Friday, July 6, 2012

All Aboard for Word Camp!

Well kids, tomorrow we're off to the good ol' state of Michigan for three weeks!  (That's a long time).  Do you have any idea how much crap you need to pack for three weeks with two adults, a three year old and a five month old?  A buttload!  We're going to roll in there like the Griswolds with our van loaded to the hilt complete with luggage bubble on the roof rack. Oh yes, we have become those people.

Why the loooooooong trip you ask?

Well, do you have a minute?  I'm going to have to give you some background as to what has been going on in my life this passed year and a half.  My son Colten, who turned three in May, has apraxia.  According to CASANA, "Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.  What is often seen in a child with apraxia of speech is a wide gap between their receptive language abilities and expressive abilities. In other words, the child's ability to understand language (receptive ability) is broadly within normal limits, but his or her expressive speech is seriously deficient, absent, or severely unclear."

So my little muffin, cutie patootie that he is, is "normal" in every way except he can not speak like all his little friends can.  After over a year of intense therapy through Early Intervention, paying out of pocket for two private therapists, and doing countless hours of research and work with him at home, Colten has the vocabulary of a 16-18 month old.  He understands EVERYTHING but can not respond.  I can't imagine how frustrating it must be for him.  He can't ask a friend to play.  He can't tell his mommy if he has a bad dream.  I've never heard him tell me he loves me.  I've never heard him sing a song or tell a story.  He can't ask any questions (which is all most three year olds do) and he can't tell anyone how he feels.  In the words of his little friend Jody (who is also 3):  "Colten is a quiet boy, but he's really nice."

Colten 1st Time Bowling June 2012
At this point we don't have a prognosis.  Some kids get better and some kids don't.  Not knowing is really really hard.  But we are doing everything we can to give him the best shot possible.  

So, we'll be in Michigan for 3 weeks attending an intensive speech therapy program for Colten's apraxia.  We're calling it "Word Camp" and Colt is pretty excited.  I'm trying not to get my hopes too high, but am hopefully optimistic that this program will be exactly what he needs.

I'm not sure how much blogging I'll be able to do while we're there.  His schedule is pretty intense and I will be in all of the therapy sessions with him.  Down time will be spent exploring Michigan and giving his little mouth and brain a rest.  I don't anticipate a lot of "me time" to focus on my blog.  So hang tight, I know I haven't been consistent, but sometimes life has a bad habit of getting in the way of our plans.

Thanks for your patience, support, and for reading.

Thanks for giving me a place to be the more fun version of me that tends to get pushed aside to be mommy and therapist most of the time.  I started this blog as an outlet for myself; a place where I could write and think about something other than my son's disability, but sometimes these two worlds meet.  Like today.

Keep us in your prayers if you're the praying type... If you're not, send a little positive energy our way.

I know he must have so much to say, and hope one day he can tell me all those things he hasn't been able to.

xoxox

Jenny

9 comments:

  1. Beautiful post Jenn. Safe travels Sanzo's! Have fun at word camp Colten!

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  2. Beautiful post- you are such a strong and courageous person, and mother. We love you Colt!

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  3. What a doll your little man is! Beautiful post. We've just to have patience, right? Today I had a play date with an apraxia mom that I met online and it was neat to see our little boys play. She has been to see Nancy several times and swears by it. I feel like the universe is calling me to go. I wish you the best and can't wait to hear how it goes.

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  4. Know that you are in our prayers. You and Steve are doing your best. God gives special kids to special people. What ever the out-come, you will handle it and do it with style! Keep safe and Keep God!
    Love you all
    Marianne

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  5. This tugs at the heartstrings. I wish Colten and your family the very best!

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