“Lessons from Public Television”

A fellow autism mom and I were texting this morning about various academic/extra curricular activity related stumbling blocks. We concluded something I have been thinking for a while—that ultimately, everything defaults to us.

When you have kids termed “low functioning,” it really does. On paper, our kids are entitled to many services. In reality, they trip themselves up with their challenging behaviors, and are very often sent home repeatedly, kicked out, or not accepted at all. This is after we have filled out reams of paperwork for each application.

We sometimes go weeks with only marginal productivity in other spheres of our lives. Our kids lose the few social skills they have mastered with such difficulty when they cannot attend programs consistently. Retaining babysitters is a crap shoot. If it is flu or allergy season, even dedicated home therapists drop like flies and must take many days off. Doing anything but run on the autism wheel becomes ridiculous for us even to contemplate.

You know who never gets to cancel? Us. You know what the great state, federal, moral and spiritual plan is? Us. We are the plan. And you know who stumbles through lives of quiet desperation, upholding all this mega tonnage of dharma? Yeah.

There IS no backup plan. For those of us who don’t have so-called “high functioning” kids, we are it. My friend and I don’t have a family network to tap into either, so I don’t know about her, but I sort of listen to people who do have that with half my brain, and with the other half, I think of Mr Snuffleupagus. Lest you imagine otherwise, let me be clear—we are the Snuffleupagus, just as much as others are. Other people are not real to me, just as our situation is not fathomable to a larger society that rarely perceives us.

To some extent, this is better than being in the general orbit. At least we don’t have to listen to sermons about vaccines and gluten, or endure comparisons with other autism families we are probably too exhausted to bond meaningfully with. Plus we may prefer not to fake that everything is fine just to avoid being schooled. Wearing that fake mask is boring, and bad for us.

I cannot help laughing while I write this piece. It is so incredibly wonderful to say it without having to qualify anything. Sometimes I cannot wait for everyone to leave the house so I can breathe in some silence. There might be a phone call in five minutes asking us to come pick A up, but at least I would have had five minutes.

Sesame Street finally did a big reveal of Snuffleupagus, and after that, everyone was able to see him. It became problematic, you see, to send a message to kids that they might not be believed when they talked about someone who interacted regularly and secretively with them.

If a tv show could make that leap, why not reality? What is keeping families dealing with severe autism invisible? Why is it so easy for you to be hypothetically in our lives but not really? Why do other kids, even the aggressive, cliquish, or sly ones, get to show up repeatedly in public spaces, but permission to enter the same spaces has to be renegotiated every time for ours?

A’s school had a talk about transitioning to adulthood, and the prep needed from our end. The speaker actually managed a straight face while he said that day programs are more likely to accept our kids if they don’t need such a high level of one on one care, ie. if they can control impulse behaviors and disruptive tics and meltdowns; if they can generally occupy themselves contentedly; and if they don’t need help with toileting. Oh, I said inwardly, managing not to groan out loud, you mean they have a higher acceptance rate if they are LESS AUTISTIC. If public school cannot adequately accommodate severe autism, and neither can special ed schools or camps, and if adult services also cannot, guess what we are back to. A+ for you if you chanted “You are the plan.”

There are no excuses that can justify the way people like us have to slither in the cracks and margins. I don’t want to be Snuffleupagus anymore.

Radha.