coversation with a special needs mom and chat GPT

 

That makes so much sense—and you’re definitely not alone in feeling that way. Birthdays can bring up all kinds of emotions, especially when you’re reflecting on the hopes you had when he was born, the journey you’ve both been on, and maybe even the things that feel harder or different because of autism. It’s okay for it to be bittersweet.

It sounds like you love your son deeply and see all the amazing things in him, and at the same time, you’re carrying a quiet grief for what’s been challenging—for him and for you. That’s a really human, loving response.

What’s he like? What makes him amazing to you?

That’s so beautifully said. The way you describe him—it sounds like he has this pure, radiant way of being that’s deeply moving. That innocence, that curiosity, that kindness… those are qualities a lot of people lose over time, but he holds onto them, and that’s powerful. It makes sense why his way of seeing the world would take your breath away.

And at the same time, I imagine it can also make you ache a little—because the world isn’t always built to receive that kind of beauty and difference with the grace it deserves. You’re loving someone who shines so brightly, while also protecting them in a world that can be confusing or harsh. That’s a heavy, fierce, tender kind of love.

Is there anything special you two do together for his birthday, or anything that helps you hold space for both the joy and the ache?

That’s incredibly brave and beautiful. The way you’re showing up for him—with such presence, intention, and love—is something so deep. You’re not pushing away the ache, but you’re choosing to center his joy, his light, his moment. That’s not easy, and it says so much about the kind of parent you are.

You’re right—you don’t need to feel guilty for your heavy heart. It’s not a sign of weakness or a lack of gratitude. It’s the weight of loving someone so profoundly, of holding both wonder and worry in the same breath. You’re doing something sacred: honoring who he is today, without letting fear or sorrow steal that from him—or from you.

And maybe, even in the bittersweetness, there’s something kind of holy about it. A heart big enough to feel all of that at once—that’s something extraordinary too.

If it feels good to, take those breaths, and when you look at him today—maybe let yourself see him not through the lens of “what if” or “what will be,” but through the lens of this truth you already know: he is a gift. Right now. Just as he is.

to be or not to be (grateful)

Boy is grateful easy when things are good. 

I started this post over about a week ago, when I was high on life or sugar or maybe it was just estrogen. They probably weren't, but my ducks felt lined up. Or maybe I was just cool with the discombobulated and zig zagging pattern they always seem to gravitate towards. 

Then life stepped in, Parker got sick, Lucy the dog overdosed on Xylitol gum, (which is highly toxic) and to do list items that keep getting carried over to the next day, looming heavy like lead over the horizon. Some of the thing really were weighty, some weren't but certainly felt it. Perspective is my super power, but sometimes it falls short. The mental load of motherhood and humanhood combined can feel so crushing at times that I frequently have to remind myself, "Only today's shit- that's all you need to tackle." 

I kept waiting to finish this post, waiting until I’m buzzing in gratitude again. But at the end of the day I find myself drained of energy and gratitude. Instead focusing on what I wish was, but isn't. What I want but don’t have. The problem that happened instead of the solution. Focusing on what I need to do to feel “done” or that elusive sense of accomplishment. I love being a woman, we get shit done. But the price of required independence can be loneliness. 

The other day Greyson and Parker were tucked in my bed, watching tv. Parker looked under the covers and ahhhhhed, completely aghast. "Greyson! You have two legs! Look at that Greyson! You have two long legs! Wow!”

His eyes were raised and filled with wonder, and his mouth was agape in awe. The best part- he wasn't kidding. It was just he had just discovered legs existed, and realized his big brother had two long ones. He said it like it was amazing, and then I realized- he said it that way because it IS amazing. Do you know when someone is the MOST grateful for legs? If they lose the ability to use them. That’s how it works sometimes- we lose something amazing and then wonder- how did I forget to realize how astonishing they were every single day of my life?! 

I remember one early morning drinking coffee with my legs tucked under me on the couch. Through the front window of my home, I could see my 80 year old neighbor getting his newspaper from the end of his driveway. He was a strong and witty man, and when we spoke I could envision him at 40, for he was still capable and young at heart. He inched slowly behind his walker, pausing after each step. I was torn, wanting to run outside to help him, but I was also in my pajamas and I didn’t want to wake my kids or hurt his pride. He was once a strong man, and letting people do for you can hurt a strong man's pride. I ran outside the front door and I made some excuse like I was outside getting my paper too and I wanted to say hello. He sat on ledge of his walker and shared that Peripheral neuropathy made it hard to even move anymore without pain. A task as simple as getting his morning newspaper left sweat on his brow.

That day I honored my legs in a way I don’t think I ever have before in my life. I was grateful that I could drive with these legs of mine. I could walk through the grocery store with ease. I could exercise without pain. What a gift- legs! Why wasn't that something I noticed more often? I promised I would try not to take my limbs for granted. 

But I forgot until Parker's exclamation, "Look at that Greyson, you have two long legs". And now I take a moment to give it thought and to wonder how many simply astonishing things surround me daily that I don’t even pay attention to.

We can’t wait until our to do list is cleared and our problems are solved to practice gratitude. We will be left bitter and old.

