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

Do Zombies Cry?

I think I'm turning into a zombie.

I'm "dead" serious.  :)

In the past few years, it seems like I have become emotionally numb to a lot of things that used to bother or upset me. 

It has been 3 years since Derek was diagnosed with autism.  When he was first being evaluated, and in the 6 months or so following the diagnosis, I was a mess.  I cried all the time.  I cried over the child I thought I'd lost.  I cried over the dreams I was giving up.  I cried out of fear and anger and frustration. I cried because I felt alone.  I cried because the future was suddenly uncertain and I didn't know how to help my child.  I cried because I felt like my heart had been ripped out of my chest. 

As we all know, life goes on.  Healing takes time (and I didn't HAVE time)--so I put band-aids on my emotions and pretended I was ok.  Day by day, I did what I had to do to survive.  I became a google junkie and an autism "expert."  I discovered ABA and hired therapists to work with my son.  Derek slowly started to improve.  I also stopped crying.

In three years, life has changed tremendously.  I don't really remember what life was like before autism.  I don't remember the person I used to be, but I'm told I was kind of crazy and fun. 

What am I now?  Numb.

The past year has been a whirlwhind.  SO MANY THINGS HAVE HAPPENED.  Derek had to have dental surgery again.  He also had to have an endoscopy.  He was vomiting in the middle of the night at least once a week for MONTHS on end--turning me into a sleep-deprived maniac.  He was finally diagnosed with cyclic vomiting syndrome.  What exactly is CVS?  Here you go:  it means my child wakes up vomiting in the middle of the night for no real reason at all.  He suddenly sits up and vomit comes spewing out of his mouth.  I run him to the bathroom (he sleeps with me right now so I can help him) to minimize the mess.  Then he vomits uncontrollably for hours on end.  Sometimes it's only 2 hours.  Sometimes it's up to 4.  And sometimes he gets diarrhea with it--explosive diarrhea.  I sit him on the toilet and hold him up (because he is too weak to hold himself up) and he vomits into a towel.  He cries because he doesn't understand what is happening.  He freaks out when he gets vomit on himself.  And what causes CVS?  Who knows.  It could be caused by migraines, but since he's autistic, there's no real way for him to tell me if he's in pain.  So I have no indication when it's going to happen.  It can also be triggered by certain foods and stress.  He is on medicine, which is helping (Thank God).  But I feel like I'm waiting for the other shoe to drop.  I don't know when his next attack will hit...

http://my.clevelandclinic.org/disorders/pediatric/cyclic-vomiting-syndrome/hic_cyclic_vomiting_syndrome_in_children.aspx

Derek still has to have allergy testing, an MRI and an EEG.  Turns out there is a possibility Derek has epilepsy too.  He's had strange staring spells since he was 2.  He had an EEG in 2009 that was inconclusive because he yanked off all of the electrodes.  This time he will be sedated. 

I'm in survival mode.  In order to get through all of this, I had to turn off my brain.  You know, the part that has normal, every day emotions?  Happy, sad, angry, frustrated, impatient, bored?  Hah.  For the most part I have turned into a zombie.  My "disgust" factor was turned off a long time ago.  When you get yakked on repeatedly, vomit no longer phases you in the slightest.  I also hear about things happening to other people and I think, "Oh, that's supposed to be funny."  But I have trouble laughing.  I hear about babies being born and people getting married and friends getting jobs--and I try to be happy.  I really, truly try.  But I'm beyond exhausted.  I'm at the shut-down point where no emotions exist.  Unless you count numb.  I have too much on my plate to take on anymore--and people with road rage, impatience at the check-out line at the grocery store, and even overly happy people seem ridiculous to me. 

I've turned into "that" person.  The one that people hate.  The one that never calls.  The one that doesn't email back.  I rarely go out anymore, unless it's to go to yet another doctor's appointment. 

Every once in a while, something will happen and actually penetrate my brain.  Something miraculous.  Like Derek recognizing Santa.  He sat on his lap and said "Stanta" and whispered "Ho, ho, ho."  Or when Tyler and Derek sat on opposite sides of the teeter-totter last week for the first time EVER and actually did it correctly.  Both of them were giggling and Derek's eyes were twinkling in the sunshine...moments like that hit me hard.  Then I am hit by a SURGE of emotion and tears cascade down my cheeks like waterfalls.  Yes, zombies cry.  When it really matters. 

Never shut up. Ever.

Three years ago during the week before Christmas, I survived Hell Week.  I don't remember the exact dates.  But I know that on the Monday before Christmas, Derek had an MRI.  On the Wednesday before Christmas, he had an EEG.  And on the Thursday before Christmas, he had his second autism evaluation and was officially diagnosed.  Derek was 2 years old.  And somehow, I survived the week. 

That Friday, I woke up and realized I hadn't done any Christmas shopping.  I didn't have a single present for anyone in my family.  In a slight panic, I packed my two year old non-verbal autistic son and my 3 year old (very chatty) son into the car and went to Target with one goal in mind--to get Christmas presents for EVERYONE. 

I was on a mission.  I was throwing things in the cart and trying very hard to be "Christmas-y."  You know, full of cheer and what-not. 

