When You’ve Lost Yourself in Motherhood

I stood alone on a dark bridge on a warm summer night. I listened to the creek below as it attempted to drown out the sound of my children and their cousin, playing several yards away.

We were at an unfamiliar park for a small family gathering. I left my two kids with my husband and some family to walk across the park and get some alone time, a rarity for any mother.

As I wandered, I came across the bridge surrounded by tall trees, which blocked out any street lights.

I walked halfway across and stopped when I felt a chill trickle down my arms and neck. It took me a second to realize that it was fear.

I was frightened.

Frightened that maybe someone might jump up and grab me. As if something paranormal was right in front of me cloaked in darkness.

I chuckled to myself.

Continuing to stand there frozen I actually enjoyed the moment.

That might sound insane but it had been a very long time since I had felt scared in that superficial, perhaps unrealistic, way.

Ever since becoming a mother, my fears and anxiety have become massively palpable.

No one properly warns you of the pure anxiety and worry that comes with motherhood.

It is constant. Unbelievably intense.

It may not be that way for all mothers but I know it is for me and many others.

The moment my first child was born, something arose inside of me. A mixture of trepidation, unease and mistrust in myself became all consuming.

This beast had risen in me here and there in the past as a big sister and as an aunt. I knew the beast sat within, but suddenly with my son’s entrance into the world it was permanent.

That night on the bridge I enjoyed that moment of fear because it reminded me of that girl who used to chase it.

Before I had kids I loved watching horror films and reading horror and suspense novels and short stories.

When people would ask why, I would say that I loved the intensity that came along with them.

I would sit in a theater watching a scary movie or in bed reading a book surrounded by darkness, on high alert.

My whole body would be stiff. Every sound would make me even more tense. My eyes would want to close or hands close the book.

It sounds strange, but I loved how it took hold of me. It engulfed me in a moment of fear that affected my mind and body.

As I stood frozen on that bridge the juxtaposition between past and present became plain.

The recognition of that made me recall parts of who I once was that now felt lost. It brought the realness to anxiety and visceral fear that comes with being a mother.

I have two human beings that I’m everything to. Two people I must help guide through this world.

One of which is on a neurodiverse path that I must help him pave.

They take up so much of me and although it comes on strong in the beginning, day by day I try my best to fulfill my obligation made from love.

I hold so much for them in the ways of empathy and protection. The days of just worrying about my fate, my failures, my triumphs and my feelings are long gone.

Maybe even too far gone, to the point that I really hadn’t been thinking of myself at all.

My time on the bridge lasted all of five minutes but in that time I promised to find some of the old me that I missed. Find the girl who dreamed, explored, created and wandered.

I also laughed a little at how I used to chase fear to just feel and now all I do is fiercely feel everything in ways of empanthly, worry and love.

Suddenly, I heard my children coming closer and turned away from the darkness and steady sound of the water below me. I chose to turn towards them.

The superficial fears would have haunted me for days in the past but the love I felt eclipsed it in seconds.

I walked away appreciative of that taste of reflection and a visit from the ghost of my past self.

“When Are You Going To Get Over This?”

“When are you going to get over this?” My husband calmly asked, as I laid in our bed yet again crying. 

I can’t remember what event involving our son preceded it; Another evaluation, an elopement, an awkward moment at a family gathering or school, maybe it was another long meltdown.

Whichever it was, I was now lying in bed quietly crying and venting to him about all of it. Pure heartbreak and fear.   

After his question, I knew he immediately regretted asking it, not only because it sounded so harsh, but also because I unleashed on him. 

All I could think was, “how dare he.” The answer was never.

It felt like would never get over my three year old son being autistic.

Like a child I scolded him. How could those words exit his mouth as I wallowed?

He of course apologized and felt awful, but looking back I don’t blame him at all. In those moments there was nothing he could have said ‘right’. And the truth was that I needed him to ask the question.

I had become consumed by it all, for nearly two years. I was always on edge, or completely shut down, panicking over everything or pretending everything was fine. 

There were, of course, many happy moments during this time as well. We were always trying; but sometimes it would hit me hard that we were not ever going to be typical.

