Sotos Syndrome Support Association


SSSA NOTES

September 2014

 

 

In This Issue
Essential Reading
Season of IEP
Conference planning
United Way helps the SSSA
President's letter
Helpful Websites
WDW corner
Order DVD/Handbook


 
Owen Eigenburg
Eagle Scout Recognition Night 
Busch Stadium

Congratulations Owen!



Jalen's 1st day of 4th grade

 

 

 

 

Back to School

essential reading


   

An Essential School Supply

the IHP
Discussing an individualized healthcare plan (IHP) with your child's school nurse is one way you can prepare for the school year and make sure their special needs are addressed accordingly. 

 

 
BULLYING:

PREVALENCE & RESOURCES 

Proactively emphasizing and teaching positiveexpectations and values such as respect, acceptance, empathy, positivity, cooperation and peaceful coexistence can serve to establish a new climate. 
 

In each state there is a Parent Training and Information (PTI) Center which provides technical assistance to families as well as professionals. PTIs provide information about the rights of the students and the responsibilities of the districts. 

 

Bullying 

What Can Be Done? 

 

EMPLOYMENT & TRANSITIONING

WHEN EQUITABLE DOES NOT MEAN EQUAL: 



New products for the new school year:

New Products 

 

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Happy Birthday Brody!

 

 

 

Season of IEP
Sultans of Swing
by Kodey Toney

   

Since IEP season is in full swing, and I've been working with several parents lately on their children's Individualized Education Program (IEP), I thought I would go over some things that might help you get prepared for your next meeting with the school. 
 

Here is a short list if things I would recommend to be prepared to meet with your team. 
You want to make sure that you have all the information from the school that you need to help provide your child with the best education possible. You can, and should, request your child's complete education file contained in school records. This can include grades or report cards, teacher notes, classroom papers, discipline reports, progress reports, correspondence, and any tests or evaluations. These can be vital in determining what services and modifications may be necessary in the IEP. This can also help you determine if there are any new evaluations needed.

 This means that you should especially request any evaluations that will be presented at the meeting. 
I would make sure that you make a request for this information early, a week or more out, and do it in writing. You should always do any correspondence with the school in writing. Pete Wright of Wrightslaw always says, "If it's not in writing it wasn't said."
If you talk to someone, and they say they are going to do something, but it's not in writing, it's a good idea to send an email soon after explaining what was said. For instance, if someone says that they will do an evaluation on your child for speech, I would email as soon as possible and say, "It's my understanding, per our conversation today, that you are going to do a speech evaluation this week. Am I correct in my understanding?" This does two things. It starts a paper trail, and it prompts the other person to answer your question. 

One thing you should remember is, if you are not 
satisfied with the school's evaluation you can request an outside or independent evaluation. 
I've said this several times, but it's worth repeating, it's not good to have an us vs. them mentality. Make sure that you are trying to keep open communication with the teacher and others at the school. You know your child well, and they know what's happening in the classroom. This is a "team", so team up and help your child.
You may even want to request to observe the teacher and student in the classroom, but I will throw out a little caution on this one. First of all, your child will probably act a little different if they know you're in the room. The teacher probably will not act the same either, but they may not welcome you with open arms either. 
Make sure that if you currently have an IEP in place that you review it. If it's been a while since the last one then there are things to look at and make sure that the goals are still appropriate, and you are still heading in the right direction. 


 

 

 

 

 

Plan Ahead
Travel Links for Disneyworld

   

 

 

 

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.





Kelsey, Harper and Megan
 

 

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!!

 
 

  

 
 
Dan teaches English in Mexico
https://www.youtube.com/watch?v=BCqswvxDqv0&list=UU_Z82UniAOksRvmvYYT4zkQ&index=1

 

 

President's 

letter

  

 

Hi. I'm Kellie your new SSSA President. I know I have some big shoes to follow so I will do my best. I thought I would introduce myself so that you can get to know me a little bit.

 

My family consists of myself, my son Daniel, my husband Don (Daniel's Stepdad), our three dogs and one fish. Daniel was diagnosed a few days before his first bday. We were lucky to get a diagnosis so early. It has been one long and interesting journey. I'm sure all of you can truly understand that statement.

 

I've learned a lot over the years things like how much I truly hate IEPs, how much I truly hate being an investigator of Daniel's medical issues (most of which are not related to Sotos), and how truly inpatient I can be at times. However, I prefer to mostly think about the positives of having a child with SS.

 

Daniel has taught me to not sweat the small stuff. To look at the bigger picture, to laugh when things get bleakest just to name a few things. I have also gained the most supportive and best friends a woman could ever have. The community of parents who have children with special needs is truly amazing and very supportive.

 

The SSSA has given me so much that I want to give more back to its' members. It would be impossible to give back everything that the SSSA's members have given me but I intend to do my best to repay the debt.

