The Balancing Act of this {Autism} Life

It’s 9 a.m. and my toddlers are eating popsicles. 

They are content (even quiet?) in their car seats behind me as we drive to ABA therapy.  We are going on year three of “potty training” (I could call it a lot of other things) with my son Wilson, who is almost five years old and on the autism spectrum.  He really pulled one over on me this morning with the new potty sticker chart by managing to sit and pee in the toilet four times more often than he would have on a typical morning, scoring a popsicle for himself as well as his little sister.

Oh well, it’s all about balance, right?

As parents, we all strive for a sense of balance in our children’s lives. There are the usual suspects: screen time, treats, sleep.  If you are a parent of a child on the spectrum, you know there tends to be a few more items to add to the daily juggle.

You pack his food for the day (the same food you packed the day before and the one before that).  You keep his snacks on hand, knowing full-well you can’t just pop into a restaurant or convenience store and find something he will consume. 

You try to get him to taste new things but you also want him to eat.  He has inherited your stubbornness and those hunger strikes are brutal for everyone. He knows the difference between chicken nuggets and tenders and how dare you serve one instead of the other?  If you buy another brand, size or shape of his precious food he will make certain you regret it.

You sneak eight supplements in while keeping all the gluten and dairy out.

You plan and adhere to a routine (because that’s where he thrives) but also create space for him to enjoy some toddler spontaneity. Allow him freedom but not so much that that he’ll wander off. Let him feed his curiosity but keep this fragile and fearless little human safe.

You let him stim and enjoy scripting off in his own little world, but not for too long, or he won’t let you join him there.

You prepare for the battles you know are coming, like haircuts, dental exams or finishing his food containing aforementioned supplements. You keep a reserve of patience for the obstacles you don’t foresee, like an altercation over his open urine sample (he wanted to pour it into the potty like a “big boy” and I needed to ship it off to a lab in Texas.) Or that time he flushed his soiled underwear down the toilet…

You enjoy the quiet moments and you fear them. If it’s too quiet, then someone is up to something, somewhere.

You teach him “I want” and “no” when you would rather he was saying “please” and “no, thank you”.  When he requests something appropriately, you usually oblige because it took so long to get there. In the back of your mind you worry that you tend to give him anything he wants to avoid a meltdown.

You let him struggle. This, this one is the toughest. To wait.  While he fumbles into his clothes or attempts to put his shoes on the wrong feet, you take pause instead of jumping in to do it for him.  You hold your breath when people ask him questions and he struggles to think of a response, trying to give him a chance before answering for him.  

You start to plan for the future, but it’s overwhelming. The unknown is terrifying, so you try to live in the present.

You are his advocate, not just for more, but also for knowing when he’s had enough poking, prodding, testing or hard work. The real balance is knowing you would do or try anything to help your child while having the awareness that you cannot do it all at once.

I know many of us never feel like we have found this sense of balance, but we will never stop searching for it.

*Originally posted in July, 2018 but still resonates today. I am happy to report that we survived potty-training and I get to hear “Thanks, Mom!” so often it melts my heart.*

growth, change, & autism

One clear memory from Wilson’s autism diagnosis evaluation has stuck with me.

We sat in a stark room with no windows. The psychiatrist had brought out one activity at a time, then locked them up in a cupboard once they were done.  I vaguely remember a baby, and a pretend birthday cake, and so many blank stares and unanswered questions.  

I sat quietly in the corner as they had requested. No jumping in to answer for him or prompt and encourage him.  The psychiatrist asked me to call his name from across the empty room. 

“Wilson.  Wilson. Wilson!” 

Nothing. He didn’t even turn his head in my general direction.

He wasn’t distracted by toys, which was the reason I had convinced myself he didn’t usually respond to my calls for his attention.  He just casually looked at the doctor, then around the bland room.

It truly seemed like he could not hear me. But we had already been to all those specialists for all of that testing by the time we landed in this office for this autism spectrum disorder evaluation. He could hear perfectly fine.

The psychiatrist asked me to do whatever it is that I do to get his attention at home. So, I said, “Hey buddy!” and eventually walked over and touched his shoulder.

I told her we wondered if he thought his name was “Buddy” since we called him that so often.  Maybe that was why he didn’t respond to his name yet.

Hope and denial and acceptance ran murky lines during those first few years.

Fast forward five years, and I must tell you this boy doesn’t miss an opportunity to say “Hi, Mommy!” or run to the door to say “Hi, Daddy!” when he hears his dad’s truck coming up the driveway.

