Why?

There are so many days I ask WHY? Why am I in this life? Why am I trying to blog about it? Why do we have to live like this? Why can't he get it? Why can't he act his age?Why can't everyone else understand what we go through? Why can't we help him more? Why can't I win the lotto? It is the ever present present why me, which for the most part I really don't go there. Because WHY? What is the point? I already got the why us part...clearly. The 100 people who have actually told me "wow, I could never do, handle, live with that" pretty much make it clear. And really, my family is amazing, we are chill, laid back and pretty much roll on with the added strife of a special needs child. Most days. Erma Bombeck has a pretty spectacular essay about the Why and WHO gets these amazing kids...I would like to tip my hat to my favorite mom of the seventies other than my own and say, you got it. You get it and see how wonderful we parents are in spite of our sighs, cries, and whys.
The other day in a parking lot I witnessed a man who just totally didn't get it and made it worse. A young mom leading her incessant tantruming child out of Walmart, handling the child in a forceful but consistent way. Borderline of what is acceptable mom behavior. I looked and knew by the repetitive tone of the child, the child's complete lack of respect, the mom's calm demeanor in spite of being firm, the sheer exhaustion her face and the been there done this everyday expression of what was going on. I knew I couldn't help her. I could say, hang in there, you go girl, but really in that moment, she doesn't want that, she wants her kid done and in the car. So, the obnoxious 40 something man yelling at her and causing a scene about the way she is handling her child was completely not helping. He was threatening to call the police and have her arrested. Really? The mom handled it with more grace than I usually do. I ignore and seethe later. She fired off a comment while walking purposefully to her car child in tow, "Have you ever heard of autism?" I thought yes in my head, and I have lived your walk, and have just had to do a similar walk, even though my child is now ten years older. I have spent 10 more years than you living this. The good news, we are all still walking. The bad news, it has been such a hard walk. I know that man has heard of autism. I also know that guy has no idea how autism presents itself everyday all day to the parents of these 1 in 63 kids.

The unpublished drafts are now available to those few that follow.

I stopped this blog because it was hard.  And the years that followed were harder.  But today I was reminded that so many of us are still out there and struggling with stuff that quite frankly people just don't get it.  So here is a few more posts of angst and affirmation. Oh...and I might turn them into a book for this kid.  And give it to him when he is 30.

If you can’t accept us for what we are, then you are not in. We have a child with special needs. I would love to say that just means me and my husband, who have both decided to weather the terrific storm of it all out after artful/awful means and considerations. However, just because we are in is no means our friends and family are in; now I know this. I get it. I would never choose us as the play group you are part of and involved with on a daily basis. We have issues, mainly my number one son. Not us so much, we are easy, breezy, and carefree, until it comes to number one so; at that point we are are uptight, worried, and upset. Because tht child tends to not go along with flow, requires constant attention, and supervision. We have a perpetual two year old. However, he is twelve and acts like sixteen, rude, obnoxious, and all around horrible. Luckily for us, we happen to have some friends and family who have stuck by us for years on end. They get it. They have read the books I asked them to read. They have explained to their children why my son is so different and very often appalling. They have supported me and my child over the last ten years. They have given their all to make us feel included and welcome even though I know it is difficult and a choice you make for your kids. It is the people, sometimes even family who choose to shun you and yours that make me sad. They just don’t get it. They don’t ask for books, and above all else, they do not want their child exposed to yours. Even if they say they support you. Maybe they do, but they don’t want to be around you. Clearly. The disease isn’t catching. But it sure feels like it when your own family is afraid.

My Favorite People

My Favorite People have a lot in common. Not nessecarily with me, but with the people I love. My favorite people love my sons. They get them. They love them unconditionally. They rejoice in thier endeavors, tell them they are amazing, and also support me in parenting them. They have the unique view of seeing the positive and the future. I tend to only see the cluttered, mess of the normal day.

In high school, my friend Michelle and I would write numerous notes to each other. One constant of the notes was a roller coaster we would draw with stick figures. Up and down our stick figures would ride in small boxes. Their arms were usually up and we would draw big oos for their mouths or occaisionally their entire bodies would be barely hanging on and flying off the carts. And yes, sometimes, the carts were empty with a small figure climbing up the wood lattice. High school was tumultous. Thatwas the point. Every day was a new drama or situation, but we were on the ride. You really can't get off. It is called life. For most people the drama and the roller coast ride subsides for the most part. For the parent of a child with special needs, the roller coaster ride really doesn't end. There are definitely moments where you feel like you are on top of the world and you are doing what lots of people can't or couldn't. You are taking something out of control and feeling excited, energized, and happy about the ride. Other days, you are climbing so slowly uphill with no end in sight, you just want to get off the ride and be done. It feels like it will never end and you are going to be stuck or worse, you are going to fall. And perhaps not ever get up. You will be trapped in this state forever. But then the law of physics kicks in and a body in motion stays in motion. I am a tad bit guilty of feeling overwhelmed and stuck, and sometimes hopeless. However, I am happy to report, there is always a new bend, turn, or even a hill that will get and keep you back on track so eventually you can enjoy the ride even if the next drop is around the corner.

Apparently my husband and child have watched a video of "Best Practices"http://www.thisamericanlife.org/radio-archives/episode/458/play-the-part?act=2, in it the husband records best practices in order to get along with his wife. My DH has decided a notebook of Best Practices would greatly benefit our son. Apparently, the first lesson learned by said son is "Don't Mess With Mom." Duh! Seriously? At what age do most kids and husbands get this message? I am pretty sure it is at 2 not 12! I also must admit, I am a mean mom. Get your ass in gear and we go. I don't even ever swear, ask anyone, it is just implied in my tone. I will fully admit I swear often under my breath and just to me. Often. OK so back to my post: Best Practices. It is really easy. All you kids that want a fight, stop it! We, the people that love you, want to love you in the easy way it was designed. Stop being disagreeable, stop being defiant, stop being in the way of yourself. Let some adults help you. Especially the ones offering you advice. Listen. You need their help. And they need your unique perspective.

It is hard not to be upset by an Asperger's child's behavior. Why? Lots of reasons.

1. It appears selfish.
2. It seems manipulative.
3. It is usually extreme.
4. It appears disrespectful.
5. It feels horrible.

But the catch is, it isn't their fault. It is their wiring. It is their body's way of dealing with a world seen differently. I need to remember this fact, always. I need to never forget it even when their behavior that isn't so nice to people has me upset.
My child does not have crutches, a G-tube, or braces. He looks and acts like a normal 'tween. Totally. No offense, (as he would say in his Tween-speak), but he isn't. It isn't fair to treat him like a regular student, when he can't do the work load. It isn't OK to expect him to act as if he cares about others, when he just doesn't. It isn't OK to expect him to do anything, except what he wants to do.
He will do those other items to for others sometimes; but only if he thinks he gets something for it he wants. As for school, there is really no reason to do any of it in his mind, but he understands as part of the rules of school, you just do it.
From the mundane to the really important, it is I who must internalize how my son thinks.