Jake's Journey with Apraxia

And the Friends We've Met Along the Way

by Jayme, Contributing Writer

“Mama, mama! Pay be mean! Pay be mean!”

Usually this type of tattle
telling would annoy a mom and get a sigh before going to settle 
whatever silly fight the kids were having. To me, it was a milestone,
 a beautiful declaration of emotion.

Our son Tyson lived almost three years of his life saying nothing. There
 were a few sounds, but mostly cries of emotion, angry outbursts and an
 earnest desire to be heard. We worked hard to understand him and let
 him know we were trying, but without any words we could only guess or
 assume what he was “saying.”

Yesterday I heard him. I truly heard him.

When he cried out that his 
sister was being mean in the car, I just about pulled over and cried.
 Those were words, maybe without ending sounds, but it was clear as
 day. Sister was being mean to him and he was upset.

Nowadays our house isn’t just the endless chatter of our girls. Now
 there is a new voice, Tyson’s voice.

“I wan cookie.”

“I wan do it.”

“I wan pay.”

“Mama, pee pee.”

“My turn.”

“Pay share.”

“‘ank you.”

When we first found out Tyson had apraxia, we were devastated. How
 could this perfect little boy have something “wrong” with him?

After almost 2 years of assessments, speech therapies, occupational therapies, grinding day in and day out, we can see a future. We can see what sacrifice and hard work can do for our son. We can see a little boy that is stronger than anyone we’ve ever met.

Along with his tenacity and determination, Tyson has always been the sweetest and most loving little boy, even when he couldn’t speak. He is such a big brother and knows when
 something is wrong or when someone is sad or hurt. He is always the first one to give a hug or kiss and genuinely cares about his family. So much feeling and emotion was written on his face and its refreshing and pure joy to see him able to verbalize that now.

To have this new way of seeing him, hearing him, knowing him, is 
something I will never be able to explain. It’s like I’m meeting him 
for the first time and I get to fall in love all over again.

Tyson still has a long way to go before the world will hear him as
 clearly as we do, but I know that day will come. He will have a voice 
louder than most.

Tyson has worked so hard attending Foundations Developmental House, usually 4-5 times a week. Day after day after day he walks in to FDH and gets to work. This fall he will be attending priority pre-school and I have no doubt he will continue to grow and excel as a student and as a person.

Tyson taught us different is beautiful. Different is interesting. 
Different is strong. Different is smart. Different is funny. Different
 is loving. Different is perfect.

I thank God for sending us Tyson, to remind me everyday what it means to be strong.

by Tara, Contributing Writer

I dreamed about my wedding since I was 5 years old (don’t all girls?!).

When the day finally came, I remember hugging my dad at the end of the aisle. He tried to let go after a few moments, but I hung on. Tightly. Trying to “take in” that moment because I knew the day would go by in a blur.

It was a blur – a spectacular blur – but it went by so quickly!

Same goes for pregnancy. You dream and hope and wish and wonder … Boy? Girl? What will he/she look like? Be like? Grow up to be a doctor? Lawyer? Teacher? Country singer?

Well this week another moment happened that I can’t quite wrap my head around. One of my son’s speech therapists said “I think B might be age appropriate in some categories for his speech and language”.

AGE APPROPRIATE!!!!!

AGE APPROPRIATE!!!!!

Music to this apraxia mommy’s ears!

I actually stopped the speech therapist and asked her to repeat herself because there have been countless times I never thought this day would come. In my head, I thought she has to be joking!

Our son has been in speech therapy since he was 18 months old. He’s now 5. I should sit down sometime and figure out exactly how many therapy sessions he and I have sat through.

A LOT.

Well, I can’t fully celebrate quite yet. The speech therapist is going to run B through a bunch of standardized tests/assessments and we’ll see what the “official” results show. But, the fact she thinks we are darn close feels like a miracle.

don't stop

Right now, he’s still in private speech 3 times a week (and gets speech therapy through our school district, however that will be end when school lets out for the summer).

What would I do with a calendar that has dare I say it some ‘spare’ time in it that doesn’t revolve around appointments? I literally have no idea.

Of course, not everything is sunshine and roses on this journey. Our daughter who turns 4 this summer is struggling the past couple months so we are increasing her number of speech therapy sessions. I hope she can rebound with more therapy this summer and we can officially cut back for good in the fall? I probably just jinxed everything.

