sam is experiencing this anxiety, to get him to some form of understanding, and to develop a "tool box" of strategies to use when anxiety come knocking.

In crisis situations like this, Tom tends to look outwardly for blame. What bad things are the kids in school teaching him? Who is picking on him? What are they making him do that he doesn't like? I know better than to think things are that simple. There is no quick band-aid that will make this disappear. What it means is more hard work for all of us. We didn't get an instruction manual with Sam. (not that we'd have read it anyway) I feel like my parenting journey has been one science experiment after another- the very same strategy I accused Sam's kindergarten team of employing 4 years ago. I can't say all the experiments have been failures- in fact I think my instincts are pretty good as far as knowing what interventions might work.

Times like these make my own anxiety so intense that I sometimes get swept up in the storm momentarily, then feel like shit after it's over for giving in and being human. I try not to beat myself up. I'm picking myself up tonight and dusting myself off, determined to re-entrench and not get swept away by the next tidal wave that will inevitably arrive in the near future.

My guilty pleasure

2010-10-17T15:10:00.000-07:00

Sometimes, as moms do everywhere, we need an escape. I'm sure most moms spend a considerable portion of their day worrying about their kids- whether they are too doing too little for them, too much for them, feeding them right, yelling too much, etc. We all have those little go-to things that rejuvitnate us when we have a minute to ourselves. Well, for the past 18 months or so, my guilty pleasure has been Christian Historical Novels. Pretty ironic for someone who has not darkened the doorstep of a church other than going to weddings for the past 25 years.
Oh, it started innocently enough. When I was still employed at the library, a set of books with attractive, old-fashioned looking women on the covers called to me from the shelves across from the circulation desk. I had not been a regular fiction reader since I was in my teens, opting instead for biographies and historical monographs, but something about these books made me give them a second look. I borrowed them and started reading. What I found in those pages were good stories with interesting, believeable characters. I could read through a chapter and not have to go back and re-read paragraphs to make sure I didn't miss anything. All these books required of me was the time to immerse myself in the story and enjoy. I noticed about 1/2 way through the first book that the characters seemed to talk about God a lot more than the average person might. I was mildly shocked to find that the books had been published by Bethany House, a publisher specializing in Christian books. I didn't even know such things existed! After this first series, I was hooked. I read just about everything by Tracie Peterson I could get my hands on.

Then I started investigating. Turned out this Christian fiction genre is a pretty big thing. Now the only thing I like better than reading the books is researching which books I'm going to read next! There seems to be a nearly endless supply of authors out there, writing about everything from pioneers in Kansas to debutantes in Newport. There are Christian fiction bloggers, Christian fiction lists on Amazon, and dozens of author websites. While one of the common threads all these books have is the characters' belief in God and faith, most of the books I have read so far (I would guess somewhere in the area of 75) aren't heavily preachy or scripture-laden. Sure, I've run across an author or two who veers into this area. When I find myself reading that kind of book, I just cross that author off my list. Most of the authors appear to be more intent on producing a good story than saving my soul, thankfully.

There's lots to like about this genre. Having always been a really visual person, I appreciate good cover art. The covers of many of these novels (especially the newer ones) appeal to someone like me, who buys a bottle of wine if I like the label. The reading is easy and entertaining- I don't feel like I need to have a dictionary handy and if I nod off in the middle of a paragraph, I can pick up where I left off with ease and not worry that I've missed something critical. I find most of the books I have read are meticulously researched, and refer to real historical events, many that I have limited knowledge of. I like the whole idea of a series where one character is followed from her teenage years into mature adulthood. Right now I'm reading the Copper Brown series by Jan Watson. Copper is 15 when the series begins, and through the books the reader gets to know her as she grows from child into an adult. Some authors aren't afraid to tackle difficult subjects such as rape, and even deaths of major characters. Most have happy endings, but the heroine often has to endure many hardships to get there. There is no swearing or smut, neither of which I've ever been a fan of reading (or watching, for that matter).

I think by far the biggest benefit that these novels afford me is the chance to escape to a world of long-ago where I don't have to do the thinking about the situations in the characters' lives. I'm used to imaging scenarios in the lives of my own ancestors and those of my clients. Lots of the details between the lines of the records I examine depend purely on what I can conjure up based on my knowledge of the times and places these people existed in. When my brain gets tired of trying to imagine what life must have been like for those real-life people, I can escape into a world that someone else has researched and dreamed up. I don't plan to become a regular church goer anytime soon, but I'm a total convert to this genre of books!

Changing seasons

2010-09-08T06:13:00.000-07:00

The other day as we were driving home from camp, I pointed out to Sam how some of the leaves on the trees were already changing color. He commented that he loved to watch the change of the season, and that fall and winter were his favorites. From an adult perspective, I have always loved fall for its beautiful colors and cool temperatures, but I don't love what it leads to- cold and snow. The change in the seasons has occasionally been a difficult time for us. A change in season often brings with it a change in scenery- starting school, ending school, major holiday, or vacation. I have to admit I never took much notice of how much changing seasons affected us until I had a child with Asperger's.

Growing up in New York state, seasons changing just goes with the territory. You get so used to winters being cold and snowy, springs being all about mud, summers sometimes hot and humid, other times less so,and falls being cool and very colorful, that you barely notice anymore. When Sam was very young, we went through life pretty much oblivious to the seasons, until he started school, which was the beginning of the end for us. I remember very much resenting being a slave to the school schedule- and it just made it worse to have school be such a negative experience for us for the first few years. I honestly didn't get into the "It's the most wonderful time of the year" attitude until Sam was in second grade at least! Anyway, change has since been tricky for us, so we always approach this time of year with cautious optimism, at least until we have reason to either go into panic mode or realize that everything will be ok.

Sam is beginning fourth grade this year in the same school, same room, with the same teachers as last year. The only thing missing is familiar friends. There is only one returning student from his class last year, a kid who joined the class in the spring and who Sam is not thrilled with. I know he had some anxiety about encountering this student again because he was said to have been "bossy and yelling at me." I try to point out that people can change over the summer, and that this student may be so glad to see someone he knows in the class, he might not be so bossy. That Sam tends to be bossy and overbearing himself is also something I try to (diplomatically) point out. I also remember a lesson from last year- "You don't have to be best friends with everyone, but you do need to try to get along." The very kid he clashed with early in the year last year ended up being a favored friend by the end of the year, and sorely missed during summer school.

So while there are bound to be bumps along the transitional road from summer to fall, I am feeling somewhat hopeful that this year will be a tranquil one. I, and others, have seen tremendous growth from Sam this past year, indicating that this is the right placement and team for him, and that the efforts that Tom and I are putting forth are really showing results. This makes me want to work harder, and hopefully see a second year of growth. This is the first year I sent Sam to school with goals with talked about together over the whole summer- make a bring home type friend, and be the smartest kid in the class. I'm committed to helping him realize each one!

Feelin' groovy

2010-07-14T17:07:00.000-07:00

Tonight is one of those nights that's the opposite of the nights when I usually write- I'm feel upbeat, surrounded by supportive family, friends and feelings. Things are going well in summer school- Sam's showing maturity in the face of others falling apart, making strides socially (we have actually had social gatherings in the last couple of weeks where we've been able to relax, enjoy ourselves, and not have to intervene in some social drama every 10 minutes!) He has a cool summer school teacher who seems to "get the jokes". Sam's first line to Mr. McTernan upon meeting him was "I hate summer school- I like REGULAR school better." Mr. McTernan's response? "Well, I've got you beat. I hate summer school AND regular school!" Seemed like a cool guy right then and there. We've had some social engagements in the last few weeks where I've witnessed Sam making efforts to get right in there- maybe not so much pushing his way in, but getting close enough to take part, observe, see what others are doing. Being part of the gang, even if on the fringes. Tolerating longer and longer periods of being around bunches of kids and doing silly "kid things". All the while continuing to nurture his interests in design, drawing, storytelling, writing, etc. The picture attached to this post shows a mirror, 3d glasses, magic markers and paper- his "tools of the trade". Using the mirror and 3d glasses to view images on the computer- mostly logos, but still "design stuff", using the magic markers and paper to re-create. Gotta get this kid over to the guys at Pixar! Anyway, I'm feeling good about the rest of the summer of 2010!

The 3rd day of summer vacation

2010-06-25T07:32:00.001-07:00

Here it is day 3 of summer vacation and the boredom has arrived with a vengeance. A vague arrangement for a pool party at a classmate's house has so far not materialized and so here we sit, waiting for the phone to ring. Back when Sam was 4 or 5 and social attachments were not supposed to be a huge part of his life, I really wasn't seeing the depths of his disability. Now that he is 9, at an age where he "should" be phoning friends, receiving invitations, getting dropped off at activities, and having sleepovers, he ie experiencing none of the above and there is a huge gaping black hole where those things should be. I remember experiencing some minor summer boredom when I was a kid, but usually it was two or three weeks into it, after the company went home, the books were read, and the toys we dragged out got old again. It seemed like I always could call a friend to play with, or just talk on the phone. Sam has no friends outside of school interactions or things I set up with old play group kids. He has never receieved a phone call invitation from a friend to do something. He has no siblings to play with or fight with. My guilt over everything is as huge as his boredom. Did I screw up by not having any more kids? Do I not do enough to get him out into the community? Is this gonna be his lot in life, no friends, no prospects, nothing to do? Will he have nobody after Tom and I are gone? These are the things I think about on a daily basis. Hearing him ask me why his classmate's mother hasn't called about getting together today is like a stab to the heart. It's things like this that make Asperger's hard for me to bear sometimes, and when it gets tough for me to see anything positive about it. I feel like everyone else's kid is experiencing the "typical" and "normal" things that happen in childhood, and mine is missing out. What the hell did I do so bad in my life that my child deserves this? I wish I could answer that. Sometimes I feel paralyzed by this disability, not able to see a way out of the dense forest, lacking in strength to try.

Just an example of what I go through on a semi-regular basis....

2010-05-21T02:35:00.000-07:00

Below is an example of something I wrote up to submit for the purpose of gaining services for Sam. Back in March, we got approved for eligibility for Medicaid Waiver services. This was after 3 1/2 years of messing around with countless forms, doctor visits and a myriad of evaluations. Little did I know the groveling was still not over. So, I forge ahead. Keeping in mind it's in our best interest to make things seem quite bleak, he's what I have to say to try to "sway" the powers that be in a competition for limited funds.

We began the process of applying for services 3 1/2 years ago, and in that time, we have only seen the need for them increase. Our son Sam was diagnosed with Asperger's Syndrome at age 4 1/2, so was never eligible for early intervention, and received only limited services under CPSE due to the timing of his diagnosis. His developmental functioning level at the moment is at approx. the age of four years. Sam cannot attend school in our home school district, and therefore must be bussed 20 miles each way to attend a self-contained BOCES classroom. He has a history of outbursts and impulse control that cannot be managed in a regular, even integrated classroom. Impaired social interactions with peers are the very essence of his disability. His anxiety level proceeding and during such encounters is so profound that it is often counter-productive to even attempt them. He cannot function independently in activities that neuro typical children commonly engage in- in fact he has great difficulty functioning in these types of settings even with extensive adult intervention. Acute anxiety is also present upon any kind of change that occurs in his life. It generally takes the first 1-2 months of the school year for him to become acclimated to a new environment, then regression is seen after school breaks, and even from day to day. He often has difficulty settling into his morning routine at school. These difficulties are reflected in behavior issues, inability to attend to even simple tasks, and disrespect to adults and peers alike. Any new activity that is introduced either at school or at home needs to be repeated many times over before he reaches a certain comfort level with it. Often teachers, therapists, and even us, his parents, are not patient enough to see things through to a satisfactory ending.
At home, Sam is very dependent on mom and dad for all of his needs. He needs prompting to do nearly every basic task from dressing himself to brushing his teeth. He has never gone to a friend's house to play unsupervised, does not answer the phone, and does not initiate any kind of independent moves away from mom and dad. Mom cannot work outside the home because she must be available to consult with teachers at a moment's notice, maintain Sam's familiar schedule, and manage his therapy and paper work.
We have been working with a family therapist for the last 3 years. While we have seen some progress, clearly there is still a long way to go. Our concern is that we want Sam to be able to function on his own as an adult and not become a ward of the government. We feel that the time is becoming critical to keep him on the right path toward achieving this goal. The therapy is very costly, both in terms of meeting with the therapist and with subscription to a web site that augments the program we are using. With only one income, the financial burden is becoming increasingly harder to bear, and of course insurance covers nothing. We seek the Medicaid waiver service, Res Hab services to help get Sam out into the community and start working on those critical social skills, and Respite for mom and dad to get a much needed break now and then.

Actually, I feel like Sam is kinda on a good streak right now. Life at home is tranquil, school seems to be pretty even-keel, and he gets the jokes. He seems to be growing a little right now- maturing and handling things a little better. I don't plan to let anyone at Medicaid know that, though.

"Look me in the eye..."

2010-05-10T06:50:00.000-07:00

I've just finished reading John Elder Robison's "Look Me in the Eye-My Life with Asperger's". It's a great read, highly recommended to me by several friends, and now I can add my endorsement. Aside from the obvious reason why I would enjoy this book, there's the fact that it's just plain full of good stories. It reminded me so much of another memoir that I totally enjoyed and recommend to people all the time- "Angela's Ashes". These two books have so much in common- both written by born storytellers who had not only the material to draw from, but also the rare gift of putting words down on paper in an entertaining way. Both men grew up in less than optimal circumstances, yet refrained from telling their stories from the postition of the victim. The events of their lives were told in matter-of-fact detail, no excuses or pandering for sympathy. Both wrote with humor about situations that might have come off as heartbreaking and depressing if left to less capable writers. I tend to admire people who are dealt difficult circumstances, yet rise above them and become exceptional at what they set out to do (or fall into!) It's the old "lemons-to-lemonade" adage. One thing I've come to believe is that a lot of times, until you are tested in life, you haven't had a chance to prove what you can do. If things just go along at a leisurely pace, nothing too bad happens, days pass pretty much like each other, you are never given the chance to really shine, to really make a difference. I know, and have often said, that I wouldn't be 1/2 the person I am right now if I didn't have the challenges that we have. Reading the experiences of John Elder Robison and Frank McCourt make me feel more determined to succeed. Inspirational, without being sentimental or sappy. That's what I'd call those books.

Unmotivated, part II

2010-05-03T18:03:00.001-07:00

I find I'm still as unmotivated as I was a couple of weeks ago, only now I sense some self-doubt and desperation creeping in. I'm thinking for whatever reason this is a by-product of having too much time on my hands. The self-doubt is sneaking in across all aspects of my life. Sure there is the usual "Am I doing enough for Sam?" worries, but add to this some other stuff. For example, I'm working on a genealogy case that is, at the moment, stalled due to lack of information. I'm waiting for replies from queries to notoriously slow and often non-responsive agencies to hopefully propel me forward. My client has already contacted me, looking for an update. Cognitively, I realize that she probably just doesn't get how slow things in the genealogy world move (these people are, after all dead for years and will remain so!), but part of me takes it as an indication that maybe I'm just not up to the task at hand. I don't like the thought of failing to find something for my client, especially since I'm being paid. Another cognitive thought I have about all this is that I know that I'm good at what I do. I know that if there is something there to be found, chances are very good that I will find it. I just always worry that maybe this will be the time when I can't find anything, and of course if that happens I'll be thinking it is my fault for not thinking of the one thing in a million that would supply the answer I'm looking for. I can see that it's probably like that with my pursuit of help and opportunities for Sam. I'm entirely self-taught in that area as well.
I just got done reading Susan Senator's book "The Autism Mom's Survival Guide". The points she makes in it are excellent- things like knowing how to take care of your needs so you can be fresh and prepared to deal with your child, giving yourself a break for not being the expert all the time and needing help and guidance. The thing that she wrote about that most struck me was that she felt her attitude toward her son was the thing that made her life most often the toughest. During the times that she saw more of the autism and less of her son, she found the going tougher. When she could sit back and just appreciate the things her son had to offer, and not look at him through the eyes of the rest of the world, she was happier, and so was her life overall. I have to believe that I'm guilty of that crappy attitude thing. Although my main focus is usually trying to figure out what I can do to help Sam, I realize that probably I'm not spending enough time just living life. I have to remind myself at least 50 times a day that it's ok if he's not playing baseball, or riding bikes with other kids, or even asking to have anyone come over. These are experiences that many children have, but not all have them at the same time, or at the same place. It's not fair for me to look at Sam through glasses meant for how my experience was, or through a telescope that reflects some other kid's desires. I need to stop worrying about what ISN'T and embrace the great things that ARE! Wish me luck!

