What is Success?

"I'm learning to fly, but I ain't got wings

Coming down is the hardest thing..."  --Tom Petty

suc·cess

səkˈses/

noun

1. 1.

   the accomplishment of an aim or purpose.

   "the president had some success in restoring confidence"

   synonyms:

   favorable outcome, successfulness, successful result, triumph;

   
   

   I haven't blogged in a very long time.  It's not that I haven't had things to say. I have. It's more that I've had too much to say.  When that happens I have trouble finding the words to express the way I feel.  I'm not good with words. I'm better with art.  So much has happened.  So much is happening.  And some of it is just plain hard to talk about.  
   
   I guess I'll stick to stuff going on with the project, for now.  
   
   My show at the Minden Opera House opened on November 2.  The opening reception was this past Friday.  I think, by most people's standards, the Autism Art Project can finally be considered somewhat successful.  A lot of people attended the opening.  Quite a few of them were strangers.  For some reason, that blows my mind.  People I don't even know care about what I'm doing.
   
   
   

   

   
   
   There was even a newspaper article in the Hastings Tribune about the show. I'd post a link, but for some reason I can't find it.  So I'll post a picture.  Maybe you can zoom in and read it if you want?  I thought it was a pretty good article.  
   
   
   

   

   
   
   Here's the crazy thing.  Friday, while I was at the opening, I was extremely happy.  I was "high on life," so to speak.  It was a pretty exciting night.  But the next morning, I woke up depressed as I've ever been.  And I've been trying to figure out why.  
   
   I came to a conclusion today.  Yes, I'm doing pretty well as an artist.  After 2 years of hard work, my fb page and my blog have a decent amount of followers.  And a couple of my prints have sold.  My 7 year old son thinks this is awesome.  He even asked me Friday night, "Are you famous?" 
   
   So, am I successful?  Maybe.  I no longer get nervous when I have to speak in public about my art or about what Derek and I have gone through in the past few years.  I consider it the perfect opportunity to educate others about autism.  I don't mind being interviewed by newspapers or tv reporters anymore either--for the same reason.  I finally feel like I'm making a little bit of a difference.    

   
   

   But, I don't feel successful.  Maybe I never will.  After all, I'm not really in this for the money or the fame or any of that nonsense...
   
   This project isn't just about autism awareness anymore, it's about autism acceptance.  I don't think I will feel successful until kids like the ones in this project don't have to worry about being bullied or discriminated against. Autism is everywhere.  Disabilities are everywhere.  Differences are everywhere--and they should be celebrated.  When the world can truly embrace differences, rather than use them as a reason to single people out and make them feel badly about themselves, then maybe I'll feel like a success.  But I think it's going to take a lot more than this art project to accomplish that.

Wishes and Dreams...

I had a dream last night that I met a genie.  You know, like in Aladdin?  The kind that can grant you wishes? The genie said I could have one wish.  One Wish.  I stared at him.  I didn't know what to wish for.

And then I woke up, sweaty and afraid.  I thought I had blown my chance.

I've wished for a lot of things throughout my life.  A lot of them seem pretty trivial now.

When I was a little girl, I wished that I would marry a prince.

In high school, I was a competitive swimmer.  Naturally, I dreamed of becoming an Olympian.

In college, I gained a lot of weight.  I wished to be thin.

My dreams and wishes have continued over the years.  Some of my dreams have come true.  Some have not.

Make a wish...

I've been thinking all day about what I would do if I really had a wish.  Would I wish for Derek to be cured?  No.  Would I wish for money?  No.  What about success as an artist? Or fame?  No and no.  The fountain of youth?  NO.

What I'd really like, is to be able to travel into the future and make sure that my children are ok.  I'd love to be able to see my children as adults--happy and healthy.  I'd like some reassurance that I'm not screwing up too badly as a parent.  I would love it if Derek had a job and was living on his own in an apartment, but if he was still living with me, that would be okay too.  I just want to know that he's going to be happy.  And Tyler?  I want to know that he's not going to grow up bitter and resentful that his brother got more attention than he did.  I try so hard to be the mom I think Tyler needs, but I honestly don't know what he needs sometimes.  I worry that I let him get away with too much.  I worry that I spoil him because of Derek.  I worry that I let him watch too much tv because I'm exhausted.  I worry a lot.  Can you tell?  A glimpse of him in 20 years with a great job, a wife, and a couple of kids of his own would do me a world of good.

But my time travel wish isn't a very practical one.  So here is my official wish:

To be able to enjoy the here and now, without worrying about the future.  I get so preoccupied with time, schedules, and trying to make sure I'm doing what I'm supposed to in preparation for tomorrow, that I forget about today.

