Ill do my best to explain it, with words that I can understand, which most likely will mean, little words. Small words. Words that…wont make much sense.
I have a friend, who I have written about once, maybe twice. Someone I met a long while ago, and consider to be among the few I consider friends. Last night she invited us down to her place for Thanksgiving. She said a few kind words about her family being our family, and even offered to make pie. I smiled. Nodded my head. Agreed that it sounded like a good, wonderful, fun, exciting idea…
But then it happened.
Like it often does.
I found myself wishing to be hugging the floor. Instead of making plans. Plans for the future. Plans to meet someone I have never met before. Plans. Any sort of plans. Plans for the holidays. But mainly, just plan…for something we might, I might, enjoy.
It happens.
More often than I care to admit.
I cant make sense of it, don’t claim to have it all figured out. Don’t even want to attempt to understand it. But sometimes, I wonder if I should even HAVE a friend, this friend…this person that I don’t really deserve to know. I find myself stepping back, second guessing, shutting down, and shoving away.
It happens.
Atleast to me.
I have the right mind to say yes, and go forward with it. To bring myself to the end of this life with worry and stress about it. Just because. But I wont. I know I wont. Which is the only way I can calm myself down sometimes, is talk to myself, and decide against doing something I already decided to do.
I don’t know why, I don’t know how. I just know it happens.
I don’t let myself, get close. To anyone.
And when I do, when I find myself slipping, and getting close, getting to know someone, and really starting to look forward to someone or something…I stop. I push back and run. Because of what it means, to me. In my mind.
If I get to close to someone, or something. If I let myself love, or like even. If I show any hints of enjoying anything or anyone…something in me snaps, and says “Woah, hold on, remember last time”…and I do. Remember, last time. I don’t want to go back, don’t want to relive the past. I don’t want to ruin anything, or anyone else again, and so I stop. I hold back, step back.
Its been a real struggle, this past year. To let myself, or force myself, rather. To love the kids. Something that should (and does) come so naturally…but is something that goes against everything, and anything I believe. Its been a real struggle, a real balancing act, a constant battle. Something I struggle with every day. How much should I love them? When is it too much? When will it harm them? It gets to me, sometimes. If I love too much, then something could happen. If I let them love, I could hurt them. I could make myself crazy over those thoughts. But the truth is, I already am. Crazy, that is.
When it comes to people, real people. Real friends, real honest people who want to love, and be loved. I find myself slipping back, pushing away. I find myself wanting to run. To let go, and just…forget.
It’s a daily battle. Its something that haunts me. That drives me nuts. That controls my life.
…and I will admit.
It is something that keeps me up at night.
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.
Filed under: Good for nothing thoughts, Letting it out | Tags: My thoughts
Often times I think about “Going back” I entertain myself by thinking “If I could go back…” and continue to fill in the blanks, wondering how the outcome would be different, how things would change further on down the road, wondering how things would pan out…if I went back and changed just a few things. Would it really matter? Would things eventually end the same?
At the end of it all, I know that its just a way of passing time. Just my way of trying to fix something that, really, cant ever be fixed. In the end, after I run myself through the proper steps of changing the past, I remind myself that I cant go back, and that most likely…is a good thing, if nothing else.
This past week, however, it has seemed that I have been taken back.
A few years ago, when I got the kids back, I lived with two other people. One of them was real close to his grandma, who instantly picked up on the kids, and filled the place that their own grandparents hadn’t. She was the grandma they didn’t have, and filled the spot very nicely. She stepped in, without over stepping, and treaded on the thin grounds I had laid.
Sunday my old roommate showed up on the door, with news…that she had cancer, and was being sent south to consult about further options. It was a shock, a blow, and pretty much a slap to the face – because while she wasnt exactly related to me, wasn’t technically close, she was someone I knew, he is someone I know, and cancer is something Im all too familiar with.
This summer I have spent some time getting to know a certain person who was up here for the summer – working the fishing boats. There isn’t anything that gets you to know someone better than standing in the rain at 2 in the morning gutting fish, which is what we did two, three times a week this summer. Last night, he showed up at the door, which was odd, considering that the fishing season has been over for a few weeks now. He showed up because his brother had just called to tell him that his wife had died while he was at work.
