It all seems to be a bit much this year, for Josh. Yesterday wasn’t one of his “Best” days, and he spent a majority of his afternoon making noises and holding Simon, while looking for a corner, that was hidden with the tree that is soon to come down. Having not slept all that great last night, he was especially crabby this morning and had a complete melt down on the neighbors door step when I left him.
When I picked him up, things had apparently not gone any better. He was clearly tired, she said she tried to get him to nap – but he would have none of it. Good luck getting him to sleep anywhere other than his bed, with his blankets, and HIS things, especially if it is not HIS idea. She said he spent a majority of his time alternating between crying, and sitting on the ground screaming. Which sounded pretty typical.
I get it – his routine has been thrown off, big time. No school, no teachers, no bus. No morning hustle, no coming home to see the kids, no Madison or Dylan – period. A new baby sitter. A new routine. Plus there is the added bonus that it is snowing, and everyone is trying to bring him presents, to get him “Into the spirit” and he just isn’t buying any of it.
When we got home today, he walked all around – before melting down in the middle of the floor at the injustice of it all. I know what is causing the random bit of crankiness, but it still is frustrating. Because I want to help him, and I know I cant. I know that in a few days, he will be ok. He will adjust, and we will go through it all again when the kids come back, and the routine changes, yet again. But these few days arent going to be easy with him.
I can put up with a certain amount of whining, crying, screaming, and flat out refusal – especially since I know whats causing it, but what that certain amount is gone, its gone…and there is no bringing it back.
I feel bad for him, I know hes struggling, I know hes confused and frustrated, and I don’t like watching him this way. I don’t like watching him run around like a lost puppy…but at this point, there isn’t really anything I can do – which perhaps just makes it all the more difficult.
I know its Christmas, I know its “The season” (even though I still havent figured that one out) but it just doesn’t seem like it is…infact, I think I might almost be ready for Thanksgiving, but then again…maybe its just me.
Filed under: Autism, Good for nothing thoughts | Tags: Josh, Looking for answers, My thoughts
I had an appointment, if you will, with Joshs teachers scheduled for Monday, but in typical fashion I forgot all about it, until later that night. So I took him into school the next day, got a lecture for not putting him on the bus, and a new appointment for today.
And today, I forgot about it, up until I had 10 minutes to rush in and beat the clock…and then I casually strutted in as if I had totally planned my day as to NOT forget such an important appointment. I met Josh at the door, and we followed his teacher down the hall into a smaller office.
A room I have spent much time in. Listening, hearing, and trying to add my small input, before getting the lecture that we have all heard, and sent on my way. The dreaded room. Every time I enter it, I feel like Im in grade school again, getting a lecture by the principal. Shes been wanting to talk to me about Josh, because he just isn’t “Getting it” and shes worried about him.
Truthfully, Id like to meet one person who honestly is worried about the kids – because it seems more often than not, people want to talk to me to see if there really is something more than meets the eye. Every time I hear the words “We really do care” I cringe. Because I know they don’t. They are trained to say that, know that parents want to hear that, to know that the place their kids spend the majority of their lives, the people really do care about them. But how is it possible to give the care that a kid really needs, when, while you have them all season long, you have hundreds of other numbers, I mean kids, to tend to?
This afternoon, his teacher told me the original. That she cared about Josh, that she wanted to see him grow, and succeed, and that she wanted his best. Then she went on to say that Josh just isn’t getting it like the rest of the kids. I could have jumped her right then, but I stayed calm, and heard her out, knowing that while she might not exactly care about Josh the way I would hope someone would, she isn’t trying to flat out insult me by saying something completely off the wall like that.
She said that while he has shown great improvements in that he appears to be focused on what they are doing, he doesn’t show that hes learning. While most of the kids in that class have already shown some sort of interest in learning to write, and form letters…Josh simply stares like he has absolutely no idea what they are doing. I already knew that, hes never been a big fan of crayons, or pencils. Never been one to draw or color. She said that hes five years old, and that while she isn’t his therapist, she thinks I should pursue different options for Josh.
I didn’t know there WERE other options, hes already maxing out all the options I thought we had for him. Hes been to regular preschool and attempted regular kindergarten. Hes done a few courses in special needs preschool, and is now in a special needs kindergarten. Where else could we stick him? He goes to therapy once a week, and has some in class therapy as well. The only other options I could think of, were the ones I didn’t want to talk about…and so I thanked her for her time, left before she was done, and walked Josh out to the car wondering where to go with him from there.
So what, the kids got problems that no one knows how to deal with.
I guess this just means we should all give up on him.
Please note the heavy use of sarcasm in that sentence.
