Survey Opportunity

So a few days ago, I received a note on this blog alerting me to a study being done at Fordham University concerning the effects of spirituality on autism parents. It looks like a really good opportunity parents to help researchers understand one of the most  underreported aspect of many their lives. So I’m posting the note here, and encouraging everyone to participate. Note that it is concerned with how “spiritual variables may contribute to or detract from growth.” So this is meant to look at the topic objectively, and not ideologically.

So take a look at the note, and follow the link for the study. Let’s try to help the researchers get as full a picture as possible. Thanks!

Hello. My name is Elizabeth Tobin. I am a graduate assistant for Dr. Mary Beth Werdel, Ph.D., an assistant professor of Pastoral Care and Counseling at Fordham University in New York. We are conducting an anonymous study to explore spirituality as a coping resource for parents raising a child with an autism spectrum disorder.

The goal of the study is to increase our understanding of the ways spiritual variables may contribute to or detract from growth following the potentially stressful life experiences of raising a child with an autism spectrum disorder. It will take approximately 20 minutes to complete the survey.

I wonder if you could help us find parents by posting a link to the research study on your blog? We would be very grateful for any help you could provide.
If you have any questions about the project you may contact Mary Beth Werdel at mwerdel@fordham.edu

Survey link:
https://fordhamgsas.co1.qualtrics.com/SE/?SID=SV_5sBcgemYr8orrmd

Words from the Unwise

Lawsuit-Officer-handcuffed-elementary-school-students-with-ADHD

So this bit of news has been making the rounds the past couple of days among autism and other special-needs parents. It seems that in two unrelated incidents, a police resource officer in a Kentucky grade school put an eight-year-old boy and a nine-year-old girl in handcuffs in order to restrain them—cuffing them around their biceps because their small hands would slip through the cuffs. Both students have ADHD, and the girl also had a history of some kind of trauma.

The school was aware of the children’s diagnoses, as was the police officer who cuffed them. Both students had been removed from their classrooms because of disruptive behavior, and when the principal was unable to contain the situations, the officer took over, employing the handcuffs. (Note: watch the video at the top of the article at your own risk. It’s very disturbing.)

According to the report, the girl was especially upset by the situation, to the point of needing psychiatric treatment in a hospital. Understandably, both sets of parents are suing the officer involved.

This is a very sad story, especially in a time when attention has already been focused on police officers abusing their power and mistreating people who live on the margins. These incidents may not rise to the level of Freddie Gray or Michael Brown, but they come pretty darned close.

I don’t want to say much about the incidents—I don’t like stating the obvious or dwelling on people’s stupidity. But I do want to look at the article that described the situation. Actually, not the article (although it does have a couple of really embarrassing typos), but the utterly irresponsible headline that was assigned to it:

Lawsuit: Officer handcuffed mentally disabled kids as punishment.

Disabled? Mentally? What does that even mean? The report only talks about ADHD and some unspecified trauma. It’s not as if the kids had been lobotomized or anything. There’s nothing in the report that indicated the students were “disabled” in the sense that most people understand that term.

It doesn’t take a genius to see how this terminology places a kind of perception filter over the whole story.

“Oh, the kids must have been truly and deeply disturbed.”

“I can understand why the principal let the officer shackle the children.”

“These are mentally disabled kids—it’s not as if they were ‘normal’ kids. I guess it’s okay.”

It may not seem like a huge deal—just a matter of poor wording. But in this time when the Americans with Disabilities Act is celebrating its twenty-fifth anniversary, we don’t need to be going backwards. Remember, it was the ADA that ushered in the era of person-centered language. So we talk about a man with schizophrenia rather than calling him a schizophrenic. We talk about a woman who can’t walk instead of calling her a cripple. And we talk about a child with ADHD rather than calling him mentally disabled. Or at the very worst, we call him a child with a disability.

