The Downside of Starting Over

I had a few fears when it came to leaving Florida.  We finally had a really great therapy team for Kennedy.  I was already feeling anxiety over the transition, and we hadn't even set a date to move.  I heard mixed things about North Carolina's Early Intervention program.

Fast forward to this week.  All of my fears and nightmares have come true.  We had Kennedy's evaluation with the Children's Developmental Services Agency.  I'm not sure that it could have gone any worse.  Kennedy was not in a showing off sort of mood.  She was her usual happy bad social self.  So when three strangers came in to the house she greeted them and proceeded to run, dance, smile, and play games with them.  She explored their "toys" aka tools.  None of what they had were actually toys.  In fact, they gave her real dimes to put in a real bank.  Which she did.  But when they handed her a Nerf ball she proceeded to investigate it, squish itt and check out the part that had a bite out of it.  She didn't throw the ball.  But she did throw her ball 5 minutes later.  Little did I know- tat didn't count.  The evaluators had to see her complete certain tasks. With THEIR tools only.  So, even though she put blocks in her shape sorter, she didn't put THEIR blocks in THEIR cup.  She also didn't stack their blocks in the form of a train, and push it across for floor while saying choo choo.

At the end of the evaluation they "freed her" - their terms not mine - to play.  She did not succeed at being a circus animal who performed tricks on command.  They told me how "severely delayed" she is.  I argued that their methods of evaluating would not provide an accurate depiction of my child's abilities.  I'm not one to exaggerate things she can do, especially state evaluators.  In Florida I usually had to exaggerate the opposite way and minimize what she could do.  I KNOW this evaluation was ridiculous and seriously flawed.  I know she's not as severely delayed as they make it out to be.  But there's something upsetting about three strangers making these comments about your daughter that's very upsetting.  I had to hold back tears.  We work so hard - she works so hard - and these women minimized everything she did.  She turned the pages in the book, one at a time but only used one hand.  She walks, but doesn't walk up the stairs.  On the plus side, she scored above average in social emotional skills - I'm not surprised, this girl is a social butterfly. She also scored on the higher end of average in self adaptive skills.

The icing on the cake was their recommendation for services. Physical therapy, speech therapy, occupational therapy and developmental therapy every week.  Our insurance benefits would max out in 3 months, leaving us with the cost of 100% of the therapy, at roughly $100 per hour..  They justified this by saying we could obviously afford it, based on the home and neighborhood that we  live in.  I was shocked.  I explained that I would NOT be agreeing to their recommendations based on such a flawed evaluation.  I made the determination for which therapies we would like Kennedy enrolled in, based on our last trip to Hope Haven and conversations with out therapists before we left Tampa.

I know Kennedy is amazing.  She is a super star.  I could not be more proud of her.  I was especially proud of her when they stood up, and she said, "bye!!!" and proceeded to walk them to the door while waving and saying "bye" over and over again!  Apparently I wasn't the only one who had enough of them.  They were barely out my front door when I burst into tears.  It's days like that when I really wish Kennedy could just be a kid, and not have to deal with things like therapy, evaluations or working so hard to achieve milestones that come so easily for others.

Full Disney recap and photos to come in the next few days.  :)