After putting him in the car, and thinking things over for a few minutes, I headed in to talk with his therapist instead of going home, where I was originally planning on going. I need to know something. Something that no one will tell me, I need a straight answer, I want to hear it, I need to know. What is the best option for Josh. What option is the best to give him the help he needs to succeed. What is, best for Josh?
His therapist was the first one to step up and take Josh’s case on, way back when there was considered no help, he pulled strings, jumped other hoops, and worked inside tricks to get Josh into some help that he thought would do him good, and thanks to him, Josh HAS made progress. He will tell it like it is, and more than once, his opinion has proven to be true. Hes someone that while everyone else has given up hope, holds out that there is hope, if there really is. He is also the first to put the brakes on when things arent going well. I knew asking him the question would come with loaded answers, but I need them. I NEED to know.
We waited a while because we had dropped in without an appointment, but he took us in and listened as I laid it all out.
He was quiet a few minutes, watching Josh.
He didn’t give me the answers I was looking for, and more or less told me that I should already know the answers to what I was asking. But he did confirm that Josh is and has been, and was, and will continue to, make progress. He made reference to the first time he saw Josh. Back in the days when he would flip himself around on the ground like a dead fish, slamming into walls, and beating his head. Compared with who he is today, Josh has changed. Hes grown. He really has made some great progress.
I watch him at home, and see how much he has changed. The way he interacts with the kids. The way he smiles and laughs. The simple things that seem so simple, are things that make our day. The fact that he is facing his fears, overcoming these challenges, and learning to do things that he couldn’t or wouldn’t do before, tells me that he does have it in him. It reminds me that it will be done, when he wants, and not a minute sooner.
I know Josh knows how to do what they are asking him to do, because that’s how he is. He understands what they are saying to him. He knows that they really really really want him to draw a circle. But he wont. Because he doesn’t want to. I know he can, because I have seen him do it before. Once. Maybe twice. But he can. Im not worried (that much) that he wont draw, or write, or learn how to spell his name, or read a book. Im not worried (that much) that he doesn’t talk, or use the bathroom ALL the time, Im not even worried (that much) that he will slip further and further behind. What worries me the most is that people who are suppose to be helping him, will give up too soon, and let all of his potential slide. What worries me the most is that they will see him for who he wants them to see him as, and not who he really is.
What worries me is what they see, and not who he is.
I wish more people would take the time to look beyond what he shows, and into who he is, because something tells me that he would show them more, if they just knew where to look.
Every day this week, I have sat down to write this same post, and have come up with nothing. It seems my thoughts are intact, until I sit down in front of the computer, and am faced with the white screen staring back at me. Which is where I wait, somehow, anticipating the thoughts to magically appear. But that obviously hasn’t happened. I get distracted, sidetracked, or hauled off to bigger and brighter.
What I wanted to talk about was Josh, and his diagnosis. What I wanted to say was that he is more than what he has been diagnosed with, but what I got was an empty mind, with no thoughts whatsoever until I left the computer.
When I did have said thoughts intact, I began feeling guilty, over the fact that so much emphasis has been placed on Josh lately. Every post has some form of Josh strewn around in it. Some rant, question, or frustration that has come out of trying to understand this kid. In a sense, I wondered if I was somehow pushing the older two out. Not only here, in writing, but in life as well. All those thoughts began coming back, and I heard numerous people telling me over and over again that accepting responsibility of Josh would only compromise what little hope the older two had at a successful future. Am I somehow not offering them the best, by assuming responsibility for Josh as well?
Its not like just recently, since getting a diagnosis on Josh, have people started questioning. There has always been something. Someone. Somehow. Some problem, that has kept people from laying off my case about the well being of the kids.
This week, I was thinking about Josh, in the context of somehow “Ruining” Madison & Dylans future. I watched him differently, as if somehow in the blink of an eye, he would have hold of their futures, and have them ripped to shreds. Was it possible? I looked at him through a different perspective, the outsiders perspective. Trying to see what they saw, if anything, in him. What harm did they see? Was it something I didn’t? I looked at him as more than my nephew, more than a little boy who I love the same as the rest of them, I looked at him as a possible threat. The way, it appears everyone else sees him as.
The thing is, Josh is more than “Autistic” he has more than “Autism.” He has potential, a personality, an identity. He has a future, he has hopes and dreams. He has ideas. He is a human, a boy. He is growing and changing. He is a smarty pants, who often lands himself in situations he really shouldn’t be in. He is Josh. He has a name. Hes a nephew, a son, a cousin. He is smart and funny, stubborn, and shy. He is more than what you see, and goes way beyond the surface level.
But the sad part is, not many choose to look beyond the label, beyond the box he has been placed in. They don’t look past the surface, and instead…get hung up on the one word “Autism.” They back away, as if it is somehow contagious, they stare confused as if it somehow is a complex matter that on a genius could understand. They don’t see him for who he is. They don’t see the Josh…and that, is sad.
