Hope is a Good Thing

The last couple of weeks have been an emotional roller coaster for Cheeks and me. We’ve had a lot of hard moments. I’ve been torn about whether to write about them, because I feel so strongly about treating him Screen Shot 2015-11-20 at 1.00.50 PMwith respect. Sometimes that means protecting his difficult times from public view, as any of us might do for ourselves. On the other hand, it’s also important to me to be authentic about our experiences, and that includes the less attractive sides. There’s no shame in our story, so there’s no need to conceal it. I land on different sides of that argument depending on the circumstances. This time, I have decided to tell the story.

A few months ago we were introduced to a teaching method for students with communication disorders that we have come to believe will be a good fit for Cheeks. It’s a somewhat controversial methodology, mostly because mainstream credibility only comes from having a wealth of data supporting its efficacy, and this program does not yet have that. But as I have written here before, the decision to try something with Cheeks has to be subjected to two questions: 1) Is the risk low enough relative to the potential reward?; and 2) Can we do it in enough isolation that I don’t attribute changes to one intervention that are actually due to another? Having passed those two tests, we decided to try this program. I will write more about that in a future post. It’s not a private matter, just not the topic today.

Early results have been good, Cheeks is responding well to his academics. So well, that he is showing capabilities I have long believed him to have, but that we have been unable to access before now. I can’t overstate how huge this is for both of us. I’m able to see his intelligence, and he’s starting to be challenged at his true level of ability.

But, my mother always said that nothing worth having comes easily. And so it has been true this time as well. Cheeks has been experiencing so much disruption in his psyche that it’s manifesting itself in some pretty extreme behavior. He’s always shown self-injury when he’s upset or anxious, and lately we’ve had an increase in the intense moments that trigger it. Even more concerning is that he has shown some aggression to me during these tantrums – something he has only done a few times before in his life, and never this deliberately. Right now I’m sporting a few battle scars.

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One of our many happy moments.

I’m left with this strange combination of emotion. I am so filled with hope and certainty that we are doing the right thing in starting this program. That certainty has never come to me with any therapeutic decision we have made up until now. It has been absolutely glorious to feel it. But I am also distraught over what ostensibly appears to be regression in his behavior. There really is no pain like watching your child in so much distress that he causes bruising and bloodshed to both himself and someone he loves. I know he doesn’t want to feel that way, and he doesn’t want to hurt me or himself the way he has. I’m constantly wondering when the wrong bystander will see something out of context and his or my security will be threatened on a whole new level. And the process of experiencing all of this at the same time has been emotionally exhausting for me.

Autism isn’t pretty, I already knew that. And my resolve has not been shaken. I know this will end up being a good thing for Cheeks, I just know it deep in my heart. The getting there will challenge us, maybe more than anything has before. It will be hard, for sure. But the only thing harder than that would be not doing it.

 

Holiday Gift Giving to Autistic Kids

Screen Shot 2015-11-10 at 9.29.57 PMThe calendar may say early November, but the holidays are around the corner—ready or not, here they come.

At this time of year, those of us with kids in our lives find ourselves wondering what might make a good holiday gift. But a child with a communication disorder such as autism can’t always tell us. Or they may have trouble figuring out that even though we’re asking now, the gift doesn’t come until later. They might struggle to understand why they can’t expect to receive everything they asked for. In some cases, a child with autism may even ask for something that is impossible to deliver. For example, Cheeks once wanted his left thumb placed on the other side of his palm, next to his pinkie. Although I think that was just a Tuesday, not a holiday wish. And no, I still don’t know why.

Having autism doesn’t make kids alike in any way I can predict, so this isn’t a gift guide. But there are definitely some recommendations I can make about the context of your choices.

If the child you want to give a gift to a child that has focused interests (read: obsession), it might seem like the natural place to start. I urge caution. For example, Cheeks is currently very into superheroes, especially Batman. But three months ago, it was Scooby Doo. A few months before that, it was classic cartoons such as Tom & Jerry or Wile E. Coyote. Batman might not be in vogue anymore by December 25th; you might have heard there’s a little Star Wars moving coming out that could be a hit with him and a few other people. His interests are narrow, but deep, and they come in cycles. I can’t predict where we are in the cycle. If you want to choose a gift for any autistic child in your life, please don’t rely on surprises. Ask the parent to tell you outright what would be a good choice.

