NDSC Annual Convention Orlando

We were very lucky recipients of a scholarship from our local Down syndrome affiliate, Piedmont Down Syndrome Support Network, to attend the National Down Syndrome Congress Annual Convention.  The convention was held at Disney's Coronado Springs Resort and Convention Center at Disney World in Orlando, Florida. For us, the convention is more than just a chance to sit in informative sessions for a weekend, it is also a time to spend time with our extended family in the Down syndrome community.  We- ok, I, have met some of my closest friends because we share the common bond of having children with Down syndrome.  We are each other's support, even if our kids are facing different challenges.  Convention is a time to be together and really feel like you belong without any prejudices or preconceived ideas (unless you are sitting with friends at the pool bar chatting it up when the drunken addition starts beligerantly telling me how I shouldn't even be at the Ds convention- I should be at an Autism convention.  Yeah, not the highlight of the trip, but oh well...)

We took advantage of Disney's Magical Express.  We put a trusty little bag tag on our luggage and once we dropped it off at the airport, we didn't see it again until Disney delivered it directly to our room at the resort!  Just some advice for those traveling with children, if you didn't know it already- there is a family security line at the airport!  If there hadn't been that line, we would have missed our flight out of Charlotte since we hit a 45 minute delay on the way there.  The Air Tran employees weren't very helpful either!  They told me that I would likely miss my flight because the security line was SO long.  Did they mention that we may make it/save time with the family line?  Of course not.  That would have been too easy.

Welcome to Florida!  Hot, hot, humid Florida.  It's humid in North Carolina, but it is REALLY humid in Florida!  Oh.My.Word.

We arrived on Thursday and really just relaxed.  Registration opened up Thursday night and after I picked up our packets, I noticed Dr. Libby Kumin sitting on one of the benches in the convention center hall.  I made a point to go up to her and talk about Ethan's recent Loyola evaluation (which was at a clinic that Dr. Kumin founded!)  The therapist that evaluated Ethan was a student of Dr. Kumin's and she spoke very highly of our therapist, Maren.  I happened to have the evaluation in my bag and Dr. Kumin was happy to look it over.  This may have been a highlight of our weekend. 

Friday morning, we got up and left to go pick up our rental car for the day.  We planned on visiting Give Kids The World again- the resort where we stayed for Ethan's Make A Wish trip.  We took advantage of having the car and availability to go to Wal-Mart to pick up some food/snacks/water to keep in the hotel room so we could save at least a little bit of money.  We had to get back to the resort since the sharing sessions were to begin at 3:30. 

This was Scott's first convention.  I didn't think that he was going to go to any of the sessions, but he did and I am so happy about that.  First up, was the Complex Needs sharing session.  The sharing session is one of my favorite parts of the convention.  The sharing sessions consist of different options:  Mothers Only for different age ranges, Fathers Only for certain age ranges, Single Mothers, Grandparents, and Complex Needs.  (There are others, but I can't think of them all right now)  I can tell you that the first year I attended a conference where I noticed the sharing sessions was in Atlanta and I went to the Mothers group for 5 year olds, I think it was.  There was absolutely NOTHING that I had in common with those mom's.  So, when Kansas City had the Complex Needs session, I was SO excited.  There are many times that I feel isolated even from the Ds community and I am surrounded by other parents that feel the same way in the Complex Needs session.  We can share and learn our experiences and knowledge. 

After the sharing sessions were over, it was time to prepare for Opening Ceremonies!  The OC is always inspirational as we learn new developments and get to hear from some amazing self-advocates!  Ethan was so funny- he kept walking up and down the aisle laughing.  Another great thing about convention- kids can talk or walk down the aisle without upsetting anyone.  Ü

Saturday was going to be a FULL day.  The first session that Scott and I attended was given by Dr. George Capone.  Dr. Capone is very well-known in the Ds community.  He has done a lot of research on neurobehavioral disorders in people with Ds.  This could range from those on the Autism spectrum, to bipolarism, to ADHD, etc.  The bottom line for us was that there are so many characteristics of Ds that coincide with autism, so it is not always the easiest to give a concrete diagnosis of autism.  It just depends on the professional you are seeing to make that diagnosis.  Dr. Capone talked a lot about different medications and answered many parents questions and concerns in regards to those medications. 

