Closed mind

A few years ago, almost 5 to be exact, I embarked a journey. I decided to utilize a service dog to help mitigate some of the problems my disabilities cause. It was not a decision I made lightly. Up until then, I had owned pet dogs. You know, the kind that come when they feel like it and maybe sit for 2 seconds. I was about to train a dog for some very specialized work, so I went looking for answers.

At first, I did what we all do. I joined every social media group relating to service dogs. I bookmarked page after page of organizations and blogs that related to service dogs. There was lots of information, At the time, I didn’t know anything about training so it all seemed valid.

And then I was schooled. People started criticizing the breed of dog I was training, the type of leash I used, the way I walked, the words I used to train and pretty much everything else I did. At first, it was confusing. Then it became downright hurtful. I learned that there are people in the service dog community that only want to tear down in the name of helping.

I also learned there are poseurs, liars, cheats and downright hostile individuals in the service dog world. I shouldn’t be surprised because, well, they’re people and you’ll find that all types across humanity. I became disillusioned and decided to leave all that behind. Unfortunately, it still occasionally catches up with me.

Poseurs, or people who think they are the best trainer EVER, still catch me off guard. They look good. They talk a good talk. And then, comes the walk. The walk reveals that they really don’t know what they are doing. The walk reveals that they lack the true insight into working with dogs to get the best results. The walk reveals that their dog is nothing more than a highly trained pet.

They’re not the fakers you hear about in the news. These people do have disabilities that could be mitigated by a service dog, which is what the law requires if you’re going to work a dog. Yet, their dogs just lack….something. It makes me uncomfortable to be around a dog that doesn’t “work.” Yes, I know “work” looks different across the board. These people just seem to have a dog.

My first instinct is to try to figure out why I feel this way. Then I want to help. Which is when I get smacked upside the head. You would think I learned my lesson by now. It’s like raising a child. No one really wants your thoughts because they already KNOW everything and feel their way is the best way. I’m left wondering why people even ask for comments if all they are going to do is get pissed off and lash out.

So, here I am. Five years of service dog training and handling experience that apparently means nothing to anyone but me. Forty-five years of living with dogs and learning about their behaviors, which also means nothing to anyone but me. A sense of wonder at why people refuse to accept that there may be other ways to do things. To consider that there are vast amounts of knowledge at their fingertips that could make their journey easier.

I guess it’s all in your attitude. Are you willing to accept that someone else may have ideas that could help you? Or are you firmly entrenched in your views and unwilling to see what others see? A closed mind is the biggest disability out there.

PS: While this is about service dogs, you can plug in just about any noun and it will still apply.

Letting Go

If you can read this, you probably have some of what we collectively call baggage. You know, the things in our past that shape our current thoughts and behaviors. Everything from how you were raised to what you ate for lunch could count as baggage depending upon your perspective. Many people feel the word only applies to “negative” things that they remember. I feel it applies to everything we’ve experienced in our lives.

Sure, some of the baggage is olive drab in it’s packaging…things that just are. Like eating a tuna sandwich for lunch. Other baggage is sparkly neon purple for all the things we consider wonderful in our lives. And still more is basic black, only trotted out on special occasions.

Let’s talk about those occasions. You may have heard the phrase “it’s ok to “go there,” just don’t unpack.” That’s what basic black is all about. It is the really high and really low points of our lives. The things we are most proud of, and sometimes most ashamed of, that we keep sacred until a trusted person or two gets us talking about our memories. We can put on our basic black in a formal fashion, tux or long dress. We can choose to wear all black clothing to suit our mood. The color does tend to create a certain mindset of those around us when  we wear casual black  colored clothing.

Enough allegory. We’ve all got things we’re proud of and things we’re ashamed about. Just read social media to find out what people are proud of in their lives. It’s chock full of goofy pictures, witty sayings and happy status updates. Sometimes, someone posts a “downer.” I’m never sure how to respond to those, mainly because I have a hard time determining depth of feeling. There are posts about things I can’t relate to as I have never experienced that particular situation. All I have to offer to the poster is a cyberhug.

Then there are the people who post about things I am very familiar with. I’ve got four decades of baggage to comb through to find the situation that fits. That’s a lot of situations. And…my track record for surviving is still 100%! Yet, when I offer information, be it condolences, or advice, I get smacked. Hard. At least 95% of the time.

