It is usually the parents that the diagnosis of cerebral palsy hits the hardest. This is even more so if the child has severe cerebral palsy and they find out that their child is going to have quite serious and life long, complex needs. Although there is no doubt that they love their child just as much as they would have done without the disability, they will possibly feel sad that they are not having the child they imagined they would. The usual exciting milestones anticipated in family life will be far from their minds. They will have looked forward to their child taking their first steps, watching their first school play, watching them grow up, get married and then possibly becoming grandparents themselves. Whereas now they will be wondering how they are going to cope, financially, physically and emotionally with caring for their child, not just now, whilst they are little, but also as they reach adulthood. The affect this can have on the whole family is immense. Relationships can breakdown, friendships drift apart but gradually families adapt to their situation and look more positively towards the future.
However, it not only affects the parents of a child with cerebral palsy, but it also affects other family members. The effect it has on siblings can, in some circumstances, be as significant as it is for the parents. All of a sudden they can be catapulted into a world of therapies, appointments and everything the family do, whether it is a shopping trip or a family day out, can be dictated by the needs of the child with cerebral palsy and not their own needs. Naturally a child with cerebral palsy will take up a lot of the parents’ time and the other sibling(s) can feel as though they are missing out on a lot of attention. They may struggle to cope and adapt to this and therefore it is important that they are given the appropriate support they need. Lots of charities for children with disabilities throughout the country offer sibling support services and this is a very important service.
Grandparents will also feel the effects when a child is diagnosed with cerebral palsy. It can be difficult for them to properly understand the condition and what the parents are going through. They will have been looking forward to becoming grandparents, baby sitting duties and all the fun that comes with being a grandparent. However, even something like baby sitting could be difficult tor them if their grandchild has complex medical needs that only the parents are able to deal with. A lot of charities throughout the country offer courses and support groups aimed at understanding cerebral palsy and it can be very helpful for families to take part in these to try and better understand the condition.
A poem I once heard at an ‘Understanding Cerebral Palsy’ course has stuck with me ever since and I think it puts into words very well the emotions these parents and their families go through. The poem is called "Welcome to Holland" and it was written in 1987 by Emily Perl Kingsley, about having a child with a disability. This poem is given by many organisations to parents of children with a disability and I thought it would be good to share it on this forum and hopefully it will help other people too .....
Welcome to Holland, by Emily Kingsley
“I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."
However, it not only affects the parents of a child with cerebral palsy, but it also affects other family members. The effect it has on siblings can, in some circumstances, be as significant as it is for the parents. All of a sudden they can be catapulted into a world of therapies, appointments and everything the family do, whether it is a shopping trip or a family day out, can be dictated by the needs of the child with cerebral palsy and not their own needs. Naturally a child with cerebral palsy will take up a lot of the parents’ time and the other sibling(s) can feel as though they are missing out on a lot of attention. They may struggle to cope and adapt to this and therefore it is important that they are given the appropriate support they need. Lots of charities for children with disabilities throughout the country offer sibling support services and this is a very important service.
Grandparents will also feel the effects when a child is diagnosed with cerebral palsy. It can be difficult for them to properly understand the condition and what the parents are going through. They will have been looking forward to becoming grandparents, baby sitting duties and all the fun that comes with being a grandparent. However, even something like baby sitting could be difficult tor them if their grandchild has complex medical needs that only the parents are able to deal with. A lot of charities throughout the country offer courses and support groups aimed at understanding cerebral palsy and it can be very helpful for families to take part in these to try and better understand the condition.
A poem I once heard at an ‘Understanding Cerebral Palsy’ course has stuck with me ever since and I think it puts into words very well the emotions these parents and their families go through. The poem is called "Welcome to Holland" and it was written in 1987 by Emily Perl Kingsley, about having a child with a disability. This poem is given by many organisations to parents of children with a disability and I thought it would be good to share it on this forum and hopefully it will help other people too .....
Welcome to Holland, by Emily Kingsley
“I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."
Author
Staci Liversedge is a volunteer committee member for the Hull and District Cerebral Palsy Society and a specialist cerebral palsy lawyer at Bridge McFarland Solicitors.
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