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!

Peace on earth, just not at our house

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

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.