SSSA NOTES

November 2014

 

 
In This Issue
Got Transition?
$ learning products
Conference (Disney) planning
President's letter
Future planning reading
SSSA Parent Story
Disney tips
Order DVD/Handbook
United Way helps the SSSA


 

Guess who got her very first, authentic, real-live, official paycheck??? Check out the working girl!!
Way to go Kelsey! 

 

 

 

Sibling Love....
the good, the bad and the ugly
by Randi Gillespie

   

It had been a typical morning in our house - kids waking up way too early to raid the freezer for frozen chocolate chip waffles instead of cereal or fruit. I overhear their voices giggling and making silly jokes to one another while playing "Minecraft" on their iPads. They are adversaries one moment and each other's greatest champions the next.

But all good things must come to an end, and Liam, 7, became upset with Maddy, 9. She was not following his rules and was becoming too silly for him. She persisted with her ways, ignoring his rules. She was unaware that her actions were pushing his buttons. Liam was losing his cool. "Just listen to me and do what I say. Maddy, don't do that, don't push that button!" Maddy giggled, continuing to play the game her way. All she wanted to do was play - without limits or rules. All he wanted to do was to have her play by his rules.

Provoked, Liam shouted at Maddy: "I wish you did not have Down syndrome." Yep, he said it.

He instantly looked at Maddy, expecting her to respond to his angry words. Maddy continued to play her game, giving no consideration to what was just said. Unable to get a reaction from his sister, Liam turned his eyes toward me. Our eyes locked and, without hesitation, he did what any 7-year-old would do - he ran to his bedroom. He likely was upset that he said it, but mostly he was probably anticipating the consequences I would deliver.

Should there have been immediate consequences to his unforgivable statement? Just the thought of my own child using such harsh and hurtful words, especially when directed at his sister, should have been devastating. Admittedly, his words cut right through me because my daughter has a disability. But why? They were Liam's feelings, and I certainly was not going to fault him for feeling what he was feeling at that moment with his sister. However, his response needed to be addressed.

Contrary to what Liam might have thought my reaction was going to be, I empathized with him. I was also very proud of him. That statement may not make me the most popular mom, particularly with parents of special-needs children. Do I believe that Liam wishes Maddy did not have Down syndrome? Yes, I do - for now. At times, I am certain my son feels slighted. He wants the entire "sibling package," with both sisters wrapped up nice and neat and tied with a bow. He has no idea that sibling love, any love for that matter, comes in a variety of packages.

At his age, he does not yet know that having a sister with a disability will positively shape him in ways that he cannot imagine. He is embarrassed at times by Maddy's actions and behaviors. As he matures, this will allow him to grow to accept everything that makes Maddy who she is.

He will have a broader perspective of what "normal" is than most of his peers. Hearing his own sister being referred to as the "R-word" will enable him to teach those around him that it is wrong to dehumanize others with such offensive language. He will remind people that his sister has the right to be valued, respected and accepted - just like anyone else. He will be courageous and strong and will not allow bullying to be tolerated.

He will recognize that the diagnosis, condition or illness does not define the individual. It is simply a part of what makes him or her unique.

He will examine and interpret the world differently. His eyes will see things in a way that others who do not have a sibling with a disability cannot.

He will learn to advocate for himself and for others who are at a disadvantage. He will do so without hesitation because he has learned from his sister. He will understand the difference between thinking about doing the right thing and actually doing the right thing.

He does not know it yet, but he will be the man others will look up to for courage and values. The frustrations that Liam voiced that morning will eventually fade and yet will become part of the fabric that will turn him into the caring man he is meant to become.

Later that morning, Liam returned to the playroom to resume playing "Minecraft" with Maddy. She welcomed him back, saying with a huge grin, "Hi Liam, no rules, OK?" Sibling love: The good, the bad and the ugly ... I would not have it any other way.

 

reprinted with permission by 

Randi Gillespie lives with her husband and three children in Northbrook, IL. She is director of special-needs services at Oak Wealth Advisors.


 



Thanks Joanne!

~Ellyn H. ed.
 



