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Justin's Story Justin
was born in July of 1997. He was labeled a
“failure to thrive” infant right from the start.
He was a very happy baby, but did not want to eat; he was content to starve himself. He was always at the low end of the weight chart. When we started solids it continued to be a
battle to feed him. He was not interested in
playing with or eating the food we placed in front of him.
He did not like to use his fingers to pick up the food, and despised getting his
hands dirty. As he got older we began to
notice that he was much more quiet than other children we knew. He never babbled, and was never real vocal. Between the ages of 18 months and 2 years I began to get concerned because he was not
talking. He would grunt and point at what he
wanted, but never tried to say anything. He
also was drinking a lot of liquids, and wanted to have his sippy cup with him at all
times. He seemed to want to drink all the
time. Eating was still a battle in our
household, and he was still quite thin. I
voiced my concerns to his Pediatrician and was told he was a perfectly normal toddler (we
lived in Pittsburgh, PA. At this time). I was
told the reason he was not talking yet was because of me – that it was my fault. I was told not to give anything unless he tried to
say it by name. As far as his
eating habits were concerned, I was told most children his age did not eat either. I admit I was not comfortable with his answers,
but I thought that he was the expert and knew more than I.
I spent endless hours sitting in front of the refrigerator not getting
Justin his juice until he would tell me “juice.”
He never said it and we would both end up crying – it was torture. I started noticing that sometimes it looked as
though he was trying to say something but he couldn’t figure out how to move his
mouth so the correct sounds would come out. He
would get very frustrated and stop trying. Justin
also started becoming very angry. I
didn’t know it at the time, but he was angry and frustrated because he wanted to
communicate with people but he didn’t know how.
So he had a lot of tantrums and a very upset and worried mother. I went back to his pediatrician and told him how I
thought he was trying to talk but unable to figure out how, and about his frustration
level – and once again I was informed it was all my fault. When Justin was 2 years 3 months old we moved to North Carolina. While staying in the corporate apartments I met another mother with a son the same age as Justin. I noticed how the other boy was talking in complete sentences and able to carry on a conversation – Justin could barely say one word. The other boy treated Justin differently and kept asking his mother what was wrong with him. My heart was breaking. I came to the realization that my son had a problem. I went to a doctor that same week and asked how to go about getting my son tested for speech and/or other problems. I was informed to get his hearing tested first, then to Duke University Medical Center for a free speech screening. I had no idea that hospitals did free speech screenings – why did his old Pediatrician not inform me of this? At his speech screening, which took about 30 minutes, I was told that he needed to be tested further. When he was officially diagnosed with Developmental Verbal Dyspraxia, I had so many different emotions flowing through me. I was elated to finally have a diagnosis and to know what was wrong. I was angry because he was a text book verbal dyspraxic child from the beginning- I felt the doctors that were in his life from the beginning should have pointed me in the right direction earlier. I was scared because I had no idea what this disorder was all about. I was sad because I didn’t want my child to have a disorder. I also felt very lucky to have such a special child in my life. November of 1999, we found an angel that changed our lives forever. Helen Kaye, M.Ed., CCC/SLP of Cary Speech Services started seeing Justin, and from the beginning made a huge impact in his life. He was 2 1/2 years old and still not able to say but 1 or 2 words. She began teaching him and his father and I sign language. Justin picked it up very fast and his demeanor changed instantly. Now that he had a way to communicate he was becoming a happy, carefree child. I cried the night I walked into his room and saw him signing in his sleep - I knew that Helen had saved us. Helen also helped to diagnose Justin with Gastroesophageal reflux disorder. Now that he is on medication for his reflux, he eats everything in sight and is in no more pain. The first time I took him to his pediatrician here in N.C. I informed them that he had Developmental Verbal Dyspraxia and of course they were not familiar with the disorder. I also asked about his eating habits and concerns and was once again dismissed. I informed them that his speech therapist thought he had gastroesophageal reflux. They never did test him for it, just wrote out a prescription for medication to treat it. Thank goodness Helen was able to diagnose him. Justin just recently turned 3 years old and he is talking more and more each day. We are now putting small sentences together and he is so eager to learn more. He will repeat anything and even looks into our eyes now, something he used to not do. Everybody has noticed the change in Justin, not just with his speech, but with his personality. He is a very happy, carefree, loving child. We still go to speech therapy 3 days a week for 30 minutes each session, and I am sure we will continue to go for at least another year - but as long as we have Helen, and as long as we continue to work hard and play hard, Justin will start school on time and continue to grow intellectually and emotionally.
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