It shouldn’t be rocket science at this point in our history, and yet here we are. We’re still using hurtful, discriminatory words. Words that justify abuse, fear, and marginalization.

ADHD Hall of Fame.

But that’s not all. Terms like “mentally disabled” give the impression that the kids are slow learners or are academic underachievers. It puts them in a category of “less than,” when there is absolutely no evidence in the article that this is the case. For all we know, these kids could be total freaking geniuses who happen to have ADHD. It’s not uncommon, after all for this combination to occur.

Here, for instance, is a list of some well-known, very successful people who also have ADHD:

  • Virgin Airlines CEO Richard Branson
  • Quarterback Terry Bradshaw
  • Musician Justin Timberlake
  • Pulitzer Prize Winning Journalist Katherine Ellison
  • Comedian Whoopi Goldberg
  • Actress Michelle Rodriguez

Would you call any of them “mentally disabled”?

Words from the Unwise.

It’s possible that the editor who created this headline thought the article would get more views if he or she used a provocative title. Or maybe the editor was trying to allude to the recent police brutality stories. But it was a very poor choice of words. It’s deeply offensive, and it did a huge disservice, both to the story and more important, to the kids.

But hey, I guess we’re making some progress. At least the headline didn’t call the kids retarded.

A Fortunate Slip of the Lip

Fourth Doctor Gobsmacked

Note: This post originally appeared as a guest post on the awesome “Confessions of an Asperger’s Mom page. Many thanks to Karen for inviting me to share my story with her readers. You should definitely check out her blog, as well as her Facebook page. She has a lot of wisdom to share.

I could have sworn he was downstairs. Really. I wouldn’t have said what I did if I knew he was in his bedroom—well within earshot. As Katie and I were going up the stairs this afternoon, I was recounting how this kid (#4, nine years old) had taken such good care of his younger brother (#6, six years old) at the neighborhood pool. If I had known he was in his bedroom, at the top of the stairs, changing out of his bathing suit, I would not have said, out loud:

“And [this kid], our autistic son, did really well today. So much for the old myth about empathy!”

“Dad? What does ‘autistic’ mean?”

My heart sank. It was probably the first time he ever heard himself described as autistic.

It’s not that I was hiding it from him. I had been wanting to tell him for some time now. I just didn’t know how to do it. And I didn’t want to manufacture some Hallmark moment where there would be this big reveal and a whole new understanding. I wanted it to be natural and, well, right. (Plus, I was also a little chicken.)

No Good Opportunity.

You see, he’s one of six, and they’re all autistic. His two older brothers and older sister already know about their diagnoses—and they found out more or less by accident as well. At least, it didn’t happen on my terms and in a way that I wanted it to. (Insert chicken squawks here.)

So autism is pretty much the lay of the land in our family, and that means he doesn’t really stick out at home enough to wonder why he’s different. All the kids present a pretty consistent profile of being on the higher-functioning end of the autism spectrum, so he’s got a built-in tribe of autistics to relate to.

He also manages to blend in pretty well with his peers at school—at least so far. He’s only in fourth grade, too which means that his classmates are too busy running around on the play ground to pay much attention to his quirks or language glitches. Plus, he works hard to try to fit in. It’s not perfect, and it can lead him to come home tired, moody, and explosive. But it works.

So there didn’t seem to be any need to explain autism to him. (Squawk!!)

Stumbling into The Talk.

Anyway, there I was, completely unprepared for the talk. But there was no getting around it; I had to answer his question.

I brought him into our room along with Katie, and asked him, “What did you hear me say?”

“You said I was autistic and I have empathy.”

“That’s right. Do you know what empathy means?” (I was stalling for time.)

“No.”

“It means that you care about how other people feel. It means that you can feel their feelings, and you want to help people who feel bad. That’s a really good thing, and I’m so glad you are like that.”

“Okay. What about autistic?”

I hesitated, not sure exactly what to say. Then Katie stepped in and saved me. “It means you think outside of the box.”

