Isabella Grace-ious

Isabella Grace
The story of the girl who changes my life

Thursday, April 14, 2011

Look at me.

Common theme around here: Isabella misses a milestone. I wait patiently, then impatiently for it to come on its own time. When it doesn't, I start to worry. I talk to doctors and therapists about it, and we make it a new IEP goal for her to work on. I get obsessed with practicing the skills she needs to master the milestone while she's home with me, so much so that it isn't fun for her nor I after about a day or two. I start to really worry that she will never be able to do whatever it is she isn't doing, and eventually I accept that I'm okay (or will work really hard on becoming okay) with her not ever getting to a point where she is able to master the milestone in question. Then, out of nowhere, she does it. And continues to do it. Milestone mastered, she never looks back.

But then, a new worry. Another milestone missed. And so the story goes.

For a long time, my biggest milestone-missed worry was her speech. We struggled for so long with getting her to make sounds, and then making those sounds mean something. I researched and googled and accepted that she might never speak. So we took her to sign language classes, and enrolled her in 2 separate speech therapy sessions. In time, I was able to understand most of what she was saying, but not many other people could. But now she talks. Not WELL, per say, but enough to hold a conversation with most people she meets. And dang, does that girl have a lot to say.

So my worries moved on. I worried that she would never jump. I worried that she would never be able to walk up stairs without me. I worried that she would never be potty trained. I still worry that she will never dress herself.

But lately my frustrations feed off the fact that my child won't look at me. Not much anyway, and definitely not for a long period of time (unless you count 3 seconds long). She rarely looks in someone eyes without prompting, and she never holds eye contact while she is speaking to you. When she does look at me, it's usually that spot right above my nose, in between my eyes. And even then, she looks uncomfortable.

She's been this way forever. At first I thought she was just shy. She has always been affectionate, but when asked for a kiss, she hides her face, ducks her head, and moves into you passively, so that she becomes the recipient of the kisses. I realize now that she just isn't capable of looking at my face long enough to know where her kiss needs to land.

I have been stressing about this for a while now. Back in November I made it a big point with her school district to add it to all areas of her IEP, so that there isn't a teacher or therapist around her that shouldn't be making eye contact a main priority when they are working with her. I can't say I haven't seen an improvement, because she knows now that it is something that she should be doing, and she will (when asked to) look at you for maybe a millisecond longer than she used to. But she has a LONG way to go.

This past week has been especially cruel in pointing out her lack of progress in this area.

Exhibit A: Spring Pictures. What a fiasco. I spent forever picking out just the right outfits for the kids to wear, and even had back up outfits ready for if it was cold outside. I packed snacks and capri suns to bribe them into sitting still long enough to get some decent shots. I waited until the last possible second to give them baths and dress them so that their hair would be perfect and their clothes would not wrinkle.

The disaster started on the way there. Noah fell asleep literally a block before where we were scheduled to meet. Isabella was breathing snot bubbles out of her nose due to a cold that decided to develop ON PICTURE DAY. I realized after I parked that I hadn't eaten anything all day, so I was instantly crabby. These three things alone spelled a recipe for disaster, but it didn't end there. When we got there both kids took off running through the field. The very muddy field. In their yellow and white picture outfits. When the photographer got there, Noah decided he was terrified of the camera and started screaming whenever she came near him. The first few shots of Bella, while serious, could have been great until I realized that she had a clump of hair stuck to the drool on her chin. Noah finally warmed up to the camera enough that he stopped screaming at it, but wouldn't sit still long enough to capture enough workable shots, and instead insisted on climbing up and down the stone steps of a building, or worse, picking all of the flowers and tearing them to shreds while running around a tree.

But my biggest frustration was getting Isabella to even look at the camera. She would smile pretty and say cheese just fine, but she was always looking down or to the side. When I would use my stern voice and remind her to "LOOK AT THE CAMERA, ISABELLA GRACE" she would look at it with the most serious and reluctant face that she could muster. Definitely not a "yay-spring-picture!" face. More like "I-hate-my-mother-and-I-refuse-to-smile-and-look-at-the-camera-simultaneously-so-there" face.

I left the photo shoot near tears. Luckily, Jen called me on my way home and talked me out of my funk, and even offered to take pictures of the kids herself in her backyard if it would cheer me up. I do love that girl.

