What My Son Told Me That Finally Helped Me Understand His ADHD

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“Simon is impossible to teach.”

“A major distraction in class…”

“Wastes his and others’ time..”

“One of the worst students I’ve ever had the misfortune to try and educate…”

“Will amount to nothing in life if his attitude doesn’t change…”

When I was at school, they didn’t have things like ADD or ADHD. What they did have, however, was me. I was labeled a problem child from early on — a reputation that stayed with me until the end of high school. Back then, the “treatment” wasn’t a controlled diet, occupational therapy or medication; it was a solid thrashing. No matter how much I tried, I just couldn’t concentrate in class. The facts and figures thrown at me made absolutely no sense, so I became the class clown, trying to annoy the teachers so badly that they’d throw me out of class to sit in the corridor for the remainder of the lesson. Needless to say, I barely scraped through school, which in turn brought on its own smorgasbord of problems at home.

Being labeled like this led to some serious self-esteem issues that I was only able to sort out much later in life. I’m still dealing with some of it today. So when my son was diagnosed with ADHD, my wife and I decided then and there to give him the best possible chance, no matter what. We changed his diet, added supplements and vitamins and sent him to occupational therapy for two years. This all helped to a degree, but we finally had to accept that medical intervention was inevitable and necessary.

Now before you pass judgment — yes, I agree that Ritalin is over-prescribed — but for us it’s been a real game-changer. My son is currently in the third grade, acing his reports and getting full mark for maths at a grade-four level.

I think the clincher for us was when I asked him why he couldn’t seem to concentrate in class and he answered, “Dad, it’s like when the radio isn’t tuned in properly and all you hear is that irritating noise.” That was when I understood. He was drowning in all the static and only the occasional snippet of information was getting through to him. See, ADD and ADHD don’t allow you to filter out and concentrate on one specific thing; you’re trying to concentrate on everything all at once. It’s like having 20 tabs open in your browser, each of them with their own audio playing at full volume and trying to understand every single one of them, all at the same time.

I’m not saying that medicine has “cured” him completely. We still have challenges, small and big, every single day. When we do homework together in the afternoon, he gets angry and frustrated easily, and I have to maintain the calm by speaking softly to him. He obsesses over the tiniest details to the point where it’s all he can think about until he either has a total meltdown or the perceived problem is sorted out. Part of that problem is that he battles to see the forest for the trees. He’s an emotional kid who is easily hurt, meaning we have to be careful how we reprimand or speak to him, being firm yet gentle. When he wakes up in the morning, he goes from fast asleep to completely hyperactive in the space of a minute. Loud and boisterous with a dash of insane at the crack of dawn can be frustrating, to say the least. It’s also a challenge because we have 6-year-old twin daughters who also need time with Mom and Dad, so it becomes a bit of a juggling act to ensure that everyone gets the attention they need. Unfortunately, sometimes one of them will inevitably feel left out.

My son is also keenly aware that he’s different from a lot of his peers, and I think that plays on his mind a lot. At his last checkup with the pediatrician, he turned to my wife and said, “What if they can’t fix me properly?” The fact that he worries about it so much is difficult for me. It’s a burden knowing that I’ve passed this on to him, making his life a lot more difficult and complicated than it needs to be. Yet, the strides he’s made to overcome his ADHD leave me in awe of his determination and strong will. I’m trying to teach him to celebrate his differences, to revel in them and to be proud of them because they are what make him, to me at least, the most special little boy in the world. And I wouldn’t change a single thing about him. He’s taught me how to be a kinder, better, more gentle father and human being. Despite the challenges we face each day, we face them together as a family full of love and respect for each other.

I love you, Nicnac. No matter what.

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This post originally appeared on It’s a Mad Dad World.

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The Part of My Son's Condition That's Hard to Write About

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Erin Putman's son This is hard to write about.

Tonight, I walk the line.

Tomorrow, I probably will too. I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.

I walk the line between complete acceptance of Evan’s Williams syndrome (WS), almost to the point of celebration — and complete worry, disappointment and concern for his differences and how they will affect him throughout his life.