Why are people so unwilling to listen to others? Seriously, I can think of several of my social media friends right now that if I say anything about their status, they will lash out at me. Even if I offer praise, I get smacked. I’m left with two options: let it roll or move them to the unfriend zone.

What bothers me the most is when I find my relevant piece of information, and I don’t share anymore unless I’m sure it’s relevant, I am ignored, unfriended or otherwise dismissed. Did I mention the four decades of experience I possess? Yeah, I actually do have valid insight to many situations. They’re not exact, because we view everything through our own lens. But, they are pretty damn close.

I want to be supportive. I really, really do. But, I can’t. If you are not willing to let go of your experience as the only valid experience, you can never gain insight from others. Listening to other people can save you grief, time, money and many other tangible/intangible things. When you choose to ignore it, or you smack someone for trying to help you, eventually people stop helping you.

Which is where I’m at right now. I tried to help someone. I tried to be supportive and demonstrate I believed in them. Instead, I’m being kicked, repeatedly, up side the head. I think I know why (did I mention four decades of experience).The individual has an inflated sense of self. They have been hurt many times and don’t want to be hurt again. They perceive they are knowledgeable. They don’t want to be publicly embarrassed (who does?). A feeling of shame pervades their life and advice is viewed as an attack.

Let. It. Go. The only thing keeping you from moving forward is you. Every person I know has had feelings of shame and inadequacy. Guess what? They have a 100% survival rate so far too. The only thing that is shaming is how you continue to treat other people poorly. It is a reflection of your inability to let go of the past. If you want lashing out to be your legacy, carry on.

Or, choose to allow a little bit of other people into your life. Choose to learn from others. Choose to rejoin the community. Choose to listen, watch and reflect on what people are offering you. You don’t have to take the advice, but if you consider the way it was offered, you might just discover your true self again. Because I don’t want to believe that anger and emotional reactions are really what you want to feel.

Sync

I was asked a question a few days ago. Keep in mind this question comes amid a health issue and quitting my job. The question seems simple on the surface. What do you want to do?

To me, it seems people are defined by what they do…their position in life determined by their job. I feel that we value our ability to “be productive” and bring home a paycheck. There is status in being employed and non-status if you don’t work. People seem to still count stay at home parent as a job, but what happens when your house is full of legal adults instead of minors?

There is no doubt my job as a parent is incomplete even though my kids are technically adults. But I can’t seem to be a stay at home parent.  I don’t fit with the parents who have school age children. I’m supposed to be DOING something now I’m an empty nester.

The person who asked me the question followed up by asking why I felt I couldn’t just be. Well, it feels weird. It seems all the people I know are working now their kids are grown. Whether it’s out of financial necessity or the pull of societal norms, people my age and in my position are working.

And I’m not. I want to work. I even applied for a few jobs this week. But, it was only half-hearted. I have between 2 and 5 medical appointments every week. I need an employer who understands disability and doesn’t penalize for needing time off. Yeah, there are so many of those now <sarcasm>. Then there is the fact that the drama that occurs in the workplace tends to cause stress which leads to medical crises for me. Even though I can work, am able to work and am highly qualified in my field, I can’t work. This sucks.

A just posted a link to a NY Times article on my personal social media page. The article talks about how the next generation is stressed by their parents “demands of success.” News flash, this article applies to all of us. Just substitute “life” for “campus” and it will make more sense. Read it here:  Suicide on Campus

So, what do I want to do. I want to get healthy again. I’m entering week three of the latest medical issue and it’s getting old. I want to work, so I’ll probably go back to my volunteer job at some point. I really don’t know how to just be. I guess I should start thinking about that.

The first step is probably giving up the feelings of guilt that go with not having a paid job. I know I’m not the first person to have those feelings. I’m sure I won’t be the last. You know what would be great?

Your challenge: Reach out to someone who may be trying to adjust to a “new normal.” Let go of your notions of “value” and help someone just “be.” It’s something we will all face at some point in time.

Why am I fighting so hard

It’s been a rough couple of days. The big event is that I quit my job. Well, quit is an odd word to use in this case. Let me explain.

