"He understands a lot!" the woman says to me.
"Oh, yes, he does," I agree.
Dave and I are talking with a potential babysitter for weekends, and she's just met Max. I'm always taken aback by how surprised people are by Max's intelligence. Intellectual disability is relative; Max has plenty of smarts though to be sure, I didn't totally get that during his early years. Until you know someone with intellectual disability, your perspective can be colored by preconceived notions and outdated stereotypes.
When Max was a tot, what I most noticed was what he was lacking. He wasn't walking. He wasn't saying sounds or, for the longest time, words. He couldn't grasp or pick up a ball. He couldn't feed himself. Couldn't/wasn't/couldn't/wasn't/couldn't/wasn't, went the soundtrack in my head. Doctors, specialists and society in general are laser-focused on milestones. And when your child isn't just behind but bypassing them, it's pretty much all a parent can think about.
As time went on, I learned to understand Max's intellectual and physical abilities. To focus on what he could do, rather than what he couldn't. To appreciate his unique mindset and strengths—his incredible emotional intelligence and intuition, his social skills and charm, his excellent navigational skills that rival any GPS.
"I can see the brightness in his eyes," a doctor told Dave and me when Max got a stem cell transfusion almost 12 years ago. And it's always been true.
March is Developmental Disability Awareness Month. It's also Cerebral Palsy Awareness Month (though not everyone with CP has ID). And I'm celebrating them in honor of my Max, who at 19 years old is full of intellectual ability. There is a tremendous range of smarts and brightness in this world, and people with intellectual disability aren't on the "low" end—they have their own unique intellect. And who are the rest of us to judge?
So what if standard test scores say differently—they are no reflection of a person's reality, as standard test takers of every ability know. So what if Max is not a person who does Wordle or reads the newspaper. So what if he thinks he is going to someday live in a Los Angeles fire department when he gets older; that boy can dream big. So what if he is not in college; he is acing the school of LIFE.
Max isn't just aware, he is ON it, some days more than Dave or I am.
"Russia is bad," he said to me a few weeks ago. He'd been down in the basement, aka the Max cave, watching the news.
Max knows.
"I have a half day of school on Friday!" Max texts.
Oopsie, forgot about that—but Max knows.
"Why are you mad at Daddy?" Max asks when he reads a ticked-off text I've sent Dave.
Max knows.
"I didn't take my medicine yet!" Max informs me at 9:15 p.m.
Max knows.
"We have to turn the clock back!" he tells me on daylight savings time weekend.
Max knows.
"Homework!" Max reminds me.
Max knows.
Ben is grouchy and could use a kiss.
Max. Knows.
Max is full of confidence and smarts, and he knows it. He is a person with intellectual disability as defined by the so-called norms. And he is a person with intellectual abilities as defined by anyone in their right mind.
If only more people could see it.
Max is super smart. Anyone who has followed your blog knows that. I will admit to sometimes being jealous of his abilities. While my Luke (also 19!) doesn't have a diagnosis of an intellectual disability, it sometimes (often?!) appears that he does due to his struggles with expressive language. He hears and understands everything. And he (and Max!) will continue to learn and lead great lives.
ReplyDeleteYour continued strength-based approach and love for Max is infectious and inspiring. He does sound like an amazing kid from all that you've shared through your blog. And very happy to see an update from you about Max and your family again!
ReplyDeleteLove this❤️❤️❤️❤️❤️ Kara knows too! And she says “I have abilities not disabilities”👍😊
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