SSSA NOTES

December 2014

Wishing you a Happy Holiday

and a joyful New Year!

from the staff at SSSA Notes

Daniel and Santa

2014

In This Issue

New member!

Conference (Disney) planning

United Way helps the SSSA

Order DVD/Handbook

President's letter

SSSA Parent Story

2014 SSSA Conference

Little Rock , AR

Our son Kaoru

new member of the SSSA

Dear members of the SSSA,

Thank you for adding our family to the SSSA, and I appreciate that you sent a pamphlet of the SSSA and many documents about Sotos syndrome. I'm glad to join this association.
My name is Ai Fujiwara, living in Japan with my husband and our baby.
My son, Kaoru, 16-month-old was diagnosed with Sotos syndrome when he was 9-months-old.
He doesn't have a brother and a sister, yet.
He goes to the nursery school happily every weekday. And he gets physical therapy twice a month(his present goal is walking).
His classmates can walk and talk gradually, but he cannot yet.
Everyday, he has challenged various things. And it has increased that he can do little by little. He is our great joy, and we are proud of him.
His latest favorite is playing piano, reading by turning over the pages of his picture books, and to be carried in his parents arms. His big smile is so lovely.

Best wishes for your continued good health, happiness.

Sincerely

Ai Fujiwara

2014 SSSA Conference

Little Rock , AR

Plan Ahead

Travel Links for Disneyworld

Disney tips

or contact Robin Fitch, our TA:

robin@sunnydaystravel.com

443-371-7683

Robin's website isn't active but she is very active! She will respond to your emails or phone calls.

Jake two years ago at Disney

(at the Haunted Mansion ride) in his Halloween costume

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.

2014 SSSA Conference

Little Rock , AR

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.

A Handbook for Families

(Third Edition)

$15 plus shipping

English Spanish

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

Daniel and Mrs. Claus

2014

President's

letter

Hello all,

I hope that this letter finds all of you doing well. I'm sure that most of us are involved in the craziness of the Christmas rush to get things done. I know I am. I have the added celebration of Daniel's Birthday being this month as well. So, I get to throw in an extra party and extra shopping to all of the craziness.

We have a tradition around here where we attend the annual Christmas tree lighting the first Friday of the month in December. It's quite a spectacle. The kids get to hand deliver a letter to Mrs. Claus for her to give to Santa. This year they had a train ride around the park where they hold the Christmas tree lighting. This year as we got off the Conductor said he was on his way to pick up Santa. Daniel and I were walking away when we saw them putting Santa on the train. Daniel who is normally not a shy child all of a sudden was at a loss for words. It was so cute. All he could do was wave and say "hi" Santa. Lol

The next day our tradition continued when we went to a very special meet and greet with Santa. The local ARC chapter hosts a "special needs" party for kids to meet Santa. They really do a great job. They have four different Santa in four different rooms and the kids are able to take their pictures with Santa and say "hi" to him in private room with very little wait time. They also have healthy snacks for the kids and lots for them to do before or after they meet with Santa. They make decorations, ornaments and cookies. They also lower the lighting for the kids so that they aren't over stimulated.

A good time is had by all and if on occasion there is an outburst from one of the children no one cares. It's all good. I highly recommend finding a local group that organizes these events for our kids. It was fantastic.

We have another tradition of Santa sending Daniel a video message from the North Pole. Daniel was waiting with bated breath to see if he made the nice list. He was so excited that he was running around telling the dogs "I made the nice list". I think he was a little worried. Lol If anyone is interested then here is the link. It's free for the standard video. https://www.portablenorthpole.com/?lnksh=1&siteID=UO85MF6im_8-V8N0gxl3d8CkBD8Fj5SJ1g

I would love to hear from all of you what your traditions are for the holiday season. Better yet send pictures. I love to hear about all of your kids as well.

I want to wish all of you a very Merry Christmas, Happy Hanukkah, Kwanza, or a Happy Holiday season. May all of you have a wonderful and safe holiday.

Sincerely,

Kellie Penny

President of the SSSA

president@sotossyndrome.org.

2014 SSSA Conference

Little Rock , AR

Missy's story

by her Dad, Anthony P.

Our daughter Melissa , [ she now prefers to be called Missy ] was born on June 9, 1980. That's right--she's a child no more--she's 34, and has come an incredibly long way after having been diagnosed with Sotos at a very early age. Mainly because our pediatrician, Dr. Elizabeth Ruppert at Medical College of Ohio was schooled under Dr. Juan Sotos at Ohio State university and was able to recognize traits early on. We were fortunate in that regard. I'm sure there are people walking around today that have Sotos but never been diagnosed due to the unknown factor.

Missy went through many of the usual problems-- hydrocephalus, high arched palate, respiratory problems [including asthma] , bad feet, bad teeth, [ just had major mouth surgery for receding gums ] nabismus, strabismus,slight scoliosis, and on....but what I want to share here has to do with her fine motor skills while growing up--or lack there of really.

I will try to be brief, although difficult, but...Missy had a hard time doing things with her fingers and hands. On the bright side, she had [and still has] a phenomenal memory. We had a thought.

There was always music on in our household....we, as parents listened to the stereo constantly, mostly rock n' roll but my wife would have to throw some Barbara Streisand in there too....And our son [five years older than Missy] was an aspiring drummer. Music abound. We had heard about The Suzuki Method of piano teaching for the young. Basically speaking, The Suzuki Method focused on learning by memorization, at first, rather than learning how to read notes, the conventional way. We found a teacher, got Missy involved, and it worked. In so many ways.

She picked it up quickly, and enjoyed it. Her memory skills were a main factor. And she was playing classical pieces like a pro. Of course she started with some easier minuets, but swiftly moved on to some-in my mind-very difficult pieces, like The Gigue, Toccata and many by Bach , Chopin , Mozart, ....and that other guy who's name starts with a "T" that I won't even begin to spell....anyhow--you get the idea. Her manual dexterity improved dramatically and her self-esteem sky rocketed. We all were thrilled. I could go on but.....

My point is, if anyone out there has a child who has Sotos syndrome ....I strongly recommend looking into music-- specifically The Suzuki Method...you just may be pleasantly surprised, as we were. It worked for Missy.

Today Missy is 34 she graduated from high school--a young woman now--she drives her own car to and from her job at a local hospital, and [and we doubted this would ever happen...] she just moved into her own apartment, living on her own. I don't know who is more surprised, Missy or us as parents ! We are very proud of her, and she is proud of herself most of all.

Of course we don't attest all of this to piano, as she has had some great teachers and outside help....and good parents I think....but--- I am sure learning piano, playing in front of people, getting applause and recognition, was a major reason for her growing into the person she is today. She has not "outgrown" Sotos, of course, but, Missy has come a very long way from some very difficult early years.

I implore all parents of a child who has Sotos syndrome ....music could be the answer. You never know until you try.

Good luck to you all, don't give up hope.

Anthony P.

Toledo Ohio

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See you next year!

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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