Monday, December 9, 2013

Co-parenting Autism

Alex's father doesn't know much about autism. or Alex. You kind of have to know one to get the other.

At first glance, looking at Alex, you aren't going to see him. You will see a boy who doesn't look at you, who doesn't want to engage, who's finished with the conversation after he says hi. Once both parties say hi, his social obligation is fulfilled and he's ready to bounce away to the next hi. If you try to push him for conversation, he'll get more insistent in his attempts to leave while vocal stimming, screaming if it gets to the point of screeches. He has no real destination in mind. He won't notice the people, or objects, he just wants to walk. run. bounce. It's the walls he's after. He will run his fingers along the walls, he will follow the boundaries. It's movement he wants. Walking. Running, running is better. People? Why? He said hi. The only way to get his attention is to sit him down and if he's sitting down, he'd better have your full attention or he's leaving, or throwing whatever you sit close enough to reach. He has better things to do than sit here and wait to be noticed.

Knowing how to interact with Alex is not easy. Much of our mother/son time is spent like this...

I follow him around like a lost puppy while he ignores me. I lean in to kiss his cheek, he raises his elbow. I go to give him a nuzzle, he spins away. I try to talk to him, he pretends he doesn't hear a word I say. The conversations we have don't happen every day. Alex's father just witnessed his first one ever and I can't say that he would see it as such from where he was sitting. Our conversations are hard to decipher unless you see them regularly.

Alex's father sees autism as a person who doesn't live it. What he sees is the surface. The traditional "lost" child. The missing puzzle piece. "His mind may not be there, but he's still a growing boy." When the world looks at Alex, I know what they see. They see classic autism. Severe, non-verbal, cognitively impaired, developmentally stagnant autism. When the world looks at Alex, all they see is what they think autism is. What they are told autism is. a tragedy. The tragedy is believing what you are told without looking for yourself. The tragedy is that in seeing only what you think autism is, you completely miss Alex.

Alex's father loves him as only a father could, but it never crossed his mind that Alex could miss him. He provides support, he buys things. When Alex goes to his house, all he does is pace the floor, knock on the door, and cry for mama. What would Alex care if he wasn't here? People with autism don't have emotions, you know. Everyone who "knows" says so. They are missing that vital piece that makes them human, they are incapable of feeling. I'm telling you, that is not autism and that is not Alex.

Alex is a perfectly normal 11 year old boy. He has light brown hair, blue/green eyes, and autism. A perfectly normal 11 year old boy who misses his daddy.

After conspiring with Alex's mommy, I text his daddy. I told him that Alex misses him, that Alex is sad that he is "all gone" and that "all gone" were the words Alex used. I asked him to stop by on his way home from work one day this week and give Alex the boots he bought him himself, I told him Alex would love that. He was here less than an hour later, ready to visit Alex and to take him shopping for the waffle chair his OT said he loved.

Alex didn't look at his daddy, he didn't rush into his arms or hug him or tell him how much he missed him or even say his name, but the smile on his face said it all. I showed daddy how to work the stroller and packed a small bag with his duck, diaper, and wipes. I walked out with them and watched Alex sitting so well behaved in the passenger seat of daddy's truck, calm and ready to go. The look on his face as he sat there on the other side of the window, watching me wave as daddy climbed into the driver's seat was absolutely priceless.

And, I only called once while they were gone- to make sure daddy knew to set the stroller up before he got Alex out of the truck. I was informed that that was common sense so I put my hands up, backed away from the phone and enjoyed my hour off.

When they got home, daddy reported that Alex was a perfect gentleman all the way up until somewhere on the way home he started crying for me. Alex reported that he did have a good time, he was a good boy, he did sit nicely. I asked if he cried for me, he said "goodbye. goodbye." I said, "yes, you went goodbye without me, didn't you? But I'm glad you had a good time with your daddy." and I asked him, "Do you want to do it again?" His eyes lit with hope, "when? when?" A perfectly normal 11 year old boy who's looking forward to the next time he sees his daddy.

It's hard to let go, especially when their needs are so great, the danger is so real, and the communication is so hard but Daddy is almost 40 years old, a fully grown and capable man. I didn't know how to take care of Alex until I learned. I learned how to take care of Alex because I had to, because there was no other choice. It's about time he learned to parent a boy with autism. Baby steps. One carefully thought out trip at a time. The only thing we need to succeed is Alex's daddy's willingness to see the child that lives there. Autism makes it harder to see, but he is there. He isn't missing or absent. He just can't help you to connect with him as easily as most kids do. Daddy's going to have to learn and I'm going to have to let him because Alex needs him.

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