Joy and the Child with Autism

Don't get me wrong: I know perfectly well that every child, autistic or not, needs structure, limits, boundaries and direction.

But there's more to life than being appropriate.  And there's so much more to being fully human.

Stanley Greenspan, creator of the "Floortime" approach to autism therapy, says it beautifully on one of his weekly podcasts:

But how do we help a child become engaged? Now we are talking about pleasure and joy and excitement. We’re basically asking the question, “What makes our child happy?” Too long and too often, parents are told, mistakenly so, that the goals to get the child to do a specific behavior – to sit still or to put pegs in a board or to put this puzzle together or to repeat a certain sound or to imitate a certain word – but this is not the best advice. The best advice is, first and foremost, before you’re trying to “teach your child specific skills” is help your child learn to fall in love with the world; to become engaged with you; to not just love his caregivers but be able to demonstrate that love by coming up and giving mommy a hug and a kiss; by wanting to be with his caregivers. That’s going to help the child become a very good learner.

If our goal as parents is to help our children to become as fully human as they possibly can be, Greenspan has it right.  Our job is to help our kids to fall in love with the world. 

No one falls in love with rules, "life skills," "reinforcers" or "mands."

But everyone has the ability to fall in love.

What will bring the joy into your child's eye?  What will help her to "fall in love with the world?" 

Autism Awareness Day: A Puzzle Just for Fun

Just discovered a jigsaw-puzzle-making website. A perfect match for autism awareness!

Autism and the Library

Libraries aren't always easy for kids on the autism spectrum.  Public librarians are unlikely to have training in welcoming kids with special needs - and the written and unwritten rules of conduct are quite strict.  Unnecessary noise is a no-no.  Pacing, flicking, or other kinds of behaviors may draw nasty looks.

Yet the public library can be a wonderful destination for a child with autism when the situation is right.

It took us years to acclimate Tom to the library experience.  At first, of course, he was a toddler - and toddlers are generally invited to visit libraries for story time. Story time at the library is a carefully orchestrated event, often led by a volunteer parents.  Children are settled into a circle, where they're expected to sit - attentive and quiet - while they're read to for up to fifteen or twenty minutes.  For the child with autism - it can be excruciatingly difficult, if not impossible.

Later, library visits were tricky because Tom wasn't quite able to stay quiet...  might burst out with loud questions or noises at any moment...  and wanted to borrow the same books and videos over and over again (not a problem for the library, but an issue for me).

Over the years, however, we've persisted.  Two-minute-long visits grew into half-hour visits.  Carefully orchestrated interactions with the librarians have become more natural and comfortable.  Tom has his own library card, knows the librarian by name, and can enjoy a variety of events in the community room.

What made it work?  To start with, we came only for a few minutes at a time.  We allowed Tom to borrow one beloved video or book, and to try one "new thing."  As time went on, we began to read favorite books together, quietly, in the children's area.  We explored different libraries to find the setting, collection and staff that were best for our son.

Have you introduced your child with autism to the public library?  Share your ideas and successes!

Live Speaking Engagements: Get Out, Explore, Have Fun

I'm starting to set up speaking engagements to support the launch of "Get Out, Explore, Have Fun!" 

So far, I have three planned:

• May 21 Acton MA Childrens Museum
• June 2 Cape Cod Childrens Museum
• July 8 Autism Society of America conference in Dallas

Of course, I'll provide more detailed information on each of these events as they get closer.  Meanwhile, though, if you're interested in having me speak - in person or for a podcast, radio or TV - please get in touch!  This blog (and my Autism at About.com website) should give you a good idea of who I am, and the topics I can address.

Passion or Perseveration?

"Building on your child's passions" sounds like a wonderful idea.  Why not teach a train-loving child using books about trains, train-related math, history of trains, drawing trains, train music, and so forth?  Why not visit train museums, take rides on trains, practice social skills in train stations?

All of these ideas are terrific - provided your child's interest in trains (or legos or Pokeman or football stats or anything else) is truly a passion and not simply a perseveration.

What's the difference?

A person with a passion is interested in their subject.  They want to know all there is to know about, say, baseball or astronomy or legos or Manga.  A person who is passionate about trains may specialize in collecting N-gauge historic engines - but that same person will likely want to visit a local garden layout...  experience a ride on narrow gauge railway...  take in a train museum...  explore Grand Central Station.  The passion is a sort of portal into a whole world of possibilities related to the topic of interest.

A person with a perseveration simply wants to have the same train-related experience over and over again.  The interest is not in trains, but in repetition and familiarity.  Thus, a child with a Thomas the Tank Engine perseveration may be willing go to a train museum where Thomas will appear, but he's there for just one reason: Thomas.  He is unlikely to engage with the museum or the other trains, and even less likely to engage with the people at the museum.  In fact, he may have a very tough time indeed waiting for his turn to ride on Thomas - and an even tougher time leaving the ride.

Is it a good idea to support a perseverative interest?

The answer to that question is very personal.  From my own experience, I can say that supporting a perseverative interest in a limited fashion has been helpful - because even limited play is better than no play, and even limited exploration of the wide world is better than none. 

And I have found that, over time, perseverative interests can and do expand.  For example, where once Tom was interested only in collecting, piling and fingering legos, today he builds entire lego world and creates elaborate lego-based stories.  He's made his own purchases in lego stores, used his own library card to borrow lego books, and has begun to collaborate on lego creations with other kids.

On the other hand, I've heard from parents and therapists who feel that perseverations are simply distracting - and serve no really meaningful purpose.  And many people have found it best to set aside the perseverative object or topic for at least some period of time.

What's your experience with passions and perseverations?

First Review of Get Out, Explore, Have Fun

It will be months before the book comes out, but because Jessica Kingsley Publishing has already sent out galley copies, the first review is in.  Autism blogger "Whitterer on Autism" offers a really positive response to the book - highlighting its practicality and positive perspective:

Sometimes you read the title of a book and cringe inside – ‘great concept but how exactly am I supposed to do that?’ Lisa Jo fails to give me a glib reply – no, ‘how to fix it quick’ response, which is precisely why this book is readable, helpful and practical.

Lisa Jo gives us an in-depth and well considered approach to help us change how we think about some of the difficulties we face when it comes to ‘getting out and about.’ Her ‘no nonsense’ approach is refreshing and I particularly warmed to the underlying philosophy – yes all autistic children need education and some need therapy, but not to the exclusion of everything else that life has to offer....

Are you a blogger interested in reviewing the book before it hits bookstands?  If so, let me know and I'll try to get you a copy ASAP!

Autism and the Children's Museum

If you think getting your child with autism through the grocery store is tough, why would even consider taking your child to the children's museum?  In fact, you may discover that your local children's museum is a fabulous place for a child with autism.  Not only are there wonderful opportunities for your child to experiment, run, learn and have fun - but there are also rich possibilities for verbal and non-verbal play with other children or with you.

• Most children's museums include replicas of real-world settings, ranging from grocery stores to boats to doctor's offices.  What better way to practice appropriate behavior and skills than in a not-so-real situation where no one really worries about a child who tosses the cereal box across the room?
• Most children's museum include exhibits that allow children to collaborate on creative construction.  Even if you're only working on basic turn-taking, you and your child (or another little one) can work together to build castles, construct towers and more.
• Many children's museums include hands-on exhibits that allow for non-verbal collaborative experimentation.  Rolling balls down ramps, making bubbles, sailing boats and other activities are fun, require little conversation, but inspire kids to work on sharing, turn-taking, observation, prediction, and many other skills.
• Many children's museums offer opportunities for music and art creation. This may give you a great chance to find out whether your child has an interest or a talent!
• Almost every children's museum has an area where climbing, running, jumping or other types of physical activity are encouraged.  Often, indoor jungle gyms, climbing walls or other structures are built to improve coordination and strength - something most kids with autism need to work on.

