Sunday, May 24, 2009

Turner Syndrome Class Presentation and Fact Sheet

A fellow mom of a daughter with Turner Syndrome shared a class presentation that she gave her daughters school and I would like to share it here as well and she has given me permission to do so.


Below is the presentation we shared with the 3rd grade classes at Madisyn's school. If you think this is something that may help your child, feel free to copy and paste and edit as needed. This was a long thought out process. We knew when the time was right to share....Madisyn's teacher was very supportive feeling it would be beneficial, and it was. It may not be for everyone, but it was a great experience for Madisyn and her classmates.

Blessings, Jen Campbell

Raise your hand if you or someone
you know has allergies?
Raise your hands if you or someone
you know has asthma?

Raise your hand if you or someone you know wears glasses or
has braces on their teeth?

We all know someone who has something right?

Raise your hand if you know someone
who has Turner Syndrome?

My name is Madisyn, and if you know me you do know someone
who has Turner Syndrome.

Madisyn was diagnosed with TS when she was 2 days old.
Not only am I Madisyn and Blakes mom, but I am the President of the Chicago area TS Society. Several families and I are publishing a book. Boys can not have TS, so this is why we decided the name of the book would be called "The Turner Girl Club.

I have many friends who also have TS just like me. We just had a spa event where we got to have our nails and make up done with our moms.
I brought some pictures of me and my friends and our moms to show you.

When Madisyn was born her cry was not very loud and her feet were swollen. This led doctors to check her blood pressure and do tests on Madisyn's heart. Doctors noticed Madisyn has 2 valves in
her heart valve instead of 3 like you and I have.
She also had a narrowing of her aorta (our Aorta is the
main vessel of our heart). (Bring a visual picture of heart)

These heart findings led doctors to do a special blood test which told us Madisyn had TS.
Madisyn is our miracle.
TS occurs in 1 out of 2000 baby girl births. (show bowl of 20000 pastel M&M's. "if all these m&m's were girls, only one would have TS )
(4 bags = 2000)

Some of you may notice Madisyn does not hang from the monkey bars outside, or that she may not keep up during running activities in comparison to classmates or that she has a water bottle with at her desk. Her doctor wants Madisyn to stay hydrated which means to keep enough fluids in her body to prevent fainting episodes. He also does not want her to do activities that cause extreme exhaustion or lift really heavy things. It might put too much strain on her heart. Instead of doing really strenuous activities, Madisyn does get to ride horses once a week at a place in Maple Park.

Madisyn sees her cardiologist(can you guys say cardiologist?) This is Madisyn's doctor who monitors her heart, once a year. He says she is doing great. She can run and play just like other kids, but knows when she needs to rest. Madisyn takes a pill every day to help slow her heart rate down, and keep her blood pressure in check.

(Miss Terry) (Ms. Lewis or Ms. Ricker)
How many of you know different kinds of language within the English language? Ie. Sign language, brail.
Does anyone know what non-verbal/body languag is? Mrs. Campbell and I are going to show you examples of non-verbal/body language.

(Miss Terry) (Ms. Lewis or Ms. Ricker)
Many people who have TS are very good at reading and comprehending books, and excel at vocabulary words. In fact, Madisyn's mom told me Madisyn can be listening to a book in her CD player and physically read a different book at the same time, and know everything that is going on in both. Pretty amazing huh?

Sometimes girls who have Turner Syndrome have difficulty understanding body language and peoples facial expressions. Things like crossing your arms, rolling your eyes or making a face at Madisyn can be very hard for her to interpret. It is best to use nice words and talk to Madisyn since vocabulary and verbal language is one of her strengths.

(Miss Terry, Ms. Lewis or Ms. Ricker)
Some girls and women who have TS have difficulty with balance
and judging how close or far they are to someone or something.
If Madisyn is standing too close to you and you would like her
to back up, how would you let her know what you want? Would you back away from her crossing your arms, or rolling your eyes? Or would you let her know what you want by asking her with nice words if she can back up a bit?

Sometimes girls who have TS feel awkward in social settings… when its appropriate to join in a conversation, to be careful not to interrupt in a conversation. It is admirable if you are able to notice when someone may be feeling awkward and to try to talk them through a situation and include that person.

