“only with Autism” Adventures

Mighty Wins Often Come in little packages- Watching for the Good

After a long, hot week here in Arizona (115 plus) along with all the normal stress of a weekend, I had a lovely string of success moments that made me really feel grateful. And since my lesson in primary today was on sharing, I had to share my awesome tiny victories of this evening.

  • Oldest smiles and tries hard to laugh with sibs even tho a migraine is raging.  Then he catches his dad in private and whispers “Thanks Dad, I really like talking with you.”
  • DK says “Can I watch a movie please?” (note full sentences and manners- especially after a hard weekend and church)
  • Hubby says “Did you like me talking it thru calmly till we figured out where our miscommunication was?  I am really trying to learn good communication, I’m not perfect but I’m trying”
  • TeaRose and I have been newly called as primary teachers together.. she was really panicking, but afterwards today- she admitted being around the 6 yr olds was very fun today.
  • Brand made it all the way thru the full 3 meeting block of YSA (young single adults)meetings, and stayed for their after church mingle to get some of his home teaching with his partner done.
  • And the house is quiet and at peace.  What a great way to end the day.

IMG_1321

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

Summer! Reflections on the Good, the Bad, and the merely Difficult

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.

P1030206

Golden Scholar Awards

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.

P1030200

End of year ice cream

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.  IMG_2255This 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.

IMG_2392

art all wrapped for travel

P1030316

the Hanging Event- with help from my awesome boys.

IMG_2401

And hubby – playing for the camera, just for me.

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.IMG_2425 Something good about spending time with people who have a true interest in your life and how you’re doing.

P1030455

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!

IMG_2470_2

how do I pick just one photo?!

IMG_2503

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.

Categories: "only with Autism" Adventures, LDS Mom of Autism | 4 Comments

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.

 

P1020524

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.

P1020499

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 🙂

P1020548

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)

IMG_2077

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

P1020598

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.  🙂

P1020582

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

November Gratitudes

(A few years ago, a friend of mine introduced me to the fun of posting one thing I am grateful for, every day of November till Thanksgiving.  I have seen a few variations, all of them are wonderful- they all lift the heart.  This year I’m going to work on my Gratitudes Game here.)

Today I am grateful for a great neighborhood.  It is a very relaxed place for special needs kids, probably because there are several families in a row that have special needs of one sort or another.

P1020298

Whatever the reason, no one bats an eye at a 6 foot tall Minion, or an Elsa that is almost that tall.  I had a great time with my neighbor as my daughters had fun pushing her daughter’s wheelchair up and down the streets.  We felt led to this house when we moved here, tho I didn’t know why- this is just one of the moments I have found to be grateful. ❤

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

Stress is Like a Soda Bottle

bottle-explosion-98e50b1144004cbb3f59213b2f0b56b0587c1a2b-s6-c30

FINALLY!  Yesterday was the last day of this school year– I can almost believe we made it!  Sitting, watching “Bill and Ted’s Most Excellent Adventure” was still not quite calming the jitters left over from getting everyone thru to the end of the day.  It took a lot of hug time.

And what a day- talk about going out with a bang- I had to enlist hubby’s help to get everywhere, tho’ it wasn’t all bad… First, TeaRose to school for the last day of 11th grade finals, (she is still emotional about her less than good English grade, but happier with the other classes and their willingness to help her pull things together thru her overload times),   then to Jr high, and photo’s for Kydee’s awards, 1st half- but I couldn’t stay, ’cause I had to run over to a second high school to sign papers and have a mini IEP with their spec-ed team- going to try school again for DK, he needs out of the house and I am overbooked for my ability to keep him going in schooling (10th grade) especially with this coming summer(more of that in a bit).  It’s a second High School because the one we have as our district school is a smaller school (which I love, and where the girls are) and it does not have all the services he needs- only the bigger one has classes that are for normal, grade level (or above) course work yet still small classes et.al. … then back to the Jr. high for the rest of the awards- and then home to get everyone lunch.

