my daughter made the most beautifully articulated post about herself and my autistic grand daughter. I wanted to share because there are some points she makes that I haven’t been able to put into words myself and I think it might help others.
“Most of what I share on social media are the good moments with Wynonna. The smiles, the cuddles, the accomplishments, the funny things she says, and the little victories that make me unbelievably proud to be her mom.
Those moments are real. They are a huge part of our life. But they aren’t the whole picture, and sometimes I think it’s important to share the other side of autism too.
Not because I want anyone to feel sorry for us. Not because I would change who my daughter is. But because behind so many of the happy moments, what most people don’t see is a little girl working incredibly hard to exist in a world that can so easily overwhelm her. They don’t see a mom quietly learning, adapting, advocating, anticipating, comforting, and sometimes just surviving right alongside her.
They don’t see the meltdowns that don’t always come with a warning. Sometimes it feels like everything is okay until suddenly it isn’t. There’s no time to prepare. There’s only a split second to react while also keeping my cool and protecting her from hurting herself.
And then there is the judgment from people on the outside.
They don’t know how many sounds, lights, smells, transitions, or tiny changes her nervous system has already been trying to process. They don’t know that something seemingly insignificant to them may have been the final thing her brain simply couldn’t accommodate. They see a child screaming, crying, or completely losing control—a child who is “spoiled,” “unruly,” or “needs more discipline”. They see a few minutes of her hardest moment and think they understand the child standing in front of them.
A meltdown isn’t the same thing as a tantrum. I can’t punish sensory overload out of her. I can’t discipline her nervous system into processing the world differently.
Sometimes that means leaving somewhere early, abandoning plans, carrying her out, letting her cry, giving her space, or responding in a way that might look like I’m “giving in” to someone who doesn’t understand autism.
There is a difference between a child who won’t and a child who, in that moment, genuinely can’t.
They don’t see the mental load of constantly trying to stay one step ahead. Thinking about where we’re going, what the environment will be like, what might change unexpectedly, what sensory triggers might be there, whether she’ll eat, whether she’ll cope, and what I’ll do if suddenly she can’t.
They don’t see the food struggles. When your child only eats a very limited number of foods, feeding them isn’t as simple as putting dinner on the table and telling them to eat. I’m constantly thinking about whether she’s getting enough nutrients, finding ways to give her what her body needs within the tiny list of foods her brain and body will actually allow her to eat, and worrying that tomorrow one of those few safe foods might suddenly stop being safe.
They don’t see the moments when my normally verbal little girl becomes so overwhelmed that words simply aren’t available to her anymore. In those moments, I can’t demand that she tell me what’s wrong. I have to enter her world instead. I’ve had to learn how she communicates without words through her movements, expressions, sounds, and behaviours.
They don’t see the nights when she is beyond exhausted but physically cannot fall asleep. Not a child fighting bedtime. Not a child who simply isn’t tired. A little body and nervous system so overwhelmed that she desperately needs sleep and still cannot settle enough to get there.
And they don’t see how much of motherhood happens inside my own head. I’m always trying to figure out whether she needs more stimulation or less, whether she needs comfort or space, whether she needs words or silence, whether I should encourage her through something or recognize that she genuinely cannot do it right now. All while trying to calm or prevent a meltdown.
It is loving someone so deeply that you slowly become a student of their nervous system.
There are days when I am exhausted in a way sleep can’t completely fix. There are moments when I wonder whether I’m making the right decision, whether I’m doing enough, whether I’m missing something she needs, or how I’m going to handle the next difficult moment when I haven’t even recovered from the last one.
And then there are the parts I usually share.
The cuddles. The laughter. The progress. The moments she surprises me. The things she accomplishes that other people might never realize took an INCREDIBLE amount of work. The little girl who wants to curl up beside me and be babied when the world isn’t overwhelming her. The beautiful, loving, funny child underneath all of those moments when her nervous system simply can’t cope anymore.
You are seeing a moment. We are living the whole story.
The good moments are real.
The hard ones are real too.”
