Ds Not Excited

[DisMom1981]

I need reassurance. DS 4 (ASD) is not excited about Disney which I'm sure is normal as he doesn't know what to expect and is so young- but of course I read into it that it is his disability and he is not going to enjoy anything and it will all just be a disaster. He is "high functioning" but is set in his ways, get stuck, nervous to try to things and rarely does, socially awkward (says inappropriate/strange things/personal space issues/makes noises) I've been prepping him for months- talking, describing, pictures, YouTube.... Today we made a paper chain countdown and wrote something we wanted to do on each link. His only request is the Tomorrowland Speedway and Test Track because they have cars......his obsession. He is afraid of The Dumbo ride- what will he actually like if he thinks Dumbo will be scary? He can be a screamer and is going through a defiant stage (No!!) when he doesn't want to do something and I'm worried about the frequency/ embarrassment of all of
this- I feel petty and guilty for even worrying about that. I know I need to go with the flow but I'm worried I made a mistake planning this trip thinking we can be a "normal" family.

Thanks in advance for (hopefully) telling me to calm down and it will be ok and I'm not alone and how you make it work.

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[Bete]

If there are any amusement parks in your area I would try them before you venture out to Disney World. You may be able to get him over some of his fears that way. Then, he may open up more for Disney. If no amusement parks are close then try a zoo. This will serve to let you know any triggers that could occur.

You may want to try some type of reward system for when he accomplishes a ride at Disney that is challenging for him. If he likes stickers that's one of the easiest rewards. Candy works as a reward.

I wouldn't press for a long day and I would take a nap mid-day. I would alternate shows and meals with rides. Don't try to do more than two rides in a row; unless, he wants more. Let him go on the same ride over and over again if that is what he enjoys.

There is something called a GAC which is a guest assistance pass. This could help you. There is another thread, here that explains this tool.

 

[lucigo]

Are you staying on site? My son is also high functioning. He is now 10. At your son's age, we really had to pay attention to his favorite things about Disney and make sure that he had his time too. Those were...exploring the polished rocks in the gift shop, sitting in and studying the letters at Pop Century, and riding the bus. He brought a travel sized magna doodle, and his stroller was his safe zone. We brought ear protection for the fireworks, which turned out also to help him with rides, they made him feel safer. We would go on the same ride 3-4 times just so he could see that it really was safe and actually go from terror to enjoyment. (Nemo is his favorite movie but it took 4x on the ride before he could let his guard down). Our boy isn't a runner, but he would try to bolt at the end of rides because he was scared.

We also learned that letting him video tape rides and fireworks helped him to enjoy them more. I think having the camera worked as a buffer and a distraction, and he would watch the fireworks through the camera viewer and be more comfortable. For us it was fascinating to see what types of things he took videos of.

After our first visit we made him a shutterfly book with his favorite things about Disney. He shared it at school and with his therapists. It helped him to be able to talk about the positive part of his experience.

 

[babyberger]

Take a deep breath and know that you and DS will be okay My DS is now 10, also on high functioning on the spectrum and living in south Florida means a LOT of Disney trips. Each family's experiences are different for sure, but I am happy to let you know that you are absolutely not alone and share some of the things I have learned over the years.

1. Get a GAC (guest assistance card) from guest services. You may never need it, but it can be a life saver. We did not know about it until the past few years and it made a HUGE difference for us. If your son feel comfortable in his stroller and is a "safe place" for him, I would ask for a stamp on the GAC that allows the stroller as a wheelchair so you can bring it into lines with you.

2. Bring one or two of his favorite items in your bag or backpack. Again something that is comforting to him. Also preferably something to keep him entertained while waiting, whether it is for a ride, the bus, food, etc.

3. Calm the senses! We always brought headphones and sunglasses! I would download his favorite music onto my phone, Disney movie soundtracks, etc, and let him use that when we could see he was getting over stimulated. I have also found the the sun is a big stressor for my DS, I am actually very sensitive to bright light as well, so having sunglasses was a must, and still is. (I actually bring sunglasses with us to the dentist for DS so that when the stupid overhead light is shining he is not bothered by it.)

4. Bring his favorite drinks and/or snacks. Even though you can easily find what you need, sometime having something familiar is key! I would try to freeze (if possible) drink boxes which make great slushies as the day goes on.

