Cerebral Palsy Family

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

2012-01-27T15:57:00.000-05:00

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"

2012-01-26T19:18:00.000-05:00

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

2012-01-26T18:59:00.000-05:00

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

2012-01-23T18:44:00.000-05:00

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

2012-01-23T15:56:00.017-05:00

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

http://www2.snapfish.com/snapfish/thumbnailshare/AlbumID=9009246013/a=131969895_131969895/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/

Welcoming 2012 -- UCP's January Newsletter - Related Stories - UCP SmartBrief

2012-01-18T19:04:00.000-05:00

Welcoming 2012 -- UCP's January Newsletter - Related Stories - UCP SmartBrief - I received this from United Cerebral Palsy, www.ucp.org.

Blessings:)
Amy

Faith the Dog's Official Web Site | Hope and Love on Two Legs and Oct. 2011 Update

2011-10-30T18:26:00.001-04:00

Faith'>http://faiththedog.info/">Faith the Dog's Official Web Site Hope and Love on Two Legs

Hi all,
Check out this website for Faith, a dog who is living without his two front legs. What an inspiration and miracle!
(http://faiththedog.info) I first saw Faith this week on an episode of Oprah's Lifeclass on OWN. I'm an admitted self-help junkie but this show is for everyone. I am loving it. You can watch it on OWN or online at www.oprah.com or on Facebook but it is some the best television out there and I've learned some real things that I use each time I watch it. I tape it on the DVR so I can watch it when I have time.

Speaking of miracle dogs, Nick's service dog, Charger, is back home with us now. Thank you to Jenny Barlos and the staff at Assistance Dogs of America (www.adai.orghttp://www.adai.org">www.adai.org>) who helped us this summer with Charger to lost weight so he can be certified to work with Nick. We are obsessed now with making sure he's active every day. Unfortunately, our other two dogs, who we love to death, are older and LAZY. They'll run one lap with Charger around the yard (they're not big dogs like him!) and they quit, while Charger's just warming up. We love having him back and missed him. He's amazing and he and Nick are bonded tightly!

Life has been, well, like it is for most people, good, bad, frustrating lately. A mixture of all things.
The kids are busy with school. Nick is half way through his first semester of college and doing well and Isabella is loving 6th grade. She's in student council and loves that, playing Saxophone, joining Pep band, and taking dance. Greg is busy helping Nick, the usual things, and he's working on some special projects at work right now which he's really liking for a change. He and Nick are loving Fantasy football, going to games, etc. I've been working on healing my feet still (STILL.....such a slow process and tests my patience) and taking care of things at home and with the kids. I am wanting to go back to work once we get things settled with Nick and get him his van so he can get himself to and from school and we have someone to help him with personal care things at school.

We were told about three weeks ago that there is another delay with getting Nick's van at the State of Ohio level (RSC, the Rehabilitation Services Commission, or state vocational rehabilitation agency). Basically, the short version is that we were told there is a delay getting the funding for the modifications for Nick's van (we are buying him a brand new van and the State agreed to pay for the modifications, about $24, 000.oo). We think that is a lot of money and are glad they are willing to help so we knew going in we'd have alot of paperwork and waiting and we'd have to jump through the usual bureaucratic hoops one does when asking for services. We were told that we could "complain or appeal" about the additional possible SIX MONTH delay but if we do, that will just delay the process even further. That is what we were told. So, of course, we don't want it delayed even further as it is putting Nick and us in a real "hold" ourselves and a bind, so we can't "complain" or appeal this. We think this is terrible, and words I can't or shouldn't use in this blog. We're so angry/upset at this and the fact that there is literally no accountability or good customer service at these agencies at the state level in our opinion. Basically, it's made known, if you want help and want services, this is just what you have to put up with. Forget what it does to your life while you wait, they don't care at all. So, needless to say, it's frustrating. We're trying just go keep going and do what we have to do each day to get Nick to school and help him. He should be in school right now and this is the right thing for us to do and we'll do what we can to make that happen for him. At some point, now that he's an adult, he should be able to access the services that adults with disabilities can access. The reason he's eligible or these services at all (besides we pay taxes like everyone else) is that he has a disability and wants to, intends to work and contribute to society. He plans to and is getting a college degree so he can work. He just needs some extra things due to his disability to make that possible, such as a van with a lift so he can get his power wheelchair to and from school and eventually to and from a job. So, we applied for services and are waiting. If we can get help with $24000 worth of modifications he needs for the van lift, etc., we'll do what we have to do to get it for him so he can go to college, work, get to and from places he wants to/needs to go.

Nick just got over being sick. He was pretty sick for a couple of weeks. We also just got him fitted for a sports wheelchair, a quad-rugby chair, made for wheelchair court sports like football, basketball, quad rugby. Nick is still practicing with the Toledo Crash football team at The Ability Center of Greater Toledo. We're just waiting on a quote for the chair. Insurance won't pay for this chair, but we feel he needs it to participate in sports and is worth it. We were laughing about the fact we may need a shed just to keep his "wheels". He'll have his sports chair, his power wheelchair, his regular manual wheelchair, his Segway, his walker, and his Paralympic hand-peddled bike! That's quite a collection! Then he'll have a brand new van with a lift. This should give people an idea of the expenses people with disabilities have to participate in the world. I have to add of course all of the hearing aids and supplies for that which insurance does NOT cover, because it is not medically necessary to hear of course;) Sometimes I just want to educate people, not to complain, but so they are aware of the stresses that families have. These are things most people don't talk about because we don't talk about money and who wants to think about it all the time? (not us!) But, it's just the reality.

