A Blue Rose
Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, So off I went.
I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."
It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"
"My name is Denny and I'm shopping with my mother," he responded proudly.
"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."
"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"
"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.
"You're fifteen-years-old Denny; now be a good boy and let the man pass by."
I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the centre of someone's attention. He then abruptly turned and headed toward the toy section.
Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.
I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of God. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.
She was silent for a second, then with a tear in her eye she asked, "Who are you?"
Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."
She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.
May I suggest, the next time you see a BLUE ROSE, whichever differences that person may have, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece, nephew or any other family member.What a difference a moment can mean to that person or their family.
From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly.Leave the rest to the powers that be.
"People will forget what you said, People will forget what you did, but people will never forget how you made them feel !"
Thursday, May 24, 2012
Tuesday, May 22, 2012
we all must fight for this noble cause
After years of fighting abuses against children on a country-by-country basis, Disability Rights International has gathered much evidence that the institutionalization of children with disabilities is a worldwide problem. Over the past 18 years we have documented abuses against children in over 25 countries in the Americas, the United States, Eastern Europe and Russia, the Middle East and Asia. The dangers of institutionalizing children are pervasive and take place all over the world, including well-resourced, developed countries. Disability Rights International is calling for an end to the institutionalization and abuse of children.
The goal of the Worldwide Campaign to End the Institutionalization of Children, is to challenge underlying policies that lead to abuses against children on a global scale. One of the main drivers of institutionalization – particularly in developing countries – is the use of misdirected foreign assistance funding to build new institutions or rebuild old crumbling facilities, instead of providing assistance and access to services for families who want to keep their children at home. Disability Rights International will document the role of international funders in perpetuating the segregation of children with disabilities.
Locked away and forgotten
Children with disabilities around the world are locked away in institutions and forgotten – many from birth. We have seen children left permanently tied into cribs and beds where many die. Some die from intentional lack of medical care as their lives are not deemed worthy. Some die from lack of touch and love. Most in these conditions never make it to adolescence. And those who do are condemned to a lifetime inside the walls of an institution just for having a disability. Children with disabilities are rarely eligible for foster care in countries where it is available and parents who do want to keep their children with a disability almost never receive any help or support. And governments and international donors spend millions worldwide building and rebuilding these torture chambers for children with disabilities instead of supporting families, substitute families when necessary and community services and education.
Child in restraint chair at the Judge Rotenberg Center in the US
A teenager in Romania, muscles atrophied from a lifetime in a crib
A teenager with austism, Jorge, locked in a filthy cell in Paraguay
Findings by Disability Rights International on conditions of institutionalized children includes:
– In Mexico, there is almost no official oversight of children in private institutions, and children have literally “disappeared” from public record. Preliminary evidence suggests that children with disabilities have been “trafficked” into forced labor or sex slavery;
– In the United States, children with autism and other mental disabilities living at a residential school in Massachusetts are being given electric shocks as a form of “behavior modification”;
– We have found children with autism in Paraguay and Uruguay locked in cages;
– In Turkey, children as young as 9 years old were being given electro-shock treatments without anesthesia until we exposed the barbaric treatment;
– In Romania, we found teenagers with both mental and physical disabilities hidden away in an adult psychiatric institution – near death from intentional starvation. Some of the teens weighed less than 30 pounds;
– In Russia, we uncovered thousands of neglected infants and babies in the “lying down rooms,” where row after row of babies with disabilities both live and die in their cribs.
n- in pakistan there are institutions for blind and deaf children where children are locked and mentally and physically abused.
– In almost all institutions with children, we find them rocking back and forth, chewing their fingers or hands or gouging at their eyes or hitting themselves – all attempts to feel something rather than nothing and a reaction to total sensory deprivation and a lack of human love or contact;
Instead of providing children with the families or caregivers and the love they need, children in institutions are tied into cribs and chairs, tethered into strait jackets, wrapped tightly into blankets, and hands covered completely in plastic bottles, causing more pain to a child already living a horribly abused and neglected life.
The reform of international development policy is essential to our goal of ending the worldwide institutionalization of children with disabilities. We have found that the United Nations, European governments, and other international donors play a major role in perpetuating the institutionalization of children with disabilities. In developing countries, the infusion of foreign financial support can have tremendous influence on social policies and human rights. Well-meaning but misguided international donors have, unfortunately, been part of the problem in much of the world. International support has often been used to rebuild and refurbish orphanages, psychiatric facilities, and other institutions at the expense of community programs and families. This support reinforces outmoded systems of institution-based services and perpetuates discrimination and segregation of children with disabilities worldwide.
We need to establish a worldwide consensus that institutionalization of children with disabilities can and should be brought to an end. We need to fight to protect those children suffering today and to stop the next generation of children with disabilities from ever being locked away and forgotten
Please support our campaign by making a donati
The goal of the Worldwide Campaign to End the Institutionalization of Children, is to challenge underlying policies that lead to abuses against children on a global scale. One of the main drivers of institutionalization – particularly in developing countries – is the use of misdirected foreign assistance funding to build new institutions or rebuild old crumbling facilities, instead of providing assistance and access to services for families who want to keep their children at home. Disability Rights International will document the role of international funders in perpetuating the segregation of children with disabilities.
Locked away and forgotten
Children with disabilities around the world are locked away in institutions and forgotten – many from birth. We have seen children left permanently tied into cribs and beds where many die. Some die from intentional lack of medical care as their lives are not deemed worthy. Some die from lack of touch and love. Most in these conditions never make it to adolescence. And those who do are condemned to a lifetime inside the walls of an institution just for having a disability. Children with disabilities are rarely eligible for foster care in countries where it is available and parents who do want to keep their children with a disability almost never receive any help or support. And governments and international donors spend millions worldwide building and rebuilding these torture chambers for children with disabilities instead of supporting families, substitute families when necessary and community services and education.
Child in restraint chair at the Judge Rotenberg Center in the US
A teenager in Romania, muscles atrophied from a lifetime in a crib
A teenager with austism, Jorge, locked in a filthy cell in Paraguay
Findings by Disability Rights International on conditions of institutionalized children includes:
– In Mexico, there is almost no official oversight of children in private institutions, and children have literally “disappeared” from public record. Preliminary evidence suggests that children with disabilities have been “trafficked” into forced labor or sex slavery;
– In the United States, children with autism and other mental disabilities living at a residential school in Massachusetts are being given electric shocks as a form of “behavior modification”;
– We have found children with autism in Paraguay and Uruguay locked in cages;
– In Turkey, children as young as 9 years old were being given electro-shock treatments without anesthesia until we exposed the barbaric treatment;
– In Romania, we found teenagers with both mental and physical disabilities hidden away in an adult psychiatric institution – near death from intentional starvation. Some of the teens weighed less than 30 pounds;
– In Russia, we uncovered thousands of neglected infants and babies in the “lying down rooms,” where row after row of babies with disabilities both live and die in their cribs.
n- in pakistan there are institutions for blind and deaf children where children are locked and mentally and physically abused.
