Boy running through field.

Feeling 'Lost in the Shuffle' as Parents to a Child With Dyspraxia

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Our story began like many others. After an uneventful pregnancy and a relatively easy labor, I gave birth to a healthy 8 pound 9 ounce boy on May 20, 2011. Our sweet Ryder progressed as all the charts said he should, met all the milestones, gained weight and height toward the top of the charts, and started walking at 9 months. At around 10 months, he began to say “cat” very clearly; since we have two cats, it was a natural first word for him. We were always complimented on what a quiet baby he was. In hindsight, we realized that he was very quiet, never really cooing or babbling as a baby. When Ryder was 14 months old, we moved from Boulder, Colorado to Jacksonville, Florida.

After our move, Ryder stopped saying “cat” and began to say “meow” instead. It was cute at first, but then I began asking our new pediatrician about the substitution of words for sounds. I was told, “It’s not a big deal, don’t worry about it; he obviously understands everything.” OK, I thought, she’s the professional, right? Over the next 18 months, Ryder gained a few words, including “momma,”
“dada,” “Sasha” (his sister), “dog” (which he usually referred to as “woof”), and others, totaling 34 words when he was almost 3. At every doctor’s appointment, I brought up his lack of vocabulary. After a year of being told, “He’s a late talker, he understands everything, stop worrying,” we became
accustomed to what I call the never-ending game of charades. He could walk me to his cup, and I knew what he wanted; I’d show him the milk or water and he would point. He could point to the movie he wanted to watch or the puzzle he wanted. I knew it wasn’t “normal,” but I had asked all of the questions, and it had become “our normal.”

Around October 2013, the conversation with the doctor changed. I was told that I talked too much
for him, that I don’t make him work for it; that it’s because I have an older child, and that I should refuse to give him something until he says it. He was 2 and a half years old. Again, I thought, she’s the professional, and I have to rely on her expertise. I had better change everything immediately, because I am hindering my child’s development! I felt like a complete failure.

I met with Ryder’s teachers, who had also had expressed concern, and told them what the doctor had said. They began to try the things the doctor had suggested. Not only did we not gain any words, but everything also became a fight. I shouldn’t give him milk because he can’t say it? Or dinner? Or a toy? Where was the line? What kind of advice was this? Everyone was miserable. When his teachers and I met again, they suggested that he undergo speech screening.

In April 2014, I received the results of Ryder’s speech screening, covered with scribble marks,
a check next to “Fail,” and a note that said, “Call me.” The speech pathologist said he didn’t have enough words for her to screen him. She told me he could point to every letter, number, and color, but he couldn’t say the word for each. Noting a gap between his expressive and his receptive speech, she said, “I think your son has something called apraxia; he needs a full evaluation immediately.”

I’m not sure I heard anything she said after that, because I was frantically Googling while she was still speaking. What was apraxia? Would he be OK? What did this mean for him, for us, for our future? Would he ever speak? As I read the apraxia “checklist,” I realized that he met every single mark. One of the biggest indicators of apraxia is a severe gap between expressive and receptive communication. How did our pediatrician not know this? I will never forget the tears and hopelessness I felt on that day. When we took Ryder for a full evaluation, the speech pathologist’s suspicions were confirmed. We found a new pediatrician, who immediately confirmed the diagnosis and told us that out of those 34 words we clung to for hope, 85-90% would be considered unintelligible, meaning that only we understood Ryder.

Going home to learn everything we could, we discovered that childhood apraxia of speech is
found in about one out of every 1,000 kids. They understand everything going on around them, but they have a neurological motor planning disorder that prevents them from speaking. There is a wide range in severity, from being completely nonverbal to experiencing fluency issues, pitch changes, difficulty “planning” what they are trying to say and/or a combination of these characteristics. To progress, children with apraxia require intense, frequent one-on-one speech therapy. There is no matrix to follow.

Then we received a second shock: most insurance companies deem this condition a “habilitive” or developmental delay, meaning that our child never had the skill, so he can’t receive rehab to regain it — or if it is developmental, he will grow out of it and we should refer to our school system for assistance. Calling every government agency I could, I was told everything from he’s too young, to he’s too old; you make too much, you already have insurance, so we can’t accept you, and my favorites, “We have a 10-year waitlist” or “We have closed our waitlist because we have no idea when we will reach the end.” This past year has been the hardest, loneliest, and most frightening year of my life.

I can’t help wondering, does he have friends? How was his day? Do kids pick on him? What is school like for him? Ryder wears an ID bracelet and necklace, as he could become separated from us and not be able to communicate. We have good and not so good days.

