Friday, December 14, 2012

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.  :)

6 comments:

  1. Hugs. That sucks. I don't think Cora could do ANY of the things that they'd want her to do in that kind of evaluation. And how is it that you have to pay for EI? Isn't it mandated to be available?

    I know you've fought a hard fight for therapies. We get them too, but in all honesty, I don't see that they've done that much more for Cora that I could do on my own. I'm happy for the input, for sure, but honestly, I doubt Kennedy would suffer all that much. She really doesn't seem "severely delayed" to me at all.

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    1. The Government says the state has to have an EI program, but doesn't mandate how it's administered. So in NC you use your insurance. And once it runs out, you're pretty much out of luck, Unless you qualify financially or have Medicaid, etc. it really sucks! But I do agree with you, I'm not really sure how much they do that I can't. It's nice to have the guidance, and the encouragement/feedback, but I don't think they are setting her future in stone. Especially when we have others we can consult with.

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    2. Hey Jennifer! Yep. We lived in NC for a little while and getting any type of services was a joke. I remember needed to get electric set up and they wouldn't even tell me what *day* they would be out. They said they would get to it when they could. LOL I can only imagine with EI. If they are going to charge your insurance and then charge you that kind of money...I would just go private. But, you are right, you can do it yourself. You are an awesome mommy and just the bit I got to meet Kennedy she is a rock star and in my "non professional" (even though I live with a child with down syndrome and one without 24/7) she is NOT "severely delayed"! Sounds like these jokers are just trying to milk the insurance and then you! --Katie Abel

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  2. Hi Jennifer,
    I know you don't know me. My name is Sonja. I live in Virginia and gave birth to our 10th child this past Novemember.And I just turned 40. LOL! I saw your name and blog address on the "justmommies board"I clicked your blog the day the nurse called and told me our baby would be born with Downs.My husband and I were devastated. I red your blog and after only a few hours I no longer cried about it.This may sound strange but we were actually fine with it and looking forward to this child and adventure and felt VERY WELL educated thanks to you.
    Kennedy is beautiful and a blessing.I had no idea what a joy downsyndrome children can be. I have studied a little bit and from what I can tell she is actually very ahead of the ball game as far as "Downs"is concerned.I am soooo sorry about the therapists in NC. I wish I could reach out and hug you. It sounds crazy what they said about her and having to use THEIR blocks???What? why? who cares, as long as long as she does it on any blocks. Good grief!
    I understand the differnt opionins of different evaluators are hard to handle because they are all so different. We have dealt with issues of differnt educational stupid opinions because we have been homeschoolers for 15 years.Drives us nuts!
    Anyway on Novemeber 2,2012 we welcomed our"surpise"chubby 8lbs 11oz little girl "Emma Faith" into the world and found out she did NOT have downs.
    But if she had we would be just as happy. God brought Kennedy into you and your husbands life. And what a blessing she is and Caleb is adoable and HUGE! :) Our 1 year old grandson is about his size!Caleb is gonna be a big guy. Your family is beautiful and the children are so sweet. I pray that God will send you some kind and compassionate therapists. Please keep blogging.We love to hear and see all the new things gong on in this amazing little girls life. I pray it brings othe parents expecting a downs child a lot support and ease their fears and not abort these children.Because of you guys one of my daughters would like to marry a man open to adopting a downs baby or child. I pray you are able to relax and have a blessed Christmas. God Bless,
    Sonja in Virginia

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    1. Thank you so much for your beautiful comments and congratulations on your daughter, Emma! And yes, Caleb is huge!!! I can't believe he's almost as big as Kennedy with 17 months apart. No one believes he's only 4 months old!

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  3. Its me sonja again. I just read my post and wanted to apologize for all the typos and grammar mistakes. As you can tell I am sleep deprived from having a newborn in he house after a 7 year brake between children. We thought we were done with babies, so Emma was a BIG and happy "surprise" for us at our ages.
    Take care. God Bless,
    Sonja in Virginia

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