Re: Roll Call!

[Guest guest]

Hi!  My name is Char and my husband as of almost 9 years is .  We have 3

daughters, Kaylin 7, Ashlin 5 and Teagan 2 with MDS.  Teagan was diagnosed right

after birth.  Tested 1 day after she was born and got the results back 3 days

later. 

 

I honestly can say she is more typical sometimes than my other 2.  Her biggest

delay is in speech.  At her 24 month appointment, her speech was at the level of

a 21 month old.  The only health problem so far has been being anemic for a

month.  She recieves speech, physical and music therapy.  Tomorrow she starts a

litercy class to get her to read.  (thanks Zoe for this influence)  Teagan also

is in preschool 2 days a week.  She started when she turned 2.  I am so proud of

all my girls.  Teagan also is starting to follow dance routines---she loves to

do the cha cha slide!  She is into everything right now.  Teagan is a very big

girl too.  She has been either off the typical charts or in the 98th percentile

for height weight and head.  I always say that Teagan doesn't follow charts of

where she should be--she's on her own schedule.  She has brought so much joy to

our lives and I feel like my life is better for having her.  For all the new

parents, welcome! 

 

Char

 

 

Subject: Roll Call!

To: mosaicds

Date: Tuesday, September 15, 2009, 1:36 PM

 

Hi Everyone

It has been a while since we have done this and every now and then we really do

need to introduce ourselves to the group in case new families have come in and

don't know who all is here!

So... I will start....

I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is a

truck driver and comes home about every 3 wks for a few days. My youngest son is

Garrett and he is 13. He and my middle son, Tim live at home and the rest are on

their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for his

diagnosis was he had a severe speech delay that continually worried me. Finally,

after a lot of screaming (literally) he got the diagnosis and we started ST and

OT.

Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

Despite everything, Tim does very well and is like most all 23 yr olds. He is a

little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

So... in a nut shell that is me! Tell us about you!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

Hi

 

I'm Teri and I have 9 mo old twin girls, Grace & Emma.  My husband is in

the FL Air Nat Guard and works at the base full time as a dod civilian.   The

girls were 32 weekers and spent several weeks in the NICU.  That is where the

girls were diagnosised at about 4 wks with mDs.  Our girls are doing great. 

Emma is crawling and starting to pull up on everything.  She has even let go a

few times to test her balance.  Grace is crawling and able to sit up by

herself.  Grace goes to PT every week to help with strengthening because of the

low muscle tone.  Emma goes to PT every other week to work on some sensory

issues that both girls have.  Our PT lady says Emma is a thrill seeker, where

Grace is more of a watcher.  We are waiting to see if we need ST.  They are

babbling a little, but mostly it just funny noises.  So far we have not had any

health issues such as heart or thyroid, only a nasty case of RSV that put them

both in the

hosp for several days right after coming home from the NICU. 

 

I feel very blessed to have my two little miracle babies.  :-) 

 

Welcome to all the new families  :-)

 

..

Subject: Roll Call!

To: mosaicds

Date: Tuesday, September 15, 2009, 6:36 PM

 

Hi Everyone

It has been a while since we have done this and every now and then we really do

need to introduce ourselves to the group in case new families have come in and

don't know who all is here!

So... I will start....

I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is a

truck driver and comes home about every 3 wks for a few days. My youngest son is

Garrett and he is 13. He and my middle son, Tim live at home and the rest are on

their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for his

diagnosis was he had a severe speech delay that continually worried me. Finally,

after a lot of screaming (literally) he got the diagnosis and we started ST and

OT.

Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

Despite everything, Tim does very well and is like most all 23 yr olds. He is a

little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

So... in a nut shell that is me! Tell us about you!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

Hi.  My name is Mike and I am the proud father of a 15 month old pain in the

behind.  My wife Carie and I have been blessed beyond measure by Kiernan.  He

was born full term and was sent to the NICU at the local children's hospital the

day after he was born.  The staff pediatrian stopped by to tell us that our son

had jaundice, pulmonary hypertension, some possible cardiac issues and that some

of the staff suspected Down syndrome.  Not necessarily the most thrilling news,

but we were happy to have him.

 

[Guest guest]

I am Donna Goodman.  I live in Arizona with my sweet husband of 35 years.  We

have 5 living children plus a little girl we lost at birth in 1984.  Our oldest

is 34 and our youngest is 19.  We have nine grandchildren plus one on the way. 

The new arrival will make Ariana a big sister.  Ari was born in July of 2008 and

we received the diagnosis of Down syndrome about an hour after her birth.  The

kids have not had her tested for mosaicism because they believe that she is

simply who she is and a diagnosis won't change any of that; however, we strongly

believe that she is mosaic, simply because her Down features are very mild and

she is just about on track for normal cognitive development.  She does have some

physical delays, but at 14 months, she is pulling up to the couch and standing,

saying " da " very clearly whenever her dad walks into the room, and playing games

like " so big " .  She had open-heart surgery at 4 months to correct

a significant AV canal defect.  She is absolutely the light of our lives every

moment of hers.  This week, her doctor scheduled her for a visit to a pediatric

hemotologist/oncologist because her white cell count is low and her lymphocytes

are high (or maybe I have that backwards).  We know that leukemia is a

possibility, but from all the research we have done, we also know that children

with Down syndrome have better cure rates and more efficient treatment than the

general population, so we will pray hard and be thankful once again for the

miracles of modern medicine and technology. 

 

Is there anyone else who delights in that feeling that we have something so

special that it's almost " our little secret " ?  I know that the Down syndrome

diagnosis is difficult-to-devastating for parents, but having Ari in our lives

has been this constant whisper of warm, soothing air, a treat so significant

that nobody can truly understand it unless they have been there.  She is an

angel here on earth, and we are so unbelievably blessed by her presence in our

family. 

 

I don't normally post here (Ari's mom calls me a " lurker " ), but I do get lots

and lots of good information from those of you who do.  Thank you for sharing! 

I save the best pieces of information in an archive file so that we'll have it

when we need it. 

 

Here's to our blessings.

 

Subject: Roll Call!

To: mosaicds

Date: Tuesday, September 15, 2009, 11:36 AM

 

Hi Everyone

It has been a while since we have done this and every now and then we really do

need to introduce ourselves to the group in case new families have come in and

don't know who all is here!

