What I really mean when I tell people “he is not really a talker”…

Evan has been diagnosed with Childhood Oral Apraxia.  But saying he isn’t a talker is so much easier…until he gets frustrated and mad that we don’t understand him.  Then I feel the need to explain to others that he has apraxia.  He is such a funny and affectionate kid…it is a bit heart breaking that he has to deal with this.

Basically, all the lights are on (his therapist actually comments all of the time on how ridiculously intelligent he his) but he can’t get the words from his brain to form from his mouth.  It is a neurological condition, and most of the time, they have no known reason for why it occurs.  There are a lot of steps that happen in a split second for us to speak.  And he has a disconnect somewhere in that process.  It is like a stroke victim having to learn to speak…or walk…or grab an object.  They know what they want to say/do, but they can’t make their body do it.  Needless to say, it is VERY frustrating…and 2 year olds don’t always know how to deal with their frustrations in the best way.  And while I try to be very patient, it can be frustrating for mom, too.

We have been working with a therapist through ECI (which was a long process to get started).  She finally gave this diagnosis and said that he is one of the purest cases she has worked with (a lot of time there are other sensory or fine motor skill issues).  It was a big relief to have a formal diagnosis!  Unfortunately, she also feels that ECI is not able to give him the type of intensive therapy that he needs with a medical approach.  This is where it gets really frustrating.  I am having the hardest time finding a therapist that specializes in apraxia who has opening for new patients!  Our branch of TCH said that they can’t even get him in for an evaluation until late September!  After the evaluation, he would then be put on the waiting list for therapy!  Another therapist agreed to take him on until we told him that we aren’t on Medicaid.  Messed up, much?  Another therapist would be an hour of driving with 30 mins of therapy (at least 2x/week) and she had no real waiting room.  Practically speaking, I can’t imagine dragging along a 6 yo, 4 yo, 2 yo, and newborn for the drive and trying to entertain them in a business office hallway.    So basically, we have a diagnosis…and we know the kind of the help that he needs…but there is no one around us that can provide the intensive therapy that he needs now.

I did get a few neat apps for the Ipad that are for apraxia!  Guess that is something for us to work on in the meantime!

***I promise I will get around to a post about all of the fun, wonderful things going on in our life.  We have a lot to be thankful for!  I just had this on my mind…and family might be wondering why he isn’t a “talker”!

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