I feel guilty about a very strange thing.
Not about something I’ve done, but about something I was given. Today, I want to hold my hand up and shield people from paying attention to this part of my life; here, in this particular community of parents who struggle daily with special needs, and never-ending vigilance. A few codes in our neurologist’s office indicate I’ve every right to be among you – encouraging others, being encouraged.
But today, I feel like a fraud.
You see, my two boys on the autism spectrum don’t seem quite “disabled” enough.
Sometimes, it’s not that bad.
I find the other families on this site astounding. I am amazed by their strength, and their perseverance in the face of difficulty. They deal with cerebral palsy, and Down Syndrome; PTSD, and severe autism. Their struggles take the kind of daily work I’ve never had to invest.
God has chosen me for something else. Something . . . easier.
Jesse, 7, and Noah, 11 are both “high-functioning” as autism goes.
Jesse was a PDD-NOS diagnosis and Noah was an Asperger’s diagnosis before the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) changed both their diagnoses to “Autism Spectrum Disorder” (ASD). They both also have a combination of OCD, Oppositional Defiant Disorder, ADHD, and DMDD (Disruptive Mood Dysregulation Disorder). It ain’t easy, to be sure. But it’s not unbearable, either. Not now, anyway. Maybe one day, it will be.
My friend in California has a boy a little younger than Jesse who also has an autism diagnosis. This exact struggle came up recently in conversation. What happens when we’re caught in that gap between “neuro-typical” and “severely disabled?” Do we apologize for our family’s diagnosis in the company of those more intensely impacted? Explain that there’s a lot of work that goes into making the disability “invisible?” Thank the Lord that it’s not harder for us than it is? How do we rightly live in a community of people impacted to such varying degrees?
Is our ability to minister to other special needs families a hoax?
I feel as though the American Psychiatric Association (APA) did a disservice to the children with more severe autism than my boys. Noah and Jesse are lumped together with kids who are non-verbal, who lack many basic skills. They have a “harder” form of autism than my boys, and yet, they all fall under the same diagnostic umbrella. For the convenience of the APA, perhaps. Or maybe something else.
Today, we’ll go to the boys’ school to tweak their Individualized Education Plans (IEP). Last week, I coaxed Noah out of a meltdown as he screamed and hit things, saying he was sick of autism and he hated himself for having it. Last night, Noah came to us in the dark, fully dressed, having fed the dogs and packed his school bag, asking if he could watch t.v. because sleep was evading him, and he has no concept of time. At 3:45 a.m., he didn’t realize we weren’t anywhere close to leaving for school. Noah cannot tie his shoes. Jesse cannot maintain relationships with his peers, tending toward aggression and bringing word home of a new fight every school day. Noah stiffens when over-stimulated; Jesse spins. There are certain foods and textures they cannot abide. Personal space is a foreign concept. And that, with the exception of nuances in mood and executive functioning, is largely where our autism ends.
So you see, my level of difficulty is not like yours. It’s a challenge, certainly. But they are potty-trained, and verbal. They require no special equipment. They dress and feed themselves. They are in mainstreamed education at school (accompanied by tools to help them succeed).
So for all this, I feel somehow compelled to apologize to you. I’m sorry that on the sliding scale of “disability” my boys’ diagnoses fall on the more manageable end. I’m sorry the DSM-5 lumped children together of every shade on the autism spectrum. I’m sorry for what must seem to you like the herculean task of managing your every days.
Today, I wish I could trade my day for yours. I wish I could lift your burden – one that I’m sure you must sometimes be tired of carrying.
I also want to tell you how very much I admire you. I am awe-struck at your dedication to your children and the sheer willpower required to keep them moving in the right direction. I’m amazed that you fight to be the best parent you can be, despite the circumstances you’ve been dealt. I know that it’s taken years to learn what works and what doesn’t with your child, and that you’ve never forgotten you were hand-chosen for this task. I’m astonished at the countless sacrifices you’ve made, the ones that the rest of the world knows nothing about. I see them. I have watched you, prayed for you. I commend you. You inspire me.
And for whatever right I have to be here writing and reading alongside you on this special needs journey, I want you to know something.
You’re my hero.
Sarah Parshall Perry
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