Re: 25 Years: Ups and Downs

[Guest guest]

wow Judie! It sounds like shes doing AMAZINGLY! She might get a kick out

of the group that's been set up for the young adults with MDS to chat!!

It's amazing that you didn't find out until recently that she's mosaic...

Well, I'm Angel, and from Southern CA... also the mother of 6 children! We

have 5 boys and 1 girl! is our 3rd child. No one noticed his Downs at

birth, althought *I* thought he looked VERY different from the other

children. What we had an immediate issue with was his bowel disease, he wasn't

able

to pass any AT ALL, and had to have a colostomy at 3 days old. Had a couple

more operations by the time he was 6 months old. Thankfully he's been quite

healthy since then. 's MDS was diagnosed at 16 mos, when I was

pregnant again, and just happened to take with me to my appt with a

geneticist to talk about the bowel disease being passed on to the other kids...

she

spent more time staring at him than talking to me, and finally asked if she

could do HIS bloodwork! 2 weeks later we had a diagnosis of MDS...but we

weren't shocked at all...we knew something was wrong, but couldnt get the dr's

to

listen to us over the months.

He's 11 now... we're just facing puberty... he's about to start 6th grade,

and is in a severly handicapped class. Next week he has an appt for some

evaluations at Kaiser, because his teacher feels very strongly that something

ELSE is keeping him from learning... very possibly, ADD, and possibly

dyslexia...but this appt will be a long one to screen for everything! I'm

looking

forward to that....he's been at an academic standstill for YEARS now. Sigh...

It's great to hear about your daughter and how amazingly she's doing!!

~ANGEL~

Mom to 11 Mosaic Down Syndrome/Hirschsprung's Disease

Lance 15, Tyler 12, 9

Jaeda 8 & Shayne 2

[Guest guest]

Wow Judie - Your daughter sounds like an awesome young women, who had

wonderful parents to guide her along the way. Your story is an inspiration

to those of us who are just beginning this journey with our babies. My

grandson Adam has MDS. He was diagnosed at 2 days old. He just turned two

a couple of weeks ago. I am happy to say he is progressing wonderfully and

has had no major health problems. I was fortunate to be blessed again with

a granddaughter six weeks after Adam was born. She will be two in a couple

of weeks. Now we have started to notice something that I find amazing.

Skylar (my granddaughter) has taken over as teacher. She likes to be

in charge, so it comes easy to her. lol Adam has begin to copy whatever

she does. If she runs, he runs. She learned to climb up on the couch and so

he followed her up there. If he stand up on the couch she will tell him No

No Sit. Today she stood and he looked right at her an told her to Sit.

Adam has several therapist and they do a wonderful job with him, but I think

he learns more from this tiny little girl. One funny story. The latest is

she taught Adam how to turn on the stereo. I went into the kitchen for one

minute, the stereo came on - full blast - and the two of them are in the

middle of the living room dancing. It was so cute, we couldn't get mad.

Donna - gram to Double Trouble - Adam 2 yrs mds and Sky 23 months

-- 25 Years: Ups and Downs

Dear moderator et al,

Ups and Downs is the book I am slowly writing which I will never finish,

because Christi will never be " finished. " I have 25 years' experience,

specializing in inclusive education, which I am always happy to share. We

only

learned of her mosaicism last winter when she was unsuccessfully considered

for

enrollment in the Aricept trial at Stanford.

Christi was born Christmas Day, 1978, and is the youngest of our six

children, as well as the favorite aunt to our 19 grandchildren. Her

patron saint

is St. the Astonishing, which may explain why she is quite typical

of

a person who has Down syndrome, and that she is, well, astonishing in that

she has outperformed her IQ.

She has a high school diploma (regular curriculum, modified expectations,

passed all competencies), a California driver's license, and a 4.0 gpa for

34

units of junior college classes, where she is a TA for the beginning Drama

section. This fall she is enrolled in Dance Choreography and Auditioning

Techniques. She loves Pilates and weight training, and plays skills golf

for Special

Olympics.

