Jake's Journey with Apraxia

And the Friends We've Met Along the Way

After a day of playing outside, it’s getting dark, and I listen to my son and his friend in the backseat of the car as we drive home. Both boys are recovering from childhood apraxia of speech.

They are in the first grade and are busy strategizing about how they can best escape from Ashley, Teagan, Elizabeth, and Makayla who chase them around on the playground every day at recess.

“We’ll hide under the playground equipment and get Reed and Keith to stand guard so they can’t get us,” said Jake.

“Yeah, then we’ll sneak out the back and run around and scare them,” Jordan added.

More plans, giggles, and high-fives follow, excitement building to put their covert operation into action on Monday.

These boys … I thought to myself as I listened to each word flow effortlessly out of their mouths. Although there was a smile on my face, there were tears in my eyes. After all, this moment of candid conversation between two friends is a dream come true for a parent who has a child with apraxia.

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Ever since Jake and Jordan wound up in the same kindergarten class last year, I knew instantly what a rarity it was. This neurological motor speech disorder affects 1-2 children per 1,000 and they go to a Christian school with 320 students and class sizes of 15-20.

When a child has apraxia, their brain knows what to say, but the mouth, tongue, and jaw do not cooperate. Frequent, intense therapy is required in order to strengthen the brain pathways necessary for speech to occur.

In August of 2014, I met Jordan’s mom the first week of kindergarten after a friend of mine chatted with her at a get-together for new parents and she shared that her son had apraxia.

Jake and Jordan’s friendship also took off.

When they were kindergarten newbies, I wondered if they would click. Yes, they had this crazy thing called apraxia in common, which they didn’t even fully know the extent of, but would they have any other similarities?

I love this school work that came home in Jake’s folder around Valentine’s Day this year …

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Today, on the fourth Apraxia Awareness Day, I spotlight these two apraxia warriors. Not only for everything they have been through, but for everything they have become, and for all the great things I know they will accomplish in the future. Gooo Jake and Jordan!

These two boys …

Are little baseball sluggers, stride together when they race at P.E., gab about Georgia Bulldog football, love to decompress in the classroom with a fierce game of checkers, and like to hang out with their furry, blond golden doodles.

These two boys …

Say please, thank you, and ask how your day is going. They are compassionate and empathetic towards others and would never intentionally hurt anyone’s feelings. They have big smiles and even bigger hearts.

These two boys …

Battled for every single word they speak and sat in speech therapy day after day, week after week, year after year. They have both worked very hard to be where they’re at today.

These boys’ mamas …

Have cried buckets of tears, worried about their boys’ future, shuttled them to countless speech therapy sessions, and advocated for them time and time again.

The blessing of these sweet friendships were a rainbow after our storm.

 

 

Our family recently returned from a spring break vacation to the sunny, 75-degree coast of Florida. Jake is now seven years old and for the first time since he was born, we had a “normal” beach experience.

I looked at my husband that first day, toes in the sand, reclined back in a beach chair and said, “This is a blessing. You realize that, right? When’s the last time we were able to just chill at the beach?”

He responded with a laugh. “Ten years maybe?”

In Jake’s first year of life, he was a mess of eczema and would break out in splotches any time the sun hit his sweet baby skin. From age two to three, he was plagued with apraxia and sensory issues; the feel of gritty sand on his feet would send him into hysterics. For the past couple of years, the sensory issues dissolved, but a quick dip in ocean water made him break out in itchy hives.

But here we were this year armed and ready with a new attack plan … a wet suit. Allergies, listen up! We are not giving up without a fight!

“Won’t people laugh at me?” Jake asked when we first sucked his body into it.

This moment reminded me of a scene with Sally Field and the young Forrest Gump. “Don’t ever let anybody tell you they’re better than you, Forrest. If God intended everybody to be the same, he’d have given us all braces on our legs.”

My version of this it’s-okay-to-be-different speech was, “Who cares if people laugh at you? It doesn’t matter what they think. And anyway, this is what surfers in California wear. You’re gonna look way cool.”

