Mom, I Hate Having Down syndrome

down syndrome

“Mom, I hate having Down Syndrome.” My 14-year old daughter told me this the other day.

Honestly, I sat there for a minute because I didn’t know what to say. It wasn’t a big surprise to me because she had implied in the past that she wanted nothing to do with Down Syndrome.  Our family does not attend Down syndrome community gatherings and she does not participate in the special education program at her school because I finally gave up when she would no longer engage with the class or teachers.

But now, these feelings seem to have spread over into other areas of her life.  I’m afraid she feels like an outsider in both worlds… the disability world and the typical world.

Watching Something That Will Never Go Away

First, let me tell you that I am not a psychologist or licensed medical practitioner of any kind. Just a mom….watching her child struggle to figure out where she fits in and wishing more than ever that I understood how to approach this issue.  Unlike her two older sisters, I can’t tell her it is something she can change in herself or grow out of in the future.  The 47 chromosome thing is permanent and some how, some way, she will have to learn how to fit that extra chromosomal design into a world that is built for 46.

So why a blog post on this issue?

My Daughter In Preschool

My Daughter In her preschool years

I guess to share this concern with other parents because I’m sure my daughter is not the only one who feels this way. I also wanted to prepare younger parents for what the future may hold for their child and that they need to be aware.  Our daughter’s best friend with Downs  feels the same way as our daughter so I figure it must be somewhat common.

School is tough for kids no matter what but I think it is even more difficult for our teenagers with special needs because they are old enough and smart enough to figure it out.  The separation of abilities and communication skills has begun to really take hold during this time period too and it becomes very apparent that our teens struggle to keep up with the rest of the kids.

Solutions?

Well, I have thrust my daughter into the typical world even more to try to help her overcome her fears of being different.  This may seem harsh, but I’m not doing her any favors by helping her hide.  She is going to have to come to terms with it and find solutions or she is headed for a pretty dismal existence as an adult.

I’m safe about the choices we make and I do not put her in situations which could cause her harm.  But I did talk to the athletic director about her being the softball manager this spring and how we can open her eyes to being part of an organization at school and making friends.  Personally, I always thought she would be on the team which seems to be the going thing in the world of Down syndrome these days, but that would be too much for her to handle and I’ve learned to accept this.

The Challenge Of Making Friends

I also tell her daily that she is loved and that the kids at school really want to be her friend. Unfortunately, she has built up a wall around her that makes it difficult for the kids to get close to her. Ironic isn’t it?  They want to be friends and she pushes them away because she thinks she’s different.  The only positive part of it all is that it IS somewhat NORMAL teenage behavior.

Outside of the realization that this is a real problem for my child, I’m waiting for these dreadful middle school years to come to an end and I’m addressing each issue as it arises.

I would love for our parents who have already been there to share their stories and solutions. Stay strong, friends!

Valerie

Written on 2013/04/11 by:

Valerie

Valerie represented tens of thousands of families of children with disabilities in Indiana as the Chairperson of the Interagency Coordinating Council for Infants and Toddler under three Indiana Governors from 2001-2006 . This experience, along with raising a young daughter with Down syndrome, has provided her with a unique view and understanding of the issues facing the disability community. You can read her blog at UnitedMediaNow.com