SSSA Notes
December 2015

Hello Everyone,

It's hard to believe that the New Year is upon us. 2015 has flown by. I find myself wishing the craziness of this holiday season would just end. Yesterday, after running about my 15th errand I kind of lost it. I found myself being very irritable with Daniel. I decided that I had to just take a day off so I went on strike today. No errands no nothing. The strike is over tomorrow but at least for today I don't feel so "bah humbug".

I was reminded today of the Christmas spirit by Daniel. This is the first year that he's actually been talking about buying others gifts. He chose to buy my husband a lunch box for work. It's exactly what my husband wants and it shows that Daniel is starting to think more and more of others and what they would like to receive. Usually, he wants to give everyone trash bags. Lol.

His Birthday is in December so he gets quite a bit of presents this time of the year. He received a $50 check in the mail and promptly informed us that he wants to "give" that "$50.00 to us as a Christmas present". We tried to convince him to keep the money but he insisted. We decided to give him his blessing. He has no clue but we will find someway to spend that money on him. It's nice to see how he's becoming even more giving. He truly has a generous heart.

Today his former special ed coordinator (school Mom as she calls herself) took him out to lunch and held a reunion of some of his former teachers. She said he was so "excited to see them". Daniel hasn't been a student of this school in two years and yet these teachers and the school secretary still wanted to see him.

This year we heard of some friends who were in a very bad situation. Car broke down, lights about to be turned off, no way to get the kids presents for Christmas., Dad in the hospital, and not a lot of food. These are people who constantly step up and help others. They spend their lives volunteering to help special needs kids and when I told Daniel what was going on. His response was to say "We have to help them". So, we bought them some food. I nominated them to be a family for QDR's wish list (a local radio station that adopts families for Christmas and asks their listeners to help). They were accepted and now things are turning around. They have a new used car, electric bill has been paid, there is food in the house, and the kids will have presents.

Tomorrow Daniel and I will go to the radio station to pick up the rest of their presents. Daniel doesn't know it yet but I've arranged for him to meet "the Morning Crew". This is his absolute favorite radio station and he loves the "Morning Crew" so I know he's going to be beside himself. I took a chance and asked if we could meet them because I felt that all of his kindness towards others should be rewarded.

This has been a hard year for us as a family. Daniel's had lots of appointments and medical issues. A very dear friend was killed in a snowmobile accident. The weather has caused Don's work hours to go down quite a bit which makes things difficult financially. I was dealing with the holiday blues but Daniel's generous soul has reminded me of what it's all about and put me back in the Christmas spirit. Thanks for being my teacher, Daniel.

Happy New Year!!!

Kellie


College
life
by Owen Eigenberg


  
"I had the opportunity to meet and talk with speaker temple grandin she gave me excellent advice for my career path which is film making"

"To just do it."


Owen Eigenberg
UMSL 
In This Issue

Local
celebrity life
 Daniel with Marty "the one man party" from QDR in Raleigh




Here is the picture from when he got to meet the local radio DJ. We were expecting just to get a meet and greet but he took us on a tour and allowed us to be on in the studio while they were on the air. Daniel was very excited!

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 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 
Have an idea of what your topic will be and provide your vital information so you can be included in the day's program.  



 "Santa"
 member story
 by Wendy Walsh

This year I took my daughters to see Santa at the local mall. We were so excited and had planned this event for a month (I even made reservations). When we arrived, the girls were so excited with their Santa letters and Christmas dresses. When we got there my 11-month old was afraid of Santa and so was my daughter with Sotos who is 2 (almost 3). After we met with Santa we went to a local holiday shop that had many ornaments and holiday décor. My mom was with me and she was helping with the kids. I had my youngest in a carrier (ERGObaby) and the two older girls I let look around the store with supervision of both myself and my mom. 
My 2-year-old accidentally broke two ornaments because she ran into one and dropped the other. The whole incident was an accident, but a few onlookers were not pleased. When I became a mother I was more aware of how motherhood can be challenging. This awareness turned into more tolerance and compassion toward other mothers. 
My first reaction to this response to these women was to get angry and let that incident take over the whole experience of the day. But rather than focusing on what happened, I turned it into a positive. After the incident, this nice young man who was working there really helped me. He supported me and told me to not worry about paying for the ornaments or clean up. I was so impressed with his compassion and understanding. When I arrived home I called the store manager to compliment his reaction to the situation. I explained to the store manager briefly what happened and that I have a 2-year-old daughter I don't take out much because she frustrates easily. The store manager thanked me for calling and told me she was going to reach out to the employee who helped me. She also told me she was going to share this story with the entire department as an inspiration on how to be tolerant, kind and understanding toward others. 
When the girls and I got home, we talked about how the situation made them feel. My oldest and very wise daughter, who is 4, seemed to have said it best, "mommy, that was sad. Those ladies were sad. But I want to sit by the tree and read books with you. I love you. You're my best mommy!" The greatest gift of all is to have people in our lives who care, support and accept us for who we are. So to conclude our day, my girls and I sat by our tree, read Christmas books and had a cozy evening laughing and having fun. 

