Bad blogger. No doughnut.

I know, i have been totally remiss in blogging. We've been a little busy here, doing this:

And this:

And this:

And this:

And, well, this:

And then today, we started this:

I might have some time tomorrow. Or the next day. No, really...

Hark, To the Store!

Joey was up and ready, JoeyAndyDad and Andy were not, so I decided to take Joey with me to the grocery store this morning. Impromptu adventure awaited! Working on life skills 1:1, while get the grocery shopping done! It's a win-win!

He insisted on taking his shovel with him (by the way- anybody need sand pails? We just need the shovels. I've quite a collection now). We made our list of needfuls, got ourselves to the store, and proceeded to the adventuring. Joey was happy to pick out his own grapes, bananas, and apples for the week. He was excited to discover we were also shopping for Grandma, and he got to pick out her weekly treat (coconut danishes!) There was a train to watch for a while, and people to talk to, and the cart to push.

Happy boy.

But also anxious boy. People to talk to means people everywhere, and not all of them are happy to talk. Some might bump into you. You might bump into them. The store has high ceilings and wide spaces. The lighting is odd, high and flickering, dimmer some places, brighter in others. The din of the people and carts and music is constant. You are surrounded by a new place, full of unexpected surprises.

What better way to get through this than by singing and dancing, right?

So my boy and I sang "Bare Necessities" through the store, together. And sometimes, Joey did his Baloo dance. And when he started getting tired, he started making up sillier lyrics for the tune. I took the cue, got in line, and got us out of there, even though there were a few more things I wanted. Success for Joey- a pleasant trip to the grocery store- was far more important.

So I leave you with a new image- my boy and me, singing away as we thread through the supermarket aisles. We make a great team.

All To Himself

Andy spent the night at Grandma's. Mostly because he loves being at Grandma's/ Partly so he could avoid cleaning his room. But you know how that goes. No, I didn't touch it.

Joey came home to find no Andy.

"Where's Andy?" he demanded.
"He's at Grandma's," I told him with a smile. Joey hasn't been able to stay at Grandma's since he started bolting, because Grandma can't chase him down, so he's been getting a bit grumpy about it. Therefore, I added, "Since its just us, we can do anything we want! What would you like to do?"

"Go pick up Andy."

****

Artiste at work

But what this meant was Joey had me all to himself all afternoon. So we went to lunch at his favorite spot, and picked up some more paints and some tiny canvasses he saw at the craft store, and spent a good amount of time painting and mixing colors. All this time, we mostly scripted Blues Clues episodes, to his great delight.

Then he looked at me and said, "Let's go to D's". I called up D's mom, and they were delighted, so off we went. He got to spend a few hours with his buddy down the street, who isn't in ESY this year for reasons unknown.

To end this perfect Boy Afternoon, we played some Joey's Clues to find out what Joey wanted after playing at his friend's house, and it was Take A Nap. So I tucked him into bed. He asked me to read him two books- one was Goodnight Moon- and sing. I haven't been asked to sing in ages. He wanted the ones he liked best when he was small: Michael Row Your Boat Ashore, and The Fox, and Shoo Fly, and Wheels on the Bus, complete with our own special silly verses. If he didn't take up the whole bed, I would swear he was 5 again.

Summers are hard. The schedule is up in the air, even if you are actually liking school for the first time in a long time and getting to indulge in your new art interest. Now having your constant playmate at home is hard. Having long afternoons to fill is hard.

Sometimes, its nice to have a Mommy break, and be little again-- when things weren't so hard, and they were familiar and happy and simple to process (at least it seems so now, when you have already processed them). So we spent the afternoon having a break, with plenty of hugs and kisses and Mommy all to ourselves.

Now, its time for me to go get Andy, and see if I can get him to pick up the trash in his room.

The Spirit of Adventure

A very dear and respected friend wrote to me this week, and ended his letter with an invitation to join him in India. He is getting older, and I worry that each visit he makes to India- and each letter I get from him- may be his last. You know I would totally get a ticket and go, if I had the money.

The invitation included the boys.

I read it, and re-read it, and turned it over. How much I wanted to be taking the boys to India now! The boys are old enough for the trip to really mean something to them, to be a watershed moment of their lives, for good or ill. But life has intervened on my plans. I am just now getting a full-time gig, and it isn't a permanent one (its a year-to-year contract- the new "trend" in academia). And then there are the boys' needs- Joey and heat don't mix well, and there is one thing India is- hot. Even in the coolest part of the year- which would them bring in the problem of crowds- it would be, for Joey, hot. Not to mention the new, the unexpecteed the unpredictability, and the shear overwhelming different-ness of India...

