New Book in the Making on "Welcoming Families with Autism"

I'm excited to let you know that I'm going to be writing a new book, due out next October from Jessica Kingsley.  The title is yet to be determined, but the intent is to provide community organizations (everything from ball clubs to museums to conservatories) with the information, models, troubleshooting ideas and fundraising resources to include kids, teens and families with autism in their programs and events.

Much more on this soon - I'll be needing your help!

Why I Wrote "Get Out, Explore and Have Fun!"

Lisa Jo Rudy is a professional writer, researcher and consultant, and the mother of a 13-year-old boy with an autism spectrum disorder. Since 2006, she has been the 'About.com Guide to Autism', a part of The New York Times Company. Lisa has more than twenty years of experience in developing hands-on exhibits, interactive games, books and activities for kids with every learning style. She is passionate about creating opportunities for young people to build on their abilities, strengths and passions. Lisa has founded an inclusive summer program for children with autism in collaboration with the YMCA, written articles on inclusion for museum professionals, presented workshops on the subject, and is working toward development of related programs for the future.

Here, Lisa answers questions about her new book Get out, Explore, and Have Fun! How Families of Children with Autism or Asperger Syndrome Can Get the Most out of Community Activities.

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Q: What motivated you to write this book?

My husband and I have always worked in the non-profit world – the world of museums and zoos, science, art, theater and education. We've met people who make their livings building haunted houses, showing the night sky to children, diving under the sea and investigating the mating habits of snails. We've seen kids on and off the autism spectrum (some with significant challenges) join dinosaur digs in Montana, play first clarinet in a regional orchestra, tutor typical peers in a foreign language, show horses, sell their paintings and much more. We've read the extensive research that says people learn in many ways, and express what they know with or without the use of spoken language. We know that getting out, exploring and having fun is not only critically important to full and happy life – it's also a way to build self-discovery, personal growth and bonding into the lives of children and families living with autism. It's time to get out there and make it happen!

Q: You see getting out and exploring as an extension of learning, as well as having fun. How do autistic children learn differently when they are out and about? What lessons can educators of inclusive classrooms learn from the book?

When kids are in school, they are taught with words, tested with words, and judged on their ability to use words successfully. The problem, of course, is that kids with autism by definition have a difficult time with both making sense of and expressing themselves with words.

Fortunately, there are many, many other ways to teach, learn, and show others your abilities. You can use your eyes, ears and hands. You can sing, play music, paint or swim. You can build a model castle, create a computer program, or ride a horse. Unfortunately, schools very rarely take advantage of the million and one non-verbal techniques for teaching or learning – and of course standardized tests make it even tougher.

My hope is that this book – and many other projects I’m involved with – will help teachers, administrators, consultants and researchers to investigate and make use of techniques used in informal settings (and the research that has already been done around the success of informal education for all kinds of learners) when they plan their lessons. Could their students learn through hands-on experimentation? Through physical exploration? Through artistic creation? Could their students express their learning through theater? Music? Or engineering design? We already know that the answers to these questions is "yes" – the challenge is to ensure that kids on the autism spectrum get the opportunity to benefit from what we already know.

Q: How do family units benefit from getting out and exploring?

Autism can be an incredibly isolating disorder. Not only do parents wind up spending a huge amount of their time, energy, money and love on therapies and care – they also feel like outsiders in their own communities and families. It can be even worse for siblings who, through no fault of their own, are often excluded from ordinary activities. By getting out and getting involved in the community as it's possible, families are able to reconnect with clubs, churches and synagogues, sports leagues… and often with their own families. Another huge plus for getting out into the world with a child on the autism spectrum is that families discover their child’s real strengths and abilities in ways that would never be possible in the school or therapeutic settings.

Q: For a parent, a tantrum on the train or a punch on the playground can sour the idea of future excursions. What are your tips for recovering from a 'bad day out'?

The best way to manage a bad experience is to already know, in advance, what you’re going to do when it happens. Autism parents know that it's almost impossible to control for all possible issues, and to guarantee success. On the other hand, it's very possible indeed to have a Plan B already in place.

Instead of taking a group of kids to the playground with one adult in charge, for example, have two adults along. That way, if an incident occurs, it's easy to step in, end the experience, and leave the situation – without disrupting the group's day out. At a zoo, the best choice may be to buy a low-cost membership, so that a shortened day at the zoo feels less like a failure and more like a … short day at the zoo!

