A sense of invisibility—you can’t always see what’s there.

This has been a tough year. There’s an undercurrent of stress and urgency that seems to constantly keep me on edge. I often feel like I am trying to keep the people I love most in my life off the ledge, and out of the path of reckless traffic.

We started out the year like most families do, hoping that it would be a blank slate with new beginnings. But as I look back over the last nine months, most of it has felt like holding onto a rope that is slowly coming apart. And the worst of it is what most people can’t really see, and the feeling that I am just at the beginning of another long battle in which I will often feel like I am getting knocked down.

Some days, it’s really hard to get back up. Some days, I am like most people, and I just want to say “fuck this shit,” and shut out anyone and anything that doesn’t hear me or understand.

You see, our daughter told her daddy today that she thinks I don’t want her because I am always tired. Hearing that, and trying to explain to my four-year-old that I am always tired because I desperately do want her, and that the reason I am tired is because I spend almost all of my time trying to think of how I can help her with her struggles, and get her all the tools and help she needs to be able to do the things she really wants to—things other kids don’t struggle with.

A year and a half ago, I knew that something was off. I knew that there was a change. She was more sensitive to the world around her, and she was more volatile when things didn’t go her way. After a very long year of constant hard work, and a second sensory evaluation, a small part of what I already believed was validated.

I don’t have a “diagnosis.” I don’t know if she is technically “on the spectrum.” I know that the first page of the paperwork we filed for supplemental therapy insurance from the state was called an “autism waiver.” I don’t know if my other suspicions about her are true, and that we are going to be facing other battles that haven’t been uncovered yet. And most people looking at us from the outside wouldn’t even know that there is anything to face, until they get to know her, and us.

When you watch her play, you wouldn’t see anything out of the ordinary. When she speaks, you would likely just miss a word or sound here or there and think you just didn’t hear her right, when in fact, she actually didn’t pronounce a letter or sound clearly enough to be understood. And unless you saw her in a full sensory meltdown, you would think she is like every other four-year-old.

And in the most significant ways, she is just like every other four-year-old.

She wants to be your friend. She wants to be everybody’s friend. She loves to dance, sing and tell jokes. She loves puppies. She wants to go to school, and just this last week, she decided she really wants to learn how to read.She has a vicious sweet tooth. She adores her grandparents. Her favorite holiday is Halloween.

But just the hint of the wrong odor makes her vomit. Loud, crowded places confuse her, and make her uneasy. She hates having her face touched or her hair washed. Last night, she was convinced that she had “boo boos” on her back, and swore that it hurt when we touched her. She has trouble sitting still, because her core muscles aren’t strong enough for her to sit without becoming fatigued. She can’t do a sit-up without putting her hands behind her head, and even then it’s a struggle. When she gets angry, she is angrier than most adults, and you can’t stop her from flailing, trying to hit or kicking, unless you pin her and wrap her like a boa constrictor.

Sadly, her struggles with all of these things make her “difficult.” She can’t “self-regulate.” She’s 
“disruptive.” She requires more—of everything.

As a mom, when you see your kid struggling with anything, all you want is for everyone who becomes a part of her little life to just understand—just to get it.

She has to work ten times harder to act “normal,” and so she often gives over to her imagination, and acts like a puppy. Puppies can be floppy, and uncoordinated. They don’t have to be able to pronounce the l’s in their name, or the letter ‘r’ in a word. Puppies are impulsive, and even when they are well-trained, nobody expects them to be perfect all the time.

When people see “Willow Puppy,” they see a little girl who might be a little odd, but instead of thinking something is wrong, they just write it off as being silly. It’s an easy fix to a tough set of problems. If I think of it through that lens, it’s a pretty ingenious coping mechanism.

Some people might try to tell me that a four-year-old couldn’t know that, but you see, aside from her struggles, she’s actually very bright, very intelligent, and brimming with talent. She’s got an enormous vocabulary, and on a pretty frequent basis says words I can’t account for. She makes up songs with verses and choruses, and sometimes when I watch her dance, I have no idea where her skill comes from. She is empathetic, and tries to comfort others when she sees them hurting. I think it’s because she can relate. I know her heart, and I know that all she wants is to be welcome, and to share kindness with others. Last week, a little girl she was playing with hit her. When the girl was crying and in time out, Willow wasn’t upset about being hit, she was offering hugs, and reassuring the girl that everything would be okay.

All of this brilliance, makes it even easier to hide what is already hard for others to see.

There are a few places she can go where she doesn’t have to self-regulate as much. She doesn’t have to be still. She doesn’t have to pronounce ‘th’. Our local children’s museum is our second home—so much so that we learned over the last week that our family has visitedmore than 120 times in the last year. The closest family to our level of attendance was in the 80’s. Trampoline parks let her do all of the big body work she needs to keep the wiggles at bay. I know they pose potential risk for injury, but so does climbing all over the furniture and playing a four-year-old’s version of parkour. And of course, parks with swings and jungle gyms allow her to do many of the things that soothe her out in the fresh air and sunshine.

It’s the places that she has to go, and must be in control that are so hard. Because there is nothing to outwardly suggest otherwise, her struggles are referred to as “some of her behaviors.” Her needs are difficult for a “normal” school to meet, but not difficult enough for her to qualify for a school with sensory friendly classrooms, and tools. And I have to be Mama Bear, which is so counter to my naturally acquiescent demeanor that I end up doing so much of the research, procurement, and educating about her triggers, tools, and needs, that it almost feels pointless to have her anywhere but home with me, and the few places that she can just be who she is.

When she is at home with me, I know who she is, and even when it’s difficult—even when we are both at the peak of pushing each other’s buttons—I know that I can talk her back off the ledge. When she is in the other “Willow safe places,” the only things I have to worry about are her feelings getting hurt if someone doesn’t want to play, the exceptional moments when she doesn’t play well with someone, or her melting down because I waited too long to leave, and she’s grossly overtired.

Not all delays and challenges we have are visible. Not every child you see with a beet red face, seeming to come completely unglued because their parent just told them they can’t scale the shelves in the grocery store is a brat.

Not every child who looks completely “normal”—whatever that even means—is having an easy time of it. And the mom who quietly fights for understanding, validation, and the help and grace her child needs will almost always be a little tired, frequently because she wanted her child more than anything, and sleep is useless when there is so much fighting to do.

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