Sotos Syndrome Support Association


SSSA NOTES

May 2014

 

 
In This Issue
Remembering Ed
Moms have super powers
Doctor Appointments at the conference
President's letter
Amanda's Family story
2014 Arkansas conference
Travel tips
Order DVD/Handbook

 

 

 

remembering 
Ed St. Clair
by Joanne Weick

   

    

I met the St. Clairs at my very first SSSA Annual Conference in 1994 when my daughter, Kelsey was just 3 years old. Liliane was such a soft-spoken, kind woman.  Ed was a larger-than-life man with a great sense of humor and a phenomenal way with words.  Their son, Andy, was a young teenager.  It was amazing back then - before the internet - you could meet up with another family once a year for a weekend and just pick up your friendship right where you had left off the year before.  

Lillian and Ed were both very supportive of our group when we were a young organization.  Liliane answered our Toll Free Phone line for years, talking to and supporting numerous families in the 1990's.  Ed was on our board of directors and then took over as President in the late 1990's.  They attended just about every conference until Liliane was lost to cancer in 2008.  After that, Ed and Andy continued to come to reconnect with old friends.  
  
For the past two years Ed's health had been declining and with his passing last month a little part of our organization's "heart" has been lost.  Us old-veteran families will always remember him and Liliane and miss them dearly, but the SSSA will continue on, thanks in large part to all of their hard work, determination and support.  
They will forever be with us and part of our Sotos-Family. 
    

 

 

 

  

15 superpowers of 

special needs moms

by Ellen Seidman

 

       

 

1. Extreme energy to tend to your child's physical and emotional needs, while mostly ignoring your own. 

 

2. A sixth sense for knowing when something isn't right with your child. 

 

3. Able to leap over tall piles of clutter in a single bound. Who has time to organize? 

 

4. Supreme tenacity for getting your kid the treatments he needs-and deserves-whether it's from the Early Intervention team or the IEP peoples. 

 

5. Bionic patience for handling your child's obsession with telephone poles/Thomas the Tank/Lighting McQueen/flags/plungers/Xbox/purple/vacuum cleaners/sprinklers/box tops/whatever.

6. Boundless endurance for dealing with insurance company reps. (Press "5" if you spend an ungodly portion of your life chasing down claims.)

 

7. Super-human flexibility for rethinking plans when your outing to the restaurant, play, bounce house or wherever isn't what your child had in mind or, rather, he hates it. 

 

8. X-ray vision for peering deep into people's psyches and knowing whether or not they are comfortable around your child-then doing your best to help them see the child behind the disability. 

 

9. Able to morph into various people at any given time: Therapist! Teacher! Nurse! Cook! Coach! Cheerleader! Secretary! Chauffeur! Personal shopper! Ball buster! Boo-boo kisser! 

 

10. ESP for knowing exactly what your child is communicating, even if he can't say a word. 

 

11. Amazing fortitude for putting on your pleasant face at the mall, the park or the party when other kids are doing their typical kids thing and you feel so alone.

 

12. An uncanny ability to soothe your child when he's having a meltdown in Aisle 8....

 

13...and strength of steel to deal when your child doesn't respond and it feels like the world is glaring at you. 

 

14. Force-field generation for blocking out well-meaning but clueless relatives ("Oh, nothing's wrong! You worry too much. She'll be fine!")

15. Awe-inspiring resilience to pick yourself up after you cry in the shower or car/freak out on your husband/go ballistic on the insurance rep/have an OMG-how-am-I-gonna-do-it-all panic attack/join your child's meltdown in Aisle 8-and keep right on doing all that you do.  

 

 

Republished with permission. 
This post originally appeared on Love That Max, a blog about kids with special needs 
who kick butt. Check it out!
image: Shutterstock
    

 

 

 

SSSA CONFERENCE
doctor consultations

   

Every family attending the conference is offered a private consultation with one of the expert doctors. There is no additional charge for the appointment.

dr s holding lucy samuelson  Dr. Bradley Schaefer

in center

 

When Is The Appointment?

Families attending the conference for their first time will have their appointment on Sunday afternoon between 1:00 PM and 5:00 PM.
Returning families will have their appointment on Friday afternoon between 1:00 PM and 5:00 PM.  Appointments are 20 minutes long. We will e-mail your exact appointment time after we receive your registration forms.  If you have travel constraints (e.g. you have to catch a plane), just include a note with your registration form and we'll do our best to accommodate your needs.

