[This post is the first in a series about looking back on aspects of my journey as a parent of an autistic child and how I feel about it now that my son is 20 years old.]
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One thing you’ll find with most parents of children who have autism is that they always remember D-Day. The day of their child’s diagnosis. The day everything changed.
Some parents are devastated; they grieve for the future they envisioned for their child, for the parenting experience they expected to have. How could this happen to me? To us? This is so wrong!
Some parents are filled with shock and fear – what does this mean? What are they supposed to do? What’s the next step? What does this mean for their child’s future? They feel a sense of dread and despair for the journey ahead of them.
Some are angry. Who does this doctor think she is? She doesn’t know my child. My child shows affection! He laughs! How dare this doctor say he has autism? I know my child better than any professional could.
Some, surprisingly, feel relief. They knew something was different about their child. They knew their child should have been talking by now. They knew he wasn’t just a “late bloomer.” They knew their child wouldn’t be shrieking at any outing in the community unless there was something going on with him.
And, of course, many parents feel a combination of these reactions and emotions. Me? I felt strangely relieved, but also shocked and fearful of the future. In 1997, the year of our D-Day, autism was still considered by some in the medical field to be the death sentence of developmental disabilities. There wasn’t much information out there. No internet, few books. Somehow I found out about ABA and learned that there was a local center that offered ABA-based therapy, without the use of aversives. At that time there were only four children in the program, and my son became one of them.
From the age of 3 to 6 years, he received approximately 25 hours a week of therapy, including two home visits every week. He was taught to communicate using PECS – Picture Exchange Communication System – with cue cards and schedules. He also received speech and occupational therapy. When he responded to the behavior therapy by following instructions and interacting with the therapist, he received a gummy bear or some other type of treat. And after over two years of this intensive therapy, he began stringing together three words of spontaneous speech. He was five and a half, and I had some hope.
Over the course of many years, he progressed more than I had ever dared to dream. I felt certain it was because of the early intervention therapy he had received. I recommended ABA-based therapy to other parents I met. I believed that it saved my son. He wasn’t “cured,” and I never expected that, or even hoped for it. But I had wanted him to be able to interact with us and navigate this world as comfortably as he could.
At some point, probably when I participated in the Partners in Policymaking program in 2014, I became aware of the concept that maybe he would have been okay on his own, without therapy. Maybe he hadn’t needed to lose 25 hours a week of his childhood and been made to feel like there was something wrong with him. Maybe he would have learned to speak on his own timeline, might have naturally developed a way to filter all the sensory input that agonized him. Maybe with time he would have been fine on his own, and he could have just been allowed to be a little kid, unfettered by sitting in a chair across from a therapist five days a week. Maybe he could have had a “normal” childhood.
And I started to feel bad about the therapy I had so exuberantly lauded. I started to think that my son, with all the gummy bears and goldfish crackers he was rewarded with, had been trained like a seal. Or a lab rat. How could I have thought that was how to teach him? How could I have thought that was beneficial for him?
Either way, there’s no way of knowing if it was the therapy or if it was just the passing of time that contributed to his development. And instead of beating myself up over something I will never know, I have come to accept the belief that it was both. It was the therapy and it was the passing of time. But it was also my son’s determination, my belief and hope, our connection, and our love. It was not one thing; it was everything.
[Image courtesy of Keep Calm Studio]
So interesting. Even though I am not an autism parent, I have been dealing with my daughter’s severe development disabilities for nearly twenty years as well, and when I look back on everything that we did for her, all the classes, the therapies, the Floortime, the gyms, the alternative stuff — well, some of it makes me cringe at the sheer waste. I do believe that all that stimulation was, at best, a way to make her brain work and make connections and strive OVER the chaos of seizures. All the same, I don’t think I’ve ever gotten over the feelings of guilt that I haven’t done enough or didn’t do enough.
It’s so interesting how we all have different reactions to things based on our experience.
It hurts mine and my husband’s feelings when people ponder out loud (mostly relatives) if our child would have just “outgrown it” on her own. It feels like a broad sweeping dismissive of the struggle our whole family has endured to get her where she is today, and also of the struggle she still faces on a daily basis, from people who have never quite accepted us since we’ve had to “go out of the box” in every way for her.
You were doing your very best getting him the best services available at the time, under very trying circumstances…with no map and little help. You did good mama. And yes, It was not one thing, it was everything, the most important being your steadfast, determined unwavering, beautiful love.
Well said, Tanya, as always. We were right behind you, with a March 1998 D-day. It does not good to regret, but one can’t help but think what the lives of the siblings would have been like then, or now, had we been more available to them.
Elizabeth, thanks so much for your comment. I agree – there are so many other things I could have done to try to help Neil, various supplements and treatments – I, too, feel that I didn’t do enough. I think it’s the curse of parents in our shoes.
Thank you, Michelle. I’ve been noticing that people have had different reactions to this post. I’m with you on other people interjecting what they think about how Neil’s doing and what his needs are, and how “high-functioning” he is (always angers me; people have no idea of the reality unless they’ve lived it). I think what really upsets me looking back on his ABA-based therapy is the fact that the method of getting him to interact by rewarding him with gummy bears, etc., smacks of animal training, and I’m having a hard time reconciling that. That’s basically this post in a nutshell. And thanks, as always, for your unwavering support. I truly appreciate you.
Thanks, Carrie. Yes, I always think about the siblings too. That’s really the only area I have tremendous regret. But, as you so wisely say, It does no good to regret. I’ll try to remember that. Love.
Dear Tanya, Great article!
I’m a parent of a child with autism too, my youngest of four.
My son is now 16 years old and we had a lot of challenges and we still have.
He is diagnosed with Asperger and P.T.S. Syndrome.
He was always sad that he was different from other people, but now finally since last year he is satisfied with himself being a person with autism, he accept himself.
That brought new chances for him and I was and am so happy about that.
Never regret what you did or didn’t do that’s what I learned.
At that moment you did it with your best intention.
Regret is useless.
I also let me diadnose last year and I have autism too.
Fot me it’a relieve to find out and when I found out about my son when he was 8 years old it was a relieve too but also I was worried about his future.
Thanks for your post and sharing.
I wish you all the best.
regards from the Netherlands,
Marianne
Great article
Loved everyone else’s comments as well
I still get the feelings of “I did not do enough”
This is fascinating! As a parent you do everything you can to give your child the best life possible. That’s what all good parents do. It’s never a waste. It’s a process. A learning process for everyone. All components matter. It’s like sitting in a college class you thought was BS, but it mattered to get that degree. You sound like an awesome mom!
Honestly, I have found that the hardest thing about my child’s autism is dealing with the judgement of others who have not been in my shoes.
[…] They do talk about the struggles, the monumental challenges their children have faced. They talk about their children’s determination to learn to communicate or to filter the sensory input that prevented them from doing things they – the children – wanted to do. They say things like, “He’s come a long way.” And that’s the latest criticism – that they had to “come a long way” to therapy-out their different-ness. (Part of me understands where the nay-sayers are coming from – I really do, and I’ve written about that topic before.) […]