The murder of a good person

Today a old friend of my named Krista Winger was Murdered. I am in total shock and disbelief. I don't whether to be sad or angery. Krista was my boss at ODS, but wasn't one of those uppy boss types. She was just part of the team. She would goof around with the employees and stuff. There was sevrl disabled employees who worked there who didn't drive, and she would give rides homes. She was just kind like that. I remember one year for halloween the ODS staffers went to a hunted woods thingy Krista. In the woods they had these bridge things, it wasn't well lit and I' m afriad heights. Krista helped across each one of those bridges. That what kind of person she was and now she's gone.


Last week I was on the bus with a Jevocial Witness, she told me that they believe that one day god will heal all the sick meaning disabled people. I hope he does heal all the sick one day,, but not the disabled. Disabled people are not sick they just differ from the norm. The sick ones are the ones that murder good people like Krista. They are the ones that will watch a two year old beat his head into a wooden cubby and do nothing about it. They are the ones look down on me because I talk and walk differently then them. While it is naturl to be angry and we can rejoice in fact Krista has live and we are alive and well

Life on Mars and Nappy (diaper) pride

Yetserday I had a really bad seizure, I was with my friend Bryan and it really freaked him out. After the seizure I was really out of it. I am so frusated with these things. They have never been offically labeled seizures. The doctors are unsure what is going on. I'm going in to the esoilipy clinc next week hopeful we can figure out something, anything.

This entire thing doesn't make sense to me. It seems to me this have been figured out four years ago when it started. The sympthoms are very pronouced should be a easy dianoses. But there is a lot of thing I don't get. Like why some people say I they want to help to help the disabled when it obvious they don't. And why helping often times trying to cure. I don't understand why one of my childhood friend contiues to live with her mother who abuses her. I don't understand why so many families are disfunctional. My family is no exception. I have had no communcation with my father since 2003. He could be dead for all I know. My family is disfuntional in other ways too. I won't go into it. But families didn't use to be this way. I just don't understand why they are now. When I have a family it going to be full of Love, respect, understanding and accepting. Like all famlies should be.

On a different note www.communitycare.co.uk/blogs/social-care-experts-blog/2008/08/wear-a-nappy-with-pride.html

Above is an artrcle by Simon Stevens a business from the UK with CP and who also gay. He writes about attending pride in London. He writed who disabed people should be proud of who they are. I have often had the same thought when I attend the local gay pride event supporting my mom who is a lesbian. I think it would be great if al the disabled people had a parade downtown once a year to show how proud we were. Maybe people wouldn't pity us so much then and try to cure us. Simon had this wonderful shirt print admiting he wore a diaper in, his terms a nappy, I to wear a diaper. In my opinion it a common sense thing to do for anyone with any degree of incontince, itmake life so much easier. Why adult wearing diaper are such taboo. It goes back to what we are told we are potty training only babies wear diapers which is complete BS. Simon also talk the work used to discribled ourself. I don't feel comfortable being called a spatsic. But the disabled person doesn't fit either. I've tried calling myself simly a Cerebral Palsy and I find it fit s quite well.

Life, It will kill you

Been a while since I wrote this this thing, my ADHD again I reckon, why I could never make a living as a writer can't focus on anything. Today two very well known people passed on. One was expected to do so she had been ill for a few years, one was not expected. He was only 50, not known to be ill, and now he's gone. I was never a big fan his, he had some good songs and I realize he had a big impact on pop culture. The shame of it is that some will remember thse taboid crap about hiim instead of his work and his humanitian contribrirtion.

His death his a reminder to us that our time on this planet is finite. It can end at anytime, for anytime reason. I've been thinking about that alot lately. Things have not been the best for me recently, to be quite frank they have sucked. I started having seizure again in March, it started off I was having them once in awhile, not ideal but manageable. It has progressed to the point I'm having seizures evryday now. Life is just to short to by dealing with these things. I need to get my seizures under control once and for all. July 24th i'm scheduled to go inpatient in OSU's esplipy clinc. I need to get these under control then get back to school, finish my masters and get my teaching lincense. I need to be working with kids with special needs that's what makes me happy and I feel I can make a difference with kids. I feel all people should try to use there life to make a difference for the good in some area. My area I've choosen is specails needs children. I need to stop thinking about and start doing it. The thing with Alex was a real wake up call for me I really wanted to help him but couldn't because I didn't have my lincense. Also because three people I thought were my friends who would listen to me and supportme didn't. But it happen and I can't change it. Now I know what I have to do. Just pray I have success in the clinc.

