What ADHD Really Looks Like

October is ADHD Awareness Month. Educate yourselves and others by sharing accurate information, giving support to your loved ones and teaching your children compassion for others. 

 

 

 

Our daughter has ADHD. I mentioned it years ago on the blog, so for regular readers this information isn’t new. ADHD is different in every child: some have trouble retaining information, others struggle with anger, many have trouble focusing on a task, and making friends during all of this can be really tough.

Last year, a friend on Facebook shared a meme about ADHD that bothered me. It was a brown leather belt and the text said, ” The Original ADHD Medicine”.

It upset me more than I would like to admit obviously because I am carrying it with me to this day. Probably because I think a lot more of my friends on Facebook might feel this way but maybe they aren’t the types to share meme’s.

So I am here to change your perception if you didn’t believe it before today and to lift you up if you did.

ADHD is real. The name sucks, but the disorder is real.

First, if you have three hours to spare (I know), please watch this video by Dr. Russell Barkley. He is my newest hero (maybe even more than John Hughes) because he is changing how people look at ADHD. If you can’t watch the full three hours, please give the first hour a watch. It is mind-blowing especially if you are a skeptic.

 

Second, I don’t normally talk much about Ella’s ADHD other than when she was first diagnosed for many reasons but the biggest one being that it is her story to tell, not mine. I don’t want to talk about it in every post I write or get page views by writing about it because for the most part, we don’t see her as having a disability.

As it pertains to public school, my daughter is viewed as a female having a condition called ADHD (more on that later) but at home, she is just Ellie; our nine-year old daughter who loves to draw and paint with stunning detail, who loves to ride horses and someday wants to own a horse farm, who taught herself to do back flips on the trampoline in the backyard, who loves to go to Starbucks and get a cake pop with her big sister, who loves her dog so much that she asks about his day on the ride home from school. She is the most loving person I have ever known, even while she has been on the receiving end of some very unloving responses from other human beings.

But since being diagnosed, we have noticed that because it is a silent disability (meaning no one would know it if they walked past her at Target), it is up to us as parents to educate the people around us. There is much more awareness for Autism than there is for ADHD and because it is a disability with subtle differences that most people can’t recognize, it has become almost taboo for anyone to talk about. Which is shocking to me since in most 30 child classrooms today, 1-3 children in that classroom has ADHD.  Source: ADDitude Magazine: ADHD By The Numbers

 

So let’s get some basic stuff out-of-the-way:

  • ADHD isn’t due to bad parenting. I have been a parent for over 17 years and I have seen bad parenting and none of those children had ADHD. ADHD is fucking hard. I have had to work harder parenting Ella than I ever had to parent Anna and I have worked hard parenting Anna. 
  • ADHD isn’t caused by things like candy, red dye #3, or sugar. Those things may make a child’s symptoms worse and by cutting them out, they may notice relief. For example, Ella hasn’t had a fruit chew other than the vitamins she takes daily or the fruit chews without food dye, since she was a toddler. I noticed that after she would eat them, she became easily irritated and more hyper than usual. I linked the two and stopped letting her have them, simple as that.  I also linked ant traps we would occasionally have in our home during warm months to occasional bursts in abnormal behavior when she was a toddler.  You do what you do. But did they cause her ADHD? No.

So let’s revisit the spanking meme as much as I hate it, because it really needs to be addressed. I honestly believe that you don’t know it until you live it and for those of us who live it, it is our responsibility to educate those who do not.

In my day, we did have ADHD. In fact, it has been recognized since the late 1700’s. We are evolving beings and with every generation, we learn more, we have more research and we grow. That is the beauty of being a human, isn’t it? So when someone would make a statement like, in my day we didn’t have ADHD, I used to turn the other cheek. But for my daughter and every other child who has ADHD, we are doing them a huge disservice. Yes, we did have ADHD in our day, but we weren’t as evolved as we are now.

