Sensory Disorder-Am I making a mistake?

[3girlsfun]

My ODD has Sensory Disorder, where she is overwhelmed by too many senses at a time.

We are very aware of her surroundings, routines, etc. while at home and in our day to day happenings.

Anytime we do anything "special" their are normally negative consequences for her, as well as the family. Most of the time the consequences are those we can deal with fairly easily now that we have learned how too. For example, she may melt down, so we take her to a calm place. For certain meltdowns I apply pressure to her body by hugging her tightly, the list goes on and on.

When she has a major overload it comes through in her sleep. She will sleep walk, have night terrors, night mares, she gets to the point where she has no clue what she is doing. The worst cases have resulted in her passing out when she gets so overloaded.

Last night the sleep walking and night terrors happened. The sensory overload was caused by spending the night at her grandmother's. (You know how you work really hard, but those around you don't "get it" so they do nothing you ask them to do in regards to your child? This is one of those cases!) Anyway, the episode got me thinking....

Am I making a huge mistake by taking my DD to WDW?

I know she will enjoy it, she loves Disney everything. I know she will have sensory overload, however, I have done more research than I thought possible to try to make our days go smoothly, and to develop a routine. I have TS meals so that we can get out of the heat and light (the light is a big one for her!), really I have plans in place to try to do the best I can.

I guess I am just wondering, how are your children doing who have sensory issues, in the parks and with week long, in your face WDW?

 

[kirstenb1]

To answer your question, "am I making a mistake?", I don't think so.

We just returned from a trip to WDW. Our trip last year was a disaster, but this one went well.

Our younger dd is nearly 5, and has high functioning autism. This year, dh and I split up the kids. I mostly stuck with our 5 yr old. We were in the parks for 4 days. On 2 of the days, she asked to go back to our room by 11:30. It was kind of an expensive use of our tickets those days!

But we just went back, she watched tv for a while, went for a walk, then hit the pool.

As you already know, this trip will be dictated by how she's feeling. We took bottled water in our backpacks, to help keep her cool. Before we went, we showed her the different rides on You tube. We brought her stroller, as a buffer from the crowds. Good luck with your trip!!

 

[3girlsfun]

We will definitely be letting her dictate things, we are even taking my grandmother for backup!

What was the difference in this trip and last years?

 

[poohnpigletCA]

We have done one trip to DW and many trips to Disneyland with our DD who just turned 6. We find a stroller with a sun canopy very helpful as it gives her a quite place to relax. In a small bag we pack her: sunglasses, ear plugs on a string, spray mister, Ziploc bag with a wet washcloth in it, crunchy and chewy non-melting snacks.

We found tour guide Mike's to be so helpful in choosing quite least crowded parks. When I made our ADR's I asked the very helpful CM who was helping me where quite areas in each park are. I then marked it on my maps and I knew I had a quite area in each park.

Always grab a parade show schedule when entering each park. You do not want to be walking somewhere and get stuck by parade craziness.

We did a sit down meal each day to keep her cool and comfortable. We had an amazing trip.

 

[Maggie'sMom]

I don't think it will be a mistake as long as you are aware of the potential difficulties and have a plan in mind to deal with them. And it sounds like you do. Will this be an easy, relaxing vacation? Of course not, but it can be a fun one.

You've probably already thought of all of these things, but I would recommend ear plugs to cut down on sound and sunglasses (for everyone not just your DD) to cut down on light. Take plenty of water and snacks to keep everyone hydrated and not hungry. That helps DD and I both avoid meltdowns.

You don't mention how old your DD is. Would she ride in a stroller? Some of the outside rental companies have special needs strollers that accomodate larger children. You can cover the stroller to cut down on light, and it might make her feel safer being somewhat confined. There was another post recently on this board about using a stroller with a SPD child.

I really think you've got the right ideas to make this trip successful: taking breaks, letting your DD set the pace, TS meals to get out of the sun and heat, and so on. Go with an upbeat attitude and low expectations for what you will be able to see and do, and you will do fine.

