Friday, July 29, 2011

Goose-Geese

Like most little boys, Ryan loves to chase geese. Unlike most little boys, Ryan chases geese with a clear goal.


The goal is to drive the geese into the water. The plan of attack is to separate the flock, picking off a couple of birds at a time to shepherd into the pond, then circling back for another pass, and another. He is very efficient at goose herding.

The other day, Ryan insisted on finding some geese to chase. "We got to chase the goose-geese!" We went to a park with a large pond where you can always find a flock of no fewer than 100 geese, and Ryan got down to business. When he had successfully herded all the geese into the water, rather than celebrating his success, he got pissed off that there were no more birds to chase.

He ordered the geese to come out of the water; they ignored him. Then he asked me to get the goose-geese back on land. I told him I have no control over birds, and that I can't make a goose do something it doesn't want to do; this was unsatisfactory.

There were also a few ducks in the water, including cute little ducklings, in which Ryan had zero interest. Ryan decided that the geese should be on this side of the water and the ducks should be on that side. He told them the plan, but they just swam wherever they wanted.

Boyfriend was getting genuinely frustrated and mad at the disobedient birds. I suggested that the geese might be scared of him, since all their encounters involve him chasing them, and that maybe we should hang back and ignore them for a while so they wouldn't be scared anymore. Amazingly, this worked. As soon as the geese sensed Ryan was not about to chase them, they emerged from the water.

Then he chased them right back in.

And then he got mad that the geese were in the water...

Tuesday, July 19, 2011

How to explain autism to a young child

The best geared-for-kids explanation about autism I've ever read comes from the blog of Mom-NOS. She describes a world in which neurotypical brains are toasters, and autistic brains are hair dryers. In this world, the toaster-brained people have decided that the most important thing one can do is to make toast; those with hair dryer brains can try to make toast, but it will take a long time, and the toast will always look wrong. But there are some things a hair dryer can do far better than a toaster... It's a brilliant analogy - take a minute to read it in her words. I promise you it's worth it.

But if you don't want to launch into a whole long analogy-based story, here are some talking points for teaching a typically-developing child about his friend with autism:

- ____ has autism. That means his brain is wired a little differently than yours.

- There are some things that are harder for him, like talking, playing with other kids, or changing his routine. He's still smart, and he's still a good kid, he just needs a little extra help with those things.

- There are some things that are easier for him, like memorizing stories or hearing/seeing etc.

- Autism is something you're born with. You can't catch it.

- In most ways, we are all the same. We're all human, we all have feelings, we all love the people in our lives, we like to play with sand, we like eating ice cream...


- But every one of us is unique. Be proud of the ways in which you are different from everyone else in the world, and respect others' differences.

- To be a better friend to a kid with autism, be patient. Use fewer words when you speak, and give him extra time to answer you. Accept him the way he is. And try not to take it personally if he doesn't want to play the way you want him to.

Monday, July 18, 2011

You have to say something.

Ryan was playing with his cousins at a big extended-family hoohah at my parents' house this weekend. Miller is 4, Ryan is 5, Dylan is 6. They went to the park together, played in the sprinkler, suckered us into a trip to the ice cream truck. A good day.

The boys spent a solid hour playing with a bucket of Moon Sand. I don't know what this crap is made of, but it somehow maintains the perfect level of moisture for building - we've had this bucket for a couple of years, and the sand never dries out. I'm sure it's somehow lethal.

Ryan, Miller, and Dylan redecorate the patio.

At one point during this hour, Stu and I were supervising. Dylan was using a medicine cup to make inch-high sandcastles. He announced that he was building a row of 10 of them. Ryan didn't get the memo, and he reached over, took one of the little castles, and crumbled it. Dylan got understandably annoyed.

"Ryan, stop it!"

I told Ryan to leave Dylan's castles alone. Stu tried to reassure Dylan that there was plenty of sand for everyone.

Ryan broke another castle. And another. I told Ryan to keep his hands to himself.

"Ryan broke my sand!" Dylan complained to Stu and me.
 
Despite our efforts, Ryan couldn't grasp the concept of "my sand" vs. "your sand." Dylan got understandably pissed off.

"You can't just break other people's things, Ryan!" he shouted.

"You're being mean," Miller said to Ryan, rallying to Dylan's defense.

"He's bad," Dylan told Miller. "Let's just ignore him.  Let's not even talk to him."

All three boys continued playing with sand.

Stu whispered to me, "You have to say something," but I didn't know what to say, or who he thought I needed to say something to. 

Dylan and Miller were being perfectly age-appropriate, but Ryan was unable to follow the accepted rules for how to play with sand, and they called him out on it. They were right: you can't just knock down other kids' sand castles; we've had this conversation before. Ryan didn't understand that he had done anything wrong, but I couldn't handle hearing NT kids call my kid "mean" and "bad" because of it, or saying "let's not even talk to him."

So I told Ryan to play with his own sand and leave other kids' castles alone.

Exasperated, Miller ranted at Ryan, "She doesn't need to tell you that 100 times!"

At this point, if I had been thinking rationally, I would have told Miller to mind his business. But I was choking back tears at this point. I sat on the patio near Ryan so I could intervene if he reached for Dylan's sand again.

After a few minutes, Dylan stared at me and asked me, "Why are you still here?"

It was just too much for me to explain why I was still on the patio. That yes, Ryan does need to be told things 100 times. That Ryan's not trying to be mean or bad, but he doesn't yet know how to play with other kids appropriately.

I made a hasty, tearful exit from the party.

When I later explained to my cousins what had made me so upset, Miller and Dylan's mothers said they were going to talk to the boys and try to teach them about autism. Miller's mom wrote to me, "I welcome your guidance on how to best get Miller to understand there are differences between him and Ryan. It's really new territory for me."

I was thrilled to hear this - these are truly the words every ASD parent wants to hear. And these boys are stuck with each other for life, so this conversation had to happen at some point. I've asked my cousins to consider writing a follow-up guest about how those conversations go. (No pressure, ladies.)

So, how can a parent explain autism to her young child? To be continued...

Wednesday, July 13, 2011

Praying for the Parents, Preparing for the Worst

In local news, a nine-year-old boy in Brooklyn had asked to walk home from day camp for the first time, and his mother was waiting for him seven blocks from camp. Somewhere on those seven blocks, he was abducted. Police and the entire Hasidic community of Borough Park spent two days searching for him.

Today, his dismembered remains were found. If you want the gruesome details, read this article - it's too upsetting for me to repeat.

My thoughts, of course, are with little Leiby Kletzky's family. I can't imagine how one goes on with her life after such a tragedy.

The media are reporting that the Leiby had autism. This makes me wonder if autism made him more susceptible to abduction. Was he less able than a typical child to sense that the assailant he encountered was dangerous because of his social deficits? Was he more trusting? Did he get distracted on his way home?

Kids with autism are prone to wandering off (they call this "elopement" but it's not very romantic) and often have a limited sense of danger, so abduction is a very real concern. There are special techniques to teach ASD children how to handle stranger danger, but I'm not sure who offers this training.

Here are some resources worth looking into to protect your ASD child:

- About.com's tips to reduce the danger to your child.
- ID jewelery (though I can't imagine my kid actually keeping an ID bracelet on.)
- Personal tracking devices: see eSpecialNeeds, Amber Alert GPS, or Care Trak.
- Project Lifesaver's tracking system and training for first responders

Tuesday, July 12, 2011

Please, No More Acronyms

It started with the drain.

A couple of weeks ago, Ryan became obsessed with yanking the drain stopper out of the bathroom sink. We kept telling him to leave the drain alone, but that made him all the more insistent that the stopper had to come out.

Then, Ryan started closing the drain tightly before washing his hands. He would let the sink fill with soapy water while he washed, and then walk away from the full sink without allowing the water to drain out.

Last week, while doing things that had nothing to do with the bathroom (as far as I could tell), Ryan started a new weird behavior: he would dash out of the room, run to the bathroom, slam the toilet lid closed, and run back to finish whatever he had been doing. Sometimes he would order Stu or me to stop whatever we were doing and open the toilet so he could close it.

These orders and behaviors later extended to both our bathrooms. As it stands now, at seemingly-random times, Ryan will get agitated and insist that both toilets, both sink drains, and both bathroom doors must be closed. And at other times, he won't care at all about these things - if he's actually using the bathroom, it's just as likely that when he's done he'll leave the toilet and door open (but the drain still stays shut).

And over the last couple of days, Ryan has started throwing things into the toilet before slamming the lid - a plastic box of wet wipes, his own foot...

So I've started reading up on pediatric obsessive-compulsive disorder. It seems that OCD and ASDs are often comorbid. One interesting note, according to Dr. James Copland: "People with OCD usually feel uncomfortable with their symptoms, and would like to be rid of them, whereas people with ASD usually are not bothered by their obsessions, and in fact may embrace them."

The treatment options are behavior therapy (which Ryan already gets at school), and/or SSRIs. Oh, the irony - fetal exposure to SSRIs may cause a need for later use of SSRIs... I guess this makes sense: if a fetus is discouraged from developing a normal way of shuttling seratonin around the brain, it will develop into a child that can not deal with seratonin normally.

I really, really hope Ryan isn't displaying symptoms of OCD. I don't need any more alphabet soup in this house.

Monday, July 11, 2011

An ASD Mother's Wish

I wish I could crawl around inside your head
so I could finally understand.

I wish you could remember to use the words you know
and that we've drilled you on
time
after time
after freaking time.

I wish the world wasn't so painful for you.

I wish you could make a friend
a real friend
your own age.

I wish you could tell me about your day.

I wish everyone you'll ever meet
will see you as I see you,
as a compassionate
loving
sweet
generous
beautiful boy.

Tuesday, July 5, 2011

Prenatal Antidepressants and Autism

When I'm working around the house, I'll often have crappy daytime tv on for background noise. The ads assume anyone home during the day is unemployed and/or disabled: train to be an ultrasound technician, get cash for your structured settlement, sign up for a Medicare Advantage plan, call a personal injury attorney.
I've falen...and I can't get up!

 Lately, they've started playing ads that speak to me: call a lawyer if you took antidepressants during pregnancy and your child suffered birth defects. These ads, and the spam that fills my inbox, say taking Zoloft has been linked to heart defects, persistent pulmonary hypertension of the newborn, neural tube defect, craniosynostosis, clubfoot, cleft palate, limb defects, and anal atresia.

Autism is not one of the conditions in the ads, but I have always wondered what effect my taking antidepressants during pregnancy had on Ryan's development.

When I was pregnant, my doctor told me the general medical consensus was that the benefit of treating the mother's depression outweighed any known risks of fetal exposure to SSRIs.

Over the last five years, several studies have pointed to a possible connection between the use of SSRIs in pregnancy and the development of autism. The most recent, and most damning, came this week in the Archives of General Psychology. That study suggested that use of SSRIs during pregnancy - especially during the first trimester - can double or even triple the chances a baby will be diagnosed with an autism spectrum disorder. And it further noted that "No increase in risk was found for mothers with a history of mental health treatment in the absence of prenatal exposure to selective serotonin reuptake inhibitors," meaning it's likely that the problem lies in the drugs, not in the underlying condition that may or may not lead to the use of drugs.

That said, the vast majority of children with autism were not exposed to SSRIs in utero, and the vast majority of children exposed to SSRIs in utero do not go on to develop autism. There's a complicated mix of genetic and environmental factors at play here, and I look forward to the follow-up studies.

I believe I made the right decision to continue to treat my depression during my pregnancy. According to the American Pregnancy Association,
Depression that is not treated can have potential dangerous risks to the mother and baby. Untreated depression can lead to poor nutrition, drinking, smoking, and suicidal behavior, which can then cause premature birth, low birth weight, and developmental problems. A woman who is depressed often does not have the strength or desire to adequately care for herself or her developing baby. Babies born to mothers who are depressed may also be less active, show less attention and are more irritable and agitated than babies born to moms who are not depressed. This is why getting the right help is so important for both mom and baby.
Great risks, indeed.

I must keep reminding myself of those risks so I don't fall into the tempting spiral of self-blame for my child's challenges.

Friday, July 1, 2011

Everyone's fine. Now I'll tell you what happened.

After two hours of intense negotiation about which animals could join us, Ryan and I went to the pool. This is a fancy-shmancy public pool with a lazy river, in the middle of a 161-acre park, filled with trails, ball fields, lakes, and woodlands.

We spent three hours at the pool, doing typical pool things. Then we headed for the playground just outside the pool's gates. Ryan started to run up a big grassy hill. I said, "Before you run off, let me grab my bag - don't go too far." I got my bag, and when I turned around, Ryan was gone.

At first I wasn't too concerned - this is hardly the first time Ryan has run off. I looked around for him, calling his name.

After maybe 15 minutes, I started to panic.

Five minutes later, I called 911.

A team of county police immediately arrived on bicycles and fanned out in search of Ryan. I walked around with an officer and screamed Ryan's name.

About ten minutes later, one of them radioed that they had found Ryan. They would be bringing him back to the playground.

I paced, waiting for them. "I'm going to kill him," I muttered to the cop who had been babysitting me.

"Please don't kill him in the park," he advised. "Wait til you get home."

Ten long minutes later, Ryan arrived, riding shotgun in a golf cart. They had found him over a mile away from the playground, near the Bronx border.

"He's pretty fast," commented one of the officers who had found him.

Ryan was smiling, oblivious to my anger, indifferent when I tried to explain to him why he can't just run off without me. I yelled at him in that same unsatisfying way I did when he ran into the street by himself - having no reason to believe my point had gotten through to him.

Both my mother and my mother-in-law suggested a stiff drink was in order. Who am I to question their advice?