"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.

Cracking.....

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

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

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

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

A friend in need.....

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

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

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