Just a day

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.

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Categories: LDS Mom of Autism | 2 Comments

Dragging Angels thru the Mud…Watching for Tender Mercies

Just an ordinary Thursday.  But it’s not really.
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Today is a milestone amid the mundane.
For the mundane, it’s a homework day; and I am sitting here watching my hero-warrior daughter fight to keep doing her homework even though the effort of staying focused after a full day of battling sensory struggles and sorting thru social thinking, always brings her to tears and makes her heart hurt.
For the Milestone; today marks one more month left before the end of the last semester of her senior year.
But not graduation.
It’s been a hard couple of years, as the pace of 11th grade was never really recovered from before full fusion back surgery for scoliosis.  So in order to keep her functioning and moving forward, I have had to insist that she can’t do double-time pace that the school district wants to force upon our kids.  I have even had the councilors say that lots of kids are having emotional anxiety this year, and they say it with puzzlement. It’s a duh moment… but for my sweet Angel, it’s like a jaunt thru Hades.  So she has a few online classes left.  Or not.  The public school won’t talk about GED options, it’s not in their best interest financially.  But I already have been that way for my older boys- the pain of High School was more than they were able to bear.  So yes, I know that road.
“What about accommodations?” you ask… Well,  my journal friend, IEP helps are only given for those who cannot keep their grades up without it.  She has a few 504 helps, but that’s all the help we have ever been able to get the red tape to do. That nasty catch 22 of twice gifted.  It’s tripping us up as she is no longer coping well, and it’s even getting to her health.  But my sweet T has a lot of friends. It’s a great group of angels that were drawn to each other in early Junior high.  And she really wanted to walk across stage at graduation with them.  It’s the only reason I have been helping her fight to keep the pace.  She tells me I am the character “Joy” and she is “Sadness” being dragged thru school by the foot.  I’m not sure that makes me feel any better.
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I used to manage to stay afloat fairly well, bouncing back from moments of drowning, with the help of Heaven and Family and faith, tho the House chores suffer.  But as the years roll on, my health has grown more untrustworthy, in large part from the decades of sleep deprivation; and I suppose I empathize too much with my older kids as they move thru all this.  It gets harder and harder for them, and for me.
So today, on the tail end of the latest unsuccessful red-tape moment, I tried finding some comfort at Deseret Bookstore.  But I couldn’t find anything to fill my need.  So I turned to fb friends for comments on “How to hang on to joy thru our special griefs”.   Most of the comments managed to remind me of things I already knew, but couldn’t bring my tired head to remember.  For that I am so very grateful.
Perhaps you would like to see a bit of the list. (In no particular order)I didn’t list ask for help- because I think this list is for those times that come after that.
-Thinking outside the box
-Gratitude / focusing on the positives
-Stay in the moment
-Laugh
-Favorite Scriptures / first aid scriptures
-Praying for peace / Pray a lot
-Be gentle with Yourself
-Watching for Tender Mercies
-Recognizing the blessings that come BECAUSE of the griefs
and don’t forget
-chocolate and Hiding in the bathroom
:)
Not bad- I can remember moments when I have used all the above.  I also have used
-naps
-service (to others outside my family, usually in secret)
-indexing (and temple work)
sometimes there is no time/ energy for more than a shower, but I always know that I can ask for the blessings of the priesthood to help.
Well, working thru all this was so good for me.  Especially the reminder to watch for the Tender Mercies.    One tender mercy already tonight, is that I somehow had the courage to tell my sweet daughter about the school’s position of the day- and she was carried by all the prayers from family and friends, to stay ok (not happy, but still able to think and keep moving forward) Very big moment of gratitude here.
So, time to get back on track with my good moments journal…Thanks to everyone who pulls together to help us out in our struggles.  I’ll end with a  courage quote that popped up in my memories feed on fb today.
“The struggle of life is one of our greatest blessings. It makes us patient, sensitive, and Godlike. It teaches us that although the world is full of suffering, it is also full of the overcoming of it.”
― Helen Keller

(Jerimiah 1:19   And they shall fight against thee; but they shall not prevail against thee; for I am with thee, saith the Lord, to deliver thee.)

