What help should I request for my special needs son?

toniosmom

AKV, BCV, BLT Owner!
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Jun 18, 2009
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My DS5 is perfectly healthy looking to anyone who meets him. However, over the past year, he been diagnosed with several special needs not "visible", including ADHD, ODD, a mood disorder (may be bi-polar), auditory and sensory processing disorder, anxiety issues, just to name a few. He is on meds which do help, but there are many circumstances where medication just doesn't do the trick. I want to make sure that his Disney experience is everything it can be and that I don't wind up with a nervous breakdown. He is prone to tantrums, sensitive to chaotic situations, and cannot always sit still. I often have a hard time getting him to sit down in his chair for the length of our dinner, which is why we will be eating in the villa for the duration of our trip.

I know that I can request a Guest Assistance card, but I'm not sure what to tell them. If they look at him, they will see a healthy robust boy and think I'm taking advantage of the system, which I assure you I am not. I am well aware of how to use fast-passes to help my situation, but not all attractions have that option.

Do you have any advice? I'm not sure what to ask for ... I'm not really sure what kind of accomodations are available to us.

Thank you all in advance.

A struggling single mother..... :flower3:
 
Toniosmom, I just wrote a Private Message to you, but something is funky with my system here, so I can't get it to you. Can you PM me and then it may work if I reply to that?
 
WDW is very used to kids with Autism spectrum genetics and the PPD-nos/Apsergers end of it which the manifestations for an undiagnosed child match your description of your child very closely . Dig back through the threads and you will find list of great ideas and experiences about how to make WDW the magical place that it has the potential to be.
IF you want more information on Aspergers you can check out the community board where there are lots of parents who have faced the challenges you are facing now
Welcome
Bookwormde
 
If you have not looked at the disABILITIES FAQs thread, I would suggest you start with post #6, which is about Guest Assistance Cards.

Rather than try to think of what to ask for, it is generally better to think about what his needs/issues are and explain those to the CM in Guest Relations.

There are a couple of reasons for that - one is that you don't know what to ask for or what accommodations they have available. Sometimes people have asked for a specific thing that other people suggested and then found after their trip that other things existed that would have helped more. If they had explained their needs instead of just saying "I need xx" they would have gotten other assistance that would have helped more.
One thing I would suggest thinking about is whether being able to have your child with a stroller in line might be helpful. Many children with special needs find that a stroller provides a 'safe haven' that is helpful while in line.

Another reason is that things do change from time to time.

Post #3 of the disABILITIES FAQs thread has information and links about dealing with different conditions and concerns. Check out the autism information there because some of the hints will be helpful.

Besides Fastpass, some other suggestions that people have found helpful:

- get to the parks as early as possible. Even during the busiest times, it is possible to do a lot in those first few hours without long waits.

- using a touring plan. Many people have posted that they used RideMax or TourGuide Mike to avoid waits. Some posted that their longest waits were less than 10 minutes. Besides avoiding waits, the touring plans can help you be in the least crowded area of the least crowded park. That can help more than a GAC because the areas outside of attractions can be as much or more of a problem than the actual attractions/queues.
 

Thank you all for your responses. :goodvibes

Yes, I had already read through the FAQs thread. I agree with you that sometimes the area around the attraction can be more difficult than the attraction itself. I have already planned to go to the parks in the mornings and spend the afternoon swimming (my son's favorite activity.) Good idea about the touring plans -- I will definitely check them out. :thumbsup2

I read the part about using a stroller in line and definitely plan to ask for that consideration. I think it might be helpful, especially on attractions that would not have a quiet place to wait. My son is very big on finding a quiet place when he is aggitated and I have learned to just shut up and let him go there.

I posted my question mostly because I wasn't sure how much I needed to explain to Guest Services since I have never made such a request before. I had someone tell me to just say that my son is autistic, thinking that the CMs would need to hear some kind of "familiar" diagnosis than my list of issues. (I'm also quite superstitous about applying any kind of illness to my son that he doesn't already have, so I could never do that.:eek: I have been advised that my son is definitely not autistic.) Having said that, I'm sure that some of the tips for autistic children may help him.

Thanks again for all of your advice. I am so looking forward to our trip and pray that I can provide my son with a wonderful experience.
 
Toniosmon,
Autism is not an "illness" it is a genetic variation so you do not have to be superstitions about "getting it". What you describe is definitely" autistic characteristics" so just use that term and the CM should understand.
Whoever advised you that your child did to have Autism genetics was grossly incompetent, and probably did not have any training is Aspergers. Get a copy of Tony Attwood's "The complete guide to Aspergers" C/2007 which is available on Amazon for about $17 and you will be able to make your own informed judgment, and be able to get your child the support that he needs.
He is the leading clinician in the world for this field.

bookwormde
 
Bookwormde,
Thank you for your reply. You're right -- Autism is not an illness and I should not have classified it that way. I will definitely check out Tony Attwood's guide.