We are really needing some family time alone so we are going to Florida for the holiday break. Nick and Bella only get 2 weeks at Christmas (Nick get a month and Bella gets 2 weeks) and the summer off together now. Their spring breaks are at totally different times. So, family time is limited to those times for vacations and Nick can't take extreme heat in summer, so that limits where we can go if we go on vacation in the summer. We're going to spend Christmas in Clearwater on the beach (even if it's cold, we love the beach!) and plan to go see the dolphin from the movie Dolphin Tale at the aquarium there. Then we're going to Orlando for New Years and plan to check out the Harry Potter theme park, Seaworld, and Disney Epcott (and maybe one other park). We've been to all the Disney Parks and Universal Studios four times now so we wanted to go the parks we haven't been to at all or much. We love Disney and Universal and will never be too old for it. We're always just happy when we're there! We're really looking forward to it.

Isabella is going to be a "Cowgirl" for Halloween tomorrow. We've had a great three day weekend together. Nick doesn't have Friday classes this semester, Bella had Friday off of school (not sure why-a planned day) and Greg took Friday off. We saw the movie 50/50 with our parents this weekend and loved it! We watched some scary movies and carved pumpkins. We're so glad the kids still love to spend time with us and as a family. We NEED it. When things get crazy, we just crave time together to remind ourselves that "everything is OKAY!" We hope everyone has a safe and fun Halloween!

One final thing....thank you to the people who read this blog and send us encouraging messages. We really love and appreciate the comments, e-mails, etc. :)))))

Blessings:)

Amy

Building Inclusive Communities Video Includes Nick Hyndman

2011-10-11T15:25:00.000-04:00

http://youtu.be/PA0rUsFv8xQ

Hi all,

Nick is included in this video by The Ability Center of Greater Toledo.

Blessings:)
Amy

Special Announcement for Northwest Ohio

2011-10-11T14:32:00.000-04:00

Hi all,

I received an e-mail today, as Nick is a graduate of Assistance Dogs of America where he received his service dog, Charger. The announcement is of a partnership for the Northwest Ohio area with The Ability Center of Greater Toledo and Assistance Dogs of America. Here is a copy of the e-mail I received:

Dear ADAI Graduate,

We thank you for your continued support and involvement with Assistance Dogs and we have an exciting update to share.

October 9, The Ability Center of Greater Toledo and Assistance Dogs shared an important announcement. The two organizations, with long compatible missions, are forming a strategic partnership to better meet the needs of the disability community. This partnership allows the organizations to:

Ø Create greater operational efficiency by eliminating duplication of functions

Ø Train more dogs to serve a greater number of people

Ø Increase public awareness about the possibilities and value of full accessibility for all

Ø Promote internal discussion and planning about new kinds of service and delivery

Under the new collaboration, Assistance Dogs becomes a dedicated program of the Ability Center and will move its headquarters to the Ability Center campus on Monroe Street in Sylvania next spring. Private funding is being sought to renovate the Ability Center’s current Housing Resource Center for that purpose. The resource center will be relocated to a new facility on the Ability Center Campus on Skelly Road in Sylvania.

Although some things are changing, ADAI graduates will continue to receive the same level of dedicated support, advice and additional training from the Assistance Dogs staff. In fact, our new facility will be fully accessible (and have two accessible bathrooms in the facility!) with more room for brush-up classes and plenty of parking for visiting graduates and their dogs.

Financial gifts will continue to be made payable to Assistance Dogs. All gifts will be designated according to your wishes.

Governance of Assistance Dogs will transfer to the Ability Center Board of Directors this month and ten current staff members of Assistance Dogs will become Ability Center employees. Assistance Dogs board members will continue to play a critical role in this transition, serving for the next year as an Advisory Council.

This is truly an exciting time for both organizations and we’re pleased to share this news with you. Should you have any questions, please don’t hesitate to contact me at 419-825-3622, ext. 224 or Jenny Barlos at 419-825-3622, ext 236.

Sincerely,

Jan Brown,
Program Director
Assistance Dogs
See this link for another story:

http://www.toledoblade.com/local/2011/10/09/Local-agencies-for-assistance-disabled-link-up.html

Jan Fought Brown
Director
Assistance Dogs
8806 State Route 64
Swanton. OH 43558
419-825-3622 ext 224
Assistance Dogs is a program of The Ability Center

Isabella's 12th Birthday and New Updates

2011-09-23T14:46:00.000-04:00

Hi all,

Happy Birthday to our Isabella Grace, who turned 12 last week!

I know, I know, I know........I've been a bad blogger and facebooker (my friends make sure to remind me:) ) the past few months. I have no excuses but the truth is that this year, especially this past six months, has been one of the craziest, busiest times I can remember in years with Nick's graduating, turning 18, and all if the disability stuff/transition stuff that we have to take care of to get him settled into college with the services be needs. I started working on all of this back in March but apparently, that wasn't soon enough.

Let me go back first to say that Isabella is loving Jr. High and the 6th grade, playing the saxophone this year, in student council, and dance. She had the best idea for her birthday. She wanted the family to go out to Port Clinton/Marblehead at the Lighthouse on the water for a picnic. So we did and it was the PERFECT day. The weather was perfect, we had great food and a lot of fun by the water and hanging out with family! We then topped it off with ice cream on the way home and she said it was a perfect day.

