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
Filed under: People
My mom is coming up, with really short notice. After initially freaking me out a few days ago, she changed her tickets, and will now be arriving on Monday.
Someone asked me if I was “Ok with that.” A question I didn’t answer. Because I have to be, because its happening, and if Im not ok, well then…yea.
So Monday my mom will show up.
And spend what she calls some “Much needed” time. Although, I prefer to think of it as, time. Wasted time.
Among other things, this means I have to clean, and stuff, and hide, and run, and scream, and well, all that other good stuff that comes along with having an unexpected visitor who you really wish would remain just that.
Until then…
Filed under: Good for nothing thoughts, People | Tags: Looking for answers
…or maybe I dont.
I don’t know why, but I always feel the need to be constantly apologizing.
This afternoon I called my mom again, and walked away wondering, once again, why…
Seriously. Why.
Why do I bother, every weekend, to go down, and fork out over $3 in quarters, while the kids sit in the car trying not to kill each other, while she informs me, of once again, how little I know…and I spent the majority of my time…apologizing. Over and over. For not knowing, or understanding. For not doing better, or being a better person. For not calling more, or talking more.
…and then I leave, and spent the rest of the week trying to pick myself up, before calling her again.
Im not trying to bash her, or talk bad about her behind her back. No. Im just trying to understand, and figure out just how much of what she says every week, is true.
Im not claiming to know everything, or be on top of things the way I should. I don’t mean to say that I have this all figured out. I don’t even mean to give the impression that I am doing a good job.
I think sometimes, I give the wrong impression, don’t ask me how. I don’t know. Maybe it’s the one thing Im good at, giving the impression that I am actually good at this. Im not sure. But people seem to be constantly reminding me that Im not. As if I don’t, somehow, already know.
Im trying, but Im flying by the seat of my pants, trying to figure things out, making spur of the moment decisions that come back to bite me later on. I try to figure things out, but I spent a majority of my time fixing mistakes, and patching things up…just long enough. I don’t know where she got the idea that I thought I knew what I was doing. Don’t know where she came up with the idea that she had to remind me, weekly. I already know. I already, know.
I know…
When Madison comes home in tears because someone said something mean, and I don’t know what to say except boil inside about the cruelty of kids who really don’t understand. I know.
When Dylans grades go up and down faster than the stock market. I know.
When I “Forget” to run Josh through his flash cards, and am in too big of a hurry to get him dressed in the morning, to actually give him the chance to learn. I know.
When I lay awake at night, wondering how to make the best of our time, what things to cut out, and how to save just THATMUCHMORE. I know.
When I look at the pictures of things I had, and no longer do. I know.
When I see other people. I know.
When people stare, and point, and try to make subtle comments to tell me that Im messing everything up. I already know.
When I finally attend a meeting with a teacher, and am told that I need to work on things better, starting with coming the first time Im told, not the third or fourth attempt…I know. I know. I know.
I already know.
When I have to decide if leaving the kids at night, or not being there when they get off the school. I know.
When people tell me, and I pretend I havent heard that before, just incase there is something I havent heard yet…I know.
When people point out the obvious, and state the simple. Over and over and over. I know.
I already KNOW.
I know I need to do better, work harder, try longer, give more. I KNOW. I do know.
If I appear that I don’t, its just because I don’t know what to say, or I think that maybe you will say it a different way, and I will be able to get some useful information.
But the truth is, I do know.
I know. Im sorry, and I will try harder.
Filed under: Good for nothing thoughts, People | Tags: disconnected & random, My thoughts
Im trying to write something, but find myself getting tied up in knots every time I try.
Yesterday I found myself in the midst of a conversation that left me wondering just what this world has come to. I found myself talking to someone who talked to me as if I were a long lost friend of theirs, who they hadn’t heard from in years. Which I am not. During the conversation, he mentioned that when he is having a bad day, he likes to look at other peoples lives, to realize that he doesn’t have it all that bad. I could agree, to an extent, but my mind wandered a bit, while I thought of a debate I had just done with myself a few weeks back.
A debate that went something to the effect of, looking at other people, and thinking “Atleast Im not like them” only to quickly discover that you are like them, only…perhaps much worse off. Atleast that person knows they are nothing, while you were thinking you were something, that you weren’t. Atleast that person accepted things for how they were, and not how they WISHED they could be. It’s an exercise I run myself through, every once and a while…Realizing that I am not “All that.”
But I was quickly drug out of my past rant, with his next statement that caught me a little off guard:
“When you think that your life sucks you run into a handy cap person and it humbles the crap out of you cause they would change places in a heart beat”
It struck me wrong, in more than one way, for a number of reasons.
First off, it seems to imply that “Handicap People” are somehow, less than you. As if they are less than a person, and would rather have YOUR life, than their own. Secondly, it somehow implies that your life is better than theirs…and finally, I think that people, any person, can learn a lot from a “Handicapped” person, perhaps learning to accept people who arent “Just like you“ is a place to start.
Im sorry, but it annoys me.
I know Im not qualified to even be stepping on these grounds, but honestly, I don’t know why people look “Down” upon people who arent exactly like them, in every. Single. Aspect.
I guess, however, he answered himself, and my question at the same time when he said “When you think your life sucks, you run into a handy cap person…”. Is that really, what this has come to? Is that really what life has dwindled down to, making yourself feel good, at the expense of others, handicapped or not?
I realized quickly off, that I am not higher than anyone, and that I can learn a lot from other people, handicapped people especially. Ive come to realize that I shouldn’t place myself higher than anyone, and that when I do, I only realize, once again, that I have a lot of learning to do.
What upset me most, about the conversation, aside from the fact that he was downplaying people in general, to raise himself up, was that like usual, I didn’t say anything, and instead agreed by silence, wishing I had the guts to speak out against something that I felt the opposite about.
How does one know that by looking at a person -any person really, not JUST the handicapped – that they would trade lives? Just because their life isn’t the same as yours, doesn’t mean they would trade it. From my perspective, and from my prior argument, it doesn’t mean they are any better or worse off than you or I.
Its irks me. Big time. That people would actually think to place themselves so high. As if somehow saying something that they don’t even know to be true, can turn it into a fact.
I will admit, I sometimes look at people, and find myself thinking “Atleast I don’t have that problem” or “Atleast I don’t do that.” But more often than not, I find myself realizing that not only am I “NOT better” than them, but I am, infact, worse off than the majority.
Last week, I dropped Josh off at his school, pushed him through the doors, gave him a little extra encouragement, and left before he had the chance to erupt into tears. On my way out to the truck, I was accompanied by a mom of another boy, who attends the same class as Josh. She spent the next minute telling me over and over that I was doing “A great job” and had “A lot of patience”.
But the thing is, I wish she hadn’t.
Because she honestly doesn’t know. Doesn’t know what Ive done with my life, doesn’t know the struggles I have, or the situations Ive been in. She doesn’t know that I am NOT doing a great job, and that I have proof of that. She doesn’t know that I am the most impatient person alive. But I didn’t know how to correct her, or anyone else, who attempts to tell me Im doing a “Great job” with the kids.
I don’t know, really, what the definition of a “Great job” is, but I happen to know it isn’t what goes on here.
I know that many people would be appalled to find out how many times laundry is done here, I know many would shake their heads if they realized how many “Nutritious meals” we actually eat, and more disgust would be thrown our way when people find out just how many times Josh actually gets a bath.
I try to run through the flash cards that are sent home with him, and point out different letters, colors, and shapes, but more often than not, I get busy…or forget. I usually make sure the kids have their homework done, but sometimes I let Dylan slide by without completing everything in one sitting. It isn’t usually until after they’ve gone to bed, do I remember that Madison wanted me to help her with spelling words.
