Trip to Wonderful

Monday, February 28, 2005

Guilty of the sin of cross-posting...

Okay, so I won't actually cross-post, but link to this piece I put up on Wampum a few hours ago. Although much of it is a reaction to the planning of our trip, since the message is directed at those who are not parents of autistics, putting it here would in all probability defeat the purpose.

Special Needs Vacation Tip #3: Amusement Park Discounts

While Disney has yet to jump on the bandwagon, many other large amusement park chains offer significant discounts to special needs individuals and their families.

Busch Gardens parks, which include SeaWorld, Discovery Cove, Water Country, Adventure Island and Sesame Place, offer 50% off one day tickets for disabled/special needs individuals and one companion. We learned of this program two summers ago when we visited Sesame Park in Pennsylvania. After our trip to Disney where we learned of special assistance passes which allow expedited access to rides and shows (NB: this program has changed significantly at Disney and I'll be posting on that soon), we decided to ask if other amusement parks had similar programs. When I inquired at the ticket counter, not only was I provided with the special needs passes, I was informed of the discounted rate.

Since we have two children with autism, such discounts are significant. A single day adult admission for Busch Gardens is $49.95, $42.95 for kids. This isn't just a feel-good perk: While many neurologically exceptional children thrive in the intense stimulation of theme parks, for some, the sensory overload is too much, and a day planned at the park turns into a couple of hours.

Most private parks, concerned about potential ADA litigation, do not require documentation of disability. This, of course, has led to significant abuse by non-disabled visitors looking to save a few bucks. The abuse of the Guest Assistance Program at Disney's parks led to the changes in their policy, much to the detriment of those who depended upon the policy to have a successful vacation experience. I suggest, however, that in order to counter the perception by park staff that the discount policy is being abused, especially in those with "invisible disabilities", parents should offer a note from the child's pediatrician or neurologist. Most times the staff won't want it, but the fact that you're willing to provide it cuts back on negative perceptions which might lead to policy changes in the future.

I've read reports of other theme parks (Marineland, Six Flags) offering some form of disability discount, but I have not been able to confirm this information at this time. I'll contact the parks directly and post updates as they come in.

Sunday, February 27, 2005

Change of plans

I've been working on a post on traveling and dining with children with special diets, an issue close to our hearts as Sam has been gluten-free (and mostly dairy-free as well) since he was 21 months old.

However, I never realized how much information is out there, but on a zillion different sites, with no one site offering a complete picture of dining out with kids with dietary restrictions.

So I'm putting off that post while I do a better job of compiling the information. I've also emailed a number of companies requesting further detail on their policies.

So now I'm sending the Googling monkeys off in a new direction. Stay tuned.

Saturday, February 26, 2005

Welcome addition

I think I've been able to sucker, er, convince my dear friend Emily to contribute some of her extensive knowledge to this new endeavor. Emily has a neurologically exceptional child who is doing incredibly well (can one say "almost indistinguishable"?), due mostly to Emily (and M.'s) hard work.

I know that Emily is a font of information on vacationing with a high functioning child, as well as being the goto person for all-things-NYC/LI and, of all things, Dude Ranches. Now, not a chuckle. If there's any single family resort that spectrum kids, with their host of sensory needs, will love beyond a doubt, it's the good old fashion dude ranch.

Now I need to figure out how to allow addition authors again on Blogger. Yes, we are moving to WordPress on our Wampum server sometime soon (Eric, buy the *&^%& domain name), with a PHPBB forum and all, but for now, I'm working off two year old knowledge here. Bear with me.

The Plan (Version 1.1)

So, The Plan (Version 1.0) has already changed a bit. We're no longer 1) setting a time limit, e.g. three months, 2) will visit our potential new residence locations at the end of the first leg, and 3) will in fact travel through the Deep South, though in the slightly cooler autumn months (okay, so I did a bit of research on poisonous snake fatalities.) The US is far too large to see in Ms. Pacman mode, chopping through attractions at a whirlwind pace.

We're also looking today at slightly larger pop-ups. Turns out that a camper with bathroom and shower facilities (along with a kitchen and sleeping quarters) qualifies as a home (for tax purposes.) The freezer in the larger PUP has some appeal as well - less hunting for fresh sources of Sam's favorite gluten-free chicken dinosaurs and donuts. (Ah, there's fodder for our next post.)