Bottom line, it will always be a challenge to involve your child with autism in typical community activities. Planning and flexibility – along with a thick skin and a sense of humor – can make all the difference.

Q: What advice would you give to a parent who want to get out and explore with their autistic child, but may have limited time or resources?

Start small and simple. If your child loves animals, visit the pet shop. If your child enjoys music, go listen to the town band for a little while. Take a short walk in the woods, plan a half-hour at the local pool, or pick some apples at the farm. Don't spend much money, don't commit a lot of time, and don't inflate your expectations. If you have a great five minutes, you're ahead of the game!

If you're really nervous about getting out in public with your autistic child, and you want to hand the reins over to someone else, you might want to consider some of many "special needs" community options that are available. True, Special Olympians are unlikely to compete at a world-class level – but the experience of building skills, friendships and self-esteem can be a stepping stone to many opportunities in the local community and beyond.

Of course, you also have the option of exploring and having fun at home – and that's an absolutely reasonable option for many families. Whether you're dancing together to your favorite CD, playing a video game, or just playing "tickle me," you’re enjoying each other's company. And that's a huge step in the right direction!

Copyright © Jessica Kingsley Publishers 2010

Get Out, Explore, and Have Fun! is a guide to what's out there, how to find it, and how to make it work for your family. The book includes hints and tips for involving your family in the right community activities, from sport to science; information on museums, arts organizations and science institutions as venues for an enjoyable and enriching day out for the family; and resources and ideas for helping your child build on their strengths, interests, and preferred learning styles to explore life in the community.

Click HERE for more info about the book.

Visit www.lisarudy.com for more info about Lisa and her work.

Lost and Found at the Grocery Store: Small Steps to Competence

When Tom was seven, we went to the library.  The children's library was downstairs, while the adult books were on the second level.  Somehow I thought Tom was right behind me when I headed upstairs -- but he wasn't.

Of course, we were reunited within just a couple of minutes, but the sense of anxiety and loss has stuck with him all these years.  As a result, it can be very tough for Tom to be on his own in a public place, out of sight of mom or dad, even at the age of nearly fourteen.

To help him develop the emotional skills to manage being out of eyeshot, we've been practicing in the grocery store.  We've developed a whistle to say "here I am!," and today Tom practiced heading up an aisle and out of view, and then whistling back and forth with mom.  A little later, I sent him to find a product in the next aisle, but we kept talking throughout the process.  By the end of the shopping trip, Tom was able to head back to the produce aisle to get a less-squashed bunch of bananas while I continue to place items on the cashier's counter!

This type of step-by-step approach isn't actually managed in a day.  We've been working toward grocery-store independence for months...  sometimes in visual range, sometimes not.  Each time, we've talked about the issue of anxiety, about strategies for finding me (whistling, calling, asking a staff person for help), and each time the anxiety has been just a bit less.

No, we still can't send our almost-fourteen-year-old around the corner for a quart of milk.  But step by step, that possibility gets closer!

New Reviews of "Get Out, Explore, Have Fun" Explore the Complexity of the Autism Community

Today, new reviews of Get Out, Explore and Have Fun by blogger Kim Wombles and parent/advocate Stan Jaskiewicz (who is quoted in the book) highlight the reality that it's not always easy to find one's place in the autism community.  All too often, we are swayed by the expectations of others, or by the sometimes-ferocious politics within the autism community itself.  How do you rise above the noise to find a direction that works for you and your family?

Here's what Stan - a tireless advocate and hands-on Dad - suggests:

In my advocacy in various contexts, such as religious education or adaptive sports, I have tried to provide a consistent message to parents of children with disabilities. Don't assume your child can't do something because of his or her autism - you may have to provide accommodations, be involved yourself as a leader to facilitate your child's participation, and plan the event intensively, but your child is capable of many great things.

Kim, a dedicated autism blogger and mom, has for many years been a major voice in the autism controversies that seem to grow more heated and polarized every day.  In her review of Get Out, Explore, however, she notes that she's found more common ground than she anticipated:

...I’ve communicated more over the last year with parents whose beliefs regarding their child’s autism run the gamut and yet somehow, we’ve managed to fairly easily work together to try to advocate for others in need and to forge friendships, as well, based on the mutual desire to make the world a better place for our children. It’s refreshing and heartwarming to realize that we have common interests that rise above the questions of causation.

