SSSA NOTES

September 2013

Back to School Edition

In This Issue

Hannah's First Day of School

Order DVD/Handbook

Tell Us Your Story

Madison's First Day of School

Helpful Websites

Autism/Sotos syndrome

One Pager

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Here is a picture of our princess Hannah on her very first day of kindergarten!!! We are so proud of her! She is in a mainstreamed kindergarten classroom and is pulled out in the afternoon for resource! She LOVES her teacher and classroom!!!
~Linnea Dugan

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.

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

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!!

NEED BABY PICS

Start finding and

then sending

your cute baby pictures

preparing for an upcoming

BABY ISSUE

newsletter@sotossyndrome.org

Tell Us Your Story

Find Support.

Give Support.

Learn Something.

Teach Something.

GET INVOLVED!!

Send your comments, book reviews or a story about your experience to us for inclusion in the SSSA Notes:

newsletter@sotossyndrome.org

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Send submissions to:

SSSA

Newsletter Submissions

PO Box 4626

Wheaton, IL

60189

Would love recent pics and a blurb of what your child is doing for the newsletter.

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William is happy

to see his new classroom!

click here

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This is Madison's back to school pic

for the new school year.

She is in the 2nd grade and goes

into a SDC class for the day.
~Shelly Bommelyn

Helpful

Back to School

Websites

"Whether your child returned last week or

last month, you should have your

back to school plan in place.

Are you off to a good start this year?"

Wright's Law*

Two more good pieces

from Wrightslaw:

10 Tips for Special Education Advocates

From Victim to Mighty Force:

How One Mom Turned it Around

"The start of the school year

is a busy time for students,

parents and teachers alike.

This guide will help you better

advocate for the needs

of your child with LD

so she isn't lost in the shuffle."

National Center for Learning Disabilities

The Backpack Connection Series

Technical Assistance Center on

Social Emotional Intervention

Steven Aquino, who works with special needs children and is himself visually impaired, describes in The Magazine how accessibility technologies like VoiceOver and Guided Access built into iOS "let those with disabilities use their devices with as much wonder and enjoyment as the fully abled." Calling iOS "nothing short of a godsend," Aquino notes that with iPad, a cognitively delayed student is able to "tap and swipe like a pro" and even master multitasking gestures without any demoing or prompting. He concludes: "Every time I pick up my iPhone or iPad, I feel extremely fortunate that I'm living in this time."

Re-Enabled

All About the IEP

National Dissemination Center for

Children with Disabilities

Sotos

syndrome

& Autism

"Because some individuals with

Sotos Syndrome also have Autism,

the following web site called

Opening Autism has a very good

description of Sotos Syndrome.

It discusses features, statistics,

reproduction and intervention

in a short, easy to understand manner.

It is a nice link to pass on to

teachers or anyone working

with your child. "

Opening Autism

My Baby

Wrote Me a Letter

one-pager success

by Kodey & Jennifer Toney

I often have parents ask me what they can do to help their teachers understand their children more. They say, "I don't feel like they really know my child." We all know that we have exceptional children with great traits, but that seems to get lost sometimes when people focus on their disability. This is why doing a letter to your teacher is important.

Sometimes called a one-pager, a letter to your child's teachers, aides, and staff members is one of the greatest ways to let them know all about your child. This gives you an opportunity to tell all the good things about your child and show them off a little. It also lets the teacher know some of the things that your child likes so that they have something to talk to them about. You can also include things that may set your child off and cause irritation.

I'm going to include the letter that Jen wrote (with help from Konner) to give to his teachers last week. I hope that you can use this as a template, and I hope that you get to know Konner a little better because of this.

FIFTEEN THINGS ABOUT ME

kelsey Kelsey Weick

going back to school

2012

Please send

Halloween photos,

past or present ,

for October's

SSSA Notes

William, Harry and Evelyn Hefner 2009

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!