The moral of this story is that the blood, sweat and tears of the past 3 ½ years might actually soon be paying off. I barely knew what a speech therapist’s job actually was and now they are truly our lifeline to our family.

I feel like I’m in The Little Engine That Could …
I think I can.
I think I can.
I think I can.

We haven’t crossed the finish line yet on our marathon. But, I promise I will be throwing one heck of a party when I can finally say “NO MORE SPEECH THERAPY appointments!” I’m pretty sure it will be considered a holiday in this house.

by Katie, SLP, Contributing Writer

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Dear Katie:

I would love to know at what point apraxia is considered “resolved.” I’ve heard so many different viewpoints on this. Some say it’s when a child no longer requires speech therapy and others say the process goes from apraxia, dyspraxia, phonological, articulation, and each is new diagnoses. It’s so confusing.

Quoting Kate Hennessy, a young adult diagnosed with CAS and the daughter of Kathy Hennessy, CASANA’s Director of Education, “Apraxia is something that will never go away. Though I am resolved today, it still affects so many aspects of my life.” I believe this statement is insightful, and it reflects my personal opinion of the disorder.

My focus as an SLP is, in essence, assessing and treating the symptoms of CAS. In my experience, as a child diagnosed with CAS makes progress, his speech production begins to follow more developmentally appropriate patterns (e.g., using phonological processes, having difficulty articulating only later developing sounds). The basis of the disorder remains CAS even though the symptoms may change.

Often children are dismissed from speech-language therapy when their overall speech and language skills reach “normal limits” or “average” according to standardized testing, especially where insurance reimbursement is concerned. However, some areas of deficit may persist. When a child diagnosed with CAS nears dismissal, I would encourage parents to ask their SLP to “deep” test any areas of deficit to determine if specific skills are indeed functioning within normal limits.

For example, if a child “passes” an overall language assessment such as the Preschool Language Scales-Fifth Edition (PLS-5) but continues to exhibit errors in grammar and syntax, administration of the Structured Photographic Expressive Language Test-Third Edition (SPELT-3) may reveal these specific skills to be functioning in the below average range. Likewise, a child may achieve an average score on the Goldman-Fristoe Test of Articulation-Third Edition (GFTA-3) based on the number of errors he demonstrated. However, clinical judgment may override an average test score when considering the difficulty a specific child has previously shown integrating new sounds into conversational speech.

Even when a child achieves speech and language skills within normal limits, and his CAS appears “resolved,” I would propose that the apraxia remains at some level. Certain words, sound sequences, auditory processing tasks, etc. may present occasional challenges throughout his lifetime, all of which can be overcome using principles learned in early therapy sessions.

Reference: http://www.apraxia-kids.org/library/overcoming-the-odds-an-account-of-growing-up-with-childhood-apraxia-of-speech/

Dear Katie:

Apraxia and multilingual families … Any thoughts on how to target treatment and get a child ready for school when they are English learners? My son speaks very little, but can say sounds not typical in English because of the two other languages used at home and because of CAS, has a very tiny single word vocabulary. Anything parents can learn to do at home with kids?

No matter a child’s lingual background, in the case of CAS I would always recommend addressing the building blocks of speech production as a means of improving his speech and language development. Focus on laying a foundation by helping him imitate individual consonant and vowel sounds which make up all the languages you wish for him to learn. When he has multiple consonants and vowels in his repertoire, begin having him imitate simple consonant-vowel combinations (e.g., bo, bee, bye), especially those that approximate functional words.

Here is where Nancy Kaufman’s Speech to Language Protocol enters the picture in my world. Customized pictures and syllables may be created with your SLP to address sounds not found in the English language. Overcoming CAS, as I see it, involves the process of learning to produce and sequence sounds. This principle is true for all languages.

One thing your SLP can assist you with is identifying which consonants and vowels your child is already able to produce. From there, she can formulate appropriate approximations for words you and she choose to target – words which have the most meaning and communicative power in your child’s life.

As a child increasingly learns to produce sounds and varied syllable shapes (e.g., consonant + vowel, vowel + consonant, consonant + vowel + consonant, consonant + vowel + consonant + vowel), it is AMAZING how his expressive language growth takes off! His little brain begins to simplify difficult words independently, and before you know it, he will even form simple two-word combinations.

Dear Katie:

Is it common or are there cases that a child with apraxia, once talking, has problem with language (language delay or language disorder)? 

