What are the determinants of cohesion or breakdown of families having members with disabilities of all ages?

Beata Borowska-Beszta @Beata-Borowska-Beszta

04 October 2014 59 4K Report

Families in which a child is born with a disability or disability manifested itself and diagnosed after some time (as in the case of Rett Syndrome, autism, early psychosis) - experience the shock, grief and mourning of the idealized image of a child. They experience also anger, aggression, burdens and depression.

They are seeking sources of the birth of a child with a disability, and blame those responsible for this, in their opinions. Sometimes the spouses are blaming each other. They go through phases of adaptation to the child's disability in the family until the approval phase. The entire adaptation process takes sometimes many years with no guarantee, that family will cope with all phases sucessfully.

Another situation, filled with families' dilemmas and burdens are present while diagnosed various disabilities, acquired disabilities or mental disorders manifested, through adolescence or every other adulthood phases.

What in your opinions determines the consistency and stability of parental or spouses' relationships and what determines the breakdown of the families having member with disability in your country ? I'm completely aware of cultural differences in this issue and thread.

Please, share your knowledge, experiences, opinions or visualisations.

Sribas Goswami

For parents, having a disabled child may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem. It may divert attention from other aspects of family functioning. The out-of-pocket costs of medical care and other services may be enormous. All of these potential effects could have repercussions for the quality of the relationship between the parents, their living arrangements, and future relationships and family structure. Having a disabled child may also affect parents' allocation of time and financial resources to their healthy and unhealthy children, their parenting practices, their expectations of healthy siblings in terms of achievement, responsibility, and short- and long-term contributions to the household, and the siblings' health and development. Finally, having a disabled child in the family may affect the contributions of time and financial resources on the part of the child's grandparents or other extended family members, the relationships of those individuals to the core family, and the financial, physical, and emotional well-being of those family members. All of these potential effects on families have implications for the health and well-being of disabled children.

Tom Adejoh

Disability, whether of a newly born child or to an adult member of the family is akin to a curse (or spell) in my environment. An enemy is considered the cause. And the family's initial reaction is to stand together and thwart the schemings of their common enemy. The family are united behind the victim and show utmost concern and care.

Our culture has as a basic ingredient, the strong tie of extended family, so more members of the family join the bandwagon to show care and the victim gets a lot of relief and gradually forgets their condition.

The victims are exempted from normal hustle and bustle and are just expected to eat and sleep until a miracle comes...from God, hospital or medicine man.

Families are stressed up as a result of attention to the disabled yes, but the stress becomes a normal way of life and it is not considered stress after a short period of time. The only time the stress remains a pain is if the disability is the type that subjects the victim to bouts of pain. And in this case, rather than stress anyone up the family weeps together.

Disabilities do not break relationship or bond here. Only marital infidelity is the strongest bond breaker. We are positive -minded and our slogan is 'when there is life, there is hope.'

When some disabled get some window of opportunity they learn handicraft and sit in one place to render services to the community from which they get paid. They hardly ever get married though and they don't bother anyway.

In conclusion, disability unites couples and families against an imaginary witch or foe, it doesn't break bonds.

Thank you.

Beata Borowska-Beszta

Dear @Sribas and @Thomas,

Thak you for excellent comments. I found there many interesting aspects I need to think deeper about and then probably refer with more specific questions.

Antoinette Errante

Hello Beata, the impact of the birth of a child with a disability will very much depend. I think on two factors that are probably mutually constitutive: (1)The meaning attributed to the birth of the child and to the disability in question; and (2)parents' coping mechanisms as individuals and as a couple. I think those are the factors that influence whether this life event will draw parents and the family closer or tear it apart. All of the stressors my esteemed colleagues mention in previous posts are all true and highly probable in the US. It may be that at some point, even a couple's excellent coping skills may be overwhelmed but people's responses to stressors is so variable, it's hard to say, although I am sure there may be some statistical models that might be able to account for the probably of divorce depending upon the number of stressors. If the family has other children, those children will look to the parents to make sense of and meaning of the birth of the new sibling. Is the child considered a blessing? Some kind of punishment? A catastrophe? A burden? All of these factors have to do with meaning making. In the US, a number of organizations have developed workshops for the neurotypical siblings of people with disability. These programs often work with parents as well, helping them to understand the experiences of other children in the family and often also teaching them how to encourage play and socialization among siblings. There is an entire generation here in the US who never knew or learned only late in life they had a sibling with a disability at all because their parents institutionalized the infant and essentially pretended the child was never born. Many of those parents stayed together, but I wonder if this really constitutes a marital "success story".....

