A Recent Read Shining a Light on the Challenges on Raising Disabled Children

My mother-in-law a while back recommended a book to me that I considered (as a lot of people recommend me books and my TBR list is too long as it is). I put it on hold on Libby and when it was ready, I didn't have any other books to listen to so I said "sure, why not." I had no idea I would be crying in my car at school pick up and recommending this book to everyone who is ready to have their heart strings pulled a part and put back together.

The book I read was, The Things We Cannot Say by Kelly Rimmer (click on the image to get yourself a copy if you can't wait in line for Libby). It is a book following two women. One is Alice, a mother of an autistic son who uses an AAC device, has a very strict schedule, and big behaviors that the mom feels like only she can control. She has a daughter who is so smart she is overwhelmed with finding activities for her and a husband who works too much. Her grandma is on her death bead asking Alice to do a trip to Poland to discover all of her family's past. The other half of the book is a Polish woman, Alina, trying to escape the Natzi's with her love, Tomasz. The book is amazing. Trigger warning: there are some horrible parts to get through when reading this book as World War 2 was horrible, but not as much as other historical fiction about this time.

But that is not what I want this blog post to be about. I want to talk specifically about Alice and her autistic son, Eddie. The first scene of the two of them together is at the grocery store. Eddie is throwing a fit because the yogurts he eats has changed their design and he does not like it.

This scene alone got me hooked on this book. Because it is written through Alice's perspective, she is describing all of the workers, the manager, and the customers staring, asking her to get her son to stop, and saying they may need to call the police. She talked about the embarrassment she felt by everyone staring and judging her but also the helplessness she felt towards Eddie because she felt like he would never be able to understand that things like this can change at a moment's notice.

When I was a special education teacher, my first couple of years I had a behavior therapist who was with our class 70% of the day. He would mess with the students schedules and play with them like he was a kid. A lot of times, especially at the beginning, this would get the kids upset and behaviors would come out. One day, I said, "Why do you keep messing with them so much? You're making them mad!"

He then explained to me, how that was the point. Schedules get messed up, things change that no one can control, and learning to cope with that is so much easier in a controlled setting. This behavior therapist was purposefully altering schedules and practicing genuine peer play with my students and you know what? I saw them grow! I saw each student of mine learn from it. We found coping mechanisms for when schedules changed last minute, when loud noises happened unexpectedly, and when peers played a joke or a game with them. My students learned so much from the chaos the behavior therapist brought into the classroom but it led to ALL of my students being able to participate with their peers in halloween parades, holiday performances, and birthday parties.

I instantly thought about my time as a teacher and wanted to tell Alice, "teach him how to cope with change!!" We as parents or caregivers, try to make everything so perfect, but really we can't control everything. But we can control teaching coping mechanisms to our kids with things don't go as planned.

The next big thing I want to talk about is the AAC (Augmentative and Alternative Communication) device. Alice, has strong as an advocate she was for Eddie, she got too focused on making life perfect for him that she was babying him, which I think a lot of parents accidentally fall into this habit. Even Alice felt like Eddie couldn't understand conversation if it wasn't through his device. This is a huge example of presuming competence.

When we communicate, there is expressive and receptive communication. Expressive is how we

communicate to others, it can be with an AAC device, behaviors, gestures, facial expressions, etc. Receptive is how we understand what people are saying to us, verbally, sign language, body movement, facial expressions, etc. A lot of people think, when a person isn't giving eye contact and facing towards you, they can't hear you. But guess what? They can! So why is this important?

Everything you say in front of kids, you should assume they are listening and don't say anything you wouldn't want them to hear. For example, don't say something mean about a child because they are non-speaking. Non-speaking doesn't mean they can't hear you. The AAC device in the story becomes a handy communication tool for Alice's grandma, but reading about the frustrations the grandma still had when people talked down to her or ignored what she was saying because it didn't make sense to them, really hit the nail on the head.

Just because WE don't understand what someone is saying, doesn't make them not smart, it is showing that we aren't understanding their perspective. This is one of those classic, "get creative" moments and think outside the box to what they could be trying to communicate.

Does Alice find out her family's history? Does Eddie get the support he needs? Does Alina get out of Poland? I highly recommend this book and hope you enjoy it as much as I did! :)

Kayla Co