I would crash hard and he was left behind to pick up the pieces. He had to carry the weight of helping his depressed wife, while we both attempted to care for a baby and our neuro divergent three year old.

He had been patiently waiting for me to reach acceptance.

In that moment of me crying on the bed, I think his revelation was that I was nowhere near.

We didn’t even have an official diagnosis yet, but I knew deep down and yet somehow also held onto the hope that I was wrong.

It did not help that no one seemed to give us a clear answer and it was easy to forget the worry of life long disability, while sitting on waitlists and living day to day in our own home.

At home the differences weren’t there. Yes, we did not sleep and things were really hard, but you don’t realize how big the differences are until you’re out in the world – or sitting across from a professional as they lay them all out before you. 

I hated leaving our bubble. Even more so, I despised facing the truth.

The most important truth was I needed someone to wake me up. I needed to face reality and my husband helped me do that.

Neither my son’s life nor my life was not going to be as I had imagined. I was dreading and worrying so much that in the end I was letting it swallow me.

I was in a dark place back then and I am forever grateful for my husband’s support and patience. 

Several years later I am in a completely different place.

Back then, when we were out I was in full mama bear mode.

Not only watching my son’s every move so that he didn’t run into traffic and jump off something too high, but also watching out for how others treated him. Now I have so many tools to help us.

It’s still not perfect and the bear comes out often but we’ve found our stride.

The thought of our lives becoming appointments, forms and fighting for my son’s place in it all was too much for me. Now I know to take them one at a time and to manage it at my pace.

In the beginning, I feared autism for the same reason people fear so many things. I did not know what it was or what it meant. Today I know so much more.

I have learned from my child, other parents and autistic adults. It’s my job to learn from my son and help him navigate life.

Knowing that my son would never truly fit in this world, broke my soul. I did, and still do, worry about how people will treat him.

Although now, I know to hold my head high and speak up for him. If someone does not make space for my son, they don’t deserve to be around him.

On a morbid level, I was consumed by how long I will be around. Who will help him when I’m not. This will always be in the back of my mind.

All I can do is prepare.

To make sure as many people in his life understand him and love him as possible. Trust that if I’m gone they can step in.

In no way can I speak for all parents of children like my son, but please never silence them. Don’t forget them while their world turns upside down. They may be stuck, or chasing an elusive answer. Be patient with them. Be there for them.

I found myself in a really dark space, in the beginning of our autism journey. I still wrestle with the guilt of that, but I don’t want to hide it.

Sharing experiences, like the hurdle I overcame, is what creates the awareness we all need. I had my husband to reach in and pull me out of that dark place. Not everyone has that.

I hope if anyone is in a dark space I hope they know they are not alone. They are not the only ones to ever feel that way.

I don’t know if I would recommend saying, “when are you going to get over this?” But a helping hand can help pull someone from the isolation and darkness.

Acceptance can come. It does not make everything easier, but it can help you see the beauty.

Hello First Grade

Time to go back to school.

I think I’m supposed to be excited but I still get sad sending Jesse to school on the first day. I love being with my kids. Yes, like every mom I need breaks but I love having my little buddies around.

With Jesse it’s a little harder because he does not love going to school. It’s often a fight to get him out the door and to walk up to the building. Once in he does good but I know he would prefer to be in a million other places.

Jesse’s social skills are very behind. He does not have any friends he is excited to see everyday. He has a hard time figuring out where he fits and frankly I don’t think he wants to fit in.

He wants to do things his way and in his own time. He calls the other kids “the children” like he belongs outside of the group. I think he likes the idea of playing and being in class together but when it comes to actually sharing, taking turns or compromising on anything he wants it’s a different story.

Academically communication creates a barrier. We are always surprised at what he does know and sometimes are surprised by what he doesn’t. I get nervous that he will get lost in the crowd. His behaviors are less but sometimes the quiet child in the corner just gets forgotten.

At the end of the day I know it is what’s best for him. I’m grateful he has a teacher who knows him from last year and can help facilitate what’s best for him. Going to school is good for him. He’ll learn more there and keep busy.

