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Hello my Friends,
I hope this letter finds you all doing well and getting ready for Portland. I look forward to seeing all of you there. I know that our wonderful and hard working Conference Planner (Monique) has lots of great things planned for Portland.
Recently, I had a conversation with a member about some behavior issues that she was experiencing with her child. We talked about the great suggestions that therapists quite often have for us when dealing with our childrens' behaviors. One thing that struck me though is that rarely does anyone have suggestions for parents/caregivers on how to handle our own emotions.
Let's face it none of us are perfect. We quite often have days where we do the exact opposite of what a therapist would suggest we do. You know the drill.....keep calm at all times because our kids become more stressed when we're not calm (most people do) but we still lose it occasionally. We yell, we rant, we cry, and we scream (at least I do from time to time). Then it happens, the inevitable guilt that we feel and the isolation.
No one really talks about the isolation we feel parents. I think that's because most of us put on the "happy/strong" face. We don't want people to know that it isn't perfect. That we're struggling. I think honestly that most people would prefer that we put on the happy face anyway. They don't know what to say. They don't seem to understand that sometimes we just want to be heard. We want to say "it's been a crappy day here in Sotos Land". I've been hit, bit, screamed at, dealt with nothing but meltdowns and that was all before breakfast. They just don't understand.
Many of my close friends have special needs kids. While they understand and can sympathize with me it's still isolating. A lot of their kids have Autism so they don't have to "explain" the behaviors as much. They can say "so and so has Autism" and everyone goes "oh, Ok". You've all seen the blank stare when you say "so and so has Sotos". Sigh.....I'm ashamed to admit that sometimes I'm jealous of that aspect of things. . Let me stress that I am not jealous that their kids have Autism (many of them have lives that are way more difficult that mine) but I'm jealous of that instant recognition on people's faces. I hate feeling that way and I hate to admit it even more. I should be better than that in my mind.
I feel like jealousy and guilt really are useless emotions. They take up way too much time and serve no real purpose. I'm trying to do away with them. It's hard. My advice to anyone that is struggling with feelings that aren't serving them is to let it go. Now, if I can just figure out how to do that life would be wonderful. If any of you have figured that out please let me know.
Sincerely,
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DVD:
A Journey from Diagnosis through Life
created by the SSSA
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Make a tax deductible donation
to the SSSA TODAY!!
Mail to:
SSSA
P.O. Box 4626
Wheaton, IL 60189
THANK YOU |
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Click here to pay SSSA Yearly Dues
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COLLEGE
life
by Owen Eigenberg
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College has been extremely time consuming and what not.
In February, I went to an all day summit on leadership development (the sold summit) where I learned about leadership.
I've also been planing for the panel at the conference.
Owen Eigenberg
UMSL
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Member Story
by Lori Brown-Duncan
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Hannah is 15 and diagnosed with Soto's before the age of 1. She actually was involved in the study that was done in America to confirm the  isolation of the NSD1 involvement. As part of her classic Soto's she has epilepsy, mild cerebral palsy, scoliosis, cognitive delays, and a size 11 men's shoe. Hannah had anterior cranial vault remodeling when she was 2, eye surgery to correct an eye that crossed when she was 4 and had an ASD repair done when she was 5. She has a VNS implanted to help manage her seizures.
Our family lives in Hutto, Texas which is a bedroom community to Austin.
Hannah participates in special Olympics cheerleading, basketball, track, soccer and softball. She is also in speech therapy and recreational therapy so stays very busy.
Although Hannah is an only child she has two Boston Terrier dogs (plus an occasional rescue) that she calls her brother and sister. She even got to name them both: Ace and Abby.
Everyone always comments on her happiness. She is always smiling and so positive. She is in Special Ed classes at school with an aggressive main stream integration, struggles with reading and math skills and struggles socially at times. Since Sotos's children are larger than typical, people seem to think she is older. She looks older but acts younger. Coming into the teen years we continue to learn from her and her genuinely happy disposition and optimistic outlook on everything.
Her favorite pastimes are the ballet, musicals, concerts, movies, puzzles and she still loves Barbies. She is looking forward to the Selena Gomez/DNCE concert in June, has seen Taylor Swift 3 times, Katy Perry twice, Hannah Montana/Miley Cyrus (when she was much younger), Wicked, the Wizard of Oz, and the list goes on and on. Live theater is her favorite pastime so we take her several times a year.
Her memory is amazing and she recalls the script to numerous shows she watches as people typically do with songs. If something is important and I ask her to help me remember then it will be done! She has a tendency to perseverate so I will be reminded several times.
Hannah is a joy and the single most important accomplishment in our lives. She has taught me patience and how to enjoy small and typically overlooked accomplishments in life. I see my friends stress about what car to buy their child, what prom dress to buy, their relationship woes and we pray for seizure free days! Life is different with our special Soto's children but different can be, and is, FANTASTIC!
"Thank you Lori! GO H-A-N-N-A-H !!!!"
~SSSA Family
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To all MEMBERS of the Sotos Syndrome Support Association - we have a new membership module on our web site. If you have paid dues in the past year, you should have received an email the week of March 5 from WordPress/Sotos Syndrome Support Association telling you to set up your own, unique credentials to access our Members Only portion of our web site. Your unique user id is your email address but you must set up your password. The generic userid of "sssa" will no longer be valid.
