Spring break 2015

I was dreading spring break. Schools here get two whole weeks off every March. Two whole weeks with all five of us home, in one house.  The thought was terrifying to me. I imagined breaking up fights between the boys all day every day. I imagined being exhausted from the baby, running myself ragged all day trying to keep peace and accomplish “the list.”  There is always “the list” for spring break.  Cleaning, taxes, changing tires, it’s super long and never gets done until halfway through summer.

But this year, spring break was different.  It was so wonderful. It was so easy. The boys played together, apart, with cousins and friends, and without trauma. Penny was a doll. Just happy and easy. I am overwhelmed with how good things were. I just want to count my blessings as I get ready to face routine and school again.

– Jake ate joyfully.  He tried new foods and ate what was prepared for him.

– We took a trip to visit my sister and her family.  Her boys plus my boys is always a party, but this trip was such smooth sailing.  They cooperated, played together, took care of Penny; it was just wonderful.

– We traveled together in the van, driving long trips, and no one was car sick.  Aiden gets nauseated, but we used Gravol and he was fine.  So much nicer!  And Penny slept most of the way, only crying a little.

– We were given a free holiday.  One of my dear friends and her family rented a condo about 150km away for a week and couldn’t use all their time.  So we were able to get way as a family, free!  There was a wonderful, warm pool and playground and we had such a great time.

– Jake could touch in the pool.  With his lifejacket on, he became more confident and we were almost always the only people in the pool.  He was vastly less overstimulated than he is at the public pool.  He was nearly calm.  But his smile!  Oh!  He was so proud of his swimming and just glowed.

– Aiden started swimming independently, with his lifejacket on.  He just taught himself to swim!  Front, back, jumping in, it was nuts.  And he was so alive.

– When we were home, the weather was warm.  Usually we have snow, this year we were riding bikes in the sunshine.

– My parents took the boys for two whole days and overnight.  Saints, they are.

– We received our funding approval for the iPad, case, and a whole pile of therapy resources.  It felt like Christmas.

– We received a disability tax credit back payment.  Free money!  Seriously!  This holiday could not have been more unusual or more wonderful.

– We finished all of my husband’s marking for school at the beginning of the break, and took the remainder off to spend together watching movies, reading books, and just being together.  This never ever works out so well.  We try every year, but this time we made it happen.

– I slept in while my husband got up and made breakfast for the kiddos.  What a treat.  I have a six month old baby, and I actually feel rested!

– “The List” was actually accomplished!  We worked well together and focused on priorities.  It was an incredible feeling to see that it all got done.

I can’t believe it all went THAT WELL.  I am so blessed.  I just had to share it.  I have been having so much fun that I haven’t worked on research or writing.  I have a few things I am working on and hope to be back at it early next week.

Candy Land

Today was a pretty quiet day at home.  Spring Break reigns for another seven days and our big trips are out of the way.  Laundry and play took over the house.

There was a moment when we were just sitting around, each of us in our own world, when Aiden pulled the Candy Land game out of the closet.  He’s three and a half now, and a veteran of one successful round.

“I want to play the Candy game.”  He said, and repeated, “I want to play the Candy game.”

“Okay, I’ll play with you.”  I’m so thankful that there is nothing more pressing, nothing else I have to do.

And we play.  A sweet game, where he totally understands the rules, and is thrilled just to move his little gingerbread man across the bright squares.

“I’m winning!” He exclaims at one point.

“Yes, you are!”  I can’t help but cheer for him.

And then, from nearby, but deep in Lego building, I hear Jake, “It’s fun to play even when you aren’t winning.”

I breathe deeply.  Smile with all of my soul.  “Yes, it is.  I’m having a lot of fun.”

My husband, also nearby, but also deep in his own pursuits, looks up, “Where did you learn that, Jake?”

“From Mrs. Bell.”  His new therapist.  Well.  This is wonderful.  Thank you Mrs. Bell.  And thank you God, for this beautiful, sweet, fun moment with both of my boys.

Empathy round 1

When we were working through the diagnosis process for Jake, there were many, many questionnaires.  I understand that they are useful and important, that they are a quickly assessed way to gather a great deal of quantitative information about situations that are often emotional and complicated.

But, Heaven help me, they are so hard.  Facing page after page of rating your child, your family, your life, your reality is excruciating.

One of the things the questionnaires attempt to tease out is the question of empathy.

Empathy.  Only one of the most complicated of human experiences.

Empathy.  The ability to put oneself in the shoes of another, to imagine an experience from someone else’s point of view.

How on earth do you find out if a child, a child under age five, experiences empathy?  How can they tell you?  They cannot.  Add on to that social problems, sensory issues, and a completely misunderstood brain function.  Now try to find out if that child experiences empathy.  Right.

I know amazing teachers who work on developing empathy.  I know wonderful parents who try to model empathy.  I know of programs where empathy is supposedly taught directly.

I know that Jake struggles with empathy.  I just don’t know why.

