Hope is a Journey….

Dear Disney…

Dear Disney,

I would like to take a moment and thank you for the joy you were able to give my children the last time we visited.

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I can’t begin to tell you how wonderful it was to see joy scribbled all over their faces….IMG_1079

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Last year, after a particularly tough time for all of us (medically speaking), my daughter had only one wish….to go to Disney and see the Villains during Halloween.  We scrimped, we saved, we planned – and our entire family went….it took a lot – but we made it happen for her.

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It was a magical time for all of us.

You see, vacations like these are truly gifts to us.  My family battles Mitochondrial Disease, Primary Immunodeficiency Disease, Autonomic Dysfunction, Seizures, Episodic Ataxia type 2/Familial Hemiplegic Migraine, and more.  Life is not easy here on our side of the street, but it is truly full of blessing.  We know how priceless each moment is, and we treasure those moments with the knowledge that nothing is certain (for any of us).  While we try to inject normalcy, fun, and laughter into our every day life, the medical piece is often tough to avoid or deny – and so we do our best knowing that it’s just (in the words of our kiddos) ‘Not fair.

Being able to take a trip like this is a great challenge for families like ours for many reasons.  One reason is that our household incomes are typically strained due to medical expenses, lack of being able to have 2 working parents (one needs to be able to take care of the child(ren) when ill, take to medical appointments…and, in some cases – being home is necessary because the child or children are homebound because they are medically fragile – like ours were for 109 days straight – and then, while they could leave the house after that point, they still couldn’t return to school – and the total time between the last time they were in school to the first time they stepped foot back into a school was 257 days).
While many might say, ‘If you can’t afford it, don’t do it,‘ Well, I would hedge to bet that a good portion of those folks don’t live the lives we do – uncertainty from one day to the next, nor have they had to watch their child(ren) go through unimaginable struggles.  To us, being able to give our child(ren) something magical and memorable is worth more than anything in this world….so we do what it takes to make it happen.

Another reason planning a trip to Disney is a challenge is that life is unpredictable (for all of us, yes – but for families like ours…even more so).  From one moment to the next, you just have no idea what to expect – illness, crisis, meltdowns….you name it….it all dangles us on a very tight and precarious thread of uncertainty…so planning things for ‘far‘ in the future are often difficult and a task that can be daunting.  Just to get on a plane alone, you need notes from doctors regarding all the equipment you are taking with you on board….never-mind all the ‘contingency plans’ that need to be in place should an emergency arise while you are away from your medical team.

Disney has always been a place of joy and happiness for all – and the one and only reason we went above and beyond to grant my daughter her ‘wish‘ in 2012 was because of our wonderful first experience in 2009.  We knew that Disney would help make our visit as accessible, memorable, and magical experience for us – even with all our challenges – as every other child who entered the park.

We were blessed to be able to use the “Guest Assistance Card” for our trip.  I went to the Guest Assistance Center armed with letters and protocols from all of our physicians – yet the staff never even asked to see them or either child – we were just handed 2 passes with a bunch of stamps on it.
We honored the rules of the pass, we appreciated the pass…and we did not abuse it.

For us, it meant that my 2 children who have significant medical challenges (as well as some emotional ones) would be able to actually experience the magic of the park fully.  They were able to do short waits in shaded areas, we were able to take the wheelchairs through the exit and be able to ride on rides that had no alternative handicap entrance, we were able to skip long lines allowing us to only have minimal wait times (which was great in the heat and chaos – both of which were nearly too much for my children even WITH the pass).   And even with all of those wonderful things in place, it was sometimes still too much.IMG_9949
BUT, when all was said and done, both kids had a memorable experience – and our family was able to put the focus on FUN instead of all the other daily stressors we generally have to deal with – they were still there, but it wasn’t our focus.  I can’t put into words what that memory means to us – especially since things have changed so much for us medically in the past year.

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This week the nation is buzzing about your elimination of the Guest Assistance Card and your implementation of a ‘new way‘ of doing things.  My assumption is that story on the rich and entitled folks hiring disabled individuals so they could skip to the front of the lines was the catalyst in this move.  I’ll reserve my opinions regarding these people – because, as Thumper said it best, “If you can’t say something nice….don’t say nuthin’ at all.”
I’ve heard several different versions floating around of what the ‘new way‘ will be – and I am not sure which of them is the actual way you are going to do things,  but I have to tell you, Disney….I’m not impressed – not at all – not with ANY of what I’ve heard as your ‘new way‘ of handling things.

For those who are unaware – the ‘new way‘ has been described as basically a glorified fast pass – meaning that those with disabilities (no matter what type) will be allowed to use the pass for one ride at a time – you’ll get a return time – and you can’t use the pass again until that ‘return time’ has passed.  In the meantime, they tell you that you can enjoy your wait time by browsing, walking around, seeing a show, watching a parade, finding a ride with a shorter line.   In theory, some would say it sounds great, right?  WELL….for families like ours….NO.  Every precious moment matters – our kids can’t last ‘all day‘ in the parks like most  – we often don’t see the shows, do many of the parades, or just putt around…too much energy is wasted on this and then the kids don’t have the energy to enjoy the rides (which is why we go to Disney instead of somewhere closer to home) – and when we leave, we aren’t able to come back later in the day, our kiddos are usually toast and we aren’t able to return to the park until the next day – so waiting in the heat, the chaos, the shows (that don’t interest many of these kids due to their emotional/sensory issues) is just not feasible.

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Honestly, Disney….for our community – life is tough enough – we shouldn’t have to worry about things like this.  Quite frankly, it was the ONE THING I knew I DIDN’T have to worry about when we planned our 2 trips (in 2009 and 2012)….and now, it’s just going to be one more thing to add onto our list of ‘worry‘ when planning what should be a ‘carefree‘ time for our families.  As a matter of fact, I just might not plan our next ‘special’ vacation (if there ever is one) to be at Disney – with these types of changes, we wouldn’t really get to enjoy much of anything given all the obstacles we will have to face and work around (medically AND with your ‘new way‘).

Disney….are you listening?  Right now, I don’t believe you are…..because, if you were – you’d NEVER have dreamed up this idea.  Aside from those who are in a wheelchair due to a simple injury or just being unable to walk distances without any other medical/sensory issue, I don’t see how this ‘new way’ makes ANY sense.

My suggestion to you is to try to create a small panel of parents who can represent the larger community (Autism, Physical Disabilities, Medical Disabilities…just to name a few) and have them weigh in on your ideas before you roll out something with a ‘let’s see how this works out…..‘ attitude. Have it be tried by a select group of WILLING special needs families and let them tell you what the kinks are before you roll it out across the board.  Don’t make what is supposed to be a special trip turn into a nightmare of jumping through hoops, asking for help with guest assistance and mounting frustration for families who have been longing for a stress free (well, as stress free as it gets), magical vacation with their families.

Not only is your ‘new way‘ almost insulting to our population (because, honestly – it’s become crystal clear that you have NO handle on the impact these changes have on families like ours), BUT the responses from people voicing their disdain for our ‘disabled‘ community regarding the pass is absolutely disgusting….

Disney, I want you to read what people are saying about our children….the ones who battle hard, go through hell, and keep on smiling…..
No offense to special needs kids but do they deserve to ride before everyone else?
My response: Really?  “No Offense”  – are you kidding me?
NO, they don’t ‘deserve‘ to ride a ride before everyone else – but they cannot sit in the sun, their wheelchair doesn’t fit through the line, and we have limited ‘good‘ time at the parks because their bodies are failing….they DO deserve to have fun just like your kids do – it just has to happen differently – for reasons you clearly will never understand.

Is taking your special-needs kid to Disney that important????
My response: Doesn’t EVERY child deserve to have a Magical Time?   Many of these kids may not live to see another birthday, I think they deserve a break from the ‘hell‘ that they go through in order to have a little uninterrupted happiness.  Have a heart.

Some parents just want to take the easy way out.
My response: If you call getting up 2 hours earlier than everyone else to get meds set out, check/recheck/triple check the weather, pack emergency supplies (like rescue medication for my daughter’s seizures, a monitor for heart rates and oxygen saturations, ice packs and many other things), packing the vehicle with wheelchairs and other equipment – and THEN spend another 2 hours getting your kids up and ready to go….and then worry about having to monitor ALL of their medical stuff ALL day long KNOWING that the extra activity is bound to stress their fragile bodies some….KNOWING you have to find the balance of giving them some Magic and pushing their bodies too hard – if you think THAT is the ‘easy way out‘ – well, I think you’ve got another thing coming.
Walk a day in my shoes, pal….walk a day in my shoes.

If they can’t simply wait in line or come back within a designated hour window – the parents might need to rethink where they are spending their vacation.
My response: I’d LOVE for you to understand just how precious an hour is in our day – an hour makes or breaks us. Sometimes we’re only 2 hours into our day and my daughter is completely done – game over – and our day is done, we have to head back home and we have to regroup.  That doesn’t mean that we aren’t going to try to give her happiness and joy.  Our children are just like yours – they have the same right to experience joy, happiness, and magic just like your kids do….the difference between your family and mine clearly is that we APPRECIATE the ability to be able to take a vacation. We APPRECIATE the opportunity to make memories and give our kids a break from the not so awesome things in life.   We plan these vacations with the hope that we can actually MAKE IT to the vacation we’ve been planning THIS YEAR and the thought of ‘next time‘ isn’t even in our horizon….because, to us….there may not be a next year.
SO…we thought LONG AND HARD about where we wanted to spend the VERY LITTLE money we had and chose to spend it at Disney World giving our children some much deserved JOY. What they go through in their short and precious lives is more than ANY human being should ever endure….I think it’s YOU who needs to ‘re-think‘ things.

It’s so upsetting to hear people say such callous and thoughtless things.  I hope and pray that they NEVER have to understand the challenges we face – but my heart aches for them to – just for one moment – realize that the journey we are on is not one of entitlement or choice. It is one we travel because we have to, because we love our children…because we would do anything for our children (including giving them a few days where SOMETHING in their life was ‘easier‘ or more joyful and magical than it normally is).
I would never compare or judge the lives of others and it’s sad that so many feel they have the right to do so to others.

TO ALL THOSE WHO AGREE WITH SOME OF THE STATEMENTS IN RED ABOVE: 
Shame on you.  May you never feel the heartache we feel when we watch our loved ones have bad days, seizures, breakdowns, serious infections, hospitalizations – may you never have countless sleepless nights as you watch your child’s chest rise and fall – and you pray for another day to just BE with them.  May you not ever have to watch your child deteriorate, go through painful testing…and other things that you can’t FIX or CONTROLCount your blessings and be grateful for the fact that you can take your kids on a trip and not have to worry about the noise, the temperature, the stress, the crowds, the waits, the meltdowns, the medical equipment, the monitoring, the paperwork to get on a plane, the paperwork to carry in the event of an emergency, the wheelchairs, transporting medications on airplanes and in the heat, infusions, treatments, illness, metabolic crashes, medical crisis (the list goes on and on)…..be GRATEFUL instead of critical and judgmental.

THE TRUTH: I would trade my life in a HEARTBEAT for my kids to be normal for even just ONE DAY so they could go into Disney World and wait in lines.  Instead, their Mitochondrial Disease, Primary Immunodeficiency Disease, Seizures, Autonomic Dysfunction, sensory issues, and anxiety comes with us to Disney- and our days entail bringing our bag of regular and rescue medications, pulse oximeters, oxygen, blood pressure cuffs, ice packs, blood sugar testers, wheelchairs, and so on…..I’d stand in line FOREVER for a chance having 2 healthy kids (even if it’s only for ONE day, it’d be worth it)….but instead, THIS is what we live:

ENTITLED?? I think not.

Disney, I hope you’re hearing me loud and clear….my followers on this blog, the social media friends I have and so many more have all vowed to boycott you if these changes are indeed what end up being your new system.  Honestly, the proposed changes I’ve read so far are incredibly flawed and they do  NOTHING but punish those who truly need it for the misgivings of the rich and entitled who abused the pass and ruined it for those who respected it, each other, and our community.

And, Disney – if you’re actually reading this – AND, If you want to talk to REAL families who have REAL and PLAUSIBLE solutions – message me HERE, I’ve got plenty of ideas and a diverse group of parents who have children with various challenges who are more than willing to share their stories with you in order to help you help the rest of the disabled community have a special and magical experience at Disney when they visit.  If you’re going to make changes, you may as well do it right the first time and make the changes work for ALL.

To my readers – if you want to stand up and take action – go HERE and SHARE THIS BLOG!

Love and Light – and maybe even a little big of Magic
Stefani
http://www.hoperisingmusic.com

Find me on Facebook HERE

Comments on: "Dear Disney…" (121)

  1. Lynda Dunlap-Edwards said:

    Good luck with the petition, which I just had the pleasure of signing. My son has food allergies, it scares the hell out of me just to send him to school, I cannot even being to fathom what you and your family goes thru on a daily basis. I whole heartily support you! You are your children’s voices, I’m so glad to see you fight the good fight for them! Sending positive thoughts (and hugs) – Now, go get them! 🙂

  2. I’m so glad you were able to take your children and enjoy a magical time. I am sorry that Disney is planning changes that would cause you to boycott. I think that they need to evaluate the process in terms of those abusers getting passes but those who truly need them and can justify it should be allowed to utilize them properly. Which you did. Unfortunately, there are entirely too many people that take advantage of benefits they don’t truly deserve. Good luck to you and your family.

  3. Thank you Stefani… a friend just shared your blog and someone she knows just wrote this –

    Disabled kids so deserve to have the same in that non-disabled kids do at parks. I just get frustrated that non-disabled kids don’t get to have the same kind of fun that disabled kids do. My kids will never (unless I pay out the nose) be able to sit next I a princess without having to wait all day in line which hey can’t handle because they are kids. I have no problem with special privileges and accommodation for disabled families, I just wish they would make it easier for EVERYONE to be able to have a magical time.

    I asked her what was it that frustrated her that her non disabled kids didn’t get to have fun in doing that our SN kids do get to do… the endless hospital stays endless weeks of their lives, their IVIG infusions every other week, the feeding tube in her belly to feed her, the 100’s of surgeries, the port line that runs along her heart… her CVID, her seizures, etc, etc…

    I just don’t know if the non SN’s world will EVER understand it….

    Susan

    • Sadly, I think you’re right for the bulk of them. The best we can do is try to be transparent about our journey and hope to educate them regarding their misconceptions.
      HUGS.

    • Honestly, many will never get it. What she needs to understand is that the only ones who get the special character interaction is Make-a-Wish kids. It has always been this way. The GAC that we have used in past never included character interactions, and often, our family would have to split up with one parent waiting in line, while the other parent took the kids to do something else. Of course, then, we can’t win for losing, and the people in line near me would get upset that the rest of the family “cut line” to come join me when it was close to time to see the character. And even for rides, the GAC was only a “front of the line” pass for Make-a-Wish. I find that many of the people I see who are critical of those with special needs complaining about the changes don’t really understand how the system worked to start with.

      • Exactly! Even though we can avoid wait times – we still waited some,and we NEVER have gotten to skip a line for characters.
        Thank you for making this statement!
        Blessings,
        Stefani

  4. Very well said! It is so sad to read the hateful ignorant remarks out right now on social media. I’ve gotten some rather nasty comments myself, and it is so discouraging. So many people just don’t get it and likely won’t. There is no one-size-fits-all approach to special needs, and I wish that people and companies would get that. This is not about entitlement. This is about our kids being able to have a good time in spite of their challenges. I’ve been to Disney both under normal circumstances, waiting in a normal line, and needing a GAC. I long for the days of standing in line with everyone else. If only people would understand this. Did we ask for the challenges that require us to use assistance? No, I don’t think so. However, I would never trade my kids (or their problems) for anything, and I want them to be able to enjoy Disney.

  5. So true! Thanks for writing this on behalf of so many families who struggle with the reality of serious chronic illnesses.

  6. Stephanie "Seth's Mom" said:

    I completely agree. We just went to Disney about 2 weeks ago and they had not made any changes then. I have 4 children and my 3 year old has multiple medical issues. He had an amazing time and was treated like “Royalty” for sure. So I really hope that they don’t change anything cause we would love to do it again, but if it had been any different I don’t know if medically, financially, and emotionally; it would have been worth it. Plus Disney needs to realize they will loose all of their “Make a Wish” kids if anything was to change. Like you said their are so many worries in our everyday lives, and these kids are already so fragile.

    • I am glad you had a great time, Stephanie, as you should have!!!!!
      They did say that MAW will not change – that is a different entity and will stay untouched. I am VERY glad about that, but my issue is that there are so many kids that don’t qualify for MAW that have disabilities and needs that are significant.
      Thank you for stopping in, best wishes to you!
      Stefani

  7. You know what? I’d love the opportunity to have my kid just “not want” to wait. I’d love to not have to try to hold one who can’t stand that long and try not to lose his eloping brother in the process. I’d love a chance to not pack everything but a kitchen sink (they have those at the Baby Centers!) to get through a few hours. Disney was the only place we really felt like we could be “at home” – so much so that we actually made it our “home” and bought into the Disney Vacation Club. I’ve already written them and said if we can’t get our value from it – I’m not talking wring every penny, I mean the few paltry things we can actually manage – then there’s just no point.

  8. You have the most beautiful children. My son has CP and sensory issues and what Disney does here will be the number 1 deciding factor as to whether my family EVER makes the trip or not. The reaction to this change horrifies me, as well. We all live in a world where we like to think of ourselves as equals and as being accepted, but then something like this happens and all of this hatred comes out of the woodwork. It’s so sad and scary.

    • Thank you, Liz for your kind words. My wish is that people stop for a moment and think about what they’re saying. It’s not about ‘getting to the front of the line’ it’s about giving families a chance to experience the magic – even if it’s in a different way. This country needs to learn tolerance, compassion, and acceptance, otherwise, we’ll end up like other countries who do and say horrible things about others because they don’t agree with what they’re doing.
      Thanks for stopping in,
      Blessings,
      Stefani

  9. Thank you for stating so eloquently what I have not been able to say myself. We, too, used the Guest Pass when we went to Disney World a little over a year ago. While our medical situation is not quite as striking as yours, we did have to make difficult decisions.

    What most people saw was us skipping lines, and me standing up from the motorized scooter that I had rented and walk (apparently unaffected) onto the ride. What they didn’t see was that we didn’t get to the parks until late morning/early afternoon and left by 5 or 6 pm every single day. Or my 7 year old lying next to a wall in one of the shops to rest and cool down while I looked for trinkets to coax a smile to his exhausted face, and Daddy followed the 5 year old around. What they didn’t see was me nearly unable to hobble to our room once we reached our resort. Or the desperate rush to administer medications the very moment we returned to our room because otherwise the boys would be asleep before we could give them. These medications could not be skipped if we wanted to stay out of the hospital.

