"Look At Me"

"Look At Me"
monotype and screenprint

Wednesday, August 28, 2013

Words Are a Gift

I walk down the crowded hallway.  Kids brush past me, laughing and yelling.  The smell of sweat and gym socks lingers in the air.  I stop outside of Derek's classroom, my heart beating in my chest.  Every day it is the same.  For just a few moments, as I wonder whether my son had a good day or a bad day, anxiety overwhelms me.  I open the door.  Derek is sitting in his seat.  He looks up at me and smiles.  Then he runs to me and hugs my legs.  He doesn't let go.

"He did great today," the teacher tells me, and I am filled with relief.  So far, Derek is doing pretty well at school. He is making friends.  He is trying new things.  But still, I worry.  Especially on the days when he fights tears when I drop him off in the morning.  (I want to know why!!!)  I worry when I'm told he had a rough day and didn't want to do any of the activities.  I want to defend him.  I fight the urge to say, "Maybe he was tired.  Or hungry.  Or overwhelmed."  Any number of things could set him off.  Instead, I remain silent.  Not every day is going to be great.  I know that.

We start walking home.  I ask my older son how his day was and he jabbers away, telling me about recess and some of the things he is learning.  I look at Tyler and smile, wondering if conversation will ever be this easy for Derek.

Tyler runs ahead a bit.  He turns around and makes a face at us.  Derek doesn't notice because he is looking down.  His feet scuff the ground as he walks, and he seems fascinated by the sound.

We stop at the park, because Derek wants to go "Sliding."  (That's his word for going down the slide.)  It's become a daily ritual.  I ask Derek how his day was and get no response.  I ask, "Did you have fun?" and he quietly echoes back, "Have fun."  That's all I get.  I try to ask more direct questions, like "Did you sing any songs?" and "Did you play with friends?"  Still nothing.

I remind myself that if it's hard for me, it must be even harder for my son.  I've been there for him since day 1, anticipating his needs and learning to translate his actions.  Suddenly, he's being thrust into a new environment, with new people, for 36 or so hours a week.  And he can't tell me what is going on.  That can't be easy.

Last Friday a purple newsletter was sent home from the kindergarten teacher to all parents, telling us what our kids were learning.  It encouraged us to talk to our children every day about their school day.  Welp. I'm trying.  One-sided conversations don't get you very far.  I wonder if other parents realize how blessed they are to be able to simply talk to their children.  It sounds so easy, so natural.  Yet those of us with non-verbal children would give anything to be able to do that, for even a day.  Take nothing for granted, folks.  I don't.  Words are a gift.

Wednesday, August 14, 2013

Why I Worry

I was awake most of last night.  Every time I thought about Derek starting kindergarten in the morning, I had to fight the urge to vomit.

Trying to explain what it is like to have a (mostly) non-verbal child on the spectrum to strangers is difficult. Everybody gets nervous about their child starting kindergarten, right? And most mothers cry.  Why? Because our children are growing up.  They are becoming independent.  They don't need us anymore.  I remember being a little bit nervous when Tyler started school.  But it was nothing, and I mean NOTHING, compared with how I felt this morning.

Why do special needs parents worry?  And cry?  Because our kids do still need us, but they have to start school anyway.  It is terrifying to hand over a child that cannot use the bathroom independently or eat with utensils to a kindergarten teacher.  And what about a child who cannot tell you how their day went?  We have to rely on communication books and trust our children's teachers and paras to be honest with us.  It's not as easy as it sounds, especially when we hear more and more horror stories about our kids being bullied on the playground.  Or worse yet, being bullied by the teachers themselves.  I honestly don't think that will happen at Derek's school, but I never expected to have an autistic son, either.

I worry about more than that though.

I worry about anything and everything.  Like whether or not Derek will make friends. Whether he'll eat anything at school.  Will he be able to tell the teacher when he needs to use the bathroom?  Or will he have an accident and get made fun of?  Will he spill something on his shirt and have a meltdown?  Will he bite himself out of frustration (yes, he does this) or end up hitting a teacher or a student?  Will he be able to keep up with his peers academically?  Or will he continue to fall further and further behind?  My worries are endless.

It doesn't help when I read about stuff like this happening, in Omaha, NE (3 hours away from me):

My ex calls me in a panic this morning saying that he put Jeremiah on the bus this morning, and that they couldn't find him. I freaked out when he called.They found him in a different classroom with a different Jeremiah name tag on him. When they did roll call Jeremiah just said his first name and not his last name. He's 5 with Autism, he didn't know what was going on. I'm just glad he wasn't scared and that they found our little man. 

Jeremiah is ok.  But his mom (my friend) is probably not too excited to put him on the bus tomorrow.

Derek no longer rides the bus, so this won't happen to him.  But he rode it to preschool. And he'll ride it on field trips.  I have a paralyzing fear that someday my son will be overlooked somehow and left on a bus. Especially if he happens to fall asleep.

When I picked Derek up from school today, he was near tears.  I'm pretty sure he was just tired and overwhelmed.  8-3:30 is a very long day.  Everyone I talked to (teacher, paras, aids, etc.) said he had a great first day.  But I can't get two words out him.  If I ask how his day was, I get no response.  If I ask if he had fun, or if he liked school, or made friends, I get nothing.  Silence.

Whoever said "Silence is Golden" didn't have an autistic child.

I know it will get easier as the days go by.

As I sit here with my son, who hasn't left my side since he got home from school, I fight tears every time I hear him say, "Snuggle, please."

The only thing that makes me feel a little bit better about repeating this entire process again tomorrow, is the fact that Tyler played with Derek at recess today. (He did this voluntarily!!!)  He told me he wants to every day this year.  I didn't expect Tyler to like having Derek at school with him.  I was worried he'd be embarrassed.

Sometimes small gestures make a big difference.

I don't think Tyler realizes how much it helps Derek to see a familiar face.  

But, I do.  And knowing that Derek has the best big brother in the world in his corner eases my mind just a little bit...

Monday, August 12, 2013

A Boy in Bling...

Just when I'm getting my anxiety about Derek starting kindergarten (sort of) under control, incidents like this happen:

We were playing at the park and Derek took a sip of water from my water bottle.  He promptly spilled it down the front of his shirt.  For those of you that don't know this, my child can't stand having his clothes wet. He likes to swim and he likes baths, but if even a drop of liquid gets on his clothes, he strips.  We've worked on it in therapy, but it's still a problem.

So there we are, in the middle of the park, and Derek is shirt-less.

No big deal, right?  Boys can play without a shirt.  Only Derek refused.  He started crying and wanted to go home.  But it wasn't possible, because we were killing time before a doctor's appointment and we were 30 minutes from home.

Not only was Derek crying, but Tyler was pouting that we had to leave.  Sorry kid.

We got in the car and drove to Target.  I planned on taking Derek in shirt-less.  I figured, if they said anything to me about the "No Shirt, No Shoes, No Service" policy, I'd just beg and plead and explain the situation.  But Derek refused to go into Target without a shirt.  Go figure.  Frantic to dissolve the situation before Derek had a full-blown meltdown, I finally convinced Derek to wear my sparkly-silver-bling hoodie. He gave me a "Mom are you CRAZY?"  look, but he tolerated it when I told him we'd get him a new shirt.

He was more than happy to exchange my girly hoodie for a grey camouflage shirt.

Crisis averted.

*Note to self:  Give kindergarten teacher at least 5 extra changes of clothes.