Unemployed, unmotivated

2010-04-19T17:21:00.000-07:00

Most of the time I'm ok with the fact that essentially what I do for a job is be a stay-at-home mom. I feel quite lucky to be able to have this kind of life- to at least have it be a choice. But every once in a while I get antsy. You know, too inside my own head, too wrapped up in my own world, too consumed by my own feelings of worry and self-doubt. It's a weird kind of feeling that I can't describe very well. Like something is wrong, but I can't quite put my finger on what it is. Really what probably is wrong is that I have too much time on my hands. People who are gainfully employed rarely have the luxury of fretting to the extent that I do. They simply don't have the time for it. Their main focus is to keep on keepin' on- to not lose momentum or fall off the wagon- it would be too hard to catch up. I guess I've spent a lot of time cultivating a life of "leisure". Really instead of peace of mind and time to enjoy the slower things in life I sometimes think I've gained not much more than time enough to worry about the things I'm NOT doing. NOT earning money. NOT meeting new people and establishing new connections. NOT helping others or making a difference in the world. NOT doing enough to help Sam. It seems like the more empty my time is, the more I feel plagued by self-doubt. I guess guilt has a way of seeping in whenever there is an empty space.
When times like this happen, I wish I could go to a place where I felt more secure. Cognitively, I know that being at home to take care of Sam's needs is the most important job that I could have, and anything I do is helpful. I guess one always feel like they can be doing better. I just wish I could give myself credit for having the kind of life that I chose!

Peace on earth, just not at our house

2009-12-11T07:10:00.000-08:00

I'm not feeling very merry this holiday season. It seems like I'm going through the motions, doing what I always do, not really enjoying it or loathing it, just sleepwalking. I find my mind is consumed with doubt and worry at the moment, and I don't quite know how to let the joy of the season push the other stuff out of the way. Everywhere I'm seeing the word "PEACE"- on cards, in ads, in holiday displays, and that's something I'm not feeling, but really long to.

I'm worried about our family. I'm worried about Sam struggling, which is nothing new for us, but now something else has crept in- my attitude has gone from bad to worse, and Tom is really stressing out. Bad days at school, inappropriate language at home, huge disproportionate blowups over seemingly insignificant things have left us feeling beaten up and defeated. Like nothing we try and no strategy we use seems to have any effect. It's like I see Sam slipping away right in front of me, and I don't know how to stop it. I feel weary from constantly "tweaking" things. For maybe the first time in 8 years, I'm wondering "Why me?" What did I do to deserve this kind of life?

Everywhere there are images of perfect families enjoying the holidays. They are in the cards I receive, in TV commercials. My friends' kids are singing in concerts, playing in ball games, writing out lists to Santa. My kid cannot even regulate himself enough to be in the same room with another child without blowing up. We've had two disasterous playdates this week. My heart is breaking because I see Sam shoving people away with two hands. I'm VERY thankful for the support of my loyal friends who hang in there with me, even when the going gets rough. I'm wondering how much more of it I can take. I fear that Sam's life will be religated to living with Tom and I forever, hanging out in his room because he has no friends, no job, no prospects.

What I want to know is, when does all this RDI, ABA, any other therapy kick in? We see flashes of it, but when the chips are down and learned skills should be put to good use, they go out the window, and we are back to square one. I feel as hopeless as I did during Sam's kindergarten year, only now it's worse, cause I feel like so little progress has been made from all this hard work. I know that there will always be setbacks, that life is really one step forward, two steps back. I usually am able to accept the situation for what it is. I'm usually able to see the silver lining in everything, and usually able to see the positive affects that Asperger's Syndrome has had on our lives. I'm looking for the strength to get to that place again, and wishing for a little peace this holiday season!

The Game Club

2009-12-01T08:29:00.000-08:00

It's already December, and things at school are still pretty difficult. I'm trying not to let it drag me down, and instead I'm brainstorming new solutions. It's been pretty apparent to me for awhile now that one big issue we have is our limited exposure to NT peers. Sam is, after all, in what is definitely a self-contained classroom environment, his extra-curricular activities are limited to those that are fully supported, he doesn't invite kids over after school, nor does he know anyone enough locally to do that. So, we exist in the special needs bubble. It has long bothered me that there is no integrated solution- sort of like an inclusion classroom for after-school activities. So, we are going to create our own.

Enter the new "Game Club". I've convinced 2 of my most-trusted friends with neuro typical kids to be my co-founders. The concept is simple- meet in a small group (3 kids, 2 moms) once a week to simply play some kind of game. It can be a card game, a board game, an action game- anything just as long as it has rules and the participants each have some kind of protocol to follow. Sam and I have been practicing at home playing UNO. It has gone from being an abject disaster 6 weeks ago (Sam not being able to sit long enough to play a hand, having a meltdown when he loses a hand, playing by his own version of the rules) to being a big success about 90% of the time. Sam now plays by the rules, he sits and manages his own cards without me seeing them, and he can handle defeat fairly gracefully.

The purpose of the game club is quite simple- let Sam hone his social skills with neuro typical kids he knows, in a comfortable, sheltered environment. The comfort level for both Sam and I with these friends is very high- no judgement, no explaining, no fallout. We stay and play as long as it's a success. When things go south, it's time to wrap it up for the week. Slow and steady wins the race here. It will probably take months of visiting alternating friends' houses, but this is something I should have done long ago!

Once again, I am indebted to my wonderful friends. They continue to go above and beyond the call of duty to help us out. I don't know how I got so lucky- I wish I could say that I would be as understanding and accomodating if the tables were turned. They have saved my ass so many times that I've lost count. This is something that I am truly thankful for.

I hope to report back in a month or so about the progress of the game club. I fully expect it to take awhile to get into the swing of it. "Repeat, repeat, repeat" are words to live by when it comes to teaching Sam new skills. I guess one of my mistakes in this is not really comprehending that teaching Sam effective interaction with peers falls under the same skill category as getting dressed or learning to use the microwave. Taking the emotion out of it and replacing it with simple, bare bones instruction seems to make it much more manageable. Instead of me wondering why he is mean to kids to gain their attention, I should be thinking of it in terms of a user's manual. Master skill A before moving on to skill B.

Well, we'll give it a try.

Cracking.....

2009-10-26T05:02:00.000-07:00

Toady is one of the those days that it's incredibly difficult to be the parent of a child with Asperger's Syndrome. Sam is going through a really defiant stage lately- lots of "I hate you!", "shut up!", "I'm not going to listen to you!"- I'm sure you get the picture. We've been plugging along with our normal disipline routine- be as non-reactive as possible, give frequent resets, even loss of computer privileges. The problem doesn't seem to be improving at all. This morning after I had heard about the 10th argument over something I asked him to do (which included everything from whining to screaming to verbal abuse on his part), I pretty much lost it. I threw his backpack at the front door and told him to get out of the house and wait for the bus. Of course now I feel a whole lot worse for the way I handled it.

We all know that feeling when we are getting close to losing it. Even the most patient among us has those moments. It feels like momentum grips us and we are propelled ahead and over the cliff, not matter how aware we are that it's not the right thing to do. We know this is true of Sam. Whenever a situation with him starts, if it isn't immediately put to a halt, it only escalates and can become 10 times worse. This, to me, is the very root of the problem behaviors. I keep going over and over in my mind ways to put a stop to the escalation. I feel there has got to be a fundamental way to do this that so far I'm missing.

I don't feel proud of myself and I definitely don't feel like I'm doing a good job when I lose it. I realize that I'm only human and one can only hear so much of "I hate you!" before it starts to wear you down. I try to give myself a break- I'm not perfect, I'm just a mother that is scared to death for the future of my son. I keep waiting and praying for the lightbulb in his head to go on. When is he ever going to get it that being so reactive is not going to get him anywhere? When is he going to start accepting that things can't go his way 100% of the time, not everything he does is going to be his idea, that other people have feelings? This is something that makes autism so hard to deal with. What motivates Sam and what goes on in his mind as far a logic and what makes sense is so hard for me to wrap my mind around sometimes. I feel like if I could just understand, I'd be able to so much more effectively parent him.

Motivation to do the best I can for him is always driving me. Even when I fail miserably (like this morning), I'm still driven to improve. Part of my brain can't believe that the child I have guided for 8 1/2 years could be on the brink of being out of control. But then I realize that all bets are off in this situation, and that plain common sense is only a small fraction of what goes into handling this problem. I guess the next step is (after allowing myself 15 minutes to wallow in self-pity, is to get back on the horse to try again.

A friend in need.....

2009-09-18T10:36:00.000-07:00

We have some friends who are dealing with a crisis involving their child this week. It's not a life-threatening crisis; more a life-CHANGING one. And I mean that in a lemons-to-lemonade kind of way. How well I recall the feeling of thinking you know your child, then having them blind-side you and do something you would not think them capable of, in your own adult-experience way. At the time it's one of having the rug pulled out from under you, upsetting whatever teneous hold you have on "normal". (oops, there's that word again) After having time to reflect, you realize that you have look at the situation not through your eyes, but through your child's. It's not really a matter of knowing your child, it goes deeper. It's realizing what motivates them, and how they interpret all that. Always tricky with a spectrum kid, but sometimes equally tricky with NT children, as in our friends' case.

But I digress. My real point in posting about this is that I feel like I've become a parent resource. I'm here to tell you that this is something I'm proud of, not complaining about. Tom and I have worked so hard (and continue to work) over the past couple of years, that it's such a compliment to think that friends would actually seek us out for advice. First there's getting over the hurdle of realizing that the RDI training we have received can really be applied to so many situations- not just the ones that result from the Autism Spectrum. Then there's the thought that people look at our family and appreciate the hard work we do and see that it's actually having a positive affect on how we live our lives.

It makes me so happy to see the effects the RDI program is having on our family, and it makes me even happier to be able to offer suggestions to people who are struggling with important issues. It's like a widening of the circle of influences all around. Our friends have a lot of work to do to restore peace to their family, but we know that the hard work is worth it. It took a crisis or two to get us where we are today, and really it was a blessing in disguise, as I hope is the result of what our friends are going through.

Feelin' optomistic

2009-08-14T06:19:00.000-07:00

Today is Sam's last day of school with Ms. Breeyear and his old classmates. I have to say that this day is feeling much less bittersweet to me than I expected. I remember thinking in the fall of 2007 when things started to "click" with Sam and his school situation that I was going to have the luxury of 2 whole years relatively stress-free, and that I was going to thoroughly enjoy it after the hell that was kindergarten. Well, I'm happy to report that I DID enjoy my stress-free period, and I'm still feeling pretty relaxed leading up to the change in schools and situations this fall. We all knew there would be a change of school, classmates, aides, therapists and teachers for third grade, but I believe we are headed into the best possible scenario for Sam. After meeting with his new teacher, Mrs. Geis, I'm feeling confident that she is going to be a good fit for him personality-wise, and definitely experience-wise. From the descriptions we have heard of the class he will be going to, it seems as if it will be even more tailored to his needs than the previous one. I feel confident he will be challenged to learn up to his full potential, in an environment where he's accepted and where his gifts are appreciated. I'm certain there will opportunities for him to make friends, and for us to connect with other parents. If this new class is even half the well-oiled machine that the old class was, it will be just fine.

I can't say enough good about the class he's been in the past two years. At the time we found this opportunity, we were struggling to find balance in so many ways. School was an utter disaster, our home life was chaotic, we didn't know what path to go down. My feelings of frustration were consuming me- here I had this bright, friendly, energetic, polite, and happy kid whom nobody could come up with a way to manage. My heart broke when I walked into his kindergarten classroom and found his desk isolated from everyone else's. It was so hard for me to keep my eyes on what I KNEW was true- this kid has potential to do something truly special with his life- when so many continually tried to drag me down. So to realize where we are two years later is especially gratifying to me. To see what I knew in my gut back then taking shape now is so wonderful. We owe a lot to that team at Bradt school. Under their system and with their experience, Sam found himself in a school environment that allowed him to be himself, yet still grow academically and most importantly socially. We have seen so much personal growth in the last 6 months especially. In April, when new, younger students transferred into the class (a situation that Sam had struggled with in the past), his teacher voiced concern to us about how Sam would handle it. Well, he really handled it just fine. Not only did he not regress in his behavior, he actually was able to recognize the differences between himself and the younger kids, and what might be triggering their difficulties. His teacher reports that he has been a big help in the classroom. Amazing what true, trained professionals in the correct environment can accomplish.

We also owe a lot to our RDI training and our consultant, Theresa. Her guidance has been worth every penny over the last 18 months. RDI has made such a huge difference in our day to day lives and it's given me confidence that we can get through just about anything the future holds. Just the feeling that we, as parents, are in control, is so gratifying and empowering. Having a third party to "coach" us has made it much easier for us to critque ourselves and each other, and it also feels good to know someone has got your back if you feel things aren't going quite right. So much of Sam's personal growth can be attributed to us working with him under Theresa's guiding hand.

So, while I'm sad that one era is ending, I can say that it feels right. The time has come to move on, and at peace with that natural progression. Besides, he can potenially stay in THIS class for 3 years!

The Green Raindrop

2009-06-20T20:46:00.000-07:00

Lately Sam has been talking to me about something he calls "the green raindrop". The way he portrays it, the green raindrop is something inside his brain that "tells" him to do things that he knows he shouldn't. He has cited examples of mis-deeds from kindergarten (2 years ago) that the green raindrop compelled him to do, such as destroy something some other kid made. The fact that he is contemplating such things so far after the fact indicates some kind of awesome personal growth on his part. Sam has never been the kind of kid to verbalize his deep insight (although I know it's there), so the "Green raindrop" talk has kind of been a break through for us. I've often thought to myself that the reason Sam has Asperger's Syndrome is because he would just be too damn perfect if he didn't. I've always sensed that he had a strong desire to do the right thing, but just was not able to, due to his "disability". The presence of the green raindrop seems to confirm my belief. Since we have seen a diminishment of the kind of behavior that the green raindrop condones in recent months, I asked Sam if the green raindrop was either gone or in a better mood lately. His reply was that the green raindrop was always angry, and that he hadn't gone away. I don't think he has it in him yet to verbalize the fact that he is maturing enough to control the impulses of the green raindrop.
Sam and I have had some meaningful dialog on a few topics of late, not just the green raindrop. He's verbalized to me that he has some anxiety about starting third grade in a new school setting, which is HUGE for him. Prior to this, his anxiety about new situations has always manifested itself in actions and reactions to his environment. Now, I don't for a minute think that just because he is talking to me about his feelings about being a third grader that it will make the transition easier. I fully anticipate that we will go through a rocky period in the fall when he starts at Westmere. The difference here is that for once he is verbally acknowledging his anxiety, which I consider a big step on the road to self-awareness and awareness of the world at large.

