A "Normal" Day

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

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!

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

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

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

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

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....

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..."

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

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

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!