Change happens. Growth will happen. It may look different for each child, but we will all see it, and we will all feel it.  We will all go through the phases we cannot wait to get out of and the moments we want to freeze in time.

So proud of how hard this boy has worked for all his growth.

scripting & communication

“Wow, there sure are a lot of letters! Each makes a special sound.” ✨

This is scripting (reciting learned words and phrases from movies, books, shows, etc) from a favorite Leap Frog Letter Factory show. Scripting was one of Wilson’s first vehicles for verbal communication and he often still uses learned phrases to communicate today.

So much language coming out of this kid lately! ❤️

The knocking on the wall is a fairly new compulsion. Luckily the dog doesn’t mind, but mom and dad keep thinking someone is at the door. 😆

click on image below to view video.

Letters!

For Wilson’s Tribe

While motherhood has certainly been my greatest adventure, the vulnerability in becoming a mom, and the mother of an autistic child, has been a substantial challenge for me. I found myself, for the first time in a long time, in need of help.  A lot of it. This has never been something I’ll easily admit, ask for, or receive.

Thankfully, I am surrounded by the most patient, kind, and generous humans who constantly offer their support and lift this family up.

Our friends and family and friends who are family, you open your homes to our curious boy to redecorate, climb on furniture, your laps, and shoulders, and oblige him in his relentless requests to be chased in circles. You continually say “hi” and attempt to engage with our little man, even when you know you will likely not hear a response. Someday, he will hear you, and see you, and you will get to see his sweet face light up like never before. You love our children like your own and you will never know what that truly means to us. 

His teachers, behavior interventionists, doctors, therapists, and caregivers, you are patient, loving and recognize the little stuff can be very big stuff for him.  You remain so calm through the storms. You help us set goals and teach our little man how to crush them.

His little buddies, you have the most innocent, loving hearts.  You don’t see “different”, you just see him. You may be few, but you are such an enormous light in his life.

The sisterhood of autism moms and special needs parents, the connection and community I have found in you is invaluable.  I know my words don’t resonate with everyone, but they might with you.  Hearing your stories of struggle and achievements that come in every shape and size has been a constant reminder to always come back to hope.

All our friends, family, and friends of the family (some of whom I haven’t seen in years), who comment, message, and share our story, you encourage, support, and lift us. When you share our story, you are helping us achieve inclusion and acceptance.

Charlie, aka Sis, you know best how to drive your brother completely bonkers, the exact buttons to push, but you also unconditionally love, include, and protect him. You aren’t afraid to get right up in his face, so he sees you, so he hears you. He feels how much you love him; I promise you.

Wilson’s Daddy, you are strong when I am weak. You always support new methods, diets, and my harebrained ideas but aren’t afraid to question when something doesn’t feel right.  You keep him happy and safe, which isn’t easy but is our greatest purpose.  You know him and you love him so well. You stand with me, to advocate for him, to fight for understanding, and you remain there through our proudest moments and in our weakest.

My sweet boy. You adore the simple things. You smell, touch, taste and intensely examine. You’ve made me slow down and pay attention, whether I wanted to or not, you need me to.  You’ve helped me find patience, and still, I pray for more every single night. You have forced me into a vulnerability like I have never known and shown me all the amazingness that follows such a leap. 

You’ve shown us how hard your world can be. Through frustration, pain, confusion, and sleep deprivation, you are still so happy in your soul. You’ve shown me this is not only possible, but also just all a part of this wildly imperfect, beautiful ride.

I am so thankful for you.

your words matter.

I don’t think there is a mom out there that hasn’t been kicked in the ass by motherhood a time or two.

Years ago, when Wilson was a nonverbal toddler and Charlie an infant, I attempted to take them both to Target.  This was pre-autism diagnosis, and I really struggled to understand and communicate with this boy of mine.

He started getting worked up as I loaded them into the double stroller.  As we passed through the automatic doors, he quickly escalated to intense screaming.  Everyone stared. I had no idea why he was so upset. His shrieks were so loud, he couldn’t understand a word I was trying to say (or see the bribes I was sending his way).  I turned around, wheeled them outside and bent down to try and reason with my frantic child at his level.

That is when his little ninja foot connected perfectly with my jaw. My toddler had just kicked me in the face.

I held back tears as I headed back to the car. Wilson still screaming, the baby was clueless, and we had no groceries to show for the courageous outing.

A man in the parking lot saw me and said, “You’re doing a great job. Being a mom is the hardest… I’ve got two little ones at home.”

I burst into tears.

