Gratitude Brings Us Happiness

by Amber, Contributing Writer

There are many things to be grateful for in life, and it seems people take the month of November to post these things daily on social media. I always enjoy reading the posts by family and friends. It’s nice to get a glimpse into the things in their life that bring them joy, beyond the obvious. Coming up with 30 days of gratitude pushes a person past the typical “I’m thankful for family, friends, food, shelter, employment, and health.”

gratitude

I thought I’d take this time to post a few things I’m grateful for in regards to people and situations brought into my life because of apraxia. When I first heard the term Childhood Apraxia of Speech, I was grateful we weren’t dealing with a serious or life threatening illness, but my heart still hurt knowing my children would struggle. It was hard to be grateful in the beginning. Here I am, almost three years after Cason’s diagnosis and almost a year after Callen’s diagnosis, and I can now see many things to be grateful for when it comes to apraxia.

There are the obvious things for which I am grateful, like family and friends’ support, great speech therapists, and a wonderful developmental pediatrician. For this post, I wanted to touch on a few other things.

I am grateful for the support group I have found online. I have met so many wonderful parents through their personal blogs about apraxia and through Facebook support groups. Their kind words, experiences, and knowledge have been so helpful and encouraging over the years. Nobody I knew personally had ever dealt with apraxia, so finding people online that were experiencing the exact same thing, or had already been through it, was very comforting.

That leads me to another thing for which I am grateful, being able to give support and encouragement to other parents. I have enjoyed sharing Cason and Callen’s experiences with other parents. I enjoy sharing information, articles, blogs, and resources. I remember how overwhelming it was when I was first trying to sort through all of the information online. One of my personal goals is to always pay it forward and help other parents in any way I can when it comes to apraxia.

I am also grateful for the life lessons apraxia is teaching my daughter. Camryn is several years older than Cason and Callen. When the Cason first started going to speech, we didn’t really talk about it with Camryn. She was in public school during the appointment times, so I don’t even think she was aware of his appointments. As Cason got a little older, she tried correcting his speech a lot, and that’s when we explained to her a little bit more about apraxia. We gave her a brief, simple definition that she could understand and be able to explain to others, like her friends.

However, I started homeschooling Camryn a year ago, and she started going with us to speech appointments. She started asking a lot more questions about speech. She’s been so helpful and patient with the boys. She helps them come up with approximations when they have a hard time with a particular word. Camryn is encouraging and their own personal cheerleader when they have successes.

Of course, I think these lessons would have been learned regardless of whether the boys had speech issues. However, I may have taken them for granted or not acknowledged them in the same way.

I am also grateful for the work ethic I believe apraxia is instilling in Cason and Callen. Work ethic seems like such a grown up term for such little boys, but I wasn’t sure of another way to put it. I have watched the boys go to speech three days a week and put in thirty minutes of work, since the age of 17 months.

Yes, it may look like play to others, but they are truly working their brains to get each sound, syllable shape, and word. It doesn’t come naturally and it can be a struggle. Even with the struggle, they work hard and don’t give up. That’s not to say they haven’t had rough sessions, because they have. They are typical kids, after all. For Callen, it took longer for him to cooperate/participate vocally in speech sessions. Now, he works just as hard as Cason and complies with what is being asked of him during a session.

The persistence, determination, and work ethic they are developing are inspiring to me. It carries on beyond speech sessions. At home, they have the same determination and persistence each time I have them mimic a word correctly or have them repeat a phrase.

I am grateful for the way apraxia has opened my heart. I’ve learned to appreciate the little things even more. When Camryn was young, she actually talked early for her age. I can remember her first words, after that, I don’t really remember her evolving speech. It just happened on its own, and I didn’t give it a whole lot of thought.

With the boys, we celebrate the small things and try not to take it for granted. Every day, Callen is saying new words approximations, and I celebrate each new word. I don’t necessarily say something to anyone else, but in my mind I say “Yes!” Cason has been making longer phrases, making up his own jokes, and even tells stories that are several sentences long.

Then there is Caden, who is just about eleven months old. I have been celebrating each sound he makes. Cason and Callen didn’t babble much as infants, so I have a higher appreciation hearing Caden babble and repeat sounds back to me.

So while I’m not thankful that my sons deal with apraxia, I am very grateful for people and situations that have been brought into our lives because of apraxia.

