Happy Birthday, Andy!!!

To my little man, the best son and best brother on the planet. We love you.

For Mikaela, Owen, and their families... from ours.

We lost two beautiful lives this week. Mikaela was lost in California, Owen in Florida, and both to the nightmare we have discovered for our own family: eloping.

And to those families, who have been slammed with the judgment of the ignorant on top of the pain of losing their beloved children, I say this: You are not alone. We are praying hard for you, and know it could easily be us next.

There are several reasons kids with autism elope. There is the fright-flight response to stress and anxiety. There is the wandering behavior of their own curiosity and lack of impulse control (for those of you who think autistic people aren't curious, come stay with us for a few days. We can debunk that one for you super-quick.) There is the active attempt for escape and retreat, the need for freedom and control of a life that is often controlled by everyone else around them. All of these can be exacerbated by other skill delays- communication, social, sensory... the list goes on.

What we have learned as parents is that you can't have eyes everywhere. Safety issues can arise when you least expect them. Constant vigilance is absolutely essential- and not enough.

Joey can disappear in seconds. A blink of an eye. A minute of distraction. A moment of panic. Or those five minutes when you think, you are so sure, that everything is locked up and all is fine and you can get that sip of water or that moment to pee or that second to actually acknowledge your other child's existence, only to find he's discovered a way out. You didn't even know he was stressed enough to want out, and he's gone.

He's faster than you think, too. I made the mistake not long ago of assuming I could walk to the end of the street and would see him turning whichever corner he encountered next. He was already out of sight even of that corner. I think he may have even ducked between houses, but he could have simply begin to run the minute my eyes had been turned from him. By the time the immediate area was checked, he was long gone. We knew his paths and his favorite destinations, and we were incredibly lucky. We found him.

49% of families with autistic loved ones go through the panic, the terror, the pain of those minutes, those hours, when the person is gone. The rate is four times that of a non-autistic child.

We have been lucky, and we have always found Joey, safe and sound. From 2009-2011, 22 families in the USA were not so fortunate. 91% of those unfortunate families lost their autistic wanderer to drowning. The other two were stuck by a vehicle.

Both are outcomes that are awfully close to home. We live a few blocks from a large river, a smaller creek, and several pools. My mom's property is edged by a smaller river. When Joey escaped from us on the beach two years ago, we found him on the beach, in the breakers. He had gotten out because each adult thought another was watching him, while my husband and I went for a short walk along the boardwalk, a rare few minutes alone together. He was missed within about five minutes. The time of the search gave Joey plenty of time of cross the sand.

Those are the minutes people dismiss. Gone in a second, and then you begin the search. That search takes time. And each minute you haven't located them is another minute they are heading in an unknown direction, and into those dangers that can be fatal. A bolt into the street. A slip into the water.

Once you get through the ignorant people screaming that you should have had your doors locked (as if you didn't) and your eyes on them (as if you could stare at anything 24/7/365), you then have the helpful folks recommending preventatives, like Project Lifesaver.

This is a program where they fit your loved one with a GPS, and you call the police when the loved one elopes, and they can then find them quickly. Sound good? It is. Except that the program is completely volunteer, and there is not enough equipment to go around, and not always enough manpower at the local level to run it. The police officer who came to our house in August when Joey disappeared pressed us to get into the program, and friends had been praising it as saving their own wanderers for some time. We called. We were promised we'd have it within a week.

We're still waiting.

Families of Mikaela and Owen, and to those other 22 families, and the ones before and since, who have lost their children, we stand with you. We grieve for your loss and pain. We know it could so easily be us.

Having failed miserably

The meeting about Joey's suspension just didn't really go well. Our principal is very nice, and I think generally, he is a very good school principal. However, I don't think I got across what was needful. I get tired of trying to communicate in formal letters where every word is oh-so-carefully-vague and meetings where there i no time to process, no time to sift through and say what is needful, to bring in the references and ideas that I think would make things so much clearer. I get tired of having to think and communicate in words all the time. No wonder Joey gets exhausted.

