Autism Watch: 2007

Posts Tagged ‘disneyland

BB has a new friend. Well, not entirely new — they met each other a year ago in organized sports we’d signed him up for and they’ve seen each other at school here and there, but it has ramped up a lot in the last few weeks as they’ve seen each other for various events, mainly BB’s friend taking him somewhere. Today, we invited his friend over to spend the day, and wow, is it better than Disneyland and the zoo and a computer game store all wrapped into one.

BB has some social skills. Now, that doesn’t mean they’re good social skills, but he’s trying. He plays well for a while, taking the lead, and when he doesn’t get his way anymore or he’s just overwhelmed, he heads back inside to play on his computer. Alone. He wants to have his friend, so after I remind him that leaving him alone out back won’t generate return visits, he heads back out. After a sigh. But I think I made a dent.

His friend is being picked up any minute now, and it’s probably just about time. BB’s mood is wearing thin, the kind of thin where we almost are at a loss and don’t mind if he finds that spending some time in front of his tv watching his DVR’d episodes of Dragon Ball Z and Pokemon is what he wants to do next…for an hour or so. It’s the kind of thin where we’re afraid he’ll offend someone by his impatience or he’ll be rude under the guise of being ‘honest.’ Still working on that one.

Our next step is probably Cognitive Behavioral Therapy, in addition to more advanced social skills training and behavioral therapy at school. And for me? Other parents to talk to, those who can understand what we deal with daily and talk to me without judgment. Oh boy, do I need that…

Monday’s looming large now, and with that comes an early morning. 6am rise and shine and at school by 7:15 in time for his new ‘job’ helping the school on a special project. Just like any parent of a school-aged child, there’s the regular routine, and there’s the feeling of not looking forward to the next five days of rushed mornings, packing lunches, signing notebooks and listening to him vent the entire ride home each day about every.little.thing that occurred. (Who needs a tape recorder when you have BB? I get the perfect play-by-play minus the video, except his explanation is pretty detailed and I can usually envision his stories.) It’s only 6:22pm and I’m already tired just thinking of it. Or maybe that’s just the twitch in my right eye coming back.

As our kids grow, in some ways things improve. In some ways, things get worse. When I can’t hold him and restrain him enough at 75 pounds, what happens at 85? Years ago, I went to a parent support group not long after BB was diagnosed. What I expected was everyone talking about their experiences and people nodding and then going on to the next person. What I needed was being able to hear other moms of kids BB’s age talk about their situations and confirm we weren’t on our own or that we weren’t the only ones who had to make nothing but dairy-free pancakes cut in perfect squares with 3.5 tbsp of maple syrup in order to prevent a pre-school meltdown. What I got was a room full of people all dealing with spectrum kids from severe to mild, sharing their stories while others commiserated, laughed or gave advice. Sounds great, right? It was, until we got 1/4 of the way around the room and reached the parents with kids in high school. Their stories were scary. I was so busy getting through one day at a time that the future hadn’t occurred to me, so when I heard more and more parents talk about how things were just getting worse, how their child wouldn’t get into the car for school (or get out when they did manage to cajole him into getting in) or how their child yelled and they had to call the police to stop a rage, I was devastated. The cookie I ate was boiling in my acidic stomach as my eye twitched a little faster. I think I stopped breathing for a several seconds too long, and I wanted to run to the bathroom, the foyer, the car, anything to get away, except I was in one of the seats that allowed for no escape without disruption. So I sucked it up and let my mind boggle and ‘go there’ while I listened and realized that it was all just beginning.

So many things are better since that day. I have a boy that’s often indistinguishable from his peers for a while, unless you look close, and he’s no longer hurting himself…often. But that doesn’t mean I don’t worry about the future. I know the mantra is to not worry beyond today, as each day brings its own worries, and to let go and let God, but that’s a work in progress. I too am a lot better since that day, but I’m still Mom, and I still have to remind myself that worrying doesn’t help, action does. Each day, more action to attain more improvement, and the end goal? Happiness for BB. And not just on days we visit Disneyland with the coveted passes I’ll be buying within the week we move back, but all days.

