Siblings

Brothers and Sisters of Children with Special Needs

Kate Strohm

• Publisher: David Fulton Publishers
• Year: 2014
• eBook ISBN: 9781134022212
• Edition: 1
• Topic: Education
• Subtopic: Education General

The siblings of children with special needs are often the overlooked ones in families struggling to cope.

Kate Strohm is an experienced health professional and journalist who has sister with cerebral palsy. In this book she shares the story of her journey from confusion and distress to understanding and acceptance. She provides a forum for other siblings to describe their own journeys.

Kate also provides strategies that siblings themselves, parents and practitioner can use to support the brothers and sisters of children with special.

Strategies

Introduction

The shared stories of siblings raise a multitude of issues for families and health practitioners. In the next section I describe a range of strategies, for adult siblings, parents and service providers, which may help to counter any negative impact that growing up with a disabled child in the family can have on siblings.

Adult siblings will discover ways to accept the role their sibling has played in making them who they are. Parents and service providers who are involved with families with young siblings will discover ideas for providing support and preventing problems arising.

Chapter 9 explores how adult siblings can gain understanding, discover needs, learn to express feelings and gain support, both from within and outside the family. The process involves making sense of the past and looking more confidently toward the future. Through exploring the difficult parts of your story, it might be possible to highlight some of the good things gained through your experiences.

Younger siblings are especially reliant on parents and service providers. Chapter 10 offers strategies for parents to build stronger families and chapter 11 includes specific strategies for supporting young siblings. Through focusing on building stronger families we can ensure siblings develop into stronger children and adults. A strong family can help a child adjust more positively to his or her situation.

Service providers are also able to help siblings through direct intervention and by assisting parents to learn ways to support all their children. Chapter 12 offers strategies for practitioners and advises parents how effective practitioners can help the family.

9

Adult siblings

Making sense of the past and moving forward

If you are a sibling, it is likely you have had a range of reactions after reading of others’ experiences. You may have felt huge relief to realise others feel the same way as you do. On the other hand, you may not have related much at all to the stories here. Your story may be a more positive one; you may feel at ease with the influence your brother or sister has had on your life; you may be more comfortable with the future.

It is important to remember we each have different responses to being a sibling of someone with special needs, and all these responses are valid. For those who have experienced difficulties it might be helpful just to know that you are not alone in your experiences, and that there are steps you can take to help deal with your concerns.

I have learnt that the most important way to heal and grow is to understand the feelings we experience and be able to express them in an environment of validation and support. To gain strength it is important to understand how you have been influenced by your childhood experiences, and what your needs are now. How have your feelings affected your behaviour? What are the implications for your family and other relationships now? How might these relationships be affected in the future?

You need to use the information in this book in your own way and time. Of course, if your experience was largely positive, you may not need to go through all the steps suggested here. Reading through them, however, may still give you an opportunity to grow.

Gain understanding

Think about how your feelings as a child may have been reflected in how you behaved or thought about things, and whether you are still following similar patterns in your life. Did you act out your feelings in disruptive behaviour, or did you withdraw? Have you become a ‘people pleaser’, or do you strive for perfection? Do you feel overly responsible for everything and everyone? Do you feel guilty about the happiness in your life and as a result have you developed self-harming or self-defeating behaviour? Do you feel guilty if you start to think of the not-so-good aspects of your childhood?

As you think through these questions, don’t be surprised if defensive reactions sometimes build up that prevent you from recognising the pain of childhood. It can be difficult to acknowledge the effects of our experiences as it feels like we’re blaming parents and others. This just adds to the guilt. The process can be a slow and painful one, as Tara explains.

As a professional in child health, I was drawn to siblings and I facilitated the development of several support programs. After about six months I picked up a book written by a sibling and literally fell apart. It took this powerful story to allow me to recognise my own childhood and to understand my fears, my passion, my grief. It was the start of a very powerful and pain-laden recovery.

