Monday, November 20, 2017

The Looking Glass of Autism

Alice Through the Looking Glass, like Alice in Wonderland always felt like it was born from a feverish nightmare.  If not that then from Lewis Carroll' migraines or perhaps epilepsy as he was rumored to have suffered from. I  wanted to understand how it was such a classic so I went where all people go when they have questions - Wikipedia - the most relied upon source for unreliable material! When I understood it's many references to literature and chess I began to understand a little more its appeal.  The storyline is  the looking glass or mirror is an entryway to another world that is a reflection of Alice's own. As with all reflections, things are reversed and never quite what it seems.  Try writing a word that can be read properly using a mirror and you will know what I mean.  Your mind bridges two worlds - your end goal to be seen in the looking glass while your hand moving in opposition to what feels natural.  Only in going back and forth between the two images are you able to achieve your goal.  In so many ways  I am a bridge between the two worlds for my son of what is neurotypical and autism, I am that swinging pendulum.

My beautiful son Elias exists in the looking glass world.  The deeper he in in that world, the more withdrawn he is.   Things are not quite what they seem, lights and sounds frighten him and you're never sure which ones they'll be.   Certain textures use to create a gagging response even when only touched by his hands.  Things that seem comforting to him seem too intense to us.  His world is reversed.  Most of us exist on the other side and to us his world seems strange. 

I find myself navigating between these two worlds, trying to help others reach him and understand him.    The moments he is spinning happily, going up and down stairs or playing with doors makes these moment obvious.  The explanations are unending and they now come automatically as we try to get through the day. It is a busy labor of both heart and mind.  

Occasionally I feel that ever so slight pause at the peak of the pendulum and time seems to pause on one side of the looking glass or the other, these are the times I tend to feel the greatest pain as a parent.  I felt it a great deal on our recent vacation.   While at a museum Kent was off  playing with the other children  while I had found some glass doors for a Eli to amuse himself.  Pulling them open and stepping back to watch them gradually swing into place, he grins in shear atticipation and with a burst of giggling at the moment of closure.  His laugh as always evokes my answering smile at his deep pleasure.

It was then I chose to look through that window. A passing class of children gazed with undisguised curiosity.  Beyond them I saw my family playing happily and they felt like a world away.  I wasn't there sharing in the moment, I wondered if they'd become so use to their parents being separate in all our outside activities that they didn't miss me.   Did they miss Eli, did they wish he could be there to join in their games?   I. missed them, I missed feeling we were altogether a family sharing in our experiences of the world. Instead I felt like I was trapped on the other side, looking through touched by the heart but untouched in body wondering when we might experiencing and sharing on a connected whole family.   I mourned his diagnosis all over again.

Then there are other times when we all seem to be in front of the looking glass.  Even Eli is prepared to be there, reaching through to touch his siblings on the other side.  These are the times I feel some of my greatest joys. When we exchange raspberries on each other's bellies, when we 'blub bulb' with our fingers on our lips and end with a resounding "Tada!" That would evoke a round of laughter. The best ones are where he reaches out in his own like recently on a hike when Eli took his older sister's hand.  Her surprise and delight had stopped her in her tracks to loudly declare ," Look mama, Eli loves me!!"  He responded with his typical side head tilt into her arm as if to say, "'Of course I do!"

So if you ever wonder why it is I can swing from joy to pain in a single moment it is because of these two worlds I bridge.  The funny thing that I've come to understand is that we all have our own little looking glass worlds.  They are not as obvious as Eli's and not always as isolating but the connections that are made at the border point are the ones that help us bear through the loneliness.  More than that we are not so different from each other but our realities are, the struggle is to not let our realities define us or others.

As cute as he is now, one day he will be a man and I will not be always there to bridge those worlds.  Will he come to the looking glass and find anyone there?  Will he reach through and find that connection that gives his life meaning and worth?  Will it be only a few or will we have built him a community? 

Will you come to the mirror?  Will you cross that bridge for him.  It becomes easier each time you go and as you understand him you will see him for the beautiful individual he is.  I love him with all my heart and the more you take this journey with me, the more my mother heart can rest assured in the future - a future of greater understanding, compassion and grace.  This is the prayer of every special needs parent.

Monday, November 6, 2017

Judo, Chess and More!

The days and all our activities fly by so quickly I'm often afraid they'll be forgotten if I don't record it here for my kiddos.  Bug had a big achievement the day we left for SLC.  She competed in her first judo tournament and while she lost the match, she was actually given the most points and was awarded a medal.(unfortunately it was lost in transit and she never got to see it)

It was an anxious day for her but we knew she'd do wonderfully once she got there.  We took care to keep things relaxed and to get there in plenty of time so she could warm up with her friends and they could get her familiar with the routine.

All the flip flops left a the edge of the mat had me chuckling.  It looked like massive party at an Asian's home!

Everyone bowing in.

