Freak Parade

Like a ferret on meth.

first it bleeds and then it scabs

To say that my world has been turned upside down would be a bit of an exaggeration…..more like it has been given a mild shake. A tremor. But that tiny tremor has sent out a constant stream of ripples, causing major disruption. I suppose, as with anyone on the autism spectrum, disruption is easy to come by. It doesn’t take much. Coping skills that take years to develop can slip out of reach, leaving me frustrated, watching myself falter.

This particular period of disorder has caused me to do a lot of withdrawing. I want nothing more than to sit quietly and listen to music. I am constantly agitated. Stims that I have beaten into submission unless I am alone are protesting loudly at being ignored. I would gladly sit in my chair all day and speak to no one. Of course that is not really an option when I have a family. Kids that need me. Homeschooling to do. Work to do. A husband that would probably like a wife that actually could have a conversation or two. This has brought up some interesting things for me. I know how difficult it is to live with my son at times, due to his Asperger’s……but it has become painfully clear how difficult it can be to live with me, due to my Asperger’s. Would seem like a no-brainer, but I had become so comfortable in the skills that I had “mastered” that I assumed that others around me were as comfortable. And usually, they are. But not always.

A few things have happened lately that have reminded me that no matter how hard I work, I am still different. That is just the way it is. I say it all of the time in regards to my son….that I can not expect things to be easy or “normal” because they are not……and yet it was a bit humbling to have to apply it to myself. But different doesn’t mean lesser…it just means different. I just have to continue learning to live in that difference. Make it my own. But sometimes it is easier said than done. Sometimes being different is a bitch…….And a lot of times it makes people think I am a bitch because they misunderstand why I act certain ways. That is a rough one. No one likes to be misunderstood. It has been a hard lesson for me to follow the advice I give to my son…..if they don’t bother to try to understand you, then they are not worth your time and effort. I have been blessed to have people come into my life that take that time. When I am reeling from experiences with those that don’t, I am so thankful to have them to turn to. But sometimes I just have a mess that I have to work my way through on my own. Tricky shit, this autism thing. Or maybe, perhaps more accurately, it’s all of the damn “normal” that is so tricky.

Collateral Damage

The Girl has a friend over. They sit in a nest of pillows, giggling, singing, whispering. They eat Cheez-its out of the box nestled between them and talk about being rock stars. And I can see them from my chair, dancing, cartwheeling, and I can hear the laughter. And I am thankful for this one bit of normal in my daughter’s life. Then my son, peeks his head down from upstairs and makes a funny noise at the two girls, and they all dissolve into loud belly laughter. And I am thankful for the one bit of normal in his life. Normal brother-sister interactions that most people would never give a second thought make me stop and exhale.

The Girl doesn’t get to see a whole lot of normal behavior from her brother. She sees the yelling, and the anxiety, she feels the sting of his words, she sees me cry. She knows to come whisper it into my ear if her stomach hurts, so that her brother does not hear and start to panic. She learned this at 5 years old. She runs and sobs when he has his meltdowns, and takes the brunt of his criticism. She sits alone quietly in the waiting room of the psychiatrist’s office each week. And yet, she sticks up for him when he is being lectured and would give anything to be granted access to his room, or asked to watch him play PS3. Then she will break down…”Mom, I just don’t want him as a brother anymore. It is too hard. I just don’t want to live with him anymore. It is not fair. I just want a normal brother!I hate his Asperger’s!”  And who can blame her? It is not easy, I know. And she is so kind and so easily wounded. And I worry every day that she will be broken somehow, between her brother and myself. That she will look back on her childhood, and these moments of “normal” will stand out to her as much as they do to me, because they are so rare. With all of my own fumbling through, can I help her to deal with her brother? I know I have to try.

She has asked for her friend to spend the night this Friday. There is nothing about that that says fun to me. I get all anxious when people are in my house, and I don’t like my routine messed with. I will worry about keeping The Boy from doing anything that could scare The Girl’s friend. Calm, please. Please no meltdowns. But I will make popcorn, and watch their dance routines, and let them eat ice cream at midnight. I will let them stay up late and only shush them a little. I will step outside myself, and I will give The Girl her normal….one sleepover at a time. She deserves that.

I’m on the wrong side of the damn bridge.

The Boy turned thirteen this month. Thirteen. And any time that I was able to spend, sitting, turning the fact that I was the mother of a teenager over in my head, was short-lived. Parenting The Boy does not leave one with much time or energy for thoughtful introspection lately. In fact, it doesn’t leave much energy for anything. I find myself, at the end of the day, feeling like I have gone twelve full rounds with a heavyweight. Weary, bruised, defeated. While parenting him has always been difficult, at least I understood him. As it stands now, I have no idea what he is thinking or feeling or how to help him. He has this anger and self-loathing that can bring me to tears. What has happened to my baby? The meltdowns, that plagued our days when he was much younger, are back again, only with the size and anguish of a thirteen year old behind them.

Every rough day we had in the past, I would tell myself, tomorrow is a new day, a new start. He is young, we can move on from this, and he will hardly remember how badly you’ve fucked this up. But I realized that I am thirteen years into those new tomorrows, and still failing miserably. Only now, each failing is filed away, and held against me, becoming a new brick in the wall he is building around himself. In his hardest times, he always cried for me…..and now, in the darkest times,  “just go away!” or “leave me alone!”  has replaced his calling for help. The autistic indifference that has grown familiar, has been replaced with angry words and hostility. And that makes it that much more difficult to make it through the day. It just does. Yes, I am a parent, and should have the bottomless, selfless ability to raise and love my child, and expect nothing in return…..and I do, as much as a human being can… But…I’ll be honest, it stings. And makes waking up to face another day of it that much more difficult. I never got the hugs, or the I love you’s, or the pictures drawn for me, and I was ok with that…..but the staying awake until 7 am with him for 8 months, the screaming, the meltdowns, and the constant battles….they become a little rougher to push through, when you are greeted by nothing but a confused, misplaced anger.

