A message from Joyce: I am not sure of the author for the following, if someone does know please tell me so we can credit them for an excellent reference.
How Family and Friends Will Cope
Family, Friends, Co-Workers and all the other people you know are affected by the birth of your baby with Down syndrome. What they have in common is, like most other people you encounter, they do not know how to "properly" react to the birth of your baby. They often don't have the luxury of seeing you or your baby often through the traumatic time to help them "figure out" what would help you. Because most of them have not encountered a similar situation they are left without any real understanding of what you are dealing with.
What does this mean to you? When they find words and actions that are intended to help you or show their support, they often fall far short of their mark. This can happen very often, leaving you wondering if anyone will ever understand your plight enough so that you will be able to turn to them for support once more. Instead of being able to lean on them for support, you are left feeling isolated, misunderstood, and alone. Friends and family members will need your help in coming to understand about your baby and the changes you are dealing with in your life. They will need some direction in how to help you. They may also benefit from guidance in what they say and do.
You may find it very difficult to explain about your new baby to your other children. Afterall, you may still be questioning what happened yourself! The best route is usually honesty - answer their questions as best you can, share what is happening - in simple terms a child may understand, and explain what people are doing to help the baby.
If your baby needs to spend time in the NICU, it can be disconcerting to a child when you are spending lots of time at the hospital. They may feel forgotten and abandoned while you concentrate on your little one who desperately needs your love and attention. This can cause even more guilt for you. It can help to realize this is a temporary situation and you will be able to return to caring for them once again. Remember that this is often the first time a child will see you so distraught and it is scary to them.
It is common for children to fear they caused the baby's condition or your feelings through some thought or action of their own. They may worry or be fearful about how you are acting, and respond in different ways. Their behavior may worsen, in response to their fears and insecurities, with an increase in tantrums, crying or other behavior. They may also regress to less mature behavior, such as bed-wetting or using a bottle or security blanket. They can fear that what is happening with the baby could happen to them. They can fear what will happen to their family and whether or not their parents will return to "normal".
Share how you are feeling with them. Do not act as if things are fine when you are around them. Children are very intelligent and they know differently! Remember to be as honest as you can about the new baby and your feelings. Sometimes saying something as simple as “I am very sad because your new brother is very sick and has to sleep at the hospital until he gets stronger”, may help them to understand and not be so fearful of your actions. Or "I am crying because I am concerned about the baby."
Encourage their questions. They may be scared and intimidated to ask about the baby or about you. Let them know it is okay to talk about everything involving the baby, even a fear of death. Be honest and up front when responding to their questions, but be sure to keep the information on their level. Often simple answers are what a child desires. Because parents often think their children want all the detail, they go into a long explanation when the child merely wants a few answers to a couple questions. Give only the information they request, instead of overwhelming them with a lot of detail.
Arrange for them to visit the baby, if possible. This will dispel a lot of mystery and fear for them. Be sure to prepare them for the visit by explaining rules, and also sharing what the baby looks like. Photos or books are great to prepare a child. Often, they accept the situation readily and question about the logistics of the NICU - the wires, machines and noises instead of the baby. It can help them feel closer to the baby if they can send in photos of themselves for the isolette, and draw cards and pictures for the baby.
Provide extra reassurance and attention. Alternate with your spouse the time you stay at the NICU and the time you stay with your other child. Ask for help from friends, family, or some special babysitters to help take over child care duties and provide "special time" and special outings for the older child and much needed attention.
Grandparents often feel at a loss as to what to say, how to act, how to express what they feel. Many times they feel they should hold back on talking about their fears, feeling there is nothing they can do to help you or the baby, or that sharing their thoughts will scare you . It is important to be able to share your concerns with them and also allow the grandparents to talk about their concerns with you and your spouse, if at all possible. It is also important for grandparents to realize that, oftentimes, you need space and privacy to visit with your baby and there may be times when you may choose not to share all information with them. They should respect your right to refuse visitors on difficult days, if you want to spend time alone with your baby. They should also respect that there may be times you do not feel like talking about the baby and this should not be seen as isolating them.
HOW FAMILY, FRIENDS, CO-WORKERS AND ALL OTHER PEOPLE YOU KNOW COME TO TERMS WITH YOUR SITUATION
People seem to often fall into a few categories after the birth: the Rocks, the Wanna-Be-There's, and the Gingerbread Men. It is helpful to know this, because more than likely you will be surprised to learn what type of supporters your friends and family become for you. But before you read further, understand that you cannot choose what type of supporter each friend or family member will be during this time. Often we assume people will react in an expected manner. Unfortunately, in times like these, we often find our expectations of others doesn't match with real life actions. This can be upsetting.
It helps to understand that everyone reacts differently to the news of Down syndrome, for a wide variety of reasons, many that we are not privy to comprehending at this point. For now, accept that some people will not meet your current needs, while others will far surpass them. You can just not predict accurately how people react to traumatic times. Which leaves you here, to read more about the three basic ways people react....the Rocks, Wanna-Be-There's and Gingerbread Men...