But I also know my friend has a child of his own, now grown, with special needs every bit as great as Joey's. I don't know if he has ever taken his child to India, but somehow, I suspect he has.

And he invited my boys to go to India. What an opportunity, to have my boys be in India with my friend and I, and exploring India...

So I put it to them: would you like to go to India some day? Not today. Not this summer. But someday. And Joey came back without skipping a beat, " Yes!"

Andy put in some rambling no-ness, which was distracting. Had I really heard Joey say he wanted to go to India? Did he understand what it meant? We talked about India being a different part of the world, a different country, and what travel might mean- a long airplane ride (my kids have never been on an airplane), a stop in London (they love their London Olympics video game, so I thought this might perk interest from Andy), and... the heat.

"Yes," Joey chimed in cheerily. "I would like to go to India!"

That's my boy. I know what I'm saving up for this year. And we may not go this year, or next. There are a lot of challenges to be met and considered. I know there will be challenges we won't think about until they appear before us. But Joey wants to go to India. You know I need to make that happen.

***HAPPY DANCE***

I just got a full-time job teaching at our local community college! SO HAPPY!!!!

So looking forward to getting caught up in therapy payments... I mean, teaching lots of students!!! ;)

Just wanted to spread the joy. Sending all my readers happy hugs!

Assumptions and the Point of View

I live in a world where we question and challenge basic assumptions all around us, every day, simply by existing. We challenge what people think it means to be human, to be intelligent, to be functional, to be autistic, to be "normal", to be happy. We make these challenges because it becomes quickly obvious that our lives and experiences are different from what appears to be a vast majority of how those around us think, feel, and experience the world around them.

I have lived my life this way.

When I was very young, I figured out very quickly that I understood the world, other people, and even space differently than other people around me. It has been a constant struggle to relate and connect, because I relate differently, I make connections others don't make, I live is a network of connections and assumptions others don't have. As I grew, I found it wonderful to discover other people who, though they didn't see the world like me, still saw it in ways that were unique, interesting, and diverse. This may make for a lot of difficulty trying to connect with other mommies at the park (I'm not fond of Titanic and have no interest in reading Shades of Gray), but it makes for a wonderful world of friends and experiences- never a dull moment, always something new to think about, even as they fade in and out, coming into focus and out again, spinning like stars in the void, little nestlings, oases if you will, in a vast press of banality.

I may not have many friends, but each of them, I assure you, is a jewel, in their own fascinating facets and flaws. We hang together like Indra's Net, a constant glint and dazzle of cosmic gems. Meeting a new friend is always a wonder for me, an earthshaking event to be marveled at, wondered about, explored, and relished.

Some years ago, I stopped by a friend's house; I was bringing her something, and just stopped for delivery. She was having a little book club in her house. They were discussing a book I had never heard of, but I was invited to stay because it had some connections to South Asia and my friend knew I am a South Asianist. I would say I was one of the few neighborhood women who hadn't been included in the club invitation- which for me is par for the course, really.

The scene they were describing was, to me, almost surreal. A man had kidnapped a kid and apparently forced the child to be some kind of sex slave (no, really) and had somehow managed to injure the child and thus put in the hospital (people read these books?), where he was now lamenting that bad things always happened to him (not the kid, to himself), and how terrible and miserable it was that the kid was injured, because now he might have to go without his little sex buddy for a while.

They got about halfway through this description, and had started on how was feeling badly, and I thought sure this was going to be a moment when he realized what a misery he was making this kid's life and then do something right for a change- but no, the character was a complete and utter selfish jerk who could only think about himself, crying over how he was being inconvenienced.

Then came the part I found really surreal. All of these women started chiming in about how they related to this character, and didn't we all feel this way when things happened? Everybody thinks of their own inconvenience first, their own self first, after all...

And I knew, instantly, that I had nothing in common with these women.

The flippant attitude, the idea that all people are, by nature, selfish and mean, and that everybody feels... well, the way they do- there is something inherently arrogant in that. I won't judge them based on a single conversation about a single character in a single book, either- the scene I describe is not absolute in who in that room I ultimately liked or disliked or whatever. It was just a keen, and somewhat embarrassing, reminder of differences, and the fact that other assume everyone else is like themselves.

