THE CONFERENCE WAS SPECTACULAR!!!!!!

[Jackie]

This was probably our 15th conference and it was ABSOLUTELY the best ever!!!! Everyone I met from KC told me that MB was totally awesome...and I agree. In fact EVERYONE I met from the KC group was fantastic.

It was really fun for me to finally put faces to names from UNO. I knew A and Susan...but don't think I had met anyone else before. I have only met the "gamblers" in the group when we went to Vegas.

I feel a bit bad because I was also meeting people from the teens and adult group...and old friends from past conferences. Almost too many friends to get in a quality visit with anyone.

Now ....where was MY suite!!! ;D. I managed to get rid of one handicapped room so that Katie and Em wouldn't have to share a bed...and after one night in ours....when the shower which is for a roll in wheelchair flooded the bathroom floor...managed to ditch the other. But... much to Emily's dismay...it connected with their room.

I was also interested in sort of following Katie around as she enjoyed her first conference as an Adult. That took up a lot of our time as well.

It was also a new experience for me because for a number of years we have more or less checked in and Emily has gone her own way...but this year she hung out a lot with Katie...and I think from what Katie has said...felt we were a bit too much in her face...LOL.

I think this is one of the best Y and A events they have ever had too. It was well organized and their time was filled to the max.

I got to the Uno party late because our sharing session was long and it was rude to leave early ...although we finally did!!! That was a bummer because people started leaving before we did...but did run into some unexpected old friends...like Judi Grossman with the twins who used to post here. I had no idea that MB and her wonderful hubby were treating us until we tried to pay our bill at the end. What a terrific surprise.

I like to have Ed come with me...but really enjoy coming alone more I think cuz it gives me a bit more freedom. We didn't go to all the sessions we would have liked to...because some of them were quite a hike and although they later added a shuttle to get there...it had not happened when the ones we wanted took place.

I did attend Ann Turnbull's info gathering session on her on line families project...which I was already a participant in...and loved the talk on THE MISSION PROJECT which is a private program that some parents in KC have set up to provide independent living and a social life for their kids.

Ed was really fascinated with the Stanford mouse model program and plans to communicate with them about it.

I also liked the final keynote speaker on Sunday who addressed the issue of prenatal testing. I liked her reminder that our mission is not to make our kids "normal" but the make them.....themselves...maximize THEIR OWN potential.

Since Emily is older I really loved seeing, talking to and laughing with so many of the adults with down syndrome that were there
We have gotten to know quite a few of them through the years and its fun to see them bloom.

And of course there are always those parents who have DONE IT ALL...beaten the odds in their minds...have the BEST AND BRIGHTEST there...LOL. But this year it didn't make me as angry as it usually does...I think I had a bit more of an "oh well" attitude about it...LOL.

I think Katie was totally hooked...and I bet she joins us here. She was really complimentary about you guys...said she REALLY enjoyed talking to you at the dances and all...and she really is close to many of you in age.

We had a few tense moments before the banquet when we discovered that the skirt we had bought Emily 2 months before wouldn't stay up due to her initial wt loss...but...fortunately I still had a cleaners tag on a sweater with a safety pin in it...LOL

It was fun to see Susan's Emily come alive as the weekend went on...she seemed to have several admiring young men following her around, too. She is such a pretty young woman.

We just got home last night after going to visit Eds parents in Lawrence...his mom is not doing well so we wanted to make a stop there since we were in the area.

I am sure I will think of more to post when I finish unpacking my bags.

Oh YES MB...when you read here...we DID make it to Winsteads for my favorite burger and eating experience in KC....for those of you who don't remember...I was born in KC...spent all my summers there, went to KU, and Ed went to med school there for 7 yrs...so its my REAL home...despite the fact I have lived in Texas off and on now for over 40 years.


Jackie

[Pat]

Where's MB's run down?? ;D
I want to know if your on vacation...Having a home makeover after your guests left...or Just trying to recover.
Pat

[mollysmomma]

I'll lay money on the recovery....She was in LABOR for 4 DAYS! and man...she delivered PERFECTLY! if there was a hitch...i never saw it!

[CC]

Ditto Pat Pat

Hope you are getting some well earned rest MB and then come here and post up

CC ~

[Jessie]

Um . . . so where was I when you guys were drinking margaritas in the pool???!!!!!

We had a great time. The conference was wonderful. MB and her group did a spectacular job. Thanks MB for everything, including dinner.

THANK YOU to Laura and A., who have thusfar not mentioned our dinner on Saturday night. LOL

Ok, so I guess we can tell one story about that dinner. Jason decided to zero in on an older gentleman that was sitting at the bar. He went up to him, shook his hand and eventually hugged him (I know, I know, not appropriate). Anyway, the man was so touched by Jason that he had the restaurant give Jason 5 t-shirts. He told Laura that Jason really touched his heart. Awww, it really was a sweet moment.

