She was born on a chaotic night in the hospital when seven women, including myself, were in labor simultaneously, each on the brink of giving birth.

Different doctors hurriedly came in and out to check on me while the other women started delivering their babies.

My baby girl happened to be the last of the seven, arriving precisely at 12:01 am on July 2nd, making her the only one among them without a July 1st birthday.

I always tease that she just had to stand out from the crowd.

She smiled on her very first day. I know, I know, some might say it was just gas, but she has always smiled in the same way, as if to greet the world and say, “Hello!”

Her name was inspired by two fictional characters, one known for her vivid imagination and mischievous spirit, and the other for her ability to think outside the box and unapologetically be herself.

She’s shy and will hide behind my legs anywhere new. But once she warms up she’ll talk your ear off.

Singing and dancing bring her joy, and she makes up the best songs and stories.

Her current music favorites include Rihanna, Janis Joplin, Queen, and Kelly Clarkson.

In the evenings, she joins me to watch episodes of “The Office” or “Seinfeld” and laughs as if she understands every bit of the humor.

I adore how, whenever I tell her that we’re going somewhere, she always asks, “Is the whole family coming too?” She loves keeping us together.

She has a generous and kind heart. Even this weekend requested cherry pie for dessert on her birthday dinner, only to reveal on the day itself that she had chosen it because everyone else likes it, not because she actually wanted any.

Her smile and laughter warm my heart. Whenever I leave the house without her, she rushes over, exclaiming, “Mom, kiss and hug before you go!”

She’s my precious girl, and I love her so!

Happy 5th birthday, Ame Lu!

A few months ago, I was reading Viola Davis’s book “Finding Me,” and she mentioned writer, Joseph Campbell and the Hero’s Journey. She wrote “a hero is someone born into a world where they don’t fit in…”

Though Davis and Campbell were both discussing literature and characters, my thoughts immediately turned to my autistic son.

I’m not one to label autism as my son’s superpower. Others have done so, and will continue to do so, and while I don’t mind, I don’t want to burden him with the expectation of idealizing something that he may not want to. When I say “hero,” I don’t mean it in that sense.

I want him to define autism on his own terms, based on his own desires and choices. I’m uncertain what path he will choose. Perhaps it will simply be a part of who he is—a struggle at times, and a strength at others.

We all have the power to interpret our experiences, whether we choose to or not.

So, when it comes to his own journey, I want him to understand that he is the hero of his own story.

He was born into a world that currently offers little space for him and others like him. That, in itself, makes his life challenging. He must fight, confront the obstacles, and overcome them—all for himself.

My son was born a protagonist. His “Call to Adventure” came on day one.

I don’t know if I am deserving of being his mentor, but I will be his ally.

While he is young, I will advocate for him and create a space for him in this world. As he grows, I hope he will communicate where he needs me to be.

If he wants me by his side, I will gladly stand there. If he needs me to maintain a distance, I will do my best not to interfere.

It wasn’t supposed to be like this.

I’m ashamed to admit that this is how I feel somedays.

Don’t get me wrong, I never expected parenthood to be easy, and I know we don’t have it the hardest. But when I get the rare chance to reflect, I feel it.

The exhaustion of living at a heightened level.

There’s always something in life with a child with autism. It may be a new behavior that has popped up or resurfaced, or a program that requires hours of paperwork, or never-ending appointments.

Then there is the constant watching and awareness of everything.

Where is he? What’s around us? What could go wrong?

Recently, my daughter was diagnosed with a rare blood disease. Like my son’s autism, it was always there; we just didn’t know it.

Suddenly, life is more fragile. She is more fragile.

Now, my attentiveness increases. The appointments double, maybe triple. I’ll never be relaxed. We will get used to the rhythm of it all, but there will never be ease.

That’s the thing about motherhood. It’s there until the end, and I will worry for my children until my last breath.

I have always known that since the moment I decided to be a mom. I just underestimated the intensity with which it was handed to me.

My love for them is eternal and our life is beautiful. Although, I wish we could escape the outside expectations, although we need them. We need the help. We need the care.

One of my children needs it to grow and learn, and the other needs it to stay healthy and safe.

It’s hard to describe the yearning for control over our lives as a family. We have to let so many others in. It doesn’t feel like it’s just ours.

It wasn’t supposed to be like this, but who can say what it should be? This is who we are. I’m trying to embrace it; these days I just can’t seem to find the time.

I grew up with a learning disability. It’s still there, but I have figured out my own way of how to navigate life with it.

I have always felt different and felt behind everyone else.

As a child it often baffled me how other people could just “get stuff.” Nothing came easy to me.

Reading and writing were the hardest for me. At times, I excelled in math or science, but the disability always caught up with me, and I slipped back behind.

My family always did and has supported me to this very day, but I have always felt pitied by others.

In school and life, average has always been the goal.

By the time I got to college and had myself figured it out, and I did well.

