I make it there eventually

I’m on the subway and in spite of being a seasoned New Yorker, I make a rookie mistake. I get on the train at the wrong platform and now I’m going downtown instead of uptown. Furthermore, I’m in such a daydreamy, contemplative fantasy land that I don’t realize the error until I’m good and far from where I wanted to be. Instead of progress I’ve gone backwards. Negative progress.

I correct things and get on the right train. I spend a minute or two berating myself for possible undiagnosed and under-treated ADD, then catch myself and get negative about that.

I spot a friend who I haven’t seen in a long time. People who don’t live in NYC think that we never run into people here. What are the chances? But the truth is we do. All the time.

The friend has to get off in three stops so we have a micro interaction. A lot gets exchanged though.

He doesn’t recognize me initially. I’ve been worried about this very scenario lately. I’m wearing some newish clothes that flatter me, makeup that fits with a makeup-no makeup trend I’ve been following and in spite of needing a trim, I’m having a good hair day.

You look so good! He says. This is an entirely new look for you. Maybe he was being polite but I take him at face value. I liked what I saw in the mirror this morning.

I think about saying something to him. I’m eating now. I’m eating enough and that accounts for how I look. I decide not to. It’s enough that I connected it and said it to myself.

We catch up a little about him.

He gets off. If I hadn’t gotten on the wrong train I wouldn’t be on this one, running into a friend and talking with him about this and that. He leads an interesting life and is a wonderful person.

It’s stunning how slowly the train is moving. Now with nobody to talk to, I notice it.

As impatience starts forming around the edges, I negotiate with myself. You’re looking for time to write poetry and prose. You love to make art. So now you have some time. Make art.

So I get out my phone and I make art.


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A Phone Call Like This

It could be the landline. It could be your iPhone. Sometimes it's an email, either through whatever grading portal the school uses, or directly from the teacher. It's never been a text.

It might be the guidance counselor, the school social worker, hell, even the gym teacher has had communication with you.

You are deft. You are a team player. You're there to work with them and that is what you do.

You share strategies. You follow up. You validate them. You call in outside supports. You keep yourself available because there is nothing more important than your kid.

You're good at this now. You keep your sense of humor. Soon, after the situation is under control, you laugh about it with whoever it is you're working with.

Ocassionally, there's a tiny bit of barely perceptible impatience lapping around the edges of things. You hide it from people. It's an irritant.

You have a rhetorical question. You wonder why it is that nobody else can simply manage your child. You have no problems at all handling  this kid. It's not always easy being the most competent person in his world.

But mostly you're all equanimity and confidence. You got this. It's how you roll.

But there's this one time. The situation goes on longer than it should have. By the time you know  about it, it is entrenched.

It has some new features. The first email has you off kilter. You ask for more details. They flood in. By the second email you're alarmed. You're out of your element.

Without pity or anger you make an observation. It is free of investment. Now you are a social scientist.

No one in your extended family has ever received an email like this. Not your niece's parent, your nephew's parent, or your own mother. You have  family members who are too young for school but you can already tell their parents will never receive a communication like this one. Same with the majority of your friends.

You wonder what it is like to never receive the phone call. It's hard to imagine such an uneventful trajectory through school.

You go overboard with your child out of fear, and then apologize a couple of hours later  when you've gained better perspective. You and your kid weather this.  He doesn't need a perfect parent every moment of every day. You are impressed with his resilience and your own.

But you're not fooling around. The next day you show up at school with your binder of materials and soon you are sitting with the guidance counselor, who at that very moment is the wisest person you have ever met and the kindest.

He's already done all of the things you were going to ask him to do. He tosses off insight so crisp and shiny that you'll remember it for the rest of your life.

Raising this kid is a group effort. You meet with one other member of what you call the advisory board because she knows more than you do.

She tells you that you overreacted. There was no reason to feel this shaken up. Concerned, yes. Fearful no.

There are two ways you hear this. She works every day with moms like you and kids like yours. She knows her stuff. So yeah, it's reassuring.