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This last week, my husband and I have been on vacation. In a word? Bliss. I don’t care if every minute is filled with mundane errands and getting up early to get ds to school; just having the time off together, during our own thing, our own schedule, is fantastic. But, the week has flown by and next Monday will come all too quickly.

During this past week, we’ve been away more than we’ve been home. We’ve gotten 80% of our shopping done, with another 15% tomorrow, leaving the last 5% for next week. We, or shall I say I, have gotten most of the baking for this Saturday’s open house done. Meanwhile, my house smells heavenly. (But I’ll leave out the part where I’ll be up all night baking the doughs we put together….all five MORE of them. I already have three bundt cakes of various kinds, and 15 loaves of fancy breads in the freezer.) It’s been a very busy week.

So, getting down to business…ds has had a busy week, too. First, a birthday party update. SUCCESS! Five kids from his class showed, some who hadn’t RSVP’d, but whatever, they were there. Two other kids showed up, and so did our friends we invited, and away we went. Games went well, we played mini-golf, and he had so much fun, presents took a backseat. Expensive, eh, $300 including cake, but we didn’t have to clean our house before or after, and ds had the party he wanted. Add that to the convenience level and we’re happy. (And no meltdowns at the party!)

We spent a day at Disneyland. Accommodations there were, again, amazing. We used our special assistance pass and got on every ride ds wanted within a very reasonable wait time. (And I still kicked everyone’s butt on Toy Story Mania. Ha.) Towards the end of the day, ds was getting a bit overwhelmed and when I expressed my negative opinion about getting knocked down when he pushed his stroller backwards into me as I was crouched on the ground tying my shoe, he refused to talk to me for almost an hour — even though I was the one who ended up on the ground. It happened again later when he refused to stop pinching his sister, but dh stepped in each time and lightened the mood. We visited the Tiki room, and while we sat in the back..in the corner…it was still enjoyable. A shout-out to Rainforest Cafe for their birthday party recognition! Ds has wanted the volcano cake for his birthday for months now, and he was excited for it to finally happen. We attempted to go back to Disney <quickly> to visit Woody’s Roundup, a yearly tradition, but the monorail held us hostage. First, the new cars only hold 15 a person, so one train, which only comes every 10 minutes, only can take about 40 people. Translation: you wait forever. Walk. It’s quicker. We wait though, as by then, we’d already invested so much time, we figured ‘how much longer can it really be?’ Ha. They had more in mind. Little did we know, after they squeeze 16 in our car (did you hear that, Disney? They put 16 in a car made for 15. Isn’t that against some safety regs??) that they were putting a second train on the line, and we’d have to wait while they got it on-line. Sure. Why didn’t you tell us that, or do it, BEFORE you load us into a small little tube? Then, we get 9/10 of the way to the station, 15-20 minutes later, only to hear that the second car had some issues with its windows, so we’d need to wait. AGAIN. Same little tube. Same claustrophobic help-we-have-been-kidnapped-and-are-being-held-hostage feeling.  After a 30-minute ‘quick ride’ to the Tomorrowland station, we got off. It wasn’t without some commentary, where those perfect people who were still in ‘happiest place on earth’ mode weren’t approving of comments of those of us who feel a $90 ticket shouldn’t include being detained. Oh well.

However, the day was completed without further incident. Disneyland’s special assistance pass saved the day. We enjoyed the beautiful Christmas castle and music and were glad to have gotten in our annual Christmas visit.

We also squeezed in a dentist visit. After losing the two teeth (mentioned in a prior blog entry) ds ended up with two shapes on his palate, shapes that looked like teeth coming in. He’d also complained his teeth were painful to brush in some areas. While I could have done without the hygienist smiling at us like we were paranoid craziacs when the xray confirmed it was just his palate being shaped funny, I felt redeemed  (the words “neener-neener” came to mind) when the dentist confirmed that we were right to bring him in just to be safe, as sometimes losing teeth can cause swelling like he had, and apparently infection. One point for the parents who pay high rates for good insurance and want to be sure their child’s mouth is safe. And ds didn’t freak, but that’s due mostly to an excellent dentist who knows how to ease his fears by explaining everything to him, addressing him appropriately, and letting him touch/feel all the tools prior to their use.