Ketchup is considered a vegetable, and juice a fruit.
The back yard is a dirt road and creek that runs into the ocean, where bears like to hang out.
I yell too much, smoke too often, and don’t always remember to lock the door (except when I don’t have my keys).
The kids are at school on time, mostly, but no one sees what happens minutes before, when I wake up, and run them around like crazy. They don’t realize that the shirt Josh had on today was his pajama shirt, or that he didn’t eat breakfast this morning, because he was freaking out about something totally unrelated. They didn’t hear me tell him that “He was only harming himself.”
People who say Im doing a “Great job” only know one thing, and they don’t know the things that go on, behind these doors.
They don’t know I let them watch TV, that I have the theme song for “Sponge Bob” memorized. That I have a five year old who just now is starting potty training. They don’t know that I consider playing outside to be a good thing because it means a few minutes of silence. They don’t know that Josh’s bike came from the dump this weekend, and that he doesn’t exactly know how to ride it. They don’t know that when he sat on said bike, and Madison and Dylan pushed him down the hill…it never entered my mind to stop them.
They don’t know that if put under enough pressure, I would crack. That if asked enough times, I will cave. That if someone cries I will give whatever they want, whenever they want, just to stop the tears. They don’t know that at night, the only things that run through my mind are the thoughts of things that didn’t get done…not plans for a successful tomorrow.
They don’t know that at the end of the day, when the kids are in bed, I don’t clean, and straighten things up, but most often sink back into that dark quiet place in my mind, and try to convince myself that somehow…tomorrow will be better.
They think I do a “Great job” because they see me, two minutes every day when I bring Josh in, and pick him up. They see a brief snap shot into his life, and think that because of it, they somehow “Know” for a fact, that I am, doing a great job.
I have a sinking suspicion that if they saw me the rest of the time, they would have a different notion.
Don’t tell me Im doing a good job, I know Im not.
Don’t tell me I have patience, I know I don’t.
Don’t tell me I screw up, I already know I do.
Don’t tell me the kids are well behaved, or I will ask you for some of what your smoking.
Don’t pretend you didn’t see that, I know you did.
Don’t hold a stare, it only makes things worse.
Don’t tell me what I should do, you might end up with three kids, or a busted lip.
Don’t tell me what YOU would do, because I will ask why you havent.
Don’t tell me what I should do, because Im not you.
Don’t tell me “If I were you” because you arent me.
Don’t tell me what you think I want to hear, I don’t want to hear what you have to say.
Don’t tell me you know what Im going through, because you don’t.
Don’t tell me you understand, because if you did, you wouldn’t have said that.
Don’t tell me to hurry up, or slow down. Im going as fast or as slow as I can.
Don’t tell me how to act, you don’t know why Im acting this way.
Don’t tell me….
Because chances are, I already know.
Ask me, I will tell you.
Advise me, I will listen.
Demand, and I will mark you off.
Just as a side note, I am not in any way refering to people who have (so kindly) offered advice online. Im refering to people I meet at the store, or the school, or on the street who think they (and most likely do) know better than me. People who havent taken the time to understand whats going on, before giving their “Opinion” and expect me to follow through with what they say. I appreciate every bit of advice that has been given to me, and one day, will try to make that obvious.
A friend is that person, who, while your preoccupied with other thoughts, slips in uncharted, and unannounced. They slip in, and expect nothing in return.
They are someone that while you are thousands of miles apart, you know that they would be there in a heart beat. Someone who you know is always there, no matter what time, what year, or what reason. Someone who knows something is wrong before you even realize it.
A friend, a real true friend, is someone that is hard to come by.
They are that person who sits off to the side, silently waiting for you to return from that “Moment” where you honestly needed to be alone, but also the first person that shows up when you say you want to be alone…but really don’t. A friend is someone you know you can count on, and trust. They are that person that knows the most about you, that understands the complicated, confusing, and shares every moment of your life as if they were a part of it.
They are that person who laughs at your mistakes, and tells you the blunt honest truth, not caring if you wanted to hear it or not. Knowing you need to hear it. They are the person who knows when to back off, and when to be there. The person who knows when to laugh, and when to be silent.
They are that steady force standing behind you when times get rough, and that voice ahead that calls through the dark. They are there. No matter what. Rain or shine. To kick you out of the depressing areas of life. To tell you that you screwed up, but that its ok. They know what to say and when.
A friend is someone who takes what you say and somehow knows what you mean. They clean your mind out, and throw away those “Good thoughts”. They are the person that makes you realize you don’t know what you thought you knew, but that its ok, because they already know. They know who you really are, not who you want to be. They know you at your worst moments, and yet they simply do not care.
They have been down the dark dirty roads with you, and still come back for more. They are the ones who you push aside, as you try to make sense of the world around you. A friend is that person you push out of your life, because you don’t need another person. They are that person who you treat horribly, and yet are still there when it matters most.
The person who can make you laugh, and smile even though the world seems to be crashing in around you. They are there to tell you “That idea sucks” and “Think again”.
They dont give up, even when you have.
Ive been lucky to find just such a friend.
A friend who I have treated like crap, shoved to the side, and tried to forget all about. A person who Ive never met, has somehow slipped in undetected, and despite pushing her aside, countless times…shes always found her way back, and managed to be there, when it matters most.
I swore that I would never love again, never make friends, never open myself up to ANYONE about ANYTHING and while Ive stuck true to my word…she somehow slipped in and made herself at home in my mind, taking up residence in the empty spaces reserved for people I care about, and when I became conscious of what was going on….it was too late…and all I could do was freak out, and attempt to once again, shove her away.
This afternoon, I got a box in the mail from her. She told me she was mailing something, and this afternoon, it arrived. I picked it up, hauled it home and tossed it to the side while I got Josh inside…a short time later, I opened it up and remained speechless, and can only be glad I wasnt at work when I opened it:
(Click to read)
I just wish there was someway to repay her for everything shes done. Not just this, but for being a friend. A friend that I really, don’t deserve.
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.
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.
It was a pretty slow day. There was only one appointment. We had just returned from Dylans practice game. It was raining, he was drenched from head to toe, and mud had followed him in the house early this afternoon. My voice was lost somewhere in the competition, between Josh and Sponge bob. Trying to make lunch for three hungry animals, wasn’t going well. Madison had tripped, markers, crayons and pencils went everywhere there wasnt already a mess, and I was silently hoping we would have the place cleaned up before the state arrived this evening.
I wasn’t the only one who heard the door bell over the chaos, and any thing that wasn’t making noise, now was in full competition to REACH. THAT. DOOR. Tripping once over the heap of muddy clothes I let a few words slip, grabbed Josh just as he fell and swung the door open, fully expecting a neighbor kid wanting to play “Mud games” with the kids. I was shocked to find a person. A lady. Standing there. She introduced herself as being from the courts. Asked if she could come in and gave me a moment to recover. I stuttered something about a mess, and something else about lunch, and she advised me that was exactly what she had planned to come see. I hung my head, pushed the kids back, and cleared a trail through the tiny hallway leading her out to the living room.
The kids seem to go bonkers whenever someone shows up. Especially, someone new. They were off the wall crazy with a new person. Every toy in the house started making noise, and the last 10 minutes of sponge bob played out in the other corner of the house. The microwave beeped and Josh let out a wail before he collapsed in a heap on the ground: no one was paying attention to HIM. His voice simply could NOT get any louder. I drug him one way, and the kids split different directions. Showing off their latest greatest skills, drawings, paper collections and anything else. I tried to console myself with the fact that THIS is what she wanted to see, but it did little good. Somewhere deep down inside, I just KNEW she was there to tell me I had screwed up, that the kids were too noisy, and that she couldn’t hear herself thinking.
