Yellow, and White, and Brown, Oh My.

Jake told me that he couldn’t eat peanut butter anymore.

He said that it is the wrong colour.

That it gives him nightmares and he can’t sleep at night.

That it is too light of a brown.

And I said, okay then.  I made him another lunch.

Now the question is, am I crazy?

Well, yes.  That is the name of this blog after all. But also, no.

My husband struggles with food of certain colours.  He has, for as long as he can remember.  I have teased him about this, tried to get him to try new things, and accepted it.  He doesn’t like yellow.  Or white sauces.  Seriously.  I am not the only one who has given him a hard time about this.

And now Jake?  Light brown?

I have recently read a novel titled, The Curious Incident of the Dog in the Night-time by Mark Haddon.  It is a great read, I highly recommend it.  The main character is a teenager with autism.  He also has colour issues.  He watches the cars on the way to school in the morning.  If there are red cars, it is a good day.  If there are yellow cars or brown cars, it is a bad day.

Yellow and brown again.

What a strange way to decide if you are having a good day or bad day, I thought.

So I talked to my husband about his colour issues.  It was incredible.  We talked about colours for hours.  I really listened.  My husband has no diagnosis, but imagines that today if he were a child in school, he probably would.  Autism wasn’t the same thing when he was a child.

Back to the colours.

He remembers trying to sleep, closing his eyes, and seeing flashes of
colour.  If there was predominantly yellow and white, he couldn’t
sleep well.  Yellow, in particular, brought out the emotion–he even
created a name for the particular shade that he saw: “danger yellow.”
When he saw these colours, he had trouble relaxing, had trouble
falling asleep, and had nightmares.  He understood, as a young child,
that seeing yellow and white meant a bad night.

This is something!  This is amazing!

This is something I have control over! I can make lunches that are the right colours!  I can do that!  I can appreciate and understand that although I may be crazy, I may think that it’s crazy, it is real and really makes a difference for Jake.

Research online has not helped me much.  I did find this, from an interior design blog, however it does not cite the source of the research.

Researchers have found that autistic children’s rods and cones (components of the eye) have changed due to chemical imbalances or neural deficiencies. Colors appear more vibrant to autistic children. Of the autistic children tested, 85% saw colors with greater intensity than non-autistic children. The color red for example, looks fluorescent and vibrates with intensity.

http://colorspecialist-charlotte.blogspot.ca/2011/04/color-autism-guest-blogger-denise.html

I have looked online to see if there are other autistics describing similar colour aversions.  There isn’t much.  There are many descriptions of people who see words, numbers, or feelings in colour.  The book Born on a Blue Day by Daniel Tammet describes this phenomenon well.  He is an autistic savant who remembers dates and numbers because he can see their colours.  This is called synesthia and is a legitimate neurological phenomenon that is being studied.  I don’t think this is what my husband and Jake are experiencing, but I don’t know.

Wikipedia defines synesthia as “a neurological phenomenon in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway.” http://en.wikipedia.org/wiki/Synesthesia  So, a crossing of neurons, where one sense, like seeing a colour, triggers the experience of another, like pain, or joy.

I have found a few people who describe disliking yellow or white, or tan (a light brown? Huh.)  So my husband and Jake aren’t alone in this.  However, others describe that the colours taste bad, make them nauseous, or are associated with negative things for them.  I have also looked up sleep disorders and tried to find connections to colours.

There is a considerable amount of research that shows that using a colour screen or colour tinted glasses can dramatically help autistic people process the things they see.  Literally, seeing the world through rose-coloured glasses, or blue, green, or orange.  I am going to look into this further for Jake, sometime.

Yes, I have more research to do.  I will be looking for more information about this colour thing for years to come, I am sure.  But right now, I am thrilled that I know enough to go along with it.  I know enough not to tease him, to pressure him, or to force him to eat that peanut butter sandwich.  We are growing, my boy and I.

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A birthday party

We went to a birthday party this weekend. It was so fun. Seriously fun. Not because it was at the gymnastics club where kids had too many choices and ran until they were spent. It wasn’t. Not because every kid from the kindergarten class was there competing for the birthday girls’ attention and fighting over the toys. They weren’t there. Not because there were tons of sweets and treats. There weren’t.

