Filed under: People, The kiddos | Tags: Autism, Dylan, Josh, Kids, Madison
Lets start at the beginning, shall we? Which started this morning, when I woke the kids up and told them it was time to go. You all know that moment, the one when you realize your up late, yet again, only today you really don’t have TIME to be late? Yea. That one.
The kids left this morning to see their grandparents for two weeks, this means that this morning I needed to have them at the airport no later than a certain time. Right? Right.
So after getting the kids up and ready and out the door with their bags, and stuff, and who knows what else, because I really didn’t even think they packed…we were off. Only to discover that lo-and-behold, I had read the ticket wrong. Infact, we were a few hours BEFORE time. I don’t honestly know how this happened, so don’t ask. It just…did.
But since they were already dressed, and up, and in the car, and we were at the airport, I couldn’t just…go back. We didn’t really have time for that, so instead, we decided to make a “Quick trip” to Walmart to get a few necessities that they had forgotten, and I hadn’t remembered until then. Things like tooth brushes, and shampoo. The things that they never use here at home, but I wanted to send with them just to make it look like we have things all under control up here.
Whats important to note here is that “Quick trip” and “Walmart” were used in the same sentence. I know better than that, really. I do.
Whats also important to note, is that just because we were a spell early, didn’t mean we had all day – we had close to an hour, because the airport is on the other side of the channel, which means a two minute ferry ride is needed. The only problem is the ferry leaves every 15 minutes, so if you miss the one your wanting, you wait 30 more minutes. Confused? Good. Your tracking well.
We headed out to Walmart, which is maybe 3 minutes away.
Unloaded, and headed in. I believe this may have been the first mistake. I know I have mentioned before that I don’t do crowds that well. Lots of people, together, in small spaces tend to do me in. Josh doesn’t handle these situations that well either – for different reasons of course. But it really was a recipe for disaster. And disaster it was.
After making our way in the door, past the loud animated toys and kids begging for money, past the greeters, shopping carts, horrible smells, and obnoxious adults, we were into the main lands.
Which were.
Overflowing with people.
Because folks, it’s the last week of Christmas here – and ½ the town is out there shopping their hearts out.
The aisle that was needed was simply a few paces to the right. It shouldn’t be that crowded was what I told myself – but it was. Because the four other aisle nested right beside this one, were the Holiday aisles. The ones that change constantly, and are always flooded with people, pushing and shoving, grabbing and fighting.
We made our way to where we were going with little trouble, grabbed the first few things we saw and attempted to make a quick get away – which wasn’t to happen.
The gob of people who had followed us in were walking past, on their way to the over crowded aisles, which pretty much left us blocked in. Which more or less turned into panic. Being trapped in a walmart aisle. I considered saying that I wouldn’t buy them toothbrushes, I would sell our souls, whatever, just let us out. Let us out now…but with the kids in tow, I didn’t figure it was a time to be freaking it up.
So we waited, and waited, for what seemed like hours, but in reality was only probably seconds.
The lines were brutal, because we all know that Walmart refuses to employ more than two people at the check stands, especially this time of year. The rest of them are off at meetings, or stocking the bare shelves, or sweeping the floors…or tending to the “Clean up in aisle 4” mishaps.
Since we were there, and since we were in the right check out, I decided to get some smokes to keep from having to go back into another store. Which was fine, until the lady in line behind us had a fit about me buying that with “Those precious children” and proceeded to give Josh what she later referred to as a “Love pat.”
I don’t know about you, but I know that if she had tried that with me, things would have been a little less pretty, and let me tell you things were NOT pretty. Josh was barely hanging in there, I know better than to take him into busy stores, I know how he reacts, but he was doing fine…he was clearly freaked out but he was doing ok – standing there as close to me as he could get, with his death grip on his bear – but he wasn’t screaming, he wasn’t freaking, he wasn’t doing much of anything, until that lady put her hand on his head – and then life at Walmart stopped.
Or atleast, life within a five mile radios stopped…and because its how I am, I finished buying what we had went in for, and paid, before walking out with a completely melted down version of the Josh we had brought in.
