The Words Unspoken

From the title I imagine you thought this post was going to be about having a child with nonverbal Autism. Nope! Plot twist.

We had plans today but some crud swept through here preventing us from going. We managed to work up enough good vibes to go to Lowes and the grocery store though. Running errands with Caleb isn’t easy, but we’re not people who take the easy way out anyways.

And I was so excited when it was over! I thought he did an amazing job! We were in Lowes for 35 minutes and Caleb sat in the bottom of the cart and built Lego people and was very quiet and happy as long we we were walking around the store. Which we did while I bombarded him with household vocabulary through the different departments. Then we went to Aldi and he continued building Lego people in the bottom of the cart while we went through the aisles. We passed the bread section, he took my hand and pointed to the wall of carbs, then put my hand directly on what he wanted as we walked by it all slowly. So, to reinforce awesome communication, I opened up the Sweet Hawaiian Rolls and he ate 3 until we checked out and were loaded in the car. No screeches, no attempts to leave the cart, no stomps- it was peaceful and nice and fun.

But when I was recanting to someone later about how proud I was of him, I got the wind taken 0ut of my sails a little. I was posed with the question, “but how successful was it really?”. They proceeded to tell me that Lowes was only successful because I kept the cart moving and Aldi was only successful because I gave him food. And that I wouldn’t have been able to do it by myself because I needed my husband to take Ari and get the needed items and I had to have a cart dedicated to making Caleb my sole responsibility.

I have noticed that things like this being said to me is becoming a trend. Sometimes, people bring things he has trouble with to my attention. Like I don’t make a 15 category lesson plan every single day for him to address his difficulties and delays and don’t know what he needs. Sometimes, people also only compliment him in relation to his Autism. “Thats so great! When would he have done that if he didn’t have Autism?” or “For a kid with Autism, he worked that puzzle really quickly.” There’s this whole big category of things people could say that goes largely unsaid by 90% of people we come into contact with. The words left unspoken are all the things he’s doing well or all the amazing things about him that have nothing to do with Autism. Don’t tell me what he’s struggling with, tell me what you notice he’s rocking out on. Compliment him on his achievements because he achieved them- not because he achieved them despite Autism. Yes, it is true that I have a large social media presence that revolves around the fact he has Autism- but that is not for him. That is for me and for other parents on this journey and to educated and promote acceptance. If you know me- like really know me- then you know I talk about Caleb allll the time and it is rarely in a context that has anything to do with Autism.

If 3 Lego men, a tour of Lowes, and a $1.75 package of Sweet Hawaiian rolls is all it takes for us to run hours worth of errands successfully, SO BE IT. He’s 4. This is obviously not the end goal. But before you get where you want to be, you have to simply start where you are. And this is where we are today, so this is where we’re starting.

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Love, Autism, and Hawaiian Rolls,

Erin

Yes Mamas- there is a Santa Claus.

I have a friend and fellow mama who said to me recently, “If you write a blog about people understanding kids with Autism during the holidays, I will share it. My family will share it, my friends will share it, it will be shared.”

So, now I take requests 🙂

As a grown, responsible, typically functioning adult at Christmas there is a lot you have to think about, take in, and execute in order to participate in the holidays. There’s decorations, lights, different foods, extra time in stores, more navigating through crowds and parking lots, music, the list goes on and on and on. It’s exciting, fun, and maybe a little bit adventurous. Do you know what else it is?

Overwhelming.

Now, imagine all those new smells, new sights, new sounds, new tastes, new additions to routine, breaks in routine, extra people, extra noise, AND you have something about you that makes the following likely true: 1) You don’t have the language to communicate how all of these things make you feel- whether they make you happy or upset you, the words or abstract concepts these things elicit are not readily available to you. 2) You have sensory integration difficulties that make you hypersensitive to noises, lights, smells, etc. and all of those things are coming at you all at one time. 3) Your social skills are a work in progress and you don’t understand waiting your turn in line, why Santa wants to get all up in your business, and that all those toys you see in every store don’t get to hop in the cart and come home with you immediately.

Let me tell you a couple things that might happen when your little body feels all of those big feelings.

