Re: Re: NDSC Conference--Comments

[Guest guest]

Aloha, Desi! I am so glad you got to see & hear Dr. Capone. He is

one of our saving graces in this group!! I am also thrilled you were able

to attend all the workshops you did and got so much out of them!

Liz

On Thu, Aug 6, 2009 at 3:16 PM, Desi McKenzie wrote:

>

>

> Aloha to ALL!

>

> OMG! It was the first time ever attending an NDSC Conference for and

> I- and we such had a wonderful time! Sadly, we could not afford to bring

> Aubrey, 11 and her PA-(our first separation for more than one day)

> so she stayed back in Hawai'i with her Godmother and then her Dad...(had so

> much fun with her own planned itinerary-even won an AREA FIRST in Special

> Olympics soccer individual drills on Sat!)

>

> We were very surprised as it appears that no one else from Hawai'i came out

> especially since Cali is a lot closer than Boston, MA! Maybe one day the

> Conference will be held in HAWAI'I?!?!?!?!?!

>

> We spent most of the day on Friday in Libby Kumin's speech workshop...

> (I bought her most recent book for a steal and hauled it back in a newly

> purchased carry-on bag for a bunch of " goodies " we brought back to Hawai'i)

> Most profound discovery is that it appears that Aubrey may also have Apraxia

> and has not been diagnosed yet so as early as yesterday I found out who

> is best ST to diagnose her here and will be contacting her very soon!

>

> Especially enjoyed the Mothers Discussion (ages 9-12) on Friday

> afternoon...met a lot of mommies who walk in the same shoes, wanting their

> children to make meaningful friendships, self-talk and hide things a little

> less(!) and that is where, ironically, Aubrey's Mommy made a few brand new

> awesome friends herself!

>

> At the same time (14) attended the " get acquainted session " for her

> Siblings Conference. Since she was a bit exhausted from a week of band camp

> prior, we decided to rest up and missed Friday evening...Ash thoroughly

> enjoyed the Sibling's Conference and her highlight was meeting a couple of

> the volunteer junior leaders who had moved away from Hawai'i and used to

> attend the Kamehameha Schools where she will be a Freshman in the Fall...she

> is enjoying viewing daily since her return-her new Facebook Friends (fellow

> sibs) on-line!!! I notice a SIGNIFICANT difference in how much more

> affectionately and postively she treats her little sister since our return!

> MAHALOS RYAN, and I look forward to seeing your handsome face at PAC RIM

> next year!

>

> I was really looking forward to Saturday morning as I have found Miss

> Eleanor 's (21+, ds?!) writings shared by her Dad- on this list

> very moving...so----Saturday morning I walked right up to her waiting to

> present in the front row and introduced myself and how much I was looking

> forward to hearing her-the ROCK STAR! speak and to " break a leg! " She did

> not disappoint-INSPIRATIONAL!!!!!!!!!! and I were rolling laughing in

> the hotel room later as I recorded her speech! " HOT DATES! " and " FREE OUR

> PEOPLE " are phrases that I never thought I would hear out of the mouth (let

> alone so CLEARLY!) of one of our " special babes! " Way to go Eleanor!!!!!!!!!

> I will NEVER forget your presentation and will draw back upon it for

> strength for years to come!

>

> An unexpected delight that preceded her was rio Marin! I found myself

> in tears listening to her as I could identify with so much of what she

> shared in her journey as a mommy of a child with Down Syndrome...(What was

> especially cute, was that day I was wearing a red blouse similar to hers

> thus several people complimented ME (I guess we look a lot alike!) on my

> speech that morning-BUT that began some really interesting exchanges. Thank

> you rio from your " mini-me! " )

>

> A few moments later, I could not believe that I was sitting in the very

> same room with another ROCK STAR in my daughter's need's book-the one and

> only-Dr. Capone! Being that Aubrey was recently diagnosed PDDNOS,

> hearing him speak was our primary highly-motivating force for our presence

> at the conference this year...so spent the whole day in his workshops...I am

> still reeling from all of the information he shared, all of the bells he set

> off in my head that got me to think more productively-about how to get

> Aubrey the help she needs. What I will treasure the most from him is his

> realistic advice-to accept the complexity of the multiple diagnosis with

> grace, and that I definitely should indulge in a glass of wine every once in

> a while! Looking forward to my dream of having him present in Hawai'i very,

> very soon since he agreed to do so!!!!!!!

