Feeling Thankful

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!

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

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

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

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

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

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

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!

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

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"

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

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

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

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-awarene​ss-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

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)

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!!!!

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

Abilities Expo

Hi all,

Here is a link to Abilities Expo:

http://www.abilitiesexpo.com

They put on a number of events each year or "Expos" and here is a short description from their web page:

"For the last 30 years, Abilities Expo has been the one show dedicated to educating and improving the lives of Americans with disabilities, senior citizens, families, caregivers, healthcare professionals and professional therapists. It has been the nation’s foremost event for companies to demonstrate their products and services to the largest community of end-users and industry professionals."

I thought you may find this of interest and/or know someone who maybe interested . Feel free to pass this on. Thanks!

Blessings:)
Amy

Cerebral Palsy Family on Facebook

Hi all,

I've mentioned this before I believe, but we have a group on Facebook which is a link to this blog which is at:

https://www.facebook.com/groups/cerebralpalsyfamily/

Blessings:)
Amy

New Blog Address for Woodlane

Hi all,

Here is a new blog address for Woodlane (in Wood County, Ohio):

http://www.woodlaneworks.wordpress.com

http://www.facebook.com/wood.lane.works -their Facebook page

Their web site is still www.woodlane.us .

Amy

Updates February 17, 2012

Hi all,

Check out a picture of my new License Plate above. It was the best abbreviation I could get to fit because I wanted to support Special Olympics too (www.sooh.org). Obviously, the CPFAM stands for "Cerebral Palsy Family", the name of this blog and our Facebook Group linked to this blog. We are thinking about getting some abbreviation of Team Hyndman if we can when we have to renew Greg's LP this year. Nick just got his LP for his van and we didn't get a specialized number, but he did get a "handicapped" or "disabled" LP tag instead of him using the card on his rear view mirror because it was hard for him to take on and off of his rear view mirror and it was in the way while he was driving, so we opted for getting it on his License Plate instead.

We hope everyone had a lovely Valentines Day:-) Nick had classes that night so we are going out to dinner as a family for Valentines Day this weekend. We exchanged small, meaningful gifts and hope to just spend some time together this weekend.

Isabella had a band concert last night and she/they did GREAT! The kids are just busy with school and their activities (band, dance, wheelchair football, writing songs). Nick got to go to his old high school this past week and wrestle/workout with the wrestling team which he REALLY enjoyed. It means a lot to him and to us that they ask him to do this. He's gone over to work out with them and watch them several times now when he's available. It also gets him out of the house and socializing:-)

We just got a Beach Wheelchair for Nick this past week. It's much bigger than we thought! For anyone who doesn't know, if you use a wheelchair, it is next to impossible, if not impossible, to push them on the sand. If you love beaches as much as we do, this is not fun. We've always had to either carry Nick (when he was smaller), now we walk him by holding on to him on each side (it's hard for him to walk steadily on  the sand!), and then we have to carry his chair out to where we settle on the beach. In Hilton Head, they had a tarp down to push a chair on but once the tarp ended, it was the same situation to get to the beach. So, we thought we'd invest in a chair, which was about $2500, with the idea he'll have it for a LONG time and can use it whenever he wants to. BUT we realize we'll have to have a van or other way to transport it as we'd have his other wheelchair and this one to GET TO the beach, so if we'd fly somewhere, that may be a problem. It is big, but can fold, so I wonder if it would be possible and affordable to fly with it as luggage or, well, I'm not sure yet. That is why we usually drive most trips because we have Nick's wheelchair and equipment and it's just easier for us. We have flown but it's not easy with all of his stuff, his service dog, Charger, etc. Of course, we would and probably will fly again but it would just take some planning I guess. Anyhow, I'll try to get a picture of it up on the blog soon. We're STILL waiting on Nick's sports wheelchair to come in for his wheelchair football and other sports. We paid for it in early December so we are hoping it will come in soon as we are not dealing with insurance, etc., which is supposed to be what usually takes so long. We've waited up to six months in the past for insurance when we've ordered his regular wheelchairs, which by the way are the only kind insurance will pay for and they only pay for a new one every five years. Anyhow, we are excited for him to get it for football! He's really banged up his regular wheelchair, and we've had to repair it and get new wheels several times, so we are hoping this titanium chair will be a better option for getting rough and crazy like they do:-)

Nick's spring break is next month and Bella's is in April. Now that Nick's in college, the only breaks they get together is Christmas/New Years and the 2 months in the summer if Nick doesn't take any summer courses. Bella's got 6th grade camp for a week next month too.

Blessings:-)
Amy

Each Of Us Remembers

http://www.ucp.org/uploads/media_items/each-of-us-remembers-parents-of-children-with-cerebral-palsy-answer-your-questions.original.pdf

Hi all,

I read this, "Each of us Remembers", for the first time when Nick was a baby, through a lot of tears, and I couldn't finish it. Eventually, I did. I found I could relate to it and feel it, even more so as I look back now. I realize now how accurate so much of it was to my feelings and reactions. As time goes on, you are on such a roller coaster of emotions, lots of highs and lows and sometimes when you least expect them.

I thought some may appreciate this or find it comforting, helpful, etc.

Now, you can get this on United Cerebral Palsy's website, www.ucp.org, under resources, then under parents and families.

Blessings:)
Amy

The Toledo Crash Football Team

Hi all,

I've talked about the wheelchair football team Nick plays on, The Toledo Crash. For anyone on Facebook,  they have a Facebook page.

They have a website too which is at:

http://​www.the-toledo-crash-football-team.com/

Blessings:-)
Amy

Registration for Challenger Baseball Toledo Area

Hi all,
Here is an e-mail I got re: Challenger baseball / The Greater Toledo Challenger Little League for anyone who has or knows a child who would like to play and / or someone who would want to volunteer as a "buddy":

Good Friday!

Just some information to pass onto you!

Ball registration will be Saturday February 25th at the American Legion on 204 Illinois Ave in Maumee. It will be from noon til 5pm. Please remember if you help on the field with the players we will need a volunteer form completed and a copy of your drivers license. Registration is still $30. Brandon from All Wear will be there also. He will have sample shirts so you can double check the shirt size you need for you child, along with shorts for you to see and try on if necessary. Yes that is right, the kids will be receiving shorts too with their shirt and hats this year! Brandon will also be taking parent shirt orders too. Please remember for parent shirts the money is due at the time of the order.

Please let me know if you have not received your registration paperwork from your coaches yet, and I will email them to you!

Opening day picnic will be on April 22nd. The picnic will begin at 430pm and the games will start at 6pm.

Reminder bowling is this Sunday at 3pm!

Have a great weekend!
Georgianna Lanning - glanning@nbls.org


I don't have any further info. but if you have any questions or need forms, contact Georgianna Lanning at the e-mail listed. Thanks! The website is http://www.gtcll.com.

Blessings:-)
Amy

Clearwater Marine Aquarium - Clearwater, Florida

Hi all,

I know I had mentioned in a previous post that we saw the movie Dolphin Tale back when it came out in theatres. Nick said it was probably the best animal movie he'd ever seen. We LOVED it. That inspired us to take a detour on our trip to Florida for the holidays, so we spent Christmas (4 days) in Clearwater Beach, Florida so we could visit the Clearwater Marine Aquarium (CMA) featured in the movie Dolphin Tale and meet Winter, the real dolphin in the movie playing herself, whose story the movie was based on, and all of the other great animals there. We knew it was based on the true story of Winter and they filmed at CMA but we had no idea how much until we visited and watched the movie on DVD, the "Special Features" part, and they showed video of it.

First, we want to share information about the Clearwater Marine Aquarium and recommend you visit their website at http://www.seewinter.com. There's so much great info, merchandise you can purchase, information on visiting and how to donate. We have been telling everyone we know about it and telling them if they are ever in the area of Clearwater Beach, Florida or anywhere close to there, to visit CMA! It's definitely worth it. As you can tell, we were very touched by it, inspired by Winter and the other animals and the passion of the staff. This place is the real deal. They rescue, treat, and when possible release so many animals and the ones that live there cannot be released for a variety of reasons.

We get nothing for telling you about this except for the excitement and satisfaction of hoping more people will visit and/or donate so they can continue to grow and do more of what they do so well. We fell in love with the animals and were so impressed by the passion of the MANY happy and enthusiastic volunteers and staff, most of which were hired since the movie as they are now able to expand and grow from the publicity. This is a win-win situation for everyone, good for the animals, the staff and volunteers, and visitors, believe me.

We just got the DVD recently and watched it AGAIN this weekend and were talking about how much we love it, miss it, and badly want to go back. We many not be able to go soon, but believe me, we will be going back when we can some day.

We visited on December 23rd for most of the day. I had scheduled a behind the scenes tour and it was somewhat busy that day, although not too busy or too crowded at all and the tour was REALLY amazing. Next time we want to wade with the dolphins as well, get in with them. Nick, as well as the rest of us, was so inspired by Winter's story and perseverance, determination against so many odds, to go on and live life in spite of his physical challenges. Winter is not the only animal there that inspired us. We got to watch another dolphin ,Nicholas, whose sad, incredible story touched us. He was funny, we got soaked by him and loved it and he was so playful. After the show, he just kept coming up to us and turning his head and looking at us with his toy next to him, as if to say, "are you still watching me?" It was BEAUTIFUL and moving, the whole day. So, GO if you can!!!!!!!!!!!:-)
And, if you haven't seen the movie Dolphin Tale, rent it or buy it (I would buy it if you can!). Watch the Special Features as well. I got it at Amazon.com but you can get it anywhere of course.

Thumbs (and all other fingers!) up from Team Hyndman!

Blessings:-)
Amy

PS- If you can't tell, we love movies. Last night, the kids and I watched the movie "Courageous". Greg was working but we can't wait to watch it again with him. We bought it too on Amazon.com. We HIGHLY recommend it. I have never cried and laughed so hard alternatively throughout a movie as much as I did while watching this movie. It is a Christian movie but I want to say, you don't have to be of ANY specific religion or belief to appreciate, enjoy, and take a lot from this movie. I think everyone would be glad they watched it. Just our opinion, but we liked it that much and wanted to share that.

Amy, Nick, and Isabella getting ready for our behind the scenes tour at CMA

Greg, Nick, and Isabella getting ready for our behind the scenes tour at CMA

Winter

Nicholas

one of the many beautiful sea turtles

Nick talking to a volunteer and feeling one of Winter's old sleeves

Nick and Bella enjoying CMA 12/23/11

Toledo Crash and PEP Band Pics

http://www2.snapfish.com/snapfish/thumbnailshare/AlbumID=9134240013/a=131969895_131969895/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/

Hi all,

Above is a link to view pics from this weekend. Friday night, Isabella, who is in 6th grade PEP Band and plays the saxophone, got to play with the high school PEP Band at the PHS BB game. They had a pizza party beforehand, rehearsal, and then the game. She had a really fun time. She said, the high school band members were nice and that they had to "put up" with her and the other Jr. high band members. It was funny the way she said it. She is really enjoying band this year.

Yesterday, Nick had a game at The Ability Center of Greater Toledo, for the Toledo Crash. I've mentioned before how much he loves wheelchair football! We ordered a sports wheelchair, titanium, for him and it should be in soon. It will be sharp and we won't have to worry about him banging up his other wheelchair as he has numerous times:-) We hope it doesn't make him overly confident though and get "rougher". These players are competitive and love to get rough! It's both fun and scary for a mother to watch! LOL!

Blessings:)
Amy

Putting It Out There- The Risks of Sharing VS. The Rewards

Hi all,

This past week, I posted about Nick's college struggles and I knew he wouldn't be "thrilled" with me for sharing, but I felt the possibility of the rewards were worth the risk of him getting a little upset with me. Turns out, he wasn't "thrilled" but wasn't that upset either. It also turns out, the rewards I hoped for came by some of Nick's friends checking in with him, messages of encouragement and advice were sent to me (Greg and I) and to Nick, and we've had some good conversations about the whole thing. Thank you to everyone who called, e-mailed, sent messages to us. We always appreciate it so much.

The truth is, I personally believe in taking risks in life and putting myself out there. I'm ALWAYS encouraging Nick to do this (and Isabella too!) and I truly believe the rewards are worth the risk of getting hurt at times. If we don't take risks in life, share ourselves with others, we won't experience real love and friendships at all in my opinion. I didn't always feel this way and I have definitely been "burned" and hurt in life, like most people, by taking the risk of putting myself out there. I don't think we ever forget those moments. BUT, it's worth it to me and I feel I've gotten much more benefit from sharing than by not.

When talking with the kids about being afraid to take a risk, try something, put themselves out there, I always tell them to ask themselves, "What is the worst thing that can happen?" As long as they or someone else is not getting hurt, then it is usually not that bad once they think about it. They'll answer, "______ will happen", or I'll fail, or I won't be good at it, people will laugh at me, make fun of me, get mad at me, judge me, etc., on and on...................things we all think if we're honest. I tell them when they get to be my age, they just won't care so much about those things! LOL! We laugh and I'm trying to be funny but it's true:-) Really though, then I say to them, "Ok, imagine that happens. Is it that bad?" Long story short, they often (not always, but often) realize they'll be OK.

People (friends, family, others) have asked me why or how I can share such personal information with others in this blog, including my feelings which are not always "pretty". The truth is, it was hard for me at first but I am pretty blunt by nature and I've grown to be comfortable with sharing our stories of Nick's disability over the years. Nick was only about six months old when we were first asked to talk to a class of graduate students about Nick (our story) and the services he was receiving. Since then, I (and we) have spoken to more classes, groups, etc. than I can count and as you can imagine, our stories and feelings are constantly changing and evolving. From the very beginning, we were told how helpful our willingness to share these things were to others in numerous ways. They didn't mean just the facts, but often said they appreciated or were moved by us being honest about our feelings and it made them stop and think about things.  I now feel that if good things can come from sharing our struggles, triumphs, etc., then it is worth the risk of criticism and judgements by others. Maybe some people wouldn't be as comfortable "putting it all out there" or would be more restrained than I am and I respect that. Many people, however, continue to thank me,  tell me it is helpful to them to read the blog, or that they understand what we are going through,  I get useful information and advice from others, and more. The benefits far outweigh the downside to this as far as I'm concerned. And I feel, if I am not REAL about how we feel about things, and only share the "good" things, and not the challenges and reality, the benefit would not be as great. It wouldn't be the truthful. This is the reality of the journey we are on together.

I think the truth is we have a great family and great life. This involves the good and the bad. We have to have both to really appreciate life. So, even though I will not always please everyone, people won't always be happy with what I have to say, and with all of our imperfections out there for people to read about, I know it is still worth it to continue to share our life and experiences, especially related to Nick's disability. I can only hope ( I believe) we will continue to benefit from it and someone else may benefit from it too. ( I believe we will!)  To me, it's important to take that risk and I know the rewards will be worth it.

Blessings:-)
Amy

Story on Good Morning America This Morning On "Doggy Fat Camp"

http://abcnews.go.com/GMA/video/doggie-fat-camp-putting-dogs-diet-exercise-15446743#.TyHspYMJnRE.google

Hi all,
On GMA this morning, there was a cute story about Doggy Fat Camp. This is what Assistance Dogs did with Nick's service dog, Charger, this past summer and he lost a lot of weight thanks to their help!! Click on the link to watch.
Blessings:-)
Amy

A Smile As Big As The Moon - On ABC This Sunday Night, Jan. 29,2002

Hi all,

There's a movie on this Sunday night on ABC called "A Smile As Big As The Moon". I read the book years ago and loved it. It's a true story about space camp for kids with disabilities. A friend of mine from high school actually worked hard to try to organize a group of kids in our area for a similar experience and it didn't work out but she tried really hard to make it happen. That was years ago when Nick was younger. I can't remember how young, but grade school age. Anyhow, here is some info. about the movie. I hope you get to watch it and read the book!

Blessings:-)
Amy

College Freshman Struggles

Hi all,

I just had a long talk with Nick. I was on Facebook today, which I am not always on regularly because I don't have time. I do like to check up with what Nick and some of my family/friends are doing from time to time and I have a group on there that is linked to this blog. Anyhow, I discovered Nick had deactivated hi Facebook Account. To me it was a "red flag" and a sign that something was going on with him.

Now I realize that this may not seem like a big deal to you. To be honest, I have always had mixed feelings about Facebook and have monitored the kids Internet use pretty closely in general because of all of the dangers and things that exist. For Nick, however, we have come to feel that due to his physical disability and the fact that he is not and cannot always be out and about a lot, Facebook, texting, etc. has provided him with an added way to socialize with others that has made him very happy and he does spend more time than we'd like on the computer, BUT we know he is not out like most other teens so we understand it. It has helped him in a very big way. He had put a great deal of time into his pages, his songs he's written, and keeps up with his wheelchair football team and other things that way. SO, given all of that, Greg and I are a little concerned.

At first, Nick said nothing was wrong, but I know him well as his mother. He then came in and we talked. He is feeling overwhelmed by his first year at college and as a commuter ( there are MANY reasons we felt this was the best option for him right now but that's another post.....), he is not on campus meeting people. Because we don't have a personal care assistant yet, basically my Dad or Greg or I have to attend classes with him so this semester, he is taking half of his classes online which only further isolates him but due to Greg's work schedule and Isabella's schedule, etc., it was just hard for one of us to be in class with him all of the time to help him physically. These are the SAME issues we had in high school really but we don't have a para or an aide in college for him.

Nick said he feels like a lot of his friends, cousins, etc. are "too busy" for him and he is the only person that initiates contact with them. He feels they have "moved on" from him and he's just lonely. I shared with him that many college students go through this. I did for sure. But for Nick, he always has the added "disability" layer on top. That means, he has the same issues as a lot of other kids his age but he also has his physical disability which limits him and isolates him in many ways. He feels he has been making an effort to "put himself out there" but people don't reciprocate or think to contact him, ask him to go out and do things with them, etc.

As parents, this is tough to watch him go through. Really tough. We are of course going to continue this ongoing conversation with him and continue to counsel him and try to help him out. Mainly, we'll just (all three of us) BE HERE for him and I can only hope this will be a small comfort in these struggling times. I had hoped college would be a good time for him and I do believe it will in time. My initial feelings are that these are Freshman struggles with the disability layer on top and that we'll work out some of the kinks to the issues in time. We will sure try to help him in any way we can.

Any input or supportive suggestions are always welcome:-)

Please keep Nick in your prayers for us:-) Thanks!

Blessings:)
Amy

Happy 2012 From Team Hyndman

Hi all!
I knew I hadn't posted on the blog in quite some time, but when I looked and saw it was the end of October since my last post, I couldn't believe it. Time has flown by faster this past year than in any other year I can remember! I fully intended to blog more this coming year and share more information, but that didn't happen. I'm not one for New Year's resolutions. I prefer to set goals anytime, not just once a year. So, my resolution or goal or intention is to keep up with this blog more this year and do a better job at sharing good information. Hopefully, I can at least do better than last year!

We had a really great Thanksgiving, threw a great 70th birthday party for my Dad / PaPa Jagel in November, attended The Toledo Ballet's Nutcracker to see our niece Maddie perform, Isabella had a wonderful band concert playing Saxophone, Nick finished his first semester at college and did really well, we purchased a van for Nick and it's in Columbus getting modified, and we took a trip to Florida for Christmas and New Years. Those are the major highlights for Team Hyndman since the end of October.

In December, we purchased a 2012 Black Toyota Sienna for Nick. RSC (the State Vocational Rehabilitation Agency) is paying for the modifications (lift, etc.) and that is why the van is in Columbus being modified. Greg and Nick are supposed to go down on Jan. 31st. to Columbus to inspect the van, see if the modifications work for Nick, and if it is done at that time, we think we'll have it after that. We'll see.........more to come:-)

I also did not manage to get Christmas cards out this year. We were busy and we also had a lot of "bugs" going around in the family before and after our trip, so it just didn't happen. We are sending out New Years cards I had made instead this coming week and since we had such a big year of transitions and changes, I typed up a holiday letter which I haven't done in years. I am attaching a copy of it below and I'll post more later about the van and Nick's progress with college, which has been challenging for all of us. (he's doing well but we have not yet figured out the physical assistance part yet!)

Charger, Nick's service dog is back with us and doing great. As of his last weigh in he actually lost a pound and didn't gain any weight. He is having a re-certification test this week. We're not sure if he's maintained his weight over the holidays. I know we didn't feed him any bad foods but he spent a lot of time driving in the car and in our hotel room. He DID LOVE the beach! We went to Clearwater Beach over Christmas and he is a true water/beach dog! He ran like crazy and would run full speed into the waves. It was amazing to watch and he is literally the PERFECT traveling dog. He was perfect the whole trip.
Here is a copy of the letter I am sending out with our New Years cards this next week:

Happy New Year 2011 from The Hyndmans!

We hope this letter finds you well and that you had a wonderful holiday! We did not manage to get Christmas cards out as we had wanted to this year and we enjoyed the cards and letters we received so much from everyone. For us, 2011 was a year filled with some big events for our family so we wanted to write a note and tell everyone about some of the highlights, as well as let all of our friends and family know we hope you have a 2012 filled with joy, good health, and time spent with people you love!
Nick was able to wrestle again for Perrysburg High School in 2010-2011 for his senior year. He loved it! He won an award from the Ohio High School Athletic Association, “Most Courageous Athlete” Award and we were able to go to Columbus for the State Wrestling Tournaments where he received the award. He graduated from high school in June and WALKED down the aisle in the ceremony with a little help from a friend. He turned 18 in August and started college at The University of Toledo majoring in International Business. He got his driver’s license in 2010 and this year, we worked on getting him a modified van. We bought his first van, a 2012 Toyota Sienna, which is currently being modified in Columbus with a lift, etc., and we pick it up at the end of this month. He still has his service dog, Charger, and he is playing wheelchair football with The Toledo Crash (through The Ability Center). He got a power chair to use on campus this year and we just ordered him a really cool “sports” wheelchair, titanium, which he should get soon. He’s written a few songs this year and continues to write and speak on occasion. He really loves to write! So, lots of changes and transitions for Nick (and us!) this past year!
Isabella started Junior High this year and is in the 6th grade at Perrysburg Junior High School. She turned 12 this year. She is playing the saxophone in band and is on student council, which she loves. She is taking dance again this year in her 6th year at The Dance Factory (formerly JJ’s) and her 8th year of dance total. She takes tap, jazz, hip hop, and ballet and she really loves it. Her big passions are animals, animals, reading, her I- pad, and animals! She loves to take classes at the Toledo Humane Society and our vet said she can volunteer at her office if we make the arrangements, which we hope to do this year.
Both of the kids love their IPads, IPods, computers, music, and all things of the electronic age. They are WAY ahead of us! We were very fortunate this year to do some traveling too. The kids went to Chicago over the summer with their NaNa and PaPa Jagel to visit their Uncles and they got to do some really cool things there and had a GREAT time! In June, we went to Hilton Head, South Carolina for a week to celebrate Nick’s graduation with some extended family and LOVED the beaches there. Then, with all of the changes, we felt like we needed some time away, just the four of us so we went to Florida for Christmas and New Year’s. The kids said it was the “best trip of their lives” (but they say that a lot!) and we agree it was great. We spent Christmas Eve and Day on Clearwater Beach with Charger (who loved the beach!), had some awesome dinners, and the highlight was visiting the Clearwater Marine Aquarium for a day where we took a behind the scenes tour and met Winter, the dolphin from the movie Dolphin Tale (a great movie if you haven’t seen it!) and lots of other rescued animals. We can’t wait to go back there some day. We highly recommend it if you’re ever in that area! After Christmas, we went to Orlando for New Year’s where we visited Disney, Universal Studios (Harry Potter!), and SeaWorld. We also managed to swim and visit Downtown Disney a few nights where we ate at Planet Hollywood and The House of Blues and saw the movies ‘War Horse” and “We Bought a Zoo”, both EXCELLENT movies if you haven’t seen them! We had a lot of fun and did some great things but the best thing was just spending the time together. It’s our goal to get as much time in with the kids as we can now that they’re growing up and so busy!
Greg and I celebrated our 21st anniversary (29 together) and Greg’s in his 15th, almost 16th year at Northstar Bluescope Steel. I managed to publish a small article in Exceptional Parent Magazine (Sept. 2011 issue) online and I’ve been blogging still, but not as much as I should have. This year, I’d like to keep up with our family blog more and keep it updated, find some more information to share when I can. In Hilton Head (in June), I managed to get second degree burns on the balls of both of my feet on the beach (long story) and I’m still working on healing them believe it or not. Hard to heal when you actually WALK on your feet! We are back to our routines starting the new year and like everyone else, we’ve had some colds/flu, but we’re grateful for our health!
So, we had a wonderful year and are just grateful! We are hoping that 2012 is a little “less busy” (less big changes/transitions). We are sending our love and wishes for the best 2012 to all of you. Thanks for “catching up” with us.

Team Hyndman
Greg, Amy, Nick, and Isabella (Oreo, Ozzie, and Charger too!)
Visit our blog if you’d like to keep in touch: http://www.cerebralpalsyfamily.blogspot.com

Blessings:)

Amy

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