He has always shown little concern for other children when they are hurt.  However, this is our observation at home, where the ‘other children’ have been his brother or his cousins.  They pick on each other.  They are kids, boys.  They push each other, wrestle, steal each other’s toys.  Inevitably, someone ends up hurt and crying.  Jake usually responds by walking quietly away from the crier.  We have asked him, oh, so many times, “Look at Aiden!  Does he look happy?  Does he look hurt?”

We didn’t know.  We didn’t know that processing facial and emotional cues was hard for Jake.

Does that mean he isn’t empathetic?

Now that he is a little older, all kinds of interesting things are happening.  He has expressed great concern about making sure that all of the kids in the class have the right supplies.  He has been anxious because some of the girls in his class haven’t had the chance to be first in line after lunch.  Anxious!

This week, we have all been sick.  My husband was sniffling as he played Lego with Jake on Saturday.  Jake asked him if he was hurt.  No.  Sniffling continued.  Jake again asked him if he was alright.  Dad finally clued in: Jake thought he was crying!  So they talked about Dad being sick and Jake was relieved.  Lego continued.

That all sounds a great deal like empathy to me.

So I did like I do, and went researching.  I found this:

What I saw in these [autistic] students instead was hypersensitivity – painful hypersensitivity that caused them to be persistently confused and disoriented about their surroundings and the people around them. It wasn’t that they didn’t care or weren’t empathic; not at all. It was that life was too loud and too intense, full of static and confusion (this idea would soon be called the Intense World theory of autism, see Markram, Rinaldi, & Markram, 2007).

http://karlamclaren.com/autism-empathy-and-the-mind-blindness-of-everyday-people/

I’ve written about the Intense World theory here.  You should read that too.  It’s all so amazing.  And this finally makes more sense.  I read what some other autistics said about their feelings related to empathy.

“If anything, I struggle with having too much empathy” one person commented. “If someone else is upset, I am upset. There were times during school when other people were misbehaving, and if the teacher scolded them, I felt like they were scolding me.”

Said another,

“I am clueless when it comes to reading subtle cues, but I am *very* empathic. I can walk into a room and feel what everyone is feeling, and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”

http://www.thedailybeast.com/articles/2009/05/11/a-radical-new-autism-theory.html

I have always known that Jake is more of an observer than many other kids.  He will watch a group of kids play rather than joining in.  He notices everything!  All kinds of details.  Why would we assume then that he doesn’t notice how others are feeling?

Maybe he doesn’t understand their faces.  Maybe he notices the sounds they make, like sniffling.  Maybe he notices where they stand in line.  Maybe he notices if they do not have an eraser, but everyone else does.  And if he can understand how that would feel, is that not empathy?  It just isn’t the way I learned empathy.  But I am learning.

And oh!  If it’s loud, and messy, and someone is hurt, and yelling and crying and upset, what if that is simply too much to bear, to relate to, to comprehend and know what to do?  What if when your little brother cries, you don’t know what to do?  So you walk away, a few steps, quietly.  You play with that toy that you stole, the one that made him cry.  Maybe it just takes longer to figure it all out.  Maybe you need to be able to listen?  To hear what’s going on without all the red faces and tears getting in the way?  I don’t know.  I just wonder.

Jake consistently prays for people who are sick.  He asks us about our day, what our favourite part of the day was.  He asks us what’s wrong when we are sniffling.

I say he’s got plenty of empathy.

Some days I just don’t have it

Some days I just don’t have it.  The patience.  The understanding.  The hope.  The optimism.

Some days, like today, I just barely survive.

It is the fourth day he has stayed home from school.  And gosh, I love that kid.  But that is a lot of time for the two of us to spend together.

He is feeling better.  I am sympathetic when he’s ill.  I really am.

But he is feeling better.  I am not doing well, however.

He keeps crying.  Over every little thing.  He keeps hitting and scratching me.  Every time I say something that makes him mad.  Which, it seems, is all the time.

I am so tired of it.

I am trying to teach Aiden it’s not okay to hit.

I am trying not to hit him myself.

I can do it.  But there are costs.  Like my mental state.  I am a mess.  I am angry.  Frustrated.  Furious.  Sad.  Empty.  I want to yell and scream and break things.  I have been doing that.  I have been crying and praying prayers of desperation.  Good God, help me!  I am the adult here.  How on earth did this happen?

Again and again I am so thankful for his Dad.  For his Oma.  For my Jesus.  I don’t know what would happen if I didn’t have them.  Instead of yelling at him any more I am here, writing this.  A better idea.

I can hear the patience in his dad’s voice.  I can hear it running thin.  I am not alone.  It will hold up.  We will hold up.

Pancakes and dancing

Tonight we were finishing up our chocolate chip pancakes for dinner.  My dear husband put some music on and I cleared up the dishes.  Jake started dancing/ricocheting across the room like a pinball.

He spun and he banged into things.

“I love you.” He sang.

“Who?” Dad asked.

“All of you.  We are the best.”

Yes.  We are the best.  And I love you too.

Eye Contact

Jake is sick.  With a fever.  He is whiny, sad, tired, and sick.  Of course, he wants his Mom.  I am spending more time than usual snuggling, calming, soothing, holding, whispering, and reassuring.  And for once, I am appreciating it more.  We are getting closer than we usually do, he and I.  I am being more patient, and he is asking for me more.

