Today is Apraxia Awareness Day. If you would have asked me several years ago what apraxia was I wouldn’t have known. There’s not a lot of info or awareness out there on it. But there should be. I remember Elijah had just turned 3 in July of 2014 and he wasn’t speaking well. He would say things like mama and dada but then mostly use vowel sounds to relay what he wanted to communicate. One night he even said “Night, night” over and over again then those sounds just seemed to disappear and never come back. I knew something seemed off but I couldn’t put my finger on it. He was developing different from Jordan. Jordan didn’t talk much eith
er when he was little, but it was just because he didn’t want to, not because he couldn’t. I was struggling with what to do. One of my very close friends mentioned that one of her friend’s kids had something that sounded similar to what Elijah was struggling with. He had apraxia. I’d never heard of it before. So, I did what any person would do… I googled it. I knew almost right away that apraxia had to be it. It was easy to get scared, though. A lot of the stories online were of some extreme cases. I found out quickly that the only “cure” for apraxia was speech therapy… and lots of it. The same friend who told me about the kid with apraxia recommended a speech therapist. I called and set up a time to meet with her and have Elijah evaluated.
The speech therapist was able to tell me after her evaluation what I had suspected, it was apraxia. We started out at once a week. Our insurance would only pay for 20 speech visits a year without proving medical necessity. I didn’t know how to do that. I tried scheduling an appointment with a neurologist but because they didn’t have a referring physician, they wouldn’t see Elijah. So I went to talk with our physician. It seemed like they kept telling me I was going about it all backwards as if I should’ve known the right way to go about proving medical necessity. I trusted the apraxia diagnosis but I was concerned because of the insurance company. Elijah was going to run through those 20 visits in less than 3 months. Our doctor then wrote a prescription for speech for twice a week. Later I found out that our insurance didn’t think that was proof that Elijah needed the speech. I never got in to the neurologist. We just kept doing the speech.
I would sit in the speech sessions and would make notes about how to practice the skills with him at home. I read online that kids with apraxia really did best with speech 3-5 times a week. So every day as part of our schoolwork we would work on his speech. He had a hard time sitting down and focusing. After hours of reading different people’s blogs and watching videos of their little ones with apraxia I found out that a lot of them were seeing a difference by starting fish oil supplements. Some of the blogs suggested just buying fish oil and then poking a hole in the capsule and adding it to applesauce or yogurt. I tried it and it was gross. Elijah thought so, too. Then I found a website a lot of the moms suggested where they purchased their fish oil supplements, they had fish oil for kids in yummy flavors. I decided to give it a try. We purchased the Junior Omega fish oil from Nordic Naturals. We could tell a difference in his ability to sit still and concentrate within just a few days. I was sold. I saw lots of mixed reports on how much to supplement with so I just gave him a big spoonful… between 5 and 6 ml. Our speech therapist could even tell if we were in between orders and he wasn’t getting it.
Elijah seemed to progress really well. It seemed like we turned everything into a speech lesson. Everyone got on board! I remember when Elijah would try to tell stories I would be able to pick up on what he meant. I’m convinced the Holy Spirit gave me the ability to supernaturally understand what he was trying to say because looking back, there’s no way I could have picked up on what he wanted/needed. Our speech therapist also taught us some sign language to help him communicate. I highly recommend learning it if your little ones have apraxia.
I remember feeling so heartbroken when we would take Elijah to my big kid’s soccer games. A lot of the younger children would play together on the sidelines with their dinosaurs and trucks and Elijah would want to play with them. He would walk over to them and try to sign and play but some of the kids would just get up and walk away from him. I would try to help translate some of his signs but I remember one kid and his parents who who just downright rude about not wanting to play with Elijah and I got so mad that I cried for most of the rest of the day. I couldn’t stop thinking about how ignorant people can be to children with special needs. Elijah is a very special little boy. He has a great personality and he’s even funny, too. It hurt my heart to think that other people couldn’t see who this kid really was. The Lord really comforted my heart and helped me to realize that He has lined everything up for Elijah to thrive; from our church family to homeschooling, He didn’t miss a thing in helping Elijah to climb this mountain successfully. 
