A Bear

I have a story to tell you.  It's kind of a cheesy story, so "bear" with me...  :)

Last night when I was getting Derek ready for bed, I remarked that I'd had a rough day and that I was ready to go to bed too.

Derek looked at me and asked, "How come?"

Derek has been asking more questions lately, so this shouldn't have come as a shock to me--but it did.  My son wanted to know what was troubling me.  It sent shivers down my spine.  He'd never asked anything like that before.

And THEN, when I was tucking him into bed, he asked for his bear.  So I handed it to him and he looked at me for a moment.  Then he got out of bed and selected another bear.  He climbed back into bed and gave me the bear, saying, "Here ya go.  Mommy.  Bear."

I asked him, "Do you want me to have a bear too?"
He said, "Yes!  Give hug."

And together we hugged our bears until Derek was asleep.

Why am I telling you this?  Because it occurred to me, as Derek was hugging his bear and struggling to keep his eyes open, that if I could go back in time to the day Derek was diagnosed, I would show my former self this exact moment in time.  I would comfort that weeping woman, who felt so helpless and afraid, and tell her this story.  I would give her hope.  Four years ago my son had no words.  Four years ago my son didn't know how to show compassion.  Four years ago, life was very different.

Today, my heart is full of joy and wonder.  As difficult as the journey has been, I would not change a thing, because simple moments like this would not be as miraculous as they are now.

My son gave me his bear last night.  But he has given me so much more than that...

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.

"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...  ;)  

The Ties That Bind

Derek's 1st Christmas

When Tyler was about two years old, I put him down for a nap and left the room.  About 10 minutes later, I heard a strange scraping noise.  I stuck my head into his room and found my sweet little boy using the end of a cheap watercolor paintbrush to scrape lines into the walls.  I was sooooooo mad.

Today, I started painting Tyler's room a dark red color.  While I was painting, I came across the scrapes on the wall.  Somehow or other, that toddler is now a 7 1/2 year old man-child.  In the blink of an eye, my baby grew up.

I swallowed the lump in my throat and painted over the marks.

I remember so little of Tyler's toddler years. I feel terrible about that.  Derek was born when Tyler was still in diapers, so all of my memories are foggy from sleep-deprivation.  Then when Derek was diagnosed with autism, Tyler changed--overnight it seemed.  He became a serious, sensitive child.

Or maybe it was me that changed.  I'm not sure.

Time is an interesting thing.

In the past few years, a lot has happened.  People have graduated from high school and college.  Family members and friends have gotten married.  Lots of people had babies.  (My brother had twins.  My sister had two little boys.)

Yet, even though my mind registers that all of these things are happening, time seems to have stopped for me.  Oh, I know that sounds ridiculous.  I mean, I can look at pictures and see my children growing up right before my eyes.  Yet somehow, I'm stuck.  It's like there is an invisible rope tethering me to 2009--the year Derek was diagnosed with autism.

(Did you ever play tether ball at school?  When I was in elementary school, there was one on the playground.   A ball was attached to a rope and the rope hooked to a pole in the ground.  The goal was to hit the ball hard enough with your hand that the rope would wind all the way around the pole with one hit.  I was never very good at tether ball.  Sometimes I hit the ball and it would swing around the pole and hit me in the head.  I should have learned something from that...)

Last Friday was the last day for one of Derek's therapists.  He's had a lot of therapists come and go.  So it shouldn't be a big deal to say goodbye to one of them, right?  Wrong.  The women that have worked with him became like family members to me.  And the one that left Friday?  She was the last of the original four I hired.  The original four were with me during the hardest years, when Derek didn't understand language.  I don't know if they realized it, but they knew me during the most formative years of my life.  They have seen me crumble and fall apart.  They have seen me cry.  But best of all?  They saw me rebuild myself--stronger than I ever believed possible.  When I say goodbye, I am letting go, once and for all, to the person I used to be.

It's time.  The rope is unraveling, whether I want it to or not.  Derek is no longer 2.  Both of my boys are doing amazing things and it's time to focus on that.  I don't want to be tethered to the past.  It is full of pain and uncertainty.  When I think of the future, all I feel is hope.  I owe a good chunk of that feeling to his therapists.  They will forever be Family.

