Happy Thanksgiving!

I have SO MUCH to be thankful for I don't even know where to start.  That can't be a bad thing, right?  :)

First, I am thankful for my beautiful, amazing children.  Derek said his first multiple word sentence tonight.  Kind of.  I'm counting it, anyway.  He was playing with his rocketship and all of a sudden I heard him say, "Bye, two, twee...basoff!!!"  (Interpretation:  "One, two, three...blast off!!!"  He has always said "bye" for "one" and I'm not sure why.)  He even counted on his fingers.  Incredible.  This kid has made so much progress in the past year.  He also said the word "Gobble."  I showed him a picture Tyler had colored at school of a turkey, so I showed him it and asked if he could say it.  He said, "Goggle."  Close enough.  I love is little voice.  It is so quiet, and so sweet, and it always surprises me when any word comes out of his mouth.  I guess when you wait 4 years for your child to start saying sentences, it seems magical when it finally happens.  Almost miraculous.  I LOVE knowing that he is finally understanding language, since he didn't for SOOO long.  I think back to the endless days when we went over words with flashcards for hours and hours on end and it seemed like we made no progress.  It finally feels like all the pain, all the tears, were worth it... Between 1 year and 18 months my son disappeared.  Since then I have trying desperately to get him back again.  Today, I realized that even if he cannot communicate as well as other children, my son is back.  He really, truly is.  And I can't stop crying...

And then there is Tyler, who is the sweetest, smartest kid in the world.  Just last night when I was tucking him into bed, he told me ""I'm not going to let you go I love you so much!"  Derek was sick all day yesterday.  Like, EXTREMELY sick.  He started vomiting at 4:30 in the morning and literally threw up every 10-15 minutes for the next 4 hours.  He doesn't understand enough to make it to a toilet, so he soiled all of the sheets and blankets in the bed, about 6 towels, and numerous sets of clothing--including mine.  Oh, and did I mention that about 2 hours into the madness he started having diarrhea as well?  I literally had to hold him on the toilet (as he vomited all over me) because he was too weak to sit upright.  Poor kid.  So when Tyler said that at night, it was BY FAR the best part of my day.  How do kids know when you need to hear something like that?!?!?

I'm also thankful for all of the amazing things that have happened this year.  Since MARCH, no less!  I have a studio, a printmaking press, two gallery shows in the works, and an amazing project underway.  I've also met all kinds of incredible people along the way--parents of autistic kids, the kids themselves, and random strangers who have gone out of their way to help me succeed.  I have made so many wonderful new friends
--and I have autism to thank.  Who would have guessed that SO MUCH GOOD could come out of something that once caused me and my family so much pain?  I'm not saying that things are perfect or that the road is no longer bumpy.  Hah!  I'm just choosing to focus on the good rather than the bad...

"Bye, two, twee...basoff!"

WHY

When Derek was first diagnosed, back in July of 2009, I spent a lot of (wasted) time wondering WHY?  Why Derek?  Why our family?  Why autism?  I went through a lot of emotions.  Sadness, anger, bitterness...you name it.  I've got to tell you though, in the past 9 months I've done a lot of soul-searching.  The other day it hit me.  WHY NOT?  :)  Maybe I was chosen to be Derek's mom.  Maybe Tyler was chosen to be Derek's brother and Dustin to be Derek's dad.  I don't know.  It's just a thought.  Through this project I have met so many people that I NEVER would have met if I hadn't had an autistic child.  I have never been so passionate about anything before in my entire life.  This project continues to grow in ways that I never dreamed possible.  So many doors have been opening...  I'm becoming more and more convinced as time goes on that everything happens for a reason and that people come into our lives exactly when they are supposed to...

Deep thoughts for your Thursday. 

Ssssssnakes! :)

What a great day!  I got TWO new pieces started (that's right, I said TWO!!), Derek made a major breakthrough (more on that in a minute), I think? I added another kid to the project, I was commissioned to make an art piece, and I may have booked another art show!!  Ok, so a lot of those things are just possibilities, but I'm determined to make them HAPPEN!  I can't go into detail on them yet, since they aren't finalized, but...I'll just say that career-wise?  Today was awesome. 

Now for Derek's breakthrough.  Derek likes to paint.  Always has.  Tonight he wanted to paint.  He brought me paper and a paintbrush.  Ok.  So I got out the watercolor and cleared a spot for him at the table.  Next thing I knew he started painting lines.  Not normal.  Usually he paints in circles and in totally random places.  I have always thought it was just abstract colors on paper.  Not tonight.  Tonight he painted lines.  Then he put my hand on the paper, looked at me, and said, "Ssssssss."  That's what he says for snakes. Holy crap.  My mouth dropped open.  For the first time in 4 years, I KNEW WHAT DEREK HAD PAINTED.  My eyes filled with tears.  I've wanted to know what he's been painting for so long!!!  Today he painted snakes.  :)  Beautiful.  Absolutely beautiful.

