Introducing myself...

[Dmom2three]

Hi! I am new to the board. We are planning our 1st ever Disney trip July 22-28. (Planning to work Sea World in as well - we are a military family and have free admission). We will be staying at Shades of Green.

We have 3 kids all with special needs.

S is the oldest. She is 9 and has SPD, very severe ADHD, and high-functioning autism. She also has neurofibromatosis type 1, which has caused her to have 2 benign brain tumors. One of the tumors is in her brainstem and cervical spine. The other is in her cerebellum. The brain tumors cause her to overheat easily and become sick to her stomach. She is sensitive to noise sometimes - it seems to depend on the pitch of the noise.

IE is in the middle. He is 6. He does not have NF...but he does have high-functioning autism and SPD. He is my flapper. He is sensitive to noise and crowds at times. (We may be crazy for bringing him...but he is a Star Wars fanatic)

C is the baby. She is 4. She has neurofibromatosis and has brain tumors on her optic nerves and in the optic chiasm (where the optic nerves meet the brain). She also has global apraxia. She is mostly non-verbal...but she has gotten much better at talking if you are patient and listen carefully. She also has poor tone and tires easily. She has to wear orthotics on her feet. (They turn to the inside and she trips and falls). She can do stairs now...but it is very slow and she can't do more than maybe 10 before getting really worn out.

It is my first time at Disney too. My husband has not been in 20 years. Any suggestions?

 

[Dmom2three]

suggestions for sea world welcome as well...

 

[lanejudy]

Welcome! The FAQ sticky at the top of this forum has a lot of great information. I suggest you start there. With 3 kids all having somewhat different needs, it is likely that you won't be able to perfectly accommodate all 3 at the same time. You and DH may need to split up with them, and/or decide who's "need" is most important at any given attraction. Check out some uTube videos to see rides and even some of the lines.

For your youngest, I suggest you plan to use a "stroller-as-wheelchair" which will then allow you to take the stroller into lines. It will help preserve her stamina and also avoid lines. She can certainly get out and walk when she feels like it.

Sensitive to noise for the other 2 - I suggest you look into noise-canceling headphones. And maybe try to avoid rides or shows that might be too loud for them to handle (fireworks booms, etc.).

Really the only way to avoid crowds is to go during an off-peak time of year, which likely means pulling the kids out of school. Late July is going to be hot and crowded. Even alternate entrances will be crowded at this time of year. Check out some touring plans and make good use of FastPasses.

Enjoy your vacation!

 

[poofsgirl]

Hi! I don't have any helpful advice but just wanted to say hello We are also a military family and I myself have a 3rd nerve schwannoma that they originally thought might be NF, but are now saying I have schwannomatosis. I am lucky and only currently have double vision (watch and wait after surgery 2.5 years ago). I hope your kiddos have a blast! I can not imagine having a child with a brain tumor, you are a very, very strong woman!

 

[Piper]

I have NF type I also. I have 3 tumors that show up in MRIs of my brain and a few on my spine. The brain tumors cause intermittent dizziness and constant ringing in my ears. I also have nausea and have found that Ginger Ale is one thing that helps a little.

I have about 30 neurofibromas on my skin--I am lucky there aren't more.

I second the stroller as wheelchair idea. It will help you both!

 

[KPeveler]

welcome to DISboards!

let me start by saying that you are not the least bit crazy for wanting to bring any one of your children to Disney World. The best thing about our forum for disabilities here on the DISboards is that there is at least one person, and usually many, who have one or more of the issues that your family does.

I am a military brat, and I stayed at Shades of Green. I have a couple of questions that will help me give better tailored advice.

How many, if any, of your children use wheelchairs or will be using them in WDW? As someone has noted, there is a way to use a stroller as a wheelchair in the queues, but that would only work in the case of your youngest and maybe your middle child. it sounds like your oldest may also benefit from having a wheelchair handy. in fact, I don't know as wheelchair use will end up being an option for your family, at least at times. You can use a stroller is a wheelchair for the youngest (which also means you don't have to carry her nearly as often) and having a wheelchair or special-needs stroller on hand will give the older two not only a place to sit, but also a place where people are less likely to be bumping into them and touching them.

Are any of your children elopers? I know some children on the spectrum are runners, and since you were going to be outnumbered, it would be easy for one of them to slip away from you in a crowd.

Are you flying or driving to WDW? And will you have your own car in Disney world? Shades of Green has its own buses, but to get to MK and Epcot, their buses drop you off at the Tickets and Transportation Center (TTC), and then you have to take the monorail ticket to either park. My family tried the buses once at Shades of Green, and after that we made sure we had a car. This is even more true if you need to transport wheelchairs, strollers, and other medical equipment.

