Jake's Journey with Apraxia

And the Friends We've Met Along the Way

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.

Kelly Dorfman presented one of my favorite all-time apraxia analogies in the book “What’s Eating Your Child?” She correlates that learning how to speak is a lot like learning a fancy dance routine. Some people are naturals … from day one, the moves come easy and they require minimal practice. But for others, the twists, turns, and dips are far from second nature and they have to do the routine over and over again before they finally get the motor movements right.

But, eventually, guess what? I think we all know how this story ends. Once a person’s feet finally learn the routine, they are able to pull off the dance beautifully. Yes, some are still “better” than others, but all have their own version of best.

When I read this analogy two years ago, it made me view apraxia differently. This simple comparison changed how I reacted to the sometimes daily face plants of speech errors/regression and even how I coped with the victories. The stumbles and falls didn’t seem so overwhelming because my focus was on the end result. The progressions that sometimes seemed to take forever, eventually came – step by step – through repetition and practice.

I leave you today with two challenges:

1.) Watch the video of Amy Purdy’s 2014 final performance on Dancing With The Stars and then read this article. Why do you think this winter Olympics medalist who lost her legs was able to evoke such deep emotion in people? What made her so special? Why do you think there wasn’t a dry eye in the room that night?

https://www.youtube.com/watch?v=A-gD4OxoOwc

2.) Grab a partner – whether it be a husband, boyfriend, friend, child, or pet – and challenge yourself to learning an improvised (or advanced!) version of the dance in Ed Sheeran’s video of “Thinking Out Loud.” Love. This. Song. If you have a man in your life, he’ll probably be zeroing in on the girl dancing around in a negligee dress, but ignore him. Stay focused. Are you a natural? Do you think there would be a possibility you could pull off this routine if you practiced every day? Did you get frustrated? Do you laugh at your mistakes? Isn’t it really hard to keep up?!?

https://www.youtube.com/watch?v=lp-EO5I60KA

Happy Valentine’s Day! May your weekend be filled with faith, hope, and love.

by Sam

At about 18 months old when my genuine concern for Andon’s speech and other challenges set in, I began living a roller coaster of worry, followed by high stress with sleepless nights of research. These spells were typically followed by some sort of specialist with a plan, in which case we exhale and hope that this time the plan will be miraculous. Needless to say, we usually ended up in a rut with some level of disappointment.

We live in a small town where we have seen several SLPs over the years. There just isn’t a lot of education and information pertaining to apraxia here despite the fact that our therapists do have some experience with it. It’s not that we’ve been completely unhappy with all of our SLPs, but often months go by without progress and then we have to start researching and pushing on our own to get the ball rolling again.

We’ve considered heading to Kaufman Children’s Center several times over the last couple of years, but for various reasons it never seemed like the perfect fit. We attended the CASANA conference in Nashville last year where we met Dave Hammer. My husband attended several of his seminars and tremendously appreciated his personality, passion, and experience. He suggested I skip my last CASANA seminar and see Dave with him.

Dave-Website-Banner-Cropped

I was hesitant to join in his excitement. This was my husband’s first real hands-on experience and I saw the excitement in him that I’ve felt so many times in the past only to be let down. Being a stay at home mom, I typically do the research, make the calls and plans, and then implement new ideas. But I went, and also really enjoyed his speech. We had a meeting with Mr. Hammer and planned to pursue a trip to see him in September.

Life did its usual and we had to move our trip to December, but we decided to dive in and make it happen. I was nervous to say the least. We planned a sitter for our other two children and planned the trip to Pittsburgh. Andon has never traveled well and his sensory issues really surface with travel, new places, and new people. We drove straight through for nine hours with just a few small stops. With plenty of activities in hand Andon was an outstanding traveler. Answered prayer for sure!

We arrived, settled into the hotel, ate dinner out, and then relaxed with Andon at the hotel in hopes of keeping him comfortable and calm. We talked with Andon about what to expect over the next couple of days. I’m pretty sure he was convinced that Dave Hammer was a super hero given his last name so he became excited.

We scheduled two days of 2.5 hour sessions with Dave Hammer. We attended our first session the following day. We had sent in information about Andon prior to our visit, which gave his history of health and speech as well as a description of his personality and interests. We entered the speech room which was filled with toys of interest to Andon! Of course that helped the transition.

Mr. Hammer introduced himself, shared some toys with Andon, and then spoke with us. This was perfect to get Andon acclimated and comfortable. After speaking with us, he showed Andon the other side of a two-way mirror where we would watch them play. To my surprise my son, who stays with no one, walked into the speech area alone with Dave Hammer!

