Sbiling Resources

Hi everyone,

I was contacted today by a Social Worker in another state asking about resources for a sibling of a boy with cerebral palsy.

A great resource online is www.siblingsupport.org, Sibling Support Project. Also, I had a previous post about siblings anyone can check out where I listed some books for sibling of individuals with disabilities. If I find any new resources, I'll add them on to this post and also add any links on the links section of this blog. If anyone knows of any other resources they feel might be useful to share, let me know anytime. My contact information is on the right side of the blog or you can comment on the blog itself.

I think it's always important to share good information:)

Thanks!

Blessings:)
Amy

Nick on FOX TV Sunday 1/31/10 on Rychnovsky Recap

Hi everyone,

FYI- There will be a story about Nick and his wrestling on FOX Toledo (channel 12 Buckeye Cable) on Sunday 1/31/10, 10:30-11:00 pm, on Rychnovsky Recap.

Joe Rychnovsky contacted us. He is a reporter at FOX Toledo. He got some film of Nick wrestling at a match last Thursday and came to our house to interview us last night. Today he went to Nick's wrestling practice to get some more footage. It was really funny. We've never done anything like this before. Nick was great. He was articulate and answered Joe's questions really well. Greg and I were not prepared ( I don't know what we expected....we didn't I guess) for some of the questions and were blabbering fools. ( I mean that with affection Greg:) ) We were talking last night and said, "boy, we'd really like a re-do, hopefully they'll edit us out!"
LOL! Anyhow, it's really all about Nick and the story isn't just about Nick and his wrestling but it's about the coach, Matt Boggs, and Nick's teammates and other wrestlers and coaches from other schools and how they've all been so supportive and inclusive to Nick. As Nick said, he may not be winning his matches (although, I say you never know what will happen with Nick!), but he is out there. That is what it's all about. Nick being out there, living his life, fully, the way he wants to live it, the way it should be! That may seem "obvious" to some, but the truth is, that hasn't been Nick's experience many times and MANY people do not interact with individuals with disabilities this way. Really, they often don't. So, this experience has been the most pleasant surprise for us and for Nick, and we love it and are so grateful. It's hard to put it into words and say all that it means to us.

Go Nick!

Blessings:)
Amy

January 24, 2010 update

Hi everyone!

It's hard to believe it's almost the end of January! Happy New Year again to everyone!

We've been busy with Nick's wrestling and getting back into our routines with school and work, etc. As you know from previous posts, The Toledo Blade and The Sentinel-Tribune did stories on Nick which I put the links to in previous posts if you're interested. We had an interview this past week with a reporter from The Perrysburg Messenger Journal for a story, which hasn't yet come out. FOX news is also going to be doing a story and have already come out to one of Nick's matches this week to tape some footage. They're supposed to come over this week to interview us. We've been getting a lot of e-mails, mail (cards, etc.), and wonderful messages from people, some we know and some we don't. We want to thank everyone for their kind and supportive comments, thoughts, and prayers for Nick and our family that have come as a result of the stories about Nick's wrestling. We really appreciate it!

Nick has wrestled in a couple of matches this month. Yesterday they had a tournament at Lake High School, Nick wrestled twice. Nick did not win his matches but did GREAT and continues to get stronger, and is learning more and more all of the time. His team DID win the tournament yesterday! Go Jackets!:) The other coaches and wrestlers have been so kind and supportive to Nick, telling him to "keep going"! The thing that gets me (Amy) the most is watching how much, how often, and how far Nick has been walking during his matches. Just seeing him stand up, no leg braces, no support, no walker or wheelchair, all on his own, standing up and walking, is amazing. It takes my breath away, literally, every single time. It makes me pause and think about how far he has come and how much stronger he has gotten just since he started wrestling. We had no idea he'd be doing ANY of this three months ago, NONE! There are no words to adequately describe how proud we feel and how amazed Greg and I both are. We're just going along for the ride and we'll let Nick show us what he is capable of and can do:) Nick was also the honorary coach at a Jr. High wrestling meet in Perrysburg this past Wednesday. He was asked to coach and give a speech to the boys and he did a great job. They gave him some cool shirts to wear and he loved doing that! He gave them some inspiring words to think about.