Phew! Of course, after lunch- I took the 3 younger ones to celebrate with Ice Cream- they sure deserved it!

IMG_1829

Yay for sticking it out to the end! Next year will be her Senior year! Coolsville and Unbelievable all in one.

IMG_1825

Next year will be 10th grade! So much will be new- hoping it adds up to an awesome year!

IMG_1828

And my new Freshman! Totally out of Jr High- nothing but High School left. WOW!!!

Beautiful TeaRose went into aftershock shakes and crying before the end of lunch.  By evening, it was 3 times.  She said thru her panic tears- “I don’t know what’s wrong!  I don’t know why am crying.”

So then came the “Soda Pop” lesson.bottles-of-soda-pop-cola-jpg

“Do you know how when we shake soda pop bottles, it’s like they store up all that fizziness, ready to explode when we open it?– We are like that too.  When we have heavy stress, it’s like shaking a Soda Bottle.

slomoliquid-082312-05

This last bit of the semester and finals has been like shaking the bottle A LOT.  And suddenly stopping and relaxing can be like opening the soda bottle.  Not just you- it’s a know fact that a lot of people get cold and flu at the start of their vacation…

Soda+Explosion

The way to fix the soda and us is the same- it just needs quiet time for a while to calm down.”

“Oh”  (and lots of hugs)

It made a lot of sense, and still does.  Sometimes it feels like there are seasons in our life when the Lord is really pushing us to the edge for maximum personal growth.  I heard a saying the other day- “why do things come in clusters?” but I got thinking, and I think that the Lord knows our time here in this Earthlife is not long, and I think it is more like “Shaking the Soda Bottle” of our learning curve, as often as he can- and then letting it rest when needed to keep from the explosions that might not be good for us.

145958938-caution-exploding-soda-bottle-gettyimages

It doesn’t have to be much- Some of MY rest periods are courage quotes, scriptures, and mini funny moments, or moments of awesome clarity (sometimes they are both)- they get me thru- so before I end this post, I thought I would share a couple from my journal this last month—

May 7th- Brand- “Thanks mom for putting up with me when my intellect turns on and off”
(Me- “I wouldn’t say on and off- it’s more like you have a door that opens and shuts your access to it.”)

And again on May 7th- Ryan was telling me that they have found documentary proof that medieval knights also got Post Traumatic Stress Disorder.  I said – “you know who else they have found gets ptsd?”  He said “who” I said “moms of of Autistic kids.” To which he replied- “I don’t think there is anyone in this house that has Autism.”  🙂  I did manage to keep a straight face, but also told him to look up the high functioning end of Autism, not the low functioning end- but I am really going to have to make a poster or two.

This week, Brand came back to the subject… “Mom, I’ve been thinking, maybe I might have had some of that ‘Autistism’ stuff in high school”- (me-sincere, straight face, very important)  “but,” he kept on, “the word Autistic is very “toxic” right now.  If it ever enters a conversation… (trying to say-all my efforts are lost.)”    There you have it- wisdom from them who know.

So, you know,  prayers are pretty constant for me-

This morning I had a beautiful flash of insight- remembering all the years of coaching kids thru their prayers, there were significant amounts of times that I would have to tell them to think of 3 good things every night to say thank you for… And it suddenly translated into making a place for teens to play a similar game of one good thing every day for the summer.  I am excited- I think this will be good.  Already my TeaRose is on board.  She looked up baby-giggle videos to share- which got us sitting side-by-side on my bed, a laptop each; and me coaching her thru the details of deeper navigating of face book – and ended in a “poke” fight that went to a tickle fight– and released the rest of that soda bottle for her… I love my kids.  So grateful for Heaven’s Help to get them thru this mountain of life.  Keeping on-one day at a time.

