Jake's Journey with Apraxia

And the Friends We've Met Along the Way

There is a poem a friend gave me in my mid-twenties when I was going through a break-up. Some of you may have heard it before as I have seen it many times since then …

Having a child with multiple food allergies, eczema, asthma, and apraxia has brought many changes to my life. A lot of goodbyes. A lot of expectations shattered. A lot of disappointment. But on the flip side, also immense joy. Overflowing appreciation and love. Learning that you can find happiness even when you can’t have what you know will make you happy. Facing the hurt, mourning the loss, and then learning to make the best of a bad situation and moving on.

This past week my family and I went to the beach for spring break and I found the words of this almost forgotten poem chanting through my head again. But this time, at forty years old, happily married, hopefully with a little wisdom under my belt, the words became more than “just” a break-up poem.

You see, I was forced to say goodbye to the beach. And I love the beach. A lot. It makes my soul happy to get sandy, find shells, build castles, read and then take a nap, all while watching my babes splash contently in the waves.

But last week, Jake’s fish allergy got in the way of all that and my peace was replaced with anxiety. Itchy, burning skin, inflamed eczema heels that make my boy cry when sand gets caked in them, and counting down the seconds until his body says enough is enough and we have to make a break for the pool.

While I was coming to grips with all of this, I caught myself resentfully glaring at the other children on the beach, running and playing without a care in the world. Their parents relaxing with a book, a nap, or simply lost in their own thoughts. Oblivious to the blessing of having a child who can live in this world unaffected; a child who can enjoy a day at the beach without having to worry about the ailments that force him to live life differently.

But then it dawned on me … Everyone has “something” they have been forced to say goodbye to and that same “something” other people take for granted because they don’t know any better.

After all, wasn’t it just a couple of years ago when I stood in that preschool class full of chatty children and felt these same emotions? The sting of being different? Saying goodbye to the norm? Disappointment? The tears that blur your eyes, that “why me” feeling, the jealously, the longing for what they have that you don’t, and the anger that they have no clue how fortunate they are.

The first two days of vacation, I read my friend Jennifer Anderson’s new book Glitter, which is about her daughter’s battle with cancer. It is also the story of how little Lily chose to live a “YES” life in remarkably difficult circumstances. At one point in the book, Jennifer mentions how difficult it was for her to say goodbye to her fashionista daughter’s hair that was lost during chemo … a girl whose nickname was “Style” Anderson. She writes …

I have to admit that having hair is something I took for granted. I think we all do until we are faced with this kind of situation. Never again will I complain about a bad hair day! Never again should you wish for curlier or straighter or longer hair. When a thought like that pops in your head, turn it immediately around and just say “thank you” for the hair God gave you!

This life is not free of pain and we’ve all got something we hold near and dear that we’ve been forced to give up. And I’m convinced even our friends who seem to have it made with their on-the-surface perfection, have to have these same feelings.

Whether it be loss of hair from chemotherapy, breasts from a double mastectomy, silence from apraxia, divorce, an empty bank account, loss of life, infertility, and yes, even a less than ideal day at the beach. But what other choice do we have than to keep moving forward and making the best of a bad situation?

In my particular circumstance, making lemonade out of lemons, is realizing that goodbye is not forever. It may possibly be for my child, which is a whole other emotion to process, but chances are, I will be able to spend a few more days at the beach. It is also realizing that I can be happy doing other things on vacation. Like going to the pool, playing tennis, taking the boys to see a Blue Angels air show, or putt-putting. These are things we enjoy doing as a family and are physically and mentally able to do.

In your own struggles with apraxia, etc. what have you had to say goodbye to? How have you coped?

I’ve been on a rant lately about sugar.