While the house is quieter and it’s easier to get work done, I miss the noise and I would gladly take the interruptions. I just miss my boy.

The First Time I Heard Autism

Hot, sweaty, and out of breath in the middle of winter I sat in a full doctor’s office lobby. Due to construction, the area we were in held patients waiting for the pediatricians as well as those waiting for gynecologists.

It was packed.

My newly two year-old son would not hold still while we waited. I chased him around the room and brought him back to his chair over and over. The waiting area wasn’t enclosed and there were stairs nearby. Not ideal.

Names were being called one by one and each time my son would loudly repeat the name the nurse had just beckoned. This was something I did not expect and that drew all eyes. Every single time. He didn’t giggle or smile after each one. He just echoed her.

I could feel as one older woman waiting a few chairs away watched us with a glare.

I felt her thoughts and her judgment.

She wanted me to look at her. She wanted me to see that she disapproved. Like that was going to change me, change the situation or change him.

Finally my husband arrived to help. I was so grateful, but somewhat ashamed.

Why couldn’t I manage a little toddler on my own? Why did I need my husband to take time off of work to help me? I feel like a failure and also annoyed that he was late.

As he took over I crawled around and gathered all the toys, books and snacks scattered around our chairs, each thrown to the ground as they failed to do their job of occupying my son’s attention.

I got exactly two seconds to breathe when the nurse finally called for us.

I grabbed the paperwork that I never finished filling out in the chaos, and walked to the nurses station.

I hate the stares. The looks of pity. The looks of judgment. I was both grateful and annoyed by the man who said “you’ve got your arms full there don’t cha?” on the way “Yep” I replied with a half smile and probably flared nostrils.

My husband helped the nurse try to get my son’s weight and height. I apologized as the toddler did not follow any of her instructions.

Then we entered the exam room to wait.

Great. More waiting.

I quickly filled out the paperwork. I had filled out milestone paperwork at every doctor’s visit for my son since his birth.

This paper looked a little different but I didn’t think much about it because this was a new doctor for us.

You see a doctor a lot in those first two years. Ten times barring any illness. Only at the last appointment, 18 months, did I have any concerns. His speech had stopped progressing. He barely hit the minimum word count and was often quiet, but the doctor just said; “That happens sometimes, especially with boys” “I’m not concerned.” “He has great gross motor skills.”

Who was I to question a doctor? If she wasn’t concerned, I wasn’t. He’d be fine.

I left that last appointment reassured

Six months later it all seemed like a distant worry. I was still confident it would all come.

We heard a knock and the new doctor entered the room. After a short introduction we began to chat. Height and weight look good, she said. As she talked she began to flip through the paperwork I had just filled out. She was tallying something up.

She looked concerned.

I didn’t even think twice about the paperwork.

I wanted to talk about sleep; Shouldn’t a two year old be sleeping all night? He never settles then he wakes up in the middle of the night or really early wide awake. If he’d just sleep I think he’d be less temperamental.

I never got to say any of this.

She started going on about the milestone paperwork and kept saying “do you guys have any concerns about his development?”

“Ahh…His old doctor didn’t; he rolled, sat, crawled, walked and kinda talked all on time.”

Again, “but do you have any concerns?”

All I could think was why aren’t you asking about naps, eating, sleeping. All the stuff we’d usually cover.

I hadn’t realized that this time the form was a test. A test we did not pass.

She called in her nurse to help start a new test on the computer.

While the nurse logged into the computer the doctor again asked “do you have any developmental concerns?’’ I was growing frustrated and defensive. I felt rushed and pushed.

I raised my eyebrows and said “you keep asking, do you have any?”

The test began::

“Does he ever point?” Not recently.

“Does he show you things?” umm…Not really maybe a plane sometimes….

“Does he bring you anything?” The remote…. (That sounds great)

The questions went on and on. Some were easy. Some we had to think about. Most of them my husband and I didn’t even know that we should have been watching for.

That was the first time we heard it. The word. “Has anyone ever talked to you about Autism?”

Immediately a lump grew in my throat.

