We would like to wish everyone a Happy and safe holiday! We hope you enjoy your time with friends and family and that 2010 is the best year ever!
Thank you for following our blog! We appreciate the interest and hope that in the next year we can continue to get better at this blogging thing and post not only info. about our family, but info. you may find useful. We hope to connect with more individuals with cerebral palsy and/or family members/friends of individuals with cerebral palsy. If you know of anyone who may be interested in following along, please invite them. Additionally, if you have any input or ideas, information you would like to see, please contact us and let us know. We're open to new input and ideas and are always looking to learn new things about this disability ourselves. There is always more to learn!
On another note, I must share something that happened yesterday. My Dad, Nick's PaPa, picked him up from wrestling practice and said that Nick was walking while the others were running laps and that he actually started "jogging" for a little bit. I asked, "what do you mean?" because this never crossed my mind as a possibility, ever. I mean, it is tough enough for Nick to walk and although I knew his walking has been improving, well, I just never thought of "jogging". My Dad said, YES HE WAS, he was jogging. We were thrilled and I looked at Nick with this look of exhaustion and pride in his face. Priceless. I can't wait to see this for myself. He continues to shock and inspire us with his strength and fierce determination.
Blessings:)
Amy
Tuesday, December 22, 2009
Wednesday, December 16, 2009
December 2009 update
Hi everyone!December is always so busy for us and this December is no exception! (I'm sure many of you can relate!)
We are all finally healthy and rid of the flu. We started out this month with Isabella's fourth grade holiday program which was fantastic. They sang and played the recorder and did great. We had "Santa and his helper", Uncle Frank and Aunt Marcia (Frank plays Santa for a lot of area events!), come to my parent's home and we had a fun day with the family, our nieces and nephews, and Nick's friend, Shannon, joined us. Isabella had a dance performance at Levis
Commons and got to see Santa there as well with her dance group. We also celebrated Christmas already with Greg's side of the family last weekend as everyone is unable to get together on Christmas or lives out of town, etc. The kids have had lots going on at school (projects, reports, etc.) as they are getting ready for the holiday break. Combined with the usual family activities, it seems like every day in December, at least the weekends, is double or triple booked. We were not able to make it to several of the Christmas parties we normally go to as they were on the same day as other events, etc.
One big thing going on this month is Nick's wrestling. I wrote previously about Nick joining the wrestling team at Perrysburg High School. After having the flu, he got back into practice. It's been tough on him because it is a tough sport and tough on everyone and then with having cerebral palsy, the physical pain and exhaustion has been difficult to watch. He is loving it though. He had a couple of matches so far and lasted 19 and 14 seconds, then 2 min. 24 seconds. While I think he's disappointed at that and kept apologizing to the coaches and team, we reminded him that he's never wrestled before (this is brand new), he's just started, and he has cerebral palsy to top it off, so he has to use different techniques, etc . No matter what, it's not good or bad, it's just a fact, the CP is always a factor and it seems as if Nick doesn't think about that. The first match, last Thursday December 10th, as a mother, I was practically in tears over the anticipation and waiting. It's not easy to watch someone doing those things to your child at all. I did ok though and was so happy for him! My Dad was crying when it was over just because Nick did it. ( me almost too!) He's so determined to do this. I have to admit, I am not "loving" it as a "mom" but I totally support Nick and his decision on this 100% and from his writings, I know why he is doing it and understand it. (see previous blog where I included Nick's writing about this!) So, we continue to take it day by day, week by week, and see where it goes. However it turns out in the end, Nick has done it. We hope to get some video of it and I hope to be able to put that on the computer and on this blog in the future. One side note....Nick's walking is probably the best it's ever been. It's probably because of the working out and his gaining strength, but I was shocked when I saw him walk out to and from his match! WOW!!!! It's hard to explain this but when you get a picture of someone in your head, I am so used to seeing Nick in his wheelchair, in his Segway, or his walker. I am not used to seeing him standing up straight, walking without any assistance or equipment, no leg braces, just walking, and not falling. I was stunned and speechless really. It took my breath away!:) This was different than his walking I've seen prior to this. It was stronger, more stable, and it's hard to picture but now I can't get that picture out of my head. Anyhow, GO NICK!!!!!!:)
I can't believe it's December 16th and I have not even thought about Christmas Cards yet! Last year, Nick was doing intensive rehab. Thanksgiving through the New Year, five or six days a week, about five hours a day, so we never got to it. I don't have that excuse this year! Time is just flying by and the month is filled with fun, but a lot of activities! I can't wait to have the kids home over Christmas break and to spend time with them:)
I want to thank everyone for reading the blog and keeping up with us. I hope to get more readers this year and to make contact with others, which was one of the main reasons I started this blog. I hope everyone is having a wonderful month so far! I'll be writing more soon!
Blessings:)
Amy
Friday, December 4, 2009
"The Dog Ate The Hearing Aid" and "The Drowning"
In 2001, when Nick was 8-years old and in the third grade, he was diagnosed with a bilateral progressive hearing loss.
To be honest, we took it pretty hard. We had 8 years to kind of get used to the idea that he had cerebral palsy and at that point, we kind of knew what that meant for HIM. Although we still today go through ups and downs emotionally regarding Nick's disability, over time, it does get easier and you choose to live your life in the best way possible. Anyhow, it felt like a shock to us, a smack in the face, although it shouldn't have been.
We thought Nick took more time to respond to people because of his cerebral palsy. He did have more difficulty getting his words out. Then someone asked us when we last had his hearing checked. We couldn't even remember the last time, in part because of everything else Nick always had going on (appointments, therapy, etc.). We took him, not really expecting a problem and we were wrong. We should have remembered that when Nick was an infant and he had the jaundice (which caused the brain damage which caused the CP), we had to do a full exchange transfusion of his blood, literally, to save his life at the time. (long story, a lot of medical details I won't get into!) We had to sign a paper saying we understood this could cause nerve damage to his ears, among lots of other things and our focus was on saving his life. We just forgot about that I guess with so many other things going on. So, we had this whole new disability in and of itself to learn about, deal with, etc. That was why it was harder for us I guess.
We educated ourselves once again, reading books, etc. Nick at the time had a mild hearing loss in one ear and a moderate hearing loss in the other. After seeing an ENT who specializes in hearing impairment, he confirmed Nick had nerve damage and that his hearing loss would be progressive to the point he'll eventually "lose his hearing" per the doctor. He added that Nick would be a good candidate for a cochlear implant (CI) when that time came. You have to have a profound hearing loss to get a CI.
Nick needed hearing aides. We soon found out that our insurance (and most others) do not cover hearing aides as they are not medically necessary. We felt (and still feel) that Nick's hearing was necessary, especially while in school, and he couldn't sign due to his fine motor delays from the cerebral palsy, etc. So, we ordered the hearing aides and paid $5600 for the pair of digital hearing aides, which are best because they can be adjusted and take out background noise. (hearing aides will often pick up ALL noises, even ones you don't want them to!) It was a lot of money for us then and just to note, we just bought his third pair this year. Then we bought a $3600 FM system so he could use this to hear people speaking, focus on them, etc. Nick (and Bella) are worth it, but this was a lot of money for us, and we had to make a lot of other sacrifices I won't go into to get these. It was stressful for us adjusting to Nick's hearing loss, the financial stress of the hearing aides, and the care of them too. Of course, we never told Nick of that and he still doesn't know.
We did stress with Nick though that these hearing aides and the FM system did cost a lot of money and were hard to get and he had to take care of them. He couldn't take them out and set them down anywhere, etc. because we didn't want him to lose them. We did insure them, etc. We stressed this a lot.
