How Special Needs Parenting Is Better Than Sea Monkeys

Like so many are, this is a story about love. It’s also about worry, doubt, confusion, acceptance, tiny and gigantic miracles, friendship and family, joy, celebrations and life. Oh, and sea monkeys.

Mostly though, it’s about love.

Five years ago, while the country headed home from “oooh”-ing and “ahhh”-ing over Fourth of July fireworks shows, my son, Tucker, was born. I spent hours marveling at how there was no way that his very small ittybitty, teenyweenie perfect little face could not be a single bit more perfect. I knew that nobody had ever loved anybody else in all of the history of time as much as I loved him. Except, you know, the people who have and do.

I had a baby. One that I never ever thought was possible. One that I was scared to hope for but dared to hope for, anyway.

I said, “Thank you.” I said, “Please.” I said everything and felt everything but mostly was like, “WOW, LOOK WHAT I DID!” and was unbelievably thankful because 40 years is a lot of years to wait to be a mom.

Time passed, a kazillion baby books were consulted and early milestones were met.

We celebrated. We worried. We doted, and we played. We lived.

We lived while the whispers of worry and doubt over unmet milestones got louder, and the unmet milestones got bigger. Or at least more obvious.

We lived while it was finally time to seek doctors and evaluations and teachers and early intervention, and we lived and died — but mostly lived — when we heard The Words.

The Words that Tucker was and is and maybe-probably-always-will-be developmentally delayed. We lived through The Words.

Autism Spectrum Disorder. Severe speech and language delays. Atypical development. Typical in some areas. Atypical in so many others. Which, in itself, is atypical.

Even though it doesn’t actually happen that people become special needs families overnight, it feels that way, because until the doctor or the teacher or the evaluator, or all of them — all at once — say it out loud, you think your kid and your family is just like all kids and all families.

Then, you feel scared.

Maybe a little bit like you totally screwed parenting up and maybe this whole thing is your fault because if you’d just talked to him more, or made him go to daycare to socialize, or maybe if you’d let him watch less “Caillou” when you selfishly took a shower — maybe — he really would be the imagined just-like-all-the-rest-of-the-kids kids.

But, probably not.

And everything is scary and terrifying all over again, just like that first night in the hospital when you realized that maybe being a parent is just as terrifying as it is amazing.

Everything is scary and hard and worry-filled and a little bit dark.

Until it’s not.

One day, you wake up and realize that life looks exactly as beautiful and messy and disorganized as it did before you heard the words. The sun still shines, the clouds still cloud and the laundry still sits there, undone. Your kid is still the best boy ever.

You meet people. Therapists and other parents and other kids and, while they have lots of similarities to each other, they have lots of similarities to everybody else in the whole wide world, too.

The Big It gets less scary. And mostly, hardly-at-all even sad any longer, when you know that your kid won’t learn to ride a bike or a scooter until later, or possibly never, and that’s not what matters anyway, because he’s still totally perfect. As perfect as all of us are.

Which is not that perfect. But it’s magic and happy and a trusting little boy’s hand gripping your own, full of confidence that you’ll lead him through the parking lot safely. And maybe even through life safely.

Being a special needs mom means giving up dreams. But it also means that the new ones are just as awesome.

It’s awesome, as in, please don’t feel sorry for us.

In fact, I’d even say that being a special needs mom is better than Sea Monkeys.

Because Sea Monkeys sound like the coolest thing, ever. I mean adorable little monkeys swimming around a fish bowl?! Playing with each other and playing with you, and smiling at you and having their cute little monkey faces have adorable, unique little features so you can tell them apart and know that the one named Benito will never be mistaken for Carter, because Benito has that little tuft of Sea Monkey hair!

The stupid Sea Monkeys are not cool at all.

Nor are they monkey-like in a single, solitary way. They are so un-monkey like, in fact, that not only do they not have monkey hair, or arms or little monkey hands with which to wave to you from their sea in your room, they have no faces.

And you can’t tell them apart at all and obviously they are the worst pets ever invented.

Being a special needs mom is the opposite of Sea Monkeys because when you think about being a special needs mom before being one, it sounds like it will be hard and sucky and hard and judgy and hard and maybe you might even think that if your kid can’t do the stuff you had always dreamed about doing with him, that it wouldn’t be fun. You think it might be as faceless (because, until now, it has been, as the Sea Monkeys really are).

