Pickled, but still damn good.

I have a meeting in a few hours. We’re supposed to be discussing “future planning”. It’s exciting to discuss my son’s future and all at the same time its filling me with anxiety. High school graduation is a mere few months away and after that … the world.

Considering that no one ever thought he could graduate high school, Im elated. He DID IT! He beat the dealer with the cards stacked against him. I can not even find the words to convey how proud I am. Also, I get the added knowledge of having proven someone wrong. So, HA! On the other hand, the hand I keep closed to the world, Im freaking the fuck out. The real world awaits and I have no idea how to properly advocate and navigate for him in it.

I always thought that the hard part raising a child with special needs would be childhood. I dont know why I thought crossing the magical adulthood threshold of eighteen would mean anything more than that. As it turns out, my job in raising is not nearly over. The reality is this: you are never done raising a child, any child. Your job as a parent continues until the day you die and even then your lessons may not fully reach their ultimate teaching value until post mortem.  When you have a special needs child the role is just more hands on and nose in their business.

Because my Pickle has made so mnay strides since making the hard decision to place him in a group home setting with other adolescent males with developmental disabilities, I think our treatment team may have gotten a little ahead of themselves. In early December we were on a graduation, independent living track with parental and county board check and balances in place. Now, I’m finding out that his dream of attending college to pursue an occupation in computer repair could be a reality. HIs extended home visit over the holidays also revealed some major concerns that could never have been caught in the group home setting. With staff scheduled around the clock in a group home setting, there is always someone to close doors when coming and going, make sure foods are properly used and stored, medications are dispensed as prescribed, that money is handled accordingly. Obviously, all these things are available to him here at home as well, but I put more of the responsibility on him, whereas, staff are being paid to do these things as their own responsibilities.

The reality of all this hitting over the holidays while my husband and I were desperately trying not to drown our marriage in bitter waters was a bit much. In the thick of it I didn’t realize that was what was going on, but standing outside of it all now, its plain to see. It hit hard that many of things we’re dealing with now are things we will be dealing with for the rest of our lives. Its overwhelming.

What Im most thankful for is that I wasnt overcome with resentment while having this revelation. I finally feel past the part where I think that this isn’t fair and how nice it must be for my Ex and his ex to be living their lives without worrying about who will look in on their grown child should I land myself in the hospital…again. It just is what it is. I know, everybody knows, no matter what has been said, that Ive stepped in to fill shoes someone carelessly tossed aside and even though, I make mistakes I at least had the kohanas to step up to the plate and take a swing at it.

We may not hit a homerun at every at bat, but we’re doing pretty damn good.

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2 thoughts on “Pickled, but still damn good.

  1. re: “I finally feel past the part where I think that this isn’t fair and how nice it must be for my Ex and his ex to be living their lives without worrying about …(x,y, or z) ” – yeah it took me a long time to get past that and sometimes that ugly burning in my throat comes back up. How come they get choices and I don’t? But – Ultimately we DO have a choice, the same choice they made is one of our choices, really – but we won’t choose that.
    So ultimately what you have to do is set up your own plan B,C, and D … independent of counting on people you know can’t be counted on.

    Congratulations on his graduation and I hope his future is so bright he’s gotta wear shades! Meanwhile it is good to have a place where you can vent and figure things out.

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