Sunday, April 24, 2011

Spud

My in-laws have a big backyard that runs seamlessly into the next yard and the next. When playing behind their house, Ryan likes to run the length of this mega-yard; the neighbors don't mind. Today, the neighbors were having a family party, and there were about ten kids playing together.

At first Ryan ran past them and lurked behind a tree, but then one of the girls asked Ryan if he'd like to play with him. He beamed.

"Do you know how to play Spud?" Ryan made no attempt at answering.

The kids explained the rules to him, and then, sensing he didn't really get it, they assigned him a partner to shadow until he got the hang of the game. A tween boy in braces held Ryan's hand and told him when to run (and occasionally hid behind Ryan to avoid being hit with the ball). The kids truly embraced Ryan. They were patient and made him feel included.

One girl wandered into the house and returned with a cookie. My mother-in-law quietly asked her to please not share with Ryan, as he is allergic and the cookie could make him sick. The girl shared this directive with her big sister (who was probably around nine). Then, unprompted, both girls disappeared into the house, and when the returned, they announced they had just washed their hands, for Ryan's benefit.

Wow.

Then, before introducing Ryan to their puppy, they asked if Ryan was allergic to dogs.

Wow.

Someone has trained these children very well.

Ryan played with these kids for a solid 15 minutes. I can't say he ever really "got" the game, but he had a wonderful time playing, and the other kids intuitively understood the parameters of his abilities and manipulated the game so he could participate.

Happy Easter.

Friday, April 22, 2011

Declaration of Independence, part 2

First catch up on Part 1.

One of the benefits of still living in this apartment is we can walk to the train station in about two minutes. This provides major entertainment value for a little boy. We go to the station to watch the trains - we used to do this with far greater frequency than we do now, but it's still a beloved pastime. Ryan loves the loud rumbling of the trains and the big whoosh when they rush past. Evening rush hour is the best time to visit the train station - you get the most trains per minute.

The other night Ryan was quite insistent that watching the trains was not enough, and instead he wanted to get on a train. I told him we were just there to watch, and maybe we could ride the train to the zoo tomorrow. Having no sense of time, he decided it was time to ride to the zoo right that minute, and he was having none of my the-zoo-is-closed-now crap.

"George couldn't wait to get on the train!" he quoted in anguish. (Ryan was unimpressed when I pointed out that when Curious George got on the subway without the Man in the Yellow Hat, he got lost and chaos ensued.)

Predictably, there was a tantrum. I was unimpressed. I called Stu to see if he was home from work yet (he was) and reported that as soon as the tantrum was over, we'd be heading home as well.

As soon as I hung up the phone, Ryan decided he needed to assert his independence from me. At the train station. During evening rush hour.

"Ryan got to ride the train, you go that way, Mommy."

I said no. In no uncertain terms, no.


This led to an epic meltdown which, for the first time I can remember, I was completely unable to control.

There were the predictable theatrics - throwing himself on the ground, screaming, crying, rivers of snot - but magnified beyond anything I was prepared to handle on a train platform. If this meltdown had happened at home, I could have pinned him down or covered him with a blanket and left him alone until he calmed down. But inches from train tracks, these are not options.

I knew I had to restrain him, because his impulse during meltdowns is to flail until he achieves self-injury. When I tried to pick him up, he flailed his skull into my nose hard enough that I felt compelled to check for blood.

We wrestled for several minutes. My first goal was to get him to the end of the platform, down the stairs to the parking lot. I would then have to get him across the parking lot, across the street, and across the other parking lot before we would get to a sidewalk where I could feel comfortable letting him thrash around without imminent danger of death.

I came to the humbling realization that I could not handle the situation on my own. I had to admit that I needed help.

I called Stu and told him to get his ass down to the train station, stat.

While Stu made his way to meet us, I somehow managed to get Ryan to that relatively-safe sidewalk; I don't really remember how that happened. When Stu arrived, armed with tissues and an amazing sense of calm, I walked away and cried.

I know things will get easier, because things are easier now than they were a year ago. But keeping both of us alive that evening was not easy.

And Ryan was really happy the next morning when he actually got to ride the train (and the bus!) to the zoo.

Thursday, April 21, 2011

Declaration of Independence, part 1

I've heard that typical two-year-olds like to assert their independence by trying to do things for themselves. We still haven't seen the I'll-DO-IT-myself stage - if it were up to Ryan, he would never use his hands again - but we have just entered an I'll-GO-THERE-myself phase.

It took me a while to figure this out, but when Ryan points in two directions at once, it means "You go that way, I'll go this way." He has started giving me verbal instructions to that effect as well. "Mommy, you in the elevator, I go down the stairs. BYE!"

I try to encourage the impulse when it's practical (safe), because I want him to feel grown-up and proud of himself. I'm mostly pretty ok with this around our building. Our neighbors all know Ryan well enough to know which adults he needs to end up with eventually, and Ryan sings to himself loudly enough that I can hear where in the stairwell he is.

I also let him do this on the sidewalks between apartment buildings in our neighborhood. I'll pretend to go "that way," but I'll actually hide pretty near him where I can see Ryan but he can't see me.

I'm trying not to be too nervous about it.

As long as we're in a safe, reasonably-controlled environment.

Yeah, you already know where Part 2 is going...

Monday, April 11, 2011

Roller Derby and Special Needs Parenting

Of Suburbia's 40 or so active league members, 10 have kids; of those, 3 of us have kids with special needs. One skater has two sons with Asperger's. The other has a son with ADHD and a daughter with an as-yet-undiagnosed mental disorder, as well as a typically-developing child. I don't know if this is a high proportion or if it falls within the range of statistical probability that 30% of parents in our league would have special needs kids, but it got me wondering about other moms out there in similar positions.

I posted a message to a derby chat board, and instantly got a flood of responses from derby girls around the world who are raising children with special needs, or are special ed teachers, or are themselves on the spectrum. So many different stories, such a wide range of disabilities they're all living with - autism, dwarfism, Down Syndrome, deafness. I also got plenty of messages from parents of typical kids, saying that roller derby is the antidote for their parenting stress as well. About half the women I emailed with said they had started playing before their children were diagnosed with disabilities, and half started in reaction to an official diagnosis.

I thought I'd be able to weave their stories together coherently to prove... something... but really, the only common thread is they all love playing roller derby, and find support from their derby sisters and catharsis from the act of beating up their friends.

Instead I'll just share the story of a couple of remarkable women.

My teammate, Satan's Cheerleader, has been skating for a couple of years. Her decision to try out for the team involved this thought process: "OMG! A way out of the house! Three times a week! Other MOMS too, that want to talk about something besides bowel movements, the latest gluten-free products, and trips to the pediatrician! I will sell my soul to get in!"

I completely identify with her feelings about being part of Suburbia:
I was excited that there were other moms at derby, including some that didn't suffer from perpetual MommyTalk. They could complete entire sentences that didn't include kids! I won't lie, I was actually a little excited when I found out that others had kids with special needs too. They don't glare at me when my 12 year-old rolls around the filthy PAL floor having a temper tantrum that I can't tend to at the moment because my 10 year-old klepto just disappeared into the parking lot and is trying to break into the armory next door.
And, she adds, her participation in derby has created a community for her children. They hang out with the other derby brats and take on their own derby identities - Satan's kids (collectively known as the Spawn of Satan) are Wring Pop, Sticky Fingers, and Pain in the Ace. I truly look forward to when Ryan (aka Captain Awesome) is ready to play with the Spawn of Satan, the Whiskey Shots, the Wayward Boys, and the Sane Asylum. So far, it's been hard to get him to stay at a game or practice for more than five minutes without a meltdown, and at the last parade we marched in, he was far more interested in his balloons than in interacting with the other kids. But it's nice to know there's a community waiting to welcome him.


Long Island Rollita (I love the name!) has four children - both biological and adopted - and a grandchild, all with multiple disorders. Her home life is complicated enough that she broke it down for me in a handy chart. For the sake of brevity, I'll just say these kids and grandson range in age from 2 to 25, and their diagnoses include Asperger's, Bi-Polar, ADHD, Fetal Alcohol Effects, Reactive Attachment Disorder, Learning Disabilities, Anxiety, OCD, Depression, and Schizo-Affective Disorder.

Rollita's reason for starting skating was similar to my own. She says, "I joined Derby because I really wanted something that was mine...completely separate from my daily chaos.  I have never had an outlet like this before and it has been life changing for me." Oh, I hear that! Because of the positive effect playing derby has had on her life, her husband has been very supportive. "If I start to feel the pressure to let it go because of the kids," she says, "he tells me I can't give it up, I need it too much."

I'll let Rollita take it from here:
Sometimes my family feels neglected because I am off doing something for Derby...especially my older kids.  Everyone is used to mom always being around and now I suddenly have places to be that don't always include them.  It's been a struggle, but they are adjusting. 

I try to include them as much as possible. When they do come, I often feel like I am on eggshells and have to watch every little detail and try to prevent/avoid the usual triggers, especially with my 9 yr old son [severe anxiety, OCD, ADD, learning disability, and being monitored by a child psychiatrist for mild Asperger's Syndrome].  For example, at our Christmas Bout, he had a full blown anxiety attack when he saw Santa....for whatever reason, that triggered his panic button...fortunately, my mom was there and just had my son hide behind her while Santa walked by....  without her there, I would've been torn between derby and being a mom...so I always try to plan for back-up support at times that I know my team really needs me because I clearly wouldn't think twice about putting my kids first...I'm sure the other skaters don't have to worry as much about these types of details.

My life is, obviously, much simpler than Rollita's, but I completely identify with her need to have something in her life that is all her own, independent of parenting and disability. I admire her, and all the other amazing women who emailed me, for carving out a little corner of her world where she can recharge and refocus herself so that in her "real" life she can be the best advocate she can be for her family.


We are not alone. Raising a child with special needs can feel very isolating - feeling like your daily experience is completely alien to your friends' lives, not identifying with any of those parenting magazine articles and milestone charts, avoiding play dates because they're just more trouble than you can handle. But there are thousands of us. And apparently quite a few of us have found release in roller derby.

I hope to see you ladies on the track someday!

And thanks to all who responded. Please check out their teams and support your local league!
Bay Area Derby Girls
Bellingham Roller Betties
Charlottesville Derby Dames
Central New York Roller Derby
Dead Girl Derby Kansas City 
Dutchland Derby Rollers 
Gold Coast Roller Grrls
Iron Mountain Roller Girls
Oly Rollers
Suburbia Roller Derby
Whidbey Island Roller Girls
Winnipeg Roller Derby League

Monday, April 4, 2011

World Autism Awareness Day...Again

I'm kind of ambivalent about Awareness gestures. On one hand, I want everyone in the world to understand how autism manifests and, how it affects families, and to behave empathetically toward children and adults on the spectrum. On the other hand, I don't understand how screwing in blue light bulbs is supposed to make any of that happen.

This past Saturday was World Autism Awareness Day, and the month of April is Autism Awareness Month. This means there will be more media attention devoted to autism-related issues over the next few weeks, and that presents an opportunity to do more than just slap some pictures of puzzle pieces on walls and repeat those oft-cited 1-in-110 stats. Maybe we have a slightly-greater chance of getting the stories we tell (and experience) every day into the hands of people whose minds are open enough to absorb them.

Looking at a building lit blue does not teach anyone anything except that "there is a thing called autism," and it only teaches that if someone has the personal curiosity to question why the building was illuminated blue in the first place. I'd rather see members of the ASD community devote their energies to true advocacy, talking openly about the beauty and challenges that come along with life on the spectrum.

In the spirit of Awareness, I'm going to repeat some things I wrote last April that I'd like the world to be aware of:
I want people to be aware that people with autism are people, deserving of respect and tolerance. That many of them are very smart. That just because a person may not speak does not mean he does not hear, and feel, and understand.

I want people to be aware that autism is as much a part of who a person is as his ethnicity or skin color or sexuality. And like all of those attributes, autism is a difference, but not better or worse than any other way of being.

I want people to be aware of the sensory integration problems that often plague individuals on the spectrum. I want them to imagine how they would react if every sound were amplified ten times, or if they could not sense where their own body was in space, or if even their softest clothes constantly grated on their skin.

I want people to be aware that their snap judgments of what they perceive as a mother's poor parenting skills may not accurately reflect the situation they are observing. I want people to understand that when a child with autism has a meltdown in public, it's not because she's a spoiled brat, but because her brain is not wired to handle life in a neurotypical world.

I want people to respect that children with autism may be developmentally delayed by a couple of years in some ways but operate at an age-appropriate - or advanced - level in other ways. That in spite of whatever limitations they have, many individuals with autism are quite gifted in other areas.

I want people to be aware that the autism spectrum is a diverse and confusing range of symptoms, behaviors, challenges, and strengths.

I want people to be aware that individuals on the spectrum are loved by their families and are capable of loving others and of living lives that are meaningful and satisfying. That life with autism can be as much a cause for celebration as any other life.