I Don't Fit In (Special Needs Mom post) - February 1, 2011

There are lots and lots of support groups for parents of children with special needs. There are groups online and there are groups offline. There are blogs and there are message boards. There are get togethers and there are share groups. Some are general groups, some have a focus (in my case, a focus on parents of kids with cerebral palsy). Lots and lots of options.

And I don't feel like I fit in with most of them. Or, well, I should be less pessimistic - I haven't found my tribe yet. Here's how I've felt after participating in certain groups on or offline. (For the record, it is rarely all of these at once, and I don't feel this way within every single group/gathering I've joined. I just wanted to collect this all in one big obnoxious post)...

1. I'm too loudmouthy. Uh...yeah. I'm always the one raising my hand or saying something or talking about research or something. And as a corollary to this, I don't take it well when someone starts telling me why I should or shouldn't do something, what I should or shouldn't try, why my choices are invalid, or why they wouldn't make those same choices because mine are wrong. See #2...
2. I'm too crunchy. I had a natural birth, I breastfed my daughter (I still do...), I never supplemented, I waited until 6 months to start solids, we co-sleep, I carried her in a mei tai or an ErgoBaby carrier until she simply refused to be in one (and I still hate the stroller but since she can't walk, it's a necessity). Many times children with special needs simply cannot do these things for medical reasons, and I get that. It's not a judgment on anyone else that I did or do these things - I do what I do, you do what you do, and I respect that, particularly inside the boundaries of this community we share. But sometimes it feels that when it comes up that I do these things, it's taken as a judgment when it's not, so I have to keep quiet about what I do and just smile and nod a lot. And sometimes I want to talk about the challenges and struggles within these choices but have a hard time finding someone who understands.
3. My kid isn't disabled enough. She's not hospitalized, she's not on medication, she can walk with assistance, she has some words and signs, her prognosis is that she'll walk and talk and do all sorts of things. She's also hypotonic (many children with CP are hypertonic), she wasn't a preemie, she didn't have complications at birth, we didn't know she had any issues until she was 6 months old, she didn't get a diagnosis until she was over a year old. I rarely find people who can identify with my story - a story I still am baffled by and a story I really do want to share. 
4. My kid isn't on the autism spectrum (at least as far as I know!). Some of the general support groups I've found are made up mostly of parents with kids on the autism spectrum. That's fine, and we have many things to learn from one another and many things that overlap, but the issues we face can also be very different. 
5. I'm not the right flavor of religion. I encounter a lot of religious people in the special needs universe. That is fine, I have friends who believe a wide range of things from agnostic to very faithful (or whatever you call it). I'm Jewish (though not as observant right now as I would like to be), but I also have issues with my faith and my child. I'm just not looking for answers within my religion right now.

I know my tribe is out there. I've read essays by parents with whom I identify, I've met people on occasion on and offline, and I keep trying and trying. I have friends who are nothing like me and who I still like and share with. But I want to find where I fit in within this community. I'm sure someday I will.

The usual disclaimers apply. This is just about me and my experiences. I reserve the right to change my mind about any of the above at the drop of a hat. I'm just getting a few things out of my system. You don't have to like me or agree with me. Sometimes I don't fit in because I'm being stubborn or I'm a brat. Sometimes I find someone who clashes with all five of the above things and we still find common ground and work well together. I reserve the right to not approve your comment for whatever reason. I like chocolate cake.