The Letter I Would Have Written for My Parents When I Was Still Nonverbal

Baby KerryDear Mom and Dad,

I know it’s breaking your heart to see me as I am now. Most of the kids we know are starting to talk while I’m just making sounds. I’m lashing out because I’m struggling. I can’t communicate my needs, and things are just not going the way I wish they would. I scream and fight with you every time you try and bathe me because I can’t stand the feeling of water. I cringe anytime I hear thunder, and I don’t like to be touched because of my sensory issues. Even now, as we make all the adorable videos of me dressed up as one of the best looking toddlers of all time, I know things aren’t easy, and we don’t know what my future has in store.

I want to tell you, though, to keep fighting for me and believing in me because without you both — my best advocates — I’m not going to be the person I am today. There’s hope, and you both play a huge part in that. Things are going to get better, and without you that wouldn’t be possible.  

At 2 and a half, I’m going to say my first words, and at 4 you’re going to find out from a doctor that I have something called autism. In 1992, it will be something you would have only heard from some of the leading experts in the field and from the 1988 movie “Rain Man.” The road now is going to be difficult, but we’re going to get through it together. 

Supports are going to be difficult to come by. The numbers of autism are 1 in 1000 right now and so many people still don’t understand. Life is going to be difficult. Challenges are coming. But here’s why you should fight through the challenges…

By fighting for me every day and helping me go through occupational, physical and speech therapy for the next 16 years, while giving me support at home and in school, I’m going to grow into an adult who is a national motivational speaker and gives talks about autism across the country.

Because if you fight for me right now and never give up, not only will I be that speaker but I’ll have the opportunity to write an Amazon Best Seller, consult for a major motion picture that makes 30 million dollars, and be someone who gives you love every single day. I will grow into an adult who embraces affection.


I hope for any parent who reads this letter — coming from a now 26-year-old adult on the autism spectrum — that you never give up on your loved ones. The autism spectrum is wide and everyone’s journey is going to be slightly different. Become an advocate because by doing what you’re doing now, you not only give hope to your loved ones but you give hope to the autism community. We’re learning more and more about autism every day and more and more answers are coming to help our community progress.

Most important, I hope you take this letter as a sign that all parents of children on the autism spectrum can make a difference. Some days are going to be more difficult than others, but just know that you’re never alone in this community. And if you ever need someone to talk to, I’m just one message away if you click on my Mighty author page.

A version of this blog originally appeared on


To the Trader Joe's Employee Who Noticed My Family in the Parking Lot

I was tired, hurried, frustrated and ready to just go home. My husband, John, was pushing our son, Mareto, in the cart as fast as he could to leave the store before the meltdown got worse. We were frantically trying to open up a cereal bar to stem the tears. Our daughter, Arsema, was strapped to my chest in the ergo carrier watching it all through wide eyes. Sweat beads were forming on my forehead, caused in part by my embarrassment but mostly from the heat and amount of energy I was exerting by running through Trader Joe’s with my 18 pound baby strapped to my chest and my toddler screaming behind me.

I sure didn’t feel like I was going to be in the running for any mom of the year awards. I felt like a hot mess. In fact, I was sincerely hoping no one was looking at us too closely… that somehow we were invisible to the people bustling around us. It was chaotic, exhausting and an unfortunately all-too-common experience for us.

Our family doesn’t exactly blend in with the wallpaper. Not only are we two white parents with a brown son and daughter (something that causes enough stares and questions all by itself), but our son has noticeable developmental delays and different behaviors because of autism, and our daughter has missing and webbed digits. In other words, when we all go out together, we stand out. Usually I don’t mind, and often I love it. My children are beautiful, and so is our story.

Sometimes though, on the days when we’re far from having it together, I do mind. Those days I just want to blend in with the crowd and hide far away from the curious stares. Some days I get tired of it all and just want to be a family — not the adoptive family, not the family with special needs children, not the unique family — just a family. This was one of those days.

I was close to tears as John took Mareto to put the cart away. I rushed through the doors with Arsema on my chest to get to the car as quickly as possible when a voice behind me slowed my steps.

“Ma’am!” she called out. I slowed, hoping and praying she wasn’t talking to me.

