The Sub-Culture

There’s a lot of stuff rumbling around in my head and heart lately related to being the mother of a child with special needs.  It mostly has to do with the sub-culture that is Special Needs Parenting.  Many have asked if I/we have found a support group or someone in a similar situation to talk with.  The truth is, while I do have a couple of friends who have kids with special needs and we message on Facebook sometimes, I’m leery to jump into the sub-culture.

While well intentioned and fiercely in love with their children, I have been overwhelmed, annoyed, disheartened and made to feel inferior by more than one parent of a special needs kid and their unsolicited advice.  Overwhelmed and disheartened when it seems all these moms (in my experience, it’s been moms I’ve spoken to) can talk about is their child’s latest struggle or success, therapy or doctor appointment.  I’ve been told to hold on to hope and to fight harder for my child and the services he does and will need.  I’ve been questioned about my ability to work full time outside of the home and keep up with Connor’s needs. 

Frankly, my life is crazy enough.  I haven’t been wanting to take it up a notch by entering into this kind of community.

I also think I have a fear of hearing and seeing what might be ahead of us.  I don’t think I’m in denial about Connor’s diagnosis and what that might mean for him and us, but it is quite easy to just look at the here and now.  Being around other kids with special needs and their parents scares me.  Scares me enough that I had decided not to go to the Joubert Syndrome conference this summer.  I had a physical, anxious reaction every time I thought about the conference and interacting with other JS families.

So all of this has been on my heart the last couple of months.  I’ve really wrestled with these feelings as my extroverted side has always driven me to engage in groups, meet new people and go to things that I can learn from and have fun at.  To all of a sudden feel like you want to do the exact opposite has been hard.

But I’m entering a new place with some of it, realizing that this is a community and sub-culture I must be a part of in some way so that I can be the best mom possible for Connor.  We’ve decided to FOR SURE go to the JS conference.  Brent really wants to go.  It’s in Minneapolis so we’ll be able to see friends and family and bunk up at friends’ houses for free. And we won’t be able to go in 2015 because of the ELCA Youth Gathering being the same time, so it would be four years until we have the opportunity to go again.  And while I’m still nervous and not sure, I don’t feel like I’m going to throw up every time I think about going.

I joined the Facebook group for JS Parents.  I’ll probably just lurk for a while and see what folks are talking about, but it’s a step.

I’ve also Googled a family nearby who has a daughter with JS.  She was featured in a local paper not too long ago because of her trip with Make A Wish.  Not quite ready to call yet, but I have their number and hope to make contact with them this spring.

So I’m dipping my toes into the sub-culture of Special Needs Parenting.  Curious, wanting, leery and ready to defend our family’s unique situation and decisions if need be.  I ask for your prayers as I navigate these unfamiliar waters!

Cute picture of my little Valentines just because!