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> Hi ,

I have to say that I am very lucky to be born in Holland because there are

a lot of facilities for the handicapped to make sure that they are able to

live on their own.

First of all the state provides you with an income if you are invalid for

80/100%. This is not a very high amount but it is for a family 100 % of the

minimum-wage. That's about 1200 EURO per month. This is not including

additional subsidies for rent and child support.

Second, Most of the extra cost you make because of your handicap are

also paid by the state. For example cost for changing the house ( to make

it accessable for a wheelchair )

There are also different types of housing projects. It is possible to rent a

house, made accessable for a wheelchair by the housing corporation.

These corporations are obliged to offer a certain number of accessable

houses.

There are also FOCUS-houses. These are houses where the people can

live on their own but have professional help within their reach 24 hours

per day.

I think there are some more possibilities I don't know about :-)

I am in the position that I live in a house owned by my family so I don't have

these problems but in Holland there is always a way if you want to live

independently.

I used to own my own company but I am not working anymore. I needed

too much energy for work and it wasn't worth it. I have my family now and I

would like to use all my strength to give them a family life as normal as

possible.

I hope I answered your question,

Take care,

Eddy

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Hello Eddy, you have a beautiful family. Congratulations on your little

baby boy, he is very cute.

I'd like to ask again that anyone that could, to please send me pictures and

a short bio. so that my fundraiser will work well. I need alot of people.

Thanks to those that already responded, but I need more! I won't use anyone

without prior permission.

Thanks,

Susi

New member

> Hi guys,

>

> I am already reading this group for a while but I never posted a message.

> First I would like to introduce myself. My name is Eddy and I live in

Holland.

> I have SMA type III. I am living together with my girlfriend and god

blessed

> us with a beautiful baby boy last october. I will also post some pictures

so

> you can imagne a face with a name :-)

> If somebody would like to see my family album, they can see it here :

> http://photos./eddy_thailand

>

> Eddy

>

>

>

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Edna- you can certainly give Bill our e-mail addy.

The MDA coordinator (not sure if that is her exact title) is McGuire; the

# I call to get to her office is 410-494-7072.

I was also given some contacts for " respite care resources " from a case

manager/social worker @ Mt. Washington Pediatric Hospital.

*Developmental Disabilities Administration 410-902-4517

*Abilities Network/Epilepsy Foundation

410-828-7700 or 1-800-492-2523 (headquarters)

*United Cerebral Palsy Assoc.

1-800-451-2452 or 410-484-4540

contact:Arnetta Gibson 410-242-9010 x233

*Creative Options 410-780-4095

contact: Tim Rache, Director of Support Services

*Caring Network 866-227-4644 (toll free)

I have only been in contact with McGuire not any of the other resources

yet. I am not sure exactly what services are available or what Bill might be

looking for but I figured it would give him a starting place. How about

insurance/SSI/ Medicare?

Hope this info is helpful and my apologies for taking so long to get back to

you ~ life is finally getting back to " normal " around here and Callie is doing

great since coming home from her first hospital visit. Praise God!!

new member

Hello!

I am 53 and live in Florida. I met a very wonderful 24 year old young man

on my group for caregivers site. He has SMA and was being cared for

by his grandmother until her recent death. Now he is trying desperately to

find all the services he may be entitled to in Central land.

I am hoping that some of you can help me to help him find out who does what

and how to get things rolling. He has a case manager but he is not very

responsive (that was being kind!). I think your group would be very helpful

to him in many ways.

Please let me know how you got services and what types you have , especially

if you are in land.

Edna

ednawinona@...

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Welcome Therese,

This is a great group of people! I am sure we can teach and learn from each

other. Sounds like you are a busy person. I hope you work out the respite

situation. Our area programs are great about respite, if you aren't working

that is. We are offered, through 4 different agencies, many more hours a

week than we use. I know some people on the list get no respite services.

I'm looking forward to hearing about all of your experiences with .

Gail :-)

Gail-Mom to Seth 6 ds/asd/pica, jo 10 the gymnast, 12 the

pianist, 25 beautiful but a pain, Jen 27 the wallet breaker, Grandma to

Errick 6 ALL boy and wife to , my hero.

<< Hello,

My name is Therese. My daughter , has DS and has recently been

diagnosed with PDD (PDDNOS). I have been tuning into the group posts for the

last few months as we went through the diagnostic process. is 12 years

old and I feel a little guilty that she has just been diagnosed. It was

actually a new teacher this year that suggested that displayed many

autistic behaviors. I found the Disabilities Solutions Issue on DS-ASD and

Joan¹s article and that was a turning point for us. (Thanks Joan!) Up

until then, I knew was not like other DS kids but I didn¹t have a clue

as to why.

