Jake's Journey with Apraxia

by Lisa Geng, President of Cherab and Co-Author of “The Late Talker” book

I wish I could even speak to you for just a minute to say “It’s going to be OK” and to give you a glimpse of the future for your child you are so worried about. Right now you are feeling overwhelmed as Tanner was recently diagnosed with oral and verbal apraxia, hypotonia, sensory processing disorder, and dysarthria by SLPs, a pediatric neurologist, and a developmental pediatrician.

You’re still processing the meaning of what the SLP meant when you jokingly asked her if he’ll ever talk, and she seriously answered after a long pause, “Well, it depends.” You’re wondering how it’s possible to have a child in speech and other therapies six days a week and progress is still so pitifully slow. Your heart breaks each time a stranger asks “What’s wrong with him?”

You are trying to learn about speech, motor planning impairments, neurology, special needs, special education, and special education law, all while you are still trying to get a handle on general parenting. And even on a good day, not knowing who, if any of your friends, will understand if you called them to brag that he just said “mama” for the first time at 3 years old when their children of the same age are discussing the plot of Toy Story 2.

I want you to know there is hope, and that maybe all he is going through right now will even make him a better person in the future.

Early on don’t let anything negative a professional says make you give up your belief in your son no matter who they are. Nobody knows your son like you do. Like when he is testing for kindergarten and the school professionals tell you that Tanner will never make it in a mainstream kindergarten class and instead needs to be schooled in a self-contained learning disabled placement. Advocate for them to give your son the benefit of the doubt and have him mainstreamed for kindergarten. His teacher will end up saying, “He didn’t just make it, he was one of the top students in my class.”

He proved anyone who didn’t believe in him wrong, and because you advocated for him, you provided him that opportunity to do so.

Take him to as many private professionals as you can afford, who can help you make sure that he gets and stays in the mainstream in school. Get him tested formally, privately, outside the school as well. Not just for the school, but for Tanner. Show him on paper how smart he is, and find other ways to keep his self-esteem up as he’s learning to talk.

Don’t confuse not being able to talk with not being able to think. Apraxia is a motor planning impairment, so sometimes you can say or do something, and sometimes the more you want to say or do it again, you can’t.

You will learn once your son starts to talk that he’s thinking all the time right now. He can’t stand not being able to talk, it really frustrates him so much. Please let him know that you and his therapists are helping him learn to talk, and that one day he will. He is listening to everything you say, and I know this because he told me. When he’s frustrated tell him to think about the future when he can tell you everything he wants, can sing any song he wants. That will make him smile. And if there is something he wants to tell you and he can’t use an alternative means of communication to let you know either, let him know to remember it “really hard” so that when he learns to talk he can tell you what it is. You know what an amazing memory kids with apraxia typically have.

Once he learns to talk Tanner will tell you he is happy you have shared his journey online from when he was first diagnosed, and wants to continue to help others. On the other hand, he doesn’t want anyone to look at him a “special needs” because of his apraxia diagnosis, and wants to show that apraxia can’t stop him from doing anything he wants to do even if sometimes it can get in the way a bit.

For example, it was his idea to join the high school debate team and he’s loved it even if he doesn’t always get an award in competition. He works really hard to improve his public speaking skills. I’ve heard from both of his debate teachers who have graded him with As, that he is an inspiration to them and the other students.

Communication didn’t start with words. When Tanner was still 2 years old his SLP taught him simple sign language, as up till almost 3 years old his only real word was “ma” but mostly the sound “mmm” was used for everything. And remember when he had a cold around 3 years old and after you gave him some of his cold medicine he looked up and tapped all his fingers together as he looked at you which meant “more”. His first real ability to communicate with you was to ask for more cold medicine. I know how frustrating it was that you couldn’t give him more, but how you were able to explain to him you understood what he was asking, and why he couldn’t have more.

