“In spite of discouragement and adversity, those who are happiest seem to have a way of learning from difficult times, becoming stronger, wiser and happier as a result.” – Joseph B. Wirthlin
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.
I made the mistake once, of telling someone that I hated Mother’s Day. I was hurting, and hoping for some comfort, but instead got a lecture about how it gives families a chance to show their mother how much they are grateful to them. Well, the years roll on, and my awesome family makes the effort to tell me every. single. day. how much they love me and are grateful for the things I do. I’m good now, tho I still don’t expect get a traditional “normal” day, with the trappings and cards. Perhaps because of these things, it has been on my heart all week, to give a card, instead of getting one.
So I drew up this coloring page and wrote a poem for you— all my loved ones and friends; Whether we are young, old, with families or not- we care for each other, putting us all in this boat of life together. Feel free to pull off this picture and take it with you to color and get silly with, whatever you like.
I Love You.
Just a day:
Hubby had to help drive the girls to school because yesterday I had an angiogram to try to find causes for neuropathy (can’t drive for 24 hours after that kind of office visit) Then he had to help pick them up- still keeping up with job, too… One asd hubby curled into a ball on the couch for a while.
Meanwhile, both older boys had a migraine (at the same time is rare, but the dust and pollen outside is remarkably high today).
Get home and both girls are not feeling the best, but after a break they let me push them thru homework time and getting ready for church volleyball.
I used to like volleyball.
But today was super loud for my T’s sensory hearing struggles, and it was especially hard when the coach’s whistle was right near her; and the crowd was especially loud and competitive; and her coach had a very hard time letting her rotate in with normal turns… So the drive home was a very long session of finding ways to forgive those who get lost in the competition too far to think of others’ feelings.
Then, as she curled her 5’10” into a ball in my lap, she finally whispered her biggest dread of the day- she got so panicked in seminary that she couldn’t respond to the nice comments from the girls near her, and “mom- I just rocked, and rocked and couldn’t stop for a long time” -she hates doing that in front of others. (the Substitute teacher had asked her to stand up and do the devotional)
Well, they are all finally in bed and asleep, Mommy has indulged in one of the big pain pills from yesterday, and it’s finally time to look for silver linings, the moments of seeing the good.
So— Well, I am truly blessed with a hubby so devoted to me. He pushes himself beyond his pain and fears daily to fill in for my weak spots and take care of me.
— My older boys both care about me and still hug me, they are also getting downright good at staying-if not cheerful- at least in control and pleasant with sibs right thru a migraine attack.
–Not to forget my DK, he is trying hard to work on his attitude and self control when I tell him it’s time to get off the computer. It’s our goal at the moment, and he is not always successful, but I see him try, and grow, and I notice profusely when he succeeds.
—My angel girls care so much for each other, and physically hurt if they hurt the other one’s feelings. And T finally let me guide her thru looking up our favorite scripture on Fear Not (Isaiah 41:10) and print it up for tomorrow,
—And Hubby is massaging my feet- that counts for double 🙂
Not too bad, I can sleep now.
It started somewhere in the first days of Junior High. A lovely sweet girl did the tiniest act of kindness on instinct. She invited my young TeaRose to sit with her and her group of friends for lunch. She probably didn’t even think it was that big of a deal.
That one small gift built. The group of friends she had gathered around her, all had that same spark that drew them together, the spark of reaching out in kindness. They drew T in, and others along the way, becoming a tight core of friends-changing a little here and there with the changes in school lunches and other fortunes of life- but always sticking it out with each other. All the way.
Today that gift had reached all the way to the night of Senior Spring Prom- which T did not want to attend. And it turned out some of the others didn’t either. So one lovely young lady decided to throw an “un-prom” pizza party, and didn’t even think twice about inviting T, she was totally just part of the group.
OH, how much fun TeaRose had!!!!! She came home giddy with joy, telling me how wonderful her friend’s parents were and how silly her friend’s brothers were, and how much she loved her friends. Oh, and how she had never stayed up this late at a friend’s house before. 😉 So now, it’s quarter to 11:00, and she barely made it thru prayers before the sugar crash and the late bedtime tackled her hard… but I am so grateful. Life is hard. Some years are harder than others, and this year has been crushing. But for this one moment in time, my sweet warrior had the gift of just being a normal friend at a senior party. Such a beautiful gift.
