Cerebral Palsy Family

Time for Reflection

2013-09-24T19:56:00.000-04:00

Hi all,

My last personal post was back in June! I took the summer to spend a lot of time with Greg and the kids, we took a wonderful family vacation, and I spent a lot of time reflecting.

Last summer I was in the hospital, almost didn't make it at one point, came home from the hospital still very sick and it's taken me the past year to totally get rid of the infection in my body and although I'm infection free and doing much better, I am far from 100% yet! Last summer was hard on the family and they've spent the last year taking care of me. So, Greg had almost the entire month of July off from work and we went to Florida for a 2 1/2 weeks. We first spent a couple of days in Tampa and visited the Florida Aquarium and recovered from the drive down. Then we went to the Gulf coast and rented a BEAUTIFUL three story town home on Anna Maria Island, Florida on Bradenton Beach. (http://www.annamariaislandchamber.org to check out info, about this beautiful island!) You can see pics and info. of the town home we rented at http://www.vrbo.com/434635#overview, It was PERFECT for us because it had an elevator which Nick could use from the garage to all three floors in his wheelchair and we also used it to get our luggage up to the third floor bedrooms and bathrooms and laundry room and the groceries up to the second floor. One of the two pools at the Bradenton Beach Club (where the town home was) was directly across the street from out town home and we used the pool and hot tub daily after the beaches. About a three minute walk to the right led us to a gazebo on Tampa Bay which we loved and about the same distance to the right was the gate to the private beach and another pool right on the Gulf. The island is only about 7 miles wide and where our town home was, it was about two blocks wide. It is a barrier island between Tampa and Sarasota, so you are covered on all sides by water, so even though it was July in Florida, we NEVER got too hot, and we are NOT hot weather people believe me! There was always a breeze and it would rain about 30 minutes a day, usually in the afternoons, which cooled the place off even more. We visited all of the 7 beaches on the island, and spent full days at about four of them, going back to coquina beach the most, our favorite, and found several we liked a lot. We used Nick's beach wheelchair every day, which is why we always drive down and pull a trailer behind the van with Nick's power chair, beach wheelchair, manual chair for when we go places with just the van, and all of our luggage. Truthfully, we LOVE the drive! Because I was not up to doing much walking, we spent every day at the beach, then the pool, going to the shops and great local restaurants (no fast food on the island!), went to three movies at night, went to a GREAT boat ride on the bay and saw dolphins, sting and manta rays, got to get some shells on a sand bar in the middle of the bay with the crabs, it was AWESOME! We also went out to the private beach at night was listened to the waves, etc. We tried shark (tasted like chicken) and Isabella tried lots of other seafood local to the area. So, it sounds like we were very busy but we actually spent most of our time on the beach and in the water most of the days. It was very relaxing actually! We cannot wait to go back there someday and if/when we do, we want to stay in the exact same townhouse. We were able to cook some great meal there too! We needed the family time and it was really over due.

Nick turned 20 on August 18th and started his third year of college at UT. He is still majoring in business and minoring I disability studies. I can't believe he is 20! He started wheelchair football again this month. Isabella turned 14 on September 20th and started 8th grade. I can't believe she'll be in high school next year! She is in band, choir, and on student council.

One thing that has been on our mind is my Mom and Dad, NaNa and PaPa Jagel. My Dad is still in dialysis and my Mom has spent the past year trying to be cleared to donate a kidney to my Dad. Just before our trip, my Mom had to have surgery to remove pre-cancerous tumors and it went well and she's had to get off all of her medications for health issues she has and has undergone every physical and test you can imagine to be able to donate a kidney to my Dad. My Dad turns 73 in November and they don't usually do transplants on people after that age, so we are anxious for it to happen and are awaiting final approval from the transplant team. We have a family meeting this week at the hospital, Henry Ford Hospital in Detroit, Mi. We expect to hear something soon. As both of my parents are going to have surgery, it is stressful and we are of course worried but my Mom has her heart set on doing this and dialysis is really taking a toll on my Dad. From what my Mom said, they will need someone to be with them to help them 24/7 for about 4 weeks, so we will need to take turns with family members and Isabella really wants to help every weekend too.

So, as I mentioned I've been reflecting a lot on my own health, getting back to being able to function normally again which I am not yet ( I have some good days and a lot of bad days in a lot of pain and in bed), planning to help out and be there for my Mom and Dad as much as possible in the coming months, wanting to get back to "active" parenting again with the kids. We've just been in survival mode for much of the past year and I want to start being proactive and thinking ahead a bit, but still living in the moment with them. One thing I've learned is that all you really have is this very minute and all the planning in the world can be a nice idea but anything can change your plans at any minute and I'm really OK with that now. Once I get to the point physically where I can function through entire days again, I have to figure out what I am going to do with myself (work, family, etc.). Finally, I have been thinking about THIS BLOG!!!!!!

I have felt like I haven't had much to share and contribute the past year or two because of everything going on with my health and this has zapped me and for a long time, I was really "down" and not feeling like being online or blogging or anything. I've been wondering if anyone reads the blog, if I have anything new of value to share, etc. I love having a "record" of what's happened with Team Hyndman over the past several years. I also love to share good information that maybe someone will relate to or be able to use. So, I am going to keep trying to do this blogging thing and as I continue to get myself better, I am going to share the things Nick is going through and how these issues related to his disability affect him and our family, as well as information about our family. A great deal of it has already been shared but we're still here and things are still going on and I will get to a point eventually where I will have the energy to be a bit more proactive. For example, some of the things that are still REAL and ongoing issues for Nick include isolation and social issues, wanting to date and meet someone to share his life with, how family and friends are still there for him or not as their lives change and move on, Nick's need to become more independent in some areas still and our role in that, etc. I mean, Nick is in college and doing well but his life is still very lonely and isolated in many ways. He can be lonely even in a room full of people if he has no meaningful relationship with people. It's difficult to describe so I hope this makes sense. Also, I don't think Nick likes it when I talk about these things at times because it's like rubbing salt in a very old and ongoing wound. What can we as his family do to help him and how much do we do that? Well, I have some answers but not all of them. All that has happened has also had a great effect on Isabella as well. What many don't know is that she has a lot of OCD symptoms and has been struggling with a lot too and we are trying to figure out the best way to help her too. She has had a lot of responsibility for a girl her age with helping with Nick physically all these years, and helping out at home and with me a lot the past few years, cooking, taking care of me, cleaning. It's a lot for a girl her age and I wish I could change it but it happened. She is ALWAYS thinking of others in her family, friends, wanting to help animals and others, and I just think she needs to focus on herself more! She has some wonderful qualities such as kindness, helpfulness, empathy, caring, but it's been taking a toll on her and we want her to focus on herself a bit more. So, when I talk about reflecting over the summer, all of these things are what I'm referring to and I hope to find the strength and words to blog about them at a later time.