It was seriously fun because it was simple. And relaxed. There was a grand total of eight kids there, including Penny who is now 7 months old and all of the siblings. All of the parents stayed and visited and had nowhere else to go. There were no noisy games and all of the kids were happy. They knew each other. They knew where the bathroom was.

I love these people. What was amazing was that I was there with my family, and we are the only ones there with a diagnosed special need, but the hostess kept raving about how happy she was that it was so relaxed and comfortable for her kids.  My Jake was the only autistic child there, but one of the other moms was thankful afterwards that we were all so accommodating of her family’s need to arrive late. Seriously. How blessed am I. Aiden and Jake played with each other, with the other kids, the little girls played with Penny. The kids were all having so much fun that they didn’t eat much dinner. And when the cake came out, it was gluten free, not so that my family could participate, but because the hostess is also wheat free,

How amazing. This is what makes my heart full. Such normal, casual, comfortable friendship and acceptance.

Get the Word right

I have been doing a lot of thinking and processing.  It is so hard, way more emotional than I thought it would be, this knowledge I am gaining about my boy.  I seriously thought, I’m a teacher.  My husband is a teacher.  We have seen beautiful, intelligent autistic children thrive and succeed.  Having one of our own is no big deal.  I was so proud of how I handled it.  I thought I had my self under control.  But it is harder to deal with than I thought it would be. I wrote about how autism is not a disease here. I have written about how I feel about autism here and here. I really believe that is it not a negative, not an illness to be cured, but a positive.

At the same time, I was also scared when Jake was diagnosed. I didn’t know what to think, to feel. I felt conflicted, negative about this word, this autism. But as I come to accept it, know it, believe it, and believe in Jake, I have come to see it as a good thing. However, I feel like I need to spread this idea. There are so many families facing this diagnosis. There are so many kids struggling to find their way with autism. There are so many teachers, classmates, siblings and grandparents affected. All of these people need to see autism as a good thing if autistics are going to find acceptance.

So I am going to use that word. Autistic.  It’s a reversal of what I have been trained to use. As a teacher, I’ve been taught to use person first language. Person first language is important and respectful. It says, “your disability is not your identity.”  For example, rather than saying to a special education teacher, “I have a physical disability, a epileptic, and an ADHD kid in my class,” I would say, “I have a student with epilepsy, a student with a physical disability, and a student with ADHD.”  This small change suggests that it is the students who are important, not their diagnosis.  This is such an important thing, and I truly believe in it, especially in contexts such as at school.  I always want to know my students as people, not as labels.


However, when it comes to autism, I feel differently.  Autism is not simply a disability.  Words are powerful.  I don’t want Jake to feel like he carries a burden, a negative, or a label.  I want him to feel like who he is is just perfect.

 These linguistic distinctions might seem trivial, but our language plays a key role in shaping our thoughts, our perceptions, our cultures, and our realities. In the long run, the sort of language that’s used to talk about Autistics has enormous influence on how society treats us, and on the messages we internalize about ourselves.

http://neurocosmopolitanism.com/throw-away-the-masters-tools-liberating-ourselves-from-the-pathology-paradigm/

Autistic writer Jim Sinclair explains,

Saying “person with autism” suggests that the autism can be separated from the person.  But this is not the case.  I can be separated from things that are not part of me, and I am still be the same person.  I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me.  But autism is part of me.  Autism is hard-wired into the ways my brain works.  I am autistic because I cannot be separated from how my brain works.

http://www.cafemom.com/journals/read/436505/

So, when discussing a serious negative, I will say, someone has Crohn’s and Colitis, or someone has Cancer.  I will not say such a person IS Crohn’s and Colitic or Cancerous.  That would be ridiculous and insulting.  Yet, when discussing attributes that contribute to someone’s personality or identity, I will say someone is Christian, or someone is tall.  I would not say that they are a person with Christian beliefs, or that they have a strong height.  That would be equally ridiculous.  The difference is meaningful.  Therefore, I will say that Jake is Autistic, not that Jake is a person with autism.  He is Autistic, it is a part of his personality and identity that is neither his choice, like being tall, nor a negative, like having a disease.

Lydia Brown, another autistic advocate wrote,

 When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

http://autisticadvocacy.org/identity-first-language/

This is why it is important to me to get it right.  We are talking about autism at home.  I have books with autism in the title all over the house.  Jake is brilliant and learning to read.  He is going to ask me, he is going to see them, and I am going to be ready for him.  Autistic here, means something beautiful.

