When Your Autistic Kid Is Different: Is It Okay?

Our town held an Easter Egg party today. Of course, this being Boston, it’s snowing heavily, so the event was held inside. Hubby had offered to give me protected time so I could exercise and study, and I took that offer and ran with it. Literally, as he and the kids pulled out of the driveway, I went running.

I love running in inclement weather. I feel like a female Rocky Balboa. I had my high-energy music mix going, and I was running to the beat, feeling totally badass….

Then, Hubby called. “It’s not going so well,” he said, sounding defeated. Babyboy was refusing to even enter the hall where all the festivities were going on: face painting, arts and crafts, photos with the Easter Bunny. Instead, he was rolling around on the ground in the foyer. Some friends of ours who were there with their own child were watching Babygirl in the great hall, but Hubby felt bad about it.

I was about a mile and a half away… I suggested to Hubby that he grab some drawing paper and crayons and let Babyboy color in the hallway, and meantime, I ran over. I mean, I ran.

Yes, the place was loud and absolutely packed with families. With the heavy snowfall outside it felt like a crowded ski lodge on a school holiday weekend.

But, it wasn’t that big of a disaster. Babygirl and her little friend were having a great time; luckily, and thank God, his parents are good friends of ours and lovely people. Meantime, the ladies working the event in the foyer let Babyboy pick out a bunch of Easter eggs with prizes inside.

When Babygirl came out of the hall wearing cardboard ears and with her face painted bunny, Babyboy didn’t act sad. He wasn’t feeling left out. He got eggs with prizes.

When we left, Hubby said we should have known it wouldn’t go well for Babyboy, and maybe not brought him. My feeling was, he had an okay time, in his own way. So, he hung out in the foyer and did his own thing. He still left with eggs, and he didn’t seem upset.

We want him to become educated, employed, and a productive member of society. We want him to live up to his potential, and to be self-assured and happy.

Should we try harder to assimilate him, work towards more socialization, push his boundaries? If let him be on the periphery of parties, at the edges of events, will we be somehow stunting his development?

I believe we can only go so far with an autistic kid. He’s going to be different from most other kids. But if he’s happy, can we just let him be?

Interested to know what thoughts people have.



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Drowning In The Air: When Hospice Would Have Helped

This week was completely devoted to an Internal Medicine review course. My whole schedule was blocked, and I rode the train into town each morning to sit in a lecture room, sip tea, and soak up the knowledge.

It’s been wonderful to sit and be a student again. But, towards the end of this morning’s lectures, I started spacing out. Speakers were speaking and I kept losing track of what they were saying. I think my brain is full. All the rest of the day, my mind wandered. I wasn’t worrying about work or home; rather, I was remembering a handful of past cases.

The talk that spurred the memories was about hospice and palliative care. I’m a fan of both, but I feel like it’s much harder to get patients to either than it should be. Very unfortunately, I’ve seen and been a part of some not very good hospital deaths….

Well over twenty years ago*, I was volunteering in a hospital emergency room. I was an eager pre-med. The ambulance brought in this guy. He was old but not that old, barrel-chested, sitting up and leaning forward, hands clamped on the edges of the gurney, gasping. He was repeating, over and over: “Oh God. Oh God. I’m not ready. I’m not ready. Help me. Help me. Oh God. Oh God.” His face was blueish. He had oxygen on, but it wasn’t making a difference. The emergency attending flipped his chart shut and said, “This guy’s a no-code. Let’s get the family in to say goodbye and get him some morphine already.”

In those years, I lived for doctor TV shows and soaps, and in all of them, everything happens in the emergency room. Patients and families hang out in those Hollywood-spacious rooms forever. Diagnoses and prognoses are made, babies are born, affairs are had, drama happens, and people die with much fanfare. Of course we know that’s all a load of bull. Right?

Well, this guy went out like a TV show. He was some Italian patriarch, dying of emphysema. I can’t help but think that someone in The Family had it in for him, because this was a slow, torturous spectacle. No less than about twenty people paraded through that room to say goodbye, and him all the while gasping: “Oh God. Oh God. I’m not ready. I’m not ready. Help me. Help me.” But the calling hour went on and on, solemn-faced folks shuffling through, and no one seemed upset that he was drowning in the air.

At some point the ER doc got close enough, and the guy’s hand shot out. He grabbed the ER doc by the collar and hoarsely commanded, “Get me the goddamned respirator.” Some flurry of confusion ensued, with family and ER staff all in a tizzy. But the guy said, clear as day, “I changed my mind. Get me the goddamned machine.”

