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

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


mother sitting with daughter

When People Ignore My Daughter With Apraxia After She Speaks

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

susanne's son blowing bubbles

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

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

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Lead photo source: Thinkstock images.

brothers smiling with bug hats on

What the Person Who Commented on My Son's Lack of Speech Didn't Know

brothers smiling with bug hats on
My boys

I’m sure you didn’t know who I was, sitting in front of you watching my two littlest guys. They were singing songs about bugs for an end of the year kindergarten performance.

I’m sure you didn’t know that was my youngest son on the end, smiling as he played with his pipe cleaner “tentacles.”

I’m sure you didn’t know I heard your comment when you said, “That boy on the end isn’t even singing!”

I’m sure you didn’t know that while I proudly watched both my boys, the comment stung.

I’m sure you didn’t know that he is on the autism spectrum and is predominantly nonverbal due to speech apraxia, even though his aide sat next to him.

I’m sure you didn’t know how many hours my little guy has spent in speech to be able to vocalize the words he does today. (Two to three days a week, an hour at a time for the past three and a half years.)

I’m sure you didn’t know how many nights all six kids and myself piled on my bed practicing these songs with him.

I’m sure you didn’t know how he would hand us the papers with the lyrics on them and smile as we sang them with/to him.

I’m sure you didn’t know how we worried if he would even be able to stand with his classmates and be a part of the performance, since he had melted down during practices.

I’m sure you didn’t know my heart was exploding with pride that day to see both my little guys on that stage, “singing” their bug songs in their own unique way.

I’m sure you didn’t know that while that boy on the end may not have looked to you as if he was singing, in my eyes, he was making beautiful music.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

These Words From a Genetic Counselor Changed the Way I See My Son's Apraxia Diagnosis

young boy holding stuffed frog to his chest
Allison’s son.

When Reed was first diagnosed with hypotonia and apraxia, some of the most healing words spoken to me were from a stranger — a genetic counselor tasked with talking to us over the phone about the life-altering condition Reed had. She told me the story I didn’t know yet: Reed’s diagnosis didn’t define him; it simply explained some things about him. Those words gave me a different story to tell.

And that story became my mantra every time my heart tried to throw up confusion and guilt and sadness and anger — all those grief-torn emotions. Doesn’t define him. Just explains some things about him. Doesn’t define. Just explains. Not defining. Just illuminating.

But five years has sanded off the ragged splintering grief and given me a new story.

His diagnosis does define him, just in a way that, at first, I couldn’t understand without waves of grief crashing down. Now I can acknowledge straight-forward that there’s not one facet of his existence those three extra chromosomes don’t touch. I don’t know — and never will — a Reed without hypotonia and apraxia. The way he walks, the way he talks, the way he holds his head cocked to the left, the way his frustration sparks fierce and just as quickly dissipates, the way his anxiety can overwhelm him — all of those are the sum of his multiplied genes, the most prominent qualities others often notice about him first. His genetic disorder is one of the most profound influencing circumstances in his life, defining much of what he does.

But here’s where the story takes a new direction for me: There’s more to know than what defines him. His diagnosis can’t account for how he loves to laugh at his own wicked sense of humor. How he is gentle and sweet and loves holding hands and cuddling up on the couch. How he adores dogs. How he could eat bread all. day. long. How he loves to run. How he observes and he asks questions about everything. How he’s a genius at hidden picture puzzles. How he loves to slide, throw rocks, blow bubbles, write the letter “e” and play hide and seek. And how much he loves his baby sister.

With Reed, we live both within the constraints of his disorder and yet beyond those borders, because there’s so much more to know about him than the existence of those three extra chromosomes. I’ll always be thankful for what that genetic counselor originally told me because her words probably saved my life a million times that first year. But sometimes as our grief changes, we need a new story — one that walks us through the present season with new strength and new joy.

Follow Allison’s journey on Writing Is Cheaper Than Therapy.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

A Mother's Thoughts When Her Child Doesn't Speak

When your child has delays in language, you may experience many emotions and thoughts as a mother. When my daughter was born with Down syndrome, I assumed she would have delayed language, as children with Down syndrome commonly begin speaking at a later age. However, that later age came and went with no words.

Today at age 10, my daughter says about 20 words clearly. She communicates mostly with sign language and her speech generating communication device. She is approximating more words than ever in the past year as she tries to make the vowel sounds in words while leaving off the consonant sounds.

I’ve had 10 years raising a child who was classified as either “nonverbal” or “minimally verbal.” As a speech-language pathologist working with toddlers, I am in constant contact with mothers who are concerned about their child’s talking. With these experiences in mind, here are common thoughts a mother has as she waits for her child to speak.

1. “My child isn’t talking, but it’s still early.” This is the time when the mother starts to notice some delays with her child’s language and speech. These are the early concerns. Some mothers at this point might seek help and have their child’s development evaluated. Others might brush off these concerns and give the child more time.