There is a key difference here for me, between saying someone is a person with Down’s Syndrome, for example, and a person with Autism.  The difference is in how the culture, the kids, the teachers, and the community mean it.  Years ago, it was common to use the word ‘retarded,’ which is hurtful, judgmental, and insulting.  Now, we carefully avoid this negative word, preferring to appreciate individuals, including individuals with Down’s Syndrome.  However, Autistic has become the new insult.  It is viewed as a negative, as an insult, and as something to be avoided.  I have heard it being used in schools and by public figures as a very negative thing.  Unfortunately, saying person with autism doesn’t help in this situation.  It is the same root word and association.  When I say that Jake is Autistic, I am saying that being Autistic is not an insult.  I am taking ownership of that word, that trait, and the right to decide the connotations it brings.

Jess, at Diary of a Mom talks about how she envisions her autistic daughter,

When someone spits ‘autism’ at her as a dirty word, I want her to turn it back on them, framed as her own. “Yes, I’m autistic. So? I’m damned proud of it.’” Heck, she could even throw in, ‘I’m sorry that you’re not, but that’s not my problem,” for good measure. And so too, she can use it to connect with others like herself, to be a part of a community of understanding and support and pride. And thank God that community exists and awaits her – forged and fostered by adults – adults who, in my experience, choose to be called autistic.

https://adiaryofamom.wordpress.com/2012/07/07/person-first/

High-Functioning Autism

I don’t know how autism works.  How Jake can be so ‘high-functioning’ and someone else’s child can struggle just to talk.  I don’t know how the violence that explodes in our home at times rates compared to other families.  I don’t know how such a wide spectrum of symptoms and behaviours can all be related.  I know that I have told people, hesitantly, that Jake has been diagnosed with autism, and heard them respond, “Well, he is so high-functioning.”  Those words have brought me comfort, relief, and yet, always felt a little strange.

The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.

I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.

https://adiaryofamom.wordpress.com/2011/05/04/a-spectrum-of-words/

I know we are blessed.  And I know that even though we are blessed, that Jake is so verbal, that we are all functioning alright most of the time, he is autistic.  It is real.  He struggles with the society around him.  He struggles with the sensory input he receives.  I can foresee him struggling with writing essays or abstract concepts that are hazy and hard to define.

He is my first and highest priority.  I have to try to advocate for him the best way I can.  He is going to grow up in this world, and meet people who are very much like him, who have no such diagnosis.  He is going to meet people who speak using scripts, repeating familiar phrases that fit the situation.  He is going to meet people who are completely non-verbal.  And somehow he is going to try to fit himself into this situation.

I want to protect him from depression, from despair, from low-self esteem.  That is more important than teaching him his letters, how to ride a bike, anything else at all.  He needs to grow into himself, to know he is valuable, he is whole, in every way that truly matters, he is just like every other human.

It is comforting for me, for my parents, for those who deal with Jake often, to think of him as high-functioning.  However, I am already struggling with this.  There are days where we are not functioning very well at all, moments where I feel like everything slows right down and I am confronted with the reality of autism and the difficulties it presents.  Then, there is the judgment that the label brings, that somehow my child is doing better, will be more successful, than your child with severe autism.  And yet I have such high hopes for him!  I imagine he will meet someone, get married and have a family.  He most certainly will get a job and move out, living independently some day.  Yet, there are many parents who feel like these are impossible dreams for their autistic children.  How are we the same?  Do we need a way to explain where on the autism spectrum our children fall?

 Autism is one word, but there is no one autism.

Alas, for now that one word is all we have. So like it or not, we’re going to have to continue to figure out how to share this ill-fitting umbrella – this one name for all the myriad manifestations of this baffling disorder.

.

Some iterations desperately debilitating, some completely incapacitating, some mildly challenging, some no more than delightfully quirky – all with just one name.

.

We seek – no we demand! – tolerance, compassion, understanding. But how on God’s green earth can we expect those things from others when we cannot seem to show them to one another?

.

We’re in this together. And like it or not, that’s the only way we’re going to be able to move forward, get answers and make this world a better place for our children.

.

