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Old 13-10-2013, 19:32   #1
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Disabled child

I would love to hear from others that cruise and have a cAdult disabled child that they still care for
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Old 14-10-2013, 05:43   #2
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Re: Disabled child

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I would love to hear from others that cruise and have a cAdult disabled child that they still care for
I have had 57 views but No one can respond to my post..... We want to cruise with our csy 44 but can not take our son w disabilities..... Please if you are out there I would love to hear from you.... It is a lonely place when you are standing with no one....hope to hear
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Old 14-10-2013, 06:09   #3
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Re: Disabled child

Give it some time it may take awhile. It's only been 10 hours between your posts and the subject is pretty rare so maybe not many are able to relate or contribute.

It seems if you can't take the person along then you obviously have to find someone else to take care of them. What kind of services are available for this?
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Old 14-10-2013, 06:24   #4
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Re: Disabled child

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I have had 57 views but No one can respond to my post..... We want to cruise with our csy 44 but can not take our son w disabilities..... Please if you are out there I would love to hear from you.... It is a lonely place when you are standing with no one....hope to hear


Widget, people are reading your post with the very real hope that they know something that can help you.

I could be wrong, but I don't think there's anyone else here in your particular shoes.

However, you gave me an idea. I don't know what your son's disabilities are, but there are organizations out there that have specially adapted boats so people with disabilities can sail them. I'm not trying to turn your son into a sailor, but those organizations may know of some of the resources you need.

I will tell you this: you are NOT "bad parents" for wanting to have a life beyond caring for your son.

You don't say what length of trip you want to take. I do know that there are sources for "respite care" out there for at least a weekend. I don't know if they do more than that, but they are *trained* individuals who come in and take care of the offspring with challenges so the parents can have a break from all the responsibilities.

I am not sure how you find these services, but if your son requires hospitalization from time to time I would start with the social worker at that hospital. If you have not needed hospitalization for him, then I would start with his physican, who can connect you to the social work department at any hospital he has privileges at.

Social workers are amazing people and they know of all sorts of resources the rest of us don't know about and never would have thought about.

If you think he might be up to sailing with you, then an occupational therapist with an interest in recreation might be able to help figure out how he could be safely on the boat. I knew a man whose legs were badly affected by polio. We got him on someone's boat using a hoist we have at my sailing club. It will be more difficult if he doesn't have the cognitive abilities to recognize danger, or panics, or might get off the boat and wander, etc.

I'm a retired special education teacher but the great majority of my work was with children. But this is why I know about respite care.

Since you do sail, I hope you'll join in some of the discussions, but also put your post on every sailing forum you can find. Cast your net wide. I bet somewhere there are other sailors dealing with this issue.

Good luck!

Susan
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Old 14-10-2013, 06:33   #5
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Re: Disabled child

it might help if you mentioned the nature of the disability,and reasons that your son is unable to sail with you
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Old 14-10-2013, 06:49   #6
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I don't see why it would be a problem. You know your child's limitations and abilities. Some people of able body and mind that come on here don't know their own. You can make adjustments to your boat and your skills to compensate. Just like people who cruise with young children.

I say go cruising. When you and your boat are ready.

Edit: I just reread. You can't take the child with you? Then, surely there are other options, like raku said.
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Old 14-10-2013, 06:57   #7
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Re: Disabled child

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No one can respond to my post.....
i am autistic, does that make you feel better?
seriously, you have to post your child's issues if we are to give you ideas.
are they likely to jump off the boat? throw a tantrum while your in a bad situation?
yank the wheel and broach the boat? i cannot see many reasons you could not take them sailing, aside from needing medical intervention on a regular and non-routine basis.
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Old 14-10-2013, 06:59   #8
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Re: Disabled child

I helped rebuild and adjust boats for disabled people (physical limitations). I also know people who sailed day-boats with crews of people with mental disabilities. So, from my perspective, things get done. But it is not my perspective that counts but rather the perspective of the disabled person, and of their custodians (in case of a deeper mental disability).

Is your son willing to go? If so, what is the actual limitation you find difficult to overcome?

b.
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Old 14-10-2013, 08:09   #9
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Re: Disabled child

...on a different front...When I was taking flying lessons at Chicago Midway Airport in the 70's, I was surprised to see a priest flying a Cessna on his own without having his legs; he lost them in the Vietnam war. His Cessna was custom refitted with hand controls for the rudder and the brakes; pilots use their feet, while taxiing, to steer (rudder control) and brake. In addition, he was able to slide down his wheel chair and become mobile; on his own without any assistance.

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Old 14-10-2013, 09:22   #10
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Re: Disabled child

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... When I was taking flying lessons at Chicago Midway Airport in the 70's, I was surprised to see a priest flying a Cessna on his own without having his legs; he lost them in the Vietnam war...
If there's a will, there's a way!
Reminds me of Douglas Bader
http://en.wikipedia.org/wiki/Douglas_Bader
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Old 14-10-2013, 09:55   #11
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Re: Disabled child

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Originally Posted by widget55 View Post
I would love to hear from others that cruise and have a cAdult disabled child that they still care for
Hi Widget,
I have an 28 yo disabled child with severe developmental delays and uncontrolled neurologic issues. He no longer lives with us, so I'm not in your exact circumstance. He does come for vacations. He enjoys day sailing and could probably do an overnight, but we haven't tested it.

As others have said, the variations in disabilities and your cruising objectives are major factors. Regardless, has your child ever been in a respite situation? Our son lives in a very good setting, but also goes for respite to one of two other households for several weeks a year. He enjoys it, though the initial time in a new place has all of us holding our breath for a bit. If you're looking for the ability to cruise for two or three weeks, this is a viable option. If you've never done it before, stay home and try respite for a long weekend so you can assess how it's working before leaving on the boat.