With all of the therapy and information, parents and caretakers of children with apraxia often feel lost in the shuffle. No, our children will not die from this, but we as a family are forever changed. This lifelong battle requires support from family and friends. We need support, and our children need support and patience. Please do not minimize our journey as “only a speech” disorder; the fear, frustration and isolation we feel are incredibly real.

Follow this journey on Apraxia Momma Bear.

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What People Don't Understand When Your Child Doesn't Speak

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There’s an awkward moment that sometimes occurs when I’m out with my daughter, Jaycee, in public. It could be a stranger asking her what her name is. It could be someone who gave her a compliment who is patiently waiting for some sort of reply.  

It is then that I usually have to explain she can’t say many words. This leads to a wide range of reactions from people. The majority seem to feel that those with limited or no verbal speech have none because either no one made them talk growing up or the person just doesn’t want to talk.

The truth is far from this idea though. Generally, there is a reason why individuals have no or little verbal speech. It is not a result of someone not trying hard enough. When I try to explain this to people, it often seems like a foreign concept to many.

The vast majority of people with Down syndrome are able to verbally communicate. My daughter, on the other hand, struggles in this area. Jaycee was considered nonverbal for many years. I now consider her minimally verbal at age 10. She says about 20 words clearly now and attempts many more words. Most of her communication is with sign language and her communication device. She has difficulty with verbal speech due to childhood apraxia of speech and intellectual disability, both of which can be associated with Down syndrome.
Other individuals who are nonverbal may have difficulty due to a brain injury, stroke, profound intellectual disability, or muscle weakness in the face, to name a few. In short, understand that if someone doesn’t speak, there is a medical or developmental reason for it.

Outsiders don’t understand why my daughter doesn’t speak. I have heard comments like:

“She could talk if she really wanted to.”

“I guess everyone talks for her, so she doesn’t have to speak.”

“No one is making her talk, otherwise she would be talking.”

“She has nothing to talk about or she would talk.”

“If she can sign so well, she should be able to talk.”

These comments have lessened as Jaycee has gotten older. When she was younger, it seemed like my husband and I were seen as partially to blame for her lack of speech. Some of the comments were insulting, as no one knew what we were doing to help her in this area.

Trust me: Lack of verbal speech is not a result of no one trying. When Jaycee was younger, I spent hours with her at home practicing sounds in isolation, working through the Kaufman praxis words, and encouraging her to use vowel approximations of words (i.e. “ee” for eat). Besides all this, Jaycee got official speech therapy at school. The result was basically no progress in verbal speech, and we were both frustrated. Jaycee got to the point where she shut down when asked to say a word; she recognized speaking was very hard for her. She doesn’t speak because her mouth and brain can’t work together to form the sounds like I can. It’s her body’s fault and no one else’s. I think it’s hard for people to grasp the concept that speaking doesn’t come easily and naturally for everyone, but this is a reality for some.
Even though Jaycee doesn’t have much verbal speech, she has much to communicate about. She has hundreds of signs, which she uses to request, name, and ask questions. Sometimes, this misleads people. Just because someone can sign, doesn’t mean they can speak. Communicating with your hands and your mouth are two different things.

Jaycee also uses her communication device to talk about a variety of subjects. Jaycee has emotions, thoughts, preferences, opinions, and wants that she talks about. I know Jaycee is not alone in this.

Just because someone doesn’t have the ability to speak doesn’t mean the other forms of communication aren’t valid or important. It also doesn’t mean someone deserves blame for the words that just aren’t there.

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When We Asked Gage Golightly If She'd Answer Questions About Her Apraxia

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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.

little boy with apraxia holding photo of gage golightly

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.

little boy with apraxia holding picture of gage golightly

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.

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What You Don't See in This Picture of My Son With Apraxia

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There are so many things you don’t see in this picture at the right.

Ann Weiss’ son (Photo credit: BellaEva Photography)

What you do see is an exuberant boy. He looks like he doesn’t have a care in the world. He looks like he is the life of the party. He is light, happy, joyful, playful and quite handsome (wink).

You might also think, “Wow, I wish I were in Hawaii right now.” (Sorry about that. We were lucky to be able to go to Maui for a family reunion this summer.)

If you look harder, you might see a kid who doesn’t like to have his haircut, so it’s a little uneven. You might wonder why his lei is crooked (He’s forever in motion, never stopping for a photo.) You might notice a wrinkly shirt, despite Mom’s best attempts at ironing.

What you don’t see is kidney failure at 3 weeks old.

You don’t see his tiny infant body writhing in pain from IVs, catheters and life-saving medication being pushed into his veins. You don’t see the heart monitor showing a near-fatal rhythm. You don’t see his parents’ desperation — both doctors and both unable to fix their son. You don’t see me, cradling him, crying uncontrollably and praying for just one more chance. You don’t see the nurses and doctors standing reverently still while the chaplain quickly baptizes him with another prayer.  