So anesthesia was STAT paged and the ICU staff descended upon the Italian patriarch, who was intubated and sedated, never to awaken again.

The whole scene came back to me during this hospice/palliative care talk, when the speaker asked us, “If you were diagnosed with a terminal illness with a limited life span, would you want to be referred to palliative care and hospice right away?” The whole room of about two hundred practicing physicians nodded affirmative. Hell, yeah. Give me enough morphine, and let me stay home. 

The speaker strongly recommended that we all read Atul Gawande’s book, Being Mortal. I cannot wait to read this, but I’m holding off until after I pass the boards. It will be a treat. I keep hearing about it and reading excerpts and I think it’s going to be an excellent read.

Has anyone read this? And, if you were diagnosed with a terminal illness with a limited life span, would you want to be referred to palliative care and hospice right away?


A book to read: http://atulgawande.com/book/being-mortal/



*These old cases are true. These are from literally two decades ago. Any identifying information has been long forgotten, as well as some details; my imagination has filled some of this in. I trained in five different states and innumerable hospitals, and I’m not particularly worried that anyone will recognize themselves or their family members.


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Can we just stay home?

It’s been a long work and school week. Today, Saturday, I figured we’d be taking the kids somewhere fun, like the aquarium or a museum. So when the cat jumped on my head at dawn, I went downstairs, got myself some coffee, and studied. I’ve got my medicine boards in a month, and I’m cramming; I wanted to get it out of the way before family time.

But when the kids woke up, they didn’t want to go anywhere. Hubby and I threw out ideas: all of the cultural options, and then even, the pizza shop? the donut shop? the wildlife zoo?…. the grocery store?

Babygirl was a grumpy sleepyhead and just wanted to sit in my lap with all of her stuffed animals in her arms. Babyboy never looked up from his legos, and never changed his answer:

“I want to stay here and play. Can we stay home?”

Well, okay then.

Both kids are in school five days a week, and this is their first full week without a snow day or a holiday in ages. Yes, it’s preschool, but it’s actually pretty impressive, the work they do. Babyboy’s on an IEP (Individualized Education Program) in his Special Ed classroom, including speech and occupational therapy. We know they work him, because he’s made such amazing progress. He loves his teachers, he’s engaged; his eye contact, speech, and transitioning are all majorly improved. Potty training, not so much, but hey, we’ll work on that.

Babygirl’s private daycare has a curriculum; at her orientation, I flipped through the colorful spiral-bound tome with wonder. Like, are you kidding me? No. Every day her teachers email us a photographic review of her class activities and projects, usually based around the same educational theme. This week was the five senses. It’s awesome.

These guys deserve days of nothing but play. Typically, if we’re going to be in, I have some activities or crafts planned. Today, nada. My head’s tied up with exam review questions.

So, Hubby decided it was the perfect day to make sauce. Mid-morning, he headed out to the grocery store to buy all the ingredients for his mom’s famous tomato sauce with braciole and meatballs. Braciole is thin meat rolled with a pesto of sorts, tied up and browned then slow-cooked in the sauce until it’s falling apart. The meatballs cook in there too, and that’s where the sauce gets all its flavor. Babyboy helped with the prep, but Hubby and I spent most of the day on this project. That, and taking turns with the kids, playing referee, putting Legos together, reading books, or finding shows on Netflix.

Hubby, Babyboy and I ate meatballs for dinner, all of us at the kitchen counter: Babyboy standing on a chair, Hubby and I leaning with our glasses of wine. Babygirl refused to try any. She has never eaten meat, ever. Nor tomato sauce. Nor pasta, for that matter… She roamed, alternately painting and nibbling chunks of apple and goldfish crackers. We figure, she’s growing and developing normally, so, let her be.

Bathtime/ bedtime was the usual melee. A gazillion books. Can we read one more Dr. Seuss book? Just one more? 

Finally, the kids are asleep. The sauce is done, an amazing tribute to Grandma S’s original recipe. I’m brain-fried, and can’t answer another clinical question.

And that was our Saturday home.




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On Lent, Drugs, and Letting Go

I usually hesitate to write about things that could be deemed overly religious, because I am not overly religious. We didn’t join our left-wing liberal little church community for the “churchy” part, but rather, for the “community” part. Where else in your life can you choose your extended family? And have them actually be really cool?

So, this Lent thing. I remember being a school-aged kid at Catholic Sunday School, and we all needed to choose “something” to give up for Lent. Everyone gave up some candy or a TV show. That concept has stuck with me, and everyone else, I think, as many people I know gave up “things” like social media or carbs for Lent this year.

