Summer camp grows great kids! Why? They have to learn a lot of skills - like paying attention to people who are older than them but not quite adults, like how far away the bathroom is in relation to when they need to use it, like keeping track of their own stuff, like that there are worse things than mosquitoes, although we still haven't figured out why God invented them in the first place, that nature, regardless of our opinions on things like mosquitoes, needs to be respected, and that even if someone in our cabin is REALLY annoying, we have to work together if we want the clean cabin award.
Summer camp grows great kids - and if your child is blind or visually impaired or has other disabilities, it is even more important for THEM to go to camp than for your sighted children. It is sometimes hard to find the right camp, but it is good for them - and for you as parents - to be away from each other for a while. For some families, finding the right camp means the camp where their child will be allowed to do more for themselves than they do at home - those are families whose adults and older siblings and sometimes even younger siblings just LOVE to do stuff FOR the blind child in the family. Or maybe it just became a habit, because blind children don't "see what needs to be done". While it may be gratifying for you, it really doesn't foster independence in your child! (Just so you know, my son is chopping rhubarb and strawberries for pie even as I write this!). For some families, it gives your child the chance to be pampered more than you would like, and if your child doesn't like it, then they have to figure out how to politely advocate for themselves! A little pampering is OK, but you really do want to impress upon the staff how much your child CAN do for him or herself!
There are a number of camps that "take" blind children, but only a few which really are designed FOR blind children. Our church camp loved having both of our kids at camp, and they have been going nearly every year since they were 5 years old. This is more of a pampering camp! But both of our kids went with us to Family Camp at Camp Tuhsmeheta, a camp for blind and visually impaired children near Greenville, MI when Greg was two and Krista was only 7 months old. We have been attending there as a family and Greg has attended many times, ever since. This is a camp that really focuses on building life skills. Greg also attended Bear Lake Camp near Lapeer, MI one summer, and a lot of kids really like that one, too. Baycliff, near Marquette in the Upper Peninsula, has a fantastic reputation, especially for kids with multiple impairments. We have our hearts set on Camp T, but I would continue to encourage you to look at all your options and find the one that's best for you and your child.
If money is an issue (isn't it always?), and you qualify for free or reduced lunch for your children in school, or if you have a Bridge card, the Michigan Department of Education Low Incidence Outreach can, in most cases, provide scholarships. You can find them at msdb-outreach@michigan.gov.
Monday, May 23, 2011
Friday, May 20, 2011
Summer in Michigan - the Beaches are Calling!
So, we're going to get outdoors more, and there really is no better place to be in Michigan than on the beach! Beaches come in many shapes and sizes, around small lakes, man-made lakes, man-made beaches or on the shores of any of the lakes surrounding our state. Besides, a trip to the beach is pretty cheap compared to going to a movie or waterpark.
Every child who is even somewhat able bodied needs to learn to swim. Unless there are medical issues why a child cannot be immersed in water , I believe water is good for every child, and that every child needs to feel comfortable in the water and know what to do if they suddenly find themselves in it. But going to the beach is totally for fun!
By now you have probably heard all the warnings about needing to wear enough sunscreen, reapplying it every two hours, and that all kids should wear full life jackets (and not those little water wings unless under direct adult supervision), and that you need to keep your picnic lunch cold to prevent food poisoning, never swim when the red warning flag is flying (indicating dangerous riptides) and all that. So I won't go over those details. What I will tell you is that, in the water or on the shore, there is almost nothing in the world that is more equalizing for children who are blind or visually impaired and their sighted peers than a lot of water and sand to go with it!
Other than not being very good at tossing beach balls or footballs or other floating toys to each other, blind children and sighted children will both find themselves doing the same things - building "something" in the sand, jumping in the waves (if your lake is big enough for waves) to get rinsed off, telling themselves pirate stories, playing "king of the ________ (flotation device of your choice), getting tossed into the water by their moms or dads or big brothers, learning to float, learning to propel themselves and eventually learning to swim. Try it! Build it! Smash it! Flood it! This is life on the beach, and, as long as you don't come home looking like a lobster, it will be a good time for everyone!
FYI - yes, blind people can learn to water ski. If you wonder how, just ask Jordyn Castor! What about sailing? Ask Scott Ford, or send your child to sailing camp with Camp Tuhsmeheta this summer!
Every child who is even somewhat able bodied needs to learn to swim. Unless there are medical issues why a child cannot be immersed in water , I believe water is good for every child, and that every child needs to feel comfortable in the water and know what to do if they suddenly find themselves in it. But going to the beach is totally for fun!
By now you have probably heard all the warnings about needing to wear enough sunscreen, reapplying it every two hours, and that all kids should wear full life jackets (and not those little water wings unless under direct adult supervision), and that you need to keep your picnic lunch cold to prevent food poisoning, never swim when the red warning flag is flying (indicating dangerous riptides) and all that. So I won't go over those details. What I will tell you is that, in the water or on the shore, there is almost nothing in the world that is more equalizing for children who are blind or visually impaired and their sighted peers than a lot of water and sand to go with it!
Other than not being very good at tossing beach balls or footballs or other floating toys to each other, blind children and sighted children will both find themselves doing the same things - building "something" in the sand, jumping in the waves (if your lake is big enough for waves) to get rinsed off, telling themselves pirate stories, playing "king of the ________ (flotation device of your choice), getting tossed into the water by their moms or dads or big brothers, learning to float, learning to propel themselves and eventually learning to swim. Try it! Build it! Smash it! Flood it! This is life on the beach, and, as long as you don't come home looking like a lobster, it will be a good time for everyone!
FYI - yes, blind people can learn to water ski. If you wonder how, just ask Jordyn Castor! What about sailing? Ask Scott Ford, or send your child to sailing camp with Camp Tuhsmeheta this summer!
It's a Beautiful Day! Come out and Play!
There is a book that made quite a splash a few years ago titled Last Child in the Woods: Saving Our Children from Nature Deficit Disorder. I heard about it at a conference for summer camp directors and staff. The author, Richard Louv, in the introduction to his book, quotes Walt Whitman and a fourth grader in San Diego. Whitman's poem is about how, as a child goes about life, whatever they interact with becomes a part of them - whether it be tree or flower or lamb or bird. I suspect that Whitman did not have in mind the quote from the fourth grader, "I like to play indoors better 'cause that's where all the electrical outlets are".
If Whitman is correct, and a child becomes what he is surrounded by, what does that say about our kids' love of video games (with or without video, in the case of our blind and visually impaired children!), internet, TV, and the like. Do our kids "become" those things - most of which are made up by other people's imaginations? What happens to our own children's imaginations when they are "inside where all the electrical outlets are?" Today, with better and better batteries and wireless capability everywhere, kids are more and more taking their "inside" outside with them, wherever they go.
My daughter, who is sighted, can at least look at strange cloud formations, or notice an oddly shaped tree, or see the llama's at this farm or the Belgian Belted cows at another, or fall in love with the way the trees overhang the road as we drive by. This doesn't help her feel the texture of the llama's coat, or smell the warm life of the cows's breath on her neck, but if does give her an idea of what the natural world is like - even if from a distance. Children who are blind or visually impaired cannot do this. Their world ends at their fingertips. Unless, of course, WE intervene and give them the experiences to fill in the gaps in their understanding of the world we live in.
I may have mentioned this before, but when Greg was in second grade, he thought that a turtle and a giraffe would inhabit the same ecosystem. He clearly had forgotten what each animal looked like. Sighted children see photos and plastic animals (that are almost never made "to scale") and stuffed animals and are reminded in many ways what various parts of the world look like, move like, live like. We need to bring our children into the world outside so that they can "see" it for themselves - with their fingers.
I want every parent to know that touching dog poop will not kill your child! It will NOT even make them sick, unless you are too late to keep them from tasting it and do not get it all washed off properly AND it happens to be infected with something nasty that human children are susceptible to. So introduce them to gross things and make sure they understand that those things are gross! Tell them why! Let them find tomato horn worms - and squish them - from your tomato plant that you are growing on your deck. Show them that June bugs, while big and loud and scary, will NOT hurt them, but wasps on the other hand should be given a wide berth. Show them the tiny leaves of the locust tree and the big leaves of the maple or oak, or even better, a catalpa or tulip tree.
I was actually deeply disappointed to discover that leaf collections are no longer part of the curriculum in most school biology classes. Leaf collections are great ways to get kids totally in touch - quite literally - with one of the greatest living lifeforms on this earth. Maybe this summer you can make a leaf collection with your children - and it won't matter if your children are blind or sighted - they will all learn from the process.
If Whitman is correct, and a child becomes what he is surrounded by, what does that say about our kids' love of video games (with or without video, in the case of our blind and visually impaired children!), internet, TV, and the like. Do our kids "become" those things - most of which are made up by other people's imaginations? What happens to our own children's imaginations when they are "inside where all the electrical outlets are?" Today, with better and better batteries and wireless capability everywhere, kids are more and more taking their "inside" outside with them, wherever they go.
My daughter, who is sighted, can at least look at strange cloud formations, or notice an oddly shaped tree, or see the llama's at this farm or the Belgian Belted cows at another, or fall in love with the way the trees overhang the road as we drive by. This doesn't help her feel the texture of the llama's coat, or smell the warm life of the cows's breath on her neck, but if does give her an idea of what the natural world is like - even if from a distance. Children who are blind or visually impaired cannot do this. Their world ends at their fingertips. Unless, of course, WE intervene and give them the experiences to fill in the gaps in their understanding of the world we live in.
I may have mentioned this before, but when Greg was in second grade, he thought that a turtle and a giraffe would inhabit the same ecosystem. He clearly had forgotten what each animal looked like. Sighted children see photos and plastic animals (that are almost never made "to scale") and stuffed animals and are reminded in many ways what various parts of the world look like, move like, live like. We need to bring our children into the world outside so that they can "see" it for themselves - with their fingers.
I want every parent to know that touching dog poop will not kill your child! It will NOT even make them sick, unless you are too late to keep them from tasting it and do not get it all washed off properly AND it happens to be infected with something nasty that human children are susceptible to. So introduce them to gross things and make sure they understand that those things are gross! Tell them why! Let them find tomato horn worms - and squish them - from your tomato plant that you are growing on your deck. Show them that June bugs, while big and loud and scary, will NOT hurt them, but wasps on the other hand should be given a wide berth. Show them the tiny leaves of the locust tree and the big leaves of the maple or oak, or even better, a catalpa or tulip tree.
I was actually deeply disappointed to discover that leaf collections are no longer part of the curriculum in most school biology classes. Leaf collections are great ways to get kids totally in touch - quite literally - with one of the greatest living lifeforms on this earth. Maybe this summer you can make a leaf collection with your children - and it won't matter if your children are blind or sighted - they will all learn from the process.
