Filed under: Good for nothing thoughts, The kiddos | Tags: Kids, My thoughts
A few months ago, when I was working at a different place, a customer came in with her kid. Who was in the habit of repeating herself. Every so often the kids eyes would light up and she would say “I have a green jacket!” repeat 20 times before her mom would ask her to say something new. She would think a few seconds, her eyes would light up and she would say “YOU have a green jacket” repeat 20 times, before she went back to her original point that she “Had a green jacket”
Lately, that’s how Ive felt.
Like everything I say is a cliché, like Im just repeating myself, working myself further and further down into the downward spiral where I don’t want to be.
I told myself that just because the year ended on a sour note, didn’t mean it was going to start on one, and I promised myself that I was going to be more “Upbeat” and “Positive” and so forth. But the first came and went, and so far I have deleted atleast three complete posts, because they are downwards, negative, and don’t focus on the good as much as they should.
I go back and forth with myself. “I need to say these things to get them out so I can focus on the positive” and then “I don’t need to say these things, they really wont matter in a few minutes” and I remind myself of the kid who came into the shop, who flipped back and forth between two subjects.
Things are usually pretty upbeat around here – with three kids its really hard NOT to be upbeat most of the time, but sometimes, and more and more lately, things have been…downward. Not on purpose, its just how its been. How things have fallen into place, and as much as I try to argue with myself that “Its normal this time of year” I cant help but shake it…
And as clichéd as it sounds, and repeated as it is…it still holds as much importance to me as it did on day one, when I made the choice to follow through with this decision.
Two years ago I gave up drinking in hopes of getting visitation rights of the kids. Two years ago that was all I could hope for – visitation rights. I wasn’t even hoping to see them alone, I was just hoping for a few minutes to see them, to know that they were ok, to hear from them what they wanted. I honestly didn’t know what my next move would be. I hadn’t PLANNED on getting them back, atleast not this (that?) soon…its just, happened.
When Molly passed, I hit that bottom that people talk about, the bottom that I thought I had hit many times before – but didn’t reach until I walked out of the hospital that morning in August. The bottom. Where there was no other way TO go but up. To go up, or be done…and as much as I wanted to be done, at that very moment, I wanted to atleast see the kids first. That was all I could hope for, all that I could look for, and all that I could even think about.
Two years later I have full custody of them.
I don’t know when, or where I made the decision that I was going to fight for them. I don’t remember the day, the moment or the time. I don’t even remember making the choice. It was gradual. Step by step. One thing after another, and pretty soon I was knee deep in kids, kids and kids.
I sit here tonight and toss around a number of thoughts, a number of clichéd, over done, “My jacket is green” thoughts. Is this the right choice? Did I make the right decision? Is this the best for the kids? Did I jump the gun, decide to fast, make a decision I shouldn’t have?
I think back over the circumstances, and try to remember why I thought I *could* or *should* get them back. I know I wanted them to grow up, together, and that really, at the time there weren’t too many other options for that.
But. There is always a but.
What about now? Now that things have calmed down, now that the kids are legally mine, what now? Is this it? What I was hoping for? Is this the end? Is this where is stops? Is this…really it?
It wasnt one thing that made the choice final, it wasnt simply one option, or one thing that decided the case for me, it wasnt any one thing….it wasnt even a combination of things, it was the kids…and what Ive always wanted for them. The best. Im not saying that Im giving them the best, Im not trying to even say I come close to giving them the best…Im just saying that I cant see to it that they are (mostly) healthy, happy, and safe…if they are all off somewhere else, but more importantly, that they are together…because while I might not always be able to give them the best, they have each other…and that is what I hope they will always have.
That statement has taken us through some rough roads. Through courts, state visits, Mondays, social workers and all the rest.
But now that its all over, now that the kids are mine, and I am solely responsible for them, the full impact its beginning to sink in. The full responsibility that I took on, is starting to hit…and Im beginning to wonder, like Ive been asked so many times: Am I cut out for this?
I want the best for them, and I will continue to seek out whats best for them, and fight for whats best for them…but Ive reached a point…a point where I have to stop, and wonder…what IS best?
Is THIS best?
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: 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.
I think its going to be a while before were able to wipe that grin off your face…
Since landing myself in this situation, Ive done things that I never thought I would do before, things I swore I would never do, you know, assuming I got into a situation like this.
I used to tell Molly that there were monsters under her bed. I told her that they would stay there, as long as she stayed in her bed – just to get a few hours of peace at nap time, and bed time.
Ive been known to pull the “Santa sees you” card once or twice.
Neither of which I have considered to be flat out lies. After all, there could have been monsters under her bed, seeing how often we cleaned there.
