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Welcome Beverley

It sounds like you have a very interesting job and are doing some really

good work in enabling others to understand the wider implications of the

public health agenda.

I would like to add something to your comments on public health only being

able to function effectively if it reclaims the vision that improving health

starts with people, families and communities.

In the development work I am doing with Trusts especially with health

visitors and school nurses, I am clear that they can only deliver the

described family cented puiblic health funcion if they are enabled to work

with families and communities rather that the present 1:1 work across a wide

area which results from GP attachment. I am aware that there is a

contradiction in some of the policy with the public health/health visiting

linked agenda moving practitoners into communites and the primary care/ GP

linked policy seeing everyone being part an integrated primary care team.

I am finding a number of chief executive and senior managers in PCT to be

quite hung up on the integrated team agenda and failing to recognise the

wider public health funtion as you describe. I know there is an issue about

the power of GPS

and like you am working hard to get them to see the wider agenda and using

the policy and the HV and SN development packs to support my arguments. for

me there is some movement but I know it is really hard for those in practice

when I say one thing and the powers that be the opposite. There seems to be

this false assumption that General Practice has got it right and when I say

things like " geneal practice and primary care will look very different in

five years time " generally again that is a diffciult concept for people.

There is so much work to do to help people live healthy lives and I to see

primary care nurses and health vistors as a key.

However they need to be allowed to stand on their own and not feel beholden

to general practice - the realtionships built up over the years will survive

and the good practcies will like the HVs will ensure it works.

After all it is the client and the community who should be central to this

not the practioners.

Regards

Margaret

New member

> Hello all.

>

> My name is Beverley and I am employed as Public Health Nurse at

Rotherham HA (to be Rotherham PCT from April).

>

> My background is a midwife, but I have been working in management,

training and commissioning for some time now. I worked for Sheffield Health

Authority as a health promotion specialist, eventually doing a lot of

children's and nursing/midwifery policy work (more than the health

promotion). I went on the Trent non-medical public health specialist

training, worked as D/Dir Health promotion here before getting the PHN post.

I have a post-grad dip in HP, adult ed qualification and am almost completed

my Masters in Public Health. I am currently on the National Public Health

Leadership programme.

>

> I would describe myself as a primary care focused public health

specialist. My post involves developing and leading the public health

nursing function and I have done quite a bit of work this year on

influencing my medical colleagues about the necessity of developing a joined

up public health workforce with public health practitioners as a valued and

integrated part and partnership key to reducing inequalities and improving

health. An uphill struggle initially, but I am winning the argument. I am

passionate that public health can only function effectively if it reclaims

the vision that improving health starts with people, families and

communities (rather than statistics and policy). I see primary care and

nurses as key to this. Health visitors were central to public health and

must be again, if public health is going to turn itself round from the very

sterile route it took.

>

> Like to here from other who are in a similar role (or rant along similar

lines!).

>

> If there are plans to get this rolling study day/conference programme

going I would be very happy to participate. I have contacted colleagues in

the region to see if they are interested in hosting something here.

>

> All the best.

>

> Bev

>

>

>

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  • 2 months later...
Guest guest

In a message dated 4/14/2002 4:08:03 PM Eastern Daylight Time,

egg_philosopher@... writes:

> So if I can

> provide any help, or if one just wants to vent about the system, or

> if anyone has any ideas on how I can do my job better, I would love

> to hear them.

Hi Devrey,

Welcome to the group. We all need ideas on dealing with behaviors! You have a

tough job.

Charlyne

Mom to Zeb 9 DS/OCD ?

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Welcome , you shall find a few of us here. I have found these groups

very valuable. I get like 50 emails a day from different Autistic groups

that i am a member on. You sure do learn alot. i have 3 kids, the middle

one, Hannah will be 8 in October, and she is classed as HFA, High

functioning Autistic, she has come along way. She is in regular school with

a government funded teachers aide for 2 hours a day, she will have her bad

days too, but things are ok i guess. socially, still a very long way to go,

and speech wise as well, cognitive, is still way behind. But she has learned

to read and write, and that is such a releif, as i really wanted her to be

able to do those things, as i beleive this will open up so much for her in

the future. We are in australia, the school you have enrolled your daughter

in sounds fantastic.........don;t think there is anything that resembles

that over here. Hope to hear more from you. Cheryl S

New Member

Hello. My name is . I have a 7 (almost not quite 8 lol) year

old daughter w/asperger's syndrome. She is an absolute angel.