So... I will start....

I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is a

truck driver and comes home about every 3 wks for a few days. My youngest son is

Garrett and he is 13. He and my middle son, Tim live at home and the rest are on

their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for his

diagnosis was he had a severe speech delay that continually worried me. Finally,

after a lot of screaming (literally) he got the diagnosis and we started ST and

OT.

Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

Despite everything, Tim does very well and is like most all 23 yr olds. He is a

little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

So... in a nut shell that is me! Tell us about you!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

[Guest guest]

Hello -

I am Darlene Benoit in SE PA. I have been a part of this group before it

was a Yahoo list, when it was only a group of parents who emailed each

other, but thanks to Bree we formed into a Yahoo group. And thanks to

Kristy we formed into IMDSA.

I am the proud parent of (12) and (10) - was born in

1999, full term, and after having a high triple screen I was told at her

birth that she did not have DS - " They " , the doctors, would know - they told

me. ;-) We got her diagnosis at 6 months and it rocked my world - luckily

(not for ) she got very sick and I had 2 weeks alone with her in the

PICU and I came to grips with MDS and realized it was still the same

beautiful, wonderful baby - just MY dreams for her had changed. is

in 4th grade in " regular " school. She is in Learning Support for reading

and math. loves the idea of being in love.

is in 7th grade at the middle school and he is a Green Bay Packers

fan, golfer, who likes snakes.

My husband, is on this list too, but he works to support us so he is

very quiet.

I have a degree in Computer Science and was a programmer - now I am working

on my certification to teach HS Math and once I have that then I will either

teach or start on my Masters of Special Education. I figure as a math

teacher, if I don't have a job at least I can use the knowledge to help my

kids.

OK - enough about me, I need to get off to school.

Darlene - Mom to (12) and (10)

On Tue, Sep 15, 2009 at 9:47 PM, Donna Goodman wrote:

>

>

> I am Donna Goodman. I live in Arizona with my sweet husband of 35 years.

> We have 5 living children plus a little girl we lost at birth in 1984. Our

> oldest is 34 and our youngest is 19. We have nine grandchildren plus one on

> the way. The new arrival will make Ariana a big sister. Ari was born in

> July of 2008 and we received the diagnosis of Down syndrome about an hour

> after her birth. The kids have not had her tested for mosaicism because

> they believe that she is simply who she is and a diagnosis won't change any

> of that; however, we strongly believe that she is mosaic, simply because her

> Down features are very mild and she is just about on track for normal

> cognitive development. She does have some physical delays, but at 14

> months, she is pulling up to the couch and standing, saying " da " very

> clearly whenever her dad walks into the room, and playing games like " so

> big " . She had open-heart surgery at 4 months to correct

> a significant AV canal defect. She is absolutely the light of our lives

> every moment of hers. This week, her doctor scheduled her for a visit to a

> pediatric hemotologist/oncologist because her white cell count is low and

> her lymphocytes are high (or maybe I have that backwards). We know that

> leukemia is a possibility, but from all the research we have done, we also

> know that children with Down syndrome have better cure rates and more

> efficient treatment than the general population, so we will pray hard and be

> thankful once again for the miracles of modern medicine and technology.

>

> Is there anyone else who delights in that feeling that we have something so

> special that it's almost " our little secret " ? I know that the Down syndrome

> diagnosis is difficult-to-devastating for parents, but having Ari in our

> lives has been this constant whisper of warm, soothing air, a treat so

> significant that nobody can truly understand it unless they have been

> there. She is an angel here on earth, and we are so unbelievably blessed by

> her presence in our family.

>

> I don't normally post here (Ari's mom calls me a " lurker " ), but I do get

> lots and lots of good information from those of you who do. Thank you for

> sharing! I save the best pieces of information in an archive file so that

> we'll have it when we need it.

>

> Here's to our blessings.

>

>

>

>

> From: Kristy Colvin <kristy@... <kristy%40imdsa.org>>

> Subject: Roll Call!

> To: mosaicds <mosaicds%40yahoogroups.com>

> Date: Tuesday, September 15, 2009, 11:36 AM

>

>

>

> Hi Everyone

> It has been a while since we have done this and every now and then we

> really do need to introduce ourselves to the group in case new families have

> come in and don't know who all is here!

>

> So... I will start....

>

> I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband

> is a truck driver and comes home about every 3 wks for a few days. My

> youngest son is Garrett and he is 13. He and my middle son, Tim live at home

> and the rest are on their own. Tim has mDs and was diagnosed when he was 2

> 1/2. The reason for his diagnosis was he had a severe speech delay that

> continually worried me. Finally, after a lot of screaming (literally) he got

> the diagnosis and we started ST and OT.

>

> Tim is now 23. In school, he didn't require special ed. He went to regular

> classes and the only modifications he had were a little extra time to get

> his work done. (He had ADHD so that was more the reason I think) In 7th

> grade he was reading at a college level. (he loves to read) He has never

> been officially diagnosed, but after a lot of reading, I am sure that he has

> Asperger syndrome (a form of Autism)

>

> Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

> thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma

> and a lot of ear infections and fluid back up.

>

> Right now, Tim is doing nothing at all! Seems like we got stuck in a rut

> after graduation. I am hoping to get him out and see if he can get a job. He

> wants to go to college. Unfortunately, the college is an hour away. But

> hopefully we will figure that out too.

>

> Despite everything, Tim does very well and is like most all 23 yr olds. He

> is a little immature for his age and has some socialization problems, but I

> contribute that to his Asperger syndrome after talking with so many families

> and realizing that their children don't have this problem.

>

> So... in a nut shell that is me! Tell us about you!

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

>

>

[Guest guest]

Hi,

 

I am Luanne, the mother of 6 kids and 4 grandkids.  My kids range in age from 26

down to Mahrya who will be 13 in a few weeks.  Mahrya was born in our van with

her daddy delivering her on the way to the hospital.  Even with a thourough

checkup when we got to the hospital no one mentioned DS.  Our family dr. saw a

few small signs when she went in to see him for the first time...a little low

tone, slightly slanted eyes.  He sent us to a genetisist who could not make a

visual diagnosis and who ordered a blood test.  Mahrya was about 3 weeks old

when we got the final diagnosis of MDS.  And here she is almost a teenager now! 