“Ma’am!” I stopped and turned to find a young woman rushing toward me. A bright smile covered her face, and I immediately noticed her beautiful black curls, just like the black curls snuggled on my chest, tickling my chin. Recognizing her shirt, I realized she worked there and assumed I must have dropped something. I looked at her, holding back my tears, waiting.

“I just wanted you to have this bouquet…” and I looked down to see the flowers in her hands. She quickly continued to explain…

“I was adopted as a baby, and it has been a wonderful thing. We need more families like yours.” I stared at her, stunned. Hadn’t she seen what a disaster we were in the store? Didn’t she see that we were barely able to keep it together? Didn’t she see what I felt were all my failures as a mom?

As she handed me the flowers I managed to choke out a thank you and tried to express that this meant the world to me. She patted my shoulder, told me my family was beautiful and walked back into the store.

My steps were much slower as I finally headed to the car with my arms full of flowers and tears that had spilled over onto my cheeks. On a day when I felt like we were the worst example of family… a day when I hoped no one noticed us… she did. But she didn’t see what I assumed everyone was seeing. She didn’t think what I assumed everyone was thinking. She saw beauty and love and hope and family. She thought we were wonderful and it made her smile.

family of four smiling

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I wish I had thought to get her name. I wish I could go back and tell her, two years later, what her gift continues to mean to me today. To the beautiful young woman in the parking lot of Trader Joe’s … thank you from the bottom of my heart. You are a treasure.

This post originally appeared on

This Is What My Son Told Santa About His Brother With Autism

Over the Christmas holiday we decided to enlist the help of one of our Christmas decorations to promote good behavior with our oldest son. It was an Elf-on-the-Shelf tactic, but we didn’t spring for one of those this year. Instead, we have a rustic snowman that holds two little blocks to countdown to Christmas.

It started out simple enough. Our oldest son was being a little crazy and not listening one day, and I told him he needed to behave or Santa would not bring him any presents. When we were kids, it was enough for our parents to say, “Santa sees everything you do, so be good!” That was not enough for Brennan, though. He asked inquisitively, “If I am here and Santa is at the North Pole, how will he know when I am being bad?”

Instead of taking the magical route, I went with the technological approach. Our children, after all, are pretty up to speed on the latest technology these days. So I informed him there was a webcam in the snowman’s head, and it would Skype a live video feed to Santa at the North Pole. This answer was sufficient for him, and for the most part we saw drastically improved behavior leading up to Christmas.

Our youngest son didn’t understand the concept of being good for an upcoming day. Everything for him is happening right now, and he can’t even really grasp the idea of tomorrow. Evan absolutely loved all of the Christmas decorations, but the concept was lost on him. He loved trying to take every single ornament off the tree and throwing the countdown snowman on the floor a hundred times a day.

This worried our oldest son… a lot. “Mom, Santa isn’t going to bring Evan any presents. He sees him throwing this snowman down over and over again. He’s going to be on the naughty list for sure!” I tried to explain to him that Evan doesn’t quite understand consequences yet and really doesn’t even know that throwing the snowman down is a bad thing; he’s just excited by all of the decorations and doesn’t quite know how to handle it. I assured him Santa would probably understand.

So this had become the normal conversation every time the snowman was tossed to the floor. Until one day our oldest instead said, “Oh, Evan, I know you don’t know why you do that, but Santa knows you have autism, so I hope you get presents anyways.”

Farmer 2013-11

He then took it upon himself to prop up the snowman and explain Evan’s situation to Santa. It was one of the sweetest big brother moments I’ve ever seen — almost like he was defending his little brother’s case. “Santa, Evan just has autism; he doesn’t always know what he does, and he does stuff before he thinks most of the time.” For a just turned 4-year-old, I thought this was a rather accurate analysis.

He doesn’t overcomplicate Evan’s issues, but he frequently has to overcome boundaries that autism presents to our entire family. He tries to play with Evan and wants to engage, but Evan will misinterpret his signals and thinks he’s trying to take the toys he’s holding. So Brennan’s prompting for play is often met with him getting hit by a dinosaur. It doesn’t stop him from trying though, and he rejoices in Evan’s successes right along with my husband and me.