Which brings us to this week.

There have been a lot of broad brushing, painful, ugly generalizations running rampant over the internet, as buttons have been pushed and surprises popped upon us. I get tired of reading them. Whenever I see those catch phrases, they make me cringe, make me somehow angry that everyone assumes all people see things the same way: "Just admit it..." "You know you do..." "We all do/feel/know it..." The article that assumes all white people get defensive when they see a black kid in a hoodie at night. The article that assumes at all autistic people want to be "cured." The article that assumes all men want to have a affair. The article that assumes everybody thinks of themselves first.

I now put out my own broad-brushing, painful, ugly assumption: people who assume everyone is a selfish, selfist jackass tend to be selfish, selfist jackasses.

And I don't like being told I am a selfish, selfist jackass by people who are selfish, selfist jackasses, and know nothing about me, or how I see the world, or what I experience through my own senses and thoughts and emotions. Studying culture and society and how they color and influence experience and understanding is interesting and fascinating- but even more so are those who stand out, who help us question what is cultural and what is not, and what it really means to live and to be.

Which brings me back to my friends, my family, and my sons, and why I find them fascinating and wonderful. Keep thinking, folks. Keep questioning. Keep wondering.

Challenge those assumptions.

Good Signs

We returned to speech therapy today after a three-week hiatus. Last day of school was a half day, then Joey had two weeks of camp that interfered, and there was no day to do a make-up. The appointments went OK. Joey had a few minutes of not so good, but they both got done what they needed to get done, so we'll call it a win and see them next week.

As I was waiting for them, a gentleman came in to make an inquiry about his own appointments. As I have a hard time blocking out voices, I soon learned that he was deaf, and was there to help with his speech so he could better communicate with hearing people. I smiled politely as he turned from the window and sat down to await resolution of an issue, and he smiled back, and we returned to ourown activities.

Then Andy came out, and his therapist told me he had done a great job. Out of habit, and as part of his praise, I signed to him, "good job." The gentleman perked right up, and caught my eye; he asked if Andy was deaf. I felt a bit awkward, as I suddenly could not put together the signs to tell him that we use signs to support speech, but I did manage something (and fortunately, the gentleman was very good at reading lips, and could fill in for my not-so-great signing). I think I signed something to the effect of not-deaf-signs-learn-talk. Yeah, not a great performance, but I find it really hard to sign and speak at the same time- and the gentleman figured it out.

Then Joey bobbed out. He realized I was signing, and the man was signing, and I said something like, "Joey, this gentleman signs!" and Joey was so excited! He turned and started a little conversation while his therapist tried to tell me what he worked on today. I know the gentleman asked Joey's name, and Joey asked his, and then there was something about orange- not sure if it was the fruit or the color. About halfway through, Joey turned and sang with great enthusiasm, "he really can't hear me!" and I managed to sign (and I am a terribly slow fingerspeller) that Joey is autistic, but I was pretty sure whatever Joey was signing to him probably seemed as random as Joey's conversation openers are to most everyone.

I will never be able to thank that gentleman enough for his patience with us. He was totally awesome. I am totally writing a note to take with us the next time we are up by the speech office to thank him, and let him know how happy he made Joey.

Joey was so excited that he actually could talk with the man, even though the gentleman could not hear him. In fact, he was so excited, he talked about it all the way home. I might even take him over to the local Deaf club, which meets once a week (they welcome hearing people who are learning to sign to join them). If Joey can handle the social part, I think he would really like it now.

Even Andy, who has been a bit put off by the signing lately, went over and seemed interested.

I want that gentleman to know what he did for us, because we certainly know what it is like to be a "teaching moment" for others, and know it can be uncomfortable. And whether he was comfortable or not, I just think he ought to know he gave somebody some joy just by being himself, and being there. People need to know those things. And maybe the next time we see him, we'll have some more conversation. After all, that's how friendships start.

Overrun

I have some new lilies for my garden. My awesome mom bought them for me- an array of rebloomers, the shorter kind so I can use them as borders. The box came, and I managed to get hers into the ground in her yard. Not all of them looked that good, but I hope they do OK. My soil is better, so I have high hopes for mine.

Then I went out into the yard this morning. The planting turned quickly into an emergency garden rescue. Virginia creeper has completely overrun everything, with its choking broadleaf cover and strangling vine. And after almost two hours of tugging, pulling, pruning, and praying, I managed to at least see some of my plants. I know I have lost some.

