Tuesday, February 1, 2011

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.


  1. Hey, it's handstil/tehhils. I just wanted to say that I totally related to this. My 3 year old is basically non-verbal (no actual words, but he makes letter sounds) but he isn't on the spectrum. We had no indication anything was wrong at all until he just didn't start using single words when he was around one and then the spiral or tests and specialists began...We still have no prognosis but he's making improvements in sloooowwwww time. I endlessly do google searches for things like "3 year old doesn't talk at all" and get zero returns, it feels extremely lonely at times.
    Anyway, strength to you!
    I also blog publicly at tuttianimali.wordpress.com

  2. I think you and I have talked about this before, in a somewhat different context. I can certainly relate. In our own immediate community, I have found it hard to fit in, because my family and some of my views don't fit neatly into the mold, for personal and socio-economic reasons. I'm not so concerned about it anymore, because I am slowly finding my tribe of people with whom I can relate, even if it isn't about everything. I just want to feel comfortable and accepted. :)

    My daughter is on my mild end of Sensory Processing Disorder, so I don't fit in that neatly into that camp. She has some issues that we're addressing, but we're not in the totally game-changing moderate to severe camp (with ADHD or Autism overlays) so sometimes I feel silly complaining about what might seem to be a big deal for me but would be a blip on the radar for another parent living with a child with moderate to severe SPD.

    I think what's important for all of us moms is to just feel like it's OK to be authentic and that our choices are respected, whatever they may be.

  3. Marla, I hope you do find a tribe, and if you don't, perhaps you can start one. I think there are probably a lot of people like you out there who don't have the gumption or mouthiness (!) to get anything done. Maybe, when you have the energy, you can find them and get going in an alternate universe.

    And I also have to say that I'm super glad you like chocolate cake and that anyone who disagrees or calls it to question is dumb. :)


  4. Yep, definitely keep looking. I feel very lucky to have found a group and it's made a world of difference for me. But then, everyone in my group is opinionated and kind and respectful and totally not shy. I think Karen may be on to something. ;)