Support for grandparents and others
If you have no experience of disability, or neurodiversity, it can be daunting and you may feel unsure about how to help.
The articles and guide on this page offer some insight into how it can feel to be a parent who is suddenly confronted with their child’s difference, and some ways in which you can help.
How can friends and relatives help?
Inspired by a document written by the Cerebral Palsy Association of Western Australia
When a child is diagnosed as having additional needs, the parents face many new emotional and physical demands. In the beginning they have to learn to cope with the additional needs of their child.
Parents also have support needs themselves which require special understanding from family and friends.
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. Some physical disabilities mean 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. Or the child may need close supervision for a simple task like putting on a coat.
- 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 doctor.
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)
- 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 condition. 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 the child’s additional needs.
Therapy and Medical Appointments
Parents of children with additional needs can 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 their child’s condition, 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 additional needs.
Support and empathy
Parents of children with additional needs 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:
- 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?”
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 parents 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 additional needs. 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 guilt 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 the condition, 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 planning 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 may have difficulties with feeding, dressing, toileting, bathing, heavy lifting, play, therapy, placing splints on, the need for constant supervision.
- 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, for the more seriously affected children.
- Less choice or freedom in activities and plans as the additional 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
- 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 if the cause of the condition is not clear. 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 may require regular lifting of the child and of many pieces of equipment (walking frame, pusher, wheelchair). There may be 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 adapted car, medication, respite costs, equipment, special toys).
- Returning to work is difficult due to treatment and lack of decent childcare.
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 else 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 additional needs or the child.
- Be open and interested in finding out more about the child’s needs.
- 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 additional needs.
- Offer emotional or practical support to the parents when possible.
- Try to keep communication lines open. Make a habit of simply phoning to say hello.
Welcome to Holland
This wonderfully written article describes the disorientating experience of learning that your child has a disability.
CLICK HERE TO READ THE ARTICLE
Contact – Grandparents Guide
Contact have produced a useful booklet for grandparents, which can be downloded using the link below: