SSSA Notes
November 2015


Hello Everyone,

I hope all of you are doing well. I want to wish those of you in the U.S. a Happy Thanksgiving. For those of you who don't know, Thanksgiving is a holiday in which we give thanks for those people that are important to us.

I don't talk much about my husband but I would like to share a few things about him. Don isn't Daniel's biological Father. He is Daniel's Stepfather. I've often wondered about men or women who have the courage to marry into a ready made family especially when one of those kids has special needs. I grew up with Stepparents and I know firsthand the positive effect they can have on a child's life. They can offer another strong, nurturing parental unit. I also know what a difficult position they can be placed in especially when they have to have regular contact with the child's other biological parent. In Daniel's case his Father is very involved with his life which is a good thing for Daniel. Not always so much for Don. He has the least amount of say in what goes on in Daniel's life and in the decision making process (my ex and I have joint custody) and yet he's most affected by those decisions. Daniel is with us at least five days a week which means that Don is with Daniel more often and spends a significant amount of his paycheck on caring for Daniel (you all know how big those grocery bills are with their voracious appetites). 

They have an interesting relationship. It's not all a bed of roses between them. Daniel is in a bit of a rebellious streak and in particular rebels against Don. However, he beams the most when Don says he's proud of him and he refers to Don as his "Papa". In fact, for Father's Day he asked me to order Don a shirt with a picture of the two of them together. I did and the caption on it says "Me and Papa". 

I find myself being grateful this year for a man who not only provides for us but also loves us enough to stick it out no matter what Sotos or life may throw at us. I hope that all of you have somebody in your life that makes you grateful. Be sure to tell them. 

Sincerely,

Kellie 
SSSA President

COLLEGE
life
by Owen Eigenberg
  
Advice from older people with Sotos syndrome to the younger generation:

People with Sotos syndrome possess a certain unique quality to them.....some are affected differently than others.


Just be who you want to be.


Owen Eigenberg
UMSL 
In This Issue
SSSA 
Video Corner

Students with learning disabilities give their teachers some heartfelt advice. 

DVD:
A Journey from Diagnosis through Life
created by the SSSA
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THANK YOU
SSSA 
support
SSSA Notes sends our prayers and support to Paris, France.

Vive la France! 




 
 Meet our newest Board Member
 Linnea Dugan

Hi!! My name is Linnea Dugan, and I am a proud Sotos Mom! I am married to a wonderful man named Steve. We have 2 beautiful children, Hannah (8) Sotos, and Noah (2). I have been a member of the SSSA for 5 years. My daughter was diagnosed with Sotos Syndrome when she was three. Our family just recently moved to Indianapolis from a south suburb of Chicago. We have been here since the end of July. Although we miss family back home, we love it here and have made lots of new friends!! I am a brand new stay at home mom! Most days I love that too, but am definitely used to working, so some days I get a little bored. However, it is easy to keep occupied with a 2 year old, that is for sure! We are currently starting potty training (our 2 year old) so wish me luck! I also answer the SSSA hotline, so that also keeps me busy at home! I love to read, shop, take the kids out and about and spend time with family!! We spend our days at the park, the nearby apple orchard, going to the zoo or childrens museum, across the street at our new friends house or watching our favorite movies at home!!
Being a member of this organization has been wonderful for me! I have learned so much from so many other families, and made some wonderful lifelong friends! I am honored to be a board member, along with so many dedicated people! Thank you so much for the opportunity!!


 "Glad to be Back"
 member story

Thomas Schoch is now seventeen. 
"His 2 favorite things are swimming and his big sister Cheryl."


"He is pictured on the far right with his medley relay team at the 2015
summer olympics. It always feels good to get gold. He also swims with the
Morris County Swim Club and his high school team. Go Mt Olive! 
Many of Thomas's health problems have improved as he has gotten older.  
 Thomas is always looking for new teen
friends in the area."

from the SSSA....Welcome back!
 
 Inclusive 
 schooling 
 

Long derided for welcoming too few kids with disabilities, a new report finds that a growing percentage of charter school students qualify for special education.
About 10.4 percent of students at charter schools have disabilities compared to 12.5 percent of those attending public schools. Children with disabilities at charters, however, are far more likely to attend classes alongside their typically-developing peers.
The findings come from a report released this week by the National Center for Special Education in Charter Schools analyzing information gathered by the U.S. Department of Education in its 2011-2012 civil rights data collection.

Continue reading this story on the Disability Scoop website.

 Cyber Shopping
 supports SSSA

It's Coming! The Annual Black Friday/ Cyber Monday Shopping Frenzy! Turn your cyber shopping into a donation to the SSSA!



Remember--if you are shopping through Amazon, you can help SSSA at the same time! Thanks to the AmazonSmile program, Amazon will donate 0.5% of your eligible purchases to Family Voices! 

It costs you nothing more than what you might plan to spend through Amazon anyway, and you help SSSA in the process.




Good Shop = donation to the SSSA
The best part of being a Goodshopper? A percentage of your purchases gets donated to Sotos Syndrome Support Association - SSSA. 




 Services 
 in the United States

Brief Summary of Services in The United States 

Child birth to three years of age
  • Check your states Early Intervention Program (EIP). You may check with your child's Pediatrician on who the EIP local services would be and if your child is eligible.
Child three to eighteen years of age
  • Apply for Developmental Disabilities Administration in your state (may have a different name depending on where you live). You may find this by contacting your local ARC chapter ARC Chapter by State.
  • You may call local school district about six months before your child's third birthday. If your child is eligible for preschool special education services or developmental preschool, an Individualized Education Plan (IEP) will be developed by the school district before your child's third birthday. Creating a folder before your child turns three which includes birth certificate, immunization record, medical records, photos, evaluations, assessments, medical information and anything else that may be helpful. The Individuals with Disabilities Education Act (IDEA) requires public schools to provide your child with free, appropriate public education from age three to 21 years of age. Each school district is responsible for their own special education. The IDEA law indicates transition needs must be identified at age 14 and transition services must be provided at age 16. Students can attend school and receive support through their 21st birthday, if they have not met their graduation requirements for IEP goals. Your school may have a transition program for students 18-21. click here to read on about services past 18

                                                                                                                                                                                                     Reference: The ARC








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

 Recipe
 corner 

Pumpkin Bread 
(I love to bake this a few days before Thanksgiving in this beautiful 
Nordic Ware Pumpkin Loaf and give it away to guests)

3 cups sugar
4 eggs, lightly beaten
16 ounces canned unsweetened pumpkin
3 1/2 cups flour
2 teaspoons salt
2 teaspoons baking soda
1 teaspoon baking powder
1 teaspoon nutmeg
1 teaspoon allspice
1 teaspoon cinnamon
1/2 teaspoon cloves
2/3 cup water
  1. Preheat oven to 350 degrees. 
  2. Butter and flour 2-9 by 5 loaf pans. 
  3. Stir together sugar and oil. Stir in eggs and pumpkin. 
  4. Combine dry ingredients in separate bowl. Blend dry ingredients and water into wet mixture, alternating. 
  5. Divide batter between two loaf pans. 
  6. Bake for 30 to 40 minutes or until cake tester comes out clean. Let stand 10 minutes. Remove from pans and cool.



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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