Like vacationing in the wilderness, but don't want to camp?

While our plans include towing a 17ft pop-up through hill and dale and camping in more "primitive" campgrounds, that's not for everyone. However, the benefits for family of neurologically exceptional children of a vacation which eschews the regular musuems, amusement parks and high-scale hotels are many. No pushy crowds, no florescent lights, no loud music. No worry that Junior's desire to bounce off the walls at 3am might just result in a knock on the door from hotel security.

When we took our first non-beach camping trip with the kids, I thought they might be bored just hanging out in the woods. Little did I know that the tiny creek which ran by the side of our site could keep them occupied for hours. That scaling and running down the small hill which formed the opposite camp boundary provided more joy and energy release than even Disney himself could offer.

Well, for those who desire these idyllic conditions but don't want to rough it in a tent or camper, many state and national parks and public lands offer rustic cabins for rent.

Most National Park and Forest Service cabins must be reserved, unlike a lot of "first-come, first-served" campsites. The federal government has contracted with Reserve USA for this service. Unfortunately, the website, while adequate, isn't all that helpful discerning those states which actually offer rental cabins. It's essentially a hit or miss exercise on a state-by-state basis.

Many state parks around the US also provide cabins for rental on daily or weekly terms. In my research on the subject, I found Virginia's State Park cabin and campground website, which was spectacular. Not only does it provide pictures, rates (3 seasons, VA resident or out-of-state) and description of locale, but physical layouts of the different cabin types are available as well. In the next few weeks, I'll spend some time pulling more state park resources for the sidebar.

If the rustic charm of public cabins aren't your cup of tea, there are thousands of private cabins for rent around North America, many to be found at USA (back up a level to see worldwide resources.) State-based tourism organizations also may provide detailed private cabin information and reservations.
Ohio Parks is an example of such a site, but it should be noted that these private properties are generally significantly more expensive than state and national park cabins.

Each cabin is different, so you'll need to check ahead of time to see what you need to bring. Some National Parks facilities are very basic -- essentially the equivilent of a tent made from logs -- no indoor cooking or bathroom facilities. Others provide a few more modern ammenities. All, however, offer families the wonderful opportunity to explore America's pristine habitats, but with a lockable door sufficient to keep bears out, and curious children in.

Tuesday, February 22, 2005

Feeding the fixation

I began this post a few days ago, and was pleasantly surprised by the serendipitous interview with Temple Grandin I came across this morning in the Schafer Autism Report. When asked about a statement in her book regarding fixations, Grandin replied,

Let's say that a child loves trains -- that's a very common fixation. Well, read a book about trains, do math problems with trains, read about the history of the railroad. In other words, if a kid loves trains, you can somehow drag a train into just about every subject in school to get him motivated to study it. Fixations are tremendous motivators."

Jonah love trains. Or, I should say, he loves train tracks. He builds extremely complex, often raised, rail systems out of his Brio tracks and a variety of supports, including cans, toys and lumber scraps.

Sam's interests, however, are zoological rather than mechanical. Well, paleozoological. He loves dinosaurs. A child who seldoms speaks more than a few words at a time, he can name over a hundreds different species of dinosaurs and terasaurs.

So we plan on taking Dr. Grandin's advice and feeding Sam's fixation with creatures which have not roamed the earth for hundreds of millions of years. Fortunately, a few hours searching turned up quite a smorgasborg of dino-offerings. We could plan our entire trip just paleo-hopping.

Dinosaur State Park (Connecticut)

Museum of Natural History (New York)

Dinosaur Beach Adventure Theme Park (website coming soon) (New Jersey)

Carnegie Museum of Natural History (Pennsylvania)

Old Pro Golf Dinosaurs! (Maryland)

National Museum of Natural History (Smithsonian) (District of Columbia)

Dinosaur Land (Virginia)

Fernbank Museum of Natural History (Georgia)

Dinosaur Adventure Land (Florida)

Disney's Animal Kingdom (Florida)

Dinosaur Valley State Park (Texas)

Dinosphere @ Children's Museum of Indianapolis (Indiana)

The Field Museum (Illinois)

