When you have a child with visible disabilities, you get a lot of questions. Most of them kind and curious, and of course the few that you wish you could unhear. Of all the questions I’ve been asked, one in particular sticks with me: “Is the hardest thing that he can’t speak to you?”
I felt that. I still do. That’s a tough one to answer. Because, no, my amazing ten-year-old boy doesn’t speak to me and yes, that is in fact hard. But is it has hard as seizures or 6-hour IEP meetings or knowing that your child’s genetic syndrome may never have a diagnosis? It depends on the day. Our son is amazing. I hope I’m doing him justice as a parent caregiver. So, I’m always considering his future and what goals will bring him to that future. Speech would get us there faster, for sure. But, is speech the ultimate goal?
From an early age, our son was in speech therapy. Other therapies as well. His disabilities presented early, and all of his evaluations detailed marked delays. Would he ever speak? I decided to put a stake in the ground there: YES, he will speak. And that guided the therapies, which in turn guided the entry into school and beyond. Because he doesn’t have an overall diagnosis, we have no roadmap. At first I thought it was my job to create the roadmap. So, I set to work on that right away.
Is Speaking the Ultimate Goal for Nonspeaking Kids?
by Kelley Coleman
What exactly was I working on? Failing, mostly. The lack of vocalizations was complicated by the fact that he had had a feeding tube placed at three months, so his mouth wasn’t in practice with much of the typical motor function, so there was a lot of detective work in figuring out the best way to draw the map.
Many practitioners told us that we couldn’t know how to teach him because of his lack of a diagnosis. But, what I’ve come to learn is that many practitioners aren’t trained in teaching complex communicators, like my son. They’re great at what they do. Unfortunately, what most folks don’t do is figure out how to get a kid do even want to communicate.
We started with PECS. I made an adorable notebook with lots of Velcro (I love Velcro). That never took. We made many attempts at feeding therapy, only to lead to a 10-year-old who is perfectly happy to get all of his food through a tube. We’ve tried more traditional speech therapy, through the school, with private practitioners, and with his wonderfully chatty brother. We finally found our way to AAC (Alternative and Augmentative Communication, ie: a program on a tablet), after many uphill battles of convincing team members and insurance companies that our son was indeed capable of communication.
When a child doesn’t have verbal speech, they’re discounted. A lot. As parents, it’s our job to not be the ones discounting our children. Even as my son gained gestures, some signs, vocalizations, and some very emphatic pointing, he continued to get discounted. Complex communicators get that a lot. But, are we discounting the person or ability to teach that person? What if our kids can be taught, and we don’t yet know how?
So much for my journey to find answers. The questions just keep coming. And I keep coming back to my friend who asked me,
“Is the hardest thing that he can’t speak to you?”
Early in our journey, I would have imagined that the answer to that question would be a resounding yes. But now I’ve reframed that question entirely. Because it turns out it’s not actually my job to draw the roadmap for my son. That’s his job. I just get to drive the car. Because he’s ten, and no one wants to hand the keys over to a 10-year-old. He does, however, get to navigate.
I’ve realized that the question should never be about speech. It should be about communication. What if he had never gone to “speech therapy,” but instead had spent all these years going to “communication therapy”? What if someone had told me early on that all behavior is communication?
My son does speak to me. Not always with words. He taps his lap to call the dog. Signs “music” every time we get into the car. He puts his hands on his cheeks to make the “oh no” face like the kid in Home Alone. And, in under a year, he has gone from zero AAC proficiency to being able to say things like “sit eat” and “want different movie” and “hug brother please.”
When he’s frustrated, we hand him his device, and he names his feelings (“sad,” “frustrated,” overwhelmed,” “tired”). His communication is complex for sure. But, it’s a pleasure for him. And finally, he wants to communicate. He wants to not be discounted. He wants to be taught.
While we’ve finally found someone with the experience to teach him AAC in a way that is accessible to him, we’ve found that he’s the one teaching us every day. I had thought for so long that speech was the ultimate goal. But it turns out I was wrong. The ultimate goal is communication – in whatever form best suits our rather son. Many things are complex about our little man. Loving him never is. Especially now that he can tell us “mom go away want dad hug.” I’ll happily go away and wait my turn for that hug. When he’s ready. Everything when he’s ready.
Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports
by Kelley Coleman
The honest, relatable, actionable roadmap to the practicalities of parenting a disabled child, featuring personal stories, expert interviews, and the foundational information parents need to know about topics including diagnosis, school, doctors, insurance, financial planning, disability rights, and what life looks like as a parent caregiver.
For parents of disabled children, navigating the systems, services, and supports is a daunting, and often overwhelming, task. No one explains to parents how to figure out the complex medical, educational, and social service systems essential to their child’s success. Over and over, parents are being asked to reinvent the exact same wheels.
According to the CDC, “Every 4 ½ minutes a baby is born with a birth defect in the United States.” That’s 1 in 33. There’s no handbook for how to do this. Until now.
Presented with empathy and humor, Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports gives parents the tools to conquer the stuff, so that they can spend less time filling out forms, and more time loving their children exactly as they are. With over a decade of experience navigating these systems for her own child, author Kelley Coleman presents key information, templates, and wisdom alongside practical advice from over 40 experts, covering topics such as diagnosis, working with your medical team, insurance, financial planning, disability rights and advocacy, and individualized education plans. Everything No One Tells You About Parenting a Disabled Child gives parents the tools they need to stop wasting unnecessary time, money, and stress. If you need to know how to actually do the things, this book is for you.