Nick is loving college by the way, the freedom of it, and he is "kicking butt and taking names" with his grades so far! We have note takers now for each class. The downsides are, the modified van won't be ready this semester, but we hope by December so we have it for next semester. This is due to Red Tape by RSC/The State of Ohio and nothing ever happens quickly I guess. Anyhow, we feel like we just have to be grateful for their assistance so we can't complain. The issue is, without it, Nick can't get his power chair to and from school or drive himself there, so we need to take him to and from school every day. Not only that, but we don't have a PCA (Personal Care Assistant) to help him with personal care tasks (lunch, restroom, lots of other little things people wouldn't imagine unless they had his disability) so we have to stay with him the entire time he's there, which will probably be the case this entire semester. We had no idea we would be in this place, but we are, so we are a "team" and we're doing what we have to do so Nick can attend college this semester, until we can get all of his services in place. We're so busy doing this, and Greg's work and the usual family/house obligations as well, Isabella's activities, that it's hard to get it all done. The best way to put it is, we are in "survival mode" or "day to day mode". We're working on it. (the van, the PCA, social security, adult services for Nick, all of it.....and have been for the past six months) Hopefully, by the end of the year, we'll have some of these things taken care of finally so Nick can be more independent. It's been a lot for us, but we're happy to do it, it's just hard right now. I'm still trying to heal the second degree burns on my feet I got on the beach in June in Hilton Head. I'm going to the wound care clinic every two weeks and they are about half way healed. It takes longer than I thought and because the burns are on the balls of my feet, where you walk, and I can't be off my feet right now, it's just taking longer. My Dad's been helping us too a couple of days a week.

I am behind on everything! (pictures, paperwork for Nick, house projects and just cleaning in general, and yes, blogging!) If we can just take care of Bella and Nick at this point and do what has to be done, we feel like we're doing pretty well! We've always been a busy family but this period of time has, by far, been busier than any period I can remember in recent years. I'm still committed to this blog and the purpose behind it. I have a lot of ideas and plans for it, I just have to have the time to catch up and then get going on them. And, I WILL get pics up soon! Did I mention that we've had our TWO computers CRASH (first one, then the other) in the past two months??????????? The ones with our pictures on them? We've got our pics up on snapfish but I haven't had time to do anything with them yet. We have two new laptops now finally.

Also, I wanted to say, Nick's party (graduation/18th b-day) was SO fun and a great success. We had the best time with our family and friends and with all of the people who were there to support Nick and us all of these years and that day. THANK you to everyone for making that a special day for Nick and us! There is nothing better than being with family and friends and there were people there who worked with Nick when he was little, up until this year. It was great! We have had a great team of professionals over the years to support us. Now we have to focus on getting services in place and a new team of professionals to support Nick as an adult.

I also had my first article published this month! In Exceptional Parent Magazine, September 2011 issue. The magazine has been one of our favorites since Nick was a baby and for the past few years, it's been available online only, not in hard print, as many magazines in this economy. Anyhow, I was contacted by the Editor-in Chief a few months ago and the article was published this month. I'll try to get that on there too. I'm having trouble with the link to it, getting it on blogger, so I'll need Greg's help to figure it out. (www.eparent.com)

Finally, I want to say that my husband, Greg, is the "Dad of the year" in my opinion! He has worked so hard for our family and works a 12-hour swing shift. He usually works 3 days one week and 4 days another, and although he has to work every other weekend and some holidays, his schedule has been GREAT for the family as he can be there for a lot of things for the kids. He has to occasionally work overtime to cover vacations or time off, but most of the time, it's three days one week and four days another. He's going to school part time to finish his degree and has been off and on for years as he has always put us first. If it weren't for Greg, Nick would not be able to go to school right now, because we don't have a modified van or PCA. He spends all of his days off during the week taking Nick as my feet have second degree burns. He never complains and he's always here for our important things when we need him. He's a true family man, and the best Dad I've ever witnessed. He does everything with the kids and I, the day to day hard stuff, the fun stuff, all of it. I think he deserves some recognition for having his priorities straight. I don't know how our family would survive and thrive without him. We love you Greg / Dad!

Until next time........(and I'll make sure it's not so long!)

Blessings:)
Amy

Useful Info. In Columbus Dispatch

2011-08-22T15:06:00.000-04:00

Hi all,
A contact forwarded this info. to me and I thought a lot of people / parents may find this of interest and hopefully useful. Please share this information with anyone you know who may be interested. Thank you!

Blessings:)
Amy

FBI app to ID kids has parents’ thumbs-up

Free cellphone aid stores photos, more in case of emergency

By Stephanie Czekalinski
The Columbus Dispatch Sunday August 21, 2011 7:08 AM

The FBI introduced a smartphone application this month to help parents and law-enforcement agencies find a child who disappears.

The application stores basic information — photo, a physical description and contact information — on iPhones and iPads, making it possible for parents to quickly email that information to police, friends and relatives in an emergency.

“This is handy,” said Renee Crighton, 32, who reviewed the app at Cafe Brioso Downtown last week while her 4-year-old son had a cookie and a glass of milk.

Having the information on your phone makes it more accessible if your child disappears while you’re out with him or her — for example, in a crowded shopping mall. You wouldn’t have to run home to get a photo, Crighton pointed out.

That was the FBI’s goal when it decided to create the app, said FBI spokesman Paul Bresson.

The app takes the CDs and folders that parents have been using for years to store pictures, physical descriptions, fingerprints and DNA a step further, he said.

It also includes advice for families on what to do in the first hours after a child disappears.

The information is housed on the phone only and cannot be shared with other devices, and the FBI cannot access the information remotely, Bresson said. “It doesn’t leave the phone unless you email it.”