I excelled in class, but even well into my junior year when a professor, who had no knowledge of my disability, complimented me on my writing my first instinct was to think that he was just being nice, or trying to build up my confidence.

I would constantly have to remind myself that my GPA and eventual degree wasn’t just given to me. That I earned it. That I was good enough.

In my adulthood, I have come to find that whenever I walk into a room or meet a new person, on a subconscious level, I automatically assume I am the least intelligent person there. Immediately giving those around me the upper hand in my head.

I constantly try to be the hardest worker as if I need to prove myself.

Certain people from my past even still talk down to me or direct questions about more academic subjects to others when in a group. It stings and doesn’t go unnoticed.

Most of this is projection and self-doubt I have created in my head. But there is still a little girl inside of me who always feels last. Who never feels good enough.

Now, as the mother of an autistic child who will never learn in a typical way, I want nothing more to build him up.

I don’t want him to carry the subconscious weight that he is not smart enough because he doesn’t learn the same way as others.

I want him to know that the only reason he feels that way is because the world is catered to a majority.

A majority who doesn’t get to see the world like he does.

That, yes, he will always have to work harder but not because he is less than anyone, but because he has to meet them where they are at, because most seem to be incapable of thinking like him.

He is always good enough.

Something that autism has gifted our family is that it has opened our eyes to another world. We get to see the lives of many people affected by disabilities.

When we are at a sporting event, camp, or conference for my son filled with children and adults of all different abilities, I see more love and acceptance than anywhere else.

I love that both my children are surrounded by it. They have seen the beauty in differences from the beginning.

At the same time, I have one foot in the typical world. Where there is also beauty but it’s harder to find.

When I’m in the typical aspect of my life, I feel like I’m running.

I feel like we’re all running in a race that no one is really winning.

While I’m running, I have a hard time looking forward to the finish line. Instead, I’m looking around to see where everyone else is in the race.

It gets me down. I’m running as hard as I can, and I only see those passing me, but I have to run.

Other times, I feel like I’m just on the sidelines watching other people run.

Sometimes I’m in the race, and sometimes I’m out.

And when I’m on the sidelines, I meet other people who aren’t in the race. I find companionship in them.

I find others who fall in and out of the race like me, but some who are rarely in.

Often watching the others run by. They have to wait to be visited on the side.

The people who are mostly on the sidelines humble me. They cheer for me. They remind me that winning the race doesn’t really matter.

I feel lucky to get to know those people.

They are the ones fighting battles. The ones who have been down and back up over and over.

Whenever I spend time with them and then get thrown back into running. I can look around and pity the people racing so hard that they forget the reason they even started running.

Alone, sometimes it’s hard, and it hurts to be passed by, but really, I’m lucky to get to see the race for what it is. A journey.

Last night I laid in a full-size bed, inside a tent, under a train blanket, with my 8 year old son.

He had just fallen asleep. Beforehand, we talked, sang, and laughed. He asked me to hug him tight, and I did as he fell asleep. Slowly releasing him before he completely drifted off. Tight hugs are one of the few things that help him calm his body.

Sleep doesn’t come easy for my boy. You can judge and give suggestions, but we’ve tried it all.

My son is autistic and for that reason, his body and mind do not function like most.

I think about that a lot. In many ways, but mostly from my heart.

I want to make his life easier. I want to know how he ticks so I know I can make it easier.

I’ve come to know my son better than anyone else knows him, through the last 8 years, but at the same time, so much is a mystery to me.

As he slept, I ran my hands through his hair and thought about our beginning. I thought about how I have wondered what was going inside his mind since day one.

He was a very alert newborn. Eyes always wide open. Almost as if he were shocked by the world.

I remember watching him for hours at five months old, as he’d roll on his play mat and stare at the toys that hung over his head.

At one year old, I remember specifically trying to explain things to others. Like how he interacted with some people but not others. Or why you really had to play with him to get him to laugh and smile.

At eighteen months, when he got really quiet, I began to yearn for communication. I never knew what he wanted. Everything was a guess.

Two and three were battles with the world. Comments from other people. The meltdowns that led to stares and whispers, even from loved ones.

He rarely slept. I feel like he was often over tired and dysregulated. I read all the books. I tried everything.

Evaluations began, and the idea of autism became a speck that floated around in the air.
Not yet confirmed, just a maybe.

My heart ached just to know. To have an answer.

At four years old, the answer became clearer, and just before five autism was confirmed.

Like I had been doing all the years before, I continued to blame myself.

I thought about every choice I made during pregnancy; did I stress too much, exercise too little, work too often, eat the wrong food, take the wrong medicines?

That analysis continued onto my labor and delivery all those years before. I maybe shouldn’t have eaten all those dates someone told me would start up labor and walked around for miles in an attempt to quicken the process. Was it the decision to have an epidural?