I only managed this in one small corner of the garden, and not the one I wanted to put the lilies.

Too exhausted to continue, I returned to the house. The boys are still sleeping. Joey's new interventions caused a late bedtime, so even he was still asleep. I looked around. stuff piled everywhere. Boxes of me trying to get control of stuff stacked everywhere. Trash from Joey eating popsicles strewn over the floor. An attempt to organize a snack control center, half done. The couch torn apart because the cats hit it again, and I had to spray it down. Bags with random items needed from the store stacked on a chair- none of the projects having yet been attempted.

I poured myself some cold tea, sat down, and cried.

It is Fourth of July today. I have my awesome fruit salad to make, boys to take to Ferry Farm for another attempt at understanding colonial America this year, and a cookout to prep. Its just us and my mom, but I wanted the garden to be useable and the fireworks to be fun. And all I can see is mess. And folks, I ain't a neatnick by any stretch of the imagination.

I can hear the boys stirring. Time for a cold cloth on my eyes for a few minutes before they wander down the stairs. And I need a change of clothes if we are heading out to Ferry Farm today.

Art Needs No Words

The Sovereign Child and The Change of Plans

Joey was awesome last week in his Production Camp with Stage Door Stars. He rocked it, they rocked it, the week was awesome and the play was fabulous. He was Baloo the Bear in the Jungle Book. You know he rocked it.

So he was totally excited this week to be in Dance Camp. After all, Joey loves to dance.

No, wait, let me type that properly: Joey LURVS to dance.

Get him up on stage and let him dance? Oh, yeah, he was all about it. The theater productions are so inclusive, and wonderful, and fun, we were very, very excited to be doing a dance routine. Joey was all grins.

Better yet, we got the awesome young man who was Joey's assigned aide last year as his dance camp aide. Huzzah! Mr. Dan rocks the house! I watched him beam all the way to the auditorium, and then dutifully left to let Joey do his Joey thing.

Needless to say, I was confounded and saddened to be met at the door at five o'clock by the camp director and a person I believe was the special ed person for the camp, telling me Joey had refused to dance. He had been upset, refused to do anything, and finally they let him do some painting with his buddy in a break room. In fact, he had painted for a good half and hour. Did I mention that Joey isn't much into art projects?

We talked about making schedules and breaks and other stuff, and decided to just try again the next day. Today. I found out from another parent who had seen the initial issue that he seemed to think he had been teased, and that's where it all started. And I noticed as we were leaving that there was a little girl in the dance camp with whom Joey does not particularly get along. Hmm.

I should be more specific about that. I noticed the little girl's mother. (And I should also note that these are very nice people, and the little girl is just fine, she and Joey just don't mix well).

He wasn't so happy about it when I dropped him off, but I sent him in reinforced with a checkers set and a extra bottle of water.

The call came just before 3. Could I come get Joey? He was not participating and was being "defiant." Cussing under my breath that people who work with special needs kids don't know the difference between a defiant child and a stressed out over-anxious child trying to communicate, I left Andy with Grandma and headed over to camp to see what the flying flip was going on.

They were awaiting me at the front desk, confused. They know Joey loves to dance. The dance teacher came over, and insisted Joey could do all these things, he was just refusing to, and there was just something about her attitude that made my ears prick and set off me "doesn't get it" radar. One thing we have learned is that people who work with special needs kids often don't really understand autism. They can work with a lot of other kinds of disabilities, and completely miss how to work with an autistic child.The very wordiness of her manner put me on guard. When I asked if we could teach him his routine for the show one-on-one, she said something about not being fair to the other students. Something was not right here. I decided it was time to ask Joey what was going on, and I wanted to do it while we were still in the building, to see if we could fix the breach.

He was in an art room, pretending to drive a car and making rings out of pipecleaners "to pay for treasure!" He seemed actually pretty content, with his buddy, making stuff. I made some inquiries. They showed me a dance move- a Travolta-esque point, where he had to cross his body with his arm. Joey started getting upset when he saw it. I tried to get him to show it to me, but the cross-the-midline move was not helping whatever was wrong. Then the young lady from the dance class (not the dance teacher, but a helper-teacher) said something about "popping" her knee- ie, to bend it out in a quick motion. The word bothered Joey, and honestly I think it confused him. But I did get him to make the move, and asked if we could now learn the next one- perhaps I could help break it down and teach him. The dance teacher was called.

She came in, and said the next thing to do was a plié. Now, if you have never had a dance class in your life like me, this is what that is. Actually, if you go to that page, note that what they wanted was technically a "demi-plié." Anyhow, after the young lady explained it to me, and the teacher fussed about how she had told Joey what it was yesterday, and how awkward it was for me to do, I can understand why Joey might not be happy about this. What happened to fun stage-dancing and learning a little routine to enjoy being on the stage? Joey squealed that he would fall over, and the teacher said they had done it with a bar yesterday, and he could do it with a chair. Only she used a lot more words than that. I couldn't get her to be quiet while I tried to delve the mystery and perhaps give this a try.

Then the next bomb dropped: Joey was going to be the star of the show, because he was the only boy, and the next dance move was going to be with a girl!

Ok, seriously? He's an eleven-year-old boy who has never had a lick of formal dance training in his life. So they sent him into a room full of girls, and then wanted him to dance with one, right away? But wait- it gets better. Because the class trooped in to do an art project for the stage set... almost a dozen young ladies, ranging from about eight to about fourteen, and all wearing adorable little dance leotards and stockings.

And they thought Joey would not feel something was amiss here?

Nobody mentioned to me that he should have special dance clothes. I am sure he was not expecting to walk into what, to him, looked like a ballerina school; and it is likely that those young ladies did find him amusing.

Naturally, Joey fled to the hall, and we had a chat. We talked about not having people laughing at you stop you from doing something you love. Then, we talked about being the only boy in the room, and that made him uncomfortable. Finally, we talked about art camp- perhaps he could do dance next year, and do art camp this year?

Because you know what? I wasn't going to force Joey to go back into a room full of giggling girls and try to learn to dance in front of them, when he was telling me he didn't like them watching him learn to dance. Especially when he was telling me so. As in, with words. He was pulling together the words to express what he had been telling us for almost two days. I am so, so proud of him for being able to do that, and work it out between us and find those words: I'm uncomfortable. They are laughing at me. I don't want girls watching me learn to dance.

The art class was working on Matisse collages- cutting out shapes and pasting them to paper. It was much more relaxed. We got Joey some orange paper (he's very into orange right now), scissors, and there was a box of markers. Cutting out the shapes directly made him anxious, so we let him draw some. I showed him how a random cut could look like something, like looking at clouds. Dan showed him that after you cut out a shape you've drawn, when you turn it over, its just a shape. We ended up with a masterwork: a bear with fruit, which Joey is calling "The Bare Necessities."

I can hardly wait for the art show on Friday.

Finding the right words

We walk together up to the school, Andy running circles (literally) around us. He is all grins and giggles, excited to be starting his drama camp, one of his favorite weeks of the year.

"Amputate! I know what amputate means!" he chimes cheerfully, my little human dictionary stimming on his newest favorite topic: word definitions. "To cut off! Rightmommy?" He tends to pick words that are uncomfortable and need extra processing.

"That's right!" I reply, half-automatic in my response, more interested in enjoying his ear-to-ear smile- the kind that have become increasingly rare, that light up his whole being and all the world all around him. "Can you think of a positive word for today?" I have been trying to encourage him to perseverate on words that won't make people around him uncomfortable, rather than trying to make him stop altogether.

"Negative words mean 'no'," he nods sagely, but the smile remains. "Is 'negative' a negative word, Mommy? Negative means 'no', rightmommy?"

"It is," I offer another affirmation. "How about 'exquisite'?" This was a favorite word a couple weeks ago, so I am hopeful he will pick it up, but he shakes his head.

"This is a blissful day, Mommy," he sighs happily, choosing another favorite positive word instead. "Bliss means, 'full of joy' rightmommy?"

"Just like you," I kiss his bright cheek, and we are in the door, Andy dancing in behind us.

Two minutes later, he is off to do his thing, with his friends. I can hear him as he heads down the hall, "I know what 'drab' means..."

That's my boy.

No Excuses

People love Joey. He's a sweet, loving, adorable child. He has a big smile and a big laugh and a way of letting you know the world is awesome. He wants to know you and accept you and love you.

Joey is also eleven years old, over five feet tall, and about 200 pounds. He's a big kid, about to hit puberty, big-time. His emotional and social development is as splintered as so many of his other skill sets- advanced, delayed, and everything in-between. The world holds a lot of frustrations for my little man, and self-regulation can be problematic.

