Question From Student In Australia

Hi all,

I received the following e-mail from a student/reader who lives in Australia. She gave me permission to share this but not her name, so I took her name out. Here is the e-mail:

Hi Amy (and family),


My name's _____. I'm a senior in high school in Australia. At the moment, I'm working on a major project for my English class. I am writing a mini-novella based on the true story of Tate and Nash Kemp -- and I believe you are aware of them as I noticed you posted the video on your blog. I was wondering if it would be possible to ask you a few questions about how your own family copes with the struggles of having a member with cerebral palsy, and possibly receiving some insight into the emotional and social aspects of the illness, rather than just the facts that a quick Google search can provide. It is the smaller details that will help shape my understanding. I'm hoping to discover some of the idiosyncrasies of the illness that outsiders would not be aware of. Please understand you have every right to decline my request, especially if it sounds too intrusive. Though I am aiming to be as respectful of your privacy as possible.
Thank you very much for your time,
(student)

Here's the second e-mail I received from her:

Hello,

Thank you so much for agreeing! It means a lot. Yes, Australia's really amazing, bias aside.

I totally understand. My brother's currently in California visiting his girlfriend, and they've been busy with Thanksgiving and crazy shopping!

Of course you may post this online, and, yes, if it's okay, I'd prefer my name to be kept out.

I have some, I suppose, prompt questions for you to lead you in the right direction. Use them as strictly or loosely as you like! If you would prefer not to answer one, that's no problem at all. I am appreciative enough that you have agreed to help me.
- What kind of things are necessary for your family to do every day to keep Nick's illness managed? Or, how do you help him to manage on a daily basis?
- How does Isabella cope with her brother's disability? (I'm aware this is a big and broad question so I will allow you to take it where you want it to go)
- Are there regular doctors' appointments you would have to make to monitor the illness and in particular, his deteriorating hearing, as you mentioned on the blog? What do they involve?
- Has Nick received a lot of trouble from his peers for his disability?
- I know you mentioned the impact from your own friends and other families within the community, which just shocked and outraged me. Anything more you have to say on this, as specific/broad as you would like, would be appreciated.
- And basically YOUR opinions/views/feelings about anything related to how your family is coping with this. I am just so interested in picking your brain, if you can't already tell, so you can share whatever you feel like as I am a keen listener.

I commend your participation in the online community and the courage you have to share yourself and your life openly. It is no doubt a help to myself in this situation and many others in ones similar to yours. Thank you so, so much!
(student)

Here's the responses I sent her:

Hi _____,

I'm sorry it has taken me a few days to get back to you. I hope I am not holding you up in any way!

I'm just going to copy and paste your questions and then answer them:

- What kind of things are necessary for your family to do every day to keep Nick's illness managed? Or, how do you help him to manage on a daily basis?
With Nick's CP, we use physical therapy (PT), occupational therapy (OT), and speech therapy, as well as PT in the water. Now, he only really receives PT right now and he only now goes as needed, when he's having a problem. We have to use a variety of exercises at home DAILY, including stretching to help his muscles from contracting and to manage his pain. At home, in addition to daily stretching and exercises (about 30 minutes as he is wrestling at high school right now and works out a lot for that), we got a portable whirlpool tub we can put in our bathtub (we cannot afford a jacuzzi tub or pool right now!) and he soaks 30-40 min. at night in a hot whirlpool bath with Epsom salts to help relax his muscles and help with pain, he takes medications daily for GI Reflux, allergies, and nerve damage/pain, we put bars he can hold while standing up in our garage, hallways, bathroom, and Nick's bedroom, have special rails installed on our toilet and bathtub, a special shower-head he can pull down and use in the tub, a shower chair to take showers with, ramps at all three entrances in the house, a special phone with large buttons and for hearing impaired individuals. We also use straw cups for him to drink from with handles. Nick has a service dog who can retrieve items he drops, the telephone, get him a snack, etc., and more. Nick wears hearing aids during the day and uses an FM system to stream sound from his IPOD, speakers at school, etc. We have a special smoke detector with a strobe light and a bed vibrator for hearing impaired individuals, as well as a special device that makes his bedroom light turn on and off when the doorbell rings or phone rings. He has an alarm clock that is very loud and vibrates his bed. He has bed rails (on a regular bed). He uses a wheelchair and walker to get around outside the house, as well as a Segway and he wears AFO leg/foot orthotics during the day when he's not at home to help him walk. I think that's it. Hope I'm not leaving anything out!

