When you have a child with an intellectual disability the tests come early and often. Medical tests, intervention tests, IQ tests.
IQ tests are the worst. On the parents. I’ll never forget Marcus’ first IQ test, he was three. He communicated mostly with action/expression and sign language. But not that day, well I take it back. He was clearly communicating, just not compliant. An important differentiation that, as his mother, I could see but the Ph.D. in the room clearly could not, Or did not.
One moment that stood out, the psychiatrist held before Marcus a doll with its head off, laying in her hand next to its body. She held the decapitated doll and asked, “What’s wrong with this?”
Oh! Let me count the ways! I thought. “What are you trying to achieve here?” I asked.
“It’s a standard question,” she defended.
“Great. Some doctor in DC is popping heads off of dolls and that’s supposed to hold some bearing on my son’s intelligence score which is, (worse) the primary driver of his school placement. Really? Great.” Did I say this? Not sure. Maybe. I feel like I did. I feel like I can still see the look of horror on her face at, well, me.
Marcus did not say any words or signs to the psychiatrist the whole time she was there. All the while his home-school teacher assuring her that he knew and commonly used several words. Ah well…
Actually, he did say one word, as she was leaving out the door, he said quite clearly: “Bye!” (I couldn’t have been more proud of him at that moment.)
If an IQ test is graded by “pass or fail.” By her numbers, he failed.
Years went by testing continued and I continued to fight that my son is not a number and his education should not be affected by that said number. Nor should he be respected differently by said number. Now that he is an adult, sometimes people ask me about his IQ or worse, his “mental age.” First off: Please, don’t do this. But that post is for another day.
Today my point is, we are all a conglomerate of numbers across a spectrum, a complex equation of friends, risks, activity, accomplishments, challenges, hopes, fears, ambitions, and impact. And infinitely more. No one can be summed up with one number.
I tried, and failed miserably, at making an infographic. SO – in place of that, enjoy this list of the Marcus Equation:SOME - but not the sum - of the Marcus equation Click To Tweet
SOME – but Not the Sum – of the Marcus Equation
- 47 Chromosomes Marcus has a chromosomal condition commonly called Down syndrome; In his case, this means he has a triplicate of the 21st chromosome in every cell of his body.
- 1200 Over 1200 people Listened to (and cheered on) Marcus’ heartfelt speech as 2017 Ambassador for the Global Down Syndrome Foundation at a star-studded fashion show event.
- 321 Spoke at the United Nations on World Down Syndrome Day, 3-21-17, before delegates and advocates from around the world in the UN Building and also via webcam around the world.
- One Published Book (so far) Marcus is the storyteller behind the children’s story book, Black Day: The Monster Rock Band.
- 16 US States “toured” in where Marcus has shared his book, his animated short, answered questions, and touched lives in schools, bookstores, music stores, coffee shops and with news outlets around the country.
- 10+ Over Ten Countries Number have at least one home with the book Black Day: The Monster Rock Band, that I know for certain, so far, including, USA, Canada, Mexico, France, Australia, Albania, England, Scotland, Ireland, India…
- 3900 YouTube Views (so far) of the trailer to his book/animated short, Black Day: The Monster Rock Band.
- 100 100% Likelihood that Marcus already has the plaque and strings on his brain that are the pathology of Alzheimer’s disease. – 50 50% likelihood of dementia or other ill effects of Alzheimer’s by the time he is 50. – One of the many reasons we support the work, research, and medical advocacy of the Global Down Syndrome Foundation.
- Twice he’s been featured as Front Cover News
- Once Cover model shoot and featured
bio story in Down Syndrome World Magazine.
Zero The relevance of an IQ# on humanity
Countless Friends from around the world who are touched by Marcus’ ambition and creativity.
I also liked the time he sang Christmas carols in the car before his school Christmas show, did not sing at all during the show, and then sang loudly the minute he got backstage after the show.
It’s true! He’s a rebel.
I’m loving how you did this post. What IS it about those test days? The first official evaluation Tucker had (he must have been about two and 1/2, he was completely non-compliant. I went between telling them that he does know x, y,, and z…and trying to not cry at the whole humiliating situation. I’ve gotten a lot braver over the years and now trust what I know more than what the evaluations and numbers say. Still, it’s hard. UGH to the whole “mental age.” WTH does that even mean? We are who we are, and how we see the world is beautiful. I am so glad to know you and Marcus.
Momma, You DO know. Trust what you know, it’s the truth.
BTW – the book and a sticker are in Germany. Make that 11+ countries!
That’s right! You have photo proof! 🙂