Help for a family with a severely handicapped child

[Doogan]

My sister taught full-time at a school for severely mentally handicapped children. She really has a gift for working with these kids. One of her kids, Larry, was being neglected and was going to be put into a state run home. These "homes" are no place for kids. Being the loving person she is, she took Larry into her home and has been his foster mom ever since.

Larry is now 22 (or so) but functions at the level of a 6-12 month old. He cannot walk, talk, feed himself, or go to bathroom and there is no chance he ever will. He has seizures which are getting worse. In fact, we don't expect him to live a whole lot longer.

The reason, I'm writing all this is because one of the happiest places in the world for Larry's very limited senses is Disney World. Although he cannot see very well, we think he enjoys all the bright colors and he loves all the noise. He just laughed constantly the one time she was able to take him.

Since the last time she went, Larry's health as deteriorated to the point where it would be a lot harder to feed him in the parks and to change his diaper, etc. Also, she now has a toddler and infant of her own.

So, after all that introduction my question is; Does anybody know of any services or organizations that could potentially help out in a situation like this? I thought of Make a Wish and similar organizations, but they are all limited to kids under 18. Also, I don't know that they could really provide any "help" for her. I think she would almost need a extra person help. Even with her husband, I think it would tough to manage. This is a bit out of my realm of expertise, so I'd be grateful for any suggestions.

Thanks in advance.

 

[SueM in MN]

The majority of organizations are for children under the age of 18, as you mentioned.
She might try some other local fund-raising sources - places like her church, Lions Club, Rotary, places like that. The church might not be able to come up with any funds, but there may be someone willing to go along and help.

 

[OneLittleSpark]

Might you, or another member of her family, or a friend be able to go along to help her? It sounds like an extra pair of hands could make all the difference. Even if the extra person didn't help out with Larry that much, they could help look after her little ones and take turns pushing his wheelchair or their stroller when needed.

For changing, she can use the First Aid centres, which all have full sized beds which are available for all Guests to use. As far as feeding is concerned, does he have his own food, a restricted diet, special requirements (e.g. needing food pureed for him), or does he just need assistance with the physical act of eating? All of these can be accommodated, and we can point you in the right direction as needed.

As she's been before, I assume she knows about things like companion restrooms and ride boarding, but just in case, there is plenty of information on this and more in the FAQ section.

I hope this helps a bit!

 

[mechurchlady]

Try Make A Wish and other children's groups that help disabled children. While they wont be able to grant a wish they might know of places that can help. They might have had old people asking for help and thus found resources.

As for diaper changing there are companion bathrooms where several people can go in as well as cots and a place to change him at the nurse's stations. Table service restaurants will puree food as well. Chin up and have faith. Big hugs and good luck.

 

[Doogan]

Might you, or another member of her family, or a friend be able to go along to help her? It sounds like an extra pair of hands could make all the difference. Even if the extra person didn't help out with Larry that much, they could help look after her little ones and take turns pushing his wheelchair or their stroller when needed.

I'm considering that, but I thought there are probably other people in the same situation. It seems like there might be some service out there that would cater to families that need a caretaker while they are on vacation or something. We might be able to work something out in this situation, but perhaps other families are not so fortunate.

 

[packerbeth]

In 2001, a group called the Sunshine Foundation financed our entire trip to Disney World because of our special needs son. If you do an internet search you can find out more about it. I don't know if they have an age limit, and you do have to apply, but it doesn't go by financial need, I don't think, just the needs of the child. Good luck.

 

[MarieS]

At home does he have any nurses or respite workers that come to the home to help? My oldest son is on a medicaid waiver program in our state which provides this type of help. Our respite worker came with us on the boys Make a Wish trip. MAW included her in our group and she was paid for so many hours a day through the waiver program. It made all the difference having her on the trip to help.

 

[mechurchlady]

There was a thread about perfume on rides that includes odours, piped in scents, and smoke. It has a couple lists of rides and attractions that have odours such as naturally occuring mustyness, piped in scents and smoke from fireworks and shows.

http://www.disboards.com/showthread.php?t=1720871

 

[SueM in MN]

As for diaper changing there are companion bathrooms where several people can go in as well as cots and a place to change him at the nurse's stations. Table service restaurants will puree food as well. Chin up and have faith. Big hugs and good luck.

Unless he can stand for diaper changes, the Companion Restrooms won't work.
They do have enough room for a wheelchair and someone to help, but some don't have a changing table. The changing tables in the ones that do are only about 36 inches long. They are also counter height (about 34-36 inches high).

 

[terri01p]

In 2001, a group called the Sunshine Foundation financed our entire trip to Disney World because of our special needs son. If you do an internet search you can find out more about it. I don't know if they have an age limit, and you do have to apply, but it doesn't go by financial need, I don't think, just the needs of the child. Good luck.

Sunshine Foundation only goes to the age of 18 as well.