    I don’t disagree that the original Guest Pass system was flawed. It was far too easy to take advantage of! But those of us dealing with significant medical issues typically understand that there will be some people that choose to take advantage of such systems. The simplest solution for Disney would have been to begin requiring medical documentation of the need for a Guest Pass. Those with chronic medical issues are pretty used to have to provide documentation to allow for the weeding out of the fakers. The physicians that I have worked with have always been willing to write letters and print them on hospital or practice letterhead. As was suggested, a panel of Guests with a variety of medical disabilities could have provided guidance to Disney on how to accommodate all Guests.

    • Kendra,
      I completely agree, the system is flawed as it is now. So sad that people want to ‘pretend’ that they are disabled so that they can get an advantage. 😦
      You described our family almost to a T – I use a chair because of Mito and autonomic issues and people’s jaws drop when they see me stand, almost like, “PRAISE GOD, SHE IS HEALED!” or, with disgust because they don’t understand how someone could be in a chair but still walk. I am glad that I can share our experience and generalize it a bit so the message translates across MANY horizons.
      Best of luck to you, be well!
      Stefani

  10. Yes. I totally agree. Disney is really the only place my family can vacation that all 5 of us can have a nice time. I have two healthy typical children and their lives are also impacted by having a brother with chronic illness and special needs. Your post initially caught my eye, when a friend passed it along, because my son was just got a pre-lim diagnosis of hemiplegic migraines but his is “sporadic” not familial since we do not have anyone else in our family with this problem. It is so terrifying because it’s like he’s having a stroke, very weak on one side, followed by all kinds of autonomic dysfunction- pale, bp drops, vomiting, diarrhea, almost passes out. We aren’t even sure if it is HM. Gonna do another 48 hr EEG and see if it isn’t seizures. He is mostly nonverbal so he can’t give me very many clues. Thanks for posting. I wrote a similar letter to disney. I hope they listen. We really won’t be able to go back if this change takes place.

    • Kristine,
      I am sorry that you are going through so much uncertainty – sounds so much like my girl. It is so frustrating when there are so many question marks hanging around. Have they done any autonomic testing? If you ever want to connect, let me know.
      Blessings,
      Stefani

  11. We to have a very unusual family adopted several children with disabilies we were sad to hear that the prices had gone up and without the front line pass we could not do it having 5 with down symdrome who can not stand in the sun because of meds they take.the other young man has Duchennewalk muscular dystrophy can not walk so hears the plane we have to find another way to have fun maybe Legoland sad but true

    • Penny,
      Bless your hearts! I am hopeful that the changes are better than what I’ve been reading – and I pray that you CAN make it to Disney. DMD is the type of situation where this new way just WON’T work. I pray for your family and for the one with DMD. My heart goes out to you all. I wish you the best, stay tuned – if I hear anything, I will post it here!
      Blessings,
      Stefani

  12. AMEN!!! Where do I sign?

    Disney was our dream. To take my son to the place that I have such fond childhood memories of. Now, I’m not too sure… Everything you said, I can relate to. I feel sorry for those people who don’t know how to see and enjoy the real treasures our kids show us everyday. My son is severely multiply disabled with Spastic Quad CP, seizures, CVI, dysphasia….the list goes on. Disney perhaps should re think their slogan about being “the happiest place on earth”

    Thank you for writing your blog.

    • Jax’s Mom,
      I truly hope that enough people speaking out will coax them to reconsider their plan – that they can see that this ‘new way’ might be okay for some, but that they have to have more than one ‘plan’ for those who have needs that won’t fit into their ‘new way’ – my concern is that they don’t roll this ‘new way’ out until they’ve worked out all the kinks – like, what to do with families like ours who can’t ‘come back in an hour’ or wander the park to find a shorter line or watch a parade or two while we wait.
      Thanks for stopping in and reading!
      Stefani

  13. Amen Sister! The lack of compassion I found on comment boards was astounding. “I’m sorry you have to go through all of that, but how is it my problem?” Holy crap. How about the golden rule? “If your kid can’t be polite in line, maybe they shouldn’t be there.” Ever hear of sensory overload buddy? Apparently not. And we wonder why our nation is the way it is today. I did hear on another board that if you have a truly disabled person, you can ask for a VIP Guide (for free) who will take you around the park for a couple of hours-like a live GAC. They are not meant for people with broken legs in wheelchairs but for people like your family and my son who has severe autism, apraxia, cognitive delays, a seizure disorder, sensory integration disorder, and CRMS. I’ll be watching to see what Disney does and if it actually works. My problem with Fast Pass has always been that it’s not available for every ride. Will the new system be for every ride? My son loves the fantasyland rides, but if we happen to be there at peak hours (we do our best not to but since our trips to Disney coincide with visiting family, it’s usually around school holidays), he can’t tolerate standing in those lines either. I’ll be keeping my fingers crossed.

  14. I have been a special needs RN for years And recently adopted a special needs child. I agree 100% with Stefani. Though my adopted child it’s not as severe as what other children are, and to look at him you would not think he is a sick child but a couple hours in the humidity at Disney may very well pt him in the hospital. But should I deny him they trip? NO!! He loves Lightning McQueen and Simba just as much as any typical child!!

    • EXACTLY!!!!
      Amie, I think that it is so important to educate others about ALL disabilities, not just SOME disabilities. I think the more that we share, the more that we open up, the more that we speak up – the better people who don’t ‘live it’ will understand.
      Thank you for taking the time to stop in!
      Blessings,
      Stefani

  15. Charles Dinning said:

    Thank you from a dad of a Make-a-wish Kid.

  16. I was given a trip to Disneyland for my 17th birthday. I just turned 21. I have not been able to go yet because my illness have continued to progress and worsen (autonomic dysfunction, pots, chronic fatigue syndrome, autoimmune disorders, itp, gp, and lots of others. Wheelchair/ j tube). I’ve finally decided I have to go before its too “late”, regardless of my health. It saddens me that Disney would do this. I’m an adult, and I know this trip is going to be extremely difficult, and for little kids, its 100x worse. I tried to vent my frustrations about this issues via Facebook, but you said everything SO perfectly and eloquently. You voiced everything I was trying to portray to those who don’t deal with illness, but I failed to find the words. Thank you for writing this. Can I share this on my blog (I’ll link it to your site and give full credit!) And I’ll be religiously sharing this on social media/pinterest every month! Thank you for being a voice for those of us who suffer with these awful illnesses!!!

    • Whitney,
      Absolutely – share away!!! The point of this is to reach others, educated others, and be the voice of change!
      I am sorry that you’ve had such a tough road – if you go back through my blog, I have Mito also, so I understand what trips like these do to us ‘older folks’ (wink wink) first hand as well.
      I wish you all the best, thanks for taking the time to read and stop in!
      Stefani

  17. Thank you!! Thank you for being the voice for so many of us. My daughter has childhood interstitial lung disease. It’s very very rare and very complex. Your descriptionson what it’s like to be the parent of a complex child felt as though you were talking about me, personally!!
    If only people could really truly open their hearts and feel what we feel daily….

    • Roxanne,
      I wish you the best. I have a friend with interstitial lung disease and the road is not easy by any stretch. Thank you for stopping in and sharing your thoughts. I am glad you were able to relate. While I shared what we go through personally, I tried to generalize things as best as possible so the message was broad enough to really cover ALL who struggle with disabilities.
      Be well,
      Stefani

  18. Well said. Hope you find peace in knowing you’re doing all you can to make your kids happy, God bless you!

  19. momoftwins7 said:

    I have two boys (twins) that have Mito and a host of issues that go with it. We avoided Disney on our vacation to Florida this past summer because of the stress of it all and the contraversy associated with what was going on. It would have been nice to fulfill their wish to go. Instead we opted to take things slow and do other things like swim with manatees and hang out near cool water at a pool. We tried sea world only to spend the day coaxing an overwhelmed set of 9 year olds through show after show and even being asked to move up from two near empty benches because we opted not to bring our one sons push chair in with him! My son nearly tumbled down the flights of steps that I held and guided him down. Things do need to change. I don’t see that happening without a lot of people standing up and some long needed empathy on others part. Until you live this…you don’t have a clue…let me know how I can help in this matter…

    • Thank you for your words and for sharing your experience. I just don’t think that folks realize just how much goes into a ‘day of fun’ for so many families.
      I think the biggest thing is to be vocal, share our experiences as publicly as possible so that we educate the misconceptions out of the picture! It is the very reason I did this blog, to make sure people understood our lives…..and that we weren’t just crying ‘pity me, spoil me’

      Blessings to you…
      Stefani

  20. I have an autistic child. I live in the UK so not sure we will ever get to Disney. Although I have to say with such a system Disney want to put in it would be a no go for us.

    Thank you for writing. Best wishes to you and your family xx

  21. Good luck what a beautiful post. I grew up with a SN sister and while we never went to Disney it sure made me appreciate the GAC for those who truly needed it.

