A Christmas gift from beyond

My next plan was to tell you about my brother, Ben. But what happened Christmas morning changed my plan.
I awoke Christmas morning in my house alone and feeling very sad. I was remembering the Christmases over the past ten or more years I picked Ben up to have him in my home over the Holidays. I was feeling quite depressed and missing my brother. I guess I forgot to mention Ben died four years ago.
I finally pulled myself together and got in my van to pick up my Mother who has Alzehiemer's to spend Christmas with her. After I picked her up I got a whim to get my mail at the post office. I lingered in my van looking through the mail when a woman appeared beside my van. She was a complete stranger and she indicated she wanted to speak to me so I rolled down my window as she proceeded to tell me when she saw us in the van she was compelled to give me a message. She asked if the woman in the passenger seat was my mother and I said she was. The woman said there is a man who was especially close to me, someone who died. Puzzled, I mentioned my Father who passed 38 years ago. She said no, perhaps a brother. I crumbled into tears immediately as she proceeded to deliver a message she said was from him and it left me dumbfounded. She began by telling me he wanted me to know all that incumbered him here is gone. He is happy and busy. He wants me to know how grateful he is for all I did for him. He wants me not to be sad and when I am sad to think about.......and my mind goes blank of all she said he wanted me to think about when I'm sad. I cried as I listened to her speak for about five minutes. I told her I felt guilty for not being able to do more for him. She said he wants me to do something for myself. That I do everything for others and that I must do something for myself. She said he was given an opportunity to deliver a message to someone and he wanted it to be me. She said he sent guardian angels to help me for the rest of my life, but I need to let go and allow them to help. He wants me to stop and smell the roses, breathe, and not be sad. She told me he has a special place in Heaven. Strangely enough, when he was alive, I used to pray that God would give Ben a special place in Heaven because I knew this life couldn't offer him any fulfilment, happiness or freedom. It is very hard to remember all that she said and even put back into words much of what I do remember. It was such a shock. How could this be? Was she real? Was it a trick? What was it? Was it really a message from Ben? She could not have known anything of the things she spoke. Everything fit. All I can hope is that Ben is in an existance of freedom and happiness like she said he is. She said he had only a few short minutes then he would go and when she finished her message she would be gone. She never said her namd and didn't ask mine. This is one of the strangest things ever to happen. But I did tell her it was the best Christmas present I could ever get.
I will tell you next time about Ben then proceed with the life story.
Susan

Getting To Know Me

Before continuing with my story I want to share with you about me. This year was my 60th birthday. 40 of those years were devoted to raising my six children. Heath and fittness is very important to me. I raised my children on fresh, unprocessed foods and ground grains fresh for homemade whole grain breads, muffins, cakes etc. We only used honey and there was no white sugar or flour in our house. No drugs were used in my home. That means no asprin, no antibiotics nor over the counter or prescription medications. I made everything from scratch besides bread was home made yogurt from raw milk and "green drink"
All but one of my children were born naturally with no drugs. The last three were born at home. My youngest child, Michael, was born at home without the doctor.
My passion for "natural living" came from my Mother, Grandparents and Aunts.
Over twenty years ago I experimented with some tie-dyeing that developed into the clothing business I have now. R.A.D.Rags. The pictures on my clothing website ( www.baddragz.com ) of me were taken early this year. Pictures of this year's additional styles did not get on my website.
The purpose for writing my story is to connect with others, who, like me, feel alone in their struggles.
Now the kids are grown and gone. I am alone and my mind is still prisoner to the programs innocently installed into my head by my parents while growing up with my crippled brother born with spina-bifida. The depression and dissapiontment I suffer daily I hope to spare other siblings of handicaps as their parents read my story of tragidy and saddness to see how these programs in my head caused choices that led me to sabatage my happiness, my finances, my peace, security, and sanity.
A parent of a handicapped child can either empower both the nonhandicapped and the handicapped child to live their full potential. They can instill self worth and value into them for life. Or, like what happened to me, they can make cripples of both the handicapped and the non handicapped for life.
You will see through out each stage of my life, in spite of my efforts to change these destructive patterns in me, I did not. It cost me everything. Maybe my story can spare some who are children now of repeating my tragedy.
The handicapped sibling is a piece of the whole family puzzle that changes the entire family picture. Each parent's own feelings and responses about their handicapped child makes them communicate and interact with us ( the non handicapped children) in a way that either strengthens or crushes us. in my case my father's dissappointment and grief toward my brother, Benjamin, caused him to crush me. It was too much pressure on me to make up for the loss he felt in his oldest son. I was not able to fill that loss for him and the burden was one I have not shaken to this day. I beg any parent of a handicapped child to see the non hadicapped child for who he/she is and not to make them fill your own personal void.
We all MUST change our lives, disregard our own feelings, needs and desires as children while growing up with our handicapped sibbling. For me, not learning a different way has resulted in disaster and great losses in my adult life.
I hope in my story parents who are raising these very special handicapped children will remember their other children still have needs in order to grow up whole and balanced.
Till next time. I have so much more to share and am eager to hear from other adult siblings of the handicapped.
Susan

