Mother and daughter standing together with mother's arm around daughter

I couldn’t understand what my daughter was trying to tell me, but she was pointing frantically and trying as hard as she could to say something. Her words were slurred and gobbled together. I could hear she was intent on saying something specific, but I could not discern any actual words. The cashier eyeballed us both carefully as her words turned to screeches.

We’ve got to get out of here, I thought as my daughter began to melt down.

I paid as quickly as I could, but my daughter had already started screaming and thrashing as tears slipped down her cheeks.

They probably think I am kidnapping my own child, I worried silently as the curious eyes going into and out of the store watched me push the cart toward the car. I ignored the dirty looks and shaking heads as I spoke to my daughter soothingly. My heart ached because it seemed to me like she knew what she wanted to say, but her words were unable to take form.

“I am so sorry, sweetie. Mommy is having a hard time understanding you,” I said.

Finally, I heard what sounded like the word “bag” as she pointed at one of the grocery bags. It clicked, and I thought she might have been trying to tell me she wanted to carry her favorite crackers out of the store. Her frustration seemed to be appeased, and her tears disappeared as she happily hugged her box of crackers when she was buckled into her car seat.

I have encountered looks of judgment during my child’s meltdown. But in my experience, what might look to others like a “tantrum” in public is actually my sweet little girl trying to speak.

She has speech issues related to childhood apraxia of speech, which is a speech disorder that involves the muscles used for speech and the brain having difficulty sending the appropriate signals. A child with apraxia might have difficulty communicating effectively, which can cause the child frustration. In my daughter, this frustration might manifest itself in the form of anxiety, withdrawal or screaming in an attempt to be heard.

Our daughter was a quiet baby and prone to choking episodes that got worse with solid food. When she was 2 years old, our pediatrician recommended a speech evaluation that led to evaluations by an occupational therapist, school psychologist and a special needs educator. We went through sensory assessments, learned new terminology, went over signs and discussed IEPs.

When the evaluations were over, we learned that her intelligence, behavior and comprehension were considered “typical.” We were also presented with a plan to start therapy for childhood apraxia of speech.

Our daughter will turn 4 in a few months, and she is becoming more intelligible, even if she often reverts to what is referred to as “jargon.” Each day, I am understanding more and more of what she is saying due to a combination of her increasing intelligibility and my own ability to better discern her speech. Some days, though, I’m not able to understand her as well. There are some days she has meltdowns.

Next time you see a parent whose child is having a meltdown, save the dirty looks and accusing glances. There is often much more going on than meets the eye. And remember, kind gestures can go a long way.

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I have apraxia. Here are six things my speech therapists never told me, and yours may never tell you.

1. There will likely be social and emotional struggles. Growing up with apraxia, I certainly had my fair share of friends, but this does not mean I was not affected. I was asked on the playground to say hard words the kids know I couldn’t say over and over. I was asked why I was pulled out of class. The kids would groan when it was my turn to read out loud. Parents would say, “you need to articulate” and repeat every sentence. Grown-ups would smile and nod, pretending they knew what I said but ignoring me with a lack of response. Your therapist may say it will affect relationships, but they probably won’t tell you about the little things that happen every day.

2. It is more than a childhood disorder. You may always stumble over words, and have a hard time talking, especially when tired. Your friends may laugh when you fumble, thinking you just need sleep when really there are residual effects. You may never master sounds – especially vowels, and get asked over and over where your accent is from. You may be forced to take foreign languages, and get marked down for pronunciation when you cannot even form the correct sounds for your native language. Life does not suddenly get better when you can produce your /r/ sound; you may always be battling to talk.

3. You will probably be discriminated against. At some point or another, it will happen. You will be told you cannot be a public speaker, you cannot be an English teacher, or you cannot master another language. I was told I can never be a speech therapist – yet here I am in graduate school fighting the stigma. You are a minority, and the world is not yet set up to accommodate people who are different. You can become stronger because of this, and be a natural-born fighter.

4. You may constantly have to fight for your accommodations. If you have multiple diagnoses, schools often overlook apraxia, either not caring or not knowing what it means. If you are one of the few like me, apraxia has affected your reading and segmenting – with standardized tests results that appear similar to those diagnosed with dyslexia. But schools may not focus on reading and you’ll have to fight to get the appropriate accommodations. Teachers may see accommodations in college and laugh or groan because it means more work for them. But I believe you will find your voice, and this will make you a stronger individual.

5. If you choose to be a speech therapist, professors and professionals may knock you down. They may make you take the standardized tests with classmates and humiliate you when you fail the test. Articulation teachers may question if you can do it, especially if you still have troubles with pronunciation and sounds discrimination. They may tell you that you can’t engage with children, because you may still struggle with prosody from time to time. They may tell you that you should pick a different career, maybe be a teacher.

I believe you can be whatever you want to be – you will work harder and cry more, but you are a fighter and will make it. You know how hard therapy is, and how many struggles come with not being able to communicate. You can be a better speech therapist because of this. Never let anyone tell you that you cannot do something.

