At 15, my son, Alex, and his twin brother, Jamie, began to run in mainstream races and marathons with the help of dedicated guides from Achilles International and the Rolling Thunder Club. Passionate about running in their own separate ways, Alex, the fast one, races with the elites. Jamie, the slower one, runs at a leisurely pace listening to his iPod, with his dad or me. So when we plan a family vacation, our choice has two prerequisites: a place to run and a bike.

Alex has a coach and several elite runners who run races with him. But on vacations, I blissfully ride my bike next to him, where I can watch him glow in the rhythm of his most comfortable “forever pace” of a 7-minute mile.

Vacationing in Virginia Beach offers a three-mile boardwalk, with a separate bike path for rollerblading, biking or surrey rentals. Jamie and Dad start out first. I hop on my bike as Alex watches every move I make; he’s ready to go. As he starts his run, I watch in amazement as the transformation occurs. My profoundly autistic son with severe anxiety changes into someone with such inner peace. He’s in a total state of focus, transcending the limits of his abilities as he flies by rollerbladers, bikers, runners and walkers, with little concern about these obstacles in his path. I peddle with every ounce of strength to keep up, barely able to politely yell out to those in our way, “Runner coming through! Passing on your left!” He will slow down when instructed, but we keep this fast pace because I know it’s what makes him the happiest. The sparkle in his eyes and his beautiful smile —this is my high for the day.

When we reached the end of the boardwalk we stop to drink and sit down on a bench. Sitting close together, I rub his back and wipe his face. As I take out my phone to take some pictures of him, he stands up, eagerly poses and smiles. Minutes later he begins to wave his arms and vocalize unintelligibly, unable to communicate what he wants. A wave of panic settles over me. I know he’s ready to run again.

As I offer him another drink, I notice a woman staring at Alex. I stare back, waiting for her to look at me. I’m ready to defend him, defend autism — as I have for years — and wait for any disparaging remark she may utter. Instead she comes over to me and asks if I would like her to take our picture together. She’d been riding behind us the entire stretch of the boardwalk and was watching Alex run. She says she was in awe of his running ability, and after observing us together, felt compelled to let me know how inspired she was. Minutes later, Jamie and his dad run over to us, having just completed the first lap of the boardwalk run. The woman then offers to take a family photo; one for us, and one for her, to remember our family and this day.



Thankful for this moment in time, I realized how powerful these chance encounters are. They help create an awareness of the many facets of autism and how people view individuals and their families living with autism. Neither Alex nor Jamie has any idea how they impacted the life of this stranger. But the imprint they left was one small way of saying, “Thank you for appreciating me”.

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TEDTalks often challenge us. To think differently. To learn. To be better people. To recognize a problem that needs solving. We’ve seen a handful of talks that do all of the above. But we’ve deemed the five TEDTalks below as particularly Mighty. So if you have some time today, challenge yourself.

1. Stella Young, I’m Not Your Inspiration, Thank You Very Much 

Young, who passed away December 8, 2014, tells it like it is in the powerful TEDTalk below. Listen to her brilliantly debunk the lie we’ve all been told about disability.

I am not here to inspire you,” she bluntly says. “I am here to tell you that we have been lied to about disability. Yeah, we’ve been sold the lie that disability is a Bad Thing, capital B, capital T. It’s a bad thing, and to live with a disability makes you exceptional. It’s not a bad thing, and it doesn’t make you exceptional.”

2. Caroline Casey, Looking Past Limits

Casey has ocular albinism and spent most of her life fighting against her visual impairment. But through a personal journey, she learned how to reshape her worldview. Her self-acceptance led her to found the nonprofit, Kanchi, which raises awareness about disabilities in the workplace.

“Disability is like the elephant in the room,” Casey explains below. “And I wanted to make you see it in a positive way — no charity, no pity.”

3. Rosie King, How Autism Freed Me to be Myself

“All in all, I wouldn’t trade my autism and my imagination for the world,” King says in the TEDTalk below.

This incredible woman goes on to say how autism shapes her life. She invites others to embrace their differences. King is an activist for inclusion and enthusiastically shares her goal of creating a more tolerant world for people with disabilities.

4. Aimee Mullins, The Opportunity in Adversity 

I had never once in my life looked up the word ‘disabled’ to see what I’d find,” Mullins says in her talk below. This Para-Olympic athlete goes on to explain why she refuses to be defined by her disability. Not only does she make the best of her situation, Mullins uses her disability as motivation to surpass her goals.

