Click here to watch the TEDTalk that inspired this post.
In the TEDTalk My Autistic Brothers, Faith Jegede shares with us her experiences growing up with two brothers who have autism, one who does not speak with words, but with his heart, and her other brother who has a brilliant memory.
Faith explains how her brothers' differences became more apparent as they grew older. However, she has been able to look beyond their growing gap of differences and challenges to see the unique and extraordinary gifts inherent within both of her brothers.
Just yesterday, I talked to a group of genetic medical students about what it is like to have a child with Down syndrome. I applaud the genetics professor for giving these students an opportunity to look beyond black and white test results, and consider the unique person within.
I began my portion of the discussion with the students by describing the moment I received my son's suspected diagnosis of Down syndrome, which was almost immediately after his birth. The results of a genetic test would take 72 hours, but all physical indicators confirmed our suspicions, so that when the test results did come in, they only proved what we already knew.
I would guess every parent who has a child with special needs remembers that time of the initial diagnosis. It is a life changer for almost every parent, and, for me, it was a time of grief and loss of the expectations of a "normal" son and also ripe with the fear of the unknown.
The oval shape of my son's eyes was the first thing that confirmed the truth to me, that my son did in fact have Down syndrome. But, his eyes were a contradiction to me at the time. What confirmed the news of such sadness also revealed such love. I wanted to know him, love him and be the best mother I could be to him. Over seven years later, I am still swept away by the beauty and depth of his eyes.
It is true that there are many challenges in living with a disability, and the gap between my son and his peers does grow every, single year. My son has hypothyroidism, low muscle tone and cognitive delays. He needs lots of movement and exercise to stay at a healthy weight and build his muscle strength. He also works with therapists on his fine motor skills and his speech.
The state of his thyroid and the results of his therapeutic work can easily be measured in tests. It gives us a benchmark, a place to work from on setting new goals. Yet, even though this is an important part of our life with my son, it is not the whole of it.
What can't be measured in a test is the deep feeling of joy and pride when my son achieves a hard earned milestone. What can't be measured in a test is how his slower pace and friendly, forgiving attitude has taught me to be a kinder and more compassionate person. What can't be measured in a test is how he will start singing a song in a store, and all of a sudden people are laughing and smiling with one another. What can't be measured in a test is how he has an uncontrollable giggle that can brighten the darkest mood. The list goes on. My son is not Down syndrome, he is a boy full of his own unique gifts and talents, who also happens to have Down syndrome.
I told these students that many parents will be blinded by the test results as I once was. It will be hard for them to look beyond the list of challenges at first, and see the whole of the child within.
As geneticists, if they truly wish to serve their clients in the best way possible, it will be to always remember the human component. Tests are essential but so are the countless things that can't be measured.
What is measurable about all of us is just a small part of our whole being. We all have innate gifts and talents, no matter our challenges and differences. We are all different, and, in so being, we are all extraordinary.
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