The app isn’t a replacement for the childID kits that some parents keep at home, with fingerprints and DNA samples, said Kenny Hansmire, executive director of the National Child Identification Program. The program has provided 30 million kits since 1998 in a partnership with the American Football Coaches Association and the FBI, he said.

The app can’t store fingerprints or DNA samples.

Fingerprints and DNA don’t change over time, but children grow and can change a lot in a short time, Hansmire said, so parents should update their physical descriptions every six months in both the kits and on their phones.

Crighton, who lives in Akron, keeps a packet with her son’s fingerprints at home, but she said she’ll download the app when one becomes available for her cellphone. It would give her peace of mind, she said, to have the basic information that law-enforcement agencies would need if her son disappeared.

The app is available only for iPhones and iPads, but the FBI said there are plans to develop it soon for other mobile devices.

Parents and others can download the app free from the app store on iTunes.

sczekalinski@dispatch.com

Happy 18th Birthday Nick!

2011-08-18T19:16:00.000-04:00

Hi all,

Today Team Hyndman is celebrating Nick's 18th birthday! We are so grateful for the day he was born, his life, and he is the best son anyone could ever ask for (and big brother!). Happy 18th Birthday Nick! We can't wait to see what you do next.

We are having a party to celebrate Nick's 18th birthday, graduation, and starting college this Saturday and can't wait to see our family and friends! There are so many of you who have been there for us from the beginning and are always there for us and we're grateful!

Nick starts at The University of Toledo on Monday August 22nd. We've had a lot of "bumps in the road" and some things are still being worked on but we are hoping he gets off to a great start. I PROMISE to update the blog after we get Nick and Isabella settled into school next week. I have so much to post about that has been going on with us and also, I'm learning so much information about college for individuals with disabilities that I want to share and will. So, until then, we'll be busy celebrating and getting the kids started in school. Isabella had her orientation for Jr. High this week and starts 6th grade at the Jr. High next week too! She was nervous about her locker, getting to classes, the bigger building, all normal things kids worry about. We practiced and she was able to do it all like a pro! We're so excited for her and Nick both!

Blessings:)
Amy

War Eagle Arkansas-Great Movie

2011-07-28T15:27:00.000-04:00

Hi all,

I know, it's been too long and I have SO much to update everyone on. It's been a busy summer and we've had SO much happening. I will post with updates SOON, I promise, when I have more time to make sure I don't forget anything. I'll just say we've been getting Nick ready for college (now he will be attending The University of Toledo, which I'll explain in my upcoming post), getting all of his (and our) medical,etc. appts. in, working on getting that lift van finally, and doing some summer fun stuff as well. More on that later......

We watched this movie last night I bought on www.Amazon.com called "War Eagle Arkansas" which we thought was funny and touching. It's based on a true story between a young man with cerebral palsy and his friend (who stutters). We loved it! Our only complaint was it lacked subtitles or closed captioning, which we use ALL of the time now on all of our TVs and movies because Nick is also hearing impaired and in fact, his hearing has dropped. (it was mild-moderate loss in both ears and it is now moderate-severe in both ears) We've all become attached to closed captioning and use it even when Nick is not with us because you don't realize how much you miss otherwise at times! Anyhow, we hope you rent or buy this movie and watch it. There is bad language in it for those of you with young kids but the story outweighs any of that in our opinion and we had no problem letting Isabella watch it with us too as we know she knows better than to use that language! (just FYI for those who may have an issue with it!)

Blessings:)
Amy

New Book ; Freedom by Nancy Douglas

2011-06-24T11:24:00.000-04:00

Hi all,

This book review on this new book was on Cerebral Palsy Family on Facebook and I wanted to share it. I can't wait to get the book and read it from www.amazon.com. Here is the info:

"Nancy Douglas
Book Review: "I absolutely loved this book and recommend it not only to parents of children with disabilities, but to all who would like to know how to remain faithful to God through tremendous adversity.
Nancy gives the reader a brutally honest glimpse of her life and her faith journey. I read it in an afternoon. You will too!" - Laura, Lafayette, California (5 out of 5 stars)
As low as $12.95
http://www.amazon.com/Freedom-Nancy-Douglas/dp/0615188222/ref=ntt_at_ep_dpt_1

Freedom
www.amazon.com
In the pages of Freedom, Nancy Douglas candidly shares the pain, grief, and trials of having a disabled child. From the initial storm of discovering her daughter was Autistic, deaf, and Failure to Thrive, to the agony of knowing she would never receive physically healing, her compelling and hone.....
Amy Parks-Jagel Hyndman thank you Nancy! I can't wait to read it!"

This is where the message ended but I'd go to Amazon.com to read the rest!
Blessings:)
Amy

Cerebral Palsy Fundraiser Info.