Naturally his brother was trying to get himself south as quickly as possible to be with him, but had no clue where to start, or what to do.
…and then this morning, at work.
Someone else I know wandered in, having just finished a funeral last night, and a grave site service this morning.
…and in the matter of a week, I have been taken back all the way through each step. Cancer. Death. Funeral.
I tell myself its fine, and it is. Im not going back, even if I wanted to I couldn’t. I tell myself that there isn’t any undoing or redoing, whats done is done. But then I get “Smart” and I search out an old post I had written a few years back.
This post, to be exact. The post where I was looking through the paper for someones obituary, and proceeded to go home…to Molly.
Today when I read it, it hit me. Everything clicked, everything came together. No, I wont be going back, but my life has a funny way of running in circles. A funny way of repeating itself. A funny way of tricking me into believing that everything is ok, and then slapping me upside the head. Two years ago, when I wrote that, death and Molly hadn’t even been thought of in the same sentence. She was a (mostly) healthy, happy girl who was growing up despite the odds being stacked against her. That post was written less than a month before death knocked on her door. It was written while she was still alive, although less than two weeks later, she would be gone.
I cant go back. No. But every so often, it seems as though Im living through the past, all over again.
Everywhere I turn, it seems to be advertised “Back to school”. Everyone is preparing, in one way or another, to either return to school, send kids back to school, or start work all over again. My attention has been focused mainly on those of the kindergarten range. Parents busily packing their kids up for their grand return, or their actual first day of school. Kids are excited, and they all seem to have a successful transfer in, or back. Later this week, Madison and Dylan will start back up…but for now, here, its just Josh…and things arent going how I anticipated.
I know I said last week sometime, that Josh had bit a kid. He hasn’t participated at all, and spends a majority of his time in time out, or on the floor freaking out before going to time out. Its clear, over these past two weeks – that hes not learning. Last week his teachers asked three or four times if I thought I had too high of hopes, perhaps I should lower my standards, lower the bars, and give him some reasonable expectations. I didn’t expect him to be ready for first grade next year, did I? I told them to simply keep things how they were, thinking and knowing that Josh took longer to adjust, but once he did, all would be fine.
Yesterday, when I picked him up, his therapist wanted to talk with me. He said that he thinks we may have stepped too soon, that Josh (apparently) isn’t ready for this, and its doing him more harm (biting, acting out more, etc) than it is good. His recommendation was to pull him out and put him in the pre-kindergarten class instead.
It wasn’t what I wanted to hear, even though I know its true.
I know that this class he has been in is way too much for him right now, even if they technically are his peers. Hes simply not ready, and all he is successfully doing is distracting the rest of the class. Hes not ready yet, and to push him to keep going, isn’t doing him any good…and while I know its true, it was still hard to hear, because it wasn’t what I wanted to hear.
To be honest, Im not sure what I wanted to hear, I suppose what every other parent or guardian would want to hear, that their child is smart, and excelling, not back tracking, and falling behind. I guess I wanted it too much for him, and maybe that’s wrong.
Today I walked him in, past the class room he had attended the past few weeks, where the kids were mostly silent and paying attention, excelling, and learning…and into his new room. A brightly colored room with words and numbers scattered around. There were less kids, all who were Joshs age. His new teacher introduced herself, and Josh flipped out while I pondered just how much to say about him. Hes a great kid, hes smart, he really is, he understands…but how much should I tell her? I don’t want them thinking hes completely worthless, or stupid – because hes not, he sometimes just acts that way. “Hes really…a bright kid” I managed to say. She smiled and said she had already heard so much about him. Which was no comfort to me. Most likely, she had “Heard” him from the class next door.
I told him good bye, watched his face crumble, and shut the door before he squeezed out.
I just hate it.
Ive never wanted him to be like any other kid. Never hoped that any of the kids would be “Just like the rest of them” but sometimes, like now, I wish he were similar. I wish this weren’t so hard on him, that things came easier, that “Simple” things weren’t so difficult, that he didn’t have to try so hard. I wish he would understand that its ok, that its for his good, atleast I hope…
I picked him up an hour earlier than usual, because this class doesn’t go as long as the other one. “He did really good” was the first thing his teacher said, even though it was obvious he had a rough day. She ruffled Joshs hair, said a thing or two more, and then said good-bye to Josh.
