New - Child with SID

[littlesuitcase]

Hi everyone,

I am new to this board and am preparing to go to WDW at the beginning of February.

I have tried to read some of the post but there are so many terms and acronyms that I am not sure what half of it means. Can anyone suggest a place to learn more about taking a kid to WDW.

Also wanted to know if there are areas we should avoid or places we should not miss.

Both of our kids have sensory issues but my Son's is worse than my daughter. He is in constant motion and has no fear so safety is an issue. If someone touches him unexpectedly he will get upset - sometimes freak but often will just shutdown completely. I expect lineups to be a problem for him so any advice for that would be great.

We are staying at PopCentury and using Disney bus to get around.

Thanks for any advice you might offer.

Helen

 

[SueM in MN]

Hi everyone,

I am new to this board and am preparing to go to WDW at the beginning of February.

I have tried to read some of the post but there are so many terms and acronyms that I am not sure what half of it means. Can anyone suggest a place to learn more about taking a kid to WDW.

Also wanted to know if there are areas we should avoid or places we should not miss.

Both of our kids have sensory issues but my Son's is worse than my daughter. He is in constant motion and has no fear so safety is an issue. If someone touches him unexpectedly he will get upset - sometimes freak but often will just shutdown completely. I expect lineups to be a problem for him so any advice for that would be great.

We are staying at PopCentury and using Disney bus to get around.

Thanks for any advice you might offer.

Helen

Welcome to disABILITIES.
Click Here to get to a page that lists the general abbreviations that are used on the DIS Boards. You will find some additional ones on this borda, but most of them are things like "SID" that people with children with the condition will recognize, but others might not have heard of/seen before.
The main other one we use on this board are:
ECV = which stands for Electric Convenience Vehicle (we didn't name it and realize that for many people it's an Electric Necessity Vehicle). It's also called a scooter
GAC = which stands for Guest Assistance Card. This card is a tool for CMs (Cast Members = Disney Employees) so that they can tell what sorts of assistance are needed for people who have disabilities that are invisible or hard to see. The GAC is not meant to (and usually won't) shorten or eliminate the wait in line, but will provide conditions that are more suitable to the persons special needs. In your case, you might find that a less crowded, quieter space or being able to bring a stroller in line with you the same as a wheelchair, allows your child to be in the park without "freaking out." You can request a GAC at Guest Services in any of the parks. Take your child with you and explain his needs to the CM - you don't have to go into a lot of detail or specific diagnosis; just be able to explain what the needs/issues are. GACs are usually issued to be valid for the length of your stay and one GAC is good at all the parks. It will usually be issued for up to 6 people (5 plus the person with a disability).
Here is a link to a website that might be helpful. It has a lot of information on kids with sensory issues.

Also, if there are specific things you wonder about, that would help us to give you advice. How old are your kids? What sorts of things do they like?
What sorts of things are a problem? (For example, some kids have problems with sound, others don't have too much problem with that, but have problems with lights or sudden movement).

 

[littlesuitcase]

Thanks Sue - I had heard that Disney did deal with some disabilities but wasn't sure if they recognized the things you can't "see" -

My son is 6.5 but more about the level of a 5 year old. While we are still trying to identify what he falls under for school purposes I would say he is very much like a kid with aspergers but he does seem to have some social wants. He is sensitive to sound especially "busy" sound and will cover his ears and get agitated when this happens. Bright light can bother him but not always haven't figured that one out. He likes deep pressure but not light touch. He often doesn't "get" people and has a hard time processing social interaction. He eats ketchup on almost everything so I hope they have ketchup at disney! LOL My son is in constant motion - he seems to require less sleep than the rest of us but when he is tired things are that much more challenging. I would say he is a kid who would jump on a rollercoaster because he likes fast fast fast but if someone in line touched him he could shut down in a second. Very challenging at times - he is not always aware of safety and danger.

My daughter who is 8 is almost the opposite to my son - she has very poor gross motor skills. She tires easily if we don't "wake" her muscles up before we do something. She is sensitive to sound, doesn't like dark unless someone is right with her and helps her to visualize what she is going to see or not see - hear etc.. She is not a fan of fast moving anything but can be encouraged to do some rides.

Hope this gives you some background info. I want our trip to be fun and if there are things I can do to help my son (I am not as concerned about my daughter) that would make it even better.

