Siblings of Children with Special Needs - Siblings of ADHA Children

Written by Sarah-Jayne Bass

An adult sister remembers:

I am one of five girls. I am the eldest and was 11 years old when Helen was born. She was a beautiful baby and I fell in love with her instantly.

However, as time went by I gathered from various overheard conversations that something was seriously amiss. Helen had profound physical and mental disabilities and there was a lot of disagreements between my parents on the best thing to do. There were loads of visitors and phone calls but noon ever really explained what was going on.

Eventually my parents joined the local Mencap group. They found this very helpful but I was not keen on having to join them in attending the social activities when I preferred to see my own friends.

One of the difficult things for me was not having enough of my parents 'attention. As the eldest I was often the "little mother". I felt obliged to be supportive to my parents and felt guilty about resenting this. It was not acceptable to complain about Helen's behaviour even though she often bit or attacked us. I was told how lucky I was to have a sister like Helen - a view I did not always share!

It was not until I became an adult that my sisters and I actually talked together about our experiences of growing up with Helen. As a parent myself now I understand how tough it was for my parents. I realise too, that I would have had to compete for attention anyway with four sisters even if one had not had special needs. These days one of my greatest pleasures is the delighted smile on Helen's face when she sees me.

How one family planned for the future:

Ever since I was a teenager I've been anxious about who would care for my brother when both my parents die. I have three brothers of whom John is the youngest. He is 25 and has learning difficulties. He has always lived at home with my parents. I used to feel concerned that my parents had made assumptions about who John's main carer would be and they seemed unwilling to consider any alternatives Three years ago I encouraged them to hold a meeting with all the key family members, including John, to talk about his long term care arrangements. We had a fairly formal meeting, which my husband chaired. We began by acknowledging that Mum and Dad would not be around forever to look after John and that we should get some sort of plan down in writing which we could review a ta later date.

Then we each took it in turn to say what we felt would be the most positive arrangement for John and what level of involvement we wanted to have in his care. It was great having someone chair the meeting so that we were not interrupted even if we said something that others disagreed with. I was actually surprised at how much in common our views were, and how each of us wanted to contribute to John's care. The main areas where we felt differently were about how much money my parents should put into a trust, and about what rights John had as an adult. I certainly felt for the first time that I had a chance to say what I felt about these things.

We came to a joint agreement about what should happen and about what financia1 support would be available. We recognised that there were some issues that we still felt differently about. We agreed to review our plans in 5 year's time, or in the event of changing circumstances.

At the end of the meeting I felt very relieved that at last there would be something on paper, and that we all were sharing the responsibility for John's care. Since then my father has died and I'm so glad he had the chance to say what he wanted for John.

Working Together for Siblings

Parents are already short of time and energy and mustn't feel that they have to handle everything alone. Those who belong to support groups maybe able to swap ideas with other parents or they could suggest a discussion about siblings at one of their meetings. Any of the agencies a family is in touch with can play their part in supporting siblings, whether health, social services, education or from the voluntary sector.

Increased awareness by professionals of the other children in a family, and recognition of their special situation, can help these siblings to feel that they are part of what's going on. Some of the ways in which this might happen include:

• professionals speaking directly to siblings to provide information and advice
• listening to the sibling's point of view - their ideas may be different to those of their parents trying to understand the particular rewards and difficulties they encounter and how these may affect their daily lives
• offering someone outside the family to talk things over with in confidence
• providing support that is flexible enough to accommodate the needs of siblings as well as the child with special needs and their parents