I saw something on Facebook recently where a mom of a child with severe autism was talking about the “last time”. Moms with normal (ha!) kids never know when that bedtime snuggle is the last, or it’s the last time you hold your little one in your lap. She was talking about how it’s different for a mom with an autistic child. She was thinking about the last time she had “normal” hopes and dreams for her son’s future.
It stuck with me. It is something that we go through. When you have to let go of your vision for your baby. You have to let go of the hope that he’ll ever have a job or a wife or kids. You have to adjust your perspective, realign your vision of the future. I distinctly remember the first time I went through it. The day I let the tears loose, poured my feelings all over my therapist—then later my husband—that my son was never going to have a normal life. The first time I accepted it.
Yeah, the first time. Life with a high functioning autistic child is different. When he was nonverbal, didn’t even point at things, didn’t respond to his name, I was worried but I didn’t give up hope. Granted, I was focused on keeping him alive and the autism was just a simmer on the back burner of my mind. By the time it took center stage, he was already starting to respond to therapy.
We could keep our hope. At that stage of the game, when he was really young, I couldn’t design a future in my mind past what anyone puts together for a kindergartener. My dreams were broad. Probably it would be a little different, but he was responding to therapy. I could cling to the idea that he would have something resembling a normal life.
The older he got, the more different he became. The harder it was for him to do normal things. One day, I just broke. I realized I had to accept it or spend my energy in a panic state that he wouldn’t improve enough. Which is what I did. I accepted our fate. I let go of my dreams and expectations.
I lived a roller coaster for years.
We didn’t keep our static state for long. He slipped into a decline before we evened out again. It didn’t hurt, because I had already accepted that his future was bleak. I worried (like most parents of children with autism) about who would care for him when my husband and I were gone. I worried, but I had already mourned.
Yoshi being Yoshi, though, he turned a corner. He started to show signs of adaptation. Without meaning to, I let my hopes for his future start to creep back in. Maybe he could find a place in this world.
It was like a balloon growing in my chest, once I realized it was there. I had stamped it out. I had fully committed to worrying about what was going to happen when I died, who was going to take care of him, where that burden would go. It was an enormous weight to lift. Yoshi would be able to care for himself.
I lived a roller coaster for years. That balloon of hope would grow, followed by a decline. The realization would set in. I would have to sit myself down and firmly let go of his future. Again. I would go back to worrying about his care—working out different possibilities like some parents consider different colleges or career paths for their kids.
Now, I have tried to accept that I will just have to wait and see. I cannot plan anything for his future at all. I let go of hope and fear. I had to get off that roller coaster. We will play the cards as they are dealt. Deep down (in the parts of my brain I am trying not to hear—the parts that still think about it) I assume his life will be somewhere in the middle. It will be like he is now: He can get by with a little help.
I try to not have expectations for his future, but Yoshi certainly does. It hurts my heart to hear about them. When he talks about his future family, I can’t help but wonder if he will ever be capable of marriage. He bounces from dream career to dream career. Each time he lands on one, my husband and I discuss how it would or would not work well for Yoshi. It’s almost silly. How many people grow up to be the things they dream of at eleven? But when Yoshi talks about what he wants to do when he grows up, I’m always analyzing it. Could he even do that? Will he ever have a “career”?
I know that I am lucky in the world of autism. Yoshi is high functioning. He has a shot. Sometimes people don’t even realize that he’s different. He can probably go to college (even if he has to stay at home and go locally.) He will probably be able to find a job someday, even if it’s difficult to land one that is willing to deal with his… idiosyncrasies. We will probably be able to help him set up his own support network.
But that sounds like I’m thinking about the future, doesn’t it? And I’m not doing that for now. We’ll see what happens. Yoshi is full of surprises.
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Very Nice post and highlights some things you may go through.
This was your best work yet!! There is nothing better than heart and soul in what we do and say.