Autism

Slaying the Dragons

“You really are lucky” I hear the words, over and over. I believe them too, knowing full well that this could be worse. Most days, I am thankful. I repeat the words to myself. I remind myself of the fact that I am, indeed, lucky. Lucky because while autism is a big part of our lives -there are no aversions to food. Lucky because while autism is present -for the most part, we live our lives mostly uninterrupted. We have our routines and schedules -but things change. Life happens. We don’t always go with the flow -but for the most part, the bumps we hit are small.

We are lucky. Really. I get it. That for all autism is in our lives -we can handle it.

I say all this because there are days that arise when I don’t feel lucky. Days when I have to go to school and collect a child who decided that he didn’t want to go to school. Days when I have to bring him home, and watch, helplessly as he battles it out. Days when I wish he could just tell me what was wrong -was it too much unscheduled mayhem? Was it too sunny? Was he too hot? Did someone hurt him? Scare him? Did he have a bad dream? Is he confused? Frustrated? Why? So many questions -and no answers.

I try reminding myself of the good stretch of road we have been down lately -the transitions he has made, the huge accomplishments in his life, the major milestones he has passed. The countless days where he hasn’t been upset, or scared, or hurt, or angry -or whatever else…

I try.

Because days like today -man, they hurt.

Days when all you can do is buckle up and hang on -because you know it’s going to be a long ride -and you don’t know when it will end. Days when the plans you had go out the window and you clear your schedule and count the seconds in the minutes and try to remember to breath. Days when you try so very hard to remember that this boy -the one here, right now -is not the boy that left for school this morning. That he will return. Even though you don’t know when. Days when you try not to let the negative voices take over -and fail, because when you are down -they kick you. Hard.

I try to hold onto those words. I lock myself in the bathroom -listening to the screams coming from the bedroom. I echo the words to myself “You are so lucky” in hopes that they stick. But they don’t. Because no words can touch the reality that we are existing in. Nothing feels lucky about this very moment -the moment that when nothing matters. I can’t help him slay the demons that are attacking his mind, I can’t determine if he is suffering about the size of his pants or the harsh words whispered to him at lunch -and really, it doesn’t matter. It is all so difficult, so harsh, so hard.

He thrashes in his room, kicking the walls and pulling his hair. He yells some, but mostly just quietly organizes his thoughts -the thoughts that have come unraveled and cause unneeded chaos in his mind. The thoughts that no one but he knows.

…and just as quickly as it comes, it ends. 7 hours and some odd minutes later -he returns. His hair a disheveled mess, a scratch above his left eye and a few bruises on his arm. His eyes are tired and heavy, he looks defeated. He cries at the drop of a hat and goes to bed an hour early after rejecting dinner. I look in on him, the aftermath of the day weighing heavy on my heart, the negatives in the world taking over and I whisper to no one in particular – “We are lucky.”

Because we are.

We are so, so lucky.

Tomorrow we will get up, he will work through his routines and go to school as if nothing happened. It will take me longer to recover -recover from the negative thoughts that flooded my mind and the aftermath that comes from trying to process the day. But we will make it another day.

We are lucky. So, so lucky.

Never Enough

The weeks leading up to the first day of school are often stressful and frustrating. While most people are counting down the days until they are able to drop their kids off and have a much needed break, I am racking my mind for ideas to keep a certain kids clothes on all season long. I am thinking up of all the possible things that could and will go wrong -and solutions for them. I am trying to remember if I signed all the papers, met all the people and agreed to all the things.

Chances are I missed something. Chances are there is going to be at least one person who judges our mishaps along the way, and while this silent judging rarely bothers me -it is a new school, with new teachers, new faces and new people to impress.

All this newness also means there are going to be the inevitable meltdowns along the way -from both the kid and myself. And probably a few teachers. When the school season finally does come to an end, we won’t sigh relief -because it will mean ironing out a new normal, a new routine, a new schedule -just after we got used to this one. I don’t complain about it, I don’t talk about it, and I rarely mention it. It is what it is -it comes with the responsibility and the process. We all have our thorns. This is mine. This back to school business.

I bought all the pencils and binders, books and packs. I bought shirts and shoes and jeans that I know won’t get worn. I bought a lunchbox that will carry his lunch to school and home again -day after blessed day, because hard as I try he will not eat unless he is in the comfort of his home and everything is as it should be. But still, I pack the lunch I know will get thrown away because someone might question if I don’t. I buy the shirts I know won’t get worn -because at least it will look as though I am trying. Not hard enough, never hard enough -but at least trying.

