"Intolerance closes us off from seeing things in new ways, from going beyond the limitations of our past, & from finding new, more resourceful ways of relating to others."
Debbie Ford
Blessings:)
Amy
Friday, January 7, 2011
Wednesday, January 5, 2011
Post Received on Facebook Today
Hi all,
This quote was on a friend's Facebook page today and I had to copy it! Here it is:
"I don't think the worst thing that could happen to me is having a child with special needs. I think the worst thing would be to raise a child who is cruel to people with special needs." ~ Matthew Mickelson Butman
I say Amen! Too bad I know some kids like this. We also know some great kids who have been raised to be kind, compassionate, inclusive too. It just amazes me though the number of kids I hear about or read on Facebook (yes, I monitor my son's page and his friends too!) that make ignorant comments and I think, "boy, your parents must be SO proud of you!" UGH! Today, I saw a FB post on a page of one of Nick's friends (who is a sweet girl and great friend to Nick) that said "Wow... look like one of those special kids on the back of the short bus..." in response to a cute picture she put on her FB page. (And by the way, this friend of Nick's and I send messages to each other on FB usually about Nick because she "friend requested" me.)Just one example but these are the kind of things I unfortunately hear about all too frequently.
It's good to be aware and I feel passionate about this kind of thing, obviously, so I had to write about it. Good quote though, huh?
Blessings:)
Amy
This quote was on a friend's Facebook page today and I had to copy it! Here it is:
"I don't think the worst thing that could happen to me is having a child with special needs. I think the worst thing would be to raise a child who is cruel to people with special needs." ~ Matthew Mickelson Butman
I say Amen! Too bad I know some kids like this. We also know some great kids who have been raised to be kind, compassionate, inclusive too. It just amazes me though the number of kids I hear about or read on Facebook (yes, I monitor my son's page and his friends too!) that make ignorant comments and I think, "boy, your parents must be SO proud of you!" UGH! Today, I saw a FB post on a page of one of Nick's friends (who is a sweet girl and great friend to Nick) that said "Wow... look like one of those special kids on the back of the short bus..." in response to a cute picture she put on her FB page. (And by the way, this friend of Nick's and I send messages to each other on FB usually about Nick because she "friend requested" me.)Just one example but these are the kind of things I unfortunately hear about all too frequently.
It's good to be aware and I feel passionate about this kind of thing, obviously, so I had to write about it. Good quote though, huh?
Blessings:)
Amy
Tuesday, January 4, 2011
Word DO Hurt
Hi all,
You know that saying, "Sticks and stones will break my bones but words (or names) will never hurt me" ? Well, I say that is a bunch of BULL!!!!! (excuse the language-that's the kindest word I could think of to use!)
Not only have I been Nick's Mom, the mother of a child with disabilities, for 17 years now, I've worked with individuals with disabilities and their families off and on in a variety of capacities for 20 years. I've spoken with hundreds of individuals with disabilities and their families. So, I base what I'm saying on not only OUR experience, but the things I've learned from others as well.
I've said this before, but when a person had a disability, it not only affects them (primarily) but it impacts everyone in the family. I've also said before, we consider ourselves (Greg, Nick, Bella, and myself) a "team", not just a family. When one of us is hurt, we all hurt. Over the years, we've experience countless things. Nick individually, us with Nick, and Isabella even has experienced people's ignorance, calling Nick names, teasing him, saying insensitive things or excluding him. I could write a post or at least the chapter of a book recounting these incidents and I think people would be shocked at much of it. Nick would say and we'd agree that the physical and medical things he's been through have been tough, but the people's words have been even more difficult to endure. Word stick with you. My personal opinion is that words, things people say, are personally far worse to deal with and forget than anything else a person can endure. And, yes, we take then personally. How can you NOT take it personally when you are human and have human feelings and people are talking about you or someone you love? We can't. Social issues have been a much more difficult problem and challenge for Nick to deal with than the physical/medical stuff consistently, and at every stage.
Words DO hurt, worse than anything else and they stick with you for the rest of your life. You can deal with it, forgive, move on, but you never forget them and they shape you, sometimes for the better and sometimes for the worse, into the person you currently are. That is something I KNOW to be true for Nick and for all of us in this family, and in my opinion, for everyone.
Words cannot be taken back or changed, or heal like a physical wound. So, for all of these experiences Nick has had and we've had with him over the years, most of them come from people outside of the family. I've spoken to so many families who have told me stories of how their families have not included their child with disabilities and were ignorant and said or did hurtful things. I couldn't believe it and I felt so lucky because we did not have that happen at all for many years. Our families do include Nick and for the most part, they get it and understand. Especially our parents, well, they REALLY get it and have been there consistently.
