SSSA Notes
May 2015

      

 

Hello my friends,

 

 Discouraged, exhausted, frustrated, angry, emotional, and irritable. These are all adjectives that have described me in the last few weeks. I suspect that those words apply to a lot of you as well. I read the Facebook pages regularly and read the stories of how some of you are struggling.


 When Daniel was six and was discharged from all his therapies at I thought we were done. We were,

for a while

, but in the last 8 months he's had to go back to Physical Therapy twice a week, Speech Therapy once a week, and now we've added a Chiropractor twice a week as well. He's been diagnosed by an Orthopedic Dr. with "bursitis of the hip". It's very painful and he's actually asking for pain meds. We all know what that means for a Sotos child. The Chiropractor even said he had the "body of a 100 year old". That hurt. read more of Kellie's letter

 

Kellie

SSSA President

President@sotossyndrome.org

 

Daniel and his friends at Special Olympics

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

The Coronado Springs Resort has discounted their typical room rate just for our group and has agreed to extend it for 3 days before the conference and 3 days after.  For help planning your travel and Disney experience, please contact travel agent, Robin Fitch. 

cut-off is June 10 and rooms 
are going very quickly!
we are almost at capacity for this conference

If you haven't booked your rooms yet at CSR, please do so ASAP! Our room block is completely filled and Disney has deactivated the online booking link. You can call the number below or call our TA and still book at the discounted rate as long as there is still availability at the resort. 
"Don't delay, call today! :-)" 

The phone number for guests' to call to book their reservations is 407-939-4686. They are open seven days a week; 8:30 AM - 6:00 PM EST Monday -Friday and 8:30 AM - 5:00 PM EST Saturday & Sunday.
________________________________________


Also,  it is HUGELY IMPORTANT to the conference organizers that you fill out the childcare form after you complete your registration.
In This Issue
SSSA 
Video Corner
SSSA 
Dues
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2014 SSSA
Conference

DVD:
A Journey from Diagnosis through Life
created by the SSSA
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Large DVD Handbooks PHoto

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Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

 


THANK YOU
 
 Inappropriate Behavior
 by Kathie Snow

"Inappropriate behavior"-it's a biggie in Dis- ability World. Sometimes we use other descriptors like "problem behavior" or "challenging behavior." In response, we write "behavior management programs," create plans for "positive behavior supports," and/ or institute other remedies. It's been reported that "behavior specialist" is one of the fastest-growing career opportunities. We define something as a problem (behavior), and then we need to create jobs to fix the problem!

Is there consensus on what constitutes inappro- priate/problem/challenging behavior?
No. What's inappropriate in one person's mind may not be perceived that way by others. And I've always wondered: who is the behavior a problem for or challenging to? Not the person who's doing the behavior, right? It's a problem and/or is challenging to those around him/her! Words like "problem," "challenging," and/or others seem to be euphemisms (and are attached to the person doing the behavior). If we're honest, we might say "irritating behavior" or "aggravating behavior"-words that indicate how a person's behavior makes us feel! When we attach the words to the person, we feel justified in trying to change/manage the person instead of trying to change ourselves. And how does one manage another's behavior anyway? Would you like someone to try to manage your behavior? What would that look like and how might you respond?

I'm always unsettled by conference break-outs...(click here to read more of Inappropriate Behavior)

 

 
 A Birthday Party
 to remember

"From the moment Mackenzie has been born, she's made a unique mark on the world. She's been a light to everyone that knows her," says mom Jenny Moretter. 

Click here to read more from the People article on 
Mackenzie's birthday party to remember. 

 

 

"Paul, Darren, Nicole and I are simply a group of Facebook and Twitter friends. When we heard the news spread on social media, we each took a role in orchestrating the event. However, it was truly the community that made Mackenzie's birthday so successful. 

The Minneapolis/St. Paul community is like no other. From Shakopee Mayor Brad Tabke, to local businesses and city council officials, the event was filled with love, simply because every individual that touched the planning, did so with care, love and concern for Mackenzie's family- making sure the family felt safe and supported. 

The additional funds are going towards creating good in the community. The family has requested that some of the funds go towards the Sotos Syndrome Foundation, which is the organization behind spreading awareness behind the type of syndrome Mackenzie has. Since we exceeded our original goal, we have a few meetings coming up to decide how we can help other children as well. We never imagined one single event would have this reach. We're proud to ignite the conversation around making sure EACH AND EVERY child feels loved and cared about on their special day. Planning a party in under 12 hours was a monumental task, but creating thoughtful dialogue about where the additional funds should go is taking longer- as it should. We want to represent the community's wishes and those of the family, in exactly the right way. 

What struck me most, is this wasn't the effort of simply the four of us: It was the community as a whole, coming together for one, incredible little girl. Mackenzie is an individual with Sotos Syndrome, but that is not all she is- she is caring, funny, beautiful, and more eloquent than you could ever imagine. While this event was for Mackenzie, we constantly heard from over 450+ party goers and thousands of people on her event page, that THEY were truly touched. And, so were we."

written  by Kate-Madonna Hindes  on Mackenzie's Birthday Party Facebook page

 

Here is another link to an article about Mackenzie's birthday party:

How NFL Players Helped Give a Minnesota Girl a Birthday She Will Never Forget

 

 
Blain
ten years old

Disneyworld 
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!


Adrian
6 years old

 
 Growing abilities  
 with clever, crafty, creative hacks

 

One of the most frustrating things about having a child who wears AFOs is how hard it is to find shoes to fit. My daughter started wearing AFOs at 3 months old. For the first year, she simply did not wear shoes. However, when she started pulling to stand I knew I needed to tackle the scary beast of shopping for shoes.

Shoe shopping is FRUSTRATING when your child has AFOs


 

 

 


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