Hello World! I am just not comfortable and mom is struggling to figure out why. She doesn't realize (yet) that I have a lot of sensory issues and tummy problems. I forgive Mom though. She picked up on my cues and saved my life at 23 days old. After 3 straight days of doctor visits, Mom broke down crying, explaining that I hadn't peed in 24 hours.
Who are you? Brady, I really want to know. Why? Because I’m your mother. Don’t all mothers want to figure out their children as soon as they enter the world? We seek immediate solutions to the seemingly easy stuff like why is he not latching on well? Why is he vomiting across the room after every feeding? (Brady had pyloric stenosis and had emergency surgery at 23 days so that food could pass into his small intestine.)
When you have a special needs child, you are even more determined to get to the bottom of every single issue, especially the ones you think are ‘solvable.’ But it’s the unsolvable ones that keep you up at night – researching, silently grieving, and tossing around countless ‘what if’s’ in your head. You fuel yourself with momma bear adrenaline in your endless quest to uncover answers and then….all at once, you feel overwhelmed by all the unknowns. You realize there are no simple answers or quick fixes, and you feel like you are melting under the weight of it all. Luckily, the love you feel for your child outweighs all obstacles because the journey will be a long one and certainly not for the faint-hearted.
Out of my four children, Brady is the one who has changed me from the inside out. Days after he was born, I was struggling to understand his needs. He hardly slept and cried incessantly while I did all I could to satisfy him. I couldn’t figure him out quickly and it caused me great anxiety. My inability to soothe him made me not only feel ineffective as a mother but also made me feel disconnected from him and utterly exhausted. I wasn’t bonding with him as seamlessly as I did with my first two children. Gradually, when I didn’t expect it, I would piece some of his clues together. By the time Brady was 6 months, I noticed how he liked the pressure of his Björn carrier. While I held him on my front side, I would notice how his body would tense whenever someone would get too close to me. I tried to shield his eyes when someone spontaneously wanted to make small talk so he wouldn’t be frightened. At the time, I didn’t know why certain things (strangers, sounds, bright lights) would bother Brady but he never hesitated to communicate through cues (his eyes, body, cries) that these things were upsetting to him. During his first year of life, I went from being exasperated and overwhelmed by him to being attuned to him in a most intimate, motherly way.
Brady, although you could not speak, you communicated, and I listened –despite the exhaustion of it all. You helped me evolve and gradually become the mother you needed. It took time (and an incredible amount of patience) but look at the progress we’ve made. It took me reaching out to friends, therapists, doctors, and teachers. I had to jump out of my comfort zone thousands of times for you, and it was so worth it. Completely worth it.
Brady, who are you now?
I’ve never met anyone like you, Brady. You are unabashedly outspoken, so unaware of how your words may hit other’s ears. Although I’ve been a bit embarrassed at times by the words that fly out of your mouth, I’m so grateful that you found your voice because it’s helped me find mine too. You are bold and never hesitant. You openly share your off-the-cuff thoughts and I’ve learned to listen for meaning and intent.
My phone rings a couple of Saturdays ago; it’s Brady calling while I’m at a store. I answer.
“Mom, I wrote something for you.”
“Really?” (Writing is a difficult, non-preferred activity for him.)
“It says I don’t love Mom anymore.”
“Okay, well, I am happy that you are writing.” (It’s important to recognize the skills he’s using.)
“Mom, you need to come home.”
“I will come home soon. I’m almost done.”
“You’ve been gone for 42 minutes, almost 43.”
“Yes, I know. I will be home soon.”
“Come home, okay? I miss you but I’m mad.”
“I understand. I will see you very soon. Goodbye Brady. I love you.”
(With Brady, I’ve learned to focus on his intent and not on the exact words he is using to express himself.)
Although you enjoy art, I cannot tell you WHAT to draw or paint. I cannot tell you TO paint. When you do create art, I find it beautiful and I want more of it. But you only become an artist when you feel compelled to draw and I have no control over that. I praise your art and you smile and hug me. I praise your art and you tell me it’s not your best. You and I have different lenses, Brady; this much I do know. You are helping me to adjust my lens so I can perhaps, even for a brief moment, observe some of the world just as you see and experience it. It helps me understand you more.
“Mom! Look at those GORGEOUS flowers!!”
I am beaming because you said gorgeous, and so I look and notice their radiance. But then I look at you and notice your radiance too. You have blossomed, year after year. You have given me so much hope. Life is full of stunning changes. Even the hard changes can yield something previously unseen, and revealing something beautiful if we let it.