The innocence behind his questions and comments about his brother’s autism will melt your heart, and they’ve taught me more than I could ever read in any book. The other day, Evan said a wonderful sentence and asked outright to watch a specific movie, even naming the characters. Brennan jumped up and down and exclaimed “Evan, you know their names, you know about the movie, you’re starting to not have autism anymore!”

He sees his brother growing and overcoming challenges, and he hopes it will go away so he can play with his brother, and his brother will always respond when he talks to him. It’s his heart’s biggest wish, and it comes up frequently. He knows his brother is different, and he’s OK with that, but he wishes it wasn’t so hard for him to understand and communicate.

He asked for Power Rangers for Christmas and made an extensive list of toys, just like every other kid. But a few days before Christmas he walked up to the snowman and said “All I really want for Christmas is for Santa to take my brother’s autism to Never Never Land so he will never have to deal with it again.”

I know he wishes it was different. He asked if his sister will have autism when she’s 3 or if she will be able to understand him and play with him. It moves me that no matter how much he gets ignored or chased away, he will always ask Evan to play with him. There breakthrough moments — that little boy lives for those moments. He tolerates screaming at night and usually just turns over and covers his head. He tolerates having to give up a toy he had first if his brother desperately wants it and cannot be consoled. He usually stays calm when his brother destroys a city he’s made out of blocks. He may not completely understand, but he gets it and has matured a lot because of it.

His little baby sister will get it too. For right now she loves to watch her brother run in circles or rock and sing. Her face lights up when he talks to her. They seem to have their own little special connection. Evan doesn’t really understand soft touch or that he’s bigger than she is. He’s working on it, though. More than once he’s said sweetly, “Sit on baby’s lap,” as he tries to sit on her while she’s sitting in her bouncer chair. We’ve obviously had to watch him closely, more like you would handle a 1-year-old with a new baby. But he’s learning and will try to kiss her and hold her hand. He’s even shared his beloved dinosaurs with her on a few occasions, but then of course quickly took them back, claiming they are too big for her.

Farmer 2014 005-60

I’m so grateful Evan has siblings who will always watch out for him. And with all of our moves I know the boys will always have a builtin best friend. I think his siblings probably understand him better than I ever will. Even though they may have to grow up a little faster to cope with the challenges our family faces, I know it’s building character and shaping them into individuals who will not only accept people’s differences but embrace them.

This post originally appeared on From the Bowels of Motherhood.

The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected]And remember, some gifts don’t come in packages.

When the Ride Attendant Did the Strangest Thing for My Child

We preach to our children be nice. Don’t call others names. Be kind. Be a friend. But how many of us actually practice what we preach? I know I’ve fallen short way too often.

The thought of being kind to others has been on my mind lately, not because of personal issues but because of a recent visit to the fair. Yes, I learned something from the county fair.

Every Saturday we go to lunch and do some form of an outing with Bob. For eight hours a day his life is governed by school and therapists and basically practicing life skills. So, on the weekend we like to relax and cut loose a little. We try to drag him out of his comfort zone (our home) and bring him into the “real world.”

This Saturday we made the trek to the county fair. I’m sure you know the type — basic ferris wheel, kiddie rides, games where you can win a fish or a stuffed animal, french fries and hot dogs and elephant ears, oh my!

I can’t lie. I was nervous. I didn’t know how it would go. I asked my Facebook family for prayers, good thoughts or even good juju. I was reaching.

We arrive at the fair. Bob sees letters — words — that excite him. “What does that say, Mommy?” he asks. I oblige and answer, holding his hand a little tighter as the music and the smells and the people seem to barrel towards us. The funny thing is, you never really even notice all these things until your life is touched with autism. Our senses are accosted daily and the fair, well let’s just say that’s a whole lot to take in — especially when you’re little and autistic.

We get to the ticket booth and the hubs proceeds to buy tickets. He looks at me and asks how many should I get? I don’t know — depends on if Bob can handle this or not. Oh, what the hell… get 50 tickets. This could work!

Bob gripped my hand tightly and said, “I wanna go home. I’m scared.”

