Friday, July 12, 2013

The Light at The End of The Tunnel; Just Keep Running!

     On the off chance I actually have a regular reader, I apologize to you. I have not been what one might call a "regular writer" this past month or so and that's not for lack of eventful happenings. Actually the opposite. I wish I could say summer has us bogged down with crazy activities or we are spending each day exploring new places but the hard true of it is that Xander's been getting worse this summer.

This is a snapshot from a 
video we took of him screaming
during a session.
 (noise warning!!)

     Worse?! What exactly does that mean? Well its kind of a complicated thing to explain, but over the last few weeks we have seen a rapid decline in almost every area. My bright clever little boy isn't labeling anything anymore, hell we can only get him to say 3 words and that's like pulling teeth! The screaming and obsessive compulsive behaviors have gotten worse too. Sure it's kind of cute that his little animal lines became parades around the table, but the fits over moving even one toy aren't normal, even by autism standards. His anxiety has always been an issue but that's amped up too. This is only scratching the surface of the new challenges the last two months have brought but no one wants to read a pity party post. Long story short, his developmental pediatrician thinks he has a mild case of PANDAS or PANS and has him on antibiotics. Its a very controversial diagnosis, as some doctors think its a load of crap but if a month of antibiotics might help, I don't see the harm in try the treatment. She doesn't think its a permanent case but its still a scary issue.

     We (my husband and I) try to avoid any thought process that starts with "Why did this have to happen to us..." but for the last few weeks its been that nagging thought at the back of my mind. We try to treat autism as much of a blessing as possible; we have become a strong family because of it not in spite. And we never look at it as something wrong with him or in need of curing, but this sudden onset of intense symptoms just doesn't feel right, if that makes sense at all?

    We are all still adjusting to Alex's new work schedule that basically puts him 10-12 hours ahead of us as far as how his internal clock perceives time. But with Alex home sleeping during the day, when Xander goes down for his nap due to the heat, I get to have time to myself! This is something that is truly rare in my life. With his heightened clingy-ness I can't so much as leave the room or run upstairs without a screaming fit or him chasing after me. But for about 3 hours everyday I get to be Devon. Not Mom, Wife, Daughter. Just me. And that feels good. I start to forget how that feels after a while. Best part is I get an escape from autism. Don't read into that, I don't mean from my son or from his challenges specifically, but just the world AUTISM. I don't have to think about it, it doesn't need to be the subtext of everything I do like it is the rest of the day. I don't need to worry about what's next and why he's getting worse. I spend far too much time with that word bouncing around in my head and I need an escape.

    So I run. I started a few weeks ago and every day I've been trying to get out to let out some steam. I joined a gym, due to the heat, it wasn't healthy to run in the middle of the day when he naps. But luckily we have a minor break in the weather and its beautiful to be able to kill myself running up a hill just to see the
view from the top of a hill behind our house
with a loose gravel road and stream. I love where we live!
view from the top! I sent myself the goal to run a 5k on October 12 this year for a local autism school, they are raising funds for a playground. That's the day after our fifth wedding anniversary, so I thought it was a fitting day to celebrate autism, my marriage, my family and my health. I have a wonderful group of friends, new and old, who are supporting me with this new challenge and I honestly feel like I wouldn't be handling this new situation without getting out there everyday. There is nothing harder than watching your baby lose the words he fought to hard to gain. But we aren't giving up, gradually things will improve and we will get our Xander back. But until than we just need to keep pushing til that next ten feet, then the next couple of yards, half a mile and before we know it we will be farther than ever before!

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