>

> The banquet on Saturday evening was so much fun! It was so well attended

> and the food was great! Enjoyed the awards presentation-(What do Safeway

> Employers call our children when they work for their

> company?- " EMPLOYEES!...NOW GET BACK TO WORK!!! " ) and the company at our

> table(!)... and post-dinner speaking with our new friends (Leilani's Dad and

> Mom) who is a pastor of a toddler with DS and is now offering our family

> SPIRITUAL SUPPORT!!! I cannot wait 'til the day I see my own daughter

> dancing to MJ's music on the dance floor with everyone else! Aubrey is one

> heck of a dancer! I missed her a lot that evening...(Oh yes, and where

> was ARNOLD?!?!?! or at least a rep from his office if just for a moment or

> two? Hmm?)

>

> On Sunday morning, I happily learned that there really IS hope for meds to

> reduce the symptoms of the highly feared Alzheimer's disease in our adult

> population in the future! The first workshop we attended was another highly

> anticipated session about teaching children with DS to read with Sue Buckley

> and which was very informative...I find myself much more

> POSITIVE already when working with Aubrey on her sight word vocabulary as

> she waits the bus each morning! I happily shared their downsed website

> resources (Yay! There's now a downsed USA!) with Aubrey's SPED teacher whom

> I also commended for ALREADY employing a lot of their ideas in her

> classroom!

>

> The last workshop I attended was the Safe Life Project workshop and am

> thrilled to say that an agency here in Hawai'i is already looking to

> purchase their entire curriculum to use to enhance the Community Based

> Instruction training of many of our young people with disabilities here in

> Hawai'i!

>

> I spent most of the weekend perusing nametags to see if any more of my

> listmates here were there to meet in person...on Sunday afternoon, I FINALLY

> got to meet the infamous SEAN MCELWEE (looks like Zac Efron!!! and is even

> more charming!) and his Mom for a few minutes...if only our paths had

> been able to cross sooner...it was great to put a face to my LISTSERV

> buddies-and NANCY, too whom I met on the Super Shuttle on the way from the

> airport to our hotel!!!

>

> and I ended our exciting journey with a late lunch at the local Hard

> Rock Cafe and a trip to the Westridge (?) Mall (we HAD to get soaps and

> sprays from Bath and Body Works-no stores yet in Hawai'i to take back to

> friends) and a lovely stroll in Old Sacramento where we picked up little

> gifts for our friends who helped with Aubrey!

>

> We were anxious to get back home to Aubrey (Hawaiian Air flights both ways

> were terrific btway) and the very next morning went to Aubrey's school to

> share with Aubrey's Teachers and Principal! He was so excited to hear about

> our experience at the conference and cannot wait until the CDs come in to

> support the Compendium the school purchased!

>

> All in all I would say we had a GRRRRRRRRRRRREAT experience-don't you

> think?! If only I could afford to make it to Orlando...hope the powers that

> be rotate back to the West Coast again soon! I MUA! (Go forward!)

>

> Hoping to hear back from a lot of you soon!

>

> Malama pono!

> Desi, and Aubrey McKenzie

> Mililani, 'Oahu, Hawai'i

>

> I sure hope there's not too many extra characters in this post and that you

> enjoyed the read PATRICIA!

>

>

>

> > From: MICHAEL BAILEY <mtbclarion@... <mtbclarion%40COMCAST.NET>>

> > Subject: Re: NDSC Conference--Comments?

> > To: DOWN-SYN@... <DOWN-SYN%40LISTSERV.NODAK.EDU>

> > Date: Thursday, August 6, 2009, 6:51 AM

> > Setting aside Eleanor's speech (I

> > passed your remarks on the her Mark - =

> > thank you) the two impressions

> > I had from Sacramento are that I don't recall ever being in

> > a group that =

> > large where everyone looked happy.

> > Perhaps it was the example of all the people with Down

> > Syndrome.

> >

> > The other is networking. 15 years ago a young couple had

> > just arrived in =

> > Portland and knew no one.=20

> > Within a few weeks they had their first child, a baby boy

> > with Down =

> > Syndrome. Odd circumcumstance lead

> > them to me within a few hours of birth and I went to

> > hospital to meet =

> > them and their son. They were far from

> > home and family and naturally scared on the label. I got to

> > be the first =

> > person to tell them good things and congratulate

> > them. That nice relationship continued for another couple

> > years when =

> > they moved to Vermont.