I wonder if the new people I hire will realize how awesome my son is.  I wonder if they will understand why I sob like a baby on his first day of kindergarten, or on a day when he accomplishes something huge.  I wonder a lot these days.

Snippets From My Mother; My Inspiration

Me at 3 months old

May 27th,1978
Beth stopped eating at 5:30 a.m. and by 1:30 p.m. I was calling doctors.  Talked with Dr. S* and he said she probably had indigestion.  For some reason, perhaps because I feared an ear infection or because Beth had even stopped sucking, I called the Hanscom Clinic and they said bring her in.

People tell me that I'm a good mother.  When they do, I smile and nod and say thanks, but I don't really believe them.  Why?  Because I had a great mother.  I compare myself to her.  She was a military wife.  (Military wives are tough cookies.  They are alone a lot.  And they live in fear that their husbands will never come home.)  She took care of me, my sister, and my brother.  She read to us and played with us.  The house was always clean.  We had home-cooked meals and snacks (I didn't know what a Twinkie was until high school).  She drove us to music lessons and swim practices and doctors appointments...

After checking her out, Dr. H called the pediatrician to come in.  After he checked her out they took an X-ray and thought something was the matter with her intestines so they sent us to Emerson Hospital.  There, after a Barium X-ray, they discovered a tumor and we were sent to Mass. General.  

I never really noticed what my mother did...until I became a mother myself.  She made motherhood look easy.  Every single time I have taken either of my children to a doctor's appointment--whether it was just for a routine check-up, for an MRI, for an EEG, or for surgery--I think of my mother.  I think, "If she did this, with a potentially dying baby, I can too.  My child is not dying.  He does not have cancer."  

We were admitted Sunday at Mass. General and Monday and Tuesday Beth had an Ultrasound IVP (Intravenous Pyelogram) X-ray.  (It checks kidney function.) She was scheduled for surgery Wednesday at 2 p.m. and after starving her from 5 a.m. they cancelled surgery at 2:30 p.m. and we got to do it all over again on Thursday.  I thought I would keel over.  She was finally operated on from 4-6 p.m. and they found a neuroblastoma (cancer) in the retrorectal area.  It had pushed aside her rectum (inability to have normal bowels) and in a few more days she wouldn't have been able to urinate.  

She must have been tired.  I'm sure she was lonely a lot.  We moved every 2-3 years, so it must have been hard for her to make friends.  Yet, I don't remember hearing her complain.  Maybe she complained to others--but she didn't take it out on her kids.  We were her priority.  She taught us that possessions and material things were not important.  A house is just a house.   As long as you have your family with you, you can live anywhere.  And we did.  We once lived in an Air Force Base hotel in Massachusetts for over a month.

June 25th, 1978
We can't get over the change in Beth since the operation.  Of course, she is a month older, so that contributes to her abilities to smile a whole lot, to learn to laugh, to kicking her feet, and generally being happier.  She is "talking" a lot, too.  

She had her check-up June 20th with both doctors and everything appears normal.  She has only gained 6 ounces since May 16th, but she grew almost 2 inches.  The doctor said she was constipated for about a month...so she had lots of discomfort, gas, cramps, etc. and that contributed to her being so fussy.  I wish we could have discovered her problem sooner.  The poor kid has been through a lot.  

This whole thing makes one realize the fragility of life.  

My life has turned out to be much different than my mother's.  
I'm not a military wife.  My family has lived in the same house for almost 8 years.  
We live in a small town where everybody knows each other.
Instead of music lessons and swim practices, my days revolve around therapy schedules, IEP meetings, and trying to get my child to eat.  
My house is never clean. 
And frozen pizza and chicken nuggets are a staple in my house.  Home-cooked meals are rare.

The only traces of what she has been through is the bald hair around her head from being tied down for 5 days in the hospital and her scar.  She is also small (4 1/2 months old and weighs 12 lbs).  

Her brother is scared of being left now and afraid of having a tumor or Beth getting another one.  Poor kid--he understands but not enough to forget about his fears.  

After my cancer scare, I was a relatively healthy kid.  But does one ever really recover from a scare like that?  I doubt it.  Cancer is Cancer.  When your child has a brush with death, or health problems of any kind, it changes things.  It changes you.  Nothing is ever taken for granted again.  I never thought I'd be able to say that autism and cancer have any similarities.  But they do.  They make you cherish the little things in life.  

