"Look At Me"

"Look At Me"
monotype and screenprint

Wednesday, January 29, 2014

A Glimpse

"From the outside looking in you can never understand it.

From the inside looking out you can never explain it." --Unknown

I am a stay-at-home-mom who does art on the side. My life, for the most part, revolves around my children. From the moment I wake up in the morning until I close my eyes at night, I am thinking of them. Yes, I think of other things too...but they come first.

Whether I want to or not, I think about autism. It is always there--every minute of every day. It's part of Derek's neurology. It's who he is. And I love who he is. But, let's face it--it's not something that affects our lives once a month, like a menstrual period. Autism impacts everything. If I want to go to the store or on a trip or even out to dinner, I have to think about how it is going to effect Derek and if he can handle it or not. In a lot of cases, the answer is no. For instance, I've been wanting to visit my grandmother in Rhode Island for a while now. She's never met Derek. But could he handle a plane ride? Or a 7 day car trip? I'd like to be optimistic and say yes. But, realistically--the trip would probably be a nightmare for him. 

I'm going to be completely honest with you here. When Derek was first diagnosed, I did a ton of research online. A TON. I read every article I could get my hands on. I read about possible causes. I read about possible cures and treatments. I read about vaccines and chelation and DAN doctors and mercury poisoning and Jenny McCarthy and GFCF diets. I was kind of obsessed. I tried a lot of things. I wanted to do everything I could for my child. The only thing that has really helped him is time, patience, love, therapy, and my attitude change--that he is amazing the way he is and doesn't need to be cured. Now, my goal is NOT to make him pass as "typical", but to help him navigate this world the best he can.

With a child like Derek, it's hard not to be obsessed with autism. Especially when there are daily news reports of autistic kids being bullied and abused, escaping from schools, and drowning. It's a reality most parents don't give much thought. I have nightmares about it.

I'll give you a glimpse at what life is like with a developmentally delayed, autistic child. (Please, don't think I'm complaining here. I'm not. But, I'm also not going to sugarcoat it. I don't do "fakebook." This is my daily life.) This very morning, I woke Derek up. I helped him go to the bathroom. He's 6-years-old. He still wears a diaper at night. (Yes, a diaper--not a pull-up. Pull-ups don't fit him well and they tend to leak. I like sleeping. I'm not about to deal with wet sheets in the middle of the night). He went #2, so I helped him wipe. He needs help with that still, too.  

*Oh, and by the way, Derek sleeps in my bed. I've mentioned before that he has Cyclic Vomiting Syndrome, right? About once a month, he wakes up in the middle of the night vomiting uncontrollably. He continues vomiting every 10 minutes or so for 3-5 hours. He sleeps in my bed because A) I'm terrified he'll asphyxiate on his own vomit and B) so that I can help him get to the toilet and minimize the mess. When he vomits, he's seriously like the kid on the Exorcist movie. Somehow, he sprays everything. It's scary as Hell.

Derek during one of his CVS episodes.  

Back to today...I helped Derek change his clothes. He is not capable of dressing himself entirely (yet). He needs help with buttons and zippers and getting his feet in the right holes of his pants--especially if he is tired, which he was this morning. I also helped him get his socks and shoes on.

The entire time I was helping him, Derek was scripting a scene from Despicable Me--I'm pretty sure it was the scene where Gru steals the moon, because he was talking about the shrink ray. Just FYI.

Then came breakfast. Oh, breakfast. Food is a challenge. Derek hates to eat. He has Sensory Processing Disorder (most people with autism have SPD) and can only handle certain textures of foods. He likes dry, crunchy foods and that is about it. It doesn't leave us very many options. Today, I got him to eat a handful of pretzels for breakfast. That was it. Some days, he eats a cookie or a granola bar. I consider it a success if I get him to eat anything at all.

Then I helped him get his coat on and I drove both of my kids to school.

Today was one of the rough days. Derek didn't want to go to school. He couldn't tell me why. (Communication is still sketchy. He's talking more and more, but answering questions is hard.) I had to carry him into the building. He fought tears the entire time. But, at least he wasn't sobbing. Some days, he is.

Most kids go into the auditorium until class starts. (I drop Tyler off there.) Derek can't handle the noise and the crowd, so I take him directly to his classroom. I leave him with his aide, and say a little prayer that he has a good day.

