My Words for Other Parents on the First Anniversary of My Son's Autism Diagnosis

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To the parents in the waiting room,

I’ve seen you.

I recognize you.

I was you a year ago. With that worried, shell-shocked expression on my face. Wondering what the future held for my child. I can see your fears like they are a shadow next to you. They whisper into your ear ramblings about mainstream school, lifelong care, what would happen once you were gone.

As I sit watching you I desperately want to tell you, it will be OK. You will work it out. It’s our first anniversary of our son’s autism diagnosis, and things look so different now. Personally, I’ve never been one who took much stock in anniversaries, but on this one I will have a cocktail. It’s worth celebrating.

Our world was rocked too a year ago, when our gruff but brilliant pediatrician unceremoniously kicked my mother, toddler and newborn out of her office. She asked me bluntly, “What stage are you at? Do you need the ‘What is autism’ spiel or shall we talk about next steps?” Surprisingly, time didn’t stop then. It had skidded off to a parallel universe the week before, when our son’s developmental assessment put him 12 to 18 months behind. Meanwhile my husband was en route, stuck in traffic and only just emerging from the void of denial.

Are you ready for the next steps? You don’t have to be yet. Nothing will change if you give yourself time to absorb it. In fact, you may make better decisions if you do. Give yourself time to remember your child is still there. Nothing has really changed. They were born this way, a beautiful, funny ball of energy.

We gain a couple of labels in that appointment: a special needs parent, the parent of a child with autism. Don’t worry, none of us really know what we are doing yet. I was just a 20-something desperately trying to keep it together after having two babies in as many years. I sat across from the doctor at the mercy of two small humans with sleep deprivation, my boobs sore from too much milk and my head exploding from too much information, wondering how the hell I was meant to remember all these “next steps.” It seemed to involve too many people, a rainforest’s worth of paperwork and thousands of dollars — and that was just the diagnosis. But we got through it and so will you.

mom and dad holding two young boys
Rachelle with her husband and sons.

It wasn’t like the diagnosis was a surprise. I very much doubt it will surprise you either. Neither of us ended up in this office without having some serious questions to ask. In our case, our 2-year-old was bashing his head into concrete to the point of grazes. It wasn’t a tantrum, it was our placid little boy screaming for help and unable to find his voice. He was beautifully quirky, but I had long since suspected there was more to it. I had been desperate to be wrong. I’m sure our stories are similar.

I wonder how long you have known? The questions and uncertainty about our firstborn had plagued me since he was still in a bassinet. I kept this to myself and rehashed over and over in my head, always convincing myself I was overreacting, an over-anxious first-time mother. I wonder if you are plagued with the same self-doubt? Or are you blessed with more confidence than I was? I hope so.

There can always be excuses if you go looking for them. I found so many. Silent reflux. Two introverted parents. Pulling apart complex electronics is normal at 2 right? His dad was a genius. I was quiet. I just needed to talk to him more. But sooner or later we had to stop making the excuses, didn’t we? I promise you will accept it, and you can begin to see the beauty of looking at the world through your child’s eyes. It is so different. It is so fabulous.

I know your head may be spinning and the nights can be long. But those feelings settle. Yes, there are important decisions to make. Applied behavior analysis (ABA) or floor time? Both? Those words may not mean anything to you right now, but they will. Arm yourself with as much information as you can find, then trust your instincts and you will make the right decisions.

Living within the vacuum of early intervention can be all-consuming. One of the most poignant lessons I have learned is all this is not so my son Artyom can appear as the world expects him to, but to give him the tools to express himself and utilize all the potential within him. Our routine of ABA therapy, group therapy, speech and psych works for Artyom. You may find therapy is really great fun. Our youngest, Theodore, comes along for the ride, soaking in the lessons taught to his brother.

You can find yourself in a race to stay ahead of the frustration and anxiety that come with being unable to understand the world and communicate your needs. Hold onto your loved ones, face the challenges together. It can be easy for it to tear you apart, but keep talking and understand you may be at different points in the journey, but remember it’s a similar journey.