So, the first day at the beach my little dude strutted confidently across the beach, boogie board tucked under his arm, and was ready to get after that ocean.

And it was a huge success!

As I sat there on one of those rare perfect moments that we’re granted in this life, I thought about how being a parent teaches us so many things. A few jobs I’ve acquired are: nutritionist, teacher, allergist, and speech therapist. (And those are just the fancy titles! Diaper changer, nose wiper, and taxi driver are not nearly as glamorous!)

I think being the parent of a child who is different transforms us into a unique concoction of dedication, stubbornness, and creative thinking. It’s a skill we are forced to acquire for survival; a plan C, D, and E when plans A and B fail. And it’s fueled by that thing in our hearts called love and the desire to provide our child with the best things in life.

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Signs that say “trick or treat” at Halloween, hunting down a sign language speaking Santa, hand cues that make the words come out by taking a different pathway in the brain, selling a school system on why a child needs more than one group session of speech therapy per week. Figuring out how a child with sensory or attention issues can best learn in the classroom. Using an AAC device if the words just won’t come.

We are all at different places in this journey of apraxia, etc., but this is something as moms and dads we have in common. Victories aren’t always rewarded with a perfect day at a beach, but each one is still special.

On that day, I took a moment to reflect on the wisdom I’ve gained from parenting a special child. Patience, a quiet heart that is learning to be content with the portion that is given, courage to speak up when necessary, outside-the-box thinking, and gratitude and joy for the little things in life that many people take for granted.

And as Kenny Chesney says in the song, that’s “The Good Stuff.”

 

 

 

 

 

 

 

A couple of weeks ago I had a consult with Jake’s allergist.

It was hard for me to put myself out there and discuss histamine intolerance and syndrome of allergy, apraxia, and malabsorption with him because they are not recognized as “official” conditions in the United States. We’ve been seeing Jake’s allergist since he was two, but I’ve never fessed up he’s off gluten, casein, and as of last year, foods with high histamine levels.

So, I swallowed my fear and spoke from the heart.

Guess what?!? He believes histamine intolerance is a legit condition! Here I was fully armed with the latest research our nutritionist from Canada provided me with and I didn’t even have to use it. He offered up a list of high-histamine foods and asked if I knew which medications increase histamine in the body. He said it’s not something I need to necessarily avoid if Jake needs medical attention, but something to be mindful of and to make doctors aware of.

I also gave him a copy of the Morris-Agin allergy, apraxia malabsorption study and this Vimeo video and he was “very interested” … yes, he said those exact words! I shared Jake was not eating gluten and casein and even got brave and told him about the scary laughing story! He didn’t act like I was crazy, didn’t roll his eyes, didn’t discount my stories … he listened and treated me with total, complete respect.

I passed a church sign on the way to the appointment that said, “Whatever is over your head is under God’s feet.” This became my mantra for the day and having the doctor’s reassurance that I am doing the best thing for Jake left me feeling much better.

My purpose in the allergist consultation was to discuss Jake’s safety in getting two cavities filled, which is why I shared our complete story with him. I am afraid he will have an allergic reaction to the numbing med, but he calmed my anxiety and said that reactions are extremely rare since dentists stopped using novocaine.

SO, I made an appointment with the pediatric dentist and went through a condensed version of my story with him. He also said not to worry especially since Jake will not have to be sedated. Anesthesia promotes histamine in the body, but general numbing meds do not.

But it wasn’t all good news … he said Jake’s cavities are so bad they will have to be drilled out and then have stainless steel crowns placed over them.

As if I haven’t over-analyzed this situation enough, yesterday I had a second opinion appointment with a dentist a friend recommended. The fact that the first dentist was booked for the next four weeks when he works full-time concerned me a bit. That’s a heck of a lot of cavities he’s filling. (And a lot of insurance dollars padding his wallet).

The second-opinion dentist took another set of x-rays and *surprise* does not think stainless steel crowns are medically necessary. Yay! Both cavities are in the corner of the tooth and are not touching the nerve.