Cleveland-Lloyd Dinosaur Quarry (Utah)

The Wyoming Dinosaur Center & Dig Site (Wyoming)

Dinosaur Ridge (Colorado)

Dinosaur National Monument (Colorado)

Denver Museum of Nature and Science (Colorado)

The Dinosaur Museum (Utah)

Dinosaur Discovery Center @ Knott's Berry Farm (California)

UC Museum of Paleontology (California)

Prehistoric World (Ontario)

Of course, sometimes you have to truly feed the boy, not just the fixation:

Dinosaur Bar-B-Que (New York)

If you have information regarding these dino-features, please share in comments below. Also, let us know about other entrees which feed the dino-fixation diet.

Monday, February 21, 2005

Handicapped parking permits

Even though we have two children with autism, we never really thought too much about obtaining a handicapped parking permit. Parking in and around Portland, except during the holiday shopping season, has never been particularly cumbersome, even with a moderately tantruming, forty-plus pound five-year old.

However, while planning about our upcoming trip, I began to rethink the issue. In our past travels, when we've visited areas with long treks to and from the parking area, we've had to convince handicapped area gatekeepers that, despite our not being in possession of a parking permit, our children's disabilities necessitated easy access to a quick getaway should a mondo-meltdown ensue. Fortunately, such interrogations were few and far between, mostly because we tend to avoid such venues, preferring instead quite campgrounds and beaches off the beaten path.

Generally, handicapped parking permits are restricted to individuals with mobility issues. Most children with autism don't obstensively appear to fit that criteria. However, I learned recently that permits are also meant to cover those instances where the distance between the parking lot and site entrance might put the individual in physical danger. Boy, did they have our number.

While Sam is pretty easygoing in most public situations, Jonah has "bolting issues." The doors on our home are now fitted with eardrum peircing alarms since the time we found Jonah dancing on the side of heavily trafficked Forest Ave., having figured out the locks and doorlatches on both the exterior and screen doors. Maine BDS has determined that Jonah's propensity to run entitles him to 25-35 hours of one-on-one support by a trained aide. I figured if one Maine agency felt that our son's safety issues were enough to shell out thousands of dollars per year, then another shouldn't have much problem with handing over a 4" x 9" placard to hang off our car's rearview mirror.

However, it's not as easy as that. Most states require a physician to approve the application. While many people with disabilities see their doctor more frequently than the average Joe, this isn't always the case with autistic children. For us, a trip to the doc is 1) an opportunity ripe for contact with infectious germs and virii, and 2) a painfully long period in the waiting room, followed by chasing down a boy as he negotiates the beehive of rooms and hallways. That's even before we make it onto the examination table.

The professionals most familiar with Jonah's "issues" are his case manager, teachers and therapists. So when I made an appointment for his annual physical, I brought up the handicapped parking application with the receptionist, to make sure we had all the supporting documentation when we came to the appointment. I figured we might have to sell the idea, despite the fact our ped herself has an autistic child.

This morning I got a call back from the receptionist. No problem whatsoever. Just bring the application, no need for letters from his school, case manager, in-home support agency, the clerk at the last store in which he had a meltdown, etc. We should have the placard in time for our trip.

Sometimes I think that parents with special needs kids are our own worst enemies. We imagine all kinds of obstacles, think that we'll have to spend hours explaining the most intimate details of our lives, just to get the services our kids need to have positive experiences out in the world. I think that this stems in part from our experiences with the public education system, which is currently set up to be antagonistic to special needs kids who request real accomodation. Surprisingly, however, in the non-education world, even government bureaucracies seem to go out of their way to help.

But that's a subject for another post.

Sunday, February 20, 2005

Special needs vacation tip #2: Reciprocal memberships

Yesterday, I picked up Zagat's U.S. Family Travel Guide, which rates hundreds of attractions, both from a kid's view as well as the appeal to their parents. The guide also indicates age appropriateness, e.g., toddler, young child, and pre-teen, or any combination there of.

One of the things which struck me after just a few minutes perusing cities which may fall along our travel path is that kids consistently rate essentially four venues as their favorites, no matter where they are: Children's museums, amusement parks, zoos and aquariums. Throw in a park and beach or two, and if you spent your entire vacation within this purview, your kids will think they died and went to heaven. However, you might want to throw in an art or science museum, or even a historical monument. Zagat has the dirt on those as well.

