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"