"It's Not Fair!"--(Life with the Other Child)

I don't write about my typically developing child very much.  When I made this blog, I originally intended it to be about my progress with the art project.  Then, here and there I threw in stories about my autistic kid, because, let's face it, he's extremely entertaining.  (I also got bored in between pieces and side-tracked by medical problems).  So the blog became more about life with autism, and now and then I get an art piece done, I show my work and I get to tell stories about that as well.

But I have a "normal" son as well as an autistic son.  And he's amazing.  He's also been on my mind a lot.

Tyler is a mini-adult.  He's had to grow up fast.  I always get comments from others that he "talks like a grown-up."  He uses big words and is a very serious child.  In many ways, he acts older than his age.  Yet, he still likes me to do things for him, like walk him into school in the morning and make him sandwiches.  I think it's his way of getting attention.

Derek was diagnosed at the age of 20 months, which means that Tyler was 3.  Life turned upside-down for all of us, and Tyler had to deal with very adult issues at a young age.  We tried to shelter him, but he knew that things had changed.  Suddenly, Derek had people coming to work with him around the clock and was getting extra attention.  Mommy was crying a lot.  And Tyler?  Well, Tyler became jealous and angry.  We had to take him to a therapist for a while to help him through his issues.  Completely understandable.  I know how hard everything was for me.  I can't imagine how hard it was for a 3 year old.

The other day, Derek had a bowl of popcorn for supper, because he's...well, Derek.  He still only eats about 10 things.  My husband, Tyler, and I had chicken and vegetables.  A "normal" meal.  Tyler said my least favorite words in the world.  "It's not fair."

We had a little talk.  I asked him, "Is it fair that Derek has had to be in therapy for 3 years?  No.  Is it fair that Derek can't eat things like pizza and cheeseburgers and candy bars?  No.  Is it fair that Derek's had to go to doctor appointments right and left the past few months?  No."

I went on to explain to Tyler that LIFE IS NOT FAIR.  It seems like it should be, but it's not--and the sooner he accepts that, the happier he'll be.  I also told him that I didn't want to hear those words anymore, especially in this house.  I reminded him of several special treats I've gotten just for him and several things we've done lately, just the two of us.  I do everything I can to make sure Tyler knows that he is loved and special.  Even if it's just something little.

For instance, about a month ago, I left a note on Tyler's pillow saying "I love you."  He put in a special cup he has and reads it when he's feeling down.

I also help him with his spelling--one of the few things he has trouble with in school.  I teach him tricks to help him.  I drew him a picture to help him learn how to spell the word "does."  He was spelling it D O S E.  I told him to imagine a snake as an "S" at the end, ready to gobble up the other letters.  Then I drew it on a piece of paper for him.  He laughed and told me I was weird.  I said, "Maybe, but do you think it will help you remember how to spell the word?"  :)

Tyler said, "When Derek can talk better and is learning to spell, let's teach him the snake trick."

You bet, buddy.

This little boy, who is not quite 7 years old, has a heart of gold.  We were talking about marriage and children the other day, because my brother just had twins.  I asked Tyler if he planned to get married someday.  He said yes.  I asked if there was someone he wanted to marry--the girl next door maybe?  Or someone in his class?  His response?  "Someone like you."

My cup runneth over.

Autism Devotion: Speaking to Animals

 

"An animal's eyes have the power to speak a great language." ~ Martin Buber

 

 

Derek in 2010 at the NE State Fair petting zoo.

 

This my second piece for the "Autism Devotion" series that my friends and I are involved with.  Yesterday I wrote about Derek's love of music.  Today, I'm writing about animals...

 

I remember being in the car one day when Derek was two years old.  He was still completely non-verbal at that point.  We drove by some cows and some horses and I pointed them out to Derek.  (I was still desperately trying to get him to interact with me.)  "Look, Derek!  Cows!  Horses!  What do they say?"  Derek acted like he hadn't heard a word I had said.  He just gazed out the window.  I couldn't help but think, "What child doesn't like animals?"  To this day, I have no idea if Derek saw the animals or not.  He was in his own little world.  Tyler, who was four, saved the day by chiming in, "Moooo!  Neigh!"  I smiled back at Tyler, but I had to wipe tears from my eyes.  I LOVED moments like these with Tyler.  I'd loved them since he first started speaking.  One of the best parts about being a parent is when children start recognizing animals and shapes and colors and get excited to see things and share them with you.  I didn't know if Derek would ever be able to do that, and it made me sad.  I wasn't sure if he even knew the difference between a horse and a cow.  All he seemed interested in was wheels and things that spun. 