We live in Seattle, Washington with Ken (Dad), and ¹s two sisters,

(18 yo- away at college) and (15 yo). attends a

public middle school here in a self-contained classroom that uses

life-skills and visually based communication models. Our big focus

educationally is communication, behaviorally it is getting her to socially

interact with others. is non-verbal and uses a communication device

with some success, especially when highly motivated by things like, ordering

at Mcs, etc. She loves every Disney movie ever made, listening to

music, drawing, cooking, swimming, bowling, boating, going to the ocean

beach and playing with her dog, Cody.

My biggest challenges are handling ¹s care and juggling a full-time job

while my support systems are eroding. My mother in law, who used to be my

³crisis² sitter is now in a nursing home. ( My side of the family all live

1500 miles away.) My oldest daughter, who adores , is now away at

college and my 15 year old helps out but is so involved with her own

activities now that she¹s seldom available. So I need to make that big leap

of faith into getting a respite care system set up soon. I¹m having a tough

time with it.

At first, this dual diagnosis made me very sad but somewhat relieved to

finally know what was really going on with my daughter. It also helps to

know there are other parents out there facing similar challenges. I look

forward to getting to know all of you and your children.

Therese

Mom to (DS-PDD) >>

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Hi Therese,

My name is a and we're neighbors! I live in Everett so I'm maybe a

half hour away. My Hannah will be six on Wednesday and she was diagnosed last

year as being Autistic there at Children's in Seattle. We are also non-verbal

and our big thing that happened at Thanksgiving is that Hannah has finally

learned to suck. She has been using a g-tube since birth for all her liquids.

I can't believe that I actually packed up all the equipment from my kitchen

counter and put it away - the only bad thing is that I'll see less of the UPS

man since he won't be bringing so many medical supplies to the house anymore!

: ) Just kidding ladies!

I also have a 12 year old son who has Tourette's syndrome and

Obsessive-Compulsive Disorder and an almost 8 year old daughter who just has

middle-child syndrome!

Well, glad you're here. Hope you can find the help and support you need.

Blessings,

a

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Welcome to " Stilligan's Island " support group Pat!

It sounds as if you are no stranger to this disease.

I was diagnosed in 1987. (although I had the disease

many years before that.) I am sorry for you that your

remission of 6 years ended, but hopefully with some

of the newer meds now available, you will get back

into another remission, even it it is with meds. What

do you think caused the disease to come back after

6 years??

Isn't it great to find others with this Stills Disease??

Not that we are happy that others are ill..just that it

makes the " dragon " a little easier to drag around

day after day, when we know we aren't doing it alone.

You probably already know how informative, and

wonderful this group is. We even have fun from

time to time.

Where do you live Pat?? Do you live alone or with

family?

Anyhow ...again, welcome!!!

~~tricia~~

Wisconsin

*****************************************************************************

***************

-- new member

Hi my name is Pat, I have been a lurker for the past 3 weeks. I love

this site already. I was diagosned in 1988, by a rhemi, and I really

thought I beat this disease. For those of you out there that think a

remission wont come, please have faith, it very well may...I was in

remission for at least 6 years!!!(you really do lose track when you

are feeling great as to the length of time) I mean a full

remission..no meds..this was after 2 hip surgeries(I had a core

decompression done in both hips) this was due to AVN of both hips

from the high dose of predisone I was on. When I finally came off

that and tried gold shots(had severe reaction) then went to MTX for 2

1/2 years prior to the remission. Gradually after 6 years of a

healthy life, it slowly started to come back. I had my share of

medrol pacs and finally celebrex for the past few years and in Aug of

2002, I really started to flare and have been since. I have started

on remicade in Oct. some improvement, but still have the temps and

fatigue off and on. I dont have mtx in it yet, not sure why..I will

call rhemi tomorrow(hes been away) after everything i have read about

remicade with mtx, maybe that will help.

I just wanted to say Hi to everyone and please hang in there.

Thank you for this web site and for all the sharing it really does

help a lot!(where were you in 1988?)

Pat

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Welcome Pat. It is always good to know there are many that

understand itsn't it? I use the nickname Melt, yes stands for

PattyMelt :0) I have had Stills since 1977, what were you doing

then? In 1988 I was fortunate to be working, and doing well. Since

then I have had more activity also but always hanging in there with

the best attitude I can muster. Enough about me, again Welcome, we

shall look forward to knowing a new friend. Melt in So.Cal.

