Hello everyone!
We hope you all had a wonderful Thanksgiving and enjoyed your time with the people you love. We are finally all feeling mostly back to normal after the swine flu and secondary infections and we had a wonderful Thanksgiving with our families. Isabella ended up at the hospital, after she seemed to be improving, got worse with a secondary bacterial infection. It was very scary, but as I said, we're all getting back to our normal selves finally:) Thanksgiving was spent with our families and we always have recipes from both sides of our families, like Greg's Granny's sweet potatoes, my Mom's stuffing and pumpkin muffins. Isabella especially loves this, we all do!
Thinking about Thanksgiving brings back a lot of memories. For us, Thanksgiving 2001 sticks out the most. It was a Thanksgiving we'll never forget.
Nick was just 8 years old on Thanksgiving of 2001. We were celebrating with family at my parents' house. It was, unfortunately, one of the years Greg had to work on Thanksgiving, so he couldn't be there but we spoke to him on the phone several times. After a wonderful night, we were all getting ready to go home. Isabella was 2 years old and she was very tired, so we were planning to go home to put her to bed. As I was gathering our things, Nick was sitting in the middle of the floor with his shoes on, his little black trench coat, waiting for me or someone to pick him up and take him to the car. All of a sudden he said, "hey mom!" and I looked at him, he stood up, all by himself, unassisted, awkwardly managed to get his balance (or close enough to it) and started walking across the living room. He walked all the way to the couch where his PaPa was waiting. We all yelled and screamed and I think I scared him so much by my instinctual reaction of screaming and crying with joy, he almost dropped straight to his knees, but he didn't. Everyone was in amazement, some of us tears, some of us laughing, just thrilled. I hugged him and he said, "you scared me" and then he said, "Mom, you're hugging me too tight!", which I didn't realize. I called Greg and work immediately and I couldn't even speak. Greg cried, we all did. We sat there in shock and amazement. When we got home that night and I put the kids to bed, I laid in bed and could not sleep.
You may be wondering why we "freaked out" and had such a crazy reaction to this event I'm describing to you. The reason I couldn't sleep was because I was going back to the beginning when Nick was little and playing things out in my head, things that lead to this moment with mixed emotions, happiness, sadness, bitter-sweetness, shock, etc.
When Nick was little, based on assessments and evaluations, we were told he would most likely never walk, at least not independently. Yet, ever since Nick was able to speak as a toddler/pre-schooler, he would always say, "I want to walk and run", "I am going to do it". He'd ask Greg and I, "why can't I walk like other kids?", "why can't I run?", "why can't I play regular sports?", and we had countless discussions about these things. I remember when Nick was three at a birthday party with kids his age who were running around and playing this game where they ran in a circle, he wanted to do it so badly, so he cried. Greg picked him up like he normally did, and carried him and acted like Nick's legs and ran with him, which Nick usually loved. Nick cried and didn't want this. He didn't want to be in his wheelchair and pushed. We asked him what was wrong and he said he just wanted to do it "by himself!" Nick has shown this streak of fierce determination to walk and do other things since he was a toddler. He was already showing us he wanted to be independent and do things other kids were doing. He was never one of those kids who became too dependent on his paras at school. In fact, in first grade, we had to work with him on telling people, "no thank you, I can do it myself", instead of getting frustrated when people would help him and he wanted to do things on his own.
For those who knew Nick as a child, his family, physical and occupational therapists, paras at school, they knew Nick had a major goal that HE set for himself, which was WALKING. Now, he had started using a little walker a few years earlier and had only in the 1st grade or so really be able to use it for some distances at school. It was slow-going at times and exhausting for him but he loved it. Then I got a call in first grade from his teacher who told me they had to "give him a verbal warning" for "riding down the ramp outside of school sitting on the back of his walker" and for "running in the halls with his walker". We were like, "YES!" To be clear, this was Nick's goal, not our goal. We wanted him to do whatever he could but if he could not walk, that was ok with us. For some reason, this was just something he really wanted to do and those who knew him, knew this. Greg often acted like his legs and would run with Nick in his arms so Nick could feel that rush a person gets when they are upright on their feet and running and the wind is hitting their face. Nick usually loved this but at times, he didn't because he wanted to do it himself. People take the ability to be upright on their feet, moving, having the wind hit them in their face when they go fast, etc. for granted. This was just something he wanted to do.
So, for the VERY FIRST TIME, Thanksgiving of 2001, at the age of 8, out of the blue, Nick just got up and did this for the first time without a walker or any help from anyone. It was amazing. I guess he was ready and showing us. After that, we took him to Canada (Ability Camp) for 6 weeks in the summer of 2002 and he can walk by himself short distances, but it is exhausting, unsteady, and he falls a lot. He now knows, at the age of 16, he can't "functionally" walk all of the time if he is to get places on time and have energy. That's not the point to Nick. He CAN do it. That's the point for him. Would he like to be able to do it like you and me? Of course! But, he CAN do it just like he said he would. Our heart still skips a beat and we never get used to it when we see him standing on his own and walking on his own. I now have to "look up" to him! It all started for the first time, Thanksgiving of 2001, which was something we will always be thankful for. This is one of our best Thanksgiving memories and I wanted to share it with you!
Blessings:)
Amy
Sunday, November 29, 2009
Thursday, November 19, 2009
Disability Is Natural
Hi everyone,
One of my favorite authors and speakers on disability issues is Kathie Snow. She is the parent of a son with cerebral palsy among many other things. She writes about her perspective on a variety of disability issues (inclusion, strategies, "People First Language" and many more).
I've had the opportunity to meet her once while attending a conference in Columbus while I was a Disability Navigator in 2008. I've also purchased some of her books and enjoy sharing her perspective with others.
If you have the opportunity, I would highly recommend you check out her web site at http://www.disabilityisnatural.com/ and you can sign up for a free newsletter which I enjoy, read about Kathie and her family, and get more information.
I always like to share good information and the web site and Kathie's writings are wonderful resources. Even if you don't agree with everything, Kathie's writing has a way of getting you to think about and look at situations in ways you may not have before. I love thought-provoking writing and I'm always open to learn about others' perspectives on things. If you enjoy these things and/or want to read Kathie's work, take some time to check out her web site.
Blessings:)
Amy
One of my favorite authors and speakers on disability issues is Kathie Snow. She is the parent of a son with cerebral palsy among many other things. She writes about her perspective on a variety of disability issues (inclusion, strategies, "People First Language" and many more).
I've had the opportunity to meet her once while attending a conference in Columbus while I was a Disability Navigator in 2008. I've also purchased some of her books and enjoy sharing her perspective with others.
