Taken and adapted for EB from the Down Syndrome for relatives page website
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. 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:
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.
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., “EB 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