SSSA Notes

June 2016

Hello Everyone,

This has been a couple of fun weeks.....NOT. Daniel and I were both sick last week. I recovered quickly him not so much. This week he had seven appointments. GI, Ortho, PT, ST, Dentist, Developmental Ped, and Pediatrician. Fortunately, we got good news on most fronts.

His OCD is really going strong now. I'm almost ready to call Uncle. His chewing is to the point where he's going to have a "fixed" appliance put on his teeth to keep him from chewing his fingers anymore. It's to the point where they are almost always infected and the Drs are worried about him becoming antibiotic resistance. Of course the insurance won't cover it so it's going to be a major expense. However, it will be worth it if it stops him.

A couple of weeks ago I was complaining because he's starting to line things up on the conveyor belts at the grocery store and he freaks if they aren't lined up just so. Thank God the last time it happened my friend was the cashier. I can't imagine the reaction of the person behind me. I think now that I shouldn't have been complaining. I should have been grateful. That isn't going to harm him.

I'm going to try a new supplement for the picking and chewing. Well, it's new to me. I had to order it so now I'm playing the waiting game. I'll let you all know how it's going.

Never a dull moment in Daniel's world or yours I'm sure. Email me and tell me how your days are going. I love to hear from you.

Kellie

SSSA President

president@sotossyndrome.org

COLLEGE

life

by Owen Eigenberg

When either moving in or out of the dorms I have some advice: Only bring what you need to college and Do not bring more in... It will come back and nip you in the butt.

Owen Eigenberg

UMSL

In This Issue

Notice: SSSA Board Meeting

Daily Life

Advice to my past self

Recipe Corner

Conference GOLF!

Portland - Young Aduts

Portland Speaker Sneak Peek

Portland 2016!

DVD:

A Journey from Diagnosis through Life

created by the SSSA

$5 + shipping

Order info

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THANK YOU

Member Story

by Miss Nicole Stampfli

HI MY NAME IS NICOLE. I AM 29 YEARS OLD.

I WAS BORN IN 1987. I HAVE SOTOS. I WAS DIAGNOSED WITH SCHIZOPHRENIA 15 YEARS AGO AFTER MY GRANDFATHER AND GREAT GRANDMA PASSED AWAY. MY FATHER ALSO PASSED AWAY IN A CAR ACCIDENT.

MY GRANDMOTHER HAS RAISED ME SINCE BIRTH. I LIVE AT HOME WITH MY GRAMMA AND MY DOG, CHLOE.

I LIVE IN LYNBROOK, NY. I WENT TO OCEANSIDE HIGH SCHOOL AND GRADUATED IN 2007.

I HAD THE BEST TEACHER IN THE WORLD, HER NAME IS PENNY ELLIS.

I WOULD LOVE TO MEET SOME FRIENDS WHO ALSO HAVE SOTOS.

ILOVE MUSIC AND DANCING. I HAVE A SPECIAL NICKNAME, IT'S "CRUSH GIRL". GUESS WHY? LOL.

IN THE SUMMER I GO TO CAMP LOYALTOWN FOR 2 WEEKS. I CAN'T WAIT! MY BEST FRIENDS, SINCE ELEMENTARY SCHOOL, ALSO GO AND WE HAVE OUR OWN CABIN.

I ALSO GO TO A DAY CAMP , CALLED CAMP ANCHOR. IT'S IN LIDO BEACH.

I HAVE A FEW STAFF GIRLS WHO COME DURING THE WEEK TO DO COMMUNITY ACTIVITIES AND OTHER FUN THINGS.

I LOVE TO READ , SOMETIMES. AS LONG AS IT'S INTERESTING. MY FAVORITE TYPES OF BOOKS ARE TEEN ROMANCE.

I LOVE PIZZA AND SPAGHETTI AND MY GRAMMA MAKES THE BEST MEATBALLS.

I LOVE TO GO TO PARTIES AND HAVE PARTIES. LAST YEAR, I HAD A LAW AND ORDER SVU BIRTHDAY PARTY. WE ARRESTED THE GUESTS WHEN THEY ARRIVED THEN TOOK THEIR MUG SHOTS.

