Sotos Syndrome Support Association


SSSA NOTES

March 2014

 

 
In This Issue
Kelsey's Bright Future
Success and Failure
FAQ's
Arkansas To Do's
Articles on Inclusion
2014 Arkansas conference
Included Sport

 

 

 

  

Kelsey Gilbertson

Bright Future

 

       

 

 

During the last year of Kelsey's senior year in highschool she was assigned to a counselor within the Division of Vocational Rehabilitation in Washington State.  The counselor referred Kelsey to a job coach who supported Kelsey during her job search and continues to this day to check in with Kelsey and her current employer from time to time.  Kelsey's job coach helped to fine tune her resume, and practised with her on interview role playing.  She even helped Kelsey to pick out her interviewing outfit.  Having someone with Kelsey that first day of walking the streets and handing out resumes was a lot less scary not only for her but for her "mom" as well.  How exciting it was too get that call from Barb and hear that Kelsey had gotten a job at the last restaurant she interviewed at.  And not only did she get the job, but they wanted her to start that night.  Kelsey has since left that employer but with the help of her job coach landed another job shortly there after.  She is currently working evenings and weekends in the kitchen at an assisted living facility and goes to college during the day.  Her short term goal is to graduate with an AAS degree in Culinary Arts.  One day she hopes to work as a chef either here in the U.S. or abroad.
 
from Orion's website:
 
"The impact of Orion's services on the lives of program participants can be significant, but that doesn't mean it has to be complex. 
Take Kelsey, a referral from the Division of Vocational Rehabilitation. Kelsey was a recent 
graduate of the Tahoma Transitional Program, preparing to start culinary school, but she and her mom knew she needed a job as a pathway between the two."

 

read on....

    

 

 


I won't give up
by Kodey Toney

   

 

Often times we look at parenthood as something we do to protect our children. I suppose that is what it's about for the most part, but there is something about letting our children try something that helps them in the long run. We have to let them attempt things. If they don't try we will never know if they can do it or not. 

Simple right? 

There is a quote that says: "It is a mistake to suppose that people succeed through success; they often succeed through failures." This makes so much sense to me. We've all failed at something and have learned more from that than from our successes. 

In my last weekend of Partners in Policymaking we had a panel of speakers talk about several things, but one that really hit me is a lady who spoke of getting too much help. She, an advocate with a disability, said that she served on a board and some of the people involved were trying to do most of the work for these individuals with disabilities. When it got to be too much she finally had to tell the advisors to stop. "You're helping us too much," she said. "Give us a chance to do it." Her point was that the others were just there to advise and make sure that they didn't fail. They weren't there to do the work for them. 

How many times have we looked at our children and thought, "We're going to do it this way, because he can't do it the way everyone else does." We don't even give them a chance to fail. 

read on......

  

 

 

 

SSSA CONFERENCE
FAQ's

   

Here is a sample of Frequently asked questions about the Sotos Syndrome Support Association's annual conference:    

 
How many people come to the conference?

Average attendance is about 60 families for a total of 175 people. The majority come from the USA and Canada and there are usually some families from overseas too. You'll meet about 50 people with Sotos of all ages from infants and toddlers to teens and adults.

Do I have to bring my child with Sotos?

Most families bring their child with Sotos, especially if it is their first conference. This is the easiest way to meet with one of the medical experts and discuss any questions. Some people don't bring their child with Sotos if traveling is difficult or expensive or if they have attended numerous conferences and simply wish to stay in touch with fellow Sotos families. Another consideration is that older children with Sotos often appreciate the opportunity to meet other individuals with Sotos who are "just like me". With or without your child- either way is fine - you'll enjoy the conference.

Is there an extra charge for a doctor's appointment?

No, it's included in the conference fee.

What is there for my young adult with Sotos to do at the conference?

He/She may either register as an adult and attend the workshops, or register as a child/assisted adult and take part in the fun activities on Saturday and Sunday with the older teens.



I still have more questions. How can I get more information?

You can email conference@sotossyndrome.org, check out our website sotossyndrome.org/conference-FAQ

or phone 1-888-246-7772.

 


 

  
5 free things to see and do around Little Rock

by the Associated Press


   

 

Arkansas is nicknamed the Natural State, and its capital lives up to the moniker. There are plenty of ways for people to experience the great outdoors in and around Little Rock. Plus, many of them are free.

 

read on......

    

 

 


Tell Us 
your story

   

  

Find Support
Give Support
Learn Something
Teach Something

GET INVOLVED!