I have learned that we have to be the advocate for our loved ones, especially children. Over the past year, I have driven myself crazy checking out various resources and assistance for my son. He is currently in a behavioral program, which is considered partial-hospitalization, and is finally being discharged next Tuesday. The psychiatrist on staff feels he is now stable on his meds and is ready to return to "school", so he will be starting my town's special ed preschool the day after discharge. I have met the teacher and love her. My son has also visited the class and appeared to fit in very well. I'm confident in this decision, but I worry because he has developed some anxiety he never had before he started the program (and it's not a reaction to the meds). I honestly believe he's been there too long (it's supposed to be there 8 weeks and he has been there for almost 5 months), so I'm hoping that the anxiety will ease in the new program.

curemyreed,
I have replied to your PM and included my email address.

Again, thank you all.
 
I simply told them that my son has sensory issues and has random meltdowns that can take up to an hour or more to calm down from when in crowded situations. The stroller *with a large hood for him to pull down* was our first resource so when he needs to shut out the crowds he can at his own will. It is of no help (for us) to have a stroller that has just a tiny sun shade. It needs to enclose him if he needs it.

This last trip we didn't want to haul our stroller along becuse we were also going on a cruise so we rented from MagicStrollers.com (owned by the Owner's Locker people!) because their stroller had a nice shade that worked well for that.

They cannot ask you for any specific details (nor request medical letters/records etc) - you need to provide them the information that you think will help your child the best.

Sometimes I felt funny with the stroller in line because his situation is not visible and if he was feeling fine he might even be getting in and out of it at his will when waiting in line. But it's about what is best for him - not about what other people think. :rolleyes1
 
Sometimes I felt funny with the stroller in line because his situation is not visible and if he was feeling fine he might even be getting in and out of it at his will when waiting in line. But it's about what is best for him - not about what other people think. :rolleyes1

Did you wait in the regular line with the stroller or did they ask you to use the wheelchair line? I thought I read somewhere that strollers should use the wheelchair line.
 
Did you wait in the regular line with the stroller or did they ask you to use the wheelchair line? I thought I read somewhere that strollers should use the wheelchair line.

Depends on the ride. Since the majority of the lines comply with the ADA now, a full size wheelchair or ECV can navigate them so it stands to reason that a stroller = wheelchair uses the same lines. Only one that comes to mind right now that has a special line is TSMM since people have to go up and over using stairs. But - there is still a lengthy queue to go through either using the FastPass or standby line before you get to the stairs/ramp split.
I guess IASW also has a different w/c entrance but that's all that I can remember now.

Because of DS's specific issues we did have another option available to us but it seems that it is better to not post too many details online so people don't start to abuse it. ;-)
 
Because of DS's specific issues we did have another option available to us but it seems that it is better to not post too many details online so people don't start to abuse it. ;-)

I can absolutely appreciate that. I'd gladly stand in a long line with a child that doesn't have any of these issues. It's just reassuring to know that Disney has various accomodations for families like us. Otherwise, I doubt we'd be able to go.
 
I agree about simply stating sensory issues. It covers what you are dealing with without getting too technical.

One thing you may want to look into is intensive sensory integration. We did this a few years ago and it changed ds12's life.Nothing works for everyone,of course, but my ds can handle noise, busyness, brightlights and rollercoasters now. It was a lot of work, but SOOO worth it for us.
 
We're lucky in the respect that DS craves the stimulation from the rides - just hope he doesn't turn into one of the life/limb risking thrill seekers as an adult!! EEK!

The stimulation he gets from the rides actually helps him deal with other aspects of his sensory issues. If it would only help him deal with crowds better. sigh.
It starts mellow for him usually - he'll start messing with his hair or covering his face with his hands. Then he starts buzzing - like a bee - and waving his arms around. If he can't get out of the crowd it will become a full blown meltdown. The first time this manifested was when I took him to WDW alone (no DH!) - we were in line for a ride and it took over an hour to bring him down to almost 'normal' again. Thank heavens I remembered reading about the GAC before the trip! I never expected to need anything like that but I'm SO glad it is there!
His OT was surprised by the crowd reaction too because he is so very social. Neither of us saw that coming. LOL
 
I always put a weighted backpack on DS an keep sour skittles on hand.I'm sure you're familiar with brushing. We did it every 2hours. My ds could actually tell me when the effects were wearing off. I know you're looking for accomodations, but covering what you can do yourself can be empowering!You may already have it all covered...Have a great trip! WDW is my fav because they DO care!
 