The moral of this story is: Speak the truth, even if you are afraid. Second, no matter who is analyzing your child, an opinion is an opinion. Period. Everyone’s got their own educated guess and it is beneficial to seek out another perspective if something isn’t sitting right with you.

I’ve never discussed trips to the dentist on the blog before. If Jake was nonverbal and four, I would’ve REALLY been out of my mind!

If you have any personal dentist stories, please share in the comments for other moms out there who may be going through a similar situation.

 

I have a hundred things going through my mind.

Even though my son is in the first grade, reading on a second grade level, and speaking beautiful, precious words, that little beast called apraxia continues to haunt us.

The last time I blogged, I shared the latest piece of Jake’s puzzle: histamine intolerance. I was also hopeful at that time I could add gluten and casein back into his diet.

In the fall, I tested casein and here’s what happened:

  • chronic stuffy nose that progressed into a cold with fever two times in one month (Jake never gets sick. Ever.)
  • wetting pants during the day
  • chewing on shirt collar and sleeves
  • hanging upside down on couch while watching TV or playing with electronic device

I tried to ignore these things, hoped they would go away, but then one day when he was coming down with the second cold and running a low-grade fever, he did something really strange.

He was sitting on the couch watching TV and all of a sudden, he started laughing hysterically. Oh good, he must be feeling better, I thought.

But then it didn’t slow down. Wild, hysterical laughter.

There was a commercial on … but it wasn’t funny.

“Jake, are you okay?” I asked. “What’s so funny?”

He  didn’t look at me, didn’t answer. Still, in a weird, funny trance.

He got up, staggered into the bathroom, pulled down his pants, and peed all over the place. On the walls, the toilet seat, out of control.

And the laughing didn’t pause for even a second.

“Jake! Jake! Are you okay?” I asked, grabbing his arm, shaking him.

Our eyes finally met and the laughing stopped just as quickly as it started. “Why were you laughing like that?” I asked.

He shrugged, gave me a confused look. “I was laughing?”

“Uh yes, you were,” I said. “Just now. Was something funny on TV?”

“I don’t know.” He pulled up his pants and walked out of the bathroom. With absolutely no recollection of what had just happened.

At that moment, I knew.

Even though I called the pediatrician and she got a kick out of this story and said he must have been sleep-walking. (At 3:00 in the afternoon with his eyes open).

I knew right then and there … dairy affects Jake’s brain and body in a negative way. And that experience scared me to death.

At that point, he’d been having 1/2 to 1 mozzarella cheese stick per day for about three weeks. That’s it. But just enough time for it to build up in his system. Even though his skin prick and blood test for dairy was negative last year.

He hasn’t had a drop of dairy since. And other than occasionally chewing on his collar, 100 percent of those symptoms went away.

Because of this experience coupled with the fact that he is doing excellent from a speech and academic perspective, I decided not to test gluten.

So, what in the heck am I supposed to do with this?

That’s why there’s hundred things going through my mind.

I believe my son has a three-pronged problem:

  1. IgE allergies to fish, peanut, and possibly egg
  2. histamine intolerance: a sensitivity to foods high in histamine that causes asthma, eczema, and moodiness (crying over every little thing).
  3. gluten and casein sensitivity: causes cognitive, speech, and sensory problems.

#1 is acknowledged and proven by our allergist.

#2 is acknowledged by a nutritionist in Canada who trained under Dr. Janice Joneja. (Histamine intolerance is a condition primarily diagnosed in Germany, Austria, and Canada and there are no “official” tests that provide 100% accurate results. An elimination diet is recommended where histamines are taken out of the diet and added back to see what the result is.)

#3 was suggested by our integrative medical doctor when Jake was four, but due to her busy schedule and poor customer service, I do not feel comfortable consulting with her moving forward.

Many people ask me: If you know what the problem is, if your child is symptom-free when you’re living in your crazy, healthy food bubble, why do you want (or need) an “official” diagnosis recognized by the general medical community?

