'He's Incredibly Confused': Parenting A Child With Autism During The Pandemic
May 22, 2020
Heard on All Things Considered
by Courtney Dorning and Mary Louise Kelly
Here are some excerpts from the interview:
"'Muhammed is an energetic, loving boy who doesn't understand what's going on right now. He doesn't understand why he can't go to school. And school is one of his favorite places to go. He doesn't understand why he can't go take a walk in the mall when that was one his favorite things to do. He doesn't know why he can't go to the park, why he can't go down to the grocery store,' Almaliti says. 'So he's incredibly confused, in this time when we're all confused, but he really doesn't understand it.'"
..."It's the unknowing. ... We don't know when it's going to end. We don't know what's going on, and to deal with autism at home makes it even harder. The only support that I get to get through it is through fellow autism parents. We have Zoom calls, and we try to find humor in this thing. ... We're just trying to lean on each other to get through. Because I can't do it alone. Nobody can."...
"...I almost feel like nobody hears us. Because my son doesn't really talk. He doesn't talk. And I'm supposed to be his voice. And no one's listening to what's going on for our families. You know, no one gets that we are just as vulnerable as coronavirus people. The coronavirus is going to come and go. Autism is here to stay." ...
..."We desperately need extra help to get through this. And I firmly believe that autism support workers, aides, their teachers and caregivers are as essential as nurses and doctors and should be given the same accommodations. People don't understand that for our families, caregivers are our first responders. Special needs schools are our hospitals. Our teachers are our ventilators. And we can't do this without them."
More articles by Feda Almaliti:
Three Strikes... and He's Out?
May 23, 2020 [Reprinted from a 2018 blogpost at Autism Society San Francisco Bay Area]
What happens when the regular world has had enough of my son's autism
..."Inclusion is a hot topic in disability circles, but when our kids can’t play by society’s rules, inclusion can truly suck. Instead of some fantasy of joyful acceptance, we get black-listed. Over and over and over. How I dream of places, spaces and programs fully accepting of our special children. Autism-friendly rules, not 'If you act autistic you’re out' rules."
"...At Autism Society San Francisco Bay Area’s Summer Pool Parties we make sure an autistic kid can be him or herself. Where they can chew on pool noodles, bellow and flop around, and no one judges them. So here we are, me in the burkini and Mu in his element. A place, however small, where everyone with autism belongs... on the VIP List. If only the rest of the world were so accommodating."
Inclusion Sucks. Or, Why My Son with Severe Autism Has Nowhere to Swim this Summer
May 22, 2020
"An autism mom stuck at home with her son on a hot summer day meditates on the smallness of his world when inclusion is the only option. ...Of course my pool predicament is a microcosm of a bigger problem: disability-friendly day programs, jobs, housing, and therapeutic care—vital lifelines for parts of our population—are at risk given the direction of federal policy. The trendy mantra is 'community integration' while options for the severely disabled slowly disappear into the black hole of red tape and de-funding."...
..."They say, 'Why maintain an autism day program when Joe could just go to the local Y?' or 'Why have sheltered workshops when Sam can get a competitive job at Safeway?' Please tell me, what are these people smoking and in which smoking lounge can I find them? Have they ever tried caregiving for someone like my son?
"So let's make a deal. Let's ensure inclusion and integration for all those who want it. And let's support acceptance of all, including acceptance of alternative options for the Muhammeds of our world. Don't let narrow ideology throw our babies out with the bath, or, er, pool water. It's just common sense. In the meantime if you'll invite us over for a swim, we'd appreciate it."
No comments:
Post a Comment