Maybe I can chalk it up to having a bad case of PMS this month. Or maybe it’s as simple as hearing Maroon 5’s song “Sugar” a few hundred times too many. Perhaps I’ve spent too much time with young boys in the tee-ball dugout. Boys who like to stand up on the bench, slam their bats on the concrete, or climb the fence. Or maybe it’s the new Lunchables Dirt Cake that my eleven-year-old son keeps trying to sell me on. Or it may simply be this little face that begs several times a day …

Ya’ll. I really can’t wrap my brain around all this sugar.

And I wonder if as a society, we are truly underestimating the negative impact sugar has on not only us, but on our vulnerable children. I believe it is especially important to consider for children who have apraxia and who I think, have a higher susceptibility to inflammation.

When Jake was four, I took him to an integrative/holistic MD to explore the possibility that diet and/or nutritional deficiencies were negatively impacting his body and that apraxia of speech might just be a “side effect” of these things.

Part of his extensive diet/supplement program was to limit sugar intake to 12 to 20 grams per day. In other math, this equates to 3 to 5 teaspoons each day. So for the first time in my life, I started inspecting how much sugar was in the food that my child was eating. I was blown away at how quickly 20 grams can be eaten up!

Consider these facts from the May 15, 2014 article by the Environmental Working Group (EWG):

  • The 2010 Dietary Guidelines for Americans issued by the Department of Agriculture and the Department of Health and Human Services recommends 5-to-15 percent of calories from added sugars.
  • 10 percent limit for added sugar also represents the consensus view of the WHO.”
  • “Consuming 10 percent of calories from added sugars corresponds to eating about 12 teaspoons a day for an adult and 7 teaspoons for an 8-year-old child.
  • In March 2014, “The WHO published a draft guideline stating that reducing sugar to less than 5 percent of total calorie intake would have additional public health benefits.”
  • “The American Heart Association’s consensus is for just four teaspoons of added sugar a day for children, which also corresponds to a limit of 5 percent of calories.”
  • “Many children are consuming double or even triple the recommended maximum.”

What does this look like in real life?

These are just a few examples. Again, we are supposed to be shooting for 4 teaspoons a day or 16 grams. (1 teaspoon sugar = 4 grams). My assumption is that most kids eat their required sugar grams (and probably more) in breakfast alone. I know Jake did when we first started this journey to wellness two years ago. It would also be my guess that kids are eating far more sugar than even double or triple the daily recommended guidelines.

We love the following lower-sugar alternatives: Van’s, Annie’s, Enjoy Life, and Back to Nature.

In conclusion …

I’d like to put a disclaimer in here that my family and I are not perfect. My kids still get their sweet tooth on, they just do it with products that have a lower sugar content. If you know me in real life, you’ve seen my kids with a Ring Pop hanging out of their mouth or chomping on Skittles at the ball park. It is a treat, not a daily thing. I also have a bag of Dark Chocolate Almond BarkThins (yum!)  stashed in my desk drawer that I indulge in a couple of times a day to boost my plotting brain power for the novel that I’m working on.

I really think moderation is the key and that simple substitutions can be made to lower overall sugar intake. I also think being mindful of sugar consumption is imperative to the health of our children. I wish a study would be done on what happens to a child’s health and cognitive ability with they eat five to ten times the daily recommended sugar allowance. That’s why as adults, it’s okay for us to drink a margarita or two, but if we were to drink a bottle of tequila we’d be flat on our face.

Related Posts:

Inflammation and Apraxia

by Amber, Contributing Writer

Just when you think you’ve got a good grasp on the challenges your children have faced and are ready for smooth sailing, life gives you another twist.

Let me back track. In the past, I’ve written about two of our sons, Cason and Callen. Cason recently ended speech therapy after his apraxia was considered resolved. Callen lost his apraxia diagnosis when it was decided he actually has low tone and articulation issues. Life seemed a whole lot easier the day I walk out of the speech office with that information. I knew we still had work to do and challenges to face, but it was going to be different in comparison to what we went through in treating apraxia.

Then it all changed. Almost two weeks ago, our youngest son, Caden, was diagnosed with a severe peanut allergy.