> Hi my name is Pat, I have been a lurker for the past 3 weeks. I

love

> this site already.

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> Hi Therese....

It's so nice to meet you! We live in Manson, WA on Lake Chelan. I

know there are other Washingtonians on this list also. I hope they

write. My daughter, 7, has not been dx'd with ASD, but shows

many charactaristics. She's doing terrifically though, especially

since we started a bunch of sensory stuff with her. She's verbal,

but hard to understand. Says 2 to 3 word sentences. This group is

great! I hope you'll read and join in a lot. I think we all love to

hear about every one else's kids. We leave for Puerta Villarta

tomorrow, so if I don't respond soon, that's why. WELCOME!

mom to 7 ds, Ty 9 and Kelsey 11.

Hello,

>

> My name is Therese. My daughter , has DS and has recently been

> diagnosed with PDD (PDDNOS). I have been tuning into the group

posts for the

> last few months as we went through the diagnostic process. is

12 years

> old and I feel a little guilty that she has just been diagnosed.

It was

> actually a new teacher this year that suggested that

displayed many

> autistic behaviors. I found the Disabilities Solutions Issue on DS-

ASD and

> Joan¹s article and that was a turning point for us. (Thanks

Joan!) Up

> until then, I knew was not like other DS kids but I didn¹t

have a clue

> as to why.

>

> We live in Seattle, Washington with Ken (Dad), and ¹s two

sisters,

> (18 yo- away at college) and (15 yo).

attends a

> public middle school here in a self-contained classroom that uses

> life-skills and visually based communication models. Our big focus

> educationally is communication, behaviorally it is getting her to

socially

> interact with others. is non-verbal and uses a communication

device

> with some success, especially when highly motivated by things like,

ordering

> at Mcs, etc. She loves every Disney movie ever made,

listening to

> music, drawing, cooking, swimming, bowling, boating, going to the

ocean

> beach and playing with her dog, Cody.

>

> My biggest challenges are handling ¹s care and juggling a full-

time job

> while my support systems are eroding. My mother in law, who used

to be my

> ³crisis² sitter is now in a nursing home. ( My side of the family

all live

> 1500 miles away.) My oldest daughter, who adores , is now away

at

> college and my 15 year old helps out but is so involved with her own

> activities now that she¹s seldom available. So I need to make that

big leap

> of faith into getting a respite care system set up soon. I¹m

having a tough

> time with it.

>

> At first, this dual diagnosis made me very sad but somewhat

relieved to

> finally know what was really going on with my daughter. It also

helps to

> know there are other parents out there facing similar challenges.

I look

> forward to getting to know all of you and your children.

>

> Therese

>

> Mom to (DS-PDD)

>

>

>

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Hi Tricia, I really dont know what caused the remission to end...I

asked myself that question over and over..work? sadness..I have 2

close friends that lost their son(17 yrs old) and the other one lost

her son in law of 5 months. . so there was a lot of sadness, Im not

sure...buts its back... I live in MA with my husband of 30 years(this

Oct.)and my 16 yr old daughter. I have 2 sons that live next door to

me, one is married. Its nice to have someone to talk to about the

illness..

Thank you for welcoming me to the group...How about your self ..do

you live with family?

Bye for now

Pat

>

> Welcome to " Stilligan's Island " support group Pat!

> It sounds as if you are no stranger to this disease.

> I was diagnosed in 1987. (although I had the disease

> many years before that.) I am sorry for you that your

> remission of 6 years ended, but hopefully with some

> of the newer meds now available, you will get back

> into another remission, even it it is with meds. What

> do you think caused the disease to come back after

> 6 years??

>

> Isn't it great to find others with this Stills Disease??

> Not that we are happy that others are ill..just that it

> makes the " dragon " a little easier to drag around

> day after day, when we know we aren't doing it alone.

>

> You probably already know how informative, and

> wonderful this group is. We even have fun from

> time to time.

>

> Where do you live Pat?? Do you live alone or with

> family?

>

> Anyhow ...again, welcome!!!

>

> ~~tricia~~

>

> Wisconsin

>

>

]

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Hi melt, thanks for the welcome, yes it is good to know that there

are people who understand the illness..1977..hmmmmm.I had just had my

first son in 1976....

...did they dx you right away? Im just interested because it took my

primary care forever to refer me to a rhemy, who by the way dx me

almost immed.

