A little over a week ago, I spent several days attending the Down Syndrome Congress Convention. I had planned on writing about my experience right away but life got in the way. That has been happening a ton over here the past month…but I will save that for another day. Back to the convention…

I had no idea what I was going to learn or experience. This was the first time I have ever attended the Convention. In the past 11 years, I never even gave it a thought to attend one. And to be completely honest the only reason I decided to go was because it was in Pittsburgh. I figured it would be a good opportunity to see what it was about without spending the additional money on travel expenses.

Wow! It was more than I ever expected! Not only did a learn a lot of great tips and strategies, I was overcome by the welcoming atmosphere. It felt like home. It felt safe. It was easy to start a conversation with a stranger. There was no awkwardness or apprehension…only kindness and understanding. It was like talking to a friend you have known for years but even better. Most conversations ended with hugs and laughs. There is something special when you know you are the lucky few.

Walking around seeing all the young adults and adults with Down syndrome filled my heart with so much pride, joy and hope. I watched them reconnect with friends. I saw several couples happily walking holding hands. I met a few that are making such a difference. They are paving a way filled with opportunity for others with Down syndrome. They are entrepreneurs. They are advocates. They are showing others that we are more alike than different. Every single one of them brought a smile to my face and filled my heart with so much happiness.

I had the opportunity to meet several people that I follow on Instagram and Facebook. I have so much respect and admiration for them. There is something really special when you have made a connection with someone through social media and then you meet them in person. Social media often gets such a bad rap but this is the really good thing about it. It gives you an opportunity to share and connect with each other. To help each other whether you live in the same town or across the country. You can share your experiences so others know their feelings are valid and they are not alone.

 

I did learn a ton of great information…I swear it wasn’t just a weekend of socializing. Every session was filled with helpful tips and strategies. I learned about the Able Act and Special Needs Trust which was not on my radar at all even thought it should have been. This will be a top priority. I went to a couple different behavior sessions that were very helpful. Emily doesn’t have huge behavior issues but it’s still great information. As she gets older, new behaviors could arise. I would like to be ahead of the game if possible. Being reminded to “respond not react” is not a bad thing. Also learning some new calming techniques that would be helpful for everyone in the family including me is a plus. The one on curriculum was fantastic. I was also really happy to see that Emily’s team has been using a lot of these strategies. I plan on sharing more with them. My very first session was regarding puberty…ugh. Not my top choice of discussion topics but a very necessary one. I am not look forward to this one bit however I now feel a little more prepared. She gave us lots of helpful strategies regarding explaining the process along with how to maintain good personal hygiene. I am still dreading it but not quite as much as before. She has written 2 books; one for talking with your daughter and one for the parents. I will be starting to read these very soon. She also has written one for boys. I am also coming home with some tricks up my sleeve to get Emily to wear her glasses. I can’t wait to try it out. Hopefully I will have her wearing them before school starts…fingers crossed. There were so many sessions that I wanted to attended but couldn’t. I can listen to the presenters online which is a bonus. I just need to find some time.

 

I plan on writing about all the information I learned as I work with Emily. Hopefully I will be able to help others by sharing what I learned. So stay tuned…there will be more to come.

Jena participated in the Brothers and Sisters Conference. It gave her an opportunity to interact with other siblings. She had two highlights…on Saturday Mikayla Holmgren spoke to all the kids. She is dancer, Best Buddies Ambassador, Public Speaker and Model with Down syndrome. Jena really enjoyed her talk with them. She also enjoyed the off-site filed trip on Sunday. Who doesn’t love a field trip?!

 

To sum up my experience, it was the most uplifting, encouraging, loving, joyful, educational, empowering, heart warming couple days. It was a reboot. It exceeded my expectations. It left me feeling like I can do this. It won’t be easy but I am strong enough to do it.

This was my first convention but it defiantly will not be my last.  Who knows maybe next year I will make a trip to New Orleans.

I also want to give a shout out to some pretty amazing vendors, bloggers, organizations, fundraisers and advocates. Give them a follow….I think you will be happy you did!

 

Ruby’s Rainbow; A Lil Something Extra;  Mikayla Holmgren; Megan Bomgaars; The Lucky Few; Woodbine House; DSDN; Kelli Caughman