So, we go to Disneyland. A lot. Why? Because they are truly autism-friendly, we have annual passes and frankly, it’s fun. I never thought I would be a person that would go to Disneyland all the time, but I suppose it goes to show life leads you in unusual ways.
People think I’m nuts to take three autistic kids to Disneyland until they hear my reasoning. At first, we could only go for a few hours at a time. I had to worry about the kids running off, much to my terror. The Disneyland security is top notch, though, let me just say that. I also got a recommendation from the “lost kid” center that writing you cell phone number in Sharpie on your kids’ arm or leg (covered by clothing) is very helpful, and yes, it works. They will call you. If they are mildly over-stimulated and a little cranky, don’t worry. There are ten thousand kids there in the same condition, so yours is the norm! And it gives me plenty of opportunity to practice with the kids – like personal space, saying no, waiting in line (within reason), and dining.
Also, the annual passes mean that when I say, “If you keep behaving like that, we are going home right now,” I can follow through. If I’d paid five hundred bucks to walk in the door, there’s no way I’m going home early. I remember my dad getting us there right when they opened, and we weren’t leaving until they closed. Period. Don’t get me wrong, the first time I had to do that, Kennedy was having a full meltdown. She was over-stimulated, cranky and tired. It happens to every kid. But she pulled out a few chunks of my hair, scratched me up and almost dislocated Andy’s shoulder. You’d think we’d never go back there. However, she did finally calm down – and there are enough people that they don’t see you coming the next time or kick you out. We explained to a cast member what was going on, and they helped us get her to the car, and drove us there in the van, instead of waiting in the huge tram line. It was horrible. But believe me when the next time I said, “If you continue acting like that, we are leaving,” the behavior stopped. Not everyone is nice. I get it. One of the guys that run the monorail is awful to people with disabilities that aren’t visible. But he’s the exception, not the rule.
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I am searching the internet trying to see what I can find on Disneyland. My daughter is at Disneyland right now with my autistic grandson who is four. He is non-verbal and he well, is autistic. They are not so fortunate as to have season passes, they saved all year just for park admittance. She called me early this morning to say that she was treated so poorly at City Hall and they would NOT give her a pass to get ahead of the line. I was very sad for her. It is not as if the they would be going on ALL the rides. This is his first REAL adventure at the age of four and his introduction to rides would be a little at a time. I heard from her again and he had a melt down and they had ot leave the park. I am so disappointed with the happiest place on earth!
I am just looking to see where I might be able to complain.
We spoke to some friends at Disney. We have a name for you to write to but I don’t want to post this person’s info publicly so please send us an email at Melissa@navautism.com and we will give you the name and address.
Best,
Mel & Andy
Thanks everyone for your inhigst into all of this.Having just found out that our 10yo son has SPD – how was that missed when the opening statement on the multi-disciplinary assessment 4 years ago was his parents “have some concerns regarding sensory issues”? It has taken all this time to find someone who knew enough about SPD to diagnose it. Same child, same sensory issues, just with a lot more defensiveness and associated problems now.A year before that he was assessed as having “above average” expressive and other language skills after going through intensive speech therapy, early intervention units, etc. before he started pre-school. A major improvement from when he was 2 and not saying anything at all. Same child, after a lot of intensive therapy for his “dyspraxia”.Now in year 4 at primary school, he is at least 2 years behind his peers, maybe more. We are in the process of having him assessed as PDD-NOS, even though previous assessments have ruled out ASD (including Asperger’s due to speech delay). What’s the difference? He hasn’t been getting the support he needed at school (or elsewhere for that matter). The PDD label, as much as it frightens me, will help with that.What will he look like in 5 or 10 years? I really don’t know, but I am pretty hopeful about this. It’s a roller-coaster though. I reckon the therapy he is getting now will make a big difference. Certainly he’s happier most of the time. Getting the right support at school should also mean that he is able to learn again. I’m convinced he can do this. It’s not easy though.
You know what, I’m very much incilend to agree.
it has impacted his cigtonive functioning, I guess college is not an option for him. his son wants to join the military but Dad says no way the military will take him. He’s worrying about long-term care, because he does not believe his son can be self-sufficient. that was a hard blow and depressing. I keep looking for the crystal ball. I got excited the other day because my son said “I love you” … SPONTANEOUSLY! But at almost 32 months we’re not really having real conversations like I am with his twin brother. I say “who were easter bunny’s helpers” and although he knows their names he answers “carrot.” I used to obsess over language and now I obsess over reasoning ability. this past week I’ve been trying to figure out how come nobody talks about what the milestones are that lead to reasoning ability. do you think language and reasoning are synonomous? I don’t think I do anymore. Sorry for the ramble. But sometimes I do think this: that (a) there are too many links between autism and motor issues, and my son has the latter for sure (and I think since I’ve focused on those there have been collateral improvements in other areas, by the way); (b) the eides say that both spd and autism involve problems with long-distance connections, I think it must be those fast-spiking interneurons; (c) it does seem sometimes like my son although sweet and affectionate, has these kind of jumping random associations between things rather than … I can’t describe what I want to, but appropriate categorization comes to mind. It also makes me wonder … what would he have been like WITHOUT the intervention? How easy would it have been for me to LET him tune out? would he have seemed more autistic? Long before the dx, I was doing all the heavy lifting in his development. It was like I was doing floortime and didn’t even know it. I’m sorry this is more of a ramble even than usual. someday I’ll get it together to start my own blog. Maybe one of us should start a website devoted to PDD-NOS. (ps — did I tell you about the blurb I read that they used to dx kids like mine anyway with a combo of adhd and something related to motor?)
Father of Four, thanks for sairhng, and I like that you’re optimistic. I’m unflappably optimistic myself, and I’m not even sure why. I think the more you understand, the better-targeted the treatment, the better you feel about the future.Kris, yeah I saw that. The consensus is that the 1 in 91 figure is not entirely reliable because it was a phone survey or something like that, and that the increase is attributable to diagnosis and the liberal application of the label. Does it make me angry or roll my eyes? Not really. But from a policy perspective, I do think there’s an issue of just distribution of resources when the net is cast so wide. In other words, I doubt that the children who need resources are fully-served, and probably some children who don’t need significant interventions are being over-served. Anyway, I’m rambling. Is the fix to make the net less wide? Or is the fix to be a little smarter about prescribing interventions? I tend to think it’s the latter so that the mild side isn’t siphoning off valuable resources. What are your thoughts?