– In almost all institutions with children, we find them rocking back and forth, chewing their fingers or hands or gouging at their eyes or hitting themselves – all attempts to feel something rather than nothing and a reaction to total sensory deprivation and a lack of human love or contact;
Instead of providing children with the families or caregivers and the love they need, children in institutions are tied into cribs and chairs, tethered into strait jackets, wrapped tightly into blankets, and hands covered completely in plastic bottles, causing more pain to a child already living a horribly abused and neglected life.
The reform of international development policy is essential to our goal of ending the worldwide institutionalization of children with disabilities. We have found that the United Nations, European governments, and other international donors play a major role in perpetuating the institutionalization of children with disabilities. In developing countries, the infusion of foreign financial support can have tremendous influence on social policies and human rights. Well-meaning but misguided international donors have, unfortunately, been part of the problem in much of the world. International support has often been used to rebuild and refurbish orphanages, psychiatric facilities, and other institutions at the expense of community programs and families. This support reinforces outmoded systems of institution-based services and perpetuates discrimination and segregation of children with disabilities worldwide.
We need to establish a worldwide consensus that institutionalization of children with disabilities can and should be brought to an end. We need to fight to protect those children suffering today and to stop the next generation of children with disabilities from ever being locked away and forgotten
Please support our campaign by making a donati
Wednesday, May 16, 2012
why is the parents support center important
Try a little tenderness
by Mary McDonach
When you are first confronted by a diagnosis of any type of syndrome, disease, or congenital malformation in your child, a natural response is the Grief Reaction.
Because the grief reaction is a natural response, you are likely to go through at least some of the Stages of Grief. What can you do? You can either simply endure and hope that it eventually subsides or you can consider a few practical steps to process your thoughts and feelings a little quicker in order to make things a little easier... on everyone.
Just understanding what is happening by looking for the signs and markers of your grieving will help you on your journey through the stages of grief. Everyone's experience of grief is unique; there is no right or wrong way to feel, and whatever you are feeling, it is valid.
Let's go through the stages of grief one by one...
Stage #1: Disbelief
What Other Parents are Saying:
"While I was still in the hospital after Tony was born, the pediatrician told me that he was blind, but it didn't sink in. I really believed that all I had to do was to get him home and then he would be okay."
-From Children with Visual Impairments
You have an intellectual understanding of what you are being told but you also believe that someone has made a "Terrible Mistake" (in just this one case) and what is being said does not apply to you or your baby. Often, the paradox here is that you asked for this consultation; you felt at some fundamental maternal level that there was a problem with your child's sight!
This is not just a matter of believing the doctor; it is also about being able to feel at a visceral level that the information you are being given is correct. It can be helpful to consider where the doctor is in this situation—He does not want to be giving you this diagnosis any more than you want to be listening to it and he will have made triple sure of his facts before putting himself in a situation that makes him seem like the cause of your pain.
Health professionals do not lightly give distressing information (although they may often seem cold or uncaring—this is quite possibly their own poorly thought out emotional response to the situation). They are well aware of the grief process, and the long-term consequences of living with and raising a blind baby. And, yes, very occassionaly mistakes may happen, but you can be sure your doctor will have done all in his power to ensure the information he is presenting to you is accurate.
Your doctor will know that often, in the immediate aftermath of the diagnosis, you are unable to process any other information. I know from personal experience that after the initial few sentences from the pediatrician, all I could hear was a voice in my brain saying "She's got what?" repeatedly. It is difficult to assimilate more than the very basics at that first consultation and it happens to almost everyone. That's why the first contact with the physician is brief; it gives you an opportunity to go away, speak to your significant others, come, at least, to a first position of truce with the information you have been given, and sort through the questions you would have asked at the first consultation had you not been so traumatized.
During this stage, you may find that your emotional responses to things that would have made you cry, laugh, etc. are all more muted. You may feel a withdrawal from the world you usually inhabit and an inability to articulate how you feel. This can put a strain on your relationships, and if you have decided not to confide in anyone about the diagnosis you have been given they may feel confused, offended, or concerned about your apparently sudden personality change.
It is easy to see how logical, at this stage, it can be to simply ignore the issues surrounding your child's blindness: if you are not addressing things then they can't be happening because if they were happening you would be addressing things! There is a comfort in reassuring, circular logic, and it may work to relieve the pressure you feel, for a time, but for the sake of your child, the shorter the denial reaction the better.
Whilst all this is going on, though, your subconscious cannot ignore the feelings you are suppressing and tries to reach its own accommodation with things, so your sleep can be disturbed and provide little rest, which has further impact on how you feel during the day.
Stage #2: Anger
What Other Parents are Saying:
"At first I was very angry and bitter, and I blamed God. I have since learned to adjust to my son's disabilities. Never will I accept them, but I will continually adjust."
-From Children with Visual Impairments
Anger is the next stage in the grief process and you may surprise yourself with your willingness to assign blame for your child's condition! Blaming yourself, your partner, your prenatal care, your post natal care, your housing conditions, your mother's "little drink problem," that spray you used on the cat, all allows you to indulge in a search for a reason that has little to do with informing yourself about your child's condition and lots to do with an atavistic need for a scapegoat.
The "why me" question can exhaust you looking for answers and more often than not the only answer you are ever likely to get is "why not you?" "Why did God forsake me?" you may ask, but God did not forsake you—you had a baby with special needs!
Does it really matter how your baby came by the condition? Will it help if you finally track down every last member of your husbands' family in order to prove to him that it must have "come from his side?"
Will your baby be blind regardless of How's and Why's? The distraction of the anger phase can give you useful time and motivation that you need to let others know what's happening with your child.
If you feel you have to say to your family or your neighbors or the postman "My baby is blind because my nogoodnik husband has a genetic weakness" then fine. When you remember saying that next year you may be embarrassed, but at least today the information is out there and you are starting to deal with it—after a fashion!
Blaming yourself can be the beginning of a lifelong relationship with guilt. This will not enhance your relationship with your child or with the rest of your family, so work through your feelings about blame with a view to getting rid of them. They will not help and in the long term these feelings will be damaging—to everyone—if they are left unchallenged.
Stage #3: Bargaining
What Other Parents are Saying:
"I know Jason has delays—I just keep expecting them to go away. I wonder what I have done wrong that he still has these delays."