Family frustations

Everyone wants to please his/her family it just a natual thing. But often thing it is the hardest group o people to please. I'm finding that to be the case with my mom. She dead set against this Wright State thing. At this point in my life I don't care what people think the exception to that is my family especially my mom. My mom and I got really close got really close after my dad left and we been throught a lot of stuff together. Having a disagreement with her on something this big doesn't set well with me. But recently we haven't seen eye to eye alot of things. She doesn't like me being more vocal about my disability. She doesn't like that I started wearing diapers again. She dislikes my beard. She never been overly fond of me as a teacher.

It not like she has changed, she has aways was like this. I use to be like her, I use to believe the way disabled people to sucessful is to act non-disabled and it is, but it hollow success the kind of sucess that disappears in a heartbeat. If if you be yourself it may take you longer to achive sucess, but your sucess will last. I learned this throught this exprience though people I met. I know by speaking about my cp I can help others with it. I with I could make her see what I see. I now going to Wright State next fall is the best thing not only for me but the people I'm trying to help. I know I can't sit in Columbus I do nothing that's just not a option, especially after the thing with Alex. There are Kids out there that need help, I want help them and I feel like I can't help without my masters and my lincense. The main issue my mom is bring up is my health, yea I admit it is a issue but i has been better, with the exception of a bad spell at the end of April.

I guess all I can do is proceed as planned and hope mom comes around. I know in my heart this is the right thing. I just have put it in god's hands.

Idiot Wind

My relationship with Easter Seals which started in the 1980's when I was a student in there special needs preschool has come to a end. I wish I could say it was a mutal decison, but it wasn't, I was asked to leave. It had to do with my buddy Alex I have talked about in previous blogs. Alex demonstares some Austisic charistics that doesn't necessary nean he has Austism it just means you have to keep a eye on him. Well, last Wednesday I was volunteering in Alex's class, he was having a really bad day. He was really unfocused and acting out. At the end day Alex started to bang his head into a wooden cubbie. After the kids had left I talked to his teacher and expressed my concerned. She just blew me off, she told me Alex came to Easter Seals for a language delay and now that was fixed. now he was typical. That he was head banging for attention.
Now I've been working with kids for a while now and typical kids don't head bang for any reason. Especially when they never been expoused to that behavior and Alex hasn't. None of the other kids in his class head bang. believe me I know that class like the back of my hand. It not like I'm freaking like I've never seen this stuff abefore at the county I got a steady diet of self injury and when I was sick I cut the hell out of myself.

So I took my concerns to a survisor, she basiclly what the teacher said. I wasn't satisfide, but I was going to let it go. But the teacher found out I went to the supvisor and was outraged. To make a long story short she made a big stink and got me tossed out of Easter Seals. They say I over stepped my bounds as a volunteer. I'm not just a a volunteer, I have a degree in special ed and been around the disabled since i was born. Plus I interen there a couple year ago. The big loser in this fiasco is Alex even if there nothing wrong with him there is enough there to warrant more evelation, better error in the side of caution. But nothing will be done because the teacher is too stubborn to admit she might be wrong.


I am hurt and sadden by this exprience. I throught this teacher was my friend and Easter Seals saw me as a person not just a piece of meat. I was wrong on both accounts But I'll move on, I have there people out there that need my help. People like Alex, who unfortunly I will prolly never see again. I wish him all the best. And who knows our paths migth cross one day.

Strange days indeed

Had a interesting day today, it was Wednesday my day at Easter Seals. This boy Liam who never comes came. Liam has Autism, for those who don't know some people with Autism have trouble making eye contact with others especially with those whom they don't know, Liam is such a person. Liam doesn't know me well since I'm only there one day a week and he rarely comes anyway. What does he do he comes in to the room looks me right in the eye and give me a cute little smile, made my day. So thing go on and we did an activity for mother's day his teacher had planned, then we played. All of a sudden his mood change he was running around the room, grabbing me and ramming his head into me. His teacher said he's never acted like this ever. Liam and the rest of the class went to the gross motor room and I started to feel werid. I excused myself to go get a drink at a the water fondin. Liz went with me at the fondin I had a seizure. It was a minor one but it was a seizure. Easter Seals having no clue about seizures with there steady diet of students with speech and gross motor delays bless there hearts freaked and called the medics. The medics who respond to the call had ran on me before and knew the drill they stuck around long enough for me to sign the paper for them to leave. I believe the reason Liam was acting out was he sense my seizure coming on. We don't really understand people like Liam, I believe they have certain gifts, one of them might be the ability to percive things other don't. That two year old knew I was going to seize before I did, It' fancnating. I've been around special ed all my life never seen anything like it. I have more I want to write I start doing some work at UCP I want to tell you about that but it late and I have a early morning tomrrow, so another time.