Bella has been busy with dance again and still loves it. She got her grade card this week, all A's! Nick got all A's and B's! All we've ever asked them to do is "do their best". We're so proud of them both! The thing that makes us most proud though is what kind of people they have become/are becoming, kind, thoughtful, compassionate. We've always told them, we'll be there to support you and will be proud of you and all of the activities you do. BUT, your grades, trophies, accomplishments, those things are nice, but don't matter as much to us as the kind of person they are! No grade, degree, trophy, success in an activity will be as important to us as if they become good people and treat other people well. Don't get me wrong, of course we are proud of all of the things they do and if they are doing their best, that's what we want. It still doesn't matter to us as much as their character and how they treat, talk to, do things for, etc. other people. Having said ALL of that, we think they are turning out to be wonderful human beings so far!:) (didn't mean to go on so much!!!!!)

That's the latest scoop on Team Hyndman!

Blessings:)

Amy

Video of Nick Wrestling

Hi everyone,

A good friend of ours, Pat Detzel, took video last night of Nick's wrestling match at Springfield High School. She put it on You Tube. The link is:

http://www.youtube.com/watch?v=ynJ1l4Cj03c

You don't have to have a You Tube account to watch it. Turn on the sound too:)

Blessings:)
Amy

Post from Isabella 1/20/10

Hello everyone,

Isabella asked me to post this piece she wrote for the blog. Here it is!

Blessings:)
Amy

A Big Experience

Hi,
It’s me Isabella. I am writing about one big experience I had had involving Nick’s disability. Well I am sure my mom has probably talked to you guys about Nick’s big surgery he had about two years ago. But, I want to talk about it in my point of view. The day he had his surgery we were driving to the hospital and I did not really think it was going to be a big deal. Of course I was wrong!!!! We got there and we were with my grandma and grandpa W. Nick was about to get ready to have his surgery and I was allowed to see him real quick. When I came in there I began to understand how much of a big deal this was. When I came in there I saw tears rolling down his cheek and he was squeezing my grandpa J’s hand. He made my mom cry, he made my dad cry and he made me cry. When we went out he was in surgery for hours. I was waiting with my family for a very, very long time! When he was done only the grown ups were aloud to see him that night, and of course that made me even more sad:( Later that night when I thought I was going to go home to my bed, my parents said I was going with my grandparents. Now don’t get me wrong I love having sleepovers at my grandparents, but I just had a long day, I was worried about Nick and I really wanted to see him. The next day I could not wait to see Nick! I got there and I asked my dad how Nick was because he stayed with Nick while mom went home to feed the dogs. He said, “He was in some pain”. I checked in on him and he was exhausted!! He was moaning in pain like crazy, it made me cry.:( We stayed there the whole day. Again when I thought I was going home, I went to my other grandparent’s house. That night I cried myself to sleep worrying about Nick. For several days and nights and finally he got to come home. When he did he spent most of the time relaxing. I was so relieved that everything was over!:) If you are wondering the results almost everything turned out good except the surgery went a little wrong and know he has permanent nerve damage in his left foot. :(:(:(:( But it has gotten a little better. So as you can see it was a big experience and I don’t think I will ever forget that day!


- Isabella Grace :)

Fact Sheets from United Cerebral Palsy

Hi everyone,

Here are some links from ucp.org, their press room on their web site. These are some great sheets on facts about cerebral palsy and choosing words with dignity when talking about individuals with cerebral palsy (and other disabilities obviously!:) ). I think these are good. If you have trouble opening them from this post, check out their web site.

http://www.ucp.org/uploads/cp_fact_sheet.pdf- Fact sheet on Cerebral Palsy

http://www.ucp.org/uploads/Choosing_Words3.pdf - Choosing Words with Dignity from ucp.org

http://www.ucp.org/uploads/Cerebral_Palsy_Quick_Facts.pdf - United Cerebral Palsy Quick Facts

Blessings:)
Amy

Letter to The Editors of The Toledo Blade by Dan Wilkins

Hi everyone,

A friend of ours, Dan Wilkins, who also works at The Ability Center of Greater Toledo (http://www.abilitycenter.org/) , sent this e-mail to me today. It included a letter he had just sent to The Editors at The Toledo Blade re: the article written by Dave Hackenberg in The Toledo Blade (http://www.toledoblade.com/) on 1/13/10. (see previous post with the link to the article)

Dan's e-mail:Amy- FYI: my letter to the editor (just sent).

Dear Letters to the Editor,

I am writing today to praise one of your own. We who advocate for a more realistic community understanding of living life with a disability have typically had a longstanding issue with the media and their portrayal of or reference to people living with disabilities. Though there have long been references in the AP Stylebook regarding proper terminology for writers and reporters, they are often ignored and seldom policed by editors. I cannot count the number of times I and fellow advocates have read a story only to cringe when we get to the “confined to a wheelchair” or “wheelchair bound” reference, or the use of “handicapped” instead of “disabled”. These phrases are outdated for a reason: they inaccurately represent disability and perpetuate old stereotypes.

