Should mentally challenged kids be alienated from their families?
68This article is based on a Non-Fiction: From the desk of a daughter (link given)
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Writing about people, relationships and complexities of human mind, has been a passion for me, for ages. I believe that our mind is a store house of energy, both negative and positive. We often live our lives amidst an unending conflict between these
Rejoice! The baby is born.
Those parents, who might have already had the horrifying experience of being confronted in their past, with that one single life changing moment, when it had felt like being hit by a bolt of lightning, would better understand the misery and helplessness associated with the crude reality of giving birth to, and nurturing, a mentally challenged baby. The journey of such grief stricken parents, generally, starts with an irreconcilable shock and uncontrolled tears but gradually ends in acceptance, mitigation and salvaging whatever is left. Did I say salvaging? Some parents get so much blinded with grief and mental chaos that they tend to (unintentionally) ignore the ‘salvaging’ part by neglecting their other children. What happens to the siblings in a house infested with insanity, violence, screams, depression and frenzy? The parents are, no doubt, the worst sufferers but are the siblings any less affected?
Let me share a story (true story) with you and you decide for yourself, the best recourse in such situations. This is a story of a woman (Alisha) who spent her entire childhood and youth witnessing the aggression and violence of her mentally challenged sister (Nancy). I had a long talk with her once but towards the end of the conversation, I was completely at a loss; I wasn’t able to identify someone who could be held responsible for her predicament. Assessing the state of affairs from where she stood, my heart went out to her. It seemed that even after being married for a very long time, the memories of her unhealthy childhood had left deep rooted scars on her psyche. She looked at me with those empty eyes and started off by saying, “we do certain things which seem so right at a given point of time and later keep wishing for the rest of our lives that we hadn’t.”
Without stepping into an arena of passing a verdict, let me put down the excerpt (from our conversation) for your perusal and we’ll proceed from thereon. At this juncture, I wouldn’t like to miss an opportunity to confess that her life story inspired me to an extent that I compiled her eye-opening experiences in my Novel, ‘From the desk of a daughter’ (Link given above). Let’s move further. Here's what Alisha had to say.
Lonely childhood of a sibling
From the eyes of a sibling…
“My parents had turned every stone possible with a hope to see Nancy (mentally challenged sister) at least approach normalcy but over the years all their hopes had died down. Her violent behavior aggravated as she grew up. She would not let anyone enter our house and have a normal conversation with my parents; I never recollect having been able to talk to my mother or father for more than a few seconds, at any given point of time. She would start crying and shouting on the top of her voice whenever she saw any one of us talking to each other or to any visitor, for that matter. A strange behavior for which no doctor had an answer! It used to be a source of huge embarrassment for my parents. The worst thing she did to us was that we lost contact with the outside world; no visitors allowed.
We could not even put Nancy in some special school as there were no such schools in the city we lived in. Very soon I realized that there was no social life left for us. More than any of us this proved detrimental to my father’s career as his profession needed him to be socially active. Who doesn’t know that one cannot survive in journalism by confining himself to his house for most of the time! It was like a fish out of water twitching on dry earth and still hoping to live. I saw him, struggling, barely being able to support his family and always under a constant fear of losing his job. He denied many lucrative work opportunities which could have proved a boon for his career, just for the reason that he could not travel out of the city, leaving his wife all alone to take care of Nancy, who was a total liability and needed one person round the clock to take care of her needs. The doctors had told my parents soon after Nancy’s birth that she could never be a normal person and that it would be in the best interest of the family if the child was alienated and put in some kind of a facility so that the other members wouldn’t get affected by her abnormal behavior. I guess my father never felt strong enough to let his minor and mentally retarded daughter, go out of his sight even for a single day. It was indeed a dilemma! My parents had to make a choice and they made it; Nancy was to stay put ….”