And well, Santa DOES see them…so.
Lately however, I pulled something I never thought I would. Something I never even dreamed of doing. I bribed Dylan, for a whole week straight. With a pineapple.
I figured if it works, then why mess with a good thing?
For the past few weeks, he has been begging, literally begging to buy a pineapple. No reason. He just…wanted one. Or actually, NEEDED one. I told him that if he behaved himself I would get him one. Then I pulled it out when I needed him to do something else. “Remember the pineapple” was all I had to say, and eventually, we had it down to just having to simply say “Pineapple.”
Bugging his sister? Pineapple. Instant world peace.
Homework being drug on way to long? Pineapple. Homework done.
Wont clean his room? Pineapple. Ok. So the pineapple lost its charm here, but other than that, it worked. For just about everything…and believe me, we I worked this pineapple thing.
So this afternoon, after school, I took him in to receive his “Prize.”
Amazingly, they were on sale. Now, I don’t know much about pineapples. Infact, I don’t know the first thing about a pineapple. Don’t know how to pick one, don’t know how to cut one, but damned if we didn’t leave the store without that pineapple. We stood in a long line, him, I and that pineapple. Paid, and left.
Once we got out to the car, he listed off about twenty things he wanted to do with it, all of which were quickly followed up with questions. “If I plant this in the ground, will we get a pineapple tree?” “Do you think sponge bob lives in here?” “What are these pokey things on here for?” and so forth.
We answered a few of those questions tonight, however, when we managed to cut it open.
And when I told him that “This one must not have been sponge bobs house, better luck next time, buddy.” his eyes lit up.
“Can I earn another one for next week?”
I dont know, but I think we might be onto something here.
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.
Ok, so really? Yesterday wasn’t ALL that bad. It was just a combination off too many people too close, in too little time. People who took advantage of a 12 year old inviting them over, to see what was really going on over here (I swear we don’t grow drugs, really). At the end of the day, it was just a lot to try and deal with. But all in all, it was a decent day.
The one thing I don’t think I elaborated on enough, was the fact that we havent done a real holiday, in who knows how long. Usually the kids go somewhere, and I work. I don’t like, holidays. I really don’t. So this year, stepping out and doing the whole nine yards, was by far, the stupidest thing farthest we have gone in a long time.
When it was just the kids, it was really kind of nice. Meaning, where there weren’t 101 people trying to fit into the already small house.
It wasn’t until the kids were in bed, I had finished my rant about how I hate holidays, and I was laying in the dark, did I really start to think about things in a whole new light (or dark).
Last year, Josh was…
A mess.
Can I say that?
Last year, he spent a majority of his time in the corner, freaking out with the slightest movement in the wrong direction. He didn’t want anything to do with anyone, and would scream and yell if the kids got too close. No one would say what happened, why he was like this, or what was going on. There was talk of institutionalizing him, giving him over to the state, and who knows what else. We had three months to make some sort of progress, to convince the courts that he was worth keeping. It sucks to say it like that, but its how it was. He was just another number, another case, another disturbed individual, and who wanted to “Waste” time on him?
Last year we were knee deep in issues involving him. Court dates, paper work, therapist, social workers were all part of our lives. The in and outs of every move that was made with him, or for him, was somehow kept track of, and no one, NO ONE would say what was wrong with him. There was “No hope.”
I don’t even remember what we did last year for Thanksgiving, but Im pretty sure it was similar to the years past: Nothing.
Last year, every single post, somehow, in one way or another, mentioned Josh, or a new problem or issue. Because last year, that’s where our focus was…with less than two months left to get him into a position where he appeared to be worth helping.
Last night I lay there thinking, about just how far we have come. Thinking about how far not only Josh has come, but how far Madison & Dylan have come as well. While the spot light was on Josh, they got shoved to the side, and the only times they really complained were when after a few attempts at doing something, I gave up because it was too much work with Josh. They were in the middle of the mess, right there, every day, seeing what went on, what happened, knowing the same amount of things I did. Knowing who he used to be, and who he was now, and not knowing why. There wasn’t much I could keep from them, even if I had wanted to. They gave things up, walked out of stores hundreds of times, endured the stares, and everything else.
But they understood, and understand, and I havent even had to tell them.
The know when something is important, and they understand how big it is when Josh accomplishes something small, and minor. They don’t care that he isn’t caught up with his peers, they love him how he is, and who he is. Infact, most times its them reminding me of these things. Not the other way around.
While I sometimes get hung up on the smaller issues…they see right past it, and love him. All the time.
