3 years ago

What we’ve learned from Autism this summer

Here I am, reflecting on how our summer went this year, considering being annoying and cheesy and spending a stupid amount of time putting together a 2 minute video for you to completely ignore –but first, something a little different.  Inspired by Krystin’s post, and realizing  how greatly we’ve been impacted, I couldn’t create a cutesy, perfect video without feeling a little disingenuous: I’m writing about how Autism has changed our family dynamic since we first suspected it in Emmett.   If you’re new to the bloggerella and care to catch up, my initial reactions to receiving Emmett’s diagnosis are blogged here and here. (Hi! Welcome!).

 

Sharing the not-so-pretty

I assume any parent of a child with special needs isn’t going to be live-Instagramming the ugly, scary, dangerous side of their challenges as a parent– just as anyone suffering from any challenges or hardships likely won’t stop and take a selfie during those times. Maybe befores or afters, but not the durings.

What I post on Instagram is Emmett’s smile, or his amazing memory retention.  I share his love of colors, numbers, and music. These things are the sweetness which pulls me through difficult days full of high-pitched shrieking and kicking tantrums at every turn of my head. We’ve created an environment in which most days are filled with Emmett’s sweetness and mild temper.

Emmett’s latest word no one taught him. (We’re certain it’s the Universal in Universal Studios)

I’m painting a picture of the serious side of autism, but please know it’s not sympathy seeking, or to claim “I’ve got it tough” –or worse yet, to claim “I’ve got it harder than you.”  Honestly, this stuff is kitten fluff.
It’s just different. I take comfort and have faith in 1 Cor 10:13 and John 16:33.

I know now more than ever that each family has their own struggles and difficulties, and that they have a right to be as private about it as they want, and they also have a right to complain about it –without feeling like “they don’t appreciate what they have.”  Of course we appreciate what we have! But it’s human to feel sour about it sometimes. The path to sanctity, folks, lies in what we do with the sour. Lemonade and all that.

Following other bloggers with children of special needs has been eye-opening for me, and following their struggles, their joys, and their silliness, a source of respite.  I’m thinking of Kelly, Mary, Krystin and even Bonnie: Even though I lurk, you ladies, I like you. Connecting with non-blogging moms who are new to special needs and veteran alike has been fresh air as well.

 

The comfort in having a diagnosis.

Having medical professionals, dozens of them, study Emmett has given both my husband and I peace that we are not weak, insecure parents.  Because feeling weak and maybe indulgent is one of the first things that jumped to my mind when Emmett would writhe on the floor over a misplaced block.  I could feel it from onlookers. That parent has no control over her child.  

Short of carrying around a large poster which reads “HAS AUTISM” and holding it over Emmett’s head, no one at the grocery store, no one sitting next to us during Mass, no one anywhere has any idea that the small, normal-looking boy wailing about an object which won’t sit exactly horizontal is affected at every moment by autism.  No one who sees me move quickly to give him an object he wants in order to avoid public meltdowns knows how ugly the meltdown can be, and that it can drag on, and on, once it’s begun.

Having a diagnosis gives me inner peace when our outings are not peaceful. Learning about Autism has helped me to keep a few steps ahead of Emmett (even though sometimes, not.). Even knowing that things will turn ugly real quick, knowing there’s a name to it, knowing there’s a reason for it, has changed how I feel about myself as a parent, how I feel when out in public, and how I feel and think when I see a “bratty looking child” throwing a fit.

 

He wanders.

At first, the struggle with facing the reality that is Autism encircled my pride.  I’ve always wanted to be that family with parents who lead the way, as their little ducks march behind, single-file, without even thinking of deviating from the parental path.

But even before his diagnosis, we noticed Emmett is a flight risk.  It took three, great, heart-stopping incidents which followed me turning around, and seeing absolutely no trace of our then 2 year old.

Property of C. Svellinger

I realized we would not be that sweetly marching duck family.  Looking for and not finding our little boy quickly shook me of that pride, and replaced it with an ever-present anxiety which presses on me when we are not in the confines of our own home. When I finally stumbled upon an Autism Speaks article comfirming my fears, that wandering can be a common trademark of Autism, coping with that anxiety has become another function for me as a mother.

Even surrounded by extended family –actually– especially when surrounded by family, there is danger. Where conversations are full of laughter and love, attentions relax and we assume all the children are playing together  –suddenly Emmett is not there:

Emmett has found his way into the front yard, enamored with reading the license plate numbers of each and every car he can find, and he is alone.
And there is a driveway just begging to be run along. And the driveway is met by a busy road.  More cars. More cars with license plates to read –only these cars are moving. They are moving fast. And 37″ tall Emmett has no concept of danger, only that there are letters, and he thinks they are fascinating.