Monday, May 16, 2011
Are Blind Children "Broken"?
In the wider disability community, it is certainly not acceptable to consider persons with any kind of disability "broken" and in need of fixing. For those of us with unfixable disabilities, that would leave us "broken" forever. No one wants to think of themselves as broken. Yet everyone of us has some sort of disability. Some of us are better at fixing cars or cooking than doing higher level math. Some of us have great eyesight or super hearing or are fantastic athletes, or need glasses or hearing aids or canes or walkers. Some of us can perform great music but are terrible dancers.
Americans are very double minded about what "normal" means. Our media certainly projects the idea that "normal" is a person who has full use of all their physical attributes - two legs, two arms, two eyes, two ears, two kidneys, one heart, two lungs, etc., and has no diseases like diabetes or cancer or even hay fever and is highly attractive besides. If our teeth aren't straight we have to have orthodontics. If our feet aren't straight we need orthotics. But what about our mental capacity, emotional capacity, spiritual capacity? We measure our kids aptitude at academics from the day they enter kindergarten. Do we give the same amount of attention to their artistic ability, or their compassion for others, or their fiestyness to fight for what they believe is right?
In the medical community, however, "fixing" people is what they do. We had a well known and well loved physician talk at our conference last summer, and he spoke a lot about progress in preventing what all of our children already have - blindness or visual impairment! How do our kids see themselves, when others around them are talking about "what they have" as something undesirable?
A lot of press has been given recently to a 13-year-old girl from the Grand Rapids area who faces amputation of one of her legs in the near future, and how she has been playing basketball and is producing artwork with the leg and foot she will soon no longer have. Will she be less of a person when she has only one leg? If she loses the other leg to this disease process, will she be even less of a person? Of course not. But she may never be treated with the same respect as others her age, not because she is losing a leg, but because she also has developmental delays. Her brain isn't "normal". Her personality isn't "normal". Her face, and facial expressions, aren't "normal". Americans particularly are disabled in their ability to think outside the box when it comes to health, well-being and personhood. This young lady is a wonderful person in her own right, regardless of all of the challenges or differences she has.
I think we are fooling ourselves if we think that people with disabilities are "normal". We should not deny a new parent's grief when they discover that their child cannot see or hear or walk or has suffered brain damage. Grief is a completely "normal" emotion when faced with the uncertainty and challenges that such disabilities bring with them. But we are fooling ourselves even more if we think most of us ARE "normal". All of us have had to fit -or not fit - into a niche in society, learned how to use tools that don't really work for us, learned to do things we don't like to do, learned to do things we are not good at. Those of us who get to do the things we are good at and love to do are the ones who are truly blessed, and that should be our goal for all of us - and our children - to create a truly gifted and creative society - a society that can celebrate and find a place for everyone, whatever their attributes, gifts and challenges are.
Americans are very double minded about what "normal" means. Our media certainly projects the idea that "normal" is a person who has full use of all their physical attributes - two legs, two arms, two eyes, two ears, two kidneys, one heart, two lungs, etc., and has no diseases like diabetes or cancer or even hay fever and is highly attractive besides. If our teeth aren't straight we have to have orthodontics. If our feet aren't straight we need orthotics. But what about our mental capacity, emotional capacity, spiritual capacity? We measure our kids aptitude at academics from the day they enter kindergarten. Do we give the same amount of attention to their artistic ability, or their compassion for others, or their fiestyness to fight for what they believe is right?
In the medical community, however, "fixing" people is what they do. We had a well known and well loved physician talk at our conference last summer, and he spoke a lot about progress in preventing what all of our children already have - blindness or visual impairment! How do our kids see themselves, when others around them are talking about "what they have" as something undesirable?
A lot of press has been given recently to a 13-year-old girl from the Grand Rapids area who faces amputation of one of her legs in the near future, and how she has been playing basketball and is producing artwork with the leg and foot she will soon no longer have. Will she be less of a person when she has only one leg? If she loses the other leg to this disease process, will she be even less of a person? Of course not. But she may never be treated with the same respect as others her age, not because she is losing a leg, but because she also has developmental delays. Her brain isn't "normal". Her personality isn't "normal". Her face, and facial expressions, aren't "normal". Americans particularly are disabled in their ability to think outside the box when it comes to health, well-being and personhood. This young lady is a wonderful person in her own right, regardless of all of the challenges or differences she has.
I think we are fooling ourselves if we think that people with disabilities are "normal". We should not deny a new parent's grief when they discover that their child cannot see or hear or walk or has suffered brain damage. Grief is a completely "normal" emotion when faced with the uncertainty and challenges that such disabilities bring with them. But we are fooling ourselves even more if we think most of us ARE "normal". All of us have had to fit -or not fit - into a niche in society, learned how to use tools that don't really work for us, learned to do things we don't like to do, learned to do things we are not good at. Those of us who get to do the things we are good at and love to do are the ones who are truly blessed, and that should be our goal for all of us - and our children - to create a truly gifted and creative society - a society that can celebrate and find a place for everyone, whatever their attributes, gifts and challenges are.
Friday, May 13, 2011
Surprise - Your kid doesn't know how to study!
We recently – very recently – discovered that our son really doesn’t know how to study! He’s been an honor roll student up until last trimester, and, well, we aren’t really sure why the bottom has seemingly dropped out on him. Is it just that the materials are getting harder? I’m not convinced.
