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Old 15-10-2013, 06:48   #16

Join Date: Aug 2011
Location: Tampa Bay area
Boat: Hunter 31'
Posts: 5,731
Re: Disabled child

Originally Posted by tartansail View Post
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.

I agree with this. I really do have a wonderful doctor, but he doesn't know how to tell me to keep myself safe on a sailboat, and my disability is extremely mild (CP that affects my legs, but not severely). Now that it has led to other problems (SI joint problems), he again does not know what to tell me. He's a generalist. He's not an expert on movement disorders. That's why there are specialists. I will be seeing specialists for the CP for the first time in my life. We have to decide if I need a lift in my right shoe, confirm that it's the SI, and then possibly do a fairly complicated test to confirm that. My doctor can refer me to those people, but he does not have their expertise.

In the original poster's case of a person with disabilities, if they're going on a boat, esp. one as complicated as a sailboat, the perfect person would to judge whether their son can adapt to a sailboat would be an occupational therapist who sails and has sailed on many types of boats.

But the parents may have already made the decision that it's not a good idea, and they are the true experts on their son. No one knows their son, nor cares about him as much, as the parents do. To use a word I actually dislike, they are the deciders.

But if the adult with the disability will not be safe on board (and this is a call only his parents can make right now) there may be respite options.

Now we've moved into a new field of expertise (and it is a field of expertise): social work. They need a medical social worker, not just any social worker, because their personal networking is part of the expertise.

There may well be good, skilled, respite care these parents can use. If the person is good, their son will *enjoy* his time away from his parents and in fact be enriched by it. It will be a win/win for everyone.

They should test the agency by leaving their son in their care while they do something on land, fairly close by, so they can be certain their son will be well cared for and have an enjoyable experience while they are gone. They can do things to help that happen, like renting movies he is likely to enjoy, having his favorite foods in the house, etc.

Many times there is no charge for respite care but that's within the expertise of the medical social worker as well.

This is what I know about this situation based on a lifetime of working in special education. The son's doctor doesn't have the answers, but he or she can refer the family to a medical social worker.

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