Love ya-

(oh- p.s. note… while looking for photos, I found an amazing science project site… going to have to do this one during this summer…http://www.stevespanglerscience.com/lab/experiments/mentos-soda-popdrop

Categories: "only with Autism" Adventures, LDS Mom of Autism, Midnight musings, Parables | 1 Comment

The Allegory Of Bathroom Stalls

I told my mom yesterday how I explained their Autism to my kids, and she asked me to write this up.  so this is for her.
DK came to me sometime -oh – almost exactly two years ago now, (time really does move on, amazingly)  and he asked “Mom; Do I have Autism?”  Yes.  “What’s Autism?”  The question of the era, right?  But what if it’s not a doctor with lots of education doing the asking– but a 13 yr old trying to understand himself…   Well- that was one of those golden moments of inspiration; here we go.
 Bathroom-Stalls-1
There are all kinds of bathroom stalls in the world–
There are the tiny little Kindergarten ones that seem big when you are 5, but are actually pretty short when you grow up.
 GW BUSH Stalls 2
There are the slightly bigger walls in the elementary schools.
There are the “almost-tall-enough” stalls in the high schools 🙂
The tall, nearly private stalls in movie theaters,
 Bathroom-Stalls
And even the incredibly tall, fancy, stall walls in the nicer hotels.
Autism is like the wall around a Bathroom Stall.  The person is just a person on the inside- but he is locked inside a wall that interferes with how well he can see and understand and communicate with the people on the other side.
Some people have very short walls, like those kindergarten walls.  This is like the end of the Autism Spectrum we call High Functioning.  (“where you are, my son”)  For people inside this kind of bathroom stall, when all is calm and normal, they can see over the wall really well.  They can talk and giggle and interact with the rest of the world without anyone really noticing the wall between them.  But if there is something surprising come up, or they feel sick or in pain, or something hits their trigger– it’s like a bit of wet floor, and they slip and fall.  There on the ground- not only do they hurt, but they can’t see over the wall, either.  It doesn’t matter how short or tall the wall is,  they still can’t tell anyone what is wrong or even get comforted until they recover enough to get their feet under them and stand up far enough to see over the wall again.
Some people have really tall walls.  That doesn’t mean they aren’t any less of a person inside, it just means that they have a hard time seeing over the wall.  All sorts of modern knowledge and efforts have been used to try to help.  Most therapies are designed to either work on the communicating (talking to the people on the other side of the wall) or interaction part of their struggle.. it’s a false notion that it opens the door; it’s more like giving them a step-stool to stand on so they can see over their wall.  Then they can be part of the world, as long as they are feeling steady.
 bldtr040074
 On the other side of the wall, there are all kinds of people too.  There are the ones who only come into the bathroom to look at themselves in the mirror.  They don’t notice anyone else in the room, so don’t let it get to you if they don’t look at you either.  There are the ones who have all their attention grabbed by the efforts to see themselves over everyone else’s heads, and they are unkind to whoever gets in their way.  It is not your fault- let it go.   And then, there are those who come into the bathroom with approachable hearts.  They look up and see you in the mirror and are willing to say hi.  You will find some of these, and more as you get older and they do too- People grow up, and the more they grow, the more they can see past the end of their own problems enough to be kind.  It’s hard work- but no one wants to feel alone, so we try to see over the wall.  Have patience and be kind.  It is worth it.
Categories: "only with Autism" Adventures, LDS Mom of Autism, Parables | Tags: , | 3 Comments

High-School, Disneyland, and some Things I have Learned

I’m sorry I haven’t written much lately.   I have tried writing this post half a dozen times since I started it late last December.  But even tho it’s a little late, I think I still want to finish, because I feel like there is something here that is needing to be shared.

IMG_1915

Have you ever had one of those school years that just has no other words besides hard, hectic, no rest, etc.?  This is one of those years.  A quote from the movie “Sky High” seems to pop into my head a lot– “If life were to suddenly- get fair-I doubt it would happen in High School.”   I mean, the feeling of drowning is getting easier to bear, because it’s so normal.    At times, it has been so hard not to feel like I get nothing done.  In retrospect- keeping everyone going and sticking with it to the end of the semester,  has been my only available agenda for some time.  Just Mom-taxi to/from all the schools is minimum of 40 miles a day- and doctor appointments can more than double that.  Coaching one-on-one help thru homework usually takes what ever is left.

