Saturday, January 21, 2012

Would you change your child if you could?

This is my blog response to a question posed by  Autism Daddy's  post  .  As usual, I am not really black and white standing on one side or another.  I'm likely to be in agreement with some of you  on some areas of this post, and not on others.  I'd also like to add, that this is more of a response to the global autism community where this question is often posed and hotly debated, rather than to Autism Daddy personally.  I don't really follow his blog, or know or conversate with him, so I really have no opinion of him one way or another, or his views.  I just thought that since his blog was the one that brought my attention to this issue today that I ought to refer to it as where I'm starting from, but I'm not necessarily going to address those posts of his point by point.  I don't think that there is 'right' or 'wrong' in this situation.  That is one thing I want to make clear from the get go and I will not respond to vitriol based comments that are left after this post as if there is only one way to view this very complicated issue.  If only life were that simple.

So, would I change my autistic children for the world? How about myself? What would this mean exactly when people say this?  I'll be the first to admit I have lots of trouble seeing hyperboles and general concepts.  Oops, there goes my autism.  I can't imagine something that just isn't and never will be.  There can't be any change in my or my son's autism status.  There is no cure, or way to be changed, so for me to think about it, well... I just draw a blank.   It's illogical, and impossible.

However, what do I think about erasing/easing the struggles my autistic children face everyday?  That, as I think any parent would answer, would be a resounding Yes!  Yes, I would love to ease my ASD kid's struggles, and My NT child's as well.  Afterall, that's the whole notion behind the idea of 'changing our child' isn't it?  For most of us, it isn't about the shallow concept of not getting what we anticipated.  Although, I will say that that is part of it for some parents of special needs kids.  Most of us, it is all about wanting our kids to be happy, and healthy and have the overall ability to pursue what they want in life without big monstrous obstacles in their way.  For many, it's the ability to not have to live in a house that's a fortress, always on lockdown, alarms set, for the next elopement.  Or, it's about not scrubbing poop off the walls and a oblivious child at 3 AM.  Or, maybe it's about not having to worry about your 6 foot adult child becoming suddenly violent in a fit of sensory overwhelm and living with the fear that maybe you might be seriously hurt next time.  Maybe, it's about not wanting to see your daughter sit alone at lunch knowing she wants desperately to join in with the group of girls at the next table, but doesn't have a clue as to how to go about it.  Maybe, it's about not worrying over who will care for your autistic child when you are gone, and if they'll be taken care of at all.  Those are all very common worries when dealing with an autistic loved one.

I want to be clear that I understand those concerns and I have those, too, in my own life with the broad spectrum of autism that is in our household.  I also understand that there are some people that are better suited for being special needs parents.  Not because some people are better than others as people, but because we all have different things we are good at and things that seem like a big deal to one person may not be as much to another.  This isn't about character as much as it's about personality.  Some parents of ASD kids need extra support.  I wonder what poeple's opinions would be of how autism effects their lives if the support they needed was there?  What if, there were ways that eased some of the issues autism poses?  What would people's opinion on it be then?

I wonder this, because I wonder if it's possible that in the future, we can have these resources readily available.  What if, when a person was diagnosed there were the supports in place to help with the struggles that they have everyday?  A team of people specializing in what your child might need.  Occupational therapists, and Speech paths, as well as physical therapists.  What if there were optimal schooling available, instead of this half assed educational system we have now that doesn't really accommodate anyone?  There could be ideas on how to integrate the sensory system for better sleep, less pooptastrophes, less violent overwhelm.  There could be a communication system, even if it isn't verbal.  There could be social skill training and better acceptance out in the community for autistics.  Respite that was available not just to the wealthy.

I am appalled that as of now, most usually there are none of those things offered, not explained to parents when their child is diagnosed with autism.  Usually, there is meds offered for 'behaviors' but nothing in the way of how to help the person with autism, or the family live a functional life.  Some people research and figure it out for themselves if they have the ability to do so.  Others, have the resources to buy the help they need.  I am appalled that there are few educational supports that are reliable for children in a country like ours.  There is no reason that parents should be as afraid as I know most of you out there reading this are, to send our kids to school everyday.  This isn't the fault of autism.  This is about stepping up and taking care of each other as humans.  Disability will always be a part of society and what it means to be a part of the human race.  There is no changing it.  We must learn to advocate and have compassion for others that are different from us.  I don't want other's pity.  Pity helps no one.  I want understanding.  I want equality, not tolerance.  I don't want my boys 'tolerated'.  No.  I want them valued. I think that in the future with enough advocacy we can possibly achieve this goal.  Maybe, with some of the deficits addressed with autism there might be more room to see the potential.