Autism Watch: 2007

Posts Tagged ‘travel

…and we just happened to end up here in the south.

Finally, it happened. We sold our house and closed escrow on 3/24. We had three days to pack it up and get outta Dodge. Gladly. We ended up at a KOA for a couple of days, ensuring our 53′ trailer full of way too many things was picked up by the transportation company hired to drive it out for us. (And at a significantly decreased cost over using a professional moving company, even with the cost of the trailer factored in we saved over $12k. And now we have storage for our belongings until our house is built.)

The drive went well. At the time, it was on/off boring, exhausting, exciting, interesting, tedious, and expensive. Our caravan consisted of our SUV pulling our 32′ travel trailer, otherwise known as the RV, driven by DH and navigated by our 15 yod, carrying the 14-year-old Husky. I followed behind in my sporty sports car, carrying the 90-pound service dog in the back seat (and I do mean the WHOLE back seat), the little Yorkshire Terrier on my lap, and BB in his handmade seatbelt covers to my right. Following me was my son in my husband’s car, with the backseat/floor full of cages for our guinea pig, turtle and bearded dragon. BB was usually carrying his DS, covered in his blue blankie because the sun made it hard for him to see the DS. We drove to the Grand Canyon right before sunset, and ended up in a comfortable KOA in Arizona, resting with a bottle of wine and homemade burritos. Ahhh, sounds nice for a long roadtrip, right?

Let’s see, what did I leave out. Oh yes, the truck inexplicably died at the top of the highest pass outside of Scottsdale, Arizona. Poof. No smoke, no sound, no power. Fifteen minutes later, we re-started, it worked, we drove. Leaving Gallup, New Mexico on Tuesday, a tire on the SUV went flat…in the midst of an hour-long delay due to a bad rockslide, where we ended up going 2-3mph. We made it to an offramp, where very nice Arizona transportation workers allowed us to change the tire on the onramp on the other side, as it was closed to traffic because too many special people were trying to utilize the ramps as shortcuts around the traffic. (Arizona, what a great idea you have! Other states, listen up…implement this practice! Stop the special people!!) Back to my story…we get back on the freeway, make it another hour and we see the SUV/RV start to fishtail. Scary stuff. My baby! My baby’s in there! (DH tells me later “I see where I stand. The dog wants to know why you didn’t worry about him either.”) He gets it safely to the side of the road, where we learn the back left tire had shredded, and the rim was shot. Because of the aforementioned flat tire, being in the midst of nowhere, and being stuck in a one-hour delay for the rockslide, we’d not been able to reach a service station to repair the spare. So we had to buckle down and call AAA.

I will spare you all the tired eyeballs that will result from reading that saga, but suffice it to say, AAA stunk. Big time. After an hour-plus alongside a very busy freeway in high winds — three cars, a disabled vehicle, a windblown RV and an autistic child — the SUV was rescued…but ended up with it and DH (and the dog!) stuck on the other side of the freeway, 30 miles west of me, out of gas..then they couldn’t figure out how to get it started. Three hours later, me and the RV were rescued, but DH was still stranded..cold and hungry. Long story short, we were literally dropped by a rude towtruck company owner at another KOA, off-center and unable to open our slideout or use all our hookups, around 630pm. DH was still stuck until around 7pm, and he made it to our KOA spot around 800pm, four new tires and spare. AAA, still waiting on the reimbursements and admittance you won’t hold these two, ahem, “tows” on our record since I hardly think they qualify. We ended up backwards and a day behind, but oh the stories we can tell now! (How I renew our auto club membership will NOT  be a story I’ll be able to tell. Pay on our own sounds like a good plan.)

The rest of the trip was fairly uneventful. We made it to our destination on Saturday instead of Friday, but saw a lot of hilarious things and really could say it was a good time after all was said and done. We did have a few meltdowns, the scariest of which was at the Grand Canyon, but that was resolved after, hmmm, 40 minutes or so? People still stare at kids with meltdowns, even if they’re faced with literally one of the most gorgeous distractions in the world. Go figure. Kid in tantrum, Grand Canyon…hmmmm, I’d look at the Grand Canyon, but that’s just me.