Now for what I have learned. There is a First Aid center, as well as a Baby Center each Park. First Aid has been a lifesaver for me. It's a quiet, air-conditioned place with cots to lay down, and is staffed by nurses the whole time. While I do not have an NF, my own diagnoses cause an inability for me to regulate heart rate, blood pressure, and body temperature. This means that become overheated easily -- the nurses in first aid in Disneyland (my home park) know me on sight. They can also give you a ice packs or cold towels to take into the park ( you don't have to stay there to use the icepack - it is disposable).

I also have ADHD and sensory problems, so I suggest that you try to alternate rides with shows or other quieter things.

I highly suggest you check out this link:
http://www.wdwinfo.com/wdwinfo/ridelength.htm
it is the length of every ride in Disney World - some of them are upwards of 35 minutes. So there may be things that some of your children wish to do the others do not.

More than anything I suggest going either to a bookstore or Amazon and buying Passporter's Open Mouse, a guidebook for guests with disabilities and special needs. It proved absolutely invaluable to me, even though I have been to Disney many times. it gives a good description of every ride, what to expect, etc.

Do not expect to get everything done in every park. Instead, perhaps have each child pick out their top one or two rides in each Park that you will be visiting. This will give you a chance of hitting everybody's favorite, so no one feels left out.

Especially for anyone on the spectrum, check out YouTube videos of rights and shows. Some rides may be too much stimulation, or stimulation of the wrong kind. I carry earplugs, just the regular soft kind you can get at a drugstore. This may be especially useful for your oldest daughter, as some of the shows can get quite loud.

I know I've written a lot, there's a lot more that I could write. Again, look up the title "Open Mouse" - here is the Amazon link
http://www.amazon.com/PassPorters-M...TF8&qid=1372325110&sr=8-1&keywords=open+mouse

Also, I would talk to guest relations about a GAC for your family, or members of it. There are many stamps available, each of which provides different accommodations to allow equal access at attractions. Guest relations won't want a doctors note or anything, you just have to explain what your needs are and what limitations or restrictions you have that keep your family from wandering the parks like an average person.

Hope I haven't overwhelmed you, and please keep asking questions! There's usually someone here with an answer.

 

[Dmom2three]

Thanks for the replies. I am not sure that I am all that strong..I just take it as it comes. My mom had severe NF and my dad had a host of problems including bipolar and schizophrenia...so I guess I have just never known anything different. It is okay though...other people have a lot worse problems.

To answer your questions:

We are planning on bringing a double stroller for the younger two. It has a canopy, so they can "hide" if they feel like it. I also have noise cancelling headphones for the older two. I had not thought about what to do with the oldest yet. She is 53 1/2 inches...so she is really too big for the stroller, but when we did another smaller theme park near us she still wanted in it. (We did not get annual passes to there this year. It is not very autism friendly. Disney is so much bigger...one reason I worry.) The OT and PT and a doctor are sending notes that say that they will need a stroller pass. The PT went recently (and had a disabled family member with her) and said she would need a stroller pass for sure and that it was best to take a note because for the not so obviously disabled, some cast members were wanting to see it. C has AFO's though, so you would think that would help...but who knows. (I just get scared because at the other park people were very rude about it.)

My middle one is an eloper. That worries me too. He is very quiet about it as well. I am thinking of getting temp tattoos or something to put on him and the nonverbal younger daughter. Neither of them could tell them my phone number. he could tell them our names and his name - if he were willing to talk, which he sometimes is not. My youngest one cannot say our names or her name. I do have a backpack leash for her that looks like a monkey. She loves wearing it.

Both of the older ones have little impulse control. They tend to run out in front of stuff.

We are driving. We are stopping by the beach on the way down. So, we will have our van there.

Thanks for the tips on the books as well as the first aid station.

I am trying to keep it from the kids till time to go. They will get too anxious. We will get to the hotel in the afternoon the day before we plan to go to the parks. Should we go to downtown disney? that is free admission, right? it does not count in your 4 days?

 

[poofsgirl]

Downtown Disney is free and you do not need a pass.

 

[KPeveler]

Thanks for the replies. I am not sure that I am all that strong..I just take it as it comes. My mom had severe NF and my dad had a host of problems including bipolar and schizophrenia...so I guess I have just never known anything different. It is okay though...other people have a lot worse problems.

To answer your questions:

We are planning on bringing a double stroller for the younger two. It has a canopy, so they can "hide" if they feel like it. I also have noise cancelling headphones for the older two. I had not thought about what to do with the oldest yet. She is 53 1/2 inches...so she is really too big for the stroller, but when we did another smaller theme park near us she still wanted in it. (We did not get annual passes to there this year. It is not very autism friendly. Disney is so much bigger...one reason I worry.) The OT and PT and a doctor are sending notes that say that they will need a stroller pass. The PT went recently (and had a disabled family member with her) and said she would need a stroller pass for sure and that it was best to take a note because for the not so obviously disabled, some cast members were wanting to see it. C has AFO's though, so you would think that would help...but who knows. (I just get scared because at the other park people were very rude about it.)

My middle one is an eloper. That worries me too. He is very quiet about it as well. I am thinking of getting temp tattoos or something to put on him and the nonverbal younger daughter. Neither of them could tell them my phone number. he could tell them our names and his name - if he were willing to talk, which he sometimes is not. My youngest one cannot say our names or her name. I do have a backpack leash for her that looks like a monkey. She loves wearing it.

Both of the older ones have little impulse control. They tend to run out in front of stuff.

We are driving. We are stopping by the beach on the way down. So, we will have our van there.

Thanks for the tips on the books as well as the first aid station.

I am trying to keep it from the kids till time to go. They will get too anxious. We will get to the hotel in the afternoon the day before we plan to go to the parks. Should we go to downtown disney? that is free admission, right? it does not count in your 4 days?

You may want to think about renting a wheelchair off-site - they will deliver it to your hotel, and they are really not that expensive off-site. That way you can use it at DTD (which is bigger than you think), Sea World, etc.

No one says that you must use a wheelchair full time if you rent it - but it can be handy to have ready if your daughter needs it. You could end up literally miles away from the nearest rental spot in some parks, and if you rent off-site, you will know that the wheelchair will actually fit her and be comfortable to sit in. There are some places, even shows, which do not have seats, and there are almost never places to sit while you are waiting in a queue.

You definitely can get temporary tattoos, though I have seen some parents (no idea if their child had to disability, special need, or was just a kid who didn't know his parents phone number) who wrote their phone number on the child's arm in sharpie marker.

you should be prepared for the Cast Member in Guest Relations to not even look at a doctors note. In fact, they are supposed to refuse to look at a doctors note. What they are allowed to do is look at a note from you. I found it easier, when I was first getting a GAC, to write down my concerns about touring the Park. Sensory sensitivity, autistic shutdowns and meltdowns, the problems with heat sensitivity -- I've wrote things like this down in as simple a manner as I could. You don't have to give the note to the cast member, but it may help you remember everything.

the orthotics that your youngest wears should be sufficient cause for a cast member and guest relations to understand that her stroller needs to be her wheelchair. My understanding is that any regular stroller (that is, not a special-needs stroller which is designed to be used as a wheelchair) needs a GAC to get into the line. Many strollers are difficult to see into, but when you get a GAC for the stroller they will give you a tag which will be visible to the cast members (and not so incidentally, the other guests).

There may be other GAC stamps which will benefit your family (in fact, I'm pretty sure there will be, but I am no expert on all of the stamps available in Florida). Bring the doctors note if it makes you feel better, but you should be prepared for them to refuse to look at it and require you to explain the needs of your children.

 

[Dmom2three]

Thanks. I will work on writing it all out myself. I can usually just recite it though. I have just had some people tell me GR was mean about it. Others said they just gave them the pass.

Once, at a different park I went through the line to get the pass. There was another HFA child in the line as well. The lady was very rude. She said they do not look disabled. I said you cannot "see" autism all the time, but I assure you that if sometimes you can. To you it will look like they are misbehaving, in reality they are not.

She said. OK...but just so you know. People who are amputees, have SERIOUS heart conditions and/or use a wheelchair are not allowed to ride (insert names of 3 very popular rides). So it is only fair that these kids not be allowed to ride them either. (not really fair to any of the groups mentioned...I can understand having to remove a prosthetic or make sure it is very secure on an inverted roller coaster...but to ban them from riding seems overly harsh. Most amputees I know are no different that nonamputees other than they are missing part of a limb...and they function just fine without it. Due to NF sometimes causing people to loose a leg..i know several.)

There was no other entrance either on 90% of the rides. If you used it you had to walk to the FRONT of the line and show the pass. Then pass people right there. (Cue very rude comments)

I guess that is why I am so nervous about it. I am not going to let myself feel bad about the GAC. I am trying to tell myself the people who are mean about it are just not understanding. If they had a child like mine, they would understand...but they do not and so they don't. (I never really understood till I had them. I do not think it is possible to understand without experiencing it firsthand.)

 

[Piper]

Thanks. I will work on writing it all out myself. I can usually just recite it though. I have just had some people tell me GR was mean about it. Others said they just gave them the pass.

Once, at a different park I went through the line to get the pass. There was another HFA child in the line as well. The lady was very rude. She said they do not look disabled. I said you cannot "see" autism all the time, but I assure you that if sometimes you can. To you it will look like they are misbehaving, in reality they are not.

