Jake's Journey with Apraxia

And the Friends We've Met Along the Way

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.

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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? 

by Amber, Contributing Writer

In my last post, I announced that Cason, my oldest with apraxia, had been dismissed from speech and is considered resolved. That same day I learned that Callen, my three-year-old with apraxia, was more than likely misdiagnosed. We walked into speech with two apraxia diagnoses and walked out with none.

Callen’s new therapists have suggested that he has low oral tone and not apraxia. There were many similarities between my boys up until a few months ago, which made it easy to accept and not question that they had the same diagnosis.

Low Tone vs. Apraxia

Callen can’t pucker, blow bubbles, move tongue certain ways on command, touch the top of his mouth with tongue, etc. And in the beginning, the speech errors he was making were consistent with apraxia. When given the Kaufman Praxis Test he scored as apraxic because he scored low in those areas and there was also a huge gap in expressive and receptive language.

Recently, I questioned that Callen’s speech progressed from November until January, even though he wasn’t in therapy. That just isn’t heard of with apraxia. The few times Cason missed a couple of weeks of intense apraxia therapy, he regressed. Callen was missing months of it, but was still improving on his own.

Also, the speech errors Callen has now are consistent. Whereas with apraxia, the errors tend to be more inconsistent. For example, when he makes an error with a word, he makes the same error every single time. But with apraxia, the error can change each time the same word is said.

Callen’s case is truly a case of being diagnosed too young. Many therapists will tell you they don’t like to diagnose apraxia before three years old because of this very reason. But at the time, everyone felt confident it was the right diagnosis. I felt confident in it… until he started making progress without therapy.

When he was diagnosed with apraxia a year ago at the age of two, the actual diagnosis probably should have been low oral tone, severe expressive delay, phonological disorder, articulation disorder.

plan aCallen Today

In January, Callen was given several evaluations. His results showed him within normal limits for his age for expressive language, receptive language, oral language, and auditory comprehension. His articulation is below normal range, which is why he’s hard to understand.

On the Kaufman Praxis Test, he scored low for oral motor (caused by the low tone not apraxia) and within normal limits for everything else.

Callen has low tone only in his mouth, whereas my older son has low tone in his body. Low tone isn’t about strength, it’s about how the muscles are when in a relaxed state and how much energy it takes to move them. It’s still neurologically based, as is apraxia. Our therapist said to think of a runner or a body builder. They can’t just go out and do those things without having a good core. Callen doesn’t have a good core in his mouth, and speech was hard to develop and slow to develop.

In Callen’s case, his jaw and tongue move as one. This shows up when he is eating. I didn’t realize it until it was mentioned. He always chews with his mouth open, and moves his food around in an odd manner when chewing.

Also, Callen sounds very robotic and staccato when he speaks. The SLP said Callen isn’t getting a good breath, so he’s likely taking quick breaths or trying to hold his breath between words in order to make it last longer to make longer sentences.

TalkTools for Low Tone

Callen’s therapist is going to be using a program called TalkTools to train his mouth/jaw/tongue muscles. We are familiar with TalkTools from Cason using the program with feeding therapy to learn to chew and move his tongue.

straw

We have been using the TalkTools horn and straw protocols for four weeks. We do the exercises every day. I have already seen improvements. In the beginning, Callen would try to use his teeth to stabilize the straw in his mouth when drinking. Now, he uses his lips most of the time. He also could only blow on the horn three times and get a good sound. Now, he can blow 20 times in a row and get a good sound. He’s able to sustain his breath longer. I’ve noticed his speech becoming more fluid because of this.

horn kit, talktools

Callen’s SLP is also working on articulation in regards to speech development.

Right Where We Belong

I’m a firm believer that God always has a plan. As nervous as we were to leave San Diego and our wonderful therapists, it turns out Charleston is the place to be for Callen. The speech center we are going to has therapists actually trained by the creator of the TalkTools protocols. She is from Charleston and has visited the center. While San Diego was the right place to be for Cason’s speech, I have full confidence that Callen is going to flourish in Charleston getting the exact therapy HE needs.

by Katie, SLP, Contributing Writer

I want to join the celebration and give a Hip Hip Hooray for Nancy Kaufman’s Speech to Language Protocol (and accompanying treatment materials). I am currently in the process of watching the three-part Instructional Training Video for the K-SLP provided through Northern Speech Services. While I have used the picture cards in Nancy’s Treatment Kits for years, I have been excited to increase my understanding of the bigger picture. Let me share some of my takeaways so far!