Wanted: Friends with "alternative" lives

2009-05-25T16:29:00.000-07:00

Those of you who are regular readers of this poor excuse for a blog are familiar with my ever-evolving quest for answers to the normal/not normal debate. Though I know that this is something that I will probably revisit in the future, at this point in time, I feel like I've come to terms with it. I'm learning to accept and embrace the Dougherty family's version of normal. I'm actually thinking it's pretty cool. One problem- I'm feeling like I'm not surrounding myself with enough people who also live their own pretty cool version of normal. I know that everyone has their issues, and most people would in fact say that they have this problem or that, and they are doing whatever to compensate for it, but what I'm talking about it people who actually walk the walk, instead of just talking the talk. I can remember endless conversations with a former boss of mine who was always half lamenting/half thrilled to death that he wasn't fitting in within his suburban neighborhood. We used to discuss how both of us felt like oddballs- he because he worked 15 hours a day trying to make a go of a small business, and me because I was 35 and childless (by choice). Finally the day came when he divorced his wife, moved out of his suburban house, bought a little house in the country far away from everyone and is finally at peace with his exisistance. I got pregnant, had my son at age 38, learned he had Asperger's Syndrome, and have spent the last almost 4 years trying to get a grip on it. I've come to realize that having a child that is differently abled suits me on a lot of levels. Whenever I hear my group of friends relate their stories of carting kids back and forth to the ball fields, signing up for this or that school duty, etc., I inwardly cringe because I know none of that is anything that I would enjoy doing at all. Having a child who is differently abled gives me a pass to get out of that stuff. Instead, we choose alternative things to get involved in that we never would have been exposed to had we not been sent down this path by a higher being. What I'm looking for now are others who are comfortable in their own alternative lives- who embrace the "differentness" and see it as a blessing that expands their horizons and brings joy to their lives in ways they never could have expected. I'm looking for parents who work as hard as Tom and I do, who appreciate everything they have and band together when times get tough. I know these people are out there. Make yourselves known!

Somtimes I feel like I'm dealing with Helen Keller....

2009-04-02T17:38:00.000-07:00

And today is one of those times. Everyone remembers the story of Helen Keller, who was blind and deaf, and her teacher, Ann Sullivan, who became the one to finally free her from her world of isolation. I sometimes feel like Sam is unreachable. I struggle during these times like Ann Sullivan must have struggled, having the knowledge as teacher about what she wanted to teach, but unsure about how to get the information to her student. Sam is going through a period right now where he is obviously struggling with something internally. It's manifesting itself in escalating behaviors at school, back talk and screaming at home, and basically melt-downs at every moment when he is challenged or frustrated. I wish it were a matter of being able to sit him down and ask him what is bothering him. It's almost like he doesn't conciously know that something IS bothering him, let alone put it into words. Instead, little things that don't ordinarily cause distress (like a trip to get a hair cut) produce a 1/2 hour standoff and tantrum. I feel like I continuously search my brain for some way to get through to him during these episodes. I feel so inept- what can I do to help? We try to tighten up on the limit-setting, we try to spotlight good behavior, we try "re-sets". Still the short fuse remains. It kills me when I get to the breaking point, when I've heard screaming for the 10th time in one day, when I hear him arguing with everything anyone says, when the expectation sheet comes back from school with yet more dashes. I pray constantly for strength to be able to ride it out. I pray that I can someday do what Ann Sullivan did- find a way to penetrate a pretty stubborn wall of resistance.

My favorite day of the year

2009-03-31T10:01:00.000-07:00

Tomorrow is the one day of the year that I dread above all others. It's the day when Tom and I have to beg and plead for our son to receive the education that is appropriate for him. Seems pretty simple, right? What most parents take for granted, the "free" public school education that children get every day with barely a thought from anyone, is not so free for us, in terms of time and energy spent. Each year I worry myself into a frenzy over something that by definition should be a pleasant, or at least, tolerable and business-like, experience. A committee is set up to determine how best to educate a special needs child. This committee should, theoretically, have the best interest of the child at its heart. (remember that "no child left behind" thing?) Due to my inherent distrust of people in general, I find it hard to believe at times that anyone on the committee save for Tom and I has much interest in what's best for Sam. Of course this varies from year to year, from school to school, and from team to team. This year I feel like we are in pretty good shape- there's Tom and I , and then the team currently working with Sam, whom we are in agreement with about next year's placement, the team that spends 6 hours a day, 5 days a week with him, and have for the past 2 years.

Then there are the ones holding the purse strings. The ones who have only seen Sam on fewer occasions than there are fingers on one hand. The ones who administer tests that will claim to tell someone anything they would ever want to know about a child. The ones who know what children with Asperger's and Autism are "supposed" to be like, and what is "supposed" to work for them. These are the people who have been instructed by the people whose job it is to spend taxpayer money to save as much as they can. So I don't believe that my son's success is their first priority.

I think back to my first CPSE meetings, realize how woefully ignorant I was, and thank God that someone up above was looking out for me. I feel like it's pretty miraculous that we've been as successful as we have given our lack of experience. One good aspect of all this is that with each year that goes by, and with each experience I have, I learn something new. I've always kind of gone with my gut feelings, but now I feel like I'm gaining knowledge to back up what I've always felt was right.

So while I still dread having to go through all this to get something that should just be a no-brainer, I realize that anything worth having is worth working hard for. I will walk into the meeting with my game face on, and with confidence that no matter what, I can let my gut and my true interest in Sam's well-being guide me. It hasn't steered me wrong in 4 years, so I'm gonna stick with it!

Toggling between two worlds

2009-03-16T04:40:00.000-07:00

One thing I constantly struggle with in my quest to make a success of parenting a special-needs child is the challenge of indentifying where we fit into the world. Are we members of the special needs community? Are we functional enough to embrace the realm of the "normal" world? Does it even matter? Of course the simple answer to this dilemma is that we exist in both worlds to a degree.

I have to say I feel quite comfortable as a member of the special needs community. A lot of my associations have to do with people who are dealing with family members on the spectrum, as we are. These people have seen it all, and not much rattles them. Certainly nothing my child could do would make them bat an eyelash. There is bound to be a sympathetic ear, and someone will always have a story that can top your worst experience. You can't buy that kind of acceptance, and it's really worth a lot to me. Another thing I feel is an advantage about belonging to this community is that it gives Sam a safe environment in which to shine. People who are "like us" see Sam as a star- verbal, literate, upbeat personality. They are less apt to define him by his "issues".

There are, of course, negatives to it. The biggest one is that you usually have to go out of your physical community to make connections, so geographically you may not be able to be in the environment as much as you'd like. Also, there is a whole big world out there that is not included here, so at some point you have to come out of the protective umbrella and venture out into the world.

The normal world makes me uncomfortable on a lot of levels. Lately it seems to be getting harder, not easier. Back when Sam was 4 and did something like throw something, or run away, or lay on the floor in the post office, it was fairly easy to explain away to curious on-lookers. Now it's more of a challenge. My fear of not being able to handle the stares, rude comments, or rejection of "normal" people makes me gun-shy of trying new things. I often wonder (say, maybe 10 or so times a day) if I'm doing Sam a grave disservice by not exposing him to more "normal" world activities. Instead of signing him up for soccer on a town team, instead I choose to have him take swimming and golf lessons from STRIDE. Instead of putting him a cub scout troop, I choose to sign him up for a social skills group for special needs kids. Is this wrong? Should I be accompanying him to "normal" activites, knowing that I would have to be by his side 110% of the time to make sure it worked. Doesn't this defeat the purpose of the activity?

I know people with spectrum kids who spend very little time in the "special needs" world. Maybe their kids are just better equipped to deal with more "typical" activities than mine is. It makes me sad to think that Sam might be missing out, but then in nearly the same thought, I know I shouldn't wish for something that isn't possible.

Does all this matter? Most of the time I think I come to the conclusion that really it doesn't. What we need in this family is a healthy mix of the two worlds. I'm still struggling with getting out of my comfort zone and pursuing those kinds of "normal" activites that would be appropriate for Sam. If they are out there, I want to find them. In retrospect, maybe I've always kind of struggled with what was "normal" and what was "not". I used to feel not normal because I was so on-the-fence about wanting a family to begin with. Now I feel "not normal" because I'm not able to balance my life the way I want it. I think way back long ago, I tried to convince myself that there is not just one definition of normal. We as individuals can determine how we choose to live our lives, what paths we follow. If we choose to live an "a la carte" kind of life, picking from different communities, activities, friends, situations, that should be our choice. There are people who never choose to leave where they are most comfortable. I want to make the choice to keep pushing myself to walk out of my comfort zone and find the best opportunities, no matter which world they are in.

There's power in being positive

2009-02-25T07:12:00.000-08:00

No, I'm not talking about those people who go around saying "Have a nice day" and always seem to have an insincere smile on their face. I'm talking about being positive with your child, for a refreshing change. All of us who are parents are all too familiar with those moments when your child does something you didn't see coming, usually in public, and we long for the floor to open up and swallow us. For those of us with spectrum and ADHD kids, this is territory that we learn to deal with, all of us a little differently. I've always been from the school of removing the child from the area, and dealing with it either at home or someone away from the general public. Happily, the Nurtured Heart Approach is giving me some tools to deal with these situations much more comfortably, and maybe even lesson them so I won't have to deal as much!

You see, in this house we have adapted a zero-tolerence to negativity. Not a zero tolerance to consequences for inappropriate behavior; instead we have taken a vow not to get sucked into the big, vapid vaccum of the scowling, yelling, begging, bargaining, bribing, lecturing, door-slamming brand of "discipline". We have basically vowed to erase these ineffective strategies from our lives and instead substitute something that seems to be taking root, growing, and actually working- being positive.

I think that overall our society is very negative. Just look at the news. Sure, some "feel-good" stories are thrown in for human interest, but the lead stories are always negative, doom and gloom type stuff. People who complain get lots of attention. Those who "go with the flow" or actually dare to praise someone or something are forgettable. To be sure, this attention is of the negative kind (of course), but it's still making a statement like "I'm being acknowledged- I matter! People are listening to me!"

Think of how that translates to our kids. If the only time they are getting BIG TIME attention from us is when they are misbehaving, this is gonna become the vehicle by which they define themselves. They think they get the most bang for their buck when they are bad. Think about how animated and "in the moment" you are when you are mad. Compare that to how sedate you are when spending "normal" time with them or even praising them. Even if we try to go over the top when giving them positive feedback, it somehow seems fake or too scripted. (like the overly-positive person described above).

Those of you that know Sam have seen that he is one of those kids that feeds into negative attention. Many times in the past he's expressed how he can't wait to tell someone how badly he did that day in school, or what he broke or disrupted. Clearly he is looking for the big reaction such revalations usually generate. In the past, I've felt pretty helpless in these situations, wondering how to break the cycle and turn things around.

So that's what we are doing, breaking the cycle. Making an effort to observe Sam in his day to day activities, make specific comments about what he is doing and how it contributes to the kinds of things we want him to do. We've seen a decrease in "problem" behavior overall in the last couple of weeks, an increase in his independence, and he's even been observing and commenting positively on the things that Tom and I do!

Even without any observed differences in Sam's behavior, I still would be feeling good about this approach because of the way it makes me feel about my parenting skills. I no longer feel helpless when confronted by the kinds of doubt I had when I wondered how I could help Sam get over the hump of feeling so negative about himself. I know that I am actively creating situations for him to succeed, and pointedly down-playing the ones that are not so successful. He still gets a time out when he has crossed a line, but now the time out is meant more like a break from creating successes. He's learning that in order to get back to being able to receive positive feedback and get connected with us, he has to serve his time out well, then get back in the game. I feel so much better knowing that I don't have to waste my time doing all those disipline things that never worked with him. No more yelling, and then feeling like crap after doing it.

Nothing is perfect of course, but I'm so excited about the change this approach is bringing to our family.

Connecting

2009-01-30T06:40:00.000-08:00

One of the things I've experienced continously since my entrance into the "special needs" community is the basic need that most of us parents of "different" kids have to connect with others who share a similar exisistance. It happens everywhere I go that I enounter parents of kids on the spectrum. I can say from experience that there's nothing quite like the comfort of chatting with someone who "gets" what you go through, who can relate to the stress of an IEP meeting, someone who is probably trying to juggle dealing with their child while conversing with you, and who understands why you can't just drop your kid off at the birthday party like other parents do. There's a comraderie there that makes a stranger intimate almost immediately. Whether these chance encounters lead to lasting friendship is another matter; the initial "attraction" is a strong bond.

I think all of us in this situation are craving the same things: someone to talk to who gives us the look of recognition, more and better information about what we can do as far as interventions, and additions to the support network we all want to build around us. Those of us in the special needs parenting world can't simply go to the neighborhood block party and start talking about our kids in the traditional way and expect it to result in a life-long friendship. That conversation might go something like this: Neighbor: "We had baseball practice yesterday and Johnny hit the ball out of the park 4 times. Our team will be hard to beat this year." You: "My Jimmy threw a pencil box at a teacher and had to spend the day in the principal's office. He really didn't get, nor care, why he was there. The school is talking out-of-district placement for him for next year." Based on that conversation, you probably aren't going to get calls for many playdates. But another conversation, taking place just about anywhere you might encounter a parent of a child on the spectrum, like maybe a tae kwon do class, might go something like this:
You: "My son spent most of his kindergarten school year in the hall, cause the teachers didn't know what to do about his "disruptive" behavior." Other parent: "The school has suspended my daughter for being "agressive" and having anger issues. When can we get together for coffee and discuss strategy?"

My point here is that the need to connect is universal, in every sphere. Those of us who live with special kinds of kids just might feel the need more acutely, since there aren't whole neighborhoods of us. We seek each other out. Which is where the internet comes in. There's a great discussion about the internet community of "super-moms" taking place on John Elder Robison's blog. Read for yourself: http://jerobison.blogspot.com/2009/01/supermoms-and-mom-empowerment.html

The internet has become the "neighborhood" for moms of special needs kids. We can converse with people far and wide, from all different countries, circumstances and walks of life. The internet makes the gathering and diseminating of information so much easier, more convenient, and satisfying to do. Anything that can be done while wearing a bathrobe is ok with me!

For my part, I'm gonna keep to my New Year's resolution to reach out to people and provide them with any ideas or suggests I can. If you happen to "see" me anywhere- either in the flesh or on line, just know I'm here to listen and help!

It's that time of year

2008-12-31T11:50:00.000-08:00

It's the time of year to look back at the high and low points of the last 12 months, and to make resolutions. Whether we like to admit it or not, I think nearly everyone resolves to improve themselves or the world around them around New Year's. Keeping those resolutions is another story, but in the spirit of eternal hope, here's a few things I want to work on in 2009:

1. Accentuate more of Sam's positive accomplishments to him. RDI has brought me a long way down the road toward de-emphasizing the negative, but now I want to go a step further- to catch Sam in the act of doing the right thing, especially in situations that I know are difficult for him. I'm reading a book about "The Nurtured Heart Approach" which offers techniques for putting the focus on accomplishments, in an effort to make the need for negative reinforcement less. Once again, I have a fellow blogger to thank for bringing this book and approach to my attention.

