Parenting When Autism Is Your Normal

Our oldest son, W, is autistic but it wasn’t until he was six that we began undergoing testing for this and he was seven when he received his diagnosis.  Our youngest son, C, has cognitive and motor delays and other special needs but these needs rarely affect his interaction with others or his behavior.  They are mainly delays in understanding and learning.

W was an only child for five years before we adopted his younger brother so, as parents, we had nothing to compare his behavior and development to.  It was normal to us and yet on some level, we suspected that it wasn’t what everyone else had to deal with.  W is expressive, charming and eloquent when he speaks and this along with other common misconceptions of what autism consists of, led us to doubt for years that he could really be autistic.

Adopting C was an interesting revelation in parenting.  Here was a child who needed professional help in almost every area but he didn’t struggle with social interactions nor was his behavior worryingly inappropriate.  We thought yes, he needs intensive speech therapy, physiotherapy, therapy for his fine motor skills, etc., but the gut wrenching worries that we had about W just weren’t there.  After awhile, this led us to think why weren’t we more concerned?  On paper at least, C, was the child who officially needed help.  In actuality, W, was the child who was (at this point) unraveling daily before our eyes.  The child that we were deeply concerned for without knowing why.  The child that we were at a loss to help. 

The worries we had for W were complex, pervasive and accompanied by a deep underlying fear and in retrospect, an unconscious knowledge that something was different.  But what?  Whereas the worries we encountered in parenting C were straight forward, almost a relief by comparison.  They felt so normal.

C might fall down or fall off something or have a quarrel with another child.  He might have a tantrum or catch a cold or the flu or struggle to keep up in school.  These were all normal concerns.  Worries we could handle with confidence.  I remember how these normal worries made me feel, for the first time, like a normal parent.  These everyday concerns felt like a gift to me. 

These differences between the way we felt parenting C verses parenting W became more apparent as time went on. 

On one occasion, I took C to a huge picnic in the city,  complete with blaring music, loud crowds, numerous bouncy castles, and a general atmosphere of friendly, boisterous chaos.  A situation like this with W would have caused my stomach to twist with anxiety and I noticed the absence of this with C.  I felt an unusual sensation of trust.  I could depend on him.  If things went wrong, I was capable of handling it.  He loved this picnic.  For four hours straight, C raced around shrieking with joy and excitement, tried everything there was to try, made friends of the other children, made enemies of the other children, ate four plates of food, and at the end of the day was sweaty and happily tired.   His refrain in the car on the way home was “So fun Mommy!  So fun!”

I remember smiling a slightly bewildered smile and thinking “That’s odd.  He enjoyed himself!”

Looking back, I understand that I should have anticipated his enjoyment.  That it was a common reaction to a fun day out.  However up until this point, most of our “fun” days out with W had ended in tears, screaming, rage, meltdowns that could last hours and unconsciously I would brace myself for uncontrollable chaos when we returned home from any “fun” outing.

For years, I didn’t understand why every time we would go out to parties, or events that I thought W would enjoy, we would almost always both leave in tears.  I would end up sweaty, exhausted and sick from the anxiety of constantly trying, trying so hard and failing almost every time, to avoid stressful situations.  To avoid what I now know are autistic meltdowns.  To avoid other children because something inside me understood that in order to maintain calm, we would have to avoid interaction with his peers for the most part.  I couldn’t sit down and relax.  I had to follow him to make sure that everything was ok.  I knew it could change in a second, that suddenly all Hell could break lose and if it did I had better be there to handle the fallout.  I just didn’t know why.

Yet although this is seemingly contradictory, W longed to go out, he longed to be social.  He would be excited at the idea of going to a party or the playground, etc., but when we arrived, reality would quickly set in.  It was loud.  It was bright.  There were too many people.  So I was always on guard because I was aware that at any moment, the uncontrollable screaming could start, the lashing out, the throwing things.  I knew at any moment, I may have to physically hold his hands and his body still.  I knew that there would always be someone walking by, or giving us a look of disgust, tutting their disapproval at this display of outrageously bad parenting on my part and out of control behavior on my son’s part.

The unpredictability of everyday life was emotionally exhausting.

