SSSA NOTES

October 2014

 

 
In This Issue
Disney tips
SSSA Story corps
Brain Breaks
President's letter
#1 Need
Order DVD/Handbook
Conference planning
United Way helps the SSSA

 

 

 

Halloween's 
past

   

    


 

 

 

 

 

Walt Disney World

corner


   
at Coronado Springs Resort pool



 

 

 

  

 

 

 

Family story
by Nita Lopez

   

Just wanting to say hello! My family is new to this (newer) site but was previously on a blog (years ago.) I am so happy to rejoin & have the kind of information to share with my family.. and ecstatic !! that the 2015 conference will be in Florida. Back when my son was diagnosed I could never afford to go to any meetings or conferences, next year's will be a little over an hour drive away! Made my day & excitedly let my son know we would be going this time!
My son Adam was diagnosed in early 80's. He also has scoliosis & kyphosis. Today my son (34 yrs old) is a wonderfully kind young man with a priceless & funny personality. He has had issues with learning but did graduate with a (special) diploma, and student of the year! He has a wonderful sister (Summer) who has always been there for him & still is. I know it can be scary & at times can still be (when thinking of the future) but Adam has blessed our family .. all that know him, love him. 

 

 

 

 

Halloween's 
past

   

  



 

 




2014 SSSA Conference
Little Rock , AR

 

 

 

Brain Breaks
resource

   

 

 

Check out www.gonoodle.com. 
 A free "brain breaks"  kids love!
a resource from Children's Hospitals and Clinics here.

 

 

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 
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To donate by check

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

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THANK YOU!!

 
 

  

 
 
2014 SSSA Conference
Little Rock , AR

 

 

President's 

letter

  

 

Recently, I had the same conversation with two different friends. They were both asking me if I was going to our next Girls Night Out (GNO). It's been about three months since I've been able to attend a GNO. All the women in this group are parents of Special Needs kids. Most of us met through a baseball league for disabled kids that want to play baseball. Some we met through other means but the point is that we found each other and decided to start hanging out. We always have a good time together and we are ALWAYS there for each other.

Support is the name of the game after all. For all of us and it's important. Whenever I attend a conference I always hear from at least one parent who feels "alone' or "isolated". It's a common theme especially because Sotos is so rare. The thing is that we don't have to be "isolated" even if we never see or meet another child with Sotos. My girlfriends don't have any children with Sotos. Two of them have children that are diagnosed with the ever popular "Other Health Impairment" because they can't figure out what exactly their child has and may never find out. We each have our own issues that we deal with but in reality a lot of the issues are the same. We attend therapy sessions, see the same specialists, deal with the same school systems, see each other at "special needs" events in the area, and deal with the unknown.

Why am I writing this to you in this letter? Because I want to encourage all of you that feel alone to reach out to other parents who have been through similar experiences. You don't have to feel alone. This is for you Dad's as well. We all need the support whether it comes from our biological families or our families of choice (or both). Reach out.

I'm going to take my own advice. I've been so busy lately that I haven't been able to attend a GNO since we went to the Rick Springfield/ Pat Bentar Concert in June. That's way too long. So come October 16th I'll be hanging with the girls. I hope some of you reach out and do the same thing.

 

Kellie

President of the SSSA

 

 

kellie   

Daniel, Kellie, Don and their dogs

 

 

 

 

#1 Need
by Kathy Snow

   

Great energy is devoted to determine what a person with a disability needs. Assessments are done, tests are given, observations are made, and more. Then more energy (along with many dollars) is spent trying to meet these needs.

For children with disabilities, professionals and/ or family members may focus on the perceived need for therapies or services which attempt to get a child to walk, talk, behave appropriately, make eye contact, master the pincer grasp, read at grade level, and much more. For adults with disabilities, the focus may continue to be on some of these same things (especially behavior!), as well as habilitation, job skills, transportation, and more.

Based on almost 20 years of experi- ence, it seems the #1 need of the vast majority of children and adults with disabilities-regardless of the type of disability, the age of the person, or anything else-is seldom identified by professionals or family members. What is this #1 need? Friends. 

Read on.....
 

 

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

 

 

 

 

Plan Ahead
Travel Links for Disneyworld

   

 

 

 

You are not Alone
by Kodey Toney

   

This week I want to talk about community. I know that this may seem like an obvious subject to some, but building a community around you and your child with a disability will help make your life easier.
I was reminded how important a strong community is in thinking about the Annual Skate Slam in the cities of Heavener and Poteau in the state of Oklahoma. The people involved in the three-day event were awesome in getting things organized and getting the word out. There were more than 100 participants, vendors, and organizers, and each worked in harmony to make the weekend go smoothly. This was because of the group that organized the event. 
That got me thinking about how this is the same with families with disabilities. You have to have a strong core group to make the other parts of your world work together. That community controls what happens in the life of your child, so you have to try to find that harmony for things to work right.
First you have to build your community. This can, and probably will, include family members, therapists, counselors, teachers, administrators, doctors, and other families.
Some of these seem obvious, but you must get your family members, both immediate and otherwise, on board with what's going on. This affects everything from family get-togethers, to emergencies, to just having some alone time (who knows what that really means).
The school is a good example of harmonious communities. You have to keep this in mind in order to get the resources you need for your child. This may be the one that tests your limits a little, but I promise that if you keep them in your community and on your team things will be good for you and your child.
You must find others that have been through what you have. This will be a great part of your community. This works in so many ways. Support groups are great for just finding out what is available in the area, and they are a good sounding board to vent to. 
You have to understand that you are not in this thing alone. Sometimes it feels that way, but you will always have someone who has been there and seen some of the same things you have. We all have different stories, but in the end it's all very alike.

reprinted with permission by Kodey Toney
Pervasive Parenting



2014 SSSA Conference
Little Rock , AR

 

 

 

United Way
& the SSSA

   

 

Do you already give to United Way???

If you donate to United Way through your company, why not direct those funds to a charity that you are involved with??? The SSSA is a 501(c) (3) tax exempt organization through the IRS.  In the fall, when your Human Resources Department hosts a United Way campaign, ask them to direct the funds to the Sotos Syndrome Support Association, P.O. Box 4626, Wheaton, IL 60189.  If your employer needs our Tax ID number or documentation necessary to prove our tax exempt status, just contact the SSSA at treasurer@sotossyndrome.org or call our toll free phone line (888) 246-7772 and we will be glad to send you the supporting documentation.


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the Munsters
aka William, Harry and Evelyn Hefner 2010

 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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