> >

> > They were at the conference along with their now 15 year

> > old and very =

> > handsome son. It was really a thrill to see him.

> > And them. That alone made the trip.

> >

> > I did attend some sessions. Not the ones you ask about

> > Mark. Sorry to =

> > say. They were all fine. But what I really enjoyed

> > was seeing so many people with Down syndrome of all ages

> > and getting to =

> > talk to so many other parents.

> >

> > Definitely worth the effort to be there and hopefully there

> > are more in =

> > my future.

> >

> >

> > T.

> >

> > NDSC Conference--Comments?

> >

> >

> > I'd be interested in hearing from those who attended the

> > NDSC Conference

> > this past weekend. The conference started great with

> > fellow list-serv

> > member 's daughter concluding the morning

> > session in a

> > rousing fashion. While there were some technical

> > difficulties at first

> > with her slides, Eleanor not only overcame such annoyances,

> > but, as the

> > person sitting next to me commented, " she seems nonplussed

> > by the whole

> > thing; if it were me, I'd be really flustered. "

> >

> > I was only able to attend on Saturday. I'd like to

> > hear about what

> > sessions were attended and what good information was

> > shared. I'm

> > particularly interested in hearing about the Sequenom

> > breakout on

> > Sunday.

> >

> > Mark Leach

> > Louisville, KY, dad to 5 y/o daughter w/T21

> >

>

>

>

--

“When we long for life without difficulties, remind us that oaks grow strong

in contrary winds and diamonds are made under pressure.-Author Unknown

" Knowing trees, I understand the meaning of patience. Knowing grass, I can

understand persistence. "

- Hal Borland

[Guest guest]

He's pretty to good to look at, too!

Desi

> >

> > > From: MICHAEL BAILEY <mtbclarion@...

> <mtbclarion%40COMCAST.NET>>

> > > Subject: Re: NDSC Conference--Comments?

> > > To: DOWN-SYN@...

> <DOWN-SYN%40LISTSERV.NODAK.EDU>

> > > Date: Thursday, August 6, 2009, 6:51 AM

> > > Setting aside Eleanor's speech (I

> > > passed your remarks on the her Mark - =

> > > thank you) the two impressions

> > > I had from Sacramento are that I don't recall

> ever being in

> > > a group that =

> > > large where everyone looked happy.

> > > Perhaps it was the example of all the people with

> Down

> > > Syndrome.

> > >

> > > The other is networking. 15 years ago a young

> couple had

> > > just arrived in =

> > > Portland and knew no one.=20

> > > Within a few weeks they had their first child, a

> baby boy

> > > with Down =

> > > Syndrome. Odd circumcumstance lead

> > > them to me within a few hours of birth and I went

> to

> > > hospital to meet =

> > > them and their son. They were far from

> > > home and family and naturally scared on the

> label. I got to

> > > be the first =

> > > person to tell them good things and congratulate

> > > them. That nice relationship continued for

> another couple

> > > years when =

> > > they moved to Vermont.

> > >

> > > They were at the conference along with their now

> 15 year

> > > old and very =

> > > handsome son. It was really a thrill to see him.

> > > And them. That alone made the trip.

> > >

> > > I did attend some sessions. Not the ones you ask

> about

> > > Mark. Sorry to =

> > > say. They were all fine. But what I really

> enjoyed

> > > was seeing so many people with Down syndrome of

> all ages

> > > and getting to =

> > > talk to so many other parents.

> > >

> > > Definitely worth the effort to be there and

> hopefully there

> > > are more in =

> > > my future.

> > >

> > >

> > > T.

> > >

> > > NDSC Conference--Comments?

> > >

> > >

> > > I'd be interested in hearing from those who

> attended the

> > > NDSC Conference

> > > this past weekend.  The conference started

> great with

> > > fellow list-serv

> > > member 's daughter concluding the

> morning

> > > session in a

> > > rousing fashion.  While there were some

> technical

> > > difficulties at first

> > > with her slides, Eleanor not only overcame such

> annoyances,

> > > but, as the

> > > person sitting next to me commented, " she seems

> nonplussed

> > > by the whole

> > > thing; if it were me, I'd be really flustered. "

> > >

> > > I was only able to attend on Saturday.  I'd

> like to

> > > hear about what

> > > sessions were attended and what good information

> was

> > > shared.  I'm

> > > particularly interested in hearing about the

> Sequenom

> > > breakout on

> > > Sunday.

