16 March 2017


It seems like everywhere I go - every play date, get together, hang out, is dominated by parents of special needs kids. It seems like every conversation revolves around moms venting about their struggles. What the diagnosis is or is looking like, what therapies they are trying to get, what the daily struggles are like. ADD, ADHD, ODD, SPD, Autism. Do you want to know something funny? I feel like I don't fit in. I have a hard time relating. It looks to me like their whole lives revolve around their kid's issues and mine doesn't. I mean, Down syndrome affects us on a daily basis, but I wouldn't say my life revolves around it. Even though we all have in common that our families are not typically developing, it doesn't mean what goes on in our families is the same.

Sometimes I wonder if it is because my family's issue is easy to diagnosis. Down syndrome is there or it isn't there, and a simple test will give you a cold hard answer. There is no wondering, no second opinion, no outgrowing it, and definitely no gamut of medications to try to ease the symptoms. I don't know one single person outside of Abigail's class and my Down syndrome support group who has a child with Down syndrome. I never run into these moms at the library MOPS group. These other moms are all fighting a much different type of battle.

I also wonder if it is because our long-term goals are so much different. There is a very high expectation that children with ADD, ADHD, ODD, and SPD will all get steady jobs and move out of their parents' homes one day. Autism does not even definitively squash empty nester plans. There is a very small chance that Abigail will live independently, but it is significantly more likely that if she does not live with us, it will be because she's in a group home. There is little chance she'll be able to secure a job that fully covers her expenses in life. I've known this for 5 years and 10 months now, and I have come to terms with it. It's okay. My expectations for her and my future are much different than moms of kids with different diagnoses and I wonder if that plays a role in our daily behavior too.

I just think it's kind of funny that I can sit in a room predominately made up of moms of special needs kids and feel like I don't fit in. It just seems like no one has a child with Down syndrome.

I do think there are lots of benefits to having a diverse group of friends - talking to a bunch of moms of kids with Autism, for example, can help me see my blessings (Abigail doesn't have the fine motor skills needed to pick locks, thank goodness) and help me reflect on my unique struggles, which can help me overcome them or at least come to terms with them. It's also nice to have a group of mom friends with our exact diagnosis too. Down syndrome requires significantly more medical intervention that most other special needs I run in to, and it's comforting to talk to another mom about acid reflux in a non verbal child and swap pediatric gastroenterologist contact info.

Even as a kid, I've always been a bit different and a bit of an outsider, and I think that experience comes in very handy as the mom of a child with Down syndrome. And as an introvert, I'm also completely comfortable being alone. It really does come in handy sometimes.

1 comment:

Cindy said...

Oh my gosh, I could have written this post! Even the part about not fitting in at a party for parents who have kids with special needs. And being a bit different an an outsider as a kid... it was like reading a page from my diary!