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Best Hopes, Worst Fears
by Kathie Snow
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In TV-Land every week, risk-taking men and women tackle unpleasant, yucky, and sometimes dangerous situations during reality show "contests." The pay-off? Self-esteem, pride, money, and more. In the Real World, ordinary men, women, boys, and girls also face difficult circumstances on a daily basis-taking a test at school, learning to drive (or holding your breath the first time your child drives alone), getting fired, getting hired, and a variety of other experiences that constitute being a human being in today's world.
In
The Lord of the Rings: The Fellowship of the Rings, Frodo quoted one of his Uncle Bilbo's favorite sayings, "It's a dangerous business going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to." Yes, in the Real World, life is full of fear-but every day, most of us go out our doors and face the risks of daily life. We do this because life is also full of hope and promise, and in many situations, our hopes are realized
because we've faced our fears and taken risks.
In Disability World, however, things are very different.
Click here to read the rest of this article.....
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2016 Conference
Young Adult track
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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.
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Temper Tantrums
by Wendy Walsh
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Temper Tantrums and Meltdowns
Temper tantrums or meltdowns can be very difficult to deal with. Recently I posted a question about this on Facebook because I have been experiencing a lot of this recently. One of the previous articles I wrote was about using children books to help with behavior. Although the books I mentioned are great, I needed some advice on what to do during a tantrum, not before or after. I received so many great responses from friends also living with Sotos. Some of the responses were; consistent consequences such as removing a toy or desired item, no special treatment because of Sotos, having your child count to five backwards while remaining calm, ignoring the behavior, putting up your hand and counting to three, telling your child to go to their room until they can behave and the Least Reinforcing Scenario (LRS) (withhold reaction to negative behavior as to not reinforce it and give a chance for your child to show positive behavior). Here are some key points from a well-written article in the Wallstreet Journal by Shirley Wang:
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Point out other children exhibiting a desired behavior. 'See how nicely that boy is sharing.' Don't add, 'Why can't you?'
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Firmly phrase instructions in terms of what to do, instead of what not to do.
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In case of a temper tantrum, remain calm. Describe the behavior. 'You are pretending you don't hear me when I say it's time to go.
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Praise reasonable reactions, muted tantrums or any efforts at self-control.
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State which behavior is being praised. 'I asked you to pick up the toys, and you did.'
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As much as possible, ignore negative behaviors. Don't communicate desperation or beg.
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Model the behavior you want your child to exhibit.
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Don't give up. Some behaviors can take months for a child to master.
I have put all of this advice into practice over the last few days and noticed a huge difference. I am working to make these habits automatic versus calculated. I am so happy to be able to write and share the information I learned.
Thank you to all who gave me guidance on this topic!
Here is the rest of the article (Thank you so much, Michelle Eastey Mercado!):
References
Shirley S. Wang (November 8, 2011) The Wallstreet Journal, Tantrum Tamer: New Ways Parents Can Stop Bad Behavior
Wendy lives in Seattle, Washington with her husband and three daughters.
Her second daughter is 2 1/2 and has Sotos syndrome
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Orange Bow Knot Rolls
(I make this on special occasions every spring.
It's my mother's recipe)
1� cup milk, scalded
� cup unsalted butter
1/3 cup sugar
1 teaspoon salt
1 tablespoon active yeast
2 eggs, lightly beaten
� cup plus 1 teaspoon fresh squeezed orange juice
2 tablespoons plus 2 teaspoons orange zest
4 cups flour
1 cup powdered sugar
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Combine milk, butter, 1/3 cup sugar and salt. Cool until lukewarm.
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Add yeast and let foam.
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Add eggs, � cup orange juice, 2 tablespoons orange zest and beat thoroughly.
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Add flour until incorporated.
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Let stand for 10 minutes then knead on a lightly floured board.
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Place in greased bowl and let double for two hours.
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Punch down.
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Pinch off 1/3 of dough; roll out into a roll to about � inch thick.
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Cut off strips and tie into knots. Arrange on a baking sheet lined with parchment paper. Let double in size for about two hours.
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Repeat with rest of dough.
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Bake at 400 degrees for 15 minutes or until brown.
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For the topping: Combine 1 teaspoon orange juice, 2 teaspoons of orange zest and powdered sugar. Whisk until desired consistency (you may need to add more orange juice).
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Dip the top of the rolls in the topping mixture.
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Portland - SSSA Conference 2016
Golf - Camas Meadows
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There are 12 spots for golf on Friday July 8th
Camas Meadows Golf Course
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
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Portland - SSSA Conference 2016
conference registration is OPEN
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Conference Overview
Learn, Network and Bond!
The Sotos Syndrome Support Association holds a conference one weekend every summer. Activities take place from Friday afternoon through Sunday afternoon.
Families and professionals come from all over the world to learn, network and bond with one another. We combine a program of speakers with social events for the whole family to educate and inspire families on their journey with Sotos Syndrome.
Registration and Child/Young Adult Activities fees range from $135 - $155 per person.
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