For Nick, the first experience he had from a person he was close to was with a neighbor boy who was his close friend for years. He lived across the street and would be over our house almost every day when school was not in. This boy declared he Nick would be his "best friend forever". Then, as kids do, he got older and the difference was, he could go and and do things that Nick couldn't do, so over time, he kind of "outgrew" Nick and left Nick here with no explanation and no longer included Nick in what he did. It left Nick hurt, angry, sad. (and us too) In his case, he didn't hurt Nick with words but the social rejection was so hurtful. Nick has two cousins who are close to him in age and who he was really close to, would do things with, and when we had family get togethers, etc., they would be inseparable. Then they also grew up, as they should, and outgrew Nick. They basically started doing things that Nick couldn't do, with their friends, etc., which is normal and understandable, but what also happened is that even at family get togethers, they would not talk to Nick, play with him, etc. They still don't give him the time of day most of time. Nick has shared with us MANY times now much this has hurt him and it was at this time that we started to understand that the things that other families were telling me were now coming true for Nick/us. We get it now. You expect those things (unfortunately) from others to some extent but we didn't expect Nick to be excluded within his own family in that way, that for a teen, is devastating.
Then over Christmas this year, Nick had family member(s) say something that was VERY hurtful about Nick and even though it was said to be "out of concern" for Nick, what was said was hurtful and mean. One of the most hurtful things about it from Nick's perspective is, he said that one of these family members did not even speak to him until it was to say good-bye at the end of the night, not one word, and they usually don't give him the time of day, yet came to me and said these really hurtful things. Like Nick said, if they were so concerned about me, why don't they even look at me or talk to me? I thought he had a great point. Now these words that were said have not only hurt us (Greg, Nick, and myself), but we know now how these people see Nick (in not a favorable way). It really ruined the get together for me. I tried to keep a good face on for the kids but it was so hard. Greg and I decided to just spend the rest of the holidays on our own, just the four of us and the kids agreed to spend New Years just the four of us. It felt good because we didn't have to worry about being hurt by anyone ignoring Nick or saying anything hurtful.
So, words DO hurt and the intentions behind them hurt when people exclude and ignore you yet have an opinion about you. Did I vent a little by writing about this? Sure. Did I write about it to share with other families, YES. Just as so many families have shared these hurts with me over the years and I didn't REALLY understand it until it happened to us. Now I get it. As always, this will not get us, Team Hyndman, down for long. We know as long as we have each other, we'll be OK and we are excited for 2011 and to see what it brings. We expect it to be a year of change and transition for Nick especially with his graduation, starting college we hope, and turning 18 in August. So many changes but we're doing it all together!:)
Blessings:)
Amy
You know that saying, "Sticks and stones will break my bones but words (or names) will never hurt me" ? Well, I say that is a bunch of BULL!!!!! (excuse the language-that's the kindest word I could think of to use!)
Not only have I been Nick's Mom, the mother of a child with disabilities, for 17 years now, I've worked with individuals with disabilities and their families off and on in a variety of capacities for 20 years. I've spoken with hundreds of individuals with disabilities and their families. So, I base what I'm saying on not only OUR experience, but the things I've learned from others as well.
I've said this before, but when a person had a disability, it not only affects them (primarily) but it impacts everyone in the family. I've also said before, we consider ourselves (Greg, Nick, Bella, and myself) a "team", not just a family. When one of us is hurt, we all hurt. Over the years, we've experience countless things. Nick individually, us with Nick, and Isabella even has experienced people's ignorance, calling Nick names, teasing him, saying insensitive things or excluding him. I could write a post or at least the chapter of a book recounting these incidents and I think people would be shocked at much of it. Nick would say and we'd agree that the physical and medical things he's been through have been tough, but the people's words have been even more difficult to endure. Word stick with you. My personal opinion is that words, things people say, are personally far worse to deal with and forget than anything else a person can endure. And, yes, we take then personally. How can you NOT take it personally when you are human and have human feelings and people are talking about you or someone you love? We can't. Social issues have been a much more difficult problem and challenge for Nick to deal with than the physical/medical stuff consistently, and at every stage.
Words DO hurt, worse than anything else and they stick with you for the rest of your life. You can deal with it, forgive, move on, but you never forget them and they shape you, sometimes for the better and sometimes for the worse, into the person you currently are. That is something I KNOW to be true for Nick and for all of us in this family, and in my opinion, for everyone.
Words cannot be taken back or changed, or heal like a physical wound. So, for all of these experiences Nick has had and we've had with him over the years, most of them come from people outside of the family. I've spoken to so many families who have told me stories of how their families have not included their child with disabilities and were ignorant and said or did hurtful things. I couldn't believe it and I felt so lucky because we did not have that happen at all for many years. Our families do include Nick and for the most part, they get it and understand. Especially our parents, well, they REALLY get it and have been there consistently.