Did you wait in the regular line with the stroller or did they ask you to use the wheelchair line? I thought I read somewhere that strollers should use the wheelchair line.

We were there just a month ago and DS (6) uses a large medical stroller. The rides that we had to use a special line for were - PP, IASWAA, Hall of Presidents (had to take an elevator up), Kilimanjaro Safaris and Jungle Cruise to name a few.

Most shows also had a separate line as we were seated in the back row with wheelchair seating. Only Monsters, Inc, COP and Tiki Birds were the only ones I can remember where the seats were not in the last row. This was really good for us though in that if the seats weren't filled DS could talk and it would not disrupt everyone around us.

Believe me some waits in the wheelchair line - most notably KS were extra long as they would bring in a whole truck for the accessible line.
 
regarding shows - last year when we saw Nemo, w/c was in the very front and it is NOT a good place! DS could hardly see the stage. :sad2:
 
As has already been stated many times they will route you to the regular standby line with a stroller as a wheelchair in many rides. What I do in cases like this is bring a blanket and place it over the stroller (if fastpass is unavailable). DD can feel as though she is "safe" and doesn't have to look at everyone around her (eventhough THEY usually look at HER-I wish I had a sign that said staring is rude sometimes!). Earplugs can work for the noise. For us, we know the rides so well now that we hit the rides that have the wheelchair accessible standy lines early when there is a shorter line and less crowds (not to mention she hasn't yet hit overstimulated point) and avoid those in afternoons or near mealtimes. However, the wheelchair alternate entrace rides can be longer waits but you're away from the crowd so the wait doesn't seem longer because you're not enduring your child reacting from the crowd. As was also stated the handicap seating in the various shows can either be in the front or the back. This is very important to note for sensory sensitive kids. We sat in the front in Lion King and it was just too much (lights, fog, movement)-wish I had thought ahead and realized we needed to be in the back as that show is difficult to quietly get up and leave if needed when you're in the front. The 4d movies are just not bearable for dd so we avoid those. We also have problems with the fireworks shows (which is sad because they are my favorites). The handicap areas for Illuminations are too close to the action for dd so we hang way back for those. I've never done the handicap accessible seating for a parade as it's not needed however, they can become dicey when others squeeze in and bump dd's stroller. Sometimes it's just not worth the trouble sadly, which is why I really can't understand when others give the staring or dirty looks when you use a handicap line or bathroom. If they only knew what we have to give up for our children or how so much of our experience is difficult.
The handicap accessible entrances are confusing in so many rides, so we just do the best we can and mainly use GAC for common areas and places that don't allow normal strollers at all such as all the very large buildings where a meltdown would make it very difficult to exit or in lines with a very long queue.

I understand your discomfort about your son not appearing "disabled" and unfortunately you will probably get some stares (or worse) when you use the GAC if you do. My dd has motor and muscle tone issues that are not easy to see that cause a decrease in stamina and endurance and I think sometimes people (not just in WDW) think I am just a mother indulging her child when they see me carrying around (or pushing a stroller or her in a grocery cart, etc) an (almost) 7 yo. That's why I am SO thankful for the GAC! It saves my back!
:goodvibes
 
My son is close to 70 lbs, so there is no way I could ever carry him. Talk about killing your back -- I'd probably not be able to walk or even stand after that!

I like the idea of a towel or blanket for the stroller, so that he can go into his quiet space away from the chaos. That might work well for him.

I had my son evaluated and he qualifies for occupational therapy, including sensory integration and auditory processing. However, I'm on the waiting list for a late day appointment, so he hasn't started anything yet. I have taken so much time off of work for various evaluations, etc., that I just can't take any more time without jeopardizing my job. I'm a single mother, so I'm it as far as appointments go. They tell me we're next on "the list" so I'm hoping that we start the therapy very soon -- he really needs it.

The developmental behavior pediatrician recommended the brushing last summer, but he would have no part of it. I'm going to bring the brushes with me to WDW -- perhaps he will appreciate it there. I'm not sure how the weighted pillow works yet, but am going to ask about it when he starts OT. I've heard of it, but I'm not sure how it is properly used.

Last year, he did well on the rides, but horrible in the lines. One day, we were waiting in line for pizza at DHS and he had a major meltdown while in the stroller. Screaming and carrying on -- it was a disaster and I was alone. I just wanted to cry. I thankfully had a few people around me who were sympathetic and tried to distract DS to help. One woman had her teenage daughter carry my food tray to a table so that I could focus on my son. Unfortunately, helpful people like that have been few and far between.

I didn't realize at the time that a GAC could have helped me, but thanks to this board and all of you kind parents, I now know better and I'm sure we will have a much better experience. :worship:
 
My DS did not like brushing either, except on the palm of his hands which he loved. The PT did deep pressure with large balls and beanbags which I thought would freek himout but he loved it (of course it helped that the PT really "got it", she was a teacher who gat frustrated with the educational system and the lack of support and became a PT).