O merciful intervention! I knew that this kid thinks too literally to grasp metaphors like that. But that was a good thing; it gave me something concrete to react to. I didn’t have to come up with a complete explanation out of nowhere. The talk was happening all by itself.

Autism Is. . .

So I told him that “outside of the box” means that God made his brain a little different than most other kids’ brains. I talked about the cool gifts this brain gives him, like his laser focus on math and cooking and singing. He’s got some real talents there. Then I talked about challenges like how he can have a hard time putting words together or how he sometimes struggles understanding when someone’s talking to him. I hit on a couple of others, like emotional regulation and his need to jump around and get giddy sometimes. Then came the Big Finish.

“So there’s something a little different about you. That doesn’t make you weird. Just different. Autism isn’t a disease or a sickness. It just makes you special. Got it?”

“Yeah.”

“Any questions?”

“No. Can I go type on the computer now?”

“Sure thing. Knock yourself out.”

No Drama.

And that was that. No fuss. No drama. No nothing. None of the baggage that the world gives to the word autism. None of the baggage that I can give it, either. Just another word to help him describe himself.

In a way, I’m glad that it happened like this. I didn’t have time to worry about developing the perfect speech. I didn’t have the luxury of turning it into a thing, which might risk emphasizing the difference more than I wanted. I didn’t have enough of a chance to screw it up, either.

I also liked the way it became just another thing that happened today. Mind you, I’m not sure how much of it he really grasped. But I didn’t want to push. It doesn’t really matter anyway. We began a conversation today that will unfold and deepen over time.

No Big Deal.

So there you have it. My son found out that he is autistic, and he’s doing just fine. An inopportune-but-opportune moment presented itself, and we did our best with it.

It may not sound like the best approach, but there’s something really appealing and “normal” about things like this happening within the natural flow of everyday life. It helps the kids see that it’s not a big deal. It’s one facet of who they are, and it has no bearing on how much we love them or how much dignity or value they have—in our eyes or in God’s eyes.

That’s four down, two to go. I think I’m getting the hang of this thing. So bring it on!

No Rules, New Rules, One Rule

IMGP4810

So last night, the Fourth of July, held a minor victory as our oldest kid did pretty well facing his fear of fireworks. All the kids did pretty well, in fact, with each one showing a little more improvement in the sensory processing realm. Plus, they got to stay up later than usual. Mind you, we didn’t go anywhere for fireworks. We’re just talking about the small-time crackers and roman candles that some folks in the neighborhood set off. Still, progress is progress.

Anyway, this morning we ended up paying for the late night and the extra stimulation. As we were trying to get everyone ready for Mass, we were presented with two very strong tantrum-melt downs from two different kids, one stubbornly tired kid who could barely keep his eyes open, and another one exceedingly anxious about the her siblings’ potentially bad behavior in church.

We tried to roll with it. We really did. But after a while we realized that Mass just wasn’t going to work. It was too risky. So we played hooky. Sort of. Rather than go to our local church, which is only a half-mile away, we loaded everyone in the van and drove twenty miles to Mount St. Mary’s University–my alma mater of a Catholic college.

A Mini Pilgrimage.

The van is a safe zone. Each of them can enter their own world, whether by staring out the windows or by putting on their head phones and listening to music or by taking a quick nap. It’s one way to help them press the reset button, and that’s pretty much what happened. By the time we arrived, they were doing better. Not great, but better.

We spent about an hour there, walking the nearly empty campus and visiting the Grotto, which is a replica of the shrine to the Virgin Mary at Lourdes, France. We ended with a visit to the grotto chapel, where I had the kids sit as quietly as possible for as long as possible (5 minutes) and told them to try to pray. Then we read the Gospel reading they would have heard if they had gone to Mass, I said a few words about it, and we left. Nothing big. Nothing dramatic. And no other people around.