All of a sudden, something stopped me in my tracks.  I saw a woman yelling at her child.  He was young.  Maybe 4?  And sure, he was being naughty.  He was telling his mom he wanted something over and over again and tugging on her arm.  He was being a typical 4 year old.  And I'm sure the mother was frazzled with all of the last-minute Christmas things that had to be done.  But what she said haunts me to this day. 

She yelled at her child, "Just SHUT UP!!!"

I'm sure my jaw dropped.  I couldn't help it.  I looked at Derek, who was sitting in the cart, staring up at the lights on the ceiling.  My beautiful, son--who at that point had not yet uttered a single word.  That woman had NO IDEA how blessed she really was.  What I wouldn't do to hear my child speak...  The stress of the week hit me all at once, and tears started streaming down my cheeks. 

That is why, three years later, I do not get caught up in the holiday hoop-lah.  I no longer participate in Black Friday.  I do not have an Elf On The Shelf.  I make Christmas cookies, but only because my children like to make them with me.  If I start to get overwhelmed, I think about that one week and remember what Christmas is REALLY about...

My present this year?  Derek started speaking.  REALLY speaking.  Short sentences even!

NEVER shut up, my child.  Ever. 

Children Grow Like Weeds.

When friends or relatives haven't seen me in a while, they always say, "Oh, your children have grown so much!" They also tell me how much Derek is improving, and like to point out that I probably don't notice it, since I'm around him all the time. 

Guess what, folks?  I notice.  I consider it one of the grand privileges of being a stay-at-home mom.  I get to witness EVERYTHING.  I notice when one of my kids outgrows a shirt or can no longer button a pair of pants.  I notice when they can no longer squeeze into a pair of shoes.  I can physically SEE my children growing--right before my very eyes.  Much as I wish they'd slow down, they grow like dandelions in the summer. 

It's not just physically that they are growing, either.  They are growing as PEOPLE, too.  In the past year Derek has learned to talk. He answers simple questions, sings, and even says 3-5 word sentences.  And Tyler?  Tyler has learned to read, add and subtract.  Both of their brains are developing magnificently. 

They are both developing emotionally as well.  Derek is learning compassion, which is supposedly difficult for autistic individuals.  For example, I hit my head the other day.  He asked, "Are you ok?"  Then he hugged me.  When did he learn to do that?  He also thinks things are funny and laughs at appropriate times.  INCREDIBLE. 

Tyler is so complex it is mind-boggling.  He asks questions I can't even answer.  He wants to know EVERYTHING.  He asks about dinosaurs and how the earth was created and why Jesus wears a bathrobe and why angels are sometimes pictured naked...he asks about autism and why Derek has it and why he does NOT and if Derek will always be autistic...he asks how babies are created and why he and Derek were born into THIS PARTICULAR FAMILY...he asks why some kids have cancer and why some kids die...

Sometimes, "I don't know" is the only answer I can give. 

I think about my own life--I have changed a LOT in the past 5 years, that is for sure.  But compared to how much my children have changed in just 365 days?  It doesn't even compare.  I wonder sometimes if other parents are as awestruck by their children as I am.  I'm trying to cherish the moments.  I'm trying make everything count.   

Someday I will look back at these years and wonder where they went.  I will long for the cereal on the floor, the noise, and the dirty hands hugging my neck.  I'll long for the bouquets of dandelions they once picked for me.  But time refuses to stop.  My children might be growing like weeds, but really, they are turning into beautiful flowers. 

Daily Battles and Random Thoughts

I had a dream last night that I was drowning.  Some invisible force was pushing me down and I couldn't find my way to the surface of the water.  I struggled to wake up, only to find that Derek's arm was around my neck.  Well, that explains the dream--sort of. 

Derek has been sleeping in my bed for a while now.  Since he has CVS (Cyclic Vomiting Syndrome), it is easier.  A) I don't have to worry about him asphyxiating (did I spell that right???) on his own vomit.  B) I can race him to the toilet and minimize the mess.  C) I can comfort him. 

The downside, of course, is that I haven't been sleeping as well.  I often wake up with feet in my face, my blankets get stolen, and I get kicked.  Alot.

I also get to wake up to hugs and giggles--and sometimes it's the best part of my entire day. 

Friday was an OFF day for Derek.  You know the kind, right? 

Derek saw his pediatrician in Omaha on Friday.  This doctor is a developmental behavioral pediatrician who is known for being great with autistic kids.  80% of his client base has autism. 

Derek had been extra stimmy that morning.  He had no interest in the toys in the waiting room.  Instead, he chose to run back and forth, laughing loudly and hysterically for no particular reason.  I couldn't help but think, "This could be interesting." 

The nurse called us back and we waited in the room.  Derek played with some dinosaur toys they had in there, but I could tell he was nervous.  He's seen a lot of doctors lately, and his eyes kept darting around, like he was looking for an escape route. 

The doctor knocked on the door and came in.  He said, "Hi Derek.  How are you?"  Derek responded by repeatedly grunting (he sounded like Forrest Gump).  Then he threw himself on the ground and spun in circles.  (Not exactly sanitary...)

