Sunday, January 23, 2011


I was so happy when the speech therapist came out to the waiting room, after administering half of her latest assessment of Blaze, and told me that his vocabulary and understanding of single words was average for his age. Being told that your child is average may not seem like a big deal, but it is for us.

For years now, we have been told by various therapists, administering many tests, that Blaze is about two years behind developmentally, straight across the board. Since this amount of delay has seemed very consistent, my pat answer to this is that, "that's fine, because there will come an age, when a two years' difference no longer matters."

After his first grand mal seizure, around the time of his first birthday, the anti-seizure medication prescribed for Blaze was Phenobarbital, which he turned out to be allergic to. When I complained that he was developing large, red hives after each dose, I was told to give him Benadryl every time he took the Phenobarbital. Benadryl made him sleepy. Taking both drugs twice a day, meant he was sleeping his life away at a very important time developmentally. This only stopped when I asked the doctor to take him off Phenobarbital, stating that he had only had one seizure and, at that time, we didn't know if he would ever have another one, since the hospital had not uncovered a cause for that one. I was never told that there were alternative drugs, I was only told that I would have to sign a paper saying that I took full responsibility if another seizure occurred. It was 9 months later that he had another seizure, but that was 9 months that he was alert and learning new skills, like how to walk. During that time we also moved and found a new doctor, who was able to prescribe safer medicine to control the seizures.

Each seizure since then, has caused some minor setbacks, but the seizures have become less frequent as he's gotten older. He has now been over a year seizure free. He will always have to be medicated, because when he was 3 years old, an MRI revealed a permanent cleft ( a tiny, wiggly line, where nothing grew) near the speech center of his brain, on the left side.
For years, we said that he talked like Yoda. His syntax was all wrong for English. He had trouble with pronouns, as well. All pronouns were male until after kindergarten. He would also make up new ways of saying things, that would then become hard to break speech habits, like saying "us all" instead of "we". This took YEARS to fix. The only one of these deviations from normal speech that I thought was cute, was the summer ( when he was about 4) when everything he didn't like was described as being broken. I started writing down some of the funnier ones and ended up with a list that included, "broken breakfast" and "broken sister".

Blaze has overcome a lot of issues, both physical and speech related, over the years. I could never express the amount of gratitude I feel for the wonderful therapists who have helped him to walk and run like a "normal" child ( in nursery school, he used to come home crying because he couldn't run as fast as the other boys) and to express himself verbally in a way that other people can understand. He has such a creative imagination, I am so happy that he has the words and sentence structure needed to share those ideas with other people.

Don't get me wrong, it's not perfect. He still needs to work on his speech. For instance, Thursday, he told his therapist, "She don't have a son." He also sometime still says "no" when it should be "not", and leaves off the first sounds in many words. But, none of this takes away the achievement of going from 1 1/2 to 2 years behind in everything, to having an average vocabulary for a ten year old.

Average is wonderful!


Tammy said...

Such wonderful news and great progress! From one mama to another like this does good for our hearts. So happy for you. ♥

Sandra said...

Way to go Blaze!

Crafty Crow