 

[kirstenb1]

We will definitely be letting her dictate things, we are even taking my grandmother for backup!

What was the difference in this trip and last years?

There were so many differences.

1. This was so stupid, but we didn't "stay where we played". We bought tickets for Universal and Sea World, but we are DVC members, so our resort was several miles away. When Zoe was "done for the day" we all had to be done. This was really unfair to our older daughter. Because we were trying to accomodate both kids, we pushed Zoe to stay longer than we should have.

2. She has sleep issues. This time we packed her MP3 player and headphones. DH loaded movies onto it. So she got to fall to sleep watching her Scooby Doo, and other favorites, with no outside noises.

3. We bought a fan mister, and brought in bottled water. The heat doesn't bother the rest of us, and I never noticed it bothered Zoe so much, until that trip last year.

4. It's really hard to get her to eat breakfast, so I just brought ziplocs full of Fruit Loops cereal into the park.

5. Because the kids are so different, dh and I split up this time, each taking a kid. I think he and I both need a vacation after this trip!! But it made for a great time for the kids, at least.

 

[Maggie'sMom]

4. It's really hard to get her to eat breakfast, so I just brought ziplocs full of Fruit Loops cereal into the park.

This reminded me. It's very helpful to pack snacks you know your child likes for in the room as well as at the park. DD is an extremely picky eater due to both her sensory issues and her bipolar disorder. I was having difficulty getting her to eat much of anything from the restaurants. Luckily I had granola bars, pistachios (which she loved at the time), and other healthier snack type food to fill in when she just wouldn't eat a meal.

 

[3girlsfun]

Thank you so much for all the comments! We will have our double stroller with us, and our DD will definitely be using it. She is 5, sorry if I didn't mention it earlier! We have the Baby Jogger, City Mini (like the one you see advertised to rent while at Disney) so, the sunshade is wonderful!

I have definitely found TGM's website great for planning our days, and that was money well spent I would say.

Thank you everyone for the advice, and also for making me feel like it is going to go ok at the parks!

 

[SmallWorld71]

My nephew (11) has a sensory disorder and DD7, although not severe enough to need a diagnosis, is a sensory seeker and can become overloaded a lot more quickly than my other kids. I know I'm repeating PP's but things that have helped us:
1) A good touring plan - avoiding chaos is so much easier than having to deal with it
2) Asking the kids what they want to see and telling them when we will be working that in; although we are flexible, the kids are much more relaxed if they know what is coming next
3) Snacks in the bag - DD in particular seems to get hungry at the most inconvenient times
4) The stroller - DD is also a thumb sucker and we would bring her lovey; she is tall for her age, too but I didn't care what people thought of my big girl sitting in the stroller sucking her thumb; it saved us all
5) Seeking out water and other play areas; it's amazing what a little down time can do
6) the swimming pools - we would take long breaks where the kids could just swim
7) Willingness to split up if needed - if someone gets tired and cranky then they go back to the resort with one of the adults for some swim or TV time while another adult stays with the kids who want to keep going
8) Bringing familiar toys from home
9) Some down time in the room - even though you may be thinking "We didn't travel all this way so we could spend time watching Phineas and Ferb on TV", doing familiar activities can help the kids deal with the unfamiliar
10) Not worrying about diet - at home DD is a very good eater and is willing to try new things and even eats her veggies, on vacation though she only wants foods in her comfort zone such as mac&cheese, cereal etc... We don't push it.

 

[Escape2Disney]

My daughter has high functioning autism, and we've gone to DLR nearly every year since she was five. It's gotten progressively easier over the years (she's a teen now). I agree with all of the suggestions above, and would add the following:

1. Camelbacks are great for providing a steady supply of water. I let her carry it around for a few weeks before we went and started a new "rule" that she had to drink a certain amount before eating. It really conditioned her to stay hydrated.

2. Mapping out the day also helped quite a bit. We learned not to be too ride-specific in the plan, but we did include what areas we'd visit during what times. I made a color coded spreadsheet for her the first few times which seemed to lower her anxiety.