The no-eye-contact saga continued into yesterday, though. Because of the spring photo shit (i mean shoot!), I have been much more aware of and much more frustrated by her lack of eye contact. I have been trying to patiently find ways to both increase her spontaneous eye contact, and her ability to maintain eye contact until I look away first. She knows I'm frustrated with it though, so she has been too. Yesterday both kids were feeling kinda yucky but we were all sick of sitting around the house so we decided to walk around the mall for a while. We made it to the indoor play area, and I busted out my phone to get some pictures of the kids playing. Isabella was sitting on one of those 50 cent mechanical rocking car/boat/plane/whatever things, and I was trying to get her to look at me so I could get the perfect shot. No such luck. She repeated "cheeeese, cheeeeese, cheeeese!!" over and over, all the while looking up, down, and every other which way except at me. I tried reminding her nicely, then pleaded with her to just look at me for long enough to take a picture. Nope. Another mom nearby was watching all of this take place, and I could just imagine her thinking "why the hell won't that child look at the camera? And why the hell is that mother making that big of a deal over it?" Finally I lost my patience and my temper and told Nik to "Get Noah NOW. We're leaving!" Both kids looked up at me like "WTF?!" and both kids had major meltdowns all the way out of the mall to the car. Nik was smart enough to not say a word to me, and didn't even ask me what set me off enough to take two kids, who weren't even misbehaving, out of a playground just so we could listen to screams of protest, when we really didn't even have to leave.

I got in the car and felt so ashamed. I was embarrassed to have lost my temper over something that Isabella obviously struggles with so much. I know that it isn't as easy for her to do some things that seem so natural to most people. I know this, but I don't understand it, and I don't know what I can do to change it. I totally misbehaved at the playground, and my children missed out because of it.

It didn't help that as we are driving out of the parking lot, I hear a quiet voice in the back seat say to me "I'm sorry I didn't look at you, mommy."

That child is a heart breaker.

So this is our struggle today. I know that in time, and with work, her eye contact will improve. I know that she will work on this so hard, even though it makes her uncomfortable, and even though it does not come naturally to her, all because it is important to me. She doesn't know yet that looking at people is a huge necessity in the long run at achieving social competence, just as she didn't know when she was working so hard to make words that being able to talk to someone was, too. But I know this, and without her having these skills, I am so afraid for her future. Will she not have friends because kids won't understand what she is saying? Will her teachers get annoyed when she repeats phrases over and over again, and will they think she is being disrespectful when she doesn't make eye contact with them? Will her employers think she is incompetent socially if she doesn't interact with the outside world "normally"?

I want her to connect with the world in the same beautiful, loving, and eager way that she connects with me. I want the world to see her as she is: a sweet, hardworking, and determined soul who loves to love and be loved. I just hope the world doesn't pass her by without a second glance, thinking she is incapable of so many things I know she can do, all because she isn't looking.

I found a poem on a blog that another mom with a child with special needs posted. It was written by Kathy Winters, and while the words of the poem are simple, the meaning is huge.

The Misunderstood Child

I am the child that looks healthy and fine.

I was born with ten fingers and toes.

But something is different, somewhere in my mind,

And what it is, nobody knows.

I am the child that struggles in school,

Though they say that I'm perfectly smart.

They tell me I'm lazy -- can learn if I try --

But I don't seem to know where to start.

I am the child that won't wear the clothes

Which hurt me or bother my feet.

I dread sudden noises, can't handle most smells,

And tastes -- there are few foods I'll eat.

I am the child that can't catch the ball

And runs with an awkward gait.

I am the one chosen last on the team

And I cringe as I stand there and wait.

I am the child with whom no one will play --

The one that gets bullied and teased.

I try to fit in and I want to be liked,

But nothing I do seems to please.

I am the child that tantrums and freaks

Over things that seem petty and trite.

You'll never know how I panic inside,

When I'm lost in my anger and fright.

I am the child that fidgets and squirms

Though I'm told to sit still and be good.

Do you think that I choose to be out of control?

Don't you know that I would if I could?

I am the child with the broken heart

Though I act like I don't really care.

Perhaps there's a reason God made me this way --

Some message he sent me to share.

For I am the child that needs to be loved

And accepted and valued too.

I am the child that is misunderstood.

I am different - but look just like you

Kathy Winters


  1. you have the greatest picture of her as your blog header... those sweet, big blue eyes that are staring right up at everyone who looks at this blog, it's perfect, really!
    it's times like these we dig for patience we didn't know we had left, and she will eventually meet this milestone like the rest. i dread & probably along with most moms, professional pictures with the kids... is like roulette... it's a 50/50 crap shoot.

  2. I heart you and your beautiful girl.

  3. I have a four year old daughter with Autism. I thought I was crazy for attempting to get her pictures done but I found just the right photographer. I called around until I found a photographer with experience taking pictures of children with Autism. She was fast with the camera and got some great shots. Also being in the enclosed studio really helped as my Abby has "escape" issues. Don't give up. I'm sure you will find someone who can capture those sweet faces. If you would like to check out my blog it's: