It's a Love Hate Thing

I posted this list in a forum and thought I would share.


I hate that I am sitting here typing a whole list of things I hate
I hate that my house is not wheelchair accessible so I have to crawl around
I hate that doctors cut nerves in my back to reduce tone and now I can't tell when I have to piss until I REALLY have to go
I hate that insurance will cover next to nothing for me because I was born this way
I hate that people assume that I have it easier than someone who lost there ability to walk later in life. Different, yes. Easier, no.
I hate that I don't get as much therapy as I feel I need/could benefit from
I hate that I still need my wheelie bars
I hate that so many doctors, therapists, and other professionals have let me down
I hate that my family and I have to fight for everything I need
I hate that my shoulder hurts all the time
I hate that my school will not accomadate my scooter so I can give my shoulder a break
I hate that my school will not accomadate my standing frame for pain mangement because it can be used at home
I hate that everything I need costs so fu%$cking much
I hate that my OT has to go have a meeting with my Resource teacher to explain to her why my stander needs to be at school
I hate that I could have moved to a school where the stander could have been if the Resource teacher had not lied and said the school was doing everything they could to accomadate me
I hate that this list makes me cry
I hate that there is a kid with a brain injury in my school who likes to throw it in my face that I will never walk and he will among other things and that people say that it's ok that he does that because he has a brain injury. (not dissing people with brain injuries)
I hate that this shit is what I have to worry about at 17 years old

I love that I was blessed enough to have a family member provide me with the money to buy a standing frame and awesome pink TiLite ZRA
I love that I get that one hour of OT per week
I love that I finally have a therapist who cares about the job he does
I love that he has never once told me I am not going to do something and been nothing but encouraging which is a lot more than I can say for a lot of therapists and doctors previous
I love that I function at the level I do
I love that I will be fully independent eventually
I love that this chair has made me who I am
I love that I am more compassionate and less judgemental because of the chair
I love that this chair has made me want to be an OT or ST or Social Worker so I can help people. There's no one better than someone who has been through it
I love that I have the faith to believe that I am the way I am for a reason and that my being in the chair has a purpose It sounds corny but it's what gets me through the day sometimes

Gotta roll.  Have perceptual testing in OT tomorrow and it isn't gonna go very well if I don't get some shut eye.

As always,


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


J

Update Time

Hi all,

I have an update regarding my last post.  At OT Thursday, we had a long chat about the current situation at school and came up with a plan.   Apparently he DID tell them it was not required they accomadate the stander. It took all I had to let him explain because I was already so frustrated but, he said this after being told by the Resource teacher I would be able to stand a maximum of 1 hour a day.  Not even close.  Last semester I would have been able to stand for a maximum of 4 hours a day and this semester a maximum of 2 hours a day (1 hr. first thing in the morning during Resource and an hour during lunchtime)    The Resource teacher told him she felt it should be at home because it takes 2 hours of standing to improve bone density.  My OT says that yes, I should be standing more than my current 1-1.5 hours a day but, that if I was only tolerating 1-1.5 hours and there was space for there to be 2 hours of standing when I can tolerate it, he does not see why it shouldn't be at school.   I currently have about a 4 X 6 space dedicated to me for all my AT.  My OT sees the potential to get rid of my scanner and printer and keyboard (we made a list of all the AT had and nixed what wasn't crucial) so that we can downsize to a smaller, taller table to create space for the stander and I would still be able to use all my AT while I'm in the stander therefore meeting both my goals and the schools goals (One of their concerns was I would not be able to use my AT while in the stander).  My OT feels the positional change is crucial, especially by lunchtime to combat pain and muscle fatigue. So what next you ask? My OT, my mom and dad, the Resource teacher, and myself will be meeting on February 10th to discuss the whole move AT get new table option.  Basically, OT is coming in as a mediator because he says this whole situation has become a way to personal, he said/did she said/did situation and goals are not being met because of that; emotions have become the overriding factor.  Emotions have to be limited at this meeting and I understand that but, it is emotional because it is personal.   I will update after the meeting to let everyone know how it goes.

