Teen with Non-Verbal Learning Disorder (NLD)

[momstable]

I've seen a lot of information about small children with autistic spectrum disorders, but my child is no longer small. He's 13, complete with teen-tude.

He has Non-Verbal Learning Disorder (NLD), which is considered in the autistic spectrum. Like many other peoples disabilities, his is invisible in most circumstances. But he can not detect non-verbal communications -body language, facial expression, vocal tone - he has spacial issues, sensory issues, gross and fine motor issues. He may have out bursts or meltdowns, though those have thankfully become less common since we received a diagnosis a few years ago and did our homework on how to deal with him. He's incredibly bright, but does not fit in well with society. He can be quite reliable - or not, depending on how his day has gone.

We went to Disneyland last year in February, and it did not do well. I think I realize why it didn't and have tried to compensate better for this trip.

Things I have done to prepare for this trip:

Planned for down time every afternoon. Sleep in days every 3rd day. Planned for the most active time to be early in the morning when he is fresh, and a slower pace for afternoons, evenings. Lots of pool time.

I have a doctors note detailing his needs, not his diagnosis. I plan to get a just-in-case GAC. He does not like roller coasters or fast drops, so it is unlikely he will want to go on the most popular rides anyway. I've planned to get FP for the rest of the party. Anyone know if we can do a "baby swap" with a teen?

I've made very few ADRs, mostly for breakfasts, which while we may get tired of the repetitive menus, he will eat. (he's a very picky eater because of his sensory problems) Also had him help with the meal planning so he has "buy in" to the process.

I'm doing a grocery stop to get some of the things I know he will eat. Other things I'll purchase in advance and ship down.

For things he is not interested in, we've planned to split the party, one of us taking his younger brother, the other going and having some quiet time with the older.

I'm involving him in planning of the trip as much as possible, going over the plans, and the variations. Role playing and talking out the order of things (for him, everything has to be in words, or he doesn't process it) He wants a lot of time at Epcot, which is fine with the rest of us. And I'm making sure that's in the plan.

Bought shoes at the beginning of this month so they are well broken in for the trip.

Making sure to pack a night light, some familiar clothes, so it's not all new stuff, etc.

What else am I missing? Any other advice?

Thanks,

Mer

 

[momstable]

Oh and I tried to call WDW guest assistance, the guy I spoke to was completely non-helpful. Just said to ask at the parks when I get there. I was trying to do pre-planning. Arrrghh!!

 

[KPeveler]

you may be able to have something specified on the GAC that allows you to "baby-swap" a teen. I wouldnt allow a 13 yr old with or without any medical needs to stand alone.

also i dunno if you've been to many theme parks with him before, but you may want to explain to him how the line process works and look at some of the ride vehicles. since it can get loud in there sometimes, CMs only point to where you need to go or if they do say something they say it too quietly. either that or it is on a loud-speaker with a character saying it, and that may be a bit of a sensory over-load.

on live 365 if you search for "Disney" you can hear a lot of ride audio before you go. since he may not get things like sarcasm, you can listen to the entire show audio for (for example) the muppet movie first. that way if there is any confusion you can explain it, not in a theatre setting. it will still be new and special to see it!

also at all first aid stations (and there is one in every park) they have air conditioned little rooms with a cot, if the heat gets to him, or if he just needs a "quiet" space to calm down.

one ride that is very calm but may be difficult for him to understand is the jungle cruise. it is basically one very long pun/sarcastic joke. while it will still be fun for him to see, you may need to ride this one more than once for him to really get into it.

if my advice is off because i misunderstood your son's needs, sorry! i dont mean to offend or presume, but i thats just what i thought of off the top of my head...

 

[momstable]

if my advice is off because i misunderstood your son's needs, sorry! i dont mean to offend or presume, but i thats just what i thought of off the top of my head...

The advice is great! How do I find the audio thing? I've not heard of it before.