For Nick, the first experience he had from a person he was close to was with a neighbor boy who was his close friend for years. He lived across the street and would be over our house almost every day when school was not in. This boy declared he Nick would be his "best friend forever". Then, as kids do, he got older and the difference was, he could go and and do things that Nick couldn't do, so over time, he kind of "outgrew" Nick and left Nick here with no explanation and no longer included Nick in what he did. It left Nick hurt, angry, sad. (and us too) In his case, he didn't hurt Nick with words but the social rejection was so hurtful. Nick has two cousins who are close to him in age and who he was really close to, would do things with, and when we had family get togethers, etc., they would be inseparable. Then they also grew up, as they should, and outgrew Nick. They basically started doing things that Nick couldn't do, with their friends, etc., which is normal and understandable, but what also happened is that even at family get togethers, they would not talk to Nick, play with him, etc. They still don't give him the time of day most of time. Nick has shared with us MANY times now much this has hurt him and it was at this time that we started to understand that the things that other families were telling me were now coming true for Nick/us. We get it now. You expect those things (unfortunately) from others to some extent but we didn't expect Nick to be excluded within his own family in that way, that for a teen, is devastating.
Then over Christmas this year, Nick had family member(s) say something that was VERY hurtful about Nick and even though it was said to be "out of concern" for Nick, what was said was hurtful and mean. One of the most hurtful things about it from Nick's perspective is, he said that one of these family members did not even speak to him until it was to say good-bye at the end of the night, not one word, and they usually don't give him the time of day, yet came to me and said these really hurtful things. Like Nick said, if they were so concerned about me, why don't they even look at me or talk to me? I thought he had a great point. Now these words that were said have not only hurt us (Greg, Nick, and myself), but we know now how these people see Nick (in not a favorable way). It really ruined the get together for me. I tried to keep a good face on for the kids but it was so hard. Greg and I decided to just spend the rest of the holidays on our own, just the four of us and the kids agreed to spend New Years just the four of us. It felt good because we didn't have to worry about being hurt by anyone ignoring Nick or saying anything hurtful.
So, words DO hurt and the intentions behind them hurt when people exclude and ignore you yet have an opinion about you. Did I vent a little by writing about this? Sure. Did I write about it to share with other families, YES. Just as so many families have shared these hurts with me over the years and I didn't REALLY understand it until it happened to us. Now I get it. As always, this will not get us, Team Hyndman, down for long. We know as long as we have each other, we'll be OK and we are excited for 2011 and to see what it brings. We expect it to be a year of change and transition for Nick especially with his graduation, starting college we hope, and turning 18 in August. So many changes but we're doing it all together!:)
Blessings:)
Amy
Happy New Year 2011
Hi all,
Happy New Year from Team Hyndman! We hope 2011 brings everyone good health and happiness.
It's been awhile since I posted for several reasons. I'm sure the holidays are so busy for everyone and they were for us! We all had "BUGS" (sinus infections, colds, etc.) for several weeks in December and Greg and I were REALLY sick, and still dealing with the last lingering symptoms. Luckily the kids were doing better by the time the holidays actually hit. Greg had to work a lot this year over the holidays. He got a few days off but we had to be creative in our own family celebration. We were able to pull off some special time together for celebrating that was actually very nice!
In December Isabella had a violin concert at school and we were amazed how good she and her classmates are doing with strings for just starting when school started this year. She really loves it. The concert was beautiful. They had the high school strings group play and they were REALLY good! Nick had wrestling and then he and many of the other team members got "mat rash" after a big tournament and Nick is still getting rid of his. This was a first experience for us with anything like this. We know it's part of wrestling and other sports but we can't way we love this part of it! So, Nick is still sitting it out and hopefully he'll be ready to wrestle again soon. I know he's anxious to get back into it. The kids got to celebrate our niece Lucie's third birthday and unfortunately, Greg and I were too sick to go. The kids also went with my Mom and Dad and their cousins to visit my brother Jimmie and Mike at their cottage in Indiana and they got to stay in a hotel, swim, and just have fun with their cousins!
One of the big things that happened in December is that Nick got his Drivers License the Wednesday before Christmas! We are so thankful to the driving instructor from Capabilities, Greg, who helped Nick to accomplish this goal! Now, we just have to get a vehicle with a lift for him so he can drive and go places on his own. For now, he'll have to drive with us or someone else still as he cannot get his wheelchair in and out of the van by himself. So, this is something we're going to be working on and hope to get an adapted vehicle for him in the next 6-12 months. (it's $8000-$12000 for the cost of the accommodations he needs!) We are SO proud of Nick for not giving up when he so many obstacles and extra steps/hoops to jump through to accomplish this goal. Even when Greg and I were so frustrated, he remained positive and didn't give up. We are SO proud of him for that!
Bella got another turtle to keep Shelly company. She named him Sheldon. They are really cute and I actually like them so much more than I thought I would. They're smart and Bella is really good at taking care of them!
We also went to The Nutcracker in December and our niece Maddie had two parts in it. We had seats right up front in the middle. It was fantastic, really beautiful!
I am going to write another post to talk about this some more but some of the holidays were not so great for us. Because of that, we decided just to close ranks, stick together and spend New Years Eve alone, just the four of us doing our own thing. It was PERFECT and just what we needed. Things always seem better when we're together and when we're hurting, time doing our own thing just makes things seem OK. We ended up having a great dinner, watching a movie and brought in the New Year TOGETHER which is the most important thing to us.
