In case anyone is wondering how Behavioral Therapy is going

Dear Ms. Blank,

Thank you for addressing my concerns regarding Blank. As I have already let you know during our previous phone conversations on 4/25/08 and 4/28/08 I am completely dissatisfied with the services of the TSS and BSC that my daughter, Rylie Blank received . As you are already aware, blank from blank scanned and emailed me a copy of their latest treatment plan and an Outpatient Services Authorization Request form. I was suppose to sign these forms and fax them back to her. I am writing to let you know that I refuse to sign these forms because I do not completely agree with them. I especially don’t agree with how Rylie’s behaviors are listed as severe and that her relationship with her peers is poor.

Rylie is a beautiful, sweet little girl who is friendly and gets along with her friends and family wonderfully. She is very happy and enjoys life to the fullest. Rylie does have trouble with her attention span and following directions. She also has tantrums when she doesn’t get her way and she can be defiant and hyperactive at times. I requested Wrap Around Services so that I could get some help and direction when dealing with Rylie’s behaviors. The Wrap Around Services I received from blank were no help at all.

The BSC, blank put together Rylies original treatment plan. I agreed to it and implemented the plan with Rylie. However I feel that the BSC did not. She never set up an award system for Rylie or helped create charts for visual guidance as it stated she would in the treatment plan. I only met her in person a few times and during those times I don’t feel that she helped. As far as I know all she did was go to Rylie’s pre school and observe her.

The TSS, blank did not follow the treatment plan as far as I could tell. She went to three of Rylie’s doctor appointments, two messy playtimes and there were a few visits at our home to do some craft projects with Rylie. During each of these times she was late. I paid money out of my own pocket for blank to do Messy playtime with Rylie at the local playground. And blank decided to resign from Rylie’s case without notifying me. The only reason I found out that Rylie no longer had a TSS was because I called blank to complain about the TSS not returning my phone calls. At that time blank told me that blank resigned from my case. One week later , I received an email from the TSS stating that she resigned from Rylie’s case because she felt that she was not qualified to meet Rylie’s requirements. So, that means to me that blank sent an unqualified TSS out to work with my daughter. I do not take this lightly.

Now as far as the Life Domains Psychological Evaluation conducted by blank and blank from blank, I told you per our telephone conversation on 4/28/08 that I would like to use this evaluation. I have since decided against this. Since blank already sent an unqualified TSS to work with my daughter, I don’t think it would be in our best interest to use any evaluation from any staff member from blank. I understand that in order to continue services with another provider Rylie may have to be evaluated again.

I am requesting that you find me a new Wrap Around service provider. I am requesting that I could meet with the new TSS, BSC, and Mobile Therapist before I have another evaluation done on Rylie. Everybody always wants to interview me and evaluate my daughter. I think that since I received such awful service from blank, I should be able to interview and evaluate the next group of people who will be working with my daughter before I let them.

Sincerely,


Valerie blank and Vincent blank

Good News/ Bad News- Behavior Therapy Update

Good News- Last week I met with the behavior specialist and TSS worker to go over Rylie's treatment plan. After the meeting I feel confident that we are finally getting started. I feel confident that the plan will be helpful. We are going to start using a lot of visual charts and a choice board for her. I will share the charts on this blog once they are finished. I will also share whatever works in regards to her treatment plan. The TSS worker accompanied me to Rylie and Karlie's dentist appointment on Saturday morning. Rylie was seen first and she did really well. When it was Karlie's turn the TSS worker took Rylie back out to the waiting room while I stayed with Karlie. I had a few questions about Karlie's teeth and I was able to talk with the dentist in peace, without having to chase Rylie all over the place. This was great, this is how a TSS worker helps the parent. A TSS worker can also accompany your child out in the community ei, movies, workshops, sports, playgrounds, etc. As long as the TSS worker is out in the community (where she can be seen by other people). The parent(myself) doesn't even need to be present. Of course, I will have to get to know the TSS worker much, much better before I leave her alone (even in the community) with Rylie. I don't need to be present as along as there are other adults around. I can't leave her alone in my house with Rylie or anything like that. I think having a TSS worker will help reduce my stress. So, I feel like we've got the ball rolling-finally!

