Adventures of the NDSC Conference

[Guest guest]

I've been non-stop before, and since and probably won't be able to post again for 2 weeks... both grandma's coming this week, then next week a little vaca to Kuaui!

I don't think we'll ever miss another conference, and even though next year is in Orlando, at Disney World, I think last weekend Sacramento was THE Happiest Place on Earth!

This is going to be LONG, and at the end of this I'm going to tell the story of 's independence this weekend...and the story is a draft of one of the chapters of my 'Who's the Slow Learner' book...in this one 'I'm' the slow learner!

OK, we got there Thursday night and has the set up that would be roommates with Sears, and I would room with Martha...the reservation requested 'adjoining rooms' and they were 'out' of adjoining rooms when we checked in! BUT they upgraded us to the 'Club' level and we had a private door that locked our rooms off from the rest of the hall, so we were adjoining after all!

We went to dinner then the IMAX movie at 8, where promptly began working on his goals for the weekend, "To find a Girlfriend and get a kiss."

He began introducing himself to EVERY girl in the theatre (before the movie began) and asking how old they were....most were over 20, so he kept going till he found somebody more his age....but alas no 'success'.

The next day I will put the details of the morning at the end of this story, but was quite the independent traveler....I went to the pre-conference session taught by Joan Medlin, awesome to meet her, "I See What You Mean" and I learned that when balks I need to provide a visual cue, a visual choice and drawing a quick picture on the spot is an effective tool!

Then the teens went to their 'welcome party' WOW, 250 teens and adults with Down syndrome in one room...I wanted to stay there! It was so cool seeing the older people with DS who were re-connecting with friends they see each year!

I went to a 'Sharing Session' and cheated and went in with the 'moms of 17-20 year olds....Brad Hennifer's mom was the facilitator! I learned a few things about transitions including 'waiver' money that some states have a waiting list for to provide for personal care assistants...independent facilitators, or whatever that state calls them...either agency or parent-hired. I learned a little about some college programs and didn't know it yet, but met 's new 'girlfriend's mother....

and I had a few minutes to run through the booths and the Nigerian DSA had a table with the most incredible necklace for $2.50! I should have bought all of the necklaces, but left them for others to share...and I could not just give her $2.50, I still feel bad about 'donating' only $10!

We met up with Sabatis and met Lindsey after a year of emailing...he gave her the necklace, and they held hands as we walked to the restaurant to beat the rush. They were quite the pair, and later danced together at the teen and adult 'mixer'.

The opening session that night was incredible with the Keynotes 'We're More Alike than Different' Meredith , Lee , Gaffney and Carlene Mattson (not self advocate) presenting their presentations that they did to the Genetics Counselor's Convention earlier this year! Not only were they inspiring, but they educated as well...and when Gaffney said, "There are thousands of people working to make people with Down syndrome's lives better, not to end them." It was powerful.

Carlene said that when they finished their presentations at the convention and walked out, that HALF of the attendees followed them out! MOST HAVE NEVER MET ANYBODY WITH DOWN SYNDROME!!!!!!!!!!! They wanted to meet them and talk to them further....this is a huge movement and I believe our people can make such a great difference in the future of prenatal diagnosis....

AND I GOT TO MEET PATRICIA BOWER! WOW!

OK, Saturday, dropped to his conference, and went to the opening session---Eleanor was awesome, and sounded like a 60's activist!

I introduced myself to her dad afterwards, she was so articulate and eloquent, and made sure we all knew it was HER body and nobody was going to tell her what to do with it! They had some technical difficulties and couldn't get her PowerPoint up, but she handled it with the grace of a professional speaker...actually BETTER than a pro! I truly felt like I was in the presence of greatness!

I then went to the 'Volunteering and Service' session and learned all I needed to know in the first 15 minutes, so skipped over to 'Assisting people with disabilities to control their housing and individual support funding...It was an interesting session and there are SO many ways of funding independent living options it could be mind-boggling....

I wanted to go to the inclusion sessions, but it was too depressing since I would learn of all the things I can't 'DO' at 's school so I didn't....

I went to pick up for lunch and he came out holding hands with the CUTEST girl, Marissa....who lives 8 hours away from us in Northern California (perfect distance for a girlfriend!) He said, "I'm having lunch with HER." I asked if we could all go together, and her mom and I just followed behind...Marissa and . We went into a deli and told her, as he pulled out his wallet, "You can have ANYTHING you want!" He ordered the same thing she did, and he hardly ate---way too smitten...but poor Lindsey. Her family joined us for lunch and she was so bummed out...I told her, "'s a player." and she smiled knowingly.

