Daddy/Daughter Dance

Here are some pictures of Karlie and Dad(and of course Rylie had to get in one) all ready for the Valentine Sweetheart Dance. It is a Daddy/Daughter dance that they have at Karlie's school each year. We figured between Karlie, Rylie and Cesalie, Vince will be going to these dances for the next twelve years. And 15 in all, since they have already been to three. Poor guy, just kidding-he has fun. Karlie is such a daddy's girl. She looks forward to this dance every year.

They get a picture taken by a photographer at the dance. I'll post it when we get it.

Wordless Wednesday-Rylie looking pretty and mad for school picture day

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.

ALL children are a gift from God-Down syndrome Belongs!

I know most of the people in the Down syndrome community have seen this already, but lets hope the doctors, genetic counslers and expectant parents do.

I am 100% Pro-life! If I had known Rylie had Down syndrome before she was born, I would NEVER of had an abortion. I wouldn't even have thought about it for a second.
Even if you are pro choice, why should Down syndrome be something you get to choose or not. Babies with Down syndrome have every right to be born. You shouldn't be able to choose to terminate a pregnancy just because the unborn baby isn't what you were expecting. Once you have the baby you will realize just how perfect he or she is. You will see that your baby is a gift from God, not a mistake! If you don't think you could handle a baby with Down syndrome, or any type of special needs, always remember there is adoption. Also, talk to parents of children with Down syndrome and they will all tell you they couldn't imagine life without their little angels. They will tell you how blessed they are!!! Down syndrome belongs!

It's About Time We Got Some Snow

Today was the first time we got any snow this winter, unless you count a few flurries here and there or the 1/2 inch we got a few weeks ago, which was immediatley washed away by warm rain. Although I'm not a big fan of snow, I felt bad for the kids,that they haven't had a snow day yet. They were out playing in the yard early this morning. Rylie cried really hard when it was time to go in. She was frozen and needed a break. We will take her back out later. Karlie is at the park sledding with her friend and her friend's family. So she is really enjoying her first snow day off from school.

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!