* To read Amber’s bio and other posts she has wrote, click on her name at the beginning of this piece.

Speak the Truth, Even If Your Voice Shakes

Recently a new friend, whose son is also recovering from apraxia, came to me for advice. Although it was hard to be honest, I also felt an overwhelming need to just put it out there. I knew more than anything she needed someone to be straight-up with her.

This was uncomfortable for me because I am a nice girl, a don’t rock the boat kind of girl, a girl who crawls under a rock at the first sign of conflict, and a girl who really hates to dish out tough love … a great girl to come to if you “just” want someone to listen and then give you a big hug afterwards.

And I was faced with a decision. Do I tell her what she wants to hear or what she needs to hear?

And then it dawned on me … there are a handful of special ladies in my own journey with apraxia who stood in these same shoes … friends who were brave enough to say the uncomfortable and to push me out of my comfort zone. At the time, I didn’t always like what they said, but as the days went on, I knew they were only being honest with me and I came to accept their opinions as my own.

What if those people who came into my path knew the truth would hurt me and they decided to look the other way? Told me what I wanted to hear instead of what I needed to hear? What good would that have done? And even more shuttering to think about … Where would we be now if they would have reassured me instead of pushing me?

Once I realized the impact those ladies had on our lives, I knew what I needed to do. I had to be honest with my friend. I prayed for the right words … and it was a success.

Today I give thanks to those girls who coached me – both lovingly and firmly – out of my comfort zone for the sole purpose of helping a little boy find his voice.

meet people

Friend #1

When Jake was nearing the two-year-old mark, I was 100 percent in denial that he had a speech problem. A friend pushed me to call our state early intervention program, Babies Can’t Wait, in order to have Jake evaluated. I knew zero about speech therapy and early intervention.

During a time when everyone else was saying, “He’s fine, don’t worry,” this friend said, “Just. Do. It.” She also followed up with “Have you done it yet?” conversations. By the time I finally called when he was 27 months old, I almost felt like I was doing it for her peace of mind instead of my own.

Wow … Who knows how long I would have waited to seek speech therapy had it not been for this special friend?

I. Am. Thankful!

Friend #2

On a summer day in 2012, a few months shy of Jake’s fourth birthday, I posted a video on my blog of him doing Zoo Phonics. This program is similar to Speech-EZ in that cues are used for the different sounds. Although Jake was still struggling with his words and his focus was challenged, I remember how proud I was of that video.

I was doing it! I was teaching my baby! I was breaking the words apart by sound and he was able to read short words by doing the cues! Jake had stalled out with our local SLP and I was trying some outside the box, at-home therapy with him.

My friend, also an apraxia mama warrior, saw that video a little differently. She saw a boy who had tremendous potential (particularly with hand cues) but was in need of far more than I could give him. I had sought her advice in the past and that day, after she watched that video, she gave it to me. Straight up.

She ordered me to go, go, go to Arizona to see Lynn Carahaly.

Wow … Do you think this Georgia girl would have ever travelled cross-country to Arizona for speech therapy on her own accord? Heck no!

I. Am. Thankful!

Friend #3

In May of 2012, I received an email from a doctor who reached out to me after reading Jake’s story online. She told me she thought he would be a good candidate for the GFCF diet and supplements to target nutritional deficiencies.

This doctor was always very firm and professional with me. When I asked questions she always delivered, never veering away from the truth. She was the definition of straight-up truth-speaking. She always told me what I needed to hear instead of what I wanted to hear.

Wow … What if she would have read our story and then went about her day, never sending that initial email?

I. Am. Thankful!

mentoring is

What about you? Did anyone push you out of your comfort zone and into action mode? Who are you thankful for in your own journey with apraxia?

I Give Thanks

Hello again all! My intention was to follow my initial post with a series of events following our diagnosis and day of reality. It is, however, almost Thanksgiving so instead of dwelling on any challenges or trial and error moments through this apraxia journey I think I’ll give thanks instead. After all, despite the challenges, I can think of hundreds of things to be thankful for.

Well it’s obviously simple to be thankful the moment I look at this adorable face! I’m thankful for a healthy diet and occupational therapy that allowed this little boy to love the ocean without crying that it burns his sensitive, eczema skin like last year and thankful for the years of speech therapy that allowed him to tell me he loved it despite an apraxia diagnosis.

