Friends and Summer!

Disabled people can still have a great summer. I've been frustrated because so much of my summer is at physical therapy, occupational therapy and speech therapy and appointments! I've been extremely busy. I've made time to hang out with some of my friends, though. I've already been to Kansas to hang out with my cousins and will be going to Iowa later this month. 

I am so lucky to have some really good friends, especially Jake and Tyson. I have a lot of really great friends. They treat me like everyone else. We laugh a lot and most of my friends like to tease my sister and that is fun to watch! Friends are one of the highlights of summer. Sometimes I miss school, but when I see my friends I feel all better. Disabled kids need friends to get through tough times. Not just friends, good friends.  I guess everyone needs that. Summer isn't good without good friends. I really want to go fishing with some of my friends this summer. I hope I get to. My parents say I need an adult to be with me and I hate that. I won't fall in the water!

 I'm getting a lot stronger. I still have to use a g-tube, but I have been able to eat a bunch of stuff! It's sooo good to eat again! In August, I will have another swallowing study. Hopefully, I will get permission to eat whatever I want! 

A special shout-out to Carter, who commented on my last post. He is an awesome kid and he is a lot like me (awesome). He's got a positive attitude and you know I love that!

Later,
Jack

Tough times

     I have had a a chaotic couple of months! My body was so tight. I was having really severe, painful spasms in my whole body. I ended up having surgery on my head and neck for Chiari Malformation. That has nothing to do with my CP. I was in ICU for a week and in the hospital for two weeks. Now I am staying at Marianjoy rehabilitation hospital because my muscle tone had decreased so much that I was having trouble swallowing and I couldn't even drive my wheelchair. I am not allowed to eat anything by mouth right now. I had to have surgery to get a G Tube (that's a feeding tube). It's really hard to cope with that, because I love eating! I told my therapists that my teeth are bored. Although, I know some people are going through so much worse times like the people in Oklahoma. 

     I am feeling a little homesick tonight.  My parents have helped me a lot because one of them is always here with me. My mom is trying to get me to switch beds with her, but that couch doesn't look comfortable so I'll stay in my amazing bed with the special mattress. It is sooooo comfortable, I love it!  My conscience tells me to pray every day that I will get my regular life back again.  Always don't wallow in self pity. Just try to tough it out. It will make things a whole lot better. Every person has a lot of rough times, you are not the only one. 

Later,

Jack

Subbing for Jack...

Hello to Jack's readers. I am Jack's mom. He hasn't been able to post lately, because he's in the hospital. In addition to his Cerebral Palsy, he has Chiari Malformation, and had to have surgery to relieve pressure on his brain stem. He is doing well, slowly making progress. I am sure he will be posting soon. Thank you!

Everybody feels left out sometimes

      I have been sick lately and its been so awful. I had a really bad cold and bronchitis (ain't nobody got time for that). When I'm sick, it affects my muscle tone and sometimes I get really tight. It is so hard to get comfortable when I'm like that. I hope it gets better soon because I am so sick of this!
      I am going to talk about feeling left out. Whenever I hear somebody talk about something I can't do, it makes me feel lonely and left out. My mom tells me that everyone feels this way sometimes, even people without disabilities. I know she's probably right. Today I am going to a movie with one of my friends. I love watching movies with my friends because I can totally do that in a wheelchair! There are so many things I can't do, though, and it gets frustrating. My friends talk about stuff and I so wish I could do the stuff they're doing. I know I'm lucky that I can do a lot of stuff. It is great that most places are handicapped accessible. I know things weren't always like that. I can't imagine living like that! I can do so many more things than I can't. (My mom keeps telling me to be positive) I think about that every time I'm feeling left out.
     Believe that you can do so many things. Don't dwell on the things you can't do. Focus on what you can do! Sometimes it's hard to do that. If you don't, you can make yourself get a bad headache and you won't be a happy camper! I learned that the hard way.
Later dudes and dudettes,
Jack

Perseverance!

     I am sorry that it has taken me so long.   My topic today is to persevere. You can do almost anything if you just persevere.   I know that it is tough.   A disabled person can very well get a job.   It is one of the great gifts God has given to us.   Disabilities can’t change our identities.   It is only a part of us.   There are really no limits.   Believe that you can change the world! Believe that anything is possible! Believe! If you persevere, you might make these beliefs come true.   
     Technology is always getting better. Therefore, we have the tools to help us persevere.   What would we do without them?  Good thing that we don’t live in ancient times.   Back then, disabled people could barely do anything.   That must have been so frustrating for them.   Now, we have the resources to make us have a good life.   
     Later, Jack 

Acceptance

Cerebral Palsy can change your life.  It can’t ruin it. You can still do amazing things.  Some people think less of us. We should be perceived as the same as non-disabled people! Sure, we can’t talk as well as other people. That is why there are communication devices. PRC has some great communication devices. Check them out at www.prentrom.com. They have made my life a ton easier.  Without them, I wouldn’t be what I am today. I’m so greatly influenced by my my eco.   

I love to talk to people. It is tough for me to get into a conversation.  My Eco isn’t fast enough.  That is very frustrating.  Therefore, I try hard to make it happen.  Most of the time, it isn’t perfect.  At least I can communicate.   Technology has come a long way.  I can’t wait until the best communication device comes out! 

  

      I just found out that today (January 20th) is a national day of acceptance for people with disabilities. I think that is a really cool idea. I am really lucky that people make me feel accepted. My family always accepts me and I feel accepted at school too. I have never been bullied and I know that I am so lucky. A lot of people with disabilities get bullied. That is so sad. It is sad for anyone to get bullied. I know that some people are different in a lot of ways but that is no reason to be mean. 

Later everybody,

Jack

Merry Christmas!

     Wow, I haven't posted since Thanksgiving! I love Christmas! It's my favorite time of year. I like to hang out with my family. Also, I like to get presents of course. I like to give presents to people, too. Even though I am disabled, I can still have a great Christmas. All you need to have a great Christmas is LOVE. It also helps to have lots of food and presents. Don't forget to go to church!
     Cerebral Palsy is very hard for me. Sometimes, I don't know how I get through it. I get really down about it sometimes. I don't understand why I have CP. Oh well, I just have to live my life anyway. My mom tells me to focus on all the good things in my life, like my friends and family and all the awesome stuff I have.
     I hope everybody has a great Christmas and a Happy New Year!
     Jack