Helen

 

[mbb]

from the Canadian Board, and I'm glad that you're here, as well!

Sue gave you soooo much great info..I'm sure that you'll be able to use lots of it...and if anything else comes up, we're glad to help


Mary Beth

 

[Nik's Mom]

Hi littlesuitcase, and welcome!
My son is 5 1/2 years old and is on the autistic spectrum (some will refer to it as ASD).
Please make sure you get a GAC from guest services. It will be very helpful. If your son finds comfort in a stroller, the GAC will allow you to take the stroller in lines for rides.

 

[littlesuitcase]

Thanks everyone.

Nik's mom - thanks for letting me know about the stroller. I am not sure if we will use one - I find he benefits from the "work" that comes from walking but I think there may be too much walking. Wish this wasn't the first time for our family - it is so hard to know what to expect.

Helen

 

[Nik's Mom]

You may have to just play it by ear. Remember to have breaks during the day, and if you need a stroller, you can always rent at the parks. Have fun!

 

[SueM in MN]

You may have to just play it by ear. Remember to have breaks during the day, and if you need a stroller, you can always rent at the parks. Have fun!

A lot of people have posted that the strollers at WDW parks worked very well for their kids on the autism spectrum. The ones at MK, AK and Epcot are a hard plastic (some kids like the firm pressure of sitting on them). The sides of the strollers are also quite high (the better to shield). Bringing the stroller in line provides a little "insulation" between your child and all the other people and also provides a nice little portable low stimulation safe spot.

 

[BethanyF]

Wow, the description of your son sounds almost exactly like mine. Except its ranch dressing instead of ketchup, lol.
Sam has been to WDW twice so for....actually it was the first trip when I realized something was 'off' and later found out SID and Autism spectrum. I have pics of him with a huge happy smile and covering his ears. I learned that the ear covering is his way of grounding himself (deep pressure on his jaw joints).
He is at a point now where he can tell me if something might set him off 'Mommy, we cant watch the parade, because I have to cover my ears' Same for stage shows 'I dont like spectacular music'
We just go at his pace and let him lead as far as what he can and cant handle. We do try to get him to try new things, but if he shows any signs of overload, we get out of there. We had to make a mad dash out of Carousel Of Progress when he looked in the room and started freaking out. Yet he will beg to go back on Goofy's Barnstormer and Big Thunder Mtn. The tea-cups tend to regulate him when he is overwhlemd...something about the spinning jars him back to normal.
As far as lines....we make good use of FastPass. If there isnt a FP available, and we choose to wait, DH and I sheild him as much as possible so he doesnt get overcrowded (dh on one side, me on the other). The only time we had a problem was in the stretching room in Haunted Mansion, but I get claustrophobic in there so I can see how someone with SID would have a problem. Once we were out of the room he started to calm down.
As long as we gave him time to refocus and regulate, he was ok. Playgrounds, a snack, even sitting ona bench for a while helped. It gives him a chance to unwind from the excitement and prepare himself for the next step.
Ok, Im babbling and tired, so Im probably not making much sense. But if you have more questions, Ill be watching this thread or you can PM me.

 

[kdtwiss]

Hi, sorry to hijack here - but I had heard there was a pass that allowed children with autism to not have to wait in line. I know they have fast pass now, but really there is no way I could walk up to a ride - get a ticket that says to come back in an hour and walk away - that would be torture for my son. I have 4 children, 2,5,6, and 9 - my oldest is autistic. My husband and I will probably be splitting up for part of the day so they can go on the fact rides while I stick to the kiddie ones. If there is no longer a pass that allows children that are autistic to bypass the wait - I am not sure we could even go - I am so disappointed - we have been wanting to go for years - and now we can finally go and they no longer have the pass???? Could someone please get back and let me know if it is true that there no longer is a pass available? y son's problem really is not crowds or noise or lights - he just does not get waiting. If he had to wait for every ride or come back at a later time to every ride - I may as well forget it.

 

[Nik's Mom]

I believe they encourage us to use fast pass now. My son is autistic too. If I know a ride will cause a meltdown, then I will wait with DS somewhere while DH gets a fastpass. Sometimes you have to be creative when touring WDW with someone on the autistic spectrum. Please go on your trip. You will not regret it. It will take a little extra planning, but it is so worth it. Stay posted to this board. You will find lots of tips!