Bad News: I really have no choice but to get her evaluated by a psychologist again.
I called everybody I needed to and complained. The director and supervisor I talked to were very nice and felt bad for me. I think they were sincere, and they agreed with me that this whole process is wrong, and a lot of aggravation. What it comes down to is - since the services are state funded, it is the state who requires the evaluation again, and there is really no way around it. However the supervisor talked with the psychologist already and explain to her my situation. They said the evaluation will be as quick and painless as possible, and from now on an evaluation will only have to be done once a year. I guess I can live with that. I will also say that I think some people are getting in trouble for everything taking so long. They are also required by the state to have certain things done in a certain amount of time and they weren't.

Now, like I said , I feel confident that after my meeting on Thursday, help is finally here, but if I am not satisfied with services by the time of the evaluation(next Month), I will not have her evaluated.

Also some more good news. Rylie has a behavior specialist at school. She is wonderful and so sweet. She knows how much trouble I have been having with the "system" and she actually had a meeting with Rylie's therapists and teacher to discuss ways they could help me incorporate what they are doing at school in the home. So she gave me a lot of great ideas.

GRRRRRR!!!!!!

I can't believe it. We are finally getting together with the behavior specialist and the TSS worker to go over Rylie's treatment plan on Thursday. Well, the behavioral specialist called me today and said that we need to set up a psychological evaluation for Rylie in order to continue services. What services are we continueing??????? I have yet to get any help!!! Rylie already had a psychological evaluation in November. And it was already established that she qualifies for services. I told the behavior specialist, that I am sick and tired of this. I have been waiting forever and have yet to get any help and now this nonsense. I told her no way is she being evaluated again and that I want help now! I would be fine with it if they wanted to go over her progress now and then, but why have another evaluation if her services haven't even started yet. I am so tired of this. She tried to say that I was refusing services for Rylie by not letting her get evaluated again, and I told her that I am begging, praying and pleading for services, but I am just refusing the evaluation again because she has already been evaluated a million times. I have put phone calls in to the higher ups. I have had it! How many times do I have to discuss Rylie's behaviors. I think I am going to have to deal with this like I have been all this time and just wait for Rylie to mature. I feel like she has been stuck in the terrible two stage for years and it just wears on you after awhile, I just thought I could get a little help since Rylie is entitled to it, but apparently it is just to much aggravation. Funny thing is I googled-WHY DOES IT TAKE SO LONG FOR WRAP AROUND SERVICES TO BEGIN and MY BLOG came up! LOL! Am I the only one? Am I missing something?

I am still going to meet with them on Thursday to go over the treatment plan, but I just can't stand the thought of any more evaluations. I am not letting them evaluate her again until I get some help and progress is made, but they are just going to tell me she needs to be evaluated in order to continue the invisable , non exsistant services she is already getting. Am I making sense? I am so mad right now.

Still waiting

I'm still not getting any real behavioral help for Rylie. Remember this post. We finally got a TSS worker for Rylie. She went to one doctors appointment with us. Rylie was acting up and the TSS worker just kind of played with her and tried to reason with her about behaving nicely while we waited for our turn to see the doctor. I'm still not clear what the TSS worker's role is. She told me she could go anywhere I wanted her to go with our family ie, doctor appointments, the grocery store, birthday parties etc. and help with the behavioral strategies that are written in the treatment plan. I have yet to get any real help or advice or a treatment plan. How can the TSS worker work off a treatment plan if after 6 or 7 months we still don't have one? The behavior specialist has only been going out to Rylie's school every other week to observe her. She is well behaved in school now, because they have their own behavioral program in place for Rylie, and it is working well. I'm glad she is doing so great at school but, can I please get some help at home already?

And, here is a picture of my little monster angel for your viewing pleasure!

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.

On her best -worst behavior

Rylie is a great kid. She is so funny and always keeps us laughing. She is very independent. She has a great imagination-She is just cute as can be----However she does not fall in to that stereotypical always happy, so friendly- so sweet Ds catagory.Rylie has some behavior problems. She won't hold your hand, You can't tell her no just once, She cries when she doesn't get her way, she is always into something-She will never just sit still,.So anyway we are in the process of getting her a behavioral specialist.The behavior specialist came to the house this morning for an evaluation . I am proud to say Rylie demonstrated all these bad behaviors for her perfectly. Needless to say her services should be starting very soon.