Hi all,
I received the following e-mail from a student/reader who lives in Australia. She gave me permission to share this but not her name, so I took her name out. Here is the e-mail:
Hi Amy (and family),
My name's _____. I'm a senior in high school in Australia. At the moment, I'm working on a major project for my English class. I am writing a mini-novella based on the true story of Tate and Nash Kemp -- and I believe you are aware of them as I noticed you posted the video on your blog. I was wondering if it would be possible to ask you a few questions about how your own family copes with the struggles of having a member with cerebral palsy, and possibly receiving some insight into the emotional and social aspects of the illness, rather than just the facts that a quick Google search can provide. It is the smaller details that will help shape my understanding. I'm hoping to discover some of the idiosyncrasies of the illness that outsiders would not be aware of. Please understand you have every right to decline my request, especially if it sounds too intrusive. Though I am aiming to be as respectful of your privacy as possible.
Thank you very much for your time,
(student)
Here's the second e-mail I received from her:
Hello,
Thank you so much for agreeing! It means a lot. Yes, Australia's really amazing, bias aside.
I totally understand. My brother's currently in California visiting his girlfriend, and they've been busy with Thanksgiving and crazy shopping!
Of course you may post this online, and, yes, if it's okay, I'd prefer my name to be kept out.
I have some, I suppose, prompt questions for you to lead you in the right direction. Use them as strictly or loosely as you like! If you would prefer not to answer one, that's no problem at all. I am appreciative enough that you have agreed to help me.
- What kind of things are necessary for your family to do every day to keep Nick's illness managed? Or, how do you help him to manage on a daily basis?
- How does Isabella cope with her brother's disability? (I'm aware this is a big and broad question so I will allow you to take it where you want it to go)
- Are there regular doctors' appointments you would have to make to monitor the illness and in particular, his deteriorating hearing, as you mentioned on the blog? What do they involve?
- Has Nick received a lot of trouble from his peers for his disability?
- I know you mentioned the impact from your own friends and other families within the community, which just shocked and outraged me. Anything more you have to say on this, as specific/broad as you would like, would be appreciated.
- And basically YOUR opinions/views/feelings about anything related to how your family is coping with this. I am just so interested in picking your brain, if you can't already tell, so you can share whatever you feel like as I am a keen listener.
I commend your participation in the online community and the courage you have to share yourself and your life openly. It is no doubt a help to myself in this situation and many others in ones similar to yours. Thank you so, so much!
(student)
Here's the responses I sent her:
Hi _____,
I'm sorry it has taken me a few days to get back to you. I hope I am not holding you up in any way!
I'm just going to copy and paste your questions and then answer them:
- What kind of things are necessary for your family to do every day to keep Nick's illness managed? Or, how do you help him to manage on a daily basis?
With Nick's CP, we use physical therapy (PT), occupational therapy (OT), and speech therapy, as well as PT in the water. Now, he only really receives PT right now and he only now goes as needed, when he's having a problem. We have to use a variety of exercises at home DAILY, including stretching to help his muscles from contracting and to manage his pain. At home, in addition to daily stretching and exercises (about 30 minutes as he is wrestling at high school right now and works out a lot for that), we got a portable whirlpool tub we can put in our bathtub (we cannot afford a jacuzzi tub or pool right now!) and he soaks 30-40 min. at night in a hot whirlpool bath with Epsom salts to help relax his muscles and help with pain, he takes medications daily for GI Reflux, allergies, and nerve damage/pain, we put bars he can hold while standing up in our garage, hallways, bathroom, and Nick's bedroom, have special rails installed on our toilet and bathtub, a special shower-head he can pull down and use in the tub, a shower chair to take showers with, ramps at all three entrances in the house, a special phone with large buttons and for hearing impaired individuals. We also use straw cups for him to drink from with handles. Nick has a service dog who can retrieve items he drops, the telephone, get him a snack, etc., and more. Nick wears hearing aids during the day and uses an FM system to stream sound from his IPOD, speakers at school, etc. We have a special smoke detector with a strobe light and a bed vibrator for hearing impaired individuals, as well as a special device that makes his bedroom light turn on and off when the doorbell rings or phone rings. He has an alarm clock that is very loud and vibrates his bed. He has bed rails (on a regular bed). He uses a wheelchair and walker to get around outside the house, as well as a Segway and he wears AFO leg/foot orthotics during the day when he's not at home to help him walk. I think that's it. Hope I'm not leaving anything out!
- How does Isabella cope with her brother's disability? (I'm aware this is a big and broad question so I will allow you to take it where you want it to go)
We just have ALWAYS, from the time she was a baby, talked about Nick's disability, read her children's books about disabilities and with pictures of people in wheelchairs, etc., answered her questions honestly at the level she was at when she asks them, she's around other kids with disabilities and adults all of the time at Nick's activities and with our friends, so it's kind of like we have "as a matter of fact" attitude about it all. We let her tell us how she feels, whatever it is, cry, whatever. We include her in all things we do with Nick, literally, if she wants to be or sometimes we just do it as a family. (ie: we all four went to Canada for 6 weeks in 2002 for conductive education therapy) Currently, Bella is 11 and she attends sibshops (workshops for sibs her age) monthly (website on my blog), and she has books for kids her age and adults on having a sibling with a disability. Isabella has never seemed to have been jealous because we include her in everything and spend one on one time with her too. She and Nick are VERY close, hang out all of the time, she's very protective and sensitive when others tease Nick or stare at him (it makes her angry/sad and we talk about that!). At her teacher conference at school last month, her teacher said she is one of the "most compassionate" students he's ever had in 5th grade and she helps kids in her class with autism without being asked to do so and is very "inclusive". I believe that has everything to do with being Nick's sibling. Whatever she feels at any time, we'll just talk to her about it and work it out! We don't want her to believe "disability" is a BAD thing, and she doesn't.
- Are there regular doctors' appointments you would have to make to monitor the illness and in particular, his deteriorating hearing, as you mentioned on the blog? What do they involve?
YES, we have alot of regular doctor appts., every three to six months with is orthopedic doctor and GI doctor, the neurologist once a year, his family doctor yearly and whenever he's sick, his audiologist and ENT every 6 months to a year, yearly hearing tests and adjustments to his hearing aids as needed, he needs new ear molds and adjustments to his leg braces yearly, and now we do PT as needed but we used to do it anywhere from three times a week to once a month, more when he was younger, less as he's gotten older.
- Has Nick received a lot of trouble from his peers for his disability?
Yes, he has had trouble many times, more than I could write about. More staring and teasing in elementary school and Jr. High, early high school, less teasing in the last few years in high school (maturity of the kids increasing and we had a school-wide disability awareness training). Terrible comments over the years. Nick's had a variety of strategies in dealing with it, depending on his age, but overall I can say, he amazes and impresses me so much at how he handles it most of the time. We've cried together over things too. We've done a lot as parents and as a family to address this issue too over the years.
- I know you mentioned the impact from your own friends and other families within the community, which just shocked and outraged me. Anything more you have to say on this, as specific/broad as you would like, would be appreciated.
Well, I know I said a lot in the blog. Overall, I think people are just ignorant and if they haven't experienced having a child or family member with a disability, they don't understand what it's like, the little and big things you deal with on a daily basis. It's an ongoing thing we've dealt with but we've weeded out a lot of good people and friends we've met along the way.
- And basically YOUR opinions/views/feelings about anything related to how your family is coping with this. I am just so interested in picking your brain, if you can't already tell, so you can share whatever you feel like as I am a keen listener.
I think, overall, we've dealt with Nick's disability the best we can. Sometimes better than others. We've felt the whole range from shock, anger, denial, acceptance, sadness, encouragement, on and on......! I think we've become very educated. The best way I can describe it is bittersweet and like a roller-coaster, a lot of ups and downs. Honestly, most of the time, it's exhausting if I think back to the beginning until now and there were times it was very dark and we didn't have or get a lot of hope when he was very young. We were depressed I'm sure. We had to decide, a firm decision, when he was about three I'm guessing, that we were going to focus on the things Nick CAN do as much as possible, instead of what he can 't do all of the time. Professionals always remind us what he CAN'T do, believe me, so it's still hard to hear those things or when we see other kids his age, but we keep reminding ourselves of how much he is doing and can do that we were told he'd never do. I'd say, our lives changed forever the day we found out Nick had a disability, in some bad ways at times, but mostly good ways, and we can't imagine our life without Nick or Bella in it. Our life revolves around both of them, and a lot of it around Nick's disability but as I said, we try to do it as a family so we're together as much as possible. I think that is what a family is all about. We'd do the same if any of us needed it. That's why I say we're a team, Team Hyndman, because we are always on each others side and biggest fans. So, no matter what happens, we'll be OK in the end because we have each other. Nick is as much of a contributor in our family as any of us, he listens to Bella and us, tries to help us, is encouraging, is funny and fun to be with, tells great stories and has a great sense of humor. He helps Bella with her homework and helps her study, shows her how to do things on the computer when she needs help, they play video games a lot together. He helps her download songs on her IPOD, etc. OK-I've written too much! Sorry!
If you have any other questions, just let me know. Hope this isn't too late and I hope it helps.
Take care,
Amy
If anyone has anything they'd like to share with this student, let me know and I'll pass it on to her.
Blessings:)
Amy
Tuesday, December 7, 2010
December 7, 1993 - Diagnosis Day
Hi all,
17 years ago today, December 7, 1993, our son, Nick, was officially diagnosed with cerebral palsy when he was not quite four months old. I know I wrote about this day in detail in a previous post.
I remember the day, the overcast, cold, weather, what we were wearing, my face getting hot and tears coming without control. I remember looking at Nick, my baby, thinking how much I loved him and telling him I was going to take good care of him and give him the best life. I remember my throat and chest getting so tight I couldn't talk, ALL of it. It was a defining day in our life and we had no idea what the future would hold. Thinking back, one of the hardest, most frightening things was the unknown. I still feel that way when I think of Nick going off to college and out on his own one day. I know now, though, that whatever happens, things ultimately work out and will be OK.
Blessings:)
Amy
17 years ago today, December 7, 1993, our son, Nick, was officially diagnosed with cerebral palsy when he was not quite four months old. I know I wrote about this day in detail in a previous post.
I remember the day, the overcast, cold, weather, what we were wearing, my face getting hot and tears coming without control. I remember looking at Nick, my baby, thinking how much I loved him and telling him I was going to take good care of him and give him the best life. I remember my throat and chest getting so tight I couldn't talk, ALL of it. It was a defining day in our life and we had no idea what the future would hold. Thinking back, one of the hardest, most frightening things was the unknown. I still feel that way when I think of Nick going off to college and out on his own one day. I know now, though, that whatever happens, things ultimately work out and will be OK.
Blessings:)
Amy
Monday, November 29, 2010
Event Announcement: "Feeling Welcome: The Importance of Belonging"
Hi all,
I received this e-mail/event announcement from Dan Wilkins, PR at The Ability Center of Greater Toledo. Derrick Dufresne is an excellent speaker. I've had the pleasure of hearing him speak and hope to attend this event as well. Please pass on to others who may be interested. Thanks!
Here it is:
Attached please find a flyer announcing a presentation on December 17 by Derrick Dufresne. If you attended the January 28th gathering we hosted at the Secor Rd. Ramada Inn, you may have already heard Derrick’s message related to the impact of loneliness in our communities. However, we hope you will be able to join us on December 17 as we continue to expand our effort to promote inclusive communities.
Please forward this announcement to colleagues and encourage them to attend also.
Thank you for being a Partner for Community Inclusion.
Sincerely,
Dan Wilkins
Director of Public Relations and Community Partnerships
The Ability Center of Greater Toledo
5605 Monroe Street
Sylvania, OH 43560
419-885-5733
866-885-5733 (toll-free)
419-290-6377 (cell)
In January, 2010, at our first meeting with area partners, we were reminded that “Loneliness Kills”; that a person living in isolation, without social connections and the benefits that come from community and belonging, lives a shorter, less healthy life. We learned the average individual in society can count around 150 people as friends and
acquaintances, while a person with a significant disability can count only about 15. Of thesemost are paid to be with them. On December 17th, we will be having another conversation with Derrick Dufresne. He will revisit the issues of Loneliness and Social Capital and the impact they have on all members of the community, including those living with disability. He will also share a few local success stories born out of that initial gathering. If you would like to have a refresher on these topics or have fellow employees or friends who you feel would benefit from this information,
please join us.
** There is no charge for this event.
Feeling Welcome: The Importance of Belonging
A Conversation with Derrick Dufresne
Where: Ward Pavilion, Wildwood Metropark,
4830 W. Central Avenue, Toledo, 43615
Use the east entrance off Central just West of Corey.
When: December 17, 9 to 11am
Who should attend: Anyone with an interest in developing inclusive communities.
Please RSVP: Lisa Justice: 419.885.5733, ext 237, or ljustice@abilitycenter.org
no later than Dec 10
** There is no charge for this event. Coffee, bagels, and juice will be available.
Please share this announcement with others who are interested in creating inclusive communities.
Event Sponsored and Supported by:
For Derrick’s Bio and Vision:
http://www.craconferences.com/
Blessings:)
Amy
I received this e-mail/event announcement from Dan Wilkins, PR at The Ability Center of Greater Toledo. Derrick Dufresne is an excellent speaker. I've had the pleasure of hearing him speak and hope to attend this event as well. Please pass on to others who may be interested. Thanks!
Here it is:
Attached please find a flyer announcing a presentation on December 17 by Derrick Dufresne. If you attended the January 28th gathering we hosted at the Secor Rd. Ramada Inn, you may have already heard Derrick’s message related to the impact of loneliness in our communities. However, we hope you will be able to join us on December 17 as we continue to expand our effort to promote inclusive communities.
Please forward this announcement to colleagues and encourage them to attend also.
Thank you for being a Partner for Community Inclusion.
