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.

Feelin' optomistic

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

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

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

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

The Green Raindrop

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

Wanted: Friends with "alternative" lives

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