Every time I get down and discouraged about this challenge or feel just plain sorry for my little boy I remind myself that it could be worse. This is challenging but character building. My son is learning to be a hard worker at an early age. He works hard at OT and Speech Therapy four times a week and works hard to speak every word he says. While this journey is a challenging one, there is a light at the end of the tunnel. I pray for those parents who don’t necessarily have that light. We know that apraxia can be beaten. We’ll keep working, keep fighting, keep researching and someday Andon will talk at an age appropriate level. Most likely there will even come a day in childhood that people who didn’t know Andon before will speak with him and never know that this challenge was a part of his life.

I’m thankful that we live in a country filled with resources that allow me to communicate and work with others who are experienced in apraxia and therefore make this journey a little less lonely and little more informed. One of the resources I speak of is CASANA. I’m more than thankful for the summer conference in Nashville where we met Dave Hammer. I highly recommend the conference if it comes to an area near you. What a comforting and informative experience! I’m equally thankful that from meeting Dave there that we realized his personality would be an outstanding fit for Andon and have since been able to schedule a trip to see him in just three weeks! He is such a passionate man and we look forward to his help with this apraxia journey!

Lastly, I am thankful to announce that we are welcoming a baby brother for Andon in April of 2015! We just told Andon and his siblings last week and are so excited that he is thrilled. There was an immediate sense of pride in Andon when we told him that he will be a big brother. He can’t wait to hold him and is so excited to tell people that the baby is coming. He does tend to argue with his brother and sister that the baby is only his brother and not theirs, but we’ll work through that in time…hopefully. He has also decided that he’d like to name him Turbo. Umm, we’ll be working through that too.

I’m thankful for the Jake’s Journey blog post which informed me that holistic doctors are out there and that I was able to find an outstanding one two hours from our home. I thank God often that with a healthier diet plan from our holistic doctor that I can help this baby dodge the sensory processing disorder, food allergies and apraxia that his brother is fighting. But, if for some reason we’re faced with this battle again, I’m so thankful for my knowledge and resources that I’ve gained through Andon’s journey!

Have a blessed and happy Thanksgiving from Andon’s family to yours!

The Listening Program

Please welcome Kelly Pinkham today. When I first exchanged emails with this mama and then later talked to her on the phone, I knew what an asset her story would be to apraxia parents and SLPs. Kelly will be sharing her son’s journey with apraxia and her experience with The Listening Program.  

In 2013 my son Luke was two years old and he only had five words. His father was “Daddy” and I was also “Daddy.” My husband and I often said we felt like we were missing out on hearing his sweet voice and all that a two-year-old should say. In December of that year we decided to have Luke evaluated.

The morning of our meeting my eye began to twitch. I suppose this was mothers intuition, I somehow knew that the news to come was not going to be good. And then confirmation came…. my baby did not have slow speech like his previous pediatrician predicted, instead it was childhood apraxia of speech (CAS).

Tears and more tears!

My husband along with the SLP said, “DO NOT GO ONLINE AND RESEARCH THIS…IT WILL UPSET YOU TOO MUCH!” The SLP recommended speech two days a week for thirty minute sessions and we started the first week of January 2014.

In late February I realized there was no change. So I did what only a good mother knows to do….I went to my one resource…THE INTERNET!

This is where I found Jake’s Journey. And I found a MOM just like me. She seemed like she would climb mountains for her precious Jake and I knew I wanted to do the same for my Luke.
 If Tori went to Gilbert, Arizona and met with Lynn Carahaly then that is what I would do too!

I enrolled Luke in a week-long intensive therapy session. We did speech with Lynn at Foundations Development House (FDH) for two hours a day. On Wednesday of that week Lynn and I had a meeting and she confirmed what the SLP in Atlanta had said … Luke did in fact have severe CAS.

But Luke left Arizona with one new, clear word … “more.” With this one word I felt like I had won the lottery. My baby is improving. Even if only a four letter basic word. It was Gold to me.

It took two weeks after we were back at home to get the full evaluation back from Lynn Carahaly. Lynn recommended going to speech four days a week and doing several at-home speech therapy techniques like parallel play. She also mentioned The Listening Program, which I had not heard of before.

I called the next day and learned that over time, specialized music can reprogram the brain. FDH used the analogy of imagining Luke’s two-year-old brain being like a messy closet. After 30-40 weeks of listening, everything in “Luke’s closet” would be put where it belonged, color-coded, and reorganized.