Beata Borowska-Beszta

Dear All, thank you for valuable comments.

It took me time to respond and analyze your thoughts.

Dear @Sribas, Thank you for excellent and comprehensive description of socio-economic derminants of possible breakdowns or turning points in cohesion of families in India. I wonder how is interpreted such concept as - being parent of child/youngster/adults with disability/mental disorder ? In Poland there is popular parental-family based support model where mothers became 24h carers and fathers are employed and support income. However, it depends on levels of disability. How it is in India ?

Dear @Thomas, Thank you for description of origins of disabilities from Nigerian parents points of view. Very interesting is role and victim position as effect of whitchcraft. From victim is expected recovery achieved in different ways you indicated. I noticed from your comment, that such stress and shocks does not break family ties as you wrote "disability unites couples and families against an imaginary witch or foe, it doesn't break bonds." I'm very interested how families cope and organize themselves against whitch or foe ?

Dear @Ahed, thank you for your voice of two cases, where all income covers medical expenses. This may cause huge everyday problems. I wonder what you mean by writing - "there is no happiness in such families".Is it connected directly with poverty or economic problems, or maybe you meant broader ? Do families (spouses) stay together or get separated ? In one of Toruń (my city) preeschools for autistic children - 2/3 are raised by single mothers, 1/3 have both parents living in marriages or partnerships. Autism was too difficult to cope for Polish dads, and they left. How cope familites in Jordan ?

Dear @Antoinette, thank you for analysis of determinants. Especially I appreciate the dilemmas of siblings you indicated. I'm aware that social acceptance and support for parents and families is in contemporary US very good and much better than in Poland. However institutionalizations and it's effects are similar.

I have in mind an interview with Polish female lawyer who changed professional entire life to follow and take care for own son in institution. The son was born and diagnosed in 80's as autistic with severe intellectual disability. His mother left her law career and employed herself in nursing home to be close to son. The most dramatic moment of this story was associated with her husband also lawyer - the judge, who after diagnosis gave the wife choice: "him or me". The female lawyer spent the days with her son and nights at home with her husband. Very strange compromise, but real. She took also professional college education in care.

Dear @Antoinette, thank you again for highlighting the issue of children who were excluded from family ties and forgotten in institutions. I even suppose that was kind of taboo area present in families. This issue seems questionable also to me - how they could live "sucessful story" in marital life after excluding own child from ties ? Was it psychologically possible at all ?

Ierardi Enzo

I think that the familial cohesion in the case of a member with disabilities must be strongly helped by the Institutions on many aspects: funds, no barrier, psychological supprt, educational training for familial. And finally also by the positive support that friends may offer only by a smile or an apprpriate word ...

Raveendran Iyengar

I had worked as consultant with the Government of India in implementing a medical insurance programme for such Children in 2007 and based on my personal experience I would like to state following:

Though I cannot still specify the determinants of cohesion or breakdown, I have broadly categorized the areas in which these determinants lay

I have noticed issues on acceptance , adaptation and allocation whenever a child is born with a disability.

Acceptance: Accepting that they have a child with disability is the most difficult thing for an Indian parent. They may for a few months or few years live in denial before taking action, which in some cases aggravates the condition of the child. Where a timely intervention could have prevented further slide, the parents try alternative methods because they believe the child to be normal and the symptoms are another ailments. There is also a social stigma attached in some cultures as the mother becomes the target for having given birth to such child. I have seen cases where the male members have abandoned both the mother and child. In the urban areas, where the parents are by and large educated , they come around quickly and start adjusting their life .