We watched as he implemented an informal evaluation to gain the information that he needed. It was not a constant sit down, drill type, pencil and paper evaluation. He gained, in two and a half hours, the information that he needed to create a diagnosis, prognosis, written report, and plan of action for Andon. He also observed Andon playing with us to confirm his carry over and ability in his comfort zone. Dave Hammer also managed to get multiple sounds that we’ve not heard from Andon.

The following day we observed another two and a half hour session. This time Dave implemented therapy strategies that would produce the best results for Andon. He videoed these strategies, as he did them, to have as a resource for home and for our SLPs. Andon was pretty well ‘done’ at this point but Mr. Hammer’s ability to keep him on task without producing battles was quite impressive.

Dave then spoke with us about the report he was writing up and what our current goals should be. He confirmed our apraxia diagnosis, which was a strange relief because we’ve had some challenges with diagnosis in the past. A diagnosis challenge causes problems in therapy strategies as well as with insurance.

Now we are excited to have provided our current speech therapist with the reports and videos provided by Dave Hammer. We are also excited to have found an additional SLP who is inexperienced in apraxia but sweet, intelligent, and eager to study the reports and videos to implement weekly therapy with Andon. Our visit to CASANA was a wonderful and comforting experience. I would certainly recommend it to anyone who is feeling a little lost and unsure of what speech path they should travel.

Sitting in that office I felt as if bricks had been lifted from my shoulders. I was finally in a place where I knew that the people helping my son were absolutely as passionate as I am, but also incredibly talented and experienced in apraxia. To be honest, if Dave Hammer was still providing weekly therapy, I’d be tempted to move to Pittsburgh!

Some things implemented by Dave Hammer:

  • He preferred more of a play setting in therapy to prevent burn out given Andon’s age and amount of sessions needed per week.
  • He recommended that we let go of some of the sounds that we’ve been working on because Andon provides substitutions for those sounds. Instead focus on some sounds that are completely omitted.
  • He recommended a multi-sensory approach including visual prompts, touch cues, picture cues and verbal prompts with repetition of quality practice words. Some activities from “Easy Does it Apraxia” can be used to implement these.

Of course there’s so much more, but his plans are very individualized. We also now have the option to have phone conferences with Mr. Hammer when concerns arise either for ourselves or our SLPs. My personal hope is to meet the goals he has set for us and to return for a reevaluation and new goals in the next year.

For more information on Dave Hammer’s services, please click here.

by Tara

Sacrifices.

So many sacrifices.

That’s what I’ve learned much of this journey with apraxia is all about.

Also the dreaded word: INSURANCE.

Oh yes, the stories I have about dealing with insurance when it comes to speech and occupational therapy.

remember

Our insurance through my husband’s work is actually very good overall. EXCEPT for speech and occupational therapy.

They have a yearly maximum. Only 30 speech therapy sessions covered per year. That’s it. No more. They don’t care what the diagnosis is.

30. That’s all you get. (Same for occupational therapy).

Who picks that random number?!? 30. Some person sitting in a meeting room … “Hey 30 speech sessions for a child sounds like more than enough. Who needs more that?”

That doesn’t even come out to 1 speech session a year for the 52 weeks in a year!

Ugh.

Kids with apraxia need AT LEAST 3 to 4 sessions a week.

We’ve tried begging my husband’s HR department. We’ve tried appeals directly through the insurance company. We’ve tried having our SLP and OT call the insurance companies themselves to plead our case. Nothing. Nada. Zip. Only 30 per year.

So, after the 30 ran out last year we paid out of pocket for a couple months (a straight $100 per hour of speech therapy and a little more for OT).

That sure adds up quickly. We cancelled cable. Stopped eating out. Went down to one car for a while (my husband can take a bus from our neighborhood to his office). Started shopping at second-hand stores.

Our son was making so much progress there was no way we were going to stop treatment.

falling apart

After more hours of researching we made the decision to buy our son a separate insurance policy. With recent changes to health care laws, we were able to “shop around” and find a plan that offered coverage of UNLIMITED speech and occupational therapy sessions per year.

We priced out what it would cost to continue paying a straight hourly fee versus buying a separate insurance plan and the insurance plan won. Yes, that meant another monthly premium, another deductible, etc. BUT it still financially was less than paying straight out of pocket.

So, we dropped our son from my husband’s plan through work and got him his own.

BEST DECISION WE’VE MADE!

Yes, it’s still a financial strain on our family, but we can stay with the therapists our little boy loves and we don’t have to count sessions or worry about “maxing out” every year. Right now, he’s in speech 4 times a week along with occupational therapy 4 times a week.

Just add it to the list of things I never imagined I would have to know or learn about. Thank goodness I have though.

Apraxia is full of roadblocks, challenges, uphill battles and more roadblocks. The key is finding ways to get around those roadblocks. Even if it means sacrificing. Even if it means staying up all night staring at numbers and dollar signs on a piece of paper until your head spins. Even if it means going without certain “things” for a while.

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