I got mad when our new pediatrician said, “Your daughter’s not talking much.” Then she asked the question that changed everything: “Does she have a diagnosis?”

We’d changed doctors after the birth of our son, and we were going in for his 2-week check up and Lily’s 2-year wellness visit. I had our newborn son strapped into the car carrier and held my daughter’s hand. We were practically dancing, walking from the car to meet my husband in the lobby. Lily was singing “Today is Monday.” She knew all the words, the foods for each day of the week. She sang the song beautifully.

My heart was full. I clearly remember thinking, “I can’t wait for the new pediatrician to see how beautiful and smart and strong she is.”

Lily had been reading phonetically since she was 18 months old. She knew at least a hundred words and at least 50 songs. She was obviously the happiest, most beautiful, affectionate and brilliant child any pediatrician could meet.

When we got called to the examination room, my husband and I laughed because Lily saw the doctor’s pink polished toenails and knelt down and tried to lick them, as if they were candy. I pulled her into my lap, and we got down to business. We answered all her questions with, “Yes.” Lily had met every milestone. Until that fateful question: “Does she have a diagnosis?”

Shocked, I paused, then said, “But she talks all the time. She has an incredible vocabulary. She knows entire, complicated songs. She loves learning and has been reading since she was 18 months old.”

“Yes,” the pediatrician said. “But she doesn’t seem to be talking with us much.”

At the time, Lily was walking around the room, naming things, full of curiosity, trying to push buttons on the doctor’s old computer.

The pediatrician noticed my obvious shock, and said, “It’s probably nothing to worry about. We’ll wait until her next visit and see how she’s doing then.”

I don’t remember another thing the doctor said about Lily or our newborn. My husband didn’t seem fazed by the interaction. I could think of little else.

I mulled it over on the drive home, talked about it with my husband that night. “What do you think she meant, ‘Does she have a diagnosis?’ Do you think she’s saying Lily has a learning disability or autism?”

unnamed (53) I was angered at the suggestion and kept remembering a talk I’d had with my husband’s uncle, who worked most of his life with people with disabilities. We’d had a long conversation, but what stuck with me was him saying that multiple mothers of children with autism had said to him, “I don’t think my child loves me.” I remember thinking, “If that’s what autism is like, we never have to worry about Lily being autistic.” She’d always been happy and affectionate. She loved to sit in my lap, cuddle and play our made up games. She would laugh at the simplest things. With me.

As I talked it through, I realized she didn’t always make eye contact with my husband, my mom or her babysitter. I started piecing together a picture I hadn’t seen. Lily wouldn’t ask for things. She would reach for what she wanted, give signals that she wanted to be picked up. She would point to words on books as she sounded out words. She could read simple books she’d never seen before. But she wouldn’t point to or ask for things she wanted. I’d once found her sucking on a wet rag, rather than asking for water. She repeated phrases from shows or songs, but she didn’t talk with us.

I called a friend who works with 3- and 4-year-olds with special needs and asked what she thought of the pediatrician’s question. I expected her to be incredulous, too. But she gently told me, “Your pediatrician sees a lot of children every day, and if she thinks there may be issues, it might be worth looking into, worth getting her tested.”

I cried and said, “But she’s so smart and happy and affectionate.” And my friend delicately replied, “Yes, she is. And still will be, even if she happens to have autism or a learning disability. And if she does, there’s so much that can be done to help her, especially when you catch it early.”

I couldn’t sleep that night. I cried and cried and cried. I was afraid that the daughter I knew and loved was gone, and I might view her differently if she had a diagnosis. I realized I was crying for myself and my expectations.

I woke up determined. I started reading about autism. I Facebook messaged a friend who posted a lot about autism. She guided me to Easter Seals. I called them that day, set up an appointment to have Lily evaluated in our home. I was upset that it would be a month before they could come. I called another friend who has a child with disabilities and got a recommendation for a behavior specialist doctor. The doctor was booked up, and the appointment, made in July, was for March of the following year. I got the ball rolling.

Here I am, a year and a half later, still with the same beautiful, affectionate child. She gets occupational therapy and speech therapy weekly and is in her second year of special education pre-school with teachers she adores. She is happy and loving, and I’m her biggest advocate.

Not a week goes by that I don’t think of that pediatrician. She retired last year, and she’ll never know the impact she’s had on our lives. I give thanks for her. I appreciate that what she asked wasn’t easy. She took away the Lily I envisioned and gave me reality.

Reality is that my daughter’s brain doesn’t work the same as most people’s. It’s extraordinary. She’s eccentric and silly and fun. She’s still the happiest, most beautiful, affectionate and brilliant child. I’m the one who’s changed. I’ve gained more tools, more understanding.

As a registered nurse and now a mother of three, I appreciate a doctor who was willing to ask the hard question, the one that changed lives.

