Rain patters on the roof on a Saturday morning. The comforting, homey sounds of pouring cereal and my seven-year-old’s chatter lull me.
My nine-year-old daughter cruises around the room, poking at objects, shifting things around randomly, dropping things, babbling in the toddler syllables that take over at home from her fairly normal speech in public.
After a few minutes, she disappears outside. I will need to corral her soon and ensure that she takes her supplements, brushes her hair and eats something, preferably something with protein, but I put it off for a few more minutes. We almost never have a relaxed weekend morning at home.
The seven-year-old starts his piano practice and homework. The nine-year-old has been in and out several times. I manage to get her to swallow the supplements and she only screams a little when she has to sit and brush her hair. They have been really good this morning and I remember that there is the last of a cobbler in the oven.
I talk my daughter into an egg for breakfast, as brain ballast, and then tell them we’ll have a morning treat—cobbler with some spray whipped cream from the can that Papa got yesterday.
I know this is one of my daughter’s favorites. With its contents of sugar and preservatives, canned whipped cream isn’t great for her and it could cause a bit of chaos and mental fragility today, but she’ll be able to blow off steam outside.
The kids both cheer, united for once, and I go to the fridge to get the coveted can.
A quick glance doesn’t reveal it so I start shifting containers. Then I start a systematic search, top to bottom. No whipped cream. I
know it was there last night and I know my husband doesn’t like it. I ask my daughter, who is most invested in it to come and look. She scours the fridge and sounds completely baffled by the missing whipped cream, though not upset.
“I’m going outside,” she says with a resigned shrug. “I give up.” No baby talk in that at least.
I notice when she’s at the door. She’s headed out the door away from the trampoline and the swing. “Where are you going? “ I ask absently, my head still in the fridge.
“To see the chickens,” she says and slams the door.
A few minutes later she is back, buzzing around, her vibe becoming more frantic as the morning progresses. She knocks books off the table and scatters bits of broken plastic from a toy across the floor. She puts muddy hands on the food I’m making for lunch. She won’t either do her homework or play. She refuses cobbler with no whipped cream. Too much fruit. “Yucky.”
Then she says she’s going to visit the chickens again.
“What are you doing with the chickens? “ A jolt of alarm goes into me. Our chickens are large, tough and utilitarian. I am only a little concerned for their safety, but she has never shown any interest in the chickens before, except for the one day when we brought home somewhat cute, half-grown chicks.
“I just really like the chickens. I really really like them,” she calls back as she slams the door again.
Suspicion blooms inside me. I meet my seven-year-old’s gaze. He doesn’t say a word but slides off his chair and dashes to the door. Not a word has passed between us on the subject but I know he is going to spy out what she is doing at the chicken coop. It will no doubt result in conflict and very possibly a fist fight.
I’m too exhausted to stop him though. The past few days have been a whirlwind—an endless string of work, her meltdowns, doctor’s appointments and school problems. The relative calm of cooking while dealing with kids has me groggy. And anyway it’s seventy yards up a steep hill to the chicken coop and I have onions frying in a pan for soup and a dishpan full of soapy dishes.
Someone needs to check on what is going on at the chicken coop, so I let the seven-year-old do it.
In two minutes, he’s back, the empty whipped cream can held up demonstratively. “Yup, she was squirting it into her mouth,” he says, confirming both of our unspoken suspicions.
I am grateful that he doesn’t care that much about canned whipped cream. One less bickering fight between siblings. I’m also impressed to see that he managed to get custody of the canister without physical injury… hopefully to either of them. The can is entirely empty, so she probably abandoned it to the chickens.
I’m going to write about life and parenting with a neuro-diverse child. There will be people who judge me for even mentioning children in my writing. The new thinking is that one should wait until they are adults and then ask for their consent before writing about them.
There will also be those who curse me for telling the harder side of living with a neuro-diverse person. There is a heavy push for parents to gush about how privileged and honored we are to parent this specific child. It comes after several decades in which parents of neuro-diverse kids were sainted and considered to be charitable saviors of mental invalids. Now the pendulum has swung the other direction, and we are required to abase ourselves in gratitude for a life that is in most cases still both physically and psychologically exhausting but also just part of life.
As usual, I am not much influenced by the trends. I am writing about this because there is a crisis in judgment of and pressure on families with neuro-diverse members. Services and educational adaptation are minimal and the vast majority of the blame for any difficulties is shunted onto families, who are almost always struggling as hard as they can to help those with neuro-diverse conditions survive and thrive in a brutally neuro-typical world.
