The World is Too Intense

I have found a few sources that discuss how the sensory disorders that are so often associated with autism are inseparable from the biology in the brain and the diversity of autistics.  Then I found this website and it describes a theory of autism that explains both the sensory disorders, and the diversity, so nicely.  It makes total sense to me, and I find it remarkable.

The Intense World Theory states that autism is the consequence of a supercharged brain that makes the world painfully intense and that the symptoms are largely because autistics are forced to develop strategies to actively avoid the intensity and pain. Autistics see, hear, feel, think, and remember too much, too deep, and process information too completely. The theory predicts that the autistic child is retreating into a controllable and predictable bubble to protect themselves from the intensity and pain.… It is a unifying theory because it takes into account and explains the many different results and interpretations from a spectrum of studies on autism.

http://wrongplanet.net/interview-henry-and-kamila-markram-about-the-intense-world-theory-for-autism/

What this quotation describes is exactly what I have noticed in Jake.  He reacts when he is overstimulated.  I can see how different people would find different ways to cope, and this would account for all of the different kinds of autism we see.

I read about how many autistic people can’t see the forest for the trees.  They are often so focused on details that they can’t see the big picture.  Often this can be quite literal, as in not being able to cope in a group of people because they are processing each individual person and thing in the room so completely.

Today, Jake couldn’t go to school.  He was just an emotional, overloaded, sobbing mess.  I have no idea what was wrong.  There was no fever, no runny nose, nothing obvious.  I eventually gave him some ibuprofen hoping that if something was hurting him, it would ease.  And ease it did.  The change was dramatic.

One minute he was gripping me and screaming that he wanted to go to the library RIGHT NOW to get a Lego Star Wars book, and the next he was calmly showing Penny his collection of cars.  It was about 20 minutes after the medicine was given.  Something was really bothering him.  I may never know what.  I hope that as he gets older he will be able to tell me so I can help him.  It could be anything-a smell, lights, sounds, a headache?  I can only speculate.  Kids with autism often find the smell of cleaning solutions to be too much to handle.  I have noticed that Jake has torn off his socks his whole life.  I think that the elastic tightness on his feet bothers him.  I ran through what he ate the night before, wondering if there was something different or particularly agitating.  I came up with nothing.

He was reacting to a pain, though, and it was coming out in tears, punches, pinches, and yelling, this morning.  I guess I am becoming more understanding.

I did have to leave the room once, to calm myself and remind myself that this is what was going on.  It isn’t easy to stay in the moment and keep my knowledge in front of my emotions.  I sure wanted to yell at him, give him a time-out, and send his weeping butt to school so I wouldn’t have to deal with it.  I’m glad I didn’t though.

We ended up having a great day.  He stayed home all day.  We played Lego.  We watched TV, we played on the iPod.  I made a lunch I knew he’d like, and sure enough he ate joyfully.  By the time my husband came home from work the house was calm and happy, and I actually went out for coffee with a friend.  I came home to find the three kids all playing peacefully and dinner was started.  I may never know what it was this morning.

Overall, knowing that the world is sometimes just too much to bear is very helpful for me.  It gives perspective and understanding.  From there I can try to find appropriate consequences for the violence and work on being patient with the tears.

Dear Mom of a sick baby

A detour from my own reflections, one of my dearest friends is caring for her first and he is sick.  It brought back so many memories for me and inspired this post.

Dear Mom of a sick baby.

It’s his first cold.  You are exhausted.  I know.  I know you are up all night just after you finally thought maybe you would start to sleep better and feel better.  You thought you knew the meaning of tired.  You thought you knew the meaning of laundry.  And now he’s sick.

It’s okay.

You are doing a great job.

You are the best mom in the world.

Because when he cries, you are there.  When he tries to nurse but can’t breathe and pulls off and hurts you and then cries again because he’s hungry, you are there.  You are loving, you are warm, you are safe.

You are teaching that sweet baby that you will always be there.  That you will always calm him down.  That you will always hold him when he’s scared.  That no matter what the mess looks like or smells like, you will clean him up.  That you are his safe place.

And when he grows, and he gets hurt, he will call for you.  When he is teased, he will know you are safe.  When he gets scared from a nightmare, he will know you are there and everything will be alright.  You are teaching him love.