Im not trying to say that he doesn’t have issues, he does. Many of them. What Im trying to say, is that he has enough issues, without having to worry about the way people view him, about being ashamed because he stuggles with a problem that other people don’t.
I think its sad, however, that more people cant seem to look past the box that they so badly want to put people in. I think its sad that they cant see past his label, and into the real person…I think its sad, but they are the ones that will be missing out.
Years ago, before Autism was even thought up of in our lives, someone told me that I shouldn’t take on the kids, that if they were to live with me, I would somehow compromise THEIR lives. Their futures. That I would somehow damper their potential. And there for a while, I believed them. I knew (and know) I cant give them the best, or the biggest. I know that I cant offer them name brands, and the most expensive. But what I find odd, is that now. Its not me who is ruining their futures. Its Josh.
A five year old little boy, who wants nothing more than to spend the next 10 minutes with his hero’s…and after that, he doesn’t care what happens.
A boy – who loves to scream, make noise, and drag his bear around. A boy who loves animals, cold peas, and books but hates water, new places, and most people. A boy who can make just about anyone laugh or embarrass the heck out of them, who attends school, is learning to interact with other people and happens to have autism.
His name? Is Josh.
His diagnosis? Autism
His personality, attitude, etc? Limitless
This morning I read a very thought provoking post over at Joys autism blog, where she mentioned that autism was something she was thankful for. It inspired some thoughts of my own, that sort of took off.
I am often guilty of swinging back and forth on my thoughts about autism. I often get upset that Josh has autism, knowing who he was before, and knowing the things he now struggles with. But then I get to thinking that he is who he is and that I should be accepting, and I am. I really am. Despite my latest rants on how much I hate him to have to struggle.
Is it possible to be thankful for something that causes Josh to struggle with so many different things?
A few weeks ago I wrote about a conversation I had with a man who said that when he feels down, he likes to look at special need peoples lives and think “Atleast I don’t have their problems” and then continues to feel good about himself. The mere thought of that makes me sick. Not just because you are making yourself feel good at another persons expense, but because often times special need people are looked at as enjoying life less, because of a certain disability. When in reality, they are most often happier than we as “Normal” people are
The word normal, is so misused, not only by myself but from others as well. What defines normal? What IS normal, why is normal so important? Why do we (or I) feel the need to be this alleged “Normal?”
Since getting Josh back, there have been a number of things that I have learned, and been taught. I like to think I have a different outlook on things now, but I don’t know how much of that would be true. I still find myself worried about what other people might think, not so much about us, but about Josh. I want him to fit in, and not have to worry, but on the other hand, I want him to be who he is, and if this is who he is, then that is ok.
Ive often wondered where the line is. How far is too far. Is getting him therapy, wrong? Is it somehow saying I don’t accept him, and he needs help? Help, for what? To “Fit in?” Why then, have I spent the majority of the year telling Madison that its ok NOT to fit in. That she doesn’t have to “Blend in” with the rest of the kids, and act just like them? Whats different about Josh?
I want him to grow up. I want him to be happy, healthy, and all that other stuff that factors into a somewhat “Normal” childhood. But why “Normal?” What do I see in “Normal” that I want for Josh? For Madison or Dylan for that matter?
Which brings me back to that word, the word that I misuse, and overuse. Normal.
Years ago, way back when, is that what I consider to be normal? When Emmy passed away, everyone told me that I would eventually return to being “Normal” but what struck me as odd, every time I was told that was the fact that I was being told I was somehow…NOT normal. That somehow, loosing my daughter turned me into a not normal, person. I was told that eventually I would find a NEW “Normal” which is something that has taken me years to understand. I don’t want to go into all the details now, but what Im trying to say is that everyone has their own definitions of being normal, and what normal is.
I can look back through my life and find different times when I honestly thought I was normal, where other times I would yell “WHY CANT I BE NORMAL.” What strikes me as odd now, is that I still wonder the same things. At certain times in my life, I think “Finally, Im normal” and at other times I wonder “Why cant we just be normal.” I guess to me, normal is a life without so many ups or downs. Which, who, really, has that?
I do accept Josh, and I don’t want him to change, just because he doesn’t fit in. I don’t want him to change because someone else wants him to. I don’t want him to think something is wrong with him, because nothing is. I want him to go, as far as he can go and not any further. Just like with Madison, or Dylan, I want him to succeed. But I don’t want him, or them, to ever be pressured into being someone that they arent.
Josh has a lot to learn, a long ways to go. But you know what? So do I.
