Author Archives: butterflypixie

About butterflypixie

I am an artist, writer, and the mother of 5 awesome kids, 4 of them have High Functioning Autism. This is my journey to learn all I can to help them steer through the hand life has dealt us.

But, Looking Up…

Some days, as much as you want to be strong and capable, it just doesn’t work out that way. Whatever is on your plate at the moment, like chronic fatigue, or ptsd,  or whatever fiery furnace is the lot of the day–  gets to the point, for me anyway, of getting the kids to their schools and places to be, then coming back home to take a nap.  Once I cound’t even do that, and I called the kids in sick. (When mom’s sick, nothing happens.)

I need to tell you of a special moment that happened for me during one of these dark parts a while ago.  I was at a point where I was praying and pondering- calling to my Father, “… I  know all the ‘Sunday School’ answers about how to feel closer to thee– The Scriptures, Fasting, doing Service for others in the Temple, etc… but what do you do when you can’t do any of these things?  What do you do when you don’t have big enough blocks of time between all the kids needs for excursions to the Temple, and you’re so drained that your eyes don’t cooperate to read scriptures, and the computer is down so you can’t even have it talk the scriptures to you?

Well,  I felt answered.

A song came to mind that I had never really thought about– and it was the second verse of the song, no less.   It went like this, as it came to me;  ” Are you ever burdened with a load of care? Does the cross seam heavy, you are called to bear?  Count your many blessings Angels will attend, Help and comfort give you to your journey’s end.”

A sweet feeling of lightening of the weight filled my heart.  And I remembered the conference talk recently of “Look Up”.  Finally, once again I felt like my head was above water and I could breathe.  Watching for the good moments, smiles with my kids, An awesome sunrise.     Writing this has been so good for me this morning…Yesterday included one of the worst panic attacks I have ever had.  But this morning’s predawn quiet was a moment of peace I was able to share with my youngest– both of us typing on a laptop (she has been doing the NANOWRIMO  (National Novel Writing Month) thing in the mornings) so I enjoyed the quiet companionship instead of popping outside for a photo, and used one from a previous lucky moment with the camera.  So, my November Gratitudes would never be complete without a loving thankfulness to my Father In Heaven, for coming to my rescue when I need it- and for journaling and blogging- that helps me remember it when I need it again.  ❤


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

Almost Adulting – Part 2

So- when I posted yesterday (Almost Adulting) I was expressing my gratitude for the time and brain power (as in free from fibro-fog and ptsd fog for a significant amount of time) to get moving on the kids portfolio folders.  But since I have a few friends who would like to see what I put in them, I decided to put it here so I have a good way to save it.  So here we go… (warning, it’s longer)

Where it all begins.

My Big Folder isn’t really “Everything”- It’s just everything I need for a full year.  A copy of original diagnosis’ are there, but only the most recent IEPs.  All of the old stuff gets filed into their big school books with their school pictures and art and stuff. Even at that, it’s hard to keep it trimmed down enough to actually carry with me to the various meetings.  My project to split off copies for each kid had it’s seed when my older girl went thru regular mainstream 12th grade English (ahem, excuse me- language arts 🙂 ) She was my first one to manage that far, and it has been many many years since I did myself- so when they had their unit on preparing for college, I was really (REALLY!) grateful for all that info in one place and time.  But even tho I started to really want to do this project, nothing happened on it for a while,  while life smacked me in the face.  This year tho, I suddenly realized I have absolutely NO more IEP meetings to go to until/unless college happens.  (wow! super weird!)  The interesting thing is,

index page for my NT high-schooler

just because they hit the edge of “high school washes their hands of you”, doesn’t stop them from needing help, nor the resources available to move forward.  They will totally need all this info and need to know how to find it.  (They also need other helps, but that is another post altogether).  So- for all you friends out there in my boat- here is what I have put into this folder….

