A Lifetime of Birthdays: November 27, 2016

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images-7Sunday. Funday. Although I wasn’t filled with much fun. I think everyone was a bit “touched out” and cranky on Sunday, although I did my best to be celebratory and grateful. There were moments when #LifewithAutism pushed me over the edge and I lost my joy and thankfulness.

Hubby (No. 1) and I  fasted in the morning to make up for all the extra calories and sugary items we’d enjoyed over Thursday and Saturday. #gettingoldaintforsissies and if you want to play you have to pay. I cleaned house, he went to the storage unit and got Yule items so we could at least set up our tree, which we did. The house (N0. 15) is beginning to look a lot like Christmas. Then we grabbed a quick bite to eat of leftovers. Then we set things up for the arrival of my father-in-law for our weekly Seahawks game with him (No. 4).

I wasn’t much into the game and started pintrest-posting our menu for Yule Eve/Yule Day. Youngest son was a total grump, and MWB was pestering for cash to go BMX’ing. I headed into the bedroom and read (No. 7). When I came to the end of the book, I went back into the living room and began putting the decorations on, as hubby had set the tree up and put the lights and topper on. We have a new topper this year, a Yule Stag, and I just love it. It was a birthday gift from my husband. By the time we finished decorating, the game was over — an absolute terrible outing for our ‘hawks, as there were too many injuries. FIL headed out, having spent many days here already over the course of the week, and I think he was ready to be by himself.

Hubby and I did a meditation (No. 8) because we both were feeling out of sorts. Then it was time to have a real meal again. He heated up leftovers, while I searched online for a new Yule Tree Skirt. Since ours has long been worn out. We ate leftover salmon and crab cakes and butternut squash pasta (No. 10), then we listened to jazz (No. 9) and hung out in the kitchen prepping for more Yule festivities. Hubby was reading the newest Motorcycle Consumer News (No. 19) and sharing information on it with me.  We dreamed about motorcycling again and what it would take and we’re kind of at a cross roads with it. Again, lots of what we have to do in life (Namely No. 2, Kids) interferes with our ability to have extra time to ride again. But, it’s not discounted yet. Then we retired to the bedroom to cuddle up and watch some of our programs. Not exactly Couch Time, but we needed the sanctuary.15195940_10211370102190602_6127113200768413290_o

In between we took breaks to stoke the fire and cleaned the kitchen and talked. Mostly we talked about strategy to help our middle son. We’re struggling with #LifewithAutism right now. We cope for a time and then it just crushes us down. We finally have an attorney that called us back, so we’ve got some hope on the horizon. I’m trying hard to not be a downer and think that there will be no help with getting an attorney and trying to get my son housing, services, and sheltered employment. On Jan. 9, he’ll be 21 years old. He has no high school diploma, the school having given up and saying they “couldn’t get him to progress,” which is their legal term to allow him to fall by the wayside. He has no job skills. He seems only interested in playing World of Warcraft competitively, and doing BMX competitively. Both of these things are foreign to us and require hand-holding we don’t have the resources to do. Also, every time we get a new person involved in this fight with us — doctor, counselor, social worker, whatever — I have to tell the whole tale all over again and again and again. It’s painful and I hate it. Think about the worst thing you have to deal with in your life — a problem that has never gone away, will never go away, but you have to face it every day and then you have to talk to people constantly all day long about it. You begin to loathe it so much and just want the problem to go away. Alas, there is no cure for Autism. So we just try to do small things like cuddle and support one another and do the best we can with and for our child. This child who looks like a man, but has a psycho-social age of about 12 years old right now.

Then I got to read (No. 7) before lights out.  I finished one book earlier in the day and am well on my way to finishing another. Given the stack of books I physically have in my “to-read” pile, this is good. 10c1jz

I’m feeling rather my 50 years as I bid adieu to Sunday, and a bit in a funk for the problems that my next personal new year will have me wrestle, which many I’ve already been wrestling for years. At 50 I have even fewer answers that I had at 49, or 39, or ever. There are days like today where I’m dissatisfied with the solutions, and other days where I realize this is as good as it gets and I’m okay with it. Today I was very much not okay with it.

Nykki Porteous

Love the stag!!

In my last training I learned about a new classification of abuse. System Abuse. Usually it’s applied to kids who are inundated with social workers, medical professionals and the 35 too many stakeholders in each kids life…

But this definitely applies to those of us who are the voices for those children/adults. After the 30th telling of the story in a desperate plea for help – the hope starts to fade and that’s a soul suck.

But sometimes hope can come in weird packages! (Or at least a little respite?)

Fingers crossed and all the good juju I can muster is being kicked your way for the lawyer.



Thank you. Sorry for the delay in response. My website has been down for like three days due to overzealous security settings. All fixed now! I’ll need to investigate System Abuse. Never heard of it. Honestly, I’m so burned out, who knows when I might get around to it, but I seriously just put it on my “task” list.

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