What he said was nice, but do you know what I heard?

I heard that motherhood is hard, and it wasn’t just me doing it wrong. I heard that I am not weak, unqualified, or unfit for this mom-life thing, which is exactly the narrative I had been telling myself all too often.  This job is hard, and beautiful, and messy, and to acknowledge that is normal and to struggle is okay.

I felt seen at one of my weakest moments and encouraged by a stranger.

That man probably has no clue what he did for me that day. How he encouraged a struggling mom and that she still thinks about those words, years later.

Think about how easily you could do that for someone else… your words matter.

Just to be crystal clear, I know there is always a time and a place and commenting on a given situation doesn’t always feel right.  Just remember you are capable of being a bright spot in someone’s tough day.

Also, remember that your best is MORE than enough.

remember my boy

Explaining autism is hard.  Understanding the complexities inside of my sweet boy can feel like trying to catch and examine the wind.

If there is one piece of autism awareness I can leave you with this month, this would be it:

The next time you are stuck at the grocery store, irritated with the man at the front of the growing line because he keeps chatting with the clerk, think of my boy.

The man might be verbally ruminating about new soda flavors he saw on tv or explaining his frustration that the store is out of the only bread he eats. How it is very important because he eats this bread for every meal in his day.

He may also bring up the triangle-shaped crackers he saw on aisle seven. For him, this is so silly because crackers really should be square.

He’ll fumble with his money.  Something that seems so simple for many but for him, this has taken intentional practice.  He carefully counts and counts again.

He’ll often adjust his big, bulky headphones. At first, you probably thought he was listening to music, but they are there to block out the unwanted sounds, squeaky grocery carts, fluorescent lighting, beeping registers, that kind of distracting thing.

When he moans, chats to himself, and waves his arms, he is growing more uncomfortable and overwhelmed in this busy place. Moving his body and voice this way helps him stay calm.

Remember by boy.

Because one day, this will be him.  While I don’t know exactly how he will behave, I do know he will be processing a lot just to be there.

I know he will have worked hard for years to be in that line alone, and I will be so proud of him for this.

I’ve seen him work harder than most for his entire life just to participate in this world. This work began long before his autism diagnosis at three years old or before any of the accompanying anxiety, sensory-processing disorder, and obsessive-compulsive behaviors were ever put down on paper and filed away somewhere.

So please, remember this blue-eyed boy who loves pirates, music, and square crackers and whose hard work began when he was a toddler.  The 1-in-54 whose brains work differently like his, they will grow up, and their hard work will remain, too.

Remember that you do not have to see the struggle for it to be there.

As his mother, I need you to be kind and patient with him. I beg that of you.

He works so hard.

autism: the beginning

“STOP FOLLOWING US, BABY! Why doesn’t he talk? He’s a BIG BABY! AHHH!!! Run!!” 

I watched as the two older boys screamed these words into my son’s face at the otherwise-empty playground.  They couldn’t understand why a kid my son’s size wouldn’t talk or pick up the clue that they didn’t want him around, even after it was screamed into his face.

My sweet boy had recently been diagnosed with autism. He had limited verbal skills and a spirit so big and bright. He laughed as the words were screamed in his face and continued to chase the boys who wanted nothing to do with him.

The boys’ mothers were deep in conversation at a table across the park. Once or twice, they called over something along the lines of “are you being nice?” and got right back to their conversation.

I can still feel the tightness in my throat as I fought with all my being to not cry. The tears poured down from behind my sunglasses. I stood there alone, praying for the mothers to notice my special boy and intervene in some way. Occasionally, I choked up a few words to try and redirect my little man to another part of the playground.

I had no words that day.  I was fragile, still processing this new world of autism and what life ahead was going to look like for my boy. And that afternoon just broke me.

This was the beginning.

Luckily, my son did not feel the pain of exclusion that day.  I know it will not be that way forever.  He understands so much more than he can say, and he feels so deeply.

Now, I would know what to say, and I wouldn’t wait on strangers to say the right thing for me. But it sure would have helped this mother’s fragile heart if those boys had learned a little about differences, kindness, and inclusion.

April is World Autism Awareness Month.  When we advocate for autism awareness, really, what we want is kindness + inclusion. That is what really matters.

Learning about and celebrating our differences and those of others can change everything.

a little advocate

This is Charlie.

When her big brother, who is seven years old and autistic, lost his first tooth, she asked us to write a letter to the tooth fairy because she knew her brother would love a toy more than money.  She made sure to check his pillow the next morning and show him what had arrived.

