by Debora L. Smith, CLE Parent
For most of my son’s life he’s been misunderstood, bullied, afraid, excluded or summarily dismissed. No wonder I was never far away with a needed explanation, interpretation, apology, you name it.
But on Sunday, August 9, 2015 that job of mine ended. I was replaced in that capacity by much more capable hands at College Living Experience—although, of course, no one is replacing me as my son’s mom. Whew.
To get some perspective on where we’ve been, let’s take a look at a few of my diary entries from last year.
The above was written the day we left him at his new apartment and returned to our big house one person short. I remember just standing in the hallway clinging to my husband, both of us in tears. We didn’t quite know what to make of this change but we knew it left a gaping hole in our hearts.
Don’t get me wrong, we want nothing more than a life of blissful independence for our guy. I just wasn’t prepared for the bitter pain and heartache I’d have to suffer in order for him to be “reborn.” It was as if I was going through childbirth again with the same child, however this time was for his life as an independent young adult. The first time around I was given an epidural. Where were those painkillers this time? Ouch!
I have learned much over the past two decades as the parent of a child with ASD. Some fundamentals:
- Never settle. Never settle for the first diagnosis, the first method of treatment, therapist, etc. and if a chosen intervention or therapy doesn’t produce results or changes in six to eight weeks, go back to the drawing board and try something else. Don’t waste time on a losing approach.
- If you don’t agree with something, say so. No teacher, IEP team member, therapist or doctor can read your mind.
- Always expect more. Keep pushing your child out of his or her comfort zone. Be relentless.
- Make sure you and your child understand the diagnosis—and don’t let it define him.
- Never diagnose someone else’s kid. Never.
- Never say “Oh, he’ll grow out of it.” It’s not an option. That’s not us being pessimistic—just realistic.
- Never say, “OMG, he sure doesn’t look autistic!” What does that even mean?
- Don’t be afraid to ask for help or to surround yourself with those who know.
And when your kid is never invited to parties or get-togethers just because of his way of being, that’s when you have to reach out and find support groups in your community. The last thing you want to do is isolate yourself and your child. When our son was in high school we wanted him to join some groups, but we couldn’t find anything that matched his interests and level. That’s when I started Autism Resource Mom, Inc.—a nonprofit organization that provides support, guidance and hope for families of children with autism spectrum disorder. Through the support we offer parents and caregivers and the activities we sponsor for the individuals, we make sure that our members get all the social opportunities afforded to their typically developing peers.
I’ll never regret how much I pushed my son. I still do it—and don’t think I’ll ever stop. I do regret being so stressed much of the time—I wish I could have been less on edge but I didn’t want to miss any opportunities for him in those early years. Hopefully someday, when he’s enjoying a career in the film industry living with a family of his own he’ll be able to reflect back and tell my grandkids that he was glad that he had a mom who cared enough to be a nag.