I was still trying to figure out who she was.
After apologizing a few hundred times, I set the kids down to eat, and stopped the noise coming from the TV. She declined the offers for food from the kids, and politely told them she wasn’t hungry.
It took a few minutes, but she finally got around to introducing herself, again.
She was from the courts. She was a court appointed visitor. She was sent to check things out, because, did I know? There was a court date for next month. Someone had brought up a complaint about Josh. Which is why I spent the next 20 minutes going over his history with her. Listing off his doctors, therapist, teachers and anyone else who has been involved with him over the past few months.
The court date, to put things to an end, was canceled for this month. The regular “Visitor” had handed things over to her, and she was from a different city in Alaska. Handling things long distance, with no phone on my part, wasn’t working too well. So she had to pay a visit. Something she preferred to do, unannounced. She wanted to see the real life. Not what could have been. She wanted to catch us off guard, and see how things were going…and in her opinion, they appeared to be “Normal” she said she saw no reason WHY Josh shouldn’t stay, or why someone would bring up a complaint. She said the house appeared like three kids lived there, and didn’t see any reasons for concern. She gave me her card, thanked me (?) and let herself out as I attempted to stop Josh from throwing his food across the room.
She saw apparently, all that she wanted to see. I hope she got a good look too, because this: is our life.
None of the kids were fully dressed, everyone was missing an important item of clothing. I like to smoke and drink coffee at the same time, and there were big stains on the kitchen counters. Dishes from last night lay piled in the sink. Toys and clothes lay mingled together with the misc art supplies Madi had spilled. There was a piece of bread laying in the hall way, because Josh loves to throw food. The garbage was stacked up next to the door, waiting to go out, and I don’t think I have ever actually scrubbed the toilet.
I was a little miffed at the fact that someone had started something new, brought up something against Josh, again. But it didn’t bother me as much as it used to. It seems to be the new normal. State workers, court appointed visitors, unannounced people – they seem to be creating this “New normal” of ours. For some people, it might not be right. Im not saying I enjoy every minute of it. But I will say this: Im getting used to it. Im starting to be ok with this “Normal”.
This month has been an especially hard one, and I would apologize for it, but it seems almost wrong to give the good without the bad. This is my life: Its laid out before you. Cut and dry. Black and white. Its like walking into the house unannounced. You don’t know what you will find, who you will see, or what will be thrown at you. Your welcome by anytime, its just an offshoot of my life. A different view. Different perspective. Its never clean, mostly dirty, and maybe even offensive to some. I cant promise you will have a place to sit, and you will never know whats going to happen next.
But this, this right here. This what you read, what you see, what you walk into. Is my life. The new normal that’s been tossed our way, and Im learning, ever so slowly, to accept it. Not get too comfortable with it, and enjoy what time I have with the ones I have.
I think she had it right today, when she stopped by unannounced. She wanted to see it like it was, and she saw it…
Just the way it is. Atleast for today.
I know Ive said before, but one thing that really gets to me, about Josh is when people stare at him. Sure. He might have moments where he is just louder than loud, and then, the next minute hes scared stiff to move. I know, I might be inclined to stare as well…but it gets to me. You can feel peoples eyes, staring. First at him, then at me, then at the other kids, and back to Josh again, and you can just hear their thought process as they look at him…wondering whats “Wrong” with him.
Before I was told that there was a possibility that he was dealing with PTSD, and we thought it was simply autism, I felt like I owed everyone an answer. Felt like I had to give them something, answer the questions that weren’t asked…I felt I needed to set their minds at ease and tell them that we had it all under control, and while I didn’t usually say anything, I had imaginary conversations in my mind….where I would tell them that he had autism, they would accept him, and quit staring.