And I don’t know how to help him. And that is heart breaking. Experts that throw out pills and scary words have only gotten us so far. He is a boy, after all, and not a diagnosis. His brain is real and is his own, and not just words in some psychiatric text book. And his heart is real, too. Who will help heal that? And how does such a small boy get so very broken inside? You hear all of the time, parents say that all they want for their children, in life, is to be happy. And they usually mean they will be happy with them going to community college, rather than medical school….or choosing to marry someone the parents may not have chosen for them……But I wonder…….How many parents really, truly can say they mean nothing more than to have their child find some peace from tempest that swirls within them? Where are those parents? The ones that stumble, dazed, though the days, trying to make a way for a child that has no idea how to make a way for themselves, and faces so many obstacles, that the journey can exhaust them before they even begin? I know they are out there, and that both comforts me and crushes me, as I would not wish this on anyone. There has to be someone standing on the other side, though, right? Someone that has been through hell and back, and can say, “Look! We did it. It can be done. Yes, it is going to suck getting here, but it can be done. Just put your head down and keep going.” They have to exist, right? I know they do. I have to remind myself of that. Just like I need to remind myself that someday, The Boy and I are going to be standing right there with them, saying, “Look! We did it.” I have to believe that.

I Mean No One Really NEEDS Two Ears, Right?

“Am I perpetually unhappy, or am I perpetually inspired?”

So, I read that on this blog the other day, and it kind of stopped me in my tracks. Those words pretty much summed up a question I have been asking myself for as long as I can remember. I certainly don’t feel like I live a life devoid of happiness….but I know I am in a perpetual state of discontent. It has taken me a long time to realize that that can be an okay thing. I mean, if I were all happy and satisfied all of the time, would I have any drive to explore new options, create new things, reinvent myself, or pursue a new dream? Would I even have any big dreams?  Over the course of my adult life, I have started more projects than I can count…including making jewelry, trying my hand at writing, and, of course, photography. In a lot of cases, I have fallen flat on my face, but something keeps me coming up with new big ideas that I just have to try. And I have managed to pick up quite a few things that I enjoy doing along the way, which is a cause for happiness, not unhappiness, right? But I would be lying if I said that my bouts of creativity and inspiration do not coincide with periods that I feel…well…bad. Any time that I am stressed, or anxious, or depressed, or overwhelmed….those are the times I feel most compelled to create something. The work I create during those times is also usually the work I am most pleased with. I am not sure that emotional turmoil is a requirement for creativity, but I imagine it is no coincidence that art and madness are so often linked. Van Gogh, anyone? And while I don’t plan on chopping off my ear, or any other body part, for that matter…..I know that with all that I have been struggling with lately, my hands have been itching to pick up my camera. (Do they make an ointment for that?) (and while we are on the subject, how gross of a word is “ointment”? I hate that word. Oint. Ment. Bleh.) So, while I spend my fair share of time in the shadows, I am not sure I would trade away the desire to create, for a life of living in the sun. Oh man, how pretentious does that sound? But, for right now at least, it is true for me. And my camera is calling.

Bad Analogies are the New Black

Since I am not sleeping much at the moment, it has given me lots of time to think. You know what is not good? Thinking too much. In the quiet, sitting like a lifeguard, observing , and waiting to dive in at the first sign of distress….there is not much else to do. I make attempts at being productive, but things are just too damn big right now. This whole thing is too damn big. People tell me all of the time that God gives kids that have unique needs to the people He knows can handle it. I know they mean well, but that is the biggest load of bullshit I have ever heard. I have never been so in over my head in my life. I am not, in any way, specially qualified for this. I struggle along because I love my son and it is what needs done. It is like being pushed into a pool when you don’t know how to swim. You thrash and kick and hope like hell you don’t drown. Things are bad right now. Really bad. People say, “I don’t know how you do it.” Know what? I don’t either….and in fact? A lot of times, I am not. I want to scream and yell and break things. Curse like a sailor and shake my fists at the sky, in dramatic, Hollywood movie fashion. At some moments, just putting one foot in front of the other is as good as it is going to get.

The paradox in all of this? I was watching a show about an 11 year old boy being diagnosed with Asperger’s. His parents took the news like they were told he had some fatal, incurable disease…and I got angry. Because as difficult as times may be right now…as difficult as they have always been…..it bothers me to see someone view autism that way. Their son was no different by the uttering of those words by the doctor. He had the same struggles and the same strengths. He had the same mind and the same soul. Nothing changed in him. I know now, that the day I got the diagnosis that my son had Asperger’s was an Ah ha! moment. Nothing more. A name for the difficulties and the differences that had always been there. And there are difficulties. I am not going to even try to deny that. But….while climbing the mountain with a heavier pack may make for a more trying journey, it does nothing to spoil the view. In fact, bending under the the weight of the load may allow you a unique perspective that others will never see.

“To be nobody but yourself in a world that’s doing its best to make you somebody else, is to fight the hardest battle you are ever going to fight. Never stop fighting.”
e. e. cummings


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