Absolutely. In my experience, most children with CAS display expressive language deficits in particular. Once a child begins producing single words and phrases, he may leave out small words (e.g., articles, prepositions) and word endings (e.g., -ed, -s). The child generally focuses on getting his main point across in the simplest way possible. Adding these words and word endings requires greater sound sequencing, which is where children with CAS have difficulty. As a child’s sentences become more complex, choosing correct word order may also prove to be challenging.

When a child produces a string of related content words that do not include prepositions, articles, or word endings and may be in the incorrect order, his ability to clearly express his thoughts and ideas is negatively impacted. Answering and asking questions may be tough. A child may appear as though he does not understand something when actually he is simply having difficulty expressing his answers.

* Katie is Jake’s former SLP and one of the many things I loved about her was that she was always open to my questions/concerns as a parent. She is currently blogging quarterly and on occasion, we will feature this Q & A style post where she will address questions parents have on apraxia. Last week in the Apraxia Kids Learning Activities & Support Facebook group, I asked parents if they had any questions for her and these were a few of the responses we got. Thanks for your help, Katie! 

by Lisa Geng, President of Cherab and Co-Author of “The Late Talker” book

I wish I could even speak to you for just a minute to say “It’s going to be OK” and to give you a glimpse of the future for your child you are so worried about. Right now you are feeling overwhelmed as Tanner was recently diagnosed with oral and verbal apraxia, hypotonia, sensory processing disorder, and dysarthria by SLPs, a pediatric neurologist, and a developmental pediatrician.

Lisa and her son Tanner

Lisa and her son Tanner

You’re still processing the meaning of what the SLP meant when you jokingly asked her if he’ll ever talk, and she seriously answered after a long pause, “Well, it depends.” You’re wondering how it’s possible to have a child in speech and other therapies six days a week and progress is still so pitifully slow. Your heart breaks each time a stranger asks “What’s wrong with him?”

You are trying to learn about speech, motor planning impairments, neurology, special needs, special education, and special education law, all while you are still trying to get a handle on general parenting. And even on a good day, not knowing who, if any of your friends, will understand if you called them to brag that he just said “mama” for the first time at 3 years old when their children of the same age are discussing the plot of Toy Story 2.

I want you to know there is hope, and that maybe all he is going through right now will even make him a better person in the future.

Tanner as a baby - www.jakes-journey-apraxia.com

Baby Tanner

Early on don’t let anything negative a professional says make you give up your belief in your son no matter who they are. Nobody knows your son like you do. Like when he is testing for kindergarten and the school professionals tell you that Tanner will never make it in a mainstream kindergarten class and instead needs to be schooled in a self-contained learning disabled placement. Advocate for them to give your son the benefit of the doubt and have him mainstreamed for kindergarten. His teacher will end up saying, “He didn’t just make it, he was one of the top students in my class.”

He proved anyone who didn’t believe in him wrong, and because you advocated for him, you provided him that opportunity to do so.

Take him to as many private professionals as you can afford, who can help you make sure that he gets and stays in the mainstream in school. Get him tested formally, privately, outside the school as well. Not just for the school, but for Tanner. Show him on paper how smart he is, and find other ways to keep his self-esteem up as he’s learning to talk.

Don’t confuse not being able to talk with not being able to think. Apraxia is a motor planning impairment, so sometimes you can say or do something, and sometimes the more you want to say or do it again, you can’t.

You will learn once your son starts to talk that he’s thinking all the time right now. He can’t stand not being able to talk, it really frustrates him so much. Please let him know that you and his therapists are helping him learn to talk, and that one day he will. He is listening to everything you say, and I know this because he told me. When he’s frustrated tell him to think about the future when he can tell you everything he wants, can sing any song he wants. That will make him smile. And if there is something he wants to tell you and he can’t use an alternative means of communication to let you know either, let him know to remember it “really hard” so that when he learns to talk he can tell you what it is. You know what an amazing memory kids with apraxia typically have.

Once he learns to talk Tanner will tell you he is happy you have shared his journey online from when he was first diagnosed, and wants to continue to help others. On the other hand, he doesn’t want anyone to look at him a “special needs” because of his apraxia diagnosis, and wants to show that apraxia can’t stop him from doing anything he wants to do even if sometimes it can get in the way a bit.

For example, it was his idea to join the high school debate team and he’s loved it even if he doesn’t always get an award in competition. He works really hard to improve his public speaking skills. I’ve heard from both of his debate teachers who have graded him with As, that he is an inspiration to them and the other students.

