Princeton Down Syndrome Conference

On Sunday, I attended the 6th Annual Down Syndrome Conference at Princeton University.

This was the first time I had ever been to the campus.

 

 

There was a lot of beautiful architecture.

 

The one thing about this conference that's great in my opinion, is that Princeton puts on a carnival for the kids with Down Syndrome.  The parent must pre-register the child and once that is finalized, each child is assigned a "buddy".  Princeton's Rugby team and other students volunteer their time to be buddies for the day.  Three days before the conference, the buddy calls the home of the child with Down Syndrome to talk to the parents to learn a little bit more about the child.  They then have the opportunity to speak with the child on the phone if possible.  The day of the conference there is a 30 minute drop-off time where the child and buddy get to know each other in person with the child's parents before heading off.  Each child wears a name tag on the front and back of their shirt, that says (for example), "Sarah with Buddy Michelle", so everyone knows which buddy belongs to which child.  It's nice that parents can bring their children.  This allows many more couples to come as opposed to one parent being at home watching the children.  

 

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The opening speaker at the conference was Brad Hennefer and his family.  Brad is a 23 year old young man (24 next month as he pointed out) that happens to also have Down Syndrome.  Brad grew up in Cherry Hill, New Jersey.  Brad was a member of his high school varsity basketball and golf teams.  With the support of friends, family and community members, The Brad Hennefer Golf For Life Foundation was born.  The goal of the foundation is to facilitate a network of regional and national golf instruction programs, clinics and competitions exclusively for individuals who have Down Syndrome.  They are collaborating with the National Down Syndrome Congress (NDSC) and the Philadelphia Section of the Professional Golfers' Association of America (PGA) to make this possible.

 

 

This is a great video to watch were Brad was featured as Comcast Sports MVP of the month.  His parents actually showed this video to introduce Brad to people attending the conference that might not have known who Brad was beforehand. One of Brad's friends and teammates featured in this video, Drew Berlinsky, actually spoke this year at the National Down Syndrome Conference.  Think about how incredible that is.  Here is a young man, no other connections to Down Syndrome other then his high school friend, Brad.  They graduated together almost 6 years ago, still remain friends, and he traveled to a Down Syndrome Conference to speak about his friend.  That is an amazing impact from one child playing on a basketball team! 

Brad still has many of his varsity basketball and golf teammates as friends. 

 

Brad's parents spoke about what it was like for their family raising a child with Down Syndrome.  Brad has one older brother, Bobby, who is a PGA Golf Professional.  The Hennefer's gave their top 10 pieces of advice for raising a child with Down Syndrome.  They feel that sports and inclusive education really made Brad the young man he is today.  Brad's mother said they tried many sports before they were able to find one that worked for him but they never gave up.  Being apart of a team was something that was not only beneficial for Brad but his teammates as well.  Brad's father spoke with Cherry Hill's basketball coach to see if Brad could be team manager or participate during practices.  Normally there are only 14 spots available for a varsity basketball team.  Brad's father didn't want a deserving player to be denied access to the team because of the "kid with Down Syndrome" and have animosity.  So he, along with support of the basketball coach, petitioned the school district to allot a special 15th spot just for Brad.  The district allowed the addition of the 15th spot.  However, during practice, the coach saw just how good Brad was at 3-point shots.  Brad, and Brad alone, earned his place along side his teammates in actual varsity basketball games.  

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The first session that I attended had three different speakers/organizations.  The first was GiGi's Playhouse.  As many of you know, I have been a huge supporter of GiGi's Playhouse ever since I first found out about them.  I must have told Chris 1,000 times how I would love to open one in Pennsylvania.  (I found out you only need to raise $10,000 to get started...hmmm...project???)  Something new that GiGi's Playhouse in New York is working on is it's literacy program.  Click here to learn a little more about that.  The program sounds amazing and they have excellent people working on it.  Britt Sady, Executive Director of GiGi's Playhouse in NYC and Jordana Mendelson, Education Director of GiGi's Playhouse in NYC were both in attendance.
 I was happy to see GiGi's Playhouse there and to get on the mailing list.

The second speaker, Troy Memis, was with the organization TOPSoccer.  TOPSoccer is a community-based training and team placement program for young athletes with special needs.  The TOPSoccer program is designed and administered by US Youth Soccer and its volunteer TOPSoccer committee provides meaningful learning, development and physical participation opportunities to these young athletes through the game of soccer.  It really seems like a great program.  They are looking for people to start news leagues as well.

The third and final speaker was Terri Wilson, Camp Director of Camp Sun N' Fun.  This is a camp for children and adults with disabilities based in Williamstown, New Jersey.  They offer a one week camp, two week camp and day camp.  It seems like a place where kids can have a really great, judgement-free time.

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The final session I attended was about inclusive education.  Inclusive education and mainstreaming are NOT the same thing.

Inclusive Education - Inclusion is an educational process by which all students, including those with disabilities, are educated together for the majority of the school day.  The practice of welcoming, valuing, empowering and supporting diverse academic and social learning among students of all abilities is called inclusive education.

Mainstreaming is an educational practice where a student from a separate special education class visits the regular classroom for specific, usually non-academic, subjects.

Definitions from thinkquest.org

 

This session also had three speakers.  All three speakers were good, but one in particular was very impressive.  Her name is Paula Lieb, Esq.  She is the President and CEO of the New Jersey Coalition for Inclusive Education.  She was such a wealth of knowledge.  She is the person that when Raymond is older, I want to pick her brain.  She was awesome!  I received a lot of good information about IEP's (Individualized Education Plan's) and making the most of them.  The third speaker, Hillary Freeman, Esq., spoke about some "red flags" to identify from school districts, as well as, the IEP's.  Freeman's brother has a severe form of Autism.  Her law firm specializes in and advocates for people with disabilities across the lifespan.  I skipped over the first speaker, Lin Rubright.  She is the mother of 6 girls.  Her oldest and youngest daughters both have Down Syndrome.  She is the Executive Director of the Anna Foundation for Inclusive Education.  She was very knowledgeable also.  I wanted to ask her if her youngest daughter was biological or if she was adopted.  Considering that it's really none of my business, I didn't ask, but I was curious. 

 

All in all, I really enjoyed the conference and I will go back next year if it is offered.

Thank you so much to Princeton University for hosting this event!!!

 

Until Next Time!

Lots of Love,