Monday, December 31, 2012

The One-Man Penguin Plunge

I'd like to think Ryan just learned an important lesson - that thin ice will not hold your weight -  but I don't think he actually did.

After an afternoon of sledding, Ryan was walking along the edge of his favorite duck pond and must have noticed a microscopic film of ice on the water. As is his nature, he jumped onto it with both feet without testing or thinking. And the next thing we knew he was up to his neck in icy water.

We pulled him out,  rushed him to our car, stripped off his wet socks and snowpants, cranked up the heat, and got him home as quickly as we could.

I scolded him about the dangers of stepping on thin ice, but I have no reason to believe this lesson has left any impression: even while still soaking wet and being dragged from the pond, Ryan was asking if he could still chase the geese.

Jumping Jesus on a pogo stick, no you can not.

This is the scary side of learning disability: the inability to learn from one's own experiences. I imagine a typical kid, after jumping onto thin ice and landing in a freezing cold pond, would connect effect with cause and would think twice before trying such a stunt again. But based on his history, I have no reason to expect his days of falling through thin ice are over.

Stu has suggested keeping towels and blankets in the trunk from now on. My mother recommended starting my New Year's drinking early. I am thankful to be surrounded by such wise people.

Happy New Year!

Friday, December 21, 2012

Rest in Peace, Nancy Lanza

As the mother of a seven-year-old in Connecticut, I spent most of the last week trying not to imagine my son as one of the young Sandy Hook victims. As stories came out about victims with special needs and their one-on-one aides, this became harder and harder. Any one of those children could be my child.

It takes only slightly more imagination to identify with Nancy Lanza, a divorced mother trying her best to raise a son with special needs on her own. I've read reports that she had fought to get her son appropriate services through their school district but eventually felt the need to home-school him. Her only respite was brief overnight trips alone.

People with paranoid schizophrenia and other conditions that cause psychotic episodes have been known to lash out violently at the people who love them most. Explains the widower of a victim of such a tragedy, mothers are vulnerable to these attacks “Because they love their kids enough to continue to care for them when nobody else will help."

Nancy Lanza took care of her disabled son as well as she could, making great sacrifices and putting herself at tremendous risk, because she loved him. I honor that love - the kind of love every mother has for her children. Let our nation honor that love by making it easier for families like the Lanzas to get the psychiatric support they need.


Monday, December 17, 2012

What if?

My fifth grade teacher had set up a tv on a cart so we could see the Challenger launch. Moments later, we saw strange caterpillar-shaped clouds in the sky, and we knew all the astronauts were dead. I remember staring at the tv, unable to process what I had just seen.

Honestly, I almost didn't include this photo, because it still makes me sick.
I remember Mrs. Ramos turning off the tv and quickly changing the subject - time for math or something - and pointedly ignoring what we had just witnessed.

Thinking about it 27 years later, I still get tense. I have only watched live coverage of a shuttle launch once since then, and my stomach was in knots the whole time.

What if?

What if that improbable, horrible thing happens again?

What if more astronauts fell from the sky before our eyes? How would their families feel? How would the modern equivalent of Christa McAuliffe's students cope with the loss of their teacher?


This morning I got all teary putting Ryan on the school bus.

What if?

What if something horrific happened during the school day and this was the last time I would ever see him?

Obviously the odds are greatly in our favor that he will come home as usual, throw his coat on the floor, begrudgingly pick it up and hang it in the closet, and run in quick circles around the house.

But what if?

As the mother of a seven-year-old in the state of Connecticut, last Friday's unspeakable tragedy hit way too close to home. It was too easy to imagine being one of the parents in the school parking lot waiting to be reunited with my first-grader.

As the mother of a child with special needs, I tried to imagine how he would react if his school were under siege. It's unlikely he would be able to follow his teacher's instructions to remain still and quiet. I imagine his talking/shouting/singing/wiggling would draw the gunman's attention and doom his entire class.

If he were a witness to a shooting, would he understand what he was seeing? Would he be able to communicate to me what he had seen? Would he be able to tell us how he felt about it?

Scariest of all, what if my own child suffered from violent psychotic episodes? How would I prevent him from hurting people? How would I be able to continue to love him if he did? This part is way outside my ability to imagine - I recommend Christina Shaver's recent post on the subject.



My heart aches for all the families affected.

Thursday, December 13, 2012

The Trooper

Last weekend, Ryan battled the Rat King in The Nutcracker.
Ryan is the short one pointing his sword straight ahead.
Curtain call, at which the kids sang endless choruses of Jingle Bells.
I'm told he did well - I didn't get to see much of anything, because my job was to keep Ryan calm backstage.

A rare moment when he wasn't running up and down the hall.
So mostly I can report on the intensity of the energy of a dressing room full of anxious autistic boys (with all the flapping I'm surprised nobody took flight).

But I can definitely tell you Ryan was proud of himself - that he has referenced the show several times this week, reminding me "I danced on the stage."

And that the whole time he was off stage, he kept asking if he could go back on.

And that he was so entranced by the ballerinas that while we were watching them from the back of the house during the dress rehearsal he was able to ignore the giant numbers on the backs of the auditorium chairs.

And that he's a serious trooper, because it turned out he did the show with a stomach bug brewing (My first clue something was wrong was when went to Friendly's after the show and he barely touched his ice cream. Then he curled up in my lap and announced he needed to "go home and rest in bed." By the time we got home, he had a 102 degree fever.)

And I can tell you that all of the dancers with special needs seemed thrilled with their performance. As they should.




Sunday, December 2, 2012

Christmas is still very far away

Remember three years ago, when I was disappointed that Ryan didn't seem to anticipate Christmas? That he didn't even seem to realize it was a special occasion?

Yeah, that was SO three years ago.

Ryan has been obsessed with Christmas since Halloween. Obsessed.

