Jake's Journey with Apraxia

And the Friends We Met Along the Way

One of my favorite shows growing up was The Facts of Life. I loved Blair, Jo, Tootie, and Natalie and all of the fun, happy, sad, and trying times that they experienced from living in an all-girl household. And when I reflected back on this week, the theme song from that sitcom popped into my head …  You take the good, You take the bad. You take them both and there you have, The facts of life, the facts of life.

Apraxia is a fact of my life. And this week was a reminder that along with every missed syllable and garbled approximation, there are also just as many good days that fill me with hope. Tuesday and Thursday Jake did a phenomenal job at speech therapy. Not only did he speak well, but he also focused and did his best. This week he didn’t do Kaufman cards or the workbook. Instead he practiced his old sounds out of a different book and practiced the “new” /l/, /f/, /s/, and /z/ words with the Artic Photos Fun Deck flash cards.

Jake says the /s/ and /z/ sounds very well. In fact, he had 100% accuracy when this sound is at the middle or end of a word. The complexity of these words also surprise me. The  words in the first Kaufman set were so basic and now he is being drilled on words like: puzzle, dessert, Santa Claus, and husband. Ms. Kelly does a hand prompt for this sound, but usually Jake doesn’t even need the cue as a crutch.

He also does the /f/ and /l/ words pretty well. Ms. Kelly instructs him to “put your tongue up” for the /l/ words. To help him along with the /f/ words, he’s coached to “put your teeth on your lip and let me see you blow the air out.” Ms. Kelly also uses the PROMPT method to encourage the production of this sound.

At home Jake’s speech was also great this week, especially on Friday. He worked hard for me when we played school and also on his speech words. Too bad I can’t download a teacher’s brain and then reboot the next morning new and improved. The following educational materials are proving to be a success in our household:

  •  I Love Letters by Jean Feldman and Holly Karapetkova (activities for teaching letters)
  • Zoo Phonics cards
  • The Original Summer Bridge Activities Workbook for Pre-K to K
  • Team Umizoomi Math: Zoom into Numbers iPad app

On Thursday morning I finally decided to take Jake to the doctor because he’s had really bad eczema on his heel for five months now. I wanted to take him to the doctor to make sure it wasn’t infected. He’s had eczema since he was three months old and this area has always been bad, but this time I just can’t get it under control. Here’s a visual …

Fortunately, the doctor said it was “just eczema” and prescribed him a stronger corticosteroid creme. She said to put it on him two times a day and if it’s not better in 14 days, she will refer him to a dermatologist.

How’s the diet going? I’m still buying organic fruits and not allowing him to have sugar other than Hershey Kisses. I haven’t been doing Sneaky Chef recipes this week and Jake has been indulging a lot in his favorite food – pizza. I am doing my best, but the diet has left me dazed and confused, which is why I have still been researching to find a professional to assist me.

Last week I was considering two different professionals to assist me in this process; I decided against both of them. I sought the advice of the Naturopath I took Jake to when he was two and she recommended I find an integrative MD. I didn’t even know these existed, but fortunately I found someone who I believe will be a perfect fit for us. She seems to be the best of both worlds. Our appointment is on August 1st and I am beyond excited to get him tested and on a diet/supplementation plan.

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10 thoughts on “The Facts of Life

  1. G's mom says:

    Hi –
    I am just beginning this journey and feel totally lost and alone. My husband is still in the denial stage so I can’t really talk to him yet.

    My just turned 3 year old son, (5/28/09) was diagnosed with moderate verbal apraxia. His ECFE teachers told us to have him evaluated. We, being first time parents, just thought he was w “quiet, good” baby. He reached all his other milestones, some early. He took his first steps at 9 months. I kept telling myself, “Early walker, late talker”. He has just started private speech therapy 2 x a week for the summer then he will have it 3 x a week during the school year.

    I have been researching the nutritional aspect of this condition and noticed you touched on it with a swich in Jake’s diet. Can you tell me more? Did you have a comprehensive metabolic workup done? What were his results? Gluten sensitive? Celiac? Omega, Vit e and D deficiency? fat malabsorption? Carnitine levels? As you can guess, I have been going “Google crazy”

    Any advice along this avenue would be greatly appreciated.