What Happens At The Appointment?
The consultations are non-invasive. The doctor may measure your child's head circumference and height and take a photo of your child. You and the doctor will review your child's medical and developmental history and discuss any questions and concerns you may have. The doctor will focus on the items that are most important to you.

You can still have an appointment even if you don't bring your child with Sotos syndrome to the conference.

 

Dr. Trevor Cole 

 

What To Bring

If this is your first appointment, it is helpful to bring the following items. Don't worry if you don't have all of them. The doctors can still provide lots of useful advice just by meeting with your child and talking with you.

  • Photos at birth, 1, 3, 6 and 9 months and 1, 2 and 3 years of age
  • Photos of parents, grand-parents and siblings
  • Growth charts for head circumference and height
  • Results from previous tests such as genetic testing, blood tests, bone age scans
  • History of medical and developmental issues
  • Any available MRI films, particularly of the head. The actual films or CD of the scans are needed, not just the written reports, since Dr. Schaefer looks for very subtle features that other people may have missed. The hospital should lend these to you at no charge.
Disclaimer

These are not official medical visits. The expert doctors can not practice medicine in locations where they are not licensed. These appointments are consultations to answer questions, not to make official diagnoses or recommendations.


 

 


Tell Us 
your story

   

  

Find Support
Give Support
Learn Something
Teach Something

GET INVOLVED!

Send us your story about your experience for inclusion in the SSSA Notes.
 
Send to:

No access to email? 

Send submissions to:

SSSA

Newsletter Submissions

PO Box 4626

Wheaton, IL

60189


Don't forget to include photos!

 

THANK YOU

to all those who have 

sent in stories, 

article ideas 

and especially..... 

PHOTOS.

Keep Sending them in! 

 

 

 

 

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!!

 
 

  

 
visit us on Facebook      click here          

 

 

President's 

letter

  

 

 

Sometimes there are people that come into your life that make an immediate impact, that you feel you have known forever, you don't need to see these people very often to pick up where you left off and you simply smile when you think of them.

The SSSA lost one of our "founding fathers" on April 17th as Lt. Colonel Ed St. Clair lost his earthly battle but was rejoined with his loving wife, Lillianne, in God's kingdom.

He was a fantastic advocate for his son, Andrew, and a role model for all parents with children who had Sotos syndrome. 

He was always encouraging but HONEST...meaning it wasn't always what I wanted to hear! Each conference I said good-bye to Ed wondering if I would see him again as I had watched his health deteriorate over the years. A week before his death Ed and I discussed this years' conference in Little Rock, "I'm going into the hospital for surgery next week...just a few heart issues...but I will have plenty of time to recuperate and will see you in Little Rock". 

Well, Ed, we won't see you this year but your presence at the SSSA conference will be felt this year and the years to come! 

 

The summer conference Little Rock, Arkansas is just two months away. If you haven't yet registered please go to the website and take a look at the activities in Little Rock. In addition to the annual consultations with Dr. Schaefer or Dr. Cole, this year we are offering a speech consult and an auditory processing consult. These are FREE to attendees! The Friday night reception, dinner, silent auction and "surprise" entertainment not yet experienced at a SSSA conference is always a fun and memorable evening!!!

Hope to see you in Little Rock! 

~Monica

Megan and Monica 

 

 

 

 

 

Amanda's Family

by Amanda Robison
Aurora, Colorado

   

 

Our family includes my wonderful spouse of 18 years, Brian, my oldest daughter, Emilee 16, and my our daughter, Mae 13. We are VERY new to the Sotos world but not new to the challenges that go with it. Mae was only diagnosed last week. However, I knew something was different within weeks after her birth. Mae's story reads like the medical description of Sotos syndrome. Jaundice at birth, delayed milestones, genetic counseling found nothing, started seeing a neurologist at 3 months who was very concerned with her head shape and called her a floppy baby. Mae started physical therapy at 4 months and occupational therapy at 6 months. She saw an eye doctor at 1 for strabismus with surgery at 18 months. Speech therapy began at 2. Mae started having seizures at 2 and a half (clonic-tonic, myoclonic and albescence). We switched neurologist and had way too many test looking for a focal point. She has had 5 MRI's (going on 6 for a Chairi malformation), CAT scan, SPECT scan.  You name it, we probably did it. Mae went through child-find into preschool then entered Kindergarten with an IEP. And.....here we are. Through all our doctors and searching, we JUST got the diagnosis of Sotos syndrome. Now we head down this path. We just found out she has scoliosis and we still have things to check on, but, her seizures have been under control for 9 and a half years (yay!). Mae is now in seventh grade. She attends a regular Middle school but is in a special education classroom, OT and PT just keep "an eye on her" now. She still receives speech 3 times a week. She swims like a fish and loves music and dancing. Mae learned to ride a bike last year. She adores her big sister. She is a funny, loving sweet girl, who can talk your ear off if you let her. We are so happy to have the resources we have found on SSSA and look forward to all of your guidance and knowledge!

