Cardboard Plastic Reality

Autism is a funny 'thing.'

I don't like that word . . . 'thing.' but in this case, it works. It works because as long as I have lived with Autism, as hard as I have tried to understand it, as much as I have tried to define it, for all my analyzing, researching, reading, learning and discovering . . . I still have no idea what Autism actually is. I don't believe that Autism is a disease. I cannot bring myself to commit to the idea that Autism is a disability, or a disorder, or anything else.

I'm certain I am not alone here in this world of not understanding. Twenty years of reading research papers, listening to podcasts, reading books and now, watching documentaries . . . and we are no closer as a world to understanding how Autism happens. The only piece of the puzzle that I know certainly and without question is that we are still afraid of it.

We are recycling the same arguments that had been presented, represented, tested and dismissed again. Maybe we missed something the first time. Autism is going to be our eternal cold case file - the mystery that we just cannot seem to crack. I believe this because every time we witness some remarkable breakthrough, we are astonished by how close we were to the answer and didn't see it. We were looking everywhere except directly where we stand.

Did you seen the Google Cardboard Plastic April Fool's Day advertisement? It was hilarious, tragic and likely no truer words were ever assigned to a marketing department. The concept is way too close to reality not to give pause. It's sad.

If you watch it you may wonder as I did, "This could be true on so many levels." I hope we haven't missed something so elemental on a far grander scale.

Yes, I understand that clinically, Autism is a disorder. But Autism isn't always a functional disorder. Sometimes, it seems to me as though, Autism is really a functional difference. Sometimes, we (the neuro-typical) are those with the largest deficit to understanding. This means that we are the ones with the disorder. We are the group who lack understanding and struggle to rationalize behavior. Have you ever thought how struggling with a disability feels to one who embodies that situation? I'm certain this there is frustration, but there is likely far more acceptance than we permit.

What if we did . . . permit differences.
What type of place would that be?

A girl can dream, can't she?

Thankful for our Disability

Thanksgiving is behind us and now we move, full speed ahead at what feels like a very reckless pace, toward the Christmas and New Year’s holidays. Time will effortlessly slip by and stress, some task (important or not so much) will be forgotten, meetings will be cancelled and time overbooked, technology will fail us at some point, a few truly great ideas will never make it to the planning process. We'll decorate and dress for the occasion in an effort to put forward the image that we would like others to perceive us as. All of this seems to happen every year. But let’s try to keep it in perspective. Let’s try to keep focused on what it is that keeps us coming back to the Thanksgiving table.

In the quiet moments of the holiday week, pictures rolled in of all the extended families and friends who were also celebrating the unique and individual greatness-es within their respective families. All so beautiful and so appreciated by those proud people close to them. Each fulfilling their place and being exactly who they are.

This year, I asked everyone around my Thanksgiving table what they were thankful for and received very similar answers. My family was thankful that I cooked. I was thankful for each of them. They do not understand how valuable they are to me. Even in those few minutes of communal time spent at the dinner table they are incredibly priceless to me.  As time continues to rush by, I’m certain that each new year will bring more reasons to stop . . . an be conscious of just how thankful I am – for all of them.

My family is far from perfect, but they are mine just the same. We are all flawed in our own way. We all came to my table with our different personalities, our daily frustrations, the temporarily suspended yet nagging demands of our work, our internal random thoughts, our unspoken reasons for wanting to stay or leave (football games that need to be watched, girlfriends that need to be called . . . ), the circumstances that distract us from those golden moments spent in the community of our family.

Yet, we are still extremely thankful – for all of it – for each of us – just as we are in those moments – each with our own unique abilities and dis-abilities.

The Merriam Webster Modern Dictionary defines ‘disability’ as:

dis·a·bil·i·ty

ˌdisəˈbilədē/

noun

1.    a physical or mental condition that limits a person's movements, senses, or activities.

This seems to fit just about everyone who was seated around my Thanksgiving table or our Thanksgiving bonfire in some way or another and also not a single one of us. We are all, none of us, perfect, unimpaired or without some condition that affects us in some way; visible, detectable or otherwise. Not everyone can be a squirrel. Some of us have to be queens, balloon carriers, champions, order keepers and cheerleaders. 

