Friday, January 28, 2011


A clown twists colorful latex tubes into balloon animals, mesmerizing the group of children chaotically assembled around him awaiting a turn.

She waits. Wide eyed, patiently, a bit shy. She waits as I talk to friends and keep my eye on my 2 younger girls running amok on the playground. She waits as children who were waiting before her fill their outstretched arms with colorful poodles, swords, elephants, and silly hats. She waits as children who came long after her are also served. The clown seems to see every other child but her. The loud ones, the friendly ones, the adorable ones, the complaining ones. Not the one who sits and waits with the quiet, solemn trance of a monk.  She waits empty handed, for 17 minutes, allowing the other kids to push ahead. Allowing them to be noticed first. I see her swallowed by the crowd.

I'm annoyed. A little at the clown, but more at what it all represents. What I see happening to the beautiful, quiet, compassionate souls of the world sometimes. That the more extroverted, boisterous, showy, or "obvious" one is, sometimes the more attention one receives. That often you have to make the world notice you. Maybe I was annoyed because I was watching an amazing little girl being unintentionally overlooked... once again... as if she were invisible. Maybe I was annoyed because the invisible girl waiting was my precious 6 year old daughter... and she is not my only invisible child.


My eldest, at almost 16, roams to earth and I see her footprints vanishing behind her as if her presence might never be known. As if all that will remain of her are the scars on the hearts of the few who had no choice but to love her. I can count those people on a single hand. There will be no legacy. There will be no voice. She exists in the moment, as she is, passing through a world that seldom sees her. And when they do, they often look away.

A friend of mine, a single mother of a teenage boy with severe autism, once described the phenomenon of feeling people simultaneously noticing her son while pretending they don't as he publicly tantrumed or acted loud and "different."  Like she was both being scrutinized and avoided, stared at and ignored.  Conspicuously inconspicuous.  I could completely relate to her experience.  Sometimes I feel like I'm living in a fish bowl. Everyone looking in as I move in muffled slow motion, separated by the thick glass that divides the "normal" world from the "less than normal world" I inhabit. Everyone witnessing the spectacle of my life at a moment that should be ordinary. Those outside the fishbowl, unable to enter for fear of drowning. Those in the fishbowl, trapped for fear of suffocating in this planet's air. Living in concert with those who pretend they don't see us but I feel their sideways stares. I feel the space where humanity and connectedness should be. Those who cross the forbidden gap lighten my heart and mind like the kiss of an angel.


Before I was inducted into the world of special needs, I too would avert my eyes when I saw someone in a wheelchair, or a child with Down Syndrome at the pool, or an adult with cognitive impairments acting differently at a restaurant. I felt that not looking was a GOOD thing. You don't want to be impolite. You don't want to stare.  You want to act casual... if everything is normal. Like their disability or their atypical behavior doesn't bother you. Certainly, looking either away from them or through them is better than 'staring.' But now I wonder... is it?

Is there a potential problem in averting your eyes, acting like everything is normal, pretending you're NOT watching a kid have a meltdown standing in a long line for pizza with a mother struggling to control him? I mean, it seems the "right" thing to do. Just act normal, and the parent and child will feel normal. Right? So, we ignore the girl screaming in the restaurant, or the mom struggling to get her adolescent boy out of a store, or the 2 year old, severely palsied child going by in a wheelchair. 

But, if you see a typical child with a bloody nose, would you get the mom a tissue? If you saw a woman and her 3 young kids drop her grocery bags, would you help her pick them up? If you saw a kid lost in the Target, would you kneel down and help them find their mom, or walk by, eyes averted, trying to pretend it's not a big deal?  If we saw a cute baby in a stroller, would we smile and strike up a conversation saying "Oh, he/she is soooo cute!" to the parent?

Because a child lost, bleeding, or a parent fumbling to pick their life up off the floor is a big deal. Isn't it? And what if the child is not acting out or tantruming, they are just there in the world. Sometimes it is nice to feel like someone notices you, is interacting with you, at a time when you feel conspicuous or vulnerable or tired.  Just to feel your child is noticed for all they are.  That they are seen... here... visible. 


My 3 youngest and I walk up to the door of a convenience store.  I have my double stroller, always a debacle at getting through doors.  A girl in her late teens is exiting the store. She has no arms. Her hands come directly out of her shoulders and she is very short in stature. As I approach the building, she asks "Oh, can I get the door for you?"   I see that the door is now shut and must be opened by pulling a handle, so I hesitate for a milisecond wondering how on earth a girl with no arms could get the door for me. Then I figure she wouldn't have offered if she couldn't execute. "Sure, thank you SO much" I say. My 4 year old says with all the discretion of a young child "How can she open the door Mom?" I say, without embarrassment in a loud voice and with jovial sarcasm "With her HANDS... just like you and me, silly!" Then I make eye contact with the girl and smile. The girl indeed opens the door with her hand that comes out of her shoulder. I notice the book she's holding in her other hand: one of The Twilight Series. I tell her I've read it and it's great and we exchange thoughts about the book.  I thank her again.

My children noticed she didn't have arms. So did I. I don't think the point is that we have to pretend we don't notice. In pretending we don't notice, we ignore a chance to connect with those who are often visibly invisible. Those who everyone sees, yet pretend not to notice. 