TOGETHER.

https://adiaryofamom.wordpress.com/2011/08/05/together/

I know as the days get smoother, that we are in a good place right now.  It is easy to forget, when Aiden and Jake spend not just moments but hours playing together, without major incident, that it was not always this way and it will not always be this way.  It is easy to forget, as I go through the ritual of bathtime or bedtime, how many things we have tried, how many tears have fallen, and how hard these now basic routines used to be.  Even school is going so well.  I have to remind myself that before kindergarten started, even with no diagnosis, I spent about two weeks on just preparing Jake for the days that were to come.

Now on top of all that, we have more support, more information, more experts to talk to, more resources and tricks to pull out.  We just received our package of therapy resources.  I could never have imagined how quickly Jake would take to his visual schedule.  That thing is super!  So yes, we are functioning well, right now.

And the thought of school picture day coming up reminds me to prepare Jake.  Knowing he still has not had a successful dental cleaning reminds me of how hard it can be.  When I plan or imagine vacations, how Jake will handle it all is an important consideration in deciding where to go and what to do.  Just having the three kids home for five days on my own while Jake was sick was a very in-my-face reminder of how challenging he can be.  My days with only Penny and Aiden seem so simple by comparison.

Well, I’d say that as with most things, we attack the problem from both sides. We work on changing the language that reinforces the bifurcated [split in two groups] model of autism (not using it is a great way to start) and at the same time we educate the general public on why support and accommodation are vital across (around?) the spectrum. Changing language is a process. It’s not a quick fix…

People who are severely impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.

People who may appear to be more mildly impacted by autism need and deserve our support. They face unfathomable challenges and misconceptions about who they are and what they can do every day.

https://adiaryofamom.wordpress.com/2012/08/06/pretty-pyramids/

The thing is, when we refer to someone as being high-functioning, we are saying that ‘other’ autistics aren’t as good.  That one person’s diagnosis is somehow more valid than another’s.  We are saying that autism is bad, and that thankfully, you don’t seem to be displaying very much of it.  This is why I feel strange and uncomfortable with the term, even when it has brought me comfort to have it applied to my son.  Because autism isn’t bad.  I define autism.  I define it as a neurological condition that brings struggles, requires compassion and support, and has nothing to do with the value of an individual.

I am going to stop using words to break autism’s vast spectrum into segments, I am going to stop using words that assign values where they have no place.

Not Alone

As April and Autism Awareness month roll on, I have really noticed that it is amazing how people can help each other.  I have been spending every minute that I have to myself online reading the thoughts, wisdom, and challenges of others around the world.  Autistics, parents, researchers, you name it.  It is truly incredible, inspiring, and thought-provoking.  I am growing, seriously growing, and my goal of becoming an amazing, educated, know-what-I’m-talking-about, autism mama is morphing into a passion.

It turns out there is a lot to learn! Ha!  I know!  Those of you out there who have gone before me are laughing.  I knew I didn’t know things.  I had no idea how much there is to learn.

I am incredibly thankful to these people, real people, out there, in the real world, sharing their revelations, thoughts, experiences, and ideas with me.  I don’t know them.  They are just giving, opening their lives and minds to the world, and oh!  It’s a community!  It’s people like me!  Like Jake!  Like our family!

I have found great inspiration in blogs from other moms.  I have read hours of stories of their struggles and victories, their hopes and their experiences.  Equally inspiring are the words of adults on the spectrum, who have shared their stories.  I have devoured books and combed blogs.  The words of the people who live with autism are awe inspiring.

What’s more, they are friendly.

There is a real, authentic community of people growing that is welcoming and kind.  It is hopeful and encouraging.  It uses words I need to wrap my head around and get used to, but I know now will become an easy part of my vocabulary in time.  Things like neurodivergency and stimming, autistic and proud.  The following was written by one such autistic, and it is resonating deeply with me.

“I’m not alone” doesn’t have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn’t alone, that there’s a whole community that will embrace him because he’s one of ours.

– You, Yes, You, Need Autistic Friends, Neurodivergent K 

I am going to be a part of this community.  Jake is going to be a part of it.  He will not be alone, he will not be a minority, and he will have a voice, and a place where he is among others like him.  Where he is not different.  Not special.  That is funny to me.  And wonderful.  There are many places where he will be special.  Where he cannot help but be noticed.  Where he is a minority.  But out there, in the internet, there are more of our people.

