Of Bare Feet, Down Syndrome, Chuck Taylors, and Oral-Motor Exercises

When you parent a child with special needs – Down syndrome, cerebral palsy, or something else altogether – there’s a constant tension between your gut and what the professionals tell you. Your head tells you one thing, while the doctor or the therapist may tell you something else. If that wasn’t difficult enough, sometimes your head doesn’t give you a clear signal, and neither do the professionals.

Nathan took his first awkward, lurching steps back in August. He had just turned seventeen months old, and in my heart of hearts I really wanted him to walk independently at eighteen months – I didn’t care if it was one day shy of nineteen months as long as I could say he walked at eighteen months.

He didn’t.

Nineteen months came and went. Twenty months came and went.

Each time his physical therapist visited the house, she expected him to be walking, but he never was. Although Sarah Kate’s physical therapist doesn’t treat Nathan, she does see him each week when we go into the office and she pointed out some things to try with him, thinking he was close to walking.

He still didn’t walk.

A few weeks ago, Sarah Kate’s PT suggested that I buy Nathan some hightop shoes – the updated version of the stiff, white, classic Stride Rite shoe that all the kids of my generation wore. I contemplated her suggestion – Nathan’s early intervention PT had told me she wanted him to learn to walk barefoot.

What to do?

Barefoot and Stride Rite high tops are mutually exclusive.

While Mr. Andi and I were out buying our new fire pit on Black Friday morning, I decided to check the store for toddler hightop athletic shoes. They had two styles – a “hiking” boot and a black Chuck Taylor Converse sneaker. I tried the sneakers on him – over his zip-up footy pajamas, as a matter of fact, as we hadn’t bothered to dress him for our quick trip to Academy Sports – and decided the fit and price were right.

I reasoned that the shoes were heavier than what he’d been wearing – Robees or nothing – but he wouldn’t have as much as support in the ankles like the Stride Rite shoes. I figured the Chuck Taylors were a good compromise, but simultaneously wondered if it was actually just me being noncommittal (and therefore not helping him at all).

At the same time I was struggling with whether or not to put Nathan in more supportive shoes, another therapist was working with him on some oral-motor exercises for speech. One day after she left, I decided to go online and see if I could find a printable sheet with symbols or other information to help me remember what to do with him when she wasn’t there (the therapists with early intervention are required to take copious notes for the state, which is very unhelpful to the parent who has to wade through all of the language about what we did on X day and what I told the therapist about what he had been doing since her last visit).

I didn’t find what I was searching for.

In fact, Google told me that oral-motor exercises are a waste of time for developing speech. Well, crap. No, I don’t believe everything I read on the internet, but these sites looked legit. So twice in the same month, I’ve had opposing camps giving me contradictory information about what to do with my child.

As if I didn’t have enough to worry about already.

In some ways, therapy was easier with Sarah Kate. Actually, scratch that. It wasn’t easier, but it was simpler. It was more clear-cut. She had one main thing that she had to work on (gross motor skills), and even if she did too much therapy, it was largely strengthening exercises, which never hurt anybody. Her prognosis may not have been clear, but we knew what was wrong with her and what we needed to focus on.

With Nathan, it’s much trickier. With everything just a little bit delayed (and most not delayed at all), it’s hard to decide where to put my focus. It’s hard to know what activities are really worth it from day to day. And it’s very hard to shake the guilt if you don’t do all of it.

But you know what? It’s okay. This week, my boy started walking – really walking, by his choice, without prodding, begging, or pleading, and it’s just a matter of time before he’ll be running. He’s able to seek and destroy more quickly now, but that’s okay. I’ll just keep plodding along, doing the best that I can, and enjoy the milestones as they come – no matter how they come to be.

And one day very soon, I’m going to have a child who is able to run – something I’ve never had before.