Remember the kids who couldn’t sit still? Got in trouble for making noises in class? How about the children who were always made to sit by the teacher’s desk? Remember the “class clown” who would get sent to the principal’s office for goofing off? How about the girl who got yelled at in front of everyone because she wasn’t paying attention to what the teacher was saying? The ones who would eventually be slumped in the back row tuning out the teacher, who everyone thought was a rebel? Possibly burdened down with years of principal’s visits, low grades, humiliation in front of their peers that they simply gave up.

As I write this, I can see their faces and remember their names. A lot of those people ended up thriving after high school. Which completely shocked the hell out of me once I got Facebook but it doesn’t surprise me now. Not any more. ADHD was alive and well in my little rural Ohio school system and it was in yours too.

 

School is hard enough but add in a learning disability and it can be downright painful, physically and emotionally. We have had amazing teachers and we have had not so amazing teachers. It has been a learning process for not only Ella but us as well. I had no idea what a 504 plan (a plan to help Ella with things like sitting at the front of the class or giving her extra time on tests) or what an IEP plan (a more individualized and detailed plan that Ella is not qualified for) was.

The summer before first grade, we found out that she got a teacher that my oldest daughter had for kindergarten seven years earlier. I loved this teacher the first time around, we were friends on Facebook, and I was thrilled when Ella got her as a teacher. By the end of the year, I had unfriended her on Facebook, could barely look at her at conferences and now don’t even talk when we pass in the halls. Why? She wasn’t the same teacher because my daughters are different. Let me say, that I don’t give her teachers a hard time. But in first grade, Ella didn’t have a 504, her teacher had 25 six and seven-year old’s packed into a classroom and Ella was trying out medication for the first time. It was a really bad combination with little or no support from her end.

I can remember sobbing with my friend Jackie in a local park, when she told me that Ella shouldn’t have to go through what she was going through and that we needed a 504. She sent me a template for an email to fill in Mad Libs style to send to the principal and after a few weeks of back and forth, it was decided that Ella was indeed more than qualified. I remember sitting in the 504 meeting room bawling (yet again) because I realized all the things she was going to get in second grade that she didn’t get in first. It is still a struggle to this day and every year, and though it seems to be getting a bit better, there are ebbs and flows.

By the way, for those reading who do have a 504 plan or an IEP, you need to tell your teachers your child has one every year. We assumed (wrongly) that they knew when they got their class lists. With privacy being at an all time high at schools, teachers are not allowed to share anything with other teachers. Ella’s third grade teacher had no idea she had a 504 or ADHD until November of the school year.

I know.

In May of last year, I had an aide tell me that her teacher was so frustrated with her the first part of the year and when she found out she had ADHD, it obviously changed how she taught her and perceived her. I will never let this slip again and neither should you. Your first email needs to be Hello, my child has INSERT DISABILITY HERE and I am here if you need anything. Please email me with any concerns or questions.

Parents fuck up. It happens. Don’t carry that guilt.

 

 

 

 

 

 

This is the first year that Ella has true friends. She has three girls who have come regularly to our home or her to their home and play well together, have sleepovers, go to each others events. She even has one best friend whom she sees three times plus a week, have sleepovers with and go places together.

It hasn’t always been this easy.

Friendships are hard enough (especially with girls) but when you are emotionally two years or more behind your age group, man is it painful.

I realize that it will get harder as she gets older and the gap in emotional age widens, but we are enjoying watching her thrive for the time being.

 

 

 

 

She isn’t on the same page as everyone else, because her brain is a little different (not good or bad) than her peers. We were told at her diagnosis meeting that she had an emotional age of 4 at that time. Her true age was 6. It was crushing to hear that but at the same time, it made complete sense to us.

She wasn’t close to reading at the end of kindergarten; she struggled to buckle herself up in her car seat.

She couldn’t pump her legs on the swing independently until last year, she learned to ride a bike without training wheels a good two years after her friends were. She still doesn’t know her phone number (after practicing at home over and over), and she just learned to tie her shoes at the end of third grade.

