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. :)

Friday, June 8, 2012

Almost the End of the Year!

Summer is just around the corner - we can taste it!

This is the time that I count down the days and I wake up in the morning praying that the day before was the last day of school.  I really can't complain as I only have 8 1/2 days left, but oh, I can't wait! :)

Cha-cha finishes school this Thursday and his Open House/End of the Year Celebration is on Friday.  He's made a lot of progress since his start on February 27th, but he still has a long way to go.  We met with his teacher and therapists on Wednesday, and they are going to pick him up for more PT as he hasn't made as much progress as we had hoped in that area.  His SLP was happy to say that he has language and it's coming along developmentally, but his articulation due to his apraxia is tough for him (as it will be).  As he adds more words, he drops more and more sounds and endings.  He is able to be understood in most contexts, but it's still very broken.

He continues to be a cuddly and sweet boy.  Lately he has grown attached to his baby, strangely named, Kick.  The other night he told his that the baby's name wasn't named Kick anymore, but we were to call it "Another Kick".  We often hear stories that the baby is sleeping and that we need to keep our voices down, and that the baby needs to be fed, "Rye now!" (right now).

I know his love for babies comes from his big sister - she plays with her Bitty Babies daily, the cute little girls at his at home daycare, and his new cousin who was born this month, Baby R:

(I love how he has his hands out to hold Baby R)

Our Bee-bee is growing up so fast:
Here she is at K-Orientation last June and this week for her "Q and U Wedding" at School.

She is growing anxious for 1st grade and at the same time, she is ready to be done with school.  She is doing so well - reading at an end of 1st grade level and still adding and subtracting numbers in her head.  She is a delight, just don't ask her to clean her room. ;)  She finished her first year of Girl Scout Daisies and her first spring soccer season and she is hooked on both.  She also had the honor of having her painted duck be in the city-wide Art Show:

Both kids and I went on an overnight camping trip up to NH a few weeks ago with the Girl Scouts and had a blast.  I hope that over the summer we can do another camping trip with hubby.

Our summer will be a busy one - Cha-cha will be at morning summer school and he will continue with 2 sessions of private speech a week.  We have a trip this month to go to the big hospital in the city to see Cha-cha's Developmental Pedi for a continuing follow up.  I signed him up for some preschool game afternoons through the rec department, so we will see how those go.  Bee-bee will go to some rec department morning camps with an art camp in the afternoon one day a week.  I'm still trying to figure out how to fit in swim lessons for the both of them, but I'm hoping we can make something work.  My parents have moved to a coastal town with property on the waterfront, so we tend to take full advantage of that. ;)  I foresee a lot of Thursday night trips up to see them so we can get an early morning start on Friday's to the beach.  We also have a big cruise coming up with my In Laws and a trip to NYC to see my best friend and her family.  It will definitely be a full, but fun summer! :)