    • Thank you Julie, my hope is that Disney just thinks outside the box a little more than they are. One size does not fit all. Thanks for stopping in!
      Stefani

  22. As a mother of an angel who enjoy our trip because of the pass… I have the same feelings and wish Disney reconsider this decision … 😥

  23. Thank you SO much for this. It’s been on my to-do list but between my son’s chronic anxiety laced meltdowns over school and seizures…I haven’t even been able to find the energy. I’m so happy you found the strength from somewhere to put this out there.

    …danielle

    • Danielle,
      I know I am not the voice for all, but I hope to be the voice for some! Thank you for reading and taking the time to stop in and share your comments!
      Stefani

  24. Debbie KNOBLOCH said:

    We have a daughter with a rare lung disease ends oxygen 24/7. She does poorly heat. We went to disney in 2012 before she turned 3. Great experience. We have another trip planned for 2014…… Not so sure we will get the same experience or not? She also has a service dog to carry her tanks of oxygen so we have him to think about too and her little sister that thankfully is showing no signs of the lung disease so far. Thank you for standing up for all the special needs kids and families. So many people look down on us it’s NoT fair. Thank you and your family will be in our prayers.

    • Thank you Debbie for stopping in, sharing your story and for taking the time to comment.
      I hope you have a good experience in 2014.
      I am glad that the post touched you and I wish you nothing but the best!
      Blessings,
      Stefani

  25. Your posting is tremendous. It was written from the heart, with eloquence, detail, and professionalism. You were able to put into words the thoughts, frustrations, deep love and pain that all of us parents of SN children experience. Thank you SO much. As the mother of a son with autism, epilepsy, clinical depression and ADHD, this letter hits to my soul, You have so much more than your “share” of life challenges but you choose to deal with them with grace and dignity. The additional beauty of your writings is that (I believe) you were able to place the reader in your shoes (to the extent THEY will allow). I pray Disney will rise to the occasion and rethink their policy. Disney has always gone out of their way to make every guest feel special…that has been their charm and draw. It was always “like a dream come true” to live in that world for just a few days. I feel sure Walt Disney would have done the right thing. I hope the current executives can reverse their decision and come back to having a true connection with hopes and dreams.come true. I pledge to support your stand in any and every way possible. Blessings to you, Stephani, and to your family.

    • Thank you Jane for your kind words. I only hope to open the eyes of people who are blind to what we live day in and day out.
      Blessings to you – thank you for stopping in and posting a comment,
      Stefani

  26. Well said. I have two kids with no special needs and a day at Disney could be daunting. Having to contend with the heat, crowds, lines, and sensory overload with kids with special needs … your description really opened my eyes to what that would be like. I truly hope Disney reads your words and takes them to heart. ‘Not fair’ covers a lot in your family’s life; I hope Disney goes back to the old way to help make at least a vacation a little more fair for families like yours.

    • Thank you, Lauri for stopping in and sharing your thoughts. The purpose of this post was not only to reach Disney, but to educate others on the challenges so many of us face. I appreciate your comment!
      Blessings,
      Stefani

  27. I think it was wonderful. But you mentioned the heat… I went this summer with a 1, 3, and 5 year old. The heat was a lot on them as well. We had lines, and strollers, which we could not bring into the lines with us (perhaps not as cumbersome as a stroller, but no fun to carry 3 kids in 100+ degree weather) but we had other ways of coping. Switch passes, fast passes, and good old fashioned, not going on some rides. We also went home in the middle of the day to rest. I appreciate that you were not one of the people abusing it, but you have to remember for what you would consider “normal” families, Disney at any time of the year can pose many challenges to which we never had an option like your family. We had to make do. And let me say I am sure you can appreciate that having 3 kids on a vacation no matter their ages or disabilities can be hard. No matter the age but especially when they are all under the age of six. It was great that they had that option before and you were able to experience it. But there is nothing wrong with utilizing the same methods as other families. Was it great that my husband and I could not go on the same rides at the same times? Sure – but at least you got to go with your family TOGETHER and did not have to break up your party. I think today, people and I am not saying you because it seems like you are a responsible person, some people who have people in their family whether a parent or child or spouse, feel that this makes them entitled to have everything handed to them easier and should get a better benefit in situations like these. I am not talking about handicap parking or special bathroom stalls (although it would be nice if in everyday life the changing tables were not located in the ONLY handicap stall as when the stall is being used by the appropriate parties it can be a bit cumbersome… they should be located elsewhere – a different rant for a different day) but when a theme park does have ways to make the trip easier for ALL people and not not just persons of disabilities and their familes – like Disney for example – as previously mentioned, fast passes and switch passes- is it really something that you should forever boycott Disney because they adjusted their policies to make it a fairer trip for EVERYONE and not just those who would seek to abuse a perfecly nice thing they did? They are not obligated to do more because they DO more already. Its just not something that you have been used to. So instead of hating (not necessarily you) maybe you should consider that there are other options available to you that you never had to think about using before, like the rest of us. And I still had a lovely time. This message is not intended to incite hateful comments to me but merely for people to think about the topic more in depth and realize that NOT ALL HOPE is lost for those families who have person(s) of disability in their group at Disney.

    • Sadly, you are missing the point – if only it were THAT easy….fast passes, switch passes…..
      Respectfully, I do encourage you to really THINK about what you’ve written – this isn’t about us getting an ‘easy pass’ it’s about making it so we can actually experience the park. I am grateful that you have healthy children – I wish that for everyone. I am really happy that you were able to ‘make do’ even though it wasn’t easy during your last trip. For us, it’s not about ‘making do’ or ‘switching passes’ – heat like that can be so detrimental to some of these kids – and so they can only be out for small periods of time. It is impossible to do ANYTHING at all in a small amount of time at Disney, the passes allowed for that – for those who have children with life threatening medical conditions to be able to do the things you all take for granted.
      I do appreciate you sharing your experience and I pray you never have to go through what we do….not for even one blink of an eye.
      Be well,
      Stefani

    • Please, let me give you some examples and then as “showyourhope” said, please consider it as you seem like a very reasonable compassionate person.

      *I am sure that any family would be more then willing to split up but they have to stay together b/c it takes 2 adults to transfer their child or LO from the wheelchair to the ride.

      *Some families get to run into the food place and grab a chicken finger instead of getting feeding tube equipment out, flushing and feeding and flushing again…4 to 6 times a day.

      *How many times a day to check your child was still getting enough oxgyen, and making sure you went the long way around the smoking sections b/c of the 02?

      *I am guessing even though you had 2 in diapers, they were small enough to still fit on the changing table? With no changing tables big enough, some have to use the bathroom floor, or go all the way back to the hotel if an untimely accident happens.

      These are just a very few of the time-consuming things regular familes did not have to spend their precious time at Disney on. I consider it pretty even with the amount of time “regular” families spend waiting in line, we don’t get “extra” rides or anything “handed to us easier”, it gives us an even playing field.

    • Wow. Are you a Christian? Wow.

      • I agree that they need an advisory panel – of adults and parents with children that have various disabilities. Things DO need to change, but this ‘new way’ is not the way. Thank you for sharing your story!
        Blessings
        Stefani

  28. Jeni @ Patron Saint {of Poopy Diapers} said:

    I hope this goes viral!! I tweeted it 🙂 We have used the pass in the past and it has been wonderful for our heart kid. Especially before her last heart surgery (she had subaortic stenosis repaired and will need a new valve in the near-ish future). She has to pace herself and her energy (and when she was younger we had all sorts of fun bolus feedings and immune / calcium issues to account for).

    I hope Disney listens. I hope they realize this was a huge mistake.

    I applaud you for addressing the horrible comments that I know I’ve seen in comboxes lately. I couldn’t even read through most of them bc it makes me so angry I get sick to my stomach. Not even for my own kid but for all the others who truly have a hard time “putting around” and taxed energy levels. I don’t know what Disney was thinking. I really don’t. Someone should be fired.

    • Jeni,
      Thank you for sharing! I want this to go viral – I WANT people to learn, to SEE, to KNOW that…while we don’t expect ‘entitlement’ – we’d really like some understanding.
      Thank you for stopping in, for sharing your story and for taking the time to comment (and share)!
      Blessings,
      Stefani

  29. Jeni @ Patron Saint {of Poopy Diapers} said:

    Also–your pictures are SO adorable and wonderful and some so sad ❤ Hang in there mama. ((hugs))

  30. Stefani, i could not of said this better, SPECAIL NEEDS CHILDREN ARE VERY MEDICIAL FRAGILE AND THAY DERSERVE TO BE TREATED LIKE EVERYBODY ELSE SHAME ON DISNEY FOR DOING THIS, IF I WHERE IN CHARGE I WOULD LET YOUR FAMILY GO FIRST (THAT GOES FOR ALL SPECAIL NEEDS FAMILY’S) AND HAVE ALL THE OTHER PEOPLE WAIT I LOVE SPECIAL NEEDS KIDS! TOGETHER WE ALL MAKE THIS HAPPEN! I WILL SHARE ON FACEBOOK TWITTER ETC! YOU ARE A GREAT PERSON STEFANI I PROUD OF YOU!

  31. I’ M PROUD OF YOU!

  32. Kim of chicagoland said:

    I really enjoyed reading your letter to Disney–I am very grateful that I don’t have to go through what you do on a daily basis–i have no issue with the way Disney did things in the past for family’s like you–I do see they want to cut down of the free loaders–but really how many are there?? did it interfere with us able bodied people having a great time–I bet not–did it interfere with family’s much like yours–that’s the answer I want to know–if it did–then I see a need for a change–BUT their new plan??? one size fits all plan?? I am sorry no one fits into a one size fits all–that’s a dream! I personally would like to see many plans offered–I would also like to see financial assistance(or a scholarship if you will) for family’s who need it–I would make a donation to it for sure!!

    some of those nay sayers would say your asking for “entitlements”–my response is “no, what I am asking for are OPTIONS be available to all family’s who need them– not one size fits all”–but they have to prove a need as each need has different options– will corruption happen with proving a need?? sure–it always will–but the percentages are low–I think Disney can afford the loss!

    I went back to read a few comments–yes my kids are healthy(praise god) and yes the get cranky in hot weather and standing inline–guess what? that’s part of the experience for us! not every privilege we have(my family) is 100% positive–if I can we end the day with 80%, I would consider it winning the lottery–so to the lady who had 3 kids under 6–boo hoo–suck it up and thank god for the money to afford to go to Disney(we don’t have the money!) and that you have healthy kids–poor things had to wait in line in the heat–you had to hold the kids in 100 degree weather–maybe THATS your cross to bear–maybe god was trying to work on you and you cant even see that. I know she too wants compassion and guess what, even though I don’t agree with her points–I would still offer to help her hold one of her kids or entertain them while in line if she were next to me. see I know raising kids DOES take a village!!!

    I think what your asking for is compassion–not for you or even your kids–compassion for people! we are all unique and valuable to this world!

    • Thank you for your comment, for reading the post and for your genuine suggestions and thoughts. It is greatly appreciated. I do know something needs to be done – WHAT that ‘something’ is is entirely up to Disney, the ball is in their court. I SO want to believe that they will eventually get it right – but I am sad that the trial and error will happen on the backs of families who already have enough to deal with.
      Thank you again, blessings
      Stefani

    • trevorsmommy said:

      Good grief…I want to HUG you! 😉

      …danielle

  33. I love this! Are you sending a copy to Disney??? I had thought about writing a letter also- I hope lots of people do. We need to flood them with letters about what an absurd decision they made. I am the mom of a child born with a congenital heart defect and we also appreciated the GAC last time we were there. I was devastated when I heard they were taking it away because my son will never last in lines and heat for long enough to enjoy the magic. Your letter was beautiful. I hope it gets into the right hands!!

  34. Beautifully written! I am thankful every day that my three children are medically healthy. We do deal with various degrees of autism that we have all learned to deal with and adjust our lives for, but our lives are pretty simple compared to many peoples. I am so impressed with all that you do and accomplish every day. The people who take advantage of these programs and don’t need them should be ashamed of themselves. Disney should also be ashamed of itself for implementing such a short sighted and under informed program. Keep up the good work and bless you for all that you do!

    • Thanks Terri,
      Our journey is not nearly as complicated as some folks I know – and the point of my post was this….one size does not fit all – I wanted to be the voice for those who this pass won’t work for. Thank you for stopping in and sharing your thoughts!!!!
      Take Care,
      Stefani

  35. Stefani, as usual very well written and I agree that this is not the way to assist the handicapped. This is like throwing the baby out with the bath water. Let’s hope that the outcry will help them to remedy this not well thought out “solution”.

    • Thanks Tom,
      I appreciate you stopping in and taking the time to read and comment. It’s sad that this is what it has come to – but hopefully enough people will be willing to stand up and share their stories and help others see the challenges we face!
      Blessings,
      Stefani

  36. Ashley Bivona said:

    You are an inspiration to me! I too have a special needs daughter. She has Down syndrome and seizures. She didn’t start walking until she was 4 and a half. She also has severe ankle pronation so walking long distances or standing for long periods is difficult. She is now 6 and weighs over 40 pounds, so carrying her is not an option.

    It is a shame that good people who just want to have special memories with their children have to suffer because of selfish people.

    Thank you for writing this!

    • Ashley,
      I completely understand the ‘carry’ aspect – my daughter and son are both over 50 pounds and it is far too much for me to carry. I appreciate you sharing your story and for taking the time to stop in and comment.
      Blessings,
      Stefani

  37. Dear Emily, If you don’t have a disabled child you have no Idea what it’s like to stand in line and wait! My daughter is autistic, bi-polar OCD ADHD, and ODD. not to mention all her meds made her really over weight. Just imagine your the person in front of us in line waiting for 20 minutes, and she has a melt down on you. she’s flapping her arms rocking back and forth and screaming profanities at you because she just cant understand why the line is not moving, She doesn’t care or no how to not touch you. All I can do is apologize, but your tired sweaty and don’t want to hear it. You just want me to control my child who is frustrated because she can’t mentally cope with just standing still for any long period of time. not to mention her knees hurt, her back hurts and your gonna pay for it because your in front, in back or on the side of us. Now think about her poor children physically disabled in wheel chairs, having no energy to make it through the parks. They would like to enjoy the day in the Magic Kingdom just like anyone else. The special guest pass makes that possible, if they take that away these children lose!!!! Please rethink your comment it really was uncalled for. Bless everyone with a child with any disability, you are all very strong parents
    Amy

    • Amy,
      Thank you for sharing a different perspective of how this change will touch other types of disabilities.
      My hugs go out to you and I pray – for the sake of us all, that this does not happen!
      Blessings,
      Stefani

  38. BRAVO well said!Thank you, thank you. I cannot tell you the distress I have since hearing about this change and knowing that I will not again be able to take my daughter to Disney. Out first time, we spent the night at Disney Hotel while under construction, which caused an BIG fiasco for our family in ways too long to go into. Then spent an hour waiting in a line for the first ride upon arrival, as everyone does only to end up in an unimaginable meltdown with our child, who has autism. We did not know at that time that a pass existed for her to avoid such waiting, After all the money spent to get her there we left right then knowing that in no way could she handle a day of that without terror and agony for her as it went on, The stimulation of a full day would be unbearable for her. A month later one of our ABA therapist told us that she could have used a handicap pass to go on the rides to reduce the wait and overstimulation standing in line and focusing on the wait and people around her can cause. We redid our entire trip soon after, borrowing the money to do so for her to have the “experience” everyone else there that day wanted for there child too, and it worked! We had a much better half day and were DELIGHTED for her. So much so that we vowed to give her this gift annually no matter what we had to give up to get it for her! An outing like this when you have a special needs child is so much MORE special in ways that parents of typical children will never imagine. Thankfully so. We too were VERY grateful for the experience and did not abuse or misuse the pass. I am disappointed that their decision will be so painful for my child and so many others when they are now told “no, we just can’t go to Disney,” for no better reason than they just aren’t willing to help make it work for people with disabilities. I imagine that NONE of the people who made this decision have any special needs family members. I just can’t believe that they do! I’d even be perfectly happy to provide proof of diagnosis which I brought expecting to provide. There has to be another way to provide happiness to ALL children. Isn’t that WHY Disney created it in the first place. Not just for the typical healthy children but for ALL of them?

    • Well said, HHH.
      Sometimes I think people are well meaning, it’s just that – due to not having to live it every day, they just don’t understand.
      Blessings to you,
      Stefani

    • Melissa,
      I am sorry that you had to go through that, but I am SO glad you learned of the pass and were able to go back and give her that positive experience. I am hopeful that Disney hears us all and that Disney changes their minds and decides to wait to roll out their plan – and that they tweak it and make it work for ALL, not just for SOME.
      Thank you for sharing your story, blessings to you
      Stefani

  39. We’ve been to Disney 3 times with our autistic son. It was truly magical. We only went on each ride of his choice once. Everyone was so nice to him! We wore our pass and once employees awww had a child, they would smile and say enter here! And off we’d go. It only took a second away from the next person in line. It wasn’t even noticeable. I wanted to cry everytime with gratitude. I would often see older grandparents in wheelchairs in some if the special needs lines. And then to watch them get up and go on the ride all by themselves was heart wrenching. I knew they were taking advantage! As for the guest services, they SHOULD check the dr letters! We have never had them check either. My suggestions that Disney truly check those letters and perhaps just have CHILDREN only use these passes. Is free with this mom. We are not given much in the areas of fun for our kids, but this felt like a gift from heaven and my son felt special for the right reasons. So did I! We will not be able to go back now as the trip will be a nightmare now. There’s no way my son would last in a long line and only getting in a ride or two would be no fun at all! As for those parents who say” too bad”. I say – wanna trade problems with me?? I’d also give my life to have my son considered normal! So-Disney- I also volunteer to be on a advisory panel!!!
    Have a “Magical Day!”

    • I agree with MOST of what you have written. However, I have to stop you when you suggest that these “grandparents” were abusing the system. Some need the wheelchairs for long waits, but can walk the short distance to the ride. Also, I have to disagree with your suggestion that the passes only be available for children. I am a 36 yr old woman with stage 4 metastatic cancer, which carries anterminal diagnoses. It has invaded my spine and spinal cord, also my hips and joints. I cannot be in the sun for long periods due to medication, and at times cannot walk at all, where most days I can walk short distances but could not walk the park or stand in long lines. I also cant fit my chair in the regular lines. Now if these passes are only for children, what about my kids? Do my sons not deserve to go on a memory making trip to Disney with mom before she passes due to MY disease? THey have already been forced to give up so many things because of this… I deal with telling my kids no all too often due to having a terminal illness that causes disabilities. Should I have to deal with this on my conscious as well? Please think before you speak.