I didn’t fight this long to get Josh back, just to try and change him into who he isn’t. I fought this long to get him back, so he could be who he is, without having to worry, or wonder…and while a lot of the time, Im guilty of swinging back and forth, wanting him to be this or that…I hope that he grows up to be who he is, and not who I, or anyone else, want him to be.
Is it possible to be thankful for a kid who finds happiness out of the small simple things? Who enjoys life, who is (mostly) happy, healthy, and growing by leaps and bounds?
…so yes, as the month slowly approaches thanksgiving, I hope I can honestly say without a doubt that I am thankful for Josh (and Madison and Dylan too!) and autism.
“But why….”
“I don’t know why”
“Why not…”
“Because I don’t know…”
“How come…”
“I. DON’T. KNOW. And if you ask that one more time…”
“Why…”
Sometimes I feel like the one asking the questions, especially when it comes to Josh, and autism, and all of this other issues that I cant even keep track of.
I never claimed to understand everything, especially not everything about autism. I don’t know if vaccines cause autism, I don’t know what the difference really is between certain types of autism, I don’t understand as much as I honestly should. Even though days after getting the diagnosis I bought every damn book recommended to me. I didn’t understand anything more after reading those books, and infact, was just more confused. Special diets. Vaccines. The wrong look. It seemed everything was pointed out as a factor for autism…what I was looking for wasn’t there. I wanted a black and white answer. A finger pointing THAT way, that said “Yes, this is a tried and true cure and cause for autism.” But I found none of that. Infact, I found nothing. Just a pile of books, a handful of unwilling therapist, and a kid who acted like acid was being poured on him every time it came to taking baths.
Of course, there were and are other factors. Such as the possible abuse that occurred at his dads. The PTSD the rest of the labels that I cant even keep track of, that constantly seemed to be changing. While I wanted black and white, cut and dry, I also wanted answers. I wanted to know why, how, when, where, what. I needed to know how to help him, when to help him. But at the same time, I wanted him to grow just like any other child. I didn’t want to give him a crutch to help him through life, didn’t want to disable him in the areas he was capable. I wanted clear lines drawn, not invisible lines that it seemed I was constantly tripping over daily.
Its been a few months since those initial diagnosis’s were made. During these past few months we have covered large areas of ground, perhaps too quickly. Perhaps the state was too eager to get his case out of the system, or I was too busy looking for answers that simply didn’t exist. Maybe we were all focused on the wrong things, money, therapist, help, options, etc. Instead of focusing in on what and who really mattered: Josh.
I don’t honestly know…but I sure wish I did.
Sometimes I just want to sit down and ask: Why. Why not. How come. Why.
Sometimes I want to know. Dammit. I want answers. I want a reason. I want a clear, cut and dry yes or no. I don’t care how far out there it is, as long as it is concrete. Proven to be. And most of all, true.
I wish it were simple. Or atleast, not this complex. Maybe it is, maybe its just me, making it more difficult than it really needs to be.
I find myself getting frustrated lately. Its like I am constantly running into a brick wall. Like no matter what way I turn, there is a road block. Not just a stop sign, but a brick wall.
I know that Josh has made progress, but I don’t want him to have MADE, I want him to be MAKING. I want him to be “Caught up.” I want him to be, normal, sometimes. Can I say that? Can I say that I wish he didn’t struggle with the things he did? Can I say that I wish he didn’t NEED therapy to help with something that shouldn’t have happened? Can I say that I want him to live a normal life? Is it wrong? Because I get the feeling that it is. That Im not accepting him for who he is. That because I don’t want to accept the damage that has been done to him, that Im not accepting Josh, the way I wish others would.
My biggest fear, and yes, I realize this has changed weekly, is that Josh will grow up thinking that somehow, I havent accepted him. That he will spend his whole life trying to somehow win my acceptance. I know, I could argue why would he care what I think? But the more I think that, the more I realize he looks up to the people closest to him, he strives to please those he knows care about him, and he struggles to fit in.
Hes only five.
When is enough, enough for one child?
As if loosing his mom before he was even old enough to know what the word meant, wasn’t bad enough. His life has been uprooted so many times, that I wouldn’t be surprised if that is part of his problems, He didn’t have the stability he needed when he was really little, his dad abused him, and he has autism…and so much more…
When, is enough, enough?
When does a regular childhood fit into the equation? When does growing up happen? When does living that carefree life fall into place? When does going to the park become fun, not stressful, terrifying, and earth shattering? When does attending preschool become FUN?
I realize, Im all over the place tonight. I don’t make much sense. Im not trying to. I just, sometimes, wish I had answers. Answers. To questions that I wish I didn’t have to be asking. For a kid who deserves more than what hes been given. Im not asking for him NOT to have autism, Im just asking when is enough, enough? When will he get answers to questions he doesn’t even know to ask? When will it be enough, when will I stop asking questions that I have no business asking, putting more pressure on him, asking him to change, and be someone, or something he isn’t…and just accept that things are the way they are…and that it really is ok.