I’m not going to lie, like any 21st century mom I had googled things here and there about sleep or and the loss of language; The possibility Autism had come up as a result.

But my son was a cuddly and silly toddler, he did everything else on time so I never even truly considered it. To be honest I wouldn’t let myself.

I sat there as the word echoed in my mind.

Autism

A-u-t-i-s-m

One word people often use to define an entire human being.

I shut down. I was defensive and just wanted to get out of the room. A referral was given and we left.

The whole way home I was Irked and my mind raced; “He’s just behind.” “He’s just shy.” “He’s a boy.” “Everyone develops differently.”

Over the next couple years we battle that one word.

The referral took us to an observation that resulted in a “just a delay.”

Come back in a year if he’s still behind.

We went back.

As I write this years later I realize my relationship with the word has changed, but is always extremely complicated.

My son is not that one word. He is so much more.

I battle with the assumption people make from it. I’m also grateful for the resources and explanations it beholds.

Some days I’m angry at it because I blame it.

I blame it for taking away what I thought was going to be.

Every so often late in the night I loathe it. My son lives in an overwhelming world where anxiety often takes over. A world where few people accept him and understand him and most will never take the time to.

Though, a lot of the time I can find beauty in it. It has changed the way I see the world. It’s part of the most beautiful boy I know. When he feels happiness and joy, It’s greater than I will ever know.

When I first heard ‘autism’ that day in the doctor’s office I thought I knew what it was. I feared it in a way but also did not know what it meant, but now I know so much more.

My son is autistic… and silly…and sweet…and determined… and a million things.

And autism is just a word.

By Jaime Ramos Writes

**You can hear a reading of this piece on the Table For Five No Reservations Podcast,

S5: The Women in Me E4: A Letter to Her

Our Language

This morning Jesse and I were lounging at a water park. He was working up the courage to go in the water with his cousin and sister. Something I knew he’d need the moment we walked in the park.

He laid back eating his chips and as soon he was done he sat up and handed me the bag. He looked down at his greasy, crumb filled hands and then at me. I grabbed the wet wipes from our bag and handed him one.

He scooted to the end of his chair and I knew he was ready to head to the pool.

Not a single word exchanged.

My seven year old son Jesse is autistic and is now considered speaking or verbal.

Since about one, he has always had words. Sometimes just one or two words. Around 18 months he lost many that have slowly come back. Only in the last year has he used them to communicate with us.

He still doesn’t speak as well as his three year old sister, but we are grateful for every word. We are in awe of his voice. And while it is new, I hope I never take for granted his ability to tell me what he wants, needs or likes.

But after years without many words and no verbal communication, I know my son like the back of my hand. With one look I can tell what he is about to do, what he needs and, for the most part, what he is feeling.

Now he tells me things that surprise me, every so often, and I feel guilty. Maybe I assumed a look meant something entirely wrong for years. Or that I thought I finally had my firstborn figured out only to be misled by my own projections.

Over Christmas we were at a Christkindlmarkt. As we walked around it became apparent that Jesse was grumpy. As a mom, I knew he needed to eat but as he wandered off I thought he wanted to see more. I said “do you love all the lights and people?” He responded “no, I hate people. Go [home].” While this mostly came from him being hangry, I knew there was a truth to it.

I want him to want to be out and about so he and our family could do things. Not all the time but sometimes. In my head I knew he was uncomfortable but I thought perhaps he would also be curious. Jesse always needs about 45 mins to an hour to warm up anywhere, but to hear him say “I hate people” hurt me. It felt so strong. I too am not always the biggest fan of people or large crowds, but “hate” felt so strong. I’d never heard him use that word.

A lot of language is still new to us.

Had I’d been forcing him into these situations for too long? Just because they hadn’t resulted in a meltdown I would keep pushing. Not every day, or even week, but every so often making an effort to get out. To help him warm up the world and to educate the world.

After eating for about an hour, he was having fun. Exploring, playing with cousins and enjoying yummy German Christmas treats.

He didn’t even want to leave when it was time to go.

That day taught me that I wasn’t wrong about what he needed or wanted, but I need to take his words into account and to talk him through it. I needed to be there for him.

