Concerned about 6yo son and our upcoming trip

[JUJU814]

My 6 yo son has early onset bipolar and adhd, along with a sensory processing disorder (waiting for exact test results on that one) He is a great little kid and on the outside can seem totally normal.....until....

he has a total and complete meltdown for no reason. You just look at him wrong and that's it. Add to the fact that even though he's just six, he looks about 8 or 9 in size, it makes for a most embarrassing situation when in public!

This is all very new and honestly, I'm not sure how to deal with it all yet. He's not on meds yet. I've been trying not to medicate.

My concern (downright worry!!!) is our upcoming trip to Disney World at the end of August. While I don't want to act for special treatment, I have heard of the special guest pass and wonder if I should try to get one "just in case". And, "just in case", how would having the special guest pass help him?

Because I suffer from anxiety myself (in case ya can't tell! HA) I have put a few things into place to try to make the trip easier and more enjoyable for all of us:

1) We are staying at the Grand Floridian mostly because it's on the monorail and thus a quick jaunt to and from Magic Kingdom and Epcot in comparison to the other resorts

2) GF buses are usually much closer to the park entrances than other resorts (those that are not on monorail)

3) We can watch the fireworks at night from either our room or resort and not be in the crowds

4) We are on the deluxe dining plan and will have fairly early breakfast each day. DS in particular NEEDS his breakfast early.

5) I'm trying to make it so we spend our mornings at a given park and either come back for lunch and swimming or right after lunch.

I'm worried about when we are at the parks or a character meal...what if he freaks out??? What if we are in line looking forward to a ride and he has a meltdown?

Can anyone give me more tips to make this trip enjoyable?

I'm afraid about trying to get a special guest pass as I have read on some sites that they had trouble getting them or had to parade their kid in front of the CM and some CMs aren't nice about giving them. Is this true? Would it even help us to begin with?

Julie

 

[bookwormde]

Hello and welcome, I am a parent of a DS9 Aspergers.

Do not worry about what other people think, just take care of your family and have fun.

It sounds like a lot of what you have planned so far is a good start. Part of the trick is not to try to do too much and do not get the family overly tired. You did not say how you son’s social skills are but sit down dinners can be somewhat challenging. We do them on occasion but only 1 or 2 per visit. We try to pick the less noisy and chaotic places and times to help with the sensory issues. At his first character meal our son spent the first 15 minutes at Garden grill under the table but the CMs are great and he finally “reemerged”, they seem to know when not to “push”.

If he has sensory or social issues with the lines then it is always good to have a GAC ready (especially later in the day). We only used it once but just knowing it is an option is helpful. I actually bought into DVC so we would have our own kitchen and quiet pools so we could meet his dietary limitations and allow him to decompress.

As for getting a GAC just explain to the guest relation CM what your child’s limitations and issues are with the lines and they should be able to add the correct notes to the GAC. If in the rare case that you get an inexperienced CM who is difficult to work with just ask for a supervisor. I just sat with my children on the bench outside guest relations at MK when my wife got the GAC so the CM could see them but they would not be “in the middle of things”

I hope this helps with WDW

If you do not mind I will offer a few suggestions in general. Since your child is 6 I will assume that the manifestation you are seeing have grown since he has begun school, this is very typical, and if he has any significant social skills deficits then you are probably on the way to getting a alphabet soup diagnosis, which is very common to get from clinicians who are not familiar with spectrum characteristics. I would suggest that you buy a copy of The Complete Guide to Aspergers by Tony Attwood C/2007 available on Amazon for about $25. Even if the current classification is correct it is very helpful with sensory issues and meltdowns and if not it will start you on the way to getting a correct diagnosis so you can get the you child the supports he needs for his neurovariation.

As you become more “educated” you will see that the meltdown never come out of nowhere and are mostly from high levels of anxiety from him trying to “deal with” the environment. It takes time to get tuned in so do not feel bad that you do not “get it” yet.

