What Does ADHD Mean?

What does ADHD mean?

If you Google ADHD, you will learn that the acronym stands for Attention Deficit Hyperactivity Disorder and you will read about distractibility, hyperactivity, and impulsivity.

If you go to a medical professional for answers, chances are you will be given pamphlets, and told of medications that might help.

Educators and friends might tell you that ADHD is way over-diagnosed, and often a parent’s made-up excuse for a child who is undisciplined at home.

The best place to go for a true understanding of ADHD is into the home of a family who lives with it. My twelve-year-old daughter has ADHD. I’d like to tell you what ADHD is like for us.

For my daughter, ADHD means waking up in the morning with no desire to linger in bed or stretch and rub her eyes. ADHD means waking up in the morning and jumping out of bed, eyes wide open, and ready to run a race. ADHD means she believes everyone in the house should also be up and ready to run beside her. ADHD does not believe in sleeping in.

ADHD means she might forget to take her pajamas off before she pulls her clothes on. Or she might remember to pull the pajamas off and forget to put the clothes on.

ADHD means not being able to sit still long enough to eat a bowl of cereal, tie her shoes, or even go to the bathroom.

ADHD means she strives to fill every moment with noise and movement. If she runs out of things to say, then she will sing, bark, moo, or even cluck like a chicken. There is no room for calm or silence.

ADHD means playing too rough, spilling things, breaking things, knocking things over, and constant apologies. But then repeating what she just apologized for.

ADHD means never knowing what page the teacher is on, and wondering how the other kids always seem to know.

ADHD means she asks half a dozen questions in rapid succession but never waits for an answer, because she cannot stop her mind from wandering from one topic to the next.

ADHD means she forgets to bring her homework home every single night.

ADHD means she is often distracted from the task at hand by things the rest of us do not even notice: a squeaky chair, a dripping faucet, the flicker of a light, a voice in the hall, a movement across the room, or a dog barking outside.

ADHD means that other kids avoid her because she is a lot of work to be around.

For me, ADHD has meant constant interruptions, visual schedules and reminders, going over the rules repeatedly, hoping this time she will remember, while knowing she probably will not. 

ADHD has meant I have to model a quiet voice and talk often about volume. ADHD does not believe in whispering.

ADHD has meant pulling the car over to put my child back into her seatbelt, holding on tight to her hand when we go out in public, and constant reminders about safety.

ADHD has meant awkward explanations to family, friends, and acquaintances for my daughter’s behavior.

ADHD has meant medications that were hard to afford, but even harder NOT to afford. And getting those meds into her mouth as soon as possible in the morning.

ADHD has meant dreading the first hour of the day and watching the clock, waiting for the meds to kick in. Then, indescribable relief when they do, because my daughter is going to be able to organize her thoughts, have real conversations, follow multistep instructions, and learn for the next few hours. And there will be bouts of quiet. Oh how I used to take quiet for granted. 

ADHD has meant meetings with teachers and requests for help and understanding. And apologies.

ADHD has meant losing my patience over and over again, and having tremendous feelings of guilt for not being more understanding. 

ADHD has meant lots of giggles, silly misunderstandings, fun games, made up words, a huge imagination that never stops, hugs and back rubs.

ADHD has meant learning to parent differently, realizing that no amount of discipline can fix ADHD. ADHD has helped me to find buckets and buckets of perseverance and compassion I had no idea I had. ADHD means I work harder and longer, knowing that she is worth it all. 

                                (By the way, Riley is a doll.)

If you liked this post, you might also like to read what it is like to go shopping with my little girl. The Air Freshener Incident

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Sydney's Apologies and Insecurities

Sydney was diagnosed years ago with an unnamed anxiety disorder. I see the signs daily, some days being worse than others. There are so many little things I notice about her insecurities. One of the things I wish I could help her with the most is her constant need for reassurance from everyone around her, mainly me. She has to double check and triple check every answered question. It goes something like this: “Can I have this last cookie?” An affirmative answer would mean she will ask again: “Are you sure it’s okay?” I will assure her it is fine. She’ll take the cookie and then comment, probably more than once, about how she hopes it was okay to eat that cookie. It is no fun for her or for me. It gets old.

Sydney and Riley

This morning Sydney asked if she could wear the same shirt she wore yesterday. I said she could as it had been washed the night before and was back in her drawer. It’s a new shirt with a cow on it. After I said she could wear it again she asked, “It’s really okay? I just wore it yesterday.” I said it was okay because it was clean. She said, “Okay, if you are sure.” A few minutes later she came out of her room in a different shirt, not the new one. What shirt she wore made no difference to me but I knew the anxiety of not being SURE it was okay with me is what kept her from wearing the shirt and that is the part I hate for her. So, I tried to talk to her about it, as I sometimes do, knowing it probably will not make a difference of any kind. But I have to try. One of these days something might click.

