Teach Your Children Well

This post is from Linc’s dad, Sam.

Before I begin, let’s remember the ground rules…

Linc has Down syndrome.

Linc has an extra chromosome. No one knows why this happens, but it happens almost at the moment of conception. There are no environmental factors that we know of that cause this. It just happens.

Linc doesn’t talk yet, at least not effectively. He can communicate fairly well, but more on that later (spoiler alert).

Linc has low muscle tone, which means he is very flexible but also gets tired more easily than his brother and cousins, and that his core strength is weaker than yours.

Linc has cognitive delays. While his brother was speaking in complete sentences at the age of two, Linc just had his fourth birthday and we’re still not really able to communicate effectively with him yet.

Lincoln has had different kinds of therapists all of his life, experts who teach him (and us) how to interact with the world better. They specialize mostly in three categories. Physical Therapy (PT) deals with the big stuff, like walking up hills and climbing stairs or strengthening Linc’s shoulders so he will be able to pull up his own pants one day. Occupational Therapy (OT) deals with the more delicate stuff, like handling a knife and fork or holding a crayon correctly. And Speech Therapy (SLP), which deals not only with language (both spoken and signed) but also eating foods of different textures and learning to control his tongue.

Lincoln goes to public school. He has since the day he turned three years old. We do not yet use private therapists outside of school time (though a lot of kids do at this stage).

Linc is still in diapers (God bless his teachers).

He feeds himself, he plays well with others, he lets you know how he’s feeling, and generally acts like a little kid. Sometimes he’s funny and sometimes he’s annoying.

He’s just like every one else.

But he’s different.

Lincoln’s arc of learning is much longer from other, ‘typical’ children. Last year, I realized I had forgotten this. On New Year’s Day 2010, I made a resolution to teach Nico, Linc’s older brother, to read. He was four at the time. We worked hard, and before he entered Kindergarten this year he had already read the first Harry Potter novel on his own.

As New Year’s Day 2011 approached, I suddenly realized that I had never made a resolution like that for Lincoln. I had never said, “ I will do this for him this year” or “I will teach him (fill in the blank)”. I had never really set a long-term goal for him, outside the ones his therapists had assigned me. And that got me thinking. What was one thing I could be doing better than I had the year before? What was one area that I had neglected as Lincoln’s father?

To my shame I began to realize that I didn’t talk to him.

Liz was great with him. She’d laugh at his grunts and burbles like mom’s do. She’d still get in his face and smile and chatter away with him. But I had stopped.

I don’t know if it was out of a sense of frustration or convenience, but I had begun to interact with Lincoln on his level. We ‘spoke’ through physicality, through hugs and wrist slaps, through modeled behavior and hand signs, but not through language. I didn’t talk to him. I was no longer giving Lincoln anything higher to work towards. I had forgotten that his learning curve is longer than Nico’s, and I had begun treating him as if he would always be where he was developmentally. In my mind, he had plateaued. I had forgotten that sometimes when things move slowly enough, they appear to be standing still.

With Nico, I expected him to do the impossible, and he did it. With Lincoln I realized that I had instead begun to accept where he was developmentally as “just fine”. I had subconsciously started down the path of low expectations. Not surprisingly, Lincoln’s speech hadn’t improved a whole lot over that last year.

Again, I am very ashamed to admit this. But it’s true. To my credit though, I realized my error in parenting and decided to change my behavior and my perception of Lincoln’s development.

So on New Year’s Day 2011, I told myself, “From now on, I will talk to Lincoln just like I talked to Nico when he was at this stage.” Maybe I should have said, “I will teach Lincoln to speak this year,” but I never would have done that with Nico, so it didn’t occur to me. Speaking, as opposed to reading, is a natural skill that humans want to learn through observation, repetition, and trial and error. So over the past ten months, I have tried to engage Lincoln in conversations, talking to him in the car, when we eat breakfast and lunch, about what we see going on around us. Not surprisingly, Lincoln’s speech has improved quite markedly over the same amount of time.

Now, in no way am I trying to claim sole responsibility for this. Linc’s got a team of family members and therapists who are working hard to get him talking, not to mention that he is the one doing most of the actual hard work. But I sure wasn’t helping him out a whole lot myself before, and talking to him now like he understood me sure couldn’t have hurt, right?

He still doesn’t speak clearly yet, but now he definitely has conversations. He is beginning to recognize the turn-taking of conversing, the give and take of speech. He has begun vocalizing clearly for things that he really wants. Sometimes, I swear it sounds like he says, “I want that,” only it sound like he’s got a mouthful of marbles, so you have to interpret.

It’s in there. He wants to speak. It’ll come out. He’ll speak soon. And if we keep expecting him to speak he’ll do it even sooner.

It’s important as parents to recognize when we’ve gotten it wrong so we can change. That’s the only way we can get close to getting it right. The danger with being Lincoln’s parent is that sometimes his progress is so slow and our love for him is so great that it gets easy to get complacent, to just accept him for where he is and not expect him to change or improve.

He deserves better than that. Lincoln deserves parents who expect him to reach for the stars, even if they think he can’t reach them. Because that might be the only way that he ever will.