The Paradox

That message is so important, but the paradox rises in this way - there are many who would say that speaking of the struggles in raising an autistic child and the more challenging aspects of autism is to demonize it.  They say that speaking of it - making autism into a monster - is incompatible with acceptance and love.

As a parent, I can see it, but I can't.  You see, while I know that there are a select few parents out there who are different from myself, my belief is that being a parent imparts you with acceptance and love for your child.  Thus, I believe parents can easily talk about the negatives and separate them from everything that makes their child wonderful, special, and unique.

That's not to say that the positivity and acceptance and struggle don't all stem from the same root cause, but as a parent I can accept my son's autism - I can even find the beauty in all of the little things that others may see as "quirky", but that I see as endearing - while I also acknowledge that there are aspects to his autism that I wish did not make his life so difficult for him.  To deny his challenges - to focus solely on the strengths - would be to deny Jack the struggle he faces and acknowledgement for the hard work he's done to overcome some of the challenges along the way.  Denying his challenges also takes away from him - he who does not yet have the voice to advocate for himself - the seriousness of his struggle and his need for support.

It would also be denying a part of who he is.  Jack - like all of the rest of us - is a mixture of strengths and weaknesses.  Some of his weaknesses may be more apparent to the naked eye than mine, but I assure you that mine are there.  If you look within yourself, you might see your own as well.

I am clumsy.  I am scatterbrained.  I am a woefully bad dresser and I like things that most people consider "nerdy".  I let people walk all over me.  I have horrible anxiety.

Each of these traits might be considered a drawback of the neurological state and system that is uniquely my own.  The neurology of Jeanie has some negatives that make life a little more difficult for the person who possesses them.

You might say that anxiety and clumsiness are separate from the neurology of Jeanie, that they aren't traits that make my neurology, but I would say you are wrong.  You see, our neurology is more that the sum of various traits...it's who we were born to be.  There are many "categories" my neurology could fall within - neurotypical, anxiety disorder, possibly even dyspraxia - but my neurology is unique to me within this broader phenotype.  You see, from birth my brain was wired in such a way as to make me prone to anxiety and clumsiness.  This isn't something that I just picked up - like a virus - somewhere.  Rather, my anxiety has always been a part of me.  My clumsiness was there before I could even walk enough to trip on things - before it could truly manifest itself.  Same with my anxiety.  I was scatterbrained before I had the words to skip around on.

In other words, it's who I am, for better or worse.  The people who love me don't love me less for wishing that my anxiety wasn't something that affected me so.  Anxiety is a part of who I am and a part of what makes me wonderfully quirky, but I'm sure that my husband would argue that he wishes that it didn't get to me so much at times.

And so it is with Jack.

For as much as I love Jack, as much as I accept him, as much as I think that his uniqueness is something to be celebrated, there are aspects of his autism that I wish I could take away without stripping him of his very humanity.  Like me, he suffers from anxiety - though his is ten-times worse.  He struggles to communicate.  He struggles to understand the world and what is going on around him.  He struggles to reason things out.  He has cognitive delays.  He has motor delays.  He has feeding issues.  His sensory processing challenges make it difficult for him to enjoy some of life's little pleasures.

As a parent, I wish he did not struggle so because I love him, not because I hate autism.  As a parent, it has to be okay that I wish he wasn't as challenged.  It's not because I don't see him as less, but because he is my entire world.  He is my heart walking around outside of my chest.  When I see him hurt, feel frustrated, or discouraged, I feel those emotions magnified within me because he is my child.

This isn't an acceptance thing.  This isn't a neurodiversity thing.  This is a parenting thing.

If Jack ever one day looks back at what I've written - about some of the struggles we have faced as a family - and asks me if I hate autism, I'll tell him that I do not, but I'll also tell him that life doesn't so easily break down into such nice, neat categories.  If he isn't a parent, I will explain that this is just part of being a parent.  As parents, we always wish we could strip our children of the things that cause them to struggle.  It is part of that undying love we have for our children, and it is truly something that only a fellow parent can understand.

And yet, when we cannot remove our children's challenges, it causes us great pain.  To deny that pain would also be denying the great love we have for our kids, because their struggles would not affect us so if not for our intense love for them.

How do we reconcile this?  How do we strike a balance between acceptance and struggle?

I'm not sure we can.  Instead, what we can do is to muddle through each day and experiment as we go.  There will be days in which the acceptance wins out, but there will be days in which we cry into our tear-stained pillows because the struggles just get to be too much for our children.  I think that as long as we strive to stay in the light - as long as we try to let the positive win out more than not - that we are doing okay.  The tear-stained days have to be okay, too.  If they didn't get to us from time-to-time, we wouldn't be parents.

Both represent love.  That's the message we should spread.  Not merely acceptance.  Not just neurodiversity.  Love.  If we go forth each day acting in love for our children, then we won't be led too far astray.