Day 338: Back to School IEPS, Advice From Someone Who Had Them

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Note: The information in this post pertains to US public schools. Many other countries may have similar procedures but I am not familiar with them.  None of what stated here should be viewed as professional opinion of any  kind. It’s been a bit since I was in public school and I am in no way shape or form a lawyer so if you suspect your child’s school isn’t toeing the federal line, seek advice from a lawyer who specializes in the Americans with Disabilities Act.

Individual Education Plans, if you are the parent of a school-age special needs child you get familiar with these real quick. For those parents of special needs kids whose kid is just starting school,it’s basically a   chance for you to get together with your child’s teachers, representatives of the school board and any specialists who see your child during the school year. These specialists can include but are not limited to, an Occupational Therapist,Physical Therapist, and Speech  Therapist. If it is your child’s first IEP  it will probably just be your child’s teachers, the  principal, and the Special Education Coordinator for your county. The coordinator can, and should, be able to set up assessments with many specialists whose help can your child’s learning environment .

Here are some things about the IEP process you may not know. The first and, in my opinion, most important, thing to know  is that your child has the right to be present at any and all of their IEP’s. I started attending mine in second grade and continued   all the way through high school. You as the parent may not think it’s a good idea depending on your child’s disability and level of understanding but you should know that the school can’t refuse your child’s presence, even if it means they have to leave class early.

Your child has the right to add things to the document while in the meeting. My fourth-grade teacher had a wonderful idea to assign me an in class helper from my classmates who helped with everything except lunch. going to the bathroom, and pushing my wheelchair while outside. I still had my individual adult aide for the stuff the kids couldn’t help with and it helped me feel more normal.For reasons I still don’t understand  the lady who became my aide in the fifth grade totally refused to cooperate if the idea was continued. It didn’t dawn on me until last month  that I could  have called for a revision to my IEP and had it added and then she would have been forced to comply, like it or not.

An IEP is a legal document which everyone who attends the meeting must sign before the meeting can end.  IF anyone tries to tell you don’t have to sign or ” they’ve taken care of it” call them on their bullshit because that’s what is.(The county coordinator tried to pull that on us once, we were not amused)

Your child has to sign  if they are there but if they can’t you can sign their name and put signed  by with your name and parent or guardian in parentheses beside it.

One final thing I’d like to say is that even though it is always up  to you the parent whether or not to include your kid as an active part of their IEP process. I strongly you to do so if they are not developmentally challenged.They will have to be their own advocates one day, they might as well start learning self advocacy when your there to back their play.

Day 337: To All the Parents of Special Needs Children Who are Mourning a Child Who Isn’t Gone, It’s Ok

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My name is Rachel. I don’t often put my real name in blog posts but these particular words deserve more weight than that of the blogging pseudonym  I fashioned for myself, they deserve the  name my parents gave me, because even though  I often write in other names, even answer to names  so far removed from the name they gave me that a stranger wouldn’t recognize both of them as belonging to the same woman,  I love my name and my family. My name is Rachel, I’m 31 years old and I have spent every single day of those 31 years with Spastic Quadriplegic Cerebral Palsy.

I’ll tell you a secret, this isn’t the life I would have chosen for myself. If I had been given a choice I would walk, skip, jump, just like everyone else. I would have marched to cadence like my mother before me. I  would’ve gone  to swing dance events with my  younger sister and with our partners we’d turn heads even when we didn’t win.

I would’ve eaten, slept, and breathed, fencing.  I would’ve climbed trees and learned to play the cello. There has not been a day since I was four years old that I haven’t mourned the loss,  or rather the futility of, these dreams. That girl named Rachel never lived but I see her ghost in the oddest places. Every time my sister got stranded or needed a ride she got into a car I still don’t have to pick her up. She got a job at sixteen , the real me, the living me , hasn’t had taxable income from a job in my whole life.

My point in telling you all this is not to whine about how terrible my is life is, it’s not terrible. My family loves and supports and encourages me to be as independent as possible. They encourage me even when it scares them. I wouldn;t have chosen this life but in living this unchosen life I believe I have impacted people’s lives in ways I might not have had the opportunity to if I were able-bodied.

I tell you this so you know its ok to be sad. You’ve spent months picturing this child’s life in your head, by the time they are born you’ve sent them into adulthood at least a dozen times. Then something changes and that perfect picture you built of your child’s life seems littered with roadblocks and pitfalls that weren’t there before. How will others ever see your child for the wonderful, beautiful spirit they are if they have to look past all the things that make them different first?