THANK YOU to Connie & Susan, who VOLUNTEERED to have 4 teens ride with them from A.'s house in STL to KC, Jason included. THANK GOD that he was a good boy. He didn't want to leave Susan's side once we got to the hotel, but I guess he knows a good person when he meets one!!

This was Jason's first conference and he did ok with the Youth & Self-Advocate program. He tried to leave early the first day, but they called us right away to pick him up. He didn't have a chance of escaping unnoticed!! I think next year he will enjoy it even more because now he will know what to expect. Unfortunately, his lack of speaking well hinders him really socializing with people, but I think it was really good for him to experience that conference.

Brian & I agreed this conference was better than the NDSS conference we attended simply because there were so many people with Ds there. It was very family oriented. There were soooooo many beautiful babies!!! However, he has no desire to go to Boston next year (simply because of the location, not for any other reason). He said I could go by myself, maybe travel with Laura and Robin, so we'll see. I would really like for Jason to go again, so Robin, if you decide to take your boys next year, I'll bring Jason with me.

Only complaint I had the whole time was having to lug strollers up and down those dang stairs that connected the hotel lobby to the retail area!

So . . . next year being it will be in Boston, we are also going to see CC, Cbean and Bob, correct?!!!!


Jessie

[Jackie]

Have to confess that Katie talked Em into leaving the Y &A early on Saturday, too. They didn't really ask MY opinion (I would probably have opted for her to stay the course...LOL...mom in me) and she is really NOT ready to parade around in a swim suit at this time...but...sibling influence and the fact her friend Chris was also cutting out...won. Em has loved going on cruises so I think the idea of drinks in and around the pool sounded great to her! Her adult life is quite full of instruction all the time so this was a pleasant escape.

Chris is a riot...fun to be around (glad he isn't mine to keep up with). Katie said when they left the pool he had his camera and was getting pretty close to the bikinis on the pool chairs... ;D Ran into his mom and saw her trotting to the pool after Katie told her.

Did any of you ever make it to Jack Stack to eat? That was sooooo good.

Jackie

[Emilysmom]

ROFL Jackie!!! We were all at the pool while Emily and Chris were swimming, and giggled as we saw him photographing all the bikini-clad girls.
What did Katie enjoy most? I totally enjoyed meeting her and hanging out with her a bit at the mixer on Friday. I'd give my right arm (or lol maybe my right knee??) to have a sister like her in Emily's life!!!

Susan

[Jessie]

We really wanted to go to Jack Stack's but they don't take reservations. So, Brian spoke to the concierge to recommend a good place to eat . . . they recommended Smokin' Joes. OMG you guys, we pulled up and we're like, "are they even open". Duct tape across the front window in what looked to be an old auto shop was not very enticing. Wait, it was downright scary. Me and Laura waited in the car while Brian checked it out. He came back and said, "No way". I asked him just today what it was that made him not want to eat there (besides how the outside looked). He said it stunk, there were flies everywhere and the girl that worked there had no teeth and was covered in tatoos. LOL

We went to Hereford House and had some good steaks. Miss Ellie was in rare form that night, but the dinner was good!



Jessie

[CC]

Jessie~

ROFLOLOL on the description of "Smokin Joe's"
YIKES LOLOL

Glad you found a better place to eat

CC ~

[Jackie]

Katie enjoyed it all...I think she was very torn between following Emily around and seeing meeting others her age with DS...and going to some workshops. She has told me a number of times she really liked meeting y'all and wishes she had had more time to visit.

She also enjoyed The Mission Project workshop ... the family planned community right there in Mission KS for adults with DS to live independently.

The interesting thing is...that as recently as 5 years ago I don't think Katie would have ever been this comfortable being around so many others with disabilities. She was always wonderful with Em and her friends...but stayed away from larger gatherings.

Since Emily has come into her life full force...Katie has come full circle and it was obvious she was enjoying the company of those with DS more than those of us without it...LOL. We did get her to join us the last hour of the dance up in the bar of Bentons...but...she was anxious to get back down in time for the last dance.

Another funny about Chris. After the banquet (he sat with us)...Katie turned to him and Emily and said...you guys better get on down to the dance...you are missing it. And...Chris turns to her and says...I am about thru with Emily...I want to dance with YOU , Katie ;D ;D ;D

This is the same Chris who made the Hallmark commercial five years ago...LOL.

There was also some talk the last day about having a track for adult siblings...who are in a position like Katie...or even older and are facing the prospect of acceptiing responsibility for a brother or sister. Also kids in college would be included.

Jackie