Funding For Autism:

I have, through no choice of my own, been catapult into the world of autism.  I do not consider myself an expert in autism.  I do not consider myself well versed in autism.  I am fairly adequate in the specific ways autism affects Nicholas.  And I am fairly aware of what autism may look like and the kinds of treatments out there.  I also know about the many studies being published daily, it seems, showing where autism research is focused since they inevitably end up on my newsfeeds either shared by pages I follow, friends, or sponsored stories.

And they make me mad.

The vast majority of these studies go something like this: "<Insert some common variable> in pregnant women has been linked to autism."

Based on what is known of famous historical figures, it has been determined that at least some of them were probably on the spectrum.  Of course we can never know for sure, a diagnosis for autism cannot be made out of purely anecdotal evidence, but there is a pretty good level of certainty based on what is known.  This suggests that there were likely more individuals with autism during these periods of time whose lives were not well documented.  Many of them could have easily died as young children, a lack of awareness of danger is a common trait of autism.  It seems that autism has been around for a very long time and could just be part of the human species like left handedness.

Misleading "Truths," New Truths

As 2015 comes to a close, I find myself reflecting on this year and what we have been through, what we have learned.  Specifically, what we now know about Nicholas and his Autism that we did not know in 2014.  And, in turn, what we now know about me and my family.

Lessons: Coming To Terms (Or Not) With A Label

Disclaimer: this post is about a very touchy subject for some people.  I am not referring to any group of people in general nor am I talking about my thoughts or opinions about any group of people.  I am talking only about myself and my son.  Like so many things in the human experience, feelings are not black and white.  

Also, this post is long.  I wrote this over the span of many days, going back to it over and over as I went through this journey.  Instead of just giving you the end result I have taken you on the journey and thought process with me.  It may seem disjointed at some parts and that is because there were days when I did not write anything and then came back to add to it.  My hope in posting this is that maybe it will help someone, at the very least, understand that every child and family is different and that their journeys are different.

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Having a list of diagnoses has meant we have a list of reasons why he may be behaving the way he does, a list of suggestions as to how to change undesirable behaviour, a list of reasons why he isn’t like the others.  But it’s been just that, a list to attribute behaviour to.

He relies on a schedule so heavily because he has Asperger’s.
He paces because he has anxiety.
He doesn’t do well in large crowds because he has a sensory disorder.

One thing he has been struggling with is managing his emotions, specifically when he is upset or angry.  Big emotions are hard to understand for a typical child.  Add in Asperger’s, which limits his ability to comprehend the way our world works and limits his ability to learn by example, social cues, and previous experiences and it seems to be about one hundred times more difficult to understand.  So he goes to therapy to learn how to identify and communicate emotions but this learning takes time.  In the meantime he has regressed to more primitive ways of communication: hitting.

Answers! Sort of...

We finally got the much awaited phone call and appointment and psych report.  We got answers!  Of course, being Nicholas, they are not the clean cut answers we hoped for.  But ANSWERS!

Lessons: Careful What You Wish For

When I was pregnant I had many "when you're older" conversations with my belly.  These consisted of things I wanted him to experience, things I wanted to do with him, things he'd be allowed to have, etc.  Because I was fairly certain he would be an only child I thought about extracurricular activities.  Would he like to join a sports team at a park?  Maybe he'd prefer some sort of martial arts.  Or dance.  Or chess!  Then I thought about how I'd react to these preferences, if there were any I'd object to.  Some women eat pickles and ice cream, I talked to my growing abdomen, to each her own.

Answers, Still Waiting

I had hoped that my next entry would be one with the answers we've been waiting for.  But no such luck.  After so many appointments and evaluations we still don't have the one answer we want the most from the entity that has the most weight.

8 Years Ago

I don't recall off the top of my head if I've shared much about my pregnancy here before.  I'm remembering one post but not much else.  Anyway, my pregnancy wasn't great.  It wasn't awful and I didn't have major complications but it wasn't the glorious walk in the park we all hope it will be.

It was stressful.  So very, very stressful.  What made it the most stressful was that I was not sure if I would be handed a child with Down Syndrome or not.  I refused the amniocentesis which left me with two positive screening tests and contradictory ultrasounds.

But on this day, 8 years ago, I met my little shrimp for the first time.  I saw him squirming on the screen and heard his tiny heart beat.  I was told he wasn't quite right and more tests would be needed.  The words "markers" and "trisomy 21" were uttered for the first time or many yet to come.  And on this day, 8 years ago, I looked at that weird looking thing on the screen and told him he was a keeper, regardless of what he had in store for us.

NOV07 7.0 - "Nicholas"

WOW!  He is SEVEN years old and I am in disbelief!  It just doesn't feel like it has really been that many years.  He is now more than half my size and that still amazes me every time I notice.  Granted, I'm short so that's not very tall and he is still the shortest first grader in his school.  But still, DUDE!  Pretty soon he'll be my size, and that's not an exaggeration.  I am happy I have a growing child, my wallet is begging him to slow his growing.

