SSSA Notes
June 2015

      

 

 

Hello Everyone,
 
I hope this letter finds you well and getting ready to attend our annual conference in Sunny Orlando. I wanted to make sure that all of you who are attending consider bringing an item to donate for the silent auction. The proceeds go to the Carol Richey Fund. The Fund provides assistance to families who wish to attend a conference for the first time. It's a great way to raise money to help Sotos Families.
 
The items can be small or large. They can be expensive or inexpensive. Anything you want to donate is acceptable. We've had everything from gifts baskets, tea, jewelry, purses, paintings, to kids toys donated . It's really quite an interesting sight to see all the auction items. Some people even bring gifts that represent the area of the country that they are representing. I'm thinking about bringing a gift basket made up with items that are popular in North Carolina or maybe something else.....who knows?
 
It's really a wonderful experience. Please remember to bring an item to the auction and bring some extra cash to bid on some really neat items. 
 
Can't wait to see you in Orlando.
 
Kellie
President of the SSSA
 

  

Kellie and Daniel

 
 2015 SSSA Annual Conference 7/10-7/12
 Registration CLOSED

 
 Registration is closed for the 
SSSA 2015 conference in Orlando. 
Conference is a great way to meet families 
who have a child with Sotos syndrome. 
Consider attending the 
2016 SSSA conference 
in Portland, OR.

 
 2015 SSSA Annual Conference 
 July 10-July12

If you are attending the 2015 SSSA conference, 

it is HUGELY IMPORTANT 
to the conference organizers that you fill 
out the childcare form 
after you complete your registration.


Also.....
please check your spam folder for an email from regonline.com or volunteerspot.com. These are two online planning sites we are using to assist us in organizing doctor appointments and other conference activities. You need to use the special link to make your doctor appointment.
Thank you!
In This Issue
SSSA 
Video Corner
DVD:
A Journey from Diagnosis through Life
created by the SSSA
$5 + shipping
Large DVD Handbooks PHoto

 Order info

Donate

to the SSSA

Make a tax deductible donation to the SSSA TODAY!!

To donate by check:

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

 


THANK YOU

Silent Auction

donation

The silent auction is held Friday night at this year's conference in Coronado Springs Resort n Orlando, FL.

 

The Silent Auction at every conference is always a big hit.

 

Ideas include gift cards, toys, movies, jewelry, favorite sports team memorabilia, well heck, we women like to shop for EVERYTHING right??  

All proceeds increase the Carol Richey fund, which helps families attend their first conference! 

 

Thank you.


SSSA 
Dues


Click here to pay 
SSSA yearly dues
 
 SSSA General Meeting
 Notice


Take Notice that the 
Annual General Meeting of the Members of 
Sotos Syndrome Support Association 
will be held at: 

 

Disney's Coronado Springs Resort

1000 West Buena Vista Drive

Orlando, FL 32830 

 

Sunday, July 12, 2015 at 9:00 a.m. local time for the following purposes:

 

1. To receive the financial report of the treasurer

2. To receive the membership report

3. To elect directors; and

4. To transact such business as may be properly come before the meeting or any adjournment thereof.

If you are unable to attend the meeting, you may appoint another person to cast your vote by completing, signing and returning the attached form of Proxy. You may appoint any person by inserting that person's name where indicated or you may appoint the President, Kellie Taylor Penny, by checking the box next to her name.

Notice of Proxy

 

 

 
 New Member
 Kristi Hays

 

"Ashlin has the energy of 10 kids and sleeps 8 hours a night without a nap. She is full of life and so much energy!  "

 


My name is Kristi Hays and my 3 1/2 year old daughter, Ashlin, was recently diagnosed with Sotos syndrome.  Ashlin's pediatrician and the specialists we have seen, we've been trying to find out her diagnosis for a while.  We've had a lot of misdiagnosis but when we went to Emory Genetics we did blood work to be sure and it came back positive.  

Ashlin is a very happy child.  There are no strangers anywhere we go; she says "hi" and "bye" to everyone.  Everyone knows her at the grocery store.  

Ashlin loves swimming, traveling, riding trains and going on airplanes, Elmo, catch, dressing up, and pretty much anything that is girly.  Ashlin has never had any problems or delays with gross motor skills but she is behind with speech and some fine motor skills.  She is 46' inches and almost as tall as me. 