I know how he reacts, and I know why he reacted, so it wasn’t that big of a deal right then and there. He calmed down once we left the store, and didn’t seem to have too much permanent damage (a big lip from hitting the counter on his way down). We made it to the airport, on time, got the kids checked in, said good bye and the watched Josh freak out again, because they were leaving him…
Which was a bit harder to deal with than the Walmart melt down.
I knew what caused both of them, but the first one was easier to deal with. The first one was a result of too much in too short of time…too much noise, a stranger touching him, someone startling him, it was a given. But it was ok.
The second one was because they were leaving him, and although I tried to explain to him that they would be back – he didn’t seem to believe me, because all he saw was them walking away, leaving him on the opposite side of the glass – when he clearly wanted to go with them…
He doesnt attach himself to people that easily, doesnt trust that many people, doesnt get upset over too many people…but Madison and Dylan are on the top of his list. They make his world go ’round, and they were leaving him…walking away calmly was not something he had planned on doing.
Filed under: Letting it out, People | Tags: Change, disconnected & random, Kids
When my mom first showed up, and I wrote that first post, I decided that I wasn’t going to fill every minute of the day trying to find some way to hate her all over again. I didn’t need to find ways, I had enough…and I wasn’t going to fill the empty pages here with the distaste I feel for a certain person. Not only is it low, she isn’t here to defend herself, and while my side of the story may or may not be true…she has her side that she is entitled to. I am big on giving both sides of the story, and as a result, I decided I would refrain from all the wonderful tales that I have from this past, almost week, of time spent with her.
But it hasn’t been easy.
I don’t know how many times I have sat down, and filled a page or two, before looking back and realizing that it all held the negative aspects of life…and I had to ask myself…is this really something Im going to want to look back on and actually REMEMBER? Is this something that, come sometime in the near future the kids might want to read? Is it really fair to record MY side, without hers? And I would delete it.
Its not easy, living with someone you don’t get along with, or someone you don’t exactly see eye to eye with, but it is much harder to try and find the positive, the good, in a person like this. I heard once that the people who you need to be the nicest to are the people you hate the most. Not for their benefit, but for yours. Ive tried this week, to make an attempt at the positive. I will say that I have not done well. Infact, I have spent many days with my mouth clamped shut, biting my tongue…I have spent many hours outside, wishing to cool down. Because I am not that great at thinking positive. Let alone, TALKING positive.
Its been a real work out. Mentally, atleast.
I have spent those hours outside asking myself “Is this really something you want to say?” and answering back “Yes, yes it is” only to have to spent another hour outside to remind myself that no. That is NOT what needs to be said.
She has seen the ins and outs of Joshs ups and downs. She has seen him flip out, freak out, and all the rest. She has been around to witness first hand the struggles and success we have with him. She has been there to help cheer him on, and has walked out of the store a few times with us. Just because she came, didn’t mean that Joshs problems would just disappear. She got to see first hand what happens, and how it happens…and that most times, it isn’t anyones fault. That he isn’t an unruly kid, who lacks discipline or self control.
She saw the unorganized chaos, the messes, the fits, and fights. She saw it all. In less than a week.
Yet she still has no “Immediate” plans to leave.
Shes been head butted by Josh, yelled at by Dylan, and even had some attitude from Madison. She came here to see how it was, and shes seen. Just what goes on. Everyday. All day long.
And as much as I really do NOT want to say it, I hope she saw some good too.
I hope she saw the hugs and kisses. I hope she heard the laughter, and saw the rare moments of kindness that was shared between two siblings. I hope she saw through the mess and chaos, and realized that there is more that goes on here. That Josh isn’t ALL about fits and freaking out. I hope she got to see him in action. I hope she heard his contagious laugh, and maybe, just maybe, got to see what a real day here is all about. I hope she realized that the messes could be cleaned, and the laundry would be there in the morning. I hope she knows that Im not trying to give these kids a slow death, but rather trying to raise them up, to have a full life…even though some days the creek does sound promising.
