Opinions of the Special Needs Book on WDW?

[Mike Bartenhagen]

I am wondering what others opinions are of the Passporter's Guide to Dinsey and Special Needs. I just got done looking at the All Ears weely email and it had the following adverstisment in the e-mail:



Are you on a Special Diet? Do you have Allergies?

If so, you have Special Needs!

That's why PassPorter's Walt Disney World for Your Special Needs,
written by Deb Wills and Debra Martin Koma, is for you, too!

"The info is very thorough and detailed, and really has something in it for just about everybody.
You may be surprised by the wide range of special needs this book addresses.
I'm sure there are many people for whom this book would be especially helpful,
but who might dismiss it as not being for them because they never stopped to
consider that they have a 'special need.'" - Amy Warren Stoll


It seems to me like they are really misusing the term "Special Needs" in an attempt to sell books. Look at the second line.... "If so you have Special Needs!" It's as if the person has won the lottery. As the father of a child who has about 100 seizures a day and severe cognative delays I think the title of this book attempts to dumb down the term Special Needs and I hope they don't sell any of the books. I don't know who Amy Warren Stoll is but her comments are almost comical. If she had a child that went to therapy several times a week, was in special classes at school, possibly required a wheel chair for transportation, was well know at the local hospital, etc. as many of us do she wouldn't have to stop and "consider that they have a special need" it would be pretty obvious.

Mike

 

[SueM in MN]

When it was announced that they were writing the book and they were soliciting people to contribute to it, there was a thread on this board about just this subject. Many people who had/have children who had serious disabilities felt as stongly as you about the subject. I know some people posted they were very upset that just having a small child was considered a 'special need' for the book. That information was available to the writers/editors.

I was one of the peer reviewers of the book and I also have problems with the term "Special Needs" being stretched to cover anything and everything. I did make my concerns clearly known to the writers/editors, especially a concern that many of the people who could benefit most from the information might avoid the book because of those feelings.
They chose to continue with the 'Special Needs' definition they started with. Despite my attempts and the attempts of other people on disABILITIES Boards thread, I really don't think the writer's understood that the words "special needs" are kind of emotionally loaded words to many people. Because they didn't understand that, they used the 'dictionary meaning' of the words, which did fit their subject matter, but not the way the words are typically used by parents whose children have "Special Needs".

Would I have done it differently?
Yes, but it is not my book. I was asked to provide information/input and I did what I was asked and gave my best attempts to provide information I thought would be helpful.
I feel the end product was a very ambitious undertaking and it does have a lot of good & helpful information. Some people may be very 'turned off' by the title because it almost seems to minimize people's needs by trying to include everything in the same definition.

 

[Mike Bartenhagen]

Thanks for the reply Sue. I was also involved in the past thread and had kind of forgotten about it but this ad struck me wrong. Especially the line that said "If so you have Special Needs!" I will guarantee you that when the doctor first explained to my wife and I that our son had Infantile Spasms it wasn't a joyous occasion as this sentance might suggest it is when you find out you or someone close to you has Special Needs.

BTW: My wife prefers Diet Coke to Diet Pepsi does anyone know if her special need is covered in the diet section of the book (haha).

Mike

 

[Selket]

Hmmm....I guess my son fits the blurb for the book - he is type 1 diabetic and has a severe peanut allergy. It was a joyous moment to find out those things either! Yet I am thankful that his needs are not as serious (is that the right word? as comprehensive or something) as other folks.

The book doesn't appeal to me at all because it seems like "special needs" are so all over the place that my son's "special need" rarely coincides with the special needs of others who are autistic, in wheelchairs, etc. Rather like this board. I mean folks who post here often have rather different issues.
And there are some with temporary needs - broken legs, chemo, surgery, pregnancy, etc. Certainly people with special needs are not like comparing apples to apples.

What I'm curious about for those who have seen the book, is that is there enough info in there that is applicable across the board? I wouldn't think the book would have enough in it to make it worth buying for us. It doesn't take a huge amount of chapters to tell someone about how to handle food allergies at WDW or diabetes for that matter (type 1 or 2). I would think most of the book deals with mobility issues but ? It just seems there wouldn't be enough info in there for anyone to buy a whole book for.

 

[MightyMom]

Now now... don't hold back.... tell us how you REALLY feel about the book!

I haven't personally seen the book. Prior to our trip earlier this year I kept thinking about buying it..... but I never did. Why? You ask? I wondered how much would really apply to my son who has cerebral palsy and uses a wheelchair. It seemed like "special needs" just mean SPECIAL needs. I didn't feel I would get a lot out of it.... so I didn't buy it.

You're right about the advertisement. It seems insensitive..... kinda like.... WOOHOO.... you can join the special needs club! I'm sure the editors didn't mean to be insensitive.... and maybe our point of view will be filtered down to them. On the same token, perhaps we are viewed as overly sensitive. who knows. But I see where you're coming from.