For just a split second, I felt a flash of embarrassment.  But I quickly checked myself.  Why was I embarrassed?  This doctor has surely seen it all.  True, I wished Derek was having a better day.  I wanted the doctor to hear Derek talk and witness all the progress he's made.  But with autism, you can't always get what you want.  The important thing was that the doctor heard our concerns and helped us.  He didn't judge.  He also cares about Derek and wants to help him feel better. 

I had a three hour car ride home.  I'd like to tell you that Derek fell asleep immediately and I had a chance to relax.  Instead, I had to pull over 4 separate times because Derek dropped a toy and started screaming at the top of his lungs, had to potty, and spilled juice on his shirt and needed a new one...

Yes, it was definitely one of those days. 

But those days inevitably remind me something--that autism will not defeat my son.  Derek can't help it if a wet shirt makes his skin crawl.  Exhausted and frustrated as I get, my little boy is still there, behind all the behaviors, just trying to make sense of it all.  Derek is fighting a war.  I'm just here to help him get through the daily battles. 

Top 10 Reasons I Love My Autistic Son

I haven't blogged lately.  I haven't made any art either.  Life has gotten in the way.  People keep telling me that if I want something badly enough, I have to MAKE time.  Ok, I agree.  And I'm not one to make excuses.  So I'll just say that right now, my priority is sleeping.  Derek is still having vomiting spells at least one night a week.  That means that one night a week, I get about 3 hours of sleep.  The next day, I'm a zombie.  Even if I get 8 hours of sleep the following night, it doesn't make up for the lack of sleep the night before.  I am perpetually running on fumes, and guzzling caffeine like my life depends on it.  Art is going to have to wait.

Anyway, I decided that today I needed to refocus my energy and remind myself of all the reasons WHY I love my son.  It's not Derek's fault he is sick.  I would rather spend a sleepless night holding him over a toilet ANY TIME than not have him in my life. 

So here it is.  The list.  The Top 10 Reasons I Love My Autistic Son (in no particular order).

1.  He gives me unexpected hugs and kisses.  Most people have to ask Derek for a hug.  He gives them to me "just because."  And they aren't little sideways hugs.  They are bear hugs.  For these I am eternally grateful, since so many autistic kids don't like to be touched. 

2.  His laughter is infectious.  Especially his belly laugh.

3.  The kid has a sense of humor, which I never expected.

4.  The way Derek says "Mommy!" when he hasn't seen me in a little while.  It's my favorite word.  I waited YEARS for Derek to say it and I still think it's priceless.

5.  Derek finds joy in simple things.  He likes pouring water from cup to cup, letting sand trickle through his fingers, watching the wind blow leaves on a tree, or letting a ladybug crawl on his hand.  Because of my son, I stop and take notice of little things going on in the world around me.  I was too busy before. 

6.  He loves music and can pick up a tune faster than anyone I know.  In fact, we've used music to help Derek learn words.

7.  Derek loves to match things.  He has since he was a baby.  For example, yesterday he discovered we had two Star Wars figures with lightsabers.  He was so excited to find TWO figures that he was jumping up and down and flapping his hands. 

8.  Derek tries exponentially harder than anyone I know--at EVERYTHING.  He struggles to get words out of his mouth.  He has to work to grip a pencil and write his letters.  He has to fight revulsions to certain textures just to EAT.  His ability to smile, despite his daily battles, is inspiring.

9.  Derek thinks the world of his older brother.  They are best friends.  They fight all the time; yet Derek watches everything Tyler does and tries so hard to keep up with him.  He even looks around for Tyler when he's not home.

10.  When Derek makes eye contact with me, I swear he speaks to me with his eyes.  We don't need words.  The connection between the two of us is the most powerful thing I have ever felt.  There are no words in the dictionary to describe what passes between us--it's MORE than love...

Memories, Miracles, and a Little Bit of Magic

Derek at age 2

Derek's MDT is on Tuesday.  What does that mean?  It means that his Multi-Disciplinary Team reevaluates him for autism.  No. Big. Deal.  Except it is.  It means everything in terms of the services he receives in school.  I'm not worried, because I know Derek will still qualify.  But it's hard to hear that your child is behind his peers--even when you know it's coming. 

It has been 3 years since Derek was officially diagnosed.  1095 days.  It feels like a lifetime.

I cleaned out Derek's therapy room today.  All I really wanted to do was vacuum and straighten the room up.  90 minutes and a trip down memory lane later, the room is definitely clean...

When I went into the room, I was in a rotten mood.  I wanted to take a nap, but that was out of the question.  So I dumped an entire toy box on the floor and started shuffling through it.  The first thing I found was a plastic blue circle.  It stopped me in my tracks.  I was instantly reminded of a day 3 years ago when I was trying to help my son fit different shapes into a shape sorter.  A purple cross.  An orange square.  A red triangle.  The circle was the only shape he could get to fit through the hole.  Suddenly, I couldn't breathe.  A lump formed in my throat.

I looked around at some of the other things in the room.

There were wooden puzzles on a shelf.  You know, the kind made for toddlers.  My son struggled through them all--especially the alphabet ones.