So, that's the update for the past month. I will be posting more regularly again and we hope 2011 is a great year for all of us!
Blessings:)
Amy
PS- We have some good friends who received some devastating health news just before the holidays so we have them and a family member dealing with cancer, surgery, and treatment this month and for the next several months at least. We are keeping them in our prayers and ask anyone who is willing to do the same. Never give up faith or hope!
Happy New Year from Team Hyndman! We hope 2011 brings everyone good health and happiness.
It's been awhile since I posted for several reasons. I'm sure the holidays are so busy for everyone and they were for us! We all had "BUGS" (sinus infections, colds, etc.) for several weeks in December and Greg and I were REALLY sick, and still dealing with the last lingering symptoms. Luckily the kids were doing better by the time the holidays actually hit. Greg had to work a lot this year over the holidays. He got a few days off but we had to be creative in our own family celebration. We were able to pull off some special time together for celebrating that was actually very nice!
In December Isabella had a violin concert at school and we were amazed how good she and her classmates are doing with strings for just starting when school started this year. She really loves it. The concert was beautiful. They had the high school strings group play and they were REALLY good! Nick had wrestling and then he and many of the other team members got "mat rash" after a big tournament and Nick is still getting rid of his. This was a first experience for us with anything like this. We know it's part of wrestling and other sports but we can't way we love this part of it! So, Nick is still sitting it out and hopefully he'll be ready to wrestle again soon. I know he's anxious to get back into it. The kids got to celebrate our niece Lucie's third birthday and unfortunately, Greg and I were too sick to go. The kids also went with my Mom and Dad and their cousins to visit my brother Jimmie and Mike at their cottage in Indiana and they got to stay in a hotel, swim, and just have fun with their cousins!
One of the big things that happened in December is that Nick got his Drivers License the Wednesday before Christmas! We are so thankful to the driving instructor from Capabilities, Greg, who helped Nick to accomplish this goal! Now, we just have to get a vehicle with a lift for him so he can drive and go places on his own. For now, he'll have to drive with us or someone else still as he cannot get his wheelchair in and out of the van by himself. So, this is something we're going to be working on and hope to get an adapted vehicle for him in the next 6-12 months. (it's $8000-$12000 for the cost of the accommodations he needs!) We are SO proud of Nick for not giving up when he so many obstacles and extra steps/hoops to jump through to accomplish this goal. Even when Greg and I were so frustrated, he remained positive and didn't give up. We are SO proud of him for that!
Bella got another turtle to keep Shelly company. She named him Sheldon. They are really cute and I actually like them so much more than I thought I would. They're smart and Bella is really good at taking care of them!
We also went to The Nutcracker in December and our niece Maddie had two parts in it. We had seats right up front in the middle. It was fantastic, really beautiful!
I am going to write another post to talk about this some more but some of the holidays were not so great for us. Because of that, we decided just to close ranks, stick together and spend New Years Eve alone, just the four of us doing our own thing. It was PERFECT and just what we needed. Things always seem better when we're together and when we're hurting, time doing our own thing just makes things seem OK. We ended up having a great dinner, watching a movie and brought in the New Year TOGETHER which is the most important thing to us.
So, that's the update for the past month. I will be posting more regularly again and we hope 2011 is a great year for all of us!
Blessings:)
Amy
PS- We have some good friends who received some devastating health news just before the holidays so we have them and a family member dealing with cancer, surgery, and treatment this month and for the next several months at least. We are keeping them in our prayers and ask anyone who is willing to do the same. Never give up faith or hope!
toledoblade.com -- The Blade ~ Toledo Ohio
toledoblade.com -- The Blade ~ Toledo Ohio
Hi all,
A thought-provoking article in The Blade yesterday. Made me cringe to read how individuals with disabilities were looked at back then and I wish I could say thing have changed completely but they haven't. Maybe we've come a long way, but there is still a long way to go. I love learning about the history of the disability rights movement.
Blessings:)
Amy
Hi all,
A thought-provoking article in The Blade yesterday. Made me cringe to read how individuals with disabilities were looked at back then and I wish I could say thing have changed completely but they haven't. Maybe we've come a long way, but there is still a long way to go. I love learning about the history of the disability rights movement.
Blessings:)
Amy
Tuesday, December 7, 2010
Question From Student In Australia
Hi all,
I received the following e-mail from a student/reader who lives in Australia. She gave me permission to share this but not her name, so I took her name out. Here is the e-mail:
Hi Amy (and family),
My name's _____. I'm a senior in high school in Australia. At the moment, I'm working on a major project for my English class. I am writing a mini-novella based on the true story of Tate and Nash Kemp -- and I believe you are aware of them as I noticed you posted the video on your blog. I was wondering if it would be possible to ask you a few questions about how your own family copes with the struggles of having a member with cerebral palsy, and possibly receiving some insight into the emotional and social aspects of the illness, rather than just the facts that a quick Google search can provide. It is the smaller details that will help shape my understanding. I'm hoping to discover some of the idiosyncrasies of the illness that outsiders would not be aware of. Please understand you have every right to decline my request, especially if it sounds too intrusive. Though I am aiming to be as respectful of your privacy as possible.
Thank you very much for your time,
(student)
Here's the second e-mail I received from her:
Hello,
Thank you so much for agreeing! It means a lot. Yes, Australia's really amazing, bias aside.
I totally understand. My brother's currently in California visiting his girlfriend, and they've been busy with Thanksgiving and crazy shopping!
Of course you may post this online, and, yes, if it's okay, I'd prefer my name to be kept out.
I have some, I suppose, prompt questions for you to lead you in the right direction. Use them as strictly or loosely as you like! If you would prefer not to answer one, that's no problem at all. I am appreciative enough that you have agreed to help me.
- What kind of things are necessary for your family to do every day to keep Nick's illness managed? Or, how do you help him to manage on a daily basis?
- How does Isabella cope with her brother's disability? (I'm aware this is a big and broad question so I will allow you to take it where you want it to go)
- Are there regular doctors' appointments you would have to make to monitor the illness and in particular, his deteriorating hearing, as you mentioned on the blog? What do they involve?
- Has Nick received a lot of trouble from his peers for his disability?
- I know you mentioned the impact from your own friends and other families within the community, which just shocked and outraged me. Anything more you have to say on this, as specific/broad as you would like, would be appreciated.
- And basically YOUR opinions/views/feelings about anything related to how your family is coping with this. I am just so interested in picking your brain, if you can't already tell, so you can share whatever you feel like as I am a keen listener.
I commend your participation in the online community and the courage you have to share yourself and your life openly. It is no doubt a help to myself in this situation and many others in ones similar to yours. Thank you so, so much!
(student)
Here's the responses I sent her:
Hi _____,
I'm sorry it has taken me a few days to get back to you. I hope I am not holding you up in any way!
I'm just going to copy and paste your questions and then answer them:
- What kind of things are necessary for your family to do every day to keep Nick's illness managed? Or, how do you help him to manage on a daily basis?
With Nick's CP, we use physical therapy (PT), occupational therapy (OT), and speech therapy, as well as PT in the water. Now, he only really receives PT right now and he only now goes as needed, when he's having a problem. We have to use a variety of exercises at home DAILY, including stretching to help his muscles from contracting and to manage his pain. At home, in addition to daily stretching and exercises (about 30 minutes as he is wrestling at high school right now and works out a lot for that), we got a portable whirlpool tub we can put in our bathtub (we cannot afford a jacuzzi tub or pool right now!) and he soaks 30-40 min. at night in a hot whirlpool bath with Epsom salts to help relax his muscles and help with pain, he takes medications daily for GI Reflux, allergies, and nerve damage/pain, we put bars he can hold while standing up in our garage, hallways, bathroom, and Nick's bedroom, have special rails installed on our toilet and bathtub, a special shower-head he can pull down and use in the tub, a shower chair to take showers with, ramps at all three entrances in the house, a special phone with large buttons and for hearing impaired individuals. We also use straw cups for him to drink from with handles. Nick has a service dog who can retrieve items he drops, the telephone, get him a snack, etc., and more. Nick wears hearing aids during the day and uses an FM system to stream sound from his IPOD, speakers at school, etc. We have a special smoke detector with a strobe light and a bed vibrator for hearing impaired individuals, as well as a special device that makes his bedroom light turn on and off when the doorbell rings or phone rings. He has an alarm clock that is very loud and vibrates his bed. He has bed rails (on a regular bed). He uses a wheelchair and walker to get around outside the house, as well as a Segway and he wears AFO leg/foot orthotics during the day when he's not at home to help him walk. I think that's it. Hope I'm not leaving anything out!
- How does Isabella cope with her brother's disability? (I'm aware this is a big and broad question so I will allow you to take it where you want it to go)
We just have ALWAYS, from the time she was a baby, talked about Nick's disability, read her children's books about disabilities and with pictures of people in wheelchairs, etc., answered her questions honestly at the level she was at when she asks them, she's around other kids with disabilities and adults all of the time at Nick's activities and with our friends, so it's kind of like we have "as a matter of fact" attitude about it all. We let her tell us how she feels, whatever it is, cry, whatever. We include her in all things we do with Nick, literally, if she wants to be or sometimes we just do it as a family. (ie: we all four went to Canada for 6 weeks in 2002 for conductive education therapy) Currently, Bella is 11 and she attends sibshops (workshops for sibs her age) monthly (website on my blog), and she has books for kids her age and adults on having a sibling with a disability. Isabella has never seemed to have been jealous because we include her in everything and spend one on one time with her too. She and Nick are VERY close, hang out all of the time, she's very protective and sensitive when others tease Nick or stare at him (it makes her angry/sad and we talk about that!). At her teacher conference at school last month, her teacher said she is one of the "most compassionate" students he's ever had in 5th grade and she helps kids in her class with autism without being asked to do so and is very "inclusive". I believe that has everything to do with being Nick's sibling. Whatever she feels at any time, we'll just talk to her about it and work it out! We don't want her to believe "disability" is a BAD thing, and she doesn't.
