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."