2011 - Tanner with his first ribbon for competitive speaking on the high school debate team - www.jakes-journey-apraxia.com

2011 – Tanner with his first ribbon for competitive speaking on the high school debate team.

Communication didn’t start with words. When Tanner was still 2 years old his SLP taught him simple sign language, as up till almost 3 years old his only real word was “ma” but mostly the sound “mmm” was used for everything. And remember when he had a cold around 3 years old and after you gave him some of his cold medicine he looked up and tapped all his fingers together as he looked at you which meant “more”. His first real ability to communicate with you was to ask for more cold medicine. I know how frustrating it was that you couldn’t give him more, but how you were able to explain to him you understood what he was asking, and why he couldn’t have more.

I want you to know that simple sign language ended up really sticking with Tanner even though he’s become an eloquent speaker. Apparently he remembers “talking with his hands” and he loves his sign language class where he’s graduating with honors from a college level 3 class he was selected for. Apparently even though you only taught him simple sign, he picked up ASL as if it’s second nature to him.

Tanner believes both debate and sign language will help him in his future goals, which is to become a special education attorney so that he can help other children like him who have apraxia or other impairments.

I know you worry he’s not going to have friends, or is going to be teased. Tanner’s always had friends, don’t worry about that. You are going to research how to help Tanner not be a target for bullies and it’s going to work. Also after reading the research which supports not starting kindergarten until 6 years old when there is a delay in any area, you advocate to keep Tanner in preschool through his IEP till he turns 6, which provided that extra year of therapy and developmental time. Perhaps too he’s not teased because he’s always one of the larger kids in his class.

Speaking of which, Tanner is 6 foot 5 inches tall now.

Tanner, 18 years old - www.jakes-journey-apraxia.com

Tanner, 18 years old

You wonder about his future ability to ever drive with his motor planning impairment. He had no trouble at all learning to drive a car, or a boat, or a jetski. In fact he’s even going to become an excellent backseat driver once he learns how to drive!

You may be shocked to know that Tanner stays up to date on world events and enjoys discussing it with you and others. He loves football and is going to think about playing it in high school, but after you show him all the research on traumatic brain injuries from that sport, and meeting with his pediatrician, he’s going to choose to just play casually with friends and watch it on TV instead of playing through his school. But he’s going to love to talk about football with his Dad.

Tanner has many interests just like any other teenager. He loves watching Japanese movies with subtitles and has even picked up learning some Japanese. He enjoys video games, hanging out with friends, and court TV shows like Law and Order. Oh and he’s really good at baking brownies, and trying to come up with special recipes on his own. Tanner loves animals so make sure to always have pets for him as that really helps him too. Dogs and other pets don’t care if you have a speech impairment when you give them a hug. Tanner still loves his dogs Simba and Sandy today, and when he got old enough he volunteered at the Humane Society as a cashier.

Today Tanner has a sophisticated vocabulary, I’d say he’s well above average in that regard. Even though his speech may break down still if he’s sick, stressed, or tired, many people today have no idea he was ever special needs. If his speech does break down, he’ll explain it’s just that he has apraxia.

Tanner’s been interviewed a few times and ever since he’s learned to talk, he brings up how it bothers him when people assume he doesn’t know a word when instead it’s that he knows the word he wants to say, but he can’t get it out of his mouth due to his apraxia. He says even though he understands people are just trying to help, it frustrates him. I wish you could speak with him right now, he’ll tell you he’s doing great, and he really is.

After being in a mainstream school placement since kindergarten, your “little guy” is 18 years old and I just watched him graduate from high school where even though he averaged around a 3.5 GPA, this last semester he had a 3.8 GPA. All four years of high school Tanner was in honors classes with no IEP or 504 plan, no accommodations of any sort, and no need for any. I’m so very proud of him.

Funny enough I cried watching him graduate from preschool, but not high school. I no longer have fears for his future.

Tanner and his mom Lisa at his high school graduation this week - www.jakes-journey-apraxia

Tanner and his mom Lisa at his high school graduation this week. Goooo Tanner!

I wish I could tell you that it’s going to be easy getting to where we are now, but it was a long road. There was over a decade of various therapies, too many IEP meetings, file cabinets full of evaluations and other paperwork from neurologists, therapists, and even a pediatric gastroenterologist.