My family spent a wonderful (and sometimes stressful) three days together. At this stage, we are all adults by definition. At the same time, we are all independent, smart and strong-willed – and yet so different. We each have strengths, gifts, talents, flaws, and tasks that we are just not good at. My oldest son is great at keeping up with all our household electronics, but pure rubbish at cleaning anything. My husband is a pragmatic handyman, but not the greatest at multi-tasking. My youngest son is a great, practical problem-solver, whatever the issue, but he gets bogged down in the emotions around too many choices and options. My Mother is a creative force to be reckoned with, but her functional side is sporadic and gets lost easily. She’s starting to need more help with her daily activities. She needs someone around to keep her on track.

Me? I make it all look easy . . . taking care of everything, working and making certain that everyone has what they need when they need it. It seems second nature to me. I’ve been fulfilling this task in one family or another since I was a very young teenager. But the weight of my responsibility leaves little time to stop and think about what I need or what I’m thankful for. As my children grow and become their own families, I will inevitably have more time to enjoy the company of my husband. I will also have the new task of looking after an aging parent.

My life will continue to change. I will continue to be surrounded by my family of talented, unique and uniformly -abled and dis-abled members. They are perfectly normal and abnormal and I am incredibly thankful for all of them – each in his or her way for what they have brought to my table.

I am thankful for each of their personalities, each of their gifts. And I tend to luxuriate in each of their choices as to how to manage; to find opportunities to exploit their strengths and dismiss their imperfections as nothing more than they are – a unique and independent lack of expertise in some area. I choose this as opposed to choosing to label their dis-ability as a precise condition that causes additional and unspoken limitations placed or heaped on by outsiders who feel they understand or know someone fully based on a single adverb or noun. No. This is not where I will plant my flag.

Our abilities are so much more important than our inabilities. Our abilities allow us to be all we are in all our glory and to the best of our ‘ability.’ We cannot be afraid to be our best or allow others to fear their best selves because of a word or a societal label.

None of us, alone, are good at everything; know everything, are able to complete every task, or have the innate ability to achieve every single function we confront. Yet every one of us can be our best self if we are allowed and nurtured to do just that. Everyone is a mess of imperfections and inabilities. Why is it that we focus so heavily on them when additional labels are piled on that really only serve one purpose; to explain some facet to another who doesn’t know us yet. We all have dis-abilities galore. More dis-ability than ability when we really examine our entire selves. Disabilities are boring, fairly useless and don’t help any of us accomplish anything. But what if we embraced the differences in each of us? Giant rolling cupcakes might be a ton of fun! But they're definitely not normal.

Why would I ever concentrate on all the imperfections my family brings to my Thanksgiving table? There are so many among the lot of us. But it is the magnificent imperfections despite our individual shortcomings that collectively create our strengths, gifts and talents – now those are worth celebrating. Those are the pieces of each of us that enable real and true ability in all of us. Individually and collectively. Not only those of us with an extra label or two. That is what I am thankful for every day, but especially on Thanksgiving when the gifts are gathered, shining (and sometimes bickering as only a bunch of strong personalities in the same room can) in all their beautiful ability.

We all have problems .. . . so what. Tell someone something interesting about yourself instead. I promise it will be the beginning of something a little bit spectacular. And maybe there will be cupcakes. The tiny details of who each of us are is the best part. 

Job Hunting in Suburbia

Why is it almost everyone deeply dislikes 'The Job Hunt'?

Has anyone ever said, "Boy, I really love looking for a job! I wish I could do that every day!"?

Nope. It just doesn't happen. Do we all detest an opportunity to find something better - a stronger sense of value, more cash, new responsibilities or learning a new skill set or perspective on an already honed skill set? It really shouldn't be that daunting, but it is. It always is.

