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.
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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.
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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,
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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.
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 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

Careful what you ask for….

butterflypixie:

Saturday morning ponderings

Originally posted on Digging for Gold amid Pyrite - finding the good:

A little while ago, I went with my teens to their Stake Youth Conference.

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Talk about Awesome!

I am very impressed with any pile of leaders that can pull off a fun and spiritual full-day event (and I hear they did it with very little advance notice.) There was even a special table at the meal lines for Gluten Free needs.   <3

The very best part, of course, was the Fireside that night. The theme was Overcoming Trails, and guest speaker was Josie Thompson- you can look her up here- and if you ever get a chance to hear her talk, it is well worth all sorts of effort.  I learned a thing or two that night.  When our dear speaker talked about her dark moments as being times when she couldn’t see or touch the world- my sweet daughter leans over and says “Mom- just like me during…

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“With the Light” A reader’s review from a new perspective

I have had moments to wonder why Manga is so very attractive to my kids.  They read very well, but if given the choice- it will be manga.  Well,  I started finding out from my hubby and my kids, that they think in pictures- and they feel like speaking in English is like translating from their first language (pics) to a second language (words).  And suddenly, it was not so hard to understand; reading in your native language is a happy place.

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Now- My sweet TeaRose found a book at the school library… and it’s pure love.  Not only Manga, but is a lovely little story of a young mother’s efforts to raise a severely Autistic boy in modern Japan.

She has these (the first 2, so far) in the place of honor on her night table, after she asked me to read it too, of course.  Then she started asking me very good, direct questions of the “was I like this” and “what are the other ends of the spectrum like with this” sort.  She says it has helped her a lot, and everyone should read it  :)  and, well- it is actually a good read   (if you are willing to read from the right hand end of the book to the left, Manga style.)

Categories: Favorite Books, Guest Posts (seeing the Autistic perspective) | Tags: , | Leave a comment

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.

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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.

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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…

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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!

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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,

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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…

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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.

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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 .  :D

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.

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

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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

good morning courage quote

It’s 6:20 am–and tho cars are buzzing outside, inside is still tiny slice of absolute calm.  So, for this tiny piece of quiet before the whole house wakes up- I thought I’d share a few courage quotes from one of my daughters favorite heroes-
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“It is for us to pray not for tasks equal to our powers, but for powers equal to our tasks, to go forward with a great desire forever beating at the door of our hearts as we travel toward our distant goal.”
 “Life is either a daring adventure, or nothing.

“Faith is the strength by which a shattered world shall emerge into the light.

–Helen Keller
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to Stand

Originally posted on butterfly kisses and pixie dust:

Here in this solitude I stand, if only for a moment, if only in my dream,

to melt away in a sea of mist my daily load of pain.

Lord, still my heart, take my hand; give me strength to face dawns gleam.

My loved ones need more than I have tonight- tho I don’t wish to complain.

Buttress my wall, my anchor dig deep, make me a tool in thy mighty hand.

Help me to show them thy ageless Love,

Help me to help them to STAND

-by Shareen Halliday– Sept.2012- renewed and enlarged, Feb. 2015

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Sunday morning Scripture

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I was reading this today

Mark 4:

37 And there arose a great storm of wind, and the waves beat into the ship, so that it was now full.

38 And he was in the hinder part of the ship, asleep on a pillow: and they awake him, and say unto him, Master, carest thou not that we perish?

39 And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm.

40 And he said unto them, Why are ye so fearful? how is it that ye have no faith?

Some years are stormy years.  But comfort can come, the Lord’s plan is not always to calm the storm.  He is interested in preparing warriors and building strength of heart and mind, and these things need different blessings.  But his promises are sure.  It may not be the kind of peace we are looking for, but if we trust in him, we will be able to see His peace is truly there…

John 14: 27 Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

Categories: Courage quotes, Midnight musings | 1 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.

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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

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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.  :P

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

Cry in the night

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A cry in the night
Is anyone listening?
The pain fills my heart
Does anyone care?
I whisper a prayer
…as I feel my soul shaking.
Then gently I hear
Someone REALLY is there!
Shard Halliday  -May 16, 2011

Categories: Poetry | 2 Comments

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