    G’s mom from MN

    1. tstarmom says:

      Hi G’s mom! Your story sounds identical to mine. 🙂 I have been researching apraxia for the past nine months (Jake got dx at age 3 also), but I’ve been looking in depth at the nutrition piece of the puzzle for a couple of months now. I just finished reading “The Autism Revolution” by Dr. Martha Herbert. While Jake does not have autism, the first half of this book was especially helpful in explaining how the body/brain works and how vital it is for kids with speech and other issues to have the right balance of amino acids, vitamins, nutrients. It also gave real life stories of autistic kids who have dramatically improved with supplements and diet changes. I loved this book and would highly recommend it as a starting place. This book also sites the research study that Dr. Claudia Morris did with Vitamin E and Omega 3 supplements. It really goes over all those things that you mentioned above.

      As I mentioned in this blog post, I have an appointment August 1st with Pediatric Holistic MD. She sounds amazing and I am so excited to have him tested! (He has not been tested before). What I have found is that there are MANY people who can test and give supplements, but I wanted someone with as much education & experience as possible. I am in the process of compiling all of the notes I have taken over the past two months to make sure that all my questions get answered. It is a process.

      If you happen to get your child tested, please let me know the results. Does he have anything else going on like asthma, eczema, or food allergies? Since I am also in the beginning stages of the nutritional exploration, my only advice would be to try out organic fruits & veggies and avoid processed foods as much as possible. I also have Jake on Juice Plus and Flintstones Omega 3 vitamin. For the past month or so, when Jake has “good” days where his speech is much better than usual, I write down what he says and what he’s eaten that day. If he’s on medication and he regresses or progresses, I write that down also.

      I will blog on what he gets tested for and the results in August.

      1. G's mom says:

        Hi-
        Thanks for your reply We have tried to buy organic fruits and veggies for Garrett since he started solids. My husband is a chef so we all eat pretty healthy (min. packaged foods) He has no other issues, allergies, etc.
        I wanted to share my experince on fish oils and Vitamin E with you. I did research on fish oil and the importance of getting a good one. I have Garrett on Nordiac Naturals Omega 3-6-9. It has the Borage oil for GLA’s which I have read is important to have with the Omega 3’s for kids with apraxia. (please see Cherab.org for more info) He has been on this for 3 weeks and I have noticed a surge in his words. I have also added 91 Iu of Vitamin E to this daily. I’ve read that the combo of this is beneficial. I urge you to look into this more for yourself. It may be something you can add before you 8/1/ appt. and see if you notice a difference.

        MM

  2. Wendy says:

    Which zoo-phonics cards are you using?

    1. tstarmom says:

      Hey Wendy. My neighbor, who is a Pre-K 4 teacher, let me borrow her flash cards for the summer. I looked it up on their web site though, and this link will take you to the ones that I am using – http://www.zoo-phonicsathome.com/p-1-essentials-at-home-program.aspx. This is an at-home kit and cost $38. I only have the flash cards, but the other things in the kit look pretty cool. Jake really likes it and I was attracted to it since he does so well with hand prompts in speech.

  3. tstarmom says:

    How great that your husband is a chef and that you’ve always fed your little one organic and limited processed foods. Sounds like you’re on the right track. I have seen the information from Cherab, but unfortunately fish oil products are out for Jake because of his extreme fish allergy. (He reacts even if fish is being cooked). I can’t even do Omega 3 eggs b/c he reacts to the algae they feed the hens. Ugh. Our allergist said the oil of fish technically should be fine, but the processing would have to be done perfectly. He advised not to risk it.

    I bought some liquid Vitamin E, 240 Ius, about a month ago, but I always get afraid to experiment with him too much b/c of his crazy, little allergic body. I’m also interested in trying Nutriiveda, but again, I want to be on a doctor’s watch and certainly don’t want to give him something if technically he doesn’t need it. (This is why I’m testing him first).

    Please keep me posted with your child’s progress with Vitamin E & Omega supplements. I truly think it helps many children and I can’t wait to start my own process with this.

  4. Jamie says:

    We took Logan to a holistic MD as well as a nutritionist. He is on a corn-free/GMO free diet and it has made a world of difference. We took video over time of the change and it was amazing. It is hard to be corn-free and GMO free diet but he went from two words in a sentence to 5 words in a sentence in 10 days and has sustained that change.

    1. tstarmom says:

      Did you know of any other food allergies before you took him to the holistic MD? Tori Starling

      Visit me at http://www.jakes-journey-apraxia.com/

      ________________________________

      1. Jamie says:

        No, we were not aware of any other allergies or sensativitities before taking him to the holistic MD. We just wanted to explore every possible type of treatment for his Apraxia. We started him in ST and OT at 15 months. The holistic MD also had us add a probiotic and increase his fish oil dose. He has made huge strides but has had periods of regression as is typical with apraxia.

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