Chicken and Children


My neighbors caused quite a stir in the news. They allowed their two children (10 and 6) take a 1.2 mile walk along Georgia Avenue (known above the Beltway as Route 97) from a park in the upscale Woodside neighborhood to their home near downtown Silver Spring, Maryland. For doing this, they were investigated by Child Protective Services and found to have engaged in “unsubstantiated child neglect.” My neighbors, the Meitivs, are part of the so-called free-range parenting movement – a movement that focuses on promoting (as appropriate) a child’s independence and self-reliance. As one person said about the name for the movement, “I like my children like my chicken: free-range.” I understand that these children were picked up by police again this evening.

Free-range parenting sees itself as an antidote to the “helicopter parenting” style that seems to predominate today. A world where parents must sign a permission slip to have a child eat an oreo. I have heard stories from college professors that they are now being contacted by parents of their students to inquire about why they received a certain grade on an exam or a paper, and parents signing off on their child’s courses. So the proverbial helicopter now is hovering past the age of majority.

A number of friends have asked me what I think about the Meitivs decision – whether I think CPS should have gotten involved for letting their children walk home. They are often surprised when I say that while I would not have allowed my children, even if typically developing, do what they Meitivs kids did, I have no problem with it. The fact is that we simply can’t live in a world where we get to continually micromanage and judge the parenting decisions of others. While I would like to believe that people who believe CPS was necessary here are doing so out of a genuine feeling of concern, it is easy to see where that kind of “caring,” is, as the Shins say, creepy. Or even worse, interfering can be actually detrimental to the child.

I think friends ask my opinion because they know that parents of special needs children (particularly those with medical needs) have a special appreciation for this problem. While parents of “normal” children are allowed, in relative terms, a wide berth to raise their children, we are not. From the moment our child is born, the “system” micromanages every aspect of our lives — they obviously need to, because we could not even procreate a “normal” child, right?

One area where this sort of interference is most unwelcome is in the area of medical treatment. Nowhere is the denial that reasonable minds can differ about treatment, and sometimes diagnosis, more dangerous and toxic. Two recent examples of that were the arrest of the parents of a boy with rare brain caner who was removed, against medical advice, by his parents from a hospital and taken to Spain to undergo an “experimental” treatment. It just so turns out, that treatment may have saved him. Or a much more dramatic example is the horrible drama that unfolded for Justina Pelletier, a 14 year-old girl removed from her family because she was originally diagnosed with mitochondrial disease and sent to another institution for some adjunct treatment.  Once there, some new doctor developed the opinion that Justina was not really ill – she had a “somataform disorder,” which is a fancy way of saying it was all in her head. The doctors at the new hospital were so persuasive, Justina was removed from her family’s care, and they were not allowed to see her for almost a year until they raised sufficient money to hire a lawyer and fight back.

My husband and I have occasionally been pressured to do certain things or not do certain things for our children, and we have always governed ourselves according to our own convictions. Watching what is happening makes me wonder, though, if the day will come when someone has enough hubris to try and say that they know better than we do how to care for our children. Maybe that day is coming, or maybe it has already arrived and I haven’t really felt any deleterious effects from it, save being judged. What I do know is that “well meaning” people are often the ones who are the most dangerous and it is them I watch most closely, like a helicopter.

All Lives Matter

There are three men on a train. One of them is an economist, one of them is a logician, and one of them is a mathematician. And they have just crossed the border into Scotland and they see a brown cow standing in a field from the window of the train.

The economist says, “Look, the cows in Scotland are brown.”

And the logician says, “No. there are cows in Scotland of which one at least is brown.”

And the mathematician says, “No. there is at least one cow in Scotland, of which one side appears to be brown.”

-Adapted from The Curious Incident of the Dog in the Nighttime


Today, I took Ryan to Pump It Up.   For those not acquainted with the concept, it is a giant warehouse full of inflatable bouncy rooms that allow you to jump up and down like a trampoline (but softer), slide, or navigate an obstacle course. It is great fun, especially to people with sensory disorders.

We’re on a first-name basis with the manager at the local place, and today, we were welcomed in our usual way by the staff. We headed to the arena, which is usually empty or nearly so on Wednesday afternoons, as most children are in school at the hour we arrive (our children get out of school early on Wednesdays, because the school system believes that teachers need an extra break from our children. They probably do). Today, however, there were two preschool-aged girls in the arena. Ryan went into his favorite bouncer (and there are several choices available), and one of the little girls followed him inside.  Just as an aside, Ryan does not jump at all in the bouncers. He sits in the corner, against a pillow-like vertical column and rocks, bouncing his back against it.

I usually read or do work, so I was somewhat surprised to hear a voice say, “is he aggressive?”

