Autism Watch: 2007

Posts Tagged ‘tolerance

I don’t know if it’s just me, but lately, I’ve been really hesitant to join or post to autism e-lists too much. I know people are having a lot of bad days — myself included — but we’re not a very forgiving crowd at times. We want everyone to understand us, but we don’t necessarily extend that to others in our own community. (Much like my church, but I won’t digress.)

I’ll admit, I don’t always carry the party line. I’m a working  mom, which isn’t necessarily easy. I don’t agree that we all deserve governmental money to support our children when they’re in school all day and we could possibly work. I don’t agree that we should complain about every decrease in our free money if we’re still getting a pretty fair shake. (Personally, I’d prefer to give up the Starbucks than complain about the decrease in IHSS here in California.) I don’t think that a disability means my child should get free summer camp or other stuff not deemed ‘necessary’ when parents of neurotypical kids have to budget to make it happen, or not have it happen at all. Don’t get me wrong — our kids deserve all therapies that will help them, but I don’t know if summer camp and swim lessons are therapy.

Anyway..if you share an opinion that’s different, you’re often blasted. And not in a nice way. Another example? My son’s on medication. He had (has?) self-injurious behaviors that are very dangerous to himself, as well as severe mood swings that very adversely affect his daily living. On meds, the therapies we provide (keyword: we — because we are a two-income family, we have to pay for much of ds’s help on our own. Fair? Heck no. But what is?) have a chance to work. Without meds, well, we won’t go there. For us, meds are important. They are necessary. Sure, they aren’t necessary for every kid, nor do they work for every kid, but does it mean my kid shouldn’t be on them? Does that mean that I’m uneducated or lazy because I use medication? No way, yet I’ve heard that several times. I’ve heard that I need to read up on side effects, as though I haven’t. Ha.

Back to my topic.

Today I asked a question somewhere else online. A simple question trying to understand something, and the response I got was several curt sentences, as though I am stupid, punctuated with exclamation points. To quote Steve Martin, excuuuuuse me.

We can be a really tough crowd, high expectations of the way people treat our child or look at us, but not so forgiving with people that don’t agree with us or ask questions or point out a different side. It almost makes a person want to walk away…which plays into the whole ‘why isn’t the autism community united?’

One day on most autism lists will give you that answer. Spend a couple of hours in a meeting, and people are a little nicer because they’re face-to-face, but the gang mentality can still take place. We want tolerance, but we don’t give it. And we wonder why the general public doesn’t tolerate our kids.

One thing that strikes me as odd, as perplexing and disturbing, is that despite how we parents of autistic children want and expect tolerance everywhere — school, restaurants, airplanes, churches, anywhere — how quickly we turn when our child or our child’s class has a difficult experience with another special needs child.

I use the word “we” obviously as a generality, not a blanket statement because this doesn’t apply to everyone, but “we,” the parents of autistic children, are our own community. Within that community, we share our stories of school problems, insurance issues, health dilemmas. We seek support and information, and we commiserate, truly commiserate, with others within our community. But, apparently that stops when another special needs child bites our kid…pushes him on the playground…disrupts his studies one day in class…says something mean, and so on.

Now, I’m not saying that we should put up with anything that other special needs children do, but how can we rant about what a neurotypical (aka non-autistic) child does to our autistic child, when we do it ourselves? How can we expect others to be more tolerant if we exemplify “do as I say, not as I do?” Doesn’t real tolerance mean understanding that the other special needs child needs that same compassion we want when it’s our child causing the problem?

I’ve been on both sides of this. I’ve been the parent of the child treated badly by a neurotypical kid, the parent of the child punched by another autistic child, and the parent of the child biting another child. (And the child he bit? Autistic as well…but to be an equal opportunity problem, he has punched a non-autistic child, too.) I know how frustrating it is when you have to fix your child’s boo-boos that were caused by someone else. And I know how frustrating it is when you have the school call you to tell you your child hit someone else, and the parent is unhappy. Neither side is a pleasure. Maybe having been on both sides has helped me to understand it more — maybe it takes having your child be the problem at least once to truly get what it is like, the mix of emotions that you feel, the need to protect your child but the knowledge that he hurt another child, or hurt the child’s feelings.

I met a parent recently who wanted to call the police because a child in her daughter’s special-needs classroom bit her daughter, a couple of days after the child pushed her daughter. She was angry, and wanted something done. I didn’t blame her, I understood the need for a quick and safe resolution. But it also needed to be fair. And fair to both. Sure, the other child shouldn’t bite and shove, but where was the teacher? Why wasn’t there supervision? And why isn’t that supervisor, or the person who failed to secure it, the one in trouble? And why call the police? Did I mention that this child was 8? People don’t realize what calling the police does. It mars the child’s future, it leaves a nasty spot on his/her record, and that of the parents. And autism is widely misunderstood, so the special needs child who clearly needs more supervision and behavior training gets to learn to deal with the police, seeing his parents stressed, and all the legal hoopla that it brings. Who in the world wants to bring that onto another family?

In short, if we’re going to ask the world to accept our children, we have to be ready to accept our children.

Mine, yours, all.

If we want the general public to tolerate our children’s behaviors, we can’t be the pot calling the kettle black…or calling the police or making a scene with another family because their child displays behaviors due to their disability. If we want fairness, we have to display fairness in return. It only works when we all want the best for all our children, not only when it suits us.

If you’re faced with a situation where another special needs child hurts your child or upsets your child’s classroom, remember what it feels like. Remember that support is critical. Remember that this family may or may not have the support or knoweldge they should have, that you may have. Be a help, and in the spirit of a resolution that works for all, don’t take it out on their child. In the wrong situation, it could be your own. What kind of response would you want then?

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