Moms & Dads

South Florida parents share their stories and advice

Category: Autism Spectrum (5)

Holding Leo's Hand: Watching Little Brother

"How many autistic children do you have?"

The question stunned me. We had brought Leo, 3, and his brother Angelo, 1, to an event at Nova Southeastern University, where other autistic children and their parents had an opportunity to relax, play and mingle. Leo was diagnosed with Pervasive Developmental Disorder, which is on the Autism Spectrum, earlier this year. We enrolled him at the Baudhuin Preschool, where he's getting the kind of intensive educational treatment he needs to adapt to his condition and thrive. We're pleased at the progress he's been making so far. We know we have a long way to go.

"How many autistic children do you have?"

Why had it not occurred to me, before I was asked this question, to even wonder whether Leo's little brother might be facing the same challenge?

Angelo is now 18 months old. He's definitely talking more than Leo did at his age. In fact, there are times when it seems Angelo's brain moves faster than his mouth -- he wants to say things, to communicate things, but doesn't yet know the words or how to articulate them. He strikes us all as, dare we say it, "normal."

According to a recent study, the younger sibling of a child with autism has a little less than a 20 percent chance of developing the disorder. That's a higher number than I want to confront. I see my younger son laughing on a swing, running to hug me or his Mommy, saying "cheers!" whenever Mickey picks a mouse-ka-tool. I see him stacking blocks, seven, eight, nine high (Leo could barely do seven, even when he was older than that). I don't see Angelo lining up his toys, something Leo used to do with regularity.

Is Angelo going to develop PDD or some other form of autism? We do not know. We are not worried. We'll look for the signs. We'll talk to our pediatrician. We won't be afraid.

"How many autistic children do you have?"

As many as we can love.

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An autism-related apology to my readers

I'm an idiot.

Not really, but I have needlessly offended some readers, and I want to apologize. In my most recent post (which was published in the Sun Sentinel print edition on Aug. 26), I included a line that rubbed some readers the wrong way. I was writing about how my son, Leo, was playing appropriately with a toy helicopter and a toy truck (the helicopter was held in the air, the truck stayed on the floor). Parents of autistic children no doubt recognize that this is a good thing. What's unremarkable for most children is, for an autistic child, an encouraging sign. My wife was less impressed by this display than I was, likely because she has a better sense of what our son can do. So here's how I phrased it:
She looked at me as if I'd just figured out how to tell the hot water tap from the cold. Our son is on the autism spectrum, not the idiocy spectrum. Different, not less. He knows how to play with toys. What's the big deal?

If you read that to mean that I believe a child who cannot distinguish between a helicopter and a truck is an idiot, then I owe you an apology. It is not what I meant to convey. I am sorry that I chose words that caused you even an ounce of hurt.

What I intended to convey was that it should not have surprised me to see my son doing something he was capable of doing. That's where my wife and I differed. I doubted his capability. My wife did not. I compared it to me not knowing the hot water tap from the cold. You would expect me to know the difference, I should have expected Leo to know a helicopter from a truck.

There are children who are on the autism spectrum who would have trouble playing appropriately with toys. Leo is not in their company. But they are not idiots, and I never meant to imply that they were.

I appreciate your understanding.
Earlier: Holding Leo's Hand
Holding Leo's Hand: Reason to hope
Holding Leo's Hand: Little Big Things
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Holding Leo's Hand: Little Big Things

Well, I thought it was a big deal. And maybe it was. Probably not, but to me...

We know that Leo, who was diagnosed with Autism Spectrum Disorder in June, has a good prognosis and that he's likely to progress in ways that will make us wonder whether the diagnosis was a mistake (it's not). We also know that he doesn't quite connect with others the way most 3-year-olds do -- he's hesitant to make eye contact and struggles with the concepts of sharing and taking turns. But he's doing very well. We're encouraged.

This weekend, I saw something that thrilled me. My wife was less impressed than I was, likely because she is less fearful about this whole journey than I have been. Anyway, here's what it was: We were told that autistic children tend to play with toys differently than other children. They line up their toys (Leo does that) and they use objects in ways other than intended. I remember being asked if he pretends toy planes can fly. I don't recall the answer. I thought so, but I couldn't be sure.

Well, this weekend, I was sure. Leo was playing with a toy helicopter in one hand and a truck in the other. And while he kept the truck on the floor, he held the copter in the air.

"Did you see that?" I asked my wife. She looked at me as if I'd just figured out how to tell the hot water tap from the cold. Our son is on the autism spectrum, not the idiot spectrum. Different, not less. He knows how to play with toys. What's the big deal?

I want that confidence. I want to put every achievement in a proper, "normal" perspective. I want to smile at the little things and save the "oohs and aahs," the "marvel," for the big things, like an A on a calculus test or something. There's no need to feel giddy about the fact that Leo recognizes the difference between a helicopter and a truck and adjusts his play accordingly. No reason at all.

But I'm giddy. Sue me.

If you're curious about whether your toddler might be autistic, please discuss it with your child's pediatrician.

Other articles in this series:
Holding Leo's Hand
Holding Leo's Hand: Reason to hope

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Holding Leo's Hand: Reason to hope

“Mommy, I want eggs, please.”
“Go tell Daddy.”
July 28, 2012

At some point, we will wonder whether the experts who placed my son Leo on the autism spectrum were simply mistaken. He will speak to us in a clear voice. He will master making eye contact. He will learn to share his toys. He will express his frustration in words instead of seemingly hostile actions. He’s going to be OK.

