What a Sunday!

What a great day!  We never want the conference to end.  It's such a great experience and so much FUN!  Here are a few highlights of our morning & afternoon.  I didn't think I'd be able to post, but the finale wrapped up right on time, and we don't need to leave for our flight for another hour and a half.

We started out at the film festival this morning, and (finally) had a chance to see this film.  In all honesty, it moves very slowly, but it does tell a beautiful story.  We had a chance to meet one of the actors with Down syndrome, too!  Three members of our local area participated in this film: Stephen Blum, Race Eberhardt, and Eric Neatrour.  They all did a wonderful job and we're all proud of them!  I grew up in Akron, NY right next to the Reservation, so it was fun to see familiar faces and places during the film.  

Right after Bury My Heart, they also showed the film "Just Like You: Down syndrome", and we were lucky enough to sit right behind miss Rachel, one of the 3 kids from the film.  She is a delightful and bubbly girl, and we had great fun chatting with her and her parents.  She was gracious enough to have her picture taken with us.  Such a sweetheart.  If you have not already seen this video, please do!  You can find it here on YouTube: http://www.youtube.com/watch?v=5M--xOyGUX4  Just to make our day, we received a phone call telling us we had won a copy of the DVD!!!  We're thinking of ways to get this viewed publicly in our area.  

Afterwards, as David attended the D.A.D.S. workshop, I attended a session with information on Apps and iDevices.  It was very informative and the presenter offered lots of titles, recommendations, and tips for maximizing use of your iDevice at home and in school.  There are a few apps that are on sale TODAY (Sunday) only, that she presented.  The titles are: First-Then Task Manager, Flashcards By Me, Sight Words Pro, Bobs Books, and Words That Go.  You can check them out on iTunes, and you can also visit Tracy Churchman's web site for further info at www.tysadventures.com. 

I still haven't worked out how to post a video, but I'll try again.  The grand finale was filled, and again brought me to tears of joy and admiration for all of the self advocates and fellow parents.

So that's this year's conference as we saw it.  We had a wonderful time, made more new friends, met more fabulous people, and generally enjoyed ourselves as we were inspired by self-advocates and professionals alike.  Be sure to follow us and check back for next year's conference.

Did I forget to mention?  Next year's conference is scheduled for July 11-13 in Indianapolis, IN.  Watch the FCDSN FB page or newsletter for when and how to register.  Thanks for following along! :)

Saturday Afternoon

Sorry for the delay... I twisted my ankle (of course, the one I broke a few years ago!), and had to ice it last night so I didn't get to post.

Yesterday afternoon was just as great as the morning.  After lunch, we went to this workshop:

and it was very, very informative and we got lots of great insights.  I'll write more about it for the newsletter, so keep your eyes peeled on your inbox for the next issue :)

We visited the D.A.D.S. booth several times, and got a photo with the Rochester dads that attended this year; David Wiesmore, Jeff Berl, and Eric Bustamante.  They did a lot of talking and reconnected with some long-distance friends.

We also got a photo of the Rochester attendees from this year, all together!  That's a pretty great feat in and of itself.  The conference is a very busy, very large affair, and getting a few folks all together at the same time isn't always easy; but we did it and had some great fun.

Here's a view from our hotel room just before turning in for the night.  It was very beautiful.

We'll be having to check out soon, and we need to take a taxi to the airport shortly after lunch, so I won't be able to post later today.  I'll be sure to get to the tail end of the conference in the next few days to let you know how the finale went.  See you soon!

Quick note, we just got a phone call in our room, telling us we won a copy of the video "Just Like You".  We put our names in the raffle box at their booth yesterday.  Pretty cool!  Gotta go....

6:00 a.m. Denver Time

You read that right.  We were up at 6:00 a.m. to get ready for the day.  This is the first year we purchased the meal plan that you can order when registering for the conference.  The meal plan provides Friday night dinner, Saturday breakfast & lunch, and Sunday breakfast.  We had one dinner in Washington on the meal plan (due to an error of the hotel's at one of their restaurants... they double booked our reservation and we were turned away), and it was wonderful.  The food was excellent.