Please keep my parents and our family in your prayers! We would appreciate that very much!

Blessings:-)
Amy

Reflections On Childhood Disability

2013-09-09T18:25:00.000-04:00

http://cpfamilynetwork.org/blogs/a-letter-to-my-10-year-old-self

Toledo Crash Video Made By Chris Clarke on YouTube

2013-05-21T19:47:00.001-04:00

Hi all,

OK, I am getting carried away with the videos, I know. I had to post this one, I love it. Turns out, if I'd ever taken the time to look on You Tube, there are a BUNCH of videos of The Toledo Crash posted by Chris Clarke, one of Nick's team mates.

Blessings:-)
Amy

Another One! Toledo Crash's Practice on 3/13/13

2013-05-21T19:40:00.001-04:00

Hi all,
Found ANOTHER video I hadn't viewed of The Toledo Crash's 3/13/13 Football Practice. Nick's in the chair with white (and black of course) wheels and a dark gray shirt and khaki pants.
Blessings:-)
Amy

2012 Toledo Crash VS. Toledo Rockets

2013-05-21T19:35:00.001-04:00

Hi all,

As I was looking for the April 21, 2013 game video / news piece to post, I found this 2012 video that I personally had never viewed before!

Blessings:-)
Amy

Video of Nick-April 21st game Toledo Crash VS. Toledo Rockets

2013-05-21T19:31:00.001-04:00

Nick and Charger doing The Harlem Shake

2013-05-21T19:26:00.001-04:00

We're Back!

2013-05-09T20:58:00.001-04:00

Hi all,

I don't even know where to start as it has been so long since my past post! Thank you for anyone still reading this for your patience! As you may know if you've read my previous post, I've been ill this past year (actually before that even) and if I am going to be totally honest, it has really been a horrible year with my recovery. Hey, I want to be truthful and not just "put a socially acceptable mask" on what I write. I've always done that in a sense, at least in my personal life, "put a positive face" on (for lots of reasons) and tried to hide the truth about the tough stuff or keep it to myself and with all that has happened, I just have no desire to do that anymore. I want to continue to keep a positive attitude as much as possible, but I'm human. So, here is the update. I am doing a lot better but still working on my recovery. I still have a lot to do physically. I will be on my antibiotics for the rest of this month and then off of them for the first time in a year and have to get blood work every three weeks until the end of the year. I will probably at some time need another back surgery but I hope not anytime soon. Pain-wise, I am in constant pain between my back and Fibromyalgia and the only way my back pain will improve will probably be with surgery but it is not a 100% guarantee per my neurosurgeon and so I am going to try physical therapy and acupuncture which I am starting soon. I still have open wounds on my feet from Hilton Head (June 2011) burns on the beach on my feet, so that has kept me from doing the PT and more before now as well as pain and side effects from meds. I am weaning off of other meds too for pain and seizure meds, etc. but am having a hard time with that too. I am much more alert than I've been since last May when I went into the hospital, and I like that! I hate feeling "drugged up" and sedated. I have decided to go see a counselor/therapist too and am in the process of looking for one. I have no shame in sharing this, nor should I. Let's me honest.....being sick for so long, almost losing my life last May, being in constant pain, having to burden my family and loved ones with taking care of me and everything else (the house, meals, the pets) which makes me feel really guilty and badly and has caused a lot of issues, well, all of this has made me depressed. One more thing I need to deal with and I am going to do just that. I realize that I am not a "super woman" like some women are, I am just human and don't want to be a burden anymore, so I know I need help!! I am actually looking forward to the trying acupuncture, PT when I can, and talking to a counselor or therapist who can help me figure out where to start and go from here! Having shared all of that, these are the reasons I have not written or posted or kept on on Facebook or e-mail for some time now.

Team Hyndman has had a lot of things going on since my last post!!! We have a new addition to our family! Over the holidays/New Years, we got a new puppy, Olive Lou Hyndman. She is now 6 months old and is a Boston Terrier like our Oreo was. She is so fun, full of love, and a spit-fire! We love her and she keeps us busy!! Ozzie and Charger love her too.

Nick just finished his second year at The University of Toledo and is still a business major and wants to minor in Disability Studies. He's been busy this year with The Toledo Crash (wheelchair football team) and they played at Lourdes College and again against The University of Toledo football team and The Crash won and Nick got MVP for the game! They were on the news, which I'll post on here soon. He's been writing more music and recently spoke for a local school district in Findlay, Ohio for a disability awareness expo.

Isabella has been enjoying 7th grade, band and choir at school and she took the year off of dance this year and I'm not sure how she feels about that. I think she is trying to figure out what she wants to do, be social, get good grades, and be a 13 year old girl! She is still even more of an animal lover and such a big help to everyone in the family! She loves to cook, and cooks a lot of meals and bakes a lot. She's always thinking of others, doing things for others, and is not worried (at all) about being "popular" or self-centered like a lot of girls her age seem to be. She's super sensitive, which I think is one of her best qualities, and with maturity and experience, this will serve her and the world very well. It's hard to be so sensitive at her age though. She takes after me so I remember what that was like at that age. (ugh!)

A lot has happened with my Mom and Dad since my last post. (PaPa and NaNa Jagel) They just had to put their almost 12 year-old dog, Johnnie, to sleep this past week which was really sad for everyone. He had been my sister's dog, then my Mom and Dad's and he was very sick with cancer. The biggest news is that my Mom is a match for my Dad for a kidney. (I'm not up to writing all of the correct medical terms right now....) They are signed up at Henry Ford Hospital in Detroit, MI. My Mom is having a tough time as she has to get off of her meds for Fibromyalgia so she's in a great deal of pain and is in the process of getting all of the tests needed to be able to donate her kidney to my Dad. I must admit, I have mixed feeling about it all because I worry about them both, but we are just here to love and support them in any way we can. We could still use prayers for them. My Dad is still on dialysis of course and is still helping Nick out as his home health care aide too. (wow!!!) He's still doing things for other people all the time even while in dialysis! My Mom is taking a leave from work with everything going on and how she's been feeling lately getting off of her meds, etc.

We were also sad that Greg's Granny Luther died this year. The kids called her "Great Granny" and when Bella was little she called her "Aunt Granny":-) It's sad because we think of Granny and PaPa at our wedding almost 23 years ago, Granny's wonderful cooking (her famous sweet potatoes and salads........) Things will never be the same without them but they are now together in heaven.

I believe I've covered the "major" happenings with Team Hyndman since our last post. Again, I hope to post more regularly and get caught up on some pictures soon too. (fingers crossed!)

Blessings:-)
Amy

PaPa Jagel and Nick @ UT vs. Crash Game

Our puppy Olive Lou Hyndman

(I love you Olive Lou)

Feeling Thankful

2012-11-28T01:58:00.000-05:00

Hi all,

We hope everyone had a Happy Thanksgiving! We spent the holiday with family and it had a lot of meaning to us this year. Since my illness and hospitalization this year, every event that happens, I can't help but thinking, "I may not have been here for this" because my doctors told me if I had waited to go to the hospital, I truly may not have survived and it hit us hard. Not to be "gloomy" but when you come close to death, it changes your perspective on everything and I am more aware of what is important to me. MOST important is FAMILY! We just really felt more grateful than ever to be together.

Since my last post, Isabella has had choir and band concerts and Nick has had football. We all went through colds/coughs sickness, as it is that time of year and it always seems to make the rounds in our house. We are missing Oreo so much and are considering getting a rescue dog but are taking our time to make sure we are ready. My Mom and Dad adopted the most perfect dog, Benjamin, from Planned Pethood and he is wonderful and now their other dog Johnnie has a buddy to play with! My Dad is on dialysis three days a week at the dialysis center. We all went together (my Mom, sister, brother, and us) to get him an IPad for his birthday this month to use at dialysis as he is there for so many hours per week, to watch movies, listen to music, read, etc. He has already used it and we just gave it to him last week! We also went with him for his birthday as a family to see the Trans-Siberian Orchestra (did I spell that right?). It was really an amazing concert! We loved it. The kids are just busy with school and Nick is getting ready for finals in a few weeks and has lots of papers to type.

Nick types all of his papers with one finger due to his CP. This is what works best for him after YEARS of occupational therapy and we even bought Dragon Naturally Speaking software which didn't work because of Nick's speech impediment due to his CP. We've found it takes him much more time to have us write for him as he dictates. It's frustrating for him. So, this is what he does and we are proud of him because it is VERY time consuming and physically exhausting for him to type papers. It takes up all of his time to complete his college work and we're amazed at his determination!

Still no resolution to the lack of a PCA for school and family still goes with him. Still no progress with social life for Nick but we have not been able to work on these issues with him because of my illness and ongoing recovery which has been slow. We feel really overwhelmed and badly as parents that we can't address these issues more right now and hope to be able to work in these issues with Nick, try to find solutions for him and help this next year. We're still in kind of a "do the bare minimum to get through" mode while I'm recovering and the kids and Greg have to concentrate on school and work. Again, I feel so guilty about this but I know they are glad I'm "still around", so it's just what we have to do for now. I feel like screaming "help!" I mean, we need help to make progress or figure these issues out. I cry myself to sleep over Nick's feeling lonely, etc. many nights a week and worry that we haven't done enough to prepare him for independence or what the future holds for him. I am afraid of what the future holds sometimes, yet I know Nick will do great and as a family, we can help him get to where he wants to be but we just don't have all the answers.......and I feel we've been talking about this, worrying about this, trying everything since Jr. High and he's still experiencing this degree of social isolation and lack of "getting out there". Also, Nick just doesn't put himself out there often because he's said he's gotten hurt so many times, made fun of, rejected, etc., that he doesn't put himself out there as a means of protecting himself. This is an ongoing discussion we have with hi, believe me! Well, I guess we'll have to just keep on "keeping on" and as I continue to get better physically, we hope to be able to get back to addressing some of these issues.

One last new development, bathing has been a problem, unsafe for Nick and us who are unable to lift him, We've had bars and a shower chair for years but we still have lots of slips, falls, bruises. So, we are getting a "walk-in tub" this month because we hope it will be a safer option for Nick and easier for anyone helping him when he needs it and he prefers to be as independent as possible with bathing, but still needs help with shaving, etc. So, the bathroom will be under construction for awhile this coming month but we hope this is a good solution for Nick and he'll be able to have a whirlpool tub which will help with his constant muscle soreness and pain. Nick has said always that the only time he's really not in pain is when he's in the water, so he may be able to "soak" his muscles in this tub instead of using a shower chair where he gets cold and then his muscles get "rigid and stiff" and painful. We'll see.............................

Also, thanks to everyone who joins us on Facebook, which we can share a little more info. on. We get several other bloggers with CP who share their blog info. on our FB page. So, check it out if you're on Facebook.

Blessings:-)
Amy

We're Still Here!

2012-10-05T18:54:00.000-04:00

Hi all,

It's been almost four months since my last post as I've been concentrating on my recovery and working on getting my health back. (see my last post for details if you don't know what I'm talking about! :-) ) I am slowly and steadily getting better. The doctors said it could take up to a year to get the infection completely out of my spine as it is in the discs. I am no longer having to use a walker unless it is for longer distances, and I now have to work on getting my strength and stamina back! The worst part for me is the side effects of the strong antibiotics and seizure meds, as well as the pain meds I am on. I am not able to drive yet so it's a bit difficult on my family as I have to depend on them for rides, etc. Top be honest, I feel like a burden to them but I am grateful to be alive. I just have to keep my thoughts positive. I am so grateful to my family and friends for their prayers, cards, help, etc.

A lot has happened in the past four months. A few highlights:

Nick turned 19 in August and is in his second year of college at the University of Toledo. He is thinking about changing his major (more on that later) and we are struggling with needing a personal care assistant to help him with physical tasks at school that he is unable to do on his own. So far, no luck. We are taking it, literally, week by week and basically my husband, Greg, my Dad and Greg's Mom have taken him and taken notes, etc. for him. It's stressful for us but he's worth it. We have no idea yet how this will be resolved, if it will at all. Nick is playing wheelchair football again with the Toledo Crash.
Isabella turned 13 in September and is in 7th grade. She is still in band and several other activities at school. She decided to take this year off of dance. We are a bit sad about it as she has been dancing for the past 7 years and she loves it but she feels it's too much with her school activities and homework and to be honest, we are having trouble getting her there as I cannot drive yet and Nick is in school and we rely on us and family to be with him when he is. Isabella made the decision though, having nothing to do with that. We hope she'll decide to pick it up again next year and if not, finds something else she is passionate about. She's a bit of a perfectionist and we are working on this with her. She wants to do everything perfectly and this puts a lot of pressure on her. We went to Kalahari Resort (a local indoor water park we've been to many times before and we just love) this past weekend to celebrate her "13th" birthday (we went up to Lake Michigan for Nick's 13th) and we had a blast. It was a much needed time away as family without stress. I couldn't do a lot of the things I would normally do but I did the wave pool and lazy river and was "there" with them. Greg and the kids were a little more adventurous and had so much fun. I was able to get a lot of rest. It was just a really nice time. I kept thinking to myself, as I do often now, I came close to not being here for "this" and was so grateful just to be there with Greg and the kids. I have many moments like that now.
Sadly, our 11 year-old boston terrier (our first family dog), got very sick with cushings disease and the medications we tried for his treatment didn't work. He went downhill very quickly and it was painful to watch, so we had to put him to sleep in August. We were (still are to be honest) heart broken. It was so hard to watch the kids go through that as well as our two other dogs really miss him.

So, it's been a challenging year since I got sick in May and right now, we're just in survival mode, doing what we have to do to get through each week. We find when we go through times like this, nothing gives us more comfort than being together, the four of us. It's like we NEED that and as long as we are together, we are "ok". So, we decided to try to simplify things whenever we can this year, not do so much, stay close to home and spend as much time together as we can. I have to continue to make it my number one job to get better so I can be able to pull my weight again and help Greg and the kids. Right now, it's hard to do every day things still, so I feel really guilty that everyone has to kick in more. We are a team. I always say it and we call ourselves "Team Hyndman". That has always been the case but it has never been more clear to me than it is now. I am grateful for that more than ever!

Finally, my Dad, "PaPa Jagel" to the kids, has been struggling with kidney failure and is beginning dialysis and is on the list for a kidney transplant. He has been Nick's home health care aide for years not which has been good for him and for us. He's still doing it but we are just taking that week by week too. The most important thing is his health and we are aware we may have to make other arrangements if/when he is not able to do it, but we don't know when or if that will be and we just want him to be healthy and well! So, we are asking for prayers for my Dad, Jim Jagel, and are greatly appreciative for the prayers he's been receiving from our friends and family! Please continue to pray for him and his good health! Thank you! :-)

That is it for now. I'm sure I probably left something out but I've hit the "major" developments with Team Hyndman since my last post. I probably won't be posting as much as I used to for awhile, while I am continuing to get better and I am starting physical therapy soon. I will make an effort to post as much as I can though and not let so much time go by. There are so many "disability" issues with Nick I'd like to touch on that we are facing with him in college, trying to get his social security benefits straightened out (such a mess since I've been sick and was unable to deal with it like I should have!-UGH!!!!!!), etc. I will write about those things when I can. Also, Nick has a new song he put together on YouTube, which I'll have to get the info. for a post it. He still loves to write songs and express himself through music.

If anyone is actually still reading this blog, thank you for hanging in there with us! We appreciate the support!

Blessings:-)
Amy

Thank You Everyone

2012-06-10T01:27:00.003-04:00

Hi all,

I (Amy) am home from Toledo Hospital as of yesterday. I was there for 20 days, in the ICU and then a step-down ICU. I want to thank everyone, my family and friends, for all of your support, prayers, cards, visits, etc. I can tell you that is what helped me get through this so far and I have so much love and gratitude for all of you! I want to tell you that I have learned something FOR SURE. I can say that I am 100% sure that whenever a bad thing happens to you in life, a challenge, whatever, there is always a lesson and/or gift that comes with it. I actually learned this a long time ago. Most of the time, you don't always see it or understand it until much later, but in my case this time, I already see it and am so grateful all of this happened to me. According to my doctors, I may not be there to tell you this if this hadn't happened and we didn't find out about this infection in my body. When I went in 20 days ago, I had injured my back ( a common thing with me) and I had sepsis, a staph infection in my spine and blood stream. They operated on my spine and found the staph infection in my discs of my spine and there was an area, mass that was hardened, gel-like, which indicated the infection had probably been there a long time and was spreading. It did spread to several other areas in my spine but they got a lot out during surgery. To back up a little, when I was 14 on a youth group trip, I dove into a sandbar and cracked my spine in several areas, just something I've lived with, "no big deal". It became a degenerative condition and over each decade seemed to get worse, the back pain and ease of injuring my back. I was used to it and often just dismissed it. The day I went into the hospital, I was lifting something and thought I pulled a muscle in my back as I had done so many times before, but the pain was greater than anything I had EVER experienced (from back pain or natural childbirth, nothing was as bad as this!) and I went to the ER. Within 2 hours, my fever was 102 and they transferred my to ICU and the tests began and found the infection and led to the surgery, etc. The doctors (infectious disease dr., neurosurgeon, neurologist) feel the infection was probably there for a long time, either from 2 years ago when I broke my ankle and had surgery or last year in June when I burned the bottoms of my feet, second degree burns, which are still not healed as of today. ( I have not felt the bottom of my feet for over ten years due to my spinal injury from that dive at 14) They feel we won't know but it was likely one of those two events when this infection entered my body and landed on my spine, in the discs. So, had this not happened, we may not have caught this in time and the outcome could have been much worse AND with the surgery they did to release the nerves and discs (to be able to clean out the infection in my discs!), I will likely have a great deal of relief in my back pain for the first time in a very long time if all goes as they feel it will over the next year. I have a nurse coming to the house daily to give me my antibiotics and other meds through my PICC line and to take care of my PICC line for 8 weeks and then after that, I'll be on antibiotics for the next year to make sure we get rid of this infection. I have to follow up with my doctors in the next 2-4 weeks and another MRI next month to monitor the infection, etc. At some point, I'll have PT too. So, it will be a journey over the next year to heal but I don't mind at all! I am just so happy to have this opportunity to finally feel better and heal. It's been a bit frustrating over the past 2 years, being sick and not knowing exactly what was causing all of it, kind of attributing it to this or that, nothing helping. Now, I finally know what as going on and can heal my feet, my back, my body overall! So, when I say I'm grateful, I REALLY MEAN IT from the bottom of my heart! I can see God's hand in this and the love and support I've received from everyone just reaffirms for me what is most important in my life. I am going to work hard to heal and again, thank you!

Love,

Amy (and Team Hyndman)

Local Resources

2012-05-18T15:44:00.001-04:00

Hi all,

Here is some information for those who live in Northwest Ohio from the Family Information Network, which I've mentioned in the past as a great resource for those in our area who have family members with disabilities. I have a link to FIN in our Useful Links section on this blog (http://www.unitedwaytoledo.org/fin ). Here is the information:

http://www.unitedwaytoledo.org/sites/unitedwaytoledo.org/files/webform/Community%20Resource%20Guide.pdf - Resource Guide

http://www.unitedwaytoledo.org/sites/unitedwaytoledo.org/files/Summer%20Rec%202012.pdf - 2012 Summer Programs for Kids with Disabilities

Your House or Mine
This group is facilitated by Family Information Network (FIN) and discusses housing situations for your child with special needs. Your House or Mine is simply other parents in the same situation asking the same questions, and parents who have already been there & done that who may have some answers. We also offer guest speakers, group discussion, updates on policies or regulations, and social opportunities to discover how to make the most of your child moving out. Contact Diane Frazee at diane.frazee@unitedwaytoledo.org

Calendar of Events : http://www.unitedwaytoledo.org/sites/unitedwaytoledo.org/files/March%20April%202012.pdf

I have to say, it's these local organizations and resources that have been SO helpful to us on numerous occasions when we've needed information, resources, support for Nick as he was little and while he was growing up. FIN and The Ability Center of Greater Toledo (www.abilitycenter.org) were two organizations that we relied upon many times over the years. FIN has been staffed by parents of children with disabilities over the years and when Nick was an infant (less than 6 months old), these people were the first parents of children with disabilities I met. It was a raw time for us and I remember it like it was yesterday, and their help and support were comforting to me. I'm sure those of you who live in other areas have these "treasures" / local resources that you find helpful and I encourage you to spread the word to other families and people who may find their services useful whenever the opportunity arises.

Blessings:-)
Amy

'Dreamer' - A Short Film By Jason D. Ashberg

2012-05-14T18:22:00.000-04:00

Hi all,

I received this e-mail I'd like to share:

Dear Amy,

I was born with mild Cerebral Palsy. I was lucky to receive treatment early in my childhood. I'm very moved by your blog and wish you and Nick love and healing! I have been following my dream of becoming a filmmaker. I recently wrote a short film that reflects a lot of my experiences living with Cerebral Palsy. I'd like to share my funding campaign for my short film "Dreamer" with you. Please take a moment to watch my pitch video by clicking on the link below. I would greatly appreciate your assistance to pass along my link and/or post on your website, or simply get the word out so I can get my film made. Most importantly, I plan to donate 50% of any profits the film makes to United Cerebral Palsy

Thank you!

Love Jason

View My Pitch Video
http://igg.me/p/34374

http://www.jasonashberg.com/

Check out Jason's website and campaign! Thanks for sharing this Jason and best of luck with your campaign for Dreamer. Keep us updated!

Blessings:-)
Amy

Push Girls

2012-05-02T18:10:00.002-04:00

In the same way MURDERBALL, winner of the 2005 Audience Award for Best Documentary at the Sundance Film Festival, took the lid off the competitive world of “wheelchair rugby,” Sundance Channel is bringing an unfettered, uncensored glimpse at what it means to be sexy, ambitious and living with paralysis in Hollywood with Push Girls, a new original non-fiction series from producer Gay Rosenthal (Ruby; Little People, Big World). This half-hour long docu-series traces the lives of four dynamic, outspoken and beautiful women who, by accident or illness, have been paralyzed from the neck or the waist down. Abilities Expo is thrilled to present our attendees the opportunity to meet the stars of Push Girls, ask them about their experiences and see clips of the new original series which will premiere on June 4, 2012. "The indomitable spirit of this series will give viewers permission to stare at a world that they may previously have been too polite—or too frightened—to explore,” says Sarah Barnett, General Manager of the Sundance Channel. “Sundance Channel allows the Push Girls to convey the stark reality of their lives, something our broadminded audience will appreciate. We are remarkably fortunate to get to work with this exceptional group of women." Gay Rosenthal commented, "Watching the Push Girls tackling life with spirit and confidence is not only inspiring but compelling. The show challenges perceptions about life in a wheelchair, giving the audience an honest, no nonsense look into their world. It's real, it's outspoken and it's from the heart. I am delighted to share their story on a network that prides itself on authentic, bold and respectful storytelling.” Taking a matter-of-fact attitude towards their disabilities, Push Girls offers a candid view of the women as they pursue their own claims to happiness as they enter different stages of their lives. Angela is a down-to-earth, stunningly gorgeous model who has recently become separated from her husband. Auti, a dancer, rapper, actress and all-around powerhouse, is crossing her fingers that, at age 42, she can try for a baby with her husband. Reflective and pragmatic Mia is taking stock of her relationship with her able-bodied boyfriend; a onetime competitive swimmer, she is about to attempt to swim for the first time since high school. Flirty, wisecracking Tiphany is doing some deep soul-searching about her sexuality, settling down and finding her calling in life.

For more information, visit www.push-girls.com .

(http://www.abilitiesexpo.com/newyork/specialfeatures_pushgirls.html )

Dog Days Of Summer - June 7, 2012 - Information Below

2012-04-17T18:26:00.001-04:00

Save the Date! Come join The Ability Center for an evening of fun as we welcome Assistance Dogs into the family! June 7, 2012 (5:00-8:00 PM) Twylite Thursday at The Pinnacle Don't miss out on the fun! Mark your calendars for this special event!

Walk For Williams Syndrome - May 19th 2012 Perrysburg, Ohio

2012-04-17T18:03:00.001-04:00

Hi all, I received this e-mail today from my friend Michelle:

We are holding the very first Northwest Ohio Williams Syndrome walk onMay 19th from 9 AM to 1 PM - My son, Alex, was born with Williams syndrome and the WSA has been instrumental in providing information and funding research. This is a very rare condition and people will be coming from all over northern Ohio and southern Michigan to attend. The event is at Grace United Methodist Church and then we will walk at Woodland Park. After the walk, there will be carnival games, entertainment provided by the Perrysburg High School Show Choirs and lunch. To register or make a donation visit: www.walk4williams.org Online registration ends April 27th. You can contact me if you would like to help with the event or have any questions. Michelle Self maselfadvocate@hotmail.com Alex would love to see you there!!!!!!!!!!!!!!!!!!!!!!!! The picture is of Alex and his new therapy dog, Hamden! Thank you!!!! Michelle

Alex and his therapy dog, Hamden

http://www.walk4williams.org/

If you are able to join the walk, that would be GREAT but whether you can walk or not, please pass this information on to anyone you know who may be interested and able to walk. You can also click on the link above and make a donation as well as get more information.

Thank you!

Blessings:-)
Amy

The Toledo Crash VS. The University of Toledo Varsity Football Team April 22nd, 2012 - Join Us!

2012-04-17T16:56:00.001-04:00

Hi all!

Please join us this Sunday April 22, 2012 at 1:00 pm at The University of Toledo's Rec Center to see The Toledo Crash, Nick's wheelchair football team, play The University of Toledo's Varsity Football Team! Of course UT's team will play in wheelchairs too. It's a fun game to watch!

We'd love to get a lot more people to attend these games so join us if you can and please pass this info. on to anyone you may know who would be interested.

On a side note, Nick recently got his new sports wheelchair! It is titanium, which is the best part to us, so it can take a lot of bumps and hits which means less wheelchair repairs / expenses for us!:-) It's made for wheelchair court sports like football, basketball, rugby, etc. It's light and easy to move in. Also, speaking of wheelchair rugby, if you've never seen the movie Murderball, rent it. It's a great movie about wheelchair rugby players. I'll warn you, there are sex scenes and a lot of bad language, but it's totally worth watching the movie even if these things offend you (you can skip those parts!) because it's inspirational and just a great movie!

Here's a few pics of Nick's chair:

Nick now has a manual wheelchair (we use when we have our van, not Nick's van, because our van does not have a wheelchair lift and this chair is light and we can lift it in and out of our vans-plus he needs to propel in this chair or have someone push him), a power wheelchair (he uses on campus and when he's out and about and when we have his van with the wheelchair lift), a beach wheelchair we got recently for use on the beach and in sand (we can't use any of his other chairs in the sand, the can't propel in sand-the beach wheelchair has huge wheels for sand), and now his sports wheelchair for court sports, a walker (he really doesn't use this much anymore, it's not so efficient), a Segway with a special seat we had made for him, his paralympic hand-peddled bike, his AFO's (Ankle-Foot Orthotics or what we call "leg braces"), his hearing aids and FM system for his hearing aids, and of course his new van with a wheelchair lift. Insurance paid for his manual wheelchair and his power wheelchair, as well as about 75% of his AFO's and that's it.

I think we need to build a shed one of these years coming up to hold all of his equipment which is mostly all in our garage or his van and the house. But we wouldn't have it any other way:-) It's just how Team Hyndman rolls!

Blessings:-)

Amy

Greg's license plate - "Team Hyndman"

Nick's Song on iTunes

2012-04-04T18:26:00.000-04:00

http://itunes.apple.com/us/album/the-man-ill-never-be/id516288517?i=516288524

Hi all,

I've posted before that Nick likes to write poetry and songs. He's written several songs actually, and he just put one of them on itunes! (www.iTunes.apple.com) It's called "The Man I'll Never Be" by Nick Hyndman. So, CHECK IT OUT and buy it!!!!! Spread the word please! Thanks!

Pretty impressive for someone who is hearing impaired with cerebral palsy, huh? Not that we don't know how smart and talented he is in a lot of areas but we're happy he enjoys music so much and likes to spend his spare time creating. Way to go Nick!!!!

Blessings:)
Amy

Free SmartPhone App Shows Travelers with Dogs "Where to Go"

2012-03-23T19:23:00.000-04:00

Nick's service dog, Charger, in the hotel in Clearwater Beach, Florida, with his "Pluto" after a long day at the beach

Hi all,

I've mentioned Nick has a service dog, Charger, from Assistance Dogs of America and today, I received an e-mail from their Client Services Director, Jenny Barlos, which I am attaching below. It has some useful information about a new app.

To be honest, so far, we've only traveled by car with Charger and that was by choice because we need to do more research on air travel with a service dog. We've heard "horror stories" about it from others and some that said it was "OK" but they told us things we didn't like for Charger's sake. We didn't feel comfortable with what we've "heard". That decision, however, has limited our vacation choices and we've recently talked about doing more research into air travel so we can take a trip that would require air travel if/when we choose. I'll post more on what I learn later. For now, here is the e-mail I received below with a link to the app.

Blessings:)
Amy

Here it is:

Here is some information for a directory for airport service animal relief areas. Let me know if you have any questions. Thanks!

Jenny Barlos

Client Services Director

Assistance Dogs

www.adai.org

Assistance Dogs is a program of the Ability Center

Subject: Free SmartPhone App Shows Travelers with Dogs "Where to Go"

Free App Shows Travelers with Dogs “Where to Go”

Dear Judy,

Working Like Dogs has just released a free app that lets travelers with dogs quickly find “Where to Go.”

If you’ve traveled with a dog, you know that while many airports now have dog relief areas, they can be difficult to locate. “Where to Go: a directory of airport animal relief areas” gives directions to relief areas at U.S. airports.

You can find download links to the iPhone and Android apps at Working Like Dogs. It’s free!

Available in iPhone and Android versions, both versions make use of accessibility features on the phones which make the app usable for people who are visually impaired or blind.

If you’re traveling with your dog, whether a pet, assistance dog or other types of working dog, the “Where to Go” app gives you the information you need when your dog has got to go with just a click.

U.S. airports are listed, with short directions to the relief area at each. There are also links to U.S. Department of Transportation FAQs and updated ADA regulations about service animals, as well as other information.

After having challenges finding the relief area in some airports, Marcie Davis, founder of Working Like Dogs and International Assistance Dog Week, came up with the idea for the app. She wanted it to be a quick and easy tool anyone could use, and hopes the new app will help relieve a bit of the stress that can be a part of traveling with a dog.

The app is free so it can reach the largest number of people with assistance dogs and other working dogs. The app was developed for Working Like Dogs by Apptology, Inc.

Download the “Where to Go” app for your iPhone or Android phone at www.workinglikedogs.com and tell your friends!

Spread The Word To End The Word 2012

2012-03-08T08:57:00.000-05:00

http://www.r-word.org

Hi all,

To continue on my post from yesterday, which was the official day to recognize "Spread The Word To End The Word". The website is above and I strongly encourage you to visit it and check out the resources part of the website. You can buy t-shirts, bands, hats, and they have fact sheets, printable posters, and a lot more. Also, there are MANY more videos and stories in addition to the one I posted yesterday. If you are a member of our group on Facebook, Cerebral Palsy Family, I posted several of the stories I received, but there are so many more. Many thought-provoking pieces. For people who do not understand this movement or why it is "such a big deal", I think they would understand once hearing some of these accounts.

So, check it out when you have the time. It's worth it.

Blessings:-)
Amy

Below is a factsheet from the resource page of www.r-word.org:

Spread the Word to End the Word
Fact Sheet

WHAT
Spread the Word to End the Word™ is an ongoing effort by Special Olympics, Best Buddies and our supporters to raise the consciousness of society about the dehumanizing and hurtful effects of the word “retard(ed)” and encourage people to pledge to stop using the R-word.

The campaign, created by youth, is intended to engage schools organizations and communities to rally and pledge their support at www.r-word.org and to promote the inclusion and acceptance of people with intellectual and developmental disabilities.

WHEN
The official annual day of awareness is held the first Wednesday of every March. While most activities are centered on or near that annual day in March, people everywhere can help spread the word throughout their communities and schools year-round thru pledge drives, youth rallies and online activation.

WHO
Spread the Word to End the Word was founded by college students Soeren Palumbo (Notre Dame 2011) and Tim Shriver (Yale 2011) in 2009, and continues to be led by passionate young people, Special Olympics athletes and Best Buddies participants across the United States and in many other parts of the world.

Celebrity activist John C. McGinley is a spokesperson for the campaign.

WHY
Respectful and inclusive language is essential to the movement for the dignity and humanity of people with intellectual disabilities. However, much of society does not recognize the hurtful, dehumanizing and exclusive effects of the word “retard(ed).”

It is time to address the minority slur “retard(ed)” and raise the consciousness of society to its hurtful effects.

HOW
Visit www.r-word.org to learn how you can Spread the Word to End the Word.

For more information, contact:

Mandy Murphy, Special Olympics
mmurphy@specialolympics.org
202-824-0227

Or

Heather Schatz, Best Buddies
heatherschatz@bestbuddies.org
305-374-2233, ext. 207

Think About It And Spread The Word

2012-03-07T18:48:00.000-05:00

Hi all,

PTHS: Spread The Word To End The Word 2012 - "I'm Eric" from McCoy Studios on Vimeo.

PLEASE watch this video and think about what is being said. Spread it to anyone you know.

We posted last year about using the word "retarded" or the "r" word. It's just NOT ok and I'm (we all are) very firm on my feelings about this. It's just NOT ok to make fun of people with disabilities and even when people say, "that's not what I'm doing", or "I'm just joking", it's not ok! Just don't do it! It's the same thing as using a racial slur, or a the "n" word, or the word "fag" or any word that is used in a derogatory way to describe a group of people. It's mean, it's wrong, it's NOT a joke or not funny.

These types of words are used to negatively describe a group of people, to make fun of them, and when used in ANY way, most everyone knows that this is they type of word they are using. I always wonder if their parents used these types of words or they think, "everyone does", "lighten up". Well, NO! It's still just wrong, and it HURTS.

People have called our son, Nick, this word. The first time, he was just a baby in a "special" wheelchair stroller when I heard some kids call him that. Then, on a playground when he was very young, causing him to cry all the way home, by kids at his high school, even though he was "well-liked" by many and had lots of kids who were friendly to him. it hurt him and it hurt us very much.

Just spread the word about this, please and STOP using this word please. Think about what has been said please.

Thank you.

Blessings:-)
Amy and Team Hyndman (Greg, Amy, Nick, and Isabella Hyndman)

March 25, 2012 is National Cerebral Palsy Awareness Day

2012-03-05T14:03:00.000-05:00

Hi all,

March 25, 2012 is National Cerebral Palsy Awareness Day. I found this information at United Cerebral Palsy's website (www.ucp.org) a the link below:

http://www.ucp.org/get-involved/events/calendar/2012/03/25/national-cerebral-palsy-awareness-day.

I found this online at http://www.govtrack.us :

"Feb 17, 2011 - Agreed to Senate. This is the latest version of the bill currently available on GovTrack.

SRES 75 ATS

112th CONGRESS
1st Session

S. RES. 75

Designating March 25, 2011, as ‘National Cerebral Palsy Awareness Day’.

IN THE SENATE OF THE UNITED STATES

February 17, 2011

Mr. ISAKSON (for himself and Mr. CASEY) submitted the following resolution; which was considered and agreed to
--------------------------------------------------------------------------------
RESOLUTION

Designating March 25, 2011, as ‘National Cerebral Palsy Awareness Day’.

Whereas the term ‘cerebral palsy’ refers to any number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and the muscle coordination necessary to maintain balance and posture;

Whereas cerebral palsy is caused by damage to 1 or more specific areas of the brain, which usually occurs during fetal development, before, during, or shortly after birth, or during infancy;

Whereas the majority of children who have cerebral palsy are born with the disorder, although cerebral palsy may remain undetected for months or years;

Whereas 75 percent of people with cerebral palsy also have 1 or more developmental disabilities, including epilepsy, intellectual disability, autism, visual impairment, and blindness;

Whereas the Centers for Disease Control and Prevention has released information indicating that cerebral palsy is increasingly prevalent and that about 1 in 278 children have cerebral palsy;

Whereas approximately 800,000 people in the United States are affected by cerebral palsy;

Whereas, although there is no cure for cerebral palsy, treatment often improves the capabilities of a child with cerebral palsy;

Whereas scientists and researchers are hopeful that breakthroughs in cerebral palsy research will be forthcoming;

Whereas researchers across the United States are conducting important research projects involving cerebral palsy; and

Whereas the Senate is an institution that can raise awareness in the general public and the medical community of cerebral palsy: Now, therefore, be it

Resolved, That the Senate--

(1) designates March 25, 2011, as ‘National Cerebral Palsy Awareness Day’;
(2) encourages all people in the United States to become more informed and aware of cerebral palsy; and
(3) respectfully requests the Secretary of the Senate to transmit a copy of this resolution to Reaching for the Stars: A Foundation of Hope for Children with Cerebral Palsy."

So, there is just a little info. for you about the history behind this day.

I have no information so far regarding any events in honor of this day,but if I find anything else to share, I'll post it.

Blessings:)
Amy

March is Developmental Disability Awareness Month

2012-03-04T17:08:00.000-05:00

Hi all,

March is Developmental Disability Awareness Month in the United States and there are various events throughout the US celebrating this month. I was looking for some good basic info. to explain it and the history behind it online. The ARC organizations in several states had some info. but I am posting a good article I found on the Arc of Schuyler which is located in Watkins Glen, NY. (www.arcofschuyler.org) Again if you go to the National Arc Website, www.thearc.org, you can search for a chapter in your area to look for any local events, or do an Internet search for events in your area. Anyhow, below is a good overall explanation of the history of the month:

"March is Developmental Disabilities Awareness Month

People with developmental disabilities are valuable contributing members of our community who have much to offer. They have proven to be reliable workers and employees and excellent volunteers, capable of meeting or exceeding expectations and standards. With the assistance of organizations like The Arc of Schuyler, people with disabilities are leading lives of purpose. You can get involved with Developmental Disabilities Awareness Month by contributing to The Arc of Schuyler’s Annual Fund Drive in March and making The Arc your charity of choice.

History of Developmental Disabilities Awareness Month

In 1987, President Ronald Reagan declared March as National Developmental Disabilities Awareness Month. The proclamation called for people to provide understanding, encouragement, and opportunities to help people with developmental disabilities lead productive and meaningful lives. This national proclamation generated renewed respect for people with intellectual and developmental disabilities and has increased awareness of the issues faced by this constituency and by their families.

Purpose of Developmental Disabilities Awareness Month

The month will commemorate the progress toward improving the lives of people with intellectual and developmental disabilities and also highlight the challenges that remain in achieving full inclusion for people with intellectual and developmental disabilities.

Challenges Faced by People with Developmental Disabilities

Despite the great strides that have been made toward expanding the rights of people with intellectual and developmental disabilities many challenges stand in their way of living fully inclusive lifestyles.
•Budget and Appropriations
•Civil Rights
•Education
•Employment
•Health Care
•Housing
•Long Term Supports and Services
•Medicaid
•Social Security

Get Involved During Developmental Disabilities Awareness Month

The Arc of Schuyler is one of over 700 Arc chapters across the country on the frontlines of grassroots advocacy efforts. These Arc Chapters are private non-profit organizations that depend on private donations. During March they are encouraging people to get involved during Developmental Disabilities Awareness Month to increase awareness about the issues confronting people with developmental disabilities.
•Volunteer
•Employ persons with a developmental disability, or reach out to businesses about employing people with developmental disabilities.
•Invite people with disabilities to participate at your organization as a volunteer
•Contact policy makers and legislators to speak out on issues impacting people with intellectual and developmental disabilities
•Remind others that people with developmental disabilities deserve respect and can make meaningful contributions to our community
•Make Us Your Charity of Choice"
(www.arcofschuyler.org - posted Jan. 15, 2012)

So, if you're interested in getting involved in someway, they have some good suggestions above. We personally like the organization United Cerebral Palsy, for obvious reasons, www.ucp.org, although they do not have a local chapter in our area. When I've needed info., I go to their website and in the past, I've contacted them for various things. Of course, we also love our local area organizations and resources, most of which I have the links noted in the "Useful Links" section on the right side of this blog page. I just wanted to get the information out there to make people aware and if someone is interested, hopefully, you can find info. here to look further in any way you see fit.

For those of you who don't know, the term "developmental disability", or "DD" for short in some states, is used to describe a lifelong disability (no cure) which attributes to a physical and/or mental (intellectual) impairment, and it happens BEFORE the age of 18, usually before, during, or after birth in most cases, although anytime before the age of 18. It is a term mostly used in the US and Canada. So, MANY disabilities and ranges of impairment are included under the umbrella of his term.

Of course, cerebral palsy is a developmental disability. Cerebral palsy is a term used to describe a group of chronic conditions affecting body movements and muscle coordination. It is caused by damage to one or more specific areas of the brain. "Cerebral" refers to the brain and "Palsy" to a disorder of movement or posture. I've said this before, but there is a wide range of impairments within the disability of cerebral palsy. Some people have intellectual impairments with CP but most don't. In Nick's specific case, his disability was caused by brain damage he sustained within the first week after he was born (he was born healthy) due to jaundice which was not treated properly. This kind of thing happens but it's rare. In Nick's specific case, he does not have any mental or intellectual impairment at all, just physical impairments. It varies with everyone. People make a lot of assumptions (which is a post for another time!) about CP so I like to educate people whenever I have the opportunity about Nick and his disability.

Blessings:-)
Amy

Correction (Re: Crash football game time)

2012-03-04T16:32:00.000-05:00

Hi all,

In my last post about Nick's wheelchair football team, The Toledo Crash's game on March 24th, I was informed that it is no longer from 6-8 pm, but it now starts at 1:00 pm at Owens Community College. If there are any other changes in time/location, I'll post the info. as soon as I get it.

Blessings:)
Amy

The Toledo Crash VS. Owens Express March 24, 2012-Spread The Word!!!!

2012-02-24T16:54:00.000-05:00

Hi everyone!

The Toledo Crash (Nick's Wheelchair Football Team) vs Owens Express:

Saturday March 24th 6-8 pm at Owens Community College

Join Us! Come and watch and you may be inspired, as well as have a good time:)

http://www.facebook.com/l.php?u=http%3A%2F%2Fthe-toledo-crash-football-team.com%2F&h=7AQEXSxjVAQE1MDLmGFG7eqBxj0xWxasX2DUGPKXumQ_j_Q

I've talked about Nick's football team before and this is going to be the first time they play this team. PLEASE come to the game if you can and spread the word and encourage others to come! We'd greatly appreciate it. I know Nick and the rest of the team would appreciate the support! Thanks!

Blessings:-)

Amy