Saturday, July 7, 2012

A Rare Glimpse: My Thoughts on Autism and God...

I recently heard the argument “why would our God want to give a child a disability like this?” in reference to the many who say things like “God doesn’t give us more than we can handle” and “God needed to place another child with Autism on this planet so he chose me” and an apparent favorite “it is a gift from God.”  I have to say, I kind of agree.

Before anyone fries me for that let me continue.  Everyone is welcome on my page regardless of your religion and I have no intentions of taking any kind of religious platform.  This is merely my thoughts on my views and the argument that was presented.

To also make this clear: I LOVE my son.  He is my whole world.  My rock, my angel, my beating heart.  I would not trade him for anything.  He is and always will be the best thing to have ever happened to me.  He really is God’s greatest gift to me.

That said...

It has been my mantra for a while what everyone else has been convincing themselves of.  I guess it makes us feel a little better to sit back and tell ourselves that this mysterious God wouldn’t give us more than we can handle.  I have to say, those moments definitely exist where we REALLY need something to help us get through the ugly.  It can make things a little easier to deal with.

But when you think about it, why on earth would God give people disabilities??  Especially some that are on the extreme end?  The argument was made by a dad who has a child with severe Autism.  You can read about it HERE. Severe as in nonverbal, headbanging, low functioning, mentality of an 18 month old, and the child is 9. He and I do come from different worlds of Autism.  Still, he makes a valid point. He was raised Catholic, but is no longer a practicing one.  He makes the argument regardless of one’s religion saying he doesn’t see how a god could possibly want to give someone this life of total disability.  Now he does view his son as a gift, as we all definitely do.  My son truly IS a gift to me, the BEST.  But Autism as a gift?  I agree, let’s give it back.

I do not wish to have a “gift” that is so “fantastic” that it separates my son from other kids.  I suppose it wouldn’t be so bad if he was completely oblivious to it, but he’s notHe knows he’s different.  He knows he isn’t like other kids his age.  He honestly thinks there is something wrong with him and is always, ALWAYS, asking to be “fixed”.  He tells me all the time that he needs a new brain...  Would God want to make a child that miserable?  Where he asks all the time to be “fixed” and since there is no fix for him reverts to how he needs to just die?

I envy  Autism Daddy, because his son is truly completely and totally oblivious to anything around him.  He doesn’t know he has severe Autism and is different from his peers.  He and his wife never have to sit and hear their child ask to be fixed, or get notes written or hear their son say their two choices are to run away or die because he knows he’s a hassle and is different and can’t control himself.  Hell, I envy the fact that there are TWO of them at home being able to deal with their everyday reality.

I see people having conversations with children younger than mine and I envy them that.  In fact, it HURTS.  I still can’t have a conversation with my child. He’s 9 years old.  Sure, he’s verbal, very much so.  But he can’t carry on a conversation. Hell, 80% of the time you can’t even figure out what the heck he’s saying!  We both often get so frustrated we end up crying and upset and completely give up.  He can’t communicate well enough.

For those who want to sit on your little high horse and go “well why doesn’t he learn” or “why don’t you teach him?” Let me ask you something:  does your 1 year old child ask for a cup simply because you will them to?  Does your 6 month old walk simply because you tell him he needs to figure it out?  No.  No they don’t.  Life doesn’t work that way.  Years of speech therapy, behavioral therapy, and just plain therapy have not been effective in some areas (and we are ALWAYS trying new approaches).

My other peeve are the people who tell me, “I don’t know how you do it. I could never do it.”  Please.  I’m no saint.  I’m just a mom.  Doing what anyone would do for their child.  I do what I can the best that I can.  I’ve endured years of BSCs, TSSs, and therapists invading my home in addition to psychologists and neurologists with no end in sight.  I’m not perfect.  I yell at him for things when I know he can’t help what he’s doing.  I curse.  I cry.  Getting him ready in the morning or even just for a trip to the store is a nightmare...

I’m sure there are times when I could engage him more, do more.  But so many days I am just so exhausted that I just want to sit.  So he goes, left to his own means.  He may spend a little too much time on the computer.  He may be left to completely destroy my room/his room/the living room while I zone out staring off into space, just looking for even just 10 minutes of peace.  My day is so full of “Mom! Babble...” “Mom! Babble...” “Mom! Babble....” that even 2 minutes of silence is absolute heaven.

And yes, I look forward to bedtime every night.  The only time of day when I can actually get anything done and be somewhat productive.  People joke about their pets or their toddlers interrupting them while in the bathroom on the rare occasion it actually happens.  Guess what.  That is my reality.  That is my every day.  I can not go to the bathroom or shower without seeing the bright bubbly face of my son through the door or shower curtain (he hasn’t figured out modesty yet).

Let’s not forget that when he is at school/daycare my anxious wait or nervous checks at caller ID when the phone rings, just waiting for that phone call or written behavior report of what he did “wrong” that day.  His reactions and responses just don’t fit in the typical world.  It’s heartbreaking.  He doesn’t know how to respond.  He just reacts.  Often, it does get him into trouble.  The worst part is, he tries so hard...  So hard... To be good.  To control himself.  At least his peers are understanding and forgiving...

To make it better, we are venturing into the world of adolescence.  Yep, puberty.  So we are not only getting into the smell to go with the refusal of bathing, but the sassy back talks and lip that would rival a 16 year old girl.  At least once a day he threatens me.  At least.  He is also getting increasingly violent.  Choking, hitting, biting, sucker punching....  Hormones are a wonderful thing.  Let’s throw Autism, ADHD and all its fun and impulsivity, and the beginnings of puberty in one bucket and shake it up.

That’s a gift from God?

In the end all I’m left to do is cuddle with him every night (and randomly throughout the day), talk with him, and tell him how much I love him and how proud I am of him, always reminding him that it’s the behavior I don’t like not him. (With lots of hugs and kisses.)

Then take a deep breath in preparation for tomorrow.

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