2011-06-23T16:53:00.000-04:00

Hi all,

The message below was posted to Cerebral Palsy Family on Facebook by Chuck Rogers on 6/23 @ 1:33 pm. I thought I'd share it in case anyone is interested and please pass this information on to anyone who may be interested. Thank you! Here it is:

"Just a quick reminder that next week starts the Midnight Moonlight Ranch Cerebral Palsy fund raiser concert with free camping and fireworks in Rogers /Lisbon Ohio june 30th till July 5th in honor of Rain Marie. For ticket or campground info please google Midnight moonlight ranch or call 216-702-7889 thanks for your support"

Blessings:)
Amy

This And That

2011-06-08T16:35:00.000-04:00

Hi all! I posted a couple of pictures above of Nick's new power wheelchair. This chair came in RECORD time! We ordered it only in March and we already got it! That has never happened to us before. It has taken about 6 months in the past to get chairs! National Seating and Mobility did a great job! Thank you! So, watch out! The only thing is, it is so big and heavy, it has taken two men to get it in and out of our van. I can't even do it with Greg's help, so at this time, Nick will not be able to use it unless Greg and another strong person is available to get it in and out of the van. We purchased a portable ramps, but it is so unsteady and not very easy to get it to work as our van roof is not high enough or the floor is not low enough, so it was just a reminder to us how important it is for us to get Nick a van with a lift before school starts or we don't know how he'll be able to get to and from school. We may have to take him and stay with him to push him to and from classes until we get the lift van. That's our first thought, but we'll see how things pan out and will keep you updated!

We got this chair with college in mind, thinking Nick would be able to get around on campus much easier and not have to have someone push him, and it would be faster so he could get to classes, etc. on time. Most people (and their families) who are wheelchair users know you take extra time to load, unload everywhere you go and it just takes more time to get around in general most of the time! We thought this chair would help. Even though Nick can propel a chair on his own or be pushed, we had to think of what was the most important thing in this case, Nick being independent and pushing himself or have someone push him (in which case we'd need to make sure someone was always with him, which is not realistic) OR getting to class easily and on time and concentrating his energies on THAT. So, we chose the latter! Nick understands this concept. I mean, he understands that sometimes, even though he CAN do man things without help, it usually is a struggle, takes him much longer, and takes a lot of physical energy, so for him to "keep up" the pace with others, he has to use help at times so he can live the life he wants to live. We had to address this with him when he was very young because he wanted to do EVERYTHING on his own and was so determined, yet he needed help at school, for example, to take notes and write for him (a scribe) because it took him a lot of time and energy and he couldn't keep up with the classes pace. As he got older and matured, he accepted this and understood it was not a reflection on his abilities at all. Most people don't know that in Nick's case (and for other individuals with physical disabilities), it takes 2-3 times as much energy to do anything we do normally. We were told this by a specialist when Nick was very young. It's true too. So, to get out of bed, hold his head up straight all day, sit up straight, anything at all, it takes a lot more effort and energy. When Nick gets home from school for example, there have been many days when he literally can't hold his head up and is just exhausted. (more days than not) This is just the "norm" for us. We know this about him, are used to it, know how to deal with it, etc. I think, however, that most people don't even realize this when they look at Nick because he's so capable and doesn't complain and is just out there living life to the fullest, but it takes a lot out of him. He wouldn't want things any other way though because he wants to live a full, active, fun life. So, we do what we can to help him reach those goals! Part of that for me is trying to make people "aware" and understand Nick and disability more. I love educating people and sharing information because I think when we understand and learn about people, there are positive outcomes for everyone.

I didn't mention yet, we were able to get American Idol Live concert tickets in Detroit in August. I was on the computer as they went on sale and was able to get great seats! We love American Idol and have watched it as a family most seasons for years but we all thought this year was the BEST season ever! We LOVED the new judges (not that we didn't like Simon, we did, but these judges just gave it new life!) and the talent was better overall than any year we can remember. So,we're so excited to go as a family to see it Live!

We are counting down the days not to our vacation and are looking forward to Hilton Head and Savannah, the beach, the pool, being with our parents and family, just "relaxing" in our beach house and going to Paula Deen's restaurant, which is something my Mom and Greg's Mom really wanted to do so we're excited to do it when we visit Savannah for the day.

Lastly, we are missing Charger so much although he's in very good hands! I've written before about his weight problem. He can't be certified (he's had a temporary certification) until he loses the weight and we have not done a very good job at making that happen for a lot of reasons (none of them excuses but just our circumstances). So, we did not want all of the hard work and time/money put into training Charger for two years to go to waste and we want him to be able to be out with and help Nick, still work of course. We got a call from the client services director at ADAI and they offered to help us and we are so grateful. So, we jokingly call it "fat camp" (in an effort to laugh instead of cry). He's out at ADAI working with their trained staff and other dogs who are losing weight as well, under supervision, to safely lose the weight. We are so grateful and appreciative and know he's in great hands and being cared for really well! BUT, we MISS him so much it hurts! Believe me, we know we don't want to go through this again so we have to make sure he gets enough exercise when he comes home in a few months. We'll be able to and will visit him. Nick and Greg and taking it very well and "rationally". Isabella and I have been crying a lot when we think of him, more emotional, and we don't want him to think we abandoned him. Well, this is a real gift and we're grateful! Charger IS a part of our family. He's an excellent and smart working dog AND a big "baby" when he's "off the clock" and just hanging out with the family and our other two dogs. All four of us could use more activity and exercise so we hope to step it up for all of us!

That's the latest in the Hyndman home and we'll be writing about our vacation and college planning more after our vacation.

Oh, one more important thing I want bring up! Regarding my last post, I received a phone call from the Superintendent of the program I mentioned in my post and she explained how the van comment was brought up, why it was asked about, and the intention behind it, which was only good intention and was a great relief to me. I am grateful she reached out to me and explained it and it made a lot of sense. They do really want to make sure Nick gets what he needs and if they are not able to fund it, they want to figure out who can help us with this. They understand the expense of a modified vehicle and Nick's need for it! So, I wanted to say it had a good ending! Good communication is so important which is what this situation reminded me!:-)

Blessings:)

Amy

Tuned In and Tapped Out

2011-06-02T15:29:00.000-04:00

Hi all,

I'll start by saying this post is being written out of a bit of frustration but not too much ;-) To begin, I'm grateful that anyone at all reads our blog and we hope to reach more people. The fact that anyone cares what we have to say amazes me. My reasons for writing this blog have never changed and I know I've talked about them in previous posts, so I won't write all of that again. So,I don't regret any outcomes or repercussions of it because I know when we decided to share our story/blog, people have the right to form opinions (of course!) and make judgements. That happens I know, and it may momentarily frustrate us at times, but it's OK! Everyone has a right to their opinions just as we do and we are blogging for only good reasons.