5. And I can't stress this enough, be flexible and take breaks! Sometimes a ride on the People Mover or Train, are enough to have some down time and get away from the crowds. We also have no problem leaving to take a nap, relax, swim, ride on the monorail or even change parks. Also, the first aid stations have quiet rooms, if you just need to get out of the heat and have some absolute quiet for a bit.

I know it seems like a lot to bring, but it honestly makes the day so much easier. We also did just what you are doing by talking about the trip, watching videos, looking at brochures and maps.

I will let you know that in the past year, I have been able to give up bringing in a backpack filled with "supplies". I now carry a small cross body bag with my phone, credit card, room key, suntan lotion stick, etc. It is nice to "be free"

Oh and one last thought, never be afraid to say the word "Autism"! The cast members are generally amazing! If you are having a problem anywhere, just let the cast member know that your son has autism and you need help or any assistance they can provide.

Disney is truly amazing when it comes to special needs, and I think once your son is there the excitement will grow and he will have a great time

Good luck!

 

[DisMom1981]

Thank you so much. I was so nervous to post that but I am glad I did. I knew I would get really helpful advice and although it is overwhelming to think about bringing it all I can completely see everything you all mentioned helping us tremendously and being worth the effort. I love the earphones - did not think of that- because he loves music so much. Maybe I will get an iPod just to have his music on and then I don't have to worry about my phone losing battery or just being destroyed. I'm so nervous about the GAC with all of the controversy, but I guess all we can do is try and use it if we need it- hopefully we won't. We've never tried sunglasses but maybe if he picks them out he will wear them too. Where do you get earplugs? Are there special ones for kids? Sorry for rambling- thank you so so much.

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[BenbowInn]

I know with our son (just turned 5) when we talk about things he gets it built up in his head and is always disappointed so we've found it best to not tell him much before doing anything.

Our son has no disabilities but I wanted to chime in anyways as a family member has a 5 year old boy with autism and is the same as my son in that he gets disappointed in how things are versus what he builds it up to be in his head.

It took us until about a year ago until we realized surprising our DS with anything is better than talking about it. For instance we went to a Disney on ice when he was crazy about Toy Story and he was excited all week and then during he while show he was cranky and wanted to leave. Just a month later we went to the circus and didn't say anything ahead of time and he had a blast, since then we say absolutely nothing until we get to our destination and he now enjoys things whereas before he would be upset, disappointed and all around miserable. Seriously even something as simple as going to the park would end up with him in tears as he always liked the idea of things more than actually doing it. Now we tell him no plans ahead of time and he's so much happier with things.

My cousin, who's son is the autistic and the same way, says things are much better now that she's taken my advice and just goes with it instead of telling her son anything ahead of time.

Sorry for the log reply, just wanted to put it out there that it may not always be best to keep building something up, sometimes we need to just jump in and let our kids form their own opinion. If he doesn't seem interested then I wouldn't push it and just wait...he will have a great time! Of course you know your child best

 

[Mom2six]

I know with our son (just turned 5) when we talk about things he gets it built up in his head and is always disappointed so we've found it best to not tell him much before doing anything.

Our son has no disabilities but I wanted to chime in anyways as a family member has a 5 year old boy with autism and is the same as my son in that he gets disappointed in how things are versus what he builds it up to be in his head.

I know that worked well for some of my older kids, but my DS5 (autism and high anxiety levels) needs to know all about it before going and needs to be told how fun it will be. When we do it, his anxiety and fear will rule out any ability to have impulsive fun. The more we can explain exactly what will happen (videos work the best for him for anything) and how it will be, the quicker he can relax to enjoy it - though sometimes he does not relax the whole time, but still wants to do it.

 

[DisMom1981]

I know that worked well for some of my older kids, but my DS5 (autism and high anxiety levels) needs to know all about it before going and needs to be told how fun it will be. When we do it, his anxiety and fear will rule out any ability to have impulsive fun. The more we can explain exactly what will happen (videos work the best for him for anything) and how it will be, the quicker he can relax to enjoy it - though sometimes he does not relax the whole time, but still wants to do it.

I was going to say the same thing. I have to teach my son how to enjoy things and it doesn't always work. We could go through the whole trip and what he will enjoy most is finding telephone poles and power lines in the area..........I think that is part of my fear/sadness is that he doesn't see it the way all of the other kids do. He won't get excited to hear he is going to DW- he doesn't care. When he gets excited- difficult and very ATYPICAL behaviors ensue.

