Tuesday, October 05, 2010

The Apraxia Letter

The following letter was composed to inform Bubbles' class parents, all of whom are required to volunteer or teach in the classroom, about Apraxia and the quirks which accompany this affliction:

Hi Parents;
I have met most of you, and I am Bubbles' mama, Gwendomama. We were (lucky) last minute-ers to sign on to the I/S Kinder program, so I feel like I am still catching up with information, and there was so much to digest in those first two meetings, that I neglected to share what I intended to cover when first gathering with our wonderful group of parents.
I have had the opportunity to chat with some of you in person and explain to you that Bubbles not only has a late Fall birthday and will do 2 years of kindergarten, but he also has Apraxia.
I wanted you to have the option to read this if you wish to learn just a bit more about Childhood Apraxia of Speech, which is the fancy term for Bubbles' speech delay (which at this point, generally presents as halted, delayed articulation, phonological disorder, and word retrieval confusion). Which, in short, is why Bubbles sounds just a little funny.
CAS? Apraxia?
What does this mean? You can read more about it here, and/or you can read my very short, 3 bullet synopsis below. Either way, you will have a deeper understanding of Apraxia than you did 5 minutes ago, and that will surely impress your friends.

My three favorite quick descriptions of this complex 'oral motor planning and neuro-processing disorder' are as follows:
  • Early on in his Dx, I heard someone describe the affliction of Apraxia as: Not the child you want coming to tell you that the house is on fire.
  • My impression of watching Bubbles struggle with Apraxia is: You know how it feels to have something 'on the tip of your tongue' and not be able to access it? That's how Bubbles feels all of the time.
  • But the most amazing description of Bubbles' frustration is best coined by Bubbles himself, who said to his speech therapist: The words is there. They is just all tangled up on a string in my throat.

So....Bubbles has to take time to get his words out, and he sometimes gets stuck. For instance, he will exchange words for something that sounds familiar to him if it is not a familiar word.

In the past month alone, I have had to interpret: 'gadget' for 'shadow', 'indolin' for 'Indian', and 'helicopter' for 'elevator'. Just today he asked me why are there clones in the movie, 'The Polar Express'?
Of course I responded, "What? Clones? What clones?"
And he said, "Yes, they all have those Christmas hats and they love the Santa!"
I realized right away that he meant 'elves'. I don't know why he used that word....it may have been some combo of 'clowns' and 'cones' (hats) and/or him hearing the word 'clones' recently (has a 9 yr old sister)...all I know is that I have learned to think outside the linguistic box when interpreting him.
Oddly, other children have often easily interpreted for him, which is particularly lovely because at this age, there is not one speck of judgment among them when this is done. It is, in my mind, an act of humanity and an insightful gift into who our children are at this young age. On a recent drive home, he was desperately trying to tell me something.
"BISMAL!!" he kept saying. 'Dismal? Abismal?' I kept asking him for any close approximation but could not figure out what he was saying. Finally, our five year old carpool mate spoke up. She said, "I know what he's saying. It's 'invisible'"
Bubbles responded by saying, "Yes!!! INBISDIMAL!!! Ank you, friend!!"
That is a classic Bubbles moment.

The words are there. He just can't always get them out intelligibly or in the syntactically correct order.

Another bizarre thing about Apraxia is that the oral motor delay component means so much more than you can see. Bubbles has very selective eating habits, which is very frustrating for the parent of a teeny tiny skinny boy, but understanding the oral motor issue does help to explain his pickiness. It takes about 14 coordinated motions with the tongue to swallow any bite of food. When he was almost three, Bubbles still could not make about half of those motions. Which explains why he would never eat baby food (would have choked him) and would only accept dry, quickly dissolving foods. It also explains why he could not string 4 words together before intensive speech therapy.....his mouth could not actually make those sounds.
It also explains his extreme pickiness which has become a bad habit.

FYI, Bubbles, if you are the volunteering parent, will ALWAYS choose the 'meat' option, even if he cannot tell you this. He will approach any new food with caution and perhaps rejection, but because of his history, I know that being surrounded by his peers eating diverse food offerings, eventually he will try new things, which is why I am adamant about not packing him a different lunch. If he does not eat, he will when he comes home. It is more important to me to know that sharing lunch with his peers is great exposure, and even therapeutic.

So...that's the optional glimpse into the world of Apraxia.

And by the way, I cannot wait to play with our children on Tuesday - they are so fun in music class.....I love this group of ours!

Thanks for reading.


heidi said...

Today he told me, well the old Italian guy at the restaurant, that he has 4 names. Bubbles, Robin, Hood, last name.

mamadaisy said...

Good for you for sharing with the class. :-)

I have been drafting a letter for the parents of my child's classmates that goes something like:
"If your child or your child's siblings become ill with chicken pox or measles, please notify the teacher or school nurse immediately. My child is immunosuppressed due to medication for a non-communicable disease. Exposure to chicken pox or measles can be life threatening for my child."

I wonder how the parents are going to react? Let us know how your class handles it.

Anne said...

i'm so so glad you're back.. i kept checking in periodically hoping you'd be back online some day :)

we are in the process of seeing the neuro psychologist for my oldest daughter.. wish us luck :(


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