Friday, June 29, 2012

One Year Later

Hard to imagine that a year ago, Cha-cha had his big evaluation in Boston and Hubby and I were waiting for the results of that eval.  We knew in our hearts that it was Apraxia.  We were told by EI that was what they thought was going on, as well as his ENT who had said he would be surprised if it wasn't.  As much as we were prepared to hear those words, you can never be prepared enough.  The blow stings.  The dreams you have for your child seem to fall down around you.  You get angry, you grieve, you get sad, you beat yourself up about the could haves, should haves, would haves.  Then somewhere, somehow, you brush yourself off and do what you know.  You love.  You learn.  You help.  But you always go back to love.

We've grown a lot in the past year.  I've learned to be a better mother and a better teacher.  We've read and started talking to others who have children who also have Apraxia.  We raised money for CASANA.  We registered for the National Conference.  We sat and tried to be patient with Cha-cha as he struggles to tell us his story and we tried to figure it out.  We sought out new treatments, we graduated from EI and were introduced to Special Education in the Public Schools.  We found a fantastic, young Speech Pathologist, who will adapt sessions in anyway that will get the most attempts at language for our Cha-cha.

Then there are the ways that Cha-cha has grown.  He is now 3yrs 4 months and a mini giant at 3feet 5 1/2 inches and 45 lbs.  He can now touch the bottom of the shallow end at most pools. :)  A year ago he had 7 utterances with no words for mommy, daddy, his big sister or himself.  He can now say Mommy and Daddy, along with Bee-bee's correct name and he can say his first and last name (last name is still garbled, but I'll take it).  He can now speak in long 4-5 word phrases and has even gotten up to an 11 word sentence!  In context, the three of us can understand him about 85% of the time.  Close family, about 60% of the time, and strangers anywhere from 25-40%.  When people who have known him since he was younger see him, they are completely amazed at his ability to communicate and his desire to communicate.  Sometimes, they are completely shocked - I know, I can read their faces. ;)  He has come so far, but there is still a way to go.

We have some new challenges to add to our plate.  Not as significant, but big enough that need to be addressed.  Cha-cha's SPD gets in the way of some things.  He has low muscle tone and the developmental pedi believes that he has issues of gross motor planning that comes from the Apraxia.  He has always been very cautious and deliberate with his movements, but it's now effecting him more in the areas of playing on the playground, manuvering stairs appropriately, and joining in with other kids with age appropriate games.  The PT at school is also concerned and has picked him up for weekly sessions.

He also has a lot of anxiety going on - mostly separation anxiety.  He won't separate from us in his therapy sessions.  I don't have to say a word, he just wants to make sure I'm there sitting in the corner and present.  His Tiny Tots Camp this week was close to a nightmare.  He was the only kid who would not separate from his caregiver.  I even had Bee-bee stay inside the fenced-in area with him, but he screamed and cried.  I did the whole walk away and leave him and it was worse.  He would only participate if I held his hand and the game was Fishy, Fishy, Cross my Ocean, Simond Says or playing the parachute.  After thinking about it, those are the things he's comfortable with.  He isn't comfortable kicking, throwing or catching a ball.  He isn't comfortable with new people (even though the counselors are fantastic!).  Too much chaos is overwhelming for him.  He spent a lot of time watching the other kids playing and being content by that.  I can imagine that he's anxious about having to talk to other adults if one of us aren't around because of his Apraxia and his demeanor (kids are easier for him to talk to).  We will continue to work with this - more playdates and playgroups, more trips to the park, more ball play in the backyard and more stair climbing. 

It's been a long year - long but good, and a productive one for him.  He really is a delightful little boy who still gives the best sloppy kisses and the fiercest hugs around. :)

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