The morning starts the same way it does -every day. With a bowl of cereal and a pile of TV remotes. Quietly in the early hours of the morning he gets cereal and remotes and talks himself through his day. I don’t know what he says, or what he does -but I know it works and I know it doesn’t hurt anyone and so I let him go. I throw the cereal away a few hours later, right next to the cereal from the day before -because he doesn’t eat that kind. Only the other kind. Only after his morning routine. Only once the cereal has been thrown away and the remotes accounted for. Only then.

I try not to show the panic that has settled in next to the guilt, panic about how the day is going to go down, about how the year will pan about, about how nothing ever goes as planned and this certainly will be no different. Guilt over not doing enough, not trying hard enough, over doing too much and not enough. Circles upon circles of endless thoughts.

The drive in is quiet. I step around the fragile questions I am not sure if he has or not -trying to settle my nerves as much as his. Trying, desperately to make this seemingly mundane and normal task -just that, when it is anything but. Trying to fight away the thoughts that crowd my already fragile mind. Hoping, desperately, for a normal moment when it is anything but.

He walks through the school that we just visited not even two days ago as if he has been there for years. He ignores his teachers and gets straight to business making himself at home with something he shouldn’t be touching. “He will be fine.” I tell no one but myself, and then I leave. Because I know after years of doing this that ripping the Band-Aid off quickly is better than slowly.

I am alone with my thoughts for the first time in months. Alone with nothing but myself and the stale air. Alone. The perfect time for all the jumbled thoughts to align and make force. I only dropped one kid off this year. Only bought supplies for one backpack. Only arranged for one kid to go to school. Only made lunch for one box. Guilt for not trying hard enough. For pushing too hard. For not seeing things earlier. For not stepping in sooner. What went wrong, and why? The questions that never seem to have answers flood my mind, because for now -I can’t be bothered to push them aside.

This one has come so far -the one they said wouldn’t. The one they said would never make it to seventh grade -is now entering the seventh grade. The one they said wouldn’t understand laughs at his own jokes. The one they said wasn’t worth it. The one I drug, kicking and screaming, yelling and biting down the halls of school only to be called back ten minutes later because it wasn’t working today. The one that hid in the corner screaming for hours at a time. The one that fought, tooth and nail -everyday, all day. Is now walking into new situations like nobody’s business, leaving me in the dust -the way it should be.

But the one they said would be fine. The one they said was just having a rough year, a rough patch -just needing some extra time. The one they diagnosed, and treated -that one, isn’t here. For reasons I still have yet to understand. The one that was supposed to be ok -wasn’t. He wasn’t here for the first day of school. He won’t be here to get off the bus. Won’t be here to complain about his teachers or homework.

Too much, not enough. Never enough.

I try, because it’s the only thing I know how to do. Even when I don’t know if it’s the right thing to do. I try, because if I didn’t try I would give up. I try, because there is nothing else left to do. I try, because he deserves more -he deserves better. But it will never be enough. The intermingling of the thoughts, the twisting of ideas, the comprehending of the future. Binding the past with the present and trying to make a future.

It’s hard.

Because it’s never enough.

In His Absence

These are new grounds for me, this helping a child navigate grief. More specifically, helping an autistic child who is non-verbal, navigate grief. I don’t know how much he understands, or what all he really comprehends about the whole situation. I don’t know what questions he has, or what he is feeling. I don’t know what is going through his mind. I don’t know if he is experiencing the normal stages of grief -or if he is handling things in his own way -the way he does everything else.

I just don’t know.

I watch him, carefully, for some sort of clue. I look in his eyes when the opportunities arise, I watch him carefully open the containers that hold the items I have packed away. I watch him look through, selecting one or two things before hiding them away under his own bed -where he puts his most beloved treasures. I wonder what is going through his mind. If he wonders if he is next. If he wonders why his best buddy is suddenly just gone. Didn’t they have something special? Wasn’t he supposed to be there for ever and a day?

What goes on inside his mind -is beyond me. I try my hardest. I really do. I understand the importance of body language and tones. I know from the way he screams if he is happy or upset. I know from the way he twists his arm if he is frustrated or just tired. I know that when he starts picking at his eyes and hair that he is having a hard time understanding something. That he is frustrated. I know that when he slides under his bed -he doesn’t want to deal with people. That he wants to be left alone.

I know that he won’t eat in public, that he prefers to go with no pants and that he is his happiest when he has space to be himself without interference. But I also know that the bond he and Dylan had was something that can never be replaced and something that will always leave a hole. I know that he used to wait by the window, watching and waiting. That he followed Dylan around like a lost dog, that the small bits of favor that he showered on him went much further than any other action. He would do just about anything to be with him, to be acknowledged by him.