She is mainstreamed in our local public school here in Wisconsin with pullout

special ed in math (her own special curriculum), language and if she needs extra

help in anything.  She loves choir as singing is one of her favorite things to

do.  She has a wonderful choir teacher who let her sing a solo at last springs

concert.  She believes there is a prince out there who will one day come and

sweep her off her feet.  She is looking forward to getting her own place someday

and has been know to draw floor plans with all furniture arrangements on them,

and she has even gone on the internet to look for neat apartments.  She has seen

her older siblings move out and wants to be grown up like them.  This summer she

spent a lot of time googleing anything she had questions about and taught me all

she knows about worm holes in space and time travel.  She may struggle some

acedemically, but she is a bright girl who will go far.  She has always been a

real blessing to our family.

 

Luanne 

Subject: Roll Call!

To: mosaicds

Date: Tuesday, September 15, 2009, 1:36 PM

 

Hi Everyone

It has been a while since we have done this and every now and then we really do

need to introduce ourselves to the group in case new families have come in and

don't know who all is here!

So... I will start....

I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is a

truck driver and comes home about every 3 wks for a few days. My youngest son is

Garrett and he is 13. He and my middle son, Tim live at home and the rest are on

their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for his

diagnosis was he had a severe speech delay that continually worried me. Finally,

after a lot of screaming (literally) he got the diagnosis and we started ST and

OT.

Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

Despite everything, Tim does very well and is like most all 23 yr olds. He is a

little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

So... in a nut shell that is me! Tell us about you!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

What a great idea Kristy...to do a Roll Call! I have been keeping up w/ our

forum but haven't posted anything in a while so this gives me a chance to update

on my family

Hello everyone!

My name is and I have been w/ my hubby Steve for 12 amazing yrs and we

have 4 beautiful children~Trevor 7, Tasha 4, Tori 2 and Talon almost 4 months

(mDs).

I want to let all of the new families know how important it is to stay connected

w/ other families who share this medical diagnosis of mosaic Down syndrome

This forum along w/ facebook has been instrumental in helping me learn about mDs

and come to terms w/ it. The fact that you can chat w/ other parents who know

exactly what you are going through is priceless! The main thing that I have

learned is that mDs is a diagnosis and it doesn't make Talon who he is now or

who he will be. Yes we will need to keep an eye on possible medical symptoms

and possible delays but thats it!

Talon is doing everything a 3 1/2 month old should be doing. He holds his head

up, smiles, laughs and makes his mommy so proud every minute of every day! We

recently started Early Intervention (which Talon barely qualified for ) 2 days

a week and OT will be once a month. His teacher is amazing and says he better

stop doing so well or she will have to kick him out of the program! A bit of a

a brag~sorry! LOL

Through Early Intervention I have met a new friend whose 3 y/o dtr has mDs

and lives only 5 minutes from my house...can you believe that?!?! Our teacher

used to be her teacher and asked if I would want to contact her, has been

wanting to meet a family w/ mDs. What a wonderful blessing that has been for me

and her and I know we will be lifelong friends

Sorry for the length all but just wanted to update and welcome all of the new

families to this family! Everyone I have met on this forum or on facebook have

been wonderful so I encourage everyone to reach out, ask questions and really

get to know eachother.

Thank you all so much!

Senterfit

[Guest guest]

Hello!

My name is Casey Morton, and I have Mosaic Down Syndrome. I am 29 . I was

diagnosed as a baby and had surgery on my eyes,  Then when that didn't work, I

was put on glasses for the better part of my youth, I've had Case Managers,

Nueroliogist, and Psyhcologist all tell my parents; "  I dont know how Casey's

going to end up " I was also diagnoses with Depression at age 16, and worked my

way out of it all, after getting lost into bad part of life. Now I'm here with a

son Named Ronin he is 2 years old, and a 8 year old I intend to adopt with a

form of Austim his brother Aiden.  I'm a proud father, and advocate.

 Casey T. Morton

IMDSA NewsLetter Editor

________________________________

To: mosaicds

Sent: Tuesday, September 15, 2009 11:36:28 AM

Subject: Roll Call!

 

Hi Everyone

It has been a while since we have done this and every now and then we really do

need to introduce ourselves to the group in case new families have come in and

don't know who all is here!

So... I will start....

I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is a

truck driver and comes home about every 3 wks for a few days. My youngest son is

Garrett and he is 13. He and my middle son, Tim live at home and the rest are on

their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for his

diagnosis was he had a severe speech delay that continually worried me. Finally,

after a lot of screaming (literally) he got the diagnosis and we started ST and

OT.

Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

Despite everything, Tim does very well and is like most all 23 yr olds. He is a

little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

So... in a nut shell that is me! Tell us about you!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

Hi All,

I am Sue.  My daughter is Isabella and she is 2 1/2 .  She has MDS and Triple X

syndrome.  She was diagnosed at 10 months of age.  It was only at my insistence

that they even tested her for something.  For the most part Isabella does really

well.  Speech is her biggest problem and we are working hard on that.  She also

has issues with constipation and loose ligaments but great muscle tone and some

vision issues.  For her having two disorders she does incredible well.  She

meets all of her milestone except for speech is behind.  She really is my little

miracle baby and I thank God for her everyday. 

Sue

Isabella 2 mds xxx

________________________________

To: MosaicDS

Sent: Tuesday, September 15, 2009 8:28:55 PM

Subject: Re: Roll Call!

 

Hi

 

I'm Teri and I have 9 mo old twin girls, Grace & Emma.  My husband is in

the FL Air Nat Guard and works at the base full time as a dod civilian.   The

girls were 32 weekers and spent several weeks in the NICU.  That is where the

girls were diagnosised at about 4 wks with mDs.  Our girls are doing great. 

Emma is crawling and starting to pull up on everything.  She has even let go a

few times to test her balance.  Grace is crawling and able to sit up by

herself.  Grace goes to PT every week to help with strengthening because of the

low muscle tone.  Emma goes to PT every other week to work on some sensory

issues that both girls have.  Our PT lady says Emma is a thrill seeker, where

Grace is more of a watcher.  We are waiting to see if we need ST.  They are

babbling a little, but mostly it just funny noises.  So far we have not had any

health issues such as heart or thyroid, only a nasty case of RSV that put them

both in the

hosp for several days right after coming home from the NICU. 