He has worn his Santa hat both to school and to bed.


He has watched Curious George's A Very Monkey Christmas at least 15 times in the last month - sometimes twice a day - and has had the three songs from that movie on constant repeat on my iPod.

He decorated the table-top fake tree in his bedroom a couple of weeks ago.

He bugged me for days until I relented and helped him bake a gingerbread house.

When we finally went out and got a tree for the living room, he spent a good long time just lying peacefully on the couch, staring at the tree in utter contentment.

He has been counting the days for a full month already, and he still has 23 days to wait. Frequently, he will script "Christmas is still very far away" with a heavy sigh.

He still hasn't bought into the whole writing-to-Santa thing. Despite prompting he has shown zero interest in making a Christmas list and hasn't otherwise indicated there's anything he wants to receive as a gift. I've tried to coax him to think about what sort of present he should give to his daddy, but I've made no headway.

But this year, I know he Gets It. In a magical, profound way, he is filled with Christmas Spirit, radiating a kind of joy and peace I don't see on his face the rest of the year.

And if that isn't a true-blue miracle, I don't know what one is.



Wednesday, November 28, 2012

I Caught Him!

I caught him!

In another for the "Atypical Kid Does Typical Naughty Thing And Mom Kvells" file, I caught Ryan looking around to see if I was nearby before doing something he knew he wasn't supposed to do.

Ryan loves playing with my garden shears. "Clippers!" he demands. He finds it soothing to clip tiny bits off branches, and since it's a good hand exercise for him, I allow him - but my rule is he can only cut brown stuff, not green stuff. For whatever reason, he prefers clipping green stuff; he knows this annoys me.

So this afternoon, I was watching from the kitchen window as he was clipping away at a dead branch. Then he started looking around. He took a few steps sideways, looked around some more, moved closer to a very-much-alive little tree, looked around some more. Then he started clipping green stuff.

Of course, I had to come out right at that moment and call him on it, but I'm thrilled about his perfectly-typical deception. It demonstrates an understanding of rules and expectations, and that a person can't see something if she's not there. This is the sort of thing that would have made his preschool teacher cheer.

Monday, November 19, 2012

And he's watching us all with the eyeeeeee....

Ryan tends to be something of a quitter. He gets easily frustrated when he can't make a toy stand up the way he wants to and cries, "YOU can do it." If he doesn't instantly see the item he wants, he has a meltdown, crying that the thing in question is "lost," but he won't participate in the act of looking for the missing object, even when reminded that looking for the missing thing might actually help him find it.

That said, he has moments of tremendous drive and ambition.

We went to our local Bounce U. It's an amazing indoor play place that has rooms and rooms of bouncy castles. Any inflatable plaything you can think of, it's there. After a two-hour open session there, Ryan actually put himself down for a three-hour nap.

Ryan had been there once before with a school trip, but it was my first visit. Man, I wish there had been something like that when I was a kid (and that I had been the kind of kid who would have enjoyed it the way I would now. Scratch that, I wish they had adult sessions.) They divide the open-bounce session in halves - the kids spend the first half in one room, and the second half in another room full of completely different bouncy stuff. During the first half, Ryan kept asking if it was time to go into the second room - over and over and over again. When the second room opened, he ran straight for this thing:

The bottom level is a trampoline, and the four layers above it are nylon webs. The kids have to climb straight up through all the webs to get to the top of a huge inflated slide. It was challenging for all of the kids - the nylon straps sag when you step on them, so it's hard to push off with your feet - but it was really challenging for Ryan. Really. Challenging. Kids were passing him left and right. Boys stepped on him on their way up. Kids on line were getting impatient because only four people were allowed in the tube at a time.

But Ryan kept trying.

I swear I'm not making this up: several minutes into his attempt to reach the second web level, this music came on the stereo:
video
Eye of the Tiger played all the way through and he still hadn't reached the second level. But he kept trying.

And after Lord-knows how long, he reached the second web.

And the third.

And the fourth.

And he went down the slide.

And after he had bounced on everything else in the room, he went back to the web thingy and did it again.


Thursday, November 15, 2012

The Nutcracker

One thing I really appreciate about our recent move is that there are far more opportunities for Ryan. Our town has an Adaptive Recreation program. For a small fee you can enroll your kids with special needs in adaptive ballet/musical theater, adaptive tennis, a social skills group, or a hang-out-with-other-kids-like-you session.

I signed Ryan up for Musical Theater, partly because I thought he would like it, and partly because being in musicals was the focus of my entire childhood. I was in or behind at least 2 shows a year from ages 5-21, and then I continued my behind-the-scenes theater career until Ryan was born. Everything I've ever needed to know I learned in theater: discipline; structure; the importance of practice; history; body awareness; public speaking; empathy; spacial awareness; storytelling; cooperation; tolerance; professionalism; responsibility; community; a sense of purpose.

So I signed Ryan up for Adaptive Musical Theater, which merged with Adaptive Ballet. The group will be performing its third annual Adaptive Nutcracker. I'm not a big fan of The Nutcracker, or of ballet in general, but I'm a big fan of this production. The steps are simple and poorly executed, and Clara has never been less graceful, but I'm thrilled that Ryan is involved.



Ryan is the youngest of the kids, by a lot - he's a full head shorter than anyone else involved. The rest of the kids are 12-18, and have all been involved with The Nutcracker for years. I don't know what their specific diagnoses are - some seem autistic, one shows signs of hyperactivity, there's a boy in a wheelchair, another who maybe has some sort of chromosomal thing going on (along with hyper flexibility), and some just seem Not Quite Right.

The group is lead by a retired ballerina and a gaggle of perky neurotypical high school-age girls from the New England Ballet. These girls act as mentors for the special needs kids, gently reminding them of the choreography and keeping them on task.

And if one of the dancers suddenly freaks out, everyone understands.