5. Sue Austin, Deep sea diving…in a wheelchair

Austin discusses her adventures in deep sea wheelchair diving and explains how these experiences prompted her to see the world — above and below sea level — through new eyes. Austin refuses to be defined by others’ opinions.

I was seeing myself not from my perspective but vividly and continuously from the perspective of other people’s responses to me,” she says in her talk below. “As a result, I knew I needed to make my own stories about this experience, new narratives to reclaim my identity.” 

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Late last year The Mighty sent a call out for submissions on things about our life we’re thankful for. For me, one of those things had always been Autism Speaks. The people there gave me my first full-time job out of college and have been a complete delight to work with since I started volunteering with them in 2007. In honor of Autism Speaks turning 10 years old today, I wanted to share why I will forever be grateful for this amazing group of individuals.

10. Walk Now for Autism Speaks

The first time I ever heard of Autism Speaks was during its Walk Now for Autism Speaks event. I needed 10 hours of community service, and I’d just become an autism advocate and wanted to get involved. This was one of the first times I learned about how wide our autism community actually is.

9. My Mentees

When I was growing up, I always wished I had a role model to look up to who was on the autism spectrum. Because of my advocacy work and blogs I’ve written at Autism Speaks, I’ve had so many families reach out to me asking for me to help their loved ones on the spectrum. For example, from 2010 to 2012, I had more than 1,000 families reach out to me when I was a bi-weekly blog contributor. Helping so many of these families have been wonderful beyond words.

8. Our Autism Response Team

As an advocate, I often get asked many questions that I don’t necessarily know the answer to. Thanks to Autism Speaks’ Autism Response Team, I always have a place to send individuals to when there’s a question that may be out of my reach. The Response Team helped more than 4,700 people alone last year. They can be contacted at [email protected]

7. iPad Programs

I love technology and know how it can help an individual with autism today progress. In 2014, Autism Speaks gave out more than 1,200 iPads, and it means the world to me to see people in my local communities receiving these grants. 

6. Autism-Friendly Santa Visits

This Christmas season I had one of the best days of my life when I got to be an autism-friendly Santa at Santa’s Elf Factory in New Jersey for more than 70 families of individuals impacted by autism. Thanks to Autism Speaks’ partnership with Simon Mall, we made this a possibility.

5. Light It Up Blue- Autism Awareness Day

When I was in college, one of the first keynote speeches I ever gave was in the Jersey City municipal council chambers to spread awareness of World Autism Awareness Day and Light It Up Blue (LIUB). I shared my story of living with autism. It was recorded by a local TV station that aired it for all my friends and families and later let me post the clip on YouTube. My parents would later send that video to the National Speakers Association which, after watching it, decided to give me a partial scholarship for graduate school to become a national motivational speaker. 

Without the LIUB imitative that started through Autism Speaks six years ago, this video may never have existed, and my life may be completely different because of it.

4. Autism insurance reform

When I was growing up, my parents paid out-of-pocket for my services. With Autism Speaks Autism Votes initiative, we’re making sure our families are kept in the conversation from a global and political level.  Hopefully this leads to insurance reform in their individual states.

3. Helping find individuals with autism who wander

Currently in our community, around 50 percent of individuals with autism wander from a safe environment. Because of groups like Autism Speaks, we’re able to get the word out on a national scale to our community to spread the word about missing individuals and make sure they’re found as soon as possible. 

2. Giving me a 2nd family

Over my past eight years as a volunteer and an Autism Speaks employee, I’ve met some of the most amazing people I’ve ever had the chance to be associated with. From my NJ Walk family to my co-workers, each one of them, much like any individual with autism you meet, has had his or her own unique story. Listening to those stories has made me a better advocate. 

1. Helping me find my voice.

Finally, I’m grateful to Autism Speaks because they helped me find my voice in our autism community. When I first came out about having autism, I was scared because I didn’t know how my peers were going to react. I’ve come a long way since that nervous public speaking speech eight years ago, and it’s because of the work and knowledge I’ve been able to gain from this incredible organization. They’ve given me the best from both worlds: working in a field that I went to school for and allowing me to help thousands of families of those who have autism. 

I’ll always be grateful for them, and I’m excited to see what’s in store for Autism Speaks while they continue to cause a change for the individuals around the world who have autism.


10 Year Image

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It’s amazing. Those days, weeks or months where you just feel like you are in a terrible slump… and then something beautiful happens to open your eyes to life’s idiosyncrasies. It makes you remember why it is you do what you do and what (or who) you do it for.

That happened today to me. I was rushing my son, Timothy, out the door to his marathon IBI session after school, and his hat’s brim poked me in the eye. It didn’t hurt, but reflex made me remark “ouch.” He stopped, and his eyes opened wide with concern. “Oh no, Mommy OK?” he asked as he brushed his fingers across my forehead over and over, searching my eyes for reassurance.

He felt remorse. Concern. Worry for someone else. My Timothy. This was the first time I’ve seen him show real, valid concern for me. Despite the hundreds, perhaps thousands of times he’s struck, kicked, scratched or head-butted me without batting an eye; he felt remorse this time. I wasn’t sure if he could feel. This moment meant more to me than words can say. It’s everything. It proves his mind is as beautiful as I always thought it was. It proves that even though the days are hard and sometimes I feel like giving up, I was meant for this, to be his mother.

The details aren’t important. What’s important is that he reached out through the invisible force field of autism and touched me. You see, sometimes I forget he’s a person and see him more as autism. It’s not right, and I don’t want you to think I condone it. But if I’m going to be honest here, as I swore I would be from the beginning, then there it is. Sometimes I allow my mind to drift to the what ifs, whys and maybes… but really those don’t help anyone, least of all Timothy.

Who cares why he is the way he is? Is it my fault? Maybe. Doesn’t matter.

What matters is now. And who I’m doing it for is Timothy.


This post originally appeared on The Book of Timothy.

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It’s a special kind of hell to know, or to think you know, there is something wrong with your child even before they are born.

It brings forth a cold, bottomless fear. You don’t even realize you are doing this really natural, almost unstoppable thing– fantasizing about your  unborn child’s amazing future. But you come to know you are, or had been, fantasizing, because all of a sudden a doctor tells you something that stops you dead in your tracks.

You instantly try to freeze your thoughts, afraid to think anything good or bad. You try to think nothing, but we all know how that goes.

After we were told, at our 20-week ultrasound, our son, Pedro’s, brain was malformed, I could only picture him as a teenager, skinny, non-verbal and in a wheelchair. For some reason I permitted myself no other “fantasy.”

Speculation about any illness is dangerous territory because our minds naturally go to the extremes, which is why I could only imagine my biggest fears for my child. My tough, wise mother says to just stop yourself from speculating. Tell yourself to “stay in the middle.” Again, easier said than done, but it’s something, in times of crisis, to shoot for.

We forced ourselves to the middle by getting busy getting used to the diagnosis.  First, we cried, together and apart, taking turns learning to console one another. We were older parents but also newlyweds. We had not even celebrated our first wedding anniversary. I had never consoled my husband, Jose, before; I had frankly not known him long enough.

Although I have always been sort of selfishly excessive in my own emotions, I learned I did not like to see Jose sad. I could not stay sad if he was down. I learned I could buck up when presented with Jose’s grief. I got strong to bolster him in his weak moments. He did the same for me.  Our recently stated wedding vows, “In good times and in bad…” took on a new and urgent meaning.

Although at first we promised one another to not say a word about our news and to just  try to proceed as though nothing had happened, we did not stick to this. We did the opposite. We shared the news with our closest family and friends, and our priest.

We found many of our friends had stories and information that was helpful and comforting.  They shocked us by their willingness to share their own, sometimes very painful, experiences.  We asked for whatever types of prayer anyone could offer. We felt literally embraced, supported and transported by our community.

We read up on the condition and explored every resource that somehow related to it. Armed with a clipboard and questions we saw many doctors and specialists. We believed information would be our shield, so we devoured every fact or insight we could find.  Sometimes, often, we hit overload and would have to take a break.

Eventually the cloak of terror that dropped down on us the day of diagnosis lifted, becoming a kind of pain shawl we wore everyday, but were becoming more adept at functioning in.  Strangely, in a little over a month, we grew somewhat accustomed to our new perspective.

But then we took it a step further than acceptance. We realized we had been given the joy of pregnancy, what would be for me, at age 43, my only pregnancy, over to the diagnosis. Pedro had become the diagnosis.