2014 SSSA Conference
Little Rock , AR
2014 SSSA Conference
Little Rock , AR

 

 

 

Transistion 
reading

   

 

YOUTH PARTICIPATION IN TRANSITION

PLANNING 

"Youth's participation in their transition meetings encouraged them to think about what they wanted from adult life and how their school might help them achieve those goals."


 

 

"There was a growing awareness that the transition meetings were a place where youth could develop knowledge & skills that would help them in their adult lives."

 

 

  Full article 

 

 

 

New Products
the money edition

   
 

 

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!!

 
 

  

 
2014 SSSA Conference
Little Rock , AR

 

 

 

 

Plan Ahead
Travel Links for Disneyworld

   

 


I was surfing the net looking for inspiration and came across this article. I think it would be a great link to include in the newsletter and could serve as this month's tip. As well, you could include my email contact if people are looking for more conference info. Robin, our TA, has said that people are asking her questions about the conference that she doesn't have the answers to and I've told her to send them my way.

here's the link to the article:





 
or they can contact Robin Fitch, our TA:

 

 

Jake two years ago at Disney 
(at the Haunted Mansion ride) in his Halloween costume
visit us on Facebook       
click here          

 

 

President's 

letter

  

 

 

When contemplating what I would say in this letter I realized that I didn't have a clue what I would write about this time. I asked our incredible Newsletter Editor (Ellyn Hefner) to send me some old newsletters so that I might get an idea. What struck me in reading through them is the compassion, caring, and strength that the past Presidents have all displayed.

 

One wrote about answering the 800 number line. Making it sound like it was an act of love to do it and to help others. Another wrote about her child. I saw a quote from an old friend (who has since passed away) that said "happiness is an attitude".

 

That line really struck me. I forget sometimes that I do have the choice to be happy. To remember the joy of having a child with Sotos Syndrome. The obsessions, incessant talking, the ever present anxiety, and occasional temper tantrum can drive me to want to bang my head against the wall. The truth is that I wouldn't change it though. All of it..... the good and the bad make Daniel who he is and make me a proud Mama. After all, it's my choice how I handle Daniel having SS. It's not his choice to have it.

 

A fact I intend to remind myself of the next time I am wanting to bang my head against the wall. I may have to remind myself a lot!! lol

 

Sincerely,

 

Kellie

President@sotossyndrome.org

 

 

kellie   

Daniel, Kellie, Don and their dogs

 



 
"Are sotos kids growing up too fast?"
~Owen Eigenburg

 

 

 

Necessary  Reading
financial planning
Alternatives to guardianship

   
Alternatives to Guardianship

"How will children with special needs be able to make decisions as an adult? "

 

"Families may be concerned about what the future holds for their child with disabilities. Parents may be fearful if the child will be able to live independently and make decisions for themselves. Children with special needs must have input, based on their abilities. Families and professionals need to start at a young age to help the child develop decision-making skills and maximize their potential as adults. "


 

-Is Guardianship the Only Way? 

-Guardianship Alternatives   

Full article

  
 
Legal Side to Financial Strategies
"Creating a financial strategy - which includes financial and legal elements - is smart, practical, and satisfying. Especially when a family member has special needs. "
 

 

DEVELOPING

MONEY HANDLING

SKILLS 

"As you become more confident in your son or daughter's ability
to handle the responsibility and he or she becomes more confident in their ability to handle the transactions, decrease your involvement."

Full article

 

 

Trusts & Bequests

"Planning is critically necessary to avoid unintended consequences in which your wishes are not carried out and the person you care about so deeply is left at risk of losing essential public benefits."

Full article

 

 

 



2014 SSSA Conference
Little Rock , AR

 

 

 

Elizabeth's story
Mercy's mom

   

In the summer of 2012 we were adopting for the 2nd time from Bulgaria. Tom insisted he needed to go back for a little girl. We had adopted all boys. I was reading the listing of available children regularly. My heart was drawn to the boys. The boys were chosen less often. There was a new listing, a toddler boy with Sotos Syndrome. I had not heard of Sotos so I clicked on their Wikipedia link and read about it.

 

click here to read on.... 

  

 

 

 

 

Walt Disney World

corner


   
at Coronado Springs Resort pool

  

 

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

 

 

 

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.





Siblings 2013

 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!