Too abled

Well, the day has come again. People in several disability communities I’m part of on a social media site have started discussing what does disabled mean. It’s not the first time. I wrote about this here: The Disability Card and here: Orphan Zebra.

Today is different. Maybe it’s because I’ve had several heart to hearts with my care team recently. Those complicated discussions where the doctors try to convince me that when I push myself, I only make myself sicker while I argue that pushing myself is what is expected as I’m not disabled. Then the doc runs through all the things they are providing support for me. I guess the day is finally here.

People look at me and don’t see disabled. I work very hard to be non-disabled, so on the days people see me “normal” they have no idea what it took to get there. Of course, I only leave the house 4-5 days a week because the rest of the time I’m trying to get “better” enough to look normal. It’s a daily decision on whether I’ll make it out of the house.

I think the hardest part is I’m still of working age and have the education to be employed. I should be working, or so I feel. I’m just not sure there are any employers who understand why I have so many doctor appointments. Or why I’m dragging at work. Or how can I be sick….again. I’ve worked for employers who can’t see past disabilities whether they be temporary like the flu or permanent like mine. There is discrimination, both subtle and outright. The last few jobs I interviewed for, I was asked about my disability in a very roundabout fashion. Oh, they are careful not to ask outright and I do my best to answer truthfully without shooting myself in the foot. But, I can’t help but wonder if I’m not getting the job after the interviews because of disability. What if I’m equally qualified as a non-disabled person? Who would you choose?

So today at an appointment, my insulin pump fell out of my pocket. I now have quieter infusion pumps in the backpack, but you can still see the IV line running under my shirt. My service dog alerted during the appointment. I lost my train of thought because I was dealing with the alert. Fortunately, this was not an interview. It’s really hard to overlook these things.

So, to the guy who told me I was using a handicapped spot I didn’t need; the person who exclaims “you don’t look disabled!” and the surprised looks I get when my service dog comes out from under the table….leave me alone. You have just walked in on chapter 47 of my life. You don’t know how I got here or what my future holds.

To those online personalities who try to define disability, just stop. Disability is individual. In some cases, one aspect of a life is affected. In others, it is multiple aspects. It’s not a contest. It’s not a game. It’s life and all I want is to live it the best way I can.

Job Interview

Dear Hiring Committee:

I made it through the screening process. You only know what I put on paper so far. Now we meet for the first time. You seem like an affable group. Smiles and handshakes all around. Then, “What’s your dog’s name?” A harmless question, really. But you noticed I use a service dog. You seem okay with it as she settles at my feet ignoring everyone.

The interview goes well. We have a sheet of prepared questions, ten in all including the ultimate “Do you have any questions for us?” I answer them easily, gauging your interest by the notes you take, or don’t take. I see you watching me and hope it’s because you’re hanging off my every word and not wondering what’s so wrong with me that I have a service dog.

Oops. I “forgot” to mention I’m Autistic. I can pass off as NT pretty well. I’ve been doing it most of my life. You don’t seem to pick up on any of my stims (yes, I rub the skin between thumb and finger when I’m nervous) or the bit of rigidity that sometimes shines through in my answers. I choose not to disclose because I’m afraid it will bias you. I’m afraid you will only see my Autism and not all the experience and qualifications I bring to the table. I’m afraid you will judge me not worthy to work because you are not familiar with people like me. Whew, made it through the interview!

Oh wait. I “forgot” to attach myself to the bag of IV fluids I run all day using a pump. It’s a bit obvious, you see. It makes me look fragile. The pump’s clicking noise is like an adding machine. Ka-clunk. Ka-clunk. Ka-clunk. Every 8 seconds. In a quiet room, you can hear the pump doing it’s job. I don’t want you to be distracted from ME. I’m the focus here. Can I do the job? YES, I can. Do you need to worry about my pump? No. I can handle it. The fluids make it possible for me to ask for this job. You see, they keep me out of the hospital.

It’s kind of funny that the job is with Disability Services and I’m afraid to disclose my disabilities because they might disqualify me. That’s how strongly I sense the stigma of being disabled. Sure, this will all come out if you hire me. I’ll deal with that when it happens. At least I know you hired me for ME and not out of some misguided sense of filling an EEO place. Yep, we’ll have to work around appointments, perhaps more so than an “average” employee but not so much that I can’t do the job.

