Once again this has been taken from the "Dealing with the Feelings" booklet as mentioned in the previous posts.
"Coping" doesn't mean you don't find life difficult sometimes, it means you find ways to live with the situation most of the time. The following are some ways that people managing the "disability juggle" have found useful.
CHANGING "ACCEPTANCE" TO "LEARNING TO LIVE WITH IT"
When loss of any kid occurs grieving people hear a lot of advice from others about the need to accept what has happened. When a child has a disability this is a particularly unreasonable expectation. Though you might be able to find silver linings for this cloud sometimes, the fact remains that for many people it is a cloud, at least at first. Sometimes life doesn't make sense and isn't reasonable and fair. Don't let anyone underestimate how hard it is to abandon your dream of life as it might have been to take on the reality of life as it is now. You don't hve to feel good about this, but facing the reality of it so that you can put your energies into dealing with the situation, rather than fighting if, does make things more manageable. Obviously some people find this easier to do than others.
HAVE A SENSE OF HUMOUR
Parents love to have a laugh about the sometimes appalling situations they find themselves in with someone who's been there and understands. Family members often find that habing a good laugh relieves tensiion and lifts their spirits like nothing else can.
DEVELOPING A POSITIVE AND COOPERATIVE SPIRIT IN THE FAMILY
When your family is faced with a lot of demands its worth investing time and effort into building this kind of spirit when you can. Prioritise things that yo enjoy as a family when you can. A cooperative spirit is also created when families talk through issues and make decisions together.
USING YOUR STRENGTHS
Living with chronic sorrow associated with having a child with a disability can leave people feeling inadequate and helpless. It often helps to think about your strengths and how you might use them to cope with the situation. ie if you are a people person, make sure you get out with others or join or start a support group.
LOOKING AFTER YOURSELF
Ask many parents of a child with a disability where their own needs come in relation to everyone elses and they'll usually admit that they put themselves at the bottom of the list. Mothers are especially good at this kind of self-sacrifice, but they are also often the first to agree that a break makes a big difference in their attitude to carrying on.. Doing something you enjoy, getting out and reminding yourself that there is life outside your usual routine really helps.
Well that is all the booklet has for coping, and again I am compelled to say it, God bless all parents raising a child with a disability, doing the disability juggle.........
Sunday, May 16, 2010
Tuesday, May 11, 2010
More on Chronic Sorrow....
Yes more depressing stuff - but hey it may just help someone out there understand that what they are feeling comes with the territory.
Again a lot of what is written here is quoted directly from the "Dealing with the Feelings - Coping with your child's disability" booklet as per last post.
HOW DOES CHRONIC SORROW AFFECT PEOPLE?
In a word, differently! But some of the more common feelings are:
FEELING GUILTY
Many parents find it hard to admit to thenselves or each other that they are grieving abou their chil's disability. To do so seems like a betrayal of their child, as if they would love them more if they were "normal". They may feel guilty about their feelings of resentment or longing that things could be different.
LOOKING FOR SOMETHING OR SOMEONE TO BLAME
They may search for something or someone to blame in an attempt to make sense of what has happeneed. Where there isnt an obvious reason, parents may blames themselves either rationally or unrationally
FEELING ANXIOUS
Every parent feels anxious about their child's wellbeing and safety, but when your child has a disability they are more vulnerable.
Having a child with a disability can make people feel anxious for another reason too. Suddenly they are dealing with difficult, relentlessly stressful issues. They might feel out of control of their life and become anxious about what else might be in store for them and/or their child or they may feel like they can never truly relax.
LIFE IS UNPREDICTABLE
For parents who like to have a strong sense of being in control of their lives this inability to manage their life can feel very stressful.
FEELING NUMB
Some people deal with very painful feelings by shutting down emotionally. They function best by keeping a lid on strong feelings of sadness, anger or fear.
NEEDING TO FIND MEANING
The Why us, why our child, why has this happened thinking.
FEELING BITTER AND CHEATED
Many parents feel like they have been cheated - that they have been dealt an unfair hand....
FEELING ALONE
Parents sometimes feel like they are under siege, standing all alone with their back against a wall. In a world designed for "normal" people, whrer their family life is very different, such parents often feel very alone.
Well next week will be a bit more positive with some keys to coping............
Again a lot of what is written here is quoted directly from the "Dealing with the Feelings - Coping with your child's disability" booklet as per last post.
