So tomorrow May 14th is no longer just an ordinary day for our household anymore. Tomorrow is National Apraxia Awareness Day! If reading this first sentence has you asking just what the heck Apraxia is, I will start with a little info on what it is and how it affects my family.
Childhood apraxia of speech (CAS) is a neurological motor speech disorder in which a child has difficulty rapidly, accurately, and consistently producing and timing the movement sequences needed to produce speech. CAS is not due to having weak muscles for speech. There are several characteristics that are generally accepted to distinguish CAS from other types of speech delays and disorders. (excerpt taken from the CASANA website)
So our journey with Apraxia started long before I even knew what Apraxia was. My son was a happy, healthy baby, but he did not babble or coo, he would constantly over stuff his mouth with food, grope with his mouth and tongue and he had little to no words when it came time for him to “talk”. Before I even realized something wasn’t quite right we had started with sign language just for fun like I had done with my daughter – but he didn’t catch on nor seem interested, but we continued to push on and eventually he picked up a few signs like please, thank you, more, all done, milk and a few others – he began to make high pitched shrills and lots of grunts when he wanted something – so I would sign with him and say things like “oh you want more milk” and he would shake his head yes or no. Everyone said to me oh he is just a late talker – “it’s a boy thing”, or his big sister talks for him, or he doesn’t talk because you just give him what he wants and he doesn’t have to work for it….all of these were far from the truth – we worked so hard to get words – he started saying ma for mama and “A” for our dog Ace, he even said “Nana” a few times before completely loosing the word. When he was almost 20 months I contacted our local Early Intervention program and asked for him to be evaluated for speech – they came out to our house and he passed his first evaluation (which is an overall evaluation for cognitive abilities, fine and gross motor, expressive and receptive language) they said while he did have expressive language delays that he scored high enough in the other areas that he did not qualify for intervention and that they could come back in a few months to reevaluate that the scoring changes once they are a few months older – so we waited those few agonizing months and when they came back low and behold he now qualified to speech therapy.
We began in home therapy for the next several months under Early Intervention and when he turned 3 that December he would transition to the IU13 for continued therapy – the transition was tough he was not interested in sitting for 45 minutes working hard on something that he knew was hard and he would throw epic fits to get out of working – it was quite the battle – eventually he gave in and we switched to 2 – 30 minute sessions a week which seemed to go a little better – we began to see very slow (i’m talking like a snail’s pace) improvement, but I knew in my heart that something was quite right and this was just not a “typical speech delay” that he would grow out of.
I began to research and turned to our local Children’s Hospital to have him further evaluated by someone who specializes in Apraxia. When we went for our testing I told the therapist my son’s history (he was 33 months old) and she went through a battery of test and at the end told us with out a doubt that our son has Apraxia. While I was heartbroken to know that there was something truly wrong and I happy to know I had a starting point of what we needed to do and so our journey was taking a little bit of a left turn but at least we were headed in the right direction.
We are now in intensive speech therapy 3-4 times per week, and added occupational therapy this past year. We incorporate PROMPT therapy as well as the Kauffman approach and of course play into our sessions. He has made amazing strides since his diagnosis in October 2014, while strangers still may not understand all of what he says, it has become so much easier for our family to understand and communicate with him, not to say we don’t have days of complete and utter frustration – those days happen, as he is completely aware of his Apraxia and that it makes it difficult for him to talk and communicate with others, but he hasn’t let that stop him at all. He loves going to school and making friends and is very much looking forward to going to Kindergarten in the Fall. Apraxia has not stopped my little boy from being a silly, smiling, caring, rambunctious little boy. He is a cuddle bug, and always looks out for his big sister, he loves working with his PaPa in the garage and helping to take care of his dog Ace, and playing with his little cousin Tennley.
We are participating in our second Walk for Apraxia on June 11th, 2016 and we are so excited to continue to help raise funds for research and treatment for kiddos with Apraxia. If you would like to donate to our team you can click the link to make a donation 2016 Hershey Walk for Apraxia – Apraxia-Kids and to learn more about Apraxia please check out CASANA.