9.16.2009

The Tears.

Well, you already know I am dramatic, so you had to sense a high-feeling overflowing emotional post didn't you? It's okay, you can roll your eyes at me in private and I would totally understand. I know when I am in the middle of figuring out my feelings they seem like tidal waves at times, which is why it is enjoyable for me to write about them. They temper and mellow, but by then I lose the desire to write. So here is the ugly 'before' captured so the 'after' shot will remember my overly dramatic self and give her a playful slug in the arm.

***

So the tears. Why the tears. Why the greyness inside with a fiery cocktail of emotions about Zane and his shiny soon-to-be little tag?

It's a big horse pill to swallow. It's hard to choke down the fact that things are different for him. And are going to be for a while, possibly forever. I thought I was doing it all wrong somehow. So I kept looking at everything I could have been doing better as his mother. For 3 years. Finding holes in my effort, painfully aware of my every single imperfection. Surely it's my fault he is off with his behavior, social norms, etc. Surely I didn't schedule enough play dates. Or perhaps I spent too much time reading blogs? Or maybe that first year with little to no television actually did him wrong? I thought I just needed to read one more behavior modification book and try one more reward chart and work harder on my patience. I thought it was all me doing it wrong. Or so I hoped. I have been asked a few times if a diagnosis or 'answer' made me feel better. Some ways it did. But mostly it broke my sail. It sunk my boat. It was the reality that it isn't me failing as a mother, afterall. It is, in fact, something else. Something I could not do on my own. I was hoping I needed to change. Because no matter what I needed to do, I would do it and it would all be fine. And it is fine, all is well. It's just 5253 more steps and people getting there.

And that realization has come with a bucket of emotions that are hard to sort through. I hate that he doesn't get the typical package of life plan. And while that could change for anyone at any time in their life a million ways (we are all temporarily able-bodied, afterall), I hate that right now he doesn't get to easily blend into typical kindergarten life. I hate that he has a short bus picking him up. That he isn't able at this time to jam into a regular bus full of kids that spans the length of the street. I hate that he almost never waves to me from the window. That I never hear how the day went no matter how many clever ways I try to ask. I hate that I never know how he is going to react and what is causing it. I hate that there is a wall of understanding in between us I have to wait to figure out. On waiting lists for specialized people to help us work through it. I hate that I didn't go to school to be a psychologist like I initially wanted to. I hate that I didn't know typical so I allowed myself to be talked out of this diagnosis on two seperate occasions. I hate that I didn't ask the right questions. I hate that if I had followed my gut he would have had much therapy by now and perhaps his introduction into elementary school would be different. I hate that this exists. I hate that I feel this way.

But it's fine. It's a process of understanding it all and him and I just feel like we are sitting in this dumb canoe in the middle of a lake and it's spinning in circles. And we're not laughing, it's not funny or fun. It's making me sick, actually. I want my paddles and I want to know where to dock it so I can get my son off of this canoe and go exploring life together the way he needs me to. I hate that I constantly question every single way I work/ interact/ apply consequences with him now because of what I sort of know and what I don't yet know. I hate that he is regressing all over the place. I hate that I don't fully understand why or know how to stop it! I hate the horror stories I hear about uncooperative schools or teachers, confusing IEP language, and parents that don't know how to fight. And I hate that there are loads of kids that get lost in the system without a proper advocate.

***

But I love my guts. I love that I kept pushing, kept trying, kept at it. I love my son. His teacher. His father. His brother and sister. I love the humanity I have seen unfold before my eyes in the past few weeks of other mothers reaching out and offering me all their stories and comfort and understanding as I figure this out. Mothers whom have been involved in this world and desire to save me from the mistakes they learned and hoops they have already jumped. I love their battle wounds they are showing me and success stories. I love their desire to join hands with a total stranger for the sake of a child they may never even meet! I love the available resources on-line to help me fill in the gaps. That I know each of our family members either think of us, help us, pray for us, or even just smile and love my kids. I love the hairdresser that went above and beyond to help comfort him during his haircut. I love Sister T. who willingly accepted a calling to help him each Sunday during Primary. I love our neightbors that know him and develop relationships with him even if it takes a long time and much effort. I love how much Cache adores Zane. I love every single friend he has because they are helping him feel loved and centered and they each mean the world to him. I love the special friendship his cousin Cannon has developed with him. I love every person in his path that takes the time to provide extra patience and not judgement. This past month each of these people have made me feel so supported and happy and they don't even know it. They are helping me build a community of love around Zane that will help him naturally strengthen his social and behavioral delays in addition to his self esteem. I love the people that I don't have to explain things to.

You know, you have a baby and imagine this life of expectations and experiences pulled together like a braided rope. When you learn your son is Autistic, you take the knot out of the bottom of that braid and you have to wait and see. What kind of braid will it be, what are the new adjusted (if necessary) kinds of knots we tie in- the capabilities and kinds of potential our child with Autism is capable of. So you can know the proper amount of expectation to help them strive for and adjusted goals each step of the way in their life. Our job as his parents is to help him reach his potential, which is no different in purpose than before a diagnosis. It just might take different paths and tools to help him get there and perhaps a different kind of series of twists than we thought.

It's kind of like seeing a location you want to get to, but learning your route to get there isn't just following street signs. The journey involves more details and steps and people along the way. And you wish for the sake of the child it didn't need to, but it does and so you do it. And I know it will come with all the cheerful blah blah blahs of the glass half full stuffs, but I also know my child is going to stop and see along the way on his own at some point that he just wants to take the same path he sees everyone else taking. He just wants to do the same things without all the steps. And he is going to have his own feelings about it and it's going to hurt. And we will rally behind him as he navigates through his steps and journey. And I'll hold is hand if he needs to cry about it. And I'll hand him a pillow is he wants to throw punches about it. And in the mean time I will keep my nose in the books and my ear on the phone and my head in the conferences to gather all I can and mix the cement for those steps in his life we need to help him place between point a and b.
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