About a month ago, Caden (14 months old) got a hold of a spoon that had peanut butter on it. He didn’t eat it, but did smear it on his skin. After I cleaned him up, I noticed hives beginning to appear. I tried convincing myself that it was coincidence. He does have very sensitive skin and deals with eczema. I watched for any other problems, but he cleared up within an hour. A week later, my husband had the same situation happen with Caden.

We made an appointment with the allergist. Two weeks ago, he tested positive for a peanut allergy.

This diagnosis hit me harder than the apraxia diagnosis. I remember being very scared and worried when our oldest was first given an apraxia diagnosis, but I also remember feeling like it was something we would overcome. We could treat it. We could find the best therapists, best treatments, and beat apraxia.

I didn’t feel that way with the peanut allergy diagnosis. I felt helpless and like there was nothing I could do to make it go away. I felt hopeless for my son and the diagnosis seemed so final. I kept trying to tell myself other people are dealing with things in life that are much worse than a peanut allergy. I tried to make light of it, but I couldn’t.

moments

Stages of Grief:

I finally realized I was going through the stages of grief. As silly as it seems, I was grieving over the news of Caden’s allergy.

1. Shock and Denial- I went through this after the two exposures to peanut butter. I knew enough about peanut allergies to know that it was the peanuts causing the rash on his skin, but I wanted to believe it was coincidence.

2. Pain and Guilt- I immediately felt this the day I drove home from the allergist. What had I done wrong? Not just to cause the peanut allergy, but what had I done wrong to have another child with another special need? What was I doing wrong that was causing my children to suffer and struggle? The guilt it hard. It still sneaks back in late at night as I’m trying to fall asleep.

3. Anger and Bargaining- This came several days later in a way you might not expect. I was angry that Caden would have to deal with a peanut allergy. I was also angry because it was having an effect on my older son, Cason.

Cason (our 4-year-old) was diagnosed at 18 months old with Sensory Processing Disorder and started feeding therapy for oral aversions. To date, he eats a total of ten different foods consistently. Ten. The problem…half of those contain peanut butter.

So now, we have a child in the house with a severe peanut allergy and have to remove all forms of peanuts from the house. That made me angry. We worked hard to get our child with SPD to eat peanut butter. Now we have to take it away and start over.

Give him almond butter. Give him Wowbutter. Give him Sunbutter. Give him No-Nut Butter. It just isn’t that easy. Those that deal with SPD know that any change in texture, color, temperature, consistency, smell, etc. can make a child with SPD shut down. So far, that has been the reaction we get when we try the other “butters” with Cason. We are trying to find other sources of nutrition, but it has been such a struggle.

There was and is a lot of anger in dealing with the fact that the peanut allergy doesn’t just greatly affect one child; it greatly affects two of our children.

4. Depression, Loneliness, and Reflection- I felt alone and overwhelmed as I stood in the store trying to buy Easter goodies. Reading label after label stating peanuts, may contain peanuts, made in a factory where peanuts are processed. It was overwhelming. Something that is supposed to be fun was turning into something that gives me anxiety. What if I misread the label today or tomorrow or a year down the road? I had to hold back tears so the other shoppers wouldn’t think I was crazy.

5. The Upward Turn- I long for this stage. I feel it coming. It comes in waves.

6. Reconstruction and Working Through

7. Acceptance and Hope

Those last two steps will come. I have amazing family and friends that will help me get there. I have several friends that have children with peanut allergies, and they’ve been amazing at giving me advice and letting me know that what I’m feeling is completely normal. I’ve been here, to Tori’s blog, so many times in the past two weeks reading all of the posts under the Allergies, Eczema, and Asthma tab.

