Ellie Land: Population one.
It’s difficult to explain what it’s like to have a child with ADD to someone who has never experienced it first hand.
“Oh, it takes my daughter forever to put on her shoes and socks too. That doesn’t mean she has ADD. That’s just kids, dude.”
What my friends don’t realize is that I’m talking about the literal forever. I could tell my daughter to put on her shoes and socks and come back three years later to find her skeleton sitting in the same spot as when I left, probably staring out the window, her bare little skeleton feet still uncovered. And I promise you her dying thought wouldn’t be, “Wow, I’m really thirsty.” It would be, “Awww! I was almost finished looking at the leaves on that tree.”
“Don’t worry – my kid zones out during her softball games too. I think she spends half the time picking dandelions in the outfield!”
Ummm… k. But how many times have parents complained that your kid is scaring the shit out of their kid because she keeps sneaking up behind them playing “lion’s gonna getcha!” the whole time they’re in the field? And that’s when I’m not fishing her out of the tree in the woods behind the back stop every time it’s her turn to bat.
Getting to this point – understanding why she can write and illustrate a novella but goes deer in headlights when asked 2+2 – has been the scariest, most stressful and frustrating experience of my life.
It all started when I enrolled her in a little pre-school class at 18 months old.
“Have you ever noticed that Ellie sort of… spaces out a lot?” Her teacher asked me one day. “Just sort of… goes away… and sometimes it takes a lot of effort to bring her back?”
“Ummm, yes?” I lied. Not realizing your child was going on regular mental vacations seemed like something a bad parent would do.
What I HAD noticed was that I had a one-year-old, a five-month-old and had just found out that I was pregnant with baby #3. Every night when I put them to bed no one was more surprised than me that I had kept everyone alive to see another day. I already felt guilty that I was failing her and this observation from her teacher, that I OBVIOUSLY should have noticed, sent me into a bit of a tailspin.
Like any good parent I immediately internalized it. I didn’t know what “it” was, but I decided “it” was something, “it” was bad and “it” was definitely my fault.
“It” was because I didn’t give her enough one-on-one time. Because I didn’t make her baby food from organic vegetables. Because I had a glass of wine at my friend’s wedding when I was pregnant with her. Because after she was born I was working from home and I put her in front of cartoons whenever I had a conference call.
“Let’s just keep an eye on it,” she said. “It’s probably nothing.”
“It” was something.
“We’re confused about Ellie,” her teachers always started out, like they were reading from the same script. “Some days she comes in, knows exactly what’s going on and breezes through whatever we’re doing. But some days she comes in and looks around like she’s never been here before. She doesn’t know where to put her coat, and when we do letters or counting she looks at us like we’re speaking a different language.” Then they would pause, “But boy is she ever imaginative! Look at this picture she drew!”
The spring before Kindergarten, her teachers recommended we have her screened. For what I wasn’t sure, and neither were they. A 3-hour evaluation where I sat on the other side of a curtained partition overhearing whispers like “above average”, “fine”, “unnecessary” and “why did they send her again?”.
I left with a “within normal range” slip in my hand, feeling humiliated, like I had fabricated some sort of problem. It was all in my head.
Aside from the fact that I was a complete psycho, everything was fine.
I breathed easy until.
That fall she started Kindergarten and soon afterward I got the letter: “Based on assessments and recommendations, your child is available for additional services…”
The room spun and my stomach dropped. I realized I liked it better when I was a crazy person. And thus began the roller coaster of inconsistency I was strapped in to for the next two years.
The roller coaster of inconsistency is feeling like you have failed when you get a letter home that your 5-year-old qualifies for special math and writing services. It makes you feel like a deranged lunatic when you take a little girl in for screening who flies through all the tests. It’s feeling panicked when her teachers tell you over and over that they have “major concerns about her attention.” It’s feeling embarrassed when the school counselor tells you she is “Fine. Let her be six.” It’s a little girl who one day breezes through her homework and the next day sobs because she doesn’t understand. It’s your friends telling you all kids do the same things that make you want to beat your head against the wall. It’s reading books that tell you without medication your child will develop self esteem issues that will manifest into things like drugs and promiscuity. It’s horror stories of parents who gave their child medication it and turned them into zombies, killing everything that made them creative and amazing.
Hang on just a sec – BRB.
To be honest, the idea that what was going on had something to do with ADD was not immediately obvious. It wasn’t until her first grade teacher used the word ‘attention’ that a light bulb went off and I began to read up on ADD. Until then I had associated it with squirmy little boys who can’t sit still. The fact that it often presents differently in girls (and boys, as well) was news to me, but it was like the books I read were written exclusively about her. The daydreaming. The struggles with math and spelling. The difficulty with picking up on social cues from her friends and acting overly silly. The Tony-worthy pretend play. The imagination that writers would kill for.
In a perfect world, my daughter would spend all day in what we’ve come to affectionately call “Ellie Land”. Daydreaming about fairies and flavors of ice cream and god knows what else. But we had to be realistic, and the reality is that she’s gonna need to get the hell out of our house someday and that will require a basic understanding of math.
Also, Ellie Land doesn’t work out so great in the classroom. A little over a year ago my normally happy, carefree little girl came home from school and burst into tears.
“I don’t understand what’s going on at school,” she sobbed. “My teacher thinks it’s because I’m not paying attention but I am. It’s just that my brain keeps interrupting what she tells me.”
It was then that I realized that she was the only one I really needed to be listening to all along.
We started with weekly math and spelling tutoring sessions with an amazing woman who is fluent in speaking Ellie. We cut out the majority of dyes, sugar and have an early bed time. She sits in the front row of class and her teacher is wonderful about discreetly “bringing her back” without making it a deal. We made an appointment with a child psychiatrist who specializes in ADD for an official evaluation and diagnosis, and continue to see her monthly. And, this year we began medication.
My hands shook as I gave her the first pill, moments later checking her pupils. “How do you feel? Are you seeing spots, or having any difficulty breathing?” I asked, every thirty seconds pulling her lips back to check her gums for bleeding.
Like many people, I was terrified medication was going to change her. Take away her sparkle. Make her – gasp – ordinary. Images of the hamburger grinder in The Wall kept popping into my head.
And she has changed. We’re learning as we go, far from figuring “it” out completely, but we are in such a good spot right now. She is able to harness those creative thoughts that used to buzz aimlessly around in her head and organize them into constructive ideas. Her bed is surrounded by “Invention Journals” filled with sketches of prototypes. She’s written and illustrated several books. She designs board games out of discarded items like egg cartons and shoe boxes. She doesn’t love math but she’s doing great in school and no longer needs any special services.
Her “Sparkly Brain” has become an honorary member of our family, and we love it. It makes us laugh. It makes us frustrated. And someday she is going to use it to change the world.
A few weeks ago I was sitting at the dining room table with my husband after dinner.
“She’s going to be fine,” he said. “I was a bluebird, you know.”
“What’s a bluebird?”
“The ‘special’ reading group,” he said, using air quotes. “I couldn’t read to save my life until, like, med school. In fact, I’m pretty sure I have ADD so she probably gets it from me.”
“Holy crap,” I said, slamming my palm down on the table. It suddenly all made so much sense. “You’re right. But you know what? That information would have been helpful, like THREE YEARS AGO WHEN I WAS BEATING MYSELF UP FOR SCREWING UP OUR KID!”
“Yeah you’re right,” he said, nonchalantly taking a sip of his wine. “I just didn’t really think about it until now.”
“Ssssh,” I said, patting his hand. “It’s okay. Just go back to Nick Land. I hear it’s beautiful there.”
So glad that the meds are working out for you! I hope they continue to do so. Our son has ADHD mixed with anxiety and starting meds was an insanely hard decision for us. We’ve been working our way through different meds since August and still haven’t found the magic pill. There may not be one. The stuff about the imaginative play rings really true in our life. He’s always in his own head in some amazing fantasy world. Thanks for sharing your story!
Thanks! I hope you find something that works! Our doctor started outlining all of the options and my head was swimming – there are dozens. Hang in there!
I am really praying that a year or two from now I can say the same thing about both my middle boys. My Eddie(as I’ve always affectionately called him) is on the autism spectrum, has ADHD, and anxiety(all stemming from symptoms on the spectrum). After many sleepless nights and fights with my ex husband, we started him on Adderall, it worked wonders and eventually we moved to XR capsules to help him more throughout the day. He’s still the same kid, as happy as ever because (in his words), “I can stop my arms and legs from dancing if I’m tired”. My other little guy, not so much, we are currently in the process of switching to, yet another stimulant medication. We started, the same as his brother, on Adderall. It worked ok for about 14 months, then, if you looked in his vocabulary book from September to present day, you could physically see his medicines effectiveness slowing and eventually stopping. Then the notes started coming. Of course the teachers concerned but the school still has him in regular classes and he seems as if he’s slowly slipping down a slide and I can’t get him to stop never mind getting him to come back up. Since then, all any of the medicines have done is give him unending side effects. He seems like he has no care about anything, is waiting for his appointment with a therapist but I am out of ideas and slowly running out of patience. 🙁 hopefully one day, they will try a non stimulant and see if that works because I’m so lost right now. So Sorry for writing a book instead of a comment.