PECS (Picture Exchange Communication) boards were propped against a wall.  there was a picture of Cheetos and a picture of his favorite fire truck...we'd used those for rewards...I remembered screams and smiles once Derek finally figured out what we wanted from him.

By now tears were coursing down my cheeks.

If you are wondering why I cried, it's because my son has come SO FAR.  Unlike most children, learning didn't come naturally to Derek.  He didn't pick up on language naturally.  We had to teach him language with flashcards.  We had to teach him how to PLAY.  We had to teach him how to turn on a LIGHT SWITCH.  We had to teach him everything. 

In three years, Derek has somehow figured out a way to not only survive, but to THRIVE in a world that he is not comfortable in.  I never expected him to be talking at all, but he is.  I consider him my miracle.  He's even starting to put sentences together.  He's not writing yet, but I have high hopes.  He's interacting with his brother.  His eye contact is amazing.  And best of all?  He's got a SENSE OF HUMOR!!!!  He smiles and laughs and tries to get others to laugh.  I am absolutely head-over-heels in love with this child of mine, and I could not possibly be more proud of him.  His spirit is magical, and I wouldn't change a thing...

Derek now.

 

My Son the Superhero

I have mixed feelings about October.

On one hand, I love it.  I love fall and everything that comes with it.  The leaves turning brilliant shades of red, orange, gold and brown.  The cool, crisp air.  Pumpkins.  Crunchy apples.  And best of all?  My son's birthday. 

Derek was my Halloween baby.  When he was born, I was thrilled.  I thought that as he grew up, he'd LOVE having a Halloween birthday because he'd get to dress up at school and have parties on his special day. 

Halloween 2010--Derek refusing to wear the hat.  This was the last time I got him to wear a costume.

But I never expected Derek to be autistic. 

I see people post pictures of their children in adorable costumes and I can't help but be jealous. 

Derek hates costumes.  He can't stand wearing them.  Make-up or a mask on his face is out of the question.  So is a hat.  Each year has gotten progressively worse.  Last year, he refused to wear even a fireman's jacket made of fleece.  So my son went trick-or-treating as...you guessed it...Derek.

Derek doesn't understand the concept of trick-or-treating either.  He tries to go into people's houses.  And he doesn't like the candy.  He usually lasts about for about 10 minutes, much to the dismay of my other son--who LOVES Halloween. 

As a parent of a child who has a hard time with Halloween, here is a little advice for all of you who DON'T have children on the spectrum:

If a child doesn't say trick-or-treat or thank you when you give them candy, cut them some slack.  Maybe the child is nonverbal. (Derek never said a word last year.  I spoke for him.)
 
If a child searches through the bowl of candy, don't automatically assume he/she is being rude.  My son can't tolerate certain textures and will only eat smarties and suckers.  He doesn't know that it's rude to search through a bowl.

If a child tries to enter your house, don't freak out.  Especially if the parent is doing everything they can to control their child and is apologizing profusely. 


I know many of you are probably asking yourselves why I bother taking my son trick-or-treating at all.  Honestly?  I don't know.  Because it's his BIRTHDAY and I don't want to deprive him of thngs other kids get to do.  I also do it for his brother.  Tyler shouldn't miss out on things just because he has an autistic brother.  I also have hope that one day Derek will WANT to dress up. 

But this year?  I'm letting go of all expectations.  If Derek doesn't want to wear a costume, I won't make him.  He can go as himself. 

Because let's face it-- Derek is pretty awesome.  MUCH cooler than Batman or Spiderman or Luke Skywalker or any other person he could dress up as.  My son IS a superhero...

I Can.

I try to be a pretty positive person, but the last few weeks have gotten the best of me.  Why?  Because Derek's tummy trouble's have taken a turn for the worse. 

Throughout his life, he's had some issues.  He's been lactose intolerant since birth.  When I tried to switch him to milk at age 1, he ended up with explosive diarrhea.  So I went with soy milk instead. 

Then, of course, were the texture issues.  Derek never really got past the finger foods that toddlers eat.  He eats primarily dry, crunchy foods.  No pizza, no pasta, not even bread.

And then there was the vomiting.  Every once in a while, he'd have unexplained vomiting spells.  They happened rarely, so I thought he'd just caught a bug.  Now, I'm not so sure. 

The vomiting has increased 10-fold in the past year.  I've been keeping track on a calendar.  Last school year he had 7 different episodes.  He had a couple this summer, and this school year?  He's already had FIVE. 

I started keeping a food journal, thinking it was a food allergy.  And since the episodes decreased over the summer I thought I had it figured out.  I thought Derek was allergic to something in multigrain foods--because every time he ate multigrain Tostitos or Cheerios, he got sick. 

But he hasn't eaten those in months, and the past few weeks have been the worst yet.  Every single time, it is the same.  At about 3 a.m. (Derek's witching hour) he wakes up and starts hurling violently.  If I'm lucky, I get him to the toilet.  He continues to vomit every 10-15 minutes until there is nothing left in his stomach.  And I mean NOTHING.  Somewhere in the middle of all of it, it turns to diarrhea, so then I'm left holding an almost 5 year old child up on the toilet while he spews all over me (I try to catch it in a towel, but that rarely happens). 