The kids did pretty well overall. We did have to deal with some sensory issues and low-level anxiety. And our toe-walker started to complain about pain in his legs from all the uphill walking. But I was glad that they got the message that Sunday is more than just another day. It’s still the Sabbath. It’s still the day that we honor God as a family. They saw that the alternative to missing Mass isn’t a free pass to video games.

A New Rule Book.

I don’t like skipping Mass. I really enjoy the closeness to God that I feel there. And for the most part, I can see how it helps the kids. But as far as I could see, there really wasn’t an alternative.

This is one thing that I’ve learned again and again as an autism parent: you have to learn to live by a different set of rules. It seems that everything we do—from church services to school, to recreation to family gatherings—we do differently. And there are times that we have to throw out even our modified rule book. But that’s okay. Because the only rule that really matters is this: Love and accept your kids where they’re at, and they’ll be more likely to follow where you want to lead them.

Who’s Leading Who?

So today is Father’s Day. In honor of the day, I thought I’d dust off a post from a few years ago, update it a bit, and repost it. (That, and I’m too busy being a dad today to write something new.) So here goes:

Who’s Leading Who?

In one of the lesser-known resurrection accounts in the Bible, Jesus tells Peter: “When you were younger, you used to dress yourself and go where you wanted; but when you grow old, you will stretch out your hands, and someone else will dress you and lead you where you do not want to go.” The passage goes on to explain that Jesus said this to signify “by what kind of death he [Peter] would glorify God” (John 21:18-19).

This passage has always had special resonance for me, to the point of being a kind of interpretive key to almost all of the major events in my life. It sounds kind of grim, doesn’t it? All this talk about being led where you don’t want to go and dying—even if that death glorifies God. But that hasn’t really been my experience. Rather, I’ve found a surprise or two along the way as I’ve seen these words unfold in my life.

One major surprise came when I realized who it was who would end up leading me along unexpected paths: my own kids! Now I’m sure that many parents can relate. None of us really knows what to expect when we hold our first child. We can never fully appreciate how much our lives will change now that we have welcomed this new person into our lives. How much more when you are blessed with six children! And how much, much more when it turns out that all six children are on the autism spectrum!

Unexpected Paths.

I named an earlier post “A Little Child Shall Lead Them,” and I meant it as something more than a clever play on words. I can testify that my kids—all six of them—have led me in ways I never expected.

  • They have led me to the waiting rooms of psychologists and psychiatrists and speech and occupational therapists as I have sought to understand their challenges and help them make sense of them as well.
  • They have led me to school conference rooms, where I have advocated for them and labored mightily to convince unimaginative, one-size-fits-all educators to give them a fair shake.
  • They have led me to my knees in prayer—not desperate prayers for their healing, but impassioned entreaties that God will grant them a future full of hope, a future where their gifts are welcomed and where they can make a difference for other people.
  • They have led me down rocky paths as I have helped them work through sleepless nights; relationship challenges; full-scale tantrums; days-long depressive episodes; and anxious, hours-long perseverations.

Death and Freedom.

Now, Jesus told Peter this stuff as a way of hinting at the kind of death that awaited him. And that has proven true for me as well, in a more figurative way. No, I’m not writing from beyond the grave! But my kids have definitely led me to experience other kinds of “deaths”—

  • The death of my dream for a Brady Bunch kind of life. It was a pretty self-centered, self-indulgent dream anyway, and I’m glad it’s gone. Now I don’t have to worry about how clean or dirty the house is. Or about when my kids are going to record their first pop single.
  • The death of any rigidity or legalism I may have brought to my ideas of parenting. I have learned to become much more flexible and creative in my parenting. “So what if she wants to wear all black clothing to church?” “You want to stay in your bed to avoid the noise of the dinner table? Knock yourself out! Just make sure you eat afterward—and clean up your plate.”
  • The death of a few close friendships due to some people’s lack of willingness to “get” our family’s dynamic. This was especially hard at first, but I realized that it’s in times of difficulty that you learn what your friends are really made of. That’s when you have to decide who is really worth your time.
  • The death of a romanticized take on the spiritual life. There are no simple answers. There are no guaranteed formulas. And yes it’s true; sometimes God does give you more than you can handle. That’s why he gave us each other. It’s also why he created wine.

