LIFE IS A SPECTRUM

There's a line in the Disney story "Cars" that reads, "Sally was touched." It's the moment when the main car's girlfriend is overwhelmed by emotion when the neon lights of her Route 66 town are lit up for the first time in decades.

cars_lunch

Billy loves "Cars." He doesn't call it "Cars," though. He calls it "Mater," after his favorite character. He loves the movie; he loves the books. He loves the matchbox-sized replicas of the characters. He loves his Mater-themed Pullups and his sippy cup with Lightning McQueen on it. If you have a kid going through a Cars phase, at first you consider yourself in luck, because it's everywhere. Then one day, you look around yourself and realize, "It's...everywhere."

So anyway, Sally was touched. Billy repeats this line as he reaches out his pointer finger and pokes me in the nose. "Sally was ... touched." Poke. Again and again. Sally was touched. Poke.

See? He's touching me.

It's almost like he realizes that he doesn't quite get this line. So he's working it out by thinking aloud.

A lot has been written about how literal autistic people can be, how they often don't get jokes or understand metaphor or irony. So I've been going out of my way to explain this line every time it comes up. "Sally was touched," I say, "means that she was happy, that she felt love. She was touched in her heart." And I pat myself on the chest.

Billy stares at my hand patting my chest. He's thinking.

Poke. "Mama was touched." He smiles. And for the millionth time, I wonder how much he actually knows.

It's like when we were practicing egg hunting this week at his friend EJ's house. Billy loves finding the eggs this year. He'll spot one, his face will light up and he'll go tearing across the yard toward it.

Then he opens it up, eats the candy out of it, and leaves the open plastic egg lying in his hiding place. I looked around the yard at one point and saw half a dozen plastic eggs, broken open and still lying in their hiding place, his basket long since abandoned.

I took his hand, led him to a hidden egg, and showed him how to pick it up and put it in the basket. He sighed, and moved on to the next egg, dutifully picking it up and dropping it in the basket. Then he started singing the "Clean up" song while he worked.

Any parent with a child in preschool knows the "Cleanup song:" Clean up, Clean up/Everybody everywhere/Clean up, clean up/Everybody does their share."

Dave watched him for a second and laughed. "You know," he said in his English accent, "I think Billy has a point. Easter egg hunting is a little bit like bleedin' 'clean up, clean up.'"

One of these days, Billy's gonna be watching "Cars" and finally turn to me and ask, "How can a car have a girlfriend? Or a condo in Hawaii? And if they're all cars, who changes their oil? And who installed the hardwood floors and ceiling fans in the court house?"

And then I'll know he's going to be just fine.

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autismawareness

We made a few changes to the website over the weekend. I say "we," when I actually mean that Dave made changes to the website while I did 45 tons of laundry. That is apparently what "we" did instead of taking down the "Happy Birthday, Princess" decorations, which are now in danger of becoming a permanent part of our interior design. Well, my birthday is in May so I suppose I could just have the world's first 39-year-old Disney Princess party.

At the right, you'll find a list of the most recent blog posts, as well as what people have had to say about them (under "Comments"). If you want to make a comment, just press the "New Comment" button under a blog post and let me have it!

"News" is a new section we've added, because I got tired of searching for "Autism" and "News" every day, and Dave found this cool site that would let me stream it all directly to my blog.

And on that note, Friday is World Autism Awareness Day, a kickoff to April being Autism Awareness Month.
I know I'm opening a can of worms here, but I have to say that I'm kind of ambivalent about the whole "awareness" months and days and ribbons. Not that I think any of it is bad. I just don't know if that's the best use of money and energy.

We could have a thousand people in Tallahassee get together and do a walk for autism awareness. And that would make a great photo on the front page of the Democrat. And we could all wear ribbons that look like puzzles ... and then what?

While we're doing a walk-a-thon, school budgets are getting cut and there are already fewer speech and occupational therapists servicing more autistic kids in the school system than ever. Or not servicing them, because they just don't have time. Billy, luckily, is getting exceptional services from his school system, but I know that there are backlog of kids in schools across the country, waiting to be evaluated before they can even begin to receive treatment. I've spoken to their worried, exhausted, frustrated parents. Believe me, they're aware.