Today we sat together at a waterpark. We didn’t need words but I knew he needed time and a snack to start the day. And he knew I would have everything ready for him. If he didn’t want to go out in the water at all I would sit with him. Now we have words to confirm.

I love this about us. Our communication runs deeps but we can always still learn from each other.

For those of you who don’t know about autism, some kids never have words and some kids have them but never use them to communicate. There is definitely a beauty to it but also pain. Be kind to those individuals and their caretakers. Just be kind.

What Wasn’t There

Today I took my daughter to the park across from my son’s school thirty minutes before we picked him up so she could play.

It just so happened that my son’s class was out on the playground and we could see him and his classmates.

I peeked over every so often trying to be careful that he didn’t see me. I watched him and his fellow autistic students play. Anyone else watching from my distance would just see children playing on the playground but I could see the differences from a far.

I saw so much beauty. These kids each took to the playground each in their own way. There was a delicate dance in the way they whirled around each other all within their own space. Ever so often meeting to engage and play together in a game of chase or on the same piece of equipment.

I smiled as one amazing para ran around with the children. Coordinating their interactions with one another. Making sure everyone was having a good time.

Then I watched as my son did something he often does; he was at one moment playing with another child and then suddenly walked away mid play. I don’t know why but I turned a little dark inside.

I let the beauty slip and could only think of what wasn’t there; Groups of children chatting, childish games being made up, competition and friendship being built or broken.

I suddenly yearned for normalcy. I imagined my son talking to another little boy or girl about Pokémon or superheros. I wished he could play with friends without help. I realized he didn’t really have anyone he called a friend. I wondered how he felt about that, and then felt the sting of the fact that I didn’t know because we don’t have much of any conversations.

Then the whistle blew, I snapped out of it and I grew angry at myself. I know it’s okay that my son is different. I love my son for who is so much more than I could explain, but in those moments I slip backward. Then I felt sick that I allowed my mind to go there because it feels like I am betraying my child when I do that.

I wanted to share this experience because this is where I am at in my journey as the parent to an autistic child.

I preach and practice all day the value of my son’s differences. I fight for him. I am so grateful for my son and everything he has taught me and the people around him. Nevertheless sometimes I fall back to the beginning; to the time before I knew the good and the acceptance of the new and only wanted what once thought was going to be.

I can’t apologize for it. It simply happens to me and that matters because it’s a process. I have to feel it in my own space. I have to acknowledge it because that is where progress lies.

If you are in a similar place I hope you can find that space for yourself too.

Autism Perceived

Today we went to Target. We make an effort to go out on the weekends to get the kids out of the house and take the opportunity to teach both of them how to navigate the world. Sometimes it almost feels like normal, other times my husband, Isaac, and I come out exhausted for the rest of the day.

Today was somewhere in between. My 7 year old son, Jesse, is autistic and he’s had an amazing leap in development lately. He has had a burst in spontaneous language and appropriate scripting (mimicking someone else he’s heard in real life or on TV). Still not at a seven year old level but that’s okay progress is progress.

The thing is whenever he has a leap like this it seems to come with an uptick in meltdowns and aggression. Before and during the leap. Last week, he had a huge meltdown in front of his school, but today was different. He was on edge. No one big explosion but many little ones.

He was excited to be at Target but wanted to go and only see exactly what he wanted. Today that was video games, the mirror in the men’s clothing section and for some reason the women’s pajamas section. The problem is if Jesse’s in a section, he takes over the section; running, touching, jumping and bumping into other shoppers. We let him wander each for a short time but gave limits. We needed certain things and other people wanted to be able to shop in those areas.

As we tried to steer him away from the women’s pajama sets. He began to scream and yell “I don’t want to go” at us. Fellow shoppers watched as he went from an overactive boy running back and forth to a screaming, yelling and crying boy.

I used to stop to look around before but I don’t anymore. Why? It’s always the same looks of judgment and disapproval. I will say sometimes there are looks of sympathy or very rarely that one woman who continues with whatever she’s doing not even batting an eyelash. I like her.

