My baby Dylan turns 13 tomorrow. Yesterday, he hosted a party in which 5 friends (2 girls, 3 boys) came to his house, ate pizza and cake, hung out in the game room and played zombie tag outside in the mud.
In preparation, and in fear, I started reading a book called, It’s So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success. The premise is that kids with learning disabilities can misread social cues, and thereby end up having few – if any – friends.
It suprised me to discover that the person who most needs social help is Shane. The book is great, though and I’m looking forward to finishing it.
Meanwhile, Dylan’s party was a huge success.
Both Bill and I noticed that Dylan was particularly mature during his party. Screeching and Bouncing Dylan was replaced by Responsible and Content Dylan.
When all six kids wanted to do six different things, Dylan was the one who found compromises so that they could all be happy. His ideas were valid, his attitude serene. In some cultures, they say age 13 is when a boy becomes a man. For the first time, I can see why.
The conversation at the table – a group of very intelligent kids, most from the elementary GT program – consisted of debate over welfare and concern about racism. Dylan also took in donations for the local animal shelter in lieu of “human” birthday presents – and everyone contributed.
Later, Dylan stood up for Shane, who (at age 9) was in the room for a relatively tame version of Truth or Dare. He made sure the kids didn’t embarrass Shane or trick him in any way.
And shortly before the game of zombie tag, I heard Dylan upstairs with one friend who had, apparently, gotten upset and locked himself in a room. I never found out what happened, but I heard Dylan say, in a quiet voice and through the closed door, “Do you think I don’t know how you feel?”
My son has the kindness of a saint.
And I didn’t realize it until I heard him say those words.
In all the hoopla over medication, good grades, discipline, blah blah blah – I’d honestly forgotten that Dylan is so incredibly warm, kind and caring.
He is, in fact, the child who was, at age 3, walking up the stairs behind my mother when she accidentally kicked him in the face.
Dylan – a toddler – said, in a matter-of-fact tone, “Oh I’m sorry, Mimi, that my face got in the way of your foot.” He wasn’t hurt or stunned – just sorry that his face had gotten in the way of his grandmother’s foot.
And now his empathy has evolved into an ability to help his friends in a time of need. I’m astounded, overwhelmed and so, so happy. Nothing else in this world matters as much as human kindness.
And Dylan really has it.
About 10 minutes into Dylan’s IEP meeting today, Dylan came in. He sat at the head of the table, several chairs away from the adults at the long conference table: his parents, the 7th grade vice principal, his case manager, his guidance counselor and the special ed coordinator.
We spent more than an hour discussing Dylan’s issues. We had two teacher reports from opposite ends of the spectrum: engineering (A+) and algebra (F).
Dylan sat politely through the entire meeting, making appropriate comments and answering direct questions. The case manager and special ed coordinator outlined Dylan’s four main objectives – which, after 20 minutes of discussion, he could not repeat. Come to think of it, after all that lecturing, I can’t repeat his four objectives, either.
But one of the objectives had something to do with self-advocacy. Dylan has had a great deal of trouble asking for help. He thinks he knows everything already. He thinks that, if he doesn’t know something, he should know it, so he flails along aimlessly, hoping he’ll figure it out in time for the test.
Sometimes I see Dylan as a Japanese beetle that’s landed upside down, waving his legs wildly and wondering why he’s not upright.
Dylan has hit a wall which, for him, means he needs to do some actual work to get good grades. But since he doesn’t know what extra work he should do, what’s most important is that he ask for help.
“What does ‘advocate’ mean?” his case manager asked him.
“Getting what you need basically,” Dylan said.
YES! He knows what it means! We’ve only been discussing it since fourth grade – so now we know he really understands advocacy.
And yet, he doesn’t know what homework he should do.
“So you could ask a teacher to tell you what the homework is,” someone suggested.
It was around that point in the meeting that I noticed Dylan gazing off at a poster of snow-capped mountains. He didn’t seem the least bit interested. Apparently, an hour of discussing his needs is WAY too much time on one topic.
I think everyone agreed on that point.
So we sent him back to class, to self-advocate at will. Hopefully, he’ll follow some logical progression toward order and organization. Perhaps he’ll find out what the homework is and when to turn it in. Perhaps he’ll even turn in some homework on time! Miracles have been known to happen.