Like Tara, the first book I read on sibling issues touched me in indescribable ways. It resonated with something hidden within me and, with every word, the burden I had carried for all those years seemed gradually to lighten. I couldn’t get enough. As well as gaining understanding, the knowledge that others had similar experiences created enormous relief. To discover that this is a genuine field of study was an incredible source of validation for me.

I wrote earlier that some siblings have found a close relationship to be a catalyst for looking at some of these issues. One sibling had difficulty expressing anger with her husband and realised, through therapy, that this was largely due to her inability to express any negativity as a child. Over time she came to realise that you can indeed love someone and be angry with them at the same time. Others have discovered that they allow a partner to ‘walk all over them’ or feel that they don’t deserve to be cared for and cherished.

Being a sibling

In order to improve your understanding you might like to think about the following aspects of your childhood. They might act as cues for you to write about your experiences, and they might help you to become more aware of what you are feeling, and why.

How did you find out about your brother or sister’s special needs?

What were the effects of the special needs on your family relationships?

What were the effects on your parents’ marriage?

Were they were supportive of each other?

Did your parents seem depressed or angry?

What are your feelings about the disability, your brother or sister and yourself: the good things and the not-so-good things?

How do you feel if you think or write about your negative reactions/feelings?

How do you feel about the responsibilities assigned to you?

Were you acknowledged for the help you gave?

Did you try to be the ‘good’ child or try in other ways to be perfect/successful?

Did you withdraw or misbehave when things were difficult?

What was your experience of school?

Was there open communication in your family?

If you couldn’t talk of feelings in your family, were there others with whom you could talk?

What messages did you receive from parents and others about how you should behave/feel?

Did you have opportunities for privacy?

What fears did you have for your brother or sister, such as concerns for their survival?

Did you have fears about them hurting you or damaging your things?

Did you have any other fears?

Did you feel your parents ‘spoiled’ your brother or sister with special needs?

How fair did you feel things were in your family?

Has guilt played a part in your life?

What have been the effects on your education and other recreational activities?

What have been the effects on your social life and relationships?

Were you embarrassed?

How did you respond to teasing directed at your brother or sister or at you about them?

Have you been included in plans made for your sibling, such as respite, accommodation, guardianship?

Do you have anxieties about the future and your responsibilities to your brother or sister?

How has your sibling with a disability influenced your plans for the future, such as your choice of career and so on?

How do you explain your brother or sister to others?

Can you talk to friends and family about your brother or sister?

Do you know other siblings?

What are your feelings about having your own family?

In my own relationships, I gradually came to understand the difficulty associated with expressing negative feelings, the need to be perfect and my fear of displeasing others.

Another step toward understanding for me involved recognising feelings of grief. During a period of therapy, I wrote a letter to my sister. As I sat at the computer, having written a half page, the tears started to flow. I thought they would never stop and that they would engulf me. I cried for her, for me, for my parents. And yet, in some ways, I still hadn’t identified the feeling as grief. It took me even longer to see that much of what I had bottled up inside was indeed grief. It had been such a disenfranchised grief; a grief that no one ever mentioned. Through reading and talking with others, I was finally able to understand.

Many people have difficult childhoods. There are a range of reasons why children grow up with fears, uncertainties and low self-esteem. As adults, there is little point in dwelling on these and wallowing in self-pity and blame. However, there is a need to examine the difficult experiences, identify the pain, sit with it and understand it. This starts the healing process. Getting in touch with true feelings, either through reflection, reading or therapy can be very difficult and painful but, in the long term, leads to greater freedom. The pain may never go away, but it can help if you understand and recognise the feelings as they arise: the grief, anger and guilt.

For Josie, the process of reaching understanding was similar to mine.

If someone asked me three years ago if I had any negative feelings associated with my family and my brother, I would have been shocked. I wasn’t dealing with all of these issues and feelings then. I was living my life as I thought I should, making all my decisions based on what a ‘good’ daughter and ‘good’ sister would do. But there was an unsettling feeling that I always had, as if something in my life was unfinished, untrue, fake. I was leaving things buried deep within me because, if brought up, they would cause pain, heartache, arguments, discomfort, hurt feelings – everything that I strived so hard to avoid.

When I met my fiancé, things started to change. Much to my dismay, thoughts and feelings that I had pushed deep down inside of me were making themselves known. With a little encouragement from my fiancé, I began talking about them to him and him only. These were my terrible secrets (my guilt, my anger, my sadness, my resentments) and there was no way that I would ever tell anyone else.

Later I had this urge to find information on sibling issues. Having contact with other siblings helped me. It was like a part of me was found. I have been trying to uncover the ‘real’ me, the one that has stayed buried for so long, scared of disappointing others, scared of hurting others. It is hard. I have cried more in the past 18 months about my brother and my family than I have in my entire life. I have been more angry with my family than I ever have before. I have been on an emotional roller-coaster, with all of these buried feelings coming out – the feelings of a three-year-old child along with the feelings of a 25-year-old adult, all mixed together and needing to be heard, acknowledged and accepted.

Despite all of the tears and emotions, the result is unbelievable. I am on my way to being the true me; I am learning how to deal with my feelings of guilt, my chronic sorrow, my feelings of missing the brother I could have had, the deep, indescribable love that I have for him.

Discover your needs

Each sibling has his own story and his own needs. The first step in your own journey is to discover what you need, both practically and emotionally. Some siblings have always felt supported emotionally and need only to find out practical details about caring for a sibling in the future. Some need to determine their own risks if they decide to have children. Others have grown up with little or no emotional support and can’t even think about the practical issues. Some have distanced themselves completely from their family and their brother or sister with special needs. There may be denial and a range of repressed feelings. These siblings need to understand their own emotions and reactions, and to have some way to express those in an environment where they feel safe.

Looking at your childhood and feelings and reactions from that time doesn’t mean that you need to lay blame. In fact, with more understanding it might be possible for you to forgive yourself or others in your life. Even if you feel positively about your brother or sister, lingering sadness may be hindering your own growth. You may feel protective of and inspired by a sibling, but there may still be some feelings that need exploring. Many people have good relationships with their brother or sister with special needs all through their lives. Practical problems can, however, still stir up emotions. These problems might be caregiving responsibilities, ageing parents, or a brother or sister moving into a group home. If the childhood relationship was troublesome and never dealt with, these problems can be compounded in adulthood.

For years I went to therapist after therapist, struggling each time with what I needed to do. I would be given behavioural techniques such as taking deep breaths when the panic took over, or making my ‘self-talk’ more positive. These approaches always left me feeling worse because I didn’t seem to have it in me to change. I felt I let myself down and let the therapist down too. If I sensed any impatience or annoyance on the part of the therapist, that just added to my inability to change. I felt totally inadequate. There was never any real discussion of my family experiences.

Some siblings can benefit from cognitive-behavioural techniques, which focus on changing the way a person thinks and behaves. These approaches may have helped me too if they had been carried out in a more nurturing environment and in the context of my family background. Most therapists I saw meant well but had no understanding of sibling and family issues. Such inadequacies in therapeutic intervention cost me a huge amount of anxiety and money.

I realise now I didn’t need to do anything specifically. What I really needed was simple guidance to help me to understand my reactions – grief, guilt and anger – and to feel accepted for who I was, and gain support from others in the same situation. Once I understood the feelings, I needed to express them. I needed to understand that by exploring these feelings I wasn’t being self-indulgent or disloyal to my family.

Not everyone needs to see a therapist. There are other resources that can assist you to ...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Foreword by Graham Vimpani
• Preface
• My Story
• Other Sibling Stories
• Strategies
• A final word
• Acknowledgements
• Resources
• Index