And me too. I announced that I was giving up chocolate, not as a Christian gesture, but more as a test of willpower. I’d become rather free-handed with the economy-sized bag of dark chocolate baking chips in the pantry…

But an experience in clinic recently made me sit and think about what Lent is. Seriously. See, we have this new program called the Prescription Monitoring Program, where we can (and are required) to look up and review the controlled substance prescription history of any patient for whom we are about to write a new controlled substance prescription.

Why? Well, we are in the midst of an opiate abuse epidemic, and it’s largely our fault. Yes, us, the prescribing doctors.

Our newspaper recently chronicled how the opiate addiction and drug trade has ruined several towns. Read the obituaries and peruse the young faces, kids who died “suddenly and unexpectedly”. Case in point, our nephew Christopher in October 2013… so, so tragic.  First responders now carry Narcan as a matter of course. On the very first day one nearby town implement this, police officers responded to a call of an unconscious man at the railroad tracks. His friend thought he’d been using heroin, the police used their brand-new Narcan, and, voila! Resurrection.

Loose and unregulated prescribing combined with powerfully addictive opioids and a steady stream of cheap heroin from abroad created this mess. Doctors were writing all kinds of pain medication prescriptions without knowing who was getting what from who else. This stuff hit the family medicine cabinets and then the streets and created dependence, as well as an illicit economy. When the addicted got priced out of the pills, they turned to heroin. And so on…

Many changes have been made even in the past six years that I’ve been an attending. We used to be able to call in a short supply of narcotics on the phone; hence, all weekend long, patients would call saying they’d lost their prescription, et cetera, and without easy access to the electronic record, there was no way to verify what was a true story. We all felt like we were being fleeced, but could never prove it. Now, there is no way to call in controlled substances, at all. Weekend call has improved significantly!

Back to the Prescription Monitoring Program (PMP). We all had to be verified as providers and issued a password to access the site first, so it took some time. I’ve only recently been able to log on and review my patients’ prescription history. But, since I have, I can now see every single controlled substance prescription for anyone, when and where it was filled, and who wrote for it. Hence, I’ve discovered a few cases of questionable, or even blatantly abusive, narcotics use.

Recently, I “caught someone out” on the PMP. They’d apparently gotten a bunch of pain meds through various other providers.* I got so angry. In my head: You were LYING to me! My first reaction was to feel betrayed and cheated.

But, for some reason, I let it be for awhile. In fretting about what to do, I let the anger part go, and tried to think more like a physician. I remembered our nephew: addiction is a medical and psychological disease that requires medical and psychological treatment. Lying is a part of the disease.

I’m not especially well-trained to manage addiction. So I reached out to a specialist, asked for advice. We put together a plan. The specialist gave me the language that I’ve used now several times: We believe that you have real pain, and we want to help you, using the safest and most effective treatments. We want to work with you, and this is what we have to do in order to be able to work together. Face to face with the patient, I was nervous as I reviewed the medication contract, as I asked for a urine for tox screen and drug profile. But it went okay.

Out of all of this, I was most proud of the fact that I didn’t act out of anger. I didn’t fire the patient. I let go of judgment and acted based on practicality. I’m not always able to do this. Our friend Steve, who passed away last week, really seemed to have this quality, this grace, that I’d like to aim for.

What does this have to do with Lent? Well, if Lent is about giving something up, I’d like to try to give up anger and judgment. Will that happen? Probably not completely. Hey, I’m human.  But it’s a hell of a lot more significant than chocolate.

*Not one particular case, but actually more than one, and details have been omitted or combined to protect privacy.




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When A Great Man Dies

Disbelief and denial, that’s where grief begins. When we heard the news, the doctor in me had to know what happened. What could so suddenly fell this man, the rock of our church? Over the past five years, we’ve seen him as tall and strong, calm and smiling, never stressed, always present… but most of all, as a constant in our lives, a model of being.

What happened?

Fingers shaky, I dialed the rectory. Sketches of details, thirdhand: driving home with his teenage daughter, said he felt sick, pulled over, passed out. She called 911 on her cell, EMTs came. CPR at the roadside, continued to the hospital, over an hour of trying. They couldn’t get him back.

We can’t get him back.

What a loss. Our church held an impromptu prayer service Friday evening. This was really a chance for us to hug, cry, and talk about it, to talk about Steve and what he meant to each of us. The theme of loss came up again and again… we were not the only ones who counted Steve as a positive role model. His warmth, strength, and ready guidance made him a friend and father figure to many.