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[Mom2six]

I need reassurance. DS 4 (ASD) is not excited about Disney which I'm sure is normal as he doesn't know what to expect and is so young- but of course I read into it that it is his disability and he is not going to enjoy anything and it will all just be a disaster. He is "high functioning" but is set in his ways, get stuck, nervous to try to things and rarely does, socially awkward (says inappropriate/strange things/personal space issues/makes noises) I've been prepping him for months- talking, describing, pictures, YouTube.... Today we made a paper chain countdown and wrote something we wanted to do on each link. His only request is the Tomorrowland Speedway and Test Track because they have cars......his obsession. He is afraid of The Dumbo ride- what will he actually like if he thinks Dumbo will be scary? He can be a screamer and is going through a defiant stage (No!!) when he doesn't want to do something and I'm worried about the frequency/ embarrassment of all of
this- I feel petty and guilty for even worrying about that. I know I need to go with the flow but I'm worried I made a mistake planning this trip thinking we can be a "normal" family.

Thanks in advance for (hopefully) telling me to calm down and it will be ok and I'm not alone and how you make it work.

Sent from my iPhone using DISBoards

The first time my son went to Disney World was in September last year when he was 4. He has moderate/severe autism and I did not think he would like it. We went for the first time in January of that year with my DD6 and DD16 because my husband had a conference there. Well, my son kept looking at the pictures of my DDs with his favorite characters and I could tell he was a little jealous. So we booked the trip for September 2012. It was a surprise for the other 5 kids, but I told him all about it for 8 months. (He didn't talk, so he couldn't tell them. Now he talks a little, but he still wouldn't be able to give away a secret). I showed him videos, pictures, and explained it all in detail right down to showing him the beds in the room where he would sleep. He did not seem at all excited. I was really worried. But he LOVED it. I figured out later, over this year, that it was too abstract for him to be excited yet. He was EXCITED when he believed we were actually going now (when we arrived and he could see it.) He doesn't get excited to do something that far down the line.

The first time there he did not ride on things like Dumbo...too scary for him. But he loved the characters, especially Mickey and Minnie Mouse. He even liked meeting the Princesses, despite the fact that he will not use anything that has a Princess on it at home. He is really into movies so seeing the characters was like meeting his best friends.

It's a Small World was his favorite ride. He was scared to death when we first got on it, stayed tense the whole time, but smiled a little. Later, we went on it again and he was scared until we were on the boat. He sat a bit tense, but smiled a lot and he POINTED at a few of the dolls and looked to see if I saw it too! That actually made me cry a little. After that, he loves the ride.

The first trip to WDW he did not go on many rides - It's a Small World, Peter Pan, the Carousel, Tomorrowland People mover, The Kilimanjaro Safari ride, Finding Nemo, and The Donald Duck ride at Mexico. It was great time though and I was so happy to take him. He went on a lot more rides the second time we went!

I went prepared to let him have a good time in his way. He did.

 

[dumbox2]

just wanted to add one more piece of advice from all the wonderful suggestions you have gotten. lower your expectations on what a disney vacation is supposed to look like. we went to disneyland when my son was 4 (he has SPD, anxiety and ADHD). our first indoor ride was small world and he screamed the whole way through it. couldnt get him to even try another indoor ride after that. if the ride was outdoors he was mostly fine. both dh and i were frustrated that we were in disney and not getting to do anything. then we took a few steps back and realized that just being in the disney atmosphere was better than not being there. so instead we stopped trying rides and just enjoyed people watching and running around and stuff like that. good luck and hope the vacation goes well!

 

[DisMom1981]

I know with our son (just turned 5) when we talk about things he gets it built up in his head and is always disappointed so we've found it best to not tell him much before doing anything.

Our son has no disabilities but I wanted to chime in anyways as a family member has a 5 year old boy with autism and is the same as my son in that he gets disappointed in how things are versus what he builds it up to be in his head.

It took us until about a year ago until we realized surprising our DS with anything is better than talking about it. For instance we went to a Disney on ice when he was crazy about Toy Story and he was excited all week and then during he while show he was cranky and wanted to leave. Just a month later we went to the circus and didn't say anything ahead of time and he had a blast, since then we say absolutely nothing until we get to our destination and he now enjoys things whereas before he would be upset, disappointed and all around miserable. Seriously even something as simple as going to the park would end up with him in tears as he always liked the idea of things more than actually doing it. Now we tell him no plans ahead of time and he's so much happier with things.

