Born This Way......Sigh

I'm the very proud mom of an almost 13 year old son with Down syndrome.   I wasn't overjoyed to learn of his diagnosis hours after his birth....like seriously so not overcome with joy.  I walked around with a dark cloud over my head for 4 years.  It was bad.

I've come such a long way since then.  I wouldn't want my kiddo any other way.  I feel like I'm such a different woman and mom because of him.  Patience has never been my strong suit.  Thanks to my kiddo, I have to say that I actually have patience.  It comes and goes but I'm way more patient now than I was when I had my first kid.

 I've  learned to not project to much into the future, to live in the now and to appreciate what my son is doing today, not focusing on what he struggles with. For parents of children with any special need, this is a tough one.  I'm no different.  My son is extremely speech delayed.  Children with Down syndrome have very low muscle tone which affects their development.  For instance, my son didn't start walking until his was 3 years old.  His trunk (core) was so weak that he couldn't hold himself up.  The same is true with the muscles in his mouth.  Certain words and phrases are intelligible, but having a full blown conversation is heart breaking because I have no idea what he's saying, and he has a lot to say.  On top of the low muscle tone, many people with Down syndrome also have Apraxia of speech.  My kiddo has a pretty severe case of this.  It's when the muscles in the mouth and the brain don't work together to get the sounds out.  My kiddo has the cards stacked against him in the speech department.

While I've accepted my son's diagnosis and who he is as a person, I still have days where I get bummed out because I can't understand him and he's trying so hard to be understood.  Or when we have to battle the school district to ensure that his rights are being met or when I see him being marginalized by typical peers or family members.  At almost 13, we still have to help him with self-care tasks, get out of bed in the mornings and get dressed for school.  It gets old and depressing at times.

Which brings me to this new reality TV show called Born This Way on A&E.  The show focuses on young adults with Down syndrome and their families.  The cameras follow these adults as they navigate their every day lives.  These adults have the same desires as their typical peers....to have a boyfriend or girlfriend, to live on their own, to be married, to work.....The parents have to learn to let go and to help them live out their dreams to the best of their abilities.  That's my take on the show.  I haven't watched it, not even a minute of it.

I've been approached by 3 different people asking me if I've watched the show.  2 are good friends, one of which has a daughter with special needs.  The other is a fellow mom walking the same journey as me.  Normally, I pounce on things like this.  I like to see people with Down syndrome being successful and as independent as possible.  I like to read success stories, watch special interest stories on the news or online.  Having said that, I can't bring myself to watch this show......

Why?  Because it's going to hurt.  Watching these young adults who are pretty independent and verbal is reminder of everything my son is not.  We do so much for our kiddo.  Partly because he's so darn slow and we're always rushing that it's easier to do things for him.  I know terrible excuse but it's true.  Will the speech come?  I'm hopeful that it will.  It's just going to continue to take his effort, ours and time, a lot of it.  Seeing these young adults is going to project me into imagining a future that may not be his.  Going there hurts a lot.  I don't want to go there right now.  I feel like I'm the minority on this issue.  I've seen people get upset by fellow parents of children with Ds who like me have chosen not to watch.  They can't imagine why someone like myself doesn't support the show.  I do support the show.  I think for those new parents who have just received a diagnosis or have little ones this show is just what they need.  Had this show been on the air 13 years ago, heck yeah I would've been all over it.  I would have hosted viewing parties for sure.  I also feel like this show is great for all people to see that adults with Down syndrome have the same dreams and hopes as their typical peers.  For families who have a relative with Down syndrome to try to understand what the parents of these young adults go through as they transition to this new phase of life. I know where my son is now and it doesn't look like he'll be able to do anything that these young adults are doing.  I sound like such Negative Nelly.  I know I totally do.  However I will not stop pushing him to do better, to take him to speech and to practice at home with him.  I see how much he's grown and how hard he tries at everything he does.  I see him comfortable in his own skin at church or at Boy Scouts.  He thrives at sleep away camp without me or his dad or siblings.  Will he get to where I think he needs to be to be able to be cast on a show like Born This Way?  Probably yes.  I just see what's in front of me today and there's still a lot of work to do.