My 5-year-old son struggles with apraxia, globally, meaning it affects the sequencing and motor planning of everything he does. From speaking to running, reading and writing, Ryder has to work harder than most of his peers, even with several hours of therapy a week. The smallest skill the average person takes for granted, such as throwing a ball or writing his name, requires tremendous thought, planning and sequencing to execute the individual components of the task.
“Childhood apraxia of speech (CAS) is a neurological speech disorder in which children have difficulty planning and programing complex movement sequences underlying speech production.” Individuals with apraxia receive a diagnosis which may rate their deficits from “mild to severe” based upon the intensity of the difficulties exhibited in the areas of planning, production, and intelligibility of speech or lack thereof. “Global apraxia” is a term used to describe difficulty in planning the movement of the limbs of the body when a child also has verbal apraxia.
I am admittedly a research-aholic. Upon learning Ryder has global apraxia, I began my quest to develop a breadth and depth of understanding of the impact this would likely have on him. During one of my countless late nights of Googling sessions, I thought, “There must be an adult out there who has overcome apraxia.” I happened upon Gage Golightly, a young adult with global apraxia. She is an incredibly accomplished actress, a remarkable career choice given her diagnosis.
Gage’s story is uniquely relatable to a parent of a child with severe communication challenges. When you have a small child who is faced with such a large disability, it is hard to imagine a positive outcome for his adult self. Gage has put a face to what success can look like for a child who works relentlessly to overcome their deficits. Gage has moved from episodes of meltdowns due to communication breakdown to episodes of television shows such as “Red Oaks” and “Teen Wolf,” as well as movie roles in “Step Sisters” and “Cabin Fever.”
I reached out to Gage, and much to my excitement, she responded positively and agreed to help campaign on May 14, which is designated as Apraxia Awareness Day. The sheer mass of people who learned about apraxia through her social media efforts that day was moving to both Gage and myself. It was such an overwhelming success that I wanted to tell her story. Gage and her mother, Michele, generously agreed to open up to me.
Do you remember going to speech therapy?
Gage: I do! I remember they had these jars of water and they would hit them and I would have to try to mimic the sound. I very clearly remember the feeling when I couldn’t mimic the sound because the words just weren’t there. It was so frustrating!
What was school like for you?
School was very hard for me. Kids were very mean to me, even in kindergarten. I still used sign language in kindergarten and the other kids could speak. I remember I couldn’t tell them, “Hey, don’t take that from me!” or “I don’t like when you do [whatever].” I would [have meltdowns] even into second and third grade because I was so frustrated that no one understood me. I was never picked to play sports because I was a hot mess. I would flinch every time someone would throw a ball because I knew I couldn’t catch it. I would get picked on since I couldn’t do the monkey bars without falling. I remember that frustration being so real and so upsetting. My mom never babied me though, she was like, “ya know what, kids suck and you’ve got to get over it.” I am also dyslexic, all of my kindergarten work I would write upside down or backwards. Dyslexia affected me greatly when I was in fourth grade and learning cursive. I didn’t know what people were writing. I honestly thought the girls had their own code language and they were writing mean and nasty things about me. And that made me really sad. I just didn’t know it was cursive. I also couldn’t tell time on a clock until about fifth grade, it was just all numbers to me, they were all backwards and meant absolutely nothing. I would hate it when the teacher would call on me, asking me “what time is on the clock?” because I always had to say, “Um, I don’t know.”
Other than writing, what else do you feel like you struggled with academically?
Math was always one of the hardest subjects for me because the numbers would flip themselves around. Even still to this day, I can get a bill and I know what the tip should be, but I have to look at it and count it out on my fingers.
Learning disabilities, such as dyslexia, have a high co-occurrence rate for children with apraxia. Imagine years filled with knowing exactly what you want to say but not being able to produce the words. Then after years of hard work and finally gaining a voice, only to be faced with dyslexia. CAS is truly an invisible disability that has a profound impact upon children and their families. There is no cure for apraxia, but with appropriate therapies, a child can be considered “resolved.”