Here’s why:

  • He is getting older each and every day; his future matters to me!
  • What “Mama says” doesn’t always fly as kids get older.
  • I don’t want 100% of the responsibility for diagnosing my child. I want help from a professional.
  • I want to make sure it is the best choice to keep gluten, casein, histamines, fish, eggs, and nuts out of this kid’s diet! What if keeping sensitivities out of his diet only makes his body become more intolerant of them in the future?
  • Certain meds contain his allergens/sensitivities and in order for him to have a safe medical/dental future, we must have an accurate diagnosis.

All of these things are screaming at me right now because Jake has two cavities that need filling … the dentist appointment I’ve cancelled twice already. The numbing med and the filling material terrify me. After all, this is a child who can’t even eat half of a freaking cheese stick and one that reacts to countless chemicals!

We need someone to back us. I need someone to acknowledge that the histamine intolerance and gluten and casein sensitivity are real issues. One week from today I have a consultation with Jake’s allergist. So cross your fingers he will help us.

I leave you with this video by Dr. Claudia Morris at Autism Canada in 2014. Syndrome of allergy, apraxia and malabsorption (SAAM) is the condition I suspect Jake has. It just has to be proven and dollars for clinical trials have to be available. It also looks like Dr. Morris is working on a new supplement for apraxia.

I am frustrated with the lack of official “proof” for this condition, but grateful that the building blocks at least exist. I also never lose sight of the fact that my child is speaking and out of speech therapy when so many are not. We all have our battles, this just happens to be mine.

Thoughts and comments are welcomed.

 

by Tara, Contributing Writer

Here we are! The holiday season has arrived (ready or not). In the midst of shopping, wrapping presents, long lines, pulling together travel plans, figuring out what to fill the stockings with, making cookies … well, you get it. Most likely, you are living the exact same chaos right now.

I’ve really been struggling the past couple weeks with what topic I should go with for this blog. Everything around me seems like it’s in “fast forward” yet my kids speech therapy seems to be stuck “on pause”.

Our 5-year-old son and 4-year-old daughter are both still in speech therapy twice a week. Same clinic. Same therapist. Same days of the week. Same sounds. Drilling. Over and over again. Think: Groundhog Day the movie.

The progress feels SO SLOW most of the time I want to scream.

But, as I was hanging up our holiday decorations, I found pictures of the kids from last year. They seem so little! It might as well be a million years ago. Then it hit me – hard.

Just one year ago, Christmas was a completely different story. I remember the anxiety and rivers of tears I felt as we got ready to take the kids to meet Santa. They could barely say anything. Definitely nothing close to a full sentence and their articulation (or lack thereof) made it next to impossible to understand them.

I watched other kids go up to Santa with such ease. Telling stories of why they wanted a particular train set or what exact doll they hoped to find under the tree. I tried to help our kids practice a few key words in the hope that Santa could at least somewhat figure out what they were saying?!? I felt a huge pit in my stomach.

Poor Santa sure tried, but in the end as was so often the case, I translated. The pit kept its place in my stomach.

A few days ago, our journey to see the big man in the red suit was 100% the opposite. Both kids were able to specifically tell Santa what they wanted and he understood every word! There was no need to step in and explain or ask the kids to repeat anything. THEY DID IT!

This time, my tears were punctuated with pure excitement. An example of how far they’ve come and how the hours and hours of therapy and practice at home are finally paying off.

Don’t get me wrong, there is still a long road ahead. In fact, our son’s re-evaluation recently took place. The results showed that his articulation skill in single words is at his age level. Wahooo! However, he still has numerous areas that are far from the finish line. Here are a few examples directly from his report:

  • Expressively, the patient demonstrated difficulty generating sentences when a given a word and asked to use that word in a picture description task.
  • The patient demonstrates difficulty formulating complete thoughts and sentences during therapy.
  • Patient continues to have difficulty using the articles of /the/ and /a/, using the plural forms ending with /s/ or /z/ sounds, using the regular past tense of verbs ending in /ed/.
  • When an adult initiates a topic for conversation, patient will answer, but it is usually short answers. When it is longer, it tends to be unconnected pieces of information which can be difficult to track. Adult needs to ask follow-up questions to understand and maintain the conversation.
  • Patient often loses articulation when trying to formulate a sentence or begins speaking quickly (leaving the sounds off the ends of words).