2. Let go of some of the guilt and constant worry that I'm not doing enough. Many people have been kind enough to point out to me that they think I'm doing a good job, by either observing or by what they have read here. I so appreciate all your encouraging words, but now I really want to take them to heart. I want to get rid of the aspect of worry that makes me feel inadequate, but keep the part that drives me to "tweak" everything and to think outside of the box. I guess there are positives and negatives to every "flaw" we perceive in ourselves.

3. Reach out to others who are in a similar situation as ours and find a way to help them. If it's holding support group meetings more regularly, or just chatting with someone who's having an off day, I want to feel like some of the experience I've had over the past few years might help someone else too.

4. Make it a point to get together with many of the old friends I've lost touch with. I know a lot of you read this blog, and it seems like the only time we correspond is during the holidays. This year I'd like to actually get together, laugh and reminisce about the past, and catch up on the present.

I hope all of you have a wonderful 2009, and have success keeping your own resolutions!

A Thanksgiving feast, 5 days early

2008-11-23T08:05:00.001-08:00

Last night we went out to dinner. Not an earth-shattering occasion for most people, but a pretty significant one for us. We had planned to go to the Schenectady Christmas parade, but the thought of standing outside for hours in below zero windchills was somehow not that appealing. There's only one parade I'm willing to stand outside in the cold for and that's not without a little help, but that's a blog entry for another holiday!
Now going to a restaurant to eat was one of the those things that was not even possible a couple of years ago, since even the most kid-friendly menus still didn't have anything on them that Sam would eat. Add that to the stress of having to keep Sam occupied at a table sitting down for an hour or more, his difficulty understanding why he had to communicate in a "quiet" voice, and you have a recipe for disaster that was just not worth the trouble of. The whole point of a dinner out is to relax and enjoy your meal while appreciating the company of those who accompany you. It's not an occasion that lends itself well to mental gymnastics or creative parenting exercises. So we gave it up for quite a while. (truthfully, when it came time for belt-tightening with the current economic situation, it was nice that dining out wasn't one of those luxuries we had to give up, cause it was already gone!)
We made reservations at the Italian American Community Center's restaurant since we had a gift card to use up. The place was virtually deserted when we arrived (a good strategy for when you don't know how it's gonna go is to go early!), but quickly filled up. We got the best table in the restaurant, right in front of the fireplace. I was armed with plenty of computer-printed puzzle and coloring sheets (Thanksgiving themed about one of Sam's current obsessions, the "Gilbert" series of books by Diane DeGroat- such a cute series- check them out! www.dianedegroat.com)
To make a long story short, we enjoyed a wonderful meal. We had a very attentive waiter who was friendly and had some great recommendations, Sam was completely engrossed in his word search puzzle for most of the time we waited for our food (he even made a few word searches of his own when he was done with the printed one). The food was excellent- very fresh and delicious. Sam loved his pasta and sauce and drank a huge glass of milk. At the end of the meal, we had cannollis, dad sipped a cappuccino, and I finished my wine, all the while having a pleasant conversation with Sam about school and his friends there. I don't remember feeling any apprehension or stress at all during the time we were in the restaurant, in fact the evening seemed to get better as it went along. (ok- maybe the wine helped a little) On the way home, we listened to Christmas music in the car and critiqued the songs we heard, all three of us, TOGETHER.
I guess this is what co-regulation is all about. Lately I have been feeling like Sam is less of a by-stander in the day-to-day operations of our house and more of a participant. Sure sometimes he's off in his own world and I have to remind him to do something more than a few times, but overall I feel like his existence plane is closer to ours now than it ever has been. I'm hoping we can have more experiences like last night, cause each one encourages me to try more.

Surgery vs. Asperger's- More in common than you think

2008-11-16T07:28:00.001-08:00

My nephew is going to have heart surgery on December 8. The thought of this adorable, vibrant, joyful, typical 2 year old going through this scares the crap out of me. I cannot even imagine what it must be doing to my sister and brother in law. When I think of the challenges our family faces vs. dealing with a serious medical condition, I decide that the surgery must be worse. Only because it's not a part of my reality, which I'm used to. Our situation only seems to boil to a crisis point maybe once a year or so (and hopefully less frequently as we go along). I imagine being told that your child has a serious heart condition that may or may not reverse itself is similar to being told your child has Asperger's Syndrome. It's so hard to believe that your beautiful child whom you love so much is not "normal". Immediately you "circle the wagons" and start plotting your strategy. In either case, you don't know a lot about these conditions, so you have to research on your own, or consult experts who inevitably give you their version of what the reality is. You are left to make of it what you will, and absorb it into your own reality. You find support groups of parents and children who have experienced these same things, and lived to tell about it and hopefully thrive. These groups become a source of strength and camaraderie. You are told there are interventions which will help your child live as "normal" a life as possible. (there's that word again- how many times a day do I redefine "normal"?) My poor little nephew being hooked up to monitors and machines, having to be restrained from doing his typical 2 year old things, being in some kind of pain, is not much different than my five year old being subject to all kinds of behavior modifications strategies, trying to fit him into an environment that he clearly was not suited for, singling him out for his inability to "conform". The only good thing about these 2 scenarios is that both of them are/were too young to realize what is/was going on, and hopefully will not be emotionally scarred from them. We, as parents, have to take to full hit of the pain and apprehension that goes with this.
I'm sure at some point during this process my sister has been (or will be) frustrated to the point of possibly lashing out at whatever "experts" happen to be around who are treating the child more like a science experiment than our beloved child. Maybe, and hopefully, medical professionals that deal with children are more skilled at this than teachers and administrators seem to be. Frustration with a situation you have little control over is just human nature.
I guess the biggest difference between the two scenarios is that my nephew will go on the lead a perfectly "normal" life after he recovers from the surgery. The crisis situation is now, and most likely will only be now. Sam's situation is a bit more complicated, but I've got news for you. He's going to lead a perfect normal life, too. That will be normal for him, normal for us. Like my sister and my brother in law will not rest in nursing my nephew through his recovery, Tom and I will continue to plug along and nurture Sam through whatever we need to go through. Slowly, the rest of the world is recovering, and we'll keep right on working.

I'm handling it.....

2008-11-14T18:25:00.000-08:00

I often wonder if parents of NT children constantly push themselves to improve their parenting skills, as I find myself frequently doing. I guess it would depend on the individual parent. In my brain, the wheels are always turning, and how to improve my parenting effectiveness is an oft-visited subject. I guess I feel like if I'm not always thinking of ways to "tweak" how things are going on the home front, I perceive myself as not doing my job. I also secretly worry that people are going to see me as weak, ineffective, lazy or just plain dumb. If I could wish for one thing, it would be to rid myself of this burdon. I'd like to expel the feelings that I have that make me want to explain myself, detail what we are doing to improve this or that behavior, narrate what plan we have to develop communication. I wish I could just realize that I am a caring and involved parent, I AM trying hard, I AM CAPABLE!!! I am my own worst critic. I sometimes intrepret people's silence or lack of encouragement as criticism. When I speak of the efforts Tom and I have made, are making, will continue to make, and get little or no feedback, I think back to the old statement our mothers used to make to us "If you can't say something good, don't say anything!" I misinterpret silence or alleged indifference as a negative. In fact, I'm sure what's going on is very similar to what happens when someone dies, or is seriously ill. People on the outside respond with an awkwardness born of dealing with a situation they don't have to handle every day. They know they care, but they are not sure how to communicate this without saying something they perceive as stupid or unfeeling. I sometimes feel like people don't know what to say to me. Well, to take a page out of the Asperger's book, here are some suggestions.
"It's clear that you are trying hard to do the best for Sam." "I admire how much thought you put into your decisions where Sam is concerned." "It really shows how dedicated you are to being a great advocate for your family." "You are really doing a great job- keep it up!" I know that parents of NT children don't get any praise for how they are raising their child, either, but sometimes it's nice to get a little cookie thrown my way to sustain me over the next hurdle. I'm working harder at this than at anything else I've ever done in my life, because this means more than anything else I've ever done. That stakes are a lot higher, and as Tiger Woods says "Failure is not an option."

Too much time on my hands

2008-10-30T09:36:00.000-07:00

I was reading a post from one of my favorite bloggers the other day who currently home schools her son. She was commenting on the fact that she rarely has any time for herself, and while she knows she is doing the right thing for her son at this point, she is still craving some alone time. This got me thinking about my situation, where I literally feel like I have too much time on my hands. Sam is gone for nearly 8 hours a day, 5 days a week. I'm very grateful that I don't have to sit by the phone dreading its ring for that 8 hours. This leaves my mind a blank slate. Anyone who knows me is aware of my many hobbies, and yes, I love to work on those, but something is definitely missing. For 11 years I had a cushy job where I came and went as I pleased, had an opportunity to get out of the house and mingle with adults (I use the term somewhat loosely here), and use my talents (if not my brain) to perform an in-demand service. Since the demise of that business in 2006, I've worked part time at the local library. While this has its good points (again, pretty much coming and going as I please, I'm actually using my brain, I have regular communication with my community, etc), there are plenty of negatives that I just can't get past, which is why I made the move to cut my hours back in June. I did this partly because I had a percieved opportunity to work at doing genealogy which so far hasn't panned out the way I had hoped it would. (actually the truth is probably more like I envisioned it to be way more than it ever was going to be in the first place!) Truthfully it was a good move to cut my library exposure down to one night a week, now my attitude about going there is much better, and I don't dread it like I used to. Still, the negatives remain there. So, I've been looking for another job in earnest since late summer. I scan Craig's list everyday looking for unique opportunities that won't bore me or insult my intelligence. (I'm getting pretty good at weeding out scam ads!) So far I'm coming up empty. As usual whenever I do any kind of research into anything, I feel like there must be some magical source that I'm not privy to that would have all the answers I am seeking. Where are all the classifieds for the cool jobs? I mean the ones where I get to go to some library or archives, get a research assignment, work on it on-site for awhile, then bring it home to work on it some more. Where are the opportunities that would allow me to hang out in a research room and help people navigate the stacks of books, the boxes of microfilm, or the tangly world wide web? Well, this week I decided what I was craving was a volunteer position, so I'm taking steps to make it happen. While ideally I'd like to get paid for such a thing as described above, maybe the first step is to get a foot in the door.

A day in the life......

2008-10-14T10:02:00.000-07:00

Ok- so the "once a week" writing thing hasn't worked out as I had planned, but I hope to be better about it in the future. I thought it might be fun to write an entry about what our typical days are like here at the Dougherty house, from the point of view of what goes on in Sam's life, of course.

We usually get up around 6AM- Sam is buried under blankets and stuffed animals and usually wakes up talking a blue streak (which we are trying to tone down a little bit these days). We all hang out down in the living room, drinking our juice and coffee, watching the news and weather, and reading the paper (when it shows up early). I prepare Sam's breakfast (these days a corn muffin, yogurt and applesauce) and then his lunch. Sam eats breakfast while watching "Max & Ruby" on TV, and usually while drawing or writing one of his numerous books. Sam washes up, brushes his teeth and gets dressed after this, then he goes downstairs to pack his backpack. He usually has a few minutes of free time before the bus comes. Jack the bus driver and Pam the bus aide pick Sam up about 7:25 for the 45 minute ride to Rotterdam. The school day starts off with breakfast, then the class meets for some circle time. This year they've been doing "centers", a different activity with each of the aides (Jim, Sandy and Stacy), the social worker (Angie) and their substitute teacher (Mrs. Conlon). Sam has been bringing home reading comprehension exercises that he does in school- read a story, then answer questions about it, and draw pictures relating to it. He has math tests in school, and usually brings home math homework each night. He enjoys gym the best of all the specials, although he often talks about the songs they sing in music. They have free time at the end of the school day that they have "earned" through good behavior. He usually arrives home around 3:15PM. The bus rides so far this year have been uneventful, and he's handling the distance and time on the bus well. Usually when he gets home from school, he wants a snack of some type, and he goes on the computer for a timed 15 minutes, or continues writing his book started in the morning, or watches a taped TV show from earlier in the day. Sometimes we'll drive to visit friends somewhere or walk to the library, or ride bikes. He usually does his homework right before dinner- it generally takes him about 5 minutes! He sometimes helps with preparing dinner or setting the table. Dinner is around 5PM. I'm happy to say his food preferences have matured somewhat. While he still mostly eats a seperate meal from what we eat, he now eats most kinds of fruit and a few vegetables. We are stressing the point that "big 8 years olds eat the same thing that their parents eat at dinner!", since he's been on a kick lately telling us the kinds of things 8 year olds do, in anticipation of his 8th birthday in March. After dinner he has 15 more minutes of computer time, then we often play a game or go for a walk. Bedtime is usually around 7:30, sometimes later. Lately he's enjoying having me read to him from "The A to Z Mysteries"- chapter books about 3 friends who solve mysteries that crop up in their small town. He almost always goes right to sleep, listening to NPR and thumbing through books.

It's not just us!

2008-09-19T11:20:00.000-07:00

I was having a conversation this week with one of my friends who is having problems with her age 9 NT daughter. She made the statement that "When she was a baby, I felt like I was the best mom. Now I feel like the worst!" I could relate a lot to what she was saying, remembering times when I felt like I was searching my brain for any possible way to make Sam "get it". The frustration involved with trying to be an effective parent when we can't figure out why our child is acting a certain way is probably the worst I've ever felt. You basically feel as if you have no control over the situation, that despite your best efforts you have failed to get through to your child on some basic level. Feelings that things are out of control are probably right on the money. It took our RDI consultant to help Tom and I realize that the control of the house was really in Sam's hands, and this gave him so much anxiety the resulting behviors were usually somewhat less than ideal. I've tried to give my friend advice based on our experience. Parental control is something all of us deal with, whether we have a special needs child or not. I advised my friend to start by controlling HER reaction to how her daughter is behaving. No sense adding fuel to an already burning fire. I also told her to take it slow, and not to beat herself up if she does "lose it". Since Tom and I have been trying to wrestle control back from Sam, I've found that my first reactions to incidents these days are a lot more controlled than they used to be. I'm actually remaining calm and dealing with things in a more methodical way than showing lots of emotion and getting all upset. So, for those of us that sometimes feel alone in the world of raising a special needs child, it's nice to know that many parents of NT kids struggle as well. The very fact that my friend wants to make a change to the way things are going at her house indicates that she is willing to change and make the adjustments necessary. In the end, most parents have a lot more similarities than they do differences.

A shout out to my "sisters"

2008-09-11T17:23:00.000-07:00

In an effort to be a more consistant "blogger", I'm posting my second entry in a week! (we'll see if I can keep it up!) I've been doing a lot of thinking about my group of friends lately. I really would not be as sane and as level headed as I am if it weren't for this group of 5 ladies. For the last 6+ years, they have grown into my extended family. They have seen me at my best and certainly at my worst. They've witnessed me morph from an uncertain mother of a toddler into a (semi) confident parent of a very unique child. I owe them a debt of gratitude for so many things, but a few deserve special mention. They have always been there for me, and have never seemed freaked out or troubled by me dumping any number of problems on them, even though most of them can't relate personally to what we go through on a daily basis. They have always made Sam (and all of us) welcome in their homes, camps, schools, etc. I will never have to worry that Sam won't have a friend, because he does- 10 of them to be exact. These kids are more than friends. They have grown up always knowing each other. Of course they pair off and some like others better or get along with one another differently at different times, but I would be willing to bet dollars to donuts that if you were to ask any one of them if Sam were their friend they would say yes without hesitation. The feeling of having a support system around me is beyond description. Knowing that someone is just a phone call away is often just what I need to get me through. Now, we sometimes have to struggle a little bit to see each other these days what with kids in all kinds of activities, finding jobs, keeping old jobs, juggling home committments, but the dedication to each other is still there. Things are not perfect. We've had our disagreements, fallouts, arguements, and misunderstandings. I've come to realize that people can't annoy you so much if you don't care so deeply about them. Some of us don't feel as close to each other as we once did. People change, places change. Change is going to happen. What I hope won't change is the fact that somewhere out on this planet are 5 gals who mean the world to me. I just want to count on picking up where we left off when we meet again!