I like to think hes making progress, and that hes changing, that he really understands, and that he knows. I like to think that someday he will be going to school, alone, and actually liking it. I like to think that one day (soon) he will be potty trained…
But none of that really matters. What I really wish is that life weren’t so difficult for him. That maybe one thing would come easy…and maybe someday it will, this just isn’t someday, apparently.
“It’s the first day” “Give it time” “Its JUST kindergarten” “This really is whats best for him” are all things that I have tried, and attempted, and repeated, and told myself over and over today, silently wishing and hoping that things would go better than expected, and Josh would simply “Fit in”. Hoping that this morning would be as bad as things got, that maybe his day would get better…and perhaps, with any stroke of luck, he would have a good day, and WANT to go back tomorrow. Maybe. I could atleast dream, and hope, and wish.
Even thought I know it does no good.
I picked him up and heard comments given to other parents. A round of “Hes a bright child” and “She did really well”. Except when it was Joshs turn. Instead, comments like “He had a really rough day” “He spent most of the day crying” and “The first day can be hard” were heard…and my heart sunk a little deeper knowing that all the wishful thinking and dreaming was doing no good, because at the end of the day, he was still going to be the same kid I brought in. It really, really, makes me wonder, if this is the best for him.
Not just THIS, this kindergarten gig. But this. This life, this style of living, this house, these people…this everything. Is it whats best for Josh? Is it fair for everyone involved? Did I maybe step into something deeper than I should have? Should I have given it more “Deep” thought?…and suddenly my concrete answers that “I am doing whats best for him” slipped away, and was replaced with doubt, and guilt, and second guessing, and wonder and of course…confusion.
I can only do so much. Go so far. Give so long. I can only go like this for a certain amount of time.
…and then what?
Will I be kicking myself (again) for not listening to the people who really know best? Will I be wishing I did things differently, made different choices, and pushed for different results? Is it fair for the kids to live like Josh is the only one in this house, and everything has to center in around him? Is it fair to Josh to have to live with someone who knows so little about what hes going through, and has no idea WHAT to do or give to him? Is it really fair to keep teasing myself with this false reality that there “Might be hope” when Ive already been told there isn’t?
Just how long do I go? How far is too far? When is it time to just call it quits, and give up already…because if its when it all gets to be too much, and if its time to give up when I don’t think we can honestly go on any further – then I missed the mark a long time ago.
I think back, to how far we have come, and just what things we have tackled…not just this past year, but in the past almost five years of Joshs life. I think of all the things he has been through (whether he knows about it or not) and I realize that there is a whole lot crammed into a few short years. There have been so many changes, so much chaos, and so many obstacles to get through…I think of all the time and effort that was spent to get him back, no matter what, and keep him here, no matter what, and then I ask myself if Im really going to allow one tiny little thing like this, forfeit it all…
…and I know, that given the right opportunity, the right chance, the right amount of pressure, I would most likely.
Even though I don’t want to.
Even though I really know that this is just another step, another hill, another chapter…even though I know that when it is all said and done (I hope) this is the best for him.
…and it worries me to think about when that might happen. Will it be tomorrow when I take him to school again? Or the day after when someone else takes him? Will it happen this weekend? Next week? A month down the road when all of this is all but forgotten, and there is some new and interesting curve to tackle…and whats going to stop me. Stop me from packing it all up and shoving it out the door. Whats going to stop me from saying enough is enough, and giving up on him. I hope that day doesn’t ever come. I hope that it never comes to a point where I cant talk myself out of a problem, and make myself realize that it is or will be ok…Im not the first one to run into problems and I certainly wont be the last.
Its just sometimes I cant shake the feeling that Im screwing up (again) and Im screwing up big time.