It was shared with me that administrators of one of the programs we are seeking services from for Nick read our blog, which is great! I want to clarify however, that we didn't say ( I didn't write) that any organization was going to "buy us a van" or pay for all of our expenses or anything else. We just wrote about the fact we need a wheelchair lift van for Nick for Nick to be able to go to college and use his power chair ANYWHERE, not just at college, and we wrote about the quote we got from one vendor. I said that the Bridges To Transition Program is helping us because we were told that, which doesn't mean they will pay for everything. That is not our expectation. I want to be able to write about what is happening with Nick and a large part of that is the services he receives and all of the steps we have to take to get what he needs. Over the last 17 1/2 years, we've spent A LOT of time, effort, and our own money to make sure Nick has what he needs.

After a family like ours gets to the stage we are at, where Nick is going to be 18 this year, at least for us (I'll speak for us!), we are TAPPED OUT and we need help. We have no more resources and as I've had to be off work often to be available for Nick, we don't always have two incomes in our family. (I've worked off and on sporadically as our family situation permits it and depending on Nick's needs!) We've been told we should just take care of things on our own at times. We HAVE done that MANY times. We've used all of our resources, money, and lots of our time to purchase things insurance does not cover, go to therapies, take time off work for therapy, surgery, and we've gotten lots of equipment. So, we ARE going to seek whatever help Nick qualifies for to pay for his college, van with a lift, whatever else he needs. We aren't asking for anything he doesn't qualify for. Greg and I pay our taxes like everyone else and we've done things pretty much on our own for 17 1/2 years. ( We haven't had a lot of help other than family resources from our local board of dd. That's it!) We don't feel guilty for asking for help and it doesn't mean we don't care for Nick well and it doesn't mean we haven't spent years doing things on our own. We have. We are tapped out! We're still great parents. We'll always be a part of Nick's life, involved, here when he needs us, and we'll always do what we can for him and Isabella.

So, if I could say one thing right now to readers of our blog, I'd say, you may have a right to judge us and say things about us but we don't appreciate it. If anyone has any concerns, questions, opinions, we'd be happy to sit down with you and discuss things face to face. Thank you for tuning in and I hope you continue to do so! You may find out we're good people and a great family.

Blessings :-)
Amy

Graduation and Fifth Grade Recognition

2011-06-02T14:54:00.000-04:00

Hi all,

I have so much I want to write about but I wanted to write about Nick's graduation and Isabella's Fifth Grade Recognition (graduation from elementary school into Jr. High) in a separate post because these events have been the highlight of our month here in our family.

Nick's graduation from Perrysburg High School was Sunday, the same day as Greg's birthday. It was a beautiful ceremony really, great speeches, etc. at The Stranahan. Nick walked (not rolled) hand in hand with another student down the aisle and on to the stage. I didn't "bawl" or cry my eyes out, I was really just so excited and happy for Nick. I did, however, get a little choked up when I saw him enter the theatre, standing up and walking, and hearing pomp and circumstance, yes, then I cried a happy cry! Then Nick walked across the stage to accept his diploma and the audience was asked not to clap or yell out so that everyone could hear their name, have their moment, etc. When Nick started walking, someone ( I was told by someone later, it was the students) started clapping and Nick got quite an ovation from everyone. It was a huge shock and very touching. We had 20 people there for Nick. Afterwards, we had the nicest dinner with our close family at Mancy's Italian and we celebrated Nick's graduation and Greg's birthday. It was really just a perfect day. Nick and Bella ended up conning PaPa and NaNa Jagel into spending the night at their house with their cousins and the next morning, Memorial Day, they attended a memorial ceremony at the cemetery where our Gran and Go-Go are buried and they helped with planting and weeding, cleaning up the grave area and Bella and our niece Maddie helped our Uncle Frank and Aunt Marcia with their family grave sites too while they were there. Greg and I thought that was very important and special for the kids to experience.

Yesterday, Isabella had her Fifth grade recognition ceremony and little class party afterwards. She received six awards and a letter from President Obama, which is her favorite I think. We could tell she felt good about that and it meant a lot to her. They also had "silly awards" in their class for which the class voted and Isabella got "best dancer", which was cute. Afterwards they had cupcakes, cookies, signed yearbooks, etc. Tomorrow, Friday, is their last day and they are visiting the Jr. High for the day and having lunch there. Hard to believe she'll be in Jr. High next year already!