Sounds like a food allergy, right? 

Last week he got sick on 3 separate nights, and one night he threw up blood.  Ummmm, not good.  Time to call the doctor.

I've resorted to having Derek sleep next to me, so that I can get him to the bathroom if an "episode" hits.  And once it starts I just keep him in the bathroom. 

I'm a nervous wreck.  I can barely sleep, because every time Derek even stirs, I wake up. 
I'm exhausted. 
I'm terrified. 
Derek's doctor's appointment is this week, and I don't know whether they will give him a referral to an allergist or check to see if there is something else wrong.
I'm worried about money, and how we are going to pay for MORE doctor's bills. 
I'm MAD that my poor son keeps having to go through stuff like this.  Hasn't he been through enough?  MRI's?  EEG's?  Dental surgeries?  Good grief.  He's not even 5!!!!

All I know, is that I can't do this anymore. 
Watching my child get THAT sick, night after night, is killing me. 
He screams. 
He cries. 
He doesn't understand what is happening.

When I was 8, playing with dolls and dreaming of motherhood, this is not what I expected.  I love my kids with every single fiber of my being, but I'll be completely honest...I'm hanging on to my sanity by a thread right now. 

Derek is down to eating 5 foods.  Gluten free pretzels, rice krispies, pears, apples, and natural popcorn.  Oh, and juice and soy milk.  THAT'S IT.  I'm going to have a severely malnourished son and there is absolutely nothing I can do about it right now. 

I can't do this. 
And yet, I AM doing it.  Because let's face it, if I don't--who will???
My son needs me now, more than ever. 
I will figure out what is making my son sick, even if I have to take my son to an allergist and get him "scratch" tested.  I'll even take him to a gastroenterologist if I have to.

Nobody said that being a mom was going to be easy.  Time to put on my big girl panties, drink some coffee, and get over myself.  I CAN DO THIS.

On Being an Adult

I would like to know when the turning point is.  You know?  The moment you actually become an adult.  I don't think it's when you turn 21.  And I don't think it's when you get married.  I don't think it's when you have children, either.  Because I know plenty of people who think parenting is a second job. 

I'm not sure when it happened to me.  I don't know what day I became an adult.  I think it happened gradually.  But suddenly I woke up and realized that I was putting my children's needs in front of my own.  Is that a normal mom trait?  But something has definitely changed.  I automatically think of my children when I make any kind of decision now.  The carefree, "crazy", spontaneous person I once was is long gone.  I see glimpses of her now and then, but the person I see in the mirror has witnessed things that have forever changed me.  And there is no going back. 

As I child, I longed to be an adult because of the freedom.  Yes, I said that right.  The FREEDOM.  I wanted no rules and to be able to do as I pleased.  I wanted to travel the world.  Funny--I don't take my kids farther than Omaha. 

I remember in college staying out until the wee morning hours and worrying about things like getting good grades and meeting "the man of my dreams."  I actually cried when I got my first B at the end of a semester.  Lord, if I could return to those days...

I've been taking care of a four year old with a 103 fever all day.  My son has been clingy, weak, and alternating been cuddly and frustrated all day.  There is nothing like fear and worry to make you take stock of what is important.  Health and Life.  They are oh, so precious. 

When you are a child, you don't realize how painful adulthood is going to be.  You don't realize just how many people that you love and care about are going to have to deal with things that are impossibly difficult.

A friend of mine lost a child to a heart defect.

Another has a child fighting cancer. 

Yet another lost a child to an unbilical cord accident--her baby had a heartbeat one day and the next day her baby was gone. 

And another friend had a baby with acrania (a birth defect where the skull doesn't develop correctly)-- my friend knew during pregnancy that her daughter would not survive outside the womb, yet she chose to carry her to term anyway for the chance to hold her daughter for a few moments. 

Two of my friends have children with cerebral palsy. 

And the number of my friends who have kids with autism?  Grows daily.

What makes someone an adult?  Is it compassion?  Is it being able to handle suffering and pain with grace?  Is it the outward appearance of strength when what you really want to do is fall apart?  Is it being able to multitask like a queen?  Is it juggling IEP meetings and packing lunches and keeping track of ABA schedules and getting the kids to school on time and somehow--SOMEHOW finding time to take a shower?  Because I guarantee you--every single one of my friends deserve a medal. 

I miss the carefree days.  I'm not going to lie.  I miss sleeping in and being able to drive to Denver on a whim.  But I wouldn't trade my kids for the world.  Not even when they are sick and vomiting all over me.  Even on the worst days, my sons reach up their little arms and want hugs.  They still call me "Mommy," which is the best title I've ever had.  I still get the privilege of being the most important person in their world--for at least a few more years.  I'm the one who makes "owies" go away with kisses, the one who chases away the boogieman at night, and the one who can comfort them when they are sick. 

I guess being an adult isn't so bad...

Subtle Reminders

Yesterday I tried to "get away" for a little while. 

The husband and I went to see The Dark Knight Rises in the afternoon.  We decided to go to the 3:40 showing to avoid the Saturday night crowd.  The theater was pretty empty.  I'd say there were maybe 10 people tops.  We got to sit pretty much where we wanted.  So we picked a spot smack dab in the center, a few rows up.  It was ideal.  Almost. 