Filed under: Autism, Letting it out, The kiddos | Tags: Autism, Josh, Looking for answers
My biggest fear is that come tomorrow, I will drop Josh off and he wont cooperate. That he will ONLY show them the side of him that comes out when he is forced into situations like such, and that they will write him off the books completely, or tell me that again, there is no hope. My biggest fear is that he will be “Labeled” and not actually diagnosed. That he will be stuck with a label, in a box, for the rest of his life, with no chance to grow, or change, or reach his full potential. My fear is that no one will accept him for who HE is, and not what has been stuck to him, or what hes giving off as being him. My fear is that once someone gives him this label, that it wont be able to come off, and that like it or not that’s who he is. No more Josh. No more JJ or little J. Instead he will be known as “That kid” “The one with problems” “Autism” and other such things. My fear is that…
…and I could go on forever.
Listing fears, and trying to console myself with the thoughts that tomorrow really might not be all that bad, after all, weve done this for whats seems like forever. Its just another routine evaluation. Another step. Another therapist. Its nothing THAT unusual, infact, it seems almost, if I dare say, normal. Normal. To drag him in screaming and crying, to leave him and actually walk away from the door that is screaming bloody murder. Normal to pack up a four year old boy who hasn’t taken a bath for a few days, and wont put his shoes on because of some unknown fear, and haul him down to an appointment with a therapist who will peel him off of me so I can slip away, and listen as the crying turns into full blown wails, and quiet whispers of comfort are drowned out by the screaming from a purely terrified child who doesn’t understand that this. This right here, is for his own good. Because if that’s normal, I wonder what. Just what this world has come to.
Tomorrow at 2pm I take Josh in, drop him off, stop by the bank and come home like nothing has happened. But we all know that wont happen. Tomorrow I will take Josh in, and after spending 10 minutes or so of their precious time trying to talk the clam off of my legs, they will break him away and watch as he turns into a wild man, thrashing around, screaming and kicking. I will slip out the door, close it behind me, and listen as he screams, the only thing he knows how to do. I will walk away, and wonder just what kind of a person I am, to leave him in there like that. I will most likely hang outside for a few minutes, stalking the parking lot, and maybe even wander the halls. Kicking myself. Racking my mind. Looking for answers in the outdated magazines. Drinking coffee, and smoking like a chimney. Because I don’t roll like the other parents, and Josh isn’t like the other kids, and I cant just walk away while he screams behind that door.
I tell myself its for his good. That he needs to be seen by these people, that they need the one-on-one time with him, and him alone, without anyone else there. Ive told myself that he will survive, and after its all done, maybe we can watch the dump trucks. I tell myself he will be ok, and eventually we will get this under control. Control. The one word people seem to love these days. One day. I will have some of it too. One day I will be able to walk him in, and he will leave, willingly, and maybe then I will wonder just what I did to raise him to not even say good-bye. I tell myself its not worth stressing out over, that tomorrow will come. Tomorrow will go. That maybe he will cooperate, and they will see his smart, funny, side. The side that I know wont come out around complete strangers, but maybe, just maybe, he will show them hes not worth “Condemning”, atleast not all the way.
Someone said the other night, that I shouldn’t worry about this. This is so small on the whole scale of things, that if Im this worried about this…then maybe Im not right for this “Job”. To be honest, I never said I was right for it. I never thought I was good at it, or could actually do it. But I do worry…and I will worry. Because that’s how I am. I don’t like to see him like that, and I know that’s how hes going to be. I don’t like to force him into situations that are hard for him, but I know this is what he needs. I know it will be hard for him, and I know it will push him over the edge in more than one way, but I keep trying to convince myself that if he goes over the edge, then maybe, just maybe, they will be able to help him. Maybe, somehow, they will find it in themselves to help him, and not send him back out the same door he came in. Because that’s what he needs. That’s why Im doing it. That’s why hes going to go tomorrow, no matter how hard it may or may not be…and that’s why I worry. Because hes just that important, and I cant stop myself from wondering, and worrying, if this really is…the best for him.
It’s a small appointment. One that most people would go to, and not even look back. But its going to be hard, hard for him. Because hes going to have to face his fears, hes going to be pushed over the edge and tried in every single way, to push any button he has…because that might be what he needs.
I can just hope that one day, this will all be behind us.
Filed under: Autism, Letting it out, The kiddos | Tags: Autism, Josh, Looking for answers, My thoughts
After telling my mom about Josh, a decision I later regretted, I began to wonder if I even dared to tell other people about him. Wouldn’t it be easier to just say I didn’t know? After all, I really DON’T know. I don’t understand the in-depth, complex parts of autism, let alone how they effect him beyond what meets the eye. It wouldn’t be exactly lying, and eventually, maybe I could tell a few people, take it one at a time sort of thing. See how they react, and move on from there. I wondered if it would be possible to take Josh, and hide him away, just until help was found and he was able to go into a store without disrupting peace for all who ventured out the same time as we.
I started entertaining the thoughts of boxing Josh up, setting him on a shelf and leaving him there until the world around him came to a deep understanding of what its like to have a child with autism, and fears so great it keeps them from sleeping at night or using the bathroom. I wondered if I could somehow just protect him, make up for lost times, and keep him away from all the unintentional, hurtful words that can and have been directed at him…because even though he doesn’t talk, and he doesn’t say whats going on inside of his mind…he understands. He knows enough to understand. He isn’t stupid.
Over this past week, one of the things that has become obvious to me is that somehow people think that in the hour it took for one of the many therapist / doctors to inform me of what was “Up” with him, I was also informed of all the ups, downs, and in-betweens of autism. That somehow, now, I know more than I did before. That because he now has a diagnosis, I KNOW the things that I didn’t before, and I completely understand the things that made absolutely no sense to me before last week. This, however, is not the case. The only thing it has done is opened up more doors for Josh to get help, and realistically, that should be all that matters.
I said that last week, I piled all the books, papers, and research I had done on or about autism, into a corner and left them there. Which is where they still sit to this day. I don’t want to know any more. I don’t want to hear what a book has to say and that there is a percentage of kids who grow up to live “Normal” lives. I don’t want “Normal” for Josh. I just want him to be who he is, to be able to live his life to its fullest, without having to pay hell from everyone he meets. I don’t want that. But I don’t know how to stop it, and I don’t know if I can.
I know I cant keep everything away from him, and sooner or later he will come face to face with a confrontation of his own, and I can only hope that when that day comes, hes able to stand up for himself.
A few people Ive told took the information, looked deep inside of their minds as if trying to find that glimmer of hope and told me that their cousins brother in laws ex wife had a great nephew who also was “Like that”. Others, like my mom, said that it was a “Made up theory” to give parents a label, and something to blame for their bad parenting, while others simply wondered if it could possibly be that he was just an “Unruly child”.
When I told Madison and Dylan what the doctor had said, they were quiet a few minutes. Madison broke the silence by asking if he was going to die, and when I told her that no, this wasn’t a terminal illness like so many times before…she sighed relief and wondered then, what it was we had to be worried about. It was both a heart breaking and heart warming moment. Because at the same time there was absolutely nothing to worry about in her mind, there was the greatest fear that most likely will always be present.
Ive been told that I need to get a routine. Make some order, and stick to it…and while I know all these things are true, I have to ask how…and when. Because it always seems just when we get things figured out, straightened up, and down to a system, something else pops up, and were back to where we started. “Don’t let him rule the house” “Your taking the easy way out” “It doesn’t HAVE to be that way” are all pieces of well intended advice from numerous people this week…and while I appreciate it all, I have to ask the question “Then how IS it suppose to be?” I realize this isnt how it shouldnt be, but how…how should it be, because I dont know anymore.
…and while I know that a majority of his “problems” can be autism related, there are still other things, things that Ive been told he will eventually “Out grow” or “Over come as he matures” that I cant help but kick myself over…
There arent too many reasons why a four year old would be scared stiff of going into a bathroom. Not too many reasons why he would protest taking a bath, and scream like there is no tomorrow if he is forced into a situation where there is water involved. There arent too many reasons why some nights he simply cant sleep, and instead stays up all night screaming, and crying…and it isn’t because he needs “Structure” or “Discipline” he doesn’t need to learn how to “Self sooth” or any of those other things that people have told me is “All he needs”. Hes scared. Its obvious. I know why. But I don’t know if I will ever get over the fact that while he was in those situations, I was at home, telling myself that “He was better off there”. Believing that I was doing him good by letting him be there…where he belonged.