I know that if he could, or did, speak -he would have said that when he grew up he wanted to be just like him. I know that Dylan knew this -and while he was your typical teenager in many ways -he often would comply and shower a little bit of affection on his younger cousin, who might as well have been his brother. They shared many moments together and apart…

…and I am not sure how to go about healing the wounds I know were left behind.

All I can do is watch from the sidelines. Try and gather clues from the way he reacts. Try and be understanding when he has bad days -knowing that he too, is struggling in his own ways. Ways that are perhaps, much harder because he cannot verbalize what he is feeling. I can’t offer him help because I don’t know the extent of his suffering, even though I know it must be deep.

He loved him -and he was loved by him. They fought, they bickered, they argued. With each other, against each other, and behind each other. But they also had a bond that was unbreakable. In ways that I thought would carry them far. If for nothing else, they had each other. Regardless of what happened -they would have each other. They would have each others backs -in good times and bad, and that would carry them far.

Just not far enough.

While one boy got his final wish -to depart this world and no longer be shackled with the pain and aches that this world could not heal, another is left to grapple with his absence. I don’t know how to explain all of this and more to a boy who still looks out the window, waiting for his hero to step off the bus. So instead, I sit with him. I watch the horizon, knowing full well that he won’t be returning, but wishing -for just a moment, that perhaps -he will.

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If for nothing else, to bring some answers to a boy who thought and still thinks, the world of him.

The Dance of Life

Yesterday morning the alarm went off waking me up from a deep sleep.  Assuming it was still Saturday and not, in fact, Sunday, I muttered something about being forgetful and setting alarms -and turned it off.  It wasn’t until we were 30 minutes behind schedule did I wake up realizing that it was, in fact, Sunday.  It wouldn’t have been that big of a deal (I can shower in under 5 minutes if need be) but waking Josh up and rushing him through the morning wasn’t happening.  It threw his entire day upside down and by the time the sun was threatening to set, he was asleep.  Exhausted from the amount of effort he had to put into the day.

Simple things -such as not being able to run through his morning routine -are vital around these parts, and most days -I don’t give them a second thought.  They are what one might call, normal.  At least to us.  He wakes up early, shuffles out to the living room where he watches his morning TV ads.  He likes to be alone in the morning.  Some prefer to wake up with someone beside them, some prefer coffee -he prefers solitude.  I can respect this, and let him do his thing while I oversleep or prepare for my own morning.  Regardless, we stay out of each others way until TV ads are over and I have consumed enough coffee.

If I am still asleep he will slap me across the face to wake me up -and if I am already up, he will move onto the next item on the morning schedule.  He picks his way through breakfast, we fight it out over clothes, morning hygiene and if we are both lucky -we will be out of the house only 5-10 minutes late.  He goes to school, I go to work.  I don’t see him again until later that night -after he has put in his hours at school, therapy, socialization, and everything else that is deemed important.  Things that stretch, push and pull at him -things that make him uncomfortable, angry, irritable, and frustrated.

By the time we reconnect he wants his alone time.  This can be anything from hiding under the bed to laying stretched out on the floor with nothing but his underwear.  It depends on the day, the trials and troubles.  Depending on his location and the amount of time spent in solitude I can gauge how his day went.  I don’t need to search his backpack for notes, clues or hints.  I know it all by watching him.

The world doesn’t operate around him, and as luck would have it -not everyday is the same as the day before.  These small changes wreck havoc in his mind.  He doesn’t flip out like he used to.  He doesn’t panic, run and scream.  He doesn’t claw his way out of his own skin.  He doesn’t bite, kick, or hit.  He used to.  He doesn’t drag his feet to school.  In some small way -I think he might even enjoy going to school.  The routine, the familiarity, he is a people pleaser and there are plenty of people to please at school.  But at the end of a long day -he likes to unwind, and I try to stay out of his way until he is ready.

After homework and dinner are complete, clothes taken off and put back on -he flops into bed.  Lately, due to various circumstances -we share a bed nearly three times as big as the one I am used to.  He draws -marking the top blanket.  I take the red pens away, he glares.  He stashes the remote controls.  Lines them up.  And laughs when I cant find them.  I laugh too, because in his mind -I like to assume he is playing a joke on me.  I watch him draw lines, make squiggles and create master pieces.  Something that just a few years ago -he wouldn’t do.  Holding a pencil was enough to make him scream.

Eventually he falls asleep -and for a few minutes I sit.  Watching his chest rise and fall.  Finding the comfort in the even breaths he takes.  Surrounded by chaos and confusion, the simple things -such as watching his chest rise and fall gives me comfort.  I try not to think about the things in life that keep me up at night.  The unfamiliar future.  The uncertain condition of the future.  The things I don’t know or understand.  The innocence of children dying.  The pain and sadness.  Instead I watch his chest rise and fall, and take comfort in knowing that in this moment -this small window, this tiny fragment of life -I too, can breath easy.