My post today isn’t about apraxia, even though this section of the blog is dedicated to apraxia. I feel that when we first get a diagnosis for our children, no matter what the diagnosis, we all go through a range of emotions. The only other people who get those emotions, are those that have gone through it before. That’s why we read blogs by other parents. Why we join support groups. Why we share our stories. Thank you for letting me share mine.

by Jayme, Contributing Writer

Hi everyone : ) So happy to be here and connecting with other families also journeying through CAS. I am a happy and blessed mother to four kids (4, 3, almost 2 and 7 months). Our days are busy, crazy, happy, loud and most importantly beautiful. This is the story of our only son, the sweetest little boy you’ll ever meet.

Tyson was born December 28, 2011 and was 10 lbs and 4 oz. He was the most beautiful little boy with thick dark hair and cheeks to die for. Tyson was sitting at 5 months and walking by 9 months. He loved to jump, run, dance and be silly. Before he was one he made a few sounds and even said mama!

Around 15-16 months, he wasn’t saying anything (not even the few words/sounds he had said before) and I began to get worried. Our firstborn Payton was talking by 16 months, so I knew he should be able to say something, anything…

Tyson tried to speak, but no words were coming out. He attempted to communicate with his version of talking, which were grunts and random sounds. I would try and get him to imitate words, but he just couldn’t get the sounds to come out. He was so frustrated that no one seemed to understand him.

At Tyson’s 18th month doctor’s appointment I mentioned to the doctor that I was worried about his speech development. They said not to worry, boys speak later, he was still so young etc. and we could discuss this again at his 2 yr appt. I tried to take that in, but something in me knew it wasn’t right.

I felt horrible and immediately turned to the internet (haha) for help. I found many other parents going through similar situations and came to the conclusion that we needed to contact the states Early Intervention Program (EIP) and visit an Ears, Nose and Throat Doctor (ENT).

After his EIP evaluations, it was determined Tyson did not actually qualify for the program by his scores, but because of the complete lack of speech, he was able to get in. We had an amazing therapist coming to work with Tyson once a week and also counsel our family on skills that would help Tyson.

At Tyson’s ENT appointment, they found quite a bit of fluid in his ears which probably contributed to his inability to mimic our words. It was determined that he would need ear drainage tubes implanted to clear the fluid out.

It was an outpatient surgery for his ear tubes, which went great and he passed all of his hearing tests during the follow-up appts. Great, “now we know” with certainty that he can hear us, but why couldn’t he speak?

A few months passed (with no huge improvements) and after another speech evaluation we heard the term apraxia for the first time. Neither Billy nor I had ever heard of apraxia. After being told not to research it online, I immediately researched it online (lol). I was definitely not prepared for what I read.

I was devastated. Our poor sweet boy was literally living in a speech prison. Here he understood everything, with complete thoughts in his head, but could not verbally communicate them to us. I also found out that apraxia is not a developmental disorder. Tyson would not simply outgrow CAS, he would need intensive therapy to speak one day.

After hearing/learning of apraxia, we immediately got started helping Tyson. After a few months with a local speech therapist and endless hours of research we found a well known and phenomenal facility that focused on apraxia. It was called Foundations Developmental House, owned by Lynn Carahaly. She developed a program called the Speech-EZ Apraxia Program that was doing amazing things for so many children. We contacted them and set up an appointment to visit. We immediately felt at home and knew this was the place for Tyson. And oh yeah, it was a two-hour round trip from where were living at the time.

apraxia

 As destiny would have it, Billy and I were already shopping for a new house and after learning about the Foundations Developmental House, we knew we needed to move as close as possible so that we could get Tyson the help he needed. It was a big move and a huge step, BUT it was without a doubt the best decision we’ve made as a family.

After moving we started speech therapy before we were even unpacked! Tyson started going 3 mornings a week, an hour each day. Tyson’s SLP Anna-Alyse, was literally sent from God and I can’t even begin to explain how grateful I am for her.

The first few weeks were a HUGE challenge. Tyson didn’t want us to leave the room and definitely wanted no part in sitting at a table for intensive therapy. After a while though, he quickly adjusted and started stopping us from leaving the lobby. After a few more weeks, he started sitting down at the table and getting work done.