The Listening Program

The Listening Program

Luke did Level One, which includes ten albums/CDs. The Listening Program also provided me with a SLP that I could call if I had any questions or if I needed guidance. The following are included in Level One:

  1. Full Spectrum- These albums provide the listener with an overall organizing listening experience and prepare the listener for the more specific frequency training to come in the other albums.
  2. Sensory Integration- These albums affect balance, coordination, L/R discrimination, and movement.
  3. Speech and Language- These albums impact such areas as: speech, language, vocal control, attention, concentration and focus.
  4. High Spectrum- These albums impact arousal, alertness, creativity and imagination.

I was like…Wow!! I want this!! But for the money, I could not afford to experiment. I did research on the web and found that it is used by many children and adults from over 35 countries. There were several testimonials that I came across on YouTube where kids seem to have had great success with this program and so I decided it was worth a try.

And I am so happy I did!

In April of this year, Luke began intensive speech therapy with a new SLP. Our weekly schedule was as follows: 2 – 45 minute sessions and 2 – 30 minute sessions. In May we added 15 minutes of sound therapy with The Listening Program, which he does the same time each day. Luke loves the music and he usually works on puzzles or plays with blocks while he does this.

The result …

I did not notice a change in Luke’s articulation right away, but I did notice a more relaxed, less temperamental 2 1/2 year old. Luke’s speech started making progress around four weeks. We went home to visit family and everyone could not believe his progress. He started calling family by names and asking for certain foods and toys. By eight weeks he started saying 5-6 word sentences with 90% intelligibility.

Luke’s growth in the past seven months has been jaw-dropping! At the beginning of this year, Luke was diagnosed with severe CAS by three SLPs. His most recent test results show that he has mild CAS. Luke communicates without prompting and he recently scored on the average range for articulation and above average for expressive language.

Jennifer, our SLP, has just reduced Luke’s sessions to 1 – 30 minute session a week and she plans to discharge him at the end of December. We will reconvene around the age of four to assess where Luke is and to work on literacy skills and reading comprehension.
 This means that in less than one year from starting intensive therapy and The Listening Program, Luke has come full circle.

Luke’s SLP has consistently been amazed by his progress. She had initially thought he would need therapy for several years and is beyond pleased by his extreme transformation.

From the moment that I began to do research on apraxia, I knew that we would give it our all. And that is what we have done. I would rather try everything and regret nothing than to always question. I will never know the exact what, why or how he has improved so quickly, but at the end of the day that is irrelevant to me. The bottom-line is He Did!

If you have it within your means, I would highly recommend intensive speech therapy and to incorporate The Listening Program into your daily routine.

To learn more about The Listening Program, please click here for more information.

Thank you Kelly for sharing your story. I am so happy that Luke is kicking some apraxia butt!

Blog Friends – Please feel free to comment below. Have any of you tried out The Listening Program or something similar? What were your results?

Genetics and Apraxia – Part 2

This is Part 2 of my series on genetics and apraxia. Please click here to read Part 1.

genetics

The genetic results of Jake and the two other children studied, can be found by clicking on this PDF link …

genetics and apraxia

I remember the first time my interest really sparked about genetics and how it could benefit Jake.

In July of 2013  I blogged that Jake had reacted negatively when I gave him an epsom salt bath, which is supposed to be a good detox remedy. He was super hyper, couldn’t sleep, and got a stuffy nose. I asked if any of my readers had ever heard of this happening to other children.

A mom commented, “Jake may have a CBS mutation, which makes epsom salt baths not a good idea because of the sulfur.” She proceeded to tell me about the 23andMe test, Genetic Genie, and Amy Yasko’s book.

That same mom is sharing her son’s results on my chart above. Thank you Candace, for planting the seed.

Until that moment, I had never heard of those things, but I knew at that moment that I wanted to get Jake tested ASAP.

Although there are approximately 25,000 genes in the human body, I have chosen to focus on a handful that are discussed in greater detail in Dr. Amy Yasko’s book “Autism: Pathways to Recovery.”

CBS mutations

According to our Genetic Genie report, “Dr. Yasko considers addressing CBS mutations as first priority aside from addressing the gut.”