Adaptation : Urban parents are more adaptable than rural parents. There are now special schools which trains these kids and hospitals with special facilities to treat these kids. Though expensive these institutions provide yeomen services and often are supported by government funding and private donations. However, rural India still lacks rudimentary facilities and such absence of facilities slows down the adaptation process for rural parents.

Allocation : This is the most painful for the parents. Where the child's care or cure will take up most of the household income, there is more likelihood of breakdown. The health care costs for such kids are very high and families find it extremely difficult to meet them. That's when the blame game begins. Government of India runs many intervention programme like, funding , scholarship, medical insurance ( which I was able to make contribution ) etc. But there is still some way to go.

Tom Adejoh

Dear Beata, let me throw more light on your little query to my earlier post where you specifically re-quoted me as follows:

"disability unites couples and families against an imaginary witch or foe, it doesn't break bonds." I'm very interested how families cope and organize themselves against whitch or foe?

One interesting adaptation comes from neighbours; they have to be at their best behaviour so as not to be suspected as the foe. Neighbours become extra nice and avoid quarrels with the family of the victim, not necessarily out of love but to avoid being tarred with the badge of a witch or enemy. In our society, the rule of law is still developing. Occasionally, people resort to jungle justice and suspicion of witchcraft is a usual route for such. The evidences for the suspicion are the numerous indiscretions with the family of the victims.

The family on their own pray more. And it is the kind of prayer we call 'warfare.' That is you invoke God to deal with your secret tormentors or attackers. The hope that the prayers will be answered keeps their hope alive and gives all a positive mental attitude. There are pastors who also pray and comfort the family, making their seeming disadvantage not to be an issue.

Really, we are a religious people and we absorb a lot of shock because of our religious orientation.

We don't have hospitals for the disabled so each family looks after their own. But really, our disabled are industrious except the blind who go about begging. For example those afflicted with polio use their hands to earn money legitimately as cobblers or artificers. Some work in government offices. Scoliosis and lordosis find work if they go to school, and most often they do go to school.

Other kinds of the disabled are carried about by family members from place to place begging for arms. It is funny but interesting that some blind, deaf, dumb and lame (if we loosely accept them as disabled) men are married with children in Nigeria. They are even more comfortable than some able folks because they receive arms from the public.

The only kind of the disabled that are neglected-if we can call them that- are the 'mad' ones. That is, those who have psychiatric problems and have lost touch with reality. They on their own abandon home and roam about the street haggard, hungry and fearsome. That is one area we we have not coped well and the families appear helpless. However, the rich send their own 'mad' to Psychiatric hospitals; it is the 'mad' of the poor that roam the streets- cursed by the gods.

Mantri Venkata Raghu Ram

Hi, let me begin with a quote.

Barbara Kolucki: "Every infant, disabled or not, can benefit from nurturing and stimulation of their senses. The more a child is spoken to, sung to, read to, danced with , exercised, played with, encouraged to explore in a safe environment, the more the brain and body will develop." (RI/UNICEF One in Ten, Early Intervention for Children with Disabilities,1999)

India is just learning how to implement national health programs effectively. Disability is regarded as a worse social stigma by people who consider a female child birth as a social blemish.

Look at USA - 1.3 million women receive insufficient prenatal care each year. The Alan Guttmacher Institute, a reproductive health research organization, reports that 16 percent of women who give birth in the United States receive inadequate prenatal care. Because focus is more on post-natal health. Are the husbands of these women given any counselling about how to treat a woman during pregnancy? If this is the case with USA which we see as a reference for modern academic research, what about a country like INdia?

India is predominantly patriarchal and patrilineal. When a woman cannot conceive, the husband feels it an insult to go to the doctor for preliminary investigations. The woman is branded as barren and inmost cases a second marriage (illegal) is planned for the male. Then, if a child is born with a disability, who do you think is held responsible. NOW, unlike other countries, physical punishment of kids is common in India in the name of discipline. These disabled children are subjected to even tougher disciplinary measures. They are often deprived of their fundamental rights. Very few parents come out of the cauldron and think about doing something for the disabled. There is some sort of secrecy about the disability and the government is doing its might by encouraging the disabled to come into the mainstream by offering sops, incentive and quotas of various kinds. But as you said, WHO IS LOOKING AT WHAT IS HAPPENING AT HOME? I think we'll have some excellent feedback for this kind of question from our friends (like the earlier one on disability). Unfortunately, statistical information on this topic is very difficult to obtain. Stability of a "spousal" relation in India depends on "disability" too.

Beata Borowska-Beszta

Dear @Thomas, @Mantri and @Francesca, please give me a little bit more time to think over and respod. I read with all my attention your excellent ideas, remarks, thoughts, visualizations and just need to think about all important issues. I greatly appreciate your contribition and voices in discussion. Now I'm just back home from university after classes this fall semester. Here is 5:47 PM my time.

Gloriam Guenzburger

My answer is completely non technical. However, here's what I have observed helps: the material resources to deal not only with the treatment of the disability but to be able not to stress with material need within the context of disability (first step on Maslow's hierarchy of needs. It becomes even more crucial within the context of disability. We in Brasil say: "Money does not buy happiness but at least one suffers in comfort.), educational level, which will help understand the whys and hows of the disability and will provide the intellectual resources to address it and its consequences with confidence. A good and compatible relationship between the couple will be very helpful. And, what I believe is the most CRUCIAL: an emotional and safety network of relatives and friends and to step in when the immediate family needs a break. I guess I pretty much covered at least three steps of Maslow's.

Beata Borowska-Beszta

Dear All, I would like to excuse for delays in responding to your comments. Fall semester started in Poland with October and professional urgent duties called here metaphorically - for yesterday.

Dear @Thomas, very interesting illustration of situation with neighbors after the birth or diagnosis of disability. It's interesting, because even though the neighbors fear of accusations of witchcraft they are polite and helpful. This is a ground of community support needed in crises. Having extra nice neighbors while family crisis associated with disability is....supportive. So, as you wrote people with physical dysfunctions find a place in the communities. The most difficult situation is for the persons with mental disorders, especially poor people. Thank you for the Nigerian landscape of life of people with disabilities and insight into the situation of families.

Dear @Mantri,

You indicated in a comment a number of important cultural issues as planning another marriage for man. Thank you for pointing out the situation of Women-mothers of children with impairments and disabilities. My guess is that you wanted to point out that women are blamed for the birth of a child with a disability. The severity of blamed (explicitly or tacitly) women I know from research reports, literature and field experiences in Poland, until the late 80's. After onset of the 90's brought a lot of action and social activities, eg. "Childbirth with Dignity", where much attention was paid to conditions of childbirth and reductions to potential health conditions associated with disabilities, connected with birth and after birth early care. Such programmes, highlighted also different relationship between physicians and females giving births. Lot of attention was paid also to the way of informing of the disability in child, which since then invoved not only mother presence but father of child and even more family members - their parents. Such new ways of cooperation reduced significantly iatrogenic factors anf trauma, made by physicians, and nursing staff. Their shameful ways of providing informations, was remembered by mothers for even 20 years. "Please, take your monkey" - cited by A. Wojciechowski (2001) and reported by mother of child with Down syndrome born in 70's in Poland. This is sad, that physical punishment is present and deeper towards children with disabilities, who have own limited potential but need to be accepted and supported. We also notice in Poland maltreatments of children, which are loudly discussed in our media. Thank you very much for real picture and impressions from India.

Dear @Francesca, Thank you for the analysis and the discussion. Your comment reminds me of the technique of stream of consciousness or collage painting. Your critical voice concerns: the concept of sources of disability, the situation of oppression from a society of people with disabilities, worship carnality - what you marked also in the accompanying photographs. You are speaking also of giving and taking care dimensions and problems. I agree, is a difficult issue, especially referring to the care of people with mental illnesses, or degenerative health conditions as dementias, including Alzheimer's disease or cancer. Is it does not define us as a people? - Care and support for those who are sick and disabled? - The world seems to forget about it and especially P. Singer, don't you think?