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

J

Just Me

This is how I feel right about now. That I am just me and I don't matter; the professionals who work with me could not care less, to them, it is a job and at the end of the day they get paid, they go home. Who cares about the person they were supposed to help?  I have been trying to wait to blog until something good happens because I feel like I'm just a negative person and you really don't want to read this. I'm sorry.  The last time I blogged, we were in the process of trying to switch schools.  That blew up in my face yesterday.  About a week ago, my mom got in touch with the vice principal of the school I wanted to move to, he sounded encouraging and said he simply needed to find out what my program was like (EA time, assistive technology needs etc.) to make sure he would be able to accommodate for that.  He phoned the VP of my school yesterday and my VP made a huge fucking deal out of it.  He called my mom and all he asked was "is this happening? Do we need to move her whiteboards?" Not why are you leaving. Not is there something I can do to make this better. Nothing.  He told the VP of the school I was going to go to that they were doing everything they could to combat the situation with this other student.  Bullshit.  It's he's got a brain  injury, get over it and ignore him.  You remember a few months back I received my standing frame. We wanted it at school to combat shoulder pain (sitting all day makes it worse).  They said they did not have room for it just like they don't have room to accommodate my scooter. Instead, I had to go out and spend $6000 out of my pocket on an ultra-light manual chair so I didn't kill my shoulder.  Anyways, my OT called the school in early December and talked to the Resource teacher to find out why the standing frame could not be accommodated.  The resource teacher claimed she again, did not have the space.  My OT proceeded to ask if we could move any of my equipment into another room to make the space. No. He said OK and got off the phone, later telling me he didn't want to push it because he didn't want to create any more problems for me. Fair call.  Fast forward to yesterday and the call my mom gets from the VP of the school I wanted to go to.  My mom tells him this about the standing frame and he says that the VP from my current school and the rest of the admin team feel it is better used at home. Oh yes, I forgot. You are a physical/occupational therapist. Stupid me.  My mom asked him what made them qualified to make that choice and he says to her what makes you think you're qualified to make the choice it's NOT better at home? Who the hell do these people think they are? I am the user and they are my parents.  They know what my needs are as do I because this is my life and we have been living it the last 17 years.  Anyways, mom says it actually was not me, it was her occupational therapist who felt it should be at school.  He proceeds to tell her that he was told by my current school that my OT said it was not necessary to accommodate the stander at school. WHAT?! That's really funny because just last week when I told him I was ready to move schools, he said if it was just because of the stander he was ready to put up a fight to get it there.   Do these people think we're stupid? The only person from the school who has spoken with my OT is the Resource teacher.  This is what she does.   She twists people's words to fit where SHE wants them so she doesn't look bad.  Anyways, to sum it all up because my current school claims they are doing everything they can to accommodate me, the school board will not support the move to the new school because they claim the new school will not do anything differently( if I moved I would be removed from the student who is causing me problems).   This is stupid because obviously my current school is going to claim they are doing everything right so they don't look bad to the school board.  What they really are is a bunch of useless, lying, unprofessional people.  If we move without the support of the board I lose EA time, transportation and possibly, my AT (that one I'm not sure about).  So for now there will be no moving and my mom has been in touch with my OT to find out exactly what he said to the Resource teacher (I know he didn't say what she says he did but, what I feel think and know doesn't matter because remember I'M the liar and I'M the one with perception issues) and she has also let him know that she does not want him communicating with the school right now because of everything they are saying that he said that he didn't. actually say so it's really not even worth his time or ours for him to talk to them.  My parents have a meeting with the VP before the start of the second semester and if things do not improve, we will move to the Catholic School System or do home bound teaching but, this would mean having to give back my AT and purchasing everything from software to hardware out of pocket or getting the Catholic board to submit requests for the things I have with the Public Board and waiting 6 months to receive
it.

Sorry this is so long but, what really gets to me is I didn't ask to need all the extra support services in my education.  You don't want to do your job because it's to stressful or hard? Welcome to my life.If they would just help me for the next 10 months it would be done. If they would just SAY they can't accommodate the scooter and standing frame instead of lying about it, I would be supported by the school board about moving schools and I wouldn't be their "problem" anymore.  Do your job or get a new one.  One that does not involve helping people or perhaps one where people have the pleasure of not knowing you exist period.

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

J

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