Read Samples from "Get Out, Explore, Have Fun!"

Curious what's inside Get Out, Explore, Have Fun?  I'm pleased to say that I've placed samples from the book on my website.  But if you want a taste right now, here's just one of the three excerpts I've posted:

Exploring Your Options (Yes, you have options!)

Today, the YMCA, Boy and Girl Scouts, museums, and an incredible range of community and private programs are very aware of the huge rise in kids with “special needs.” Fewer and fewer program directors are likely to say “We can’t help you” when you mention a developmental delay or even an autism diagnosis. And more community groups than you’d expect have actually gone out of their way to learn about and provide supports for kids with autism, ADHD, and similar developmental differences.

The problem is that too few parents, teachers, therapists, and support groups are aware of how things have changed—not only for our kids with special needs but for families overall. There’s much more openness to special needs families, if for no other reason than the fact that we now make up some 15 percent of the family market overall.

And it’s also much more acceptable than ever before for parents to take an active role in their child’s informal learning experiences. Parents hang out and take part in arts programs; they attend every athletic practice; they camp out along with their young Boy and Girl Scouts; they attend every meeting of YMCA Adventure Guides. As the parent of a child on the autism spectrum, who needs you by his side, you’re not as unusual as you may feel.

Teaching Kids with Autism: Words are Not Enough

Chances are, if you have a child on the autism spectrum, he or she learns in many different ways.  She may learn visually or aurally.  He may learn through hands-on experience, through music or through nature.  But the fact is, most kids with autism do NOT learn well through conversation, lecture, or reading aloud. 

There's a simple reason for this: autism, by definition, involves language and communication deficits.  Even people with Asperger syndrome can have a tough time interpreting the underlying meaning of words, stories and tone of voice.  People with moderate autism take a longer time than most to interpret and respond to spoken or written words, and may find it challenging indeed to make sense of implied or symbolic meaning.  Of course, people with no spoken language at all will find it nearly impossible to learn entirely through words.

Unfortunately for our kids, schools (after preschool and kindergarten) teach almost exclusively through the use of the spoken and written word.  Children with autism, when they're included in general education classrooms, must grasp teachers' directions instantly, and respond within seconds.  If they don't they're quickly left behind.  Even with an aide, kids simply can't process and respond to verbal cues as rapidly as their typically developing peers.

Fortunately for our kids, however, schools aren't the only place where our kids can learn.  In fact, throughout history, verbal skills have only been a small part of the picture.  All around the world, kids learn by watching, imitating, trying and doing.  They learn through apprenticing, modeling, and direct instruction.  Whether they're learning to care for critters, use a paintbrush, zip their pants or hammer a nail, words are only a very small part of the teaching and learning equation.

How does your child with autism learn?  Where might he find instructors who teach as he learns?  Think outside the box of school, and consider the wide world of informal education.  Might your child learn best with whole-body experiences - through athletics, dance, martial arts or tumbling?  Through hands-on experiences - through exploring a nature center, fishing off a pier, or sculpting with clay?

The world is a very big place, and the possibilities are endless.  School and word-based learning are not enough.

In the photo: Tom Cook meets Peter the Rabbit at the Greenbriar Nature Center in Sandwich, MA.  Following this class, our family became volunteers at the center.  All four of us (sometimes with friends) fed and exercised the tortoises, turtles, hedgehog, guinea pig and rabbits once a month for two years!).

Autism and Claud Monet

Spurred on by a fascination for a Disney cartoon for young children called Little Einsteins (a program created to introduce kids to fine art and music), our son developed an interest in the impressionist painter Claude Monet.  Whenever he saw a library book about the painter he'd borrow it...  whenever he saw a print of the Waterlilies, he'd point it out.

Last year, building on Tom's interest, we did a homeschool unit on the impressionists.

We started with a set of BBC videos created specifically to introduce viewers to each of several French impressionists - and we learned an awful lot about where the term "starving artist" came from.  We read a children's book called Linnea in Monet's Garden.  We read about the artists, finding books that included full-color prints.  And, of course, we painted.

Most of what we did took place at home.  But the Big Field Trip was a trip to New York's Metropolitan Museum of Art.  There, in one of the museum's huge galleries, hangs the REAL Waterlilies...  and over a dozen other original Monet's.  There are Cassatts, Gaugins, Cezannes and Manets too - all of whose work Tom knew from the videos and books.

True, sister Sara (who prefers soccer to museums) was bored.  But for our son with autism - it was a great adventure.  As it was for his mom and dad.

Interested in taking your child with autism to the Metropolitan Museum of Art?  They offer special programs for kids and adults with disabilities, with a unique offering called Discoveries just for people with developmental and learning disabilities.  Don't miss it if you're in New York!

Autism in the Community: Making it Work

It may sound a bit odd to call a book about autism “Get Out, Explore and Have Fun.”  After all, autism is a disorder – and for most parents, getting out and exploring is hardly the first priority.  But the fact is that, while therapies and school are important, getting out and exploring the community with your child on the autism spectrum may be even more important.

Why?

There are a few big reasons, and a thousand smaller ones.  The biggest reasons, of course, are your child; your family; and your community.

If you have a child with autism, you’re probably barraged with information about your child’s challenges…  and you’ve probably heard very little about his abilities.  But if think about it, your child with autism is being asked to learn in the world’s most difficult setting: school.  He’s asked to work with words all day long – something that’s tough for every child on the autism spectrum. 

In fact, though, we KNOW that people learn in many different ways – through their eyes, their hands, their ears…  through music, and through their whole bodies.  Plenty of researchers have done the work to prove it, and of course you already know all about non-verbal learning.  No one TALKS swimming to death – they get in the pool and work on swimming skills.  No one expects a musician to describe music – they just need to play, or sing. [This kinds of learning is called “informal education,” and there are journals of all sorts out there that document the reality that hands-on, bodies-on learning really works.

Your child with autism needs and deserves the opportunity to learn and express her abilities outside of school and outside of therapies.  Maybe she’s wonderful with animals.Maybe she’s an outstanding visual artist.  Maybe he can learn to play the piano.  You’ll never know – and neither will your child – if you spend all your time in little rooms, practicing skills, language and behavior.

In fact, your child with autism may even become a real asset to organizations in the community.  In writing my book, I’ve learned about kids on the spectrum who have become language tutors…  winning athletes… and prize winning artists.  my own son has become a solid clarinetist, and a member of the local advanced jazz band.  These aren’t just make-work opportunities :our kids on the spectrum are authentically included in real-world programs, activities and events.

And what about you and the rest of your family?  Many moms of children with autism and depressed, many marriages are stressed, and many siblings are frustrated because so much time, money and energy are spent on therapies – and on worry.  But if you’re willing to take a little time to get out and explore as a family, you may it’s not as tough to have fun together as you thought. 

Even if your child with autism can’t sit through a full-length play – yet - there’s a good chance he can enjoy a hike in the woods, an hour in the pool, or an afternoon at the beach.   And there’s an excellent chance you can enjoy those things together.

Then there’s the community.  How can the community benefit from opening the doors to your child with autism?  There’s more in it for them than a feeling of having done the right thing.  If your family decides they can enjoy the zoo together, won’t you be likely to become a member?  If you’re impressed with the zoo’s willingness to support your child, you might even be interested in giving to the annual fund.  And if the zoo decides to create a special program for kids on the spectrum, they may well be eligible for special grants.  With autism at 1:100 kids, community groups can no longer afford to keep the doors closed – and that means the YMCA, the Boy Scouts, and many other groups are already out there creating better ways to make our kids welcome.

My new book, Get Out, Explore and Have Fun is a guide to finding, creating, supporting and even funding community opportunities for your child with autism and your family as a whole.  You’ll find info, tips, and even materials to copy and share with coaches, instructors and clergy.  I’ll be honest: authentic inclusion isn’t always easy, and it’s rarely worry-free.  But when it works – and it will work – you’ll be astounded at what your child can learn, be, and do.

Brett Miller's Review of Get Out, Explore, Have Fun

Thanks, Brett Miller, for your review of an early galley of Get Out, Explore, Have Fun on "Good Reads." A short excerpt:

If you are the parent of a young - or not so young - autistic child, you should get and read this book. And give a copy to your child's teacher, their IEP case worker, the IEP team.

Life is for living, even for an autistic child, and this book reminds us why this is true and how to make it happen.

Bowling and Autism: Making it Work

Bowling and autism?!

Bowling takes coordination, arm strength and patience, involves a good deal of loud noise, and takes place in a location where strong smells and florescent lights are the norm.  Sounds like the last sport a person would autism would take up.

Yet over and over again I've seen kids and teens with autism thrive in bowling allies.  I'm not sure what it is about the sport...  maybe it's the repetition (get up, bowl, sit down); perhaps its the fact that there's no need for non-verbal communication among team members.  Or maybe it's just fun!  Whatever the reason, bowling is well worth exploring with your child on the autism spectrum.

Here in New England, we do have ordinary ten pin bowling.  But we also have another sport we like even better: candlepin bowling.  What's so great about candlepin?  The balls are light and can be held in the palm of the hand.  You get three chances to bowl as opposed to the usual two.  And the "dead wood" (fallen pins) become a part of the game.  It's like a cross between ten-pin bowling and bumper pool!

If you do decide to go bowling here are a few tips to bear in mind:

• Spend a little time ahead of time watching bowling on YouTube or TV, so your child knows just what to expect.  If you can, write a social story that includes the details: changing shoes, being assigned a lane, choosing a ball, etc.
• Reserve a lane in advance, so that you don't arrive and then experience waiting-room melt downs.  Ask, too, if stocking feet or other shoes are ok for bowling, just in case your child rebels against bowling shoes.
• Ask for bumpers - those rubberized strips of metal that keep balls moving down the lane.  Gutter balls are tough enough for typical bowlers, but may be even more frustrating for kids with autism.
• Bring a snack.  There's a good chance that the food available at the alley will NOT be your child's favorite (and it most certainly won't be gluten free!).
• Have a plan B in mind.  If you your child really doesn't take to the sport, that's okay - but it's best to come prepared with another possibility "just in case."
• If siblings or other kids come along, be sure there's a second adult available to manage if your child with autism needs extra support.
• Keep it light.  If your child is having a good experience, it really doesn't matter if his form is right or his score is high.  If two-handed bowling works better for her, go for it!  It's all about getting out and having fun; winning can come later (or it may never be a concern).

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.

Autism on Horseback

If you've seen or read anything about Temple Grandin, you know she's an autistic adult with an incredible connection to animals.  Grandin isn't alone: many people on the spectrum connect strongly with animals.  Even so, though, I was a little nervous when I took Tom and his sister to a local stable to try horseback riding. 

That was five years ago.

Since then, while we haven't gotten into competitive horseback riding, we did send both kids to the stables little "animal farm" camp - where, for the very first time, Tom was successfully included without support.  One huge reason for this was Scoobie, the pony he got to ride and curry every day.  There were other lovable critters too: bunnies, puppies... though the sheep, with their loud baaahs, were NOT a big hit.

Other families have gone much farther than we have in connecting their autistic kids and horses.  Some families start with hippotherapy - horseback riding therapy - which helps riders work on non-verbal communication, physical strength and coordination, and self-esteem.  Other families have found that ordinary riding stables are a wonderful place for their child with autism to grow and learn.

Share your equestrian story!

Best Sports for Kids with Autism

Not every kid loves soccer.  Yes, it's true, and I'll say it again: not every kid loves soccer.  But don't let your child's difficulty with team sports turn you or your child away from sports or physical fitness!

For kids with autism, team sports like soccer, football, hockey and basketball can be excruciatingly difficult, as they combine non-verbal and verbal communication, face and "mind" reading, complex physical coordination, and a clear grasp of what it means to be a good team member. 

Unless you've found a very supportive coach or a terrific special needs league, you may be worried that your child will grow up to be a couch potato.

But the world is full of ways for your child with autism to have fun and get fit - even if he never really grasps the fine points of heading a ball or passing to a team mate.  Instead of pushing the team sports, consider expanding your horizons to consider the incredible range of sports available to people who are NOT team players.  What are some of the top options? 

Consider...

• Swimming.  This terrific whole-body sport can be enjoyed alone, with the family, or as a part of a team.
• Bowling.  Simple, repetitive and satisfying, it's also a great sport to enjoy in a group or alone.  Leagues are great, too!
• Track and Field.  In the US, track and field is usually reserved for older kids, but kids of any age can learn to run, jump, throw and hurdle.  Even if there's no coach or team in your area, you can always use the high school track during off hours.
• Hiking.  Just like plain old walking, but it's considered a sport if you hike in the woods, heading for a picnic spot or cool lake.
• Martial Arts.  Many kids with autism enjoy the repetitive discipline of martial arts; choose the particular style (judo, tae kwon do, karate) based on the quality of the instructor.

What sports does your child with autism love?  Share your thoughts!

Does Fear of Failure Keep You From Exploring with Your Child?

Over the years, I've had plenty of disappointing, even embarrassing moments with my son on the autism spectrum. 

It all started at Gymboree.  No, he wasn't the only two-year-old who wanted to keep playing on the equipment when all the other kids and moms made a big circle and started to sing.  But he WAS the only kid who flat out refused to do anything at all with other kids (except pop bubbles).

Sure, the leaders told me this happened all the time...  But I'm not dumb.  Looking around, I could see that Tom was the only one out of a dozen kids that either wouldn't, or couldn't, participate.

I didn't give up on including my son in community activities after Gymboree...  but the truth is, I was nervous.  I watched him on the playground, dribbling dirt from his fingers rather than playing tag, and I worried.  The autism diagnosis helped me understand his issues - but it didn't help me to feel more comfortable with the stares or pity I imagined I'd receive from my own peers.

It took a lot of expermenting with different settings and activities - and growing a fairly thick skin - to get past my fear of embarrassment or my anger with those who seemed to pity me and my son.  But the process has, overall, been a good one. 

Yes, he did have a tough time managing a general swim class at the YMCA - but after a few false starts, he did it!  Today, he's a solid swimmer with no fears or disabilities in the water.

Yes, it was tough finding a clarinet instructor to work with a kid who liked to stuff toys into the instrument...  but after a lot of searching - and a lot of patience on the part of a creative young instructor - we discovered that our kid has real musical talent.

Does fear of failure keep you from exploring with your child?  How did you get past it (or are you still there)?

Why Get Out and Explore with Your Child on the Autism Spectrum?

From the book:

Unlike therapeutic settings, in which artificial interactions are set up based on external goals, people in the real world interact over true mutual interests. Kids with autism, in the real world, can share their true interests with people who really, honestly care. Where there are real shared interests, there's real engagement… real interaction… and real learning. Where there's real learning and understanding, there's real respect. Where there's respect, there's the possibility of responsibility, leadership, and growth.

Whether your child with autism is verbal or non verbal, whether he loves dinosaurs or baseball, there are other people out there with his passions. Not every setting is ideal for every child, and it takes work to find the right place, the right people, and the right situation. But when you encourage a child with autism to explore the world outside of school and therapy - the results can be extraordinary.

Autism on the Playground

Playgrounds are often a tough venue for families with kids on the autism spectrum.  While climbing and running may not be too much of a challenge, sharing and managing social equipment like the seesaw can be very challenging indeed.  It can also be tough to explain exactly how to manage complex actions such as pumping on a swing or pushing off on a seesaw.

It turns out, though, that practice and visual tools can go a long way toward helping a child on the spectrum to develop the skills he needs to make the playground a positive experience for everyone. 

A few years ago, my husband and I (with help from our kids) spent hours on the playground creating visual teaching tools to help parents of kids with autism learn to play.  Our daughter Sara was very into it; with her help our son Tom was able to not only learn but also pose for poster photos!

If you're interested in this full-sized, full-color poster (or the "swing" and "slide" posters) let me know: they're available for a very reasonable price!

Ready to Launch

What does it take to raise a child with autism?  It's no easy challenge, for parents, for families, or for kids on the autism spectrum.  It's my opinion, though, that the challenge is made far greater when parents believe that their child has no place in the wider world.

In fact, people with autism may think and act in surprising ways...  and every person on the spectrum has unique challenges.

But at the same time, every child with autism has his strengths and abilities.  And the world is slowly but surely opening itself up to welcome kids who learn, think and act differently.

What can your child with autism do?  How can you do it with him?  How can you, your partner, your kids and your child with autism get out, have fun and explore the world?  In this blog, I'll be offering answers to some of those questions - and asking for your help along the way!