"Enjoy the journey. Enjoy every moment."

The 2010 NDSC conference is over, but the memories and learning will last. What a wonderful experience this has been, meeting and talking to so many experts (and I mean all the parents, too!) and we're coming away with some great ideas and lots of things to think about.

Now that the conference has ended, it's time for a bit of fun at this phenomenal park. Walking around the Magic Kingdom today, it was good to see a few familiar faces from the conference.

I hope you enjoyed coming along with us to the convention, even if it was just by reading these posts. I won't be continuing this blog after next week, but you can always contact me with any questions.

The FCDSN Seabreeze Summer Fun Day is coming up in just a few short weeks. Please make sure to get your ticket orders post marked by July 23. I'll be mailing out all orders on Monday the 26th.

See you then!

"That is what learning is. You suddenly understand something you've understood all your life, but in a new way."

The highlight of the convention is learning. With so many sessions to choose from, it's almost impossible not to learn something new! We've found that the greatest info has come from meeting other families with children with special needs. Ideas and solutions that may not come from a book can sometimes be more helpful than anything you read.

On the other hand, with so many specialists wandering about, it's simple to pick up some new pointers and strategies. Dr. Libby Kumin, writer Nancy Tupper, and behavioral specialist Stacy Taylor are just a few of the amazing people we've had a chance to chat with and learn from.

We even had a chance to speak with Jane Page-Steiner, president of JPS Nonprofit Strategies, plus the president of the Florida Down syndrome group.

This has been such an amazing experience, and we can't wait to find out more about next year's conference scheduled for August 5-7 in San Antonio, Texas.

Some of our best experiences have been with all the people here with Down syndrome. One young man asked me why I was in a wheelchair. When I told him I broke my ankle, he responded "That's ok. You come find us this afternoon, and I'll look after you!". That's the spirit we've come across during this whole convention.

"We should all be thankful for those people who rekindle the inner spirit."

The convention vendor room was amazing. So many organizations and products, just to support people with Down syndrome. We saw Chris Burke, and met some amazing artists with DS (see photo of Dylan below by his table of artwork), plus tried out some products and took a look at 'what's new'.

Abigail really enjoyed trying out the trikes that help with mobility. They're really cool and she didn't want Daddy to stop! The pedals have velcro to keep little feet positioned, and as the bike is wheeled and they hold on to the handles, the handles go 'round and 'round, too!

The boys had fun playing with the exercise sticks that make sound as you move and groove to the exercise tapes to encourage more range of motion. They also had loads of fun trying out the skateboards without wheels; rounded boards that slide over carpeting and floors that help with balance and coordination.

There were authors with DS signing the books they sold, and musicians and even tailors making clothing designed for people with Down syndrome. Oh, so many things to see and do!

"Education is learning what you didn't even know you didn't know"

Today was an early start at the convention. On the way to the convention center, a full rainbow appeared (I don't know how well it shows in this photo). We really are finding the end of the rainbow, and it really is full of treasures.... all of the wonderful people with Down syndrome at this convention!

There are, in total, 62 learning sessions to choose from over Saturday and Sunday. You read that right.... 62! How do you choose? The day is broken into 2 morning and 2 afternoon sessions, each lasting 1 1/2 hours. Topics range from Sibling Issues to Fitness to Health Care Concerns to Volunteering and Service to to Transitions to Gross Motor Development to Planning for Adult Care to Speech and Language Learning to Behavioral Issues to..... well, up to #62!

You can see the dilemma of trying to choose just 4 topics for the day! Each day also features keynote speakers and self-advocate presentations, as well as a film 'festival'. In addition, there are quite a few vendors set up at tables with products and services of interest. There are artists with DS, products to teach, toys to learn with, clothing tailored specifically for people with DS, Specs4Us, Physician 4-d ultrasound info, books... I could write entire pages.

Suffice to say, this has been a wonderful opportunity to gather information and learn so many new things. It will take quite a while to get through all of the information we've picked up.

Along the way, we've also managed to meet up with the Tumminelli family and our Education Appreciation Celebration winners that were chosen at our own FCDSN day long conference this past March; Alicia Coleates and Krystal Eichas from BOCES 2. They tell us that they have learned a lot and have gained some excellent information and ideas.

We've also met Sue Joe of the NDSC, who was very impressed with our Appreciation Celebration event. Lots of folks commented on the bright t-shirts I made. We've met people from Ohio, Alabama, California, New York, Florida (of course!), Puerto Rico, and even a Rochester native now living in California!

We're now back in our cabin and it's past midnight... time to sign off for the evening. I'll post some more info, photos, and experiences tomorrow. See you then!

"Without leaps of imagination, or dreaming, we lose the excitement of possibilities. Dreaming, after all, is a form of planning."

WOW!!

What a time we're having. Sorry about the delayed posts, everyone. We had to get hooked up for internet access and we've been so busy at the conference!