6. You may always have struggles, but you can be successful. You’ve overcome so many challenges that others do not have to think about. You can develop a natural empathy for others in pain, as you have been there. This will make you a better person, one who can change the world. Maybe you are still scared to talk to people you want to impress, maybe you are scared to talk on the phone, and maybe you will always be angry with the person who said you couldn’t do something. That is OK. You will flourish in passion, in empathy, in strength, in thinking on your feet, in finding alternative ways to communicate. You will always be part of the apraxia family.

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To the family just starting out with an apraxia diagnosis … breathe.

I know it’s hard because I’ve been there. Try not to let your thoughts and fears consume you; remember your child is still your child despite the diagnosis. Many people are unaware of apraxia, which is a neurological motor planning disorder. A child with apraxia knows exactly what he wants to say, but the breakdown between the brain and the mouth prevents him from doing so. It can be very frustrating for the children and families of those struggling with this speech disorder.

As your children’s guide and leader, you’ve been thrown into a position for which no parenting book prepares you and to which no one you know can relate. Information and therapy names, appointments, and evaluations are now barraging you faster than you can digest relevant information. I know. It feels overwhelming.

Unfortunately, you will be subjected to ignorant, infuriating, hurtful comments, yet most people are too oblivious to realize how they have made you feel. Sometimes those comments will come from family, sometimes from friends, and sometimes from complete strangers. Although 99% of the people you encounter have no idea what a day in your life looks or feels like, most won’t hesitate to voice their opinions. Try to be patient and know that awareness can emerge from ignorance. Help others understand — not just for your child but also for every child. We’re all in this together.

It’s OK to cry or to be angry, exhausted, and frustrated. It has been almost two years since our son Ryder’s diagnosis, yet some days I want to scream, stomp my feet, and yell, “It is not fair!” No, it’s not fair, but Ryder needs me to be on top of my game, even when I don’t feel I have the strength. So after my occasional pity party, I pull it together again. He deserves that. I return to my frequent talks with his SLP, OT and ESE. I rally his team to do their best, and I do mine. Remember that children with apraxia need you to be strong, to fight, to advocate. For our children to succeed, we all have to work together.

I find confidence and strength in gaining knowledge and trying to make a difference in Ryder’s world. So I read and study every available article — and that’s how I found CASANA. For the first time, I felt someone understood how I was feeling and offered a wealth of information to help me anticipate the road ahead. Last summer I attended the CASANA conference in San Antonio, Texas, hoping to educate myself about apraxia and connect with the hundreds of others whose children are on a path similar to Ryder’s. Looking over the class options with me, my husband said, “No matter what, I want you to take this class, ‘Your Oxygen Mask First.’” I wasn’t thrilled by the idea, and I wanted to take another course scheduled at the same time, but he told me I needed it. It felt selfish attending a conference to learn about ways of helping my son but instead listening to someone talk about me — but I grudgingly selected the class.

The speaker began by saying, “Think of your life like a plane. You must put on your oxygen mask first. If you do not take care of yourself, you will not be able to take care of your child.” The moral of the story is if you don’t take care of yourself, you will drain yourself and run out of oxygen. It hit me like a ton of bricks. I hadn’t realized how drained I was mentally, emotionally, and physically. I had nothing left. I was almost in tears listening to this woman tell me I had to put myself first. I couldn’t remember the last time I had slept through the night, gone a day without spending hours looking for information online, attended a yoga class (there are probably cobwebs on my mat, and Lord knows my yoga pants are for grocery shopping at this point), or had coffee with friends. Those days seemed so far gone, like another lifetime. I had spent every day consumed with worry, fear, anxiety, and guilt about something I could not control. Was I neglecting the needs of my daughter or my husband? Was I making the best choice about Ryder’s therapy? His school?

I constantly feel guilty spending any money on myself or on things that are not necessities. The guilt is palpable. It stays in my throat and in my head, controlling everything I do. I’d previously had no idea how hard the ebb and flow of apraxia would be for my family and me. After the CASANA conference, I returned to Jacksonville and told my husband, “I must do something for myself. I officially need a break, a minute to breathe.” I had never previously left Ryder. We rarely go out, we do not have babysitters, and he comes along everywhere I go. We all have different experiences that truly soothe our souls. For me, it’s live music. So I perused the concert calendars, and then I booked a flight to Colorado to see one of my favorite bands at Red Rocks. Financially it was not an easy decision, but mentally, I had to do it.

In Colorado I spent three days decompressing while surrounded with people who gave me strength when I had none. I allowed myself to be vulnerable, stay up late with my friends, and talk honestly. We are fortunate to have a few true friends who are always there for us, who love our children as we do, and whose presence lightens our mental load and helps us recharge. I needed them so much more than I realized, and I’m so thankful my husband recognized what I was unable to see.