So,Greg and I are of course really proud of and happy for Nick and Isabella. It's still really "sinking in" and we're still going over Sunday in our minds trying to process and remember every detail. I think that's because it was a lot of work for Nick, and to be truthful, for us too, although we wouldn't change that and it was all worth it. I keep remembering the meetings in which people questioned if/when this day would happen and if Nick would go to college. I know we have a lot of details to work on and figure out this summer to get Nick started in college, but we know it will happen. 100%. No doubt.
These events were the highlight of our week, month, and year I'd say! Yeah Nick and Bella! :-)

Blessings:)

Amy

Article on Nick in Spring 2011 OHSAA Magazine

2011-05-27T12:07:00.001-04:00

https://acrobat.com/#d=XRp8*-f38W8ZSyEUi1hXig -

Hi everyone,

The Ohio High School Athletic Association (OHSAA), www.ohsaa.org , published its Spring 2011 Magazine with an article on Nick. It can be viewed on their web site or by clicking the link above. A great article:)

Blessings:)
Amy

R-Word - Spread The Word To End The Word

2011-05-27T09:49:00.002-04:00

Hi all,

http://www.r-word.org/r-word-not-acceptable-psa.aspx?tr=y&amp%3Bauid=8390770

We saw this GREAT Public Service Announcement while watching one of our favorite TV shows this week, GLEE on Fox. Hard to believe people are so ignorant that they don't "get this", it's like basic manners and "being a decent person" to me, but I am so glad they have this campaign because there is just NO good excuse or reason for this and I agree, it's not acceptable in any way. Pass this on!
Blessings:)
Amy

PS- I found a lot of great information at www.r-word.org including the following which I found very on point (under "resources" on the web page):

"Spread the Word to End the Word
Action Kit

KEY MESSAGES AND TALKING POINTS

It is time we Spread the Word to End the Word™ and build awareness for society to stop and think about its’ use of the R-word. That R-word is something hurtful and painful – “retard” or “retarded.” Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual and developmental disabilities, their families and friends. The R-word is just as cruel and offensive as any other slur. Visit www.r-word.org to make your pledge today.

· Young people around the world are taking a stand and raising awareness of the dehumanizing and hurtful effects of the words “retard” or “retarded” and are helping encourage others to think before they speak.

· Did you know the pejorative and ever increasing use of the R-word in today’s society further perpetuates the stigma and negative stereotypes that face people with intellectual disabilities?

· Up to three percent of the world’s population have intellectual disabilities - that’s 200 million people around the world. It’s the largest disability population in the world, perhaps you know someone?

· We ask that you help us change the conversation and help eliminate the demeaning use of the R-word from today’s popular youth vernacular and replace it with “respect.” We are asking for your help in creating a more accepting world for people with intellectual and developmental disabilities and all those people that may appear different, but have unique gifts and talents to share with the world.

· We’re asking every person - young and old - to help eliminate the demeaning use of the R-word–a common taunt used to make fun of others. Often unwittingly, the word is used to denote behavior that is clumsy, hapless, and even hopeless. But whether intentional or not, the word conjures up a painful stereotype of people with intellectual and developmental disabilities. It hurts. Even if you don’t mean it that way.

· People with intellectual and developmental disabilities are capable and enjoy sharing life experiences – listening to music, playing video games, watching the latest movies, and yes, having fun – as well as working together toward athletic excellence and mutually enriching one-to-one friendships as demonstrated constantly through Special Olympics and Best Buddies International. They can attend school, work, drive cars, get married, participate in decisions that affect them, and contribute to society in many ways.

· Special Olympics’ Multi-National Public Opinion Study of Attitudes toward People with Intellectual Disabilities, conducted by Gallup, reveals that throughout the world, over 60 percent of people still believe that people with intellectual disabilities should be segregated in schools and in the workplace. This is intolerable. We need massive attitude change now to attack and reverse the stigma that is destructive to the lives of people with intellectual disabilities and a barrier to growth.

· Did you know that by casually using the word “retard(ed)” to refer to an action as less than ideal you are making someone with an intellectual disability feel less than human - whether you mean to or not? Demeaning any of our fellow human beings by using inappropriate words toward any population negatively impacts all of us." (www.r-word.org under "Resources")

We Are Still Here !

2011-05-18T14:20:00.000-04:00

Hi all!

We are still here! I know it's been some time since my last post. Please bare with us. This is the busiest time and there is so much going on in the Hyndman household and our lives.

Some highlights since my last post...........

Nick received his award from the Ohio High School Athletic Association (OHSAA) that I mentioned in my last post. It was a very nice ceremony at the high school for seniors and the athletic director gave a wonderful presentation before Nick's award that moved many to tears. Nick received a standing ovation. :-) Nick is now in his last full week of high school! Next week, he has senior exams and picnic and his last full day is Wed. He'll have rehearsal for graduation Friday morning and his graduation ceremony is Sunday May 29th! We have his cap and gown. It's going to be a happy and emotional day and we're planning a nice dinner for family at Mancy's Italian afterwards.
Bella had her violin concert and it was beautiful. She also played the violin in her school talent show. This week is busy with extra practices/rehearsal and her dance recital is this Saturday. She has three dances and a five year dance for the finale as she has been at this dance studio for five years this year. (she was at another studio before that for a few years and before that she took preschool ballet at the YMCA) She loves dance! Right now, hip hop is her favorite. (this changes from time to time!) Greg participated in Bella's school career day last week and was one of several presenters talking to the kids about what he does at his work. Bella was his assistant for one of the sessions. It was so cute and I love that he did it. Bella's last day of school is the week of Memorial Day.

We've had other family events lately (birthdays, Mother's Day, etc.) and we're so excited for our upcoming trip to celebrate Nick's graduation. We are going to Hilton Head, SC and we rented a large beach house and our extended family is joining us. We also plan to visit Savannah, GA for a day and who knows what else. We need some relaxation time in the sun and on the beach!

We're also dealing with a few challenges which I don't wish to get into at this time but I will post about it soon when I have more time and clarity.