Thank you people.

Our authentic community surrounds us. I am adding our stories to the rest, sharing education with those I know personally and those who now read this out there online.  What an incredible thing.

Differences

I have been learning so much.  I have found so much hope and strength in learning.  Autism is not a disease.  It is not a sickness.  It is a difference in the way the brain develops at a very young, possibly pre-birth, age.  The pathways and connections in the brain don’t develop the same way in Autistics that they do in neurotypical people.  So I may have learned that when I make eye contact, it is a happy feeling and people smile and giggle.  Jake may have learned that a gentle pressure on his back is a happy and comfortable feeling.  Jake may have learned that too much noise is painful and that conversation moves too quickly, words can pile up like pancakes that have to be slowly taken apart to get down to the meaning.  I have learned that autism is not anxiety, it is not dietary problems or sleep problems.  Autism often results in behaviour that we don’t understand, in meltdowns, tears, or stimming behaviours (self-stimulating behaviours, such as excessive scratching or spinning objects).  However, these are also not a disease.  They are simply communication that we don’t understand.  A different language.

A difference in his brain.

A difference.

A different language?  A different understanding?  A different experience?

A disability?  Maybe.

A different ability.

Not a disease. Ok.  So then, is there a cure?  Is there a recovery?

Can there be a cure for something that is not an illness?  No.  No cure.

Can there be a recovery from how your mind works?

I have read amazing stories of non-verbal Autistics who learn to use communication devices, or even learn to speak.  I have read incredible stories of people who struggled socially and grew to hold careers and marriages and families.  I have read of Autistics who become great at eye-contact, who love sarcasm, jokes, and being with people.  Is this recovery?

Is it recovery if no one can tell that you are Autistic?

Is assimilation and becoming like everyone else the goal?

No.

The goal is Jake’s happiness.  The goal is lessening Jake’s anxiety.  The goal is helping Jake develop friendships that he values and that value him.  The goal is Jake feeling loved, accepted, fearfully and wonderfully made.  The goal is for Jake to be able to function in society at the best of his ability, enjoying his role in that society.  I don’t really care if people think he’s quirky, different, sensitive, or Autistic.  I just want him to know that he is incredible and that he can handle it.

He needs to be able to handle life and know in his heart that he can.  Confidence.  Confidence is a goal.

To these ends, supports are great.  If he learns more skills from his therapy sessions and can apply them to his encounters with others, that is wonderful.  If he needs technology to help him articulate his ideas or help him focus in a busy environment, let’s do it.  If I need to talk to his class in a few years and explain that high fives can be painful, I can do that.  If he wants me to stay out of it because he knows what he needs to do, then I am blessed.  If a special diet and tons of extra omega-3 help, then that’s what we are having.  Anything I can do to make life easier for him, I will.

When we first got into this, I actually asked our service provider if she had ever seen someone be cured from their autism.  Bless her, she was gentle with me.  She must have had great faith that I would learn.  She told me no. Some people do find that they are able to work with people and within society. Their autism becomes almost invisible and does not affect anything.  But it is there.  It is how their brains are working!  Autistic people work hard to find ways to communicate, to work with the rest of us who take social interactions for granted.  But that does not mean that it isn’t harder in a room with background noise.  That doesn’t mean that it might be harder in the bright sunlight, or when there are too many colours decorating the classroom.

Would I want to change Jake?  Take away this difference?  This autism?

I would want to take away his fear.  I would want to take away his anxiety.  His sleep problems.  His tummy aches.  His sensitivity to light.  His sensitivity to noise.  I pray for him.  I pray for meaningful friendships for him.  I sometimes would like to be able to talk to someone else in the house and not be interrupted.

But I would never change Jake’s brain.

This is who he is.

I will work with him to encourage his passions.  If that means that he grows up to collect Star Wars Lego, well, he won’t be the first adult with toys.  More likely he will be an environmental scientist or animal protector.  If he wants to talk all day about his special interests, then I will help him become a teacher.

Who he is has nothing to do with anxiety, dietary or sleep problems.  Those things have recovery, cures.