Over the year the feelings of overwhelm have settled, and we have fallen into a groove and solid routine, much to Artyom’s delight. There’s excitement and relief every time he says a new word, pride when he nails a skill and the occasional pangs of sadness when I see another 3-year-old confidently riding a scooter or some other activity when Artyom spends weeks learning a game. But we laugh a lot, use a healthy dose of sarcasm on the tough days, hold each other up when necessary and love unconditionally.

It’s our first anniversary, and while I’m not quite ready to celebrate this one, I am cautiously optimistic. Please take this year one day at a time and think about it when it’s over. You might find things look radically different. We are at the entrance to the freeway and the traffic doesn’t look too bad; it was bumper to bumper this time last year.

You will find your feet again, and that precious child playing on the floor will be OK, because they have you.

mom and young son
Rachelle and her son, Artyom.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? 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.

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All-Autistic Camera Crew Produces Beautiful Video of All-Autistic Wedding

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groom looking into bride's eyes On September 26, 2015, Anita Lesko and Abraham Nielsen said “I do” in front of friends, family — and a room of people on the autism spectrum.

The autistic couple chose to tie the knot at the Love & Autism: A Conference With Heart conference in San Diego, an event organizers called the “First All-Autism Wedding.”

“My goal is to start the social movement to break down the misconceptions that people on the spectrum do not want and need relationships,” Dr. Jenny Palmiotto, a marriage and family therapist and the founder of Love & Autism, said in a press release for the event. “Autism is always there and love is always there; it’s nothing that an individual needs to overcome.”

Five months later, the couple has released their wedding video (below), shot by an all-autistic crew. They’ve continued to share their story to crush the stereotype that people with autism don’t feel love or want relationships.

“Autistic people have the same need for love, relationships and marriage, just like everyone else,” Anita, 56, told The Mighty in an email. “We might not show it on the outside as well as others, but on the inside we have the same human needs.”

“We are going nonstop as autistic advocates,” she added. “We truly feel that we were destined to meet to be able to work together to help our autistic community.”

Anita says their ceremony was not different than a “normal” wedding, but what she and Abraham experienced was “quite different than what most ‘neurotypicals’ would have experienced.”

For example, as she walked down the aisle, she grew overwhelmed by the harpist playing, the hundreds of people watching her and the aroma of rose petals scattered on the floor. “It all created a totally surreal experience to me,” she said.

The best part of the wedding, she says, was right after the ceremony when she and her husband stopped at each table to greet guests. The positive feedback from both autistic individuals and parents of autistic children will stay with them forever.

“They had tears in their eyes, saying that we gave them hope that their autistic child will grow up to find love and happiness like we have,” Anita said. “That was the greatest gift we could ever receive.”

As they continue to enjoy married life (“We’re inseparable!”), the two are on a mission to help autistic individuals form meaningful relationships and teach non-autistic individuals that people with autism are more than capable of emotions.

“Abraham and I thought it was beyond impossible to ever find love,” Anita told The Mighty, “so it was all the more special to us that we did find the love of our life.”

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How We Told Our Son About His Autism

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It started like every other night. It could have been any other ordinary day. Any at all. The same instructions had been given. The same teeth-brushing arguments, both pro and con, had been repeated. The blessed melatonin had been given. We sat down and pulled open the devotion book, but we never read past the date – April 2.

Before I even realized what I was saying, I asked the kids if they knew it was World Autism Awareness Day. They looked interested and were being exceptionally angelic at the moment. So I took it a little bit further. “You’ve heard the word, ‘autism,’ many times. But do you know what it means?” They shook their heads and wanted to know more.

It was happening. We had anticipated this moment for four years. When would we tell Caleb about his autism? How would we tell him? We decided on the gradual method of slowly, bit by bit and inch by inch, laying down the groundwork. We wanted them to have a firm foundation in knowing everyone is different and that is a beautiful thing. We wanted them to be solid on the fact that we believe God has created each and every one of us so beautifully and wondrously and intricately and intentionally. We wanted them to have the practice of loving others and seeing past differences to the heart and soul.