Another reason is that once the years have passed, it is unlikely that I or anyone else will remember what these years were like. Middle childhood can be a very difficult period for many neuro-diverse children and their families. Most outsiders have no clue and are quick to jump to judgment when they see the outward manifestations. Even neuro-diverse adults often forget what the day-to-day reality was like. This is a world that rarely gets a detailed accounting.
For that reason as well, I will write.
“I want it! Now! Now! Now! I hate you! You’re the worst parents! I hate you! I want it! Please! Please! I’ll be good! I’ll be sooo good! I hate you! No! No! I want it!”
My nine-year-old daughter shrieks as my husband and I pull her out of the mall by gripping her upper arms on either side, careful not to injure her but firm in our refusal to let her topple displays or persist in a demand-based tantrum.
This was meant to be a quick stop for groceries but things have derailed. She is twisting between us, kicking at our legs with her sharp little princess heels, interspersed with frantic promises to be perfect and manic screeches of hatred. She turns to sink her teeth into my hands, but I am still stronger and quicker than her. I shift my grip and deftly avoid the bite.
The meltdown was most directly sparked because she saw the round pink globes of LOL dolls in a toy store window and insisted that she must have one. These collector’s dolls come in opaque round packages. You cannot tell which one you’re getting. That apparently is the fun in it or maybe just the profit in it for the manufacturer. They are only a tad more complex than the toys in a Happy Meal but they cost a solid $25 per secret package where we live.
My husband and I aren’t impressed by the dolls in the first place and we generally don’t buy toys for the kids during random shopping trips, let alone anything that expensive. Her name day is coming up in a few weeks and I suggested that she could ask for one of these dolls for her name-day gift. That started the whining, yelling and kicking, though it was still at a somewhat subdued wheedling level and was mostly directed at Papa, who is more amenable to impulsive purchases than I am.
But he has been practicing sticking to his statements with her and he had already said no. He repeated himself more firmly and that sparked the all-out revolt.
We finally pass through the automatic doors of the mall and my husband releases her arm, apparently assuming that she’ll stamp her feet, sulk and eventually recover. But instead she wrenches her other arm out of my grip and spins toward the doors with lightning speed. I catch her round the middle, glad that I’m still relatively agile. My husband turns, slower to react and stares. Then she tears herself away from me and sprints into the parking lot, across lanes of traffic, heading in a straight line away from us.
“Get the car!” I yell over my shoulder and dash after her.
I’m very nearsighted and I dare not let her get too far away, but I know that the only way we’ll contain this situation is if we can get her in the car. She reaches the end of the parking lot without slowing down and disappears through a line of shrubs still a hundred feet in front of me. I break through the shrubbery and find myself on the exit ramp of a gas station.
I don’t see my nine-year-old as I dash across it and come around the pillars of a giant gas station sign. There is another line of denser shrubbery behind it. I run past it but then turn, real fear hitting my breathless body as I survey the gas pumps and cars. There are now many directions she could have gone and I can’t see any sign of her purple shirt and turquoise mini-skirt.
Fortunately, I’m seriously winded by this time though and my feet don’t carry me far beyond the shrubs. I hear a tiny noise and spin to see her crouching low under the branches. She stares for a split second before she leaps away and that’s all it takes. I grab and latch onto her arm with an iron grip. I pull her back around to the exit ramp and my husband drives up in our car, which is something between a hatch back and a mini-van with sliding doors in the back. He opens a door from the inside and I wrestle our struggling, screaming daughter inside.
No one appears to have noticed and I’m momentarily torn between relief and cynicism, considering that to any bystander the scene just played out looked exactly like the classic Hollywood portrayal of a child kidnapping.
She is still screaming and kicking in the back seat. We can’t stay on the exit ramp with cars behind us, so my husband drives two blocks to find a place to pull over, so that we can wrestle her into her seat belt. She seems moderately calmer and we reiterate that she can ask for a toy for her name day but she will not get this toy today or anytime soon, due to her current behavior.
We have to keep going. We’ve had dinner and it’s nearly bedtime. If she doesn’t get into bed at the right time, she will meltdown in the morning and not get to school and then someone won’t get to work. “Just wait them out” is almost universal parenting advice. It’s meant well but it often doesn’t work in the real world.
We get back into the front and my husband pulls the car onto the freeway. It seems unlikely that she could actually plan this, but as soon as we’re in heavy traffic she starts up again, kicking my seat and hitting her brother, yelling insults at him. I reach back and seize her hands, keeping her from physically tormenting the seven-year-old.
By this time we’re on a freeway bridge and there is nothing more to do. I meet his eyes and talk in a low, calm voice under the screeching.
“I know this isn’t fair. I’m sorry. I need you to be a big kid and be calm,” I tell him. I explain that the nine-year-old is having a really hard time and has a problem in her brain that makes it very hard for her to regain control. She screams insults and bullying names at him and starts to cry a bit. I hold him with my gaze and he keeps his hands away from her.
By the time we reach the next exit, she is a bit calmer. We discuss stopping in low tones but it won’t help. She will see it as power if the whole family has to stop and wait. Both my husband and I are still relatively calm and this alone is a major victory. We have managed to keep our cool despite a pretty extreme scene.
I lay out the consequences of further physical attacks to the nine-year-old, while still containing her hands. I don’t kid myself that this will have much effect. When she’s in this kind of state, her ability to process cause and effect is nearly nonexistent.
Even so, she is quiet enough that I release her hands, which turns out to be a mistake. She seizes the nearest hard object, her large plastic doll and throws it at my husband’s head. Since he didn’t take that exit, he’s wrestling with a snarl of fast, big-city traffic. I mange to knock the doll aside so that it hits the headrest instead of his head and falls onto the seven-year-old.
I give him a quick apology and make a left-handed sweep of the back seat, removing every hard object I can reach that she could throw and piling them at my feet in the front. She’s screeching at top volume again, hurling most of her insults at me and Papa. The seven-year-old has flattened himself against the door on his side.
I turn back to the front and check to make sure that my husband is undisturbed while driving. The small shocks of her feet slamming into the back of my seat irritate me, but it is mostly the greediness of her demand for immediate toys that makes me seethe with anger inside. I am hanging onto my calm by a ragged thread.
I spare a moment to think about parents with other types of disabilities and single parents. What if my husband was driving alone with them when this happened? What if I didn’t have above-average physical strength and speed for a woman or what if my eyes were just a bit worse? The thought of the judgement of people who would see us and think we were being overly harsh and that we should somehow magically find a way to handle the situation with grace and sweetness fill me with disgust.
Then the seven-year-old cries out a warning and I turn just in time to fling up a hand as the nine-year-old launches her booster seat, which she has managed to get out from under her, at my husband’s head.
I don’t catch it and she seizes it again when it falls. She draws back for another throw.
“Don’t!” My husband’s strangled voice indicates that he’s struggling with a major freeway interpass and he can’t even have me twisting in my seat and waving my arms around. I hold my hand up grimly, ready to take whatever she has got to keep it from hitting the driver in the head.
Every day is exhausting and hard. Some days I feel like I'm in a war zone.
I don't say that lightly because I worked in war zones years ago. At the end of the day my ears are ringing, my vision is fading in and out and I am staggering on my feet. Every inch of my body aches and my shoulders and cheeks are bruised from blows. My husband's face is blank and his eyes are glazed after only being in it for a few hours after work. My son lies in bed in a fetal position.
The screaming hurricane is finally down at nine in the evening but we don't have a glass of wine and watch TV. I don't write on evenings like this. We just totter off to bed, separately, sometimes without even a word or a touch.
It isn't every day but it is like this most days.
I recently read The Little Monster: Growing up with ADHD by Robert Jergen. The author, a man with severe ADHD and auditory processing disorder (the same categories of disability as our daughter), describes growing up in a fog, unaware of many of his actions, unable to remember what happened, what he said, what others said, moment to moment. He wasn't just in trouble. His parents, even used to four rambunctious boys before him, were desperate.
I listened to it as an audio book on a rare day at home alone while my husband was out with the kids. During the portion of the book focused on Jergen's childhood, I gritted my teeth and muttered angry words at him and sympathy for his parents. The book does a good job of helping the reader understand his experience and he didn't describe his parents nicely, but I knew what it was like for them.
He did accurately describe the endless hurricane of chaos, destruction, obliviousness and carelessness with which he filled their home. He was the youngest of five boys, so it is possible that his presence wasn’t as all consuming as this hurricane is in our home.
