Jake's Journey with Apraxia

And the Friends We Met Along the Way

Today I’d like to introduce you to Kristy. She is a mama whose path crossed mine on our local apraxia Facebook page. She and I instantly clicked because we were both seeking out holistic treatment at the exact same time. A few emails and a phone conversation later, we met up for lunch one day and have been friends ever since. As far as I am concerned, we were destined to be in each other’s life. Her story is a huge source of inspiration …   

Eight years; that is how long we waited for our son, B. Living the life of infertility puts life into perspective. The day I discovered I was pregnant was the happiest and scariest day of my life. I had recently traveled to Ghana, Africa on a mission trip and came back to the states very sick. Not only was I heavily vaccinated for this trip, but I was heavily medicated for almost a month from an unknown virus I had contracted. On that sunny day in August 2009, my elation of finally being pregnant was overshadowed by fear of the toxins in my body that our baby was conceived in and what the future might hold for our miracle baby.

Fast forward to December 2010, my 9 month old son had his first bought with double ear infections. Being one month late on his vaccinations, they also ‘caught him up’ on this visit with a concoction of 5 vaccines. After one week of screaming, crying, mild fevers and rage, our perfect boy changed into a zombie. He lost the 3 words he had been using. His development stopped in all ways; communication, fine and gross motor skills and emotions.

Unfortunately, I spent the next year in denial. B was basically non-verbal but would laugh on occasion.  He did learn to crawl and walk. He was fascinated with everything; staring intently as if he were studying with the intensity of a scientist. Eventually the ‘stemming’ started – spinning, flapping, walking on tip toes, and humming.

And then there were the intestinal issues. B LOVES food! The problem was he had never had a solid bowel movement. I kept asking his pediatrician about this, but she kept blowing it off.  At his 2 year exam, her answer was “Don’t worry, it’s just toddler’s diarrhea. He will outgrow this in a year or two”. WHAT? I told the doctor this was unacceptable and I wanted his stool tested for yeast and I also wanted to know how to test for possible food allergies. She denied and said it would eventually pass.

I left that day with a referral to a Pediatric Developmental Specialist for developmental and speech delay. I had also already been in contact with our state program called Babies Can’t Wait.

That day I took things into my own hands and lost all faith in our doctor, our medical facility and our insurance (none would help me get the testing I wanted done on my son). I contacted a naturopathic doctor and sent B’s saliva for testing; specifically looking into possible food and environmental allergens and toxins. Also, per my husband’s urging, I began researching Autism.  Believe me, many tears were shed; not for only my sweet son, but for the incredible guilt I had. Was this all my fault? Was my son conceived in such a toxic environment (remember my vaccines and medications from my Africa trip) that this was the result? But nonetheless, I was a mother on a mission.

During this same time, when B turned 2, I had finally been given the speech therapist we had been waiting for; a true angel. I stopped her on our front porch on her 2nd visit and sat with her crying because I wanted to ask her if she thought B was Autistic. She was amazing and we talked for an hour. This was the first time I had heard the words ‘Apraxia of Speech’. She told me, no matter what I did, DO NOT google apraxia! She told me to deal with one thing at a time and that was amazing advice because I was a mess! First allergen testing, second development testing and THEN apraxia!

Fast forward, the allergen testing showed extreme intolerance to gluten, dairy, soy and yeast. Intolerance to foods can have many side effects; B’s were intestinal, behavioral and developmental. This was far from easy, I won’t lie, but with the removal of ALL of these, within a week it was like a cloud had lifted and my son had so much more clarity! Hallelujah! His stool became normal, he began to hold toys and play with them and most importantly, he was happy! In July of 2012, just over 2 months from his 2nd birthday, B sucked from a straw for the very first time! A HUGE accomplishment when dealing with apraxia!

The Developmental Pediatrician appointment went as expected. The diagnosis of mild to moderate Autism Spectrum Disorder was given (along with a few others). For us, it was a means to an end because all we wanted was to receive as many insurance-covered therapy opportunities as possible. We had already seen so much improvement with the diet changes we knew our son was already thriving and the possibilities were endless!

As for apraxia, I will say it is a long, hard battle. The hills are steep and the regression is painful. BUT, the progress, when made, will give you and your child elation like you have never known! B has yet to say ‘momma’ again, but he is gaining ground. He loves his ABC’s and 123’s. He loves music and will hum to his favorite Baby Genius videos. He mimics sounds on his favorite cartoon (Dinosaur Train) and can say many of the words, but with a closed mouth.

bison

The title of this story is “A Life Worth Waiting For”.  B will be 3 in April. I would not change a single moment of our son’s life.  My son is a very loving, funny, expressive, smart boy. I get about 100 kisses a day! He has so much to give and so much to say. One day, he will have more words coming out of his little mouth than I can imagine! One day, he will call me Mommy and tell me how much he loves me. One day…but for now, words are not all we need. I waited 8 years for this child, and every second we have together, whether there are words or not, is more than I could have ever imagined and we are blessed beyond measure!

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4 thoughts on “A Life Worth Waiting For

  1. G's mom says:

    I think that with all the struggles and emotional ups and downs that we “apraxia mamas” are faced with, we are also all blessed with very loving, funny, expressive and sensitive little ones. Kristy’s descirption of B is exactly like my G….even down to the 100 kisses a day. I would have to say….. we are all doing something right.

  2. Mo says:

    Two words for Kristy: Nancy Kaufman. Book it by any means possible; a trip to KCC. You will forever, and I mean forever, be grateful you did.

    http://Www.kidspeech.com

    1. Jenny says:

      I’m with Mo – Nancy Kaufman is a miracle worker. She changed our lives!

  3. Candace says:

    Our stories have a lot of similarities. My son will be 3 in June. We have come a long way in a short amount of time, but there is still a ways to go. Thanks for sharing your story.

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