Milestones and Miracles

Babies develop at different rates.  Everyone knows this.  Yet at the doctors office, at the well-child checks they still go through a check-list to see whether your child is developing "normally."  I didn't know it at the time, but the doctors are checking for "red-flags" for autism or developmental delays.  Evidently, babies "could" be clapping at 7 months.  They "will probably" be clapping at 8 months.  They "should be" clapping at 9 months.  And they are "supposed to be clapping by 11-12 months.  This was one of the BIG milestones my son missed.  Among others.  He also didn't point, or wave, or say Mama or Dada or respond to his name.

I vividly remember the day my son clapped for the very first time.  He was 2 years old.  I'd been working with him for months.  Every time he did something, like give me eye contact, I'd clap for him.  Then I'd take his hands in mine and make him clap as well.  Well, one day when we were at the park, Derek was going down the slide with me.  I encouraged him to go down by himself.  When he finally did it, I yelled, "YAY, DEREK!!!  You did it!!!"  And I started clapping.   He looked up at me with a big smile and STARTED CLAPPING.  I freaked out.  It was a miracle.  I knew in that very moment that I could still reach my son.  I knew that he was not lost forever.  Sure, it had taken him an extra year, but from that moment on the baby books didn't matter.  They went in the trash that very night.  I let my son be on his OWN timetable.  I knew that if I was patient enough and worked hard, I would see my son reach every single milestone...and I consider myself lucky.  I've seen more miracles in my lifetime than I can count.   

Photo shoot...

Pretty sure I have the most beautiful kids in the world...

"Autistic Child in Area"

This was originally published 4/20/12, but I'm reposting and dedicating it to Mikaela Lynch, Drew Howell, and Owen Black--three autistic children who drowned this week.  To their families and friends, I am so sorry for your loss.  

I am not perfect.  I am far, far from it.

It is easy to judge what you don't understand.

The parents of Mikaela Lynch, a little autistic girl who drowned this week, are being criticized.  People are saying she was a bad parent, because her child was prone to wandering.

It hurts me to read. My child is prone to wandering too.  He is also drawn to water.  Does that make me a bad parent?

I have had the scariest thought in the world this week:  It could have been Derek.

See this sign?  There are now two like it in the small town where I live.  Why?  Because I live near a main street.  Tractors go down this street often (I live in a farming community).  Kids on their way to school speed down the road.  They don't pay attention to whether or not a little boy is out wandering by himself.  I'm talking about my son, who has no concept of danger.  You can lecture me as much as you want on how I need to keep a closer eye on my child.  I am not perfect, though I try to be.  I keep safety locks on my doors and watch my son as carefully as I possibly can.  But he is an escape artist.  And if the door is left open by my OTHER son, for even a minute, Derek is out the door before I can say "STOP." 

Derek's language has improved 10-fold in the past year and a half.  He is speaking some, and understanding LOTS.  He knows what "No" means.  If a ball is rolling toward the street and Derek chases after it, there is maybe a 50/50 chance that he'll stop when I yell.  This was not always the case.  In the summer of 2009, my son had no language at all.  He didn't know that words had meaning.  If I yelled "No" back then, nothing happened.  He didn't even respond to his name.  That summer was terrifying.  I lost Derek 3 separate times (once for a total of 10 minutes)!  I grew eyes in the back of my head that summer.  I became what most call a "helicopter parent."

When you lose a child, for any amount of time, something happens to you.  The fear is immobilizing.  Visions of your child splattered on a highway invade your thoughts.  Images of them floating face down in a pool or lake haunt you.  And even thoughts of your child being snatched by a kidnapper surface.

How do I lose Derek?  Let's see.  One time it was because I was putting sunscreen on his brother and Derek turned the corner and went behind the house.  30 seconds and he disappeared.  Another time it was because Tyler got bug spray in his eyes and I was trying to help him get it out.  Yeah...things like that.

Ten minutes is not a long time.  Ten minutes is nothing.  But when you cannot find your child?  Ten minutes is an eternity.  When I finally found Derek that final time, in the neighbor's backyard, I vomited into the bushes.  I was shaking so badly my teeth were chattering.

I vowed then and there that I would do everything and anything I could to keep my child safe.  I notified my local police/fire department that I had an autistic child prone to wandering so that they would be aware of the situation.  I talked to city officials to get the sign up above approved (it took 7 months of researching, attending town meetings, and bugging city officials).  I also got my son a Medical ID for his wrist to notify people that he is autistic and nonverbal.  (He cannot give you his full name, address, and phone number when asked.  Half the time when I ask what his name is, he answers "Mommy.")  I wish our town offered Project Lifesaver, but it doesn't.  Maybe someday.

To the families that lost their children this week:  my thoughts and prayers go out to you.  May you feel the arms of the special needs communities around you.  We are all in this together and we support you.  You are not alone.  We will never judge, because we have been there too.  We are crying with you.

Inspiration and Emotion

Before I get into what I've been doing the past few days, I have to tell you a story.  I met Derek's future self.  Does that make sense?  I'll try to explain.  I saw a father, carrying an 8 year old little boy in his arms yesterday.  The boy had his arms around his dad's neck and he was resting his head on his shoulder.  He didn't look like Derek--he had lighter hair and blue eyes.  But there was something about him...I kept my eye on him (I was at an Autism Walk and the kid liked the bounce house in front of my table, so I got to be a people watcher).  I saw him interact with his dad.  I watched as he jumped in the bounce house and his eyes lit up with joy.  He held his hands the same way and he had the same mannerisms as Derek.  He  also walked/galloped the same.  When he smiled it lit up his face. 

The dad and the son came over and talked to me for a little while.  The boy didn't say much to me, but he did speak to his dad.  I could tell that communication was not easy for him.  Neither was eye contact.  His dad had to prompt him to speak to me.  Oh, but when that beautiful boy spoke to me, and actually looked at me?  It was all I could do not to cry.  It was Derek.  IT WAS DEREK IN 4 YEARS.  It gave me hope, since the boy was talking, but it was also hard to see.  It was obvious that the poor kid was having trouble with the crowd of people and all of the noise.  I wished there was something I could do to help.  The dad told me that his son was in an intensive therapy program and that he hadn't spoken until age 5.  I was amazed how well he was doing.  And I could see, physically SEE the love radiating out of the father's eyes.  People like that give me HOPE.  They are the ones that keep me going, because I know--I KNOW--that they will never give up on their children...

I don't know what else to stay.  I'm an emotional wreck.  The past four days have been a rollercoaster.  I attended the 2012 Nebraska State Autism Conference in Lincoln, NE on April 12-13.  It was phenomenal.  I learned so much in those two days that I cannot POSSIBLY try to recap everything in a blog.  At least without boring people to tears.  I laughed.  I cried.  I wrote down things I needed to do.  And at the end of each day, I crawled into bed DRAINED.  I attended seminars on keeping children safe (WHERE IS MY "AUTISTIC CHILD IN AREA" SIGN, AXTELL?????), bullying, communication, and best of all?  A seminar by a woman who's MOM had Asperger's.  Can you imagine being raised by someone on the spectrum?  Talk about flipping my mindset around.  I like to think of things from different perspectives.  This daughter and her mom have overcome so many obstacles.  It was more than inspiring.  It was unbelievable...
Oh, by the way, the mom was included in Temple Grandin's new book:  Different, Not Less.  Her name is Moppy Hamilton.  She autographed my book for me.  :)  Her story is incredible.

I also met Dr. Koegel, who was on Super Nanny and worked with autistic kids.  They showed this clip at the conference.  I was a mess.  A non-verbal little boy says his very first word on camera:  "Tickle."  Derek's was "Bubble."  I still remember the day.  Memories...I wonder if I'll ever be able to think back to Derek's first years without CRYING.  Everyone else remembers their children as toddlers with smiles and talks about how cute they were.  I bawl. 

Super Nanny Autism Episode

THEN, on Sunday I went to the Autism Meet Optimism Walk for Recovery in Manhatten, KS. 
It was the most organized walk I've ever been to.  (This is where I met the boy and his dad).  They not only had a walk, they had bounce houses, horse rides, a train, races, and all kinds of other events for kids.  I was wishing I could have brought my children, but then I would have been chasing them rather than manning my table. 

To all of you who stopped and talked to me:  THANK YOU for showing interest in the project.  I loved talking to you and hope to hear from you soon. 

Table at the NE State Autism Conference

Oh Poop (The Walmart Story)

I decided today would be the PERFECT day to cheer you up and tell you about a Walmart trip I had about a year and a half ago.  :)  I swore up and down I wouldn't tell people.  But I changed my mind.  Be nice--this is BY FAR the most embarrassing thing that has ever happened to me.

On that fateful day, I went to Walmart.  I shopped with both kids strapped into their little seats at the front of the cart.  Tyler was 4, Derek was 2.5 at the time.  I filled up the cart with groceries.  Derek was fine...as long as we kept moving.  (For those of you who are new to my blog, my youngest son is autistic and still considered nonverbal.)  He liked to watch the wheels of the cart spin.  If we stopped the cart, he started screaming--so I tried to keep the cart in motion. 

All of a sudden I heard the words you never want to hear in the middle of a shopping trip.  Tyler said, "I have to go to the bathroom."  Oh, no.  I took the boys to the back of the store, and wouldn't you know it?  The ladies room was closed for cleaning.  Tyler, still new at the whole Potty Training thing, informed me, "Mom, I have to go poop."  I said, "Tyler, you are going to have to go in the Men's room alone.  I can't go in with you.  I have to stay out here with Derek and the cart."  Tyler, looking a little bit frightened, went in. 