And when you've got kids like this around?  Moments matter.  Don't miss them...

Trial, Error, and a Little Bit of Luck

I'm going to be completely honest here.  I threw away my "What to Expect the Toddler Years" book a long, long time ago.  I'm pretty sure I did it the week Derek was diagnosed.  Tyler was no longer a toddler and nothing in that book was relevant to Derek, so...into the trash it went.  I should have used it for kindling.

Instead of reading about what my son "should" have been doing, I devoured books about autism.  But, no matter how many books I read, there were no manuals that really, truly prepared me for being a parent--not to Derek or Tyler.  I had to wing it.  Everything I've learned in the past 7.5 years, has been through trial and error.  I make a lot of mistakes.

Today, after school, Derek was downstairs working with one of his ABA therapists.  Tyler must have been bored, because he wanted to go down and visit them.  He even said, "The therapists don't mind when I come in."  I told he couldn't bother them and he started crying.  Actually, no...he started sobbing.  I was shocked.  I remember thinking, "What in the world is going on here????"  I finally got him calmed down and had a little discussion with my son.  

I didn't expect it to break my heart.    

I explained to Tyler that, even though it seems like Derek is getting special attention from the girls that come to our house (4 different girls rotate Monday-Thursday), the girls do not come to play with Derek.  They are coming to work with him and give him extra help with the things he is struggling with in school--like writing his letters and his numbers and drawing pictures. We are paying them to come, and in the two hours that they are there, Derek has to get his work done.  The girls don't have time to play with him.  

Tyler is getting to the age where he is finally realizing how different his brother is.  He gets frustrated that Derek can't talk and play with him.  He has a hard time understanding that Derek struggles with things that have always come easy to him.  And lately, he's been telling me that things "aren't fair."

Today, with tears streaming down his cheeks, my son told me, "Sometimes I wish Derek didn't have autism!"

I pulled Tyler into my arms.  I couldn't say anything.  I couldn't agree, because then I'd be wishing Derek was a different child.  And I love Derek--exactly the way he is.  So I just hugged Tyler tight, knowing that what he really needed was attention and reassurance that he was loved.  My eyes filled with tears and I didn't try to wipe them away.  

I told Tyler, "I can't imagine how hard it is to be Derek's brother.  But you're doing an amazing job.  I'm so proud of you."  And then I asked him, "You know how much I love you, right?"

"To the moon and back," he answered.  

Trial, error, and a little bit of luck.

The Long Walk

Whenever we go to Lake McConaughy, we stay at a small house owned by my in-laws.  It is a cute little house, right near the beach.  When we want to go swimming, we walk about 1/4 of a mile (maybe 1/2 mile at the most) down to the water.  It's an easy walk--down a hill, through a small field of sunflowers, and across a stretch of sand and stones.

For most people, this walk would take maybe 10-15 minutes, at the most.  A lot of people that live in the area don't even bother walking.  They drive trucks, golf carts, ATVs, and even tractors so that they don't have to carry towels, chairs, and other beach gear back and forth.  I don't have that option.  Derek refuses to ride in anything "open," so unless his grandmother brings her truck with her, we walk.

Sometimes, on really hot days, I think it would be nice if Derek would consider riding on the ATV.  But most of the time, I don't mind the walk.  I know Derek enjoys it.  Instead of taking 10-15 minutes to walk down to the lake (or back up to the house), it usually takes us at least 30.

There has been a blog post circling around called  What the Dying Want Us To Know About Living.  In it, the author addresses what her mother and grandmother both said on their death bed--to slow down.  This quote especially, stuck with me:  

 "My mother and grandmother were telling me loud and clear that as we live our lives, we have to stop running and chasing what we think leads to happiness, and slow down before we rush past the very thing we'll wish we had more of at the very last hours of our days."  --Alexandra Rosas

When I read the post, I smiled.  It didn't take the death of loved ones to teach me to slow down. All it took was a 5 year old boy who refused to let me put him on an ATV.  Since Derek has his own time-table (he can't be hurried), I have never really been in a rush to get down to the beach.  If I was in a hurry, I could easily have missed out on something just as enjoyable--the walk down to the beach.

On our walks, I let my son take as long as he wants to.  I just enjoy watching him explore.  He smells the sunflowers.  He looks up at the brilliant blue sky and the white fluffy clouds.  He talks to the insects.  He drags his feet in the sand and makes footprints.  He examines the charred remains of old bonfires.  He picks up sticks and pokes at things.  Derek doesn't just walk.  He walks.  He doesn't miss a single thing.  And because of him, neither do I...

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.