We can raise more money for research, but if we keep researching the same thing over and over again (vaccination-autism link, which has been studied more than 20 times by the CDC alone), then how much progress are we making? I cringe at the thought that Autism Awareness Month is going to bring a host of new opportunities for Jenny McCarthy to preach her hysterical non-science to unsuspecting crowds.

And sometimes "awareness" seems like a consolation prize: We can't cure it. We don't have the funds to adequately treat it. Researching it is a political snakepit. So we're going to hold a rally, name a month, and make everyone aware of it.

As I write what sounds, even to me, like a cynical, smug excuse for doing nothing, I can hear a little voice in the back of my head asking, "So smarty-pants, what are you going to do? What's your big idea?" For some reason, this voice always sounds a little bit like Pee-Wee Herman.

I didn't have a plan when I started writing this, but now I've kind of talked myself into a corner, and I'm going to make a commitment to you: I'm going to call and write to every local, state and federal government official I can find until I get some answers as to why we don't have more therapists in the school system, and an expedited system for getting kids into treatment. For many families school-provided therapy is still the only autism treatment to which they have access.

I'm going to share the information I get with you and maybe, together, we can all figure where the logjam is and who I need to call or write to next month. Because as much as I'd like to think that Yoko Ono, our new World Autism Ambassador, is going to get everything sorted out by April 30, I'm pretty sure I'll still be making phone calls by the time the November mid-term elections roll around.

I'm totally open to hearing the opposing point of view about the necessity of Autism Awareness Days and the important strides that have been made because of them in the past. I'd be happy to find out that I'm completely wrong on this one, because I want to think that the time and money that's going into promoting this is well worth the effort and resources.

Reader Comments

The Grinch Who Stole Autism Awareness

EVERY day is autism awareness for me. I made a resolution on January 1 (and I swear, it is the only one I have kept in my entire life) that from then on, I would take very opportunity to raise awareness when it comes to autism. This mainly happens when EJ and I encounter a stranger and they are getting drawn into his web of adorableness (i.e. his curly hair). They might notice after about 5 minutes or so that he is jumping and flapping a lot or that every time they ask a question, his replies are not quite what they would expect of a 4 1/2 year old child. I

It is right about then that I say, "So, do you know anyone with autism?" 9 out of 10 usually say no and that is when I say enthusiastically, "Well, you do now!!". I have raised awareness at restaurants when EJ is busily hiding under the table or unraveling the fork/napkin combo or rearranging the sugar/Splenda packets. I raise awareness every week when he comes to my office at FSU and he sticks his head out of my office door to greet undergraduates who are waiting on the elevator across the hall. I raise awareness at parks when I see other parents eye him curiously as he reverses pronouns and talks a little too loudly to their children. Every day, every chance I get, I make others aware that autism is not always Rainman and that many children with autism and I quote one mother at the park, "look completely normal" (I guess we left the "I have autism" tshirt at home that day).

Therein lies the biggest reason why I raise awareness for children with autism like EJ. He has communication, sensory, social and cognitive issues which usually manifest mildly (depending on the setting), but sometimes he can act or behave so much like a typical child that he is judged by a typical child yardstick. Which makes people think he just needs some good old fashioned discipline or that he is just odd. Or maybe the way I am raising him is odd. Or something. But not autism.

Thinking globally, acting locally- JD in TLH

From Amanda

I like your style of awareness-raising. If everyone with an autistic child followed your lead, there would be much less need for a World Autism Awareness Day. It's much more effective, I think, for people you run into to actually meet an autistic child that for 1,000 people to put puzzle magnets on their cars. (Not that I have a problem with puzzle magnets. Every time I see one, I experience a slightly guilty feeling that I haven't bought one.)