- How does Isabella cope with her brother's disability? (I'm aware this is a big and broad question so I will allow you to take it where you want it to go)

We just have ALWAYS, from the time she was a baby, talked about Nick's disability, read her children's books about disabilities and with pictures of people in wheelchairs, etc., answered her questions honestly at the level she was at when she asks them, she's around other kids with disabilities and adults all of the time at Nick's activities and with our friends, so it's kind of like we have "as a matter of fact" attitude about it all. We let her tell us how she feels, whatever it is, cry, whatever. We include her in all things we do with Nick, literally, if she wants to be or sometimes we just do it as a family. (ie: we all four went to Canada for 6 weeks in 2002 for conductive education therapy) Currently, Bella is 11 and she attends sibshops (workshops for sibs her age) monthly (website on my blog), and she has books for kids her age and adults on having a sibling with a disability. Isabella has never seemed to have been jealous because we include her in everything and spend one on one time with her too. She and Nick are VERY close, hang out all of the time, she's very protective and sensitive when others tease Nick or stare at him (it makes her angry/sad and we talk about that!). At her teacher conference at school last month, her teacher said she is one of the "most compassionate" students he's ever had in 5th grade and she helps kids in her class with autism without being asked to do so and is very "inclusive". I believe that has everything to do with being Nick's sibling. Whatever she feels at any time, we'll just talk to her about it and work it out! We don't want her to believe "disability" is a BAD thing, and she doesn't.

- Are there regular doctors' appointments you would have to make to monitor the illness and in particular, his deteriorating hearing, as you mentioned on the blog? What do they involve?

YES, we have alot of regular doctor appts., every three to six months with is orthopedic doctor and GI doctor, the neurologist once a year, his family doctor yearly and whenever he's sick, his audiologist and ENT every 6 months to a year, yearly hearing tests and adjustments to his hearing aids as needed, he needs new ear molds and adjustments to his leg braces yearly, and now we do PT as needed but we used to do it anywhere from three times a week to once a month, more when he was younger, less as he's gotten older.

- Has Nick received a lot of trouble from his peers for his disability?

Yes, he has had trouble many times, more than I could write about. More staring and teasing in elementary school and Jr. High, early high school, less teasing in the last few years in high school (maturity of the kids increasing and we had a school-wide disability awareness training). Terrible comments over the years. Nick's had a variety of strategies in dealing with it, depending on his age, but overall I can say, he amazes and impresses me so much at how he handles it most of the time. We've cried together over things too. We've done a lot as parents and as a family to address this issue too over the years.

- I know you mentioned the impact from your own friends and other families within the community, which just shocked and outraged me. Anything more you have to say on this, as specific/broad as you would like, would be appreciated.

Well, I know I said a lot in the blog. Overall, I think people are just ignorant and if they haven't experienced having a child or family member with a disability, they don't understand what it's like, the little and big things you deal with on a daily basis. It's an ongoing thing we've dealt with but we've weeded out a lot of good people and friends we've met along the way.

- And basically YOUR opinions/views/feelings about anything related to how your family is coping with this. I am just so interested in picking your brain, if you can't already tell, so you can share whatever you feel like as I am a keen listener.

I think, overall, we've dealt with Nick's disability the best we can. Sometimes better than others. We've felt the whole range from shock, anger, denial, acceptance, sadness, encouragement, on and on......! I think we've become very educated. The best way I can describe it is bittersweet and like a roller-coaster, a lot of ups and downs. Honestly, most of the time, it's exhausting if I think back to the beginning until now and there were times it was very dark and we didn't have or get a lot of hope when he was very young. We were depressed I'm sure. We had to decide, a firm decision, when he was about three I'm guessing, that we were going to focus on the things Nick CAN do as much as possible, instead of what he can 't do all of the time. Professionals always remind us what he CAN'T do, believe me, so it's still hard to hear those things or when we see other kids his age, but we keep reminding ourselves of how much he is doing and can do that we were told he'd never do. I'd say, our lives changed forever the day we found out Nick had a disability, in some bad ways at times, but mostly good ways, and we can't imagine our life without Nick or Bella in it. Our life revolves around both of them, and a lot of it around Nick's disability but as I said, we try to do it as a family so we're together as much as possible. I think that is what a family is all about. We'd do the same if any of us needed it. That's why I say we're a team, Team Hyndman, because we are always on each others side and biggest fans. So, no matter what happens, we'll be OK in the end because we have each other. Nick is as much of a contributor in our family as any of us, he listens to Bella and us, tries to help us, is encouraging, is funny and fun to be with, tells great stories and has a great sense of humor. He helps Bella with her homework and helps her study, shows her how to do things on the computer when she needs help, they play video games a lot together. He helps her download songs on her IPOD, etc. OK-I've written too much! Sorry!

If you have any other questions, just let me know. Hope this isn't too late and I hope it helps.

Take care,
Amy

If anyone has anything they'd like to share with this student, let me know and I'll pass it on to her.

Blessings:)
Amy

December 7, 1993 - Diagnosis Day

Hi all,

17 years ago today, December 7, 1993, our son, Nick, was officially diagnosed with cerebral palsy when he was not quite four months old. I know I wrote about this day in detail in a previous post.

I remember the day, the overcast, cold, weather, what we were wearing, my face getting hot and tears coming without control. I remember looking at Nick, my baby, thinking how much I loved him and telling him I was going to take good care of him and give him the best life. I remember my throat and chest getting so tight I couldn't talk, ALL of it. It was a defining day in our life and we had no idea what the future would hold. Thinking back, one of the hardest, most frightening things was the unknown. I still feel that way when I think of Nick going off to college and out on his own one day. I know now, though, that whatever happens, things ultimately work out and will be OK.

Blessings:)
Amy