      • Kisha
        I DID think before I spoke. I too face a progressive (and often terminal) disease process that has rendered me unable to ambulate for long periods of time and it has attacked my body organ system by organ system. I am not sure where in my post you saw that I said grandparents are abusing the system – but I referenced the fact that perfectly healthy individuals were hiring disabled individuals in order to gain an advantage in the park.
        I also never stated that adults should not be able to have access to the pass.
        I have lived the same heartache with having to answer ‘no’ to my children because of my failing health, so I understand that all too well.
        Never did I say the above things that you stated I have said. I did think before I posted.
        I wish you healing and comfort on your journey,
        Steafni

  40. I think disney had to change the currrent program because it simply wasn’t working.
    I have a 10 year old son on a vent, o2, tube fead and wheelchair bound. I am all for the changes and restrictions . At the end of the day disney is still the most accommodating place for my child to go on vacation.

    • I agree that things need to change, but this proposed change really isn’t very different from the fast pass – which will not work for SO many. I think there was abuse of the system from others – YES – but I also think that this new system just doesn’t cut it.
      I’ve been to other places that were similar to Disney – but, with the new changes at Disney, Disney will actually be LESS accommodating – which is sad because my kids love it – but it seems it will likely not be a place we can go to again if the ‘new’ changes hold.
      Thank you for stopping in and sharing your thoughts and experience,
      Blessings to you and yours,
      Stefani

      • Until we try the new system I wont truly know the impact it will have on our family. We are going to disney in December and will report back our thoughts.

  41. Frankly, I’m not sure how abused the other system was. Yes, there are some dishonest people in the world, but I would like to think that the majority of people are honest and would not take advantage of the current GAC. We just finished up a 6 day trip to the Disney World parks with my son with autism and anxiety disorder, and really everyone I saw using the card seemed to need it. It is so unfortunate that a few dishonest people are making the lives of those that already have it tough, even tougher. We take yearly trips to Disney MAINLY because they have always been so accommodating, but unfortunately I think that tradition will be no more. We just won’t be able to do it with the new system. Did they not think about the fact that you take a kid up to a ride and then tell them not to come back for an hour or so might induce meltdowns? Especially for a kid on the spectrum. I understand that they worked with Autism Speaks on developing it, but I just really can’t believe that from the description of it…. It’s really too bad. Signed the petition and I’ll certainly be writing my own letter as well.

    • Agreed. I am sure it happened, but when we were there both times – I didn’t see it abused by anyone. I hear they worked on it with AS also….my question is – who else did they consult – because it clearly isn’t anyone who knows anything about kids with disabilities.
      Thank you for stopping in and sharing your thoughts,
      Blessings
      Stefani

  42. My daughter also has mito. We went to Disney for her Make-A-Wish trip. While I was reading, I could so relate to what you said about the heat, the stress, the meltdowns, and the zapping of energy. Thank you so much for articulating what our experiences truly entail. Well done! I hope this gets the attention it deserves.

    • Thank you Judy for stopping in. I am sorry that you are also on this journey, but I am glad that she was able to go on a Wish trip. I hope it was a wonderful experience for her.
      Blessings to you and yours,
      Stefani

  43. I totally agree that those with special needs deserve a day at Disney Parks. I agree that those with special needs deserve modified access to the attractions, rides, parades and shows. Those modifications MUST include front of the line access for those that can not cope with lines (ADHD/Autism Spectrum, etc. . .) or those who are medically fragile. Your post is well written and thought out! I am glad you take your precious children to the parks! Good for you!! Keep going and keep enjoying!!!

    I totally agree that the reported rumored changes do not look good for those who need it like your children and many other adults and children with problems staying in long lines. I am concerned about the changes and watching the situation closely.

    Now that you know I agree I’m going to say I disagree.

    I think you are moving too fast in calling for a boycott and trying to get Disney to stay with the current system that is allowing too much in the way of abuse. Yes, it is the few that are ruining it for those that truly have a need. Shame on those abusing it!!! Even more shame on those that make rude, uneducated and callus statements about those with special needs going to the parks that do need and do not abuse the system! They disgust me even more than the abusers!

    I know Disney IS STILL committed to giving access to those with disabilities/limitations. They understand that there are those that are medically fragile and those that would be disruptive if forced into long lines. They understand that these children and adults NEED a day at the parks as much if not even more than those without limitations.

    Being an Annual Passholder at DLR, having family and friends with special needs/disabilities, being a Travel Agent specializing in assisting those with special needs plan Disney vacations and a fellow blogger I have been watching what is going on closely. Having had an Annual Pass when they changed from the GAC (Guest Assistance Card) to the current GAP (Guest Assistance Pass) about 10 years ago I learned to hang onto my hat and wait for a reasonable amount of time before getting too upset. This does not mean stay silent! Disney IS going to make some mistakes and some people will be underserved during the transition. We just need to let them know WHEN they make a mistake. I’ve already make my opinion know about the purposed name of the new system.

    I’m calling for patience. Wait!! If you are a special needs adult or a parent of a special needs child read up on the new access system when it is released. Do not just respond to rumors or unverified facts. Keep informed!! Find trusted blog and fan sites that post facts not just rumors. (I don’t think you are spreading rumors. You are stating a concern. I applaud this blog!!) If you go to the parks share your experience from a subjective respective as well as a personal one. But most of all GIVE DISNEY FEED BACK!!! Let them know how the new system works or does not work for YOU!! Disney will respond with changes to the new system IF we the guests that need and use the system let them know how we things work or don’t work for us. They can’t fix what they don’t know is broke! They are attempting to fix a problem right now! The changes were in the works before the abuse came to light.

    I do see some positives from the changes (granted not many). I believe the wheelchair lines for some rides will be shorter because those without mobility issues that can take standing in a normal length Fastpass Line will be sent there. This will balance things out some. Doing that will also give those with ADHD/Autism etc . . . a faster way access instead of standing in an overfilled wheelchair line. It will make it harder for the abusers to abuse the system or want to. I know that sometimes the wheelchair line for some rides is longer than the normal standby line!

    • Thank you so much for taking the time to share your thoughts! I will be boycotting it because, with these changes, a trip there for us would be an incredible waste of time, precious energy, and money. To me, even if they were committed to ‘working’ with families like ours, we have enough hassle just GETTING there, nevermind having to ‘work’ with Disney when we get there trying to figure out what works. I am upset with the fact that it is CLEAR that they did not take into account MANY situations and I would not recommend any family with special needs go to Disney until they work it out – unless you’re prepared for MORE hassle and potential headaches. That’s just me….and I DO believe that Disney felt they were going the ‘right thing’ but it is NOT ‘right’ for SO many families. I think that they need a different approach (like the one I suggested in the blog – having a panel of disabled adults and parents of disabled children – and REALLY working on this diligently and thinking it through before they roll it out. THEN and ONLY THEN will I consider giving it a try. Our kids are ‘test subjects’ in so many situation (and when I say ‘our’ I mean the medically complex, not just ‘my’ kids) and we live with trying things that aren’t conventional, trying non conventional treatments and so on and so forth – to just ‘see’ how it works out…to HOPE it works out and helps our kids. We’re used to being flexible with change, we have to be. BUT….when we don’t have to be the ‘test subject’ on things, I choose not to be. So for now, I am choosing not to be a ‘test subject’ for Disney. We’ve done enough of that.
      Thank you again for taking the time, I appreciate and respect your post!
      Stefani

  44. shelly hingsbergen said:

    Thank you Stefani for doing that so many of us special needs parents want to get out there. It’s all about trying to get so many happy memories rushed in a few hours as long as our kids can tolerate. God bless you for writing this beautiful article. if you haven’t read his book yet I’m sure you would enjoy it Henri Landwirth he is the man that made Give Kids The World Village a reality. Now this is a man that understands what it’s all about. Wish they would make a movie about his life

  45. My son William has Autism and also struggles with many sensory issues.. Even while we are at Disney we have to bring are meals back to our room because he is not able to handle eating in the dining areas something most take for granted.. We try to go to Disney during the most economical and least busy times.. Unfortunately this is usually when it is very warm, and with his Autism and medication it is very difficult for him to stand in the long lines in the heat..With out the pass I simply do not know if a trip will be safe for him medically.. In the past we have always provided Disney with a letter of diagnosis from our Dr.~ perhaps this is what should be required from all people.

    • I am so glad that they have accommodated him in past trips. We’re the same way – we take time out of school and don’t go during the ‘rush’ season because of the immune issues – and yes, the climate isn’t the best!
      Unfortunately, ADA says that they can’t ask for that information….sigh. Catch 22.

      Thanks for your comment and for reading!
      Stefani

  46. Mom of Wish Kid said:

    My son was a wish kid and it was a magical experience. With these new rules we simply cannot return to Disney. we can’t afford to spend precious vacation dollars and time to “give it a try” when I am 90 percent sure it won’t work. My son can physically do about 5 hours at a park. Emotionally and cognitively he cannot process coming back later and will melt down. That would be one very expensive experiment. I am happy to bring medical certification. I am sure most special needs parents would. I know there are privacy laws but I am allowed to show my sons medical record to whomever I need to. Maybe prequalify certain disabilities prior to the visit as part of the planning. This is punishing the many because a few behaved badly. I also have found the comments I have read ranging fro uninformed to hateful. That is sad.