If you have the opportunity, I would highly recommend you check out her web site at http://www.disabilityisnatural.com/ and you can sign up for a free newsletter which I enjoy, read about Kathie and her family, and get more information.
I always like to share good information and the web site and Kathie's writings are wonderful resources. Even if you don't agree with everything, Kathie's writing has a way of getting you to think about and look at situations in ways you may not have before. I love thought-provoking writing and I'm always open to learn about others' perspectives on things. If you enjoy these things and/or want to read Kathie's work, take some time to check out her web site.
Blessings:)
Amy
Therapies for Cerebral Palsy: What We've Tried
Nick has always received traditional therapies which are common for individuals with cerebral palsy such as physical therapy (PT), Occupational therapy (OT), and speech therapy as needed. Nick started these therapies as an infant in the Early Intervention Program in our area. For the first two years of his life, our medical insurance would not cover his therapies because they said his condition (cerebral palsy) was a "chronic condition" and that Nick was "non-restorable". We received this letter when he was 6 months of age. When Nick was two years old, our insurance again started paying for private OT and PT, with a limited number of visits, and a few speech therapy visits. He continued to receive therapies from Early Intervention until he reached school age. He received these therapies in school in Elementary School. Starting in Jr. High and now in High School, we only have the OT and PT see Nick on an as needed basis to consult with Nick and his teachers about accommodations for his classes, etc. He still receives private therapy as needed, when he grows, but we do most of our therapy (exercises) now at home. Nick loved water therapy and we try to take him to the YMCA to use the therapy pool as much as we can. Nick has said the is the ONLY time when he is not in pain (when he's in the water!).
The goals of therapies for individuals with cerebral palsy can vary from person to person but what it comes down to is that therapies are key in helping an individual with CP to maximize their daily functioning, which can include talking, daily living skills, overall fine and gross motor skills. It's about "managing" the cerebral palsy. This is what we've learned over time. You can't "cure" it, there is no cure. You can't make it go away. You just make your daily functioning level the best it can be and manage these kinds of issues as they come up. (for health, pain control, quality of life, overall functioning!) This is our take on it anyhow.
For those that don't know, these therapies and early intervention is especially important, even crucial, during the first three years of life. So, while we appealed the insurance companies decision all the way up to the State Board of Insurance, our early intervention program kicked in and were life-savers! They would go to Nick's daycare center and work with the staff there weekly and video-tape the sessions so Greg and I could watch them later and know what to work on. (on the days I couldn't make it to the sessions on my lunch hour.)
Finally, we decided when Nick wanted to walk really badly, to try conductive education at a place we found in Canada. In the spring of 2008, I wrote about it for my friend Joni when she asked me to write about it for a group of interested parents. Here is what I wrote about that experience:
In the summer of 2002, we took our son, Nicholas, who was eight years old at the time to Ability Camp in Picton, Ontario, Canada for conductive education therapy for 6 weeks.
Nicholas has athetoid cerebral palsy (is quadriplegic, all four limbs of his body and tongue, etc. are affected) and a progressive hearing loss. Nick was using a walker (and still does and uses a wheelchair for longer distances, and now has a Segway as well), however, at the time, he had a goal (HIS goal) of wanting to walk independently. Nick has been receiving PT, OT, and speech therapy ongoing from our private therapists since he was three months old, and still receives therapy as needed privately and at school.
Nick’s PT felt he needed a “boost” of intensive therapy and he would be able to walk independently. She recognized that she did not have the time to see him that often, and we recognized that as part of our daily life with working, our home, our 2 year old daughter at the time, etc., we could not assist Nick with hours of intensive therapy either. We did some research and had heard of conductive education and found the Ability Camp in Canada. At that time, there were no places we could find close in the US that were as affordable and provided such intensive therapy, 6 hours a day, 5 days a week, for 5 weeks. My husband and I both took FMLA from our employers, made arrangements for our house and dogs, and our family of four went to Canada for 6 weeks. It is about a three-four hour drive past Toronto. We stayed at the camp, with 15 other families, in very small facilities. Our room was 8X10 for the four of us and all of our luggage and there was one kitchen and four bathrooms for all of the families. It was an adventure. The area is VERY rural, 45 minutes to the nearest town with stores and Wal-Mart, etc., and beautiful. We spent our weekends in Toronto or Belleville (the nearest “big” town) or at the beaches, which are very close to the camp. Mon.-Fri. we spent 6 hours a day helping Nick and the instructors with his therapy and we could “practice, play, etc.” with the other kids in the evenings. The program included daily sage baths for Nick’s legs (they say to relax his muscles), the place smelled like turkeys! It was one of the best summers of our lives together. Nick was able to walk independently after that (for shorter distances) and gained a lot of strength and skills.
It is our opinion that this was a great option and experience for Nick. It is also our opinion that this is no “magic” cure, as no therapy is. We feel this benefited Nick because of the hours and intensity of therapy he had. We feel if he could have received that same therapy here from his PT, we would have absolutely gotten the same results, but our healthcare system is not set up that way and the cost would be out of hand. For anyone, if they “work out” or exercise 6 hours a day, 5 days a week, you are going to see results. So, our feeling is, that is wasn’t “conductive education” that made this experience work so well for Nick, but rather the amount of therapy he received, which is why we did it. We feel many therapies would work just as well in this same intensity. We have found that there is no way to keep that up back at home. We have been faithful about doing daily stretches, etc., but as Nick has had many growth spurts, he is 14, going on 15, and grown tremendously, we regularly see regression and we know once he stops growing and we step up his therapy again, he’ll catch up again. We expect this to continue to happen until he stops growing (and the teenage years are the worst we’ve been told!).
If we could afford to do something like this again, we would. Nick continues his PT, OT, etc. as needed and we do a lot at home with him (stretches, etc.), which is really the key in our opinion (not “taking him” to therapy, but what you do on a daily basis at home) and this helps. Nick is having his first surgery on both legs in June. (we’ve done botox and casting several times with little results) We’ve been able to hold off until now, we think in part because of his therapy, but with his growth now, the doctors have said he will not be able to continue walking without the surgery. We personally believe that there is not “one thing” that works for everyone and families should do what they think is best for their child and for their own family.
So, our experience with conductive education was great for Nick because of the reasons we noted. Below, I have attached some information from the Ability Camp website about cerebral palsy and conductive education. The phone number (you can get a free DVD) and website are listed.
Amy Hyndman amyhyndman@buckeye-express.com 419-872-7522
Info. From Ability Camp's web site:
Ability Camp
At Ability Camp we have treated thousands of children with Cerebral Palsy over the last 10 years. The parents that come to us have tried every conceivable treatment for Cerebral Palsy imaginable and consistently tell us we have the most effective program available anywhere in the world. We offer Conductive Education combined with Hyperbaric Oxygen Therapy. We are one of the only places to offer both under one roof.
