When I Questioned If I’m ‘Self-Absorbed’ for Writing About My Son With Autism

When I lost my daughter many years ago to congenital heart defects (CHD), it never occurred to me to write. She was so medically fragile that I don’t think I had time to think about much more than keeping her alive from day to day. With my son, Drake, things have been different. Drake, who has autism, is so healthy and full of life. Despite anything we have faced or will face, he has brought such healing to my husband and me. When you’ve lost a child and survived, it takes quite a bit to rattle your cage in the future.

My instinct has always been spot-on when it comes to my children. Drake was no exception. I knew before Drake was a year old that something was different. I think after the initial shock of an autism diagnosis and all the “what ifs” that come with it, most parents just get into a groove and do what they need to do for their kid.

Someone said to me several months ago: “You are self-absorbed.” “I understand why Drake is the way he is.” “Thankfully, he will never be able to learn from your example.”

Typing those words gives me an accelerated heart rate.

These words have popped in my head on a regular basis. The words were thrown out in a complete rage, but they were unforgettable words nonetheless. Words can be powerfully binding.

Since that moment, I have pondered many things. When people are angry, they often speak the truth. I believe this person truly believes I am self-absorbed and have somehow caused Drake’s autism. I assume this person also has no understanding of autism and believes Drake will not have the awareness to understand what a horribly selfish person I am. It all makes me laugh and breaks my heart at the same time.

So, the last several months, I have reflected on many things. Am I self-absorbed? Why do I write and have a Facebook page about Drake?

I do it for me. I’m doing something to make me feel better.

Is that selfish? Does that make me self-absorbed? I certainly hope not. I do it because it helps me connect with a community of others like me. It helps me continue to understand my son and how he learns and understands the complicated world around him. I do it to stop the mind-numbing fear that grips me from time to time. Writing helps me heal, but there is more to it than that.

I want people to see this little boy is more than a diagnosis. People must understand that Drake is aware of much more than they realize. He doesn’t talk, but he understands. He doesn’t always look at you when you speak to him, but he hears you. I want people to share in our joy when he makes progress. Why? Because Drake making progress gives other parents hope. I was once a parent of a newly diagnosed child. I wanted desperately to read about hope and good futures. I want people to see how being a special needs parent can be hard, but it’s also humbling, inspiring, joyous and extraordinary.

I am doing everything humanly possible to help Drake gain independence, be self-sufficient and understand this complex world. Sometimes writing helps me make sense of it all. When I write, I am exposing my feelings, something I have trouble doing verbally. It leaves me feeling naked, raw, humble and at peace.

Being Drake’s mama is part of my calling. My calling throughout life has been difficult, but it has also been beautifully blessed. If being an advocate for Drake, sharing our journey and fighting with everything I have to make this world a more accepting place for him makes me a self-absorbed person, then I am — and I’m proud of it. My prayer is that one day Drake will know I did all I could to make sure his future was full of nothing but happiness. Somehow I don’t think my mama-lovin’ little guy will ever think I am a horrible person.

As a fellow blogger reminded me: “Don’t dim your light just because it’s shining in someone else’s eyes.”

boy wearing green long-sleeved shirt

Follow this journey on Walking With Drake.


girl wearing bunny hat sitting in a shopping cart

To the Woman Judging Me When My Child Screams in the Store

It’s hard not to notice when a child is screaming and crying in a store.

I’ll admit it: Before I had kids, I would see or hear that in a store and cringe. Many thoughts went through my mind…

“Why do they have him out so late?”

“Why can’t she quiet her down?”

“Looks like somebody is tired, he obviously needs a nap.”

“It’s obvious they indulge her too much.”

I was totally that person!

I don’t believe in karma or “what goes around comes around.” I believe in lessons, life lessons, and I’ve learned and been taught many of them.

I’m that mom now, the one a younger version or an older, childless version of me is silently judging, or quietly and sometimes not-so-quietly talking about in the grocery store.

My child is the one screaming and crying and, yes, sometimes kicking, hitting and thrashing.

I know I’m being silently judged. I feel your eyes on me and on my child, and I have all kinds of feelings in that moment.

First, I’m thinking, Make sure you catch her if she throws herself to the floor or the parking lot, and be ready to chase her if she bolts off, and if she bolts off, Make sure you grab her older sister and keep her safe, too. 

Second, I’m thinking, Where is the closest exit and where is a good place to leave this shopping cart if it comes to that, oh and Don’t forget to have the car keys ready in case you have to carry your 35-pound toddler out the door… you need to be ready, and make sure you have a tight grip on her slightly older sister… safety first! 

Third, I’m thinking of the map I made in my head of the parking lot and how to get both of my children safely into my vehicle, while carrying my visibly, physically, emotionally upset autistic 3-year-old who in that moment is stronger than me, while holding onto the hand of her 4-year-old sister.

Lastly, I’m thinking, How am I going to get groceries now?

So no, I’m not thinking about you and what you are saying about me, my child and my parenting skills.

