Re: Idea to get word out?

[Guest guest]

Alice, I can commiserate with you. I got and continue to get loads

of criticisms from my in-laws. My in-laws scoffed (i.e. laughed) at me

for putting my four-month-old son in a DOC Band. Even after I explained the

medical reasons and gave my in-laws web sites and research info, they refused

to accept my son’s condition. My in-laws even disagreed with a top

pediatric neurosurgeon in the country who told me that my son needed the DOC

band and wouldn’t get any correction (flattening and facial asymmetry) without

it.

Of course, I was and still am livid with

my in-laws about getting the DOC band. However, I don’t think my

in-laws will ever understand why my son needs it. And I’ve decided

that I need to conserve my energy for the weekly adjustments, pt, etc.

Here are some suggestions on how you can

cope with it and not become a victim or let it affect your marriage. Tell

your in-laws how upset they made you and how much you’re trying to do

everything possible for your daughter. Thank them for their concern,

advice and suggestions – saying, “(in-laws), I appreciate your

suggestions, but this is my daughter, not yours.” Ask if this was

their daughter whether they would have done everything possible to correct the

problem. Use your husband’s grandparents as ammunition if needed

and remind them how you were hoping that they either emulated or didn’t

imitate them. Write a letter or e-mail message saying how much they’ve

hurt your feelings when you were looking for their support. Make your

daughter’s condition a taboo subject and talk about anything else but it.

I’ve quickly discovered that it’s

really a matter of setting limits and boundaries with your parents and in-laws once

you have a child. Some parents have a hard time letting go and seeing

their children as adults who do not need or appreciate their unsolicited advice

and suggestions. I think it’s something many new parents struggle

with, though more exacerbated with a baby who has medical needs.

Remember, too, some people refuse to

accept a medical condition like plagio or disability if it’s not visible

to them. It seems that if they can’t see it, then it doesn’t

exist. But we know that not every medical condition or disability is

always visible.

Good luck. Let me know how it goes.

You never know, you may have more success than me!!!

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Alice Bishop

Sent: Tuesday, March 28, 2006

11:46 AM

Plagiocephaly

Subject: Re: Re: Idea to

get word out?

I apologize if this question is obvious or

repetitive, but does anyone know of any articles online that I can send to my inlaws

that explain the medical reasons for treating plagio? I'm

embarrassed to admit that I don't really know what the medical reasons are for

treating plagio--we just wanted our baby's head to not look flat and

dented!

I'll provide a little background here: this is

more of a vent, but my husband and I are receiving a lot of criticism from

my inlaws (his parents) for putting our 10 month old in a DOC

band. When I explained that there were medical reasons and that it wasn't

just cosmetic, they literally scoffed (well laughed, really) at me.

Unfortunately I wasn't armed with a lot of specific facts about what can happen

medically if it's untreated. Our daughter's plagio was classified as

moderate and our ped didn't really think it was that necessary to treat, but he

gave us a referral anyway, we decided to do it and the insurance co covered

it. Unfortunately that still has not quelled the criticism from the

inlaws. Any advice?? Thanks in advance!

Alice

onlyashadow8

<shadowfax8@...> wrote:

I'd certainly be willing to

help out with this, since I believe that

my husband and I contributed to my son's plagio

because we didn't

know any better. The information about

plagio needs to be better

linked to the SIDS information, and awareness

needs to be raised

that this is not a cosmetic problem and that

insurance should cover

its treatment. If we decide to do it, maybe

we should coordinate

the letters so that everyone is communicating

essentially the same

message--maybe that way it'll have a greater

chance of turning into

a column.

-Amy

mother to Noah, 7 months, STARbanded 3/17/06

--- In Plagiocephaly ,

Audrey <isdfc@...>

wrote:

>

> I was reading Dear Abby and thinking about

how many

> others read her column. Several times

people have

> written in asking her to get the word out

about an

> important topic, and she does. What if

several of us

> wrote a brief letter describing Plagiocephaly

(and

> Torticollis) and maybe how doctors &

insurance are

> wrongly thinking of it as " just

cosmetic " ? It might

> grab her attention enough to run one of

them. I'm

> tired of reading about how many doctors don't

have a

> clue about either subject- nor do they seem

to think

> it's important to learn about them!

Every major

> newspaper would run it, which might catch

THEIR

> attention enough to do individual stories.

> http://www.dearabby.com

>

> Audrey

> 7 mo, DOC Band 1/23/2006

>

> __________________________________________________

>