> > >

> > > Mark Leach

> > > Louisville, KY, dad to 5 y/o daughter w/T21

> > >

> >

> >

> >

>

>

>

> --

> “When we long for life without difficulties, remind us

> that oaks grow strong

> in contrary winds and diamonds are made under

> pressure.-Author Unknown

>

> " Knowing trees, I understand the meaning of patience.

> Knowing grass, I can

> understand persistence. "

> - Hal Borland

>

>

>

[Guest guest]

Irma thanks so much for recognizing the gift of time ESPECIALLY since I have a

big recital with my students on Sat eve!

Desi

Subject: Re: NDSC Conference--Comments

To:

Date: Thursday, August 6, 2009, 10:20 AM

 

Oh Desi, this is just an awesome feedback of your adventurous moment out at the

NDSC conference.

Thank you for your precious time with what you have posted.

Irma,21, DS/ASD

[Guest guest]

He is a great guy all around. Very easy to talk with....=)

On Thu, Aug 6, 2009 at 3:46 PM, Desi McKenzie wrote:

>

>

> He's pretty to good to look at, too!

> Desi

>

>

> > >

> > > > From: MICHAEL BAILEY <mtbclarion@...<mtbclarion%40COMCAST.NET>

> > <mtbclarion%40COMCAST.NET <http://40comcast.net/>>>

> > > > Subject: Re: NDSC Conference--Comments?

> > > > To: DOWN-SYN@... <DOWN-SYN%40LISTSERV.NODAK.EDU>

> > <DOWN-SYN%40LISTSERV.NODAK.EDU <http://40listserv.nodak.edu/>>

> > > > Date: Thursday, August 6, 2009, 6:51 AM

> > > > Setting aside Eleanor's speech (I

> > > > passed your remarks on the her Mark - =

> > > > thank you) the two impressions

> > > > I had from Sacramento are that I don't recall

> > ever being in

> > > > a group that =

> > > > large where everyone looked happy.

> > > > Perhaps it was the example of all the people with

> > Down

> > > > Syndrome.

> > > >

> > > > The other is networking. 15 years ago a young

> > couple had

> > > > just arrived in =

> > > > Portland and knew no one.=20

> > > > Within a few weeks they had their first child, a

> > baby boy

> > > > with Down =

> > > > Syndrome. Odd circumcumstance lead

> > > > them to me within a few hours of birth and I went

> > to

> > > > hospital to meet =

> > > > them and their son. They were far from

> > > > home and family and naturally scared on the

> > label. I got to

> > > > be the first =

> > > > person to tell them good things and congratulate

> > > > them. That nice relationship continued for

> > another couple

> > > > years when =

> > > > they moved to Vermont.

> > > >

> > > > They were at the conference along with their now

> > 15 year

> > > > old and very =

> > > > handsome son. It was really a thrill to see him.

> > > > And them. That alone made the trip.

> > > >

> > > > I did attend some sessions. Not the ones you ask

> > about

> > > > Mark. Sorry to =

> > > > say. They were all fine. But what I really

> > enjoyed

> > > > was seeing so many people with Down syndrome of

> > all ages

> > > > and getting to =

> > > > talk to so many other parents.

> > > >

> > > > Definitely worth the effort to be there and

> > hopefully there

> > > > are more in =

> > > > my future.

> > > >

> > > >

> > > > T.

> > > >

> > > > NDSC Conference--Comments?

> > > >

> > > >

> > > > I'd be interested in hearing from those who

> > attended the

> > > > NDSC Conference

> > > > this past weekend. The conference started

> > great with

> > > > fellow list-serv

> > > > member 's daughter concluding the

> > morning

> > > > session in a

> > > > rousing fashion. While there were some

> > technical

> > > > difficulties at first

> > > > with her slides, Eleanor not only overcame such

> > annoyances,

> > > > but, as the

> > > > person sitting next to me commented, " she seems

> > nonplussed

> > > > by the whole

> > > > thing; if it were me, I'd be really flustered. "

> > > >

> > > > I was only able to attend on Saturday. I'd

> > like to

> > > > hear about what

> > > > sessions were attended and what good information

> > was

> > > > shared. I'm

> > > > particularly interested in hearing about the

> > Sequenom

> > > > breakout on

> > > > Sunday.

