Tuesday, October 8, 2013

Sometimes life just gets in the way

Sometimes life just gets in the way. Sometimes I just get in my own way. Its been a long time since I've written anything. Truthfully I stopped writing the more I discovered that both my children were in their own ways coping with a sensory processing disorder. Simply put, children with Sensory Processing Disorder interpret sensory information from the environment in a very different way. Noises might be too loud, tastes might be too intense, lights are too bright, clothes might feel too scratchy and eating chips might cause physical pain both because they are crunchy and too loud. These are just some examples of what a child experiencing S.P.D might experience. Like many disorders it is on a spectrum and we have been lucky to be on the milder end of that spectrum.

 As I sat in a room hearing Wes's new Occupational Therapist announce he was on a spectrum I immediately started to internally seize.....OK scratch that, I freaked out. Any time I had heard the word spectrum, it was always in conjunction with autism, and my mom anxiety went through the roof and I almost couldn't wait to barrel roll out of the room to get back home and Google excessively. Is it polite to stop a therapy session prematurely to announce you need to comb the Internet to find out whats really wrong with your kid even though you are feet from a licensed professional? Probably not, but I'm no Emily Post.

 Dr. Google is a harsh master. Mere keystrokes away, us moms have the answers to any question we might have ever dreamed up. The real trouble is that when you start a search you find stuff you weren't even worried about to begin with but now are. You emerge from your googling session bleary eyed, twitching and convinced you both have the bubonic plague and that all plastic in the house is slowly emitting some sort of gas that will slowly erode all your dental enamel. Also, you clearly don't love your kid, because you have knowingly fed them food additives, let them watch television, fed them sugar, and let them climb alone up to the tippy top of the play structure at the playground. Clearly put? You suck. That little niggling voice in the back of your head that questions your ability to successfully parent becomes a loud fog horn in your living room and shouts for all to hear that you have somehow failed.

 When I was over my little pity party and returned to the OT's office the next week for our next session, I brought my all together too reasonable husband along. He asked all the questions I should of, but couldn't bring myself too, and I was told all the right things. No your son isn't autistic. No this isn't something you did. Yes this is something he will out grow with a lot of hard work. So, I have grappled with where to draw the line. What is funny in my life versus what is disordered in my life. What do I share what do I hold for myself? What do I chronicle what do I wish to forget? Truthfully I started to write here because I wanted a spot to put all the little milestones and stories, but what if some of those stories and milestones are downright ugly? Do I want to remember the tears, the struggles, the painful stuff? I guess I didn't realize until today that I want to remember it all. The heartache. The struggle no one else will know or see. The thrill of seeing your child master something that has been months in the making.

 On its simplest day Wes's Sensory Processing Disorder typically involved only his oral sense. For months after his first birthday he rejected all foods and would in fact vomit or gag if we tried to get him to taste something. He didn't swallow his first baby food until 14 months.On a good day he would eat three cheerios and two bites of yogurt. He wouldn't drink out of a sippy cup, an open cup, or a bottle. Thankfully he never had any issues with nursing, but the strain of being someones sole source of nutrition is a bit daunting.

 We struggled. Lord how we struggled. Last winter Wes's immune system took such a beating and whatever weight he had been able to gain was completely wiped out by an awful flu bug. We saw months of meticulous work completely wiped out in a week. He lost a pound and a half. For an 19 pound kid that's almost 10% of your body weight. He didn't eat for four days. He barely nursed. He was lethargic and the skinniest of the skinny. I will never forget calling his pediatricians office tearfully asking them if we needed to take him to the hospital. The nurse told me to try getting him hydrated. I explained I couldn't get him to ever drink more than an ounce a day from his cup when he was at his healthiest.

"Well you might just have to work with him on that," chirped the patently unhelpful nurse at the pediatricians office.

WORK WITH HIM?! This kid works so hard for things most kids master in mere moments. I was so furious. I felt such a grave sense of injustice for Wes. Why where things so hard for him? Why was this his life? Why did the very people who were there to help us not even understand what he struggled with?

 Wes worked hard though and with every new food he tried, every shred of cheese he got down his gullet, and with every aversion he overcame he progressed. He used to gag when we even brought out food and now he was chowing down regularly on avocados, spinach, balsamic chicken and spaghetti sauce. He tried everything we put in front of him and even if he didn't like it he tried it at least twice without even being prompted. He drank out of a sippy cup and a straw.

It took a year and a half of OT appointments and feeding clinic visits but we got there. Though still under weight he has now graduated OT and is on the weight charts. Simple pleasures I would have given anything for when he was younger.

 Weeks before Wes graduated from his OT program he was diagnosed with multiple food allergies as well as a motor planning disorder which prevents him from speaking most of the time. He still grapples with a yet unnamed gastro intestinal disorder. It is hard to not feel like my child hasn't been dealt a bum hand. He has. Do others have it far worse? Absolutely. I have struggled with how to handle these different challenges and while I would like to say I have handled them with grace and humor I am quite sure I haven't. In grappling with how to best cope with the above diagnoses I keep coming back to what I want Wes to take away from these challenges. I want him to know that hard work never goes unrewarded. More than that though, I think I want him to remember that humor can heal. Looking at the bright side or light side of any challenging situation has been key to maintaining sanity around this house. If you don't laugh you will cry has never been more true. How you face adversity can define the outcome. It's how you rise to the challenge that matters. 

Tonight as Wes devoured string cheese, mac and cheese, rice with bacon and peas, balsamic chicken with shallots, and a dessert of raspberries I could not have been happier. It can be so easy to get lost in all the work that is yet to be done, instead of celebrating the obstacles you have already cleared. So my dear Wes, you are brave, you are strong, you are tenacious and you have never once let anything stand in your way. I'll try my best to never let life get in the way of celebrating your successes. Knock 'em dead kiddo!


AmandaC said...

thanks for the update Lily - I really like reading your blog. Sorry to hear about your struggles but please know you're doing an amazing job, it's obvious, even though I am clueless on the subject matter. Keep writing!

30 by 30 said...

You are so sweet! I have sincere intentions to keep writing and to not let life get in the way! Thank you for the encouragement!