I was listening to a podcast* about decluttering the other day. The topic was children’s artwork. The hosts opined that children should get to pick which pieces are kept, but that they should get to fill only one box throughout their childhood, and that’s it. So the kid leads the way in deciding which of the old works of art will end up in the fireplace each winter. The hosts do not believe that any newly minted adult actually feels grateful to their parents when a huge stack of nostalgia boxes is given to them as soon as they rent their first apartment. What is sentimental to us as parents is not valued in the same way by the young artist. Fair enough, I thought, as I sobbed emotionally into my sleeve while peeling carrots.

The discussion led me to think about what we have kept over the years. R is a beautiful illustrator and storyteller, though he is frankly disgusted by how much I adore what he considers sixth grader smarminess, and won’t even look at any of his middle school writings. We don’t have a fireplace, so they end up in the recycling. But sometimes, ah, sometimes, I sneak them back out, and keep them for myself. I read them over again and then chuck them, telling myself sternly to enjoy the young person who is standing in front of me, and not the goofy memories he does not cherish.

There is one topic that he has always excelled in, and that is autism. He once wrote a story about A, and stapled the little pages together. It was full of pride for what A can do, proving that even years ago, R could see that what might get lost was A’s gifts, in the rush to address what are perceived as deficits.

For an art project one year, he drew a side profile of A from a photo. In it, A is beaming, and hamming it up for the camera, and R added a shower of Skittles raining down upon A’s delighted head. I remember when R was working on it. He was so sleepy that night, but there was so much homework. I sat with him at the dining table so he didn’t have to be alone, and we watched a documentary about Usain Bolt on Netflix, so his mind could have something else to think about while he drew Skittle after Skittle. It turned out absolutely beautifully, and we had it framed. It has pride of place in our dining room. R looks at it and sees only flaws in his skill, but we see a portrait of love. Our two best people are symbolically connected through that picture.

Which brings me to A’s school artwork. This is a messy arena for me as a mother. A does not enjoy writing or drawing, and it just doesn’t seem to be how he learns. But school always sends home his chicken scratchings, and I set up a poster board in the living room, to which I pin the latest offerings. And I keep the ones which he obviously did on his own. Oh gosh, who doesn’t love the handprints? I want him to know by default what it is to have a mom who is embarrassingly proud just because he exists and is a person and does stuff.

He too has a box. Will he ever value the keepsakes? I have no way of knowing, but I have a guilty spot in my foolish heart that won’t allow me to skip this part of mothering him. Some day, he might love his memories, is what I tell myself. A’s big dive into the past is always through Google photos, but his box of artwork will not stop getting filled as long as he participates in crafty activities. I also regularly use a laminated bookmark that he made for me one Mother’s Day. But never for library books, because if I forgot it between the pages and lost it, I would grieve beyond rationality over it.

Although, with time, our children transform in front of us, we are linked inextricably to our severely autistic sweethearts. It is just the nature of being a family with them. It is a complicated and messy bond, one in which we are always negotiating freedoms, vulnerabilities, consent, and physical and psychic space.

Recently, a very well known and beloved autistic boy and his mother perished in a house fire in California. Muhammed, and his mother, Feda, will never be forgotten by people in the community of families of severe autism. Feda Almaliti was prominent in the founding and running of the National Council on Severe Autism, and also had a podcast called The Scoop.

My contact with Feda was brief, and through NCSA. She was on the webinars I attended, and promptly answered any emails I sent to the organization. But her personality and warmth were unforgettable, leaving an impression on me even from afar.

I cannot imagine that I am alone in being haunted by their deaths. According to the NCSA write up, Feda was unable to get Muhammed out of the house, and they died together. I’ve thought often about how impossible it is to get A to break from routine; or to abandon plans abruptly when there is an emergency; or especially to conceive of how to act quickly when the idea of home as a safe space is violated. How one of us would probably do what Feda did, because leaving him alone would not even be an option.

The one thing that Feda and the other wonderful people who run NCSA have given us is a space to talk honestly about how we are all impacted by severe autism. Otherwise, in the world of autism advocacy, parents like us are aware of how we risk making it about us, and applying ableist frameworks onto our children, adversely affecting their futures even while we worry about them.

NCSA webinars and writings draw us out. We can talk about how to handle aggression, self harm, property destruction, endless bodily waste, remote learning, loneliness (our kids’ and ours), and struggling to cope through the pandemic. How do you pay for the home damage if you’ve lost your job because your kid needs so much vigilant attention that you couldn’t show up in the ways your employer continued to demand even though you were working from home. How do you give your other children a semblance of parental engagement while attending to so much autism stuff. How do you decide whether to medicate. How do you hold onto hope when you never sleep a full night, your precious little communal life has slipped away, and your friends are sharing pictures of beach days. Most of these issues would not be quite so hard on us if we didn’t live in such an ableist world, but that’s a whole other discussion, isn’t it?

This is why we need people like Feda. We can hold one another in the community that is so elusive for us. The things we share with one another are safe. And we know this about one another: any one of us would have done what Feda did. It is not a grandiose statement. Quite the contrary. When you have spent all the years of your child’s life trying to be whatever they needed, you are not going to abandon them in their last fearful moments. If you left them behind and ran to safety, what kind of future would lie ahead? Nothing but self recrimination. Deeply flawed parents we may be, but we know this much about ourselves.

So. This is why an ableist world is so harmful. It presents us with such stark options Every. Single. Day. Maybe not Death as preferable to Tortured Future, but certainly Isolation vs Ableist Community Life. If you think that’s overly dramatic, ask yourself why. There’s also Glossing Over Realities of Severe Autism vs Subjecting Ourselves to Harsh Scrutiny, which is sort of the same thing, but there are always nuances in how people engage with us.

I believe we rehearse for each severe autism scenario with a combo of mental what-ifs and also deeply experiencing on a regular basis our children’s coping skills and expressive clues. We know in our hearts that some day, somehow, there may be no more paths open to us, and we will have to act decisively.

While I honor and cherish the sacrifice that Feda made, I do not believe that we should fail to think about why the worst case scenario led to this outcome. Why do we just know that parents like Feda would give everything, and society can have its heroes. Why do you know this about us, and why does it render you able to keep on living as you do?

Does it feel only right to you that she and Muhammed died together in that burning house? It feels starkly inevitable to me. And that’s because we don’t understand how to be alive in a world that conceives of no other path for us. Sees no higher destiny for us. Draws a Lakshman Rekha and keeps us inside a house and a reality that might one day consume us.

I know that our community is celebrating Feda and Muhammed for their incandescent lives**, and not just for the heroism she was forced into in their fiery deaths. They are worth so much more than the “outcome.”

If you are wondering what is the connection to preserving artwork, it is this: everything that our children are is worth saving.

Radha.

Sources:

*https://open.spotify.com/episode/1daKIzfqGw3aBDZihXExli?si=TRH0EnubTsawJxwmShSXZw (apologies for not doing an MLA citation on this! I will come back and edit).

**https://www.ncsautism.org/blog//on-the-passing-of-feda-almaliti-1977-2020