Presently Tyson continues speech therapy 3-4 days a week and has grown more than I could imagine. He can say all sounds, a few words and his word imitating is getting stronger by the day. Hearing him call me mama again after over a year was a moment I will never forget.

There are very tough days and moments I want to cry for Tyson, but I remind myself that he is perfect. Our hope is that in the next few years he will find his voice and start kindergarten with typical speech. I can only hope he knows that we hear him, we get him, and we love him. I am so proud of him and of the strength he possesses. He is our warrior man, our “Champion” and I can’t wait to hear him talk my ear off one day.

by Sam, Contributing Writer

As of last week I intended to do this week’s post on our current path and newest efforts. In addition to our therapists working to integrate Dave Hammer’s plans, our newest effort just happens to be listening therapy. Since there was just a write up on it by another friend I considered changing, but then thought it might be a great time to post on it. Maybe multiple experiences will be helpful to others.

Our occupational therapist recommended listening therapy in November. I was immediately up for it because Andon likes music anyway and it seemed like a simple enough activity to integrate into the day. I’m always up for easy ways to attempt to improve progress. With some research from my husband and concerns on how to get insurance help with the expensive headphones, we did drag our feet.

It wasn’t until about a month ago that we finally got the headphones in the mail and started the therapy. We were able to order our own headphones through the company, but rent the discs from our OT office. 

The goal is to listen for 30 minutes twice daily. I typically set up some sort of ‘center’ to keep Andon occupied twice a day or do it during meal time. These headphones allow him to hear what’s going on around him so he’s not secluded if he has them on at dinner.

Our experience so far has been that Andon is absolutely ‘done’ after 20 minutes. He says his ears are hot and he wants the headphones off. Since 30 minutes is our goal I buy as much extra time as I can and then let it go so that we don’t produce a bad experience. We also have trouble getting it in twice a day every day. We are a busy homeschool family so it just doesn’t flow to get in two 30 minute sessions of listening, but we’re working on that.

The activities I integrate are things like sand, dry rice play, play dough and busy bags. (Busy bags are a fun collection of homemade Pre-K activities that we made with a group of friends awhile back. You can do a Google or Pinterest search if interested.) I’ve also recently pulled in some of the snow as a center since we’ve had a ton of it here lately.

So far I’m ultimately appreciating the scheduled in center time. There have even been times that I noticed Andon ‘melting’ and overstimulated and I am able to use the therapy as more of low key sensory effort which typically helps calm him.

As far as progress/therapy is concerned, we’ve been at a standstill for a while.  I’d say a month and a half. One therapist has had other obligations and illnesses and has cancelled quite a bit, while our new therapist recently had a baby. To be honest, we’ve enjoyed the small break a little bit despite the concern of taking a ‘break’. However, I have noticed better annunciation efforts in some words as well as some more multi-syllabic words just over the last few days. No improvements in conversation.

Can I say for certain that these small improvements are from listening therapy? Of course not, but we’re committed to trying it and intend to stick to it for a while. Just as Tara mentioned in her post there’s currently no magic. Yes, I too consistently hope for something magical, but I can find the silver lining in it and will continue using the program with hopes that something might click and improve things overall.

Thank you Sam for sharing your experience with listening therapy. I personally think this type of therapy is fascinating and we’ve had three posts on this subject since November!

Have any of you moms or SLPs out there used listening therapy for your kids?

We’d love to hear your experience, suggestions, progress, etc.  

by Tara, Contributing Writer

Two months ago, we started The Listening Program with our four-year-old boy. We had such high hopes! I had read so many positive reviews and couldn’t wait to get started.

So far NOTHING different.

I keep looking for any tiny sign … any tiny difference … any tiny glimmer of improvement.

Our son does the program through his occupational therapist twice a week and then we do it every day at home as well. (I’ve been a drill sergeant about it at home).

We are continuing with it for now, but as I’ve discovered a thousand other times on this journey, what works for one child certainly may not work for another.