Then, today. Awards ceremony at school. Ds got a certificate for his grades, one for turning in homework regularly, and one for passing his health/P.E. requirements. He came into the ceremony SO excited. Smiling, dancing, and chatty. Trouble came when halfway through, a teacher reminded his table to be quiet. Poof. Magic words. That was the end of it. When it came time for his second award, he went to the front with his hood over his face. Our Assistant Principal, an amazing V.P., acknowledged it and tried to help, as did both dh and I, but to no avail. He stood for pictures with no face showing. When his name was called for his third award, he refused to move. He sat at his table, head down, while everyone else went on stage. Prompting from us made no difference. He was so upset by then, he was agitated and we had to leave him alone for fear of a full-out meltdown. (And to the lady who went  “Look!” and pointed at him like he was a rare parading zoo monkey eating a banana while hanging upside down and pottying, I really hope you realized that the child’s parents heard you and watched you. We wish no ill upon your child(ren) but you could stand to learn some manners and compassion.) We picked him up shortly after, and after sticking to the ‘no more negative talk once we get to the car’ credo, the day wasn’t so bad after all.

Tomorrow, we finish our shopping. Then, we take ds and a the girls (other ds won’t be along) to see the infamous Christmas lights a city away. It’s a big event every year, where we walk the entire show (after parking a mile away) and drink coffee purchased from a resident we find along the way. We sing carols along with the music pumped from the fancy homes, and talk with our friends, same homes we see every year but we’re nevertheless amazed. It’s going to get down to 37 degrees tonight. 37. I am jazzed. Christmas weather at last. Now, if I could just figure out how to get ds to wear a jammy top, we’d be golden; good thing he likes to wrap himself up in a special blue blanket every night because it’s soft. Tomorrow night will be cold as well, so Amen to getting Christmas weather on target.

Ds stayed in his bed last night — the WHOLE night. I heard him having a bad dream, but he got back to sleep and stayed there. Good thing, I stayed up late reading the last of the Twilight books. Yes, I am one of “those” moms. So what if a few people think they’re mindless drivel. We don’t all need to read enlightening award-winning literary prizewinners. Some of us like fictional books that don’t take a lot of thought, and these books fit the bill while allowing you to pretend you’re somewhere else for a while, because believe me, these books do put you in a whole new environment. Get a grip if you’re anti-Twilight, and go back to your Pulitzer material, Stephenie Meyer’s raking in the bucks so she’s got my vote.

Now I’m off to get more cookies in the oven, and watch a Nascar race on ds’s new Nascar toy race track the girls got him for his birthday. I can hear him giggling from here, and I need to watch his smile light up his eyes. Merry Christmas, everyone. I got my gift already.

Tomorrow I’m going on a field trip with my son’s school. I know a lot of us moms do these things because we should, but I’m really looking forward to this. Ds has had a couple of bad shakes when it comes to field trips, one being the time that his teacher told him they don’t use the restroom during the CHILDREN’S play, so he wet himself, and by the time I was notified, he was literally wet waist to toe. And embarrassed. An awful thing to do to a child, particularly without any real sympathy, and it’s stuck in his head ever since. Can’t say as I blame him. Child or not, it’s pretty embarrassing to have half of your body soaked and the smell leaves no room for error in knowing what you’re soaked with. Why it’s okay for that to happen to a child is beyond me, but I won’t go there. That wouldn’t happen this year, with or without me along.

So, tomorrow at 9am, I board the bus with my son’s class and two others. He’s so happy to have me along, although I have been instructed to sit in another seat. You know, Mom, so I can, you know, sit with my, you know, friends. Okay, I know.