Josh may “Get over it” he may “Out grow it” he might? Even grow up to lead a somewhat “Normal” life. But I don’t think I will ever “Get over it” and I know I certainly wont “Out grow it”. Every night I sit up with him, watching him fight sleep, and wake up screaming…every time he freezes up, and starts to cry over something as simple as a bath, Im reminded of the mistakes Ive made with him…the things Ive done…and the things I havent…and I have to ask myself…am I really doing whats best for him now? Have I really changed all that much, or am I just pushing him further and further over the edge…
Ive been given another chance with him, am I screwing that up too?
This weekend I had to call my mom. To risk sounding like a spoiled brat, its not that I didn’t want to, its just that it seems more like a duty, or a chore rahter than something I actually look forward to. But Ive learned the hard way that if I don’t call her once a week, she shows up on the door step wondering whats up. Its easier to place the call, and get it over with, so this weekend, I bit the bullet, and called. While the kids sat a few feet away eating lunch I filled her in on the past week of life, what the kids were up to and tried to steer away from subjects I didn’t want to discuss with her. Like Josh, and his “Diagnosis” and all that fun stuff. Infact, I pretty much tried to keep Josh out of the conversation.
It wasn’t until I was about ready to go did she ask “What ever happened with Josh?” as if I had just dumped him off somewhere and forgot about him. I assured her he was fine, and watched as he threw most of his lunch at birds, people and passing cars…screaming every once and a while. I didn’t want to go into details with her, because honestly, I just didn’t want to talk with her, about that, right then. But she was going there, and before I had time to tell her I really needed to go, she was already diving head first into what was soon, another one way conversation.
She gave me her thoughts, opinions, advice, and so forth on “Difficult children” such as Josh, telling me that she knew all about difficult kids. After all, she did walk out when her kids were young, she SHOULD know. Not her words, exactly. But still. She went off on her rant about doctors, making money, and the traps that they lay for people with young kids, hooking them and bringing them in with their childs life on the line. I listened, and waited, knowing what was coming…and then she asked. “Did you ever get the results of his test back?” as if I had taken him in for a series of medical test…if only…IF ONLY it were that simple.
I waited a few seconds not sure how to respond, and then told her about the appointment. The doctors…and eventually, the final “Diagnosis”. She was mostly quiet, and listened for majority of the time, until I left a gap, and she filled it “Well, you don’t actually believe that, now do you?”. Throwing any chances of actually wanting to believe myself on this one, out the window quickly replacing it with doubt, and second guessing, wonder and guilt.
She spent the next 20 minutes giving me a debriefing on autism…telling me about the “Scam” and “Money making” scheme that doctors have come up with to prey on “Difficult Children” by placing an “Official label” on them, to give the parents – who are more than willing to do anything – some way to spend more money and feel good about it. When I didn’t say anything, she took my silence as agreement, and began giving me a speech to tell the doctors next time I met with them. It was about that time the spit started to fly and she really worked herself up. I told her I had to go, hung up and stood there a few minutes while my head spun so fast I couldn’t even think or see straight.
Its not that I really expected her to be supportive, its not that I was even looking for “Support”. I could really, care less if she thinks that autism is a scam, or hoax. I don’t care if she has opinions, or ideas, or any of that…infact, Im all for it. But what I didn’t expect is for her to take off on a rant, and leave me completely defeated. As if somehow I had made the choice myself to introduce autism to Josh…and Josh to autism. Maybe I had fallen into a trap, or something, and maybe I was giving Josh over to the doctors to “Crucify”. Maybe…
I don’t know.
I wont say I have completely given up, because I always tell the kids not to give up and I don’t want them to think that when things get hard, you can just…give up. But I will say a part of me gave up this weekend. I piled all the books and papers and research and confusing words I had tried to understand, into in a box and shoved it in the corner. I intended to talk to Joshs therapist this afternoon about getting him into some different therapy, and canceling some of his other “Unneeded” appointments. I had intended on setting up a time to talk with someone about where to go from here and getting some help to sort through things because I really don’t understand any of it…
But I didn’t.
Because I just don’t know now.
Im back to square one. Back to second guessing, wondering, and left answerless. Only this time, Im not exactly…looking for answers.
