Adventures in Special Needs travel: Hawaii

The family went to Hawaii. Two special needs adults, one neurotypical daughter and two parents. There was a lot of planning work and a lot of on-the-fly adjustment. We chose Honolulu/Waikiki because our Explorers are more comfortable with concrete than with nature. The trip was a success, in part because, by sheer luck, the atypical rainfall spared both golf outings with #1. 

Luck aside — some things that worked well:

1. Direct flight. A five hour mechanical delay (Delta) was stressful though.
2. Single residence located in Waikiki with kitchen and good parking. We ate most meals there. Nearby groceries. Many things we could walk to.
3. Fairy detailed advanced schedule that we then swapped around based on weather.
4. Copious research.
5. Explorers now independent enough they could stay in hotel room or go off on their own in many settings.
6. Private tour (“Oahu Private Tours" <jason@oahuprivatetours.com>). We got lucky with our guide too; #1 is on his best behavior with young women.
7. We rented a van (very expensive in Hawaii by the way).
8. Good attractions for our Explorers: Zoo, Aquarium, Waikiki beach, Paradise Cove snorkeling (quiet, no Hanauma stress), Foster Botanical Gardens (tranquility), Diamondhead hike, “Edge” restaurant hotel table that was near beach so we could mix food and sand…
9. English language generally worked, McDonalds and Subway ubiquitous.

It was a very big expense of course few families could afford it. We did it this one time because we could manage cost and the children are leaving school settings, entering work, moving out soon, etc.

It’s perhaps useful to know this can be done — and the general approach might work for others. It’s a long way from our 2010 family trip to a nordic ski resort and 2008 road vacations but I don’t think we’re quite ready for, say, a week in Korea.

Adventures of the autistic family - the Duluth Traverse mountain biking trail.

So we did this. We’ve come a long way in 7 years. It’s not like there weren’t issues, but, really, it is kind of amazing.

Adolescent special needs - the epic trip

35 friends and relatives across five sites. Two provinces and 7 states. More than 3,300 miles of driving. It was an epic family car trip.

A car trip with 1 dog, 1 neurotypical child, and two boys on the spectrum. Two boys, and two hormone wracked adolescent.

It was a great holiday. We had no need of a lawyer, a physician, a veterinarian, a mechanic or a psychiatrist.

So it can be done, assuming one is a special needs veteran and accustomed to crises that might topple a regular parent. The mixture of motion, of car time and time limited but intense visits seems to work for our guys. It's not something I remember from the days I read parenting texts, but we're data driven. We go with what works.

The trip is an opportunity to reflect on the autistic adolescent. On the one hand, the desires are intense, and there's a complex mixture of the adult and the child. On the other hand, intense desires are also opportunities for the Machiavellian parent (as we must be). They give us new challenges, and new levers.

More problematically, behaviors that could be ignored in a fresh faced child are more sensitive in a strong jawed neo-adult who needs to start shaving. Punching was never acceptable, but now it's dangerous.

The upside is that we're seeing an overall improvement in most behaviors. I don't know why that is. Maybe it's just practice, but I'm hoping his brain is better able to sequence events, to connect action with reaction, and perhaps even to anticipate consequences, to be able to plan towards an end. The improvements, at this time, are pulling ahead of the downsides of adolescence.

Only 80 years to go now ...

Not recommended: special needs spelunking

This actually worked, but I wouldn't try it the same way again.

We took two "spectrum" kids on the regular guided tour of Wind Cave National Park.

One of them was on the verge of bolting for the half the 60 minute tour, then he settled down. The other was tearful, anxious and had his ears covered and eyes largely closed for about 50 minutes, though after 30 minutes he was doing better. By the last 10 minutes he was almost ready to start.

It's very hard to exit one of these tours. You need a guided escort to take the elevator hundreds of feet to the surface. Yes, it was a bit much for our guys. They need a more gradual introduction. We should have started with the small-time gaudy tourist-trap type caves that are easy to enter and exit. Then we could have worked up the to the real thing.

It can be done though. Not saying it should be done ... this way.

Adventures in special needs – A Nordic ski resort

At one point in my life if I felt I needed a challenge I’d ride my bike a few thousand miles, or explore a foreign land.

Now I can dwarf those experiences with a simple four day outing to a Nordic ski resort.

I’m still recovering from this challenge. It was successful, but it did push the envelope.

We started a few months ago with one neurotypical child and two on the “autism spectrum” (a somewhat meaningless concept, but we don’t yet have a better classification). One child had done some snowboarding with limited success and had refused any skiing of any sort. Another had done some downhill skiing and decided, after a single face plant, that downhill skiing was insane. A third had very nervously descended a bunny hill.

We ended with all three navigating intermediate cross country ski trails in the wilderness (really) of northern Wisconsin.

The unique challenges here included:

• Three children, two parents. This stuff isn’t easy even for neurotypical children and it was very rare to have all three in a reasonably good mood at the same time.
• Weather. These children are used to winter, but an autistic meltdown can take a long time to resolve. Sitting around at 10F for an hour can be a problem, and they don’t necessarily respond to cold in a rational way.
• Clothing. See weather. Spectrum kids and adults can be resistant to logical dressing.
• Gear. Actually, this was easy. Cross country skiing fear is much more comfortable than downhill or even snowboarding gear.
• Unfamiliar environment, atypical stimuli: Northern scrub forest, harsh winds, knowledge that there really are wolves and cougars in the woods (even if they usually stay out of sight) – all troublesome. One child has a very strong need to always know exactly where he is in relation to the home base and to all family members – the first time on a trail was extremely scary. (The second time was easy however – his location memory is exceptional).
• Different schedules: One child takes hours to come online and peaks in the afternoon. Another rockets at dawn and is done by noon.

The full story of how we made the transition for all three over about two months would take a book to tell. It required genuinely Machiavellian manipulation of sibling relationships and a wide variety of motivators.

There are some quick lessons, however, that one might apply to a variety of similar special needs adventures.

1. Food: As a result of the climate, exertion, and anxiety the children needed to eat five times a day. If they were short on food they all melted down. We needed to keep them fueled with solid, high fat, high protein meals.
2. Everyone melted down sometime, including the neurotypical child. Interestingly they rarely melted down all at once, perhaps because there was a strong sense of group solidarity. Each child felt their parents had gone insane and they needed to look out for one another.
3. Choose a friendly resort in decline with a very good pool. The downsides of the resort people having limited knowledge of what worked and what didn’t was outweighed by the warm water swimming pool. The need to serve to the smoking, drinking, and spending snowmobiling market meant our kids oddities went unnoticed.
4. Our mobile phones were useless, but we had modern digital “walkie-talkies”. These things are cheap and absolutely amazing. REI has very good ones.
5. It would have been better to have had a third person along, but it was doable.
6. You need to be fully on your game. Get lots of sleep. Plan carefully and be ready to abandon every plan. Have contingencies for your contingency plans, and be ready to abandon those. Know when to retreat and when to advance.
7. Find a local expert and review all the trails in depth. In our case one parent woke early to scout out trails in advance and plan routes – that worked well. Get the best possible maps. Have a compass.
8. Carry a big pack to hold clothes, jackets, reserve materials, etc.
9. Be ready to stop a passer by and send them for help. We never had to do this, but you have to be psychologically ready to bail.
10. Establish a routine very early. Our was: TV and breakfast while Dad scouted routes. Swim. Eat again. Skiing. Eat again. Game room/rest/computer use. Eat. Ski/Other. Eat. Swim. Video.
11. Bring chocolate on the trail.
12. Lower the room temperature before dressing. Open a window and discretely turn off the heat. This is a big help.
13. Overdress. They need to be warm at the start. Clothes can be removed and placed in the backpack.
14. The kids snow pants were too heavy. We’d have done better with lighter wind pants over the nylon loose stretchy pants our boys favor. Invest in clothing.

There’s much more, but those are the ones I can remember. The most disabled child who we thought least likely to succeed turned out to be a wizard – he skied circles around us wearing only a long sleeve shirt when the wind chill was probably 10F. Everyone succeeded, all our goals were met, and the parents will eventually recover.

Update 2/1/2012: Years later we've done this several times. The biggest issue lately was with our neurotypical daughter, who gets anxious about downhills and loathes falling behind her brothers. Which is to say, we were totally victorious. Until I reread this by accident, I'd forgotten how hard it was to get this initial success.

Road vacations: better options than you might think

Vacations with special needs children can be less than restful.

We have gone with long van-bound hotel-staying road trips for years. The first years, when the children were young and our techniques were less advanced, were like hang gliding around a tornado.

We did complex real-time calculations around video length, gasoline levels, food levels, drug levels, bladder volume, local geography, local facility expectations, weather and much more.

Now it's more like base jumping -- risky, but fairly predictable.

Here's a quick (very quick) post on advantages and recommendations for our family. The reality varies from trip-to-trip as we all age and change.

On the last trip we took our dog. That odyssey also involved a very politically challenging 50th anniversary parent celebration and several different family reunions at multiple sites. It spanned two nations, maybe 2,000 miles or so. My back blew out and I needed an ambulance ride to an ED about 60% through, then spent 3 days flat on the floor of the van until I invented a rig that allowed me to sit and drive.

And yet, and yet ... the children thought the trip went well.

Which is to say that if the vacation can work for the children under these circumstances, then the arrangement is more robust than even we expected.

Vacation for us? That was a funny one. Actually, if not for my back, I'd have had fun. I think my wife actually had a good time, and even I will remember the trip fondly after a few more weeks of forgetfulness.

Advantages and advice follow. I'll ask my wife to review and expand so this may develop further.

Advantages

1. In a moving van, no-one can hear your child scream.
2. Variety (external)
3. Consistency and predictability (internal)
4. They'll never see you again
5. You can stop the van, you can't stop the plane.
6. Flexibility

Tips

1. Small town parks, usually by schools.
2. Picnic, not restaurant
3. McDonald's drive through. (Same everywhere)
4. Avoid the big interstate (rest areas on I 90)
5. Avoid poor/destitute/hyper-urban areas (need breaks, need space)
6. Audio CDs ("books on tape") - superb. Little House in the Big Woods, Hank the Cow Dog
7. Activity bags: small toys, coloring books"Yu-Gi-Oh" cards and "duel disks".
8. iPod Playlists.
9. Movie in pm
10. Rituals: breakfast in room.
11. Gas station BID: bathroom, snacks
12. Swim in AM and PM
13. Ideally stay with one or two hotel chains (Baymont, AmericInn, Residence Inn)
14. Try to maintain your usual behavioral management regiment (ours fell apart on our last trip, no doubt)