Jake's Journey with Apraxia

And the Friends We Met Along the Way

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.

Lisa and her son Tanner

Lisa and her son Tanner

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.

Tanner as a baby - www.jakes-journey-apraxia.com

Baby Tanner

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.

2011 - Tanner with his first ribbon for competitive speaking on the high school debate team - www.jakes-journey-apraxia.com

2011 – Tanner with his first ribbon for competitive speaking on the high school debate team.

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.

Tanner, 18 years old - www.jakes-journey-apraxia.com

Tanner, 18 years old

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.

Tanner and his mom Lisa at his high school graduation this week - www.jakes-journey-apraxia

Tanner and his mom Lisa at his high school graduation this week. Goooo Tanner!

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. 

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14 thoughts on “Letter To Me in 1999 From Me In 2015

  1. Christine says:

    Thank you for sharing such an amazing and inspirIng story!

  2. Carol says:

    Sooooooo wonderful to read!!! Tanner has a great mom!!

  3. Tara says:

    You have NO idea how much I needed this letter …. This is me and my 5-year-old son. The countless hours of therapy, IEP meetings, tears, anger, more IEP meetings, being told over and over again what he CAN’T or WON’T be able to do … It’s a mountain of depression most days. On top of the fears about having no friends, etc. You hit everything on the head. Thank you from the bottom of my heart for sharing ….This post hit so incredibly close to home. Thank you for giving me a reason to feel hope today … Thank you … Thank you … THANK YOU!

  4. Kelly Pinkham says:

    I love this article!!! 👍

    Sent from my iPhone

    >

  5. Thank you for writing this I needed to hear it!

  6. Margarita Yerk says:

    Thank you Lisa for sharing this wonderful letter. Some grandmas need to hear there is hope!

  7. kaitlynclair says:

    Thank you. I am weepy reading this because it speaks so close to me and where my family is. You have truly offered so much hope when it is a challenge every day to remind myself that my son (who is 2 1/2) will grow into the strong, confident adult you describe as your son now! Thanks for sharing a your personal journey.

  8. Lori O'Meara says:

    Thank you for sharing your story!! My 3 1/2 year old daughter was diagnosed with apraxia last year and is currently making amazing strides through preschool and her various therapies. Your story gives me hope for her future and all the things I think she can and will accomplish!!

  9. Andrea says:

    I never even heard of Apraxia until reading this. My first son was speaking sentences by age one and a half. Said his first word at four months. So when I had my second child and he didn’t say anything even though he was nearing age one, I asked the pedestrian if something is wrong. I was told some kids start talking later than others, not to worry. He still wasn’t talking at two years old. I was young, believed the pedestrian but in the back of my mind, something was definitely wrong. He should be able to say something. I was 22 at that time and it was 22 years ago. My cousin who was older than me and had five kids told me the same thing, nothing was wrong. I said that something has to be. She told me that because I know what he wants when he points at something or whatever the case was, he doesn’t have to talk. I’m like okay, what ever. That’s just stupid. Something is wrong and I don’t know what to do. She told me to stop talking for him and he will start talking. I asked what she meant. She said that I know what he wants or even wants to say and talk for him. I told her she was crazy. He came walking in and as always I asked him if he wanted juice and he shook his head yes. She said, “see now why should he talk when he got you to do it for him”, I said she was crazy again because I didn’t talk for him. She said that he got you to get him juice with out saying anything. I asked her what she meant and she told me to let him tell you what he wants or maybe put the juice where he can see it and tell him to tell you what he wants. Stop asking him if he wants juice, or if he wants this or that. Because you he is your second child you already know what he needs and basically when you get it right he agree with you. After about a week I was shocked to see she was right when I told been acting stupid as much as possible to get him to say what he wants. He was becoming very frustrated with me holding a bottle, which he wanted and I was acting like I didn’t know what he wants when he blurted out that he wanted his bobble. I laughed, could not believe it. Soon after he was talking. He was almost three years old and far from his brother at that age with talking. That’s the only thing he was slow in doing. I think that knowing that a child could have said condition because it does exist, I should have been at the least given some warning of the possibility, and made aware of steps I can take at that time in case he did end up with that after all. I say to you parents who have been through something like this to share your stories because that’s the best knowledge and advice you can get is from the many before you.

  10. Andrea says:

    I spelled pediatrician wrong, sorry

  11. Kelly says:

    Thank you so much for this.

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