Home On Leave and back

After many months away in the Air Force my Father returned home on leave to find his girlfriend, Goldie, my Mother married to a school teacher. Thinking Frans forgot her, my Mother was influenced by my Grandmother, who did not care for my father because she though my Dad was a "farm boy".
After five years of marriage to the school teacher my mother was very unhappy. She would never have children with him and she wanted children. She filed for divorce, got a little job, and moved away.
My Father got wind of the good news, contacted my Mom and they married.
My Mother wanted healthy children so she planned a strict healthy diet in preparation for having a baby.
My Mother was due with her first child while my Dad was stationed in Japan. The plan was for her to join him in Japan after the baby was born. When my Mother gave birth to my brother and he was born with spina-bifida their plans were changed. My mother was told that if my brother lived through the surgery he would never walk or talk. They told her he would be a vegetable and would only live at most till his teen years. The Air Force brought Dad back to the States to be with Mom and his newborn handicapped son with spina-bifida.
They were stationed at Castle Air Force Base in Atwater, California. He was a Master Sargent.
Surgery was done on Benjamin to close the open spine when he was three months of age. This was before the discovery of the shunt. Ben never had the shunt. My Mother was very dedicated to working with Benjamin.
Next time I will continue with the arrival of Benjamin's sibling---me, Susan

When Our Parents Met

My handicapped brother's name was Benjamin. Our parents, Frans Baker and Goldie Stone, met when they were 16 years old. The year was 1934 and it was love at first sight. My Father told me when he saw my mother for the first time across the room at that dance his thought was, "That's the girl I'm going to Mary". My mother told me once she met my Father she didn't want to go out with anyone else. Mom lived way up in the hills in Clarkston Washington. Dad lived in Lewiston Idaho. My Dad drove his Dad's model "A" car up the long and steep hill every weekend to date my Mother.
They went to movies and dances every weekend she told me and she said they had so much fun together. My Grandmother, my Mother's Mother did not like my Mother's boyfriend, Frans because he was a farm boy. My grandmother wanted someone with more education for her daughter.
Dad joined the Air Force.
Those days were before modern communication technology we have now so months went by with no word from my Father.
I will continue next time and may the blessings of your handicapped sibling add to your life.
I might add here, that along with our unique struggles, we also have unique blessings that come from life with our dear handicapped brother or sister. I want to address those, too at a later date. Please share with us here on this blog some of your blessings because of your sibling.

My Introduction

Hi, my name is Susan and I wanted to start this blog bacause I have not heard anywhere the struggles and needs of the non handicaped siblings addressed or recognized. Nor is there recognition of how our perceptions become warped causing us trouble interacting with people, situations, and relationships in an imbalanced way.
I was the younger sister to my brother who was born with spina-bifida. He walked with cruches and braces when he was young. When he became a teen ager my parents didn't continue to make sure he used his braces any more and his legs atrophied and he lost the use of them and was then confined to a wheel chair for the rest of his life.
We love our handicapped siblings, and we do not begrudge them the extra special attention they needed and deserved, but this blog is for us, the siblings who have needs of our own.
I have a long story and how my life has been affected. I will write it piece by piece.
I was born in 1949 and my brother was two years older than I so he was in my life from the start.
I don't think my father was able to handle his anger and disappointment as he had a business he wanted to have a son  be a part of.  I was a girl and I don't think he was very pleased with that as it seemed he took his anger out on me..
My time is short now, but I will continue next time
Please tell me about your experiences and struggles.

Nondisabled Sibling Reactions

Living with a brother or sister, including one with a disability, can be rewarding, confusing, instructive, and stressful. Siblings of a child with a disabling condition express a range of emotions and responses to that sibling, similar in most ways to the range of emotions experienced toward siblings who have no disability (Powell & Ogle, 1985). Children react toward a sibling with a disability with feelings of love, empathy, pride, guilt, anger, and support; the predominance and prevalence of these reactions have great impact on the levels of stress and coping ability of the sibling with a disability. The positive or negative nature of the relationships between siblings and among family members may be influenced by factors such as these:




the family's resources;





the family's lifestyle;





the family's child-rearing practices;





the kind and severity of the disability;





the number of children in the family;





the age differences between children in the family;





the other stress-producing conditions that exist in the family;





the kinds of coping mechanisms and interaction patterns that exist within the family; and





the kind and quality of the support services available in the community.