BB’s doing really well. Settling in here has been easy, he’s surrounded by family and a relaxing environment. He’s got his dog, and a lot of room to run. Couldn’t ask for more.

I’ll update tomorrow on the school situation. Too much for one entry already!

As I’ve bemoaned about recently, we’re in the midst of a move. We’re excited about moving but the move itself, not so much. It’s work. A lot of it. It’s chaos. As I type this, I have a bottle of barbecue sauce next to me on the table, because I was packing up our Nascar cabinet and I am not moving a bottle of barbecue sauce, even if it has a picture of our favorite Nascar race car on it. We love our driver, but barbecue sauce sitting in a box for six months…no, thank you. Past the barbecue sauce is a stack of boxes, and an empty hutch that once held our Nascar collectibles. Tons of it. Wow, I could sponsor a race if I sold it all. It was no easy feat packing up the autographed memorabilia, the occasional lug nut and odd items collected from race tracks for the last six years. Beyond that, empty boxes, calling my name, screaming “Pack pictures in me! Wrap the rest of your wine glasses and put them in me too!” Then there’s my couch, nestled amongst those boxes and a pile of displaced items that had a home on a wall unit until my husband moved it to put it in the 53′ trailer we now own in the morning. And that’s just one room, so you get the idea. (I’ll spare you what my bedroom looks like, devoid of half its furniture and items, leaving me wondering how I’ll peacefully sleep in there for the next 2-3 weeks.)

Last night, I had to go through BB’s toy cabinets. He has two huge ones, and there was overflow under his foozball/air hockey table, and in his sister’s closet. It took me quite some time to sort out the things I knew he wouldn’t want, and then to ask him over and over, “Do you want this? What about this?” “Mom, I’m too old for Hungry, Hungry Hippos..” and “Mom, we played Guess Who so much at therapy, I don’t want it anymore.” On one hand, I was repeatedly thinking how great it was that we only had to pack half of his stuff. But on the other hand? My baby is growing up!

There was some sadness as I stacked Chutes ‘n Ladders in the garage sale pile. We’d played that game over and over. It didn’t require him to speak or maintain eye contact, and he’d win almost every time. The cards that he’d sort out and lay out perfectly in order, side by side, not off by a hair went, too. I almost kept them, but what in the world would I do with them? They were a good memory, because we’d spent hours upon hours working and playing together, but they were bittersweet — they were such a sign that he had autism, and I never picked up on it.

I was so happy when he chose to pack his Ratatouille chef’s hat and apron. He looks so darn cute when he puts them on and makes his famous Club Cracker, mustard and deli meat sandwiches. He decided to keep all his dinosaurs and his pirate swords, but I was sad when he put the “little kid” pirate costume in the go pile. Sniff. Then we got to things I was sure he’d keep, all his Hot Wheels and Matchbox buildings and garages. “Mom, I’m not a little kid anymore.” Then my husband just had to chime in, “His interests have changed, it’s okay.” I think he knew my ambivalence about seeing some other kid run away with Rocket Park playset, something he’d play with for hours, even if he played with it a bit weirdly. When the entire Little People world goes, for not a cheap price, I may cry.

He’s got a new interest in drawing this week, and it’s one that fits right in with his computer animation and gaming interests. We’ll definitely be encouraging it and getting him whatever training he wants, as long as it remains fun for him. He drew an eagle that easily rivals something a much older child would do, and Dad was amazed at how fast he did it. (Dare I say that part of me is thinking a-ha, I passed something down! I was an art freak and an art major. It’s still a love of mine, though now I mainly view art instead of creating it. Who has time and the kind of focus it needs?)

Now we’re at the phase of the move where he just wants it over with. The disruption of his bedroom and routine is getting on his nerves. When he asks for a new subscription for a month to Club Penguin or wants to go see a movie on a certain day, I have to remind him that we’ll be on the road for five days, and in transition a few days before and after that. Online time may be at a premium. (Then again, we are staying at KOAs with wi-fi all the way through our drive.) He wants to move, but doesn’t hesitate to remind me, frequently, how much it’s getting in the way of his normal things. Sigh. Please, Lord, let the rest of escrow go smoothly and let it all come together so we can really be out of here soon.

