RE: Re: If you have MDS..Depression in MDS??

[Guest guest]

A shot in the dark but...

I just started reading a book that has been helping me and will help

me with my daughter too. We're both very emotional people and it's

changing my perspective on a lot of things. The books is called " The

Highly Sensitive Person " written by Elaine N Aron, Ph. D. She has

written one for both adults and children. It is not written for those

with MDS or DS or any type of diagnosis which is great! It is simply

a book that will identify particular sensitivities, ways to reframe

situations (if a person gets anxiety) into a more positive light,

insight into how high sensitivity affects relationships, tips on how

to deal with uncomfortable situations, etc... I am only on chapter 4

so far but I see many of the traits that are identified in myself and

in my daughter...I found it on Amazon. Check it out and read the

first chapter online.

I'd also love to hear if anyone else has read this...

-Missy, mom to Lainy 7.5 yrs MDS and Colin 4.5 yrs

> Veronique was diagnosed with MDS and ADHD..we dropped the ADHD as

> the MDS was a sufficent tag so to speak..until the bullying Nique

> was far more social then she is now..I am still struggling to get

> her to school..and her sleep is major all over the place. She used

> to make freinds and loved having all classmates over for birthdays,

> but now she finds crowds just way to much and hates people in her

> room..she has no friends over to visit..she has put on masses of

> weight and become quite sedentary..I am hoping when I visit the

> states to maybe be able to talk to some people there as to how to

> handle what I think is depression and school phobia in my MDS

> child..because no one here in Australia seems to know what to do

> except look at me..and I am like...huh??..shrug.....I tried

> EVERYTHING!!!..rewards, behaviour charts making her stay awke

> longer, letting her sleep in, making her go to school(increases

> anxiety) sedative, antihitimine she is allergic too..sends her berko

> not to sleep, alternative therapies..at his very moment we have

> worked thru the massive anxious periods of uncontrollable sobbng and

> irratioanl fear and now just trying to get her to sleep soundly

> instead of waking during her lighter REM times..all this with no

> solid help..so any more advise is always welcome..O and the school

> on my back casue she isnt going altho I talk to them

> everyday...sorry guys tht was a story and a half..but there it is

> for the moment

>

>

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > > ________________________________

> > >

> > > > > 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

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

[Guest guest]

wi=ow..it does look good..cheers for that.and I am liking the Highly Sensitive

child one as ell..goota see if I can get them over here so I can read on the

planeCheers

> Veronique was diagnosed with MDS and ADHD..we dropped the ADHD as 

> the MDS was a sufficent tag so to speak..until the bullying Nique 

> was far more social then she is now..I am still struggling to get 

> her to school..and her sleep is major all over the place. She used 

> to make freinds and loved having all classmates over for birthdays, 

> but now she finds crowds just way to much and hates people in her 

> room..she has no friends over to visit..she has put on masses of 

> weight and become quite sedentary..I am hoping when I visit the 

> states to maybe be able to talk to some people there as to how to 

> handle what I think is depression and school phobia in my MDS 

> child..because no one here in Australia seems to know what to do 

> except look at me..and I am like...huh??..shrug.....I tried 

> EVERYTHING!!!..rewards, behaviour charts making her stay awke 

> longer, letting her sleep in, making her go to school(increases 

> anxiety) sedative, antihitimine she is allergic too..sends her berko 

> not to sleep, alternative therapies..at his very moment we have 

> worked thru the massive anxious periods of uncontrollable sobbng and 

> irratioanl fear and now just trying to get her to sleep soundly 

> instead of waking during her lighter REM times..all this with no 

> solid help..so any more advise is always welcome..O and the school 

> on my back casue she isnt going altho I talk to them 

> everyday...sorry guys tht was a story and a half..but there it is 

> for the moment

>

>

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > > ________________________________

> > >

> > > > > 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

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

[Guest guest]

yea Nique was like that when younger and she always needs loads of tme to know

when or if someone coming into house..if I let her nap in afternoon she most def

stays awakw all night..it is like she is not drifting back to sleep when her

sleep isnt so deep.;she is waking and staying awake...this morning hse wanted to

go t school.but just couldnt wake up..I tried and tried and tried..and at 12pm

she finally roused and said..You werer supposed to woke me mummy for school..so

we had a talk about it..and if she wants to go to school she needs to sleep at

night...etc etc..

Subject: Re: If you have MDS..Depression in MDS??

To: MosaicDS

Received: Wednesday, 25 August, 2010, 3:39 AM

 

It's always hard to be blindsided with so many issues and not know where to go

or what to do. I am mom to Aniza, 4 with MDS. For the most part, she is quite

the normal toddler. But she hates crowds of any kind and usually takes over an

hour to become comfortable with any company in the house. We also had the

problem with sleeping. She would wake up in the middle of the night many times a

night screaming and short of breath. Someone asked me if she napped during the

day and I said never. So they said try having her nap in the early afternoon

and she will sleep better. Worked like a charm. She comes home at noon, eats

lunch and takes a nap then she sleeps all night but on days when there is no

nap, she's up two and three times a night. I hope this helps even a little.