Based on our genetic results, I believe that Jake is affected by his CBS mutations, but only slightly. He is sensitive to sulfur, but can tolerate small amounts. Sulfur is not something I want to take out of his diet because it is so important to the body. It is something to be mindful of, however, especially in relation to sulfur-based medication.

Please know that there is a lot more to a CBS mutation than sulfur intolerance, but because of the detailed nature of this topic, I am keeping it short and sweet.

Please see the chart for the results of the other two boys.

CBS mutations play a role in the body’s ability to methylate properly.

Methylation and MTHFR mutations

Based on the NutrEval test Jake had done through our integrative MD’s office in August of 2012, Jake definitely had a methylation issue.

What is methylation?

The methylation pathway is responsible for helping the body handle toxins, immune function, mood balancing, and more. (1)

Methylation is like a revolving door (the kind in an office building or hotel). On a daily basis, toxins are coming in and in a healthy person, toxins are also going out. When there are problems with methylation, toxins get trapped and build up, which can result in short and long-term problems. (2)

Although some of us can eat a diet of processed and pesticide-riden food, get all the recommended vaccines, drink tap water loaded with chemicals, etc. it makes sense to me that some of us may not be so hardy due to genetic predisposition.

Consider these views from Dr. Kenneth Bock’s book “Healing the New Childhood Epidemics” …

Dr. James and Dr. Deth had discovered that many autistic children suffered from a failure to naturally detoxify their own bodies. (3)

The miracle of methylation, once restored, rescues innumerable children from severe problems. (3)

How does methylation relate to apraxia?

Methylation can cause many issues including “language and cognition impairment.” (4)

I also found it very interesting since our apraxic children are sometimes prone to graduate to other disorders – specifically ADHD – that “Methylation also helps to maintain proper levels of neurotransmitters – particularly dopamine, the neurotransmitter most often involved in ADHD.” (3)

BH4 is needed for the development of language. More information on BH4 and how CBS and MTHFR mutations tie in, can be found in the following article: “Grain-Free Eaters Beware: Too Much Meat on Healing Diets?

What were our MTHFR gene mutation results?

The most common MTHFR gene mutations are found at position C677T and/or position A1298C. Jake has a (+/-) mutation on both of these, Aaron has (-/-) on both, and Preston has (+/+, +/-).

More information about the specifics of these results can be found by reading Amy Yasko’s book and in this article …

“MTHFR: Since an estimated 60% of the population has this condition, and it is the underlying cause for many chronic illnesses, shouldn’t we all be getting tested?” 

PEMT Gene Mutation

This was another genetic marker that I found intriguing. Jake has 2 of 2 homozygous (+/+) PEMT gene mutations. According to Yasko …

PEMT is a gene that bridges the connection between the methylation cycle and estrogen. Research has shown that the PEMT gene is increased by estrogen. … This is an important area of inquiry since there is a predominance of autism in males as compared to females. That supports other indicators that hormones contribute to autism. (2)

The other two children in this study were (+/-).

GAD1 Gene Mutation

The GAD enzymes convert glutamate into GABA. People with GAD mutations may need help making GABA. It is very important to have GABA and glutamate in the body balanced. GABA calms the body and glutamate excites it. GABA is also a key to speech and this supplement is often used to help restore speech in stroke sufferers. GABA also supports sensory integration. (5)

Of particular interest to me, was that Jake was homozygous (+/+) to 4 of the 12 GAD1 genes. The other two children had mixed results. See chart for details.

HLA Gene Mutation

The last mutation is the gene that was addressed in the report “Syndrome of Allergy, Apraxia, and Malabsorption: Characterization of a Neurodevelopmental Phenotype That Responds to Omega 3 and Vitamin E Supplementation” by Claudia R. Morris, MD and Marilyn C. Agin, MD.

This report states, “Genetic testing was performed on 10 boys. 100% of whom carried a gluten-sensitivity HLA “DQ” allele (6 with DQ1 gene, known to be associated with neurological complications of gluten sensitivity and 4 with DQ2 associated with classic celiac disease.”

My sample showed the following results for the genes located under “gluten sensitivity” on our report:

HLA gene: All three boys (+/-)
HLA DQA-1 gene:  Two boys (-/-) and one boy (+/+)

Closing

The other two boys both have some mutations on NDUFS7, categorized under mitochondrial function. I had not done any research in this area because Jake had a minimal amount of mutations present. Both of these children have an autism diagnosis in addition to apraxia. It should also be noted that one of the moms does not feel her son is currently exhibiting signs of apraxia anymore.