I'm sure it varies from place to place.  It is very convenient to have your meal ready, on premises, timed between the workshops.  On the other hand, it hasn't been great food here at this hotel.  Don't get me wrong, it's ok for pre-fab, banquet-style food, but not what we'd call great.  Part of that is because I can't eat tomato, and there have been tomatoes in & on just about everything, except breakfast.

Although I'm sure you're fascinated by my culinary issues, you probably want to hear about the sessions, right?  Ok!  Here's one idea: you can access the conference sessions for 1 year at just $45.  Visit the NDSC web site for details.  I think you can still register.....

As usual, David and I used a "divide and conquer" strategy so that we can cover more topics and get more information and use out of the conference.  I attended this one and was really, really impressed and got a whole lot of great info.  I was so inspired I went and bought her books after the session.  Yeah, she was that good, and I got great tips and ideas from all of the other parents attending, too.

The presenter told us they had the same subject last year, but combined girl & boy.  It was so huge they split it this year.  Today was for girls, tomorrow is for boys.  

David attended this workshop and was very excited and raring to go afterwards, and has ideas and contact info on how to support our own local efforts.  I'm sure he'll be sharing it with the Board, and membership in general, soon or on FB.

Now here's some fun photos for the day.  This is the view out of the window in the hall just outside our room:

... and this is for my Ky.  Since this is a descriptive label, as well as a brand name, does it count as a skittle? :)

We'll be heading off for the afternoon sessions soon.  There is an awards banquet this evening, as well as another dance.  We did not purchase tickets for the awards banquet, which honors self-advocates, and also other advocates in the field of disabilities, and Down syndrome in particular, for lifelong commitment and achievements.  There will also be presentations from self-advocates, and a series of films, including Bury My Heart With Tonawanda and others.

Check back later for further updates.  Gotta run!

My Favorite Part

I've never made a secret out of the fact that my favorite part of the NDSC conference is the dance party.  Yes, I get tons of great info and education about Ds by attending the workshops.  Yes, I absolutely love meeting all of the amazing parents, grandparents, and siblings of people with Ds from all over the country.  Yes, I love seeing the beautiful almond eyes, sweet grins, and love shared all around us.... but... the dance totally entrances me.  I stand amidst the music & people and just soak it all in.  Babies with Ds, toddlers, tweens, teens, boyfriends & girlfriends, couples, adults; all having a blast.

I think what enthralls me so much is that when I look around, I see families, siblings, grandparents, parents, and friends of people with Ds abandoning all thoughts of pretension, and enjoying themselves immensely.  As a child (and adult), I have never been comfortable in social situations.  I am not an extrovert.  To walk into a room and just feel totally at home and comfortable just having a blast without worrying about judgement or what anyone might think brings me true happiness.

Maybe this is what I find so amazing about our daughter.  It's so easy to see why so many people call that 47th chromosome the "love gene".  My daughter brings out the best in me.  She makes me a better person.  She brings me true happiness, and accepts me for who I am, flaws and all.

This year's theme was "red carpet affair".  Couples would enter along the red carpet in style, and have their pictures taken.  Everyone was having a great time.

I have a video, but I don't know how to post it.  If I figure it out, I'll be sure to add it!  Please remember that I was taking this from my little hand-held camera, and I am not a professional!  Most of the time, the lights were lower, but they turned them up for this song, and a few others.  It did make it easier to view the video!

We. Had. A. Blast!  I always leave the dance with a few tears, so happy my daughter has a community that will love her and let her be who she is.

Then, we totally crashed from having been up for 21 hours straight and slept really well until 6:00 a.m. Denver time :)

So Much to See

Once we found our way around and checked in, we headed for lunch :), then we headed off to visit the Vendor's Exhibition.  We found tons of stuff, as usual, and picked up lots of good info.  Here are just a few...

The "Strider" bike.  Notice anything unusual?  It has no pedals.  Kids sit and walk it forward to learn balance and have fun.  Sort of like a big kids' ride-on.