My next session was about the legislation affecting those with Ds.  I was surprised that I wanted to attend this session because I HATE politics, but I am so glad that I went.  It was very bi-partisan, so I didn't have to listen to the left fight the right and vice versa.  I don't need to listen to that junk- I need to hear what is happening and how it affects MY child.  The speakers did a great job at doing that.  I was, particularly, interested in the ABLE Act.  What is the ABLE Act?  Basically, it is an account that money can be placed in that does not affect services provided to those with a disability.  So, Ethan was on Social Security Disability, BUT it governed how much money Scott and I could make, how many cars we could have, how much money we could have saved...the ABLE account would make that money exempt from being counted towards the limits put down from the government.  As kids with Ds grow into adulthood, they need the opportunity to have money saved just like you and me.  This is a great movement for our kids! 

While I was sitting through legislation fun, Scott took Ethan to the Post-Walking Skills session with Patricia Winders.  Scott reports that we should be working with Ethan more on balance boards and kicking a ball.  He says that the transition from carpet to hard wood can be especially noticeable to a person with Ds.  This may be why Ethan would always drop to the floor each time he made that transition.  (Side note that I learned from another session:  Numerous parents reported that the Sketchers Shape-Ups have helped tremendously for concentration and balance for their children!)

Once the first two sessions were complete, we browsed the exhibit hall and headed back to our room for lunch and to get Ethan down for a nap.  Good news:  Ethan napped.  Bad news:  I napped with him and slept through the wake-up call to go to the 3:30 session.  I was so upset because the 3:30 session was one that I really wanted to attend (Why Federal Legislation Preventing Restrain & Seclusion is Essential - and What Parents Need to Know).  BUT, my mother-in-law attended it and along with the compendium that the NDSC provides with the powerpoint slides (if available), I have some great information to get started in order to learn more.  The best resource on this subject is, by far from TASH.  Please go to www.tash.org/aprais for further information!  GOOD STUFF!!!

Saturday night ended with the dance.  We ♥ the dance.  It is the absolute best time to see all of the self-advocates together with their friends and families to dance and have the time of their lives!  Seriously- there is nothing like it!  Chris Burke along with Joe & John DeMasi DJ'd the dance again.  Chris has been one of the most famous faces of a person with Ds, so he is like the Ds celebrity.  But, I am over Chris Burke.  I think that he has done great things for our kids, but he is actually quite rude if you try to talk to him.  Cordial, but rude at the same time.  It is hard to explain, but I have spoken to many about it and more often than not, people feel the same way.  Anywho, we were able to meet up with some of our Downsyn friends during the dance!  It is always a great time to be together!

Sunday, Scott went to the D.A.D.S. session.  He was kind  of disappointed that the session mainly consisted of how to create a local affiliation of DADS.  I think that Scott would have enjoyed more about what the men get out of having a specific organization for the father's and how having the support of other dad's helps them.  Oh well, it's ok.

I went to a session with Michael Cardella and his mother, Barbara.  What a warrior Barbara was!  She did not accept it when people would tell her that Michael couldn't do THIS or THAT.  He was fully included, graduated from high school, and is just an inspiration!

Scott and I attended two different "last" sessions.  Me- "Parents and Schools as Partners", and Scott- "Managing the Medically Complex Child".  I was torn on which session to attend since I am really wrapped up in Ethan's education right now, but I "know" the speakers from the Medically Complex session.  I felt that Scott could remember more from the medical side since he gets that (to a certain extent, LOL), but he isn't really up on the school stuff so much. 

I really wish that my session was on Saturday.  It could have been a two-hour session, at least!  LOTS of great information.  Look out, Ethan's school district!  LOL!  I really don't understand how our district continues to get away with what they do. 

I would say that this year's convention was a HUGE success!  We saw friends, laughed, and cried.  We were educated and we were inspired.  Thank you, again, to PDSSN for giving us the amazing opportunity to be able to attend! 

Next year- SAN ANTONIO, TEXAS!!!!  Ü