#AutismAction: You Can't Do This Alone, by Feda Almaliti
By Feda Almaliti
(The following is an except from a talk the late Feda Almaliti gave at an Autism Society San Francisco Bay Area conference held at Stanford University in 2017. Feda passed away in September 2020 in a house fire as she tried to save her severely autistic son Muhammed.)
Anger has a vulnerable underbelly.
Deep sadness. It’s easy to look at a child with autism and feel empathy for their plight. What gets missed is so much of the time is the experience of the parents. For me, this sadness has taken two forms. First I have had to grieve the loss of the child that I thought I was supposed to have. The sadness that wells up when I realize he will be watching Dora the Explorer for the rest of his life; that he will wake me up at 5am and get into my bed for the rest of my life — and I don’t even want to think about what happens to him after I’m gone.
Then there’s that feeling of powerlessness, those moments early on where I sat on the couch watching Muhammed rock with a vacant stare, not turning his head when I called his name over and over…. Help was out of reach, behind some door. This I don’t want any other parent to have to experience because THIS is an avoidable pain.
The purpose of my anger was obvious to me, but for the longest time I couldn’t figure out the purpose of my sadness. And then it became clear. Sadness is glue — it bonds us together. When I look at another mom and sense her pain, I can’t turn my back, I can’t just walk away. I HAVE to stay. I have to listen. I have to be with her. And when she feels she can’t go on, I have to light the spark in her and keep her fighting, and keep myself fighting too.
There is no way I could have done any of this alone. Every single step of the way I had the support of my fellow autism parents. They cried with me, they laughed with me. I’ve even had one break into my house to check on me when I didn’t pick up the phone for a week.
You see, being together in the sadness of Autism is doable. Being alone in the sadness of Autism is not. Being together in battle is doable. Being alone in battle is not.
There’s the saying that if Muhammed cannot go to the mountain then the mountain must come to Muhammed. Well in essence that true for ALL of our children.
Everybody has a role in this movement.
The mountain is big and it’s hard to move.
YOU ARE NOT ALONE.
Feda Almaliti was the founding Vice President of NCSA. Learn more about Feda here.