A house full of adult family members who love each other dearly, and a 3 year old boy wanders away, unnoticed by anyone.

And next, he darts off, letters forgotten, his face turned skyward, with no sense of danger or where he’s going, but only that the trees and the rooftops are “BEWWWWWWTIFUL!!!” and he might run on like that for a long time, if Craig or I had continued to be so enveloped in a conversation about politics, or religion, or a television show, that we had not looked up to check for our brown-eyed, wavy-haired boy.

The first time Emmett wandered away from me, we were visiting friends. There were 8 children playing outside and three adults chatting and observing the toddlers play.

The moment I called for Emmett and he was not there -the moment I ran behind the large barn next to us and saw no trace of him- I jolted in sudden awareness of the acres and acres of land, woods, fields, bodies of water, and busy road -not barred by the safety of a fence- which surrounded us.

The earth left me and I realized I was standing as a mere speck in the universe.
Which way could he have gone?
Which way should I look?
And my eyes, I suddenly hated my sluggish eyes which couldn’t scan the tree line fast enough.

That feeling –like someone has plunged a serrated knife with a hook at its end, through your stomach, and jerked out your gut, and you look down trying to understand what you’re seeing, knowing you don’t have the time to comprehend it— is the definition of Hell.

I dread going outside. But we go.

Property of C. Svellinger

Trailing: The warning sign of wandering.

If there is a fence, Craig and I must still be on alert.  After all, who’s ever noticed herself worrying about making sure a gate swings shut? I mean, we’re outside, people are going in and out all day. Right?

 Give Emmett a cracked door or gate, in a crowd of people who overwhelm him with their riotous laughter and loud talking, and he takes the escape route.

Emmett often does something I refer to as trailing: The prelude to wandering. He explores a space and creates his own trail, which for a time, he does not deviate from, but merely extends it, adding certain stops (touch that tree, walk over the rock, touch that corner), always circling around to the beginning. I’m sure there’s probably a scientific/medical term for this, but I don’t know it.

This seems like it would be okay, like maybe you could let him do his thing while you chat about nail polish, and it is, until he decides he knows that path well enough to make a new one. And that’s when part of his new path may be taken over by his amazement with the clouds –and he’s running blindly towards God knows where.

Property of C. Svellinger

Empathy of the Introvert.

Thanks be to God, this is something I understand through and through.  I’m great with socializing, but I’m not great with not having ample time to “turn off” and have quiet- like, no one talk to me, literally.  I need it like I need sleep.  In fact, I’ve often wondered that I need it more than I need sleep.  Considering Emmett stopped napping at two and a half, and sometimes wakes up for long stretches of the night, I think he does too.

Only he does not know how to verbally tell us this.  He does not know how to say, “I want to go home.” or “I’m tired” or “it’s too loud here.”  Emmett communicates this to us by a signature high-pitched shriek.  A shriek which, after watching a few autism videos, I wonder if it’s kind of a telltale cry for many non-verbal children of autism.

We go through this most Sundays during Mass.  If I have to take Emmett to the grocery store with me, I never try to buy my list.  I zip through the store in a mad dash, grabbing the essentials, knowing Emmett’s a time bomb and he’s ticking; and the only way to turn him off is the certainty that we are going home.

Listening to my momma gut.

As soon as someone tells us to lighten up about it or take a break, as soon as I think Emmett’s gotten better about listening and staying close, he’s gone. He is our child, and when relaxing about a very dangerous potential becomes the margin between his life and death, I will never relax.

This also includes saying no to invitations or well-intentioned suggestions. Being flexible and deciding that even though we RSVP’d to attend, sometimes backing out will be best for everyone that day.  Having the courage to speak up, knowing it might cause some chafing of pride among dear loved ones, even though it’s never, ever meant to offend, has come with the territory.

Using what works.

Property of C. Svellinger

This summer, we’ve learned to use what works for Emmett. After much encouragement from Craig, it took all summer for me to muster the courage to take all three boys to the pool on a week day without his help.

We went, and I threw out any and all expectation I might even hope to have about a trip to the pool with three children. As soon as I detected a sensory overload from Emmett (it begins with trailing; seeking a space to escape for quiet), we left. We’ve been able to go multiple times, and knowing how to handle everyone makes it a new normal.

Public bathrooms are a source of anxiety for Emmett, but when we can’t avoid them, I’ve discovered playing Emmett’s favorite music on my iPhone keeps him amazingly calm.  I think we will look into finding some huge, ear covering headphones to have on hand during these events.

I keep Emmett’s Word Book I created on me at all times, and give it to him when I sense an oncoming tantrum, knowing I need to make him last a little longer.