-From Children with Visual Impairments
This is the fanciful part of grieving! You may not be sure who you are bargaining with but very often as parents we come to a position I think of as "negotiating with the cosmos." Are any of these statements familiar to you?:
• We are hoping that she's not so badly affected (by whatever).
• The doctors say it is a very mild case.
• Scientists are searching for a cure; they are very hopeful.
• He's affected to this degree; we couldn't have coped if it had been worse.
This can bring a subtle skewing of your ability to see the facts as they are. If you entrench yourself in the position that you can cope with, say, blindness but not blindness and deafness, are you truly open to seeing your child for who she is? Negotiating with an apparently silent deity or universe is a facet of bargaining that can leave you with a profound feeling of isolation, but being aware of what you are experiencing and knowing that it is finite often helps.
Bargaining can often, too, lead to a false perception of acceptance. One mother I know had found a way to protect her child with albinism: by not taking him out during daylight hours. Certainly, by treating her son, not as having albinism, but, more disturbingly to my mind, as though he had vampirism, she had come to a bargained accommodation with the facts. He could not be burned by the sun if he was never exposed to it and that was the current amount that this mother was able to accept. It is readily apparent though, that this was not a situation that could go unchallenged indefinitely, for anyone's sake.
Stage #4: Depression
What Other Parents are Saying:
"After a few tries of going to the store or to church, I just stopped. I couldn't stand how people looked at my baby (or at me)."
-From Children with Visual Impairments
Depression also can make an appearance whilst you are coming to terms with your grief. You will be aware that there is far more to dealing well with depression than I can write about here. So if you are currently suffering from the effects of depressive illness GET MEDICAL HELP! That you should deal with it is absolutely paramount.
You may feel that there is no reason for you to be depressed, you had a child; no-one died. It is reasonable to say, however, that you are grieving for the child you expected to have; no parent starts out thinking "I hope my child will be blind." That would be ludicrous, so when your child is diagnosed as blind (and everyone hopes fervently for another outcome) there is a kind of bereavement.
You have every right to grieve: for your hopes, for the trauma you have been through, and for your child and the limitations this condition gives him.
There is an unexpected positive to be seen in depression, paradoxically, because this is the immediate forerunner of acceptance and means that you have accepted the facts of your child's condition, at least to some extent (or why else would you be depressed?).
Stage #5: Acceptance
What Other Parents are Saying:
"From my child, I have learned to love unconditionally. My life has been opened up to include experiences I never would have considered."
-From Children with Visual Impairments
This will come. You will accept a new reality for yourself and your family. You will come to visualize a viable new way forward, embracing the new reality and accepting the burden of the work that lies ahead.
For my part, I spent a short time in a mini-phase of Trying it on for Size, also known as Inappropriate Disclosure. I have a vivid recollection of telling the manager of my local Gecko! Shop that I would be unable to buy one of his fine animals because my baby had been born blind!!!
Neither then nor now have I ever had any desire to own a reptile so exactly what I was thinking escapes me (not to mention the fact that I'm sure a blind child could handle a lizard just as well as a sighted one), but I will give myself credit for imaginative thinking when it comes down to identifying those people who comprise my community!
Moving Forward for Yourself & Your Family
What Other Parents are Saying:
"I don't think my husband and I have been on the same wavelength since our daughter was born. It seems like one of us is always up, while the other is down. Sometimes I think he's being unrealistically optimistic, and sometimes he thinks the same of me."
-From Children with Visual Impairments
Not everyone goes through the grieving process, and not everyone who does go through it goes through it in the order I have described nor even always has each part of the process. It is an entirely individual experience and is as valid in its differences as it is in its similarities.
This can be particularly difficult for married couples who find themselves on opposite ends of the grieving process. The incidence of divorce in families with disabled children is exceptionally high, partly due to the obvious stressors and pressures of having a disabled child, but also partly because both parents may be experiencing the grieving process in unique and individual ways and unable to offer each other the love and support they need. Dealing with the grieving process head on will not only benefit yourself and you child, but also your marriage!
The reason for this article's title is to help you look at where you are in the process and how you are behaving towards yourself. Get a coffee in a quiet moment and think—When did you last show yourself any tenderness, any charity? Try to be more gentle with yourself; there is no "blinding catharsis," but acceptance will come. Just when you least expect it, you'll get what you least expect!
by Mary McDonach
When you are first confronted by a diagnosis of any type of syndrome, disease, or congenital malformation in your child, a natural response is the Grief Reaction.
Because the grief reaction is a natural response, you are likely to go through at least some of the Stages of Grief. What can you do? You can either simply endure and hope that it eventually subsides or you can consider a few practical steps to process your thoughts and feelings a little quicker in order to make things a little easier... on everyone.
Just understanding what is happening by looking for the signs and markers of your grieving will help you on your journey through the stages of grief. Everyone's experience of grief is unique; there is no right or wrong way to feel, and whatever you are feeling, it is valid.
Let's go through the stages of grief one by one...
Stage #1: Disbelief
What Other Parents are Saying:
"While I was still in the hospital after Tony was born, the pediatrician told me that he was blind, but it didn't sink in. I really believed that all I had to do was to get him home and then he would be okay."
-From Children with Visual Impairments
You have an intellectual understanding of what you are being told but you also believe that someone has made a "Terrible Mistake" (in just this one case) and what is being said does not apply to you or your baby. Often, the paradox here is that you asked for this consultation; you felt at some fundamental maternal level that there was a problem with your child's sight!
This is not just a matter of believing the doctor; it is also about being able to feel at a visceral level that the information you are being given is correct. It can be helpful to consider where the doctor is in this situation—He does not want to be giving you this diagnosis any more than you want to be listening to it and he will have made triple sure of his facts before putting himself in a situation that makes him seem like the cause of your pain.
Health professionals do not lightly give distressing information (although they may often seem cold or uncaring—this is quite possibly their own poorly thought out emotional response to the situation). They are well aware of the grief process, and the long-term consequences of living with and raising a blind baby. And, yes, very occassionaly mistakes may happen, but you can be sure your doctor will have done all in his power to ensure the information he is presenting to you is accurate.
Your doctor will know that often, in the immediate aftermath of the diagnosis, you are unable to process any other information. I know from personal experience that after the initial few sentences from the pediatrician, all I could hear was a voice in my brain saying "She's got what?" repeatedly. It is difficult to assimilate more than the very basics at that first consultation and it happens to almost everyone. That's why the first contact with the physician is brief; it gives you an opportunity to go away, speak to your significant others, come, at least, to a first position of truce with the information you have been given, and sort through the questions you would have asked at the first consultation had you not been so traumatized.