Mom, this post is for you.  I'm sorry if I took you for granted as a kid.  I never realized how much you did--how much you continue to do for everyone you love.  Happy Mother's Day.  


*Names have been changed to protect the privacy of doctors.

Autism Art Project Celebrates 1,000 Ausome Things #AutismPositivity2013

I used to think that preschool graduations were ridiculous.  That was before Derek.  That was before autism.

My perspective has changed.

They say a picture is worth 1000 words.  My son doesn't have 1000 words.  By definition, Derek is still considered "non-verbal."  Does that matter?  Not at all.  Derek has found ways to communicate.  If he can't find the words verbally, he'll take my hand and show me what he wants or point to things. If you ask me, his smile alone speaks volumes.  So do his eyes.

When I look at this picture, I don't see a little boy with a cheesy grin in a cap and gown.  I see a million other moments that led to this one, great moment.  I see a 2-year-old struggling to learn how to use PECS.  I see a child with so many sensory issues that putting a hat on his head hurt him.  I see the same boy with tears streaming down his cheeks on his very first day of preschool.  And I see a child with big, shining eyes chasing after bubbles and finally saying his first word, "bubba."

The cap and gown are symbols of how much Derek has accomplished; how much he has overcome in the past few years.  My son learned more than just the ABC's and 123's in preschool.  He discovered how to interact and play with other children.  He figured out how to follow directions and ask for help.  He learned how to dress himself and use the toilet on his own.  I could go on and on...

I couldn't possibly be more proud of this little boy.  

He deserves a cap and gown.
He deserves cake and ice cream.
He deserves a party.
He deserves all that I have to offer as a parent.
He deserves every opportunity that the teachers and the school can provide.

He deserves the world.
(Because he's ausome.)

Put on a Happy Face

Being bipolar has its ups and downs...

That was my attempt at a joke.  I do still have a sense of humor.

But I'm not going to sugarcoat things.  I'm writing this post because a lot of autism parents struggle with depression.  I'm kind of an expert on depression.  I've been battling it since I was nine.  Most of the time, I have a pretty good handle on things.  I take my medication, I see my doctor when I am supposed to, and I fool myself into thinking that I have things under control.

(Control.  That's a funny word.  Does anyone really have any kind of control over their lives???  No.  Life changes on a dime--especially in Autism Land.)

Something happens.  Something unpredictable, something unplanned, something that throws my life completely out of whack...and I don't know how to handle it.  I am unable to function.  I begin to spiral into darkness, and there is nothing, and I mean nothing, I can do to stop it.

Being manic can be fun.  I get so much done it's scary.  I can stay up for 3 days straight and I do artwork all night and I clean the entire house and I talk a mile a minute and I do crazy things like go on spontaneous road trips and jump out of airplanes (yes, yes I did).

Depression is another story.  When the high ends and I crash and burn, it isn't pretty.  I'm very rarely manic.  I am diagnosed as being bipolar II, which means I have more depressive episodes than manic ones.  I've been told I'm hard to live with.


*Just a sidenote--these episodes happen very rarely now, since I take my medication regularly, like a good little girl.

Want to know what happened this month?  It was something pretty stupid.  But it was enough to scare the crap out of me.

Derek got sick.  (He gets sick a lot, so it really shouldn't have been enough to set off an episode for me.  However...)  Derek had a low-grade fever for 9 days.  I had to take him to the doctor twice because he developed an enormous lymph node on his neck that seriously freaked me out.  It looked like a tumor.  So, of course, I thought my son had cancer.  (Have I mentioned that I had cancer as a baby?  So I have an irrational fear that my children will get cancer as well.)  Derek was miserable.  It took antibiotics to get rid of that monster.

The giant lymph node

After that, I had trouble recovering.  I went into what I call a "funk" of depression.  I just couldn't shake it.  Anything and everything stressed me out more than normal and I cried at the drop of a hat.  Simple things became difficult.  It took all of my energy to get out of bed in the morning and get my kids to school on time.

And, then a few more things happened.

I was summoned for jury duty.  (I eventually got out of it, but it took a trip to the courthouse, several phone calls, a doctor's note, and a letter from me to the judge.)

I had to give a speech at an award's ceremony.  

I attended an autism conference.