Before I get too depressed in listing all of these, I will stop. His therapist goes on for several more pages on the mountain of work that remains to be done. Ugh.

However, I am forcing myself in this holiday spirit to focus on the positives. Both of my kids have come an incredibly long way!!

Many people refer to this time of the year as the season of hope. No matter how you celebrate or what religion you may or may not follow or how many family traditions you have … take a minute and look back at where your kids or grandkids started on this journey and where they are right at this moment. Every step, as little as it may seem, will add up to bigger and bigger milestones. If you don’t believe me, just ask my kids. They sure have a lot to say these days ….

by Jennifer Jackson Linck, Contributing Writer

As our family wrapped up 2013 I was completely depleted and on the verge of depression. My 2-year-old son wasn’t talking and was showing signs of frustration and aggression. I was sleep deprived from his long recovery following a tonsillectomy. And I had a complete meltdown during his birthday party. Not my best mama moment.

I knew if I didn’t do something differently, 2014 would likely be just as depressing.

I bought a copy of Ann Voskamps book One Thousand Gifts and decided to shift my focus to the many things I had to be thankful for.

Thus started The Gratitude Project; a year of discovering glory in the mundane moments of motherhood.

I counted gifts – 1,100 to be exact – and I noticed the grey clouds begin to lift.

I focused on gratitude for 365 days and then the calendar rolled over to a new year and my son was diagnosed with Childhood Apraxia of Speech (and later Sensory Processing Disorder).

Would gratitude follow me on this new journey?

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My son Jackson started speech therapy when he was 18-months-old. At that point he only said one word – mama.

I had heard of Apraxia and questioned if that was the cause of Jackson’s silence. I researched the speech disorder and spoke to a friend whose daughter had been diagnosed with it.

I brought up my concerns with Jackson’s speech therapist, but she didn’t seem to think Apraxia was the problem. After all, he was really too young to diagnose. But I just couldn’t shake the feeling that Apraxia was in our future.

We switched speech therapists and within 6 months she diagnosed Jackson with Childhood Apraxia of Speech.

Instead of falling apart when she said Apraxia, I felt a huge sense of relief.

I saw the purpose behind that year-long focus on gratitude.

I didn’t see Apraxia as a curse; I saw it as a gift.

Gratitude changes your perspective.

I’ve learned when you stop practicing gratitude you become immune to God’s glory all around you.

Childhood Apraxia of Speech has opened my eyes to the miracles I might have missed had my son started talking when he was supposed to.

Each new word is a cause for celebration; a miracle in and of itself.

We don’t take a single word for granted.

I’m thankful that I can be Jackson’s voice until He finds his. That’s why I wrote a children’s book about Childhood Apraxia of Speech.

Jackson Finds His Voice came to me as we drove home from speech therapy one morning. Writing a children’s book wasn’t even on my mind. But the words hit me full force and I knew I had to write them down.

So I did; while Jackson napped that day.

I had to write about a little boy on a journey to find his voice.

Jackson Finds His Voice is a tool my son can use to share his story, it’s a way to raise awareness about CAS, and it’s my prayer that the book will give a voice to all the children who are still searching for theirs.

As I wrote the words I imagined sitting in Jackson’s pre-K classroom. I was reading the story so others could better understand my son.

I cried during the writing process.

Because our story is hard.

Because our story is beautiful.

Because I am inspired daily by the little boy who works so hard to speak.

Because I have so much to be grateful for.

Jennifer headshot

Jennifer Jackson Linck is the author of Bringing Home the Missing Linck: A Journey of Faith to Family, the eBook Trucks, Tantrums, & Trusting Him: Confessions of a Boy Mom and Jackson Finds His Voice, a children’s book about her son who has Childhood Apraxia of Speech. A graduate of the University of Oklahoma, Jennifer received a bachelor’s degree in journalism and spent several years working as a reporter for The Oklahoman. She writes about faith and motherhood on her blog www.jenniferjacksonlinck.com. Jennifer hopes to offer a glimmer of hope to mothers who aren’t quite sure what they’ve gotten themselves into. Jennifer is a Texan at heart, but resides in Oklahoma with her husband, John, and their son Jackson.

by Sam, Contributing Writer

No way!!! Has it really been an entire year since we visited CASANA? It went by in a blink.

