SSSA Notes
August 2015

      

 

Greetings,
 
I hope all of you are doing well and have recovered from the Disney Conference. I know it took me about a week to get back into my normal routine. Disney sure was exciting. It was great to make new friends and spend time with old friends. When we returned home I had to start making some difficult and stressful decisions regarding Daniel's schooling for next year. I'm sure this is something that most of you deal with as well. This was the first year I've really had to struggle with where to place him. 
 
Last year I made a somewhat controversial decision to place him in a school for special needs kids. Mainstreaming is great when it works but it doesn't work for Daniel. At his old school Daniel was struggling. He would get violent when getting ready to go to school and I was getting texts and phone calls on a regular basis about his disruptive behavior in school. When I placed him at the charter school for special needs kids he thrived. He was learning, he had friends, he was accepted and he felt safe. He loved going to school. No more violence or arguing about going to school. He would start telling me if we were getting close to time to leave. He would worry if we were going to be late. He absolutely loved it.
 
Imagine his utter despair when he learned that the State Board of Education in their infinite wisdom (said with extreme sarcasm) decided to shut his school down. They made a lot of claims about the school but the worst was that the kids "weren't" learning. Out of 80 kids they had 75 sets of parents saying how much their kids were learning and how happy they were at school. Our school board is fighting this decision but in the meantime they were forced to close the school. Which left 80 sets of parents "scrambling" with where to place their kids. The base middle school for Daniel was NOT an option. I've had a lot of friends send their kids there. They would send me text or say things like "I can't get them to follow the iep". The "administration doesn't listen to me regarding the iep". "there's no supervision". The "bullying is out of control". These were different sets of parents telling me this. Sigh. Private school wasn't an option because I couldn't afford it. 
 
This led me to home schooling. Something I never thought I would do. Home schooling takes lots of patience, structure, and planning. These are not my strong suits. However, the state of NC allows for parents to do a home school co-op and pay teachers to teach it. Parents will have to do volunteer hours but Daniel will be taught by three of his favorite teachers and will have some of his friends in class with him.
 
I'm wondering how many of you have had the same struggles I've had with the school system (I bet it's most of you) and how many of you have made the decision to home school?. I would love to hear from you. 
 
Kellie
 

  

Minnie, Daniel, Daniel's Grandma, Kellie and Mickey

 
 Recipes
 calling all cooks!

Looking for recipes that young Adults who have Sotos Syndrome use in their daily life in thoughts of compiling a Cookbook. 
Send your tasty recipes to newsletter@sotossyndrome.org

Young adults at the 2015 SSSA Conference
Orlando, FL
 
 2015 SSSA Annual Conference 
 July 10-July12/Presentations

Excellent presentations at the 
2015 SSSA Annual Conference. 
The Presenters' slides are on the web site:Members Only - Resources.
In This Issue
SSSA 
Video Corner

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DVD:
A Journey from Diagnosis through Life
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THANK YOU

Thank you to Sue and Mike Jennings for an excellent conference. Thank you also to the members of the conference team: Karen Osborne, Kellie Taylor-Penny, Monica Jacobs, Joanne Weick and James Gardner Gregory.
The SSSA Disney experience was wonderful!
Sue and Mike Jennings with the conference hotel planner and staff
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 It's Getting Better All the Time
 by Kodey Toney

 


Sunday morning I woke up early, after several episodes with the snooze button, and along with the family, made the three-hour drive to Oklahoma City to celebrate the 25th Anniversary of the Americans with Disabilities Act (ADA). I'm extremely glad that I did. Besides the fact that I got to see many friends I also got to see the true spirit behind the ADA. That is the hard working advocates that make the ADA worthwhile. 

Among the more than 100 volunteers and walkers there were family members, lawyers, social workers, friends, and self-advocates. These are the people that work tirelessly to make sure that themselves and others are protected by this act. 
You see, this is nothing more than words on paper if we don't do our share to make sure that others are following the laws and rules set forth on that day 25 years ago when President George H.W. Bush signed it into law. 
This has been a tremendous help to those of us coping with disabilities. It has given us some ground to stand on when trying to get equality in schools, work, and home. We have come a long way, but we still have a long way to go. 
We still have employers who do not believe in giving a chance to those with disabilities. We have store owners and operators who don't feel they need to do what is right to accommodate those with disabilities. And, we still have educators and administrators who feel they don't need to make accommodations and changes for inclusion. 
While this walk was as much a celebration of a great act put into place a quarter century ago, it is just as much a celebration of those who fight every day to make sure others are keeping up their end of things. The light keepers if you will of a beacon that started well over those 25 years ago. 
It's also a reminder that we have more work to do, but as long as we have great people like those who organized and participated in this near triple-digit heat then I am satisfied that everything will continue to get better.


 ADA "Walk and Ride" July 26, 2015, Oklahoma City



 A Manifesto for Radical Inclusion
 published by Dr. Al Power, Changing Aging contributor



The hallmark of this philosophy is that we not only stop putting the illness before the person; we actually relegate it to a place where it is no longer a barrier to inclusion and engagement in all things. 
Click below for the full article

 Conference
 quotes

"Well, we are home! Thank you so much everyone for such a wonderful trip and conference! This was the year for us! I met so many wonderful people and couldn't be happier to have such a wonderful second family to keep me sane, back me up and support me through life!! So sad to have left all of you but so happy to start planning for next year!!! Another huge thank you for electing me to the board!! You don't know what it means to me and just how excited I am!! See you all in less than a year!!!! Ahhh Sooo excited already!! I know I'm leaving people out in my tag and I apologize so to everyone I met thank you and can't wait to reconnect!!!!"

"First conference and it was amazing. Learned so much, met some great people and had a great time. Thank you to everyone involved in the SSSA for giving my family this opportunity. Words cannot express our gratitude. I hope we are able to attend other conferences in the future. Thank you once again and it was great meeting everyone."

"A great BIG THANK YOU to Sue Crosbie Jennings and her hubby for all of their hard work in planning this year's conference in the happiest place on earth! Why does it have to go by so quickly?!"

Check out more quotes at:

 

  

    

2015 SSSA Conference pics!

Orlando, FL! 

 


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