All of these things would normally be no big deal.  Some of them would actually be fun, if I were my "normal" self.  But when I'm fighting depression and barely making it through each day?  These things are overwhelming and exhausting and terrifying.  That's what happens when you have a mental illness.  Even simple, every day events like picking up your kids from school and making dinner become challenges.  All I wanted to do was sleep.  

I read about things like the bombing at the Boston Marathon and the explosion in Texas and the death of Gavin, the little boy from over at Chasing Rainbows and I think, What is wrong with me???  I have no right to be depressed.  I have it so much better than so many other people.  I need to count my blessings.

Having a chemical imbalance in the brain sucks.

I don't know what it's like to be autistic.  But I do know what it's like to be bipolar.  And being the bipolar mother of an autistic child is HARD.

What am I trying to say?  That it's ok to cry.  Cry behind closed doors if you have to.  Cry in the car.  Cry in the shower.  It doesn't matter.  Nobody is perfect.  Nobody has it all together.  Even the people you think have it all together--they don't.  There is no such thing as a perfect parent.  The best thing you can do is just take care of yourself first, and then love your children to the moon and back.

And here is the most important thing--if you think you need to see a doctor or therapist, don't be afraid to ask for help.  Do it for your kids, if not for yourself.  They need you.  (If you don't have kids, do it for your spouse, or parents, or somebody!!!)  If you end up needing medication--it's nothing to be ashamed of.  There are millions of people on medication for mental illness.  There is no shame in having a mental illness at all!!!  It's just something we don't talk about.  But I'm talking--because someone out there is listening.

  

Autism is a Masterpiece

What does autism mean to me?

There are so many answers.  I could talk about my son.  I could tell you about my day to day experiences with a five-year-old little boy with big brown eyes and a beautiful smile.  I could also tell you about his struggles to communicate.  And how far he has come in the past four years.  

Instead, I'm going to tell you what autism means to me as an artist.  

I don't think autism is a puzzle piece.  I think Autism is a Masterpiece.

Let me explain.

For almost two years now, I've been making artwork about kids on the autism spectrum.

When I'm trying to create a new print about a person, I do everything I can to capture their personality.  I find out what they like to do.  If possible, I meet them in person--several times.  I know what you are thinking--that spending such a short amount of time with a person doesn't really allow me to see what they are really like.  But children, especially autistic children, are honest and open.  They don't try to hide who they are.  I LOVE THAT ABOUT THEM.  

Every single child (and adult, for that matter) that I have met, is unique.  

Sure, some of them do some of the same things, like line up their toys or play with the wheels of cars.  But some like pizza.  And some only eat dry, crunchy foods (like my son).  Some love water (swimming, baths, sprinklers, etc.) and others can't stand to be wet.  

If you've met one person with autism, you've met one person with autism.  It's true.

  

I don't know how my son's mind works.  But this is how mine works:  I see the world in color.  Everything is a painting.  Everything is beautiful, if I look at it the right way.

If you shine white light through a prism, it refracts and separates the light into seven colors:  Red, Orange, Yellow, Green, Blue, Indigo, and Violet.  Every single color is important.  Every single color is beautiful.  But, in order to make a rainbow, you need all of the colors.  

I tend to think about people in the same way.  We are rainbows.  We all have different aspects of our personalities that make us who we are.  Give each of those traits a color--for example, say that "compassionate" is the color pink.  And "patience" is the color blue.  "Determination" is red.  I think about all of this when I am working on a portrait.  I ask myself, "What colors should I use?" to accurately capture someone's personality.  I usually end up using a lot of colors.  And since I'm a printmaker, I can even create new colors just by overlapping the layers.  

And then I try to do the impossible:  I use all the colors of the rainbow to recreate a 3-dimensional, living person on a 2-dimensional piece of paper. 

I have not created a masterpiece yet.  It is an elusive goal, that I will never reach because I consider the person to be the masterpiece. 

In a way, I'm like the artists in the past who studied and copied the works of the Old Masters.  They did it to learn from the best.

So do I.  

Through art, I can show the world what autism really is.  I can give names and faces to the numbers.  I can show the world how I see autism:  as a beautiful, colorful masterpiece.

"Aiden:  Spinning"

The Speech (and the Award)

Okay, so some of you have been asking about the award I won.  More specifically, about the speech I gave and what I said.  