> > > >

> > > > Mark Leach

> > > > Louisville, KY, dad to 5 y/o daughter w/T21

> > > >

> > >

> > >

> > >

> >

> >

> >

> > --

> > “When we long for life without difficulties, remind us

> > that oaks grow strong

> > in contrary winds and diamonds are made under

> > pressure.-Author Unknown

> >

> > " Knowing trees, I understand the meaning of patience.

> > Knowing grass, I can

> > understand persistence. "

> > - Hal Borland

> >

> >

> >

[Guest guest]

Desi,

Thank you for the wonderful information on the conference.  Your thoughts and

comments were an inspiration of hope and beauty of our children for the future.

Thanks again,

 

________________________________

To: Down Syndrome ;

Sent: Thursday, August 6, 2009 3:16:40 PM

Subject: Re: NDSC Conference--Comments

 

Aloha to ALL!

OMG! It was the first time ever attending an NDSC Conference for and I-

and we such had a wonderful time! Sadly, we could not afford to bring Aubrey, 11

and her PA-(our first separation for more than one day)

so she stayed back in Hawai'i with her Godmother and then her Dad...(had so much

fun with her own planned itinerary-even won an AREA FIRST in Special Olympics

soccer individual drills on Sat!)

We were very surprised as it appears that no one else from Hawai'i came out

especially since Cali is a lot closer than Boston, MA! Maybe one day the

Conference will be held in HAWAI'I?!?!? !?!?!

We spent most of the day on Friday in Libby Kumin's speech workshop...

(I bought her most recent book for a steal and hauled it back in a newly

purchased carry-on bag for a bunch of " goodies " we brought back to Hawai'i) Most

profound discovery is that it appears that Aubrey may also have Apraxia and has

not been diagnosed yet so as early as yesterday I found out who is best ST to

diagnose her here and will be contacting her very soon!

Especially enjoyed the Mothers Discussion (ages 9-12) on Friday afternoon... met

a lot of mommies who walk in the same shoes, wanting their children to make

meaningful friendships, self-talk and hide things a little less(!) and that is

where, ironically, Aubrey's Mommy made a few brand new awesome friends herself!

At the same time (14) attended the " get acquainted session " for her

Siblings Conference. Since she was a bit exhausted from a week of band camp

prior, we decided to rest up and missed Friday evening...Ash thoroughly enjoyed

the Sibling's Conference and her highlight was meeting a couple of the volunteer

junior leaders who had moved away from Hawai'i and used to attend the Kamehameha

Schools where she will be a Freshman in the Fall...she is enjoying viewing daily

since her return-her new Facebook Friends (fellow sibs) on-line!!! I notice a

SIGNIFICANT difference in how much more affectionately and postively she treats

her little sister since our return! MAHALOS RYAN, and I look forward to seeing

your handsome face at PAC RIM next year!

I was really looking forward to Saturday morning as I have found Miss Eleanor

's (21+, ds?!) writings shared by her Dad- on this list very

moving...so- ---Saturday morning I walked right up to her waiting to present in

the front row and introduced myself and how much I was looking forward to

hearing her-the ROCK STAR! speak and to " break a leg! " She did not

disappoint-INSPIRAT IONAL!!!! !!!!!! and I were rolling laughing in the

hotel room later as I recorded her speech! " HOT DATES! " and " FREE OUR PEOPLE "

are phrases that I never thought I would hear out of the mouth (let alone so

CLEARLY!) of one of our " special babes! " Way to go Eleanor!!!!! !!!! I will

NEVER forget your presentation and will draw back upon it for strength for years

to come!

An unexpected delight that preceded her was rio Marin! I found myself in

tears listening to her as I could identify with so much of what she shared in

her journey as a mommy of a child with Down Syndrome...( What was especially

cute, was that day I was wearing a red blouse similar to hers thus several

people complimented ME (I guess we look a lot alike!) on my speech that

morning-BUT that began some really interesting exchanges. Thank you rio from

your " mini-me! " )

A few moments later, I could not believe that I was sitting in the very same

room with another ROCK STAR in my daughter's need's book-the one and only-Dr.