Tomorrow isn’t certain.  Life is unfamiliar.  Stepping out and changing who I am is not easy.  But I owe it to him.  I owe it those who are no longer here.  I owe it to those struggling and hurting.

I can’t promise him a smooth day, a better tomorrow or a bright future.  But I can keep promising that as long as I am able -I will fight to give him the best that I can.  Whatever that may look like.  Even if the best is dancing carefully around the landmines in his life -trying to give him space, comfort and peace within these four walls so at night -he can flop on the bed, take a deep breath -and fall into a sleep with dreams that will one day, come true.

Forever

Someone once told me that things happen for a reason. I never have been a big believer in this, since most of the things that have happened -don’t seem to have reasons. But somewhere the logic has hung out in the back of my mind and I have attempted to build on it. I have tried to believe that things may happen for a reason -that perhaps is unknown to us. That maybe things happen to us to benefit someone else. And while that’s a really, REALLY sucky logic in a lot of cases, it’s the only thing I could ever think of to make that logic work for me.

When I made the final decision to get the kids back, there were complications that surrounded just about every aspect of it. Especially when it came to Josh. Red tape so thick that no one assumed I would ever see him again. Let alone have custody of him. And while I knew there was a possibility that all the fighting I was planning to do would come up empty handed -I made the decision to fight to the end. Just in case there was that small .01% chance. Just in case.

The years surrounding him first coming home were hard. They were more than hard. They were downright crappy. Difficult. Stressful. Frustrating. Introducing three kids into a new environment is hard in normal circumstances. Trying to fill the shoes of everyone and no one all at once wouldn’t be easy in average situations. But throw in some additional complications and you have the perfect storm. I questioned my decision, countless times. I wondered if it was right. If I was doing the right thing. People told me, advised me, even begged me -to let him go to a home that would be able to help him.

“Focus on the other two. They have potential. They NEED you. Josh doesn’t understand.” The words that still try and tear at my mind on days that are difficult.

Today I walked into the school where Josh has attended the past few years. His last year at this school. I know his teachers by name, I know the workers, I even know the janitor. I have spent more time in his school than any of the others -because of all the ups and downs and struggles we have faced there. In between those walls. I have sat across the desk of countless principles listening to the woes of the day. I have sat through meeting after meeting. We have had plans and schedules that have failed. And many times I wondered if putting him through the stress of school was even worth it. “He doesn’t understand.” the words grated.

But today I sat across from his teacher, and for the first time in my life heard positive reviews about the little boy who I used to have to drag through the halls kicking and screaming. No he’s not perfect, yes he struggles -he will always struggle. We all do. He will probably need an assistant to help him make it through the rest of his classes. He might even need additional classes to make up for things that haven’t sunk in. But he is, as they said “A bright happy child” who they are going to miss.

Those words are words I never thought I would ever hear. And they sunk in deep. Down to the areas of my heart that really needed to hear them.

I made a promise years ago that I wouldn’t give up. Not on him. And not on any of them.

I might fail. I know I will. But I won’t give up. I will never give up. It won’t be easy. It never is. But I will never break my promise to these kids. I am not going to give up on them, I will fight for them when they cannot fight on their own, and I will choose to believe that the experiences I have been through have only given me the experience I need to help them when they cannot see the light. I will choose to believe that everything has happened for a reason, and that reason might just be to help someone that I care a whole heck of a lot about.

I’m not giving up on him. No matter how hard and how difficult it might be.

I’m in this, forever.

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The Latest in Therapy

He grumps his way through the morning, obviously something is a miss, but with the way things have been going lately, I can’t really blame him.  I try to help him avoid conflict, but at some point during the day, be it the socks, the cereal, the position of the rain – its inevitable.  He’s going to have himself a break down.  A full blown break down.  The ones that come when everything has just been piled on, higher and higher – until the smallest of things can break it.

I understand these kinds of break downs, and so I carefully navigate the confusion of the day with him.  Trying to give him the tools he might need to combat it himself, not wanting to overwhelm or smother him, but not wanting to leave him at it alone either.

Sometimes, I tell myself, it can work both ways.  The small things can help, and they can also break the entire day.  In today’s case, the small things broke the day.  The pressure of having to not only get dressed this morning, but go out of the house was too much, and by the time we made it to school – I knew it wouldn’t be long until I got called back.  That gut feeling, they call it.  I suppose.

Maybe I should have just taken him home and let him have the day off.  After all it has been a hectic, crazy few weeks and I know he too, is struggling.  With way more than anyone else knows.  I know he is trying to process things, and his mind is working overtime to try and make sense of the confusing, complicated world that he lives in.  And sometimes – it just doesn’t make sense.  But not wanting to give him a “way out” and wanting him to “face things” and hopefully be able to work through, I walked him in.

I filled his teachers in, and walked off as he pleaded with his eyes – for me not to leave.  I whispered that it would be ok, to have a good day.  Then slipped out while mentally begging for his day to just go ok.  I didn’t need his day to be stellar, or fantastic.  Just ok.  For my words to actually come through.  That by telling him it would be ok, that maybe, for once – it would be.

A few hours later, when I got the call that I was already expecting – I picked him up.  Tears staining his face, hair ruffled, fidgety and panicking.  Obviously…his day was not ok.  Because sometimes, the day just ends up not going good.  And the small things – his classmate said hello, someone sat too close, it was too loud, too bright, too itchy, too hot, and too cold -become too much.

I took him home, helped him out of his pants, and watched as he scurried for his bed.  He didn’t climb in, but instead under.

It’s the life we live.

It’s the way we are.

It’s how we roll.

When the day is just too much, the comforting things are in the dark, cool corners of the room – under the bed away from the world.  Pants are optional, but not preferred.

I called a babysitter, gave some last minute advice on not trying to coax him out, to give him space and when or if he came out – to just take it easy.  He’s had a long week.

When I came home, he had found his way out from under his bed, but hadn’t ventured far.  Feet up the wall, lying on his back, humming to himself as he traced imaginary figures in the air with one hand, and the other firmly planted in his mouth.  He didn’t look up when I came in.  He didn’t seem to notice, or have a care in the world.  He was in his world.

His world, where everything I assume, is just how it should be.  There aren’t too many people, too many noises, too much light, too much color.  His world is just the way it should be, how it should be, with everything just right.

As I look at him, pressed against the wall, I had a hundred and one thoughts flood through my mind.  Instinctively I wanted to feel sorry for him, for myself, for this life.  For everything that has gone wrong.  Instinctively, I wanted to scream and yell, and throw myself down there with him and yell that I just wanted it to be ok – nothing more, nothing less.

But instead I took another look.

He was calm.  He was happy.  He was peaceful.  He was content.

No, he didn’t have pants on.  At ten years old, he still occasionally sucks his fingers for comfort.  He pressed himself hard against the wall and hummed a tune only he knows.  His mind was probably running a million different ways.  He probably ran out of tears hours before, and most likely was exhausted from chasing away the millions of thoughts and emotions that flood him day in and day out – but he was happily tracing imaginary figures in the air.

He wasn’t scared.  Wasn’t fighting.  Wasn’t stressing.  Wasn’t in a panic.  He may just be onto something, this kid.

So if you happen to come over, and see me – laying on the floor tracing imaginary shapes in the air with no pants on – just know, I’m ok.

We’re ok.

It’s all just about how you look at it, I suppose.

A Different Approach to Awareness

I have a hard time with “Awareness Day” or “Awareness Month.”  Not just related to autism, but related to everything.  Sure, I sometimes join in.  But other times I don’t.  Because I honestly don’t know what to say about it, and what good it will do.  While I might not join the masses and picket on the street corners, I also wont jump them and tell them what they are doing is wrong.

Honestly, I think it’s the months and days, and moments in-between those “Awareness” moments that count the most.  The moments when I am beat down the hardest, and struggling the most – are the moments that matter and count, the most.  How I handle disappointment, and pressure, and judgment – all while I think no one is looking?  Is the most important.  And I fail.  So hard.  In those moments.  Which is probably why they matter the most.

I don’t care how the world perceives Josh.  I mean, to an extent, I suppose I do care.  Or else I wouldn’t spend so much time trying to prepare him for the world that lies ahead.  If I didn’t care, I wouldn’t teach him how to handle the disappointments and failures that are bound to come his way – and not just because he has autism.  But because he lives in this world where autism or not, you are bound to have disappointments and frustrations and its my job to teach him how to handle those things.

It frustrates me, that when people hear the word “Autism” they think a million and one different thoughts, and have books ready to teach ME how to teach Josh.  When they hear the word they look at him differently.  Some look at him with interest, while others roll their eyes.  Here comes autism again.  Marching through the streets, demanding equality, and free rights.  Here comes the problems.  The demands.  The labels.

People have vocabularies.  They have words they use.  Words that mean things to get their points across to other human beings.  Many of us, speak different languages.  Spanish, French, English.  The native tongue of one, is not the same as another – and often times, we go out of our way to learn a new language JUST to be able to communicate with others.  Because communication – no matter how done, is vital to human survival.  When you go to France, you learn French!  You don’t demand the French learn English to communicate with you.