I walked away with my daughter and as my husband was taking care of Jesse. Sometimes giving him less attention helps. He calmed and moved on until the next one.

Later, Jesse and I ended up in the boys clothing section. He did not want to be there but I needed to get him a jacket. He hid in the clothes and tried to run off. I tried to get him to look at the shirts that had fun characters on them. He wanted nothing to do with them.

A mom and her son, Jesse’s age, were walking through. She was asking him what size he prefers and if he liked this or that. They laughed and talked about some practice he had just come from. I couldn’t help but notice as she would glance at us every so often. She did not approve of the way Jesse was behaving and clearly thought less of me for pretty much begging my child to just stay with me for another minute. I gave her a quick look that said “I can see you watching” and she moved on. I’m sure in assurance of her amazing parenting. Good for you sis.

The whole trip made me think about the perception of autism. Each person with autism is so different. I think that’s why many people cannot recognize it or understand it. There’s no distinct look to it. No two autistic people are the same.

I can’t even really give Jesse a label or function, because nothing sums him up. Like any person he is a spectrum on his own. This makes it hard to explain to him in any one way that others will understand, but that’s also what I love about him.

I just hate seeing the way people see him in these short encounters in the world outside of our bubble.

I know exactly how Jesse is usually perceived.

He is perceived as a brat. Isaac and I are perceived as bad parents. When Jesse was younger it wasn’t as bad, but the older he gets the more the sympanthly goes away.

Jesse is the way he is because he is autistic.

Jesse can speak, but cannot communicate like a typical seven year old. His speech is mostly scripts, mimicking us and familiar terms he uses over and over. He can grow frustrated not being able to express himself. His voice does sound like any other little boy. If you were walking by and heard him you would have no idea of the language delay.

Jesse regulates by moving. He does not hold still well, especially out in public or when he is excited or anxious. He’s hands are always twisting around or touching things. We tried to find spaces for him to move around, but you will never find the kid holding still.

Jesse is a sensory seeker. He has to touch everything but lacks the understanding of why he can’t. He LOVES to lay on the floor. We remind him it isn’t always okay to touch everything, but something in him cannot resist. Gross public floors are a no for me. Out and about I’ll see him plop down out of the corner of my eye and I’ll say “nope, we don’t lay on the dirty floor” and usually he’ll jump right up.

Jesse likes Star Wars and Legos, but loves Peppa Pig, Sunny Bunnies and Word Party the most. Shows made for toddlers. He’s often singing their songs or acting out an episode. Sometimes he gets the whole family involved. We love joining in his world.

Jesse has a hard time interacting with peers. He probably won’t respond to a stranger’s question. Even when we run into kids from school. If they come up and say hi he might just laugh or try to touch their face, he’ll usually just ignores them.

He does not understand personal space. If he’s determined to get somewhere he may attempt to walk right through you. I do try to navigate him around people and apologize when he walks into someone.

Jesse can follow two step directions on a good day. That’s why you’ll see us repeating things to him or reminding him of what he is doing.

He is also just our son. We don’t let him get away with screaming at Target but we have to go about calming him in a different way. We stick by his side and guide him through the world. We aren’t treating him like a toddler, we are teaching him and protecting him.

In our home Jesse isn’t disabled. We create a space for him. Yes, we deal with meltdowns, we help with life skills and take safety precautions, but we know no different. It’s our life.

It’s the outside world we have to worry about. That’s where he isn’t able to do things on his own or get the help he needs.

I write this, like I do everything about Jesse, to spread awareness. If you see someone like Jesse out in public. Maybe give a kind smile or just not stare. Maybe explain to your kids why someone may be acting that way. Maybe just be the love and acceptance we all need.

Be the love.

A Moment of Reflection On Parenting and Autism

A few weeks ago Isaac and I went to San Diego for a quick weekend trip. We’ve had nights away here and there but had not been on a trip alone since having kids. As a parent it’s hard leaving your kids but it’s always nice to take a breath of air.  Even better to do it with your best friend. 