 

Over the last few years, things have slowly changed.  Now, Derek LOVES animals.  And for some reason I can't explain, they seem to understand that he is "different."  I catch Derek looking into the eyes of animals, and I swear he is communicating with them--without saying a single word. 

 

Watching fish at the dentist

When Derek's aunt got a dog, Derek thought it was the best thing ever.  He tried to share his ball with her.  (And this is a child who DOES NOT SHARE!!!!)  He also snuggled with her on the dog bed.  Ginger (the boxer) has always been incredibly patient with Derek and even lets him hug her and pull her tail.  And now that he has finally started talking? Derek calls her "Puppy."  If I ask, "What's a puppy say?"  He replies, "Ooof!"  



Playing with Ginger

It may be 3 years later than I expected, but my son is finally excited to share his discoveries with me.  In the car he says "Cow!  Moo!  Horsie!  Neigh!"  At the dentist, he watches the fish swim in the aquariam and yells "Fish!" at the top of his lungs.  (Think I care if I get strange looks?  NOPE.)  And at preschool when they had a chicken for a while, Derek sat outside the cage and watched it.  Then when he got home he told me "Chicken bock bock!"

Talking to the chicken at preschool

This Christmas was the real surprise.  Derek decided that the dog and cats at grandma's house belonged inside.  Every time they came to the sliding glass door, Derek let them in (even though they are outside animals).  If someone put them back outside, Derek cried...and then let the animals back in when nobody was paying attention.  Derek wanted the "key cat" near him at all times and lavished him with love.  The two were inseparable.  I have never seen Derek act that way about an animal before, and I've never seen an outdoor cat so in love with a little boy. 

 

If my husband didn't have allergies, guess what I'd be getting my son? 

 

I think more trips to the zoo are definitely in the future.  

 

Plotting to take over the world with Grandma's "key cat."

 

Petting "key cat."

Autism Devotion: Ode to Joy

This month I am joining a few blogger friends and writing about "Autism Devotion."  I had trouble deciding what to write about.  Why?  Because Derek is passionate about so many different things. 

Derek loves to sing.  He always has.  He started singing before he could speak.  When words failed him, he could still express joy by opening his mouth and letting happy sounds come out.  He didn't need words.  He could just sing. 

On August 27, 2011 I caught him on video singing in the shower.  I didn't recognize a single word that came out of his mouth.  But the sound of HAPPINESS in his voice is unmistakable.  If you watch the video, you will see that singing is singing in ANY language, and it is more than beautiful...  

Derek Singing in the Shower

Over the past few years, Derek's love of music has grown.  I believe that teaching Derek songs is the main reason he has learned to speak.  He picks up tunes and memorizes songs easily--even songs on the radio.  He loves Rihanna's song "Diamonds" and if you sing "Shine bright like a diamond" he'll repeat the lyric and add "in the sky" at the end.  He also likes the song "Diamond Eyes" by Shinedown (do you sense a theme?)  If he hears one of them on the radio he says "One more time" when the song ends and flaps his hands.  He also turns paint cans and pots into drum sets.  He pretends that wooden puzzle pieces of guitars are REAL and strums them while he sings.  He even attempts to play a toy harmonica. 

Music speaks to Derek in ways that nothing else has.  At night, I sing to Derek to calm him down before he falls asleep.  Just a few weeks ago, when I started singing "Twinkle Twinkle," all of a sudden I heard Derek's little voice join in.  In the past, if I paused while singing, Derek might fill in a missing word here or there.  But never before had he sang WITH me, word for word, during an entire song.  It was so amazing that I didn't want the moment to end.  Fighting tears, I continued on and we sang "Jingle Bells" together, before he said "Done singing" and rolled over to go to sleep. 

Then right before Christmas, Derek started watching Muppet videos on Youtube.  There is one of the Muppet chickens singing "Joy to the World."  Derek loved it.  There is also one of Beaker singing "Ode to Joy."  Well, technically Beaker sings "Meee meee mee" over and over again to the tune of Ode to Joy.  So that's what Derek does.  But how many 5 year olds know a song by Beethoven?  And when Derek sings, his voice, and his song really, truly are an ode to joy...

