What do I need to know/do?

[MapleGirl]

Hi Everyone,
I'm having a really hard time writing this post because I am so uneducated. Please be patient with me, this is all new.

My mom and step-dad take care of (adopted?) a ward of the state. "Ed" is his name. Ed just joined our family in June, so I haven't met him yet but I've heard so much! Ed is 28, but is more like a 5-year-old boy. He has FAS and is differently developed. (What is the correct wording for this?) He's like most little boys: lots of energy, very affectionate, short attention span. He's been without a family for so long (living in a state-provided group home that we don't think took very good care of him) so he's really happy to be part of our family. He keeps asking my mom when he'll meet his sister! (I live out of state and haven't been home in since Christmas.)

In January the whole family is going to WDW. DH and I have been many times and love it. This will be the first time my family will be there and I'm super excited about showing everyone around. We're going to do the big "We're going to Disney World!!!" reveal Christmas morning so Ed won't have to wait long. I'm planning on making him a countdown calendar for his room.

Will we need to do anything special or make special arrangements with Disney? Should we get a GAC card? I don't think he'll need any special assistance. He might try to affectionately mob a character or have a meltdown in the park. CM's are used to this with children, but will they be OK with a big guy? He might not understand why he has to wait in lines, so I'm not sure how to handle that. We will definitely need rooms next door to each other at the Pop Century. Will they be able to do that? What should I know? My mom has asked me to plan this trip and I want everything to be wonderful!

[momofrrr]

I don't know anything about FAS but I sure hope that you all have a wonderful trip.

[livndisney]

Originally Posted by MapleGirl

Hi Everyone,
I'm having a really hard time writing this post because I am so uneducated. Please be patient with me, this is all new.

My mom and step-dad take care of (adopted?) a ward of the state. "Ed" is his name. Ed just joined our family in June, so I haven't met him yet but I've heard so much! Ed is 28, but is more like a 5-year-old boy. He has FAS and is differently developed. (What is the correct wording for this?) He's like most little boys: lots of energy, very affectionate, short attention span. He's been without a family for so long (living in a state-provided group home that we don't think took very good care of him) so he's really happy to be part of our family. He keeps asking my mom when he'll meet his sister! (I live out of state and haven't been home in since Christmas.)

In January the whole family is going to WDW. DH and I have been many times and love it. This will be the first time my family will be there and I'm super excited about showing everyone around. We're going to do the big "We're going to Disney World!!!" reveal Christmas morning so Ed won't have to wait long. I'm planning on making him a countdown calendar for his room.

Will we need to do anything special or make special arrangements with Disney? Should we get a GAC card? I don't think he'll need any special assistance. He might try to affectionately mob a character or have a meltdown in the park. CM's are used to this with children, but will they be OK with a big guy? He might not understand why he has to wait in lines, so I'm not sure how to handle that. We will definitely need rooms next door to each other at the Pop Century. Will they be able to do that? What should I know? My mom has asked me to plan this trip and I want everything to be wonderful!

If he doesn't need special assistance, then a GAC would not be needed. You may want to have a word with the character greeter. January is usually a slow time so lines should not be bad. To limit time in lines, I would use a good touring plans and fast pass. When you make your room ressies, I would call special requests and explain that you need the rooms next door to each other. I hope your family has a great trip.

[bookwormde]

Just want to say thanks to your mom and step dad and you for opening your family to this young man. I would give things a try and see how it goes. If it turns out that he has sensory or social limitations that make the lines impractical you can always get a GAC at that point.

There are lots of threads about individuals with cognitive differences such as Autism spectrum and others that may be worth digging through.

WDW is a magical place for children of all ages so do some planning but most of all have fun.

bookwormde

[MomTo4+more]

You mentioned that in many ways he is like a 5 year old boy. If he gets separated from your family, will he be scared? Will he be able to communicate enough to get back? I think people would be surprised to see someone who looks like a grown man having the emotions a 5 year old child would if he got lost. I don't know much about DW b/c this will be my first trip (except for a short one as a nanny, but tat hardly counts). I am not sure if a GAC is what you need or not, but you may want a way to let CMs know he may need special assistance if he is lost.

[clanmcculloch]

Wow, your parents are wonderful people!!! I had to start with that.