This was the prognosis we received last week when we brought Leo to a neurologist at the Miami Children’s Hospital Dan Marino Center in Weston. My wife and I had no idea what to expect when we walked in with Leo, 3. Would they need to do an MRI? Would they have to knock Leo out so that he could lie still in some scary looking machine while some unpronounceable rays scanned his brain? Would they have to knock me out to spare me the fear of watching what they had to do to my son?

None of that. And I was comforted in the knowledge that as much as I have dreaded the journey we are taking with Leo, we are lucky compared to the parents of other children living with autism.

We will wonder whether this was a misdiagnosis, we were told. But it’s not.

After I revealed Leo’s challenge last month, I was overwhelmed by the outpouring of support from family, friends and other parents whose children are on this journey. And I’m embarrassed at our fortune. So many children will never experience the success predicted for Leo. Their parents will never wonder. They know.

“If you’ve met one autistic child, you’ve met one autistic child,” a fellow reporter told me. He spoke from experience. His pre-teen daughter is autistic. He was one of the first people I told, and one of the first to offer me the comfort that the diagnosis is nothing to fear. Even as he described his daughter to me, I realized that his family’s struggle was more intense than mine. I felt lucky. Glad I wasn’t in his shoes. Then guilty. I fear a future he would probably embrace for his own child.

The other day, in a fairly clear voice, Leo asked his mom for eggs. He asked in a way that was almost eerie, because it was something I said would be a sign that this is all some kind of bad dream.

My son is not like other boys. He’s different – not less. He has to learn things other kids take for granted. We have every reason to believe he’ll make significant progress.

But no, we will never wonder. We are the parents of an autistic child. We will never lose sight of that. We will hold his hand as long as we can. Others will hold our hands, in love and support. In time, Leo, my wife and I will be the ones offering a helping hand and letting others know they are not alone.

Afterthought: This article uses two lines that are well known to those who are familiar with the struggles of autistic children and adults. The first is the quote my reporter-friend relayed to me about meeting an autistic child. The second is the term "different, not less." I decided the day after I originally posted this article to include these movie clips which are, for ME, the source of that line. They are from the HBO movie Temple Grandin, about the noted autistic doctor (you read that right). Different, Not Less is also the title of a book she wrote about successful people with autism, Asperger's and ADHD. Good luck keeping a dry eye while watching this.

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Holding Leo's hand

I don't want to write this one. I figure if I don't, it will all go away and it'll turn out that we've overreacted, misunderstood, misdiagnosed... I figure if I don't acknowledge it publicly, it will go away privately, and I'll wake up tomorrow morning with Leo telling me, in a clear voice, that he's hungry and would like some breakfast, please.

Leo is now 3-and-a-half years old. We noticed a while ago that his speech skills were not developing the same as other children his age.

We figured at the time that every toddler develops at a different pace, so while we took notice of the delay, we weren't worried. Time passed. After he turned two, we had him screened. In many ways, he was on target with other kids his age. We were reassured.

But another year passed, and we watched as other kids his age were speaking more clearly and moving on to potty training and other typical milestones that didn't interest Leo in the slightest. He certainly says more than he used to. It's not as if there's been no progress at all. Still, you just know. Something's not right.

We talked to our pediatrician. She was familiar with the signs we described to her. She gave us one of those official-sounding diagnoses that's really designed to authorize more intense testing and screening. And that's what happened. After Leo turned 3, we confirmed what we needed to hear. Leo has what they call "pervasive developmental disorder-not otherwise specified."

In plain English, Leo is sort of autistic. I don't want to overstate his symptoms and make it sound as if he's headed for Rain Man territory. As autism goes, Leo's one of the lucky ones. We've heard of children much older than he who have yet to speak their first words. The more we become immersed in this, the more I'll be able to distinguish between Leo's challenge and those of other children on the autism spectrum.

At the same time, I don't want to minimize the challenge he's been handed (the challenge we've been handed right along with him). We're on this journey now because something's wrong, something we need to address. My wife, a Broward County school teacher, has been a rock throughout this process, making sure we are aware of every available resource for children on the autism spectrum. I've been a mess. But I know we're not alone. We have each other, and we know there's support for Leo and for those of us committed to his growth and development. We're not alone.

Next month, Leo will be a student at the Baudhuin Preschool in Davie. We hear great things about the place. In a lot of ways, Leo's journey begins there. And yes, his mom and I will be with him throughout this journey, holding Leo's hand every step of the way.

If it were up to parents, every child would be diagnosed with every possible illness and/or disorder. Although we had our suspicions, the key thing we did was talk to Leo's pediatrician. If you think your child is facing a similar challenge, or a different one, please talk to your pediatrician. There are organizations in Broward and Palm Beach that engage in autism research and treatment; we'll be writing about them as we get to know them along Leo's journey.

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About the authors
Gretchen Day-Bryant has a son in high school and a daughter in middle school. She’s lived to tell about the struggles of juggling little kids and work.
Joy Oglesby has a preschooler...
Cindy Kent Fort Lauderdale mother of three. Her kids span in ages from teenager to 20s.
Rafael Olmeda and his wife welcomed their first son in Feb. 2009, and he's helping raise two teenage stepdaughters.
Lois Solomonlives with her husband and three daughters.
Georgia East is the parent of a five-year-old girl, who came into the world weighing 1 pound, 13 ounces.
Brittany Wallman is the mother of Creed, 15, and Lily, 7, and is married to a journalist, Bob Norman. She covers Broward County government, which is filled with almost as much drama as the Norman household. Almost.
Chris Tiedje is the Social Media Coordinator and the father of a 7-year-old girl, and two boys ages 4 and 3.
Kyara Lomer Camarena has a 2-year-old son, Copelan, and a brand new baby.

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