SSSA Notes

January 2016

Hello my Friends,

I trust you all survived the craziness of the holiday season. Daniel had a great holiday and school vacation. He typically doesn't deal well with the lack of schedule but this time he handled it pretty well. Just a few bumps in the road. Signs of maturity? I sure hope so.

I don't typically make resolutions but this year I have thought that I want to changes. I want to start hearing from more of you about what kinds of things you would like to see me write about in the Presidents letter. It can be difficult to come up with ideas every month so I would appreciate some help.

Since I'm still on my own to come up with a topic this time around I thought I would cover the voracious appetite of a teenager with Sotos Syndrome. Something I know all of you can relate to on some level.

Daniel is literally eating us out of house and home right now. I didn't know that a person could eat a whole bag of shredded cheese in one sitting at 3:00 am. Seriously???? Not to mention eating four of five granola bars in one sitting as well. He wakes up and says he's hungry so he gets up and eats, and eats, and eats. I think we're going to have to start locking food up at night. Lol. I worry that he's going to wind up as big as a house. His Dr. tells me thought that his BMI is actually going down since he's now taller than I am.

I have noticed lately that he's gotten more into exercising as well. I'm an avid gym goer (five to six days a week) and in the past few weeks he's been going with me. Ever try running on a treadmill for two miles with a child who keeps interrupting you every two minutes for instructions on how to work a piece of equipment? Then gets mad at you when you try and show him how to work the machine? It's always an adventure with them isn't it?. Lol. I have to admit I do enjoy taking him and the staff at the gym really likes him as well. He will clean off the tops of the trash bins with cleaner. Even at the gym OCD doesn't take a break.

He is finally realizing his dream of joining a basketball league this winter as well. Their is a league here starting up for special needs kids. Last night he attended a informational meeting about it with his Dad and discovered that he knows literally half the players. He's so excited. I think it will be a great experience for him.

I'm hoping that with all the extra activities then perhaps the voracious appetite won't lead to excessive amounts of weight gain. I know that Dr. Cole frequently mentions in his lectures that this can be a problem for a lot of our kids as they grow into adulthood. I struggle with my weight and don't wish that on anyone.

I'm curious to know what all of you are doing to combat the voracious appetite?

Sincerely,

Kellie Penny

SSSA President

COLLEGE

life

by Owen Eigenberg

Advice from older people with Sotos syndrome to the younger generation:

"When living on your own or at home with your mom and dad or legal guardians always remember one thing: always be happy and courteous to your loved ones they won't be around forever."

Owen Eigenberg

UMSL

In This Issue

SSSA

Video Corner

UCLA Kid Captain Leonard Evans

You think you know basketball? If you're hanging out with Leonard Evans, you should think again. Leonard is an avid basketball fan from across all spectrums, from pick-up games to the NBA. Despite being born with Sotos syndrome, he plays basketball with regular kids and "continues to push the envelope for special needs kids," says his mom.

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Hello from "Down Under" member story

by Lisa Rynne

Hello. Our family have just joined. We are living in Perth, Australia and our beautiful daughter Lettie has been confirmed as having Sotos Syndrome at the age of 16 months. She's been under the guidance of an early intervention team at the Princess Margaret Hospital for Children since April 2015 and is soon going to be moving to a community based organization. The hospital has recommended one that originally specialized in cerebral palsy.

She's come along so far since April.

Lettie attends day care 3 days a week and thrives on the attention and other children. We hope that the interaction encourages her to start pulling herself up and eventually standing and walking. At the moment she's a lightning speed bum shuffler!

She's extremely social and is always happy. With her infectious smile it's not hard to understand why people love her. We are super proud of our little girl and how well she has dealt with the copious amounts of infections, hospitalization and general prodding and poking.

We look forward to hearing from a everyone and maybe eventually attending a conference one day to meet you all.

"Welcome Lisa and family. We look forward to someday seeing you at a conference."