So I started working out the kinds of things I wanted to say. And then I cleaned up the language, because I really do try to avoid cussing here. And the latest I came up with was this:


How do you make Joey feel when he is trying so hard to communicate, and interact, and control his anxiety, and you ignore him, or use too many words, or he finds himself out of control without the skills he needs to get back into control? Because you don’t know how to help him, your attempts at helping him become not only futile, but frustrating, aggravating, insulting, and even inflammatory.

To him, you appear to be mocking him.

It would be like having a bunch of dead fish, but no one around you will acknowledge that the fish are dead. Instead, they offer to help you look for the fish or try to help you figure out why they disappeared.





The problem might not even have a solution. But you aren't necessarily looking for solutions. You're maybe just looking for someone to say "sorry about how dead your fish are" or "wow, those are super dead. I still like you, though."



-Hyperbole and a Half

Allie was describing depression. I don’t think that is a coincidence. Being treated this way for so long, by so many people, has resulted in severe depression.

We need to start with acceptance, and that is not something that was demonstrated here. Tolerance, yes. Acceptance, no. We have to first meet Joey where he is, instead of expecting him to meet us halfway. Or in this case, the whole way. You are the adult. He is a child.

Joey is eleven years old. However, he has a developmental disorder, and that disorder is pervasive. That means there is nothing about him that is not part and parcel with his autism. There is no Joey-without-autism. There is no behavior-that-is-not-autistic that Joey does. There are no non-autistic motives. There is no separating threads out, this one autistic, this one not. Trying to treat him in that way is not only ineffective, it is ignorant, and even abusive. It will make the problems we are facing worse, not better. Reinforcing those problems isn’t helping, either.

One facet of autism is an inability to control emotions. And like many children, Joey can feel, but he can’t always express his feelings in a way that is clear or correct. He can’t translate feelings into words the way an adult without autism can. He can’t just walk up to you and say, “I need help.” He can’t just go to someone and say, “I’m in the red zone.” Expecting him to do this is inappropriate. He is being trained to do this, but it still involves a level of control of emotion and language that is out of Joey’s reach.

It would be like standing in front of a kindergartener and saying “One apple plus one apple makes two apples. Got it? Good. Now you can run this cash register, and you’d better not be off at the end of the day.” Then, when we come to the end of the day, punishing them with progressive severity depending on how many days we have done this to them, and how off the cash register drawer is, and how much stock is missing.



I feel like we got a lot of this from you. Instead of understanding what I was trying to tell you, you were busy trying to defend punishing my child for being autistic- and punishing him in a way that was not even helpful in changing the behavior you found offensive and unacceptable. You insisted on labeling him as a discipline case, instead of trying to understand his needs and what really happened from a constructive and accurate point of view. Now he is branded, he is likely to act this way again because it was successful in getting his goal of going home, and you still don’t know enough about autism or my son to intervene appropriately should more problems arise. I would call that a lose-lose situation.

729 students, and you are the crisis manager. You said you can’t possibly know all 729 students. That keeps bouncing about my head. I was told a very similar thing some years ago, when we were having trouble before, and trying to get Joey some proper and appropriate occupational therapy. If you are the crisis manager, and you do not have someone specialized in the needs of each and every one of those 729 students, then it is your job to know each and every one of those 729 students, and what they need. It is your job. You are supposed to be the professional at this. If you don’t, then you need to either get trained, or have someone there who is. That is simple, straightforward logic- especially when we are talking about crises- moments that are potentially dangerous.

I’m an art historian. Every semester, I have 170 students. I am expected to be able to respond to the learning styles of those 170 students. My students change every 3-5 months, for a nice total of about 400-500 students a year, all new (you have some new, some you’ve had a year, some you’ve had 2 years). Additionally, I have to know thousands of works of art from all over the world and their cultural context, and be able to recall that knowledge at a moment’s notice. That’s my job. I have never told anyone that this was impossible, especially my students and colleagues- because it’s my job. I get very tired of people telling me they can’t keep up with all the knowledge they need to do their job. I don’t expect you to start giving spontaneous lectures on the role of ashlar masonry in medieval vaulting and clerestory construction on a moment’s notice to answer a question. I would, however, consider it reasonable for you to expect me to do this. You can then go ahead and give me the third degree on Picasso, and I should be able to at least handle the concepts involved in Cubist and post-Cubist art. You should also be able to pull up a current student and be able to discuss their work and learning style, and I should be able to give you a sense of their skills and successful ways to support their learning in the classroom environment- and to make clerestories and Modernism relevant to them. It’s my job.

Since you know, and knew beforehand, that suspending my child was not in his best interests- your words- you should have, long before this crisis, determined what intervention and consequences would have been in my child’s best interests. You should have consulted your resources, and come up with an appropriate answer to the question, “what should we do to prevent this?” Unless your goal was to brand my child a discipline problem, preventing a repeat of potentially unsafe behavior would, I should think, be our immediate goal. AS the crisis intervention person, that is your job. Asking me to come up with such a solution, on the spot in your office, and then insisting that this discipline write-up and suspension will stand since I could not come up with an immediate answer and solution is not only unfair, it is counter-productive, and shirking your responsibilities. Tossing your job on my shoulders? Totally uncalled-for.



I realized that you know my son’s name, you know his face, but you haven’t bothered to know him at all. Trying to intervene when he is in crisis without knowing him is a huge mistake, because he is not like most of the kids in your school. You have 729 kids in your school, but only a handful of them are autistic. Trying to intervene as if they are not autistic will always result in disaster. You come up with the solutions to the wrong problems. The concepts you are using do not match up to the situation at hand. The result is a swift spiral into the chaos of frustration, anger, confusion, and depression… for Joey. He does not have the tools to deal with those emotions in ways you expect, ways you find acceptable and appropriate, ways you want to reinforce and promote. Instead of dismissing him as a discipline problem, trying actual discipline, not just punishment. Don’t break him. Teach him.



When I posted this online, I think most people assumed I meant me. I meant Joey.

Children with autism often have a very uneven profile of skills – e.g. they may be relatively able with numbers, or art, or using the computer, but may find relating to others difficult. Even if your child has lots of other skills, if they do not have those early interaction skills, you may need to teach those skills through engaging in the type of play you would use with younger children. Start where they are.
–Autism Sparks

I am tired of people who are supposed to be professionals not being able to handle Joey. He’s really not that difficult. His skills are uneven. We are perfectly glad to "accept" and acknowledge his emotional disabilities when it means that big smile on his face, his willingness to accept others, his need to please, his desire to be hugged. It’s all good when we get the giggles and the silliness. But when that lack of control goes sour, instead of meeting it with the same acceptance, the same understanding, we freak out. Instead of containing him and helping him through, we forget everything we learned about how to deal with an overwhelmed 5-year-old, simply because he is in an 11-year-old body, and we know he can do a lot of 11-year-old things. The uneven skills, the splinter skills, the gaps we see in academics are ignored and forgotten, and we place expectations on him as if he were in the same place as his age-peers in development. We try to compartmentalize his autism, and address what we see as if it were a mixture, not a solution. But once you mix the egg into the cake mix to make batter, you cannot extract the flour back out and put it aside. I’m not even sure why you want to.



I don’t think you learned anything from this situation. If you had, you would have understood how the whole situation was an act of discrimination against Joey. You would be working to break those old habits of thinking, look closer at my child and see that this whole situation was completely preventable, had there been appropriate supports and resources in place- the supports and resources we have been begging to have in place since out first IEP meeting with your school.

Joey, however, learned a good deal. He is echolalic and echopraxic, but has learned to use these as tools- cataloguing each and every word and action, noting its use as a tool for his own agenda and needs. He learned that these actions and words do indeed give him a vacation from the stressful, high-anxiety environment of school. He learned that the people around him are not to be trusted, as they are not able to help him when he is feeling panicked and is out of control. He learned he has nowhere to turn, no safe space- either physically or emotionally- in that building, and that if he acts out in ways he has seen others act out and get to go home, you will send him home. Where it is safe.

The consequences of this lesson will continue to reverberate. Just as we never recovered from similar trauma in his third grade year, it is likely we will never recover from this.

When I was about Joey’s age, I had a meltdown, not quite the intensity I see in Joey. It had been a bad day at school- a myriad of small things that felt like being pecked to death by a duck. The day was warm, and I had a mile walk home from the bus stop. My body ached, I was exhausted, and I went into fight-flight- for me, that involved a sort of swirling, moving forward, and crying. I realized I needed help, and turned up the driveway of one my well-known neighbors, with the goal of asking them to call my mom, or at least sit down in a cool room for a moment. My neighbor had a dog- not a big one, and fairly old, I had played with it a hundred times before. As I turned up the driveway, the dog ran towards me, barking. There was no threat. The dog was likely barking because it was happy to see me. However, in my exhausted frame, it was terrifying. At first I stopped, panicked; and then I ran, crying harder. I made it home. The neighbor had seen me, and called my mom, who just couldn’t understand why I would be suddenly terrified of this gentle, well-known animal. Nor could I explain it- I had no words for that experience, and no way to explain to my mom that it wasn’t about the dog. **


But to this day, I remember it. And it still makes my stomach knot up, and I can remember the blind terror of that walk home. To this day, I do not like dogs. I tolerate them, but I do not like them. That moment was thirty years ago. Imagine having that kind of trauma every day, or even just once or twice a week. My child goes through his whole life on the brink of it. Every step. Every breath. Every moment.

For emotional development and skills, your school has not only been a total loss for Joey, but marks a severe regression in skills and ability to cope, reinforced by lack of support, inappropriate response by “professional” adults, and reinforcement of undesirable behavior and strategy. Joey arrived at your school able to be with his nondisabled peers for the majority of his day; now he cannot even consistently handle the few minutes before school begins. We have experienced repeated and complete emotional breakdown.

And for that, you decided to “punish” him, and place in his record a brand of being violent.

If you had been through what Joey has been through, and trying to deal with the anxiety and frustration he deals with every minute without a break for three years, and have every “appropriate” strategy you had been taught turn out to be unsuccessful, you might get violent, too.

If that is the only way you can be heard, you likely would reach a breakpoint to go for it. Joey reached his.




**(I was fortunate- my mom understood me. Although I don’t think she had any clear way to explain it to me at the time, I think she understood pretty quickly that it wasn’t about the dog).

On The Run

There are many challenging behaviors that can present in any person, but this week we have been keenly aware of one that Joey has been displaying for three years now: "eloping." This is in the original sense of the term, "to slip away" or "escape." With Joey, we have noticed variations in the behavior, and it can be important to note the difference in them when trying to help Joey. I call them bolting, escaping, and running. All three are stress responses. There is also wandering, which we don't see very often, and is more of an impulsive behavior than a stress response.

Bolting is actually the most dangerous, a severe impulsive fight-flight response to stress. In bolting, Joey is in blind panic. He doesn't know where he is, where he is going, he is just gone. When we first had trouble with eloping, this is what we had- a child so in the red zone and out of control, he just ran for it. Probably the most dramatic incident we had of this kind was at the Renaissance Faire, when he became overwhelmed, and then has a horde of people in costume chasing him through the woods. It wasn't pretty. We have recently been seeing more of the flip side to this coin, the fight mode. Joey was suspended this week for choosing fight instead of flight.

Bolting is dangerous because Joey has no sense of place or space, he's just barreling ahead. He could run into a street or become lost. Also, it is very scary for him, creating a dangerous spiral. As he begins to realize what is happening, he becomes even more upset, starting the spiral again.

Escaping is a more cognizant response to a specific moment of stress, or a moment when the stress becomes overwhelming. Usually, Joey know where he is going, either vaguely (I want to go home!) or specifically (going to hide in the car). He is usually displaying anger, and recently, aggression. Escaping occurs when he feels scared, unsafe, and overwhelmed. It is often unexpected, unless you are in the middle of a direct confrontation with him. An escape can escalate into a bolt if he is not contained quickly and supported effectively. He can also be very sneaky about it- edging towards the door, finding a key to a lock, or climbing over a fence.

Escaping can be dangerous because he can be gone before you know it. You think he is in his room, and he is down the street. It can also accompany a major meltdown, and if stopped inappropriately, can also regress into a fight response.

Running is a more deliberate attempt by Joey at a calming technique. Going for a walk tends to help his head clear, and sometimes he will attempt to do this if he is feeling stressed and just wants to get away from a specific person or place. This one is dangerous because it takes you by surprise- you don't realize how stressed and anxious he is. He usually knows where he is going, and often is ready to respond by teh time you find him.

We don't get wandering very often- an impulsive movement towards something of interest, or away from something not of interest. It can be a little nerve-wracking to have that sudden "where's Joey?" moment, because often you are someplace new or in public, and thought you had eyes on him.

What is terribly important is that all of these manifestations of eloping can be dangerous, even deadly. Joey can talk, but his unique and non-typical use of language places him at risk. Not only could he get lost, but if he is bolting or escaping, he might use threatening language that would be (understandably) misinterpreted by a stranger as a serious and immanent threat. Joey is big. If he barreled at a stranger, that could also be misinterpreted. In Virginia, where people can carry firearms in public, the threat of being a deadly behavior increases to horribly deadly probabilities.

We have been waiting for Project Lifesaver to help us since August. We've looked into other options, including purchasing a GPS, but none of the devices available to the general public are reliable, and there is no way to keep them on him. As Joey's challenges at controlling emotion and response become increasingly apparent, and incidents such as the one at school this week- ending in a suspension- become more frequent, our fear is also on the rise. There are just so many ways this could end up wrong.

Dead wrong.

Seven Years

Yesterday was my Blogiversary. I've been blogging for seven years.

I've seen a lot of excellent blogs come and go. I've tried some branching out, wishing for time I don't have to tell about things that may or may not interest you. I've tried strategies that didn't work, changed my ideas about a lot of things, and managing to not blog about a lot of important stuff.

I've watched a number of bloggers, many who have come in after me, grow into huge, popular blogs, while I remain here in the quiet backwater. To be honest, that's kind of the story of my life.

Joey was basically nonverbal when I began writing online here at Life With Joey. He was four years old, watching Pinky Dinky Doo and clutching his Bus. We were just entering the world of echolalia. I got to blog about Joey's first conversation. I shared a newbie special needs parent's view of time. I've written about potty training at 5, the therapy circuit, the never-ending evals, the meltdowns and the good days- and things that make life good (and more things that make life good).

I hope I've done some good sharing these things for all and sundry to see. I hope posts like Powerpoint Thinking and Quick Guide To the Day After Diagnosis have helped do what I wanted to blog for: help people move away from fear and into acceptance, understanding, and advocacy for their loved ones. I hope you all know You're Not Alone. Parenting any child has ups and downs, so I hope sharing ours has helped, even with my small readership.

Thank you for sharing the comfy couch corner of the internet with me and with my family. I hope you still know there's cocoa and coffee and ice cream in my virtual kitchen, and squishy pillows, and plenty of hugs for you. Make yourself at home.

Surfer's Healing

These folks need our help.

These camps fill up so fast, you have to plan your day around the registration opening- and hope they open not one minute early, or you're wait listed. Like us.

Why are they so popular? Because they make a difference. A huge difference. An oh-my-God-my-kid-has-to-have-this difference. For us, it was a breath my Joey desperately needs from his anxiety and depression, from the frustrations of just trying to be himself in a world that, despite our best efforts, simply does not accept him for who he is. A world that seems deliberately designed to thwart and frustrate him.

Why are they so important? Because they do this:



See that relaxed, smiling boy? We hadn't seen him in a while.

The program is entirely volunteer, and entirely free. That's right- free. They are serving families already overwhelmed with costs of therapy and care, therapies and interventions that medical insurance often sees as "not medically necessary" (because apparently being able to do things like speak, move, and interact are not medically necessary- what?) or "experimental" (translate= the insurance company hasn't updated their library of studies done in years, and are perfectly willing to completely ignore the progress and improvements your kid has made with an intervention) and the schools are too overwhelmed to offer. Even small accommodations can cost money. We've just had to put up a new gate to our yard because Joey figured out how to climb over the old one- that's $700 just so we can let him play in the back yard. Our house has double-key locks, we had to install them. We may have to install a security system just to keep Joey safe. We've been waitlisted for Project Lifesaver since August; we've had two major bolts since then (when he was gone for more than 20 minutes and we had to bring in others to help search for him, and he was found more than a quarter mile away) and several smaller escapes since that August incident. To get one ourselves? About $150 for a device, plus a monthly service fee. And even the best of these devices - downright cheap compared to the ones used by the police and Project Lifesaver- is a gamble for whether or not it will work properly. Compared to other families we see, we get off fairly inexpensively, too. We just do OT/social skills group and speech/language, plus these smaller interventions. We had to pay out-of-pocket for a round of vision therapy (that was AWESOME). But we're not on special diets or doing horse therapy or art therapy or music therapy or having to get a service dog. Joey doesn't have any attendants at home (except me and JoeyAndyDad and Grandma). We don't get respite care. All of those things cost money- a lot of money.

And no, there aren't huge studies to say this program makes everything all better, or any long-term improvements. But I can tell you, it makes the world a better place- even if it is just for half an hour, for one boy. A Joey-Boy.

Please help.

Where The Air Is Filled With Sandalwood

I just finished filling out a pile of questionnaires, screening tools, and parent evals for Andy, I still find it difficult to grapple with ADHD and how it affects Andy. I think because in so many ways, our life is "normal" for us, I still have trouble understanding that my experience of parenting is so far off the beaten track. I am in India, not Italy.

We are in an odd place for out family right now. One of my jobs has taken a severe hit, and I in definite danger of losing another. On top of that, the job that has been the stopgap for some of this is ending... today. Jus gave the final exam this morning. Eep. This puts a serious damper on planning for summer and therapy schedules. My current plan is for me to eat less and cook more as a money-saving strategy (and a health strategy- I really do not need a bedtime snack. Seriously.)

At the same time, my boys keep growing, and it is time to plan for new experiences and getting them re-familiar with old favorites. We need to start thinking about colonial history when we go to Wakefield and Williamsburg. We need to explore more science a Skyline Drive and the Smithsonian. WE need to start appreciating and understanding the world around us at the next level, beyond that early recognition of novelty.

That is more difficult for my kids than for most. It takes more planning, more preparation, and more readiness.

Andy has a field trip to the zoo coming up. Hes asked me to go. If I don't get picked as a formal chaperone, I will likely drive up on my own. I will have my Zoo Bag ready and with me: extra water, fruit snacks, crackers, cheese sticks, a noisemaker, a squishy ball, paper and markers, a damp cloth, wipes, and a spare set of clothes and sunglasses. Most of my friends haven't carried a Zoo Bag with them to the zoo since their kids were infants. They often toss some wipes and a camera into their purse or pack and off they go with their nine-year-olds. THey aren't fighting a constant battle against Glassman, RockBrain, and HyperBunny. Their kids remember their underwear.

All too often, they don't understand the difference between a high-energy kid and a hyperactive one. They don't get that there is more to ADHD than just bouncing off the walls. And they aren't afraid to say it. Society gives them license to say it. Not only is my kid's special need invisible, it is openly denied to exist at all. Yay, me.

Looking down those questionnaires, the vague "often/sometimes/never" of screens and evals, knwing that each and every answer needs qualification and context, more specific information to really understand, you want to think the folks who score them will understand. I have learned otherwise- the hard way. Hard for my boys.

The good thing is it also gives me a better idea of how to help. Thee evals are reminders of skills and challenges, things that may need to be addressed and supported that we might forget are challenges for my guys. They serve as a reminder that expectations should be high, but you need to plan for success- it doesn't always come intuitively. That more often than not, we are still packing our Zoo Bag for situations other families have long taken for granted and easy. We need to be prepared to succeed. After all, India is wonderful, and beautiful, and full of life, color, and the scents of ginger and cardamom. We enjoy it as it is, as long as we don't expect it to be the Mediterranean.