Reading about caregivers who murder their autistic children is not only terrifying, depressing, and frustrating, it is horrifying to see how many people believe that such murders are justified. Lack of services, lack of support, the child was getting big, aggressive, unmanageable... people, these are not good reasons to murder someone.Would it be acceptable if the victim of the murder was not disabled? NO. And believe me, lots of teenagers can seen big, aggressive, and unmanageable, without being autistic. Somehow, when the victim is disabled, is autistic, all the sudden the caregiver becomes the victim, and victim becomes... what? The aggressor?

Yes, the aggressor. That is what we can conclude by the "poor caregiver!" attitude prevalent in these news items: the person murdered brought it on themselves, by being big and "unmanageable" and needing care and services. They get swept aside as a sort of sacrifice to our society's greed and cold capitalism. After all, people with disabilities are often seen as a drain on society, needing support and services and hey those things cost money and poor caregivers...

Yes, we need to fix the services, and make it easier to get services. But we shouldn't be murdering children to prove that point. No one should have to be some kind of sacrificial lamb, dismissed as a blood offering to... who? Our poor, poor taxpayers?

Joey is getting big. He's getting increasingly frustrated. Teen angst isn't going to help. He's come at me before. He's likely to come at me again. I'll probably have some bruises before we get through these next few years. Who will be to blame for those bruises?

I am the adult here. No blame, no shame. Just do what is needful, as best I can.

There is no excuse for murdering a person over "lack of services." Being a teenager is not an excuse to murder a person. Being poor is no excuse to murder a person. When we claim these are justifications for murder, we are denying the personhood of a human being. There is no excuse for that.

No matter how big, frustrated, hormone-fueled, and yes, even aggressive Joey may get, he is still my baby, my son, my love and my joy. I am his Mom, and would gladly give up my own life to give him every possible minute he can have. His life is his, not mine.

His life is worth living.

No excuse would ever change that.

Starting the Day The Non-Verbal Way

I got a big reminder today of something that had been faded into the background for a few years for us. A big reminder of something that should always be remembered.

Today, Joey started his day non-verbal. For a good twenty minutes, he was unable to speak.

It was a little startling. I noticed he was quiet, but he had woken up grumpy, so I just thought maybe he had calmed down and was thinking or something. So I asked him how he was feeling. This question has become part of routine for us in the last couple of weeks, and it refers to a color chart associated with emotion; I was expecting a color word (red, yellow, green, blue). I was particularly interested in this particular zone system because color words are something Joey tends to retain, even when he has few words to use; and this has been so since he was very small. There were a few early months of speech when he would answer questions with colors- especially if he didn't understand the question.

"How are you feeling?" I asked again, realizing I had gotten no response, even though I was searching for his raincoat. I waited; processing can be a little delayed in the morning, especially a grumpy morning. I stopped searching. I looked at him. He was looking at me, his face slack, but his eyes... I remember that look. It was the one he used to give us when he came home from school, and was silent for 20-30 minutes because he was out of words. I blinked.

"Are you in the blue zone, baby?" I prompted, trying to feed him a word he could cling to and echo for me. Instead, he turned away, picked up his backpack, started playing with the door.

This is a phenomenon we have trouble getting Joey's teachers and friends to really understand. I know Joey could speak ten minutes ago. However, he cannot do it right now. Trying to force him is just going to overwhelm him. This can be true of any number of skills, but language is particularly crucial- and notable. He understood what I was saying, but he could not answer the question. He had no language for that. I still don't know why.

With the raincoat MIA, we sat outside together, me clutching an umbrella, he with his head on my shoulder. Often in the morning, we chat together for these few minutes. I let him tell me anything he wants to say, ask me anything he wants to know. Sometimes we just script, sometimes we have real conversation, sometimes he wants me to read something, sometimes he wants to sing. It's all good. Today, we sat in silence. I didn't want to burden him with words. He nuzzled my shoulder, silent. It was the "I love you" script, just wordless.

When the bus came, I opened the umbrella, and out we walked together. Halfway, his words returned.

"The rain is getting on me!" I moved the umbrella, but the usual stream of script I would normally hear was absent. We reach the bus door, and as he climbed up the stairs, he called out, "Thank you, Mommy!"

You'll be happy to know the rest of his school day was green.

Sometimes, you just have to have some time to be silent and get that brain together. No problemo.

A Different Road

I applied for a full-time gig this week, the position my college opened up was an awesome full-time prof position, closed, and now has re-opened as a full-time teaching slog. The good news is, I love teaching, so I'm all about the slog. Shame they did it so they don't have to pay as much.

The other good news is the change is likely to keep the grubby paws of academic hotshots off my job. Most academics aren't really into teaching. They are into their research, the world of publish-or-perish, the slog of conferences and journal publishers. They don't want to have a 6-7 course load each semester. And hey, since I haven't published anything, I'd be at serious disadvantage if it was a real prof gig.

Sitting in the park, I find myself in a sea of talk about therapies, strategies, methodologies. Our little group is planning how to get through the summer with our little group of kids. They have been together all year in a social skills group, but the facilitator left at the end of the program and won't be replaced until the fall. Andy is ADHD, the other kids are autistic, all of them less affected in oral communication than Joey. We are at the park, letting them play together with one of the attendants the one mom hires through her Medicaid waiver (though for the two hours we are in the park, he's being private-paid, since we're all using him), and the guy is awesome. Meanwhile, we are looking at our options, reviewing programs, tools, ideas for getting us together through the summer.

I'm fond of the program they have been using, Social Thinking, and we're going to adapt the Movie Time curriculum for abbreviated summer. The table is scattered with other tools. They all look awesome. There's a whole kit for emotion recognition, complete with velcro charts. There are lesson plans for programs, including the one we're going to do. There is talk of websites and camps and programs designed for our kids.

I wonder what parents of kids without special needs talk about.

I've never gotten to write my article about pilgrimage, I think sadly. I have all of this to learn about now. I don't even have time to think about India or stupas or ancient inscriptions. I now have to be an expert occupational therapist, speech therapist, behavior therapist, and psychologist. Oh, and a lawyer, teacher, and intervention specialist. It's a good thing I'm trained to research and analyze; and even so, I find myself drowning in a sea of information. I have to sift through the sands to find what works, and separate it from the woo and semi-woo. Instead of traveling to conferences and writing about art, I spend all my energy traveling to therapies and listening in waiting rooms, trying to understand why certain strategies work and think about whether or not they would work for either of my boys. I try to find energy for putting the strategies and programs in place, or get my boys to the opportunities to grab their attention, focus their energies, and allow for growth. Or at least a taste of something good, a break from the constant challenge and work that encompasses their lives in meeting their challenges. Respite is good for the soul, even for the kids.

Once upon a time, my plan was to be in Varanasi this summer. Joey is eleven. Andy is nine. It would have given them a good taste of the world, a new look at their lives and their values. Such avenues to open and look down and wonder about, new ideas to think about, new visions, new smells, new sounds, new foods. I would take them over to the silk shop and have kurtas made for them. They could watch the geckos on the walls at night. We could dip our feet in the Ganges. There are plenty of children there, new friends to meet. We could have taken a ride in a motor rickshaw out to Sarnath, or just wandered along the ghats.

But that's not my life anymore.

I'll be super-happy if I get the full-time teaching gig. Even though its just teaching 101 and 102, maybe 106 (Modern/Contemporary art), I'll still be opening up eyes and minds to the new world of art- observation, analysis, and communication. There's plenty to do with that, too, keeping abreast of the latest ideas about Michelangelo or Archaic Greece. And maybe I can get it together and take the boys to the Freer/Sackler one weekend. At least give them a little taste of what Mommy dreams.

On Sixteen Years

I've been married 16 years today.



I've learned some things in 16 years.


Split the load. One cooks, the other cleans. One does the laundry, the other scrubs the bathroom. One picks up, the other dusts and vacuums. One deals with this meltdown, the other deals with the other one happening at the exact same moment.
Warm up your toes before bedtime.
Dream about winning the lottery- together.
You never really run out of things to say. You just sometimes run out of energy for using words to say them. And that can be OK, as long as you communicate.
Coming home to find one of your chores done for you is awesome. Do it for the other person once in a while, too.
The person who works all day is not the person who should be planning dinner.
Headphones are your friend.
If it bothers you that it isn't being done, do it. If it hasn't been getting done, it's not bothering the other person.
Never miss an opportunity to smooch.
Let the other person do the stuff they do best. You don't have to do everything.
Cats make good chaperones.
If you take good care of each other, you are both well cared-for.
Listen.
Cellphones with texting rock. Being able to text something to the spouse when you think of it in the middle of the day is awesome.
It's OK to let the other one move the furniture around.
The best present is time.
If it's about the in-laws, leave it to the spouse. Support the spouse in their position, no matter what it is.
Blog about their awesomeness.