 

[SaratogaShan]

My take on this book is that the authors genuinely wanted to help people with a wide variety of needs enjoy walt disney world to the fullest extent possible when vacationing. Not everyone defines "special needs" the same. Also what may not be a "special need" at home in a familiar evironment with everyday routine may very well turn into one at Walt Disney World unless you are prepared. Example: many people with food allergies would not label themselves "special needs" but they do have an out of the ordinary situation at WDW tring to plan for safe and enjoyable meals. I just can't see where the authors are trying to minimize serious "special needs" by including others not so serious. They included any situation that would take extra planning and information to avoid problems while on vacation. Could they have worded it different/better? Possibly.

 

[boosmom96]

I did buy the book before our trip last fall. I was very disapointed in it. My DD has CP and is non-verbal and in a wheelchair. It had very little practical info for dealing with her needs. I found it really odd that no where in the book was it mentioned that I could go to first aid and use the beds there to change her diaper. (She's 9 and way too big to fit on the changing tables in the restrooms and baby stations.) The book could be helpful for some "special needs" but I thought it was pretty useless for dealing with my DD's "special needs". I certainly wouldn't buy an updated version.

 

[binkyboots]

I personally wouldn't buy this book... or any book with suggestions for "special needs" visitors to wdw, why?

everybody has different needs, my dh has epilepsy, cp, leg ulcers, issues with getting overstimulated by the heat, crowds and noise, he likes to hug and chat to people, he is unique! his fits are not the same as somebody elses... his pain, need for rest, amount he can process, these are his alone, everyone else is different.

I guess I may not be saying it well, I think I've found more useful information here than I could ever find in a book... I condensed the tips from this board that applied to us, added the information disney could give me, a little of my own experience and made my own "guide" to disney for our needs. it's two a4 pages that I'm happy to post to anybody who might want it, free. it worked for us, dh in his wheelchair, me unable to eat solid foods and with type 2 diabetes.

I guess for nut allergy sufferers, diabetics, lactose intolerant folks, etc charts showing what meal contains their trigger substances, carb counts, whatever would be really helpfull, but I suspect you can get that info from disney for free.

and yes, the tone is off, it goes without saying that I'd swap my world for one where dh was healthy in a heartbeat! he has special needs, we deal with it, but it's not a joy, it just is.

 

[Selket]

I guess for nut allergy sufferers, diabetics, lactose intolerant folks, etc charts showing what meal contains their trigger substances, carb counts, whatever would be really helpfull, but I suspect you can get that info from disney for free.

Is THAT information actually in the book? Then I might get it - heh As far as I know Disney puts out very little info on carb counts for their meals.

As for info on what products have nuts - that changes so anything printed in a book I frankly would not trust. The only way to get up-to-date info on that is to talk to them shortly before you go.

I do agree that this board is more helpful because, as stated earlier, everyone has different needs if with the same diagnosis (as Sue likes to say and I'm paraphrasing correctly I hope).

 

[tiggerUK]

mike

this is off topic so i apologise to the moderator if i shouldn't post it here??

have you looked at the ketogenic diet? i care for a girl age 11 who had a diagnosis of west syndrome (infantile spasms) which then became lennox gastaut syndrome. she had 700+ (including sub clinical) seizures a day and was basically in continuous status. since doing the diet she has around 3 - 5 a week. they all occur on the same day within a 2-3 hour period.

search google for matthews friends and you will find a great website hope this helps

 

[Mike Bartenhagen]

Broc was on the Keto for about 2 years and while it did help with the intesity of his seizures it didn't reduce the number. Broc was actually on the diet during our last trip to WDW.

Mike

 

[SueM in MN]

Is THAT information actually in the book? Then I might get it - heh As far as I know Disney puts out very little info on carb counts for their meals.

As for info on what products have nuts - that changes so anything printed in a book I frankly would not trust. The only way to get up-to-date info on that is to talk to them shortly before you go.

I don't remember reading either of those things in the book.
And, when people on this board had actually talked about writing a book (in 1999, oh, so many years ago), I saw the 'things change so quickly' as a good reason why not to write a book.

I do agree that this board is more helpful because, as stated earlier, everyone has different needs if with the same diagnosis (as Sue likes to say and I'm paraphrasing correctly I hope).

You got it exactly right.
One of my examples is my DD's dance class. There are 12 students, all using wheelchairs. But, boy are their needs different; even among the 5 young ladies who have CP, they are very different and have very different needs.

Everything is like that as far as I can see. If you look at 5 people with diabetes, they will have some common needs, but a 2 year old with type 1 diabetes is going to have a lot different needs than a 50 yr old with type 2 diabetes.
That's one of the things I like about this board. It's lots of people sharing what they know and people can take whatever is helpful, or ask for more opinions or whatever.

And, just for good measure, here are some reviews of the Passporter Books for Your Special Needs:
epinion
Amazon

 

[SueM in MN]

I did buy the book before our trip last fall. I was very disapointed in it. My DD has CP and is non-verbal and in a wheelchair. It had very little practical info for dealing with her needs. I found it really odd that no where in the book was it mentioned that I could go to first aid and use the beds there to change her diaper. (She's 9 and way too big to fit on the changing tables in the restrooms and baby stations.) The book could be helpful for some "special needs" but I thought it was pretty useless for dealing with my DD's "special needs". I certainly wouldn't buy an updated version.