Getting the kids (and me) thru school stress means LOTS of hugs, LOTS of prayer, keeping the lists and calendars in more than one place (kitchen wall and in my purse at a minimum)   Plus a running list in my head to make sure I don’t leave anyone’s needs out;  getting the scriptures on audio, because I’m too tired to read;  and showing my sweet ones how to squeeze in the search for joy amidst the everyday things.

IMG_1440

And, you know, just like for anyone, Joy for my kids is also found – in the feelings of success -in watching for those moments to be grateful for- and service.  Searching for joy is really hard when you’re tired; but we have managed a few great moments–

Here’s just a few…

The remodeling is coming along very slowly- but weekend visits from my folks are so exciting in bringing visible progress…

IMG_4371

A December success moment; we have a new door…

One of December’s success moments– DK had to make a Globe Theater model for his Drama semester final.  Since it was so close to Christmas, we decided to make it out of Gingerbread (gave me an excuse to keep up my gingerbread tradition) It was a very fun way to handle an unavoidably hectic 2 days!

IMG_1931

and it got a good grade- plus the fun of lots of oohs and ahhh’s! 🙂

I always make sure to watch for awesome clouds and sunrises while we drive,

IMG_1998

and my kids have learned that I like to spot birds.  It cheers me up, and they help me keep my finch feeder full.  Best birding day ever was just this last month…

IMG_1901

My phone camera doesn’t zoom enough to do this justice, but this is a Bald Eagle that is visiting the field by the kid’s High School!  He was about 80 feet away from me.  Also in this field, but giving the Eagle plenty of space, are Ducks, tons of White Egrets, a few Sand Pipers, a Blue Heron, 6 Vultures, a whole flock of starlings, the odd, common Brown Bird here and there, and a small Hawk that I haven’t identified yet. Kinda one of those days that you feel the Lord is aware of what you are going thru, and sends a tiny miracle to cheer you up.   🙂

Service Projects are one thing that I try very hard to make a priority during stress times.  It sounds weird on the surface, but not really.  Losing your focus on self for a tiny bit, and helping someone else, brings the Lord’s help- sometimes in a big enough way to allow me to point it out to the kids.

IMG_4379

preparing bottles of home-made vanilla to give away at Christmas time… Science and service project rolled into one- totally something my kids could get into.

And then- (drum roll) we came to finals week; but, you know, the last couple of preparing weeks before-hand were grueling.  This year has been especially hard on TeaRose.  Trying to cope with 11th grade mainstream is hard for everyone on occasion;  but adding in Autism stress, and sensory integration problems has really had her running from tears, to non-verbal meltdown, to more tears, and starting to spike stress-fevers at all kinds of odd moments of the day.

With the rest of them stressed over school too;  and all of them in the house together– it’s one of those recipes for cabin fever of the 99th magnitude.

Finally, the kids needed a break so badly (and me too), so Mark gave me the incredible gift of a quick jaunt to Disney Land. We chose to take a sick day from school (I made sure there were no tests) on the middle Monday of December, which we had been told was the least busy of the year.  This is the first time we have been brave enough- and able- to take the kids.  It didn’t help the work load, but it seriously cheered me up  to sneak around packing the kids bags in secret; all the while hoping that the experience would let them, especially T, manage Finals the rest of the week.  Just fyi- you probably could have heard Kydee’s scream of excitement from the other side of the neighborhood when she found out what I was up too .  😀

Well- the Sunday of the drive came, and my oldest wouldn’t go. He told me he felt really bad about it- he just couldn’t take the claustrophobia and social anxiety.  It was sweet; he has been a little extra tender with me lately, even gingerly hugging me.  Brand wanted to ditch too, because his stress has made him freak out about being around the younger kids… but I didn’t want to let him.  I told him that learning how to be around sibs was high on the Lord’s priority list, and that if he was going to try to pull a “I’m too old” trump card, then he better be able to look at all the ramifications like an adult- and then tell his little sister himself… Finally, Mark went in and talked him into handling the trip by having him bring his earphones, and giving him access to his smart-phone to stream music.  (p.s.- make sure you know how much data that uses before you do that :O !)