Except that it’s not sucky — it’s full of faces and expressions and love, and it is fun.

It’s magical and wonderful and amazing and beautiful and even better than Sea Monkeys would be if they were actually little Benito and Carter with their funny little monkey faces, being the friends you’d hoped for.

It’s better than you’d even think about dreaming for.

One day, you start planning a beach vacation. Because the little baby with the ittybitty, teenyweenie perfect little face that could not be a single bit more perfect is turning 5.

Whoever said that the moments are boring and that the years are too short was right.

I love the moments, though. Because these moments, right here, are lifetimes. Full of wonder, light, and are, my friends, the faces of 5.


We have had pool time and beach time,and water park time and flying.  We had boardwalk roller coaster rides and fearlessness (Tucker’s, not mine).


We had swinging, high up into the air.


We’ve had heart-stopping ocean moments, when Tucker was twisted and turned in the post-hurricane waters that left me shaking and crying and him asking to do it again.

We have a funny, crazy, amazing, shy, crawling-on-his-knees-to-avoid-his-best-friend’s-grandparent’s-faces, daredevil boy.

We are celebrating special needs, because we are celebrating this kid.


We are celebrating Five. Saturday night, one night too late due to the hurricane, we celebrated with a fireworks show on the beach. I sat there, my legs resting in the cool night’s sand, with my not-so-little-but-still-little little boy in my lap, snuggled against the ocean breeze, “oooh”-ing and “aaah”-ing to the fireworks that we missed five years ago for his birth, and life was perfect.

Firework2(pp_w307_h338) We were young and old and everything in between.

Connected to all of the betweens and all of the people, everywhere.

We were just the regular family, and we were the best family. We were the best and the youngest and the oldest and the most complete.

And when Tucker asked me what the fireworks said, because maybe the patterns looked like words, or maybe, because he, too, felt the importance of the moment and wanted to be sure he wasn’t missing the message. I answered, “They say, ‘Happy Birthday, America. Happy Birthday, Tucker. Happy Birthday, This Life.’”

He smiled.

And I knew, again, that this is exactly, perfectly, my perfect, perfect boy.

My perfect, perfect, messy, messed up life.

As the firework’s peak ended, and people began to get up and leave, we sat, sighed and gave thanks.

Tucker looked at me and said “Hm. I say?”

“Yes, Baby? What you say?”

And he said, “I say, thank you fireworks.”

Yes. Thank you, fireworks. Thank you, life.


This post originally appeared on Finding Ninee.

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The Real Battle Special Needs Families Face

“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience. Those families are in an ongoing battle.”  

The above is a version of a comment I’ve read countless times over the years.

Aside from the curious conflation of the first part of the sentence discussing autistic people’s sense of themselves, to the last part, which discusses the family’s point of view, as though the “low functioning” individual is incapable of having a point of view, there is no point arguing with anyone about their lived experience. However, do not make your experience mine. This is NOT my experience of my child. This is NOT my family’s experience. This is not the experience of many, many families I know. And do not assume this is my daughter’s experience either. Just because this is the way you view your child or sibling or relative or the person you know, does not mean that is their experience of the world or their family member’s experience.

I do not assume that because I choose to celebrate my daughter — every family and every autistic person will agree or feel the same. Nothing is as simple as any one-word descriptor. The ongoing battle I find myself in is with the inaccurate information about autism and autistic people. The ongoing battle is not my daughter’s neurology, it’s the misperceptions people have that they then apply to my daughter. The ongoing battle is not about her at all, it’s about functioning labels, what people continue to say and believe autism means, how people view disability, the stigma attached and how people fear, reject and punish what they do not understand.

That quote? That is exactly what I am battling – the idea that because someone cannot use spoken language, they do not have an experience of the world, the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy and therefore excluded. Exclusion is the battle. Non-acceptance is the battle. Intolerance is the battle. Hatred is the battle. Prejudice is the battle. Discrimination is the battle. Misinformation, inequality, superiority, arrogance, ignorance and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon — that’s the battle.

This post originally appeared on Emma’s Hope Book.


The Land Where Empathy and Wonder Rule and Our Differences Don't

I’d like to live in The Land of Empathy and Wonder.

I’d like to live in a land where my son, Tucker, is one of many, and the many have a variety of differences. None of those differences are considered afflictions, disabilities, special needs or delays. In this land, everybody’s quirks and uniquenesses and differences are celebrated. They’re not noticed because they are not important.

The only thing important in my imagined land is a person’s heart. And his empathy. And his ability to find wonder — to find joy in blowing bubbles on a breezy spring day rather than worrying about a job, a disease, a bill, a blog…

A place where every resident is able to abandon her phone to follow her son on his quest to best imitate a butterfly. To experience Wonder. To celebrate it.


I’d like to live in a land where skin color matters as much as the color of a person’s underpants. Where couples that fall in love ARE a family without having to lobby for the right to be legally recognized as one by a government. Where a person’s actions toward others is noticed and the cost of her handbag is not.

I’d like to live in a world where I can take my son to the playground and the fact that he’s playing amazingly well with an unknown younger friend is what’s noticed rather than the fact that his new friend is miles above him in language. In knowing how to play. In, well, everything.

I’d like for all of us, including yours truly, to simply “Aaaahhh” at the joy on two boy’s faces bonding over finding an abandoned ball.

To be.

To be.  Ahh… can you imagine?

I can.

I see that joy and wonder in my little boy’s face every single day. He sees magic.

I want to get back to seeing the magic.

This land of mine would allow me to see Tucker’s recent school photo and not analyze it. It would allow me to remain in the belly-laugh moment my husband and I shared when we first saw it and thought, “Oh my… he looks so mischievous! So grown up! And so funny!” Instead, I returned to it later and wondered whether this photo looks like autism.  Whether Tucker’s beautiful eyes all squinted up as if he’s hiding something meant instead that he was at his “I need a break” point. That he may have been scared or intimidated or overwhelmed and didn’t have the words to say so.

I’d like to live in the land where empathy and wonder rule.

Where our differences don’t.

The best part? This land exists.

It exists right now in some of you, if only ideally. We, my friends, have the power to transform our worlds, our ideal places and our homes into The Land of Empathy and Wonder.

It starts with you. With me. With our children. With how we choose to spend the next five minutes. With being able, tomorrow when we’re stressed out and overwhelmed and busy and annoyed, to be able to take a moment to NOT look away. To try and make eye contact with the boy who makes you uncomfortable. To say hi. To give his tired mom a smile.

To give her a smile that conveys the message that we’re all in this together.

And that there is empathy and wonder.  Everywhere.


This post originally appeared on Finding Ninee

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Man With Autism Performs Beautiful Tribute to Paul McCartney

In 2011, when Michael Korins watched James Durbin, a singer with Asperger syndrome, compete on American Idol, he knew he wanted to take his music to the next level. Autism wouldn’t stop him from sharing what he loved with the world.

The 20-year-old began singing when he was 3 and started performing when he was 7. Today, he’s made somewhat of a name for himself on YouTube. Korins sings inspirational songs in hopes of changing the way people view autism.

“When someone watches a video of Michael’s, I want them to realize that the label of autism does not define a person who has autism,” his dad, Dan, told The Mighty in an email. “Mike and I also want others with autism to be inspired to be the best they can be. Just as importantly, we want to give hope to parents of children who have recently been diagnosed with autism.”

In the video below, Korins performs Paul McCartney’s “My Love” at a Life’s Connections Through Music concert. Definitely take a look:

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The Day I Laughed With a Stock Boy Named Jacob

Recently, I was in a big box retailer picking up an online order at customer service. After the desk clerk assisted me and called for the stock boy, she began talking with two other employees less than two feet away from me. It was hard not to hear them as they gossiped and made fun of other employees. When the stock boy arrived, he came right up to me. He was tall, quite thin, messy hair, mismatched clothes – but poised and professional. He said to me, loudly and nearly scripted, “Ma’am, I am here to serve you! Is this order I’ll be locating yours?” I said it was, to which he replied, “Ok, ma’am, you got it. I’ll be back quick as a lick!” and he did a military style about-face move and headed off to retrieve my order.