It is - because we cannot separate ourselves, our ego, from the business contract that is truly the foundation of the quest. Even for the most rational and mature, compartmentalizing to this degree is almost impossible. We are emotionally attached to the ideals we possess and the activities that we are good at. Engaging in them brings us joy. This is why we should work - to do what we love and makes us happy. Unfortunately, too many of us work because we have to at a task that falls short of defining us. Yet, we allow to.
What if what makes us happy is 'income.' Would we do anything to have that? I think the answer to that for some people is a resounding, "Yes." I wish that were the case for me. I've always been way too eager to tie my own self worth to the reactions of hiring managers. In fact, I enable them and assist them in it. The funny part is that it used to be easier - and harder - when I was younger.

Do you remember being 17 or 18 years old and looking for your first paying job? Something other than mowing yards, helping out at church or babysitting? We didn't have too many expectations. At least I didn't. All I wanted was a task that I could do and some money in return for completing that task. In return, I would do sufficient work and be reliable. -Not asking too much, right?

This summer my oldest son is home from college and looking for a job. I am a spectator to his persistence as well as his vulnerability - both in full view. He is young, dependable, capable and just wants someone to believe he can do a job that has worth.
For weeks he has been filling out applications, and calling managers and requesting interviews. While he is at school, he works for the Campus Police Department a few hours a week.He has a job he can do, has clear guidelines and earns him a small amount of spending money.

A summer job is different. He'll need to work a lot to save up enough money for his next school year. He won't have the security of a campus job. He will be at the mercy of hiring managers who don't know him and have literally thousands of applicants to choose from. It's not an easy task.

He is relentless, I'll give him that. He calls and talks to everyone he can in his effort to find work. He's found a few jobs and worked some, but the jobs haven't lasted for one reason or another. He gets frustrated when he makes a mistake and employers just - let him go abruptly without explaining the seemingly evident error.

Once, after being let go he came to me for some advice. While I tried to take the position of the employer, I'm sure I softened their reaction by a long shot. I had to. He's my son. I'm irrevocably biased, In any case, when I explained why the rules are the rules he said, "Why don't they just tell you that? Why don't they just talk to me like I'm a human with a brain?"
Those questions I couldn't answer for him.

My son is an intelligent young man. He has a heart, a conscience, an ego and feelings - all of which can be damaged buy hurtful, self-centered or poorly thought out words. Just because he has some difficulty expressing himself does not mean that he doesn't have feelings. It means, he has some difficulty expressing them. His is vulnerable just like everyone. In fact, probably more so, because he has established very few emotional mechanisms for protecting himself from the poor manners and lack of verbal impulse control so many seem to display.

I tried to explain that we've all been treated like we are "brainless wonders" at one point or another in our working lives - regardless of any apparent ability or disability. I tried to explain that this poor treatment actually has nothing to do with us and everything to do with whoever is doing the talking.

However, kinder, gentler words from a biased parent don't help much outside the walls of this home. They just don't offer much protection from the elements of 'outside employment.'

I am happy to report that my son did find work for the summer. He was a clerk at a local sporting goods store. He enjoyed his work - or at minimum enjoyed earning the money. He said very little about the people he worked alongside and even less about the work he was asked to complete - other than some derogatory comments about the insipid nature of retail and the shoppers who support it.

In the meantime, he turned 21 last month. It seems incredible to me that he can be so grown up.
He left for school a few weeks ago. He is back to his safe, campus job and his Sophomore year classes. He has chosen a major without my influence and seems happy to be back in the surroundings of his education.
Maybe he has a new-found appreciation and or respect for the task of finishing school and graduating. maybe he's realized that this may provide some buffer against a life of retail employment.

As with all the stages he has grown through. . . One can only hope.

The Profiles of 'Success'

My son is a teenager and in the second semester of his second year at college.
He's new to it, but he is also determined and will find his way to success on his own terms.

My husband is over fifty, an academic and on faculty at the same college.
Say no more.

The two of them are like oil and water most days; generationally, culturally, and philosophically.

I am the carafe that holds them in contact with one another.
It's a tough job.