But you highly doubt that a phone call like this has ever come close to her home. Statistically it's not likely. Things aren't perfect for her. They never are. But a scenario like this? Probably not.

You kick yourself for not asking. Because if this expert thinks there is something wrong with your response, then you are going to need more information from the expert.

If the expert is not accustomed to phone calls from school which cause distress, then the expert is not the expert. You are the expert. Your report from the trenches should Interest the expert very much. She should listen like you are the only two people in the world.

There is a chance that the expert has gone through something similar. It's hard to imagine because this is an expert and also a parent. This is an expert-parent.

But maybe you are wrong and she has walked the walk. In that case, here is what you will tell her.
  
She should pull her chair closer. She has earned her audience of one. You will be all ears and you will hang on her every word.

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Talking With Me About Stimulant Medication
Welcome To Holland 

Talking With Me About Stimulant Medication

I've had experience talking with people about stimulant medication. I've had experience reading what people have written about stimulant medication. I've had experience reading Facebook posts about stimulant medication.

I have five years of experience supporting, managing, teaching and observing someone who takes stimulant medication.

Previous to and overlapping with that, I had several more years of experience supporting, managing, teaching and observing someone engaged in occupational, speech and language therapy and social skills group.

There are people I would like to talk to about stimulant medication. There are people I would not like to talk to about stimulant medication.

Now I have some rules for myself around talking about and reading about stimulant medication. They are the same rules I have for talking about and reading about ADHD.

This is not a 10 Things Not To Say list. Those lists bother me. They assume everyone is the same. This post is about my vantage point. That said, you might relate it to your particular situation or learn a few things. Any comments you make might teach me something too.

If you are a psychiatrist, psychologist, pediatrician, neurologist, neuropsychologist, family practitioner, nurse practitioner, developmental pediatrician or internist with experience working with those who take stimulant medication, then I would like to talk with you about ADHD and stimulant medication.

If you currently take stimulant medication I would like to talk with you. If a close family member takes stimulant medication then I would like to talk with you. I would like to hear what you have to say whether the experience has been good, bad or indifferent.

If your name is Dr. Ned Hallowell and have written a book called Driven to Distraction then I would like to talk with you. I also like to read what you write about ADHD and stimulant medication. You are welcome to contact me for conversation at any time.

If your children are exceptionally well behaved and you are wondering why all these kids are getting drugged up I have a feeling that a conversation about ADHD and stimulant medication would not go very well. It would be like me having an opinion about team sports. I don't play team sports. My kids don't play them. It didn't take. So I don't go around giving opinions on neighborhood baseball teams.

If you don't know anything about ADHD or stimulant medication and would like to ask me about it, I would welcome that.  If you are asking in the spirit of greater understanding then I would be more than willing to participate.

But if you have a lot of preconceived notions that you are very invested in, it might not be a satisfying conversation for either one of us.

If you like comparing carefully prescribed stimulant medication to crack, illegal amphetamines, speed, espresso, cold brewed coffee, tranquilizers or dark chocolate then it is unwise for me to engage with you on that subject.

If you have accidentally or purposely tried a tiny bit of someone else's stimulant medication and you yourself do not have ADD or ADHD, then I would love to have a conversation with you and compare notes.

If you are currently contemplating treatment for yourself because you've been struggling and these struggles are pointing you and your doctor to ADD, then you are welcome to talk with me. There are many people who learn more about themselves as adults. Adults who are self aware, change course and seek help are brave adults. I'll talk carefully with you and mostly listen.

If you are wrapping your mind around helping a child, then I know that in spite of what other people say and write that this is almost always a difficult decision and a multi-tiered one. I will walk on eggshells and you'll do most of the talking.

If you are a physical therapist, occupational therapist, speech and language pathologist or special education teacher with experience in this arena you are people I admire. I always want to hear what you have to say.

If you are a classroom teacher I like talking to you. You see a high volume of kids every day. That alone is worth the price of admission.

If you are Judith Warner and you have written a book called We've Got Issues: Children and Parents in the Age of Medication then I would like to personally thank you for writing it. You would be a person I would enjoy talking to about stimulant medication and ADHD.

