As a special needs mom, I know what it’s like for my child to feel left out. Even when we are invited to birthday parties, we often find ourselves declining.
That might seem a bit self-deprecating, but so many fears come with those invitations. What if my daughter Austen has a meltdown? What if she has a seizure? I don’t want to simultaneously embarrass Austen and our hosts.
A few years ago, we found ourselves invited to a different kind of birthday party, by one of Austen’s “Dravet siblings.” Although Austen had a seizure during the party, the experience was so profound that I’m not exaggerating in saying it changed my life forever.
Imagine a party where every parent has a special needs child. Not everyone had Dravet syndrome, but most had some kind of seizure disorder. Many had autism, and my child wasn’t even the sickest partygoer there.
Austen was able to play — really play — with the other kids. My older two children were able to chat with other siblings who were going through the same things they were. When Austen’s seizure hit, no one stared or asked if they needed to call 911, but everyone jumped into action.
One parent ran ahead of me to lay down coats for a soft spot on the floor. Another was at our stroller grabbing Austen’s oxygen tank and asking what setting she used. A third told me she had our emergency rescue medication bag, and that I should let her know if we needed it.
No one crowded us, yet everyone supported us. By the end of the seizure, I was crying — not from embarrassment or fear, but because I had never felt more included in my life. These parents got me. They understood me in a way that only other special needs parents can. The fear in their eyes wasn’t due to the unknown, but because they knew what I was going through and felt it as well.
Being a parent of a child with a disease like Dravet syndrome can be very isolating. Even when you are surrounded by other people, you still feel alone in your worries and stress. But it’s different when you are around “your people,” even if it’s just one person who knows what you’re going through.
It gives you a sense of community and reminds you that you’re not alone. And in a world where sometimes that’s all you feel, it can be a life-changing realization.
Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Dravet syndrome.
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