 

I feel very blessed to have my two little miracle babies.  :-) 

 

Welcome to all the new families  :-)

 

..

From: Kristy Colvin <kristyimdsa (DOT) org>

Subject: Roll Call!

To: mosaicds@yahoogroup s.com

Date: Tuesday, September 15, 2009, 6:36 PM

 

Hi Everyone

It has been a while since we have done this and every now and then we really do

need to introduce ourselves to the group in case new families have come in and

don't know who all is here!

So... I will start....

I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is a

truck driver and comes home about every 3 wks for a few days. My youngest son is

Garrett and he is 13. He and my middle son, Tim live at home and the rest are on

their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for his

diagnosis was he had a severe speech delay that continually worried me. Finally,

after a lot of screaming (literally) he got the diagnosis and we started ST and

OT.

Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

Despite everything, Tim does very well and is like most all 23 yr olds. He is a

little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

So... in a nut shell that is me! Tell us about you!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

Hello, my name is . I live in Georgia and I have 5 children (22,12,11,6,2).

I homeschool the younger four of my children and I provide most of their

therapies at home myself).Our 6 year-old was diagnosed with MDS at 3 1/2 years

old and was misdiagnosed at birth with Trisomy 21 DS based on inappropriate, low

cell counts, which are common in the industry.

My husband, myself, and all of our children have just been discovered as having

dyslexia and we believe that this has contributed to our other diagnosis'of MDS

and apraxia in our families. We think " outside the box " on most issues and I

know this drives others crazy.

I advocate for acceptance of DS, especially MDS, and currently I do

self-instigated research into genetics (specifically genetics dealing with DS,

dyslexia, apraxia, and other neurological conditions); I research the latest

discoveries into these conditions and closely follow updates with each. My

training is in Private Investigation (yes, I used to be one) and nursing (I hold

a current nursing license). Both of my educational backgrounds enable me to have

the knowledge and expertise to obtain information, not easiy or readily

available to the general public, regarding my field of interest.

Currently, I am fighting to obtain legislation to help pass a law to mandate

that more quantitative cell counts be done when genetic tesing is sought in

order to procure better and more accurate diagnosis', better information brought

back to parents, and also better and more accurate research.

TenEyck

>

> Hi Everyone

> It has been a while since we have done this and every now and then we really

do need to introduce ourselves to the group in case new families have come in

and don't know who all is here!

>

> So... I will start....

>

> I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is

a truck driver and comes home about every 3 wks for a few days. My youngest son

is Garrett and he is 13. He and my middle son, Tim live at home and the rest are

on their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for

his diagnosis was he had a severe speech delay that continually worried me.

Finally, after a lot of screaming (literally) he got the diagnosis and we

started ST and OT.

>

> Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

>

> Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

>

> Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

>

> Despite everything, Tim does very well and is like most all 23 yr olds. He is

a little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

>

>

> So... in a nut shell that is me! Tell us about you!

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa.org

> http://www.mosaicmoments.today.com

>

>

>

>

[Guest guest]

Greetings

 

My name is Tina and I live in northern Virginia. I have 3 kids ~ girl who is 16,

boy who is 13, and my youngest, who is 8.  My oldest one Bonnie, is very smart

and talented, she skipped her junior year and is graduating this year - a year

early.  My 13 yr old Connor has ADHD and learning disabilities.  Then there is

a, my 8 yr old who has MDS.  We first learned of her  MDS at the age of

16 months.  She started to walk at 17 months and we are still working on the

potty training issue.  Unfortunately, her dad has had little involvement since

the beginning.  I went in alone to get her testings done when she was a toddler

and went in on my own to get the results.  All doctor appointments and hospital

stays I've gone alone.  So, I commend all dads who have been actively involved

with their kids and continue to do so.  a is of course slow in some

areas, but, wow - does she thrive in alot.  When she was younger, her speech

therapist

was using sign language with her until she was to become more verbal.  At 2 yrs

of age, she was on a 9 to 12 month level with her speech and cognitive skills.

She has become soooo much more verbal, but still uses the sign language on

ocassion.  She was able last school year to write her name, not perfectly, but

you can still understand what it says when you look at it.  Toward the end of

the school year, she started a real neat reading program at school.  Some words

she can recognize, which is so awesome!  This year she has the same teacher

again and in the same room, she has been with her since kindergaten and is now

classified as a 3rd grader.  She is doing fairly well with math concepts and

recently starting counting money.  She has a long way to go, but she has indeed

come so far already!  I am so very proud of her indeed.  She can be quite the

little comedian as well.  When my husband and  I seperated last year, he blamed

that sweet

innocent child of being 90% of our marital problems.  Boy, has he been so

wrong!  She has been a gift and a treasure I would trade for absolutely

nothing!  I still hope and pray some day he will take his blinders off towards

his daughter.   I may not post too much, but I read the posts as often as I

can.  Still going to try to make it to a conference eventually.   Blessing to

you all.

 

Tina

[Guest guest]

My name is my wonderful husband is Hal, we have 3 sons ages 16,6, 18

months. Truett our 18month old is currently diagnosed with Ds but we are trying

to confirm a mDs diagnosis. We live in Midlothian, TX which is about 30 miles

south of Dallas. Truett is doing well and has had no real health issues other

than stuffy nose and tubes in his ears for fluid build up, he is walking and

climbing everything!! We are currently behind in speech development so that is

our area of focus. I am currently serving as the Treasurer of IMDSA.

Subject: Roll Call!

To: mosaicds

Date: Tuesday, September 15, 2009, 1:36 PM

 

Hi Everyone

It has been a while since we have done this and every now and then we really do

need to introduce ourselves to the group in case new families have come in and

don't know who all is here!

So... I will start....

I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is a

truck driver and comes home about every 3 wks for a few days. My youngest son is

Garrett and he is 13. He and my middle son, Tim live at home and the rest are on

their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for his

diagnosis was he had a severe speech delay that continually worried me. Finally,

after a lot of screaming (literally) he got the diagnosis and we started ST and

OT.

Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

Despite everything, Tim does very well and is like most all 23 yr olds. He is a

little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

So... in a nut shell that is me! Tell us about you!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

I am and I have two young daughters, ages 8 & 5. Interesting fact -- I

am the one with Mosaic DS! Neither of my girls has it. My special needs were

more social than anything else, but like Tim, I needed more time to get my work

done and take tests, and visual reminders of assignments (I would forget to

write them down!) by my teachers, and would sign off and my parents would sign

off as well to show that I had completed the assignment and understood it. Now

I am a BIG fan of MS Outlook; it keeps me SO organized! I even color coded

events and tasks so I know who it is for, and also for items that are high

priority.

I am now 39, and happily married to a superman named Ted -- his birth name is

, but his nickname is Ted -- who supports me in my pursuit of a career in

public speaking and advocacy throughout my city, county,and eventually, state.

I have applied to become a Representaitve for Georgia with the IMDSA. I have

recently won the Ms. Congeniality " Goldie " from the Georgia Community Support &

Services organization! I enjoy speaking about awareness, acceptance, no more

labeling,and nothing about me without me.

S. Katz

________________________________

To: mosaicds

Sent: Tuesday, September 15, 2009 2:36:28 PM

Subject: Roll Call!

Hi Everyone

It has been a while since we have done this and every now and then we really do

need to introduce ourselves to the group in case new families have come in and

don't know who all is here!

So... I will start....

I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is a

truck driver and comes home about every 3 wks for a few days. My youngest son is

Garrett and he is 13. He and my middle son, Tim live at home and the rest are on

their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for his

diagnosis was he had a severe speech delay that continually worried me. Finally,

after a lot of screaming (literally) he got the diagnosis and we started ST and

OT.

Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

Despite everything, Tim does very well and is like most all 23 yr olds. He is a

little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

So... in a nut shell that is me! Tell us about you!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

Thank you Kristy for this roll call! As a very new member it has been so great

to read about the families here and get to know them a bit better!

I am Dawn and my husband of 14 yrs is Dale. We have 6 amazing kids! 4 biological

sons...Chase (12), Colton (10), Caden (8) and (6) and 2 precious

daughters that have joined our family through the wonderful world of adoption!

Charla (will turn 3 in two weeks!) and Carys (almost 18 mths).

I've only known the existence of mDs for less than a month even after reading

online about it. I found it after googling the words... " Can someone get a

delayed diagnosis of down syndrome " .

When our youngest daughter was born...both her foster mother and her social

worker all right away thought she looked like she might have down syndrome. The

pediatrician they went to see said she did not have it after just looking at

her. (He probably looked at her hands etc. which have the normal 3 lines on them

etc.)

We adopted her at the age of 10 1/2 mths and when I was reading her progress

reports from her earlier months many described how hard it was to get her to eat

as she was always tired and had a thick tongue that protruded. She would tongue

thrust her food out. She still did this when we brought her home. My hubby used

to say when he was trying to feed her mushed up baby ish type foods.... " I don't

know how to feed her!! This is my 6th kid and I feel like I'm a newbie at this!!

lol "

An eye specialist told us our daughter had Strabismus when we were down south

picking up our girl. We had noticed that her eyes were crossing outwards when

she was tired or " daydreaming " . He told us that he'd probably have to do surgery

on her sometime after she turned one.

While researching Strabisus online....nearly ever website or link I clicked on

said it was very common in down syndrome kids. Again...the words down syndrome

came up. This is when I started to research down syndrome a bit more discovering

this type of down syndrome...Mosaic.

I'm still learning about it but our daughter definitely has some features that

make me think she could have this. After chatting with Kristy a bit...reading

some posts on here and some other posts online...I sometimes question that maybe

she doesn't have this afer all! Very confusing forsure.

We live in a very small very remote town in Northerin British Columbia Canada

where the doctors rotate very quickly! (They don't like all the snow we get I

think!! lol) We seem to get them fresh out of school and then they leave once

they have a little experience under their belts1

I shared my concerns with the doctor here last week at an appt we went to and he

said he knew what mosaic Down Syndrome was but that he was not educated in it at

all. He wanted to do some research and think about it a bit before he decides

what the next step...if there even is one...will be for our sweet girl. He said

he'd call me but I haven't heard back yet and I know he is away now on holidays

for a week and a half so it may be awhile yet till we know what we are doing.

Thanks for the great posts here! It's a busy message board full of great

information!

Dawn.

>

> I am and I have two young daughters, ages 8 & 5. Interesting fact --

I am the one with Mosaic DS! Neither of my girls has it. My special needs were

more social than anything else, but like Tim, I needed more time to get my work

done and take tests, and visual reminders of assignments (I would forget to

write them down!) by my teachers, and would sign off and my parents would sign

off as well to show that I had completed the assignment and understood it. Now

I am a BIG fan of MS Outlook; it keeps me SO organized! I even color coded

events and tasks so I know who it is for, and also for items that are high

priority.

>

> I am now 39, and happily married to a superman named Ted -- his birth name is

, but his nickname is Ted -- who supports me in my pursuit of a career in

public speaking and advocacy throughout my city, county,and eventually, state.

I have applied to become a Representaitve for Georgia with the IMDSA. I have

recently won the Ms. Congeniality " Goldie " from the Georgia Community Support &

Services organization! I enjoy speaking about awareness, acceptance, no more

labeling,and nothing about me without me.

>

> S. Katz

>

>

>

>

> ________________________________

>

> To: mosaicds

> Sent: Tuesday, September 15, 2009 2:36:28 PM

> Subject: Roll Call!

>

>

> Hi Everyone

> It has been a while since we have done this and every now and then we really

do need to introduce ourselves to the group in case new families have come in

and don't know who all is here!

>

> So... I will start....

>

> I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is

a truck driver and comes home about every 3 wks for a few days. My youngest son

is Garrett and he is 13. He and my middle son, Tim live at home and the rest are

on their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for

his diagnosis was he had a severe speech delay that continually worried me.

Finally, after a lot of screaming (literally) he got the diagnosis and we

started ST and OT.

>

> Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

>

> Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

>

> Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

>

> Despite everything, Tim does very well and is like most all 23 yr olds. He is

a little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

>

> So... in a nut shell that is me! Tell us about you!