It took a moment to realize it was someone speaking to me.

“I’m sorry?” I replied, still uncertain.

“I’m just asking if he’s aggressive. You know, yesterday there was a group of ‘different’ kids here,” (and yes, the air quotes were hers), “and one of them was aggressive towards my daughter and I had to complain.”

For one minute, I didn’t know what to say. I was just dumbstruck. Was this really happening?  I formulated a knockout punch.

“No, he’s not usually aggressive toward other children. I am really glad you asked that question though, because it would be terrible for you to assume, solely on the basis of how he looks (because you don’t know him at all), that he would be more likely to be aggressive because of his appearance.”

Now it is her turn to look stunned and to be unsure how to react.

I decide to make it easy for her. “I mean, it would be like me assuming that you are more likely to rob me because your skin is dark, right?” Fuming, I promptly got up and instructed Ryan to follow me to the other end of the arena.

Every day, this prejudice plays itself out in my son’s life. He must be mean, aggressive, or “scary,” as children often say, because he looks different. And adults assume he must be intellectually impaired before he ever says a word (there is actually no connection between most congenital craniofacial disorders and intellectual disability, and the vast majority of people with my son’s condition have no intellectual impairment at all). Even with common genetic disorders like Down Syndrome, which used to entail a life of institutionalization, people are receiving better education and healthcare, and are now writing books, modeling, acting and enjoying the right to marry and have families (sound familiar?).

The irony here, of course, is that while people are justifiably bringing attention to racial bias in this country, members of the same racial minorities who are the target of disparate treatment are themselves showing their own biases, and not even recognizing it as such.  If you want to hear a discussion on inherent bias, I highly recommend you listen to “Cops See it Differently” on NPR’s This American Life.

Discrimination against disability is one of the last acceptable “isms” in our society.

Recently, I saw “Black Lives Matter” spray-painted on an overpass on an I-95. Someone struck through “Black” and replaced it with “All.”  I must say, I agree.  And until each of us recognizes our inherent biases, nothing will get better.

Ruthless Preemption

In the past several years, I’ve traveled on area roads from several different perspectives. I’ve traveled as a motorist. I’ve also traveled in an ambulance as a first responder. And more recently, I have been on the roads as a cyclist. Many will nod their heads in agreement when I say that the way people many drive in this area is simply appalling.

In Fire/Rescue, our portable radios are equipped with an “emergency” button. This bright orange button allows us to depress it and to command the attention of dispatch and every other radio user on the air in the County. Obviously, it is intended to be depressed only in scenarios involving an immediate threat to life. Once depressed, if there is no response or a distressed response to the dispatcher, a massive police response ensues.

And once depressed, all other radio traffic on the air is inhibited until the “emergency” is cleared from the radio – a feature known as “ruthless preemption.” Depressing the “EB” button, as we call it, is a way of saying that what is happening to the user is so important, all other communication should stop until the dispatcher deems the situation is to be managed.

Many people (too many) in this area drive with ruthless preemption.

When I was in EMT training at the Academy, one of our instructors, a long-time paramedic in Montgomery County, was teaching a unit on responding to what we call “PICs,” (what the rest of the world calls “car crashes”). He set up a scenario for us – someone blows through a four-way stop, and T-bones another car on the driver side as it proceeds into the intersection. It is rush hour, and the driver of the T-boned vehicle is pinned and has serious injuries. The sky is clear and the wind is low, so you request a helicopter be dispatched to the scene. You begin clearing the intersection according to protocol for the incoming chopper.

“Then,” he paused, “because we need this to depict such a scene in Montgomery County,” he recruited several volunteers to act as the responders and he assumed the role of a bystander in his car on the scene. “EXCUSE ME!,” he shouted, “How long is this going to be?” He tapped his foot. “I am late for work and I am VERY important!” Everyone chuckled, and then, blushed: it is true, and it is pretty embarrassing if you live here. This is what first responders really think about us.

I learned the hard way that this is not hyperbole when I started running calls myself. One incident sticks out in my mind in particular — a night when it was pouring — the rain was coming down so hard you could barely see more than a few feet in front of you — we were called to the inevitable Beltway PIC. The engine blocked the scene properly to keep traffic away from where the involved vehicles were in the left lane, and the EMT who was our driver staged our ambulance properly. I looked out of the window of the cab for an opportunity to get out, and despite doing everything “right,” I was almost clipped by a driver who passed the engine and got into the third lane before passing the accident scene (this is a violation of traffic law, of course) and gunned it. I was passed whisper close by a vehicle doing about 45 mph in a torrential downpour, wearing a traffic vest and high visibility gear.

Who could suck all of the oxygen out of the air and engage in such ruthless preemption? I never saw that driver’s face, but I did see the face of a driver who cut off my husband and me while we were riding our bikes one day. We were taking the lane, riding abreast, and he passed too close and cut right in front of us. Neil decided to engage him, and he pulled up alongside him at the next traffic light. The driver rolled down his window and said, “There’s no bike lane here! Get off the road!” About 100 feet in front of us was one of the “share the road” signs that instructs drivers that cyclists are authorized, by law, to take the lane.

If you see people driving in an unsafe manner, whether around first responders, cyclists, pedestrians or other motorists, I encourage you to let them know – calmly. A few months ago a guy passed unsafely while I was riding my bike on Beach Drive. At first, I was enraged, and I chased him to the light. I made the “roll your window down” gesture, and he did. Fortunately, the rage left me and I said to him, quite calmly, “I see you have Virginia plates. In Maryland, the law is you are to pass cyclists at a distance of at least three feet. You passed me with two feet at most, and it was completely unsafe.” He blinked for a moment, and then apologized. “I had no idea I was that close to you. I’m really sorry.”

Maybe, just maybe, we can prevent someone else from engaging in ruthless preemption with deadly consequences.

She Became

“If you are loved by someone, you are never rejected, so decide what to be, and go be it.” – Avett Brothers

I belong to a support group for women coping with the loss of their mothers.  Although we meet in person, we occasionally email each other about interesting things we see.  One member circulated this bumper sticker she saw on a parked car, and it generated a lot of discussion among the group members:


For over a year, I have been trying to find meaning in a number of things that have happened. Sometimes I worry that I have tried too hard to find meaning in these things. Maybe there is no meaning – they were just a bunch of random things that made for a terrible eighteen months. Then I realize that there really is no way to overstate them: the events had real meaning to me and I ignore them at peril to my own growth as a person.

So, how can I properly grow from these things? How can “I become?”

I am not sure I know the answer to that question, but I do know that I am making changes in my life that I would have been afraid to make before. Taking risks has always been hard for me: I have always played it safe, and done what I think others expected me to do. I have noticed that a lot of people have started to steer away from me now, because I am not “who they thought I was.” The fact is, however, that I am really still the same person. My dreams and desires are now simply closer to the surface, and I may be less willing to mince words or waste time. It has truly been eye-opening to live this way. I could not imagine going back to the way things were before.

Did I become, then, or have I always been?

Normal for Him

Sometimes we run patients on a regular basis. Sometimes, those patients need regular transport to the hospital because they suffer from a chronic, life-threatening medical condition. In other words, not all “frequent flyers” are drunks who improperly replace an ambulance with a cab service.

One night, I ran one of our “frequent flyers” and had an experience that changed my life, in a small, but important, way. Our patient was quite young – just a few months old. He was born with a rare tumor that consumed the entire side of his head and neck. The tumor partially blocked his airway, so he had a tracheostomy in his neck to hold his airway open. As you might imagine, he received care from specialists at Children’s National Medical Center in DC, and his parents wanted us to transport him there, which we were more than happy to do. There is comfort and refuge in the world of experts of the rare.

The source of our young friend’s problem that evening was not entirely clear, but he was coughing, and having more trouble than usual breathing. So, we are standing in his nursery, and his parents, a lovely young couple who are very diligent and caring, are explaining the situation to us. I look around and survey the scene and I realize that the other EMTs, Paramedics and personnel look more frightened – I see the fear of the unknown in their eyes. But here, I am at home, so I step up and the paramedic lets me be in charge of talking to the family.

“What’s the name of that kind of tumor,” he asks me for the second time once we have our small friend in the ambulance. “How do you spell it?” I spell it for him again, and then I do an assessment on him, listening to his breathing through my stethoscope. And I am astonished at the symphony of sound that comes at me – stridor, rales, upper airway congestion sounds being transmitted, the tumor hitting the side of his tracheostomy tube with every little breath, sounding like a hand hitting a table. I smile at him, “hey there, cutie,” I say, “we are going to take you see your friends at Children’s.”

I look up at his mother – she is looking at me like I am an alien. She’s not used to people who are this nonplussed when they see a child like hers. Then I ask the question. I point at his heavy respiratory efforts and say, “so, is this normal for him?” Her face changes and she gives me an expression that I recognize – a little like a dear in headlights – but what does it mean? Wait, I have seen this expression before. No, better yet – I have MADE this expression before. And then the light goes on in my head.

And I am transported back almost thirteen years in time to when my son had a tracheostomy and my disbelief when medical professionals asked me that very same question. “Is this normal for him?” “What, don’t you know? You are the experts.” And so I learned how it felt to have the shoe on the other foot and I grew exponentially.