You will learn that his speech is better after a day of going on rides that have a stronger g force, so in addition to traditional and alternative therapies, you will be driving to theme parks almost every week. You will figure out nutritional strategies that will help like fish oils and IQ’ed which are way easier. You will go outside the box, and some may laugh at you for doing so. You will start support groups and even write a book to share what you learned. And your inspiration is Tanner and his brother Dakota, both of whom were “late talkers” and both who overcame.

Sometime after he learns to talk Tanner is going to tell you and everyone that if it wasn’t for his mom he’d never be where he is today. I know right now none of this seems possible, but just remember to always give your son that benefit of the doubt. We all deserve at least that.

Congratulations Tanner on your recent graduation from high school and thank you Lisa for sharing your journey with Tanner’s apraxia! What an inspiration both of you are! To learn more about Lisa, please click here. 

by Amber, Contributing Writer

Last Thursday was Apraxia Awareness Day. It was awesome to see all of the support being shown for our children. My own children no longer have a diagnosis of apraxia, but my Facebook news feed still filled with pictures of family and friends wearing blue and white to continue to show support for all children with apraxia. It was an overwhelming feeling to see that we still have such a great support system, even without having the diagnosis anymore.

Finding a great support system is so important when a family member is given any type of diagnosis. When Cason first received an apraxia diagnosis several years ago, I was able to find support in many different ways.

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There are family and friends that I can always count on for support. They don’t always completely understand the situation, but they understand that support and encouragement is needed. They send positive messages and celebrate the small steps as well as the big steps. They are a listening ear and a shoulder to cry on.

We were very fortunate to find a supportive Developmental Pediatrician that was very knowledgeable in apraxia and knew how to get our insurance to give the boys the amount/type of therapy they needed. Anytime we received a denial, we knew we could count on him to get it reversed. We only saw our Developmental Pediatrician once a year, but we contacted him and his office several times throughout the year. They always went above and beyond to help us out. Not all parents I know have that time of support from the medical field, so I was always grateful.

Our speech therapists were supportive on a personal level. They were truly invested in our kids and wanted the best for them. We could always count on them for encouragement and understanding. There were a few occasions when I broke down in the speech office and cried, and they knew what I was feeling and had tears in their own eyes. We moved across the country several months ago, and our previous therapists still show an interested in the boys and check in on them via email.

Which brings me to another support system that has been huge in my life….the virtual friends I have made along the way. I often think how lost I would have been in the beginning of Cason’s diagnosis if I didn’t have the internet. I’m a stay at home mom and a military wife. I was still new to the area we were living in and had made only a few close friends when we first received an apraxia diagnosis. Nobody I knew personally had experience with apraxia.

I did what most of us do nowadays; I headed to the internet. The world wide web definitely has its negatives, but there are also so many positives. Not only can we gain information, but we can also meet others that have/are experiencing the same things.
I joined a Facebook group set up by CASANA for parents of children with apraxia. Post after post was from parents that had the same concerns, questions, and worries that I was facing. The comments on those posts were from parents that had actually “been there, done that.” So it wasn’t just someone trying to understand. It was people that actual did understand.

I also read several blogs written by parents of children with apraxia. I watched YouTube videos posted by other parents. The videos were helpful for me to see what therapy might work for my own child.

The parents I met online became a virtual support group. They were living the same situations or had already gone through it. They “got it” to a degree that my other support systems didn’t because it was their reality also.

Even though Cason and Callen no longer have an apraxia diagnosis, I still have the same support systems. That was made obvious to me last week as my news feed had picture after picture of people wearing blue and white.

We will always be grateful for the support we have been shown, and we will continue to show our support towards others. Our boys have found their voice, and our family will always participate in Apraxia Awareness Day because every child deserves a voice.

Many thanks to Sheila over at the new apraxia blog What Would Gia Say? for sharing this beautiful poem about her sweet girl. I also love the Apraxia Awareness video she published last week and invite you to check it out. Enjoy your Sunday, blog friends.

What Would Gia Say?

What would Gia say
If I told her she was smart
If I told her to stand up, stand out
You set yourself apart

What would Gia say
If I told her she was brave
If I told her to look forward
Walk the path that I will pave

What would Gia say
If I told her she was strong
If I told her don’t give up your fight
This journey will be long

What would Gia say
If I told her I was proud
If I told her keep on reaching
Stick your head above the cloud

What would Gia say
If I told her there was hope
If I told her she will conquer this
Together we will cope

These thoughts of adoration
New feelings everyday
Often times I ask myself
What would Gia say?

