As part of Autism Acceptance and Understanding Month, I was challenged to share what it's like to be a mom to a child with autism.
What I share is intended to keep it real, all the realness that came with motherhood with Autism.
Autism was not our first diagnosis, in 2001, our little girl at 4 months old was diagnosed with Neurofibromatosis (NF Type 1). Long scary word at the time. Having to go to a neurologist on a regular basis, and hearing words like genetic mutation, neurofibromas, tumors, lisch nodules, well let’s just say was scary.
Note to future mothers: googling everything you can from the beginning is not always the smartest thing.
We were learning to accept what was to come, how we would have accommodations for her life, and how we would find the best doctors to manage Neurofibromatosis. She was still developing into a sweet, playful, talkative sweet angel.
Then things started to change, and NF doctors couldn’t understand why.
“This is not typical NF development, Mrs. Sommer”, the neurologist says. We lost the language she had, eating patterns changed, wouldn’t sleep, etc.
Sleep was almost non-existent and I was barely functioning.
Then 2003 came, and rocked our world…...............…Autism.
Before I was scared, but now FEAR started to come.
What is this Autism thing on top of what I just learned about Neurofibromatosis? Do they have to do anything with each other? How will we manage 2 sets of doctors/specialists and professionals? Which one will require more attention? How will we find the time? How will this impact our 2 older kids? CAN WE DO THIS?
After the diagnosis in 2003, and after constant crying and having fear starting to take over almost every moment of the day, I set into “fight and action” mode. Instead, days were spent with a determination of finding how to overcome Autism. Can you overcome it?
Found that “Autism is Treatable”!!!!!!!!!!
I also found TACA, and have never looked back!
I found HOPE in a way that was not written in a parenting manual.
I found a group of moms that were fighters, smart, resilient, yet kind, giving, and tenacious.
I found my TRIBE and my second family.
What did we have to overcome?
We had to find specialists to treat her medical co-morbidities: Immune dysfunction, severe food allergies, sensory dysregulation, mitochondrial dysfunction, GI disturbances, metabolic challenges.
We had to find professionals and therapists who CARE passionately and presume competence.
We had to find my daughter's voice.
We had to find ways in how she learns.
We have had to teach her everything most families take for granted.
We still do every single day.
We have lost a LOT of things, and have felt isolated.
BUT I cannot and do not focus on those things, because on the other end, there is so much more received.
A partnership with my husband that keeps me lifted.
The extended family that’s there for us.
Our older children becoming caring people.
Again, a village of TACA volunteers who I wish I never met but cannot live without.
All of these experiences learned are written into our family story.
We will accept any outcome this leads us to, but we will not do it without fighting for the best life it could be for her.
I don't wish Autism ever for any mother or family, but I do wish for every mother to experience finding her true genuine self and finding meaningful joy. We have.