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At an Autism Society autism conference I attended a few years back in Orlando, Florida, a father, probably in his sixties, approached me. He had a nonverbal son. We discussed his son’s need for an aide and several supports. Then he asked me one of the most difficult questions I’ve ever been asked as an autism advocate:

 “What do you think will happen to my son when I’m no longer here?”

It was a question that caught me off guard. I wasn’t sure how to answer. This parent expressed his deepest fear. 

My parents had no idea what my future had in store when 4-year-old me was diagnosed with autism. Now at 26, my future is secure as an adult with a good job, a place to live independently, friends and a great sense of how to navigate the world around me. My parents can breathe easy… but it’s not so simple for so many other parents of children on the spectrum.

I still regret not being able to help this man. I was speechless. Speechless because it was a question I could never imagine being asked. I don’t know if he will ever read this article, but for the small chance he does, I would like to share this letter with him.

I can’t even imagine how you’re feeling right now. When we last spoke, I didn’t have all the answers for you because I never had to approach the question before. Today though, I want to tell you this…

In our autism community, if you’ve met one individual with autism, you’ve met one individual with autism. Everyone is unique. I’ve met those who have been able to start speaking and live independently and others who have had to live in group homes. The spectrum is so wide. Unfortunately I still can’t fully answer your question.

What I’m telling you, though, is you have to be the answer to that question. As overwhelming as this may all be, one thing I want you to think about is hope. You need to be his your son’s advocate and secure his future through your actions in the present.

This issue is gaining national attention with both the ABLE Act in Congress setting up tax-free savings accounts, and the AGE-IN Act, which provides support for a person who turns 21. Research and follow the response to the growing demand for providing housing for our autistic community. Look at employment and training opportunities being developed.

Then make your plan. You know your child best.

When you think of hope for the future, you need to make plans. Start discussing with close friends and family who could take care of him. Most important, find out who can show him unconditional love each and every day. Find the support system for him that will make him happy. And while you’re here with him now, make sure you’re always playing up to his strengths. Talk about your son’s strengths and weaknesses to others so they have a better understanding of who he is.

I know what you’re probably thinking — easier said than done, right? What happens if I don’t have the family, friends or supports who are going to help with this transition?

Well, while you’re pushing and fighting to figure out these answers, I’m going to go out there and fight for your son, too. Your son is part of our community, and we’re all in this together. I’m going to fight for your son when I strive for adult services for those with autism. Whenever I push a grass root campaign for SSI payments and special needs housing for adults, I’ll be thinking of your son. 

That’s the thing about our community. Regardless if you can’t speak, you’ll always have a voice — mine. I will tell your  story. Our stories needs to be told. We will keep fighting. We have it in us. We have the passion. We have determination. And, most important, we have heart. 

I’m sorry it’s taken me this long to get back to you with an answer. I’m still learning every day more and more about how to be a better advocate for our community. I hope if you’re reading this now you can sleep a little easier knowing that, even if the question of what happens next can be a little scary at times, we’re searching for answers. Our kids are growing up, and so are we. I know that we can make a difference.

For those reading this, I hope you’ll share this letter in the hopes that it will reach this man, along with anyone you know who’s ever questioned what the future has in store for their loved ones. The bottom line is no one has a way of knowing how things are going to play out. The only thing we can do is control the present and our actions today to prepare for the future. Let’s pledge to become the advocates we desperately need to be to answer these questions. 

I encourage you to comment below to keep the conversation moving forward and use the resources of our Mighty community to good use. We’re all in this together. 

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My family.

Kerry’s new book, “Autism and Falling in Love,” tells the story of how he was nonverbal as a child and overcome the odds to become a national speaker and find a relationship as an adult. You can learn more about Kerry and his book here.


We love this friendship.

Alex Merrigan, 3, of New South Wales, Australia, has autism. A few months ago, his parents brought home an autism assistance dog, a 1-year-old labradoodle named Ollie.

Although it’s only the beginning, the two have embarked on what Alex’s parents believe will be a lasting and meaningful friendship. And it’s also pretty adorable.

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“Ollie helps to make Alex’s world a little more safe and secure,” Cassandra Merrigan, Alex’s mom, told The Mighty in an email.

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Merrigan says that autism service dogs are still new therapy territory in Australia, according to HLN. She hopes that the photos she takes of Alex and Ollie can help spread awareness.

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For Alex to want to go and sit with Ollie and have a cuddle means the world to us,” she told the outlet. “Alex’s autism restricts his awareness of the world around him. The fact that Ollie is already becoming real to him is amazing.”

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Merrigan told The Mighty that the bond between Alex and Ollie is progressing slowly but surely, and the family has high hopes for the two of them.

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“On those days where Alex is with it and switched on there are some very lovely moments between the boys,” Merrigan told The Mighty, “Alex giving Ollie a casual pat or attempted cuddle in passing. We’re optimistic of a great friendship to come.

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To keep up with Alex and Ollie, visit their Facebook page.


“What if he has an autistic moment in the middle of the store and people stare?”

“What if his vocal stimming and rocking in his chair disrupt the others?”

“What if it’s crowded and I’m trying to push a wheelchair and a shopping cart at the same time?”

“What if all the handicapped parking places are already taken?”

My wife was debating whether to engage in a game of Walmart Roulette with our son.

Normally she tries to avoid places like Walmart when she has our son with profound special needs accompanying her. But this time, the items she needed required a trip to the superstore here in our small town.

Fear was whispering in her ear though, and doubts were slipping in through the unlocked door to her heart. Taking a child with autism and cerebral palsy into such an environment would require staring down the coward within.

Navigating my son’s wheelchair and a shopping cart simultaneously with the skill of a NASCAR driver, she made her way down the narrow, packed aisles.

That’s when she saw them.

Two developmentally disabled young adults, with their caregivers, were in the produce department.

As she passed by, one of the young men began to wave and gesture towards her. He approached her and my son, trying to communicate. Garbled nonsensical words and sounds gushed forth as the young man gesticulated wildly. His caregiver approached him from behind and tried to explain and apologize.

My wife waved the caregiver off at the pass and flashed him an “It’s OK, I’m safe” motion. For the next couple of moments she engaged and interacted with this intellectually-challenged young man as if they were lifelong friends.

“He is trying to tell you he likes fireworks and wants to know if your son likes fireworks as well,” explained the caregiver, pointing to my own teenage son in his wheelchair.

Soon, Becky moved on to finish her shopping and waited in one of the checkout lines. As she moved steadily closer to the Holy Grail of finally paying for her items and exiting the store, a moment ordained in heaven unfurled right at the counter.

The challenged young man and his caregiver were across the aisle from her, checking out with a different cashier. The young man made eye contact with Becky and began to wave.

As she waved back and flashed him that dazzling smile I first noticed 24 years ago, he left his caregiver’s side and walked over to where Becky and Jon Alex were.

He stopped right in front of my wife and gave her a big, yet tender hug, gingerly wrapping his arms around her and just holding her for a second.

No doubt the moment had been God-breathed, God-inspired and God-ordained. Sitting in the car, tears in her eyes, Becky thanked God for that moment.

A moment where fear was trounced, the coward within defeated and where grace was allowed to not only abound but to triumphantly be displayed.

“I needed that moment,” she would tell me later. “That was God’s gift to me. If I had let the fear win, I would have missed something beautiful.”

She did need that moment. But she was only partly right.

We all needed that moment.

The young man needed it. His caregiver needed it. The cashier needed it. Everyone in the store who witnessed the encounter needed it.

That was a gift to all of us.

 A masterpiece.

Sometimes, you’ll find a masterpiece — even at Walmart.

Becky with her son Jon Alex

This post first appeared on DifferentDream.com.

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I’ve been saving for our family to go to Disney World in Orlando for years. So I decided in November 2013 that is was time to finally plan it. My partner’s mom and her husband gave us their points on their Disney timeshare and booked us at Disney’s Animal Kingdom Lodge overlooking the savanna. It wasn’t just any room – it was a beautiful two bedroom suite.

I did everything I could to prepare our son with autism for the trip. We even went to the airport on a tour for kids with autism and explored the plane a month early.

Fast-forward to the day of take-off. We get on the plane, and as it backs out on the runway, our son completely and utterly loses it. My partner was sitting next to him, with a gentleman in the aisle seat, while I sat behind them with our other two kids. I had to change places with that gentleman to help my partner with our son, who shrieked loud enough for the whole plane to hear, tried to climb over the seats in front of him. He just wanted to escape, and there was no place to go. This lasted for around a half hour. It was awful — one of the worst experiences we’ve ever had with him. By the time it was done, the three of us were a sweaty mess with adrenaline coursing through our systems.

Honestly, I wouldn’t have blamed the people around us for being irritated. Honestly, I’d expect some people to be judgmental. But no one was.

A lady sitting near me asked if there was anything she could do and told us we were doing a great job with him. She even gave us a salad she’d bought in the airport for an outrageous amount of money and insisted we take it. I cried; I didn’t expect anyone to see how we were trying to comfort him and get him to be OK and restrain  without hurting him. It was hard, it was awful, it was loud, and someone saw through it all to the love and care we were using with him.

When we landed, the people behind us weren’t judgmental but kind. The gentleman I traded places even stated that he had to be sedated to fly or he’d feel inclined to do what my son had been doing.

I never expected people to understand and care like that. In fact, as I type this, I have tears running down my face. That was one of the best gifts I’ve ever received – the kindness and caring of strangers.

Family at Disney Land

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].
Hint! Some gifts don’t come in packages.


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.

Love,
Kerry

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 Kerrymagro.com.

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