The three of us have very different perspectives, yet we must co-mingle in some places. Inevitably, two of us form a pair and one of us plays the Outlier. Sometimes all three of us must try to arrive from our own perspectives at one common place. This is always the hardest task regardless the topic from the silly or mundane to those more important. Lately, and because my son is in college, we are attempting to determine what 'success' means to each of us - and find some common ground. We don't even agree on where that is most days. . .

What or how adamantly to apply that label to - well . . . anything is no small chore and demands diplomacy levels and patience on par with United Nations negotiations. Our lives in this space become too closely bonded and we crash wildly and headstrong into one another in sort of the way I would imagine asteroids plow into planets and the effects those impacts have on the other. Except there are three of us. More planets, more asteroids, more collisions, more damage, more change.

Are you beginning to get the magnitude of such a small definition?

Because we hold differing points of view, the routes from which we arrive at like points have vastly different paths. These days our individual definitions of  'success' are like three different maps of three different countries in three different languages. We have different origins, we have different ideas about what 'success' looks like, acts like and where it lives.
Have you ever been to one of those painting parties where you and your friends all attempt to re-paint your personal copy of the same picture? None of them ever look the same at the end. Yet, somehow they all turn out just right for whomever painted it? It's kind of like that for the three of us. Except the subject of success and who gets to define it for whom seems to be a hot button. Whereas art appreciation? Not so much. At least not in our family.

What the last six months has taught me is; despite that we have each arrived at the same "Paint 'n' Party" destination out of necessity is that 'telephone' is a real game. And we play it every day whether we intend to or not.

How could all of us be so alike and so different at the same? Individuality is a beautiful thing. Most times.

At this party one of us doesn't want to have anything to do with the painting party - only feels obligated to be there and spends time looking up "painting" in the dictionary as though the rest of us are ignorant as to what we are doing, The other doesn't really like painting or getting their hands dirty so is making an online tutorial to post on YouTube complete with painting examples, places to purchase paints, an assortment of brushes and their best applications along with the comments from others. And finally, the third is just looking at all the dried out paints, the shoddy brushes they've been provided and is secretly trying to think of the best way to transform the overused, garage sale fodder of an example into something that they may actually want to display somewhere - otherwise, it's a monumental waste of time.

Our definitions of 'Success' stop being similar immediately after we move beyond the point that we use the same alpha characters to represent the idea and they are in the same order.
S  U  C  C  E  S  S
At least two of us do, the third thinks in a language other than English.
I know, it's complicated, right?

More important, before the three of us arrived here, we did not understand why any of this was important - so it's been a long road for each of us. We were each simply 'right' and never doubted our understanding - ever.

Our mutual and different ideas are so hard to reconcile because they are all correct and appropriate. Yet, does that mean that they have to be mutually inclusive? or exclusive? I don't believe it does. I'm afraid that this is another area where we have a hard time agreeing.

For a while I wasn't convinced that these definitions needed to be reconciled, I now believe they might - for the sake of revealing expectations (and protecting my sanity). This task gives me reason to consider whose definition is most important - which I haven't been able to figure out. That idea might be incorrect. I don't see why one needs to be more important than another. They are all important and relevant. I believe it might be more necessary to understand and accept one another's terms than it is to fall in line behind one and disregard the others. This is still a democracy, right?
Is there no room for interpretation?

What is art without interpretation?

We are three headstrong, opinionated and individual people so this will be the most difficult aspect of this process. For each of us, a certain amount of compromise will be required. Not one of us, or two of us, but each of us in part must be willing to both concede, respect and accept.

The difficult part as a parent is being agile enough to move from being an active decision implementer in a child's' life to being only an influencer. In other words, I (we) cannot expect to tell our son what to do any longer. He is 20 years old. I can only give him guidance, tell him my experiences and let him know that I support what ever he chooses - then let him go free to make his own choices.
This is a lot harder for my husband who sees things in much more pragmatic and linear terms - as well as obligatory - when they are necessarily bound to the strings (bridge cables) of the bank account that pays our son's way through this educational maze.
He so badly wants to be able to make demands and require certain behaviors because he offers financial support. Sometimes he can and then he is happy. But much of the time he cannot and it irritates him to the point of apoplexy. He hates that he cannot coerce and control how is his intentions are valued by others.

My son is 20. He is Autistic. He made the decision to go away to college on his own. He decided, with help from advisers, which classes to take and what his area of study would be. He made it through the first year of school on his own terms. He passed all his classes and joined a Bible Study group and held a student job on campus. He worked very hard at making friends. He diligently attended every sporting, social, academic and entertainment and or health-club event that the school and community offered. Sometimes at the sacrifice of his grades - but he did it. His priority was to make friends and be strong enough to leave my home. He didn't especially care about his grades so long as he passed. What he really wanted was friends. He went to college to learn to make friends. Most of us learn this in kindergarten. My son has been struggling with this all his life. I suppose he decided to accomplish this AND a college curriculum.
He made it.

He still needs help remembering to do his laundry, take out the trash or turn in homework and papers and projects. He refuses to remember to bring plates, glasses and half-eaten snacks back to the kitchen from wherever he was when he ate them. He doesn't understand why putting a dirty fork in his desk drawer or the remains of his meal in his backpack or pockets and leaving it there for an eternity presents any sort of a problem - sanitary, organizational or otherwise.

He will probably always need the support of someone. Who of us doesn't really? Isn't it always nicer to have someone baking us up? Despite how capable we are?
These days, he is happiest when he finds that he actually can cope with problems, find solutions and work through trouble - on his own as much as possible. If he cannot, he knows he can call. we'll be there. we may not agree, but we'll be there as best we can.

I am the Lion, my son is the Wizard

My son left for college seven weeks ago. His transition and mine, although decidedly separate, occurred in tangent. Each were equally difficult both to live through and to witness. We were  uncomfortable and heroic but for entirely different reasons. In short, I have missed him incredibly. I believe he has missed me too.

His moving away is very much a double-edged sword. He needs to go to college. I understand that and so does he or at least he will one day. He needs to grow personally and socially. I know all this is right and true, but knowing has not made it any easier.
I miss him terribly and he misses having me around to lean on. I know that life for him is and will continue to be difficult without me in his circle all the time.
He is struggling. I know it. I can see it in his withdrawal. I can hear it in his lazy, disconnected tone. He is jumping through academic hoops and entirely miserable some nights. He says he feels 'lonely', 'lost' and 'out of control.' There are no words more difficult to hear as a parent.
The strange part is that he is doing well in school. Academically he is doing okay and even improving since the beginning of the year. He has found a job working for a person he respects. Personally and socially, he is floundering. From what I have seen, it is not for lack of trying. What I have seen of him as he tries with all his stamina and effort to 'fit in' .... is the my son has somehow turned into the bravest person I know.

Oddly enough, despite that he says he is lonely, no matter that he claims he has no friends. regardless that, to me, he appears to be miserable more often than not, he is flourishing in his own way. My son always has gone about tasks in his own way and by his own method. I should not really be surprised by this. But I am. I am surprised and thrilled that he has endeavored on a plan that I did not and could not conceive - yet it's perfect for him. I know that now. At first, I thought I needed to put one together for him - one that made sense to me. Finally and after many anxious nights and days, I gave up attempting to force him to engage on my terms. I had forgotten what I already knew and learned.

At this age, being on the edge of adulthood, my role in his life has transformed. I am no longer a director and or an enforcer. I am an influencer. What that means is that I no longer get to decide anything for him. I no longer get to declare directives. All I can do is voice my concerns, relay my experience(s) and hope, know and pray that he makes a good decision - whatever that ends up looking like.

On my last visit to campus he was up before I was, had made himself breakfast and set the dishes in the sink. After breakfast he seemed almost chatty. He told me about all the activities he had attended during the week and that he has been trying to get more exercise and eat more to keep his energy and strength up.

My son is taking control of his life. He is assuming responsibility for his life, his needs and his self.