I am a substitute teacher, and I have been surprised at how much is “given” to sighted students. With all the text that shows up in bold, as captions under photos and diagrams, in italics, and even highlighted for them, there is little actual work involved in studying. They need only flip through the pages of their ONE VOLUME book and remind themselves of things that are already highlighted there for them. For students who are blind or visually impaired, especially if they are Braille readers, skimming over materials means trying to go over the important parts of 19 or 20 volumes, without any indicators from the book as to what is important to “see” – no bolding or highlighting that can easily be observed by passing fingers. If the course materials are only available in audio or electronic format, it is even more difficult to scan or speed read through the materials to hunt for important bits of information for a test. I believe that up to this point Greg was able to mostly hold the information in his very capable brain, but when faced with a course in which he is not that adept naturally, he can no longer hold the material in memory. He has reached the point where he can no longer compensate for his inability to read print with a great memory.
Your child may “hit the wall” at different times in different subject areas. I am frankly glad Greg hit it while still in high school while we still have a chance to address this missing piece of the academic puzzle. How challenging to face this kind of problem in your last year of college! It is much better to find out now, when resources such as a TCVI are still available to help. For your child, “the wall” may show up in elementary school or in middle school, and likely in math and/or science before it shows up in other areas. Take this as an opportunity to address the issue of note taking, and not as an indication that your child is “dumb”, or doesn’t do well in this subject area. It could be as easy as making their own glossary of important words, or a list of types of problems, to help your child do much better – and to like school, too! It's also another opportunity to be sure that your child is using all the technology available to him or her. I recently discovered (this morning - at Greg's IEP!) that the Braille Sense which is available from the National Library Service can not only download books but also has the abilitiy to highlight and keep notes that you want to save. The iPhones have a ton of great apps that can help your student stay organized. Some schools may even have classes designed to help kids learn good study habits and give them extra time to do their work.
If your child suddenly is struggling, don't put off asking for help - from your child's teacher, VI teacher, school counselor, principal, or from another blind person or another parent of a blind child - for questions on anything from using a spoon and fork to potty training to Calculus and Physics. The most important thing to realize, I think, is that kids need to struggle some, but they also need to know that someone has their back and can help them when they really need it. A child whose school experience is mostly frustration and humiliation will not be able to learn well - instead they will hate school and everything about it. On the other hand, we need teachers to be honest and fair - and not just pass our kids on because they are "special ed". Given the right tools, our kids can succeed in school!
Wednesday, May 11, 2011
Vocal Chord Issues
I promised I would talk about why Greg didn't let us know when he was upset when he was very tiny.
When we finally brought Greg home from the hospital he was about 6 pounds, 10 ounces and was 4 months old. It was late August, so he soon joined his father and me in the church choir loft, where I was the choir director. Of course, for the first anthem of the year we did what we call an "old warhorse" - an anthem that has been around so long that almost every choir in the country has sung it. This one was particularly loud and boisterous, and the organ gets going full blast toward the end of the piece. Greg was in his car seat next to Jim while we sang, hooked up to his apnea monitor and supplemental oxygen. When we finished the anthem - with great flourish, I might add - the beeping of the monitor could be heard in the sudden hush, and there was a palpable collective gasp from the congregation. Panicked, we looked down to discover the little guy was totally red and screaming his lungs out - and making absolutely no sound at all! The monitor had gone off, not because Greg had stopped breathing, but because his heart rate was so high! He was as mad as a hornet about all that noise the choir and organ had just made and he wanted someone to know he did not approve!
Greg didn't really start to talk until well after his third birthday, and he was difficult to hear and had a raspy sounding voice. I thought it was from being intubated for so long - as so many preemies are - but it never really improved. At age 4 I took him to see an ENT (Ear, Nose and Throat specialist) who gave me quite an unexpected diagnosis. He used an anesthetic to numb Greg's nose and passed a fiber optic tube down his nose to right over this vocal chords. (Greg really didn't like this very much, but we did get the job done). Greg's left vocal chord was lying off to one side, completely useless. It was paralyzed. The explanation: Greg had had surgery to close his patent ductus when he was only 9 days old and maybe 3 inches wide! The patent ductus is a valve in all mammals that needs to close to reroute blood once the baby is born. In the womb, the fetus's blood goes one direction, and when born and he begins breathing air, the blood needs to circulate the other way. Often in premature babies this doesn't close on its own, and Greg was a very tiny premature infant. So a thoracic surgeon closed it with a little clip, but had to make an incision along Greg's shoulder blade, in his back, to do it. In the process, he nicked the nerve to his left vocal chord.
The ENT who first diagnosed Greg referred us to another physician in Detroit who put a piece of plastic inside Greg's left vocal chord to make it fat enough to come close to the other vocal chord, making it a lot easier for him to make noise. I had nightmares about this surgery, as you can well imagine! To top it off, the surgeon had only done one other child, and in the middle of Greg's surgery they called us to say they were delayed - they had to get some smaller tools! Still, Greg was eating crackers that evening, and the next day, at a restaurant in Lansing, we had to ask him to "use his inside voice"!
His voice is still raspy and a little airy, but he can sing quite well and loves forensics and debate, so his speaking voice issues have not deterred him in the least. At 17, the surgeon who did the implant feels he won't need another one, so all's well that ends with Greg making himself heard!