Do not make the same mistake I made. Don’t wait until you are burned out. Instead, reach out, ask for help, and take some time to do what you love. Breathe. Find your source of strength. You will need it. This long, evolving road will require the best of you. Some people find strength in a supportive friend or an online support group, and some turn to their faith. There is no right or wrong answer, but know you need support. Sadly, you will lose a few friends and maybe some family members in the process. But you will gain support and bond with people who will share your path and know your fears. They will understand why you sometimes avoid social situations. Take comfort in knowing your child will be OK. With frequent speech therapy, he can make huge gains. Your world is not ending; it’s only changing. As alone as you may feel, try to think globally on the next sleepless night, whether facing your fears before an IEP, feeling anxiety about the future, or feeling exhausted from fighting the insurance company.

Apraxia-Kids—Every Child Deserves A Voice on Facebook is my second family. At 11 p.m. or 3 a.m., someone who understands exactly what you and I are going through is available. I want your child to succeed as much as I want this for our son. Sometimes it really does take a village to raise a child. Personally, I find strength in trying to make a difference for all our children. To help our community and our family, I started a walk for children with apraxia. I have gained great strength from speaking with other parents, helping families navigate our convoluted system, and watching my son make friends. All the money we raise from the walk benefits CASANA, the only national nonprofit dedicated to giving every child a voice. It is used to provide iPads as communication devices for children with apraxia, speech therapy grants, parent and speech pathology education, as well as research, since there is currently no known cause for most cases of apraxia.

Follow this journey on Apraxia Momma Bear.

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Thinkstock photo by Katarzyna Bialasiewicz

I lived the first 32 years of my life being an obsessive overachiever. I needed to get the best grades, have a perfect driving record and get to the highest level on Candy Crush. As my daughter’s due date drew closer, I envisioned raising my own little certifiably genius, overachieving child who would know all her colors before her first birthday and be reading chapter books by the age of 4. OK, maybe 5. We’ll cut her a little slack.

As she grew that first year, I ambitiously ticked off each milestone and rejoiced in her brilliance when she reached one much earlier than the so-called experts claimed was typical. She had her full set of baby teeth at 17 months. Of course, she was destined for greatness. Rolling over, sitting up, eating solid foods, walking — I was already pricing flights to Stockholm so we could accept her Nobel Prize!

A few weeks before her first birthday, we spent the day with a friend’s little boy who was just a few months older than our daughter and was already stumbling his way through most of the alphabet. My competitive spirit kicked into overdrive. If he can do it, my daughter can do it! Then 15 months rolled around and still no alphabet. In fact, she had no distinguishable words at all.

At 18 months, all her friends were showing off their impressive vocabulary of animals, household items, names of family members and TV characters. My daughter had attempted a few times to say “Momma,” although it came out more like “Mamamamamama.”

Why didn’t she have any words? She should be reading by now. All the medical professionals in her life kept saying, “She’s just a late bloomer,” “Lots of kids don’t talk until they’re 2″ and “Just give her time.” But I didn’t want to give her time; I wanted shock and awe at her second birthday party when she recited the Pledge of Allegiance in front of all our friends.

After she turned 2, we started digging in to get to the root of the issue. We heard words like autism and deafness. We saw lots of specialists: ear doctors, head doctors and therapists. Finally, everyone came around the only diagnosis that made sense: apraxia. I had to face the truth that my daughter wouldn’t be the youngest person in her Sunday school class to recite the alphabet — backwards. In fact, she wouldn’t speak any intelligible words until after her third birthday. It took her a full six months of speech therapy to even start to get the hang of the letter “B.”

Apraxia challenged the overachiever in me. It felt like all my hopes and dreams for this little person came to a screeching halt. How can I teach her 200 sight words before kindergarten if I can’t understand her? How will I know if she can count to 100 when she only speaks with vowels? How will she give her valedictorian speech if she can’t even talk?

We are now eight months post-diagnosis, and this spunky little girl has taught me to embrace the fact that she is on her own timeline. Whatever accolades I may have wanted for her, no matter how wonderful they may be, might never be a reality. We don’t get a detailed milestone calendar with apraxia. It’s all a big unknown. I don’t like that. I’m task-oriented. I want a measurable goal we can work toward. I want to check things off our list. I want someone to tell me when my daughter might be able to “catch up” with other kids her age, although I know she might not ever catch up.

Progress is important, but I know her greatest achievement won’t be the day she finally begins a word with a consonant sound. In my mind, she’s already an overachiever. She faces life every day with a disability that makes one of the most basic, natural human functions extremely difficult for her. She could easily be embarrassed about her disability, but she isn’t. She’s aware of it, but she doesn’t hide. She’s a social butterfly, she loves to sing, she loves books and she makes friends wherever she goes.

My daughter’s diagnosis taught me to slow down and enjoy her life as it unfolds. I’ve learned to let go of who I think she needs to be and embrace who she is. I don’t want to waste time wishing for a childhood that I projected on her. I want to walk in step with her, at her pace and on her own time.

It can be a long road with apraxia. But who knows? There might still be a valedictorian speech waiting for her at the end of it.

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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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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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Stock photo by Siri Stafford

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