But I got the distinct impression that knowing the meaning of “advocacy” and actually acquiring what he needs are two different things.
I wanted to yell at him as he walked out of the meeting room, “Okay, Son, now is the time! Advocate! Advocate!” I considered leaping from my chair and doing a little cheer, “ADVOCATE! ADVOCATE! YAAAAAAAAAY!”
I always have such high hopes on the day of an IEP meeting. I expect wonderful things to happen at the meeting, and spectacular things to follow.
But Dylan just wandered out the door, and his dad and I followed shortly thereafter.
When Dylan was 3 years old, he would occasionally lament: “I wish I was a girl.” At first, I wrote it off. Then I thought, Gee, maybe he really wants to be a girl. Finally, after several months, I asked him directly.
“Why do you want to be a girl, Dylan?”
“I want my hair to be like that,” he said.
“You want to have long hair?” I asked, both relieved and incredulous.
“I would like that,” he said. At 3, he thought only girls had long hair.
“Okay then,” I said, “you can grow your hair long.” And so he did.
His hair grew very long. He was mistaken for a girl nearly everywhere we went – and the mistakes went on for years. He would laugh it off, his long, wavy, reddish-blonde hair falling into his face as he laughed, “I’m a boy!”
About six years later, when we walked into the middle school GT/LD classroom, it was full of boys – all but one with long hair. Long hair wasn’t in or out, really – but in that classroom full of 6th graders who all had issues similar to my son’s, it was an anomaly. One boy had a crew cut. All the rest had long, flowing hair.
A few more years have passed since then. Dylan’s proven himself to be somewhat of a rock star at his school – although singing Italian opera is a bit classier than being a rock star. His hair always stood out in a crowd, and he was easy to find. The color helped – but the length really stood out.
But something happened in the past week – and Dylan decided to cut his hair.
It happened on International Night, he told me, the night he sang O Mio Babbino Caro in front of a couple hundred people, including many of his peers.
“I was just standing in front of the mirror and I thought, I really need a haircut.”
And a few days later, when we got to the stylist, he chose short hair. It’s long in the front, but a good inch or two is showing on his neck – a neck I haven’t seen on a dry day in many years.
He looks awesome. I’ve always loved long hair, but his new, short haircut is great.
For the past year, Dylan was forced to pull back his hair for every concert with the Children’s Chorus of Washington – a prestigious, uniformed choir that accosted Dylan with bobby pins in spite of his protests.
“Here’s the real test,” Dylan said to me today. “Would I have to pull back my hair for CCW?”
I studied him thoughtfully. His hair is a longish style, but there is nothing to pull back.
“Nope,” I said.
“Then I really do look like a boy,” he said. He smiled triumphantly and walked away – my son, the boy.
Our first snow of the year hit today – big, gorgeous flakes that fell lazily to the ground, followed by a blizzard of said flakes that bombarded the ground, followed by hard, freezing rain that turned the white blanket to squishy mush.
The kids were elated. They spent all day working hard – pulling out Christmas things and decorating around the house, practicing puppeteering for the church performance, even doing the graphic art work on my holiday letter.
Then, just before the sun went down, they asked to go outside. Stores were closing early, the roads were so slick as to be terrifying, and stepping into the snow sounded like stepping into mud. But they said they’d get their own snowsuits (not an easy task) and boots – which they did. With only minimal help (Dylan yelling from outside because he forgot his gloves and locked himself out of the house) – they went outside to play.
I watched them from inside. They never just play. First, they had an elaborate game requiring old tennis balls. Then they got out the sleds and – in one inch of mush – created something like an obstacle course which somehow involved sledding across our perfectly flat yard and skidding down into the woods (ouch). Then they proceeded to the backyard where they designed and developed roads – or rides, I’m not sure which – so that our yard now looks like we just finished hosting a monster truck rally.
Nearly two hours later, I called them in for a warm bath before dinner. They were dripping and pink, but when I said, “How was it?” they both responded simultaneously – “IT WAS AWESOME!”
Good, clean, wholesome fun. An education beyond school. A life well-lived.
