Friday, February 29, 2008

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.

Monday, February 25, 2008

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.

Friday, February 22, 2008

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.

Tuesday, February 19, 2008

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.

Monday, February 18, 2008

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!

Friday, February 15, 2008

An Award


YAY! I received an award from Deb over at Three Weddings. Thank you Deb! I think you are a Kind Blogger too!
I would like to pass on this award to RK over at Just RK. When I had just started my blog back in October, she introduced me on her blog which brought me readers. I was so excited and I thought it was so kind of her. So, RK you deserve this award. You are definitely a Kind Blogger.

Thursday, February 14, 2008

Tuesday, February 12, 2008

Bloggy Valentine


In honor of Valentine's Day RK over at Just RK has started a Bloggy Valentine. She wrote a great post about what the Down syndrome blogger community means to her and has asked all of us parents of kid's with Ds to do the same. Here are the questions we are to answer..............
~What has the DS blog community meant to you?

~What lessons have you learned?
~How did they encourage you?
~What are some of your favorite stories?

Five years ago when Rylie was born I didn't have a computer. The following year we did get one, so right away I started researching Down syndrome. As far as I know there where no Down syndrome blogs. There were probably different Ds forums, but unfortunately I never came across them. Mostly when I googled Down syndrome I found websites that listed all the health problems associated with Down syndrome. I also found information about vitamins for children with Down syndrome. So I convinced myself Rylie had or will one day have all the health issues I was reading about and that I needed to get my hands on these vitamins right away. I started to get alittle obsessed about Down syndrome. I was spending too much time reading negative things, so I took a break and never googled Down syndrome again until three years later. This time I found blogs written by parents of kiddos with Down syndrome. And their blogs linked to more blogs written by parents of kiddos with Ds. I couldn't believe all the great stories I was reading and all the cute kids I was getting to see pictures of. All of the sudden I realized their were so many families out there like my own. I realized I too need to start a blog and share Rylie's stories.

The biggest lesson I have learned is that I'm not alone like I thought I was!

I get so encouraged when I read blogs with the older kids. It helps reading about the way their kids are included with their peers and in the classroom. I love to hear stories about when a parent had to advocate for their childs education and was very sucessful. It gives me such hope. I also marvel at the new parents, who even though they are so new to Down syndrome, they do such a great job at spreading awareness. They let the world know how great babies with Down syndrome are and even though it was not their life long dream to raise a child with Down syndrome, they know they could never imagine their lives without their child. And they realize they are blessed even though there are bad days and health concerns.

I have also joined the Downsyn forum. I love it. If you have a question, you can just post it on Downsyn and many other parents will be happy to answer you or just offer a prayer if your having a hard time with something. I am so thrilled I found this forum.

Happy Valentine's Day to my On-line Down syndrome Blogger Community! You all encourage me and make me laugh everyday!

Monday, February 11, 2008

ENT Follow Up

Don't you just hate it when you leave a doctors office more confused and uncertain then when you got there?

Rylie had her follow-up with the ENT today. We only had to wait two hours to see the doctor, and then only a half an hour to get the hearing test. When we walked into the office it looked like Parents Visiting Day At Daycare. I can't even tell you how many people must have had a 4:00 appointment like myself. The thermostat in the office read 79 degrees. I can't even begin to tell you how HOT it was. I thought I was going to melt. Two and a half hours in a doctors office chasing after Rylie is enough to make me sweat, but go ahead and have the thermostat set at 79 degrees in room with a zillion people, and Oh boy, I was not happy. It is only 10 degrees outside, but when I left the doctors office , I felt no need for my coat. I can't even tell you how wonderful that 10 degrees felt.

Okay, back to the appointment. Well the ENT said everything looks good with her tubes.
She passed her
behavioral audiometry
test. This is where the child goes into the booth and turns towards sounds. She did great! However, they also did an
OEA
< test, and that she failed. This is the test where they put the microphones in the ears, like the test they do on newborns. The ENT said he didn't know why she failed. He said since she passed the first test, that would mean she is hearing fine. He said he is not concerned at all, and for her to come back in 6 months. I think she is hearing great. I'm just confused about this OEA test. She used to always pass the OEA test , but fail the booth test. Now it's the opposite.