The drive to disneyland

The drive to Disney Land

I held my breath all night at the hotel (figuratively) because I knew that the next day would be a day of extremes, and I just hoped that good memories would be part of them.

IMG_1963IMG_4426

Well- now I can tell you about extremes, and the Lord’s blessings…

IMG_4414

Yes- the morning was very good.  We had less than 5 minutes in any line we went to.  Even Brand was all grins with the Star Tours ride.   Eventually we stopped for lunch, and that was about the edge of the proverbial cliff…. After lunch, the volume of people in the park exploded, and the noise.  Brand was no longer willing to endure- but knew that the others wanted a bit more.  So he said he would wait for us at our predetermined spot in the park center.  I decided to catch on camera what might have set him off– and I found that the camera’s mic was overloaded; 7 different rides could be heard from that spot, plus happy people.  It was a mommy-duh moment.

On the other hand, my sweet Tea-Rose leaned over and said, “Mom, I think Heavenly Father blessed me with having a cold- my ears are all stuffed up and the noise doesn’t bother me like it normally does, so I can enjoy the rides.”  So there you have it.  Blessings in disguise, and noticed too.  🙂

Well, we didn’t stay much longer- the walking is hard on me too- but long enough to learn a secret spot for any other family who struggles with hearing-sensory integration problems… there is a little “theater” on Main Street that plays the old black and white original mickey mouse movie reels non-stop.  That little space was quiet and dim and pretty boring to most of the people who peaked in and left again… We stayed for almost an hour, while Mark and Brand went off for pain meds for me–  it was the most blisfull oasis!

So, off home we went- very glad that we hadn’t spent the money for more days worth of tickets, but also very happy with the experience. And in case you were wondering, yes it did help them get thru finals week- Major Daddy Success 🙂

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

Happy Anniversary

Well-On this day, 31 years ago, there was a blizzard of not-quite-record proportions up in Salt Lake City.  No one wanted to be out on  the roads… but I woke up that day quite oblivious to the fact that it was still winter.  Now here we are in Arizona, and it’s supposed to be another great day of no clouds and temperatures in the high 70’s (F) or so.

But it’s still dark outside, so it’s not too hard to remember WAY back to a day of incredible naivete 🙂  I look back at the few photos that have survived the adventures life has had to offer and I think; It’s a very good thing we don’t know what’s in store for us, or we would never have the guts to get started in the first place.

home172

But I am very glad I did.  Thru it all, I may have learned many things.  But one thing I want to say before anyone wakes up today, is how amazingly grateful I am to be blessed with being best friends with such an amazing Hero.  When we were young and knew less- we didn’t know any of those fancy words for what challenges the Lord had set upon my Sweetie’s shoulders.  But I did know that he loved the Lord, that he was super smart and had a great and unusual sense of humor, that he never gave up once committed, and that he was committed to loving me.  What a great list to start out with.  I also knew that the Lord had had a hand in our getting together.  These things have given me the courage to hang on for the roller-coaster ride called life.  At this point, I can say that I have learned that my hubby does not like to be surprised much, that he loves Christmas, acting, and dancing.  He loves talking to people and making new friends, he has a good eye for photography, and he has a train-track brain that will not let go of a problem till he tracks it down to the very end and fixes it- which makes him very good at his engineering job.  He also has Aspergers.  My hero has the courage and determination to continually learn new things in order to be a good hubby and dad in our home, including fixing air conditioning motors, car transmissions, clothes dryer drums, unpicking my sewing mistakes, and learning whatever his sons are into;  the humility to say sorry when he makes a mistake, comforts me when I make all my mistakes.  As we have learned together, he has found ways to describe the different and beautiful world he lives in;  and he still has a deep love for the Lord.   I love you Sweetheart,  I am so lucky.    Yup– I’ll go for another 31 years.