This field trip is to a nature place I’ve never been. And it’s only about a 20 minute drive or so. Perfect on both counts. And I can be with ds in case he has any flashbacks or other ‘out of my comfort zone’ weirdness. I’ll update on Friday, but I think it’ll be fun. I enjoy hanging out with his classmates and helping, so it’s going to be a good day away from work.

On a not-really-related note, his hair twirling tic/stim is at an all time high. We’re talking both hands totally engaged in twirling up sections of hair onto themselves until the knot is inpenetrable by anything other than scissors. Ds, though, just pulls them out when he can’t extricate them otherwise, leaving little hairballs all over my house. It’s a really good thing I am a neat freak. A “cleany.” A spotless house person. Anal.

What to do with the hair twirling? We’re working on re-directing and giving him things to do, but he’s even stopping those activities to double-fist and twirl. The scary part, worse than it interfering with normal daily life, is that he’s pulling out so much, it’s now becoming visible that he’s missing some layers of hair. And he’s got beautiful hair down past his shoulders. (Cutting it’s not an option — when it was short, he’d just pull it out by the root easier. And his eyelashes/eyebrows. Eww.)

A praise is that drop-off this morning went good. He was quiet, but happy. I noticed his jeans were a bit too short, so I’m making a run tonight for some more, just to not give him one more reason to stand out. I didn’t realize he’d grown so much in the last few weeks. (And gained 3 pounds!) I did get a call that he’d gone to the nurse’s office with a tummy-ache, but he didn’t have it when he left, and when I ran into a friend earlier who saw him at school, ds was observed doing fine, so something must have made him anxious enough to want to leave school. I also think he can’t quite communicate his physical feelings sometimes. A conversation a couple of weeks ago in the car, on the way to Disneyland, went as follows:

“Mom, I feel carsick. Are we almost there?”

“Sorry, but we’ve got about another 20-30 minutes. Traffic. And you’re not carsick, you’re fine.”

“No, Mom <insert duh tone here> I really am carsick.”

“What’s carsick? How exactly do you feel?”

“I don’t know, I just know I’m carsick.”

Okay then.

Where to start?

Last Friday, we took ds and dd to Disneyland. We’d postponed it twice over the two weeks prior, due to one of us being sick, and even though I still had a cold, we couldn’t postpone again. After all, Jack Skellington is at Haunted Mansion!!!

Anyway, I think everyone who had a pass but didn’t have tickets for the Halloween event at Cal Adventure was there. I haven’t seen the park this busy in years – and we go a lot. We always get my son’s special assistance pass and then make a beeline to Tower of Terror. Apparently, they were so busy this past Friday night that the Fastpass line was the only one open. When I showed the attendant my son’s special assistance pass, I was told, basically, ‘too bad.’ When I shook my head and tried to clarify, “No, really, where are disabled people being let in line?” He said there wasn’t a line. “Okay, seriously, you have to have a disabled or handicapped access. Are you saying you don’t have one?” I couldn’t believe it when he said “That’s right.” There were no words. I turned around, tried to placate ds with a spin by telling him we could now for sure fit in California Screaming AND Toy Story Mania before the park closed. Okay…sort of.

The rest of the Cal Adventure visit went great. We ate in the Mexican food restaurant (aka beer garden) over next to California Screaming (there’s got to be a reason they put it right there) and headed to Disneyland. The wall of people in line to get in should have clued me in that we’d chosen a bad night. But hey, we have a stroller for ds and passes, what can be bad, right??

We make our way around, only to find that Woody’s Round-up was closed. Wahhh. And ds had a meltdown, too. Took 20 minutes to get him remotely interested in anything else, and we forced him on the Haunted Mansion, where their handicapped option was really long, too, but at least there’s a lot to look at. Leave there, head for Indiana Jones, only to experience a repeat of Tower of Terror. What the heck? I love Disneyland. I’m a huge fan. In fact, we just renewed our annual passes, but I was really disappointed. I don’t expect the park to turn upside down for disabled guests, but to be met with blank faces totally lacking empathy or interest in helping us was a surprise. So un-Disneylike. (So was the 20+ minute wait over at the Matterhorn, in the handicapped line…only two people in front of us, and still over 20 minutes. One day, I’ll actually remember to stop and ask Guest Services exactly why that ride is so bad — are they told to make people in the handicapped line to wait? Or do the line attendants just all figure if we are still breathing, we can wait like anyone else?)

