Friday, December 30, 2011


"What, if anything, was there to be sad about? Was every life meant to include a certain IQ score, physical prowess, perfect sight and hearing?
I realized that I had always assumed it was very sad to have a child with mental retardation, or, for that matter, to be a person with mental retardation. But why? Why was that sad - because our culture held the intellect in such high regard? Because life was only as valuable as what we could produce or what academic degrees we had attained or how attractive we were or how big our house was? What was sad about having a child with Down syndrome?" (pg. 97)

This subject is touchy. Touchy because talking about your own feelings about your child having an intellectual disability, if anything other than a "but we love him anyway" report, is taboo.

When we got Dean's diagnosis, one of the characteristics that doctors seemed to be overly eager to tell me about was mental retardation... that mild to moderate retardation was likely, that there was a *slight* possibility of "normal" intelligence with learning disabilities.... I was crushed. So very sad.

I wasn't any less proud of Dean or proud to be his mama, but I was sad that the world would likely look down on him. Even as a newborn who could barely move or stay awake, Dean felt like a very old soul. I could tell that he knew things - about us, the world, God - that the rest of us would be too blinded by our intelligence to see.

I didn't want others to miss it, too.

I told myself that even Jesus was misunderstood and He sure turned out all right. I told myself that there would be many who would see the boundless LOVE that Dean had to offer and they would be touched by that instead. I told myself that I didn't care if he had a lower IQ because all that mattered was he was my son.

All these things were true. And yet I was still kind of sad. And sometimes still am. BUT. WHY?

I too wrestled with this question the way Amy Julia described above in her book. I still do. And trust me, I *know* that Dean's worth in the eternal scheme has pretty much ZERO - nothing - to do with his intelligence, that the ability of God to work in Dean's life is not bound by a number that falls within a standard deviation or two on an IQ curve.

It's hard, I think, because I want Dean's life to be easy. Or at least easiER. But the life of someone with Prader-Willi syndrome by definition is not easy. And really, *no one*'s life is easy. I didn't want any extra disadvantages to be counted against Dean because I just love him too darn much. (Spend 5 minutes with him, you will, too. He's a wonderful little human being - see, you got me crying! :))

I don't know what Dean's intelligence is ultimately going to be like. And by "intelligence," I mean book smarts, IQ, smarts the way the world defines it. Dr. Miller said that with early intervention and starting growth hormone before the age of 1, people with PWS in that category have an average intelligence of 95 (average for the general population is 100). That sounds great! But if not, well, that's too bad. He might not have book smarts, but he WILL have love smarts. The kid knows how to love in a way that can't be taught. He was born with it. :)

This post is the second in a series about the book, A Good and Perfect Gift. The first post is HERE.


Giulia said...

I can relate. Despite being considered as -so called- gifted (I could read on my medical file "IQ : 140" But this number doesn't summarize me, I am not only an IQ, I am what I am, with what I like and dislike, what I am able to do and unable to do, what I can build).

But what I notice is that when you are in the extremes (gifted or with an intellectual disability, the extreme poles of learning difficulties), you are looked from some people like "socially, you are not deserving enough".

Mom was so sad when she learnt that I have a Single Sided Deafness (prelingual) + ADHD + Maths Learning Disability + sensory issues.
My SSD was diagnosed at 14 yo, I was barely a teenager. ADHD and the rest was diagnosed 9 years later.
But she realized then that SSD or not, I am still her daughter, that this diagnosis doesn't have to dictate me to give up languages I love (French is my mother tongue), it doesn't have to prevent me from being an "unreasonable person" who wants to make the world change.

My psychiatrist didn't stop telling that if mom were a better mom, I wouldn't have been suicidal after her group therapy (let make me understand her way of reasoning !).
She could be considered as intelligent, that "she knows because she is a psychiatrist", but actually, she doesn't know.
She (the psychiatrist) was laughing when, in the waiting room, I was trying to comfort a patient who just had received a diagnosis of ADHD and thought that her life was over, in shock from being considered as mentally ill : "It would have been better if you were in an association, because alone, you can't do nothing in your life".
Her soul is so blind that I don't consider her as intelligent. She can have a 200 IQ, a Ph.D if she wants, she sees people only from their social worth, she considers that her patients have to be socially worthy to deserve to be cared.

She doesn't have the intelligence to be a doctor.
Oh, yes, she has the technical intelligence, the intelligence to learn technical facts.
But she has no intelligence to care her patients, to love her patients as she loves herself.
To consider them as human beings, persons, not only an IQ, a condition, a social worth....

On the other hand, my ENT doctor, who put me a BAHA hearing aid to hear better, the doctor who has never ever give up even in the odds.
This guy who taught me so much about how can I live better with my SSD, when shall I worry about an infection around the BAHA screw, who told me : "You've become a professional".
Hell, no, you are the maestro and I learnt it from you :D

My GP, a "simple" GP, the first to suspect my ADHD when I was 2,5 yo (but in France, having a diagnosis of ADHD is currently very hard, let say in the 1990's !!), who taught me about voicing my concerns, who recognized when she made a serious mistake which could have led to heart failure if I didn't do anything by myself (a pericarditis which was tricky to diagnose : I wouldn't have taken aspirin by myself and went to bed also by myself, it would have led to heart failure. I was 23yo at this time), who never gives up until the right interventions are in place, who manages her "challenging patients" firmly and kindly to make them sweet sheeps : in a few words, she loves her patients like herself.
And she deserves much more than she has now....

Matt said...

As I continue my post-Christmas-Ali's-blog catch-up, I'm especially thankful for this post. I appreciate your reflections particularly because there's so much "taboo" about talking about the things you mention in this post. So thanks for trusting your us, your readers, enough to give us a further glimpse into your love for Dean and all the messiness of it all.

Since you mentioned Jesus in this passage, I was reminded of Luke 2:52, which sums up ages ~5-30 of Jesus in one sentence: "And Jesus grew in wisdom and stature, and in favor with God and man." (NIV) Nowhere in there does it refer to "intelligence" in the IQ sense that we think about it today.

Instead, I know even just from our short visit to VA last summer w/ you guys, I could easily see how Dean had so beautifully "grown in wisdom and stature, and in favor with God and man" in his own unique way, just like the God who loves him and made him! :)

Ali Foley Shenk said...

Thanks, Matt!