Before you take off for the nearest children's museum with your child, though, there are a few issues to bear in mind.  Because your child is autistic, he or she may have more limits than the average child.  Noise levels, frustration, or lack of communication skills can make your visit more challenging.  To make the most of the experience:

• Consider getting a discounted museum pass from your local library.  That way, if you have to leave after a short time, you're not breaking the bank.  A membership can also pay for itself quickly.
• Go to the museum during "down" times (Sunday mornings, late on weekday afternoons, on lovely sunny days, etc.).  Do NOT go during school vacation, on weekday mornings (schools are visiting) or on Saturday afternoons.
• Prepare your child for the visit ahead of time with photos and information about the place you'll be visiting.
• Bring snacks.
• Have a plan for coping with sensory overloads, behavior issues, or meltdowns.
• Consider bringing a digital camera to record favorite exhibits, big smiles, and cooperative moments.  That way you'll be able to relive the experience with your child (and partner, therapists, etc.) - and plan an even better visit next time!

One last hint: many children's museums are now offering special times for special needs visitors.  It can't hurt to ask about such programs; you may find that special evening hours are ideal for you, your child, and the rest of your family.

Book Excerpt: Thomas the Tank Engine - a Key to Inclusion

How could your child's fascination for Thomas the Tank engine be an entree to community inclusion?  Here, in an excerpt from Get Out, Explore, Have Fun! are some thoughts on the subject.

For reasons yet to be fully explained, kids with autism are almost universally crazy about Thomas.  This may sound like a problem, but in fact it’s a terrific opportunity.  That’s because train museums around the world have embraced Thomas (the photo to the left shows two "real" thomas engines at the Midland Railway Centre in Derbyshire in the UK)– and going to the museum to actually ride on Thomas may be an ideal way to start visiting museums in general. 

In addition, Thomas trains are based on real-world engines that can be found in museums and even on tracks around the world.  Of course, kids who love Thomas may also love train spotting, visiting model train layouts, and even building model trains.  We’ve visited model trains at public gardens and museums, ridden trains in and out of major cities, gone to train museums and more – all because our son just loves Thomas the Tank Engine. 

Not only have these experiences been great for Tom, but they’ve given us a whole new area of interest that would never have occurred to us if our son wasn’t crazy about Thomas the Tank Engine.  In fact, along with Tom, my husband has now discovered the history of the Cape Cod railroad, ridden the Bay Colony Energy Train, located and photographed defunct and active train stations throughout the area, and even provided photographs for train-related exhibitions. Who would have guessed all this could come from a passion for Thomas Tank Engine?

 NOTE: The photo above is a Wikimedia Commons image courtesy of Duncan Harris. 

Band Night

When you have a homeschooled child with autism who plays the clarinet pretty well, it's quite a challenge to find the right place for him to play in an ensemble.  But it's always seemed to us that we should build on Tom's strengths, and if you have a kid who is a solid musician who enjoys the instrument and gets a kick out of playing with an ensemble...  it's seems like a no brainer that he should be a part of a band.

Ordinarily, kids who play in the band are not homeschooled.  And so far as we can tell, kids with autism almost never play in band.  So we're blazing some new ground, and hopefully making things a little easier for the next kid to come along.

No, he's not playing in the "big" band, since that meets during school hours - but for three years now he's been part of the after school "advanced" jazz band. Impressively, with some minimal support from the band leader and the outstanding teaching skills of a terrific clarinet teacher, it's gone quite well indeed.

In these photos, Tom is playing "In the Mood" and "Vehicle" as part of the middle school band (he's the clarinet player next to the girl with the saxophone).  This event was held at the high school, and included bands from the two middle schools and the high school - which meant that people we knew from every part of our lives were in attendance.

It was quite a night. 

Authentic Inclusion: What's That All About?

The word "inclusion" sounds simple.  In fact, though, it can mean many things to many people - which is part of the reason it's so tough to implement.  For example...

• There's "partial inclusion," wherein a child with autism is included for brief periods of time or in selected settings.  In school, partial inclusion could mean "inclusion only in math," or "inclusion only in music," etc.
• There's "full inclusion with support," in which the child with autism is physically in a setting with typically developing children, but expectations are modified and supports (such as an aide) are put in place.  Sometimes this works; just as often the child with autism is physically present but emotionally and intellectually absent.
• There's "reverse inclusion," wherein typically developing kids are brought into a special needs setting to provide role models and opportunities for building friendships outside the special needs community.
• There's "if you can handle it, you're welcome to take part" inclusion, wherein children with special needs are allowed to take part in anything they like, provided they can behave like typical children.  This type of inclusion is not unusual in school settings (he can be in band, so long as he can keep up with the other kids and doesn't cause any problems), and it's even more common in community settings (he's welcome to play Little League, so long as his skills and behavior are on par with the other kids).

And then there's something I'm terming "Authentic Inclusion."  Authentic Inclusion involves the selection of a typical activity in which the child with autism can fully engage with minimal or no support.  In Authentic Inclusion, the child with autism is not just physically present.  He's not simply tolerated and ignored.  She's actually and authentically a part of whatever is going on.

For some kids with autism, Authentic Inclusion must be very simple indeed. An hour at the beach...  a short walk in the woods...  a couple of turns at bowling.

For others, Authentic Inclusion can be much more.  In the photo above, you see our son, Tom, helping to paint the set for the local theater guild's big spring production.  He's not doing busy work or work that was created to provide an opportunity for inclusion.  He's not receiving hand-over-hand help, though he did get some instruction and direction. 

In fact, what Tom was doing was...  painting the set for the theater guild's upcoming production. Really. 

He was ready and able to do it, and so he did it.  The adults involved were delighted to have his help - really.  Along with help from his sister and Dad.  They were glad to have the help NOT because they felt good about doing the right thing for a "special" child, but because they were in need of helping hands in the theater.

Of course, there are jobs for which our son is ready, and jobs for which he's not yet ready.  I wouldn't put him in charge of hanging lights, or setting up the sound system... yet.  But as he's ready, we give him that little shove out of the nest.

What kind of Authentic Inclusion is your child with autism ready for?

Musicians and the Autism Spectrum

Music and autism seem to go together, though the reasons are not completely clear.  In fact, some people surmise that Mozart may have been diagnosable on the autism spectrum.  Quite a few people on the autism spectrum (including our son) have perfect pitch - the ability to identify a tone without any point of reference.  This is a wonderful gift for for any musician!

 

When he was five, Tom got his first music therapy session.  Since he was seven, he's been taking instrumental lessons.  Today, while he's no Benny Goodman, he's a workmanlike clarinet player, capable of playing as part of an ensemble.  Tom's the boy on the right in the plaid shirt; as you can see, he's playing right along with the rest of the band.

I can't say it's been a bed of roses all the way through.  It was tough to find that first teacher.  It's been hard to help Tom learn to read musical notation, attend to the band leader, or count rests and come in with the rest of his section.  But because he has a strong "ear," and can play almost anything he hears, some of it really does come naturally.

Does your child with autism have a musical gift? 

Got Crabs?

The simple pleasures in life are not beyond the means of your child with autism.  In fact, as we learned one summer in Sandwich, MA, autism can even enhance those simple pleasures.

Under this boardwalk, in the muddy tidal marsh, live hundreds of green crabs.  They're not good eating.  But toss in a hot-dog-baited hook on a line, and they're great fun to catch.  

Of course, it takes a little practice to hoist a crab up on a drop line.  And it takes a little patience.  For Tom (on the right), crab catching is a labor of love...  and no matter how often the surprisingly bright crabs let go of their hot dog on the way up to the boardwalk, Tom never loses sight of the goal.

On a sunny day, as we drop our lines, dozens of people may stop by to watch.  Occasionally our daughter, Sara, will lend them a line so they can try crabbing themselves.  And sometimes Tom will stop, watch, and applaud the biggest catches.  One day, while crabbing, it was Tom who noticed the big striped bass swimming around the tidal pools ...  and it was Tom who saw and recognized the ribbon eel under the dock.

At high tide, the water comes within a few feet of the boardwalk.  When that happens, scores of teens and tween show up to leap into the cold Cape Cod Bay, and swim back to the ladder or the shore.  Tom was among those who thought leaping would be fun, and he did.  Unfortunately, the tide carried him in just the wrong direction - away from the boardwalk.  Fortunately, he didn't panic, nor did the big boys who jumped in after him and hauled him back!

We make this boardwalk a special destination, now.  And at least a few times every summer we bring our bucket, our lines and our hot dogs.  For all of us (and not just for Tom), it's an occasion worth waiting for.