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.

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.

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.

I Have Failed

Across the street from where I live there is a little house.  An older lady lives there with what appears to be her teenage son.  I sometimes see a girl but mostly just the mother and son.

I Am Not A Father

Every year I get the same thing from various people and while I do understand and appreciate the sentiment, I find it a bit insulting.  As always, it's my personal opinion and to each their own.

A mother is a female and a father is a male.  To me, that is as far as the distinction goes.  To say a mother is special because she carried the child diminishes the role of females who have adopted children or who have willingly taken on the responsibility of a child not theirs.  To say a birth mother is more special than an adoptive mother or step mother is insulting at best.  And where does that leave the father?  Is a man less of a father because he does not share any genetic material with the child?

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....

To All The Educators Who Encouraged Me

To all the teachers, teacher's aids, counsellors, principles, and tutors who encouraged me to do well in school; the ones that told me I needed to graduate high school and go to college, the ones that told me not to settle for community college but to get a bachelor's degree, the ones that warned me that not doing so would lead me to a job at McDonald's or Walmart that I would never be able to leave or properly live off of or have a happy and fulfilling life with:

I hope you, and those like you, never talk to my son.

The Homeless

*warning: very long*

Timing is everything and maybe this is a sign.

On Saturday we went to have a late lunch/dinner at a fast food place and not far from us was a homeless man just sitting, minding his own business.  He wasn't bothering anyone and I didn't smell anything when I walked passed him (I have a very sensitive nose) so I didn't find him bothersome.  It was a really hot day and he was probably just trying to stay cool.  He asked a couple of people, maybe 3, if they had spare change after they took time to give him a look longer than the normal split second.  One lady offered to buy him a burger, which he accepted.  A young man, probably older teen, was selling chocolate for some religious something or other.  I don't know what possessed him to go ask the obviously homeless man if he would buy a chocolate bar for his cause.  The man replied with, "If I had any money on me I'd buy the whole box."  They talked a little and the young man with the chocolates gave him a postcard with information to some sort of shelter or group home or something sponsored by his charity and a chocolate bar.

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:

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...”

Going Out With a Bang

Tomorrow is the first day of November.  Tomorrow Nicholas will be 5 years old.  As October closes (finally!) I sit back and look at the events of this month.

Destruction.

Nicholas has always been a well behaved child (for his age) and never really been destructive.  He has broken and destroyed things before but mostly in play or not knowing that he was causing damage.  This month has had more destruction than any other time in his life.

Pictures were edited to highlight damage

Ripped the screen.  For no reason and continued to inflict damage after being told not to.

Potty Training: A Year Later

As the Fourth of July passed I realised it had been a year since I started the potty training journey.  Lots has happened in one year and I can say with confidence that he is fully potty trained.  He has the errant accident but our dry days largely outnumber the wet undies.  He sleeps in underwear and I've had less than a handful of night accidents.

So all is great, right?  Gotta love this diaper free life like everyone said I would... NOT!

Teen Suicide: A Little Close to Home

It's been too long, a lot has happened, and the truth is I've been lazy.  Catch up may come later...

A little less than a year ago someone shared a video somewhere, I'm not really sure where, called "60 Days Later..." which was made by the parents of a teenager who committed suicide and how they were doing 60 days later.  Through this video I found their Facebook page and have been following them since. 

Yesterday, this page posted a link to a page recently created to keep people updated on a teenage girl who attempted suicide this past weekend.  Apparently she shot herself in the head and, as of this point, looks like she may recover (though with many problems).  As I was reading through the page and the comments I was overwhelmed by how many people were posting that they lost children to suicide.  I couldn't keep count!  I knew it was a problem and in recent years bullying has been highlighted as a major cause but I just hadn't been forced to see so many actual accounts.

The Potty Thing

We've been potty trained for a while now and I'm still not fully satisfied with it.  Not with the results, we're doing quite good, but how it all works.

My child only pees 2, maybe 3, times a day.  While this is good because I don't have to make a potty stop every couple minutes, it can be quite frustrating with planning.  I know he can hold it for several hours but that is several hours after he has gone.  So if he has not gone I do not have several hours.  And I can't make him pee.  I've tried sitting him on the potty when he has not asked and he simply does not pee.  So I have to resort to back ups like diapers or disposable trainers just in case he decides he needs to go when there is no way I can take him, like on the bus.  It would be great if I could have him pee right before we leave and know with certainty that I can get to my destination that is only an hour away with no problem.  But he won't pee.  And if I have a time I need to leave by and he does not pee I have to go through the process of undressing him to put on a disposable trainer.  Then when we get to our destination undress him in the bathroom to get him on underwear.  Too much hassle!

Missing Out

Every day I feel like I put down to bed one kid and get a whole different one the next day after work.  I'm missing out on so much and it makes me real angry.  Every day I'm told of the new things he says and does and tries and I don't get to experience them.  He is like a one hit wonder, he'll say something or do something once and then you won't hear or see it again for a long time.  And what's worse is that I can't even say it's all for a better future.  I'm at a crappy job earning less than most high school drop outs.

I look at this little person, A PERSON, and I don't recognise him.  I had a baby, I strapped in a baby into that car seat not too long ago.  Where did this little person come from?  Who is this?  I don't even recognise him anymore.  He does things and says things that are totally strange to me, completely unlike who I had with me before.  He is practically a stranger sometimes, at that really saddens me.

This really bites, and I am unhappy.

Working

Funny, I am typing this at work, with about 13 minutes before I start.

I told someone, when asked how I liked my new job, that I'd probably love it, find it perfect, if I didn't have a three  year old.  They were perplexed.  So let me go through this again.

The job itself is what I love doing most: typing.  All day.  LOTS of work, never a 'down' time so the day breezes by rather than crawl.  The people are nice.  There is AC and a well stocked break room.  My job is fairly easy.