Sotos Syndrome Support Association


SSSA NOTES

December 2013

 

 

In This Issue
The importance of siblings
Last minute shopping can help SSSA
Connor
Tell Us Your Story
President's letter
New Board Member Bio
Order DVD/Handbook

 

      

   

 

"I captured a great picture of him on the first tobbogganing outing of the winter, he loves the snow so much and would spend all day outside playing hockey, building snow forts, having snowball fights and sledding!
William turned 5 on December 11." 
Keely and Neil Masson
Bolton, Ontario, Canada.



 

 

the importance of
SIBLINGS

   

 

Jealous Again

by Kodey Toney 

 

My wife, Jennifer, called me the other day and said, "Kruz just asked me out of the blue, 'Why does Konner have autism and I don't?'" 

We've always tried to explain to him that Konner has autism, but I'm not sure if he truly understands.

So, when I got home I laid down with him and Jen and tried to tell him the best I could.

Kruz is five, and is in a bit of a selfish stage. He's in that stage where if someone else has something he wants it. You know, like a toy he hasn't played with in months, but suddenly he sees someone else with it and he has to have it because he, "was playing with it!" I think he was a little jealous that Konner had something that he didn't have. 

I tried to keep it as simple as possible. However I really wanted him to realize that, while it's not a great thing, it's not necessarily the worst thing. 

read on......

    

 

 


Shopping + Goodshop.com=
SSSA benefits

   

 

Do You Shop On-line?
 Goodshop is an on-line shopping mall that donates a percentage of your purchase price to the charity of your choice! 

1.  Simply go to: Goodshop.com

2.  Choose SSSA as your cause.

3. Enter the store name.

 

There are 2800+ stores including Nordstrom, Macy's, Target, KohlsAmazon, as well as travel sites such as Travelocity and Hotels.com.

 

Just shop as you normally would on the chosen store's website. Donations are made automatically from the goodshop site.

 

Shopping on Goodshop.com is easy 

and a great way to make a 

donation to the  SSSA.

 

 

 

 

 

 

"telling your story"
Connor


 

My son, Connor, was diagnosed with Sotos Syndrome in 2009 at the age of 7. Up until that point we had a neurologist suspect that my son had Sotos but because of insurance barriers we had been unable to have the genetic testing performed. Connor initially received a diagnosis of autism (PDD/NOS) when he was only 18 months old but it was obvious well before then that Connor was just "different". His facial and physical features were distinct as he has always been a very big boy with prominent features.

Connor has many behavioral challenges and developmental delays but he never lets anything slow him down!

read more of Connor and his successes

 

 

 

    


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

 

No access to email? 

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.

 

 

 

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!!

 
 

  

 

 

THANK YOU

to all those who have sent in stories, article ideas 

and especially 

PHOTOS.

Keep Sending them in! 

 

 

visit us on Facebook          click here          

Merry Christmas and
Happy New Year!

 

from the 

President

 

 

Happy Holidays to my SSSA Family!  
 
I hope this holiday season finds each of you and your family taking time to enjoy the little things and there is no better way to do that than by our experiences with our children and through 
the eyes of our children.  
A few days ago our family was having a conversation as we were sitting in the car going through a car wash.  My son, Cole (17), reminded his sister, Megan (Sotos, 13), of how she used to have significant panic attacks every time we went through a car wash.  She would scream at the top of herlungs until we were out of the car wash.  Megan began laughing hysterically at the  thought of herself being scared of a car wash and soon we were all laughing and remembering the difficulty of getting our cash washed.  
 
Sometimes I forget how hard some things used to be for her and how far she has come.  
That being said, in the same 24 hour period of the car wash conversation I was explaining to both kids what a "white elephant gift exchange" was.  I asked them to help me pick out something in the house that we don't really want or need any more that I can give at this gift exchange.  
My son, in the straightest face, 
said "that's easy"......MEGAN!  
And the fight began.......some days are just plain "typical kid" stuff and other days I can be painfully or happily reminded 
of the challenges we experience.
 At the end of the day, these are the things I learn from and am thankful for........
not how decorated the house is for the holidays, if cards have been sent, when the baking will be finished, how many more trips to the store until present shopping is done and when the wrapping will ever take place???....
 

 

Blessings to each of you,

 Monica

monica and william

Monica Jacobs and William Hefner


 

      

   

 Jack Paterson at Kinder

Australia


Jack receiving his soccer medal
Australia

Thank you Brett and Melissa for sending these great pics of Jack!


 

 

 

New Board Member
Monique Guiger

   

   

 

 

Meet Monique Geiger

New SSSA Board Member

 

Anabelle was diagnosed officially at 18 months old, even though there were many textbook signs from the beginning.  Our first Sotos Conference was in Salt Lake City.  I wanted to be properly educated and I walked away feeling apart of a big family.  Since then I have been talking about Sotos with her medical team, teachers, specialist, family, even strangers here in the Northwest. 

Last year my parents came to the conference with us in Vancouver bc and Anabelle (age 8) showed me how much she's grown socially in just a couple conferences.
I am helping the SSSA because we need to bring more awareness to Sotos and bring the proper resources to our Sotos families. 
All of us working together can make a difference in our children's lives, their  future.
A rare genetic disorder doesn't need to remain a secret. We need to continue to bring the best opportunities to our children.

Looking forward to seeing everyone in 

Arkansas 2014!

Happy Holidays!

  

 

 

 

 

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
 

 

At Christmas, we are reminded how important our relationships and family are to us. 

These relationships will help us work toward a great life for our kids and family.

 

We hope that you are surrounded by people you love during this Christmas season and into the new year.

 
 
Merry Christmas 
and
Happy New Year 

 

~SSSA Notes staff

 

 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!