This picture was taken last October at our first CHAMP seminar in London, ON. Gavin was 15 months old. Don't mind the lovely 70s decor!
Another really great section in "Parenting the Amputee Child" (based on the work of the War Amps CHAMP Program) talks about how the whole family is affected by the experience of having a child with an amputation.
(Again, I am summarizing in my own words and I do not take credit for any of the following information. )
THE ROLE OF THE FAMILY
The family has a very important role in supporting their child, advocating for them and connecting them with appropriate resources.
What is most important is providing this support in an encouraging and realistic way that isn't overprotective and doesn't underestimate the child's abilities. Connecting with other families who have already been through the same experience can make a world of difference.
It is also very important for parents to explain their child's amputation in a straightforward and encouraging way, which will set a positive tone for others to follow. Family and friends may mean well in some of the things they say and do but its important for parents to be clear about the attitude they want modeled for their child. We were always very clear that there was no need for sympathy or special treatment. Our biggest goal was to empower Gavin to recognize his strengths and have healthy self-esteem.
As everyone gets to know the child they will soon come to realize that they just need to treat him or her like any other children in the family.
Grandparents
Grandparents play an important role in helping the whole family adjust. Especially because children look to their parents for support, no matter how old they are.
Grandparents often experience emotions similar to the parents and may go through some of the same stages of adjustment. Some may even have a harder time coping than the child's parents. Grandparents dealing with their own reactions should face their emotions as quickly as possible because their children will need a lot of their support.
Keeping grandparents informed about the realities of amputation and artificial limbs can help them feel more at ease, with a better idea of what to expect.
Siblings
Siblings will need some special attention to help them understand and be accepting of their brother or sister's limb difference. Just as parents go through so many different emotions, so does a sibling.
Children have such active imaginations and may have fears and concerns that they don't know how to express. They may feel sad, scared or worried. In the case of an accident, they may feel guilty that it was somehow their fault. They may fear that the same thing will happen to them or another family member. They can feel lonely and left out and resentful of all the time the parents spend with their sibling. They may withdraw and not talk about their fears because they don't want to worry their parents.
Its important to openly talk about the cause of the child's amputation. If due to an accident, the sibling may need reassurance about his or her own safety. If due to an illness or disease, it should be talked about in age-appropriate terms.
Siblings may also seem to be coping well at home but be struggling outside the home. It can be helpful to have others that interact with your child to be aware of what the family is adjusting to.
How you talk about amputation with children depends on their age. Its usually around age 2 or 3 that children even notice that their sibling has a limb difference. At that time it should be explained in very simple terms.
Here are some tips for addressing concerns that siblings may have:
- Encourage them to share all their concerns and ask questions. Be open to talking about it.
- Provide lots of reassurance to help them feel more secure regarding their worries
- Help them become comfortable with answering questions that others may ask them about why their sibling's limb is different
- Make time for special one-on-one time with each sibling
- Be sure to include the child with a limb difference in household chores. This sends 2 positive messages: increasing the child amputee's confidence by showing that he or she is capable and sending the message to siblings that there is no favoritism.
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Beautiful family!!!
ReplyDeletethank you! :)
ReplyDeleteI just want to say that I find your blog, and this post in particular, incredibly inspiring... My son was born nearly 5 weeks ago (12/13/12) with a congenital amputation just below the elbow of his left arm due to amniotic band syndrome. He is our second child. Although I am completely in love with him and know that he will do such wonderful things in his life...I am struggling with the thought that he may one day be self-conscious or have feelings of self-doubt. This post has given me a whole new outlook to help squash these concerns... Thank you for posting! :)
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