It's that time of year

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

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

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.....

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

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......

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!

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"

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

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!)

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.....

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

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

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

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

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!

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!

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

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

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

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....

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

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.