Hi all,
This book review on this new book was on Cerebral Palsy Family on Facebook and I wanted to share it. I can't wait to get the book and read it from www.amazon.com. Here is the info:
"Nancy Douglas
Book Review: "I absolutely loved this book and recommend it not only to parents of children with disabilities, but to all who would like to know how to remain faithful to God through tremendous adversity.
Nancy gives the reader a brutally honest glimpse of her life and her faith journey. I read it in an afternoon. You will too!" - Laura, Lafayette, California (5 out of 5 stars)
As low as $12.95
http://www.amazon.com/Freedom-Nancy-Douglas/dp/0615188222/ref=ntt_at_ep_dpt_1
Freedom
www.amazon.com
In the pages of Freedom, Nancy Douglas candidly shares the pain, grief, and trials of having a disabled child. From the initial storm of discovering her daughter was Autistic, deaf, and Failure to Thrive, to the agony of knowing she would never receive physically healing, her compelling and hone.....
Amy Parks-Jagel Hyndman thank you Nancy! I can't wait to read it!"
This is where the message ended but I'd go to Amazon.com to read the rest!
Blessings:)
Amy
Friday, June 24, 2011
Thursday, June 23, 2011
Cerebral Palsy Fundraiser Info.
Hi all,
The message below was posted to Cerebral Palsy Family on Facebook by Chuck Rogers on 6/23 @ 1:33 pm. I thought I'd share it in case anyone is interested and please pass this information on to anyone who may be interested. Thank you! Here it is:
"Just a quick reminder that next week starts the Midnight Moonlight Ranch Cerebral Palsy fund raiser concert with free camping and fireworks in Rogers /Lisbon Ohio june 30th till July 5th in honor of Rain Marie. For ticket or campground info please google Midnight moonlight ranch or call 216-702-7889 thanks for your support"
Blessings:)
Amy
The message below was posted to Cerebral Palsy Family on Facebook by Chuck Rogers on 6/23 @ 1:33 pm. I thought I'd share it in case anyone is interested and please pass this information on to anyone who may be interested. Thank you! Here it is:
"Just a quick reminder that next week starts the Midnight Moonlight Ranch Cerebral Palsy fund raiser concert with free camping and fireworks in Rogers /Lisbon Ohio june 30th till July 5th in honor of Rain Marie. For ticket or campground info please google Midnight moonlight ranch or call 216-702-7889 thanks for your support"
Blessings:)
Amy
Wednesday, June 8, 2011
This And That
Hi all! I posted a couple of pictures above of Nick's new power wheelchair. This chair came in RECORD time! We ordered it only in March and we already got it! That has never happened to us before. It has taken about 6 months in the past to get chairs! National Seating and Mobility did a great job! Thank you! So, watch out! The only thing is, it is so big and heavy, it has taken two men to get it in and out of our van. I can't even do it with Greg's help, so at this time, Nick will not be able to use it unless Greg and another strong person is available to get it in and out of the van. We purchased a portable ramps, but it is so unsteady and not very easy to get it to work as our van roof is not high enough or the floor is not low enough, so it was just a reminder to us how important it is for us to get Nick a van with a lift before school starts or we don't know how he'll be able to get to and from school. We may have to take him and stay with him to push him to and from classes until we get the lift van. That's our first thought, but we'll see how things pan out and will keep you updated!
We got this chair with college in mind, thinking Nick would be able to get around on campus much easier and not have to have someone push him, and it would be faster so he could get to classes, etc. on time. Most people (and their families) who are wheelchair users know you take extra time to load, unload everywhere you go and it just takes more time to get around in general most of the time! We thought this chair would help. Even though Nick can propel a chair on his own or be pushed, we had to think of what was the most important thing in this case, Nick being independent and pushing himself or have someone push him (in which case we'd need to make sure someone was always with him, which is not realistic) OR getting to class easily and on time and concentrating his energies on THAT. So, we chose the latter! Nick understands this concept. I mean, he understands that sometimes, even though he CAN do man things without help, it usually is a struggle, takes him much longer, and takes a lot of physical energy, so for him to "keep up" the pace with others, he has to use help at times so he can live the life he wants to live. We had to address this with him when he was very young because he wanted to do EVERYTHING on his own and was so determined, yet he needed help at school, for example, to take notes and write for him (a scribe) because it took him a lot of time and energy and he couldn't keep up with the classes pace. As he got older and matured, he accepted this and understood it was not a reflection on his abilities at all. Most people don't know that in Nick's case (and for other individuals with physical disabilities), it takes 2-3 times as much energy to do anything we do normally. We were told this by a specialist when Nick was very young. It's true too. So, to get out of bed, hold his head up straight all day, sit up straight, anything at all, it takes a lot more effort and energy. When Nick gets home from school for example, there have been many days when he literally can't hold his head up and is just exhausted. (more days than not) This is just the "norm" for us. We know this about him, are used to it, know how to deal with it, etc. I think, however, that most people don't even realize this when they look at Nick because he's so capable and doesn't complain and is just out there living life to the fullest, but it takes a lot out of him. He wouldn't want things any other way though because he wants to live a full, active, fun life. So, we do what we can to help him reach those goals! Part of that for me is trying to make people "aware" and understand Nick and disability more. I love educating people and sharing information because I think when we understand and learn about people, there are positive outcomes for everyone.