My husband’s in another phase of traveling for his job. I don’t mind — he’s got a good job and he does it well, and I have to admit I like sitting up in bed with the light on late, not having to make a real dinner, and pretty much just doing things however. But I do miss him, and so does BB. (For any new readers, BB is Barnacle Boy, a nickname from when little guy was so firmly attached to me due to our attachment parenting style, we called him the barnacle.) When he hears the door, I get “Daddy?” “No, Honey, remember? Daddy’s traveling. He’ll come home on Friday.”  “Oh.”

So we go about our regular business of computer games, snack, homework, more computer games, and dinner. Shower, flossing, teeth brushing and some TV. Nail trimming. Hair brushing. And what would regular be without some upset? Tonight’s came from me ridiculously (not) saying no to him playing some violent video game. (It turned out though that we don’t even own the game and you can’t play it on the computer, so that would have made it easier HAD I KNOWN THAT.)  The homework was shoved on the floor, pencil went flying, and the sobbing ensued. Crash. Bang. Boom. The sounds continued as he stumped up the stairs and into his room. I was able to fix it, as much as you can at that point, by promising to look at the game next time at the store, so I can see for myself if it is violent or not, instead of basing my decision on what a few people have told me. Sniff.

Now he’s snuggling into his bed. He insisted on sleeping in my room, in a little bed he made on the floor. And you know what THAT means. It means the dogs are sleeping in here, too. I wonder if I’ll make it through the night without waking up to the Yorkie on my pillow.

Not sure if it was a smart idea or not to agree, but his routine’s already out of whack, and for years, he’s slept in here when Dad’s traveling. Not sure which decision would be worse…..

And when we bought him the monthly package on Roblox, he promised us he wouldn’t throw fits over certain things. Ha. Gotta work on that one.

We’re annual passholders at Disneyland, so we try to go at least once a month, if not more often. With leaving for vacation soon, we weren’t sure we could fit it in but we wanted to check out the new Toy Story Mania ride. In one word: fantastic! Again, Disney has succeeded with a unique ride that is definitely going to be a big hit. Before you go, prepare your child that it’s not so much of a ‘ride’ as it is an event in which you participate. The car you sit in spins a bit (four to a car, but two to a seat, and you won’t see the other two in the car at all during the ride) and moves semi-quickly but there’s no up/down. The thing that you might want to be ready for is that some of the objects ‘fly’ at you — it’s 4-D flying, but they do an amazing job of feeling the objects as they fly at you. Ds did great, didn’t freak at all, and insisted on going back again later. So we did!

For a Monday after school was out, the park wasn’t that busy. We waited a mere 3-4 minutes to get our special assistance pass renewed, then headed off for rides, rides, and more rides. Tower of Terror is a ‘must ride’ every time, and we even got him to go on Soarin’ Over California. And, wonder of wonders, he was just tall enough to ride California Screamin’ — and he got front row! Talk about proud, I thought dh was going to cry afterwards. 😉

As you know, or maybe not but you will now, autistic children have unique personalities. They usually know what they want, and trying to change their mind is often futile. You end up trying to understand what they want, then learning that’s often futile, too, and just go with the flow. This was clear again when we took the little ones shopping and told them to pick a souvenir bigger (e.g. more expensive) than what they normally buy, as an ‘end of the school year’ celebratory purchase. First stop, dd finds a keychain, and ds finds a “crystal skull” (so named since he saw Indiana Jones’ latest movie). Next store, ds finds this big, thick walking stick, topped with a wooden skull. (Notice the theme here?) Cute, but honey, really, how are you going to carry that the rest of the night, and what will you do with it? Two more stores later, and ds is running to the skull-topped walking skull immediately consistently, like he knows the store layout. I pick up the tag; it’s $35. So it’s not just a walking stick, it’s an expensive walking stick….handcarved out of some special wood in Bali. Okay, that explains the price. But again, how are you going to carry it the rest of the night, and what will you do with it? Thirty minutes later, I had the answer. He wasn’t going to carry it; we were. And he was going to name it and make it his new friend. After we got him back in the stroller, we spent the rest of the evening saying “Honey, hold it straight up. Straight up! STRAIGHT UP!” to prevent the skull from taking out unsuspecting guests. To his credit, it apparently was a cool souvenir. It got a slew of comments but all he cared about was that it was his. And what does he do with it? Sleep with it…carry it around everywhere…it took a bit for him to realize that it wasn’t going on our vacation with us. No, really, we aren’t carrying it and I doubt the airline would have let us carry it on anyway. (Then again, at this point, maybe it’s just lucky if we autistic families get to stay on the plane anyway? Maybe I shouldn’t joke. I’m getting on a plane in about 35 hours….and landing at Raleigh-Durham airport. No, I’m not flying American Airlines.)

If you’re considering a Disneyland trip soon, go for it. If you can, try out the Blue Bayou restaurant at the Pirates of Caribbean ride, but make reservations or you will be out of luck. It’s not cheap — kids’ meals are $7-$8, and it comes with loaded plates (we aren’t GFCF so I didn’t ask about it) and adult entrees start around $27.99 and go up. Also, they offered my dd a ‘larger’ portion of the child’s mac ‘n cheese plate, and we said yes…for $18.99, who knew? But, the service is phenomenal and the environment is different from anywhere else you go. It wasn’t without its entertainment, courtesy of ds and his behaviors. He loves to shove food in without silverware, and the plain pasta went in so quick, he ended up gagging. No more pasta. He tried the chicken. Didn’t like the consistency. No more chicken. The grapes and strawberries were a little more successful…a little…but his favorite was the rolls and butter. (Again, we’re not GFCF so I know this is easier for us than it would have been otherwise.) The cookie, decoration from our Creme Brulee Trio dessert, was not chocolate chip. Disneyland really helps make the whole visit as ‘normal’ as possible, but you’re not without little reminders all evening about the necessary accommodations.

Not sure if I’ll be able to update for a couple of weeks. It depends on our internet access while traveling, but I promise to have some interesting stories to share when we return. Enjoy your fourth of July! (This year, we won’t be spending it with ds hiding in a box in our driveway…not only are fireworks no longer allowed in our city, but headphones and a firm snuggle on my lap have really improved on the holiday.)

Wow, autism’s not welcome anywhere, is it? Gosh, wish I’d known about that when I specially-ordered my child, or I’d have asked for some other more socially acceptable disability.
Nothing says it better than the ABC article itself: Autistic Boy Kicked Off Plane

I’ve read a lot about this on various sites on the net. So much hatred out there, so much selfishness, and the prevailing attitude of “Don’t inconvenience me with that crying, I paid for this flight!” (Didn’t the mom and her child pay, too? Maybe they didn’t like the inconvenience of having their first flight cancelled or the passenger commentary she heard on the second flight? And newsflash, it’s public transportation. You want no inconvenience? Charter a private jet.)

Moving on. I’ve seen quite a few people ask what we parents of autistic kids would want from the airlines. I wasn’t on that flight, so I can’t speak for anyone but myself, but what do I expect from an airline, or what would I expect if my child was having an issue?

1) Compassion and actual patience. I’d expect the attendants to treat my child with as much respect as anyone else on that plane. I’d want to be treated with respect, too, not as though I was some uncooperative moron who couldn’t understand basic rules. I’d want to be treated as though I am doing the best I can for a difficult situation and being trusted to know enough about my child to do what is right. This would mean actually getting out of my face if there were continuous nudges to quiet him down, and give me the five minutes it would take to get him to breathe and calm down. I could then get him back in the seatbelt that he was in until the attendant kept tugging on it, making him uncomfortable.