This is why I am praising Dave Hackenberg’s recent article on Nick Hyndman, the Perrysburg wrestler living with a disability. It is a beautifully written piece, free of pity and old jargon, about a young man and his dream, a family that didn’t buy a premise based upon low expectations, a wrestling coach, Matt Boggs, who didn’t say “Can we?” or “Should we?” but “How do we?” and, because of all this, the impact the young man has had on his fellow athletes and school community. It is stories like this, written like this, that move us forward toward a more understanding and inclusive community. This article is one I am proud to share around the country and beyond as a story “done right”.

Thank you, Mr. Hackenberg, for writing a story the right way for all the right reasons. Hopefully, other writers, reporters and editors will use this as a positive example.

Sincerely,


Daniel Wilkins
Director of Public Relations and Community Partnerships
The Ability Center of Greater Toledo
419.885.5733, Ext. 257

dwilkins@abilitycenter.org

I think this is RIGHT ON. Thanks Dan!!

Blessings:)
Amy

January 19, 2010 article in Sentinel-Tribune (Bowling Green, OH.) on Nick

Hi all,

There is an article about Nick in today's Sentinel Tribune (Wood County-Bowling Green newspaper). It's also on their web site. (www.sentintel-tribune.com )
Here is the link to the article below:

http://www.sent-trib.com/stnew/index.php?view=article&id=9875%3Aperrysburgs-hyndman-overcomes-disability&option=com_content&Itemid=38

Blessings:)
Amy

Welcome to Holland by Emily Pearl Kingsley

Hi all,

I am sharing the writing below. It was first given to me first when Nick was a baby and many times since then.

Blessings:)
Amy

Welcome to Holland – Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?” you say, “What do you mean Holland? I signed up for Italy I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in flight plan. They’ve landed in Holland, and there you must stay.
The most important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

January 13, 2010 Article on Nick and his wrestling in The Toledo Blade

Hi all,

There is an article in The Toledo Blade today, front page of the paper, on Nick and his wrestling. The reporter, Dave H., did an excellent job listening and an even better job writing it. If you are interested in checking it out, you can see it on www.toledoblade.com or the link to the article is:

http://www.toledoblade.com/apps/pbcs.dll/article?AID=/20100113/COLUMNIST08/301139998

Hope you enjoy the article.

Blessings:)
Amy

Continuation of Discussion on Facebook

Just a continuation of the Discussion I previously posted from Cerebral Palsy Family on Facebook. Just Renee's response from reading Nick's response to her. I won't keep posting everything. Just posting this because I thought it was interesting.

I tried to find the link to Cerebral Palsy Family on Facebook with no success yet. (sorry for my lack of expertise in this area!) Anyhow, if you sign up for a Facebook account, www.facebook.com , for free, you can join the group Cerebral Palsy Family on Facebook. Just type Cerebral Palsy Family in the search engine on Facebook and it will pop up and give you the option to join. It is basically the same info. as on the blog. I started the group to lead people to this blog. There is separate discussions on Facebook and so far, more people have joined than are following this blog. Trying to get the word out for people to sign up to follow this blog but it doesn't seem to be taking off yet. I hope the interest grows:)
Amy

Renee Wood
Amy, Nick is a remarkable young man - when I say that I don't mean because he is disabled and doing all that he does. I mean because he is polite, intelligent and thoughtful enough to (at the age of 16) write and explain to a nosey old woman why he wants to walk! Lol He truly does not owe anyone an explanation of course, but his answer did intrigue me. First, let me say, his answer seemed like a normal teenager coming into his own identity, and he'll figure it all out because he is very self-reflective and that's great. Two things caught my attention though. First, the way you describe Nick's fierce determination and his need to prove that he can do what others say he can't, reminds me of myself when I was younger. At fifty however, I choose a much tamer side! As a graduate of Disability Studies, something Nick said really struck me. "' and I've tried to make myself as non-CP as I can be." Sounds like he's trying to "pass" . That does not mean that he is not happy with who he is. It just means he knows disabled people are treated different than non-disabled, so he wants to pass as non-disabled. I know that sounds odd because his physical disability is obvious to most, but it is the act of "getting rid of anything that stigmatises you as a person with a disability" . Kind of like denying what you know is true so others will accept you as an equal. It's quite common and nothing to worry about, it was just funny to see that they - he'll out grow it! Second Nick says his type of CP is "progressive" . For years I have given talks where I explained that Cerebral Palsy is a "static" condition. Like a spinal cord injury does not get worse - where the brain is damaged, does not get worse. On the other hand, a person might have a brain disease or disorder that causes further damage to the brain, that would cause further Cerebral Palsy. Also the normal aging process is accelerated in people with CP (Arthritis, worse spasticity) but the actual brain damage is the same, therefore not progressive. Trust me, it truly feels progressive, but the actual brain damage is the same - the body is getting worse, yes indeed! So if Nick does not have some sort of underlying progressive disease of the brain, then his brain is not becoming more damaged, unless there's some research on CP that I'm not aware of. Thanks Amy