Beaker singing "Ode to Joy"

Joy, Pain, and the Occasional Miracle

I had a hard time getting into the Christmas Spirit this year.  Shopping and presents, making cookies, packing, traveling, putting on a happy face, remembering to give Derek his medicine and making sure Derek had food he could eat wherever we went...ugh.

I'm also still trying to recover from everything that has happened.  Now that I'm not running back and forth to doctor appointments and actually have a little bit of time to breathe, I am suddenly exhausted.  And a little overwhelmed.

Derek is still having staring spells (absence seizures), but they are happening less frequently.  With his new medication, we had to start him at a low dosage.  Gradually, over a period of three weeks, the dosage gets increased.  We are hoping to eliminate the spells entirely.  Derek seems to be adjusting, but the medication makes him tired and grumpier than normal. 

Christmas was...interesting.  Some parts were good and some parts were disastrous.  Derek had several meltdowns.  One was in the middle of dinner because he wasn't allowed to play with something potentially dangerous.  Another was when everyone was unwrapping presents.  Derek wanted to play with something Tyler had received as a gift.  Of course, Tyler wanted it too. 

At moments like these, I usually end up having to take Derek out of the room to calm him down.  I try to distract him with something else, hold him and talk to him soothingly, get him milk, ANYTHING I CAN THINK OF to calm him before he becomes inconsolable.  When we are at home, it's not too big of a deal.  It just happens.  When you are surrounded by family on a holiday?  It makes you feel very, very alone. 

Derek seems to be having a hard time with a lot of people and a lot of noise lately.  Especially when he just doesn't know what to expect.  So he hangs onto me and tries to hide.  I can't say I blame him. 

One thing my husband's family does every Christmas is set off rockets.  Yes, that's right--rockets.  (It's actually pretty cool!)  They build them by hand and set them off in the yard (one benefit of living on a farm).  I thought Derek would love it, since he loves rocketships.  Last year I took him outside and we tried to watch the festivities (from a safe distance, of course).  Tyler LOOOOOVED it.  Derek freaked out because of the noise.  We ended up having to go back inside and we watched the rockets fly through a window. 

This year, Derek saw the rockets ahead of time and was attempting to fly them around the house by hand (that was what we had to take away from him during dinner--dangerous).  I hoped that meant he would want to watch them launch this year.  But the second we mentioned going outside and watching the rockets, he screamed, ran to me and said, "No! No!" 

Once again, while the rest of the family was off doing things, Derek and I hung out alone.  He played with cars and his new light sabers; I read a book and played with him when he wanted me to.  If I mentioned joining the others, he immediately freaked out. 

Some days are better than others. 

This was definitely not one of Derek's best days.

Just last week I had someone say to me, "Derek doesn't seem like he's a TRUE autistic.  He makes eye contact and is so loving to you." 

Hmmm.  Did they actually try to have a conversation with my child?  No.

And someone else I know said, "He's doing so well!  If I didn't already know he was autistic, I'd never have guessed."

I know that comments like these are supposed to be compliments.  I KNOW they are.  But for some reason, I bristle when I hear them.  Unless they see my child on a regular basis, most people get tiny glimpses into Derek's life and what it is TRULY like.  Yes, he is doing AMAZING.  But he also struggles to get through things that most of us would consider easy.  An airplane ride, for example--I wouldn't even consider putting my child through that hell at this point in time.  He still can't go to a movie in a theater (we've tried).  He still can't eat in a restaurant.  Eating at ALL is a challenge for him.  And yes, his eye contact is great--but we worked on it in therapy for an entire YEAR.  He's loving--with ME and a few other people only.  He gives me hugs and kisses without my asking.  But if you tell him to give someone else a hug?  He leans into them--one shoulder only.  He doesn't put his arms around other people's necks.  His own dad has to ask him for "neck hugs," and Derek does it, but he does it reluctantly.  I can't imagine how that makes my husband feel. 

Life is full of joy and pain and the occasional miracle.  I keep reminding myself that, because of Derek, I get to witness miracles more often than most.

