Tell Her My Name Mama

Yesterday, we had a social worker visit at our house to chat about Cooper’s waiver and complete paperwork for the upcoming year. This is nothing new. We have people in our home constantly discussing Cooper. That’s the world of autism.

We used to have friends come over for dinner and drinks and now we have social workers and therapists come over and talk about autism. Oh, how life changes.

Anyhow, yesterday was especially chaotic. Even for us. Sawyer wanted to make jello. He wanted a drink and a snack and to color and to climb on me like a jungle gym. I am thinking part of it had to do with our cabin fever due to the extreme cold. But who knows.

I was trying to explain Cooper’s recent wins and also convey the parts that are still really hard…rigidity, anxiety, no self care, the isolation. Explaining autism. This is such a huge part of my life. We were on a time crunch so I was trying to go fast but be thorough. I felt like I was practically shouting trying to talk over Cooper’s Kindle blaring The Polar Express, his hums and squeals and his flaps. Our table was covered with his things. Pictures, books, a coaster, and a few DVDs.

Every few minutes he’d show us a train and run off. It was a lot.

Peppered into the chaos was Sawyer. At age four he is my challenge. He’s the one flushing things down the toilet, taping things closed, emptying out purses. He’s demanding, inquisitive, curious…all the things a little boy should be. And I secretly love it.

During these visits Sawyer typically peppers me with constant questions. The second someone comes here to talk about Cooper, Sawyer suddenly wants to talk about everything that has ever happened to him. He is always right next to me. It’s like he doesn’t want to miss anything.

At one point Sawyer was under the table, then on my back, then on my lap and hugging me.

Right about my breaking point he asked if he could tell me a whisper. He grabbed my face with both his hands and put his face up to my ear. ‘Mama, tell her my name. Tell her I’m starting school and that I’m 4 1/2. Tell her I’m here too and she can come to my birthday party if she wants.’

My heart just dropped.

I find autism to be overwhelming and I’m 34 with somewhat okay coping skills. Sawyer is just a little boy with a big brother with even bigger needs.

And just like that I was reminded how unfair this all is for him. It’s never about him. He has to be loud to be seen. He has to out ‘autism’ Cooper. Some people may see a wild four-year-old acting out. What they don’t see are the reasons why.

I hugged and whispered back, ‘absolutely. We can absolutely talk about Sawyer.’

For a few seconds we talked about him. I promised him we’d make Jello. I hugged him tight and brought out the markers and paper. For the rest of the visit he colored on my lap and chatted about his recent fishing trip.

And you know what? That’s okay.

I often say that our family has autism. Our family has special needs. It’s not just Cooper. We all feel the affects.

This was a good reminder.

Someday, Sawyer will understand that it’s a good thing it’s not about him. Someday, he’ll understand his life is different. That his can nots don’t outweigh his can dos.

Someday, he’ll get it. But not yet. He’s too young. Right now it’s not fair. He even sees autism as a good thing. At times he’s even jealous.

Someday, he will get it. And I’m hoping he gets it without the animosity that comes with this hard stuff.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.