 

[SueM in MN]

Hi, sorry to hijack here - but I had heard there was a pass that allowed children with autism to not have to wait in line. I know they have fast pass now, but really there is no way I could walk up to a ride - get a ticket that says to come back in an hour and walk away - that would be torture for my son. I have 4 children, 2,5,6, and 9 - my oldest is autistic. My husband and I will probably be splitting up for part of the day so they can go on the fact rides while I stick to the kiddie ones. If there is no longer a pass that allows children that are autistic to bypass the wait - I am not sure we could even go - I am so disappointed - we have been wanting to go for years - and now we can finally go and they no longer have the pass???? Could someone please get back and let me know if it is true that there no longer is a pass available? y son's problem really is not crowds or noise or lights - he just does not get waiting. If he had to wait for every ride or come back at a later time to every ride - I may as well forget it.

It's not a pass, it's a Guest Assistance Card (we call it GAC, so we don't have to type so much)and it still exists. It is not (and was never at WDW) a front of the line pass. It is not meant to shorten or eliminate waits; it is meant to be a tool that lets the CMs know what sort of assistance people with invisible disabilities need. That might include a quieter place to wait, being able to bring a stroller in line.
I don't want to get into a lot of specifics of what a GAC might allow, because I have been informed that some people without special needs have abused the information.
Disneyland got rid of the Special Assistance Pass a year ago. There was a lot of "chatter" and an email campaign that was calling for boycotts of Disney based on rumors that people were spreading. The fact is that Disneyland got rid of the Special Assistance Pass which treated all people the same and began a Guest Assistance Card that tries to fit the assistance the card provides to the needs the person has.

As Nik's Mom mentioned, many people with autism are able to use fastpass by being a little creative.
Also, depending on what time of year you go, you may find that the wait for rides is not as long as you think. If you stay on site and are able to go to the early morning hours, you can often go on all the Fantasyland rides with very short waits before the morning is over (some walking right on, without waiting at all). If you look at the GAC as insurance rather than a necessity for each line, that is a good way to use it. You won't need it for every line and should not use it if the standby line wait is 15 minutes or less. By limiting your use of it to when it is needed, you help ensure that Disney won't get rid of it (because of complaints from people who others using them).

 

[mbb]

.........
Also, depending on what time of year you go, you may find that the wait for rides is not as long as you think. If you stay on site and are able to go to the early morning hours, you can often go on all the Fantasyland rides with very short waits before the morning is over (some walking right on, without waiting at all). .......

Exactly why we go in January/early February.

We arrive at the Parks FIRST thing in the morning...and we're DONE FantasyLand, Buzz and IndySpeedway by 10am or so. Stroll on over to ToonTown, hit GB, and we're ready for a late Character Breakfast, or an early lunch.

Pools in the afternoon...
Kid's Clubs for the boys in the evening - once or twice.

My recipe for a perfect family vacation at WDW...with twin ASD/SID wonderboys!!

 

[riu girl]

Helen,
Welcome to the DisAbilities board.

FYI, DD7 has ADHD, SID tendencies and ASD tendencies .

We recently returned from our first WDW vacation and were SHOCKED at how well everything went. Prior to the trip, I had read a ton on Dis as well as on www.allearsnet.com. I kept waiting for some disaster and it NEVER happened. Not even close.

Staying at POP will make things easier then staying off-site. We stayed at All star movies the week before Christmas and thought the DIsney transportation was so simple to use. Staying on site was the only way to go for us. I'm glad you have chosen to do so also. We are planning on staying at POP next trip also, it looks fabulous.

If at all able, rent the WDW stollers. They are huge and will give your kids the seperation they might need at times. Even if they only spend half of the time in and half the time out, your son will still be able to burn off tons of energy. Sometimes things tend to get very crowded and noisy, the stroller will give your kdis the distance they might need.

Whatever is calming for him, take it. We took books, blankets, familiar toys, bubbles, glow sticks (form the dollar store), doodle pads, etc and if DD7 became a little "wound up" these would help calm her.

By all means, get the GAC. We only used it a couple of times at Animal Kingdom but used it a lot more at Magic Kingdom. MK was very busy the day we were there (a few days before Christmas) and it did cut down wait times overall. By using the GAC along with fast pass, things will be fine.