Many NLDers don't get sarcasm or puns. Mine does. As someone on one of the NLD boards says "When you've met one Nlder, you've met....one NLDer." Each person manifests the disorder in their own way, though have many things in common. We tell a lot of puns and do a lot of word play, so he's had a lot of exposure. But I do explain things to him often. Once something is explained, he enjoys the jokes and incorporates them into his personal lexicon. He's actually become quite adept at sarcasm ( the teen-tude thing). Now, apparently, he's working actively on irony. Or at least he says "isn't that ironic" a lot. I can only assume they recently covered that in school.

I don't plan on leaving him alone. Often, I will have him and his 9 year old Neurotypical brother do things together. They get along well. The 13 year old thinks he's in charge. The 9 year old adores his big brother, and is really the one with the direction sense, executive function and time sense. So they reinforce each other and compensate for one another. Elder son has the age and size to look and be "responsible". Younger son doesn't get lost, grasps concepts and Non verbal cues to navigate through dificulties ( or is cute enough to finagle assistance). But not at a place as big and unfamiliar as WDW. The local grocery store or a restaurant is one thing, WDW is quite another!

Neither wants to go on fast rides with heights and drops, but they's enjoy the themeing in the queues. DH and I would like to. A "child swap" type option would work well. Other places I've asked have answered "why don't you just have the teen watch the younger kid" without understanding why I wouldn't want to do that.

Thanks for the advice and the insights. I appreciate any and all assistance in this regard.

 

[KPeveler]

I PMed you the radio info. also, check out allearsnet.com. Deb has some great pictures of rides, lines, and what the ride vehicles look like. Also, where are you staying? she has many photo galleries of the resorts, so you can check those out too (it may not help your son's particular needs, but it is always fun to plan!)

Test Track is a ride you may want to check out, as it goes fast but does not have drops. You will be in an open car and belted in. you may be able to find a video of it (or any ride really) on youtube.com

 

[OneLittleSpark]

You can baby swap with anyone; it doesn't have to be a baby, that's just its name. I think Sue said a while back that she got baby swapped.

Other than that, you seem to have things fairly well covered!

 

[momstable]

I PMed you the radio info.

Thank you!!!

also, check out allearsnet.com. Deb has some great pictures of rides, lines, and what the ride vehicles look like. Also, where are you staying? she has many photo galleries of the resorts, so you can check those out too (it may not help your son's particular needs, but it is always fun to plan!)

Test Track is a ride you may want to check out,

Allears is bookmarked in my favorites (as is DIS boards). I also picked up both the official and the unofficial guides. Lots of wonderful pictures of the resorts. Hadn't thought to look at the rides. Thanks for the tip.

We will be the first two days (May 19&20) Visiting my MIL. That way DS13 gets some quieter time, gets to see grandma, gets to aclimate to the weather. May 21&22 (Mon&Tues) we are at the Beach Club. Then a night off site, to decompress and maybe visit with grandma somemore. Then 2 nights at the Yacht Club. Last night a hotel by the airport to make departure easier - sleep in, not fight traffic, not get lost, not miss our flight....

We didn't get a whole lot of choices on the trip. I won it in a sweepstakes. So we get 4 hotel nights. I did get to break it up as I wanted to. And when I specifically asked NOT to be at the Boardwalk, there was no problem (DS13 is afraid of clowns - which is a feature at the BW pool). But the dates were limited by the sweepstakes rules. Other choices were limited by our budget as this is a fairly last minute, unbudgeted, unplanned for trip. We were notified at the end of Feb. Leaving mid-May. Not a lot of lead time.

I'm hoping that Stormalong Bay will be a good experience for DS13. If not, the quiet pool will be. The rooms at both resorts look good. There is supposed to be a daybed as well as 2 Queens, so that he and his brother don't have to share. We have a rental car so that sensory issues with the buses won't come into play. I hope I've thought of everything that I can.