3. We brought her comforter from home and replaced the one in the hotel room. That was a HUGE deal for her!

4. When you make ADRs, talk to the CM on the phone about your daughter's over stimulation issues. They'll pass that info on to the restuarants and help to seat you at tables that are away from the major activity of the restaurant. They were even able to do this at character meals! The handlers were informed as well and would only come one at a time and give her a chance to warm up to them before they moved on.

5. KNOW WHERE first aid is and make a stop there when you enter a park. They have cots where she can decompress if needed. They've always been very accomodating! A few times we accidentally ended up in the parade chaos, and being able to detour to first aid saved us from a major meltdown!

I hope you have a wonderful trip!

 

[SueM in MN]

You don't mention how old your DD is. Would she ride in a stroller? Some of the outside rental companies have special needs strollers that accomodate larger children. You can cover the stroller to cut down on light, and it might make her feel safer being somewhat confined. There was another post recently on this board about using a stroller with a SPD child.

I saw that the OP already has her own stroller, but just wanted to mention for anyone else that post #2 of the disABILITIES FAQs thread has information about renting special needs strollers (scroll down past the wheelchair and ECV information to find it).
You can find the disABILITIES FAQs thread near the top of this board or follow the link in my signature to get there.

Post #6 of that thread has information about Guest Assistance Cards, including information about using a stroller as a wheelchair so it can be brought into lines and attractions where strollers are usually not allowed.

Thank you so much for all the comments! We will have our double stroller with us, and our DD will definitely be using it. She is 5, sorry if I didn't mention it earlier! We have the Baby Jogger, City Mini (like the one you see advertised to rent while at Disney) so, the sunshade is wonderful!

I have definitely found TGM's website great for planning our days, and that was money well spent I would say.

Thank you everyone for the advice, and also for making me feel like it is going to go ok at the parks!

Glad you found TOurGuide Mike.
Many people have found his advice to be very helpful and reported they did not have to wait more than 10 minutes for anything using his advice.

My daughter has high functioning autism, and we've gone to DLR nearly every year since she was five. It's gotten progressively easier over the years (she's a teen now). I agree with all of the suggestions above, and would add the following:

1. Camelbacks are great for providing a steady supply of water. I let her carry it around for a few weeks before we went and started a new "rule" that she had to drink a certain amount before eating. It really conditioned her to stay hydrated.

2. Mapping out the day also helped quite a bit. We learned not to be too ride-specific in the plan, but we did include what areas we'd visit during what times. I made a color coded spreadsheet for her the first few times which seemed to lower her anxiety.

3. We brought her comforter from home and replaced the one in the hotel room. That was a HUGE deal for her!

4. When you make ADRs, talk to the CM on the phone about your daughter's over stimulation issues. They'll pass that info on to the restuarants and help to seat you at tables that are away from the major activity of the restaurant. They were even able to do this at character meals! The handlers were informed as well and would only come one at a time and give her a chance to warm up to them before they moved on.

5. KNOW WHERE first aid is and make a stop there when you enter a park. They have cots where she can decompress if needed. They've always been very accomodating! A few times we accidentally ended up in the parade chaos, and being able to detour to first aid saved us from a major meltdown!

I hope you have a wonderful trip!

For the ADRs, mention the things you need when you check in, even if you did mention it over the phone when making the ADRs. That way, there won;t be any misunderstandings or ommissions.

I'm glad you mentioned First Aid. I was going to suggest it for the same reasons you did. The staff are very nice and First Aid is cool, dimly lit and usually quiet.

 

[gamomof2]

Is your daughter in Occupational Therapy for her SID? If so then the therapist may have some redirecting exercises you can use. Our daughter (now 15) was in OT for 3 years for SID. Also getting the book The Out of Sync Child might help provide some techniques. Tactile restimulation can do alot. While tight hugs are nice they're stimulation in themselves. If you have a while until your trip you might ask your pediatrician for a referral for an OT evaluation. If they can help with weekly sessions then it's amazing what they can accomplish. Our youngest was 8 before we attempted our first WDW trip. Part was the sensory problem and part was her medical health. Her SID is neuro though not behavioral.

