Down Syndrome: Escaping Limits
5 things a parent should hear first about their child with Down Syndrome
Close to 12 years have passed since my son was born with Down Syndrome. Now, he has accumulated diagnoses over the years, but I can honestly say that my first visit from the NICU doctor in the hospital who told us that our newborn has Trisomy 21 (the official term) shaped my (dis)trust in what future medical experts would tell me over the years.
Here’s what I (and thousands of other parents) should have heard.
1. “I really know nothing about children born with Trisomy 21. So your son could really blossom into quite anybody. You have the world of possibilities open to you.”
Hearing this from your first practitioner could change lives! Knowing (not hoping, but truly knowing) that anything is possible, a scenario a vulnerable parent will trust when it comes from the mouth of a doctor, means that anything will be possible.
Instead, our doctor said that she was sorry and that in some good scenarios, children with Down Syndrome can operate as clerks in department stores. I remember hearing this through a culturally-sanctioned sobbing, and visualizing in my hormonal mind, a child who would grow to be “mentally retarded”, a phrase that popped up in several websites when I googled Down Syndrome.
In a very ironic twist, my son doesn’t really have the motor skills to even count cash, nor the body control to be a grocery clerk, but he was estimating the slope of a linear equation 5 minutes ago and hopefully will be doing calculus in 3–4 years.
2. “Movement is key to integrating primitive reflexes and to brain development and early learning for all kids, but especially kids with issues with muscle tone. Get your child moving as much as you can and in as many ways as you can.”
I would happily exchange those hours he spent in the car seat sleeping or just happy and content, when we visited friends, those hours in his bed where his tone was too low to spontaneously turn, in turn for opportunities involving exploration, complex movement and cross patterns.
3. “Children with Trisomy 21 often experience oxidative stress, altered methylation pathways, and have a high risk for developing Alzheimer’s disease. Try to choose an antioxidant rich anti-inflammatory diet rich in nutrients that optimize brain function. Also keep his/her mind engaged and body moving. There is no reason to expect anything short of the complete health you would expect from your neurotypical child.“
This is very low risk but high in common sense advice and grounded in science. You would think that the first doctor or neurologist or the Down Syndrome “expert” would have mentioned it. Or perhaps they could have simply advised me not to accept mediocre health and to strive for physical excellence because it is not just possible, it is a reality for many.
However, we live in a medical system where preventive efforts through nutrition are not considered mainstream enough to mention despite supporting studies numbering double digits (It is true that many of these intervention based studies are not on children with Down Syndrome. But even if there is hope that good sound nutritional intervention can support health, there is no ethical reason not to mention it).
And so, every expert we met told us that our child’s condition was “just Down Syndrome”, the fact that he couldn’t lift his hands on command, couldn’t speak, couldn’t jump and could barely hold a pen (and continues to struggle with all the above) was either that he “didn’t understand my prompts” or “just Down Syndrome” again. The best I got was: “Not to worry, there are many children worse than him”, implying that this fact — that they had successfully dismissed valid concerns of other such children — should give me some solace.
4. “Not speaking isn’t the same as not thinking.” I wish the many medical professionals and therapists that my son met would look beyond his face to assess his cognition. That they would recognize their bias in assessing looks,motor function and speech as cognitive markers.
It is not socially acceptable to judge intelligence based on how a person looks. This was the legacy of the days of colonization, of slavery and of racism. Those that still practice it likely take great care to hide it. However, discrimination on the basis of disability, especially for Down Syndrome, is the one flaw no one need hide. It is officially sanctioned.
You are allowed to assume the child does not understand you. You are allowed to talk down to the child, and you are allowed to slow down your speech, drop your vowels and sign in rudimentary ASL in front of a child who is perfectly capable of hearing and understanding you. My son suffers this indignity almost every day.
5. “How exciting! Maybe he is going to be a mathematician. Make sure you teach her math.” “Remember to read complex books with her”. Or for an older kid: “Do you teach him chess?” etc.
Honestly, with my abundantly disabled son, I can see that there is a real hugepossibility of that. (And my son actually does learn chess). My son does grade level math. He writes poetry and beautiful prose. It shouldn’t be a surprise to anyone. But I have seen experts roll their eyes, refuse to enter into conversation with him, and worse doubt his abilities in front of him.
We are all ashamed of history where our ancestors have made the shameful crime of assuming that certain races or cultures or castes were unintelligent. No sensible person today would dream of stereotyping a person’s intelligence based on their genetics. Yet, we so easily think it unlikely that a child with a specific disability can do math, or worse can comprehend language, when in reality we have never bothered to see how or even if children learn. And in doing so, we casually seal the fate of the child.
Yes, children with Trisomy 21 can be actors, musicians, models (we sort-of accept that with some difficulty: “Yeah! But that kid is different. My kid can’t really do that stuff.”). But, and be ready for this: they can be astrophysicists, mathematicians and writers too. It’s time to usher in that reality.
“Reality is merely an illusion, albeit a very persistent one.” — Albert Einstein.
All it takes to redefine reality is to change our viewpoint, our assumptions, and to simply but surely and firmly Presume Competence.