In the long run, the visit was still a good one. Ds loves his ice cream and the chance to walk through Mickey’s house over in Toontown. As a daily player at Toontown.com, he loves to sit on the trolley and talk about Cogs. And we have another trip planned in a couple of weeks, during the week, so we can avoid the massive crowds. Have to visit Woody’s Round-up, you know! (If you haven’t gone there yet, you won’t understand the attraction, but at Halloween and Christmas, they have these huge sugar cookie kits you buy for about $6, and it comes with frosting and sprinkles to decorate. Major fun for my little guy, and a ‘must do’ for every holiday visit.)

Onto the costume fiasco…..

Last week, my son saw a costume in a Party City ad that he just had to have. HAD to have. HAD TO. Nothing else would do. Yesterday, after school, in the throes of a migraine, I took him to go buy it. They had one left in his size, and the mask was missing. Long story short — after an offer of a 15% discount to buy it without the mask, an idea to buy a different costume, or an offer to go to a distant store where they’d hold one for us, we chose driving to the distant store. This wasn’t without a meltdown — he began to cry in the checkout when they said “no mask.” (This, after we’d been shuttled to four different people who all supposedly had the mask.) The woman behind us couldn’t stop staring as though my son was some spoiled brat. (My daughter had a mean, but great comment “Keep walking. He’s not a doughnut.” See, she was rather large and had her mouth completely open. Yes, I know it’s mean, but after a while, you get tired of rude stares and sighs.) The other Party City had it right there waiting for us, and we grabbed it and ran, without the hassle of the other store. (One cashier actually told me “It’s not our fault people don’t put the masks back on after trying them on.” It’s not? Then who’s is it? And a 15% discount? Come on, you can’t sell it without the mask anyway, so why not a bigger break? It was ridiculous, though most people were nice there, just ridiculously disorganized.) So ds has his costume. He’s thrilled, and he ran around the house in it for a while when we got home. That alone made it all worth it…even though I was virtually without makeup and had on those same holey ripped shorts I had during his infamous meltdown at school. You’d think I’d learn to never wear them again, but in the end, really, who cares?? I had bigger priorities, and I had a migraine. So if you’re the lady who stared at me because he was screaming while standing in front of the cash register and slowing down your rush to buy those Halloween decorations and candy in your hands, get over yourself, you’ve still got three weeks to decorate and eat store that candy for trick-or-treaters.

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.)

We spent yesterday evening at Disneyland — got there at 4pm, and were into California Adventure by 4:15pm, and on Tower of Terror, special guest assistance pass in hand, by 4:30. We were moving! (Not that I want to add to my quick lines, but getting the pass in Cal Adventure is much faster than Disney itself, as the line is always shorter. It’s directly to the left when you walk in, at guest services.) Since we always keep our old pass, we just show them and ask for renewal each time, updating the number of people in our party, though they do often ask to see ds, which is no problem. He’s usually so excited to be there, you can hear him a mile away.

After Tower of Terror, ds’s favorite ride by far, we left Cal Adventure, just missing the new Prince Caspian parade. It sounds really cute, but ds only likes parades from afar, for a few minutes, so it’s much easier to get away from those crowds and enjoy the shorter lines elsewhere. Off to Disneyland right away, where we headed straight for Space Mountain and then pizza. My apologies to the sweeper in the area of the Pizza Port; that was my ds throwing small sections of crust down to the birds, though I do think you could have stopped hovering behind the pole and let the birds take it before you swept it up each time. A few rides later, then an ice cream stop (“Yay! Ice cream.” Ten bites into it “I’m full!” so he tries to hit his stomach to make room…honey, that will just hurt…trust me.) A quick wait in line at Splash Mountain, where we found out that children under 60″ are no longer allowed in the front seat. Yay, finally, it always freaked me out. However, that left dh stuck in the front seat — 200 lbs. in the front and a high water level=getting soaked. But, I’d warned him it was late for a water ride, and he insisted we still do it, so laughter replaced my sympathy. Ahem. Sorry, Honey. 😉

Close to 8pm now, so we headed to Indiana Jones, now that ds is finally tall enough. We made it all the way to the stairs next to the loading platform, and the ride stopped. Cue the impending moans and meltdown. A compassionate ride staffer (I’m sure there’s a better word for her, but I can’t think of it right now) listened to my plea for help with a special needs child and a guest assistance pass stuck on the stairs, crowded and really bugged by it all, and maybe worse, having to go potty. She let us use the employee restroom, and promised us quick loading if the ride came back up…but it didn’t, so we and every other person in line headed for the exit en masse. I’m not claustrophobic in the traditional sense, but standing with what seemed like hundreds of other irritated people inside cave-like walkways was uncomfortable. Why is there a wait to GET OUT? Turns out they were giving out fast passes, yet we have the guest pass so we passed up the offer (sorry for the pun) and headed for the exit. Apparently, not only does Disneyland cut back on staffed rides during their weeknights (only one elevator per floor in Tower of Terror, only one side of Matterhorn open, etc.) but they can only afford to staff one exit gate for everyone at closing time. If I could talk to Disneyland, I’d let them know how much we truly appreciate the guest assistance pass, which is a lifesaver — we couldn’t do Disney without it — but open up the staffing again so more rides are open (slower nights should mean less wait for rides, yes?) and open up more exit gates, especially towards the side where you actually meet the tram.

We love Disneyland. My kids love it. It is not the happiest place on earth though. My heart went out to a family I saw when we literally ran into Goofy on Main Street. Three boys ran to Goofy, got their pictures taken by parents who can’t snap fast enough since there were tons of others waiting, and then my kids ran to Goofy, got a high five, and we turned to leave. Then an older boy, probably mid-teens, ran to Goofy, begging him to wait. I don’t know what the politically correct word for him was, as it seems to change daily and different parents have different words depending on their views (autistic? person with autism? just one example) but this boy was clearly challenged..and obviously so. However, that didn’t stop some other mom from frowning and shaking her head. Those are the times I want to really ask her what she’s doing at Disneyland, a child’s playground for the most part, if she can’t tolerate kids being kids…and to open her heart, and have some compassion. The boy/young man didn’t want to be left out, yet due to his size, he probably was. I wanted to hug him, then hug his mom, but I never saw her in the crowd of cameras trying to be sure their child was next, to heck with a line. Times like that make me sad that society is so harsh, and selfishness abounds.

Then comes the best ride of the day…the tram ride. Pushing and crowding to get on, and kudos <not> to the lady who sat with us, the lady who decided that she needed that last smoke (in a non-smoking area, on a non-smoking ride) more than my kids needed clean air. Like they don’t have enough issues. And then she couldn’t even apologize for rubbing her cigarette on the seat as she sat down, spraying both my kids with red ashes. That’s okay though, when I said “Dumb place to sneak a cigarette,” at least she didn’t argue.

All in all, a really good visit to Disneyland, though only four hours. It’s longer than other visits though, some where we’ve made it as far as Main Street before ds decides he wants to go home. Sometimes it’s because he’s had a potty accident and doesn’t want to tell me…others it’s because they don’t sell his particular liquid of choice (lemonade — it’s there, just not all over)…others, it’s just too loud and he’s done with lines after just waiting to get on the tram. The closest we had to a meltdown last night was when we refused him root beer when we found the only brand they sell contains caffeine, a no-no for both him and my daughter with seizure disorder. By the end of the evening, he was running off and not listening, in his own world yet happy about it, completely overstimulated. Getting him calm for the hour ride home was iffy in the beginning, but he eventually pulled out his DS and played. And we didn’t have to stop to potty all the way home!