Capone! Being that Aubrey was recently diagnosed PDDNOS, hearing him

speak was our primary highly-motivating force for our presence at the conference

this year...so spent the whole day in his workshops... I am still reeling from

all of the information he shared, all of the bells he set off in my head that

got me to think more productively- about how to get Aubrey the help she needs.

What I will treasure the most from him is his realistic advice-to accept the

complexity of the multiple diagnosis with grace, and that I definitely should

indulge in a glass of wine every once in a while! Looking forward to my dream of

having him present in Hawai'i very, very soon since he agreed to do so!!!!!!!

The banquet on Saturday evening was so much fun! It was so well attended and the

food was great! Enjoyed the awards presentation- (What do Safeway Employers call

our children when they work for their company?- " EMPLOYEES !...NOW GET BACK TO

WORK!!! " ) and the company at our table(!)... and post-dinner speaking with our

new friends (Leilani's Dad and Mom) who is a pastor of a toddler with DS and is

now offering our family SPIRITUAL SUPPORT!!! I cannot wait 'til the day I see my

own daughter dancing to MJ's music on the dance floor with everyone else! Aubrey

is one heck of a dancer! I missed her a lot that evening...(Oh yes, and where

was ARNOLD?!?!?! or at least a rep from his office if just for a moment or two?

Hmm?)

On Sunday morning, I happily learned that there really IS hope for meds to

reduce the symptoms of the highly feared Alzheimer's disease in our adult

population in the future! The first workshop we attended was another highly

anticipated session about teaching children with DS to read with Sue Buckley and

which was very informative. ..I find myself much more POSITIVE

already when working with Aubrey on her sight word vocabulary as she waits the

bus each morning! I happily shared their downsed website resources (Yay! There's

now a downsed USA!) with Aubrey's SPED teacher whom I also commended for ALREADY

employing a lot of their ideas in her classroom!

The last workshop I attended was the Safe Life Project workshop and am thrilled

to say that an agency here in Hawai'i is already looking to purchase their

entire curriculum to use to enhance the Community Based Instruction training of

many of our young people with disabilities here in Hawai'i!

I spent most of the weekend perusing nametags to see if any more of my listmates

here were there to meet in person...on Sunday afternoon, I FINALLY got to meet

the infamous SEAN MCELWEE (looks like Zac Efron!!! and is even more charming!)

and his Mom for a few minutes...if only our paths had been able to cross

sooner...it was great to put a face to my LISTSERV buddies-and NANCY, too whom I

met on the Super Shuttle on the way from the airport to our hotel!!!

and I ended our exciting journey with a late lunch at the local Hard Rock

Cafe and a trip to the Westridge (?) Mall (we HAD to get soaps and sprays from

Bath and Body Works-no stores yet in Hawai'i to take back to friends) and a

lovely stroll in Old Sacramento where we picked up little gifts for our friends

who helped with Aubrey!

We were anxious to get back home to Aubrey (Hawaiian Air flights both ways were

terrific btway) and the very next morning went to Aubrey's school to share with

Aubrey's Teachers and Principal! He was so excited to hear about our experience

at the conference and cannot wait until the CDs come in to support the

Compendium the school purchased!

All in all I would say we had a GRRRRRRRRRRRREAT experience-don' t you think?!

If only I could afford to make it to Orlando...hope the powers that be rotate

back to the West Coast again soon! I MUA! (Go forward!)

Hoping to hear back from a lot of you soon!

Malama pono!

Desi, and Aubrey McKenzie

Mililani, 'Oahu, Hawai'i

I sure hope there's not too many extra characters in this post and that you

enjoyed the read PATRICIA!

> From: MICHAEL BAILEY <mtbclarionCOMCAST (DOT) NET>

> Subject: Re: NDSC Conference-- Comments?

> To: DOWN-SYNLISTSERV (DOT) NODAK.EDU

> Date: Thursday, August 6, 2009, 6:51 AM

> Setting aside Eleanor's speech (I

> passed your remarks on the her Mark - =

> thank you) the two impressions

> I had from Sacramento are that I don't recall ever being in

> a group that =

> large where everyone looked happy.

> Perhaps it was the example of all the people with Down

> Syndrome.

