Notes from a Note to a Friend

Here are some excerpts from a note I recently sent to a friend. Saves me from having to rewrite:

Hey Moto:

Not sure how much you know / I’ve told you / you’ve heard about young Jackson. In March he was diagnosed with PDD-NOS (pervasive development disorder, not otherwise specified) which falls under the rather ominous umbrella of autistic spectrum disorders (ASD). The good news is he is a pretty mild case, the diagnosis allows us to get a lot of state-funded therapy and 5 hours per day at a special needs school that does some one on one therapy of its own, and he is making really good progress – its hard to believe he is the same kid he was 9 months ago.

This is where I typically go astray and write too much. I will get it in writing and share all the details with you at some point, but it’s a large project that I think will be cathartic for me and hopefully help somebody someday who finds themselves in a similar situation. For now, accept some generalities about Jackson:

Sensory Integration issues: Jackson can have problems when taken out his routine and faced with new surroundings, new people, and unfamiliarity. It used to be that when he went outside on a NYC street, I could not get him to look at me or interact, he was too busy trying to observe everything going on without the ability to filter out extraneous “noise” – the plane flying overhead, the dog taking a dump, the garbage truck on the next block or the streetlamp might all be found more important than the post he was about to walk into or the step off the sidewalk or the oncoming car. He is over most of that, and I take him on a rush hour subway round trip twice a week, and he now handles that with cosmopolitan savvy. He still has many issues – his shirt must be put on arms first, he has a weird thing about getting off the schoolbus in the afternoon, and a break in routine and new surrounding can still frustrate him, and he is prone to little tantrums. The difficult thing for me to have come to grips with is that his is a neurological disorder that manifests itself in bad behavior, and there is nothing willful about it. He simply gets out of sorts, can’t handle the situation, and reacts accordingly. Much the same way a kid with cerebral palsy may soil his diaper, and the use of discipline would seem silly, Jack’s behavior cannot be “corrected” through traditional means, he can merely be comforted and hopefully taught how to receive new input. Interestingly, I think Jack’s vomiting episode at the Vineyard 2006 was not a physical sickness at all, but actually a reaction to the extreme and unexpected change in surroundings, all the new people, etc. I don’t think he would have nearly so much of a problem with it today.

Motor Planning: This is the other real problem area for Jack, which is most notable in his speech articulation. He knows what he wants to say, but he is physically unable to make some sounds or to put words together sometimes. In particular, he cannot make the back-of-the-throat sounds like c, g, or k, and usually substitutes something from the front like a t or a d. Apparently, this is not uncommon, and is called “fronting”. As his vocabulary expands and he gains the ability to speak out of context (so cannot point or otherwise indicate what he is saying), it has become difficult sometimes to understand what he is trying to say, and frustrating for him and us. He is getting about 10 hours a week of 1-1 speech therapy and I believe it will be fixed, but it’s a tough process.

On the positive side, Jack is responding very well to therapy. Its odd, but he had to be taught how to play, and it is still work for him sometimes. Playdoh and paint used to be uncomfortable for him, and “pretend”, or representative play used to be nonexistent. Pretend picnics, a block representing a car (or even a small car representing a real car), dolls, or whatever were all nonexistent to him. He spent a good month or so where all he wanted to do was open and close doors in front of his face, and roll cars back and forth at eye level, consumed by the movement of the wheels. He now has all the play of a normally developing kid down cold, and our big question is whether to mainstream him into a normal nursery school next year (and lose a lot of 1-1 therapy) or move him into another special needs environment. His school right now absolutely sucks, and I refuse to discuss it, apart from the fact that 6 of the 8 kids in his class are “non-verbal” (which is exactly what he doesn’t need), and the school has steadfastly refused to switch him into a higher functioning class, despite our requests that started the very first day of school. It doesn’t hurt him to be there, but it doesn’t help, and every day is a wasted opportunity that will never be regained.

One day soon, I am sure, Jack will be considered a normally developing child with some quirks, as opposed to a highly functioning special needs child, which he would arguably be classified today. But it has been an incredibly arduous process, has put stress on Ellen and my relationship, caused me to lose touch with all but the closest friends, and taken time away from Olivia (who handles it all unbelievably well and is best friends with Jack), and I have left my job, though not officially, to take care of Jack full time, and to advocate for services, coordinate therapy and the like. Jack requires constant patience, and focus, as you have to understand the “why” of his behavior and work to avert tricky situations ahead of time. While in general it continues to suck every day, it has also changed my values and priorities and, a little bit perversely, has given me a real sense of purpose knowing I am the single person on the planet with the willingness and ability to make the changes necessary for Jack to be all that he can be. I am thinking seriously about getting a masters in special needs education and/or social work so I can more easily do something professionally in the area in a couple of years.

Hope that all is not too depressing. Jack’s progress was and is almost unbelievable, and we are comforted by the constant expressions of amazement by all of his therapists and teachers. Perhaps the most difficult part of this, as a parent, is wiping the slate clean of all your conscious and subconscious goals every parent has for their child. Social interaction will always be more work than fun for him, so he will never be the most popular or social kid, his speech may never be perfect, and he will never be a great athlete (its complicated, and I’ve left it out of this draft, but he, along with the majority of kids on the spectrum, have a quirky digestive system that makes affects their constitution and muscle tone, both of which are behind with Jackson. Coupled with his motor planning issues, the PGA Tour is even less realistic than it otherwise would be).

But you set new goals, because you have to, and you get a hell of a lot of pleasure from small accomplishments and short term goals that are met. And Jackson has become, over the last couple of months, a hell of a lot of fun to be with, with a good sense of humor (he makes his own jokes and cracks himself up), and a much more accepting demeanor compared to months ago.

Hows your ear? What?