"Can't is a bad word!"

When Nick was 7 years-old and in the second grade in 2000, I was pulled aside one day at his elementary school by one of his new aides (or para-professionals, people who assist Nick at school with physical tasks such as writing, carrying things, etc.). She wanted to tell me how "impressed" she was, "tickled" with Nick. She said Nick was trying to walk one day within the classroom to get from one point to another without his walker. He was told by his para that he could not do that, for safety reasons I guess and because he usually used a walker. He looked at her and said, "Can't is a bad word!" Of course, what he meant was, "if you tell me I can't do something because I have cerebral palsy, I am going to show you that I can, don't tell me I can't". He wasn't being disrespectful. He was just saying, "I'm doing it, you see me doing it, don't tell me I can't". Greg and I got such a kick out of this because we knew what Nick was trying to say and do in his wisdom at the age of 7.

Nick has always been "determined", and showed this determination as a toddler in physical and occupational therapy and at home. We were told, by more than one person, that Nick would probably never walk or talk and would have mental retardation or what they now call cognitive delays. There is a wide range of functioning levels within the population of individuals with CP, while there may be similarities between individuals, CP affects everyone differently. When Nick was that a baby, we started to educate ourselves about CP, read every book we could, and spoke to people who were "experts". We said, if Nick does not walk or talk or has cognitive delays, we will love him just the same and make sure he has what he needs. We wouldn't want to be in denial about any challenges Nick would have because that would NOT help Nick is any way. We took the approach we still use today, be realistic AND hopeful at the same time, so you can address this issue and shoot for the best outcome. So, when Nick was a baby and we were told these things, we said, ok, but how do you know? So, we will be him all of the therapy and services he needs and we'll see what happens. Well, we could tell from a VERY young age, even before Nick spoke (and he spoke later than other babies due to the speech impediment from the CP) that he was very smart. He would show us numerous signs and examples of this and we KNEW. In fact, one school psychologist who was evaluating Nick to go to Kindergarten said to me, "is this an overly hopeful parent talking?" or does he have cognitive delays? Of course, anyone who spent time with Nick knew the answer to that. After much planning and trying to convince people, Nick ended up in regular education classes with a para to help him with physical tasks, and the use of technology to help with writing, etc. This is still the case today and Nick has always been an A-B student and done the work the other kids do. So, for Nick, this was the right placement for him and he showed us what he could do.

Nick has always been competitive with himself and determined to "show" people what he CAN do vs. what he cannot do. We've told him, you have nothing to prove to anyone, etc. He, however, just has this internal trait and is very self-disciplined and determined and works hard. He has a positive attitude overall and he lives with pain. He in fact deals with his challenges much better than most non-disabled adults I know. We could all learn something from Nick and people like him.
I believe that we as parents teach our children, of course. I think we learn as much from our children however as they learn from us, maybe more. I think most adults dismiss children too much, not listening to them, thinking they have the "wisdom" and automatically "know more". While that might be the case for some things, I think children are more accepting, honest, and open-minded than more adults I know. Children have to LEARN to be judgemental, racist, discriminatory, unkind. I know I've learned so much from both of my children, and Nick has taught me a lot. He has taught me to slow down, talk less, and listen more to people. One thing that is so frustrating for Nick is that he has CP and a speech impediment and it frustrates him when an adult is "in a hurry", does not slow down enough to listen to what he has to say and let him finish what he has to say before they interrupt him, or try to finish what he is saying. Or, they act like they understand him and he knows by their responses that they don't. I've also leaned patience and to be positive and hopeful. Thanks Nick!

It is in the spirit of "Can't is a bad word!" that I am putting these pics on the blog from Zip lining, just one of the many things Nick did this summer living as an individual with CP. On 8-19-09, Nick and Greg went with my parents and sister and his oldest cousin Chloe to Hocking Hills, Ohio to go zip lining, something my parents did for Nick and Chloe's birthdays this year. I could not go as I had to work and so Greg and I plan to take the kids and go in the near future. Nick had a blast! He said, "zip lining" is the ultimate physical therapy for someone with CP! He said, walking on those rope bridges and the zip lining itself was fun but a challenge. He was so sore the next day! How cool that he did it and loved it! I'm sure we'll see more examples of what Nick CAN do in the future.

Check out http://www.hockinghillscanopytours.com/. They were wonderful working with Nick. My parents informed them ahead of time about Nick having CP and they had no problem working with him. They provided two of their staff to assist Nick during the tour and they were fantastic, including dragging Nick and his wheelchair up the hills! It was very freeing for Nick to be able to fly through the air! They never said, no he can't do this because he has a disability, they said, sure, we'll give it a try and they did. So, thanks Canopy Tours!