Back to school, 2008 style

2008-09-04T08:57:00.000-07:00

Welcome to the first day of school, 2008. This is a year unlike any other is our previous existence. This is the very first back to school day that I didn't wring my hands over, stay up nights worrying about, or just plain dread. Of course there have been varying degrees of these negative feelings over the years, but I'm happy to share that I'm feeling none of them this year. Instead, I'm feeling confident, happy and very postitive about Sam's school sitation for second grade. The feeling must be contagious because Sam was feeling very upbeat this morning, too!
Of course we've traveled all over the "I don't want to go back to school" and "I want to stay home" attitudes for the past couple of weeks, even up until last night, when Sam had a tough time getting to sleep. (unusual for him) But this morning he put the nerves aside and was thrilled to proclaim to us this morning "I'm a second-grader!" He was dressed in his new Wall-E t-shirt and putting things in his backpack before I was even done with my coffee! We took some pictures out on the front porch as is our first-day-of-school custom, and watched kindergartner Olivia down the street wait for the bus for the first time. Then it was off to Bradt, a 1/2 hour drive that seemed to go quickly after not having driven it all summer. We counted 24 school buses along the way. It was so comforting, for me, parking in the familiar parking lot, going to the familiar door, saying hi to Mr. Jim and Miss Sandy. I'd have to say my favorite part, though, was seeing Sam's excitement in greeting his friends. He told them that he had missed them, and talked about some of the things he had done over the summer. Never mind that he just left most of them 3 weeks ago, but isn't this what NT kids do when they go to school? Excited to be wearing new clothes, interested in their friends' summer stories, glad to see their teachers? These are some of the emotions I can remember feeling when I started school each fall all those years ago. My absolute favorite part of the morning was when I had to remind him to give me a kiss and hug as I was leaving. The very fact that he was so caught up in his environment that he was forgetting to say goodbye to me indicates that we are moving in the right direction. I think about how different I feel than when I first left him at preschool, or when I was a nervous wreck putting him on the kindergarten bus. This feeling of first-day-of-school optimism may only be good for this one year, but I'm really enjoying it and counting my blessings!!

Guided participation (or how I'm learning to let go!)

2008-07-17T05:24:00.000-07:00

Our RDI consultant recommended that I blog about my feelings of difficulty with "letting go" of doing everything for Sam. I'm sure that this is a topic that every parent struggles with, not just those of us that have kids with special needs. I wonder if it would be any easier for me if Sam was NT. I'm thinking probably not- but the difference might be that he would have more built-in motivation to take his activities to the next level, he might pick up on cues from other kids better, and he'd probably be more heavily influenced by the outside world. (not that that is a great thing!) I commented to our therapist that every time I'm involved in an "activity" with him, I find myself really wanting to do things for him that he is not able to do, or has not done a lot of. I know this doesn't do him any favors, so I'm really trying to fight this. I think the key to it all might be "scaffolding" our activities better. I read a really good quote from an article our therapist gave us that has got me thinking. "Our goal in RDI is not to focus on what your child can do, but instead focus on what your child can almost do." I don't think I ever thought of scaffolding an activity based on this. I believe my focus has always been providing an activity that would foster connection between us. I never thought much about whether it was something he could already do or not. Of course one of the things we are trying to do with RDI is increase the connection he has to us, and ultimately to other people, but also it's about competance and gaining self-confidence. My impulse to go ahead and do everything for him is partly because it's habit, partly because I want to get it done (probably my worst downfall when it comes to RDI is that I have a hard time taking my time with things), and partly because I feel like it's part of my role as his mom. This last statement looks pretty dumb in retrospect because it's also a mom's job to recognize when to pull back and let their child do for themselves. Maybe I'm a bit over protective. I know the thought of Sam going into a situation where he wouldn't have the maximum of support terrifies me. (for example, returning to CES). I really need to take a look at setting up situations to work on those things he can "almost do". The more small things he becomes competant with, the more large things he'll be better equiped to deal with. The time to do this is now.
A great example of my difficulty in letting go is the bus transportation situation to school. All last year I drove him to Rotterdam, which went very well until the gas prices went through the roof. This summer, I was all set to once again take him to school in Guilderland, until I got to thinking. I knew we'd have a period of 5 weeks of summer school. I decided that he could stand it for 5 weeks, so we put him on the bus this Monday morning. He seems to have taken it all in stride. I've not heard any complaints from him, the bus garage or the school. I'm still uncomfortable with it for a variety of reasons. (mostly because I now have very little motivation to get out of the house- that job better get going soon!) So here's an example of how something I pretty much dreaded has so far gone well. I'm going to make sure I "spotlight" how proud I am of him riding the bus when I see him tonight.
An interesting aspect about the RDI process is that I'm really learning just as much about myself as I am about how to interact and guide Sam. It's worth it for this alone, I think. I don't think this is anything anyone can tell you about the RDI process when you go into it. I've felt like one of the major components to it has been growth for all of us. I hope it continues to evolve in this way.

Summer beginnings.....

2008-06-20T11:30:00.000-07:00

We have a bike rider! Thanks to my fellow blogger, http://thismom.blogs.com/this_mom/ (as if my blog even belongs in the same universe as hers- read for yourself!), Sam in now riding his bike! Without training wheels, without anyone holding on- just by himself. Stopping and turning we'll work on later! The New York City "Teach your Child to ride a Bike" program http://www.bikenewyork.org/education/classes/images/bny_learn_to_ride.pdf was really a great idea! A great thing about this is the now Sam knows how to start out by himself, one foot on the pedal, one foot on the ground, use your "ground foot" to get going, then find the second pedal. He'll be in great shape for bike camp in two week. He'll get to take advantage of a 1 1/2 hours a day for a week for practice.

Another new thing for the summer is I've got a new job! After a few months of soul searching thought, I decided my library job wasn't really what I wanted to do with my life. I enjoyed some aspects of it, but mostly I ended up doing things that I didn't even like doing, and for very little in the end, both pay and satisfaction wise. So I started dreaming of maybe getting a position doing some kind of genealogy research. I did some looking around the internet, and actually found a job being advertised by a company in Syracuse. The original job post was for more hours than I wanted to work, and it was for someone to work in Syracuse, plus by the time I saw the ad, it was a month old. So I sat on it for awhile, did a little research about the project, then decided to contact the person in charge of the project to see what the prospects were for volunteering. (figuring I'd get my foot in the door). Well, she was very interested in having me help out. Turns out they are in need of someone in the Albany area who is famliar with the repositories to look things up for them on an as-needed basis. We talked for about 1/2 hour on the phone. On my end, the project sounds just like what I'd be very interested in working on, not to mention the polar opposite of what I'm involved in now. Well organized, arranged in stages, specific areas being worked on, etc. The project coordinator is taking a couple of weeks to mull over where I might best fit in, and we are going to meet in Syracuse on June 30, while we are "vacationing" at camp.
I'm excited about this opportunity. One rarely hears of someone working in a genealogical or historical capacity for pay of any kind, but usually when someone is paid, it's as a private, free lance researcher. I'm not that interested in doing that kind of work. I'm more interested in being part of a team, working on a project that may actually get published and come to some kind of culmination someday. I'm looking forward to getting a closer look at their project and seeing how I can contribute. To get an idea of what some of the project is all about, check out this video:
http://link.brightcove.com/services/link/bcpid464120979/bclid1230998918/bctid1119221736

I'm really looking forward to this summer. I feel a sense of settlement, like all of us are doing what's right for us. Sam going to summer school with familier kids and teachers, Tom back to work pain free for the first time in ages, me with my new job! I'm excited about spending time with special friends and family and having fun! Last summer we ran ourselved ragged- this summer we have a little slower pace planned, but many opportunities to make memories! Hope summer looks bright from wherever you are too!

Family ties

2008-06-01T17:19:00.000-07:00

Today we got to see some pictures and videos of Carol's graduation from the University of Texas. She's a doctor now! While it's a very proud moment for the Doughertys to have a doctor in the family, I feel a bit sad for having missed the event, and, indeed, not even grasping the importance of it in the hustle and bustle of every day life around here. Seeing the pictures of 4 of the Dougherty siblings together and knowing Tom was not there reminded me of how far apart we all are, both in distance and in life. I have six cousins with whom I grew up very closely, and I rarely see them anymore. We were as close as siblings, seeing each other frequently throughout our growing up years in the 60's, 70's and into the 80's. Now, I know people grow up, move away, marry and have their own families, but the reality of long-cherished ties growing looser with the passing years is one that distresses me on a regular basis. I so often feel that keeping in touch with those that have been and are dear to us could be something akin to a full-time job. You often have to know when to let friendships go- you can't hang on to everyone forever.
It's supposed to be different with family, though. Blood is thicker than water, that's what is claimed. I know I have myself to blame for a lot of the neglect of the past few years. Sometimes it's just EASIER to be with friends from everyday life who know our situation, are used to it, and don't bat an eyelash when Sam crashes the wagon down the hill for 50th time. I often feel lots of anxiety before attending a family event because I wonder what these people who are so dear to me are thinking about me and my parenting skills. How can they possibly know what it's like to pick yourself up, get back on the horse, and try a big gathering that is bound to make Sam hyper with all the excitement, noise and people? Things aren't like they were in the old days. Lots of times it's just easier to avoid things.
To everyone's credit, I can tell that people try to be tolerant. This is a lot better than the horror stories I hear about other families with kids on the spectrum. Some people simply don't get invited to family functions, or don't choose to go because they are not sure how their kids will handle it. It all leads to feelings of isolation- like how I felt when I didn't see Tom in those graduation pictures.
So really what it all boils down to is this- I need to develop a thicker skin. I have to have the attitude that these very dear people are my family! They may not verbalize it to us, but they do support us, and if they don't, then they aren't the same people we grew up with. They can't understand what our life is like because they don't live it, but they can show us kindness and respect, and understand that we are truly doing the best we can.
I just wish everyone in both of our families could know Sam as Tom and I do. Intelligent, caring, fun-loving, focused (yes, believe it!), oblivious to the crap in the world, optomistic, and loyal are just a few of the words I can use to describe this very unique child! My life has truly been enriched by our experiences over the past 7 years. I hope I have your support for the next 7 and beyond!

The old and the new

2008-05-17T16:12:00.000-07:00

Today we had a chance to tour the new CES building. It's far from complete, of course, but we were able to get inside and view the progress. Sam was excited to see it, and also excited to see some old teachers and old friends. This excitement often manifests itself in the form of anxiety, so he says things like "I'm not going". Luckily we've adopted a policy of taking choices like this out of his hands, so it took him 3 seconds to get over the fact that he was going and that was it!

Anyway, the new school was quite impressive and looks like it will be really nice. I'm even ok with the fact that Sam may never be a student there. Last year that might have been hard for me to accept, but now with a school year of relative tranquility almost behind us, I have to say I'm satisfied with how things are going. Sam also accepts that he goes to a different school. He doesn't question it, although he did want to know which classroom would be his when he returned for third grade!

The decision has been made that he'll remain at Bradt for 2nd grade. Tom and I are happy with this- he's made a lot of progress this year, and our peace of mind is priceless. Knowing I turn him over to competant, caring people each day is an experience I had yet to have until this year. People always did their best, but really it was a matter of finding the right environment for him. Bradt has turned out to be such a place.

I don't feel like any of us are missing out by not attending school here in Castleton. Instead, I feel like I can pick and choose what we want to be involved in or not. We have cultivated enough relationships to be able to have friends in many situations, whether it be at the library, the school, or the Village Inn! Would it be nice for Sam to attend school in a beautiful new building with state-of-the-art tools? Sure it would, but only if it's gonna be the right environment for HIM! If he's not ready by third grade, we'll forge ahead in the BOCES system. I've learned in the past year that we need to do what it takes for all of us to be at peace with how we are functioning from day to day.

Parenting 101

2008-04-02T16:48:00.001-07:00

Well, Tom and I have reached an epiphany of sorts on the road to realizing success with RDI. We've actually come to realize that WE are going to be the ones driving this. It's not gonna be absorbed by osmosis, it's not gonna be something we wake up one day and know how to do, it's not gonna be something we read on-line. WE HAVE TO DO IT!! Duh! This seems like so simple a concept, but really we haven't been living it, although we've been "doing" RDI for a few months. With Tom home all the time, instead of getting on each other's nerves (well, ok, that does happen occasionally), we've actually been talking. About important issues. Like parenting.
With Theresa's guidance, we've even come up with things we need to work on with regard to setting real limits with Sam.

Surprise, surprise, Sam's been ruling the roost here for several years. (Maybe even since 3/4/2001!) I think we are finally realizing that the RDI guide/apprentice thing just isn't gonna work here in our house until the adults gain control. It's eye-opening when you finally realize that a lot of the so-called problems you are having with your child are largely of your own making. Theresa is very supportive and doesn't allow us to beat ourselves up over what we've BEEN doing, in fact she's thrilled we are coming to this realization and is eager to help us move forward.

In the past few months, I have gotten a taste of how impowering it feels to take action when some misbehavior is occurring, as opposed to sitting idly by and wondering what to do, or feeling guilty about doing something, or losing my temper, or any number of inappropriate things.

So, we decided about the things we could not tolerate any longer-
1. Back talk (which seems to have diminished since instituting the time-out policy a month or so ago)
2. The messes left all over the house that never get picked up.
3. The wandering around during a meal.
4. The trouble separating from me when I leave to go somewhere, or put him to bed (lately).

It's time to get tough and adopt a zero-tolerance for these things. For my part, I really have to work on being more consistant. Every time something crops up, we have to deal with it- turn off the TV, get off the computer, get off the phone and deal. Same action everytime. For Tom's part, he has to learn to stop making idle threats. We have to have dialogue, and support each other.

At least we've gotten to this point. It feels good to realize. It's gonna be hard work, and I hope I'm up to the task.

Surgery

2008-03-16T16:51:00.000-07:00

Well, Tom made it through his knee replacement surgery in good form. He ended up having a partial, which should hopefully make recovery time a little shorter. He's not the best patient, but he's tolerating it. Twice daily physical therapy, constant poking and prodding, having his left leg in a contraption that's meant to keep it moving, nurses and doctors coming in and out all hours of the day and night for both him and his roommate- a nice man by the name of Matt Corcoran. I told him yesterday he had no business being in the hospital- he should have been out standing on the parade route! So, Tom is doing as well as can be expected.

Sam's handling it pretty well. He's been around to play with old friends Lucas, Lauren, Ryan and Kayla this weekend, so I could get to the hospital and actually visit with Tom. I brought Sam over twice for brief visits. Tom's room is literally the size of a postage stamp. It's barely large enough with all the stuff in it for an able-bodied person to move around in, let alone someone with a huge cast-like thing on his leg, with a walker, being aided by a physical therapist. So Sam being in such a cramped space with all those bells and whistles was not the best scenario. He expressed to me tonight that he was sad because he wants dad back. I was glad to hear this because his usual thing is to be attached to me at the hip and not be as attuned to dad. Indeed it does seem strange around here without Tom.