Of course I knew going into The Listening Program, just like any tool or any set of cards or any type of program, there are no guarantees. There is definitely no magic wand when it comes to apraxia (or sensory processing disorder).

Do you know how many times I’ve dreamed/wished/hoped for a magic wand, though?

Haven’t we all?!?

My daughter is very into princess stuff right now. Everything is princess. Can’t I just borrow one of her wands and make this all better in an instant?

Clearly we are not in a fairytale.

So we keep trudging forward. Both of my kids are working very hard on /f/, /sh/ and /s/ sounds at the moment. I’ve been making all kinds of matching games that we do every night after dinner. When they get a match, they have to say the word twice (once for each card).

tara blog pic

I’m always searching for new ways to keep the kids interested, if only for four or five minutes at a time, so we can drill words.

Believe me, many times there is also just plain old bribery. When I was pregnant I SWORE I would never resort to bribing my children. HA! HA!

Both kids also have a list of 10 weekly words from their SLP’s that we go through at least once a day. When they’ve practiced their words, they earn a sticker. If they are antsy or don’t really try with their words, they don’t get a sticker. I’m firm on that.

The system has worked better than I expected! Let’s be honest the last thing most kids (or at least my kids) want to do is sit down and drill words/sounds. Not exactly a rip-roaring great time.

But, once the kids earn 10 stickers they get a reward and that has been a huge motivator for them. Sometimes for my son it’s as simple as taking a ride with Daddy on the metro train downtown. For my daughter, it’s often painting her fingernails with purple sparkles or picking what song we get to listen in the car first.

Another day, another round of ideas to add some fun into a situation that feels like a never-ending marathon.

Here’s my little guy three years ago sporting some pretty fabulous hair for Dr. Seuss’ birthday …

At that time, he was three years old and things were much different from they are today. His enthusiasm told me he was doing back flips inside for the day ahead when his voice could not. I initially published this post in 2012, just a few months after Jake received his apraxia diagnosis. Today I share it again …

In honor of Dr. Seuss’ birthday, I decided to blow the dust off of “Hop on Pop” and read it to Jake. He loves books and I read to him every day, but we had never read these books before. Don’t get me wrong. I love Dr. Seuss and the quirky rhymes and silly pictures, but “Hop on Pop” has just never been engaging to me, a thirty-something. In fact, after mentally reviewing the kids’ library last week, it dawned on me that I have a history of stocking the shelves with books that I would find entertaining.

What’s the purpose of reading a book after all, if it doesn’t have a beginning, middle, and end?

hop on pop

But last week, when I opened “Hop on Pop,” I read it with a brand new set of apraxia mama eyes. As I read the first sentence in this book to Jake, his eyes lit up and he gave me a big grin as if to say, ‘Hey! I know these words!’

I suddenly realized that when your child has a tiny vocabulary, reading words that he can actually say is a huge deal. No other books that we have been reading come close to competing with this Seuss classic. Not only are these words simple for beginning readers, they are ideal for beginning talkers, as well.

The following words in “Hop on Pop” coincide with the words that Jake is currently practicing in speech therapy: up, pup, house, mouse, ball, wall, day, play (pay), night, he, me, him, bee, three, how, bed, ned, pat, sat, hat, no, don’t, dad, bad, had, hop, pop, and bit. What a fantastic way to strengthen the words that he is working on without flashing a card in front of his face!

Fortunately, Jake is a lot more parrot-like these days and if I break sentences down in this book, he can repeat most of the words one by one. Reading this book, I also felt a renewed sense of hope and motivation …  If he can repeat the words, maybe – just maybe – one day my boy can also learn to read these words.

This post is extra special to me because Jake is in kindergarten this year and is leaning how to read.

What about you guys? What are your child’s favorite Seuss books? 

Follow

Get every new post delivered to your Inbox.

Join 1,061 other followers

%d bloggers like this: