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.

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...

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.

"Mama Called the Doctor"

On Friday night/Saturday morning (not sure which), I woke up to the sound of Derek moaning in his sleep and saying, "Hurt, hurt."  I asked him what hurt, but he went back to sleep.  He woke up several more times that night crying.  Not good, because we were at the lake--three hours from our regular doctor.

When he really did wake up Saturday morning, he woke up screaming.  He held his right ear and yelled, "OWIE!!!"  Uh oh.

On the one hand, high-five for communication, buddy.
On the other hand, terrible timing.

I scrambled to find a walk-in clinic that was open on a Saturday morning.

I told Derek that we were going to the doctor and that they were going to fix his ear.

I was not prepared for the way Derek handled the appointment.

While we were waiting for the doctor to come into the examination room, we read a book about Winnie the Pooh visiting the doctor.  Derek compared the stethoscope and other medical instruments with the ones in the book.  He'd match them and smile.

When the doctor came into the room, Derek scrambled onto the table and said matter-of-factly, "Hurt.  Owie." Then he pointed to his ear.

 I had to struggle not to laugh when he sung under his breath, "Mama called doctor and doctor said, no more monkeys jumping on bed."

Then the doctor looked at his ears.  He cried a little when she looked at the ear that was bothering him, but as soon as she was done, Derek lifted his hand for a high-five and said, "Yay! We did it!!!"

The doctor gave him an orange balloon for being so good...and he tried to put it in his infected ear.  I think he thought it would help fix it faster?  I explained that we had to go pick up medicine.

I have no idea what the doctor thought of my child (it was a very small clinic in a very small town), but I thought he was adorable and I couldn't have been more proud.

Usually doctor appointments are challenges.  Derek tends to be uncooperative.  He fights the doctor, cries, flops around on the floor, etc.  This time was different.  I'm not sure why.  Maybe Derek was in a lot of pain and he knew the doctor would help him?

What I do know, is that my baby is getting better and better at communicating his needs and telling people what is wrong.  For that, I am thankful.

Sad he can't swim.

The Words That Matter

I was talking to a fellow mommy blogger yesterday.  She has a 2 year old son named Mason who reminds me a lot of Derek at that age.  He only says about 6 words, and the 6 words he says aren't pronounced correctly.  You can find her at My Yellow Brick Road.  I remember those early years.  They were hard.  No, I'm lying.  They were more than hard.  They were exhausting and terrifying and frustrating.  Derek couldn't communicate his needs and had no desire to interact with anyone.  Tyler was jealous and angry.  I lived in a perpetual state of fear that things would never get any easier.

Thinking about those early years and everything my family went through no longer causes me pain.  The multiple evaluations.  The sedated ABR.  The MRI and EEG that came back inconclusive (I could kick myself for not getting a second opinion, but there is nothing I can do about that now...)  Starting ABA, which helped my son tremendously.  Not only did he love his therapists, but he learned that words had meaning, started PECS, learned some sign language, and finally found his voice. Maybe I had to go through all of that to truly appreciate what I have now.

There are still things that Derek cannot say.  Technically, he is still considered non-verbal.  If he wandered away from home and the police asked him his name, he might answer his first name, but he cannot give you his last name.  Sometimes he says his name is "Mommy."  He can usually tell you he is 5 years old.  But if you ask where he lives?  Sometimes he says "Sackle."  (Axtell.)  Sometimes he says he lives in "Five." (He knows he's supposed to answer something, so he gives a response.  He doesn't pay attention to the actual question.)  He can't give you a specific address or phone number.

Some days, Derek doesn't say much of anything.  Other days, he babbles nonsense all day long.  Sometimes, he sings the same song for hours on end.

Derek can count to 5, but after that he's inconsistent.  I've heard him count to ten before, but if you ask him to do it on demand, sometimes he counts backwards and sometimes he skips numbers.

Much of his speech is echolalia or scripting.

He can recite songs from memory and say entire scenes from movies verbatim.  But when he's sick, he can't tell me what's wrong.

Time doesn't make much sense to him.  He likes watching Christmas movies in the summer and doesn't understand the concept of "weekdays" vs. "weekends."  All he knows is that certain days he has school and certain days he doesn't.

But somehow, none of that matters.

I woke up this morning to Derek saying,"So good to see you, Mommy.  Wuv you."

The words Derek can say are far more important than the ones he can't.  And the things he does, like hugging me and kissing me without being told to?  Those are the things that matter.  Non-verbal?  Whatever.  Derek speaks with his heart.