And if someone on the sidelines is giggling uncontrollably, that's ok.

And if the Mouse King needs a para on stage with him in the battle scene, the para gets his own sword and no one bats an eye.


Ryan seems to be having a wonderful time being a soldier. He may not do all the steps properly or at the right time, but his joy is contagious. And he's the baby of the group, so he gets extra attention from everyone.

I sit with the other moms and marvel that their kids, who have been dancing in this group together for a few years, are truly friends. They cheer for each other, treat each other respectfully regardless of ability, and hug each other goodbye.

It's an environment where everyone truly Understands.

I have a feeling we'll be sticking around.


Friday, November 9, 2012

He's lucky he's cute

In a sample of 1,200 children with autism, 49% had wandered, bolted or "eloped" at least once after age 4; 26% went missing long enough to cause their family concern. By comparison, only 13% of 1,076 siblings without autism had ever wandered off at or after age 4, developmentally the age when such behavior becomes less common, finds the study published today in Pediatrics. Among children with autism who went missing, 65% had close calls with traffic; 24% were in danger of drowning.

"Elopement is one of the very few problems in autism that is life-threatening," says pediatrician Paul Law.... "It is probably one of the leading, if not the leading, causes of death in children with autism," he says.

- USA Today 10/8/12
Thursday was a snow day. You know, because school being closed for a week for Frankenstorm and then again Tuesday for Election Day wasn't enough of a disruption to our routine. So Ryan was playing in the snow in our yard, and I was wandering in and out of the house, sometimes playing with him, sometimes enjoying being warm with a cup of tea like a civilized grown-up. I marveled at the fact that I could leave him in the yard to play on his own - a huge change from last winter, when we lived in a 9th floor apartment and I had to watch him constantly to make sure he wasn't running off somewhere.

So he's playing outside, and I suggested, "Would you like to go sledding? I'll go inside and look up where we can go, and then we can get your snow pants and go sledding later." I went to the computer, looked at maps, figured out a likely place to sled. I did a few of minutes of work, as long as Ryan was content playing outside. Then I went to check on him.

And he was gone.

I searched the back yard, the front yard, inside the house. I looked for footprints in the snow that would indicate where he had gone. No clues.

Then I noticed the sled was missing from the porch. And I realized that all Ryan had heard me say before was "Would you like to go sledding." So he had taken the sled in search of a hill.

I suppressed a heart attack and thought like Ryan. Wednesday afternoon, he and I had taken a walk around the neighborhood looking for someplace to go sledding; we found nothing, and we got pelted with icy wind the whole mile we ended up walking. So using Ryan logic, I figured he had probably taken off on the same route we had walked the previous day. I got in my car and drove slowly through the neighborhood, retracing our Wednesday steps.

And there he was, at the halfway point of the route, just hanging out on the side of the road with a sled.

I got out of the car and started shouting, "What the hell were you thinking?" while pulling him into a hug. He clearly had no idea he had done anything wrong.

"Sledding," he explained.

I threw his sled into the car and told him to get in.

"Where are my snow pants?" he asked.

"They're at home. Where you're supposed to be."

I made a speech about how he can't leave our yard without telling me where he's going; he ignored me and requested hot chocolate.

An hour later, I tried explaining the problem again.

"When you left home before, I didn't know where you were, and I was very worried."

Something about this registered with him. His face looked concerned and surprised, and he gave me the most sincere "I'm sorry, Mommy" he could muster.

But I know this won't stop him from going off on his own in the future. The police have brought him back to me before, and I won't be surprised if something similar happens again.

My mother suggested I have a RFID chip implanted in Ryan's ear. I'm investigating more realistic solutions first.


Wednesday, November 7, 2012

Why this election was important to me

[Note: I'm about to get really personal. There's stuff in this post I've only told to maybe half a dozen people. Ever. I'll probably alienate a bunch of readers and make family dinners even more akwkard, but I was raised to say what I think, and this post has been a long time coming. It has everything to do with me, and nothing to do with autism.]

My first two years of college, I was in an emotionally-abusive relationship. I was young and troubled and didn't think I deserved any better. He slept with my best friend for months, then convinced me to stay with him because really, they had just been trying to take the pressure off me because I hadn't felt ready to sleep with him myself. I thought I loved him. We talked about getting married someday. My former best friend accused him of having raped her. I stayed with him. He tried to convince me to move away with him and not tell my parents where I had gone.

Then, the second summer of our relationship, a condom broke.

And I had a choice to make.

I could choose to entwine my life with this jerk forever, or I could choose to stand up for myself and become stronger.

It was the best choice I've ever made.

If the government had reached into my home and forced me to carry that baby to term, I wouldn't have finished college.

Which means I wouldn't have had that internship where I met Stu's college roommate.

And I wouldn't have met Stu.

I wouldn't have gone to grad school.

I wouldn't have fulfilled my dream of starting a (short-lived) theater company.

And I wouldn't have had Ryan.


My life so far has been a fantastic journey toward self-acceptance and self-love, toward trust and empathy, toward walking the talk. And for me, the ability to make my own choices has been the whole game. Choosing is power, no matter what decision you make. Letting someone else decide your fate leaves you as an observer, not a participant in your own life.

For the past 18 years I have chosen to keep my most profound, life-changing experience largely to myself - I have dear friends I'm not sure if I've ever told about this. But I'm choosing to share this essential part of myself now because I'm finally at a place where I feel strong enough that I do not fear judgment from other people.

I don't want to start a debate about when life begins; I don't think any human is capable of answering that question with any authority. I feel as confident in my own belief on the subject as any mortal can, and I respect the various beliefs of other people. But I don't want our government to impose one man's belief on the subject on all 300,000,000 of us.

So I chose to vote to protect my right, and the right of all American women, to choose whether or not to bring an unwanted child into the world.

