19 May, 2010


We are dealing with some "stuff" with Jake right now. It is overwhelming my life emotionally and stealing all of my time and energy.

I want to talk about it here because I think it could help other families to see the struggles we are going through. Over the years when I have talked about major hurdles, like sleep deprivation or medication or lack of childcare, I have always received emails from people who felt like maybe they were going to be okay after hearing about us figuring something out, or from readers who felt less alone because they were experiencing the same type of grief, or frustration.

but I also don't want to talk, at all, about any of it, because I have such great shame.

When you have a special needs kid you begin the race of parenting with one hand tied behind your back, no map of the course, and a delayed start. There are no books which have been able to help me parent my particular child. They have all been too cheesy, or too sad, or too assuming, except perhaps My Baby Rides the Short Bus.

And our families sure didn't have any training on how to "deal with this kid who is quirky and walks funny". The struggles my parents faced with me were more like, "How do we tame that sass mouth?" and "When is she leaving for college?". And Descartes, it appears, was perfect growing up, never causing trouble or making messes that weren't precious, and he certainly didn't sneak out of the house on his 16th birthday and take his new car out for a spin. So as supportive as our family is, they don't really know what to do either.

Which means we basically make it up, or look ahead on the trail for other families who have done some of this before. We know though, really, that parenting our kids is our job, with the support of school and community, but really this stuff is under our purview.  And while Descartes is a lovely, involved Daddy, I am mostly the at-home person who is front line, so I feel pretty responsible for the health, welfare and development of both of my kids, and I feel horrible when I can't get it right, and right now I can't get it right. I am not even close.

I was raised with three main precepts:

  1. We will always love you; although we may not always like what you've done, we will always love you.

  2. Jennyalice, you have been taught right from wrong, now judge yourself accordingly.

  3. Well, Jennyalice, as long as you did your best, whatever the outcome is fine. You did your absolute best, didn't you?

And that last one is what gets me every time because I can always, always try harder, do better. ALWAYS. There has not been a moment in my life when I could not have done something better. I could have planned it better. I could have executed better, or faster, or more precisely. I could have been calmer, or more emphatic. I could have been more eloquent, taken on a little bit more, recycled, bought the less expensive one, ridden my bike, called ahead, mapped it out, ironed it, sewed it in a straighter line with stronger thread. I could have cleaned it up right then, or never let it get that way in the first place. I could have thanked someone at the time. I could have apologized, or even better, not antagonized someone into an argument. I could have been patient... I should have been patient, or closed my mouth or thought for just a moment before I ever uttered a word. I should have proofread it all one more time before I turned it in.

I cannot think of anything that I have done that was my absolute best. And most of the time I just live with that gnawing feeling that I am not quite living up to my potential, and I am fine, but when it comes to raising Jake, it is like the wind gets knocked out of me because I know I have not tried hard enough. I know. I know. I know. 

and I know because I can name things I haven't tried. I have boxes and books and files and charts and half written blog posts of things that have not been tried, or they were tried and abandoned, and this "stuff" we are going through with Jake right now, I know I could be trying harder. I know there are things I should have done already.  I haven't read any of the books I bought on the subject, or taken much of the good advice offered by very close friends.

I am just so ashamed that I let it all get this far, and sad and I feel like I have failed my son, and you know what else? I'm tired.

And while I know that we will get through this seemingly increasingly-steep part of the course, I am just so frayed and ragged dealing with the mess, that I'm not sure when I am supposed to get it together to plan out the solution, and even if I do, will I be able to put it all into action, and convince everyone else?
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