Correction and a word on boldness

I have to comment on the story about Luke. I don't really don't know the full story with Luke, I just filled the parts I didn't know with BS to help drive my point home. That would have been fine except there a link to this blog off of my Facebook page and Luke's mom is one of my facebook friend and sure if she is a reader. So I thought I would come clean before I get busted. My relationship with Luke and his family means a lot to me, I don't want to hurt them in anyway. That shouldn't take away from my point that mental illness and self-injury are at endemce levels in the disability community and something needs to be done about it. I assure you that the rest of this thing is the honest truth, well at least how I see it

At chruch yesterday the surmon was about how god calls on us sometimes to be bold. I couldn't agree more, especially agree more especially in these hard times. Times like these call for bold ideas and actions. The same old, same old, is not going turn the econmy around. The Junor Senator from IL knew that when he decided to run for president. They called him a radcial and worse. They said he would never win. That the US was not ready for a president with his skin color. Now that senator is President Barack Obama and he's making the bold moves it takes to fix things. I think the time has come for me make a bold move. This fall I plan to move to Dayton, Ohio to earn my Masters of Education from Wright State University and become a lincensed to teach early childhood special education. This is something Ive thought about for two years, I feel the time has come to do it. Working with young children with special needs is something I enjoy. It something I'm passionate about and I feel I really make a difference in the field. I have often wondered if I would have gotten to Travis the boy I worked with at the county when was 3 or 4 and gave him the love he needed and taught him how to communicate maybe his life woud be better. I don't have everything about this Wright State figured out yet but I'll get there.

Good news and random musing

Got some good news today, about year ago I was dinosed with a condition called barrett's eshgus, it is caused by stomach juices washing back into your eshgus, if it goes untreated it can turned into esgus cancer. The doctors took a sample of my enhgus to biopchecis this week, I got the results today and the Barrett's have recessed, it's weaker now then anytime we been montioring it. Things are so good the doctor doesn't want another biotphecis in the next three years.

I heard about a student I worked with during my YATC days. He has a job working with the disabled. He's helping one his clients with reading skills and doing lots other good stuff. He even has hot little honey at home. I'm so pround of him and I'm proud of myself for helping get to the point he is. I worked hard on that and it was my pleasure because he's such a great guy. I was always considered the problem child of YATC , well the other student I was a mentortoo is now taking classing at the community college, so I guess I wasn't too bad.

I remmber a while ago a sat a lunch table in a lunch room, there was a group 6 0r 7 of us that sat together everyd ay. All of us were disabled in someway some were blind, some had Cerebral Palsy, some mentally disabled. I remember the one guy that sat there Micheal confided that his girlfriend had left him ad he believed it because he was blind. I had recently started having seizures and not started to accept it. My relationship with the special ed department at OSU would start to come undone during that time too. This would all it all it me harder then my head hit the work bench in Mr. Geyer's workshop during one of my seizures. My point is everyone at that table had problem and dreams. For time out of day we put that stuff away and talked joked and ate. Disability was the common bond we shared. Micheal once pointed out that we all had names out of the bible. Since then we have all move on to the next phase in our lives. I remember this curly haired kid who use sit across from me at that table the one in the wheelchair and arm braces. I'll pathes will cross again my gut tells me that.