HOW DOES CHRONIC SORROW AFFECT PEOPLE?
In a word, differently! But some of the more common feelings are:
FEELING GUILTY
Many parents find it hard to admit to thenselves or each other that they are grieving abou their chil's disability. To do so seems like a betrayal of their child, as if they would love them more if they were "normal". They may feel guilty about their feelings of resentment or longing that things could be different.
LOOKING FOR SOMETHING OR SOMEONE TO BLAME
They may search for something or someone to blame in an attempt to make sense of what has happeneed. Where there isnt an obvious reason, parents may blames themselves either rationally or unrationally
FEELING ANXIOUS
Every parent feels anxious about their child's wellbeing and safety, but when your child has a disability they are more vulnerable.
Having a child with a disability can make people feel anxious for another reason too. Suddenly they are dealing with difficult, relentlessly stressful issues. They might feel out of control of their life and become anxious about what else might be in store for them and/or their child or they may feel like they can never truly relax.
LIFE IS UNPREDICTABLE
For parents who like to have a strong sense of being in control of their lives this inability to manage their life can feel very stressful.
FEELING NUMB
Some people deal with very painful feelings by shutting down emotionally. They function best by keeping a lid on strong feelings of sadness, anger or fear.
NEEDING TO FIND MEANING
The Why us, why our child, why has this happened thinking.
FEELING BITTER AND CHEATED
Many parents feel like they have been cheated - that they have been dealt an unfair hand....
FEELING ALONE
Parents sometimes feel like they are under siege, standing all alone with their back against a wall. In a world designed for "normal" people, whrer their family life is very different, such parents often feel very alone.
Well next week will be a bit more positive with some keys to coping............
Tuesday, May 4, 2010
Chronic sorrow and grief
The following post has parts directly quoted from the booklet "Dealing with the Feelings - Coping with your child's disability", written by Lois Tonkin with Dr Pauline Stewart.
When people talk about grief, they usually mean the loss they feel when someone dies. But other losses bring grief with them too.... People with a disability or child with a disability experience many losses, a living loss.
THE LOSS IS ONGOING
Though parents come to love the child for who they are, they may still grieve for how things might have been if it weren't for the disability and as the child grows older the difference between what might have been and the reality of what is constantly changes, therefore parents must adapt to new losses as their child grows older....
THE LOSS IS UNACKNOWLEDGED
Many parents say that the only people who understand how they feel are other parents with a child with a disability. And because other people don't acknowledge their ongoing loss, many parents don't feel supported in their struggles to deal with it.
THERE ARE CONSTANT TRIGGERS
The frequent reminders that their child will never be able to do many of the things most children of the same age can do bring a sorrow that never goes away completely. The feelings of grief that comes with having a child with a disability are always "in your face" because the reminders are always there.
SOMETIMES THE LOSS IS HARD TO PIN DOWN
Many parents talk about feeling cheated. Their child is not the healthy, normal child they expected. They find it hard to accept the disability that has robbed them of the future they hoped for, for them and their child, they grieve for what should have been...
Grief theorists call this grief Chronic Sorrow."
When people talk about grief, they usually mean the loss they feel when someone dies. But other losses bring grief with them too.... People with a disability or child with a disability experience many losses, a living loss.
THE LOSS IS ONGOING
Though parents come to love the child for who they are, they may still grieve for how things might have been if it weren't for the disability and as the child grows older the difference between what might have been and the reality of what is constantly changes, therefore parents must adapt to new losses as their child grows older....
THE LOSS IS UNACKNOWLEDGED
Many parents say that the only people who understand how they feel are other parents with a child with a disability. And because other people don't acknowledge their ongoing loss, many parents don't feel supported in their struggles to deal with it.
THERE ARE CONSTANT TRIGGERS
The frequent reminders that their child will never be able to do many of the things most children of the same age can do bring a sorrow that never goes away completely. The feelings of grief that comes with having a child with a disability are always "in your face" because the reminders are always there.
SOMETIMES THE LOSS IS HARD TO PIN DOWN
Many parents talk about feeling cheated. Their child is not the healthy, normal child they expected. They find it hard to accept the disability that has robbed them of the future they hoped for, for them and their child, they grieve for what should have been...
Grief theorists call this grief Chronic Sorrow."
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