2) Stop the other passengers around me from making audible nasty commentary. If my crying child was expected to shut up because he was inconveniencing others, I’d expect those others to not subject us to their rudeness. It really does work both ways.

3) Truly give me the help you promised me when I called ahead to tell you prior to booking that my child was autistic. If you couldn’t help me, you should have told me then, when I asked you if you’d help.  Educate your employees about special needs, and don’t discriminate unfairly against a specific disability. If a person in a wheelchair is given extra time to load, I expect the same patience, time, effort and compassion that passenger and his family gets. No disability should be treated better than any others.

4) Know that we really don’t want to inconvenience or upset others. Know it upsets us to know we’re the cause of someone else’s upset. Know that we are embarrassed by the comments and the glares, and that we’re sorry. Know that we’re not selfish, over-indulgent parents, but just parents trying to use the same right everyone else has to get from Point A to Point B as quickly, quietly and safely as possible. Know that we want our child in the seatbelt, and we want him safe. Know that we are doing everything we can, as fast as we can, to make that happen. And know that your continued “are you done yet??” commentary will not help, but could only upset him.

5) We know autism is a puzzle. We don’t always understand it. We know our son looks ‘normal’ so it may seem as though we’re just letting him getting away with things. But know that doctor after doctor has confirmed our diagnosis, and if our child looks normal, give it five minutes, he may not. Know that when he does appear normal, it’s because of hours/weeks/months/years of therapy and working with him to improve him. Know that we are incredibly proud of our children, and we know what a long road they’ve traveled to get where they are. Know that keeping him at home won’t teach him social skills, and he’ll never improve if not exposed to different things. Know that we want him to be quiet as much as you do, but that our approach will work and yours won’t. Never letting him travel doesn’t help him, it only assures you won’t have to hear him cry…but that won’t stop the crying infant across the aisle (whose crying may upset our son, yet we can’t tell them to shut the baby up, that would be rude…so we suffer, in silence, a new theory for some people) and it won’t shut up the passenger in the back who keeps ordering beers and is now loud, and it won’t shut up the woman singing along to her iPod without thinking how we can all hear her.

Overall, we really don’t want special rules. We don’t want to stand out from everyone else. We just want to be able to get in, sit down, give our child a few minutes to prep, deal with any issues, and fly. Just like anyone else. Disabilities are supposed to be protected, but apparently that only goes so far as to not inconvenience everyone. Pretty sad state of affairs. I won’t fly AA, that much I know.

I probably should have posted this already, but the whole church restraining order got to me too much. But, now that I’ve ranted, here’s why I haven’t updated recently. I was on a business trip to NYC last week, and I had a blast. (Should I feel guilty? I left dh home with all four kids and all the associated issues, and there was a day I didn’t even call home!)

I was a bit worried about it initially. My husband leaves for work very early, so it would require my older two teens getting the younger two up each morning and out the door. Ds wakes up early, and he is high-maintenance all morning long. Once he’s at school, the coast is clear but if his routine is disturbed on his way out the door, all hell can break loose. I had to leave explicit instructions on things — for example, how to make his lunch. A paper bag with his name on it. Two juice boxes, only of a certain flavor, not the other kinds, leave those for dd. Use four separate baggies, and fill three with snacks of specific varieties, rotating and putting just so much in each. The sandwich is white/wheat bread with a bunch of turkey and mustard, no cheese. Use the Pampered Chef sandwich cutter to cut off the crusts and make it like an Uncrustable. Put one juicebox and all the food in a bag. Fold over three times. Put a staple in each corner, with room in the middle for him to tear the bag open. Phew. And that’s just lunch.

I pre-made his pancakes and cookies before I left, so breakfast is simply re-heating. Cut them before you put on syrup, stacked perfectly together. His “coffee” (chocolate almond milk) must be in a certain cup at the same time.

Dh picked him up from school daily, and they had fun evenings — ds got homework done early in the week, and they played Guitar Hero a lot, played tetherball, and things went well. He did try to escape his therapy on Tuesday, and Friday was rough, resulting in him breaking a special ceramic box his sister had made him (painted with puzzle pieces and an autism ribbon) a couple of years ago, which I’m sure hurt her feelings. He loved that box, so I know he had to be pretty mad for that to happen. I woke him up Friday night when I returned, and though he was half-asleep, he smiled so big, it was definitely worth it.

