"Look At Me"

"Look At Me"
monotype and screenprint

Wednesday, December 26, 2012

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


  1. I can so relate to what you said about other people not understanding to your day to day life with your son.

    My boy is verbal, with an amazing vocabulary, but he has profound differences in how he experiences life.

    When his environment is tightly controlled and scheduled, he thrives, but without it he shrieks and suffers.

    At school, he does so well and then he crashes dramatically. I fight the "spoiled brat" judgement constantly.

    I'm glad I found your blog. Your art is just amazing! Cheers!

    Lori D.

    1. Thank you! My son is not quite considered verbal yet. He just started really talking this year. A lot of what he says is echolalic in nature--communication is still a struggle. But he seems to be improving daily.

      I agree, schedule helps tremendously!!!!!

      Glad you found me too. :)

  2. I hate those "I couldn't tell" comments too. I try to take them as a compliment- we worked very hard on eye contact too, and on getting her to answer when a stranger talks to her, and on physical contact with extended family, and so many other things. She starts school next year and so many people are saying "oh- she'll be fine" but they don't know her well enough to know that, and I am so nervous! We try to focus on the good things too- the little miracles, but that can be hard some days too.
    It's been a tough year for you- I hope next year brings lots more miracles than challenges!

  3. This is such a great reminder to be grateful for all the things Ben can do. We might not talk to each other but we did go on vacations and such. His tolerance for airplanes and other unfamiliar situations has improved so much! I totally understand feeling alone at social functions. At home I can let Ben work a lot out on his own but at other people's houses its disruptive and can end up destructive so he & I get time away from everyone else.