I smiled as he walked away, unsure if he was just being silly to get a reaction or if he was being the best he knew how to be. But I smiled because he made me smile, no matter the reason. No sooner did he leave the desk, the clerk exclaimed “Ugh, that kid is so retarded!” as her two coworkers nodded and giggled in agreement. Her statement physically knocked me backwards and I noticeably gasped for air. They all turned to me and I could feel my face start to burn red. My mind was racing in the seconds following her statement. I wanted so badly to smack her right across the face but I knew that wouldn’t make her understand my shock.

I managed to say to her, through gritted teeth, “Excuse me, what did you just say?” Her two friends quickly scattered. I took a step closer and repeated myself, “What, exactly, did you just say?” She rolled her eyes and stepped back before saying, “Um, I said that kid was retarded. Why, do you know him?”

I gasped again.

“No, I don’t know him. Does it matter? You don’t know me! I could be his mother, his sister, his aunt, his friend. Do you know him?”

“Well, he works here so –“

“What’s his name? Do you know his name? Do you know anything about him?”

“Well, um… No.”

“I do and I’ve only been here for ten minutes! His name is Jacob. Do you know how I know that? He has a name tag that says ‘Jacob!’ What is your name?”

“I’m Carol.”

“Carol, what gives you the right to call Jacob that awful word? You don’t even know his name! How dare you. How dare you?

“Well, I didn’t say it to you! Or about someone you know!”

Again, I was physically knocked backwards by her ignorance. What Carol didn’t know is that she was talking about someone I knew. She didn’t know the struggles my daughter had gone through over the last 14 months. The therapy sessions, the speech classes, the meltdowns, the doctors, the pain, the confusion. She doesn’t know.

“Carol, I need to speak to your manager. Immediately.”

I began shaking and, once again, considered a physical altercation. She then pulled back her sweater to reveal her name tag: Carol – Customer Service Manager. I may have blacked out at this point as I said to her, “You cannot be serious. You are the manager? You are the one that is supposed to lead that young boy? And you are the one using that ugly word in front of a customer? No. Absolutely not. Give me the store manager’s number, district manager – give me the CEO’s information! I don’t care who – just so long as it’s not you.”

She quickly started to apologize. “Ma’am I am extremely sorry. There is no need to make any phone calls. It won’t happen again.”

“You know what, Carol? Jacob is coming back now. I think we’re going to chat with him. And I think you owe him an apology.”

Before she could leave or say no, Jacob arrived with my item, put it right in front of me and saluted as he said, “Ma’am, here it is. Lickety split, just like I promised!” “Thank you, Jacob, thank you very much.”

His face lit up in that instant. He towered over me but he seemed so small and innocent as he looked down at the floor and muttered, “You know my name? Wow.”

I couldn’t help but choke back tears. I wondered if anyone in this wretched store had ever addressed him beyond calling for a stock boy. I turned to Carol who was pale as a ghost, and I asked Jacob if he knew her name. He quickly replied, “Yes, yes I do. That is Carol the manager. She is the boss of all of the people,” as he waved his arm in a dramatic arc. I asked him another question but still glared at Carol, “Jacob, is she nice to you?” He didn’t hesitate in his reply, “No, ma’am. She is not a very friendly Carol.” She quickly hung her head and sighed.

I continued, “Carol, Jacob doesn’t think you’re very friendly. What do you think about that?” I could see her face turning red and her eyes welling up with tears; I wasn’t sure if they were tears of remorse or embarrassment, but I didn’t care. She softly said, “Jacob, I’m so sorry I haven’t been friendly. I will try harder.” Jacob’s eyes bulged out of his head and a smile that seemed too big for his face radiated the room. Before he could say anything, I said, “Thank you, Carol. Good evening. Now, Jacob, are you ready to help me to my car?” He switched right back into professional mode and said, “Abso-tutey-lutely!”

We walked into the parking lot silently. He seemed reflective and proud. When we got to my car, I asked if I could help him lift the item into the backseat but he insisted he do it himself. After, I said, “Whoa, it fits perfectly! Thank you!” He stood next to me and dramatically said, “Like a glove!” I giggled because I knew the movie he was quoting. He noticed and said, “Do you know that’s from a movie?”

“I do! And I even know what movie it is!”

“Ok, ma’am, I’ll give you a hint: Jim Carey, 1994, Name that movie.”