Get to know the parks layout as much as you can prior to touring and by all means, get to the parks EARLY. We entered Fantasyland shortly after opening, and silly me asked a CM if it was open yet. It was almost empty. And that was just a few days before Christmas. We zipped through Fantasyland quickly and easily. As we left Fantasyland, it was very crowded.

I wonder if you might want to request a room at POP with a water view. We live on the lake and I find it very calming for DD7. At POP there looks like a lot of buildings (not courtyard view) that have a water view (70s, 50s, and 60s, I think). Being onthe back of the bilding might be quieter then courtyard view also.

Any questions, please ask.

Suzy V.

 

[riu girl]

Another quick thought, go at your kids pace, not yours. We only toured two days (one day at AK and one at MK) and were there from park openings until well after close. I think touring everyday would have been way too much for all of us.

It was 3 pm in MK, kids are doing great and DH says he wants to take a nap. I said NO WAY if the kids are fine, we are going for it. So what did we do: DH feel asleep in the stroller while the kids and I did a couple of longer attractions. I'm not kidding, these rental strollers are HUGE!!!! I have a picture to prove it.

BE willing to make compromises and not expect to DO IT ALL. I was amazed at the stamina of the kids, but the stroller really helped with that. As well as not touring two days in a row.

If you want to tour everyday, I would recommend the mid day break. We didn't do this, but I have read time and time again that this makes all the difference.

Have a wonderful trip.

 

[Nik's Mom]

Great comments by Riu girl and Sue and mbb. Someone should write a book about how to take a disabled child to WDW. It's so scarry to take your special needs child to WDW for the first time. But in the end, it always works out. I know my DS has had a great time each time we go!

I have to admit that I have never rented a stroller when we go. We bring our own from home. On our last trip, that meant 2 strollers. I think we just might leave our strollers at home this time, thanks to Riu girl's comment. I didn't realize they were so big. My autistic DS will turn 6 on our trip, but he is very tall for his age. I'm glad to hear that he can fit in WDW strollers.

 

[riu girl]

Your son will have no problem (height wise) with the stoller. DD7 was 7 1/2 on the trip (and is the tallest in her class, she is VERY tall) and NO problems!! We found the double stroller very easy to manage and easy to push. They must have some sort of aerodynamic design or something. Also, if you do decide to rent, on the first day, buy a multi day rental. You pay for all your rental days at once and get 10% off . The days do not have to be consecutive. Then on the other rental days, you can simply bypass the line where you have to line up and pay and head over with your multi day ticket to the line up where they actually hand out the stollers. Sorry, this may aound confusing, but it is NOT. They have everything so organized at the stoller rental area (just like with everything else at WDW).

I just can't believe how "on the ball" the cms at DISNEY are. It is truly amazing how everything goes so smoothly. But as I mentioned before, being at the park early and knowing the park layout somewhat will make things easier.

Its funny, you mention that there should be a book published, in fact, there is a book being published this spring about Disabilities at WDW. From what I have read about it, it looks like it will be great. I think it comes out this spring. I think there is more info. on www.allearsnet.com about it. If you haven't already, sign up for their weekly e-newsletter, I think that is where I have read about (and saw a pic of the front cover) of the book.

Have a wonderful holiday.
Suzy V.

Suzy

 

[Nik's Mom]

Thanks, Suzy!

 

[littlesuitcase]

Thanks everyone - I think I will get a stroller and the multiday pass.

We had planned to do the parks during the week but are open to taking breaks if needed - I figured the parks would be busy on the weekends so have planned an afternoon doing outdoor stuff at Fort Wilderness and doing a character brunch.

Bethany - my son is also "Sam"

It is so hard to even imagine what it is like at WDW so all of your comments are really so helpful and knowing others have gone with special needs kids makes me feel less stressed.

Helen

 

[littlesuitcase]

I forgot to ask about the GAC - where do you get this? I thought I had to bring some kind of paperwork but some threads suggest you do not. Maybe it was the old way but I am pretty sure I read that I have to get this at each park we visit - is this true? And if I understand this - I only use it if necessary - when the fastpast is not available or there is a long wait (more than 15 min) .

We are there feb 5-12 - this is part of the slow season - can we expect not to see huge crouds or is it always busy at disney?