Tuesday, March 12, 2013

Where do we fit?

Ever since Griffin was diagnosed with Asperger's, I have struggled to find my footing and figure out where we fit. 

I don't feel like we fit in with families coping with debilitating disabilities.  What do I have to offer to a parent of a child who isn't mobile, can't be potty trained, or has a severe cognitive disability?

We don't even seem to fit into the world of autism.  Griffin is on the high functioning end of the Autism Spectrum, but so many kiddos on the spectrum are nonverbal or struggle much more with daily life than we do. 

Yet I can't pretend that we don't have this diagnosis.  I don't quite fit completely into my old spot as a mom of three healthy run-of-the-mill "neurotypical" (you're not supposed to say "normal") kids.

Not knowing where we fit has paralyzed me and kept me from moving forward in any direction.

Then my friend Jessica invited me to attend a conference with her.  She has a pretty adorable four-year-old son with autism.  Maybe she just wanted a companion for the conference she was already planning to attend.  Or maybe she recognized my wide-eyed paralysis and decided to give me a gentle nudge. 

So last Saturday Jessica and I ("the Jessicas") attended a conference that helped us understand how to work with our kids' schools to create a successful IEP (Individualized Education Program).  This is a crucial starting point for me since Griffin is starting kindergarten in the fall and I have NO idea how to work with the school to help Griffin have the most successful school experience possible.

There was just one problem.  The conference was for parents of children with disabilities. 

I've never considered myself a parent of a child with a disability.  Is Griffin disabled? 

The conference was filled with a mix of parents/guardians and educators (teachers, therapists, etc.).  When everyone at our table was introducing themselves, I was afraid to tell everyone I have a son with Asperger's.  I mean, one mom at the table has four children and each has special needs ranging from ADHD to hearing impairment.  Another had a son with Downs Syndrome.  And two were special education teachers/aids who work with severely disabled children.  I felt like I might get boo'ed out of the room. 

But guess what?  No one even flinched when I introduced myself.  And the conference was totally applicable to us.  Not only did I get to spend time with my friend, but I also gathered lots of valuable information.  Plus two of the women at our table invited us to another workshop just a few days later.

I decide to take hold of the opportunity, so Monday evening I attended a workshop called Educational Rights and Responsibilities:  Understanding Special Education in Illinois.  This workshop was incredibly informative and helpful for me.

But here's another confession:  I never envisioned any of my kids being in special education.  I guess the words "special ed" tripped me up just like "disability" did. Please hear me that I do not in any way want to offend anyone who is in the special education system.  This is just all so new and confusing to me.  I'm trying to wrap my head around the fact that these terms and services apply to my son.  Or do they?  I don't know.  I'm only two conferences in.

One thing I have learned through this last week:  people who work with or parent kids with special needs are incredibly gracious and compassionate.  No one belittled my parenting struggles just because Griffin's disorder isn't more devastating.  I didn't have to explain how Asperger's affects kids' behavior.  I also didn't have to justify my presence at the conferences.  These people accepted me and even applauded me for being proactive and gathering information.  They offered me helpful advice and gave me lots of resources and contacts to help me. 

I used to say that we were in "no man's land."  Now I think of it more as we're in a neutral spot with ties to both worlds (the general neurotypical population and the world of diagnoses, disabilities, IEPs, and special education).  It should be interesting as we create our own road map through these worlds!


1 comment: