Venturing Off-World

The subject of traveling with Josh has come up within the context of several previous posts but none that have focused on it specifically as the topic. Since going anywhere with him, even just out to dinner, is an exercise in anticipatory planning, preparation, packing, and co-ordination, I felt it deserved a post all its own.

It's amazing, really, the things you take for granted before you have kids.  Of course, you don't realize that you are taking anything for granted until the kids come along and change everything.  Going places, and I mean, anywhere - grocery store, post office, DMV, or you know, Europe, is no exception.  It is probably one of the things that changes the most.  Kids = stuff.  Whether it's in your house or on the road, they have and need a lot of stuff.  Special seats, special beds, special food, special toys, special mobility devices, you name it, they've got it and you need to take it all with you.  Gone are the days of simply jumping in the car to run a "quick" errand.  Of course you get well versed in how to manage, marveling at how adept you become at handling strollers, bags, carriers, other kids and sometimes, dogs.  You get used to it.  And just when your memory of the time before all the stuff arrived in your life is about to fade completely... BAM, circumstances allow you to go out somewhere sans stuff and it all comes back to you. 

The amount of stuff  is always inversely proportional to your kids' age(s).  Normally, as they get older, the amount required when you go places becomes less and less.  This is not so much the case with Josh, or, I would imagine, any autistic child.  The first real travel challenge with him was when we moved from Philadelphia to Seattle when he was just two.  Though he had not yet received his "official" diagnosis, he was already in Early Intervention for all of his delays as well as his sensory integration/processing issues and we pretty much knew anyway.  We decided to fly.  Even though Josh had not turned two yet when I bought the tickets and he could have sat in my lap, we decided it would be best to buy a full ticket for him and have him in his car seat on the plane - he was used to the seat, comfortable in it, never fussed in it, so it seemed like a good idea.  It was... sort of.  While the theory of how Josh would be in the seat proved correct, traveling with a full-sized car seat ON THE PLANE is not easy.  His seat actually got stuck in the x-ray machine when we were trying to leave Philly.  True story.  Josh's dad managed to get it out, though the TSA folks were not at all happy about the damage to the x-ray machine.  Maybe they should have thought of that before making us put the seat through it.  Then you have to get it on the plane and fastened in to a seat, all the while managing the child or children, and all the rest of the stuff.  This, is why they invented pre-boarding.

As he got older, the thought of trying to manage his now special-ordered, extra large car seat on a plane was just too much.  So now a days he just sits in the airplane seat.  He can easily undo the seatbelt though, so the trick these days is to make sure he stays calm and happy for the duration of the flight.  A task that I'm sure you can imagine is easier said than done.  Since the move 10 years ago, we have not attempted any single flight longer than about 3.5 - 4 hours and I'm not sure I'd want to any time soon.  There is just so much that could potentially go wrong, visions of being escorted off a plane in the middle of nowhere because Josh becomes too disruptive make me too nervous.  Four hours or less is doable though.  Of course there's still a lot of stuff involved.  I mentioned in the Service dog posts about giving him a tiny dose of a sedative prior to flying - I may have said it was Valium, that was incorrect, we use Ativan, in an extremely tiny dose as prescribed by his psychiatrist.  We made sure to try it at home before the first time so we would know how he reacted to it.  You don't want to be trying out a new medication when you are traveling without knowing how your child is going to respond. I always try to make sure I have everything he will want DVD-wise, as well as having a spare, fully charged back up battery for the portable DVD player.  I order new or replacement Blue's Clues books before the trip and don't let him see them until we are in flight.  I bring a variety of special candy treats, and try to find a few other small, desirable (aka sensory) objects to surprise him with as well.  We always need a change of clothes and pull-up changing supplies.  I bring a small pillow that he's had since he was a toddler in case he wants to lie down.  I already mentioned I don't like the bulkhead because you can't lift the arms of those seats, but there is always the fear that if he does get upset, he will start kicking the seat in front of him.  The times I've flown with him, I have taken a chance on that not happening and not been seated in the bulkhead.  But we've been lucky, and if we were ever to risk a longer flight somewhere, it might be better to sit there as there would be a higher risk of his being unhappy at some point.

And of course there's Buddy.  He has his own stuff.  I talked about security with him in the Service Dog posts, that's always fun... on top of everything Josh needs/might need, I have to make sure I have Buddy covered too.  Poop pick up bags/cleaning supplies in case of any accidents, treats, vest, harness, leash, food, bowls, documents to verify vaccinations, etc...

The car is not quite as daunting as plane travel with him, though it still requires a lot.  I bring more in the way of food for him when we go places via car.  More of his toys and a blanket or two, as well as everything I usually bring for plane trips.  We don't use the Ativan for car trips though, that is strictly for flying.  And it doesn't knock him out, by the way, it really just seems to keep him mellow for a couple of hours.  Of course in the car I've had to stop at highway rest-stops to change him.  Which is not something that is enjoyable by any stretch of the imagination, just sometimes necessary.  When we go up to visit my family in Canada we have to stop at the border to go through customs.  The lines are often very long.  Josh is usually fine in the car unless it's not moving, then he's not so happy.  So border waits can be difficult.  There are two different ways for us to cross so when I am getting close I have to pay attention to the signs indicating wait times at both crossings to see which will be faster.  Man, when both boys were little and Josh was on the GFCF diet, I was packing food for both of them for however long we would be away... GFCF stuff for Josh, things Zach could eat because of his allergies, I had grocery bags, coolers, you name it.  I'd open the back of the car at my mom's and she'd be like "um, how long are you staying, exactly?!" Would take me half an hour just to get everything unloaded and unpacked.  Good times!

These days I don't travel with all the food, just some things for Josh that I can't find up there for him, like his almond milk (because I could not get him back on cow's milk after going off the GFCF diet).  We also don't pack as many toys as we used to for him - just a few of his most favorite books, a few favorite toys, and all his DVD's are usually ok at this point. 

I have to take those things when we are simply heading out for dinner as well, though.  Along with spare pull-ups and changing supplies and special candy treats.  We also have to plan so that we don't head out later than 4:30 - 5pm, as there are usually longer lines to be seated when you don't get places early, and Josh will NOT tolerate waiting when he knows fries are going to come. 

When I have had the rare opportunity to venture off without Josh in tow, I realize just how easy it is and am shocked.  Driving up to visit my mom a few months ago, by myself, I didn't have to worry about border waits, I could make a pit stop and not lose my mind over everything that Josh was touching, I packed in about 10 minutes and had one, small, bag.

My mom just looked at me.  "Where is everything?"  I laughed.

Cereal C.S.I.

It would seem we have a break-through in the nutritional-deficiencies department!  If you have been here and read "Do You Want Fries With That?" you already know what Josh eats, which is to say, not much aside from potatoes in various forms and a lot of junk.  He won't touch a fruit or vegetable to save his lfe - mind you, I rarely do either, so I can't really blame him on that one (back off, people already yell at me enough about the not sleeping-thing!).  He does take a multi vitamin every day and most of the cereals and things he eats like that are "enriched" or "fortified", so he does get a decent dose of vitamins at least.  Protein however, is the tough one.  He's off and on with peanut butter, and has been in an off cycle for some time now.  No "Flintstones + Protein" that I know of, so it is truly a deficiency in his diet and I am always scheming to come up with possible ways to get some in to him. 

Recently I found a product by Kellogg's called "Special K2O Protein Water Mix". 

This seemed like the answer.  Josh will only drink 2 things: water or vanilla almond milk.  That's it.  No juice, no cow's milk, no shakes or mixes.  Nothing else.  The problem though, is that if it does not look like plain water, he won't touch it.  So no colors.  He's not big on flavors either, so I had really hoped this was literally just protein powder added to water, but no such luck.  It is both flavored AND colored.  Sigh.  It is a great idea though, and if he would go for it, it would sure help in the protein and fiber departments so I will continue to try. 

So not the break-through.  

Turns out, Josh discovered something on his own - I just needed to do some detective work to figure it out. 

Josh is pretty much set in his ways with most things and the cereals he will eat are no exception to this.  He will on occasion see something that someone else is eating and decide out of the blue he wants to try it.  I had a cereal in the cupboard from when my dad was visiting a while back, Post "Cranberry Almond Crunch" and Josh decided one day he wanted some.  So I put a little on his plate.  He did what he does with most things there, and proceeded to pick through it, crush various bits of it between his fingers, push it around and off the side of the plate and on to the table, some falls on the floor - this is all just part of Josh's routine while at the table, it doesn't always involve actual eating.  So I figured he was just going to play with it and left him to it.  He continued to ask for it, however, over and over and over until the box was almost empty.  Wow, what was in there that he liked ?! Was he actually eating some of it or is this a new sensory thing ?  So I tried to watch him.  He's a suspicious little toad, so he gets funny sometimes if he thinks you're watching too much, he often just gets up and leaves.  So I had to keep being casual about the observations.  It did look like he was picking through it specifically for something, but just what that was, I couldn't tell.  Why?  Well, Josh is what is known as a "grazer".  As the word implies, he mostly eats randomly/continuously throughout the day as opposed to any set time or size of meal.  So at any given time there is pretty much always something on his plate.  Normally if I try to clear off what he has left from something I put on there earlier, he will get very upset, so I usually just leave it alone and add to it as he needs me to.  My mother refers to it as his "trough".... thanks, mom.  She's right though, it can certainly achieve some epic proportions of food piling and sorting all around his place - the dog does his best to take care of the floor stuff.  So it is a bit tough to tell what he's doing.  Is he really eating something?  Is he just licking it (this happens a lot)?  Is he crushing it to make crumbs to play with?  Is he sticking it in his socks?  Inquiring minds want to know! I thought at first he just liked the "crunch" parts, those being the granola-esque clumps in the cereal.  So I bought a whole box of "Honey Bunches of Oats".  Turns out he does like those little clusters, but for crushing, not for eating.  So what was it?  Sadly not the cranberries, though a few of those did make it to his socks...  That left the almonds.  I think at first he was just licking the little slices because I did take a lot of those off his plate once he was asleep when he first started asking for this cereal.  But I did notice over time that those were disappearing.  So I went out and bought a bag of sliced almonds - when he saw it he asked for them immediately.  PAY DIRT!  I told him what they were, so now he asks for "ahminds" and is eating quite a lot of them.  It's a small victory, but I'll take it :)