Don’t you sometimes wish you had the crystal ball, an assurance that the future will be OK?
I know I sure did. When my son Alex was diagnosed with autism at age 2, I wanted to know that when he was an adult, everything would be OK. I thought I’d be able to get through whatever was necessary if I could peek at the ending.
But the truth is, I was better off not knowing. I could not have appreciated the outcome if I hadn’t been on the journey.
Alex is an adult now, and I think his life is pretty awesome. But to put it bluntly, it’s not the kind of awesome I would have imagined when he was 2 or 4 or 6. He hasn’t yet found fluent language, and he didn’t go to college, and he doesn’t live on his own. He is on the autism spectrum, and that comes with challenges that can make his life hard. He requires around-the-clock supervision. He has complex communication needs.
Alex has a part time job, friends, family, and lives away from his family home. It seems everywhere he goes in our community, he runs into people he knows. I measure success as doing your best, overcoming obstacles, having strength of character, and building your own life. Alex is successful.
I’ve read articles from so many parents dreading to say they put their child in a group home. I look at it differently. I want my child to fulfill his potential and become as independent as possible. His neurotypical sister moved out, so why shouldn’t he?
Alex’s path to independence isn’t the same as his sister’s, and may not be the same as many of his peers, but it is a path nonetheless.
We worked really hard to find a good fit for Alex when it was time to move out. It took a lot of time and effort. He lives with three other roommates, all young men with different needs. They have around-the-clock staff. They eat meals together, do chores to take care of their home, and are involved in their community. They all have part-time jobs. They act like brothers and have created their own family. Alex has become more independent and had experiences he might not have had if he stayed home with us.
He has created bonds and relationships that he might not have had. Alex transitions smoothly between Mom and Dad’s house and his own house. We visit frequently, and he has overnight visits regularly. We thought going back and forth would be hard for him, but he does really well.
He had, and our whole family had, an additional support system when he was diagnosed with cancer 20 months ago. They helped us all through so much of the cancer treatment, and helped Alex retain as much normalcy in his life as possible. He is currently in remission, but it’s been a really long haul, and he’s not out of the woods yet. His caregivers and his group home were not only emotional and psychological support, they were practical and physical support in caring for him throughout his illness.
When Alex was 2, I didn’t know a family like ours. I didn’t know someone like Alex. If I had, I might have been less scared. I’m here to tell you that this outcome is OK — actually, it’s much more than OK. It may not look like the life I imagined when he was 2, but he has a rich life. And I’m really thankful I didn’t have that crystal ball.
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