The VERY FIRST DAY Nick had his new hearing aides, our boston terrier, Oreo, came up to Nick, who always is on the floor at home, was licking Nick's face, licked his ear, took out the hearing aid, bit into it and started chewing it all before we could get a sentence out! It was like it was in slow motion. I was watching the whole thing. I can't even explain the horror of it all. I screamed, which scared Nick and Oreo, Oreo spit out the chewed up hearing aid, I did tell Nick it wasn't his fault, but then Greg and I were crying. Just thinking of the cost of them, we just got them, etc., got the ear molds fitted for Nick's ears, etc. We had to call the audiologist and tell them, "the dog ate the hearing aid"!!! Luckily for us, we only had to pay 10% of one, $280, to get it fixed, which was a lot of money to me at the time too! But, it was better than $2800 I guess. Anyhow, at the time, it wasn't funny at all, but now we laugh about it.
Then one day later that school year, Nick came home and had no hearing aides. He said he took them out because they were bothering him and the substitute para-professional "put them somewhere" and they couldn't find them before he left school. I was not happy with him. I lost it and immediately raised my voice, telling him how irresponsible that was and if they are lost, he would be grounded. We were both upset. I looked through everything, called the school, left a voice mail. Luckily for me, the principal got the message after hours, went into the classroom and found the hearing aides on top of a tall cabinet, called me. I told Nick and I told him I was sorry for raising my voice and to please be more careful. He seemed fine. He didn't seem upset. We went on with our evening. After dinner, Greg was giving Nick a bath. Greg was telling Nick that he had to be careful and not take his hearing aides out and if he did, to put them in the storage unit we gave him, like we always told him. Nick then told Greg, "Yeah, Mom was so mad at me she said she would drown me if we didn't find them!" Well, as you can imagine, Greg immediately told me this, I of course, was mortified and clarified this with them and we all laughed so hard. I just couldn't get it out of my mind that my son would think I could even say such a thing to him. I had lots of talks with him and felt so badly that he thought this. He just laughed every time I brought it up! Not to mention, I didn't want him telling people this. Can you imagine Children's Services getting a call if someone didn't hear the whole story? I didn't tell anyone this for awhile, but it ended up being so funny to us, we just had to tell the story!:) I told Nick, boy, I guess you really do need these hearing aides:)
We have so many stories like this. Sometimes, having sense of humor and being able to laugh at the ridiculousness of the situation helps a lot. Otherwise, I think we'd lose it at times!
The whole hearing aid situation, the cost, not being covered by insurance, is something that makes us really angry when we let it. We have of course, appealed, looked into it, talked to anyone we could think of, contacted agencies. We don't qualify for anything. It's just something we have to accept and we do because Nick needs it and to us, there is no other option. It's too important! I don't think a lot of people realize how many things like this are not covered by insurance. They enhance the quality of life so much and are not considered medically necessary. I guess you don't know until you go through it or know someone personally.
I hope you enjoyed these little stories. A few of many. I'll tell more later.........
Blessings:)
Amy
To be honest, we took it pretty hard. We had 8 years to kind of get used to the idea that he had cerebral palsy and at that point, we kind of knew what that meant for HIM. Although we still today go through ups and downs emotionally regarding Nick's disability, over time, it does get easier and you choose to live your life in the best way possible. Anyhow, it felt like a shock to us, a smack in the face, although it shouldn't have been.
We thought Nick took more time to respond to people because of his cerebral palsy. He did have more difficulty getting his words out. Then someone asked us when we last had his hearing checked. We couldn't even remember the last time, in part because of everything else Nick always had going on (appointments, therapy, etc.). We took him, not really expecting a problem and we were wrong. We should have remembered that when Nick was an infant and he had the jaundice (which caused the brain damage which caused the CP), we had to do a full exchange transfusion of his blood, literally, to save his life at the time. (long story, a lot of medical details I won't get into!) We had to sign a paper saying we understood this could cause nerve damage to his ears, among lots of other things and our focus was on saving his life. We just forgot about that I guess with so many other things going on. So, we had this whole new disability in and of itself to learn about, deal with, etc. That was why it was harder for us I guess.
We educated ourselves once again, reading books, etc. Nick at the time had a mild hearing loss in one ear and a moderate hearing loss in the other. After seeing an ENT who specializes in hearing impairment, he confirmed Nick had nerve damage and that his hearing loss would be progressive to the point he'll eventually "lose his hearing" per the doctor. He added that Nick would be a good candidate for a cochlear implant (CI) when that time came. You have to have a profound hearing loss to get a CI.
Nick needed hearing aides. We soon found out that our insurance (and most others) do not cover hearing aides as they are not medically necessary. We felt (and still feel) that Nick's hearing was necessary, especially while in school, and he couldn't sign due to his fine motor delays from the cerebral palsy, etc. So, we ordered the hearing aides and paid $5600 for the pair of digital hearing aides, which are best because they can be adjusted and take out background noise. (hearing aides will often pick up ALL noises, even ones you don't want them to!) It was a lot of money for us then and just to note, we just bought his third pair this year. Then we bought a $3600 FM system so he could use this to hear people speaking, focus on them, etc. Nick (and Bella) are worth it, but this was a lot of money for us, and we had to make a lot of other sacrifices I won't go into to get these. It was stressful for us adjusting to Nick's hearing loss, the financial stress of the hearing aides, and the care of them too. Of course, we never told Nick of that and he still doesn't know.
We did stress with Nick though that these hearing aides and the FM system did cost a lot of money and were hard to get and he had to take care of them. He couldn't take them out and set them down anywhere, etc. because we didn't want him to lose them. We did insure them, etc. We stressed this a lot.
The VERY FIRST DAY Nick had his new hearing aides, our boston terrier, Oreo, came up to Nick, who always is on the floor at home, was licking Nick's face, licked his ear, took out the hearing aid, bit into it and started chewing it all before we could get a sentence out! It was like it was in slow motion. I was watching the whole thing. I can't even explain the horror of it all. I screamed, which scared Nick and Oreo, Oreo spit out the chewed up hearing aid, I did tell Nick it wasn't his fault, but then Greg and I were crying. Just thinking of the cost of them, we just got them, etc., got the ear molds fitted for Nick's ears, etc. We had to call the audiologist and tell them, "the dog ate the hearing aid"!!! Luckily for us, we only had to pay 10% of one, $280, to get it fixed, which was a lot of money to me at the time too! But, it was better than $2800 I guess. Anyhow, at the time, it wasn't funny at all, but now we laugh about it.
Then one day later that school year, Nick came home and had no hearing aides. He said he took them out because they were bothering him and the substitute para-professional "put them somewhere" and they couldn't find them before he left school. I was not happy with him. I lost it and immediately raised my voice, telling him how irresponsible that was and if they are lost, he would be grounded. We were both upset. I looked through everything, called the school, left a voice mail. Luckily for me, the principal got the message after hours, went into the classroom and found the hearing aides on top of a tall cabinet, called me. I told Nick and I told him I was sorry for raising my voice and to please be more careful. He seemed fine. He didn't seem upset. We went on with our evening. After dinner, Greg was giving Nick a bath. Greg was telling Nick that he had to be careful and not take his hearing aides out and if he did, to put them in the storage unit we gave him, like we always told him. Nick then told Greg, "Yeah, Mom was so mad at me she said she would drown me if we didn't find them!" Well, as you can imagine, Greg immediately told me this, I of course, was mortified and clarified this with them and we all laughed so hard. I just couldn't get it out of my mind that my son would think I could even say such a thing to him. I had lots of talks with him and felt so badly that he thought this. He just laughed every time I brought it up! Not to mention, I didn't want him telling people this. Can you imagine Children's Services getting a call if someone didn't hear the whole story? I didn't tell anyone this for awhile, but it ended up being so funny to us, we just had to tell the story!:) I told Nick, boy, I guess you really do need these hearing aides:)
We have so many stories like this. Sometimes, having sense of humor and being able to laugh at the ridiculousness of the situation helps a lot. Otherwise, I think we'd lose it at times!