Do we care? No. She won’t have to say when she did all of these things on her college applications and it will get easier as she grows older.

But if you know of a child who isn’t doing things at an age they should be? Please don’t call them out on it. I have seen grown adults try to make Ella feel like there was something wrong with her for not being able to do the above.

It isn’t laziness, it isn’t stubbornness, it is literally impossible for them to do.

By the way, if you have a child who is struggling with shoe-tying, watch this video. This is how Ella learned:

 

 

amen:

Ella lacks an inner voice. It is pretty typical of kids with ADHD so we weren’t surprised when she couldn’t talk herself down from things or reason with herself independently. Add in her additional diagnosis of anxiety, and it makes things even harder.

Kids with ADHD almost never have just ADHD; there is always a “side dish” as I like to call it. Maybe it’s ODD (Oppositional Defiant Disorder), or it could be OCD (Obsessive Compulsive Disorder). Many have Anxiety, others have Autism.

Because of her ADHD and anxiety, we have chosen to medicate. We didn’t medicate until a full year after the diagnosis per our psychologist because we wanted to see how she did when she went into a full day school scenario in first grade. Half way through the year, the teacher said she was struggling with school and interpersonal relationships. We talked to our pediatrician about the best fit for her and started medication for the first time in February of 2015. I came home from that appointment, went into my bathroom and sobbed (ADHD makes you cry a lot). It wasn’t an easy decision, I didn’t “drug” my kid to make my life easier, we chose to try to find something to help fill in the gaps in her brain. Something that would make life easier for her at school. It wasn’t a snap decision and it was by no means, easy.

She has tried over four different medications because unfortunately it is trial and error. Some gave her horrible side effects, some kept her awake until midnight, some made her a zombie. She has been on her current medication since January of 2016 and it works…..for now. But we know that eventually she will outgrow this current situation and we will need to re-evaluate.

Medication is a huge debate but it shouldn’t be. Do we give diabetes patients a hard time when they need insulin? What about if you had high blood pressure or depression? I take medicine that helps me with vertigo and migraines, does that mean I am taking the “easy way out”? We need to stop making families with children who have illnesses, physical or mental in nature, feel bad for their choices. Because at the end of the day, they are only trying to make their children’s lives a little easier for the child, not the parent. It stopped being about me the day she was diagnosed and I am sure most parents who have kids with special needs feel the same way.

 

You definitely need a tribe when your child has a disability but at times it has been difficult to find. I follow a few ADHD support groups on Facebook and they are wonderful for many reasons, but I have yet to meet someone in my local area who I can commiserate with. I think it’s safe to say that I am afraid to put it out there because I don’t want to alienate my daughter. One of her teachers aides told me (in addition to the school social worker) that I should start a support group but I don’t know where to begin. It’s this taboo subject which honestly, I realize is ridiculous. It’s not like I am telling the world my child has an STD but there is deep hesitation when I think about starting a Facebook group in my local area for parents of children with ADHD.

I have a few friends who “get” Ella and my parents are great with her as well but we have had moments with adults that weren’t so pleasant. Know your tribe, not everyone is going to love your child like you do.

If you know of a loved one who has ADHD, get educated because we need you for many things. Support, unconditional love, guidance and understanding. You can’t do any of that without being educated about what your friend or family member is going through. If you can’t find the tribe, be the tribe.

 

 

At the writing of this, my husband has been Ella’s soccer coach for two years, with me being an assistant coach on her first soccer team.  I am also one of the coaches for her Girls on the Run team. We are involved for many reasons and we love being involved but the main one is that we are our daughter’s voice. I realize this won’t always be the case in her life but for now, when she isn’t able to voice her issues for herself, we need to be that voice. When she can’t pay attention to directions, we are there to re-direct her in a way that we know works. If she gets labeled “the bad kid” on her team because she wasn’t listening or laughing at an inappropriate moment and gets treated as such, she won’t have a good experience. We don’t want her to judge soccer based on her being labeled. Do we let her get away with bad behavior? Nope. In fact, I would say we might even be harder on her because we are her parents but for now, we need to be the eyes and ears while we can. Plus, it really is a lot of fun to be a coach.