And I'm relieved millions of others chose to vote for Democratic Senators, Congressmen, and the President as well.

Saturday, November 3, 2012

Sandy: scenes from an autistic household

Tuesday evening, La Casa de Awesome.
 
Ryan:     Can I watch tv before the lights come on?

Mom:     No, baby, there's no electricity. The tv needs electricity.

Ryan:     I can not turn on the lights!

Mom:    No, baby, the storm blew down the power lines. When the wind stops, the workers will start fixing the lines and they'll make the electricity work again.

Ryan stares out the window at the eerie sky and the shadowy trees bending at unnatural angles. 

Ryan:    Go away, Wind! Go away! (pause) I can not make the wind stop!

Mom:   No, you can't. Wouldn't that be cool if you could?

Ryan:   Can I watch tv before the lights come on?
----------

Wednesday night, Grandma Laurie's house. Ryan and Daddy have just returned from 15 minutes of trick-or-treating and half an hour of freaking out looking for a lost glove.

Ryan:    Can I have candy with no wheat in it? Does this candy has no wheat in it?
---------- 

Friday evening, Grandma Alice's house.

Mom:   Hey, Ryan, I just got a call from Daddy: the power is back on at our house! We have heat and lights again!

Ryan:   The power is back on at our house?

Mom:   Yes, we have electricity again!

Ryan:   We have 'lectricity again? Can we go to the new house? Can we go there, can we go?

Mom:   Yes, but I want to wait until after rush hour. We'll go after dinner.

Ryan:   Can we go to the new house? Can we go and have e-lec-tic-tristity?
----------

The Frankenstorm lived up to the hype. I hope all of you on the east coast are safe and that your families are well. Big thanks to the utility workers who got our power back up last night. These folks have been working hard and putting in long hours, and I'm mortified that some Connecticut residents have been less than patient.

Monday, October 22, 2012

Night of Too Many Tears

It's really weird watching a telethon when you know you might be one of its beneficiaries.

Special ed is wicked expensive, so I am thankful that Jon Stewart's Busboy Productions and Comedy Central present Night of Too Many Stars every couple of years to benefit organizations that provide appropriate educational services for kids on the spectrum.

When I was a kid I would watch the Jerry Lewis telethon. I'd see the images of kids struggling with muscular dystrophy, with their withered legs and twisted spines and cumbersome wheelchairs, and I'd just feel bad for them. These kids were totally Other to me: they were deformed, they needed help, they were charity cases. When I thought of Jerry's Kids, I thought of something along the lines of Urban Dictionary's current top definition of the phrase: "A retard who is behind some sort of window licking it whilst staring at you.Goodtimes."

I don't like to think of our family's life as a charity case, but really, we're not so different from Jerry's Kids. Our child has special needs that cost more than a typical child's, and there are warm-hearted people in the world who want to contribute to that (or maybe just want to buy the opportunity to pee with Seth Rogen).

But I'll tell you, what brought me to tears was that "Firework" duet with Katy Perry and Jodi DiPiazza, a little girl for whom autism education has paid off. (If you haven't seen it yet, get some tissues and click here.) I sobbed first from joy for all this child and her team have accomplished, then from anger and frustration that Ryan isn't yet in that same place.

But our work continues.

Have I mentioned that Ryan's going to perform in an adaptive production of The Nutcracker this winter? I'll write more about that soon, but after just two rehearsals I can already tell you this show won't be art, but it will be magical.

Tuesday, October 9, 2012

Expectations

Hello, Strangers.

I could easily say I have not written in a while because I've been busy with work. That statement would not be untrue.

More honestly, I have not forced myself to find time to write because I've been digging myself out of a very deep hole.

*****

A few weeks ago Ryan suddenly started having lots of accidents - there was a solid week when he wet the bed every night. I didn't know how to turn this situation around, so in addition to positive reinforcements (stickers! prizes!) for staying dry, I established a policy that if he wet the bed, he couldn't play on the computer before school. Ryan was miserable, I was sick of hearing him complain about the loss of computer privileges, and the bed was still wet every morning. This wasn't working for anyone.

I brought Ryan to the doctor to see if there was an underlying UTI causing the problem - there was not. The pediatrician said we were dealing with a behavioral response to something that Ryan was upset about. He told me to keep up the positive reinforcements but to change my attitude and let the punishment go.

And from that night on, we have not had a problem.

Somehow, Ryan was feeding on my anxiety, resulting in bedwetting, which fed my anxiety, which made him more upset, which led to more bedwetting. When I changed my expectations and relaxed, he was able to relax.

*****

I've been dealing with depression for the last twenty years, with varying degrees of success. The last year before we moved, I really felt like I had control of it - I actually felt good, not just good enough. But since the move this summer, things have turned ugly. Ugly enough that I've gone back into therapy for the first time in years - and I hate therapy.

Over the years I have seen many therapists, and they've all been basically the same person: pulling thoughtfully at their beards (even the women), holed up in dark, creepy offices full of Oriental rugs, all asking the same questions. Years ago I got to the point where I could predict what a therapist would ask me, so I decided to save myself the money and inconvenience and just ask myself those questions.

But I've found a local doctor who seems different - she doesn't even have a single Oriental rug! She is action-oriented, which I appreciate; instead of having me talk myself to death, she helps me build to-do lists that will remove some of the obstacles that have left me feeling stuck.

I'm making an effort to take better care of myself, and that starts with changing my expectations. When I started taking antidepressants twenty years ago, I thought I'd be on them for six months, tops. Since then, I've spent a lot of time feeling disappointed in myself that I still need them - as if controlling my depression without the use of medication would somehow indicate I was a better person. Moreover, I've spent a lot of time feeling disappointed that I have not been cured of depression - that even when I'm happy and engaged in my life, the sadness is always lurking in the background. That I can't remember a single moment in my adult life when I was 100% happy.

