Being a voice for advocacy

I’m breaking protocol slightly by writing this, because it’s about one of my children.  Don’t worry- I have not abandoned my core principles, I will be asking him prior to posting whether I have his permission to post it.  I want to write it all out first, now, because frankly it’s 5:25am and the house is still quiet. The wee tyrants have not yet risen to take over another day.

And so, here we go…

I want to talk about a couple of things that happened very recently, because they bring up a couple of Very Important Points.
The first thing happened during a review of Speedy’s* school supports.  This meeting took place because during last years Individualized Education Plan (IEP) meeting, we insisted on talking about our main concern for him:  the fact that one of his documented supports (and an important one for him) was not being provided. At all.

desk flipping
Image shows a drawing of a person flipping the desk in front of them, and shows the text: “Flip a table, even this meme isn’t enough to express my anger”

Soooo…. at the meeting which took place in the spring, we were promised that the missing support would start in the fall.  We all agreed that a meeting in late October would make sense, to review what supports are in place and whether his IEP is still relevant to him. We were quite relieved to discover that he is now getting all of his supports in all the right ways, and we updated the wording of the IEP to suit his current needs within the classroom.  Whew!

During the course of the meeting, his primary teacher told us about a really cool moment that Speedy had recently.  There was a group of puppeteers coming to the school to put on a presentation about being together in a setting with kids who might be different.

Speedy raised his hand with a true sense of purpose and said “I have a disability!  I am autistic and I have ADHD and there are LOTS of kids who are autistic and it means that their brains work a little differently!” One of the people from the puppet group replied, “wow! You really know a lot about autism”, to which he apparently looked at her and said “well of course I do! I’m autistic!”

Let’s unpack what just happened.

In that moment, by being SUPER EXCITED about autism (hint: he’s super excited about most things, and I’m so glad this is one of them), he just taught an entire room of children AND adults that we don’t need to whisper about this.  We don’t hide from it.  We celebrate our differences and we learn how to support each other through struggles.  The big, giant takeaway here is that being autistic need not be considered an embarrassment any more.  Feeling stimmy? Get those hands flappin’!  Feel like singing the theme song to Winnie the Pooh on an endless loop through Target? DO IT.  Want to carry a weighted stuffed animal everywhere because it helps you feel less anxious? That’s brilliant! Where can I get one?
The point is, neurotypical people have a LOT to learn about us.  Why not let us tell you what it’s like?
The follow up point, and a very awkward segue is, we as members of the neurodivergent community may have a lot to learn about people with other types of differences.

Speedy gets Occupational Therapy services at school a couple of times a week.  One of those times he is with two other students.  The other day, he noticed that one student was wearing a hearing aide, so he asked her about it.  Her face looked sad, and she seemed to feel sad about having to wear it.  He quite quickly told her that he thought it was AWESOME that she could use something like that to help her hear, and she started beaming when he said that.  In that moment, one small act on his part may have contributed to this one student feeling better about her difference.

proud mama meme

I’m happy to say that this post has been read and approved by Speedy.

*for our newer readers, Speedy is the internet-safe version of the name I use for my third son.  🙂

2 thoughts on “Being a voice for advocacy

    1. I agree- the whole room had goosebumps from the sharing of these moments. One of the people in the room commented that they enjoy working with families who have been such positive advocates for their children that the children have learned how to be advocates for themselves and others.

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