When we finally brought Greg home from the hospital he was about 6 pounds, 10 ounces and was 4 months old. It was late August, so he soon joined his father and me in the church choir loft, where I was the choir director. Of course, for the first anthem of the year we did what we call an "old warhorse" - an anthem that has been around so long that almost every choir in the country has sung it. This one was particularly loud and boisterous, and the organ gets going full blast toward the end of the piece. Greg was in his car seat next to Jim while we sang, hooked up to his apnea monitor and supplemental oxygen. When we finished the anthem - with great flourish, I might add - the beeping of the monitor could be heard in the sudden hush, and there was a palpable collective gasp from the congregation. Panicked, we looked down to discover the little guy was totally red and screaming his lungs out - and making absolutely no sound at all! The monitor had gone off, not because Greg had stopped breathing, but because his heart rate was so high! He was as mad as a hornet about all that noise the choir and organ had just made and he wanted someone to know he did not approve!
Greg didn't really start to talk until well after his third birthday, and he was difficult to hear and had a raspy sounding voice. I thought it was from being intubated for so long - as so many preemies are - but it never really improved. At age 4 I took him to see an ENT (Ear, Nose and Throat specialist) who gave me quite an unexpected diagnosis. He used an anesthetic to numb Greg's nose and passed a fiber optic tube down his nose to right over this vocal chords. (Greg really didn't like this very much, but we did get the job done). Greg's left vocal chord was lying off to one side, completely useless. It was paralyzed. The explanation: Greg had had surgery to close his patent ductus when he was only 9 days old and maybe 3 inches wide! The patent ductus is a valve in all mammals that needs to close to reroute blood once the baby is born. In the womb, the fetus's blood goes one direction, and when born and he begins breathing air, the blood needs to circulate the other way. Often in premature babies this doesn't close on its own, and Greg was a very tiny premature infant. So a thoracic surgeon closed it with a little clip, but had to make an incision along Greg's shoulder blade, in his back, to do it. In the process, he nicked the nerve to his left vocal chord.
The ENT who first diagnosed Greg referred us to another physician in Detroit who put a piece of plastic inside Greg's left vocal chord to make it fat enough to come close to the other vocal chord, making it a lot easier for him to make noise. I had nightmares about this surgery, as you can well imagine! To top it off, the surgeon had only done one other child, and in the middle of Greg's surgery they called us to say they were delayed - they had to get some smaller tools! Still, Greg was eating crackers that evening, and the next day, at a restaurant in Lansing, we had to ask him to "use his inside voice"!
His voice is still raspy and a little airy, but he can sing quite well and loves forensics and debate, so his speaking voice issues have not deterred him in the least. At 17, the surgeon who did the implant feels he won't need another one, so all's well that ends with Greg making himself heard!
Monday, May 9, 2011
Center of the Universe?
All kids seem to think they are the center of the universe, don't they? And for their first few weeks, they certainly are for their parents and the assorted others who help care for them and ooh and ahh over them. But time passes, and other responsibilities - like other children, jobs, pets, laundry and all manner of chores - start impinging on that little person's "me-ness". So when a little one is no longer the center of their adult's universe, they usually let someone know about it - loud and clear! (Well, most kids do - Greg didn't but that is because he had a paralyzed vocal chord - and that is a topic for another blog!)
As kids grow they start to learn that there are other people, things and places in the world besides themselves, and they eventually learn ways to cope with no longer being the center of all activity. Blind children, however, have a harder time learning these coping skills. Their world ends at their finger tips, and it's difficult to get that wider sense of the big universe out there and the spacial relationships of their place in that world. Plus, they get SO MUCH adult attention! Added to that, small children usually play visually - if you don't believe me just sit down and watch a preschool class sometime. Their ability to see something they want - to play with, to eat, to touch, or whatever - far exceeds their ability to express those wants in words. They go get what they want, they lift their hands up to their parent or caregiver to be picked up and held: they see and then they do.
Blind and visually impaired children tend to only explore the space directly around them, so adults put them in the center of a pile of toys! The toys come to them - they don't go to get the toys! Their food arrives in front of them on a plate or a tray or a bowl - they don't see the food and "ask" for it! They don't see their mother cutting up their lunch into bite sized bits. That's the way food comes. It ARRIVES in front of them, all cut up and ready to eat! They must be the center of the universe!
Sighted children don't know how to play with a blind child, and a blind child doesn't know how to play with a sighted child unless that sighted child is particularly astute, or they get a lot of help from adults learning how to play together. Normal peer interactions are already being interfered with at the preschool level. It makes learning how to make friends pretty difficult. Being the "center of the universe", or COU for short, sometimes creates kids who lack empathy, are control freaks, like to order people - even the adults in their world - around, and speak in declamatory sentences. I don't remember any particular phrase Greg used a lot, but we used "COU" back to him with great frequency!
Kids need to understand that they need to be patient while waiting for someone to finish what they are working on so the other person can pay attention to them. Blind children can't often tell that someone else is doing anything at all - for instance reading - and so they have little notion of interrupting someone else's activities. They need to know that you are not available every second of every day. I drew the line on the bathroom eventually. My kids were not to try to talk with me while in was in the bathroom except for two reasons: the house was on fire, or someone was REALLY hurt.
All this might not seem to have a practical application, but I would contend that a person who is pleasant to be around, is considerate of other's feelings, and tries to solve their own problems before burdening others is one who might get to keep their job a little longer than someone who is very "high maintenance". It will pay fantastic dividends if you do the work to help your child understand that they are part of a community and that we all work together for the success of all - whether they are blind or not!