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Mad House: Growing Up in the Shadow of Mentally Ill Siblings
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Mad In America: Bad Science, Bad Medicine, and The Enduring Mistreatment of the Mentally Ill
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Crazy in America: The Hidden Tragedy of Our Criminalized Mentally Ill
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The Mad Among Us: A History of the Care of Americas Mentally Ill
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Repercussions
Her parents had made a choice; a choice of keeping Nancy in the house as they never felt strong enough to put her in some facility but they had probably not anticipated the adverse affect it eventually had on their other two daughters (the youngest one passed away when she was in High School). As I delved deep into her heart-rending story, I could very well imagine what Alisha might have gone through and what she might have had to withstand, with her heart bleeding and mouth shut all the time. Apparently, she had never been able to get from her parents, the love and attention which she had so much craved for, in her childhood. Nancy had devoured each and every moment of the happiness which she rightfully deserved. I could clearly see why Alisha had turned into an introvert, quiet, hypersensitive and an enigmatic person. She surprised me when she blatantly admitted that despite trying hard to be normal in her personal life, she had never been able to live like any other woman of her age. “May be I suffer from some psychological disorder which I don’t even know about.” She briefly paused and looked down (her hands clasped together) as she wound up, putting the entire blame on her own self, for her unsuccessful married and social life. What else could a daughter do?
Should mentally challenged kids be alienated?
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Comments
Anjali, a powerful and thought provoking hub. It's heartbreaking to hear a child blame herself for the dysfunction of a family. "Shame on the parents!" is my first reaction, but I can only offer sympathy not empathy.
Such children will never be 'normal', but should never be outcast!
How do you know this true story of my family. My sister lived like Nancy for 25 years in our home. She is no more now. My parents cannot go together for a picnic or for a function. But we were also given equal imporance by our parents. Very good medical treatment was given to our sister while we were given very good education. We accepted her as she was and moved with her as we move with others. We quarelled with her. We bought chocolates for her. We made her understand slowly that she is also important and not she is the only important. Poor girl died due to TB.
Family people only will have to solve this. Prayers will make the members of the family to maintain their wits.
What to do? Understand to accept as what is given to us by God.
cgull8m: There seems to be slight confusion. Nancy is the mentally retarded girl not the woman I spoke with. Anyways that's not the point. You are right. She should move forward and leave her past behind. Since this is a true story, I can only speak for this woman. She has been trying her best but it seems that her memories have been affecting her present as well. Thx for reading.
Mike Kage: We can only sympathize with the woman (Alisha) in the story. Sometimes I really wish that the parents had decided to keep Nancy in a facility rather than keeping her at home along with other siblings but then whatever is done cannot be undone. Just as you said, one can only show sympathy. So much could have been saved from getting destroyed. But..... Thx for visiting.
easetravels: All mentally challenged kids are not alike. The situation worsens when a retarded child is violent and aggressive too, as was the case in the present story. Nancy's violence sucked out every drop of happiness from the family and that is what is unfortunate. Thx for your comments.
Anjali..a real heart rending story! I had all along sympathized with the parents of such children but never thought of the effect on the siblings..esp when the challenged child is so violent! It is so very sad indeed. Often, we take decisions, which we think is right at that point in time, but then, time tells a different story.
We just cannot judge people, as at that point it would seem right to them. The parents must have felt guilty to let go of a helpless baby whom they brought into this world! They would have felt responsible .Its understandable! If the child was not violent, the situation might have been different! We do not have answers to so many whys and ifs in our lives. We can only console ourselves by saying what is meant to happen has happened , especially when things are beyond our control. This thought goes a long way in healing!(Treading the wrong path does not fall into this category tho”)
It is sad that Alisha had to gone through so much trauma for no fault of hers,but then at least she had a home and family..a family who had values, not to abandon a challenged child! We see so many parents abandoning their children.. those children too go thro’ trauma. So many orphan children who do not have homes and parents for no fault of theirs .So, Alisha should think of the of the more unfortunate ones and she will realize her situation was not that bad. She can even look at her new born baby and think whether she will let it go if it was not normal..It will heal her too! Just my humble view.Thanks for such a great hub Anjali..I had never thought about this angle though.