The Buddy Cruise is giving away a cruise to one lucky person (over 16) with Ds.  You can check out their web site.  I think a few of our members might recognize one of these volunteers :)

GiGi's Playhouse had lots of info and free calendars.  You know I got one, right?

We met Connie and her daughters Hannah & Theresa.  Connie designed Dolls for Downs.  They're beautifully crafted 18-inch  dolls.  A fantastic new product/business.

(Abigail is getting one for her birthday, but don't tell her, it's a surprise!)

We met George Estreich, author of The Shape of the Eye.  

I'm going back tomorrow to buy a signed copy.

Specs 4 Us was here again this year, selling their eyeglass frames to fit the 

beautiful faces of Down syndrome.

Downs Designs is a great business, selling specially designed jeans that actually fit our kids!  They are a wonderful group of people, and have a great product.

There were so many more great products and services.  There were books, and camps, and artists, and nutritionists, and toys, and so much more.  I didn't take a picture of every booth, but I think you get the idea.  Next post... let's dance!

Convention Center

It's been a very long day... we're coming up on 21 hours awake, so please bear with me if I get a little punchy :)  The convention this year is at the Hyatt Regency Downtown in Denver.  The center is just across the street from the hotel, and it's huge!  The weather is just beautiful; sunny and in the 70's.  Very comfortable.

They even have a really big mascot ;)  This blue bear is everywhere you look... on shirts, made into statues, as keychains, etc.  My oldest daughter would LOVE it (she's a big fan of bears).

Inside, it's easy to find your way to the registration area.  They have the tables set up alphabetically.  This year, we received a tote bag, flash drive with the compendium, a t-shirt, and a conference planner.

We had a chance to meet up briefly with some friends from the FCDSN at lunch time and say a quick hello before heading to the Convention Center for some parent "sharing sessions".  It might sound like a coffee hour, but really it was quite informative.  We've always found that the best experts are other parents that are in similar situations, or that have already experienced a problem.  They can give great practical advice and give you ideas that doctors and professionals just don't always think of.

I attended the "for Moms only" session, and David (logically) attended the "for Dads only" group.  Each group allows every attendee to state an issue that they are dealing with.  Each group is further focused by age.  (For instance, there was a 0-3 group, 4-8, 9-12, etc.  You attend whatever group your child is in.) The moderator then opens the discussion to everyone to get advice and tips on how to deal with it.  We covered a lot of topics in a short 2 hours, and didn't even cover everything!  The hot topics in this session were challenging behaviors, communication struggles, elopement (running away), feeding issues, educational expectations, potty training, and creating meaningful friendships with peers.  

I'll fill you in on the Vendor Hall a bit later... we're getting ready to go down to the dance.  Always a great time!

A Mile High

Just a quick note...we made it to Denver!  We began our day at 3:30 a.m. (and I am SO not a morning person!), took 2 plane rides, and lost 2 hours due to the time difference, as well.  It is going to be a very long day.  We've already run into a few families attending the conference on the elevator up to our room.  It seems like dinner time, but we'll be heading out for some lunch and a stop at the Registration Table to pick up our compendium and other conference materials.  Once we take a look around to find out where everything is, we'll post some photos.  See you then!

Here's a picture for our eldest.... :)

Crunch, Crunch & Flat Stanley

Can you hear it?  That's the sound of time ticking away and laughing at me for not even beginning to pack yet!  Yep, it's crunch time.

I've already run a list of small errands this morning, and stocked the refrigerator and cupboards for the kids and Grama & Aunt Wendy.  I've filled up the van with gas so they can get to wherever they need to be this coming week.  I've contacted the school where Abbie is attending ESY.  I've caught up on all of the laundry (a notable achievement in and of itself!) and David has taken care of all the garbage.  I've made my annual t-shirts for the conference.  David has put all the paperwork in order for our flights, hotels, and tickets.  Let's see.... what else?

This year's batch of shirts.  The latin reads "Everything that comes in threes is perfect", and yes, I realize it is spelled incorrectly, which I noticed AFTER I had printed and ironed it on.  Yes, me, an editor, totally failed at editing this time around.  Oops.

I can't change it now!  I'll get another shirt when I get home and fix my error!

