Anxiety

*This was originally meant to be posted the first week of September but school started and life happened and then it was the end of the month.*

Anxiety.

That feeling when, after paying for a purchase, you turn to your child and they’re not where they were 30 seconds ago.  You look around you and you don’t see them.  That intense sensation before you spot them at a display just a few feet away.

Anxiety.

That feeling that you get when your mother doesn’t pick up the phone for the third day in a row.  That feeling in your stomach as you try to think of every reason why she’s not picking up and push away the thought of her lying dead in her home.

Anxiety.

When you hold your breath for a moment as the spinner spins rapidly on the game board and you wait to see if you’ve won the game or lost your turn.

Anxiety is a normal and natural emotion humans experience.  We all experience it multiple times in our lives.  Some things will trigger most people’s anxiety, others are very specific to the individual.  We need this unpleasant emotion for survival, it’s what pumps your adrenaline so you can outrun the chasing animal or lift a car to save the person trapped under it.  It serves as a deterrent from dangerous situations like crossing the street when the light is red.  And for most of us, once the stressful situation passes the adrenaline works itself out of our systems and we feel better.  If it was an especially big stressor, we may be “jumpy” for a couple of hours or even days after the situation passes but then we’re ok.

An anxiety disorder happens when this system that is meant to help us doesn’t work properly, causing havoc on a person’s life.  It presents itself in different ways but the end result is the same: what should have been only a slight spike in anxiety that passes in moments turns into debilitating events.

Nicholas has an anxiety disorder.

Lessons: "Defying Gravity"

Most people don't know Nicholas is a Rainbow Baby.  I was young and in school when I was pregnant with him and I have always been seen as the "good girl" so most people can't imagine me getting pregnant before Nicholas.  No one knew about my first other than one of my roommates and her boyfriend, who drove me to the hospital that frightening night.  But before Nicholas there was another that didn't make it.  So when I found out I was pregnant with Nicholas I wanted to keep it quiet until after that first uncertain trimester.  But as fate would have it there were issues from the beginning and at about 6 weeks I was told he had a "marker" for down syndrome.  I felt I had to prepare my family for this "tragic" posibility*.  That marker, and a new one, were present at a second ultrasound at 12 weeks.  Two separate screening blood tests confirmed it.  Fortunately, they were all wrong and Nicholas does not have down syndrome.

Rewind about two years before the year I was pregnant with Nicholas, back to 2005.  I made a trip up to Hollywood, like I did every so often, and went by the Pantegeous Theatre.  Wicked was playing and I remember seeing the signs in front of the theatre and wishing to be able to see it some day.  As a full time student I did not have the money for a ticket but someday!  I checked out the CD from my university library and copied it on to my computer and fell in love.

The Right To Grieve

When I was young there was a special person in my life.  This person was not in my daily life but I did hear from them and see them periodically.  It was not unusual to go a couple of months without a word.

One day my brain did one of those fast leaps from subject to subject and suddenly I realised I had not heard or seen this person in a very long time.  I went to ask my mother about this person and without even looking at me she tells me that this person died over a year ago.  I was shocked.  I asked her why she hadn't told me and she said she didn't think I would be able to handle it.

I was 13 years old when this happened.

Nicholas had been fortunate enough to not have to deal with losing a family member.  However, several months ago he realised my grandmother died before he was born and it really upset him.  From time to time he brings it up again and it upsets him.  I hug him and kiss him and soon he's ok again.

Last week things changed.  Last week he experienced his first loss.

After a good grooming.

During Nicholas' first year of life we lived with my sister.  When he was about 6 months old (give or take) my sister took him with her (an errand or something).  When they returned I heard the car pull up to the driveway, heard her turn off the car and heard her open and close her door.  I then heard her open a second door and I knew she was taking Nicholas out in his car seat.  Then I heard her shouting.  I rushed to the door and see her holding the carseat up and a little white dog on her hind legs batting up at it.  Every movement my sister made the dog followed.  She started coming towards the front door and said that the dog came out of nowhere.

It was hot, it had been a hot week, and we knew this dog had to be thirsty so we gave her some water.  She was friendly so we figured she was lost but we had never seen her before.  She was the ugliest little dog I had ever seen.  It looked like she had gotten an awful haircut making her look skinny and weird.  Since she didn't have a collar but could tell it was a girl we started calling her Lady.  After several days of walking her around the neighbourhood to see if someone recognised her they decided to take her to the vet and see if she was microchipped.  They found out she was not microchipped and that she was a poodle with a bad haircut.  So they decided to keep her.

She immediately took to Nicholas.  My sister said that when she put the carseat on the ground to close the door Lady came running towards him.  She was always near him and when he cried she would cry.  This would become Nicholas' dog.

We moved out of my sister's house when Nicholas was 2 years old but he continued to visit on a regular basis.  When I started working full time he was there daily.  Lady's small size made her perfect for him.