So I'm gonna follow your lead. The next time Billy decides to eat his cheese sandwich at Beef O'Brady's under the table, I will make a point of introducing the puzzled but sweet waitress to her autistic patron :-)

Some thoughts on research

Ajay and I are constantly amazed at the misdirected efforts of various awareness groups. Take, for example, breast cancer. While awareness campaigns and lobbying may have had a place a couple decades ago, it's hard to imagine what they're really accomplishing now. It's terribly politically incorrect to point this out (and I'm a complete chicken/hypocrite- I just wrote a check for another Susan G. Komen walk a friend is doing!), but the fact of the matter is that there are several successful drugs on the market and pharma/biotech companies are literally investing hundreds of millions of dollars in developing more. All the breast cancer fundraisers in the world are a spit in the ocean compared to that. The only real value in "awareness" lies in changing human behavior- whether it's increasing screening/diagnosis rates or helping people relate to those with a particular condition, a la JD's comments.

On the topic of research, there are two organizations who I think "do it right:" the Alliance for Lupus Research and the Cystic Fibrosis Foundation (for full disclosure, I sat on the board of the ALR, but while this is a bit self-congratulatory, I certainly didn't invent their strategy!). Both groups took the approach of funding a ton of basic science research. Basically they started from the perspective that biotech/pharma companies are by far the most likely to develop successful therapies, but until we better understand what the disease is, they remain "uninvestable" areas for industry (their evil investors don't let them spend willy nilly on things they're unlikely to have success at). So nearly all of their funds are given to a board comprised of scientists who distribute them as grants to basic science researchers (in both academia and industry, which is interesting) who submit proposals to study some theory on disease mechanism in the lab. CF knowledge- largely as a function of the simplicity of the disease- progressed much faster and the foundation has evolved to fund very early stage drug development as well. As soon as the infrastructure of the disease landscape was in place, drug companies started investing in therapies targeting the aspects of the disease the researchers had uncovered. Lo and behold, there is a CF drug that's likely to be on the market in a couple years (and the CF Foundation was brilliant- since they funded early stage research at the company, they'll actually get a small royalty on sales of the drug).

The commonality with autism is obviously that we don't know enough about it for companies to invest meaningfully in therapies, so I would argue that similar funding of real basic science research (which, by the way, does not include epidemiology) by a private foundation is the best use of funds. It may be that this isn't a "drugable" disease (or even a "disease" at all), but even the development of non-pharmacologic therapies would be rapidly advanced with more knowledge of what we're dealing with on a cellular level. Maybe what I'm saying is that awareness of the scientific method is what really needs to be advanced. :)

From Amanda

I think that is the most sensible approach to the whole issue of "where do we put funds" that I've heard. I think that's what's missing in a LOT of awareness campaigns: a real strategy. Awareness is all well and good, but awareness of *what* exactly? The existence of the issue? How to treat it? The challenges people face with it? And once we're aware, what is our next step? How can we use this global awareness to make real change? And what should that change look like?

Those are the hard questions, and the autism community seems to have about 41 answers to each one of them. There are so many therapies that promise improvements, if not an outright cure, for autism at the moment AND SO LITTLE SCIENCE to back any of it up! It's so frustrating. And a basic understanding of what autism is is exactly what's missing.

I know so little about what kind of research is going on at the moment. I've read a bit about the work that V.S. Ramachandran has done with the whole mirror neuron theory. And I've read a little bit (as much as my non-science brain could make sense of) about the various genetic theories.

Defining autism is such a political minefield at the moment. As we have discussed before, so much time, energy and money has been wasted on the vaccine nonsense that more credible theories get neither the media coverage nor the funding and attention.

I would really appreciate your letting me know if you hear about any new science that we should look into. It's nice to know that I can get you or Dave to explain the studies to me :-)

World Autism Awareness Day

April 2nd was <a title="April 2 is World Autism Awareness Day" href="http://personalmoneystore.com/moneyblog/2010/04/02/april-2-world-autism-awareness-day/">World Autism Awareness Day</a>, and in case you missed it – here's a little awareness of the affliction. Autism can represent a wide variety of effects, with the mild (including Asperger's disease and mild forms that can come off as just being awkward) to the extreme, where folks need consistent care and assistance for life, and it takes more than a few payday advances for parents to care for children suffering from the disease. Autism is diagnosable early on, but the reason for the disease remains unknown, though there are several theories, affects males a lot more than females, and occurs in anywhere from 2 to 6 people per 1,000.

