Tag: Cerebral Palsy

How to raise self-advocates

I think it’s safe to say that I’ve always advocated for what I want and need, when I know what that is.  My parents did a bang-up job, whether they knew it, of teaching me to ask for what I want and need.

Look at that face.  I was definitely up to no good.

In high school, I figured out very quickly how to get close to teachers and get things such as slightly better grades (offering to do all the photocopying goes a long way) and even a cup of coffee from the teachers’ lounge during my junior year.  Hey- I never said I used my powers for good!

Honestly, I’m not really sure what my parents did to create this person that I am.  I seldom make much sense to myself.  On the outside, I may appear social and easy going, and there are times when I truly feel that way.  But the inside may feel totally different.  And then other days, I feel giddy and child-like, but must maintain a professional exterior:

Photo by Dave Burbank Photography

I think I’ve come a long way in the last few years.  I remember a conversation that I had with a friend and some of her friends (I really didn’t know them well, and it’s possible that I did not make the best impression).  We were talking about what to do when our kids need services at school but the school isn’t on board.  I stared in amazement at the people around me who were all saying they didn’t think they could insist on what their kids needed.  Um…what’s that now? As I listened to them say these things, I saw something very interesting happen with their body language.  They physically became smaller.  Their bodies, their voices, everything about them shrank.

My reaction was to get bigger, louder, more powerful.  “These are your children.  If you don’t advocate for them, who will?”

Blank stares.

“No but really!  Your job here is to go to the school district and demand for the services that your child needs to succeed!”

I may have lost them at that point, which is why I say I’ve come a long way in the last few years.  In part because I’ve been working directly with families and want to be professional because I love what I do!  And in part because I’ve learned more about who I am through raising the boys. I’ve learned how better to connect with people to help them figure out what they need, because I’m simultaneously doing that at home.

I think I was trying to write about how to teach our kids to be self-advocates, and it may seem that I’ve wandered away from that path.  I believe that it’s a two-step process.

  1. We must learn to advocate for our needs as well as those of our children.  We should learn to recognize what is truly needed and not be afraid to ask for it.
  2. Through that, and through teaching our children that we respect that their bodies and their needs are truly theirs, we will have done what we are here to do.

My husband and I watch the show Speechless, a sitcom about a family who works together (and sometimes work in spite of one another) to get what they need.  One of the kids in the show (J.J.) has cerebral palsy, and the mum (Maya) is a staunch advocate who fights for (and usually gets) what J.J. needs.  We love this show because it does not steer away from using humor as well as talking about some really serious issues faced by those with disabilities.

In the most recent episode, Maya helps a group of other parents by teaching them to demand what they need.  For the first time in a long time, she feels that she’s really doing something incredible by helping these parents find their voice.   It goes sideways when the district realizes that her son is getting way more services than they’d ever provide…(watch the video clip below)

Maya and the District

SPOILER: In the end, she works with the principal to find cost-saving solutions to meet everyone’s needs.

Just for fun, because he’s awesome, here is a video of Zach Anner sharing his views on the show:

On a side note, did you know that Micah Fowler, who plays J.J. DiMeo on the show, actually has cerebral palsy?  In a bold move, Hollywood actually cast an actor into the part he was born to play.  It doesn’t happen often, and it’s reason number 1 why this gal doesn’t watch shows about autism (because despite the fact that 1% of the world’s population is autistic, Hollywood can’t seem to turn up an autistic actor).

So.  To sum up:  Ask for what you want, even if you think you won’t get it.  Teach your kids that their bodies and their thoughts and feelings belong to them.  You won’t be sorry at the result.  I promise.