Apraxia for Dummies…

Occasionally when we are out with Eli we’ll get the ‘look.’ It’s the look that all parents of children with special needs have gotten at one time or another; the look that we absolutely despise.
It is an expression mixed with pity, annoyance or curiosity; depending on how Elias may be acting at that moment in time. I try not to lose my patience or shoot them back a look that could kill and I do my best to realize that these looks come from not understanding what they are seeing. Usually I get them the most when Eli is really happy and starts saying “eeee, eeee, eeee.” Or maybe it’s when we are standing on line at the store and people ask him questions and he gives them a blank look or he just babbles some unintelligible baby babble at them. Not would you expect from a 4 year old that is off the charts in both height and weight.
Sometimes I wish that they would stop staring at my kid as if he was some sort of circus freak and just ask me about him. I would tell them that he is just a regular little boy, that he isn’t dumb or stupid. That he laughs and gets his feelings hurt like anyone else. Then if they weren’t completely mortified I would give them a little lesson in apraxia 101.

The Childhood Apraxia of Speech Association of North America (CASANA) and CHERAB are invaluable resources to understanding Apraxia and how to try to treat it.

According to CASANA’s website the definition of childhood apraxia of speech (CAS) is as follows:

Childhood apraxia of speech (CAS) is a neurological motor speech disorder in which a child has difficulty rapidly, accurately, and consistently producing and timing the movement sequences needed to produce speech. CAS is not due to having weak muscles for speech. There are several characteristics that are generally accepted to distinguish CAS from other types of speech delays and disorders.

However, speech is not the only area of development that is affected with CAS. Many areas such as feeding, gross and fine motor issues can accompany the speech issues.
In Eli’s case all of these areas are affected. He has always had trouble with activities involving fine motor movements such as puzzles or coloring. It is difficult for him to do so he gets frustrated. Therefore, he would rather not do the activities that he finds challenging. If a therapist or teacher tries to make him do it then he will begin ‘the behaviors’… Eli will start to cry and throw the puzzles /crayons on the floor; he will drop to his knees and refuse to move. Maybe he will try to be charming and just giggle his way out it and look so impossibly cute that the teacher/therapist will give up. If that is the case then Elias has won temporarily, but it can seriously affect his future if he continues this behavior. First of all he won’t learn anything if he doesn’t cooperate. Second; he will be given labels that are not necessarily applicable to him. The key is finding the right combination of therapists that will NOT give in his handsome dimple filled smile or strong willed attitude.
I comfort myself with the fact that we caught this early. All the therapy that he has receives (occupational, speech and maybe physical therapy) will hopefully give him the tools to succeed and eventually be mainstreamed.

The prognosis for CAS? After reading the material in the link you can see why I would have mixed feelings. There are reasons for hope and reasons for worry. When the feeling of anxiety for the future begins to over power my body I simply turn off the computer and remember that I am not alone. So at the risk of using a cliche (to some I might even sound corny), I put Elias in God’s hands. I pray often for strength to keep fighting for him and not lose my patience when he is driving me absolutely insane. A pilgrimage to St. Jude’s healing mass (where ever I can find one) is done every year. It is this faith in God that keeps me going.

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‘Team Elias’ at our first annual CASANA Apraxia Walk in Bridgewater, NJ
I had just gotten his diagnosis 2 days before the walk.

So after all this I think that person that I plan on teaching Apraxia for Dummies to…. He’ll either leave more sensitive to dealing with the differently abled… Or he’ll run away petrified for his life after dealing with me and call the cops for harassing him 😉

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