On his birthday we went to Disneyland and we stayed late so that he could watch the fireworks.  He is now tall enough for a lot of the larger rides and he enjoys those.  On Sunday we had cake and pizza with grandma and parents.  This coming Saturday he will have his birthday party at his aunt's and finish off his birthday month celebration with Thanksgiving.

His 6th year was packed with all sorts of experiences and new things and changes.  Not all were good.  We have learned a lot this past year and grown a lot:

Keeping Afloat

I can't say I'm the most positive person around, my wife likes calling me a debbie downer.  It's funny because, despite her accusation, I make great efforts to stay positive and not dwell on myself.  But right now I need to vent a little.  Maybe a l not.  I'm only human, I have feelings and emotions and pains.

For the past two or three weeks... maybe a month, I've not been well and the only thing keeping me going forward is knowing it could be worse.  And it looks like life is on a mission to make that as painfully obvious as possible right now.  I have two friends that have lost husbands, one with a daughter the same age as Nicholas.  One friend who was in the hospital for almost a week due to strong contractions and, basically, premature labour.  She's only 26 weeks along and very young and scared.  Someone who miscarried at 30 weeks due to shitty doctors (not in the US, no possibility for suing).  I could go on with what is going on around me and I do feel for these people and I know full well their situations are far worse than mine.

But I still have mine.

The Grocery Store

I have been wanting to write this post for a while, put down in words what a typical outing is like with Nicholas.  It just never happens because it never seems quite right.  And then I saw this video.  So let me start with our experience.

This is what a typical trip to the grocery store looks like:

We walk in, the flower display is on the immediate right.  Yes, Nicholas, those are very pretty flowers.  No, we cannot buy any flowers.  Please let go of the flowers.  I walk away in hopes that he will follow.  Come on, Nicholas, stay with me.  He runs to the berries.  You can have one kind of berry.  You want raspberries?  But look, there aren't any raspberries.  You can have blueberries, strawberries, or black berries.  Are you sure you don't want any?  I grab blueberries anyway, he'll ask for them as soon as we're home.  Nicholas, please stop spinning.  Stay close to the cart.  No running Nicholas, please stay close.  Can you help me?  Get some cheese for me, the one in the purple bag.  The purple bag, Nicholas.  Close the door nicely.  Nicely... Nicholas, please don't slam any doors!  Come one Nicholas, lets go get milk.  Stop spinning, please stop spinning.  Watch where you're going, Nicholas.  Please look in the same direction your body is moving.  Keep your hands to yourself, you're going to knock something over.  Please stop spinning.  Nicholas, no running!  No we're not getting cake today.  Because we have some at home.  No running!  Stay next to the cart, here hold the box of sandwich bags.  Oh good, peace, we're almost done.  Nicholas, please don't open that.  Here, can you put it in the cart?  Thank you for helping!  Please stop spinning.  Look!  You hit someone!  Can you apologise for hitting them?  See, this is why I say no spinning.  Keep up Nicholas....

Is He Just Bad?

I don't like to introduce my child, either in person or in conversation, by stating he is autistic.  I feel that it is only one part of who he is and does not need to be mentioned any more than his obsession with Legos or trains need to be mentioned.  But just like Legos and trains, it does come up sometimes.  And when it does I have often been asked if I am sure he is autistic, could he just be bad.

This is where I take a deep breath and remind myself that I am a civilised human being.  In my mind the answer goes something like this:

I Blew His Mind Away

The other day my son was sitting at my desk, next to the kitchen, as I was preparing him a sandwich.  He began singing a song about the months of the year that I remember singing in Kindergarten so I joined him.  His little eyes lit up and we sang the rest of the song together.  When we were done he asked me how I knew the song and I told him that I used to sing it in Kindergarten too.

Autism Awareness

Apparently today is Autism Awareness Day?  At least according to our office manager, who also has an autistic son.  And apparently you are also suppose to wear blue in support of autism awareness and everyone got the memo except me because I’m just suppose to somehow know all there is to know in regards to activism and autism.

Unsolicited Advice

Part of being a parent is getting unsolicited advice.  I have come to accept that and, as a parent, I have several responses that I use for such advice:

“Oh, that sounds interesting. I’ll look into it.”

“Thanks, but that doesn’t really align with my parenting style.”

And an oldie, but works:

“Thanks...”

Back! Again...

Back in November I had written a rather lengthy post but did not publish it because it was late and I wanted to give it one more read through for grammar and what not.  Well, life happened and I never went back to it.  In retrospect, it seems senseless now and I may tell that story at a later date or in a series of posts later on.  Life has happened and so lets get caught up.