The day starts with ease. Laughter even. The sweetest souls fill the room with toys and doughnuts in hand. Everything is perfection until it isn't. Something sets a tiny human off and the rage of a lion takes over.
"Bubble breathing", soothing words and time out sequences are implemented and the crisis is averted. For now. Sometimes for a moment. Sometimes for hours. It just depends on the day.
An invisible disability. The ability to blend in until they stand out.
Then, they really stand out. A disability that is so prevalent...in fact 2.5x more common than autism, but no one seems to know about it or understand.
The next episode comes while in public and deescalation isn't as easy. Breathing through it fails. Soothing doesn't cut it either. Everyone is staring. No one understands that their brain is shorting out. The kids don't understand the consequences they have been given. Their short term memory loss is hindering their ability to function.
They are in Fight, Flight or Freeze.
Flushed, the sweat beading on my forehead and my heart beating fast. How do I keep this child of mine safe and the glaring eyes from burning through me? The shopping cart is abandoned. Siblings rushed out the door. Another trip that goes incomplete. A day that is counted a loss.
I reach out for help but seem lost in the bureaucracy of a broken system. The hunt for doctors and therapists becomes challenging. It seems like I know more about the disability than everyone else in the offices. Specialists tell me that I need to do my research and then educate everyone around me. Everyone who comes in contact with my kids. They say doctors only have about a paragraph about the kids disability in all of their schooling. The disability holds a stigma. A stigma for those affected. One for their birth mom. One that is now this mama's job to fight.
So, I does just that, I fight. Fight the stigma. Fight the system. Fight for research and answers. I fight for services. Ones that will help my children to grow and be all that I know is possible.
I fight for them.
Around me, there are so many other mamas fighting for their kids. Beside my children there are so many others, struggling for a place to fit in. A place to be understood. A place that they will thrive.
I hope my kids find them. That they find others like them, who are determined to be their best selves. That they find the other people who stood behind their loved ones advocating. The people out there who see them for who they are and not how they have been defined by a world that doesn't understand.
In the meantime, while my tiny fighters seek out those who will understand, this mama bear will be fighting to make more of them. To form a community where people understand or at least want to. A place in this world where my kids and others like them will be safe.
Interested in learning more about FASD (Fetal Alcohol Spectrum Disorder), visit NOFAS.
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