I grabbed a lotion bottle next to me and a small pill bottle next to it and told Sydney I wanted to put on a play for her. I said, “This lotion is a mom and this little bottle is her little girl.” Sydney giggled and got very interested. I had the small bottle scoot over to the lotion and ask, “Can I go outside and play?” The lotion said, “Yes.” And the little bottle ran “off to play.” Then I said I was going to show her another way it could be done that was not nearly as easy. This time I had the pill bottle ask “Are you sure it is okay?” a couple of different ways after the lotion-mother gave the bottle-child permission to go outside. Each time the mother answered it was okay to go outside. Finally the little bottle ran off to play. Sydney loved the little skit I put on and she loved the attention. I talked to Sydney about how much simpler her life would be if she would just take the answer I gave her the first time and did not ask the same question over and over. I told her the first little girl would get to go out to play sooner and asked if she would rather be the first little girl or the second little girl. I thought maybe I was getting through. Maybe. I asked her, “Do you get it?” She said, “So you want me to ask if I can go outside and play?”  Insert heavy sigh. This is my life. Sydney just cannot connect the dots much of the time.

Sydney, June, 2015

Sydney’s anxiety and insecurity manifests itself in other ways. One of the things I wish she could get past is a constant need to apologize. All day long she apologizes. She uses the word “sorry” more than anyone I know. If she does not hear me and I have to repeat myself she apologizes. If she sneezes and I glance her way she apologizes. If she asks me for a drink and I have to get up to get it she apologizes. If she doesn’t feel well and thinks it might inconvenience me she apologizes. I reassure her all day long. Sometimes I lose my patience from being so patient.

And of course, because Sydney knows that her asking the same question over and over for her own reassurance is something I’d like her to work on, she apologizes now after asking the multiple questions. So after she asks if she can go out to play or wear a certain shirt and gotten permission and reassurance, she’ll then apologize to me for asking so many times. Wow. That little fifty-pound girl walks around with a very heavy burden I’m thinking. I tell her so often there is no need for her to apologize. I tell her that “sorry” only needs to be used when she’s hurt someone or made a big mistake. And now I’ve even somehow got her saying “sorry” for saying “sorry” so much. Being Sydney’s mom is like walking a tightrope. But I’d walk it across the Grand Canyon if I had to because my little girl needs me and I can do this. I will have enough confidence for both of us.

For more about Sydney's diagnosis, see The F in FAS does not stand for Fun.

Glasses, Eye Drops, and Drama

The first time I ever took Tate to an eye doctor for an examination I believe he was still in preschool. It was something the early intervention team wanted us to do. I had no worries about his vision but I wanted him seen by a doctor experienced with kids having autism. Children’s Mercy Hospital assured me they were the one I was seeking and I was very impressed. The Ophthalmologist at Children’s Mercy Hospital agreed with me. Tate was seeing fine. The second time we took Tate, he was in elementary school and was probably in second or third grade. I took him because the school nurse insisted he was not seeing well. I knew (or thought I knew) it was just his inability to understand the test directions and communicate with the school nurse. So we trekked over to Children’s Mercy again to see the pediatric eye doctor. His eyes again tested fine. When Tate was in fifth grade the school nurse failed him on the eye exam again and wanted me to take him back tot he eye doctor. I ignored her. When Tate’s sixth grade teacher and Para both told me Tate was struggling to see I made another appointment, fully expecting to fine nothing wrong with Tate’s vision. As we sat in that exam room and Tate tried to read the letters on the wall across the room I was stunned. The eye doctor asked me if I was sure Tate knew the alphabet. He’s known upper and lower case letters since he was a toddler. I wanted to crawl under the chair while someone made me a sign to wear that said, “BAD PARENT” because I had not known Tate needed glasses to see. He was as blind as a bat. Apparently, if a kid’s eyes are going to “go bad,” they often do it about the fifth grade.

The day Tate got glasses was quite a memorable day for more than one reason. It was snowing so hard that school was cancelled that day and I was going to cancel the appointment. It was a long drive and I did not want to make it. But my husband Shawn insisted he would drive us so we went. Normally if my husband goes to appointments with us he sits in the waiting room and works from his phone. He is a HVAC contractor and does a whole lot of his work on the phone. I asked him to come back with us. I suspected Tate was going to be a little difficult if they tried to put drops in his eyes. Wow. Was I glad Shawn was with us! Tate put up a fight. He did not mean to. He tried so hard to sit still and allow those drops to fall into his eyes but he just could not keep his hands down and his head still or his eyes open and he was thrashing around like a wild man. Tate is strong. He does not have much coordination but he is strong. And he is big. At that time he was over six feet tall. It took a lot of work and a long time to get those drops in Tate’s eyes. Without those drops though, they could not have really prescribed him glasses. Because kids like Tate cannot really go through the lenses and tell an eye doctor if their vision is better or worse, the doctor has to dilate the pupils and then look into the back of the eye and “see” for the patient.

Tate hated those drops so much. I don’t know if it was the stinging eyes, the dilated pupils, the required sunglasses, having to hold his eyes open for the drops, the invasion of his space, or the way his eyes felt for the rest of the day he hated the most. But when I told him a few days ago it was time to see the eye doctor again, it was the drops that became his number one topic of conversation for the next few days. He came up with every excuse in the book, including, “We only go to the eye doctor when it is snowing.” I got texts and his siblings got texts about this injustice. (I've posted his texts below.) He was sure I had made a grave error in scheduling an appointment in July. I promised Tate I would ask the eye doctor if there was any way we could forgo the drops this time. And I did ask but her answer was, “No.” I will insert here that both the doctor and her assistant were so patient and kind. They listened to Tate’s concerns in all his broken language. They waited for him to finish. We received a lot more than our fair share of time. They gave him several options, one of them being he could lie on the floor if he liked when they put the drops in. They worked hard to accommodate him. He chose to sit in the chair and try to do it without anyone holding his hands or head. He also opted to have Sydney go first (Yes. She had not had her eyes checked for about three years there so I had scheduled her too. Of course she was EXCITED to be there!) Sydney did fine as expected. And he did a great job compared to our last visit. He couldn’t keep his eyes open and his eyelids are SRONG. He kept raising his hands to “defend” himself but he tried hard not to. I held his hands down in the end but we got it done without other adults coming in. There were two nurses actually standing in the hall, ready to assist if we needed. He was proud of himself and he has not complained once since it was done! He has thin plastic slip-in sunshades for his glasses from the appointment and he is wearing them like a hot new accessory.  

Tate’s prescription had barely changed. But I got another surprise. Sydney needs glasses. She has always had a problem with her left eye drifting a little when she is tired. I don’t even notice it anymore but Shawn and her siblings do sometimes and they mention it once in a while. That drifting was the main reason I had made the appointment. I wanted the doctor to look at that again. Each time in the past the doctor told me it was not significant enough to treat. She told me that again today. However, now Sydney’s left eye has developed the need for glasses, unrelated to the other problem. The doctor said Sydney is using her right eye, which has almost perfect vision and not using her left eye, which is near-sighted. I have the same thing going on with my eyes and have since I became an adult. I caught myself just as I was about to say, “She gets it from her mama.” Oh yeah…. Ummmm No.  I have no family history on her birth mom’s eyes. Sigh.

So, we left Children’s Mercy and headed to Wal-Mart where we got three pair of glasses, one for Tate and two for Sydney. The total bill for three pair? $150.00 The frames are guaranteed for one year too. No questions asked. For kids under 18 years old, Wal-Mart does this as a service. Like them or hate them for many reasons folks but I like being able to afford the kids’ glasses so easily. I’m so glad a friend told me about their program for kids when Tate needed to get glasses. And of course, Sydney is excited and that will probably last a week. I imagine I will wish I had bought six pair when she starts losing them. 

This was 24 hours before
the dreaded appointment.
For ears? Seriously?
They made a huge
mistake then!!

There's been a huge injustice!
And he's still holding a
grudge about the past
appointment and the snow
day as well. Note:
Tate is always ready to
throw Levi under the bus.
He often tries to shift the
focus. HA!

He's desperate now. This was minutes
before we walked out the door. 

If you happen to be following Tate's photo gallery, he added a few today. While Sydney and I were looking at frames, I caught him out of the corner of my eye taking photos of the rows and rows of glasses. As usual, it's all about uniformity and lines. I added them to the post of his photos when we got home. You can find that here: Tate's photo gallery

And if you are interested in our dental visits then this is the post for you: cleaning, filling, and straightening the teeth of autism

Sydney's lopsided conversations

I tried to document a lot of Sydney’s morning before school today. I haven’t done it in a while and it is always interesting. This was mostly before the medications would have begun to help her slow down and focus. I couldn’t get it all because she talks way faster than I type, but I tried to jot down the highlights. You’ll notice that I do not always respond. I would if she would pause long enough but she does not usually even wait for an answer to a question. She just jumps right to another topic.

In between a lot of these lopsided conversations she was running in circles, opening doors, counting by fives, clapping rhythms with her hands, turning on noisy toys, running in and out of her room, looking in the refrigerator, knocking on the window at the dogs, eating her breakfast, and pestering Tate.

Sydney, first thing this morning: “Mom, Does your jaw hurt?” Me: “Umm, no.” (I have not had any jaw problems…) Sydney: “Well, my shoulder hurts. Do you know why it hurts?” Me: “No.” Sydney: “I know why it hurts. Do you want to know why it hurts? It hurts with a throb.” Me: “Did you sleep on it wrong?” Sydney: “No. I think it is the bone inside of it or the stuff around it.”

