Rocking the Extra Chromosome
Posted on March 21 2019
Written by Abeer Zuberi
On her first day of school six years ago the school bus came to pick up Iman. The bus driver excitedly greeted her, “Good Morning I – MAN (she pronounced it as (AYI-MAN). My daughter smiled and said my name is EE MAN stressing on the E. and she spelt it out for her I-M-A-N.
At four years of age she had the confidence that I didn’t even have. Oh, did I mention that my daughter Iman is gifted with Down syndrome?
Things have changed. Children from all walks of lives are sitting beside each other in the classroom and learning. Iman goes to an inclusive classroom and is learning to read, to do math with her peers and the other children in her classroom are learning very valuable lessons of acceptance, of seeing the ability, of empathy.
But even in 2019, how does the world respond to Down syndrome?
I’ve got comments like, “Is she downs?” “I’m so sorry that your child has down syndrome.” “How high functioning do you thing she will be?” What kind of a narrative do these kind of questions lead to? What are the negative assumptions about Down syndrome?
Iman is not really that different from her typical siblings with 46 chromosomes. But that extra copy of the twenty first chromosome has changed me to the core. For me, Down syndrome is something to celebrate.
Let’s start talking about it differently. It’s not something to label or limit. The words we choose eventually become reality. What are the words we are using? Myself and a few other moms use the word “rocking” because our children rock an extra chromosome. See the person not the disability. Using words like downs focuses on the disability and not the person she is.
A lot of times people ask me how old is she or what grade is she in? I direct the question back to Iman and she is fully capable of answering it. Also if there are questions you or your child would like to ask, please come to us and ask us. We would love to answer that question for you.
Our Islamic schools need to be inclusive. In the beginning I mentioned how the typical children in Iman’s classroom are learning valuable lessons. Just by seeing people with different abilities we recognise or understand how much they are capable of. Why are the children in Islamic schools being denied this? My son has a child with exceptionality in his class. He has learnt that sometimes children use their devises to communicate. He rejoices with every achievement of his peer and excitedly shares them with me.
Support organisations like SMILE Canada, CAM-D and MUHSEN that are trying to raise awareness and helping families with children with disabilities. Supporting such organisations create direct opportunities for children and their families. Iman just attended a handwriting camp over the March Break through SMILE. From when she was very young, SMILE Canada was always there when I needed them. When she was starting Grade one and needed an IEP. I felt like the IEP that was made for her was having very low expectations for her so I approached SMILE and they walked me through it all. They showed me how I could approach the school and make changes to the IEP. My life has definitely become much easier because I had an organisation like SMILE to lean on, to guide me, to tell me about my daughters rights, to advocate.
I would end with a beautiful poem written by Asma Baker. It was read out at the opening ceremony of the special Olympics being held at Abu Dhabi as I write.
We come alive just the same
wWe champion just the same
We face fear
We have hope
We bring joy just the same
Because the human spirit that binds us
We have the human spirit that finds us
That human spirit is woven into all of us
When we stand here together we stand here as one