I walk the knife’s edge.
As “World Autism Awareness” day approaches, I wonder if that’s all a good thing.
True, when I was growing up, I had never heard of the word.
When my kids were small, neither had most doctors.
Now most people have heard,
seen the t-shirts.
and some care.
But this week, my son spotted my bumper-sticker, “Mom! I can’t believe you have this!
“I can’t believe you would do this to anyone-You know that word is toxic!”
It’s true- In his age group- well, let’s just say if that word comes up-
All the friends he’s been trying to make
into thin air.
“It’s not pretty” he says “and it’s mostly because- of young mothers in all their campaigning.”
Ouch- my heart hurts. Like a mother bear with unfinishable battles-
I must fight still, to get the help they may need– but I must step with care
For all they crave is to be seen as just kids
No yellow star they must wear
to make people stare.
So Yesterday I put on my red shirt and red shoes, my great big folder in hand as my weapon.
Took on the red tape, and was strong in my stand–it was good.
But then I dropped it all at home in my room, notes will wait.
for Today I will hug, laugh and play without care
of the knife edge- It’s worth it
to be loved by these angel warriors
God placed in my care.
“We could never learn to be brave and patient, if there were only joy in the world.”- Helen Keller
2 Nephi 2: 11 For it must needs be, that there is an opposition in all things. If not so, my firstborn in the wilderness, righteousness could not be brought to pass, neither wickedness, neither holiness nor misery, neither good nor bad.
D&C 58:2 For verily I say unto you, blessed is he that keepeth my commandments, whether in life or in death; and he that is faithful in tribulation, the reward of the same is greater in the kingdom of heaven. 3 Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter, and the glory which shall follow after much tribulation.
Today’s Poetry is written by my sweet Tea-Rose. She said “Everyone says blue is a sad color; but it’s not.” So she set out to share some blue happiness.
Blue is the color of seas and skies,
Blue’s the shade of butterflies.
Blue is the bird that softly soars,
Blue’s the rain that gently pours.
Blue is the Shell that the Ocean brings,
Blue is the brook that sings and sings.
Blue is the glittering of Sapphires,
Blue’s the hottest of a Blacksmith’s fires.
Blue is fireworks on the Fourth of July,
Blue is Forget-Me-Nots saying not to cry.
Blue is the magical fun of dragonflies,
Blue’s the tears of joy in Grandma’s eyes.
I just now had the most amazing glimpse of a vision, and I really need to share.
You see, when you get dragged thru the depths of the cold waters of non-stop needs and trials, you tend to get so tired that it’s hard to hear the spirit so well anymore. At least for me. So I have been praying hard for the Lord to help me replenish my bucket of faith so that I can keep going. Then, prayers are answered, you know. It was probably the shortest moment of personal revelation I have ever had- but amazing none-the-less.
For tonight- after a enjoying a very uplifting tho tense movie with my kids; I was tucking the girls into bed, and a flash of a picture played across my mind’s-eye, like a Déjà vu.
I saw the counsel fields of heaven before the world was, but after the great counsel and the resulting epoch battle… there was this huge, crowded, line of beautiful women, warriors at heart, and linked arm-in-arm, and laughing and talking, full of the most incredible joy in each other and the glory of God’s plan. I was in there somewhere, tho it didn’t seem to matter where, and we had just been called to a meeting with our Heavenly Parents. Then it came to me that this group of mighty women were those who were being asked to perform the most grueling of tasks- one which we would not see the victory of until it was over. Gladly was our hearts’ response.
That was the end of the glimpse, except I know what came next- I have felt it many times…..”Thank you” said the Father. “I need such strong and humble daughters to be the mothers of my most special angels- these will be the ones who will have special needs in their small moment of mortality, usually needing constant care, often without any visible hope for what will seem long stretches of time.”
I am so grateful for this glimpse. It feels so nice to know I am not alone. I’m grateful that the Lord takes the time to mend my weaknesses when I have nothing left to give. My anchor is re-set, my heart feels ready for another long week. May He send a moment of Hope to you too, my friends.