I’m thinking about how to keep my children safe and still be able to do what it is we need to do.

I’m also thinking how very uneducated I was way back then about disabilities and what other people are living with, and how wrong it is to pass judgment.

This is one of the most important life lessons I learned!

girl wearing bunny hat in shopping cart
Melissa’s daughter

Follow this journey on Melissa’s Facebook page.

I Have Autism, but I Have Autistic Friends

I have autism, but I have autistic friends.

I use this phrase because my preferred language is person-first; however, I have lots of friends who prefer identity-first language, and I respect their decision.

I have stayed quiet on the language issue for too long. Now is the time for me to have my say, as the issue seems to be blowing up. I personally like to use person-first language, because I am Lottie and I have autism. Autism is a big part of who I am, but it does not define me. I feel as though using identity-first language makes my autism define me. It makes it seem like they are saying this person is autistic, and by the way, they’re also Lottie.

However, I also understand the merits of using identity-first language. I understand person-first language separates the person from the autism and identity-first language makes it fully integrated into them.

What I don’t understand is how we are letting a matter of language tear our community apart. I got accused of writing the most offensive post a person has ever seen, because I used my preferred language, person-first, and their preferred language is identity-first. I believe if you don’t have autism you should always use the preferred language of the person you are talking to. If there are two people with autism talking, I believe you should both use your preferred language, and accept and respect that the other person may not use your preferred language.

If there are people in the community using both types of language then there is a need, and a want, for both types of language. So we shouldn’t let this tear us apart from the inside — we have enough people trying to tear us apart from the outside. Let’s take this and show the world that although we may be different, we are united as one, we respect each other’s views and understand that what I think isn’t what everyone thinks. Let’s show a united front to the world, and show in our differences that we will unite to fight for our rights. Let’s show them we won’t let anything stop us.

Who’s behind me on this one?

I have autism but I have autistic friends. That fact will never change.

man and woman on sailboat
Lottie and her boyfriend sailing in California

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability, disease or mental illness (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

When I Couldn’t Express Why I Felt So Bad, My Pet Rabbit Helped Me Talk

I always wanted a pet dog. Mom hates dogs because when she was 4 years old, a van pulled up at the park, and the driver let a load of Greyhounds out of the back that ran toward her and knocked her over. Needless to say, this became a phobia of dogs that I, as an animal-loving child, could not understand. I became frustrated that she didn’t listen to my constant begging for a dog.

When I was 15, things changed… well, a bit! Although a dog was still my number one pet choice, I compromised and got a rabbit. Well, two rabbits, but that’s a long story that doesn’t relate to this one. We named her Jenifer, which is a Welsh name meaning “white wave” — an apt name given her white stripe, which looked a bit like a wave. Jenifer came along at a time in my life when I felt things would never get better.

I was living with undiagnosed autism, Tourette syndrome (I was in denial!) and severe mental health problems including depression, OCD, agoraphobia and anxiety disorder. At school, I was routinely beaten up, spat on and called the R-word. It got to the point where I became suicidal as I was unable to communicate well about why I felt so bad. Jenifer changed everything. Whereas before I felt I had nothing to live for, I now had a little, fluffy life that depended on me.

We had intended to keep Jenifer outdoors, but she soon came into the house on a regular basis and became part of the family. She licked the tears off my face when I cried, nipped my hand when I was stroppy and flopped next to me when I was having a meltdown. She got lots of petting and cuddles in return. Even Mom, who had promised herself there was no way she would love this rabbit, began to love her!

Jenifer helped in a way that no one had expected. She helped me to talk. Yes, I was verbal before I had Jenifer, but I rarely expressed my feelings or emotions through words, mostly echoing lines from whichever TV show I was interested in at the time or rattling off the names and statistics of all 150 Pokémon (back when that was all there was). I could now start a conversation with someone about Jenifer, and as people often liked talking about pets, it was something that was seen as less “inappropriate” than my “Futurama” obsession.

Unfortunately, Jenifer passed away when I was 23 years old, but I am always thankful to her for keeping me alive through those difficult years. My life now is shared with two rabbits, Barney and Lorenne, and a hamster called Gandalf. Though they aren’t as affectionate as Jenifer was, are all lovable in their own ways! Before you all run off to buy your own “Jenifer,” remember that pets are a huge responsibility, and you may have to take over if your child (regardless of age) gets bored.

black and white rabbit

Follow this journey on A Lifetime of Labels.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

To the Director Whose Comment About ‘People Like Me’ Saved My Life

Six years ago, you changed my life. You didn’t know it then, but you simultaneously crushed my dreams, broke an immense part of my core and unknowingly cracked open the door to my ideal life.

That fateful day we met to discuss and plan the upcoming semester courses. We started a conversation about why I chose music therapy. Having disabilities, I already innately knew and understood how music therapy was beneficial. I saw the importance the work has on others with disabilities, and I felt as though I’d provide a different perspective, much-needed value and insight in the field. The only thing I distinctly remember was the blow you delivered: “People like you don’t practice music therapy. Music therapy is done to you.”

It left me in complete, utter shock. Since it’s my nature, I was stubborn and continued to plough through as much as I could. Substantial discord ensued that affected other parts of the school and my functioning rapidly decreased, both from those situations and outside personal events. After a few months, under unjust rationale, the administration felt my involuntary removal was best.

To say it affected every facet of my life and being is an understatement. By the time I could surface from the damage and shock, start to briefly acknowledge it and file a federal complaint for discrimination — four years later — the agency stated the statute of limitations had passed.

I cried a lot that summer. Deep, body-heaving, energy-draining cries for the loss of who I was, the discrimination I received for what was wrongly viewed as my “inabilities,” and not being able to take a stand.

But I’m not one to back down in letting my disabilities ultimately define me.

Self-healing doesn’t happen overnight. It’s a continual, ongoing process. For years there was constant questioning and denial in my abilities and self-worth and numerous struggles and setbacks. I had weeks or months when I felt on top of the world, but as I continued to peel back layers and delve deeper (sometimes without intending to), I’d be pulled down again. And there you still were. Your words tinged and permeated everything, always there, subconsciously whispering behind my shoulder. I refused to see or acknowledge it; better to bury it. For the last year, it’s finally been a twitch.

Then a few weeks ago, it quietly came out of the blue in the recess of my empty mind. The revelation was so clear — I was viewing it completely wrong. I was continuing to look at it from a victim mindset, when really, why and how could I continue to think of myself and live my life in that way? What good did that serve? Instead, those words were truly a gift over the years, leading me to where and who I am today.

Had I continued on the initial path and goal, I might never have known the fire and creativity that lay dormant, hungry for seedlings of knowledge and experience that can only be learned through heartfelt, tough instances. I wouldn’t have realized my soul yearns for and thrives best with an inventive life. I wouldn’t have had the opportunity to know the depth of my strength and resolve that is a crucial, core part of myself. It wouldn’t have given me further gentleness and compassion. I wouldn’t have gained greater patience about how and when things unfold. It wouldn’t have led me to finish my education elsewhere, where by happenstance, I took a class I absolutely fell in love with, becoming so engrossed that it became my foundation. I wouldn’t have been able to take back the definition of who I am and start my healing journey.

Thank you for giving me the opportunity to find and discover my strength, worth and essence. Thank you for your cynicism; it ultimately inspired and invigorated me to tenaciously believe in myself. Thank you for helping me see that I was, can and will be so much more than I could’ve ever been otherwise. If there’s one pivotal significance I’ve gathered, it’s that I need to fully express, live in and be all of me — autistic, hard of hearing and all my other equally unique, amazing and monumental aspects — for me to truly feel alive, fulfilled and real. Anything else would be inauthentic and deceiving. And that’s not how I can nor want to live.

Your words incited me that taking a stand doesn’t always have to be loud; it’s also honoring yourself and making that partnership with yourself a much-needed priority. As a result, my self-worth has grown and multiplied boundlessly. It allowed my true passion and purpose to come through — helping others, with and without disabilities, to realize, embrace and shine their own light as well.

You didn’t know it then. Six years ago, you saved my life.

Editor’s note: A previous version of this story used the word “professor” in the title. It has since been updated to “director.”

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

To the Basketball Team That Made My Son an Athlete

I could think all night about the days when I played softball and even back to my t-ball days if I think way back in time. I have no clue tonight just what my son will remember from his first basketball team, but I hope it goes something like this: “My teammates were great — they all encouraged me to do my best!” “My coach gave me every opportunity to play!” “My teammate’s sister (my new friend) taught me how to get the ball in the hoop!”

I ask you one other thing about this picture that will hang somewhere in our house as a very positive memory: Do you see the kid that fits the description of having an “A” in his or her title? Look close, I’ll wait!

Kids' basketball team and coaches posing for a photo
April’s son posing with his basketball team and coaches

Give up yet? They all do! The “A” I’m talking about is “Athlete!” That’s not the “A” you thought I was talking about, right? Yes, my son has autism, but that’s not the main point here. The main point is how this amazing coach treated my son from the start. This coach treated him just like all the other teammates and thus, in turn, his teammates turned around and treated him the same way. Coach took him under his wing just like the others, drilled him when the others ran drills and gave applause or correction when needed just like he did with the others. My son didn’t have to sink a single basket during a game (although he got pretty good at doing it during practice). He showed up and tried his best, and they respected him for it.

And to you guys, his teammates — you will always be a part of something bigger than you’ll ever know. You made this team sport a success for my son, and your support is a burst of inspiration to us all. It will carry us when times are hard in the days and weeks ahead. It will remind me that inclusion can happen outside of a classroom, where it’s been mandated by a law. All that’s needed is the willingness of a leader who will show his team how. I will think back to when my son was “just one of the boys,” and I will remember that this team made him an Athlete — not because of his ability or disability, but just because he was a kid who wanted to play.

Real People. Real Stories.

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We face disability, disease and mental illness together.