This morning, I was sitting in the front office of my son’s school, with my son, who had insisted that he must go to school today. I didn’t want him to. But there we were.
On top of “just” the autism, my kid also has PANDAS or PANS or whatever acronym we’ve invented of late. That’s a long story for another day. A super-clipped version is that my son goes through pathogenically-triggered dark periods.
I call it the Demon. I shouldn’t, but I do. Just being honest.
And the Demon has taken the controls the last few days.
I was trying to keep my son home from school for a few days. It’s not to keep him locked away from sight, but more to mitigate the damage to the people I HOPE will still be there to help him when the Demon leaves. Sometimes you see things when the Demon is around that you can’t unsee.
Sitting in the office, then, my kid was starting to scream and cry. As if I was forcing him to come. In reality, he had begged. He had gotten himself ready to go. He was probably going to walk himself to school when I wasn’t paying attention if I didn’t let him go.
I looked at the teacher and I said, “It is not my choice to bring him here today.” For some reason, it was important to me that they knew I wasn’t treating this facility as a right or an entitlement. That I don’t ask other people to care for him where I’m not willing to.
Also, I don’t know that I trust people to have compassion and love him like I do. Because sometimes I have to dig to find the compassion and forgiveness required myself with some of this garbage. I have to. It’s not like I have a choice.
I am not a great special needs parent. I do not say that to be self-deprecating. In fact, while it may be true, I don’t actually SAY it much, because people think you’re fishing for compliments. I’m not. And yes, my kids are lucky that we try our best for them. But no, I am not great at this special needs stuff.
Ugly truth is, so very few are good at it. But none of us have a choice.
When my kid was six years old, he was still not potty-trained. (Oh, yeah, someone once told me on the trials of potty-training, “Don’t worry, they don’t go to kindergarten not being able to use the toilet!” If I were keeping a ledger of lies I believed, that would be on it.)
During the particularly trying time of trying to get an autistic child to use the toilet, I started to hear the ol’ “God only gives special kids to special parents” thing.
Sounded nice. I must have some special qualities, since God granted me TWO of these kids.
But if potty training a special needs kid will teach you anything, it’s that you are not special. Like at all. And people who perpetuate that lie are just trying to make themselves feel better that they either A) don’t have to do it themselves, or B) feel bad they can’t do more to help. So here, have a nice, comforting platitude while you’re crying in your closet.
Now, first of all, I prefer not to consider damage inflicted on children as an act of God to begin with. It’s more likely an act of men because they forget God. But that’s also a longer musing for another day.
But second of all, since I now know quite a few special needs parents and families, I can say that disability is not selective to those who can handle it. Disability shatters some families. It strains others to a breaking point that would probably boggle your mind. Neurological damage in children happens to wealthy parents. Poor parents. Single parents. Married parents. Highly-educated parents. Illiterate parents. Happy parents. Depressed parents. Competent parents. Absentee parents. Narcissistic parents. Selfless parents.
Every. Single. Kind.
It’s not genetic, even though billions of dollars have gone into trying to prove that it is. So no, it’s not (wholly) in your genes.
Something is happening to the kids, and eventually it will spare no family.
So much of the world surrounding neurological disability is based on lies – the well-meaning kind, the desperate kind, and the malevolent kind.
The “God gives special kids to special parents” is one of the well-meaning ones. Autism is a gift is another well-meaning lie.
Vaccines don’t cause autism. That’s both a desperate lie and a malevolent one.
Or how about, “they’ve always been there” and we’re just “seeing” them more? Malevolent.
Oh, and a very interesting one – and I’m not making this up - autism represents an evolution in the human brain, and us as a species. (I have a place in my house that I escape to hide when my child is literally hunting me. Call me when I’m in there, and I’ll tell you what kind of lie I think that one is. Plus some other choice words I don’t typically say.)
OK, this got darker than I meant it to be. So I’m going to end it with the lie I despise maybe above all.
“This _____ protein bar is so good! It’s like a candy bar!” They’re wrong. That’s always a lie. All three types of lie.
Marianne,
I’m sorry to read this. You are an excellent writer and through your story I can feel your pain. Covid has been terrible for all of us, but it has brought some good. As a healthcare provider I used to believe some of those lies. I no longer do and I’m speaking with others. So many have believed the infallibility if agencies such as the cdc and fda, now we know.