But, there was also thankfulness, thankfulness that we had had the opportunity to know him, to have had his leadership and example. He met challenges with an easy smile and steady demeanor. He eased tensions, smoothed ruffled feathers, averted drama. These are special qualities.

Hubby and I spoke of this yesterday. We’ve both been working on our tempers. There’s times that we flare at the kids, and at each other. Late workdays plus overtired children equal temper tantrums from everybody. We know we both need to learn to step back, breathe, and think.

We were in the car, driving home from dinner with friends, quiet. I thought of this and said, out of the blue: “You know those bracelets that people wear that say WWJD, like, What Would Jesus Do?”

Right away, Hubby smiled, nodded, and said,  “What Would Steve Do. I know. I thought of that too.”

“Yeah,” I said. “It would help, when the kids are driving us nuts. To think about Steve, how he would react… We’ll all be the better for it.”

“I know, I know,” Hubby agreed, and we drove on.


When a great man dies, for years afterwards, the light he leaves behind him illuminates the paths of others. – Henry Wadsworth Longfellow

Steve, we will always look up to you.  Obituary: http://www.dolanfuneral.com/2015/02/steven-taber/

Steven Taber. For full obituary: http://www.dolanfuneral.com/2015/02/steven-taber/

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Nachos and Cookies For Lunch…Bad Mommy, or Healthy Moderation?

The kids and I had homemade nachos for lunch today, with girl scout cookies for dessert. Later, for an afternoon activity, we made and decorated sugar cookies. And no, I’m not  concerned about any of us. As a matter of fact, the kids had ice cream sundaes for lunch yesterday, and I’m still not worried.

The unconventional diet is only partly because we’re in extended survival mode, trudging through the Snowpocalypse, with Hubby away for what feels like the past month. Honestly, we allow wacky deviations like these at baseline.

The reason I’m not worried? I know that if our kids’ diet is represented by a pyramid, then not just the base, but almost the whole pyramid is made up of berries and yogurt, grapes, apples, oranges, bananas, macaroni and cheese, sunflower butter and jelly sandwiches, baked pea or lentil puffs, and Cheddar Bunnies.  Babygirl is, apparently, vegetarian, as well as finicky… I can safely say that her pyramid is mostly fruit, yogurt, and Cheddar Bunnies.

They’ve never eaten at a fast food chain, and only occasionally get things like hot dogs and fries or pizza. (Actually, Babygirl won’t touch any of those things anyways.) They’ve never had soda; they drink tons of milk. Yes, they get juice boxes in their lunch bags. Neither child has an overwhelming sweet tooth, and they enjoy dark chocolate or Fig Newtons as much as anything else. Kit Kats, MnM’s, and marshmallows have all served as potty-training prizes, but sadly, neither kid is that interested. (I’d let them eat those things all day if it would get either of them 100% potty-trained!)  They do love the occasional donut run; we make it something special. The girl scout cookies, hey, we’re supporting our local troop! They’re small, and they’re seasonal. Who can resist a Caramel deLite?

I don’t think there’s much nutritional difference between nachos and cheese, a grilled cheese sandwich, pasta with butter and parmesan, or cereal and milk. It all breaks down to the same molecules: some carbs, some dairy protein. We try to buy whole grain and organic dairy (today’s nachos were gluten-free quinoa and brown rice chips with organic cheddar cheese), but we’re not sticklers. Lower-sugar juice boxes, free range eggs and whole wheat Goldfish crackers may not be that different from their nutritionally and financially cheaper versions, but we feel a little better.

Hubby and I love to cook, and we let the kids help. Nothing fancy: soups and stews, salads, grilling. With plastic knives, they help chop cucumbers, melon, strawberries, pineapple, whatever. We bake plenty of cookies, brownies, and rice krispies treats, but in all honesty, they seem to enjoy mixing the batter more than eating the final product. (Ergo, our church and my office enjoys a regular supply of homemade sweets!)

The kids also help with shopping for groceries, especially with picking out produce. Babyboy continues to be obsessed with eggplants and peppers, insisting that we buy these every time. He’s never even tasted these things, but no matter. He knows what they are, and sees us eating them. Ten bucks says when he’s older, he’ll try these, and like them, too.

On the ice cream sundaes for lunch yesterday, there is a story there. It was Saturday, and I was solo with the kids. I found out that there were two last-minute openings at my gym’s child care center, and I dragged them there so that I could exercise. It was probably the coldest morning yet, and they were so, so good. I was able to get them dressed, in all of their crazy winter gear, in the car and to the gym within thirty minutes: a minor miracle. I dropped them in the childcare room, noting that the two “sitters” were very young and especially crabby. Still, I said bye and got myself a much-needed workout.