We are heading down in 12 days and doing the “flying” social skill/experience for the first time, and that has even veterans like me and my wife nervous. We are pretty sure it will be OK with our son having received intensive support for the last 2 years and having made such amazing progress but we still worry.

When you get enough posts feel free to PM me if you have any questions.

bookwormde

 

[Andyjo0930]

I know exactly how you feel. My son is almost 7 and is autistic. He is also big for his age, and looks perfectly normal. Our first trip was a nightmare. He had meltdowns waiting in lines, for the parades, and just in general. We now know what works and doesn't work for our son. I wish I knew about the GAC card on that first trip. I didn't find out about until our next trip last year. It really helped preventing a lot of meltdowns. It's hard for him to understand why he has to wait, and we do make him wait in lines under 15 minutes, but anything after that it's almost impossible for him. He will begin to figit, make noises, inappropriate comments, start jabbering about nothing. We then get looks from other parents, and the occasional comment about "controlling our son". I have realized that he does much better at Disney with the right planning. We get up early, head to the parks, try to take a break for him to swim in the afternoon (loves the water).... and he lets us know what he wants to ride, not the other way around. If he wants to go on Soarin three times in a row, which he did.... we just went with the flow. We also don't make him wait for an hour for a parade. My husband usually takes him walking around, in a shop, maybe for ice cream, while the rest of the family holds a spot for them. He then brings him back when the parade is about to start. He loves to watch them, just doesn't like to wait for them. Again, you might get a few comments from other parents, but it beats the alternative with a meltdown from your child. Also, if you have reservations, mention when you check in that your son has a disability. They can tell the handlers with the characters, and also I've found that I've had less wait times when I tell them. I hope you have a wonderful vacation.

 

[kaffinito]

My 6 yo son has early onset bipolar and adhd, along with a sensory processing disorder (waiting for exact test results on that one) He is a great little kid and on the outside can seem totally normal.....until....

he has a total and complete meltdown for no reason. You just look at him wrong and that's it. Add to the fact that even though he's just six, he looks about 8 or 9 in size, it makes for a most embarrassing situation when in public!

I'm worried about when we are at the parks or a character meal...what if he freaks out??? What if we are in line looking forward to a ride and he has a meltdown?

Can anyone give me more tips to make this trip enjoyable?

First off, you have a great plan in place! It really sounds as if you have things well under control. Now, relax. If your son has a meltdown, then he has a meltdown. What other people think is not your problem. If he has a meltdown, leave the line, try for a fastpass, and come back later on. Try to follow his lead, and go where he wants to go. Kids need that feeling of being in control as much as adults do, and after a few rides you can make suggestions without setting him off. (I hope - worked for me though). Also, watch videos on youtube with him for all of the rides you want to try so he can be prepared for them.

Do get a GAC, it might come in handy for your trip. And as far as an alphabet soup diagnoses, sometimes a kid has more than one disability. My oldest has ADHD, is bipolar, and is an Aspie too. We went through several years of testing before an accurate diagnoses was made when he was 13. It wasn't until he was properly medicated for both the ADHD and his depression that everyone noticed that he was autistic as well. Please think about medication for your son - I am against medication too, but until Ben was medicated, no one could do anything to help him.

Oh, and one final tip - if he has a special stuffie, bring it to the parks with you so it can act as his security blanket. Good luck and have a wonderful trip!

 

[OneLittleSpark]

I'm afraid I've not read all the replies you have here, so sorry if I repeat anything that has already been said.

As has already been suggested, I think it would be good for you to look into the Guest Assistance Card (GAC). The disABILITIES FAQ has a lot of very useful information on that. Among other provisions, you might want to consider getting a "stroller as wheelchair" stamp for the GAC (or sometimes it's a sticker that you put on the stroller). This will allow you to take a stroller through the lines, and give him a 'safe place' to sit. A lot of people who's kids have similar issues, find that this puts enough of a barrier between them and the outside world. Some people also drape a towel or light blanket across the stroller's canopy, to make a completely enclosed space.

If his sensory issues make him intolerant of loud noises, or constant background noise, you might want to consider taking foam earplugs for him. These will reduce the noise level, without completely blocking out his hearing. Another option would be sound reducing ear-protectors, like those used by hunters. It would be best to get him used to these things at home, before you go, so he has one less thing to 'get used to' while he's there.

Make sure to take things slowly, and be prepared to change your plans to suit him. It looks like you've already got this point in hand, and the plan of hitting the parks in the morning, then relaxing in the afternoon is one that has worked for a lot of people here. Just make sure that you're able to drop everything and get him back to the hotel if you need to. I know this one could be tricky, as there's always the temptation to try and push him for a little longer, to get more time in the park, but nobody is going to enjoy themselves if he is mid-meltdown.

It might help him if he is prepared for the trip in advance. Let him join in with the planning, show him the free planning DVD (you can order this on the WDW webpages), maybe show him some of the rides on YouTube (check the videos first, as not everything on there is what it is labeled as!). Some people find that a social story helps them to prepare their kids. Collect up pictures from travel brochures, magazines, the internet etc, and make a little book of your plans. It can be as detailed or as vague as you like, just make sure there is 'wiggle room' in the plans, so you can get back to the hotel if you need to.

Hope this helps, and that you guys have a great trip!

 

[SueM in MN]

Not time to write much, but you already got a lot of good info.

Post #6 of the disABILITIES FAQs thread has a large section about Guest Assistance Cards. As the others mentioned, a GAC can be helpful, but more helpful is planning. Even with a GAC, if you are in a busy park or a busy part of the park, you will not have a good experience. Knowing what is busy when makes a big difference = for example, Spaceship Earth in Epcot will have a long line early in the day. If you come back in the mid afternoon, it will be pretty much getting on as fast as you can walk.
Fastpass is also your best friend. You don't have to all go to an attraction. Send one member of your party to the attraction with your park passes and they can get Fastpasses for everyone in your party. If you have 2 cell phones, the person who went for Fastpasses can let you know if the standby (regular waiting) line is short. If it is, you may want to not get Fastpasses and do the attraction right away.

There are also some links in post #3 of the disABILITIES FAQs thread that have hints/trip reports from people who have visited WDW with a child with autism. Even though your child may not have that diagnosis, many of the issues will be the same and the hints should be helpful.

 

[busykate]

Not to push any one guide but I picked up a copy of passporter's open mouse and even though Dd who's 23 and has autism (and looks perfectly normal until she's on the ground screaming) and I are veterans the book had a ton of great information on rides, waiting areas etc. That and the GAC, which I look at as an insurance card, should make for a good trip. Don't worry about the looks other people give you , their lack of understanding is not your responsibility, giving your child a memorable time is. We'll be wandering around the parks with our lime green mickeys on our bags same time you are there so look out for the 5'4" dark haired 20 something acting oddly!

 

[SueM in MN]

Not to push any one guide but I picked up a copy of passporter's open mouse and even though Dd who's 23 and has autism (and looks perfectly normal until she's on the ground screaming) and I are veterans the book had a ton of great information on rides, waiting areas etc.

I was one of the peer reviewers for the first edition of that book and read every word of the draft I was given to review (I am a bit compulsive about things like that).
It is very good, but can be overwhelming at first because there is so much information. I suggest just paging thru it the first time you look at it to get an idea of how it is organized and what information is in there. Then, look at some specific area, and maybe use post-it notes or stick on flags for things you might want to look at again later. Don't do any underlining or highlighting until you've looked at it another time (you may end up underlining so much that nothing stands out any more).

 

[bzzymom]

DS is 11 and has anxiety disorder with obsessive manifistations and ADHD. I really think he has aspergers, especially when I read about other kids with it, and the way they describe their child is how I would describe my son, however, the psychologist we have been seeing says that DS is "too personable" to have aspergers Anyway, he has been to WDW several times, and had some melt downs there before I realized he wasn't like all the other kids. We have never had a GAC because I didn't know they were available. We haven't been back since his diagnosis because I have had a back injury at work 15 months ago and I am still in the healing stages, not ready to travel.

