When my daughter was born with Down syndrome, I determined she would be a “superstar.” I was going to do whatever I needed to do so she would rise above all expectations. She was going to challenge every stereotype out there about individuals with Down syndrome.
Yes, my child was going to be the kid with Down syndrome who was as “typical” as typical can be.
Twelve years in, and I realize how naive I was.
The experience of disability is vast and wide.
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Twelve years in, and I am keenly aware that my wish for her to be a “superstar” was rooted in my ignorance and negative disability attitudes. Back then, I thought disability was bad, so the closer you were to “typical,” the better.
As if my child’s abilities reflected her worth.
Those “dreams” I held were a reflection of where I was in my journey of understanding disability. I had so much to learn.
My child is not the “poster” child for kids with Down syndrome. Not if the purpose is to show how much individuals with Down syndrome can accomplish when the criteria is to be as close to “typical” or “average” as possible.
I believe the drive to be a “superstar” is because we want our kids to be accepted in an ableist society. Yet these very feelings, I’m afraid, are ableist on their own. I understand where they come from, because we live in a world that values talent, performance, and above all, intellect. Anything that deviates from the “norm” is often considered “less.” Our kids are not “less.” Not in any way.
Related: Having a Child With a Disability Is Not ‘Less’
Yet even till this day, if I am honest, it can be hard to see other children with Down syndrome who are the same age as my child be more “successful” in certain areas. I wonder then, “Have I done everything I can do to help my kid?” “Have I missed something?” “Why is my kid not able to do that?” It is a momentary pang that gives me pause. Then I remind myself it doesn’t matter. It has never mattered.
The measuring stick is not other kids with Down syndrome, just like the measuring stick for me is not the other amazing humans that have accomplished so much more in their lifetime compared to me. I am not a “superstar,” nor am I extraordinary. And it’s okay. This “comparison” game is not healthy nor beneficial for anyone.
All life has value. Ability and accomplishment have nothing to do with worth.
Related: 7 Things I Want for My Children With Disabilities
Ultimately, my daughter’s life is rich and full. Her life is just as valuable and glorious as anyone else’s.
My child has her own strengths. She has gifts and talents to offer the world. If the world doesn’t want her contributions, it is not on her, it is a result of the ignorance that permeates our society. A society that fails to see that everyone can contribute, and that diversity enriches the very core of who we are as people.
I don’t want my child to be a “superstar.” I especially don’t want her to ever feel like she can never measure up. Because she is more. She is exquisite. She is love. Her life beats to the rhythm of her own song.
She doesn’t need to be more “typical” in order to be “better off.”
She is precisely perfect to me because of exactly who she is.
Her life is valuable because she is human — because she exists.
Her life is full of possibility and light. I get to help her figure out what supports she needs so she can live her best life, not in the eyes of others, but her best life.
And nothing, absolutely nothing can measure the love and joy she brings to my life.
Nothing can adequately describe the pride I feel over her hard-earned accomplishments.
I thank God He chose us to be together.
She is my poster child. She is my superstar.
Always.
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My sentiments exactly for my daughter with quadriplegic CP.
She lights up my life and that is enough achievement.
Ellen. You nailed it. I sit here with tears in my eyes because your words expressed my feelings in ways that I never could…but they are my feelings exactly!
I have always believed that my son would give me the very best of himself and he has,I have had a very different view of bringing our boy up and that was to have no expectations and with that he has achieved so much and he has grown up to be such a wonderful man.He is giving us the most rewarding life I could have ever imagined we are all so proud of his efforts.No child should be measured against anyone that idea is just crazy we all are who we are and all deserve to be here.
Amen and amen. My Noah is the light of my life!
My child has her own strengths. She has gifts and talents to offer the world. If the world doesn’t want her contributions, it is not on her, it is a result of the ignorance that permeates our society. A society that fails to see that everyone can contribute, and that diversity enriches the very core of who we are as people.
Loved this!
Beautiful! This truth needed to be said. Thank you for keeping it real.
great post.
Thank you for this wonderful article. My son was not a superstar by media “standards” but he was a beautiful soul. His short time on earth he delivered meals on wheels, and made many many people laugh and smile and shared his heart with people. I have no doubts there are strangers out there that miss him. In his own way he WAS a superstar. I miss you son.
I wonder, maybe I’m one of that stranger’s who is missing your son after reading your feelings. Though I never saw him or know nothing about him or even don’t know his name, but somehow, I can relate to him, trying to visualize him and remember his lifestyle. Just never think Nikki, you are alone. Someone, somewhere is there for you, for your beloved!
Beautiful insight. God bless you.
OMG this is so my life… my daughter is 19 & I’ll see an article about someone with DS speaking as an advocate or a girl with DS modeling & I’m like why can’t that be her.. what did I miss in helping her excel.. she’s difficult to understand when she speaks but I have worked with speech therapist to work with her on annunciating wordS but it hasn’t helped. But.. she’s my best friend-I truly cannot imagine my life without her.
This is the most frustrating thing about Employment First. It is great that we are trying to help individuals with disabilities get a job, but no one wants to come out and say it: SOME PEOPLE CANNOT WORK AND THAT’S OKAY! For my son, I am thrilled if he smiles. Other people are thrilled if their child gets through a day without needing to be suctioned. These are our superstars!! Thank you for sharing!!
Hi all super moms and super dads,
I’m mother of a 14 yrs old down syndromed boy residing in Canada now. But I have a little different story than you. Though I never measured wheather my son was a superstar or not, but he could speak, sing, read and write upto a level, very much competent in working on computer and iPad, behaved like a boy without any differentialitiaties and studied in a mainstream school. But when he was 8 yrs old, he lost his maternal grandfather who was his best friend. After his death, my son could not sleep for atleast three months, became restless, went under medication and finally lost his speech. We were in our home country then and tried everything we could do to get back his vocal but failed. Finally, we moved here as a last try. Now, he studies in a special school here and under CHEO’s downsyndrome clinic’s supervision but still he doesn’t speak on his own. I don’t want my son to be a superstar, but I only want my son again call us mom and dad, sing and rhyme with us, be active, smiling and spontaneous like before and atleast enjoys his life by being independent. Please keep us and our only child in your prayers. Love to all the children of the world with different abilities and their blessed parents and thanks to all who are anyhow working with special need children.
Diddo!!!!!
Thank you so much for writing this article! It is very honest and genuine and something I have felt since my daughter was old enough for me to realize she is a typical Ds person also. She is enough for us and our family. The community we live in is very competitive and always trying to turn kids with Ds into something they’re not. Always looking down on those who don’t live up to their expectations. Which is why we choose to keep to ourselves-until we can move somewhere else where she might be more accepted. I just never knew there were “cliques” for disabled people too….:(
Thank you so much for articulating this. My sons ate now 28 and 30 and are also not superstars. They care well loved, accepted in our community and happy. I watched a couple of those superstar programs on TV, but they were too painful to watch. In one case, we met one of the actors on one of the programs and she was definitely not as high functioning as what was depicted on the program. My “kids” are great and they don’t have to be superstars.