Putting Them First

God gives me signs.

As eager as I am to get things rolling with my pending graduation (September 15), I think I need to slow down. I had planned to get another job to complement the aftercare position at my son's school (where I can spend time with both of my children instead of getting a "real" job and missing them the entire time) when Eli is gone in the mornings to preschool. Moving on with my goals, I've been relentlessly stalking the local library system for any job with 20 or less hours per week so that I could get my foot in the door. Once I graduate I don't want to waste my time sitting idle.

However, Friday I got called into Eli's summer camp at the YMCA to come get him because they couldn't calm him down. They said he kept saying "I want my mama".

Want or need? Who should judge if it is a want or a need, and if it is only a want is it that horrible to give him what he wants just in case it was what he really needed the whole time?

As it stands, plans for fall include 5 days a week in a preschool class for autistic children in Lansing, and that's a lot for a four-year old. He attended this class for four months of the school year this last year, most days. If he wants to stay home, I will let him-just like I did last Spring. But If he comes back with one bruise on him (as often happens with special needs children), he's out. I have zero tolerance for that bull#@$% and I get emotional when I read stories involving murder, rape and abuse of autistic children. I need the freedom to be able to support him how he needs to be supported and be vigilant to prevent any of this from happening.

Sometimes I feel like I'm not sure what to do, that I'm making too many excuses and not doing enough. But then I get that sign. And I know that it's God's will, and not my indecision or haste getting in the way.

The Scapegoat...

Parents get so angry about the disorder their children cannot help having and reacting to. Do you know what it feels like to be a teenager or adult with autism? I do. I’ll tell you all about it. I am autism. It is in my genetic code, in my blood. When someone is angry at autism for the inconvenience it places on their life, and it does, in fact, place a huge inconvenience, how do you think the person with autism feels? Well, you are angry at them. They are the problem. They feel guilty and lonely and sad. They are the living embodiment of a scapegoat. It isn’t vaccines, hormones, or the economic condition. It is in the DNA. You are angry at something they cannot help being. It’s like being angry at the color of your skin, or at a tic. And yes, I have tics. I kick and flail my arm. Haven’t seen it? I’m too busy hiding what inconveniences everyone else….busy wrapping my life around others to be convenient. Do you want autism to rule your child’s life? Stop forcing them to accommodate you. Accept them, let go of the anger, and do what you do with love. I’m not advocating for no treatment. Everyone needs therapy. I have flourished and with various therapies both structured and unstructured of my own rendering. Some people cannot even tell at times that I am autistic. But is that to appease them or myself I now wonder?

Excessive Force without the Trauma

The only way to effectively learn socialization skills is to jump in and just do it. I hate the feeling in my stomach, the gnawing knot of constant irritation which I feel each and every time I make eye contact, or even when I try to avoid it because someone else is gazing straight at me. But there are things I just need to accomplish and I cannot take any more time off to search for myself and avoiding what’s inevitable. I’m throwing myself out there. Starting now.

Today I sat down on a towel-like looking blanket spread across the grass which had alternating stripes of yellow, green, and fuchsia that captured my interest. I tried not to stare at it too much, not to analyze the pattern like I wanted to do. I made some eye contact as I sat next to the person who I have been steadily forcing conversation upon, and struggled to find things to say or acceptable things to look at other than eyes. Usually I rehearse things a little more…I decide where I will sit, who I will talk to, what I could say and what I can look at or distract myself with when I cannot remember any of these things. But the need to do this has decreased dramatically and things have been actually going quite well for me. I have chosen to socialize somewhat exclusively with other parents from my church. Those people that seem inherently kind, are good role models, and are constant in my life. They make me feel….good. And happy.

This Saturday is a “coming out” party of sorts for myself. I chose one of the less annoying types of direct selling (Lia Sophia jewelry) to take some of the focus off of me, but I have to say with every RSVP I get, I get more ridiculously excited that people actually like me. This is more than I could have ever hoped for…

Games

I spent much of my time around those who did not push me away just to learn from them. Older cousins, siblings, aunts, uncles, teachers were pretty accommodating….perhaps they never realized the differences in me. Honestly I preferred their companionship and couldn’t understand why I had to interact with those my age outside of the structure of the classroom. Some were friendly, encouraging, some thought of me as a project.

Those who did not push me away become my objects of observation. I had heroes and villains in my life, although I did not always know the difference until it was too late.

One such person was Hillary. Hillary was so very interesting. She was funny, outgoing, and had no problem making friends. However when she grew bored with her life she decided it was time to wreak havoc on others. I was probably third in line subject to her malice, but for some reason no one ever really talked about what she was done or what she was capable of, so she came to me without warning.

I was 11 years old when she convinced me to run away from home. I don’t even remember what she said to convince me to go with her, but looking back it was just another game she played to keep herself occupied. Autistics are in a peculiar position, not really being able to lie themselves, they cannot easily see another’s lies. This can make us very gullible. Furthermore, we can seem so mature with our adult-like language and analytical skills that parents tend to not worry about any possibility of irresponsibility. The lies she told and the manipulation she had over me had me wandering our small town at 3 in the morning on numerous occasions before this last incident…against all my better judgment because at that age you really don’t have any.

Closure brings itself to your door very rarely, but when that happens I think it's more for their benefit then yours and can be entirely selfish. Reiterating how much you've changed doesn't change the fact that what's done is done and it cannot be changed no matter who you are now. Thinking you can leave a mess in the wake of your tornado-like existence, ruining everything you touch and then saying sorry is not going to pick up the pieces. 15 years is a long, LONG time to contemplate all of what has happened and you cannot undo it at your will.

My Rock My God.

I miss a lot of things in my life due to this invisible condition I have, that most people like to pretend doesn’t exist. I missed my son’s kindergarten graduation today…and as I sat completely torn apart, unable to move to the door, I was growing more angry with myself by the minute. Writhing in pain of my inability to shake off fear and illness, I felt worthless. I cried a mountain of tears in frustration and mental anguish. How can I let myself freeze like this when I am so obviously needed? Do I not have an instinct that overrides all other conditions?

But I know how it is when I push myself too far. I would rather not let myself be consumed and turn into something I cannot control. I have worked so hard to cast off all that sensory irritation by preventative measures no one could even begin to imagine. I only want to be a good mother where I can use that soft voice and not feel the need to push them away when they become affectionate. When I quit listening to that optimistic voice in my head saying “You can do this!” my life got so much better. Their lives got so much better. It is better to recognize when I can’t do this. It is better on a myriad of levels.

Desperate, not wanting to let my son down twice in one day, I tried to push myself and find some sort of rock to hold onto so that I could do what was needed to be done. For autistics, we need for ourselves a support system. Mine is heavily dependent on my husband who can be the constant thing when everything else is changing and overwhelming. Luckily, I am no longer too proud to admit when I need help and my help arrived so that I could be the mother I wanted to be today. Proud and happy with tears in my eyes as my son danced across that stage like he was the only one there. And I was the only one watching. It was a moment I am so thankful for God to have given me the chance to make new friends that can help me be the mother I want to be and accept myself for who I am...even if I cannot sit alone in that audience.

(V for) Vendetta

I was 19 when I found the love of my life…and also when I had found for myself a mortal enemy bent on destroying me. It came from the most unlikely of places…

Six years later, an image burned in my brain as my to-be husband and I were at our rehearsal dinner, at the altar practicing our vows and I looked out to see her back to me. Her face turned to the side, fidgeting in the pew and looking anywhere but at the front of the church with a look of annoyance blatant and obvious. Even up to the day before, she didn’t want this to happen.

Fast forward to now. Why don’t I ever get invited to anything? Why are there plans for parties and showers and things that never reach my ears? Why is it I have never met his family other than the immediate grandmother, aunt or uncle? Apparently I sat right next to members of his family to the one thing I did get invited to and never had a clue. Are people too ashamed to acknowledge me?

I’ll admit I’m a loose cannon. You never know what to expect from me…neither do I really. Due to events beyond my control, I have been permanently placed on the defense…my way of trying to prevent the repetition of pain. The source of this pain is constant, throughout my entire life I have been ostracized and belittled, and until recently everyone claimed to be blind to it. My defensive nature I think made others assume I was partially to blame. I don’t know and I really don’t care anymore: there’s no reason to point fingers back in time. Can you blame Dr. Jekyll for Mr. Hyde?

I hit the reset button when I accepted the diagnosis…but so many others are slow to reset it themselves and get to know who I really am. That is, who I am when I’m not on the defense. I have found forgiveness from many people I never dreamed possible, many things for which I have found atonement. Yet there are so many others out there that do not care to atone and forgive. How hard this is to let go.

Making Friends

It's kinda like dating. A few folks I've met in my kids' school I've found on facebook and added as a means to speed up the "friending process". It seems like a sheepish, and easy way to find out if you have anything in common, or as a way of warning a potential friend about my social shortcomings so that they might be more patient with me. I give verbal warnings as well, but I feel like I'm constantly clutching my disability as an excuse and it might get on people's nerves. But it's all new to me too, especially the part of me claiming the label, thus adding even more to the awkwardness of it all.

Unfortunately, I feel for many the window of opportunity has passed for moving things to another level, like there is an expiration to escalating such friendships. If I don't move things to a new level after a few months, then I've lost the opportunity I think. I've lost a few opportunities this way because I get intimidated...unfortunately knowing me, it can take a year or more (usually more) to get to any kind of comfort zone to socialize outside of structured settings.

And then there's the disclaimers. Being friends will mean limited eye contact and conversation because of the inability to do both at the same time or process sensory stimuli properly...limited social abilities and seemingly rude and empathetic responses...quirks that will embarrass you....

It's too bad when I say off the wall stuff without having these disclaimers available for others. Nobody's perfect, right?