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa. org

> http://www.mosaicmo ments.today. com

>

>

[Guest guest]

Hi,

I live in andria, VA with my husband Fred and two kids--a daughter,

Forester, age seven, and a son, Anton age 4 and 1/2. Anton was diagnosed with

MDS soon after birth. I'm a writer working on a book about the psycho-spiritual

relationship between a brain cancer patient, Welch, and an artist,

Rosemary Covey, whom he commissioned to interpret his experiences. (A true

story.) I also write personal essays and short fiction, occasionally about

Anton's MDS (and once about Kristy's Tim's). I am fascinated by the way our

brains define, and also, seriously, fail to define us--leaving space for our

spirits, souls, essences or whatever you want to call them to work their magic!

My husband is a lawyer who has worked for years in various capacities as an

advocate, legislator, director and community developer for people in lower

income or at risk communities. The nonprofit he worked for most recently fell

victim to the Recession and he is currently unemployed but hanging in there, and

in the running for several really meaningful jobs. Forester has a fierce,

critical, and also logical personality and is intense when it comes to issues of

justice/injustice. Her first grade teacher predicted she'd be a judge!? Anton

has the best hair, the best smile, and the best sense of humor--just by being

himself he is a great advocate for people with Down syndrome/mosaic DS (so his

many teachers, friends, and fans tell me). He lives in the moment and tries his

best to teach the rest of us to do the same. His favorite joke (and mine) is

" knock knock, " " who's there? " " Olive, " " Olive who? " " Ah love, YOU, mom! "

[Guest guest]

I just had to comment on your post! I really love Anton's knock knock joke! How

sweet is that! Your kids are so adorable!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

http://www.mosaicmoments.today.com

Subject: Re: Roll Call!

To: MosaicDS

Date: Thursday, September 17, 2009, 1:55 PM

 

Hi,

I live in andria, VA with my husband Fred and two kids--a daughter,

Forester, age seven, and a son, Anton age 4 and 1/2. Anton was diagnosed with

MDS soon after birth. I'm a writer working on a book about the psycho-spiritual

relationship between a brain cancer patient, Welch, and an artist,

Rosemary Covey, whom he commissioned to interpret his experiences. (A true

story.) I also write personal essays and short fiction, occasionally about

Anton's MDS (and once about Kristy's Tim's). I am fascinated by the way our

brains define, and also, seriously, fail to define us--leaving space for our

spirits, souls, essences or whatever you want to call them to work their magic!

My husband is a lawyer who has worked for years in various capacities as an

advocate, legislator, director and community developer for people in lower

income or at risk communities. The nonprofit he worked for most recently fell

victim to the Recession and he is currently unemployed but hanging in there, and

in the running for several really meaningful jobs. Forester has a fierce,

critical, and also logical personality and is intense when it comes to issues of

justice/injustice. Her first grade teacher predicted she'd be a judge!? Anton

has the best hair, the best smile, and the best sense of humor--just by being

himself he is a great advocate for people with Down syndrome/mosaic DS (so his

many teachers, friends, and fans tell me). He lives in the moment and tries his

best to teach the rest of us to do the same. His favorite joke (and mine) is

" knock knock, " " who's there? " " Olive, " " Olive who? " " Ah love, YOU, mom! "

[Guest guest]

Hey Jen, We got our dyslexia diagnosis today at the neurologist!! Anyway, I

loved your computer setup and I was wondering if we could get together and you

could show my daughters and I how to set that up? I was telling them how

impressed I was with your computer setup!!P.S. My family is so happy you won

that award. My girls are bouncing off the walls!

>

> I am and I have two young daughters, ages 8 & 5. Interesting fact --

I am the one with Mosaic DS! Neither of my girls has it. My special needs were

more social than anything else, but like Tim, I needed more time to get my work

done and take tests, and visual reminders of assignments (I would forget to

write them down!) by my teachers, and would sign off and my parents would sign

off as well to show that I had completed the assignment and understood it. Now

I am a BIG fan of MS Outlook; it keeps me SO organized! I even color coded

events and tasks so I know who it is for, and also for items that are high

priority.

>

> I am now 39, and happily married to a superman named Ted -- his birth name is

, but his nickname is Ted -- who supports me in my pursuit of a career in

public speaking and advocacy throughout my city, county,and eventually, state.

I have applied to become a Representaitve for Georgia with the IMDSA. I have

recently won the Ms. Congeniality " Goldie " from the Georgia Community Support &

Services organization! I enjoy speaking about awareness, acceptance, no more

labeling,and nothing about me without me.

>

> S. Katz

>

>

>

>

> ________________________________

>

> To: mosaicds

> Sent: Tuesday, September 15, 2009 2:36:28 PM

> Subject: Roll Call!

>

>

> Hi Everyone

> It has been a while since we have done this and every now and then we really

do need to introduce ourselves to the group in case new families have come in

and don't know who all is here!

>

> So... I will start....

>

> I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is

a truck driver and comes home about every 3 wks for a few days. My youngest son

is Garrett and he is 13. He and my middle son, Tim live at home and the rest are

on their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for

his diagnosis was he had a severe speech delay that continually worried me.

Finally, after a lot of screaming (literally) he got the diagnosis and we

started ST and OT.

>

> Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

>

> Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

>

> Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

>

> Despite everything, Tim does very well and is like most all 23 yr olds. He is

a little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

>

> So... in a nut shell that is me! Tell us about you!

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa. org

> http://www.mosaicmo ments.today. com

>

>

[Guest guest]

Hi Y'all.

My name is ... and I am lurker. (feels like a 12 step

program!)

As Donna said -- I find such great information -- but haven't posted

past the intros earlier in the year.

We have four sons (14, 12, 10 and 17 months - MDS). is our

little Joy! He just makes everyone smile and laugh with him. We know

he was given to us to share God's love and joy with everyone. At

church, he is the one climbing under the pew to climb in someone else's

lap. And that someone will tell us that his hugs were just what they

needed that day!

I live just around the corner from in Waxahachie, TX just

south of Dallas.

wasn't officially diagnosed until 8 months - but his Guardian

Angel told me the minute they place him in my arms. He has very mild

outward signs and many have told us " Oh, he doesn't have DS. " He has

had some of the common early issues with feeding and a little slow on

the motor development. But once he gets the hang of it he just takes

off! Now he is a climber and it's up the chair and on top of the table

before I can turn around! He is also into EVERYTHING and it's spread

all over my house. I just had to step over the bottle of oil from the

pantry in the middle of the hallway.