She has taken on the role of a special sister the most beautiful way. I don’t know how a five-year-old can accept such big things? Like how sometimes her wants and needs just must come second. Or third. 

She doesn’t know about all the things we’ve had to miss out on because we were not able to take her brother, so we all stayed home.  But my heart says that she wouldn’t mind. She always wants him with her anyway.

This little light came into our lives when we needed her most. When her big brother needed her, too.

She quickly took on the role of looking out for her brother, telling people when he can’t do things or when sounds are hurting his ears. Or when he just needs a break to sing himself a song.

As you can imagine, being relied on through toddlerhood is a lot. It continues to be a lot, but she navigates everything that comes her way with more grace and patience than I have most days.

Her brother doesn’t like it when she eats cheerios because of the smell. He cannot tolerate some of her favorite shows or toys because of the sound.

She has learned to bring him his headphones when he is overwhelmed, and rush through her morning cup of cereal. These are things I wish she didn’t have to do.

The majority of her first few years were spent in the car, shuffling her brother around to different specialists on his long journey to an autism diagnosis.

Then it was her turn for the doctors, specialists, and more waiting rooms.  Her severe allergic reactions, ambulance rides, Epinephrin pens, glasses, patching, asthma… she continues to adapt. Nothing slows her down.

She is happy, independent, curious, and I love watching her learn and grow more each day.  She asks questions (so many questions!), watches, listens, and takes it all in.

She encourages her brother through difficult food therapy and haircutting programs. “It’s okay, Wilson.” She whispers in the sweetest voice on earth. She takes his hand to show him when he doesn’t seem to listen.

She tells others matter-of-factly that her brother has autism.  She looks up to him, admires him, and is so proud of him.

When she empties her piggy bank to get a toy at the store, she asks to pick one for him, too. How is so much kindness and love packed into that sweet little body?

She is not an autism expert, none of us are. She is learning to be a thoughtful, kind human who knows differences are good, beautiful, and something to be proud of.

We’re so proud of her and the amazing person she is becoming.

Always Presume Competence

-Nonspeaking does not mean a person cannot communicate, understand you, or that they don’t have feelings.

-Please drop labels like high/low functioning. Would you want to be talked about that way? Instead, you can say, “Tell me more about your child.”

– If a person is not making eye contact, or moving their body in a unique way, do not assume that they are not listening. In fact, that might be HOW they are able to focus on what you are saying. 

This was the first time I saw Wilson write his name. At the time, I didn’t know he could do it. In fact, I didn’t think he could do it.

I can’t believe how many times I have underestimated this boy.

If you think he looks proud, you should have seen me.

autism & awareness

Oh April, Autism Awareness Month.

I have mixed feelings about you.

You see, I am never unaware of autism.

When I answer the same questions 1,980,674 a day from my little boy with autism, it’s impossible to be unaware.

Or when I help him go over his schedule 630,238 times a day. My husband looks at me and says, “It’s so bad right now.” He means the OCD behaviors. That is just a bonus thing to be aware of with an autism diagnosis. Anxiety is right up there, too.

Yes, then I am very aware.

My boy with autism. Or my autistic boy. This is a very important thing.

One is a person first, after all, he is a boy who just happens to have autism. 

The other is an all-encompassing identity worn with pride. 

I wish we didn’t have to choose. Can’t it be both? I want both for him.

There is no right answer, but people will tell you otherwise each way you choose.

Maybe someday my boy will tell me his preference.

Just like someday he will answer his dad when he asks him what he did at school that day.

Every day he is met with silence and a smile. Some day.

A lot of autistic adults really want to skip the whole awareness thing and have everyone move right on into acceptance. That sounds ideal to me, but I really don’t see how one can happen without the other.

So, we talk about autism to spread awareness.

It does get a little exhausting, I will be honest.

The repetition, the hope, the advocacy on eggshells.

But I get excited, thinking about more people joining in on this awareness thing. 

I can start to see a world where communication without words is commonplace.

And maybe things like atypical eye contact wouldn’t be a thing, and maybe parents like us wouldn’t hear that word, ATYPICAL, so damn much.

In this world I see, people would understand that sensory processing is so different for everyone. It can be downright painful for some, and never given a second thought by others.

People would be better about not taking the little things in life for granted, like outings outside of the home that for some, like my boy, require navigating a battlefield of anxiety, sensory input, and communication barriers.

They’d know that nonspeakers still FEEL greatly.

There would be just enough awareness for people to be kind and patient with those who are different.

Yes, that world would be so nice.