Autism Watch: 2007

Posts Tagged ‘schedule

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.

It’s too early to say if it was a success — unless I define success by the fact he went to school, stayed the day without a call and I picked him up on at the same time as everyone else. It’s also possibly too early to say that I am worried about the rest of the year..or is it?

He was SO excited about today. SO. excited. In turn, I was really happy for him. Thrilled that he was so happy to show his friends his new rolling backpack (“My backpack is so cool! It’s worth $40!”) and the Rainforest Cafe lunchbox he saw back in June and had to have for school this year…even though I had concerns it wasn’t sturdy enough. He talked about making new friends, about playing on the playground, and the cool things he was going to learn. I had every reason to be optimistic.

He wakes up today,  a few minutes earlier than I told him he should get up and get dressed, but he was smiling, and completely dressed in the outfit he chose for his first day. (It was 100 degrees here today, but he had to wear the new ‘softs,’ his loose track pants that I happened upon last week at Target for $5, mainly for home wear because he loves softs.) The softs went with the new Pokemon t-shirt well enough, and he even accessorized, wearing his engraved shark’s tooth necklace. Things were looking good.

He eats breakfast quickly, and watches the clock all morning. We leave, early, only to find out that the whole school population had arrived early, and we were easily 1/2 mile down the block….past construction, dust, dirt, and lots of badly-parked cars. But that didn’t deter him. By the time we got to his classroom, he’d said hello to a boy from his class last year, and when I got in line to say hello to his teacher, I put my hand on his chest and his little heart was pounding so hard and so fast. (Wahh, first threat of tears for me, he was so nervous.) He finds the seat with his nametag, while I have “the talk” with his teacher…you know, the talk where you say “My son’s got special needs/autism, he should be fine but if not, please don’t hesitate to call or email me. I’m available any time you have questions, or you can ask the teacher from last year or the aide. Oh, and he’s got space issues, so you should probably watch to make sure he doesn’t feel his space is being invaded.” I then found him sitting at his desk, looking at the “About Me” page that every child had to fill out. Hug, kiss, and I’m off…no tears, just a little prickling in the eyes at what a brave, big boy I have.

Fast forward to minimum day pickup time. Again, everyone and their family was there to pick up their child, and the crowd at the gate (by the time I finally made it from out south 40 parking space) was a wall of people 25 thick. Out came the first graders, and despite the principal asking people to wait, many parents and older siblings decided that the ‘please wait 10 minutes before entering to find your child’ really didn’t apply to them. (And I secretly wondered if these were the same people who’d triple-parked, parked at a 90-degree angle to the sidewalk, or otherwise abandoned their car where it shouldn’t have been because they’re so important that they shouldn’t have to walk as far as we mere peons did.) Finally, my son’s teacher was visible, and I could tell very quickly that I needed to get through that wall of people, quickly.

If only that was so easy. I had to step over strewn backpacks, squeeze around moving children, while I’m wondering why people who’d already gotten their children were still standing there, blocking the way. I got to ds relatively fast, but he was already shoving through the remaining crowd to get to me, with anger all over his face.

What’s wrong? What happened? “My lunchbox broke!”

For a split second, I felt so bad for him and wanted to rush it back to Rainforest Cafe and demand that an $8 plastic lunchbox should be sturdier. Poor thing doesn’t deserve to have such a prized possession break so quickly. But, no time for that — I had to deflect, re-direct, and get him to realize that an irrepairable broken handle doesn’t mean the end of the world for the lunchbox. “After all, it goes from backpack to lunchbox basket, back to the basket, then the backpack, right?” Crisis averted. Tomorrow’s lunch is already in it, minus the special crustless sandwich I’ll make tomorrow morning. Lemonade’s already in the thermos, and homemade cookies already bagged.

Moving on to discussion of the rest of the day. “It was pretty much bad.” Wow…where do you go from that? I asked why, knowing it would be a long list. No one played with him at recess. He didn’t have enough time to eat his whole lunch. He isn’t happy with his classmates, none are his friends. And, he was bored. Really bored. Nothing to do. But, the saving grace? The same aide as last year! We’d seen her in the morning, but I don’t think he appreciated her as much until the day started. Bless her, she gave him water and snacks and that’s what he talks about being the best part of the day, how she ‘cares about him.’ Remind me to give her a hug and tell her again how much I appreciate her and her genuine concern for my little guy. You can’t find people like her enough. Oh, and he likes his teacher, but she’s just part of the package for now, it’s too early to see what he really feels. (Should I be worried that in our two-minute conversation, when I tell her that no, thanks, I think he’ll be okay in any seat, but he has space issues…she says “There are 21 kids here…” I’m not sure if that was just a statement, or a teeny sign that my son’s going to need to conform and fit in? I am probably reading more into that, but given our history, I am hesitant. Thank God, his teacher situation was wonderful last year, though we did have an aide have to be removed due to inappropriate behavior towards him…no, not *that* kind of inappropriate, just a woman who shouldn’t be working with special needs children if she doesn’t understand that with them comes behaviors.)

Anyway….I think the problem I’m having is that he was so excited, so prepared, and I of course want nothing but good for him. To see the littlest thing take away from the expectations he had? How do you avoid it? And when it happens, how do you fix it? It shouldn’t be so hard. It should be fun. He should just be a child.

Anyway, he’s happily playing upstairs now, Pokemon strewn all over our room, watching Tivo’d Pokemon episodes. We talked about lunch, making friends, the lunchbox, etc., so I have hopes that tomorrow will be a better day. Advance preparation is such a big help, and now that I’ve seen his class, teacher, class location, and schedule, I have a lot more info with which to prepare him. Please, think happy thoughts for the little guy that he can fit in enough, but that the situations fits to him, too. I’m all for inclusion, but only to the extent that it’s manageable, fair, and makes sense. Sometimes accommodations need to be made, and sometimes those needs pop up out of nowhere.

Off for dinner…day #2 will come soon enough.


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