I find I'm enjoying the clearness of my schedule. Because we were so not sure of what the operation and recovery would entail, I purposely didn't make any committments for the next couple of weeks that couldn't be changed. I may make a habit of this. It seems nice to have few plans, other than sticking close to home. I think it will help Sam get back on a more secure track schedule wise as well. I was thinking today about how things were when I started this blog about a year ago. It's nice to be feeling better about a lot of things- Sam and his school situation, and Tom finally hopefully getting some relief for the pain he's had all these years.

Mush!

2008-03-09T17:53:00.000-07:00

Even though there were a few bumps in the road this weekend (literally!) we accomplished the objective we set out to do- we rode on a dog sled! Just getting to Lake Placid was an adventure this weekend. I've never seen sleet like what was falling up there yesterday afternoon and evening! Things didn't exactly go as planned- Sam had some diffifult moments, starting with us leaving abruptly on Friday as soon as he arrived home from school. He had expected to leave Saturday morning, but we wanted to get a jump on the coming stormy weather. He had a couple of meltdowns on the trip- not wanting to use a quieter voice in a restaurant or hotel room, rejecting any food put in front of him, wanting to watch a TV show that wasn't even on, putting his hands over his ears any time Tom or I said something he didn't want to hear. I find it tough to be patient when we had planned the whole trip just for him and he was finding fault with all of it! I guess we should just be glad that most trips we go on turn out for the best, and we usually do ride out a few storms! The weather was truly horrible- even in a place where they are used to severe winter weather. We put the dog sled ride off until today so the weather had a chance to improve a little. Luckily it did- this morning it was only snowing. We had a nice morning-leisurly breakfast (Sam even ate 1/4 of a bagel!), took another swim in the hotel's indoor pool, packed up and headed for the frozen Mirror Lake. There was no one waiting in line for the dog sled rides (wonder why in the middle of the blizzard!), so Sam got to go around twice- once with each of us. I know he really enjoyed it, and will enjoy telling his friends and teachers in school about it. I supposed that's what its all about. We hear him get excited about trying something, and we want to make it happen for him. I don't want his anxiety about changes in scenery and routine to stop us from helping him to experience things. I just want to be able to better recognize the pattern here- a period of out and out rejection of the activity "No- I don't want to stay over at nana's OR go dog mushing", which leads to a kind of acceptance that it is happening, despite the protests, to a few more meltdowns along the way, just thrown in for good measure to make sure we know he's not giving up without a fight. When we are in the moment, hearing for the millionth time how he doesn't want to do something, it's hard to remember that there is a pattern to all this. And RDI training more often than not just goes out the window! So, while I would not give the weekend a score of perfect 10, I'd have to give it at least a 7. Hey, we did what we set out to do, we got away, we navigated a minefield of bad weather, and we got to go swimming during a blizzard- how cool is that????

Happy Birthday!

2008-03-03T18:53:00.000-08:00

How time does fly! Sam's 7th birthday is tomorrow! I can remember pretty clearly the night before he was born back in 2001. It was an exciting and terrifying time for me. The things we've all been through since then I could have never imagined 7 years ago. Back then I was a different person. I feel like I've grown so much more than Sam over the last 7 years! In the beginning, I was so fearful of being a parent. After a while, I grew used to it and started to really love having this wonderful, unique person in my life. As guilty as I sometimes feel for Sam being diagnosed as "late", I'm thankful for the 4 1/2 years we lived in the "normal" world. They made me strong and built me up to be ready for what was ahead. If someone had told me 7 years ago tonight that I would be the mother of a special needs child, I probably would have made a detour to the psych ward when I arrived at the hospital in labor! It all goes to show that there probably is some kind of big plan at work out there, something that guides us to our proper place in life.
I'm also so thankful for the life we have. We are so lucky. Sam is a bright, happy, and fun child. He lives life day to day with no worry about the future. We do that for him. We have so many blessings. I read about the situations that parents of special needs children go through- the fights with the schools, the dirty looks from total strangers (or even their own family members!), the father with 3 autistic girls laid off from his job and it breaks my heart. Tom and I are so lucky to have each other, supportive family and friends, and especially to have Sam. It will be a happy birthday for all of us as we think about the last 7 years and how our lives have been so enriched. I wish I could help those that are not as fortunate as we are, even if it's just to lend a sympathetic "ear". Anyone who reads this and wants to "chat", email me. The door is always open!

Getting a grip

2008-02-22T06:35:00.000-08:00

It's the end of school break week, and I think Sam and I are both ready for school to begin again! It's not that we've had that tough of a vacation, or that we are getting on each other's nerves THAT much, it's just TIME for the regular routine to kick back in again.

We've had a quiet week activity-wise. We had planned a trip to Howe Caverns today with some of our old playgroup friends, but we had to cancel because of illness and bad weather, as happens so often in the winter. I think boredom and being cooped up in the house has made some things challenging for Sam. Our biggest issue this week has been back talk, as it has been for awhile.

After meeting and discussing strategy with Theresa (RDI consultant) this week, she has advised us to be very firm in regards to this issue. I have to admit I've felt at a loss at times when Sam has been "mouthing off" to me or Tom, not sure how to control it. We've done all the usual things, like yell back, try to reason, keep silent, etc. Theresa advised us to put him in time out each and every time he talked back to us. Yesterday he was in time out 3 times- today so far once. While I certainly don't feel that we have a handle on the problem yet, I do feel empowered by making this small change. Maybe it's the idea of having a definitive plan- some kind of "go to" strategy for when this crops us. Maybe it's because Tom and I actually discussed this and are on the same page. I'm also realizing that this isn't an overnight or even 2 week cure. Things take time. Sam didn't stop throwing things overnight, and this won't go away in the blink of an eye either. But I do feel better knowing we have a path to follow.

Sometimes I feel overwhelmed by all the mountains we have to climb. Just when it seems we have a handle on one thing, something else crops up. My mind can sometimes go into panic mode, thinking that time is wasting and that Sam is slipping into an abyss we won't be able to get out of. My latest concern is that he seems so immature compared to other kids his age. I know he has a developmental delay and that this is par for the course. This is what we are doing RDI for, to help him master the things that his brain was not "wired" to do at the regular time.

Speaking of RDI and the expense, we received a small grant from Wildwood Programs to put toward paying our consultant. We were also talking to another couple the other day, friends of ours who have 2 kids on the spectrum. They were in disbelief at the fact that we had been denied for the Medicaid Service Waiver. This made me start to think about appealing, or reapplying for it. When we applied in October 2006, Sam had just started school in the "regular" classroom, and most of our future difficulties had not even begun. Obviously, since then circumstances have changed, maybe enough to reverse the initial ruling. This kind of funding would come in so handy to us- we have every intention of continuing with RDI and really feel the guidance of our consultant is a must, but there's no doubt it's a major expense.

(Second) Best Small Library in America

2008-02-04T12:24:00.000-08:00

Just thought I'd veer off topic for a minute here to let you all know that I'm employed at one of the libraries deserving of "Special Mention" for the annual "Best Small Library in America" award! We were asked to apply for this honor last fall, and getting together all the necessary ingredients for submission was a challenge, to say the least. For someone with zero grant-writing experience, it was an eye-opener. I've never considered summery writing to be among my strong points, nor do I consider gathering lots of parts together to make a comprehensive whole a talent either. Somehow, all the elements came together and made sense to the folks at Library Journal and the Bill and Melinda Gates Foundation! While we didn't win the grand prize (the the $15000 that goes with it), being mentioned makes us feel pretty special. For those of you who have been to the Castleton Public Library, you are familier with it's "homey" size and atmosphere. For those of you who haven't- let's just say several Castleton Public Libraries could probably fit into your house!
Just knowing how hard we work at the library to reach out and be a big part of the community, I'm so glad that we have achieved recognition from such prestigeous organizations. It makes me feel personally like I was able to overcome a big hurdle by getting over my fear (I honestly get almost physically ill when I think of all the work that has to be done to put one of these things out) of doing this. I feel much more competitive now that we DIDN'T win- it makes me want to try to improve our presentation for next year.
I can also see the good that may hopefully come from this small recognition. Already we have some positive changes coming in. We may be able to use this achievement as leverage when going to politians to get some more money. There's talk of a special dinner with representatives from Upper Hudson and local government. All this is pretty exciting, we'll see how it all plays out. My biggest question right now is: What will I wear to such a thing???

Smooth mornings

2008-01-25T07:39:00.000-08:00

This morning we did an RDI activity while getting dressed. Sam requested that I stay in his room to "help him" get dressed, so I used the opportunity to do some non-verbal communication. I really didn't speak at all once he got going with the dressing- just used gestures like nodding yes or no; used the "thumbs up" sign to tell he he did ok; did some pointing to bring attention to certain things, and cleared my throat a few times to get him to look at me. The good thing about it was that Sam didn't seem to think it was weird that I was not talking- lots of times when I try to do something like that, he always asks me why I'm not saying anything. It was great that this time he seemed to understand that we were playing a game, and that talking wasn't part of it. Another thing I really tried to be cognizant of was s l o w i n g down. This is one of the hardest aspects of RDI for me to get used to. I'm so accustomed to a goal-oriented lifestyle; gotta go here and do this within this time frame, etc. Even though the clock was ticking and it was getting close to the time we needed to be on the road to school, I stopped myself from hurrying things along.
I look back to what our mornings were like a year ago, and I can't help but marvel at the change. During his kindergarten year I did nearly everything for him, from preparing and nagging him to eat his breakfast to getting him into the bathroom to wash up and brush teeth, to dressing him, to packinghis backpack, to putting on his coat, boots, hat, and mittens, to walking him to the bus stop and putting him on the bus. I'm happy to realize that this year he is doing at least 1/2 of these things by himself! There is no doubt that he's much more capable this year, and also we all don't feel like we are handling school in "crisis mode" like we were last year. I notice that despite initial resistance to changes, Sam nearly always embraces new responsibilities. Maybe by next year he'll be making his own breakfast and actually eating it!

More about RDI....

2008-01-23T04:40:00.000-08:00

To continue with what I was writing about yesterday, incorporating RDI into our everyday lives is proving to be a challenge. I find myself thinking about every word that comes out of my mouth, and my thoughts range from "I'm not sure if what I just said was really "RDI-like" and I feel like I use the same phrases all the time." to "Shoot! I really should have not phrased that as a question (or made a demand). I should have made that a declarative statement." So really the best it gets at this point is an attempt to change the way I say things, and being pretty doubtful that what I'm saying is in any way effective. Perhaps I really should just opt for silence.

Another thing I have a great deal of trouble with is keeping my cool with Sam in situations where he's doing something (or not doing something) that needs to be done, like on a time deadline. This morning we were about 10 minutes away from bus pickup, and he was taking his time with packing his backpack, and getting his coat on. He wanted to put his coat and gloves on before packing the backpack, he was walking around touching all the door casings (something he just started doing recently), and just not being mindful of the time. (Like he ever is- I'm realizing as I write this that last year it would have been unheard of for him to even approach doing any of these things- so what do I have to complain about?) Anyway, this is the very thing I mean, I have trouble keeping my cool when things need to get done, so I grabbed his backpack and packed it myself. I wonder if this made him feel bad, since he has been packing his backpack himself. I only realize these things in retrospect, so I really need training in how to keep my cool in these situations.

It's hard to put everything you say and do under a microscope. I tend to be my own worst self-critic, so I am finding fault with lots of my attempts at communication. I guess I really need to live the whole "It's a marthon, not a sprint" philosphy. How could 6 years of one way of communication possibly be replaced overnight by another way?

Working at "getting" RDI

2008-01-22T08:10:00.000-08:00

Well, we've been working on hard incorporating RDI concepts into everyday life here at the Dougherty house. It really has been a lot of work- I find myself analyzing everything that comes out of my mouth when I talk to Sam. I often think about how I could have effectively dealt with a conversation better, or how I could have injected some "declarative language" into what we were doing. One thing I know I have a problem with is slowing down! I'm so used to multi-taking to get everything done that I have a hard time taking my time to do anything. I've always been bothered by how much in a rush we always feel, but I don't do anything to remeady that. Maybe now is that time!
Sam for the most part responds well to the RDI activities, but he is clearly uncomfortable with the pauses and silences that are part of how we communicate now. Our household has always been so filled with non-stop talking (let's face it- all three of us are chatterboxes) that it's quite a change to go the other way. He sometimes has difficulty transitioning to an activity, but nearly always gets into it and fully participates.

A fun holiday trip to New York City!

2007-12-23T10:52:00.000-08:00

Just wanted to report on a fun trip we took to New York City yesterday, December 22. It's become something of a tradition for us to take a day trip there for the last couple of years. This is the first year we felt comfortable bringing Sam. We always go with Tom's former college roommate Jon, his wife Kathy, and their 2 teenage sons, Brian and Sean. It's nice for us because Jon always drives all the way down. We park somewhere down near the Brooklyn Bridge, in the neighborhood of the federal building where Jon used to work. While Sam was slightly whiny about how long it was taking to get where were were going, he was not overly so, and enjoyed looking at everything once we got closer to our detination. Jon pointed out some of the landmarks, we saw a couple of huge cruise ships, and Sam enjoyed seeing all the ads on the buildings. We stopped at Battery Park so Sam could see the Statue of Liberty across the water, then parked and headed for the main attraction- the subway! Sam really seemed fascinated by the whole thing. He didn't want to get off once we got on, but we persuaded him pretty easily. We saw part of the holiday light show in Grand Central Station, then went to view the Christmas tree in Rockefeller Center. Sam loved going into the NBC store there! We ate at an Irish pub, and Sam was really well behaved. He drew all over the paper placemats at the restaurant, and ate a good meal of pasta and sauce.
Even with all the walking involved, it was clear he enjoyed the whole thing. He liked to be out walking on the street after dark and seeing all the lights. On the way home, we stopped in the Bronx on Arthur Avenue and had cappacinos and dessert at a little cafe. All this way past Sam's usual bedtime, but he did so well. He tried a cannoli and cheesecake!
I guess the key to it all was not trying to do anything ambitious. We kind of just played it by ear, and did whatever we felt like doing. Jon and Kathy were the perfect tour guides, and the boys are so nice to Sam. It somehow felt like the right time to take him there, and I'm glad he enjoyed it so much. You never know what is going to go well and what isn't, but I guess it's all about trying. Now I'd love to plan another trip down there- maybe in warmer weather!

Changes....for the better!

2007-11-29T05:11:00.000-08:00

Our fall continues to go well- I feel truly blessed that Sam finally seems settled in school and is enjoying himself. I'm seeing many changes in him that I never missed before, but it seems good to have him doing some things that maybe other parents take for granted.

For example, he talks about what happens in school a lot more than he ever did. Not all of it is negative, although he does like to talk about what happens when one of the other kids in the class gets in trouble. Yesterday he told me about how there is a field trip planned for after the holidays to the Empire State Plaza. I like how he's made a place for himself in his class, and he talks about interacting with his classmates.

He's also asking about a lot more "normal" kid things. He saw a commercial the other day for a stuffed Rudolph the red nosed reindeer that can be made at "Build-a-Bear Workshop". He wanted to know if there was one around here and could we go sometime! He's been talking about wanting to watch Christmas specials on TV and listen to Christmas music. He's excited for me to get the decorations out. In years past, he enjoyed these things, but he never seemed to actively participate- it was always someone else's idea.