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First of all, I found it interesting and am in total agreement with this idea expressed by Nancy: Although a child may have difficulty imitating oral movements (e.g., sticking tongue out, puckering lips), these movements will not be addressed separately in therapy. Instead, the focus of therapy will be on achieving imitation of specific consonant and vowel sounds in isolation and within various syllable shapes. In other words, movement of the oral structures (e.g., jaw, lips, tongue) will be addressed only within speech sound production and not outside of speech production.

Next, I loved Nancy’s tips for using the K-SLP with children on the autism spectrum: It may be best NOT to start with the simple reduplicated consonant-vowel-consonant-vowel words (e.g. Mama, BaaBaa) so we do not inadvertently teach these children that all words are produced twice. Additionally, parents and therapists should be careful not to overuse the word “say” as children with ASD may begin adding this word prior to all words they are taught.

Another important mention is that a child with suspected or diagnosed CAS who is not yet able to imitate any vocalizations could be trained FIRST using the K & K Sign to Talk program which bridges sign language to vocal imitation.

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It was comforting to hear Nancy suggest that it is sometimes appropriate to move away from targeting specific sounds (especially when working with older children who have become resistant to sound training) and move toward functional language targets. These target words and phrases would be of high interest to the child as well as maximally useful in communicating needed messages for effectively functioning in their daily routines.

Something of which I was not previously aware is that Nancy’s Workout Book includes activities for moving beyond single word production into higher level expressive language tasks. Expressing the function of objects, retelling stories, and improving simple grammar are a few examples. The cool thing about using Nancy’s book is that these skills can be addressed while simultaneously controlling the motor complexity of all words within the target phrases/sentences.

workout

Underlying Nancy’s treatment method is the idea that we as therapists should aim to teach children with CAS simple approximations of words based on their current repertoire of sounds and syllable shapes. As their skill levels increase, these approximations will gradually move to more intelligible productions. Nancy is not afraid to temporarily use “incorrect” productions of words, thus moving children more quickly to a place of true communication versus a place of continual frustration (resulting from working too hard to perfect each word). This last point was a welcome reminder and something I will immediately put into practice with one of my clients.

Speaking of this sweet client, allow me to conclude today by imparting some knowledge I’ve gained through experience (outside of technical, theoretical, and educational knowledge). Sometimes we try to implement specific programs and methods to no avail. Then we do something silly and spontaneous, and BAM a new word or sound combination pops out of that sweet little mouth prompting us to do cartwheels and scream with excitement!

This client, a three-year old little girl we’ll call Suzy Q, has lots of individual consonants and vowels in her spontaneous repertoire. However, she struggles to produce even simple consonants in a variety of CV combinations. For some reason, she has particular difficulty producing CVs containing “ee” (e.g., bee, dee, tee). Her attempts usually sound like “ee” without an initial consonant sound. Suzy’s mother and I have unsuccessfully tried various tricks to help her achieve this skill.

Trying to stay true to the principles I’ve learned about speech sound development and CAS, I often stick to working strictly on CVs containing simple consonants during much of Suzy’s therapy sessions. However, I also try to honor Suzy’s mother’s intuition and use a portion of each therapy session to work on more difficult words, such as CVCVs or other highly motivating words.

Despite Suzy’s difficulty producing “tee” or “dee,” we were running through the C1V1C2V2 pictures in Nancy’s Kit 1. Lo and behold, we heard Suzy say DEE as we broke down a two-syllable word into smaller parts. I wish you all could have seen the look of surprise and excitement her mother and I shared! In that moment, Suzy added “dee” to her repertoire of syllables and it STUCK even a week later. We were also able to transition to “tee!” SLPs and moms alike know that small steps are HUGE VICTORIES.

Kaufman-Kit-1-Cards---USE

Similarly, Suzy was able to break out of motor limitations exhibited when producing sounds in varied syllable shapes to quickly add a very close approximation of “Bubble Room” to her spontaneous vocabulary. She is highly motivated by a bubble tower in our sensory gym and initiates communication by frequently requesting this activity.

So I will continue to LIVE and LEARN through both experience and continuing education as I surge forward to help as many sweet Suzies as I am able.

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