DIS 2014 Annual Member Meeting

 2014 Annual Member Meeting 

On 6/25/2014 at Beggar's Pizza, we had a wonderful chance to spend an evening with friends, (old and new) and be a part of an organization full of so many wonderful families!  Thank you to everyone who was there, in person and in spirit!  During the meeting, we reviewed the annual financial statements and the wonderful programs and events we have enjoyed in 2014. Looking forward to 2015, we brainstormed ideas for the upcoming year, and approved a budget to make 2015 to make it all happen!  Two door prizes were awarded to DIS members who came out to enjoy the evening with us. Additionally, a new program for families was rolled out, which will start in June of 2015. Two final items for the evening were enjoying essays from our scholarship recipients (not saying anyone cried!)  and gratefully receiving our first Gold Sponsorship of the 2014 Walk for DIS!  

Many of you may have received an email with a list of some of the fun things that DIS families have enjoyed over the past year, including:

• iPads for children with Down syndrome

• Conference and educational program stipends for family members of children with Down syndrome

• support for families experiencing serious medical issues

• College scholarships 

• support for other organizations who also serve people with Down syndrome, such as NADS and Gigi's Playhouse

• Affiliate training to begin Next Chapter Book Clubs in the southern suburbs

• Community outings including: Gymboree, Space Golf, Easter Egg Hunt, Trim-A-Tree, Ornament Workshop, Jazz Dance Classes, Konows Pumpkin Farm and others

• Ages & Stages Christmas parties 

• Mom's night out dinner

• Family picnic

• New parent information and support packages

• Giving Back to organizations such as: Ronald McDonald House, LifeSource (Blood Drive), Make-A-Wish Foundation

• We have expanded our lending library to include books and instructional materials that are not available from your local public library...many of which are written specifically for teachers to help THEM help our kids with Down syndrome!  We have added 9 new titles this year.

Ideas that were generated for 2015 include: 

• Participate in parade at Frankfort Fall Fest 

• Working at The World (First Midwest Bank Amphitheater) or Rt 66 Speedway to raise $

• Carnival

• Go Carting

• Illiana Speedway - Bike race for kids

• Educational guest speakers @ Local school districts for teacher institute days

• winner for dimes for downs to win $1000 and guest speaker paid by DIS 

• Write leters/draw pictures for soldiers

• Tour firehouse or 911 Center 

• Jump Zone - Chicago Ridge (brand new) 

• Pump it up 

• Space Golf

• animal clinic/paws

• Children's Farm

• open gym

     Congratulations to our first group of college scholarship recipients! 

 Of the five recipients (Andrew Gierut, Marissa Marchionda, Bailey Bartczak, Amanda Blount, Kylie Kratz) three were able to attend the dinner and their essays were enjoyed by all!  There was not a dry eye in the room, as the stories of what it means to have a sibling with Down syndrome and how that special someone has impacted their lives were shared with all. Both Bailey and Marissa will be attending Ball State University in the fall, Amanda will be dually enrolled at ISU and Morraine Valley Community College.  Adam Geirut will also be attending MVCC.  Kylie Kratz will be attending ********

Door Prizes

Joanne Gowaski and Peggy Marchionda were our two door prize winners, with Joanne winning a bag full of DIS gear (backpack, cup, knit hat, and more!) as well as a Target gift certificate and Peggy enjoying a gift certificate for dinner at local DIS supporter, Cooper's Hawk and Winery!  Congratulations Peggy and Joanne! 

New Program Rolled Our For 2015

  Down in the Southland is excited to share the details of our new Family Grant Program, which began on June 1, 2014. Family Grants will be made available to the membership of Down in the Southland to provide financial assistance which directly improves the life of the individual with Down syndrome. The funding for Family Grants comes from donations and fundraisers. Grants are awarded based on the availability of funds, which varies based on the amount of donations and participation in fundraisers in a given year. All of the details regarding eligibility, procedures etc. are on the form.  This form can be found on the Down in the Southland website, and can be completed electronically and submitted to DIS.  Receipts may be scanned and attached.  The form can also be printed, completed and mailed.  

Marissa Marchionda reads her essay

Bailey Bartczak reads her essay

Knights of Columbus - Council #11232

Lastly but most certainly not least, DIS had the pleasure of enjoying the company of Bob Palmisano from the Knights of Columbus Council#11232 from Peotone/Monee.  Bob talked with us about the work of the Knight's Council in Peotone and Monee and presented DIS with our first Gold Sponsorship of this years Walk For DIS (actually, it's triple Gold!) which included proceeds from their Tootsie Roll drive last year.  Their drive is the same weekend as our Walk  this year, so hopefully some of the kids can turn out on Friday and Saturday to help the Knights with all of the wonderful work that they do for families and people with special needs!  Thanks to all of the Knights of Columbus Council#11232!  

DIS board members receive the 'big check' from Bob Palmisano of the Knights of Columbus - Council 11232.  Rt to Lt: Judy Moreno, Lisa, Pringle, Juliette De Nova, Bob Palmisano, Peggy Marchionda, Mollie Gryga

As you can see, we had a busy, productive, fun filled evening!  We covered so much from financials and past events to new programs and future events, yet many lingered well after our meeting was done!  Our college bound scholarship recipients made us laugh and cry, and reminded us of what's really important and why we all do what we do and are part of DIS.  We were excited by new programs to benefit our DIS family in a meaningful way, hopefully for years to come. and in keeping with our goal of working with community organization, we were happy to add the Knights of Columbus to our growing list of friends in the communities in which our DIS families live. 

Looking forward to next year's business meeting  party, we are hoping to have a venue that will provide supervised activities for the kids so no one has to worry about childcare!   