Right now we have a great team with Early Childhood Intervention and

they just give him 'gold stars' every time they come out.

My biggest concern is also Speech & Language Development. The good news

- he babbles non-stop! He has different blends and syllables. Very

expressive in tones and facial expression. You know when he is reading

you the riot act or telling you about his day. You just don't know what

he is saying.

He says Dada and uses it more often than Mama. But if you ask him

" where's .... " he doesn't look towards us very much. He says Stop with

a finger pointed at you or the dog when he's barking (sounds like " op " ).

He was saying a version of " tan u " {thank you} when we gave him his

food but that has stopped. He's doesn't seem to understand directions

or do what he is told. (Hmmmm not different from the teenager!)

As for me ... I am a professor of education teaching online for teacher

certification and graduate degrees. I love working with non-traditional

students who are going through a life change and finding new directions.

(Anyone wanna go to college??) Teaching online has allowed me to work

from home for most of the past 14 years.

~ Thanks for sharing your stories for those of you love to read and see

that we are not alone.

&

[Guest guest]

Hi Friends & Family of MDS -

I'm Ron, Dad to Trinity - DS Age 10... also, Dad to five other children... all

grown and busy with life, and grandfather to four little ones (three born this

year!); and, husband to .

is a semi-retired Montessori teacher. She suffered a stroke last month and

is recovering without any " residuals. " We live in Manitou Springs, Colorado. Its

a picturesque little town of 6,000 at about 6,000 feet at the base of Pikes

Peak.

I'm also an independent Senior Systems Engineer currently working on a contract

for FedEx in Colorado Springs, Colorado.

We moved from Sarasota, Florida to Manitou Springs because we could not find a

suitable school for Trinity. We wanted her to attend school with other children

her age and grade level in a " normal " classroom. We saw that being warehoused

with children with DS, behavioral problems, and other physical and mental

problems would not be a place where she could learn and enjoy learning. We

searched for a place that would fit our idea of the best place for Trinity to

learn. She is a very self-determined and sweet girl and DS has not held her back

from making friends with everyone, learning how to read, write, and do the same

math as her schoolmates. We work with her mostly to show her that we care about

her schoolwork and her progress. She picks up the ball from there and runs,

runs, runs! A total surprise to everyone around her. Her whole school knows who

she is and everyone she meets is greeted with a hug. In school she has to

" paras " one in the morning and

one in the afternoon that help to guide her through the school day. They have

been with her now for three years and have volunteered each of the past two

years to be her paras.

Our goal is to get Trinity into the local community college and achieve a two

year degree.

We want her to be as self relient and capable as possible. We want her to

self-actualize and achieve a life of fullfilling work, love, and family.

Thanks for your participation in this worthwhile association. We can all achieve

our dreams for our children with each other's help and shared understanding.

Sincerely,

Ron (Father to Trinity - DS, Age 10)

________________________________

To: mosaicds

Sent: Tuesday, September 15, 2009 12:36:28 PM

Subject: Roll Call!

Hi Everyone

It has been a while since we have done this and every now and then we really do

need to introduce ourselves to the group in case new families have come in and

don't know who all is here!

So... I will start....

I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is a

truck driver and comes home about every 3 wks for a few days. My youngest son is

Garrett and he is 13. He and my middle son, Tim live at home and the rest are on

their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for his

diagnosis was he had a severe speech delay that continually worried me. Finally,

after a lot of screaming (literally) he got the diagnosis and we started ST and

OT.

Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

Despite everything, Tim does very well and is like most all 23 yr olds. He is a

little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

So... in a nut shell that is me! Tell us about you!

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

Hey everyone Katy from Cali here's our story...

Pretty normal pregnancy miscarried twin at 8wks. Had Simone at 36wks,

noticed delay developmentally everyone says she's fine. At 2yrs starts talking

then stops no new words not many old ones once again bring it up again fine. At

4yrs put her in preschool and the teacher says they have to yell at her from

across the room and when face to face it's like they are speaking chinese, I say

welcome to my hell. They get the speach teacher to have a look wich leads to

tests and tubes talking still slow but will catch up. Fastforward to age 7. Take

her in for a ADD eval. and they take some blood to check for fragile x. 2wks

later Iget a call that the genetics specialist wants to meet. Fine what are we

dealing with? Finally she says Mosaic Trisomic Downs Syndrome. Quick " Scooby

Doo " moment then hang up and tell my husband and plan a trip to the library the

next day. Found 3 books on DS,all had 1 small chapter on MDS not much help. Her

primary Dr.had no idea what it was nor has anyone else really. Now she's 13 in

the 8th grade in pre-algebra wants to own a dessert resturant and her brother

wanted to know last year why there were so many special kids in her class.

That's our story and we're sticking to it. Katy and parents of Simone 13

MDS, Milo 10,and a 4

>

> Hi Friends & Family of MDS -

>

> I'm Ron, Dad to Trinity - DS Age 10... also, Dad to five other children... all

grown and busy with life, and grandfather to four little ones (three born this

year!); and, husband to .

> is a semi-retired Montessori teacher. She suffered a stroke last month

and is recovering without any " residuals. " We live in Manitou Springs, Colorado.

Its a picturesque little town of 6,000 at about 6,000 feet at the base of Pikes

Peak.

>

> I'm also an independent Senior Systems Engineer currently working on a

contract for FedEx in Colorado Springs, Colorado.

>

> We moved from Sarasota, Florida to Manitou Springs because we could not find a

suitable school for Trinity. We wanted her to attend school with other children

her age and grade level in a " normal " classroom. We saw that being warehoused

with children with DS, behavioral problems, and other physical and mental

problems would not be a place where she could learn and enjoy learning. We

searched for a place that would fit our idea of the best place for Trinity to

learn. She is a very self-determined and sweet girl and DS has not held her back

from making friends with everyone, learning how to read, write, and do the same

math as her schoolmates. We work with her mostly to show her that we care about

her schoolwork and her progress. She picks up the ball from there and runs,

runs, runs! A total surprise to everyone around her. Her whole school knows who

she is and everyone she meets is greeted with a hug. In school she has to

" paras " one in the morning and

> one in the afternoon that help to guide her through the school day. They have

been with her now for three years and have volunteered each of the past two

years to be her paras.

