Sometimes I forget two of my children have disabilities. My youngest has Down syndrome and although it’s physically obvious, I don’t look at her and think, Down syndrome. I mean, I know she has Down syndrome but I just see her – my daughter – the seven year old that owns my heart.
If I had to choose one word to describe her, it would not be “disabled,” it would be RASCAL. It’s her nickname for a reason.
I also have a child with cerebral palsy, we adopted her from Ukraine right before her fourth birthday. If I had to chose one word to describe her it would not be “disabled” either, it would be RESILIENT. And while the word resilient might be connected to her disability, it speaks far louder about her character and gumption than it does about her diagnosis.
I suspect that if you asked 100 special needs parents to describe their kids in one word, their child’s disability will not be the first word that comes to mind, they most likely will mention a character trait, because parents know everything about their kids, and that knowledge extends beyond disability.
If you only know one thing about children with disabilities, know this:
Children with disabilities are children first!
I won’t tell you that disability does not matter, because it does. I won’t tell you that disability is not an important part of who our kids are, because it is. But I assure you that disability is not what is most important, because kids are kids first of all, they are people, human beings with so much more inside of them than a medical diagnosis.
There is so much more to our kids than their diagnosis.
Our children, aside form their disabilities, have unique talents, abilities, strengths and weaknesses.
As their parents, we know the details of who they are, like:
Their unique sense of humor.
Their favorite toy.
The song that gets them dancing, or shaking, or smiling, or vocalizing.
What makes them mad.
What makes them smile.
Their favorite activity.
How they push their siblings’ buttons like only siblings can.
That deep belly laugh that is one of the best noises ever!
What makes them sad.
Their favorite food (and how to hide the pureed veggies with the favorite food).
That one thing they are really good at.
That one thing that is a big struggle.
And all the other details of their life that makes them who they are.
Our children are gifts, precious gifts that we get to call our very own, we love them something fierce.
So if you only know one thing about children with disabilities, know this:
Our children with disabilities are children first, fearfully and wonderfully made!
Author’s note: I asked my friends on Facebook what one word they would use to describe their kids who have disabilities, I cannot stop smiling from their responses, join the conversation, what word would YOU use?
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I have been reading your blog posts for some time. I feel it is time to introduce myself. I raised a special needs child with cerebral palsy. He had spastic quadriplegic cerebral palsy and passed away eight years ago at the age of twenty-eight. Next month my book based on his life will be released on Amazon and my website. The book’s title is Our Special Child: Jason’s Story.
Having and raising a special needs child, for me, taught me about real life and my son, who is my guardian angel, is now guiding me to help others.
Judith I am so glad you introduced yourself, when your book is available, please stop by my Facebook page and make sure to post a link on the timeline!
Love this! When my oldest son was younger, teachers would blame his clowning around behaviors on his Down Syndrome…I know many children wwithout DS who love the attention of being the class clown, so it always seemed strange to me that people didn’t just see it as a part of his natural personality. He LOVES being a funny boy! I really think that a diagnosis is just one facet of a child’s personality that could be included in your fun list of characteristics–one that carries no more and no less significance than any other feature. They all combine to make each child amazingly unique! We have been entrusted with amazing masterpieces!!
I am not a parent. I am learning support assistant at a school for children with multiple and profound learning disabilities and a personal assistant to a lad with cerebral palsy. I regularly care for 6 young adults with disabilities and it is not often I see their disabilities. What I do see is their musical genius, their care and consideration for those around them, their passion and fight for independence, their tiring attempts to explore communication, amazing senses of humour, love in the details, protection of personal preferences, pure joy in their faces, kindness that knows no boundaries. I love each of the children I have the pleasure of walking along side. But it’s not often I see their disability.
I’m really enjoying this blog. Even though I work at home with a family, it’s a wonderful insight into family life.
Kate
Hi Ellen,
Your writing goes right to the heart of the matter! I don’t know if I can describe Amy in only one word!
She is delightful, funny, happy, independent, stubborn, kind, friendly, loveable!
Those are all great words for Amy 🙂