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Order DVD or Handbook Now!
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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.
A Handbook for Families
(Third Edition)
$15 plus shipping
English Spanish

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
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Resources
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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...
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Make a tax deductible donation to the SSSA TODAY!!
To donate using PayPal,
click on one of the
dollar amounts below.
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To donate by check
Mail to:
SSSA
P.O. Box 4626
Wheaton, IL 60189
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THANK YOU!!
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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
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From the President
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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
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SSSA Conference
Vancouver , Canada
July 20-22, 2012
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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. |
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Help Wanted
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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.
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Meet Owen Eigenberg
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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 !
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