 

Mae

 

 

 

2014 CONFERENCE
registration is open

   

    

Check out the updated information 
on the web site

 

The Conference Registration link  is OPEN
 

 

Learn, network, bond!

 

 

 

 

Room for One More
by Kodey Toney


   

My wife and I decided to take a trip to Kansas City this weekend to visit with family and catch a Royals baseball game. I'm a die-hard fan, and have been since my days of growing up in KC as a child, so I decided it would be a good idea to introduce my kids to the major leagues with a visit. When we arrived at the hotel that we would call home for a couple nights my wife asked me to do something that sparked my interest for this week's article. She said, "See if they can put us on the first floor. You know how the boys can be; especially Konner." 

Here are a few tips, and a story or two.

When we arrived at the hotel I asked the man at the front counter if he had something on the first floor, but he was obviously new and didn't know if they did, or how to change things if they did. I decided to just go with the third-floor room he gave us and hope that the people on the second floor were forgiving.

You see, my kids are typical boys. They like to roughhouse, wrestle, jump off of things, and can get pretty loud. We try to control that, but boys will be boys.

Konner, however, is a different story alone. He has things that can make him an undesirable housemate at times. Besides the impulsive screaming and potential meltdowns Konner seems to have feet that weigh 50 pounds each. Though he doesn't really stomp he still has the loudest walk in the world...or at least to me. This is amplified with the fact that he has an impulsive stomp, almost stutter-step, when his medicine has worn off. It's almost like a nervous tick. This usually happens close to bedtime, which is awesome for all those in rooms around us.

So the first tip is just what I talked about earlier. If you can, request a first-floor room. This eliminates the loud stomping for the people below you.

Runningforautism.com has some great tips that I'm going to share.

Most hotels these days have pictures of the rooms on the website, or at least a model room which, if you've been in one room they are pretty much the same. It's a good idea to print off pictures, or at least pull up the page, and look at them together. It's always a good idea to talk ahead of time about the trip as well and what they might expect.

Pack things that are familiar to your child. Any familiarity is a good idea. Toys, movies, iPads, blankets, pillows, or anything that can keep their mind off of the fact that they are in a different space will be good.

Tell the manager about your child's disability. This may be a good idea if you suspect things will get out of hand. You would be surprised what they will do to accommodate you if you let them know. We were at a hotel once and had a person complain about the noise of the boys stomping in late afternoon. We didn't expect anyone to be in their rooms at that time, and we had been at an amusement park all day. The boys were rambunctious and needed to rest for a while. When the front desk contacted us my wife explained that we were sorry and that we would do all we could to keep the boys quiet. She then explained that Konner has autism and it was hard at times. The man working explained that he understood and would try to help in any way he could.

Allow your child to explore the hotel room. Konner has to check out every place we go to. It can take him a while to just make his way around a room to try and get comfortable. Just let them get it out of their system. If you don't let them investigate it can make things worse in the long run.

Maintain whatever semblance of routine that is possible. This means, if you usually take a bath at 8 p.m. then try to do that at the same time in the hotel. If they go to bed afterward then try to do that. Routines are what drive children who have a disability most of the time.

Accept that some things may not go as planned. This is the one I have the most problem with. I want things to go as smoothly as possible and when they don't I feel like I've failed to do my job as a parent, which is to keep as much peace and structure as possible. I forget that this is not possible all the time and that things are going to go wrong.

Nothing is perfect, but these tips might help you to have a little better stay next time you are out of town.

   

Republished with permission. 
This post originally appeared on Pervasive Parenting 

 

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




Peter Costello and William Hefner
Oklahoma City, OK
These athletes met at an 
area Special Olympics Game in April.

 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.

 
 

Donate to the SSSA every time you search the Internet or shop online at select sites!!!

 

Search the web with Yahoo-powered GoodSearch.com and they'll donate a penny to the Sotos Syndrome Support Association when you designate the SSSA as your cause!