When I picked them up, Babyboy was sitting alone in a corner, quiet and sad. I asked him what was wrong, and he said, so seriously: “Mommy, please don’t leave me here again. I don’t like these teachers.”

The girls said they’d had to put him in time-out for not sharing. I’m sure the time-out was appropriate, but he’s a special kid. It wasn’t fair of me to stick him with people who probably have no training in autism spectrum behaviors. He needs things explained, really spelled out, and he responds best to a kind style of discipline. I felt like a selfish jerk.

Since we then had to go to the local grocery, I told him he could get a special treat, and he said he wanted ice cream. To make it really fun, we bought Hershey’s syrup and whipped cream along with the Brigham’s classic strawberry. Hence, my kids ended up having ice cream sundaes when we got home, and it only made me happy, because they were happy.

I did ask a fellow mom if she thought that was a “bad mommy move”. Probably knowing Babyboy, and that both of our families eat in the similarly basically healthy way, she was fully supportive, and shared that she’d had a hard morning, and so served something “fun bad” to her kids for lunch too.

In the big picture, our kids are normal weight and developing fine. They’re reasonably physically active, even in this endless winter. We’ve gotten them outside to play almost every day, even when there’s been a blizzard or deep freeze (if only for a few minutes). Today, Sunday, the kids and I went out icicle-hunting and built snow forts in the comparatively balmy 36 degree morning. Hubby and I strive to run, ride the spinning bike, or go to the gym whenever we can, hopefully setting an example of prioritizing and enjoying physical activity.

I think we parents can go too far in either direction with our kids’ diets, from stressing about an all organic, plant-dense menu with loads of restricted or banned foods, or, ignoring the whole idea of nutrition and allowing daily intake of sodas, fast foods, and sugars. I really believe that the healthiest approach is somewhere in the middle… As they say, everything in moderation, including moderation.

And sometimes, we all need something “fun bad” for lunch.



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My Parenting Skills Plummet with the Temperatures.

My parenting patience is directly related to the temperature. The colder it is, the more frustrated I am. Two kids, three errands to run, ten degrees and windy outside, infinite layers of clothes needed, and zero children are ready in time.

It’s school vacation week, and Hubby is away. Thursday is my day “off” with the kids, so they had to come with me to the animal shelter, the pharmacy, and the grocery store in the morning. For this, our first outing of the day, I managed to stay calm, despite significant delays secondary to a sudden craving for Cheddar bunnies, an overwhelming need to finish a Lego creation, and the wrong socks.

Then, the layers. We can’t even step outside without full gear, including snow pants. These kids cannot resist climbing the mountainous banks, slamming into the snow walls, dumping snow on each other. Just walking from the back door to the car will require me pulling at least one if not two kids out of too-deep piles and cleaning snow out of their necks. I have to bring extra gloves because the first set gets wet within one minute.

So it takes forty-five minutes to get out the door anywhere. We made it to the shelter, the little building dwarfed by the snow in the photo below. The kids love playing with the kitties, helping to brush them, feeding them too many snacks. But then, they get hot, and they want to take layers off. Uh- uh, I said, No way! It took too long to get all those layers on in the first place!

But, they insisted, and so layers came off, with lots of tugging, pulling, and yanking, only to go back on again within thirty minutes. More tugging and pulling and yanking. Ugh.

Once we got home, I didn’t want to go anywhere else. So we stayed in most of the day. Our planned activities were over and done within an hour: we made rice krispies treats, played with modeling clay. What next? Sure, some free-play, Legos and magnetic tiles and talking animals. But really, there was a whole lot of Curious George involved. I know the AAP recommends no more than two hours of screen time a day for kids, but when it’s this cold and annoying out, on goes Curious George.

This evening we had to go out again, and it was much, much colder. The kids again pulled their snow-day dawdle. I froze. When Babyboy went for another snowbank base jump despite my order to GET IN THE FREAKING CAR, I picked him up and put him in the car. I had my gloves off so I could get the kids in the car seats. He was covered in snow, so my hands got wet. He struggled, so it took an extra long time to get him buckled in. My hands were close to frostbitten, or at least, they felt that way; as they thawed, they hurt so badly, I got nauseated.

Of course, I dream of the days when we’ll be able to go outside without putting any layers on at all. I know my parenting skills will improve…



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