They are out there. Finding them may feel a little like panning  for gold but don’t give up. Take advantage of your nearest Early  Intervention program. That is still the first thing out of my mom’s mouth when talking to parents of special needs kids five years old or younger., they can teach you and your child healthy and safe ways to deal with tantrums among other things. Just because toddlers can’t quite grasp why they are different from their friends or sibling doesn’t mean they don’t know that they are and that can be very upsetting.

My final piece of advice, don’t be ashamed to say this is hard. As the parent of a special needs child,you will be that child’s primary voice for at eighteen years or longer, that isn’t anybody’s idea of a cake walk. If you find yourself overwhelmed by this task please seek a support group or a therapist, to effectively help your child you may need to help  yourself first and anybody who belittles you for showing human fragility probably couldn’t stand a day  in your shoes anyway.


Day 334:So A Podcast is More Work Than I Thought

I told a friend of mine about my idea for Gimp Radio… She was ecstatic and immediately sent me an article detailing 27 steps for getting a podcast off the ground and recognized by iTunes. It was a lot of information and I think I may have undertaken a much bigger project than I realized but I’m still going to do it. Another friend reminded me of something Mother Teresa once said: “we can do no great things, only small things with great love.”

Gimp Radio is my small thing. It’s going to take some time but it’s worth it. The disabled community deserves to have its voice heard its concerns given as much weight as those of our able-bodied neighbors. Historically  we have been told that in order for our concerns to have any validation we must convince an able-bodied person to act as our voice first, it is 2016 and that is a total load of crap. We deserve to have our own stories told in our own voices. That is why I believe Gimp Radio is so important. In the 21st century, I have seen many disabled people try to minimize the space they take up, I have caught myself doing it numerous times. I have the right to be here, I have fought and struggled mightily to master skills that many people take for granted and yet I still apologize for my existence, I have changed routines in my life to better accommodate other people but when I stop and think about how many of those people would change their routines regularly to accommodate me the list is woefully short.

If anybody asks me who my biggest advocate is the answer is always going to be my sister. When we were teenagers and I apologized for needing help, which I did a lot, she would tell me to stop apologizing for things I couldn’t change. She got to the point where if I apologized she would refuse to help me for 5 min. and every time I tried to apologize after that she would add a minute. She still does that and it still drives me crazy but I love her for it.

Gimp Radio is coming. It may take me a year or two to work out all the details but it is coming. I will be overjoyed if five people I don’t know listen to it because even five people make it worth doing again and again and again. If I can fundamentally change the way five people view, interact with, speak to, the disabled community then they can go on and change five more with their own influence and they can change five more, etc. People believe that social revolutions are the results of massive change but every great movement, every revolutionary act, started as a single person doing a small thing with great love.

Author’s Note: The friend who reminded me of Mother Teresa’s words is my friend Beth who I’ve  since known since summer camp and who was also my very first college roommate several years after summer camp . She writes over at In Case of Fire, Use  Stairs about many things including her faith and her take on life with a disability.

Day 333: Gimp Radio or Help Me Name A Podcast

I spent Sunday afternoon listening to National Public Radio and a thought struck me. We, as a community, have always had unique struggles and challenges which we talk about amongst ourselves and our close family and friends. We feel hurt, angry, and sometimes bitter when the able-bodied world at large seemingly ignores our struggles and difficulties. Sure, the people closest to us know and hopefully, try to understand our perspective to the best of their ability and they might pass some of that information on to other people they know but what if the disabled community as a whole had a radio show, a podcast where a group of people with varying disabilities explained and/or discussed social trends and current events that affect people with disabilities. For example one of the first topics could be what does accessibility mean for you? Accessibility means different things to a wheelchair user  then it would to someone who is blind or deaf or is on the autism spectrum. If you asked an able-bodied person the same question chances are they would assume that a wheelchair ramp, grab bars in the bathrooms and maybe wider doors and an elevator makes a place far as I know none of the movie theaters in the area in which I live have audio descriptions for the blind to describe the scenes in between the dialogue even though I know technology with exists that can do so. Right now this is just a seed idea but if it takes off I would love to have contributors from around the world, to learn what disability culture looks like in other countries. Right now I’m trying to come up with a name for this podcast. Oz came up with Word On Wheels which I admit is catchy but I would like to have a name that is more inclusive of all disabilities so I hesitate to use Gimp Radio or Crip Radio which are the first two ideas to cross my mind. Another reason I hesitate to use those is because some disabled people might be offended by my using them even though I only mean to reclaim the words that able-bodied people have used as slurs against us. At this point about I will take any and all suggestions, what would you guys name it?

