The Fears — and Hopes — I Experience as the Parent of a Child on the Autism Spectrum
I’m scared. There I said it. I’m the mother of a 5-year-old boy, Mason, who has autism spectrum disorder. Mason is beautiful and wonderful in so many ways. I try to come off strong and spend every day of my life fighting for him. But every day on the inside, fear eats me alive.
“But you seem so strong,” everyone says. But my fear is also strong. From the moment I wake up until when I go to bed, the thoughts run across my mind.
Will he speak today? He’s been pretty quiet the last few days. Is he mad at me because sometimes I don’t know what he is trying to say? Does it feel like he’s trapped inside his own head and he’s screaming to get out? Will we ever have a full conversation?
What is he doing at school right now? I wish I knew what was going on. Is he having a good day? Is anyone being mean to him? Is he happy? Is he being treated well on the bus? Is he smiling as he sits in his seat on the ride home?
Is his health OK? From what I can see it is. We’ve had a lot of tests done — is there anything I’m missing? Does his body feel OK? Is he healthy?
Will he ever fall in love? Will he ever be in a romantic relationship? What kind of friendships will he have in his life?
Where will he be in 10 years? Will he be OK living with us? Or will he be independent?
What happens when my husband and I pass on? Who will take care of him then? Who will know how to take care of Mason the way we do? Will he be scared? What will life be like for him when we are gone?
Fear. Those are the fears. Every. Single. Day. Those fears are strong.
“But you seem so strong,” they say. In my experience, there is one thing that is stronger than those thoughts. And that is hope.
For me, hope goes a little something like this.
Sure, he didn’t speak much the last few days, but did you see the way he was focusing on my mouth when I was talking today? And the way he used pictures to talk to me today? He is really starting to get the idea of communication, the social exchange. With time, and therapy, we will be able to communicate more. I won’t give up. I’m hopeful.
When he gets off that school bus and he looks at me and smiles, I really do see the happiness in his eyes after he comes home from learning in an environment that’s suited to him. And I’m hopeful there will be more good days for him ahead, and he will continue to grow and progress. We see the change in him.
I see him run around the house and outside in the yard, smiling and laughing, playing with his toys and his brother. Sure, he has his health issues, from non-convulsive epileptic activity in his brain to sinus issues, but we’ve done every test and explored every avenue we could when it comes to his health. And things are getting better! I am thankful for his health, and I am hopeful that whatever future problems arise, we will be able tackle them the way we have with these ones.
As for love — I see love in his eyes every day. His love for me and his dad, his little brother, extended family members. His love for friends and neighbors and therapists. I see it. I don’t know what the future will bring in terms of relationships, but I have hope. I have hope because I see the love in his heart.
I don’t know where he’ll be in 10 years or even one year in terms of independence. But you know what? In the past year, he’s made incredible progress in dressing himself, brushing his teeth, and taking care of his own needs. I am so proud of him! If he can do all of this now, imagine where he will be next year. And the next!
And who will take care of him when we pass? I can’t think like that right now. I can tell you that the progress I’ve seen in my child over the last few years has been nothing short of amazing. I hope that he will grow to accomplish things beyond our wildest dreams! But who will be around to catch him if he falls if I’m not? I don’t know the answer to that, but I can tell you that he has an amazing support network of people in his life — family, friends, teachers, therapists — and that he is really and truly loved. He has this way of touching people’s lives with his smile and his heart. And I am hopeful these people will continue to be there for him and his network will continue to expand and grow, so he will never be alone.
Leaving the fears of 2016 behind, I am reminded of a quote I read a while back saying, “Hope and fear both require you to believe in something you cannot see. You choose.”
There’s a new year coming. Mason has made progress, and he gives it his all every day. So for you, my boy, in 2017 I’m choosing hope. My hopes are stronger than my fears for you, and my love for you is stronger than anything in this world. I’ll be with you every step of the way!
Images via Contributor.
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