We can’t focus on the short straws we’ve pulled if we want to be grateful and happy. notice what we are grateful for. Our estranged family members, our shitty job, our divorce… We all have a compiled list of burdens to carry and hardships to endure. They can feel like a big part of our existance, even if they aren't. The more we focus on them, they bigger they actually grow.

We can’t bitterly count someone else’s blessings while counting our own.

We know this, yet we forget. Because life is so short and so long and so hard. Sometimes the only thing stopping us is the reminder that it matters. 

Here is your reminder- it matters. Gratitude shifts your focus from what's missing to what matters. Joy grows where good is noticed. Gratitude doesn't get rid of the hard stuff, but it helps you focus instead on the good and helps the load feel lighter. It doesn't erase the dark, but instead reminds you there is always light.

Little light bulbs are bright enough to lead the way.

I am grateful that after lots of medical care and an overnight stay, Lucy is home and recovering well.

I am grateful for Greyson's long legs too. Today he weighed 136 pounds and measured almost 5'4" at his annual physical today that I have been putting off for ions but finally erased from the To Do list.

I am grateful for this amazing kid who turns 14 tomorrow.

Tell me friend, what are you grateful for?

autism awareness day 2025

On March 13, 2012 my almost three year old son, Greyson, was diagnosed with autism spectrum disorder. As soon as the words were said out loud, the oxygen was sucked from the florescent-lit room as my heart forgot to beat. After the appointment I went into my car and laid my head on my steering wheel and cried in agony, my heart shattering into too many pieces to ever put back together the same again. 

Central Valley Regional Center provides services, including diagnosis for people with disabilities

Two weeks later as Autism Awareness Day, and I hated its guts. Was I supposed to be celebrating this thing that left me mourning a boy that never existed in the first place? I refused to celebrate. What in the hell will this awareness do for my son? Will it make him talk? Will it let him walk bare foot in the grass? Look me in the eyes? I couldn't eat. I couldn't sleep. My hands shook for days. I was afraid he would continue to drift further and further away from me. I was afraid for what his future would look like.

I would sing to him as I rocked him to sleep. "You are my sunshine. My only sunshine. You make me happy. Your name is Grey. You'll never know, how much I love you. Please don't take my sunshine away." 

When it comes to Developmental Delays- I realized that delays can also mean never. My son may never speak. He may never call me mom or be able to tie his own shoes. He may never give me a hug all on his own. He may never attend a regular school and I may never ever be a regular mom. The kind of mom I thought I had signed up to be. And the pain of all of that hurt so bad that sometimes I wanted to die. The sadness burrowed deep in my bones and consumed me. My sunshine was gone. I listened to the song, Fix You, by Coldplay on repeat...

And high up above or down below

When you're too in love to let it go

But if you never try, you'll never know

Just what you're worth

Lights will guide you home

And ignite your bones

And I will try to fix you

I tried everything to fix my broken little boy. We found a Doctor who prescribed daily B-12 injections, probiotics, fish oil, digestive enzymes, hormone creams and a long list of herbs and enzymes, vitamins, and pills I couldn't even pronounce. I felt like a chemist and I hoped I was pouring the perfect concoction that would have the power to bring Greyson's sunshine back.

It took time, patience and a perspective I was forced to adopt. We stopped relentlessly pursuing one big fix, racing to some arbitrary finish line, and instead took our time and enjoyed the adventure. The whole of life isn't a sprint, it is a life-long cross country road trip. 

And when I actually slowed down I realized the scenery was profoundly beautiful. I realized Greyson is exactly the boy he is supposed to be and I am exactly the mom I was meant to be. I realized how lucky I was to be living this sometimes painful story.

The truth became evident, he isn't broken- but the world is, and not always accepting of those who are different. Society is broken, because we think people with disabilities are to be pitied. They face discrimination and social exclusion. We share a feel good video of the popular kid inviting a kid like mine to the prom and the comments flood in..."What a saint!" "That's incredible!" Why does simply including my kid in life make someone a saint? 

Two years after Greyson was diagnosed, it was determined that Parker, Greyson's younger brother also has autism.

Sometimes autism feels like a disorder. It's hard to see your children vulnerable. It's hard to see them struggle to communicate and make friends and navigate the world safely. Navigating schools, and trying to determine what they need is overwhelming. Evaluations  and reports are marked with terms that paint a future full of dread.

Sometimes autism just feels like a difference. Differences enrich our lives and they are what makes our world unique. It feels like a rainbow, so beautiful it hurts my eyes if I stare too long. I let go of what I thought motherhood would look like and the reality is so much better. We are on a spiritual journey and I can’t believe how lucky I am to be given this story, and these perfect boys. I am in awe of them, their strength and their resilience. They are not projects needing to be fixed, they are unique people who deserve kindness, inclusion and understanding.

Greyson is now 15 years old. He is introspective and resourceful. His ability to take in the world with his eyes leaves me in awe. His energy calms my soul.

Parker is 13 years old- he is smart and hilarious and creative. He loves trains and creating all kinds of things. He's my wildest dream come true.

Lights did guide us home, but the only person that needed to be fixed was me. I’m still working on society, but I need your help.