- Are there regular doctors' appointments you would have to make to monitor the illness and in particular, his deteriorating hearing, as you mentioned on the blog? What do they involve?
YES, we have alot of regular doctor appts., every three to six months with is orthopedic doctor and GI doctor, the neurologist once a year, his family doctor yearly and whenever he's sick, his audiologist and ENT every 6 months to a year, yearly hearing tests and adjustments to his hearing aids as needed, he needs new ear molds and adjustments to his leg braces yearly, and now we do PT as needed but we used to do it anywhere from three times a week to once a month, more when he was younger, less as he's gotten older.
- Has Nick received a lot of trouble from his peers for his disability?
Yes, he has had trouble many times, more than I could write about. More staring and teasing in elementary school and Jr. High, early high school, less teasing in the last few years in high school (maturity of the kids increasing and we had a school-wide disability awareness training). Terrible comments over the years. Nick's had a variety of strategies in dealing with it, depending on his age, but overall I can say, he amazes and impresses me so much at how he handles it most of the time. We've cried together over things too. We've done a lot as parents and as a family to address this issue too over the years.
- I know you mentioned the impact from your own friends and other families within the community, which just shocked and outraged me. Anything more you have to say on this, as specific/broad as you would like, would be appreciated.
Well, I know I said a lot in the blog. Overall, I think people are just ignorant and if they haven't experienced having a child or family member with a disability, they don't understand what it's like, the little and big things you deal with on a daily basis. It's an ongoing thing we've dealt with but we've weeded out a lot of good people and friends we've met along the way.
- And basically YOUR opinions/views/feelings about anything related to how your family is coping with this. I am just so interested in picking your brain, if you can't already tell, so you can share whatever you feel like as I am a keen listener.
I think, overall, we've dealt with Nick's disability the best we can. Sometimes better than others. We've felt the whole range from shock, anger, denial, acceptance, sadness, encouragement, on and on......! I think we've become very educated. The best way I can describe it is bittersweet and like a roller-coaster, a lot of ups and downs. Honestly, most of the time, it's exhausting if I think back to the beginning until now and there were times it was very dark and we didn't have or get a lot of hope when he was very young. We were depressed I'm sure. We had to decide, a firm decision, when he was about three I'm guessing, that we were going to focus on the things Nick CAN do as much as possible, instead of what he can 't do all of the time. Professionals always remind us what he CAN'T do, believe me, so it's still hard to hear those things or when we see other kids his age, but we keep reminding ourselves of how much he is doing and can do that we were told he'd never do. I'd say, our lives changed forever the day we found out Nick had a disability, in some bad ways at times, but mostly good ways, and we can't imagine our life without Nick or Bella in it. Our life revolves around both of them, and a lot of it around Nick's disability but as I said, we try to do it as a family so we're together as much as possible. I think that is what a family is all about. We'd do the same if any of us needed it. That's why I say we're a team, Team Hyndman, because we are always on each others side and biggest fans. So, no matter what happens, we'll be OK in the end because we have each other. Nick is as much of a contributor in our family as any of us, he listens to Bella and us, tries to help us, is encouraging, is funny and fun to be with, tells great stories and has a great sense of humor. He helps Bella with her homework and helps her study, shows her how to do things on the computer when she needs help, they play video games a lot together. He helps her download songs on her IPOD, etc. OK-I've written too much! Sorry!
If you have any other questions, just let me know. Hope this isn't too late and I hope it helps.
Take care,
Amy
If anyone has anything they'd like to share with this student, let me know and I'll pass it on to her.
Blessings:)
Amy
I received the following e-mail from a student/reader who lives in Australia. She gave me permission to share this but not her name, so I took her name out. Here is the e-mail:
Hi Amy (and family),
My name's _____. I'm a senior in high school in Australia. At the moment, I'm working on a major project for my English class. I am writing a mini-novella based on the true story of Tate and Nash Kemp -- and I believe you are aware of them as I noticed you posted the video on your blog. I was wondering if it would be possible to ask you a few questions about how your own family copes with the struggles of having a member with cerebral palsy, and possibly receiving some insight into the emotional and social aspects of the illness, rather than just the facts that a quick Google search can provide. It is the smaller details that will help shape my understanding. I'm hoping to discover some of the idiosyncrasies of the illness that outsiders would not be aware of. Please understand you have every right to decline my request, especially if it sounds too intrusive. Though I am aiming to be as respectful of your privacy as possible.
Thank you very much for your time,
(student)
Here's the second e-mail I received from her:
Hello,
Thank you so much for agreeing! It means a lot. Yes, Australia's really amazing, bias aside.
I totally understand. My brother's currently in California visiting his girlfriend, and they've been busy with Thanksgiving and crazy shopping!
Of course you may post this online, and, yes, if it's okay, I'd prefer my name to be kept out.
I have some, I suppose, prompt questions for you to lead you in the right direction. Use them as strictly or loosely as you like! If you would prefer not to answer one, that's no problem at all. I am appreciative enough that you have agreed to help me.
- What kind of things are necessary for your family to do every day to keep Nick's illness managed? Or, how do you help him to manage on a daily basis?
- How does Isabella cope with her brother's disability? (I'm aware this is a big and broad question so I will allow you to take it where you want it to go)
- Are there regular doctors' appointments you would have to make to monitor the illness and in particular, his deteriorating hearing, as you mentioned on the blog? What do they involve?
- Has Nick received a lot of trouble from his peers for his disability?
- I know you mentioned the impact from your own friends and other families within the community, which just shocked and outraged me. Anything more you have to say on this, as specific/broad as you would like, would be appreciated.
- And basically YOUR opinions/views/feelings about anything related to how your family is coping with this. I am just so interested in picking your brain, if you can't already tell, so you can share whatever you feel like as I am a keen listener.
I commend your participation in the online community and the courage you have to share yourself and your life openly. It is no doubt a help to myself in this situation and many others in ones similar to yours. Thank you so, so much!
(student)
Here's the responses I sent her:
Hi _____,
I'm sorry it has taken me a few days to get back to you. I hope I am not holding you up in any way!
I'm just going to copy and paste your questions and then answer them:
- What kind of things are necessary for your family to do every day to keep Nick's illness managed? Or, how do you help him to manage on a daily basis?
With Nick's CP, we use physical therapy (PT), occupational therapy (OT), and speech therapy, as well as PT in the water. Now, he only really receives PT right now and he only now goes as needed, when he's having a problem. We have to use a variety of exercises at home DAILY, including stretching to help his muscles from contracting and to manage his pain. At home, in addition to daily stretching and exercises (about 30 minutes as he is wrestling at high school right now and works out a lot for that), we got a portable whirlpool tub we can put in our bathtub (we cannot afford a jacuzzi tub or pool right now!) and he soaks 30-40 min. at night in a hot whirlpool bath with Epsom salts to help relax his muscles and help with pain, he takes medications daily for GI Reflux, allergies, and nerve damage/pain, we put bars he can hold while standing up in our garage, hallways, bathroom, and Nick's bedroom, have special rails installed on our toilet and bathtub, a special shower-head he can pull down and use in the tub, a shower chair to take showers with, ramps at all three entrances in the house, a special phone with large buttons and for hearing impaired individuals. We also use straw cups for him to drink from with handles. Nick has a service dog who can retrieve items he drops, the telephone, get him a snack, etc., and more. Nick wears hearing aids during the day and uses an FM system to stream sound from his IPOD, speakers at school, etc. We have a special smoke detector with a strobe light and a bed vibrator for hearing impaired individuals, as well as a special device that makes his bedroom light turn on and off when the doorbell rings or phone rings. He has an alarm clock that is very loud and vibrates his bed. He has bed rails (on a regular bed). He uses a wheelchair and walker to get around outside the house, as well as a Segway and he wears AFO leg/foot orthotics during the day when he's not at home to help him walk. I think that's it. Hope I'm not leaving anything out!
- How does Isabella cope with her brother's disability? (I'm aware this is a big and broad question so I will allow you to take it where you want it to go)
We just have ALWAYS, from the time she was a baby, talked about Nick's disability, read her children's books about disabilities and with pictures of people in wheelchairs, etc., answered her questions honestly at the level she was at when she asks them, she's around other kids with disabilities and adults all of the time at Nick's activities and with our friends, so it's kind of like we have "as a matter of fact" attitude about it all. We let her tell us how she feels, whatever it is, cry, whatever. We include her in all things we do with Nick, literally, if she wants to be or sometimes we just do it as a family. (ie: we all four went to Canada for 6 weeks in 2002 for conductive education therapy) Currently, Bella is 11 and she attends sibshops (workshops for sibs her age) monthly (website on my blog), and she has books for kids her age and adults on having a sibling with a disability. Isabella has never seemed to have been jealous because we include her in everything and spend one on one time with her too. She and Nick are VERY close, hang out all of the time, she's very protective and sensitive when others tease Nick or stare at him (it makes her angry/sad and we talk about that!). At her teacher conference at school last month, her teacher said she is one of the "most compassionate" students he's ever had in 5th grade and she helps kids in her class with autism without being asked to do so and is very "inclusive". I believe that has everything to do with being Nick's sibling. Whatever she feels at any time, we'll just talk to her about it and work it out! We don't want her to believe "disability" is a BAD thing, and she doesn't.
- Are there regular doctors' appointments you would have to make to monitor the illness and in particular, his deteriorating hearing, as you mentioned on the blog? What do they involve?
YES, we have alot of regular doctor appts., every three to six months with is orthopedic doctor and GI doctor, the neurologist once a year, his family doctor yearly and whenever he's sick, his audiologist and ENT every 6 months to a year, yearly hearing tests and adjustments to his hearing aids as needed, he needs new ear molds and adjustments to his leg braces yearly, and now we do PT as needed but we used to do it anywhere from three times a week to once a month, more when he was younger, less as he's gotten older.
- Has Nick received a lot of trouble from his peers for his disability?
Yes, he has had trouble many times, more than I could write about. More staring and teasing in elementary school and Jr. High, early high school, less teasing in the last few years in high school (maturity of the kids increasing and we had a school-wide disability awareness training). Terrible comments over the years. Nick's had a variety of strategies in dealing with it, depending on his age, but overall I can say, he amazes and impresses me so much at how he handles it most of the time. We've cried together over things too. We've done a lot as parents and as a family to address this issue too over the years.
- I know you mentioned the impact from your own friends and other families within the community, which just shocked and outraged me. Anything more you have to say on this, as specific/broad as you would like, would be appreciated.
Well, I know I said a lot in the blog. Overall, I think people are just ignorant and if they haven't experienced having a child or family member with a disability, they don't understand what it's like, the little and big things you deal with on a daily basis. It's an ongoing thing we've dealt with but we've weeded out a lot of good people and friends we've met along the way.
- And basically YOUR opinions/views/feelings about anything related to how your family is coping with this. I am just so interested in picking your brain, if you can't already tell, so you can share whatever you feel like as I am a keen listener.
I think, overall, we've dealt with Nick's disability the best we can. Sometimes better than others. We've felt the whole range from shock, anger, denial, acceptance, sadness, encouragement, on and on......! I think we've become very educated. The best way I can describe it is bittersweet and like a roller-coaster, a lot of ups and downs. Honestly, most of the time, it's exhausting if I think back to the beginning until now and there were times it was very dark and we didn't have or get a lot of hope when he was very young. We were depressed I'm sure. We had to decide, a firm decision, when he was about three I'm guessing, that we were going to focus on the things Nick CAN do as much as possible, instead of what he can 't do all of the time. Professionals always remind us what he CAN'T do, believe me, so it's still hard to hear those things or when we see other kids his age, but we keep reminding ourselves of how much he is doing and can do that we were told he'd never do. I'd say, our lives changed forever the day we found out Nick had a disability, in some bad ways at times, but mostly good ways, and we can't imagine our life without Nick or Bella in it. Our life revolves around both of them, and a lot of it around Nick's disability but as I said, we try to do it as a family so we're together as much as possible. I think that is what a family is all about. We'd do the same if any of us needed it. That's why I say we're a team, Team Hyndman, because we are always on each others side and biggest fans. So, no matter what happens, we'll be OK in the end because we have each other. Nick is as much of a contributor in our family as any of us, he listens to Bella and us, tries to help us, is encouraging, is funny and fun to be with, tells great stories and has a great sense of humor. He helps Bella with her homework and helps her study, shows her how to do things on the computer when she needs help, they play video games a lot together. He helps her download songs on her IPOD, etc. OK-I've written too much! Sorry!
If you have any other questions, just let me know. Hope this isn't too late and I hope it helps.
Take care,
Amy
If anyone has anything they'd like to share with this student, let me know and I'll pass it on to her.
Blessings:)
Amy
December 7, 1993 - Diagnosis Day
Hi all,
17 years ago today, December 7, 1993, our son, Nick, was officially diagnosed with cerebral palsy when he was not quite four months old. I know I wrote about this day in detail in a previous post.
I remember the day, the overcast, cold, weather, what we were wearing, my face getting hot and tears coming without control. I remember looking at Nick, my baby, thinking how much I loved him and telling him I was going to take good care of him and give him the best life. I remember my throat and chest getting so tight I couldn't talk, ALL of it. It was a defining day in our life and we had no idea what the future would hold. Thinking back, one of the hardest, most frightening things was the unknown. I still feel that way when I think of Nick going off to college and out on his own one day. I know now, though, that whatever happens, things ultimately work out and will be OK.
Blessings:)
Amy
17 years ago today, December 7, 1993, our son, Nick, was officially diagnosed with cerebral palsy when he was not quite four months old. I know I wrote about this day in detail in a previous post.
I remember the day, the overcast, cold, weather, what we were wearing, my face getting hot and tears coming without control. I remember looking at Nick, my baby, thinking how much I loved him and telling him I was going to take good care of him and give him the best life. I remember my throat and chest getting so tight I couldn't talk, ALL of it. It was a defining day in our life and we had no idea what the future would hold. Thinking back, one of the hardest, most frightening things was the unknown. I still feel that way when I think of Nick going off to college and out on his own one day. I know now, though, that whatever happens, things ultimately work out and will be OK.
Blessings:)
Amy
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