Today marks the third Apraxia Awareness Day. What do you know about apraxia? Are you just starting out? Settled in with a therapy routine? Does your grandchild, niece, nephew, or friend’s child have this diagnosis?

The following are a few facts about childhood apraxia of speech (CAS):

  • Apraxia is a neurological motor speech disorder where the child’s 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.
  • Apraxia comes in all shapes and sizes. Some kids have verbal apraxia, which only affects speech. Other children have global apraxia, which affects other motor skills such as catching a ball or running. In other words, the brain knows what to do, but is not able to communicate that message to the legs or arms.
  • Sometimes apraxia is the only disorder a child has, but other times it presents itself with autism, downs syndrome, sensory processing disorder, and a host of others.
  • Progress varies from child to child. I’ve heard of children getting a diagnosis at age 2.5 and speaking at an age appropriate level a year later. I’ve also heard of kids remaining in speech therapy through elementary/middle school.
  • The current apraxia of speech rates are sketchy – 1 or 2 children per 1,000 – but nothing definitive. The CDC has not released any official stats specifically on apraxia.
  • Symptoms include: Quiet baby who does not babble, first words are late and limited, can understand what is being said much better than he/she can talk, and inconsistent speech errors.

My journey with apraxia would not have been the same without the warrior moms and their sweet children who have walked along with us. Here’s a little more about a few of these these special kiddos …

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Kate
Age: 10 years and 1 month
Grade: 4th
Diagnosed: 2.6 years old
Speech Therapy: Age 18 months to 6 years old
Frequency of Speech Therapy: 1x/week from 18 months to 21 months and 2x/week from 2.6 years old to 4.0 years old. Then we added feeding therapy for a total of 3x/week for about 6 months, dropping feeding therapy and one session of speech therapy, but adding OT until Kate reached about 6 years old.
Type of Speech Therapy: Kaufman, home drills, natural environment, and speech-intensive preschool
Additional Diagnosis: AD/HD
Words of Wisdom: “If you think your child has apraxia, don’t worry…it’s not that serious.” ~Kate, age 10
Mama’s Words of Wisdom: ”Don’t be afraid to ask questions and partner with your therapist; it’s a joint-effort.” Mom and author of SPEAKING OF APRAXIA (Woodbine House, 2012)

Jake
Age: 6 years and 8 months old
Grade: Kindergarten
Diagnosed: 3 years old
Speech Therapy: Age 27 months to 5.8 years old
Frequency of Speech Therapy: 1x/week from 27 months to 35 months and 2x/week from 3 years old to 5.8 years old.
Type of Speech Therapy: Kaufman and Speech-EZ hand cues
Additional Diagnoses: Multiple food allergies / eczema and asthma that are in remission
Mama’s Words of Wisdom: If Plan A doesn’t work, relax. There are 25 other letters in the alphabet.

Colten
Age: 6 years and 2 weeks
Grade: Pre-K 4 (second year in a row)
Diagnosed: 3 years old
Speech Therapy: Age 22 months to Present
Frequency of Speech Therapy: 2x/week from 22 months to 36 months and 4x/week from 3 years old to present.
Occupational Therapy: 2x/week since age 3.5
Type of Speech Therapy: Kaufman and Hodson Cycles
Additional Diagnoses:  None
Mama’s Words of Wisdom: Trust your gut. Always trust your gut. I’m so glad I didn’t listen to the SLP who told us to get an augmentative communication device because he would never be a primary vocal communicator. She couldn’t have been more wrong. Mama knows best. Remember that.

Megan
Age: 5 years and 6 months
Grade: Pre-K 4
Diagnosed: 20 months old
Speech Therapy: Age 18 months to Present
Frequency of Speech Therapy: 2x/week from 18 months to 3 years old, 5x/week from 3 years old to 5 years old, and 4x/week from 5 years old to present.
Occupational Therapy: 1x/week from 3 years old to 5 years old and 2x/week from 5 years old to present.
Type of Speech Therapy: Kaufman and Sign Language
Additional Diagnoses: Multiple food allergies, eczema, asthma, EOE,  hypotonia
Mama’s Words of Wisdom: You are your child’s best advocate. Educate and know what your child’s rights are and ensure they receive them.