People ask how I manage to live with an autistic child. I simply

smile and say, " The fact that she is alive, healthy *now*, learning

and growing in so many ways...she's a blessing in my life...not a

chore or a challenge. " You see, Lily was born in complete cardiac

failure. She wasn't blue, she was grey going black. They brought

her back but a week later was in another heart failure. She had

this heart syndrome (not found till the second failure) that

shouldn't have caused her such problems. Most people that have it

never know they have it until routine ekg's later in life (40's and

50's)...but it was making her weak and tired all the time. The

syndrome was corrected in a complex procedure at Duke University

when she was 18 mos old. There I was finally validated when doctors

said YES she also has apnea secondary to gastric reflux...she wasn't

breathing hardly at all when she slept...I had been telling doctors

this since her birth..but what do WE know, right? :-) That's under

control now too. She also has vaso vagal syncope. It's something

to do w/adrenaline rushes/blood pressure. Not too serious. Just

have to be sure she is kept hydrated and give her open season on the

salt shaker...lol. Soooo, you see, it took many doctors sorting

thru SOOO many problems that she wasn't diagnosed w/autism till she

was 6. Tho *I* knew she was dealing w/something more serious than

being " behind because her body was fighting all these other

conditions...let her be, she'll catch up... " . You don't " catch up "

exactly with autism, do you? (rolling my eyes). Thankfully, my

beautiful little girl is now the healthiest of my family! I just

moved four months ago and enrolled her in a fantastic school that

has a self-contained classroom for high functioning autistic kids.

She is such a different child now!! The teachers are amazing! The

kids in the " typical " classes are so great with her!! We have our

bad days, of course...if it rains, she cries for her " sun to come

back out " ...thinks everyone is being mean if they're simply joking

around..you know, the whole LITERAL thing autistic kids have issues

with. But overall, life has gotten easier w/the actual diagnosis.

She'll be going to a daycamp this summer to keep her social skills

going..it's run by the autism society. She's on a waiting list for

a week long camp for high functioning kids. (I almost hope she won't

get in...selfish me!! lol).

I've rambled on enuf. It's just nice to find someplace to " meet "

other parents who KNOW what it is I deal with on a daily basis..and

KNOW the blessings we've been given with our special child. I've

learned compassion and determination on a level I never knew I had!

God bless!

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Hey Charlyne,

Thank you so much for the welcome. I was a bit

unsure of how the group would take a behavior

specialist joining up, but my intentions are good. I

enjoy my job but the politics that are invovled make

it hard to make a difference in the field.

I do think that all of the parents have a bit of

tougher job than I do. I want to let you all know that

I have been reading the e-mails and I think all of you

are doing a wonderful job. Unfortunately most of the

people I work with have come from institutions that

abused and mistreated them for most of their lives. My

heart breaks when I think of all of the things that

have been done to them and I can understand why their

behaviors occur.

Here is a question for all of you. I need to write

a protocal for one of the people I work with on

sleeping. He usually stays up late and falls asleep on

the couch. Staff at this home are having a hard time

getting him to his bed and due to the regulations we

follow, we cannot make him go to his bed. Are there

any ideas for helping him feel more comfortable

sleeping in his own bed?

Thanks,

Devrey

>

> Hi Devrey,

> Welcome to the group. We all need ideas on dealing

> with behaviors! You have a

> tough job.

> Charlyne

> Mom to Zeb 9 DS/OCD ?

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

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Hey Charlyne,

Thank you so much for the welcome. I was a bit

unsure of how the group would take a behavior

specialist joining up, but my intentions are good. I

enjoy my job but the politics that are invovled make

it hard to make a difference in the field.

I do think that all of the parents have a bit of

tougher job than I do. I want to let you all know that

I have been reading the e-mails and I think all of you

are doing a wonderful job. Unfortunately most of the

people I work with have come from institutions that

abused and mistreated them for most of their lives. My

heart breaks when I think of all of the things that

have been done to them and I can understand why their

behaviors occur.

Here is a question for all of you. I need to write

a protocal for one of the people I work with on

sleeping. He usually stays up late and falls asleep on

the couch. Staff at this home are having a hard time

getting him to his bed and due to the regulations we

follow, we cannot make him go to his bed. Are there

any ideas for helping him feel more comfortable

sleeping in his own bed?

Thanks,

Devrey

>

> Hi Devrey,

> Welcome to the group. We all need ideas on dealing

> with behaviors! You have a

> tough job.

> Charlyne

> Mom to Zeb 9 DS/OCD ?

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

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Guest guest

Dervey:

What makes him want to sleep on the couch? Is there a tv there? What is he

doing when he falls asleep?

If he's watching TV, you might use a tv near bed one way to try.

YOu can also write a social script with photos about the bed time routine.

As you know , you will want some really enticing reward for any attempt to

sleep in his bed to start.

Does he follow a schedule? Is the schedule visually available?

Our son used to fall asleep down stairs on the couch too. It has taken

about a year,b ut now he prefers to go to sleep upstairs in his bed. But

someone has to BE there when he falls asleep. Usually we end up modeling

the expected behavior (read: we fall asleep on the floor next to the bed).

Keep us posted--and welcome. I've been really busy and didn't see your

first post. All we ask of nonparent professionals is to respect that we're

dealing with our families and forgive us if we rant and rave. :) You sound

perfectly able to do that. :)

take care,

Joan

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Guest guest

Dervey:

What makes him want to sleep on the couch? Is there a tv there? What is he

doing when he falls asleep?

If he's watching TV, you might use a tv near bed one way to try.

YOu can also write a social script with photos about the bed time routine.

As you know , you will want some really enticing reward for any attempt to

sleep in his bed to start.

Does he follow a schedule? Is the schedule visually available?

Our son used to fall asleep down stairs on the couch too. It has taken

about a year,b ut now he prefers to go to sleep upstairs in his bed. But

someone has to BE there when he falls asleep. Usually we end up modeling

the expected behavior (read: we fall asleep on the floor next to the bed).

Keep us posted--and welcome. I've been really busy and didn't see your

first post. All we ask of nonparent professionals is to respect that we're

dealing with our families and forgive us if we rant and rave. :) You sound

perfectly able to do that. :)

take care,

Joan

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Guest guest

Hi

Welcome to the list! My name is Tracey and I have two daughters. Our

oldest is Coral and she is 11 (12 in July) and our youngest is Skylar

age 91/2. Skylar was diagnosed as autistic at the age of 3. She

attends a regular class with a full time Educational Assistant (whom we

all adore). She is doing great and we have wonderful services where I

live, even though it is a small town Your daughter's school sounds

wonderful and so does your daughter. Glad to have you with us.

Tracey

Lilybugs wrote:

> Hello. My name is . I have a 7 (almost not quite 8 lol) year

> old daughter w/asperger's syndrome. She is an absolute angel.

> People ask how I manage to live with an autistic child. I simply

> smile and say, " The fact that she is alive, healthy *now*, learning

> and growing in so many ways...she's a blessing in my life...not a

> chore or a challenge. " You see, Lily was born in complete cardiac

> failure. She wasn't blue, she was grey going black. They brought

> her back but a week later was in another heart failure. She had

> this heart syndrome (not found till the second failure) that

> shouldn't have caused her such problems. Most people that have it

> never know they have it until routine ekg's later in life (40's and

> 50's)...but it was making her weak and tired all the time. The

> syndrome was corrected in a complex procedure at Duke University

> when she was 18 mos old. There I was finally validated when doctors

> said YES she also has apnea secondary to gastric reflux...she wasn't

> breathing hardly at all when she slept...I had been telling doctors

> this since her birth..but what do WE know, right? :-) That's under

> control now too. She also has vaso vagal syncope. It's something

> to do w/adrenaline rushes/blood pressure. Not too serious. Just

> have to be sure she is kept hydrated and give her open season on the

> salt shaker...lol. Soooo, you see, it took many doctors sorting

> thru SOOO many problems that she wasn't diagnosed w/autism till she

> was 6. Tho *I* knew she was dealing w/something more serious than

> being " behind because her body was fighting all these other

> conditions...let her be, she'll catch up... " . You don't " catch up "

> exactly with autism, do you? (rolling my eyes). Thankfully, my

> beautiful little girl is now the healthiest of my family! I just

> moved four months ago and enrolled her in a fantastic school that

> has a self-contained classroom for high functioning autistic kids.

> She is such a different child now!! The teachers are amazing! The

> kids in the " typical " classes are so great with her!! We have our

> bad days, of course...if it rains, she cries for her " sun to come

> back out " ...thinks everyone is being mean if they're simply joking

> around..you know, the whole LITERAL thing autistic kids have issues

> with. But overall, life has gotten easier w/the actual diagnosis.

> She'll be going to a daycamp this summer to keep her social skills

> going..it's run by the autism society. She's on a waiting list for

> a week long camp for high functioning kids. (I almost hope she won't

> get in...selfish me!! lol).

> I've rambled on enuf. It's just nice to find someplace to " meet "

> other parents who KNOW what it is I deal with on a daily basis..and

> KNOW the blessings we've been given with our special child. I've

> learned compassion and determination on a level I never knew I had!

> God bless!

>

>

>

>

>

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Guest guest

devry, is there anyway to make his room more inviting, maybe let him have a tv

in his room, annd/or exchange a decent size couch for his bed in his room. what

i do if my son natha chooses tv for his reward for getting ready for bed is

iether get a 30min. video on for him, or set the tv's timer for 30 minutes---and

most tvs start out at 120minutes i do beleive, one could slowly shorten the tv

time. Seeping is always a big issues with many of our kids, there is a great

book out there something like " Sleeping Better " " A guide for parents of disabled

children " cant remember who its by, barrowed it awhile back from the University

of Iowa, Disability Resource Library, they have an online thing too where they

will send you books and you send them back when can or if they need them back. I

will try to find the web address for you. shawna.

Re: new member

Hey Charlyne,

Thank you so much for the welcome. I was a bit

unsure of how the group would take a behavior

specialist joining up, but my intentions are good. I

enjoy my job but the politics that are invovled make

it hard to make a difference in the field.

I do think that all of the parents have a bit of

tougher job than I do. I want to let you all know that

I have been reading the e-mails and I think all of you

are doing a wonderful job. Unfortunately most of the

people I work with have come from institutions that

abused and mistreated them for most of their lives. My

heart breaks when I think of all of the things that

have been done to them and I can understand why their

behaviors occur.

Here is a question for all of you. I need to write

a protocal for one of the people I work with on

sleeping. He usually stays up late and falls asleep on

the couch. Staff at this home are having a hard time

getting him to his bed and due to the regulations we

follow, we cannot make him go to his bed. Are there

any ideas for helping him feel more comfortable

sleeping in his own bed?

Thanks,

Devrey

>

> Hi Devrey,

> Welcome to the group. We all need ideas on dealing

> with behaviors! You have a

> tough job.

> Charlyne

> Mom to Zeb 9 DS/OCD ?

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

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Guest guest

oh yaa, im glad there are many of us here to hlep, nathan uses pic schedules

too, this hleps remind him wht to do, and for his reward when its time to start

his nite time routine bath and all, and he often will refuse if we say ok time

to go take your bath etc etc, but if we ask, do you want to watch.....(a certain

show or fav video-eg. scooby video) or play a game? he will choose, and then we

say ok hurry go take your bath and then ......what everhe chose, it works very

well, we got this from his biobehavior team at UIHC. llots of luck shawna

Re: new member

Dervey:

What makes him want to sleep on the couch? Is there a tv there? What is he

doing when he falls asleep?

If he's watching TV, you might use a tv near bed one way to try.

YOu can also write a social script with photos about the bed time routine.

As you know , you will want some really enticing reward for any attempt to

sleep in his bed to start.

Does he follow a schedule? Is the schedule visually available?

Our son used to fall asleep down stairs on the couch too. It has taken

about a year,b ut now he prefers to go to sleep upstairs in his bed. But

someone has to BE there when he falls asleep. Usually we end up modeling

the expected behavior (read: we fall asleep on the floor next to the bed).

Keep us posted--and welcome. I've been really busy and didn't see your

first post. All we ask of nonparent professionals is to respect that we're

dealing with our families and forgive us if we rant and rave. :) You sound

perfectly able to do that. :)

take care,

Joan

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

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our kids. Share favorite bookmarks, ideas, and other information by including

them. Don't forget, messages are a permanent record of the archives for our

list.

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

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Guest guest

In a message dated 4/21/02 7:50:13 PM Central Daylight Time,

writes:

> Even though those that I work with are not my children

> there is a high level of attatchment that I deal with

> on a daily basis. There are a lot of people who have

> told me not to get attatched, but I don't know how to

> work in this field without caring about those that I

> work with.

>

Devrey,

Yes, be careful or you may bring one home with you like I did. LOL!!! It

definitely makes life interesting. I was very close to some of my clients.

Goodness, I was involved in raising two of them for 8 years of their

childhoods. I still miss them.

Karyn

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Guest guest

a,

That is a great idea. I am not sure if he has a T.V.

in his room, I don't think so. But I should look into

making his room a fun place to spend time. For a long

time while he was sick he would not come out of his

room and now that he is feeling better he doesn't want

to go in. He has also started other behaviors since

feeling better such as not wanting to get out of the

van after a ride and at times he will smear feces. I

am not sure why the feces smearing began but I have to

come up with a program or protocal for the staff to

follow when he does. Thanks for the sleeping ideas I

will try those.

Thanks a,

Devrey

--- greenpak <greenpak@...> wrote:

> devry, is there anyway to make his room more

> inviting, maybe let him have a tv in his room,

> annd/or exchange a decent size couch for his bed in

> his room. what i do if my son natha chooses tv for

> his reward for getting ready for bed is iether get a

> 30min. video on for him, or set the tv's timer for

> 30 minutes---and most tvs start out at 120minutes i

> do beleive, one could slowly shorten the tv time.

> Seeping is always a big issues with many of our

> kids, there is a great book out there something like

> " Sleeping Better " " A guide for parents of disabled

> children " cant remember who its by, barrowed it

> awhile back from the University of Iowa, Disability

> Resource Library, they have an online thing too

> where they will send you books and you send them

> back when can or if they need them back. I will try

> to find the web address for you. shawna.

> Re: new member

>

>

> Hey Charlyne,

> Thank you so much for the welcome. I was a bit

> unsure of how the group would take a behavior

> specialist joining up, but my intentions are good.

> I

> enjoy my job but the politics that are invovled

> make

> it hard to make a difference in the field.

> I do think that all of the parents have a bit

> of

> tougher job than I do. I want to let you all know

> that

> I have been reading the e-mails and I think all of

> you

> are doing a wonderful job. Unfortunately most of

> the

> people I work with have come from institutions

> that

> abused and mistreated them for most of their

> lives. My

> heart breaks when I think of all of the things

> that

> have been done to them and I can understand why

> their

> behaviors occur.

> Here is a question for all of you. I need to

> write

> a protocal for one of the people I work with on

> sleeping. He usually stays up late and falls

> asleep on

> the couch. Staff at this home are having a hard

> time

> getting him to his bed and due to the regulations

> we

> follow, we cannot make him go to his bed. Are

> there

> any ideas for helping him feel more comfortable

> sleeping in his own bed?

>

> Thanks,

> Devrey

>

> >

> > Hi Devrey,

> > Welcome to the group. We all need ideas on

> dealing

> > with behaviors! You have a

> > tough job.

> > Charlyne

> > Mom to Zeb 9 DS/OCD ?

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

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Guest guest

Dear Joan,

Thanks for the advice with the sleeping schedule and

routines. I appreciate it. It is so nice to get

feed-back from people who live and care about those

with Autism and disabilities. I have a great respect

for parents who care for children with disabilities.

Even though those that I work with are not my children

there is a high level of attatchment that I deal with

on a daily basis. There are a lot of people who have

told me not to get attatched, but I don't know how to

work in this field without caring about those that I

work with.

I really enjoy reading everyones stories and trials

and tribulations. It gives me a lot of great ideas on

how to work with the people I serve. So feel free to

rant and rave because I am always here to listen.

Especially if you have issue with the rules and

regulations since I have to deal with those every day.

Thanks Joan,

Devrey

--- Joan Guthrie Medlen <joan@...>

wrote:

> Dervey:

>

> What makes him want to sleep on the couch? Is there

> a tv there? What is he

> doing when he falls asleep?

>

> If he's watching TV, you might use a tv near bed one

> way to try.

>

> YOu can also write a social script with photos about

> the bed time routine.

> As you know , you will want some really enticing

> reward for any attempt to

> sleep in his bed to start.

>

> Does he follow a schedule? Is the schedule visually

> available?

>

> Our son used to fall asleep down stairs on the couch

> too. It has taken

> about a year,b ut now he prefers to go to sleep

> upstairs in his bed. But

> someone has to BE there when he falls asleep.

> Usually we end up modeling

> the expected behavior (read: we fall asleep on the

> floor next to the bed).

>

> Keep us posted--and welcome. I've been really busy

> and didn't see your

> first post. All we ask of nonparent professionals is

> to respect that we're

> dealing with our families and forgive us if we rant

> and rave. :) You sound

> perfectly able to do that. :)

>

> take care,

> Joan

>

>

__________________________________________________

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Guest guest

Karyn,

There have been times when this thought has occured.

I actually almost stopped working in this field a

couple of years ago. I was working in a group home at

the time and one of the men that I cared for past away

while I was with him. He had cancer and was not

diagnosed with it until too late. We knew that he was

going to pass away so I spent the evening with him and

he died very peacefully. It was alot to handle and did

break my to heart to the point that I was questioning

whether or not I wanted to continue working in this

field. I'm glad I am still working with people with

disabilities. It is a fun job. Keeps you on your toes

(ha).

Devrey

> >

>

> Devrey,

> Yes, be careful or you may bring one home with you

> like I did. LOL!!! It

> definitely makes life interesting. I was very close

> to some of my clients.

> Goodness, I was involved in raising two of them for

> 8 years of their

> childhoods. I still miss them.

>

> Karyn

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

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Guest guest

We are glad there are caring good people out there like Karyn and Devrey, I know

how thankful is too, Dawn, s mom

Re: new member

In a message dated 4/21/02 7:50:13 PM Central Daylight Time,

writes:

> Even though those that I work with are not my children

> there is a high level of attatchment that I deal with

> on a daily basis. There are a lot of people who have

> told me not to get attatched, but I don't know how to

> work in this field without caring about those that I

> work with.

>

Devrey,

Yes, be careful or you may bring one home with you like I did. LOL!!! It

definitely makes life interesting. I was very close to some of my clients.

Goodness, I was involved in raising two of them for 8 years of their

childhoods. I still miss them.

Karyn

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Guest guest

uuugh nathan use to finger paint feces too, that seems ages ago, lets see, we

just kept telling him how gross it was and making him hlep clean it up and

shower himself etc, it ws hand over hand for a while but then nathan got the

hang of it and started figuring out its easier to use the toilet then to have to

wash self and everything else, ALSO, he suffered horribly from constipation this

could have been a major factor once we found the right med ( nathanis Miralax)

to releive his constipation and the pain and uncomfortableness that comes with

this he became potty trained and stopped the finger painting too. hope this

helps. shawna.

Re: new member

>

>

> Hey Charlyne,

> Thank you so much for the welcome. I was a bit

> unsure of how the group would take a behavior

> specialist joining up, but my intentions are good.

> I

> enjoy my job but the politics that are invovled

> make

> it hard to make a difference in the field.

> I do think that all of the parents have a bit

> of

> tougher job than I do. I want to let you all know

> that

> I have been reading the e-mails and I think all of

> you

> are doing a wonderful job. Unfortunately most of

> the

> people I work with have come from institutions

> that

> abused and mistreated them for most of their

> lives. My

> heart breaks when I think of all of the things

> that

> have been done to them and I can understand why

> their

> behaviors occur.

> Here is a question for all of you. I need to

> write

> a protocal for one of the people I work with on

> sleeping. He usually stays up late and falls

> asleep on

> the couch. Staff at this home are having a hard

> time

> getting him to his bed and due to the regulations

> we

> follow, we cannot make him go to his bed. Are

> there

> any ideas for helping him feel more comfortable

> sleeping in his own bed?

>

> Thanks,

> Devrey

>

> >

> > Hi Devrey,

> > Welcome to the group. We all need ideas on

> dealing

> > with behaviors! You have a

> > tough job.

> > Charlyne

> > Mom to Zeb 9 DS/OCD ?

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

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Guest guest

Hey a,

Thanks for the info. The company has protocol that

staes that we cannot tell the person that it is gross

or have any negative reaction because that might

inadvertantly reinforce the behavior. So we go through

the process of having to approach and re-approach. I

will definately check out whether or not he has

constipation. This is a great idea and hopefully will

help solve the problem. I can see that it is the

beginning of a long process. I guess you just take it

day by day and hope that staff are running the

programs consistantly. I do appreciate the

information, every little bit helps.

Thanks Again a,

Devrey

--- greenpak <greenpak@...> wrote:

> uuugh nathan use to finger paint feces too, that

> seems ages ago, lets see, we just kept telling him

> how gross it was and making him hlep clean it up and

> shower himself etc, it ws hand over hand for a while

> but then nathan got the hang of it and started

> figuring out its easier to use the toilet then to

> have to wash self and everything else, ALSO, he

> suffered horribly from constipation this could have

> been a major factor once we found the right med (

> nathanis Miralax) to releive his constipation and

> the pain and uncomfortableness that comes with this

> he became potty trained and stopped the finger

> painting too. hope this helps. shawna.

> Re: new member

> >

> >

> > Hey Charlyne,

> > Thank you so much for the welcome. I was a

> bit

> > unsure of how the group would take a behavior

> > specialist joining up, but my intentions are

> good.

> > I

> > enjoy my job but the politics that are

> invovled

> > make

> > it hard to make a difference in the field.

> > I do think that all of the parents have a

> bit

> > of

> > tougher job than I do. I want to let you all

> know

> > that

> > I have been reading the e-mails and I think

> all of

> > you

> > are doing a wonderful job. Unfortunately most

> of

> > the

> > people I work with have come from institutions

> > that

> > abused and mistreated them for most of their

> > lives. My

> > heart breaks when I think of all of the things

> > that

> > have been done to them and I can understand

> why

> > their

> > behaviors occur.

> > Here is a question for all of you. I need

> to

> > write

> > a protocal for one of the people I work with

> on

> > sleeping. He usually stays up late and falls

> > asleep on

> > the couch. Staff at this home are having a

> hard

> > time

> > getting him to his bed and due to the

> regulations

> > we

> > follow, we cannot make him go to his bed. Are

> > there

> > any ideas for helping him feel more

> comfortable

> > sleeping in his own bed?

> >

> > Thanks,

> > Devrey

> >

> > >

> > > Hi Devrey,

> > > Welcome to the group. We all need ideas on

> > dealing

> > > with behaviors! You have a

> > > tough job.

> > > Charlyne

> > > Mom to Zeb 9 DS/OCD ?

> > >

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

> >

> >

> >

> __________________________________________________

> >

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Guest guest

Hi, , I am the grandmother of a low functioning 9 year-old grandson. I

have been in charge of his ABA program for 6 years. Karac is in public

school in a class for special need kids. He has some periodic attacks of

aggression. Seemingly, without provocation he will pull another child's

hair. Recently I observed that these attacks seemed to occur when he was

constipated. It probably sounds crazy, but I started giving him a Granny

apple to eat every day which regulated his bowels, and he hasn't been

aggressive since. Maybe it is just a coincidence. These precious kids are

so unpredictable. I would love to know more about your son. Feel free to

email me directly. God bless, Pat K

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Guest guest

Hi Pat K~~

It's Rose from the old autism lists. Welcome and hope your grandson is doing

well. I'm going to try that tip with my son.

All the best~~

Rose

Re: new member

Hi, , I am the grandmother of a low functioning 9 year-old grandson. I

have been in charge of his ABA program for 6 years. Karac is in public

school in a class for special need kids. He has some periodic attacks of

aggression. Seemingly, without provocation he will pull another child's

hair. Recently I observed that these attacks seemed to occur when he was

constipated. It probably sounds crazy, but I started giving him a Granny

apple to eat every day which regulated his bowels, and he hasn't been

aggressive since. Maybe it is just a coincidence. These precious kids are

so unpredictable. I would love to know more about your son. Feel free to

email me directly. God bless, Pat K

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  • 1 month later...
Guest guest

Hi ,

My name is Jayne, and I am also a new member to this list.

I have a 3 year old girl who is on the spectrum and also has underlying

mitochondrial disease. I also have a 5 year old and two teenage sons.

I look forward to talking with everyone here.

Jayne Nelsen

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Guest guest

- welcome to the list! You news about your daughter is wonderful to

hear. Are you familiar with Dr Kane of BodyBio?

I am Deanna, mom to Bridget 6, ASD (and I believe, recovering) and 3 and

NoT. Bridget has been gfcf for 2 years, we have alternately watched sugars,

preservatives, dyes, and phenols. She has been on pro-biotics and I am

considering S. Boullardi at the moment. She takes a multi vite, calcium

citrate supplement, Coromega (EFA's) and vitamin E. We've also done CLO with

success, CoQ10, and TMG- whcih produced a rash so we stopped. She is also

currently taking enzymes from HNI; pep and zprime. I am very into diet and

supplements that work.

You have a lot to offer everyone on this list and I hope we can offer you

friendship and support as well! Welcome again, Deanna

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Guest guest

Jayne- welcome to the list. It certainly seems as if you have your plate

full! Could you share a little more about your daughters mitochondrial

disease? Does she not synthesize proteins or? Glad to have you with us,

Deanna

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Guest guest

Glad your aboard. Wished you were locally for me! I have 3

biological children two autistic. My oldest girl and my youngest son

autistic.

charlene

-- New member

Hello, it took a while to get an acceptance to this list. I feel

privileged. I am the parent of one of those rare recovered autists. A

girl who is now 18 and who just had a marriage proposal. She has come

a long way from the 5 and a half year old who was brought screeming

and self-abusing into my home 12 years ago diagnosed with severe MR,

low muscle tone, epilepsy and autism with hyperactivity. It has not

been an easy journey. I have higher education degress in Food Science

and Nutrition as well as a MA-TFM ( an alternative to ABA Lovaas

method). I have worked also as a teacher in the UK in a model school

for young adult autists age 16 to 25 for 1 year, an insitution with

adult autists who had lived institutionalized since childhood and who

were finally being transitioned to community living most around age 40

and also as a teacher in a private school for autists ages 9 to 18.

Independantly I have provided nutritional consultation for just over

2000 people (mostly children) with autism. Approximately 10 percent

have gotten results like my adopted daughter (declassification or

symtpom free). So, I am biased to the nutritional aspects for treating

symptoms as opposed to behaviors.

(thanks for letting me join)

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Guest guest

Sure Deanna,

My daughter, Carly (5 yrs old NT) was dx'd at 3 days old with seizure

disorder and apnea. She began having seizures at birth, but they gradually

progressed into grand mal seizures. I had them as a child too. At about 10

months old she had a skin biopsy and was found to have Complex II deficiency

of the electron transport chain. She had low muscle tone and seizures that

were under control with medication, but we really didn't know what to expect

as far as her development. She was right on time with everything (actually

very advanced). Her sister came along eighteen months later and started out

basically the same way. Seizures at 3 days old and was assumed to have the

same dx. However, Madelyn (3 yrs old now) never hit any milestones on time.

I should mention that she was not on the same meds as Carly either. Carly

was on phenobarb, dilantin, tegretol, and caffiene (for apnea). Maddy was

just on phenobarb and then they added tegretol for ongoing tremors. I knew

early on that Maddy was different. She had a weak suck, and seemed to get

angry over strange things at a very young age. She craved water and would

scream bloody murder when I removed her from her warm bath. She was very

colicky and later I discovered that she was having an extreme allergic

reaction to dairy. She was gfcf for a year and began walking and talking

within that year (at 2 yrs old). She's actually 3 and a half now. We have

her back on wheat, but off oats, dairy and some soy products...She is doing

so well right now, but we are still awaiting her organic acids results to

determine if she actually has the same mito disorder as her sister. Docs at

UCLA told my husband and I this year that they didn't believe either one had

mito disorder and the test must have been flawed, so we decided to retest

maddy while she went under to have a benign cyst removed from her back. The

docs were amazed that they found something, and now we are narrowing down

what exactly it is. It's between something called SCAD and Complex II. If

you would like to read more about mito disease, go to www.umdf.org. Carly

also suffered from Kawasaki's disease in August of 2000. I like to spread

awareness to parents about this disease as well since it is the number one

cause of acquired heart disease in children. To learn more about KD, go to

www.kdfoundation.org.

Sorry for the super long post. Feel free to ask me anything! And thanks for

the warm welcome:)

Jayne Nelsen

California

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Guest guest

Hi

Welcome to the group. What great news about your daughter. My name is

Tracey and I have two daughters our oldest Coral will be 12 next month

and our youngest is Skylar, age 91/2, and she was diagnosed with autism

at the age of 3.It is nice to hav you with us. Thanks for sharing your

daughters success with us.

Tracey

sojmed wrote:

> Hello, it took a while to get an acceptance to this list. I feel

> privileged. I am the parent of one of those rare recovered autists. A

> girl who is now 18 and who just had a marriage proposal. She has come

> a long way from the 5 and a half year old who was brought screeming

> and self-abusing into my home 12 years ago diagnosed with severe MR,

> low muscle tone, epilepsy and autism with hyperactivity. It has not

> been an easy journey. I have higher education degress in Food Science

> and Nutrition as well as a MA-TFM ( an alternative to ABA Lovaas

> method). I have worked also as a teacher in the UK in a model school

> for young adult autists age 16 to 25 for 1 year, an insitution with

> adult autists who had lived institutionalized since childhood and who

> were finally being transitioned to community living most around age 40

>

> and also as a teacher in a private school for autists ages 9 to 18.

> Independantly I have provided nutritional consultation for just over

> 2000 people (mostly children) with autism. Approximately 10 percent

> have gotten results like my adopted daughter (declassification or

> symtpom free). So, I am biased to the nutritional aspects for treating

>

> symptoms as opposed to behaviors.

> (thanks for letting me join)

>

>

>

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