Day 332: Stories from Childhood or Why I support #BlackLivesMatter


As far as I know this is not an actual picture of Sugar


My family says I have an elephant’s memory. but I do forget things. I can’t even guess what I had for breakfast last week. I remember important things,birthdays anniversaries  but not just dates, anything my mind labels important, though rarely am I aware of this labeling at the time.

I am four years old and we are visiting Mr. and Mrs. Cole, church friends of my grandma, shortly after  my grandpa’s death. They were the first black people I remember knowing. I think Mrs. Cole was the person who gave me my first glass of sweet tea. Their house was small but filled with beautiful antique furniture (Mr. and Mrs. Cole’s house was also my introduction to the proper usage of doilies and coasters) and a beautiful wooden bead curtain that was the absolute definition of adventure when I was four years old.


I cannot say for sure if I ever knew what Mr. Cole  did for a living, for some reason my brain says he was an electrician or plumber but I can’t remember how I came to have that information. I thought he was a retired pirate. It was Mrs. Cole’s bead curtain that put the fantastic notion of piracy in my head, that and the fact that I never remember Mr. Cole saying much other than hello when we came to visit. His favorite chair sat in front of the biggest window in the living room so that he was almost always cast in shadow, in fact, it wasn’t until relatively recently that my memory added enough details to recognize him as human rather than as someone formed entirely of shadow. It was his quiet demeanor that convinced me of his former profession. If you had spent your youth as a pirate on the high seas and then decided to settle down you would not talk about yourself much, piracy is, after all, a criminal offense. I believed that he brought home all that beautiful furniture and the wondrous bead curtain as gifts for Mrs. Cole. I did find out much later be the far more mundane story of how she actually got the furniture but I am still quite fond of my outrageous tale.


The first biracial person I ever met was a young lady with skin the color of coffee  with cream in it. She had one blue eye and one green and I thought she was gorgeous. She was the niece of one of our neighbors at Fort Bragg who came to visit her cousins every summer. She was the first deaf person I ever personally knew and even though I was horrible at signing we somehow muddle through it because thankfully I could understand more sign than I can actually produce so our conversations might be described as a person who speaks a language fluently talking with a person who only knows the pig Latin version of the language but Tonya was a good sport who never made me feel bad because my physical limitations made it difficult for me to communicate with her. Our conversations very often resembled a game of charades, much to everyone’s amusement.The family who lived right next to us had a cat that totally fascinated Tonya. Sugar was white, polydactyl (he had extra toes)  with one blue eye and one green, just like her. who was also deaf, just like her.  She doted on him every time she visited.


It has been years since I’ve seen or spoken with Tonya and Mr. and Mrs. Cole died years ago.Whenever I post or share something supporting #BlackLivesMatter it in their faces that I see first. People whose acquaintance gave me some of my first lessons in kindness, politeness, bravery and adventure. I worry about Tonya on a daily basis. I find myself hoping that wherever she is her disability protects her from the epidemic of madness we are currently living in. I have found myself hoping that people who might otherwise hurt her are careless enough to mistake her for white. I worry every day that instead of being a shield her disability will instead paint a target on her back, be a contributing factor to her victimization. I haven’t seen her cousin Chris in ages either, my neighbor, the boy whose loose tooth I knocked out when I swung wide of the punching bag he was holding for me and hit him instead. The second boy I ever had a crush on, even though he was predictably clueless.Whenever there is some new occurrence of racial violence I tense up, worried that it will be his name under the picture of a young black man  whose face would be unrecognizable were it not for dental records. Every time a light-skinned black woman is assaulted I breathe a sigh of relief that her eyes are the same color. I thank the universe every day that Mr. and Mrs. Cole did not live to see this insanity. These are the people I love. This is why #BlackLivesMatter matters to me.

