Tuesday, January 17, 2012

Sugar Coated

I haven't been writing so much lately.  Normally ideas for posts just kind of come to me and to be honest, I forget more topics than I actually post about and most of the time I have one or two completed posts ready to go but just space out the posting to let them be highlighted as the lead post for a couple of days.  But lately, I have wanted to write and I start a couple of sentences and give up, feeling what I am writing doesn't have much point.  Good thing this is virtual writing or my garbage can would be overflowing with crumpled up bits of paper.

Not sure why I am having a hard time putting proverbial pen to paper, anyone who knows me or has ever read this blog or the very fact that I have a blog means that I have lots to say.

I also think that there has been a lot happening in our lives as of late, lots of weird out-of-nowhere type crap.  Just a few of these little nuggets are that we were exposed to tuberculosis and had to be tested and wait out the results, we had this carbon monoxide scare at our house, a wind storm did some damage to our roof and we have been busy jumping through the hoops of the insurance company to process our claim so we can get it fixed, the holidays, and with that my overwhelming desire to unplug myself and watch loads of movies and tv.

Plus I must admit I have been thinking a lot about a blog post I read a couple of weeks back.  It was from the mother of an autistic child who clearly is dealing with a lot.  Her child is severely autistic and every day is just a struggle to make it through.  She spends her day trying to soothe and understand her non-verbal child, her day being marked from one tantrum to the next and break time comes when she has to do stuff like clean feces off the walls.

Her post was about the neurodiversity movement (is it a movement?) which says that we should stop trying to cure autism and trying to teach autistics adjust to the neurotypical world, but instead the world should become more accepting that there are some people whose brains are different than others and instead of curing we should be seeking to understand and find each person's innate and special gifts.  That we should be embracing autism rather than trying to curb its effects.

Now I can imagine this sounds like a bunch of BS to this mom and the mom of any severely autistic child.  Autism has locked up her child within himself, making him unable to communicate and unable for her or anyone else to know what or how much he understands.  There is no way she can embrace autism or want for anything other than some kind of cure.  And this mother, who clearly has an overwhelming amount of challenges in her day to day life and who was blowing off steam in her blog post also said that she is tired hearing parents who try and put a positive spin on autism.

As much as I sympathize with this mother or anyone dealing with a situation like this, her post stayed with me and still does.  Because I am one of those mothers who does try as much as possible to find the positive and to put a sunny spin onto our autism experience as much as I can.

So, if this mom were a regular reader of my blog, I am pretty sure my posts would piss her off and she probably wouldn't be a regular reader due to the aforementioned pissing off.

And to be honest I have had other comments from other autistic parents, parents whose kids are really struggling say that they also sometimes resent those of us who seem to live a charmed life with autism.

And obviously my situation is nothing like this woman's.  Maya has problems, sure, but she communicates, yes at times she has problems expressing herself and finds it hard to tell some things and independence at this stage is surely not a given.  She has academic challenges which are mostly responsible for the permanent dark circles under my eyes.    And although Maya I am sure has some similar characteristics to this woman's child and others who are severely autistic, I know that what I am dealing with is in a whole other ball park than what these parents cope with on a day to day basis.

And I am not going to sit here and pretend that I know what it is like to raise a child who is severely autistic.  How hard it must be when the worry, sorrow and struggle to just get through every day is a question mark and where a child struggles more than triumphs or is so locked up within him or herself that there is no way to express themselves other than frustration and aggression.  To see your child in such pain must be excruciating as a parent.  I get that it is hard to find joy or find something positive in autism.  And I get that those of us bursting into autism song might be a source of irritation.

Still though, I have not been able to get this post out of my mind.  Am I doing autism a disservice through my blog?  Part of the reason I blog about autism is to connect with other parents of autistic children, am I in fact putting off other autistic parents?

Are my child's problems really less than everyone else, is she making such astounding progress?  Are my coping skills just that much better than others?  I am certainly not a warm, fuzzy, new agey, positive person who finds a positive spin on everything.  I am one of the world's biggest cynics and look at the world largely that way.  Why is it though that I am so unlike myself when it comes to autism and my daughter?

I think, more than anything else what fuels our disposition is our childrens' own personal state of being dictates how we look at autism.  If your kids are struggling or fundamentally unhappy, frustrated, not progressing or standing still in terms of development, then it is nearly impossible to put a positive spin on things.  Pile on top of that services which are not existent, not enough or not compassionate enough toward your child or what you are going through as a parent and it is easy to see why it is so tough to look for the joy.

My child is, despite her challenges, or maybe even because of them,  a joyful child.  She is happy, she will nearly always choose to be happy and she hates being sad or angry.  She does get sad and angry but her natural order of things is happy.  She wakes up happy and goes to sleep happy.  My daughter is the kind of kid who tells you she loves you the second she wakes up, the type who will grab your hand and kiss it for no reason, the type who will comfort another child who is crying and try to make them laugh.  She is the type of child who can invent an entire world with her stuffed animals or her Little Pet Shops and the type of child who will imitate funny lines in movies with pitch perfect tone to make us laugh or who will fling herself into my arms with reckless abandon when she is showing us something new that she can do.  My daughter is a child who thinks ants crawling on a sidewalk are cute.

Our Maya is a sugar coated wonder.  She's the human equivalent of a tootsie pop, a candy shell with a gooey inside.  I love that about her.

And it's precisely why I have ended up on the sunnier side of autism, because I live there with my beautiful, amazing, funny, happy daughter.


  1. I feel bad a lot of the time that my view on autism goes more towards the negative. I agree with you, though, it depends on how it affects your kid's disposition. I wish K was a happy autism kid. She's not. It kills me. I don't even care so much about the autism, I just don't want her to hate life. All of our journeys are so individual. You def aren't doing a disservice. Al sides deserve to be heard.

    1. Jen, the funny thing about me is that I am a person who naturally gravitates toward the negative, I am a total cynic but because my kid is joyful, I do think it totally makes the difference how you are. I can't imagine if Maya were not how I would be. I think despite Katie's unhappiness you hold together well and I love that you are so honest about putting your fears out there.