There you have it. You didn’t ask and I didn’t tell. There’s a certain beauty to this dance. We both have to take risks and hope the payout is worth it. I’m sure you didn’t disclose everything about the job. I quite sure you didn’t tell me about the personalities I will have to “fit in” with in this position. So, I don’t feel bad about leaving out a few things that really don’t impact how well I can do the job. That’s what this whole process is about, right? Finding the most qualified candidate to do the job.

Sincerely,

Oysters and Life

 

Bully Me 2

Thirteen in the thick of a cornfield
I learned to fight, keep roads tied, and not chill
Never did change, stayed strange, hopped a train
My first chance I got out of Smallville
Life has it’s way of movin’ you on, don’t it?~ Kenny Chesney, Don’t It

My daughter asked me a question a few weeks ago. How did I deal with the bullies in school? Bullying has become a front stage issue. When I was much younger, it was tolerated as long as no blood was shed. Boys will be boys and all even though girls are sometimes much wore bullies.

Truth is, I did learn to fight. Most of the time I used words. Trust me when I tell you that using words is challenging, especially when you have an extensive vocabulary. I fluently spoke three languages…the Queen’s English, American and Sarcasm. Unfortunately, Sarcasm only works if you use words the recipient understands. Otherwise it just goes right past them.

I threw a fair few punches at school. By the time I was in Junior High, the pack of bullies drew immense pleasure from teasing me. My locker was broken into. I was tripped in the classroom. I was shoved to the ground in PE. So, I learned. I learned how to fight back. I shouldn’t have needed to, but the teacher’s didn’t stop the physical threats. So, I got suspended. Before school, in school, after school. I was a regular on the circuit. By eighth grade, we were back to just words.

By high school, I had learned to just avoid the bullies. Head low, mouth shut. Move along and stay invisible. By my junior year, I had checked out. I started attended college and working. Not much time was spent at the actual high school. My senior year I had 3 classes, including two teacher assistant slots.

To answer the question…I dealt with bullies by becoming a bully. Not exactly a proud moment when you realize that. Certainly not the advice I would give my child or anyone else. We are much more aware of bullying and it’s effects than we were thirty years ago.

I did pretty much what the lyrics above talk about. I didn’t grow up in Smallville, but I left when I was 22. I remember it felt good to leave all that behind and start over. And over. And over. In some ways, my nomadic lifestyle was a blessing in that I could look forward to a move and reinventing myself. By the time we settled, I had a much better grasp on things.

Yes, it took me until my early 30s to realize I could be me. So my advice to my kids? Head up, feet forward and keep moving. Soon, the bullies will lose interest. You will learn to focus on the good things around you and the bullies will fade into the background. Does this always work? No. But about 75% of the time you are able to keep moving.

That’s what counts…being able to move forward. Each day will bring fresh challenges. Head up, feet forward and you will meet those challenges. Life is messy. You don’t need to clean up everyone else’s mess. Focus on growing into the best version of you. That’s what I would say today.

Inspiration

Today I met an amazing woman. She’s a foster mom with two of her own kids at home. Yesterday she received a call from social services asking her if should could take a sibling group of 4. With less than an hour’s notice, the children were at her door. As they were being dropped off, the social worked said…by the way the 7-year-old is Autistic.

It turns out that the woman works with a friend of mine. My friend gave her my number and urged her to call me for ways to work with the 7-year-old. The foster mom has no experience with anyone Autistic. Yes, she did call me. We texted over the next five hours as she observed the children. We talked about giving instructions and requesting compliance.

This morning I went to her house to observe the children before we went to the elementary school they will be attending. I had already explained to “mom” the possibilities and what the best placement might look like. As we sat in the conference room with the school staff, mom tried to keep up. The school staff kept speaking “school-ese” and didn’t even notice mom had no idea what they were talking about.

So, I jumped in. As a special education teacher, I was able to help the staff understand some of the unique needs I had already observed. Mom was able to get questions answered in terms she understood. The 7-year-old won’t be able to start school until Monday, mainly because of the many pieces must be in place for him to be safe.

I am really glad this mom reached out. She’s doing something most of us wouldn’t dream of doing….taking in children who have nowhere else to go. She’s going the extra mile to be an anchor for these kids whose lives were turned upside down. And she’s willing to learn more about Autism instead of refusing to take the kids. That is an amazing person.

