Re: Chronic sorrow is a potential barrier to parental understanding of their child's care and diagnosis.

[Guest guest]

jypsy wrote:

>Although this is not specific to autism (it is specific to parents of

>children born with Neural Tube defects) it seems to me it illustrates the

>issues facing many parents of autistics.

>http://www.medscape.com/viewarticle/474596?src=mp

>

> From Journal of Neuroscience Nursing Chronic Sorrow and Depression in

>Parents of Children with Neural Tube Defects Posted 05/28/2004

>Hobdell

I'll take a look at it tomorrow (too much for me tonight).

Not to diminish the seriousness of the issue, but....

Was I the only one who, after reading the article's title,

started singing: " I am a mom of chronic sorrow " ?

Jane

[Guest guest]

I wrote:

>Was I the only one who, after reading the article's title,

>started singing: " I am a mom of chronic sorrow " ?

and responded:

>Knowledge about chronic sorrow is what keeps me from going under at

>times. I know the sun will shine again, I know that it is a special

>extra we get as parents of a child with autism or whatever. Sometimes I

>wonder if there isn't sorrow for one self. Nobody seems to investigate

>that. Maybe because it is called being disappointed wiht yourself and

>crystalizes itself in depression

I was talking to someone about that the other day, the fact

that most peopole as teenagers have not yet achieved the

" knowledge about chronic sorrow " to undderstand that " the

sun will shine again. " Unfortunately, without that

understanding, the burden can seem so unendurable that

suicide looks like a good alternative.

I did want to note that my previous post (quoted above)

is humorous only for those familiar with the formerly

well-known folk song (or folk-type song, I'm not sure)

" Man of Constand Sorrow. " It begins: " I am a man of

constant sorrow, I've seen trouble all my days.... " (or,

" I am a maid of constant sorrow, " if a female is

singing it).

I was playing with words (inevitable for those with " my

kind of autism " ), not in any way belittling the sorrows

and difficulties faced by parents.

Jane

[Guest guest]

I think you make a perceptive comment about the idea of

disappointment in yourself. I have worked closely with families

with profoundly disabled children and most of the parents talked

about cyclic grieving when peers achieved milestones that their own

children would never achieve. they all expressed clearly that the

grief was for their own changes in expectations and for many, it was

to an extent, about guilt even when intellectually, they knew that

they had no reason to feel guilty. i think society pressures

parents to feel that they have to produce offspring that will

conform and contribute economically. similarly it " punishes "

parents whose offspring require more resources or who may not

contribute economicaly to society. to me, this is a very limitted

view of " contribution to society " .

> >Although this is not specific to autism (it is specific to

parents of

> >children born with Neural Tube defects) it seems to me it

illustrates

> the

> >issues facing many parents of autistics.

> >http://www.medscape.com/viewarticle/474596?src=mp

> >

> > From Journal of Neuroscience Nursing Chronic Sorrow and

Depression in

> >Parents of Children with Neural Tube Defects Posted 05/28/2004

>

> >Hobdell

>

> I'll take a look at it tomorrow (too much for me tonight).

> Not to diminish the seriousness of the issue, but....

>

> Was I the only one who, after reading the article's title,

> started singing: " I am a mom of chronic sorrow " ?

>

> Jane

>

>

>

>

>

[Guest guest]

gprobs wrote:

>...i think society pressures

>parents to feel that they have to produce offspring that will

>conform and contribute economically. similarly it " punishes "

>parents whose offspring require more resources or who may not

>contribute economicaly to society. to me, this is a very limitted

>view of " contribution to society " .

Agreed. And I think parents also must grieve at times

when they think of the problems their " non-standard "

children are going to encounter throughout life,

through no fault of their own.

Jane

[Guest guest]

I wrote:

>>Agreed. And I think parents also must grieve at times

>>when they think of the problems their " non-standard "

>>children are going to encounter throughout life,

>>through no fault of their own.

and jypsy responded:

>so what makes my husband and I immune from this grief and chronic sorrow?

If you are talking specifically about being immune to

feeling grief about the unhappiness your children are

likely to suffer, I don't know. My mother was a lot

less " identified " (hung-up on being connected to) her

children than most mothers I have heard about. But

even she felt some anxiety about what I might be in

for when I " came out " as a lesbian. Not because she

was disappointed about me, but because her whole

experience up to that point in her life was that gay

and lesbian people are targets for hatred. She did not

like to think of my being a target for hatred, so the

idea that I was going to be a target for hatred made

her sad. She may have grieved a bit, I don't know,

because she was too polite to show it.

Before long, she got to know a lot of lesbians and

gay men who were happy and self-confident and open

and not having their lives dominated by the negative

effects of homophobia. And then she felt relief (as

well as joy in the friendhips she formed with her

lesbian and gay friends).

Possibly you and your husband have had enough

experience living apart from " mainstream " society

that you never worried about the effects of that

society on your children, never felt sad about the

pain your children might encounter if/when they

chose to particpate in a society that was likely

to reject (and discriminate against) them. ?

Jane