She was blessed with a father who wholeheartedly supports my tenacious

advocacy (her first IEP went to due process, and it pretty much continued

that way),

and an elementary school special educator who remains our friend, intimately

involved to this day, long after teaching Christi to read and write cursive

and pass the high school math competencies, and who always reassured me that

I

was not crazy to want her, for example, to take Spanish or economics or

speak

at graduation ceremonies, or take seven years to learn to drive. She never

believed in plateaus, even when it was the expected norm for special

education.

Christi barely survived two cardiac repair surgeries in her second year of

life, and is left with a faulty mitral valve which will eventually fail her.

Now, she is surviving a broken engagement, a love affair the end of which

truly

broke her heart. It was Romeo and t With Down Syndrome, but even in

pieces her heart is huge.

So is her stomach, which never feels full and leaves her in a constant

battle

(mostly with me) against weight gain. She can count up a day's carbs and

calories in her head, and calculate the daily average for a week, but she

can't

figure out why she doesn't lose weight when she cheats and doesn't count it

(how normal is that?!). She keeps information in her Palm device, programs

her

VCR, and communicates with me largely by text messages from her studio

apartment (a part of our home), but left to her own devices she would eat

in front

of the television all day. I distract her with weekly sewing lessons, art

lessons, a special recreation bowling league, and volunteer work at the

hospital. To find her the right job, I will probably have to develop yet

another

career for this now senior-citizen-mother and become a job developer...

She's pictured on the July 2004 NDSS convention brochure (second from the

top), and last August she was thrilled to be elected by her peers to the

board of

directors of the NDSC. At their convention in August, she's leading a

self-advocate's workshop where she'll teach a hip hop dance routine, I hope!

Maybe we'll meet some of you there; that would be wonderful!

Judie Hockel

[Guest guest]

Thanks for the encouragement and sharing your story. We've got a long road

here, but encouraging to know that it isn't going to be too bad with a little

patience!!

Irene mom to Nat 10MDS, Luke 8, Emilia 5, Lilly 3 and Isaac 6mo

jhockel@... wrote:

Dear moderator et al,

Ups and Downs is the book I am slowly writing which I will never finish,

because Christi will never be " finished. " I have 25 years' experience,

specializing in inclusive education, which I am always happy to share. We only

learned of her mosaicism last winter when she was unsuccessfully considered for

enrollment in the Aricept trial at Stanford.

Christi was born Christmas Day, 1978, and is the youngest of our six

children, as well as the favorite aunt to our 19 grandchildren. Her patron saint

is St. the Astonishing, which may explain why she is quite typical of

a person who has Down syndrome, and that she is, well, astonishing in that

she has outperformed her IQ.

She has a high school diploma (regular curriculum, modified expectations,

passed all competencies), a California driver's license, and a 4.0 gpa for 34

units of junior college classes, where she is a TA for the beginning Drama

section. This fall she is enrolled in Dance Choreography and Auditioning

Techniques. She loves Pilates and weight training, and plays skills golf for

Special

Olympics.

She was blessed with a father who wholeheartedly supports my tenacious

advocacy (her first IEP went to due process, and it pretty much continued that

way),

and an elementary school special educator who remains our friend, intimately

involved to this day, long after teaching Christi to read and write cursive

and pass the high school math competencies, and who always reassured me that I

was not crazy to want her, for example, to take Spanish or economics or speak

at graduation ceremonies, or take seven years to learn to drive. She never

believed in plateaus, even when it was the expected norm for special education.

Christi barely survived two cardiac repair surgeries in her second year of

life, and is left with a faulty mitral valve which will eventually fail her.

Now, she is surviving a broken engagement, a love affair the end of which truly

broke her heart. It was Romeo and t With Down Syndrome, but even in

pieces her heart is huge.

