The kiddos

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.

“Happy Birthday”

The words don’t even seem to matter this year. They don’t seem to mean anything. Anything I hoped to say, wished to say, would ever dream of saying left that day. Saying “Happy birthday” just doesn’t seem right. Nothing seems happy, nothing seems right. Being 16 shouldn’t be that hard. Turning 18 shouldn’t happen in the grave…and yet here we are. Trying to put the words “Happy” and “Birthday” in the same sentence on a day that seems anything but.

Happy birthday kid. I wish it were different. I wish, that life was simpler. Easier. Better. I wish that you wouldn’t have been dealt such a crappy hand. That I would have seen sooner. That help would have been there quicker. I wish you would have found peace here. That you didn’t feel this was your only option. I wish. So much.

But mostly I wish that today would be going so much differently.

There just aren’t words.

There never will be.

On what would have been your 18th, on the day you should have been celebrating your freedom…the only thing left to celebrate is that you are no longer trapped.  You are no longer held here.  In a world you fought against for years.  I hope you found some peace.  I really do.  I really hope it was worth it.  I’m sorry it wasn’t enough.  I’m sorry it never will be enough.

The world may forget.  They may not remember.  But I always will.  As hard as I try, I can’t forget you.  I wouldn’t want to.  You may not ever have known how much you changed my life, you may have never seen how much of a difference you made -and it may be too late now, but on what would have been your 18th, I can’t help but wish -if just for a minute -that somehow…you know.  And never forget.

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.

PICT0020

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

Coming Home

He is coming home, and I don’t know what to think.

Seven months ago, when Dylan finally succeeded in ending his life -I booked a trip out of the country.  I left a month later -and in doing so, I packed Josh up and left him with friends.  Originally it was only going to be for the few months I was gone, but when I got back -I couldn’t pick him up.  It is hard to explain, but there was a force that just would not allow me to pick him up and bring him home.  I couldn’t even see him.  I closed the door to the bedroom and walled off those areas in my mind.  As terrible as it sounds -I just couldn’t do it.

Over the past few months I have debated heavily with myself, friends, family and others as well.  I have questioned every avenue.  I gave myself fully over to the idea of never bringing him home again.  My thought process was simple: I had already failed enough.  Most seemed to back this theory -in their own ways.  Not so much that I had failed, but that I wasn’t cut out to be what Josh needed.  Some ignored the question.  Others threw their opinion at me.

There was only one person who told me again and again, over and over -that I should take him back, no questions asked.  But this only made the choice more challenging, because I wanted the vote to be universal. Unanimous.  I wanted there to be no doubt that the choice I made was the right choice -and yet it wasn’t.  I couldn’t persuade either side to move to the other side.  I couldn’t unite the vote, and so it was split…and so was I.

I don’t want to fail him.  I didn’t want to fail Dylan either.  I didn’t want to fail any of the kids.  My purpose in everything I did was to better them, not fail them.  But as the weeks and days ticked on, my mind only continued to scream how badly I had failed.

…and then in a random twist of fate, someone mentioned something to me that would change my thinking.  They referred to Josh as a dog.  They said that they would be more devastated to give up their dog than I should be about giving up Josh.  Others would go on to call him a burden.  A responsibility to large for myself.  A hindrance.  They would say that I should leave him and explore my life deeper and further.  “Let go and live.”

The responses cut deeper than any of the two sides had cut before -and as those cuts healed, I began to realize that this boy?  Was not a burden.  He is not a dog.  He is not something that should be tossed around.  Yet that is exactly what is happening.  While the family he is staying with is nothing less than perfect and ideal for him -they don’t want to keep him forever.  If I were to decide not to keep him -he would go into foster care.

He deserves more than that.

I don’t know if what I am doing is right -and I don’t know that I will ever have that security or confirmation.  I don’t know if this is the right thing to do, I don’t know if this is me -failing all over again.  All I know is that right now -this is the decision that feels the least wrong.

…wish us luck.

Seventeen…

The air here is cold.  Colder than I remember.  I stepped out of the airport and was met with a bitter cold wind.  The kind that rips through every layer of clothing you wear and settles in -deep within your bones.  It’s cold.  Colder than I remember when I walk through the doors of the house.  The house that I haven’t been in for three plus months…even longer than that.  The house that the last time I saw it -really saw it, really lived there -things were ok.  They weren’t perfect, they weren’t even really good -but they were ok.  And I was ok with ok.  Ok was ok.

I’ve avoided birthdays this year.  Avoided them like the hot plague.  Avoided them with everything in me, and then some.  I ignored them too.  Did everything in my power to not remember, not acknowledge and simply not recognize them.  Them.  Birthdays.  A harsh reminder of what no longer is, who, no longer is.

Life lately, seems cold.  Colder than I remember.  The kind of cold that settles deep, deep within your bones.