During this stage, you may find that your emotional responses to things that would have made you cry, laugh, etc. are all more muted. You may feel a withdrawal from the world you usually inhabit and an inability to articulate how you feel. This can put a strain on your relationships, and if you have decided not to confide in anyone about the diagnosis you have been given they may feel confused, offended, or concerned about your apparently sudden personality change.
It is easy to see how logical, at this stage, it can be to simply ignore the issues surrounding your child's blindness: if you are not addressing things then they can't be happening because if they were happening you would be addressing things! There is a comfort in reassuring, circular logic, and it may work to relieve the pressure you feel, for a time, but for the sake of your child, the shorter the denial reaction the better.
Whilst all this is going on, though, your subconscious cannot ignore the feelings you are suppressing and tries to reach its own accommodation with things, so your sleep can be disturbed and provide little rest, which has further impact on how you feel during the day.
Stage #2: Anger
What Other Parents are Saying:
"At first I was very angry and bitter, and I blamed God. I have since learned to adjust to my son's disabilities. Never will I accept them, but I will continually adjust."
-From Children with Visual Impairments
Anger is the next stage in the grief process and you may surprise yourself with your willingness to assign blame for your child's condition! Blaming yourself, your partner, your prenatal care, your post natal care, your housing conditions, your mother's "little drink problem," that spray you used on the cat, all allows you to indulge in a search for a reason that has little to do with informing yourself about your child's condition and lots to do with an atavistic need for a scapegoat.
The "why me" question can exhaust you looking for answers and more often than not the only answer you are ever likely to get is "why not you?" "Why did God forsake me?" you may ask, but God did not forsake you—you had a baby with special needs!
Does it really matter how your baby came by the condition? Will it help if you finally track down every last member of your husbands' family in order to prove to him that it must have "come from his side?"
Will your baby be blind regardless of How's and Why's? The distraction of the anger phase can give you useful time and motivation that you need to let others know what's happening with your child.
If you feel you have to say to your family or your neighbors or the postman "My baby is blind because my nogoodnik husband has a genetic weakness" then fine. When you remember saying that next year you may be embarrassed, but at least today the information is out there and you are starting to deal with it—after a fashion!
Blaming yourself can be the beginning of a lifelong relationship with guilt. This will not enhance your relationship with your child or with the rest of your family, so work through your feelings about blame with a view to getting rid of them. They will not help and in the long term these feelings will be damaging—to everyone—if they are left unchallenged.
Stage #3: Bargaining
What Other Parents are Saying:
"I know Jason has delays—I just keep expecting them to go away. I wonder what I have done wrong that he still has these delays."
-From Children with Visual Impairments
This is the fanciful part of grieving! You may not be sure who you are bargaining with but very often as parents we come to a position I think of as "negotiating with the cosmos." Are any of these statements familiar to you?:
• We are hoping that she's not so badly affected (by whatever).
• The doctors say it is a very mild case.
• Scientists are searching for a cure; they are very hopeful.
• He's affected to this degree; we couldn't have coped if it had been worse.
This can bring a subtle skewing of your ability to see the facts as they are. If you entrench yourself in the position that you can cope with, say, blindness but not blindness and deafness, are you truly open to seeing your child for who she is? Negotiating with an apparently silent deity or universe is a facet of bargaining that can leave you with a profound feeling of isolation, but being aware of what you are experiencing and knowing that it is finite often helps.
Bargaining can often, too, lead to a false perception of acceptance. One mother I know had found a way to protect her child with albinism: by not taking him out during daylight hours. Certainly, by treating her son, not as having albinism, but, more disturbingly to my mind, as though he had vampirism, she had come to a bargained accommodation with the facts. He could not be burned by the sun if he was never exposed to it and that was the current amount that this mother was able to accept. It is readily apparent though, that this was not a situation that could go unchallenged indefinitely, for anyone's sake.
Stage #4: Depression
What Other Parents are Saying:
"After a few tries of going to the store or to church, I just stopped. I couldn't stand how people looked at my baby (or at me)."
-From Children with Visual Impairments
Depression also can make an appearance whilst you are coming to terms with your grief. You will be aware that there is far more to dealing well with depression than I can write about here. So if you are currently suffering from the effects of depressive illness GET MEDICAL HELP! That you should deal with it is absolutely paramount.
You may feel that there is no reason for you to be depressed, you had a child; no-one died. It is reasonable to say, however, that you are grieving for the child you expected to have; no parent starts out thinking "I hope my child will be blind." That would be ludicrous, so when your child is diagnosed as blind (and everyone hopes fervently for another outcome) there is a kind of bereavement.
You have every right to grieve: for your hopes, for the trauma you have been through, and for your child and the limitations this condition gives him.
There is an unexpected positive to be seen in depression, paradoxically, because this is the immediate forerunner of acceptance and means that you have accepted the facts of your child's condition, at least to some extent (or why else would you be depressed?).
Stage #5: Acceptance
What Other Parents are Saying:
"From my child, I have learned to love unconditionally. My life has been opened up to include experiences I never would have considered."
-From Children with Visual Impairments
This will come. You will accept a new reality for yourself and your family. You will come to visualize a viable new way forward, embracing the new reality and accepting the burden of the work that lies ahead.
For my part, I spent a short time in a mini-phase of Trying it on for Size, also known as Inappropriate Disclosure. I have a vivid recollection of telling the manager of my local Gecko! Shop that I would be unable to buy one of his fine animals because my baby had been born blind!!!
Neither then nor now have I ever had any desire to own a reptile so exactly what I was thinking escapes me (not to mention the fact that I'm sure a blind child could handle a lizard just as well as a sighted one), but I will give myself credit for imaginative thinking when it comes down to identifying those people who comprise my community!
Moving Forward for Yourself & Your Family
What Other Parents are Saying:
"I don't think my husband and I have been on the same wavelength since our daughter was born. It seems like one of us is always up, while the other is down. Sometimes I think he's being unrealistically optimistic, and sometimes he thinks the same of me."
-From Children with Visual Impairments
Not everyone goes through the grieving process, and not everyone who does go through it goes through it in the order I have described nor even always has each part of the process. It is an entirely individual experience and is as valid in its differences as it is in its similarities.
This can be particularly difficult for married couples who find themselves on opposite ends of the grieving process. The incidence of divorce in families with disabled children is exceptionally high, partly due to the obvious stressors and pressures of having a disabled child, but also partly because both parents may be experiencing the grieving process in unique and individual ways and unable to offer each other the love and support they need. Dealing with the grieving process head on will not only benefit yourself and you child, but also your marriage!