Sincerely,
Dan Wilkins
Director of Public Relations and Community Partnerships
The Ability Center of Greater Toledo
5605 Monroe Street
Sylvania, OH 43560
419-885-5733
866-885-5733 (toll-free)
419-290-6377 (cell)
In January, 2010, at our first meeting with area partners, we were reminded that “Loneliness Kills”; that a person living in isolation, without social connections and the benefits that come from community and belonging, lives a shorter, less healthy life. We learned the average individual in society can count around 150 people as friends and
acquaintances, while a person with a significant disability can count only about 15. Of thesemost are paid to be with them. On December 17th, we will be having another conversation with Derrick Dufresne. He will revisit the issues of Loneliness and Social Capital and the impact they have on all members of the community, including those living with disability. He will also share a few local success stories born out of that initial gathering. If you would like to have a refresher on these topics or have fellow employees or friends who you feel would benefit from this information,
please join us.
** There is no charge for this event.
Feeling Welcome: The Importance of Belonging
A Conversation with Derrick Dufresne
Where: Ward Pavilion, Wildwood Metropark,
4830 W. Central Avenue, Toledo, 43615
Use the east entrance off Central just West of Corey.
When: December 17, 9 to 11am
Who should attend: Anyone with an interest in developing inclusive communities.
Please RSVP: Lisa Justice: 419.885.5733, ext 237, or ljustice@abilitycenter.org
no later than Dec 10
** There is no charge for this event. Coffee, bagels, and juice will be available.
Please share this announcement with others who are interested in creating inclusive communities.
Event Sponsored and Supported by:
For Derrick’s Bio and Vision:
http://www.craconferences.com/
Blessings:)
Amy
Wednesday, November 24, 2010
Wood Lane - Wood County Board of Developmental Disabilities: A local family's willingness to share their "Exper...
Wood Lane - Wood County Board of Developmental Disabilities: A local family's willingness to share their "Exper...: "One of the blogs we follow is Cerebralpalsyfamily.blogspot.com. The Hyndman family posts information, resources/links, and personal reflect..."
Tuesday, November 23, 2010
Happy Thanksgiving from Team Hyndman
Hi all,
For our friends and family who have been asking about Nick's wrestling, he found out last night he is wrestling JV at least for now. I put both schedules up in a previous post. If anything changes at any time, I'll let you know.
Nick is actually a little disappointed but I think it's just amazing he's wrestling at all with cerebral palsy! It's just his competitive side and high expectations for himself, but I told him to just work hard and ENJOY it as this is his senior year! We wish he wouldn't be so hard on himself but it is that kind of determination that has gotten him as far as he has, so we hope we can just teach him to balance that out a little.
Thanksgiving is a few days a way but we are going to be very busy with appts. for the kids today and tomorrow. Nick is taking his driving test today with his special driving instructor, Isabella has an orthodontist appt., dance tonight, Nick has wrestling today and tomorrow, and of course, I have to grocery shop and cook tomorrow! Sound familiar to anyone? I bet it does!
So, we would like to wish everyone a VERY Happy Thanksgiving! We hope you are safe, healthy, grateful for your blessings, and enjoy time with people you love!
We are grateful for so many things, it would take too many pages to write it all down. We are grateful for God's gifts in our life, each other, our family, friends, and loved ones, our health, our time together, on and on and on.....We are also grateful for our readers of our blog and to be able to share our experiences with others. Thank you!
We'll be back after the holiday with more updates and information!
Happy Thanksgiving and Blessings:)
Team Hyndman
Greg, Amy, Nick, and Isabella
Charger, Oreo, Ozzie, and Shelly
For our friends and family who have been asking about Nick's wrestling, he found out last night he is wrestling JV at least for now. I put both schedules up in a previous post. If anything changes at any time, I'll let you know.
Nick is actually a little disappointed but I think it's just amazing he's wrestling at all with cerebral palsy! It's just his competitive side and high expectations for himself, but I told him to just work hard and ENJOY it as this is his senior year! We wish he wouldn't be so hard on himself but it is that kind of determination that has gotten him as far as he has, so we hope we can just teach him to balance that out a little.
Thanksgiving is a few days a way but we are going to be very busy with appts. for the kids today and tomorrow. Nick is taking his driving test today with his special driving instructor, Isabella has an orthodontist appt., dance tonight, Nick has wrestling today and tomorrow, and of course, I have to grocery shop and cook tomorrow! Sound familiar to anyone? I bet it does!
So, we would like to wish everyone a VERY Happy Thanksgiving! We hope you are safe, healthy, grateful for your blessings, and enjoy time with people you love!
We are grateful for so many things, it would take too many pages to write it all down. We are grateful for God's gifts in our life, each other, our family, friends, and loved ones, our health, our time together, on and on and on.....We are also grateful for our readers of our blog and to be able to share our experiences with others. Thank you!
We'll be back after the holiday with more updates and information!
Happy Thanksgiving and Blessings:)
Team Hyndman
Greg, Amy, Nick, and Isabella
Charger, Oreo, Ozzie, and Shelly
Sunday, November 21, 2010
What Would You Do?
Hi all,
I feel it in the air, Thanksgiving this week! I'm getting the store list ready and planning what I'm cooking and looking forward to the family getting together. Even my brother, Jimmie and Mike and their dog, Lily is coming into town.
Does anyone ever watch the show on ABC, "What Would You Do?" The kids, Greg, and I LOVE this show! I've always felt people are "one" and need to be involved when there is an injustice or something bad happening, so I love this show.
I ask the question to myself, in my head, a lot. One thing that I think about is:
A question I have for people:what would you do if you had a child with an imperfection in their appearance? Would you try to erase it or change it? I ask because I know people who have done this and I wonder what they think when they look at my physically disabled child. I wonder if they're grateful it is not their child or what they would do if their child didn't look perfect or had an imperfection? I know some people who are SO into appearances and I just have no place in my life for that anymore. When you have a child with a disability, that all seems so shallow and I think, "gee, then what do you think of my child?" (of anyone else who isn't "perfect"?) I know someone who's child had a birthmark and they had it removed. It was a big deal to them. I thought, really? I realize these kinds of decisions are personal and in some ways are none of my business. BUT, because it was a friend and they shared this with me, I knew about it, and was actually very hurt inside, even trough I knew it wasn't about ME, it was about them, but I felt it for Nick in some weird way. Maybe I'm too sensitive. Well, I AM really sensitive. I used to see this as a problem but I don't anymore. I think the world can use a little more heart and sensitivity.
I guess it extends to all kinds of things...what would you do if your teenager couldn't walk or bathe themselves or something else? We ALL take things for granted, unintentionally. If we don't experience it, then how can we know what it's like? That's one of the many reasons I write this blog, to educate and make people aware. I've been doing this for 17 years now, am passionate about it and feel it's one of my purposes in life, and plan to continue to do it even when my friends and family may get sick of me!:) (haha!!!!)
These kinds of things lead me (us) to gratitude very easily. We're so thankful for EVERYTHING Nick CAN do, his accomplishments, we take in every little and big victory with complete gratitude and joy! So, although these things come to mind on occasion (the question I posed above, what would you do........), I always, ultimately, end up in a place of gratitude and realize I have no place in my life for placing such importance on "appearances", physical or otherwise, and just feel I'm in a better place because of having Nick (and Bella of course!) and the journey he and we have been on and will continue.
If you've never had a chance to watch the show I mentioned above, you should! For us, it's on Friday nights on ABC. I'm sure if you go to their website, you can get listings for your area. And, I'd say, "get involved!"
Blessings:)
Amy
I feel it in the air, Thanksgiving this week! I'm getting the store list ready and planning what I'm cooking and looking forward to the family getting together. Even my brother, Jimmie and Mike and their dog, Lily is coming into town.
Does anyone ever watch the show on ABC, "What Would You Do?" The kids, Greg, and I LOVE this show! I've always felt people are "one" and need to be involved when there is an injustice or something bad happening, so I love this show.
I ask the question to myself, in my head, a lot. One thing that I think about is:
A question I have for people:what would you do if you had a child with an imperfection in their appearance? Would you try to erase it or change it? I ask because I know people who have done this and I wonder what they think when they look at my physically disabled child. I wonder if they're grateful it is not their child or what they would do if their child didn't look perfect or had an imperfection? I know some people who are SO into appearances and I just have no place in my life for that anymore. When you have a child with a disability, that all seems so shallow and I think, "gee, then what do you think of my child?" (of anyone else who isn't "perfect"?) I know someone who's child had a birthmark and they had it removed. It was a big deal to them. I thought, really? I realize these kinds of decisions are personal and in some ways are none of my business. BUT, because it was a friend and they shared this with me, I knew about it, and was actually very hurt inside, even trough I knew it wasn't about ME, it was about them, but I felt it for Nick in some weird way. Maybe I'm too sensitive. Well, I AM really sensitive. I used to see this as a problem but I don't anymore. I think the world can use a little more heart and sensitivity.
I guess it extends to all kinds of things...what would you do if your teenager couldn't walk or bathe themselves or something else? We ALL take things for granted, unintentionally. If we don't experience it, then how can we know what it's like? That's one of the many reasons I write this blog, to educate and make people aware. I've been doing this for 17 years now, am passionate about it and feel it's one of my purposes in life, and plan to continue to do it even when my friends and family may get sick of me!:) (haha!!!!)
These kinds of things lead me (us) to gratitude very easily. We're so thankful for EVERYTHING Nick CAN do, his accomplishments, we take in every little and big victory with complete gratitude and joy! So, although these things come to mind on occasion (the question I posed above, what would you do........), I always, ultimately, end up in a place of gratitude and realize I have no place in my life for placing such importance on "appearances", physical or otherwise, and just feel I'm in a better place because of having Nick (and Bella of course!) and the journey he and we have been on and will continue.
If you've never had a chance to watch the show I mentioned above, you should! For us, it's on Friday nights on ABC. I'm sure if you go to their website, you can get listings for your area. And, I'd say, "get involved!"
Blessings:)
Amy
Friday, November 19, 2010
What Are You Thankful For?
Hi all,
What are you thankful for? We'd love it if you'd share it with us!
We'll be talking about what we're thankful for later this week!
Blessings:)
Amy
What are you thankful for? We'd love it if you'd share it with us!
We'll be talking about what we're thankful for later this week!
Blessings:)
Amy
Does Our Grief Make You Uncomfortable?
Hi all,
Before I get to what I wanted to blog about today, I wanted to say "Happy Birthday" to my Dad, Jim Jagel. His birthday was yesterday! He is a one-0f-a-kind man, who is always there to help people even when he isn't feeling well, he makes time for others. That is the mark of a truly GOOD human being! He's been my Dad for 35 years, and he was always here for us, doing the little, every day things. He is Nick's home health care aid and always helps us with things, even when we don't ask. He and my Mom have been there for us with Nick from the beginning, letting us live with them for the first year and a half of Nick's life, traveling to Canada when we were lonely during Nick's therapy one summer and were in need of family support, and they are a part of every single thing in Nick and Bella's life. Very selfless people. Well, I could go on and on, but I'll just end with, I am (we are) so thankful for my Dad (and Mom too)!
After my blog post on October 30th, October 2010 Update, where I talked about our feelings lately re: Nick's disability and how these hit us out of the blue after all this time, I received some wonderful, supportive e-mails. Thank you!
I started this blog for several reasons. One reason was to write about our family, our experiences, and hopefully find some people out there who can relate and also maybe we could help someone else to feel they are not alone if they are experiencing similar feelings and things. So, of course, part of that is my writing about our feelings, good and bad, which is not something I am good at talking about with others, "venting" when needed, basically, whatever I feel I want to write about and share.
I find it interesting that some family and friends stop coming around when you share or show this kind of feeling, emotion, venting, instead of being supportive. It happened to us when Nick was little. We had several friends that just stopped coming around and as I've blogged about, we've made some great new friends in our journey. I was also told that I made some family members uncomfortable (exact words) because of the emotions I showed or things I said, in my grief. That was a big lesson for me and I learned back then to put on a smile and just say, "everything is great" to certain people because most people either don't want to hear the truth or don't care, but it clearly makes people uncomfortable. So, we have always been and are careful about who we share ourselves with. When you make yourself vulnerable to others, they can use it to hurt you, and they often do. There are a rare few we've learned we can talk to honestly about how we're feeling, etc. And, luckily for Greg and I, we talk to each other!:) SO, it was difficult for me to decide to "vent" and share my anger, envy, grief, sadness, all of those feelings that are a normal part of the grief process for someone with a child with a disability or health care issue. I have become ashamed to share these things over the years because I have learned, it MAKES PEOPLE UNCOMFORTABLE. But, I decided to do it because I just know we are not the only ones who have these feelings and I thought if we could help one other person/family, it would be worth it. It's not like we feel this way 24/7, and the truth is, we are too busy living life to even feel anything about Nick's disability hardly ever! We also DO try to be optimistic, we ARE in fact, and are positive most of the time. So, it's interesting to me that people have the reactions they do when you occasionally share or are going through a tough time. Some people stop calling or contacting you. Some tell you that you shouldn't be putting your own situation on everyone else. I could go on and on about the reactions we've gotten in the past and from this post in October. I've said before, our feelings are NOT about anyone we know, they are about US. But, we do have a right to our feelings and they are normal. I'm sorry if our grief makes people uncomfortable, but at the same time, why should I be sorry? Maybe people need to be aware of and more sensitive to others experiences and feelings, and be ok with it.
We've also found that finding a place to share with other parents and families is helpful, whether that be in person, online. We like Exceptional Family TV on Facebook and their actual website as one resource.
I got a post from a Dad who said he could relate to what I posted about on October 30th and gave me some good advice. He said to acknowledge it, feel it, go through it, and move on. That is what we do and it is good advice. It was nice knowing we reached this person who lives across the US and has the same experiences. That was one of our goals.
I will continue to blog about our family, experiences, feelings, good AND bad, in an honest and truthful way. I'm doing this for us and hopefully for others too. No regrets at all. I just think people should ask themselves WHY someone else's grief, feelings, tragedies, make them uncomfortable.
Blessings:)
Amy
Before I get to what I wanted to blog about today, I wanted to say "Happy Birthday" to my Dad, Jim Jagel. His birthday was yesterday! He is a one-0f-a-kind man, who is always there to help people even when he isn't feeling well, he makes time for others. That is the mark of a truly GOOD human being! He's been my Dad for 35 years, and he was always here for us, doing the little, every day things. He is Nick's home health care aid and always helps us with things, even when we don't ask. He and my Mom have been there for us with Nick from the beginning, letting us live with them for the first year and a half of Nick's life, traveling to Canada when we were lonely during Nick's therapy one summer and were in need of family support, and they are a part of every single thing in Nick and Bella's life. Very selfless people. Well, I could go on and on, but I'll just end with, I am (we are) so thankful for my Dad (and Mom too)!