Attempt to do anything and everything. They offer encouragement, support, understanding, and love. These are often your closest friends, although they may very well be a mere acquaintance who has been through a similar struggle and can easily relate to your difficulties and wants to offer support.The Rocks will do anything they can to make your life easier. They seem to know just what to say and do. However, even Rocks slip occasionally with a clueless remark or action. It can be hurtful when this happens, as it makes you feel even your staunchest supporters don't even understand how you feel. This can cause hurt feelings and alienation. The best remedy for a comment they have made that missed the mark? Talk about it. Tell them why it upset you. Explain what exactly you wanted to hear instead. This is not easy, but remember your Rocks would do anything at all to ease your pain, and often take suggestions readily. They welcome the chance to better help you. Rocks will be your saving grace during the first year.
THE WANNA-BE THERES
Are often neighbors, casual close friends and co-workers with whom you work closely, but they can also be close family member or friends. Above all, they have good intentions in their hearts. They want to help, but often don't know how. They may call and try to cheer you, or ask about the baby. They may make offers of help, such as meals or driving assistance. They may even want to see photos of the baby. However, Wanna-Be-There's are not Rocks. They either cannot or do not go the extra mile to understand your plight. They do not offer the right type of compassion to you and often see the baby only in terms of how it makes them feel. They are the kings and queens of clueless remarks. They lack the right amount of empathy and understanding of how to help you.
Who really knows why Wanna-Be-There's are not Rocks. It could be your situation scares them, it interests them like a tabloid story, it hits too close to home. Maybe it doesn't seem as traumatic to them as it is to you, or maybe it seems too critical - with death possible. Or maybe they see their actions and words as helpful to you, and are blind to anything else they could do to help. Perhaps, they are selfish and can only see how the situation affects their life. Maybe they just don't know what to do, and fail to ask. For whatever their reasons, Wanna-Be-There's say they want to be there for you, but aren't. And we often don't know why (which can cause even more resentment and anger).This can be very painful for parents.
Friends, family and co-workers with whom you felt a close bond are disappearing into the woodwork. They may call a few times, and then they are gone. They make second hand inquiries about your baby, but never make the effort to find out first hand. When they do call, they ask all the wrong questions. They say all the wrong things. They may try to minimize your experience, leaving you angry and sad. They get offended by your actions and words (or lack thereof). Most of all, they leave you feeling isolated. You may wonder when the going got tough, where they had all gone.
The only thing that helps to rationalize and understand Wanna-Be-There's is that they just are not capable of helping you at this point in time. Perhaps, they did not learn the skills of compassion and empathy, or your experience is far too removed from their own experiences for them to relate, or they try to make it less scary for themselves, more like something they have dealt with in an effort to understand what you are experiencing. Or they truly may be at a loss as to what they can do to help improve your situation and give you comfort.
We never really know the reasons Wanna-Be-There's fail to become Rocks for us. What we do know is they can create a lot more pain for us. This is a normal occurrence. It is hard to realize that not everyone is able to help us during this time. It is hard to understand that someone you depended on has failed you. We feel that all of our friends should be there for us in times of need. But this is just not always possible.
What can be hardest is to not totally shut them out and disregard them as friends. However, sometimes this becomes the only way you can cope with their lack of understanding and support. Keeping up with them is too draining for you. This too is ok. Unfortunately the price we parents pay for having a baby with Down syndrome can often be the realization that we have lost those we thought we could depend on, even temporarily. While education and information does wonders to build a bridge between those that are falling short of your mark, sometimes the task becomes too much to ask of yourself. You find that for the time being you need to put them aside in lieu of other priorities - namely your baby and your own healing.
Remember that as things improve and you feel up to it, you can try to discuss it with them and try to resolve any hurt feelings. But during this time of stress, you are not REQUIRED in any way to put their needs above yours and your baby's. Maybe at some time in the future you can talk about it with them. There can likely be a rift between the two of you due to their reactions to the birth, and it may continue for some time, until it is worked out. It may heal with some help, or it may not, and you may just choose to move on without their friendship. Sometimes, though once a distance has passed between you and some wounds have healed over, you can build the friendship again.
It takes lots of forgiveness and communication, as well as the ability for friends to "stretch" to understand and empathize with your situation. It can help to know that just as we all cope differently with the birth of our babies, so too do others respond in different ways to us during this time. It can also help to recognize that for whatever reason, Wanna-Be-There's are what they are, we can not change them to Rocks. Expecting their behavior to resemble that of Rocks will only lead to disappointment and anger. It might be best to limit contact with them during your most trying times, as they can make you more frustrated, alienated and just plain mad.
Most times Wanna-Be-There's do honestly share a concern for you and your baby's outcome, and you may choose to keep up contact with them casually. If you learn to expect no more than this, you will ease your disappointment and might even at some point enjoy conversation with them about your baby.
THE GINGERBREAD MEN
Who are they? Casual acquaintances, passing co-workers, neighbors or even family members. Just like the story, they too run, run as fast as they can from you when they hear of your baby's birth. They will not call or contact you. They might ask, always second hand, about your baby. But go no further.
Why? You are just not close enough to them to really elicit much of a response. In other words, they really don't care too much. But with Gingerbread Men, we expected this, and are, therefore, not very disappointed when they run away with out so much as a backward glance. We might very well have responded the same way if the tables were turned.
What do we learn from the three types of reactions? That everyone reacts differently, based on their experiences. We need a Rock or two to make it through this tough time, but other than that, the Wanna-Be-There's and Gingerbread Men aren't too essential and often only cause us hurt. It can be wise to focus on all that the Rocks offer you for the time being and put aside the others until you are ready to deal with those type of people again and you no longer need the kind of support and strength that only Rocks can offer.