As a parent, academics and the social component of apraxia are a huge point of stress and worry for me. Did you excel in any areas and how have you overcome the obstacles that you’ve faced?
Reading, believe it or not, I excelled in, in my own time. But if I had to read out loud, that was a nightmare and it still is. I hate reading out loud with a burning passion. Which is so weird because that is a big part of what I do. It’s my job. We always have table reads and I get so nervous, my hands get clammy, I feel like I am going to throw up the whole time. I get so sweaty and nervous because I hate reading out loud. It is just inevitable that I am going to get the words wrong. But I got over it. Now I go in and tell them upfront that I am going to mess up some words and to just roll with it. Memorization isn’t a problem for me once I get the words off the page and into my head. A lot of the time I have to write my lines out in my own handwriting so I can remember which lines are mine. History and science were always easy, math was a no-go, and grammar was difficult due to trying to figure out where things go. It just wouldn’t make sense because it wasn’t how I would say it in my brain.
But overall, school was easy. When I got older, I just needed a little bit of extra time. School didn’t really click for me until about eighth grade. After-school sports just didn’t happen for me and so, it was all really tough until I realized it is just going to suck. I am going to have to work harder than everybody and that is OK. I never was a social butterfly because I got bullied a lot. The friends I did make at a young age, seventh grade, are still my friends and I know they will be there for me forever.
What made you decide to become an actress?
I don’t know what bug bit me but I knew I wanted to be an actress before I could speak. I remember being about 2 years old when I first thought, this is what I am going to do. By the time I was 8 years old, I wouldn’t drop it and so my mom said, OK let’s go to Los Angeles. We literally stayed at a hotel across the street from the Burbank Airport and sat outside and just waited to hear someone mention something to do with acting. I still can’t believe my mom was like, “OK, we will just go to LA and your dad will stay in Tahoe and give us money so we can do this!”
What helped you overcome apraxia the most?
My parents never babied me. They didn’t treat me as if I had a disability. They put me in everything — tap, ballet, jazz, hip hop, ice skating, riding dirt bikes, everything! They wanted me to gain the coordination and balance, have the frustration and get over it, learn to work with it and make it OK to learn that life isn’t just going to go your way.
What has been the hardest part of having global apraxia?
There have been several things throughout my life but currently, I signed on to a new movie, “Step Sisters.” It is about a Greek sorority that steps (a dance genre). All of stepping is processing and sequencing. I came home crying a few times before I went to the director and choreographer and told them. They have been wonderful in helping me. I still have very hard days, I come home crying, eat a chocolate bar and brush it off.
Overall though, I think I am stronger person than your average 22-year-old walking around because of what I have had to deal with. I think that’s true for anyone who has to overcome something of that sort at a young age. I do feel blessed I had parents who were so incredibly loving and so accepting of me and my downfalls that they actually made it something to rise up with and become stronger.
If you could tell other children that are struggling with apraxia something, what would that be?
I would want them to know that sometimes other kids and other people in general can be mean but you cannot let them get to you. The only people that matter are your family and the family you pick, which are your friends. The only thing that matters is if you are happy with you. Wake up every morning and do the best to your ability to do the best you can do. Even when people are mean, do not partake in that. Be the very best you can be.
If you could tell the peers of a child with apraxia something, what would that be?
Sometimes, things aren’t as they appear. Just because somebody seems different or like they don’t understand, your words still hurt. Words hurt so much. Just offering a smile or trying to communicate with someone means so much more than what you can imagine. Be more open minded, more understanding, and more open hearted.
I am not exactly sure how to describe the connection I feel with Gage and Michele, It’s as if I have known them my whole life I suppose. We all agree that our paths crossed purposely and intentionally. Maybe it is just to tell their story or maybe it is to change the way society views invisible disabilities. Either way after speaking with Michele it wasn’t hard to see why Gage is exactly who she is and how she managed to come so far.