  • – I made these info pages a long time ago to fit into my day-planner.  Theyhave contact info on the left, and a record of doctor visits, etc. on the right, folded in half and hole-punched for me, and cut in half for theses books.
  • -I also made a spread sheet of all the contact info I was gathering for the various schools we have been comparing.
  • -I just finished catching up the first 3 kids’ resume’s. Even if there is not much info to put on it, it’s important that they feel professional and grown up. (and it will surprise you what you can add to it as time moves on- Service Missions have been amazing here.)  Also included in the original school unit was a sample cover letter to a college.  This also got copied and put in this area.
  • -The school records that they will need is different for each kid for us, as we have had needed several different paths to get thru the maze called School.  For instance– for one, it is simply his GED Diploma, Jr. College records, and Seminary Graduation Certificate.  For another it is a non-official high school grade transcript (with an official one in the original sealed envelope slipped in behind it.) Seminary completion papers by year (because she couldn’t finish the year of her surgery), certificates of completion of the computer game design course she took for fun, and a copy of her State Competency exams. It will also have her certificate of completion for her Technical college and High School diploma next year… It’s been a long haul, but the light is in the end of the tunnel.  The school assignment that started this all, reminded me to get each kid a letter of recommendation- I have that on my list of to-do’s still.
  • – Of course is medical… starting with the cover-page I already mentioned, and then I took all my personal records and made a timeline for each kid.  Something to give their selective, childhood memory a back-up in “it really happened this way”.  Also is IEP/504 docs for those who had them, and official diagnosis letters where applicable.  Also will be copies of birth certificates (I’m not yet willing to hand over the originals- don’t want them lost) Driver’s license, selective service letter, and all that legal jazz, including the power of attorney papers when we get that finished.
  • – This section is for copies of their patriarchal blessing and also copies of the annual letters I wrote for scout camps and girls camps.  You know- those bits of my heart that need to be there. I also included one or two of their own personal stuff, things that speak of their heart.
  • That original high school project also had worksheets on things such as a sample budget (which she could not do- it blew her brain circuits) I actually think this was so important that I will be working on it with all the kids in a separate “adulting” folder –not done yet, but I’ll let you know.
Categories: LDS Mom of Autism, resourses | Leave a comment

Almost Adulting

Have you heard the old saying- “It will get easier when the kids get older.”  Well, it’s only partly true.

On the one hand, mom’s taxi service is getting to be a force of nature that is not to be taken lightly.  Early morning high school (before the bus) plus jr tech daily, has been raised to a whole higher level with two Young-Church-Service missionaries.  So on a full-on day, I can easily top 6o miles by lunch.

On the other hand, I have actually had a few major, whole afternoon sized, chunks of time here and there this month – where everyone was happy and independent and no-one needed me at all- and I could start moving on projects that have been set on the shelf for way too long.

The kids call it my “Everything book”

Notably, I have been spending a lot of this time taking my “everything folder” to the copy shop, and making lots and lots of copies.  With my kids starting to leave the teen years behind, the time has come to make sure they have their own copies.

with a section for each person.

Included will be their own resume, school records, health

(Index borrowed from my daughter’s 11th grade English project. I think I got more out of that unit than the class did.)

records and legal stuff, etc. all in a personal portfolio that will be separate from their photo folder.

Five new folders nearly done… Phew!

It’s been a huge project- but so good to have it nearly finished. Talk about a blessing!

So, today’s gratitude is for the gift of both the time, and the ability to think, thru getting all these records worked on and organized.     It’s a gift that is astoundingly rare.

Categories: LDS Mom of Autism | Leave a comment

First of November Gratitudes

Hello!  After being in the shop 3 times in the last 4 months, Apple decided to value a long-standing customer and made it all good.  I am baaaack!  (Amazing how much we get attached to our connection to the world.)  So even tho it’s late, I wanted to start off November with a bit of gratitude.

Halloween 2015

First, I want to say that even tho’ Halloween is quite disruptive to schedules and sensory struggles;  I have been very blessed to find ways to make it a good memory.

Halloween 2016

We have totally fallen into a great tradition of my two girls pushing a neighbor friend around to the houses on our street- sharing the trick-or-treating fun.  (And of course it makes for a great excuse to enjoy costumes too. 😀 )  It also give us moms a chance to catch up on each other’s busy lives.   She thinks we are doing her a favor, but the truth is- the chance for my sweet kids to learn the joy of service is a big deal to me, and very high on my priority list.   So today’s gratitude moment is the joy of good neighbors and the fun moments of Halloween Service Projects.  (And having my computer back too.)

Halloween 2017

Categories: Midnight musings | Leave a comment

Good Moments

Well.  My laptop is in the shop for the third time in four months, the tire shop did a lousy job of realigning my van’s tires, and fibromyalgia is messing with me big time today….BUT the laptop is still under warranty, I can sort-of write this post on my iPad, now that I figured out how to transfer back and forth.  And my awesome Hubby fixed my van. So I decided I needed to take a moment to share some good.

First-  So excited to let everyone know I officially have 2 missionaries now!    My TeaRose has all the paperwork done, and the place of Service found; she has even spent a few days with her knew mission Supervisor and blown her away (in a good way). People are still so surprised at how smart kids can be and still be obviously on the Autism spectrum.  But we blow away myths pretty regularly around here.  And for right now,  I am so excited for her new adventure.    Also, my other missionary has a new assigned area, he started last week.  He will be serving in our area’s ROC center, that does the preparation and follow up computer work for the Indexing part of  the Church’s Family History.  Fun stuff for this geeky mom.

Things are starting to look done in the older boys’ room remodels too.   I even tiled a shower wall and it looks totally awesome, and not at all like its only the second time I have ever done tile (don’t tell him). DK is really picking up speed in his homeschool efforts, and Kydee was amazingly brave all thru yesterday’s adventure of getting braces. (Tho not up to photos yet– can’t say I blame her, I’ve been just as panicked as she was.)   And to top it off, all my kids have been exceptionally calm and low maintenance this week, in fact they have really been loving on me.  It’s possibly because it is fall break here, but more likely just growing up a bit, whatever the blessing’s source- I have been really grateful to begin having bits of time totally to myself  (and the ability to think straight at the same time!) to start cleaning up the piles from the chaos of the remodel, and the overload, and everything… it doesn’t look like much yet, but it’s huge to me!  I even get to make a Wonder Woman costume this year (heehee)

So anyway, hope you all think of something good that happened this week too!  Sending you Cyber Hugs!

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

Tuesday’s Quote- Hope

“Darkness comes. In the middle of it, the future looks blank. The temptation to quit is huge. Don’t. You are in good company… You will argue with yourself that there is no way forward. But with God, nothing is impossible. He has more ropes and ladders and tunnels out of pits than you can conceive. Wait. Pray without ceasing. Hope.” -John Piper
Categories: Courage quotes | Leave a comment

Glimpses of the Profound

Me-‘Why did you come home (from church- Singles Ward) early? Did You get a migraine?”

My Young Church Service Missionary-“No.  My heart was racing so bad I couldn’t breath or sit there.”

me-“You ok?”

Him- “Yeah- I got up and bore my testimony today.”

Not much can cause a cascading rush of emotions in a mom quite as good as that.  I am totally aware of the courage, and the spirit, it would have taken for This one of mine to get up and speak in front of others.   As super smart, loving, and deep thinking as he is; still,  getting words to cross that mysteriously semi-broken brain-to-mouth barrier is one of his biggest hurdles in his own, personal grab-bag of ASD struggles.  Anyway, I mentioned that I wished I could have heard it.  So he told me what he said.

He said he was waiting for meeting to start, and happened to open the hymn book to Hymn #235, and also that he thought of Hymn #185.  He said he felt so strongly about what those verses said.  So he got up, and started with the saying “A song of the righteous is a Prayer unto me” and Read to the congregation verse one of 235, and verse three of 185… And finished with his testimony that words have power and closed and sat down.

I was happily amazed.

Then thought.  The second one I had sung many times, but not the first– in fact I can’t remember ever reading it.  So he looked it up for me, and read the two hymns together for me and then I was Thunderstruck. Have you seen them?   I will dare greatly, and copy the verses here as he read them…

“Should you feel inclined to censure Faults you may in others view,   Ask your own heart, ere you venture, If you have not failings, too.  Let not friendly vows be broken; Rather strive a friend to gain.  Many words in anger spoken Find their passage home again.””Bid thin heart all strife to cease; With thy brethren be at peace.  Oh, forgive as thou wouldst be E’en forgiven now by me…”

The feelings in my heart were powerful.  It was my daily reminder that our kids think deep thoughts. Totally makes everything worth it to be able to see those glimpses of eternity peeking thru.


Categories: "only with Autism" Adventures, Service Mission Moments | 3 Comments

Early Morning Courage

Praying this morning for the courage to get up- I felt a prompting to hunt down some new quotes to share.

“To me, courage is not a specific set of skills that can be taught. Courage instead is the combined elements of the human condition. These combined elements are composed of caring, compassion, service, kindness, and love.” Byron Pulsifer,

“Wholehearted living is about engaging in our lives from a place of worthiness. It means cultivating the courage, compassion, and connection to wake up in the morning and think, No matter what gets done and how much is left undone, I am enough.” Brené Brown

“Truth be told, you will never really know just how strong and adamant you are unless adversity strikes. Then you learn courage, you build resilience, you learn to persevere, you build character. “- T Whitmore

“Boldness is the courage to trust that God will keep his promise to us to show answers to our prayers.”- Lisa Rusczyk Ed.D

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Summer Courage

“The courage of life is often a less dramatic spectacle than the courage of a final moment; but it is no less a magnificent mixture of triumph and tragedy. “ ~John F. Kennedy

It’s been one of those seasons in life-

But there has been growth too. For instance, I took my younger 3 to Phoenix Comicon at the start of summer.  Dealing with a crowd of several thousands took a lot of energy to stay calm, for all of them. And then we just crashed and I don’t remember the next day.   But they all had fun in a learning sort of way.   Big plans have already started for next year.

We have also been trying to finish the remodeling of house- it’s almost done- in spite of the heat.  In the mean time, courage quotes keep me going…

“Valor is stability, not of legs and arms, but of courage and the soul.”  ~Michel de Montaigne


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

A Saturday Courage Quote

Tonight,  in the care of family and loved ones, I am ready to start up my habit of posting courage quotes again…
“Sometimes the biggest act of courage is a small one. “ ~Lauren Raffo

A rare Arizona rainstorm.

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