I told him we would walk a little further and if he wanted to go home we would.

We didn’t have to leave. He loved it! He rode the roller coaster not once but three times. We rode the tilt-a-whirl. I thought I was going to vomit. He smiled the entire time. He even tried his hand at throwing ping pong balls into bowls to win a fish. He won not one but two fish.

We moved on to a motorcycle ride. Even though it was October and technically fall, it was still hot as hades in South Carolina. Evidently the South didn’t get the memo. While we were standing and waiting our turn, the ride attendant proceeded to complain about the heat. I tuned her out. My only concern was that Bob got on and off the ride safely. As Bob mounted the cycle, the attendant helped him and then she did the strangest thing. I felt like I was looking at something that wasn’t a reality… but it was. She proceeded to roll up my child’s sleeves.

Evidently, because she was hot, she assumed Bob was as well. I watched this woman. I watched this person proceed to do an act of kindness — just seamlessly giving some relief to a child. That one act, that simple thing she did, meant the world to me.

The fumbling of her fingers as she rolled his sleeves up, the kindness she bestowed upon my child, didn’t cost either of us a thing. It was what it was — an act of kindness, just a simple act of kindness.

I leave you with this. Try to do a simple act of kindness. I know I’m going to make a valiant effort. Because you never know when the one thing you do, that one act, will impact another person’s journey.


This post originally appeared on I’m Bob.

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grizzly bear

Moms of Children With Autism Should Be Called 'Big, Bad Mama Grizzly Bears'

I know now why moms of children with autism get the nickname “Big, Bad Mama Grizzly Bear.” Even before my daughter’s actual diagnosis, I fought and fought hard like a mama bear protecting her baby cub.

I remember the day we were “strongly urged to get her a diagnosis.”June, 2014. My daughter was 19 months old then. I got on the phone calling every pediatric neurologist in New Hampshire and Massachusetts. I was put on wait list after wait list.

My daughter’s pediatrician put in a “RUSH/STAT/ASAP” request on my daughter being seen… because early intervention (EI) is key, and my toddler was almost 2 years old. Timing was everything.

I finally got a call from a children’s hospital and was told, “We’re ready to schedule Zoey for her appointment with the neurologist.” I remember feeling elation, joy, excitement and thank God.

That all quickly diminished when I heard, “We’re booking appointments a year out.” I immediately burst into hysterics. I explained we don’t have a year, we need EI now… we can’t wait! She’ll be 3 and we won’t get the help soon enough.

The receptionist rudely said, “So do you want me to pull the referral?”

I was speechless, only sobs came out. I managed to utter, ” I don’t understand, her doctor put a RUSH/STAT/ASAP on the referral, I don’t understand,” as I’m sobbed and pled.

Not once did I hear an, “I’m sorry… I understand your fear.” No, I again heard, “So… do you want me to pull the referral?” I sobbed. “Yeah, I guess… I don’t know what to do… I can’t wait, she can’t wait… I guess I have to call somewhere else.” I hung up.

There’s no bigger hurt than trying to fight for your child and to be shut down.

Well… that’s where Mama Bear kicked in. I called the hospital back after I composed myself and I asked for a supervisor… I was going to be heard.

I got a department head on the phone. This was our conversation.

Me: I’m putting you on notice. The way that woman treated me was uncaring, without compassion, rude, and she made me feel like my child was nothing. I’m telling you right now, my child means something; she is something. For a hospital that prides itself on the care of children, you failed when it came to mine. I’m putting you on notice. I will go on every single autism blog and website, and I will tell them and the autism community that you do not care about children with autism.

Department Head: I’m so sorry you were treated that way… your child means something to me. Do I have your permission to log a formal complaint?”

I said yes. I finished my day with no hopes of anything, just the satisfaction that I stuck up and was my child’s voice.

The next day I got a phone call from the hospital. We had an appointment and her diagnosis 17 days later.

Don’t ever give up. Find your inner Grizzly… be your child’s advocate and his or her voice. This is why I’m proud to say I’m a Big, Bad Mama Grizzly Bear!

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Follow this journey on Melissa’s Facebook page.