Categories: "only with Autism" Adventures, LDS Mom of Autism | 4 Comments

Myth Mashing- debunking Myth-taken notions- High Functioning

AAARRRRGGGGGHHHHHHHHH

49-800

Today I am seriously in the mood to do some Myth Debunking.  For this first ever episode of Myth Mashing, I am going to talk about some myth-taken ideas about High Functioning Autism.

First,  I need to back up and highlight a few of the comments that have brought me to this rather feisty mood.  And before I do that, I need to pause for a moment of true gratitude to all who have made such comments and others lately, and in the past– for you have helped me in a very real way to fight my way back up from the deep depression I sometimes struggle with- to a more sure standing position (cue “Rocky” music.)   I also want to say, with huge gratitude, that I am off the medicine that the Dr. had prescribed to try to help me with the energy needed to keep going.  It helped for a while, but not enough to make up for the terrible trouble I started having with my short term memory and thinking abilities.  It had gotten to the point that even helping with homework was barely doable, and blog writing was at an all-time stand-still.   When it started to effect my health too, I went cold turkey at the beginning of January- call it my New-Year’s change. Of course, then I had to go thru the recovery from that.  😛

Well,  O.K.    Now that I actually can think clearly sometimes, I started pondering on some comments that have been weighing on my heart… “you just need to tell your son to grow up/ stop doing that/ etc.(as is stop hugging everyone)”… and this well meaning one, “you need to not try to do so much on your own, get your kids to help”…and this one from right behind my back at a scout meeting “Oh (other teen’s name) I’m so glad you will be turning 16 this month, the boys so need a good example” (you know whose boy was already 17 at the time, don’t you?)….then there’s, “just wait till your girls get a little older and you can take them outfit shopping, you’ll have so much fun” (I can’t count the number of meltdowns a trip like that has, and would cause;  between the crowds, the noise, and being asked to choose something- oi vey!!)   …lately I heard this one,  “You’re soooo lucky that they only have a little bit of Autism”… about the same time as this one, “So isn’t he going to go on a mission?”  but the one that sparked this post was from a couple of very well-meaning sweet ladies who I had talked to a while ago about the remodeling and such that our family started last year, and that marked the end of my ability to keep the rest of my house even sort-of clean– both managed to ask me on the same day, “so, what have you managed to get done on your house lately”

Can I say there were not many tears this time- I’m kinda cried-out.

Anyway– I found this really great article by a fellow blogger mom of High functioning Autism… it says everything I want to say – please click and jump over to her site here   sorry to all who love photos and such- but Autism is an invisible disorder-nothing to look at unless we draw it ourselves, and I left the visual on her site- go look. http://parentingchaos.com/understanding-high-functioning-autism/

Categories: "only with Autism" Adventures, LDS Mom of Autism | Tags: , , | 1 Comment

Guest Post- “Why do People go to Lunch to Socialize?”

This was actually last week’s post; but I have been totally swamped.  This is just a comment that came up in our wonderfully Aspie/HF asd life, and it really is too good not to share.

-sent to me- Nov. 13 2014

Why do people go to Lunch to “socialize?”

You wait in a line, to go sit down in a room, where it’s typically so loud, that you can only hear 1/2  to 3/4 of what the other person is saying. You politely nod your head and smile… except when your mouth is full of food, which is much of the meal (especially at a normal lunch hour from work,  since you only have about 30 minutes to eat, after travel time to get there.)

So there you sit, your mouth full of food, trying to talk with people who can’t really hear what you are saying…
And if the table is large enough, then you are lucky to exchange smiles and a wave.  Tell me again;  How are you supposed to be building a relationship if you can hear almost Nothing of what is said?

Add to that the food is oddly spiced or cold or too hot.  Then we have to pay for this stress.  Can you say ‘what a fantastic experience!’    Let’s do this again next week, shall we?  … eh, no…not really.

Categories: "only with Autism" Adventures, Guest Posts (seeing the Autistic perspective), LDS Mom of Autism | Leave a comment

Blog at WordPress.com.