 

Medical Diagnosis: 11/10/11

I can write about it now.  I knew it was coming, but for some reason it still made me sad.  Derek got the "official" diagnosis last Thursday.  The scarlet letter.  The stamp in the book.  The irreversible words in the medical records that will forever make it hard for Derek to get health insurance, additional life insurance, even a job.  He will forever be known as AUTISTIC.  Up until last Thursday he had only been known medically as "developmentally delayed."  He had the school diagnosis of autism, but we'd been trying to avoid the medical one for all of the reasons listed above.  We didn't want it to be permanent--in case he made some miraculous recovery.  But it was becoming pretty obvious that even though he has made great progress, Derek is always going to have major challenges in life.  SOOOO, I decided to take him to a specialist.  I was not happy with his old pediatrician (she didn't know ANYTHING about autism), so I decided to take him to a new one.  :)  This one was "Board Certified in Developmental-Behavioral Pediatrics."  :)

The second we walked into the office, I knew we were in good hands.  The nurse tried to weigh him, but of course Derek refused.  She had to weigh both of us, then I put Derek down, she weighed me, and subtracted the difference.  Then she tried to get his height and he slumped to the floor, put his hands over his ears and screeched.  I asked the nurse if she'd been told he was autistic.  She said no, but that she kind of figured.  Haha! 

When the doctor came into the office, I asked whether we needed a medical diagnosis.  He said no and that normally they had to observe my son complete a series of tests.  We continued with the office visit and he asked a bunch of questions.  During all of this Derek played with dinosaurs on the floor--talking to them in "Derek babble."  Not a single thing he was saying could be recognized as an actual word.  The doctor asked about Derek's eating habits and I explained how he eats primarily crunchy foods and is extremely limited.  He said that right there is indicitive of autism.  We talked about his sleep problems, the communication problems, everything.  Then the doctor examined Derek.  Derek freaked when the doctor shined a light in his eyes, he wouldn't let him look in his ears or mouth, and hated having him press his stomach.  Can you say SENSORY ISSUES???  The doctor recommended I take Derek to a pediatric clinic that specializes in OT, speech therapy, and has a food clinic.  The food clinic sounds interesting--I just hope our insurance pays for it...He also wants me to keep track of Derek's "space outs".  Derek has episodes where his eyes glaze over and he stares off into space.  You have to snap your fingers in front of his face or clap your hands to get him to come back.  It's scary.  The doctor thinks he might be having mini seizures.  So he might have to have another EEG.  We had one 2 years ago for the same thing, but it was inconclusive because Derek kept pulling the electrodes off his head.  He never fell asleep during the test even though he was sleep deprived, and he never had an episode during the test.  So we didn't find anything out.  Sigh...I doubt he'd do any better this time.  He is even MORE sensitive to things.  I'm guessing he'll pull the electrodes off AGAIN. 
Anyway, right when we were leaving, the doctor said, "I am going to give Derek the medical diagnosis of autism.  I don't need to do the formal tests.  Just by observing him today I have enough information to give him the diagnosis."  OUCH.  I know it's obvious there is something wrong with my son, but when a specialist can diagnose him within 30 minutes????  Wow.  I'm not going to lie.  It stung a bit. 

The rest of the day wasn't much better.  Derek is going to be in a documentary about autism.  They wanted to get a haircut on film.  So we did.  20 minutes of Derek sitting in my lap--doing everything he possibly could to escape.  He screamed, cried, gagged (on the hair that got in his mouth), and looked at me like I was the worst mom in the world.  I hate haircuts.    

Derek's 4th Birthday

"And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom." -unknown

Derek turned 4 this week.  I'm having a hard time with it, for some reason.  Derek seems frozen in time at 20 months for me.  The older he gets, the more obvious his delays are.  When you are a toddler it is ok to not talk; to babble.  When you are 4?  Not ok anymore.  I want to protect him for as long as possible from all of the cruel people in this world.  But he is getting bigger by the day.  I won't be able to protect him forever. 

I finally have my first show lined up.  It will be this summer at the University of Tulsa.  I have a lot of work to do before then.  I'm supposed to have 20 pieces done.  At the moment I have 7...this is my latest.  It's about the bond between mother and child.

"Kyle: Love (The Bond Between Mother and Child)

Derek and I are also going to be in a documentary about autism.  A professor from Creighton University contacted me--he wants to film what life is like for a family dealing with autism.  He's going to come to the house and video tape us doing our "thing."  :)  I'm not sure when it's going to take place or what it will entail.  I'll keep you posted.