Jake's Journey with Apraxia

And the Friends We Met Along the Way

Last week we concluded our regular six month testing and Jake may be moving out of an apraxia diagnosis and into something less severe. The tests proved my own assessment of his speech – his errors are now consistent and age-appropriate. Yay! His progress in six months time has blown me away. While we are still not out of the woods yet, each and every day Jake’s four-year-old body continues to heal. God bless this child who has ignited my spirit and brought so much passion to my life. I am grateful that today, on the first Apraxia Awareness Day, I can share our journey with this speech disorder and all of the many things it has meant to me over the past two years …

apraxia awareness

Denial. The beginning. My child needs speech therapy? Um, no. Speech issues don’t run in my family; I’m sure he’s just a late talker. When I first called Early Intervention, I only did so because I felt it was required of me as a mother, not because I genuinely felt there was anything wrong.

Neurological Speech Disorder. Jake was diagnosed with Childhood Apraxia of Speech the week of his third birthday. I had never heard of apraxia before. The definition that made the most sense to me early on was one Leslie Lindsay wrote in the book “Speaking of Apraxia” … The problem with CAS occurs when the brain tries to tell the muscles what to do and the message gets scrambled somehow. The child typically knows what she wants to say, but her brain is not sending the correct instructions to move the mouth the way that it should move.

Fear. Will my child ever speak? How will he ever have a complete vocabulary when he can only say five words now and he has to work so hard for one tiny sound? Will he have friends? Will he be able to go to a normal school? Will he have other learning disabilities?

Jealousy. Hearing other children talk when your child is nonverbal will break your heart in two.

Apraxia, etc. For me personally, apraxia has also meant ear infections, eczema, asthma, food allergies, and food sensitivities.

Education. Being a journalism graduate, I love to read and write and have spent hundreds of hours researching apraxia, sensory processing disorder, autism, fine motor skills, vestibular system problems, and biomedical treatment. Once I educated myself, I no longer felt so helpless and was able to start enforcing treatment plans geared specifically to CAS.

Kaufman Cards. From age three to four, we worked on Nancy Kaufman’s first set of cards. I knew the words backwards, forwards, and inside out. SLP #3 from our rural public school with limited resources, used her $200 therapy allowance (the first she had gotten in several years) to buy Kaufman Cards for Jake. The private SLP who followed her also continued on with the Kaufman cards and I even made my own set to use at home.

Prayer and Faith. When I read the book “Calm my Anxious Heart,” by Linda Dillow, my attitude towards apraxia changed. I accepted that God has a bigger plan for my life than I have for my own. I stopped feeling like a victim and started focusing on the positives. I realized that in life, we all have struggles, and apraxia just happens to be mine. I started praying – real heartfelt prayers – for God to lead me in this journey and to heal my baby.

Blogging. In December of 2011, I created a blog to document our journey with apraxia. The people I have connected with online have truly been a blessing and have inspired me to keep moving forward.

Tears. In the beginning, many sad tears were shed out of confusion, fear of the future, and a situation that was 100 percent out of my control. I have cried more happy tears this year, however, than I have in my entire life.

Passion. The kind that whisks you off of your feet, forget all reason, and love intensely.

Patience. Patience. And more patience.

Repetition & Building Brain Pathways. Drilling sounds, words, sentences, and songs over and over again builds communication pathways in the brain and makes them stronger. Repetition is a technique that has remained constant in our treatment plan.

Lynn Carahaly’s  Speech-EZ Hand Cues & Katie. When Jake first did hand cues, I was amazed at how much easier to words flowed out of his mouth. Having cues for different sounds has made a huge difference in Jake’s progress. Our current SLP, Katie, is a master with hand cues and her chemistry with Jake has been a huge contributor to his progress over the past 6 months. Love both these girls!

Hard work and Determination. I have worked my butt off teaching Jake how to speak and making sure he receives the type of therapy that will benefit him the most. He in turn, has been the most amazing, inspiring student. He works hard and although he can certainly become frustrated from time to time, he never gives up. I hope he never loses this personality trait that apraxia has forced upon him.

Biomedical. After getting many tests done, Jake started on a diet and supplement program in September of 2012. Going this route has dramatically changed our relationship with apraxia because it has made the words come so much easier. I feel like biomedical has been a terrific supplement to speech therapy.

Follow Your Gut & Listen To Your Heart. Enough said.

Joy. This is a big one. It is so big that I think it might just surpass all of the negative emotions listed above. Nothing makes me happier than hearing Jake say a new word or sentence. Every single word has brought me joy from deep inside my soul. I wish and pray that every mother who has a child with CAS gets to one day experience this emotion. It is the best feeling feeling ever.

 

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10 thoughts on “Apraxia Awareness Day 2013: What Apraxia Means To Me …

  1. Amen to everything you said! I couldn’t have shared my heart as eloquently as you have, so thank you! Happy Apraxia Awareness Day. 🙂

    1. tstarmom says:

      Thank you Jenn!

  2. Tara from Minneapolis, MN says:

    I LOVE this blog!! The section on “tears” gives me so much hope … I look forward to those ‘happy tears’ in the next year or so?!!? This journey is exhausting and depressing … but as always … your honesty helps those of us who can’t quite ‘see the light at the end of the tunnel’ yet … Thank you … Thank you … Thank you …

    1. tstarmom says:

      Tara – yes, “exhausting” – should have used that as one of my bullet points! 🙂 Hang in there, girl!

  3. Melissa Hoekzema says:

    I am just starting my journey. My son is 25 months and says 4 words. No true apraxia diagnosis but that’s the treatment plan I am going to start with. I just don’t know where to start. Feeling overwhelmed like you. Now I am going to educate myself and kick some butt! So any pointers as to where you started would be awesome! Thanks and God bless you!

    1. tstarmom says:

      Melissa – You are exactly where I was a couple of years ago! 25 months and 4 words. To the right of this page under “Categories” is “In the beginning…”. These blog posts go over how we learned the initial sounds that a child is supposed to learn. This was a long process for us, so I had a good year to research & get advice from a couple of different SLPs on how to best learn these sounds. You can also search “Baby Babble” on my blog and you will find a review I did on that DVD – that taught Jake some of his first sounds. I didn’t start Kaufman cards until age 3, but wish I would have done it sooner. Also, I didn’t start hand cues until age 4, but wished I would have started those asap as well. Best of luck to you and your little one in your healing journey! 🙂

      1. Melissa Hoekzema says:

        Thanks so much! Have ordered Baby Babble and am looking into the Kauffman stuff! Cooper is picking up sign language well so I and going to look into hand cues also. We are waiting to hear back from a local rehabilation hospital (hopefully tomorrow!) before they will start scheduling therapy. The SLP from the Early On program is not doing what I think he needs. The SLP says 2 is too young to diagnosis/treat for apraxia and is treating him as a late talker. We sort colors and play as your first SLP did. I started reading your blogs from the beginning and I swear you are writing about Cooper! Thanks for leading the way for me and making it easier for me to see the light at the end of the tunnel!

  4. Naomi says:

    I’m thrilled to hear Jake is moving out of an Apraxia diagnosis! This gives me so much hope. Although we don’t get to see Dr.Taz until the end of July, we started reducing the amount of Gluten and Casein for our son and we are noticing the difference. I’m so grateful I found your blog. I’m looking forward to starting biomed treatment. Thank you for sharing your journey and please continue blogging.

    1. tstarmom says:

      Thank you Naomi! So glad your son is showing some signs of improvement & so glad you still have your appt. with Dr. Taz! I can’t wait to hear how it goes. I haven’t blogged on it yet, but Jake has also been doing acupuncture/acupressure at her office this month and he is responding excellent. I sought acupuncture/pressure out in hopes of boosting his digestive health in order to heal his food allergies, but she has also been doing a point for apraxia and has given me massages to do with him at home for his speech. Be sure to keep me posted on your appointment or feel free to email with questions.

  5. Holly says:

    So happy for your encouraging progress and news! We have had the same burst of progress with my 4 year old daughter! It’s amazing to look back over the past year at all the emotions, energy and focus! I relate so closely with your post, thank you!!

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