A few rows ahead of us to the left, a mom and a daughter were sitting.  I think the little girl was maybe 8 or 9?  And she had an obvious disability-- I'm guessing cerebral palsy.  She didn't have complete control over her body movements and now and then during the movie (especially when she got excited), the little girl made noises and squirmed in her chair.  The mom kept shushing her, and I wished I could send her some kind of mental signal saying, "It's ok!!!  She's not bothering anyone! If someone says anything to you, I'll come to your aid--I'm in the club!!!" 

No, I do not have a daughter with cerebral palsy.  I have no idea what that mother goes through on a daily basis.  I'm sure she has challenges far different than the challenges I face.  But there is an undeniable bond between parents of children with special needs.  We have fought similar battles.  We know what it's like to be stared at in public.  We have been in more doctor's offices than we can count.  We worry--A LOT.  We cherish things that others take for granted--like walking, and smiles, and eye contact, and words, and being able to write letters...

No, the little girl in the movie theater didn't bother me at all.  I thought it was awesome the mother TOOK her daughter to see a movie.  I also loved it, because it reminded me of Derek.  Derek can't sit through a movie in a theater yet.  YET.  (I cling to the hope that someday he'll be able to do things like eat at a restaurant and go to a movie.)  And when the mom pulled the little girl into her lap at the end of the movie because she got squirmy?  I loved it even more.  The mom kissed her daughter's head and you could physically see their love for each other.  I had to fight tears.  Then when the movie ended, she carried her daughter out of the theater like it was no big deal.  We exchanged a few words, and I wished I could tell her about Derek.  Instead I just gave them both a smile. 

My brief "get away" wasn't all I'd planned--it was more. 

Changing the World

“Our lives begin to end the day we become silent about things that matter.” ~Martin Luther King Jr.

When I was in high school, I visited the Holocaust Museum.  It haunted me.  Years later, I still remember the pictures I saw and the stories I heard.  I remember toothbrushes and striped clothing, wooden bunks where people slept, and the smell of a boxcar that carried travelers to concentration camps.  I remember a huge hallway filled to the brim with pictures. 

But what do I remember most of all?  Shoes.  One of the rooms had a huge pile of shoes.  There were shoes of all sizes, that had been worn by children, Jews, Poles, Romanis (or "gypsies"), disabled people, homosexuals, and Jehovah's Witnesses.  The shoes were brown and of course, they smelled a little funny.  But when I saw the shoes, it hit me more than ANYTHING ELSE that the Holocaust was real.  It had happened.  Human beings, just like you and me, had worn those shoes.

Shoes at the Holocaust Museum

I've heard people say that the Holocaust can't happen again, that things have changed.  Or worse yet, they say that the Holocaust never happened at all. 

I read this on another fb page the other day and I HAD to share.  The page owner did NOT write it; somebody shared it on her page.  It scared the crap out of me.  In this day and age, ignorance and hate still exist.  I'm changing names for obvious reasons...


 Posted on the wall of Single Mothers who have Children with Autism

So-and-so wrote:

Can I share this with you guys? Enjoyed interviewing someone today for a nanny. She seemed really nice. Toward the end, she said, "I feel like I can tell you this because John's* adopted and you won't be offended. My pastor and I have a theory that children with autism and other challenges are the children whose ancestors have committed gravely sins." I said, "I'm offended that you and your pastor are ignorant and feel sorry for the child you ever care for." Then I think I said WTF and other choice words. I don't remember much after that. It's all a blur. The position is still open.

Anyone else heard other bs "theories" like this one? I wanted to punch her.

*Name has been changed


Anyone who meets my son loves him.  He is beautiful and innocent and full of smiles.  The fact that there are still people out there who think like this terrifies me.  One person can change the world.  Look what Hitler did.  I thought about not saying anything about the above post, but it's not in my nature.  As Martin Luther King, Jr. said, “Our lives begin to end the day we become silent about things that matter.”

I don't blame this mother for getting upset.  Not in the slightest.  When it comes to Derek, I am a protective mother bear.  I see RED if anyone even implies that he is anything less than the wonderful human being I know him to be.   

I don't know how many of you remember what happened back in January?  There was a person trolling fb pages and stealing pictures of special needs children.  Then he was posting the pictures on his page and saying in the captions that these children should have been aborted.  He made one comment that cut like a knife.

Under the picture of a child with autism he wrote that the child was a "cum-stain that should have been aborted."

Obviously, words like this are not easily forgotten.  (I still don't think I've fully recovered...) 

There was a big uproar in the special needs community after this and many pages pulled their pictures in order to protect the families.  I DID NOT.  I gave families the option to NOT be in the project if they wanted, but I felt that if I removed the pictures, I was letting the person win.  My goal with this art project has been and always will be to make the world see that autism is beautiful.  

Having a child with autism is not easy.  Some days, it is the hardest job on the planet.

But I would not change things. 

I do not believe that Derek should have been aborted.  Nor do I believe that he is the result of some grave sin I committed in my past.  If anything, Derek is happiness and love embodied in a human
spirit. 