Flat Stanley!

What's that, you say?  Flat Stanley?  What the....?!  Abigail's teacher sent home a "project" due the end of July (when we arrive home, of course).  Each child has a colored cut-out of the book character Flat Stanley.  Not my favorite choice of books for kids, but it's what the teacher is working with.  Anyway, we're supposed to mail F.S. to all of the fabulous people we know out-of-state so that they can then take photos and write about the adventures F.S. has with them, (because of course I know tons of people out of state that are willing to do a children's project and write all about it!) and then they get to send them back on time.  I won't go into it, but thank goodness I have a (very best!) friend out-of-state that is willing to do this for us.

...but wait; there's more! There are TWO Flat Stanley's?  We're supposed to do this with 2 copies of F.S., so the second will be traveling with us to Denver for the Ds Conference and to Disney.  How's that for adventure?  Ha!  I just hope I remember to get a picture of him amidst all the awesomeness of the conference.

It seems like I'm forgetting something.... it will come to me... oh, yeah!  I have to pack!

Be sure to check back to see what we're up to this weekend at the conference!

Inspiration

The days have disappeared so quickly!  Just a few days left until the conference.  I have met, over the past 6 years, many new families, and families with kids that are school age, that have never attended National.  I often get an odd expression and a "maybe some day we'll do that" if I mention attending.

I totally get it.  I was there.  I was one of those parents asking "why would I do that?", and "why spend the money?", and "what good would it do?".  I'd always been curious about it, and sort of wanted to go... so we  took the plunge.  We bravely attended National Conference.  We wanted to learn how to better help and support our youngest child.

We were inspired to attend..

Now, when I meet new families, and families of kids with Ds of ANY age, I can't express how much I would like for them to have the opportunity to experience this conference.  I can't help smiling when I talk about it.  I can't put into words the feeling I get when I see all of the beautiful people and children with Ds there, and know that my daughter's future can be just as bright and positive.

The first year we went, I had broken my ankle and was in a wheelchair.  One young man was very concerned and stopped us in the hallway to ask if there was anything he could do.  I told him I was alright, and that no, it didn't hurt much anymore.  He thought for a moment and said "well, if you need anything, you come and see me and I'll take care of you!".  If I could have, I would have jumped up and given him a hug.


The workshops (or 'sessions') range in topic from medical issues, learning problems & strategies, schooling & inclusion, advocacy, nonprofit support, testimonials, D.A.D.S., products & books..... the list continues.  There were over 60 sessions last year, I think.  I chose what topics and areas of concern I dealt with on a daily basis.  My husband chose those topics he deals with.

We were inspired to return.

I feel like I'm rambling, but I'm really trying to just get the point across that attending National Conference isn't just for fun (although we've always had a blast), it isn't just for hard core advocates (though there are some informative sessions on legal issues), it isn't just for parents (but there's lots of info on support groups), it isn't just for educators & professionals in the field (although there are a lot of workshops on learning strategies).

It is for all of you, and for everyone that knows and loves someone with Down syndrome.  The expense is worth it.  Check with your local area Ds support network to see if they offer any type of financial assitance.  We are very fortunate that our area Network offers reimbursement programs to help families defray some of the cost of attending National.  

We never would have dreamed of attending something like this, if it hadn't been for a little 5 lb, 6 oz. bit of inspiration that was born 6 years ago.  We would travel to the ends of the earth for any of our kids.  We have the opportunity to learn and support our youngest by attending National, so we do.  I encourage you to give it a try some year, if you haven't already.

We'll see you there!

Bus Loads of B&S

There's lots of talk and information about the individual workshops and sessions at the NDSC conference, so I thought I'd take a minute to tell you about the Brother/Sister conference instead (you knew that's what I meant, right?!)

Last year we attended the conference in Washington, DC.  We took our 4 children with us.  We just couldn't pass up the opportunity to let them see our capital.  We also signed them up for the Brother & Sister conference.  We weren't quite sure what to expect, but they enjoyed themselves a LOT and couldn't wait to tell us what they did.

