The Face of ADHD That Goes Unnoticed

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My daughter is a question mark.

She’s confusing to specialists and her parents alike. It seems there has been some speculation from minds larger than mine that she may or may not have inattentive attention-deficit/ hyperactivity disorder (ADHD).

She could be one way, she could be another, they just don’t know. And that, my friends, is where I lose my sh*t.

I entered into the land of acronyms, Individualized Education Programs (IEPs), and those bigger minds I mentioned long before my daughter was even a twinkle in my husbands eye. My son was more of a sure thing, everyone seemed to feel the same way — something isn’t right with this one. After a long heartbreaking trip through a maze of specialists and people that felt they had the right to offer up their opinion, it was finally decided that his chronic ear infections had caused a severe speech delay due to hearing loss.

His tantrums were his frustration at being unable to communicate with anyone and not the autism a few preschool teachers seemed sure that he had. Pretty sure those ladies got their certifications at the Vidal Sassoon Hair Institute, but I digress. A couple of years of speech therapy and we were in the clear.

There is a lot of talk about how quick we are to slap the ADD/ADHD label on a misunderstood kid. To a point, I agree with this summation. When a little boy is tearing his classroom apart with no thought to consequences and can not for the life of him quiet his mind, it may be time to step in. There are also little boys that never stop talking, are constantly moving, and listen when the teacher says stop. Two different boys, but an outsider looking in might think both have some degree of ADHD. The reality is, boy number one may need some extra help, boy number two may just be an animated and active kid.

People are quick to zone in on the boys, but guess what? See that quiet little thing in the back of the classroom with the dreamy look on her face? See how she’s not popular with the other girls? Yep, that’s my girl, and possibly a different face of ADHD.

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Inattentive ADHD is a different shade on the same rainbow. Most of the time when it manifests itself in girls it goes unnoticed. My little one does not act out, does not disobey, and anything going on inside her head that confuses her stays right there.

For a moment I was crazed with that same proactive attitude I had with her brother — must get help now, early intervention is key, something is different here and only a team of specialists can make it right. So I made the appointments, took her to the evaluations, and was only given a question mark this time.

After taking a step back and giving it thought, I figured out something. This is about me, not her. My fear is that she will go into the public school system and get lost in the shuffle.With no paperwork in place, how can she be successful? The answer came to me with that question mark. How will we know unless we try? This time there will be no guide for my daughter’s journey. It will be a trial by fire for her and I.

Maybe we will find our way back into those offices in time, but for now I’ll just relax and take her for what she is. She is beautiful, smart, loving, loyal to a fault, and stubborn beyond my conception. There is no map for how she should be and maybe that’s the perfect answer.

 

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Dear ADHD and Anxiety, I Have a Few Favors to Ask

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Dear ADHD and anxiety,

I want to thank you for showing me what patience and caring truly is.

You never cease to amaze me with how you can disguise yourself in my beautiful niece. She is so intelligent (yes, intelligent, the IQ tests prove it), but you rear your ugly head each and every day. Even a simple task like brushing her teeth and taking her medication requires non-stop reminder notes and special pill cases to get it done and not forgotten.

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When Lindsay becomes overwhelmed with all her schoolwork, she will cry or ask to leave class because that’s when ADHD’s “bestie,” anxiety, comes to hang out.

I would love for the two of you to leave her alone and let her find peace in sitting in a classroom, just once.

I would love for the teachers who deal with Lindsay to not look at her and see a “lazy” kid, but a kid who works hard to be present and listen to their words. Instead she hears the heater banging, the noise in the hallway, sees the paper on the floor, thinks about what she has to do in her next class and focuses on the kid tapping his pencil. She’s not being disrespectful. She’s using every ounce of energy to stay right there in the moment.

I am thankful for all Lindsay adds to my life. She is so creative and energetic, and she’s an amazing singer.

Could you please stop making her question why she is different and why things have to be so hard? She asked me once why she couldn’t just be normal. ADHD and anxiety make life 100 times harder and it’s a matter of learning to manage this as she gets older.

I just want you to please let others know it’s not a choice. It’s not being disrespectful, lazy, or a case of if she really cared she could do better.

Lindsay is a shining star and I love all of her, but I need you to help others to see her as I do.

Love,
Krissy

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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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.

father and son in superman shirts hugging in park

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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 

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