 

[KPeveler]

Passporter is also a great guide, and it has a lot of organization folders too. you can get them online, in most barnes & nobles or borders, or even on ebay!

sounds like you have things planned quite well

 

[bababear_50]

Thought I'd try and mention a few hints I've learned about NVL
My 21 yr old DS has a Non Verbal spatial learning disorder.
We took him and his two brothers to DW when he was 4 years old .
Keep in mind we knew only he was quiet and sensitive (no dx back then ).
Our first mistake was not familarizing him audio and visually with what to expect from the trip. I work with special needs kids now and realize the importance of early prep.

Gather as much written (pictures ) as you possibly can . organize each day into a scheduled planner for him/her to review.

Don't forget little things like hotel accomodations -maps room layout.
Airport and plane maps and schedules are also part of the trip plan.

Assign him a job on the trip--"trip photographer"responsible for carrying camera and shooting pictures,,this is a great option to give a child who at the last moment shy's away from going on a ride. Instant photo cameras although expensive are great.

Listen to those small clues --if he is hesitant about going into or onto a ride attraction accept it. We spent a scarey time searching behind the scenes of Haunted Mansion for my son. Disney sent a cm to help and she was great but when my son saw he costume (and full makeup)of this cm the search was on again.

We recouped on tom sawyer Island as he went into a full blown asthma
attack --after much cuddling --meds and crying we all made it through the day .

As a side note skip Universal's --"Jaws" now also.but that's another story.

My son and I have built a great relationship and he'll frequently say are you
M-mad H-happy
S-sad S-silly
A-angry E-excited
T-tired
F- frustrated
B-bored
etc
for those that don't understand this disorder ---he really can't tell so he"ll just ask.
I 've learned to express my emotions verbally --NVL kids think often they are
causing distress or are at fault of others unhappiness .

I must say he has developed a wonderful sense of humour(dry) and is currently in his third year (computer security analyst)school and co-op major bank.
We recently (2004 ) returned to DW and he had a wonderful --well planned trip and the only things he complained about was his mom needed to slow down and oh yah his feet were killing him.

 

[bababear_50]

I thought I'd mention also that NVL kids are usually extremely high IQ so they suffer more because they are keenly aware that they are different--just keep telling him that "Everyone is Different".

 

[JulieWent]

DS is 11 and has NLD. He loves the stimulation of the fast rides, though, so his perspective may not help you much. (The higher and faster and more stimulating, the better. That's how he deals with his sensory issues. Lucky me. I get to accompany him on all those rides! ) But, he HATES the three-D stuff, things that jump out at him and pinch him and the like. It's Tough to be a Bug at AK just makes him go bonkers. So, you may want to think about the 3D, taking in a fairly easy one like Mickey's Philharmagic in MK before trying the more intense ones.

We love the Epcot resort area. (We like BoardWalk, but we don't have the clown issue.) Stormalong Bay is awesome, and once again, because he loves the higher, faster, more intense stuff, DS loves the slide there. If your son doesn't like slides, there's still plenty of quiet time stuff there. It's a wonderful pool for relaxation.

Epcot has ALWAYS been our son's favorite. He likes to "collect" countries. (He likes to do the Kidcot Passport but not the mask activities. It allows him a little bit of interaction in each country but not a lot.) He can "collect" and learn at the same time and this appeals to his nature.

Animal Kingdom is probably the least "NLD friendly" park. I say this because the paths are always crowded. It is hard to find a quiet spot. We try to go during morning early entry and beat it out of there when the crowds build. (DS loves Kali River Rapids, Expedition Everest, Dinosaur, etc., but oh, man, it is hard to navigate that park.)

Some "down time" things we have done: We like to go miniature golfing at Winter Summer land near Blizzard Beach. (This has become a strange Christmas Day tradition for us. While everywhere else in "the World" is packed, we're the only ones there.) DS has made a list of resorts he'd like to explore. We pick one and go explore it thoroughly. (Sometimes this is fun. Sometimes I get bored. DS has his own agenda, though.)

