Re: If you have MDS..

August 11, 2010

Excellent questions...these things pop into my head daily. Mum to Rose (MDS, 3

years old). I look forward to reading the replies.

August 12, 2010

I have a good friend (bff) with MDS. She is married (to someone without MDS),

has a 4 year college degree, and two children without MDS; she drives. She is on

this group. Maybe she will post? I will contact her. She seems to do well...very

well.

>

> ..Im interested to learn about the people with MDS, as my daughter is 11, Im

wondering what the future holds for her. If anyone could answer these questions

I would be greatful:

>

> Does anyone with MDS have a driver licence for example?

> Do you have a job and how do you find working?

> Do you live independantly?

> Are you married?

> Did you finish school with any qualifications?

> I saw that Casey has a son, thats great! Did having MDS worry you about having

children of your own?

>

> What day to day obstacles do you face which other people without MDS may find

easier?

>

> I know that even kids without MDS may face obstacles and may not get a

job/drive etc but Im just trying to guage my hopes for my own daughter, if that

make sense?!

>

> Thanks

> Louise

>

August 12, 2010

awesome, sue!

Â

this clarifies it, we're all around you. Â

Casey Morton: ----------------------------------

IMDSA Self-Advocate/Spokesman www.imdsa.org

Morton Programs Management: Founder.Â www.linkedin.com

Blog: http://caseymorton30.blogspot.com/Â

----------------------------------------------------

Â

Subject: Re: If you have MDS..

To: MosaicDS

Date: Wednesday, August 11, 2010, 11:04 PM

Â

I have a good friend (bff) with MDS. She is married (to someone without MDS),

has a 4 year college degree, and two children without MDS; she drives. She is on

this group. Maybe she will post? I will contact her. She seems to do well...very

well.

>

> ..Im interested to learn about the people with MDS, as my daughter is 11, Im

wondering what the future holds for her. If anyone could answer these questions

I would be greatful:

>

> Does anyone with MDS have a driver licence for example?

> Do you have a job and how do you find working?

> Do you live independantly?

> Are you married?

> Did you finish school with any qualifications?

> I saw that Casey has a son, thats great! Did having MDS worry you about having

children of your own?

>

> What day to day obstacles do you face which other people without MDS may find

easier?

>

> I know that even kids without MDS may face obstacles and may not get a

job/drive etc but Im just trying to guage my hopes for my own daughter, if that

make sense?!

>

> Thanks

> Louise

>

August 12, 2010

Dear Casey/,

I am very much thankful to you both in building confidence and esteem among

parents worldwide who all are quite confused on how to proceed. A million

questions comes around probably because we have been ignorant on these areas

or we might never expected a situation like this even in our dreams. So for

all those people, pouring in confidence and strength is really commendable

social service. It is a morale booster.

What was draining us is actually the so called 'courage' given by the

doctors by telling the wrong side of this which includes, your baby will

always have heart problem, be allergic to all sort of foods, will be less

immune, more chances to have autism, can never undergo a regular education,

will have to live up as 'special' children, our life will be miserable and

so much crap that we will be lost totally.

We were victims and was left out totally isolated. We cried whole day and

wondered what to do. He even claimed that it is impossible for a boy to grow

up and become a father. This was the end for us. As we all know hope is

driving the world. If there is at least 0.0001% possibility, we can be

hopeful.. So when Casey informed that he has a son, we had no bounds for our

joy.. Slowly we dumped the doctor and started depending on this forum and

other areas to educate ourselves.

I would also like to inform that based on the negative remarks from the

doctor, we had all sorts of test right from heart to toe and surprisingly

all results were negative and this puzzled the doctors, who informed that

things will creep up on a later stage. If it is for pure money they

terrorised us, we could have happily donated them, as nothing is more great

than our kids.

I must admit that the service you people are doing is simply great and god

bless you for giving good direction to bring them up.

Thanks and Regards

Pramod Sreedharan

A budget is just a method of worrying before you spend money, as well as

afterward.

From: MosaicDS [mailto:MosaicDS ] On Behalf

Of agirlnamedsuess21

Sent: Thursday, August 12, 2010 04:35

To: MosaicDS

Subject: Re: If you have MDS..

I have a good friend (bff) with MDS. She is married (to someone without

MDS), has a 4 year college degree, and two children without MDS; she drives.

She is on this group. Maybe she will post? I will contact her. She seems to

do well...very well.

>

> ..Im interested to learn about the people with MDS, as my daughter is 11,

Im wondering what the future holds for her. If anyone could answer these

questions I would be greatful:

>

> Does anyone with MDS have a driver licence for example?

> Do you have a job and how do you find working?

> Do you live independantly?

> Are you married?

> Did you finish school with any qualifications?

> I saw that Casey has a son, thats great! Did having MDS worry you about

having children of your own?

>

> What day to day obstacles do you face which other people without MDS may

find easier?

>

> I know that even kids without MDS may face obstacles and may not get a

job/drive etc but Im just trying to guage my hopes for my own daughter, if

that make sense?!

>

> Thanks

> Louise

>

August 12, 2010

________________________________

I was wondering how does the Autism fit in with our kids?? Is it a separate

issues or just another part of the MDS?? I have gotton kaitee's testing back

and she is Autistic. Is this something that stems from MDS or another issue???

Debbi

August 13, 2010

It is a growing thing (dual diagnosis) of autism and Down syndrome. My son has

both.

>

> ________________________________

> I was wondering how does the Autism fit in with our kids?? Is it a separate

> issues or just another part of the MDS?? I have gotton kaitee's testing back

> and she is Autistic. Is this something that stems from MDS or another

issue???

>

> Debbi

>

August 13, 2010

Pramod, my son has no heart defects and he has immune dysfunction probably

because of the autism. We all have allergies in my family-big deal. My son

accomplished major milestones at the same time as my other kids. Then he had

regressive autism with his speech.

We are getting a handle on that, as that is something I can treat. Removing

chromosomes, on the other hand, is NOT one of my specialties. LOL

> >

> > ..Im interested to learn about the people with MDS, as my daughter is 11,

> Im wondering what the future holds for her. If anyone could answer these

> questions I would be greatful:

> >

> > Does anyone with MDS have a driver licence for example?

> > Do you have a job and how do you find working?

> > Do you live independantly?

> > Are you married?

> > Did you finish school with any qualifications?

> > I saw that Casey has a son, thats great! Did having MDS worry you about

> having children of your own?

> >

> > What day to day obstacles do you face which other people without MDS may

> find easier?

> >

> > I know that even kids without MDS may face obstacles and may not get a

> job/drive etc but Im just trying to guage my hopes for my own daughter, if

> that make sense?!

> >

> > Thanks

> > Louise

> >

>

August 13, 2010

I forgot to mention they are both neurological conditions. They can coexist or

they can occur independently. Common knowledge is growing that those of us with

either DS or autism in our families have family histories of neurological issues

(for example: ADHD, rhematoid arthritis, and there is a ton more on the list)

Basically, there is something in the neurology of the cell and the environmental

factors are just a trigger to set whichever condition it is in motion, whether

it be chromosmal abnormality or attention deficits.

>

> ________________________________

> I was wondering how does the Autism fit in with our kids?? Is it a separate

> issues or just another part of the MDS?? I have gotton kaitee's testing back

> and she is Autistic. Is this something that stems from MDS or another

issue???

>

> Debbi

>

August 13, 2010

Check out the s/s of autism.

BTW, being friendly is not the same as being social or acting correct in

socially acceptable manners. (This is a common misconception in kids with

autism.) The top three are impairment in language, impairment of social

*skills*, and impairment in behavior adaptations.

> >

> > ________________________________

> > I was wondering how does the Autism fit in with our kids?? Is it a

separate

> > issues or just another part of the MDS?? I have gotton kaitee's testing

back

> > and she is Autistic. Is this something that stems from MDS or another

issue???

> >

> > Debbi

> >

August 13, 2010

Debbi, I would have her evaluated for autism,as well, by someone who is familiar

with dual diagnoses. You mentioned resistence to change, intolerable tantrums,

neurological ordering, OCD behaviors, aversion to some noises, asocial behavior

outside of you (and my bet is that she is socialable only because of the

DS...sounds just like my son), andmemory issues. I am not pointing this out to

depress you, but once we started treating my son for autism, he began to recover

from these signs. I highly recommend a strict GFCF diet with no HFCS,

preservatives, dyes, or nitartes/nitrites. Some remove soy also.