I wrote:

Renee,Thanks so much for the great comments about Nick. I agree with you and I appreciate the input about how he is feeling, etc. I've noticed that too and to be honest, was a little worried about it. It's good to hear that it is nothing to worry about but I like to be aware of these things too. Yes, I have also told people and Nick, that CP is not a progressive condition (static) and chronic. I think he means his arthritis and pain (back pain, leg pain, and pain in his foot because of nerve damage) has gotten worse as he's gotten older, which his ortho. dr. said we could expect. I'll have to make sure Nick really knows this, I thought he did, but I want to clarify that with him. I know, when I read his response, I had the same reaction. Thanks, it's good to hear from someone who understands what Nick is experiencing and how you see it and have looked at it over time. I was (still am) REALLY interested in the Disability Studies Program at UT! I got my M.Ed. in Special Education in 2006 (My BA is in Social Work and I've worked with individuals with disabilities since before Nick was born!) I just am not certain about school right now because my husband is finishing up his degree and it would be "too much" with us both in school, work, the house, kids, etc. But, maybe when he's done.....Amy

Comments from Nick's Coach

Hi all,
Below is a nice comment about Nick I received from his head wrestling coach at Perrysburg High School after he read the blog discussion in my last post.
Blessings:)
Amy

very interesting comments. I enjoyed reading them. Nick is a fighter and I think you nailed it. he is an athlete in a non athletic body, and like a true believer in himself, he refuses to back down despite this. In wrestling we have one word to explain why we do what we do despite all the criticism about cutting weight, dieting, "rolling around with other guys" and all that stuff. That word is "toughness" and Nick is represents that with a capital T. It is something that true athletes know cannot be taught. It is purely one of the gifts God did give us to help overcome what logic may counter.

Matt Boggs
English Teacher
Head Wrestling Coach

Good Discussion on CP Family Facebook

Hi all,
I am posting a discussion that is on Cerebral Palsy Family on Facebook. ( a group I started on FB to get people linked to this blog!) I think it is a great discussion. I am hoping for more discussions and comments like this both on this blog and FB. This was one of the reasons I started this blog, to make contact with others and discuss things, share information, etc .
Blessings:)
Amy

As an older adult with CP who walked without a walker or any assistive devices until I was 31 years old, I am curious about Nick. I am an athitoid CP and although I did not walk independently until the age of 9, it was virtually painless when I did acquire the ability to walk. If I had the type of pain Nick describes, I don't think walking would have been worth it since a wheelchair gives me as much mobility and freedom as walking did. I'm just wondering why he feels that it's sooooooooooooooooo important to walk? More than likely, if he is having so much trouble now, his walking days will be limited. Besides, the majority of people with CP who have that type of surgery experience more pain later in life than if they would have if they never had the surgery. I guess I would like Nick to know (if he doesn't already) that whether he walks or not, does not change who he is. If he chooses to go through the pain and walk for awhile, that's fine! But it is equally fine if he chooses to put his effort into something other than walking. Good luck! -comment by Renee Wood

Renee,Let me say, as Nick's mother, and having had countless discussions about this subject with Nick, I completely agree with you that it does not change who he is. We've told him that so many times, I can't count. Functionally, we know (and we think Nick knows too) that walking isn't the most efficient way to get around. It's not fast at all, it's painful per Nick, I don't think it's that safe for him (falls, etc.) but ever since we can remember, this has been a goal of his. We thought he'd outgrow the desire as he matured and gets older, maybe he will. We stress the importance of using the most efficient way to get around, whether it be his wheelchair or Segway, both of which he uses frequently. He uses the Segway (with a seat) at school and the wheelchair most of the other outings we go to. Anyhow, we have kind of let him determine what he wants to do. We think the most important thing is comfort and efficiency for Nick to be functional and to be able to meaningfully participate in his life. I will pass this message on to Nick. I'm sure he can offer some insight into his desire to do these things physically in spite of the pain. As a parent, nothing is harder than seeing your child in pain. I appreciate hearing from you. I think it's important for Nick to hear from others who experience similar challenges to his own!:)Amy

