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Marne – Alma, MIStars

Mother of William, age 12

marneThe very first time I successfully advocated for Will was in properly getting him diagnosed with apraxia. I first became a little concerned about Will’s speech at around 18 months old when his twin sister started having a few consistent words and was talking-babbling.  Yet, Will had nothing.  I had been a nurse and I knew twins were often a little delayed so I decided to just watch until his two year old well-baby visit.  After all, I thought, our pediatrician knew that I was a former nurse so she will take me seriously when I tell her I had been monitoring Will’s speech for a while. By two years old, Will had ‘Mmmmm’ and no words. I brought this up at his two year old well-baby visit and was told by his pediatrician,  “I don’t see anything to be concerned about. He interacts with me and is very social and has good eye contact. Boys are just slower to speak.”

Several months later I brought Will to the pediatrician for an ear infection and brought it up his lack of speech again as he had made zero progress. This time I was told, “Oh, he’s just quiet because between his twin sister and big brother he can’t get a word in edgewise. We will keep an eye on it.”  By the time Will was 2 1/2 years old,  I was fed up.  I made another appointment and said to the pediatrician, “Something is wrong. This child can’t speak. I want a referral to see a specialist.”  That doctor looked right at me and said, “There is nothing wrong with him except that he is being lazy and letting everyone talk for him. YOU have to MAKE him talk.”

I walked out of that office that day and I made an appointment with a pediatrician someone recommended to me.  In my first appointment with the new pediatrician, I said,  “I have been telling the doctor that Will couldn’t talk  and of my concerns since Will was 2 years old.  My child hasn’t made one single improvement in all that time. I am not leaving without a speech referral.”  I had an appointment set up with Early -On (our state early intervention provider) before I left that office.  I also had instructions from the new doctor to return in 6 weeks with my evaluation paperwork. If he didn’t like what he saw, the new pediatrician he was going to send us to a highly rated university speech clinic in our area.

The first words from the Early-On evaluator were, “Hmmm! I think he may have something called apraxia, but I have only ever encountered it one other time so we may have to get another opinion on that!”  It was such a relief to finally have a direction to go!

My personal motto has been this:

“You might not see it today.  You might not see it tomorrow, but every day is a step forward. Every day he is a little better and a little closer to typical speech!”

Apraxia Awareness Day 2