Just wanted to share this blog entry from the Hyndman family. To follow their blog, go to:
Cerebralpalsyfamily.blogspot.com.
You know that saying, "Sticks and stones will break my bones but words (or names) will never hurt me" ? Well, I say that is a bunch of BULL!!!!! (excuse the language-that's the kindest word I could think of to use!)
Not only have I been Nick's Mom, the mother of a child with disabilities, for 17 years now, I've worked with individuals with disabilities and their families off and on in a variety of capacities for 20 years. I've spoken with hundreds of individuals with disabilities and their families. So, I base what I'm saying on not only OUR experience, but the things I've learned from others as well.
I've said this before, but when a person had a disability, it not only affects them (primarily) but it impacts everyone in the family. I've also said before, we consider ourselves (Greg, Nick, Bella, and myself) a "team", not just a family. When one of us is hurt, we all hurt. Over the years, we've experience countless things. Nick individually, us with Nick, and Isabella even has experienced people's ignorance, calling Nick names, teasing him, saying insensitive things or excluding him. I could write a post or at least the chapter of a book recounting these incidents and I think people would be shocked at much of it. Nick would say and we'd agree that the physical and medical things he's been through have been tough, but the people's words have been even more difficult to endure. Word stick with you. My personal opinion is that words, things people say, are personally far worse to deal with and forget than anything else a person can endure. And, yes, we take then personally. How can you NOT take it personally when you are human and have human feelings and people are talking about you or someone you love? We can't. Social issues have been a much more difficult problem and challenge for Nick to deal with than the physical/medical stuff consistently, and at every stage.
Words DO hurt, worse than anything else and they stick with you for the rest of your life. You can deal with it, forgive, move on, but you never forget them and they shape you, sometimes for the better and sometimes for the worse, into the person you currently are. That is something I KNOW to be true for Nick and for all of us in this family, and in my opinion, for everyone.
Words cannot be taken back or changed, or heal like a physical wound. So, for all of these experiences Nick has had and we've had with him over the years, most of them come from people outside of the family. I've spoken to so many families who have told me stories of how their families have not included their child with disabilities and were ignorant and said or did hurtful things. I couldn't believe it and I felt so lucky because we did not have that happen at all for many years. Our families do include Nick and for the most part, they get it and understand. Especially our parents, well, they REALLY get it and have been there consistently.
For Nick, the first experience he had from a person he was close to was with a neighbor boy who was his close friend for years. He lived across the street and would be over our house almost every day when school was not in. This boy declared he Nick would be his "best friend forever". Then, as kids do, he got older and the difference was, he could go and and do things that Nick couldn't do, so over time, he kind of "outgrew" Nick and left Nick here with no explanation and no longer included Nick in what he did. It left Nick hurt, angry, sad. (and us too) In his case, he didn't hurt Nick with words but the social rejection was so hurtful. Nick has two cousins who are close to him in age and who he was really close to, would do things with, and when we had family get togethers, etc., they would be inseparable. Then they also grew up, as they should, and outgrew Nick. They basically started doing things that Nick couldn't do, with their friends, etc., which is normal and understandable, but what also happened is that even at family get togethers, they would not talk to Nick, play with him, etc. They still don't give him the time of day most of time. Nick has shared with us MANY times now much this has hurt him and it was at this time that we started to understand that the things that other families were telling me were now coming true for Nick/us. We get it now. You expect those things (unfortunately) from others to some extent but we didn't expect Nick to be excluded within his own family in that way, that for a teen, is devastating.
Then over Christmas this year, Nick had family member(s) say something that was VERY hurtful about Nick and even though it was said to be "out of concern" for Nick, what was said was hurtful and mean. One of the most hurtful things about it from Nick's perspective is, he said that one of these family members did not even speak to him until it was to say good-bye at the end of the night, not one word, and they usually don't give him the time of day, yet came to me and said these really hurtful things. Like Nick said, if they were so concerned about me, why don't they even look at me or talk to me? I thought he had a great point. Now these words that were said have not only hurt us (Greg, Nick, and myself), but we know now how these people see Nick (in not a favorable way). It really ruined the get together for me. I tried to keep a good face on for the kids but it was so hard. Greg and I decided to just spend the rest of the holidays on our own, just the four of us and the kids agreed to spend New Years just the four of us. It felt good because we didn't have to worry about being hurt by anyone ignoring Nick or saying anything hurtful.
So, words DO hurt and the intentions behind them hurt when people exclude and ignore you yet have an opinion about you. Did I vent a little by writing about this? Sure. Did I write about it to share with other families, YES. Just as so many families have shared these hurts with me over the years and I didn't REALLY understand it until it happened to us. Now I get it. As always, this will not get us, Team Hyndman, down for long. We know as long as we have each other, we'll be OK and we are excited for 2011 and to see what it brings. We expect it to be a year of change and transition for Nick especially with his graduation, starting college we hope, and turning 18 in August. So many changes but we're doing it all together!:)
Friday, January 14, 2011
Tuesday, January 4, 2011
No Fear Here!
"I have decided to kick my bad habit of using F-words."
Now there's an eye-catching blog entry!
No, it's not what you think! The link you'll see is to Susan Panning's blog. I appreciate her friendship. I am also envy of her talents in graphic design! Taking risks is what I always assumed was innate in her being as an artist. I was rather surprised to read her confession of "fear" and "failure".
"Have you ever really listened to yourself?
I catch myself saying things like “I’m afraid if we try this,
it may not work and we will have wasted our time,” or
“Let’s make sure it’s the perfect time to launch this,
that way our risk is low.”
Regardless of whether we are a person who happens to have a disability, family member/care provider, teacher, direct service provider, volunteer, staff, or even a graphic artist, we can relate to statements like "it might not work", "it's not the right time" or "it's just too risky." As advocates, we know it's scary to do the things we need to do to be heard. And sometimes we just feel that no one will listen.
Now more than ever is the right time to to let go of those words fear and failure. Budgets continue to be cut. Services for children, youth and adults with disabilities are at risk everyday. Each one of us has a responsibility to take a risk. Will this be your year to call your legislators to encourage lessening the cuts in departments/programs who support individuals who have disabilities? Don't let the fear of failure stop you!
"It’s not easy wrapping your brain around the idea of
embracing failure. It actually sounds ridiculous.
Yet, if you think about anything of significance that has been
introduced into the world, it didn’t happen overnight.
It wasn’t a one-time shot, launched at the perfect time when the
risks were moderately low. It happened because someone
believed that it could; their failures had transcended
into their greatest teachers.
The right time is now, so let’s get busy."
To read Susan's complete entry, go to:
http://www.lime-creative.com/limelight/files/463f17e9cf9cb7576ef24dbf91e645ae-20.html
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