The Hardest Part of Autism

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” Fred Rogers

Last year a friend asked me if it was hard and how I manage and if I ever just want to lose it. “It” being this whole raising a child with autism thing. Of course it’s hard and of course there are evenings I collapse on the couch or cry in the bathroom. But isn’t that true for all mothers? How do I manage? About the same as all other moms, I guess. I drink coffee every morning and hide chocolate in the sock drawer. But then she asked another question…

What’s the hardest part?” And I didn’t even have to think about it. Other people. When you’re dealing with an invisible special need, strangers don’t know about it. As much as I sometimes want to, we don’t pin a sign to Mareto’s shirt explaining his autism. So other people, particularly strangers, give us a lot of attention in the form of staring, dirty looks, snide under-the-breath comments and just overall judgment. I can feel it in the store when Mareto’s getting upset and I have to hide in an empty isle to calm him down. Or when he can’t sit at a table in a restaurant. Or when he blurts out, “Watch out for diesel ten!” when someone says hello.

author's son smiles and covers mouth outside on a swing

But even the people who aren’t strangers can be hard. It’s not intentional, but unless they’ve had a lot of experience with autism, most people are largely uninformed. I get it, because up until two years ago so were we! So when Mareto licks the wall, or laughs at inappropriate times, or sniffs random items it can be awkward. The look of shock can sting, and I remember again this isn’t everyone’s normal.

These are all my issues, though. Because Mareto is unaware of these reactions, and most of the time they aren’t even directed at him. They’re directed at me. One evening my husband, John, looked at me and said, “I feel like people are thinking two things when we’re out as a family: your kid is bad and you’re bad parents.” That’s how it feels sometimes. It feels like people think we’re lazy or I’m not doing my job well and if I just tried harder he would behave differently. I felt so guilty when I realized that one of the reasons I was so excited about my other child, Arsema, being potty trained was that people might now see that we actually are capable of potty training and it isn’t laziness that’s keeping Mareto in diapers.

But do you know what’s even worse? When you take your kids to the playground and they’re having a blast. Your little boy notices a group of older children and runs to play near them. He bends down to pick up a piece of bark and his shirt rides up exposing the top of his diaper above his pants. And all the little kids start laughing and pointing and saying, “Look! That boy is wearing a diaper!”  Or when the 3-year-old looks at you over gingerbread houses and asks why your precious, funny and brilliant little boy is so dumb. Or when you realize he’s being physically bullied because he hasn’t learned the skill of tattling yet. These are the things that make me sick to my stomach. That moment you realize people are going to stop sneering at you and start sneering at your child hurts deep down in a way that takes the breath out of your lungs.

Now that Mareto is growing older, the differences are more apparent. They can’t be waved away or explained as typical toddler behavior. It’s a little more noticeable when a child the size of a 6-year-old isn’t potty trained. It’s a little harder to protect him from the bullies of the world. And that is now the hardest thing about autism –  my inability to shield him forever from judgment, ridicule and mean children and adults.

And the thing that makes it even more mind-boggling is that he is the sweetest boy you could ever hope to meet. He cares deeply about other people. He “rescues” his sister from nap time. He comforts crying children. He loves animals. He is friendly and kind and has fun interests. Yes, he has some hurdles in life that other people don’t have. But he also has a lot of awesomeness that other people don’t have. It comes to him naturally.

son and daughter playing outside

Mareto looking at the cat on the author's deck outside

So are the endless sleepless nights rough? Yes. Changing a 50 lb boy’s diaper isn’t my favorite. Getting Congress to actually accomplish something would be easier than getting my son to move beyond his three foods. But those things don’t matter much. Those would be the hard parts if we lived in a world where I knew my son was unquestioningly accepted and not just accepted but celebrated for who he is. If we lived in a world where people didn’t pass judgment so easily and were quick to love all people regardless and because of their differences and taught their children to do the same… then the hardest parts of autism would be much different. But we don’t live in that world. And as much as I want to keep him close by my side and never leaving the safety of our home, I know I can’t. He has far too much to offer (and teach) the world for me to do that. He has a joy and innocence and compassion and love and a curiosity that is infectious. The world needs him and more people like him.

mareto smiling

This post originally appeared on

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