I’ve been sitting on this one for a while, but I think it’s still important to share how teaching self-advocacy skills to our autistic children is one of the most important things we can ever do. Our children need to learn to feel empowered at an early age so that they never, or rarely, have to worry about being taken advantage of due to their disabilities. Teaching them that their voices matter and how to frame their needs to the people who need to hear them begins at school age, and not just when they arbitrarily reach the magic legal age of 18 years old or 21 years old.
We need to presume competence, that they are capable and recognize self-advocacy skills as a need.
At the end of the year PPT last year (school year 2013-2014) I managed to get “the small bus” (as she calls it) because Sweet Girl asked for a ride other than the Big Bus that the other kids ride. At first she was upset because the small bus isn’t the van, but it’s also not what the other kids use. Clash. A main problem with the bigger buses is that they’re not sensory friendly. There’s also no shortage of bullies on these buses, especially for middle school, and the drivers don’t do anything about it. Additionally, neither of her sisters would be riding with her to help her tolerate the regular bus.
It didn’t take her long to appreciate it the small bus. She hears stories about the regular bus. She would have rathered I drove her in, but that wasn’t an option. The real push came with the after-school programs where she got the Golden Chariot… otherwise known as the Carrying School Children White Van.
“It feels great!”
She started campaigning for it for pick-up in the mornings and for everyday drop off. She simply said that it’s better. I had thought she was ok on the small bus but that presented sensory problems too.
And then I told her that her PPT was coming up. She insisted that she doesn’t need one, they’re horrible, they’re for babies, and she doesn’t want to attend. Ok, fine, you don’t have to attend, but you still have to contribute. And I told her that I was overriding her on the not-having-a-PPT thing. That prompted her to ask with all seriousness,
“What is a PPT?”
She asked it with the sincerity of really wanting to know for the very first time. I decided right then and there to explain exactly and bluntly what the PPT and IEP is for, and why she has it but other children don’t.
“You have a PPT to figure out an IEP. PPT stands for Planning and Placement Team. So when I say I’m going to your PPT, that means I’m going to your Planning and Placement Team meeting. We meet at the school in a special room to make plans for the school year so that we can work together as a team to make sure that you get the best education in the way you learn the best. OK?”
“Yes. PPT is a funny. What is IEP?”
“It sure is. IEP is what the PPT tries to make. IEP stands for Individual Education Plan. That means that your whole team including your mom, your teachers, your vice principal, and all of the people you see every day that help you learn things… we all put the PPT together so that we can figure out the best way to teach you the things you need to know to help you learn skills to be independent.”
“I am already independent! I am not a baby! I am at a high level!”
“Ok, yes. You are very independent and you are a great self-advocate. You are learning to read higher level books all the time. You do a great job. Do you want to know why?”
“I do not know.” ::grumpy::
“Because at every PPT meeting when we talk about the IEP, we talk about the ways that you learn best. We want to help you use your talents and your superpowers so that you can learn to overcome your challenges. Like, you know how math is hard sometimes?”
“I do not like math.”
“I don’t either. Join the party. But having an IEP means that your teachers will give you some extra help. Some of the other kids might find math really easy. Some of the other kids might find it really hard like you do, but they won’t get the extra help the same way you do. They’ll get help, but you get to learn at your own pace and in the way you learn math the best. ”
“In other subjects, you might not need any extra help at all because even if you have extra challenges in math, you might have extra talents in art. Did you know that not everyone can make wonderful art? I hear that you’re really amazing in woodworking class and a lot of the other kids are having trouble.”
“Yes, I like it.”
“During the PPT meeting, I also get to ask for things that will help make your learning easier for you. That’s why it’s important that you come to the meetings when you think you can do it or you talk about it with me and write something down for me to tell the rest of the team. Do you want to know why that’s so very important? YOU are part of your team too, especially because YOU have been such a great self-advocate and are becoming so independent. “
Suddenly her eyes lit up. I could see that she heard every single word I said and she was taking this very seriously. For the first time ever, we were having this conversation where she wasn’t making angry assumptions about the PPT.
“Do you want to know what else? I know how important it is to you that you get to make decisions for yourself. I know you don’t want me to make all of your decisions for you because you’re so independent. I don’t want you to think that I’m making bad decisions and choices for you, and that’s why I want you at the meetings or to talk to me about what will make going to school easier and better for you. I want you to be able to tell me how you think you can learn more easily. How you feel and think is important to me and to the team.”
She got excited. She had an idea.
“I need the van. My IEP needs the van every morning and every day. It is because of sensory. I need it for sensory. It feels better.”
She explained the why, and that gave me an edge in the PPT.
So at that PPT in October, because she asked me to request it (she now understands what PPTs are for :D) I advocated hard for it. I was told how difficult it is to get the van or any of the special service transport. They’ve always told me that. Luckily I have a good relationship with the DOT around here and they even called me to talk to me to see if the request was about my Sweet Girl. They made sure it was approved for the IEP.
And so within two days she had her first pick-up by the Golden Chariot.