You are amazing.

I know there are washcloths and tissues and you don’t know which are yours and which are his, which are from sneezing and which are from the moment you lost your cool and just sat and sobbed with exhaustion.

I know your back hurts and your arms hurt and your legs hurt and your feet hurt because you have to carry him all day.  Don’t put him down, or he will cry and be scared again.  I know he won’t go to anyone else.  I know he only slept for one 15 minute nap and is overtired.

You thought your house was messy but tomorrow you would tidy.  You thought you could get the garbage out in the morning.  But now you are holding a sick baby and there is nothing you can do.  Nothing you can accomplish.  Nothing but hold him.  Clean him, feed him, rock him, and pray.

I know you are incredible.  You are his mom.  You want to call your mom and cry and beg her to come and rescue you because you think you can’t do this.  That’s because that is what moms do.  You are doing it.  You are inspiring me.

It’s okay.

Change that thinking

A huge part of why I wanted to start writing about our adventures with autism and what I am learning about it is to fight misconceptions and the negative image autism has held for me.   I am so bothered by what I read when I first started researching and trying to learn.

I didn’t start out with misconceptions.  The autistic kids I know are wonderful.  They are intelligent, well-rounded individuals whose personalities are as diverse as their symptoms.  But after Jake received his diagnosis, I went looking for more information.  I wanted to learn more than kids with autism are great and different from each other.

What I first found, however, ended up increasing my stress rather than helping me at all.  The statistics on autism are alarming and seem to float above everything else.  The most recent data suggests that 1 in 68 children are receiving this diagnosis.  Other stats describe how autism is more common in males, is genetically linked, and siblings of children with autism are more likely to receive a diagnosis also.  Alarming!  As well, there is a suggestion that in families with an autistic child there is more stress on the marriage and I read somewhere that 80% of marriages with autistic children end in divorce.  Super.

Okay, so as I looked deeper, everything just looked darker.  The internet is full of stories that are sad, stressful, tragic and troubling.  Autistic kids wander.  They drown.  They can’t tell their parents anything, let alone that they love them.  Yikes.  That is not my kid.  Well, he might wander a little.  And we are struggling to teach him to swim.

The point, however, is that I was reading the wrong information.  I needed to read about families who were more like mine.  Families where it is hard but so good.  Families where they are making it all work and it’s all alright, even when it’s not.  So I went searching.  And I found this blog:

https://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

It’s a letter that this mom wrote to the head of Autism Speaks explaining how she feels about what she calls the “rhetoric that demonizes and dehumanizes our loved ones, telling them they are a tragedy, a burden.”  It spoke and continues to speak volumes to me.  This mom is amazing.  She took all of my panic and doubt and fear and spun it around.  I threw it away because she wrote truth and I understood it.

She recounts her phone conversation with then-President of Autism Speaks Mark Roithmayr,

Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us. “And what of older children and adults?” I asked Mark at the time. At six, I knew that my daughter wouldn’t see that video, but what about those who were old enough to watch it? What about Autistic teens who were so damned vulnerable — to bullying, to depression, to suicide. What about them? Did anyone think of what it would feel like to hear that if you haven’t already, you will destroy your parents’ marriage, bankrupt your family, make it impossible for your parents and siblings to do anything at all without pain and embarrassment? How would it feel to an already-struggling kid to hear that THEY are the cause of desperation, loneliness and fear?

Wow.  This is so amazing and so true.

I never want Jake to feel like he is a negative.  I never want him to feel like what makes him unique makes him less.  I never want him to feel like what he struggles with is something that causes us pain or embarrassment.  I guess that means I will refuse to be embarrassed.  From this moment I am choosing to think of autism as a blessing, because it is a part of Jake, and Jake is a blessing.  End of story.  I will do my best to figure out how to help him, how to understand him, and help him cope with his challenges.  But I will not think of it any other way.  I believe that my words and attitudes really have power, and really will shape my kids.  They will be valued, loved, appreciated, and that is that.

One of those days

Wow.  What a day.  It was one of those days.  The really amazing ones with so many twists and turns that by the end of the day you look back and wonder, did all of that really happen in one day?

