School SUCKS

If you are a teenager with a disability or if you have a child with a disability, you know what a fight schooling can be.   I am in my last year of high school and then will be returning to do some upgrading.  I am starting second semester in about 2 weeks and today the battle starts all over again.  For my family and me, as I said we have always had to fight to get all the assistive technology and other support that I require in the classroom.  Due to my inability to print legibly and my visual difficulties, I require a laptop with many programs specific to things like Math for graphing and just doing equations as well as speech recognition software so I am able to work at a faster pace and take a break from typing. 

I have been having an issue with another student who is in a wheelchair and how has a brain injury . Now, don't get me wrong, I understand that a brain injury can cause issues with knowing what is and is not OK to say or do.  This person has continually said and done very rude things to me to the point where it gotten to be verbally/emotionally abusive.  One incident that sticks out to me is him telling me that I was never going to walk and at least he was. I don't care that I am not going to walk (I see it as an excuse to have a set of hot wheels :) , but that was probably one of the most hurtful things anyone has ever said to me simply because this person is in a wheelchair and was supposed to be my friend.  It got to the point where he was told (and so was I) that we were not supposed to interact in any form.  He continued texting me and Facebooking me, gave up for a while and started again.  He has been trying to talk to me at school and also stares at me during class.  My mom called the school because they are supposed to be monitoring the situation and she was promptly told this was a "perception" issue and that they did not see this being an issue, Um, OK.  My mom was also told there had been multiple situations in which I have had "perception" issues or "embellished" the situation. Whatever.  Needless to say that after final exams are over I will likely be moving to a new school.  I am excited but at the same time I am stressed, sad, and angry that it had to go this way.  I will be leaving behind friends from elementary school that I had really hoped to graduate with.  My mom and dad are not forcing me to go; they say I can do whatever feels rights and they will support it.  My heart is pulling me in two different directions.  I want to remain with friends but, I also want to be at school where I safe, comfortable, and supported.  I am not happy at school. My attendance has significantly been impacted due to this and that is not good.  This will mean a new support team.  This will mean a new challenge.  This will mean getting all my equipment transferred over within like 3 weeks (which will be difficult because the Special Education IT Support guy is swamped).  I have pretty much made up my mind and want to go.  My mom is calling to find out what the process is to make sure everything is dealt with and she will then schedule a tour of the school at which time mom, I, my dad, and my OT will go check things out accessibility wise. Normally, OT would not do this, but he says it should not be a problem.  He looked at my shoulder today because of some pretty severe (more than normal) pain and said that it's so tight the stretches he would normally do to fix the tightness will not be enough so he will soon be bringing in a Physical Therapist because it will take two people to get me on the mat and get the issue worked out.  The reason I bring this up is because the tightness will be made worse by stress which will equal more pain.  This is why he is going to try and come with us on the school tour is because he wants to make transition as easy and stress free as possible.  I know between him, my mom, my dad, and hopefully, my new support team, things will go OK but, I type this through tears because I am sad that the people who were supposed to be helping me were the ones who pushed me away and I told my OT today that this really isn't fair; I shouldn't have to move schools because people don't care enough to help me.  Yes, I know life is not fair.  I try to be positive. Tonight though, tonight I am allowing myself to mad, sad, and negative.

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

J

Would I Change It?

The above question is one I have been asked many times. If I could, would I take the opportunity to be able to walk? The not so simple answer is, no, I  would not.  My disability does not define me, but it has shaped me.  It has made me a more accepting, less judgemental, and more compassionate person (or at least I hope it has).  If it were not for my Cerebral Palsy, I would not be the person I am and I know that.  Sure, sometimes I feel overloaded by all the stuff that goes along with my CP, but everyone has things that overload them; work, school, kids, marriage. We all have something that overwhelms us but, truth be told, often times the things we fret over really aren't things we should be worried over.  Now, obviously if your marriage is falling apart and your significant other says they want a divorce or if your kid falls and break their head open well, yeah, you should probably be stressed.  I stress a lot about the unknowns. Driving, moving out on my own, finding a job and all the other stuff and so, as a coping mechanism, I ask myself "is this really worth my time and energy right now?" 99% of the time the answer is no. I shake my head at myself and get on with my day. Anyways, my CP has taught me that I need to deal with the challenge I am currently facing rather than the ones that I may face in the future.  The challenges I face, they're good.  If everything came easy I would be a lot less grateful and excited when little things happen.  For example, my OT has told mom to do more work with me in the kitchen for daily living/fine motor skills and the last few days have been quite successful.  Yesterday with very little help, I made macaroni (yes, it was from a bag, I'm not THAT good yet :) and dished myself up and after cut up some garlic sausage.  Today I cut up more sausage and cut up the cucumbers for the salad (tomatoes are still a bit difficult and need some work). Now, to the average person, this would be no big deal but, because of my challenges with fine motor skills, this was huge and I am SO excited to be able to say I did it!  There are some obstacles I still face like cutting the tomatoes, being able to reach the buttons on the stove, and being able to strain things.  Mom has assured me that with a little bit of help from OT to find the right adaptive equipment, all those issues can be addressed.  Then the dreaded thought came into my mind and I asked mom if she thought I would always have to use certain adaptive equipment and she said yes and that there was nothing wrong with that.  I told her that needing to use adaptive equipment sometimes makes me feel less capable and just as I finished saying that, I realized how flawed my thinking was. Mom beat to it and told me that I have to take the attitude that if I didn't use the adaptive equipment I wouldn't be able to do it all so I may as well take advantage of the things that are out there to help me.   I also asked her yesterday (and please do not leave nasty comments, I am simply being honest) if it was wrong of me to be jealous of people with CP who could walk and she told me yes because she thinks it is a trade off and that there are probably things that the people who can walk can't do that I can.  True. 