There were sessions for the kids to break into groups and chat about their own experiences and/or concerns they have with their sibling that has Down syndrome.  Sometimes, it seems like that kid just gets ALL the attention, doesn't it?  Older kids sometimes feel insecure about how to stand up for themselves and their sibling with Ds in tough situations at school or on the playground.  The Brother & Sister conference gave the kids a chance to talk with their peers and eased their feelings of isolation.  Although we know lots of families with children that have Ds, we don't seem to have many other sibling groups with kids the same ages as ours.

Abbie's brothers & sister

The Brother & Sisters conference was run like a camp, with leaders and counselors with the kids every step of the way.  Our oldest son has Autism, and the counselors were patient and handled things well when he became overwhelmed and needed a break.  We were impressed and thankful for their cool heads and understanding.  Each child is given a numbered ticket, and throughout the day tickets are randomly drawn for prizes.  Our younger son was thrilled to get a pair of Ear Candy head phones.  The kids also got drawstring back packs with the "Rock the Cap" NDSC logo.

It's not all workshops and talking, though!  The Brothers & Sisters got cool t-shirts, and even got a field trip to the Spy Museum (our kids LOVED it!).  I was kind of jealous; it sounded pretty cool.  There were 2 buses full of Brothers & Sisters. They were served excellent meals (better than we had, sometimes!) and were safely and productively occupied while we attended the grown-up workshops.  Yes, it was well worth the additional expense to have them attend.

The last night in Washington, they tried something new for the conference, and had a good bye, send-off gathering.  During that last goodbye, they invited all the older kids & teens with Ds and the brothers and sisters to join in an impromptu performance of a popular song.  All the kids got up on 'stage' and sang and did the motions and had a blast. It was a wonderful experience for our kids to feel involved and understood.

Counting Down the Days

It's almost time!  We can start counting the time in days, now, until the conference.  I've been avoiding the calendar, trying not to look, because it's seemed so far away.  Not anymore!

This will be the fourth conference we've attended since having Abigail.  The first two years, we were hesitant and (in all honesty) overwhelmed with the job of getting into our new groove with 4 kids, and 2 with different abilities.  Jakob was diagnosed when Abbie was 1, and although for years we had suspected something was up, it was still a jolt and an adjustment dealing with everything.

Once we gathered ourselves together, we were ready to take the plunge and join in this amazing community. We were totally amazed and inspired at our first conference experience at Walt Disney World in Florida.  We took the kids with us (and my mother-in-law for some extra assistance with kid-watching), and drove all the way there from our home here in western NY state.  It was a long drive, but well worth every moment.  Following that conference, we extended our stay and took the kids to the Disney World parks.

The second year, we ventured out alone (gasp!).  Yes, without children, we attended the conference in San Antonio and were just as impressed with all of the wonderful people and workshops.  "Just Dance!" brought on a bout of tears.... tears of joy and hope for our daughter's future.

Last year, we were off to Washington, DC, and again we took the children with us (and my MIL) on the long drive.  Again, it was well worth the effort.  Last year, we had the older 3 signed up for the Brothers and Sisters conference, and it was a great experience for them all.  Our oldest has autism, but the conference leaders were patient and handled things calmly.  Abigail also had some time in the Kids' Camp and had a blast making new friends and playing.

This year, we once again are stepping out by ourselves.  This time is a little different, though.  For the first time in 15 years, since we had our first child, we are extending our stay an additional week.  (Aaaahhh!)  Yes, we will be without our children for the very first time for a full 10 days.  I honestly do not know how I'm going to manage.  It will surely feel strange.  However, it is also our 20th anniversary, and we had an offer from my mother and one of my sisters to come and stay with the kids, so we're taking the plunge and celebrating.  Following the conference, we'll be flying to FL to stay at Disney for the week.  I'm both excited and terrified at leaving the kids for that long.

Thank goodness we have Skype.

I am getting very excited about the conference, and about meeting some people in person, hopefully, that have become online friends.  I can't wait for the dance party, and I'm already trying to decide what topics we'll look for this year.  We usually attend sessions individually so that we can cover more ground.  We'll keep you posted!

T

The flights are booked (as are the babysitters)!