First thing I would do is print or write something maybe index card sized with things like cell phone numbers and a very brief explaination of his level of understanding, just in case he gets separated from the rest of you. Laminating it would help keep if from getting ruined. If he'll wear a lanyard then put it in a holder on the lanyard, otherwise maybe pin it to him in some way. Teach him what the CMs look like and to show them the card if he gets separated from the group.

Discuss with your parents just what his needs are.

Will he be able to handle walking all day? Is he likely to run at a moment's notice? If yes to either of these, it might be worth renting a wheelchair for him. He doesn't have to ride in it all the time, but it will allow him kind of a buffer zone between him and everybody else when he's getting overloaded and it's easier to notice when he's about to bolt if he has to get up from the chair first.

A GAC may or may not be helpful, depending on his specific problems. Will he be able to handle all the theming in the queues/lines? If there are certain rides where the theming (like maybe ToT) would be upsetting then the GAC specifying alternate entrance might be helpful. Same accomodation is also helpful if he has trouble being in close proximity to lots of people for any extended period of time. This accomodation doesn't mean shorter waits (sometimes waits are actually longer), but it does allow for waits to be in a separate, quiet area, at least for rides that have this accomodation. Basically, understanding his areas of difficulty will enable your family to (a) plan the day better (b) decide if you feel a GAC might be helpful. Also remember that if you get a GAC, you don't always need to use it if he's doing just fine without it. You might find that a good touring plan is better for you than a GAC, but having a GAC could be thought of an an insurance policy for your family. There's no harm in going to Guest Relations before entering your first park to see what they suggest. You will need to be able to explain exactly what his need is though so be prepared to do that.

Planning will be your best friend.

I know you'll all have a magical trip.

[pudge the fish]

may I also add a note

take a picture of Him every day after he is dressed- before you head to the parks- This way if you do get seperated you can show a CM what he looks like and makes it easier than saying he's 28 and wearing a blue shirt- 300 guys can be 28 and wearing a blue shirt.

I know we do this for kids when we go ,but anyone who has developmental delays at ANY age can get lost- Even those of us w/o delays get lost & seperated from our family...

I agree with laminating info on a card too-

and I TOTALLY agree your parents are awesome!

[Libbyt]

What an awesome family you all are! You are going to see the world and "the world" through totally different eyes now! You probably won't have to "warn" the character handlers - they've encountered many individuals with different needs, so it won't be new to them.

Love the idea about putting ID in a lanyard pouch! Try to adjust your expectations of how your touring plans are going to go - you may need some added flexibility to deal with fatigue, sensory overload, stops for meals or bathroom breaks, etc. But also, as you would with a small child, let Ed know that he's part of a group, a family, and the group makes decisions together - he doesn't run the show 24/7!

Just a word about legal issues (my dd with disabilities turned 18 last year and we had to go through all this), and your parents may have already taken care of it all, but plans will need to be established for Ed's guardianship and care should something happen to your parents.

Good luck - I hope you have a wonderful trip with your new family member!

[Bete]

I use cards to hand out to different people if needed for my Alzheimer's mother. She can have outbursts; so, I write a few sentences describing her condition. I don't want to embarrass her or make a scene and these small cards can help to let others know you are doing your best. I definitely believe in doing pictures and IDs.

Also, I would try to use companion restrooms. Maybe, dad could go in together with him when needed. These restrooms are a little different from being handicap restrooms. They are huge and they are meant for a few people to be in them at the same time. My mom has a terrible time with public restrooms and these companion ones have really helped us. If you don't want to do it that way, then I would suggest someone waiting outside his door of the bathroom stall. Do not give him a chance to be alone.

Be careful at big events like Fantasmic. Everyone is rushing in grooves to get in. I would suggest here to hold hands; I mean it. I had a bad experience here with my grandson. It all worked out fine, but it was very bad for us because he got separated there going in.

Also, I feel it doesn't hurt to rehearse somewhat with him ahead of time on many levels; so, he's ready for it all. You have the vacation Disney DVD and Travel Channel that can help with shows about Disney World. If you've been many times show him pictures. Find out if he wants to do thrill rides or not. I would encourage him to do certain activities, but don't push him over the edge with it. I took my mom to the zoo as a try out before going to Disney World. We could see how she would react there and it prepared us better for Disney. Another type of amusement would be ideal for you.

[MapleGirl]

Thanks for your help and thoughts everyone! I've posted some responses below.

