Sotos Syndrome Support Association

SSSA NOTES

May 2012

In This Issue
Resources
From the President
2012 SSSA Conference
Help Wanted
Meet Owen Eigenberg

 

 

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.

 

 

 

Book/DVD Order Form

 

Resources

The Sibling Support Project 
is dedicated to the
 life-long concerns of 
brothers and sisters 
of people who have 
special health, developmental, 
or mental health concerns.
This organization aims 
to increase the peer support 
and information available 
for siblings, parents 
and healthcare providers 
of individuals with special needs through workshops, 
listservs and other resources. 

Visit the website 
for more information. 
 
 to find a Sibshop near you!

Yahoo links to pages 
with other links...



 

Make a tax deductible donation to the SSSA TODAY!!

 

  

To donate using PayPal, 

click on one of the

 dollar amounts below.

 

$10  $20  $50  $100 
 ______ 

To donate by check

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

_______

 

THANK YOU!!

 

 

 

 

 

Find Support. 

Give Support.

Learn Something. 

Teach Something.

 

GET INVOLVED!! 

 

Send your comments, book reviews, or articles to us for inclusion in the SSSA Notes:

 

newsletter@sotossyndrome.org

 

No access to email? 

 Send submissions to:

SSSA

Newsletter Submissions

PO Box 4626

Wheaton, IL

60189

 

**********************

 

 

  

 

 

 

From the President

Monica Boers

 

Another school year is almost over, amazing how fast time goes!! 

Once again I am very thankful for the administration, teachers and para-educators that are in Megan's life. Although we are fortunate, I recognize that other families experience challenges and concerns with their child's education plan and/or resources available to them. 

 

Megan was diagnosed at around 1-2 years old. Those first few years I tried to become as informed as possible about sotos syndrome, IEP's, therapies and all the do's and don'ts that go with it. The thing I recall hearing over and over was "Be an advocate for your child". It is a challenge for me to "speak up" when I don't agree with something but I am learning how to advocate without making enemies. Some of you may just be starting the "education journey" while others' may be facing the post high school challenges, although the advocacy required is different, the fundamentals of advocacy are the same. Stay calm, listen to the opinions of others, educate those in our children's lives about sotos syndrome 

(I loan the Sotos DVD and handbook to Megan's new teacher and support staff each year), be flexible and know the facts. Demonstrate you are an informed parent that understands the responsibility the school system is required to provide your child but be open minded about trying different options instead of demanding only what you think may work. It is a joint effort between us as parents, the educators and our children. There are many articles and DVD's available on child advocacy, absorb all you can and strive to maintain a good relationship with those that teach or work with your child while obtaining the most for your child. 

IT IS POSSIBLE!!

Enjoy your summer and hope to see you in Vancouver!

Monica  

  

  Megan and her IR teacher

last day of school and 

Elementary Graduation


SSSA Conference
Vancouver , Canada
July 20-22, 2012
English Bay Beach

 Click here to read more about the
conference and follow links to registration, the conference hotel and travel suggestions. 

Click here for information about a family dinner cruise on Saturday night. This event is a great way to spend quality time together while enjoying a true West Coast experience. 
 
Pride of Vancouver

Help Wanted
 
Do you want to get
 involved with the SSSA?
 

We are looking for a volunteer to transition into the position of Conference Liaison.  This person will help the conference committee to plan and organize the Annual Conference.  All support is done through emails and phone calls.  You do not need to be available to attend each conference because your support occurs throughout the year guiding the committee through the pre-written, step-by-step procedures to planning the event.

 

If you have excellent project management skills, communicate well and enjoy supporting a group of enthusiastic people planning an event, please contact us at

president@sotossyndrome.org.


 
Meet Owen Eigenberg
 

My name is Owen Eigenberg and I have been very busy with my life. 
 
I have gone to National Youth Leadership Training for Boy Scouts and acquired the position of  Assistant Senior Patrol Leader.
 
I got my braces off and was accepted to culinary school while still attending high school.

 

 

Congratulations Owen
on all of your great accomplishments !

 

 

 


 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.

 

 

Donate to the SSSA every time you search the Internet or shop online at select sites!!!

 

Search the web with Yahoo-powered GoodSearch.com and they'll donate a penny to the Sotos Syndrome Support Association when you designate the SSSA as your cause!