Life is a Journey

My son, Alex, is 3 1/2 years old. He was diagnosed with Mowat-Wilson Syndrome at 5 days old. My son, Aaron, is highly active, extremely creatively bright. My daughter, Sydney, is verbal, talented, and snarkily beautiful. I have so many thoughts about life.... they don't hear me now.... maybe they will someday. :)

Tuesday, January 10, 2012

Day one... the beginning

So, a new year and a new goal for myself.  I need to document Alex's journey and our family's journey.  I was thinking, everyone and their dog has a blog now.... why should I?  In short, we were contacted by a publication  to reflect on how our family has changed because of Alex.  I could think of 100 ways we have changed, thus the blog.

Alex had therapy today with D.  She is so wonderful with him, but I digress.  We began trying out walkers.  I am so new to all of this and frightened to do something wrong for fear of causing a setback.  With my "normal" children I worried, but not about doing something detrimental to them.  The walker we tried today was Kid Walk.

Things I loved:  his hands were free to explore; he doesn't like to hold onto things- so this works nicely; it moves easily; he can sit if he needs to rest; there was chest and hip support

Things I am not sure of:  he liked holding/touching the large wheel; the wheels are so big, getting real close to a table would be hard; he liked sitting; he wanted to jump (typical mo for him though)

We also decided to have him in a stander during class time.  Although his legs are very strong, he needs to work on balance and static standing.

**D would also like for me to tuck his legs under his hips and support him up onto his hands (straight arms) to play.  If he tries to pull all the way up, tip him forward slightly to offset his movement.

So at home, during homework time, I had Alex in his Learning Tower- he was doing his homework.  (hee hee)
Two apps today BrightStart and Tap-n-See Zoo.  Aaron was on the desktop doing math flashcards and Spelling City.  That left poor Syd at the table, across from Alex, working on her math- fractions and double digit multiplication.  Each child was singing, and moving.  Syd says, "Mom, you know what?  He is just the sweetest little thing."  Yes Syd, yes he is.  And so are YOU.

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