Wednesday, April 30, 2008

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

Tuesday, April 29, 2008

Saturday, April 26, 2008

Sesame Place



The Philadelphia Children's Variety Charity is hosting their Sesame Place
Challenge tomorrow. I am so excited were going! They buy tickets and give them to families who have children with disabilities. The park will only be open to such families. To receive the tickets all I had to do was fill out an application and list that Rylie has Down syndrome. See, there are so many great things about having a child with Down syndrome. LOL! They sent us five free tickets for the whole family. I haven't been to Sesame Place since I was a kid. Karlie went to Sesame Place a couple times when she was younger because her Aunt Kim and Uncle John took her! I think Rylie is absolutely going to love it there. She was excited today when I was showing her the Sesame Place website. I'll have a follow-up post with pictures! They also have this event in the fall, so if you live in the Delaware Valley area, don't forget to sign up for tickets next time if you have a child with a disability. If anyone in the area is going tomorrow, let me know! This is a great event to meet other families!

Tuesday, April 22, 2008

Created For Good Purpose

When I was pregnant with Cesalie I found a baby/pregnancy website where pregnant women go on and talk about their pregnancies with other pregnant moms week by week. Then after you have the baby you can share your babies experiences month by month. You can create your own VIP page and it's really a lot of fun. They have a site search and every once in a while I will go on the site search and type in Down syndrome. A lot of the expectant mom's are having Nuchal scans, CVS's, Ultrasounds and Amnios. I just feel like if I found someone who's baby is going to be born w/ Down syndrome, I could send them a message and tell them about my Rylie and offer support to them. Actually I have done this! Anyway, today I decided to do a site search on Down syndrome and this is what I found:


had a nuchal scan..thats when they 1st thought my baby mght have a chromosome problem. and sure enough i got the cvs and the baby has down syndrome. its so0 depressing reading about how the baby looks right now. im terminating the pregnancy. i dont want to but im so0 young and i think its for the best. i think its the right decision for me. i feel horible and im extremely depressed. 2 miscarriages and now this..hope you all have healthy and happy pregnancies and never have to go thru nething like im goin thru. baby dust to all!

By the time I went to this persons VIP page(which was as soon as I read this) I realized she had already terminated the pregnancy. I am shocked and saddened? WHY? Because, apparently if you are going to have a child like Rylie, then that child does not deserve to live. Why didn't anyone in the medical field direct this poor girl to another parent of a child with Down syndrome. Why couldn't someone in the medical field convince this poor girl that people with Down syndrome can do things like walk, talk, run, learn, have fun, enjoy their families, make friends, fall in love, get married, swim, ride horses, play t- ball, play soccer, go to dance class, gymnastics and countless other things. Why didn't someone tell this poor girl that children with Down syndrome don't suffer from some horrible disease. Down syndrome is not a disease by the way.

Now, believe me ,I know that there are children with Down syndrome who have multiple health issues. I know there are children with Down syndrome who are not verbal and maybe will never walk. But does that mean their life is not worth living? Absolutely not! Their parents love them just the same and know they are blessed, despite health issues. Any child can be born healthy and then unfortunately can end up getting sick, or having a tragic accident that could leave them with brain damage. Would anyone then say, this child who was once perfect and healthy should no longer live. Of course nobody would ever say that! Why do some people think only healthy, perfect babies have the right to be born. I'm so sick of it. Some people in this world think a person like Rylie shouldn't be born. People need to be informed. Our blogs need to reach all types of people, not just those of us who have kids with Down syndrome. Doctors need to send the expectant parents to us , not the genetic counselors whose job it is to tell the expectant parent how much time they have left to get an abortion. By the way, I know there are good doctors and counslers out there, who do encourage the parents and give them the positives, but since 90% of Down syndrome fetuses are aborted, I don't think there are too many. Just my opinion.

Expectant parents need to be informed of the positives. And, yes they should also be aware of the health issues that may or may not arise. But they shouldn't be pressured or talked into an abortion just because the baby has an extra chromosome. I wish these doctors and genetic counselors would push for ADOPTION. There are hundreds if not thousands of people out there who would love to adopt a child with Down syndrome.

I don't think there is anything wrong with having Nuchal scans, ultrasounds or amnio's. I had the Nuchal scan when I was pregnant with Cesalie and ultrasounds with all three of my girls. I just don't think these test should be used as ELIMINATION tools.



Recently Alaskan Governor Sarah Palin gave birth to a baby with Down syndrome. You can read all about it by clicking here. I love what the family said in a press release:

Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed."

That is music to my ears. And that is the whole point of this post, that every baby is created for good purpose.