By the way, we don’t let her get away with everything at home either. I had someone ask me if it was hard to punish her because you don’t know if it’s the ADHD or the anxiety or both and can you really punish your kid if it’s just their brain being different?

The answer is this: we don’t want our kids to grow up to be assholes.

So is it hard to know what is bad behavior and what is her brain being different? Yes. But we don’t enable Ella because life won’t enable Ella and we need to teach her that while, yes she has ADHD and she will always have to work harder than her neuro-typical peers, that in no way permits her to act however she pleases. There are rules, there are consequences and there are punishments.

 

 

 

 

 

ADHD isn’t cheap. Therapy for Ella isn’t covered on our insurance plan until you reach a certain astronomical amount. We have spent money that we don’t have on social skills camps, occupational therapy, behavioral therapy, over the past five years. In fact, one summer we couldn’t afford to go on a family vacation because we opted to put her in an expensive summer long bi-weekly social skills camp. In fact, we have a lot of medical debt accrued from hours of therapy, etc. that we are still paying for even though we saw no difference being made and are no longer going. The bottom line is that medical care for mental illness needs to be more accessible and as affordable as going in for a strep test. When you have to forgo basic needs to pay for your child’s therapy, there is something fundamentally wrong with that system.

She is in really great company.

Simone Biles, Sir Richard Branson, Jim Carrey, Katherine Ellison, Cammi Granato, Mariette Hartley, Christopher Knight (Peter Brady), Jennifer Lawson (The Bloggess), Adam Levine, Howie Mandel, Audra McDonald, Ty Pennington, Michael Phelps, Channing Tatum, Henry Winkler, Solange Knowles, Justin Timberlake, Albert Einstein.

To name a few.

For more information about ADHD, here are a couple of places I love to visit:

Honestly ADHD 

 

We don’t change. We take the gravel and the shell and we make a pearl. And we help other people to change so they can see more kinds of beauty.

-Pink in a speech to her daughter at the 2017 Video Music Awards


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18 thoughts on “What ADHD Really Looks Like

  1. Lisa Noel

    Ah, it’s always hard to read these posts that I pretty much could have written myself (or have written similar). It hurts to know people who otherwise are called friends, judge our kids or families because something that makes them who they are. There are so many struggles that come with ADHD but there are so many gifts too!!
    I know every kid is different and I’m sure even more differences in boys and girls, and I’m no expert except that I’ve been there too, but know that I’m always just a text/message away if you ever need to talk or get together. Because as much as the judgement can hurt, time with someone who gets it can be sooo healing!!!! <3 <3

    1. Kari Post author

      Oh friend, I totally forgot that you are going through this as well!
      We really need to get together soon and vent over cheesecake in a cup.
      My treat. 🙂

  2. Jenn

    I so get this. My girlie was diagnosed with ADHD/Anxiety last spring. Guess what – so was I!
    *shocked/notshocked*

    Hers really IS a silent disease because she is SO damned good at masking it AND her grades are excellent, so her teachers wouldn’t know – if she hadn’t emailed most of them personally over the first week of school to tell them, in relation to a question/request she had (“I have ADHD and i’m forgetting my folder and you said we had to have a folder with brads, but I’d really like to put my folder in my zippered binder because I’m freaking out I’m going to forget it.”)

    She’s a weird mix of hyper-responsible (see above)/super forgetful/hyperfocused/squirrel/outgoing/anxious and she is a perfectionist who sees things in black and white so she doesn’t bend where she could. There has been a LOT of anxiety and yelling in the house over the past 6 weeks because moving to middle school has kicked her ass (and mine) – even as she rocks every single class. Making the request for a 504 as we speak.

    1. Kari Post author

      I didn’t mention that Ella’s is genetic….shocker! I was never diagnosed nor was my husband but we both have ADHD tendencies and I have anxiety. Poor thing, she didn’t stand a chance.