I did everything I could to avoid today.  Everything around me seemed to be supporting this.  The daily calendars in most of the places I visited still read December 11.  And I was ok with that.  I didn’t need to be reminded that today was December 12, and I didn’t need to be reminded of what it meant.  I didn’t need another reminder -because reminders are everywhere.

They are in your room, in your bed.  They are in your closet.  They are even by the front door -where you shoes still sit.

I know it is probably morbid sounding.  But listen -the last time I was here -you were still coming home.  You were still holding out, still giving the false illumination that there was hope, that you were wanting to come home.  You.  Were still here.  So your shoes -they are still here too.

There is no harsher reminder -birthdays or not -then walking through the front door of a house you haven’t been in for a number of months to see the way things USED to be, and realize they are no longer that way.

See -I’ve been frequenting other houses for the past…probably nine months now.  House sitting, house hopping -whatever you call it, I haven’t been “home” for a number of months.

Coming home, coming back to this land -was hard enough.  Facing reality, pulling on the “I’m great, how are you face?” has been a challenge enough…but to walk into the home that was perfectly preserved -a chunk in time, reserved -was more than hard.

I have tried, really hard, not to be upset with you for the way things have ended.  Because as hard as it is to accept, it really is easy to understand.  But that doesn’t mean that I haven’t been upset.  I know you did what you had to do, I know that.  I know you couldn’t see any other way -I get that.  I know that you felt so far buried beneath everything that there was no way out -I understand that.  I do.  I just don’t understand why it couldn’t have been enough -as selfish as that sounds.

I really don’t have any words this year -I have even less than I did last year.  Less answers, less ideas, less hope, and less words.

I know you think your life really didn’t matter -regardless of what you would have said -your actions have spoken louder.  You didn’t think anyone would care.  Or mind.  Or be bothered.  I don’t hold it against you.  Because as I have said many, many times -I do understand, to an extent, the rush of thoughts that swirl through your head.  To an extent.  Because I obviously don’t completely understand.

On your seventeenth birthday, while I should have been giving you crap about being out late -I am instead looking at the pair of empty shoes left by the door when times were so much better.

You may not have thought your life mattered -but it did.  It mattered a whole lot.  It may have given you relief -for that, I am grateful, but it has only deepened the pain I feel for you.  I am sorry.  I really, really am.  I am sorry that it wasn’t enough -and that you aren’t here because of that.

I hope you find some peace, kiddo.  You are missed.

Happy Birthday, Dylan.

Dylan Thomas

December 12, 1998 – July 14, 2015

Two years after unearthing the cold truth that there was something more than “Just being a teenager” wrong, eight months of constant worry and wonder, therapist and meetings, two months after an official diagnosis, seven months after his sixteenth birthday and countless hours of time spent in pain -it is over.

For him, at least.

After riding the rollercoaster and walking the tightrope of trying to find help, and wanting to believe that he was ok -it has all come to an end. An end that no one but he wanted. In a way that no one but himself wanted.

Countless well meaning people have told me numbers of well meaning things in the past. The fool proof plan of it all, the reason it is, why he was the way he was and of course, how to fix him. As if he were a broken toy that just needed new batteries. As if somehow I hadn’t thought of the glaringly obvious notion that there might be something causing him to think this way. As if.

I feel like I have been in this spot enough to know, like being here should seem familiar. Like I should have all the answers to all the questions, and should be schooled enough to know if this is ‘normal.’ But instead I am left feeling absolutely nothing.

Which is perhaps the worst feeling of them all.

Knowing that someone who has been such a major part of your life for so long -is gone, is one thing. Understanding it is a completely different ball game.

I don’t know if its ok. I don’t know if it will ever be ok. I don’t even know if that will be ok.

It may have been what he wanted, to finally put an end to the endless running inside his mind, it may have been his way of finally getting a release after all these years. But with his release comes a wave of confusion. It uproots the entire base of life, and sends you into a tailspin of trying to grasp reality, while having nothing to hold onto.

I’m sorry it wasn’t enough. That there wasn’t enough that could be done to help.

The Irony of It

They say when you are dying, or someone is dying, that your life (or theirs, I suppose) flashes through your mind.  That you have all sorts of thoughts.  On what you did, should have done, could have done, would have done.  Maybe that’s true.  I don’t remember.  All I know that is today -there are no thoughts running through my head.  No memories.  No thoughts.  There is absolutely nothing.  My mind is completely empty.  So empty, in fact, that when I attempted to talk to someone today it came out in a mad jumble of nonsense that made NO sense, and made me sound like I was irritated with the person I was talking to.

I have mentally begged to stop every step of the way.  I didn’t want to get out of bed that Saturday morning.  I didn’t want to get in the car.  Didn’t want to get on the airplane.  I didn’t want to walk the halls of the hospital.  Every door in that seemingly endless row of doors that we passed, I gained a small fraction of hope that maybe, just maybe we would keep walking.  And we wouldn’t have to stop.  We would just keep going.  But just as I started to entertain these thoughts, the nurse stopped, opened the door -and led us in.  Shattering whatever hope remained.  No matter how foolish it may have been.

