Thursday, 1 September 2016

Parenting When Autism Is Your "Normal" and Neurotypical Is Not

It's a novel experience, having a child you don't have to constantly worry about.  A strange and marvelous realization, a little bit awe-filled in fact, that the things you do worry about are, quite simply put, extremely normal things.

They might fall down or off something, they might have a quarrel or a fight with another child, they might have a tantrum.  If they do, no harm done, they'll manage, they'll be ok.   When it comes to my neuro-typical son, the worry is barely there, showing me the sort of mother I might have been had I had two such children.

For example,I took my younger son, C, to a huge "picnic" in the city last Sunday.  Complete with blaring music, loud crowds, numerous bouncy castles, and a general atmosphere of friendly, boisterous chaos.  It was all a bit of an assault of my introvert soul but I managed because C was in heaven.  For four hours straight, he ran, shrieked 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 on the way home was "So fun Mommy!  So fun!"

And I smiled a slightly bewildered smile and thought "How very interesting!  He enjoyed himself!"

It was another novel experience for me.

I have tried this before with my older son, W, not understanding really why every time we went out to things I thought he would enjoy, we almost always both left in tears.  I would end up sweaty and exhausted from trying, trying so damn hard, to avoid a meltdown, to avoid stress, to avoid other playing children because something in me knew that in order to maintain a level of calm we have to avoid his peers for the most part.  I couldn't sit on the grass and relax, I had to follow one step behind, to make sure everything was always ok.  Because it could change in a second.  I knew this.  I just didn't really know why.

W could be excited at the thought of going somewhere and then we would arrive and reality would quickly set in.  I knew at any point, the screaming could start, and then there would be me, trying to hold his hands to keep him from lashing out, and always people, walking by and tutting their disapproval.  The unpredictability of this was emotionally exhausting.

Going out anywhere "fun" was difficult, anywhere with noise and color was unpredictable.  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 things were filled with screams and the sound of a little head banging again and again into the back of the car seat.  We became "escape artists".  I can't say how many events and parties we had to leave quickly, 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 a 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 such a strong sense of impending doom.  Danger. Danger.  Go back.  Get him out!  Get him home!  Make sure he's safe.

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 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 so he wasn't allowed to play with the toys he wanted to play with all day.  He hits other children.  He repeats himself all the time!  He always needs to know what will happen next!"  *exasperated sigh*

I couldn't bear it.  I would scoop him up and take him home and as I had since the moment I laid eyes on him, delight in his quirks, his funny behavior, all the things that made him so unique.

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 my four year old was sick when he came home.  Then we would put on quiet cartoon and he would lay on the couch recovering for the rest of the afternoon.

This was my normal.  I could only see that they couldn't see he was just beautiful.  Yes, different, even I acknowledged that, but so bright!  So engaging!  So imaginative!  The light of my life.

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".  Amazing how a word can make all the difference sometimes.  When I was told "there is something wrong with your son", my determination to protect him would increase and my defenses would go up.  I hated those words.  Something wrong.  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 (C was 3 and W was 5 at that point) that I began to actually see how a neuro-typical child behaves.  I kept exclaiming in wonder and mild confusion over C.  "Look, he just...plays!" as though that were the unusual thing.

I still catch myself doing that, 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 is actually just happy!  He runs in!  He greets people!  I don't understand it!"  Or "Funny how he can just play with another kid!  How interesting!  Do you see that?!"  I am puzzled and enthralled by the things most parents would find normal behavior.

C is also a special needs child and has his own challenges but they are so easily dealt with.  So very, very normal.

My perception of "normal" though remains somewhat distorted.  It's funny, the things that shape our understanding of what constitutes normal.

I think it's good though.  In my more confident moments, I think it's really good in fact.  My "normal" is a pretty fluid thing.  I have a mind that adapts easily when it comes to the needs of those I love and to challenges.  I will read every book, I will learn everything there is to know and become an expert. That's what I do.  I did it regarding adoption and I'll do it again now.

Because my normal as a parent is not yours and yours is not mine.  In fact 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.



9 comments:

  1. You are tremendously positive Colleen.I hope things settle down as he grows up.

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    1. Thanks Indu! In some ways they have and in some ways not. I was just reflecting o how it was for us 3 years ago when we didn't know what was going on because now C has started pre-school and the difference is so great! :D

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  2. This was an amazing read, Colleen. I am reaching out my hands to hold yours tightly in mine. In a way, reading this account is so humbling. Hugs, my friend.

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    1. Thank you so much dear friend! Hugs back.

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  3. This was an amazing read, Colleen. I am reaching out my hands to hold yours tightly in mine. In a way, reading this account is so humbling. Hugs, my friend.

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  4. I am so moved by this account, Colleen. Thank you to Rachna for sharing this. We never really know what it's like, the other parent's normal, do we? And to be doing both, the way you do, must be so challenging yet gratifying. I admire you for putting it all down this way.

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    1. Thank you very much Shailaja. So true, I know I am in the same position as well, not truly understanding sometimes what other people with other challenges go through! :) But I love to learn so that's a start. Thank you for your visit!

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  5. I'm left speechless, Colleen. This is so beautiful. So, instead of diluting your lovely post with my words, I'll just highlight the words I found most profound.

    ...different has never been equatable with wrong.

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  6. Er det ikke rart at verden må ha en diagnose, eller forklaring om du vil, før de kan akseptere et barns "unormale" oppførsel. Men du.... Du aksepterer forskjellen uten spørsmål, og griper an et barns hverdag med forståelse, kjærlighet og tillit... Det er sånn alle burde gjøre, vi har alle noe å lære av deg Colleen! Jeg bøyer meg i støvet og tenker at W er den heldigste gutten i verden som fant nettopp dere som foreldre! ❤
    Klem fra Merete

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