We met with Jake’s teacher, special education teacher and educational assistants today.  He is immersed in a regular kindergarten class, and let me tell you, these ladies are amazing.  There are 17 kids in the class, and I have heard that there are at least 5 “high needs” students.  That’s parent talk for “we don’t know what their issues are, but we are pretty sure they have some.”  That is amazing.  These ladies are so wonderful.  They spoke to us about goals and struggles that Jake is having at school.  Even more than that, though, they spoke to us about how far he has come since September.

“He doesn’t just put down his head and barrel into the other students anymore.”

“He eats his lunch.”

“He doesn’t push me to get attention.”

“He talks to me about what he is worried about.”

It was like getting a wonderful massage and sipping on a glass of wine on a summer night.  That good.  One of them described how they sometimes take Jake out of the class to make some big, strong, directed movements to shake him up and get him ready to work with the class again.  One of them talked about how she sits with him while he works, and it’s hard for him to wait for his classmates to understand the material.  So she tells him to work through it, checks that it’s right, then sends him to play quietly.  These women are my heroes.

It wasn’t all perfect reports; he is struggling with anxiety, social skills, and has some behaviour outbursts that are not okay.  What I really loved, though, was how they looked at him and understood who he really is.  A whole, beautiful, special little boy.  I could see love in their words and their faces.

I came home to babysit for a dear, dear friend and received a phone call.  Then Jake, this special little boy, was having a hard day and he hit another student.  His teacher sounded apologetic, and said she just wanted him to be successful and if he was having such a hard day maybe he should go home.  As I was babysitting, I could not go get him.  And so there was texting and his dear auntie did the pick up.  Now I have my three and another.  The afternoon was ok… but Jake had an outburst when the littler kids broke up his lego.  He upset our visitor so much that he was sobbing for about 15 minutes and only wanted to go home.  Yikes.  Then Dad came home and the behaviour interventionist came for her first real session.  Jake loves her.  But so far they have only played and had fun together.

Today was more work for him.  I checked on them once, overcome with curiosity.  He was doing great.  And he was learning how to listen to people with his whole body, so he isn’t playing around or getting distracted.  That was all good.

We had tacos.  We do that on Tuesday.  It went smoothly.  Penny is eating rice cereal like a starving kid.  She loved it.  And then I ran back to the school to talk to potential Kindergarten parents about why they should pick us over the free public system.  Whew.

Apparently while I was out Penny screamed.  The boys ran in and out of her room while her Dad tried to get her to sleep.  Then they were trouble and wouldn’t get ready, wouldn’t get in bed, wouldn’t stay in bed.  Poor Dad.  It was one of those days.

The result of a day like this is a big mess and no energy to clean it up.  I am going to sleep peacefully, however, just thinking of my kiddo.  In that class full of needs, thriving, growing, learning.  What blessings we have.

What it’s not

My kids are great.  They are really wonderful.  But I have noticed that they are more wonderful when they are not at home.  When they are at a friend’s house, at school, or at their grandparents’ house, they are more wonderful.  There are many causes of this, all of them quite understandable.  They are on their best behaviour.  They are having a great time so there is less to lose their cool over.  They are getting plenty of attention.  They are being challenged and so they are not bored and looking for ways to make things more interesting.  I get all of that.

And certainly, at times, I know they can be trouble for their teachers and grandparents too.

Overall, however, I also know that they let most of their trouble out at home.  For five years Jake has been having tantrums, meltdowns, violent reactions, and stressing out the home environment.  Aiden has now joined in, provoking Jake, having his own tantrums, screaming and yelling when he doesn’t get his way.  Some days there are a lot of tears and a lot of screaming.  Some days I join in.  Some days I don’t.

The autism diagnosis told me that I wasn’t crazy.  That what Jake was going through was not developmentally appropriate.  That it is not my parenting.  I am not a screw up nor have I ever screwed him up and created this.  How amazing is that?  I have doubted every decision I have ever made.  I have wondered about when he was an infant and when he was a toddler and what I have done wrong.  I haven’t done anything wrong.  I have done my best and it is good!

One of my most encouraging friends told me that she thought that if it wasn’t obvious to some people that Jake has autism, it is because of the love and parenting that he has been surrounded by.  What an incredible thing to say.  What an incredible gift.