Worst of all, I thought of the prenatal depression I had. Did my distanced state to the baby in my belly cause this?

Every single bonk and little fall he had as a baby even crossed my mind. Then the problems we had with his sleep in those baby and toddlers years. If he got one bit overtired, it was all over. Meltdowns and night terrors came often.

I criticized and analyzed every choice I made as a mother and even before.

Was it in my DNA? Was it from me? I have reading and writing disabilities. Was it connected?

It all ate away at me.

Over the last few years, I’ve realized that I can not do that. I can’t over analyze what I did wrong. That would mean something was wrong.

I know how far I have come. It still stings when I hear the terminology that some doctors and other professionals use when it comes to my son. As if he is a problem to be solved or someone who needs to be fixed.

This sweet boy, with his crazy curly hair and silly sense of humor, is everything he is supposed to be.

Do I wish I knew better how to help him cope, learn, and do all the things he wishes he could? One million percent.

Although we are still early on in our journey, I have learned that those things come with time. As long as we are always working to understand what he needs and how to help him.

The biggest key, though, is the heavy task of changing the world. To reach a point where there is no longer a need to explain him and his behavior, by teaching people about them. Teaching others to accept him and others like him.

That just because his brain works differently, he still belongs. It just means we need to make space for difference.

My sweet boy turns eight years old at the end of this month.

Today, I made his party invitations. He is autistic and, like most things, that makes his birthday parties a little different.

There are a lot of wins this year when it comes to his birthday planning. First, he picked where he wanted his party and was very excited about it. He helped me decide which party room at the venue he wanted, Lego. He even said, “I love Lego,” when we decided.

Tonight, while sending out the evite, my husband asked J if there was anyone he wanted to invite outside of cousins. My son stared at me, confused by the question.

I didn’t want to prompt “from school” or “from therapy” because a few different things might come as a short unclear answer. Most of those could result in him expecting children to come who probably wouldn’t.

He might have said nothing. He might want to invite a child who doesn’t consider him a friend.

He may have wanted me to invite all “the children”, as he refers to them, which leads to more confusion and disappointment.

Little moments like this sting. When they happen, a flash of a different version of my child’s life passes through my mind. I don’t dwell on it, but it happens. I wish I could help it.

The beauty of my sweet boy is that after a long pause, I mentioned his cousin’s names, and he added his sister’s name all on his own. I asked if it would be a great day with all of them there, and he said “yes!”

The older he gets, the more sad I get that he doesn’t really have friends. He doesn’t run around trading pokemon cards, chatting about video games, or riding bikes with friends.

Sometimes, when we see children his age engaging in typical conversation or play he’ll attempt to join in, and it’s met with awkwardness. Sometimes, I see him try to mimic their play on the side or later at home.

I know he is starting to notice he is different. I hope I can show him that that difference is beautiful.

Although moments like tonight prove he is happy with the relationships he has. He is happy playing on his own and with those who understand him.

His happiness is all that matters.

My son, Jesse, who has autism, and my typical nephew are both in first grade at the same school. They have a couple of classes together and lunch at the same time. Yesterday, my nephew told me that he tried to sing Jingle Bells during lunch, but Jesse wouldn’t let him.

As soon as my nephew told me, I knew what had happened. Jesse doesn’t always like it when others sing, and he wants to be the only one singing at times. Other times, I think it just bothers him. He usually shouts “stop singing” at us, especially his little sister. We’re constantly working on it by reminding him that there are nicer ways to ask, or if he can take a break from that situation.

I apologized to my nephew and talked to Jesse about it with him and then later just with J before bed. But lying in bed last night, I felt down, imagining the situation. I saw a group of kids sitting at the lunch table, my nephew singing the song, and Jesse abruptly shouting at him to stop repeatedly.

Although I don’t get to see Jesse in many social situations with kids his age, I’ve seen him with his cousins numerous times. I love them all so much, but I have seen that moment in all their faces – the moment they realize Jesse is different, the confusion of why he is doing what he is. It’s usually followed by a question like “Why is he doing that?” Or “Why is he like that?” It breaks my heart every time because once it happens, the relationship changes.

Of course, it’s sweet when they ask questions, and it’s a good opportunity to educate them. My nephew is around Jesse the most and just knows he is just who he is. But when I imagine this lunchroom moment, I can see that look on many children’s faces – my son’s peers, my nephew’s peers. They might give Jess a dirty look because he sounds rude, they might  giggle or laugh at him, or call him weird. I fear this will change the sweet cousins’ relationship.

I hope my nephew can explain to the other kids about autism and help my sweet boy realize he’s hurting feelings. However, that’s a lot to put on a six-year-old, and he was probably embarrassed. It’s hard, and it hurts my heart as a mom.

Jesse is turning eight soon, and kids are starting to notice the differences. I see so much beauty in the differences, but I don’t know if they will take the time to see it too. I just hope they are kind to him.