She now is about to be a Sophmore in high school, plays flute sitting in the middle of a marching band each week and can walk barefoot in the grass, deal with commercials on TV and wear tags in clothes. It's possible for SID to get better.

 

[bookwormde]

It sounds like you have the basics (and more) down as to how to accommodate for your child's sensory issues. It is certainly not a mistake to take her to WDW, but is an important part of helping her to self adapt. As long as you keep a slow pace and listen to your daughter and do not push you will be amazed that with low anxiety and the magic of WDW the heightened levels of sensory input that she is willing to tolerate to be a part of the WDW experience. If you can find a good discount you might want to consider an upgrade to a moderate or ever WL or rent a DVC studio since they are much more sensory friendly.
bookwormde

 

[Lisa0620]

I agree with so many of the other comments. Our son was 7 and did so much better than I expected. We also found essential:

Tour Guide Mike - have a Fast Pass Volunteer to keep her out of rope drop stampedes

Earplugs - I expected to need them for things like Lights, Motor, Action and instead we used them all over the place, even on things like the Jungle Cruise! (All volume knobs are set at "11" at Disney.)

Midday breaks were essential! We restrict TV at home, so being able to watch tv without the timer was a treat and was a huge incentive to leave the park without a meltdown.

Same thing with the pool. Try to stay in a resort with a quiet pool. We usually only shared the pool with one family and we were there in June!

We only did fireworks that we could walk home from - for us that was Illuminations

Schedule less towards the end of the week. Our last day in the parks he would have been more than happy to stay in the room. He didn't meltdown, but I could see that he had stopped having fun and was just trying to make it through. We missed some things at MK that I "saved" for the last day because we decided to cut it short. If I could do that over I would have the last day be a greatest hits day with lots of resort time.

I think you'll be fine because you obviously know your daughter's needs well and have reasonable expectations. Our experience was that DS did better at Disney than he does at home, but he was still the same kid, ykwim? One thing I had to let go of myself, was that our "must do's" were going to be different than most people's. Many people take 3 and 4 year olds on Big Thunder Mtn RR, but I knew our 7 year old couldn't handle it. Things that most guidebooks call "filler" like Carousel of Progress were our son's favorites! You don't have to have the typical Disney experience to have a great experience. Good luck, I hope you have a wonderful week!

 

[ireland_nicole]

I agree w/ what everyone else has posted. I put all the things for DD (mp3 player, sunglasses, fidget, snack, earplugs, etc.) in a hip pack and she wears them around and takes what she needs out.

Definitely plan on a significantly slower pace. Many days we literally did 2 hours in the park; but using tgm and gac when necessary she did well. DD's fave park is actually AK. There's lots of quieter places, but she still gets the input she craves at fotl(with ear protectors), safari and ee (although she only rides w/ her eyes closed). She really loves triceratop spin and primevil whirl (finally got tall enough this year).

for years I have given each kid a map with our proposed route mapped out. now that they're a tiny bit older they each have a job (when we're together, we also used the divide and conquer concept successfully). one uses their map to tell us where we're going next (the tour guide) and one tells us the route (navigator). they're much happier when busy but into their own thing kwim?

we love the BJ strollers, they are sooooooo awesome; yours will be great for the parks. DD is music focused and calmed so we let her use her mp3 player everywhere she needed it; even during meals or on rides occasionally, DS is calmed by his games on DS, so he used that; and I had two much calmer and less overloaded kiddos.

Basically, yes, Disney is possible; but it will require huge forethought, planning, and contingency planning- but hey, for our kiddos, so does a trip to a local park or anywhere else, right?

And like a pp said, be prepared to need a vacation for yourself after LOL. Since you have GM, I would highly recommend at least one date night. This trip we didn't have one, but on the previous trips we took at least 2; one for a nice meal out, and one to hit all the rides in the parks the kids couldn't or wouldn't do but we really wanted to try.