Thank you for sharing. This is really important. I’m a neuroscientist studying the brain. This stuff is REAL. We see it in the brain. And anyone who tells you it isn’t, is off in their own makebelief land. It’s so much harder to figure out in girls, because it does indeed look different. And like with so many other diseases and drug trials, girls have been left behind by the scientists. Luckily, it is a trend that is now beginning to change. She WILL be fine, now that you’re helping her. It’s one of those things – traits that conferred a lot of advantages from an evolutionary perspective (think novel ways to hunt / gather :), that don’t translate well to our modern society where learning is supposed to happen on a chair in front of a table, following a specific script. I once read about an adult who “cured” his ADHD simply by moving from an office job, to onsite construction jobs (he was obsessed with building). In reality, of course, it wasn’t a “cure”, it was a harnessing of his special talents 🙂 So, again, thanks for sharing, and for explaining it so well!!
Wow – that is fascinating! And yes – I definitely think that finding a career path that jives with your brain tendencies is so crucial! Thank you for your comment.
Thank you for your post, I really needed it today! Similar to the last comment, my son had ADHD combination with anxiety and he has not reacted well to medications so far, and we are on our third now. I was really beating myself up today as to what else I can do to help him. But your post made me think that I am doing my best and I just have to keep doing it. Thanks for sharing!
Okay – you just brought tears to my eyes! That comment is exactly what I needed to hear to justify posting this. Thank you. And I hope you find something that works!
Thanks for this! My son will be 21 next week and this started for us in 2nd grade. It has been a journey but once we understood it, everything has been great. I only wish I had been able to read something like this that said I wasn’t a monster for giving him medication and that (the first 2 years of school) he had teachers that didn’t throw up their hands and call me at work everyday to tell me I needed to do something about his behavior. He is graduating college in May, having gone all the way through on scholarships (cheer, jazz band and vocal) and I could not be any prouder of this kid!
Wow – I feel like 15 years ago this stuff was way less understood and way more stigmatized so hats off to you for sticking with it (and him) and not giving up. Congrats on his upcoming graduation!!!
Thank you so much for writing and sending this post out into the world! I do not know you, but a mutual friend shared this post. It has blessed me today. I am sitting here with tears after reading this. I have experienced some very similar experiences with my son. I’m even a special education teacher who knew what it was and what steps to take next – with a lot of prodding from colleagues (because I still didn’t want to accept that I couldn’t fix it myself). My son also has dyslexia, but, thankfully, he had access to a wonderful program at a young age and it changed his life for the better. We, too, waded through the medication until we found what truly works for him, and he has been knocking my socks off ever since. Your description of her bedroom matches my son’s room as well – an amazing plethora of sketches and plans and stories. Your acceptance and celebration of your child is beautiful – that is something that will forever better her world! She is blessed you’re her momma! Thanks again for putting this out there. 🙂
I cannot tell you how much this resonated with me. My oldest, (in kindergarten, a girl) was just diagnosed with ADHD and this post could have been about her. I also have 3 girls (my youngest are twins… lord help us all) and love love love your blog. Thank you!!
My 8 year old daughter was just diagnosed with ADD, too. It’s so scary, but at the same time such a relief to be able to name it and finally be able to address it. Good for you guys for being willing to listen to the teachers and doctors and get her the help she needed. Parenting is definitely the most difficult job in the world!
Oh my God, that paragraph about the shoes and the skeleton was so funny, Hannah. (and relatable, bc my son is the same way.) When you have a kid with ADHD you HAVE to laugh or you will cry. It’s great that you have an understanding of it so early in her life. Our current challenge, is that cell phones and social media are absolutely crippling to someone with ADHD. My son would lay in his bed making brilliantly funny responses to his friends’ texts, and sending snapchats indefinitely until the world ended, unless I intervened. My advice to parents of kids with ADHD is to delay getting them a cell phone as long as possible, and when it becomes necessary, put limits on it with a device like Circle, which connects to your router and automatically shuts down her wifi after a preset time limit.
Ditto to all the above. I have a kid with ADHD too, and so admire your humor and resilience in managing this process ( with two other kids no less!) Also, in the next couple of years, you may want your kid to be assessed for giftedness. Even though a professional organizer working with my kid at age 4 used the term gifted, I guffawed. Her development was so uneven, I thought it was some euphemism like “special” or “exceptional”. Fast forward 3 years and we learned , yes, our kid is intellectually gifted but has ADHD along with dysgraphia, poor spelling and difficulty memorizing math facts. It’s a long road, but with medication in combination with both remediation and enrichment, she has grown into a very cool, well-adjusted kid- but still infuriating about getting herself together in the morning! Best of luck on your journey…
A big, fat good-for-you for getting her diagnosed and medicated. We didn’t catch my daughter’s inattentive ADHD until 6th grade when she started middle school at completely fell apart. It’s such a tricky thing to see in girls. Finding the appropriate medication and working with the school to get accommodations have made all the difference. Well done mama.
Libos from a SEMO sister. 🙂
So glad to see that you published this. It makes me take a deep breath and go ‘aaahhhhh.’ Our son was balls to the wall hyperactive in grade school, he could not be still. He made his teachers crazy. His first grade teacher, who adored him, told me that in 26 years of teaching, she had never met another child as hyper as he was. Let’s take a moment to FEEL THAT. I crumbled. On the inside. And then did a shit-ton of my own research of what could help him learn. The next few years took all of our energies, keeping him on task. Math homework took all night. Eating dinner took all night. We called him ‘our little electron’ because when we would stand and talk with another adult, he would ring around us, walking in circles, until we were done. He could NOT be still. Fortunately, we had a few exceptional teachers along the way (not all, sadly. Had some duds.) that were encouraging and helped, so much. Every year I thought, it’s gotta get better or we’ll do meds. And finally, it did get better. We didn’t wind up using meds, although I would have. Maybe we should have. But I can tell you, we don’t sit there doing homework together anymore, he doesn’t run in circles, he has friends, he’s very successful and handsome, his room is quite tidy, and I think he probably won’t be living in our basement when he’s 30. Fingers crossed. Thanks again for your courage. You are SO not alone.
Wow! This story sounds so very, very familiar. You could be describing either of my sons, now ages 14 and 16, both of whom are diagnosed with inattentive ADD. I, too, experienced the crazy-making back and forth of “you know your kid has a serious attention issue” (one teacher told me my oldest was consistently the last kid off the rug, and usually only made it to his seat because other kids would come shake him) to evaluators who found him intelligent, eloquent and capable. Dear lord, which is it?! I’m also very familiar with the cycle of guilt and constant questioning that comes along with this back and forth (not enough food? right kind of food? breastfeeding? ear infections? on and on and on… it had to be MY fault somehow). Then it all started again with son #2 and that’s when I got a bit wiser to the cycle. I know part of the issue is not only that the girls may manifest differently but that not all ADD looks the same. I have nothing concrete to go on but I suspect that inattentive ADD can be a fairly different disorder and is often not treated as such. Both my sons exhibited your daughter’s characteristics (or symptoms, however you look at it) almost to the word. I will say that we did medications with both of them and, while they worked, they helped a lot – I believe my oldest said it was like he had gotten glasses and could suddenly see and hear clearer than before. Eventually the meds seemed to not help quite as much and, given that they were both doing well academically, we stopped. I’m happy to say that at the moment both are doing well and seem to be engaged and happy. Thank you so much for this story. This struggle can be very hard to understand for folks outside of it and it has always been for the grace of friends going through similar things that I have been able to survive.
Worry, minimize, feel guilty, question self and one’s own sanity, feel guilty some more…rinse and repeat. THANK YOU FOR HELPING US BREAK THE CYCLE. This. Is. So. Awesome. Ellie Land is a beautiful place, made more beautiful by the love of a kick ass mom in you.
My daughter was 15 when she was finally diagnosed but our experience is the same, mine just a bit longer to get to the diagnosis. I myself was diagnosed at 47. Finally everything makes sense! It’s a constant trial and error as they grow and hormones get involved but stay the course and stay involved. She’s going to be more than fine, she will soar!