Saturday, March 28, 2009

Proud, Confused, and a bit angry.

The past two weeks have been re-eval week for Ella at her school. I am happy to say that Ella has made HUGE improvements in the past year!! I mean HUGE!!

On Friday her Occupational Therapist (OT) did Ella's testing. The results kind of blew me out of the water. This test shows it's results in deficits, zero being average for a "typical" kid and then going down into the negatives. So, for Ella's self-help skills she scored a 0.00, meaning she is right on course with her "typical" peers, how freakin awesome is that? For her grasping skills she had a deficit of 0.33 and for her eye-hand coordination skills she rated a -1.33, bringing her score/average to -1.00

Great right?? Apparently not. This score officially disqualifies her for occupational therapy services when she enters pre-school. To get OT in school the child has to have a deficit of -2.00, and in private practices here in Spokane it needs to be a -1.5 So, I guess I should be thrilled that they think she doesn't need OT, but SERIOUSLY??? The kid can not even use her fingers correctly. Her new thing, when people ask her her age, she holds her hand out to me and whimpers because she wants me to put two of her fingers and her thumb down so she can hold up two fingers. She canNOT correctly do signs that involve her fingers etc. So, the plan is that they re-evaluate her OT abilities 6 months after she starts to see if she has regressed or fallen behind her peers enough to qualify. This makes no sense to me.

We are not supposed to put any limits on our kids, work with them, teach them encourage them. But not too much. Because if you do than you won't qualify for help. Ella has Down syndrome, a concrete diagnosis, one that will not change, one that puts her at a disadvantage compared to "typical" kids, always. Why is that not enough to qualify in preschool?? Whatever. I'm really scared now to see what her scores are for her speech and physical therapy evals. I have her speech results but they aren't scored the same so I don't know what the cut off for services is. Let me tell you, all hell will break loose if they tell me the kid doesn't qualify for speech therapy........

So, yes I am annoyed and a bit angry. BUT I am SOOOOO proud of Ella and all of the hard work she has done in the past year!!!!!!
Here are some pics I took Thursday morning before leaving for Speech Therapy at our house, then the pics of her in the blue swing are her in the therapy room after speech at school.




























13 comments:

Mary said...

Well I guess we didn't need a test to tell us how amazing Ella is, but it is sure fun to see actual proof of how well she is doing. I think I have voiced my opinion on how crazy I think this "qualifying" for services thing is when the kids have Ds. Maybe I need to add starting a preschool for high achieving special kids to my to do list. Right after I finish the book I've been talking about since Christmas. Man I got to get movin.

Heidi said...

Ella is so cute! That's so great that she is doing so well. Way to go Ella!

I have been following your blog for a little while now. Thanks for sharing a little bit about your life and family. I've enjoyed getting to know you!

Jennifer said...

Her hair is just SO beautiful!!!! It makes me kinda wish Van had strait hair! :) That's really great about the Evals! She's so amazing. :) I think she does way better than Van on eating and drinking. Van can't drink out of a cup to save her life. ha ha

Kristen said...

I agree that it does not make a lot of sense. I wish they had the same perspective as the services we have here for Cayman. Even though she tested right on track for speech they put in her speech therapy as a preventive to falling behind. Why wait for there to be a problem before doing all that can be done?

I am sure your heart swelled with pride seeing her improve so well! What wonderful news!!

Bethany said...

I hear ya sister. The whole thing is a joke. We have been fighting for speech since P started school. Right ... she is 3 and only has a couple words, most of which are approximations. They are finally agreeing with us, but it is a battle!

datri said...

Love the pics! It's such a catch 22. But Ella's doing wonderfully! We want our kids do to well, but not TOO well. So frustrating. Of course, we're on the other side of the coin....Kayla consistently scores so low on everything it doesn't even register -- they just put down below 1/10th of 1 percentile. We get a TON of services, but I certainly wish we didn't need them.

Loren Stow said...

Well done Ella Grace! I think she is just so beautiful!
It is a difficult situation - I think that if your country offers services, the diagnosis of Down syndrome should be the only qualifier.
On this side of the world however, we don't get any assistance at all - but that is my country and our problems!
In a country where your taxes are based on such services, you should get what you pay for - literally!
I hope that everything works out and that Ella continues to be such a super star!

Melissa said...

I have to say that those are one of my FAVORITE PIX OF ELLA! Very cute;)

WOW, I'm so sorry for what you are going through. I am on your side & agree with you. I feel your frustration & it would break my heart to see her take any "steps back"! How rediculous! The DS DX should be enough!!!

Good luck with everything...You should be very proud,she IS amazing;)

Anne and Whitney: Up, Down and All Around said...

I think the title of this posting is perfect - I am so proud of little Ella for such awesome scores in her OT eval, but that is SO ANNOYING (to say the least) and unfair that she does not "qualify" for OT at preschool, when as you said, she has a concrete diagnosis of Ds which should be an automatic qualification for services... any early intervention/help/support our kids can get will make all the difference, so it seems like a total rip off that you have to wait 6 more months to see if she then qualifies... when in the mean time you hope she doesn't because you will continue to work with her and she will hopefully make huge strides, but at the same time you do hope she qualifies just so she gets the extra help from therapists/professionals! FRUSTRATING, and at the same time awesome that ella is doing so well :) Yeah Ella!!!

Tsquared417 said...

Isn't it crazy how all of this works? I'm glad she's doing so well...let's hope she still qualifies in 6 months though.

I love the pictures. She really is a beauty!

Aunt Tami said...

Wow!!! Way to go Missy!!! Well, we always knew she was impressive...but wow!! That is great, but what a rock and hard place! You want her to do her best, but then her best disqualifies her for the very services that have gotten her so far!! Just doesnt make any sense! I guess, unfortunately, I hope she qualifies in 6 months???? I just love the pic of her striking a pose on the coffee table! BTW, nice new couch! I love it! You need to send us some pics of your new house on the inside!! Please!! I love the pic of her peeking out of the swing too! Again..I just love the hair!! Wish Shaylin's laid as nice as hers!! Love ya's and miss ya's--Aunt Tami and family

Little Miss E said...

That is frustrating. They cut off at points they really shouldn't cut off at! It puts the kids in the "I really could benefit from more help, but I can't get it because I'm too good." It's silly. I'm sorry you're so frustrated, but way to go Ms. Ella!!

Yo Mamma Mamma! said...

Our EI specialists keep warning me that my child could not test into our district special needs preschool program. YIKES?!!!

I feel for you with Ella. She is amazing - what a little beauty!