Friday, March 21, 2014

It's Not Your Fault

Two-year-old Ethan and his favorite puzzle, 2010

Someone asked me again the other day. Someone asked me, when hearing Ethan may be discharged from special education next year, what I attributed to his doing so well, to being one of those types who people don't immediately realize as being on the autism spectrum.

I used to have a set answer for this. I used to toe the party line, attributing all of Ethan's strides to his early diagnosis and early intervention with therapies. I used to answer that way, until one day someone asked how I knew that Ethan wouldn't have made the progress he's made without all of the interventions, and it gave me pause. How DID I know?

How did I know for sure, when there are many, many parents who have their child in therapy by age two, who spend their lives in speech therapists and occupational therapists offices before preschool ever begins, who have their children receiving ABA therapy for up to 40 hours a week, and who see no.significant.progress?

How did I know, really?

This is not a slam on therapy. I do believe Ethan's therapy was tremendously beneficial, not just to him but to all of our family. It gave us many tools. It helped us understand him, relate to him, and help him better relate to others. But was there something about his therapies, and the fact that they started just before he turned two years old, that flipped some kind of switch or did some kind of rewiring that has made my son -- I don't know how to say this -- I guess, "less autistic?"

I don't think I can definitively say that.

This is the problem I have: it's the load we are putting on parent's backs. It's the fallacy that with autism, A + B will always equal C. It's the fear and the illusion of control (if you just do this therapy, that treatment, this medication, that diet, then you'll unlock the autism). If you just throw them every therapy under the sun before that critical window of brain development up to age 5 or 7 closes, then everything will be okay.

And what are parents left with, these parents who spent years turning their lives upside down to run their child around and overhaul the family's diet and spent money they may not have had on techniques not covered by insurance? Many are left with just echoes in their minds: I should have...if only I'd...what if I'd tried...

This breaks my heart. It breaks my heart to think of parents who would do anything to help their child make progress begin to blame themselves.

Like all of us, I WISH I knew. I wish I knew how to make things better. I wish I knew what caused autism. Anyone who tells you the answers are simple is, to put it plainly, deluded.

Some forms of autism can be hard, really hard, to live with. I say this knowing there are people out there, some with autism themselves, who swing the pendulum the other way and say we shouldn't even be talking about curing autism anyway, that acceptance is the real answer. That's true to some extent. Of course we accept what is; we love. But for those who watch their loved one struggle to communicate basic needs; or injure themselves; or remain almost completely dependent on others; or who live paralyzed by sensory issues or structure or the world they've had to build around themselves to cope -- of course you want more for them.

It's just in the process, you can't blame yourself. Even when that seems easiest...because at least if blame can be attributed somewhere, all of this makes a little more sense.

I can't take all the credit. I am not the "person who did it right" whom others should emulate. I'm just another mom, doing my best, asking God for help, sometimes striking out, and feeling grateful for the progress we've seen.

You know, my one theory about Ethan is that much of what he's been able to accomplish comes down to his smarts. The one thing that's always been said about him, from his earliest days of therapy, is how smart he is. Every single therapist and teacher has commented on his intelligence; how he learns so quickly. He's learned not how to become "unautistic" but just how to cope and adapt in a typical world. Most of the time.

I had nothing to do with that (maybe Dan did; he's the way smart parent). But neither of us DID anything. I know it's easier to write this as someone who has seen a lot of positives, but still I beg of other parents, including my own: Don't latch onto the lie. You are trying. You are loving. You are struggling. But you are not to blame.

1 comment:

Jenny Coe said...

Love your post here. I was just wondering for you as a parent if it's a little scary to have him dismissed from special education? Does that mean he will have no support at all?