 

Explain

How can I try to explain, when I do he turns away again.
It’s always been the same, same old story.
From the moment I could talk I was ordered to listen.
Now there’s a way and I know that I have to go away.
I know I have to go.~ Cat Stevens

In the song, the artist is having a conversation between a father and son. Here, I want you to think about the words in a different context. It’s no secret I have multiple medical issues. I recently had a “minor” procedure that, now entering week 3, has wreaked havoc with my life.  Combined with some medication changes, I literally have no life right now.

So what do those words mean? I’m tired of explaining myself. It’s hard enough when I feel well. When I don’t, well, it sucks to have to keep repeating myself. Over and over to different doctors because for some reason, they can’t read notes. They refuse to listen to me. They refuse to listen to each other. It’s like shouting to the vast oceans.

Part of this is my Autism. I just can’t communicate my needs correctly all the time. I assume people know what I need/want and they don’t. They no more know how to read minds than I do. I think they hear me, but they don’t really get what I’m saying. Honestly, I speak fluent English as do  most of my medical providers. Somehow, it seems to come out gibberish.

The worst part is that most doctors don’t seem to hear me. I’m told to listen and not question. Right now, I have refused treatment for one disease because of my doctors. Honestly, it’s frustrating all involved parties. But, I felt I had no choice. There was a lot of demand placed on me with no expectation that they listen. My words fell on deaf ears. So, I refuse. Childish? Absolutely. Effective? Quite possibly since outcomes drive evaluations.

I’ve also been denied treatment in these last few weeks. It seems that my doctors, even the ones who just met me in the ER, know more than I do. I went in for pain…it seems they somehow missed a 3mm kidney stone and are now calling it a fragment. Let’s just say that it’s significant and painful. Did I receive treatment? Not really. My blood sugar decided to go low most likely from the stress. So, they focused on that. They didn’t even check for stones and consequently figured I was just seeking drugs.

You can go in the archives to find more thoughts about seeking. In this case, I just shut down. Doctor’s seemed to be yelling at me. Demanding things. Angry voices. And I, adult and all, just shut down. I have to say, doctors have no idea how to deal with Autism. Yelling doesn’t help. It really never helps. But it’s what they do. So, we go nowhere. I don’t receive treatment, they don’t get answers.

So there is no win/win. It’s all lose/lose. The doctors can’t treat me. I shut down and can’t answer questions. One day, my wish is for compassionate physicians who aren’t “in your face” or “detached” from what they do. .Until then, I guess I’ll just be a petulant child.

 

 

21

Sing, Sing, Sing by Benny Goodman

Middle turns 21 today. He’s into music. I found the perfect song for him….

Twenty-one seems, I don’t know, young. Exuberant. Jubilant. Excited. Snappy. And jazzy.

All the rites of passage of youth are supposed to culminate on this day. I don’t feel that way because there is so much more to life than being able to buy alcohol legally. But, Middle likes to hang out with friends and he’s a tad younger than many Graduate students, so now he can actually go listen to bands at local clubs. I’m sure that is one thing he will like.

Yes, you read that right. I’m really very proud of Middle. He’s moving through college at an advanced pace, set entirely by him. I was told 19 years ago that college wasn’t in Middle’s future.

I hope you’ve read enough of this blog to know that “can’t” “won’t” and “never” aren’t words I use. Middle went further than those pediatricians said he would. He is exceeding the expectations of many along the way who whispered “just give up.” Middle took that as a challenge…genetics and all I guess.

Middle doesn’t like me to talk much about him. I’ll just say that I’m mighty happy he didn’t listen to those who would have denied him opportunity. I’m tickled that he’s making a life for himself. We still talk, but he’s the one steering the ship now.

So, Happy Birthday to one of the most amazing young men I know.

 

 

It’s quiet

Youngest headed off to college this week. The house is quiet. The dogs are not sure what’s going on. It’s eerie.

I can watch whatever I want on TV- not that I want to watch TV right now. Dinner? Easy to please everyone now. I’m beginning to see the usefulness of frozen food.

I hope she stays in touch. We have texts and social media now, so she doesn’t have to admit she’s calling home. I just sent her a box of things she forgot to pack. Important things like the television remote.

My wish is that she finds her calling along this path she’s chosen. We raised her the best we could and now it’s time for her to fly. Well, maybe just stray a bit from the nest  right now. Give me a few weeks….

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.

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.

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.