You don’t see the pain of multiple surgeries. Multiple second opinions from around the country. A child with drainage tubes hanging out of his lower abdomen, and the impossible task of changing a poopy diaper while trying to keep the tubes clean. The agony of trying to make the best medical decisions for this boy, despite there being no single best option for a rare condition.

You don’t see the intensive therapies. Swallowing and feeding therapy. Oral motor therapy. Craniosacral therapy. Occupational therapy. Physical therapy. Speech therapy. Early intervention therapy. The worry over not enough therapy. Not good enough therapy. Too much therapy. Changing therapists. The cries and protests from my son about therapy. The meltdowns before, during and after therapy. Our collective exhaustion over every … single … therapy.

Something else you might not see in this picture is this boy’s stubbornness. His determination. His grit. He has worked so hard to get physically strong, which you might glance over in this picture. You don’t see how hard it is for his brain to develop the right motor plans to overcome his apraxia. You don’t see the struggle every time he opens his mouth to put the pieces together.

You also can’t see how greatly this boy has impacted his family. We all feel such deep pride and happiness that he is part of us. We have shared in all the hurdles and all the successes. We have become individually more compassionate, more aware and more inclusive. Honestly, I think he has taught us more than we have taught him.

I’m glad you see the happy boy that he is. Because overall, he’s more than his diagnoses, his therapies, his challenges and his past. He’s a strong, courageous, fun, sensitive and beautiful child who I wanted to honor with this amazing picture. A picture is indeed worth a thousand words. Or at least 500 words, anyway!

Photo credit: BellaEva Photography

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When People Ignore My Daughter With Apraxia After She Speaks

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When you have a child with a speech disability, the stares from people can get overwhelming. Now don’t get me wrong, most people are looking at me to figure out what my child just said with no real intent to be rude.

Most of the time, I repeat what she says with a smile on my face. I’m happy to do it. As her mother, I’ve been given the gift of being able to understand and decipher what she’s really trying to say.

For instance, she replaces all of her S sounds with an F, and all of her M words are replaced with an N. I could go on, but I’m sure you get my point.

But how do you handle it when there are no stares and people just ignore your child as if she said nothing at all. You wait for their eyes to meet yours, but it never happens.

Instead, they give a very noticeable head nod and crooked grin. It makes them feel immediately uncomfortable, and they think by ignoring my child, they don’t have to make the situation worse. Worse for who I wonder?

Because here’s the thing, if I noticed your uncomfortable grin, then my daughter did, too. So I’m sorry if you might feel uncomfortable, but I will always repeat what my daughter said whether you look like you care to finish the conversation or not. I would much rather you as the adult feel uncomfortable then my child. That’s exactly how she will feel being ignored by you. She can read that uncomfortable grin you have on your face just as well as I can. I never want my daughter to think what she has to share with the world isn’t worthy of hearing.

So yes, I will address the elephant in the room whether you want to or not.

When my daughter was younger, I would get an incredible amount of suggestions from people on how to help her. These “suggestions” weren’t made by experts or anyone who had experience with speech disorders. Nonetheless, the same comments kept being made over and over again as I smiled through everyone of them.

“Oh, she’ll get there.” (I heard this one was constantly.)

My second cousin had problems with their R sounds for awhile.” (Yeah, sorry, that’s not the same thing, I would think to myself.)

Einstein didn’t talk until he was 5.” (My “favorite” and the most popular.)

Instead, please ask questions like, “Hey, how’s therapy going?” or “What does her therapist think about her progress?” 

I need you to understand what apraxia of speech really is. My daughter will not wake up one day and snap out of it. She will not turn 5 years old like Einstein and just speak. She will have to work for every sound and every word. She will probably continue with speech therapy for a long time.

At some point, I need you to acknowledge it. If you don’t ask questions, then I can’t tell you. And if you don’t listen, then you will never learn. The issue will always remain the elephant in the room.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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How My Son With a Rare Disorder Is Reaching His Full Potential With Speech Therapy

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Imagine not being able to speak to your family and friends. In your head, you know the exact words you want to say, but when you try to cue your mouth to create the sounds, it ignores your commands, leaving you frustrated, confused and silent.

Now imagine you’re also three years old. That’s what it’s like living with childhood apraxia of speech.

According to the American Speech Learning Hearing Association, “CAS is a motor speech disorder. Children with CAS have problems saying sounds, syllables and words. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.”

Most people have never heard of CAS. I certainly hadn’t when my son received this diagnosis a little before his third birthday.

Susanne's son blowing bubbles
Susanne’s son.

