[The A Memorable Fancy series will return tomorrow]
[The following is real, and important. If you would like to know more about Childhood Apraxia and Early Intervention for its treatment, see www.sjunesmith.org. – TK]
Testimony given to the State of Pennsylvania on October 4, 2012 regarding proposed changes to Early Intervention eligibility:
Hello, my name is Holly and I am here to tell you about my 3 ½ year old son Henry.
Henry was my first child and instantly loved by everyone around him. He got his first tooth at 5 months, took his first steps at 10 months, celebrated Christmas by tearing apart every piece of wrapping paper he could find. But he did it all with a great deal of silence. Please don’t get me wrong, he did cry, when he was tired, hurt, or hungry. But my husband and I used to brag that he was very ‘content’. At work I heard friends chatting with their babies on the phone, and I could hear the sounds of them babbling and cooing, and even when they started saying their first words. One friend even commented to me on how quiet he was when I brought him in for a visit. “Babies are supposed to make noise”, she said, “that’s their job”. But my very content son was quiet.
We always knew he was very bright; he could follow multiple step directions, responded to his name, knew his colors and shapes, and he loved books. We read to him constantly and he would often sit looking at books by himself, quietly.
As a new mother, I was anxious to hear that magical word “mama”, I would have even settled for “dada”. But by Henry’s 18 month check up, we were still waiting. The two words Henry could say were “Car” and “Fish” which actually came out “Ca-“ and “Shh”. Our pediatrician said we could wait a couple of months and see what happens or get him evaluated by Early Intervention. Many friends and family told us not to worry, “He’s just a late talker”, “Wait and see what happens”. But a mother knows her child, and having some experience in Early Childhood Education, we decided to contact Early Intervention, “just in case”. We still didn’t really think anything could possibly be wrong with our beautiful, intelligent boy.
There was a short wait for the evaluation and Henry was 19 months old when we were visited by the Early Intervention staff. They worked with Henry and then asked us several questions, “How does he tell you when he’s hungry?”, “How does he ask for a drink?”, “How do you know when he’s sleepy?”. The answer to every question was “He doesn’t, we don’t know his needs.” The evaluator went over his score and with receptive score of 0 (mean) and expressive score of -2, with a total communication score of -1.07, he qualified for services.
We quickly followed through with the recommendations they provided for us. His hearing check was normal. We started teaching him sign language so that he could tell us what he wanted with his hands while we worked to encourage him to use his mouth. We started working with a Special Instructor in November. Once a week for one hour we worked with her and slowly, Henry started verbalizing more. Suddenly, I had a name, ‘Buh buh’, and it was the most amazing sound I ever heard. A Session Note in June, when he was 27 months old reads “Henry said ‘gaga’ for again. He is saying things more spontaneously – when talking about siren he said /f/ for firetruck and /a/ for ambulance.” Two months later in August “Henry said /w/k/ for walk. He is saying /Ha/ for Henry more often.”
We celebrated every word, every attempt, even every consonant.
When Henry was 2 ½, after our Early Intervention re-evaluation, we decided to add Speech Therapy. He finally had enough sounds to start putting words together and some sentences. Our Speech Therapist from the S. June Smith Center was the first to mention ‘Apraxia’ to us and after reading more about it, everything made sense.
Childhood Apraxia of Speech is a speech disorder that makes it difficult for Henry to correctly pronounce syllables and words. He knows what he wants to say but was not able to produce the words clearly. Children with apraxia have great difficulty planning and producing the precise, specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.
Much like dyslexia, which affects the way a person sees words, for Henry the message from his brain to his mouth gets a little scrambled. Understandably, this can lead to a lot of frustration when we can’t understand what he is trying to say, or when he can’t get the right word out. In addition, this condition can also have an aspect of “stage fright” so if he is pushed to say a word, even a word he has mastered, he quite simply can’t.
Apraxia is not a new condition but it is not well known. Our pediatricians had never heard of it and, if not for Early Intervention we would not likely have gotten a diagnose for it.
Luckily, the course of treatment for Apraxia was to continue the speech therapy we already had in place. But he still struggled. Often, if he had to repeat something more than 3 times to get us to understand, he would get a very sad look in his eyes, and change the subject. He wasn’t even 3 years old and already facing enormous disappointment and struggles in asking for a grilled cheese sandwich or for help finding a specific book.
Henry continued to work hard to be understood. When he transitioned to the IU we changed his weekly hour long speech therapy to 2 – 30 minute sessions based on the researched recommendations for treatment. We added a 3rd 45 minute session using our private insurance which must be preapproved for every session and may be rejected at any time.
Henry is now 3 1/2 and he is one of your success stories, but he still has a number of years of speech therapy ahead. Since he first became involved with Early Intervention he has continued to gain skills and confidence. Through EI he learned basic communicaton for some of his needs, and his behavior did not escalate out of control because he knew what he wanted to say but had no means to do so.
But he is standing on the foundation of 17 months of intervention that he would not have been eligible for under your proposed changes. And Henry is not alone, there are so many other children affected by Apraxia and more discovered every day. If we had not started services for him until he was 3 and had a diagnosis, we would be in a very different place, a very quiet place.
I am scared for him and all the other children with Apraxia who may lose that very small window of opportunity that children have to learn and grow.
Please do not be mistaken. Apraxia is NOT a simple speech “delay”. It is a very serious neurological speech disorder, probably the most severe speech disorder one could name in young children. Your proposed regulations would make most children with Apraxia or suspected Apraxia ineligible.
I ask that you reconsider your eligibility change to only consider the overall score of a developmental domain and not a subtest score. Please do not deny services to children who are doing ‘good enough’. All that does is put the burden on the children to try and make up for that lost opportunity.
Thank you for your time.
[Holly is my daughter, and Henry is my grandson. – TK]