DS's isn't bothered by characers or big crowds. As far as sounds go, he covers his ears at the lights motor action stunt show. He doesn't like the sound of motorcycles and loud engines, but he likes to see the show. His biggest issue is the wait time length. If the posted time is 20 minutes, he expects to get on in exactly 20 minutes. He will complain if it is shorter too, so I tell him it is just some disney magic getting us on earlier, but he doesn't buy into that. I take him gameboy DS and he plays in in a long line and at TS restaurants. This keeps him distracted somewhat, but he always has to keep track of the time.

Once we were on Test Track (one of his favorite rides) and it shut down for about 5 minutes while we were on it, and a small meltdown started, but we were able to keep him under control. He was scared mostly.

He likes to go when the lines are shorter. We make use of early entry and extra magic hours at night. DS especially liked the early entry at typhoon lagoon because he felt as if there was hardly anyone else there. The worst meltdown he had was at TL at the shark reef. He really wanted to swim with the sharks, however once he got in, he didn't like the water temperature (too cold) and he felt like he could taste the salt water. He kept stopping and and you aren't supposed to stop, and then he seemed like he was in a panic. I was beside him and I was helpless because I wasn't allowed stop with him,
so a concerned lifeguard helped him to the exit. It was scary. DS did calm down afterwards and he said he was never going to swim in an ocean.


We have had some other meltdowns, but, we sit and rest or we go back to the room. DS absolutely loves WDW. We have been able to get him calmed down by just stopping and sitting somewhere, sometimes for 5 minutes, sometimes 15 minutes. We do make it clear that if he doesn't calm down, we will have to leave the park for the rest of the day. We haven't had to leave the park, thank goodness.

DS's biggest issue now is that he hasn't been there in 2 years. He feels like he has to have a minimum of once a year trip to WDW because that is what he was used too.

 

[casaazul]

My son also early onset Bipolar and ADHD at age 7.

We have done Disneyland and Disneyworld and he is now 13 and we are all still a family!! LOL! A great book for you is The Bipolar Child by Papalos. www.bipolarchild.com

Here's my advice:

- Make sure you tell him what you are doing and when you will be doing it. NO sudden changes!!
- Warn him of any possible changes long before and closer to the event... "honey, the restaurant may not have pepperoni pizza, can you have cheese?"
- Let him in on the plans. He may not care about xyz, but really wants to do abc!
- Waiting in line is hard. Not sure if he is into Gameboy, but that has helped our son deal with waiting.
- Plan for plenty of quiet, down time. Tom Sawyers Island, a bench with popcorn, an airconditioned show, swimming pool at the hotel.
- When (or if, lol) the meltdown happens, don't even think (very hard I know) about what other's are thinking. You will soon get so used to the "look" and ignore it. Deal with your son as calmly as you can, and move as you can away from public areas. You will never get used to the meltdowns and the looks from others, but you will get used to predicting and possibly stopping the meltdowns.
- If flying, make sure you bring a letter from the doctor about his illness, just in case he freaks out at the airport, especially during security checks. Prep him for the fact he will have to take his shoes off!

You can do this, but don't plan on doing the "typical" WDW plan you read about online and in books. Plan,plan, plan!!! And you will have some wonderful memories between the meltdowns!!

 

[kaffinito]

My son also early onset Bipolar and ADHD at age 7.