After my blog post on October 30th, October 2010 Update, where I talked about our feelings lately re: Nick's disability and how these hit us out of the blue after all this time, I received some wonderful, supportive e-mails. Thank you!
I started this blog for several reasons. One reason was to write about our family, our experiences, and hopefully find some people out there who can relate and also maybe we could help someone else to feel they are not alone if they are experiencing similar feelings and things. So, of course, part of that is my writing about our feelings, good and bad, which is not something I am good at talking about with others, "venting" when needed, basically, whatever I feel I want to write about and share.
I find it interesting that some family and friends stop coming around when you share or show this kind of feeling, emotion, venting, instead of being supportive. It happened to us when Nick was little. We had several friends that just stopped coming around and as I've blogged about, we've made some great new friends in our journey. I was also told that I made some family members uncomfortable (exact words) because of the emotions I showed or things I said, in my grief. That was a big lesson for me and I learned back then to put on a smile and just say, "everything is great" to certain people because most people either don't want to hear the truth or don't care, but it clearly makes people uncomfortable. So, we have always been and are careful about who we share ourselves with. When you make yourself vulnerable to others, they can use it to hurt you, and they often do. There are a rare few we've learned we can talk to honestly about how we're feeling, etc. And, luckily for Greg and I, we talk to each other!:) SO, it was difficult for me to decide to "vent" and share my anger, envy, grief, sadness, all of those feelings that are a normal part of the grief process for someone with a child with a disability or health care issue. I have become ashamed to share these things over the years because I have learned, it MAKES PEOPLE UNCOMFORTABLE. But, I decided to do it because I just know we are not the only ones who have these feelings and I thought if we could help one other person/family, it would be worth it. It's not like we feel this way 24/7, and the truth is, we are too busy living life to even feel anything about Nick's disability hardly ever! We also DO try to be optimistic, we ARE in fact, and are positive most of the time. So, it's interesting to me that people have the reactions they do when you occasionally share or are going through a tough time. Some people stop calling or contacting you. Some tell you that you shouldn't be putting your own situation on everyone else. I could go on and on about the reactions we've gotten in the past and from this post in October. I've said before, our feelings are NOT about anyone we know, they are about US. But, we do have a right to our feelings and they are normal. I'm sorry if our grief makes people uncomfortable, but at the same time, why should I be sorry? Maybe people need to be aware of and more sensitive to others experiences and feelings, and be ok with it.
We've also found that finding a place to share with other parents and families is helpful, whether that be in person, online. We like Exceptional Family TV on Facebook and their actual website as one resource.
I got a post from a Dad who said he could relate to what I posted about on October 30th and gave me some good advice. He said to acknowledge it, feel it, go through it, and move on. That is what we do and it is good advice. It was nice knowing we reached this person who lives across the US and has the same experiences. That was one of our goals.
I will continue to blog about our family, experiences, feelings, good AND bad, in an honest and truthful way. I'm doing this for us and hopefully for others too. No regrets at all. I just think people should ask themselves WHY someone else's grief, feelings, tragedies, make them uncomfortable.
Blessings:)
Amy
Monday, November 15, 2010
New Addition to Team Hyndman
Hi all,
We have a new addition to Team Hyndman. Isabella got a turtle she has named Shelly. Greg (Daddy) can't say no to Bella, so I just decided to "go with the flow". Bella's super responsible too. She is a cute little thing! I'm sure we'll get a few pics soon.
Blessings:)
Amy
We have a new addition to Team Hyndman. Isabella got a turtle she has named Shelly. Greg (Daddy) can't say no to Bella, so I just decided to "go with the flow". Bella's super responsible too. She is a cute little thing! I'm sure we'll get a few pics soon.
Blessings:)
Amy
Friday, November 12, 2010
Brothers in Arms-Tate and Nash Kemp
Hi all,
You MUST watch this video, Brothers in Arms on Tate Kemp and his brother, Nash, from Melbourne Australia. Tate is 8 and has cerebral palsy. He reminds me exactly of Nick, his personality and determination, so many things. I just got done blogging about opportunities in my last post, logged onto Facebook, and a friend shared this story on Cerebral Palsy Family on Facebook. I laughed and cried and was inspired, and could relate!
Please take the time to watch and pass this on. There are also some Youtube Videos on Tate Kemp I saw on Exceptional Family TV on Facebook. If you go to Youtube and type his name in the search box, I would imagine they'll come up.
Here's the video and link below:
http://au.tv.yahoo.com/sunday-night/video/-/watch/22880747
Blessings:)
Amy
You MUST watch this video, Brothers in Arms on Tate Kemp and his brother, Nash, from Melbourne Australia. Tate is 8 and has cerebral palsy. He reminds me exactly of Nick, his personality and determination, so many things. I just got done blogging about opportunities in my last post, logged onto Facebook, and a friend shared this story on Cerebral Palsy Family on Facebook. I laughed and cried and was inspired, and could relate!
Please take the time to watch and pass this on. There are also some Youtube Videos on Tate Kemp I saw on Exceptional Family TV on Facebook. If you go to Youtube and type his name in the search box, I would imagine they'll come up.
Here's the video and link below:
http://au.tv.yahoo.com/sunday-night/video/-/watch/22880747
Blessings:)
Amy
Nick's Wrestling Schedule and What It Takes for Nick to Wrestle
Hi all,
What does it take for Nick to wrestle? A LOT on his part mostly and a little help too from Team Hyndman, including his PaPa Jagel. More about that in a minute.....
People have been asking so I am posting Nick's wrestling schedule (Perrysburg High School's Wrestling Schedule) on the blog, on Facebook (on Cerebral Palsy Family on Facebook), and I e-mailed it to my contacts as well.
Perrysburg High School Wrestling has a website at http://www.phswrestling.org/. It has a link on the website also to their Facebook Page. Dates and information are on both the website and Facebook.
I scanned a copy of the Jr. Varsity and the Varsity Schedules, which are of course different in some meets, etc. As of today, 11/12/10, we don't know whether Nick is wrestling JV or Varsity. Here are the schedules:
What does it take for Nick to wrestle? A LOT on his part mostly and a little help too from Team Hyndman, including his PaPa Jagel. More about that in a minute.....
People have been asking so I am posting Nick's wrestling schedule (Perrysburg High School's Wrestling Schedule) on the blog, on Facebook (on Cerebral Palsy Family on Facebook), and I e-mailed it to my contacts as well.
Perrysburg High School Wrestling has a website at http://www.phswrestling.org/. It has a link on the website also to their Facebook Page. Dates and information are on both the website and Facebook.
I scanned a copy of the Jr. Varsity and the Varsity Schedules, which are of course different in some meets, etc. As of today, 11/12/10, we don't know whether Nick is wrestling JV or Varsity. Here are the schedules:
Nick is really looking forward to this wrestling season, only his second ever, but this is his senior year. It's hard work for anyone, and with Nick having CP, it is even harder for him. Last season, he was in a lot of pain but he worked through it and gained SO much strength and his walking improved a lot! Because we don't know yet if he'll be JV or Varsity, and because of the fact that Nick tends to get sick easily and more frequently, if you want to come to see Nick wrestle, contact Greg on his cell phone to see if and where, what time he'll be wrestling. We decided to do it that way because things can change day to day with Nick. So, for that reason, we're giving out Greg's cell phone which is 419-699-8515. If he can't answer (if he's at work or busy), leave a message and he'll get back to you. Otherwise, people may show up when Nick isn't wrestling, which happened last year.
Next week is wrestling pictures, ordering wrestling shirts, etc., and we are having a cookie dough fund-raiser for the team. We are PROUD parents/wrestling parents and are glad to do it all! These are the kinds of things you wish for when your child has a disability, just that he can participate, and then we can't complain when all of the expenses and time-consuming things come along with it!
It is a little different for Nick/us to make this work. As Nick needs physical assistance with his AFO (leg braces) which he wears to school and some things with getting dressed/undressed for wrestling, Greg or my Dad /PaPa Jagel (on the days Greg is working) has to go to school (as they go into the boys locker room, I can't exactly go and help Nick and he wouldn't want that either!) to pick up Charger, Nick's service dog and bring him home (it's a long day for Charger by then AND besides, Nick can't keep an eye on him, take him out, etc. during practice or meets), go back and help Nick undress (with his AFO's, FM system, hearing aids, and the normal stuff-he needs some help) and dress for practice (he can't get on the wrestling shoes or tie them either). Then, many times, when they go to other schools or places for meets, they don't have a bus that can accommodate a wheelchair so we have to transport Nick separately sometimes. (most of the time) So, for four months, we, along with Nick, have wrestling 6 days a week (some weeks 5) and over holiday breaks too. It's a lot, a big commitment for Nick, the whole team, the parents, and us with having to physically help and transport Nick. Having said that though, just to explain it really, we are glad to do it! We are glad to do it because for YEARS, since first grade, Nick said he wanted to "play sports, run" with the kids at his school, on his school teams. Until last year, he was not able to do that. It was totally Nick's idea last year to wrestle and the experience was great. HE made his dream come true. So how can we complain or say no to that? We, and others, take these kinds of things for granted. We have the choice and opportunity to do everything our bodies allow us to. So, if we can't do it, we still have the choice or opportunity. Nick never had the opportunity.
I've always said, I wanted Nick to have all of the opportunities in life that he would have if he did not have a disability. Now, I'm not crazy. I know that this may not always be possible, but THIS is the goal we shoot for and try to make happen in every way we can. It's about having the opportunity and/or different ways of doing things at times for Nick. Would we love a miracle, a cure for cerebral palsy? SURE! We are realistic, however, and just try to shoot for the highest possible outcome short of that miracle cure. We're painfully grounded in reality at times and aware of Nick's situation and disability, but we choose on most days and times to focus on his abilities instead, and on creating and giving him every opportunity to live his life the way he chooses to. Wrestling is just one example of Nick's choosing, one example of him making one of his dreams come true of playing a sport for his school with other kids he goes to school with.
Blessings:)
Amy
Tuesday, November 9, 2010
"Making A Difference" | Exceptional Family TV
Hi all,
A great blog on Exceptional Family TV, www.exceptionalfamilytv.com.
"Making A Difference" Exceptional Family TV
Blessings:)
Amy
A great blog on Exceptional Family TV, www.exceptionalfamilytv.com.
"Making A Difference" Exceptional Family TV
Blessings:)
Amy
Comment from Reader
Hi Amy and family
hope you are all well amy thanks for subscribing to my blog I just have a couple question what were some of the deciding factors in getting Charger I am thinking about getting a service dog for myself but have some reservations in terms of the dogs care as I live in a snowy climate and winter as a manual chair user isn't fun I have enjoyed reading your blog and was also wondering if you would like to do a guest post or two ever?
Hope to hear from you soon
lifeofthedifferentlyabled
--
Blog:
http://www.lifeofthedifferentlyabled.wordpress.com/
rss feed link :
http://feeds.feedburner.com/lifeofthedifferentlyabled
hope you are all well amy thanks for subscribing to my blog I just have a couple question what were some of the deciding factors in getting Charger I am thinking about getting a service dog for myself but have some reservations in terms of the dogs care as I live in a snowy climate and winter as a manual chair user isn't fun I have enjoyed reading your blog and was also wondering if you would like to do a guest post or two ever?
Hope to hear from you soon
lifeofthedifferentlyabled
--
Blog:
http://www.lifeofthedifferentlyabled.wordpress.com/
rss feed link :
http://feeds.feedburner.com/lifeofthedifferentlyabled
Greg's Work Featured on Good Morning America
Hi all,
Good Morning America did a Segment called Work With Me this week and this morning, it featured Greg's work of 13 1/2 years (he'll be there 14 years in April), Northstar Bluescope Steel. Check it out:
http://abcnews.go.com/GMA/work-essay-robert-broun/story?id=12048727
Yes, I am a proud Northstar Bluescope "Widow" as they call it. Greg works a 12 hour swing shift and has for years. You adjust and make it work for you the best way you can! Anyhow, it was a great segment.
Blessings:)
Amy
Good Morning America did a Segment called Work With Me this week and this morning, it featured Greg's work of 13 1/2 years (he'll be there 14 years in April), Northstar Bluescope Steel. Check it out:
http://abcnews.go.com/GMA/work-essay-robert-broun/story?id=12048727
Yes, I am a proud Northstar Bluescope "Widow" as they call it. Greg works a 12 hour swing shift and has for years. You adjust and make it work for you the best way you can! Anyhow, it was a great segment.
Blessings:)
Amy
Monday, November 8, 2010
Update November 8, 2010
Hi all,
Well, Halloween was a lot of fun. Isabella had a GREAT time dressing up and trick-or-treating with her friends and Greg. Nick sat on the porch and enjoyed handing out candy. He's really great with kids and he really seemed to like seeing them all. It was nice for our parents to come by and we had a nice meal to top it off.
Last week, Nick started her driving with the special driving instructor from an agency called Capabilities in St.Mary's, Ohio (about an hour a way from our home). (www.capabilitiesinc.biz) He's doing well and it's going to be a process, but if everyone stays healthy and the weather cooperates, Nick may be ready to take his driving exam for his license by December. It's amazing how much expertise his instructor has and we're glad he's got someone like this helping him and grateful for his suggestions.
Nick also started wrestling practices. If anyone is interested in following their website, Perrysburg High School Wrestling, www.phswrestling.org , and you can sign up to receive e-mails, etc. They also have a Facebook page you can follow. I've already had requests for his schedule and so far we don't have it and it's not on the website yet as of today. I can post it when I receive it or as I receive more info.
Isabella had her school conference last Friday (parent-teacher conferences), which in the 5th grade, are student-led. Greg had to work but I went and you could tell she put a lot of preparation time into it. It was very cute as she first introduced us to each other and then went over her work and goals, etc. Her teacher had only great things to say. One of the many great things he said was how "compassionate" Isabella is. This is no surprise to us as we know she is very kind and compassionate but it was nice that her teachers are seeing it too!:)
This past weekend was busy. Isabella attended her first sibshop meeting on Saturday and loved it. For more information on sibshops ( I know I've already posted about them!), check out www.siblingsupport.org. She had a lot of fun and went on and on telling me all of the fun things they did. She is looking forward to the next meeting in January. There were about 10 kids in her age range who attended the group this week.
Then we attended a friend's 40th birthday party at the Shoreland Park Shelter house, which has been recently newly built (re-built). This is the neighborhood I grew up in from 3rd grade until I got married, so it was right down the street from our old house and I (we) spent LOTS of days at this park and walked to and from school through the park, often cutting across the creek when it was frozen. I know, not safe, and I wouldn't recommend it, but we did it! The kids then had a sleep-over with their cousins and yesterday, we had a nice dinner at my sister's house with her family and our parents, a spur of the moment get together which was really nice. I got to visit with all of the kids but I also got my "baby fix", well, now "toddler fix" with my youngest niece, Lucie, which is always fun. So, it was a busy but fun weekend. Unfortunately, it was Greg's weekend to work BUT he is off next weekend so we hope to get some nice time together then:) We just make sure to enjoy his weekends off and he gets days of during the week when he works weekends, so that is nice too.
Finally, I have to tell you what happened this week. I had a flashback to 1986, one night, Greg's Mom and I were waiting for him to come home from football practice. It was Greg's senior year on the Waite High School Football Team. Back then (mid-80s!), Greg had long, thick, really nice hair. It's still thick today but not a long! Anyhow, he walked in the house and he and the other team members had gotten their heads shaved, one side had a "W" on it and the other side, his number. His Mom and I both cried, because we weren't expecting it and he had such nice hair, but we came around and it of course grew back! Well, this has been a favorite story for our kids on those nights when they ask us to tell story after story about when we were growing up.
Forward to this week, 2010. Greg took Nick out for a haircut and when they returned, they came in, I didn't see Nick, but I assumed he'd get his hair shaved for wrestling. I commented to Greg that they were done a really long time. He said to me, "Let me explain" and with those words, I instantly KNEW (and was right) that Nick did something special to his hair. Yep, he got it shaved, one side with a "P" and one side with "11" for his senior year of wrestling. This time around, I was very "zen" about it, as it is just hair and it will grow back, and I knew it was a fun, priceless experience for Greg to take Nick to do this as he had done it over 20 years ago. For that reason, I knew Nick thought it was kind of special too. Very cool!:) We laughed and laughed.
I'll post a couple of Halloween pics soon and get a few pics of Nick's head and try to post them too soon. Until next time, stay healthy and safe:)
Blessings:)
Amy
Well, Halloween was a lot of fun. Isabella had a GREAT time dressing up and trick-or-treating with her friends and Greg. Nick sat on the porch and enjoyed handing out candy. He's really great with kids and he really seemed to like seeing them all. It was nice for our parents to come by and we had a nice meal to top it off.
Last week, Nick started her driving with the special driving instructor from an agency called Capabilities in St.Mary's, Ohio (about an hour a way from our home). (www.capabilitiesinc.biz) He's doing well and it's going to be a process, but if everyone stays healthy and the weather cooperates, Nick may be ready to take his driving exam for his license by December. It's amazing how much expertise his instructor has and we're glad he's got someone like this helping him and grateful for his suggestions.
Nick also started wrestling practices. If anyone is interested in following their website, Perrysburg High School Wrestling, www.phswrestling.org , and you can sign up to receive e-mails, etc. They also have a Facebook page you can follow. I've already had requests for his schedule and so far we don't have it and it's not on the website yet as of today. I can post it when I receive it or as I receive more info.
Isabella had her school conference last Friday (parent-teacher conferences), which in the 5th grade, are student-led. Greg had to work but I went and you could tell she put a lot of preparation time into it. It was very cute as she first introduced us to each other and then went over her work and goals, etc. Her teacher had only great things to say. One of the many great things he said was how "compassionate" Isabella is. This is no surprise to us as we know she is very kind and compassionate but it was nice that her teachers are seeing it too!:)
This past weekend was busy. Isabella attended her first sibshop meeting on Saturday and loved it. For more information on sibshops ( I know I've already posted about them!), check out www.siblingsupport.org. She had a lot of fun and went on and on telling me all of the fun things they did. She is looking forward to the next meeting in January. There were about 10 kids in her age range who attended the group this week.
Then we attended a friend's 40th birthday party at the Shoreland Park Shelter house, which has been recently newly built (re-built). This is the neighborhood I grew up in from 3rd grade until I got married, so it was right down the street from our old house and I (we) spent LOTS of days at this park and walked to and from school through the park, often cutting across the creek when it was frozen. I know, not safe, and I wouldn't recommend it, but we did it! The kids then had a sleep-over with their cousins and yesterday, we had a nice dinner at my sister's house with her family and our parents, a spur of the moment get together which was really nice. I got to visit with all of the kids but I also got my "baby fix", well, now "toddler fix" with my youngest niece, Lucie, which is always fun. So, it was a busy but fun weekend. Unfortunately, it was Greg's weekend to work BUT he is off next weekend so we hope to get some nice time together then:) We just make sure to enjoy his weekends off and he gets days of during the week when he works weekends, so that is nice too.
Finally, I have to tell you what happened this week. I had a flashback to 1986, one night, Greg's Mom and I were waiting for him to come home from football practice. It was Greg's senior year on the Waite High School Football Team. Back then (mid-80s!), Greg had long, thick, really nice hair. It's still thick today but not a long! Anyhow, he walked in the house and he and the other team members had gotten their heads shaved, one side had a "W" on it and the other side, his number. His Mom and I both cried, because we weren't expecting it and he had such nice hair, but we came around and it of course grew back! Well, this has been a favorite story for our kids on those nights when they ask us to tell story after story about when we were growing up.
Forward to this week, 2010. Greg took Nick out for a haircut and when they returned, they came in, I didn't see Nick, but I assumed he'd get his hair shaved for wrestling. I commented to Greg that they were done a really long time. He said to me, "Let me explain" and with those words, I instantly KNEW (and was right) that Nick did something special to his hair. Yep, he got it shaved, one side with a "P" and one side with "11" for his senior year of wrestling. This time around, I was very "zen" about it, as it is just hair and it will grow back, and I knew it was a fun, priceless experience for Greg to take Nick to do this as he had done it over 20 years ago. For that reason, I knew Nick thought it was kind of special too. Very cool!:) We laughed and laughed.
I'll post a couple of Halloween pics soon and get a few pics of Nick's head and try to post them too soon. Until next time, stay healthy and safe:)
Blessings:)
Amy
Monday, November 1, 2010
Looking Back-Wrestling Last Year
Hi all,
Nick's starting wrestling AND driving with his special driving instructor after wrestling. I was watching video of Nick wrestling last year and reading the Blade article again. If you haven't had a chance to see it, here are the links below:
www.youtube.com/watch?v=ynJ1l4Cj03c
http://www.youtube.com/watch?v=Cc0p7jzcuwQ
http://www.toledoblade.com/apps/pbcs.dll/article?AID=/20100113/COLUMNIST08/301139998
There are LOTS of posts from Jan.Feb. of 2010 re: the whole wrestling thing, and other months too around there. I hope Nick has a great experience again this year with wrestling in his senior year!:)
Blessings:)
Amy
Nick's starting wrestling AND driving with his special driving instructor after wrestling. I was watching video of Nick wrestling last year and reading the Blade article again. If you haven't had a chance to see it, here are the links below:
www.youtube.com/watch?v=ynJ1l4Cj03c
http://www.youtube.com/watch?v=Cc0p7jzcuwQ
http://www.toledoblade.com/apps/pbcs.dll/article?AID=/20100113/COLUMNIST08/301139998
There are LOTS of posts from Jan.Feb. of 2010 re: the whole wrestling thing, and other months too around there. I hope Nick has a great experience again this year with wrestling in his senior year!:)
Blessings:)
Amy
Saturday, October 30, 2010
October 2010 Update
Hi all,
We hope everyone has a safe and fun Halloween tomorrow!
We're enjoying a fun Halloween weekend as a family. Dinner last night and a football game, Halloween/scary movies tonight and tomorrow, of course, trick-or-treating for Isabella. Nick, of course, declared he was "too old" for trick-or-treating back in Jr. High. Bella is going to be a candy-corn (good) witch this year and our family is coming over too. The kids want a special dinner of Philly steak sandwiches and creamy squash soup tomorrow and I'm going to attempt these "chocolate-orange" Halloween cupcakes I saw on Food Network. I am NOT a master chef by any means, but I can follow a recipe. My food never "looks" beautiful, because I don't have the patience to make it "perfect" but it still tastes good enough for my family:) We're getting over bouts of strep throat and other viruses and I think everyone is pretty healthy for the moment.
The major update is that Nick starts wrestling at school this coming week. For anyone who doesn't know, he did this for the first time last year and it was a great experience overall for him. We have a lot of blog posts, newspaper articles, etc. from this time last year telling all about it.
Also, FINALLY, Nick is starting the driving portion of his drivers ed training. He took the classroom portion and aced it in the summer but we had to go through all kinds of "hoops" and extra steps to get this part arranged, starting with getting approval from the State of Ohio which required an evaluation and doctor's signature. The doctor, who has known Nick for 17 years was "hesitant" to sign it even though he's been doing great driving and has had a special evaluation with an OT, etc. She finally did sign it after some time passed and the State approved it. We contracted with a special driving instructor from St. Mary's, Ohio who will actually come to our home fore the instruction starting this Monday and several days after. He is bringing a vehicle with hand controls, etc. This is all VERY expensive and we were able to get some assistance from the State for the cost for once, thanks to the Bridges to Transition Program. (thank you!) Once this is all completed, Nick has to be evaluated AGAIN before the doctor will sign AGAIN and the State will allow him to take the test to get his license. (we got a letter from the State this week telling us this!) Then we have to figure out how to get Nick a vehicle (easiest thing would be a van) with a lift and all of the modifications he'll need, hand-controls, a special turn signal, and the lift is the most expensive thing. All together, about $12000 worth of modifications we priced. When we found that out, we just put that task aside given the time we had to put into getting the driving, and the time we're putting now into college planning. I guess we'll deal with that later when we have to! One (or two) things at a time:)
I have to say, the past 17 years have been a roller coaster of emotions for us and we've been doing pretty well for awhile now. I admit that I just push the emotions aside to live our daily lives and this has worked well for me I guess. With this driving situation and all of the extra steps we have to take for college visits and disability services at college ,this has left Greg and I feeling VERY frustrated. To add to that, I just feel like I could cry and I get angry about these things with Nick lately. It's not helpful, I know, but I haven't been able to control it well and I know it won't change the situation. It's not like we didn't know Nick's situation before all of this. It's just that it is hitting us again, with all of the stuff going on this year. Anger, frustration, envy of others not in our situation ( I hate that one especially!), and sadness on one side. Pride, happiness (for Nick), excitement (for Nick) on the other side. Bittersweet is a word I use often and it describes this range of emotions we're feeling perfectly.
We are so happy on one hand that we are HERE, Nick's senior year, getting ready for graduation, etc. WOW, that's emotional thinking back when we were told, asked, etc. by school professionals even in Jr. High if this would be possible. Then, the part I hate to talk about..........because I am ashamed of this, it is VERY hard for us (mostly me) to see our friends and family who have kids Nick's age and they are starting to drive, apply for colleges, etc. and it seems so simple, they just "do it", no extra steps, and I'm so happy for them, but it is hard when I think about how hard it has been for Nick. Like Greg said, he wonders how many parents take their kid into the BMV to get their license and are told they can't do it without a doctor's approval, even though they got their temps, etc. How many parents have to pay thousands of dollars to make that happen? Of course, we don't want any of our friends and families to have to experience this! It's NOT really about them. It's about us realizing, once again, the reality of the situation and I don't know why it still hurts so much! People keep asking Nick at school if he's applied, etc. for college. We are thinking, of course, of the fact that just to visit, we are making arrangements with the disability services departments to see if they can provide the accommodations Nick needs and are all of the buildings wheelchair accessible, the cost of these accommodations, ETC. Everything just seems to take Nick/us longer because of these extra steps. I always tell Nick not to compare himself with others and this is not a race, but I get so upset when people ask us if we've done this or that yet. I know it seems like I'm overly sensitive. Maybe I am, but this is what we're feeling and of course, we'll get through it together. We always do. We just feel as sad sometimes lately as we did when Nick was younger. We didn't expect that at all!
By the way, we don't want our friends and family NOT to share their great news with us, we love it. As I said, it is not about you! It's about us and Nick and our own grief, which apparently can pop up for years, as we're finding out.
One final note, Bella got all A's and Nick got all A's and a B+ on their grade cards this week. Needless to say, we're very proud of them:) Nick's GPA is 3.72 so far. We think that is amazing and shows how hard he's worked with all of the extra challenges he's had to overcome. Yeah Bella and Nick!:)
Blessings:)
Amy
We hope everyone has a safe and fun Halloween tomorrow!
We're enjoying a fun Halloween weekend as a family. Dinner last night and a football game, Halloween/scary movies tonight and tomorrow, of course, trick-or-treating for Isabella. Nick, of course, declared he was "too old" for trick-or-treating back in Jr. High. Bella is going to be a candy-corn (good) witch this year and our family is coming over too. The kids want a special dinner of Philly steak sandwiches and creamy squash soup tomorrow and I'm going to attempt these "chocolate-orange" Halloween cupcakes I saw on Food Network. I am NOT a master chef by any means, but I can follow a recipe. My food never "looks" beautiful, because I don't have the patience to make it "perfect" but it still tastes good enough for my family:) We're getting over bouts of strep throat and other viruses and I think everyone is pretty healthy for the moment.
The major update is that Nick starts wrestling at school this coming week. For anyone who doesn't know, he did this for the first time last year and it was a great experience overall for him. We have a lot of blog posts, newspaper articles, etc. from this time last year telling all about it.