If you get the chance, don’t let the idea of a Disneyland visit intimidate you. Talk to Guest Services, and get their help. They are truly the only park I go to anymore that allows 100% help for our kids when it comes to lines for rides, shows, characters, etc. And we’ve tried many, only to completely cross Knott’s Berry Farm and Six Flags off our list, as they don’t accommodate autism — “We wouldn’t want to upset our non-disabled guests” by basically allowing those of us with disabled children to “abuse” the system. What crap. Sea World is good, too, though you still have to wait in show lines and get no real help there.

Go Disney!

 

So much to blog about, so little time.

The last week has been a rollercoaster — up, down, up, down, with a curve thrown in here and there. We’re five weeks casein and dairy-free, with no visible difference. We’re not giving up, but it sure isn’t encouraging. Maybe my son is in the percentage of non-responders, or maybe it takes longer than five weeks? He’s never been a big dairy person, so I’m betting that he’s a non-responder. I still stand behind the GFCF diet — I know too many people whom it has helped — but I do believe that no matter what is said, it does not visibly help everyone. Internally? Who knows. Ds is still having potty accidents, still isn’t ‘regular,’ and we honestly see zero change, but it wouldn’t stop me from recommending to others that they try it, as they may just find their child does improve.

On to the next thing. We made the difficult decision recently to try our son on Risperdal. If you read my blog regularly, you’ve seen my son’s tantrums and meltdowns are worse. The mood swings are horrific, along with the self-injurious behavior, and I’m tired of being hit, bit, kicked, and having ds’s sibs having to tolerate it as well. And hearing him yell to all of us how he hates us, hates himself, wants to hurt himself, wants to die, isn’t liked by anyone, etc…I really pray this medication helps ds get some control over himself. I know he can’t want to be this way. On one hand, it’s heartbreaking to have to make this decision, but when you get to the point where you need to try it, for your child, I think you’ll know it. You need to make that decision for yourself, not for anyone else. I’ve run into my share of ‘you don’t need to medicate your child’ people. That’s fine, they don’t have to medicate their child, they’re right. But I get to make that choice for my own son, and I’d prefer this medication over what he’s doing to himself otherwise, and if this helps him be happy, who has the audacity to say it’s not worth it? Educate yourself on the side-effects and be ready for what may happen as best possible, but in the end, make the decision based on your own family alone.

Until we see some change with this medication, we won’t be dragging ds to any birthday parties. I also won’t be taking him shopping or to other loud, crowded places. It really is that bad. So far, we see more compliance and less anger, so we are continuing to pray this medication holds the key to future improvement, along with continued behavioral and social skills help. Picking your child up from school, and listening to him sob quietly the whole way home…no child should have to feel that way. No parent should have to worry if their child is going to make it through a school day without feeling the entire class hates him, that they are all teasing him, or that everyone’s laughing at him, tattling on him, or trying to kick him away from their lunch table. True or imagined, is it really any better? Something needs to change.

Where will I take my son next week? Disneyland. Yep, Disney, even though it’s loud and crowded. The sensory input from the rides seems to overshadow the downsides, at least for a while, so we’re going to head down again, and as always, get the special assistance pass. SO well worth it. If your child is disabled, autistic or otherwise, Disney is wonderful in dealing with special needs children, so don’t hesitate to ask at Guest Services for the help you and your child(ren) need. Without that help, our annual passes would shrivel up in a drawer somewhere, a lot of wasted money, but instead, those passes are now fun, family-oriented Occupational Therapy.

This week, ds has an orthopedist appointment. We want to see if he still has fat feet or pronated ankles or rotating knees and hip. The whole ‘my legs hurt’ issue is one we definitely want to clear up before he’s growing more, and this appointment should help us determine whether or not there are any real problems or if this is just another part of autism spectrum disorder, as one doctor has told us…but we’re not quite ready to just leave it at that if there’s something we can do to help him feel better.

Back to work now — and go vote!


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