I asked Marissa how old she was---18, and frequently lies about his age, so I asked her if she knew he was 15, she said, "I don't care, he's cute!"

That afternoon I decided to go to the film festival...two of the 3 films were pretty strong messages that we need to have our adults in some sort of living situation BEFORE we get too old, or too sick...that's all I'll say, they both were tough to watch...one more than the other.

Sunday I went to the Why not College session and was very excited that Latham (director of the UCLA Pathway program) remembered me from a visit a year ago to check out the program...I learned a few new things, and eventually we might be able to get grants for these college programs, but not yet.

I went to the Sequenom panel---they had a table and I went by the booth earlier in the weekend---I met their director of marketing who lives near me. They are planning on distributing NDSC and NDSS materials to their OBs and I offered to speak if they have any classes for OBs on delivering the diagnosis....they were very impressed with the conference, had heard the self-advocates speak and 'seemed' to be sensitive to the 'seek and destroy' message.

---the panel consisted of:

Gammon, Director of Scientific Affairs for Sequenom...who went through a 'layman's version of how the test detects DS so early

Chervenak-MD, Professor, Chairman and Director of Maternal Fetal Medicine of the Dept of OB/GYN at New York Presbyterian Hospital=---and he's also an advisor for Sequenom, AND has some sort of ties to ACOG

on our 'side'

Cifra-Bean Pediatrician

Cambell Brasington, Genetic counselor

(both parents of kids with DS)

and Capone Medical Director of the DS Clinic at Kennedy Krieger

Each had a chance to give their 'introduction' and I would love to get a transcript! Capone and Cifra-Bean both made great arguments that DS is 'treatable' and is a diagnosis compatible with life (unlike some things that are genetic) and 'why' is DS being singled out when the conditions not compatible with life SHOULD be receiving at least equal attention.

This test Sequenom has can also detect sex of the child at 8-10 weeks, but nothing else at this point...so the further question, 'Will insurance companies pay for ADDITIONAL tests for Spina Bifida, etc on TOP of Sequonom’s test since it's pretty much touting the DS claim only."

Further Capone and Cifra-Bean and Brasington pointed out historically the Diagnosis was delivered AFTER birth by a PEDIATRITION and the OBs have NEVER been trained to deliver a diagnosis of DS in their medical training...and the ACOG needs to step up and provide the training if they are going to make the recommendation that every pregnant mother be tested.

It was compelling, Dr. Chervenak kept saying that he was against the seek and destroy mentality and that he has spoken about the ethics regarding prenatal diagnosis and the 'assumption' that the parent would abort for several years.

MANY Parents lined up to the microphones to ask questions---I recommend you get a copy of the CDs from the conference to hear the excellent points being made by the parents--perhaps your local group purchased them?

I thought it ended at 1:30, but it went till 2, but I had to leave at 1:30 so I could meet for lunch:Jeanne Pirkowski

Ianonne

Crawford and Desi McKensie....

Fist I have to say how fun it is to meet my internet friends face to face! Desi, and are BEAUTIFUL!

WEll, everybody was, we were all a little fried by then....and brought a surprise for me.....

a Grandmother, who had brought her 15 year old grandson who has DS...His Mother has DS AND His Father had DS (passed away when the boy was 5)

I could have talked to her for hours, but we had to go! BUMMER! , if you have the whole story, you have to email it to me! She needs to write a book!

----OK, here's 's Adventures in Independence:

Adventures In Independence

This story is about MY education in ’s independence! This summer (2009) on the third day of ’s full-time volunteer job as a Camper in Leadership Training he was ‘excused’ and I was told he could return if he had an aide….basically a child had not listened to him, so got angry…and pushed the child down. I am impressed they would even consider letting him return under any circumstances! But alas with the budget cuts, no aide was to be had, so the piecing of the schedule began.

One of my best friends agreed to pick up at noon each day to take him to the local community center for an afternoon of fun with her son, and other friends. The first day, stayed home that morning and got himself ready, made a lunch, then waited for her to pick him up…the next day he didn’t want to wait till noon…I called him around 11, to remind him she would be there in 1 hour and to be ready. His response, “I’m almost there Mom.”

And so the discussion went, “Almost where?”

“The Community Center.”

“What, are you walking?”

“YEP!”

“What street are you near?”

“I’m almost there!”

“, they don’t open till noon, and it’s only 11 am.”

“But Kristy was going to pick you up at our house, can you walk back home?”

“Nope, I’m almost THERE!?”

click…he hung up on me!

