We received it a few days ago and John and I have been reading through the booklet we requested from the War Amps CHAMP program. Its called "Parenting the Amputee Child" (Janelle, I have a copy for you by the way, I forgot to give it to you today!)
For those who don't know, the CHAMP program serves Canadian amputee children up to age 18 regardless of their type of amputation (congential, accidental or medical). CHAMP also provides amazing support for families, financial coverage of artificial limbs and recreational devices, helpful info and resources about amputation and prosthetics, as well as seminars and peer support.
The following information is just one example of all the resources they supply free of charge. The following is summarized in my own words from "Parenting the Amputee Child", based on the work of the CHAMP program.
The first part talks about the most common feelings that parents of amputee children experience. Obviously, everyone's feelings are very different and no two experiences are exactly the same. Many of the feelings are connected to each other.
Acknowledging your feelings is the only way to work through them. Then parents are able to focus on looking ahead and meeting their child's needs with a realistic, positive approach.
Anger is often over the simple fact that your child has an amputation and what could have caused it. You may feel that it is extremely unfair and even be "angry at the world". Anger can present itself in many ways, including arguing and resentment.
Blame can be felt internally and expressed outwardly as well. Mother's often blame themselves, thinking they could have done something to prevent this from happening to their child. Parents may feel that the amputation was their fault.
Some parents blame environmental factors such as acid rain, fertilizers, pesticides, medications, radiation, pollution or even computers. But it is only in VERY rare instances (like the Thalidomide crisis in the 50s & 60s) that congenital amputation is directly linked to environmental causes.
DOUBT & DISCOMFORT
As a parent, this whole area of "amputation" is probably completely new to you. You will meet a lot of different professionals (doctors, orthopaedic surgeon, prosthetist, occupational or physical therapist...) The terminology may be unfamiliar and overwhelming. At first parents might doubt their abilities to make the best decisions for their child, with so much advice coming at them from different directions.
AGONIZING (OVER "WHAT IF...?")
Parents may wonder if the amputation could have been prevented and subject themselves to countless "What if..." questions. This is like unnecessary torture to parents. And all those questions do not change a thing.
Grief over the loss of a body part has been compared to the grief of losing a loved one. It is very common to feel grief at the time of finding out about your child's amputation or at the time of an accident resulting in amputation.
There are said to be several stages of grief: Denial, Anger, Bargaining, Depression and Acceptance.
Each person's grief is different and not everyone goes through the same stages or to the same degree.
GUILT & SHAME
This happens when parents blame themselves for their child's amputation. Parents may even feel guilt and shame because of wondering what others will think about their child and if others will judge their parents for assuming they were the ones to cause it.
You may feel sorry for yourself and some people will probably feel sorry for you. You and others may express pity towards the child, which gives the impression that there is something wrong with the child or something wrong with being an amputee. This can leave your child feeling powerless with a negative outlook on life. Amputees often say the comments they dislike the most are those that imply they should be felt sorry for or looked after.
Parents may be shocked and not know how to react when they first find out. As a result, they may withdraw from the situation and the baby. Rejection can also be silent with the family member holding it inside.
Another form comes from focusing on finding a perfect prosthesis which can become more about making the child "whole" or "fixing" their limb, instead of the reality of what the child can achieve with his or her own body.
Parents may feel varying degrees of sadness or depression when they learn their newborn baby doesn't have the 10 fingers and 10 toes they were imagining. Parents are suddenly faced with a reality they know little to nothing about. Not knowing how to help your child can make parents feel helpless, afraid and inadequate.
Overwhelming feelings can cause parents to become depressed, so dealing with them early on is essential.
Parents often worry about how their child will cope. A million questions may pop into your head.
Will he be able to swim or ride a bike?
How will others react?
Will he be made fun of?
Will her self-esteem be affected?
Will she be able to drive?
Meeting other families who have had similar experiences can help ease these worries and give you a more realistic idea of what to expect. It is also wonderful to see how successful and athletic other children are with similar amputations to your child. This is hopefully when parents start to realize that there is no limit to what their children will be able to achieve!
CHAMP also has a wonderful program for matching families.