He had already been working with a speech therapist twice a week for the past several months, after our pediatrician determined he wasn’t hitting some of the typical communication milestones at his two-year well check visit.

Does he point to things or pictures when they are named? Yes.

Does he say sentences with two to four words? No.

Does he repeat words overheard in conversations? No

In fact, he didn’t say many words at all —and the ones he did say required some translation by a family member. I’m sure we shocked more than a few bystanders out in public whenever he would shout, “die!” at me instead of “bye.”

I was hesitant to even bring up my speech concerns with the pediatrician. My son was only two years old, and friends and family had tried to reassure me, “Boys are always slower to start talking,” and “Second kids usually start talking later.” Even well meaning strangers at the park would share anecdotes about a niece that had the same problem and then one day just miraculously started speaking in full sentences.

We waited a few months for signs of progress, but my mother’s intuition nagged at me the entire time. Finally, on New Year’s Eve 2011, I reached out to a speech therapist and scheduled a consultation.

At the initial evaluation she ran him through a series of play-based exercises to assess the range of sounds he could make, and also determine his oral strength and coordination. I expected him to have challenges enunciating many of the words and sounds, but I was surprised by his struggles with the coordination tests. He not only couldn’t blow a bubble using a bubble wand, he couldn’t even coordinate his mouth and breath to make a bubble jiggle when she placed one on the wand directly in front of him.

We started him on schedule of therapy sessions twice a week and within six weeks had our first breakthrough. We were outside watering the garden one night, when he ran off around the corner of the house while shouting, “bye bye!” It was the first time he used the word ‘bye’ instead of ‘die.’ I wanted to go give him a lecture about staying where I could see him, but instead I just stood there, smiling, the hose in my hand watering nothing in particular, as tears streamed down my face.

His progress continued, and at his six-month evaluation I was expecting his therapist to tell us that he was nearing graduation. Instead, she asked me if I had ever heard of Childhood Apraxia of Speech.

I had not, and I’ve learned over the years that very few people have. According to Isa Marrs, a speech language pathologist, CAS affects only 2-3 children per 1,000. Because the symptoms are similar to other speech disorders, up to 75 percent of cases are misdiagnosed.  The research is underfunded and as a result, much about CAS is not fully understood.

Since there’s no clear research to determine what causes CAS, I did what any mother would do and I started making a list of my own potential reasons: the deli meat I ate while I was pregnant, a side effect of my beloved epidural, the time I couldn’t reach him in time and he got kicked in the head when walking too close to the swing set.

I tried not to dwell on the “why’s” for too long. Instead channeled my energy into “What now?”  The limited research available all supports aggressive therapy, started at as young of an age as possible.

We were fortunate that we had the benefit of a one-year head start with speech therapy. Although we could not afford to increase the frequency of our visits, I did become more diligent about doing our speech homework on days off: blowing bubbles, blowing whistles, drinking through a special straw, having him use a mirror to watch himself practice tongue exercises with Cheerios and ensure he was keeping his mouth closed while chewing. We purchased his favorite games his speech therapist used to encourage practice, Candy Land and Break the Ice transformed from simple board games to tools to help give my son the gift of speech.

In August 2013, almost two years after his first session, my son graduated from speech therapy. Today, he is in kindergarten, already reading chapter books and able to explain entire plot lines of Star Wars with such detail and depth that I have to ask him for a little break since “mommy’s ears are full.”  He is still working on his “R” and “Th” sounds He still has moments when his mouth can’t keep up with his racing, six-year old thoughts, but has progressed to the point where he is fully understood by all of his teachers and classmates.

Unfortunately, many kids with CAS can’t tell the same story. Their cases may be more severe, but in most instances it’s simply because they can’t afford the necessary therapy or never receive the correct diagnosis due to the lack of awareness about CAS.

Sharon Gretz, Executive Director of the Childhood Apraxia of Speech Association of North America (CASANA) stresses the importance of raising awareness for CAS: “Raising awareness about apraxia is crucial to assuring affected children and youth throughout the world are provided with the help they need in order to fully realize their potential. With appropriate speech therapy and the support of family and community, most children with apraxia of speech will become capable verbal communicators. Without appropriate help, that possibility seriously diminishes. This is what is at stake.”

I’ve seen firsthand what a difference the appropriate therapy can make in the life of a child with CAS. No child should be forced to live this magical period of their young lives with all of their thoughts and words trapped inside due to an uncooperative mind and body. No parent should have to hear their child’s playmates chatter on endlessly about all of their daily experiences while dreaming of the day they will be able to hear their child’s unspoken thoughts.

To learn more about childhood apraxia of speech, or to donate to help provide therapy for a child in need, please visit Apraxia Kids.

Follow this journey on The Dusty Parachute

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock images.

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