You are going to love AKV, for a villa Kidani is great and quieter and the busses are not crowded when loading. There is also a back way to the pool by going down the second elevator north of the lobby to the garage and in the back gate (you will need your rrom key).

bookwormde
 
Did you wait in the regular line with the stroller or did they ask you to use the wheelchair line? I thought I read somewhere that strollers should use the wheelchair line.
Most of the lines are "Mainstreamed", which means that the regular line is accessible.
When you get the Guest Assistance Card/tag that allows you to use a stroller as a wheelchair, ask for a park map for guests with disabilities for each park.
They list the entrances for people using wheelchairs/ECVs/strollers as wheelchairs.
In most cases, the Guidemap does say to use the regular queue.
We were there just a month ago and DS (6) uses a large medical stroller. The rides that we had to use a special line for were - PP, IASWAA, Hall of Presidents (had to take an elevator up), Kilimanjaro Safaris and Jungle Cruise to name a few.

Most shows also had a separate line as we were seated in the back row with wheelchair seating. Only Monsters, Inc, COP and Tiki Birds were the only ones I can remember where the seats were not in the last row. This was really good for us though in that if the seats weren't filled DS could talk and it would not disrupt everyone around us.

Believe me some waits in the wheelchair line - most notably KS were extra long as they would bring in a whole truck for the accessible line.
I think you have mixed up American Adventure with Hall of Presidents. At the AA in Epcot, the entry to the building is on the ground floor, but the entrance to the theater is up a flight of stairs (also have some escalators). For guests with wheelchairs/ECVs/special needs, there is an elevator to get to the 2nd floor. Hall of Presidents is all on one floor.

Some of them, like Small World and Kilamanjaro Safari, you enter thru the regular line and follow that until you get to a wheelchair pull-out point because the regular boarding area is not accessible.
At Jungle Cruise, they may have you wait in the regular line or there is a handicapped area line - because of the number of people who are waiting there, the wait is sometimes longer than the regular line.
regarding shows - last year when we saw Nemo, w/c was in the very front and it is NOT a good place! DS could hardly see the stage. :sad2:
There are actually 3 wheelchair viewing areas at Nemo.
One is in the very front and I agree with you that it is difficult to see from since the stage is actually above you. There is also a small wheelchair viewing area in the middle of the theater. The majority of the wheelchair seats are in the rear.
As has already been stated many times they will route you to the regular standby line with a stroller as a wheelchair in many rides. What I do in cases like this is bring a blanket and place it over the stroller (if fastpass is unavailable). DD can feel as though she is "safe" and doesn't have to look at everyone around her (eventhough THEY usually look at HER-I wish I had a sign that said staring is rude sometimes!). Earplugs can work for the noise. For us, we know the rides so well now that we hit the rides that have the wheelchair accessible standy lines early when there is a shorter line and less crowds (not to mention she hasn't yet hit overstimulated point) and avoid those in afternoons or near mealtimes. However, the wheelchair alternate entrace rides can be longer waits but you're away from the crowd so the wait doesn't seem longer because you're not enduring your child reacting from the crowd. As was also stated the handicap seating in the various shows can either be in the front or the back. This is very important to note for sensory sensitive kids. We sat in the front in Lion King and it was just too much (lights, fog, movement)-wish I had thought ahead and realized we needed to be in the back as that show is difficult to quietly get up and leave if needed when you're in the front.
Just a heads up - because Lion King has stadium seating, the only seating you don't need to climb stairs for is in the front few rows. The other seating is above floor level and you can't get out except on the floor.
I've never done the handicap accessible seating for a parade as it's not needed however, they can become dicey when others squeeze in and bump dd's stroller.
We have used the handicapped accessible areas for a few parades and suggest checking it out ahead of time. The spots for some of the day parades are directly in the sun with no shade.
Those areas can also get very crowded and they tend to park the wheelchairs/strollers/ECVs practically touching each other across the front of the viewing area. Even if you have no one next to you to start with, as more guests come, they may end up parked right next to you and your family's spot will be behind the stroller/wheelchair.
If you find your own spots outside of the handicapped viewing areas, you will have the ability to keep a member of your party on each side of the stroller, which may work better for you.
The handicap accessible entrances are confusing in so many rides, so we just do the best we can and mainly use GAC for common areas and places that don't allow normal strollers at all such as all the very large buildings where a meltdown would make it very difficult to exit or in lines with a very long queue.
:goodvibes
The new Guidemaps are more helpful than the old booklets. The maps look very much like the 'regular' park maps, but have additional information, like where the handicapped entrance is for each attraction right by that attraction on the map.
 





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