Our dojo is run by a man in his 70's named Larry Gaines, otherwise called 'Mean Sensi' by the kids.  He's a grandfatherly figure who loves to treat them to gifts from his trips and candy during holidays.  Unfortunately he had a hunting trip so another Sensei stepped in to coach Keila.  He could tell she was extremely nervous but once she was on the mat he said she did great, especially given her opponent had more experience and that this was her first time.

Admittedly all such activities need a bribe in her case.  She loves to 'collect' living things (that's how Kent puts it!) and was eyeing a pink-toed tarantuala initially.  I was a little uncomfortable with the choice (can you blame me?!)  We readily consented when she changed her mind to a beta fish which she has named Coral Golden Montierth.  The things we do for children!  Not long after she earned her yellow belt.

Otherwise our days a spent between therapies and homeschooling.  On some days it feels like everyone is getting therapy all at once.  Bug was helping Bubby feel secure in this different swing by distracting him with his favorite game.  Of course everyone else needed in on the action and before I knew it they were either swinging or spinning.  It's makes me a little sick to watch Bud but with everything I've learned about child development I now know these experiences help them develop awareness of their body.

I love some of the educational toys they have there.  If I had all the space in the world and the money for it ....

Isaac has been busy with an online chess class.  He absolutely loves the tournaments and it's been a humbling experience since he's up against some pretty amazing players.  In general he's lost most of his games but he enjoys the mental exercise and learns a great deal from his opponents.  The tournament he played in today he tied for third place and qualifies for the more advance class.   We have him do extra chores around the house to pay for these tournaments and his eagerness to do the task is a testament to his love for the game. 
His engineering brain can't help but build ALL THE TIME!

For Halloween this year Bug requested to be a blue jay. She helped as much as possible and did all the glitter work on her mask which she was so proud of. Thankfully everyone else had fairly easy costume requests.  We tried a more elaborate pumpkin this year and Bud ended up doing most of the work. The perfectionist in him was bothered that a piece fell out and vows next year to do a better job.

The homeschool coop is still continuing.  Admittedly there are days when I'm tired and a houseful of people seems like more than I care to take on, but at the end of it I'm so happy to see my kiddos having fun and learning so much.  Best of all I've seen some real growth in Bubby as he has slowly joined in some of the activities.

One of our days we attend AZ on the Rocks for their Homeschool day.  Thankfully we meet up with some friends from church and they literally showed us the ropes.

For all his fear of heights Bud did great!  Bug was in her element, and daring to do everything.  I managed to get in one climb up but the two littlest were too shy.  Perhaps next month!

Our days alternate between therapies, coop and just doing the basics of reading, math and spelling.  On and off we get in a little something extra like Dia de los Muertos.  As we made the papel picados we got a side lesson on symmetry (bilateral and radial)  They enjoyed learning about another culture and it gave us time to remember some of our loved ones who have passed.

It's a good life.  Insanely busy, but wonderfully so.  Glad to have these munchkins to make these memories with and to celebrate all their achievements.

Wednesday, October 25, 2017

Three Years Roll by for Pumpkin!

Thus little doll of mine is officially 3!  Being the youngest in the family makes you grow up fast as you are endlessly trying to 'catch up' with you siblings.  Also being the sister to a special needs brother really matures you quickly and so the number of your age is never truly indicative of your soul.  This girl has been 2 going on 18 forever!  Perhaps it because I'm too tired and busy with the others, or perhaps it's because she has so many roll models, but much of what she does is a  matter of her choice and not ours.

Take potty training for example.  There are days when I'll suggest it and it's a firm no that when I push becomes an anxiety ridden experience for all of us with little successs.   On the other hand if it's a day she consents of her own than this is hardly any accidents and I barely need to do anything aside from keep her entertained with a YouTube video in the tiled area and she will train herself , hopping on and off the potty as needed with on,y a few gentle reminders of proper hygiene.

Watching Bug do judo she was thrilled once It was offered into class by Sensei.  She quickly and dutifully learned her falls, impressing all the other students.  Her size and age are yet too small to practice much in the way of taking others down and she has since grown bored of only doing the falls so she goes to class as a social thing.  If her friends aren't there she has absolutely no incentive and nothing can be done.  Once they're there she becomes their little mascot to rally around and playfully wrestle on the mats.  They often tell me how cute she is and how they wish she could be their little sister so if she ever was lacking in older siblings she has a classful now!

With homeschooling she is quickly exposed to all her numbers and letters.  She loves playing with the Bananagrams when I'm working on spelling with the older two.  She recognizes all of them and is actively learning their sounds now.  Sometimes she can be heard to coach Bubby, much to his irritation, and like a little sponge she is trying to 'read' to herself.  My favorite was when reading aloud The Hungry Caterpillar and she could be heard to say with great emphasis, "but he was STILL HUNGRY!"

The perks of being young is that you are free to say what comes to mind with little thought to social implications.  She overheard me reeming out the older two and came up to pat my knee.  Looking earnestly into my face she said, "Mama, you fuss-rated?  Sorry.  Okay, time to move on, read me a book?"