As kids grow they start to learn that there are other people, things and places in the world besides themselves, and they eventually learn ways to cope with no longer being the center of all activity. Blind children, however, have a harder time learning these coping skills. Their world ends at their finger tips, and it's difficult to get that wider sense of the big universe out there and the spacial relationships of their place in that world. Plus, they get SO MUCH adult attention! Added to that, small children usually play visually - if you don't believe me just sit down and watch a preschool class sometime. Their ability to see something they want - to play with, to eat, to touch, or whatever - far exceeds their ability to express those wants in words. They go get what they want, they lift their hands up to their parent or caregiver to be picked up and held: they see and then they do.
Blind and visually impaired children tend to only explore the space directly around them, so adults put them in the center of a pile of toys! The toys come to them - they don't go to get the toys! Their food arrives in front of them on a plate or a tray or a bowl - they don't see the food and "ask" for it! They don't see their mother cutting up their lunch into bite sized bits. That's the way food comes. It ARRIVES in front of them, all cut up and ready to eat! They must be the center of the universe!
Sighted children don't know how to play with a blind child, and a blind child doesn't know how to play with a sighted child unless that sighted child is particularly astute, or they get a lot of help from adults learning how to play together. Normal peer interactions are already being interfered with at the preschool level. It makes learning how to make friends pretty difficult. Being the "center of the universe", or COU for short, sometimes creates kids who lack empathy, are control freaks, like to order people - even the adults in their world - around, and speak in declamatory sentences. I don't remember any particular phrase Greg used a lot, but we used "COU" back to him with great frequency!
Kids need to understand that they need to be patient while waiting for someone to finish what they are working on so the other person can pay attention to them. Blind children can't often tell that someone else is doing anything at all - for instance reading - and so they have little notion of interrupting someone else's activities. They need to know that you are not available every second of every day. I drew the line on the bathroom eventually. My kids were not to try to talk with me while in was in the bathroom except for two reasons: the house was on fire, or someone was REALLY hurt.
All this might not seem to have a practical application, but I would contend that a person who is pleasant to be around, is considerate of other's feelings, and tries to solve their own problems before burdening others is one who might get to keep their job a little longer than someone who is very "high maintenance". It will pay fantastic dividends if you do the work to help your child understand that they are part of a community and that we all work together for the success of all - whether they are blind or not!
Friday, May 6, 2011
Those dastardly EATING SKILLS!
What can we say about eating skills??? They are really tough for anyone with a visual impairment. The sooner you start expecting "better" than simply food in fist from your child who is blind or visually impaired, the better - age appropriate, that is.
We have discovered that many children who are blind or visually impaired don't really rotate their hand and wrist properly. Some of this may be due to using the whole hand to find objects, rather than looking for an object - like a Cheerio - and picking it up with their thumb and one finger. The other problem is LEVEL. Many persons with visual impairments don't have a good sense of level - most of us have learned it by trying to carry a glass of water that was too full. So many of our kids have a tough time with soup or cereal with milk (many will eat their cereal dry just so they don't have to use a spoon) - they don't understand how and when to rotate their wrist in order to keep the spoon level. This takes a LOT of patience on the part of teachers, parents and occupational therapists, and a lot of willingness to try different approaches to see what works for your child.
One thing that does seem to work well is replacing our American system of using silverware (fork in right hand, switching to left when we need to cut something, so that our knife can be in our right hand) to the Continental method. The fork always stays in the left hand (for a right handed person) and the knife is always in the right hand and acts as a pusher - it's not just for cutting. The fork is held upside down. If you watch a lot of cooking shows, chefs on them often use the upside down fork to taste foods made on the show. I don't know if the Continental method is the only acceptable method of eating in cooking schools, but I have seen a lot of chefs eating this way. A piece of bread or a roll can also act as a pusher to move food to a good location for "loading" onto the back of a fork, which is being held - always - upside down (curved side facing up). As always, a TON of practice, rethinking and revamping, is needed to master either technique. We started Greg on the Continental style a little too late, so he kind of uses a mixture of both styles - mostly appropriately and mostly neatly. There are some foods that are always going to be difficult to handle. One frequent quip repeated in the blind community is to never order spaghetti on a date or a job interview! (unless, of course, the date or the interviewer is also blind, and you don't care what stains you get on your clothes, or you have no qualms about putting a huge napkin in the neck of your shirt!
Another thing kids need to practice is taking food from a community bowl - family style - and getting it to their plate neatly and in appropriate quantities. Again, tons of practice with level, feeling for the weight of the spoon, location of the plate and the bowl to prevent drips, having a place to put something when you are ready to put it down. We need to tell them when they have four servings-worth of mashed potatoes on their plate and only one green bean! Practice with tongs is important, too, as tongs are used in so many buffet restaurants these days.
Eating skills are some of the most difficult - and frustrating for parents and teachers alike - for your child to master. Be patient, be consistent, be expectant that your child will succeed. Be willing to try new approaches. Above all, love your child and assure him or her that they are going to be successful in this new skill and that it takes a long time and perservereance to reach their goal - and that they want to reach that goal!
Wednesday, May 4, 2011
What about other things that make my child look odd?
There are a lot of things that can make your child - who is becoming an adult - look odd to those who can see him or her. This is just plain not fair. If the whole world were made up of blind people, no one would care what we look like at all, and many would argue, the world would be a much better and happier place. For one thing, we could stop spending billions of dollars on cosmetics and designer fashions! (Unfortunately, humans being what we are, we will always find some way to discriminate against someone for something!).
