My Son Does Not Have To Hide
I’ve had a couple of moms ask me lately if I consider how my son Jackson might feel about me speaking publicly about his struggles. And they’ve asked if I’m considering his feelings and if it might hurt him if he reads these words one day.
I thought about their question long and hard before I started journaling about him privately for myself. And I thought about it even harder before I put my words out there for others to hear.
I felt slightly attacked and caught off guard and never knew how to appropriately respond. Now I do. So here’s how I feel. And I feel a lot.
Every day I feel happy. Sad. Overwhelmed. Lost. Hopeful. Found. And sometimes I feel all those feelings in the same five minutes.
Jackson’s diagnosis will never be hidden in our home, among our families or our friends or our community.
For far too many years, I dreamt of the perfect, big, beautiful family we’d create. The perfect children. The perfect life. The best jobs. The exquisite home. To have it all.
I hid behind my smile frequently. Wanted people to think I was capable of more than I was. Wanted to please and impress everyone I knew. I wanted to think I could do all the things. Be the mom people looked up to. Make all the money. Make my presence meaningful and beautiful no matter how dark things felt on the inside.
I can hardly believe that girl was me. Gosh, how autism has changed me for the better.
I don’t think any of those dreams are real or honest or feasible for me or for any of us.
Life will never, ever be perfect.
It will always be full of chaos. Of struggle. Of intermittent periods of calm and beauty. Followed by seasons of detriment and fear. Joy and grief. Followed by successes. Then, sometimes, pure tragedy.
Living our life with Jackson is no exception to the struggles others face. Everything we’ve been through just looks a little different. All our stories are different.
We haven’t had the conversation with him just yet. Telling him about what he has and why he’s so different than his friends. Why he gets called names and feels everything too much. Why his body and mind lose control and he says things he doesn’t mean. Does things he doesn’t mean to do.
Why his friends can roll out of bed and go to school. But his morning routine has to be specific and takes two hours before he’s regulated in his own, unique way and ready to walk out the door. And how one interruption in that routine can turn the rest of his day upside down.
He knows he’s different. He’s spoken of it so many times when he gets down on himself. We just don’t feel he’s capable of understanding it all just yet.
But he will be capable. Very soon.
And when he is. When he’s ready for that day. I’ve run through the script over and back in my head a million times.
We’ll tell him he has autism. We’ll tell him he was born with a brain that is wired a bit differently than most of his friends. We’ll tell him that’s why it’s harder for him to find his words. To express his true self to others. And why he feels and smells and tastes and sees things in ways differently than his friends do.
It’s why sometime people say mean things. It’s why he jumps and flaps. Why sometimes people don’t understand him. Why he often struggles with change.
But we’ll also tell him he’s super lucky. Because he loves people really well. That he’s trusting. He’s the most honest person we know. That he’s the most caring and greatest friend to others that we’ve ever met.
And that he’s grateful. The child expresses gratitude for every little thing. And that his gracious heart will help him do big things. And reach people and teach people in special ways. And that he’s worked so hard to overcome so many things in his life that come so simply for others.
And that he’s our hero. Because he works hard and because he has the power and strength to overcome challenging things.
And we’ll tell him he has a kindness imbedded in him that we’ve never witnessed in anyone else in this world. And that he has so many superhuman traits. All of it because he has autism.
He’ll eventually learn how he’s helping other kids and moms and dads through the worst moments of their lives to find the hope in their journeys.
I want him to see that all the hard that’s been exposed leads others to so much hope.
We will tell him that he is our greatest gift. And that he’s a gift to others. That every obstacle he’s triumphed and every milestone met, no matter how delayed, has inspired another child’s family to not give up. And that those qualities should make him so proud.
We’ll tell him he saved us. He saved us from living a life of going through the motions. Not embracing the beauty around us. He saved us by exemplifying the criticality of simplicity. Of intentionality. Of hope.
The easy thing for me to do would be to only speak of the good. Of the days he aces a spelling test or wins the character award or finally scores the soccer goal. When he communicates appropriately or tries the new food or tolerates fancy clothes or makes it effortlessly through a tough transition.
But if I only spoke of those moments, that would give an incredibly false look at our life. And I refuse to hide behind the shadows of what is real and raw and true.
So, we’ll always share. The good and the ugly. And we’ll be ourselves and soak up every ounce of discomfort it brings if it allows him to know that he never has to hide who he is. So that he knows that we all have faults. We all have hard things to overcome. We all have bad days. But we all have really awesome days, too. And that we are so worthy of goodness. All of us.
And we must own the mistakes. The quirks. The hards. Embrace them. We must shine our lights on others through the freeing choice of vulnerability so we never have to choose to sit alone in our darkness.
And I want him to know that being who we are, unapologetically, is how we choose to live. To own our faults and work to discover our weaknesses. Build on them. Ask for help when we’re hurting and offer friendship to those who need us allows us to lead a life of greater fulfillment.
We can’t do any of that if we’re hiding.
And I could just choose to not talk about our life openly at all. That would be a completely respectable option. But there have been far too many people that have helped pull me out of the trenches through this journey. They’ve forced me into believing that keeping my mouth shut and hiding in the illusion of rainbows and butterflies doesn’t help anyone. Especially my own family.
I choose to pay it forward. I will choose honesty and vulnerability every time.
We won’t hide. Take us or leave us. This is who we are.
I’m a mom that still loses my temper at least weekly. I cry more than I smile some days. If I ever speak as if I appear I have it all together, I promise. I do not.
But I will never stop trying. And sharing. And speaking of the heartbreak and the pure joy that autism shines out daily in our home.
It’s far too beautiful and unique to hide. And it helps people. And I never in a million years thought I could help another family going through what we are. But by being vulnerable, I have. And I would have never gotten to this point of acceptance and ownership without the tribe of amazing people that led the way for us. Never.
So, I guess in saying all that I want to say, I pray the words I speak never cause him feelings of inadequacy or pain. But, instead, he’ll feel the courage to always shine his beautiful light and help others carry their burdens. I pray we teach him to seek friendships that are meaningful. That we show him how he can be the changing good in sharing his life with others. All of it. Not just the flowery stuff.
I don’t ever want him to feel like he has to hide. To be someone he’s not to make others comfortable. And that finding a strength in sharing the discomfort leads to a greater peace and fulfillment in his years ahead. Gosh… I hope.
Written by, Lynn Reasons
Lynn is a school nurse and mother to sweet, lover of life, seven year old, Jackson. She partners with her husband as they navigate their journey of autism. Her new life purpose is helping those that feel lost, overwhelmed and lonely, understand they aren’t on this road alone. You can follow her blog on Facebook @navigatingjackson’sjourney.
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