HOW CAN I HELP?
 Information for friends and relatives of a child with cerebral palsy.
 
   The Cerebral Palsy Association of Western Australia Ltd, May 1995.
     
How Can I Help? is reproduced on the World Wide Web with the kind permission of the The Cerebral Palsy Association of Western Australia Ltd. For an explanation of general copyright conditions refer to the Copyright Notice at the end of this article. Please provide your comments and thoughts on this booklet by sending some feedback.
 

Acknowledgements

This booklet was developed with the help of a small group of parents in the Children's Services programme. Many thanks are extended to Sue Moscardini, Debra Eldridge and Karon Hayes, who inspired the making of this booklet and made considerable contributions to its content.

Thanks also to Rebecca Coleman Carman, who compiled and developed the initial drafts of the booklet.

 HOW CAN I HELP?

When a child is diagnosed with cerebral palsy, the parents face many new emotional and physical demands. In the initial years they have to learn to cope with the special needs of their child. Parents also have special needs themselves which require special understanding and support from family and friends.

HOW CAN RELATIVES AND FRIENDS HELP?

 Talking With The Family

Keeping an open relationship with friends and relatives is one of the most effective ways to reduce the pressure on parents of a child with a disability. The following suggestions may help you to develop the type of communication that the family will appreciate:

Be open and honest about your own feelings about the child when speaking to the child's parents.

Listen actively when you talk with the child's parents (more than "hearing" what the parents have said "think about what they tell you and what they may be trying to tell you").

Keep communication lines open. Be available to talk, to listen and to encourage the child's parents. For example, arrange a time for a coffee and a chat.

Ask questions. If you do not know what parents need from you, simply ask them.

Allow more time than usual for tasks to be done. Be patient with the parent and child. The physical disability associated with cerebral palsy means that tasks take more time and less speed. For example, it takes much more time to get in and out of the house and car.

Accept the parents' honesty about the problems their child has and may face in the future. Parents will not lie about their child's disability as they have nothing to gain from it.

You may want to more fully understand the child's strengths and needs. If you feel your relationship with the parents is very close, you may consider asking the parents if you can go with them to a session with therapists or a medical practitioner.

 Dealing With Denial

One of the most difficult things for parents to deal with is the denial of their child's diagnosis from family and friends. Worrying about how to deal with the reactions of their own relatives and friends creates further pressures for the parents of a child with a disability.

There are ways of reacting that can create additional burdens for the parents who are attempting to cope with the day to day reality of having a child with a disability. Some of these are:

  • denying that the child has a problem ("Don't worry, there is nothing wrong"),
  • trivialising the difficulty ("He will grow out of it with time"), or
  • hoping for unrealistic cures ("It is amazing what doctors can do these days").

With parents, denial is part of the normal reaction to the news that a child has a disability. Denial helps avoid the pain and grief associated with the diagnosis. However, with time and support a degree of acceptance can be achieved.

Even though you may not be the parent of the child, it is normal for you also to have difficulties with denial or grief over the child's disability. You may think about seeking support for your own needs and feelings in order to better support the parents and the child.

The opportunity to exchange information and to discuss feelings with relatives of other families will provide you with mutual support in the acceptance of the diagnosis of cerebral palsy. To arrange a meeting or phone contact with another family or to form a small group you may contact a Social Worker at the Cerebral Palsy Association of Western Australia by phoning 443 0211.

 Therapy and Medical Appointments

Parents of children with cerebral palsy see many medical practitioners, therapists and other professional and care staff. These people have the best interests of the child at heart when suggesting therapy and courses of action to follow. As parents often face many "unknowns" with cerebral palsy, the professional expertise and advice they receive is very important to them. As a family member or friend it is important that you support the advice and efforts of the professionals that the parents trust and respect, even though you may not agree with what they are doing.

Your acceptance and support is both necessary and valuable to families with special needs.

SUPPORT AND EMPATHY

Parents of children with cerebral palsy have very real reasons for needing extra support from the people who are close to them. This includes both emotional and practical support.

 Emotional Support

You can help the family by:

  • being there to talk,
  • listening to the concerns and frustrations of the parents.

Emotional support is the most important support that can be offered by family members.

 Practical Support

You can provide reliable help to the parents on a regular basis. Offer help with:

  • shopping,
  • errands,
  • childcare,
  • chores, and
  • emergency situations ("being there" to look after the other children during an emergency).

If you can offer to make regular visits to provide help, the commitment to reliable practical support lets the parents plan their busy schedules more smoothly. You could talk with the parents about going around once a week at a particular time and doing an hour or two of washing or gardening to lessen the load. However, every parent requires differing levels of support depending on their individual situation. The best strategy is to ask "What can I do to help?"