If you decide to get your child tested with 23andMe, I would love to include your results to this side-by-side comparison. I will keep a tab labeled “Genetics” at the top if you’d like to refer back in the future.

Also, comments are always welcome. I’d love to hear your thoughts on this topic.

* Candace, the mom mentioned above, blogs at Reaching Buzzy.

Disclaimer: All data and information provided on this site is for informational and entertainment purposes only. I am a mom, not a MD or a geneticist. All of the above information is to the best of my knowledge accurate. Please see complete disclosure at the top of this page.

Sources:

Autism: Pathways to Recovery,” by Dr. Amy Yasko.

  • (1) Chapter 2.
  • (2) Chapter 6.
  • (4) pg. 29.
  • (5) pg. 85 & 95.

(3) “Healing the New Childhood Epidemics,” by Dr. Kenneth Bock, M.D., and Cameron Stauth, pgs. 69, 24, 207.

Genetics and Apraxia

At the beginning of this year, Jake had a series of tests done at our integrative MD’s office. He also took the genetic test 23andMe. I thought it would be interesting to compare the medical tests with his genetic make-up.

23andme

This will be a two-part series due to the complexity of this topic.

Throughout this series, I refer to autism a lot. This is because there is much more research on autism versus apraxia. Based on my extensive research on these disorders as well as my own personal experience in raising a child with apraxia, I personally think the two conditions are related. Many things that will help a child with autism have also helped my son with apraxia.

The Beginning …

In December of 2013, I ordered a genetic test kit from 23andMe for the bargain price of $99. About a week later, I received the kit through the mail and promptly sent Jake’s saliva back to their lab. About a month and a half later, I received the genetic “raw data” via email. I took that information and uploaded it to two sites: Livewello and Genetic Genie. Both of these sites take all that coded information and turn it into data that an average girl like me can understand.

The Basics of Genetics …

We have two copies of most of the genes we are born with – one from our mother and one from our father.

Genetic results are listed one of three ways:

  1. Heterozygous: (+/-) one mutated gene from one parent
  2. Homozygous: (+/+) both genes mutated from both parents
  3. Homozygous: (-/-) no mutations

It would make it easier, but not necessarily better, if genetics were black and white. Instead there are many shades of gray with genetic testing. Yes, having no mutation present for a health problem is a positive, but having a gene mutation(s) isn’t always doom and gloom. It increases the likelihood that an issue will arise, but to what degree is often unknown.

Interestingly enough, research has shown that our genes are not our ultimate destiny. Although we cannot literally change our genes, we can alter the way our genes are expressed through diet, toxic load, and environmental influences.

According to Dr. Kenneth Bock in the book “Healing the New Childhood Epidemics” …

Contrary to conventional medical wisdom, the cause of autism is not primarily genetic, but is a complex combination of genetics and environment. Genetics, so to speak, load the gun, and environment pulls the trigger. Genetics alone don’t cause epidemics. Genetics are essentially constant from one generation to the next. Epidemics occur when genetic vulnerabilities are assaulted by environmental changes – introductions of a new virus, a new bacteria, or a new toxin.

Food For Thought …

While I was reviewing Jake’s genetic results, if he had a homozygous mutation (+/+) for something and also had symptoms, I assumed the gene was active. But, I also kept in mind that there were things I could do to try and change the genetic expression or make the symptoms less problematic.

I also found it interesting that some symptoms used to be present, but have now improved. What does this mean? Are they in fact, expressing themselves differently now? Was it because his toxic load decreased? Was it the diet changes? The addition of supplements? Lower inflammation? Nothing? The natural course of his preschool body maturing?

For me personally, genetic testing was more food for thought.

I had certain hypotheses about Jake’s condition and this genetic test was just one more piece of the puzzle. For the most part, it confirmed what I already believed to be true and it also filled in a few blanks. Dr. Amy Yasko’s book was an amazing resource and I found her philosophies to be fascinating.

A few weeks ago I asked if any other parents of apraxic children had done the 23andMe test. I got several responses, but only have two other children to report on at this time. I picked out a few genes that are of particular interest to me.

(Update!) Tune in on Monday to see these side-by-side results.