IT'S WAS FUN!

Thank you for sharing your story Nicole!

~SSSA staff

Notice: SSSA Meeting

Take Notice that the

Annual General Meeting of the Members of

Sotos Syndrome Support Association

will be held at:

Crowne Plaza Hotel & Resorts

11441 NE 2nd Avenue, Portland Oregon 97232

Sunday, July 10, 2016 at 9:00 a.m. local time

PROXY

Daily Living/Life Skills

by Kathie Snow

Maria, the mother of 7-year- old Sophie, was livid about the school's proposed IEP (Individ- ualized Education Plan) for her daughter: Sophie would be in an elementary school Life Skills class with other children aged 6-10, where the students would spend time learning to make beds, fold towels, sort recycling, and other activities (of questionable value). Little time would be focused on reading, math, or other academics.

What, exactly, are Daily Living
Is there a universally-accepted de nition? Similarly, is there a standard "curriculum" (not just "programs" that are sold to school districts)? I've asked these questions of many professionals, teachers, and parents of children and adults with disabilities, and there is no speci c, commonly agreed-upon de nition.

Yet, ensuring that children and/or adults with disabilities "achieve" or "master" Daily Living/Life Skills is high on the list of many parents, teachers, service providers, and others in the disability arena.

CLICK HERE TO READ MORE OF THIS ARTICLE

5 Pieces of Advice I'd Tell My Past Self

the Day We Got the Diagnosis

by Jessica Evans contributor, The Mighty

Growing up, I spent my summers in the woods, making paths with my father on our property. It was fun, exploring and creating trails that would always lead safely home. I had a lot of defining moments on those wooden trails, and I've always envisioned life as one big path where big moments and decisions determined the direction you'd go. But if you had a destination in mind, you'd eventually get there. Pre-motherhood I had my path mapped out. And oh buddy, did I know my destination. I knew where I was going, what I was doing, the kind of wife, mother and career woman I was going to be.

Then I had my daughter. Then we got her diagnosis and that pre-motherhood path I'd mapped out so well bit the dust. Here in front of me was a whole new journey and I had no idea where the destination would be. Click to read on....

Recipe

corner

Blueberry Muffins (Great for busy mornings)

� cup oats

� cup orange juice

1 � cup flour

� cup and 2 teaspoons sugar

1 � tablespoon baking powder

� teaspoon salt

� teaspoon baking soda

� cup canola oil

1 egg, beaten lightly

1 cup fresh blueberries

� teaspoon cinnamon

Dry ingredients: add oats, flour, � cup sugar, baking powder, baking soda and salt. Stir until blended.
Wet ingredients: add juice, oil and egg.
Combine both wet and dry ingredients.
Pour into greased and flowered muffin liners.
Top with a mixture of 2 teaspoons sugar and � teaspoon of cinnamon.

Portland - SSSA Conference 2016

Golf - Camas Meadows

Annual Golf excursion...... Friday July 8^th

Camas Meadows Golf Course

http://www.camasmeadows.com/Golf.asp

7:30am meet at the Course - 8am Tee

$75.00 Includes cart and 18 holes

Indicate when you register that you are interested in playing on 7/8

2016 Conference

Young Adult track

2016 Portland Annual Conference July 8 - 10

Challenge Workshops

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. Individuals must be independent as staff will be on hand to coordinate the program but will not be responsible for supervision.

The program will be educational, challenging and fun. Experts will present on Sotos and other topics but the presentations will be shorter and geared to the audience.

Part of the program will allow for participants to present topics of interest to the group. The presentations should be 7 minutes long. The 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. Presentations should be prepared and practiced. Bring props, items to share or handouts. It is an opportunity to hone public speaking skills and share interests with your peers. Topics already scheduled are Sotos 101, Therapeutic Horseback Riding, Physical Fitness and Comicon.

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.

If you are an adult with Sotos or a similar syndrome and would like to attend, please watch our web site for conference registration starting in March and select the Challenge Workshops option.