Fortunately, some of these things - the things that can make our children appear "odd" - just take some common sense to correct. For instance, it's certainly easier for a young child to wear sweat pants all the time - easier to learn to get dressed, for learning to use the bathroom, more comfortable - no constricting waistband to complain about, etc. But at some point kids grow up and they don't wear sweats all the time to school anymore. This is really true for our kids, who need to work at zippers and buttons and snaps - and snaps on jeans can be particularly troublesome. Kids need to know how to do these things.
How do you know how to dress your child?
Fortunately, some of these things - the things that can make our children appear "odd" - just take some common sense to correct. For instance, it's certainly easier for a young child to wear sweat pants all the time - easier to learn to get dressed, for learning to use the bathroom, more comfortable - no constricting waistband to complain about, etc. But at some point kids grow up and they don't wear sweats all the time to school anymore. This is really true for our kids, who need to work at zippers and buttons and snaps - and snaps on jeans can be particularly troublesome. Kids need to know how to do these things.
How do you know how to dress your child?
- Hint #1 (and we were REALLY GUILTY): don't dress them like little replicas of yourselves!
- Hint #2: look to see what other kids are wearing in their same age group/class, but also in the next two grades above.
- Hint #3: Try not to always dress your child in hand-me-down clothes. Both our kids wore parachute pants long after they went out of style.
- Hint # 4: use some common sense - you want your child to be successful, and that means be able to handle their own clothing as well as being socially acceptable. That doesn't mean $200 basketball shoes. It just means being sensible and sensitive to your child's physical and social needs in regards to clothes. Social needs ARE needs - not just fluffy stuff we can live without. That said, not everything your teen wears has to come from Hollister.
- Hint #5: Try to balance giving your child some autonomy over their clothing selection with what is reasonable. Get in the habit of checking the weather report together and talk about what might be a good thing to wear that day.
On the other hand, some things may or may not make sense, and may seem more reasonable at one time than another. Whether or not to replace very damaged eyes, or underdeveloped eyes, with prosthetics (which do look remarkably lifelike these days and cause very little problems) is a decision parents are sometimes faced with - and may always wonder if they made the right decision.
What else? Well there are those other "blindisms" - the hand flapping, the craning the head toward the ceiling or always looking down, and not looking at a person they are speaking with. These are things that take a lot of reminding, a lot of teaching of proper angles, and a lot of training - and willingness on the part of the trainee! But, fear not, with persistence - and sometimes refusing to acknowledge or speak to them unless they are, (pick one or more: have their hands down, head straight ahead, or "looking at me"), you CAN successfully raise a child who doesn't flap, eyepress, look down all the time, and who is socially appropriate by looking where the speaker is. Sometimes we just tell a young child "I want to see your pretty (or handsome) face", sometimes we just say, "can you look at me, please?" If they don't understand, or move their head too far, we ask permission to touch their head and point it for them so that they have some idea where "level" is. But it takes TONS of repetition, and for a child who doesn't care or understand why they should care, it's hard to keep at it. Just keep reminding yourself of that job interview. Your son or daughter will need to look directly at the speaker, not flap, not rock, not spin, or any of those other things we've mentioned so that they will appear as hireable as possible.
Monday, May 2, 2011
Blindisms: What about the Rocking, Spinning, Jumping? and Sports?
Rocking, spinning and jumping are all very active blindisms, and can make your child appear autistic. Children who are blind or have very limited vision will sometimes rock so hard it makes me dizzy to watch them, or spin in place for 10 - 15 - even 20 minutes, or jump in place for even longer periods of time. While some of our kids actually do have autism, it can be difficult to separate what is due to blindness and what is truly due to autism. In any case, behavior modification used by therapist who work with autistic kids can work for children who are blind or visually impaired.
I am by no means an expert in this subject - what I have learned is almost entirely anecdotal. Still, there may be something that I have learned that matches with your experience with your own child, or may help you understand what your child's therapists or teachers are trying to say to you, or give you an idea for them to think about and to try.
I suspect these particular forms of blindism have a lot to do with our proprioceptive sense - where our body parts are in space. This can be very difficult for a blind child, and finding ways to give kids the feedback they need from their bodies may reduce the need for these large body movements. It may also, in some unforeseen way, help academically when your child is learning subjects with complex spatial relationships - like math, geometry, physics and chemistry - which are all difficult subjects for children who are blind or visually impaired.
This comes under the subject of sensory integration, and there has been a lot of research done and lots written about it - you will want to speak with someone in your child's school system about sensory integration techniques, since a missing sense -vision- can drastically impact a child's learning style and needs.
Something we did, even though Greg wasn't really a rocker, was, with his physical therapists direction, some joint compression, and played a lot of physical games. A favorite was that he would get down on all fours as if he was the house of the little pigs, and we would try to knock him down, by pressing on different parts of his body, as if we were the big bad wolf. This was tons of fun, and got the job done, too. Lot of physical contact - wrestling, large body movement - is all good for all kids.
Another kind of therapy which might help is called "astronaut training". It helps develop the vestibular system, which can be confused because of the lack of visual input. I saw a video demonstration of this recently at a conference in Wisconsin. I don't know if it is available in Michigan.
Some kids can stop eyepressing or rocking simply by pushing really hard on their leg to give them the stimulation they need, or sitting on their ankles and compressing their joints in this way. This kind of redirecting is finding a more socially acceptable - and perhaps invisible - way for your child to get what they need.
