Families

[Guest guest]

In a message dated 3/28/01 5:41:34 PM Eastern Standard Time,

jmedlen@... writes:

<< The truth is, if I step back from it, I *do* have his support

and even his respect, but he has yet to reach a point where he can express

it the way I would like. I " m not saying he's wonderful. I " m not saying *I*

am wonderful. I think Rex has ample reason to be very frustrated with me at

times. However, those times would be fewer if only....but " if only " is only

a dream. >>

Joan,

Right again as always But, I have to add something that I have just recently

noticed with my dh. I was changing Seth's diaper and playing with him and my

dh was just sitting, watching, and not helping pick up the mess or holding

Seth's hands out of it. When I got up I asked what was he looking at. He

said he was amazed at how good I was with Seth. I knew right then and there

what the problem was. He doesn't feel he can take care of Seth the way I do

and if he can't, then he shouldn't try. We had quite a talk about it and I

am TRYING to step back and praise my dh when he does things with Seth. Yep,

even the wrong things! LOL I figure if he gets a little more confidence, I

can gently teach him, not my way, but the way that works best for Seth. Of

course, that changes a lot! So I have to learn new approaches all the time

too. LOL Just thinking about how my dh's actions are a reaction to my

actions and not that he doesn't know or care, just that he feels inadequate.

Mind you, my dh will never do all the medical things or school things, but at

least he can do more now and hopefully feel good about it.

Gail

[Guest guest]

In a message dated 3/28/01 5:58:59 PM Eastern Standard Time,

okieleah@... writes:

<< we all seem to have a great working relationship/cyber friendship here,

but

maybe i am wrong...so if my whining is too much, please just dis-enroll me

from the list and i will move on....leah >>

Leah!!!!!!!!!!

NOW HERE THIS!!!!!!!!!!!!!! No leaving, no bad thoughts or feelings. We are

a family here and we all know families gripe, a lot sometimes. LOL You have

a million reasons to gripe and if it bothers anyone, they can delete your

post. We all need this list. We are better parents because of this list.

We hang on to sanity because of this list. We can learn as much from

anyone's griping as we can can a very informative post. You have a lot on

your plate right now, so if you can't gripe on the list, e-mail me and gripe

away. LOL I don't do meds with Seth, but I still read every post not only

because of the tips I may pick up, but because there a may be one sentence in

that post that I can question or help someone with. Actually, I have thought

about what Joan has said for a long time now. I would hate to have Seth's

teacher or therapists reading what I say. My family, well, I say everything

to them that I do to this list. Hang in there Leah, things will be better

after Cam is better. Maybe

Gail

[Guest guest]

I agree with you, Gail! I get a whole lot from this list...and Leah and

are major contributors! LOL They both better stay put! LOL

Terry

[Guest guest]

Once again, Gail, you've hit the nail on the head. My dh does help me

some...but I have come to realize that I have set this scene up. I have

taken responsibility for for so long and am so particular about how

things are done with him that I push dh away and discourage him from helping

by my attitude and behavior! It still irritates me when has a real

mess and I am the one cleaning it up...but, in retrospect, I have done it to

myself! Oh well, another life lesson learned! LOL

Terry

[Guest guest]

In a message dated 3/28/01 6:34:12 PM Eastern Standard Time,

smilinggail@... writes:

<< Leah!!!!!!!!!!

NOW HERE THIS!!!!!!!!!!!!!! No leaving, no bad thoughts or feelings. We are

a family here and we all know families gripe, a lot sometimes. LOL >>

DITTO DITTO DITTO. YES, I am yelling!!!! (Well, not really......I don't

do that well....LOL) Ok guys, I am going to do my typical middle child

thing!!! NO ONE IS LEAVING. K? However, listen up!! Let's really

think about all that's been said. My take on Joan's post was that she was

trying to be honest and fair to all on the list. I believe there's a way

for us to vent and be real and seek support without excluding others.

Joan's message was about including ALL and being conscious of our words; not

at all about censoring our posts or vents. It would break my heart to see

this list deteriorate because of a misunderstanding or misinterpretation.

Joan is in a difficult position; that of moderator. That role compels you

to include everyone on your listserv and to be sensitive to everyone's

status. Whenever she has spoken out, it's been for the good of the list.

This list, as Gail says, really is a family. Families do NOT survive

without communication (well, they do, but as we all know, they dont' do it

well.....LOL) Communication can be a tad painful sometimes, especially for

the communicator. Lord knows, we all know that, since we spend our entire

lives trying to communicate with our kids!!!

All I'm asking is that we take a deep breath, step back and realize that

we're really ALL in the same boat!!! We really ALL care about each other

and our kids. We really ALL are there for each other. Look, anyone of you

can reprimand me, tell me I'm wrong. Tell me I'm off the track. So what.

I ain't going nowhere!!! I love you all and you're stuck with me!!

Donna (OBVIOUSLY used to family stuff.....LOLOLOLOL)

[Guest guest]

In a message dated 3/28/01 7:39:12 PM Eastern Standard Time,

Imaddenmom@... writes:

<< Once again, Gail, you've hit the nail on the head. My dh does help me

some...but I have come to realize that I have set this scene up. I have

taken responsibility for for so long and am so particular about how

things are done with him that I push dh away and discourage him from helping

by my attitude and behavior! It still irritates me when has a real

mess and I am the one cleaning it up...but, in retrospect, I have done it to

myself! Oh well, another life lesson learned! LOL

Terry >>

LOL Terry,

How come everyone can take the words out of my mouth, but me!!!! LOL THAT

is what I was trying to say! LOL

Gail

[Guest guest]

joan,

i am sorry but i have to open my very BIG mouth as usual:-(

if we have no place to vent and say exactly what is on our minds, then many

of us would feel alone totally and lost in a overwhelming amount of life's

situations... my dh is a good guy but he is a not so great involved father.

i am the one who does it all except make the dough, which is a big need in

my life, but i would guarantee there is no way in hell he could do all i do

without splitting his head againt a wall. yet i get no repect for what i do

and he thinks i am nuts because i am so stressed. so if i bitch moan and

groan to the list to much i am sorry.... but right now in my life i can

honestly say this is my lifeline. as for my family reading it i don't care,

because none of them are offering to step up to the plate and lend a hand...

except my mom who i only speak highly of, but she is 15oo miles away.....

we all seem to have a great working relationship/cyber friendship here, but

maybe i am wrong...so if my whining is too much, please just dis-enroll me

from the list and i will move on....leah

>From: Joan <jmedlen@...>

>Reply-

>

>Subject: families

>Date: Wed, 28 Mar 2001 14:27:36 -0800

>

>Over the years I've learned many many things. One is that everyone moves

>along the journey of life at a different rate. Another is that some things

>will generally fall more to the mothers of kids than the fathers. (there's

>an article on news the other day talking about this..dad's were

>spending more time on the weekends if the mother worked outside the home).

>Yet another is to remember that while data from the " general population "

>fits most of America, we're a little different--but the attitudes or

>general trend do still apply.

>

>When I started this list, when I went to KKI with Andy, and throught most

>of Andy's life including today, I've felt like I don't have the support of

>my husband. The truth is, if I step back from it, I *do* have his support

>and even his respect, but he has yet to reach a point where he can express

>it the way I would like. I " m not saying he's wonderful. I " m not saying *I*

>am wonderful. I think Rex has ample reason to be very frustrated with me at

>times. However, those times would be fewer if only....but " if only " is only

>a dream.

>

>Face it: child-rearing responsibility across our country falls more to the

>mothers than the fathers. Mothers tend to grasp the depth of what a

>disability means to a child faster than fathers--mostly because we're

>exposed more. Those fathers who are stay at home dads or who take on this

>responsibility " get it. "

>

>In the last few years I've seen Rex, my husband, grow in ways I thought I'd

>never see. And it's not because of anything *I* did. You can't force your

>spouse to jump on the train the when and how you want. Like you, they need

>to do it in their own way. But Rex's journey has been enlightened by a

>young woman's family who set up a deli in the sherriff's dept cafeteria. He

>sees a grown woman who may be similar to Andy--certainly she shows

>similarity to Andy today. And he's starting to ask some hard

>questions----quesitons I asked YEARS ago. In addition, for the *first*

>time, one of *his* coworkers has asked him for help dealing with a new dx

>of autism in their four-year-old. All of a sudden he has someone to compare

>notes with; to share his stories; to ally fears for; to offer help and

>assistance. It's all new to him, but it has helped him understand better.

>

>Does any of that mean he's up to designing curricular adaptations, going to

>IEP meetings, talking with the doctors about meds, understanding all the

>nuances that are " Andy, " or even stepping in when I'm about to die? No. But

>he's better. AND, he's a good Dad, even when I " m at my wit's end.

>

>I've also learned that I have a responsibility to calmly and rationally

>explain what I need. I've shared with him what my triggers are; when I'm

>falling into a deep depressive time; when I'm overwhelmed by the decisions.

>It doesn't make him jump to the front-lines or even take a day off to stay

>home with a sick boy (after I've been with him for two weeks). That still

>takes complete destruction of my life. But the less I rant and the more I

>try to communicate concisely and unemotionally what I need, the more help

>he is to me when it doesn't interfere with his own work.

>

>It's hard to feel the burden of being the " point man " for this stuff. It's

>hard to feel like you are all alone. But if you are feeling that way, first

>and foremost, try to find some way to renew your own spirit. Sometimes that

>means fighting for 30 mintues to take a walk with some great music or a

>good friend each day. Sometimes that means reading a book. Sometimes that

>means joining a club. But ASK your family to help you with this. Everyone

>needs to renew their own spirit to be a good care giver.

>

>It also helps to consciously remember to make a note of the times when

>those around you DO help; so that when you're wallowing in frustration and

>despair (I do this!!) you can still logically see where improvements have

>been made--by your spouse and your kids! Journalling can help with this.

>

>But it is also important to remember that those we are frustrated with,

>those spouses we wish would do so much more, are people too. They have

>feelings, they have emotions--heavens they KNOW something is wrong, they

>just don't understand it as well as you do. They may *never.* But they can

>improve.

>

>It is perfectlly fine to vent here. I would, however, remind ya'll that

>this is a public forum. That nothing stops yoru spouses from signing up

>and reading the archives **without your ever knowing**. Not that they do.

>But they can. And so can your other kids. What will they think?

>

>I may be this nasty mother/moderator to you guys. you seem to enjoy that

>image of me--not that I do, particularly.. I just know that if my 14 year

>old son signs on to this list to see what other people are saying *I* don't

>want to worry about it. Or if my mother signs on one day--which she may

>well do--that I've acted honorably. That's not to say that I can't rant and

>rave about the inequities of life, for heaven's sake. But I can do it in a

>way that shows my frustration, isolation and hurt without being

>disrespectful.

>

>For the gentlemen on the list, I'm sorry if you've thought this is a

>women-only forum or a free-for-all. Share with us to add a little

>perspective.

>

>yours,

>joan

>someone's " DW. "

_________________________________________________________________

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[Guest guest]

HI

I didn't say don't vent. I just think it's possible to do it without

forgetting that there are 149 other people reading along, that's all.

I didn't say don't tell us you're frustrated. But I did offer some

suggestions of ways I've tried to make it through. I'm just as alone,

tired, and frustrated as the rest of you. But I can work to make life better.

I think it's possible to rail against the world, the dynamics of family,

the stupidity of systems, and the lie better known as FAPE.

I think it's possible to say that *today* I am so mad at my husband that I

could spit without being disrespectful. Chances are on those days he is

equally mad at me.

I never asked anyone to stop complaining. I did, however, feel the need to

stand up for the unspoken family members and explain that it *is* public

ranting. Maybe it's just standing up for the underdog?

I have to say that I respect the idea that ya'll have really strong

marriages. I'm not sure mine would survive if I didn't think twice about

how I said things in public. Rex would be very hurt; I would be equally

hurt if I read things like that about me. Maybe we're oversensitive, but it

would lead to a huge fight and I'd have to concede.

It's just a perspective. Please don't shoot the messenger for taking up the

other side.

Leah, you're going through an *extraordinary* time and considering some

extraordinary measures that hopefully will help the situation (though the

cynic in me has some extreme reservations.....schools never stay consistent).

I read this list every day and wish there was a way to send a respite

worker who " gets it " to folks. We could all use a break--and some are

continually at a breaking point. It's not that I don't hurt for everyone.

And it's not that I don't face those days, too, I do. However, feel a

responsibility to the 150 people signed up for the list. And sometimes, I

just say what I feel.......just like everyone else.

Joan

[Guest guest]

In a message dated 3/28/01 7:54:59 PM Eastern Standard Time,

jmedlen@... writes:

<< I've also learned to say, " Rex, I need help!! " when things are out of

control. This breaks his paralytic reaction and gets him in the thick of

things. He wants to " save me " as much as I want to be saved sometimes.

>>

Joan,

I have just reached this level of understanding and I hope I have the

patience and love to carry through to bring a little more peace into our

home. I am asking for help now BEFORE I lose it!!!! LOL Going to take me a

while before my *insides* catch up with my mind and desires though! LOL My

insides are a tangled mess everytime I see someone do something a different

way than I do it. LOL BUT, I'm going to keep at it and learn to accept what

ever my kids and dh can offer. It's just so hard to accept that I can't do

it all anymore. Oh well, I may learn a lot more on this journey. Oh, and

Joan? Why can't the moderator speak her mind like everyone else? LOL I,

for one, have learned a lot when you do that. We are all on very different

levels with our kids and lives and it's good to stop every now and then and

take inventory of what we have and how we achieved it, and what we want and

how we can achieve it. Reading how other people work through their daily

living problems help us, and in turn, help our kids. That's what we all

want. :-)

Gail

[Guest guest]

In a message dated 3/28/01 8:46:09 PM Eastern Standard Time, duffey48@...

writes:

<< Ok guys, I am going to do my typical middle child

thing!!! NO ONE IS LEAVING. K? >>

LOL Donna!!!! You sound like I feel! LOL I could read a whole digest of

rants and feel bad and try to offer help, but if someone said they were

leaving, THAT would upset me! LOL

Gail

[Guest guest]

At 06:07 PM 3/28/01 EST, Gail wrote:

He

>said he was amazed at how good I was with Seth. I knew right then and there

>what the problem was. He doesn't feel he can take care of Seth the way I do

>and if he can't, then he shouldn't try. We had quite a talk about it and I

>am TRYING to step back and praise my dh when he does things with Seth.

Yep!

The stuff on Fathers of kid with disabilities ( May) reinforces this.

The majority of fathers don't feel competent to do the caring or the

teaching. But they *do* (usually) feel confident in their ability to

" provide. "

Once I stopped looking for a clone of me and started looking (albeit

through a microscpoe at first), I found that he has his own strengths that

are very helpful. It is easier to find them right now when Rex is on Day

shift M-F. For most of Andy's life he's been on graveyard working the

weekends. Whenever you get that odd shift stuff you feel like you're

carrying the entire world on your shoulders because there are so few hours

that cross-over! And, when spouses travel, it's very hard...very hard.

I've also learned to say, " Rex, I need help!! " when things are out of

control. This breaks his paralytic reaction and gets him in the thick of

things. He wants to " save me " as much as I want to be saved sometimes.

I " ve also started to talk to my older son to tell him how he can be

helpful. He's got that paralytic thing too.....but both respond pretty well

with direction. I didn't believe they *wanted* to help for a long time. It

only took a gazillion counseling sessions to help me learn to wade through

it......

j

[Guest guest]

I've been on several DS lists and now the DS/Autism list and over the years

(Trisha is 9 and I started when she was 2) one thing I have noticed is that

labeling and words are being used as gripes almost at times to a point where

sometimes it can be hard to write because of being afraid that you might use

the wrong label or say a word that is offensive to someone else. Sometimes I

wonder if we don't pick those areas to dwell on simply because we can't

change our children's DX's and we feel out of control so we chose something

that maybe we can change. This is just a thought of mine and not directed at

anyone. To be honest, I don't offend easily simply because I look at the

words being used and if Idon't like them, I just skip over them, if someone

is venting and uses words that might offend others I don't think they are

doing so on purpose, at the moment they are typing they are letting their

feelings out and how many of us think one thing but say another? How many

times have we said something that in thinking back we know we should not have

said it? How many times in frustration or anger have we used words and then

hoped that others would understand and forgive us? There may be times when

someone intentionally wants to offend and in that case wouldn't it be better

to just consider the source and move on rather than fuel that person's desire

to be offensive? Anytime you vent you risk someone else hearing about it

whether it be on a list, your neighbor or friends at work. I look at someone

venting as I'd rather them be venting here on the list than on their child.

Maybe it's not something " our " delicate ears like to hear but just maybe

because that person felt comfortable enough to vent that it reduced their

stress and gave them a moment to re-focus so that they could go back to their

family with a heavy weight lifted from them. So, anytime someone feels the

need to vent and are worried about offending anyone, email me, I can take it.

:-)

As for the moderator, she is doing a great job, she is looking out for

everyone's best interest and that is a very hard job to do. Thank you for

doing a super job!

Carol

[Guest guest]

Joan, I just wanted to add a little to your thoughts

on the dads.It has been my experience that men want to

" fix " that which is broken or not quite right and it

is very frustrating when they cannot do so.What may

show as disinterest may simply be anger at themselves

for not making it all better.They seem to look more at

the big picture and less at the tiny details of

life.Many years ago i was carrying one baby down the

steps while pregnant with the second one and i fell

down several steps and instead of being sympathetic my

dh yelled at me!!It hurt my feelings and i of course

yelled back at him until i noticed that he was pale

and trembling and i ask him what was wrong and he said

i just saw the three people i love best in the world

tumbling down the steps and i could not stop it,that

is what is wrong.He was angry at himself for not

stopping the fall from happening!That was an eyeopener

for me into to how men think. Carole

--- Joan <jmedlen@...> wrote:

> Over the years I've learned many many things. One is

> that everyone moves

> along the journey of life at a different rate.

> Another is that some things

> will generally fall more to the mothers of kids than

> the fathers. (there's

> an article on news the other day talking about

> this..dad's were

> spending more time on the weekends if the mother

> worked outside the home).

> Yet another is to remember that while data from the

> " general population "

> fits most of America, we're a little different--but

> the attitudes or

> general trend do still apply.

>

> When I started this list, when I went to KKI with

> Andy, and throught most

> of Andy's life including today, I've felt like I

> don't have the support of

> my husband. The truth is, if I step back from it, I

> *do* have his support

> and even his respect, but he has yet to reach a

> point where he can express

> it the way I would like. I " m not saying he's

> wonderful. I " m not saying *I*

> am wonderful. I think Rex has ample reason to be

> very frustrated with me at

> times. However, those times would be fewer if

> only....but " if only " is only

> a dream.

>

> Face it: child-rearing responsibility across our

> country falls more to the

> mothers than the fathers. Mothers tend to grasp the

> depth of what a

> disability means to a child faster than

> fathers--mostly because we're

> exposed more. Those fathers who are stay at home

> dads or who take on this

> responsibility " get it. "

>

> In the last few years I've seen Rex, my husband,

> grow in ways I thought I'd

> never see. And it's not because of anything *I* did.

> You can't force your

> spouse to jump on the train the when and how you

> want. Like you, they need

> to do it in their own way. But Rex's journey has

> been enlightened by a

> young woman's family who set up a deli in the

> sherriff's dept cafeteria. He

> sees a grown woman who may be similar to

> Andy--certainly she shows

> similarity to Andy today. And he's starting to ask

> some hard

> questions----quesitons I asked YEARS ago. In

> addition, for the *first*

> time, one of *his* coworkers has asked him for help

> dealing with a new dx

> of autism in their four-year-old. All of a sudden he

> has someone to compare

> notes with; to share his stories; to ally fears for;

> to offer help and

> assistance. It's all new to him, but it has helped

> him understand better.

>

> Does any of that mean he's up to designing

> curricular adaptations, going to

> IEP meetings, talking with the doctors about meds,

> understanding all the

> nuances that are " Andy, " or even stepping in when

> I'm about to die? No. But

> he's better. AND, he's a good Dad, even when I " m at

> my wit's end.

>

> I've also learned that I have a responsibility to

> calmly and rationally

> explain what I need. I've shared with him what my

> triggers are; when I'm

> falling into a deep depressive time; when I'm

> overwhelmed by the decisions.

> It doesn't make him jump to the front-lines or even

> take a day off to stay

> home with a sick boy (after I've been with him for

> two weeks). That still

> takes complete destruction of my life. But the less

> I rant and the more I

> try to communicate concisely and unemotionally what

> I need, the more help

> he is to me when it doesn't interfere with his own

> work.

>

> It's hard to feel the burden of being the " point

> man " for this stuff. It's

> hard to feel like you are all alone. But if you are

> feeling that way, first

> and foremost, try to find some way to renew your own

> spirit. Sometimes that

> means fighting for 30 mintues to take a walk with

> some great music or a

> good friend each day. Sometimes that means reading a

> book. Sometimes that

> means joining a club. But ASK your family to help

> you with this. Everyone

> needs to renew their own spirit to be a good care

> giver.

>

> It also helps to consciously remember to make a note

> of the times when

> those around you DO help; so that when you're

> wallowing in frustration and

> despair (I do this!!) you can still logically see

> where improvements have

> been made--by your spouse and your kids! Journalling

> can help with this.

>

> But it is also important to remember that those we

> are frustrated with,

> those spouses we wish would do so much more, are

> people too. They have

> feelings, they have emotions--heavens they KNOW

> something is wrong, they

> just don't understand it as well as you do. They may

> *never.* But they can

> improve.

>

> It is perfectlly fine to vent here. I would,

> however, remind ya'll that

> this is a public forum. That nothing stops yoru

> spouses from signing up

> and reading the archives **without your ever

> knowing**. Not that they do.

> But they can. And so can your other kids. What will

> they think?

>

> I may be this nasty mother/moderator to you guys.

> you seem to enjoy that

> image of me--not that I do, particularly.. I just

> know that if my 14 year

> old son signs on to this list to see what other

> people are saying *I* don't

> want to worry about it. Or if my mother signs on one

> day--which she may

> well do--that I've acted honorably. That's not to

> say that I can't rant and

> rave about the inequities of life, for heaven's

> sake. But I can do it in a

> way that shows my frustration, isolation and hurt

> without being disrespectful.

>

> For the gentlemen on the list, I'm sorry if you've

> thought this is a

> women-only forum or a free-for-all. Share with us to

> add a little perspective.

>

> yours,

> joan

> someone's " DW. "

>

=====

Carole, wife of Rich, mom to and , m-i-l to and ,

grandmom to ,9,with d.s.and a.s.d. and 6 with adhd and possible

a.s.d.and Logan 2 year old chatterbox and Seth,9month old in to everything.Be

wise in the way you act toward outsiders;make the most of every

oppotunity.Colossians4:5

__________________________________________________

[Guest guest]

Sorry you are upset too, Pippa; you have helped our debate to not get too

one-sided so please don't give up on us. One reason the debate has not

been held is because everyone is so busy looking for comfort zones

that they don't challenge one another's ideas and I am glad that you have.

The letter to Ros Mead was only about health visiting because it is only

the health visiting statute that is under threat. The nursing statute will

continue to give as much and as little as protection to school nurses (and

their clients) as it ever did.

And if you feel offended at the thought that school nurses might change

their identity and stop calling themselves nurses: well, that is

how health visitors feel when they are asked to change their identity,

stop calling themselves health visitors and start calling themselves nurses.

The suggestion that we might consider extending the register to 'school

health visitors' was intended to be a genuine attempt at finding a way,

through the statute, of bringing equity to school nurses and health visitors.

It could not happen without a major change in thinking, education, regulation

and probably at least 10 years hard work with good will on all sides.

Even so, I think it is more feasible than changing the entire system of

nurse regulation, which is what would be needed to get a completely new

'higher level' register.

What do you think about the ish idea of combining school nursing

and health visiting into a single qualification, as in the 1970s 'new breed'

worker? Kind regards

P Bagnall wrote:

I

have a number of observations to make on the content of the last few days

of SENATE debate. I joined

the discussion in order to try and get my head round the view that Health

Visiting Registration must be recognised by keeping it in the title of

the new Council. My starting point was to suggest that as HVs and

SNs work so closely together they ought to have similar recognition.

Initially I thought this view would strengthen the argument for the recognition

and continuation of the HV registration (providing school nurses have the

same recognition).

I realise this would require a change in the legislation but hey, if we

believe that is best then it can be achieved. I do not support the

notion that because Health Visiting has had its own regulatory system for

decades it has to remain as such. School nursing has been poorly recognised

and valued over recent decades and I feel strongly that there is no justification

for this remaining so. I

was particularly interested in your comments Jeanette. You are quite

right that school nurses are often employed to work term-time only.

This has been a concern to me for a while now. Generally, health

visitors do not assume responsibility for school nurse caseloads during

school holidays. Young people are very disadvantaged by the rigidity

of school nursing contracts and this has to change (and is slowly).

So I agree with you things have to change. ,

you threw me a bit when you asked why the title of nurse remains in the

description of school nurses. Personally, I feel I was effective

because I was a nurse. From discussions I have had with many school nurses

they too feel that their nursing registration is very valid. I have

the additional feeling that many school nurses would not support the view

that they are separate from the family of nursing (please do disagree school

nurses if I am wrong). So

this appears to be my dilemma. I would like to see education programmes

and standards established so they are complimentary for school nursing

and health visiting. I would like to see their public health contribution

developed in such a way that it builds on their knowledge, experiences

and understanding of nursing. I have real difficulty with the suggestion

that direct entry for health visiting (and potentially school nursing)

would be a good thing. So, I want school nurses and health visitors

to develop their roles side by side but this presents a problem for me

if it means school nurses are no longer recognised as nurses.Are we debating

titles and uni-professional status or protection of the public? As

a nurse I remain firmly committed to considering the profession as a whole

and not in separate pockets. I believe in high standards of patient

care, appropriate and effective CPD and evidence-based practice.

School nurses should be working and developing with their HV colleagues

but this separate identity for health visitors is a problem.I want to contribute

to the future shape and regulation of nursing, health visiting and midwifery

but remain convinced that we are all part of one family-nursing.

Am I alone?Finally, the visit to Quarry House and the letter to Ros Mead

was purely focussed on health visiting. I will gladly contribute

in any way suitable on behalf of school nursing. It would be so useful

if we could talk about these issues in a more synchronised way.I think

it is about time I emigrated to some unknown corner of the world!Pippa

[Guest guest]

Pippa do not give up - or any of the other school nurses - we

desperately need the debate and the more school nurses indicate their

views and opinions the better clarity will come from it I am sure. We

need more school nurses to say what they think and how they feel about

their profession and it is only they that can help the direction.

In message <3B32614D.49091B4E@...>, Cowley

<sarah@...> writes

> Sorry you are upset too, Pippa; you have helped our debate to not

> get too one-sided so please don't give up on us. One reason the

> debate has not been held is because everyone is so busy looking 

> for comfort zones that they don't challenge one another's ideas and

> I am glad that you have.  The letter to Ros Mead was only about

> health visiting because it is only the health visiting statute that

> is under threat. The nursing statute will continue to give as much

> and as little as protection to school nurses (and their clients) as

> it ever did.

>

> And if you feel offended at the thought that school nurses might

> change their identity and stop calling themselves nurses:  well,

> that is how health visitors feel when they are asked to change

> their identity, stop calling themselves health visitors and start

> calling themselves nurses.

>

> The suggestion that we might consider extending the register to

> 'school health visitors' was intended to be a genuine attempt at

> finding a way, through the statute, of bringing equity to school

> nurses and health visitors.  It could not happen without a major

> change in thinking, education, regulation and probably at least 10

> years hard work with good will on all sides.  Even so, I think it

> is more feasible than changing the entire system of nurse

> regulation, which is what would be needed to get a completely new

> 'higher level' register.

>

> What do you think about the ish idea of combining school

> nursing and health visiting into a single qualification, as in the

> 1970s 'new breed' worker?  Kind regards

>

>

>

> P Bagnall wrote:

>

>> I have a number of observations to make on the content of the

>> last few days of SENATE debate. I joined the discussion in order

>> to try and get my head round the view that Health Visiting

>> Registration must be recognised by keeping it in the title of

>> the new Council.  My starting point was to suggest that as HVs

>> and SNs work so closely together they ought to have similar

>> recognition.  Initially I thought this view would strengthen the

>> argument for the recognition and continuation of the HV

>> registration (providing school nurses have the same

>> recognition).  I realise this would require a change in the

>> legislation but hey, if we believe that is best then it can be

>> achieved.  I do not support the notion that because Health

>> Visiting has had its own regulatory system for decades it has to

>> remain as such. School nursing has been poorly recognised and

>> valued over recent decades and I feel strongly that there is no

>> justification for this remaining so. I was particularly

>> interested in your comments Jeanette.  You are quite right that

>> school nurses are often employed to work term-time only.  This

>> has been a concern to me for a while now.  Generally, health

>> visitors do not assume responsibility for school nurse caseloads

>> during school holidays.  Young people are very disadvantaged by

>> the rigidity of school nursing contracts and this has to change

>> (and is slowly).  So I agree with you things have to change.

>> , you threw me a bit when you asked why the title of nurse

>> remains in the description of school nurses.  Personally, I feel

>> I was effective because I was a nurse. From discussions I have

>> had with many school nurses they too feel that their nursing

>> registration is very valid.  I have the additional feeling that

>> many school nurses would not support the view that they are

>> separate from the family of nursing (please do disagree school

>> nurses if I am wrong). So this appears to be my dilemma.  I

>> would like to see education programmes and standards established

>> so they are complimentary for school nursing and health

>> visiting.  I would like to see their public health contribution

>> developed in such a way that it builds on their knowledge,

>> experiences and understanding of nursing.  I have real

>> difficulty with the suggestion that direct entry for health

>> visiting (and potentially school nursing) would be a good

>> thing.  So, I want school nurses and health visitors to develop

>> their roles side by side but this presents a problem for me if

>> it means school nurses are no longer recognised as nurses.Are we

>> debating titles and uni-professional status or protection of the

>> public?  As a nurse I remain firmly committed to considering the

>> profession as a whole and not in separate pockets.  I believe in

>> high standards of patient care, appropriate and effective CPD

>> and evidence-based practice.  School nurses should be working

>> and developing with their HV colleagues but this separate

>> identity for health visitors is a problem.I want to contribute

>> to the future shape and regulation of nursing, health visiting

>> and midwifery but remain convinced that we are all part of one

>> family-nursing.  Am I alone?Finally, the visit to Quarry House

>> and the letter to Ros Mead was purely focussed on health

>> visiting.  I will gladly contribute in any way suitable on

>> behalf of school nursing.  It would be so useful if we could

>> talk about these issues in a more synchronised way.I think it is

>> about time I emigrated to some unknown corner of the world!Pippa

>>  

>

>

>>

[Guest guest]

Pippa

I'd like to join the chorus of those saying don't give up! Two points you

raise are particularly important to me, and the very fact that you raise

them surely challenges me and others to review our own positions. Tha can

only be to the good. My comments are not really directed at you

personally, but are intended to add to the wider discussion.

Firstly, you perceive health visiting as part of one family - the family

of nursing. I do have a problem with that. Unless I have misunderstood the

relevant legislative history, health visiting is and has been a separate

profession. In 1982 Jane 's analysis placed health visiting

squarely between social work and nursing (An Evaluation of Health

Visiting, pub. CETHV). I would add public health as a third significant

dimension related to health visiting.

Although many health visitors may feel that their nursing background is

hugely important to what they do, some of this may be partly a consequence

of the erosion of what is health visiting by the dominant influence of

nursing since the passing of the Nurses, Midwives and Health Visitors Act.

For example, it bothers me that there has been such quiet acquiescence

regarding nurse prescribing for HVs. Future modules of preparation

envisaged for nurse prescribing seem a clear example of the curative

nursing influence where there would be more justification for emphasis on

skills in supporting families, on community development skills, and/or on

developing the public health role. Qualified as a nurse, a midwife, and a

health visitor, I have to say that I perceive the activity of health

visiting as qualitatively more different from nursing than midwifery is!

(Even though I worked as a community midwife in the days when they worked

solely in the community).

This leads to the second point I picked up - whether the debate is about

protecting the public - or a uni-professional status and title. I consider

there is a third aspect, which is what the debate is about for me, and

that is the protection of an activity, which has been called health

visiting, which I'm committed to as being needed and of value to the

public. That activity has been compromised in many ways in the past, not

least by association with nursing. Unless the unique, long-term

preventative and health promotion work with well individuals, families and

communities is ring-fenced as the core of an occupational role it will

always remain in danger, as a lower priority than intervention and

treatment. I'm not interested in preserving the tribe of health visitors -

but I'm very afraid that the concept and activity of health visiting could

be lost. The need for it would remain and in maybe 20 years it would start

to be reinvented, but only because in the meantime sufficient members of

the public had suffered from the loss. So yes - in that sense, it is part

of the case for the need to protect the public.

In summary, I see the health visiting issue as being about fighting to

preserve something which has existed for many years, is of enduring worth

and which is in danger of being lost, not about seeking new status or

separateness. Indeed, by its very nature health visiting can only be

delivered effectively in alliance with other agencies. Its current

location in the NHS and in primary care aids some of those alliances, but

impedes very many more.

Keep challenging!

Best wishes

Betty

[Guest guest]

Dear Betty,

I do so agree but so far have been unable to convince either community

paediatricians and public health dept (who lead strategy for childrens

services) that health visiting has this unique overlap with social services,

health promotiona and health (not to mention family unit of police, youth

offending team, education, voluntary agencies, charities and many others)

despite sending a carefully researched response citing over 40 examples of

research positively backing health visiting in its many aspects. They are

fixated on a pathogenic framework and only take note of clinical research of a

quantitative nature.

My next effort will be through my position on the exec. committee of the PCT -

but I do not feel too optomistic.

Regards,

Ruth

Betty wrote:

> Pippa

>

> I'd like to join the chorus of those saying don't give up! Two points you

> raise are particularly important to me, and the very fact that you raise

> them surely challenges me and others to review our own positions. Tha can

> only be to the good. My comments are not really directed at you

> personally, but are intended to add to the wider discussion.

>

> Firstly, you perceive health visiting as part of one family - the family

> of nursing. I do have a problem with that. Unless I have misunderstood the

> relevant legislative history, health visiting is and has been a separate

> profession. In 1982 Jane 's analysis placed health visiting

> squarely between social work and nursing (An Evaluation of Health

> Visiting, pub. CETHV). I would add public health as a third significant

> dimension related to health visiting.

>

> Although many health visitors may feel that their nursing background is

> hugely important to what they do, some of this may be partly a consequence

> of the erosion of what is health visiting by the dominant influence of

> nursing since the passing of the Nurses, Midwives and Health Visitors Act.

> For example, it bothers me that there has been such quiet acquiescence

> regarding nurse prescribing for HVs. Future modules of preparation

> envisaged for nurse prescribing seem a clear example of the curative

> nursing influence where there would be more justification for emphasis on

> skills in supporting families, on community development skills, and/or on

> developing the public health role. Qualified as a nurse, a midwife, and a

> health visitor, I have to say that I perceive the activity of health

> visiting as qualitatively more different from nursing than midwifery is!

> (Even though I worked as a community midwife in the days when they worked

> solely in the community).

>

> This leads to the second point I picked up - whether the debate is about

> protecting the public - or a uni-professional status and title. I consider

> there is a third aspect, which is what the debate is about for me, and

> that is the protection of an activity, which has been called health

> visiting, which I'm committed to as being needed and of value to the

> public. That activity has been compromised in many ways in the past, not

> least by association with nursing. Unless the unique, long-term

> preventative and health promotion work with well individuals, families and

> communities is ring-fenced as the core of an occupational role it will

> always remain in danger, as a lower priority than intervention and

> treatment. I'm not interested in preserving the tribe of health visitors -

> but I'm very afraid that the concept and activity of health visiting could

> be lost. The need for it would remain and in maybe 20 years it would start

> to be reinvented, but only because in the meantime sufficient members of

> the public had suffered from the loss. So yes - in that sense, it is part

> of the case for the need to protect the public.

>

> In summary, I see the health visiting issue as being about fighting to

> preserve something which has existed for many years, is of enduring worth

> and which is in danger of being lost, not about seeking new status or

> separateness. Indeed, by its very nature health visiting can only be

> delivered effectively in alliance with other agencies. Its current

> location in the NHS and in primary care aids some of those alliances, but

> impedes very many more.

>

> Keep challenging!

>

> Best wishes

>

> Betty

>

>

[Guest guest]

How did your families react to the news about your kids having

plagio? My parents are saying that I am an idiot for even thinking

about the helmet, " think what it is going to do to the child!!! " But

it's also because they haven't seen her yet. When they see my

daughter, they will tell me,that I am an idiot anyway for not

noticing this sooner and not applying common sence opposed to " back

to sleep program " . This does not help and freezes me from making any

kind of decidions. :-( How is it in your families? Do you get any

support?

Hanna

[Guest guest]

I wonder if this could be dealt with if we had more information from

the get go... If instead of letting our kids sleeping on the backs of

their heads we would turm their heads to the right or to the left

each time?.. Or do you think they would sleep on the back of their

heads anyway because this is what they like? I feel so bad, because I

feel it is my fault and if I had more knowledge and was more

atentive, my daughter would not have this problem....

Hanna

> > How did your families react to the news about your kids having

> > plagio? My parents are saying that I am an idiot for even

thinking

> > about the helmet, " think what it is going to do to the child!!! "

> But

> > it's also because they haven't seen her yet. When they see my

> > daughter, they will tell me,that I am an idiot anyway for not

> > noticing this sooner and not applying common sence opposed

to " back

> > to sleep program " . This does not help and freezes me from making

> any

> > kind of decidions. :-( How is it in your families? Do you get any

> > support?

> > Hanna

[Guest guest]

Debbie said:You're the mommy and you know what's best for your baby!!

I second that!

How did your families react to the news

about your kids having

> plagio? My parents are saying that I am an idiot for even thinking

> about the helmet, " think what it is going to do to the child!!! "

But

> it's also because they haven't seen her yet. When they see my

> daughter, they will tell me,that I am an idiot anyway for not

> noticing this sooner and not applying common sence opposed to " back

> to sleep program " . This does not help and freezes me from making

any

> kind of decidions. :-( How is it in your families? Do you get any

> support?

> Hanna

>

>

>

[Guest guest]

My family was extremely supportive. My mom was actually worried

about 's head before I was and urged me to get a second opinion

when was 2 months and the doc said she would " round out " . I

thought my brother would be negative because he doesn't do very well

with change, but he ended up being one of the MOST supportive

people. He and his wife have pictures of in her helmet

proudly displayed in their home for all their freinds to see (which

I'm really happy about because a lot of their friends are becoming

new parents).

If you have family that is not supportive maybe you could share with

them how important it is that you band and the negative effects of

not banding.

& Emiy (16 months, STARband Grad)

> How did your families react to the news about your kids having

> plagio? My parents are saying that I am an idiot for even thinking

> about the helmet, " think what it is going to do to the child!!! "

But

> it's also because they haven't seen her yet. When they see my

> daughter, they will tell me,that I am an idiot anyway for not

> noticing this sooner and not applying common sence opposed

to " back

> to sleep program " . This does not help and freezes me from making

any

> kind of decidions. :-( How is it in your families? Do you get any

> support?

> Hanna

[Guest guest]

In a message dated 8/12/2003 9:23:06 PM Eastern Daylight Time, ejw_p@... writes:

When they see my

daughter, they will tell me,that I am an idiot anyway for not

noticing this sooner and not applying common sence opposed to "back

to sleep program". This does not help and freezes me from making any

kind of decidions.

Hanna-

You probably have already researched this and read more information about plagio than any of your family members, so you are the best, and most educated person to come to any kind of conclusion on treatment. My family thought I was being overdramatic, that there was nothing wrong with my son's headshape, and said they couldn't see the misalignment and facial asymmetry I kept pointing out- and when I did point it out, they quickly pacified me into thinking it was all an illusion and nobody was perfect. My ped as well, she said that my son's ear misalignment (which was severe) was an optical illusion due to the tort. I was lucky enough to find this group and learn that I was not alone in what I was seeing, and how I was being treated. No one but mothers and fathers like us that have tried repositioning off that flat spot realize what a frustrating and often times impossible job it is. Some have had success with repo, but you have to be able to assess your situation, and know when to say its not working, all within good timing for band/helmet therapy to work for your child. I pushed my ped to write that rx, and we are so thankful we did. All of the negative vibes were soon turned into support, my parents starting being honest with me and soon became my biggest support system. My ped is forever commenting that the band was the best decision for us, and how round and great his head looks. So go with your gut, you know your child best, you know what has or has not been shaping up, and only you will have to answer to your child down the road. It sounds like no matter what your decision, you are facing opposition, but what matters is that you go with your own instincts and decide for yourself what is in the best interest of your child- again keep in mind that you have been doing more homework on this than any of them, and know way more than they speculate. Good luck and please keep us posted!

'mom

[Guest guest]

Hanna, I rec'd wonderful support from my family. My FIL was the only

one that was even half way " freaked " out by her band. He wanted to

take snapshots of her one day and wanted me to take her band off and

I refused. Told him he could take pictures of her in her band or not

at all. Then, a very distant cousin of my husbands, kept telling me

that she didn't need a band, why are you doing this......I just kept

telling her that her head needed it. Then, the day I rec'd

Before & After pictures in the mail, I showed her, Katy bar the

door!!! All of a sudden, I had done the right thing and she thought

I was awesome for being on top of things with her. lol She is

always telling me now of babies and kids that need/needed helmets.

hehe You will find that your family will be the most critical,

because they think they can be without stepping on toes. I would

suggest telling them, this is my child and I will do whatever I can

to help molding of his/her skull. I would also like to add that my

Mom took to most of her adjustments for me so that we didn't

have to miss a lot of work. Very supportative my mother was. Hat's

off to Granny!! hehe

Dustie

> How did your families react to the news about your kids having

> plagio? My parents are saying that I am an idiot for even thinking

> about the helmet, " think what it is going to do to the child!!! "

But

> it's also because they haven't seen her yet. When they see my

> daughter, they will tell me,that I am an idiot anyway for not

> noticing this sooner and not applying common sence opposed to " back

> to sleep program " . This does not help and freezes me from making

any

> kind of decidions. :-( How is it in your families? Do you get any

> support?

> Hanna

[Guest guest]

In a message dated 8/13/2003 1:13:06 PM Eastern Daylight Time, ejw_p@... writes:

Except for now all I keep

hearing is not very supportive and how my Mom would never make

mistakes while raising us

Hanna-

I'm sure you can think of something that she could have done better You might also want to ask, did your mom stomach sleep her children? My parents and that entire generation let the kids sleep on their stomach prior to the correlation between SIDS and stomach sleeping, so chances are- your mom just got lucky! If she were to add back sleeping to the time you spent in bouncers, carseats, swings, she just might have had a whole different world herself to deal with. Don't you let them brow beat you, your here online because your a good parent looking for answers to help your child, many parents don't even make that step. Keep your chin up, be proud of yourself for seeking help/treatment in ample time, and just sit back and watch them eat their words when this is all said and done )

'mom

[Guest guest]

,

I suspect the same will happen to me. Except for now all I keep

hearing is not very supportive and how my Mom would never make

mistakes while raising us.

Hanna