Comment By Nick:
Hi Renee, Alright, so as you know there are a couple different types of CP, mine seems to just get progressively worse as I get older, so i'll always be in pain. But from the beginning, Ive always tried to live my life to my fullest potential, and and i've tried to make myself as non-CP as I can be. Now, that doesn't mean i'm not happy with who I am, i couldn't be happier, but the moments where i'm able to do the same things just like everyone else, are the better moments in life, the moments where i feel the most accomplishment and the most comfort. Now walking, yes it is the most painful thing i've ever worked for in my life, but, um, there is no way to describe why I would go through hell and back to achieve it. But you said you achieved walking, and for you it was painless, it's something that was given to you. and i'm happy for you. but without the pain, it causes you to ask that. i'm, sure you're grateful for it, but without the pain, you don't get the same feeling of accomplishment, of hope, of confidence knowing that if you can achieve this in the conditions that were given, then you can achieve anything. Walking is something that is taken for granted sooo much. Using a wheelchair may be easier for you and give you more comfort, but for me, my legs, which are a part of my body gives me more freedom then having to move around in a chair. I'm not saying any way is better than the other because we're all different, but that's just for me. Thank you for listening Renee, if you have any ?'s i''d be pleased to answer them. Nick

Comment by Renee:
Ok, thanks Amy. I'm just curious - I mean some non-disabled people want to climb Mt. Everest as a goal for whatever reason. . It's not like I don't think he should try, I just wondered it's so important to him. I look forward to his answer!

Comment by Amy:
Renee,Oh I totally understand why you are asking. I didn't think you were saying he shouldn't do it. I understand. I think it is just the differences in people and as you know, CP affects everyone differently, and as you said, everyone has different goals. Nick, being a lover of sports, has always wanted to be physically active, the one thing that is the hardest for him to do. Also, he is competitive by nature I think. (mostly with himself!) Even his PT can tell you, when he was a toddler, he had this "attitude" of "determination" like, "I'll show you what I can do!" kind of thing, ever since I can remember. We've always told him, you have nothing to prove to anyone and that he is "perfect" to us, just the way he is, even if he never walked a day (or anything else) in his life, he'd be perfect to us. Anyhow, I REALLY do appreciate the question/discussion. I think it's good. This is just what I wanted for this group. Amy

To be continued......( I hope)

Project S.P.E.A.K.-Upcoming Event (Northwest Ohio)

Toledo Children's Hospital, Project DOCC & BGSU have started a series of Parent Networking sessions. Please post on your website and pass on the attached information to families with children with special needs. It should be a good time for all filled with lots of useful information.
Call me if you have any questions.
Thank you!
______________________________________________________________________________________________
Inviting all Parents of Children with Special Needs!
Come to a relaxed, parent-to-parent networking, information sharing opportunity in your community!
Project S.P.E.A.K.
Stands for:
Supporting Parents through Empowerment, Advocacy, and Knowledge
It is made up of a partnership between Toledo Children’s Hospital, Bowling Green State University and made possible through a grant by the Lucas County Board of Developmental Disabilities.
Each session will:
1. Be fun and casual
2. Have local experts on hand to answer specific questions you might have in managing your child’s needs and point you to agencies that can help
3. Provide information about services and resources in your area that can help support your children and family
4. Connect you to other parents going through similar issues facing your family
5. Provide loads of useful information
6. Have Parent Partners from the Lucas County Board of DD on hand to answer questions about board services and eligibility
Light refreshments will be served
Childcare, interpreters and some transportation assistance is available upon request-please RSVP to Laurie at 419-291-4353 to make arrangements!
Dates & Locations:

1. January 21st 7pm at New Harvest Church 3540 Seaman Rd in Oregon
2. February 18th at 7pm at the Vera & Leo Sekach Community Services Building (Jewish Family Service) at 6505 Sylvania Ave. in Sylvania (in front of the JCC/YMCA)
3. March 18th at 7pm at Hope United Methodist Church at 10610 Waterville St in Whitehouse

Other dates through June to be announced. For information please contact Laurie Mold at 419-291-4353 or Family Information Network at 419-254-4644. Visit FIN’s website at www.unitedwaytoledo.org/FIN for updates on this and all disability related events.