When people hear the word “Autism” their vocabulary has already been filled with so many things, that they THINK they have the proper definition.  They THINK they know everything there is to know about the word.  When really, no one does.  And no one should.  I want people to know Josh, as Josh.  I want them to WANT to learn his language, not just because they have to, but because they WANT to.  I want them to want to.  I want them to want to communicate with him.

But on the other hand…

I cant expect it.  No amount of picketing, or protesting, or demanding is going to do any bit of good.  I cant go to France and demand they learn English, and I cant go to the world and demand they learn autism.  Or Josh.  Or anything else for that matter.  But what I can do, and what really matters the most, I think, is teaching Josh how to handle matters for himself.

I cant change the world.  I cant change the way the world looks at him, and how they will define the word.  I cant change the way the world will carry on, and bring awareness.  I cant change the way things will happen.  But I can change one little boy, and if possible, make his world a little bit easier.  I fail, 99% of the time.  And Ive come to realize that’s ok.  Failure is natural.  No one succeeds 100% of the time.  What matters most is getting up, and dealing with those failures – and turning them into something better.

Instead of trying to hopelessly change the way the world looks at Josh, I am trying to change the way Josh – looks at the world.  And show him, by example, that falling is ok as long as he gets back up.  Being different – is ok too.  Everyone is different.  How you treat those that are different, on the other hand – is what matters the most.  Expecting someone to learn YOU is hopeless.  But learning someone else?  Might get you somewhere.

Ill do what I can, to announce to the world that Josh is BEYOND the label that has been given to him.  And then I will turn right around, and show Josh that the world?  Is out there.  For him to explore, and navigate.  And I hope that I will be able to give him the tools he needs to pick through the bad, and find the good.

No, I dont down play it

Im unsure of how to start.  I know what I want to say, I just don’t know how to say it, and the blank page is taunting me.  The words of others ring in my ears.  The worries of what some might think hold the words back.  Before the pen touches the paper, I close the book and don’t write anymore.  Its been like this for weeks now.  I have something I want to say, something that I feel needs to be said – but the words are stuck.

Something that hasn’t ever been directly said, but something that I have always gotten from other people is that – many assume I downplay Josh’s diagnosis.  Not many will agree with my thinking when it comes to him, and very few care to hear me out when I speak.  I take what others say, apply what I think will work for him and leave the rest in the dust.  Because when it comes down to it – At the current time, I am the one making decisions for him.

I have always felt that part of Josh’s past, is his.  There are parts of his life that I don’t get into with just anyone, and pieces of his life that I will leave out.  Its his story to tell if he chooses to tell, and if he doesn’t – I am not going to go there.  Its not mine to tell.  All that is to say, he has come from a checkered past and been put through the ringer.  If he doesn’t want to wear matching socks – I am not going to make him.  Let me explain.

When Josh was first diagnosed with autism, he was also diagnosed with other things related to what he had been through.  At the time the diagnosis’s overlapped each other, and it was difficult to find a technique that worked for him.  With so much going on, attacking all aspects was a difficult procedure, and not one many wanted to share in.  Over the past five years, we have worked through some difficult areas with him.  Trust issues, behavioral issues, health issues, the list goes on and on.  And when it comes down to it, autism sits at the bottom of the list.

I don’t downplay this.  I read everything I could when it came to his diagnosis.  I read theories, facts, ideas, questions, answers, and then some.  I took the ideas and tried to make them all work – but all it did was frustrate me, and him – and we got nowhere.  We teetered on the edge of institutions, toyed with the idea of medications, and many sleepless nights were spent watching him.  Begging him to just give me SOMETHING.  Because I was running out of ideas.

Five years ago – I took a week off of work because the phone calls to work were constant, he refused to stay at any daycare, he wouldn’t settle down, he would eat, he wouldn’t sleep, he was only causing harm to himself.

Over the past five years, we have made our way to where we are today.

I don’t downplay his diagnosis.

I just tend to up play him, as a person.  Not a label.

Instead of treating the symptoms – I want to get to the bottom of things.  I didn’t want to medicate him – not because I didn’t love him, but because I knew there was something causing him to react the way he was and I didn’t want to simply suppress this.  Josh doesn’t speak with words.  He doesn’t choose to tell me that he is scared, that things in his mind don’t make sense and that he just needs to know someone will care for him enough to come back.

Medicating him would suppress the only way he has to communicate.  It would silence him, for good.  And yet many well meaning people told me I should simply medicate him – because I didn’t understand what he was going through.  I didn’t understand how badly he was suffering.