>

> The other is networking. 15 years ago a young couple had

> just arrived in =

> Portland and knew no one.=20

> Within a few weeks they had their first child, a baby boy

> with Down =

> Syndrome. Odd circumcumstance lead

> them to me within a few hours of birth and I went to

> hospital to meet =

> them and their son. They were far from

> home and family and naturally scared on the label. I got to

> be the first =

> person to tell them good things and congratulate

> them. That nice relationship continued for another couple

> years when =

> they moved to Vermont.

>

> They were at the conference along with their now 15 year

> old and very =

> handsome son. It was really a thrill to see him.

> And them. That alone made the trip.

>

> I did attend some sessions. Not the ones you ask about

> Mark. Sorry to =

> say. They were all fine. But what I really enjoyed

> was seeing so many people with Down syndrome of all ages

> and getting to =

> talk to so many other parents.

>

> Definitely worth the effort to be there and hopefully there

> are more in =

> my future.

>

>

> T.

>

> NDSC Conference-- Comments?

>

>

> I'd be interested in hearing from those who attended the

> NDSC Conference

> this past weekend.  The conference started great with

> fellow list-serv

> member 's daughter concluding the morning

> session in a

> rousing fashion.  While there were some technical

> difficulties at first

> with her slides, Eleanor not only overcame such annoyances,

> but, as the

> person sitting next to me commented, " she seems nonplussed

> by the whole

> thing; if it were me, I'd be really flustered. "

>

> I was only able to attend on Saturday.  I'd like to

> hear about what

> sessions were attended and what good information was

> shared.  I'm

> particularly interested in hearing about the Sequenom

> breakout on

> Sunday.

>

> Mark Leach

> Louisville, KY, dad to 5 y/o daughter w/T21

>

[Guest guest]

-you are so welcome!

Desi

> From: MICHAEL BAILEY <mtbclarion@ COMCAST. NET>

> Subject: Re: NDSC Conference-- Comments?

> To: DOWN-SYNLISTSERV (DOT) NODAK.EDU

> Date: Thursday, August 6, 2009, 6:51 AM

> Setting aside Eleanor's speech (I

> passed your remarks on the her Mark - =

> thank you) the two impressions

> I had from Sacramento are that I don't recall ever being in

> a group that =

> large where everyone looked happy.

> Perhaps it was the example of all the people with Down

> Syndrome.

>

> The other is networking. 15 years ago a young couple had

> just arrived in =

> Portland and knew no one.=20

> Within a few weeks they had their first child, a baby boy

> with Down =

> Syndrome. Odd circumcumstance lead

> them to me within a few hours of birth and I went to

> hospital to meet =

> them and their son. They were far from

> home and family and naturally scared on the label. I got to

> be the first =

> person to tell them good things and congratulate

> them. That nice relationship continued for another couple

> years when =

> they moved to Vermont.

>

> They were at the conference along with their now 15 year

> old and very =

> handsome son. It was really a thrill to see him.

> And them. That alone made the trip.

>

> I did attend some sessions. Not the ones you ask about

> Mark. Sorry to =

> say. They were all fine. But what I really enjoyed

> was seeing so many people with Down syndrome of all ages

> and getting to =

> talk to so many other parents.

>

> Definitely worth the effort to be there and hopefully there

> are more in =

> my future.

>

>

> T.

>

> NDSC Conference-- Comments?

>

>

> I'd be interested in hearing from those who attended the

> NDSC Conference

> this past weekend.  The conference started great with

> fellow list-serv

> member 's daughter concluding the morning

> session in a

> rousing fashion.  While there were some technical

> difficulties at first

> with her slides, Eleanor not only overcame such annoyances,

> but, as the

> person sitting next to me commented, " she seems nonplussed

> by the whole

> thing; if it were me, I'd be really flustered. "

>

> I was only able to attend on Saturday.  I'd like to

> hear about what

> sessions were attended and what good information was

> shared.  I'm

> particularly interested in hearing about the Sequenom

> breakout on

> Sunday.

>

> Mark Leach

> Louisville, KY, dad to 5 y/o daughter w/T21

>

[Guest guest]

I'm so glad you enjoyed the post, Joan. Aubrey's school team will have their

first training re the " dual diagnosis " next week-so I will be sitting down with

her autism consultant prior to the two day session to fill her in on what I

learned. I am praying that the CD Rom arrives before the training so AC will be

able to apply some of his workshop revelations to Aubrey's team...

With the Hawai'i DOE budget in major crisis mode right now, it will take a

miracle to get Dr. Capone to Hawai'i, but if that doesn't happen I am going to

apply for emergency funding from a private group here to get Aubrey to Baltimore

to be evaluated...

