Monday, February 20, 2012

The Same Bag of Lollipops

Lately several friends of mine have been going through very difficult times with their own kids.  Not all of their kids are autistic, they are dealing with a variety of different things.  I have tried to be there for them, in the same way that they or other parents have reached out to me in my times of need.  I am not able to make it better but I do listen, I try to use whatever wisdom I have managed to pick up along the way in my own autism journey, and I hope that if nothing else, the simple act of listening and a word or two of encouragement will help my friends to know that they are not alone.

I know that has helped me immensely during this journey.

And I am not one of those mothers that think that because my daughter is on the autism spectrum that I have it worse than other parents.  Because let's face it, when your kid has problems, no matter what they are, they are the worst problems in the world.

And any other parent who has worries, whether they are similar or different worry just as much.  When I listen to my friends whose kids are also struggling I see that while our worries are different, they are largely the same, only details differ.

In the end it doesn't really doesn't matter whether it is physical, cognitive, emotional, social or any other issue, whether your kid is diagnosed with something or whether the family is going through divorce.  Any time there is a problem, we parents go into worry mode.  Some of us live in worry mode, but still, that pain, that knot in the pit of your stomach, none of us as parents escape it.

At the moment our biggest worry is Maya's academic abilities.  Yes, she is making progress, although it is measured in nano-millimeters, barely distinguishable to the naked eye.  Sometimes I even wonder if the microscope we use to measure these small leaps is a figment of our imaginations.  I spend my days and nights wondering and worrying if there will be some time in her young life when a light switch will be turned on and she will just start sprinting and playing a big catch up game, maybe not to peer level, but to somewhere close.  On days when I let it in, I let my worst fears come to the surface, that this mythical light will never come on and my beautiful, sweet, funny girl will remain more or less as she is, physically growing but with serious deficits, deficits which will keep her childlike, unable to mature into an adult and live independently.

And yes, this is a big worry, it is a huge worry, in fact it is so huge I barely let myself think about it.  I take comfort in what Maya's teaching team say to me, that she is still very young and that we don't know yet what her full potential is.  Maya is not a child who responds well to pressure of any sort and we were told early on that the best thing we could do for Maya is not to pressure her.

And we use her happiness as our thermometer.  Maya is a happy child, she does make progress, we keep doing what we are doing.

And of course I always worry that we are not doing enough.  That we should be pushing more and shuffling her from therapy to therapy, enrolling her in extra curricular activities and not focusing so much that she has enough downtime not to get overstimulated, but instead we should be gently pushing her more to do what other kids are doing, be putting her in the real world more instead of protecting her.

But if your worries are not in the cognitive vain, they are no less bothersome, no less potentially life influencing or debilitating.

The other day I talked to a friend of mine whose son is having a really rough time.  He is on the autism spectrum and is excelling academically, being gifted in math and reading but socially things are really rough for him.  He is enormously frustrated and angry and uncommunicative a lot of the time and his parents are having a really tough time trying to understand how to help him.

Of course my friends' biggest worry is that she doesn't know how to help her son.  They are trying many things but so far they are still in the same place, constantly questioning if they are doing the right things, should they be doing something different, should they take him out of a mainstream environment to where there is more attention for social development and a less pressured social environment.

My friend said to me that she would do anything just to see her son happy and that dealing with an unhappy child is the most difficult thing, she is at a loss at how to help her child.  And she said to me that at this point she would trade a little of his academic success to see him happier.    And at the same time she was saying this to me I was thinking,  well at least your child can read you a story and is learning how to multiply.

So it doesn't really matter what flavor it comes in, worry is worry.  We should all remember to breathe and remember our child's gifts, remember what they do to make us laugh, remember to love them above all else. Everything may work itself out or it may be a long hard road.  As parents we don't know what lies at the end of that road will be.

But whatever it is we should remember to temper our worry with embracing each of our child's unique and beautiful gifts.

1 comment:

  1. I don't usually post comments, but I really liked your realism. To quote an overused phrase - it is what it is - you are a good mom.