Send us your story about your experience for inclusion in the SSSA Notes.
 
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SSSA

Newsletter Submissions

PO Box 4626

Wheaton, IL

60189


Don't forget to include photos!

 

 


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The way we support and inform our members is through our web page, toll-free phone line, SSSA Notes, our informational DVD and Handbook for Families and our Annual Conference. 
 
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Thank You to all members 
who have recently paid!
 



William Hefner and his cousins, 
Frances and Bridget Novak
Crested Butte, CO

See you next month:
Conference news and 
agenda sneak peeks!
visit us on Facebook      click here          

 

 

Inclusion 

making it a reality

  

 

 

 

 

 

2014 CONFERENCE
registration is open

   

    

Check out the updated information 
on the web site

 

The Conference Registration link  is OPEN
Early Bird Registration Fee - until April 30 

 

Learn, network, bond!

 

 

 

 

 

FAMILY SKI TRIP &

Adaptive Sports Center

Crested Butte, Colorado
by Ellyn Hefner

   

   William at the ASC

 

Eight years ago we took a family vacation to Crested Butte. My parents and siblings and their families all stayed in a cabin at Crested Butte, Colorado. While on the mountain I saw the sign for Adaptive Sports Center. I inquired about who they serve and the next year William was enrolled in their program.

With the help of many instructors likeTim, Stephanie and Mike C., William is now skiing, almost solo! This is excellent for a family who skis. As a family we can all participate in a sport, together. 

ASC and William have a goal. William will work hard with his instructors to be able to ski on his own in 3 years. William always compares his activities with his siblings. His goal: "To be instructor free like they are and ride the Silver Queen lift to the top of Crested Butte and ski down." 

His goals helped becoming realized by ASC.

Thank you ASC! See you in 2015!

 

Mike C., William's instructor

2014

william and stephanieWilliam and instructor Stephanie 

2013

William and Stephanie

2014

   "The Adaptive Sports Center enhances the quality of life of people with disabilities through exceptional outdoor adventure activities. The successful programs the ASC provides are inclusive to families and friends, empower our participants in their daily lives and have a positive enduring effect on self efficacy, health, independence and overall well-being."  

The ASC winter season runs from November until April and offers professional instructions for individuals with disabilities and their friends/families. Offered are private lessons or group lessons in skiing, snowboarding, nordic skiing, and more! click here for more information about winter and summer activities.

 

 

Photo of DVD and Handbooks
Order DVD or Handbook Now!

 DVD:

A Journey from Diagnosis 

Through Life

 created by the SSSA

 

$5 + shipping

 

This 30 minute video contains interviews of doctors, families and individuals with Sotos Syndrome, explaining the basic characteristics, experiences and expectations of their journey. 

 

Buy Now           

 

                             

 

A Handbook for Families

(Third Edition) 

$15 plus shipping

 

           English      Spanish       

        Buy Now       Buy Now

This 64-page soft-bound booklet includes:
A Description of the Syndrome
  • The Newborn Period
  • Infants and Toddlers
  • Young Children
  • Adulthood
  • Differential Diagnoses
  • Genes and Hereditary
  • The Role of the Schools
  • Community Resources
  • Siblings and Families
  • The Wider Community
  • Coming to Terms

 Medical and Developmental Evaluations

  • Genetics
  • Central Nervous System
  • Internal Organs
  • Muscle
  • Skeletal System
  • Endocrine
  • Hearing
  • Speech and Language
  • Eyes and Vision
  • Development and Intelligence
  • Behavioral and Psychiatric

  

 

  To order the DVD or Handbook 

by check, please visit our site.

 

 

 

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Wheaton, IL  60189

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THANK YOU!!

 
 

  

 

 

THANK YOU

to all those who have 

sent in stories, 

article ideas 

and especially..... 

PHOTOS.

Keep Sending them in! 

 

 

 

 

 

Advocating
learning through apps

   

 

FYI

If you own an iTunes account and can download the podcasts app, you have access to thousands of workshops/lectures on disability issues - 

from self-advocates and other experts  

as well as leading universities.  

Browse options using search terms like:

 

Disability

Inclusion

Special Education

 

 

Keep learning!

  

 Disclaimer:  The SSSA does not endorse any of the medication, diagnostic procedures, treatments or products reported in this email newsletter.  The information is intended only to keep you informed.  We strongly advise that you check any medication, procedure or treatment with your physician.

 
 

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