I hope she saw past the unclean, trashed, tight, smelly house, and into the lives of her grandkids.
I hope she got the second chance she wanted. Whatever it was she was looking for, I hope she found it. I hope they gave it to her, and she was able to see through the mess Ive created. I hope she realized that they are (mostly) happy and (usually) healthy. I hope shes knows there is more than what meets the eye.
And I really hope she books a ticket soon, because this positive gig isn’t going to last much longer. Im just saying.
Filed under: People
Looks like its here.
Despite my best intentions to keep the recent sickness out of the house, Josh managed to pick it up somewhere. Which isn’t hard, considering he usually has some “One on one” time with the floor when we go out, or puts something that doesn’t belong, in his mouth. Most likely, he brought it home from school, I had a bad feeling, sending him one afternoon, and when he came home that afternoon, his bus driver said that one of the kids had gotten “Violently” ill on the way home…and since Josh is the last kid off the bus, he was on there a good 30-45 minutes after the fact.
Josh doesn’t usually get too sick, but when he does…its watch out.
As I mentioned a few days ago, my mom showed up today.
Which means, that instead of going about our usual regular business…the kids all going to school, and I head out in search of a job, I have been at home, thanks to Josh, with my mom. One guess on how many nerves I have left.
Someone asked a few days ago, why she was coming up. To be honest, I couldn’t answer that. My best guess is that she wanted to see the kids, but other than that, I don’t know. She doesn’t like small (unclean, trashed, tight, smelly) houses, doesn’t appreciated the cold and has never been big on small isolated Islands. She doesn’t enjoy traveling, and flying ranks pretty low on her list of things to do. So what would inspire a trip, on an airplane, to an isolated island where she will spend who knows how much time in a small (unclean, trashed, tight, smelly) house filled to the brim with germs?
She told me a few weeks ago, that she wanted to see the kids. She hasn’t seen them since before Molly passed…and even then, she didn’t see the kids. She left a few days prior to Molly’s death. Which is a story I wont get into now.
She spent the morning/afternoon, aside from complaining about how cold and dirty it was here, sleeping. Or, going through “Unneeded” items. Since her arrival, she has told me a number of things that she wants to “See done” before she leaves…things such as organizing cupboards, and cleaning closets. Great inspiration for me, to say the least. I don’t like people to TELL me what to do, I believe I have mentioned it before, ask me to do anything, and I most likely? Will gladly do it. Tell me to do something? It wont be happening.
She has also corrected me, numerous amounts of times, about the way I am raising the kids. I shouldn’t let Dylan up from the table until ALL his homework is finished. Madison needs to learn to cook and clean. Josh should be talking in sentences now (never mind the fact that he is sick). I shouldn’t let them “Get away” with so much. But on the other hand, I tell them no too often…and lets not even get started on trying to help Madison with a problem at school…a problem that I most likely would know NOTHING about. Its left me outside taking a deep breath, contemplating the nut house, or a jail cell.
I know I shouldn’t be talking bad about her, after all, she IS my mom. Right? But we wont be going there, at the moment.
She says the kids are her way of “Getting to know her kids she never knew.” That she feels its her “Second chance” at things…and she doenst understand why, I just don’t understand.
I need to accept the fact that I cant do a damn thing right, and just move on. It shouldn’t be that hard, but it is. Its frustrating, and hard, when I cant do the simplest thing right. As if I don’t second guess myself enough, Im now left weighing the two evils: Which is worse: fever reduction medicine or possible future issues due to the fact that there are “Known to cause death” ingredients in said medicine. Which is worse: Letting a fever get too high, and risk possible brain damage, or giving this deadly poison to him. It seems to me that whatever my choice is, Im going to be inflicting some harm to his body.
Maybe it would be easier if I knew when she would be leaving, but she purchased a “One way fare” because it was “Cheaper.” Something tells me she doesn’t plan on going anywhere, anytime soon. Especially considering all the harm I could be am doing to these kids.
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.