As he and I walked, bag, stroller and child free through Balboa park we came across The Museum of Us. Drawn in by the building’s beautiful architecture, we peeked inside to see a stunning display of totem poles. Having the jarring freedom to do whatever we wanted, without the fear of it being too loud, or us being too loud, or meltdowns, or lack of food options, we went inside and just bought tickets (I know that sounds pretty normal, but quite the treat for us).

Museum of Us San Diego, CA

If you haven’t been there, I highly recommend it. I’m a museum lover and this one hit the spot.  I loved walking the halls reading all the aimless information I could take in. I feel like I never have time to learn anymore unless it is directly related to parenting, autism, or a hobby I specifically seek out and carve out  the time for. It was nice to just be, and to explore.

Then I came across the PostSecret exhibit. It was created by a man name Frank Warren who, after working suicide hotlines and hearing strangers’ deepest secrets, began a project where he invited people to send him their secrets on homemade post cards. 

I had seen the book years ago and was instantly intrigued again. Who doesn’t want to read other people’s secrets?

As I roamed the exhibit, I read the postcards all displayed in different ways; on clipboards,  framed, pinned, shielded in clear plastics, stacked like records, etc. I had a range of emotions. Some were incredibly simple, “I wish it was my birthday all year” . A lot were funny and sweet; “I throw pennies at cars that don’t use their blinker”. Many were sad; deep confessions of things people could never speak out loud, “I write suicide notes to convince myself to keeping living.” They all pierced my heart. They all felt sacred. 

One of the walls of the exhibit had painted wooden boxes with doors. Each door had its own secret. As I worked my way down I opened one and immediately caught a glimpse of the all too familiar puzzle pieces. You know the colorful connected shapes that scream autism. I knew I would feel this one.

The card read “I’m dedicating my life to Autism Research, but I know I’ll never be able to cure my brother.” I froze. I felt my mind zoom back into my real life. Where I am a mom to an autistic child. To where I worry and overthink. My moment of escape, gone.

Museum of Us, PostSecret Exhibit Frank Warren Artist, Unknown.

We don’t speak of a cure anymore. Really right around the time autism entered my life organizations like Autism and TACA were dropping the word “cure” from their names, the advocacy generally moving toward awareness and acceptance. I have watched parents lose themselves chasing that cure. I’m so grateful we never went down that path. 

I did not judge though. This was likely older and I get it. You want to help someone you love and a cure sounds like an attainable solution. The reality is a cure isn’t needed nor can one exist.

As I stared at those words, I wondered about this person. I wondered where they were and if they’ve changed. I thought about their brother. Could he speak? Does he hurt himself? Did the world crush him? I thought of all the reasons this sibling wanted to help him. 

And went as far as to dedicate their life to curing him.

It made me reflect on my own journey. How when my son was diagnosed, we were told the actions to immediately take to help him, to possibly fix him. How in the beginning my heart was broken, my fears were fulfilled and I felt like I could never measure up to be his mom. How I too had to dedicate my life to some yet unknown solution.

In the end, that solution had nothing to do with him. There is no fixing my beautiful boy. It was me who needed to change. To accept. 

I hoped the person who wrote that card found that out also. That they weren’t chasing a cure anymore. That their goal became fixing the world to love their brother instead of fixing him to fit into it. 

As I walked the rest of the museum my mind remained there, standing in front of that postcard, reflecting on where I was on this journey.  Autism isn’t easy. Life will never be easy for my son, but as a mother I want it to be easy in the most simple ways. I wish he did not have to fear the world; I want him to be able to relax and enjoy it without having to worry about it being too loud or bright. I do not want people to take advantage of him or be mean to him. That’s just me being a mom, but my son is who he is.

Instead of searching for a nonexistent cure, I write and talk about who he is, to spread awareness that hopefully begets acceptance for him and others like him. I help my son manage his emotions and figure out how to self regulate, whether or not that looks strange to others. The best thing I did was to join my son’s magnificent world. I have learned, and continue to learn, so much there.

I’m grateful we had that trip and I had that moment in front of that postcard. As I took that time to swim to the top of the parenting pool and take a breath of fresh air, I was able to see the progress; to see how far I had personally come as a mom to an autistic child and as a human in general. 