NO clothes! I can’t stress this enough. Most kids don’t love opening up socks and underwear on Christmas morning anyway. But the sensory challenges presented by autism mean that tags, textures, seams, colors, sizes, sleeve length, and even more are all at risk of being completely wrong. And don’t mean wrong as in, less preferred but still could be worn on laundry day when nothing else is clean. I mean it will be untouchable, not permitted even within potential eyesight of the child. I am not exaggerating. Better to avoid this category altogether.

If you like to give educational gifts, then keep mind what I have said on this blog about presuming competence. However, there are areas of developmental ability in autistic kids that are not in sync with their age. I know Cheeks has all the cognitive ability of his ten-year old peer group, but he does not have a similar communication ability. He comes home with library books from school written for a child in kindergarten, because that’s what his reading level seems like when he expresses himself. And—brace yourself for this shocker—my 4th grader isn’t interested in kindergarten books. On the other hand, he might love a sensory toy that to an outsider looks like something designed for preschoolers, because the sensory experience is calming to him. The point is, you can’t follow age guidelines in the same way as you can with typically developing kids. Talk to someone who knows the child’s abilities. If you want the gift to be a surprise to the parent too (which I don’t recommend, but there may be good reasons), then seek out a teacher, therapist, or other caregiver who knows the child well.

quotescover-JPG-85Lastly, and perhaps most importantly, please let go of the expectation that your gift will be greeted by a face lit up with holiday joy. I know it’s one of the best parts of gift giving, but emotional responses are difficult for autistic kids. It doesn’t mean they don’t feel the joy, it only means they don’t know how to express it. And if the gift misses the mark, you may hear about it in a way that would be considered rude coming from another child. Let it go, and let your real gift be compassion and understanding, and not what’s inside the box.

Julia, the Autistic Muppet

Last week, Sesame Street announced that it is introducing a new Muppet-style character with autism. I love this for many reasons, one of which is because they are making her a girl (named Julia). That’s a deviation from what would be expected, since autism is five times more common in boys than in girls. Creating this character as a girl challenges what people think they know about autism, and about who they think may be autistic among people they meet.

Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/
Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/

I think many people, upon hearing the news, were under the impression that Julia would be seen on the popular PBS show we know and love. In fact, there are no current plans to put her on TV. She’s only featured in one digital story book, called “We’re Amazing, 1, 2, 3!” If you were under the impression that Elmo was getting a new autistic friend in any recurring way, that’s still unclear. Although I wish we could anticipate more visibility for Julia, she’s still part of a great library of online resources designed to celebrate amazing qualities in all children.

The most intriguing reaction to the news of Julia’s character that I found was an article in the New York Times, which suggests that unbeknownst to us, The Muppets already had an autistic character. If you know The Muppets at all, you definitely know this one. He can’t figure out what his audience will find funny, he often misunderstands metaphors, and even has a verbal tic (wokka wokka wokka). You guessed it… Fozzie Bear. Read the article, and more about the writer’s theory, here.

When I read this column, it made so much sense to me. I’ve known lots of autistic kids that interact with others in a similar way as Fozzie. But the best part of all is that no one ever thought to label Fozzie as autistic. As part of The Muppets, he’s just another lovable character among many, all of whom have their own oddities. Fozzie may fit the diagnostic criteria of autism, but he’s not an autism character, or any kind of stereotype. He’s comedic without being a caricature.

Autism acceptance is not simply passive tolerance. It’s not just about finding ways for kids with autism to learn, play and function alongside their peers. And it’s not just about teaching typically developing kids to understand their peers that have differences. At it’s best, and the goal, is to make it about allowing people with neurological diversity to be just people, and not be defined by what society deems to be a disability.

I celebrate this new character of Julia. But at the same time, I just crave more Fozzie.