Day 331:#CripTheVote,Nothing About Us Without Us and #BlackLivesMatter

If you haven’t seen this video yet I encourage you to do so right now. I learned a few things that I didn’t know even though I have been disabled my whole life. I will tell you that it is largely fear of losing my disability check which has kept me and Oz from getting married… What would happen if he got laid off and our family didn’t even have my check to fall back on? My parents routinely refer to him as my fiancée but we’re very careful to avoid such phrasing when talking to someone who works for the Social Security office because we’re afraid they will penalize me for anything that even remotely sounds close to a declaration of intent. The part about it being legal to pay disabled workers far below minimum wage is also true. Goodwill does it all the time and then pat themselves on the back and says that disabled people should appreciate the fact that they have any jobs  at all. I am not making that up the CEO of Goodwill actually said that in an interview I saw within the last two years. A doctor once told me that because of the differences in how my body functions the reason it felt like doing every day normal things felt like it took me 10 times more effort than it took an able-bodied person to do the exact same thing was because it actually did, it wasn’t something made up in my head.


If we went by that logic disabled employees would shock most of their able-bodied bosses if they asked to be paid based on the amount of effort it takes them to complete a job. We are not asking for that,  though, we are only asking to be paid comparable wages to those of our able-bodied co-workers. The minimum wage for able-bodied people is arguably not a living wage but it is a whole lot closer than $.18 an hour which is what the Goodwill Corporation gets away with paying some of it disabled employees based on timed “performance evaluations” which consist of putting as many clothes on hangers as possible. Someone standing over them with a stopwatch and they are allowed three mistakes before their pay gets docked. I don’t know about any other physically disabled person but for me personally my spasticity comes out the worst in situations when I feel like I’m being put on the spot which means that if I were their employee the worst time to assume an accurate representation of my abilities would be when someone is standing over me with a stopwatch.


Many kinds and well-meaning people have suggested Goodwill as a possible place of employment for me over the years. Prior to learning about how their performance evaluations are done I have always said thank you but I’d rather not, citing the fact that I find their commercials featuring disabled people to be patronizing and smacking of what I would term as a “benefactor complex,” the commercials always seem to say “look at us aren’t we wonderful for deigning to give this inferior person busywork and a pittance of a wage while we exploit them because half of them don’t know any better and the other half are too grateful for the smallest crumb to complain much.” That was before I knew about the practices now I would probably slap someone in the face.


In truth, I do not think I have ever felt like a presidential candidate truly shared my concerns. Say all the negative you want about Pres. Obama but when he was during his town meeting tour he helped a caregiver on her work shift so that he could make the time to talk to her. He changed the man’s sheets, made him lunch and had a conversation with both of them. Not a single president before him has done anything like that. Not one. A blind deaf man (who I believe is a lawyer) was invited to the White House and Pres. Obama didn’t even blink when the man requested that they used a special keyboard which would change the type text into braille that the man could then read even though the President had no experience with the device whatsoever prior to meeting this man.


The only way I currently see for the White House to be seen as taking the concerns of its disabled citizenry as seriously as they must be taken is to elect Bernie Sanders for president. Donald Trump does not care about anybody but himself and  sure as hell do not care one iota for the disabled community. As for Hillary Clinton I can’t trust her path as far as I can throw her, she may give lip service to the disabled communities but it is mediocre at best and she only started doing so to keep up with Bernie.


To able-bodied people who may be thinking why should I care about these issues? I say two things… 1 Someday they will be your issues too,you are one illness, one accident, one choice, from being a member of our community. Perfect health is a fleeting and fickle thing. 2 We may be the largest minority in the world but we are still considered a minority. We have been screaming for equality for years that the able-bodied majority talks over us all the time. We need able-bodied allies willing to tell people to sit down shut up and listen. The great thing about alliances if they work both ways, help me fight my fights and I will be in the trenches with you over yours. The 1% has a great majority of the 99% fooled  into thinking that labels really matter, there are people within the 1% who will step on our necks and crush us like ants and they don’t care what color our skin is. There are so many good and necessary movements going on right now that can only be made stronger if we collaborated, if my movement became your movement in your movement became mine.


Black Lives Matter. Every bit as much as mine does. Police violence against people of color for no other reason than they are people of color is wrong. As citizens of the United States, we talk a lot about freedom but the sad fact is that some of us are much better talking than walking. Our history has given us this idea that all men are created  equal in this country. The sad fact is that it has fallen short and forgotten to include a great many of its citizens. I sure as heck did not feel as though I am treated the same as an able-bodied person. It’s 2016 and women still are not paid on par with men who have the same skill set. That’s not  equality. A high school cafeteria worker shot while reaching for his license and car registration just because he also happen to have a firearm which was legally registered to him in the same glove box as the car registration is not equality. For a long time I have done my best to keep my blog politically neutral but sometimes all silence does is help the wrong side win so far an indeterminate future my blog will be exactly as political as I feel it needs to be. Nothing About Us Without Us. All Of Us.

