It can be lonely, make your own village

17 Sep

One of the big pieces of advice all those “10 Tips for Special Needs Parents” always seems to give is “Join a support group”.

Which is all well and good if you can.

But to be frank, most support groups are labeled.  Down Syndrome Support Group.  Autism Moms.  Cerebral Palsy Parents. It’s hard to find a local “Ultra Rare, 1 in 100,000 Births Club” or “Generic Special Needs Support Group” out there, so there is a whole population of us out there wandering loose, uninformed, scrabbling for any sort of information on our rare or undiagnosed situation.

Yet those writing about special needs support swear that one thing to do is find a support group.  They talk about their Moms Nights Out, which include pictures of ladies with smiles and glasses of wine.  They show their walks and runs and how they light up the night for their cause, while we rare and undiagnosed sit in the dark, wine-less.

The most surprising thing for me was to find that many parents, as much as they want their child to be accepted and included, will exclude other parents for not having the right diagnosis.  “Sorry, this is our private club, you can’t join.”  I could see all the similarities we had as special needs parents.  They saw the differences.  We didn’t have the code word, there was no magic handshake, no sharing of information, no wine nights out.

If you’re there, cast off in the cold, I’m here to tell you – feck ’em.  Make your own damn village.

Support doesn’t have to come with a label.  It doesn’t even have to come with shared experiences.  What I’ve learned is that it just needs to have caring and interest, ears to listen and shoulders to lean on.  Some of my most supportive people in my life don’t have a child with special needs.  Some who have rejected us do have children with special needs.  Life is funny that way.

When I realized that not having a diagnosis excluded me from all the local support groups, well, I was annoyed.  But when my husband went “You don’t even like them, why do you care if you’re friends just because of your kids?”, I thought “Wow, he’s right.  Eff them. I’m fabulous and they should want to be my friend.”

(Yes, all that ego-boosting therapy DID pay off!)

Over time, I learned that support came in all forms.  It came from friends I met at the coffee shop in the mornings.  It came from those friends I made in college, who let me ramble and sometimes even get bitter with them.  It came in the form of fabulous therapists and teachers and school staff who proved that helping Maura was the first priority, who showed love for my child, and made otherwise unbearable situations bearable. It came from family who accepted Maura instantly as just another part of the clan, equal to the rest of us.  It came from my older children, when they showed concern for their sister when she was sick, and annoyance with her when she was being a bratty little sister.  It came from my husband, who was in this 100% with me.  It came from strangers online, who did understand what I was going through. It came from my older kids friends, random teens who walk into my house and accept Maura for who she is, and let her join in.  And eventually, it even came from other special needs parents, those more open-minded fun ones who could see all the similarities we went through despite our different labels.

I still don’t have a labeled support group.  But what I have is a great group of people around me, and it is enough.  My village is fantastic one, full of clowns and fools and people who get me. It’s all good.  Because at the end of the day, well, I am usually too tired to cry anyway, and would much rather laugh over things.  Or talk about anything else but special needs and instead discuss addictions to Pinterest or Doctor Who or books.  Most of all though, my village is very doesn’t need a code word or label to enter it.

My village is varied, just like my life.  My support group is wine with friends, internet groups, and old college roommates.  I may not have a labeled group to help raise awareness and do fundraisers with, but I have people ready to loan me an ear and hand me a glass of wine.  And at the end of the day, that’s what I really need.






6 Responses to “It can be lonely, make your own village”

  1. Amy September 17, 2014 at 10:53 pm #

    It’s sadly ironic that you were excluded from people who have been hurt by this very thing. I am finding that common bonds don’t need to be the obvious ones,and the things that draw people together need to be more than merely situational. At least for the connections to last and have meaning. While I am sorry you had to go through that, it seems like it worked out for the better.

  2. franhunne4u September 17, 2014 at 11:10 pm #

    Should I be alarmed that you mostly expect wine? 😉

  3. Kerith Stull September 18, 2014 at 6:34 am #

    I never found solace in any traditional support group. It wasn’t until I found a Facebook group just for kiddos with our “somewhat rare” condition that I truly found support and “groupness.” I still find the best support from my rag-tag group of friends. Support comes in a lot of forms. Ya just gotta go find them (and bring wine!).

  4. Carol September 18, 2014 at 9:35 am #

    Have a glass of wine on me.

  5. Lori-Anne September 19, 2014 at 12:46 am #

    This is why I love you, Phoebe-who-I’ve-never-met! I am so happy that I have found your blog and found your FB group and have found my own group of online friends who understand, even if we don’t all have the same issues. My son isn’t diagnosed with anything yet, but I’ve been told the whole “list of things every parent must know to be an advocate”…join a group! I’d love to! Which one? 😦 Oh well. My on-line group of friends rock!

  6. boredfirst February 26, 2015 at 9:45 pm #

    Love this entry. We should all support each other, whatever the label. Wine at my house, any time!

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