Sydney: “Did you take a shower?” Me: “Yes.” Sydney: “I believe you.” My thought bubble: Oh, I’m so glad you think I am credible. Sydney: “I hollered for you and then I hollered, ‘Dad? Dad?’ and all I heard was Levi. Did Levi go to work with Dad?” Me: “Yes.”

Steve and Sydney

Sydney: “I’m so HUNGRY! Can you cut me up an apple and put peanut butter on it? CRUNCHY peanut butter.” Me: “Sure.” Sydney: “Can I feed the dogs?” Me: “Levi already did.” Sydney: “I need to see Steve.” Me: “After breakfast.” Sydney: “I’m not hungry.” Me, handing her the plate with her apple on it: “EAT THIS!” Sydney (like I’m ridiculous and she is patronizing me): “Okay. Okay.”

Sydney: “Did you want me to get up this morning or lay in my bed? ‘Cause I was awake. I checked and Dad’s clock said 7:51 [7:15 actually] but that was running too fast for me.”

Sydney (following me into the laundry room): “Can I push start on the dryer?” Me (throwing clothes into the dryer): “In a minute.” Sydney: “It sounded like there was something clinky in there. Like a penny or something.” Me: “I didn’t hear it.” Sydney: “Maybe I made it up.”

Sydney: “Why did you get me a drink of water with my pills? Now I need to potty!” Sydney from the bathroom: “Mooooooo Moooooooo Mooooooo” Me: “Sydney, please stop mooing from the bathroom.”  Sydney: “Okay Mom! I’m hurrying!” Me: “Take your time. Just stop mooing!” Sydney: “Okay!” There was silence for one minute. Then….. Sydney: “Mooooooo. Moooooo” Moooooooooooo!” My thought bubble: Why couldn’t she have liked turtles best? They are so quiet.

Sydney: “Do you know how humming birds peck at windows? Well I dreamed about humming birds and there was this woodpecker who came to my window and woke me up. I let him in and you got mad at me. You said, ‘I don’t think that is a woodpecker. It is a blah blah blah bird.’ I said, ‘it is a friendly woodpecker’ and you said, ‘it is just an ordinary woodpecker.’” My thought bubble: Even in her dreams I suck all the fun right out of everything. But I’m so confused. Was this story about a humming bird, a woodpecker, or a blah blah blah bird?

Sydney settled on black and white and it turned out great. 

Sydney (picking up a wooden cow): “I really need to paint this cow. He looks naked. I’ll paint him today after math camp. Do you know why I hate going to math camp? It is because of going to my group. ____ is in my group. He looks at me like he is mad at me.” My thought bubble: I cannot imagine why. Sydney: “Should I paint this cow brown like a Brown Swiss or should it maybe be a Holstein?”  Me: “Whatever color you want.” Sydney: “Can I use your paints or my paint?” Me: “You can’t use watercolors. You’ll have to use my paint.” Sydney: “What colors do you have?” Me: “Too many to remember.” Sydney: “I want to make it really colorful. But…. What color is an udder?”

Sydney has had swimmers ear so we’ve got drops from the doctor. I told her we needed to get the drops in her ear before school and she said: “How long do I leave my ear drops in?” Me: “Five or ten minutes.” Sydney: “So, until Nine O Ten?” Me: “No.” Sydney: “Then how long?” Me: “Five or ten minutes.” Sydney: “So when it is Nine O Ten can I get up?” Me: “There is no such thing as Nine O Ten.” Sydney: “What time is it?” Me: “Sydney I don’t know what time it is right now but ten minutes after nine is called Nine Ten, not Nine O Ten.” Sydney: “So how long do I leave the ear drops in?”  Me: “Five or ten minutes.” Sydney: “So until Nine O Ten!” My thought bubble: Where are those eardrops? I think the directions said something about leaving them in ‘til Nine O Ten. Wait….

Sydney: “When you are gone to camp I will miss you.” Me: “I will miss you too. Regan and Dad will take good care of you.” Sydney: “Why does Regan have a headache today? What is a mind-grain anyway? I have too many mosquito bites. Oh Mom! There is a wasp nest out in the chicken house. I forgot to tell you yesterday. I don’t know if it is a wasp nest or a mud dauber’s nest. Dad needs to bring that spray out there. What color are wasp nests and mud dauber nests?” Me: “I’ll show you a picture later.” Sydney: “How about now?..... Hey! What are you typing? Is that about me?” Me: “It’s time to go to school.” My thought bubble: Heaven help her teachers today.  

Want to read about other mornings we've had? Here's one: Saturday Morning With Sydney