Years of anticipating this moment, sometimes eagerly and sometimes anxiously, and it was here. Even in those first few moments, I was unsure if I should shut it down. My husband Jake was still at work. He was missing this milestone. But the ball was rolling, and it was rolling down a steep hill. It felt right to allow it to continue on its path. Wherever it led.

We talked about what ASD is and how it can make some things easier and others more challenging. I told them about some common experiences among those who live life on the spectrum. And I simply asked if it sounded like anyone we might know. I could see his wheels turning. I showed them the episode of “Arthur” (“When Carl Met George”), and within 35 seconds, it happened.

Right there, right smack in the middle of our messy living room with the laundry piled high and the dinner dishes still on the table and the trash waiting to be taken out, with us and the dog all squished together on the couch, it happened. It started with his eyes. They looked brighter. After five or so minutes, his face had changed. He looked older somehow. By the time the video was over, he was eagerly asking, “Mom? Do I have ASD?”

I took a shaky breath and said confidently – no wait – I said proudly, “Yes, buddy. You do. What do you think about that?”

And he knew.

And just. like. it happened to us when we received his diagnosis, his life began flashing before his eyes. He was seeing it all with a fresh understanding. His filter had changed.

And he understood.

And he told me about how the things, the hard things, he now knows were the challenging parts of his ASD. And we talked about how far he’s come. And how much he’s overcome. And how he has done the hard things and how he can continue to do the hard things.

And he was proud.

Jake came home from work to find his boy had grown. Caleb seemed to stand taller as he told his dad about ASD and how God had made his brain special.

He went to bed that night having diagnosed our dog with autism as well. “She loves her toy like I love trains.” And any loneliness he might have felt dissolved away in the solidarity of puppy kisses.

He woke the next morning, ready to share himself with the world.

So, world? Get ready. You’re about to get a whole lot of awesome.

son standing by a tree

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When a Parent of a Child Just Diagnosed With Autism Asked Me What to Do

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As someone on the autism spectrum, I’m always trying to advocate for myself. I love to help others when I can and share information and knowledge of what my life is like. My hope is that people can learn from what I’ve been through and apply it to what may help someone else on the spectrum.

Sometimes, I think I’m pretty much set with understanding autism. But I’m constantly reminded this is far from the truth. I only understand my own autism.

I was reminded of this when a parent of a child who was recently diagnosed asked what they should do. I was about to answer the question, but I didn’t quite know how to answer it right away. I sat there for a second and thought about it. If I had a child who was recently diagnosed as being on the autism spectrum, what would I do first? I didn’t know what I would do. Suddenly, I began to understand.

All of this time, I wondered why some parents became so upset with the diagnosis of their child. What is so upsetting about it? Their child hasn’t changed. Don’t they love their child the way they are?

But when I was faced with the same idea and having to answer that question, I finally understood. I began to feel so overwhelmed. There was just so much information and no way to know what was right for that specific child. Who should they ask? What question should they ask first?

I came to a very simple conclusion. If your child has just received an autism spectrum diagnosis, the first thing you probably need to do is just take it in. Just sit. Breathe. Don’t let all of the negative thoughts in your head. Understand that things are going to be different from what you thought they would be like. Then sit and breathe again. Remember that it’s OK to take things slowly and ask for help.

Remember that you don’t have to face things alone.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. 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.

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When a Stranger Asked Me 'Is Your Other Kid Normal?'

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“Is your other kid normal?”

How would you feel if someone asked you that?

Before I let you know how I reacted though, I want to start by looking at the dictionary definition of “normal.”

According to The Oxford English Dictionary, the word “normal” means: conforming to a standard; usual, typical or expected.

In other words, this stranger was implying my son is not standard, usual or what was expected. He does not fit society’s stereotypical idea of a 7-year-old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love how he is different. I love that he does things in his own way, at his own time and that he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yogurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all “normal” things that 7-year-old boys do!