Every year at the first day of school I ask the teacher if she would mind

explaining MDS to the parents and children or if I could and this has really put

the kids on her side. They

kind of take on a sense of protection toward her and has made school pretty

good for her.

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > > ________________________________

> > >

> > > > > 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

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

[Guest guest]

Also the bullying didnt occur until about 11/12/13 age group..and it caught both

of us by surprise..I dont know in the states but over here girls get to that age

and become right roylae little cows..the school had many many issues with

bullying and has only just addressed it this year..but I had to remove Veronique

last year..the girls would pretend to be her freind to set her up and tease her

or get her into trouble..etc..etc..and the teachers did nothing really to

discourage or investigate..I didnt know all of this was going on so was

traipsing the country visiting docters etc looking at other health issues and

feeling like one of those moms that get their kids medical treatment all the

time..in fact was asked by my local MD if I felt I was depressed (ie working

full time, MDS child, another child and single mom) and honestly I wasnt..when I

found the true cause I was ready to go postal..I had quit work completely and go

on benifits..so we are at home

full time and trying to fix and issue that was 3 years in the making with a

possibility of lifetime scarring emotionally and developmentally...she went back

to year one in school work..that is the one major thing that sucks about being a

single parent everyone thinks you overexaggerate or someting and dont look at

the real issue..it is annoying and frustrating..I know I cant be supermom..but I

am no weeping loonytoon either.

Subject: Re: If you have MDS..Depression in MDS??

To: MosaicDS

Received: Wednesday, 25 August, 2010, 3:39 AM

 

It's always hard to be blindsided with so many issues and not know where to go

or what to do. I am mom to Aniza, 4 with MDS. For the most part, she is quite

the normal toddler. But she hates crowds of any kind and usually takes over an

hour to become comfortable with any company in the house. We also had the

problem with sleeping. She would wake up in the middle of the night many times a

night screaming and short of breath. Someone asked me if she napped during the

day and I said never. So they said try having her nap in the early afternoon

and she will sleep better. Worked like a charm. She comes home at noon, eats

lunch and takes a nap then she sleeps all night but on days when there is no

nap, she's up two and three times a night. I hope this helps even a little.

Every year at the first day of school I ask the teacher if she would mind

explaining MDS to the parents and children or if I could and this has really put

the kids on her side. They

kind of take on a sense of protection toward her and has made school pretty

good for her.

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > > ________________________________

> > >

> > > > > 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

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

[Guest guest]

Unfortunately, I do not believe that is unique to Australia. I taught middle

school for 8 years and have taught high school for 10 years (starting my 11th

now) and girls are just downright mean! Plus, I am speaking from the experience

of having been bullied – more like TORMENTED – by my classmates for years.

A.

Special Educator

Simon Kenton High School

(859)960-0351

cynthia.jones@...

" Deaf People Can Do Anything Except Hear! " (I. King Jordan)

Confidentiality Notice - This email is intended only for the person to whom it

is addressed and may contain confidential information. Any unauthorized review

is prohibited. If you are not the intended recipient, kindly contact the sender

by reply email and destroy all copies of the original message. If you are the

intended recipient, but do not wish to receive communication through this

medium, please advise the sender immediately.

From: MosaicDS [mailto:MosaicDS ] On Behalf Of

nat alex

Sent: Wednesday, August 25, 2010 12:48 AM

To: MosaicDS

Subject: Re: Re: If you have MDS..Depression in MDS??

Also the bullying didnt occur until about 11/12/13 age group..and it caught both

of us by surprise..I dont know in the states but over here girls get to that age

and become right roylae little cows..the school had many many issues with

bullying and has only just addressed it this year..but I had to remove Veronique

last year..the girls would pretend to be her freind to set her up and tease her

or get her into trouble..etc..etc..and the teachers did nothing really to

discourage or investigate..I didnt know all of this was going on so was

traipsing the country visiting docters etc looking at other health issues and

feeling like one of those moms that get their kids medical treatment all the

time..in fact was asked by my local MD if I felt I was depressed (ie working

full time, MDS child, another child and single mom) and honestly I wasnt..when I

found the true cause I was ready to go postal..I had quit work completely and go

on benifits..so we are at home

full time and trying to fix and issue that was 3 years in the making with a

possibility of lifetime scarring emotionally and developmentally...she went back

to year one in school work..that is the one major thing that sucks about being a

single parent everyone thinks you overexaggerate or someting and dont look at

the real issue..it is annoying and frustrating..I know I cant be supermom..but I

am no weeping loonytoon either.

From: michiganimdsa <michiganimdsa@...<mailto:michiganimdsa%40yahoo.com>>

Subject: Re: If you have MDS..Depression in MDS??

