Sunday, July 24, 2011

Precious Time

Given the experience I have had with special needs and the time I have had to get used to the idea, I have been pondering why I still feel such a roller coaster of emotions over it constantly. Sure, autism is tough to manage, but I have been down this road before. And yes, boy number three has more physical movement struggles than I have dealt with before, but there is something else. I thought about this all week and then it hit me: I have a chronically ill child. Yes, autism is chronic, but what I mean is: my third born feels physically sick more often than not. I am talking about the extra diagnoses that make him medically fragile.

Some of the things we deal with are reflux, gastroparesis, food allergies and fatigue. On a daily basis, he may feel too full after just a few bites of food, might have a burning throat or upset stomach, or be overly tired while his peers run circles around him. It is heartbreaking as a parent to see your child in pain so often. Our medicine cabinet is much fuller than I would like. We have tried many medicines to control the symptoms as well as added some vitamins to the mix. His formula is a special kind that requires a prescription as well.

And then there is the great unknown, and the fact that his collection of symptoms suggests a larger, all-encompassing diagnosis that has so far alluded doctors. The immature gait, the unexplained fevers, the slow stomach, the lack of energy, it all adds up to something, they say. "Something"- and yet no one knows what.

At certain times I have expressed my desire to appreciate every day, but I doubt I have ever written with brutal honesty this simple fact: I do not know how long my child will live. Yes, his ailments may turn out to be pesky things that will improve some with time, and he may learn to adapt and live a full life. Without a clear diagnosis, we live in doubt and sometimes fear. I do realize we are not alone in this, and that many other parents, TOO many other parents, share this experience. And yet somehow it has been hard for me to identify my feelings about it or want to share.

This is why I drop everything and lay down with J.C. when he wants to cuddle. This is why I sneak into his room to look at him sleeping at night, or why I sometimes am secretly excited if he wakes up. This is why I do enjoy my breaks but miss him after a few hours away. He calls to me... time calls to me... more precious when it might be too short.

Friday, July 8, 2011

For the Love Of Twitter

Several months ago, at the urging of a friend and also driven by a willingness to help my favorite local non-profit, I joined Twitter. I thought at first that I would just get my feet wet, learn the ropes, and share pediatric feeding or autism tips occasionally.

I certainly did not expect to quickly connect with many other people who not only wanted to exchange information but be my friend. Taking that one step further, it was not long before a group of us decided to meet in real life, and we continue to support each other via tweets, whether it is someone needing advice or simply making each other laugh. Did we get along just as well in person as online? Yes.

Something invaluable to me has been connecting with other people within the autism community. There is simply no better forum for fast, appropriate exchanges of all kinds of information on the spectrum. It is also so nice to tweet out a "having a rough day with kids and autism" kind of thing and have a warm response of, "I know how you feel" and "Hang in there!" I feel like I get similar support on Facebook, yes, but there is not that "sharing with the world" feeling by any means. There is something liberating about saying what you know or feel and knowing it is "out there" for anyone to read. I have connected with so many bright, positive and productive parents of children with autism this way. And, as a mom of two kids on the spectrum and with other medical issues at play, some days, sadly, Twitter is the only adult interaction I get.

Some critics of Twitter will say, "Yes, but do I really need to know that you ate a sandwich for lunch?" To this I say, no, most people on Twitter are not sharing mundane tidbits like that, but if they do, then yes, it matters. That is part of the point. The every day things, the meal you enjoyed, that movie you just saw, or the song you are currently listening to are part of what makes you unique. If you balance that with good information, positive interactions and support of others, then followers will value hearing about the little things you love, too.

I can't fathom that my interest in these connections I have made will diminish at all. In fact, I think that with each day that passes, with each new diagnosis (or heartbreak over the lack there of) with the kids, I will crave this mix of fun and intelligent exchanges even more. Don't have Twitter yet? Try it... with an open mind... and watch what happens. I predict only good things.