My cousin, who's son is the autistic and the same way, says things are much better now that she's taken my advice and just goes with it instead of telling her son anything ahead of time.

Sorry for the log reply, just wanted to put it out there that it may not always be best to keep building something up, sometimes we need to just jump in and let our kids form their own opinion. If he doesn't seem interested then I wouldn't push it and just wait...he will have a great time! Of course you know your child best

I do worry more than I should and sometimes don't give DS enough credit- but it is because if the extremes we have experienced with him and also depend on the kind of day he's having. It's a tough call. Thanks for the post!

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[Mom2six]

I was going to say the same thing. I have to teach my son how to enjoy things and it doesn't always work. We could go through the whole trip and what he will enjoy most is finding telephone poles and power lines in the area..........I think that is part of my fear/sadness is that he doesn't see it the way all of the other kids do. He won't get excited to hear he is going to DW- he doesn't care. When he gets excited- difficult and very ATYPICAL behaviors ensue.

Sent from my iPhone using DISBoards

Looking for telephone poles sounds like something my son would do. I was pretty much prepared to stand around at the oddest places so he could look at whatever caught his fancy. My DS has a tendency to want to mimic the poses of particular characters he likes - and he can do this for hours. It worked out okay though, and he can't wait to go back. He often enjoys things in a different way than other people, but he stills enjoys them. So as long as everyone else gets time to enjoy things their way, I don't have a problem with his "odd" fun! The stroller helped a lot because he felt very safe in it, especially when playing with my iphone (if he didn't like what was happening around him) or watching a video on the ipod.

 

[Mom2six]

I do worry more than I should and sometimes don't give DS enough credit- but it is because if the extremes we have experienced with him and also depend on the kind of day he's having. It's a tough call. Thanks for the post!

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I worry a lot too. I think most parents of a child with autism worry a lot - I think it is because we have to think of every little detail, be prepared with all sorts of contingency plans, know what might trigger a meltdown, and be able to prep our kids ahead of time. All on top of the normal planning that goes into everything from a trip to the grocery store to a 2 week vacation.

My son did have a few meltdowns at the parks. Once when he was startled by a combination of noises at HS (Indiana Jones I think made an explosive sound at the same time as Jedi Training started). He had to leave right away, so I took him back to the room while the others stayed. Now I know to keep him away from the stage where Jedi Training Academy takes place - my husband now records my daughter's participation in it for me to watch after. I also know that I need to know what causes loud sounds so I can tell him right away what the noise is.

So, my point is that he might have a few meltdowns, and those struggles will be hard. Sometimes they may be really awful. Don't worry about being embarrassed because I have seen even "normal" kids losing control at DW! We in general stayed at the park with him about 3 hours at a time and then took him for a rest back to the room. Sometimes he could cope longer at the park in his stroller etc. It all depended on his mood and ability at the time. The second trip was a little better but when they have sensory input problems, it builds up.

 

[DisMom1981]

just wanted to add one more piece of advice from all the wonderful suggestions you have gotten. lower your expectations on what a disney vacation is supposed to look like. we went to disneyland when my son was 4 (he has SPD, anxiety and ADHD). our first indoor ride was small world and he screamed the whole way through it. couldnt get him to even try another indoor ride after that. if the ride was outdoors he was mostly fine. both dh and i were frustrated that we were in disney and not getting to do anything. then we took a few steps back and realized that just being in the disney atmosphere was better than not being there. so instead we stopped trying rides and just enjoyed people watching and running around and stuff like that. good luck and hope the vacation goes well!

Thanks. I definitely keep saying our motto is really really low expectations so that anything we do will seem like the best vacation ever and hopefully outweigh anything else.

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[DisMom1981]

The first time my son went to Disney World was in September last year when he was 4. He has moderate/severe autism and I did not think he would like it. We went for the first time in January of that year with my DD6 and DD16 because my husband had a conference there. Well, my son kept looking at the pictures of my DDs with his favorite characters and I could tell he was a little jealous. So we booked the trip for September 2012. It was a surprise for the other 5 kids, but I told him all about it for 8 months. (He didn't talk, so he couldn't tell them. Now he talks a little, but he still wouldn't be able to give away a secret). I showed him videos, pictures, and explained it all in detail right down to showing him the beds in the room where he would sleep. He did not seem at all excited. I was really worried. But he LOVED it. I figured out later, over this year, that it was too abstract for him to be excited yet. He was EXCITED when he believed we were actually going now (when we arrived and he could see it.) He doesn't get excited to do something that far down the line.

