As we approach March, I finally feel like we have settled into the new year. We have a new therapy schedule that is much better for our family, a new occupational therapist that is truly gifted and a new perspective on life that is both joyous and fragile. In all, we are in a good place, but we are always teetering on that ever present line that divides hope and despair.
Not long ago, Matt and I discussed our attempts at envisioning life without autism. We agreed that in every iteration of that vision, it never crosses our minds that it would be better. Truthfully it's hard to imagine Will and our family any other way. Will is just so unique, and there is something about his autism that makes him intense and driven. While that creates some difficult moments at home, I love those qualities in him. He is a natural born leader. Will has also changed how Matt and I approach our lives. We are more patient, less judgmental, more forgiving, and better at pursuing what is truly important. I don't believe my son was given this disorder to make me a better person, and I would do anything to take it from him. Our transformation is simply a positive by-product. For all that is great about my son, some of which comes from the autism, there is also great suffering on Will's part and our part. My goal is to paint a picture of Will that breaks stereotypes for autism while encouraging others who may be walking the same path, but I don't want to mask what is hard about this disorder. I feel like that is an important part of educating as well. A while back at Chickfila, I saw a little boy run up to his mom and say "Look mommy, I got ice cream!" I smiled because it is truly so special to me to hear kids say the most mundane things, but there was so much about that moment that reminded me of the struggle Will faces on a daily basis. First, he does not eat ice cream because it's not one of his 4 safe foods. He does not understand the texture, smell or taste of it not to mention the change in shape and texture when you eat it. Second, if Will has those words in his head, it is a challenge to get them out. The frustration and anger he feels when he can't communicate is unbearable for him and us. And finally, the shared excitement over one of childhood's most cherished treasures, an ice cream cone, is completely lost on him. He has started to spontaneously share interest by pointing items out to us or express excitement over reading a favorite book, but we are in the beginning stages of this. I can't remember the mother's exact response to her child, but it was something along the lines of "Yes, I see it!" Then, they moved on. Maybe she knew how special that moment was, maybe she didn't. It's unfair of me to guess. All I know is that there would have been a lot of yelling and celebrating had that been me and Will. Although I know we are forging a different path through the realm of childhood, I still feel like there are parts of a traditional childhood that all children are entitled to and I wrestle with why my child was denied those things. It breaks my heart when he is desperately trying to tell us something and we can't understand him or when he shows a complete lack of interest in the fun of pretend play because his literal mind just doesn't see the point. Or the moments that he is excited to see his peers only to stop in his tracks because he has no idea how to play with them which in turn causes him great anxiety. And the hardest, the fight or flight response we get from the difficulty of putting on a pair of socks, holding a crayon, connecting legos and many other functions that require fine motor skills. This is a life long disorder, so life is always going to be a mixture of joy and anguish. Each and every day Will fights to find his voice and to interact with a world not built for him. He is "happy" as he has so often told me lately, (He has made huge progress labeling his emotions!) but happy does not always come easy. Our guy is a fighter. He loves and learns in his own way, in his own time. I would love to say I live in perfect peace with all of this. I would even love to say that I am well on my way to perfect peace, but I'm not. Having a child with special needs is not an easy pill to swallow. I'm thankful for God's grace and patience with me as I stumble along and try to understand His plan in all of this, on the days that I feel sorrow and on the days that I try to take credit for the victories in Will's life. So, I leave you with a few lyrics from one of my favorite songs. Never Once by Matt Redman always rings true for our life and is a great reminder that even in the darkest and hardest times in our lives, we are never alone. Standing on this mountaintop Looking just how far we’ve come Knowing that for every step You were with us Kneeling on this battle ground Seeing just how much You’ve done Knowing every victory Was Your power in us Scars and struggles on the way But with joy our hearts can say Never once did we ever walk alone Carried by Your constant grace Held within Your perfect peace Never once, no, we never walk alone
4 Comments
|
Charming, quirky and incredibly loving. Will loves his friends, swimming, the iPad, the Avett Brothers, observing the world upside down, climbing, jumping and being chased.
Archives
October 2017
|