Battling the Inner Voices

All-in-all, we handle it well most days.  We can't block out the neurotypical world.  They're there - NT children - everywhere you turn.

Admittedly, we've had a rough week or so, regardless.

Several things happened this week that really cut me to my quick and left a dull sting of reality in their place.  Sometimes, I was left feeling like the world just doesn't understand.  Others, I was left feeling like it didn't matter if they understood or not, it didn't change reality.

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Earlier in the week, we were confronted with the fact that people will treat Jack differently.  I think that having an autism diagnosis makes some people wary.  They think that they can't have a "normal" relationship with Jack, whatever that means.  Sure, interactions with Jack may not look like they would with a NT child, but that doesn't mean that they're not worth having.  I feel like I will have to advocate for this until my last breath - that people should treat Jack with the same courtesy and respect as they would anyone else.  That he's worth the effort.

Others, knowing that Jack will easily meltdown, just stay away.  I don't know if it's fear, or lack of knowledge of how to approach, but it leads others down the road of avoidance.  My life is an exercise in engaging Jack, and I want to scream out to all "Watch me!  Model what I'm doing!  It's a work in progress, but worth each ounce of the effort!"

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On the heels of a momentous victory in our world, I was told by someone that I don't give Jack enough credit for what he can do.  It really bothered me and has left a barb in my side for days.  I've spoken relatively little about it, except to one of Jack's other therapists - the one who's worked with him since before he got his diagnosis - and who is so painfully honest that she would tell me one way or the other.  She actually laughed when I told her this, saying that she thinks I'm - at times - the eternal optimist.  That I try to emphasize in one-to-one dealings just what he's capable of with the appropriate support.

That's why I've pained myself trying to find an ideal academic setting for Jack.  I set the bar high, I know the support he needs to achieve those lofty goals, and I want to ensure that he gets it.  I want people who work with him to be educated on autism and all of it's aspects so that they are better equipped to deal with the self-absorption, the echolalia, and the sensory issues that can be easy to put to the back burner, but that are so vital to address so that actual learning - not rote memorization - can take place.

That's why it stung so.  I feel like I'm constantly trying to advocate for his abilities.  I also try to advocate against compartmentalizing Jack, as people tend to do.  They look at his splinter skill - being able to spell words from Super Why! with magnetic letters from memory - and it tends to become a side-show act.  Look at the amazing autistic boy spell CARROT with his letter set!  He can't color a picture, but he can spell MEATBALLS with magnetic letters!  I try to downplay this not because it's not a talent, but because people tend to emphasize the stranger aspects of Jack's disabilities, and that's not what I want to do.  He's not a spelling machine; he's a person.  He's a person who deserves respect more than watching him engage in non-functional behaviors.  He deserves engagement.

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Finally, we were sitting in a rare moment alone - Brian and I.  It was somber, but peaceful.  I look over to see tears in his eyes.  When I asked what was wrong, he said it was because he saw how nice and quiet the other children - children who were much younger than Jack - were sitting, and he wished Jack could be there, too.

Many people who work with Jack would say that sitting still is a lot to expect for a 3-year old, and it is; however, most kids manage it while still fidgeting a bit.  Jack, on the other hand, cannot.  His sensory issues - which I don't feel that everyone takes very seriously - keep him from being able to participate in many family activities, like going out to eat or even just going to the store.  He needs quiet, dimly-lit, mellow surroundings.  It's not always easy to find.

I feel the envy creep up from time-to-time and the sadness that Jack hasn't followed the path of his peers.  That some things we might love to do - like going Trick-or-Treating - are far more complex for his autism and sensory issues.  Usually, I try to bury those thoughts or release them on to the page, but seeing someone I love dearly feel the pain of these realities hurts more than when I feel it myself.

I think that those who treat kids with special needs aren't always aware of these issues that surround the whole family.  You don't know until you live it.  Until you see the years slip by and you wonder if you'll ever be able to take your child to Disney World and have him enjoy it before it all loses its magic.  Or if your child will finally understand Santa Claus before it's inappropriate for him to enjoy it.  Or if he'll ever get a smile on his face at the taste of ice cream or his birthday cake.  You worry that the joys of childhood will slip away with the years.

And all I could do to ease his pain was to simply squeeze his hand in an acknowledgement that I understand.

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I wish I could say that I wished that the world was different.  Ultimately, I don't wish Jack was different, because I love him for who he is.  He's happy in his life and that's what's important.  I do wish that things were easier for him.  I wish that the realities of autism didn't tend to collide with the picture in my head of what motherhood was going to be.  Most days I can adjust the picture.  Others, I cannot.

Some days are about the victories.  Others are about survival.  In the days of survival, I have to take solace in the fact that more victories are around the corner.