The other day I got into a sort of heated argument with someone I know. It wasn’t really heated, it was just, over expressed, I suppose. She was saying that I will never experience the “Normal” things in life, because of Josh. That there is always going to be a “Tint” on my “Window” because of him. It rubbed me wrong, as she continued to say that I would never see him accomplish “Normal things” because “Lets face it, he isn’t normal…hes living a tinted life” She went on to say that most people say there is a tinted view of the world, but the only “Tint” out there are “Kids…like him”
I bit my tongue harder than usual, opened my mouth, then clamped it right down again. Because there is nothing I could say to her that would truly express how I honestly felt at that given moment: Like someone had just shown me the world, and ripped it out from under me. Like my kid was strapped to a rail road track, a train coming, and there was nothing I could do. Like I was beating my kid, repeatedly…with no knowledge of how to stop. It hurt in so many different ways, that I really wanted to give her back a piece of what she had said.
But I held back, and simply walked away…while thinking of everything she had said.
Which is when it hit me. That she was right. My view of the world, my view out that little window of the world WILL always be tinted…but you know what? I kind of like it that way. I see things differently, thanks to Josh, thanks to the kids, thanks to everything that I have seen and been through. I no longer see the world as a bed of rose petals. I see it for how it is, in my opinion, and I get an extra special view of it…thanks to Josh.
Everyone I know, has changed my view of the world in some way or another. Emmy gave me the first real glimpse into a world with more smiles. Molly taught me that happiness can be found in the simplest things…and so forth.
I see things differently than I did a year ago. Differently than I did two years ago, or four. Everyone has one…a “tinted window“. Most just don’t use it. Much preferring to look out the standard window that everyone else is looking out of. Because its popular. Its in. Its “Better”.
Thanks to Josh, I see things entirely different that I did a year ago. I see accomplishments and progress where others see nothing. I see extraordinary, where others see ordinary. I see complicated where others see simple. I see disaster where others see fun.
I also find the small things, to be major. I see the work and effort, and struggles he goes through daily, just to get out of bed, get dressed, and get shoved out the door into a world that he puts so much effort into understanding, when they give so little back. I see the troubles he has, and the hard time he has when faced with something that most people would consider to be fun and games. I see the pure frustration and overwhelming look he has when hes reached his limit. The limit that most people wouldn’t even know existed, because they are just “Getting started” at that point. I see how hard he tries, and how hard he REALLY wants to, but cant…and I know just how frustrated he is, because I want it for him…but cant give it to him.
But then there are days, when he accomplishes something. Something small, and something that most people wouldn’t even think twice about, but something that we deem celebrate worthy. Something like going into a store, and going out of a store, with no screaming, crying, head banging, or accidents. Something like attending a therapy appointment where there was no blood shed. Think of something totally off the wall, and completely unrelated to anything, and most likely, it will happen when we got to town. Things that people don’t even think of, are things that we deal with daily…are things that Josh struggles with, and are things that hes slowly, overcoming, and were more than thrilled to be there…looking through our tinted window, as our “Tinted boy” makes his way into the “Un-tinted” world…where he just wont fit in.
Monday Josh went to kindergarten, Tuesday he got sick (at school) and the rest of the week, has been spent at home. Today was technically his second full day of kindergarten.
The second day where he took all of his struggles, and frustrations, and complications to a school that doesn’t understand anything about him, and attempts to fit in. Which is where I left him: kicking and screaming. To learn something he already knows, but doesn’t quite fully believe. That I will come back. Because that’s how it is with Josh. You have to do things a few hundred times before he finally understands…and that’s ok. Its who he is. But not everyone understands this, because today when I picked him up, tear streaked and red eyed, I asked his teachers how his day was: Rough. Complicated. Hard. Were the words they picked out. Shortly after I left, he went into a full blown fit, where he started screaming and crying…and eventually hitting (??). They put him in time out which is when he landed on the floor, scaring ½ the teachers and kids there.
No one would understand why I asked the questions I did. No one will fully understand why I smiled and did a little jig inside because he “Spent a few minutes interacting with the other kids”. No one will understand why I was so thrilled to hear that there was no blood shed, and that he DID drag his bear around. Because these are just small steps, small unimportant little things that mean nothing to anyone else…except those who are looking out this tinted window with me.
Much like his preschool graduation, I was giddy over hearing the simple things. The things that mean the most to me, are the things that arent even aloud to be on the charts because they simply don’t matter…
Those things are significant. Those things mean a lot. Those things are the important things in life.
