Apraxia Awareness Day ~ May 14th

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It’s very exciting and a long time coming… the first official Apraxia Awareness Day!!! I’m thankful for it and even outside of this day don’t hesitate to share information about apraxia and Henry’s story specifically.

I feel like this is so important because in the beginning of the process with Henry I felt lost, and where ever I turned I got puzzled looks when I mentioned apraxia. No one had ever heard of it, I know I hadn’t. And why is that? Why are doctors and practitioners so comfortable telling concerned parents to take the wait and see approach when it comes to speech, instead of a simple evaluation? There are a lot of “late talkers”, but also so many children that will not find their words without some help. In apraxia’s case, it means very specific, targeted and frequent therapy. I’m so happy I trusted my gut and pushed back. Parents know their child better than any doctor! If you suspect their is a problem beyond just being a little behind, you are likely right. It took me months to find that Henry’s struggle was with apraxia.

After starting Early Intervention at 19 months old and having therapy many times a week, I knew something was wrong when months and months passed without any progress. How could that be? Henry could say “ma”(not to me, but as a babble sound),”ah” for “hot”, everything else was “eh”. Mostly he pointed an grunted. He was smart and observant and you could see his frustration in not being able to communicate. We had already started with some basic sign language even before Early Intervention, but as time went on we really had to build on that to give Henry some means of communication. It wasn’t long until Henry had close to 80 words in sign language, and could combine some. Did I mention he was smart? :) I was so so thankful for that small window into his thoughts, because nothing is more frustrating than not knowing what your child needs. (And btw, it is a myth that teaching your child sign will slow down his ability to talk…it only helps!)

It wasn’t until we got a diagnosis that I realized that his current style of therapy was ineffective and he needed more frequent, intense and specific therapy for apraxia. Once that was implemented, we began to see some progress. We started occupational therapy as well when we discovered he had sensory integration disorder, and for some fascinating reason movement paired with speech attempts really helped him produce some new sounds. We felt like we were finally finding ways to help Henry.

I was surprised and heartbroken, however, watching him go through various therapies (usually 7 appointments per week) and seeing that it was such a struggle even though he was trying so hard! He watched the therapist’s mouth intently, he just couldn’t get his lips and tongue to follow. These are things that come effortlessly to most, but are so difficult for children with apraxia. This is when I started to learn about motor planning and various therapies to help. I found Nancy Kaufman who developed the KSLP technique that was a real breakthrough for Henry. Individual sounds started to come… da, ba…etc. After some months of practice he could combine these sounds, which isn’t easy for an apraxic child because of the planning required to move your mouth from one position to the next. Then came some words, mostly rough approximation, but soon other people aside from my husband and I began to understand them. Then came the exciting combining of words…two word phrases..three…four!! He took off from there over a two year period.

Today, Henry is four. He still gets speech therapy 4x a week, but his progress is remarkable. This is credited to incredible therapists, the right therapy, a lot of work at home and fierce determination and hard work on his part. If he were to meet a new therapist today, without them knowing his history, I doubt he would even carry the apraxia diagnosis anymore. He still struggles with some words, mostly with clarity in long sentences…and he’s behind on the language component, but there is a huge, gleaming light at the end of the tunnel that I am so grateful for. I wasn’t sure I would ever see it. People who meet him now will not know how hard he worked to get where he is, that it still takes more effort and thought to speak where it comes so easily for others. Or that it took 6 months of therapy to say “i” for “hi” and year of therapy to say “moo”…putting “mmm” with “ooh”. Those are all huge victories and not ones I will ever forget. We don’t take any words for granted in this house, even the occasional slip of naughty ones!

My goal when this all began was to get aggressive and focused about treatment while his brain was still forming and such a sponge, and to get him caught up before kindergarten. My hope was that when he was older he wouldn’t remember the struggle, and that the therapy and hard work would happen when he was young and I could still disguise it as fun. I hoped he wouldn’t feel he was missing out on other “kid stuff” or being treated differently by his peers because he couldn’t be understood. Well we are there, he did it! Henry is social and loving and confident. I still do a fair amount of translating for him, but he gets his point across all on his own most of the time. I watch with pride on the playground now as he approaches other children. They don’t stare and him and then take off because they don’t understand him. Now, instead, he may suggest going on the slide, playing pirates, or tag…and they get it. They hear him, they respond and he finds a new playmate! This is a far cry from the days when he used to bring hands full of wood chips to another child and grunt and point in an effort to interact. What a long way he has come!

Often, unless you are a parent of a child newly diagnosed with apraxia, it is hard for others to understand the fear and anxiety that comes with it. I was so worried he may never clearly communicate, he may not have friends as a result or be able to have his needs met on a daily basis. Almost all of my anxieties in regards to apraxia are quieted now. He may have struggles with reading, spelling or writing, but we will cross that bridge when we get to it, if we do at all. Right now we are focused on his successes and we are enjoying hearing his stories, jokes, and even a few fibs here and there. It’s magic!

Many wonder why I still focus on apraxia while we have a new hurdle with Epilepsy and other neurological abnormalities. Well, for me, while we are overcoming apraxia the struggle is not soon forgotten. My heart goes out to other parents starting their journey with apraxia and spreading awareness in general is a priority of mine. That’s why I’m so happy that apraxia has an official day dedicated to this. It’s a jumping off point. Today Henry is wearing his apraxia shirt and passing out blue and white bracelets we made to his teachers and friends. Posters are up and information is going out the parents. It’s a step in the right direction and I’m committed to getting the word out every May 14th and year round for that matter. I don’t think Henry even really understands what this is all about, but I knew he felt special today. One day, we will explain it to him, we will show him videos and this blog. We will show him how far he’s come and how hard he worked. I hope he will feel the intense pride in himself that we feel and know that it’s made him a stronger person.

Speak up for those who can’t! Find out more about apraxia at http://www.apraxia-kids.org


4 thoughts on “Apraxia Awareness Day ~ May 14th

  1. your post is comforting. My son was evaluated for speech and developmental therapy as he wasn’t talking. They had a hearing test done and we learned he needed tubes, which helped but there wasn’t an opening in speech therapy only in developmental so we have been doing developmental until this week. It was our first first week in speech therapy as an opening came available. She could tell in his first session by his behavior, and the info about him that I gave her that he had apraxia. I’d never heard of it until then. She explained it, cautioned me against going and internet searching and scaring myself, but I couldnt help myself. Glad I found your blog thanks to pinterest. She said she wasnt giving him a “diagnosis” which I’m sure is because she isnt a doctor, but that he is somewhere in the middle on the grid. She said there were much worse cases and then other cases so mild that most times they never were caught to be diagnosed. Now, he is in weekly speech therapy, and biweekly developmental therapy. I just am unsure what to do otherwise.

    • Hi Melinda…
      sorry I’m just seeing your message now. Speech therapists, when experienced, are the best professionals to diagnose apraxia. I would recommend continuing with the speech therapy and attending the sessions to pick up ways to help at home. Never be afraid to question your therapist though, especially when you are having doubts. You can ask how many apraxia cases they have diagnosed and treated and move on if you feel like she isn’t the therapist for you. Therapy does take time with apraxia but you should be seeing some progress. It sounds like you are doing everything you can. If you haven’t already, an OT evaluation I think is always helpful. Good luck

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