Total 5 comments

There was a time when I despaired that by the time my son was 3 or 4, he would abandon me in favor of his dad. Because he was a boy, I imagined that eventually, sports would start to infect his brain and he would come to pity me and my sad lack of any kind of ball-playing skills.

He turns four this summer, and Billy's ball games are still very inclusive of those with special needs like myself. "Billy Ball Tag," one of the games he invented, involves me throwing a ball in his general direction and missing, so that he can shout, "You missed!" I got serious skills in Billy Ball Tag.

Then there's "It's a fumble!" which requires one of us to pick up the football (an American football for those of you Brits who still insist on calling the round black-and-white one by the wrong name), running to the other side of the yard and screaming either, "Touchdown!" or dropping it and yelling, "It's a fumble!" When we fumble, we also have to fall to the ground and pretend to cry. It turns out that Billy's understanding of the rules of football are pretty much on par with my own.

Floortime therapy has taught us to follow Billy's lead when it comes to play. He has better ideas for games than anything put out by Parker Brothers. After he gets comfortable with playing a simple game, we try to add a little complication to it that will encourage his desire to communicate.

Dave is really good at this. He invented "Yummy and Yucky" bubbles. Billy dearly loves to have one of us blow bubbles. I've practically hyperventilated trying to keep up with his bubble jones some afternoons. One day, Dave watched Billy pretending to eat the bubbles. He copied him and Billy laughed. So they spent several minutes trying to catch bubbles in their mouths.

Then he started asking Billy, "Is it a yummy bubble or a yucky bubble?" And after Dave "ate" one and declared it "Mmm-mmm, YUMMY!" Billy tasted one, made a face, and said, "Yucky!" and a game was born. Eventually, another layer was added, as we declared bubbles "hot" or "cold," "scary" or "funny," and so on. Beware Billy if he gets hold of an "angry" bubble; he's like the Incredible Hulk.

Sometimes, when we add a complication to a game -- or a "playful obstruction," as Dr. Stanley Greenspan calls it -- we lose him. He just turns his back and moves on to something else. That's the sign that he's not ready to move up the communication ladder any further that day. Or it could just be a sign that our game isn't fun.

Case in point: "Three Little Pigs." Billy loves to act out certain parts of the fairy tale. He likes the part where he hides in his playhouse and I pretend to the wolf banging on the door. He likes the part where he escapes out the window and the wolf has to run after him. He likes the part where the pig jumps into the swing and flies to the moon to get away (a plot twist Billy added to the story). He does not like any attempt on my part to get him to sit down at the picnic table and do a craft in which we build a stick, straw and brick house.

"Stinky Broadfoot," however, is a game that gets more complicated every morning. It started when he climbed into my bed one morning and I told him that he needed to go to the potty with Daddy first and then he could get into "Mama's bed," as he calls it (I'm not sure he knows that Dave also sleeps in that bed). When he resisted, we explained that if he didn't get a new Pull-up, people would call him "Stinky" when he got to school.

Well, there is nothing in this world funnier to Billy than bad smells. He decided his name was "Stinky" and we all three rolled around the bed making faces and complaining about the smell. The next day, Dave adopted the name "Smelly Daddy" and I was "Malodorous Mama." And every day we have to come up with new names for "stinky." Billy has even developed some sort of dance where he holds his nose and waves his other hand back-and-forth in the air around him. God forbid any child at school should ever have some unfortunate gas incident. My child cannot be counted on for any sense of discretion where stink is involved.

As we were rolling around on my bed this morning, contorting ourselves with fits of laughter, I thought to myself that if this is therapy, it sure beats those months when we had him on the gluten-free diet and I spent all my time cooking. Now I can concentrate on developing my skills in "Billy Ball Tag." I'm our team's starting forward this season.

Reader Comments

Games as Autism Therapy

EJ is a "typical" boy just like Billy when it comes to his love of flatulent sounds. He is still pretty amused by his own and not so much anyone else's, however, I am sure it is just a matter of time. I am dreading the day when he learns the "F" word and revises his current exclamation of "Mommy, I am a gassy boy!".

We got him a soft T-ball set for Christmas and he seems to finally have some interest in "playing" T-ball after weeks of trying to engage him. I should note, however, that he derives the most pleasure not from hitting the ball on the T, but from demolishing my patio plants with the bat. See? Typical four year old boy!!

JD in TLH

Billy Ball Tag

I want to see a video of Billy Ball Tag in action!

From Amanda

First of all, there will be no videos of Billy Ball Tag, as even my ability to laugh at myself has a limit!

Billy does almost exactly the same thing with his T-ball bat. His uncle sent him this awesome kids' pitching machine that pumps a ball out of a shoot a little ways into the air so that you can hit it with the giant bat.

Billy LOVES to watch the balls fly into the air ... and land a few feet away. Again and again.

AND he loves to beat things with the bat. However, we haven't actually got him to put the two together yet :-)

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A couple of years ago, comedian Denis Leary (Rescue Me) published a book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid. He made some mildly funny comments like, "If God didn't want us to eat cows, why did he make them so slow? Did you ever eat a cheetah burger? No, and you never will." (With that logic, Denis must be scarfing possum burgers on a regular basis.)

denis-leary

He also made the following comments about autism: "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."

I don't know where to begin. But I don't have to. Leary was royally raked over the coals by absolutely everyone. From the Autism Society to his own college alma mater (for which he very successfully fundraises), everyone was demanding apologies.

He's a comedian. I get that. And I've said before, sometimes autism, like everything else, is funny. His statements, though, were not. They were idiotic, misinformed, tasteless, ignorant and hateful.

But even that I could have forgiven him if he'd come out and said, "You know what? I'm an ass, and I'm really sorry for what I said. I got carried away with being funny and forgot to be a human being."

But no, his explanation, when it came, actually accused everyone else of taking his comments "out of context." Unless the context was "Everything I'm about to say is stupid," I can't imagine how the context could explain away those statements. The title of the chapter was "Autism Schmautism."

Here's what he said as a way of explanation: "The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny ..."

Really? This is a big problem, is it? Because I know a lot of people in the autism community in this area and I've never met a single adult who had self-diagnosed himself as a high-functioning autistic to explain away a failed career. I've known some adults that I thought probably were high-functioning autistics, but to my knowledge, they're convinced they are completely normal.

Maybe this is some big trend out in Hollywood; those of you who live there will have to tell me. Stupider things have been trends: bed head, heroine chic, Channing Tatum. Maybe the big thing at LA parties that Denis Leary attends is to stand around and pretend to be autistic. That must make for one weird party.

Or maybe Denis Leary has been in the company of parents of autistic children who are musing on the possibility that some of their own traits seem kind of autistic too. We do that. The whole puzzle of it seems so baffling that we search ourselves for signs of this disorder to try and make sense of its sudden appearance in our families.

Dave and I have spent many a night discussing this very idea that we're both a bit "Aspergers-y." I, for instance, have to read four books at once. They're stacked up at my bedside. I read exactly one chapter in each, move it to the bottom of the stack, and then read a chapter in the next. I also do housework this way -- four activities at once, and I rotate between them until they're all done. I count compulsively. I have a phobia of the telephone. And social situations. And dressing room mirrors (Ok, that's not so much Aspergers-ish as having a fear of seeing myself from behind).

Dave goes completely off the rails if he has the tiniest stain on any part of his clothing. It can be on his pants, behind his knee. And I'm not kidding: We have to turn the car around and go home for him to change.

What does all this amount to? Nothing really. It's just something we do to entertain ourselves or keep ourselves sane. Most people are a little weird if you get to know them. What is normal, anyway?

Autistic kids are described as being "on the spectrum," because autism's baffling range of symptoms, characterstics and behaviors can't be described in one succinct definition. You can be a "little autistic," though professionals don't like to talk that way. Traditional Asperger's falls at this high end of the spectrum. And Rainman is at the other end.

But we're all on some kind of spectrum. Normal, if it exists, is a spectrum. And on any given day, your point on that spectrum can change.