Day 330: This Public Service Announcement about Disabilities Has Been Brought to You by the Tennessee Renaissance Festivaland Queen Elizabeth I


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Gideon and I and Her Royal Highness Queen Elizabeth who is explaining to a litte girl off camera who had petted Gideon without asking what a service dog is and why it is never ok to pet one without asking first! Huzzah for community support!

Rarely do I  consider my wheelchair an object which gives me a certain level of privilege and I’m not referring the kinds of things a lot of able people see as privileges like being first to board a plane.  I’m talking about the kind of privilege that people refer to when they address white privlage or socio-economic privlage. Believe it or not there is a certain  privlage that comes with being visibly disabled. Surprised? Me too.

Tennessee holds its annual  Renaissance Faire every weekend of May. This year was the first chance I had to go in years plus there was the added bonus of getting to go with a childhood friend who offered to drive us out there as a birthday present before she moved out of state.Dear Friend struggles with mental health issues and has a service dog to help her deal with them. Dear Friend is also not noticeably disabled other than her mental health. The employees and actors of the Tennessee Ren Faire were wonderfully kind to both of us as far as I saw. Many folks went out of their way to ask if Gideon had enough water which was a good thing because somehow extra water didn’t make it into the day pack. (Bad SD partner  bad)  It wasn’t until driving home and talking with Dear Friend that I realized she had spent a good portion of the time we weren’t together being hassled because other visitors to the Faire assumed that she didn’t need a service dog and that K*  was just a pet she snuck past in spite of the clearly stated no pets policy.

DF and I  have known each other since she and my sister started the eighth grade together. Her issues are just as real and ever present as mine are even though people who do not know her as well as my family does may not see them at all. To those people who would demand proof of a psychiatric disability from a complete stranger I have more than a few things to say. The first one is how dare you? You have no idea the kind of road a person has to travel to feel up to doing whatever “normal person” thing you happen to encounter them doing that day. My friend and I plan this particular trip for weeks in part because she has difficulty in crowds. She did it because it was something important to me. She probably knew that some ignorant fellow patron would gripe that she didn’t “look” disabled and it wasn’t fair that she got to bring her dog while a complete stranger was so inconvenienced because they had to leave their dog (who has probably never been in a crowd half as large and therefore would have very likely been freaking out anyway) at home. The second thing I have to say is that disability whether it be physical or cognitive or psychiatric has no particular look. In that way disabilities are similar to chess, there are an infinite number of chess games. For every disability with a label there are an infinite number of permutations for how that disability may manifest. I know of some people who are obviously disabled but whose doctors cannot find a label which includes all their idiosyncratic difficulties and therefore they’re given only the vaguest terms like “motor delay” or “dysfunction” or “brain injury”. I know other people who have multiple diagnoses to describe their difficulties each including at least two three syllable words.


The third thing I would like to say to people who demand proof of a stranger’s disability you be careful what you ask for because you just might get it. My personal disability is fairly straight forward I was born two months and 10 days premature at a hospital that isn’t much more than glorified Band-Aid station. They had no neonatal intensive care unit to speak of and so I had to be transported to Dallas which was two hours away. Whenever anyone asks I say it was oxygen deprivation which caused my brain damage but in truth nobody is quite certain whether it was oxygen deprivation or too much oxygen during the ambulance ride which caused the brain damage which resulted in my disability. The point I am trying to illustrate by telling you that story is that each persons disability and the back story for it are extremely personal things which some people are more comfortable sharing then others. I have been in public speaking situations about my disability several times in my life so for me personally sharing isn’t a problem. I can talk for several hours and you can ask pretty much any question you could possibly think of and so long as you were asking it from a place of genuine curiosity and an effort to understand and not some sense of voyeuristic entitlement that makes me think you believe I owe you the answer, I will answer with as much detail as I can muster, which in some cases maybe way more then you expected. Every person with a disability is an individual and it should not be assumed that they are comfortable with being an open book.

Author’s Note: Dear Friend is used in place of the person’s name.  K is the first of her dogs name.