Monday, November 5, 2012

Acceptance isn't Apathy

This year at home we have been working on Maya gaining more independence with everyday tasks. For the past month or two she has been getting her own drinks and snacks and now makes her own sandwiches and the other day for the first time made her own bowl of cereal.  She even carried it on a tray so as not to spill it.  She now brushes her own teeth and washes herself.  She's about halfway there on tying her own shoelaces, but it's tough for her with her fine motor skills delay.  Still, she gets her shoes on and ties the knot and we do the rest.  

These may seem like no-big-deal kind of things, not even worth writing about, but for Maya they are huge, not just the tasks themselves but the fact that she does these small things from start to finish.  Concentration is a huge issue for Maya, but slowly and with a lot of patience, she is making progress.  

Maya goes to a special school for kids with severe learning difficulties.  She is one of the higher functioning kids in the school but because of her concentration, her issues with time pressures and her need for extra attention and consistency, it is the right environment for her, even though Maya is higher functioning and has more capabilities than many of the kids in her school.  

Leo and I have gone back and forth on the idea of putting Maya in additional therapy outside of what she gets at school.  Maya has a one-on-one aide 3 mornings per week and she goes to physical therapy and speech therapy.  We've thought about ABA many times.  ABA is relatively new in the Netherlands but we've considered it ever since it has been available.   Every time though we back away from it, not because we don't agree with the therapy, but because we seem to always come back to the place where we feel that slowing down is the best way to speed up Maya's development.  Putting pressure on her through even longer days and more schooling may not be the best thing for her.  Maya is a child who needs a lot of down time, she needs to be able to be herself, in all her glory without constant correction and re-channeling her nature.  

Still there is a certain guilt that comes with the territory, that says I should be doing more for her.  

I want to be that mother lion.  The one who keeps fighting and never giving up, trying everything in her path to help her daughter.  

In the world of autism you are always doing that dance where you make a decision and question whether it is the right one, turn it over and over in your mind while you are cleaning up the house, cooking dinner or not fully paying attention in a meeting.  It's par for the course.  

There is no escaping the second guessing.  

A lot of our journey with autism has had to do with coming to grips with acceptance.  Acceptance that Maya is different, acceptance that she cannot do what others do, acceptance that she doesn't understand a lot of things, acceptance that she has loads of challenges, acceptance that *this* might be as far as she gets.  I accept that I don't know what the future holds for her, and I accept that it scares me.  

Mostly I accept my daughter, for who and what she is today, right now, this minute.  

All the progress that Maya has made since her diagnosis, since her days of constant meltdowns and wetting her pants, from the days that Maya would strip naked just to have some kind of control over her own life, that progress has been made through acceptance. Consistency through words and deeds that she is okay just the way she is, that she is her very best version of herself, right here and right now.   Sure, I sometimes question whether or not Maya might benefit from other therapies, maybe it would help her to develop more, faster.  Every day Maya has to go against her own nature, to venture out into the world.  Every time she looks someone in the eye, every time she tries something new, every time she asks another child what they would like to do, every time she handles a chink in her routine, she is going against her own nature.  And I get that is necessary if she is going to develop.  

I think, at least with Maya,  there is a fine line between stimulating her development and giving her the message that she is somehow not okay exactly how she is.   This is why we opt for quiet weekends and not a lot of extra curriculars, and we are not enrolling her in therapy outside of what she gets at school.  While I can understand trying new therapies and new things on a continual basis might be the right thing for some families, with my heart and soul I don't believe it is the right thing for our girl or our family.  And if I look at her, at 9, she is a confident child, she thinks well of herself.  

That has to count for something right?

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