It hasn’t been easy for them. For any of them. They have days when nothing goes right, they fight just like every other kid, yell and carry on, but at the end of the day…they tell each other good-night, and the days problems are put to rest. They don’t dwell on the small things, they don’t get hung up on the fact that someone gave them a different look, because they were with Josh, who is five years old, and apparently unable to control himself when he flips out on the ground.
Its not the life I would have chosen for them. To live this way, to go through what they have gone through. Its not the way I would have hoped their childhood would be spent. I would have preferred they didn’t have to loose their parents, and go through foster care, and into the “System.” I wish I could give them more, and give them better. But sometimes, that’s not what really matters…
And while yesterday was up and down, I was thankful, at the end of the day, to have them here. To have custody of them. For it to be OVER.
Im thankful that this year, while we still have problems and issues to work through, that Josh is here, with cousins who are more like siblings, who really truly, love him for who he is. Im thankful to have them. Here. Right now. Together, for each other.
Ask me again, when they wake up, destroy whats left of the house, and invite the REST of the neighbors over for leftovers, and I might have a different opinion. But right now, I am thankful: For them.
Just as a side note: Does anyone have any idea how hard it is to get three kids to look at the same camera? I mean, seriously.
Its like…”Hey kids OVER HERE!!!”
“No, look this way”
“Dylan knock it off, leave your sister alone, no bunny ears”
“Madison dont cry, red eyes wont look good”
“Wheres Josh?”
*Five minute break to find Josh*
“This way kids!!”
“Last time I checked, I was the only one in the room with a camera, but NONE of you are looking this way”
“Ok, we will just go with the one that looks like Josh is all strung out on the weed that we do NOT grow, Dylan is tired of smiling, and Madison, well, shes lucky shes even IN the picture…”
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.
Filed under: Molly, The kiddos | Tags: disconnected & random, Josh, My thoughts
Everyday, after Josh gets out of school, we have about 2 hours before Dylan comes home, and another ½ hour or so, before Madison shows up.
People often have told me that Josh wont ever be like “Other kids” and most times, Im ok with it. Do I really want him to be like “Everyone else”, what IS the real definition of normal? Yea, I trip just about every other day, over some stupid comment, or thought that has crossed my path. But for the most part, I really am ok with him. Being who he is. How he is. Im pretty much happy to have him here, to have full custody of him, to not have to have him worry about living with his dad, or being sent around to different homes. To have him healthy, and mostly happy. Most times, that is enough. Even though it seems that as of lately, things have been negative, things have been pretty good.
Really. Shocker, I know.
For the most part, we are striving to put the pieces back. Not how they were, but trying instead to find where they belong now. Not trying to recreate the past, but trying to put the pieces where they need to be, for what they all the “New Normal.” Which is something I often, despise.
I don’t want the new, I want the old. But I know I cant have the old, and the only way. The ONLY way to move on, is to accept that…and move on.
It hasn’t been easy. Its been far from easy. We arent there yet, wherever there is. But its ok. Really. Were here. Where we are, and that is ok. It has to be.
Sometimes it takes more convincing. More convincing myself that it IS ok, that THIS IS ok, that it IS ok. I have to remind myself of that quite often…because a lot of the time, it just doesn’t seem ok. It just doesn’t. Nothing seems right. Most of the time, everything seems quite off.
But it is ok. Really.
Molly used to wait at the window, for the kids to come home. The hour after her nap, and before the kids came home, often seemed the longest. When she would sit at the window and whine, and ask what time it was, if it was time, if she could go, what time it was, if it was time, and well, you get the idea. At 3:15 I would fight her into her shoes and coat, open the door and watch her coat come off as she ran her heart out to the bottom of the hill, where she would wait.
It was the perfect combination. She got her freedom, I was able to watch her.
Most days she would throw rocks, kick the dirt, pick leaves, throw them in the air…but some days, she sat still. Waiting. As anticipation built inside. She sat on a rock at the bottom of the drive way, thinking she was free. That she was so big, waiting for the bus. Alone.
When the bus would come, she would jump, and I could almost hear her scream. The kids would run off and give her the hug she would be waiting for, and together, they would race up the hill and into the house.
It was the 15 minutes that she looked forward to everyday. Every single day, she would wait. She would get excited, ditch her coat and run. Run. Run.
Yesterday I took Josh out to meet the kids. We walked a few yards away from the house and stood at the main road waiting for the bus to show up. I don’t know if he really understood what we were doing, but he got the idea when the bus showed up (after initially freaking out) that the kids were home…and just like with Molly they ran off the bus and gave him a hug. The hug he had been waiting for all afternoon.
This afternoon, as the time got closer for the kids to come home, he brought me his coat.
And a thousand and one thoughts ran through my head as I helped him get his shoes on and walked him down the road, to get the kids off the bus.