We have done Disneyland and Disneyworld and he is now 13 and we are all still a family!! LOL! A great book for you is The Bipolar Child by Papalos. www.bipolarchild.com

Here's my advice:

- Make sure you tell him what you are doing and when you will be doing it. NO sudden changes!!
- Warn him of any possible changes long before and closer to the event... "honey, the restaurant may not have pepperoni pizza, can you have cheese?"
- Let him in on the plans. He may not care about xyz, but really wants to do abc!
- Waiting in line is hard. Not sure if he is into Gameboy, but that has helped our son deal with waiting.
- Plan for plenty of quiet, down time. Tom Sawyers Island, a bench with popcorn, an airconditioned show, swimming pool at the hotel.
- When (or if, lol) the meltdown happens, don't even think (very hard I know) about what other's are thinking. You will soon get so used to the "look" and ignore it. Deal with your son as calmly as you can, and move as you can away from public areas. You will never get used to the meltdowns and the looks from others, but you will get used to predicting and possibly stopping the meltdowns.
- If flying, make sure you bring a letter from the doctor about his illness, just in case he freaks out at the airport, especially during security checks. Prep him for the fact he will have to take his shoes off!

You can do this, but don't plan on doing the "typical" WDW plan you read about online and in books. Plan,plan, plan!!! And you will have some wonderful memories between the meltdowns!!

Truly excellent advice!!!!

 

[hematite153]

DS is 11 and has anxiety disorder with obsessive manifistations and ADHD. I really think he has aspergers, especially when I read about other kids with it, and the way they describe their child is how I would describe my son, however, the psychologist we have been seeing says that DS is "too personable" to have aspergers

Responding to this rather than the OP

Have you asked about autism in general? Asperger's is really part of the Autism spectrum, but, it has some specific requirements and traits. The spectrum of disorders that fall within an Autism Spectrum Disorder is vast and can include people who exhibit personable and loving/attached behaviour. (Many people think that if a child is bright they can only have Asperger's, but, I've worked with 4 different students who were extremely intellectually gifted and had ASD.)

 

[mechurchlady]

Do not worry about other people's reactions to a meltdown. Unless it is so severe as to cause damage to people or things the do not worry about what they think. If you have a more comfortable setting in a restaurant then tell the greeter. Some kids are better in a booth away from people or you might want near the door.

If a meltdown occurs and people are grumbling then have one person say that the kid has special needs as that usually shuts people up right then and there. Most people see a meltdown or rambunctious kid and remember that couple with the kid that was throwing things, running around and using the booth seat back as a raceway. Many people will see a kid having a meltdown and remember the little brats turned loose in the grocery store to wreak havoc.

As for looking at the kid and it going into a meltdown maybe the kid was melting down slowly from something else and your quick glance set the kid off. I have had days where something happens then half an hour later I snap at someone that seems innocent and not worthy of a mean remark. Do not worry that he looks like a 9 year old having a meltdown. Adults with special needs and some who do not will on occasion have a melt down.

Big hugs and prayers. Have fun and do not worry too much.

 

[scojos]

i have 2 SEN kids, ds 10 has adhd and ds8 has HFASD.

we have printed of loads of t shirts to make our life easier, the originals can be found on the creative dis-igns section of the dis

etc...
there are loads, if that helps.
the problem with invisible disabilities is just that, they are invisible.
i hope you have a lovely holiday
tracy

 

[JUJU814]

Thank you all sooooo much!!! You have been so awesome and given awesome advice.

I just got a call tonight that we meet with the psychologist tomorrow to go over all of his other neuro/psych test results. I'm anxious to hear what they say. I also will meet with the psychiatrist before the trip and will get a letter from her, although I know I probably don't need it to get a GAP (if we decide to)

I have so many ADRs and I really think I need to cancel some and do the counter service. I have a 1900 park fare character bkfst scheduled and I am not sure he'll go for that. I'm still making my decision whether or not to cancel that one.

Thanks so much or all your help!

Julie

 

[mechurchlady]

Do the breakfast and if he starts gets unstable then leave but make sure dad gets food to go. I am pretty sure they would box your breakfast for you if you had to leave early. Kids can surprise you and be better than you ever thought possible.

Also try practice runs at your local restaurant. Get him used to restaurants like Denny's. He will learn that good behavior means yummy food in theory. I have read here how parents with special needs kids will take them to local parks, malls and stores to get them used to lines, crowds and rides.