Each child's reaction to having a sibling with a disability will vary depending on his or her age and developmental level. The responses and feelings of the nondisabled sibling toward the sibling with a disability are not likely to be static, but rather tend to change over time as the sibling adapts to having a brother or sister with a disability and copes with day-to-day realities. Preschool-aged siblings, for example, may feel confused, afraid, anxious, and angry about a brother or sisterisability or illness. All children are different; the intensity of a child's concerns, needs, and experiences will vary from sibling to sibling, as will a child's reaction to and interpretation of events. The younger the child the more difficult it may be for him or her to understand the situation and to interpret events realistically. Nondisabled siblings may resent the time their parents give to the sibling with a handicap and perceive it as rejection. They may wonder what is wrong with them that their parents love their sister or brother with a disability more. During the early years the nondisabled sibling may mimic the physical or behavioral actions of the child with a disability, or the nondisabled sibling may regress in behavioral development. Later on, he or she may be prone to extremes of behavior such as "acting out" or becoming the "perfect" child.



Elementary school-aged children may feel embarrassed or ashamed as they recognize differences between their sibling and someone else's brother or sister. They may worry about "catching" or developing the problem, and they may feel guilt because they themselves do not have a disability. They may also feel protective and supportive of their sibling, and this may trigger conflicts with peers.



Young adults may have future-oriented concerns. They may wonder what will become of their brother or sister with a disability. They may also be concerned about how the people they socialize with, date, and later marry will accept the brother or sister with a disability. Additional issues faced by young adults may include genetic counseling when planning their own families, and coping with anxiety about future responsibilities for the brother or sister with a disability or illness.

Siblings of Disabled Have Their Own Troubles

When he was growing up in Oregon, Graham Seaton found it virtually impossible to bring children home from school to play.




"I knew there was something wrong with my place," he recalled. "But I didn't know how to explain what that was."



He knew that he would have to tell his friends why they could play only in his bedroom — and only with the door locked. And that, ultimately, he would have to explain what was "wrong" with his older brother Burleigh, who is profoundly autistic.



"I just didn't have the words," he said.



Now 30, Mr. Seaton said he realized that as a child, he felt he could not ask his parents for those words.



"I was so aware I couldn't make a big deal with my family," he said. "My parents already had enough on their hands."



An estimated seven million "typically developing" American children have siblings with disabilities, according to the Arc of the United States, a leading advocacy group for the mentally retarded. Those children face many of the same challenges — and joys — as their parents, but they also face other problems. Some resent the extra demands placed on them at an early age by their disabled siblings, and many feel neglected by their often overburdened parents.



Some children say they fear "catching" their siblings' disabilities. Others may wish that they, too, were disabled, so that they could get all the attention their siblings do. And many suffer embarrassment about their siblings' inappropriate behavior or abnormal appearance, and then feel guilty about it.



These are difficult emotions for children to struggle with, and Don Meyer, director of the Arc's sibling support project, says the needs of siblings like Mr. Seaton are often overlooked. Most assistance organizations and support groups are intended for disabled children themselves or for their parents.



"These brothers and sisters will likely have the longest-lasting relationships of anyone, relationships easily in excess of 65 years," Mr. Meyer said. "They should be remembered at every turn."



Still, many siblings welcome the early maturity and responsibility that come with having a disabled brother or sister. They are often well versed in the details of their siblings' disabilities, and they take pride in being able to explain them in sophisticated ways. For example, Hannah, 16, of Dearborn, Mich., who did not want her last name used out of concerns for her privacy, said she related better to adults than to children her age because of having to cope with her brother Ian's autism.



But that maturity does not inoculate her from embarrassment about Ian's outbursts, particularly during church services.



"Sometimes he'll kind of start making noises, and then sometimes he'll kick and flail his arms, or he'll start rocking and crying," Hannah said. "My mother will take him outside, but it's still, like, okayyyyy. ..."



Suzanne Ripley, who has two sons with cerebral palsy, says that a child's disability can embarrass parents, too, but that embarrassment can be more acute for siblings, especially those in the throes of adolescent conformity. Young siblings are also prone to teasing from other children, who do not have the social inhibitions of adults.



But Ms. Ripley, the director of the National Dissemination Center for Children With Disabilities, based in Washington, notes that adults can often be just as rude.