One of the neat things about special ed is get to meet some neat people. One such personI've met is Lauri. Lauri has always reminded me of my mom, she about her age, she a very kind and gentle person. She's kind of a old hippie type, I saw her at comfest last year. When I was doing field work in Lauri's building, she would always stop me in the hall and ask me how I was and how my day was going. This was during when I early in my seizures days so it helped to see a friendly face. There is an adventous side to Lauri, she works with students with visual impairments, she has taken them on a trip to Washington DC and a White Water Raffing trip. Let say I have a fear of water, been that way since I was a kid. Lauri has a son with CP, I've worked with him a little bit, he a great kid with a great furture a ahead of him. I hear thru the grapevine Lauri's building is adding a special needs preschool program. I would love to teach there after I get my preschool lincense and I know her prinipal likes me from previous work there. I was always a warm and homey place, I enjoyed my time there.

Those reading this in the education know you to close to certain students. You care about all you student some are extra special for some reason. This far in my career ive moved around alot but every place ive went there been at least one student that was extra special. I remember when was at the county school there was this kid named Travis, he had CP, Autism, and profound MR. He had not had a easy live. His mom was into achol and drugs and his dad was a deadbeat, Travis ended up in foster care. Travis didn't interact with people that much, but I could get him to interact with me. I use to design sensory activies for him, he really had a ball with them. While I only got to work with Travis for limited time I would like to think I brought some happiness in to his life.

lesson learned at the school for the blind

Winter of my senior year of college I did field exprience at the state school for the blind. Sevrel things about that exprience stand out in my mind about that exprinece. The biggest is Luke (not his real name) who had CP as well as being blind. Luke was also fighting a mental illness that caused him to injury him himself. He had already injuried his face to the point of disfigurement. They put braces on his hands to prevent him from doing anymore damage. Luke's mom worked at the school and in what must of been hard time for both of them they came everyday. They kept on truckin as the Greatful Dead song. I remember Luke use come down to the lunchroom and sit with the same table everyday listen other kids while his one on one fed him lunch. He was hoping for better days and better days. Over time Luke was able go without the hand braces, even thought he needed a note reminding him keep hands on armrests of his wheelchair. He graduated from school now he on the road to a great furture. Luke taught about hanging in there when times are rough are necessary to get to better times. A lesson that sevred me well when my health went to pot. I'm still in touch with Luke and his mom there good people, that desevre the good time there getting.


I wish I could tell that self-injury among disabled people was rare, or it only that's it only happens among low-functioning disabled people, but that would be a lie. Luke is very smart. Many of my disabled friends have engaged in self-injurious behavior in some point in there lifes. I have short spell when I use to cut myself. So what is causing disabled people to take knifes and lighters to themshelfves. I don't really know for sure. I think part of it is everbofy puts such a emaphasis on being normal. And instead of our schools and parents saying the world is wrong, they try to change us to meet the world expectations. Inexcesstion they are saying we are wrong. I admit treating the disability snd making a disabilible is easier then lobbing and doing what takes do really change things, but is it really the right thing to do? Why dont er decide the same energy being used to cure the disabled to change laws and views so being disable are not a bad thing. The parents of disabled children instead of looking for werid new age treatment/cures, they should work side by side with disabled adult do fight for oppunity for there children that id real. They should be helping to build the disabilied communities there children will one day live in. Just my two cents take it for what it's worth.

Today was a good day

Been meaning to write in this but every time I seat down to do it something else on the net lures me away. Today my best friend Bryan got married. Bryan and I have known each other since we were kids. We consider each other brothers. He has Cerebral Palsy more servly then I do. He uses a power wheelchair and has limited use of his hands. In some areas his mind works slowly when come to some things, but in some areas he's the smartest person I have ever met. He has said some profound things. The women he married has spirnal bifada, which is birth defect having to do with the spinal cord and she uses a wheelchair too. They have both had some rough times,but the rough times didn't matter today. Today they where both happy and in love.


Bryan works at one the local workshops as client advocate. He preforms various functions around the workshop. He is good at what he does. One thing that makes good his job is the fact that he is disabled like his clients. The clients realize he is disabled, so they more prone to listen to him. He also knows better how to sevre them because he recives services himself. He has staff at home that help him. Last Sunday my pastor was saying that it is so easy feel close to Jesus because we can relate him. Not that we relate turn water to wine or rising the dead or curing the sick. We can relate to his suffering because we have all suffered at some point in our live. Another example he used was the Wizard of Oz the big green head with smoke and flame that helped dorothory and her friend get it was the feble man behind the curtain the man the man they could relate too. I feel that part my affectness as a teacher is that my students can relate to me. In the same token I came relate my students I can adjust myself to suite them better. That's one way my seizures my benefit me it might give me insight into my students.