 

Thank you all for the opportunity to serve you as your new President.

 

Kellie

 

kellie   

Daniel, Kellie, Don and their dogs

 

 

 

 

Back to School
helpful websites

   
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Wright's Law
Parents, educators, advocates, and attorneys come to Wrightslaw
for accurate, reliable information about special education law, education law, and advocacy for children with disabilities. 

Begin your search in the Advocacy Libraries and Law Libraries. You will find thousands of articles, cases, and resources about dozens of topics:

 

 

Newsletter: Subscribe to the free, weekly 

Special Ed Advocate

http://www.wrightslaw.com 

 

 

24th Anniversary ADA Toolkit

The Southeast Americans with Disabilities Act (ADA) Center has released the latest version of its ADA Anniversary Tool Kit for the 24th anniversary of the ADA on July 26. Available at adaanniversary.org/toolkit, the updated tool kit includes information about the background and history of the ADA, statistics, case law updates, and more.  

 

 

 

Walt Disney World
corner


   

Touring Disney World with a 

child/teen/adult with a Disability


During this past year, in a highly controversial move, The Walt Disney World in Florida and Disneyland in California changed guest access to disability services at both parks. Previously called the Guest Assistance Pass it is now the Disability Access Service Card (DAS).

As a family with a child with a intellectual disability (Sotos) and frequent (2-3X/year) visitors to Disney World we were used to the freedom that the Guest Assistant card afforded us when we visited the theme parks and were concerned with this new change.

It was with some trepidation that we approached the Guest Relations center at Animal Kingdom Park last October to obtain this new pass.

This was our experience:

  1. Animal Kingdom tends to be the least crowded so we felt that this was a good spot to obtain the pass.

  2. We went through the turnstiles (use the Guest Relations center INSIDE each theme park as opposed to the center outside the turnstiles - much less busy!) and immediately to our left is the Guest Relations center.

  3. With a very minimal wait, we approached the Cast Member (Disney Employee) behind the desk. (Make sure your Sotos child/teen/adult is with you.)

  4. She asked the nature of 14 year-old Jacob's disability but did not ask for specifics. (You DO NOT need a doctor's note to obtain a pass for your child. Legally, they are not allowed to ask for proof of a disability.)

  5. We told her that Jacob has an intellectual disability and has difficulty waiting in long lines and is prone to meltdowns due to sensory overload. Sometimes if you say that your Sotos child's needs are similar to autism - people seem to understand that!

  6. She asked us the dates of our vacation and how many people were in our traveling party. Then, she took Jacob's picture, printed out a pass noting our traveling dates and the number in our party.

  7. The CM (cast member/employee) assured us that the DAS card was going to be accepted at all 4 Disney theme parks for the length of our visit. We did not need to obtain a new one each day or at each park.

  8. She explained that we could approach a CM at the ride or attraction Jacob was most interested in. If the wait was longer than 20 minutes, the CM at the attraction would give us a return time based on the current wait time. For example, if the wait time is 60 minutes, we could return in 55-60 minutes and experience that ride/attraction without having to wait in line.

  9. As soon as a ride/attraction has been experienced, we can obtain a time for another ride/attraction using the DAS.

  10. The DAS can be used in conjunction with Disney's FASTPASS system.


Conclusion: With strategic use of both the DAS and the already existing Disney FASTPASS, we were still able to enjoy our times in the parks. Is this pass as convenient as the Guest Assistance Card it replaced? No, it's not. In the "golden years" of the GAC if Jacob wanted to ride "Dumbo" 10x in a row, he was able to (he never did this, by the way!). Well, those days are a thing of the past and, unfortunately because of the rampant abuse of the GAC, Disney needed to change the way they deliver experiences to Guests with Special Needs.

Please know, however, that while the DAS has replaced the GAC, the magical moments your special needs child/teen/adult can experience at Disney haven't gone away! I've lost track of the number of "pixie-dusted" ways that Jacob has been made to feel special by the Disney characters and CMs at the Disney parks, resorts and restaurants! From an extra hug from Minnie or high-five from Goofy to a special Mickey sticker from a resort front desk employee - Disney goes to "Infinity and Beyond" to making a special needs person's visit filled with magic, wonder and "pixie-dust"!


 

**For our upcoming Disney SSSA conference, we have arranged for a specific date and time that extra Guest Relations staff will be on hand to assist our SSSA conference attendees and families in obtaining the DAS card. Tentatively, this has been scheduled for Thursday, July 9, 2015 in the morning at Animal Kingdom Park. Please, "stay tuned" for further details!**


 


 Orlando Conference for 2015...here's the link to the web site page
 

 

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
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William and his favorite Aunt.

 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.

 

 

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