Life, Autism, Disability, and More

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12371944 Ally Friend Computer Mean Partnership And Help

I got two different emails in the same week, and it made me sad to read them together. One was a link to an article titled “Tips for Teachers: How To Deal with Upset Parents.” The other email was from a group I belong to, a parent support group. While it sometimes is a good place to exchange information, but sometimes…not so much.

Now, first off, let me say that I will not name any names, and the person who wrote this legitimately believes it, and, as such, I don’t want to mock her or make fun or her in any way. Instead, I want to sympathize with her, and I wonder what it took to make her believe this.

Here’s a quick quote from the post:
“They [the school districts] think we should be grateful they even allow SE kids in school and parents should just be happy for a ‘break.’
“Advocacy of SE kids can be draining.  You win one battle and they will hate you.  You think if you win one battle the school will change, but they never will until some powerful force forces them to do so.  I’d put the Office of Civil rights on speed dial. Don’t look to the state education board to be in your corner. The first thing they do is ask you what district you are talking about, and then they give the district a heads up.
“Each year, they have teachers and several school personnel go to a seminar put on by district lawyers who teach them how to get around the law.”

Now, I can understand her feelings, to some extent. Many years ago, we had a problem with my son’s school district. And we found out, after the “fight,” that the whole reason it was even a fight at all was because of one person – one person who was probably too scared to admit that she had made a mistake. People below her were willing to work with us. She, however, seemed unable to let them because it would undermine her perceived authority. It was a bad experience, and if we had continued to have bad experiences like that, we probably would feel like the person who posted the above message.

But…I have to say, I don’t believe that school districts are bad and evil. I don’t believe that schools seriously send their teachers to a session to learn “how to get around the law.”

What I believe is that there are bad people everywhere. You can have a bad director of special education. You can have a bad teacher. You can have a bad lawyer. You can have a bad police officer. You can have a bad barista. (Sorry, coffee is an important part of almost every SE parent’s life, amIright?)

As someone who “won a battle” against a district, I have to say that I have not felt hated. I have not felt like the school refuses to change. I have not felt like I need to constantly be in touch with the Office of Civil Rights. Maybe it’s because I’m lucky. But I don’t think that’s it. I think there’s something else there.

I think most people who are in special education are there because they care. Because they want to make a difference. They share things like the article written by Dave Wilson where he advises teachers to reflect on what parents say and what they mean, be open to ideas, ask for help, and communicate the positives. Does that sound like something that would be out there if these teachers and other professionals didn’t care? If they really went to training to learn how to avoid the law, why would they care about connecting with parents?

If you, as a parent, honestly feel that the school, the teachers, the district, even the state education agency is out to get you, you may need to stop. You may need to read that article and see if you can apply it to yourself. Do you need to learn how to deal with the school and its reps? Are you actually the problem?

 

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Share it – spread the word!

Actually, strike that. I just hate the phrase Debbie Downer. Why does someone else get to label you just because you share some bad news?

Because I have news for you. And it’s bad.

Last week, there was another tragedy in the special needs world.

A 19 year old student who had autism and was non-verbal was found dead on a school bus.

He had left for school that morning, riding the bus.

He never made it to school.

His mother never heard that, though, and when he didn’t get home at his usual time, she called, only to be told he had been absent.

By the time she got through to the bus barn and had people looking, it was too late.

They found her son on the bus, dead.

At this point, there is no cause of death, and while the driver had been questioned, there are still no answers as to what happened.

This matters.

This matters so much.

Simon is only partially verbal. I never know how to describe his ability. He can speak, but his speech is limited. He can often tell you when he wants or needs something, but there is really no true conversation happening most of the time, and I don’t know that he’s always saying what he thinks and feels, as opposed to just sharing lines from TV shows or movies.

Would Simon speak up if someone left him on a school bus?

Probably.

But would he know what to do if someone left him on the bus while he was asleep? Would he get off the bus when he woke up? Would he go look for help?

I don’t know.

I don’t know if I could teach him to do it, either.

Because of that communication gap, I can’t tell you what he would do. I can’t tell you how he thinks or what he thinks. I know that he thinks – he makes all sorts of connections, and he learns quite quickly – but I can’t understand his methods of thinking and making connections.

And that’s scary when news like this comes up, quickly flashes across the screen, and then is immediately forgotten about.

Where is the outrage? Where are the updates? Why aren’t other parents getting up in arms?

Well, probably because they’re tired.

Parents of special needs kids have worries like this all the time. They have to be on their guard, they have to be ready to jump up and fight the good fight, they have to worry. And that can really wear you down after a while. It’s hard to fight for other kids when you have your own kids to worry about.

Times like this, though, require that we get together, that we share the news, that we reach out to each other. We need to know it happens, we need to learn from it when it happens, and we need to see what we can do to stop it from happening ever again.

This means I need you, wonder-people who bother reading my blog. You need to talk to your kids, your friends, your neighbors, anyone you happen to encounter during your school journey. Make friends with your child’s bus drivers, teachers, admins. Do everything you can to spread the word about the tragedy and to use it as a lesson, to never let it happen again.