Friday, May 20, 2011

...and we all fall down.

That is simply how I feel right now. This morning we had what was our last apptmt with Kylie's therapist through ITSJC. After the last couple of emails we exchanged, I realized this is exactly what was coming...a couple of days could not have prepared me for this, and I'm feeling like a puddle of goo.

Here is some background for you. When we got started with ITSJC, we were getting services for Kylie's speech delay, and during that time, our Family Service Coordinator picked up on some sensory issues that Kylie was exhibiting. How awesome that she was so intuitive and had the foresight to bring in an OT and others to help us with all of that...but now we all fall down.

Here is why:

This is the confusing all the areas they test for, Kylie is not showing anything to qualify her for services. But, it is those very areas...sensory, and anxiety, that has kept her receiving services, yet now they are not longer being considered...or perhaps they never should have been considered.

It is just a mess for me right now, Matt okay, now what? We have started seeing a new Developmental and Behavioral doctor for Kylie's anxiety issues, and he feels that services need to continue. So hopefully with his recommendation and evaluation, it will be deemed as sufficient means for getting Kylie's therapy reinstated. But then the flipside, is like okay...let's have them continue therapy, only because this doctor says so, and because they feel there is a need...or something like that.

You see, we were told by a neighbor, (that works in our school district's special education department, where children continue on once they turn 3) that if Kylie remains in this program through ITSJC, that she will more than like qualify through the school district. Our therapist says that was misleading isn't entirely true...that the qualifications are very specific. I have no idea what the full puzzle really looks like, because nothing seems to have been clear....why Kylie contd receiving therapy, when she now can not have it anymore, and whatreally makes a child qualify through the school district.

All I know for sure is that Kylie has come a long way. I think sometimes it may appear that I do not see the progress, but it is only because I have to be her advocate and fight for what she still needs...what we need to continue helping her with, and the support that comes with that.

So yeah, now we wait for the doctor's paperwork and so forth to come through, so we can forward it to ITSJC, and then they say okay...since your doctor says there is a need, we will come back.

If you could all just see how heartbreaking it is to watch Kylie be so anxious and stressed out when people we have been around for a while approach her, and she is terrified when we go to our church group if we try to get her to stay with all the kids, how she won't try new things because it is just overwhelming for her, and she will eat better when we are not around or won't eat when others are around.

No, I am not tyring to go on about the negative, but simply trying to prove why therapy is needed. She hardly eats snacks or lunch at school, has had a couple days of refusing to go potty at school, won't participate in some of the activities ast school, will not talk when she is stressed or uncomfortable to express her needs or why she is uncomfortable....all of these things are effecting her growth and development.

K, I feel like I am just rambling and not getting anywhere. I just want Kylie to have everything she deserves and be able to experience the same things as every other child..not just have the same opportunities, but be able to experience them openly and fully.


Rochelle said...

So sorry that this hit you without warning.
She can still qualify for the preschool program under a 504 status. I would love you guys to check out IDC too they have a great program for helping kids with sensory integration concerns.
Hugs to you friend, it will be ok.

Rochelle said...

So sorry that you were hit with this unaware. Great that she has improved so much that she doesn't qualify but I get what you are saying.
Look into 504 status for her for the EC preschool. Also, IDC has a great program for kids with sensory integration concerns. Let me know if I can help you discern the sped world any.

MJStump said...

Thanks so much Rochelle...this is just hard for me to handle right now.

Anything you can send me would be much appreciated...I feel like I relied on ITSJC too much, and now I have nothing to fall towards.

JSmith5780 said...

It's frustrating, our kiddos are so different than a "typical delayed" child. Their issues manifest in different ways that most don't recognize. Keep fighting for your little girl.

MJStump said...

Thanks so much for your comment Jen. The hardest thing is that these issues are so hard to explain, and you just need to see it to get it.

Still fighting...had the letter from the dr sent to ITSJC, so waiting to hear what they say. In the mean time, trying to get Kylie set up with the amazing place that a friend told us is the perfect place for Kylie!


Miniature Stump Copyright 2008 All Rights Reserved Baby Blog Designed by Ipiet | All Image Presented by Tadpole's Notez