I also look forward to making many new friends here and enjoying your

company.

thanks,Pat

> > Hi my name is Pat, I have been a lurker for the past 3 weeks. I

> love

> > this site already.

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Welcome Pat!!!!!!

Better late then never, ( regarding 1988)These people are fabulous, and

nuts. { in a good way of course.} Let me know if you need anything!

See ya around the wading pool.

G.otF.M.

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Hi Pat, you can reply to a message or post a new one but the easiest is to

reply to someone's post but remember to trim the message to the part you are

answering and delete the rest so the new email doesn't compile so much

clutter in others mail boxes.

Yes, my doctors called in my rheumy after 2 1/2 weeks in the hospital and he

diagnosed me right away. He was from San Diego, CA and except for a couple

of years when I moved has been my doctor, my savior ever since. With the

new medications maybe yours and mine will settle down again. I really do

believe stress is a major factor with this disease. Till soon, Melt

Re: new member

> ..did they dx you right away? Im just interested because it took my

> primary care forever to refer me to a rhemy, who by the way dx me

> almost immed.

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Hello Pat,

and a very special welcome to you and I am glad that you have joined this

incredible support group. I am so sorry that you have been dealing with

Stills for so long, but it was very comforting to read that you have also

experienced a remission time of 6 years. I will remember those words and

hope for the same. Thank you for being so positive. I look forward to

getting to know you better.

Sincerely, Sue #2

-- new member

Hi my name is Pat, I have been a lurker for the past 3 weeks. I love

this site already. I was diagosned in 1988, by a rhemi, and I really

thought I beat this disease. For those of you out there that think a

remission wont come, please have faith, it very well may...I was in

remission for at least 6 years!!!(you really do lose track when you

are feeling great as to the length of time) I mean a full

remission..no meds..this was after 2 hip surgeries(I had a core

decompression done in both hips) this was due to AVN of both hips

from the high dose of predisone I was on. When I finally came off

that and tried gold shots(had severe reaction) then went to MTX for 2

1/2 years prior to the remission. Gradually after 6 years of a

healthy life, it slowly started to come back. I had my share of

medrol pacs and finally celebrex for the past few years and in Aug of

2002, I really started to flare and have been since. I have started

on remicade in Oct. some improvement, but still have the temps and

fatigue off and on. I dont have mtx in it yet, not sure why..I will

call rhemi tomorrow(hes been away) after everything i have read about

remicade with mtx, maybe that will help.

I just wanted to say Hi to everyone and please hang in there.

Thank you for this web site and for all the sharing it really does

help a lot!(where were you in 1988?)

Pat

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Hello Pat and welcome im also fairly new to group just DX in early oct.To answer

where was i in 1988 well i was 12 yrs old and bundle of energy i was prob

everywhere!!!!! d.Canada

new member

Hi my name is Pat, I have been a lurker for the past 3 weeks. I love

this site already. I was diagosned in 1988, by a rhemi, and I really

thought I beat this disease. For those of you out there that think a

remission wont come, please have faith, it very well may...I was in

remission for at least 6 years!!!(you really do lose track when you

are feeling great as to the length of time) I mean a full

remission..no meds..this was after 2 hip surgeries(I had a core

decompression done in both hips) this was due to AVN of both hips

from the high dose of predisone I was on. When I finally came off

that and tried gold shots(had severe reaction) then went to MTX for 2

1/2 years prior to the remission. Gradually after 6 years of a

healthy life, it slowly started to come back. I had my share of

medrol pacs and finally celebrex for the past few years and in Aug of

2002, I really started to flare and have been since. I have started

on remicade in Oct. some improvement, but still have the temps and

fatigue off and on. I dont have mtx in it yet, not sure why..I will

call rhemi tomorrow(hes been away) after everything i have read about

remicade with mtx, maybe that will help.

I just wanted to say Hi to everyone and please hang in there.

Thank you for this web site and for all the sharing it really does

help a lot!(where were you in 1988?)

Pat

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Hi Pat,

Stress is what brought me out of a nice remission back

in 1979. Sounds like you have a very nice family, and

I'm glad your sons live next door. If you'd like to read

about my " history " please go to www.stillsdisease.org

and click on " member histories " and then click on

" Tricia Looker. " I look forward to getting to know you

better!

~~tricia~~

Wisconsin

*****************************************************************************

**********

Hi Tricia, I really dont know what caused the remission to end...I

asked myself that question over and over..work? sadness..I have 2

close friends that lost their son(17 yrs old) and the other one lost

her son in law of 5 months. . so there was a lot of sadness, Im not

sure...buts its back... I live in MA with my husband of 30 years(this

Oct.)and my 16 yr old daughter. I have 2 sons that live next door to

me, one is married. Its nice to have someone to talk to about the

illness..

Thank you for welcoming me to the group...How about your self ..do

you live with family?

Bye for now

Pat

..

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Hi Pat,

Stress is what brought me out of a nice remission back

in 1979. Sounds like you have a very nice family, and

I'm glad your sons live next door. If you'd like to read

about my " history " please go to www.stillsdisease.org

and click on " member histories " and then click on

" Tricia Looker. " I look forward to getting to know you

better!

~~tricia~~

Wisconsin

*****************************************************************************

**********

Hi Tricia, I really dont know what caused the remission to end...I

asked myself that question over and over..work? sadness..I have 2

close friends that lost their son(17 yrs old) and the other one lost

her son in law of 5 months. . so there was a lot of sadness, Im not

sure...buts its back... I live in MA with my husband of 30 years(this

Oct.)and my 16 yr old daughter. I have 2 sons that live next door to

me, one is married. Its nice to have someone to talk to about the

illness..

Thank you for welcoming me to the group...How about your self ..do

you live with family?

Bye for now

Pat

..

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Hi Judy,

My name is Carmen and welcome to our family. I went through a zillion and

one tests at home and then was sent to Mayo Clinic where they finally

diagnosed me with Stills Disease. That was seven years ago and I've had a

few remissions but since last year, no more.... :o(

I find that Prednisone does the best for me. I am currently taking

Prednisone, MTX and Enbrel. I tried Remicade and it did not work at all. It

will probably be a hit and miss for you like all of us. You'll find the

right drug or drugs, hopefully.

I'm glad to read that you've been pulling up our posts and it is reassuring

to find that others are going through what you are and there is so much help

and understanding in this group. Let us know how you are faring from time to

time. Join our chats also.

xxoo

Ca. Carmen

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Hi again, Judy,

I forgot to ask you where you live? I'm in Palm Spring, California, down in

the desert and Pattymelt is just above me on top of the mountain.

xxoo

Ca. Carmen

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Dear Judy,

Welcome to the group! Though I'm sorry you had to find us! I am 35 and was

diagnosed this past summer after being sick for the previous year. This

group has been extremely supportive and full of advice.

I don't know much about Remicade, and I'm sure there are others here who do

know a lot. But I know the different drugs I'm on (Methotrexate and

Plaquenil among others) took a long time to become effective. It is possible

that the same is with Remicade. maybe someone out there reading this

knows...or has your doctor said anything about how quickly it should bring

you relief? I know that after feeling sick for so long I wanted to feel

better QUICKLY! But it was helpful to know that it would take a while before

there was an obvious effect. I am also on Prednisone and that helped my

inflammation and pain quickly.

Please feel free to share more with the group, as you wish. I hope you get a

lot of pain relief soon!

Feel good,

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Hi Judy,

My name is Dave and I would like to welcome you to our Support Group.

Any time you need to " VENT " you can do it with us thats what our great group

is all about. Take care. I hope you feel better. And welcome again !!

Sincerely Dave,

from South Florida

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Brrrrrrrr....Judy. I see where the East has been hit hard with freezing

weather. My son leaves for work around 6:30 in the morning and says it's

been below zero for the last week. He's in Michigan where we spend the

summers but have stayed longer so my husband can do some snowmobiling. I

stay in the house and read.. :o)

I shall try and blow some warm air your way. It was 85 today which is a bit

too hot for me to do anything outside. It gets to be around 120 in the

summer so we take off from here around April. Just in time to enjoy all the

spring flower.....TULIPS......are you reading this, Sue? :o) My favorite

time of year!

Stay warm,

xxoo,

Ca. Carmen

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Carmen

Thanks for the email. I am from Collegeville, PA. It's been below

freezing for the past two weeks. The desert sounds great to me.

Judy Moyer, Paralegal

Villanova University School of Law

Farmworkers Legal Aid Clinic/Civil Justice Clinic

Phone: 610-519-4123

Fax: :610-519-5173

E-mail: moyer@...