When Evan giggles and jumps in his carseat, peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out the door to see him — I celebrate his WS. I celebrate that he’s filled with joy — simple, unadulterated joy about 80 percent of the time. When he whispers “I la you” before I leave his room at night — three words we’ve worked on for over a year, I celebrate.  When the director of his preschool writes me a note, thanking me for allowing them to be Evan’s teachers because of the light he brings to their lives — I celebrate. (I also blubber like a weepy fool, but that’s another story.)

When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I’m concerned. When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS; it can be really hard,” I hurt. When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside. I feel guilt because of course I know he means well; he just wants the positive interaction, but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he’s in middle school and he greets others with no abandon.  When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed. I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress. Until it’s not anymore.

When I hear Evan singing “The Water is Wide” on the monitor and then humming the parts where I hum because I don’t know the lyrics, I feel joy. I feel pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it; I feel pride in every detail I share.

I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing 25 or so genes out of the more than 20K we each have. It’s just a small part of what makes him Evan. ”

I just keep walking that line.

The line between celebration and worry. The line between pride and guilt.

I can say that I’m on the side of celebration far more than I’m on the other side. I feel blessed for that to be true. But the other side exists. And it can be an ugly, dark spot to step into.

That is why I walk the line.

This post originally appeared on Musings by Mama.

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When I Think About Our First Year With Autism

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If I could go back to the day it all started I would tell myself this is not the end; it’s only the beginning.

On August 28, 2013, my son, Dylan, was diagnosed with autism spectrum disorder.

I remember sitting in an exam room at Boston Children’s Hospital. The green plastic chairs and brightly colored toys punctuated the colorless room. It was a day just like any other day. My son had previously been examined by a neurologist, an audiologist, a geneticist, a gastroenterologist, a dermatologist and early intervention specialists. Now we were sitting in the Office of Developmental Medicine, and I was expecting to hear the same thing we’d heard every other time — that one disorder or another had been ruled out, but maybe you should see another specialist in another field.

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Only there was something different about this time. I could tell by the way the doctor was speaking to me, listing my son’s strengths, softening the blow that was coming next.

When she said the words “autism spectrum disorder,” I fought with everything I had to hold back the tears trying to sneak their way out of the corners of my eyes. I remember being angry with myself for being unable to control my emotions. I remember being ashamed that my body was trying to mourn my child who was alive, playing with trucks on the floor. And I recall wandering through the parking garage, finding my car, sitting in the passenger seat and not speaking for the entire ride home.

Summer turned to fall and I found myself dealing with therapists, the public school system, educational advocates and more doctors. As my son’s sign language turned to speech, I learned that Itoo could vocalize new things; I was capable of advocating for him. When he became steadier on his feet, I too felt strong enough to conquer this curveball coming at us. And even though we were making progress, we both experienced setbacks and regression but continued to crawl forward.

Fall became winter and with it, the snow began to fall from the sky, and my husband and I began to float away from each other just like the flakes outside my window. Things continued to change, life continued to move forward; the world doesn’t stop because you have a child with autism.

Over a year has passed since that day at Children’s Hospital, and today I sit here writing, looking back not on where we’ve been but at how far we’ve come. And although I know our journey together will not be easy, I know it will change us for the better.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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To the Mama Wondering What Life With Your Baby's Diagnosis Will Be Like

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I love to stare into my son’s deep brown eyes as much as possible. He just recently began holding his head up, and he seems so different now — on his way to becoming a little boy, instead of the 8-month-old baby he is. His eyes have always held a special place for me; they have a calming look. I used to stare into his eyes as I rocked him in the squeaky, broken hospital glider each night during his three month hospitalization after birth.

Those days were chaotic and scary, with doctor after doctor coming in, running tests, handing down diagnoses, scheduling more tests and crushing hope. By the end of the day, all I wanted to do was snuggle the beautiful baby boy I’d created. I wanted to get lost in his eyes. I didn’t want to think about the longterm affects of his doctors’ words — the names of the syndromes they speculated he had and the many, many things wrong with so many of his organs left me crushed. What will his life be like? I wondered in the dark, stroking his tiny forehead.