So, starting now, I am changing my expectations. I will stop expecting to be cured someday. I will accept that depression is something I have to learn to live with, because it's not going away. I will try not to beat myself up when there are moments I can't hold the sadness in. I will have good days and I will have less-good days.

Maybe a sticker chart would help me.

Tuesday, September 18, 2012

Searching for Our People

I was really pleased to learn that Ryan's school's PTA was hosting a Family Night. An opportunity to meet local parents! A chance to see Ryan's classmates! An excuse to get out of the house on a Friday night!

The event was billed as a pizza and ice cream party, and it was just that: each family having pizza on its own picnic blanket, with kids running around a field. There was no easy way to start a conversation with these random strangers on their individual islands. I suppose it was easier for families with typical kids - you're naturally thrown together when your kids gravitate to each other and start playing.

But Ryan wasn't making any attempt to engage with other children, and nobody was approaching him, either. I tried introducing myself to the one mom I saw sitting by herself, but she just wasn't that into me.

Stu and I stood on the periphery, looking for Our People. All the elementary-age kids there seemed typical.

Then Stu said, "How about that eleven-year-old boy with the headphones that aren't plugged into anything?"

Yup, he's One Of Ours.

We gravitated toward his family. I tried to figure out the secret handshake, a way of saying "I know we have something in common, but I don't want you to feel like your kids stands out, even though he totally does, but hey, so does mine, so let's hang out."

Eventually, the boy's father started blowing bubbles for a gaggle of shrieking kindergartners. I saw my opportunity. I complimented him on becoming the most popular parent around. We made small talk about what suckers kids are for bubbles. He jokingly asked when the band was coming on to relieve him. We re-imagined this event with free babysitting and an open bar.

We didn't actually discuss the thing I knew we had in common, but I felt comfortable talking to him because he's one of Our People.

And when I had to excuse myself because it looked like Ryan was having a meltdown on top of the parachute the other kids were trying to duck under, I knew he'd understand.

Wednesday, September 12, 2012

Too soon?

On Tuesday, Ryan came home with what I can only assume is a 9/11-themed craft.

It's a red and white striped construction paper thing with a blue pentagon in the middle, with an 11 in the middle of the pentagon. And he drew a few stars on it with a red crayon. And there's a piece of yarn on top so you can hang it - maybe it's a flag? 



All this begs the question, what was the lesson that went along with this craft? How do you teach second graders - six- and seven-year-olds with special needs - about terrorism? About non-state actors who attack civilians? About the possibility that their parents might not come home from work one night? About war and fear-mongering and heroism and bad politics?

Eleven years ago I was living in Queens and working in Manhattan. I still can't stand to look at photos from that day, because they make me smell that awful ashy smoke.

I stared at the wobbly-cut edges of the construction paper pentagon and wondered how this lesson was framed for my son. He is too young, too innocent, to understand any of the emotionally-charged lessons of our recent history.

Then I wondered, how did schools teach about Pearl Harbor around 1950? What do kids learn about Martin Luther King Jr. when they're working on those MLK Day coloring sheets?

I have no doubt it is important to teach about 9/11 in schools, but how, and at what age or level of development? I read a beautiful lesson plan written by the 4 Action Initiative. They recommend, "It is crucial to teach difficult topics in a way that doesn’t increase a child’s sense of vulnerability or helplessness," and then suggests highlighting the importance of proper evacuation procedures and emergency preparedness. They also suggest, "Start a conversation about how students can help through service projects and individual good deeds." The lesson plan itself starts with basic themes of diversity and being nice to people, then from this context builds up to historic events.

I asked Ryan to tell me about his craft; he said, "It got stars on it." I don't know what Ryan is learning, or what he's capable of understanding at this point, but I hope he learns more about diversity and good deeds than about anger and fear.

Monday, September 10, 2012

Getting there is Love

Behavior is communication, but it's incomplete communication.

Last last couple of years, when Ryan was regularly throwing fits almost every morning as I wrestled him to the school bus, I knew he was trying to communicate his dissatisfaction with something, but I didn't know what. Was he telling me he didn't like school? That he didn't want to interrupt whatever game he was playing? That he would miss me? That someone was hurting him?

Crying and going boneless express unhappiness, but not reasons.

I would twist my brain in knots trying to ask the Right Question that would prompt Ryan to reveal the Right Answer. But when a kid lacks the language to reliably answer yes/no questions, it's all but impossible to tease out the information you need to ease his misery.

This year, Ryan gets on the bus happily, without resistance and without looking back. I can even announce "Ryan, the bus is here" when he's not ready, and he'll come running to get his shoes and get out the door.

Of course I'm thrilled that he clearly likes his new school more than his old school - that whatever had been making him so miserable has been resolved.

But all I can think about now is how upset he was about school the last two years, and how totally useless I was to him. He tried to tell me...something...in the only way he knew how, and I didn't understand the message. I failed him. I tried my best to understand, and I failed. And I kept putting him on that bus, sending him to that school, not knowing if there was some monster he saw every day, not knowing what form that monster might take.

I don't blame myself for lack of trying: I tried as hard as I could to decipher Ryan's coded pleas for help. But I didn't understand what Ryan was trying to tell me, so I didn't know what to do for him.

And I fear that the next time Ryan hands me an indecipherable message, I'll be just as useless to him.

All I can do is try to interpret the behavior. As some wise, faceless person on the internet said, "empathy is understanding; getting there is love."

Wednesday, August 29, 2012

The Final Rinse

Washing a car is not like Seattle.

According to the school of PBS Kids' Curious George, there are six steps to properly washing your vehicle. Consolidating the process to a mere four (ie rinse, soap, rinse, dry) is not only un-freaking-acceptable, it might break a streetlight.

[A quick aside: after I typed that last sentence, my computer's spell check found my word usage un-freaking-acceptable. It made a few helpful suggestions for substitutions:

I find these options nu-freaking-acceptable. Moving on.]

I learned of the error of my ways while washing my car this evening. I invited Ryan to help me - he was quick to join because he loves playing with the garden hose, and there's an episode of Curious George that he likes to quote that involves George and his friend Allie building their own automated toy car wash (Episode #606 for those wishing to earn some extra credit).

Ryan responds well to the order imposed by numbered steps (step one: rinse the car; step two: scrub with soap...), but we have to be mindful that in his mind this organizing principle is absolute: if there are four steps, all steps must be executed in order, and no steps can be skipped, or things are Not Right. When something is Not Right, a meltdown is all but inevitable.

So we're washing the car, and Ryan is narrating the steps and supplying corresponding Curious George dialogue. Then the unspeakable happens: my order of operations varies from the one in his mind.

"Aaaagh! No!!! Do not DRY it! You can NOT DRY it!" Ryan screamed. I tried to talk him through some deep breathing, but this meltdown had escalated too quickly for typical methods. Ryan shrieked, cried, shook, blew chunks of snot all over himself, lost his ability to spray the hose when he wanted to. I prompted him to tell me what Step Four should be (obviously Drying was the wrong answer), but he just repeated "Don't DRY it!"

And that's when he threw himself into our small street lamp with such force that he broke off the electrical connection box.

Did I mention this whole time our next door neighbors were playing ball in their driveway? They did a great job of looking like they didn't notice anything amiss (Well, of COURSE that woman is wrestling her crazed son to the ground and sitting on him, that's just what normal folks DO.)

An autistic meltdown is not like a bratty child's tantrum. The emotion on display isn't disappointment or bitterness: it is anguish. It's an outpouring of fear, true terror that the world is falling apart and infinite frustration at your inability to effectively communicate that the world is about to end. It's a nightmare with your eyes wide open. It's a moment when things have gone so horribly wrong that you can't remember how to breathe.

When Ryan has a meltdown, my body goes into crisis management mode, but my heart just hurts for him. I stand by useless, watching the person I love most twisting in anguish. I claw blindly through my bag of tricks, searching for the one that will bring my baby some peace. I am relieved when Ryan gets distracted by a sticky spider web long enough to break the spell.

I never did find out the proper order of car-washing steps. 

Thursday, August 9, 2012

Update on the moving company

Thanks to us and others like us, Travel Van Lines is no longer accredited by the Better Business Bureau. It seems they were pulling this lost box scam on lots of customers - and most didn't get their stuff back without paying a bribe. Also, they were doing business under several names, so it was hard for people to background check them and know they were hiring a fraudulent company.

We have since determined another box of ours is missing, but I don't know if my diplomas are of enough value to us to deal with what it would take to get them back.

Buyer beware!

Wednesday, August 8, 2012

Respect, Dignity, Humanity

You've probably read this story over the last few days, about a young man being denied a heart transplant because he is autistic.

Remember the little girl who was denied a kidney transplant - a kidney to be donated by her own family - because she was "mentally retarded"?

Remember the doctor who administered a lethal dose of drugs to a brain-damaged young man in order to hasten the harvesting of his organs?

Oh, and then there's this ten-year-old who was denied a freaking HAIRCUT because of his autism.

How about this disgusting "demotivational" poster someone on the internet came up with?
Or how about insurance companies that won't cover ABA therapy, even though Medicaid recognizes it as an important treatment for autistic people?

There are too many examples of ways our society treats people with autism or mental disabilities as Other, as Less. Every person born into this world deserves to be treated with dignity. Every person born into this world deserves a chance to live a life that is meaningful to himself or herself.

The Torah teaches that all people are made in the image of God. I encourage you to check out this beautifully nuanced reading of Leviticus that sums up better than I can that "people with disabilities are not viewed by the Torah as broken or imperfect creatures, but rather as beings charged with living their lives with holiness"


And for what it's worth, visit Change.org and sign this petition to show support for Paul Corby. Maybe he'll get that transplant after all.

Wednesday, July 25, 2012

The Magic of Seattle

Shortly after Ryan's first birthday we took a family vacation to Seattle to coincide with a friend's wedding. That week, we noticed Ryan spontaneously doing age-appropriate things he had never done before: clapping, waving, giving high-fives, actually putting food in his own mouth. This was all pre-diagnosis, when we were blissfully ignorant about developmental delays and whatnot. We just thought, "Neat! A change of environment can do a person good."

Like many folks on the spectrum, Ryan tends to form rigid behavioral patterns, but the behaviors tend to be associated with physical spaces, so taking him out of his usual environment sometimes jolts him out of those routines. So as much as I feared moving would stir up all sorts of problematic behavior, the move has actually shaken up Ryan's routine in a good way.

The last year we lived in our apartment, Ryan's favorite pastime was hiding his toys, then forgetting where everything was hidden - an activity Stu and I called Stupid Ball™. Since moving three weeks ago, we haven't played Stupid Ball™ at all.

For the last several months we lived in our apartment, Ryan's favorite toys to play Stupid Ball™ with were the plastic fish from one of those Let's Go Fishing games. Sometimes he would hide all 21 fish, but more often he would select one of each of five colors and camouflage them - blue fish in Blue Blanket etc. Since the move, only three of the fish have come into play, and nobody has been hidden.


Of course, with the new house he is developing some new routines. Our first week in the house, the balls on the pool table had to be arranged numerically at all times. Last week was all about hurling household objects into the pool and arranging Christmas decorations in the basement by the light of a flashlight. The major players this week have been six tiny rubber monsters.

Force Ryan out of his usual environment and he can really surprise you.

Sunday, July 15, 2012

Just Checking; and a Scathing Review

"Can we go back home to the old house?"

Ryan asks this every few days.

But not like he's actually asking to go back to our apartment.

It's more like when he asks if he can watch Dragon Tales, when I know that he knows it's been off the air for three years. He's just checking in to make sure he's right - to confirm nothing has changed.

His voice stays very calm while he's asking, he actually waits for me to answer him (that in itself is a big deal), and when I reply that the apartment is empty and all our stuff is at the new house, he goes about his business.

I'm beyond impressed by how maturely he has been processing this move. He still refers to where we live now as "the new house" and not "home," but hey, so do I.
----------


On the subject of moving, I feel the need to warn any readers in the greater New York area about the horrible moving company we had the misfortune of using. Travel Van Lines, which also does business as Certified Van Lines, comes off as really professional and experienced over the phone, but on the job, they're incompetent at best, criminal at worst.

We chose them based on their low estimate and the customer service rep's statement that all their movers had been working for them for years. The job wound up costing DOUBLE the estimate, and one of the three workers was in his first week on the job.

The woman we spoke with estimated this would be a four-hour job. After the guys had been loading the truck for a solid six hours, we asked them to stop packing the truck and start driving; it took 4 packed carloads and a borrowed pickup truck to haul what they didn't get around to.

The movers managed to break three pieces of furniture, including a nightstand made of solid oak.
Seriously, our bedroom set is our only set of non-Ikea furniture, and they managed to break off the whole corner.


The real pain in the ass, however, is that they somehow forgot to unload one box. A really big box - like, over three feet high. A box that contains all of Stu's work clothes, the charger for his electric razor, and the spare key for his car. A box worth about $1,000 to us.

I called them as soon as we realized we didn't have the box. I left messages for days. Someone eventually confirmed our box was at their warehouse in New Jersey. I was assured they would deliver it right away, tomorrow, as soon as we have a truck in the area, Saturday morning. It's been two weeks, and Stu still has no clothes. The guy we yelled at today insists they will put the box on a truck that's headed up to Rhode Island in the morning, but I'll believe it when I see it.

I have already submitted a complaint to the BBB, filed a report with the local police, and written some nasty online reviews, but until Stu has a second pair of pants in his closet, I'm going to continue to spread the word about these jerks.
----
UPDATE: It's Monday morning, and a truck just delivered the box. At least, I think it's a box.
Poor thing.

Sunday, July 8, 2012

Welcome to Suburbia

"You seem very well. Things look peaceful.
I'm not quite as well, I thought you should know."
- Alannis Morrisette, "You Oughta Know"

Our new house is beautiful, like out of a decorator's magazine. It's the epitome of suburbia, complete with a white picket fence.

Ryan has handled his first week in the new house remarkably well. He loves splashing in the pool and rolling balls around the pool table and spraying the hose at the driveway. He sleeps perfectly, and has only asked to go to the old house a handful of times.

It probably helps him that he hasn't seen another child since we moved in.

But this does not help me.

At all.

I have been spiraling down into a depression the likes of which I haven't seen in a couple of years. I've spent much of the last week crying. I don't know anyone, and it's been so hot out that none of the neighbors are spending any time outside, so I've barely even seen anyone.

Intellectually I know that eventually things will improve - when Ryan starts school tomorrow I'll start to have basic human interaction; when the local derby league figures out when I can start with them I'll meet like-minded girls, maybe even make a friend; whenever I find a job to pay the expenses that go along with the apartment we still haven't been able to sell, I might have co-workers.

But for now, I just feel trapped in someone else's dream home, someone else's dream.


Thursday, June 14, 2012

This is how we memorize dinosaurs from A to Z

From the DSM IV diagnostic criteria for Autistic Disorder:

...restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
      1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      2. apparently inflexible adherence to specific, nonfunctional routines or rituals

Kids with autism often have quirky special interests - trains, train schedules, garage doors. They may be so obsessed with their favorite topic they can barely imagine playing with or talking about anything else.

Ryan's main fascination is the alphabet.

He has loved letters for as long as we can remember, and was able to recite the entire alphabet in order months before his second birthday. At the time I thought he was just really advanced.

Letters are such an integral part of Ryan's life, it somehow never occurred to me to write about his love of them. Writing this post kind of feels like I'm pointing out, "Hey, did you know my kid has ten fingers?" But I guess not really like that at all.

His favorite toys include a box full of letters (made of felt, foam stickers, magnets); Dr. Seuss's Super Stretchy ABC Game; and two sets of Word World-themed Legos.

If he's thirsty, he's likely to request juice by asking, "What's something starts with J?"

And he enjoys lining up sets of 26 objects (mostly animals, but, you know, whatever works), one for each letter.

So you can not even imagine how excited Ryan got when Dinosaur Train aired a two-part episode dedicated to assembling all the species from the Dinosaurs A to Z song.


As you might imagine, he watched it several times.

Then he assembled representations of all 26 species. Surprisingly, we don't own a toy einiosaurus or a xenotarsosaurus, so many dinosaurs are represented by other animals that start with that letter; instead of a quantasaurus, we've subbed in a knight I named Quincy. The one exception to the alphabetical rule is the X-Y-Z dinosaurs are represented by creatures of dramatically increasing size (I can't link to the exact video, but if you click here and scroll down to "All the Dinosaurs Sing Dinosaurs A to Z!" you'll see why).

So, next he requested the song to play on a continuous loop on my iPod while all the assembled animals sang along and performed the same choreography as in the tv show.

And this has been going on almost nonstop for the last two weeks.

Tonight at what Stu and I thought would be bedtime, Ryan kicked it up a notch with a painfully-thorough reenactment of the entire two-part extravaganza, including the big dance break; it took over an hour.

Mommy needs something that starts with W...

Wednesday, June 6, 2012

The worst part of all.

I have a lot of fears about how Ryan will react to this upcoming move. I assume we're going to see lots of tantrums, uncontrollable behaviors we have not seen in months, extra laundry - stuff that even typical kids might work through during a major transition.

But what will we do without Chrissy?

Ryan's first time touching Play Doh without crying, courtesy of Chrissy.
Chrissy has been in Ryan's life for nearly four years- since the first week he had an IEP.* She's like a member of the family. Ryan adores her and trusts her and loves their time together. Chrissy knows exactly how far Ryan will tolerate being pushed, and then she manages to push him juuuust a little bit farther. Chrissy Time is as close to sacred as anything in our house.

Sure, there are other SEITs** closer to our new home, but they're not Chrissy. And yeah, we could drive an hour and meet up with Chrissy every once in a while if her schedule can accommodate it, but not every week.

Moving will bring many changes, but none as hard as this one.

Hey Chrissy, the new house has an awesome guest room...


* IEP = Individualized Educational Program - the all-important document that establishes what Special Ed services a child will receive.

**SEIT = Special Education Itinerant Teacher - a special ed tutor who helps a child generalize the skills he learns at school and apply them to the rest of his life.

Monday, June 4, 2012

This weekend's installment of the end of the world was brought to you by my new bed.


We needed to replace our mattress, so we took advantage of a big Memorial Day weekend sale and ordered one of those Sleep Number beds - the glorified air mattresses designed for couples like us who can't agree on anything. The salesman told us it would arrive in "a few weeks" in "a few boxes" and would be easy to assemble.

I was quite surprised when one week later, I came home to seven enormous boxes piled up outside my door.

My apartment was already full of boxes - some packed, some waiting to be packed - because we will finally be moving to Connecticut at the end of the month. No, we have not sold our apartment yet. (We had a cash buyer lined up, stupid co-op board rejected them, seething rage, moving on...).

So while our original plan had been to move the factory-sealed bed boxes to the new house and leave our old bed at the curb, in the interest of saving space we decided to assemble the new bed on Saturday.

Ryan helped us move the box spring down to the garbage area by "guiding" us down the hall, and he watched us take the old mattress away.

Two hours later, Ryan started freaking out.

"Where is the pillow?" he shrieked in panic. He meant the mattress - he can never remember that word.

"Remember, we took the mattress down to the garbage area," I said. "We got a new bed."

"We need the pillow! Can we see it? We got to go see it!"

Um, ok. We went down to the basement to visit the old mattress in the trash room. I brought a camera so Ryan could take pictures of the old mattress and box spring.
This seemed to satisfy him.

Half an hour later, the panic attack resumed.

"Where is the pillow? Is it still in the trash? We got to bring it back up!"

I showed Ryan the picture he had taken; this didn't help. It actually seemed to make things worse.

"Aaagh, we got to get the mattress and bring it back up!"

"Where would we put it?" Stu asked.

"We got to bring it up!" Ryan non-answered.

There were tears and self-injury and racing heartbeats. We tried showing him our new bed, but the sight of it just upset him more. There was no reasoning with him.

Out of other options, I pinned Ryan to his bed and sang to him until he relaxed enough to put on his jammies.

He asked about the whereabouts of the old mattress a few more times on Sunday.

And this morning.

I imagine this is just the beginning of what will be a long period of adjustment concerning moving. We have shown Ryan the house we will move to, have discussed that the three of us and all our things will move to the new house, have taken him to a park near the new house so he can see that the geese there are as easy to chase into the water as the geese here. But moving is hard for any kid, and probably that much harder for a kid like Ryan who lacks the language to express his fears in a more sophisticated way than punching himself in the head and begging to fish an old mattress out of the trash.

It's hard for me to think about. I've always lived in the greater NYC metro area, so picking up and moving to a far more suburban area, further from my family and friends, is stressful. I've gotten very comfortable where I am, and all the unknowns ahead are a bit scary. And the co-op board springing this new obstacle on us last week certainly didn't help.


For those of you who have moved with kids, what books would you recommend I read with him to help prepare him for the big day?


Friday, May 25, 2012

I'm Sexy and I Know It


Dear School District Mucky-Mucks:

I appreciate the [City] School District’s effort to offer our Special Education students an opportunity to enjoy a field day. However, as a parent chaperone at the Very Special Olympics at [School], I was distressed by how inappropriate the event seemed to be for many of our young children with special needs.

My son is a first grader with autism. He and all of his classmates experience challenges with sensory integration. For many of these kids, loud sounds can cause them physical pain and can trigger behavioral meltdowns. So I was surprised by the oppressive volume of the sound system. Several teachers told me they had asked the DJ to turn down the music for the kids’ sake, but all their requests were ignored. I also mentioned this to one of the coordinators of the event (I didn’t catch his name) but the music stayed loud enough to make children in my son’s class upset.

While I’m on the subject of music… I’m not at all prudish (I play roller derby and curse like a sailor), but I felt it was incredibly inappropriate to have six-year-olds dancing to “I’m Sexy And I Know It” and the like. Kids with autism often learn language through echolalia; I don’t think they need to repeat the lyrics “marijuana marijuana marijuana marijuana.”

My son does not use a wheelchair, but it was hard not to notice how much trouble the adults had pushing their students’ wheelchairs around the grass. It didn’t help that they had to manhandle the chairs up a curb to get on to the grass in the first place. It seemed like the very least accommodation that could have been made for an event for kids with special needs would have been a small ramp.

Finally, the kids were crowded under a low concrete overhang for lunch. The reverberations of the children’s voices sent several kids in my child’s group into sensory overload. When my son came home from school that afternoon, he was a wreck. He doesn’t have the language to be able to tell me what had upset him, so I was grateful I had witnessed the sensory onslaught he had experienced that morning so I could interpret his distressed behavior.

In short, if you’re going to hold an event for children with special needs, please consider their special needs when planning the event.

Thank you,
[Me]