The reason for this article's title is to help you look at where you are in the process and how you are behaving towards yourself. Get a coffee in a quiet moment and think—When did you last show yourself any tenderness, any charity? Try to be more gentle with yourself; there is no "blinding catharsis," but acceptance will come. Just when you least expect it, you'll get what you least expect!
Sunday, May 13, 2012
our eyes aa re blessing
Childrens’ eye health
Healthy eyes and vision are a critical part of kids' development. Their eyes should be examined regularly, as many vision problems and eye diseases can be detected and treated early.
Eye Doctors
Be sure to make vision care and eye checks a part of your child's routine medical care.
Different kinds of doctors offer eye care, and the names can be confusing:
Ophthalmologists are medical doctors (have gone to medical school) who provide comprehensive eye care with medicine and surgery.
Pediatric ophthalmologists have additional special training to treat kids' eye problems.
Optometrists provide services that may be similar to ophthalmologists, but they don't perform surgery. Some optometrists specialize in kids' eye problems.
Opticians fit and adjust eyeglasses.
Eye Exams
Routine medical exams for kids' vision include:
Newborns should be checked for general eye health by a pediatrician or family physician in the hospital nursery.
High-risk newborns (including premature infants), those with a family history of eye problems, and those with obvious eye irregularities should be examined by an eye doctor.
In the first year of life, all infants should be routinely screened for eye health during checkups with their pediatrician or family doctor.
Around age 3½, kids should undergo eye health screenings and visual acuity tests (or tests that measure sharpness of vision) with their pediatrician or family doctor.
Around age 5, kids should have their vision and eye alignment evaluated by their doctors. Those who fail either test should be examined by their pediatrician or family doctor.
After age 5, further routine screenings should be done at school or the doctor's office, or after the appearance of symptoms such as squinting or frequent headaches. (Many times, a teacher will realize the child isn't seeing well in class.)
Kids who wear prescription glasses or contacts should have annual checkups by an eye doctor to screen for vision changes.
Spotting Eye Problems
Signs that a child may have vision problems include:
constant eye rubbing
extreme light sensitivity
poor focusing
poor visual tracking (following an object)
abnormal alignment or movement of the eyes (after 6 months of age)
chronic redness of the eyes
chronic tearing of the eyes
a white pupil instead of black
In school-age children, watch for other signs such as:
inability to see objects at a distance
inability to read the blackboard
squinting
difficulty reading
sitting too close to the TV
Watch your child for evidence of poor vision or crossed eyes. If you notice any eye problems, have your child examined immediately so that the problem doesn't become permanent.
If caught early, eye conditions often can be reversed.
Common Eye Problems
Several eye conditions can affect kids. Most are detected by a vision screening using an acuity chart during the preschool years.
Amblyopia ("lazy eye") is poor vision in an eye that may appear to be normal. Two common causes are crossed eyes and a difference in the refractive error between the two eyes. If untreated, amblyopia can cause irreversible visual loss in the affected eye. (By then, the brain's "programming" will ignore signals from that eye.) Amblyopia is best treated during the preschool years.
Strabismus is a misalignment of the eyes; they may turn in, out, up, or down. If the same eye is chronically misaligned, amblyopia may also develop in that eye. With early detection, vision can be restored by patching the properly aligned eye, which forces the misaligned one to work. Surgery or specially designed glasses also may help the eyes to align.
Refractive errors mean that the shape of the eye doesn't refract, or bend, light properly, so images appear blurred. Refractive errors also can cause amblyopia. Nearsightedness is the most common refractive error in school-age children; others include farsightedness and astigmatism:
o Nearsightedness is poor distance vision (also called myopia), which is usually treated with glasses or contacts.
o Farsightedness is poor near vision (also called hyperopia), which is usually treated with glasses or contacts.
o Astigmatism is imperfect curvature of the front surface of the eye, which is usually treated with glasses if it causes blurred vision or discomfort.
Other eye conditions require immediate attention, such as retinopathy of prematurity (a disease that affects the eyes of premature babies) and those associated with a family history, including:
Retinoblastoma is a malignant tumor that usually appears in the first 3 years of life. The affected eye or eyes may have visual loss and whiteness in the pupil.
Infantile cataracts can occur in newborns. A cataract is a clouding of the eye's lens.
Congenital glaucoma in infants is a rare condition that may be inherited. It is the result of incorrect or incomplete development of the eye drainage canals before birth and can be treated with medication and surgery.
Genetic or metabolic diseases of the eye, such as inherited disorders that make a child more likely to develop retinoblastoma or cataracts, may require kids to have eye exams at an early age and regular screenings.
Be sure to talk to your doctor if your child is at risk for any of these conditions.
Glasses and Contacts
Kids of all ages — even babies — can wear glasses and contacts.
Keep these tips in mind for kids who wear glasses:
Allow kids to pick their own frames.
Plastic frames are best for children younger than 2.
If older kids wear metal frames, make sure they have spring hinges, which are more durable.
An elastic strap attached to the glasses will help keep them in place for active toddlers.
Kids with severe eye problems may need special lenses called high-index lenses, which are thinner and lighter than plastic lenses.
Polycarbonate lenses are recommended for all kids, especially for kids who play sports. Polycarbonate is a tough, shatter-proof, transparent thermoplastic used to make thin, light lenses. However, although they're very impact-resistant, these lenses scratch more easily than plastic lenses.
Infants born with congenital cataracts may need to have their cataracts surgically removed during the first few weeks of life. Some children born with cataracts wear contact lenses after cataract surgery.
Around age 10, kids may express a desire to get contact lenses for cosmetic reasons or convenience if they play sports. Allowing a child to wear contacts depends on his or her ability to insert and remove lenses properly, faithfully take them out as required, and clean them as recommended by the doctor. Contact lens problems are almost always caused by poor habits and bad hygiene.
Your eye doctor can help you decide what type of vision correction is best for your child.
Reviewed by: Jonathan H. Salvin, MD
Date reviewed: January 2011
Healthy eyes and vision are a critical part of kids' development. Their eyes should be examined regularly, as many vision problems and eye diseases can be detected and treated early.
Eye Doctors
Be sure to make vision care and eye checks a part of your child's routine medical care.
Different kinds of doctors offer eye care, and the names can be confusing:
Ophthalmologists are medical doctors (have gone to medical school) who provide comprehensive eye care with medicine and surgery.
Pediatric ophthalmologists have additional special training to treat kids' eye problems.
Optometrists provide services that may be similar to ophthalmologists, but they don't perform surgery. Some optometrists specialize in kids' eye problems.
Opticians fit and adjust eyeglasses.
Eye Exams
Routine medical exams for kids' vision include:
Newborns should be checked for general eye health by a pediatrician or family physician in the hospital nursery.