About the only issue we are having currently is concerning "back talk". He lets you know he's displeased with what is being said by talking back in a stern voice. This is a great improvement over throwing things or knocking things over! Still, we will work on diminishing this behavior and replacing it with something more appropriate. We can use Rudolph as an incentive!

I'm really seeing so many positive changes- it's great! Often when things go along tranquily, I get complacent and just ride with it. I'm not naive enough to think we won't hit a rough patch now and then, but the good thing about this school situation he's in is that I have confidence they can handle it and move ahead. I really don't want things to go too well, lest the "powers that be" think he's doing well enough to leave the program next year.

We are looking forward to the holidays and spending time with family and friends. We're having a big family gathering here for the first time in many years, and Sam's got a few little cousins to play with. We are even going to take him to New York City for a day trip! I guess New York City doesn't seem so daunting after Disney World in August!

A Fabulous Fall!

2007-11-08T17:39:00.000-08:00

Once again, I find myself apologizing for not keeping up with this more regularly, but at least this time it's for a good reason! We have been having a really good fall! Most of this having to do with Sam's success at school. He's settled into his new school quite nicely, and we are seeing improvements daily. The year started out with us being uncertain of everything, and of course expecting things to be rocky due to the newness of the situation, but things began to even out about a month ago, and now Sam seems to be in pretty good shape.

For whatever reason, this fall he seems to be much more aware of his behavior. It seemed like most of the time last year he was not even aware of the things he was doing, or if he was, it didn't affect him at all, let alone enough to want to change what he was doing. This year maybe the difference is the smaller class, the more adult attention, the being able to work at his own pace, etc. We now normally get a good report home each day.

Tom and I had a conference with his teacher and social worker a couple of weeks ago. I can honestly say it was probably the first conference with a teacher that I had ever enjoyed, and not felt like I was either being 1. talked down to, 2. blamed for something, 3. asked what we were going to do about the problem, or 4. dismissed altogether. Both teachers expressed how much they liked Sam and how much he brings to their classroom. He's been tested in math and is able to work at a 3rd grade level. His teacher said she is going to be working with him on the computer. She also said he is going to be integrated into a high-level second grade reading group in January. Tom and I were surprised but happy to hear this, I hope he can deal with it.

The good part about having doubts about his ability to handle a situation is that I am confident they have the resources within this program to help him work through it. It's such a relief to know I can count on them to do their jobs, and help Sam succeed. I know they are not going to be calling us everyday making us aware of some atrocity that Sam has committed. I know they are simply going to deal with whatever comes up, and as a result, we are all feeling better about things.

Some of the things I thought might bother me about not having Sam stay at CES are not bothering me at all. I don't miss all the solicitations from the PTO for either money or involvement, I don't miss the daily exposure to the "cliquey" atmosphere. I enjoy being able to be friends (or not) with people on my own terms. I think Sam accepts being in the new school just fine. I've mentioned visiting the temporary CES and he always says he'd prefer to stay in the car. I know he misses a few of the kids he had in his class last year, and I think by the time they see him again, they will see a few changes. He's making friends in his class, although with all the kids from different towns, and no way of connecting with the other parents, it makes out of school connections pretty much impossible. Thankfully there are still the old playgroup friends, and neighbors down the street.

So much has changed for the better this fall. I'm so thankful for the opportunity to have Sam experience this program. Probably the best thing about it is that he can come back next year, same school and same teacher. The thought of being relatively stress-free where school is concerned for another year and a half is enticing!

New school year!

2007-09-10T07:26:00.000-07:00

Well, the new school year has arrived! The summer seemed to go very fast. We spent a lot of it going from here to there, and it felt a little hectic. We had a couple of wonderful, memorable trips to Niagara Falls, Lake Erie and Disney World. Sam enjoyed spending time with Taylyn and Jeffrey. By the end of the summer, it was definitely time for some more structure in our lives, although Sam seemed to handle the lack of routine and structure this summer pretty well.

School started at Bradt Elementary school in Rotterdam last Thursday, September 6. We decided to drive him to school in the morning (30 minutes each way) since the bus would have picked him up at home 40 minutes earlier than I would have to leave to get him there on time. The drive so far has not been bad- it takes me about 30 minutes to do it. Most of the traffic seems to be going in the opposite direction. I can get him there any time between 8:15-8:30. His teacher, Ms. Breeyear, and the classroom aides are outside to meet the students.

The morning routine has so far gone well. The two best things about it are the year of experience we had last year and the fact that I can now stay in bed until 6:30!! Sam being used to the morning before school routine seems to be making a big difference in how the mornings are going. I've encountered no resistance to getting ready to go to school. I also think he likes being driven to school. Somehow it seems a little more relaxed than having to walk down the street to the bus stop and try to keep Sam out of the puddles and dirt piles while waiting for the bus!!

Each day he has a sheet sent home detailing the activities they do and his performance doing them. The first day was a glowingly perfect sheet where the teacher wrote what a joy it was to have him in the classroom. The second day there were a couple of check marks indicating he did not follow directions. Tom and I both agree that mistakes are good where he's concerned. He's in this program for a reason, and we really hope his difficulties get worked on. He hasn't talked a lot about school yet, but he seems to like it. At least he's not saying anything negative.

He is tolerating the bus ride home well so far. It takes about an hour for him to get home. There are three students on the bus total. The driver is a nice lady, a grandmotherly type whose name is Dorothy. I'm sure by the time he's riding home on the bus, he's so tired from the day he's just zoning out. He arrives home at about 3:45, which is way late compared to last year's 2:15. It makes my afternoon seem really long- I was so used to having to drop whatever I was doing at 2PM to go pick him up at school.

So we can't complain so far. I know there is probably a period of resisitance coming up- once he figures out the routine and the newness wears off. I'm also sure they are used to that sort of thing in his class. I hope to be better prepared to deal with that this year than I was last year. Better to make plans for a rough period to happen now and not be caught off guard.

I'm thankful for all the experiences we had last year in kindergarten, even the negative ones. It has made a difference with my outlook knowing we have a year of school under our belt. There were so many positive changes that took place last year, it would be impossible to chalk it up as a miserable failure. It really was a kind of experiment to try things and see if they would work out. I like to think that as a result of that experiment, we've gained some insight into how Sam ticks, and can now address more specifically his needs in a much more appropriate setting. We just have to keep slogging through.

View from the beginning of summer

2007-07-06T00:56:00.000-07:00

First of all, let me let everyone know how sorry I am for not keeping up with the blog! As usual, things get busy and I get so involved with everyday life that I don't make time to sit down and update. One good thing is that in general, if I haven't posted, it probably means things are going fairly well, and I haven't felt the need for theraputic writing!

I was just reading over my previous entry on June 1. I'm happy to say that we are feeling better about things since that post, largely because the program we went to see at Bradt Elementary School in Rotterdam turned out to be a postive thing. We went into the visit there not expecting much, and we were pleasantly surprised.

The classroom is run by BOCES in a primary school in the Mohonesan school district. The whole school is only K-2nd grade. It's pretty big, but also nicely laid out and pretty convenient to get to. The class itself is going to have 8 students, with one teacher, Miss Breeyear, and 2 aides. There is also a social worker, and the usual army of therapists. While we were there, all the kids seemed to be functioning well in the classroom environment. The teacher had a good handle on the class, and the kids were all participating like you would expect kids in school to do. While the teacher was talking to us, the kids all did a craft project at the tables with the aides helping them, and we never even noticed how efficiently they did the project, no hassles, no issues. The teacher is young, and seems very nuturing and enthusiastic. She was very receptive to the idea of me coming into the classroom once in a while to help. The structure of the class seems very appropriate for Sam, and also there is the aspect of being able to adjust the curriculum to his abilities. I was able to bring him over the class to check it out the day after Tom and I were there. He joined right into an activity that they were doing, and he seemed quite happy with it. Honestly, he's nver had any trouble walking into a situation, the issues only come later once he's figured out what he can and can't get away with. But I am cautiously optomistic that this program will be able to deal with his quirks.

The distance from home is probably my biggest concern. Transportation issues are going to be worked out, but if it's going to be acceptable to us is another matter. The thought of him being on a bus for hours isn't appealing to us at all, so we'll have to see what happens. I'm not opposed to transporting him one way myself- hopefully it would be on the way home.

I feel somewhat better about how things were left at CES. I've come to realize that the bottom line is the quality of the education that Sam receives in the appropriate environment for him. I know I wouldn't feel as confident about first grade if he were staying at CES. It's just been demonstrated this year that they are not able to handle it. I'm annoyed that I was led to believe that it would all work out, and that interventions and strategies to help Sam only went so far there. I also realize that maybe our case is somewhat unique, we never had the preschool situation that would have prepared him for kindergarten, so he started out behind the 8 ball. There are times I really blame myself for not seeing his issues earlier, so he could have had a better head start. I'm trying to just look ahead and hope that we can play catch up in the next couple of years. I have no doubt that he'll be able to return to CES, and I hope I feel confident about that return. I'm glad that we won't have to deal with the whole temporary classroom issue (I've heard nothing positive about that so far).

I am feeling better about how things might go in the fall. I know it will be a rough start with the changes and everything, but I'm hoping at least this environment will be one in which he can learn a lot, have his issues worked on in a positive way, and feel comfortable about school. In the meantime, I'm hoping to enjoy the summer. There was no place left for him in summer school, which I'm glad about. I feel like we all need a break from the day to day grind. I'm not convinced that summer school does as much good as it might seem to. He will be continuing therapy 2 days a week with his therapists from CES, so that's a good thing. They were all very effective, and never had any problems with him. We'll be doing some traveling, and seeing some friends. Probably by the beginning of September, I'll be glad to hand him over to teachers!

Still not happy

2007-06-01T02:09:00.000-07:00

Many of you have been asking how the IEP meeting went on May 21. Well it was successful in that we were not "forced" to make a decision about Sam's placement for next year. We made it clear that we wanted to see more programs, and that we couldn't make a decision based on seeing one program. The rest of the meeting was largely the teachers and therapists reports, a good portion of it negative, but some positive. OT is going well and he's made huge strides in that area. Physical therapy is also going well- he's shown a great improvement in gym and they have a good system worked out in that they bring him to gym early and the gym teacher explains what they are going to do, and he is able to handle it well with that pre-set.

Although I am glad we'll be able to see more programs, I'm still essentially unhappy about the whole outcome of this first year of school for Sam. I feel like the end conlcusion that has been reached here is about as bad as I could have envisioned it being at the beginning of this school year. At that time, I couldn't wrap my mind around the possibility of Sam being "banished" to another situation. I remember telling Becky last fall that I was fearing him being "kicked out" and I guess I had good reason to fear that.

The truth is, for all the talk about how things in education have come so far in helping kids with issues and keeping them in the "least-restrictive" environment, I still feel as if we are somehow being shown the door and are unwanted at CES. The lack of an appropriate classroom at our elementary school sends a clear message to me that their interventions will only go so far, they are unwilling to do the right thing to educate Sam, that it's easier to pawn him off on someone else so they don't have to deal with it anymore. At various times this year, I've felt our family being blamed for this situation, like me, Tom or Sam has had anything to do with bringing this situation on ourselves. For my part, I'm sure that at times I've blamed the teachers and staff, and most definitely the administration, for their part in making us feel like second class citizens. I've spent the last 16 years living in this town hearing about how wonderful the school district is, being lulled into a false sense of security, thinking my son would be ok and do well. Well, the real truth seems to be that the district is only wonderful if your child can fit into the "normal" category. Sure, they will try to help out if your child struggles with whatever issues, but the interventions only go so far, and if they can't conform, you are out the door.

I've decided the best placement for Sam is the one that isn't going to happen. He belongs in his own elementary school, in a classroom that can offer the proper support. The question of having the "population" to justify such a classroom is irrelevant to me- I don't recall sitting around in 2000 asking myself if it would be the right time to get pregnant and have an autism spectrum child just so he would be the only one in his age group when it came time for school that would have a need for this type of education.

Lately I feel as if this is all I think about and deal with. I feel no peace as the end of school approaches. I remember the emotional roller coaster ride I was on last year as we finished preschool and started off into the unknown of kindergarten. I had hoped for a better outcome, but I guess I didn't pray hard enough or work hard enough. It's tougher this year for me to be optomistic, but I need to be for Sam's sake. I don't know if I wish I still had that sense of false hope that entering the perfect elementary school last fall gave me. I hope I have learned from the past year that cautious is probably the best emotion I shoud be feeling at the start of anything new. My frustration at times has reached a point where I just feel so helpless, I know I need to take a step back and take a deep breath.

We are going to see another program over in Schenectady next week. It's in an elementary school 27 miles away, but really we are looking for a teacher and situation we can be comfortable with, and one that is going to make a difference for Sam. The meeting to make the "big decision" is Jun 13. Can't wait.

Templeton

2007-05-17T18:02:00.000-07:00

Incidents like what happened tonight at the library make me realize how hard it is to exist in the real world sometimes. Sam was excited to go and see real live rats at the library. (the pet kind, not the wild kind) It was actually a program meant for older kids to discuss "Charlotte's Web" and someone from a local pet store was bringing in pet rats. I was hoping to just go in, peek at the rats, then head home. Well, we ended up sitting through a portion of the program, and Sam was very excited and wanting to touch and be up close. I managed to hold him off pretty well and to his credit, he did ok with waiting and even sitting and listening. (when I say he did ok here, you have to picture what "ok" means for Sam. I'm sure its nothing like what would be acceptable for most kids, but for me since he didn't just take off after the rats immediately and could be managed through verbal prompts for a short time, that was a success story) Anyway, when it came time to be able to touch the rat and feed it a sunflower seed, it got to be too much for him and he pinched the rat (kind of on the scruff of the neck like you would a cat) and then proceeded to scream at it a couple of times. Of course the thing was petrified, but luckily the handler had control of it. I'm sure she and everyone else in the room was disgusted by Sam's behavior, but I didn't stick around to find out. We left immediately.
I've gotten over the whole thing about how people react when things like that happen. They don't live my life or even know what it's like to deal with our issues, and frankly for the most part I don't care what a stranger's opinion is. I know the people who were there who know us will understand and probably feel sympathy for us. That's all that counts.
The one thing I'm still struggling with is my reaction to the situation. Somehow it doesn't seem appropriate to just not react at all (as if I could manage that!), but also blowing up and making a scene isn't the right approach. I guess what I'm getting at is that now I feel like my reaction has more to do with how bad I feel about his inability to handle things, than it has to do with being embarassed or disappointed that things like this often end in disaster. I'm reacting to the frustration that I feel when he can't do and experience things the way most kids can.
I don't know what else to do but to keep trying. It's like getting thrown off the horse and having to keep getting back on. I guess I shouldn't look at it as one day we are going to a program and it's going to be a complete success, perfect from beginning to end. I need to look at it as a process. Small things get better each time. Maybe I need to be able to pick up on cues better- know when he's not gonna be able to handle something and react before the problems occur.
I suppose I'm only human. I hope that each time we try something a little risky that the outcome is going to be a positive one. Maybe I just need to pick out the positives in each experience and learn from the negatives.