I'll break this up into a few posts so you won't have to read one really, really long one. This experience has been just fabulous. We arrived Friday afternoon, after a 24 hour drive. Driving to FL with 4 kids in the van, plus one Mom in a cast, plus a Dad & Grama... is a whole experience in itself!

We made it to the Virginias by midnight and the older 3 kids just had to stay awake to see them. By breakfast time Friday morning we had made it to Savannah, GA and found a Denny's to take a break and let the kids stretch their legs. Abigail just ran and ran around in circles on the grassy lawn.

A stop at the FL welcome center was a must, too, for a few updated maps. Every time we passed a state line, the kids would cheer and ask "how far to the next one?"

Once we got settled in at our site (we're staying at a cabin in Fort Wilderness), we headed over to the convention center at the Coronado resort here at Disney World. The convention center is enormous, and there were so many things going on. We checked in and received our itinerary booklets and compendiums, which contain the presentation slides from all of the presenters. If you would like to see something, just let me know!


We caught the end of a presentation featuring several self-advocates and it is SO inspiring to see these amazing people describe their own typical lives. They live every day moments with such a wonderful attitude and joy in their accomplishments and independence.

While we were there, we hooked up with the Cahill, Carleton, Neatrour, and Sheehan families from the FCDSN. It's always good to see familiar faces and share experiences.

Following the presentation, before kicking off a dance, they played a great song with the refrain 'tonight's gonna be a great night'. All the self-advocates in the audience crammed the stage, singing and dancing their hearts out. What a joyful sight!

Friday evening we also attended the ice breaker, "2010 Magic Moments/Just Dance!" and self-advocate DJ Pete Asplundh. The photos I took cannot possibly begin to capture the excitement of the night. There must have been over 300 people with DS on the dance floor, ranging from babies in their parents' arms to adults with grey hair!

There were 2 huge video screens behind the dance floor on either side of the room. There was a dessert table and tons of music and fun. At the dance an announcement was made that a couple with DS were getting married. There was so much going on!

After such a long and event-filled day, could Saturday get any better?

"The real voyage of discovery exists not in seeking new landscapes, but in having new eyes"

... and off we go!

We're looking forward to seeing some familiar faces at the conference, and also to meeting many, many new ones. Wish us luck on our long drive, and also for those families traveling by plane.

Look out Disney, because here come the real princes and princesses. May all the families making this journey be safe. See you there!

"Life is what happens to you while you're busy making other plans"

Just 1 day to National Conference! We've been busy getting ready for the long drive there.

...busy getting packed... busy deciding what to attend at conference... busy figuring out when we'll arrive and depart... busy getting the vehicle we'll be driving down...

... so where has all the time gone?! Ah, yes, it has disappeared into all the busy-ness. We're planning on NOT being too busy at the conference to enjoy the presentations and meeting new families and friends. All this running around; leading up to a few glorious days of fun.

Who knew that planning a relaxing, enjoyable weekend would be so hard to plan for? We'll keep you posted as we head off and arrive, so keep checking back for updates!

If you have a question about conference while we're there, feel free to comment and we'll find out for you if we can!

"One thing I like about stones in my path, is that when I cross them they become my milestones"

Just two days to go! The kids found their Mickey Mouse ears and are getting ready for the long ride. They've picked out some books and a few small games, but why is it when you really need to get something done, little obstacles seem to strew your path?

Our older daughter is completely packed and ready to go. Bless her little soul, I wish I were, too! Tonight is finding clothes and packing night for the other 3 kids. Then I just have to pack for me, and we'll be ready for our trip to National.

It sounds so official.... "National". It's like you've always loved chocolate, but finally get to visit the world headquarters of Girardelli. As much as you love chocolate, there's something awe inspiring about being where things begin.

We're hoping for a new beginning like that at National Conference. It's like we've been tripping along on the little stones in our path, but now we're making the big effort of planning for, and going to, National Conference, where it all comes together.

Wow. What a great milestone.

"Family... a group experience of love and support"

Today was a bit hectic with Abigail beginning her summer program of therapies, and the older 3 beginning a week-long summer camp as well. They'll miss the last day, but they're not too upset because they know we're heading to an even bigger camp and tons of fun.

Just 3 more days to begin our journey! We have another extra special reason to look forward to this year's conference. Our own FCDSN member Kyle McGonigal will be a presenter! Kyle wrote a presentation, and he was chosen to be part of a panel that will discuss physical fitness and healthy lifestyles. What an important issue for us all, regardless of abilities! We're proud of you, Kyle!

Another FCDSN member, Dan Kulp, will be speaking on this year's Buddy Cruise. Buddy Cruise is a non-profit organization supporting friends and family of people with Down syndrome across the nation. Basically a conference on the water, the Buddy Cruise offers educational information and presentations, as well as entertainment.

This cruise normally sets sail in October to celebrate National Down syndrome awareness month, but this year they decided to piggy back the NDSC Florida conference. It's a shame we can't attend both venues.

Congratulations and good luck, Kyle and Dan!

"Frustration is the compost from which the mushrooms of creativity grow."

Just 4 days until Conference, and still so much to do! Today is planning day.

Since my ankle is still not healed, and I have to wear this cast for another month, we need to plan for a wheelchair at the conference and at Disney. I can hobble about a bit, but a day long event or walk about Disney is out of the question.

We cannot manage airfare for 7 people (David and I, plus the 4 kids, plus one mother-in-law to help watch the kids while we attend the conference and at Disney), so we're driving down to FL. We'll be swapping a full size passenger van for our mini van from a relative to give us a bit more wiggle room for the kids, and my cast, and all the luggage.

Our son Kyle has a food allergy, so we have to plan for his meals and what we can take or what can be bought on the way or at Disney.

Today at lunch, our eldest said "Mom, I'm really looking forward to being in Florida. Not driving there, but arriving". I had to laugh. My sentiments, exactly! At the moment, the kids are concerned about what sunglasses they can wear with their regular glasses.

Abigail, at least, doesn't have to worry about glasses yet and loves her new pink shades we bought for our trip.

Although the journey may be frustrating, we know the end result will be great. How true this is for every day life, and not just long car trips.

Even though there are lots of logistics involved, I'm positive it will all be worth it to experience National Conference. I still occasionally meet people that are totally ignorant of what Down syndrome is, referring to the condition as a disease or assuming my daughter can only be happy all the time.

We're hoping to come away from this conference inspired and energized with new ideas to help educate people with a positive attitude and outlook.

Education can happen in the strangest places, and every individual we can reach, either in a checkout line or at a family reunion or at a National Conference, is a positive change toward acceptance of people with Down syndrome. We want to be a part of that positive change.

"Cleaning your house while your kids are still growing is like shoveling the walk before it stops snowing"

Only 5 days until Disney, and it's time for a cleaning day. The kids have asked me why bother cleaning when we're just going to leave the house for a week anyway? Good question. It made me stop and think.

I think it's because by the time we get home, I know the suitcases will be full of dirty clothes and new trinkets. We always seem to come home with more things than we left with.

The things I am looking forward to accumulating are pamphlets, papers, knowledge, experiences, and memories from the NDSC conference. I'll definitely be packing the camera! We're so excited, and it's hard knowing we have to wait until Thursday to get started.

One of the nicest things about vacation is that I don't have to do so many dishes or laundry. One of the worst parts about vacation is that I have to do the dishes and laundry when we get home! So, we clean. I have to admit, it's an excellent bargaining tool with the kids (and the husband!).

"Get that room clean (or pick up the toys, mow the lawn, take out the trash, etc.) or I'll tell Mickey Mouse! " Even Abigail pitches in to try and help.

So far, it's worked like a charm. :)

"Live and work, but do not forget to play, to have fun in life and really enjoy it"

The countdown to Conference Day continues! I made some t-shirts for our family to wear to the conference and at Disney. Nice, bright colors make it easier to spot the kids or anyone with you :) I made all of us a yellow t-shirt with FCDSN, Rochester, NY

I also put 'my daughter's extra chromosome makes her extra-ordinary' on the back of the adult t-shirts.

The kids are also getting nice, bright green t-shirts that say 'my sister's extra chromosome makes her extra-ordinary' on the front. Abigail's is a little different, and I put a graphic of 3 chromosomes on it.

Someone asked me why I go to the trouble to make the t-shirts. My answer is "because it's fun!" and so that people will see Flower City Down Syndrome Network in print, and also see the region we are from. I'm looking forward to meeting folks from across the country. What a wonderful opportunity!

Now, if I could just find time to get some of these shirts packed....

"Nothing is out of reach. Life is a miracle unfolding."

This is our youngest daughter Abigail, who started us on our quest to learn more about Down syndrome.

At 3 years of age, she is a veritable whirlwind of energy and activity. She is a blessing and an inspiration.

This will be our family's first visit to the National DS Convention, and we're all looking forward to the experience. For my husband and I, we look forward to learning more about Down syndrome and meeting more amazing families.

For our four children, it's more about Disney and meeting Mickey. There will be something for everyone :)

First post! ... for the Flower City Down Syndrome Network in Rochester, NY. Several of our member families are attending this year's National Down Syndrome Congress' annual convention. This year's convention is at the Coronado Resort in Disney World, FL.

We want our members and followers to be part of our experience, even if they can't be there in person. I've created this blog so that they can follow us on our learning journey. We hope you can come along!

Just one week to National Conference and the excitement is mounting! We can't wait to meet all the great families we know will be there, and to learn more about Down syndrome.