I didn't mention yet, we were able to get American Idol Live concert tickets in Detroit in August. I was on the computer as they went on sale and was able to get great seats! We love American Idol and have watched it as a family most seasons for years but we all thought this year was the BEST season ever! We LOVED the new judges (not that we didn't like Simon, we did, but these judges just gave it new life!) and the talent was better overall than any year we can remember. So,we're so excited to go as a family to see it Live!
We are counting down the days not to our vacation and are looking forward to Hilton Head and Savannah, the beach, the pool, being with our parents and family, just "relaxing" in our beach house and going to Paula Deen's restaurant, which is something my Mom and Greg's Mom really wanted to do so we're excited to do it when we visit Savannah for the day.
Lastly, we are missing Charger so much although he's in very good hands! I've written before about his weight problem. He can't be certified (he's had a temporary certification) until he loses the weight and we have not done a very good job at making that happen for a lot of reasons (none of them excuses but just our circumstances). So, we did not want all of the hard work and time/money put into training Charger for two years to go to waste and we want him to be able to be out with and help Nick, still work of course. We got a call from the client services director at ADAI and they offered to help us and we are so grateful. So, we jokingly call it "fat camp" (in an effort to laugh instead of cry). He's out at ADAI working with their trained staff and other dogs who are losing weight as well, under supervision, to safely lose the weight. We are so grateful and appreciative and know he's in great hands and being cared for really well! BUT, we MISS him so much it hurts! Believe me, we know we don't want to go through this again so we have to make sure he gets enough exercise when he comes home in a few months. We'll be able to and will visit him. Nick and Greg and taking it very well and "rationally". Isabella and I have been crying a lot when we think of him, more emotional, and we don't want him to think we abandoned him. Well, this is a real gift and we're grateful! Charger IS a part of our family. He's an excellent and smart working dog AND a big "baby" when he's "off the clock" and just hanging out with the family and our other two dogs. All four of us could use more activity and exercise so we hope to step it up for all of us!
That's the latest in the Hyndman home and we'll be writing about our vacation and college planning more after our vacation.
Oh, one more important thing I want bring up! Regarding my last post, I received a phone call from the Superintendent of the program I mentioned in my post and she explained how the van comment was brought up, why it was asked about, and the intention behind it, which was only good intention and was a great relief to me. I am grateful she reached out to me and explained it and it made a lot of sense. They do really want to make sure Nick gets what he needs and if they are not able to fund it, they want to figure out who can help us with this. They understand the expense of a modified vehicle and Nick's need for it! So, I wanted to say it had a good ending! Good communication is so important which is what this situation reminded me!:-)
Blessings:)
Amy
Thursday, June 2, 2011
Tuned In and Tapped Out
Hi all,
I'll start by saying this post is being written out of a bit of frustration but not too much ;-) To begin, I'm grateful that anyone at all reads our blog and we hope to reach more people. The fact that anyone cares what we have to say amazes me. My reasons for writing this blog have never changed and I know I've talked about them in previous posts, so I won't write all of that again. So,I don't regret any outcomes or repercussions of it because I know when we decided to share our story/blog, people have the right to form opinions (of course!) and make judgements. That happens I know, and it may momentarily frustrate us at times, but it's OK! Everyone has a right to their opinions just as we do and we are blogging for only good reasons.
It was shared with me that administrators of one of the programs we are seeking services from for Nick read our blog, which is great! I want to clarify however, that we didn't say ( I didn't write) that any organization was going to "buy us a van" or pay for all of our expenses or anything else. We just wrote about the fact we need a wheelchair lift van for Nick for Nick to be able to go to college and use his power chair ANYWHERE, not just at college, and we wrote about the quote we got from one vendor. I said that the Bridges To Transition Program is helping us because we were told that, which doesn't mean they will pay for everything. That is not our expectation. I want to be able to write about what is happening with Nick and a large part of that is the services he receives and all of the steps we have to take to get what he needs. Over the last 17 1/2 years, we've spent A LOT of time, effort, and our own money to make sure Nick has what he needs.