I did not recognize the young man I visited. This man goes out - all the time - even when he doesn't know anyone - even when the function is in a big, loud place, or a complicated social environment. He attends basketball games!! Baseball games, movies, barbecues, student gatherings where ever and when ever. The young man I encountered has taken up exercise so that he can spend time in the gym  - "to be around people." He commits to two-hour bus rides to sporting events in neighboring towns just "to be around other people." He has joined clubs and sought out the campus bible study group. He spends hours at the library - all in an effort to simply increase the chances that he might meet some other students and form a friendship. To date, that hasn't happened and my heart breaks for him. He has tried and continues to try harder to make new friends than I ever would have.
He is so incredibly brave because he is starving for friendship.

Not surprisingly, he lives just short of defeat. I can see that he hurts deeply. I can stare at 'lonely' in his eyes. He is shy and feels alone. I know that if there were a tangible target even if it was one that was in no way responsible for this sad time, he would lash out and try to hurt it back.

I see my son every weekend. I need to see him to make sure he is okay and he needs to see me to be sure that I am still there, that I haven't forgotten about him or moved on to an alternate priority now that he does not occupy most of my time. What he doesn't know is that the simple fact that he is not physically near me does not mean that he I will no longer keep him as a priority needing tremendous amounts of support, love and care. His remoteness means that he is an even larger priority in my life than he was while we shared a home. I have learned to provide all the support that I possibly can in an entirely new way and through wholly different means. There is only so much I can do and a limit to what I can offer. I can do laundry, I can provide moral support. I can make sure he has food he likes and that there is enough there to eat for someone who really doesn't care if he eats or not because loneliness has buried his hunger. There has never been a more critical need for 'comfort food.'

Since he has moved away there are tasks and responsibilities that he must necessarily assume total accountability for. Eating enough and as often as he needed to was a huge challenge the first semester. Keeping track of his belongings has always been a challenge. Now that he is on his own there is nobody close to help him find his Student ID when it goes through the wash or his last five dollar bill abandoned in his sock drawer. People don't understand his habit of hiding things in close, closed places. Why would his car keys be stuffed down between the sofa cushions? I don't know, I simply know that they are and understand that my son likes the way this type of space feels; surrounded, a little tight, but warm and cozy. My son is beginning to understand his own habits.

I don't mean to make it appear that my son is a total bumbling misfit in his new environment. I truly believe that most people when placed in similar situations struggle with all sorts of issues. Some far heavier than those my son faces,
There are reasons I don't easily recognize my son as he once was. He has grown, He has matured. He is becoming the man I knew he would and I could not be more proud.

How exactly, I don't know. He is courageous, He is stronger than he believes. He is learning to be in control of more aspects of his life with every passing day despite that it is difficult and unpredictable. He is truly amazing to me. I watch and am continuously in awe of his perseverance, his unwillingness to quit, his determination to reinvent himself to capture more and more responsibility, his relentless pursuit of the friends that he wants and needs and his simultaneous patience with what is in store for him.

Even though he is in emotional pain and discomfort, I know that he must go through it and come out intact and on the other side to reap the benefits of this life lesson in ways that will require him to grow and mature into the remarkable person he will be.

Nobody else sneaks up on me repeatedly throughout the day to yell-whisper, "Boo!" in my ear from behind. How can you not miss someone who loves to play?!
Nobody else asks if there is anything I need them to do for me - even if it's ten o'clock in the evening.
Nobody else would rather be home with me, even if we are separately busy, than anywhere else.
Nobody else will join me in a room just to share my space with me and smirk at me as I notice his presence the way he does.

I have missed him so much. I have also worried about him handling such a huge change in his environment, fretted for him and his ability to find friends and connections and ached for him when he hasn't,

The first semester is over, He passed all his classes, got himself registered for the next set, ordered his books and began again. He kept his job and continues to try as hard as he can - at everything.

Some might say that he should be trying harder. I would ask them by whose measuring stick should anyone gauge their work if not their own?

I could not be more proud. He is a remarkable young man - capable of so much more than my measuring stick ever accounted for. I am so glad that he chose to throw mine away and use his own.