The Australasian Tuberous Sclerosis Society

At the 2004 ATSS Family Weekend we spent some time discussing siblings of people with TSC. Read on for an article related to this area. This article was printed in the March edition of Reachout, the Journal of The Australasian Tuberous Sclerosis Society.

by Tracey Mellifont.

Services that promote Family-centred Practice try to work in partnership with families in providing the best possible service to their children and also to provide support to families. This often means meeting with parents or other carers, identifying family goals, providing services to families such as counselling or case co-ordination through the Family Caseworker, providing Parent Information Workshops and other resources (such as this newsletter). All of this takes a lot of time and effort from families in addition to the other therapists/services they have to see, caring for their child on a day-to-day basis and running a home. And we appreciate your help.

But there are some members of the family we usually don't see - except for a couple of minutes if they are with parents dropping the child off here at preschool. These are very important members of the family. We would like to recognise and value their experiences and contribution as well. These are the family members who can help the child with special needs in many important ways:

• Learning to express a range of emotions, including love, loyalty and anger
• Learning to share, take turns and be patient
• Learning how to play and have fun
• Learning how to make friends and develop social skills
• Learning how to compete and try your best
• Learning about the latest fashions, music, games or fads
• Having a lifelong companion

Of course, I'm talking about SIBLINGS !!!!!

Younger or older, all siblings have a special role in a child's life. There is a lot siblings can contribute to children with special needs, and there is also a lot they can gain from having a "special" brother or sister. Siblings of children with special needs often learn to be more compassionate, more open minded and more tolerant adults. They can develop a sense of appreciation for the "little things" in life, and draw inspiration from the strength and struggle their brother/sister with special needs has experienced. But sometimes, there are also some challenges they face.

Families of children with special needs often face a range of challenges. These can include the fear/worry/stress for their child's health and well-being, isolation from friends and sometimes extended family, stigma in the community, financial stress and/or unemployment, confusion/frustration trying to access services or decide what is the best treatment available, the physical demands of caring for their child and attending appointments, which can result in health problems for parents or at the very least chronic tiredness and fatigue. And there is the ongoing grief that families experience.

As part of the family, all of these factors impact on siblings too. While many parents want to protect all of their children from such stressors, the reality of family life means that siblings will probably experience at least some of these.

Some of the ways siblings can be affected include:

• Feelings of isolation - siblings can feel different from their peers and may find it difficult to talk to them about their experiences
• Attention - children with special needs often require a lot of their family's attention, and siblings can sometimes feel ignored
• Anger and resentment - when the family's social life is restricted, when the family is stigmatised by others, when they see their parents stressed or upset, or if there are different rules and routines for their sibling
• Caregiving and responsibility - some siblings take a lot of responsibility for "looking out for" or caring for their brother/sister, which may reduce the amount of time they spend socialising or playing Worries - siblings may worry about the future for their brother/sister; younger children can also worry that they may "catch" a disability whereas older siblings may worry about having their own children in the future.
• Disrupted relationships - with their brother/sister with special needs when they can not share play experiences; and sometimes with their parents who may be stressed emotionally and/or have limited time
• Grief - feelings of loss and longing for a brother/sister without special needs.

Parents are usually aware of at least some of these possible effects on siblings, and will try their best to prevent this happening. Sometimes, though, in our efforts to "protect" siblings, we may be making it more difficult for them to cope.

One example of this is the information siblings receive about the special needs of their brother/sister. How much information do we give siblings about the special needs? Does this information need to change as siblings become older? What can we teach siblings to say when other people ask about the special needs of their brother/sister? How do we explain the purpose of different types of treatment and therapies to siblings? While parents are frequently involved in meetings to discuss their child's needs, siblings are not. This can heighten their sense of grief, anxiety and isolation, as they have very little input or control over the situation.

Similarly, parents may also want to protect siblings from the worry and stress they feel, and therefore try not to express negative feelings in front of them. Most children, however, know when their parents are stressed or unhappy, Hiding these feelings sends the message that it is not OK to express negative feelings. Siblings may feel particularly guilty for having negative feelings about their brother/sister at times, but they need to know that it is normal for all people in families to feel negatively about each other sometimes.

HOW CAN WE IDENTIFY SIBLINGS’ DIFFICULTIES?

Like all children, siblings can express their concerns and difficulties in a number of ways, These can include:

• Being a "people pleaser" and putting their own needs last all the time.
• Disruptive or aggressive behaviour
• Withdrawal from family or friends
• Trying to be perfect all the time, but feeling like a failure
• Anxiety which can be manifested in physical symptoms such as sleep problems, headaches, stomach aches, etc.
• Depressive feelings such as seeing the future as hopeless or themselves as not worthwhile.

WHAT CAN WE DO TO HELP SIBLINGS?

Give permission to siblings to express their feelings, both positive and negative. These can be feelings about their brother/sister or in general. You can give permission by expressing your own emotions appropriately. Don't always try to hide negative emotions-have a cry, get some comfort from the sibling or another family member, and show that you can then cope and continue on. This is a much more helpful skill for siblings to learn. Another example is how you respond to public situations or challenging behaviour by your child with special needs. Afterwards you can say to siblings "I felt embarrassed when everyone stared at us at the shops" or "Isn't it hard when John screams for so long". This is not criticising or blaming the child with special needs, but rather expressing normal responses to the stressful situation you all found yourself in.

Give siblings information about the special needs at a level appropriate to their development. It can also be important to ask siblings what they think or believe about special needs, to be sure they do not have any inaccurate fears. One parent told me that when she asked her children what they thought was different about their sister with special needs, one of her daughters said "she smiles funny". This was something the parent had not noticed, but to a young child it was important.

Use a strengths approach with siblings, asking them to identify the things that make them special, and also the things that make their brother/sister special. You can use this idea to make " I am special because..." posters for children.

Prior to meetings with services, ask siblings what changes they have seen in their brother / sister's abilities and what do they think are their needs? Explain the purpose of the meeting and that you will consider their opinions and concerns in planning services.

Give siblings the opportunity to visit the services, groups or schools their brother/sister attends. Talk to siblings' school, so that they will support the occasional visit to services be alert to any problems the sibling may experience at school (like teasing) and perhaps link them up with other siblings at the school.

Encourage siblings to attend Sibling Groups or they can join on-line groups at www.siblingsaustralia.org.au

Reprinted with kind permission from Miller Community Preschool & Early Intervention Service Acknowledgment is also made of the organisation Siblings Australia, which has a website providing lots of useful information.