As long as I can remember that their success will stem from more than school – and it really will – we can all be happy.
Today was a beautiful day.
My son can’t remember where he put his shoes. He doesn’t finish or turn in his homework. He spins and leaps everywhere he goes. He often forgets to brush his teeth. Without a doubt, he has ADHD.
But God gave him the voice of an angel. And for a change, I just want to concentrate on that today.
Click below to decide for yourself:
Dylan sings O Mio Babbino Caro.
Our incredibly inefficient 7th grade special education “facilitator” – who has not facilitated anything, and in fact has made many things more difficult – emailed me. She asked me to please fill out the attached Parent Report form for our upcoming meeting.
“When is the meeting?” I emailed back. No one had informed me of an upcoming meeting – and parents are, by law, supposed to be notified so that the meeting can be rescheduled if necessary.
But instead, we find out that the meeting is next week. I’m certainly glad they require a Parent Report, or we may never have known.
The form asks several questions: What are your child’s learning strengths? and What have you noticed about your child’s behavior? etc. I always do fine answering them – until I get to the last question.
How do you think the school can help your child?
I am always stumped by this one. At first, I walk away from the form because it is too troubling. I come back and stare at the question a bit longer.
How do you think the school can help your child?
I want to say: I honestly don’t believe the school, as it is, can help my child. My child needs a completely different school system. Montessori would be good, I think. Dylan learns best in a hands-on environment with plenty of interaction and stimulation. He needs very little from his teachers. He excels when given a huge project, plenty of time, and gentle guidance.
Please, could you just change the public school system to one in which kids can learn by doing, instead of by sitting in a mind-numbingly boring classroom listening to someone drone on at the front of the room? Could you eliminate worksheets and homework, just for my son?
Or at the very least, could you give him teachers who don’t care if he stands on his head while he works? And could you be sure he’s not penalized for curiously studying – by touching – every single thing in the classroom?
Also, it would be good if he could sit on an exercise ball, or hang from a set of gymnastics rings while the teacher talks. Again, this is only necessary if he has to listen to lectures. If you can arrange the Montessori method for the school system, he won’t need to bounce because he’ll be too busy learning.
Instead, I stare at the page. Dylan is struggling so badly now, I doubt there’s anything we can do – except putting him back on stimulants – that will help him succeed. I know I won’t get what I ask for, because of some dated school policy that I won’t learn about until next week. But I make my requests anyway, instead of voicing my true feelings.
How do you think the school can help your child?
“Perhaps there could be a way for Dylan to re-hear classroom lectures – audio-recording them? – so that he can go back over them and gather more of the information. We also need to be sure he’s getting – and going over – notes from the lectures. Recently (and finally), we’ve also learned that his best success in math – and possibly his only success in math – is when he works one-on-one with someone else.”
How do I think the school can help? Really? By changing absolutely everything.
The boys are too smart.
If my kids were not smart, it would be so easy to get help for them. They could go to special classes or special schools and even ride a special bus maybe. Labels like “mentally challenged” mean that people expect nothing from them.
Kids who are mentally challenged don’t have to go to college. No one expects them to do that.
I spent much of this holiday weekend with my sister-in-law, Barbara, a 57-year-old woman with the mentality of an 8-year-old. She spends most of her time mimicking what she hears, often very well, but she doesn’t have the capacity to think.
Barbara and I were driving in my car recently and she said she was hot. She asked me to put down her window.
I thought about my toddlers opening their own windows.
“You can open your own window,” I said. “There’s a button right on your door.” Our car has two buttons on the door – one for the window and one to lock/unlock the door.
She looked at her door. Then she locked it. She unlocked it. She locked the door again. She unlocked it again.
“Huh,” she said, completely befuddled.
“Try the other button,” I said.
She pushed the other button. It has to be kind of pulled back, rather than pushed down, to get the window to go down. She pushed it hard. Then she picked at the button. She pushed it harder.
“Try to move it a different way,” I said, which is what I said to Shane when he was two. But she couldn’t figure out a different way. She tried to take the button off the door. She pushed it gently. She pushed it hard again. She simply couldn’t navigate a way to open that window.
“Huh,” she said again.
I opened the window for her.
