Being a special needs parent is the hardest job I’ve ever had. I constantly feel like I am not doing enough to help my child. I not only feel guilty every time something goes wrong, I also feel guilty when things go right.
A few months ago, while using an online forum, I felt guilty that Austen was doing so well. Can you imagine that? I felt guilty that my child had gone a record number of days without a seizure. I felt guilty that she was making cognitive gains, was potty trained, and was at the same level as her preschool classmates.
Why did I feel guilty? Because many parents with Dravet syndrome kids don’t get to say those things.
When Austen first got her diagnosis, her neurologist made a big point of telling us that Dravet syndrome is not just a disease, it’s also a spectrum. Some children are higher performing and can keep up with their classmates for most of their school career. At the other end of the spectrum, children are nonverbal, can’t walk, and have to be fully taken care of by their parents. Austen falls somewhere in between.
Austen has autism as a secondary diagnosis, but she’s very social, is learning to read, knows all her shapes and colors, and can count to 25. Basically, she is kindergarten-ready. She’s a little socially awkward and doesn’t realize people have bubbles, but we are working on it.
The friend I was talking to has a child on the other side of the spectrum. They are a little younger than Austen, but can’t walk on their own and are way behind on their verbal communication. We were commiserating about how our children were doing during the pandemic and I didn’t want to share much. Yes, Austen has been a terror without applied behavior analysis therapy. But even her biting of siblings and refusal to sleep are easier to deal with than the seizures my friend’s child experiences day in and day out.
The thing is, this is not where we were last year. A year ago, Austen had seven to 10 tonic-clonic seizures a day. Almost all of them were status. She had fully regressed back into diapers. At school, their only goal was to get her to play with other kids.
We were lucky. We seem to have found our “golden ticket” in Fintepla (fenfluramine). Austen now averages about one tonic-clonic every two months or so, hasn’t had a status seizure in over a year, and cognitively, not only has caught up, but also leaped ahead.
Thankfully, special needs moms are a rare breed. There doesn’t seem to be much jealousy or mom-shaming among us. My friend told me not to feel guilty, and she rejoiced with me at how far Austen has come. I told her I would pray for the same for her child, and she said she would pray that Austen continues on this good path. She reminded me that it is important I rejoice in these times of peace when they come because they aren’t guaranteed to last.
And you know what? She was right.
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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