I put down my stethoscope and looked into the patient’s mother’s bewildered face and said, “we don’t see him every day. You do. He’s different than most people we encounter. We have no baseline to understand how he is now, versus how he is when he is feeling good. I need your help with that.”

She relaxed a bit and told me what was going on clinically that was atypical in her mind. When she finished, I said to her, “I’m sorry. I should have explained myself to you.” She looked at me and dismissed it, and I refused to let her do that.

“Oh no, I, of all people, should know better than that. My son had a tracheostomy when he was small and I also did not understand what people wanted or what they meant when they asked that question.”

At the hospital, we left him in the care of his nurse, who knew him on a first-name basis. As I went to say goodbye, I looked at the patient’s mother and her husband and said to them “remember, you are the experts on this child. Don’t let anyone ever tell you anything different.”

A wise man once said to me: “a wise person knows what he does not know.”

And I don’t know that.

Autism’s Secret Society

Four or five years ago, I was talking to the mother of one of my daughter’s classmates. We were talking about things to do with our children and she asked me, “are you on the list?” I had no idea what she was talking about. When I admitted my ignorance to her, she produced a poor-quality flier from her purse. It had a grainy black-and-white photograph of children playing in a gym. Attention All Families With Austim,” it read, “We will be having an event at [REDACTED]* this Sunday from 2-3 p.m. Please call [REDACTED] to RSVP and email Mother Jones** at [REDACTED] to have your name placed on the list for activities of The Group.”

I wondered what this was all about. When I asked her who Mother Jones was, the fellow mother shrugged and said, “I don’t know. She seems to have been around as long as I know. And she has an autistic kid herself, so she just started organizing things for the kids to do.” So, I got myself on the list, and I discovered that around here, the autism community has its own secret society.

Growing tired, as so many of us do, of going out in public and dealing with the general public and the annoying expectations of some people with “normal” children, Mother Jones began organizing huge play dates at various places in the community — sometimes the number of children that show up is in the hundreds. She rents movie theaters and shows sensory-friendly films, indoor and outdoor pools and water parks, playgrounds, dance halls, and just about any place you could think of for recreation and disseminates information to the people on her secret distribution list. It’s all in an environment where you are surrounded by people who “get it.” I’ve met a number of other families through the years at various events, and the parents (usually mothers) of young children tell me how isolated they felt until they found The Group.

Last year, Mother Jones finally organized a 501(c)(3) to cover any out-of-pocket expenses she incurs that she does not recoup through admission fees. She sent her distribution list telling us all about it. The next time I saw her, I asked her how much of her own money she’s laid out over the years, and she wouldn’t tell me. “Why the tremendous secrecy,” I asked? “Wouldn’t it be better if she could reach more people in the community by getting the word out?” “Not really,” she answered. “The events could actually become too large to manage. The word-of-mouth method has kept the numbers manageable over the years. It also allows me to vet each and every person who asks to be added to the listserv to prevent creepers from gaining access to our kids.”

She does vet everyone who is added to her listserv. How did I hear about her and where did my child go to school? How old was he or she and where did we live? Because both my children are on the spectrum, I was added to The Group’s activities for older and younger children. But we can go to whatever suits our family. I am very grateful that Mother Jones has taken this initiative and that she is so nice to our children each time she sees us. It’s a great relief to me to have somewhere to take my children to get out of the house on the weekends that gives us all something fun to do as a family. And I’ve met some really nice families through The Group. I’ve come to learn that not all secrets are bad. In addition to avoiding the “creepers,” as she puts it, the secretive nature of the group gives it a feeling of real security. You know the people you meet there are looking for the same things you are, and are in similar circumstances. And there’s real comfort in that.

As for Mother Jones, she continues to groom The Group and thinks up new and fun things to do. And she does seem to know the right way to get the word out. My children started seeing a local doctor about two years ago who has a practice exclusively devoted to children on the autism spectrum (after spending about six months on a waiting list). He was talking with me about the importance of getting out with the kids and doing fun things with them in a safe environment. After a moment, with a tiny bit of trepidation, he cleared his throat, paused and looked at me and with a sotto voce said, “have you heard about Mother Jones?” He has an autistic son and is a member of The Group himself. I laughed and told him that I had. Then I smiled and said, “I see she trained you well.”

*Any detail about this group has been omitted at the request of its founder. I told her about this post, and she begged me to try and conceal identities and information so that only those who already know about The Group (not its real name) would be able to ascertain about who and what I was speaking. I have honored that request.

**Obviously, a pseudonym. I named her after my favorite community organizer.


Note:  This post might be difficult for nervous flyers to read.  Trust me though, it is actually reassuring if you stick with it. And keep in mind that although I edited this post over many months, I finished it while in the air. On a United flight, no less.

I’m fascinated with those who keep their cool in extreme difficulty and manage to derive a good outcome in the face of major adversity. Hardly surprising, I guess, given that I am in EMS and as a friend said to me recently, “I have always thought of you as a grace under pressure.” I certainly aspire to that (although most don’t know how frequently I fall short of that). I like to admire those who have proven their mettle and think about ways that I can try to manage landmines in my own life.

There was a time in America, not too long, ago, when every aircraft had a single latch that would keep the cargo door on the underbelly of passenger aircraft shut.  In the rare instance that the crew failed to properly secure the door, or there was a mechanical or electrical problem, it could loosen in mid-flight. If it were to loosen enough, air would begin to leak around the seams of the door and if the airplane were at cruising altitude, the difference in pressure between the cabin and the thin air outside would cause what’s known as a “ring pull effect,” and cause the door to be sucked off the hinges. That’s exactly what happened on United Flight 811 in 1989. There was a warning light that came on in the cockpit, “DOOR FWD CGO,” that alerted the pilot of the problem. Unfortunately, in the case of Flight 811, it came on 1.5 seconds before the door blew off, taking a good chunk of the First Class cabin with it (killing 11 instantly), and almost sucking out a flight attendant, who was saved when a nearby passenger grabbed her ankle.

Once struck by the initial tragedy, the plane was in immediate jeopardy of losing control owing to the sudden depletion of oxygen in the air. And yes, the oxygen masks did deploy, but they did not work, because when the side of the fuselage was ripped off in mid-air, the lines carrying oxygen to the cabin were severed. The Captain and First Officer were able to remain conscious to get the plane safely landed in Honolulu by a stroke of luck. They made a rapid and controlled turn and descent back to the airport at Honolulu, landing without further injury or loss of life.

This incident created real change in the industry. First, airframe manufacturers began employing additional locks for the cargo door, so that if one failed, a pilot would at least have some time to try and make a controlled descent to equalize the pressure and prevent the door from being blown off the aircraft. Second, there is a a well-defined procedure in place now, through the use of a checklist, that specifies the precise steps the pilot and operating crew are to take in the event that the DOOR FWD CGO light comes on. There was one prior, but because there was no time to employ the measures it suggested before the door blew off, it was for all intents and purposes, a problem without a solution.

Atul Gawande extolls the virtue of checklists like these in just about every discipline in The Checklist Manifesto. His book is the result of a study on the efficacy of checklists in fields like aviation, with an argument that they would reduce mortality and complications in surgery (it was surprisingly rare to have checklists in surgery at the time he wrote the book in 2009). Gawande attributes the success of the landing with the remaining passengers and crew on board as the result of good hygiene by the pilot in employing emergency procedures. We use checklists (or “protocols,” as we like to call them) all the time in EMS. There’s a protocol for everything. Memorize the protocol, the theory goes, and you will be able to execute smoothly when you need it. Here’s an example for the protocol to follow when you have a pediatric patient with a heartbeat that is too slow: Ped Brad Algorhitim.

While protocols and checklists are, no doubt, helpful, there’s got to be more to it than that. Why is it people with the requisite knowledge and training can not execute even when they have the protocol at their fingertips? Why do they fail to follow it and make critical mistakes? Why can some people not even calm themselves enough to follow a protocol or checklist at all? I’ve spent some time trying to figure out what the formula for success in emergencies might look like. While I don’t think I could say I have identified and considered all the relevant factors, I think Gawande fails to account for the importance of two additional things other than good use of checklists: (1) the natural ability to focus; and (2) experience.

When asked how he made it through the event, and landed Flight 811 safely, the pilot, David Cronin, told a surviving passenger who was writing a book about the experience that, “I just prayed and got on with it.” Similarly, the “Miracle on the Hudson” pilot Sully Sullenberger said, “I had to focus on the task at hand, despite the stress,” he explained. “I only did the highest priority items and I had to do them well. This required the discipline to ignore everything else.”* What these two men have in common is that they were able to give a razor-sharp focus to the task at hand and to ignore everything else that was around them. Athletes often refer to this as “going into the zone.” There is little doubt that these two people were “in the zone” at the time they executed their respective emergency landings. I’ve wrestled with the question whether this is an innate attribute or whether it can be learned. There’s little literature on this topic, but I believe you have an inherent ability to do this or you do not. And the professions that value it (EMS, Airline Pilot, SWAT Team Member, Soldier, and many others) tend to be self-selecting. Someone who has anxiety every time the door closes is not likely to say “I think I will become an airline pilot.” If, by some aberration, you wind up in one of these fields despite lacking this attribute (which I will call “inherent focus”), you will likely be selected out in training.

What else must there be besides a coherent set of guidelines and inherent focus? The third attribute that seems to be important in clutch performance is experience. Sullenberger had thirty years experience and was less than a year from retirement when he landed on the Hudson. Cronin was on his second-to-last flight and was just weeks before retirement when he piloted Flight 811. This suggests to me that there is something beyond the checklist and inherent focus at work. In fact, Sullenberger did not have a checklist for a double engine geese strike — he had to devise a solution in under three minutes. The years of experience gave these individuals the ability to remain calm, focus, and to solve a novel problem. (This also makes me wonder whether we should be imposing mandatory retirement on pilots who are at the peak of their careers.)

As a society, we undervalue maturity and wisdom. Gawande’s theories certainly have merit and providing guidelines to follow reduces the risk of error when encountering common problems, but there is no substitute for the inherent focus and the experience that guides people toward better outcomes. This is our best hope to respond better to emergency situations.


Hidden Compartments

There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy. – Hamlet

Friday afternoon was the first true Spring day. It was sunny, with a warm breeze and I wished I could goof off and enjoy it when I got into my car around noon. But more serious business awaited – I had a meeting at my son’s school to talk about educational evaluations, so I tried to enjoy it by rolling down the windows and turning on the radio on the drive over.

The meeting was like many others. A lot of subtext and undercurrent, various agendas moving this way and that. One of the administrators present told us she was concerned that Ryan was falling behind his peers, specifically in Social Studies and Science. She wondered (aloud) if that was because of a “cognitive problem,” (read: incapable of being taught) and if, therefore, he belonged in a program with fewer demands (read: the most expensive baby-sitting the state can buy). Hence, the tests. I droned on about the lack of credence that can be placed in these things. At least one person on the team agreed with me. To be fair, I think there was some basis for the concerns, but our son is complex. Those who know him well know that he is secretive, with hidden currents that flow under the surface. There is much that he knows but ordinarily leaves unspoken.

When I was studying for my EMT license, one of the things the instructors drilled into us was the importance of evaluating whether trauma patients had palpable pulses, normal sensation and normal motor responses in their limbs (particularly in an injured limb). On every flow sheet there was a reminder: “Did you check pulse/motor/sensory?” I was terrible at finding one of the pulses in the feet – the posterior tibial pulse – I fretted and worried that I would fail my trauma exam, so I practiced on everyone in my family and in class, hunting around for that mysterious pulse that is nestled behind the ankle bone.

Our EMS textbook admonished us to heed the warning of a person with recent trauma and diminished pulses in the affected limbs. Such a disappearance, our textbook warned us, was a sign of Compartment Syndrome, “which is a medical emergency requiring an immediate upgrade to Priority 1 status for all patients.” What was this mysterious syndrome? Our instructor talked about it briefly, but did not dwell on it. There was a limited space between the muscle and the fascia layer, he told us, and if swelling or bleeding exceeded the capacity of that space, bad things started to happen. He also told us it was rare and we would probably never see it.

Until Saturday, that was the sum and substance of my knowledge of Compartment Syndrome. That is, of course, until an out of breath resident came running up the stairs from where my son was in the OR, having his broken tibia set, and informed us that there was a problem….pressure in the compartment…..fasciotomy…..incision….closing difficult with swelling….keep him in a medically-induced coma until we can achieve closure…..

Ryan’s compartments in his leg had swollen with blood from the fracture. Shards of bone had lodged into his muscle and tissue and he had slowly been bleeding into the space, so by the time they got him in the OR to reduce and set the fracture, his leg was pale and pulseless, just as my flow sheet warned. It is important to understand that this was an inevitable consequence of the fracture he sustained. What was not inevitable was how long it went undetected, which is, unfortunately, an indeterminate length of time. We need to wake Ryan up to know for sure what he feels and can do with this leg, and that might not be evident for some time. Before he went to the OR, our ordinarily secretive and uncommunicative boy was almost poetic in his expression.

“Mom, when the swing broke, I was flying through the air for a minute, like a pilot. But I was a pilot without an airplane, so I crashed.”

“That’s an interesting way to look at it, honey. Next time make sure you bring your plane with you, please.”

Our boy, who some believe has fallen far behind even his developmentally disabled peers, has some hidden compartments, and they are not in his leg.  In the ambulance, he asked me, “am I going to die?”

“Of course not honey,” I soothed, not realizing the events of the next 36 hours might bring us slightly closer to that prospect than I ever could have imagined. “Why would you think that?”

“Because I saw this man on the news, and he fell jumping into the pool. He hit the edge of the pool and he broke his backbone. He almost died. He’s in a wheelchair now.”

And I thought he watched the news every morning for the weather report. Of course, he hasn’t — he’s been absorbing it all, the stories he has seen, secreting it away inside. I wonder what the school administrator would think, if she could see him as he truly is, if she could see what I see.

I can’t wait to see him again.

The Grater Good

One of the quirky things about my daughter is that like many other autistic children, she has an affinity for unusual objects and forms attachments to them.[1]   There was a long period recently when her favorite toy was the cheese grater.  Yes, I am referring to the kitchen tool that you use to shred and grate cheese.  She just loved it – she would go to the kitchen drawer at her first opportunity, pull it out and run off with it somewhere.

I would often be making something in the kitchen, only to discover when I looked in the drawer that the cheese grater was missing, and I would have to set about the house in search of Allison and the cheese grater.

I will never know the reasons for her adoration of the cheese grater because she cannot tell us, but if I had to guess, I’d say she liked the uneven surface and the very tactile nature of the implement.  The same nature, of course, that makes it sharp enough to shred cheese and cut small fingers.  So, I sought to curb Allison’s interest in the grater, certain that it was inevitable that she would eventually cut her hand playing with it.

But she never did.  Eventually, her interest in the grater waned, and now when I go to shred cheese for an omelet or grate some hard cheese to sprinkle over pasta, it is safely nestled in the drawer where I expect to find it.  A friend, also a mother, came to visit earlier this summer and when I told her about this quirk of Allison’s, I laughed out loud, because I am so accustomed to her little quirks and I find (most) of them pretty endearing.  My friend, however, looked pensive and worried, both about my daughter’s safety and probably, about my fitness as a parent.   That’s how it is around here, though, and that’s as it must be.  Sometimes people shake their heads and say to my husband or to me “I don’t know how you do it.”  My most recent answer to that question, and it is a truthful one, is that a sense of humor and a load of patience goes a long way.

I am reminded about Allison’s summer love affair with the cheese grater because this morning, I read the blog post of a woman with an autistic son.  The current post discusses her feeling anger towards God because of her child’s autism.  As I read the post, I was forced to wonder why I was no longer angry as often anymore.  What made me stop focusing on “why me?” or more appropriately, “why my children?”

Blaming God for the fact that there are people among us who are sick, or dying, or dealing with disability is much like blaming Henry Ford for every car accident because he invented the automobile.  It is possible to create something without intending every consequence that flows from that act of creation.  Although that is somewhat at odds with the view of numerous religions that God is omnipotent and is in control of each and every event in the life of each individual, that seems to be an overly simplistic explanation of the nature of God.

There is risk in existence – risk that in being in existence, things will not always go smoothly or well.  There’s plenty of proof that is true in this world and I don’t think it is a failure of God’s intervention that makes the world an “imperfect” place. Or perhaps it is the desire to be “perfect” and free of sadness or suffering that is the problem.  Bishop Desmond Tutu said in his book, Made For Goodness:

“We get all worked up because we reckon that we must persuade God to love us.  But God already loves and accepts us.  God has loved us since the time before eternity.  That love is God’s gift to us.”

I think those familiar feelings of anger towards God are rooted in a belief that one must have done something to be unworthy of God’s benevolence or love.  But really, that desire or longing is just the same as a longing to be perfect (or for your child to be), and therefore, perfectly worthy of God’s love.  It’s just measured on a different scale for our children than most other people’s children. People could be angry at God that their child has flunked math again, or has blown his or her college scholarship, just as often as I could be angry that my daughter can’t speak to me.

Therein lies the fallacy that Bishop Tutu identified –

“Unfortunately, somewhere along the line we have been inveigled and misled by the culture of achievement.  We really can’t understand unconditional acceptance.  We think there must be a catch somewhere, so we tie ourselves in knots in the effort to impress God.  We strive and strain to earn what is already ours.”

God must love Allison, then, even with her cheese grater proclivities. And I do also.





Disabled at 35,000 Feet

Nothing strikes more fear into my heart than flying with my children.  The very thought of it is a disincentive to traveling by air.  At least it is a disincentive to taking vacations to places where we need to fly.  But in my better moments I realize that we can’t avoid it entirely, and our favorite place to travel is a long (multi-day) car ride away.  I rarely, if ever, have that kind of time.   There will always be weddings, funerals, family gatherings and other important things that our children and we cannot and should not miss.  So, we’ve take the approach of trying to just get our children accustomed to flying instead and doing the best we can.

Our son took this photograph during mid-flight


We haven’t given up our right, after all, to travel and be together as a family just because one of us can’t speak and is prone to random melt downs, sudden gleeful noises and hand clapping that could bring someone back from the dead and another one of us is an eccentric individual who has interesting social interactions just about everywhere he goes, have we?  And then there’s the kids, of course.  The freedom to travel is a constitutional right. The right of air travel is also specifically codified:  “A citizen of the United States has a public right of transit through the navigable airspace.” 49 U.S.C. § 40103.