Our speech therapist found and utilized a program using the Kaufman Cards. I bought a set of these cards to use at home and they really worked! Little by little, sound by sound, we would rejoice with every new word, every differentiated syllable. The Lord was speaking to me through our journey, too, about how everything we have is a gift, every breath in our lungs, every sound our mouth speaks. Through Elijah’s journey with speech we drew closer to the Lord than I ever thought I could be because I was ushered into His presence because He showed me how to really be grateful. I remember pulling out of Dollar General one day hearing my van’s brakes squeal and I burst into tears so thankful that I had a van to drive. God changed me completely all over again.
In the middle of our journey we took in a little boy to foster. He shares Elijah’s room and toys and life. I was worried about how it would go at first but it’s been beautiful. The little boy learned gentleness and Elijah’s speech continued to improve as he would play! It was just one of those little God moments where I knew that He was lining things up in Elijah’s life for Him to succeed. We face mountains but God never leaves us. He wants us to succeed. And someday our journeys will all be part of our testimony of who God is through us.
So this last year Elijah has been seeing our private speech therapist, Lori Kramer with Speech Solutions in Haubstadt, Indiana twice a week for an hour, as well as the speech therapist at Haubstadt Community School for 25 min/week. We continue to work with him at home but it’s moved from us doing a sit down speech session here at home to just correcting his speech on spot. For instance, right now he says my instead of I. He will get it eventually. I’ve seen him make so much progress already!
About a month ago our speech therapist had to write a letter to our insurance to prove medical necessity. She gave me a copy of the letter, it included this excerpt:
“Elijah ws evaluated at this office on 9/12/2014. Assessments revealed severe verbal apraxia. He was three years and one month old and had a verbal vocabulary of less than five true words. Elijah’s phonemic repertoire consisted of only vowels and very limited use of any consonants. He had no effective form of communicating other than pointing. His expressive language was assessed to be at one year, five month level. By the age of three, children should be using at least 200-500 or more words and combining 3-5 words to form phrases and sentences. They should be asking questions and telling about important events and personal experiences. Elijah was not able to communicate more than 5 true words.
Currently, after almost 18 months of speech therapy, twice weekly, Elijah has increased his verbal vocabulary to near age appropriate levels; however his intelligibility is compromised by sound substitutions and omissions. He also exhibits syllable reduction errors. He is stringing words together to develop phrases and sentences, however will omit articles, modifiers, prepositions and confuses pronouns. He is asking questions using phrases; however he does not always use the correct word. He has made a tremendous amount of progress and is now able to communicate more effectively with his family and friends. He is still difficult to understand at times to the non familiar listener. He does have to repeat utterances when he is not understood and he will use gestures to facilitate speech when needed. He uses phrases and short sentences to communicate about events and to make requests. Elijah still needs therapy twice weekly for at least the next 3-4 months and then one time per week for at least one year or more in order to bring his expressive language skills up to age appropriate levels. Considering his tremendous progress and his age appropriate comprehension skills, it is my opinion that he will meet his long term speech and language goals within the next 12-18 months.
According to the American Speech Language and Hearing Association, ASHA, research shows that children with verbal apraxia have more success when they receive frequent (3-5 times per week) and intensive treatment. As the child improves, they may need treatment less often. It also takes time and commitment from the parents. Elijah’s mother has been working very hard at home with his apraxia therapy as well. Apraxia is not a disorder that children outgrow. These children will not make progress without treatment.”
Reading all o
f this right now really puts all of his hard work into perspective. I honestly thought we were going to have to continue his therapy into 4th or 5th grade. But now I am starting to see the light at the end of this tunnel. It doesn’t seem so far away, anymore!
If you’ve made it this far reading this blog, I sincerely hope that you will walk away with more of an understanding of what apraxia is and we can help spread the word on how it effects kids. Early intervention makes a huge difference!
I hope some of these pictures explaining apraxia will help to further your understanding of what it is.
Also, I’m asking you parents, to please, please help teach your kids how to play with kids who seem different!
We’re all on our journeys together, let’s teach our kids how to love well!
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Everything is indeed a gift! You are one of my favorites that he has blessed me with. 😉 You have worked so hard and diligently to be exactly what these kids need. Thank you.Thank you. Thank you.
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