I’ve been sort of floundering for a good blogging topic. I’m still busy being irate over Common Core. And I’m still fighting the good fight for accommodations for my middle child in school. I had an IEP meeting recently for the littlest one, but she only gets one because she (barely, academically speaking) qualifies for speech therapy through school. Last year the qualifications got much more stringent, and as her “speech problems were not impacting her academic accomplishments”, the county felt she didn’t deserve the tiny bit of group speech therapy she gets. Silly county.
So while I’m busy trying to think of awesome new recipes to share (or awesome old recipes to modify, I have two BBQ sauces on the stove as I type!), I decided to just ramble on for a little bit. Mostly about accommodations, because they’ve been weighing so large on my mind these past few weeks.
If you follow me on FaceBook (or are friends with me in real life, where I talk about this quite a bit as well), you’ll know all about Disney and their new DAS system that replaced the GAC system for children and adults with special needs and accommodation requests. You’ll know how very angry I am with Disney over this change. Not that I am against change. Oh no. I love change. Ask my husband. I change my mind all the time. Almost as often as I change my panties. He would say more often. I disagree. But change should be for the better (like clean panties!). I’ve followed this change since before Disney implemented it last October. We even took the kids to one last “good” trip in September because I had a sneaky suspicion the “new and improved system” would be neither good nor improved. Look who was right. To be fair, I’m sure it works great for some people, and I’m just irritated to be in the group of people it doesn’t work great for. I live tweeted (is any tweeting not live? I tweeted in real-time, maybe that’s the better phrasing) from Disney in January about how the new system was not working for us.
Well, it’s now been about two months since that fiasco, and I’ve finally calmed down enough to compose a letter to Disney, which has been sent.
Did you catch that? Two months. Well, two months, and some phone calls to Disney and some [excessive] ranting on my part. The calls to Disney were actually to plan a big trip in September of this year. A trip I am waffling on cancelling and going elsewhere. Why? I don’t even want to renew my passes when they expire in May. Why bother? My trips are miserable. More importantly, my kids trips are miserable. And if you are about to comment with a “it must be nice to be able to go to Disney even once, even if it’s miserable” please don’t. We don’t do a lot of other things in order to be able to head up there “just because”. I’d put up with riding It’s A Small World all day long if it made my kids happy. I’d move the world for them. Are you a parent? Then you understand. I even tried to plan a Disney trip that didn’t include going to the parks at all. Did you know how much there is to do just at the different resorts? It’s immense. Fishing, biking, boating, parasailing, spas, arcades, dinner shows, the light parade on the lake, mini-golfing, the water parks (which do require passes, but my special needs child seems to tolerate the water parks much more than the regular parks for some reason – he loves water though, and being naked, so a huge pool + swimming trunks is a great time to him, and that might be the explanation right there), Downtown Disney, horse-drawn carriage rides, campfires, movies on the lawn, a million different types of foods to try, I mean, the list is endless. BTW, I do not work for Disney, and I never have. They should totally hire me. Even angry at Disney I love Disney. Except I’m not really perpetually apply enough or un-tattooed enough for Disney.
So I wrote this 1700 word letter (that’s about three pages, by the way) explaining that I have spent 33 years seeing first hand how Disney chooses to handle their special needs guest relations. (Side note, can you believe my little sister would be turning 33 later this year? I know, neither can I.) It explained that I have also spent 33 years enduring the nasty looks and comments from people who think we’re “privileged” to “skip the line” and that I have spent 33 years trying to explain that I would trade an entire day worth of line-skipping to have the ability to be “normal” and wait with everyone else. I explained why their new system doesn’t work for my family, but that I fully understand why it would work for a family that does not have a cognitive disability to blame for the inability to wait. Or the inability to understand waiting. Or causing the sort of meltdown that makes you leave a restaurant right after ordering drinks, or in the middle of eating. The sort that makes you apologize to an entire movie theater and slink out in an effort to not ruin any more of the movie for everyone else.
My kid is pretty functional most days. Ha, so am I ;) But some things are just beyond his scope as far as being able to functionally cope with them, and waiting on endless lines and too much external stimulation are two of those things. Seriously, Disney was an awesome vacation from the everyday where I didn’t have to worry about those things. We did it the right way too – we travel during the off season. We go on low-crowd days. As I said in my letter, if it looked too crowded, we got back in the car (or on the bus, or monorail, or whatever) and headed to another, less crowded park. I’m pretty flexible that way.
So now I’m looking to cancel TheBigTripTM and replace it with a different BigTrip. I’m not renewing our Disney tickets. We’re trading in a year of Disney for a week of vacation. Seems like a good trade up at this point. I’ve looked at Disney Cruiselines. I had Norwegian Cruises recommended to us. We looked at an all-inclusive resort in Jamaica. We haven’t made a decision just yet. Have you taken any big family trip like this? Better yet, have you taken any big family trips with a special needs child? Where did you go, how were the accommodations? Was everything really included, or did you get nickel-and-dimed once you arrived? I’m really leaning towards one of the all-inclusive resorts, but I’m kind of being selfish because I want to be able to let the kids go a little bit without us and do my thing with my husband. But I want to be able to do stuff with them too that doesn’t bore either the adults or the children. I know that this is more likely to happen on a boat than at a resort, or at least the resorts we’ve seen.
We live less than 30 minutes from Disney Land. We have been a couple of times, but neither of my kids seems to enjoy it. As far as accomodations for your children, I have faced this issue repeatedly. What has seemed to work for me is to talk completely void of emotion in the IEP meetings. This is especially hard for me, as I have a vested emotional interest in my kids, but it works like a charm. Every single time the school brings up accomodations, and oddly enough it’s always to reduce rather than enhance the service or accomodation, I say I uderstand and appreciate you position; however, to ensure my child is receiving the appropriate public education, I want you to provide a list of evaluators related to this service or accomodation, and allow me to chose one to give an independant educational evaluation at public expense persuant to IDEA §300.502. Sadly, but they eventually realize they save money by ensuring you have the service you feel necessary, rather than them paying for an independent evaluation each time they want to reduce service or accomodations. They get away with doing this because many parents are just uninformed. I have a family friend who’s son’s speech is much more unintelligible than my son’s. Their son receives 1 hour speech therapy a month and say how nice the school is to offer this; however, my son attending the same school, receives three hours a week. I look at it from the realization these people in the IEP are not comming to my house for Christmas. Eventually the small yellow bus will stop comming to pick my son up for school. Whatever early interventions he gets now, will ultimately have a life long impact for the better or worse. I have no issue with being a thoroughly disagreeable person in the meetings when necessary. I have even on one occation told the school a service in question, they were refusing, will cost approximately X amount of dollars. After legal and administrative fees for a hearing officer in a Due Process Hearing to make a decision should you disagree will cost you approximately Y amount of dollars. Y is bigger than X; moreover, you can not say with certainty the hearing officer won’t make you provide the service anyway. I ask again, are you sure you don’t want to reconsider providing the service. I said all this not sounding like a desperate parent, but more like a matter of fact, monotone, “stepford wife.” You would be amazed at how quickly the service was agreed to. I am not talking about oddities like equestrian therapy or swimming with dolphins, but more along the lines of proven therapies, like speech, OT, ABA, etc…
In case you or others viewing you blog aren’t familiar:
http://nichcy.org/schoolage/parental-rights/iee (a good explination of rights)