    • I agree….I’m not a fan of ‘give it a try’ – I am hopeful that, if enough of us speak up or if Disney can read this blog or someone else’s blog that highlights our issues, maybe they will be willing to hold off until a REAL plan is in place that will work for all.

      Thanks for stopping in! Be well,
      Stef

  47. Okay, first let me say that I agree with you and totally think that people with special needs or people who are disabled (or dis/Abled?) should be able to enter through the exits and all of that stuff. Your kids should definitely get the Disneyland experience!

    That being said, doesn’t the Americans With Disabilities Act render it illegal for companies to ask for proof of disability? Therefore, with abuse of this program happening (by shameful individuals, no doubt)–what is Disneyland supposed to do? Allow the abuse of the program (which will continue to increase and happen more frequently, which will ALSO increase wait times, etc.)? If they are legally not allowed to ask for proof of disability, what is the solution?

    Again, let me state that I agree with you and am on your side– but, my question to you (and everyone, really) is twofold: 1) Does legal red tape exist for Disneyland to create a policy requiring proof of disability (via the ADA of 1990)? 2) If yes, what is your proposed suggestion for Disneyland? What course of action would you like to see them take? (Keep the program despite abuse? Something else?)

    If the answer is no, if it is legal in the state of California (my home state) for Disneyland to require proof of disability, then never mind–with you 100%! Otherwise, I’m at a bit of a loss as to what the next step should be for Disneyland.

    • Thanks for your comment! I agree – it is a bit of a Catch 22 – they can’t ask because, in the past – companies were doing so and discriminating…so this act protects us from that, but it also creates a situation like this one in Disney.
      Truth be told, even if they had to get documentation from a doctor….people that want to abuse the system will do so, they’ll find a way how (sadly). It’s not that hard to forge a doctor’s note…I mean, people from Disney aren’t going to be able to go through and check credentials of every letter they get.
      For every solution, there is a way to pervert it. 😦
      I think what Disney needs to do is create a panel of individuals with a diverse set of disabilities and talk about ways the program needs to be to make it similar to what they had. From there, I think the rest will fall into place.
      Be well!
      Stefani

      • My understanding, and I may be wrong, is that it is illegal to REQUIRE that medical information be shown or shared. However, many places do just that. Including airlines. Also, I know of very few families who would say “no”, if it meant providing documentation, and denying theor children and themselves the experience. Also, couldnt they just require a letter of prrof from a dr, kind of like a prescription for a therapy pet, stating a child or adult needs special accomodations? It wouldnt have to go into specifics, therefore no sharing of information, just a simple note from a physician?

      • You are correct, ADA prohibits places like Disney from asking for proof regarding their illnesses.

  48. I am a single mom with 2 teenage autistic boys. We live in Anaheim, and for the past 2 years, we’d gotten passes for the three of us, because we could use the guest assistance pass – my lower functioning son cannot tolerate more than about 3 rides at a time before the crowds and sounds get to him; the other one has fears and anxieties (took him until the end of the first pass year to go on Pirates because he thought it might be scary, and he was 15 at the time) and as we live close, it was a win/win. Last time Disney chose to raise rates on annual passes (astronomically) we got a pass for my lower functioning son and got a companion pass (yes, you have to pay for those, and the parking too) so that his helpers could take him while I was busy with taking my other autistic son to therapy or wherever. Just trying to hunt down a companion pass which many Disney employees know nothing about was next to impossible, but we did it, missed out on most of the summer because of blockouts, and now that they’re changing the system, our passes will be useless, after only having used them a few times. My son has no concept of time, and the first time we visited Radiator Springs and they gave us a fastpass to come back in a half hour because it was a new ride, he literally stood there and screamed, hit his head, and bit his hand for the half hour until we could go in. My boys are twins, and his brother also got agitated and upset because his brother was agitated and upset – we’ve never been back to that ride. He did not understand why they changed the system he was used to for the last 2 years, and it sounds like the new system is just another version of that. I would trade my guest assistance pass in a heartbeat to have a typical child who had a concept of time and could wait in a line, not go into screaming fits over crying babies in narrow areas (auditory sensory overload) – I would give anything if they could even verbalize “Mom, I can’t wait in this line anymore – I’m going crazy with too much input!” Thank goodness my kids are ambulatory – I really feel for anyone with a physical disability with this new system – they have to keep going back to a central kiosk to get their fastpasses, so Disney is making them work even harder to get to where they need to go, again and again – that’s like criss-crossing from Adventureland, to the kiosk, then back to New Orleans Square, then back to the kiosk, then to Tomorrowland, then back to the kiosk, etc. I agree about the heartless comments of people with typical children – it may be difficult to take a 1,3, and 5 year old to Disney, but at least those parents know their kids will grow up, go to school, move out, probably get married, and live a normal life. I will probably take care of my boys for the rest of their lives, and have to make special wills and trusts with money we don’t have just to make sure someone will continue to care for them after I am gone. So to the people who are inconvenienced with taking their typical kids to Disney, I will gladly trade you for a day, and then I’d like to see what your new insight is. We have at least a half a year left on our passes, and if they don’t try to make some accommodation (He’s got a companion pass, for gods sake – he can’t go alone!), we will ask for a refund for at least half the passes as well as the parking, and if they won’t do it, the boys grandparents mentioned getting a lawyer to sue for it.

  49. Thank you for writing this. We have a 3 year old with spina bifida, hydrocephalus, and all the many issues that accompany them. We have been reluctant to attempt Disney even before the proposed changes, if those changes take effect it sounds like it really would be a huge challenge.

  50. http://www.bertsbigadventure.org/
    This is a charity in Atlanta that takes kids like yours to Disney. I don’t know if you are in their range but they very likely have a major opinion on this subject. You might contact them and at least see if they have more direct contact with poeple at Disney that could do something about the issue.

  51. Jennifer Korfanty said:

    The “me first” attitude currently prevalent in our society makes me sick. If you do not know first hand the difficulties another family faces then do not judge. I do not have special needs children but I know it can not be easy for those families that do, I can see how taking one stressor off their plate can make their child’s day for the better. One of my children has A.D.D. which sometimes makes simple situations aggravating but never dire. My kids can walk and my kids can wait (albeit annoyingly at times) so for all the families with children who do not have those luxuries, feel free to go in front of us any day. Not only will I not mind but my kids are being raised right and they will be the first to suggest it and have in several situations. I hope your story is heard and changes are made to the new policies.

  52. We should definitely collaborate. I wrote a similar post.

    http://www.mommacandy.com/2013/09/ending-disneys-guest-assistance-card.html

    I am heartbroken over this. But what is Disney supposed to do? I witnessed rampant abuse of the pass at Disney.

  53. Carlos Estevez said:

    Stefani,
    I was floored emotionally by the sacrifices, compassion and never ending love for your children. I can not even compare or yet fathom what you go through daily. God Bless You and your family! Our son (Carmelo) was diagnosed with autism. Carmelo is now 5 years old, he will be 6 in January. We have been going to Disneyland since he has been in Mamas tummy (2008). We have booked our trip for this December to Disneyland in advance now for the last 3 years. But all good things due come to an end, unfortunately. Thinking now, my wife and I may have to cancel Disneyland trip talking about he changes they have implemented. I’ll pray for you and your family. Much love.
    P.S. I will especially pray for Disneyland because they need it most. I would think if Walt Disney were to see or hear of these changes, he would not allow it. Love all those unplanned changes in our families lives. Just another obstacle.

  54. Lisa Kaylie said:

    Thank you for writing this. You are speaking not just for your own family – but also for so many others. I will share and tweet and Facebook.

  55. Can I just say… I am a 32 year old mommy of a beautiful 5 year old girl. About 3 years ago I was diagnosed with a severe case of Rheumatoid Arthritis, and I have completely lost my ability to walk and do simple tasks like eating on my own. It is so so difficult for me to live this way, but I can not imagine how hard it would be for a child to have to deal with so much more than I will ever experience. I also think you Mommies and Daddies of these beautiful special needs children are seriously HEROS. I thank my lucky stars that it is me that is disabled… I don’t know what I would do to have to see my child go through all the things associated with a disease or disability. I am praying for all the children that are being effected by an ignorant world that refuses to give these children the help and consideration they deserve. You’d think a company like Disney that was primarily created for children… Would be so harsh in their dealings with our youth. What is this world coming to? Keep fighting! We will back you up! Good Luck!

  56. Can I just add that healthy people don’t understand that one person’s annoyance (like standing and waiting in a line for 2 hours) is another person’s blessing. I would give anything to be normal. I would give ANYTHING to be able to do that and ride a ride like anyone else. Going to the front of a line SUCKS! You get to pass a looooong line of people staring at you and judging you and giving you dirty looks only to get to the front and have to get on the ride with the help of 3 people while being stared at by yet another huge crowd of judgmental people. Then you get to do the whole thing when it’s over! It is NOT a privilege! Seriously!

  57. Sharon Minassian said:

    I appreciate the time you spent to organize this and writing the Blog!! My daughter has a physical disability and we always enjoyed Disney vacations. We went at least 10 times. It was always a pleasure how Disney assisted with her limitations. Every day she has to maneuver a limiting environment and difficulty getting to places. The world is not always accessible even though there are laws. Everyday she deals with difficulties that others do not have to deal with. Some days are harder than others but this is our life and I adore my daughter. She is an amazing young lady who just started her college life at university of Notre Dame. At Disney she did not feel limited…. it was not stressful and extremely assessable.It was one of the few places in the world that she felt (feels) free and limitless!!! That is what Disney is all about.