So is her stomach, which never feels full and leaves her in a constant battle

(mostly with me) against weight gain. She can count up a day's carbs and

calories in her head, and calculate the daily average for a week, but she can't

figure out why she doesn't lose weight when she cheats and doesn't count it

(how normal is that?!). She keeps information in her Palm device, programs her

VCR, and communicates with me largely by text messages from her studio

apartment (a part of our home), but left to her own devices she would eat in

front

of the television all day. I distract her with weekly sewing lessons, art

lessons, a special recreation bowling league, and volunteer work at the

hospital. To find her the right job, I will probably have to develop yet another

career for this now senior-citizen-mother and become a job developer...

She's pictured on the July 2004 NDSS convention brochure (second from the

top), and last August she was thrilled to be elected by her peers to the board

of

directors of the NDSC. At their convention in August, she's leading a

self-advocate's workshop where she'll teach a hip hop dance routine, I hope!

Maybe we'll meet some of you there; that would be wonderful!

Judie Hockel

[Guest guest]

Dear Judie,

Thanks for letting us know more about Christi and your family. I have to ask,

why Christi was denied on the Aricept study? We have a member who was a part of

the Aricept study.

Please let us know how the convention goes with Christi and her teaching! It

sounds very exciting and perhaps we will see you at our next convention next

year!

Kristy Colvin

IMDSA President

jhockel@... wrote:

Dear moderator et al,

Ups and Downs is the book I am slowly writing which I will never finish,

because Christi will never be " finished. " I have 25 years' experience,

specializing in inclusive education, which I am always happy to share. We only

learned of her mosaicism last winter when she was unsuccessfully considered for

enrollment in the Aricept trial at Stanford.

Christi was born Christmas Day, 1978, and is the youngest of our six

children, as well as the favorite aunt to our 19 grandchildren. Her patron

saint

is St. the Astonishing, which may explain why she is quite typical of

a person who has Down syndrome, and that she is, well, astonishing in that

she has outperformed her IQ.

She has a high school diploma (regular curriculum, modified expectations,

passed all competencies), a California driver's license, and a 4.0 gpa for 34

units of junior college classes, where she is a TA for the beginning Drama

section. This fall she is enrolled in Dance Choreography and Auditioning

Techniques. She loves Pilates and weight training, and plays skills golf for

Special

Olympics.

She was blessed with a father who wholeheartedly supports my tenacious

advocacy (her first IEP went to due process, and it pretty much continued that

way),

and an elementary school special educator who remains our friend, intimately

involved to this day, long after teaching Christi to read and write cursive

and pass the high school math competencies, and who always reassured me that I

was not crazy to want her, for example, to take Spanish or economics or speak

at graduation ceremonies, or take seven years to learn to drive. She never

believed in plateaus, even when it was the expected norm for special education.

Christi barely survived two cardiac repair surgeries in her second year of

life, and is left with a faulty mitral valve which will eventually fail her.

Now, she is surviving a broken engagement, a love affair the end of which truly

broke her heart. It was Romeo and t With Down Syndrome, but even in

pieces her heart is huge.

So is her stomach, which never feels full and leaves her in a constant battle

(mostly with me) against weight gain. She can count up a day's carbs and

calories in her head, and calculate the daily average for a week, but she can't

figure out why she doesn't lose weight when she cheats and doesn't count it

(how normal is that?!). She keeps information in her Palm device, programs her

VCR, and communicates with me largely by text messages from her studio

apartment (a part of our home), but left to her own devices she would eat in

front

of the television all day. I distract her with weekly sewing lessons, art

lessons, a special recreation bowling league, and volunteer work at the

hospital. To find her the right job, I will probably have to develop yet

another

career for this now senior-citizen-mother and become a job developer...

She's pictured on the July 2004 NDSS convention brochure (second from the

top), and last August she was thrilled to be elected by her peers to the board

of

directors of the NDSC. At their convention in August, she's leading a

self-advocate's workshop where she'll teach a hip hop dance routine, I hope!

Maybe we'll meet some of you there; that would be wonderful!

Judie Hockel