I quickly drove to our neighborhood, and started at the community center driving backwards towards our house…hoping he was going the right way on the TWO MILE walk!

As I turned the corner to enter the busiest street in the journey, there he was! Had his lunchbox and was walking in 80+ degree weather…I decided to spy, instead of picking him up. He turned the correct corner, and began walking with another teen who thought nothing of being there, walking down the street. As they walked down the block they seemed to be having quite an in depth conversation, and at the corner the teen went a different way. pushed the button and waited for the ‘walk’ sign then looked both ways and properly crossed the street! He totally knew where he was going and had the whole situation under control. I picked him up in the parking lot of the community center and took him back home till noon, it was only 11:30 and he had 30 more minutes.

Then a few weeks later we went to Sacramento to the National Down Syndrome Congress Convention! and Sears shared a room, and his mother Martha and I shared a room…we were adjoined. I decided to sign up for a pre-conference session, and so did Martha. and were instructed to stay in the room, room service was ordered to deliver their breakfast at 9 am, then at 10 am my friend Kristi was going to come to get them and take them to her hotel down the street and they would swim with her sons till our pre-conference session ended….and this is where the fun began! There was a break around 9:30, so I called to remind him Kristi would be there in 30 minutes… didn’t answer, so I checked with Kristi, and she said that her son Ben and had talked on the phone and knew she would be there soon…then called me back. I asked, “Are you in your swim trunks yet?” He said, “Yep, and I’m swimming too!”

“Where are you swimming?”

“In our hotel”

“How did you find the pool?”

“The elevator said where it was.”

“Well, stay there, I’ll tell Kristi to pick you up there.”

Then I called Kristi and she was leaving her hotel and said she would go to the pool…..I went back into my pre-conference session and my phone began to vibrate---“” was the caller, so I left the room and answered.

“Mom, the Key won’t work.”

“The key to what?”

“Our room!”

“Aren’t you still at the pool?”

“No, we went back to the room to meet Kristi.”

“Oh, take the key to the desk where we checked in, do you remember that place.”

“Yes.”

“Tell them it stopped working and tell them your room number, and they will give you a new one. What’s the room number?”

“2636”

“That’s right, can you do that?”

“Yes, but is upset.”

“Let me talk to . “Hi , go with down to the first floor, and remember the desk where we checked in last night?”

“Yes.”

“Go there and they will help you.”

“OK.”

And here’s the story Kristi told me later (I called her and told her they would be in the room, not the pool after all---THANK GOD FOR CELL PHONES!!)

Kristi got to the room, and there was , but no …she called , “Where are you?”

“At the hotel.”

“Yes, but where at the hotel are you? I’m at your room.”

“I’m waiting for you!”

“Yes, but ‘where’ are you waiting for me?”

“At the hotel!”

“Are you inside or outside?”

“Outside!”

“OK, stay there, I’ll be right down.”

Poor Kristi, she went downstairs and there was, outside the front door…swim trunks, barefoot, and waiting for her! She had come in through the side door and had not seen him…then she had to convince him he needed shoes to walk the two blocks to her hotel. As they came back inside and passed the front desk the woman behind the desk said, “Excuse me, did you hear what happened?”

Kristi said, “No, what?”

“Well, this young man, and his friend came down, they had locked themselves out of their room, and they had no identification on them, so we had to send Security up to unlock their room, they showed them their identification, and their room keys so Security left them there. I just wanted to make sure everything was alright.”

Kristi, died laughing and said, yes, it is now!

That night was at the dance for the siblings, teens and adults. I went to the reception and when I came back discovered that his ‘date’ Lindsey had left, so I asked him if he wanted to go. THEN I asked him where his camera was! He said he had left it under this particular table…it wasn’t ‘under’ the table at all…so we looked under several tables, and he got upset and before I knew it he had left! He had his room key in the badge holder, and I wasn’t sure where he was so I called him…and a woman answered! She said his phone was on top of a table, along with his wallet AND camera! WELL, it was on TOP of the same table he said he had left it UNDER, she raised her hand so I could find her, then I was scared--- was on the streets of Sacramento—no phone, no wallet!

I went back to the hotel, and THANK GOD, he was in his room…and in bed!

The next night when his date (then Marissa) left I found him on the dance floor sitting down…with his camera=phone in his hand…I asked him ‘what are you doing?’ He answered, very nonchalantly, “Taking pictures of butts.”

OMG!

, Mom to 15, DS, Southern California"People who say it cannot be done should not interrupt those who are doing it!"-------Chas

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html