SSSA Notes
March 2016

Hello my Friends,

In my last letter I said that I wanted to start tackling topics that are directly related to Sotos. Here's one we can all relate to....... obsessions. Those of you who know Daniel know that his two big obsessions are mail and trash/recycling. The biggest being the trash (which of course has morphed into yard waste, raking, and memorizing what days every neighborhood in Raleigh gets their trash picked up. Yeah, this is serious). I can remember when my brother was here on business a few years ago and we went out to dinner, where Daniel talked about trash nonstop. He peppered Greg with questions about his trash delivery. Daniel was particularly fascinated when Greg told him that where he lives the trash truck actually goes into the driveway and picks the trash up from there. After a while Greg started chuckling and said "Daniel, I don't think I've ever talked about trash so much in my life" to which Daniel responded "I know. Isn't it great?". My poor brother was trapped in that booth with an OCD child talking trash. lol

I used to think that Daniel was alone in his love of trash and trash trucks. Seems I was wrong. I know this because Daniel spends time on Youtube watching trash truck videos. Daniel is on my Google account and has figured out how to have Youtube send me notices when new trash truck videos are loaded. It notifies me 
a lot. I thought America's obsession with the Kardashins was weird but at least they are people. This is trash. Don't even get me started about the time he threw a two hour temper tantrum because I wouldn't let him call the trash people and tell them that they hadn't picked up our trash that day (it was a holiday). He didn't care. 

You would think that his room would stay clean since he loves to put things in the trash but noooo.....It's a daily struggle to get that room clean. Every once in a while he'll get up in the night and eat something in his room (big no-no on both fronts). I'll find out about it when I find the remnants of chewed up food wrappers on my living room floor because the dogs found the wrappers in his room. One of my favorites is when you ask him where something in his room went (like book shelves) and he says "I put it in the trash yesterday" and the trash has already been picked up. The good news is that we only paid $5 for the bookcase.




Linnea Dugan and Kellie at the Winter Board Meeting
COLLEGE
life
by Owen Eigenberg

  
I had the opportunity to meet and talk with speaker Temple Grandin. She gave me excellent advice for my career path, which is film making.


To just do it.


Owen Eigenberg
UMSL 

In This Issue
SSSA 
Video Corner

This is what inclusion looks like:

Talking with USA Today, A fifth grader at Franklin Elementary in Mankato, MN a very important question. "Why single out somebody who has special needs?" he inquires. As indicated by the U.S. Division of Health & Human Services site, kids with incapacities are at an expanded risk of being harassed. "Any number of variables - physical helplessness, social aptitude challenges, or narrow minded situations - may expand the risk," it says. 
Be that as it may, for James Willmert, a special needs student, his five friends have worked eagerly to battle off bullies and incorporate him in class exercises. They started by including him in their schoolyard exercises, inviting him over for video games, and talking to him at length about his favorite hobby, sports. What's more, what these five young men have done have really had a significant influence on James' socialization, and his mom says his improvement has been amazing. "They're changing him," she says with a smile.
~USA Today




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P.O. Box 4626

Wheaton, IL  60189

 


THANK YOU

 Membership Update
 

To all MEMBERS of the Sotos Syndrome Support Association - we have a new membership module on our web site. If you have paid dues in the past year, you should have received an email the week of March 5 from WordPress/Sotos Syndrome Support Association telling you to set up your own, unique credentials to access our Members Only portion of our web site. Your unique user id is your email address but you must set up your password. The generic userid of "sssa" will no longer be valid. 

Check your spam folder if you have not received it. If you have any questions, contact webmaster@sotossyndrome.org.


 New member story
 by Twila Jenson


Hi!  I'm Twila Jensen.  My husband (Mike Jensen) and I adopted two biological brothers that have been diagnosed with Sotos Syndrome.   The boys, TJ and Carter are 9 and 6 years old.   We were foster parents to the older of the two boys for a year when his little brother moved into our house (after their biological mom and dad terminated their rights).   We just adopted them November 21st of last year and feel incredibly blessed to have these two special boys.

Both kids are in mainstream school and have IEP's.  They have been doing really well on their plans and making great progress.   Their school has been great.   We do some additional tutoring for our youngest while our older child works on homework with his father after school every day.  We  take the boys to OT (one more for speech and the other for motor).   They also are involved in skills therapy and we are involved in activities that help their motor skills such as swimming.   They love activities and sports. This has seemed to help a great deal with their motor skill development.   

Both my boys are very active and adventurous.   TJ loves to play guitar and Carter loves Karate.  Both boys work really hard at and love earning "acts of kindness" 
(something the younger one needs for each karate belt).

We joined the group because we would love to learn more about what has worked well in helping children with Sotos Syndrome flourish.

 
"Welcome Twila and family. We look forward to someday seeing you at a conference."
~SSSA Family


 
 You and I
 by Kathie Snow
 


If you do not have a disability, things are one way; if you do,things are often vastly different. The comparisons can be illuminating and can lead us
 to positive change.








 
 2016 Conference
 Young Adult track
 

2016 Portland Annual Conference July 8 - 10
Challenge Workshops
Opportunity for Adults with Sotos or Similar Syndromes
This year at the Portland Conference we will be initiating a new track for adults with Sotos and similar syndromes. Participants must be 18 years or older. The track will run concurrent with the presentations on Saturday from approximately 9 am - 4 pm. This will be offered for individuals too old for child care but not interested in attending the longer, intense presentations traditionally offered. Individuals must be independent as staff will be on hand to coordinate the program but will not be responsible for supervision.
The program will be educational, challenging and fun. Experts will present on Sotos and other topics but the presentations will be shorter and geared to the audience.
Part of the program will allow for participants to present topics of interest to the group. The presentations should be 7 minutes long. The target audience will be other adults just like you. Suggested topics could be: favorite hobbies, cooking, recipes, scouting, crafting, driving a car, working, organizational skills...the possibilities are endless. Presentations should be prepared and practiced. Bring props, items to share or handouts. It is an opportunity to hone public speaking skills and share interests with your peers. Topics already scheduled are Sotos 101, Therapeutic Horseback Riding, Physical Fitness and Comicon.
The third part of the day will be purely social. There will be time available to socialize, mingle and just hang-out. An off-site activity may be included.
If you are an adult with Sotos or a similar syndrome and would like to prepare a 7 minute demonstration or presentation please contact me JoanneWeick59@gmail.com. Have an idea of what your topic will be and provide your vital information so you can be included in the day's program.
If you are an adult with Sotos or a similar syndrome and would like to attend, please watch our web site for conference registration starting in March and select the Challenge Workshops option.



 Poetry
 by Mark Heath


We are special people 
One of the elite
Nice and kind and thoughtful
The best you'd ever meet 
We had our little problems 
To cope with in our years
But we carry on regardless 
Smiling without tears
So as long as we keep going
Facing every day and new
We will always be together
Not the others; me and you.





 Portland - SSSA Conference 2016
 conference registration is OPEN


Conference Overview

Learn, Network and Bond!

The Sotos Syndrome Support Association holds a conference one weekend every summer. Activities take place from Friday afternoon through Sunday afternoon.
Families and professionals come from all over the world to learn, network and bond with one another. We combine a program of speakers with social events for the whole family to educate and inspire families on their journey with Sotos Syndrome.
Registration and Child/Young Adult Activities fees range from $135 - $155 per person.


 

 




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P.O. Box 4626
Wheaton, IL 60189
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