High-risk newborns (including premature infants), those with a family history of eye problems, and those with obvious eye irregularities should be examined by an eye doctor.
In the first year of life, all infants should be routinely screened for eye health during checkups with their pediatrician or family doctor.
Around age 3½, kids should undergo eye health screenings and visual acuity tests (or tests that measure sharpness of vision) with their pediatrician or family doctor.
Around age 5, kids should have their vision and eye alignment evaluated by their doctors. Those who fail either test should be examined by their pediatrician or family doctor.
After age 5, further routine screenings should be done at school or the doctor's office, or after the appearance of symptoms such as squinting or frequent headaches. (Many times, a teacher will realize the child isn't seeing well in class.)
Kids who wear prescription glasses or contacts should have annual checkups by an eye doctor to screen for vision changes.
Spotting Eye Problems
Signs that a child may have vision problems include:
constant eye rubbing
extreme light sensitivity
poor focusing
poor visual tracking (following an object)
abnormal alignment or movement of the eyes (after 6 months of age)
chronic redness of the eyes
chronic tearing of the eyes
a white pupil instead of black
In school-age children, watch for other signs such as:
inability to see objects at a distance
inability to read the blackboard
squinting
difficulty reading
sitting too close to the TV
Watch your child for evidence of poor vision or crossed eyes. If you notice any eye problems, have your child examined immediately so that the problem doesn't become permanent.
If caught early, eye conditions often can be reversed.
Common Eye Problems
Several eye conditions can affect kids. Most are detected by a vision screening using an acuity chart during the preschool years.
Amblyopia ("lazy eye") is poor vision in an eye that may appear to be normal. Two common causes are crossed eyes and a difference in the refractive error between the two eyes. If untreated, amblyopia can cause irreversible visual loss in the affected eye. (By then, the brain's "programming" will ignore signals from that eye.) Amblyopia is best treated during the preschool years.
Strabismus is a misalignment of the eyes; they may turn in, out, up, or down. If the same eye is chronically misaligned, amblyopia may also develop in that eye. With early detection, vision can be restored by patching the properly aligned eye, which forces the misaligned one to work. Surgery or specially designed glasses also may help the eyes to align.
Refractive errors mean that the shape of the eye doesn't refract, or bend, light properly, so images appear blurred. Refractive errors also can cause amblyopia. Nearsightedness is the most common refractive error in school-age children; others include farsightedness and astigmatism:
o Nearsightedness is poor distance vision (also called myopia), which is usually treated with glasses or contacts.
o Farsightedness is poor near vision (also called hyperopia), which is usually treated with glasses or contacts.
o Astigmatism is imperfect curvature of the front surface of the eye, which is usually treated with glasses if it causes blurred vision or discomfort.
Other eye conditions require immediate attention, such as retinopathy of prematurity (a disease that affects the eyes of premature babies) and those associated with a family history, including:
Retinoblastoma is a malignant tumor that usually appears in the first 3 years of life. The affected eye or eyes may have visual loss and whiteness in the pupil.
Infantile cataracts can occur in newborns. A cataract is a clouding of the eye's lens.
Congenital glaucoma in infants is a rare condition that may be inherited. It is the result of incorrect or incomplete development of the eye drainage canals before birth and can be treated with medication and surgery.
Genetic or metabolic diseases of the eye, such as inherited disorders that make a child more likely to develop retinoblastoma or cataracts, may require kids to have eye exams at an early age and regular screenings.
Be sure to talk to your doctor if your child is at risk for any of these conditions.
Glasses and Contacts
Kids of all ages — even babies — can wear glasses and contacts.
Keep these tips in mind for kids who wear glasses:
Allow kids to pick their own frames.
Plastic frames are best for children younger than 2.
If older kids wear metal frames, make sure they have spring hinges, which are more durable.
An elastic strap attached to the glasses will help keep them in place for active toddlers.
Kids with severe eye problems may need special lenses called high-index lenses, which are thinner and lighter than plastic lenses.
Polycarbonate lenses are recommended for all kids, especially for kids who play sports. Polycarbonate is a tough, shatter-proof, transparent thermoplastic used to make thin, light lenses. However, although they're very impact-resistant, these lenses scratch more easily than plastic lenses.
Infants born with congenital cataracts may need to have their cataracts surgically removed during the first few weeks of life. Some children born with cataracts wear contact lenses after cataract surgery.
Around age 10, kids may express a desire to get contact lenses for cosmetic reasons or convenience if they play sports. Allowing a child to wear contacts depends on his or her ability to insert and remove lenses properly, faithfully take them out as required, and clean them as recommended by the doctor. Contact lens problems are almost always caused by poor habits and bad hygiene.
Your eye doctor can help you decide what type of vision correction is best for your child.
Reviewed by: Jonathan H. Salvin, MD
Date reviewed: January 2011
Tuesday, May 8, 2012
Sunday, May 6, 2012
visually impaired babies
Let us imagine what it is to be like a nine-month old baby who is blind. As the baby lies on it's tummy they are aware of many sensations. The baby can feel the floor moving beneath as a person walks past and vibrations through their hands, knees, tummy and head. They feel the gust of air from movements and when a door is opened or closed.
The baby hears sounds, some soft, some loud. While some sounds come from the same place others move and become louder or softer.
Smells are different and can remind the baby of people, food or different things like clothing and toys.
Tastes are different too. A toy is put into their hand, they chew it. As they place their face into the carpet they taste it. As a child explores, food, hands and objects all taste differently.
When they feel objects some things are hard and soft. Like the leg of a chair some are furry, others smooth, warm, cold or rough.
They are aware of movement by themselves and by others, sometimes suddenly. If another toddler stumbles over them, if a noisy toy is put into their hands or if they are lifted too quickly, this can be scary.
Gradually things will begin to make sense. When a baby hears a mother's voice, they are reassured. However, when they hear a different voice, they do not know what will happen. Some people will feel familiar and safe, while others are strange. They begin to learn when placed in a high chair, food is not far away. When they hear water running, smell the familiar smells of the bathroom and hear the word "bath" they know what is to come.
So even without sight, they are learning to anticipate what will happen next and now feel secure in certain situations. They will be able to connect words and sounds with actions and objects. However while they are receiving all these sensations, they are still unaware of much around them. There may be toys near by, but if they don't touch them they may never know where they are. A baby may be unaware that they are lying near table legs, that they are facing a certain direction or that their dummy, which they want desperately, is just out of reach.
In order to help the baby make sense of their surroundings, we must encourage sensory exploration to help them learn. We must give them meaning and the opportunity to find out about those things of which they are unaware.