Barbara took the special bus to a special school and went to special classes.
To be fair, I do not wish my kids could take a special bus to a special school. I am glad that, so far, they don’t even need special classes.
But Dylan gets up from the table to put away his glass and instead ends up dancing a jig in the other room. When reminded about what he’s supposed to do, he picks up his glass and spins around with it, all the way to the sink. Sometimes it still ends up by the coffee maker instead of its intended destination.
Dylan can’t find, finish or turn in homework without incredible amounts of struggling. And now that he’s on the second new medication, which supposedly takes another month to test, his grades are reflecting someone who can’t open his own window.
Yet Dylan can, actually, do anything. This weekend, he started playing the piano, on key, along with the radio. This morning at breakfast, he conceptualized an underwater village – with air supply – so that time could move slower (which it does in low-lying places) and people would live longer.
He’s so bright, most of the time I can’t keep up with him – and I certainly could never come up with, or do, most of the things he does. I simply can’t. He’s too smart.
So I expect that he can also find his homework. He can’t. I expect him to find his shoes. He can’t. I expect him to know when something is missing or incomplete. He doesn’t.
Dylan can think. He thinks very well. He figures out some incredibly complex problems. But he can’t get his glass to the sink, his paper to the teacher, or – often – his ideas onto paper.
He can think very, very well – but he can’t make his thoughts come to life without a ton of help. This is the crux of the problem.
If I were on a quiz show, and someone asked, What bothers you the most about your son’s ADHD?… I would think about the disorganization, the forgetting, the failing of classes, and the need to constantly repeat myself.
But what bothers me the most is Dylan’s use of other humans as a brain stimulation tool – particularly when he uses his brother.
The way Dylan’s brain works, information doesn’t flow readily from one section of his brain to the other. It goes so slowly, sometimes it doesn’t get there at all. It’s like a broken electrical circuit. And one thing that speeds up the process – just a tad – is doing something physical. That’s why he’s so incredibly bouncy. Stress balls are a great tool, except that he does tend to throw them. He jumps up and down, spins around, dances and throws things all so he can assist his brain in functioning.
But sometimes, there are no stress balls to be had. He picks up whatever is close by – and quite often, what he finds is his little brother. He uses Shane to stimulate his brain.
He grabs Shane and hugs him. He tosses him around like they’re doing the tango. He pushes him, pats him, squeezes him, pulls him, drags him and rolls on him. They wrestle like animals and Dylan is twice Shane’s size.
Surprisingy Shane, who doesn’t even like me to put my arm around him, takes all of this in good humor. He giggles and laughs and acts as though it is all in good fun. When Shane gets hurt – and he often gets scraped or scratched – he is always the first one to defend his brother, claiming that it was really just an accident.
So I suppose I shouldn’t be so bothered by the dragging and pushing and tossing. But Shane is my baby, too. I want him to be safe and unharmed.
Before Shane was even born, I read a book in preparation called Siblings Without Rivalry: How to Help Your Children Live So You Can Live Too.
I wanted to be prepared. I didn’t realize, at the time, that I was going to have two drastically different personality types, or that Dylan wasn’t a typical three-year-old child. I just didn’t want them to hate each other.
The thing I remember most from the book is that, as long as the kids aren’t in serious physical danger, I should back off and let them do their own thing. And I have done this, to the best of my ability, since the day Shane was born. Partially as a result of that, the two of them are now very close.
Dylan isn’t really dangerous. He can be rough, but not the kind of rough that breaks limbs or causes hospital visits. His shoves are tiny, his gallumphing more of a dance than a wrestle. He’s very bouncy and ridiculously hyper on occasion, but he cares more about other people than he does himself. (He can work on this aspect of his personality in therapy when he reaches adulthood, if he’d like.) Meanwhile, he really does not intend to harm Shane.
But Dylan does intend to use Shane as a brain stimulant, whether or not Dylan is warned, threatened and even physically removed from the situation. He is constantly hanging on Shane – unless he has some other mental form of stimulation.
The only thing I can do to keep Dylan off of Shane is to keep his brain otherwise occupied. When Dylan is building, inventing, creating, designing, or researching something that really interests him, he is absolutely mellow. Playing a mental game that he loves, for example, particularly if it’s a game he invented, takes away all that physical angst. He becomes almost adult in his behavior, and his brain is firing on all cylinders. It’s amazing.
