I Can Do It - I Always Have

I'm hiding in my bedroom right now. I probably should say I'm taking a break, but the truth is I'm hiding. My bedroom has a lock, and I'm using it.

My autistic teenager was in full autistic bloom when he got home from school today. Not the loud, raging, scary kind of autistic, but the inconsolably obsessive kind of autistic. In a way it was sweet, because the thing he is obsessed about is the fundraiser for Autism Speaks that we are going to this coming Saturday. But even as sweet as that is, his need for me to read the poster to him and say that we are going on Saturday again and again and again ( by which I mean about every 30 seconds, aka constantly without a breath in between) outwore my very practiced patience.

My family has been fundraising for this event. The organization funds research and services for autism, and I have seen first hand the benefits of our ever increasing knowledge about autism. My son is 14, was diagnosed right around his second birthday, and in the 12 years we have been doing autism things, the information about how they think, how they learn, and how they act has increased exponentially, much to his - and our- benefit. There is still a long way to go, but here's a brief rundown of then and now in the life of my son. I warn you - if you do not live in close proximity to a severe autistic, the details are brutally unglamorous, but this is real life for many families. We don't talk about some of these things to "outsiders," because they are almost unbelievable unless you've lived them, but here I speak uncensored.

Then - he slept about three hours a night. Total, not consecutive. Needed to be supervised constantly or either destruction or disappearance into the dark of night would result.
Now - he sleeps eight hours most nights, and on the 2-3 nights a week he is up for extended periods of time, he mostly will stay in his room (a hard fought battle to teach him that) and while an adult still needs to be semi-conscious if he is up "just in case," it can be done without getting out of bed most nights thanks to deliberately un-oiled door hinges that let us track his movements through the house.

Then - constant supervision was the goal. Taking your eyes off him for even 30 seconds meant everything in the pantry might be on the floor, or the curtain rods would be pulled from the walls, or something like a candle, magic marker, or crayon would be in his mouth with big chunks eaten out of it. Two adults needed to be home in order for one of them to take a shower. We went to the bathroom with the expectation that we would spend the following 20 minutes cleaning up something in the house.
Now - He rarely gets into forbidden things anymore, and does not need to be watched constantly. He will still break things or make messes, but that is now rare rather than our daily life. Adults can go to the bathroom with returning to disaster.

Then - Anything colorful, liquid, soft, foamy, or not food that would fit in a mouth would be eaten. This includes all bath products, all glue products, chapstick, lip gloss, glitter, playdoh, snowglobe insides, baking powder, uncooked pasta, pillow stuffing, and pots of houseplant dirt. My girls spent their early years having to ask me unlock the cabinet in their bathroom whenever they needed soap, lotion, shampoo, etc. They loved lipgloss like all little girls, but generally only got to use it once before their brother would sniff it out and eat it. They learned to feed themselves later than most kids because all food was kept in a locked pantry.
Now - he will still occasionally eat a bottle of lotion or some shampoo, but if they forget to lock it up right away he usually won't touch it. The only thing we still can't keep in our house at all is glue and playdoh.

Then - screaming, running at top speed, jumping and flailing were his only form of communication. You can imagine how stressful the house was not only because he was constantly doing those things, but because he stayed so frustrated when we (understandably) failed to know what he was trying to tell us.
Now - he communicates with a few words, which are mostly difficult to understand, but he supplements with pointing or spelling, and also will write out words on a keyboard most of the time. He stays calm when he "talks" to us, and doesn't get very frustrated if we don't understand immediately. He'll even try different ways to tell us if we're not getting it.

Then - His one and only goal for school was to stay attentive long enough to be able to learn something.
Now - he can read many words, do simple arithmetic, write his name (not legibly, but still . . . ), follow instructions, complete routine tasks, and help out with chores.

Then - toileting was a nightmare. As with many autistic kids, he pooped constantly. Six, seven times a day most days, sometimes more, often very loose and runny. Many times it ran out of the diaper and he'd continue to do whatever he was doing. If it wasn't totally runny, he would often play with it or eat it. Since he also refused to keep clothes on at home, we would have to clean poop several times a day from couches, floors, walls, bedding, switchplates . . . Mornings were incredibly stressful because we had to race to try and get up before he did. If we didn't, we'd often have to mop, wash walls, clean upholstery, etc first thing. Between poop cleaning and the general mess cleaning mentioned earlier, we rarely had time to do ordinary cleaning. Keeping up with the crises was about all we could do.
Now - he still wears diapers and will not use the toilet, but I haven't bought upholstery cleaner in over a year, morning is not a race to beat him to his diaper, and he doesn't smear poop anymore at all, though there is sometimes a little leakage from the loose stools he still has. But since he will keep clothes on all day now, a change of clothing will usually take care of the mess. And yes, he still eats his poop, but not all the time. And as gross as that sounds, it is a vast improvement.

Our lives are not "normal," and much of our day is still dictated by what our autistic son will and will not tolerate. But we find now that with preparation, we can do many things we never thought we would be able to do with him, and this is all thanks to the influx of information about autism that has come in the last ten years. I have hope that he will be able to live a useful life outside of a residential center, which did not seem possible even five years ago.

So our family has been raising money for autism research. Because it is making a huge difference. And I'll be out of the bedroom in a few minutes, because that's just my life.