Here there is often only one person who is allowed to be human on many days, only one person who is allowed to have needs. Nothing and no one can exist beyond her when she's in meltdown. And yet it isn’t her fault any more than my bad eyesight is my fault. And in rare quiet times, she promises to try not to be a hurricane.
Jergen writes that he believes everyone in the future will hope their children have ADHD. That is the only thing in the book that is truly wrong and infuriating. I have great sympathy for him and honor his experience and his admirable truth telling about having these disabilities, but the truth is also that he has never parented a child, let alone a child with his type of disabilities.
I am glad for the hope that at least someone with these types of disabilities has found a measure of happiness and independence as an adult, though it is clearly noted that Jergen tested as highly intelligent on standardized tests even as a child and many children with these disabilities do not.
As a person with a significant visual disability, I know all too well that adaptation can be done and yet that it takes a great deal of mental resources. I have watched the vast majority of blind and visually impaired adults sink in to poverty and isolation, while I battled my way to a life with a family and a middle class lifestyle.
Some kids with ADHD are also very intelligent, just as there are people with autism who are high functioning with genius-level intelligence. That has, in fact, become a kind of stereotype for ADHD, but it isn’t actually the norm.
Those people with disabilities who get a voice to speak about their experiences are those with abnormally high intelligence who manage to find coping mechanisms. They are not the ones who are destroyed and sentenced to failure. poverty and the astronomical ADHD-in-prison statistics. Coping mechanisms may be beyond the reach of many.
The house is a disaster. There are toys and clothes scattered all over the kitchen and hall floors. The kitchen is piled high with dishes. I’m cooking two major meals at once because the next day is jammed with doctor’s appointments and school events for kids.
My seven-year-old gets up from the early lunch I heated for him and goes to get his own backpack ready for a soccer tournament. I call out items he shouldn’t forget and I manage to fill his water bottle in between stirring veggies on the stove and putting breakfast things back in the fridge.
I put a kiss on the top of his head. I know there are benefits to hardship and having to be moderately capable at almost eight will put him ahead of his peers in many ways. But it still makes me sad that he gets no more than this hurried send off for the first soccer tournament of the season. All the other kids have devoted parents cheering from the sidelines at every game.
But it isn’t going to happen for us. For now I’m just grateful that the nine-year-old is letting me cook very briefly. She is actually doing something nice for once. I put the box of washable kid-safe paints where she can access it near the drawing supplies, and she has the contents spread out by the fireplace. Hopefully she’ll paint and I’ll get thirty minutes of cooking done.
On my way to the freezer I walk by and notice that she has opened every single color of the washable paints, which are used not just by her and her brother but also by my ESL students. I stop to make a quick check and find to my dismay that the damage has already been done.
Every single color has been squeezed out of the bottles into a plastic large container and she now has a half gallon of dark gray paint. There are dregs in the bottoms of a few bottles, which she didn’t squeeze hard enough but mostly the paint supply—at least $50 worth—is gone. That is the price paid for the last twenty minutes of uninterrupted cooking.
“I don’t know that letter! I don’t know it! Let me go! No! No1 No! I won’t do it! I don’t know how to read!”
The nine-year-old is throwing a tantrum because she momentarily cannot remember the sound made by the letter A. She can actually read, though dyslexia makes it a struggle. But her short-term memory issues, a common part of ADHD, makes it so sometimes she truly cannot remember the sound of a letter.
The bigger problem is that she knows this happens and she is not above pretending to have such a memory attack in order to get out of homework. My husband is close to tears and this has only been going on for one hour.
The day is yet young at 5:00 pm.
By 6;00 pm they have switched to math, giving up on today’s reading assignment. Dinner is ready and I take over from my husband.
“How in the world am I supposed to explain algebra to her?” he fumes at the textbook. The problem reads 42 - ? = 14.
Our nine-year-old can—on a good day--just barely work out 42 - 14 = ? with help. But my husband never needed to work at math as a kid, so he doesn’t remember how you get from that to the real problem. I wasn’t as good in math and I still remember the agonizing steps.
I spend the next two hours trying to coax her into the basics needed to get to where her classmates are, while she screams and thrashes around on the floor.
I have to get to physical therapy as soon as I get the kids off to school in the morning. I prepared extra well the night before, so all I have to do is slip snacks and water bottles into their backpacks.