Que sera, sera...

Desi

Subject: Re: NDSC Conference--Comments

To:

Date: Sunday, August 9, 2009, 6:04 PM

 

Hi All -

Just a quick peek in. Margaret, I'm slowly catching up. I need to read a little

more carefully, but it sounds like you're settling in well. Glad Gareth

cooperated! We've been tag teaming our 's moves!

Now for NDSC.

Desi, it was really good to meet you, briefly, but I am more grateful to read

your account of your experience! it's been the dream of and I to embed a

welcomeness for families of kids who are on this list. He is a good guy (and why

would he NOT come to Hawai'i? really??!)

This year, rather than do a long precon labled for " kids with complex needs, " I

helped a friend, patti McVay, put on a precon that uses all the tools we need to

survive: visual tools, person centered stuff, etc. There were a number of folks

from this list there. it was nice to feel you out there!

And thus, the best part. We blended in. there was, I think, enough information

for all avaialble. For those who attended, let me know what your needs are

....what you wished had been there?

And eys. Miss Eleanor rocks!

So here's a fun story. Eleanor and Andy were in pre-school together a long time

ago. she is a great fan of andy. Well, Joe Wykowski (from Portland), Teri

Couwenhoven (my room mate), and I were in the lobby thinking about dinner when

Micheal and Eleanor came back from the beginning of the outh and adult

conference. Eleanor was soooooo excited! With wide eyes she says to me, " you

would not BELIEVE how many people with Down syndrome are over there!! " And then

we progressed to talking about her workshops (Square Dancing!!!).

I think that made my weekend.

Take care all.

Joan Medlen

Andy's mom - he's 20 now.

[Guest guest]

Desi,

Is there a training video for educators on the dual diagnosis?

Thanks

Son Nate 20 yrs.

________________________________

To:

Sent: Monday, August 10, 2009 5:13:45 AM

Subject: Re: Re: NDSC Conference--Comments

 

I'm so glad you enjoyed the post, Joan. Aubrey's school team will have their

first training re the " dual diagnosis " next week-so I will be sitting down with

her autism consultant prior to the two day session to fill her in on what I

learned. I am praying that the CD Rom arrives before the training so AC will be

able to apply some of his workshop revelations to Aubrey's team...

With the Hawai'i DOE budget in major crisis mode right now, it will take a

miracle to get Dr.. Capone to Hawai'i, but if that doesn't happen I am going to

apply for emergency funding from a private group here to get Aubrey to Baltimore

to be evaluated...

Que sera, sera...

Desi

From: jegm2002 <jegm2002yahoo (DOT) com>

Subject: Re: NDSC Conference-- Comments

To: @yahoogrou ps.com

Date: Sunday, August 9, 2009, 6:04 PM

 

Hi All -

Just a quick peek in. Margaret, I'm slowly catching up. I need to read a little

more carefully, but it sounds like you're settling in well.. Glad Gareth

cooperated! We've been tag teaming our 's moves!

Now for NDSC.

Desi, it was really good to meet you, briefly, but I am more grateful to read

your account of your experience! it's been the dream of and I to embed a

welcomeness for families of kids who are on this list. He is a good guy (and why

would he NOT come to Hawai'i? really??!)

This year, rather than do a long precon labled for " kids with complex needs, " I

helped a friend, patti McVay, put on a precon that uses all the tools we need to

survive: visual tools, person centered stuff, etc. There were a number of folks

from this list there. it was nice to feel you out there!

And thus, the best part. We blended in. there was, I think, enough information

for all avaialble. For those who attended, let me know what your needs are

....what you wished had been there?

And eys. Miss Eleanor rocks!

So here's a fun story. Eleanor and Andy were in pre-school together a long time

ago. she is a great fan of andy. Well, Joe Wykowski (from Portland), Teri

Couwenhoven (my room mate), and I were in the lobby thinking about dinner when

Micheal and Eleanor came back from the beginning of the outh and adult

conference. Eleanor was soooooo excited! With wide eyes she says to me, " you

would not BELIEVE how many people with Down syndrome are over there!! " And then

we progressed to talking about her workshops (Square Dancing!!!).

I think that made my weekend.

Take care all.

Joan Medlen

Andy's mom - he's 20 now.