Anjali..Are your books available in Indian stores? Esp in Chennai or maybe Bangalore?
Anjali,another thought just came to me..maybe we should explain to Alisha that Nancy was born challenged for no fault of hers.BTW,have you seen the movie 'Anjali' by Mani Ratnam?It was taken in Tamil first and I think it was dubbed in Hindi too.It had this theme.The siblings resented the challenged child and even felt ashamed,but ultimately they accept her.Yes,I vivdly remember one scene where the harassed mother tells her challenged child"I've neglected my other children just for your sake"...its a beautiful and touching movie..just check it out Anjali..
Laila Rajaratnam: Thx very much for taking out time to read this story. I felt the same way as you did. Parents couldn't have been blamed for what they did. At the same time I felt equally bad for Alisha the way her whole life changed because of the reasons discussed. When we find no solutions, we blame the destiny. Sometimes we as human beings, no matter how strong we might be, find ourselves totally trapped in our situations and find no way out. Thx for your comments.
My book is available on the website (link given above). Apart from that it will be sold (in about a week's time) on Amazon, Barnes & Nobles, Borders and other online bookstores. Besides, the distribution channel includes around 20,000 book stores in USA & Canada. However, in India I'll have to give publishing rights to a publisher. Even there Amazon (online) would show it on the web. Thx
Laila: I've seen that movie three times. That girl (Anjali) in the movie was shown as a very sweet & pretty little girl. You could sympathize with her, the way she was. Trust me, Nancy was nowhere close to that girl in respect of her violence and behavioral patterns which I have not touched in the story. But I know.. that has no bearing on the decision taken by Alisha's parents. They had to take it anyways. Thx
Hi Anjali :0)
Great Hub....I drove special needs children and worked in a special ed class room and during that time saw many parents make some very tough decisions and honestly I would not want to have been in their shoe`s. Many of these parents I came to know on a very personal level and cried with some at the decisions some had to make....not too sure what I`m trying to say here, only as you yourself know it’s a case by case situation and all family members have to be considered and we on the outside can only come along and help where we can and not judge as you know and pray that the right decision is made for everyone concerned....
Heart touching Hub....Mike :0)
It is hard to live with violent people, even if they're your sibs or even parents. So I think that if they're violent, they should be alienated for the safety and sanity of everyone around. If they're not violent then they deserve a life with their family.
I didn't read any comments, but I would say no, the child must stay with the parents. I think though many people will have a very difficult time with it, I couldn't imagine being able to live with the thought- that its not the child's fault and that all they want is to be loved too. the family has to cope, because that's what they do. Leave no one behind.
Mentally challenged people are rarely this violent unless some severe brain injury occurs. In America most parents handle this situation quite well, violent or not and made arrangements if necessary.
Unfortunately, when someone is brain injured, mentally challenged or not, they do get violent and dangerously so. Most likely the parents in your story were embarrassed and just plain overwhelmed, not thinking past the most recent episode to realize how it was affecting them or their other children.
I've worked with a lot of different kinds of Special Needs people, children and adult. My mother-in-law became the first champion of special needs people in the state of Louisiana and also a teacher in the school system in the early stages of figuring out how to almost mainstream - or not - the children.
What motivated her? One of her 5 children was born with a birth injury (hospital fault though they never sued) and she was declared a vegetable. The truth is that my sister-in-law is basically regressed to the level of a really cool five-year-old with all the joy and enthusiasm of that mental and emotional age.
However, because of brain injury she has taken heavy anti-epilepsy meds since age 2. Eventually, her parents knew she would need too much care and the meds would cost too much for any of her siblings to care for her in her old age.
So, my mother-in-law made the agonizing decision to place her daughter in an institution she helped create in this state. She put her in and took her out a few times, crying all the while, until she settled on being separated from her daughter. They placed their daughter when she was 16 as they thought she was finally old enough to adjust to a new situation. They also wanted to place her while she was still young and emotionally flexible to bond with the workers there.