Luke
Age: 6 years and 7 months old
Grade: Kindergarten (typical classroom at public school)
Diagnosed: 2.2 years old by Nancy Kaufman with severe apraxia and residual apraxia by 3.7 years old
Speech Therapy: Age 18 months to Present
Frequency of Speech Therapy: 1-2 times a week from 18 months to 24 months old and 3-7 times per week from 2.2 years old to 4.5 years old. Participated in intensive therapies at Kaufman Children’s Center, STAR Center, Foundations Developmental House, and George Washington University CHAMP camp. Currently receives speech therapy privately once per week and 2 group therapies at school.
Occupational Therapy: Has been done throughout the course of this journey 1-2 times per week (sporadically). Currently OT consult only.
Type of Speech Therapy: Kaufman Speech to Language Protocol, Speech-EZ Apraxia, and CASANA Boot Camp Trained SLP
Additional Diagnoses: Dyspraxia, sensory processing disorder, ADHD
Mama’s Words of Wisdom: Talk is cheap, speech is priceless.

Aaron
Age: 5 years and 2 months old
Grade: Pre-K 4
Diagnosed: 2 1/2 years old
Speech Therapy: 2 1/2 old to Present
Frequency of Speech Therapy: 2x/week
Type of Speech Therapy: Prompt and Kaufman (in the beginning)
Other Therapies: OT (in the summer), ABA (just started in March)
Additional Diagnoses: Autism, hypotonia
Mama’s Words of Wisdom: It’s a marathon, not a sprint.

Preston
Age: 4 years and 11 months old
Grade: Preschool (2nd year)
Diagnosed: 2.4 years old by Nancy Kaufman, but as he began to speak, I was not convinced he ever had apraxia.
Speech Therapy: Age 18 months to Present
Frequency of Speech Therapy: In the beginning, 2x/month. Moved to weekly at around 2.5 years. Twice a week at around 3 years old. 3x/week for the last 6 months.
Other Therapies: Received developmental therapy and OT through EI until 3 years old. Is currently in ABA, social skills, OT, and vision therapy (along with speech).
Type of Speech Therapy: Not really sure!
Additional Diagnoses: Autism spectrum disorder, sensory processing disorder, global developmental delay, and a bunch of other “alphabet soup” type diagnoses.
Mama’s Words of Wisdom: Everything will be alright in the end. If it’s not alright, it’s not the end.

Andon
Age: 4 years and 7 months old
Grade: Pre-K 4
Diagnosed: 3 years old
Speech Therapy: Age 23 months to Present
Frequency of Speech Therapy: 1x/week from 23 months to 36 months and 2-3x/week from 3 years old to present.
Occupational Therapy: 1x/week since age 3.5
Type of Speech Therapy: Some Kaufman style therapy as well as Dave Hammer methods. Currently integrating some Kaufman and Speech-EZ hand cues.
Additional Diagnoses: Food allergies, eczema, severe night terrors, and sensory processing disorder.
Mama’s Words of Wisdom: Keep reading and searching for what works for you and in the mean time just love your little one and do your best!

Cason
Age: 4 years and 9 months old
Grade: Preschool
Diagnosed: 17 months old – oral apraxia and suspected apraxia of speech / 26 months old – firm apraxia of speech diagnosis.
Speech Therapy: Age 17 months to 4.5 years old
Frequency of Speech Therapy: 1x/week private speech therapy from 17
months to 22 months, 2x/week early intervention speech therapy from 17
months to 3 years old, 3x/week private speech therapy from 22 months
old to 4.5 years old.
Occupational Therapy: 1x/week from 17 months to Present
Type of Speech Therapy: Kaufman
Additional Diagnoses: Oral apraxia, sensory processing disorder, hypotonia
Mama’s Words of Wisdom: Faith- It doesn’t make things easy, it makes them possible.

Gia
Age: 3 years and 11 months old
Grade: Preschool
Diagnosed: 3.4 years old
Speech Therapy: Age 36 months to Present
Frequency of Speech Therapy: 2x/week in Priority Preschool, and 2x/week in Private Therapy.
Occupational Therapy: 2x/week in Private Therapy
Type of Speech Therapy: Speech-EZ hand cues
Additional Diagnoses: Sensory processing disorder (suspected), food allergies, and eczema.
Mama’s Words of Wisdom: Sometimes the things we can’t change, end up changing us.

Many thanks to the mothers who helped me out with this project. Your perseverance, love, and work ethic blow me away. Best wishes in your healing journey with apraxia, etc.

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