I didn’t KNOW what he was going through.  And yet somehow, from the other end of the world – they knew.  They understood.

I spent countless nights watching him fight in his sleep.  I read every single recorded word that was written about him, and listened as they told me about the things he had went through.  I held him as he screamed in terror and clawed to get away.  I sat by helplessly as he hid under the bed, pulling his hair, and making himself bleed.  Yet somehow – I did not understand what he was going through.

This morning – he woke me up just by walking across the room.  I watched as he went through his morning routine.  Turning the tv on.  Talking to himself.  Playing his own games.  And making sense of the world around him.  He caught me looking, and smiled.  I couldn’t help but smile back.  We continued through the morning routine, taking a few extra minutes to try and guide him through the process of getting dressed himself.  A task that many would have already accomplished at his age.

And then he put on two different colored socks.  And I let him.  Because those things?  Are great accomplishments for him.  He walked out the door, raced me across the street and willing went to the babysitters house.  He waved from the window as I left, and when I picked him up – he wasn’t hiding in the corner.

When he takes his pants off at school, I laugh.  Not because I think its good practice to take your pants off in public, but because I know it means hes comfortable.  And because it seems one step closer to that greater goal.

Years of working with him.  Years of SHOWING him that I would come back.  That I cared.  That I did love him.  That I was going to do everything I could – even if I didn’t know what that was, have finally paid off.

Yes, he has autism.  No, I don’t downplay that.  But after everything else that we have already worked through – it doesn’t seem like that big of a deal.  Im not going to tell the world to change because of him.  Im going to tell HIM to change the world, because of who he is – and those who choose to accept him, will be better off for it.  Autism and all.

Trust

I don’t trust a lot of people.  I mean, in my opinion – I trust way too many people, because I have to.  Because if I didn’t I would spent a lot more of my spare time going crazy.  And I don’t really have any spare time to go any MORE crazier with.  And so it is, I trust people.  Out of necessity.  I trust, because in order to live this life – I must trust.  And if I think too much about it, I will go even crazier.  I try not to put too much thought into it, I try not to consider the what ifs, and maybes of life – because I have been there, and go there often enough.

Josh trusts even fewer people.  His trust takes years to build.  He doesn’t trust out of necessity.  He doesn’t trust because you tell him to.  He doesn’t have that blind trust that many kids have.  He just doesn’t.  And for good reason.  Because too many people, have shattered that trust, too many times.  He doesn’t trust anyone – unless they prove to him, that they can be trusted.  Its taken us years to get to where we are, and many hard, painstakingly challenging days to reach the point where we are.  To get to the point where he trusts me.

And yet over and over I heard it.  People tell me how to raise him, what to do for him, how to deal with him.  Many well meaning people trying to take over the reigns.  “We got it now” they seem to say.  “Trust us.”  Im not sorry, but Im sorry – this is one area that I will not succumbed to trusting because of necessity.  He.  Trusts.  Me.  And I will go out of my way to protect what most are born with.  I will go out of my way to protect the trust that has taken him so long to build.  It isn’t something I take lightly, and its something I wonder how others can be so flippant with.

How then, does one crush the trust of others?  And why?

While I go out of my way to protect what is there, and has taken years to build – others trample daily without a care in the world.  Without a second thought.  With hardly any notice.

Much like the domino effect, if someone betrays the trust I have built up in them – the others go down as well.  Until I can reestablish in my mind, that people are once again worth trusting – all trust is on hold.  Which is what worries me perhaps the most, about Josh.  Sure, he trusts me.  But what about the other few he trusts?  Will there come a day when the trust he has so carefully put in them – because crushed?

While I can do everything in my power to keep him trusting me, there are others who might not have as much care.  There are others, who will betray his trust – and leave him scrambling to pick up the pieces.  Will he stop trusting me?  Will the domino effect carry on to another generation?  Will the day come when he no longer trusts me, because of someone else?

So often people take trust for granted.  Take it or leave it, they don’t hold the fact that SOMEONE trusts them, with as much weight as they should.  In a “Me, Mine, Here, Now” world, people are quick to forget that there are others in this world too.  Others who maybe have to work a bit harder at something that comes easily for them.  And in a moment of selfishness, they forget.  That their actions and words have an impact on someone else as well.

I want him to trust others, I really do.  But I want them to be mindful, and know just what it means – when he fully trusts them.  And know, that if they were to betray his trust – his entire life would be shattered.  He is not self sufficient, he doesn’t talk with words, he couldn’t find his way home – and yet.  He trusts me to get him through the day, much like blind leading the blind – he knows I will carefully navigate these treacherous waters, and he trusts me to do so.

Don’t trample what little trust he has.  Don’t shatter what he has worked so hard for.  Please don’t make us start all over again.  If someone trusts you – don’t betray them.  Realize that trusting you – might be the very thing that keeps them alive, and destroying that trust – might be the very thing that kills them.

‘Tis The Season

When kids are little, it seems that everyone is set on telling you to not worry.  “Don’t worry they wont be doing _______ in college.”  I guess its true, most kids probably wont be wearing diapers while walking the halls of high school, or college.  And a majority probably wont be carrying their comfort items with them either.  The thing with kids that are a bit …. Different than the normal, run of the mill kids is that no one tells you not to worry.  They tell you to not let them do this, don’t let them do that, make them do this or that.  Their reasoning?  Quite simple.  “You don’t want them to be doing THAT in college do you?”

The first time someone said that to me, I didn’t say anything.  Honestly I didn’t know what to say, and was somewhat embarrassed that my kid was the only kid carrying his bear, box, blanket, or whatever he deemed important at the time.  Now?  I would have just smiled and said “If he makes it to college he can do whatever he damn well pleases.”  Because some days, Im not even sure hes going to make it through grade school.

With Christmas on our heels, everyone is talking about the biggest, greatest, next best gift that their kid wants.  Kids are running around yelling absurd things that they want under the tree, and many parents are wondering if they will disappoint if they don’t deliver.

Josh?  Has never once said he wanted something.  Hes never once begged to buy something, and never shown much interest in gifts, presents or new toys.  Infact he would probably be just fine to let the whole gift giving/getting thing go.  In years past, I havent pushed it.  There have been bigger fish to fry and when Christmas rolled around, there were bigger issues pressing besides getting the kid to beg for a toy.  Its just not something that was big on my list of accomplishments for him.

This morning as I got things ready to go for the day, I couldn’t help but wonder.  What is his future going to look like?  Its honestly the first time I have ever wondered or worried about one of their futures, because honestly getting through this day, this problem, this year has been a big enough problem to tackle.  But the thought ran across my mind.  It was only a brief moment of wondering, but something that followed me through the entire morning.

When I dropped him off at school I couldn’t help but wonder what it would be like when he was in high school.  Would I still be dropping him off?  Would he ever reach the point of embarrassment that he is the only kid being dropped off at school by someone?  Would he ever be asked questions that he didn’t know how to answer?  Both the kids have been asked, at some point, in some variation about why they live with me, and they have both struggled with how to answer.  Would he be in the same position some day?  Has he already been?  Does he have thoughts and wonders and dreams?  What DOES he want for Christmas anyways?

I shouldn’t really worry about these things, because if I took the time to look back over the past years, I will be able to make remarkable notes on how far he has come since that first day he came here.  But I do still worry.  I worry that Im not giving him enough, that Im not encouraging him enough, that I don’t spend enough time trying to give him things that he can take into the world instead of just doing it myself…

There was a time, not too long ago, that I seriously worried he would be sporting diapers to high school and he really would not care.  I worried that the bear would follow him all the way to college, and he would never make any friends.  Before that I worried that I would always be dragging him (literally) to school and wondered just HOW I was going to drag a much bigger Josh.  I had solutions, ideas, and fool proof plans that eventually fell through – because he eventually potty trained, his bear stays at home most days, and it’s the rare day that I have to drag him to school.

Because those problems have mostly sorted themselves out, I now find myself worrying about OTHER problems.  I don’t know what his future will be like.  I don’t know if he will ever make it to college.  I don’t know if he will ever become a lawyer, a judge, a brain surgeon.  He might be just as happy being a ride along in a dump truck.  And if he is happy with that, then I should be too.

One of the many things that he has taught me is that happiness comes in many shapes and sizes.  Happiness to one, is not happiness to another.  Just because one likes something, doesn’t mean another will.  In today’s age, its all about fairness, equality, equal rights.  And while Im not against any of these things – I think that sometimes it gets pushed a bit too far.  Instead of simply accepting kids how they are, guiding them down their own paths, and offering a strong hand to keep them from going too far – we try and force them into the molds and ideas that we would have for them.

Because if it makes ME happy then surely it will make him happy, when really, it should be the other way around.

No, Josh might not give a damn about any present under the tree.  He might not scribble out giant lists of magical wants.  He might not even ever demand a toy in the store.  But that’s ok.  Instead of forcing him into the mold of every other kid out there, I will try and encourage him and his dreams.  Instead of window shopping, we might just go check out the construction project and lets face it, its one less store I will have to go in, one less crowd I will have to brave, and one less thing I will have to worry about.