You love water. You are fearless in the water, determined to get to the bottom of the deepest part of the pool. I noticed you liked to dive and asked you if you wanted to become a diver. After all, you climb up trees and never seem to mind the height. Although I never envisioned you as a diver, you have really opened my eyes to your surprising capabilities. So, you try a springboard class with others around your age and make the instructor laugh as he leads everyone in stretches before water time begins. “Stretching is so boring!” you declare, and everyone chuckles. The instructor explains how it loosens your muscles up and prevents injuries. Silence follows as everyone, including you, reaches for their toes. Then I overhear you loudly proclaim:
“I’ve got $5 dollars. That’s more than my siblings have. I’m the richest.”
The instructor smiles and replies: “What are you going to buy with all that money, Brady?”
“Some butter and fresh milk.”
(giggling from others)
You tell me the water is too cold and you won’t be participating any longer. I see you shivering and understand how uncomfortable it must make you feel.
“We will find a warmer pool, Brady,” I assure you.
I enroll you for lessons at a heated pool that advertises 85-degree water temperature. The first day, you jump in and smile from ear to ear as you ask the instructor: How hot is this water?
He says it’s 87 degrees today. You look pensive and matter-of-factly retort back: “Actually, it’s 91 degrees.”
You aren’t an easy kid, Brady. You seem to filter things differently and it can be hard for me to understand why something keeps circling back into your mind, but I can’t control your mind, your thoughts, your immediate reactions. I can only listen and thoughtfully respond with the parenting tools I’ve learned on this journey. I know you don’t really listen to me most of the time — that you like having me repeat things because it is somehow calming to you. I have learned to not let this bother me so much. I just repeat what you need to hear again.
Who are you meant to be, Brady? I cannot answer that because you are still showing me who you are. You are guiding the ship and I’m here paving the way, pushing open the necessary doors for you. Sometimes, you steer the ship impulsively into a storm but then I’m surprised that the storm quickly blows over – that we actually made it to the other side. You’ve been teaching me as much as I’ve been teaching you. Sure, you make me anxious and worried. I think it is that highly unpredictable piece of you. However, you’ve taught me to let go of my expectations of what will come and how you will respond.
I used to worry about whether you would ever catch up in academics, whether you would go to college, get married, be able to safely drive a vehicle. However, years ago, when you were little, I wondered if you would ever say more than a few words, whether we could ever have a meltdown-free outing as a family, whether you’d be able to befriend your siblings and if they would ever wholeheartedly like you. I wondered if your siblings could ever truly understand your autism, and if the experience of growing up with you could shape them positively despite the turmoil and frustration we all felt at times.
But you’ve taught me not to worry about such things. You’ve taught me to have faith that it will work out in ways that I cannot foresee. I mean, look at you now, Brady. Speaking clearly, beautifully voicing your needs and opinions, asking the best questions ever:
“Would you rather stand next to a really bad guy or cuddle with 3 large dinosaurs?”
These are the questions that make us smile and scratch our heads. They show your creativity, your untapped potential. Your mind may always be a mystery to me, but it is clearly churning with unique ideas while absorbing lots of fine details that most miss.
What do I want for you, Brady? I want you to find your way, to discover your own self as you’ve been doing all along. I want you to love yourself and feel as calm in your own skin as you felt when I held you tightly as a baby. I want you to forgive your shortcomings, because we all have them. I want you to embrace your gifts so that you can make the choices in life that are best for you. Want to become an outdoorsman? I will support and help you. Want to go to college? We will find a way. Want to be an expert fry maker? Let’s figure that one out.
I’ll do my best to set aside my ego, my expectations of what your life should look like, and I’ll look to you for how you want to steer this boat called life. For now, I watch in awe as you continue to unfold at your pace, and slowly discover who you are while giving me clues along the way. It is your life to live, Brady. I’ll do my best to help, when you need it. I am always by your side.
Your dedicated advocate,
Mom
As you know, I’ve had very similar thoughts and have come to the same conclusion – be who you are, and I’ll help in every way. Show me. Guide me, and I’ll do the same. Brady has the best mom! I know too many people who didn’t pay attention to cues at young ages and later had more difficult struggles in understanding their kiddos. Also, something this post made me think about – I was surprised by how many things (that don’t matter) I’d hoped for while pregnant, like athleticism. Doesn’t matter! I didn’t realize how I’d hoped for it until I realized that’s not what I needed to hope for, if that makes sense. Another great post, my lovely friend! And “who are you?” — so true with people too right? I mean our peers and relationships show us who they are. We need to believe them! <3
Tears in my eyes…