The weekend went well, and he’s been oh so compliant, it’s almost scary. His attention span is still short, but when he finds something he really wants to do, he can focus for a longer period of time. He’s fascinated with building block towers and playing with rubber bugs lately, and I am SO thrilled. Anything new, anything with imagination, I’ll gladly step over piles of toys all over my house. Gladly. That giggle? Best sound in the world, ever.

Next month, dh and I are taking all four kids on a cross-country vacation. This means we have to fly. We’d considered taking the RV, but that would take so long to drive, we’d have little time upon arrival to do anything. And with the price of gas, flying is cheaper. (How very sad is that.) I’ve already made my lists of things to buy, to do, to research..and something about autism is on every one of them. Are we crazy for trying this trip?

A close friend of mine is getting married, and we are honored to be invited. With flights costing what they do, and with arrangements as difficult to make as they are, we’ve decided to combine the wedding with visiting my husband’s sisters, their families, and his mom. No need to cue the dum-dum-dum music, these are the cool in-laws. They are actually brave enough, in fact, to offer to let us stay with them the entire two weeks, though we’re staying in VA a few nights for the wedding and to visit Colonial Williamsburg and other historical places, along with D.C. Setting up the trip has been a lot of tedium, but it’s coming together pretty nicely. And it’s even paid for, what more can I ask for?

On my first list, I had to research flying restrictions. I have to be sure my daughter’s Diastat injections are not a hassle at boarding, and it turns out, with the proper documentation, they’re not. Check. Below that was getting all the medications renewed. Check. Talk to the airlines about my son’s dislike for lines and meltdown tendencies when bumped and rushed. Check. Thankfully, the airline was absolutely wonderful (so far) about accommodations — front of the line boarding so there’s no bumping and shoving, and notification to the flight attendant about my son’s issues. (I’m sure when it comes time to board and we’re taken in early, it’ll get us some nasty looks and mutters, but I’d rather that than ds having a meltdown and having to deal with worst nasty looks and outright comments while 30,000 feet over Nevada.)

Another list was Things to Pack to Occupy Kids. Mainly, it’s to occupy ds, though my 13 yod will appreciate the thought. Gameboy, DS, chargers, game case, DVD player, movies, CD player with CDs, crayons, coloring/puzzle books, paper…all in one backpack, also including his medications that I can’t risk going in checked baggage in case something’s lost.

And yet another list was clothing — will ds wear jeans shorts, or do I actually have to go buy him 7 pairs of ‘softs,’ which are basically pants or shorts made out of sweat or exercise material, with little seams and no pockets to rub. Will he be okay without his favorite blanket, and will he understand only one stuffed animal can actually fit? (And will the airline insist on counting that stuffed animal as a carry-on, aside from his backpack?)

So many things to consider when traveling with autism. It’s not only in your head, your thoughts, your mind, but it’s in your suitcase. It’s its own entity of massive proportion. Don’t get me wrong — any/all vacations take advanced preparation, time and money, but does everyone have to worry about their child throwing a tantrum around incompassionate people who may request your child is quiet, or worse yet, an airplane that wants to kick your child off? Am I worrying for nothing? I certainly hope so, but more and more it seems I’m reading articles about special education teachers/aides filing assault charges when a child kicks them or throws something, principals expelling special needs children for behaviors the child can’t control, or the general public just refusing to be around a child that says anything more than “achoo,” even though the most loudest people out there are talking on their cellphones about their sex life, or lack thereof.

Despite it all, I’m really looking forward to this trip. Two weeks of no work, time with just the kids and dh, and visiting with close family, something we don’t have out here. Unconditional closeness, with no judgments or trying to tell us how to raise our kids or what we’re doing wrong, or discluding us due to our son or our parenting differences. Sounds heavenly. Can I leave tomorrow??


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