In the words of Forrest Gump, “Life is like a box of chocolates. You never know what you’re gonna get.” As an autism parent, I can say my life has been a testament to that motto. It’s like you move along in your life, going along a certain path, only to find that two roads diverge in the woods and when you took the road less traveled, you suddenly realized that this road is full of twists and turns the likes of which you’d never seen. Many times, I’ve made it past a particular snarl in our path and found some smoothness to our trail. With patience and perseverance, we got past a tough spot and found our way to some times of consistency and clarity. We’d find our way and have some peace for a while. We’d do this just long enough to get comfortable before someone traveling would find a snake in their boot. Or that somebody poisoned the water hole. “Who would do such a thing?” And, together, as a family, we’d come together and fix whatever problem was thrown our way. None of this comes easily. Life was never made to be easy. Our lives were meant to go along on this snarly trail, full of weeds and snakes, but also feel of beauty and wonder. It’s only through patience and knowing that God has a plan for us that we persevere even when things get hard.
For instance, a few years back my son burned his hands in hot ashes while playing outside. I can still remember the screaming. It was summer and because his hands were significantly burned, he spent most of the summer unable to use his hands and unable to go swimming: something he loves doing. Gradually, as the weeks went by, the bandages were needed less and less. He began to have access to his fingers, his thumbs, and eventually, his hands were completely healed. You can’t even tell anything happened when you look at them, but it happened. As a result, he is now super cautious around anything hot and fiercely protects his brother against any harm. It took a lot of patience–with ourselves and with the healing process–but we made it through a particularly rough patch in our path.
I’ve spent a great majority of my time complaining about life with autism until recent years, when I finally realized that I was fighting something that was not meant to be fought. This road we’re on, the path we’ve taken, happened because my son is meant to be who he is. Some days life feels like a battlefield. There’s screaming, throwing, and more screaming. We wash more clothes than most people because of the number of accidents in a day. We try out more supplements, pray for sleep, and go about each day with hope that he will make it through without anyone bothering him. The part of the path we’re on now has some twists and turns. He’s experienced bullying. It’s the invisible kind that the adults never quite see, but the children do. It angers me that someone would see that a child reacts strongly to certain situations and then recreate these situations for a laugh or so that the child–our child–will get in trouble. Far too much time is with him alone in an office with adults. And perhaps he prefers it that way, especially since not many children know or understand autism. I’ve given up on him receiving mentoring services. I’m no longer fighting that fight. I’m not sure that he really benefits from them anyway. In exchange, I no longer get my work done at work and I never make it to the gym because he cannot stay in after school care past 4:30. Most days I get there at least 10 minutes before then. But summer is coming and with it comes some freedom from the stress of trying to work and knowing that my son needs to be picked up. It’s not his fault. It just happens this way. And I am so pleased with how well things are going at school that I don’t worry about the crap I hear about his day at daycare. I refuse to punish my son for behavior that is directly caused by other children messing with him. And once daycare realized that, they solved their own problem. You see, I waited patiently enough. I stated his case, and I let the chips fall where they may. In the end, they provided additional support. Now we’re in the home stretch. Almost done for the summer.
[bctt tweet=”Do you have the patience to walk the snarly paths of life?” username=”embracespectrum”]
My son talks about teams sometimes. We’re driving down the road and he’s identifying cars rapidly. This is his game. Sometimes I wish for a silent ride, but in truth, I’d much rather point out cars with him than have him frustrated with the ride. He’s learned to entertain himself and he’s included me in his game. Although it’s only him and I in the car, I’m on his team. When he wins, I win. And when I think about it, the same is true in our lives. When he wins (or feels free and safe to express himself), I win. As his mother, I get to see him grow and develop and learn and make it through all of the snarly paths. This morning, he asked again if I was on his team, and I told him I was. I’m not sure if he knows what that means to me. Yes, parenting a child takes patience and perseverance, especially when that child has any type of disability. But your child should always know that you’re on the same team. We go through this lovingly as a family. No, we don’t have it easy. Honestly, who does though? I look at Facebook sometimes and get Facebook envy, but then I realize how often I only post when I’m happy or recognize the fact that no one ever really takes pictures of themselves when they’re unhappy or stressed out. I see all the smiling faces and fail to recognize that behind the Facebook facade, people have real lives with real trials that they, too, must make it through patiently. Thankfully when I post pictures of me with my children, I know that I’m documenting the real us. And even with moments of frustration, I can remember the snuggles and the smooth roads we’ve had throughout all of this.
No one ever said life was supposed to be easy. And if it were, what would that really mean? Life is a sum total of what you make it out to be. As I get older, I begin to understand this concept more and more. The snarls in our path are the stuff life is made of. We were always meant to come out of the trials as stronger people. And my little family is stronger than ever. We’ve fought the battles, won the wars, made it through the entanglements, and we’re prepared to do more. Someone once said that if you never have moments of sadness, you can never fully appreciate what it’s like to be happy. If you’ve never experienced stress, how can you appreciate peace? If you’ve never experienced the twists and turns of life, how can you appreciate it when the path smooths out? In summary, life is full not just of these moments of stress and grief, but of beauty and wonderment. The same could be said for raising a child with a disability. Be patient and work through the stress and grief. Look around the corner for the beauty and wonderment that follows. After all, nothing is more beautiful than seeing your child do something you never thought possible and realizing that you appreciate these little moments more than parents who never had to wait for them to happen. My life isn’t on cruise control. I press the brakes more often than I want to and I often navigate around traffic jams, but I have also taken the scenic route, and I embrace that just as much as I embrace my son fully.
What are you needing the patience to embrace today? Leave a comment below.
Sunny Saturday Link-up
I would love to see you participate in this week’s link-up! I’m adding in something special this week. Come on in!!
This Week’s Prompts
- The most beautiful sound you ever heard
- Secretly do a good deed and write about it.
- A post inspired by the word “patience”
Add your blog entry here!
Originally posted 2016-05-28 10:14:51.