Last year, I decided to go back to work. I located what should have been a great job for me…special education teacher at an alternative middle school. Lots of behavior to sort out. I know it’s odd, but after so many years to trying to understand why people did things certain ways, I like untangling those balls of yarn and helping kids see there are other ways to communicate. There were academic challenges of all varieties. Really, lots of diversity which is what keeps my mind in problem solving mode. And I very much like to be in problem solving mode. I accepted the contract.

Like all teaching jobs, the pay was not great. In this case, the pay was almost exactly 1/2 what I should have been earning under the pay scale. I accepted it because I would have the freedom to still take care of my medical needs without having to beg for time off. The contract worked really well for both parties last year. And then, fall arrived.

It seems everyone thought I had the same contract when I left in May. I found out the week before school started that somehow, my paperwork was never processed. Here I was, district ID, building keys, district computer in hand and not a district employee. The principal assured me he was working on it and, in good faith, I showed up for teacher workdays. And the first week of students. Not a district employee…not being paid at all. Left to teach and supervise students without oversight. Two business weeks after the discovery, still not paid what is owed.

In less than a week, I went from being told I would have my own classes and be responsible for my caseload to being an accessory. One teacher kept going to the principal and demanding things like taking a special education student and putting the student into an inappropriate setting because “I’ve been teaching him for 2 years and it’s not fair I don’t get to see him this year.”

The full-time special education teacher never let go of the case load. A martyr complex kept her running. She was always “so busy” and yet refused assistance. She had to be involved in every student. She convinced the administration the she alone was responsible. The teachers would tell me “I’ll just ask Roberta” whenever I made a decision they didn’t like. The last straw…I was sitting in the principal’s office laying out the case for keeping the aforementioned student in the appropriate class. The principal says it’s a conversation he will have to have with Roberta. That’s when I stopped fighting.

You see, I’d been disrespected enough. There is only so much disrespect a person can take before they decide enough. I probably took more than I should have, but I felt obligated to keep the students on track. It turns out, my thoughts weren’t valid or requested. When I left last week, I really felt that they didn’t want me there. I was an inconvenience to be dealt with, not a peer or colleague.

In case you are wondering, this is why I can advocate for students and take districts to task. Here are so-called professionals who only care about their feelings. The irony of this is one of the teachers wrote a passionate op-ed a few weeks ago about caring for student needs. That would be the same one who wanted to take a student out of an appropriate placement because she wanted him in her class. She didn’t want to take the other 17 special education students, just one. That’s not demonstrating caring. That’s blatant discrimination. It’s called cherry picking. I’d bet there would be many parents at that school who would love to know how decisions are being made.

So, I will speak out. I will support parents who question their child’s education. I will answer questions truthfully. We trust that teachers will be “helpers” in our student’s lives. Yet, here is another example of what education really looks like. About how our most vulnerable students are being passed around like a candy dish, each teacher picking their favorite. It’s not okay.

Your challenge is to ask questions. Don’t accept “uh huh” as an answer. Go to the school and see for yourself. You have a right to know what’s going on in your student’s education. And you have a responsibility to make sure your student is receiving the appropriate education that is due.

 

To Every Season

A time to build up, a time to break down
A time to dance, a time to mourn
A time to cast away stones
A time to gather stones together~ Turn, Turn, Turn, The Byrds

I follow a number of bloggers, many writing about Autism. Several have young children and over the last 5-6 years I’ve read their posts about their kiddos growing up and doing things they never expected. I’ve lost count of the number of times I have wanted to reach into my computer, pat those parents on the shoulder and tell them it will all work out.

I know it’s human nature to not take advice. I’m human, really. I don’t always listen. I have learned that other people have been through what I’m now dealing with in my life. I read their social media. I’d bet most of them don’t even know I’m stalking them; snatching up every crumb of information I can as I struggle with new problems.

I wish I could tell these parents of Autistic kids that it will all work out. Do not confuse that with “it will all be okay” because it won’t. Okay is a term people use like a consolation prize. Every one of us has to grow and change at our own pace to become the best people we can. Things may not always turn out the way we want, but each experience provides opportunities to see the world differently. To accept that different is not less. To embrace change all around us as a good thing instead of a moment of sheer panic.

I wish someone would tell me it will all work out. I wish I had a shoulder to turn to when the scary things run through my mind. So I understand not saying things out loud as a protective measure. But at the same time, I wish I could throw a pity party that other people would come to and pat me on the shoulder.

Many paths to our destinations. None are inherently wrong. Some are tougher than others. Sometimes we need a push to get moving. In the end, we will all end up just where we are meant to be.

Why I’m angry

I’ve read a few blog posts recently as well as some social media that indicates a vast majority of people still struggle with disability acceptance. These range from posts about the 25th anniversary of the signing of the Americans with Disabilities Act to one post about how awesome a certain Autism organization presents itself. Many of these posts make me angry.

You need to understand I’m not a “person with a disability.” You cannot separate the things that are different about me from my core characteristics. I am the sum of everything that has happened to me. All of my being is wrapped up in a tapestry that you can’t just pull a thread out of and it will still be a tapestry. Thus, I get angry at many posts I consider ignorant.

Let’s start with “disability” and what it means to me. Yep, I’m physically disabled. Got the doctor’s notes and everything. Does that mean I should be tossed aside as useless? I think not. I work a part-time job, volunteer and have an adult family to tend. I pay taxes. I give back to my community. I don’t consider those “worthless.”

I’m considered mentally disabled as well. As an Autistic, I face challenges others do not. However, I hold to the label of Asperger’s and not the newer “ASD” label. My main issues are with social cues, not intellectual difficulties. I’m apparently sarcastic and dry witted. Traits not appreciated by many. I’m frustrated by those who insist Autism  needs a cure. WTH! The last time people wanted to “cure” my type of disorder, several million people were sent to their deaths in gas chambers.

Yes, I’m angry. Autism $peaks has marketed itself to the point where people think it’s a “good” organization, much like the Susan Komen organization. Both are very public faces of diseases. Both have been shunned publicly by the very people they claim to serve. A$ does not speak for Autistics. They promote eugenics, physical and verbal abuse in addition to painting a picture of despair. Bottom line, you “light it up blue” and you are saying Autistics don’t deserve to exist.

There are so many places you can learn about Autism. Support locally to make sure your time and treasure actually help people and not just generate hype. There is no doubt that Autistics need your help. We need your help accepting our differences. We need your help funding respite care for families. We need your help to ensure families, regardless of economic means, have access to therapies. We need you to understand that different does not mean less.

Can you help?

Deficits

DEFICIT

(1) :  deficiency in amount or quality <a deficit in rainfall>
(2) :  a lack or impairment in a functional capacity <cognitive deficits> <a hearing deficit>
 (3) :  disadvantage <scored two runs to overcome a 2–1 deficit>

 

The Autism diagnosis is based on deficit, or lack, of certain skill. The focus is immediately on what cannot be seen or done. I’ve written several time on “less than” as the way society sees people with disabilities. Is it no surprise that the perception becomes reality when even those diagnosing the disorder start from a place where “lacking” is the basis for diagnosis?

I’ll tell you that I have certain skills that are not as strong as they could be. I have a very strong sense of right and wrong, which leads to heated arguments on a regular basis. I do sense grey areas, but frequently disregard grey for black and white. I am perceived as socially adept, although the reality is I am fascinated by behavior and am constantly watching people so I know how to respond. I have high anxiety around “normal” parts of life because I don’t understand how something will work out. Basically, I’m a tangle of social issues, which just so happens to be the basis of my diagnosis.

I’m not a savant in any area. I am verbal and able to communicate, unless I’m confused. Then my words don’t make sense and frustrate everyone including me. I’m educated, having attended college and pursued advanced degrees. I’m a professional. I hold a job. Fortunately, my job doesn’t demand that I interact with adults so much. I’m just not cut out for the games and machinations that seem to plague many workplaces.

I am a daughter, wife, mother and sister. I’m a mentor, a teacher and a coach. I am an active member of my community. I don’t sit behind my computer and watch the world go by. Well, most of the time at least.

We all have deficiencies. Some just come with a label. Some are labels slapped on us by society. Some we accept ourselves. If you look closely at your life, you may just find some areas where you come up short.

Are you deficient? Probably so.