This was my Christmas miracle:

Derek sang Happy birthday during Christmas dinner--unprompted.  He brought a candle that had been high up on a mantle in another room to the table (we still don't know how he got it down--he must have climbed up on something).  We all were horror-struck at first, realizing that Derek could have gotten seriously hurt.  But then Derek started singing.  His voice was clear and strong, and though he mispronounced words and hummed through the parts he didn't know, it was obvious what the song was.  It was one of the most beautiful things I've ever witnessed.  And it reminded me what Christmas was truly about.  Happy birthday, indeed...

Miracles happen all the time--if you are willing to work hard and open your eyes to what is going on around you.  Derek has been in therapy for 3 years now.  THREE YEARS.  He is doing things the doctors said he might never do.  He's talking.  He's singing.  He loves and cares and shows emotion.  He interacts and plays with his brother.  He's not writing yet, but I have high hopes.  Will I consider it a miracle when he writes his name for the first time?  You bet.  When he makes it through his first kindergarten Christmas program without having to leave halfway through?  YES.  And when he graduates from highschool?  I'm going to be the one cheering the loudest.

I believe in miracles.  I also believe in my son.


“Miracles don't just happen, people make them happen.” – Misato Katsuragi

Hell Week 2012: Part 3 (Stepping Stones)

 “An obstacle is often a stepping stone.” - Prescott

This is the last blog post of Hell Week 2012.  About time, right?

On Wednesday 12/19/12, Derek had his MRI.  Once again, I had to drive to Omaha.  Once again, Derek wasn't allowed to eat after midnight.  And once again, I had to set up babysitters for Tyler. 

Deja Vu...

We got to the hospital at 7:45 in the morning.  Derek recognized where we were and instantly wanted to watch the water at the wishing well.  He did NOT want to put the medical ID bracelet around his ankle.  He also did not want to go back into the hospital room. 

He refused to change into the hospital pajamas, so they said we could wait until right before they wheeled him away.  The room this time had a window, so Derek wanted to climb up onto the window ledge and watch the cars driving by on the street below.  The first time he did it, he accidentally hit the Code Blue button on the wall and sent a team of doctors into a panic.  OOOOPS. 



Looking out the window in the hospital room.  Notice the Code Blue button on the left?  :)

We watched a Star Wars movie on the tv for a while, and Derek played with his action figures and looked out the window.  I could tell he was nervous this time.  He knew what was going on.

The nurse brought in 2 masks and let Derek choose what scent he'd like to fall asleep to.  Derek didn't understand what was going on, so I set the example.  I smelled a pink mask--it was bubblegum.  I said, "Mmmm.  I like this one."  Then I held it to Derek's nose.  He said, "Yucky" and gagged.  The next one was strawberry.  I sniffed it, "Oooh, I bet you'll like this one, buddy."  I held it up.  He didn't say anything, but he didn't gag either.  So we decided to go with the strawberry mask. 

Have I mentioned how awesome Children's Hospital is in Omaha?  They do everything in their power to make kids comfortable.  I mean, seriously...scented masks????  AWESOME.

Finally, one of the nurses came back to give him the "Happy Juice" (Versed) so he wouldn't wake up violent like he did after several of his dental surgeries.  Unfortunately, he spit about half of it out...so I don't think he got the full "Happy" effect. 

Derek sat in my lap and watched Star Wars until he got drowsy.  Then they came to wheel him away for the MRI.  I was hoping he'd be so doped that he wouldn't care.  But he cried out, "MOMMY!!!  Help!  Go HOME!!"  I had to fight back tears.

My brave little boy. 

I truly hope Derek remembers little of these hospital visits.

The MRI took between 45 minutes and an hour.  Afterward they wheeled him back into the room and we had to wait for him to wake up.  He did NOT want to.  What finally woke him up?  When we asked if he wanted to go home. 

Out cold.

 

Being wheeled to the car.

 

The weather forecast was predicting 4-6 inches of snow that evening, so I wanted to get on the road as soon as possible.  I didn't want to rush Derek, but I didn't want to get stuck in Omaha, either.  Especially because I'd gotten a call from Tyler's school saying he'd been released early for weather.  Luckily, his babysitter was able to pick him up from school 2.5 hours early.  (Added stress I didn't need...)

An hour down the road, the rain started.

30 minutes after that, I was in blizzard conditions.  I had to drive 35 miles an hour in what was regularly 75 mph zones.  I could barely see 20 feet ahead of me.  And I still had at least another 2 hours on the road. 

I expected Derek to sleep most of the way home.  He didn't.  He had some juice and some crackers, and then he kept telling me he had to "Trow up" (throw up), but he never did.  I pulled over twice for him, but nothing happened.  Poor kid must have felt rotten. 

FINALLY, I made it to the babysitter's house and picked up Tyler.  I was SO relieved to be home.  They closed the interstate later that evening and cancelled school for Tyler the next day as well.  It may have taken me forever to get home, but I had made the right decision.  I wouldn't have gotten home until Friday!!!  And who knows what I would have done with Tyler?

I got the call from the neurologist with the results from the MRI on Friday.  The results indicated that my son had a brain injury of some sort early in life. That is what is causing the seizures. I never dropped him, so he must have fallen sometime and hit his head. I don't remember a specific fall, other than the time he injured his front tooth--but he fell on his face that day, not his head. The doctor said there is nothing to be done, except to treat the seizures with medication. The rest of his brain looks completely normal.

I'll admit, I'm upset.  Who wouldn't be?  Just like when Derek was diagnosed with autism, I am feeling overwhelmed by guilt.  How did my child injure his brain without my noticing? 

I keep reminding myself, at least it's not a brain tumor.  It could always be worse.  I also keep reminding myself--at least we pursued all of this, rather than letting it go.  The procedures were awful, but we have answers now.  We have a treatment plan that will hopefully help.

Derek is not phased by any of this.  He is adjusting to the medicine (both for the seizures and for the vomiting) and is already focusing better in therapy.  He's an amazing child.  Cooler still?  He's MY amazing child. 

I don't know why any of this is happening, but I have to believe there is a reason my son has had to suffer so much in his short life.  He has overcome every single obstacle he's met with flying colors.  Seizures won't stop my son.  He's still going to move mountains--one tiny step at a time.

Hell Week 2012: Part 2 (The Funeral)

We had to attend Grandpa D's funeral on Monday (12/17/12).  This was my childrens' great grandfather.  It was also their first REAL experience with death, unless you count their guinea pigs dying a few years ago. 

The unbelievable sunrise that morning.

I knew the day was going to be long and difficult, but I remember thinking, "How bad can it be?" 

Never, ever think those words.

I managed to get myself and both kids fed and dressed and looking relatively good by 9:00.  We were only running a little bit late.  I even packed a few toys for them to play with.  We scrambled into the car and managed to get to the church in time for the family service at 9:15. 

I sat with my husband and Tyler at the front during the family service.  I wasn't sure what to expect from either kid.  It was open casket--and Tyler stared at his great-grandfather as if he was expecting him to move.  He held my hand and looked like he was trying not to cry.  Derek wasn't phased at all.  He was climbing all over me and the pew, jumping down to the ground and rolling on the floor, and playing with his two Star Wars figures.  He kept humming Darth Vaders theme song (loudly) and saying "zoom zoom" when the light sabers hit each other.  Every once in a while he'd loudly say, "Dark Vater!" 

I told my husband we'd sit in the back for the actual funeral. 

Before the family service was even halfway over, Derek was being so disruptive I had to take him to the nursery.  At least there he could be loud and not bother anyone. 

Have I mentioned that my son does not have a volume button?  Saying "shhh" makes no difference what-so-ever.

He played with cars in the nursery for a while, and that seemed to help calm him down. 

10:30 rolled around.  Funeral time.  I cringed--I wondered if I should even BOTHER to take Derek out of the nursery?  But I wanted to support my husband and his family.  Talk about conflicting emotions.  So I took Derek and sat in the middle on an end, where there was an easy escape route. 

We were asked to stand.  Derek refused.  So I tried, but he slumped to the floor.  The family entered single file from a side door and went to sit in the front of the church.  Derek immediately started rolling around on the ground in front of me and whimpering.  I tried to get him to sit in the chair beside me and he went right back down on the ground.  I decided to let him be.  But he was making a lot of noise---whimpering and asking, "Derek, what's wrong?"  Finally, after getting death glares from the people around me, I picked him up and carried him back to the nursery for the remainder of the service. 