~SSSA Family

2016 Conference

Young Adult track

2016 Portland Annual Conference July 8 - 10

Opportunity for Adults with Sotos or Similar Syndromes

This year at the Portland Conference we will be initiating a new track for adults with Sotos and similar syndromes. Participants must be 18 years or older. The track will run concurrent with the presentations on Saturday from approximately 9 am - 4 pm. This will be offered for individuals too old for child care but not interested in attending the longer, intense presentations traditionally offered. The program will be educational, challenging and fun. Experts will present on Sotos and other topics but the presentations will be shorter and geared for this audience.

Part of the program will allow for participants to present topics of interest to the group. The presentations should be 7 minutes long. Your target audience will be other adults just like you. Suggested topics could be: favorite hobbies, cooking, recipes, scouting, crafting, driving a car, working, organizational skills...the possibilities are endless. You should prepare and practice your presentation at home. Bring props, items to share or handouts. It is an opportunity to hone your public speaking skills and share your interests with your peers.

The third part of the day will be purely social. There will be time available to socialize, mingle and just hang-out. An off-site activity may be included.

If you are an adult with Sotos or a similar syndrome and would like to prepare a 7 minute demonstration or presentation please contact me JoanneWeick59@gmail.com. Have an idea of what your topic will be and provide your vital information so you can be included in the day's program.

Reading Books

by Wendy Walsh

Children books are a good way to explain a difficult and complicated topic. For example, if there are behavior issues such as hitting, kicking, yelling, tantrums or not taking turns; picture books may help. According to Ohgi, Loo & Mizuike (2010), "...greater frontal lobe activation in children when they were engaged in a picture book reading task with their mothers, as opposed to passive viewing of a videotape in which the story was read to them." Also, picture books may be vital in changing behavior. Books may influence a child's preference and communicate valuable information in a creative way. Some great books on behavior changes are the series by Elizabeth Verdick and Little Monkey Calms Downby Michael Dahl. There are many books on the market which address the same concept, but the above mentioned are wonderful. Books may also positively influence your child's preferences. For example, one study showed that if picture books were displayed and the child was interactive with the story, this could positively impact behavior or preferences (de Droog, Buijzen & Valkenburg (2014).

References

de Droog SM, Buijzen M, Valkenburg PM. Appetite. (2014) Feb;73:73-80.

Ohgi S, Loo KK, Mizuike C. (2010). Acta Paediatr.

Frontal brain activation in young children during picture book reading with their mothers. Feb;99(2):225-9

Wendy lives in Seattle, Washington with her husband and three daughters.

Her second daughter is 2 1/2 and has Sotos syndrome

Recipe

corner

Turkey and Steak Chili

(My mom makes this every year during football season)

1 onion, chopped

2-3 celery ribs, chopped

1 red pepper, chopped

1 green pepper, chopped

1-2 carrots, chopped

2-3 garlic cloves, chopped

1 (28 ounce) can chopped tomatoes

1 large can tomatoes puree'

1 can kidney beans

1 can black beans

1 can navy beans

1 bottle beer

2 cups chicken broth

2 pounds ground turkey breast

1-2 sirloin steaks chopped in squares depending on size

1 cup corn

2-4 tablespoons chili powder

1-2 tablespoons cumin powder

1 tablespoon dried oregano

1 teaspoon or dash of cayenne pepper (to taste)

Salt and pepper to taste

1) Saut�' onion, add turkey, brown then remove from pan.

2) Saut�' steak then add the rest of the vegetables along with the turkey mixture.
3) Add tomatoes, puree', beer, broth, and spices. simmer a while on low
4) Add beans and corn, adjust seasonings to taste. Simmer on low to meld flavors.

recipe from Wendy Walsh

Portland - SSSA Conference 2016

start panning.....

Fun ideas to get you started in town Portland....

The 20 Best things to do in Portland

time out.com

"Keep Portland Weird" is a popular slogan that appears on bumper stickers, signs, and public buildings throughout Portland, Oregon and its surrounding metro area. It originated from the "Keep Austin Weird" slogan and was originally intended to promote local businesses, though it has since evolved into an all-encompassing slogan that secondarily promotes individuality, expressionism, local art, as well as atypical lifestyle choices and leisure activities. (1) The slogan frequently inspires articles and debate that attempt to quantify the exact level to which Portland is considered weird, unusual or eccentric.

(1)"Keep Portland Weird . Retrieved August 23, 2011.