The whole hearing aid situation, the cost, not being covered by insurance, is something that makes us really angry when we let it. We have of course, appealed, looked into it, talked to anyone we could think of, contacted agencies. We don't qualify for anything. It's just something we have to accept and we do because Nick needs it and to us, there is no other option. It's too important! I don't think a lot of people realize how many things like this are not covered by insurance. They enhance the quality of life so much and are not considered medically necessary. I guess you don't know until you go through it or know someone personally.
I hope you enjoyed these little stories. A few of many. I'll tell more later.........
Blessings:)
Amy
Sunday, November 29, 2009
The Most Memorable Thanksgiving - Nick's first "solo" walk
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
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
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.....
Tuesday, October 27, 2009
Life Without Limits:
Life Without Limits: United Cerebral Palsy's Life Without Limits: In BriefLife Without Limits is a national movement to empower people with disabilities to envision and build a better future for themselves, their community, and society. It's a future without limits, built on innovative solutions and the harnessing of new communications technologies, medical advances, and demographic trends that will change the landscape for people with disabilities. Life Without Limits is creating avenues for people with disabilities to experience full lives of believable hope.
Monday, October 26, 2009
Nick's recent writing October 09
Nick recently wrote this as part of a humanities assignment. It's very telling............Amy
How I’ve Changed
Sixteen years old. Time flies by so fast. I enjoy every minute of my life, yet there are moments in my life that I wish never had to happen. But if I never had the bad moments, would I enjoy every moment of my life? Of course, ten or five years ago, I never thought about these things. Because in that time, I’ve changed, I really never had any bad moments. Never thought I would ever go through any sufferings, never thought I would have any life changing moments. I was always focused on the present, I never really thought about the future. Suddenly, that all changed, I changed.
As a kid, I questioned everything. I was very observant, and would always ask questions. Questions about my disability mostly, “why can’t I walk like the other kids? why am I different?, why are kids so mean to me?, what’s wrong with me?, why me?” I just could never wrap my head around why I didn’t look like every other kid, or why kids would tease me. It took me a while to realize what I realize now. I realize now, that it’s just the way God made me, and I know he has a special purpose for me. He wants me to go through everything I go through for a reason. I just don’t know what that reason is yet, I may never know, He might want someone else to know my purpose instead of me. I still ask one of the questions that I asked when I was a kid, and that one is “why me?”
I was told when I was born I would never walk or talk. That has been a motivation for me my whole life to accomplish something that most people take for granted, to walk. When I was younger, I never thought I would have to go through much work or much pain to accomplish this. I was wrong. My first year of jr. high, whenever I would walk in my walker, every step hurt. So, the process of pain began. The doctor told me that the only way to fix it would be to wear casts on my legs for six weeks. The six weeks were absolutely brutal. I might have gotten three hours of sleep a night, took about twenty to thirty pain pills a day. I realized then that if I were going to achieve this goal, I would have to go through a lot of pain. The casting was actually unsuccessful, they worked for a little while, but then my feet began to turn back inward. So, two years later we tried again. I was very upset because I knew what was coming. Again, after a while, the casting was unsuccessful. We realized that there was only one thing left to do. There was only one thing that would be a permanent solution. That was to perform major surgery. The reason why the doctors didn’t do it before that time, was because they knew that the surgery would be ten times more painful then the casting. They were right. I never have felt as much pain as I did for the first six weeks after the surgery. The day after the surgery, the doctor realized something was wrong with the casting that they did. So, they had to redo the casting, and the way I describe that pain that I felt at that moment is it felt like an old-fashion amputation. It felt like they were amputating my leg with no medicine and I was awake. It was the worst half hour of my life. The surgery was successful, but due to complications, I now have no feeling on the surface of my left foot and it is hypersensitive to touch. I receive an electrical jolt in my foot every five seconds due to nerve damage.
The reason why I am mentioning all about the pain I’ve been through is because I believe that pain is the one thing if anything that has changed me. Like I said, when I was young, I didn’t think about the future, I didn’t think anything bad could happen to me, I thought that “learning” to walk would be just as easy as it is for everyone else. Now, every time I go through something painful, it makes me appreciate my life more. I now realize that in order to achieve this goal of walking, I’m going to have to go to hell and back to achieve it. I no longer just think about now. I think about everything I’m going to have to go through to accomplish what I want to accomplish in life. Pain gives me appreciation for my life, gives me strength, and gives me the sense of accomplishment. And instead of asking questions all the time, I’ve learned to accept myself, and just live my life. Pain, a small word that has changed me in a big way.
How I’ve Changed
Sixteen years old. Time flies by so fast. I enjoy every minute of my life, yet there are moments in my life that I wish never had to happen. But if I never had the bad moments, would I enjoy every moment of my life? Of course, ten or five years ago, I never thought about these things. Because in that time, I’ve changed, I really never had any bad moments. Never thought I would ever go through any sufferings, never thought I would have any life changing moments. I was always focused on the present, I never really thought about the future. Suddenly, that all changed, I changed.
As a kid, I questioned everything. I was very observant, and would always ask questions. Questions about my disability mostly, “why can’t I walk like the other kids? why am I different?, why are kids so mean to me?, what’s wrong with me?, why me?” I just could never wrap my head around why I didn’t look like every other kid, or why kids would tease me. It took me a while to realize what I realize now. I realize now, that it’s just the way God made me, and I know he has a special purpose for me. He wants me to go through everything I go through for a reason. I just don’t know what that reason is yet, I may never know, He might want someone else to know my purpose instead of me. I still ask one of the questions that I asked when I was a kid, and that one is “why me?”
I was told when I was born I would never walk or talk. That has been a motivation for me my whole life to accomplish something that most people take for granted, to walk. When I was younger, I never thought I would have to go through much work or much pain to accomplish this. I was wrong. My first year of jr. high, whenever I would walk in my walker, every step hurt. So, the process of pain began. The doctor told me that the only way to fix it would be to wear casts on my legs for six weeks. The six weeks were absolutely brutal. I might have gotten three hours of sleep a night, took about twenty to thirty pain pills a day. I realized then that if I were going to achieve this goal, I would have to go through a lot of pain. The casting was actually unsuccessful, they worked for a little while, but then my feet began to turn back inward. So, two years later we tried again. I was very upset because I knew what was coming. Again, after a while, the casting was unsuccessful. We realized that there was only one thing left to do. There was only one thing that would be a permanent solution. That was to perform major surgery. The reason why the doctors didn’t do it before that time, was because they knew that the surgery would be ten times more painful then the casting. They were right. I never have felt as much pain as I did for the first six weeks after the surgery. The day after the surgery, the doctor realized something was wrong with the casting that they did. So, they had to redo the casting, and the way I describe that pain that I felt at that moment is it felt like an old-fashion amputation. It felt like they were amputating my leg with no medicine and I was awake. It was the worst half hour of my life. The surgery was successful, but due to complications, I now have no feeling on the surface of my left foot and it is hypersensitive to touch. I receive an electrical jolt in my foot every five seconds due to nerve damage.
The reason why I am mentioning all about the pain I’ve been through is because I believe that pain is the one thing if anything that has changed me. Like I said, when I was young, I didn’t think about the future, I didn’t think anything bad could happen to me, I thought that “learning” to walk would be just as easy as it is for everyone else. Now, every time I go through something painful, it makes me appreciate my life more. I now realize that in order to achieve this goal of walking, I’m going to have to go to hell and back to achieve it. I no longer just think about now. I think about everything I’m going to have to go through to accomplish what I want to accomplish in life. Pain gives me appreciation for my life, gives me strength, and gives me the sense of accomplishment. And instead of asking questions all the time, I’ve learned to accept myself, and just live my life. Pain, a small word that has changed me in a big way.
Friday, October 23, 2009
Charger passed and is officially Nick's!!
Great news tonight! Charger passed his 6 month certification/public access test through assistance dogs of America and is he officially being turned over in ownership to us/Nick! YEAH:) He is officially on team Hyndman, part of our family! We have to contact the county auditor's office to get things officially transferred from ADAI to us. One thing though, we have to continue to monitor his weight and send it to them from the vet every 2 weeks or so. Once we get his weight back on track, which it is, all will be good.
Charger did great. He is so smart and listened to Nick. They are so close and bonded and there are so many things Charger can help Nick with and that will continue to grow and Nick continues to take very good care and spend a great deal of time caring for Charger. It's a beautiful relationship.
We can't wait to see what the future brings for Nick and Charger. One more thing....Nick wants to wrestle at PHS and I think he'll be able to, but we'll know more next week at the parents' meeting and when we speak to the coach. Nick has spoken to him in detail and attended a meeting and it looks as if the coach is very inclusive and seemed very supportive according to Nick and was like, "how can we make this work?" Nick is excited for many reasons. I'd like to have Nick write about this more himself on this blog soon.
Until next time....
Blessings:)
Amy
Charger did great. He is so smart and listened to Nick. They are so close and bonded and there are so many things Charger can help Nick with and that will continue to grow and Nick continues to take very good care and spend a great deal of time caring for Charger. It's a beautiful relationship.
We can't wait to see what the future brings for Nick and Charger. One more thing....Nick wants to wrestle at PHS and I think he'll be able to, but we'll know more next week at the parents' meeting and when we speak to the coach. Nick has spoken to him in detail and attended a meeting and it looks as if the coach is very inclusive and seemed very supportive according to Nick and was like, "how can we make this work?" Nick is excited for many reasons. I'd like to have Nick write about this more himself on this blog soon.
Until next time....
Blessings:)
Amy
Sunday, October 18, 2009
I See You
I See You
My dearest Nick, I see YOU.
Some people may look at you and see a boy with cerebral palsy. I see a
BOY. I see a boy who is loving and sweet and funny. I see a handsome boy with big beautiful brown eyes and a smile that lights up a room. I see a boy who loves to play, who loves sports, plays baseball, rides horses, loves music, and is very, very smart. I see a boy who is wise beyond his years and loves his family and friends and cares about others he does not even know personally.
Some people may look at you and see a boy who struggles to walk and talk and who cannot run. Some people may see a boy who has limitations. I see a boy who works harder than anyone I know to do all of the things other people do and take for granted. I see a boy with ENDLESS POSSIBILITIES.
Some people may see a boy with limits to his dreams because of his disability. I see a boy who has no limits to his dreams because in his mind, he dreams to play sports and run and he dreams endless dreams for himself. Some people may look at you and see a boy who gets frustrated because of his disability. I see a boy who tried harder than anyone I know and even when he is sad and frustrated, he is positive in the face of his challenges. I see a boy who never gives up and keeps on trying even when others would give up.
Nick, you may think that other people see your disability instead of YOU, but they do not. If they take the time to get to know you, they see YOU. I see YOU. You are the most amazing person I know and I am grateful God has let me be your Mom. I see and have the most amazing son anyone could ask for. When you are feeling low or facing a challenge, remember who you are and that I see YOU. I see the incredible, wonderful YOU.
Love,
Mom
August 2001
I wrote that for Nick when he was 8 years-old, 8 years ago now. He is a young man now, not a boy, but this is still relevant for him today. He still experiences this problem today and I got this out again to remind him of what I want him to know.
I was recently asked to be an Advisory Board member at The Ability Center of Greater Toledo (www.abilitycenter.org) to address issues of community inclusion for individuals with disabilities. I attended our first meeting this past Friday and I feel honored to be part of a team with such qualified individuals and hope to learn a lot and contribute a lot. There's a lot to do! We were fortunate to have Derrick Dufresne, a consultant (and more) re: disability issues. During our discussions, we talked about one consistent fact that continues to come up, which is the fact that individuals with disabilities of all ages express that they are lonely and are socially isolated. I wasn't suprised as I have heard this from many individuals with disabilities and their family members in my work, but also because we live this with Nick. Nick has expressed this for YEARS, back when he was 8 and I wrote "I See You" and still today. We've done everything we know as parents to address this and "make it better". I've read tons of books, including one on facilitating friendships between kids with disabilities and kids without disabilities, and more. I've talked to people and I bet, if you came up with a suggestions, we've already tried it. So has Nick. We can only hope he continues to put himself out there and keep trying, live his life fully, and as his peers "mature", they will take more time out to get to know him, SPEND TIME with him. I've always said, there is a big difference between being "friendly", saying "hello", etc., than being a "friend". Big difference and Nick knows this too! Now, I hope with my work on the ACT Advisory Board, this will be one more small way to address this issue for Nick and others. If we can get out there in the community with businesses and schools and get them to really, meaningfully serve and employ individuals with disabilities (with supports from ACT and other disability agencies of course), then maybe people will start to see individuals with disabilities as "INDIVIDUALS" first, and their disability as only one small part of what makes them who they are. I'm not naive enough to think this will happen anytime soon. We have to start though, one person, one business, one day at a time. In the meantime, Nick, keep doing what you are doing and remember who you are and that I (and your Dad and Bella) see and love YOU and we're here for you:)
Blessings:)
Amy
My dearest Nick, I see YOU.
Some people may look at you and see a boy with cerebral palsy. I see a
BOY. I see a boy who is loving and sweet and funny. I see a handsome boy with big beautiful brown eyes and a smile that lights up a room. I see a boy who loves to play, who loves sports, plays baseball, rides horses, loves music, and is very, very smart. I see a boy who is wise beyond his years and loves his family and friends and cares about others he does not even know personally.
Some people may look at you and see a boy who struggles to walk and talk and who cannot run. Some people may see a boy who has limitations. I see a boy who works harder than anyone I know to do all of the things other people do and take for granted. I see a boy with ENDLESS POSSIBILITIES.
Some people may see a boy with limits to his dreams because of his disability. I see a boy who has no limits to his dreams because in his mind, he dreams to play sports and run and he dreams endless dreams for himself. Some people may look at you and see a boy who gets frustrated because of his disability. I see a boy who tried harder than anyone I know and even when he is sad and frustrated, he is positive in the face of his challenges. I see a boy who never gives up and keeps on trying even when others would give up.
Nick, you may think that other people see your disability instead of YOU, but they do not. If they take the time to get to know you, they see YOU. I see YOU. You are the most amazing person I know and I am grateful God has let me be your Mom. I see and have the most amazing son anyone could ask for. When you are feeling low or facing a challenge, remember who you are and that I see YOU. I see the incredible, wonderful YOU.
Love,
Mom
August 2001
I wrote that for Nick when he was 8 years-old, 8 years ago now. He is a young man now, not a boy, but this is still relevant for him today. He still experiences this problem today and I got this out again to remind him of what I want him to know.