This afternoon he asked me to lie on the couch with him and snuggle in close.  Our faces were so close.  I counted his new freckles.  I stroked his unruly hair.  I whispered to him that I love him.  And I looked into his eyes.

He has the most amazing eyes.  They are brownish greenish with flecks of gold that seem like they are constantly rippling like a pebble in a lake.  I gazed into them and was lost, lost in love and emotion.  Truly, I could see how deeply he loves me, how intensely he needs me.

What makes a moment like this so special is its rarity.  Jake’s autism results in eye contact being difficult for him.  He actually looks into my eyes quite often, but only for brief glances.  He looks into his Dad’s eyes, and into a few special extended family members’, but that is about it.  At school, lack of eye contact is something I hear about a lot.

This isn’t usual.  The Indiana Resource Centre for Autism describes how feeling comfortable and confident in a situation increases many individuals with autism’s ability to make eye contact.  In situations where there are too many stimuli or there is anxiety, it is much harder to make eye contact.  I have also heard that the connection between people when they make eye contact is too intimate for many people with autism.  It feels uncomfortable, like being naked or exposed.  In a moment like the one I had with Jake, it certainly felt intimate to me.  We were connected and I felt deeply in love with my baby.

There is a big push to teach autistic people to make eye contact.  This is because our eyes convey so much of our social language.  People communicate with their eyes, and if you are missing that, you are missing out on a large part of a conversation.  There is also the idea that we give eye contact to people when we are listening or paying attention to them.  Therefore at school, teachers look out to make sure the students are looking back when instructing.  It is this eye contact that lets the teacher know that the students are paying attention and learning the lesson.  This is where the phrase, “Look at me,” is heard the most.  Parents and caregivers also do this a lot.  I know we do it here.  It’s the root of the “whole body listening” concept.  If you are listening and paying attention, you are turned to face the speaker, you are not distracted by other things, and you are looking at them.

However, the question is, is making eye contact necessary for paying attention?

What if it is too intense?

What if it simply doesn’t work for a person?

A number of “higher functioning” folks who have autism have described difficulties with making eye contact. One of the more humorous explanations was shared over lunch with a brilliant, well- educated, 45-year-old man who has Asperger’s Syndrome. With a mixture of cynicism, good humor and pleading for understanding, he discussed his difficulty with making eye contact, but even more to the point, with expectations that he “read” and respond to the subtle socioemotional messages conveyed via the eyes. In summarizing his message, he said, “If you insist that I make eye contact with you, when I’m finished I’ll be able to tell you how many millimeters your pupils changed while I looked into your eyes.

http://www.iidc.indiana.edu/?pageId=472#sthash.bczHRBhN.dpuf

I love this story.  It is absolutely what I imagine Jake goes through.  I am coming around to the idea that I do not actually want to pressure Jake to make eye contact if it is uncomfortable, too intimate, and does not actually accomplish any additional communication with him.  The Daily Beast wrote:

To a neurodiversity proponent, autism is a social problem. That is not to say that autism is fundamentally a problem with social skills; rather, it is a problem with society’s lack of tolerance for the range of thought patterns and behaviors that characterizes autism. A neurodiversity advocate might say, for example, that autistic people should not be forced to learn how to bring themselves to make eye contact… The rest of us could learn to understand that lack of eye contact is not necessarily rude or weird but is part of the range of acceptable behavior. More than that: We could value the unique insights the autistic mind has to offer.

http://www.thedailybeast.com/articles/2015/02/25/they-don-t-want-an-autism-cure.html?via=desktop&source=facebook

Wow.  This is where I am coming to.  I want to find an alternate route to communicate with Jake, for those times when he can’t look into my eyes, or into his teachers.  There needs to be another way for him to show that he is listening, perhaps by turning his body, or offering a simple “Got it.”

As well, I want to help create a world where eye contact is appreciated, and yet, not required for social interaction.  I want Jake to be able to have friendships with his peers and work with his teachers and have them understand that he just can’t offer that all the time.  I think this is so important, and so easily done.  I would hate to have people demand that I feel exposed all the time.  All it takes is some education and understanding.

Getting into trouble

Sometimes I would love just a peek of insight into Jake’s mind.  Sometimes I get it.  Oh, it’s wild to me.  This was a conversation we had the other day.

Me: Jake, you told your teacher you aren’t sleeping well. Are you not sleeping well?

Jake: Nope

Me: Why not?

Jake: Aiden talks too much.

He does, but that’s never been a problem before.

Me: Do you have worries?

Jake: Yes, I just have to pray that the Lego doesn’t go down the tub drain.  Because that would be sad.

Me: Ah.  But you know God will look after the Lego.  Just pray for it once and He will remember.  You don’t need to worry about it.

Jake: And I pray for Auntie Kate.  I pray the same thing over and over.  Just for Auntie Kate.  That she won’t meet a bad guy.

Me: But you know Auntie Kate is okay, right?

Jake: Yes, but Auntie Kate is Luke Skywalker and she is getting into trouble.

Oh.  Well, there I go.  Insight.