Originally Posted by MomTo4+more

You mentioned that in many ways he is like a 5 year old boy. If he gets separated from your family, will he be scared? Will he be able to communicate enough to get back? I think people would be surprised to see someone who looks like a grown man having the emotions a 5 year old child would if he got lost.

This is a really good point! Ed would not know what to do if he got lost and would happily go with a stranger is asked. My step-dad mentioned getting him one of those leashes that little kids wear around their wrists to make sure he doesn't take off or get lost. I'm not sure if this would embarrass him or not. Another idea is to get him a backpack and have the leash on that.

Originally Posted by momofrrr

I don't know anything about FAS but I sure hope that you all have a wonderful trip.

Thank you!

Originally Posted by livndisney

If he doesn't need special assistance, then a GAC would not be needed. You may want to have a word with the character greeter. January is usually a slow time so lines should not be bad. To limit time in lines, I would use a good touring plans and fast pass. When you make your room ressies, I would call special requests and explain that you need the rooms next door to each other. I hope your family has a great trip.

We will be sure to have a good (and flexible!) touring plan. We might try the first day without the GAC and see how things go or else just go talk to the GAC people and ask them what they think. I will also have my mom talk to Ed's support team from the state to see what they recommend.

Originally Posted by bookwormde

Just want to say thanks to your mom and step dad and you for opening your family to this young man. I would give things a try and see how it goes. If it turns out that he has sensory or social limitations that make the lines impractical you can always get a GAC at that point.

There are lots of threads about individuals with cognitive differences such as Autism spectrum and others that may be worth digging through.

WDW is a magical place for children of all ages so do some planning but most of all have fun.

bookwormde

Thank you. My parents are really wonderful people. This is a situation that is working out really well for everyone. The state pays my parents to take care of Ed as foster parents. It is really great for them to have a 'kid' in the house to take care of again as my brothers and sisters and I are all out of the house and starting families of our own. As my mom said, "We are two parents who aren't finished parenting yet!" I'm just so happy that Ed finally has a family and a home! My parents live on a small farm so Ed gets to help take care of all the animals and take the dogs for walks in the mountains (with my mom of course!). He has even started riding lessons and my mom got him his own pony!! He loves the animals and is on My parents are such super people!!!

Originally Posted by clanmcculloch

Wow, your parents are wonderful people!!! I had to start with that.

First thing I would do is print or write something maybe index card sized with things like cell phone numbers and a very brief explaination of his level of understanding, just in case he gets separated from the rest of you. Laminating it would help keep if from getting ruined. If he'll wear a lanyard then put it in a holder on the lanyard, otherwise maybe pin it to him in some way. Teach him what the CMs look like and to show them the card if he gets separated from the group.

Discuss with your parents just what his needs are.

Will he be able to handle walking all day? Is he likely to run at a moment's notice? If yes to either of these, it might be worth renting a wheelchair for him. He doesn't have to ride in it all the time, but it will allow him kind of a buffer zone between him and everybody else when he's getting overloaded and it's easier to notice when he's about to bolt if he has to get up from the chair first.

A GAC may or may not be helpful, depending on his specific problems. Will he be able to handle all the theming in the queues/lines? If there are certain rides where the theming (like maybe ToT) would be upsetting then the GAC specifying alternate entrance might be helpful. Same accomodation is also helpful if he has trouble being in close proximity to lots of people for any extended period of time. This accomodation doesn't mean shorter waits (sometimes waits are actually longer), but it does allow for waits to be in a separate, quiet area, at least for rides that have this accomodation. Basically, understanding his areas of difficulty will enable your family to (a) plan the day better (b) decide if you feel a GAC might be helpful. Also remember that if you get a GAC, you don't always need to use it if he's doing just fine without it. You might find that a good touring plan is better for you than a GAC, but having a GAC could be thought of an an insurance policy for your family. There's no harm in going to Guest Relations before entering your first park to see what they suggest. You will need to be able to explain exactly what his need is though so be prepared to do that.

Planning will be your best friend.

I know you'll all have a magical trip.

Thank you for all the great ideas!! I love the idea of a card for him to hold onto in case he gets separated. We will do that. I think having a quiet place to wait is a really good idea too. He is wicked active, so all the walking won't be a problem. I am concerned with him running off, so we are considering some kind of leash like little kids have. But again, I don't want to embarrass him!