I call Ashlin "Mimi" for "mini me" because she wants to carry a purse when I have mine or wear a skirt if I am wearing one and loves putting on my make up and tutus. Ashlin is my little mini me and she's my best friend.  She loves helping me cook and her favorite is mixing eggs.   She's very attached and we do come across some separation anxiety.  Ashlin has the energy of 10 kids and sleeps 8 hours a night without a nap. She is full of life and so much energy!  She wants to interact with other kids and tries every time we go to a place and she sees kids but because of her speech delay it's a little hard.  But we do have one play date friend and I'm so grateful to have them in our lives.  

    She is going to special education at a public school and loves the school bus.

I have so many questions about everything and am still trying to cope with Ashlin's diagnosis 

but am happy that we have an accurate one now.  I'm happy I found the Sotos Syndrome Support Association online and all the information about Sotos.  

 

  
Kristi and Ashin Hays


Disneyworld 
links
newly added links


 Conference
 tips

Sometimes it is hard to know exactly what to pack when planning to go to a conference,  

here are a few basic ideas to keep in mind.

  • o   Comfortable clothes to travel in, shoes that are easy to get on and off. When going through security at the airport you will be asked to remove your shoes.
  • o   You will want to wear shoes and clothing that are comfortable, most conferences last all day so you will want to be as comfortable as possible....click here for more helpful conference tips
Something great about the SSSA conference which is not typical with other conferences is the doctor visit. Having an opportunity to speak with and listen to Dr. Cole and Dr. Schaeffer is truly a fantastic part of the SSSA conference. 
Here are tips for that opportunity at the conference:
  • bring your child's care notebook which might include: test results, genetic test results, CT/MRI scans, IEP (the doctors may not need all of this info) 
  • start compiling a list of questions you may have....they are there to answer questions and will not physically examine your child.  
  • Having every thing prepared will make the most of your visit during the limited time you have with Dr. Cole and Dr. Schaefer click here for more info on doctor visits
  • Most of all, you will meet one of two great doctors with great care for our kids!               Enjoy this wonderful opportunity!

 
2014 SSSA Conference
Little Rock, AR

 
 Keeping it Together
 by Kodey Toney

 

I recently attended the Joining Forces Conference hosted by the Oklahoma Family Network.  They do wonderful things throughout the state. This conference was no exception. I wanted to share a few highlights of the day with everyone.
Heather Pike, administrative director, opened the day with an African proverb that I hadn't heard before. It says: "If you want to go fast, go alone. If you want to go far, go together." If you really think about this one there are so many ways to interpret it, but I think the main thing is that we need to work together to help get farther in our life goals. Whether that be for ourselves or our children, we can get a lot further if we have help and let others assist us. 
Sheli Reynolds, PhD., from the University of Missouri at Kansas City Institute for Human Development led the activities for the day. Her presentation was about how to set a LifeCourse for your loved ones and follow it throughout their many stages in life. 
One part of the discussion was about death and how long your family member has to live. This is a tough one for many. One of the parents at the table said that their biggest fear was that they would have to bury their son. However, the alternative is just as frightening. If we are here at least we know our children are being taken care of, but if we're gone we have to trust others. That's a difficult thing to think about. 
Reynolds said, "if I don't have hopes it's hard to get out of bed in the morning." If we don't have a positive outlook on our lives and the lives of our children then it makes it tougher to function each day. You have to continue to think about the good things in life, no matter how hard that may be.
Reynolds was talking about how we have to work to make our children as independent as possible. I've talked about this before, but our ultimate goal is to eventually get rid of the paraprofessional or aide. If she's any good she will work her way out of a job, which is what we want. Reynolds said, "it's going to be hard to get a girlfriend and eventually a job with a para by your side." We have to be working to let the child do as much for themselves as they possibly can. 
"If we start in kindergarten segregating a child how do we expect them to have a job or manners later in life?" Reynolds was asking how a person that is not around those situations can learn from their peers? 
This is something I've talked about before as well. I think as much as possible the child should spend time with peers. Are there times when they need to be pulled aside for certain things? Sure, but only when necessary. We don't need to send a child down the hall just because you don't want to deal with them, or because they're not acting like everyone else. They'll never learn how to act like everyone else if you keep send them away from everyone else. Praise the others when they do good things. This will show "all" the children what you expect, especially those with disabilities. 
In all, this was a great conference and I learned so much. I hope what I've passed on will help.



 

5 Girlfriends 

SSSA Conference past! 

 


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