I have been Carly’d, Stevie Wonder’d, Ray Charles’d and Andrea Bocelli’d.

23 May

I read a post the other day written by Living on the spectrum: The Connor Chronicles called “Have you been Carly’d recently? The blogger has a child with autism and she talks about people comparing her child to Carly. You can read her fantastic post HERE.

If you have a child with autism you know Carly. The amazing autistic girl featured on 20/20. You can watch that video HERE.

Carly was completely non-verbal and autism rendered her unable to communicate with anyone until she found that she could use a computer. Once she discovered speech and language through a keyboard, her entire world opened up. She was discovered to be a “normal” highly intelligent young girl locked within the confines of her own body without the use of her voice. Her fingers became her voice and a link between her and the rest of the world was forged.

It’s truly an amazing and remarkable story.

Unfortunately…it is also a very very uncommon occurrence.

Most of the children who are autistic will not have an experience like Carly. 40% of children with autism also have the diagnosis of an intellectual disability.

Oli has that dual diagnosis along with several others.

Oli will probably never have a Carly experience. She might…but she probably won’t for several other reasons. Her diagnoses plus her blindness complicates matters. It’s perfectly fine if she doesn’t end up being like Carly. She will find her voice in another way.

Many autism families have been Carly’d.

Strangers, friends and family say “Hey! Have you heard of Carly? I bet that can happen to your child too!” This is what the Connor Chronicles blogger specifically wrote about.

I have been Carly’d.

A lot of us probably have been, by well meaning, good hearted people, who just want to give us hope.

The most interesting thing is that I have been Carly’d. I have been Stevie Wonder’d. I’ve been Ray Charles’d. I have been Andrea Bocelli’d. I think that it just happens when you have a child with a disability. People look to that one person with a similar condition that has gone above and beyond and exceeded all expectations of the prognosis laid upon him.

When Oli was born people would always tell me stories of so and so who was blind and did this amazing thing or that amazing thing. They would tell me that she would probably grow up to be a famous musician or a composer. A singer, a piano player, a drummer, a guitarist…because you know Stevie Wonder is blind and he’s musically inclined. So Oli will be too because she’s blind. All blind people have musical talents.

Ummm…well? Not really. No. She’s doesn’t really.

She loves music. She really really loves it.

However… Musically inclined? Not so much.

She loves to bang on everything. Is that drumming? I could probably put her in a heavy metal band and maybe no one would know the difference.

She doesn’t know how to keep a tempo. She bangs on the keys of a piano. She can’t actually “play” anything. She does love music, but I’m not so sure that she will ever be like Stevie Wonder.

And that’s okay.

Oli is Oli. She doesn’t have to be anyone else.

I really think that we need to stop trying to compare our kids with disabilities to others who have a similar diagnosis, but not so common outcomes.

If my African American friend had a baby I wouldn’t look at her and say “Do you know Michael Jordan? I bet your baby will be just like him because he’s black.” Ridiculous right?!

In a sense, that’s basically what we are doing when we say these types of things to parents of special needs kids. We’re placing extremely high expectations on that child and that parent because WE are uncomfortable. Because WE don’t know what else to say. Because WE want to give hope to that parent. Because we WANT to say the right thing.

The truth is…that parent might not need that kind of hope.

That parent probably already believes in that child and knows that they will be an amazing individual regardless of what others before them have done.

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7 Responses to “I have been Carly’d, Stevie Wonder’d, Ray Charles’d and Andrea Bocelli’d.”

  1. skytasio May 27, 2013 at 4:25 am #

    Hi! Yep, a lot of time has passed since you gave me a Liebster award.. one of those months ago… I finally did it! Here it is: http://hexwit.blogspot.com/2013/05/a-procrastinators-liebster-award.html

  2. skytasio May 27, 2013 at 4:29 am #

    ‘d! Good one! When people have Helen Keller’d Orion, I love to share a very interesting fact: Helen Keller was born sighted and hearing so she was already way ahead of congenitally deafblind children. This is Orion!

  3. mylifeaslucille May 28, 2013 at 7:53 pm #

    Yikes. That’s a good reminder to even those with the best intentions. It’s an example of how much pressure our culture puts on children and adults to be what we think they should be rather than who they ARE. My dad is an amputee. No one expects him to grow another arm just because he’s human. Right?

    • mommyhasissues May 28, 2013 at 10:57 pm #

      Yes. I know people really do have the best intentions. It just happens a lot.

  4. Flannery May 29, 2013 at 6:38 pm #

    Thanks for sharing my post! Love your blog, by the way.

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