"People tend to be uncomfortable with anyone who's different, so they look for a second and then look away," Ms. Ripley said. "Imagine how that would make you feel" as a child.



Parents like Ms. Ripley are likely to seek comfort through talking with others about their conflicting emotions. But children may not have the sophistication to do so or they may feel guilty about acknowledging any negative feelings they have.



Hannah, for example, says she loves her 13-year-old brother and feels terrible about her reactions to his outbursts.



"I know it's not his fault and that's the way he is, and so I shouldn't really be embarrassed, but sometimes I am," she said.



But she said she did not discuss those feelings with her parents.



"They'd get that, 'Oh well, you can deal with it' kind of attitude," she said. "I know they would listen, but they would get defensive."



Ally Cirelli, a 9-year-old in Towson, Md., whose sister is developmentally disabled, says the biggest complaint she hears from her peers is that the disabled siblings get all the attention.



Some are so jealous of their siblings that they wish they had their own disability, and the special treatment that comes with it, she said. But Ally, too, avoids talking to her parents about her feelings. And she is quick to backpedal when she does talk about it, insisting that her sister, Katie, 8, does not embarrass her "all that often," and that she is "really fun" to play with.



Mr. Meyer, of the Arc, says children need a place where they can openly discuss these concerns and emotions. To fill this gap, he started the sibling support project, which is based in Seattle and provides information and holds discussion groups for children around the country. In 2005, Mr. Meyer also published "The Sibling Slam Book: What It's Really Like to Have a Brother or Sister With Special Needs," a collection of candid remarks by 80 children.



Mr. Meyer said that when asked about the most embarrassing moment of their lives, few of the children cited anything having to do with their disabled siblings. Instead, most recounted the usual teenage humiliations: problems in romantic relationships or dealing with parents.



And that, Mr. Meyer says, underscores an important point: "When I talk to parents about embarrassment (about disabled siblings), I ask them to keep in mind that it's an age-related condition," he said. "That's the good news, that a lot of that seems to be resolved by even their late teens."



The work of disability advocates and the mainstreaming of children with special needs in schools and in the wider society has fostered more awareness of — and less discomfort with — disabilities.



Ms. Ripley, for her part, says she has noticed a change in public attitudes, especially when she is struggling to maneuver with her sons in public places.



"I'm finding that people are more and more helpful," she said. "That didn't used to happen."

The needs of siblings

Most young siblings experience lack of parental attention, isolation, ignorance about disability, difficulty coping with their experiences, and the financial impact of disability on the family. Many studies on siblings of children with a chronic illness indicate that siblings are at risk for negative psychological effects.[1] When we talk to siblings, parents and professionals, the picture that emerges is that many siblings are struggling to cope with the emotional and practical demands that being a sibling entails. Even though they have these needs that require attention at different stages of their lives, young siblings are often marginalized by their families, society[2] and service providers.




Lack of parental attention



Siblings grow up in a family where, regardless of the age of the sibling, the majority of family resources, parental attention, and professional services are directed, indefinitely, towards another child (i.e. the disabled child). Throughout their lives, siblings' needs come second to that of another person. Many siblings feel that they get a lot less attention from their parents compared to their disabled brother or sister. In the majority of families the attention gap is real, yet even when parents do all they can to share attention out, siblings still feel that they get less attention. As a result, siblings often experience feelings such as intense jealousy, resentment towards their disabled brother or sister, and believe that they are not seen to be as important or special as their brother or sister. Siblings may receive more negative attention from parents than peers in a similar situation.[3] Parental depression and anxiety is prevalent in parents of disabled children[4] and affects the amount and quality of attention parents can provide. Other parents devote huge amounts of time to disability causes which can take their time away from siblings. Significant loss of parental attention will have negative implications for siblings' self esteem, academic performance, and behavioural and emotional development. Siblings themselves can have their own health and learning needs overlooked, as they may not appear significant in comparison to those of the disabled child.