The first step security
The world of a baby who is blind can be confusing, but we can help them feel secure in a number of ways by giving cues or warnings that something is about to happen. Before picking a baby up, we might gently grasp their hands and say "up you come", to prepare them. Touching their lip or cheek gently before food or a spoon is put into their mouth will let them know they are about to eat. If you approach them gradually, talking to the baby as you near, they will not be startled. By splashing their feet and legs gently with water before putting them into to bath they will be prepared for the sudden change and temperature.
Language is central to helping a baby feel secure. We can talk about what is happening, and what will happen to them, as well as what they are touching, smelling, hearing and tasting. By using language we are helping them discover which words go with which particular action or object. If we use their name frequently, they will gradually learn that it applies to them, and if we use it at the beginning of a sentence it will help them to 'tune in' to us and they will learn that what is being said is directed to them.
It is not always easy to talk to babies and knowing exactly what to say to a baby can be a problem. For a baby who is blind it is best to talk about what is happening to them. You might talk about the sensations they are receiving such as:
"You're sitting on Daddy's knees, can you feel me bouncing up and down?", "You're in the bath, smell the soap";
"You're holding the washer in your hand";
"Can you hear Mummy coming into the room";
"It feels warm"
This type of language soon becomes second nature to parents and they become "interpreters" for their child, telling them about the world, helping them to learn and feel more secure.
Encouraging curiosity
Sighted children learn mostly because they are curious about objects that they can see. Children who are blind are unable to see interesting things to grasp and will not develop curiosity about objects unless they are in direct physical contact or encouraged to do so. A nine-month old baby who is blind is unlikely to reach for something that makes a noise, no matter how interesting it may sound. If they drop a favourite toy, they are unlikely to search for it. However, if through touch they are given the slightest clue as to where it is, they will grasp it quickly. A child who is blind can appear uninterested and lacking in curiosity, even though they may be listening intently to what is happening around them. To reach the stage where they will reach to sound and search for objects, they must be given experiences to encourage their curiosity.
Ways to encourage curiosity
Babies must first know their surroundings and that there are things outside their own body to experience. We can do this by bringing the world to them and by introducing them to things. For example, we can ensure that the baby is in frequent contact with toys by placing them near their body. When they move, chances will increase that they will touch something interesting. If toys are placed near their feet, they will learn that things happen 'down there' as well as near their hands.
We can give the baby a variety of experiences to show them the world is full of wonderful and various objects. This can include different:
Textures - such as soft or hard floors, sticky things, rough or smooth rugs and towels, scratchy, wet or dry surfaces;
Tastes - sweet, salty, sour, strong, bland;
Sizes big and small toys;
Sounds loud, soft, sharp, melodious, harsh, fast or slow;
Smells flowers, floor polish, soap, food.
Again, language is crucial in providing the framework on which a child can understand these experiences.
Learning through feedback
Instant and continuous feedback is essential in any learning to understand the effects of actions. For a child who is blind, feedback through language is essential. When a baby drops their rattle, they hear it, but unless we tell them what has happened, it will not make sense. We need to tell them when the food bowl is empty and they have eaten the last spoonful, that they are making the bell ring when they shake it and that the ball has rolled away when they throw it.
We can also encourage them to try new tasks and to practice skills simply by praising them and making them feel good.
Sighted children gain considerable feedback from facial expressions and gestures. A child who is blind must rely on what is said, how it is said and physical touch to sum up other peoples' moods and meaning. As well as keeping them in touch by words, it is useful to 'over act', to give emphasis to what is said. By giving a big hug and saying "that was wonderful", this means as much as a smile and a quiet "well done".
Feedback is a two way process and we react to children who are blind on the cues they give us. Babies and children who are blind do not react in the same way as sighted children to some situations. Rather than turn their eyes to a sound, they may turn their ear, or keep very still, listening intently.
Babies may not smile at first to a parent's voice or touch, but with time may learn to do so. When they realise that there are things 'out there', our baby's hands may make tentative, small movements, telling us that they are beginning to reach out. It is important that we learn to read these messages so that we can interpret them to increase learning.
Learning about themselves
We take for granted that out bodies have certain parts which all fit together that we can see. Children who are blind need to learn about their bodies and this can begin at birth. By nursing and rocking the child, they begin to learn what their body feel like. Massage can also draw attention to the different parts of their body and if we talk about what we are doing, they will learn even faster. As we dress and undress them, we can talk about the different body parts. Songs and rhymes about body parts can assist with remembering. We can also show them that we too have parts, like them.
Babies also need to learn where they are in space. Sometimes they are on the floor, or held up high in someone's arms. We can play games in which they are 'low' or 'high'. As they get older, we can show them that can fit through some spaces, but not through others or that they can fit their whole body in some spaces but only feet in others. We can orientate them with how a room is arranged, what is in it and how to get from one room to another. It is important that we talk to them about what they are experiencing so that they can attach meaning to what is happening.
Putting it all together: language and experience
Experiences alone are not enough. By giving the child the associated language for what is happening they can better interpret actions and surroundings. For example a sighted child can use their vision and senses they hear a noise, turn to see what caused it; see their brother with a sad face standing over a broken dish and their mother running from another room. They are able to use vision to make sense of this experience, however this must be verbalised or described to a child who is blind.
Actions and objects need to be placed in context as well as described to give true meaning. We might talk to a child daily about Daddy going to work on a train, however if the child has never experiences the train or does not know what it is, it will not be understood.
Television and radio can be another example. While babies and children may like TV and radio sounds unless understood they can be meaningless and confusing as background noise. At an early age it is better to focus on noises and sounds which they can experience personally linked to sensory development.
The most valuable communication with a child who is blind is grounded in experience, linked with what they are doing or happening to them here and now.
Linking experiences and language needs to be ongoing. Unlike sighted children who can use their vision to prompt their memories, children who are blind need frequent repetition of experiences with language to enable them to build up a picture of their world.
The baby hears sounds, some soft, some loud. While some sounds come from the same place others move and become louder or softer.
Smells are different and can remind the baby of people, food or different things like clothing and toys.
Tastes are different too. A toy is put into their hand, they chew it. As they place their face into the carpet they taste it. As a child explores, food, hands and objects all taste differently.
When they feel objects some things are hard and soft. Like the leg of a chair some are furry, others smooth, warm, cold or rough.
They are aware of movement by themselves and by others, sometimes suddenly. If another toddler stumbles over them, if a noisy toy is put into their hands or if they are lifted too quickly, this can be scary.
