Wednesday, November 28, 2012

Not Fair

Most of the time I try to use this blog as a way deal with the ups and downs of having a child on the autistic spectrum.  I try to look for the positive, I try to process our ups and downs in a positive way, without getting too crunchy-Granola, because really, I couldn't pull that off even if I wanted to, and trust, I don't want to.

I focus on my daughter, on her truth, her honesty, her joy and try as much as I can to be realistic, to be practical.

Sometimes though, a girl's gotta wallow a little.  This is one of those times.

We've not had a major event or upheaval, no big setback.  Things are humming along quite well actually.

Last weekend my office had their annual Sinterklaas party.  I am not going to get into the details of the holiday just to say that it is a beloved Dutch tradition and one that is fully embraced by our Maya.  At 9 she still believes, largely because it took her until about age 7 to gain any real understanding of the tradition at all.

My office always does a really nice party for the kids.  They really try to make each year special and depart from the traditional type of party.  Last year for the first time Maya was able to participate by talking with Sinterklaas and they made all types of accommodation for her.  For the Dutch, who raise conformity to an art form, this is a gigantic thing.   This year we had the same people and they remembered Maya and they were also so kind and sweet to her.

But there is always something about these types of events, whether it be this holiday or others, birthday parties or other events where Maya is surrounded by typical kids, that makes me sad, sad that everyday things like this that are supposed to be nothing but fun, but are challenging for her.  Sad that so very little in her life is easy.  Sad that she has to work so very hard all the time, sad that everyday things are a struggle.  Sad that she just doesn't float through life and that developmental milestones aren't on auto pilot, that they just happen whether you actively pursue them or not.

In our world of autism, pursuing a milestone in no way means you will achieve it.

We are still struggling with reading.  I don't pressure her because I have seen how my pushing her, even gently causes her to retreat.  Last night before bed, I asked her about her reading, about whether she knew how.  I know she knows a little, but she always answers no.  When I asked her, and by asking her, I gently prodded and pulled out one word answers out of her while she averted her eyes to the floor and finally it came to this.

Reading is hard mom.   

Although I don't talk that much about it, I am scared for her.  Scared that this might be all there is.  Scared that she may end up with choices like supporting herself by cleaning the tram or subway cars or the streets like I see other mentally challenged adults do.  Don't get me wrong, I am not looking down at all at doing that for a living.  It's an honest day's work and if that is where your abilities bring you, so be it.

Here's the thing, that no matter how many years I am on this autistic journey, no matter how much time passes, no matter how much I accept, the thing that makes me go into mourning all over again is when in small moment like a Sinterklaas party, that this is not what I dreamed of when I had a child.

I didn't want this for her.  I wanted easy for her, I wanted achievements in whatever form they took, I wanted the whole world of possibilities open to her for the taking.  I wanted her only limitations to be her own desires.  Because if there is such a thing as karma, my little girl deserves to breeze through life, without a care in the world.

But this is not reality.  I know our reality is different.  In our reality I am not as sure where we will end up, I am not sure about anything, except that I love my daughter and I would do anything to help her, to help her through those challenging moments and to find those things in her life that will make her heart and soul soar.  Our reality is acceptance. And I do accept her, all of her, even what I don't know yet, even if she remains exactly where she is right now.

Even if she never learns to read.

Even if grows up illiterate.

Even if working or taking care of herself is not an option.

I will accept her no matter what.

Doesn't mean though I can't have a bad day over it once in a while.

So, that's today.  Tomorrow will be better.

No comments:

Post a Comment