If you are writing a book and want to say something about ADHD or stimulant medication, then do deep research and talk to real people walking the walk and the people who work with them. Otherwise, people like me see right through your book or article.

If the words Adderall Nation have crossed your lips or peppered your writing then you will find a lot of like-minded company, just not with me.

If you have no experience with this, whether you are a grandparent, a journalist, a friend, or a public figure, be humble. Own your inexperience. It's important to know when you are out of your depth. Know that you don't know.

If you are wondering if this person or that really needs stimulant medication consider that they may look like they don't need stimulant medication because they are in fact on stimulant medication. When they are not on stimulant medication is when they look like they need stimulant medication.

Think about it. There is beauty in this logic.

If you are thinking that your generation was better because nobody needed stimulant medication when you were coming up or when you were raising kids I find a conversation with you will be like talking to a brick wall.  There are gaping holes in what you are saying but its better to agree to disagree and change the subject.

If you feel the need to point out that there is no ADHD in France, and that French mothers are doing a categorically better job of parenting than American ones, then I don't want to talk with you about stimulant medication or ADHD. I will no longer read what you have to say.

If you are not a parent at all but have opinions about the use of stimulant medication in children then maybe you'd like my opinion on stuff I know nothing about—how about those Yankees?

In addition to all things already mentioned, I am skipping any conversation, article, podcast or reference to the Marshmallow Test. For personal reasons I have adopted a no Marshmallow Test policy.

The elevator speech version of the long-winded stuff I just wrote is this. If you are in the trenches, I'll talk to you. I'll read your book. If you are not in the trenches but know you are not in the trenches them I'll talk to you. All others, no. I'll talk to you about other stuff. Just not stimulant medication and ADHD.

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Subtract One

It is always better to be slightly underdressed.

Coco Chanel

A lot of what we see, read, hear and consume is about adding. You need to add more servings of fruits and vegetables. You need to add an exercise plan. You need to add some key pieces to your wardrobe or a new positive habit.

And so it is with subtracting. You need to cut calories. You need to de-clutter and get rid of your stuff. You need to embrace a less is more attitude. Edit your Facebook friend list. Purge negativity.

This post isn't about either of those ways of adding or subtracting. This post isn't about Common Core Math either.

This post reminds me of an old allegorical piece of advice by Coco Chanel. I had trouble finding her exact words online - there were many different versions attributed to her. The gist of it is that a well-dressed woman puts on all of the clothes and jewelry she wants to wear. Then right before leaving the house, she looks in the mirror and removes one item.

She does not mean one shoe, a purse or a dress. What she means is an accessory. So if the elegant woman is wearing a necklace, earrings and a bracelet, maybe she removes the bracelet. Or she keeps all the jewelry and removes the silk scarf.

Just because I quoted Coco Chanel once and paraphrased her once does not mean that I admire her. But even if a person is a Nazi sympathizer and a terrible anti Semite, they have small pockets of usefulness and even wisdom.

Coco Chanel is not a person I would want to get to know, but she was a fashion expert. I am not a fashion expert and I am not anti-Semite. I am not nearly as well dressed.

This is not about clothes. It is about time. For today's purposes, it is about what we call leisure time. It could be applied just as easily to any old time. But I'm starting small.

It's the weekend. Or a vacation. It's a free evening or a wide swath of time when you are not at work. Whatever it is, it is a time when you would like to catch up on a few things and also have some fun.

So you make some plans. This is a good idea.  If you don't make plans, time will just be whittled away.

Some people make just the right amount of plans for that specific day. My mother does this really well. I like to think I do too. But it took some trial and error and a learning curve for me.

I got good at it. That's why I'm giving advice. If you're already good at it, you can stop reading now and go do something else.

Here is a weekend scenario.