Gradually things will begin to make sense. When a baby hears a mother's voice, they are reassured. However, when they hear a different voice, they do not know what will happen. Some people will feel familiar and safe, while others are strange. They begin to learn when placed in a high chair, food is not far away. When they hear water running, smell the familiar smells of the bathroom and hear the word "bath" they know what is to come.
So even without sight, they are learning to anticipate what will happen next and now feel secure in certain situations. They will be able to connect words and sounds with actions and objects. However while they are receiving all these sensations, they are still unaware of much around them. There may be toys near by, but if they don't touch them they may never know where they are. A baby may be unaware that they are lying near table legs, that they are facing a certain direction or that their dummy, which they want desperately, is just out of reach.
In order to help the baby make sense of their surroundings, we must encourage sensory exploration to help them learn. We must give them meaning and the opportunity to find out about those things of which they are unaware.
The first step security
The world of a baby who is blind can be confusing, but we can help them feel secure in a number of ways by giving cues or warnings that something is about to happen. Before picking a baby up, we might gently grasp their hands and say "up you come", to prepare them. Touching their lip or cheek gently before food or a spoon is put into their mouth will let them know they are about to eat. If you approach them gradually, talking to the baby as you near, they will not be startled. By splashing their feet and legs gently with water before putting them into to bath they will be prepared for the sudden change and temperature.
Language is central to helping a baby feel secure. We can talk about what is happening, and what will happen to them, as well as what they are touching, smelling, hearing and tasting. By using language we are helping them discover which words go with which particular action or object. If we use their name frequently, they will gradually learn that it applies to them, and if we use it at the beginning of a sentence it will help them to 'tune in' to us and they will learn that what is being said is directed to them.
It is not always easy to talk to babies and knowing exactly what to say to a baby can be a problem. For a baby who is blind it is best to talk about what is happening to them. You might talk about the sensations they are receiving such as:
"You're sitting on Daddy's knees, can you feel me bouncing up and down?", "You're in the bath, smell the soap";
"You're holding the washer in your hand";
"Can you hear Mummy coming into the room";
"It feels warm"
This type of language soon becomes second nature to parents and they become "interpreters" for their child, telling them about the world, helping them to learn and feel more secure.
Encouraging curiosity
Sighted children learn mostly because they are curious about objects that they can see. Children who are blind are unable to see interesting things to grasp and will not develop curiosity about objects unless they are in direct physical contact or encouraged to do so. A nine-month old baby who is blind is unlikely to reach for something that makes a noise, no matter how interesting it may sound. If they drop a favourite toy, they are unlikely to search for it. However, if through touch they are given the slightest clue as to where it is, they will grasp it quickly. A child who is blind can appear uninterested and lacking in curiosity, even though they may be listening intently to what is happening around them. To reach the stage where they will reach to sound and search for objects, they must be given experiences to encourage their curiosity.
Ways to encourage curiosity
Babies must first know their surroundings and that there are things outside their own body to experience. We can do this by bringing the world to them and by introducing them to things. For example, we can ensure that the baby is in frequent contact with toys by placing them near their body. When they move, chances will increase that they will touch something interesting. If toys are placed near their feet, they will learn that things happen 'down there' as well as near their hands.
We can give the baby a variety of experiences to show them the world is full of wonderful and various objects. This can include different:
Textures - such as soft or hard floors, sticky things, rough or smooth rugs and towels, scratchy, wet or dry surfaces;
Tastes - sweet, salty, sour, strong, bland;
Sizes big and small toys;
Sounds loud, soft, sharp, melodious, harsh, fast or slow;
Smells flowers, floor polish, soap, food.
Again, language is crucial in providing the framework on which a child can understand these experiences.
Learning through feedback
Instant and continuous feedback is essential in any learning to understand the effects of actions. For a child who is blind, feedback through language is essential. When a baby drops their rattle, they hear it, but unless we tell them what has happened, it will not make sense. We need to tell them when the food bowl is empty and they have eaten the last spoonful, that they are making the bell ring when they shake it and that the ball has rolled away when they throw it.
We can also encourage them to try new tasks and to practice skills simply by praising them and making them feel good.
Sighted children gain considerable feedback from facial expressions and gestures. A child who is blind must rely on what is said, how it is said and physical touch to sum up other peoples' moods and meaning. As well as keeping them in touch by words, it is useful to 'over act', to give emphasis to what is said. By giving a big hug and saying "that was wonderful", this means as much as a smile and a quiet "well done".
Feedback is a two way process and we react to children who are blind on the cues they give us. Babies and children who are blind do not react in the same way as sighted children to some situations. Rather than turn their eyes to a sound, they may turn their ear, or keep very still, listening intently.
Babies may not smile at first to a parent's voice or touch, but with time may learn to do so. When they realise that there are things 'out there', our baby's hands may make tentative, small movements, telling us that they are beginning to reach out. It is important that we learn to read these messages so that we can interpret them to increase learning.
Learning about themselves
We take for granted that out bodies have certain parts which all fit together that we can see. Children who are blind need to learn about their bodies and this can begin at birth. By nursing and rocking the child, they begin to learn what their body feel like. Massage can also draw attention to the different parts of their body and if we talk about what we are doing, they will learn even faster. As we dress and undress them, we can talk about the different body parts. Songs and rhymes about body parts can assist with remembering. We can also show them that we too have parts, like them.
Babies also need to learn where they are in space. Sometimes they are on the floor, or held up high in someone's arms. We can play games in which they are 'low' or 'high'. As they get older, we can show them that can fit through some spaces, but not through others or that they can fit their whole body in some spaces but only feet in others. We can orientate them with how a room is arranged, what is in it and how to get from one room to another. It is important that we talk to them about what they are experiencing so that they can attach meaning to what is happening.
Putting it all together: language and experience
Experiences alone are not enough. By giving the child the associated language for what is happening they can better interpret actions and surroundings. For example a sighted child can use their vision and senses they hear a noise, turn to see what caused it; see their brother with a sad face standing over a broken dish and their mother running from another room. They are able to use vision to make sense of this experience, however this must be verbalised or described to a child who is blind.
Actions and objects need to be placed in context as well as described to give true meaning. We might talk to a child daily about Daddy going to work on a train, however if the child has never experiences the train or does not know what it is, it will not be understood.
Television and radio can be another example. While babies and children may like TV and radio sounds unless understood they can be meaningless and confusing as background noise. At an early age it is better to focus on noises and sounds which they can experience personally linked to sensory development.
The most valuable communication with a child who is blind is grounded in experience, linked with what they are doing or happening to them here and now.
Linking experiences and language needs to be ongoing. Unlike sighted children who can use their vision to prompt their memories, children who are blind need frequent repetition of experiences with language to enable them to build up a picture of their world.
Subscribe to:
Posts (Atom)