Saturday, April 19, 2008

Reflux

I was so happy we were able to scratch a doctor off our list this year. Rylie had been seeing a GI doctor since birth due to her anal stenosis. I previously wrote about it here. This problem was fixed at birth and hasn't been an issue since. The GI doctor just wanted to follow up with her each year. But I soon realized this appointment was kind of a waste of time. He would come into the office ask me a couple questions and leave, saying- see you in a year. After talking with her regular pediatrician, we decided it was not necessary to see the GI doctor anymore unless any problems ever came up.

I started noticing lately that at times Rylie makes a noise as if she is clearing her throat and then spits up. It can be during any time of day, sometimes even hours after she has eaten. I called her pediatrician and described everything to her. She said it sounds like reflux and prescribed her Zantac. She said wait and see if the medicine works and if not we will have to see the GI doctor. I thought it was strange that she is five years old and developing reflux. I honestly thought that was something babies got and then outgrew. Rylie didn't even have reflux issues as a baby.

After talking with some other moms from the Downsyn forum(in my opinion that is where the real experts are) it sounds like reflux is pretty common with our kiddos who have Ds, and after listening to some of their advice, I think I just want to take her back to the GI doctor and have her thoroughly checked out. I have started giving her the Zantac in the mean time. It's only been one day so I'm not sure if it's working yet. Actually, Rylie is great at taking medicine, but apparently this stuff is really yucky. She has been spitting it out. I started putting it in her juice , so I'm not even sure if she's getting it all.

Rylie is a healthy girl. I am grateful. I just remember this GI doctor saying I was gonna be seeing him for a long time and I thought we were going to prove him wrong.

Wednesday, April 16, 2008

Tuesday, April 15, 2008

Cesalie Moved Out!

Cesalie finally got the hint, packed up her things and went to her own bedroom. YAY!!!!

For four days in a row she has slept in her crib in her and Rylie's bedroom. They have both been falling asleep at the same time with no problems and no crying.

When Cesalie was sleeping in our room she would wake up in the morning crying and making her demands. I had to instantly jump up, pick her up, change her and get her bottle. Now when she wakes up she sees Rylie and Rylie sees her and they are having fun! Rylie is keeping Cesalie entertained for at least a half an hour before I have to go in and get them. It is so cute hearing them on the baby monitor. Rylie has been dressing up in a costume and funny hat and playing her wiggles guitar for Cesalie. All you hear on the monitor is Rylie singing and Cesalie laughing

So I hope I didn't jinx myself by posting this. I am just so happy she is finally in her own room and they are both doing great!

Karlie took this picture!

This past weekend we went to Peddler's Village. Karlie asked me if she could see the camera, because she saw something she wanted to take a picture of. Nice, huh? Maybe she will be a photographer someday.

Saturday, April 12, 2008

Social Butterfly



When you go shopping at the mall, do you smile and say hello to everyone you see?-I do!
When your in line at the grocery store do you say Hi, How are you? to the person in line next to you?-I do!
And when your eating at a restaurant do you turn around to the people sitting behind you and say Hello, and also to every single person who walks by you?-I do!

I do, because Rylie does. If she makes eye contact with you, she is going to tell you hello, and ask you how your doing. Could you imagine if we were all like this, smiling and saying hello to each other everywhere we went? I know I can spend a whole day out by myself getting errands done, and I don't even look at anyone, let alone smile and say hi, but when I'm out with Rylie, I have to say hello and make small talk with everyone, and this is not my personality. Rylie challenges me to be more social, She challenges me to smile more at people. It's a good thing.

Rylie used to run up to people she didn't know and give them hugs and kisses, but she has stopped. It really isn't appropriate, especially since she's getting older!

With all this being said, this doesn't mean that she is your stereotypical sweet, loving Down syndrome girl. She will also throw a tantrum at the mall. grocery store and restaurant. She constantly yells NO! and she is very grouchy at times.

I just love how sociable and friendly she is. I hope when she goes to kindergarten next year, other kids will accept her. I hope she makes friends. I can't see how anybody who meets Rylie wouldn't want to get to know her more. She is also very funny and full of energy.

Thursday, April 10, 2008

Rylie's Modeling Gig

Rylie had a modeling gig for ALL STAR LABOR CLASSIC back in December. Click here to check it out.

Monday, April 7, 2008

Random Stuff



Rylie isn't crazy about keeping her glasses on, but the good thing is that when she takes them off, she hands them to me gently. She isn't ripping them off her face and tossing them across the room as I expected. I feel bad though, because I know she can see so much better with them on(obviously, that's why she has them).

She will keep them on if she is looking at a book or enjoying something on T.V. This is really going to take a lot of patience and perseverance on my part, which by the way I have plenty of right now even though Cesalie keeps me up all night. She is just not a sleepy baby. She can sometimes go a whole day without a nap. I never heard of a 9 month old not needing a nap. She has a little bit of a cough, so if she coughs during the night,she wakes up and stays up. We are still playing musical beds with her too.

I know the best thing would be to put Rylie in a room with Karlie, so Cesalie stops waking her up, but Karlie has so much stuff in her room that Rylie could get into, and that would not be good. So when Cesalie wakes up in the middle of the night , we quickly take her back to our room, so she doesn't wake up Rylie. Good grief!

Saturday, April 5, 2008

Cesalie at 9 months old

There are so many things going on around here, but I'm feeling to lazy and tired to post about them, so I will just let you enjoy some pictures of Cesalie. Hope you can stand all this cuteness!

Wednesday, April 2, 2008

Trisomy 21 Symposium

We are so fortunate to live near CHOP where they will be holding the annual Trisomy 21 symposium on April 12th. We will be going as long as we find a babysitter-hint hint, anyone??

Anyway here's whats in store. If I am reading this right it looks like Karen Gaffney will be speaking. I would just love to meet her!

7:50 a.m. Welcome and Introduction

8 a.m. Education and Inclusion: Karen Gaffney
From the moment she was born, Karen Gaffney began an incredible journey
that continues today. She is the President of a non-profit organization dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. She is doing this by creating awareness and calling attention to the tremendous capabilities of people with disabilities.

9 a.m. Behave Yourself: Transforming Lives through Positive Behavior Support
Mark J. Bernstein, M.A.
This interactive presentation will focus on the concept of positive approaches and the technique of positive behavior support as models for supporting and encouraging individuals to live the best life possible.

10 a.m. Break

10:30 a.m. Speech and Language Therapy, Beyond Articulation: Barbara M. Jordan, MA, CCC-SLP
This presentation will describe the range of language services children with Down syndrome need, and ideas to support their language at home and school.

11:15 a.m. Healthy Behaviors for Weight Management: Rebecca Thomas, R.D., LDN
Review strategies to help families adopt a healthier lifestyle through diet and physical activity.

Noon Panel Discussion/Q & A

12:30 p.m. Lunch and Exhibits

1:30 p.m. Breakout Session I

A. Sexuality and Adolescence: Lisa Tuchman, M.D., MPH
Focus on puberty, approaching healthy sexuality, intimacy and romantic relationships in individuals with Trisomy 21.

B. New and Expecting Parents: Mary Pipan, M.D. & Dorothy Brightcliffe, R.N.
This workshop will discuss how that challenge can be rewarding, despite the obstacles that will arise. It will stress the importance of putting the child before the Down syndrome, and raising your child, your extended family and members of your community to do the same.

C. The Friends First Network: Karen Gaffney
The Friends First Network* has been designed to help bridge the gap between students with disabilities and those with out by providing a social structure for students to become friends and the opportunity to work collaboratively on a service project. Have the opportunity to talk with Karen about the importance of inclusion and learn how to get Friends First started in your area!

D. Research in Trisomy 21: David Lynch, M.D., Ph.D.
Review of clinical issues in patients with Trisomy 21 and the issues in potential clinical trials.

2:30 p.m. Break and Exhibits

3 p.m. Breakout Session II

A. Attention Span Issues and Trisomy 21: Hillary Kruger, M.D., Mariko Nakanishi, M.D.
Discuss current Neurobiologic understanding of ADHD. Review of common associated features such as anxiety and learning disabilities. Discuss both medical and non-medical treatment strategies.

B. Dual Diagnosis: Mary Pipan, M.D.
This workshop will address social skills and emotional regulation, development in children with Down syndrome, as well as the behavioral and educational implications of a formal autism diagnosis.

C. Taking Care of our Bodies: Resources for Individuals with Down Syndrome and Those Who Love Us, Bernadette C. Wheeler, M.D.
Key topics will include teaching about privacy, physical changes of puberty, social and emotional development of adolescence, caring for your body, contraception and preventing exploitation. The talk will also discuss healthy relationships and dating.

D. Advancing Feeding Skills in Children with Trisomy 21
Susan M. McCormack, M.A., CCC/S, Sharon M. Greis, M.A., CCC/S
This session will provide information on normal progression of feeding skills, factors that impact this progression in the Trisomy 21 population as well as offer recommendations and practical strategies to maximize feeding skill development.

4 p.m. Adjourn

Wordless Wednesday-Friends Forever-Rylie and Leah




For more Wordless Wednesday click here

Tuesday, April 1, 2008

Rylie-If you keep your glasses on then you can have some ice cream





Nope, she's not having it. She keeps them on for about 10 seconds before she takes them off. I wish she would at least take them off gently, but NO! I have a feeling Wordless Wednesday might just include a picture of broken glasses.

They really are a nice pair of glasses. I think she looks pretty darn cute!