Mama, those names and diagnoses and what they entail mean absolutely nothing. That’s what I would whisper in my own ear if I could. I would squeeze my shoulder and wipe the silent tears off my face and tell myself it doesn’t matter what the doctors say. Just get him healthy enough to go home. It gets better there. It gets better when you get away.

At home, he’s just Jackson. He’s just the little boy who’s presence was a total surprise on that August morning when I randomly took a pregnancy test. I was feeling a little off and about to start a medication with side effects. Just to be safe, I checked, and there was Jack, represented in a blue plus sign.

He loves exaggerated kissings sounds, and his laugh sounds like a verbal interpretation of sunshine. His sweet, shy and unassuming smile melts me. He adores his sister to pieces, giving her more giggles without her having to ask, while his father and I do back flips to even elicit a smirk.

He’s not his diagnosis, Mama. He’s Jackson. He’s not VACTERL or Moebius syndrome or Poland’s syndrome. He’s not his limb difference or his cystic kidney. Nothing in his medical chart defines him. He’s just your little boy and always will be. Nailing down a name does nothing but give the doctors a box to check. We keep thinking that pinning a description and label to him will change him somehow. It won’t. He doesn’t get better or worse; his who he is, and he has been from his first breath.

Don’t get bogged down in the labels and the scariness of it all. Get lost in those soulful brown eyes, and see the Jackson you created.

He’s beautiful.

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For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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The Important Reason I Need to Thank My Daughter

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On the day you were born you were placed in my arms, and I held you so very close, caressing your face. I kissed your sweet little baby nose.

At home I held you tight and rocked you in a warm embrace. Oh, how I loved kissing your kissable face.

Weeks and months went by so fast, as they always do, and I watched you grow. You crawled, you walked and climbed. You smiled at me when I’d say, “No.”

I heard you say, “Dada Dada… Mama Mama.” You loved to play peek-a-boo. You were our happy smiling baby; you’d giggle and laugh and then we would laugh too.

Then… I watched as you stopped looking at us; you didn’t want to be held or hugged or kissed at all. I watched you rock and bang your head, flap your arms, spin and twirl. You stopped saying “Dada Dada… Mama Mama,” and you became a different little girl.

I watch you now as you try so hard to get words out of your mouth that you just can’t say; you scream and cry and become frustrated at fighting so hard to find your way.

I miss hugging you, kissing your beautiful face and sweet baby nose, holding your hand and picking you up.

You’ve begun to let us in and become a part of your unique little world, and you’ve shown us that you are still our beautiful, happy, smiling baby girl.

You’ve taught me how to fight and use my own voice and to be your voice too. I’ve learned so much about life, love, patience and hope all because of you.

You came into this world early and fast, dancing to the beat of your own drum. I still can’t believe what a beautiful gift I’ve been given. Thank you for choosing me as your mom.

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How We're Moving Beyond Our Son's Severe Disabilities

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This is the story of a handsome little boy with a twinkle in his eye and a smile that brightens up the room. Spinal Muscular Atrophy (SMA) causes Branden severe and profound disabilities and a wide range of complex health issues. He faces difficult challenges, but his attitude makes growing up with Branden and SMA meaningful, inspiring and happy.

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Branden quietly came into this world four and a half years ago. His cry was silent, and he was immediately rushed to the neonatal intensive care unit to treat pneumonia and fluid in his lungs. It broke our hearts having to be physically separated from him, unable to cuddle, kiss and comfort him, but we admired his courage lying alone over many days and nights, supported by a mechanical ventilator and equipment to continuously monitor his health.

He recovered after a week, but the joy of having him home was soon tested by constant worries over his general weakness (hypotonia) and delay in development milestones. His relaxed nature persisted for months, until his weight stalled. Upon celebrating Branden’s first birthday, we decided to have him undergo a genetic test.