Reflections on my "career"

2007-05-13T06:16:00.000-07:00

Just some thoughts since it's Mother's Day......
I have to say the the years since Sam was born have been the happiest of my life. Before his Asperger's diagnosis, things went smoothly along, and our family life was very happy. I've always said if only Sam didn't have to go to school, things would be so much easier. But, I know this is not reality. Despite the difficulties we've encountered with school situations, I can't say things are "normally" bad. Most of the time we just plug along like any other family. Once in a while we hit crisis mode, but I guess this is probably the same for anyone.
I enjoy being a mom. I sometimes wish things could be easier for Sam, but this is the only thing I would change. I only rarely feel like things get too much for me to handle, and when those times come up, I try to take care of myself so I can recharge and go at it again. Many times when I'm faced with a tough battle, I find I get motivated more to find a solution. With things so up in the air due to school situations at this point, I find myself wondering if things will ever even out and we'll get into a groove that will work for everyone, or if things will always be a struggle.
As his mother, I know I'm biased, but I think Sam is a great kid. He has a unique way of seeing things,which I find fascinating and in some ways, inspiring. He enjoys new experiences (even though he won't even try pizza!)- he's always up for a car ride to somewhere. He likes animals, hiking, reading, drawing. He loves to write books. There are probably 50 of them laying around the house right now! The stories are about his friends in school, cartoon characters, or animals. He almost always puts himself in the middle of the action. He has a stubborn streak, often refusing to do things when asked. I've always tried to think of ways to make him want to do the things he initially refuses to do. I've been pretty successful with that. Sometimes it takes many repetitions to get something turned around. For example, I'm in the third week of giving him a list of chores to do on a Saturday morning. He is still resisting doing the chores, but he is asking for the list before I have a chance to make it! He has a kind heart, and so far, aside from the frustration that school has brought, I don't feel like his self-esteem has been too damaged by his so-called "disability". He even enjoys school! I recieve far less grief from him sending him his kindergarten class than I ever did when he went to preschool.
Finally, I honestly feel like advocating for Sam has got to be what my "career" was meant to be. I never felt motivated enough through the years to pursue a field that would get me a job that meant something (to me or anyone else). I often felt a little odd being an educated person who chose to just work at menial jobs and let her husband support her. So many times in the past I couldn't see the importance of something I was doing. Now I realize I had a very important task on the horizon. I'm glad and thankful to be able to devote the time I have to making sure Sam succeeds. For the first time in my life, I feel a committment to something that is long-term and rewarding. The pay may not be that great, but I'm motivated by the simple fact that I can't afford to fail. This has already caused me to move out of my comfort zone, to contantly have to re-evaluate how I relate to the world, and to adjust my attitude to everything.
No, there really isn't anything I'd change about my experience being a mom!

Update

2007-04-25T09:54:00.000-07:00

It's been awhile since I've posted, so I'll try to update you all about what's been going on. Tom and I had a conversation with the director of pupil personnel (known hereafter as Lori) and the princial at the beginning of the month. It went fine, but we did get the feeling that they steering us in the direction of finding another program for Sam for next year. Of course they make it clear that the decision is totally up to us, but so far I'm not really satisfied with the quality of the information I'm getting in order to make that decision. I 've felt from the beginning of this process that not much information is volunteered to you from the "powers that be". If you can think to ask the questions, they will be answered, but basically you have to pull them out of your head. I'm gaining more knowledge all the time about the right questions to ask, but I feel bad for the people who are just starting this process, or those that don't have the time or inclination to do the research necessary.
So an appointment was set up for us to observe a classroom in a nearby elementary school, not in our district. The classroom had 8 students and 4 adults. The children ranged in age from 6-8 and all appeared to be verbal. The program itself looked fine, some of the questions I had about things that were bothering me were answered to my satisfaction, but basically the same things that bothered me about the situation before I went in still did when I left. My biggest objection is the fact that he has to be sent out of our district. This feels like "banishment" to me, or like a way to pawn a difficult student off on someone else. The program looks as if it would benefit Sam due to its structure and tailoring toward Sam's specific issues, I just wish it could happen in our school.
I've had contact recently with 2 moms whose autism spectrum kids attend school in self-contained classrooms within their districts that are run by the schools themselves, and not an outside entity, like Questar. These 2 districts are of comparable size to ours. I brought this fact up to Lori, who says this idea is something that is re-visited every year, and so far has not happened due to a lack of population. I find it hard to believe that Sam is the only child at CES who would benefit from a self-contained classroom. I'm willing to concede that space constraints may render this change impossible while the school renovation is going on, but I think its something that needs to happen once the new school is finished.
My thoughts now are that I need to get a clearer picture of what the school can offer if we elect to keep Sam there. As Erin from CARD has let me know, pretty much the sky is the limit when it comes to designing an IEP. I just don't know if the interventions they can provide will be effective enough to make a difference in his behavior, and achieve the goal of integrating him back into a classroom situation he can handle. The program at Green Meadow school would definitely provide these kinds of supports, but I worry about the transition to a new school with new kids and new teachers, and then the transition back again. Granted, if he remains at CES, the building next year will be different, the teachers will be different, and he may only know one or two kids in his class (if he's even in one). But, he would still have the same therapists, and the same sort of routine, and contact with the same kids.
Luckily our annual meeting will not be for at least another 3 weeks, so I hope I have time to lay it all out and examine what really would be best for Sam. This is the bottom line, the most important thing of all. I'm not out to prove a point with the school district, I just want them to give it to me straight, so we can decide based on facts, and not something we make up in our heads.

RDI Information

2007-04-01T16:24:00.000-07:00

For those of you who wanted to know more about RDI (Relationship Development Intervention), here is a link to their website:
www.rdiconnect.com

Sam has begun a class that is being run using RDI principles. It's a sort of "art therapy" class, run by a certified dance therapist who is going for RDI training right now. I found the facility that is doing this class, the Damselfly Center, by searching the internet while I was looking for something that Sam might be able to do over the summer. I've done a lot of reading on line about various interventions for spectrum children, and up until I found this, none of them seemed "right" to me, or seemed to fit Sam's situation. Something about Theresa Haney and the Damselfly Center seemed to make sense when I thought about what Sam might respond to. He's always loved music, has a strong interest in dancing, and is just beginning to be excited about how he can draw and create things for himself. When I started reading more about RDI and the results that some spectrum children were having, it also sounded like a good fit. Only time will tell for sure, but so far Sam seems to really like the class and enjoys being with the children in the class.
I think one of the great difficulties about dealing with the autism spectrum (and probably, I would imagine, any disability) is weeding through the sheer volume of information out there. Not everything will work or even be suitable for every person. People will of course be passionate and advocate for those interventions that have worked for their loved ones, and its up to us as parents to decide what might be the best course of action for our child. I guess the best we can do is trust our gut and the knowledge we have about our children.
At any rate, I'm hoping that this is good experience for us.

Everyday frustration

2007-03-27T09:26:00.000-07:00

Another day in the life of the Doughertys. Things aren't going particularly bad or good, just some everyday frustrating things. One thing I'm very thankful for in life is my friends. They have been very supportive and helpful to me over the past few years, and I appreciate having that safety net around me. Occasionally, however, I come away from a get-together with them feeling more isolated than before I went. I know this is no fault of theirs, it's just sometimes I find it so hard to hear about all the activities their typically developing children engage in, how easy it is for them to get up and go to school each day, etc. It makes the distance between the life we lead here seem so far from the life other families lead. Sometimes I wish the most serious problem I had was what sport to sign my child up for, or what caterer to use for my upcoming party. I know that this is all relative- they have those things that they and their children struggle with, some of which we don't struggle with. They have never been anything but supportive of me, and welcoming of our family. Still I feel like maybe occasionally they get sick of hearing about the problems Sam has in school, the issues we have in relating to the school administration and teachers, etc. I know I get tired of it, and I'm living it! There are occasions when the job of trying to live as "normal" a life as possible gets very tiring for me. At times like these I just want to just live like the way I want to, and not have to fit my square-peg exisitence into a round hole. The truth is, I don't want my child to play in organized sports anyway, I don't want him to do things just because other kids are doing them or thats what kids do, I just want him to be happy, find a few friends, have a good time now and then. With these goals in mind and things broken down into snall, manageable units, I continue on and maybe will even live to enjoy another coffee hour!

A Better Week!

2007-03-21T13:38:00.000-07:00

I'm happy and relieved to be writing this from a much better perspective than last week. I feel like the happenings this week have been a very welcome breath of fresh air into our lives. Almost like the beginning of spring is showing us that things are hopeful. First, there was a successful day at school on Monday. No outbursts, no incidents. A good report. Then, off to school again Tuesday. I was sitting at the computer catching up on some email when the phone rang- caller ID said it was "Schodack Central". All I could think was "Oh no- here we go again." Fortunately it was not bad news- Mrs. Cook was calling to tell me that school was being dismissed early due to a flood in the school basement, and that I could come and pick up Sam at any time. When I got there to pick him up, he was very upset to be going home. He was not understanding that all the kids were going home- he must have thought that he was in trouble again. I tried to explain what was happening as calmly as I could, then we laughed about how it would be hard to be in school with water on the floors. By the time we got to the car, he had calmed down and was excited about the prospect of spending the morning at Kathleen's. It took me all of 2 or 3 minutes to get him calmed down!
The problem in the basement could not be fixed in one day, so school was cancelled again today. I really feel as if this time is a gift- like it's just the breather we need to step back and get our footing again. Sam has had a really successful few days. He's been cooperative, happy and a joy to be around at home. He's willing to "go with the flow" and do things as they crop up. Any anxiety he has over routine change seems to be pretty easily gotten over. So tomorrow he'll presumably go back to school, then Friday he's off anyway due to scheduled conferences. Sooo, in my mind I just think "One more day to get through, then a 3 day weekend".
Of course I'm still concerned about his behavior last week. I know it's only been a few days of smoothness, but I feel like each day that goes like this, is another day "in the bank". I know the meetings will eventually get scheduled, and we'll be taking a hard look at everything that has happened. I hope 2 things happen if things are still going smoothly when we all get together and meet.
1. That enough time will have passed since the problems that the teachers will be able to see them in context.
2. That I don't get too complacent just because things are going well. I have to remember that the rough spots always return- the best thing I can do is make a plan to be prepared for them!
I keep thinking about what Becky's husband Jack said to me at the library on Monday night- that often behaviors will get worse (sometimes much worse) before they get better when an intervention is working. I know he's right- I've read it many times. It's good to hear it from someone else, though.

Continuing difficulties

2007-03-17T07:50:00.000-07:00

I'm sitting here looking out the window at 2 feet of new snow as I reflect on the end of an incredibly difficult week. I've lost my composure on several occasions over the past few days, and right now I'm feeling shaky at best. This weekend is going to be all about getting back in the driver's seat- getting to a place in my mind where I can go forward.

I'm having a great deal of difficulty dealing with the fact that Sam has been unable to get it together and keep it together at school. I know a lot of his problems lately are due to the fact that he's stuck in one of these "down" times. It seems like when he's like this, there is a cloud in his mind that anything has a hard time getting through. Regular day-to-day functions are very hard for him, let alone learning anything new. By contrast, when things are good and he's functioning to full capacity, most things seem to be easy for him. The very hard part for me is at this point in time is how to get him out of this current trend.

I wonder what will happen at school. Of course I'm very nervous about sending him back there on Monday. His principal assured me that this is what they want, but I'm afraid of getting the phone call to come and pick him up. I hope to be able to clear my head and write down a few things for the upcoming meetings that we will have. I don't know what to do about school for the rest of the year- do we modify things in small chunks temporarily until things turn around? What about next year? I don't know what the right option is for his schooling. Will a smaller class help? It's all so up in the air. I hope that Erin from CARD will be able to help us with some new answers. Sam can't be the first child who has had these problems, so there must be some way of helping him.

I'm slowly working my way back to determination to not let Sam's diagnosis control our lives. It's so hard when we are continually beat down, but there's no way I can give up. I guess taking it one day at a time is truly what we need to do to get through this. That, and pray that the "cloud" in his mind will fade and some clarity will be restored.

Kindergarten so far

2007-03-13T10:20:00.000-07:00

Just to bring people up to date, Sam started kindergarten in September 2006. The transition was about as difficult as it could have been. We weren't prepared for how hard things were going to be and how many different strategies would have to be implemented. Right from the start the teachers and staff at his school were very eager to help and come up with a plan to make it work. They kep assuring us that they would work it all out, and of course we did whatever we could to help them along.

It took awhile, but by mid-November, things started to improve. Sam was given a regular schedule of sensory "breaks" during the day so he could take a breather, and have some down time. He was pre-set for regular activities during the day and also for when changes to the routine were going to happen. He started to respond to these interventions, and had a fairly smooth time of it from December-mid February.

Sometime around Valentine's Day, things started to deteriorate again. At first there were minor problems- he was non-cooperative, he was screaming out at various times during the day, he didn't want to do his work. During February there were 2 1/2 snow days, then February vacation, then his birthday on March 4. Since the return to school after the break, things have gotten steadily worse. His episodes of screaming and throwing objects have increased dramatically, culminating in the episode yesterday where he threw a pencil box (it appeared to be deliberate) at the teacher and hit her.

Of course I am deeply concerned about these "outbursts". I am saddened, frustrated and confused about why this is happening. His "fits" seemingly come out of nowhere- but we all know practically that this isn't the case. Something has to be setting him off, and he has to be receiving a huge payoff for it to constantly be reinforced. I feel as if I'm failing him in not being able to come up with an effective strategy to help him manage his behaviors.

It's always been his pattern from babyhood that he has had periods of time where lots of aspects of his life are difficult for him, then things get better for an extended period of time, then back to difficult again. I intend to make it a goal of mine to
1. Better predict when a "low period" is coming
2. Recognize it when it's here
3. Come up with strategies to use that will help him deal with the tough periods when they occur.
4. Help him to enjoy and acknowledge when he's enjoying success during his "good" periods.

I know I'm probably not making much sense, but I wanted to get across in a nutshell what we've been dealing with over the past few months. Most of the time, life goes on as relatively peaceful and normal. We enjoy the same activities many families do. Unfortunately, there are those times when we go into crisis mode. Our entire lives are colored by Sam's difficulties at school. I spend nearly every waking hour (and some non-waking!) trying to think outside the box about how we can learn to live with the challenges that Asperger's Syndrome brings, and not let it define our lives.

Hello and welcome

2007-03-12T18:52:00.000-07:00

Hello and welcome to our special blog. I have had thoughts on and off of doing this for awhile, and I guess I've finally been driven to it by the need to be able to communicate with people. Our family is very fortunate to have so many people who care about us, who care about Sam, and are genuinely interested in what's going on with him. One thing I find very difficult is keeping everyone informed about Sam's day to day life, about his successes and about his challenges. I hope to be able to document some of what our life is like, the good and the bad, and maybe keep the people closest to us informed. I also would welcome hearing from anyone who is facing the same types of challenges we are, to be able to share thoughts and offer support.

Our son Sam is 6 years old and was diagnosed with Asperger's Syndrome at age 4 1/2. Since that time, he's made remarkable progress on some fronts but has continued to face many challenges on others. Right now he attends kindergarten in a public elementary school and is in an integrated classroom (some children with special needs, some that are "typical") Our school district has been extroidinarily supportive and adaptible. He had a very difficult start to the school year, then after implementing various strategies, he achieved a good degree of success for several months. In the last month or so, however, things have gone downhill again and we find ourselves back to the drawing board. My fears are that he will not be able to "make it" in the public school, and that we will have to place him elsewhere, effectively ending what little social connections he's made at his school now. It's so very frustrating to me that we are failing him by not being able to get to the bottom of his issues.

Sam is truly a blessing to my life. Despite the frustrations and hard work that being the parent of a child with an ASD involves, I'm happier than I've ever been in my life. I feel I'm a fighter, and I don't intend to give up seeking the best for my child.