What is Conductive Education?
Conductive Education started in Hungary 60 years ago. Conductive Education helps children and adults with motor disorders learn to overcome problems of movement resulting from disease or damage to the central nervous system. It approaches motor disorders as a problem of learning or relearning - a problem that will respond to the appropriate teaching. If they can move and they can learn, they can learn to move. By repeating tasks and integrating intentional movement with learning, the brain creates alternate pathways to send messages to muscle groups creating the desired movements.
What does Hyperbaric Oxygen Therapy do?
At normal air pressure you are absorbing about as much oxygen as you can. Even if you were fed pure oxygen at this pressure you couldn't absorb more oxygen than you would get from normal air. However if the pressure was increased to about twice the pressure difference you would get on an airplane, you could absorb far more oxygen. This extra oxygen is said to increase the level of activity around the brain injury.
Are Conductive Education and Hyperbaric Oxygen Therapy more effective together?
If Conductive Education is trying to create alternate pathways in the brain and if Hyperbaric Oxygen Therapy is stimulating those areas, then it might make it easier to create those new pathways. The results aren't just theory, we have seen first hand over and over again. While the results can be good from either one, they are much better together.
How long does it take?
Our children's Conductive Education program is 5 weeks long. Children from 1 to 6 years old spend 5 hours a day, 5 days a week in Conductive education. Children from 7 to 14 years old spend 6 hours a day 5 days a week on Conductive Education. The 40 Hyperbaric sessions are one a day on weekdays and 2 a day on weekends, spread out over the same 5 weeks.
What kind of results can I expect from this?
If you are looking for some quick fix, then you are going to be very disappointed. While Hyperbaric Oxygen Therapy itself does not demand a lot of effort, what gains you get are less likely to become permanent if it is not accompanied by effort to make use of the improvements gained. Conductive Education is the ideal way to cement those gains and make them permanent.
With Conductive Education we can teach your children how and what to do, to overcome problems of movement. We will custom tailor a program according to their individual needs and abilities. We will challenge them to do more than you ever thought was possible and they are going to love it. In our group setting they will be working alongside children their own age, with similar exercises and the same sort of challenges to overcome. Amidst the cheers and admiration of the friends they have made, they will put forth far more effort than they would in one on one therapy. They are going to see the results and gain a new sense of pride and accomplishment.
If you would be thrilled with incremental gains in many different areas, then we can help you with that. For instance; if they are using a walker that supports their weight the next step could be a walker that doesn't support their weight. If they are using a walker that doesn't support their weight, the next step would be canes with the 3 little legs sticking out. After that comes straight canes, then no canes. It is common for children to accomplish one of those steps in our 5 week program.
Don't get the wrong impression; we work on far more than just their gross motor skills. Our program includes feeding themselves, brushing their teeth, potty training, speech, social skills and many other things they need to start on the road to independence.
Even an incremental gain can make a huge difference in your child's life and make your life much easier too. If you feel that your child could be doing far better than they are now, but need help to make that happen, then you have come to the right place.
For more information and to receive a Free DVD call Kevin at 1-800-442-6992 or email to kevin@abilitycamp.com
One last thing. We've also tried horseback riding therapy (called hippotherapy) for Nick which was WONDERFUL. The only reason we stopped is that the therapy provider we used had funding problems and closed for awhile. When they re-opened, Nick was into other things at the time and he decided not to go back for now, but we may do this again in the future. This was great for balance and stretching of muscles, and much more. For more info. , check out www.americanhippotherapyassociation.org.
There are even more therapies out there now for cerebral palsy. My thoughts are, don't judge families if they try something alternative or different. Each family and each individual has to do what is right for them. Sometimes it is a process of "trial and error" but it is always to benefit the person with CP. What works for one family or individual, may not work for another. I believe it's important to know what is available and make informed decisions based on what is best for your child (or family member with CP) AND your family at the same time.
This information is based on our experiences with Nick. Of course we'd love to hear from others with any other helpful information to share.
Blessings:)
Amy
The goals of therapies for individuals with cerebral palsy can vary from person to person but what it comes down to is that therapies are key in helping an individual with CP to maximize their daily functioning, which can include talking, daily living skills, overall fine and gross motor skills. It's about "managing" the cerebral palsy. This is what we've learned over time. You can't "cure" it, there is no cure. You can't make it go away. You just make your daily functioning level the best it can be and manage these kinds of issues as they come up. (for health, pain control, quality of life, overall functioning!) This is our take on it anyhow.
For those that don't know, these therapies and early intervention is especially important, even crucial, during the first three years of life. So, while we appealed the insurance companies decision all the way up to the State Board of Insurance, our early intervention program kicked in and were life-savers! They would go to Nick's daycare center and work with the staff there weekly and video-tape the sessions so Greg and I could watch them later and know what to work on. (on the days I couldn't make it to the sessions on my lunch hour.)
Finally, we decided when Nick wanted to walk really badly, to try conductive education at a place we found in Canada. In the spring of 2008, I wrote about it for my friend Joni when she asked me to write about it for a group of interested parents. Here is what I wrote about that experience:
In the summer of 2002, we took our son, Nicholas, who was eight years old at the time to Ability Camp in Picton, Ontario, Canada for conductive education therapy for 6 weeks.
Nicholas has athetoid cerebral palsy (is quadriplegic, all four limbs of his body and tongue, etc. are affected) and a progressive hearing loss. Nick was using a walker (and still does and uses a wheelchair for longer distances, and now has a Segway as well), however, at the time, he had a goal (HIS goal) of wanting to walk independently. Nick has been receiving PT, OT, and speech therapy ongoing from our private therapists since he was three months old, and still receives therapy as needed privately and at school.
Nick’s PT felt he needed a “boost” of intensive therapy and he would be able to walk independently. She recognized that she did not have the time to see him that often, and we recognized that as part of our daily life with working, our home, our 2 year old daughter at the time, etc., we could not assist Nick with hours of intensive therapy either. We did some research and had heard of conductive education and found the Ability Camp in Canada. At that time, there were no places we could find close in the US that were as affordable and provided such intensive therapy, 6 hours a day, 5 days a week, for 5 weeks. My husband and I both took FMLA from our employers, made arrangements for our house and dogs, and our family of four went to Canada for 6 weeks. It is about a three-four hour drive past Toronto. We stayed at the camp, with 15 other families, in very small facilities. Our room was 8X10 for the four of us and all of our luggage and there was one kitchen and four bathrooms for all of the families. It was an adventure. The area is VERY rural, 45 minutes to the nearest town with stores and Wal-Mart, etc., and beautiful. We spent our weekends in Toronto or Belleville (the nearest “big” town) or at the beaches, which are very close to the camp. Mon.-Fri. we spent 6 hours a day helping Nick and the instructors with his therapy and we could “practice, play, etc.” with the other kids in the evenings. The program included daily sage baths for Nick’s legs (they say to relax his muscles), the place smelled like turkeys! It was one of the best summers of our lives together. Nick was able to walk independently after that (for shorter distances) and gained a lot of strength and skills.
It is our opinion that this was a great option and experience for Nick. It is also our opinion that this is no “magic” cure, as no therapy is. We feel this benefited Nick because of the hours and intensity of therapy he had. We feel if he could have received that same therapy here from his PT, we would have absolutely gotten the same results, but our healthcare system is not set up that way and the cost would be out of hand. For anyone, if they “work out” or exercise 6 hours a day, 5 days a week, you are going to see results. So, our feeling is, that is wasn’t “conductive education” that made this experience work so well for Nick, but rather the amount of therapy he received, which is why we did it. We feel many therapies would work just as well in this same intensity. We have found that there is no way to keep that up back at home. We have been faithful about doing daily stretches, etc., but as Nick has had many growth spurts, he is 14, going on 15, and grown tremendously, we regularly see regression and we know once he stops growing and we step up his therapy again, he’ll catch up again. We expect this to continue to happen until he stops growing (and the teenage years are the worst we’ve been told!).
If we could afford to do something like this again, we would. Nick continues his PT, OT, etc. as needed and we do a lot at home with him (stretches, etc.), which is really the key in our opinion (not “taking him” to therapy, but what you do on a daily basis at home) and this helps. Nick is having his first surgery on both legs in June. (we’ve done botox and casting several times with little results) We’ve been able to hold off until now, we think in part because of his therapy, but with his growth now, the doctors have said he will not be able to continue walking without the surgery. We personally believe that there is not “one thing” that works for everyone and families should do what they think is best for their child and for their own family.
So, our experience with conductive education was great for Nick because of the reasons we noted. Below, I have attached some information from the Ability Camp website about cerebral palsy and conductive education. The phone number (you can get a free DVD) and website are listed.
Amy Hyndman amyhyndman@buckeye-express.com 419-872-7522
Info. From Ability Camp's web site:
Ability Camp
At Ability Camp we have treated thousands of children with Cerebral Palsy over the last 10 years. The parents that come to us have tried every conceivable treatment for Cerebral Palsy imaginable and consistently tell us we have the most effective program available anywhere in the world. We offer Conductive Education combined with Hyperbaric Oxygen Therapy. We are one of the only places to offer both under one roof.
What is Conductive Education?
Conductive Education started in Hungary 60 years ago. Conductive Education helps children and adults with motor disorders learn to overcome problems of movement resulting from disease or damage to the central nervous system. It approaches motor disorders as a problem of learning or relearning - a problem that will respond to the appropriate teaching. If they can move and they can learn, they can learn to move. By repeating tasks and integrating intentional movement with learning, the brain creates alternate pathways to send messages to muscle groups creating the desired movements.
What does Hyperbaric Oxygen Therapy do?
At normal air pressure you are absorbing about as much oxygen as you can. Even if you were fed pure oxygen at this pressure you couldn't absorb more oxygen than you would get from normal air. However if the pressure was increased to about twice the pressure difference you would get on an airplane, you could absorb far more oxygen. This extra oxygen is said to increase the level of activity around the brain injury.
Are Conductive Education and Hyperbaric Oxygen Therapy more effective together?
If Conductive Education is trying to create alternate pathways in the brain and if Hyperbaric Oxygen Therapy is stimulating those areas, then it might make it easier to create those new pathways. The results aren't just theory, we have seen first hand over and over again. While the results can be good from either one, they are much better together.
How long does it take?
Our children's Conductive Education program is 5 weeks long. Children from 1 to 6 years old spend 5 hours a day, 5 days a week in Conductive education. Children from 7 to 14 years old spend 6 hours a day 5 days a week on Conductive Education. The 40 Hyperbaric sessions are one a day on weekdays and 2 a day on weekends, spread out over the same 5 weeks.
What kind of results can I expect from this?
If you are looking for some quick fix, then you are going to be very disappointed. While Hyperbaric Oxygen Therapy itself does not demand a lot of effort, what gains you get are less likely to become permanent if it is not accompanied by effort to make use of the improvements gained. Conductive Education is the ideal way to cement those gains and make them permanent.
With Conductive Education we can teach your children how and what to do, to overcome problems of movement. We will custom tailor a program according to their individual needs and abilities. We will challenge them to do more than you ever thought was possible and they are going to love it. In our group setting they will be working alongside children their own age, with similar exercises and the same sort of challenges to overcome. Amidst the cheers and admiration of the friends they have made, they will put forth far more effort than they would in one on one therapy. They are going to see the results and gain a new sense of pride and accomplishment.
If you would be thrilled with incremental gains in many different areas, then we can help you with that. For instance; if they are using a walker that supports their weight the next step could be a walker that doesn't support their weight. If they are using a walker that doesn't support their weight, the next step would be canes with the 3 little legs sticking out. After that comes straight canes, then no canes. It is common for children to accomplish one of those steps in our 5 week program.
Don't get the wrong impression; we work on far more than just their gross motor skills. Our program includes feeding themselves, brushing their teeth, potty training, speech, social skills and many other things they need to start on the road to independence.
Even an incremental gain can make a huge difference in your child's life and make your life much easier too. If you feel that your child could be doing far better than they are now, but need help to make that happen, then you have come to the right place.
For more information and to receive a Free DVD call Kevin at 1-800-442-6992 or email to kevin@abilitycamp.com
One last thing. We've also tried horseback riding therapy (called hippotherapy) for Nick which was WONDERFUL. The only reason we stopped is that the therapy provider we used had funding problems and closed for awhile. When they re-opened, Nick was into other things at the time and he decided not to go back for now, but we may do this again in the future. This was great for balance and stretching of muscles, and much more. For more info. , check out www.americanhippotherapyassociation.org.
There are even more therapies out there now for cerebral palsy. My thoughts are, don't judge families if they try something alternative or different. Each family and each individual has to do what is right for them. Sometimes it is a process of "trial and error" but it is always to benefit the person with CP. What works for one family or individual, may not work for another. I believe it's important to know what is available and make informed decisions based on what is best for your child (or family member with CP) AND your family at the same time.
This information is based on our experiences with Nick. Of course we'd love to hear from others with any other helpful information to share.
Blessings:)
Amy
Wednesday, November 18, 2009
More info. to come.....
Hi everyone,
We're still all recovering from the flu and being ill. When we're feeling better, I will be posting more and I have more information I want to share. Thank you for your patience!
Blessings:)
Amy
We're still all recovering from the flu and being ill. When we're feeling better, I will be posting more and I have more information I want to share. Thank you for your patience!
Blessings:)
Amy
Friday, November 13, 2009
Added a Slide Show of Books and Movies We Like
Hi everyone,
I've added a slide show on the right side of the blog with books and movies we like and would recommend. (scroll down a bit and it will be on the right-hand side of this page!)
We've read and own most of the books and movies on the list, with a few exceptions. I made the list on Amazon.com (www.amazon.com) which is where I purchase most of my books and videos but they can be found in many other places of course.
I'll be adding to this list as we add to our collection!
Blessings:)
Amy
I've added a slide show on the right side of the blog with books and movies we like and would recommend. (scroll down a bit and it will be on the right-hand side of this page!)
We've read and own most of the books and movies on the list, with a few exceptions. I made the list on Amazon.com (www.amazon.com) which is where I purchase most of my books and videos but they can be found in many other places of course.
I'll be adding to this list as we add to our collection!
Blessings:)
Amy
H1N1 / Swine Flu
Hi everyone,
Just an update from my post yesterday. We took Nick to the doctor. They ran tests and Nick does have the H1N1/swine flu. He is pretty sick and taking Tamiflu. The doctor said as he is higher risk of this, we need to watch his lungs/breathing and take him to the ER if any signs of difficulty as we don't want him to end up with pneumonia.
Greg, Isabella, and I made it to a clinic last night (we took turns while one of stayed with Nick) near-by and got the H1N1 vaccine (mist) but I guess it was too late for Nick:)
Nick got 2 hours of sleep last night and is feeling pretty miserable at this point. Thanks to everyone for your thoughts and prayers. We really appreciate it!:)
Blessings:)
Amy
Just an update from my post yesterday. We took Nick to the doctor. They ran tests and Nick does have the H1N1/swine flu. He is pretty sick and taking Tamiflu. The doctor said as he is higher risk of this, we need to watch his lungs/breathing and take him to the ER if any signs of difficulty as we don't want him to end up with pneumonia.
Greg, Isabella, and I made it to a clinic last night (we took turns while one of stayed with Nick) near-by and got the H1N1 vaccine (mist) but I guess it was too late for Nick:)
Nick got 2 hours of sleep last night and is feeling pretty miserable at this point. Thanks to everyone for your thoughts and prayers. We really appreciate it!:)
Blessings:)
Amy
Thursday, November 12, 2009
Sports Injuries and The Flu at The Hyndmans
Hi everyone,
Just a quick post while Nick is sleeping....he has the flu! It started yesterday with a cough and the cough and congestion got worse overnight. Then this morning, he had fever, cough, congestion, chills, achy all over, and then the vomiting started. He's so sick! He hasn't been this sick since he was young. I was planning to take the kids and go to an H1N1 clinic in our area today after school. He's got every symptom of H1N1 but we don't know if it's that or not. The doctor's office is supposed to get back to me to let me know if he should even go in. What can they do for him at the office anyhow, etc. If he starts to show certain other signs, we'll just take him to the ER, but for now, we're just waiting and watching, trying to get him to keep any fluids down! As a parent, you feel so helpless when you can't really comfort them, just hold the waste basket, wipe their face, try to force fluids and Popsicles, etc. I must admit, I had a panic-induced breakdown earlier, kind of caused by flashing back to those memories of all of the times Nick started off having just a cold and we ended up at the hospital with something major so quickly. Those were very scary times. At least we know what to watch for now.
To top off the flu, earlier this week, in Nick's second week of wrestling practice/conditioning, he got kneed in the chest during a move and the trainer said he probably bruised his ribs, he definitely has a bruise on his chest ( a visible one) and it hurts as you can imagine. So, the coughing really hurts him and we have to watch out that the chest pain isn't caused by something more than the bruising. But, Greg and I were joking, we are proud members of the "Parents with kids who have sports injuries club!" Finally! After all these years! Wow, be careful what you wish for, huh? Really, we used to say, well, since Nick has CP, at least we don't have to worry about him injuring himself at sports and other things like other kids do, or at least not as frequently. You know, with him having CP, we never used to get the usual "boo-boos", didn't have to use many band-aids (unless it was for blood work, etc.) and he never got as many scrapes and bruises. It was because he didn't have the ability or opportunity to "get out in the world" and physically do the things that other kids did. It was only when we had Isabella, and she is a "cautious" kid, did we really realize how many more little injuries she got just from playing, etc. and moving around! We'd joke, well, at least that's one good thing about CP! (ha-ha) Oh, I guess we could count his bike-injury in September as his first injury from sports, but this is his first "wrestling" injury.
So, when Nick announced to us he wanted to try wrestling, I said to myself, "really? did he have to pick such a tough sport?" I didn't know, and still don't know, how I'm going to be able to watch him wrestle and possibly get hurt. BUT, I'll of course, do anything for him (and Bella)! So, I'll just "suck it up" and remember this is about his dreams and just be there to support him, no matter how it turns out. The wonderful thing as I mentioned in an earlier post, is that the coaches have, from the beginning, had a wonderfully inclusive attitude and told Nick he can be part of the team even if the wrestling doesn't work out. From what Greg and my Dad say, they are constantly adapting things for Nick, doing research, showing him things and are just all-around fantastic. What great role models and examples they are to all of our kids! Thank you! We are so grateful, no matter how things end up turning out!
So, that's the latest in The Hyndman household this week, sports injuries and the flu! Be careful what you wish for. We're just enjoying the good AND the bad because it means Nick is getting out there and doing this, so we'll take it and just be here for him!
I hope everyone stays healthy!
Blessings:)
Amy
Just a quick post while Nick is sleeping....he has the flu! It started yesterday with a cough and the cough and congestion got worse overnight. Then this morning, he had fever, cough, congestion, chills, achy all over, and then the vomiting started. He's so sick! He hasn't been this sick since he was young. I was planning to take the kids and go to an H1N1 clinic in our area today after school. He's got every symptom of H1N1 but we don't know if it's that or not. The doctor's office is supposed to get back to me to let me know if he should even go in. What can they do for him at the office anyhow, etc. If he starts to show certain other signs, we'll just take him to the ER, but for now, we're just waiting and watching, trying to get him to keep any fluids down! As a parent, you feel so helpless when you can't really comfort them, just hold the waste basket, wipe their face, try to force fluids and Popsicles, etc. I must admit, I had a panic-induced breakdown earlier, kind of caused by flashing back to those memories of all of the times Nick started off having just a cold and we ended up at the hospital with something major so quickly. Those were very scary times. At least we know what to watch for now.
To top off the flu, earlier this week, in Nick's second week of wrestling practice/conditioning, he got kneed in the chest during a move and the trainer said he probably bruised his ribs, he definitely has a bruise on his chest ( a visible one) and it hurts as you can imagine. So, the coughing really hurts him and we have to watch out that the chest pain isn't caused by something more than the bruising. But, Greg and I were joking, we are proud members of the "Parents with kids who have sports injuries club!" Finally! After all these years! Wow, be careful what you wish for, huh? Really, we used to say, well, since Nick has CP, at least we don't have to worry about him injuring himself at sports and other things like other kids do, or at least not as frequently. You know, with him having CP, we never used to get the usual "boo-boos", didn't have to use many band-aids (unless it was for blood work, etc.) and he never got as many scrapes and bruises. It was because he didn't have the ability or opportunity to "get out in the world" and physically do the things that other kids did. It was only when we had Isabella, and she is a "cautious" kid, did we really realize how many more little injuries she got just from playing, etc. and moving around! We'd joke, well, at least that's one good thing about CP! (ha-ha) Oh, I guess we could count his bike-injury in September as his first injury from sports, but this is his first "wrestling" injury.
So, when Nick announced to us he wanted to try wrestling, I said to myself, "really? did he have to pick such a tough sport?" I didn't know, and still don't know, how I'm going to be able to watch him wrestle and possibly get hurt. BUT, I'll of course, do anything for him (and Bella)! So, I'll just "suck it up" and remember this is about his dreams and just be there to support him, no matter how it turns out. The wonderful thing as I mentioned in an earlier post, is that the coaches have, from the beginning, had a wonderfully inclusive attitude and told Nick he can be part of the team even if the wrestling doesn't work out. From what Greg and my Dad say, they are constantly adapting things for Nick, doing research, showing him things and are just all-around fantastic. What great role models and examples they are to all of our kids! Thank you! We are so grateful, no matter how things end up turning out!
So, that's the latest in The Hyndman household this week, sports injuries and the flu! Be careful what you wish for. We're just enjoying the good AND the bad because it means Nick is getting out there and doing this, so we'll take it and just be here for him!
I hope everyone stays healthy!
Blessings:)
Amy
Monday, November 9, 2009
A very cool story......
A very cool story on channel 13 news (Toledo) on Friday 11/6/09. Only three minutes and definitely worth your time to watch. It's just so good. Some people "get it"........
Hope you enjoy it:)
Amy
http://abclocal.go.com/wtvg/video?id=7105270
Hope you enjoy it:)
Amy
http://abclocal.go.com/wtvg/video?id=7105270
Thursday, November 5, 2009
Nick-wrestling and other updates
Hello everyone!
Fall is flying by for us. We had a great Halloween. Isabella was a "Chef", inspired by her love of watching The Food Network and the fact that my Dad used to have his own catering business. My Dad (PaPa) also gave her a giant whisk he used in his catering business. She was adorable and loved trick-or treating. Nick went to the Daughtry concert in Toledo in our new arena. His friend, Stephen, got him the tickets for his birthday and they went together along with Stephen's Mom. What a great birthday gift! Nick had a great time!
New news, which many of our friends and family have heard, Nick had joined the wrestling team at Perrysburg High School!
About a month or so ago, Nick came home and told us he wanted to join the wrestling team. We thought, great, but "how will that work?" He told us he spoke to one of the coaches and they told him to come to the meeting, then we attended the parent meeting, and immediately, the coaches said, "sure, we'd love to have him, we don't know how this is going to work, but we'll give it a try".
I cannot stress enough how important this attitude has been in all of Nick's successful experiences: "we haven't done this (maybe) but WE"LL TRY!" How refreshing. We don't have all of the answers. This is a new experience for us and the coaches. I know nothing about wrestling. (Greg knows more than me!) Obviously, Nick is physically challenged due to his CP. Nick's CP affects all of his body, all four limbs, his fine and gross motor skills, his speech. He's quadriplegic. One of the coaches sent an e-mail to Greg stating their willingness to try this, stating that they will treat Nick as much as possible like any other wrestler and adapt what they can. That is all Nick, all we, have ever asked for and want! So, Nick started conditioning with the team this week. He is SO SORE. Greg and I decided we are taking this "one day at a time", then one week at a time. We don't know how much Nick will be able to do. So far, we've had to have myself, Greg, or my Dad there to assist Nick with changing his clothes after school, taking his service dog, Charger home, and helping him in whatever way we can. We don't know if we can continue this but we will try because Nick is trying. He is loving it. The coaches have had a wonderful attitude and so have the other wrestlers. We have spoken to Nick's physical therapist and she has agreed to meet with the coaches to consult with them and make any suggestions she can for adaptations. We have told the coaches to "ask us anything" as well. Together, we can figure out a way for Nick to be meaningfully included and I'm sure Nick will work his A _ _ off as well! (pardon the language but it's true!) This entire experience has started off in this positive way, so different from Nick's previous experience wanting to help out with the high school basketball team as he had done in Jr. High. The High School basketball coach and one of the Vice Principals, told asked us how Nick could actually "contribute" to the team (we made several suggestions and gave them a pile of research I printed from the Internet showing individuals with disabilities in coaching and managing roles, real life examples, in high schools and colleges....), that he would be a distraction and this could interfere with the boys getting scholarships, safety issues, ETC. Basically, they said no in many ways. Nick did not want to be part of the team after that anyhow because he felt he did not want to be where he wasn't wanted, and we agreed with that. How sad that he had that experience but if that hadn't happened, we may not be having this experience today. The wrestling coaches seem to be more open-minded, inclusive, and willing to try than the basketball coach had been.
Nick wrote the following as a small part of something he wrote for an assignment at school called "Sports and Me":
Sports and Me
Sports are my number one passion in my life. I’ve loved sports for as long as I can remember. I believe it is so ironic how because of my disability, how limited I am when it comes to being involved with my number one passion. But I’ve never let it stop me from doing them. My grandpa says that the first type of ball I used to play was called “sock ball”. He says when I was three years old, he would take a rolled up pair of socks, and we would play catch with it. We would play catch for hours, and I’d have a smile on my face the whole time. He still tells me to this day, “as long as you’d have a ball in your hand, you were happy”. I’ve never heard anything more true, because I’m still that way today.
Because of my CP (Cerebral Palsy), I’m very limited and restricted as to how involved I can become with sports. But I have found a couple of leagues in the area for kids with disabilities. My first involvement with a sport was Challenger League of Greater Toledo baseball. I started in the league when I was eight years old, and I’m still on the same team I was on eight years ago. It’s my favorite sports league that I’ve been involved in because it’s not about winning or losing, it’s simply about giving everyone a chance to get involved with something and having fun. The age group is from age six to eighteen. So, when I go out on the diamond now, and I see a six or seven year old or anyone step up to the plate, it puts a smile on my face, because I see that even though these kids are disabled, they don’t let that stop them. They don’t let it get in the way of doing something that nobody thought they would ever do. And whether the disability is blindness or something that causes them to have no use of their hands, when they find a way to swing that bat, and they hit the ball, you see the smile and laughter, and sometimes tears of happiness, of accomplishment, and there is no better sight or feeling in the world.
Another league I was involved with for a while was a soccer league here in Perrysburg for kids with disabilities. I was involved with it from age ten to thirteen. Because I can’t walk that well, I played the goalie position on my knees the majority of the time. I got involved with it because at the time I just wanted something to do. Soccer wasn’t my favorite sport but I still really enjoyed playing it and meeting new kids. And even though I wasn’t involved with it for very long, again it was just amazing to see more kids with disabilities just go out there and have fun.
Since the sixth grade, I’ve had this dream/goal about me playing a sport for my school. The reason why I call it a dream, is because of my disability, realistically I am not good enough to compete at the level of the kids on the school teams. But, I believe that I do have the ability to compete in more advanced leagues than I’m in now. I want to be challenged and pushed to my limits, so it’s hard to find a league that’s the perfect amount of challenge for me. From my seventh grade year to my freshmen year, I got involved with the school basketball team as a so-called “manager”. Basically, I sat on the bench and was kind of a “mascot” for the guys. Which was a wonderful experience, but again it wasn’t something where I was challenged because I couldn’t even play.
Ever since I’ve had this dream, I’ve tried doing some research. I’ve tried to find people that had physical disabilities and actually played on a sport for their school. As a result of my research, I found two cases where a teen in high school actually had the ability to play on a team. One guy I saw in person, Steven Klorer was on the Clay High School wrestling team, and he had spina bifida and had no use of his legs because of it. The other guy played a defense position in football, and he didn’t have legs. So, after I did my research, I’ve told myself ever since, “if they can do it, why can’t I?” I am still chasing after this dream, at the moment I am very close to pursuing it; I want to be on my school’s wrestling team just like Steven Klorer was. The coaches are fine with it; the only thing that’s standing in the way is I have to get my doctor’s approval. Hopefully, he gives me a chance.
I was having a conversation with my Dad last week, and he asked me, “ Why do you want this so bad, why do you want to wrestle?” He didn’t doubt me, he was just curious. My response was, “I’m not doing this just for me. See, I idolize people like Steven and that guy with no legs who played football because they are two of the very small amount of people with physical disabilities that have the ability to actually play at that level. Those people are my role models. If I achieve this, look at what I’m representing, myself, my school, and every guy out there with a physical disability that has that dream of becoming a part of something nobody thought they could ever be. I could be the research for one of these guys the same way Steven was for me. I could be that extra push someone needs to see that if I was able to become a part of this, then they can too.” I say it’s ironic how my disability makes my number one passion in life so limited, but without my disability, would sports be my number one passion?
Sports are my number one passion in my life. I’ve loved sports for as long as I can remember. I believe it is so ironic how because of my disability, how limited I am when it comes to being involved with my number one passion. But I’ve never let it stop me from doing them. My grandpa says that the first type of ball I used to play was called “sock ball”. He says when I was three years old, he would take a rolled up pair of socks, and we would play catch with it. We would play catch for hours, and I’d have a smile on my face the whole time. He still tells me to this day, “as long as you’d have a ball in your hand, you were happy”. I’ve never heard anything more true, because I’m still that way today.
Because of my CP (Cerebral Palsy), I’m very limited and restricted as to how involved I can become with sports. But I have found a couple of leagues in the area for kids with disabilities. My first involvement with a sport was Challenger League of Greater Toledo baseball. I started in the league when I was eight years old, and I’m still on the same team I was on eight years ago. It’s my favorite sports league that I’ve been involved in because it’s not about winning or losing, it’s simply about giving everyone a chance to get involved with something and having fun. The age group is from age six to eighteen. So, when I go out on the diamond now, and I see a six or seven year old or anyone step up to the plate, it puts a smile on my face, because I see that even though these kids are disabled, they don’t let that stop them. They don’t let it get in the way of doing something that nobody thought they would ever do. And whether the disability is blindness or something that causes them to have no use of their hands, when they find a way to swing that bat, and they hit the ball, you see the smile and laughter, and sometimes tears of happiness, of accomplishment, and there is no better sight or feeling in the world.
Another league I was involved with for a while was a soccer league here in Perrysburg for kids with disabilities. I was involved with it from age ten to thirteen. Because I can’t walk that well, I played the goalie position on my knees the majority of the time. I got involved with it because at the time I just wanted something to do. Soccer wasn’t my favorite sport but I still really enjoyed playing it and meeting new kids. And even though I wasn’t involved with it for very long, again it was just amazing to see more kids with disabilities just go out there and have fun.
Since the sixth grade, I’ve had this dream/goal about me playing a sport for my school. The reason why I call it a dream, is because of my disability, realistically I am not good enough to compete at the level of the kids on the school teams. But, I believe that I do have the ability to compete in more advanced leagues than I’m in now. I want to be challenged and pushed to my limits, so it’s hard to find a league that’s the perfect amount of challenge for me. From my seventh grade year to my freshmen year, I got involved with the school basketball team as a so-called “manager”. Basically, I sat on the bench and was kind of a “mascot” for the guys. Which was a wonderful experience, but again it wasn’t something where I was challenged because I couldn’t even play.
Ever since I’ve had this dream, I’ve tried doing some research. I’ve tried to find people that had physical disabilities and actually played on a sport for their school. As a result of my research, I found two cases where a teen in high school actually had the ability to play on a team. One guy I saw in person, Steven Klorer was on the Clay High School wrestling team, and he had spina bifida and had no use of his legs because of it. The other guy played a defense position in football, and he didn’t have legs. So, after I did my research, I’ve told myself ever since, “if they can do it, why can’t I?” I am still chasing after this dream, at the moment I am very close to pursuing it; I want to be on my school’s wrestling team just like Steven Klorer was. The coaches are fine with it; the only thing that’s standing in the way is I have to get my doctor’s approval. Hopefully, he gives me a chance.
I was having a conversation with my Dad last week, and he asked me, “ Why do you want this so bad, why do you want to wrestle?” He didn’t doubt me, he was just curious. My response was, “I’m not doing this just for me. See, I idolize people like Steven and that guy with no legs who played football because they are two of the very small amount of people with physical disabilities that have the ability to actually play at that level. Those people are my role models. If I achieve this, look at what I’m representing, myself, my school, and every guy out there with a physical disability that has that dream of becoming a part of something nobody thought they could ever be. I could be the research for one of these guys the same way Steven was for me. I could be that extra push someone needs to see that if I was able to become a part of this, then they can too.” I say it’s ironic how my disability makes my number one passion in life so limited, but without my disability, would sports be my number one passion?
By Nicholas Austin Hyndman October 2009
So, we'll keep you posted on the wrestling............I know this was a longer post, but I had so much to tell!
Blessings:)
Amy
PS-We have a bumper sticker on our van that says, "Attitudes are the Real Disability".
Sunday, November 1, 2009
Siblings
I asked our daughter, Isabella, to write something for the blog. She wrote the following:
Hi, My name is Isabella Hyndman. I am ten years old. I am in fourth grade and I am writing because my Mom asked me to talk about a story I remember about my brother Nick Hyndman. It goes like this. When Nick was little he was made fun of a lot about his disability. So, he read this book written by Bill Cosby my Mom got him about bullies. It said if you are made fun of you should just say, “So”, and that’s what he did, because people don’t know what to say when you say that. The people who made fun of him were speechless. I think that was really cool! I don’t know if I could do that. I think my brother is so strong because he goes through these things. Sometimes people stare at Nick when we are out and that makes me feel a little mad because he is just like you so, why stare? I also get mad when people make fun of him. Also, people really do not speak to him a lot. Sometimes I talk to my Mom when I get mad about these things. My Mom says it’s ok to feel that way because I love Nick so much but Nick is going to be OK. But there are a lot of changes that are happening now like his new assistant dog Charger. More people socialize with Nick because of Charger. I think Nick is a great role model because of so many reasons. He goes through so many challenges everyday and he never gives up. He is one of the people I really look up to. Nick has taught me so much about how no matter how hard things may be you should never give up. Having Nick as my big brother is absolutely great! When he was born the doctors said he would never walk or talk and look at him now. He is walking better then ever before and he has talked for almost his whole life. I don’t know what I would do with out Nick. I love Nick so much. This is just one story I think of when it comes to Nick.
Written by Isabella Grace Hyndman, October 2009
When we had Isabella in 1999, Nick was 6 years-old. We were thrilled. We had prepared Nick like many parents so to be a "big brother", sibling classes at the hospital, books, talking to him. He was SO happy and so were we. We've heard a lot of talk (conferences, books, etc.) about the siblings of individuals with disabilities and the issues they live with. We definitely are aware of these issues. We know we often have to take a lot more time with Nick due to his therapy, appointments, illnesses, ETC. We would never minimize experiences of people who have negative feelings about having a sibling with a disability because we know their experiences are real.
We feel, however, that as a FAMILY, everything that affects one of us, of course affects all of us. So, we were prepared for any issues that may arise. We have always and still do make an effort to make sure both of our children know how much we love them, have our time and attention, have individual interests, and most importantly, can talk to us about how they feel. Of course, things aren't always "perfectly" equal as far as time and attention goes. Isn't that true for most families? We have gotten Isabella several books on "being the sibling" of an individual with a disability. She's read some and some are more advanced reading that are put away on her book shelf. We started talking to her as early as she was able to understand it, at her level at the time, about Nick's disability. She's lived it. She's observed, expressed her feelings about it, cried over things, and is an "advocate" at her young age. We truly feel that Isabella's life has been enhanced in countless ways by having a brother, who among many other things, has a disability. They love each other fiercely. They are "buddies" in spite of their age difference. Nick is, in turn, a protective, loving, and involved brother to Isabella. I feel, because we have such open dialogue and communication, any issues or feelings that have and do come up, are really OK. It's all OK. Isabella is a more compassionate, empathetic, and caring person because she has a big brother who has a disability. We are certain of this. So, my point is, it can all be OK if you are aware of issues and communicate about them, which has been our experience.
Good books:
Written by Isabella Grace Hyndman, October 2009
When we had Isabella in 1999, Nick was 6 years-old. We were thrilled. We had prepared Nick like many parents so to be a "big brother", sibling classes at the hospital, books, talking to him. He was SO happy and so were we. We've heard a lot of talk (conferences, books, etc.) about the siblings of individuals with disabilities and the issues they live with. We definitely are aware of these issues. We know we often have to take a lot more time with Nick due to his therapy, appointments, illnesses, ETC. We would never minimize experiences of people who have negative feelings about having a sibling with a disability because we know their experiences are real.
We feel, however, that as a FAMILY, everything that affects one of us, of course affects all of us. So, we were prepared for any issues that may arise. We have always and still do make an effort to make sure both of our children know how much we love them, have our time and attention, have individual interests, and most importantly, can talk to us about how they feel. Of course, things aren't always "perfectly" equal as far as time and attention goes. Isn't that true for most families? We have gotten Isabella several books on "being the sibling" of an individual with a disability. She's read some and some are more advanced reading that are put away on her book shelf. We started talking to her as early as she was able to understand it, at her level at the time, about Nick's disability. She's lived it. She's observed, expressed her feelings about it, cried over things, and is an "advocate" at her young age. We truly feel that Isabella's life has been enhanced in countless ways by having a brother, who among many other things, has a disability. They love each other fiercely. They are "buddies" in spite of their age difference. Nick is, in turn, a protective, loving, and involved brother to Isabella. I feel, because we have such open dialogue and communication, any issues or feelings that have and do come up, are really OK. It's all OK. Isabella is a more compassionate, empathetic, and caring person because she has a big brother who has a disability. We are certain of this. So, my point is, it can all be OK if you are aware of issues and communicate about them, which has been our experience.
Good books:
- The Meanest Thing To Say: A Little Bill Book by Bill Cosby
- Taking Cerebral Palsy to School by Mary Elizabeth Anderson and Tom Dineen
- Thicker Than Water: Essays by Adult Siblings of People With Disabilities by Don Meyer
- The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs by Don Meyer and David GallagherViews from Our Shoes: Growing Up With a Brother or Sister With Special Needs by Donald J. Meyer
- Sibshops: Workshops for Siblings of Children with Special Needs by Donald J. Meyer
- Living With a Brother or Sister With Special Needs: A Book for Sibs by Donald J. Meyer
- Reflections from a Different Journey : What Adults with Disabilities Wish All Parents Knew by Stanley Klein
We get our books from Amazon.com, Woodbine House, or Exceptional Parent Library, but I'm sure there are many other sources, and other books. We use books as ONE tool to learn about and talk about these issues. These are books we've personally read. I'll be posting more book info. as I continue.....
Subscribe to:
Posts (Atom)