When Jaycee didn’t speak early on, I tried to find other reasons to be hopeful. When she learned the sign for “more,” I took comfort in the fact that she could learn language if she wasn’t saying it.

2. “My child still isn’t talking. She should be talking by now. Why isn’t she talking?” After some time, this stage of thought starts and lasts months or years. This is when a mother begins to question things she sees or hears (or doesn’t see and hear). By this time, the mother has most likely evaluated her child’s language and has started some type of intervention. The mother is starting to get worried as she sees her child’s peers saying much more than her child. The delays are becoming obvious to the mother and to others. This causes the mother stress and anxiety, as her child’s future may not seem to be taking a “perfect” path.

When Jaycee was 2.5 years old and only saying a couple of words, I had these thoughts often. I was stressed and worried about her. I threw myself into helping her at home working with her on sign language, oral-motor exercises and verbal speech drills. I was convinced I could do something to change the situation.

3. “A new sound/word! I heard it! It’s coming!” There will be a point when the child might say something new. Perhaps it’s a new sound or noise. Perhaps, it is a new word. It will be exciting because you have been waiting for this moment. It will give you hope. It is the positive moment in your child’s life that you have been waiting for. It will be met with celebration.

From here, mothers tend to take two routes. For some mothers, their child will go on to speak. Their worries will slowly die down as their child begins saying more and the delays get smaller. For others like myself, the new word or sound stays just one word or sound. This victory feels short-lived. Those of us who continue waiting for a significant amount of words will continue on this thought process.

I remember the time Jaycee said, “Mama.” I had waited for that word. It was exciting! Not only was it a new word but it was also the first time she had made a /m/ sound. I had reason to believe Jaycee would now start saying more words and sounds. More words did come but months between them. Nothing happened quickly.

4. “She’s not really talking yet. Something is seriously wrong.” By this stage, a minority of mothers still find themselves with a child with minimal or no words in their spoken vocabulary, well past the age of when these language milestones should occur. At this point, the mother realizes something is different. There has to be an underlying reason why the child isn’t speaking. Now, the mother might seek out a second opinion, ask for more speech therapy, ask for a new treatment approach or seriously consider alternative methods of communication. Tough decisions may have to be made, and the mother may find herself stressed at times over this thought.

When Jaycee was 5 years old and barely saying anything, I sought out a second opinion from someone with more expertise in this area. I was done waiting for words to come. It turns out my concerns were valid, as Jaycee was diagnosed by the second opinion with severe childhood apraxia of speech, which was no surprise to me. It was then that we started the process to obtain Jaycee’s communication device.

5. “My child may never be verbal.” Now years into a journey, a mother has come to the realization that her child may never talk at all or very little. This is a painful time for the mother. While this thought has always been in her head, the mother is now fully accepting this idea and coming to terms with what this may mean. This can affect the child’s future educational and vocational options. This may also affect the child’s ability to live independently. The mother does keep hope of their child saying new words, but some realistic expectations are now the focus.

For me, I had to sit with this thought for some time to fully comprehend it. Even though this thought had caused me great fear years prior, it was now evident that it had validity. What did it mean for me and Jaycee if she never really talked? The scenarios played out in my head for months. I learned that I wasn’t giving up on Jaycee talking if I accepted the fact that she never become very verbal.

6. “My child isn’t talking much, but any communication is good.” The thoughts in this stage with the mother revolve around thankfulness. Her child may not talk, so the mother is thankful for the things she can do. The child may be using sign language, pictures, communication devices or simple gestures to communicate. For the things the child can do, the mother is thankful. After years of hoping and dealing with emotions related to talking, the mother has reached a new level in her thinking. She is not focused on what the child is not doing but on what the child can communicate. When friends or family ask about why the child isn’t speaking, the mother can talk about it plainly and without emotion.

For me, I went through this stage with Jaycee when she was about 8 years old. I didn’t feel the need to compare her to other children anymore. I didn’t feel guilty for not working on her language and speech at home. I started fully encouraging a total communication approach (sign language, spoken words, gestures, communication device). I was grateful that Jaycee had ways to communicate with me. Words didn’t seem as important as communication in general.

7. “My child will probably not be able to have a conversation with me, but that’s fine.” After years of hard work, questions, fears and opinions, a mother has now come to the last stage. As she has watched her child grow older, the mother has truly come to terms with the fact that her child may never talk enough to hold a long conversation. This now seems like a fact and not a loss. Her child is still her child with or without speech. They have found ways to communicate and bond that surpass words.

For me, this has been the last stage. As Jaycee has developed a small vocabulary, but she may never speak in sentences or hold a conversation with me using words. But, it’s OK. I’m not sad about it. We have our inside jokes, special sayings and ways to communicate. Jaycee says what she can say, and that’s fine.

If you are a mom worried about your child not talking, hang in there. It’s not easy. But, I can tell you that your perspective will change even if your child’s verbal skills do not. No matter where you are on this thought process, just know you are not alone.

Follow this journey on A Special Purposed Life.

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