I told Derek to say cheese and he kissed my cheek instead.

Over-protective and Proud of It

I have a recurring nightmare in which Derek drowns.

Several autistic children have died recently because they wandered off and drowned.  Yet, my nightmares started years ago--before I knew that drowning was the leading cause of death for children and adults on the spectrum.

So, you can imagine my apprehension about spending an entire week at the lake.  That's what we are doing next week.  Spending an entire week at a lake.  I already take precautions. I make both of my children wear a life jacket at all times.  (The water is murky and if they went under for even an instant--finding them again would be next to impossible.  It's a big lake.)  I've also had both of them in private swim lessons.  My goal is to make sure that both of my children can swim.  And not just swim, but swim well.  Tyler is doing great in the water.  Derek?  Not so much.  He fights.  He doesn't want to put his head under water.  He doesn't like having water in his mouth or eyes.  He doesn't like having his hair wet.  He doesn't like the insecurity he feels when he floats on his back.  We are running into all sorts of problems with him.

But what else can I do???

Make Derek wear a life jacket while he sleeps?
Tether him to me so if he wakes up during the night and starts to wander, I'll know?
Put bells on the cabin door so if he leaves I'll hear him?

Yes, I realize I sound like a crazy person.  But, I don't want to be a headline in next week's newspaper.  I prefer to keep my children alive and well, thank you very much.

I used to be a competitive swimmer.  I told my friends (before kids, of course) that my kids would be competitive swimmers too, and that I couldn't understand why/how people could let their kids grow up without teaching them such a basic life-saving skill as how to swim.  Oh, if I could only go back to my former self and SLAP  her.  I cannot teach my child to swim to save my life...

And it scares the crap out of me.

So I've become an over-protective parent.  I watch my child (both kids, actually) like a hawk.  When I'm at a pool, if I'm not in the water with my kids, I'm sitting on the edge watching them play.  I'm not there to lay on a lawn chair and soak up the sun.  I'm there because I don't trust the lifeguards.  Simple as that.  (I have trust issues these days.)

But it's not just at the pool or lake that I have issues.  And I don't know when these issues started.  Is it because of Derek?  Is it because he doesn't know what danger is and I've lost him several times?  Is it because I have to hold his hand with a death grip when we cross the street or he'll try to wrangle free and end up getting hit by a car?  I am on constant alert for danger.  (It is a source of constant stress for me.) Even when Derek is not with me, I watch for cars and people not paying attention; I look for things that I know might trigger a meltdown.  I only trust certain people that I know to babysit my kids.  (A teenager can't handle Derek.  No way, no how.)  I still walk my kids to school.  I don't let Tyler play at a friend's house until I meet the parents.  I don't let my kids do a lot of things that other kids their age are allowed to do.

So maybe I'm over-protective.  Maybe I need to relax a little.  Maybe I'm in danger of becoming a helicopter parent.  But, I'd rather people accuse me of being over-protective than accuse me of not caring at all.

The Summer of M.O.M. (Millions of Memories)

I have no time to do art during the summer.  Zero.  Zilch.  Nada.  Ok,  I guess that's incorrect.  If I were Superwoman, I could stay up at night after the kids go to bed and work on stuff then.  But I'd rather sleep.  I keep telling myself, "In 2 months, the kids will be in school.  You can do art then."  I'm trying to focus on that.  I'm trying to make this summer count.  And I'm trying not to lose my sense of self in the process...

So far this summer, we haven't done anything too extraordinary.  Derek's had therapy.  We've been to a new park.  We've gone for ice cream.  We've gone to the library.  We went to the lake over Memorial Day.  We've played board games and gone for walks and visited friends.  See?  Nothing special.  But at the same time, it's been very special, because we've been making memories.  At least, I have.  I don't know if the kids will remember this stuff when they grow up, but I know I will.

I didn't even mind having both boys in my room during the thunderstorm the other night.  (At least, I didn't mind until their feet were in my face...)

What has been so amazing?
This.

Derek drew his first tree in therapy.

This.

While Derek was playing on the boat, they swam right by him!!!
 (and yes, Derek was safe--the boat was anchored and  I was right there with him.)

And this.

My boys taking a break on one of our walks.

So, I apologize for my art break.  I'm busy hanging out with 2 of the coolest kids on the planet.  What else do we have planned?  More play-dates with friends.  The Papillion Days carnival--with funnel cakes and cotton candy and ice cream and rides and fireworks.  Water slides.  The splash pad.  A squirt gun fight.  A water balloon fight.  And whatever else I can think of to keep these kids entertained...  ;)