Posted in service dog

Day 344: Personal Space in Public Places or Service Dog Etiquette for Those Who Didn’tListen the First Time

Service dogs in public are working!I can’t say it any plainer. I don’t care if you can’t tell or not, if they are in a public space they are working, end of story. Most service dogs wear vests that say things like “working dog do not pet,”but American federal law does not require a dog to wear a vest or the owner to carry anything identifying the dog as a service animal, basically we use the vests to label our dogs service animals to save ourselves the headache of having  a major argument about the dog’s presence every single time we leave the house. If you see a dog in a public space where dogs usually aren’t, vest or not, they are probably working. If you are interested in the dog’s presence, by all means. talk to the person on the other end of the leash. You may want to pet the dog, ask first, and realize that the handler is under no obligation whatsoever to allow it. Why? Service dogs in public are working. Even if all they are doing at that exact moment is sitting next to their handler or laying under a table. You do not know what this animal is trying to do and therefore even brief casual petting by a stranger can distract the dog and possibly put the human at risk. A good rule of thumb is to totally ignore  the dog’s presence as much as possible It’s hard. I’ve had to find something,anything, for my hands to do so I wasn’t tempted to sneak pet another handler’s dog after they sad no, respect the no anyway. A service dog is an extension of the handler’s personal space . You don’t like strangers crowding your personal space, do you?Imagine you are at work and people are constantly calling your name,  snapping their fingers, whistling, etc, trying to distract you from work. Chances are your employer is not going to be happy.However. if a service dog handler declines a request to pet our partner this is the response we often get”it’s just a dog,why can’t I pet him/her , often followed by an attempt to “sneak pet” them after I said no. It’s not just a dog. One of Gideon’s task is helping me cross streets safely(no I’m not blind but I have gotten hit while crossing the street in my wheelchair(before I got him) so now I have him check for cars even when I should have the right of way as a pedestrian. If some were to sneak pet him at the wrong moment while crossing a road that could be very bad. My personal policy about letting a stranger pet my dog while out in public is this, assuming you asked first, 80% of the time my answer will likely be yes, if I said no when you asked and you try to sneak pet either of them(my Aussie pup is going to start public outings soon) I will make as noisy as scene as possible , expect the same reaction if you don’t ask at all.  You have been warned.

Author’s note: I will say again, I sometimes let others pet my dogs while they are in working gear.That is my personal choice,do not assume any other handler will do the same.

my-sig-23

Posted in Politics

Day 343: A Badger Goes to Battle

Image result for hufflepuff crestThis blog was never meant to be about national current events or political commentary it was never meant to have a specific focus or niche even though I have never made any secret of my disability or anything else. Then the 2016 election happened. Bernie Sanders happened. The North Dakota pipeline and the protest at the Standing Rock Sioux Indian reservation are still happening. President-elect Donald Trump is actually happening unless the electoral college refuses to back the popular vote, something which they haven’t done in years. In spite of being good at public speaking, I never wanted to be the person behind the podium or on the stump saying, “hey, listen to me!”The thing about drawing attention to yourself is that if you make enough noise people actually look. They pay attention to the words coming out of your mouth, every single one and suddenly every little misstep you make, no matter how little, is noticed. The margin for allowable human error becomes seemingly minuscule. 2000 military veterans showed up at Standing Rock Reservation to be a human shield for the pipeline protesters.. Pick on someone your own size big oil. I have never sought to be a revolutionary,  a rabble rouser. Time doesn’t fix what is broken, intent, courage, and actions fix things. If the pen is truly mightier than the sword, do not come into my community seeking to squelch it  with hate and greed and expect me to say nothing because the world is my community, humanity is my business and you have just made a very big mistake.’

Author’s Note:
Yes, I am a Harry Potter fan. Yes, I am a Bernie supporter. No,I do not think Donald Trump should be allowed to be the POTUS and oil companies should stay the hell off tribal lands. I apologize for nothing.

Posted in Uncategorized

Day 342: Life with Disability, Between the Pedestal and Reality

Discover Challenge: Mind the Gap

Living with a disability is no one’s idea of a cakewalk, least of all the disabled person. People who meet me on the street probably characterize me as happy and well-adjusted in spite of my difficulties. They see that because it is the face I work hard at projecting. They don’t see the antidepressants I’m prescribed, they don’t know that because I can’t drive it took me more than two weeks of bartering, planning ,and rescheduling to take this trip at all, even though it’s just to Walmart or the local mall, they didn’t see the frustration of having plans moved back for the third time in as many weeks. All they have seen, all they will ever see, is a polite, engaging woman in a wheelchair accompanied by a golden retriever and Australian Shepherd, willing to answer the same half-dozen questions she was just asked not five minutes ago by the people ahead of her and the check out line.

 

Sometimes keeping that up is the hardest thing I do in a day. So why do it? For me at least, the answer is simple. I keep the façade up because most people can’t handle the truth, it would either frighten or depress them or both I am not some celestial being without fault come down to cast some angelic light on those around me. Both my parents were military and my mother once lived in a Navy town, both things are quite evident in the level of creativity with which I can swear.

 

I have no memory of the universe ever asking how I felt about my life being seen by others as an object lesson. I accepted a long time ago that even though I don’t remember getting a vote, that was indeed how a lot of the outside world would be my life. As a kid who spent a lot of time in and out of hospitals, I went out of my way to make friends with nurses, doctors, and orderlies.I pride myself on the fact that I have never let the amount of pain I’m in dictate how I interact with hospital staff. I am no better or worse than the next person who makes for a difficult patient but I have the ability to remember that these people in the hospital did not willfully cause me pain for the purpose of watching me suffer, they are truly only trying to help. Not every person they take care during the day can see past their immediate pain and so I hope I have made their day a tiny bit easier.

 

Many people’s knee-jerk reaction to hearing the word disability is sadness.Statistically speaking, most people will have to deal with varying degrees of disability simply because everyone gets older. Recently my sister has started referring to disability as a lifestyle and initially I didn’t agree with it because I tend to use the word lifestyle to refer to things over which a person has a level of control and I have about as much control over being disabled as I do about the fact that I was born with brown eyes. I do have some level of control over how people perceive my disability though so perhaps lifestyle fits better than I initially thought. I do not want people to equate disability with sadness and I realize that for many people I know I may be their only reference to what cerebral palsy looks like. In fact, in my tiny town, I would not be surprised if I was the only reference to disability in general.I am naturally an introvert but will smile and talk to a complete stranger about my disability for as long as they care to have the conversation. I may have answered the exact same question 15 minutes ago but I will do it all over again. To a nondisabled person, disability is often scary and daunting, alien. If I can humanize it by answering the same questions 1000 times in a week or in a month maybe when the person in the wheelchair moved in next door they will ring the bell with a casserole in hand. If a person they work with is Deaf or hard of hearing they now make a conscious effort to speak more clearly and slowly so that person can read lips easier, maybe they even took sign language classes. If even one of those things happens to one person because of conversations I’ve had in the mall or in the grocery store then it’s all worth it I am not here to be an inspiration, what I here to do  is in some small way, leave the world in better condition than when I found itblue rose 2

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Politics, service dog

Day 341:Service dog bias

My golden retriever turns six in April. He is still extremely willing to go to work but a knee injury that he got when we lived in Colorado making it difficult for him to go up and down stairs at times. So we have decided that it is time to start training another dog so that he can retire in a few years.He is still going to go everywhere with me but so is the puppy one she is housebroken. Medical school has a saying “see one, do one, teach one,” and that’s the theory I’m using. She is not a golden retriever, I considered another one but I didn’t want to fall into the trap of expecting her to behave exactly like Gideon, that’s not fair to either of them. She will be my first Australian Shepherd. I know they are high-energy but I believe I’m up to the challenge. At this point, I would like to address something that frustrates me immensely. Service/assistance dogs are often separated into two categories owner trained and program trained.  Gideon and Nekoda, (named for the main female character in Sherrilyn Kenyon’s Chronicles of Nick book series), fall into the owner trained category. Many owner trainers do so because waiting lists for program trained dogs can be several years long and many require that the service animal is the only dog in the house. Some people are willing to make that choice and rehome a pet dog to comply with the program stipulations, I am in no way trash talking the person who chooses to do so, or the program for having those rules. The fact is that most people do not  expect the same level of behavior from  their pet dogs as is required in a service animal.

Training my service animal has been my personal crucible.I’m not the same person  I was five years ago. I am no one’s doormat or rug. Training my dogs has given more self-confidence than almost any other experience in my adult life. After the recent election, I need every bit of that confidence. In  the face of a very real and very worrisome  Trump presidency, we as service animal handlers need to shelve our bias and preconceived  notions of each other. Someone once told me that our first and best advocates  are always ourselves. We can’t be the advocates we will need to be for the next four years if we are fighting among ourselves.

mom-gideon-nekoda
Mom, Gideon, and Nekoda
Posted in Uncategorized

Day 340: When Happy Thoughts Just Won’t Cover It, My Ongoing Mental Journey

Image result for rain cloudsMy mother can tell you that I wrestled with anxiety and depression for years without the benefit of medicinal aid. She will tell you it sucked. How she and my sister never left sharp knives  or even forks in places where I could easily get them. At least once a week there was a solving meltdown and at least one month there was an argument about going to a mental professional. It’s not that I don’t believe mental health is a real and necessary aspect of well-being, I didn’t think less of people who have prescriptions to help manage their mental   balance. I just didn’t want to be the one taking the pills. It felt like admitting that I was, even more, an outcast. Mental illness on top of physical disability, who wants that label, especially in high school? I continued on in adamant denial until I was in college. I was having trouble getting my caregivers to show up on time so I can get to class. Many thought  I was just being a slacker and refused to believe me no matter what I said. This, of course, affected my grades and self-esteem. On top of this my very best friend, the one who got me through high school math and told me what I needed to know to successfully navigate having a disability in college, got Lyme disease, missed the window where antibiotics would kill it and was told that because of other health conditions as well as the Lyme disease he could expect a severely shortened lifespan. He would eventually die before I turned 30. Finding out my friend was sick was the straw that broke the camels back. I went to a doctor and said I can’t do this anymore I need help.

 

It’s  years later and I won’t tell you the medicine fixes everything all the time but it’s better. Some days still suck and there is not a single day where I don’t wish I didn’t need the extra help, but at the end of the day ,I like the post medicine version of me much better.To anybody struggling to come to terms with needing a prescription to help you be the best version of yourself, you are not alone and you are not weak no matter what someone else may say, especially if that someone else is in your own head. You deserve to be the best version of yourself you can be.

Posted in Uncategorized

Day 339:Gender and Race are Not Excuses for Violence

Image result for stop sign free image

I believe  that people’s lives intersect for a reason. Some stay for tiny blips of time that feel too short, others may stay far past the point we think they should. Positively or negatively we are influenced by others. Somewhere I heard a phrase, “leave this world better than it was when you found it,” and it’s something  I try to live.  The  older I get the more people I seem to know who don’t fit the gender binary. I have seen people ridiculed for not fitting into the box society has built around them without so much as a “by your leave”. News flash folks, gender is a social construct. Humans built what it means to be male and female. Biology determines DNA humans create gender. The concept of gender is malleable.Women should be able to do anything men can do and men shouldn’t be given  crap for taking on roles  traditionally thought of as feminine.

Also can we please stop the violence?There is way too much violence today. The “us versus them” mentality is rampant the racial divides were implemented by elitist bigots who use them to say to poor white people “well at least you’re not black or insert minority group”here, in an effort to make them ignore just how badly they themselves were being treated. It worked. Violence against the LGBTQ community (of which I am a part) is happening every day. I go to sleep with the nagging worry in my head that I will wake up to find that one of my friends has been tied to a barbed wire fence and beaten overnight while I slept. The violence against transgendered people is getting scarier every day. To the people who support “bathroom bills” because they are afraid that someone might attack a family member or a loved one I say to you that it is possible for a transgendered person to be violent or a criminal, being transgender does not make them violent or criminal. Most want to their lives, pay taxes and love their families just like everybody else. Look at it this way would you be happy if someone thought you were violent just because of the color of your hair or the car you drive? It is absolutely and totally ridiculous but these are the realities of life for a great many trans people. The area I grew up in isn’t known to be particularly friendly to those who lead nontraditional lives. I know this because someone in my family once went on a tear about how members of the LGBTQ community were going to burn in hell. They had no that I identify as bisexual. When I was in high school there was a young man who was always very conscientious about treating me like a human being which is not something I can say for everybody I went to school with. Several years later I have heard through the grapevine that he has since transitioned to being a woman. Even though she and I have not spoken since high school I worry about her every day. It seems the older I get the more my friends come from marginalized minorities. I know a trans person works as a paramedic on the third shift, we haven’t each other all that long but anybody who has known me for an extended period of time will tell you that when I decide to get attached to people I get attached with superglue, so every time he leaves for work a very small part of me worries a little extra.

Children are the future but children don’t know the things they need to until an adult teaches them. Every hateful word, ugly action, a moment of indifference teaches  our kids whether or not they’re done intentionally. There are massive social injustices in this world and one person can’t change them all but the tiniest rock shifting can start an avalanche of change. So I challenge you to be mindful of your actions with yourselves and others and maybe, just maybe, one day you’ll see that one tiny action of yours caused a cascade that changes everything for the better.

Posted in Uncategorized

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

Image result for blackboard

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.