At this point, Derek started screaming because the cart was not moving.  Everyone who walked by stared at us.  No big deal; I was used to it.  But then Tyler came to the bathroom door with his pants around his ankles saying he needed help wiping.  OMG.  Mortification was starting to set in.  I told him to get some toilet paper or paper towels--ANYTHING.  He got some and returned.  A guy came out of the men's restroom, laughing and saying, "Ma'am, you can just come in--the restroom is empty."  I explained, "No, I can't.  I have my other son and an entire cart full of stuff."  Everyone was staring by now.  I helped Tyler wipe and quickly yanked up his pants.  In the process, Tyler bumped his head against the metal latch where the door closes.  He screamed "Mommy, you hurt me!!!"

Now people were really staring.  Derek was screaming.
Tyler was crying.
And blood was beginning to trickle down Tyler's face. 

I'm pretty sure I was white as a ghost.  I pressed a paper towel to Tyler's face, grabbed his hand, plopped Derek on my hip, and promptly ditched my entire cart of groceries.  Yep. I'm one of those people.  I got out of Walmart in record time--before they could call child services on me. 

And that, my friends, is why I like to shop alone.  Seriously, it's like a vacation.

Code Brown

Ok, I've had a few days to step away and process the horror of what I will call "The Incident".  I know some people deal with this on a regular basis, but it has been at least a year for me.  I feel pretty fortunate (most of the time).  Yes, I have my share of difficulties.  But for the most part, Derek is potty trained.  He has accidents now and then (especially when there is a change in routine or he is scared) and he still wears diapers at night...but my child is not a poop smearer.  Normally.

When Derek was younger, he used to poop in the tub regularly.  I swear, he'd wait until he was in the tub to go, just so he could play with it.  He'd paint the tub walls.  I was, of course, disgusted.  But as soon as we got him potty trained, it stopped. 

Then low and behold, on Wednesday of this week, the "incident" occurred.  Derek has become sneaky with going to the bathroom.  He doesn't like to be wiped.  So he'll sneak to the bathroom, go, and then quickly pull his pants up.  A lot of times, this leaves a little bit of a mess in his underwear-- not to mention diaper rash.  On Wednesday, it must have left a BIG mess.  I found my son with one hand in his pants, the other covered in poo.  His hair had poop in it and the carpet had been smeared.  So had his face.  Uh-oh.  CODE BROWN.  I quickly threw my son in the tub and cleaned the living room top to bottom.  I was horrified beyond words.

I know that a lot of autism parents argue about whether or not autism should be cured.  I am one of the ones who think my son is wonderful the way he is. I have accepted his differences and embrace everything about him.  Except this.  If I could change ONE SINGLE THING, I would eliminate, for all autism parents, the fascination their children have with feces.   I cannot for the life of me get my child to eat spaghetti or pizza or so many other wonderful things, yet he will smear poop on his face?  There is something wrong with this picture.  And I know, personally, two other children who do this too. 

I had a doctor's appointment the next day.  I sat in the waiting room and watched a little girl about Derek's age playing.  She was a "typical" child.  She talked with her mother and played with her sister, laughing and smiling and sitting in a chair.  I thought about what Derek would be doing if he were here.  Running back and forth perhaps?  Definitely not sitting.  If he WERE sitting, he'd be on the floor (more likely he'd be LAYING on the floor, rolling his cars).  He would not be talking.  No way.  I had that familiar "smack-in-the-face" feeling.  On a day to day basis, I don't think about how behind my child is compared to his peers.  It's only when I see other children his age...and on weeks when my child smears poop.

I will not let this get me down.  He is making progress.  I will cling to that.  It was just one day, after all...right?

Butter on Bread

Have you ever tried to spread really cold butter (not margarine, but REAL butter) on bread?  It doesn't work very well.  It doesn't spread smoothly.  It either stays lumpy and you have to use a lot of it, or you end up tearing the bread to shreds.

Well, folks...that is EXACTLY HOW I FEEL RIGHT NOW.  Maybe that's a bad analogy, but that's all I can think of.  I am trying to be too many things to too many people and it's not working. 

Yesterday, my oldest son told me that he hates me and doesn't want to live with me anymore.  Yeah, I know.  All kids say that.  But it still stings.  Especially because I do EVERYTHING IN MY POWER TO MAKE THIS CHILD FEEL LOVED.  It's not enough.  It's never enough.  He has been extremely needy since day one and unless I am giving him constant attention, he feels slighted.  When your OTHER child is autistic?  This happens a lot.  I'll give you an example.  His kindergarten class is having a reading contest.  For every 10 books they read, they get a stripe on a Dr. Seuss hat in the classroom with their name on it.  Tyler, competitive child that he is, is determined to get the most stripes.  He gets a free Dr. Seuss book if he wins.  SOOOO, I have been reading 10 books a day to my child for the entire month of March.  That's a lot of reading.  A lot of quality time...on top of our normal day-to-day things.  Is it enough to prevent the "I hate you" speech?  Nope. 

Then, of course, is the challenge to be a wife, a friend, an artist, and a maid (I fail considerably at the last one).  I have an art show coming up in May about this very thing.  The struggle to balance (juggle?) it all.  So it has been on my mind a lot.  I feel like butter on bread.  I'm either spread too thin, ruining everything I touch, or I get stuck in one spot and disappoint everyone else...