It’s ironic, but each of these deaths has made me feel a little more alive and free. Little by little, my kids have led me to a place of surrender. Not defeat. Not resignation. But acceptance. I have learned so much about myself; about human nature, both the bad and the good; and about God that I feel like I’m a very different person now compared to who I was when our first one was born. And that leads to the final part of this passage.

An Unforeseen Glory.

According to the story, Jesus was pointing to the way Peter’s death would glorify God. Well, I’m not about to think that I give God all that much glory. Not unless he is glorified in huge messes! But I do think that the deaths I listed above have helped me to see God’s glory in new, unexpected ways.

  • I see his light shining through my nine-year-old’s unassailable innocence, both when he’s in full melt down mode and when he’s completely aflutter with the joy of something as helping Katie cook dinner.
  • I see him shedding a tear when my fifteen-year-old gets himself tangled up inside and needs to be talked down from a ledge of self-condemnation.
  • I feel his arms around me every time I dive into yet another parent-teacher conference or begin yet another bitter disputation with the insurance company.
  • I see his covenant commitment every time I come home and watch Katie coaching the kids in homework, making dinner, and trying to help the six-year-old overcome his loud, insistent perseverations all at the same time.

So yeah, there’s a lot of good stuff that comes from these little, unlooked-for deaths. Leave it to religion to be so delightfully paradoxical!

This Is My Body.

 For those of you who don’t know, I’m a Catholic, so this last one comes from my faith tradition. More than anything else, I see God in the bread at Mass as he says, “This is my body.” But I don’t just see and believe. I’ve also found the audacity to pray in return: “Hey! Over here! This is your body, too—this precious family you have given me. We’re part of you, and we all belong to you. So don’t pass us over or forget about us. You made my kids this way, so you’re stuck with us.”

Then I go one step further and tell him, “And here is my body, my life. It’s nowhere near the image of you that it’s supposed to be. It’s still too much shadow and not enough light. Still, I offer it to you. Go ahead and keep leading me, even if it’s where I don’t want to go. With all of these little deaths, you have found so many ways to empty me. And I guess that’s fine. But now I need you to fill me and raise me up so that I can give myself—body and blood, soul and humanity—back to my children.”

And the Lord reaches out his hand to grasp mine, and responds: “Amen.”

Happy Father’s Day, everyone!

Crafting a New Narrative

The Doctor–Stories in the End

We had a dear friend over for dinner a couple of nights ago. I’ve known this woman for nearly thirty-five years, and we have worked together for thirty of those years, both as teachers and in our publishing company. She’s a delightful British woman with a heart of gold. She’s involved with prison ministry, she feeds homeless AIDS victims, and she writes children’s books. She’s also very easy with the kids. Nothing fazes her. And to top it off, she even looks like Julie Andrews!

So why was I getting increasingly eager for the evening to end? And why was I so exhausted after she left?

  • Because I’m unused to people visiting our home. We tend not to have people over because it can feel like so much work.
  • Because Katie and I have let ourselves get so wrapped up in this autism thingy that we can lose track of how to relate to people outside of the “tribe.”
  • Because I caught myself wanting to talk about the kids and their challenges, even when it wasn’t necessary or germane to the conversation, and it took energy to stay on topic.
  • Because, much as Katie and I love this person, we inhabit different worlds, and I don’t know how to “be” in her world any more.

Moving Beyond “Past Performance.”

These are all viable reasons. But the more I thought about it, the more I saw that something else was going on. I saw how I’m always on edge around other people—especially when I’m with two or more of my kids. I’m always worrying about which kid is going to act up next and which unique  aspect of our lives I will have to explain this time. Sensory issues? Social missteps? The “oncoming storm” of a tantrum or melt down? World-class perseveration? So I avoid these situations. I don’t look for opportunities to get together with other people or to get the kids out and about as much as I should. And that’s not good.