  58. Dena Henning said:

    I agree completely. I have as physically disabled adult sister with degenerative hip disease. She is trapped in her body, and it often does behaviors she can’t control. She is medicated and in a wheelchair. I have not renewed my pass to Disney. I am disgusted. There are real an obvious ways to solve the problem! Take care of you and your family!!!

  59. While you endure so much more heartache than my family ever will. I do have 2 children, one with moderate Autism, and the other with Aspergers. I feel for you, and every other family living with special needs.

    What Disney has done with the GAC has set us back a decade. We have to fight all over again.

    I appreciate your words, and your willingness to reach out and make a difference.

    I wish you and your family the best, may there be more good days than bad!

  60. This is my first time reading your blog. I am the mom of two beautiful healthy boys and appreciate how lucky I am for that. Your story is heartbreaking to hear. And it really upsets me that people are so mean, judgemental and unsympathetic. I often hear mom’s complain at school that they cannot pack a pb&j for their kid because of the kids who have peanut allergies. My response to them is that I would much rather have to deal with not sending pb&j to school than having to worry that my child could die from contact with peanuts. I know I am lucky. Know we are not all looking in disgust. You sound like an amazing mother and a true hero. I will be boycotting anything Disney and hope they make the right changes to their policy.

  61. todd smith said:

    Stefani,

    I just wanted to say I agree with every word you said 100 percent! We have a multiple disability household as well, my wife has multiple sclerosis, endomitriosis and we’re hoping not but it looks like maybe cervical cancer. I have had 7 back surgeries, my daughter who is now 12 years old had a major brain injury when she was 2 years old and she also has a major heart defect which is going to cause her to have to have an open heart surgery more than likely before she’s 30 years old. My son has now been diagnosed with multiple sclerosis but he is still getting around okay… my wife on the other hand has her own personal electric scooter because she cannot walk the park. She also has serious bladder issues and if she’s in a long line and has to go to the bathroom she is just going to have to go right where she sits!! So, if there are 100 people in front of her and 100 people behind her in a line, she is just screwed to put it bluntly. This is totally humiliating for her and it’s her worst nightmare. If she does have an accident it is a hazmat issue and they have to close down the line, clear everyone out and clean up the mess. It takes every bit of strength I have to take care of her while we’re at the park (thank God for my son!) and make sure she gets what she needs and is not trampled by people who don’t seem to see people in wheelchairs! I can’t stay on my feet for hours at a time so very much like you and your family we’re only in the park for 2 or 3 hours at a time. There is just no way this newly implemented plan can work for your family or ours or many other families. This is not our fault and it’s not your fault, it’s just a fact of life and I would like to think that some of these people that are making the comments that you listed in red are really, deep down, better people than that….that they can’t honestly believe that families like ours are happy about the fact that we get to get on the ride a little quicker than they do! And much of the time we wait in a longer line than the people that are in the normal line! We have waited for over an hour in the handicap line at Space Mountain while we could have already been on the ride if we were able to walk through the normal line!

    I am going to repeat something you have already said Stefani….I would trade my right leg if my wife could have a normal day in the park and could stand in those lines…I would give anything for that!!! I would also like to be able to do more to help her! It makes me feel like much less of a man because with my back I can’t do the things that I would love to be able to do for her to help her. But that is just not possible so we do the best we can… I’m sure you know the feeling!

    I have been going to Disneyland since I was 5 years old and I am currently 50 years old. Up until the last 6 or 7 years my whole family stood in those long lines just like everyone else. So for at least 40 years as a child, as a young adult and as an adult I’ve stood in all of those lines and I can tell you this, I would much rather be standing in those lines today because that means I would have a healthy wife and children and maybe even myself.

    We don’t stop just at the parks. Our holidays are everything Disney!! We have a 12 foot tall Christmas tree and we had to buy another nine foot tall Christmas tree just so we could give the many, many ornaments that we purchased from Disney over the years, some of them costing hundreds of dollars, a home! We have over 300 ornaments from disney on our trees, not to mention all of the plush and statues and artwork that we purchased from disney over the years for all of the holidays. Our childrens Halloween costumes have always been Disney characters. My wife and I even went to Disneyland for our honeymoon!!! And we try and go back every year for our anniversary.

    I could go on and on but the bottom line is we have never abused the system and like you Stefani, we’ve always been grateful for that system. without that original system we would probably be able to ride two or three rides a day….period! I would be happy to trade the way we have to go to the park for the way the naysayers have to go to the park anytime they want to trade because one day in your shoes or our shoes, would basically stop them from complaining about the fact that we get to get on SOME of the rides a little quicker!!!!

    Thanks Stefani for trying to do what you’re trying to do…we all appreciate it and hopefully if we all band together, disney will see that there are a lot of good families out there who do not want to abuse the system, they just want to give their families a nice vacation free from the daily hardships that are a constant in our daily lives! Stefani, from our family to yours, may God bless you and your children!!!♥♡♥♡♥♡ GOD bless, Todd, Kim, Brandon and Jordyn

  62. Brandon Dietrick said:

    Dear Disabled America, and those who provide them with support,
    When waking up to, what I thought was, a wonderful Saturday morning; a serious matter was brought to my attention. My wife came down the stairs and told me about an email she had received. The email was in reference to a new policy that would impact accessibility to rides for those with developmental disabilities. Walt Disney World would begin implementing this new procedure in the near future (October 9,, 2013 is the tentative date). This was alarming, and rather unwelcomed. I now have to reexamine the relationship that my family would have with Walt Disney World.
    At the beginning of Summer 2013 a story was printed referencing those who “rent” disabled people and bring them to Disney World to cut the lines, claiming this is how the “1% do Disney.” Well as a Christian all I can say about them is that God will deal with them; however, why should Disabled America suffer from the actions of those who feel entitled? This new policy would regulate the ability of those who are disabled in being able to access the rides. Of course, Disney is explaining that it is just like a fast pass; however, I disagree and believe this is appalling. My oldest daughter is 10 years old and has Autism. Giana, my daughter, does not have the high functioning level of Autism. She is significantly afflicted, and this disability causes a disruption to her entire life. She cannot talk, complete the simplest of tasks, communicate, etc….. The only joy she gets in life is from 3 things: one is sitting in her room watching YouTube of Disney rides, two is swimming, and three is Disney World. She would never be able to wait for “Fast Pass,” otherwise we would do that. This is the only thing this child enjoys in her life. So much so, that we have relocated from New York to Florida just for Disney World. We go there on a bi-weekly basis! She has her challenges at times; however, it is really the only joy she gets. I have seen many families with children like mine who I know, from experience, will not be able to wait for specific times etc…… Shame on Disney World!
    When my wife told me I was first confused, then angry, then in disbelief. I cannot believe a company of Disney’s stature would even entertain such a ridiculous idea. They obviously do not have experience dealing or supporting someone with a challenging or life altering disability. If they had they would have realized that this idea is absolutely out of the question. I have been a professional of those with Developmental Disabilities for the last 14 years ranging from: direct support, management, administration, Special Education teacher and most important parent. I can confidently say, after working with a wide range of disabilities, that this is an unfeasible and almost punitive reaction to those with disabilities because Disney cannot police a system that works when utilized correctly.
    There could have been other options such as having a guardian or worker show some sort of identification to prove a relationship to the disabled individual. For example last names, pictures, identification badges for an employer (if they are a service provider). Another idea is to have Disney deal with such matters in advance. Many people know when they are coming to Disney, and can contact them in advance for support. Disney could employ a small division that could be responsible for just this. I find it difficult to believe that with all of the creativity, genius, and dedicated cast members this is the best that they can do. I invite any Disney member, or anyone they can get in the planet, to test this “new” approach with my daughter and see how she does. Let’s see how many melt downs she has when she cannot go on the ride she wants at the time she wants it. The point is there are other alternatives to punishing an entire group of people because of some irresponsible few. Those with Developmental Disabilities cannot control their challenges and are innate qualities. This is simply an unacceptable approach.
    My conclusion is I am calling out to Disabled America, and their supporters, to boycott Walt Disney World while they implement this ridiculous idea. I understand the joy it brings to your children, believe me; however, this is bigger than a trip. This is for the people we support. We need to be their voice, and their advocates. Without us they have no one. This is to ensure that they are not expendable as a result of the immature and poor decisions made by those pathetic few, or the “1%.” This is to ensure that Disney understands those with disabilities have needs that they cannot help. This is to ensure that Disney understand the impact of this new policy and the significance of the potential negative repercussions. We need to stick together and really make an impact to where it will hurt Disney the most, in their wallets.
    Thank you,
    Brandon Dietrick

  63. Reblogged this on Show Your Hope! and commented:

    As we surpass the 1 year mark for this ‘New System Introduction’ – I just want to RE SHARE this and keep it on the front burner. These changes are NOT acceptable for many in the disability community and many have chosen to go other places for their “Magical” vacations because of nightmare experiences with this ‘New System’ – Please share this post and help us be heard!

  64. The sad part is, Disney wouldn’t need to do these things at all, if it weren’t for the people who you quoted in red. If people just had some empathy, sympathy or any kind of understanding, they would see someone in your situation and move to the side to let you and your family move right to the front. I don’t see entitlement in anything you said. All I see is a loving, caring family out to make the best of life for their children while they can. I wish you the best.

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