Many years ago, we wrote about Kent State University Professor Trudy Steuernagle, who was beaten to death by her son, Sky Walker. She knew that one day, his severe autism would kill her. She did not blame him. She left a letter behind saying as much. Kent State professor Trudy Steuernagel's fierce protection of her autistic son, Sky Walker, costs her life: Sheltering Sky.
Last month, the autism community lost Feda Almaliti and her beloved son Mu in a fire. Mu did not beat his mother to death. He refused to leave their burning home. She chose to remain with him, even to their deaths.
Autism, like so many other critical issues this abysmal election season, has been cast aside for COVID . Already tough times for families are far worse with closures, lack of proper school, no day programming, services and care staff unavailable and above it all - a radical change in routine which is toxic for our loved ones.
We parents whose children remain at home are really feeling the pinch of COVID's social isolation. There are countless families facing violent behavior, 24/7 caregiver exhaustion, financial trauma. I feel fortunate to have day programming opened my older daughters. That said, I have at least one of my daughters home with me at all times. This means every trip to a store requires bringing her with me. I've cancelled appointments. There is no downtime until bedtime. That sound you hear at 9:15pm is probably me breathing a sigh of relief! And I'm lucky all three of my daughters sleep. Many families do not have the luxury. Work is pecked out while surrounded by noise, music, stimming, hands grabbing me to do this or that, demands. I have been telling friends this is like going back to the toddler years - with a few precious hours of preschool (day program) a week and a little one always in tow. I'm not complaining (much) - many have a far tougher situation and we have a darn good routine here. I'm proud of my daughters.
Trudy and Feda's trauma is seared into my heart and soul. Below is a post from David Royko that rings true. A call to action. A call to KEEP GOING because autism should not be fatal - to any of us.
Juggling Autism Blog: Feda Almaliti and Mu, A Severe Autism Nightmare
Father to Ben and Jake; Husband to Karen; Psychologist (so you can call me doctor if you want to though I probably won’t realize you mean me); Director of Chicago court system’s divorce mediation services; Writer/Author — mainly autism, music, children of divorce, Mom and Dad (Carol and Mike Royko); Blogger (Juggling Autism; Huffington Post); Resident of Deerfield, Illinois, and Beachwood, Ohio; Former: Drummer, Circulation Truck Helper, Radio Host, Workshop Leader, Uber driver, WFMT Production Assistant; Group Therapist; Freight Train hopper.
“Autism was becoming a fatal condition for me.”
Karen said that a dozen years ago when Ben and we were the subjects of an episode of the radio show, This American Life. It was about Ben moving out of the house into a residential placement. And she wasn’t speaking figuratively.
Severe autism is a living hell for the afflicted and those who love them. Karen had suffered a dozen years of severe sleep deprivation. Dangerous incidents were becoming more frequent with her ability to control a hulking, six-foot 12 year old decreasing by the day.
Last week, it became a fatal condition for Feda Almaliti. She was a larger-than-life, 43 year old powerhouse in the autism world, with a son suffering from severe autism. A true “Warrior Mom,” her accomplishments included co-founding the National Council on Severe Autism, and helping to reform California’s insurance laws to cover autism. In the world of autism, her brains, her sense of humor, and her personality were making her a living legend. And autism ended her life, and that of her beloved son, Mu (Muhammed).
The news reports all blame the fire for their deaths. No. It was severe autism that killed them....
Read more at Juggling Autism: The Chronicles of Ben Royko Severe Autism in Real Time
In the middle of the night, Feda’s sister Salah was awakened by her daughter screaming that she couldn’t breathe. Their house was ablaze.
After they had gotten out, Feda realized Mu was still inside and ran back in. As Salah screamed for them, she heard her sister trying to get Mu out.
In a devastating Facebook post, Salah describes hearing “…the popping of glass and the faint noises of Mu crying, ‘No,No,No’ in response to Feda pleading with him,” using his nickname, Hammoudeh. Too big for Feda to carry, she yelled that they needed to “get out now!”
When the fire officials found their bodies, Feda was holding Mu.
Autism had become a fatal condition for them.