Because I feel doubted.  I feel like if people are aware of Jake’s autism, they either don’t believe it or they think I am making something out of nothing.  I feel like they are doubting the diagnosis, that they are doubting me and my parenting decisions, that somehow they look at him, having a minor tantrum, yelling and swinging his arms for example, and they would think I am clearly not doing something right.   As though maybe if I were gentler, he wouldn’t be violent.  Or maybe if I were not so strict, he would be happier.  Or maybe if I just gave him what he wanted there wouldn’t be an issue at all.  All of these things feel like judgments that I am fighting all the time.

The truth is, Jake has autism.  He gets overwhelmed.  Small things bother him greatly and he seems to overreact all the time.  We have no violence in our home.  None.  No guns.  No blasters.  No swords.  No killing.  No blood.  Have never.  We have been so careful what we expose our kids to.  But he is overwhelmed by this world and its sounds and rules.  He is coping as best he can.  He is happy.  But he is learning how to survive and thrive in a world that has values which are not intuitive to him.  It’s hard.  Clear rules and expectations help him.  And there will always be issues.  Always.  Because that is what you get when you have someone who is different.  Issues come from friction.  The friction will lessen as we learn how to help him.  And as he learns to adapt.  But that will take him a long time.

All of this is encouraging to me.  It is freeing and empowering.  I know it is real.  I was so careful not to skew the results of his diagnosis and I prayed over it obsessively.  God has led us here and it is real.  So I will learn to endure the doubts and judgment that people inevitably will have once they know.  And I guess I will try to educate them about autism.  That’s kind of the whole point behind this writing too.

February 2015 105

It’s not all kids who are non-vocal.  It’s not having a really low IQ.  It’s not imagined or ADD or ADHD or just badly behaved kids.  It’s really not.  It’s not because of vaccines.   It’s not moms who don’t care.  I care.

And my kid, who appears at times to be nothing more than a little quirky, is doing so well in spite of his brain which is wired differently.  Is doing so well in spite of his overload of sensory information that makes him scream sometimes.  Is doing so well despite anxiety over people doing things that don’t make any sense to him.

I’m pretty proud of him.

A Complicated Calling

I feel inclined to write.  It’s hard for me, and the reasons are layered.  However, I have been so inspired by reading the voices of others like me.  Moms and Dads who are on journeys like mine, who have been where I’m going, and who penned words that lift me up.

I didn’t want to tell anyone about Jake’s autism.  I didn’t want anyone who didn’t know him well, personally, to know that first.  Because he’s a person first.  He’s complicated.  Autism isn’t how I know him.  Or at least, it wasn’t.  I knew him only as my baby.  Only he isn’t.  He’s grown up so fast and so much.  Being five and going to kindergarten is not only not a baby anymore, it’s the best thing in the world.

You see, it’s complicated.

More and more, however, I am learning to know him better, and I am learning that he is autistic, and that is a huge part of him.  Whether it is labelled or not, it is how I know him, how I treat him, and how others interpret him.  I am also learning about autism education.  Not his education as an autistic student, but my education about autism.  I am learning so much.  And I feel quite convicted to share some of this with you.  It’s a kind of autism awareness, I guess, only those terms are confusing and bothersome to me.

Even that is complicated.

It turns out a lot about autism is complicated.  The individuals themselves, the community surrounding them, the treatments, the diagnosis process, the causes.  I have learned so much already.  And my curiosity is piqued.  My brain is wired for curiosity.  I love science.  I love discovery.  I love learning.  This is what I am called to, this is my gift.  One of my gifts.  It turns out I have many.  Other gifts God has showered upon me include my incredible children, Jake, Aiden, and Penny.  I am called to use my gifts.

I have heard God’s call clearly on my life twice.  The first time He called me to teach at a local Christian school.  I decided I would teach there, become a teacher/mom until I had a calling to do something else.  This was inspired by a story a friend told me about Mother Teresa.

Someone interviewing Mother Teresa asked her about hearing God.  She answered that she had heard God only once, clearly, in her life.  He called her to work with the desolate in India.  So she did.  And continued to, whether she heard Him clearly like that again or not.  And as it turned out, she did not hear Him again like that, ever.  She said that she would continue to do what He called her to do until He called her to do something else.

What a beautiful story.  And now I have heard a new calling.  Autism Mama.  So here I go.