If one person can change the world, than maybe (just maybe) it's my son.  Maybe Derek will continue to improve and someday be verbal enough to become a public speaker like Temple Grandin.  Maybe he can make a difference.  Maybe he can be a shining light in a world of hatred (because let's be honest--Derek doesn't know HOW to hate). 

Maybe Derek can help make sure that there is never again a pile of empty brown shoes...

Time

I'll be completely honest.  I spent a good chunk of my weekend either swallowing a lump in my throat, fighting tears, or crying.  Don't get me wrong, I laughed a lot too, but today?  I'm exhausted and emotionally drained.

When I got married (almost 8 years ago), I had plans.  Lots and lots (and LOTS!!!) of plans.  No, I didn't want a white picket fence and 2.5 children and a dog or any of that nonsense.  But I wanted to be SUPERMOM.  I wanted to be like my parents.  Looking back, I realize just how incredible my childhood was.  My parents let me and my brother and sister explore so many different activities.  I was on the swim team.  I did gymnastics for a while.  I had piano lessons.  I think I even tried soccer and t-ball when I was really young.  We went to Disney World and the beach and out for ice cream.  I even remember getting up early to recycle cans with my dad.  My mom taught me how to sew and I learned at a young age how to make pancakes and eggs.  What does all of that equal?  Time.  TIME.  Whether we were in the car or spending time as a family--I didn't realize how lucky I was. 

So I wanted to be that kind of a parent too.  I wanted to be able to sign my kids up for sports and teach them how to do things and take them on trips.  I wanted to be INVOLVED in their lives, so that later on in life they could look back and say, "My mom was amazing."  Instead, I feel like I spend the majority of my time trying to get Derek to EAT or SLEEP or attempting to keep up with laundry.(Derek changes clothes at least 4 times a day because he can't handle it if he spills ANYTHING on himself and it happens all the time.)  If I'm not doing these things, I'm trying to figure out IEP's or stressing about bills or trying to keep up with artwork and keeping up with ABA schedules.  I'm not Supermom at all. 

Yesterday Tyler was the ringbearer in his uncle's wedding.  I love both of my boys equally and I wanted to see Tyler in all his glory.  He looked so grown up in his tux.  Derek and I watched from up above, where there were no people.  He did such a good job and I was SOOOOOO proud.  But Tyler didn't see me up there.  After the ceremony, he asked me, "Did you watch me, Mom?  I didn't see you."  The look on his face was full of hope.  I told him, "Of course I did, honey.  Derek and I were watching from up there."  And I showed him where we were.  Tyler instantly looked relieved, and it made me wonder how many times I've actually let him down by NOT being there because Derek had a problem of some sort.  I instantly flashed back to the first movie we'd tried to see--Winnie the Pooh.  Tyler had stayed with one of Derek's therapists and I'd had to take Derek home during the PREVIEWS.  And this is why I feel torn.  I want to be there for both of my kids.  And Tyler is just starting to notice that Derek is really, truly different.  I don't want to let either of them down. 

Pretty soon, Tyler will start asking me why we don't do the things his friends do, like go to Disney World for vacation.  Or why we can't fly to New York to see his cousin and his aunt.  Or why we can't even go out to eat at a restaurant.  (Unless you count McDonald's drive-thru.)  It's even getting hard to go shopping.  

It's easy to count the things we can't do and get discouraged.  But I prefer to think about the OTHER things:

We can go to the park across the street and climb UP the slide.
We can go to the pool and jump in the cold water over and over again.
We can eat ice cream until our bellies hurt.
We can have water balloon or squirt gun fights.
We can laugh and smile and play.
We can snuggle and watch movies under blankets.
I can tickle my children until they are giggling uncontrollably.

and most importantly...
I have two beautiful children, that are ALIVE.
I can touch them and hug them and tell them I love them whenever I want.  
I can give them my TIME.

(And now and then, I'll make sure to have "dates" with Tyler and go places with JUST him...)

A Little Voice

From the other room I hear my son's quiet voice singing "I'm a little teapot."  He doesn't get all of the words right, but he gets enough of them for me to know what song he is singing.  And he definitely gets the notes right.  Derek is obsessed with teapots.  He thinks anything that resembles a teapot IS a teapot.  We're talking watering cans and coffee mugs with straw...even movie cases that have pictures of teapots on them (Alice in Wonderland and Beauty and the Beast).  He carries them around like they are precious stones. 

The song, even though I hear it over and over (and OVER) again, does not annoy me.  It is sweet, sweet music.  Because my son has a voice. 

I remember vividly the day I was told that my son might never talk, and that I shouldn't get my hopes up. Between 25-50% of children with autism are non-verbal (depends which article you read.)  I decided that very day that my child would speak.  What's wrong with hope?????

Three years (and a lot of hours of therapy) later, Derek has words.  Sure, many of them are mispronounced.  Derek still babbles nonsense, he sings nursery rhymes constantly, and a good deal of his speech is echolalia (parrot-talk)--but he is speaking non-the-less.  But more and more often, Derek surprises me with something completely out of the blue.  Like yesterday, he was playing with dinosaurs and said something that resembled "Tyrannasaurus rex."  And the day before, he brought me his father's shoe and said, "Daddy's shoe."  He labels things like "shoe" and "ball" and "cup" all the time, but I didn't know he knew THAT SHOE was his Dad's.  Last Friday we watched Finding Nemo.  He pointed to the turtle and said "Turtle."  (I didn't know he knew what a turtle was.)