“’Ace Ventura!’”

“That was amazing.”

“I love that movie, Jacob!” And I laughed with him. With him.

“Ma’am, you’re friendly. Can I tell you a secret?”

“Sure, Jacob. What is it?”

He took a step closer to me then and said, “I have autism. But I can work and learn and stuff! I just like to be goofy because it makes people happy. Then they will have a reason to laugh.”

I have no idea how I managed not to sob right there in front of him. I managed to say, “You’re awesome, Jacob. You. Are. Awesome! Can I have a high five?”

He stretched his arm high above his head. He smirked and said, “Jump! You can do it!” I laughed and I tried to reach but came nowhere close. He brought his hand back down to my level and said, “My mom said it’s OK to be different because that makes me special. But sometimes, I like to be normal. Let’s just do a normal high five, ma’am.”

So we did. Then he did his about-face move again and off he went, back into the store.

And he never looked back.

This post originally appeared on Mommy Needs a Martini.

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.

Mom Thanks Notre Dame Football Players for Helping Her Son

So often we hear about fallen athletes — football stars who fail to exhibit even the most basic skills of humanity, individuals who consistently put themselves before anyone else, role model, who were once held up on a pillar, fall in a fiery spectacle of disgrace. What we should be be hearing about are the athletes who put others before themselves — football players who think beyond the field and recognize the power that their position in life has on those that struggle. As a society we should be shining a light on teams and coaches who push their players to do good. Teams that provide their players an opportunity to reach out into their own communities to establish relationships with kids that look up to them.

This past week I had an opportunity to meet the angels of Notre Dame football. The men that play under the Golden Dome are more than just superb athletes. Football is a way of life in South Bend, Ind., and the players are idolized by many local kids. Notre Dame has shown their strength and abilities on the field time and again and have demonstrated that they have what it takes to be successful collegiately and professionally. But that is not what impresses me about this team and school.

My son is 10 years old. He loves history and can tell you even the most remote fact about Ancient Egypt, regardless if you want to know it. He struggles in school and has attended more schools in his short life than an adult does in their entire life. He has problems connecting with kids his age and often this leaves him shy and discouraged. His heart is the same color of the Notre Dame dome – Gold.

He has attended the Notre Dame football camp for three summers now. It is a fantastic program that the team runs for three half days in June. The players and coaches run the camp. They shout words of encouragement, they bolster the kids’ self esteem, they high five the kids when they catch the ball or get a tackle. It is an amazing camp that hosts more than 600 children every year. Most of the kids are excited to be there — they are outgoing, they seek out the players to talk and they have no qualms asking for an autograph. Most of the kids joke with their idols and are in awe that they are working out and learning next to a top collegiate athlete. Most of the kids smile and want to soak up every second.

But not my kid.

He keeps his head down. He barely talks to the kids in his group. He moves from one drill to another as if he is doing a death march. He wants to be at the camp — we would never force him to go — but he struggles with the pace and the loudness of the horns, the interaction with the players and kids his own age.

Until this year.

The week before camp, two Notre Dame players took time from their own lives to come and have dinner at our house to meet our son. They talked to him, threw a ball with him and joked with him. I haven’t seen him smile this much in a very long time. He held his head high when he came out and asked the gentlemen if they would like to see his room. He looked them in the eyes when he politely asked them, “Um, excuse me would you like to throw the ball with me?” He laughed and giggled when they missed a throw and wasn’t embarrassed when he did too.

Jake ND1 (1)

The same two players told their coach about my son and on the first morning of camp that coach came up and introduced himself. He took the time to make my child feel comfortable. A simple gesture that went so far, he could never really understand. My son went to camp this year and for the first time ever he laughed with the other kids. I watched him talk to the players, and he made it his quest to get every one of their signatures. I watched the players high five my guy, and I saw happiness reflected in his face. I saw pride and excitement.

Notre Dame Football players are a group of gentlemen that have left me grateful to be a part of this community. They have gone out of their way to make this camp successful for my son, for no reason other than the fact that they are an amazing team. Regardless of what you want to say about some athletes, I have to say that Notre Dame are truly golden both on and off the field.

Jake Smiling ND (1)

This post originally appeared on Herzig’s personal blog.

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