Walking With Drake

One Mother's perspective on autism.

Finding the Light

I'm sure everyone has read  Welcome To Holland.  This short but powerful piece has been useful to me several times on our journey.  I often share it with folks who may not understand what it feels like to find out your child has special needs.  After all, we all go through our lives doing what we know how to do...until we need to learn a different way.  Being a special needs parents is exactly that....a different way of parenting.

Lately I've been thinking a lot about how my life has changed since Drake was diagnosed with autism  three years ago.  In some ways  life before seems almost dreamlike.  Yet, I don't find myself yearning for it.  I think early on I made it my mission to do anything and everything in my power to help him have a happy and successful life.  The first year was tough, trying to navigate this new world.  A world I had no clue about until I dove in, feet first.  Or maybe it was more like a belly flop.

To me having a child with special needs, autism specifically, is something like this...

Receiving your child's diagnosis is much like being in a very light and bright room....but suddenly everything is dark. There is no light anywhere.  You  manage to find the door, open it up and walk into another dark room.  Each and every time you find your way to a new door there is nothing but darkness.  You scream.  You cry.  You panic.  Or maybe you like the darkness?  Perhaps you need the darkness to envelop you so you don't have to think about how to get out of the room. Could it be that you're too afraid to try?  You're unsure of yourself and feel like giving up.

You wonder many things.  Why has this happened?  What caused the lights to go out?  Who can I get to help  me?  Even if I can think of someone to help me, how will I see to call them?  How would they find me in this very dark place?  You do not know anything about navigating your way because all of your life you have had light readily available.  You've never had a reason to learn about finding your way without it.

Then suddenly you feel this little tug on your hand.  In that moment you remember that you are not alone.  Your child is with you.  Mind-numbing fear begins to creep its way into the very recesses of your brain. Both of you are in complete darkness with seemingly no way out.  You try to pull yourself together because you need to be strong for your child.  You don't want him/her to be afraid.

You begin to feel your way around the room.  You look for the light switch, you look for candles, flashlights, or anything that could be a source of light.  The entire time you are holding onto the child so they will not get lost in this dark room.  The thought of them getting away from you scares you far more than the darkness.  It's so incredibly difficult because for some reason your child cannot speak in this darkness.  Yet surprisingly, the child isn't afraid at all.  They are content, happy, and seemingly at ease in this very dark world.

Eventually you get yourself together and figure out ways to navigate. You learn to do things in the dark.  You learn to rely on your senses to get around in this dark world.  You keep trying new things until you learn how to live life pretty comfortably in the dark.  And as always....that little hand is tugging you, leading you, pressing you to move forward.

Then one day you realize there is a sliver of light.  It is so tiny that you feel like your mind is playing tricks on you.  You try not to get your hopes up and even wonder if you are hallucinating.  Days, weeks, and months pass until one day you realize each day has brought a little more light.  You can actually see things in the room again.  Things still look a bit dull and somedays you can see much better than others, but you are relieved to see light again.

You also realize that other people have been there in the dark with you and your child.  You couldn't see them for your own fear and worry.  You begin to have conversations with them and are relieved to learn that you are not alone. Walking around in this very dim, sometimes dark room begins to become more bearable.  Sometimes you wonder about all those people you used to know who are still in their very light and bright rooms.  You wonder why they never came to help you while you were in complete darkness.  Then you realize they couldn't come because they don't understand the darkness.  They didn't have a little hand tugging them to plunge in further. Still, it hurts at times.  They could have brought you a flash light.  They could have checked on  you.  They could have helped in some way.  Later on you learn that sometimes dark rooms are not for everyone.  Not everyone has the privilege of learning to walk around in the dark.  Not everyone gets to feel the joy of seeing that first glimmer of light.

This journey with Drake has taught me many things.  I can assure each and every person reading this that I have more light in my life now.  Drake has taught me far more than I will ever teach him.  No, my life is not the same, but when I learned to walk around in the dark and I held tight to Drake's little hand I found a new me....a me I didn't know existed.  Our life is different.  The room is still sometimes dark and scary, but I also know that light can always be found.  As long as I have this little hand in mine I will do whatever I can to wait on that light, no matter how long it takes.

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  1. I love this. I would also add that maybe the little hand tugging yours is also trying to guide you. Our kids can see in that dark better than we can. Though they can't navigate it without us, they can show us the paths. :)

  2. my daughter would freak out in the dark. but i get the analogy lol this was beautiful <3