Autism Watch: 2007

Posts Tagged ‘behavioral therapy

When you have a child with autism, life is one big plan.

You plan what to cook for dinner. Keeping in mind the few items your child will eat (can’t touch certain textures, smells, tastes….) you also still have to find food the rest of the family will eat, too.

You plan what outfit your child will wear the next day. Be sure the tags are off the shirt and pants, the socks aren’t too tight, the zipper goes up easily, the shirt and pants are as soft as possible, remembering that long sleeves are good on hot days and rain boots work with shorts. (You also plan to ignore the people that stare at the unusual ensemble, and you plan to appreciate your child’s unique sense of style, comfort in his own skin, and lack of concern over what others think.)

You plan what to take on a car ride, and what path you’ll take. You plan entertainment for the trip, which for us means the Nintendo DS, a car charger, a charger for a wall outlet, the case with the games and the buddy battle cord. You plan adequate music or a movie. You plan timing to avoid sitting in traffic, yet avoiding sitting and waiting too long upon your arrival.

You plan your daily schedule. You plan to fit in adequate cuddle time when they wake up, textra time in case of a pre-breakfast meltdown, time to say goodbye at school so you’re there not too long and not too little, and you’re sure you’re back at school in time so he’s not walking too far to the car. You plan your errands so he doesn’t have to go with you unless it’s a short one, and you plan the more fun errands for when he has to go with you so he’s happy.

You plan your social events. Can he handle the crowd, the noise, the smells, the lighting, the speed, the activity..the list goes on.

You plan who you’ll socialize with. You plan only on those who are accepting, understanding, and flexible. (That comes before ‘fun.’)

In life, it seems like people are either planners, or not planners. We were already planners or maybe it would have been a rough adjustment. It’s a known deal that if you plan the future too much, you can miss the spontaneity of the present. So do we parents of special-needs children, miss the ‘now’ because we’re planning the future? How much of the future do we change because we’ve planned so much? Is there more to be said for winging it? Maybe so, but I still think the ‘now’ would be so overwhelmingly difficult in some situations, or many, without the planning. So where does that leave us?

This last week has been a whirlwind of planning. All new appliances in the house, on a last-minute notice, meant a lot of preparation. Then moving bedrooms around to give ds his own room was even more preparation. (And I’m sad to say, we’re still finishing that, and the piles of things left to put away in ds’s new room is bugging him, but we underestimated the time involved in moving the multitudes of stuff and sorting through it all, deciding what to keep and what to give away..or what to sell in the infamous garage sale.) We’re 90% done, but still planning on what to put where, and when to do it. With Thanksgiving in two days, and a camping trip, even more planning: what are we making? what ingredients do we need to buy? what clothes to pack in the RV?

And some things you just can’t prepare. Tonight, on our way home from ds’s behavioral therapy, thump-thump-thump while on the freeway in the carpool lane. Flat tire. Ds was so afraid, and he chose that moment to have a meltdown. The police officer who stopped to check on us was very nice, and immediately picked up on ds’s fear. Spare on, and we were off in under 15 minutes. It was entirely unplanned, but ds and I had a good talk, as we’re walking along the edge of the freeway in the dark, ds kicking rocks and me watching for snakes. We can’t plan everything, and sometimes the unplanned things pan out in a way you don’t expect. I think I’ll stick with planning, at least for now, but I did learn to appreciate the unexpected, and if you think about it, what’s more unexpected than an autism diagnosis.

…what do you do?

To say the last couple of weeks have been eventful is an understatement. I just wish it was good events. Don’t get me wrong — there’s been a lot of good things that have happened, a lot of fun, but a lot is overshadowed by the difficulties we’ve faced with ds.

Bottom line, the little guy’s meltdowns are worsening. Supplements are being refused, and being casein-free hasn’t made a stitch of difference. We’ll keep on with it, but it sure isn’t encouraging that after almost a month without milk/dairy and we’re not seeing the change so many told us we’d see. We went into this knowing that we may not be one of the 46% or so that see dramatic improvement, but we did still hope. Being GF didn’t do it either. Supplements were doing it, but he’s refusing them anymore, so of course, the refusal is causing some regression. Makes sense, but I really hoped that the improvements would make taking the supplements that much easier. No such luck.

I’m still entirely behind the biomedical theories. I believe they work, just not for everyone…just like not everyone that gets a vaccine gets autism. Some people are just pre-disposed genetically to either get better, or to get autism. And maybe at some point they will again work for my son, but for that to happen, he has to take the supplements. Maybe then he wouldn’t swing at me, and maybe he wouldn’t get mad at just about everything.

Such a sweet, smart, and loving little boy. So adorable, good-looking, beautiful eyes, long hair, and funny demeanor…when he’s not blowing up because he doesn’t want to get dressed, stop playing Wii, put away a toy…

Meanwhile, therapies that may help are too costly to afford, unavailable in your area, not covered by insurance, or don’t work. Research is being done, but that will mainly help future generations of kids. What about our children today?

Don’t mind me…tiring, not so good day…a sock in the face this morning put me in a mood. Ds comes home from school in an hour, I’m hoping it’s been a better day for him. Autism program tonight, good timing. It’s almost hard to write about it, to sound negative, to share a not so cheery moment, but a day in the life of a parent of an autistic child is, well, not always so cheery. Maybe if more of us were honest and shared, the world would realize exactly how important finding a cure and funding treatment really is. And that if you’re a parent of a newly diagnosed child, you’re not alone.

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