Truffles E Truffles

     This year's NDSC 2014 Annual Convention had a wide variety of vendors in the vendor hall.  We are going to feature some of the organizations which may be less familiar to many, but they are doing wonderful work, or creating wonderful items!  We won't be able to feature everyone, so you might want to go to the convention next year and check them all out for yourself.   It was inspirational to see so many passionate people following their dreams and blazing their way in the world!

     The first vendor that we are going to feature is Truffles E Truffles owner Chef Adam DeBaker and his amazing truffles!

     According to an article in the Community Free Press, Adam has been making and selling truffles since he was 10, with the ultimate goal of funding an African safari!  Homeschooling has given Adam the freedom to follow his dreams and passions, and he is off and running.

Now, I'm not a real truffle lover, but since this was the only chocolate around at the convention, I had to buy a small box.  Oh my gosh!  I discovered that maybe I'm not a truffle lover because apparently, I have never had a good truffle!  These were A M A Z I N G !  I brought some home for my family, and the reaction was the same from everyone.  I enjoyed a powdered sugar covered truffle as the coconut covered truffles were all gone by the time I discovered their booth. I know which booth I will hit first next time!

Best of luck to Adam!

Inclusion: More than just being IN the classroom....

 

      At the 2014 Illinois Inclusion conference, keynote speaker Cheryl Jorgensen addressed the participants explaining how inclusion is "More than Just Being "In": Full Membership & Participation in Inclusive Classrooms".  She spoke of how even though many children may be 'In' the regular classroom, they still aren't full members or participants.

     They ride separate buses, work on a different curriculum, and have 'special' extra-curricular activities.  They are 'pulled out' of the classrooms for 'special instruction' or therapy, they are the only person who has an adult sitting next to them all day, or perhaps they don't have a way to communicate with anyone in the class.  Is that really 'inclusion'?  I don't think so.  At times, even the teachers don't really feel they are a member of their class and refer to them as 'your students' during discussions with the teacher with the special ed background.

     Jorgensen had a great term that she used to describe this phenomenon....it was like the kids are an "Island in the Mainstream", which she credited to Douglas Bilken from Syracuse University.

Think of what you know about an island.  It's land surrounded by water.  Water that is rushing by, doing what water does.  The island is not part of the water and the water isn't part of the island. There the island sits, in the middle of all that water, but it can't go where the water goes, it can't do what the water does.

 The island that may be in the 'mainstream' still isn't really a part of the stream and the flow that is happening all around them.  The island isn't part of the water and the water just goes on about it's flow, going around the island and, when necessary, brushing up against its shores and touching its edges when the wind blows a certain way, but for the most part, it just flows past the island.  But the island never gets to be fully part of the water either, it sits there in the middle, alone, with no one to share experiences, and everything just flowing past.

     That's what happens when inclusion isn't really inclusion.   

    Jorgensen told a few stories of children who had a variety of communication and developmental needs which were not being addressed, as well as gifts and talents which were not being fostered (or even really identified).   With just a few changes to their environment, the children's ability to participate during the school day increased pretty dramatically.  This was enlightening yet a bit disheartening.  It was wonderful to see how much of a difference some simple changes were able to make in the lives of these children.  At the same time, it was heartbreaking to think that it has taken so long for someone to think of implementing these changes.  I couldn't help but being reminded of pictures I have seen of children with Down syndrome who were institutionalized from birth because no one thought they were capable of learning anything. How their squalid conditions and lack of stimulation actually attributed to many of their developmental and behavioral issues.  Don't get me wrong, I'm not saying that schools today are like those institutions in any way!  It's just that society underestimated those children back then, and it's sad that we still have educational institutions which aren't always giving them the credit that it due to them!
     I'm not saying there aren't some great teachers, professionals, administrators and others involved in working with kids with Down syndrome, there are.  Unfortunately, it is much more common for me to hear that at as young as three years old, our children are already being put on their own 'Island in the Mainstream'. WHY?

     The inspiring part of her presentation was her list of 'How Do You Know Inclusion When You See It?"  (The emphasis is mine.)

• Included right from the start
• Electives
• Heterogeneous (diverse) General Education Classes
• Eye to eye with your friends
• Giving & getting a helping hand
• Seeing Disability as just another kind of diversity
• Extracurricular activities
• Participating in what everybody else is doing
• Presuming competence to learn academics
• Accessibility of all learning materials
• Capitalizing on talents and interests
• Being willing to try another way
• Seeing all kinds of beauty - all students are just perfect
• Having a way to communicate about everything.....ALL the time
• Participating in graduation at age 18
• Going on to college....
• ...or work....
• ...and love.

I loved her list of the benefits of Inclusion

• Higher expectations
• Better performance on reading and math tests
• Fewer days missed from school
• Fewer problem behavior referrals
• Value-added benefits to the general education classroom
• Students who receive their educational program with same age peers without disabilities have greater access to the general curriculum
• Opportunity to develop social relationships
• Promotes the value of diverse community for all students
• Best preparation for adult life

and she had research to back it up.....

• The National Center on Inclusive Education at
• http://iod.unh.edu/PriorityAreas/inclusive-education/ncie-resources/research-publications.aspx - “Outcomes and Insights from Researchers on Inclusive Education: For Families and Teachers” and “Rationale For and Research on Inclusive Education: For Professionals and Researchers”
• TASH at http://tash.org/advocacy-issues/inclusive-education/ -“Frequently Asked Questions About Inclusive Education” and“Dispelling the Myths of Inclusive Education”
• SWIFT SCHOOLS – funded by the U.S. Department of Education Office of Special Education Programs - http://www.swiftschools.org/

We will be posting more thoughts on inclusion and information from the Illinois Includes conference in the future.  

What do YOU think?  Let's hear from you in our comments below!