When I look back at the ambition and optimism at that moment, my immediate thought is that it went by so quickly, I didn’t even have time to be sure we stayed on task. 

Our ultimate goal after visiting Dave Hammer was to integrate his goals into therapy for the year.

We gave it a few months and then realized that it was time for a change in therapists. We needed a fresh start with someone who had different ideas and who was open to integrating some of Dave’s strategies.

We decided to take the plunge with a local SLP whose name we had heard of several times over the years, but the cost per session had been holding us back. Despite her waiting list, she managed to fit us in sooner than originally planned. So the day before my C-section with baby number four, we went in for an evaluation.

Nervous but excited, we were accepted and placed on her schedule twice a week. She felt good about allowing Andon to drop to twice a week given the amount of time he’s spent in speech therapy over the last three years. I was hesitant, but listened since it was easier financially as well.

We were happy that she also respected our desire to incorporate Dave’s recommendations into Andon’s therapy plan. We were surprised when visiting Dave that “simple” things on the top of his list hadn’t been noticed or dealt with despite multiple speech therapists.

The following are some (not all) of the things Dave Hammer suggested we focus on:

1.) Vowel Distortion. When Andon was diagnosed with apraxia at age three, our SLP went through the vowels with him and was pleased. Long /a/ was a tricky one for him and he always substituted with a short /a/. Other than that, the vowels sounded good. We moved on and never considered revisiting them.

At first I was shocked when Dave pointed out vowel distortion, but once I was aware of the problem, it became obvious. Most of the vowels had a sneaky substitution of another vowel.

Dave suggested using Turtle Vowels – Easy Does it for Apraxia of Speech. Our new SLP printed the materials to go along with it and this was our “at home work.” This was another perk for us because we had consistently asked other speech therapists for at home practice, but rarely received it.

Man were these vowels tricky! We watched our SLP’s strategies for getting the sounds from him and we copied them. When Andon accurately made the vowel sounds, we focused on repetition. The vowels alone turned out to be quite a job.

2.) Omitted Consonant Sounds. Dave suggested we focus on omitted consonant sounds instead of substituted consonant sounds. He was right again. A word without a sound was much harder to make out than one with a substituted sound.

3.) Missing Functors. These are also called “function words” and Andon was specifically omitting the following state of being verbs: is, am, was. Dave gave us some strategies for adding missing functors back into Andon’s vocabulary.

Our new SLP had a plan in place for all these things and we were able to get started. We were also happy that she immediately began integrating some Kaufman, which had rarely been used with Andon.

Where Are We At Now?

Our speech therapist works hard with Andon. She fits a lot into her time with him, but also watches him for burnout and integrates play when needed. We have, for the most part, reached each of the goals implemented by Dave Hammer and continue to progress.

My suggestion to those of you years into therapy is to branch out when things get stale. Sometimes it’s simpler for a new pair of eyes and ears to get involved. Also don’t forget to revisit and review. These kiddos with apraxia can backslide at times.

Andon is progressing. It’s not a fast process, but he is progressing. He slows down when speaking and focuses on his words, sounds, and sentences in conversation consistently. I’m so very proud of him and reward him often for his hard work.

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One of Andon’s rewards for working hard in speech therapy.

I watch my beautiful little boy (don’t tell him I said that – lol – he’s such a boy that he hates the words beautiful and pretty and prefers we call him awesome) sit with such discipline and focus each week with his SLP despite the fact that he’s just tired of going to speech. I don’t blame him. He’s been doing it for as long as he can remember.

He consistently asks me when he’ll be old enough to stop going. I just tell him it’s his job to work hard at practicing his sounds and someday he’ll be old enough to graduate. I pray that only good things come from these experiences and that he’ll be a better person for it.

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