I'm sure my friends with neurotypical children think I'm insane.  I'll call them up and tell them Derek said this!  or Derek said that!  I'm sure they are thinking, "So what, my kid said that when he was one."  They don't understand.  I've been waiting FOUR WHOLE YEARS to hear this child speak.  Every time he says something, ANYTHING new, it still shocks me because he has been silent for so long.   

So today, when Derek came up to me and gave me a hug, then whispered in my ear "Happy," you can only imagine my surprise (and the tears that followed...)

Love is a Battlefield

I've seen The Exorcist.  It scared the living daylights out of me.  I never expected today to remind me of that movie. 

I'm trying to write this while it is still fresh in my mind, but I'm having a hard time putting it into words.  Today was easily one of the hardest days of my life, and I've had some doozies. 

We arrived at the hospital at 6:30 a.m.  Derek was terrified.  (I tried to prepare him by talking to him about it yesterday, but he had absolutely no comprehension of what I was saying--he looked up at me once, smiled, and then continued singing "I'm a little teapot."  He was not even remotely phased.) 

Arrival at the hospital

Since he had trouble with the medical ID on his wrist last time, I convinced the nurse to put it on his ankle this time.  (GENIUS move on my part--there was some whimpering, some tugging at it, and a few "off" requests, but no screaming, no scratching and, best of all, no BLOOD.)

Ankle ID bracelet

Despite my requests, the hospital staff did not allow me to go back with Derek when he was put under.  It was "against regulation."  They would not allow me to be there when he woke up, either.  The whole procedure took about 2 hours, once they got started.  I was told they had trouble intubating him.  They fixed his cavities, (he got 3 fillings and 2 silver caps put on), they cleaned his teeth, they did fluoride treatments...the whole nine yards.  He has such a hard time at the dentist office, I guess they figured they should do EVERYTHING while he was under.   

When Derek woke up from the anesthesia, a nurse brought him to me and placed him in my arms. She told me Derek might cry a little while he figured out where he was.  Then she left the room.

Recovering

Derek did more than cry.  He thrashed.  He kicked.  He screamed.  He arched his back and flipped out of my arms.  I had to move to the floor because I was unable to control him.  He continued to flop around.  He convulsed.  He tried to run but could not focus on anything.  I looked at his eyes and they were BLACK--his pupils were completely dialated.  He yanked his IV out and suddenly there was blood dripping and a needle hanging from his hand.  Courtney (one of Derek's ABA therapists who came with me to help) dashed over and pulled the emergency cord for help while I kicked chairs out of the way.  A nurse came rushing in and helped get the IV out of Derek's hand.  She also tried to help me control Derek, who by this time was banging his head against the floor in his thrashing.  We put pillows under him.  I have never felt so helpless in my entire life.  Derek was there, but he wasn't THERE.  (Does that make any sense?)  This was not my child.  He was a child possessed.  I could not reach him.  My voice, my touch, my PRESENCE even did nothing to calm him.  I don't think he could hear me.  I don't think he even knew who I WAS.  It was downright horrifying to witness.  I cried.  No--I'll be honest.  I SOBBED.  Finally, after 15 minutes of convulsing like this, Derek just passed out on the floor.  He slept for another 2 hours or so.  When he woke up and we were finally able to go home (6 hours after arriving) Derek was a zombie. 

Poor little man is HURTING.

Those of you with a non-verbal child will understand my relief when I was finally able to get Derek to speak again.  I'm always terrified when my son has to go under that something will make my child regress.  I asked him if he wanted juice and was met with a firm, "No."  I hadn't gotten eye contact yet, but it was a start.  He could still talk.  :) 

His face is puffy, his lips are swollen, and for some reason his left eye is only half open.  I'm not sure what is going on.  He's also acting, well...drugged.  But I guess that's to expected. 

Our day has been spent recovering.  Lots of laying around, lots of cuddling, lots of movies, lots of sleeping.  And just a few minutes ago, he gave me a weird smile and pointed at his mouth, as if to show me something was different.  Sure enough, I could see his silver teeth. 

Life is full of challenges and tests.  Derek and I have been through a lot together.  Autism and everything that comes with it.  An MRI.  An EEG.  An ABR test.  Hearing tests.  3 autism evaluations.  And now 2 of these lovely dental surgeries.   We survived.  That is pretty much the only positive thing I can say about today.  It was traumatic, but we walked away from it, non-the-less.  Each time I go through something like this, I ask myself WHY?  Why is this happening?  Why does my beautiful, wonderful, happy child have to go through such horrible things so often? Is it to make him a stronger person?  Or maybe ME a stronger person?  If so, it's working.  I can handle anything that is thrown at me.  I would fight WARS for this child.  Love is a battlefield, and I'm not about to go down without a fight.    

Hiding from the camera

New silver teeth