Dear @Francesca, I completely agree with your statement - "Why People are afraid of Diseases and so on". I'm following and observing for years this problem in Poland too. I have to say that even at RG, questions about disability, which I put, not tend to interest lot of people. On the other hand, this is hard to imagine, that the particular person had no contact at all with disability even on the streets, in their families, in their lifetime. I will say even more, for years I'm teachin university courses and watching that special education students, with a huge desire are listing and learning about the successes of people with disabilities, a variety of effective therapies, support, but do not want the same to get to know the background or the realities, saturated with failures and sometime life struggles, even in historical aspects. This is a sign of modern times toward special education too.

About mothers' rejection of a newborn child with disabilities. This is very complicated issue and depends on support of husband (partner, boyfriend) and family in the same measure, as from early intervention day facilities and specialists. I know from specialistic literature (M. Kościelska, I. Obuchowska, H. Olechnowicz, M. Chodkowska, E.Manterys-Zakrzewska, etc.) and from own field experience, that mothers' love can evolve in various ways. Mothers' love is evolving, but they need a lot support from spouse (partner). Their love can have negative dimensions as: symbiotic love (dominated completely child self, even to adulthood), seeming love (internal rejection and mixed messages), fighting love (fighting with society - the child as flag, mother as flag bearer), etc. There can also be positive aspected love, associated with acceptation of limited abilities of child and his/her and own roles.

Dear @Francesca, I agree - siblings are developing similar to their parents' attitudes towards disability. Sibllings are sometimes a gatekeepers of families with children (different ages) with disabilities. That what I noticted after analyzing the part of huge data from families. Thank you for your comments and valuable thoughts. Please see my other threads too.

Beata Borowska-Beszta

Dear @Gloriam,

Thank you for your voice, reference to Maslow and his pyramid of needs. I agree, they are crucial for families too. You highlighted basic needs (material) associated with biological probably nutrition, supporting physiological needs. You also shared ineresting saying :"Money does not buy happiness but at least one suffers in comfort." - This makes me think of the novel "Secret Garden" by Frances Hodgson Burnett, and the boy with physical disabilities raised by very rich uncle.

I agree, with your point, that income and education are crucial issues in supporting cohesion of families with members with disability. Families having members with disabilities have a lot of extra expenses, associated with the rehabilitation, medical care, specialist equipment. Sometimes they live on the edge of poverty, so is in Poland too.

Gloriam Guenzburger

@ Beata, the material needs are the base. The education level also helps on the psychological because it gives the family the ability to look for information, to use it wisely and to have the self confidence to face the medical and legal authorities on an equal footing. But, most importantly, IMHO, is an available SUPPORT SYSTEM of family and friends, because taking care of a person of disabilities is a full time job, and NOBODY, no matter how loving, can be on the job 24/7.

On a secondary note, in the Secret Garden, one of my favorite books, the girl cousin goes to live with her rich uncle, who has a son, who everybody thinks has a disability. Miss Mary Contrary goes on to show that the FAMILY had an EMOTIONAL disability and, in her very prickly way, Mary actually helps them heal. ;-D

Beata Borowska-Beszta

Dear Gloriam,

Right about Miss Mary :-)

Dick Sobsey

As a researcher, I've been part of several studies that look at the effects of having a child with a disability on families. Asa father, we have a 24-year-old son with severe and multiple disabilities. There are a few points that I would like to add this discussion. We have found that more parents report that having a child with a disability benefits the family and strengthen family cohesion than report that it has harmed the family. Nevertheless, some families do report the opposite effect. For example in one study, we found that 52% of parents said it strengthened their family, 26% said it had negative effects on their family, and the remainder said it neither strengthened or weakened their family.

I think it is important to distinguish between intrafamilial and extrafamilial factors that influence these outcomes. There may be lots of factors at both levels, but I will mention a few.

