Wednesday, January 16, 2008

How long?

When you have a child with special needs, of course it can be tough some days, but you love your child. You treat them like the rest of your family. You see your child as a child first and not their disability. You become their advocate and make sure they get the best medical care available to them. Your life goes on, but you do have certain problems that arise here and there. For some parents, their children have a lot of medical problems. For some it is problems with their child's education, and for some like myself it is behavior problems. Whenever I get upset, sad, frustrated etc about Rylie having Down syndrome, it's not her that I'm upset with or sad about or frustrated with, it's the SYSTEM so to speak. It's dealing with doctors, caseworkers, therapist,and paperwork. Anyway here is where I'm going with this..............................

Back in August(5 months ago) we contacted our IU and told them we would like to have a behavior specialist for Rylie. Three weeks later, We were contacted by an outside agency(wrap around) and told that in order for Rylie to get the services they need to evaluate Rylie and do an intake. Three weeks later I brought Rylie out to this agency and told the intake worker all about Rylie's behavioral problems. Three weeks after that they sent another worker out to my house which I wrote about here and I told the worker all about Rylie's behavioral problems. Another three weeks go by and the same case worker goes out to Rylie's preschool and the teacher tells the worker all about Rylie's behavioral problems. Then the worker puts her evaluation together so that we can meet with the psychologist three weeks later and tell him about Rylie's behavioral problems. Then the psychologist diagnoses Rylie with Disruptive Behavioral Disorder , by the way this took him three weeks to do. Then we meet up again at the agency and we go over Rylie's behavioral problems. And then three days later they tell us She is approved for a behavior specialist and a TSS(therapeutic staff support). Three weeks later the behavior specialist contacts me and comes to my house to meet Rylie. Well guess what she wanted to know-What is Rylie's behavior like? GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!
So, now she can come to my house every week and I can tell her about Rylie's behavioral problems. And maybe someday (perhaps three weeks from now)the TSS will contact me and I can tell her about Rylie's behavioral problems. Oh, and also the behavioral specialist(who I really do like, and gave her this same speech today, and is really going to help me out, and who agreed that this was ridiculous) told me Rylie really should have a Mobile therapist to help her with her behavior, but she would need to be evaluated again.

Ya know, Rylie's behavior has actually improved these past 5 months and I give Vince and myself the credit. Who else could I give it to?

Why does everything always have to take so long? Why do so many people have to get involved? Why is it so hard to get a doctors appointment when you need one? Why do you have to argue at IEP's to get what your child needs.

If you read this far , thanks for listening, I'm just having one of those days.

2 comments:

Deb in OPKS said...

That's the government for you! Argh. We've been lucky so far, but we just got started really. I hope you get it straightened out soon. Like 3 weeks from now :)

RK said...

I'm sorry I'm so late in getting around to catching up on the happenings in your family!

This is what I'm afraid of...what you've described. For the most part, we've been fortunate with doctors and such. And we've only been in this surreal world for 14 months, but this element of being an advocate for our children is one that obviously becomes more complicated as the child can do more and needs more.

I say you guys deserve ALL the credit for any improvement!