The compromise came about that every 2 weekends the family goes and picks her up from the institution, along with a huge bag of meds, and takes her home for the weekend. That has suited everyone quite well. It isn't an ideal situation but one that works for everyone and with a lot less stress all around.
Resentment, frustration, anger, guilt are all the usual emotions for the siblings. In your friend's case, she was indirectly abused by the parents being overwhelmed. The smart thing to do is get some grief counseling to find her balance. If she is inclined, to also seek on some spiritual level as that is where she is most wounded. The Divine connection can give Love like nothing else.
Since I experienced another kind of childhood abuse I can say from my own quest for balance that it is important to ask what was the learning experience? Otherwise, the negativity is too overwhelming. When you figure it out, then it's time to learn how to separate the seared negative emotion from the memories, PTSD, to find her way to freedom and balance. I wish her good luck and a determination to heal all the way, refusing to settle for anything less.
mike / cynthia: For parents it's like ripping off a piece of their heart when they leave such children in a facility. It is a tough decision and some are forced to take such difficult ones in life. Finally it comes down to ...'What cannot be cured has to be endured. Thx for your kind comments.
BeatsMe: I know what you are saying. Whatever said and done it's more than 'just difficult' to live with a viloent mentally challenged. It means spending days and nights in such an insane environment which can drive even normal people crazy. Thx for reading.
Goldentoad: Your comments are appreciated. I understand your view point. That's why some parents are not able to let go such kids out of their sight, no matter how tough it might be to have them around. Thx for visiting.
Denny Lyon: I can't express in words how much your comment has meant to me. The decision that your mother-in-law took was by far the most appropriate in the given circumstances. I think I would have done the same considering my other children. I believe there are ways to combat a situation if one really wants to. One needs to have a foresight though, to assess the far reaching effects of not taking any suitable action (like what happened in my friend's case). As far as spiritual healing is concerned, she has gone a long way on that path. I have explained that part in detail in my book (link given above). Due to space constraint, I could not cover that here. Alisha suffered miserably all her life and the only remedy which helped her buying peace was spirituality. She lost her childhood and youth, though. My idea of writing this hub was to force the readers to assess and re-assess the effect such problems have on the siblings. It might help some parents to alter their decisions if they happen to have such a problem in their lives. Thx very much for taking out time to read this.
You can't conflate learning difficulties or mental illness with violence. Many prople suffer from the first, but not the second, and many violent people are perfectly "sane".
I have a lifetime of working with mentally challenged people, adults and children. In all cases the mentally challenged individual copes better with life if family is involved. Putting a person away .. out of sight out of mind .. does not make the situation go away.. it just makes it worse. There are few institutions that can provide the actual love that a mentally challenged person needs. In my experience I have found these instutions are staffed by high school graduates who are just looking for a job and have little compassion for what they do. I understand the plight of the family and how difficult it is to not burn out after dealing with the same situations/behaviors over and over. That is why it is important to build suppport systems in out families and communities. Maybe there will be more commmuniy programs in the next four years..
LondonGirl: I am a little confused. Possibly I didn't understand what you actually meant. This is a real life story which I discussed in my hub. So I don't think I tried to conflate the two things as you mentioned. This is what has actually happened. Please let me know if I misunderstood. Thx for visitng.
Ms. Chievous: You're right. I still wish there was 'a home away from home' where these kids could get love and compassion they need. It would be a win-win situation for everyone. Thx for your kind comments.
Your question is a general one; it concerns me that the impression is created that violence is typical of those with mental illness or learning difficulties.
LondonGirl: My question was specifically in relation to the content of my hub. It was not intended to be generic. If it gave that impression then I stand corrected. Thx for coming back.
Anajali- My view is that such issues need to be dealt on a case to case basis. If the mentally challenged kid is able to adjust and others are able to adjust to them then it should certainly be the first preference but in case it affects the family happiness no matter what efforts are being taken then it is best both for the child and the family that they should admit such kid in special facility where specialized care can be provided for. I agree with Laila that movie Anjali certainly bought the issue of mentally challenged kids in limelight in India. Thumbs up for a thoughtful hub.