>

> Our goal is to get Trinity into the local community college and achieve a two

year degree.

>

> We want her to be as self relient and capable as possible. We want her to

self-actualize and achieve a life of fullfilling work, love, and family.

>

> Thanks for your participation in this worthwhile association. We can all

achieve our dreams for our children with each other's help and shared

understanding.

>

> Sincerely,

>

> Ron (Father to Trinity - DS, Age 10)

>

>

>

>

> ________________________________

>

> To: mosaicds

> Sent: Tuesday, September 15, 2009 12:36:28 PM

> Subject: Roll Call!

>

>

> Hi Everyone

> It has been a while since we have done this and every now and then we really

do need to introduce ourselves to the group in case new families have come in

and don't know who all is here!

>

> So... I will start....

>

> I am Kristy and I have 3 sons and 2 step sons. (and 4 grandsons) My husband is

a truck driver and comes home about every 3 wks for a few days. My youngest son

is Garrett and he is 13. He and my middle son, Tim live at home and the rest are

on their own. Tim has mDs and was diagnosed when he was 2 1/2. The reason for

his diagnosis was he had a severe speech delay that continually worried me.

Finally, after a lot of screaming (literally) he got the diagnosis and we

started ST and OT.

>

> Tim is now 23. In school, he didn't require special ed. He went to regular

classes and the only modifications he had were a little extra time to get his

work done. (He had ADHD so that was more the reason I think) In 7th grade he was

reading at a college level. (he loves to read) He has never been officially

diagnosed, but after a lot of reading, I am sure that he has Asperger syndrome

(a form of Autism)

>

> Health wise, Tim is very healthy. He takes Thyroid meds for his underactive

thyroid and ADHD meds and allergy meds. As a little guy he had severe asthma and

a lot of ear infections and fluid back up.

>

> Right now, Tim is doing nothing at all! Seems like we got stuck in a rut after

graduation. I am hoping to get him out and see if he can get a job. He wants to

go to college. Unfortunately, the college is an hour away. But hopefully we will

figure that out too.

>

> Despite everything, Tim does very well and is like most all 23 yr olds. He is

a little immature for his age and has some socialization problems, but I

contribute that to his Asperger syndrome after talking with so many families and

realizing that their children don't have this problem.

>

> So... in a nut shell that is me! Tell us about you!

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa. org

> http://www.mosaicmo ments.today. com

>

>

[Guest guest]

Hi everyone

My name is Fiona and I live in Torquay, Australia with my wonderful husband Lee

and our 2 gorgeous kids Hunter who will be 2 in October (mds) and Airlie who is

3 months old. We received Hunter's diagnosis about 5 mins after he was born and

it has been a challenge, wurlwind and an exciting 2 years to say the least.

Hunter is progressing really well. He started crawling at 15 mths and walking

at 17 months. His speech is a little delayed but I found once he started

walking the words started flowing. He uses signing for some words like more,

milk, finished, poo and sleep but he seems to be saying more words everyday.

Sometimes they aren't clear and only we can understand him but they are

progressing. Ball used to be Ba but now it is ball and Woof woof used to be woo

woo.

He wakes up every morning happy, looks out his window where our dog is standing

and waiting to be fed and says his name Jinxy (which used to be inksy). My

husband is currently trying to get him to say Mummy Pretty which as you can

imagine has scored him major brownie points. He can say Mummy and Pretty but

just not together yet.

We currently receive OT and ST for Hunter and used to get PT but not as regular

anymore since he's been walking. Hunter attends crèche 1 day a week which he

just loves, and soon he'll be moving up to the toddler room which I think he

will love even more with older kids around him. He is doing everything that all

his little 2yo friends do and he amazes us everyday with the new things he

learns.

Fiona

Mum to Hunter nearly 2 (mds) and Airlie 3 mths

[Guest guest]

Hi everyone, little behind with the roll call, but nevermind! My name

is Seph, from Perth, Australia. I have three beautiful daughters -

Jade & Taya my twin 5 year old's and Sienna who is 14 months with

MDS. (hubby) and I were told about 1 hour after Sienna was born

that she might have Down syndrome, which was a massive shock and I

went into a quick meltdown over the possible news. 3 days later it

was confirmed that she had MDS and I spiraled into a deep depression.

It was a difficult journey for me (other underlying issues involved as

well) however 14 months later I am very happy to say that I am doing

very well and Sienna is the most amazing child, we all totally adore

her and our love for her is unspeakable. She has met all her

milestones (a little on the later side of the 'norm' but still within

the allocated age bracket), she is trying to walk at the moment, but

has to make do with pushing around her trolley! can't quite manage to

do it on her own just yet. I just feel so blessed and lucky that she

came into our lives and I have changed and grown as a person who never

thought I'd be able to cope with a child with a disability to not

being able to do without it! Sienna and I were lucky enough to meet

quite a few of you at the conference in Ohio and it gave me even more

hope for the future seeing how amazing all the children and adults were.

Seph & Sienna xx

[Guest guest]

Hello,

My name is Janey (Dad is Jarrod) - mom to (2 1/2) and - 15 mths

MDS.  We live in New Orleans. 

was born June 08.  We knew at 22 weeks there was a heart defect so the

odds of DS were there.  He

arrived on time and was diagnosed with MDS within a week.  He has had an AVSD

repair (Oct 08), then in April

of 09 had repair for mytopic craniosynstosis.  He did great through both

surgeries.  We have one of two surgeries

done now to repair his fingers.  He was also born with syndactaly (spell?).  3

fingers on each hand were joined

together by tissue.  Going to tackle the last one in Nov and hopefully from

there only see doctors on an annual basis.

is a sweet kid - always happy and smiling.  He is sitting well and

babbles a lot - only real word is Mama and

he uses it with authority!  We are hoping he starts to crawl soon - we aren't

close but we are working hard on it.  He has

speech, OT, PT and a special educator every week.  We are very grateful for all

the wonderful services!

He's starting at a little school next month.  We feel he's really ready to be

out and about with other kids and his sister

goes there as well.  So we are looking forward to this.

Thank you to all the great posts here - I have learned so much (planning to

start him on Omega 3 soon) and appreicate

all the information.

Would love to know if anyone else from New Orleans is here.

 

 

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