I hate when the doctor says, I'm not concerned, we can check it later. Of course your not concerned, It's not your child! I'm kidding, but it is frustrating. I'm not crazy about this doctor, because he talks to fast and always makes me feel stupid when I ask questions. Anyway, I know she is hearing good, I'm just confused.

By the way, blogger is driving me crazy, the spell check doesn't work, I can't link anything, and now my text turned blue. WTH ! I'm too tired to fix this.

Oh wait, click on any of the blue and you can learn all about hearing test. GRRR!

Thursday, February 7, 2008

Rylie and Alice




Rylie had a play date yesterday with her friend Alice. Rylie and Alice are in the same pre school class at UCP. Alice is an adorable 4 year old little girl who also happens to have Down syndrome. Alice came to our house yesterday with her mom, Kim.
This was the first time I met Alice and Kim, and I was thrilled to have them come over. And I really enjoyed talking with Kim. We just had so much to talk about. We probably could have talked for hours and hours but, Rylie and Alice were getting a little bit tired from all the fun they were having. It was so awesome to talk with another mom who "GETS IT", someone who can relate to having a little one with an extra chromosome. I'm looking forward to getting together again soon!

Wednesday, February 6, 2008

Speaking of Independence


Speaking of independence...................

Rylie got her own ketchup to go with her french fries tonight. Please don't ask me how I missed this one. All I know is that I gave her permission to eat her french fries at the table in her bedroom. This is what happens if I am not watching her every single second! At least she got it only on the plate. And yes, this is the entire bottle.

Tuesday, February 5, 2008

Independence

I've had this nagging feeling lately. I 've been thinking about Rylie's future as an adult? Will she marry? Will she be independent enough to live on her own? What kind of job will she have? Is college in her future? I haven't stopped to pray about it, but I think God has answered my question. In the last two days Rylie has shown me how independent she is at only five years old. When I brought the groceries home, she just took it upon her self to start putting them away(in the right places too!). She always dresses herself but she has actually been picking out her own outfits and they even match. I walked past the bathroom last night and to my suprise I saw Rylie in there brushing her teeth. I forgot to get her a drink during dinner tonight and she went in the fridge, got a juice box, took the plastic off the straw and put the straw in the box. She ran to the fridge and got Cesalie her bottle this morning when she started to cry. Also this morning we were waiting for her bus and I started to vaccuum, well Rylie just grabbed her coat, put it on, and put her back pack on too. This girl is amazing me!!!! If she can do all this at five, I can only imagine how independent she will be as an adult. That nagging feeling has left...for now.

Monday, February 4, 2008

Rainy days and Mondays....


This morning we were sitting in the car waiting for Karlie's school bus(yes, I drive to the bus stop),and it was raining. I turned around and looked at Karlie. She had such a sad look on her face. I said, "Whats wrong Karlie, do you have the monday blues"? She said with the most serious look on her face,"Rainy days and Mondays always get me down". I started laughing and said, "Karlie, I think thats a song". And she said, "Yeah, I know". LOL!

Saturday, February 2, 2008

Let them be little....



Cesalie is a little bit over 7 months now. She is scooting on her belly across the floor and getting up on her knees and rocking back and forth. She is holding her own bottle(which is a huge time saver for me during the morning rush). She is making a lot of new sounds, mostly da-da, ma-ma and la-la. Today was the first time she got up on her hands and knees and started rocking. I said to Vince, ya know, I don't really even know what she is suppose to be doing developmentally at this age. When Karlie was born, I read all the books and charts and made sure she was on schedule. When Rylie was born, I did too. Rylie was right on target with her milestones up until around 6 months. Then she started taking much longer to develop certain skills. I had to stop stressing and just let Rylie be Rylie and develop at her own pace, but still help her in anyway I could. And I guess this attitude just carried in to Cesalie. Honestly, I really don't know exactly what Cesalie should be doing, but I know she is doing fine, except aren't 7 month old babies suppose to take naps and shouldn't they be in their own rooms by now? That is a whole other story. lol!

I know I have a long road ahead of me with Rylie. We are wrapping up the potty training, she is probably going to kindergarten in the fall. I know things are going to be hard. But for now she is only 5, Cesalie is just a baby, Karlie is only 9 and the most important thing right now is that they have fun and know they are loved.

I started this post as a Cesalie Update , it's funny where my thoughts take me when I start "blogging". So, that is why I only posted a picture of Cesalie. Gosh, she is too cute!