So we started, as so many parents do, to read to him through my belly, play music to him with an iPod attached to a special belt (We found our boy moved crazily to Adagios– he moved so much we worried we were damaging him further).  We talked to him, and we felt a little better as he became more human to us and less of a diagnosis.

The monkey was what really saved us, and I recommend getting one to anyone reading this who is in a similar situation.


It was after work, and I was wandering the aisles of our enormous local Wegmans store when I found myself stopped in front of a shelf of small, organic stuffed animals. There was a little tan monkey with a white stomach who smiled  at me from his shelf.

I reached out  for him  thinking, “If Jose was a baby monkey, this is what he would look like.” This made perfect sense to me at the time, as did my next thought: “This must be our son, our beloved, though feared, Pedro.” This cute monkey was not scary– he was adorable, just as our son would be. The monkey went into the shopping cart.

Driving home, I wondered if Jose would find it silly, my visceral attachment to this little stuffed, perpetually smiling being. I played out my explanation in my mind. When I actually showed Jose the monkey, I stumbled over my words, suddenly unable to articulate the certainty I felt an hour before. It didn’t matter. Jose reached for him and placed him on his chest, a foreshadow of the pose Pedro would take months later.

Suddenly, our baby was real.

We had a way to hold and cuddle him, to see him, to know he was not a diagnosis.  Of course, here was our beautiful baby boy. We were three.

From that point forward, every time we were about to leave the house, one of us would say, “Where’s Pedrito? We need him with us.” And so he came along and helped us move forward, quietly preparing us for the real Pedro, who was and is much, much, much more than a diagnosis.


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Regrets — we all have them in some form or another. I suppose that the toughest ones for a lot of us revolve around our children and parenting in some way. I generally don’t like to hold on to them. I am, for the most part, a “glass half full” kind of gal. A positive person. So “could have,” “should have” and “would have” regrets are generally not my thing.

My family has moved a few times recently. Big moves, to different states. I said to my husband once when we were recently discussing moving, “I think I can be happy anywhere.”

He looked at me and, with a hint of disgust, said, “Yes, I think you could.”

He is the yin to my yang, so to speak.

I believe contentment and happiness come from within, and I am aware that all of that is often easier said than done. However, it helps me to remember this during difficult of times and circumstances, when things catch us off guard and when life suddenly takes a left turn and we have no idea how we got to a place we never intended to be.

That being said, honestly, I do have a few regrets.

Several years ago, during one of my lowest points of desperation, helplessness, heartache and anger, I just cried, “God you have to help me, you are supposed to help me. I don’t know what else to do. Please, just point me in the right direction.” I essentially promised that if God would point me in the right direction for my son, Cooper, I would walk forward with everything I have and not stop.

Here is where the regret comes in. To be totally honest and fling my cabinet doors wide open and let you see the mess, there have been times when I just gave up. I know as parents we are supposed to advocate and fight for our children with everything that we have. And we do, for the most part.

Looking back, though, there are things that I wish I had fought harder for and had not given up on.

One of those things is inclusion. Yesterday, when I read this post, my heart broke a little. It broke because I regret not fighting harder for Cooper to be included.

My daughter, Hannah, grew up with a boy in her grade who had autism. He was fully included from the beginning. When Cooper was getting ready to start school, I remember asking Hannah questions about how this classmate functioned in the room — everything from what type of work he did to a barrage of questions about how the other kids interacted with him and treated him. Finally, exasperated with my questions, she gave me an answer that has warmed my heart and haunted it at the same time.

“I really don’t know what you want me to say. He’s just one of us.”

Inclusion is important because it leads to community. It is something that typically-developing children have because they go through school with a community of peers — a group of friends who, for better or worse, have a bond. Yes, some are stronger longer lasting or more more resilient than others. But in some form or another they all have a sense of belonging, of being a part of something. They recognize each other and say things like, “He’s just one of us.”

When children are denied an education, they are denied a community. Our children miss out on a support system. They miss out on friendships, valuable learning experiences and life lessons.

Cooper does not have that sense of community found among classmates. He does not belong, he’s not one of them. While this makes my heart sad and I regret not fighting harder, I can not change the past. We can only move forward.

Inclusion creates community. Everyone matters. Everyone has value.

Fight. Do not stop.

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