To: MosaicDS <mailto:MosaicDS%40yahoogroups.com>

Received: Wednesday, 25 August, 2010, 3:39 AM

It's always hard to be blindsided with so many issues and not know where to go

or what to do. I am mom to Aniza, 4 with MDS. For the most part, she is quite

the normal toddler. But she hates crowds of any kind and usually takes over an

hour to become comfortable with any company in the house. We also had the

problem with sleeping. She would wake up in the middle of the night many times a

night screaming and short of breath. Someone asked me if she napped during the

day and I said never. So they said try having her nap in the early afternoon and

she will sleep better. Worked like a charm. She comes home at noon, eats lunch

and takes a nap then she sleeps all night but on days when there is no nap,

she's up two and three times a night. I hope this helps even a little. Every

year at the first day of school I ask the teacher if she would mind explaining

MDS to the parents and children or if I could and this has really put the kids

on her side. They

kind of take on a sense of protection toward her and has made school pretty good

for her.

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > > ________________________________

> > >

> > > > > 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

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

[Guest guest]

Nat -

I brought both and to a Neurologist. The Neurologist put

on Zoloft (for depression, which is common in ADD/ADHD kids because they are

smart and they know they are different and in Middle school the last thing

you want to be is different.

Darlene - Mom to (13) and (11)

>

>

> Veronique was diagnosed with MDS and ADHD..we dropped the ADHD as the MDS

> was a sufficent tag so to speak..until the bullying Nique was far more

> social then she is now..I am still struggling to get her to school..and her

> sleep is major all over the place. She used to make freinds and loved having

> all classmates over for birthdays, but now she finds crowds just way to much

> and hates people in her room..she has no friends over to visit..she has put

> on masses of weight and become quite sedentary..I am hoping when I visit the

> states to maybe be able to talk to some people there as to how to handle

> what I think is depression and school phobia in my MDS child..because no one

> here in Australia seems to know what to do except look at me..and I am

> like...huh??..shrug.....I tried EVERYTHING!!!..rewards, behaviour charts

> making her stay awke longer, letting her sleep in, making her go to

> school(increases anxiety) sedative, antihitimine she is allergic too..sends

> her berko not to sleep, alternative therapies..at his very moment we have

> worked thru the massive anxious periods of uncontrollable sobbng and

> irratioanl fear and now just trying to get her to sleep soundly instead of

> waking during her lighter REM times..all this with no solid help..so any

> more advise is always welcome..O and the school on my back casue she isnt

> going altho I talk to them everyday...sorry guys tht was a story and a

> half..but there it is for the moment

>

>

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > > ________________________________

> > >

> > > > > 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

>

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

> > >

> > > > >

[Guest guest]

I had depression when, I was younger and this sings true to me in all points of

it. I dont have an answer, other than I can severally relate, I do not know what

my percent is on my MDS. But if you;d like to talk, let me know.

 

This is a good topic by the way to discuss. And people need to know about it,

and also it feeds into the level of where I'm going with things. I'm going to

college to be a teacher through paraeducation. So, questions/scenarios like

these are huge!

 

And can be used as a helping tool for others.

 

 

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

IMDSA Self-Advocate/Spokesman www.imdsa.org

Morton Programs Management: Founder.  www.linkedin.com

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

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

 

Subject: Re: If you have MDS..Depression in MDS??

To: MosaicDS

Date: Wednesday, August 25, 2010, 2:47 AM

 

Veronique was diagnosed with MDS and ADHD..we dropped the ADHD as the MDS was a

sufficent tag so to speak..until the bullying Nique was far more social then she

is now..I am still struggling to get her to school..and her sleep is major all

over the place. She used to make freinds and loved having all classmates over

for birthdays, but now she finds crowds just way to much and hates people in her

room..she has no friends over to visit..she has put on masses of weight and

become quite sedentary..I am hoping when I visit the states to maybe be able to

talk to some people there as to how to handle what I think is depression and

school phobia in my MDS child..because no one here in Australia seems to know

what to do except look at me..and I am like...huh??..shrug.....I tried

EVERYTHING!!!..rewards, behaviour charts making her stay awke longer, letting

her sleep in, making her go to school(increases anxiety) sedative, antihitimine

she is allergic too..sends

her berko not to sleep, alternative therapies..at his very moment we have

worked thru the massive anxious periods of uncontrollable sobbng and irratioanl

fear and now just trying to get her to sleep soundly instead of waking during

her lighter REM times..all this with no solid help..so any more advise is always

welcome..O and the school on my back casue she isnt going altho I talk to them

everyday...sorry guys tht was a story and a half..but there it is for the moment

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > > ________________________________

> >

> > > > 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

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > >

[Guest guest]

Darlene,

Sorry, i know this discussion is about depression, but there was something in

your email that caught my eye.  I am mom to 14month twins and Maddie both

with mds.  I'm emailing because (who so far has shown no signs physical or

cognitively but was given a diagnosis of 20

> >

> > From: michiganimdsa <michiganimdsa@...

> <michiganimdsa%40yahoo.com>>

> > Subject: Re: If you have MDS..Depression in

> MDS??

> > To: