Sunday, May 17, 2015

Coming out

My kids are so much more than apraxia, so much more.

5 words to describe Landon:  bright, hysterical, sweet, sensitive, affectionate

5 words to describe Logan:  crazy, daredevil, concerned, fun, and aware

Both brings many strengths into our home.  I watch the two of them play together and am so happy for that.  They take turns nicely, share toys, and help each other.  Yes, they also push or hit, but they are brothers.  They truly care about each other and look for each other if one is not there.  I am thankful for that.

Apraxia Awareness Day just passed.  It is only the 3rd Annual.  I sent an email out to all my work staff about the day and urged them to wear blue and white in support of this disorder, and reminded the staff that we do have 3 kids at Delaware diagnosed with CAS. Every time we have a meeting about one of those kids and I say X has a dx of apraxia of speech, the teacher has never heard of it. every.single.time.
Hopefully not next year.

Ironically, all the kids I have with CAS are super smart.  That's a good trait of this dx.

So I decided I will have to come out in some way.  I first formed a group where I could post videos, accomplishments, and posts, and not feel bad that I am rejoicing over a CV syllable.  I have a good group of people interested in our accomplishments.  Then the day came,  I put up a simple wear blue due to this day and I love two special little boys with this... and invited people to message me if they wanted in the group.  I got some nice messages.

Awareness is not bad.  I do want others to know my kids struggle AND work hard.  They do both.  They are AMAZING.  There are days no one talks at all and my heart breaks the whole day, begging for something, and then there are amazing days, with lots of speech.  This disorder is so up and down, that it could kill you.  I am finding more people in my situation and their kids are ok.  Are they 100% typical, no, but they make it ok, and that's my goal.  They don't need to be a huge sports star or win the essay contest at school. They need to be: happy, confident, and know they are loved.  That has always been my goal.

We don't need sympathy, just prayers.

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