After a family like ours gets to the stage we are at, where Nick is going to be 18 this year, at least for us (I'll speak for us!), we are TAPPED OUT and we need help. We have no more resources and as I've had to be off work often to be available for Nick, we don't always have two incomes in our family. (I've worked off and on sporadically as our family situation permits it and depending on Nick's needs!) We've been told we should just take care of things on our own at times. We HAVE done that MANY times. We've used all of our resources, money, and lots of our time to purchase things insurance does not cover, go to therapies, take time off work for therapy, surgery, and we've gotten lots of equipment. So, we ARE going to seek whatever help Nick qualifies for to pay for his college, van with a lift, whatever else he needs. We aren't asking for anything he doesn't qualify for. Greg and I pay our taxes like everyone else and we've done things pretty much on our own for 17 1/2 years. ( We haven't had a lot of help other than family resources from our local board of dd. That's it!) We don't feel guilty for asking for help and it doesn't mean we don't care for Nick well and it doesn't mean we haven't spent years doing things on our own. We have. We are tapped out! We're still great parents. We'll always be a part of Nick's life, involved, here when he needs us, and we'll always do what we can for him and Isabella.
So, if I could say one thing right now to readers of our blog, I'd say, you may have a right to judge us and say things about us but we don't appreciate it. If anyone has any concerns, questions, opinions, we'd be happy to sit down with you and discuss things face to face. Thank you for tuning in and I hope you continue to do so! You may find out we're good people and a great family.
Blessings :-)
Amy
I'll start by saying this post is being written out of a bit of frustration but not too much ;-) To begin, I'm grateful that anyone at all reads our blog and we hope to reach more people. The fact that anyone cares what we have to say amazes me. My reasons for writing this blog have never changed and I know I've talked about them in previous posts, so I won't write all of that again. So,I don't regret any outcomes or repercussions of it because I know when we decided to share our story/blog, people have the right to form opinions (of course!) and make judgements. That happens I know, and it may momentarily frustrate us at times, but it's OK! Everyone has a right to their opinions just as we do and we are blogging for only good reasons.
It was shared with me that administrators of one of the programs we are seeking services from for Nick read our blog, which is great! I want to clarify however, that we didn't say ( I didn't write) that any organization was going to "buy us a van" or pay for all of our expenses or anything else. We just wrote about the fact we need a wheelchair lift van for Nick for Nick to be able to go to college and use his power chair ANYWHERE, not just at college, and we wrote about the quote we got from one vendor. I said that the Bridges To Transition Program is helping us because we were told that, which doesn't mean they will pay for everything. That is not our expectation. I want to be able to write about what is happening with Nick and a large part of that is the services he receives and all of the steps we have to take to get what he needs. Over the last 17 1/2 years, we've spent A LOT of time, effort, and our own money to make sure Nick has what he needs.
After a family like ours gets to the stage we are at, where Nick is going to be 18 this year, at least for us (I'll speak for us!), we are TAPPED OUT and we need help. We have no more resources and as I've had to be off work often to be available for Nick, we don't always have two incomes in our family. (I've worked off and on sporadically as our family situation permits it and depending on Nick's needs!) We've been told we should just take care of things on our own at times. We HAVE done that MANY times. We've used all of our resources, money, and lots of our time to purchase things insurance does not cover, go to therapies, take time off work for therapy, surgery, and we've gotten lots of equipment. So, we ARE going to seek whatever help Nick qualifies for to pay for his college, van with a lift, whatever else he needs. We aren't asking for anything he doesn't qualify for. Greg and I pay our taxes like everyone else and we've done things pretty much on our own for 17 1/2 years. ( We haven't had a lot of help other than family resources from our local board of dd. That's it!) We don't feel guilty for asking for help and it doesn't mean we don't care for Nick well and it doesn't mean we haven't spent years doing things on our own. We have. We are tapped out! We're still great parents. We'll always be a part of Nick's life, involved, here when he needs us, and we'll always do what we can for him and Isabella.
So, if I could say one thing right now to readers of our blog, I'd say, you may have a right to judge us and say things about us but we don't appreciate it. If anyone has any concerns, questions, opinions, we'd be happy to sit down with you and discuss things face to face. Thank you for tuning in and I hope you continue to do so! You may find out we're good people and a great family.
Blessings :-)
Amy
Graduation and Fifth Grade Recognition
Hi all,
I have so much I want to write about but I wanted to write about Nick's graduation and Isabella's Fifth Grade Recognition (graduation from elementary school into Jr. High) in a separate post because these events have been the highlight of our month here in our family.
Nick's graduation from Perrysburg High School was Sunday, the same day as Greg's birthday. It was a beautiful ceremony really, great speeches, etc. at The Stranahan. Nick walked (not rolled) hand in hand with another student down the aisle and on to the stage. I didn't "bawl" or cry my eyes out, I was really just so excited and happy for Nick. I did, however, get a little choked up when I saw him enter the theatre, standing up and walking, and hearing pomp and circumstance, yes, then I cried a happy cry! Then Nick walked across the stage to accept his diploma and the audience was asked not to clap or yell out so that everyone could hear their name, have their moment, etc. When Nick started walking, someone ( I was told by someone later, it was the students) started clapping and Nick got quite an ovation from everyone. It was a huge shock and very touching. We had 20 people there for Nick. Afterwards, we had the nicest dinner with our close family at Mancy's Italian and we celebrated Nick's graduation and Greg's birthday. It was really just a perfect day. Nick and Bella ended up conning PaPa and NaNa Jagel into spending the night at their house with their cousins and the next morning, Memorial Day, they attended a memorial ceremony at the cemetery where our Gran and Go-Go are buried and they helped with planting and weeding, cleaning up the grave area and Bella and our niece Maddie helped our Uncle Frank and Aunt Marcia with their family grave sites too while they were there. Greg and I thought that was very important and special for the kids to experience.
Yesterday, Isabella had her Fifth grade recognition ceremony and little class party afterwards. She received six awards and a letter from President Obama, which is her favorite I think. We could tell she felt good about that and it meant a lot to her. They also had "silly awards" in their class for which the class voted and Isabella got "best dancer", which was cute. Afterwards they had cupcakes, cookies, signed yearbooks, etc. Tomorrow, Friday, is their last day and they are visiting the Jr. High for the day and having lunch there. Hard to believe she'll be in Jr. High next year already!
So,Greg and I are of course really proud of and happy for Nick and Isabella. It's still really "sinking in" and we're still going over Sunday in our minds trying to process and remember every detail. I think that's because it was a lot of work for Nick, and to be truthful, for us too, although we wouldn't change that and it was all worth it. I keep remembering the meetings in which people questioned if/when this day would happen and if Nick would go to college. I know we have a lot of details to work on and figure out this summer to get Nick started in college, but we know it will happen. 100%. No doubt.
These events were the highlight of our week, month, and year I'd say! Yeah Nick and Bella! :-)
Blessings:)
Amy
I have so much I want to write about but I wanted to write about Nick's graduation and Isabella's Fifth Grade Recognition (graduation from elementary school into Jr. High) in a separate post because these events have been the highlight of our month here in our family.
Nick's graduation from Perrysburg High School was Sunday, the same day as Greg's birthday. It was a beautiful ceremony really, great speeches, etc. at The Stranahan. Nick walked (not rolled) hand in hand with another student down the aisle and on to the stage. I didn't "bawl" or cry my eyes out, I was really just so excited and happy for Nick. I did, however, get a little choked up when I saw him enter the theatre, standing up and walking, and hearing pomp and circumstance, yes, then I cried a happy cry! Then Nick walked across the stage to accept his diploma and the audience was asked not to clap or yell out so that everyone could hear their name, have their moment, etc. When Nick started walking, someone ( I was told by someone later, it was the students) started clapping and Nick got quite an ovation from everyone. It was a huge shock and very touching. We had 20 people there for Nick. Afterwards, we had the nicest dinner with our close family at Mancy's Italian and we celebrated Nick's graduation and Greg's birthday. It was really just a perfect day. Nick and Bella ended up conning PaPa and NaNa Jagel into spending the night at their house with their cousins and the next morning, Memorial Day, they attended a memorial ceremony at the cemetery where our Gran and Go-Go are buried and they helped with planting and weeding, cleaning up the grave area and Bella and our niece Maddie helped our Uncle Frank and Aunt Marcia with their family grave sites too while they were there. Greg and I thought that was very important and special for the kids to experience.
Yesterday, Isabella had her Fifth grade recognition ceremony and little class party afterwards. She received six awards and a letter from President Obama, which is her favorite I think. We could tell she felt good about that and it meant a lot to her. They also had "silly awards" in their class for which the class voted and Isabella got "best dancer", which was cute. Afterwards they had cupcakes, cookies, signed yearbooks, etc. Tomorrow, Friday, is their last day and they are visiting the Jr. High for the day and having lunch there. Hard to believe she'll be in Jr. High next year already!
So,Greg and I are of course really proud of and happy for Nick and Isabella. It's still really "sinking in" and we're still going over Sunday in our minds trying to process and remember every detail. I think that's because it was a lot of work for Nick, and to be truthful, for us too, although we wouldn't change that and it was all worth it. I keep remembering the meetings in which people questioned if/when this day would happen and if Nick would go to college. I know we have a lot of details to work on and figure out this summer to get Nick started in college, but we know it will happen. 100%. No doubt.
These events were the highlight of our week, month, and year I'd say! Yeah Nick and Bella! :-)
Blessings:)
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