She said. OK...but just so you know. People who are amputees, have SERIOUS heart conditions and/or use a wheelchair are not allowed to ride (insert names of 3 very popular rides). So it is only fair that these kids not be allowed to ride them either. (not really fair to any of the groups mentioned...I can understand having to remove a prosthetic or make sure it is very secure on an inverted roller coaster...but to ban them from riding seems overly harsh. Most amputees I know are no different that nonamputees other than they are missing part of a limb...and they function just fine without it. Due to NF sometimes causing people to loose a leg..i know several.)

There was no other entrance either on 90% of the rides. If you used it you had to walk to the FRONT of the line and show the pass. Then pass people right there. (Cue very rude comments)

I guess that is why I am so nervous about it. I am not going to let myself feel bad about the GAC. I am trying to tell myself the people who are mean about it are just not understanding. If they had a child like mine, they would understand...but they do not and so they don't. (I never really understood till I had them. I do not think it is possible to understand without experiencing it firsthand.)

That lady didn't know what she was talking about! People are "allowed" to ride anything they can safely ride! They even have wheelchair cars for some of the rides. If it was the "mountains" she was talking about, that is up to the discretion of the rider. I choose not to ride many of the rides that are jerky and/or have fast starts/stops, and/or have drops because my doctor doesn't think that is the best choice for my very fragile back.

Even though I use a mobility aid and sometimes wear braces, I would be "allowed" on the ride!

 

[disneyworldmom2]

My son also wears AFO's, and used the stroller as a wheelchair when he was smaller. I will be very hot in July, so if possible you may want to limit wearing the AFO's to night time when it is cooler. If that isn't possible, I would recommend taking extra socks and visiting the First Aid stations to change them occasionally. I know my son's feet get get very hot and sweaty, and changing socks helps. (Also, take some mole skin to put on the braces just in case something starts rubbing from the extra walking.)

If your kids are like my son, he sometimes gets tired of his headphones. He isn't very gentle about it, as he will throw them if he doesn't want them anymore. I have attached a lanyard to them, and keep one hand on the lanyard so if they go airborne, they don't go very far!

Cooling bands also help keep everyone cool during the hot months.

 

[disneyworldmom2]

One other thought for your son who runs... I have gotten ID tags that velcro to my son's shoes that I have written cell phone numbers, etc. on. If he would tolerate an ID tag around his neck, there are places where you can custom make an ID tag and put your contact info on them. (You could do this ahead of time to get him use to it, or I've seen places around Disney where you can make them too.)

 

[lanejudy]

... Once, at a different park I went through the line to get the pass. There was another HFA child in the line as well. The lady was very rude. She said they do not look disabled. I said you cannot "see" autism all the time, but I assure you that if sometimes you can. To you it will look like they are misbehaving, in reality they are not.

She said. OK...but just so you know. People who are amputees, have SERIOUS heart conditions and/or use a wheelchair are not allowed to ride (insert names of 3 very popular rides). So it is only fair that these kids not be allowed to ride them either. (not really fair to any of the groups mentioned...I can understand having to remove a prosthetic or make sure it is very secure on an inverted roller coaster...but to ban them from riding seems overly harsh. Most amputees I know are no different that nonamputees other than they are missing part of a limb...and they function just fine without it. Due to NF sometimes causing people to loose a leg..i know several.)...

There's no excuse for rudeness. However, at that park (you indicate it was a "different" park so assuming not WDW) it is highly possible they have some safety regulations requiring full limbs for certain rides. This is actually a safety issue - the rider must be able to brace him/herself and due to the specifics of that ride, both arms and/or both legs may be required. I do know of some parks (NOT Disney) that have such restrictions and it's a liability and safety issue. Since I wasn't there and don't know the specific park, I can't say for sure. But there could be valid reasons why an amputee would be restricted from certain rides. No excuse to "ban" a person with autism from that same ride, though, unless they had the same "safety-related" concerns.

As to obtaining a GAC at WDW, we've never had a problem, never needed a doctor's note. I have been at the counter and overheard other's being questioned on their request for a GAC - usually because the person needing the GAC is not present ("he's just outside, I didn't bring him in"). As long as you can explain legitimate need, there should be no problem. A GAC it not diagnosis based, it is need based so discuss the needs not the diagnosis. And be aware there are some things that simply cannot be accommodated - distance between attractions, short waits, transportation or restaurants, etc.

Enjoy your vacation!

 

[Betty Rohrer]

at WDW no dr note needed for the GAC and stroller as a wheelchair tag. you do need both as you asked for both. they will also allow the stroller as a wheelchair in the buildings where strollers are not allowed. hope you have a great trip