Behind the Mask

It has been almost a year since I have blogged and I hate that so much time has passed. Of course I have a million things I want to share, report, vent about, and get feedback from but alas we must move on to the present. One day (in my next life) when I have time, I will go back and give the play by play. Today, I wish I was a more dedicated blogger so these posts are not so few and far between; life keeps moving and I wish I was able to type the things that I experience daily and the thoughts that go through my head as they occur. So let’s just jump right in. Hopefully this will be insightful and not a mess of unorganized thoughts and unruly emotions.

“Behind the Mask” speaks to the secret life that most parents of children with autism live daily. For me this secret life consists of crying, biting, tantrums, poop accidents, frustration, fear,  and a cycle of exhaustion that never lets up. It’s a lot like being in a very unstable, emotionally unhealthy relationship- except it’s your child not a peer.

For about a week now we have been experiencing almost non-stop crying at home. If this sounds unpleasant to you- you are just scratching the surface of the frustration level this brings to everyone who has to suffer through it. I should not be surprised, Miles has cycles of behavior that follow the seasons and months almost exactly. Fall/Winter is our clingy, whiney, crying for no reason all the time- season. He has become more verbal (blessing) so it is easier to manage the immediate needs of “hold me” and “blanket” and of course the “sock”. However, why is he crying- I never know. This is not tantrum crying but a sobbing that occurs with tears and fearful looks in his eyes. It is both heartbreaking and dare I say, annoying (harsh I know but this is real). To sit and rock a sobbing four- year old for hours every night is slowly breaking my heart. This happens every fall/winter so you would think by now I would expect it, deal with it, and move on. And the “mask” of my life has moved on. I go to work, I socialize, I write inspirational and up lifting things,I laugh and joke about the simple things, but under the mask is the fear and the heartbreak that I have no idea how to comfort my own child. Under that fear is the guilt and disgust I feel for abandoning my other child while trying to calm the other. And buried under it all is the devastation that this might never get better. It is hard to even read that last sentence because I have trained my brain for optimism and hope and believing that life will not always be this hard. But there is always a lingering doubt way way in the back of my thoughts, way behind the mask.

In addition to the crying, biting has now re-entered our behavior list which adds a fun twist to tantrums. I can’t let him lay his head on my shoulder without jumping back to protect myself.  And the infinite times a day that he tries to bite me are masked by my fake self that is presented daily to keep it all held together.

Poop accidents which are becoming more common instead of less common- almost five months into potty training are exhausting, disgusting, and a cleaning process that drains me daily. Yes, this will pass and yes this will get better but living in it is HARD.

Too many people confuse my “strength” with my mask. My mask tells the world that this is not a big deal and that I am moving through all these behaviors properly and fabulously. But that is just the mask. Inside I feel scared that my 20 year future is the reality right in front of me.  My mask puts on a happy face which we all must do at some point in our lives but the fear inside me is very real.

This is not my usual “I’m going to conquer autism” blog and trust me I will have blogs that are raging with positivity and kick ass mentality. But tonight, the mask has been put away and I needed to let my feelings come out. Rest assured my mask will be ready for me tomorrow, waiting at my bedside but the feelings are still there, behind the mask.