Autism does not.  It is not a negative.  It is a positive.  It helps him focus intently.  It gives him amazing skills of observation and memorization.  His long term memory is incredible.  He is a super-empathetic person who cares greatly about others and about animals.  He is creative, methodical, and very good at patterns.  These are the blessings of a brain that works just the way Jake needs.

I have worked through these ideas a lot over the past few months.  I really believe in them.  The reason that they are so important is because I really value Jake.  I mean, I REALLY value him.  If there had been an option, as there is for Down’s Syndrome, to determine genetically before he was born that he would have autism, I would not have cared.  I care about him.  Autism is a beautiful, complicated, and at times difficult part of him.  But I want the whole package.

The following is from the Autism Speaks Canada Mission Statement:

We are dedicated to funding global research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

http://www.autismspeaks.ca/about-us/mission/

There is a problem here.  I am hesitant and cautious about these goals.  The causes and prevention of autism?  The cure for autism?  If they find that eating sugar or something like that causes autism, and that by skipping it we could prevent autism, that would be interesting.  Would I do that?  Probably.  If they find a genetic marker for autism?  Would I stop a pregnancy that was likely to produce a child like Jake?  Never.  And this is the problem.  Research is pointing to genetics along with environmental factors.  I don’t believe there can be a cure for something that is not a disease.  I don’t believe that preventing children who have the potential to possibly be autistic from being born is remotely ethical or desirable.  I don’t even know if disorder is the right word.  It’s so negative.  Yes, there are negatives, but doesn’t everyone have things about themselves that they would change?  I will stick with difference.  Differences need to be accepted, to be appreciated, and understood.

And so I don’t agree with the mission of Autism Speaks.  I can’t agree with this mission statement.  My son doesn’t need to be cured or prevented.  He needs to be loved, respected, and cherished as he is.

Authentic Community

The pastor at our church has been working hard with all of us faithful churchgoers, trying to coach us into an authentic intergenerational community.  He has spoken about how we need to share our stories with each other in order to develop this authenticity and community.  Time and time again I have seen the power in this simple process.  When we share our stories, we share what God has done in our lives.  We share our hopes, our fears, our sins, our redemption.  We begin to appreciate other people for who they are, and how they inspire us.  We end up joining our journeys together, becoming stronger, more resilient, and more alive in the process.

God did not create us to live alone.  We are designed for community.

April is Autism Awareness Month.  Our first Autism Awareness Month as an official autism family.  As such, I have struggled with what to do.  I am interested and excited to view Autism Awareness Month from an “inside” position, from a place of more knowledge and more curiosity.

I also feel called to share something of our story.  This isn’t so easy.  We are connected to real people here in our real lives, friends and family who know us and our story, who have been supporting us all along.  And we have other people in our real lives, those acquaintances and facebook friends that don’t know all the gritty details.  Finally, we have the extended family and distant friends, separated by distance and busy lives and yet connected through history and love.  Who do I share our story with?  How?  What do I say?

This year I have decided to start small.  I don’t feel comfortable explaining Jake’s diagnosis on facebook, and I don’t feel like all the people I am loosely connected to online need to know all about it yet.  I am not ashamed of him or the diagnosis, rather I want to protect him, allow him to form his identity before I go about creating one for him online.  Also, the way information travels through facebook troubles me.  People he hasn’t yet met could hear about him and form opinions about him without meeting him in person.

However, our there are some people who are different in a few interesting ways.  One, they will probably never spend much time with my kids.  Life is just too busy, we are separated by so many miles.  People who I spent so much of my childhood with are creating childhoods for their children and the only way we are currently related is online.

And yet, this is a good way to connect and form an authentic community.  I can share our journey so far, be open about what we are going through, and create a deeper connection between us.  I know when I get an email, a phone call, or even a Christmas card, it thrills me.  I feel like we are still related, connected, on different paths but still journeying together.

The reason we don’t have authentic community is often fear.  Fear of being misunderstood, of being judged, or of bringing up something that will offend.  There is a huge desire in my generation to be heard, to tell our story, to share what is going on with my life.  This partially comes out of living a life saturated with social media.  I don’t think that all we crave is our fifteen minutes of fame, however.  I think we are craving a community, a support, a sense that we are not alone in our journey.  I know how much I’ve changed in the last six years.  I feel like I am a completely different person.  One with more sympathy, more empathy, more real friends, and much less judgment and fear in my life.  This is because I have been on a journey, and I have had people to share it with me.  People to cry with me, encourage me, pray for me, and inspire me.  Some of these people are very close to me and others have never heard of me.

