Saturday, March 15, 2014

Brain Tumor or Autism?

I don't want to post Molly's little bit of talking and singing now, as you would not think that it was very impressive. Let's be honest, most 2 year olds speak better than she does currently, but it's the hope of progress that keeps us going. I need to give a few back ground posts and figure out how to upload pictures and videos first. THEN, once you see how hard talking really is and have walked in our shoes for a bit, I'll give you the good stuff.

Molly was just about to turn two years old and Jack was 3 months old when we got the devastating diagnosis of autism. 15 years ago this was an extremely rare occurrence. I couldn't believe our "luck" when 1/10,000 children were given this diagnosis and our beautiful like girl has THIS? All I knew at that point was that Rainman had autism and my daughter was NOT going to grow up acting like that! "Judge Wapner". However she was excellent at gathering like objects (fists full of pencils, or markers, or all her dog stuffed animals) and she did love to watch cartoons for hours.  When a friend asked "Does she love to help with the baby and go get a diaper for you?" I thought to myself- "Heck no, she wouldn't even understand me if I asked". It felt like I could speak Russian to her and get the same lack of response. Of course, in hindsight, we should have known something wasn't right, but this was before everyone knew about autism and she was our first child. Every year since, I have felt like a part of a much bigger dysfunctional family as quickly the stats changed from 1/10,000 in 1999 to 1/500, to 1/250, to 1/100 diagnosed on the autism spectrum.

Here are todays grim statistics via the Autism Speaks website:

- Autism affects 1 in 88 children and 1 in 54 are boys
-Autism prevalence figures are growing
-Autism is the fastest-growing serous developmental disability in the US
-Autism costs a family $60,000 a year on average
-Autism receives less than 5% of the research funding of many less prevalent childhood diseases
-Boys are nearly 5 times more likely than girls to have autism (see how lucky we are to have a girl on the spectrum?)
-There is no medical detection or cure for autism

As I think back on those early days, I recall feeling overwhelmed by it all. We were told by the pediatric neurologist that Molly either had a brain tumor or she had autism. I truthfully wasn't sure which one to pray for. A brain tumor you can at least surgically remove, right? Autism was forever and the books were not giving us much hope. Neither was Rainman. I wanted to be with her when she went in for her MRI, but as soon as her tiny, little 22 month old body was put under and started going into that giant tube.....I lost it and started bawling. Brooke and I had to switch locations as he came in to support Molly and I went out into the waiting room full of old people who were there for their MRI's too. I could feel their empathy and questions for why we were there. At the time, I didn't have the heart to notice what life perils had brought them to the same sad venue.

As you know, there was no brain tumor, and we started down the long, long, expensive, no real answers path to where we are today. Gosh I'm glad that we are here and not there.

5 comments:

hollysue said...

Here you are!!! I am anxious to hear more about Molly's progress. It is already to hear the thens and the nows in your writing.

Kathy Bell said...

Thank you Holly! "Here you are" makes me laugh as I'm not even sure how to send this blog to my parents who aren't on FB? WHERE am I? :)

Unknown said...

One of my gifts is that I reach for comprehensive conclusions about complex subjects of which I know little or nothing about. When I see it in others, I recognize it for the foolishness that it is, because of course I can do it better than them. I recognize this in the pronouncements of "Autism Speaks". So here is MY comprehensive conclusion about the complex subject of autism of which I know little or nothing about:

Just as any sufficiently advanced technology can become indistinguishable from magic, so too can any sufficiently advanced "evolution" become indistinguishable from a developmental disability.

Kathy Bell said...

There is a wiseness to her soul as well as an innocence that is refreshing. I have often wondered if she was sent as a gift to help if there is an apocalypse. Yes, I've watched hours upon hours of that show on PBS. Can she communicate telepathically with aliens? John, I have wondered all kinds of seemingly crazy things....but maybe they aren't so crazy? Or maybe her autism doesn't fall far from the tree. :)

Unknown said...

PBS show? I'm near a TV for the first time in 8 months, so I'll have to check it out. I have to apologize too, because I'm jumping the dialogue here to theoreticals when the blog is about your experiences so far. Keep it coming, and I'll let the theoreticals form as I learn more from your experience. Thanks Again, and don't let me waste any more of your time in kindly responding to all my bipolar 3 blah blah blah. : )