Within the family, the first issue is the existing family function before the child with a disability enters the family. When families are stable and well functioning, they have a big headstart. When families are already dysfuntional, having a child with a disability will often tip the balance to breaking up the family or more severe family dysfunction. In these cases, the child with a disability may appear to be the cause of the problem but may actually only be a triggering factor that exposes pre-existing problems. Another issue that has previously been mentioned is blame, if one parent blames the other, or as sometimes happens they blame each other, it certainly contributes to bad outcomes. Finally, appraisal is important, more positive attitudes about the child and about the family's ability to handle the situation lead to better family outcomes.

Outside the family, obviously supports and availability of services can help, but in some cases professional and informal support actually can harm family unity. Misguided professionals often communicate their own biases telling families that having a child with a disability harms marriages, hurts the nondisabled children, and leads to unmanageable stress. Parents especially during their early adjustment period are often influenced to take on these catastrophic appraisals that lead them to negative outcomes. When professionals, friends, and family members encourage parental attachment, express confidence in families to manage challenges, and acknowledge the positive effects of good parenting, family outcomes are much better.

Kausar, S., Jevne, R., & Sobsey, D. (2003). Hope in families of children with developmental disabilities. Journal on Developmental Disabilities, 10(1), 35-46.

McConnell, D., Breitkreuz, R., Uditsky, B., Sobsey, D., Rempel, G., Savage, A., & Parakkal, A. (2013). Family life: Children with Disabilities and the Fabric of Everyday Life. Edmonton: University of Alberta.

Scorgie, K., & Sobsey, D. (2000). Transformational outcomes associated with parenting children with disabilities. Mental Retardation, 38(3), 195-206.

Scorgie, K., Wilgosh, L., & Sobsey, D. (2004). Transformational outcomes and effective life management strategies in parents of children with autism. Exceptionality Education Canada, 14(1), 43-61.

Scorgie, K, Wilgosh, L., Sobsey, D. & McDonald, J. (2001) Parent life management and transformational outcomes When a child has Down Syndrome, International Journal of Special Education, 16(2), 57-68.

Sobsey, D. (2004). Marital stability and marital satisfaction in families of children with disabilities: Chicken or egg? Developmental Disabilities Bulletin, 32(1), 62-83.

Beata Borowska-Beszta

Dear @Dick,

Thank you for emic and etic interpretation of the aspects of cohesions and breakdowns in Canadian families. I agree with many your points, and would only add that, better cope and adapt families who know the diagnosis and the particular name of the syndrome. Far more difficult is to cope parents with children and adolescents with severe and multiple disabilities or autism I have in mind Polish research by E. Pisula (2012, 2014). Thank you for references :-)

Dick Sobsey

Dear Beata, at least some of our findings regarding positive effects on families have been replicated in a few different countries, but I agree that cultural attitudes play a role in the appraisals that are supported by the cultures in which people live. I think your point about knowing what caused the syndrome is a good one and can help in many ways, but can also be a double edged sword. In our case, our son was born in 1990 with severe and multiple disabilities and no specific diagnosis. There was no technology to diagnose his syndrome until the first case of MECP2 Duplication Syndrome was diagnosed in 2005 and we got a diagnosis for our son when he was 18 years old a few years later. This actually proved very helpful because it allowed us to be in touch with other families dealing with the same syndrome. We have met about 40 of them and have contact with about 300 families with kids with the same syndrome, even though there have probably only been about 2000 cases diagnosed world wide. (We heard from the first Polish family in our circle of contacts just a few months ago. The internet has been great for allowing parent of children with rare disorders to support each other even when they are separated by thousands of Kilometres) This has been a great source of practical and emotional support. The negative side of getting a diagnosis for some families is that in some situations it adds to parents blaming themselves or each other. Of course, parents should not blame themselves, but sometimes they do. For example, I have seen mothers who are carriers of X-linked disorders interpret this as feeling that they are at fault.

Gloriam Guenzburger

@Dick "I have seen mothers who are carriers of X-linked disorders interpret this as feeling that they are at fault. "

This truly leaves me scratching my head. How can one feel guilty for passing a genetic disorder that they had no knowledge of?? I can understand if one KNEW and played genetic Russian roulette. I do find that irresponsible, and, if I've taken such chance with somebody else's life I, MYSELF, would feel guilty. But, and that is where good education goes a long way: if one had no idea, if your environment never even hinted at something like that, or if you never had the kind of privileged education those of us had to be aware of such possibilities and have the understanding of their consequences, how on Earth would they be able to predict such a thing? It is like feeling guilty for lightening striking...