How old was Gage when you knew something wasn’t quite right? What were your red flags?
She was maybe 6 months old, she never cooed or babbled. Gage was my fourth child, so I knew something wasn’t right.
How often did she attend speech and occupational therapy and for how many years?
We were fortunate that California had a program called PIPP that allowed Gage to go to school for six hours a day. It was a speech and occupational therapy school for children ages 3 to 6 years old. We also had a woman who came to our home three days a week during those three years to help implement and carry over what was being taught in school. Gage remained pretty close to nonverbal until she was 6 years old.
Did you try any special therapies, diets, etc.?
Gage tested high for pesticides when she was young. From that day on we have only eaten organic foods. We also cut out all sugar, dyes and gluten. To this day she still eats that way.
What did you think when Gage said she wanted to be an actress?
The first time Gage told me, she was signing it over and over. She wanted to be an actress. By the time she was 8 and a half, she really wanted to be an actress. We had saved up some money and her dad said, “Go, take her. She’s been through enough.” He stayed behind and worked and I took her to L.A.
What was the hardest part of being a parent of a child with apraxia/dyspraxia?
When she was younger, people just did not understand. Friends, family, the general public, no one. When Gage was around 5 years old, I took her to Sam’s Club. It was an hour drive from our small town and Gage was not happy because of the way her socks felt. I should have just gone home. Once inside, she started banging her head on the cart handle, I took her out and she was hitting her head on the floor, foaming at the mouth, screaming these awful sounds. I got her into the bathroom to try to calm her down. She began to calm down and I guess someone called the police thinking I was hurting her. The police barged in, pulled my hair, they wouldn’t listen to me. They took Gage out one way and put me in handcuffs going the other. Then Gage really flipped out. One of the taste-test ladies knew me from previous shopping trips and came running to the police, explaining the situation. Thankfully the police listened to her, they let me go and gave me Gage back. It was horrible! As she has gotten older and began acting, I would feel so guilty any time I watched her struggle in “the industry.” Like I should be protecting her but instead I am taking her to these places for these auditions.
Did you ever stop worrying?
No, I haven’t. But, the only thing I can do is make my child stronger, I cannot control the masses. I have always told Gage, “You are a chocolate chip cookie in a sugar cookie world. Who doesn’t love a good chocolate chip cookie?” meaning, she is perfect just the way she is.
When I asked Michele what she would want other parents to know she was very quick to tell me, “First and foremost do not second guess yourself. Do not allow someone with a degree to override your parental gut instinct, you know your child.” She went on to say, “As rough as it may get and stay – you are what they have. They live in a world that is so difficult for them to process and understand. You have to hang in there.”
Gage remarkably chose a profession which forces her to confront her biggest obstacles on a daily basis. Her perseverance to overcome her deficits speaks volumes to her character and the strength of her support system. Gage admirably credits her parents for setting the stage for her success. In the words of her mother, Michele, “Everything you teach them, regardless of how small it may seem, a new word, a new sign, you are making steps to making their life better. Do not listen to the negativity.”
It’s hard describe what it feels like to speak to someone who can truly relate to your child. It was as if I had the ability to speak to my son nearly two decades from now to hear him express his feelings, his fears and his struggle. I was choking back tears listening to Gage talk. I was overwhelmed by a variety of emotions. It was heartbreaking to hear: she was bullied for things beyond her control, she didn’t form genuine friendships until seventh grade and she can explicitly recall the frustration of being unable to communicate her basic needs. On the other hand, it was inspiring: her contagious love of life, her enviable strength and boundless resilience. Being able to speak to her wonderful mother who has always been an amazing advocate for Gage was so comforting. It isn’t often I speak to someone who gets “it.” For those of you who do not get “it,” well, breathe a little easier. For those of you who do get “it” remember you are not alone and your child can be anything they desire, no matter the mountains that may stand in their way.
To learn more about apraxia, dyspraxia, or sensory processing follow me at www.apraxiamommabear.com.