Every special needs parent knows that there are times when you have to step in and advocate for your child.
Sometimes, it’s at a parent/teacher conference. Sometimes it’s an IEP meeting. Sometimes it’s on the sidelines at a sporting event.
Before our kids have a voice or can advocate for themselves, we have to be the ones to speak up and help others learn how to help our children.
I did just that today.
I had asked for this meeting with Howie’s teacher and his two aides. It wasn’t a demand but more of a “I need to come in.” It was becoming clear that they were having trouble understanding Howie’s sensory processing disorder and how it manifests itself at school. He was having more outbursts, more meltdowns and new physical aggressions – things we hadn’t seen in over two years. I needed to go in and help them understand my child.
I was nervous. I’ve never done anything like this before. They “knew” autism, but I had to explain SPD in a way that they would get him.
I read MOM-NOS’ post “A Hair-dryer Kid in a Toaster-brained World” three times while working on my presentation. It’s my go-to post always when trying to explain Howie’s brain. I knew if I could explain Howie’s SPD half as well as MOM-NOS explained autism, I would be in good shape.
I searched my brain for an analogy like hers. And it finally came to me.
I met with the special education teacher and the two aides on a cold rainy morning. The four of sat in a small office, and I handed them my powerpoint presentation.
“My goal here,” I said, “is to help you understand Howie and how his body works, so that you can help him understand how his body works. Especially in the classroom.”
My presentation was titled: “All About Me and My SPD”.
I gave them a quick definition of what SPD is: a neurological disorder that causes a virtual traffic jam in the brain. I explained how it’s like autism in that way, but SPD is more about how the brain interprets the information from our senses. When it gets mixed up, it can cause a child to behave inappropriately.
I talked about sensory seekers and avoiders. I asked them to think about their responses in certain places. Do you like crowds? Heavy blankets for sleeping at night? Do you get nervous around lots of noises? Are you easily overwhelmed? I shared my fear of stores like Costco and Wal-Mart – how just being in those places made me so uncomfortable that I choose not to shop there.
I told them that Howie was both a seeker and an avoider. That we describe him as “being uncomfortable in his own skin”. And his aide gasped a little.
I made sure they knew that Howie has had these issues since birth. How I knew from Day 2 in the hospital that he was different because of his non-stop crying. That he wouldn’t sleep without touching someone. Stage 3 baby foods made him gag. He cried at loud noises and had no sense of space. He asked for hugs all the time – not out of love but out of desperation. He couldn’t sit still without moving and would run laps inside our house for hours. I told them he didn’t sleep through the night until he was four.
And again, they gasped a little.
We talked about his duel diagnosis of sensory processing disorder and autism spectrum disorder and how they work hand in hand. If you understand why Howie feels like he does, then you can understand why he behaves like he does. And I reminded them that we’ve worked with several occupational therapists to get to fine tune his therapy. This was not stuff that we made up.
We discussed the eight senses – sight, smell, taste, touch, hearing, vestibular, proprioceptive and the introceptive sense. I explained what each one was and Howie’s reaction to it all. We talked about that he never gets dizzy, how eating is hard for him, and how he drinks juice constantly to feel “full”.
And then, it was time to help them help him.
I called the slide “What Does Howie Need for Success in School?”
“We know Howie’s favorite thing is Hot Wheels Cars, right?” I said. “So let’s think of him like a car.”
•He needs to fill that tank.
•He needs to fill the tank without being removed from the classroom as much as possible
And finally, I gave suggestions for “filling his tank”:
•In the classroom
•Out of the classroom (when needed)
I concluded the presentation with a list of books and resources for them, with the strong reminder that Tim and I are their best resource. Use us. We have been living with this for 5 1/2 years.
We talked for a while about immediate changes to his schedule. No more mandatory breaks at scheduled times, with the exception of the one first thing in the morning. They needed to be on demand and honored. We talked about the need to listen to his words and watch his body. And we shared that he is already becoming very self-aware – knowing that he needs putty at circle time to help him focus and “jobs” to make him feel proud and accomplished. His aides said that they are encouraging his classroom teacher to call on him more, that just because he’s not looking her in the eye when she’s teaching, it doesn’t mean he’s not attending.
I stood up to leave and the special education teacher said to me:
“Thank you. I see your child in a whole new light now.”
There comes that time when we need to take a moment and step in for our children. No one else will do it for us. I believe in my son. I know he will move mountains if he’s given the opportunity to try. I needed his teachers to see what he could do when he is feeling like Howie.
I know in my heart they will get it.
And if they don’t, I’ll be right back there again leading the way. I believe in me too.
“Try what you need to try,
No one should question why,
Believe in yourself,
Believe in yourself.
Folks may say you’re different,
That you’ve gone and lost your senses,
But the world is yours to walk in,
Go ahead and leap the fences.
And you’ll see,
Believe in yourself
And the world belongs to you and me” – Believe in Yourself from Sesame Street (performed by N’Sync)