Also, FINALLY, Nick is starting the driving portion of his drivers ed training. He took the classroom portion and aced it in the summer but we had to go through all kinds of "hoops" and extra steps to get this part arranged, starting with getting approval from the State of Ohio which required an evaluation and doctor's signature. The doctor, who has known Nick for 17 years was "hesitant" to sign it even though he's been doing great driving and has had a special evaluation with an OT, etc. She finally did sign it after some time passed and the State approved it. We contracted with a special driving instructor from St. Mary's, Ohio who will actually come to our home fore the instruction starting this Monday and several days after. He is bringing a vehicle with hand controls, etc. This is all VERY expensive and we were able to get some assistance from the State for the cost for once, thanks to the Bridges to Transition Program. (thank you!) Once this is all completed, Nick has to be evaluated AGAIN before the doctor will sign AGAIN and the State will allow him to take the test to get his license. (we got a letter from the State this week telling us this!) Then we have to figure out how to get Nick a vehicle (easiest thing would be a van) with a lift and all of the modifications he'll need, hand-controls, a special turn signal, and the lift is the most expensive thing. All together, about $12000 worth of modifications we priced. When we found that out, we just put that task aside given the time we had to put into getting the driving, and the time we're putting now into college planning. I guess we'll deal with that later when we have to! One (or two) things at a time:)
I have to say, the past 17 years have been a roller coaster of emotions for us and we've been doing pretty well for awhile now. I admit that I just push the emotions aside to live our daily lives and this has worked well for me I guess. With this driving situation and all of the extra steps we have to take for college visits and disability services at college ,this has left Greg and I feeling VERY frustrated. To add to that, I just feel like I could cry and I get angry about these things with Nick lately. It's not helpful, I know, but I haven't been able to control it well and I know it won't change the situation. It's not like we didn't know Nick's situation before all of this. It's just that it is hitting us again, with all of the stuff going on this year. Anger, frustration, envy of others not in our situation ( I hate that one especially!), and sadness on one side. Pride, happiness (for Nick), excitement (for Nick) on the other side. Bittersweet is a word I use often and it describes this range of emotions we're feeling perfectly.
We are so happy on one hand that we are HERE, Nick's senior year, getting ready for graduation, etc. WOW, that's emotional thinking back when we were told, asked, etc. by school professionals even in Jr. High if this would be possible. Then, the part I hate to talk about..........because I am ashamed of this, it is VERY hard for us (mostly me) to see our friends and family who have kids Nick's age and they are starting to drive, apply for colleges, etc. and it seems so simple, they just "do it", no extra steps, and I'm so happy for them, but it is hard when I think about how hard it has been for Nick. Like Greg said, he wonders how many parents take their kid into the BMV to get their license and are told they can't do it without a doctor's approval, even though they got their temps, etc. How many parents have to pay thousands of dollars to make that happen? Of course, we don't want any of our friends and families to have to experience this! It's NOT really about them. It's about us realizing, once again, the reality of the situation and I don't know why it still hurts so much! People keep asking Nick at school if he's applied, etc. for college. We are thinking, of course, of the fact that just to visit, we are making arrangements with the disability services departments to see if they can provide the accommodations Nick needs and are all of the buildings wheelchair accessible, the cost of these accommodations, ETC. Everything just seems to take Nick/us longer because of these extra steps. I always tell Nick not to compare himself with others and this is not a race, but I get so upset when people ask us if we've done this or that yet. I know it seems like I'm overly sensitive. Maybe I am, but this is what we're feeling and of course, we'll get through it together. We always do. We just feel as sad sometimes lately as we did when Nick was younger. We didn't expect that at all!
By the way, we don't want our friends and family NOT to share their great news with us, we love it. As I said, it is not about you! It's about us and Nick and our own grief, which apparently can pop up for years, as we're finding out.
One final note, Bella got all A's and Nick got all A's and a B+ on their grade cards this week. Needless to say, we're very proud of them:) Nick's GPA is 3.72 so far. We think that is amazing and shows how hard he's worked with all of the extra challenges he's had to overcome. Yeah Bella and Nick!:)
Blessings:)
Amy
Tuesday, October 26, 2010
Monica and David (HBO) and UCPs Newsletter
Hi all,
http://us1.campaign-archive.com/?u=2a0f8e7077be7d116c18c3273&id=850096678c#Award%20Winning%20Documentary,%20MONICA%20&%20DAVID,%20World%20Broadcast%20Premiere%20is%20Thursday,%20October%2014%20on%20HBO
The above link is to UCP's (United Cerebral Palsy) Newsletter for October 2010. You can sign up on their site to receive the newsletter monthly via e-mail. www.ucp.org. Anyhow, there is an article/notice about a new HBO documentary called Monica and David (premiered October 14, 2010). It's about a couple with Downs Syndrome who get married. I'm watching it as I write and it's GREAT! It's relevant to any parent or family member of an older or adult child with any disability who is preparing for adulthood and life after high school (as we are!). I recommend watching it if you have access to HBO. Also, sign up for UCPs newsletter. You get a lot of great information!
Blessings:)
Amy
http://us1.campaign-archive.com/?u=2a0f8e7077be7d116c18c3273&id=850096678c#Award%20Winning%20Documentary,%20MONICA%20&%20DAVID,%20World%20Broadcast%20Premiere%20is%20Thursday,%20October%2014%20on%20HBO
The above link is to UCP's (United Cerebral Palsy) Newsletter for October 2010. You can sign up on their site to receive the newsletter monthly via e-mail. www.ucp.org. Anyhow, there is an article/notice about a new HBO documentary called Monica and David (premiered October 14, 2010). It's about a couple with Downs Syndrome who get married. I'm watching it as I write and it's GREAT! It's relevant to any parent or family member of an older or adult child with any disability who is preparing for adulthood and life after high school (as we are!). I recommend watching it if you have access to HBO. Also, sign up for UCPs newsletter. You get a lot of great information!
Blessings:)
Amy
"Each of Us Remember...Parents of Children with Cerebral Palsy Answer Your Questions"
Hi all,
I found this great article/guide at www.ucp.org.
"Each of Us Remember...Parents of Children with Cerebral Palsy Answer Your Questions"
Blessings:)
Amy
I found this great article/guide at www.ucp.org.
"Each of Us Remember...Parents of Children with Cerebral Palsy Answer Your Questions"
Blessings:)
Amy
A Grandmother's Love | Exceptional Family TV
Hi all,
Here is another great post from a grandmother's blog on Exceptional Family TV. For those of you who have not checked out this web-based TV show and their website, I highly recommend it for individuals with disabilities, their families (extended too) and friends, and professionals as well. It's at www.exceptionalfamilytv.com. I know I've mentioned it a few times, but I continue to find great information and blog posts on here! If you know any grandparents of an child or adult with disabilities, please pass this on to them! Thank you! Here's the link to the post:
A Grandmother's Love Exceptional Family TV
Blessings:)
Amy
Here is another great post from a grandmother's blog on Exceptional Family TV. For those of you who have not checked out this web-based TV show and their website, I highly recommend it for individuals with disabilities, their families (extended too) and friends, and professionals as well. It's at www.exceptionalfamilytv.com. I know I've mentioned it a few times, but I continue to find great information and blog posts on here! If you know any grandparents of an child or adult with disabilities, please pass this on to them! Thank you! Here's the link to the post:
A Grandmother's Love Exceptional Family TV
Blessings:)
Amy
Monday, October 25, 2010
Call Out to Grandmother’s Everywhere | Exceptional Family TV
Hi all,
Here's the link to a GREAT blog on Exceptional Family TV (www.exceptionalfamilytv.com) written by a grandmother of a child with a disability (athetoid cerebral palsy like Nick).
Call Out to Grandmother’s Everywhere Exceptional Family TV
Blessings:)
Amy
Here's the link to a GREAT blog on Exceptional Family TV (www.exceptionalfamilytv.com) written by a grandmother of a child with a disability (athetoid cerebral palsy like Nick).
Call Out to Grandmother’s Everywhere Exceptional Family TV
Blessings:)
Amy
Tuesday, October 12, 2010
Christopher Reeve Quote
"When we have hope, we discover powers within ourselves we may have never known-the power to make sacrifices, to endure, to heal and to love. Once we choose hope, everything is possible." ~Christopher Reeve
This was originally posted on Exceptional Family's FB page.
Blessings:) Amy
This was originally posted on Exceptional Family's FB page.
Blessings:) Amy
Monday, October 11, 2010
Inclusion? | Exceptional Family TV
Inclusion? Exceptional Family TV
A great blog post on Exceptional Family TV-caught my eye. I, of course, have a lot to say on this topic, which I will write about another time. Anyhow, this is a good post to read!
Blessings:)
Amy
A great blog post on Exceptional Family TV-caught my eye. I, of course, have a lot to say on this topic, which I will write about another time. Anyhow, this is a good post to read!
Blessings:)
Amy
Great Article-Must Read
Hi all,
A friend gave me this article, which was written in the late 1980s. The terminology is a little dated but I can say that the issues are as relevant today as they ever were. I feel like this article describes Nick's experiences and my feelings about it VERY WELL! Here it is:
Carolyn Daniel Speaks Out for Her Son
Burlington, Kentucky-Some moms and dads fight like Tigers to get their children with severe disabilities into their own neighborhood schools, rather than have them bused to faraway segregated schools every day. And once their sons or daughters get into local schools, those parents fight just as fiercely so that their children can occupy seats in regular instead of special classes. Even then, some parents like the writer of the following article, feel there is more to fight for:
Wanted: Just One Friend
How many times have I said, “If my son could just make one friend at school, everything would be fine!”
Of course, everything would not be fine. There would always be problems. My son is handicapped, you see. Dealing with OT, PT, IEPs, LREs and the dozen other acronyms we parents face will always be a problem. But we deal with them, and with the help of “experts”, we will hopefully fix what can be fixed.
The social problems our children face are truly heartbreaking. We as parents (who are supposed to be able to “fix” everything) are helpless. Can and should we “buy” them friends? Can a real friend be bought?
My son has cerebral palsy, attention deficit disorder with hyperactivity, and is learning disabled. He is in the fourth grade at our neighborhood school, and the only special ed classes he receives is an LD (learning disabled) resource room for math. He does average (or better) school work, dresses in the latest styles (demanding “hi-top” Reeboks even though Velcro had meant independence), loves MTV and Garbage Pail Kids, is well liked by his teachers and office staff, and…doesn’t have one friend at school. No one to “spend the night”, eat lunch with, or even walk down the hall with.
We have tried engineering friendships with swim parties, overnights, movies, and McDonald’s, only to have him waiting by the phone for that call that never comes-the invitation to their house.
This isolation takes its toll in many ways. Parents feel helpless and heartbroken. The child begins to lose interest in bringing home the good grades he is capable of. Who cares, anyway? Everyone else at school is talking about “so and so’s” party last week and he wasn’t invited or worse, was invited and ignored. It causes emotionally immature LD and hyperactive adolescents to “act out” behaviors that usually result in attracting only the principal’s attention. It causes a myriad of problems, but mostly a sad, lonely child.
My son is not mistreated by his classmates. On the contrary, they “mother” him. When I expressed concern to the school personnel, I’ve been told: “The other children love him-they help him all the time!” I hate to sound ungrateful, but helping and liking are vastly different things!
Public Law 94-142 (the U.S. government law calling for a full-service education for all children regardless of disability) gave our children the right to attend their neighborhood schools and receive an appropriate education. It has been enormously successful. But a far greater battle lies ahead-true acceptance of our handicapped children into their schools.
I sincerely wish this had a happy ending. That he found that “best friend” we all remember from our school days. That one special friend that shared our innermost secrets, that laughed with us, cried with us, and always was there to play with us. Maybe someday my son will find that person who will see beyond his disabilities and take the time to get to know what a bright and funny little guy he is.
If I thought it would work, I would run this ad:
WANTED: JUST ONE FRIEND.
MUST LOVE: MUSIC, DOGS, SWIMMING, BIKING, MUD, BUGS, THE FLINTSTONES, COSBY, GARFIELD AND PEANUTS SPECIALS. APPROX. 11 YEARS OF AGE. FOR LIFE.
Daniel, Carolyn. “Wanted: Just One Friend.” Parent to Parent, April 1987 (Tri-State Organized Coalition for Persons with Disabilities).
*I was originally given a copy of this article by a friend. It is also featured in a book called “Circle of Friends: People with Disabilities and Their Friends Enrich the Lives of One Another” by Robert and Martha Perske, 1988.
“When I first read this article, in the late 1990s when my son, Nick, was only about 6 years old, I felt as if the author was speaking directly to me, as if she knew my son and his (our) situation! I couldn’t believe how relevant and heartbreaking it was to me. The article was written in the late 1980s, so the terminology is different, but I can say that the social issues this mother writes about are true and relevant even today with kids (and adults) with disabilities.”
Amy Hyndman, October 2010
Blessings:)
Amy
A friend gave me this article, which was written in the late 1980s. The terminology is a little dated but I can say that the issues are as relevant today as they ever were. I feel like this article describes Nick's experiences and my feelings about it VERY WELL! Here it is:
Carolyn Daniel Speaks Out for Her Son
Burlington, Kentucky-Some moms and dads fight like Tigers to get their children with severe disabilities into their own neighborhood schools, rather than have them bused to faraway segregated schools every day. And once their sons or daughters get into local schools, those parents fight just as fiercely so that their children can occupy seats in regular instead of special classes. Even then, some parents like the writer of the following article, feel there is more to fight for:
Wanted: Just One Friend
How many times have I said, “If my son could just make one friend at school, everything would be fine!”
Of course, everything would not be fine. There would always be problems. My son is handicapped, you see. Dealing with OT, PT, IEPs, LREs and the dozen other acronyms we parents face will always be a problem. But we deal with them, and with the help of “experts”, we will hopefully fix what can be fixed.
The social problems our children face are truly heartbreaking. We as parents (who are supposed to be able to “fix” everything) are helpless. Can and should we “buy” them friends? Can a real friend be bought?
My son has cerebral palsy, attention deficit disorder with hyperactivity, and is learning disabled. He is in the fourth grade at our neighborhood school, and the only special ed classes he receives is an LD (learning disabled) resource room for math. He does average (or better) school work, dresses in the latest styles (demanding “hi-top” Reeboks even though Velcro had meant independence), loves MTV and Garbage Pail Kids, is well liked by his teachers and office staff, and…doesn’t have one friend at school. No one to “spend the night”, eat lunch with, or even walk down the hall with.
We have tried engineering friendships with swim parties, overnights, movies, and McDonald’s, only to have him waiting by the phone for that call that never comes-the invitation to their house.
This isolation takes its toll in many ways. Parents feel helpless and heartbroken. The child begins to lose interest in bringing home the good grades he is capable of. Who cares, anyway? Everyone else at school is talking about “so and so’s” party last week and he wasn’t invited or worse, was invited and ignored. It causes emotionally immature LD and hyperactive adolescents to “act out” behaviors that usually result in attracting only the principal’s attention. It causes a myriad of problems, but mostly a sad, lonely child.
My son is not mistreated by his classmates. On the contrary, they “mother” him. When I expressed concern to the school personnel, I’ve been told: “The other children love him-they help him all the time!” I hate to sound ungrateful, but helping and liking are vastly different things!
Public Law 94-142 (the U.S. government law calling for a full-service education for all children regardless of disability) gave our children the right to attend their neighborhood schools and receive an appropriate education. It has been enormously successful. But a far greater battle lies ahead-true acceptance of our handicapped children into their schools.
I sincerely wish this had a happy ending. That he found that “best friend” we all remember from our school days. That one special friend that shared our innermost secrets, that laughed with us, cried with us, and always was there to play with us. Maybe someday my son will find that person who will see beyond his disabilities and take the time to get to know what a bright and funny little guy he is.
If I thought it would work, I would run this ad:
WANTED: JUST ONE FRIEND.
MUST LOVE: MUSIC, DOGS, SWIMMING, BIKING, MUD, BUGS, THE FLINTSTONES, COSBY, GARFIELD AND PEANUTS SPECIALS. APPROX. 11 YEARS OF AGE. FOR LIFE.
Daniel, Carolyn. “Wanted: Just One Friend.” Parent to Parent, April 1987 (Tri-State Organized Coalition for Persons with Disabilities).
*I was originally given a copy of this article by a friend. It is also featured in a book called “Circle of Friends: People with Disabilities and Their Friends Enrich the Lives of One Another” by Robert and Martha Perske, 1988.
“When I first read this article, in the late 1990s when my son, Nick, was only about 6 years old, I felt as if the author was speaking directly to me, as if she knew my son and his (our) situation! I couldn’t believe how relevant and heartbreaking it was to me. The article was written in the late 1980s, so the terminology is different, but I can say that the social issues this mother writes about are true and relevant even today with kids (and adults) with disabilities.”
Amy Hyndman, October 2010
Blessings:)
Amy
Saturday, October 9, 2010
Shay Day
Hi all,
A friend gave this to me and I thought it was really inspiring. Given all of the news lately highlighting the very real problem of bullying, this story was a refreshing and hopeful reminder of how others can be kind. Kindness goes as long way. I hope my children grow up to be kind and good to others above everything else they accomplish in their lives.
Anyhow, here it is:
SHAY DAY
I do not know where this story originated or if it is factual, but it touched my heart and is worth taking the time to read.
At a fundraising dinner for a school that serves learning disabled children, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question:
" When not interfered with outside influences, everything nature does is done with perfection. Yet my son Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"
The audience was stilled by the query.The father continued. "I believe, that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and comes, in the way other people treat that child."
Then he told the following story:
Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they'll let me play?" Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.Shay's father approached one of the boys on the field and asked if Shay could play, not expecting much. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning, I guess he can be on our team and we'll try to put him to bat in the ninth inning." Shay's father approached one of the boys on the field and asked if Shay could play, not expecting much. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning, I guess he can be on our team and we'll try to put him to bat in the ninth inning."Shay struggled over to the team's bench, put on a team shirt with a broad smile and his Father had a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth ining, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.However, as Shay stepped up to the plate, the pitcher, recognizing the other team putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least be able to make contact. The first pitch came and Shay swung clumsiland missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.The game would now be over, but the pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.Instead, the pitcher threw the ball right over the head of the first baseman, out of the reach of all the teammates. Everyone from the stands and both teams started yelling,"Shay, run to first!" Never in his life had Shay ever ran that far but made it to first base. He scampered down the baseline, wide-eyed and startled.Everyone yelled, "Run to second, run to second!" Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to second base. By this time Shay rounded towards second base. The right fielder had the ball. The smallest guy on their team had a chance to be the hero for his team for the first time in his life. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions and he too intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home. All were screaming, "Shay, Shay, Shay, all the Way Shay"Shay reached third base, the opposing shortstop ran to help him and turned him the direction of third base, and shouted, "Run to third! Shay, run to third". As Shay rounded third, the boys from both teams and those watching were on their feet screaming, "Shay, run home! Shay ran to home, stepped on the plate, and cheered as the hero who hit the "grand slam" and won the game for his team.
That day, said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and humanity into this world". Shay didn't make it another summer and died that winter, having never forgotten being the hero and making his Father so happy and coming home and seeing his Mother tearfully embrace her little hero of the day!
May your day be a Shay Day, sunny today, tomorrow, and always! - from a friend
A friend gave this to me and I thought it was really inspiring. Given all of the news lately highlighting the very real problem of bullying, this story was a refreshing and hopeful reminder of how others can be kind. Kindness goes as long way. I hope my children grow up to be kind and good to others above everything else they accomplish in their lives.
Anyhow, here it is:
SHAY DAY
I do not know where this story originated or if it is factual, but it touched my heart and is worth taking the time to read.
At a fundraising dinner for a school that serves learning disabled children, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question:
" When not interfered with outside influences, everything nature does is done with perfection. Yet my son Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"
The audience was stilled by the query.The father continued. "I believe, that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and comes, in the way other people treat that child."
Then he told the following story:
Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they'll let me play?" Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.Shay's father approached one of the boys on the field and asked if Shay could play, not expecting much. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning, I guess he can be on our team and we'll try to put him to bat in the ninth inning." Shay's father approached one of the boys on the field and asked if Shay could play, not expecting much. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning, I guess he can be on our team and we'll try to put him to bat in the ninth inning."Shay struggled over to the team's bench, put on a team shirt with a broad smile and his Father had a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth ining, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.However, as Shay stepped up to the plate, the pitcher, recognizing the other team putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least be able to make contact. The first pitch came and Shay swung clumsiland missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.The game would now be over, but the pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.Instead, the pitcher threw the ball right over the head of the first baseman, out of the reach of all the teammates. Everyone from the stands and both teams started yelling,"Shay, run to first!" Never in his life had Shay ever ran that far but made it to first base. He scampered down the baseline, wide-eyed and startled.Everyone yelled, "Run to second, run to second!" Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to second base. By this time Shay rounded towards second base. The right fielder had the ball. The smallest guy on their team had a chance to be the hero for his team for the first time in his life. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions and he too intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home. All were screaming, "Shay, Shay, Shay, all the Way Shay"Shay reached third base, the opposing shortstop ran to help him and turned him the direction of third base, and shouted, "Run to third! Shay, run to third". As Shay rounded third, the boys from both teams and those watching were on their feet screaming, "Shay, run home! Shay ran to home, stepped on the plate, and cheered as the hero who hit the "grand slam" and won the game for his team.
That day, said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and humanity into this world". Shay didn't make it another summer and died that winter, having never forgotten being the hero and making his Father so happy and coming home and seeing his Mother tearfully embrace her little hero of the day!
May your day be a Shay Day, sunny today, tomorrow, and always! - from a friend
Blessings:) Amy
Thursday, October 7, 2010
4th Annual 31 for 21 Blog Challenge
Grab This Button
It's that time of year again...the 31 for 21 Blog Challenge to Raise Awareness of Down Syndrome!
Though I know I am barely even getting the word out in time, I am hoping some of you (Hello? Is there anybody out there? *crickets chirping*) will join me.
Here are the rules:
1. Sign up using the Mister Linky form below.
2. Commit to blogging in your blog everyday for the month of October (which is Down syndrome Awareness Month).
3. And then...um...blog in your blog everyday for the month of October!
You can choose to write about life with DS or...not. It's up to you. But if you at least mention the challenge and start writing EVERYDAY it's bound to go NOTICED. Personally, I find that I go back and forth, sometimes I write about DS because hey, it's a part of our life, and sometimes I don't, because hey, guess what? It's just a part of our life!
Here's step 4: Grab the button (by clicking the link that says "Grab this Button above") designed by the lovely RK so people will recognize that we're doing something here! Power in numbers, baby! The button''ll link back to this post and hopefully more people will sign up to participate in the challenge!
See you in October! If you're anything like me, it's a busy month and we'll have PLENTY to blog about!
Happy Blogging and Blessings:)
Amy
Thankful For Friends/Family and The Cost of Education/Inclusion
Hi all,
I just want to start by saying "Thank you God" for my friend Marion Wallace. Marion happens to be a neighbor but she is really a great friend to me and my family. We met when Isabella and her granddaughter, Taylor, were in preschool together and we've been friends ever since. Even if we don't see or talk to each other in awhile, we pick right up where we left off. She's always there for us, in a lot of ways over the years, and just a true friend. I'm SO thankful for her!
That leads me to the gratitude we have for our friends and family. Many families who have kids with disabilities have reported to me over the years that their circle of friends change for a variety of reasons once they have a child with a disability. For us, we found that some people who were our friends, stopped coming around or contacting us after we had Nick. We only have a few friends that have been with us throughout our journey. Whether they felt uncomfortable and didn't know what to say to us, couldn't relate, or we were just too busy and were in a constant crisis for years, it was hurtful. The upside though is that we have met so many good people since we've had Nick that we probably would not have met otherwise, and made some great, lifelong friends along the way. For that, we are so thankful!
It can be hurtful too when family members aren't there for you either. Greg's parents used to have garage sales for us to raise money to buy special equipment for Nick. For instance, his first wheelchair was a stroller wheelchair, because he couldn't hold his head up or sit up in any regular stroller and needed more support. It was $1700 (in 1993) and insurance did not cover it. This is one example of many. Anyhow, we actually had family members who said, "well, we are struggling and need a garage sale too!" (with their healthy kids) I've heard countless stories from friends, some with supportive family like most of our family is, and some with family who felt uncomfortable around their kids, wouldn't help out, etc. and it was hurtful to them. We are thankful for our parents and my sister who helped us out a lot over the years with Nick and our family is very supportive to this day. Sometimes people can be thoughtless and mean-spirited but we are lucky that for the most part, we've had good experiences.
On another note, this week I am ordering graduation announcements for Nick and his cap and gown. As I sat in bed one night reading through the packet of materials featuring all of the things you can order (shirts, key-rings, etc.), and for just one small moment, I thought, "this is expensive!" I stopped myself and felt thankful that we (Nick) have gotten to this moment. I remembered the times we were told this would not happen when Nick was younger. Then I thought how grateful I was to pay any price for this "stuff". People always talk about the "cost" of including/educating kids with disabilities in public schools. We know the cost, literally, as we educated ourselves. We also know the cost we've paid in hours of meetings, hours of extra help with Nick physically and literally with homework, etc. (writing for him, etc.), emotionally (teasing, etc.), and by the way, we pay our taxes, vote for school levies, and pay for all of the "extras"/"stuff" just like everyone else does! We know the cost of inclusion/education for Nick very well. College will be even more with personal attendants and disability supports on top of the tuition, etc. We can honestly say, we're GLAD and thankful to pay this price to see Nick where he is today and where he will be in the future!:)
Blessings:)
Amy
I just want to start by saying "Thank you God" for my friend Marion Wallace. Marion happens to be a neighbor but she is really a great friend to me and my family. We met when Isabella and her granddaughter, Taylor, were in preschool together and we've been friends ever since. Even if we don't see or talk to each other in awhile, we pick right up where we left off. She's always there for us, in a lot of ways over the years, and just a true friend. I'm SO thankful for her!
That leads me to the gratitude we have for our friends and family. Many families who have kids with disabilities have reported to me over the years that their circle of friends change for a variety of reasons once they have a child with a disability. For us, we found that some people who were our friends, stopped coming around or contacting us after we had Nick. We only have a few friends that have been with us throughout our journey. Whether they felt uncomfortable and didn't know what to say to us, couldn't relate, or we were just too busy and were in a constant crisis for years, it was hurtful. The upside though is that we have met so many good people since we've had Nick that we probably would not have met otherwise, and made some great, lifelong friends along the way. For that, we are so thankful!
It can be hurtful too when family members aren't there for you either. Greg's parents used to have garage sales for us to raise money to buy special equipment for Nick. For instance, his first wheelchair was a stroller wheelchair, because he couldn't hold his head up or sit up in any regular stroller and needed more support. It was $1700 (in 1993) and insurance did not cover it. This is one example of many. Anyhow, we actually had family members who said, "well, we are struggling and need a garage sale too!" (with their healthy kids) I've heard countless stories from friends, some with supportive family like most of our family is, and some with family who felt uncomfortable around their kids, wouldn't help out, etc. and it was hurtful to them. We are thankful for our parents and my sister who helped us out a lot over the years with Nick and our family is very supportive to this day. Sometimes people can be thoughtless and mean-spirited but we are lucky that for the most part, we've had good experiences.
On another note, this week I am ordering graduation announcements for Nick and his cap and gown. As I sat in bed one night reading through the packet of materials featuring all of the things you can order (shirts, key-rings, etc.), and for just one small moment, I thought, "this is expensive!" I stopped myself and felt thankful that we (Nick) have gotten to this moment. I remembered the times we were told this would not happen when Nick was younger. Then I thought how grateful I was to pay any price for this "stuff". People always talk about the "cost" of including/educating kids with disabilities in public schools. We know the cost, literally, as we educated ourselves. We also know the cost we've paid in hours of meetings, hours of extra help with Nick physically and literally with homework, etc. (writing for him, etc.), emotionally (teasing, etc.), and by the way, we pay our taxes, vote for school levies, and pay for all of the "extras"/"stuff" just like everyone else does! We know the cost of inclusion/education for Nick very well. College will be even more with personal attendants and disability supports on top of the tuition, etc. We can honestly say, we're GLAD and thankful to pay this price to see Nick where he is today and where he will be in the future!:)
Blessings:)
Amy
Sunday, October 3, 2010
Nick's Homecoming 2010
Hi all,
For those of you that read my blog yesterday about what happened to Greg BEFORE the homecoming dance, it turns out that Nick had a GREAT time at the dance!
Nick told us that it was the "best dance ever" and his date, Kinnis, was adorable. They danced "the entire time minus a 10 min. break" according to Nick. We were SO happy for him. He has a great time at his last homecoming dance, his senior year! What more can you ask for?
Blessings:)
Amy
PS- we didn't get a lot of pictures this year because Nick said he just wanted to "get to the dance!" :)
Job Accommodation Network
Hi all,
www.askjan.org - This is by far one of the most useful/best web sites for job accommodations for individuals with disabilities AS WELL AS great ideas for accommodations for students (even younger students up to adults). You can look up accommodations by disability. It's just a great resource altogether. I've used it for my son at IEPs, as well as for families I've worked with and people I know with disabilities.
I had mentioned this resource once before but their website address has since changed and this is the new one. This is really one of the most useful, helpful websites and it is worth checking out.
I love to share good resources!
Blessings:)
Amy
www.askjan.org - This is by far one of the most useful/best web sites for job accommodations for individuals with disabilities AS WELL AS great ideas for accommodations for students (even younger students up to adults). You can look up accommodations by disability. It's just a great resource altogether. I've used it for my son at IEPs, as well as for families I've worked with and people I know with disabilities.
I had mentioned this resource once before but their website address has since changed and this is the new one. This is really one of the most useful, helpful websites and it is worth checking out.
I love to share good resources!
Blessings:)
Amy
Saturday, October 2, 2010
October is National Disability Employment Awareness Month (NDEAM)
Hi all,
October is National Disability Employment Awareness Month. (NDEAM)
www.dol.gov/odep/faqs/ndeam.htm
A World In Which People With Disabilities Have Unlimited Employment Opportunities
What is National Disability Employment Awareness Month?
Congress designated each October as National Disability Employment Awareness Month (NDEAM). The Office of Disability Employment Policy has the lead in planning NDEAM activities and materials to increase the public's awareness of the contributions and skills of American workers with disabilities. Various programs carried out throughout the month also highlight the specific employment barriers that still need to be addressed and removed.
This effort to educate the American public about issues related to disability and employment actually began in 1945, when Congress enacted a law declaring the first week in October each year "National Employ the Physically Handicapped Week." In 1962, the word "physically" was removed to acknowledge the employment needs and contributions of individuals with all types of disabilities. In 1988, Congress expanded the week to a month and changed the name to "National Disability Employment Awareness Month."
For more information, a GREAT website is:
www.dol.gov/odep
Blessings:)
Amy
October is National Disability Employment Awareness Month. (NDEAM)
www.dol.gov/odep/faqs/ndeam.htm
A World In Which People With Disabilities Have Unlimited Employment Opportunities
What is National Disability Employment Awareness Month?
Congress designated each October as National Disability Employment Awareness Month (NDEAM). The Office of Disability Employment Policy has the lead in planning NDEAM activities and materials to increase the public's awareness of the contributions and skills of American workers with disabilities. Various programs carried out throughout the month also highlight the specific employment barriers that still need to be addressed and removed.
This effort to educate the American public about issues related to disability and employment actually began in 1945, when Congress enacted a law declaring the first week in October each year "National Employ the Physically Handicapped Week." In 1962, the word "physically" was removed to acknowledge the employment needs and contributions of individuals with all types of disabilities. In 1988, Congress expanded the week to a month and changed the name to "National Disability Employment Awareness Month."
For more information, a GREAT website is:
www.dol.gov/odep
Blessings:)
Amy
Ask A Stupid Question, Get A Stupid Answer
Hi all,
When you have a disability or a family member with a disability, you have tons of "stories" like the one I'm about to tell you. I feel like we have so many, I could write a book. The problem is, I remember some of them, but I really need to write them down because there are SO many! Here is one thing that happened just tonight.
Greg was dropping Nick off at a party tonight with his date to the homecoming dance, before the dance. There were some other parents dropping kids off too and leaving this home. Greg took Nick in, took a couple of pictures, got Nick settled and left. As he was leaving, another parent was also leaving after dropping off her son or daughter. She has a younger child with her. She yells out to Greg, "Is your son handicapped?" Greg kind of smiles and laughs to himself because of course, the word "handicapped", along with the boldness of that out of the blue question kind of caught him off guard. He said, "yes, he has cerebral palsy". She replied, "are you just going to leave him here like that?" Greg of course was a combination of shocked, maybe a little offended as she doesn't even know us or Nick, her ignorance, boldness, and a dozen other things.....and he said (with the INTENTION of being a smart-a__ and rightfully so!), "yeah, I'm going to leave him and just let them (the people in the house) deal with him!" and he got in the car. He said she just kind of looked at him with a look of disbelief. If you ask a STUPID question, expect a STUPID answer! What was this lady thinking? It never ceases to amaze us how ignorant people are about disability. (and in general in this case) As I'm writing this, Greg had gotten a call that Nick and his date are ready to go to the dance after this party, so he is now picking them up in our van, as Nick is using a wheelchair of course, to take them to the dance. Of course, he could have just let them walk or hitch a ride, but we don't roll like that ;) Enough said. (deep breath!)
Blessings:)
Amy
When you have a disability or a family member with a disability, you have tons of "stories" like the one I'm about to tell you. I feel like we have so many, I could write a book. The problem is, I remember some of them, but I really need to write them down because there are SO many! Here is one thing that happened just tonight.
Greg was dropping Nick off at a party tonight with his date to the homecoming dance, before the dance. There were some other parents dropping kids off too and leaving this home. Greg took Nick in, took a couple of pictures, got Nick settled and left. As he was leaving, another parent was also leaving after dropping off her son or daughter. She has a younger child with her. She yells out to Greg, "Is your son handicapped?" Greg kind of smiles and laughs to himself because of course, the word "handicapped", along with the boldness of that out of the blue question kind of caught him off guard. He said, "yes, he has cerebral palsy". She replied, "are you just going to leave him here like that?" Greg of course was a combination of shocked, maybe a little offended as she doesn't even know us or Nick, her ignorance, boldness, and a dozen other things.....and he said (with the INTENTION of being a smart-a__ and rightfully so!), "yeah, I'm going to leave him and just let them (the people in the house) deal with him!" and he got in the car. He said she just kind of looked at him with a look of disbelief. If you ask a STUPID question, expect a STUPID answer! What was this lady thinking? It never ceases to amaze us how ignorant people are about disability. (and in general in this case) As I'm writing this, Greg had gotten a call that Nick and his date are ready to go to the dance after this party, so he is now picking them up in our van, as Nick is using a wheelchair of course, to take them to the dance. Of course, he could have just let them walk or hitch a ride, but we don't roll like that ;) Enough said. (deep breath!)
Blessings:)
Amy
October 2, 2010 update
Hi all,
Tonight is Nick's Homecoming dance, his senior year! We're excited for him and hope he has a great time. You'll have to check out our post from last year, dated October 11, 2009, Nick's first homecoming dance or dance in general. I'd say it was a "family affair" and we're much more "relaxed" this year;) So, we'll post pictures soon.
Nick's enjoying his senior year so far! He has a great schedule and is taking a few classes that he REALLY likes, one is Sports Management and one is Sociology. He's doing VERY well and getting ready for the upcoming wrestling season to start. So far he's just been conditioning/lifting weights for wrestling. Also, I'll post later about this in detail but we're getting ready for some college visits and contacts as applications need to be completed soon. Also, Nick will be completing his driving portion of his driving school soon and I'll post about that. We have a wonderful person from the Bridges to Transition Program who is helping us with getting Nick connected to and ready for work, college, driving, etc. We're so grateful for the help. We knew this would be a busy year and we're trying to enjoy it!
We also received an order form this week for Nick's cap and gown and graduation announcements, which made it VERY REAL and I had quite an evening of reaction and reflection which I'll write about more later.
Isabella is enjoying her dance classes and has started taking the violin, which she is really enjoying. Plus, she is loving the 5th grade. We can see so many changes in her, as we do with both of the kids every year. I think that is really one of the best parts of being a parent. The thing I find most enjoyable being a parent is watching them become these "people" they are becoming, the constant changes and maturing, their personalities developing along the way. I LOVE IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I'm most definitely feeling that time is going by very fast, too fast, and I realize how important it is to enjoy it and take it all in.
Blessings:)
Amy
Tonight is Nick's Homecoming dance, his senior year! We're excited for him and hope he has a great time. You'll have to check out our post from last year, dated October 11, 2009, Nick's first homecoming dance or dance in general. I'd say it was a "family affair" and we're much more "relaxed" this year;) So, we'll post pictures soon.
Nick's enjoying his senior year so far! He has a great schedule and is taking a few classes that he REALLY likes, one is Sports Management and one is Sociology. He's doing VERY well and getting ready for the upcoming wrestling season to start. So far he's just been conditioning/lifting weights for wrestling. Also, I'll post later about this in detail but we're getting ready for some college visits and contacts as applications need to be completed soon. Also, Nick will be completing his driving portion of his driving school soon and I'll post about that. We have a wonderful person from the Bridges to Transition Program who is helping us with getting Nick connected to and ready for work, college, driving, etc. We're so grateful for the help. We knew this would be a busy year and we're trying to enjoy it!
We also received an order form this week for Nick's cap and gown and graduation announcements, which made it VERY REAL and I had quite an evening of reaction and reflection which I'll write about more later.
Isabella is enjoying her dance classes and has started taking the violin, which she is really enjoying. Plus, she is loving the 5th grade. We can see so many changes in her, as we do with both of the kids every year. I think that is really one of the best parts of being a parent. The thing I find most enjoyable being a parent is watching them become these "people" they are becoming, the constant changes and maturing, their personalities developing along the way. I LOVE IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I'm most definitely feeling that time is going by very fast, too fast, and I realize how important it is to enjoy it and take it all in.
Blessings:)
Amy
Josh Blue
Hi all,
This past Thursday night, September 30, 2010, Greg, Nick, Isabella, and I, along with both sets or our parents, attended the Woodlane/Community Employment Services (www.woodlane.us/adultServices.php ) 25th anniversary celebration at Fat Fish Blue/Levis Commons (Perrysburg, OH.). They put on a wonderful celebration, great food, and featured comedians BT and Josh Blue. They were both so funny. We had a GREAT time!
For those of you who don't know, Josh Blue is a man with cerebral palsy, a comedian who won NBC's Last Comic Standing Season Four, a husband and father who lives in Denver, Colorado, and a Paralympic athlete. His web site is www.joshblue.com. He uses his sense of humor to defy stereotypes and encourage others to overcome their preconceived notions of individuals living with disabilities. He is SO funny! His sarcasm and "smart-a__" sense of humor reminds me of Nick's sense of humor. Nick also uses that to deal with his disability, teach others, deal with life in general, and well, it just IS who he is!
Thanks to Woodlane/CES and Josh Blue for a wonderful evening!
Blessings:)
Amy
Monday, September 27, 2010
Rights Gone Wrong: Disability Groups Vs. Gleeks With Disabilities
Hi all-
Here is a great article re: Glee. If you don't know, there has been controversy over the show's using someone without a disability in a role portraying a character with a disability. Personally, I wish more individuals with disabilities would be cast in shows. BUT, personally, we also love Glee and they DO use people with disabilities in some of their episodes (deaf or HOH individuals, Downs syndrome) and they've had MANY episodes with great disability awareness messages. The author of this article makes some good points. I can see both sides of the debate and understand, but all of us in Team Hyndman are "Gleeks". If you haven't watched the show, you can rent the DVD first season, which has some of the best disability awareness episodes. Check it out if you're interested. Below is the link to the article.
Blessings:)
Amy
Rights Gone Wrong: Disability Groups Vs. Gleeks With Disabilities
Here is a great article re: Glee. If you don't know, there has been controversy over the show's using someone without a disability in a role portraying a character with a disability. Personally, I wish more individuals with disabilities would be cast in shows. BUT, personally, we also love Glee and they DO use people with disabilities in some of their episodes (deaf or HOH individuals, Downs syndrome) and they've had MANY episodes with great disability awareness messages. The author of this article makes some good points. I can see both sides of the debate and understand, but all of us in Team Hyndman are "Gleeks". If you haven't watched the show, you can rent the DVD first season, which has some of the best disability awareness episodes. Check it out if you're interested. Below is the link to the article.
Blessings:)
Amy
Rights Gone Wrong: Disability Groups Vs. Gleeks With Disabilities
John Wooden Quote
"Do not let what you cannot do interfere with what you can do."-
John Wooden
"You can't live a perfect day without doing something for someone who will never be able to repay you."-
John Wooden
Hi all-
Two great quotes from basketball Coach John Wooden. The first one is in Nick's senior picture book and I think it is a perfect description of how Nick has approached his life.
Blessings:)
Amy
John Wooden
"You can't live a perfect day without doing something for someone who will never be able to repay you."-
John Wooden
Hi all-
Two great quotes from basketball Coach John Wooden. The first one is in Nick's senior picture book and I think it is a perfect description of how Nick has approached his life.
Blessings:)
Amy
Great Quote
Hi all,
I LOVE a great quote, especially ones that have so much meaning to me. I'll try to post great ones I see from time to time. Do you have any great, inspirational, motivational quotes you'd like to share? If you do, please share them with us!
Blessings:)
Amy
"I always wondered why somebody doesn't do something about that. Then I realized I was somebody." Lily Tomlin
I LOVE a great quote, especially ones that have so much meaning to me. I'll try to post great ones I see from time to time. Do you have any great, inspirational, motivational quotes you'd like to share? If you do, please share them with us!
Blessings:)
Amy
"I always wondered why somebody doesn't do something about that. Then I realized I was somebody." Lily Tomlin
Monday, September 20, 2010
Happy 11th Birthday Isabella Grace Hyndman!
Happy Birthday to our girl! Today is Isabella Grace's 11th Birthday! Happy Birthday Bella:) We're so grateful you were born:) You Rock! We Love You!
Love,
Dad, Mom, Nick
Oreo, Ozzie, and Charger too:)
Love,
Dad, Mom, Nick
Oreo, Ozzie, and Charger too:)
Dad Defends His Daughter With Cerebral Palsy
Hi all,
Below is the link to an article about a Dad who defends his daughter with cerebral palsy against bullies on the bus. I know it may be controversial to say this but this man is my HERO. I say, good for him! I would have wanted to do the same thing. I have to wonder what the parents of these bullies think. Are they proud that they've raised kids who think it is "fun and cool" to bully other people with disabilities, or anyone else for that matter? Are they bullies themselves? I can't imagine. No one is perfect as a parent or a person, BUT if my kids EVER did anything like this, well they wouldn't think of it I would bet, but they wouldn't do it again, believe me. Someone needs to put these bullies in their place. And, what about the school tolerance of it and what about the bus company or school transportation where so much bullying occurs? Well, that would be a whole other blog, couldn't it? So, here it is below.
Blessings:)
Amy
http://digg.com/story/r/dad_defends_daughter_with_cerebral_palsy_against_bullies_on_school_bus_video
http://www.google.com/url?q=http%3A%2F%2Fabcnews.go.com%2FUS%2Fdad-loses-cool-threatens-students-bus%2Fstory%3Fid%3D11660119&sa=D&usg=AFQjCNHMSddKYoAC7s2DGAD4YdXlW0I3Og
Below is the link to an article about a Dad who defends his daughter with cerebral palsy against bullies on the bus. I know it may be controversial to say this but this man is my HERO. I say, good for him! I would have wanted to do the same thing. I have to wonder what the parents of these bullies think. Are they proud that they've raised kids who think it is "fun and cool" to bully other people with disabilities, or anyone else for that matter? Are they bullies themselves? I can't imagine. No one is perfect as a parent or a person, BUT if my kids EVER did anything like this, well they wouldn't think of it I would bet, but they wouldn't do it again, believe me. Someone needs to put these bullies in their place. And, what about the school tolerance of it and what about the bus company or school transportation where so much bullying occurs? Well, that would be a whole other blog, couldn't it? So, here it is below.
Blessings:)
Amy
http://digg.com/story/r/dad_defends_daughter_with_cerebral_palsy_against_bullies_on_school_bus_video
http://www.google.com/url?q=http%3A%2F%2Fabcnews.go.com%2FUS%2Fdad-loses-cool-threatens-students-bus%2Fstory%3Fid%3D11660119&sa=D&usg=AFQjCNHMSddKYoAC7s2DGAD4YdXlW0I3Og
Thursday, September 16, 2010
Mistakes People Make
Hi all,
I found the article below to be helpful/good advice. I found it at another very helpful website, www.wrightslaw.com.
Blessings:)
Amy
Mistakes People Make - Parents
by Robert K. Crabtree, Esq.
Because the stakes are so high, it is difficult for parents of children with special educational needs to advocate calmly and objectively for the educational and related services their children need.
Here are some common mistakes that undermine parents' ability to obtain appropriate services:
1. Viewing the special education process as the moral equivalent of war, fighting that war with a "scorched earth" approach, and letting personal animosity toward administrators and/or teachers distort one's judgment about what is best for the child and what is realistic to accept;
2. The opposite mistake: trusting administrators and teachers too uncritically; assuming that if they are "nice" they are also competent and interested in serving the child's best interest; not questioning slow, or nonexistent progress as long as the child, parent and teacher have a cordial relationship;
3. Taking an "all or nothing" approach: waiting too long before getting good independent advice, then insisting on instant delivery of needed services rather than steady progress toward the right program;
4. Failing to understand that the special education process sometimes requires that the parent educate the child's special education team about the child's disabilities and needs (the school system may not be willfully refusing to meet the child's needs; they may simply not understand those needs);
5. Not trying a program or added services, even on a temporary basis, when they are offered by the school system -- holding out for an alternative program only to have a hearing officer decide the untried program might have worked;
6. Attempting to "micro-manage" the details of a child's life in school; even if parents don't feel things are going well, their efforts to control the child's day usually backfire when the hearing officer concludes that the parents were over-protective and didn't let the school professionals do their job;
7. Focusing on minor, nonprejudicial procedural missteps by the school (e.g., the parent who already knows her rights who says, "Aha! Gotcha! School district forgot to give me the rights brochure!") instead of focusing on the substantial issues in the case;
8. Not consenting to school evaluations;
9. Choosing the wrong independent evaluators: e.g., "hired guns" who only say what the parents want them to say, and have a reputation for doing so; those who will not follow through by observing programs, attending team meetings, etc.; those who do not have training or experience to evaluate a child like yours;
10. Not providing copies of independent evaluations to the school, or not providing them in a timely way;
11. Not responding in a timely way to proposed IEPs;
12. Not documenting issues with the school; not sending letters to confirm agreements with the school or to record important conversations with school personnel.
13. Seeing the school system as a monolith ("All those teachers are incompetent [or wonderful!]"); failing to look carefully at alternatives within the system for this year and at next year's teacher possibilities.
--------------------------------------------------------------------------------
More "Mistakes People Make" Articles by Bob Crabtree
Mistakes People Make: School Districts. What makes parents angry? Parents are angry when school personnel take actions that undermine trust, create a negative climate that destroys peace of mind, and deliver inadequate services to the child. Want to learn more? Read article
Mistakes People Make: Independent Evaluators. To make their case for services or a specific program for their child, parents usually need a competent, credible independent evaluator. Serious mistakes by evaluators can make undermine their credibility or render their opinions powerless. To learn about mistakes independent evaluators should try to avoid, read this article.
Mistakes People Make: Advocates. Because the non-lawyer advocate plays an extremely important role in the special education process, advocates must be mindful of the power of their role and the trust parents place in them. The more serious mistakes advocates may make are generally ones of excess . . . Read article
--------------------------------------------------------------------------------
Other Articles by Bob Crabtree
Discipline: Suspension, Expulsions and IEPs. Read this article by parent attorney Robert Crabtree to learn about functional behavioral assessments, behavior intervention plans, long-term suspensions and expulsions, the child's rights, and what parents can do to protect these rights. Learn how to request a behavior assessment, an expedited hearing, and how to invoke "stay put."
The Paper Chase: Managing Your Child's Documents. "If you have kids with special educational needs, you can be overwhelmed with paperwork in no time at all . . ."
--------------------------------------------------------------------------------
Meet Robert Crabtree
Bob Crabtree is a partner at Kotin, Crabtree, and Strong, LLP, a general practice law firm in Boston, MA. Among other areas of practice, Bob concentrates in special education and disability law. This article was originally published by the Family Education site at www.familyeducation.com
Contact Info:
Robert K. Crabtree
Kotin, Crabtree & Strong, LLP
One Bowdoin Square
Boston, MA 02114-2925
Phone: 617/227-7031
Facsimile: 617/367-2988
Email: rcrabtree@kcslegal.com
Website: www.kcslegal.com
Copyright © 1999-2010, Peter W. D. Wright and Pamela Darr Wright. All rights reserved. Contact Us
I found the article below to be helpful/good advice. I found it at another very helpful website, www.wrightslaw.com.
Blessings:)
Amy
Mistakes People Make - Parents
by Robert K. Crabtree, Esq.
Because the stakes are so high, it is difficult for parents of children with special educational needs to advocate calmly and objectively for the educational and related services their children need.
Here are some common mistakes that undermine parents' ability to obtain appropriate services:
1. Viewing the special education process as the moral equivalent of war, fighting that war with a "scorched earth" approach, and letting personal animosity toward administrators and/or teachers distort one's judgment about what is best for the child and what is realistic to accept;
2. The opposite mistake: trusting administrators and teachers too uncritically; assuming that if they are "nice" they are also competent and interested in serving the child's best interest; not questioning slow, or nonexistent progress as long as the child, parent and teacher have a cordial relationship;
3. Taking an "all or nothing" approach: waiting too long before getting good independent advice, then insisting on instant delivery of needed services rather than steady progress toward the right program;
4. Failing to understand that the special education process sometimes requires that the parent educate the child's special education team about the child's disabilities and needs (the school system may not be willfully refusing to meet the child's needs; they may simply not understand those needs);
5. Not trying a program or added services, even on a temporary basis, when they are offered by the school system -- holding out for an alternative program only to have a hearing officer decide the untried program might have worked;
6. Attempting to "micro-manage" the details of a child's life in school; even if parents don't feel things are going well, their efforts to control the child's day usually backfire when the hearing officer concludes that the parents were over-protective and didn't let the school professionals do their job;
7. Focusing on minor, nonprejudicial procedural missteps by the school (e.g., the parent who already knows her rights who says, "Aha! Gotcha! School district forgot to give me the rights brochure!") instead of focusing on the substantial issues in the case;
8. Not consenting to school evaluations;
9. Choosing the wrong independent evaluators: e.g., "hired guns" who only say what the parents want them to say, and have a reputation for doing so; those who will not follow through by observing programs, attending team meetings, etc.; those who do not have training or experience to evaluate a child like yours;
10. Not providing copies of independent evaluations to the school, or not providing them in a timely way;
11. Not responding in a timely way to proposed IEPs;
12. Not documenting issues with the school; not sending letters to confirm agreements with the school or to record important conversations with school personnel.
13. Seeing the school system as a monolith ("All those teachers are incompetent [or wonderful!]"); failing to look carefully at alternatives within the system for this year and at next year's teacher possibilities.
--------------------------------------------------------------------------------
More "Mistakes People Make" Articles by Bob Crabtree
Mistakes People Make: School Districts. What makes parents angry? Parents are angry when school personnel take actions that undermine trust, create a negative climate that destroys peace of mind, and deliver inadequate services to the child. Want to learn more? Read article
Mistakes People Make: Independent Evaluators. To make their case for services or a specific program for their child, parents usually need a competent, credible independent evaluator. Serious mistakes by evaluators can make undermine their credibility or render their opinions powerless. To learn about mistakes independent evaluators should try to avoid, read this article.
Mistakes People Make: Advocates. Because the non-lawyer advocate plays an extremely important role in the special education process, advocates must be mindful of the power of their role and the trust parents place in them. The more serious mistakes advocates may make are generally ones of excess . . . Read article
--------------------------------------------------------------------------------
Other Articles by Bob Crabtree
Discipline: Suspension, Expulsions and IEPs. Read this article by parent attorney Robert Crabtree to learn about functional behavioral assessments, behavior intervention plans, long-term suspensions and expulsions, the child's rights, and what parents can do to protect these rights. Learn how to request a behavior assessment, an expedited hearing, and how to invoke "stay put."
The Paper Chase: Managing Your Child's Documents. "If you have kids with special educational needs, you can be overwhelmed with paperwork in no time at all . . ."
--------------------------------------------------------------------------------
Meet Robert Crabtree
Bob Crabtree is a partner at Kotin, Crabtree, and Strong, LLP, a general practice law firm in Boston, MA. Among other areas of practice, Bob concentrates in special education and disability law. This article was originally published by the Family Education site at www.familyeducation.com
Contact Info:
Robert K. Crabtree
Kotin, Crabtree & Strong, LLP
One Bowdoin Square
Boston, MA 02114-2925
Phone: 617/227-7031
Facsimile: 617/367-2988
Email: rcrabtree@kcslegal.com
Website: www.kcslegal.com
Copyright © 1999-2010, Peter W. D. Wright and Pamela Darr Wright. All rights reserved. Contact Us
Wednesday, September 15, 2010
Nick's Senior Pics
Hi all,I am attaching some of Nick's senior pictures. He had them taken in August. Some of his pics are with his service dog, Charger, from Assistance Dogs of America, Inc. Also, some are with Isabella. We love them! Karen McKenzie did a GREAT job taking them! Check out her website at http://www.kmseniors.com/. She is going to be posting Nick's pics up for friends/family that want to order some (we are sending some wallets to friends and family soon!) at www.kmseniors.com/Nick.
There are about 90 pics so there are so many more great ones in addition to the pics I'm putting on here. If you're interested in seeing them, check out the link above or go to our group on Facebook called "Cerebral Palsy Family" and I put the entire album on there. We'd love it if you'd like to follow us on Facebook! By the way, I love all of them, but the one of Charger and Nick looking into each others eyes above, shows the bond, love/devotion between them. We had fun getting Charger the sunglasses and bow-tie too:)
Blessings:)
Amy
Friday, September 10, 2010
Congratulations Maddie!
Hi all,
Taking both kids to the doctor today but wanted to get a quick note here in between appts.
We want to congratulate our niece, Madeline Rick (Maddie),who has been cast as a "little soldier" and "Big Angel A" in the Toledo Ballet's production of the Nutcracker!
She's very excited and we're so proud of her. She's a gifted ballet dancer:) The Nutcracker will be playing on Saturday, December 11th at 2pm and 7pm, and Sunday, December 12th at 2pm! (http://www.toledoballet.net/ ). Isabella and I REALLY enjoyed it last year and it will be even better for us this year with Maddie in it. If you live locally, it is a wonderful production and a great holiday treat!
Blessings:)
Amy
Taking both kids to the doctor today but wanted to get a quick note here in between appts.
We want to congratulate our niece, Madeline Rick (Maddie),who has been cast as a "little soldier" and "Big Angel A" in the Toledo Ballet's production of the Nutcracker!
She's very excited and we're so proud of her. She's a gifted ballet dancer:) The Nutcracker will be playing on Saturday, December 11th at 2pm and 7pm, and Sunday, December 12th at 2pm! (http://www.toledoballet.net/ ). Isabella and I REALLY enjoyed it last year and it will be even better for us this year with Maddie in it. If you live locally, it is a wonderful production and a great holiday treat!
Blessings:)
Amy
Thursday, September 9, 2010
Lighted Wheelchair Casters
Hi all,
We have been ordering these "light up" wheels for Nick's wheelchair, front wheels (or casters) for years. People stop us and ask us about them everywhere. They're so cool. I've seen adults with them as well as kids. They light up in three primary colors and are $29 a pair right now at Sportaid. www.sportaid.com. (3 " or 4 " lighted wheelchair casters) Check them out if you have someone in a chair, their cool. Nick loves them.
Blessings:)
Amy
We have been ordering these "light up" wheels for Nick's wheelchair, front wheels (or casters) for years. People stop us and ask us about them everywhere. They're so cool. I've seen adults with them as well as kids. They light up in three primary colors and are $29 a pair right now at Sportaid. www.sportaid.com. (3 " or 4 " lighted wheelchair casters) Check them out if you have someone in a chair, their cool. Nick loves them.
Blessings:)
Amy
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