> >

> > ________________________________

> > I was wondering how does the Autism fit in with our kids?? Is it a

separate

> > issues or just another part of the MDS?? I have gotton kaitee's testing

back

> > and she is Autistic. Is this something that stems from MDS or another

issue???

> >

> > Debbi

> >

August 13, 2010

OMG...DEB DEB DEB...your daughter sound just like my Veronique..very very

similar personality and intelligence traits...I have worked hard with her over

the years with her social skills..she doesnt want freinds..she does hug if she

wants..but is not afraid to tell someone to leave her house if I ahvent warned

her beforehand..has no maths skills or money skills..but if you touch her purse

she knows exactly how much was in there and if any has been taken...her bed is

covered in pillows..she memorises movies but as I have the txt on she will pause

it and re write what the actor has said and will reight down the entire movie

with credits. She loves to sing and dance..and has issues with long and short

term memory. Veronique is 13So pleased to ahve seen you posting..we are going

thru a tough stage at the moment with sleeping habits..but that has something to

do with being bullied at school..she can be very very stubborn on a train of

thought...ie..for a year

wouldnt go to loo for winkle when first out of bed..she would hold all day..and

then wet herself..why did she do this...I DONT KNOW..lol..no medical reason just

Nique not wanting to do as she was told..PeaceNat

Subject: Re: If you have MDS..

To: MosaicDS

Received: Friday, 13 August, 2010, 2:39 AM

Â

Debbi, I would have her evaluated for autism,as well, by someone who is

familiar with dual diagnoses. You mentioned resistence to change, intolerable

tantrums, neurological ordering, OCD behaviors, aversion to some noises, asocial

behavior outside of you (and my bet is that she is socialable only because of

the DS...sounds just like my son), andmemory issues. I am not pointing this out

to depress you, but once we started treating my son for autism, he began to

recover from these signs. I highly recommend a strict GFCF diet with no HFCS,

preservatives, dyes, or nitartes/nitrites. Some remove soy also.

> >

> > ________________________________

> > I was wondering how does the Autism fit in with our kids?? Is it a

separate

> > issues or just another part of the MDS?? I have gotton kaitee's testing

back

> > and she is Autistic. Is this something that stems from MDS or another

issue???

> >

> > Debbi

> >

August 13, 2010

,

Kaitee has started therapy at the Kennady Krieger Institue for her behavior

issues stemming from being bullied at school, which is a start. Kaitee's eating

habbits are pretty set ... chicken , bake potatoe on occassion corn . Lettuce ,

celery and carrots on occassion spagetti .. but the sauce has to be homemade and

placed thru the blender and the meatballs made from chicken.

Nat I think I have found Kaitee's soul mate lol... Kaitee to memorizes her tv

shows and has books upon books where she sits and rewrites the shows word for

word and becasue of her writing skills this is the most tedious job, becasue

each letter has to be perfectly formed and her handwriting is so neat and

precise it takes her forever to complete a writing assignment. (I have often

threatened her teachers that if they rub me the wrong way I would show Kaitee

how if she took to rulers and placed them on the paper she could even do a

better job of spacing and letter sizing lol)

Sleep issues... yes. Right now we are on schedule again with Kaitee sleeping

nights and being awake days... but right now her life is stress free.. lol

school starts soon so we move into the no sleep mode. I have recently helped her

redo her room , and we have had success in making it comfortable for her. She

has also found a box of old barbie dolls and stuff and she has sat and played

with them from sun up to sundown. Kaitee was bullied at school and started to

retaliate against the other kids, in the end she was suspended... which seems

like a bad thing however it finally opened the door to getting the help I need

to help Kaitee...

Your daughter is 13, did her bathroom habits change with the onset of her

menstural cycles???

thanks so much to all for sharing with me.. I feel once again like I stand

amongst friends not by myself fighting alone.

Debbi

mom to Kaitee MDS 13 and e 16

________________________________

To: MosaicDS

Sent: Thu, August 12, 2010 8:06:29 PM

Subject: Re: Re: If you have MDS..