Should you choose, like us, to indulge the affinity for children's museums, I highly recommend springing for an Association of Children's Museums reciprocal membership. For an annual fee of $90-$120 (depending upon "home" museum), the membership provide free entrance for parents/guardians and their children to over 100 childrens museums across the country, including big ones such as Boston, Chicago, St. Louis, Denver, etc. Our pass (from the Portland (Maine) Children's Museum also allows us access to hundreds of science museums as well (see list here [.pdf] of all science and discovery museums covered by the ASTC "Travel Passport".) You can purchase your "home" pass at any of these museums.

While some children's museums may be a bit overstimulating for autistic children with sensory issues, many include a quiet area for toddlers and babies. We found in the Baltimore children's museum (Port Discovery) that museum staff were fine with Jonah, our sound sensitive child, hanging out in this room (as long as one of us was with him), even though he was older than the age limit. Better to accomodate than have to endure a major meltdown in the middle of the museum. This year, we also intend on trying earphones and music for Jonah, to see if it helps as well.

Update: I changed the title of this post slightly, as I decided to look to see if there are other reciprocal memberships. Turns out that the members of the American Zoological and Aquarium Association also recognize reciprocal memberships with over 100 zoos and aquariums around the US. The list of participants can be found here.

Saturday, February 19, 2005

Can't think about summer vacationing yet? How about family skiing?

A few years back, when Sam was first diagnosed with autism and I was Googling for local resources, I came across information on the Maine Handicapped Skiing program, headquarted in the Western Maine mountains at Sunday River Ski Resort. I initially thought the program only covered actual physical disabilities, however, according to the National Center on Physical Activity and Disability website (on sidebar),

Participants in MHS have a range of disabilities including autism, hearing and vision impairments, muscular dystrophy, spina bifida, traumatic brain injury, cerebral palsy, spinal cord injury, and other neuromuscular conditions. In addition to residents of Maine and New England, participants come from across the U.S. and Great Britain. Participants submit an application and a physician's statement before undergoing an evaluation by MHS staff to determine their particular interests and abilities.

For more information on the program, visit Maine Handicapped Skiing's website (currently undergoing some renovation).

Wednesday, February 16, 2005

A tale of two search engines

What's the first thing any writer does when they come up with an idea for a new book?

They check to see if it's been published already. At least, that's what I did, a writer with one piddly book under her belt (okay, it was a chapter in an obscure volume on gender archaeology.)

So I thoughtfully typed in the simple search term, "Travel with special needs kids".

The results? Well, I got a couple of resource books telling me that special kids need special parents. Anything about a special parent who can read a map and a compass? A special parent who can pitch a tent? Roast marshmallows? Fend off rattlesnakes? Nope. Checked the table of contents, because, you know, I could have missed something in the extensive reviews, but, no, nothing about venturing further from your backyard trampoline with your "special needs child".

So maybe I was being too general. Let's try the specific, "Travel children autism".

Well, that gets me 123 books, not one which deals with travelling with autistic children. So how about the ultra-descriptive, "Camping with autistic children"? Result? "

Book search results: we found no results that closely match your search

Travel with autistic children? The same.

The fact is, there is not a single book in print which discusses in length and detail the joys, and challenges, of travelling with special needs children, and neurologically/genetically exception children in particular. Nothing. Nada. Zilch.

So like any seasoned researcher, I turned to the web, as we all know that the truly cutting edge information on any given subject first appears on the "Internets." Releasing the Googling monkeys with the search term, "camping with children with autism", I pulled up an amazing 43,300 sites, give or take a few. Sadly, 43,299 of them were about sending your autistic child to summer camp; the other was selling Viagra.

To be honest, this is not all that surprising. The current patronistic society, aka parens patri, the current modus operandi for "dealing" with non-school/therapy time for special needs kids is to shuffle them off to a new school/therapy environment, this one in the guise of a "summer camp". The care, and enjoyment, of children is handed off to those deemed more qualified to deal with their needs, but who is really more qualified do understand our children's need (and dreams and goals) than their parents.

Society needs to cherish the bond between parent and special needs child, and to nurture it, like it claims to want to nourish the bond between parent and "normal" children. To accomplish this, society/government/community needs to promote accomodation, not separation. Vacation, whether at home or on the road, should be a time when familes can enjoy each other without added stress: This may mean in-home support (not childcare) to help with the added challenges of altered schedules, or a more helpful and understanding public for familes who decide to hit the road, to the beach, mountains or amusement part.

Tuesday, February 15, 2005

Special Needs Travel Tip #1

Get a Golden Access Passport.

These are available from the National Park Service for people, including children, with permanent disabilities. It allows the passport holder, along with immediate family (parents, siblings, children) free access to any federal recreation area which charges a fee (National Parks and Forests, BLM areas, Army Corps of Engineers lands, etc.) Better yet, it provides a 50% discount on all camping and recreation (swimming, parking, boat launching, and tour) fees within the designated federal area.

To obtain a passport, bring documentation of your child's disability (I'm using their neurologist's diagnosis) and your child to any National Park or Forest Service office (located at all the sites which charge admission.)

A number of states also have disability pass programs. I'll do further research on such programs and write up what I find in a later follow-up post.

Monday, February 14, 2005

Discovering the perfect pair....

No, I'm not talking about the Sports Illustrated swimsuit model competition.

We currently are the proud owners of a 2003 Odyssey. An earlier flirtation with the Pop-Up (from here on known a PUP) lifestyle left us secretly coveting a Coleman camper. Well, since that time, a spat developed between Coleman and their not-so-quality- oriented parent, Fleetwood. Coleman won the battle (kept their name) but lost the war (Fleetwood kept the camper designs.) Furthermore, Coleman can't give/sell their name to anyone else, at least for the time being. But since the closest thing to an old-time Coleman is a new Fleetwood, we've tranferred our infatuation from one to the other. What can I say, I'm fickle.

Problem is, Coleman/Fleetwoods are a tad on the heavy side, mostly due to their sturdy construction. The Odyssey has a towing capacity of 3500lbs. Most of the PUP we're looking at (12' box, 2 king-sized beds) have a "dry weight" of around 2000lbs. No problemo, right?

Well, enter Pop-up Explorer, a website for those who exist in that ephemeral world between crunchy tent campers and the RV elite. Post a question to their well travelled bulletin board, and a whole raft of PUPers emerge from the woodwork (er, canvas?) ready to offer advice on everything from the perfect campground to the right WDH (weight distributed hitch - don't ask, I'm still not clear on the concept.)

So I posed my specific question on finding that perfect pair of towing vehicle (TV) and camper (PUP) a few days back, and 119 answers later (some, of course, were mine own clarifications... well, more than some,) we've come to some sort of consensus. "Dry weight" means nada in the PUP world: Everything is dependent on GVWR (Gross Vehicle Weight Rating). The PUPs I covet have GVWRs at my Odyssey's towing weight limit. I can probably tow any one of them, through Kansas.

So I've made the executive decision that if we want to tow anything larger than a pup-tent on wheels, we need a more powerful TV; otherwise, we risk leaving our transmission somewhere over the Rockies.

Thus, after we close on the house, the beloved Ody gets traded up for a suitable TV, most likely an SUV, unless some automaker suddenly puts out a minivan with a 5000lb towing capacity. Three months plodding up mountain highways and byways with Grace and Sam's knees up around their collarbones is not the best recipe for a happy vacation. Power and space beat out the soccer mom set.

Not that tough of a choice after all.

The Plan (version 1.0)

The current (1.0) version of "The Plan" is this: Get the house presentable for sale, put it on the market, hopefully getting a quick bite (it is a historic house with a very large urban lot), and close sometime before May 15th. Then pack up the house and send the movers out to some yet-undetermined location on the Left Coast. The cats will board with a friend until we're settled and they can be safely airlifted to our new home. The dog is undergoing "service dog" training, so as to be Jonah's four-legged replacement for his current two-legged in-home support aide, so he will travel with us.

And for the rest of us? Veteran tent campers, such a journey in our LL Bean's Waldorf-Astoria Tent might take too high a toll, with all the set-ups and take downs, particularly late at night, fending off a pack of hungry skunks. So we're on the hunt for (gasp!) a pop-up camper. Nothing with a lot of bells and whistles, just enough room to sleep six comfortably.

