Wednesday, November 3, 2010

Timmmmmme Is Not On My Side . . . No It's Not ...

I have two kids on the autism spectrum. I talk about it a lot. It's never been a secret; I actually don't have many secrets. Everyone has a few; and this girl does - just like everyone else. However, my secret bank has a low balance because, as we all know, I just say what I say and tell what I tell and that is who I am. The secrets I do have are not anything that anyone would find funny, amusing, or useful; therefore, I keep them to myself. Hence, the secret designation.

Besides, who really wants to hear about when my friend, Joel, and I (at the ages of about 7 and 5) used to hide behind parked cars on my street and throw dog food at passing vehicles?

See? You don't want to know my secrets. They are deep, dark, and very incriminating.

So. Two kids. On the spectrum. It's no fun, but as they say these days - it is what it is. But I'm here just to say out loud that this life I have as the mother of kids on the spectrum keeps me from being able to adequately participate in other, useful areas of life; therefore, I rely on people around me. I trust those around me and hope that they understand that I am not lazy or apathetic, just emotionally overloaded.

I feel the need to say this because, on the morning after mid-term elections with so many talking about the results, I feel like a very intelligent idiot. I could not tell you what candidate stands for what at this point. I cannot tell you that I'm glad or mad this person or that was elected or not elected into office. I am completely mortified saying this; and I know it makes some want to throw tomatoes at me. But I'm just being honest. I could keep it a secret, but I would rather use this opportunity to explain something that may open up a few to the reality of special-needs parenting.

First, this disclaimer: I am not speaking on behalf of special-needs parents everywhere. I know that a good majority of special-needs parents are very able to deal with all the issues they must deal with as well as become intelligently informed about the candidates representing them. In fact, many make it a priority because the candidates representing them have some say in issues that directly affect special-needs families. So, just to be clear - this is my experience, and not meaning to be representative of any other special-needs folks but myself. This doesn't even include my own husband. Just me.

So here it is. I have two boys on the autism spectrum; one diagnosed at two-and-a-half with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), and one diagnosed first with ADHD at 9, then a mood disorder at 10, and finally Asperger's Syndrome at 11. It is a rough ride around here. Sometimes we're on top of our game, other times we are struggling just to keep our heads from exploding. This is the reality of our family.

I am the kind of person who, when faced with something I'm unfamiliar with, researches the topic to within an inch of its life. I need to know all I can; talk to whomever I can; find good, knowledgeable people and use them. I do not sit idly by and let what happens just happen. I will do all I can, in my power and within what is reasonable, to navigate toward the best possible outcome. And when it comes to my boys, you can multiply that tenfold. I'm not saying it always works, and I'm not saying it's always the most positive process. But I am a mother. And being a mother, to me, means doing everything that falls within what is feasible to help my boys overcome their challenges.

This takes time and a whole lotta energy - physical, mental, and emotional energy that must come from somewhere within me. We all have an energy bank, and every person's is different - just like our financial bank accounts. You earn only so much, and then there's only so much to go around. Some have unbelievable amounts and can pick and choose at whim what they want to spend it on; others have incredibly limited amounts and cannot do what others are able to.

I believe I'm somewhere in the middle. I don't think I have nearly as much as some people I see who have special-needs children. I see them deal with their children, work tirelessly in their favor, then spend their spare time working endlessly for the cause that has wrapped its wicked hands around their child's life and put them there in the first place. I am in awe of these people. Jane Grimes is one of these people. Look her up - you will love her instantly.

I feel I have a lot to give and spread around, but I also have a big budget that takes it all up. And - here it is, finally. One of the things far, far down in that budget is researching and knowing about mid-term election candidates. I'm sorry. I really, really am. I want to be a good citizen. I want to be informed. But this is one thing I'm relying on people I trust to help me with. People who I know think the same way I do and are parallel with me on issues. Because here is what I know about myself. If I choose to research and get to know the candidates, I will - again - do it to the fullest extent. That is how I do things. I will not stop at names and what they say they stand for. I will spend inordinate amounts of time to come to conclusions. And this is time and energy I do not have to spare right now in this season of my life.

Let's just say I'd be putting it on my energy credit card; and I would run up unbelievable debt. So I made a conscious choice. I cannot and will not compromise the time I am needed right now to deal with my boys' issues at home and at school (and it is daily) to become more informed about candidates. It's just the choice I have to make right now. Right now - when one of my child's issues are over. the. top.

So there. Secret's out. Or was it ever a secret? I feel bad and stupid this morning and just needed to tell why. Because that is what I do.

image from Indianapolis Times blog

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