My son likes to "learn" about everything before he does it. Have you gotten him a copy of Birnbaums' Disney for Kids or one of the other guide books? DS has devoured every guide book we've ever gotten him, to the point that he can tell US many things about Disney that we didn't know. (Also, I introduced DS to the teen board here at the DIS, but he quickly decided he liked the Universal Studios board better. Alas, the Hulk is more attractive to him than Space Mountain, poor me.)

It sounds like you have won the trip of a lifetime. It also sounds like you have planned for it well. Please PM me or let me know if you have any questions I can help with. (Also, see you back over on the NLD board?)

Julie

 

[wvdislover]

Don't forget earplugs!!! They are a necessity to anyone who has sensory issues and is sensitive to loud sounds. I always try to remember that what doesn't necessarily sound loud to me, may be extremely loud to my DD9. You also might want to check out the PassPorter's Special Needs Guide. It's got some really great ideas in it (you'll probably need to order it online--I never could find it in a store). Good luck--have a great time!

 

[jamesmommy]

Animal Kingdom is probably the least "NLD friendly" park. I say this because the paths are always crowded. It is hard to find a quiet spot. We try to go during morning early entry and beat it out of there when the crowds build. (DS loves Kali River Rapids, Expedition Everest, Dinosaur, etc., but oh, man, it is hard to navigate that park.)

In my experience, except in the busiest times of year, the paths around the Tree of Life where the animals are displayed are often very quiet and secluded. There is also a eating area near the bathrooms in Africa which is pretty quiet except during mealtimes. There may be some others, my ds4 doesn't like to leave Africa much once we get to AK, all his faves are there at this time (Kilimanjaro Safaris, the Pangini Forest, and the Train to Rafiki's Planet Watch) .

Have a wonderful trip,
Amie

 

[momstable]

We love the Epcot resort area. (We like BoardWalk, but we don't have the clown issue.) Stormalong Bay is awesome, and once again, because he loves the higher, faster, more intense stuff, DS loves the slide there. If your son doesn't like slides, there's still plenty of quiet time stuff there. It's a wonderful pool for relaxation.

Animal Kingdom is probably the least "NLD friendly" park. I say this because the paths are always crowded. It is hard to find a quiet spot. We try to go during morning early entry and beat it out of there when the crowds build. (DS loves Kali River Rapids, Expedition Everest, Dinosaur, etc., but oh, man, it is hard to navigate that park.)

Some "down time" things we have done: We like to go miniature golfing at Winter Summer land near Blizzard Beach.

My son likes to "learn" about everything before he does it. Have you gotten him a copy of Birnbaums' Disney for Kids or one of the other guide books? DS has devoured every guide book we've ever gotten him, to the point that he can tell US many things about Disney that we didn't know.

It sounds like you have won the trip of a lifetime. It also sounds like you have planned for it well. Please PM me or let me know if you have any questions I can help with. (Also, see you back over on the NLD board?)

Julie

Yes!!! Someone else who's been there. It's not really the same as autism, is it? <grin> And the issues as they get older are so different than the ones we faced when he was little. Middle school - a whole 'nother adventure (if yours isn't in it yet, let me know, and I'll see if I can help with what we faced).

DS13 is fine with 3D. We did Muppets at DCA and the rest of them did It's Tough to be a Bug (Mommy went to the port and cheese tasting while they played with the bugs. Mommy hates spiders. Mommy is NOT going to ITTBAB - no way, no how!!! Port and cheese - much better as an experience, believe me!) Probably Philermagic is the only one we will be going to anyway.

DS13 loves animals, so I imagine the half day we are planning at Animal Kingdom will be very animal intensive. Though DH and I will be riding EE. Now that I know I can "swap" the kids, even though they are older, it's all good. They may enjoy the theming, even if they don't want to ride. Or they can look at the animal exhibits together (with one of our cell phones) while DH and I ride. If they are together, it works well. I'll need to see the layout of the place once I get there.

We have both the Birnbaum book, and the Unofficial Guide. Plus I've been bookmarking websites. We've all studied menus, maps, descriptions. Compared and contrasted. Everyone gets to make choices of things they really want and really don't want to do. We have a general plan for each day. And the ability to NOT stick to the plan in certain circumstances. We have time built in for Fantasia Miniature golf ( a better theme choice for our family. Winter/Summer didn't interest any of us).