Dick Sobsey

Gloriam, I absolutely agree that mothers who are carriers should not feel guilty nor should mothers and fathers who are both carriers of autosomal defects. Nevertheless, I have had many mothers tell me that they felt guilty and like it was their fault their child was suffering. This is not only sad for them, but it actually distracts them from their present challenges and gets in the way of being the best parent that they can be. On the positive side, most of the mothers I have known who expressed this feeling of guilt only seemed to be overwhelmed briefly and then eventually found that they could move past these feelings. I don't claim to understand why some mothers struggle with this, but I think in some cases parents are looking for someone to blame and then when they hear that they gave their child the gene, they feel they have to blame themselves. Sometimes it may also may result from other people (such as their spouse) blaming them. Sometimes it may stem simply from being too focused on the past rather than living in the present and facing the future (which looks scary and painful). Sadly religion sometimes contributes to self-blame. Some religions preach that if you have a good relationship with God or live a sinless life, God won't allow anything bad to happen to you. This is an attractive premise when everything is going great in your life. It's easy to think that everything good that happens to us is because we deserve it. However, this kind of belief sets people up to think any misfortune we face is somehow our fault. So for some mom's the news that the gene came from them just confirms this relationship. I don't really know why some moms feel like it is their fault, but I have had dozens of mom's tell me that they do.

Gloriam Guenzburger

@Dick "Some religions preach that if you have a good relationship with God or live a sinless life, God won't allow anything bad to happen to you."

Those of us of a more engineering and physics persuasion have a more sanguine view. Remember Einstein: "God does not play dice." Well, ever since Heisenberg's uncertainty principle, it would seem that IT does indeed. Even the Almighty have left room for some surprises, good or bad. Facetious it maybe, but it does make life easier, in my view. ;-D

Dick Sobsey

Gloriam, Whether it's quantum indeterminacy or it is "God" acting with some plan that only she or he can understand, there is no shortage of suffering among people who are moral or religious or both. It is attractive to think we control our own destiny when we are winning the lottery but a lot harder to believe in internal of locus of control when a tornado hits.

Beata Borowska-Beszta

Dear All, thank you again for magnificent support. I'm very glad that discussion went under surface of the thread and reveals layers of interesting research issues.

Dear @Francesca, of course you wrote about parental and spouses issues. My thinking of issues went slightly ahead. I completely agree with your statement: "People, at School and within our Societies, should be [more] aware of the Factors that turn a healthy Person into ad invalid Person". In this context disability (varoius levels) is inevitable in life cycle, and this is crucial issue to be learned formally or informally.

Dear @Dick, I always appreciate the first-hand data, as your parental and scientific as well. My undergraduate, graduate students read specialist literature written by scientist (clinical psychologists, sociologists) who are mothers of adults with intellectual disabilities. I'm aware, that authors from the field give valuable and more unique dimension and more personalistic approaches, what I read in your comments too.

Dear @Dick, I agree - some findings are replicable but some are dependent of the cultural background, governmental support, disability associations' public movements etc. Canada as well as US, are much more advanced in preparing the proper cultural and social ground for many years of social acceptance of disabilities as phenomena, families and support for them. The very fact that you met with 300 people in search of support is significant. In my opinion (I have lived over two years in US in late 80's, collecting data for master's thesis) the gap between North American and Polish realities in the socio-cultural-economic conditions I would define for about 40 years. This is related also to independence and leaving the Iron Curtain in 1989 we had since 1945 - the end of WWII. Since then there has been happen a positive changes. Social movements and organization of parents that have taken place in North America in the early 70's - in Poland are present now in 2013 and 2014. Parents now are enough organized (not bounded to own homes with own suffering according to trauma) and picket the buildings of the government for more resources for living and greater benefits care for children of different ages. So I think cultural and social conditions of the country have an impact on the situation of families and their consistency or breakdown.