One final thing, we get Nick's new power chair tomorrow, which we ordered for him to make it easier to get around campus (and faster and safer) next year. We now just need to get a van with a lift for Nick which we're working on and we're going to need help from the Bridges to Transition Program to pay for the modifications which are actually $24,000 (just for the modifications, we were originally told maybe $8000-$12000, but it's actually$24000), on top of the cost of the van. The modifications cost as much as the van! To get this help, it can take months and there are a lot if steps involved and we are now waiting to hear from an "expert" that has to come to do an assessment from New York. We're hoping he calls soon. We're worried we won't get the van in time for college and if we don't, he won't be able to use his power chair. It's too heavy to lift ( a couple hundred pounds and large), so we're trying to figure out a back up plan in case. Anyhow, we have to believe it will all work out. Greg and I know we have to be flexible, take things from week to week and go with the flow because we might have to revise our plans at the last minute. It's so stressful for me but it is just the way it is. i DO believe it will all work out!

I'll try to post with updates soon and after graduation, I'll post some new pictures.

Blessings:)
Amy

Nick Wins Award From OHSAA

2011-04-20T18:50:00.000-04:00

Hi all,

Today we received a letter and I'll just share what it said:

To: Nick Hyndman
Re: Ohio High School Athletic Association Courageous Student Award

Congratulations on being nominated and selected as the recipient of the 2010-2011 OHSAA "Courageous Student Award". You are to be commended for the turnaround you have experienced here at Perrysburg High School. You have overcome adversity with your perseverance and dedication to achieve success. Please plan to attend an awards ceremony on Tuesday May 10th at 6:30 pm. It will take place in the high school auditorium. Once again, congratulations and I am looking forward to presenting you with this award in May.

Sincerely,
Ray Pohlman
Athletic Director (Perrysburg High School)

Blessings:)
Amy

Toledo Crash Wins Against UT

2011-04-20T18:42:00.001-04:00

Hi all!

On Sunday, the Toledo Crash wheelchair football team won its game against The University of Toledo Football Team. Nick played for his second year and was quarterback. He got four touchdowns and most of all, he had a BLAST! He loved it! It's VERY competitive! Congratulations to the entire team! There is an article on The Ability Center of Greater Toledo's website (http://www.abilitycenter.org/) and also, if you are on Facebook, The Toledo Crash have a Facebook page with lots of pictures!

One of the great parts of the day is how blessed we were that we had so many family and friends came to support Nick and the team. We had 22 of our friends/family come to the game and that really meant a lot to us! Thank you to everyone who came out to cheer Nick and the team on! One of the teachers from Nick's school, not one of his teachers, came as well which was SO cool! Nick's former para who has worked with him on and off since third grade, who has dealt with a life-threatening illness over the past year and is still dealing with it, came with us and one of our friends who is living with cancer came. He just had surgery for his cancer the prior month and had only been out once before he came to the game with the rest of his family who are good friends of ours. We think it says a lot and it means a lot to us that everyone came, including these people who have been and are dealing with illness and still came to support Nick! THANK YOU and we love you all! We are just so blessed to have good friends and family. We think over the years, we've made long-lasting, good friends and a small but close group of people who have been on this journey with Nick and us over the past 17 years and a steady part of our lives. We often feel like we get more than we have the opportunity to give to our friends and family, especially when we're dealing with challenges with Nick, and so we know the people in our lives are special and loyal.

After the game, a large group of us went out to eat and I'll say it again, it was just such a nice day! A real "feel good" kind of day!

Congratulations to our niece Maddie who won several trophies and danced beautifully at a dance competition in Michigan last Saturday. We were lucky to be able to go and watch her dance. She is REALLY a great dancer! We're so proud of her!

So, it was a great weekend for Team Hyndman!

Blessings:)
Amy

E-mail from Reader

2011-04-13T16:52:00.001-04:00

Hi Amy!

What a wonderful blog you have (and such beautiful kids!)

I came across your blog, and have shared it with my daughter, Angela. She was stillborn, and went fifteen minutes without oxygen at birth. She was diagnosed with spastic diplegia at two years old... but those first two years (as I'm sure you know) were a rollercoaster ride all by themselves. We've been fortunate in that her CP has not been as severe as it could have been. But, she has still faced challenges in everyday life (sometimes unknowningly). I've always taken a pro-active approach with her treatment(s) and have never allowed her to give up easily. Since Angela's diplegia has been so under-the-radar, for many years Angela has been under the impression that "SHE" was the "only one" who had these challenges.

I think it's great that you are sharing your family experiences with others, and I thank you for doing so :-).

Sharing your blog/story with her allowed me another opportunity to "prove" to her that having any type of disability, no matter how severe or mild it may be, is not an inhibitor in life and should never be the "crutch" for giving up or not trying. (Apparently, when she turned 10, I went from "all-knowing" to "knowing nothing" so showing her stories such as Nick's is the only "real proof"!).

A very good friend of mine has been working on a project that has this very goal in mind. Angela and I have jumped onboard 100% and we'd like to share it with you, possibly get some feedback, and hope that you will share it, too. Please take a look at the trailer that's posted online and let us know what you think.:
http://www.indiegogo.com/the-cohesion-project

If you'd like, you can contact the director, Doug Bollinger, personally (I've also included him in this email).
I am looking forward to hearing back from you, and to keeping up with your blog!

Thank you,

Elizabeth Magistro &; Angela Beller

(Post of The Cohesion Project Info. below!)

The Cohesion Project

2011-04-13T16:34:00.000-04:00

email: thecohesionproject@gmail.com