When I look at my baby girl, I see a crazy, adorable, busy, growing, affectionate, smart, funny little girl. Other people can see that, too. She is a whirlwind toddler that does very toddler-y things, like throwing things, whining, fighting with her siblings, playing with toys, and sharing her snacks with the dog.
But what you can't see is how much work has gone into teaching her body and brain to do many things that other toddlers "just know" how to do. Like how to "play" with toys. Or tolerate clothes. Or sleep with a blanket.
What doesn't "show" is how overwhelmed she gets by being in new places or around a lot of people all talking and laughing. She seems fine. But all of those people don't come home with us.
They don't have to physically wrestle her into her car seat as she screams because she wants to run in circles longer. They don't see the bite marks on her hand from her chewing on it. And they don't hear her cry when we pull into the driveway because she finally felt soothed in the car and doesn't want it to stop.
They don't get slapped or pinched or bit when they again wrestle her out of the car seat and into the house, and be deafened by her shrieks when someone else is holding the cat by the time she is finally willing to stand up.
Very few people are aware of her "prescription" activities. Especially if they are activities toddlers enjoy normally anyway. But her evening bath is an essential component to her being able to sleep, and her swing is comparable to an anti-anxiety pill. Others don't see the stretches, and joint compression, and reflex protocols we do often, and are supposed to do everyday, we're still trying to get there.
When people do see her, they have no idea that very often she is doing a sensory diet activity. We make almost every activity try to fill some need and maintain her delicate balance. Like me hanging her and swinging her upside down. Or having her carry a bag or backpack that is heavy, but not too heavy for her. Or toting around her sensory snake to help her stay calm and quiet. Or walking her, and walking and walking and walking and walking...
Not many hear how many times a day we tell her to say things so she can keep practicing her speech. Or how every game we play, and back and forth with toys is stuffed with words, all the time encouraging her to continue to speak spontaneously and not just echo our words. They don't see how quickly a couple of bad days reduces her ability to formulate speech and she becomes heavily dependent on signing again to express herself or get her needs met. They don't worry about how fragile her gift of speech is and that at anytime her words could simply slip away again as they did before.
Because she looks so much like other toddlers, and her hair is so blond with little spring curls at the bottom, people like to show their affection by petting her head or smoothing her hair. It's a sweet gesture. But... They don't feel her body tense, or see her eyes start darting. They might see her staring them down, but they aren't hearing her message..."don't touch me"...
They have no idea that in public and under emotional strain it's so much harder for her to find her words and that her silence isn't actually her consenting. But that she internalizes these anxieties and it comes out later through behavior, stimming, and unwillingness to comply even with activities she enjoys.
Most of my regular readers already know, but for those that are new, she, and her older brother, have both been diagnosed with an Autism Spectrum Disorder, and are significantly impacted by their sensory challenges.
Just like I didn't know before I understood my own children's diagnosis', many people often have no idea of the crushing power of their words when, after I find the courage to mention her diagnosis, though well meaning, they tend to say "she doesn't look like it" or even more heartbreaking, "are you sure?"
Autism and Sensory Processing Disorder are often called invisible disabilities. But in truth, it's only invisible to those who aren't looking, and to those unwilling to see. Because once you know what it "looks" like it's much easier to see. In fact sometimes we parents see it so much that we have to remind ourselves to take off our "autism/SPD glasses" and just soak up our kiddos. Because those of us living with it see it so clearly every day.
We not only see it, but hear it, feel it, get worn down by it, get beat up by it, but also find ourselves amazed and inspired by it. We live it, plan our hours, days, weeks, months, and years around it.
Here's a few examples of what I mean:
- You might see a toddler just playing around.
- I see her avoiding putting pants on because even soft fabrics bother her when she is feeling tired or oversensitive, and also trying to get deep pressure by pulling her legs tight to her chest over and over. So I make a game of it to help fill her need so I can help her feel like a toddler just playing around.
- You might see a cute little girl in a mismatched outfit having fun making the balls spiral down and assume I'm letting her pick her own clothes and that this is a regular, fun outing for us.
- I see my baby in the only clothes she would tolerate that day after several outfit attempts, stimming on the balls spiraling and me carefully watching for the right time to redirect her elsewhere because she is becoming obsessed and possessive and not interacting with anyone, much less the other kids we came with, BUT, considering the last time we tried an outing like this, seven months before, led to me avoiding taking all three of my kids anywhere by myself for months, this time is SO much fun and she is doing great!
- You might see a cute little girl nicely playing with puzzles and adore her ponytail.
- Absolutely! She is so cute! But I also see what a huge deal it is for her to be regulated enough to tolerate a ponytail and that it had been nearly a month since she last tolerated anything in her hair. I also am soooo proud of her for not simply insisting on dumping the pieces to every puzzle and then crying until I put them back together so that she can dump them again over and over. Instead she stacked them over and over. BUT! When her friend came in the room and started to do one, Kit not only allowed it, but helped, by handing her pieces! And then went on to settle into working several of them herself, thus transitioning herself from a stim into a joint and interactive activity with both her friend and me, AND using the toy appropriately!
- You might see a cute little pink bundle, and might worry that she's cold.
- I love this picture! She is so cute and it makes her look so tiny. But when I see her this way it also makes me sad. I see her so oversensitive that she absolutely would not tolerate pants or socks or long sleeves. And it is also keeping her from allowing a blanket to cover her. But she is desperately trying to self regulate, so she curls up into the tightest ball she can to create as much deep pressure input as possible.
- And, yes, I worry that she might be cold. I will try countless times to cover her, only to have her wake angry, shoving and kicking the weighted blanket, that took us months to get her used to sleeping under, away. If I touch her skin to feel her temperature, there is a 75% chance that it will wake her, so I make sure the heater is on and have pants ready to put on the second I feel she will let me. Obviously, I'm not going to get much sleep waking up constantly to check on her and be awakened each time she pushes off the blanket again.
My point is that like an iceberg, there is far more that can't be seen than can to the casual observer. That's not necessarily a bad thing. It's just a fact.
When we go out and people see a beautiful, slightly shy, but energetic toddler, they are seeing my daughter. They may smile to see her chase or be chased by a pack of kids with a big smile on her face! I smile too!
If they don't "see" Autism and SPD when they look at her, it's a sign to me that she's comfortable and well regulated, and that all the work we are doing is helping. Not at all out of embarrassment, or because I want her to "be normal". But rather, because it's helping her feel the world a little less intensely, and to focus on just being a toddler, and to revel in her childishness instead of being driven by her body and mind in overload. Because, she deserves to get to just be a kid.
Many people want to be supportive, but are taken off guard when presented with the word Autism, and they are just not sure what to say. So, what do we want to hear when we reveal our kids' diagnosis or challenges? It's totally fine to say any of the following, obviously depending on the situation:
"wow, I didn't know that"
"oh! ok, thanks for telling me"
"I imagine that has some unique challenges"
"I don't know much about that"
...and depending on time and circumstances sometimes the following are lifesavers:
"I can see how much you love your kids"
"he/she/they are beautiful/amazing/so cute"
"your doing a great job"
"is there anything I can do to help?"
...and we are happy to answer genuine questions, so do feel free to ask.
Most of the people I have told have responded with love and support, but I know of so many other parents who have been terribly mistreated, and it breaks my heart. Parents shouldn't have to feel like they have to hide it or, conversely, prove it to others, perfect strangers or otherwise. Especially since there are so many individuals out there who experience far greater impairment, difficulties, and anxiety related to their own or their children's conditions. In so many ways I have it easy, so I feel somewhat responsible to contribute to a kinder view of these conditions.
And to clarify that if our kids are having more good days than bad, if they are hard to distinguish from their peers, if they are looking you in the eye, or acting "normal", it doesn't mean they have been "cured" or "misdiagnosed" or "outgrown" their neurology. And if they are not, and are having a bad day/moment, that it does not mean that they are "spoiled" or "stupid", or "undisciplined".
It means that every individual on this spectrum has different needs, strengths and weaknesses. It means that they are learning to work with their brain instead of against it. And that to get there took an enormous amount of work, time, energy, sacrifice, often money as well, and did I mention work? Work, work, work!
A work that is ongoing, but mostly...unseen.