I’m tired of my lies

I haven’t been lying to you per se, but I haven’t been honest.

So many times I have people say to me “Twins… both with Autism… I don’t know how you do it.” And I reply, “It’s all I know.” and “I’m fine.”

Although “It’s all I know” is true. “I’m fine” is not.  Not in the least.

Things at this moment are difficult. More difficult than our normal.

One daughter can be in pain and never can tell us where. Sure, it’s distressing as a parent to not know what’s hurting your child.  But add to it the fact that the only way she can express her pain is through screaming and violent outbursts. I can’t tell you how many of my teeth this girl has cracked by headbutting me. (My dentist is probably the only one grateful for this as I am a frequent visitor.) How many untreated fractures in my fingers and feet I have.  And there’s nothing like coming into the office with bruises and black eyes.

This week alone I’ve had to patch seven holes in our walls from her slamming her head into it due to pain.

The other is on a different path. She has a horrible teacher who does not follow protocol and demonizes my daughter. This has caused additional anxiety to hormonal 14-year old with Autism and anxiety issues. Although we’ve been working on a plan to get her the hell out of there, it’s a long process. And the spillover is that she lashes out, throws things and attacks others when she is overly-stressed.

Over the past few months, it was so bad that my husband is at home, not working, to be closer in case of an emergency. I had to find a new job as my old one essentially refused to accommodate our family’s needs.  And I can’t remember the last time we both have a full night’s sleep. Some will suggest we need to get more time to ourselves and perhaps talk to a professional?  We try. I promise you, but it’s near impossible because at any moment we could get a call and have to drop what we’re doing to help the girls.

A study showed that parents of kids with Autism are experiencing similar stress levels of combat soldiers. I am the one who would usually dismiss this kind of thing. Although I would never compare myself to the dedicated tough work of a combat soldier, I need to stop lying to you – and myself. I am over-stressed, fatigued and generally depressed and anxious, more often than not.

Why do I bring up this study – which some will claim is a decade old and is no longer relevant?

Because it is.  It is for me and many parents like me.

The study showed mothers of kids with Autism spend at least two more hours each day caring for their children than kids from typical families. At 14, most kids don’t need to be dressed, get help washing or even finding activities to do.  In our home, we do this daily for both our girls. We also cannot leave them without supervision. Someone has to be here with them every minute of the day.

The study also pointed out that most mothers of children on the spectrum were interrupted at work an average of once every four days, compared to other mothers who had fewer than one interruption every ten days. For us, we get at least one phone call PER DAY, in addition to daily emails, text messages and notes home.

And then there’s the paperwork.  To get services for them, there is a ton of forms to fill out (and most have to be written by hand). I have learned some shortcuts but still I spend at least three hours per week on forms, emails and other outreach for the girls.

We’ve gotten used to the glares and nasty comments from strangers. “Your child is a problem.” “She’s crazed.” “What’s wrong with her?”  And as much as this is commonplace, it’s too stressful for me as it hurts me to the core, and often leads me to decide to self-isolate and ignore friends, colleagues, and others. It’s easier to just stop and hide than deal with the stigma.

It’s difficult to admit weakness. And there are days I am still surprised I am starting a new job with people who genuinely seem supportive. There are days I am surprised I laugh.  There are days I am surprised I survived at all.

So there’s the truth. Even though it has not set me free, at least I can stop pretending.

And it’s not all doom and gloom. I am strong. I am smart. And I am getting good at fixing holes in drywall.