Often, Emmett becomes upset while riding in the car if we deviate from the road or path he expects us to drive.  Following the advice from Emmett’s early intervention specialist (who we miss!), I take pictures of our typical destinations and keep them on my phone.  Before we leave, I show him a picture of, say, Target.  I encourage Lexington to participate by talking about where we are going, the colors we will see, and what we will do. I’ll flash the image while at a stop light, to remind Emmett, and ask him, “Do you see Target? Target, where are you?”  It seems to help significantly.  Most times.

Property of C. Svellinger

 

How autism has affected his siblings.

Collin has learned, while watching me interact with Emmett, that he can attain things by screaming loudly and falling to the floor, and it’s proving difficult un-teaching this.

Craig and I have watched Lexington act out when he feels he’s been treated unfairly compared to how we treat Emmett in the same situation.  Though we expect certain behavior from Emmett and push him to grow, we know there’s a line and sometimes it’s different than his brothers.

I praise God that Lexington is finally old enough for us to explain Autism to him.  I felt a huge shift from Lexington the week after Craig and I explained that Emmett doesn’t know how to use his words as well as Lexington does.  I’d planned to describe Autism as an illness, to make it easier for Lexington to grasp, but he interrupted me, “so that’s Emmett’s superpower?”

I’ve noticed Emmett’s brothers stepping up to help him. They help him when he’s frustrated with a toy. They help him get his shoes on. They help by buckling him into the car seat, by sharing food, by paying greater attention to him.

Collin watches Lexington help Emmett, and he follows.  They help me keep tabs on Emmett when we are out. “Mom, where’s Emmett?” They remind me.

Emmett is blessed with brothers, who I foresee, will always defend, protect, and help him.  I couldn’t feel a greater joy and gratitude in this.

Overall.

I compare this summer to last, and we’ve changed for the better in so many ways; mostly in how we’ve learned to function as a close-knit family, relying on even the littlest one to contribute. I’ve become pretty resilient in ignoring cultural pressure to go and do and see everything.  We can’t be that family running their children hither and thither with multiple activities and sports, because Emmett struggles with that, and happily, I, the introvert, do too.

We move slow, we don’t stay places for long, we cut out extra stuff, and home is our happy place.   This is how we have to be for now- or forever, who knows.   I know that what’s normal for us is not going to be normal for most families.  In a way, I feel relief over that.  But I’m fairly certain the general consensus of moms the motherland over, are the praises I sing of the drivethru.

Property of C. Svellinger

#, #

11 comments

  1. Carolyn, I am so moved by your words. The way you’re learning to help him, help your family, and do the best for those boys is beautiful. The way the other boys are helping Emmet and learning to love him with Autism, it’s tear-jerking. Thank you for sharing what it is like for your family, because without people like you and Krystin sharing this, the rest of us just can’t and don’t know. Now I can be more understanding, and hopefully when I have an IRL friend near me with similar struggles, I can be a better friend to their family. Love to you.

    Reply
  2. This is so great and so, so helpful to families who love someone on the spectrum. Thanks for the compassionate, realistic and nitty gritty glimpse into your day to day.

    Reply
  3. I stumbled on your blog a few weeks ago. You’ve definitely changed my attitude when it comes to seeing “unruly” kids in public. Having an (almost) two year old has humbled me in a lot of ways but this pushes me to new areas of more empathy and less judging. This post is beautiful and I’m sure will help some mom who is struggling with the same thing. I’m sure you’ve done your research into resources for E, but I wanted to mention music therapy since you said music helps him. My sister is a music therapists and works with special needs (physical and mental) children. Music therapy could be a great resource for you.
    God bless and you’ll be in my prayers.

    Reply
  4. This is beautiful. I wish more people read posts like this. I was watching the news the other day and a little boy had gotten out of the house and they were interviewing neighbors. They were all so shocked and horrified that the little 2 year old had gotten out. “Why aren’t the parents watching him?” and “What kind of parent lets their kid out of their sight like that” I could only think about how easy it is for a kid to escape and run down the street. How it only takes a few seconds.

    Reply
      1. Love your posts, really well written. My heart goes out to you – and I wish I’d documented our journey. So many similar concerns – we installed an alarm system in our house with a chime when doors open. Sounds extreme but sometimes you just really need to take a shower and not worry! My daughter is 12 now and she has come a long way, we still have transition issues, routines that get broken but her meltdowns now seem to be more from stress or basics like sleep and hunger. Also big earphones/ noise canceling and as she got older she can self manage a lot more with music. Loud areas- lots of people are very hard, hugs to you and yours, D

        Reply

Add yours

*

*