The thing is, even though I fear the worst, it’s not a foregone conclusion that something bad will happen. It’s true that when things do go south, they head there with a quickness that can make the head spin. But that’s not always the case.

Thinking about this, I recognized some other assumptions or expectations I have—and not just about visitors. “We can’t all go out to dinner; it’ll get too messy.” “I know that Mass is going to be a disaster this Sunday because so-and-so had a rough week at school.” “Another IEP meeting? What’s going to go wrong this time?”

See what I’m doing? In each of those situations, I’m accepting a negative narrative for our life, and I’m letting that narrative drive my decision. Of course, some of my concerns are justified. Things can get pretty challenging for us. People can (and often do) misunderstand us. School teachers and administrators still have a way of minimizing our kids’ challenges.

So yeah, we’ve got some history to draw from. But just as those investment firm commercials tell you, past performance is not necessarily an indication of future results. And the worst thing I can do is expect bad results. Sure, there are some things I know will cause immediate problems. But a lot of other events and situations inhabit that gray area where the outcome is far from predetermined. The problem is, I’ve been painting that gray area black recently, with the result that our kids aren’t getting the opportunities to develop their social skills and coping mechanisms—not to mention the fun they could be missing out on.

Make It a Good One.

So here’s to branching out. Here’s to taking steps—baby steps at first—toward exposing our kids, and ourselves, to new experiences. It’ll probably be a bumpy ride, but they’re usually the best ones. As The Doctor once told Amy Pond, “We’re all stories in the end. Just make it a good one, eh?” So here’s to changing the narrative so we can make it the best story in the world!

There’s No One Like You

Glaceon

This morning, I was greeted by an e-mail written by my fourteen-year-old daughter. I liked it so much that I decided—with her permission, of course—to post it below. Take a quick look, and you’ll see why I’m so proud of her—and all my kids!

Have you ever felt worthless, like you don’t belong in this world and the world would be a better place without you? Well I have felt that way sometimes. I have what’s known as Aspergers Syndrome, another form of autism. I’ve always felt left out, like I’m not good enough, even though I know that’s not true.

I used to go to a private school in Florida for kids just like me until my family moved to Maryland. Now I go to a public school with a lot of kids who aren’t like me. Not only that, but I’m now with a group of friends who are all atheists, and I’m the only religious person in that group, so I really feel like I stick out. And that can make me feel bad about myself again.

I’m not saying that my disorder is a bad thing; no, it makes me special. I have the right to live no matter how bad I feel sometimes. Aspergers is just one of my many special qualities and you can’t take that away from me! I will live the rest of my life with this disorder, but as of now, me being a teenage girl, I’m young and insecure, I’m on a wire balancing my dreams, hoping ends will meet their means, but I feel alone, uninspired.

I might like things that others don’t, for example Pokemon, Anime, Creepypasta, and FNaF. I do sometimes feel worthless and left out. Sometimes I wonder why I’m even alive. But am I going to give up? NO! I will stick with myself. I will surpass all of my fears, difficulties, insecurities, and faults! Even when I go into high school next year, I will walk through those doors with confidence, and if I don’t then shame on me!

I need to look at the positive side of life. My past might haunt me, and my brothers might make fun of me, but I am a YouTuber, a DeviantArtist, an honor roll student, and a good friend. I would help anyone I know through problems that they are having, and if I can’t, then I would tell them that everything is okay and help them back up.

I might be very different from everyone else, but just know one thing. If you feel worthless, look inside of yourself and see how much you matter to God. So please look at life in a good way and try to ignore the faults of humanity. Have confidence, be yourself, and if anyone tells you otherwise, ignore them and follow your own path! You are you, and there is no one like you!