CW: That's what I think. Some 'via media' has to be struck. After all, the emotional needs of other children in the family cannot be overlooked. You're right in saying that the situation differs on case to case basis and nothing specific can be prescribed. One has to assess a lot of factors before taking any decision. As I said earlier in my reply to Denny Lyon's comment, my sole purpose of writing this hub was to show the facts from the eyes of a sibling, for a change. Siblings are often forgotten in such situations. Thx very much for your comments.
Have the parents turned to God for guidance, comfort? The parents did not react correctly towards the other two siblings.
einron: Yes, I feel bad for the other two. The parents had to be far sighted to anticipate the results. It must have been hard for parents too. Only God can help in some situations. Thx for your kind comments.
Anjalichugh, this is a sad story. The violent behavior of the mentally disabled daughter should have been taken into consideration by the parents. I think that the question is not so much should mentally disabled children be institutionalized or not. That is a decision for the parents to make on a case by case basis. But there is a hidden assumption in the question, which is: if parents do choose to keep a violent disabled child at home, what measures are they allowed to use in order to protect the rest of the family?
Institutions where violent people are housed use restraints and drugs in order to protect others from the violent person. Violent people are kept in a different ward, and their access to others is limited. People who choose to take care of a violent family member at home should be allowed to use reasonable measures to protect others, too. This might mean, for instance, reserving a special wing of the house for the violent person, and not allowing the violent person to disrupt all social activities.
Aya Katz: You are absolutely right. I agree with you. It is the parents' decision and that differs from case to case basis but appropriate measures should be taken to ensure that the siblings live a normal healthy life. Thx for visiting. Your comments are appreciated.
I'm actually feeling torn with mixed emotions right now. One bearing the good news.."You've made it again to the hubnuggets list this week!" and the other being "this sounds so heavy, my heart feels this woman's pain." Situations like this are never easy and the choices each parent will make will affect the child and siblings one way or the other.
ripplemaker: Thanks very much for the good news. I really found my family here. I'm thrilled.
Referring to this hub, I know it's simply unfortunate for those who get caught in such situations. The more I think about it the more clueless I end up. Only God can help such people find their way. Thx for visiting.
I also agree on a case by case study whether to separate a mentally challenged child from the family. I have seen first hand from families who had no clue how to handle such a child and no desire to learn. This takes a total commitment with more than just that child's well-being at stake. It includes the total family. Each situation should be weighed very carefully. There are no easy questions for such personal matters but for some, tough love is the best all around answer.
It's a gut wrenching decision for any parent. One that I have not had to make but either way the loss and grief would be unbearable. Thanks for sharing and making us think.
Dottie1 & NVarchitect:
Definitely, it is one of the most difficult decisions which parents have to make. It is more than difficult to strike a balance in such situations. One or the other ends up getting hurt and devastated. My only intention was to highlight a sibling's predicament amidst such problems. It was entirely from the eyes of a sibling.....a sibling who felt forgotten and neglected in the process.
Thx for your time and kind comments.
This is just a sad and touching story for all concerned. It also makes me realize how lucky I have been with my children.
Thanks for bringing this difficult situation to light. I'm sure that there are probably a fair number of people who have been in similar situations. They may be able to take a little comfort in the fact that they are not alone in the experience.
I think also, that you have given parents of mentally challenged kids a different, 'big picture' perspective that may help them make a difficult decision. I do not envy them or the heartbreak they must feel.
Great job on this sensitive topic, Anjalic!
Shirley Anderson: You've said it all. I don't need to add anything. That was indeed my purpose ....to show the picture from a different perspective. Thx very much for your kind comments.
Great story on a difficult problem. I honestly don't know what I would do. I am thankful I have never been confronted by this situation. Thank you for writing this. You did an excellent job!
Christoph: I know even I wouldn't know what to do. These things are situational. One takes decisions based on several factors which might be governing our lives at a given point of time.
Thx for your time and kind comments.