Photo courtesy of "Baby's First Christmas sponsored by Oklahoma Family Network 2015
 
 Inclusion
 beyond the classroom
 

and After School

from the Inclusion Lab

Here at the Inclusion Lab, we talk a lot about ensuring the full participation of all learners during classtime. But what about noninstructional times like lunch, recess, and extracurricular activities? These provide students with rich opportunities for developing friendships and honing social skills-but too often, kids with disabilities don't get the supports they need to participate fully.
Today I'm sharing 10 tips from books by seven of our expert authors. Try these in your school, and boost student inclusion and participation in activities that happen between and after their classes.





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 Managing 
 stress
 by Wendy Walsh

Caring for someone with special needs can be stressful. According toCaicedo (2014), "there are 11.2 million children with special health care needs in the United States or one in five households caring for a special needs child." Also, according to Colet (2013), "behavioral problems, psychological disorders and emotional needs of children were factors commonly associated with high levels of stress. Satisfaction with social support, satisfaction with the parental role, a good family rapport, an emotional bond between father/mother and child, spousal support and the sense of being an active participation in social life help reduce stress levels." Personally, I am still learning, especially as every new transition occurs and change to the routine is introduced. But how I try to deal with stress is fairly consistent: weekly date night with my husband, laughing (watching a funny movie or show), talking to someone I trust about my feelings, joining a social network such as Facebook or mother's group, walking or working out when I can, trying to not be so hard on myself (aiming for "good enough" not "perfect"), open to ideas on coping strategies, knowing when to ask for help and maintaining a hobby I enjoy (like writing for the SSSA). I usually sometimes will eat one too many cookies or grab that extra bowl of ice cream when I'm stressed. I have been working on reducing my overeating by using these steps (I actually have this hanging on my fridge): Tips on How to Stop Emotional Eating. Believe it or not, just being aware of what I was doing in reaction to stress was half the battle.

Maybe the whole idea or concept around stress management is to be aware of when you hit your limit, recognize your reaction and reach out for help. Perhaps someone you trust with your feelings may help decipher your stressors and assist in navigating through your own personal roadmap to managing them. Sometimes when you are busy raising a family, taking a moment to yourself is difficult. But as someone very wise told me once, "happy mommy/daddy/caregiver, happy family." I don't always succeed at managing stress perfectly (who's perfect, anyway?), but if I do most of the time, I feel I'm doing alright.

Here are some great tips here on how to combat stress: Tips for Families Living with Special Needs

References
Families with special needs children: family health, functioning, and care burden Nov-Dec;20(6):398-407.
[Parental stress in families of children with cerebral palsy: an integrative review] Jun;18(6):1705-15.










Wendy lives in Seattle, Washington with her husband and three daughters. 
Her second daughter is 2 1/2 and has Sotos syndrome

 Recipe
 corner 





Gingerbread
 (This recipe is my Great Grandmother's. So simple and perfect for the holidays)

1/3 cup canola oil
1 cup sugar
3 eggs
½ cup molasses
1 ¼ teaspoon cinnamon
½ teaspoon ginger
½ teaspoon nutmeg
½ teaspoon cloves
¼ teaspoon salt
1 cup cold water
2 ½ cups flour
1 teaspoon baking powder
1 teaspoon baking soda

  1. Cream oil and sugar until blended.
  2. Add eggs, molasses, spices, salt, water, flour, baking powder and baking soda.
  3. Place in buttered loaf pan.
  4. Bake at 350 degrees for one hour or until toothpick comes out clean.
  5. Serve with topped with powdered sugar.
 
recipe from Wendy Walsh

 Portland - SSSA Conference 2016
 start panning.....

       Fun ideas to get you started in town 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.



 


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