My DD also has CP and is non-verbal and I had a lot of suggestions for things I thought would be helpful to someone in the same situation.
I'm not sure if the facts about First Aid are somewhere in the book and you just didn't find them. I do know I included it in my suggestions. But, as big as the book is and as many things as it is trying to cover, some things were not included (which includes a number of the things I had suggested).

 

[dclfun]

From what I have heard/seen the book is virtually useless for most guests who are trying to find a specific answer to a specific concern. There are no measurements of heights of beds, toilets, sinks, shower chairs, space in a room, space in the bathrooms, discussion of different types of rooms and how they are "labelled" by CRO, space in a food court queue, turning radius..on and on with specifics that are needed- and this is just for a mobility challenged individual. Then there are visual, hearing, learning, emotional, dietary concerns. I agree- better to have a discussion on these boards than to try and find an answer in that book.---Kathy

 

[Mike Bartenhagen]

Example: many people with food allergies would not label themselves "special needs" but they do have an out of the ordinary situation at WDW tring to plan for safe and enjoyable meals. I just can't see where the authors are trying to minimize serious "special needs" by including others not so serious. They included any situation that would take extra planning and information to avoid problems while on vacation. Could they have worded it different/better? Possibly.

One could argue that everyone that goes to WDW requires extra planning to avoid problems while on vacation.

There has been many times when speaking with people I have told them that I have a 4 year old Special Needs son and never once has anyone said "Oh, is he a different religion than you?" or "Is he a vegetarian?" Nor did they ask if he were pregnant, a recovering addict, or spoke a foreign language. All things that fall under the heading of Special Needs according to this book.

I usually don't worry about labels and things like that but I just think there may be parents of SN kids, who don't need an advertisment to let them know that they have an SN child, purchase this book thinking it is packed full of tips for taking an SN child to WDW only to find out a lot of the pages are full of information that really doesn't pertain to SN kids.

I think that Sue's comments in the last post says it very well. As a mother of a Special Needs son who has traveled to WDW she had some information that she felt would be valuable to other parents of SN kids traveling to WDW but because the book is trying to cover so many things several things that may have helped the parents of SN kids had to be left out.

Mike

 

[Mike Bartenhagen]

mike

i care for a girl age 11 who had a diagnosis of west syndrome (infantile spasms) which then became lennox gastaut syndrome.

You should come and join our forum at my son's website: www.infantilespasms.com There are alot of parents and caregivers of kids with IS and LGS and we actually have a lot of parents from the UK.

Mike

 

[dzorn]

Sorry to disagree with everyone, but I thought the book was wonderful. I try not to get to hung up with labels. They always mean different thing to different people. The book may not have covered specifically everything I needed, but it made me think of issues I would not have realized and then I could go obtain the information. Things change all the time and if information is too specific it will probably be out of date by the time it is published.


Denise in MI

 

[cquick]

Now now... don't hold back.... tell us how you REALLY feel about the book!

I haven't personally seen the book. Prior to our trip earlier this year I kept thinking about buying it..... but I never did. Why? You ask? I wondered how much would really apply to my son who has cerebral palsy and uses a wheelchair. It seemed like "special needs" just mean SPECIAL needs. I didn't feel I would get a lot out of it.... so I didn't buy it. .

I agree with both Mike and MightyMom. I have a 28 year old son with cerebral palsy, seizure disorder, low vision and mental delays. I think the book is more for the "unusual" special needs, such as dietary needs. Those of us with more severe problems with automatically seek out assistance right away.

 

[Zurg]

You can call it anything you want if you help out. I think it would be special if anyone got me what I need to deal with type 1 diabetes. That is carb counts and Disney has a long way to go to be even remotely helpful in that regard.

a 2 year old with type 1 diabetes is going to have a lot different needs than a 50 yr old with type 2 diabetes.

That's the truth!

Type 1 and type 2 are SO different in the level of intensity it is misleading to use the same word for them. IHMO a lot of the problems T1 families face are the result of people who know a type 2 and assume it is the same thing.

 

[Talking Hands]

You can call it anything you want if you help out. I think it would be special if anyone got me what I need to deal with type 1 diabetes. That is carb counts and Disney has a long way to go to be even remotely helpful in that regard.

That's the truth!

Type 1 and type 2 are SO different in the level of intensity it is misleading to use the same word for them. IHMO a lot of the problems T1 families face are the result of people who know a type 2 and assume it is the same thing.

I agree completely with that. LIke the chef that it was acceptible to offer me a rice krispy treat as a dessert. NO way I would touch something like that because of the high carbs. Btw most controlled type 2 diabetics actually do stricter carb counting than the type 1's I know. unfortunately I know few type 2s that really control there blood sugar well.