Happy Anniversary, JoeyAndyDad. You rock.

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.

Autism Understanding: Yet Another Day

Brother to Brother
Hand in hand
They wend down to the water
Across the sand.


I don't think there have ever been two brothers more loving of each other than Joey and Andy. There may, in this world, be equals, but none greater. It simply would be impossible.

I won't say they get along all the time. Their abilities, their challenges, their personalities, their differences preclude complete harmony at all levels and all times. Like anyone else in constant close quarters with huge amounts of trust between them, they bicker and fight and let it all out. But it doesn't cleave between them. They are brother to brother, always.

Even when they were very little, there was that understanding between them. Joey didn't let kids pick on Andy; he protected his brother, hugged on him, loved him. And Andy didn't let people exclude Joey. He stopped and explained the game, let Joey catch up and catch on. Andy is more of a dynamic player now, with less patience to wait for Joey to join in and catch on; but then, he's 8, not 18. And he almost always invites Joey to play- periodically, throughout the time at the park or wherever.

They were both out of sorts at soccer yesterday, no doubt about it. Andy was brittle, to the point the coach came over and asked for my advice (and he's ADHD, too, so he has some grasp on how to deal with ADHD kids). Joey was bored and tired and hungry. I knew I had a brewing disaster on my hands, and had called in the cavalry, but it was 20 minutes away.

Andy was scowling, kicking a ball back and forth across the field while the other kids were doing some exercises that involved jumping over the ball alot. It was an exercise he was not very good at, and that frustrated him all the more. It was time for intervention to bring Andy to a better place so he could participate. I moved to intercept him, and he turned midfield and started away from me. I waited. He turned to come back across the field in his pattern, looked up, and with a grumpy frown, pointed and grunted. A flick of my eyes to the bench where Joey had been, now empty, told me the issue. Now Andy made a louder noise, no words yet, but with more distress in his face.

"I can't go deal with him until you stop this unexpected behavior and do what you are expected to be doing," I explained calmly, but firmly. I knew Joey was headed to the bridge that went to another set of playfields, but there was a set path; I would be able to catch him without much difficulty. Andy, however, did not know the path beyond that bridge- and he took off at a run to catch his brother. Grumpy, tired, and irritable as he was, to him, Joey was in danger.

At least they'll now be moving in the same direction, was my initial, very tired and irritable, thought as I trotted after him. I didn't put on speed because I wanted Andy to catch Joey first. It was important that Andy, once alarmed, was able to feel like he did something. I learned that a while back. He needed to be part of helping Joey when Joey was distressed. It actually helps him to do something that seems useful, instead of having to cower in his room during a meltdown or stand in panicked indecision during a bolt.

And two minutes later, they came back across the bridge, hand-in-hand. I could hear them talking to each other about expected and unexpected behavior. Andy was upbraiding Joey for his "unexpected running." Joey was telling Andy he was "expected to be playing soccer now."

Andy went back to his team. Joey came back to the bench. And the world righted itself for a few precious minutes.

Autism Understanding: Day 12

Baseball park
Joey jumps in
Sound of laughter


There's nothing quite like watching Joey on the baseball field. When we first started Challenger's Baseball, Joey knew nothing about baseball. He didn't know how to hold a bat, what a base was, or even how to run- at 6 years old, he was still using a toddler trot. He took to it like a fish in water. There were high school baseball players out helping, people cheering, and holy cow, it's fun! Joey lights up on game day. His running and movement improves drastically between the beginning and end of the season (unfortunately, he often doesn't retain that progress out of season). He thanks the "big players" for helping.

Our local program has expanded to 8 teams, so the smaller and older players are now separated. Joey moved up to the Big Kids teams this past fall. Unfortunately, his best baseball friend is a year behind him, and so no longer on his team. He got to see her Opening Day. He was overheard telling her, "There is nothing more important than our friendship!"

This summer, I am going to again attempt a little program to help Joey connect with friends and think about them, even when they are not immediately present- through letter-writing. I thought I might even set up an email account for him, so he can start thinking about how to use it and learn the rules of email use and etiquette. Joey is so social, and loves to be around people so much, I am hoping it will make him happy to continue to feel connected to people, even when they are not right in front of him. I thought a bulletin board with photos of his friends might even be a good visual cue for him.

I'll keep you posted. And maybe, just maybe, Joey will, too.