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Article “My Daughter Is Not A Diagnosis”

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My daughter has just turned 1. She has just started crawling, has 2 teeth and 2 more coming through. She is babbling nonstop, she loves her food and is drinking from a sippy cup by herself.

She sleeps through the night and has the cutest girly giggle. She also has Down Syndrome.

Ariel was diagnosed at birth and it was obviously a shock for us. I knew nothing about Down Syndrome.

A few years ago there was a young man with Down Syndrome that passed me on the way to the train station in the mornings. He always gave me a high five and said good morning as he walked past. It always made me smile.

Other than that I had no other contact with anyone who had Down syndrome.

Immediately I decided to embrace my daughter’s diagnosis and after we settled into our new journey I got to work on spreading awareness and advocating for her and others with disability.

Last week I was at the pool swimming with Ariel. It was a quiet morning and there was a young man in the pool at the time and he happened to have Down Syndrome. He was around 16-20 years of age. He had goggles on and he was minding his own business. I could not even catch his eye to give him a smile.

He was using the slide and doing little belly flops as he walked up and down the pool. It was relatively shallow so he was making a splash each time. As I watched him from afar I noticed he passed by a lady who was standing knee deep (she was clothed) minding her young daughter. He accidently splashed her legs a bit and it got her attention.

The way she reacted was horrible.

She was looking at him like he was some kind of freak and she was looking around to get attention of anyone surrounding her to give a look of “what the….?” I was staring at her so she caught my eye and I gave her a strong look of disapproval. She stopped immediately and I could see she felt a bit embarrassed by her silly and cruel behaviour. Ariel was facing me so she didn’t see her. There was nothing abnormal about his behaviour in the pool and I know that if he was a young man without Down Syndrome she would have given him a second look.

As I was getting out of the pool I passed by her and she saw Ariel. I could tell by the look on her face she felt ashamed. I didn’t need to say a word.

I don’t know this lady so I cannot say why she acted like she did. I do know that in general people don’t know enough about Down Syndrome so they make their own conclusions. They underestimate people with Down Syndrome and their capabilities.

90% of woman with a prenatal diagnosis choose to abort their baby and I think this is based on fear and old information. Trust me, these days with early intervention programs people with Down Syndrome lead very fulfilling lives.

Over the last year I have learnt a lot. One of the main things I have learnt that Ariel is not a diagnosis. She is NOT any of the following:

  • A downs baby
  • A Down Syndrome
  • A downsy
  • A downs kid
  • A mongoloid
  • Suffering from Down Syndrome

She is a human being. She happens to have an extra chromosome that causes some physical and mental delays.

She can still feel sadness and she can experience joy. Just like me, just like you.

Main image courtesy of Shutterstock.com

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Comments

  • This is lovely. Ariel will live a happy and fulfilling life just like any other person. This is my beautiful sister.

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  • Great read ! My youngest 97yr old) has Down Syndrome too and we have heard these terms as well. I do think though that people do not always use these terms in a harmful way but more out of ignorance and not knowing.
    Most of the people love my girl and when we go places like the pool, other visitors can’t wait to meet her again.

    • Oh man, typo ! My youngest is not 97 yrs old, but 7 ;)

    Reply

  • AMAZIng article. And excellent way to describe the situation. Kids with additional needs are still people

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  • Powerful article. Exactly right she’s a human being

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  • A lot of people with Cerebal Palsy are also treated the same way. I know a girl who has a mild version of it. Her parents were told she would never sit up, crawl or walk and suggested she “be put in a home”. They fought hard and long for her to have intensive physiotherapy. Her only problem now is her leg muscle strength does cause problems sometimes. She went cycling with an experienced cyclist who sometimes had trouble keeping up with her. She went on to be in the Paralympics team and rode overseas. She got a job quite easily when she left school. Her only other problem is sometimes she stutters.

    Reply

  • I totally agree with you, well said.

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  • They are beautiful people, but society still has troubles accepting anyone who is slightly different to the majority

    Reply

  • This is really lovely, people with disabilities are heavily underestimated and overlooked. We need to rethink how we treat others in our society and not discriminate or stereotype based on differences.

    Reply

  • Everyone needs to be treated equal and not looked down on because they are different in looks or behavior.

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  • Thank you for sharing, I often feel that we are all a little uneducated about anything that is not considered the Norm!! I believe these stories and others regarding all sorts of issues like Breastfeeding and Autism , They need to be shared and shared continuosely to educate everyone. Its not always Ignorance but fear of the unknown. so Thank you for sharing and putting it quite simply ‘She is a Human Being”.

    Reply

  • Ariel is beautiful. And so is every child.

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  • Such a beautiful story, these children have a beautiful energy.

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  • And I bet your daughter will also grow into a wonderful young lady with a mother who is as devoted as you.
    I know several families with a child that has Down Syndrome and I have found that those who spread awareness and advocate on behalf of their children have amazing children. Unfortunately I have also seen mothers that treat their child as disabled and the child grow up not being able to fend for themselves.
    It is like all parenting, the more you put in the more the child benefits. And I am sure that Ariel will be an amazing young lady as she grows!
    Well done.

    Reply

  • What a wonderful mum you are. It is a shame that people can be so “ignorant” in this day and age. I wish you and your daughter a wonderful, happy and healthy life..

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  • CHILDREN NEED LOVE AND KINDNESS IT IS TRUE
    KNOW FEW KIDS WITH DOWN’S SYNDROME LOVABLE AND HAPPY TOO
    CAN TEACH US A THING OR TOO

    Reply

  • Your daughter sounds delightful.
    With luck the woman in question has learnt her lesson and she’ll take a long hard look at herself to become a better person for it.

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  • sounds awesome and looks great

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  • bravo, well done, good on you and all the other phrases of praise! So often today people are judgemental of things they do not understand or fear, JUST BECAUSE THE PERSON IS NOT YOUR CLONE DOES NOT GIVE YOU OR ANYONE ELSE THE RIGHT TO JUDGE THEM AND FIND THEM WANTING! Every person has a place in this world and the right to enjoy it free from condemnation and prejudgement. Again well done.

    • Thank you so much, I really appreciate your kind words of support :)

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  • Yes you are so spot on. Thank you for your kind words of advice :)

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  • My son has a physical disability and gets asked by kids and adults alike “Aaaw what happened?”
    So we give a brief answer and say, Jesse had meningococcal when he was younger and this caused some of the nerves in his left leg to die. He doesn’t have these nerves to help tell his leg and foot what to do so, it turns in a lot.”
    I think its very important not to get down about things like this and awareness and education are what the community needs. When Jesse was in a wheelchair a lot of people stared. Instead of looking the other way, we would smile and wave and encourage people to talk to us, rather than rush their children away, telling them not to stare. Children are inquisitive creatures. Teach them.

    • Yes you are so spot on. Thank you for your kind words of advice :)

    Reply
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