Then we head out. Our goal is to arrive somewhere on the West Coast (my preference - Oregon, Eric's - the Bay Area) sometime before September. Or not. Depends upon how long we can sanely travel with four kids, currently ages 2.5 to eight. We'll mostly stay in public campgrounds, although some urban destinations here and there may require stowing the rig in a safe parking lot and roughing it in a nice hotel room for a night or two. We hope to see as much as we can of the land "from sea to shining sea", although I'm not exactly convinced of the merits of the Deep South in mid-summer. Throw in a dozen species of poisonous snakes, and I'm even less convinced I travel much below the Great Smokies. But that all is still TBD.

I imagine it will be challenging, even down-right hard work, from time to time. But Eric and I agree that the best memories we have of spending time as a family are those from our camping trips; to Passamaquoddy Bay in late spring, to Cape Hatteras in late summer. Despite hurricanes, tornados and swarms of mosquitos the size of buzzards, we are never as content as when we're ensconded in nylon and down.

Some of my reasons for wanting to do this now are personal. My father lived his entire life making wonderful plans for his retirement, putting off many of their travels until they could enjoy them with all the time in the world. Three months after he retired at 62, my father died from a brain tumor. Four years later, a diabetes-induced heart attack took my mom at 63. All of their parents lived to be eighty or more; they had no reason to think they didn't have years ahead of them in which to enjoy their retirement together.

Despite having four small children, neither Eric nor I are particularly young. Ergo, carpe diem. This opportunity seems to be throwing itself at our feet, so there is no time like the present.

When Dwight and I first met faced to face, we kibbitzed over the prospect of putting together a book on travelling with autistic children. I still hope to lasso him into a few chapters on his own travels with his son, Bobby. This is an opportunity to put our experience and resources we gather along the way, both through this blog and, hopefully, should we find a willing publisher, in print, to share with other families of neurologically exceptional children.

So that's the plan, version 1.0. I'm sure we'll see many more versions along the way.

Sunday, February 13, 2005

The beginning

A couple of weeks ago, Eric and I agreed we would embark on this adventure. A move, from our home of 8 years on one coast, to a new world, full of uncertainly, and hope, on the other. For both of us, Maine has little left to offer career-wise: The tech revolution former Gov. King touted as just around the bend never made it past Portsmouth, and "Clean Elections" removed money, and thus the staff that went with such, from state and local politics. An abundance of professional operatives now vie for a few choice not-for-profit jobs, and if you're a hopeless believer in the fostering a non-partisan Progressive environment, job choices are nearly non-existent.

Governor Baldacci has made this move all the easier with his latest budget, which drastically cuts spending on special needs children (early intervention, in-home support, Medicaid reimbursement) for the benefit of his 2006 re-election bid. He promised that he would not raise taxes and a few thousand (non-voting) disabled kids are not getting in his way.

The housing bubble in Portland has expanded beyond recognition (+20%/year) since we purchase our 1913 Four-Square, putting us in that "landed-poor" bracket - unemployed, but with a healthy reserve of untapped equity. So cashing out before the bubble bursts (which it eventually has to in Southern Maine, with under-employment and suburban sprawl impinging upon urban real estate prices) seems the thing to do. And with nothing but 12,000 of history holding me here, it was time to let Eric return "home", or at least to the familiarity of the sun setting, not rising, into the sea.

So here we are, ready to move our family 3500 miles from the only home they remember. It's thrilling and frightening all at once, like the high point of the roller coaster before it plunges back towards earth. It should have more significance than simply getting from point A to point B. This is an opportunity to give our children a gift too few can experience, autistic or not. It is also the chance to offer experience, and hope, to thousands of families for whom the word "vacation" means an end to the structure of school, replaced by scrambing for appropriate caregivers or juggling work hours and time off in order to fill the void left by absent teachers and therapists. Vacationing as a happy family is the dream most parents share before the first booty is even knit. That dream should not die with a diagnosis of autism or Down's or other developmental disability. It is my hope that this wonderful journey upon which we are about to embark will embolden other families with neurologically exceptional children to live the dream as well.

Welcome to our adventure. Buckle up, the ride will mostly likely be bumpy.