Disclaimer: All data and information provided on this site is for informational and entertainment purposes only. I am a mom, not a MD or a geneticist. All of the above information is to the best of my knowledge accurate.  Please see complete disclosure at the top of this page.

Sources:

  • Genetic Genie Report, 2014
  • “Autism: Pathways to Recovery,” Dr. Amy Yasko
  • “Healing the New Childhood Epidemics,” Kenneth Bock, M.D. and Cameron Stauth

“Tih-uh-Tee”

Please welcome Katie today. She is one of the four contributing writers who will be sharing posts on a regular basis. Katie was Jake’s SLP for the past two years and is a dynamite apraxia fighter.

With the holiday season upon us, I want to take this opportunity to encourage parents to embrace family traditions as a therapy tool. While children diagnosed with CAS often have difficulty verbally participating in holiday festivities, their involvement can greatly increase with your help!

Begin making a list of words, phrases, and family members’ names you would enjoy hearing your child say. For example, as Halloween approaches, target words and phrases may include “Trick or Treat,” “Happy Halloween,” “Boo,” “pumpkin patch,” and specific costume or character names. Many of these targets contain complex phonemes, syllable shapes, and consonant blends. However, by providing a personalized list to your child’s speech therapist, meaningful gains can certainly be made.

costume

As a therapist, my ultimate goal is to increase each child’s ability to functionally communicate with the important people in his life and to express those thoughts and ideas which motivate him the most. Based on a speech therapist’s specialized knowledge and experience of speech sound development, error patterns, and CAS, she can assist you with breaking chosen target words and phrases into manageable parts or approximations.

“Trick or Treat” may become “Tih-uh-Tee,” “Happy Halloween” turns into “Haa Haa Wee,” and “pumpkin patch” can transform into “puh-kuh pat.” In context, many listeners can interpret these dear phrases, and communication is enhanced.

When “MiMa” and “Pepa” or “Aunt Patty” are coming to town, prepare your little one to call them by name. Take photographs of these special family members to his speech therapy sessions and add these words to your target list. Think of the joy and smiles that will result when approximations of these names are uttered!

Do not be afraid to break away from set goals during your therapy sessions. You know your child better than his therapist, and you know what you deem worthy of attention. I always openly receive such initiative and expertise, and I thrive on partnering with parents to achieve maximum benefits.

The principle of personalizing your child’s speech therapy experience extends beyond holidays. You are the one watching your child “do life.” You know her favorite television show is “Peppa Pig” (“Deh-da Ih” to others). You know that toy he cannot fall asleep without. You know the ice cream flavor she tasted when the family took a trip to Bruster’s. You know the name of his new bestie at pre-K. Team up with your speech therapist to guide your little talker as he shares his heart with the world!

The mother of one of my clients brought to my attention that he could not pronounce “Chloe,” his sister’s name. After spending most of only one therapy session working toward production of “ko” + “ee” and then “ko-ee” (with Chloe present and active in a joint game), this personal goal was successfully reached. It was so much more rewarding for all involved parties (especially the now smiling sister) to have won this small battle than it would have been to practice consonant-vowel combinations (e.g., “hippo,” “beetle,” “Mona”) using flash cards.

A little girl with whom I am currently working with loves to say “dinosaur” followed by an animated “roar.” Unfamiliar listeners are unable to decipher this communicative attempt, preventing continuation of an initiated interaction. Despite her hard work, Mom had been unable to facilitate production of “dino,” an appropriate modification. During therapy, we used hand cues to attain “di-nuh!” Victory!!

Repeated practice of these meaningful words is already built into your daily routines allowing for effective additions to your child’s expressive vocabulary. Furthermore, homework takes on new purpose!

Now . . . Make your list. Suit up. Hand your child her plastic jack o’ lantern. And listen to her say “Tih-uh-Tee” this Halloween. That jack o’ lantern won’t be the only one smiling ☺.

pumpkins

To learn more about Katie, please click here to read her bio.

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P.S. – In addition to speech sessions with Katie, for a few months in 2013, Jake also did teletherapy via our home computer with a company called VocoVision. He had online speech therapy sessions with an ASHA certified SLP and it was magically done with video conferencing software.  Just recently, VocoVision wrote an article titled “Telepractice and Childhood Apraxia of Speech.” Click here to read the article. Because telepractice is relatively new for children with apraxia, I’m sure they would love to hear your feedback as parents and SLPs!