Ive given up dreams before. Ive given up the idea of ever living a day that wouldn’t be filled with state workers, and surprise visitors. Ive given up ever trying to turn this page and start a new chapter…so why cant I get over this? Why cant I just accept the fact that this is how it is, and no amount of trying to change things is never going to amount to anything. Why cant I just learn that this is how Josh is, and no amount of therapist, or doctors, or money, or…whatever, will ever change it.
Is it really just me who can accept this? Is it really just me that thinks there MIGHT BE HOPE out there? Is it really just me who is playing into this “Sick game”?
Its like Im wishing for something…something that just isnt there.
I lamely attempt to sum up, yet another week.
What happens:
If Im stretched to my limit, and its not over yet…
If Ive dealt with things this long, expecting things to break at some point, and the only thing that has broken is my hopes on ever leading a somewhat, normal life…
If Ive been asked all the questions I can answer, and they still don’t stop…
If Ive come to that point where I can simply not go any further…but we are far from “There” yet…Then what?
What happens when I reach the point of no return. The place I dread to be and yet there is no way out.
I wish someone could say what to do and how to do it. Because while I hate people telling me what to do, atleast then when things go wrong, I can say “Ah ha! Your fault, I always knew better”. Atleast then I would have someone to blame if things went wrong, but better yet, Id have someone who actually thought what I was doing was right…and not constantly arguing my case.
It seems like Ive reached that point where I want to please everyone. I want to make all the right moves because I want people to think what Im doing is right, but more than that I really want to be doing whats right for the kids. It seems that Ive reached the point where absolutely no one thinks what I am doing is right, and you know what? I think they might know something I don’t, Im just not smart enough to figure out what it is. It seems like everyone is sitting there, watching, just waiting until I screw up (because we all know I will) so they can say “Ah ha! I was right all along, you were wrong, should have listened to me”…and I can agree. Telling them that yes, they knew.
So what happens when I reach the point where Im tired of people telling me everything Im doing is wrong, that Im screwing EVERYHING up, that everything I thought was going ok, is far from ok, and the things I knew were wrong, well, they are so far gone there is simply no hope. I wonder if the next time we go out, someone will see us, or see the kids, and see that they are in color coordinating clothes (what that even means is beyond me) or they might notice Josh hasn’t had a bath for a few days, or that Dylan needs a hair cut, or that Madisons jeans are a size too small. I wonder if the next time Josh flips out in public if I will get turned in, because lets face it, that isn’t a far out thought.
What happens when I wish we could just slip away in the night, become different people, and restart, from scratch. Start over from the bottom up. What then?
What happens when I reach that point, and I crack under the pressure (because I never said I was good with this kind of stuff) and I say “Ok, forget it” and I give up all that Ive been working for the past few years. What happens then. Will the people who told me all along that I was doing things the wrong way, finally start giving advice, since Im following their ideas?
Its just. So frustrating. Im not saying Im giving up on anything. Im not saying Im going to quit trying, even though, right now, I really would like to. Im not saying that when things arent going so hot, and that no one really sees what Im doing and why Im doing it, that I have a clear view either. Im not saying I know what Im doing, and that other people don’t know best. Im not even saying that I don’t like getting advice from other people. Im just saying that…Ive reached that point. The breaking point. The point where I am ready to just quit…and even though I wont…I want to.
Im ready for it all to just be over with, and right now, I don’t care how it ends. Im ready for it to end, and to be left alone in the dust – because atleast then. ATLEAST I wont be told that Im doing something wrong – because I wont be doing anything at all.
Im not saying anything, really. Except that Im tired. Im frustrated. Im ready to give up any hope that there ever might have been, and start over. From who knows where. But since we all know that will never happen, I will get up, and carry on…continue doing everything wrong – because atleast that’s something I can do right.
Or rather:
Welcome to another edition of:
Josh, Autism, and Kindergarten.
Not that any of them have anything to do with each other, or, rather, they SHOULDN’T have anything to do with each other.
I was talking with someone I know this afternoon, they have a daughter, who will be three in a few months. Today, she said that she is signed up, and ready to go to head start this fall. It hit me in more than one way…from different points, and then it did a loop around, and hit me right upside the head, just incase, you know, it had missed something.
First off, I don’t have anyone signed up for anything this next school year. Didn’t school just get out? Why should I worry about that, now? Are they even signing kids up now? I wouldn’t know. I always allow plenty of time. No fear there.
Secondly, and I wasn’t going to mention this, atleast not here, now. But it hit me that Emmy wont ever be in preschool, wont ever go to kindergarten, wont ever attend a head start. I don’t know why, today, then, it hit me…I mean, there are plenty of other opportunities, I think it had something to do with the age. Her daughters age.
And finally, Josh. Because, oh my gosh, I havent even STARTED anything for him yet. Instant panic.
Its not that I have started anything, or havent wanted to start anything, or anything like that, its that I cant. Because while Josh is technically OLD enough to go into kindergarten, numerous people, myself included, don’t think hes ready. Im not trying to downplay him, or anything, but hes really not ready. Hes just recently been introduced into the school setting, a setting where he had one on one, plenty of time to adjust, and it really wasn’t that important…I mean, sure, its great that he learned about colors, and shapes, but to be honest, it was more about the…introduction of a school setting, that was important.
Today, we met with hundreds of different therapist. Not really, but it sure seemed that way. Josh did fairly well, until about ½ way through, we were in the middle of meeting with #3, and he broke down…I cant really say I blame him. We met with (and help me out, I don’t know the technical names of everyone, so don’t hold me to it) an Occupational therapist (??) another speech therapist, and someone who deals with kids who have been diagnosed with more than one problem (autism/PTSD)…which is where the black and white cards were laid out…and also, where Josh sort of, tripped over that invisible edge.
She said that its difficult working with kids like him, and that it takes someone trained in both areas to be able to help him. Of course, she said the correct name of the certain therapist, but it left my mind, because there are none of those here, in this town. The next best option is to get someone who deals with kids who have PTSD and also someone who deals with kids who have autism, get them working together with Josh, and see where things go from there. She also said that one of the reasons its especially difficult is because you don’t know which behavior should be contributed to which problem. His fear of water, for example, could really go both ways. Either he could have (and again, correct me, I could be twisting her words here) sensory issues which is common with autism, or he could have had something happen that when he sees/touches/feels water, it brings it all up in his mind…
Of course, it was more than enough information to send my mind into over load, and I all but forgot to mention kindergarten until we met up with his regular therapist. Where I mentioned something about checking into kindergartens for him, and he sort of stopped me mid sentence and said something to the effect of “Hold off, Ive got a few other plans for Josh before we send him to kindergarten” which is when I blurted out a long rambling sentence about the state, and requirements, and getting the kids taken away and blah blah blah, all of which really had nothing to do with anything.
He set all fears aside: The worse thing that will happen is hes a year older than the rest of the kids in kindergarten if he does indeed, go next year instead of this year, or he might just be able to pass it up altogether.
It sort of set my mind at ease. I don’t know where it came from, but I had it set in my mind that he HAD to go this year, no matter what, I mean, hes not ready, but he had to go. Somehow. I wasn’t sure how. I had to find out how…and so forth.
Its been a long day.
…and Ive lost my cool more than once. Ive yelled at one too many people, and apologized to the kids, one too many times, I drove a little too fast, and got there a little too late, I hit my head too many times, forgot a few things, and remembered others, said enough “bad” words, raised my voice a little too much, and caved in when the kids wanted something less than nutritional, for dinner…but we all made it home, in one trip…
*Confessions of horrible “Parenting” ahead Advance with extreme caution*
Tonight for dinner we had “Dylans choice”: donuts and juice. There has to be nutrition in there somewhere, the kids were bouncing off the walls for an hour.
Last night, we had cold bagels and fruit. Madison’s choice.
Tomorrow, Im thinking we will have something to the effect of frozen peas. Which would most likely be, Josh’s choice. The guy could seriously live on just peas. Don’t ask. I don’t know.
Wish us luck. Tomorrow we go in for another round of therapist vs. Josh. I check in with my lawyer, and see about adding a second job to the pile.
If I were that optimistic person who Im famous for quoting, but not so famous for listening to, I would say something to the effect of: Tomorrow, We can try again, tomorrow. But since Im not, I will simply say that if tomorrow is atleast 1/2 as bad long hard good as today? I will be thrilled. Totally, thrilled.