Dear @Dick reading you message about parents who blame other and blame themselves, I suppose these as phenomena are present very often and have various intensification. Please let me mention my personal situation. My daughter Cornelia, who is now 14-teen, was born with heterochromia and was diagnosed as dislexic child at age 10. Her eyes are now almost the same color - brown, but after birth I saw the baby girl with light blue and one dark brown eye. If I blamed myself ? I was aware and happy, that I live in present times not in medieval England of France for ex. Maybe a little bit more I blamed myself for her developmental dislexia, what I connected with two loops of the umbilical cord around the neck of my daughter during pregnancy with her and child delivery. I got support from my husband. Cornelia is now succesfull at school, artistically gifted. Her limitations make troubles in history, geography and languages. No problems in math. Fortunately she has longer time to write school exams. Some may say - this is only dislexia, learning difficulty, so what is all about ? I intended to mention, that the blame was also present in my life too, and finally after diagnosis I went out of the square of her learning difficulties, seeing my daughter through her potential. I think, that blame, is also historically grounded and needs much attention and other families and community support.

Dear @Gloriam, thank you for support and valuable thoughts :-)

Gloriam Guenzburger

On the matter of dyslexia, in particular the reading difficulties in which p and q and d and b "keep flipping" (to quote a dyslexic student I had), I have a couple of suggestions:

1) the q and p and d and b "keep flipping" because I think the dyslexic person stores in memory that they are just a ball with a stick. So they never quite know to which DIRECTION the ball and the stick are. I suspect my daughter is borderline dyslexic because when she was first learning how to read, she complained of the same trouble. What I did was to write donut (with the d in front as a man with a round and big tummy, because he ate many donuts), bee (with the b drawn as a bee with a big butt. Double reinforcement), pack, (the p is a man carrying a pack), quack (the q is a duck). My daughter NEVER forgot those and the letters stopped "flipping". Years later, did the same with a student of mine. He was floored! It was like a light bulb came out.

2 - If you are a Harry Potter fan, you know Luna Lovegood reads her books upside down. My daughter tried that for a while and said that it helped. Her words "It slows me down and I can read better." Recommended that to another student of mine and he also reported being able to read better.

So a few odd ball strategies. See if they help with the reading.

Francois Sebastien Bouali

Dear Beata,

I think the notion of the family has become a bit redundant. a solid cohesive family has become the exception rather than the norm. And this phenomenon is world wide thanks to the macdonalization of the internet revolution. Seen from this perspective, I think a disabled child may a blessing in disguise. The disability of the child becomes the unbreakable bond between parents in many cases. But this responsibility bond that is stronger than the marriage itself is getting loose unfortunately. I see this in the west where the governmental/private institutions has stepped in to take care of the disabled child. Because of our selfishness ( self-fulfillment principle) I do not see why the marriage scenario does not repeat itself.

To sum up, the key word here is responsibility-how do modern societies reinstall it in behavior of its citizens.

Beata Borowska-Beszta

Dear @Gloriam, thank you for valuable suggestions. Yes, our children need original attitudes from us. My Cornelia has problems with remembering historical facts in association with proper year, so medievel ages she can write as 1941 not 1419. This is amazing that, no problem accure in math. When she was younger she had more troubles in reading but I never exerted pressure on her to make her not discourage reading. Her technique is not perfect and probably never be. I noticed that Corelia likes comic books when she has started reading. Until now she buys a lot and reads comics.

Dear @Brahim, you highlighted many sensitive issues. It is difficult to agree that the family becomes redundant, although a family crisis is clearly visible in a global sense, forced by economic conditions. I notice of course your critical tone of voice.

Reading your conclusion, I think of the ways societies can reinstall such value as responsibility. It can be through comprehensively meant generational families support. These values are created naturally in generational families but were sometimes lost. Another important step would be significant reduction the media brainwashing, which are reducing values such as solidarity, support, selflessness and degrading human life to consumption patterns. I suppose, my suggestion is rather wish than the way, because pop cultures with their values are rather stable part in cultures.

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