It comes from sharing our stories.  Being authentic with people.  I don’t invite shame.  I don’t invite judgment.  Not happening here.

Bruce Springsteen wrote in his song “Into the Fire,”

May your strength give us strength

May your faith give us faith

May your hope give us hope

May your love give us love

This prompted me to send an email explaining Jake’s diagnosis, autism, and the blog a little to some treasured, more distant, people.  I am so happy about it.  I know they can relate to some of the parenting stuff that we are all going through.  I know they can relate to caring so much about our kids that we are diving in without a thought.  I know that they don’t know what to say, don’t know how to respond.  It’s all good.  I feel like I am spreading awareness, I am hoping I am spreading hope.  Thank you for being a part of my community.

Autism Awareness Month, day one

It’s April!  Autism Awareness Month!  I have so many thoughts about this.  Today though, I was very much “aware” of Jake’s autism.

It all started this morning when he did not wake up independently and I had to go wake him up for school.  I was thankful that he got a few moments of extra sleep, as he is exhausted, but worried, because me waking him is always harder.  Today was no exception.  I woke him and was greeted with tears.  Imagine waking up first thing in the morning and being so overwhelmed and out of control that you just cry.

After he calmed down and we coaxed him out of bed, allowing him to drag his blanket to the breakfast table, I realized that it was library day at school.  I searched the entire house for the specific library book bag, and didn’t find it.  Trying to avoid meltdowns and anxiety at school, I phoned the librarian right away and explained the situation.  She was great about it.  And ten minutes later my sweet husband found the bag.  Crisis averted.

We managed to get him off to school without further calamity.  However, I did concede to watching America’s Funniest Home Video’s while we ate breakfast, something usually reserved for the weekend.

After school I had to take him to the doctor.  He has a persistent sore rash on his back.  In preparation for this hopefully short appointment, I dropped off the other two kids with my mom.  I waited until Jake was safely and successfully in the van, and then reminded him that we were going to the doctor.  He cried.  I told him that if he was awesome we could go somewhere for a treat, suggesting the library or DQ for a sundae.  Instantly he turned around and started talking about sundae flavours.  Until we parked. Seriously.

I reminded him of our deal and promised that the doctor wouldn’t hurt him, just look at his back.  Ahhhhh… alright.  Out of the car and into the office we go.  The appointment was short, but would have been shorter if I could have heard what the doctor said the first time he said it.  Jake kept interrupting, climbing on me, putting his hat over my face, telling us, “This is boring, I’m done.”  I was frustrated, and trying to remain patient.

Ice cream was special and sweet.

We went to my parents’ place for dinner.  He had a turn to play on their iPad before dinner, which was special and made him happy.  But it also made him scream and cry when it was time to eat.  Even though I gave him three warnings that dinner was coming up and he was going to have to put it away.

He ate as though starving, then cried again when we said that there was no further iPad play time before bed.  Cried about eight times more, every time his Lego constructions fell apart.  Cried at the thought of Aiden walking too close to said Lego constructions.  Cried when it was time to go home.

Home.  We started the bedtime routine.  The same bedtime routine we have been running for about two and a half years.  I was putting Penny to bed and I could hear the sobbing because he wasn’t getting enough help brushing his teeth.  Apparently he had to do it alone tonight because he spit on his dad.  Made sense to me.  Only it lasted so long I was done with Penny.  So I helped with teeth and with Aiden who was refusing to go to the bathroom.

I left for the store as they sat down to read books.

I returned, to find Jake crying, again, that he needed another story.  I guess they weren’t listening to Dad, and he had taken a break.  So we tagged off and in I went.  I told a story, prayed with them, started to sing them a lullaby, and then… was interrupted.  Jake asked, “Did you know that the grey Ninjago is the best climber?”  Seriously.

“No.  I do now.”

I resumed singing.  I made it through.  I kissed their sweet heads and came down here.

So today, I was aware of autism here.  It was anxious.  Worried.  Scared.  Frustrated.  Sad.  Overwhelming.

It made me frustrated.  Worried.  Sad.  Overwhelmed.