But since finding out what he was put through, this past year…my outlook has changed. He owes nobody anything. He doesn’t owe anyone an answer, if anything, people owe him an explanation. They owe HIM answers. Hes a four year old boy, struggling with everyday happenings. Its progress for him to go in stores, it’s a positive thing when he doesn’t scream, and throw himself on the ground, and to be honest, I no longer feel like I owe anyone an explanation. Infact, the only remark I have in my mind now is “Hes doing just fine, thank you” a response I have considered using a few times, when people simply would not quit staring at him…not because I feel I owe them an explanation, but because I think Josh deserves to go in a store, and not get stared at because he doesn’t talk with words, but rather with mumbled letters.
Yesterday, after one of Dylans practice games, I hauled all three of them into the store to grab a few things for the week. Madison really, really, really, wanted to take Josh to a different part of the store, and get one of those “Free cookies” certain stores hand out. I thought a few minutes, mainly wondering how Josh would react, but it was also in the back of my mind: How would OTHERS react to them. I gave it a split second thought before I sent them on their way. Telling them where to meet us, and rehashing my decision again and again.
It wasn’t 10 minutes later, that Madi returned…without Josh.
It was one of those “Heart hit’s the floor” moments, while the worse case scenarios played out in my mind: He had ran out the door, were those sirens I heard? Someone took him, did those people actually exist? Something happened, he fell, the scene played out before me…I didn’t want to freak out, but its pretty near impossible NOT to freak out when something like that happens. I asked Madison what happened, doing my best to practice all the “Stay calm” things I had read about, but never thought I would have to put into action, and I raced past those thoughts and blurted out something to the effect of “WHERES JOSH!” before I took off running in the direction of the “Free cookies”
Madison started crying, her face was already red from obviously crying…”He just….just….just took….took….off!!!” she jerked out.
The store isn’t that big, none of the stores here are. But it was bigger than the family shopping center we usually go to. Compared to stores down south, it is fairly small. But compared to ones up here, its big. Its big enough to loose kids in, this isn’t the first time. Im sure it wont be the last, but logic wasn’t working very well as the kids and I ran to where he was “Last seen”
Apparently Madi had let go of his hand long enough to take a cookie, and he bolted. He disappeared around the corner, and she couldn’t find him…
We rounded the corner, I sent Dylan down one aisle, and told him to check that end of the rows, and we would check the others…aisle one. Nothing. Two. Nothing. Three. Nothing. Panic. Things were really starting to take action in my mind. While the store itself isn’t that big, there is an exit that lets out into the parking lot. Blind corners and crazy drivers. At the other end of the store, the outlet to the mall.
More people. More shoppers. More people. But no Josh. Madison was in the middle of a full blown melt down, as we rounded the corner just in time to see the back of a blonde head disappear. I pointed, and we took off running, just as a store clerk rounded the corner with Joshs hand in hers.
Everything took place in the matter of minutes, minutes, that seemed like hours. Something you only hear about happening, you don’t actually expect to happen.
She handed him back, saying she had found him “Picking fruit” in the produce section. “He doesn’t talk” she added, almost as if she was demanding something. I couldn’t think of anything to say and insteadI picked Josh up, thanked her, and turned to find Dylan, hoping we hadn’t lost him as well…
He wasnt scared. Wasn’t fazed a bit. Big brown eyes stared as if he had no idea why we were so panicked, or why Madison was crying. He had no idea what could have happened, what should have happened, what MIGHT have happened…
“You should keep a better eye on him” were the last words she said, before we had left her sight…and it was then, I felt that familiar feeling. I owed her an explanation. I should tell her why he was running reckless, I should tell her why he didn’t talk, why he was doing what he was doing, and why he didn’t act his age…
But I didn’t.
I didn’t know what to say, didn’t have an explanation. Some things he does, I cant explain. Most of what he does, I can only guess at.
In my opinion, hes working hard…real hard, on being a four year old boy, without so many fears, and issues. Hes working hard on becoming a four year old boy…and nothing else. In my opinion, he doesn’t owe anyone, anything…
But then again, I could be wrong.