The night before her birthday she had a special dinner out with just Mama and Baba.  We stopped to pick up her special gift at Build-A-Bear that she lovingly named Fluffy Bunny.  The following day we spent at the Family Fun Fair where she played games and ate cookies and candies to her hearts content.

Everytime she was asked what she wanted for her cake her list would grow longer and longer.  I quit letting the kids ask her for fear I could never meet her request.  It was a bunny, butterflies, flower, rainbows and clouds cake.  This was my best attempt, particularly with so little time to prep after our SLC trip.  Thankfully she's pretty easy to please and we shared it with a friend from church on sunday evening.

We are so grateful to have her in our lives.  Three years has flown by so quickly and she keeps us smiling with all her little spunk.  You are our pumpkin doll and life is so much better with you Leora!  Happy Birthday my little love!

Monday, October 16, 2017

Good Old Salt Lake City

Nearly 9 months ago we planned a week long vacation out to Salt Lake City.  It was a chance to see some family and friends and show the kiddos the area I had spent much of my college years.  About a month ago I discovered that my brother James would be down from Canada the exact same week for a marathon he was running in St. George.   It really was such a blessing to see him, Sam and their two little ones again.  Reunions with friends, a family dominated our trip interspersed by sightseeing, exploration and heaven forbid - learning!

On the way out we stopped in Vegas to see my old roommate Kari.  Our kids are close in age and although it was only for a few hours it was wonderful to eat dinner together and catch up.

The following night was a massive Asian ward reunion held at Sean and Lareen Luangrath.  Our kids ate and played while I got to meet my friend's spouses and we could reminisce and joke about our college dating years.  As always it was a massive potluck of everything that I have missed eating for the last few years.  I'm pretty sure my entire weight gain from the trip was from this one night!  Jokes were made about who serenade all the girls, who swore they'd never marry a Caucasian (and eventually did!) who dated everyone and who married young enough to scare their parents into thinking life ended for them.  Time does change one's perspective.

These boys sure were hungry for ice cream!

There were also discussion about people who had passed on, trials and struggles of those there or those we kept in touch with.  Flipping through old photo albums was sobering to see how fleeting life is and how intense truly living can be at times.  These  people were my family in so many ways and for so many years.  They are still the people I tend to miss of from my fancy free days of youth.  I truly love that I can reconnect with them as if the 20yrs had never really passed us by.

The first museum we saw was The DaVinci.  It's focus was on art, science and creation.  It was an excellent start for us since it was quiet and not too overstimulating for Bubby.  We wandered Temple Square for a bit in the afternoon.

This preying mantis was nearly stepped on but my girl was thrilled to see it camouflaged among the fallen leaves and saved its life.

The following day we spent with my brother James and his family at the Natural History Museum near University of Utah.  Kent and I were split, either one of us spent the time wandering with Bubby on stairs or playing with doors while the other supervised the 3 muchkins or took pictures of the cousins together.  In all the hub bub I never got a shot of Sam and James with us.  It was nice that our timeshare was so close by that we could have lunch and some downtime there.  It was nice to just chat with Sam and James.

The following day we also spent together at Temple Square and a dinner with Matt and Aunt Margaret.  I don't think there's been a single time I've been to Utah and not seen Margaret, she is most certainly adopted family.  They so kindly spoiled our children with small gifts, food and attention.  We are so blessed to know such good people.

Herding kittens was the phrase used to describe this attempt at pictures!

The following day we went to the Museum of Curiosity at Thanksgiving point.  Three of the kiddos could have lived there!  Bug took advantage of their ropes course, Pumpkin got over her fears and climbed a few rope bridges with me.  Bud was making friends on his own and playing happily. 

I love how big sister is helping her out and her oh so serious expression as she collects the water.

Only Bubby really struggled with things, there were just too many people, too many activities and lots of noise.   While the others would have loved to stay longer we took time off in the afternoon to do a small hike in canyons to see 'real' fall leaves.  It was cold and our AZ blood was ill prepared for the 'wonderful' weather.  We had a blast all the same and hope to make bookmarks of the leaves we collected.

Our final day we spent near Brigham Young University, my old alma mater.  The Bean Museum that I had spent my days at for my entomology classes had been redone and was beautiful!  It was gratifying to see Isaac really stop and read and learn from each othe displays.  It makes the ideals we have of learning is a part of living come to reality.

  Ice cream from the BYU Creamery was a must and while Kent and the other kiddos hit the dinosaur museum, Bubby and I wandered student housing nearby.

Later that evening we spent it with Kent's sister, Stephanie and Keith.  The cousins hadn't seen each other in over 4 years and they had never even met Pumpkin.  It was so good to see them and catch up on family and upcoming events.  A simple meal shared, some nerf guns (never got pictures of them shooting each other!) a little backyard play makes for a wonderful end to a lovely trip.

We are so grateful for all the friend and family that made the trip so fun and memorable.  The museums and sights are nice but they always pale in comparison to the people along the way.