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.

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.

Demons Of The Past

Sometimes life happens. I work on an entry and life gets in the way and it doesn’t get done. Then another idea pops up and I go with that one. And that one doesn’t get done for the same reason. Sometimes there are two or three unpublished entries between published ones. Right now I several I would like to finish and probably just as many that should just be deleted because they’re old and probably not relevant anymore. I am usually not able to re-visit these entries because life will throw at me more interesting, relevant ones. But life is unpredictable and I felt that this one, started over a year ago, needed to be shared today.

***

The day seems to be a typical one, just another day in a string of days, walking down a street you walk down daily.  Your body starts to tense and you attempt a deep breath but your chest feels tight.  You attempt another breath and you are suddenly aware of the sirens.  The sound is far, so far that none of the cars in the street are stopping or making an effort to pull over.  So far that no one around you seems to even hear it.

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.

Dear Niece: Keeping Memories, Pt. 2

Dear Niece,

Can you believe he is 3 months old?? I can, but I remember when Nicholas turned 3 months and it quite literally felt like we had just left the hospital a week or so ago.

By now little Ginger Baby has learned to do a lot of things and has grown quite a bit. This growing leads to a little, tiny, problem: outgrown clothes.

A Good Weekend!

We had an exceptionally good weekend. "We" meaning Nicholas. There were no tantrums, no major arguing, no big attitude, etc. This is rare and made me happy.

Last weekend came as a much welcomed surprise since he had an especially rough week. His outbursts and lack of self control had been apparent both at home and at school all last week so I was prepared for a long weekend of the same. But when the weekend was over and I realized that we had the opposite of the kind of weekend I was anticipating I began thinking about what it takes to have a "good" weekend. And I think it is important to share this because most people don’t understand Nicholas’, and therefore our, unique struggle, especially since, at first glance, Nicholas appears to be a typical child. When he starts to experience his issues in public strangers think he is just misbehaving and familiar people (family) tend to forget the complexity of the situation.

Dear Niece: Keeping Memories, Pt. 1

Dear Niece,

Your baby has been here for over a month now.  He has lived through holidays and family and you've already got plenty of stories to tell.  He's reached milestones and you've got many pictures.  You are living in the now and enjoying your baby.  It is a wonderful time!

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.

Dear Niece: What To Do Once Your Baby Is In Your Arms

Dear Niece,

Now that you finally have that baby in your arms and have taken in the sight of his precious face, make sure you take a sniff and enjoy that new baby smell.  Seriously, hold him close to your nose and take a deep, long breath of baby!

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.

More Important Than Punctuality

Our days are full of appointments and schedules, it's just the way it goes when your child needs extra support.  Many days I feel like we spend our family time together rushing to get out the door on time, in some sort of office, or rushing to get things done before bedtime.  And in our life, even preparation and routine doesn't guarantee being able to leave on time.


The mornings are especially crazy.  None of us are morning people and while our tasks are fairly routine, there is always something slowing us down.  Sometimes I had a bad night and am slower than usual in the morning.  Sometimes Nicholas has an attitude and is not cooperative.  Sometimes my wife has a bad night and she can't be as quick as she usually is.  Sometimes we have a combination of things.  Sometimes the shoe laces are knotted and take longer to get shoes on.  Once everything is finally done Nicholas and I fly out the door and power walk out the complex to his ride.  Sometimes we get there first, sometimes the ride is waiting.

Dear Niece: Baby Advice, Because I Haven't Given You Mine

Dear Niece,

Now that you are reaching the end of the waiting part of your parenting journey you have probably began receiving all sorts of parenting advice. Let me assure you of one thing: It will not end. Ever. Someone, somewhere, will always have some sort of advice to give you whether you ask for it or not, whether you want it or not. And since I don’t think I’ve done my fair share in the advice area, and because I think I am the best parent on this planet and therefore an expert on this parenting thing, let me give you the best advice you will ever get (/end sarcasm):

Reading

Seeing Nicholas struggle with reading has been real difficult for me. He learned his alphabet real early and could point out letters by two. We would do letter flash cards and he would know all the letters in any order presented to him. He also learned the sounds to most letters. At two years old, I thought I would have an "early" reader.

But that was it.

Then he regressed.

It should have worried me when shortly after his 4^th birthday I pointed to his name and asked him what he said. He looked at me blankly. I asked him what the first letter was and his response was "B." I thought he was being silly, just not interested. But that was to be the way it would be. He no longer knew which letters where what and letters and numbers were the same to him. While I understood confusing an "O" with a "0" I didn’t know how he didn’t see "7" as seven.

I remember watching him push all the button on his microwave attached to his play kitchen. He pushed them in order, one by one, and calling, "I, S, E, H, S, B, T, B, P, O." He was about three years old when this happened and while I found it odd, red flags did not come up.

By the time he started kindergarten he knew the alphabet once again, though confusing letters such as "b" and "d" and he could not write any letters. He could recognize him name. I felt that would be enough to get him started. But that just wasn’t the case.

The first half of kindergarten was a nightmare for all of us. He would not be writing any letters, with prompting and help, until the end of kindergarten. First grade saw a lot of progress. He began trying to spell words and though they were mostly incorrect his attempts were genuine and you could tell what he was thinking. I still have the paper on which he wrote "wtr" to let me know he wanted some water. It was very special. At the end of first grade he had a couple of kindergarten sight words down and he could copy words but his penmanship was almost illegible.

During the summer I was determined to not only not let him forget what he had learned but to also get him to make progress. I came up with a curriculum that included daily writing and sight word flash cards. He resisted a bit but did make excellent progress. He started reading level 1 books with help. I was proud.

The second day of second grade I get a call from his new teacher. Amongst other things she wanted to know what had happened to Nicholas over the summer. The child she was seeing did not match the report she received from the first grade teacher. He knew many kindergarten sight words and some first grade words too. He was blending sounds and reading. I beamed.

School has been in session for a month and a half and he is making progress.

Several months ago we started a subscription to Zoobooks. I knew he wouldn’t be able to read them but thought we could read them together and by the time he could read them on his own he would need to re-read them anyway. So yesterday he was flipping through the pages of one of the books. I spotted a short description next to an image and I asked him to read it to me. His anxiety kicked in and he was stumbling. I started breaking down the words, showing him they were sound combinations he knew. After two words he was reading. He was actually reading a Zoobooks magazine!

It was wonderful.

He is no where near the reading level is supposed to be at. But the way I see it, he is reading no worst than I was at the beginning of second grade. Actually, I know he is reading better than I was. Back then reading didn’t start in kindergarten and no real reading was done until second grade. So he is doing well. And making progress.

Dear Niece: The Only List You Need of What To Pack To The Hospital

I sat in the hospital for hours waiting for some giant bird to bring me my baby.
Eventually they rolled me away to the OR... there was not bird.

The clock is now ticking on baby’s eviction notice and thus comes the time to prepare for the hospital! Being your first, you never know how slow or fast everything will progress so I suggest having a bag ready ahead of time with the stuff that can’t be packed in advance easily accessible.

I prepared a bag and went to the hospital and some stuff was never touched and some stuff I had to have brought it afterwards. So here is my list of what you need to bring.

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.

****

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.