As I sat down to think about what I wanted to write today I wasn’t sure. It’s been a really tough few weeks. Our son Max has Autism. He is 8 years old, and as a family we have all come so far from those early days when he was newly diagnosed, Maxim most of all. These past few weeks though have reminded me of the early days.
When Max was younger, he was struggling. I know you may be thinking, “All toddlers struggle. They don’t call it the Terrible Twos or the Horrible Threes for nothing.” But for Max it was different. He was really struggling. He spent more time melting down than I think he even slept. When he was home, he was unhappy, and I was scrambling to try and help. He didn’t have many words and wasn’t able to express himself in very many ways.
I can’t imagine what that feels like, to have words and thoughts stuck inside, trapped like wind in a tunnel. Thoughts and feelings that start as a gentle breeze, but with nowhere to go, remain confined until a storm, loud and thundering, powerfully dizzying, rages and drowns out any efforts to bring peace and calm.
Back in the early days Max would rage so hard that I would go to gently put a hand on his chest, and before it landed I swear I could feel his heart pounding. As he turned bright red from the effort of screaming on the floor I’d pray.
“Help me to help him. Show me what he needs. Let my calm flow through his body with this touch.”
I could feel his pain so powerful and strong, but didn’t know how to stop it. The wind and the storm would rage until he was too tired to scream. Then regret set in. Quiet tears that shook his body as he snuggled in for hugs.
We worked so hard to hear and listen to Max as he tried to show us the way with very few words. Parenting classes with behaviorists, collecting information on what could be causing frustration, visuals, schedules, timers, countdowns, consistency, nutrition - we were trying. So was he.
Eventually the wind died down and the storms subsided. We found more and better ways to support Max. We trained our hearts and ears so we could hear what he needed without a word being spoken. We started to listen to the music of his actions and dance to the sound of no words. And then, eventually, slowly, ever so slowly, more words came.
Our hearts rejoice, even still, with each one he utters, but contrary to what I had imagined, the squalls did not quiet with their presence. Even now with hundreds of words, without the ability to use them with ease, the wind continues to blow and the storm silently simmers.
Over the past few weeks we have been watching Maxim’s calm slip away and it has been harder to hear the music of his actions. There have been tears and biting, kicking and aggression. The storm grows bigger and we can’t seem to calm it.
“Why can’t I figure out what he needs? Why aren’t the visuals and the timers and the positive reinforcements working? Is he getting sick? Is he being treated kindly when he’s not here? What is causing this now? Is it me?”
My own wind begins to howl, “This is Hard. This is frustrating, and aggravating, and So. Darn. Hard!”
But then I hear his little voice, “Why does. Your heart. Hurt? Let me kiss it.” He smiles, “I want. Make. Your heart happy.” And then I cry.
You see, even in the hardest moments all Max does is fill my heart to overflowing. I am unworthy of this boy so pure that nothing is hidden, not his anger or his love. And so we keep trying. We will keep working to listen with our hearts and give this boy everything he needs to quiet the storm. We will make sure at all times to keep our own storms at bay. As his wind whips and gains momentum, my love will thunder louder. Together we will find a way to stand strong until the gale becomes a breeze that quietly reminds, “No matter how strong the storm, you are unconditionally loved.”
You are an amazing vessel of love, kindness, strength, and devotion. I am honored to read your missives.
Sending you love right back. Lots of it. Thank you!❤️💕💗
Erica, I can’t begin to tell you how your words touched me to my core. It’s through my tears that I tell you that your words are poetic, your struggle so felt, and your love for Max boundless. I know how hard it is to separate your love as a parent for a child from your responsibility to this special child. I hear you. Sending positive thoughts of love and peace to your special family quest. We understand.