As if stopping, would somehow bring this all to a screeching halt.

It’s ironic, much of it.  Ironic that six years ago I was writing that it “Was Over.”  Ironic that I honestly believed that at the time, it was over.  The we had finally found that middle ground where things would probably suck at times -but we would make it out.  Ironic because out of all of them, I really believed he was the one that would be ok.  Ironic, I supposed -that I let myself believe these things.  Blind hope, I suppose.

The one question that has been haunting me I suppose, is wondering what was missed.  Obviously I suppose it was just being blinded by the false hope that reality was ok -when really, it wasn’t.  Choosing to believe that things were ok -when they weren’t.  Holding onto hope that this life really had something worth holding onto -when really, the only thing there is to hold onto is the reality that things will never be ok.

It’s ironic, I suppose -that the one place I have fought so hard to stay away from, is the one place that seems the most inviting and the most comforting.  Ironic that I tried.  That I thought this would work.  That it would be better.

I guess the only thing that really rings true, is this time, perhaps -it really is over.

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.

Swirling

The words swirl in my head looking for a place to land. Somewhere to set up camp, somewhere to plant themselves. Somewhere they can grow. Grow into thoughts and ideas, solutions, and problems. Somewhere they can start to make sense. I brush them aside, swat them away like they are angry flies and not words that one day will hopefully form sentences that will make sense to me.

When Josh was fist diagnosed with austim I bought every book I could get my hands on. I searched the internet into the late hours. I looked for ideas, solutions and yes, even cures. I read every bit of information I could daring it to make sense…then one day, I tossed all the books into a drawer and never looked back. My reasoning was simple: No one had the answers I was looking for. There are no two cases that are the same, and since nothing was fitting -why was I going to waste my time looking for answers in a book when clearly the answers were right in front of me.

Its been a battle. A struggle. A constant fight. Trying to understand, figure out, sort, and determine everything that goes into raising a non-verbal child with autism. People often ask how I know what he wants, how I know what he needs, what he likes, what he doesn’t like, and the question has always stumped me. How would I not know? Perhaps it is the intuition that is both a curse and a reward all in one, perhaps it is the connection of being so close and living with someone for so long, or perhaps it is just that he makes his wants known. He makes his likes and dislikes clear. Whatever it is -he is a pretty easy child to understand.

I have been holding back on saying a bunch of stuff that so badly wants to come out yet stay in at the same time. I have been keeping my thoughts to myself for multiple reasons -but the main being that I don’t want something I say to hurt someone I love. One day if they are to stumble on these words -I don’t want them thinking that I thought less of them. It’s a tricky balance, because so much of their stories are not mine anymore…yet their stories intertwine with mine, making them, somehow, partially mine.

Monday, after a long weekend of empty thoughts I met with the team working together to try and make sense of a somewhat complicated 16 year old. It has been nearly seven months now -and various medications, treatments, therapy and counseling has failed. Mere days from sending him to live with his grandparents -he attempted something that raised red flags and thwarted all plans -yet again. It seemed somewhat hopeless, and quite frankly empty. Like there would never be an end to all this. Like there simply was no outcome that was going to be remotely close to what I was hoping for…

Then Monday happened.

A few words were tossed around, and a diagnosis. For the first time in seven months. While I would have liked to hear the words “He’s fine. He’s coming home. He’s decided against following through with threats that have been made the past seven months.” While I would have loved nothing more than a solid promise that the future is going to be ok -they handed me a wobbly idea of what they think is going on. A diagnosis that if treated properly, and handled correctly -I’m told can result in a somewhat normal life.

While its great to finally have a word to place on the problem and hopefully with that magic word there will be some magical way of bringing the kid I know back out again -the diagnosis day is always a bit haunting to me. Sitting across the table from well respected people hearing that once again, you aren’t going to be winning any awards for the normal family. That your life will always be haunted by diagnosis’s, medications, therapy, and hopefully -if you and the members of your house beat all odds -you might have a shot a broken future.

It wasn’t what I hoped for. It never is. The things I hope for are so much a thing of the past that I don’t even remember them clearly. I long for the word normal. Regardless of how sketchy the definition for it may be -I want some of it. I want to fight with the kids about normal things. Things like staying out too late, getting speeding tickets, and bringing home the wrong girls. I realize it sounds shallow. I realize it sounds stupid. I realize that I should be grateful that this diagnosis is not one that is terminal. At least in a short sense.

…and I will take it. I will accept it. I don’t hold anything against it. I might not understand what the words are, swirling around in my head looking for a landing spot…maybe one day I will make sense of them. But until then, I will take the diagnosis that has been applied to a seemingly innocent 16 year old child, and run with it -if it means one day, having him (the real him) back.