On Thursday of last week Lady's time on Earth ended.  She was old and her body was not holding up anymore.  I had to make the decision of how to tell Nicholas this news.  To complicate things not only had he told Lady to get better because he didn't want her to die that morning before going to school, his aunt was leaving on vacation that evening.  He would not be back at that house for a whole week.


I have made a vow not to lie to him and this was no exception, I knew I had to tell him.  But Thursday evening after so much change didn't seem wise.  I had no idea how he would take it, how hard it would be on him.  I didn't want him to have a bad night and have him have a bad day at school on Friday.  I made the decision to wait until Friday evening when I got home from work.  This way I would have time to do some research as to how best to handle the situation and if he took it extra hard then we could stay up cuddling without worry.  And then have two whole days to be there, at will, if he needed extra hugs.

Everything I read confirmed my decision.  At his age and understanding level he needs to be told the truth sooner rather than later and that it had to be an honest discussion not sugar coated with deceiving language or well intentioned lies.  So on Friday, after I had been home for a little while, I sat down with him to talk.

Nicholas was very upset and it was the hardest half hour I have ever experienced.  He was completely devastated.  I can honestly say that watching your child in such pain is worse than experiencing it yourself.

"I loved her so much."
"This makes me feel very sad."
"I didn't want her to die."
"I don't like to feel like this."
"I want her to come back."
"I will miss her so much."
"All I have is memories."
"She was a special dog."

It was heart breaking for me to see him in such pain and not be able to do anything but hold him tight, knowing that there was nothing I could tell him that would make it all better, knowing that there was nothing I could do that would fix it.

But slowly he stopped talking.  Then his crying calmed.  I cleaned his face and he was sad but ok.  I knew it wasn't the end of it, that he would continue to have episodes of this kind of sadness off and on for a while.  But I didn't know for how long, and that was unsettling.  We gave him a treat (ice cream makes everything at least a little better) and made sure he knew it was ok to feel sad and angry and it was ok to come get hugs when he needed it.

It's hard.  And I know many parents have had to go through this with their children.  I know every child is different and reacts differently to the death of a loved one.  I know some relationships are harder than others, losing a parent is more difficult than losing a pet.  And I know that no matter how much a parent prepares or tries, that helping a child grieve is heartbreaking and difficult.  Especially when the parent is grieving too.  But it must be done.

Children have the right to grieve.

And I believe that if a child understands the concept of death, if they understand that it means the person or animal is no longer with us and will not be with us in the physical form again, then they have the right to know when someone they love has died.  They have the right to go through the grieving process at the time of death and not be kept in the dark.  Just because it is difficult and painful does not mean the adults have the right to make things easier on themselves with lies.  It is selfish and irresponsible.

It hasn't been easy and I've begun to second guess my approach, my choice in words, if maybe I should have held on to him a little longer.  Or maybe cleaned his face sooner.  But I know these details will fade and he will ultimately remember that I told him his beloved pet had died and that I held him close and let him cry.  I take comfort that he will not have to one day realise that she did not run away or get lost and then wonder what else I may have lied to him about.

I was lied to, I always wonder.



Sweet Lady, you will be missed.

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.

Eight!

I know I’m two weeks late, but life is too busy to spend time in front of a computer typing.  This is good, we are spending more time together!  But it’s also not so good, leisure time to do stuff is rare.

Anyway, Nicholas is 8 years old now.  I guess it’s important to compare how he is today to how he was a year ago.  What has happened in a year?  A lot.  He has physically grown, which is always a plus medically but a bit sad personally.  He no longer fits nicely in my arms though we still try quite often.

Columbus Day

I don’t remember every having the day off for Columbus Day while I was in school (kindergarten through university) and I definitely have never had the day off from work. And like most people in this country, I was taught that Christopher Columbus discovered America and opened the way for the colonies to be established and everything was just AWESOME! In the early grades, anyway. As I got older and learned more about Columbus and the true history of our country, skeletons and dirty laundry and all, the more I disliked this man.

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.

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:

The Story of Nicholas

Like most stories that are only told orally, there are many details that get left out in order to get the point across before the listener falls asleep.  But sometimes those details hold the most meaning, the most impact.

The story of Nicholas, how he came about, is not one of years of trying to conceive, there was no tragic event, nothing inspiring.  His story isn't about my pregnancy, though that's quite a story all on it's own, or even him specifically.  It's about something a doctor felt the need to mention.  And an outfit.

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.

Trip To The Aquarium

A couple of weeks ago the Aquarium was having a special promotion for spring break: opened late and arrivals after 5PM were $15.  Since I work until 5, and walking distance from the Aquarium, this was a perfect opportunity for us to go.  Nicholas seems to really like it and has been asking to go back since.  We may consider annual passes in the future.

A lorikeet (there must be a reason for these birds at the aquarium,
I have just yet to figure it out)

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:

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...”