Next we went to the cemetery.  I wasn't about to let Derek run around outside while they were putting a body in the ground.  It was too solemn an occasion.  So Tyler and my husband went to the burial and Derek and I stayed in the car.  I let Derek have the Ipad, because I could tell he was fidgety.  Only one problem--there was no internet connection.  He tried to get it to connect, so that he could watch a muppet video, and it didn't work.  He screamed at the top of his lungs, "WATCH CHICKENS!!!!!!" and started crying.  I said, "Derek, it's broken."  Then I opened the app for Angry Birds and let him play that.  It worked.  Until Derek saw that Tyler was with Daddy.  Then he repeated over and over, "Daddy, wait!" until my husband and Tyler came back to the car. 

By that time it was almost 1:00.  I'd given Derek juice and a rice krispy treat, but he was still hungry.

We followed everyone to the luncheon hall, where a buffet style lunch was being served.  They had ham and salads and rolls and potatoes and green beans and all kinds of desserts.  But Derek wouldn't eat a single thing they were serving.  Not even the cake.

Derek was becoming more and more agitated.  There were too many people, there was too much noise, and it had just been too big of a day.  While the rest of us were eating, Derek hid underneath the table, near my legs. Next thing I knew, he was sobbing, uncontrollably.  I told my husband, "He's done.  We've gotta go."

And we did.

We bolted.  We got out of there as fast as humanly possible, went back to Grandma's house, packed, and hit the road. 

I thought that was it.  That the nightmare was over.  Derek had fallen asleep almost immediately.  I heaved a sigh of relief.

But I was wrong.  Again.

He wet his pants. 
(Only I didn't realize it, because all he said was "Potty.")

We pulled into a gas station, and while I was in the bathroom with Derek, I realized his pants were wet.  Of course, Derek refused to put his pants or underwear back on.  I had a moment of panic.  Was I supposed to carry my son back out to the car pant-less?  I had to call my husband on the phone and have him send new ones in with Tyler. 

I got Derek dressed and situated again in the car and when we were almost home I got the call from Tyler's school about a teacher at the school dying.  They asked me to have a talk with Tyler about death, since it was the mother of one of Tyler's classmates who had died.  Crap.  Tyler had just seen his great-grandfather put in the ground. 

And later that night was the call from the neurologist confirming that Derek was having seizures. 

Was there ANYTHING good about the day?  Yes.  Tyler was awesome.  He was well-behaved the entire day.  And our talk went really well.  I had briefly mentioned the teacher's death in the car, but then when I was tucking him into bed, we chatted again.  I asked if he had any questions.  We talked about the possibility that I could die.  We talked about his great-grandfather, his friend Z, and the fact that his friend had lost his MOM.  We talked about Derek.  Tyler told me I couldn't die, because Derek needed me, and that HE needed me.  (Choke back sobs.)  Tyler also asked me, "Does Derek understand what dying is...?" I told him, "No, not really." Tyler then asked, "Would he miss me if I died?" I replied, "Of course honey. He misses you when you're at school in the afternoon. He doesn't understand death, but he knows what love is."

Hell Week 2012: Part 1 (The EEG)

Do you remember how I mentioned surviving Hell Week 2009?  It was the week before Christmas three years ago, and Derek had to have an EEG, an MRI, and an autism evaluation in a matter of 5 days.   I NEVER, in a million years, thought I could have a week that would rival that...

I was wrong.

I just survived Hell Week 2012. 

It started with Derek having another EEG last Friday at Children's Hospital in Omaha.  (12/14/12)

It was the same day as the school shootings at Sandy Hook.

It was also the same day Grandpa D passed away.

Saturday morning we headed to Madrid for the funeral of a step-uncle (who had passed away on Thursday).

Monday we attended Grandpa D's funeral.

Monday afternoon I received a call from Tyler's school and found out that a teacher at Tyler's school had collapsed and died.  It was one the mother of one of my son's classmates. 
http://www.kearneyhub.com/news/local/axtell-school-mourning-teacher-wilson/article_b677443a-4a0c-11e2-a8ea-0019bb2963f4.html

Monday evening I received a call from Derek's neurologist and found out that Derek is having seizures.  (I'd expected this all along, but it was still a shock...)

Wednesday morning Derek had an MRI in Omaha. (12/19/12)

Wednesday afternoon I drove through NASTY weather for four hours to get back home to my OTHER son, who was staying with a babysitter.

And NOW, autistic people everywhere are being threatened in the wake of what happened in Newtown. 
http://healthland.time.com/2012/12/19/guilt-by-associationtroubling-legacy-of-sandy-hook-may-be-backlash-against-children-with-autism/

I don't know how to process everything that has happened.  I feel like I'm on a rollercoaster and my emotions can't keep up. 

What do I write about first?  Or do I not write at all?  Should I skip the blogging and try to get into the Christmas spirit?  I have Christmas presents to buy and wrap, holiday baking to do, and I'm so behind on cleaning I can't even find my floor. 

I guess maybe I should start with the EEG.  That's enough for today, right? 

I have to back-track a little, because I'm frustrated.  Derek had an EEG when he was 2.  But it was inconclusive.  It was a sleep-deprived EEG (do I have to tell you how hard it was to keep Derek awake???) and Derek had electrodes hooked up to his head.  That did NOT make him happy.  He was so agitated by the weird things on his head that he couldn't relax.  Even sitting in my lap, watching tv, in a dark, warm room, he was unable to fall asleep.  He only made it 5 minutes through a 10 minute test.  Then he was yanking the electrodes off right and left.  Yeah...EEG #1 was an utter failure. 

So, when the neurologist told me a few weeks ago that she wanted to do another EEG on Derek, I cringed.  I told her what happened the first time and she told me that Children's Hospital in Omaha can do partially sedated EEG's.  That way Derek wouldn't have a problem.  YES!!!!!!  Definitely worth a try. 

For as long as I can remember, Derek has had "staring spells."  He just suddenly gets a blank look and stares off into space.  He doesn't respond when I call his name.  I have to snap my fingers in front of his face, clap my hands, bang on the table, or even TOUCH him to get him to snap out of it.  They happen several times a day.  And they freak me out. 

Friday morning Derek and I checked into the hospital.  I gave him some new toys to play with, which helped immensely since he wasn't allowed to eat anything.  He played with "Dark Vater" all morning.  He played by the Christmas tree in the lobby and looked at the running water in the wishing well (did I mention Children's is actually pretty cool?)

Then they put us in a room.  A nurse gave his some medicine to make him sleepy.  He fought it like no other.  He cried and thrashed and bucked...I held him in my arms and rocked him (and cried too).  Finally, he fell asleep.  I felt like I'd won a battle.  The nurse wheeled him away for the EEG. 

YES!!!!  He's asleep!!!

Waiting for him to come back was hard.  Especially since news of the Sandy Hook shooting was the ONLY thing on tv.  All I could think about was Tyler being at school and AWAY from me.  I wanted to have him near me.

Derek finally came back and slept for a very, very long time.  Then he cried and whimpered when he woke up.  I could tell he felt like CRAP.  He kept saying "Go Home."

In Recovery

Dazed and Confused

Even though he was loopy, I had to drive three hours home that evening.  I had no choice.  We had to leave for the funeral in the morning.  We stopped at a gas station to go to the bathroom once and Derek had trouble walking.  I had to carry him.  He acted like he was high.  He was babbling about cookies and crackers and ice cream.  Hilarious. 

THEN came the call on Monday from the doctor.  She said that the EEG showed sharp spikes in Derek's frontal lobes, indicating that Derek was having seizures.  She was going to put him on Oxcarbazepine and gradually increase the dosage.  She also wanted him to have an MRI. 

Honestly?  I don't know what to feel at the moment.  Scared?  Yes.  Overwhelmed?  Yes.  Relieved?  YES--because they found what I've suspected for THREE YEARS.  Guilty?  Yes--because he should have been diagnosed back in 2009. 

This parenting thing?  Not for wimps.  What did I learn this week?  I will do whatever I have to do to help my children.  Watching my son go through so much over the past few months has changed me.  There is nothing like having a sick child to make you realize the true value of health.  I would sacrifice my own health for theirs if I could.  I would die for them.  I love my children so much that when THEY hurt, I hurt.  Our lives are forever entwined, and I wouldn't have it any other way. 


"Man performs and engenders so much more than he can or should have to bear. That's how he finds that he can bear anything." ~William Faulkner