Thursday, April 28, 2011

Lights, Camera, Action!

When UCLA asked me if Michael and I would be willing to be filmed for a local news segment about the ECPHP program and the Neurology Study he's participating in, I automatically said yes.  It is, after all Autism Awareness Month and I'm happy to do anything I can to help raise awareness of autism and the research that is needed to help our kids.  Besides, Michael LOVES when he gets to wear his "net hat" and see Amanda in the neuro lab.

On filming day, I was a NERVOUS WRECK.  I can talk about autism all day long, but when someone was going to ask me questions about my personal experience with Michael's autism on-camera, I knew I'd inevitably tear up.  Which I did.  And they totally used a clip of my tearful footage in the promo for the piece that played before the commercial break.  Up next: sobbing mom and a kid with a weird contraption on his head. Stay tuned.  Hey, whatever makes people tune in I guess.

Michael was amazing throughout the entire two and a half hours of filming.  At first, when it was time for him to have the net put on, he resisted, and I momentarily panicked.  But I pulled out my trusty mommy purse filled with distractions and treats and he had it on a few minutes later.  He had to sit in front of the testing screen hooked up to the electrodes for quite a while.  He got antsy and kept saying "Mommy, when I say THREE we'll be done."  "I'm gonna say three soon."  "I'm about to say threeeeee."  Luckily, he never actually said "three" and he finished the filming with flying colors.  He didn't understand why the camera was there, but he thought it was a pretty cool contraption.  And later when he saw the segment on our TV he exclaimed, "Hey - that's MEEE!!!"

I'm so proud of my little man.  For being so good on filming day.  But mostly for all the hard work he's put in and the amazing progress he's made in the last four months.  He's MY HERO.

The segment aired on CBS Los Angeles on the 11:00 news on Wednesday night 4/20/11 and again on KCAL 9 the following day at noon.  You can see the video and comments on the CBS website here.

Friday, April 15, 2011

Zoloft and Bouncy Houses

Until recently, our lives were limited by Michael's anxiety. The poor kid was afraid of everything - bugs, escalators, new places, new people, tall play structures, freeways, airplane jetways - you name it, he was scared of it. We had a hard time going to malls, parties, new parks, etc. Michael was even petrified of bouncy houses. When he was near one his whole body would tense up. He would shake and scream, and we'd have no choice but to leave. The noise of the blower and the happy kids combined with the hugeness of the structure were simply too much for him to handle. Whenever we went to a party that had one, and almost every kids' party in LA has one, we either had to keep him out of sight of one, or we had to avoid them altogether.  His anxiety became so bad that he just looked stressed out 24 hours a day. His shoulders were raised, his fingers were twisted, and he kept his head down. Even his speech was labored. When Michael was being potty trained about a month ago, his anxiety went over the edge. It became apparent to me that his life, and the whole family's life was impeded on a daily basis. Michael's tantrums and non-compliance at home even began to become more aggressive. He was lashing out with his fists.  It was time to do something about it.

I had always avoided the thought of medicating Michael. But months of intensive behavioral interventions and systematic desensitization weren't solving the problem.  So with research and the guidance of Michael's doctors at UCLA, we decided to give Zoloft a try.  It was a bit of a long-shot.  SSRI's only work in about 30% of kids Michael's age, and even less in kids with autism.  But we figured it was worth a try.  We started at a very low dose on a Wednesday.  By Friday, Michael looked like a different kid.  His shoulders were relaxed, he had more eye contact, and he had markedly less general fear throughout his day.  Even his tantrums reduced in severity.  His teachers and therapists who were blind to the med trial noticed a definite change in him.  But I wasn't convinced...yet.  That weekend we had plans to go to a birthday party where a bouncy house was the main attraction.  This was going to be my test. 

We arrived at the party and I prepared Michael for the fact that there would be a bouncy house.  He said "ok" and walked into the house.  We went to the backyard where he seemed unaffected by the sounds of the blower and the laughing children bouncing inside.  He was timid at first, playing just outside the bouncy house in the yard for the first couple hours.  But as some of the kids left the party and the bouncy house became less crowded, Michael ventured inside with his dad.  He sat inside gripping the floor of the house, but beaming with pride.  Daddy made an excuse to leave the house and before long, Michael started jumping.  I couldn't believe it.  After years of being terrified of these things, Michael was bouncing with glee!  Through tears of joy and disbelief, I captured this video on my iPhone.

Once Michael started bouncing, we had a hard time getting him to stop.  On our way home in the car, Michael asked with such excitement he could hardly help but to yell "Mommy, can we have a party for me with a Spiderman bouncy house?!?!?"  Oh, I'm SO planning a summer BBQ with the biggest, bounciest Spiderman bouncy house I can find!

Our life with Zoloft is definitely a happier life.  We've had weekends filled with parties, and trips to the mall complete with escalator rides.  Michael is now happy to greet friendly strangers in elevators and  grocery stores.  The stressed out, tensed up Michael is a thing of the past.  He greets me at the door when I get home from work, buzzing with excitement to tell me about his day.  He's found his sense of humor, and is now the goofy kid at school who makes the other kids (and teachers) laugh, when he used to be the quiet scared kid who didn't talk much.  He is a little more "hyper" now and has had a touch of insomnia, but I'll take it!  He's not afraid of the world anymore, and he's so much more receptive to the therapies and interventions he's receiving to help him learn things like social communication and comprehension skills. 

I'm so grateful that we've found yet another piece to fit into this puzzle that is Michael's autism.  And we're so lucky that it worked for us.