The Mystery

No two children on the spectrum are alike. The snowflake disorder. I forget about that a lot. I like to hear about other children on the spectrum; see where they were and who they are now. "He didn't say a word, and now I can't get him to stop!" is a common line amongst a group of mothers. I sometimes gauged Zachary on those who spoke of their children and their outstanding progress. This is what you do with typical children, you compare, and you realize that little Johnny might not be rolling over onto his tummy today, but the other kids have done it, he will too one day. You can do these comparisons, to some degree or another, when your kids are typical. It is almost natural.

There are those of you who know me in the "real" world to know that I am far from the silent type. I can come off as a know-it-all, and appear insensitive to those around me at times. I wish it were more true than it appears to be. The fact is, when these mothers speak of their children's progress, I become keenly aware of those who stay silent. They don't chime in, their children have never uttered a word, or very few at best. My heart aches for them.

I wonder what team I will play on one day.

We are approaching the one year anniversary - one year of intensive treatment. It is considered a milestone in some circles. There is some research out there that states the progress made during the first year of intense intervention can be used to gauge the child's likely outcome. This is hard. Zach has made progress, but not the unbelievable progress that I have seen and read from other children in similar interventions. Does this mean that his likely outcome will not be the chatter box I hear others talking about?

Another study I read indicated that language progression is not the clearest indicator, and that motor skills, both fine and gross, is a better predictor. I am not quite sure where Zach stands here. When tested originally, he showed little delays in these areas, he didn't even qualify for OT or PT initially in the EI programs. But I see he is slightly clumsy, and not drawing, and not throwing a ball with accuracy. This scares me.

And then he zippers his PJs about a month ago. Yeah. He initiated it himself. Sophia didn't do this until she was 4! Sophia has just begun to dress and undress herself independently this year. Mind you - that is with a lot of coaching and coaxing. Zach just up and did it on his own one day, without being asked, without being prompted. That's what Zach does. He just does sometimes. You could be working hard on trying to get him to progress in a specific skill - such as identifying his body parts, which is painstakingly slow these days. And voila, he starts doing things like zippering his pajamas which you have made absolutely no initiative to get him to address. These are the things that make me want to give the finger to science.

I run. I think most of you know that. Actually, I used to run, my new treadmill, not quite one week old, has already accumulated 1/10th of an inch of dust on it. Anyhow, when I got into running, I ran, and I ran often. I started to look into programs, I talked to other runners, joined a few groups, read bulletin boards, and a book or two. Form running, carbs, VO2 max, gels, speed drills, Asics 2100, sleep patterns, fartleks, trail running, 5 Ks, 1/2 marathons. After having a child, I was so grateful to just get outside and have a half hour to myself. In training for a 10 mile race, I had a 7 month old, who I was nursing. One day, after a particularly grueling night and a total of 4 hours of totally interrupted sleep and 3 lovely pieces of pepperoni pizza, the sitter came to the house, and off I went with Steve on a training run. Little did I know we were to run the full course that day. I was far from prepared - didn't eat right, little sleep, mentally unprepared, etc. I ran my best time ever. The day of the race comes. I eat all the right foods, have the right ammo (gel pacs, etc.) get proper rest, you get the picture. After climbing hill 2 of the race, at mile 7.5, I get the most debilitating cramp, and I do a trot for the next 2 miles that brings my pace down to a near walk. What the hell?

That is what this feels like with Zach. All this research, preparation, hard word. In the end, what will be will be, regardless of what we have done to try to produce a certain outcome. He is just a big mystery.

Those of you with children probably feel this way about your own typical children. You wonder who they are going to be - doctor, lawyer or Indian chief? Most popular, most likely to succeed, or no show to all pictures in the yearbook? But there are still things you can count on in their development - especially their ultimate independence. There is no taking that for granted with a child with an ASD. this is likely the ultimate in the ASD mystery.

Damn these Syracuse winters. We are not getting outside that much. It was a balmy 11 degrees with a windchill of -5 today. Not exactly calling you out to get some fresh air. I fear indoor air quality issues, and purchased a new CO monitor, and 2 new plants, and some high end air filters for the furnace. I am glad that the fireplace drafts into the house, and so is National Grid. We are painting and I make Steve use low VOC paints.

On top of this indoor air quality issue, I have a concern about our activity level. It stinks. We tend to sit around a lot more, although I try to engage in some activities over watching videos, but my arse depth and width indicates that we are definitely more sedentary. I think about if we lived in southern CA or FL how we could be playing basketball outside, going to the playground. Instead, we buy big houses so we don't stare at the same four walls long enough to drive ourselves nuts. Sophia has made her opinion quite clear that she likes her new house, and that it has enough space for her. She misses the attic of the old house, but really appreciates 3000 sq feet over 1400, even if 750 of that is in the wasted space of our two-story foyer. Personally, more space is nicer to live in, but makes me want to scream when it comes time to clean, which is pretty much always because there is so much to stinking clean. 8 sinks! Who the hell needs 8 sinks!

So we spend a lot of time indoors. And this translates to lost time developing some skills that we would if we were able to partake in outdoor activities. Zach needs more opportunities. I have to look into more physical opportunities for him - perhaps a jaunt back to MyGym again - or an additional of swimming lessons.

I am not exactly doing things by the book here. Well, at least not the ones others use. I love the book "A Bad Case of Stripes" by David Shannon. What we have here, is a bad case of stripes. The experts and specialists have been called in, the naturalists and homeopaths have been referenced too. We just need to find our lima beans.

OK - for those of you who haven't read the book which is likely most of you, I think the thing I am realizing in all of this intervention with Zach, is that there is no solution, no process, no formula to what is going on with him. It appears likely that some progress will be made based on these interventions. But no one is an expert in Zach, not even me. He is a mystery to us all, although few of the experts working with him will likely ever say that. My dreams of a child who can articulate their wants and needs to me, are my dreams. I cannot make them happen. Zach's verbal ability is likely based solely on if he wants that too. And that is the mystery - does Zach actually want to talk to us?