Tuesday, April 19, 2011

Life is like.... By Jennifer Butler Modaff

Life’s like juggling—we are all jugglers, just some of us juggle more than others. I have no idea how many balls are in the air anymore. I know there’s marriage, being a mother, work, home life, autism, immune deficiencies, 6 cats, 2 dogs, and probably way more than I am listing. The trick I’ve learned over the years is to just not look up, because anyone who juggles will tell you as soon as you look up all the balls come crashing down.  My mission in life is to help others learn to not look up and just keep juggling, but I guess for that to make sense I had better back up a bit.
In July 2009, my husband and I began fundraising to receive an autism service dog for our son Caden.  Caden was diagnosed with autism in November 2008 (when he was just a little over 2 years old). The day of the diagnosis wasn’t a surprise; we had diagnosed it long before our pediatrician would give us the referral for testing. He was a family friend and honestly I think he really just gave us the referral so that I would stop bugging him and so he and my husband could get back to band practice in peace.  I think everyone else was surprised by Caden’s diagnosis because he didn’t really fit the mental picture that people have of autism. Even his therapists and teachers initially resist the diagnosis but if you spend enough time with Caden you’ll see it---some days more than others but it is most definitely there. Caden moves all over the spectrum depending on what is happening in life, but this is most obvious when he is ill.
Unfortunately he is ill a lot. Both Caden and his 10 year old sister Ryley have primary immune deficiencies.  The ones they have are fairly rare and require a genetic mutation from both mother and father—here’s the interesting part---they have different biological fathers. Yep, when you do the math on those odds, it makes you wonder why I don’t play the lottery. Of course that’s a question I ask myself every Monday morning when the alarm goes off for work.  I suppose it is important to take a moment here to explain immune deficiencies; long story short, they can’t fight infections, their bodies don’t build immunities against diseases naturally or through vaccines, they take more medications a day at 4 and 10 than most senior citizens I know, Caden’s had 4 surgeries and the next is on the docket, Ryley’s had 13 surgeries and she is preparing for number 14, monthly infusions and we spend more time with our specialists than we do most of our family members. Ryley asked me about a month ago, if everyone knew their ENT’s cat’s name and helped their nurses decide where their children should go to college……umm, again why don’t I play the lottery?
So I suppose by now you are imaging that we don’t leave home much—I mean who in their right minds would take kids who can’t fight infection out into public?  Well that would be us. We decided a long time ago that no matter what label we are dealing with, we are going to do everything we can to make sure that our kids get to be normal every day kids. So Ryley is a competitive cheerleader who has a practice and competition schedule that makes healthy kids cringe but she’s good and in the gym she’s not the “sick” kid, she’s the flyer with attitude. Caden will be getting his service dog in August so that he can be out and about just as safely and do whatever activities he decides to pursue.  People who don’t know us usually just see two happy and seemingly healthy kids.  That’s awesome, right?  Well it is until they find out all that the kids deal with and freak out because it doesn’t fit with the picture they have of life threatening illnesses or autism. 
So that’s where our autism awareness campaign came from. Practically we already had a Facebook group and website set up from our fundraising efforts. Philosophically we wanted to try to increase awareness one picture at a time because no one on the spectrum looks like the classical image—you’ve heard this before but if you’ve met one person with autism, you’ve met exactly that—one person with autism. Our goal is to spread awareness by featuring a child, young adult, or adult each week on our Facebook group and website. We post a picture and then whatever the individual or parent wants to share as well as links to any personal pages, blogs, etc. We don’t sell anything or promote anything other than awareness.  If you would like to be featured or know someone who would or just have questions, please contact me. You can find me through the Facebook group or website.

We are also trying to spread awareness of our campaign, so if you are interested please feel free to join our group and share this with others.  We can spread awareness one picture at a time, but only with your help.  Remember I said that the trick to juggling is to not look up-- well the thing is that we all look up or down sometimes and balls go flying everywhere. We all just need people around us to help pick the balls up and then we start juggling again.  


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