The Day She Realizes Her Brother Is Autistic

Somedays I wonder about the day she’ll realize how different their relationship is.

Realize most little sisters didn’t speak for their almost 7 year old brothers, or explain things to them, at only 3 years old.

Realize her friends did not usually make sure someone was holding their older sibling’s hand, when crossing the street.

Realize not all sisters rushed to tell their brothers to take a deep breath or that it would be okay, when they were having a meltdown.

Realize the number of times she was quickly handed off to a family member, while mom or dad had to attend to her brother.

Realize how often she had to leave somewhere early because it was too hard for her brother.

In some ways I fear that day. Will she resent us? Or worse, him?

I hope not.

When that day comes I hope she can see how amazing that she was and is.

That she knows no one ever asked her to do those things, she just did and that is astounding.

When it all becomes too much, I pray she knows that while she is a defender of and a comforter for her brother – that she is just as important and just as loved.

I hope she sees the road she’s traveling isn’t easy for either of them, but they will both be better people because they have each other.

This Holiday Season I See You, My Autistic Son

The snow, the decorations, the family. I know you love it all with every fiber of your being. 

Sometimes, as I explain to others how hard the holidays are for you, I listen to my own words and I know that it sounds like you can’t stand this time of year. But that couldn’t be further from the truth. 

You love it. You love it so much that it engulfs you. It becomes too much. 

You need the ever constant rhythm of your life and you want to step outside of it to celebrate, but it’s hard.  

You want to be around everyone for the big dinners and the fun but you hide from them. But don’t worry, if you want I’ll hide with you. Laying you down and rubbing your back on someone else’s bed has become our own little tradition.

You love seeing the wrapped gifts under the tree but can’t understand why we have to unwrap them. 

That’s okay. I can hear it now; I can hear the higher volume of each voice as it claws over the others, I can hear the wrapping paper tear and several people calling your name. It’s so confusing and loud.

And I can feel it too; How the pressure of everyone watching you open gifts is suffocating, how you can’t understand that people expect you to react to each item, and then how it almost becomes a competition to win your smile.   

So I sit with you in the corner. One on one. Creating our own bubble amongst the mayhem. 

But throughout the season I see all the things you love so much;

Like the Snow. 

When we get that first heavy snow with the big flakes, you and I go stand outside and watch them fall. We stare up and watch as each one of them hits our faces. You jump for joy and then become completely relaxed. A calm I rarely see. A peace of sorts. It’s your heaven on earth. 

And then the decorations.

You love decorations, especially the big tacky ones I can’t stand. You know where all the inflatables are in the neighborhood. I’ve even gone against every fiber of my being and put them in our yard. You stare out the window and look at all the beautiful lights on people’s houses. Wherever we go we search out the lights and decorations. My favorite way to see them is in the reflection of your eyes, where they sit content, and I know that equals joy.

Then being with family.

I know they can’t tell, but you love having your family together. In your logical mind it’s a must. We see family on the holidays. You love seeing everyone else’s excitement.  You come to me to point out who’s there, whether or not you dare to greet most of them. You hide in your room and run out every so often to check who’s there. When you and I go back alone I can see you stimming and smiling. So happy people are there enjoying the holiday.

As you grow, I want to thank you for trying. Trying for me. Trying for us. I see you come out more often. I see you playing with cousins for as long as you can.
 

I see you stay the whole time during the gift opening because you know I want to be there to watch your sister. I see you have a hard time at night. The long day reels through your mind. As you script and loop. I know you don’t just do it for me or anyone else. I know you want to be there and it takes every fiber of your being.

Just know you are never on your own. I see it all. I see you and I am always watching to help you through it all.

As I help you through, I want to thank you for helping me too. Helping me see the holidays so differently. Helping me see that all the decorations are beautiful. Helping me find the peace in the snow. Helping see that it’s fun just to lay underneath the tree and look up at all the lights and all the branches. To help me feel and appreciate every ornament. To sit in the dark by the tree and watch a train go around and around. 

To take a step back and see the beauty in all the small things. To see that holidays are made up of a million little things and to take it in, one piece at a time. 

Thank you.