Wishing for something….

This weekend I had to call my mom. To risk sounding like a spoiled brat, its not that I didn’t want to, its just that it seems more like a duty, or a chore rahter than something I actually look forward to. But Ive learned the hard way that if I don’t call her once a week, she shows up on the door step wondering whats up. Its easier to place the call, and get it over with, so this weekend, I bit the bullet, and called. While the kids sat a few feet away eating lunch I filled her in on the past week of life, what the kids were up to and tried to steer away from subjects I didn’t want to discuss with her. Like Josh, and his “Diagnosis” and all that fun stuff. Infact, I pretty much tried to keep Josh out of the conversation.

It wasn’t until I was about ready to go did she ask “What ever happened with Josh?” as if I had just dumped him off somewhere and forgot about him. I assured her he was fine, and watched as he threw most of his lunch at birds, people and passing cars…screaming every once and a while. I didn’t want to go into details with her, because honestly, I just didn’t want to talk with her, about that, right then. But she was going there, and before I had time to tell her I really needed to go, she was already diving head first into what was soon, another one way conversation.

She gave me her thoughts, opinions, advice, and so forth on “Difficult children” such as Josh, telling me that she knew all about difficult kids. After all, she did walk out when her kids were young, she SHOULD know. Not her words, exactly. But still. She went off on her rant about doctors, making money, and the traps that they lay for people with young kids, hooking them and bringing them in with their childs life on the line. I listened, and waited, knowing what was coming…and then she asked. “Did you ever get the results of his test back?” as if I had taken him in for a series of medical test…if only…IF ONLY it were that simple.

I waited a few seconds not sure how to respond, and then told her about the appointment. The doctors…and eventually, the final “Diagnosis”. She was mostly quiet, and listened for majority of the time, until I left a gap, and she filled it “Well, you don’t actually believe that, now do you?”. Throwing any chances of actually wanting to believe myself on this one, out the window quickly replacing it with doubt, and second guessing, wonder and guilt.

She spent the next 20 minutes giving me a debriefing on autism…telling me about the “Scam” and “Money making” scheme that doctors have come up with to prey on “Difficult Children” by placing an “Official label” on them, to give the parents – who are more than willing to do anything – some way to spend more money and feel good about it. When I didn’t say anything, she took my silence as agreement, and began giving me a speech to tell the doctors next time I met with them.  It was about that time the spit started to fly and she really worked herself up.  I told her I had to go, hung up and stood there a few minutes while my head spun so fast I couldn’t even think or see straight.

Its not that I really expected her to be supportive, its not that I was even looking for “Support”. I could really, care less if she thinks that autism is a scam, or hoax. I don’t care if she has opinions, or ideas, or any of that…infact, Im all for it. But what I didn’t expect is for her to take off on a rant, and leave me completely defeated. As if somehow I had made the choice myself to introduce autism to Josh…and Josh to autism.  Maybe I had fallen into a trap, or something, and maybe I was giving Josh over to the doctors to “Crucify”. Maybe…

I don’t know.

I wont say I have completely given up, because I always tell the kids not to give up and I don’t want them to think that when things get hard, you can just…give up. But I will say a part of me gave up this weekend. I piled all the books and papers and research and confusing words I had tried to understand, into in a box and shoved it in the corner. I intended to talk to Joshs therapist this afternoon about getting him into some different therapy, and canceling some of his other “Unneeded” appointments. I had intended on setting up a time to talk with someone about where to go from here and getting some help to sort through things because I really don’t understand any of it…

But I didn’t.

Because I just don’t know now.

Im back to square one. Back to second guessing, wondering, and left answerless. Only this time, Im not exactly…looking for answers.

Ive given up dreams before.  Ive given up the idea of ever living a day that wouldn’t be filled with state workers, and surprise visitors. Ive given up ever trying to turn this page and start a new chapter…so why cant I get over this?  Why cant I just accept the fact that this is how it is, and no amount of trying to change things is never going to amount to anything.  Why cant I just learn that this is how Josh is, and no amount of therapist, or doctors, or money, or…whatever, will ever change it.

 Is it really just me who can accept this? Is it really just me that thinks there MIGHT BE HOPE out there? Is it really just me who is playing into this “Sick game”?

Its like Im wishing for something…something that just isnt there.

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3 comments

  1. Ahhhh so much I want to say here. I haven’t read a lot of your blog but I have read a “chunk” here and there so I don’t know your whole situation but holy cow have you had some huge mountains in your way my friend. Autism is SO not made up, we can look at our children and see that. People are going to get more and more brainwashed by douche bags like Dennis Leary and other stupid celebrities that don’t know autism from asthma. You are a saint…seriously…for taking the high road and just telling her you had to go. I don’t think I could have been so graceful in my response. Adrian was diagnosed in ’06 and there isn’t a day that goes by that I think “am I doing enough?” & an occasional “man this really sucks, he’s not making progress” and on and on. You are not alone. Keep hoping, keep wishing…it will help drive you forward. Keep intervening. Don’t let people tell you it’s fake or he’ll grow out of it. You are doing what you need to do and to me it seems you are doing a good job of it, keep going! I think there is a point in which, yes we accept who they are and love them anyway. But for me personally…we should always push them to try harder and do better. I have found picking tiny goals for Adrian really helped me to see his progress. I’m rambling on but I really enjoy your blog, you’re a great writer and I am going to keep reading so I can get the “full story” so to speak. I don’t want to seem preachy but it just seems like you’re going through so much right now and I’m trying to be encouraging so I hope it doesn’t sound too preachy. Ok…that’s enough typing for me for real now LOL

  2. We adopted three boys with various forms of autism and appreciate those who would blog on such an important subject. People more than ever need to be informed about autism and what life is like for those so affected since this debilitating condition seems to be on the rise.

  3. Autism is definitely for real.

    KJ: Autism doesn’t have to be debilitating at all. I’m autistic, and while I might get very frustrated with low stamina sometimes, I most certainly do not feel “debilitated.”

    Mr. Dave……

    I’ve read more of your blog since I posted the first comment on your entry for today……..give yourself a break, man……..seriously. You’ve dealt with alot of heartache in the past few years…..believe in yourself that you’ll do right by your autistic son and your other kids too.

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