I was recently asked to be an Advisory Board member at The Ability Center of Greater Toledo (www.abilitycenter.org) to address issues of community inclusion for individuals with disabilities. I attended our first meeting this past Friday and I feel honored to be part of a team with such qualified individuals and hope to learn a lot and contribute a lot. There's a lot to do! We were fortunate to have Derrick Dufresne, a consultant (and more) re: disability issues. During our discussions, we talked about one consistent fact that continues to come up, which is the fact that individuals with disabilities of all ages express that they are lonely and are socially isolated. I wasn't suprised as I have heard this from many individuals with disabilities and their family members in my work, but also because we live this with Nick. Nick has expressed this for YEARS, back when he was 8 and I wrote "I See You" and still today. We've done everything we know as parents to address this and "make it better". I've read tons of books, including one on facilitating friendships between kids with disabilities and kids without disabilities, and more. I've talked to people and I bet, if you came up with a suggestions, we've already tried it. So has Nick. We can only hope he continues to put himself out there and keep trying, live his life fully, and as his peers "mature", they will take more time out to get to know him, SPEND TIME with him. I've always said, there is a big difference between being "friendly", saying "hello", etc., than being a "friend". Big difference and Nick knows this too! Now, I hope with my work on the ACT Advisory Board, this will be one more small way to address this issue for Nick and others. If we can get out there in the community with businesses and schools and get them to really, meaningfully serve and employ individuals with disabilities (with supports from ACT and other disability agencies of course), then maybe people will start to see individuals with disabilities as "INDIVIDUALS" first, and their disability as only one small part of what makes them who they are. I'm not naive enough to think this will happen anytime soon. We have to start though, one person, one business, one day at a time. In the meantime, Nick, keep doing what you are doing and remember who you are and that I (and your Dad and Bella) see and love YOU and we're here for you:)
Blessings:)
Amy
Tuesday, October 13, 2009
Useful Links
I have added a "useful links" section to the blog (on the right side). I'll update this as I get new information as well. Please feel free to contact me by posting on this blog and/or e-mailing me at amyhyndman@buckeye-express.com with any links you think may be useful to add or any other useful information for this blog.
Thank you:)
Amy
Thank you:)
Amy
The "R" Word
The Disability Studies Program presents
What’s the big deal
about the “R” word?
“Retard”
Is it hate speech or is it funny.
Is a term for speech that attacks or disparages
a person or group of people
based on their social or ethnic group.
See the film that sparked a national controversy
and a film response.
Intended to excite laughter or
amusement, facetious, humorous.
Come and judge for yourself.
When: October 27, 2009
Where: Memorial Field House Room 1910
Time: 12:45- 4:00 p.m.
The above information was sent to me by a friend, Tim Harrington, Executive Director, of The Ability Center. I thought, "thank goodness" someone is addressing this. (The Disability Studies Program at The University of Toledo). The use of this word has bothered me forever. I hear so many young people use this word like it is "nothing" and I think, "who or what is raising you and teaching you?" ??????? I don't think it is any different than using the "N" word, they are not just words, it is the KNOWN meaning and intention behind the word, whether it is used to describe a person or something else. Sensitivity training 101.
When Nick was three, we walked to the park, in his special stroller, and I went to put him on the swing. There were three kids that were there and one of them said, "hey look at that retard", referring to Nick. Nick didn't necessarily know what the word meant at that age, but he knew it was not good and they were talking about him and he was (is) a smart kid. He immediately started saying "No!" and kicking and started crying. Then I started crying and we walked 2 blocks home crying and that was the first time I had to sit down with Nick and talk to him about kids teasing him and what that word means, at his level at the time of course. I remember it vividly. Since then, I have several similar stories to tell, people saying these things about Nick and teasing him, including the use of the "R" word. So, no one can ever convince me that it is a harmless "word".
Blessings:)
Amy
What’s the big deal
about the “R” word?
“Retard”
Is it hate speech or is it funny.
Is a term for speech that attacks or disparages
a person or group of people
based on their social or ethnic group.
See the film that sparked a national controversy
and a film response.
Intended to excite laughter or
amusement, facetious, humorous.
Come and judge for yourself.
When: October 27, 2009
Where: Memorial Field House Room 1910
Time: 12:45- 4:00 p.m.
The above information was sent to me by a friend, Tim Harrington, Executive Director, of The Ability Center. I thought, "thank goodness" someone is addressing this. (The Disability Studies Program at The University of Toledo). The use of this word has bothered me forever. I hear so many young people use this word like it is "nothing" and I think, "who or what is raising you and teaching you?" ??????? I don't think it is any different than using the "N" word, they are not just words, it is the KNOWN meaning and intention behind the word, whether it is used to describe a person or something else. Sensitivity training 101.
When Nick was three, we walked to the park, in his special stroller, and I went to put him on the swing. There were three kids that were there and one of them said, "hey look at that retard", referring to Nick. Nick didn't necessarily know what the word meant at that age, but he knew it was not good and they were talking about him and he was (is) a smart kid. He immediately started saying "No!" and kicking and started crying. Then I started crying and we walked 2 blocks home crying and that was the first time I had to sit down with Nick and talk to him about kids teasing him and what that word means, at his level at the time of course. I remember it vividly. Since then, I have several similar stories to tell, people saying these things about Nick and teasing him, including the use of the "R" word. So, no one can ever convince me that it is a harmless "word".
Blessings:)
Amy
Sunday, October 11, 2009
Nick's Homecoming
Everything I just wrote is the truth and that is what we have told and will tell people when they ask us about it. There is, however, a bit of a back-story to this event with a "cerebral palsy twist". It started about a month ago when Nick told us he had asked Shannon to homecoming. We were pleasantly surprised and knew this took a lot of courage for him to ask her. Our thoughts immediately turned to, "how is this going to work?" I know that may sound ridiculous to some and you may laugh. For starters, Nick has never attended a dance or anything like this at school before. We were thrilled and hopeful for him. We know Nick and we spoke to him about his concerns. We knew he had them and we were right, because we know him so well. First, he was concerned about eating in front of Shannon. I mean, for Nick, he has involuntary movements and also fine motor delays, meaning he has trouble using utensils and it can be difficult for him to eat like others do. Sometimes, this can be messy. Usually, Nick is very self-conscious about this and over the years, we have developed some strategies to make this easier, helping him at times, cutting food up so it is easier for him, using a straw, eating "less messy" food, even if this means he prefers the taste of the "messier" food. At home, of course, Nick is free and feels free to be himself and doesn't worry about this stuff.
The second concern Nick had was, what if he needs to use the restroom at the dance and he has no one to help him undo his belt and button on his pants. What if he needs help with something? (of course, we say "ask", but this is his first date so to speak so I can understand why he wouldn't want to have to do that!) He didn't know if he could dance out of his wheelchair and if Shannon would want to dance with him in his chair. He said he REALLY wanted to dance a few dances at least out of his chair. What if he fell? What if he couldn't hear in the dance? Of course, if he wears his hearing aids, will it be "too loud?" The pick up everything, sometimes he has to take them out at events. What if no one hangs out with them? All of these things were going through his head as we had suspected and he told us so.
So, we started strategizing like we normally do. This is something that just comes as second nature. We want him to do this and we want him to be "out there" living and have these experiences and we know he can do it, but it we're admittedly concerned about some of these details too. So, we took him to Kohls to get a whole new outfit. That was fun. We had to get shoes that are almost three sizes bigger than his foot so he can wear his AFO's (leg braces, Ankle-Foot Orthotics) which he didn't want to do, but he knew he had to if he was going to have any chance of being able to stand up out of his wheelchair and dance on his feet. We found the shoes that fit perfectly over the AFOs. Then, we knew Nick usually gets food on his clothing when he eats, so we bought TWO shirts and TWO ties, identical, so if he did get it all messy, when we picked them up to take them from the restaurant to the dance, he could change and not be self-conscious about that. Then he could eat and not worry. Then we and my Dad practiced dancing with Nick, slow-dancing, after school most days in his AFOs so he could learn what to do and what that felt like, to be on his feet and balance himself. We talked about how he could handle various situations too, like falling, etc. The bottom line is, we told him to just have fun and enjoy himself, be honest, tell Shannon when odd situations arise and talk about it, laugh about it, and if she could see beyond his chair to say "yes" to go to the dance, she obviously likes him for who he is. We said, "it's not like she doesn't KNOW you have CP! Right?" News flash......Nick has CP! We laughed about all of that.
Finally, the night before the dance, we took Nick to Olive Garden for a "trial run". That was quite a sacrifice, eating a good meal at one of our favorite restaurants:) (smile) We went over the menu. Nick wanted something that would take the least effort,, that he liked of course, so he decided upon pizza. (Even though his favorite is spaghetti and meatballs, which he gets plenty of, believe me!) We went over the straw, spoke to the staff and made sure if he needed someone to help cut things up, they would. Nick didn't want to have to worry about asking all of this at dinner.
Nick didn't sleep much the night before, pretty normal I guess. Greg spent about two hours getting him ready, BOTH sets of his grandparents came over for pictures and we all traveled in caravan-style to Shannon's house where we and her father took a significant amount of pictures. Nick wrote something special for Shannon and gave her an Elmo, one of her favorites. Nick didn't seem to mind the fact that we were all there and they both indulged us our moments to take so many pictures. We then took them to dinner and ate at a near-by restaurant so we could be available if Nick needed anything and to pick them up when they were finished. He texted Greg shortly into dinner with a few "technical" questions and then texted and said it was "all good, having a great time!" They went to the dance and called to come back to our house to hang out a couple of hours later. Nick and Shannon both said they had a good time, but it was SO LOUD they couldn't talk, so they wanted to come here to hang out. They hung out here for about an hour and a half (not with us!) and Greg and Nick took Shannon home.
A few details that Nick gave us afterwards.....first he had a great time. Second, he said, tons of people came up and said hello, he introduced Shannon, but no one really hung out with them at all, so they two of them just hung out together. He didn't say this was bad, just a fact. Not sure what I think about that, but if he's ok, so am I. He said he danced a few dances with Shannon standing up, slow dances, which went pretty well. Then he said he tried to dance fast but fell, and Shannon helped him up. He said it was no big deal, then he danced in his chair. Overall, he had a great night and we were really happy for him! There was this hesitation in his voice when he talked about it, he didn't say what that was and we let him just tell us what he wanted to tell us. He genuinely seemed to have a great night. WHEW!!!!!!!!!!!!!!!!!!
We all slept hard last night and are for some reason, exhausted today. For sure, the entire family had hope and anticipation for this event. For us, it was more than just a dance. It meant a lot more to Nick we think and it definitely meant a lot more to us. It was a first. We know Nick can deal with things that come up regarding his CP. I think because we've always just done these things as a kind of "team", that is just how we felt. It was Nick's night for sure. We didn't want to make it about us, it WAS about Nick. You can't separate us, though. We're a family and a team. Team Hyndman! What affects one of us, affects us all. That is how families work, how our family works. I wouldn't have it any other way. I can assure you that we'd do the same for any one of us. We can't even begin to think about Isabella going to dances though. Thank goodness we've got a few years before that!:)
Blessings:)
Amy
Thursday, October 8, 2009
Cerebral Palsy Family on Facebook
I started a Group on Facebook (www.facebook.com) as a link to this blog called Cerebral Palsy Family. Hopefully this will allow us to connect with more people!
Nick and my friend, Sandi, actually got me started on Facebook and it is really what you want it, what you make it to be. I love it for connecting with friends and causes and you can get on it as little or as often as you like, control your "friends" , so it doesn't have to be anything that you don't want it to be. I like that about it. It's actually a great way to network and I am a "newbie" at all of this so if I can do it, anyone can!
Join us!
Amy
Nick and my friend, Sandi, actually got me started on Facebook and it is really what you want it, what you make it to be. I love it for connecting with friends and causes and you can get on it as little or as often as you like, control your "friends" , so it doesn't have to be anything that you don't want it to be. I like that about it. It's actually a great way to network and I am a "newbie" at all of this so if I can do it, anyone can!
Join us!
Amy
"Keepin it REAL"
I had lunch with a friend earlier this week and I always appreciate my friends for helping to to "keep it real". We were talking about our kids. I was telling her some things about Nick and she reminded me that what I was feeling was true for ALL kids. In other words, this particular issue wasn't about Nick's disability , but was a universal "kid" issue.
I really do always appreciate this. It has happened several times over the years and it always causes me to pause and say, "oh yeah, it is!". I think our life and our family is defined by many things, but one of those many things is Nick's disability. I mean this in the best of ways. For good and bad, I wouldn't change Nick or our family and we are definitely stronger because of dealing with issues with Nick's disability and watching him move through life as a person with a disability who is excelling and living a full life. With all of the ups and downs, the "roller coaster ride" as Nick calls it, I (we) can become all-consumed by it at times, without even realizing it. Sometimes, it's good to be reminded that some of Nick's experiences or our feelings about it are things that many parents of kids experience and feel. Not to minimize the disability stuff, because it is a major part of our lives, but it's not all of it:) Just as Nick's disability is only one part of him. It may be a major part of his life and affect most areas of his life, but the truth is he's more ALIKE other kids his age than unlike them. We've always said that. This is true for all individuals with disabilities in my opinion. We need to look at the things we have in common a bit more.
So, THANK YOU to my friends who help me to remember these things! I need that in my life!
Blessings:)
Amy
I really do always appreciate this. It has happened several times over the years and it always causes me to pause and say, "oh yeah, it is!". I think our life and our family is defined by many things, but one of those many things is Nick's disability. I mean this in the best of ways. For good and bad, I wouldn't change Nick or our family and we are definitely stronger because of dealing with issues with Nick's disability and watching him move through life as a person with a disability who is excelling and living a full life. With all of the ups and downs, the "roller coaster ride" as Nick calls it, I (we) can become all-consumed by it at times, without even realizing it. Sometimes, it's good to be reminded that some of Nick's experiences or our feelings about it are things that many parents of kids experience and feel. Not to minimize the disability stuff, because it is a major part of our lives, but it's not all of it:) Just as Nick's disability is only one part of him. It may be a major part of his life and affect most areas of his life, but the truth is he's more ALIKE other kids his age than unlike them. We've always said that. This is true for all individuals with disabilities in my opinion. We need to look at the things we have in common a bit more.
So, THANK YOU to my friends who help me to remember these things! I need that in my life!
Blessings:)
Amy
Sunday, October 4, 2009
The Snowman-Wheelchair Ballet
http://www.toledoblade.com/apps/pbcs.dll/article?AID=2004411240335
This may seem sort of random, but I was going through some old e-mails and I came upon this link to an article that talks about a wheelchair ballet Nick was in when he was 11 years-old. Nick is in the article. He had a great time, it was a wonderful experience. The Jr. High sent all of his fellow classmates on a field trip to see the performance:)
Amy
This may seem sort of random, but I was going through some old e-mails and I came upon this link to an article that talks about a wheelchair ballet Nick was in when he was 11 years-old. Nick is in the article. He had a great time, it was a wonderful experience. The Jr. High sent all of his fellow classmates on a field trip to see the performance:)
Amy
Sunday, September 27, 2009
A rap written by Nick - "Prove Them All Wrong"
Prove Them All Wrong
By: Nick Hyndman
16 yrs. ago on an August mornMom and Dad had tears of joy, cause their baby boy was born1 week later after they were sent homeMommy calls daddy on the phoneSaying lil nick is getting sickDocs gave em the news, here’s what they said“He’ll never walkHe’ll never talk”In fact, they were spitting shit about how the best he’ll ever do is barely sitOh yeah, and he’ll have cognitive delaysBut now, 16 yrs. later, this is what I say“Up till this day that I stand here rapping this songI’ve been able to prove them all wrong.”One chance, one life, that’s really all I gotTo show everyone what I am and what I’m notI’m not gonna waste it trying to be like othersBecause if I did, my life would be in the gutterNah, see, what I’m gonna be is the best that I can beIf you got a problem with that, then that’s fine with meCause I know in my heart that from da very startI’ve never given up, and I’ve accomplished so muchI have one major dream that I’ll spend my whole life to achieveThat one dream is to prove them all wrong To get where I’m at 2day, I’ve had to through a lot of hellBut there are some people out there who just can never tellThere are people out there that think I got my life made easyJust because I have some people doing some lil things for meThese are the same people who don’t know about all the pain that I go throughOr all the challenges I take on, that some days are brand newWell, for all these people who think my life is easyFor those people who don’t truly know me24/7 till da break of dawnI’ma be busting my ass off proving ya’ll wrongOne chance, one life, that’s really all I gotTo show everyone what I am and what I’m notI’m not gonna waste it trying to be like othersBecause if I did, my life would be in the gutterNah, see, what I’m gonna be is the best that I can beIf you got a problem with that, then that’s fine with meCause I know in my heart that from da very startI’ve never given up, and I’ve accomplished so muchI have one major dream that I’ll spend my whole life to achieveThat one dream is to prove them all wrongHere we go againThis time, I ain’t even gonna rhymeI’ma just tell it like it isI’ma be having people telling me I ain’t gonna be able to do stuff my whole lifeTo some people being told what they can’t do might be like someone stabbing their heart with a knifeBut not me, haha, I love it when people tell me no, cuz I ain’t never gonna take no for an answerI’ma fight till I do it rightI know I ain’t gonna win every timeCause I ain’t nowhere near perfectI just saying I’ll never give upBecause to me, giving inIs like a sinI’ma say it one final timeFor all of those who thought just because of my appearancesI’d never amount to anythingI’d never walk, I’d never talkWell, all I can say now isLook at me nowSo, go aheadKeep on trying to take me downI’m just in the beginning of this everlasting process of proving ya’ll wrong.One chance, one life, that’s really all I gotTo show everyone what I am and what I’m notI’m not gonna waste it trying to be like othersBecause if I did, my life would be in the gutterNah, see, what I’m gonna be is the best that I can beIf you got a problem with that, then that’s fine with meCause I know in my heart that from da very startI’ve never given up, and I’ve accomplished so muchI have one major dream that I’ll spend my whole life to achieveThat one dream is to prove them all wrongOne chance, one life, that’s really all I gotTo show everyone what I am and what I’m notI’m not gonna waste it trying to be like othersBecause if I did, my life would be in the gutterNah, see, what I’m gonna be is the best that I can beIf you got a problem with that, then that’s fine with meCause I know in my heart that from da very startI’ve never given up, and I’ve accomplished so muchI have one major dream that I’ll spend my whole life to achieveThat one dream is to prove them all wrong
By: Nick Hyndman
16 yrs. ago on an August mornMom and Dad had tears of joy, cause their baby boy was born1 week later after they were sent homeMommy calls daddy on the phoneSaying lil nick is getting sickDocs gave em the news, here’s what they said“He’ll never walkHe’ll never talk”In fact, they were spitting shit about how the best he’ll ever do is barely sitOh yeah, and he’ll have cognitive delaysBut now, 16 yrs. later, this is what I say“Up till this day that I stand here rapping this songI’ve been able to prove them all wrong.”One chance, one life, that’s really all I gotTo show everyone what I am and what I’m notI’m not gonna waste it trying to be like othersBecause if I did, my life would be in the gutterNah, see, what I’m gonna be is the best that I can beIf you got a problem with that, then that’s fine with meCause I know in my heart that from da very startI’ve never given up, and I’ve accomplished so muchI have one major dream that I’ll spend my whole life to achieveThat one dream is to prove them all wrong To get where I’m at 2day, I’ve had to through a lot of hellBut there are some people out there who just can never tellThere are people out there that think I got my life made easyJust because I have some people doing some lil things for meThese are the same people who don’t know about all the pain that I go throughOr all the challenges I take on, that some days are brand newWell, for all these people who think my life is easyFor those people who don’t truly know me24/7 till da break of dawnI’ma be busting my ass off proving ya’ll wrongOne chance, one life, that’s really all I gotTo show everyone what I am and what I’m notI’m not gonna waste it trying to be like othersBecause if I did, my life would be in the gutterNah, see, what I’m gonna be is the best that I can beIf you got a problem with that, then that’s fine with meCause I know in my heart that from da very startI’ve never given up, and I’ve accomplished so muchI have one major dream that I’ll spend my whole life to achieveThat one dream is to prove them all wrongHere we go againThis time, I ain’t even gonna rhymeI’ma just tell it like it isI’ma be having people telling me I ain’t gonna be able to do stuff my whole lifeTo some people being told what they can’t do might be like someone stabbing their heart with a knifeBut not me, haha, I love it when people tell me no, cuz I ain’t never gonna take no for an answerI’ma fight till I do it rightI know I ain’t gonna win every timeCause I ain’t nowhere near perfectI just saying I’ll never give upBecause to me, giving inIs like a sinI’ma say it one final timeFor all of those who thought just because of my appearancesI’d never amount to anythingI’d never walk, I’d never talkWell, all I can say now isLook at me nowSo, go aheadKeep on trying to take me downI’m just in the beginning of this everlasting process of proving ya’ll wrong.One chance, one life, that’s really all I gotTo show everyone what I am and what I’m notI’m not gonna waste it trying to be like othersBecause if I did, my life would be in the gutterNah, see, what I’m gonna be is the best that I can beIf you got a problem with that, then that’s fine with meCause I know in my heart that from da very startI’ve never given up, and I’ve accomplished so muchI have one major dream that I’ll spend my whole life to achieveThat one dream is to prove them all wrongOne chance, one life, that’s really all I gotTo show everyone what I am and what I’m notI’m not gonna waste it trying to be like othersBecause if I did, my life would be in the gutterNah, see, what I’m gonna be is the best that I can beIf you got a problem with that, then that’s fine with meCause I know in my heart that from da very startI’ve never given up, and I’ve accomplished so muchI have one major dream that I’ll spend my whole life to achieveThat one dream is to prove them all wrong
Catching up....Happy 10th Birthday Isabella Grace!
It's been too long since my last post. For a lot of reasons, I haven't had the chance to write but things have calmed down and I hope to keep things more updated from now on!
Just to catch up since my last posting, Nick and Bella are settled back in school now. Nick is in his Jr. year of high school and Bella is in the 4th grade. Nick is having a great year so far and is really enjoying his humanities class. His homework has been more manageable so far this year. This has been an issue most years. As Nick has CP, his fine motor skills are affected and he has trouble writing and with involuntary movements. He can use a computer but his typing takes longer and most teachers have not adapted his work so he can do it on the computer even though we have this as an accommodation in his IEP. We've had more meetings than I can count to address this year after year. He really needs and relies on a scribe, which his his para at school and us (Greg or I) at home. By the time Nick gets home from school, he is physically exhausted just from trying to hold his head up all day and sit up straight, which takes a lot of effort. The doctor has said it takes him three times as much energy to do those things than most people. Then he would get home and it would take us three or more hours in years past to do homework, which was impossible some nights. So, having explained all of that, the good news is, this year seems to be better so far! Yeah! Nick has also asked a friend (from another school) to go to his homecoming dance with him and she said yes, so as of now, he is going to his homecoming in 2 weeks, which is a first:) Isabella is LOVING her teacher and the 4th grade. She is such a perfectionist (:, which makes us sad, and we've had to reassure her constantly that she just has to do her best (which has been GREAT) and not get upset if she struggles with something or isn't perfect at it. It's hard to see her struggle with this. I was very much like this at her age and I've made such an effort to make sure she would NOT be that way, but she is. Is this an innate quality? She is so sweet and works so hard and is doing really well so far in school. She is so social and comes home every day and tells us ALL about her day, where Nick is 16 and tells us very little (teenager!). Bella still loves to read and reads every day. She also started back to dance and is taking jazz, tap, and hip-hop this year.
Some big news since my last post...........September 20th, Isabella Grace turned 10 years old! Happy Birthday Isabella! She is double digits now. I can't believe it. We had a nice steak dinner for her birthday and of course, we had a party for Nick and Bella's birthday labor day weekend at Maumee Bay State Park. We rented a cabin and had a party and just had the greatest weekend as a family! We had family and friends on Saturday, went swimming, went for walks, had a cook-out, the kids played with their friends and cousins, it was so great!
While at Maumee Bay, Nick had a bike accident on his ParaOlympic bike on the boardwalk, and went head first on his bike off of the boardwalk, 4 1/2 feet down into the thick woods. It was scary and an awful feeling getting to him. Bella came back to get us as they were ahead of us on the boardwalk when he went off. We were on a 2 mile walk, about half way in when it happened. His bike (wheel) is mangled and needs to be replaced and he is ok. He had some scratches, bruises, and he hurt his shoulder, which was separated and he ended up in a sling for a short time. Overall, we were lucky. I'll talk more about this later as I've thought a lot about the topic of risk lately.
Last week, Isabella participated in a "majorette clinic". She got to go one evening for a couple of hours and practice with the majorettes (it is a benefit for the band), got a t-shirt, and Friday night, she and the other girls got to be on the field with the marching band and majorettes to perform a routine. She loved it and did great! She would really like to look into baton lessons in the near future. We all went to the football game as a family (including my parents, Greg's parents and our niece and nephew) to watch Bella and the game. It was so fun! Perrysburg won and it was a great night.
I'm helping with a class at Bowling Green State University on Mondays and I'm loving it. It's a course on collaborating with families for education/special education students. Greg is also back in school now (and of course working!) so things are very busy here. I was recently asked to be on an advisory board for the Ability Center of Greater Toledo and I start that in October. I'm REALLY looking forward to this opportunity to contribute and do what I can.
Greg's Dad also came to visit us overnight from Tennessee the week before Labor Day. We had a nice dinner and enjoyed the visit. Unfortunately, we don't get to see him often, so it was really nice. Nick got a new wheelchair, new hearing aide ear molds, and we are getting Charger, his service dog, ready for his first certification test in October. I think that is all of the latest news for us. We are really looking forward to Fall, one of our favorite seasons of the year!
Just to catch up since my last posting, Nick and Bella are settled back in school now. Nick is in his Jr. year of high school and Bella is in the 4th grade. Nick is having a great year so far and is really enjoying his humanities class. His homework has been more manageable so far this year. This has been an issue most years. As Nick has CP, his fine motor skills are affected and he has trouble writing and with involuntary movements. He can use a computer but his typing takes longer and most teachers have not adapted his work so he can do it on the computer even though we have this as an accommodation in his IEP. We've had more meetings than I can count to address this year after year. He really needs and relies on a scribe, which his his para at school and us (Greg or I) at home. By the time Nick gets home from school, he is physically exhausted just from trying to hold his head up all day and sit up straight, which takes a lot of effort. The doctor has said it takes him three times as much energy to do those things than most people. Then he would get home and it would take us three or more hours in years past to do homework, which was impossible some nights. So, having explained all of that, the good news is, this year seems to be better so far! Yeah! Nick has also asked a friend (from another school) to go to his homecoming dance with him and she said yes, so as of now, he is going to his homecoming in 2 weeks, which is a first:) Isabella is LOVING her teacher and the 4th grade. She is such a perfectionist (:, which makes us sad, and we've had to reassure her constantly that she just has to do her best (which has been GREAT) and not get upset if she struggles with something or isn't perfect at it. It's hard to see her struggle with this. I was very much like this at her age and I've made such an effort to make sure she would NOT be that way, but she is. Is this an innate quality? She is so sweet and works so hard and is doing really well so far in school. She is so social and comes home every day and tells us ALL about her day, where Nick is 16 and tells us very little (teenager!). Bella still loves to read and reads every day. She also started back to dance and is taking jazz, tap, and hip-hop this year.
Some big news since my last post...........September 20th, Isabella Grace turned 10 years old! Happy Birthday Isabella! She is double digits now. I can't believe it. We had a nice steak dinner for her birthday and of course, we had a party for Nick and Bella's birthday labor day weekend at Maumee Bay State Park. We rented a cabin and had a party and just had the greatest weekend as a family! We had family and friends on Saturday, went swimming, went for walks, had a cook-out, the kids played with their friends and cousins, it was so great!
While at Maumee Bay, Nick had a bike accident on his ParaOlympic bike on the boardwalk, and went head first on his bike off of the boardwalk, 4 1/2 feet down into the thick woods. It was scary and an awful feeling getting to him. Bella came back to get us as they were ahead of us on the boardwalk when he went off. We were on a 2 mile walk, about half way in when it happened. His bike (wheel) is mangled and needs to be replaced and he is ok. He had some scratches, bruises, and he hurt his shoulder, which was separated and he ended up in a sling for a short time. Overall, we were lucky. I'll talk more about this later as I've thought a lot about the topic of risk lately.
Last week, Isabella participated in a "majorette clinic". She got to go one evening for a couple of hours and practice with the majorettes (it is a benefit for the band), got a t-shirt, and Friday night, she and the other girls got to be on the field with the marching band and majorettes to perform a routine. She loved it and did great! She would really like to look into baton lessons in the near future. We all went to the football game as a family (including my parents, Greg's parents and our niece and nephew) to watch Bella and the game. It was so fun! Perrysburg won and it was a great night.
I'm helping with a class at Bowling Green State University on Mondays and I'm loving it. It's a course on collaborating with families for education/special education students. Greg is also back in school now (and of course working!) so things are very busy here. I was recently asked to be on an advisory board for the Ability Center of Greater Toledo and I start that in October. I'm REALLY looking forward to this opportunity to contribute and do what I can.
Greg's Dad also came to visit us overnight from Tennessee the week before Labor Day. We had a nice dinner and enjoyed the visit. Unfortunately, we don't get to see him often, so it was really nice. Nick got a new wheelchair, new hearing aide ear molds, and we are getting Charger, his service dog, ready for his first certification test in October. I think that is all of the latest news for us. We are really looking forward to Fall, one of our favorite seasons of the year!
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