To anyone out there facing a challenge of any kind, don't compare yourself to other people because even though on the outside their life make look easier, you do not know their story just as they do not know yours.  You can do anything, you just have to want to do it.  The only limits you have are the ones you place upon yourself.

Ok, it's 4am, I'll quit preaching now.

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

p.s.

Ryan Clausings story is being covered by FOX News!!! Thank you to anyone who commented, shared, or prayed and a special thanks to Joan, the writer of yesterdays article.

Ryan Clausing

Hi all,

I have posted before about Ryan Clausing and his family.  His family is having a lot of trouble right now regarding the legal system and his accident.   If you would like to read more about the Clausings go :

This article
His Caringbridge
 The family site about the accident

His battles are far from over as with any life changing injury, but his battles should not be made more difficult by the legal system which is in place to serve justice.  He was almost killed.  There is no debating that and justice needs to be served.  Please keep him and his family in your thoughts and prayers.

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

J

Little Things Make an Enormous Difference

This brought tears to my eyes. The hearts of others usually open during the Christmas season and we must remeber it is not all about the best gift. There are people out there who can't even afford food, nevermind gifts.  Hold your family close and to those of you how have little ones at home, enjoy being woken up at oh, I don't know, 5am? :) 

http://thebloggess.com/2010/12/my-heart-grew-three-sizes-and-now-i-have-an-enlarged-heart-worth-it/

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

J

Because You're DYING to Know

Hey All!

I went and got my AFOS adjusted today, they feel MUCH better. OT came with the DME, they measured for a lift and got my standing frame adjusted properly and tried a standing chair with me. That was a pretty cool experience because there is not table like on a standing frame. There is a chest strap and seat belt. I have fairly decent trunk control so my OT took the chest strap off and although I felt a bit off balance at first, it was nice to be less restricted as compared to my standing frame. Right now, however, it would not really be a practical piece of equipment due to the fact that it's about 10 pounds heavier than my current chair. After Christmas, I will be allowed to borrow it for a week or s0 to try at school where it could be used in a practical way (eye to eye with peers, not sitting for so long during the day). As far as everything else is concerned with the home assessment, we will be able to widen the bathroom door, my bath lift is ready to go, and dad is fixing the shower over the holiday. Thank you to anyone who did send up a prayer on my behalf for today :). The next step will be choosing the right lift (we have pretty steep stairs.) and then securing funding for it so, again, if you wouldn't mind sending up an extra prayer about that, it would be very much appreciated.

Now that that is over, I don't have therapy until the first week in January, which being that I am on break and that it is Christmas time is a nice thing. For the next couple of days, I will be trying to focus on relaxing and leaving behind the things that have to be done. Even if it is just for a while, I need a mental break because as I have said, the last few months have been crazy. I will be enjoying time with family, fun, food, and of course, sleep. I hope you can do the same. Merry Christmas!

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

J

Not Sure How I Feel

Hi all,

The last few months have been busy and I have gone through a lot, some good and some bad. Some I will just touch on because they are a bit to personal to share. I took a risk and did not appreciate the end result, but do not regret it one bit because I know that I can fall to the ground and I WILL pick myself back up and I WILL be okay. I've always known that, but sometimes I need to remind myself.

Anyways, about a month ago I was put back into Occupational Therapy to work on some daily life skills. This has been something I have wanted for a while. We are working on mobility related things (wheelies, going up and down curbs, transfers ect.). I look forward to therapy ever week because I know it's going to make my life easier and better and it helps that I finally have a therapist who does what he needs to do to help me. I have been let down by a lot of therapists so this is very important to me.

This brings me to my next point. My OT is coming to my house on Thursday to do a home assesment meaning, see how I get around and what he can do to make that easier, both through therapy and modifcations. I'm not sure how many of you know this, but I live in a four-level split home so I can not use my wheelchair to get around due to stairs and a few other obstacles. So, instead I crawl but, due to the problems with my shoulders and knees, this is no longer an option. My OT has told me that if we don't chage my mode of getting around the house, I will quickly lose function in my shoulders. As a paraplegic, this is something that is very scary for me. My arms are my mobility, my independence, and my freedom and I can not imagine life without that function. No, I can. I just don't want to. We are looking at getting a platform stairlift put in as my room is downstairs. This would alleviate the need to crawl up and down the stairs and my room itself (with some re-arranging of all my crap) would be accessible. So are my kitchen and dining room. We will be putting hardwood in the living room (there is currently carpet) and I will work on wheelies more to learn how to go down the step that leads into the living room. The only real problem I see is the bathroom. We have a bath lift. but if I wamt to get my chair in the bathroom there is quite the possibility that the doorway will require widening, which I'm not even sure can be done and the bathroom itself is quite small, although with some manuvering I think I'll manage. There are a thousand things running through my mind about this, but I will find out more Thursday.

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."
This lyric has never stood more true to me. Things are stressful and hard right now but I WILL NOT give up, I will keep fighting; I will always keep fighting.

J

p.s
For those of you who believe in praying, would you mind sending up an extra prayer that our house can be modified enough for me to get around? It would be much appreciated.

It's here!!!!!!!.... actually, it's been here a while

Hey all,

I know I promised pictures of my new chair. I went and picked that up about a month ago... Love it so far :) . I also got my standing frame three weeks ago... Here are some photos of the chair and if you want to know more about my standing frame check out: http://www.easystand.com. I have the Evolv.

J