I have a few hours to nap, do housework, work on art, and do errands before the kids come home. I feel like a chicken running around with my head cut off. Some days the kids have dentist or doctors appointments. Lately, one or both kids have had to stay home sick. Since Derek has Cyclic Vomiting Syndrome, he is home sick a LOT. I've cleaned up more vomit in my lifetime than I ever thought possible.

After school, Derek has ABA (Applied Behavior Analysis) therapy. It's every single week day. His therapists help him with the things he is struggling with in school, like writing the ABC's and counting past 10. They also help him with life skills, like eating with silverware, brushing his hair, etc.

This is when I cook supper and help Tyler with his homework.

I'll spare you the details of our supper, bath, and bed time routine. I'll just say that Derek needs help with all of it, and if I get him to eat anything other than dry cereal it is a bloody miracle.

I fall into bed every night exhausted. I run through my day in my head.

I wonder if I'm doing everything I can--for both of my kids. 

I feel like I should be doing more.

I could always do more.

There's a food therapy program at Munroe Meyer.

I could try to get Project Lifesaver available in our county. (Project Lifesaver provides tracking devices for people with autism and Alzheimer's, in case they get lost.)

What about sports? Gymnastics might be good. Or swim lessons at the Y?

Maybe I am obsessed.  

The only way for me NOT to be obsessed is if I walked out on my children and my life.

Obviously that's not going to happen.

Maybe, in some cases, a little obsession is a good thing.

Monday, January 13, 2014

Stealing From an Artist

A drawing of my son...

"Every portrait that is painted with feeling is a portrait of the artist, not of the sitter."  --Oscar Wilde

I "officially" started this art project in April of 2011.  When I started, I had only two pieces completed.  Both of them were about my own son.  One of them was completed just a few short months after Derek was diagnosed.  It was my way of coping with everything I was feeling.  I didn't know any other autistic children. When I started meeting other families, I literally had to beg them to join the project and let me do portraits of their kids.  The first kid I met was a boy named Aiden.  I thought he was adorable from the start.  He was only a couple of months younger than Derek. They had similar traits (they both liked to spin the wheels of cars), yet they were sooooo different---and it fascinated me. Luckily, his family lives only 30 minutes away, so I see Aiden and his family often.  I've become good friends with his mom and I love seeing the progress he's made.

Derek, me and Aiden at the pool.  

The kids in this project are not just "artwork" to me.  And I've never considered the portraits a "job."  These kids are real, live people.  I have met many of them in person.  Some of the kids have been referred to me by friends and relatives.  Some I have met through other blogs.  But most of them, especially the ones who joined the project in the very beginning, I consider extended family.  You have to understand, I have been talking to the parents and following these kids for almost 3 years now.  I don't stop talking to their families once the portraits are done.  We stay in touch.  I have celebrated first words and potty-training victories right along with the families.  I have watched the kids graduate from preschool.  I have cried with the parents during medical procedures and dental appointments and IEP meetings.  I've cried even more when I found out a sibling protected their brother or sister from a bully or a friend held a hand on a field trip.  The way I see it--we are all in this together.  And if you can't laugh and cry and celebrate together, than this journey is going to be awfully long.

As most of you know, all I have ever wanted to do with this project is show the world how I see autism:  as something beautiful.  Yes, it is difficult and there are days when I want to throw in the towel.  If I wanted to show the world the ugly side of autism I could make prints about meltdowns and head-banging and the like.  But, I am not ashamed of my son and never will be.  Yes, autism can be hard.  But it is also incredible.  My son makes me laugh every single day. He is amazing.  So are all of the kids in this project.  They deserve to be portrayed as such.

This project has grown to almost 50 kids.  FIFTY.  That's way bigger than I originally intended. (I'm thinking about making 50 the cut-off mark.  50 is a nice, even number, right?  I'll have my work cut out for me for at least another 2 years or so.)

Ok, so why am I telling you all of this?

Because unless I am horribly mistaken, someone tried to pretend that my artwork was hers.  We are talking plagiarism, folks.  I'm saying that I think someone used my blog and my facebook page and my gmail account to say that my artwork was hers for a college class.  I don't really know how this could have happened, but people get away with all kinds of crazy stuff online these days.

I'll tell you what I know.

I received a bunch of very strange emails to my autism art project gmail account in the past few months, addressed to another person.  (I didn't open them originally, because I thought they were spam.)