You plan a Saturday. You'll get up early to play golf with friends you haven't seen in a while. You'll have lunch at the club. Then you'll swing back home to take Billy and Tommy to baseball practice and while they're with the coach you'll stop by the gourmet market for provisions for tonight's barbecue. You'll drive back and watch practice for a few minutes, and take the kids home. Then you plan to jump in the shower, crack open a beer and man the charcoal in time to greet your friends and their kids for some adult fun and conversation while the kids play together.

Maybe you're energized by this day. Maybe you've got this time management thing down.

Or maybe on closer examination, you aren't so happy. You feel frazzled. Your partner is angry because you were 20 minutes late in picking up the kids and in your haste you forgot the beer for the barbecue. Or maybe everything came together fine, but you didn't bet on the traffic and the shower became a casualty. You feel hot and sticky and somewhat grouchy for the rest of the day.

You can't wait to go to work on Monday because the weekend of relaxing activities has left you feeling exhausted.

Here's another scenario. You plan a romantic long weekend trip to NYC. It's a beautiful day and the weather is perfect. You surprise your partner with a day of fun including a view from the top of the Empire State building, a stroll through Central Park and an exploration of Chinatown topped off with dinner. After that a cab ride to the theater district for the hottest show.

The whirlwind may be perfect for just the two of you. Some people are invigorated by this wall-to-wall activity.

But maybe your partner wanted to linger at one of these places. Or it's actually over-stimulating for both of you. You find yourselves bickering at dinner, and secretly wanting to go back to the hotel and bag the Broadway play.

Add a child or two to the above plans and expect some meltdowns.

This is supposed to be fun.

If you're enjoying yourself most weekends, having a sense of accomplishment and rejuvenation, are feeling good and refreshed after an evening out, then keep doing what you're doing.

But if you are miserable, your friends are mad because you're always late, your kids aren’t having as much fun as you imagined, you've over-complicate and over-plan,  you wonder where the time goes, the neighborhood association is complaining because you never cut the lawn, dinner is always sneaking up on you, you have a pounding tension headache on vacation, and the office feels like a spa after your ski excursion, then I have a simple solution.

Make your plans for the day. Then remove one thing from the schedule.

There are fancier ways of managing your time. I'm suggesting something simple.  Tweak later when you're better at this.

Subtract something. Just one thing. It’s the little black dress of time management and it will change your life.

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Welcome To Holland

 I'm sitting in a hospital room at NYU Medical Center with Jacob on my lap. I'm reading him some stories and entertaining him. He's 18 months old.

Jacob is in for chemotherapy. As far as hospital stays go, this one is pretty routine. I know I sound crazy. How can any hospital stay with an 18 month old possibly be routine? Before any of this happened I would have said the same thing.

Life has settled into a pattern - a pattern that is distinctly childhood cancer style, but a pattern nonetheless. It's not like watching ER or Gray's Anatomy where dramatic things are happening all of the time. In our case we have these days that are fairly predictable and even banal in their own way, punctuated by unexpected crises. There are also planned challenges like MRI scans, surgeries and oncology meetings. These are all scary.

Compared to a sudden spike of fever, a zero white blood cell count, or a fall from the crib - yes, this happened in the hospital - this chemotherapy admission feels okay. This is regular chemo, not stem cell transplant chemo.

I do Jacob's naptime routine with him and put him down in his crib. Predictability is very important when raising toddlers. I'm replicating as many of Jacob's household routines as I can in the hospital. I step outside of the door for a few minutes to let him settle himself. Then after he's asleep I come back in and fold myself into the armchair in his room.

I'll never be a regular mom. I say to myself. This thought comes to me unbidden, and clear as day.

It isn't coming from a sad, feeling sorry for myself place.  Things are going well, under the circumstances. Jacob has had only clean scans since the surgery. His prognostic indicators - terminology his neurosurgeon and oncology team like using - are excellent. Jacob is expected to survive.

Jacob is easy-going, sweet and sociable. He keeps me very much in the moment. He enjoys himself in almost any circumstances. He lifts me up.

There's more happy news for our family. I'm in the early stages of pregnancy. There's going to be a brother or sister for Jacob.

