Autism Watch: 2007

Do We Expect Too Much?

Posted on: October 12, 2011

In a perfect world, our children would go without nothing. They’d get every treatment and/or service they need, and we’d not have to pay anymore for it than anyone else with a disability or medical concern, regardless of income. However, as we all know, treatment for autism is still considered ‘experimental’ in many forums, other than ABA, and services are most readily available for those with unlimited bank accounts. For the rest of us? We hope and pray that someone will provide something, anything, and we become the world’s biggest advocates in order to make that happen.

Being an advocate can make an introvert a public speaker. It can give a shy person who doesn’t like to talk to strangers an eloquent speaking ability. It will make a low-key, laidback “go with the flow” mom get on the phone each day and push, in a way she never has before, for answers, and she won’t settle for anything but the right kind of answer.

This is good, right? Well, yes — because if we don’t advocate for our kids, no one will. But, there is a reasonable limit and no matter how desperate we are, I think we need to realize when we’ve reached it.

Today in a group I belong to, someone asked what kind of help they can get on vacation: could they require the hotel to provide a chemical-free room? Could they require the hotel restaurant to provide a nut-free environment? Could they require the state to find a place to find services for their child while on vacation, as in speech and O.T.? And my favorite, could they require the state to provide respite so the parents could go out alone.

You could have heard a pin drop.

No one answered.

There was a couple of coughs and throat-clearing sounds, but no eye contact with the woman who asked the question. It was clearly a mix of “I am at a loss for words” and “I can’t speak for fear I’ll say something I can’t take back.”

In the end, a calm person spoke up and said “Good luck with that. You’re on vacation, something most of us would give our right arm to take, so if it was me, I’d probably be super-glad I could take vacation and sacrifice the week of services.”

Other responses popped in my head: “It’s vacation, no one’s making you take it, why should the state be liable for anything? If you don’t want to miss out, don’t go.” But I didn’t answer.

Somehow, the conversation quickly changed to “Vacation? Cool! Where are you going?”  At first, I was relieved, ahh, re-direction, now she’s changed the subject, no one has to address it, and it was done so politely, she can’t take offense. Then as I thought more about it — and got irritated at her question — I realized that the goal of at least one other parent was to say exactly what I’d been thinking: vacation, an optional thing you don’t have to take, enjoy it, let your kid be a kid while you’re out, and if you don’t get a night out alone, oh well, it’s vacation!!

Then surprisingly, two  moms started making suggestions — call this number, ask this place, etc. There was obvious discomfort that we’d gotten back to the topic. Some people were “mutter mutter, I wish I could afford a vacation,” which was totally off-topic, and others were “Why are we helping her with this when we’re talking about VACATION? We’ve got people here who can’t figure out how they’re going to get through the next day because their child is still in diapers at 14 and the self-injurious behaviors make it so they can’t leave the house to run to the store, much less go on vacation.”

I stayed quiet. I knew no good could come of my contribution then, but I’ll share it here because the more I think about it, the more I think I did a disservice by not speaking up. Sure, it may have been seen as “tsk tsk! She deserves a vacation like everyone else!” but come on, let’s be realistic — no one ‘deserves’ vacation. Yes, everyone deserves to be able to relax, but a vacation is indeed a luxury. The state is not required to jump through hoops to keep your child’s services at three days a week if you voluntarily choose to leave the state; nor are they required to provide you a babysitter so you can go out at night.

Before I had BB, I took vacations. We have three other children, and as BB is six years younger than the youngest of the sibs, we always had children along with us. We didn’t get a night out away from them — a hotel babysitter, IF available, was cost-prohibitive. Plus, we were already on vacation, did I really need to have that added luxury? Nah, I’ve got a lot of years ahead of me to come back and do things I can’ t do with kids along.

This is where I think our requests take a nasty turn. We are definitely in the right when we request things that keep autism services on par with the rest of the medical-needs community; however, when we want MORE than others get, when we see ourselves as more deserving or require things that make life easy instead of just being necessary, we are not only taking money from an already too-small pool, but we are becoming one of those parents, the kind that make people say mean things and it makes it harder for the reasonable requests to be granted.

Flashback to a couple of years ago, when I spoke about a friend of mine complaining that she had to take her son to school each morning. “I have to get dressed!” Wow, poor you. So she made a huge stink and got the local district to bus her child to school each morning to the school she insisted he go to, even though there were many schools closer. Not only was her son on a bus for 40 minutes, but she negotiated it that on days she decided to get dressed and drive him, she’d get paid for every mile. Wow. On one hand, kudos, you must be a heck of a negotiator and the school is a pushover; if they agreed to that, then it’s their problem. On the other hand though? Come on, you are responsible for some normal parenting things and if you choose to move so far away from the school, why is it the school’s problem?

Those are the parents that give others a bad name. I want to be seen as an advocate, not a ball-busting bitch. I want to come to the negotiation table with people who aren’t defensive just knowing they have to meet with yet another parent; I’ve had them tell me before, on our first meeting, “Thank you for being reasonable. We do the best we can, and while it’s not always enough, we appreciate that you’re not yelling at us.” It always amazes me, because I don’t leave that room until my son gets what he needs — but it’s about him, not me, and I think sometimes we forget that. Parents of kids with cancer, heart problems, CP, etc., they don’t get free babysitters, zero co-pays and no deductibles; they have to drive their kids and if they go on vacation, they choose it around appointments or they don’t go. Why are we any different?

“But my son has special needs!” It’s not a weapon, and it shouldn’t be used like one.

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1 Response to "Do We Expect Too Much?"

Great insight. I do not have a child with special needs. However, I feel your no-nonsense, common sense approach to parenting is a lesson for us all. Sometimes it’s easy to get carried away and lose sight of the bigger picture. Thank you so much.

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