Ignorance about the disability or condition



Siblings rarely receive accurate and age appropriate information about their brother or sister's disability or medical condition. It is common for siblings to lack the basic knowledge and information they need to understand the circumstances in which they find themselves; in the absence of accurate and appropriate information they may develop their own theories to make sense of their situation. This can be the cause of self-blame and guilt and a range of erroneous views that can extend even into adulthood. In situations where disabled children with challenging behaviour hurt siblings or damage their belongings, siblings often believe that this is because the disabled child doesn't like them; this 'taking it personally' will continue until the sibling has a full understanding of the condition and its effect on behaviour. Siblings of children with life limiting conditions are least likely to be well informed about their brother or sister's condition, even though children who are informed about prognosis show less anxiety than those who are not informed[5]



Isolation



Until siblings meet other siblings at sibling groups they often believe that they are the only ones. It is not enough to point out another sibling and say that "He or she also has a brother with autism". Siblings need to hear other children talking about their experiences of family life in order to really know that other people understand what it is like for them. The majority of adult siblings who contact Sibs have an average age of 40 - the stage in their lives when they need support with future care issues. Their sense of relief at being able to talk to another adult sibling is palpable; almost always having their unique experiences and feelings validated for the first time. 40 years is too long to feel you have to cope alone; it is not acceptable for parents of disabled children and should not be acceptable for siblings either. Difficulty with having friends back to their home can limit opportunities for time with peer group outside of school.



Difficulty coping



Siblings can experience challenges that other children do not and they regularly find themselves in situations that can be difficult to manage; situations such as dealing with a brother or sister's challenging behaviour or coping with feeling embarrassed in public when people stare. A study of adolescent siblings of children with severe disabilities found all were struggling to cope with their situation.[6] Many young siblings can give the appearance of coping during childhood and indeed seeming more mature and well-adjusted than peers. At sibling groups however, it often becomes apparent that many coping siblings have internalized their feelings. Siblings, through their close relationship with the disabled child, often experience prejudice, bullying, limited family activities and exclusion from mainstream activities. The extent to which siblings manage to cope can crucially depend on their individual character and resilience. The situation can be exacerbated if the parents/carers themselves have difficulty coping and cannot adequately support the siblings. Many siblings are young carers, providing help with things like personal care, communication, translation at medical appointments, and entertaining their disabled brothers and sisters. About a third of children at young carers' projects in the UK are siblings.[7] Siblings of children with a life limiting condition have to deal with the additional issues of anticipatory grief and bereavement, and often grow up in 'houses of chronic sorrow'.[8]Over a third of Sibs enquiries are from or about siblings of children with autism, a group of siblings who may be at increased risk of negative impact[9] due to the nature of the disability and its effect on family dynamics and family stress levels.[10]



Financial impact



Siblings are more likely than their peer group to be raised within a family that experiences poverty. 93% of families of disabled children in the UK are struggling financially.[11] Family expenditure to meet the needs of the disabled child means that fewer resources are available for the needs of siblings.



Positive aspects of being a sibling



Being the sibling of a disabled child can also bring positives, such as increased maturity, increased tolerance of others and enhanced communication skills. However, these skills and attributes may be acquired at a cost of the above to siblings.



More research is needed



There is a need for further research on the needs of young siblings who currently have a disabled brother or sister. The variables that affect psychological adjustment in siblings are wide ranging – such as the parents' ability to cope, the sibling's temperament, the nature of the disability, the family's communication style, parental depression, amount of caregiving required for the disabled child, and the amount of care being provided by siblings. From our experience it would seem that being a sibling today is harder now than it was 20 or even 10 years ago due to the increased numbers of disabled children with complex medical needs, the diminished availability of extended family for support, the inadequacy of services for families of disabled children, and the fact that the majority of siblings are the only sibling in the family.







1. Rossiter, L and Sharpe, D (2002), Siblings of children with a chronic illness: A meta analysis, Journal of Pediatric Psychology

2.Burke, Burke, P (2004), Brothers and Sisters of Disabled Children, Jessica Kingsley Publishers Ltd

3.Lobato, D and others, (1991), Preschool Siblings of Handicapped Children: Interactions with Mothers, Brothers, and Sisters.

4.Veisson, M (1999), Depression symptoms and emotional states in parents of disabled and non-disabled children, Social Behaviour and Personality.

5.Waechter, cited in Walker C. L, (1993), Sibling bereavement and grief responses, Journal of Pediatric Nursing.

6.Opperman, S and Alant E, (2003), The coping responses of the adolescent siblings of children with severe disabilities, Disability & Rehabilitation.

7.Dearden, C and Becker, S (2004),Young Carers in the UK. The 2004 Report. London, Carers UK.

8.Bluebond-Langner, M (1995), The Worlds of Dying Children and their Well Siblings.

9.Macks, R.J and Reeve R. E (2007)The Adjustment of Non-Disabled Siblings of Children with Autism, Journal of Autism and Developmental Disorders.

10.Fisman S et al. (1996). Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. J Am Acad Child Adolesc Psychiatry.

11.Harrison, J and Woolley, M (2004), Debt and Disability: The impact of debt on families with disabled children(York: Contact a Family & Family Fund).