Of course, that’s when Shane ends up entertaining himself by writing or making a movie – which is also awesome, and a story for another day.
Our month of testing the new medication is finally almost over, so I called the doctor to make our appointment to get OFF the medication and try something new.
“You haven’t made the appointment?!” the receiptionist squealed. “The doctor is booked completely and she’s leaving the country until January!”
“But I called LAST WEEK and she said we had to wait a month!” I squealed back. My voice got very high. “The medication isn’t doing ANYthing to help him and he’s FAILING all his classes and we can’t WAIT until January!”
“Wait,” she said, pausing. “He isn’t with you right now, is he?”
“No,” I said, “but I can have him there in half an hour.”
“Right,” she said, “we’ll see him then.”
So I pulled him right out of Algebra class – which, along with three other classes, he is now failing – and took him to the doctor.
Hearing our woes about the new drug, our neurologist didn’t sound hopeful.
“If the Intuniv didn’t work, we can put him on Strattera,” she said. “Frankly, we have no other option. It was originally an anti-depressant but they found that people who take it can pay attention better.”
So basically, this is our last chance. And after absolutely no success with the other medication, and my poor son now failing everything, I’m not holding out any hope that this will do any good at all.
Of course, he isn’t suicidal anymore, so that’s a plus.
But he will be at the end of the year when he realizes that his dreams of going to college are lost because he’s flunked out of the seventh grade. I guess he doesn’t need to be an engineer and design cars, which is his dream. Perhaps he can be an auto mechanic instead. Same thing, right?
We start the new medication over a holiday weekend. We have to wait another month to see what happens. By then, it will be Christmas – and I’m betting he ends up back on stimulants in January.
This is not a happy cycle. Happy Thanksgiving, ho ho ho.
While Dylan is excelling at ADHD behavior without the benefit of medication that works, Shane is blossoming into someone who is completely incapable of recognizing the fact that he has put something down.
Shane has always been easy because he rarely forgot where he put things. He followed the letter of the law, so he always knew what he was doing, where he was doing it, how he was going to finish it, when (especially WHEN) he was going to do it, and what he was going to do after that – and how, etc.
Lately, though, he is losing, destroying and forgetting everything. More than once in the past week, I’ve honestly wondered if ADHD is contagious, or if maybe Shane just wants some attention for the same attention-grabbing things Dylan does.
Shane has a folder that he brings home from school every day. He’s been bringing home this folder since he was in kindergarten, forgetting it maybe three times in four years. In the past few weeks, though, he’s forgotten the folder three times – each time, completely befuddled as to how that could have happened.
His glasses went missing one day last week. He took them off while on the trampoline – which, coincidentally, was completely covered in leaves. He went out into the cold with a flashlight, praying earnestly the entire time, and actually located his $400 glasses IN THE LEAF PILE.
Things seem to just fall out of his hand, as if he were never actually holding them. I’ve watched him pick up a toy, play with it, then plop it down in the middle of the room and scurry off to get another toy. Mere minutes later, there are 600 toys on the floor, and he’s not playing with any of them – but he’s used them all. He never, ever puts anything away.
This weekend, we went through his stuff, so as to rearrange some furniture in his bedroom. He was stunned to find that he had as many recyclable papers (TRASH) as he did treasures, which he wants to keep forever and ever. These treasures were in a crumpled heap in his “treasures” area, and he was also stunned to find four full books that he wrote and hadn’t been able to find anywhere.
I have no idea what to do about this problem. When I put something down, I pay attention to what it is, and where I’m putting it. Shane doesn’t even know he has it in his hands, and then it’s gone. There’s no organization at all.
I remember reading once, long ago, that organization is a skill that needs to be taught. I also remember buying a book about organization for my beloved husband, who has the same amount of organizational ability as a baboon. He never found time to read it. And I never found time to teach him what needs to be taught – not that it should be my job, of course.
Shane, however, is still – possibly – trainable. If only I had a clue how to go about training him. Perhaps I need to read a book on the subject – quickly, before he loses everything he owns.