Some would say even if we have a right, we should not exercise it, because it is just inconsiderate to others.  Out of an abundant sense of inferiority and guilt, we take extraordinary measures to minimize the disruption and inconvenience to our fellow travelers, by doing such things as:


  • Only traveling on flights that do not come to close to sleep times or medication administration times [where possible].
  • Paying extra money for seats that are in the bulkhead so our kids can’t kick people and rock in their chair and push back into others, or we sit behind each other to prevent that.
  • We throw ourselves on the mercy of the TSA and bring juice and other “favored” drinks, take them out of our bag and allow them to be X-rayed to avoid thirsty howls at the gate or on board.  Sometimes they get confiscated, sometimes we are subject to a lecture and shakedown, and sometimes we sail.
  • We take our daughter to the bathroom with increased frequency.  Not easily done on an airplane.
  • We pack enough luggage to occupy a team of Sherpas so that the kids have toys, snacks, extra clothes, more extra clothes and plenty of things to do in the air.
  • My husband (or I, but usually he) will carry our almost 65 pound daughter when she is having an airport meltdown to try and keep her calm and to get us to the gate on time.
  • We sit in the middle seat to “guard” our children against the window and prevent limbs from going into the aisle or into neighboring persons.


I’d posit that if you are flying on a commercial jet, you get what you get and it’s really not our problem if you can’t deal with it, particularly given everything we do above.  By the way, for those who are lucky enough to sit next to us, we routinely offer to buy people a drink (or two).  [The reaction of our neighbors to the offer of a drink shows us a lot about his or her character and gives us an idea of what our lives are going to be like for the next ___hours.]  Once, my husband tried to talk the pilot into letting our daughter sit in his lap for takeoff.  The pilot refused, telling us he “appreciated what we were dealing with and trying to do,” but he felt safety was more important.  I smiled and said, “I understand, we are just trying to prevent a lot of angry people on the plane.”  His response:  “That’s too bad for them if they don’t like it.  They are going to have just learn to cope and stick it out.”  I think that’s the right answer, and if nothing else, it bought insurance against some surly person yelling about the situation – we could just shrug and say “Sorry, the pilot said you have to sit down and cope.  Only autistic people can carry on aboard this aircraft.”


The real aspect of flying that is difficult for us – the one that makes life really hard – is that once the door closes, once we are up in the air at cruising altitude, sandwiched into that flying tin can of humanity, anything can happen, and often does.  We have had some pretty rough times in the airport as well.  Like the time our son refused to go home and went totally limp and fell on the floor of the terminal at Dulles or the time that some noise at BWI had our daughter screaming and holding her ears shut.  We’ve had good experiences and really bad experiences.  On most trips, it is some of both.  On a positive note, because I conceived of this blog post in the air, here’s a shout out to those who have been especially nice and kind:


  • The JetBlue flight attendant who gave us extra snacks and drinks and gave them to us early (before takeoff!) and was just all around nice to us.  We wrote a letter to her supervisor complementing her and I will always try and fly JetBlue wherever possible (nope, wasn’t paid to say that).
  • The flight attendant who winked and smiled at our son when he said “Why is this taking forever?” when we were delayed and talked to him about “all the safety features of this Boeing 747-500,” and actually kept him distracted for 20 minutes.
  • The random people who came up to us in the airport and told us that we were “really special people” and said “God bless you.”
  • The lady who sat next to me and my son for a four hour flight and when we touched down, turned to me and said “I’d like to say you prepared me well, but candidly, he was better behaved than most adults I have flown with.”
  • The man who laughed when we offered him a drink and who bought us one instead.
  • The lady who told a flight attendant about the passenger in front of us who turned around and called me a “moron” when our son kicked his chair twice.
  • All the people through the years who have offered our kids cookies or snacks on board and told us that we were a really nice family.


I have two ideas to make flying a little less stressful and better for families with disabilities or special needs. My family has told me both of these are losers in terms of profitability, so I guess they will never happen.  The first is a charter airline that only flies disabled passengers.  I could just imagine what “Autism Air” might be like.  As it turns out, there is a “light” version of this concept that offers charter flights for autistic children, but only for medical travel.

Autism Escapes.

Another idea is a lounge at every airport to which you could have access for a nominal fee that would allow you to have family rooms in which to relax before your flight that are sound-proofed and a “sensory” area and adaptive games that would be appealing to children with disabilities of different types.  Closed-captioned movies would be available on projection TV’s.


Maybe it would not be profitable, but given the number of autistic people in the world, it would be valuable.  I now have a “travel” tab on this Blog devoted to discussing your good and bad experiences with special needs travel (not just Autism) of all kinds.


Oh and by the way, next summer, we are taking an RV.