It sure has been a long space of time since I last sat down with total peace and quiet around me. On the other hand, I think it’s actually a good thing that I waited to write about the end of this school year- It has given me the chance to breathe after the amazingly high-stress black-hole of this year. Time to refresh my perspectives. (LONG POST ALERT)
First, the not-so-good, ok- really bad, so that the good can be truly appreciated…..
Bluntly put- 12th grade for a kid who is quite autistic, but smart enough that she can’t get an IEP (cause her grades are above the “failing” requirement) is hard to describe any other way than harsh. The nasty catch 22 of what some people call “Twice Exceptional” (learning issues/asd/etc. plus smart) has no foot-hold in the school systems, every inch must be carved out by hand. This is not the first time I have had to walk the path of end of high school with my kids, but every kid is different- and so never can I walk a path that I have already done. It’s new every time.
I am blessed, that even with 5 peeps on the Autism spectrum in my family, I don’t have to deal with major years for all of them at the same time very often. (phew) This year has bean close, but was mostly my TeaRose’s turn. With the lovely (not) addition of starting the year off with a full major back fusion surgery to treat her serious scoliosis– much of the time, neither of us thought we would get out of this year alive. We were lucky to have good teachers, and also a couple really good friends; but I think that I will actually, gratefully, leave most of the details of the red-tape “fun” in my journal. Suffice it to say that the curling up in a ball in mommy’s lap shaking with anxiety attacks, had degenerated into a more than once a day thing, and functioning skills were actually going backwards. There are still a few loose ends that we have to tidy up this summer – BUT WE MADE IT! BREATHING, AND SANITY INTACT!
At this point- I want to totally put a plug in for my personal anchors in the storm–And I would be very ungrateful if I didn’t mention some of the Good moments.
1- Kydee was super excited to be on the Principal’s Golden Scholar list for straight A’s. She has really enjoyed the 9th grade, and is a true friend and source of fun for all her siblings. She handles it all with a grace that she is not even aware of.
2- Friends. TeaRose has had the amazing blessing of being pulled into a great group of kids that hung together all the way thru jr High and High school. They probably don’t know how instrumental they were in keeping T successful on a day to day basis, but they were- and I send a prayer of thanks for them. Some of them even invited T to the Comicon at the end of May. I went the first day, and took Kydee. She and I geeked out on science, while T went off with her friends. In fact I sent T on her own with her friends the next day. It is a huge blessing to know I can trust those who she is with enough to be totally relaxed.
3-My Father in Heaven, and the Priesthood. I don’t know how many days I would have stopped breathing if I couldn’t have had access to the love of Him who asked me to take on this mortal assignment.
4- I read an article once that talked about a spiritual 72 hour kit; or in other words, writing down good moment and spiritual feelings during good days, to be able to go back and read on bad days when your too tired or overloaded to get past the blackness. That is also what has been one of my major survival tools. This blog and my journal are my well of faith, to draw up buckets of “I remember that” when my day is too heavy to think at the time. I go back and re-read other years where I have pulled thru and gained the tiny victories of the day. It helps. A lot.
5- Service. This year has been hard to keep this up, as the daily grind has drained away my health and emotional reserves– but it is a life-vest that I fight to keep hold of. The act of thinking about someone else’s needs instead of your own for a moment in time is amazingly good for the soul- it elevates and gives perspective, not even counting the blessings down the road. And I did find a few things to do. This spring, I spent a week doing a huge painting. I also started working on a book… I’ll tell you about it sometime. Then after school got out, I had the privilege of hauling my family cross-country with me to install the huge mural that I painted, to brighten the wall of a friend’s young son. That little boy is also a special needs warrior, and the day was a HUGE win for me and my family.
6- Family. I am so grateful for my those treasured great souls who rally around me when I am in need. And that brings me to the rest of our first week of Summer. As we drove down the California coast to meet my sister’s family at SanDiego. Something good about spending time with people who have a true interest in your life and how you’re doing.
Then off we went for the real Highlight event. It really hurt Me and my sweet TeaRose that the school wouldn’t let her walk the stage with her friends at graduation (she still has an online class to finish to get the “required credits” done- did I mention the catch 22 red-tape). So my own personal make-a-wish foundation (ie- my family) all got together to really help TeaRose feel like she had accomplished a major thing in getting thru 12th grade with such a mountain to climb. And we took her and her cousin the same age, and gave them a swim with the Dolphins. 🙂 They both deserved it so much!
It was good, even tho we had one with a migraine, and one with a massive sunburn. We even had the blessing of an awesome extra stop at the “Medieval Inn” with our huge extended family. But you know, there is only so much fun that a family full of Autism spectrum peeps can have in a short amount of time; and we all piled into the van just in time, as I could see the meltdowns beginning to build. (Everyone needed to recover for a week.) But I am very grateful. Grateful for my folks who care so much. Grateful for my Hubby who put all his own asd stresses aside to be my wonderful knight in shiny armor. Grateful to my kids who still let me drag them around on my adventures; and who try really hard to make me happy in return.
So now, even tho the load is still there and not finished, and even tho we are now back into the 115 degree summer weather, I am also very grateful that the good parts are bigger than the struggle. Gonna keep watching for those good moments for my journal. Hope you do too.