As Bababear suggested, I'm thinking of giving him a job. Since we will have at least one, maybe 2 digital cameras with us, photographer seems like a good choice.

For sensory issues, we've found that water works well for him. The weightlessness, the deadening of sound when his ears are underwater, all work. So we will swim daily. And he'll get a bath to soak, too, if he wants. He doesn't like the way earplugs feel, so that's not going to work for him. However, sounds don't seem to bother him much. No problems with music, or booms, or drums. He LIKES them. Same with lights flashing. Needs to sleep with sound and light going (that may be a problem for the rest of us, but we've navigated that problem before when we've been in hotels, so we should be okay.) But hates the feel of falling, or other rollar coaster type sensations. Likes spinning things, like the teacups, though. My younger son, who does have NLD, or any other disorder, feels the same way. But some of that may just be idolizing his older brother.

My biggest worries concern food. He hates everything. Lots of food issues, taste, feel, mixtures. It makes making ADRs difficult. Currently we have breakfast buffets every single day. I know that DH and I will get so tired of them. But it's the only way I know DS13 will eat. I am going to try to change 1 to lunch and another to dinner. The rest of our meals will be counter service, or in the room, or something outside the World. Some of that is price. Most of it is food issues. But we manage at home, so somehow, we will manage at WDW.

All in all, we are looking forward to the trip. I've prepped the best I can. I've planned as well as can be expected. Even DS13 is looking forward to at least parts of it. And is promising to TRY to enjoy most of it. The best thing about this trip is he is old enough to understand that he has issues, that he needs to be aware of when he is not happy, but that he is not the only member of the family. Sometimes he will do things for his little brother, even if he himself doesn't want to do it. I will attempt not to appeal to his altruism too often, but it's there if I need it. I'm also going to try to have one of his "want to do"s planned for after each of his brother's so that he has something to hold it all together for.

I guess I really need to write a trip pre-report and then a post report. That way we'll see if all or even any of this works out. Then ya'll can learn from my mistakes

Mer

 

[JulieWent]

Mer,

Sorry. I didn't read this till after I sent my PM. Forget the earplugs and have a GREAT time at the fire works! If I could go to every one I would.

And you're going to LOVE Expedition Everest. DS, DH, and I went on it once. Then we dumped DH, who turned green after the first ride, and went again. It was awesome. (Like I said, DS's way of coping with sensory stuff -- higher, faster, more intense. Ask sometime, and I'll tell you about our rollercoaster tour last summer.)

The food thing may work out better than you think. Disney goes out of its way to appeal to kids. The only restaurants in the World we've ever found that DS wouldn't eat at were in Epcot. (He still uses Marrakesh in Morocco as an example of place we've dragged him that were "dangerous.")

We will eagerly await your trip report. Have fun; don't be afraid to step back and say, "This isn't working right now; let's do something else." And if all else fails, dive in the pool.

And yep, we're in middle school now. It's been a fairly uneventful year (sixth grade) (she says holding her breath). If we can make it through next year, he'll move over to the school where I teach in 8th grade. Then I can really breathe more easily since my co-teacher will be his case manager. (I co-teach inclusion English to 9th grade students.) I know it's not everyone's experience, but getting out of elementary school was really a blessing for DS.

Have a great time. Let us know how it goes when you get back!

Julie

 

[momstable]

What's done is done, the flights are set, the hotel, the ADRs. Some things (like dining) are changeable, the others are not.

For those that might be interested, I've begun posting a pre-trip report on the Trip report thread. If I could figure out how to hyperlink it, I would.
It's titled "Dancing on Clouds, Floating on Air - WAIT!!! Don't change the song!!"

Thanks for all the input.

Mer

NOTE FROM SueM in MN
I added a link for you:
Click here for link to Dancing on Clouds, Floating on Air - WAIT!!! Don't change the song!

PS-I love your title.