  • Meltdowns. For a NUMBER of reasons. Communication barrier, over stimulation of sensory input, difficulty understanding how to respond in negative situations, and a dozen other things. Do you notice what I didn’t put on that list? Meltdowns resulting from lack of or poor execution of parenting skills. Meltdowns because parents don’t discipline their children. Meltdowns because kids are spoiled. Those aren’t on the list because that is likely what you assume is causing meltdowns in children you see in a superficial glance across the mall food court. It’s easier to blame somebody’s mama instead of taking the time to learn about a disorder no one in the world has ever been able to fully understand. Let’s do better than this.
  • Stims. The NEED to stim. Not the preference to….the NEED to. A stim, or self stimulatory behavior, is most typically a repetition of sounds or movements that a child with Autism does to calm them and help them focus. It could be a loud, repetitive sound, it could be hand flapping, it could be rocking, it could be spinning an object- there are no rules. It could also be because they are immensely excited to see Santa or also because they are terrified of seeing Santa. Stims happen in response to feelings and sensory input that is deemed both preferable and non-preferential in kids. So if you are beside a kid in a checkout line flapping their arms against the back of your coat or if you see a kid with the lights from the Christmas decorations half an inch from the corner of their eye- it is a stim. And it is, in 100% of opportunities, to be respected. What if someone told you you couldn’t cry when you’re sad or take deep breaths to calm down? You’re self regulating. The fact that others need to self regulate in a different kind of way shouldn’t concern anyone to the point of annoyance

Now that I have told you about what my child needs, let me tell you what I need.

  • I need your silence a lot more than I need your opinion. I don’t even need your support- that would be demanding. I’d love to have it, but it’s no loss to me if I don’t. But I absolutely don’t need you to say “You should really…..”, “Have you thought about……”, “My brother’s girlfriend’s grandma’s coworker has a kid and….”. Do you know how many breaths it takes to tell someone “You’re doing a good job” versus how many it takes to tell someone “What’s wrong with your kid?”. The exact same amount.
  • I need you to understand why I’m here. I don’t need you to understand my child- I don’t  even fully understand him some days. I need you to understand why in the world- even though I know that it could end with both of us in tears, that there will be sensory overload, that the novel vocabulary is unknown, and that the social norms aren’t understood, why we are here doing this anyways. There’s lots of reasons- you don’t learn skills unless you practice them, socialization, learning in natural settings, blah blah blah. That’s what the clinician in me says. But do you know how I answer that question as a mama, not as a therapist? We are here because I refuse to accept that my child can not have the opportunities to do everything every other child has the opportunity to do. It does not matter if we come and we try and it’s horribly unsuccessful. Because maybe it won’t be. Or maybe it will be until all of a sudden it’s not. But when it works it’s going to be amazing. If you can read the last 5 sentences I wrote without an emotional reaction- without tearing up, losing your breath for a second, nodding your head in agreement, then you. don’t. get it yet. And me and my army of Autism mamas need you to go back and read this and the entire rest of the Internet until you do.

This is my son’s 5th Christmas and I do not have a picture of him with Santa. I want one. Desperately. For him, because I think he would like it and also, for me. Because there are so many things that haven’t gone as I had pictured them, that this one potential picture with Santa means we’re getting there. It doesn’t mean that a stranger in a red suit finds out he wants a Nerf gun. It means that I have a snap shot of progress and there’s hope for me that one day he’ll get to take a child of his own to see Santa.

So, I’m the crazy mama calling malls trying to set something up for him and as a backup plan, I bought my own ever lovin’ Santa suit at Party City this weekend. That’s beside the point though. What I really need you to understand, is that if you see a little one out this holiday season having a hard time and their mama is having a hard time with their hard time- be slow to judge, even slower to speak, and try to have some holiday compassion. Anything you can do to contribute to their success represents so much more than JUST a picture with Santa, JUST sitting through the Nutcracker, or JUST posing in front of a Christmas tree.

Behind every little lap sitting with Santa is a parent who believed they could. And with a little Christmas magic, anything is possible.

Love and Autism,

Erin