I have too often observed that mentally or physically challenged kids are infact more intelligent than normal ones. They don't need any sympathy. They just need little love and guidance and they will be on their way.
Why ????
These kids just need help......... my comments are purely personal, as I feel that they should be tried to be integrated with normal kids. Ofcourse, with some extra help from us... Have experienced the trauma of one and am speaking from experience..
Guidebaba & affiliater:
In a way you are right. As you already know all mentally challenged kids are not alike. They can exhibit varied behavioral patterns ranging from a simple learning disability /dyslexia to extremely violent & abnormal mental condition. The decision of either keeping them in the house or alienating them, basically differs from case to case. Not all of them are capable of moving ahead in life with love & sympathy. I'm saying this out of my personal experience. I know it's a very tough decision for parents but they owe a responsibility towards other kids also. Again, every case is different.
Thx for your time and kind comments.
Not only parents but the society as a whole owe some responsibility towards such kids.
You write great hubs. This one is superb. I hope that you get the award for best hub nugget. Cheers !!
hipattrick: Thank you very much for your encouragement and appreciation.
Good article and thought provoking.
In the 1970s, a family in Indiana adopted a very young son, but the agency did not tell them about his serious medical history. By the time he was 5, he had burned the family's house halfway down (seriously), tried to kill the 4-year old daugheter of the family and nearly succeeded, attacked the parents with sharp knives in the middle of the night, and many other disasters. The parents tried to give him back to the agency, it went to court, and the judge ruled against them. They attempted to find a facility for this young boy, but uncessfully and I do no know what happened to them all in the end. I hope the adoption agency was held responsible.
Patty Inglish: I wish you had left this comment much earlier so that other people who landed on this hub could have read it. No one, but me, can understand what it might have been for that family. It's so unfortunate that some people get caught in such situations and the worst thing is that they find no way out.
Thx for reading.
There are other ways of handling behavior problems than institutionalization. Alisha's situation is tragic, yes. It happens in many homes and not just if a child is mentally challenged. Sometimes it happens because a parent is. Who's got any way out then?
Sometimes a mentally challenged child can grow up to glue a family closer together. That depends a lot on what the challenges are and how well the parents handle the special needs of that child and their other children. Either could be a bad decision. Parents who can handle even healthy normative children without warping their psyches and terrorizing them into lifelong problems are rare enough as it is.
This shows one side of the coin. It doesn't say anything about whether Alisha's life would have been any better without that obvious scapegoat of the family's dysfunction there on the spot to be an excuse for isolation and probably a host of codependence-related emotional problems. That insecurity doesn't just come from the obvious challenged individual. It comes in the ways people adapt to unacceptable behavior instead of finding reasonable ways to hold boundaries.
Tough call.
Not everyone gets the kids that have everything perfect.
I voted "Can't Say" because it varies so much with every individual household affected by a member who's mentally challenged. For that matter the slow, the learning disabled and the mentally ill including the violent mentally ill are all combined in that question -- when degree of symptoms and type of symptoms plus parental skill have a lot to do with what would be the best decision in any individual situation.
robertsloan2: I guess I too would have voted for 'can't say' as every situation is different and as you said all mentally challenged kids are not alike. Hence the decision also has to be different in each case. The question is how many parents are able to handle the situation in a way that siblings don't get affected.
Thx for your time and thoughtful comments.
Life can be hard in more ways than we think. Your story is heartfelt. Interesting and sad!
C.S.Alexis: You're right. Life can be too complicated sometimes and the irony is that it's not always because of our actions.
Thx for visiting.
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cgull8m says:
10 months ago
Tough story Anjali, I wish there were special hospitals for such children so they can live there but still will be needing help around the clock, who else can provide that except for the family. Nancy did her best but she shouldn't spend time dwelling on the past. I read a quote today from a coach of my university, Kay Yow who died today, she battled cancer for a long time and still refused to quit her job and coached the college team basketball. She said the following, which Nancy and even us should use it:
"When life kicks you, let it kick you forward."
Maybe Nancy can use psychological counseling sessions to move past that.