Dear reader,
I don’t think we talk about our fears enough. I know when I do, as a mom to a nonspeaking boy, my fears are often brushed aside. Or downplayed. And I think it’s because fear makes people uncomfortable. Or they want to fix it. But there isn’t always a clear solution to fix them.
Sometimes…they just are.
Acknowledging our fears forces us to go to that uncomfortable space. But the older I get, I am learning to lean in. And share. Because that’s when the healing happens.
So here goes…
In a few weeks my 12-year-old nonspeaking boy with a big diagnosis will get on a bus and go to school.
And as his mom, I get so scared sending him anywhere alone. But I have to trust. I have to trust in good and kind and grace.
I have to trust that people will know the yellow haired boy’s name is Cooper because he won’t be able to say it under pressure.
I have to trust that they will ask him if he wants a drink of water because he won’t think to ask.
I have to trust that they will give him dignity and wipe his mouth after he eats and adjust his waistband after he goes to the bathroom.
I have to trust that they will listen. And lead him when he needs to go somewhere. And hug him when he’s overwhelmed. And sit on the floor with him if he’s scared.
I have to trust that they will see him, believe in him, and want to protect him.
I have to trust because he can’t tell them if he’s hurt or if someone is mean to him.
I have to trust because he adores school. I know that he will be ready and waiting for the bus 20 minutes before it arrives.
He will point and gasp when it pulls into our driveway.
And he will have so much to say. So much to share. But he won’t be able too. Because he isn’t able to verbally speak.
So, I will write his teacher a note. Cooper and I will write it together.
He swam everyday this summer. He even had a sleepover on our boat. He wants to go to an aquarium and see a whale and fly on an airplane. And he has a brand-new puppy.
He loves paper. It’s a huge motivator for him. Brown paper is his favorite. And Christmas. He had a pretend Christmas party on August 25th. With presents, decorations, cookies, lights, Santa, and a tree. We counted down the days just like Curious George did in Curious George Christmas.
He cannot put his straw into his Capri Sun Pouch. Please help him. Please offer him water too. And if he gets scared ask him about fire trucks. Or Dora the Explorer. She is his friend. His brothers are his best friends. And Peyton too. She is in the class next door. They are drawn to each other like magnets. Please don’t break their bond.
He adores white boards and if he trusts you…he will ask you ever so quietly in his own way to write down his dreams with brightly colored markers.
Please listen to him.
He would tell us all this stuff if he could. Like I used to do when I would write a paragraph about my summer vacation. But he can’t. So, I will. I will tell you. And I will trust that you will listen to me.
Listen to his sounds and his signs and his hands. If he likes you, he will hug you. And tease you. But you have to give him time. Please give him time. Time to be himself.
Today I will trust once again. I will trust strangers with my most precious gift. I will hold my breath and pray the phone doesn’t ring. And I will say to the world that raising a perfectly imperfect boy in a world that doesn’t understand him terrifies me. I am scared every second that he is away from me.
But him, he’s so excited.
Oh, and the I Love Toy Trains Store in Indiana! Ask him about the trip he wants to take with mom. Not Dad. (Which makes us all laugh because we know Dad is a tougher sell on gift shops than mom.) That’s on his bucket list right now.
-A scared but trusting mama.
If you need a smile, watch this video of Cooper and I chatting. It’s the most he has ever communicated with me verbally and my responses are genuine.
He works harder than any person I have ever met to communicate. I am so proud of him.
Thank you for being here and learning alongside of us.
Please visit my website, www.findingcoopersvoice.com, to learn more about our story and family! I am filling up my calendar with public speaking requests so reach out if you are interested. I speak to schools, medical professionals, families, centers, etc. You name it! I just love to share and help.
This resonates with me SO much. Being dismissed is a trigger for me, and so I tend to internalize my fears about my autistic son starting school, because folks have tended to placate me when I express them. Thank you for putting into words what so many parents of neurodivergent children feel.
And thank you for sharing that wonderful video! Cooper is so sweet, silly, and observant :)
I can only imagine in the tiniest way how you must feel this worry trusting him with others. My son went on a multi-stop adventure with a few friends and a dad of one of the boys yesterday. Normally I pack a water and some snacks, but I was just off yesterday and sort of trusted someone would look out for him.
He’s 8, and in the middle of testing so I don’t have a diagnosis, but food is hard and he gets overwhelmed. He never ended up wanting the few snacks they got (just not foods he’ll willingly eat) and they gave him a soda but never checked in about water or something else to drink.
I told him beforehand it’s ok to say he’s done and I’ll pick him up. He did end up needing go home early. When he saw me, he deflated. Just let go of everything he’d been trying to control and was instant tears. He was hungry, and thirsty, and said he tried to explain and tried to hold in the overwhelm - to act like a boy who is supposed to be out having a good time should act. He was out in the world and felt shaky at the idea that not everyone takes care of him like I do.
I’m probably making too much of it. But, magnified by non speaking and people who are (mostly) not mean or malicious not taking care of your boy, almost as if by accident, it’s a lot. My heart goes out to you.