When Madisyn was born she was 18 inches long. This is a bit smaller than
most babies. Madisyn has consistently been smaller than other kids her age.
Girls who have TS have trouble growing on their own. Every three months, Madisyn see's a doctor called an endocrinologist. Can you guys say Endocrinologist? This is a doctor who tells her how much medicine she needs to help her grow.

When we were very first informed of Madisyn's diagnosis after the doctor fully explained what TS was all about, he ended his conversation telling us the key to Madisyn's life will be unconditional love and acceptance. Isn't that what we all want? Whether we wear glasses or braces, whether we are tall, short, heavier or skinny and no matter what the color of our skin, we all just want to be accepted.

Every night before bed my mom or dad give me a shot. This medicine goes in my leg or hip. Some times it stings, but I count through it, stay brave and don't cry. I know it is helping me grow.

My mom and dad have taught me we are all different. It's what
makes life interesting. If everyone were the same, it would be boring.

My parents teach my brother and I that it is what is on the inside that really counts.

((((at the end of our presentation, we asked questions to see how much the students took was amazing how much they understood. We handed out a small piece of candy to each student and a feathered butterfly - TS logo. We also gave each student a paper summerizing our presentation to take home and share with their families - all 3 classes were very accepting and Madisyn's teacher said she has noticed a difference in how students communicate with Madisyn. The school would like us to share this with all of the 4th grade classes at all 4 schools next year if Madisyn is okay with that.....this might be a good thing since they will all be together in junior high which are the toughest years in my opinion))))

And the fact sheet that they passed out which of course doesn't list everything or in detail as it is for children who dont need to know certain facts that may cause teasing (such fertility, menstruation etc.)

Turner Syndrome - Some Facts

Turner Syndrome = girls only. 1 out of 2000 girls has Turner Syndrome.
(this means that one m&m out of 5 huge bags of m&m which would have to be all girls would have TS)

Madisyn has many friends who have Turner Syndrome just like her.

Some characteristics of Turner Syndrome include

Specific heart problems - Madisyn has a bicuspid aortic valve instead of a tricuspid valve. (2 valves instead of 3) Madisyn sees her heart doctor (Cardiologist) to monitor her heart. Girls who have TS have an increased risk for high blood pressure. Madisyn takes a pill each day to keep her blood pressure and heart rate in check. No monkey bars or heavy lifting. Madisyn knows when she needs to rest.

Slow growth and/or short stature - The most common feature of TS is short stature. Madisyn just started taking medicine to help her grow. Her mom or dad give her a shot every night. She is brave and knows it will help her grow taller like her classmates. Madisyn sees a doctor called an Endocrinologist who helps monitor her growth.

Excellent verbal skills and reading abilities….Girls who have TS usually excel in their verbal skills. Madisyn can read one book and listen to a completely different book on CD and know what is happening in both.

Non-Verbal Language Difficulties - Non-verbal language poses a challenge to many girls who have TS. Madisyn has difficulty understanding people's body language and/or facial expressions. This can cause problems in social settings. Sometimes it is difficult for girls who have Turner Syndrome to join in on a conversation or they may interrupt a conversation without meaning to. It is best to use nice words to communicate with Madisyn since verbal language is one of her greatest strengths, and help them feel included.

Spatial-Temporal Processing Difficulties - imagining objects in relation to each other is often difficult for girls who have Turner Syndrome. This can cause problems with balance, solving some math problems as well as understanding a persons personal space. Sometimes Madisyn may stand very close to you without realizing she is in your space. It is best to ask her with nice words to please step back a bit.

The Butterfly is the United States Turner Syndrome Society logo.

Madisyn's mom Jennifer was the parent chair of the TSSMC. (Turner Syndrome Society of Metropolitan Chicago) She is proud of Madisyn. She and other families are in the process of publishing a book called "The Turner Girl Club".

Madisyn, her parents and members of the Turner Syndrome Society of Chicago thank you for helping us bring awareness to Turner Syndrome by sharing this paper with your family.

Parent Reviewers