I want you to know that simple sign language ended up really sticking with Tanner even though he’s become an eloquent speaker. Apparently he remembers “talking with his hands” and he loves his sign language class where he’s graduating with honors from a college level 3 class he was selected for. Apparently even though you only taught him simple sign, he picked up ASL as if it’s second nature to him.

Tanner believes both debate and sign language will help him in his future goals, which is to become a special education attorney so that he can help other children like him who have apraxia or other impairments.

I know you worry he’s not going to have friends, or is going to be teased. Tanner’s always had friends, don’t worry about that. You are going to research how to help Tanner not be a target for bullies and it’s going to work. Also after reading the research which supports not starting kindergarten until 6 years old when there is a delay in any area, you advocate to keep Tanner in preschool through his IEP till he turns 6, which provided that extra year of therapy and developmental time. Perhaps too he’s not teased because he’s always one of the larger kids in his class.

Speaking of which, Tanner is 6 foot 5 inches tall now.

You wonder about his future ability to ever drive with his motor planning impairment. He had no trouble at all learning to drive a car, or a boat, or a jetski. In fact he’s even going to become an excellent backseat driver once he learns how to drive!

You may be shocked to know that Tanner stays up to date on world events and enjoys discussing it with you and others. He loves football and is going to think about playing it in high school, but after you show him all the research on traumatic brain injuries from that sport, and meeting with his pediatrician, he’s going to choose to just play casually with friends and watch it on TV instead of playing through his school. But he’s going to love to talk about football with his Dad.

Tanner has many interests just like any other teenager. He loves watching Japanese movies with subtitles and has even picked up learning some Japanese. He enjoys video games, hanging out with friends, and court TV shows like Law and Order. Oh and he’s really good at baking brownies, and trying to come up with special recipes on his own. Tanner loves animals so make sure to always have pets for him as that really helps him too. Dogs and other pets don’t care if you have a speech impairment when you give them a hug. Tanner still loves his dogs Simba and Sandy today, and when he got old enough he volunteered at the Humane Society as a cashier.

Today Tanner has a sophisticated vocabulary, I’d say he’s well above average in that regard. Even though his speech may break down still if he’s sick, stressed, or tired, many people today have no idea he was ever special needs. If his speech does break down, he’ll explain it’s just that he has apraxia.

Tanner’s been interviewed a few times and ever since he’s learned to talk, he brings up how it bothers him when people assume he doesn’t know a word when instead it’s that he knows the word he wants to say, but he can’t get it out of his mouth due to his apraxia. He says even though he understands people are just trying to help, it frustrates him. I wish you could speak with him right now, he’ll tell you he’s doing great, and he really is.

After being in a mainstream school placement since kindergarten, your “little guy” is 18 years old and I just watched him graduate from high school where even though he averaged around a 3.5 GPA, this last semester he had a 3.8 GPA. All four years of high school Tanner was in honors classes with no IEP or 504 plan, no accommodations of any sort, and no need for any. I’m so very proud of him.

Funny enough I cried watching him graduate from preschool, but not high school. I no longer have fears for his future.

I wish I could tell you that it’s going to be easy getting to where we are now, but it was a long road. There was over a decade of various therapies, too many IEP meetings, file cabinets full of evaluations and other paperwork from neurologists, therapists, and even a pediatric gastroenterologist.

You will learn that his speech is better after a day of going on rides that have a stronger g force, so in addition to traditional and alternative therapies, you will be driving to theme parks almost every week. You will figure out nutritional strategies that will help like fish oils and IQ’ed which are way easier. You will go outside the box, and some may laugh at you for doing so. You will start support groups and even write a book to share what you learned. And your inspiration is Tanner and his brother Dakota, both of whom were “late talkers” and both who overcame.

Sometime after he learns to talk Tanner is going to tell you and everyone that if it wasn’t for his mom he’d never be where he is today. I know right now none of this seems possible, but just remember to always give your son that benefit of the doubt. We all deserve at least that.

Congratulations Tanner on your recent graduation from high school and thank you Lisa for sharing your journey with Tanner’s apraxia! What an inspiration both of you are! To learn more about Lisa, please click here.