Categories: LDS Mom of Autism, Midnight musings | 2 Comments

The Gift of a Friend

Friends--4d0f7c9fb48a2

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.

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Categories: LDS Mom of Autism, Midnight musings | Leave a comment

Running on a knife edge

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.

They’re “Aware”

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

disappear

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.

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Categories: LDS Mom of Autism, Midnight musings, Poetry | 1 Comment

Saturday Morning Courage Quotes

I am amazed that I have a tiny space of uP1010315tter quiet this morning.  So I wandered thru some courage quotes, to keep me going today.
Thought I would share. :)
“The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse.” -Helen Keller

“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.P1010332 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.   Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter,P1010290 and the glory which shall follow after much tribulation.

Categories: Uncategorized | Leave a comment

Guest Post- Blue

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.

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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,T- fun- Jan 2016
Blue’s the tears of joy in Grandma’s eyes.

Categories: Guest Posts (seeing the Autistic perspective), Poetry | 2 Comments

A Moment of Hope

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.

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Categories: Midnight musings | 3 Comments

“Fear Not”

Just needed to hunt down my list of first aid scriptures today.  Here is today’s selection.

Isaiah 43:1-2
1 “O Israel, Fear not: for I have redeemed thee, I have called thee by thy name; thou art mine.

2 When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.”

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Fall break- 2015

Categories: Courage quotes, Uncategorized | Leave a comment

Like Me?

My sweet TeaRose has had a cold this week, T- Jan 2016on top of everything.  Finally on Thursday, I let her stay home from school.  During one of our cuddles to get past a meltdown moment, she turned to me and asked,

“Did Jesus have Scoliosis like me?”

What? (think fast, think fast)- “Um- why?   Have you been talking about Christ in Seminary?”

“Yeah”- and she went on to say they had been talking about where it says He takes all our infirmities upon himself.

Ahh–  So we talked a bit about how it would take a thousand lifetimes to live out all the worlds different weaknesses and pains and illnesses, not even counting the mistakes– if he had to take them in real-time… he couldn’t do that- so in the Garden, it was poured out and sped up fast-forward, which I think is immensely harder to bear, but necessary to get it all in.  So I told her, No- even tho he did have normal stuff growing up, he did not have everything, and scoliosis was likely one of the things he experienced in super-speed at the end; but he did feel it all- he knows how she feels.

It was a good and comforting conversation.  These kids of mine think deeply often enough that it doesn’t really surprise me anymore.  Then she was back to her regular wear (so to speak) little girl self.

T- fun- Jan 2016

Amazingly enough, tho’ not really;  the very next day this lovely talk by Elder Holland came up in my facebook feed.  It fits so perfectly, that I need to end here with the link to it– enjoy- I hope it lifts your spirits like it did mine.

https://www.youtube.com/watch?v=UGvAQQ8wLNE

Categories: Courage quotes, LDS Mom of Autism, Midnight musings | Leave a comment

Snapshots from a very very long 4 weeks.

Well, Dear Friends in Blogland,

This has been a mondo last few days.  Actually, to be fair- it has been a humungous ginormous last four weeks, but I’m kinda hoping this weekend was a climax of sorts, so we can slow things down a bit.  Because I seriously want to highlight some of the highs and lows of late, but I am having a hard time finding enough calm-quiet-alone time to do any writing.  I have one of those rare half-hours, so lets see how I do.  Here we go.

Well, let’s see…..

Getting thru to the end of the school semester took almost all I had to give.   And a lot of support from Heaven.   On the good side, I (barely) remembered in time to get myself online and order gifts for “Santa”.  ( I LOVE online shopping, especially when I am so tired.)  Kydee is absolutely having the time of her life being in High School.  Going to her orchestra concerts has turned into a mom and youngest kind of thing, tho’, we leave everyone else home.

Last concert of the semester

Last concert of the semester for Kydee.  Awesome!

Dad helping get thru a photography assignment

Dad helping get thru a photography class assignment.

 

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Not many traditions have survived the stress, but we managed to keep the Day after Thanksgiving gingerbread decorating.

DK had a bittersweet semester.  He is doing really well in keeping up in his classes except his favorite one-Mainstream Drama.  Unknown to us, he had been carefully and quietly not telling anyone that he had writing homework in that class, and it was not until the teacher reached out to his spec-ed teacher that we found out how close to failing he was.  So with a lot of help from both teachers, they pulled him thru; but with a lot of emails between me and the counselors, we decided that that maistream class just wasn’t equipped to provide the help DK needs.  Oh were we sad that week– I still agree with the school on this, and we replaced it with PE which he is enjoying. But I would still recommend Drama class at some point for any kids list of helps needed- it has helped sooooo much in DK’s maturity and ability to read facial and body language.  Oh, and if you ever get a teacher willing to bend over backwards and go the extra mile to help pull your kids thru a hard time, make SURE you tell them how much they are appreciated!!!

But the end of the semester came, and we all breathed sighs of relief to see passing grades for everyone YAY!!!!!!! Then I had just 3 days to try to clean my house for the holiday and visit from Grandma and Grandpa.   I didn’t make it, but close enough.

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Letting the kids do the decorating leads to some fun finds… looking around the tree I started finding little story vignettes, like this elf riding the reindeer.

...and the sister fairies holding hands :)

…and the sister fairies holding hands:)

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Huge Hugs always make everything better!

I can’t tell you how much it means to me to have loved ones so willing to be un-judgemental and just uplifting.  (Santa scored awesome, by the way- not many gifts this year, I was too tired, and so was the wallet after such a huge surgery– but careful thinking paid off)

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sheetrock

3 more days for Grandpa to try to help with the boys room remodels (yup- still working at it, we are so slow when mom doesn’t feel well and Dad’s job is in overdrive deadline mode).  I also was packing at a whirlwind pace and stocking the pantry and fridge, in and around kids’ migraine needs and rather constantly climbing stress.

Then almost instantly, it was the day before New Year’s Eve–P1020577 and time to hop a plane- for a trip up to the cold Utah weather for a family Wedding.  Now flying is great fun, but not fun enough for oldest to want to overcome claustrophobia and migraines and other travel stressors. We had already planned for that, and Hubby stayed home with him, and I had the other kids with me… oh, and part of

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kids loved hearing about ancestor part in building doors, etc.

December’s budget had gone to revamping our cold weather gear, seems everyone grew at least 3 sizes since the last time we went up for snow. :)

But it was good- and all my kids can now say that they know how to dress for 0 degree temps. :)

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At the Salt Lake Temple grounds- it was a “warm” 13 degrees that day.

I was also happy to find that my ability to drive in the snow was still in good working order.  My kids thought it was fun to know that mom can drive a truck, tho’ they are all glad that we don’t have to borrow Grandpa’s king cab pickup all the time- a pile of 6 foot tall kids are  just too big for it.

 

Then without pause to breathe- we flew home on Sunday after New Year’s, and school started on Monday.  I think this was just toooooo much of a whirlwind push for my sweeties.  Even tho it was fun, and family; and even tho’ I made sure to rent a hotel so that I could get all my kids out of the happy chaos in time to keep their sleep schedule on track, by Sunday– I had to almost carry some very wiped out asd teens thru the airport.  I am kind blessed that they trust me enough that most of the meltdowns were kept to just tears and hands in tight fists, but I could see the toll it was taking.  Even in health- the seasonal common cold bug that the kids brought home at the end of last semester was just not letting up for TeaRose, her immune system had just had too much to do this year.  But I told them that the first day of the semester was too important to miss, and then I let her stay home sick then next day.  But still, the collateral damage of long-term trauma is hard to miss- I had to buy a hair catcher for the shower to handle all the silent strands of witnesses.

Well- somehow we got up to speed, mostly, and  get to last weekend–it’s the end of the 3rd week of the semester, and it has been rocky.  But you know, these are the times that warriors are made.  We’re still happy- The Lord is good.

Categories: "only with Autism" Adventures, LDS Mom of Autism | Leave a comment

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