Happiness is a spectrum. Being in love. Sanity. Fulfillment. Being an a-hole is a spectrum and some days I get a little closer to the Denis Leary end of that one than on others.

So maybe Denis Leary knows a bunch of fake autistic people and their fake autistic kids who are using this for ...? For the life of me, I can't really see the advantage. To my knowledge the only perk that being autistic gets you is to the head of the line at Disney World, so maybe they really really like Space Mountain.

But I'm hoping that the next time he has the spotlight and talks about autism, he might focus -- instead of on this imaginary miniscule minority of people -- on the huge number of real autistic kids and their parents who are struggling every day to pay for therapy, find answers, and celebrate the smallest amount of progress. I'll grant you, that's not very funny.

So maybe he could just shut up.

Prompted by all the "Rescue Me" promos I've seen on F/X while watching "Damages," this blog post is an unnecessarily long way to say I won't be watching the new season of "Rescue Me." Because I think Denis Leary is loud and stupid.

Reader Comments

What a loser!

I had no idea Leary had said those things. That shows how popular his book was I guess NOT! He won't get my twenty bucks either.

Total 1 comments

We found a church today. At least, I'm pretty sure we have. We've been looking for a while, and talk about finding something right under your nose: We ended up at the same place where we've been attending Kindermusik every Wednesday night for the past 5 months, Good Samaritan United Methodist.

Dave went to the nursery with Billy and Willow to help ease Billy into his new surroundings. We explained to the nursery staff that Billy is autistic, and they were all just wonderful. After an initial, brief meltdown over the site of Mama high-tailin' it to the grownups' room, Billy apparently settled in very nicely. At coloring time, he helpfully shared his orange crayon with everyone, whether or not they wanted a bit of orange on their drawing and seranaded the whole class with a couple of verses of "Jesus Loves Me."

I got a glorious hour to sit in a beautiful room, sing beautiful music, pray quietly and ponder philosophical and spiritual points. It felt downright luxurious. Like a spa for Mama's soul.

There was a time when I took going to church for granted. I grew up in church with a tight-knit group of friends who went on trips together, put on plays, occasionally behaved badly and yet, were ultimately baptized into a family that was more than the sum of its parts. Church was fun -- and yes, uplifting and spiritually rewarding -- but when you're a kid, the fun is what gets you there. I always wanted my children to have the same opportunity.

When we moved to Tallahassee, we started looking for a church to call home. One of our first stops looked very promising: It was known for its extensive children's program, which was a priority to me. For a couple of Sundays, we attended, with Dave going to children's church -- a much more structured environment than Billy was used to -- with Billy. During the Bible story, Billy's echolalia (repetitive talking) continued. He was overwhelmed by all the new people and the number of structured activities; each small group quickly changed from one station to the next activity every few minutes. And he melted down.

But Dave reported to me that he was able to get it under control and felt that with a little time, Billy would settle into the routine.

The next Sunday, though, the teacher made it clear to Dave that Billy was too disruptive to the rest of the class. Ultimately, Dave just took Billy outside to play. When he told me what happened, I wrote an email to the head of education. I was upset, and I probably got a bit high and mighty in my quoting of the Bible and Jesus' words about "Whatever you do to the least of these, you do unto me," and waxing poetic about how it was supposed to be God's house and no one, certainly not a child, should be turned away.

Well, I felt genuinely mortified about 5 minutes after I sent the email. But shortly thereafter, the phone rang; it was the head of education, and my mortification couldn't come close to matching hers, she said. She couldn't have been nicer. She explained that Sunday school teachers were volunteers and they weren't always equipped or trained to handle special needs. I assured her I understood, and the last thing we wanted was to ruin any other child's experience at church. I thought we were really making headway, were really coming to a consensus. Next time, I promised I would attend with Billy; I promised to take him out at the first sign of a meltdown, and somewhat reluctantly, I agreed to teach him his Sunday school lesson by ourselves, in the hallway, so that his echolalia wouldn't disturb the other kids' lesson.

Then before we hung up, she said something that completely changed my mind. "Of course," she said, "I still can't promise you it's going to work."

You can't promise me it's going to work? If it doesn't, then what? We get expelled from church? Really? Ah, just forget it.

Compare that with the response I got from a gentleman at Good Samaritan today: "If we're doing our job right as a church," he said kindly, "you and your son will always feel at home here. No matter what." I admit it: I burst into hysterical tears. Great impression on the new congregation: Mascara smearing everywhere. I'm trying to talk and say, "I'm not usually like this," (If you know me, you know that I actually am just like that, and just lied to my new church), while snorting and wiping my nose. Lovely.

Everyone was so kind. The pastor even said that she had just this week spoke to someone about starting a special needs Sunday school. I assured her there was such a need for it. I'm sure there are plenty of families with special kids who could use the spiritual support of a church family -- not to mention an hour of real, literal peace.

If you attend some house of worship, I'd really love to know how it handles kids with special needs. If you don't know, could you do me a favor and ask someone? I have a couple of reasons for asking this favor: First of all, I'm curious about the various ways this is handled and looking for ideas. Secondly, I think that the more people ask this question, the more likely the issue is to be addressed.

I know most places probably haven't addressed the issue simply because they don't have any special needs kids in their congregation. But that's one of those chicken-egg scenarios. Maybe there aren't any families with special needs in the congregation because attending is just too hard for them.

Again, I'm not trying to give financially- and manpower-strapped churches, synagogues, and their ever-dedicated volunteers a hard time. Not in the slightest. If anything, most of us parents of developmentally challenged children really wish our kids could fit right in, without any special accommodations whatsoever. I hate the idea that anybody would think we expect them to remake Sunday school for Billy -- but would it be OK if he just walked around during story time, while listening, rather than having to sit perfectly still? We'll go with him. We'll keep him from dismantling the carefully put-together Lego Noah's ark and try to keep his singing contextually appropriate (he's just as likely to launch into "The Gambler" as "Jesus Loves Me").

Because let's face it: When it comes to spiritual growth, we all have special needs sometimes.

Reader Comments

Church with special needs child

HI Amanda. I have been reading your posts on Floortime yahoo group, so thought I would visit your site. (I also have a blog: http://wrighthappenings.blogspot.com) it seems like my son is almost exactly the same age as yours (4 in July) I like what you had to say about church. We attend one here in Seattle. The volunteers know he has autism, and he has actually always behaved himself, and can actually sit at the bible lesson and songs (I think preschool has helped with this) he has made progress in that room, and now doesn't tend to just go to the drawing table and line up crayons or draw numbers, but will actually parallel play with some of the other kids. There is only one other child with special needs that I know at the same church and she has global delays.
I am with you on having some church support with having a special needs child. Alot of my church friends don't really know what it is like though and I get more understanding from his therapists and other parents I know with kids on the spectrum. My son is good at memory verses, and he will say the same prayer before eating and we pray before bed. I try and bring Jesus' name up alot. As he moves up the developmental ladder (which he is) I pray that he can come to know the amazing love and grace of our saviour Jesus.

Thanks for getting in touch!

Hi Sarah ...

I'm so glad to hear that you have a supportive church community. I think there is room for education wherever we go -- and there couldn't be a better place to start than church. After all, most people there consider themselves a part of a "family" or should, right? And most, I'm sure, would be ready and willing to jump in to support if they just knew what to do.

I have a good friend with an autistic son and she has a great approach wherever she goes. If they're eating out in a restaurant, she asks the waitress, "Have you met an autistic person before?" Most times, that person gives her a funny look and says, "No," seeming to wonder why she asks the question. Then she gestures to her son and says, "Now you have."

I think that's a lovely way to expose people to the diversity of autism. Most people who haven't been touched by it, probably expect autistic children to be like Rainman or violent or impossible to work with. I think the people at the first church we attended saw one meltdown and figured that Billy was that way most of the time. When, in fact, he was only melting down because he was in a new place. Given a little time and understanding, he would fit right in.

After 10 minutes at our new church, he was actively seeking out other children, participating in coloring activities and singing along with the keyboard. Fingers crossed this continues!

Anyway, I'd love to keep in touch and get to know you and your family even better.

Take care,

Amanda

:)

hi Amanda :) Another fellow Floortime yahoo group member popping in to say hi! This is a topic close to my heart, so I thought I'd share my experience. We're currently in Los Angeles, and haven't found a new church home ... but before we moved here we were in Michigan at a Vineyard Church. I worked in Children's Ministry (infants/toddlers) for several years as well as working with special needs preschoolers (primarily low functioning autism) during the week. I began to see a need for a special needs ministry, or at least a way for parents to feel supported and able to attend church while their children were cared for. We had some kids that needed extra attention in the classrooms and the volunteer staff were overwhelmed. So I launched a small ministry, with a few volunteers serving as buddies for these children. These buddies could help avoid tantrums by playing with the child (positive attention! floortime options!), facilitating peer play, and also helping them attend during lessons.

I've heard of Special Needs Ministries in other churches too, but it's not widely available. You're right to point out that it's a bit of a chicken and an egg situation, I've had the same thought. I wonder what can be done to change that?

From Amanda

I LOVE the idea of a ministry of buddies! That would allow for an "inclusion" model in the Sunday school while still allowing the special needs kids to participate without interrupting the lesson for the other children.

Did you give the buddies any special training? Would you mind giving me an example, in the Sunday school environment, of how a buddy would handle a crisis?

Thank you so much for getting in touch and telling me about this. I'm going to talk to our pastor further this Sunday. I'm very excited!

Buddies

I just saw your reply on here Amanda. Thanks for the message back. Actually I wish my church was more understanding. I don't really consider my church a strong support with this, mainly I think as people just can't relate.

They don't have enough volunteers in his Sunday school group and sometimes there are just too many kids in there. I have volunteered in there myself, but don't do it every week. I love the idea of having a "buddy" for these kids, but as there is only my son and another girl I know that has special needs there, I doubt they would go for this. Though I could approach the head of the children's ministry and ask of course. It is really a good idea. Sort of like having an aide, who can help with including him with other kids etc.

That is really good to hear about your son seeking out other kids. Milo talks alot about other kids and notices them, but his ability to interact is still fairly minimal.

I noticed on your last post you said your hubby has an english accent. I am english, and Milo was born there. He has a strong accent. Where is your hubby from over there?

Anyhow, have a wonderful Easter day tomorrow!

Church with My Special Boy

Our son has not been diagnosed with autism because he is very high functioning, and the school psychologist is even on the fence if he really has autism or not. I think he has Asperger's personally, but what do I know? I'm just a mom. I am taking him soon to have a screening done, though. Going to church has become increasingly difficult for us. We have been attending a non-denominational church, and he has extreme difficulty staying in his seat for the whole service and refuses to go to Sunday school even if I stay with him. The last time we went there, the ushers tried to make me sit in the back of the church when I took him to the bathroom and let him go outside for a minute to get some fresh air and have a chat about staying in our seats at church, and he was running around in the foyer. I have to stay with my husband because we need to be a team in order to keep our son on track. One lady grabbed his foot as I was walking back down the aisle. I was so upset, I left my son with my husband and went back to the bathroom to cry. Then the usher tried to block me from sitting next to my husband! After church, the pastor sat down with me to talk, and she told me that God can help my son to have a full and good life. DUH! I don't doubt that. I'm only doubting that I can pay attention in church while constantly thinking about my son bouncing in the seat, and trying to provide snacks, books and toys to keep him from running the aisles and possibly bolting out the door. He gets upset when people he doesn't know touch him, so that was a bad experience for him also. Since then, I haven't been going to church at all because apparently we are a nuisance to the other people in church, which makes me REALLY sad. I miss being in a church. I know some people are going to say it's just an excuse, but seriously, don't go there. You should put yourself in someone else's shoes before jumping to conclusions. Going to a restaurant is also an extreme challenge, so we RARELY do that. However, no one at Friendly's tells us that we need to change our table or sit at separate tables because our son is disruptive. I am praying about this and would welcome any constructive suggestions that anyone has!

Total 6 comments

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