The first time there he did not ride on things like Dumbo...too scary for him. But he loved the characters, especially Mickey and Minnie Mouse. He even liked meeting the Princesses, despite the fact that he will not use anything that has a Princess on it at home. He is really into movies so seeing the characters was like meeting his best friends.

It's a Small World was his favorite ride. He was scared to death when we first got on it, stayed tense the whole time, but smiled a little. Later, we went on it again and he was scared until we were on the boat. He sat a bit tense, but smiled a lot and he POINTED at a few of the dolls and looked to see if I saw it too! That actually made me cry a little. After that, he loves the ride.

The first trip to WDW he did not go on many rides - It's a Small World, Peter Pan, the Carousel, Tomorrowland People mover, The Kilimanjaro Safari ride, Finding Nemo, and The Donald Duck ride at Mexico. It was great time though and I was so happy to take him. He went on a lot more rides the second time we went!

I went prepared to let him have a good time in his way. He did.

You have me with tears in my eyes. I know those moments like when your son pointed in SW ride. Thank you.

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[DisMom1981]

Looking for telephone poles sounds like something my son would do. I was pretty much prepared to stand around at the oddest places so he could look at whatever caught his fancy. My DS has a tendency to want to mimic the poses of particular characters he likes - and he can do this for hours. It worked out okay though, and he can't wait to go back. He often enjoys things in a different way than other people, but he stills enjoys them. So as long as everyone else gets time to enjoy things their way, I don't have a problem with his "odd" fun! The stroller helped a lot because he felt very safe in it, especially when playing with my iphone (if he didn't like what was happening around him) or watching a video on the ipod.

My son mimics people and sounds all of the time. Something we are working so hard to get past. He never mimics anything positive- it's like he knows what is strange or uncomfortable about other people an he copies it to a tee.

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[lucigo]

http://www.amazon.com/3M-Peltor-Junior-Earmuff-Blue/dp/B0015UX2EK/ref=sr_1_1?ie=UTF8&qid=1375211082&sr=8-1&keywords=peltor+kids

Here are the kids sized headphones we use.

 

[lucigo]

Thank you so much. I was so nervous to post that but I am glad I did. I knew I would get really helpful advice and although it is overwhelming to think about bringing it all I can completely see everything you all mentioned helping us tremendously and being worth the effort. I love the earphones - did not think of that- because he loves music so much. Maybe I will get an iPod just to have his music on and then I don't have to worry about my phone losing battery or just being destroyed. I'm so nervous about the GAC with all of the controversy, but I guess all we can do is try and use it if we need it- hopefully we won't. We've never tried sunglasses but maybe if he picks them out he will wear them too. Where do you get earplugs? Are there special ones for kids? Sorry for rambling- thank you so so much.

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An iPod is a great idea. He could use that also to take his own pictures/videos.

When you get your GAC ask for the stroller as a wheelchair option. That way he can ride in his safe little cave all the way up to the ride and then get right back in afterwards. As I mentioned my son would bolt after a ride, getting the stroller option meant he would only bolt so far as his ride. We got a stroller with a very large canopy so he could put it all the way down over him, essentially creating his own little hideaway.

 

[DisMom1981]

An iPod is a great idea. He could use that also to take his own pictures/videos.

When you get your GAC ask for the stroller as a wheelchair option. That way he can ride in his safe little cave all the way up to the ride and then get right back in afterwards. As I mentioned my son would bolt after a ride, getting the stroller option meant he would only bolt so far as his ride. We got a stroller with a very large canopy so he could put it all the way down over him, essentially creating his own little hideaway.

We have a sit and stand. I'm nervous because he only has the little bench in that stroller. I was thinking of renting a double city mini so he would then have a comfy seat. I don't even know if they would let us use either of those strollers as wheelchairs since its for DD too. My biggest home was to make what we have work and if he has the iPod maybe the sit and stand will be fine.

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[DisMom1981]

http://www.amazon.com/3M-Peltor-Junior-Earmuff-Blue/dp/B0015UX2EK/ref=sr_1_1?ie=UTF8&qid=1375211082&sr=8-1&keywords=peltor+kids

Here are the kids sized headphones we use.

Thank you! I ordered something very similar! Such a GREAT idea!

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