      But I am so glad I wrote this because I had no idea your daughter had it! It is SO nice to find other parents in this storm.

      Ella is pretty much the same way; in fact, a lot of her friends parents (who know) have been shocked when I told them. She is good at masking it too.

      Sending you love and good luck with the 504! FIGHT FOR IT!

  3. Jeanette Nyberg

    Oh, goodness. I am crying right now. This is so beautifully written, and I resonate with so many of the things you say here. I haven’t really found a group I like on FB, so reading this is incredibly helpful. Like, you don’t know how helpful. Thank you, thank you, thank you, and let me know when you start that support group. <3

    1. Kari Post author

      I LOVE YOU.

      Also, I feel like we could start a small Facebook group and add in friends and so on.
      Make it a safe and loving space?

      And I am here if you ever need to talk. 🙂

  4. Rita

    I know a thing or 500 about parenting a non-neurotypical kid, and you’ve pretty much nailed it. And I’ve parented kids who are typical and you are right: the hard of parenting a child with that kind of disability is nothing like the other kind of hard. I’m guessing you rarely get judgment from parents who’ve walked in similar shoes–because we all know. We know there’s no one right way. We know how how exhausting it can be. We know you’re never gonna be perfect in it. Just want you to know that I know. And speaking from my teacher perspective: Yes on the clear and frequent communication. Teachers are overwhelmed, and they don’t often get info they need (for all kinds of reasons). I always appreciated communication from parents when I was in the classroom. I know we should always see all kids for the unique individuals that they are and work to meet their individual needs, but when you’ve got 35+ in the room, that’s hard. It helps to know why someone is doing what they’re doing. Finally, I totally agree that we’ve always had kids whose brains don’t work like we think they should. I haven’t seen too many of the ones I knew end up as successful adults. Quite a few self-medicated and continue to do so. They’ve had hard lives. People who share belt memes are either a) ignorant; b) lucky (because they’ve obviously never had a similar challenge; c) assholes; or d) all of the above. Sending all of you love and understanding.
    Rita recently posted…Bad teeth, bad dogs, bad weeks. And Puerto Rico.My Profile

    1. Kari Post author

      I love your perspective because it comes from a friend, someone who has been there and a teacher. So it means so very much to me.
      I feel like maybe I should have re-written the first grade teacher part because it does sound a little harsh on my end but then I decided to keep it in because that is reality.
      I have learned greater appreciation for teachers with having Ella. Anna glided through the system and I really had no true appreciation for what they do all day long. But with having Ella and seeing what she is going through, it opened my eyes to how many children have disabilities in school and how these teachers are overwhelmed at times but still making a huge difference in Ella’s life.
      So maybe it is a blessing, a life lesson etc. for Ella to have ADHD. We’ve been trying to make sense of it for the past almost four years.
      All I know is that I am glad I surround myself with people who love her, love us and have compassion.

      1. Rita

        I didn’t take any offense at the first grade teacher part. That is reality, and we need a whole lot more grounding in reality about all kinds of things (imo). I listened to a conversation at school yesterday about a student with a disability that made me cringe. Teachers are human, some better than others. And I’ll say that having the children I’ve had both revolutionized and radicalized me as an educator. When I think of how I approached some of my students early in my career, that makes me cringe, too. Hard. I wish I could go back in time and have a do-over. I just didn’t understand then what I do now.
        Rita recently posted…Bad teeth, bad dogs, bad weeks. And Puerto Rico.My Profile

        1. Kari Post author

          It’s a journey, this life we live. I am sure when I was younger I was less sympathetic towards certain things then than I am now.
          But you understand it NOW and that is what is important. I am so glad to know that there are more teachers like you out there. 🙂

  5. Jen Roberts

    Great post. Our kiddo has an IEP and it did wonderful things in school. As a parent I still struggle with some of his behaviors. I hate when I hear the “bad parenting “ comment. Look at so many families with multiple kids and only one has behavioral issues. They were all raised by the same people!

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