 Empathy

Parents do not want sympathy! What they want is empathy, which is an effort by you to understand how they are feeling and what they are going through. To gain empathy, you could try imagining yourself in the parent's or the child's shoes and walking around in them for a while. Below is an outline of the additional stresses identified by parents caring for a child with cerebral palsy. The following pressures are above and beyond the daily hassles and stressful life events that all families experience. Reading them may help you to understand the family's situation better.

Frustration with not knowing what will happen with the child long term and the difficulty of finding clear answers.

Feelings of guild if not continually attending to the extra needs of the child as well as those of other members in the family.

Questioning why the child has cerebral palsy, and if it could have been prevented.

Dealing with the chronic grief and loss for the "normal" child the parent does not have.

Concern about acceptance of the child into the community (school, shopping centres, playground, church).

Worrying about future planing for adult life (education, employment, having a family, accommodation).

The fatigue that goes with having to continually provide the child with daily care for possibly years beyond normal expectation. Families have difficulties with feeding, dressing, toiletting, bathing, heavy lifting, play, therapy, placing splints on.

The pressure of attending many therapy sessions per week. Appointments may include 3 to 5 days per week at a treatment centre, plus specialist appointments, hospital appointments, reviews and testing.

Less choice or freedom in activities and plans as the special needs of the child must always be met (such as not being able to attend family outings because of therapy; uncertainty about choice of school in the future; will the child be able to attend the local mainstream school?)

Disappointment and frustration at not achieving developmental milestones (not sitting up at expected age, lack of feedback from child due to disability).

Risk of marital difficulties. There can be a lack of acceptance, understanding and support from one partner and additional stresses on the caregiving parent, such as sleep deprivation.

Dealing with the effects on brothers and sisters. How they are feeling or coping with difficulties? Other children may not understand why Mum and Dad spend more time with the child with a disability. Feelings of guilt, rebellion or rivalry are common.

Concern about planning more children due to the unknown causes of cerebral palsy and the unknown outcome of future pregnancies. Parents are uncertain about whether it could happen again to the next child, and whether they could cope if it did.

Feelings of being "trapped" because of the physical efforts and extra organisation needed to go out (from simple family picnics to longer, planned holidays). Travelling for all outings requires regular lifting of the child and of many pieces of equipment (walking frame, pusher, wheelchair). There are concerns about enough room in the car, finding places with appropriate facilities, wheelchair access, toilets, difficulties involved in lifting and positioning the child, accommodation, problems with eating out and specially prepared foods. All of these factors make it difficult to plan long term and makes the family less able to make a simple decision to go out.

Always having to put your own needs aside in order to cater for the extra needs of the child.

Financial difficulties (housing modifications, need for a special car, medication, respite costs, equipment, special toys).

Returning to work is difficult due to treatment and special needs of the child.

Having all of these pressures can make the role of parenting seem a difficult and unending struggle. At certain stages, the stresses can appear particularly high. However, parents won't feel all these stresses at the same time. In fact, just like in any other family, feelings of happiness, achievement and satisfaction can be, and are, enjoyed. The main message is for you to be aware of what life may be like for the family. Most burdens can be lightened by the caring support and open communication that you can provide as a relative or close friend.

WHAT CAN FRIENDS DO TO HELP?

The extended family can include friends who are not necessarily blood relatives. Close friends can offer invaluable emotional and practical support to parents. However, many close friends feel uncomfortable about asking about the child's development. In general, parents prefer their friends to be honest, open and interested in their child's developmental strengths and needs.

  • Don't be afraid to ask questions about cerebral palsy or the child.
  • Be open and interested in finding out more about cerebral palsy.
  • Follow the child's development with the parent.
  • Remember that parents do not have as much time to socialise as they may have had before.
  • Don't compare your own children with the child with cerebral palsy.
  • Offer emotional or practical support to the parents when possible.
  • Try to keep communication lines open. Make it a habit of simply phoning to say hello.
     

The Cerebral Palsy Association of Western Australia Ltd published an excellent description of what it is like to be a parent of a child with a disability in the November 1994 issue of the newsletter "Brand News". It is highly recommended that all relatives and friends read the "Welcome to Holland" article by Emily Perl Kingsley. A copy of "Welcome to Holland" is included here for your interest.

WELCOME TO HOLLAND

by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved.

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.

FURTHER INFORMATION:

If you would like any further information or if you would like to talk about the contents of this brochure, then please contact one of the Social Workers at the Cerebral Palsy Association of WA on (08) 9443 0211.

 

COPYRIGHT NOTICE

  • Not-for-profit organisations can reproduce this booklet on the condition that they acknowledge the Cerebral Palsy Association of Western Australia Ltd (the "Association") in so doing; and that it is not used to generate funds in any way;
  • Anyone seeking to reproduce this booklet in whole or in part for the purpose of sale, hiring or other commercial venture must seek written permission from the Association;
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The Cerebral Palsy Association of Western Australia Ltd

106 Bradford Street
Coolbinia
Western Australia 6050
Australia

Telephone: 61 9 443 0211
Facsimile: 61 9 4447299 


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