Much like first steps are considered a “Mile stone“…HEARING that Josh interacted with kids his own age, if even for a few minutes, told me that hes making progress. Hes adapting. Hes going to be ok. Even if he spent the entire time in tears, screaming and crying. I don’t expect change over night. But the small things, the little things, the “Unimportant things“…make me smile, and honestly make me glad that I have this view, out this “Tinted window“.
I think it goes without saying, but its worth repeating. I am proud of him. Of who he is, and who he is becoming. Some days are rough, I admit. Other days are torturous, and many days this week have left me with my hands in the air, giving up…because I just dont know when I will reach that limit with him. But when it comes down to it, I really am proud of who he is.
Filed under: Autism, Letting it out, The kiddos | Tags: Autism, Josh, Looking for answers
My biggest fear is that come tomorrow, I will drop Josh off and he wont cooperate. That he will ONLY show them the side of him that comes out when he is forced into situations like such, and that they will write him off the books completely, or tell me that again, there is no hope. My biggest fear is that he will be “Labeled” and not actually diagnosed. That he will be stuck with a label, in a box, for the rest of his life, with no chance to grow, or change, or reach his full potential. My fear is that no one will accept him for who HE is, and not what has been stuck to him, or what hes giving off as being him. My fear is that once someone gives him this label, that it wont be able to come off, and that like it or not that’s who he is. No more Josh. No more JJ or little J. Instead he will be known as “That kid” “The one with problems” “Autism” and other such things. My fear is that…
…and I could go on forever.
Listing fears, and trying to console myself with the thoughts that tomorrow really might not be all that bad, after all, weve done this for whats seems like forever. Its just another routine evaluation. Another step. Another therapist. Its nothing THAT unusual, infact, it seems almost, if I dare say, normal. Normal. To drag him in screaming and crying, to leave him and actually walk away from the door that is screaming bloody murder. Normal to pack up a four year old boy who hasn’t taken a bath for a few days, and wont put his shoes on because of some unknown fear, and haul him down to an appointment with a therapist who will peel him off of me so I can slip away, and listen as the crying turns into full blown wails, and quiet whispers of comfort are drowned out by the screaming from a purely terrified child who doesn’t understand that this. This right here, is for his own good. Because if that’s normal, I wonder what. Just what this world has come to.
Tomorrow at 2pm I take Josh in, drop him off, stop by the bank and come home like nothing has happened. But we all know that wont happen. Tomorrow I will take Josh in, and after spending 10 minutes or so of their precious time trying to talk the clam off of my legs, they will break him away and watch as he turns into a wild man, thrashing around, screaming and kicking. I will slip out the door, close it behind me, and listen as he screams, the only thing he knows how to do. I will walk away, and wonder just what kind of a person I am, to leave him in there like that. I will most likely hang outside for a few minutes, stalking the parking lot, and maybe even wander the halls. Kicking myself. Racking my mind. Looking for answers in the outdated magazines. Drinking coffee, and smoking like a chimney. Because I don’t roll like the other parents, and Josh isn’t like the other kids, and I cant just walk away while he screams behind that door.
I tell myself its for his good. That he needs to be seen by these people, that they need the one-on-one time with him, and him alone, without anyone else there. Ive told myself that he will survive, and after its all done, maybe we can watch the dump trucks. I tell myself he will be ok, and eventually we will get this under control. Control. The one word people seem to love these days. One day. I will have some of it too. One day I will be able to walk him in, and he will leave, willingly, and maybe then I will wonder just what I did to raise him to not even say good-bye. I tell myself its not worth stressing out over, that tomorrow will come. Tomorrow will go. That maybe he will cooperate, and they will see his smart, funny, side. The side that I know wont come out around complete strangers, but maybe, just maybe, he will show them hes not worth “Condemning”, atleast not all the way.
Someone said the other night, that I shouldn’t worry about this. This is so small on the whole scale of things, that if Im this worried about this…then maybe Im not right for this “Job”. To be honest, I never said I was right for it. I never thought I was good at it, or could actually do it. But I do worry…and I will worry. Because that’s how I am. I don’t like to see him like that, and I know that’s how hes going to be. I don’t like to force him into situations that are hard for him, but I know this is what he needs. I know it will be hard for him, and I know it will push him over the edge in more than one way, but I keep trying to convince myself that if he goes over the edge, then maybe, just maybe, they will be able to help him. Maybe, somehow, they will find it in themselves to help him, and not send him back out the same door he came in. Because that’s what he needs. That’s why Im doing it. That’s why hes going to go tomorrow, no matter how hard it may or may not be…and that’s why I worry. Because hes just that important, and I cant stop myself from wondering, and worrying, if this really is…the best for him.