We're not long term cruisers, but we have discussed taking the boat down to the Bahamas for the winter. My son's living situation and his family/caregiver network are strong enough that I would feel safe doing that. However, it would not have been viable when he was living at home.

Lots of variables here and each with their own challenges. Happy to be more specific if you're clearer about your circumstances and objectives.
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Old 14-10-2013, 20:55   #12
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Re: Disabled child

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Hi Widget,
I have an 28 yo disabled child with severe developmental delays and uncontrolled neurologic issues. He no longer lives with us, so I'm not in your exact circumstance. He does come for vacations. He enjoys day sailing and could probably do an overnight, but we haven't tested it.

As others have said, the variations in disabilities and your cruising objectives are major factors. Regardless, has your child ever been in a respite situation? Our son lives in a very good setting, but also goes for respite to one of two other households for several weeks a year. He enjoys it, though the initial time in a new place has all of us holding our breath for a bit. If you're looking for the ability to cruise for two or three weeks, this is a viable option. If you've never done it before, stay home and try respite for a long weekend so you can assess how it's working before leaving on the boat.

We're not long term cruisers, but we have discussed taking the boat down to the Bahamas for the winter. My son's living situation and his family/caregiver network are strong enough that I would feel safe doing that. However, it would not have been viable when he was living at home.

Lots of variables here and each with their own challenges. Happy to be more specific if you're clearer about your circumstances and objectives.
It's sounds like you live in our shoes. Nick is Down syndrome with a lot of mental health issues.... OCD and major behaviors. He at this time has a good living arrangement. In two years we are hope to try to cruise but in hopes he can go for a month without seeing us. Right now if we do not visit him which he k
Lives an hour away... He has some major behaviors. We have another son that is deaf with some brain damage... He does ok and has a part time job. He will probably always live with us . He needs support from us..... If we become cruisers... It probably will have to be two,three or foUr weeks at a time. We have meet and talk to many cruisers but no one with a child w a disablity. It seems that many had no children at all.
We are just still wondering could it really be reality for us to even think about.
We have a csy 44, now on a local lake. We brought the boat from Jacksonville where we had it for three years. We could never get down there because of wo.rk so brought it up to our local lake...... Thanks for all the responses
Planning for us is not easy.....I would love to hear from you if you do cruise for any length of time
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Old 14-10-2013, 21:15   #13
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Re: Disabled child

Hiya Widget! Have you spoken to his doctor about bringing your child aboard a boat and cruising? Your doctor can assess the situation and give you advice on how to proceed; this is my suggestion. The extent of the disability will prevent most us to give you useful suggestions. Even my wife, who is doctor, refrained from giving any recommendations as she would need to directly examine the patient first. Once again, your doctor should be consulted. Doctors work with Bio-engineers who can design and build "gadgets/prosthetic" that will help the disabled in their environment. Good luck!

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Old 14-10-2013, 21:41   #14
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Re: Disabled child

We are cruising in the Caribbean with our disabled ten year old. Down Syndrome, for her, would be an enormous improvement in both physical and mental ability, probably on the order of a miracle cure. We are still figuring out how well this life will work, but so far it is going wonderfully.

I'm happy to go into more detail, but the details are probably specific to us.

We've met another family who has been out cruising for over a year with their adult child with Down Syndrome. They are doing great: they all seem happy.
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Old 15-10-2013, 07:05   #15
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Re: Disabled child

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Hiya Widget! Have you spoken to his doctor about bringing your child aboard a boat and cruising? Your doctor can assess the situation and give you advice on how to proceed; this is my suggestion. The extent of the disability will prevent most us to give you useful suggestions. Even my wife, who is doctor, refrained from giving any recommendations as she would need to directly examine the patient first. Once again, your doctor should be consulted. Doctors work with Bio-engineers who can design and build "gadgets/prosthetic" that will help the disabled in their environment. Good luck!

Mauritz
I would take this advice with a grain of salt. I am a physician and so is my son's mother. There are definitely aspects of the care and management of disabled children which are amenable to the medical model. Our son is on multiple medications for a very complex form of epilepsy. No way we would mess with his meds without extensive discussions with his neurologist. However, much of what you need to consider are the specific behaviors that your child exhibits, what precipitates them and what the implications would be of those behaviors on the boat or if you weren't around. It sounds like your son with Down's is in an environment that would permit you to leave for up to a month and then visit. Depending on where you went, you could manage a full winter in the islands with that pattern if you could afford to fly home for the monthly visits.

It seems your son at home is the limiting factor for cruising. It wasn't clear from your description whether he would be going with you or not. If not, then you are likely limited by the availability of alternative, respite homes. Usually, these are only for a couple of weeks. If he would be cruising with you, you will need to assess the issues that will occur on the boat and whether/how you will address them. As suggested by other responders, disability isn't incompatible with cruising. Deafness certainly isn't going to preclude it as long as you have an established means of communicating and make sure it works on the boat. You have the opportunity to slowly progress from day sails to overnights to longer trips. That will allow you to identify safety or behavioral issues and develop plans to address them. Spending time on the boat during bad weather, even on the lake, would help you see what special plans would be needed if new behaviors arise with stress.

Rather than pre-determining the limits imposed by your circumstances, consider small steps in the direction that you want to go. You'll learn along the way and can then adapt your approach. You may end up with the limits you describe. Or you may find you can do much more than anticipated.
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