All of the emails came from the same university.  One came from the school's alumni foundation.  One came from a specific teacher and had an attached document with an actual grade for an independent studies class that the woman (I?) had taken.  She got a B in the class (what's up with that???)  I even had a blank email from the woman herself, and I'm guessing she sent it to my gmail to either a) confirm that it was her account or b) see if I even checked that email account anymore.

Oh, and according to that document, it wasn't just a Bachelor's Degree that the girl was getting her degree in. It was a Master's of Arts Degree, which means she had to have some talent to get as far as she did.

I have emailed the college four separate times in the past few months to find out what is being done in regards to the possibility that the woman plagiarized me.  I received only one email back, saying the following: 

This is to confirm that I received your email on Tuesday and I have forwarded it to The Senior Tutor for further investigation.  I can assure you that we are taking this matter very seriously.  I will contact you with the outcome of the investigation as soon as possible.

This was on November 28, 2013.  An investigation shouldn't take two months.  I don't know what else I can do.  (Probably nothing.) Obviously, the school doesn't think it's as big of a deal as I do.

These kids matter to me.  They are my life.  Autism is my life.  I've been eating, sleeping, breathing it for over 4 years now.  It's all I think about most days.  So, someone tried to pretend my artwork was hers.  Big deal, right?  People keep telling me it's a compliment.  No. Just, no.  Maybe it seems that way to some.  But I keep thinking about the kids.  I don't know if this other woman has an autistic child or not.  Or if she's even been affected by autism at all.  I don't know her.

But I find it highly insulting to think that someone who might know nothing about autism at all could pretend to do a project like this.

When someone steals artwork, it is not like stealing a television or a car.  This type of robbery makes you feel very vulnerable and exposed, because they are not just simply stealing paint that has dried on a canvas. They are stealing your expression and your view of the world.  I communicate my thoughts and feelings through my art.  A tiny piece of myself goes into every portrait.  These kids fill me with hope and inspiration, because most of them have overcome more in just a few short years than I ever will.  My hope is that people who know nothing about autism will see my pieces in a gallery and it will open their eyes just a tiny bit.

Plagiarism is real.  It is alive and well.  And when it happens to you, it hurts.

Thursday, January 9, 2014

The Not So Little Things

It is easy to get caught up in the day to day hum-drum of life.  Especially when you're exhausted.  One day blurs into the next and nothing ever seems to change.  But, one day, when you stop and look back, you suddenly realize that everything has changed.  

Little things happen every day.  But, as you know, when you have a kid with special needs, the little things are never little.

I don't have any big, monumental stories to tell you.  At least, none that will smack you between the eyes and make you say, "Oh, wow--Derek did that???" (No, my son didn't memorize the Gettysburg Address.)  But I do have lots of "little," every day stories.  In my book, they are just as good.

Yesterday Derek didn't want to take a bath.  So I told him I would blow bubbles for him.  It was one of the best nights ever.  He laughed and laughed and tried to pop the bubbles with his fingers, his toes, and even his face.  I reveled in the moment.  Just two years ago, Derek hated baths.  I remember days of having to chase him around the house and carry him to the bath, kicking and screaming.  I'd wash his hair while he cried big, elephant tears.

My son loves baths now.  And bubbles.  (A little thing that's not so little.)

Then today, when I dropped Derek off at school, he greeted a girl in his class.  He said hi to her without any prompting.  And when he saw his buddy J arrive, he got excited and said, "There he is!"

Derek is making friends.  (Definitely not little.)

The other day I forgot to buy apples, and Derek always has an apple for lunch.  (It's one of the only fruits/vegetables he eats.)  So I packed a box of raisins into his lunch box and hoped for the best.  His para told me later that he was thrilled and exclaimed, "I like raisins!"

Derek is talking more.  And more.  And he's getting better about adapting to changes!  (Not little.) 

Yes, we still have a long way to go.  Derek still thinks that every day is Wednesday (it's like Groundhog Day!)  He also told me he lives in December.  Since his birthday, he's been confused about his age.  And he can't count backwards from 10 to save his life.  (Six, six, four, eight, six!)  But I remember where we were four years ago.  I remember where we were just two years ago.  He's come a long way--a couple steps here, a couple steps there, a hop, a skip, a spin, and of course, a hand-flap or two.