I'll never be a regular mom has no pity attached to it. It is simply an observation. Even if all goes well with Jacob and the new baby - and I'm feeling optimistic - I am forever changed by my experience. It isn't good, it isn't bad, it just is. I take it on with the same steadiness that I've accepted many things as of late.

Fast-forward several years. Jacob has since died, a reality I'm not getting over so much as imperfectly learning to live with. Jacob's little sister has been joined by a brother, born after Jacob died. Both children are healthy and both children are in school.

My thought in the hospital room turned out to be strikingly prophetic. I'm not a regular mom. I notice this in various ways. When I see families - intact families - with three children, I get a little wistful. Otherwise, I have the same equanimity about it.

I'm grateful to have regular mom friends. In spite of my sad story, other moms with healthy kids have befriended me. These women - the close friends, the acquaintances, the acquaintances that later turned into close friends - help me feel that I am more than a walking worst-case scenario. I am more than a cancer mom.

In my travels I've picked up a free magazine called Special Parent. One of my children seems so very gifted. His ability to learn and think deeply is already apparent. At the same time, there are qualities to this child that seem different from all other children. Things that other children learn more slowly, he learns quickly. Things that other children learn more quickly, he learns more slowly.

This child is connected and loving, kinetic, sweet and endlessly curious. There is an enigma like quality to him. He is an exciting child. With him, I learn to dig deep. I learn a patience I never knew I had.

The magazine feels safer than the Internet. The magazine is a place I can dip my toe in. The magazine is where I first see this:

WELCOME TO HOLLAND

By 
Emily Perl Kingsley.

©1987 by Emily Perl Kingsley. All rights reserved 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." 

But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I ignore everything else in the special needs magazine except for this. But I read Welcome to Holland three or four times. I rip it out of the magazine and display it on the magnetized bulletin board above my desk.

I'll never be a regular mom is what I said. Welcome to Holland is what another mom said. She used a lot of words. I used a few. But really, we are both saying the same thing. Welcome to Holland means someone gets it.

There are times I privately call Welcome to Holland moments. I remember my journey with Jacob. The moms I met in support groups. The oncology nurse I still feel close to.

Jacob has landed me in Holland. Other circumstances will keep me there.

In spite of the analogy, Holland is no vacation. One afternoon, my child is having a hard time on the subway. An older woman lectures me then calls him a retard.

Then there are moments I wouldn't trade for the world. When you're living in Holland a single conversation can turn everything around. Sometimes that conversation happens at the IEP meeting. Other times it's the checkout line of the grocery store.

 I've learned that having a child with cancer is not always enough commonality between myself and someone else. Neither is having a child with special needs. It's like anything else. Sometimes you connect. Sometime you don't.

And so it is with Holland. Not everyone likes Welcome to Holland. My liking it might have something to do with the way it entered my life. I happened on it accidentally. That made it my discovery, on my terms.

Some other moms were handed a copy of Welcome to Holland by someone with good intentions. The person with good intentions and four healthy children has no business handing out articles about Holland to a Cancer Mom. She hasn't been to Holland. Or she hasn't been to our part of Holland.

Everyone's Holland is different.

I'm on my way home from dropping my son off at his new school. It's raining. I maneuver my way along the crowded sidewalk wielding an umbrella. I see a teenager, slightly older than my son, running awkwardly with plastic bags affixed to both feet.  I take in this funny scene with affection.

This kid came up with a novel solution to the problem of pricey, brand new sneakers and rain. I imagine him arriving at school, hurriedly removing the bags, then coolly walking to class. He looks nonchalant, but feels like a celebrity.

This kid does not have cancer. He's the very picture of classic male adolescence. He's not even my kid. Welcome to Holland, I say anyway. 

Binders

There are important things going on in my life. Chances are, every important thing has a file to represent it, and a place in my filing cabinet.

If something is extremely important to me, I create a binder for it. Once a subject has a dedicated binder, it is in the upper echelon of stuff I am working on. It is a level above the materials I house in the filing cabinet. It is Binder Worthy.

Binder Worthy means that the subject would benefit from an intensive Staples office supply treatment.