He has brown hair, hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my son and saw his differences. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child. Maybe I should be sad I have to support him so much at 7? Maybe I should be brokenhearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well, a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

But now, I see my son differently. I see him as beautiful. I see him as wonderful.
He is normal. His sister is normal, too.

Normal according to the dictionary is conforming to a standard. If you see the standard as “being human,” then there really is no such thing as not being normal. So do you want to know how I replied?

I simply smiled and said softly, “Yes. I am blessed with two amazing children. Thanks!”

Miriam's children. Her son makes a goofy face.
Miriam’s children

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 The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? 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.

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Why I’ll Never Say Our Version of Hard Is Worse Than Yours

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One thing that shocked me the most upon becoming a part of the autism community was the great divide and the tension that exists. You don’t have to go any further than the comments section on an autism blog to find the division and anger. I see the derisiveness in our support groups, in our special education classes and in our Internet discussions.

I see support groups separating into functioning levels, as parents with kids on opposite sides of the spectrum aren’t always able to relate to one another. Amongst parents with children on one end of the spectrum, there can be a constant one-upping. This constant bickering over whose worst days are worse; over which child has the most challenges. Are people really arguing about this or feeling slighted if their child isn’t “severe enough” to be considered on this end of the spectrum?

Well, in fact, we are. Maybe I should give you some context. How many times have you heard or read:

“At least your child talks.”

“Oh, he’s mainstreamed some of the day? So he’s just quirky, right?”

“If you don’t deal with aggression on a daily basis, you don’t know the autism I know.”

Sound more familiar now? There is nothing wrong with acknowledging that autism is a broad spectrum, and it affects everyone differently. But when we start belittling others’ struggles and day to day challenges, we start hurting our entire community.

I was reading comments on one of my published pieces the other day. One reader said something like, “The person who wrote this clearly has a high-functioning child. They don’t deal with self-harming or aggression or destruction.”

Except we do deal with self-harming and aggression. Every day. We do have our house torn apart and things broken mid-meltdown. The first thing I thought: How dare this person presume to know what we go through day-to-day based on one article, based on one day, one snapshot of our lives.

My second thought: Damn, I think I have said something like that before.

I remember a couple years ago arguing with a self-advocate and saying something to the effect of, “Well, if you are sitting there typing your thoughts, you have no idea what severe autism is like. Your opinions don’t apply to me and what my kid goes through.”

How dare I presume to know what someone else’s autism is like. That autistic adult could easily be my son in 20 years, possibly able to type his thoughts, but also having gone through years of therapy to get to that point. They could easily be someone who can type their thoughts but still can’t speak or someone who still struggles with so much anxiety they cannot leave their house.

I’m sure at some point we have all been on our side of this divide, and we cringe when the other side tells us we don’t have a right to feel the way we feel. When people unfollow my page because they see a video of my son talking and they assumed he was nonverbal like their child, it hurts. Especially as I go through his re-evaluation results this week and see that my beautiful 5-year-old got “poor” or “very poor” marks in almost every category. Don’t presume to know another family’s struggle.

When my friend tells me her son has attempted suicide again because he is so very aware of his differences and isolation, my heart breaks. And it breaks even more knowing that before I knew her, I judged that side of our divide. I thought “Are they really complaining their gifted child isn’t challenged enough in school and is having behavior issues? I would love to have that problem.”

My child may never live on his own, but maybe he will find his version of happy, and that will be enough. Your son may never say the words, “I love you,” but maybe his smile and his hugs are enough. My son may never stop having explosive moments, but maybe he will learn to get through them without hurting himself or his family. Your daughter may never have a lot of friends, but maybe she will find great satisfaction in what she does for a living.

There are going to be hard days, and although our hard may look different than yours, I will never discount your feelings or experiences because they are different than my own. We’re all in this together, and I believe if we spent a little more time building each other up rather than ripping the other down, our community could move mountains.

boys walking on grass
Mandy’s sons.

Follow this journey on From the Bowels of Motherhood.

The Mighty is asking the following: Write a love letter to another person with your disability, disease or mental illness. 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.

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