As parents, we shared in Branden’s older brother Jaden’s excitement about having a younger brother. They would be able to run and play together, to make friends, go to school and learn and discover the world! These hopes were shattered that day the genetic test confirmed that Branden had SMA. Based on his clinical symptoms, with neither treatment nor cure available, we were told it would be a hurdle just to get him to his next birthday. The hopes we’d had were crushed.

We don’t think there are words that can fully describe the indescribable trauma, devastating pain, shock and sorrow we felt upon learning his diagnosis. We lost the path in life we’d cherished and faced instead a deep, dark empty hole. We were lost and staggered around this emptiness, into which our tears fell as we cried and cried. Why him? Why us? Why are we at fault? What’s going to happen? How will Jaden take this?

What followed in the first month is a blur. Before we had time to steady ourselves, things got worse. Jaden got chicken pox and then hand foot mouth disease (HFMD), so we separated the boys because we didn’t know what else to do. Branden got HFMD anyway, which caused his vital signs to plummet, and he ended up in hospital.

Funnily enough, this next tragedy was a catalyst for the change in perspective that we needed. We’d felt real loss, but every new day still dawned. We’re all here today, so let’s look forward to tomorrow. Instead of looking down into that abyss, we can look up. And by looking up, we see things. And today, here’s what we see:

We accept what we can’t change this; SMA is here to stay with Branden and our family. It starts with acceptance. After the first month of finding out about Branden’s SMA, we wrote to all our family and friends to share what’s going on with our life and how we felt, and we haven’t looked back since. There’s so much Branden cannot do, and he will always live with many health complications and risks. He likes to ask “why” to so many things and will keep asking until he understands. We answer his questions to the best of our ability so he can move forward.

We won’t give up. Branden’s not shy to ask for help, to say please, to always say thank you. So like him, we focus on what we can do rather than on what we can’t. There’s so much to be done, but it must be done one step at a time: Rome wasn’t built in a day, as they say. We need to accompany Branden on this journey. He’s such a fighter, always bouncing back quickly from any setback. Giving up is not an option.

We smile every day. Branden has a wonderful attitude and strong spirit, which shine through his eyes and sweet smiles. He smiles even when he is ill and hospitalized or enduring the countless visits and tests with the neurologists, nurses, nutritionists, orthopedic surgeons, pulmonary specialists, physical therapists, occupational therapists, hydro therapists and more who care for him. He smiles often and readily shares joy. We do the same.

We live our life as normal. Yes, any travel is limited. Even shopping malls are best avoided. Before going to a restaurant we need to check accessibility, seating and environment. We are still not sure how he can attend kindergarten and school. All activities need proper planning. But Branden doesn’t complain or gripe about these limitations. (If he makes a fuss, it’s often over toys with his brother Jaden!) And Jaden is equally wonderful as our son and brother, who has a beaming smile and laughs heartily. As they can’t walk together, Jaden loves to push his “tee tee” around in his wheelchair. And if he’s not pushing, he walks beside Branden as we push the wheelchair, both brothers holding hands. That’s part of their everyday life — different to others, but normal (and special!) to us.

We’re blessed. That’s not to say we don’t get frustrated and demoralized and worry about health risks and the increasing financial strain. Because SMA is a congenital disease; all health insurance policies for Branden are declined. The special equipment we need to keep him healthy and mobile is expensive. And if the potential SMA treatment drugs going through the U.S. Food and Drug Administration Drug Approval Process are successful, it’s reasonable to expect huge costs every year for life.

Right now, we are happy to have celebrated Branden’s 4th birthday, and we hope there are many more to come. We are thankful that Brandon has reached more than twice the age we were told he would reach at the start. We look forward to helping Branden fit into school and society, and to help him experience a childhood just like other kids without disabilities. We believe he can contribute richly to society, like how he does today in our family. Let’s not be shy about the challenges and constraints faced by children with disabilities, and let’s commit to driving change needed for a better brighter future for them.

We are happy to share more and can be contacted by email at [email protected] or at our Facebook group called “Branden Lim – Growing Up With Spinal Muscular Atrophy (SMA).”

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