There are certain unwritten rule about disable people. We not suppose to go to college, get married, have kids and others. My generation seems intend on breaking all the rules and I like it. Power to the people. Bryan married another disabled person that took guts, your more likly to gets critized that way. But critism doesn't mean anything when your in love.

Spring has sprung be sure not to step in easter bunny poop

Spring offically started yesterday. Spring is my favorite season, to symbolizes rebirth. During winter everything is so dead, but in everything comes back to live. I know in my neighood no goes out in the winter. When spring comes you kind of get re meet your neighbors as people get out walking dogs and working in there yards. If you live in the midwesten US you know we have had some amazing weather the last week. I volunteered at Easter Seals on Wednesday and we took the kids outside it was so much fun. Kids Have a ball whenever they are outside and the weather was perfect sunny and in the low 70's. I have bonded with this kid named Alex at Easter Seals. I walk him to our room from our his bus each day I'm there. He does not have much language but while we walk he gives me a little smile like "Hi Mr. Nick glad your here today"

Taking the kids outside reminded me of a couple years ago when I use to be employed by Easter Seals. Yes, folks once upon a time I did have a actual paying job. There was this boy name Justin, whenever we where out on the playground he would get my attention and have me push him on the swing. This at the old Easter Seals building the one I went to when I was a kid. Justin's father was in to drugs and while he was killed by the police. Justin was to young to know what was going on, but he could sense something and he knew daddy wasnt there. I think it benefited for having me there a stable male influence. Everything in my heart in my sole is telling me I should make a career out of working with special needs kids I enjoy it so much and not braging but I'm good at it. I just not sure how to to do it. There Wright State thing but there so ,any things that comlicates that. I'm about ready to do it and let everything be damn. If anybody reads this thing lets me know

Worrying

I started this blog because blogger ate my preivous blog, hopefully "Disabled by Birth Abnormal by chioce". Hopefully this one this one won't meet the same fate. Let's leap into today's topic worrying. I had friend in college who worried alot, I felt to much. She worried money, school work, not fitting, not appearing "normal' enough. I must admit I judged her for that. At the time it was smooth sailing for me, school was going well, I had a clear vison of my furture.

How times have changed. Im the worrier now, I'm unemployed with no propects. I'm short on money, forced to live on SSDI. I have had numerous health problems over the last few years. I have the heir brained scemed to get life back on track nobody thinks will work. Thought it all I've remained happy but I worry alot. My friend on the other hand has a good husband and baby boy that is fresh out of oven. She lives in Canada that mean she get better healthcare then she would in the US. The pay for her to take a year off to care for her son. (Why don't US moms get that?) She still worries but not as bad. My point is her worrying was caused by her cirstances, just like mine is now. During life we go through cycles you good time and not so good times. Right now I'm in not so good time right now. Don't get me wrong there are definitly some good things in my life right now. Volunteering at Easter Seals is definitly a good thing, it beings me so much joy. I guess the best way describe my life right now is I have happiness, but not satisfaction. I'm happy but I want more. I know the things I do make a different, but I want to make more of a different. I know I will get that satisfaction just have to keep pluging and wait for things to cycle my way.

On anthor topic I've been dishearten by what I've seen posted be other disabled people on the net. Either they willing to do whatever non-disabled want or they totally radical to the point that liken all non-disabled people to Hitler. Neither is correct, I think why the disabled right movement hasn't gained traction is there is no sense of community among the disabled. With African Americans they had there own neighoods, schools, business, and colleges. That provided with a power they used to help them gain there rights. We have none that. I would love to see a group of disabled people choosing to live in the same neighood or disabled children attending a school run by disabled adults, or a business run entirly by disabled people. I'm not saying we cut ourselfes off from non-disabled people. We need contact with all kinds of people. We just need realize who our own our. That community atmspete exist somewhat among the Deaf, Blind, the low functioning disabled and it's devloping among Austisics. But it's need to be more to be more widespeard and more high functioning people need to be involved. Sadly what Ive read most disabled rights groups are into assiminlation. They frown upon diapers and such things that help the disabled because they are not "normal" I'm disabled that automaticlly doesn't make me normal doesn't matter if I wear a diaper or not so I will wear one and if I have a accident I will have a smaller mess to clean up. My mistake we are suppose to pretend we don't have accidents. I guess that was my bad. :)