 

[3girlsfun]

Thank you so much for all the tips!!!

Again, everyone and the info. on here is helpful.

DD has been through OT, and goes back occasionally when needed. (She went back when I had DD #2).

I hadn't thought of taking the DS with us into the parks, but, that is an awesome choice. I am highly expecting AK to be my DD's favorite park. I am also expecting Resort hopping in the evenings to be one of her favorite things to do.

I hadn't thought of earplugs....what kind do you recommend? The ones with the strings that attach them, or the individual ones? I bought my DD a "purse" she can carry with her in the parks, so she will be able to hold several of her needed items.

I can't say enough about Baby Jogger strollers. They are a little slice of heaven. The sunshade in itself is reason enough to buy/rent that stroller! It makes a huge difference in my ODD's life. (Even though I bought it for my younger two DD's.)

Our upcoming trips to Disney (As long as this one goes well) will be at moderates and above I believe, just for the sensory issues. We actually really want to try a villa. This trip though, it is Pop, and we are going from there. We needed the two rooms, and a great food court, so that is where we ended up.

I just want everyone to know that this thread gave me the wisdom to know that this trip is not a mistake, and I booked our airfare today!

 

[SmallWorld71]

Congrats on booking the airfare!

We often stay value and DD and DNephew love the values. A couple things about them that may help:

1) The food court - We love that they have so much selection, but it can get crazy at peak mealtimes, particularly breakfast. You can get the food to go, just ask for it in a to go container. We usually eat breakfast in our room to avoid starting the day out too crazy. Either one of the adults runs over in the morning or we eat some of the cereal that we bring with us. You can also get your other meals to go if it is too crazy.

2) Transportation - I missed whether or not you are using Disney transportation. If you are, one thing we did that helped was have DD wait for the bus in her stroller if the line had a lot of people. Even though you need to fold it up when getting on the bus, I just waited until the bus was in sight. That way we avoid the constantly trying to get her to stop swinging on the chains etc...

3) The gift shop - We found this to be crazy in the evening. I would look at the souvenirs mid-day.

4) The arcade - This also becomes kind of crazy in the evening after everyone is back from the parks. If the arcade is important, you will probably want to check it out at a quieter time of day. Arcades are overstimulating as it is, never mind adding in crowds. It is also crazy if it is raining.

Honestly, I don't find it any harder to stay at values that mods (although POR was so quiet!) as long as I take precautions to avoid the crowds.

 

[kirstenb1]

OP, we have Sennheiser headphones. I think they're noise-cancelling type. We plug them into dd's MP3 player, but they could just be used to channel out noise, alone.

Also, I missed whether you're flying or driving. If flying, I'd encourage you to rent a car. Your children are young, and it looks like you'd have at least a double stroller, then a single one too. It's a lot to hold onto children and strollers while the WDW busses are moving. Also, we like having a car, in case Zoe is starting to meltdown, so we can make a hasty retreat.

 

[SueM in MN]

Hope you have a great time.

 

[Sunbeamblue2002]

My son has SID and it has become better over time. He's 10 now and can deal with fireworks noise and parade's or at least deal with them. Earplugs in them selves can be somewhat of an issue with SID so get good nice soft ones not the cheep ones if your not going to get the head phones. Also sun is still an issue for my DS who is 10 so remember the hat just for that reason. Can't tell you how many time I've shelled out 10 for a hat because we forgot in a rush.

The best Disney advice I can give you is skip haunted manison. I had never been to disney and never thought to look up a video of it. He freeked when the thing went downhill backwards. Totaly lost it. He to this day says he's never getting on that again. Its been 5 yrs since we went to.

Also I don't know how old your child is but shoes with light on them helped him on darker rides where he could just tap them briefly when a little too scared in the darker rides. Again that was 5 yrs ago.

Good luck and have a great time. Just remember to remember your on vacation and take it slow.