Walking With Drake

One Mother's perspective on autism.

Sometimes Snow Globes Scream

I've always been fascinated by snow globes.  As a child, I remember having a very vivid imagination.  Snow globes were quite a hit back in the dark ages when I was a child.  The ones with the little cities fascinated me the most.  I used to always wonder if the tiny little people ever wanted to get out of that small bubble and live like the rest of us.  Yet, at the same time, I wondered what it would be like to live in that globe....that perfect little world.

On the way to therapy this morning I had an amazing realization. For Drake, being autistic, is much like living in a snow globe.  Before you all go nuts and crucify me, let me explain.

In the last few months Drake has developed some undesirable behaviors.  He has gone from this sweet little toddler who is mild and meek to an absolute rage filled five year old.  Please don't misunderstand, he isn't like this all the time.  Our sweet Drake is still very much here, but there is also a very new, unfamiliar Drake. My husband and I, along with his whole therapy team believe this new frustration/rage is stemming from his inability to speak. You see, autism is funny that way...it is ever changing.  Drake is changing.  He is developing. He is beginning to understand the world around him.  He is very aware of the who, what, when, and where of life in many ways....yet he can't express these thoughts verbally.  Can you imagine the frustration?

So what does Drake do?  He screams.  Rage filled screams.  He stomps his feet, he hits things, his face turns red, and he is angry.  Just as you or I would be if we wanted to do something so badly, but couldn't.

When Drake first started doing this I immediately recollected a quote by the amazing,  Dr. Temple Grandin.

“I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream.”

It was one of those wow moments for me.  

I've been wracking my brain for weeks trying to figure out a way to make this frustration easier for Drake. We have an appointment coming up next week with his Developmental Pediatrician, he has an  AAC communication device, he has his service dog, he has us trying to help him, and he has an outstanding therapy team. I'm literally doing all I can do and it takes a lot for me to say that. 

However, it is not easy for Drake to understand that, because he wants me to "fix" it, like I fix everything else.  

Now, back to the snow globe.  Imagine for a moment that you live in this snow globe little town.  Everything about the town is just the way you like it.  We will pretend it is Christmas....well, because tis the season, currently. 

The street lights have snowflakes perfectly placed. 

The sidewalk is sprinkled with the first snow.

The shop windows are full of festive and bright displays. 

The few people who live in your town always have smiles on their faces and work hard to make sure you have one too. 

Everyone is happy, pleasant, and perfectly content. 

Beautiful tree branches hang low with the first snowfall. 

Horse and buggy pass by on occasion, much to your enjoyment.

The days and nights are always the same.  

Then one day, you look up and realize there are people who live outside of your perfect little world.  In fact, there is a whole new world.  The people out there are different than you.  They don't understand that you like things to be the same every single day.  They don't understand your language, it seems foreign to them. They want to change the street lights from snowflakes to reindeer.  These people want to do away with the horse and buggy and put a train right in the middle of town.  There has been discussion of new people moving in, people you do not know.  

You are afraid.

You want them to understand that you don't like change. 

You want things to be the way they are right now, forever. 

You want to tell these people that they cannot change your world because it is all you know and understand.  But, they don't hear you.  You talk, and talk, and talk.....but no matter how much you talk  the words never make it to their ears.  

So what do you do?  You scream.  You become angry. You shake your fist at the outside world because you feel like you've lost all control.  No one understands what you're trying to tell them.  The rage is overwhelming because you don't like to lose control like this.  All you know is that people are trying to change things or take things away and they will never know how difficult that is for you.  

I have no idea if this is actually what goes through Drake's mind, but I'm pretty confidant that he feels many of these fears and frustrations.  I can't imagine the frustration he feels.  Yes, it is horribly frustrating to me, it wears me thin, it even makes me angry, but more than anything it just breaks my heart. I pray this child and all our children without verbal communication will find their voice if that is their desire. I wish I could always keep his snow globe just the way he likes it, forever.  Sadly, I cannot.  But, one day...I hope he can express to me that I tried with everything I had to make sure they didn't change those blasted street signs from snowflakes to reindeer.  

Christmas love and blessing to you all! 

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1 comment:

  1. Maybe for right now all you can do is scream with him. It is always comforting to to know someone is with you. I bet you really do feel like screaming too. Also please know of my prayers for your whole family as he goes through this time of growth