I have plastic translucent folders in a fetching palette of spring colors. I have dividers for different categories. I have clear plastic pages for display. I have zippered pouches that fit into the binders for small miscellany. I have labels and Sharpies. The act of creating and maintaining a binder is not only useful, but an exceedingly enjoyable experience for me.

I remember the moment it all started. It was at a middle school fair held at my kids' elementary school. I organized the whole thing.

I arranged for some parents whose children were successfully placed in good middle schools to come and talk to families. One of the parents was a smart and organized dad who managed to handle the placement of boy/girl twins. In NYC. In public middle school.

During his presentation, the savvy dad showed us a middle school binder he made. I'll never forget what he said. He recommended making a binder and carrying it around at all times. The reason, he said, was that one never knows when a middle school related opportunity could spontaneously arise.

I was hanging on his every word, and by the next day, I'd started that binder. That's what kicked this whole thing off. Now I have several active binders.

One of my current favorites is my apartment renovation inspiration binder. The first thing I want to mention is that I love the outside of the binder. It’s black, with a white Apple computer sticker affixed to it. The Apple sticker was lying around our desk for a long time. No one ever stuck it to the computer. One day, I slapped it on the binder. It makes for a visually compelling graphic statement.

At first this binder was for Noah's IEP. If you know Noah at all, a binder with an Apple logo front and center is extremely appropriate. Unfortunately, IEP records and materials soon made a larger binder necessary. I re-purposed it once Jeremy and I started talking about the apartment renovation.

Every time I see something inspiring for my apartment reno, I tear it out and display it in the binder. It is sort of like an analog version of Pinterest. It does not have the same sharing capacity. That said, I showed it to my mother the other day. She said that now that she's looked at my binder, she will send me things to put in there if she sees anything good.

I have another binder devoted to creative inspiration. This is a broad category and can include anything from clippings of art I love, to quotes, to articles. It is important that the act of leafing through the binder be an uplifting and highly aesthetic experience.

The high school binder is very active. It has helped me place both kids in an appropriate medical school program that fits their interests and needs. Did I just say medical school program? Sorry! I meant to say New York City Public High School.

Having a different color-coded section for each school with notes, brochures, and copies of application materials gives me a peaceful feeling. Once I'd completed the process for Hannah, I repurposed the binder for Noah, with all different schools, but the same beautiful colors.

The IEP binder I have for Noah is something I started when he was in 5th grade. This is a serious binder. It functions somewhat differently than the other ones.

For those of you who don't know the parlance, IEP stands for Individualized Education Program. Noah is a very interesting person. Like many interesting people, his skill sets are somewhat uneven. Some of his difficulties were causing learning and other issues in school.

The 5th grade IEP binder contained private evaluations I had done from occupational and speech and language therapists as well as a child psychologist. I had every phone call with the school documented and filed in there. I had examples of Noah's work, handwriting samples and copies of report cards with plummeting grades.

The school psychologist had a hissy fit when our guidance counselor said that I wanted to get Noah an IEP. I'd heard this song and dance before. Noah is very smart. This particular school did not traditionally like giving IEPs to students who were above grade level for reading and math.

I saw where this was headed and I wasn't having it. I'd been called into an impromptu meeting with the school psychologist and guidance counselor. I took my binder and plunked it on the desk with an audible thud. We exchanged pleasantries. I smiled. I never raised my voice.

I've stopped working so I can focus on my son, I said. I have all the time in the world to pursue this IEP. This is my full time job now. This binder is full of private evaluations. This binder goes where I go. I'm available 24/7 to pursue what's right for this child to have the support he needs going into middle school.

I leaned over. My son has ADHD. His mother most certainly does not, I said.

I had that IEP in short order and Noah is now a successful 8th grader at a different school, with a smaller IEP binder and the support he needs.

The recipe binder is my eldest one. It lacks a certain finesse that the newer ones have. I'm thinking of some new ideas to make it more efficient and attractive. I'm in no hurry because it’s functioning well. As binders go, it could be a lot worse.