Monday, July 23, 2012

Recognizing it

This is our first official weekend of summer vacation, for the next six weeks Maya doesn´t have school.  On top of that as I´ve been obsessively blogging the last few days about, our au pair Violah has returned home to South Africa.  In August our new au pair will come and Maya is now excited about that.  

Despite all the change, Maya is coping okay so far.  On Friday after Violah left I was teary, the house was eerily quiet and I had that feeling of emptiness at saying goodbye to someone who has not only lived in our house, taken care of Maya and helped me keep the house in some semblance of order, but I feel like we lost a member of our family.  Maybe it is because it is just the three of us, being a small family, maybe if you have a house full of ten people you don´t miss one as much.

I remember having the same feelings in the days after Rodrigo left.   

Still, Maya got really tired of me asking her how she was doing all the time on Friday, so I am not asking anymore.  And although she was very quiet on Friday, all weekend she has been largely her regular self.  She´s hyper sensitive about certain things, like yesterday afternoon when I ripped Leo for wearing a shirt which looked like it had been rolled up in a ball for days, she got very upset, mistaking my ribbings for anger but this is largely regular for her.  This kind of thing can also happen on a run of the mill Tuesday.

Although she is not talking about it, I can see it is on her mind.   Leo´s mom bought her a stuffed polar bear on Saturday and Maya named her Violah, I asked her why she named her that and she said that our Violah is gone and I still wanted to have a Violah close by.  

It took every fiber of my being not to burst out in tears.  

When you have a child on the autistic spectrum, you worry about how they are going to experience and handle big changes in their lives.  You worry that the enormity of the change is going to set them in a tailspin so great that your life will be one giant meltdown with your child a gangly mess of emotions and frustrations.

You worry even more that it won´t register to them, that their challenges in recognizing cues will stand in the way, that the departure of a loved one will just register as a regular old Tuesday instead of a significant moment in their lives.

That is also autism.  Although more and more I believe it is not because autistic people don´t feel these things, but their communication challenges make it tough for them to express their emotions and for some, the change is so impactful, so hurtful and confusing that an autistic person turns to comforting techniques, like scripting, organizing toys or other materials, repetitive movements like arm flapping or rocking back and forth or frustration and meltdowns.

All things considered I feel grateful that Maya is able to express her feelings and process them and I am also glad to see that although she is sad and it is on her mind, it is not so debilitating that it sets her back.  

She is growing and maturing.  And the truth of the matter is that I can do all the preparation, preventive actions, thinking, over-thinking and nurturing but I cannot take away sadness in her life, I cannot take away the fact that some people that you love leave your life.  I cannot take away disappointment, sadness or sorrow.  I cannot, as a good friend told me recently, `throw down pillows´ all around her to keep her safe and insulated.  

To be perfectly honest, I wouldn´t want Maya´s life to be like that even if it could be. It is our sorrows which help to remind us how beautiful, warm and fulfilling pleasure and happiness are.  Sorrow and disappointment teach us how to be grateful for all the wonderful things that there are in life.  I am a firm believer that you cannot experience wonder and joy without a little pain and sorrow.  

Otherwise how do you recognize it?

I want my daughter to be able to deal with disappointment and sadness without it breaking her, without her losing herself in it, her inability to deal with it causing her to make self destructive decisions.  I want, when she falls down, for her to cry a little, blow on her wounds, apply some salve which will help them heal and then get up, dust herself off and keep on soaring.

Keep on soaring.  Sounds good to me.

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