The contents of this e-mail message and any attachments are intended

solely for the addressee(s) named in this message. This communication

is intended to be and to remain confidential and may be subject to

applicable attorney/client and/or work product privileges. If you are

not the intended recipient of this message, or if this message has been

addressed to you in error, please immediately alert the sender by reply

e-mail and then delete this message and its attachments. Do not

deliver, distribute or copy this message and/or any attachments and if

you are not the intended recipient, do not disclose the contents or take

any action in reliance upon the information contained in this

communication or any attachments.

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Welcome Judy!

So, reading our posts has helped to keep you sane??

Okay then..we are doing better than expected!

It does sound as if you have the AOSD. I think it's

kind of a good thing to have a doc who's wife has

the disease. He should want to learn everything he

can about it. Do you have any idea if his wife is

familiar with this support group?? They both

might appreciate looking through the listed info

on the site. www.stills.org

I have not been on the Remicade. There are several

members who are. I do think that it sometimes takes

a few weeks to see/feel results. If it turns out that

the Remicade does nothing, then I am sure your doctor

will change you to something else. Did he happen to tell

you what his wife is on?

Where do you live Judy?? It's kind of interesting for

us to sort of picture in our minds where the person is

living.

Again, welcome!!!!

~~tricia~~

Wisconsin

-- New Member

Hello All,

My name is Judy Moyer, I am 39 years old. In July of 2002 I became

very fatigued with muscle and joint pain. After my blood test (CBC)

done by my primary dr. came back he said he suspected AOSD. (his wife

also has it). He immediately started me on pred and sent me to his

wife's RD. The RD sent me for every test (i.e. gastro, scans) under

the sun (which all came back normal). It seems that since I don't

have the rash and my ferritin level is only 2L but I have all other

symthoms he hasn't officialy diagnosis Stills. I started Remicade

last week still not any better. I have been a lurker since July. It

has kept me sane to know other people are feeling the same way and

not realy crazy. -My Birthday Feb. 12

Judy

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hi therese and katie!!! IT is hard with supportive comunity living, respite,

medcaid, mrhome health aids, often i catch myself thinking or worring about

nathan but one thing is it does help!!!! The only problems we are running

into is summer hoursfor june and july, cause its at least 8-9weeks of

mon-fri 7am - 5pm cares, and nathan is getting the max alloted, so now im

am furthering my degree for more $$$ so i can take off or cut to part part

time just for those couple months. I am getting worried, cause he is 11

turning 12 this summer and too old for day care one, grandma cant handle him

for too long of a period (a couple hours ) anymore, and in todays financing

most families need two incomes. I too often struggle between his cares and

my personal goals/roles. In fact at my last work review i had all great and

some commendables for points the ONLY bad thing to work on was taking many

days off for ill son. SO i did remeind them and they wrent unhappy or

anything they just have to keep everything how it is.... on paper, and it

gives us something to work towards to i guess. shawna.

New Member

Hello,

My name is Therese. My daughter , has DS and has recently been

diagnosed with PDD (PDDNOS). I have been tuning into the group posts for the

last few months as we went through the diagnostic process. is 12 years

old and I feel a little guilty that she has just been diagnosed. It was

actually a new teacher this year that suggested that displayed many

autistic behaviors. I found the Disabilities Solutions Issue on DS-ASD and

Joan¹s article and that was a turning point for us. (Thanks Joan!) Up

until then, I knew was not like other DS kids but I didn¹t have a clue

as to why.

We live in Seattle, Washington with Ken (Dad), and ¹s two sisters,

(18 yo- away at college) and (15 yo). attends a

public middle school here in a self-contained classroom that uses

life-skills and visually based communication models. Our big focus

educationally is communication, behaviorally it is getting her to socially

interact with others. is non-verbal and uses a communication device

with some success, especially when highly motivated by things like, ordering

at Mcs, etc. She loves every Disney movie ever made, listening to

music, drawing, cooking, swimming, bowling, boating, going to the ocean

beach and playing with her dog, Cody.

My biggest challenges are handling ¹s care and juggling a full-time job

while my support systems are eroding. My mother in law, who used to be my

³crisis² sitter is now in a nursing home. ( My side of the family all live

1500 miles away.) My oldest daughter, who adores , is now away at

college and my 15 year old helps out but is so involved with her own

activities now that she¹s seldom available. So I need to make that big leap

of faith into getting a respite care system set up soon. I¹m having a tough

time with it.

At first, this dual diagnosis made me very sad but somewhat relieved to

finally know what was really going on with my daughter. It also helps to

know there are other parents out there facing similar challenges. I look

forward to getting to know all of you and your children.

Therese

Mom to (DS-PDD)

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