|
Helpful Words for New Parents
Taken and adapted for EB from the Down
Syndrome for
relatives page website
I have received many e-mails from relatives and
friends of children with EB trying to get more information about the new
child in their family. I cannot stress enough how important it is for
family to support the new parents at this time. This is a frightening
time for the new parents and they often wonder how their family will
treat the new baby. Showing how much you love them and their new baby
will help to alleviate these fears; "gently" pick up the baby, fuss over
the baby, play with the baby. Sometimes you may not know the right thing
to say or what you say, is in fact, the wrong thing. I would like to
give some suggestions about what not to say and what to say. The
following suggestions are based upon the input of many parents of
children with EB and Down Syndrome.
Things NOT to say
These are the things that
parents have said really upset or angered them:
-
"I'm sorry", "Poor___" (either you or the baby)
or any form of pity.
Pity is not
what parents want or need. What they need is love and acceptance of
their baby.
-
"God gives special parents special children" or
any variation.
The new parents probably don't feel
very special right now. Also, some parents may be a little mad at God.
Trying to make them feel better with words like these might be
appreciated by some parents and not by others. It is best to avoid
this.
-
"Do they know how serious it is?" or any
variation.
This is a demonstration of a lack of
knowledge about Epidermolysis Bullosa. Some parents may be angry and
want to reply with, "How serious is it? Well, every part of his body
can and will blister... he can die at anytime... is that serious
enough?"
-
"You are handling this better than I could."
This is an invitation for the new parents to say
something like, "No, you would be wonderful." Suddenly, the
conversation has switched to you instead of the parents and their new
baby. Plus, you don't really know how the new parents are handling it,
do you?
Things TO say
These are the things
parents have found comforting or made them feel good:
-
"Congratulations."
They just
had a baby! What better response to show that you love them and their
baby than to say congratulations. It made us feel like 'normal'
parents when someone said that to us. If the hospital allows it, a
bottle of champagne could be greatly appreciated.
-
"He/She looks just like you."
Or similar comments you would have said to the parents if the
baby would have been born healthy. This tells the parent that you can
see the child behind the disability.
-
Friends and family who actually 'did' something
like read about the disability (or find information on the web!)
This really means something to the
new parents. It shows love and concern for the baby. The day after we
told a friend of Nick (Christine) about Nicky having EB, she called
and told us about everything she had found on the Web dealing with EB.
Silvia's cousin Mary searched the medical journals for information on
EB and later called us with everything she found. They showed us that
they really cared.
-
Offer to baby-sit.
It is a
fear of the new parents that their family will not accept the new
baby. Especially with babies with EB, most people are afraid to hurt
the child. By saying something like, "Well, when are you going to let
me baby-sit?" you are showing the new parents that you want to be part
of the baby's life. This will be a great relief to them. Of course,
due to the fragile nature of and EB child, you will probably never
baby-sit this child, and it's important that you do not get offended
by this. But knowing that you care enough to offer means a
lot.
-
"He/She will do fine."
The new parents are probably pretty worried. They might not
know much about EB, and they may be concerned about possible medical
problems. Having a positive attitude will rub off on them. They don't
need pessimism or negativity from their loved ones.
-
"We'll all learn from him/her."
This is another good way to show that you intend on being part
of their lives. After all, how can you learn from their new baby if
you are ashamed of him/her? Their new child will be an opportunity to
learn about love, acceptance, and respect for the disabled.
-
"We will always be here to help."
Another very good way to show that you are going to be there.
Let the new parents know that you intend on being part of their lives.
But don't just say it without doing nothing afterwards, actually plan
how you're going to be there for them, otherwise they are just
meaningless words, and the new parent will resent
it.
Disability Etiquette: Some Do's
and Don'ts-from the Parents' Perspective
Tips to
Make the Office Visit Better for Everyone
The following suggestions have been compiled from
parents of children with special health care needs across the
country:
-
DO respond positively to our children in your
initial interaction. Tell us they are cute, sweet, cool, that they are
wearing a neat hat. Let us know that you value them even if you can't
cure them.
-
DO ask questions of our children, even if the
child can't speak. Show your recognition and respect. Don't worry; his
parent will find a way to facilitate the communication.
-
DO look at our children when you are talking to
them. Please make every effort to establish a personal connection.
-
DO get down to our child's level. For example, if
our child is in a wheelchair, kneeling or sitting down will help make
him feel more comfortable.
-
DO realize that sometimes parents are very tired
of telling their story over and over. Even though you may have your
own personal medical interest, don't ask if you don't need to know. Be
understanding if the parent shows frustration at telling the child's
story yet again.
-
DO notice and be attentive to brothers and
sisters. They have grown up in a situation where their sibling, by
necessity, has received lots of extra attention. They don't understand
why they shouldn't be just as entitled to a sticker or balloon.
-
DO be aware that our grief and sadness may recur
at any time and often does at transitional times-beginning pre-school
or high school, the day of the senior prom, an anniversary of another
loss. It's never resolved entirely.
-
DON'T ask questions or raise issues that could be
painful for us (and our child) in front of our child. If you need to
understand more about the birth history, for example, find a way to
talk separately with the parent. You should never assume our child
doesn't understand or doesn't have feelings.
-
DON'T refer to our children by their diagnoses
(e.g., "MR kid," "Downs" kid); it's a good habit to develop no matter
with whom you're talking.
-
DON'T judge parents; we are doing the best we can
often under difficult circumstances. If we are impatient or rude, it
may be that we are under particular stress.
-
DON'T be surprised if we need instructions,
procedures or explanations repeated several times, especially if the
information is complicated, upsetting or unexpected. We are often
thinking about a million other things and we are trying to synthesize
what you have to tell us at the same time.
Silva, TJ, Sofis LA, Palfrey JS. 2000. Practicing
Comprehensive Care: A Physician's Operations Manual for Implementing a
Medical Home for Children with Special Health Care Needs. Boston, MA:
Institute for Community Inclusion/UAP,
Boston
|
