Thursday, April 23, 2009

S's Birthday


Today, my baby turns 7. How time has flown, I still remember like it was yesterday holding her for the first time. I looked into her eyes and fell in love with this tiny person.

It's true that S's siblings didn't seem fazed by her arrival (I recall Julia hiding under the chair in my hospital room). I took out the pictures of our time in the hospital and was struck by how happy Will and I looked. With Em, we were stressed, with Andrew we were utterly exhausted after the delivery. With Julia, we were happy but also very tired (those darned inductions...). With Sarah, we looked happy, well-rested (I was still glassy-eyed from the drugs), and content with this new little person. That night, when my family had gone, my friend Kim came. I was intent upon recovering quickly and knew the best way to start on that track was to get up and walking. Walking down the corridor of the postpartum unit felt like the longest walk ever, but I did it. We had a nice visit. A good way to celebrate the day Sarah came into this world all around.

The many hours feeding her, just the two of us together as the months passed, were so special. She was an easy baby, which was good because it was a difficult time with Andrew just being diagnosed with autism. I would get her up every morning and sing her a silly little song, which always made her giggle and smile.

Sarah is a beautiful little girl who has the most energetic and fun personality. True to form, as the baby of our family, she fights for everything and doesn't want to be left out. She and Emily, though neither will easily admit it, share a very special friendship, too.

Happy Birthday, my "baby" girl. Thank you for coming into our lives and bringing so much joy and laughter to it. I love you very much.

Monday, April 6, 2009

Autism and Jenny McCarthy


Last Friday night, I was getting the kids settled for bed and Larry King Live was on. The subject was Autism, and the featured guest was Jenny McCarthy, she of Playboy Playmate "fame". She and her boyfriend, comedian Jim Carrey, were attempting to make the case that vaccines cause autism. Furthermore, they claimed autism can be cured with invasive bio-medical treatments.

My sheer frustration led me to write the following on Facebook: "A shot did not cause Andrew's autism". I got great responses from friends. "amen, amen, amen. As a scientist, I am so tired of people completely distrusting my entire profession. We do not work for the government to cover up conspiracies!" (from my friend who is a researcher at the NIH). This one is my favorite (from my friend the pediatrician): "thank you thank you thank you...the bane of my professional existence is a stupid playboy playmate!!!!!"

Of course, this appearance has now become THE discussion on autism web-groups. Once again, it's the "us vs. them" mentality coming across and that is a shame because all we should all want is to support our kids.

Here is a FACT pulled from the CDC website:

Since 2001, with the exception of some influenza (flu) vaccines, thimerosal is not used as a preservative in routinely recommended childhood vaccines.

(Source) http://www.cdc.gov/vaccinesafety/concerns/thimerosal.htm

There is no mercury in vaccines now. In fact there hasn't been for 8 years, yet far more kids are being diagnosed with autism. The mercury is gone. So, what's causing the increase in diagnosis now? Hell if I know. And, vaccines save lives.

If Jenny McCarthy is your role model, all the more power to you. I suspect she is making millions of dollars writing her books and getting lots of screen time giving families false hope (and she is not funding their kids attempted "recoveries"). Her "career" had kind of hit a big lull before she told the world that her son had autism, hadn't it?

Some kids develop to the point where the diagnosis is no longer applicable, with or without having gone through bio medical interventions. Some kids never make the gains with or without bio-med treatments. Believe me, if there was something proven to cure my little guy, I probably would have tried it. (Or were we too busy driving to outside speech and occupational therapy and play/social skills group?)

When Andrew was diagnosed in 2001, it seemed our LIFE revolved around autism, getting quality school programming, etc. I think most of us with kids approaching double-digits now realize we were pretty darn hard on the preschool teachers in public school systems that had "one size fits all" programming, since the team actually cared a lot. They didn't have the resources to always do what was best practice. And the speech therapist got my kid to talk- I would do anything for Valerie!

Getting an official diagnosis and intensive services put in place and the transition from Early Intervention to the public school for my family happened during an already *crazy* time. February: Official diagnosis from Mass General (had a provisional dx the 6 months before). February-March: Getting Floortime services and more intensive speech and OT in place. April: new baby born. April-May: school testing and initial TEAM meeting. August: Andrew turned 3 and EI ends. September: Preschool starts. When autism came in our life, our family's life was already pretty full.

I would have borrowed $$$ to finance a "recovery" if one existed. But, the people involved in my son's care, including Dr. Martha Herbert, all told me that the chance that vaccines caused his autism were slim to none. My husband and I chose instead to focus on improving his quality of life. I also started working in the field, helping other families and kids who live with autism every day. I had to let the anger go... and all this bio med stuff DOES NOT have the success rates of rehabilitating a kid who can't walk because of an accident or getting a kid into remission who was diagnosed with leukemia.

Autism can be very cruel. It is also something a family can deal with effectively, or choose not to deal with at all. When our family was one unit, Andrew had friends and kids who wanted to play with him. He was invited to birthday parties, he took a gym class, and had a great team of assistants and behavior specialists. Now, things are different and he isn't thriving at the same level. It sucks to see.

Yet, he is conversant with adults and he is so smart and there are moments when he is very, very happy. He knows he has to say sorry when he does something to hurt his sisters or after he has a tantrum. He "gets" things because his thought pattern is more developed.

Autism is not as simple as Jenny McCarthy would lead you to believe it is. There is no "one-size-fits-all" treatment or cure. I know Andrew tries very hard and we are very lucky to have him, just as uniquely hard-wired as he is, in our family's life.

Saturday, April 4, 2009

A puppy and a butterfly




The kids had a blast at The Giving Camp today. The brother was too shy for his photo op, however! We had so much fun looking at the GC's website and seeing pics of the kids from other camps in 2006. Even the girls handwriting was fun to see and Andrew had a short haircut and you could actually see his whole face :-)