The nine-year-old insists on wearing leggings with half a dozen holes in them and a halter top even though it froze last night and the forecast is chilly. I know the judgement I’ll get and I force a long-sleeved shirt on over her halter top, even though I know she’ll just take it off. I can’t physically get the halter top off of her with out injury to one or both of us.
She starts screaming ten minutes before it is time to leave for school and she continues well past the time they usually leave. I let the seven-year-old go on his own. She seizes a log off of the woodpile and hurls it against the glass back door of the house. The glass doesn’t break but I doubt it can take much more.
I open the door a crack and tell her to stop hitting the glass and go to school. She grabs a longer piece and tries to strike me with it. I close the door and it lands against the door jamb. I open it a crack again and tell her that every time she hits the door she will lose a day of television privileges. We’ve been through this before.
I count fifteen strikes of logs against the glass before I leave by the other door, locking it behind me. She comes raging around the house, screaming at me.
She still has some nervousness about getting in trouble with her teacher. I tell her that she will be late for school at this point but if she goes right away she will not get in big trouble. It makes no difference. She continues to rage and scream, her face covered with snot and her hair stringy at the sides.
There is no waiting it out. I either have to leave or I will miss an appointment that took six months to get. The irritated doctor, who didn’t believe me the last time I postponed an appointment, might not even allow me to get another.
I whisper “Good morning” into the children’s ears as the first streaks of dawn make silver in the east. They need time to get up slowly. Given that they have to walk to school because I can’t drive, we rise pretty early here.
I turn on lights, scratch and rub backs, exchange a few words with the seven-year-old and smile noncommittally at the pretend baby talk of the nine-year-old while I give her a reassuring hug and kiss. Then I go down stairs to get snacks and vitamin supplements ready.
“She’s in Papa’s room messing with his office!” the seven-year-old calls down a few minutes later.
Yesterday, she climbed up on the stove to get candy out of the stash on the shelf just below the ceiling and then refused to eat any dinner because she already had her sugar fix. She took non-washable dye and hid it in her room when I did an art project with her and then lied when I was looking for it. She got into my room and made off with my phone and my scissors.
I have to go to physical therapy again this morning. In a flash, I am so angry I can’t think straight.
I run up the stairs and pull her away from my husband’s desk, where she is rummaging. I take her downstairs and my voice cracks with strain as I demand that she tell me what she was doing, what she had taken or what she was looking to take. I am pretty sure it is either sweets, money to buy sweets or something electronic she wants to distract with at school.
She refuses to say, as usual. She doesn’t tell the truth anymore the way she once did. It is hard to blame her, since she often gets in trouble and now is often accused of fibbing.
My voice cracks and I start yelling, shattering the peace of the pink-tinged morning. My voice is hoarse and scratchy for the rest of the day and I feel like a bad parent for ruining the morning for everyone.
I am too tired, too worn out. I am sick and tired of lies and commercial demands and unkindness.
“You just have to give her some positive reinforcement.”
“Well, you know ADHD doesn’t really exist. It’s just something they say to excuse lazy parenting.”
“I know what it’s like. My kids are all really active. They’re great in sports. You should get her playing sports.”
“It’s about diet. I’ll bet you always eat out at McDonald’s”
“I’m sure it isn’t really that bad. And she’ll probably be a genius in art or something.”
These are all real statements that people have said to me in just the past month. Neuro-diversity is terribly complex and you’ll never find another child exactly like mine. Some neuro-diverse children are exactly the opposite. There is no way that most people can truly understand people with hidden disabilities.
But there is one thing that everyone should know that would actually help neuro-diverse people and their families. That is that hidden disabilities are real and they are very difficult to deal with. Assume you don’t know.
And don’t judge.
My child and my whole family eats a more healthful and careful diet than 90 percent of the population today. My child gets lots of exercise, taking multiple aerobic dance classes, walking too and from school and bouncing a giant trampoline most afternoons. It isn’t “all in the diet” or “lack of exercise.”
It’s a disability. It exists and it appears from the outside like a very bad, very spoiled child. Our walls are covered with more reward charts than any household I’ve ever seen. I have studied and tried dozens of strategies and parenting styles.
Most work fine with my seven-year-old. He is known for being a very active and even a “wild” boy but he doesn’t have ADHD. None of the parenting techniques actually “work” with my nine-year-old. A few help a little.
i used to think I could tell if a child was being parented well by observation. I now know that I can’t. I wish I had been able to learn to be less judgmental in an easier fashion.