Going out was difficult.  Almost without fail, it didn’t go well. We had no car rides home with the refrain of it being “so fun” sounding in our ears.  Our car rides home from most events were filled with blood curdling screams and the sound of W’s head banging hard again and again into the back of the car seat. 

We became “escape artists”.  I can’t say how many places we had to rush away from, my husband and I saying to one another “Let’s go!  We have to get home fast!”  We would arrive home, W would run to his bed and spend hours there literally, his small body heaving with great gasping sobs until he fell asleep.  Sometimes he could hold it together in public but it was always the same when we came home, there was always a price, always a fall out.

Over the years I built up an overwhelming sense of anxiety about this lack of control I felt but because it was my normal as a parent, it became for me, simply normal and for a long time, I accepted it as such.

We accept as normal what we are conditioned to accept as normal.

When W started pre-school at the age of 4, I would drop him off and then go home, sit on the couch, my stomach in knots, my heart pounding, feeling a strong sense of impending doom.  Danger. Danger.  Go back.  Get him out!  Get him home!  Make sure he’s safe.

It didn’t occur to me that these were not normal thoughts.  That this wasn’t normal parenting.

I would watch the clock and rush to pick him up early.  I would often find him standing alone outside his body pressed against the fence, head banging into it or inside sitting rocking with his head banging against the wall.

“How was his day?”, I would ask, forcing myself to sound cheerful and calm but always with my heart in my throat.

“Not good.  He didn’t answer any of our questions.  He would pretend the playground was an ocean with fish in it!  We told him it is not but he insisted and wouldn’t stop saying it is!  He didn’t get a star because he couldn’t lie still and be quiet!  He hits other children.  He repeats himself all the time!  He always needs to know what will happen next!”  *exasperated sigh*

I could barely stand listening to this daily litany of W’s faults.  It made me defensive because although on some level I knew something was not quite right, I saw his charming quirks, his funny behavior, all the things that made him so unique and so precious to me and I fiercely wanted to protect him from a world that I was beginning to view as incapable of understanding him.

We would get home and first he would run to the bathroom and be sick from the stress of the day. Every day without fail at the age of four, he was sick when he came home from pre-school.  I recognized his need for withdrawal and quiet and so we would put on a cartoon and he would lay on the couch recovering for the rest of the afternoon.

This was my normal.  At this point, I could only see that “they” couldn’t see how good and sweet he was.  Yes, different, I willingly acknowledged that, but so bright!  So engaging!  So imaginative and unique!  The light of my life.  My baby.  The one I had waited and waited for.

A part of my resistance had to do with the fact that to me, different has never been equatable with wrong.  No one over the years ever suggested that maybe we should try to find out why W was different.  However many people told me I had to find out what was wrong with him.  It’s amazing how a word can make all the difference.  When I was told “there is something wrong with your son”, my determination to protect him would increase and my defenses would naturally go up.  Maybe if they had said “something different” it would have been easier to listen to them.

It was only when we adopted his brother C, (at this point, C was 3 and W was 5), that we began to experience first hand how a neurotypical child can behave.  As I would watch C play with his cars, I would feel mild confusion because W had never really played with toys.  (Or rather, he would play but in an unusual manner that I now know is usual for autistic children.)  So, I would exclaim in wonder to my husband “Look at that!  C is playing, just… playing!  Isn’t that interesting?” As though that were the unusual thing. 

I still catch myself treating the typical behavior as though it were unusual.  Marveling in the evening to my husband as we sit and relax, “It’s so strange, when I take C to preschool, he’s happy!  He runs in and greets people!  I just don’t understand it!”  Or “Funny how he can just play with that kid over there!  Do you see that?!”  I am puzzled and enthralled by the things most parents find normal behavior.

My perception of “normal” though remains somewhat distorted.  

Perhaps this is good though.  My concept of normal is a fluid thing.  It’s why for so many years I simply accepted W as he was without pushing to discover why he was the way he was. 

I adapt fairly easily when it comes to the needs of those I love and to challenges.  I will read all the books and articles, take courses and learn as much as I can and be an advocate for him and for others when possible.

My normal as a parent is not yours and yours is not mine.  My experience of parenting due to factors like adoption, other special needs, and now this, is quite different than some others.

The thing is though, it’s totally “normal” to me.

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