I watch my introverted 6 year old run across our front lawn to meet my 15 year old as she gets off the bus. She's almost 10 years her junior, but shepherds her toward the door like an older sister, chatting all the way. My two invisible daughters. One has a chance to find her voice and make her presence known. Her footprints leaving indelible marks.  They're going to be big enough for two.  When one cares for and carries another, they leave a trail as bright and fierce as the tail of a comet.


I see them walking across the lawn, straight into my arms.  I see them.


pajama mom said...


Elizabeth said...

Oh, Alicia. I don't know why and I do know why -- but I'm literally weeping here at my computer.

This is so beautiful. So are you. So are your girls -- all of them.

I wish I lived closer to you. I really do.

Kim said...

You have no idea how much I love your writing.

I've written more in this comment and then deleted it.

I can really say no more than "You have no idea how much I love your writing."


Alicia D said...

Me too Elizabeth!

oh, and btw, holy TYPOS in my post. ugh, how embarrassing. obviously ive fixed 'em! :P

Tin-foil mom said...

Your posts are always AMAZING! Your words echo through my head, and melt in my heart. There as so many things you say that I can relate to. You are doing an amazing job with your beautiful daughter, they will never be over looked.. with a mother like you <3

DeeAnn said...

You are an excellent writer. You can put into words what so many of us feel in our hearts. I am so happy I have found your blog and that you are willing to share your innermost thoughts and feelings. Thank you!

Barbara said...

This post took the words right out of my mouth, it is so true. Why not engage with them, try to help. Staring is one thing, but actually lending a hand, oh wouldn't that be amazing! Your daughters once again gorgeous! Tink is going to be a model, the way she loves looking at herself so much, I just know it!

We had an incident two weeks ago where I needed back up, instead of the typical "what the ****" stare or "act as if this is normal" uh huh only if it was! I was trying to attempt an outing with both my children on the autism spectrum, did I see attempt, yes and I meant it to. . . My daughter needed new clothes(she loves to eat her clothes, and smear wonderful surprises in them too!), and I thought why not get them both new clothes, so were sitting there in a target, trying to dress my daughter in the dressing room as she is fighting me every step of the way, an occasional whack in the face happens, I deal with it. All while trying to keep my son from climbing under to peek at other women changing, it was quite a sight, as hes biting me, shes hitting me, I feel like I'm some sort of sick horror movie. I did the unthinkable, I diverted my eyes off my son to see if my daughter needed to be changed, yes how could I right? I turn around, hes already gone, clothes on ground, that including his pull-ups, hmm, this should be interesting! Don't ask me how this boy has problems with buttons, zippers, ties, but yet can undress like its nobodys business!

I grab my daughter who already ripped all the tags off the clothes, and is eating one of the sleaves, to find my son flapping his arms looking at himself in the mirror of the middle of the juniors section stark naked! Isn't life full of surprises? Of course there is the staring, the needless whispering under the breath, then theres the one family pretending this is normal, like ok normal for me, but c'mon it can't be normal for everybody!? Oh I just wished I had one person help, one, instead I quickly make a fast decision to let my daughter chew on the sleave on the ground, it was a wise decision at that I must say, I did have to take a think well let my daughter eat targets clothes, or catch my nude son from showing all of target what god gave him? So I look to find any piece of clothing whether it be a hoochie dress some teens wear now and these days, to wrap him up and get him back inside. Wow, I had to give myself a pat on the back, especially after I heard over the intercom "nude boy dancing in mirror, juniors section" just to make my life easier ya know?

I must say I did succeed, we left with clothes, some half chewed, some wearable, one piece outfit that will probably be given to the needy soon. Oh, yes I forgot to mention it was a hoochie dress I grabbed, and my son became attached to it because of the material, so it still lingers in the house. I will agree on everybody who already commented, amazing stuff you write! One day soon, I'll start a blog, so you can leave long crazy stories on my posts too :)!

Miz Dinah said...

Awesome. Thank you for the perspective.

Alicia D said...

Ok, Barbara... I both laugh and cry when I read your stories. I mean, the life...the LIFE!!! Oh, I sooo wish I was in that dressing room with you so I could laugh and cry WITH you and lend a helping hand. Goodness, not one person helped?!?!? that is exactly what I was talking about in my post... why wont people help? a small gesture means so much. but giiiiirl, you HANDLED it. You are so strong and amazing :)

Please start a blog. I will be your biggest fan! :)

kario said...

Gorgeous. Thank you.

Autism Mom Rising said...

I remember years ago as a teenage community college student reading in a psych class how people often avoid looking at people in wheel chairs and that those in them often feel invisible because of it. I'm glad I read that young because it taught me early to make sure I let everyone know they are of value, because everyone is, and to never look away from anyone for such reasons.

This is beautifully written. You speak what is in the hearts of many.

stagerat said...

Some people understand, some people know. The times when the tears can't come fast enough, or the breath support the laughter. They live on the same planet, but never touch. Then again, just occasionally, they do.

ANewKindOfPerfect said...

Thanks for commenting on my blog. This post brought me literally to tears. Your daughter is SO beautiful! And I can relate to every word typed here. I look forward to reading more of your blog. :)

Mama Deb said...

This is one of my very favorite pieces of yours. Just stunning, and so easy for me to relate to. You are so talented!!

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