It’s a small appointment. One that most people would go to, and not even look back. But its going to be hard, hard for him. Because hes going to have to face his fears, hes going to be pushed over the edge and tried in every single way, to push any button he has…because that might be what he needs.
I can just hope that one day, this will all be behind us.
Filed under: Autism, Letting it out, The kiddos | Tags: Autism, Josh, Looking for answers, My thoughts
After telling my mom about Josh, a decision I later regretted, I began to wonder if I even dared to tell other people about him. Wouldn’t it be easier to just say I didn’t know? After all, I really DON’T know. I don’t understand the in-depth, complex parts of autism, let alone how they effect him beyond what meets the eye. It wouldn’t be exactly lying, and eventually, maybe I could tell a few people, take it one at a time sort of thing. See how they react, and move on from there. I wondered if it would be possible to take Josh, and hide him away, just until help was found and he was able to go into a store without disrupting peace for all who ventured out the same time as we.
I started entertaining the thoughts of boxing Josh up, setting him on a shelf and leaving him there until the world around him came to a deep understanding of what its like to have a child with autism, and fears so great it keeps them from sleeping at night or using the bathroom. I wondered if I could somehow just protect him, make up for lost times, and keep him away from all the unintentional, hurtful words that can and have been directed at him…because even though he doesn’t talk, and he doesn’t say whats going on inside of his mind…he understands. He knows enough to understand. He isn’t stupid.
Over this past week, one of the things that has become obvious to me is that somehow people think that in the hour it took for one of the many therapist / doctors to inform me of what was “Up” with him, I was also informed of all the ups, downs, and in-betweens of autism. That somehow, now, I know more than I did before. That because he now has a diagnosis, I KNOW the things that I didn’t before, and I completely understand the things that made absolutely no sense to me before last week. This, however, is not the case. The only thing it has done is opened up more doors for Josh to get help, and realistically, that should be all that matters.
I said that last week, I piled all the books, papers, and research I had done on or about autism, into a corner and left them there. Which is where they still sit to this day. I don’t want to know any more. I don’t want to hear what a book has to say and that there is a percentage of kids who grow up to live “Normal” lives. I don’t want “Normal” for Josh. I just want him to be who he is, to be able to live his life to its fullest, without having to pay hell from everyone he meets. I don’t want that. But I don’t know how to stop it, and I don’t know if I can.
I know I cant keep everything away from him, and sooner or later he will come face to face with a confrontation of his own, and I can only hope that when that day comes, hes able to stand up for himself.
A few people Ive told took the information, looked deep inside of their minds as if trying to find that glimmer of hope and told me that their cousins brother in laws ex wife had a great nephew who also was “Like that”. Others, like my mom, said that it was a “Made up theory” to give parents a label, and something to blame for their bad parenting, while others simply wondered if it could possibly be that he was just an “Unruly child”.
When I told Madison and Dylan what the doctor had said, they were quiet a few minutes. Madison broke the silence by asking if he was going to die, and when I told her that no, this wasn’t a terminal illness like so many times before…she sighed relief and wondered then, what it was we had to be worried about. It was both a heart breaking and heart warming moment. Because at the same time there was absolutely nothing to worry about in her mind, there was the greatest fear that most likely will always be present.
Ive been told that I need to get a routine. Make some order, and stick to it…and while I know all these things are true, I have to ask how…and when. Because it always seems just when we get things figured out, straightened up, and down to a system, something else pops up, and were back to where we started. “Don’t let him rule the house” “Your taking the easy way out” “It doesn’t HAVE to be that way” are all pieces of well intended advice from numerous people this week…and while I appreciate it all, I have to ask the question “Then how IS it suppose to be?” I realize this isnt how it shouldnt be, but how…how should it be, because I dont know anymore.
…and while I know that a majority of his “problems” can be autism related, there are still other things, things that Ive been told he will eventually “Out grow” or “Over come as he matures” that I cant help but kick myself over…
There arent too many reasons why a four year old would be scared stiff of going into a bathroom. Not too many reasons why he would protest taking a bath, and scream like there is no tomorrow if he is forced into a situation where there is water involved. There arent too many reasons why some nights he simply cant sleep, and instead stays up all night screaming, and crying…and it isn’t because he needs “Structure” or “Discipline” he doesn’t need to learn how to “Self sooth” or any of those other things that people have told me is “All he needs”. Hes scared. Its obvious. I know why. But I don’t know if I will ever get over the fact that while he was in those situations, I was at home, telling myself that “He was better off there”. Believing that I was doing him good by letting him be there…where he belonged.