Another kind of redirecting - I would think about getting my rocker/spinner/jumper into an organized sport. Most little kids are into soccer or T-ball or other ball sports which are difficult to adapt for blind children (it CAN be done, and lots of kids who are blind or visually impaired do play with beeper balls and such, but it's hard to play on your local kids' team). Sports that ARE adaptable easily are those that are more individual - like gymnastics, wrestling and swimming. Swimming is absolutely an essential skill - start early! and it's a very difficult skill for a child with poor understanding of how his body works.
Teach them to ride a bike - use a Tag-a-Long ("make your own tandem") or get them to ride their own bike. A pedal go-cart can be great fun - so what if they crash? By the way, scraped knees and bleeding elbows are a rite of passage of childhood - don't deny your child the opportunity to get bumps and bruises and learn to deal with it and tell the tale later!
Set up a "running track" with a rope so that your child can practice running - a challenging skill if you've never seen anyone run before!
At Greg's IEP when he was 4 I asked the physical therapist to work on Greg learning to run properly with his arms swinging against his gait. She looked right at me and asked "why would you want him to learn to run?" I answered, "Because every other 4 year old knows how to run!". She clearly thought I was nuts, but I had a vision of the future and I wanted it to happen!
By the way, some years ago I saw a video about a young man who was totally blind and competed at the Division I level for the University of Georgia in Cross Country. He was consistently in their top five runners, too.
Other strategies you can use are allowing the unwanted behavior only in certain places. You will probably have to ween your child gradually from rocking all the time, to rocking only when there is free time at school (not when the teacher is talking, not when they are to be working on school work) to only at recess, to only on the bus, to only at home, to only in his or her room. Just like eyepressing, your child has to understand the need to stop the behavior and it needs to be his or her choice. Our job as parents is to give them sufficient motivation - and sometimes that means unpleasant consequences - to see that it is in their best interest to stop these behaviors.
I am by no means an expert in this subject - what I have learned is almost entirely anecdotal. Still, there may be something that I have learned that matches with your experience with your own child, or may help you understand what your child's therapists or teachers are trying to say to you, or give you an idea for them to think about and to try.
I suspect these particular forms of blindism have a lot to do with our proprioceptive sense - where our body parts are in space. This can be very difficult for a blind child, and finding ways to give kids the feedback they need from their bodies may reduce the need for these large body movements. It may also, in some unforeseen way, help academically when your child is learning subjects with complex spatial relationships - like math, geometry, physics and chemistry - which are all difficult subjects for children who are blind or visually impaired.
This comes under the subject of sensory integration, and there has been a lot of research done and lots written about it - you will want to speak with someone in your child's school system about sensory integration techniques, since a missing sense -vision- can drastically impact a child's learning style and needs.
Something we did, even though Greg wasn't really a rocker, was, with his physical therapists direction, some joint compression, and played a lot of physical games. A favorite was that he would get down on all fours as if he was the house of the little pigs, and we would try to knock him down, by pressing on different parts of his body, as if we were the big bad wolf. This was tons of fun, and got the job done, too. Lot of physical contact - wrestling, large body movement - is all good for all kids.
Another kind of therapy which might help is called "astronaut training". It helps develop the vestibular system, which can be confused because of the lack of visual input. I saw a video demonstration of this recently at a conference in Wisconsin. I don't know if it is available in Michigan.
Some kids can stop eyepressing or rocking simply by pushing really hard on their leg to give them the stimulation they need, or sitting on their ankles and compressing their joints in this way. This kind of redirecting is finding a more socially acceptable - and perhaps invisible - way for your child to get what they need.
Another kind of redirecting - I would think about getting my rocker/spinner/jumper into an organized sport. Most little kids are into soccer or T-ball or other ball sports which are difficult to adapt for blind children (it CAN be done, and lots of kids who are blind or visually impaired do play with beeper balls and such, but it's hard to play on your local kids' team). Sports that ARE adaptable easily are those that are more individual - like gymnastics, wrestling and swimming. Swimming is absolutely an essential skill - start early! and it's a very difficult skill for a child with poor understanding of how his body works.
Teach them to ride a bike - use a Tag-a-Long ("make your own tandem") or get them to ride their own bike. A pedal go-cart can be great fun - so what if they crash? By the way, scraped knees and bleeding elbows are a rite of passage of childhood - don't deny your child the opportunity to get bumps and bruises and learn to deal with it and tell the tale later!
Set up a "running track" with a rope so that your child can practice running - a challenging skill if you've never seen anyone run before!
At Greg's IEP when he was 4 I asked the physical therapist to work on Greg learning to run properly with his arms swinging against his gait. She looked right at me and asked "why would you want him to learn to run?" I answered, "Because every other 4 year old knows how to run!". She clearly thought I was nuts, but I had a vision of the future and I wanted it to happen!
By the way, some years ago I saw a video about a young man who was totally blind and competed at the Division I level for the University of Georgia in Cross Country. He was consistently in their top five runners, too.
Other strategies you can use are allowing the unwanted behavior only in certain places. You will probably have to ween your child gradually from rocking all the time, to rocking only when there is free time at school (not when the teacher is talking, not when they are to be working on school work) to only at recess, to only on the bus, to only at home, to only in his or her room. Just like eyepressing, your child has to understand the need to stop the behavior and it needs to be his or her choice. Our job as parents is to give them sufficient motivation - and sometimes that means unpleasant consequences - to see that it is in their best interest to stop these behaviors.
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