about the author:
Danielle Dwiggins is a nurse, wife, and mother. Her son has Duchenne and she was recently diagnosed as a carrier of Duchenne Muscular Dystrophy.
Finding Our People
My son Andrew has always been a bit different.
At 6 months old he wasn’t smiling at us, grasping or reaching for things, and looked right through us. With therapies and time he made progress, but something was definitely wrong. Everyone told us he would catch up and everything would be fine. I was very concerned about autism, but no one believed me.
It took two long years of pushing for answers, fighting others’ opinions, and lots of doctor appointments to find the cause of his delays: Duchenne Muscular Dystrophy. It wasn’t autism like we expected; we weren’t prepared for this. Our lives were suddenly taking a completely different path and we couldn’t stop it.
Our world was spinning out of control as we tried to explain DMD to our friends and families. The looks of pity and sympathy on their faces stung. We felt totally alone in our grief.
Then we found groups on social media full of people experiencing different phases of a similar journey. We felt accepted and understood. No one was judging, no one was feeling sorry for our family or our son. We had a new identity: family with DMD.
Andrew continued to make progress but began having behavioral problems. After another long waitlist, we saw a developmental pediatrician for yet another diagnosis: autism. The devastation of it hit differently than when he was diagnosed with DMD. We knew the diagnosis was coming and that more resources came with it.
While grateful for the new resources, we were unsure what community we now fit in. Andrew has autism, but it’s not autism. It’s Duchenne, but it’s also autism. He may never have a normal life. He may never have a normal DMD life either.
What happens when you don’t know where you fit in? You do what you can to figure it out.
I found my people – the moms of boys with autism and DMD – and hung on. They’re the ones there for the progress and the defeat. We persevere through all the abnormal craziness this life throws at us – the physical regressions, the stimming, and the meltdowns.
And without this community, we are merely trying to survive.
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