Originally Posted by pudge the fish

may I also add a note

take a picture of Him every day after he is dressed- before you head to the parks- This way if you do get seperated you can show a CM what he looks like and makes it easier than saying he's 28 and wearing a blue shirt- 300 guys can be 28 and wearing a blue shirt.

I know we do this for kids when we go ,but anyone who has developmental delays at ANY age can get lost- Even those of us w/o delays get lost & seperated from our family...

I agree with laminating info on a card too-

and I TOTALLY agree your parents are awesome!

Taking his picture everyday is a great idea! Thank you.

Originally Posted by Libbyt

What an awesome family you all are! You are going to see the world and "the world" through totally different eyes now! You probably won't have to "warn" the character handlers - they've encountered many individuals with different needs, so it won't be new to them.

Love the idea about putting ID in a lanyard pouch! Try to adjust your expectations of how your touring plans are going to go - you may need some added flexibility to deal with fatigue, sensory overload, stops for meals or bathroom breaks, etc. But also, as you would with a small child, let Ed know that he's part of a group, a family, and the group makes decisions together - he doesn't run the show 24/7!

Just a word about legal issues (my dd with disabilities turned 18 last year and we had to go through all this), and your parents may have already taken care of it all, but plans will need to be established for Ed's guardianship and care should something happen to your parents.

Good luck - I hope you have a wonderful trip with your new family member!

I am super excited about seeing the World through his eyes. He has talked about always wanting to go to WDW, so I CAN'T WAIT for the reveal on Christmas morning. I'm going to tape record it and everything. I also can't wait to put together a little kit for him to take on the plane. I hear about all these fun things that parents do for their kids and now we get to do it for Ed!! DH and I always take breaks in the afternoon, so I will be suggesting that to my parents as well. Regarding the legal stuff.... Ed is already in the system and is on the other end. He was put in state custody after his grandmother passed away. His parents were never in the picture. He lived in a group home before he came to live with my family. If something were to happen to my family, he would go back into a state home.

Originally Posted by Bete

I use cards to hand out to different people if needed for my Alzheimer's mother. She can have outbursts; so, I write a few sentences describing her condition. I don't want to embarrass her or make a scene and these small cards can help to let others know you are doing your best. I definitely believe in doing pictures and IDs.

Also, I would try to use companion restrooms. Maybe, dad could go in together with him when needed. These restrooms are a little different from being handicap restrooms. They are huge and they are meant for a few people to be in them at the same time. My mom has a terrible time with public restrooms and these companion ones have really helped us. If you don't want to do it that way, then I would suggest someone waiting outside his door of the bathroom stall. Do not give him a chance to be alone.

Be careful at big events like Fantasmic. Everyone is rushing in grooves to get in. I would suggest here to hold hands; I mean it. I had a bad experience here with my grandson. It all worked out fine, but it was very bad for us because he got separated there going in.

Also, I feel it doesn't hurt to rehearse somewhat with him ahead of time on many levels; so, he's ready for it all. You have the vacation Disney DVD and Travel Channel that can help with shows about Disney World. If you've been many times show him pictures. Find out if he wants to do thrill rides or not. I would encourage him to do certain activities, but don't push him over the edge with it. I took my mom to the zoo as a try out before going to Disney World. We could see how she would react there and it prepared us better for Disney. Another type of amusement would be ideal for you.

I like the idea about the explanation cards. I think I'll make a few of those up. We will have to use the companion restrooms as he has a few problems in that area. I guess I better figure out where they are! In August Ed is going to the state fair, so that will be good practice for him. I think I'll send away for the planning DVD and we can all watch it sometime after Christmas so he can see where we are going. I was also thinking about lending him my collection of Disney movies so he, my mom and step-dad can watch them leading up to the trip. I thought that would be a fun way of getting into the Disney spirit!


Thank you again everyone for your help, ideas and support! I'm going to keep on hanging out here and listening to all your ideas and stories. You are all such wonderful people.

[retired and happy]

MapleGirl,

You sound like a pretty special person too. You seem to be oozing enthusiasm in making this work for Ed. Congratulations to you for your attitude.

We foster and adopt special needs kids and currently have three adopted (11, 12, 13) and will have a fiver next week. We go to WDW every Christmas/New Years and would not consider NOT taking our children. We often take relatives to help push 3-4 wheelchairs, so we at least do not have to worry about a runner. We also stay in our motorhome, so they are usually in familiar surroundings.

You have gotten some great suggestions here, so go and have a BLAST!