SSSA Notes
April 2015

      

 

Hello my friends,

 

This past month we had our annual Winter Board Meeting. My first as President. For me it was an interesting experience. I'm getting a lot of on the job training. For those of you who don't know me in the real world let me explain. I am a professional dog trainer. I've never worked in the business world. Running a board meeting is foreign to me. I wear t-shirts, jeans and tank tops pretty much anywhere I go.  Dog Trainers are  known for being direct and saying exactly what they think in a blunt manner. Needless to say it's a bit out of my comfort zone to be running a board meeting. I'm so grateful to all of the SSSA Board Members for their patience and understanding while I am learning. Not to mention my gratitude to all of you for giving me the opportunity to step outside my comfort zone. Something that I make Daniel do on a regular basis. Now, I can truly say  Mommy is practicing what she preaches. I would particularly like to thank Monica Jacobs and Joanne Weick for all the help that have given me and will continue to give me during this transition period. These ladies are former Presidents and have continued to serve the SSSA membership with honesty and integrity. It is very appreciated. 

 

As you can imagine we spent a lot of time talking about the Orlando Conference during this meeting. Our conference planner, Sue Jennings, and our Conference Coordinator, Karen Osborn have been hard at work and have a lot of fun things planned for all of us. I can't wait. If you are on FB then please join our FB group. Sue updates it regularly with information about the conference. 

 

Registration is now live on the website. Members should register early this year. Orlando is going to be a big conference. Take advantage of the early bird special. Price goes up after May1. I know I will be. 

 

We are also in need of a few more people to volunteer Friday during our registration period. Please contact Karen at conference@sotossyndrome.org  for more information. It's a great way to get to know some of the officers and board members of the organization. I promise we are a fun group to around. Who knows some of you might be able to join me in getting out of your comfort zone. 

 

Kellie

SSSA President

President@sotossyndrome.org

 


Owen Eigenburg
"I got accepted to UMSL "
University of Missouri St. Louis


 An advocates advice 
 about the SSSA  conference
 by Owen Eigenburg

The past sotos conferences were extremely fun and excellent opportunity to meet new friends and make new memories. This year I want the sotos family to have the best time of our lives In Disney world. 

 
 2015 SSSA Annual Conference 7/10-7/12
 Registration Open 

The Coronado Springs Resort has discounted their typical room rate just for our group and has agreed to extend it for 3 days before the conference and 3 days after.  For help planning your travel and Disney experience, please contact travel agent, Robin Fitch

cut-off is June 10 and rooms 
are going very quickly! 

If you haven't booked your rooms yet at CSR, please do so ASAP! Our room block is completely filled and Disney has deactivated the online booking link. You can call the number below or call our TA and still book at the discounted rate as long as there is still availability at the resort. 
"Don't delay, call today! :-)" 

The phone number for guests' to call to book their reservations is 407-939-4686. They are open seven days a week; 8:30 AM - 6:00 PM EST Monday -Friday and 8:30 AM - 5:00 PM EST Saturday & Sunday.
________________________________________

Also,  it is HUGELY IMPORTANT to the conference organizers that you fill out the childcare form after you complete your registration.


In This Issue
SSSA 
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THANK YOU
Book 
Corner


"This book is about a life worth living. I was born with a rare, genetic disorder called Sotos Syndrome, which caused me to grow faster...The purpose of this book is to spread the word not only about my life but also to raise awareness of Sotos syndrome and to encourage all persons who have it or live with someone who does."


Matt Shea
 
Kelsey Weick at the Gordyville horseshow held at Gordyville in central Illinois.


 
 Question Yourself?
 Kathie Snow/Disability is Natural

 

How does a person's label or diagnosis affect our attitudes about and our actions toward the person? Do we put "blinders" on and see only the perceived limitations that accompany the diagnosis, ignoring positive and/or hopeful attributes or possibilities? Are our reactions automatic, like "Pavlov's dogs"? 


 


 
 "You are not alone"
 by Sonya S.

My daughter is almost 14. I can assure you that many things are better since she was two. We can go to the mall, grocery store, visit places, etc and she has learned a lot of coping skills to deal with the over stimulation, etc. Up until about grade 3 we had problems at school, but she is very well behaved at school now. Some problems are just different...like when she is defiant it is not like I can pick her up and put her in her room (she is taller than me now). She can express herself much better (although I think that will always be an issue) and she is completely independent (dressing, hygiene, etc). She even cooks (with some supervision), packs her own lunches and does her own laundry. The hardest part for her/us is the obsessions and perseverance. And the friendship thing...that sucks too. But all our kids have different strengths. Good luck with your little one. I remember those days. Jordan was 21 months when I had my younger daughter). It was tough. Remember to ask for help - don't wait for anyone to offer. Most people assume since you are not asking for help that things are fine. Take care of yourself and remember to do something for yourself (hobby)...I know everyone says that, but we don't realize how important it is until we suddenly wake up one day and think "Who am I?" Eat well, try to sleep and remember you are not alone. 

 

Disneyworld 
links

DVD:
A Journey from Diagnosis through Life
created by the SSSA
$5 + shipping
Large DVD Handbooks PHoto

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