First of all, I will tell you right now that I hate giving speeches.  With a passion. I had to give one at one of the first art shows for this project and I bawled.  I barely made it through the speech.  I have a hard time talking about things I really care about.  And I care about Derek and the other kids in this project a lot.

So, I was determined, when I found out that I won an award and had to give a speech, that I would not cry this time.  Easier said than done.  

My table

I'll give you a little background about the award.  It was given to me by Moonshell Arts and Humanities Council for having a show in Hall County, Nebraska.  That was one of the requirements.  That I either live in Hall County, that I showed work in Hall County in 2012, or something to that effect.  I had a show in Alda, NE (part of Hall County) last winter.  So I qualified for the award.  And my wonderful friend Brad nominated me.  That was all it took.  

To read more about Moonshell Arts and Humanities Council, click here.

Last Saturday night, I attended the awards ceremony.  12 other wonderful people received awards.  I heard some very inspirational stories--and some great speeches. 

This was my speech, give or take a few words:  

First of all, I just want to say thank you.  

Most parents take certain things for granted.  They take a newborn baby home from the hospital, expecting that child to do certain things as they get older.  

Like coo.

Clap their hands.

Wave. 

Point.  

Make eye contact.

Say "mama" and "dada".

My son did none of those things.

This project really began in 2009, when my son Derek was diagnosed with autism.  He was not even two years old.  He sat at a table for hours driving his toy cars, and I wondered what was going on in his mind.

We put Derek in an intensive therapy program called ABA--Applied Behavior Analysis--and, although the road has been long and bumpy, my son has made great strides.  He will enter kindergarten in the fall, with the help of a full-time aide.

I began making art about my son soon after he was diagnosed.  It was my way of coping with all of my emotions.  I came up with the idea for the project when I met another family with a little boy named Aiden.  I realized  wanted to make art, not just about my son, but about other kids on the spectrum as well.  I wanted to show the world how beautiful autism is.  

I had one big problem though--I was an artist without supplies.

So, I decided to see if other people would be interested in my project.  I launched it on a website called Kickstarter, asking for donations to help me get started.  

I never expected the amount of support I received.  The city I live in threw a pancake feed.  Friends, relatives, and complete strangers visited the website and donated money.  

Over $6,000 was raised.  I had enough to buy a small Takach etching press.

Since then, the project has grown in ways I never could have predicted.  In less than two years, I've completed 25 pieces.  There are now 40 something kids in the project, from 19 different states.  And through my blog and fb page, I connected with other parents, some autistic adults, and I've met lots of the kids.

And the project is still growing. 

At some point, I plan on writing an illustrated book about this project, and all of the kids involved.  I want to put names and faces to the numbers.  

So, thank you for your support and for this award.  

And a very special thank you to my son, for being my inspiration.  

Brook and The Special Olympics

Brook practicing

This is Brook.  His family lives about 30 minutes away from me and I've met him on several occasions now.  The monotype I am currently working on is about this incredible young man.  Brook is involved with Kearney Therapeutic Horseback Riding Program.  KTHRP is a non-profit organization "dedicated to fostering the physical and mental well-being of individuals with Special Needs.

According to Brook's mother, horse therapy has "helped Brook work on his focusing skills. Also he has become responsible for the care of the horses, ie grooming, brushing, cleaning hooves, and learning how to place the saddle.  (It has) also given Brook a sense of pride and accomplishment in working with the horses and competing in the Special Olympics.  Because of the level of focus required to ride the horses, Brook is very calm and quiet when riding." 

I had the opportunity to watch Brook compete, and it was incredible.  My son Tyler came with me, and he loved the experience just as much as I did.  The Special Olympics are very inspirational.  And I was intrigued by the "silent clap."  Whenever a new rider was introduced before performing the audience raised their arms silently to cheer.  They did this again when the rider was done.  I was told they do this so the horses don't get spooked, but I couldn't help but think it was perfect for autistic individuals who are sensitive to sound.  (See picture below.)

If all goes well, I'll finish my print of Brook this week or next.  Stay tuned.  :)

Anyway, I think it's a wonderful program, and I hope Derek will be able to compete some day as well.  I'll be silently cheering as loud as I can. 

Getting ready to compete

Tyler had the chance to sit on a horse also.

Competing

About to compete again.

Tyler watching from my lap.

The silent clap.

Brook with his medal