Josh may “Get over it” he may “Out grow it” he might? Even grow up to lead a somewhat “Normal” life. But I don’t think I will ever “Get over it” and I know I certainly wont “Out grow it”. Every night I sit up with him, watching him fight sleep, and wake up screaming…every time he freezes up, and starts to cry over something as simple as a bath, Im reminded of the mistakes Ive made with him…the things Ive done…and the things I havent…and I have to ask myself…am I really doing whats best for him now? Have I really changed all that much, or am I just pushing him further and further over the edge…
Ive been given another chance with him, am I screwing that up too?
This weekend I had to call my mom. To risk sounding like a spoiled brat, its not that I didn’t want to, its just that it seems more like a duty, or a chore rahter than something I actually look forward to. But Ive learned the hard way that if I don’t call her once a week, she shows up on the door step wondering whats up. Its easier to place the call, and get it over with, so this weekend, I bit the bullet, and called. While the kids sat a few feet away eating lunch I filled her in on the past week of life, what the kids were up to and tried to steer away from subjects I didn’t want to discuss with her. Like Josh, and his “Diagnosis” and all that fun stuff. Infact, I pretty much tried to keep Josh out of the conversation.
It wasn’t until I was about ready to go did she ask “What ever happened with Josh?” as if I had just dumped him off somewhere and forgot about him. I assured her he was fine, and watched as he threw most of his lunch at birds, people and passing cars…screaming every once and a while. I didn’t want to go into details with her, because honestly, I just didn’t want to talk with her, about that, right then. But she was going there, and before I had time to tell her I really needed to go, she was already diving head first into what was soon, another one way conversation.
She gave me her thoughts, opinions, advice, and so forth on “Difficult children” such as Josh, telling me that she knew all about difficult kids. After all, she did walk out when her kids were young, she SHOULD know. Not her words, exactly. But still. She went off on her rant about doctors, making money, and the traps that they lay for people with young kids, hooking them and bringing them in with their childs life on the line. I listened, and waited, knowing what was coming…and then she asked. “Did you ever get the results of his test back?” as if I had taken him in for a series of medical test…if only…IF ONLY it were that simple.
I waited a few seconds not sure how to respond, and then told her about the appointment. The doctors…and eventually, the final “Diagnosis”. She was mostly quiet, and listened for majority of the time, until I left a gap, and she filled it “Well, you don’t actually believe that, now do you?”. Throwing any chances of actually wanting to believe myself on this one, out the window quickly replacing it with doubt, and second guessing, wonder and guilt.
She spent the next 20 minutes giving me a debriefing on autism…telling me about the “Scam” and “Money making” scheme that doctors have come up with to prey on “Difficult Children” by placing an “Official label” on them, to give the parents – who are more than willing to do anything – some way to spend more money and feel good about it. When I didn’t say anything, she took my silence as agreement, and began giving me a speech to tell the doctors next time I met with them. It was about that time the spit started to fly and she really worked herself up. I told her I had to go, hung up and stood there a few minutes while my head spun so fast I couldn’t even think or see straight.
Its not that I really expected her to be supportive, its not that I was even looking for “Support”. I could really, care less if she thinks that autism is a scam, or hoax. I don’t care if she has opinions, or ideas, or any of that…infact, Im all for it. But what I didn’t expect is for her to take off on a rant, and leave me completely defeated. As if somehow I had made the choice myself to introduce autism to Josh…and Josh to autism. Maybe I had fallen into a trap, or something, and maybe I was giving Josh over to the doctors to “Crucify”. Maybe…
I don’t know.
I wont say I have completely given up, because I always tell the kids not to give up and I don’t want them to think that when things get hard, you can just…give up. But I will say a part of me gave up this weekend. I piled all the books and papers and research and confusing words I had tried to understand, into in a box and shoved it in the corner. I intended to talk to Joshs therapist this afternoon about getting him into some different therapy, and canceling some of his other “Unneeded” appointments. I had intended on setting up a time to talk with someone about where to go from here and getting some help to sort through things because I really don’t understand any of it…
But I didn’t.
Because I just don’t know now.
Im back to square one. Back to second guessing, wondering, and left answerless. Only this time, Im not exactly…looking for answers.
Ive given up dreams before. Ive given up the idea of ever living a day that wouldn’t be filled with state workers, and surprise visitors. Ive given up ever trying to turn this page and start a new chapter…so why cant I get over this? Why cant I just accept the fact that this is how it is, and no amount of trying to change things is never going to amount to anything. Why cant I just learn that this is how Josh is, and no amount of therapist, or doctors, or money, or…whatever, will ever change it.
Is it really just me who can accept this? Is it really just me that thinks there MIGHT BE HOPE out there? Is it really just me who is playing into this “Sick game”?
Its like Im wishing for something…something that just isnt there.
