Saturday, October 13, 2012

Autism's Theory of Relativity

Tonight, a dusky autumn evening, I got out of the car and walked toward the house, pausing as the sight of my breath in the air made me again realize that summer has drawn to a close and we are about to enter the dark, wet, Dutch winter.

I opened the door and Maya came, bungling down the stairs, "is Daddy home?" which is her usual first question as someone enters the house, but then when she saw me she ran downstairs and threw her arms around me with wild abandon.  I went upstairs to change and she followed, asking me her usual second question, "what's for dinner?" and I teased her, telling her we are having frogs and broccoli, she laughed and said, mmmmmm dis-gust-ing, and we both exploded in laughter and repeated the dialogue several times, giggling like crazy.  

That's my happy girl.  

I am so grateful that she is happy, that her nature is happy.

It doesn't make her challenges less challenging.  It doesn't make her problems less severe.  It doesn't make my fears or worries vanish.  But, it does make it all just a little easier to take.

There is a comfort in knowing that despite it all, my girl is happy in her own skin, that her problems are not so severe that they impact her ability to be happy and to feel good.

It's definitely a port in a storm.

I am a big believer that most things in life are relative and that is especially true with autism. There is so much talk about division and polarization in the autism community and it's true that there is.  But generally, there is a lot of division and polarization in life these days, whether you are talking about autism, politics or just about any societal issue, there is division, polarization, hostility.  Those in the middle ground get usurped and overshadowed by the extremists.  It's the nature of the beast and a reality of life today.

I see and read about many other parents whose kids are not happy, who are so trapped by their autism and their developmental issues that they have no release.  Maya who speaks very well in two languages also has trouble expressing herself at times, it's a huge challenge for her to tell me any real details about her day.  They come out in weird little snippets, like the puzzles she so dearly loves, and I spend my days and nights trying to find the pieces to fit together.

But there's a difference between challenges and being trapped.

It's tough to be happy when expressing yourself is such a huge challenge, when you feel no one understands you.  I give so much credit to parents who deal with that and much more every single day and who never give up on their kids, who never stop demanding the best for them, who never stop searching for answers even when there is very little reciprocity of that love from their kids, because they have trouble expressing themselves or are so locked up inside that the only thing which comes out of them is frustration and rage.

A lot of people I know, readers of this blog, often comment to me on how positive I am despite Maya's challenges, on how I celebrate her milestones while being honest about her challenges.  I do believe that in a lot of things, it's not so much about what is happening, but how you choose to deal with it, so yes, part of that is me, my unwillingness to give up where Maya is concerned, to keep encouraging her, to help her get to where ever 'there' is for her.

I put her happiness above her milestones, definitely.

Look, Maya's development is behind, her autism impacts her in a very real way, it stands in the way of her development, it slows her down.  There are many things she simply cannot do.   I don't know if she will ever catch up.  Those are very real concerns,  especially as she is on the cusp of being 9, getting beyond the age of socially acceptable toddler and pre-school adorableness, where a lack of independence is expected and even endearing. She is in middle childhood, but she is already pre-pubescent, yet she cannot tie her shoe, cannot dial a telephone, for all practical purposes she cannot read.  Yes, she is developing, but I don't know whether it will be enough.  I don't know where Maya's development will end up, what she will and won't be able to do.  As time moves on it seems that the hope that she will be able to be completely independent and not impaired seems less possible but I really don't know.

Because when it comes down to autism, I question all the time how much I really know?  I know a lot of facts and statistics and downright scary stuff.   I know my child and I am convinced that pushing her harder will not only not speed up her development but might impact her ability to be happy.  I see that therapy can help but I fear that trying everything under the sun, pushing it all on her will just make her confused and won't really move her down the field anyway.

I really don't know.  But one thing I do know is that no matter where her life and her development take her, wherever Maya's brand of there is, her being happy will serve her well in life.

Just this minute, right now, Maya just walked into the room to say good morning, holding one of her doll's pillows in her hands.  She kissed my arm caressed my face, the same way I do hers and handed me the pillow and ran back into her own room.  I turned the pillow over and it said  -  Love.

I don't know much but I know that.


  1. I think that we all need to take one small step at a time. I am not a fan of pushing harder to speed up development... I believe that in order to set the foundations for further development we actually need to slow down. I have seen the progress with my own son (who is very different than Maya. He is non verbal with many challenges... and yes, he is a happy boy). Because I have slowed down and been very mindful about his development and how I can help him.... his progress has sped up. Sure he is still Waaaay behind his peers but that's okay. Sorry, I am waffling... hope you can follow all this! :)

  2. I know exactly what you mean, we slowed down and sped up Maya's development too. Thanks for reading, I love your blog as well!