Cruising with Special Needs Kids

[roverhi]

I substitute teach occasionally and especially try and get the class that the down's syndrome kids are in. They are fun to work with, seldom have an attitude and quite often function at a pretty high mental level, given their handicap. Of course there is quite a variation in capabilities between the kids. Most are capable of helping out on a boat and would probably enjoy cruising immensely.

Most of the kids with intelligence disabilities also have coordination problems. Not that they are total clutzes. Trying to help them build a bird house with hammer and nails can be interesting. So you will have to make your boat as safe as is possible, use systems to keep them on board and not ask them to do things that they aren't capable of.

The suggestion to hang out with your child's class is a good one. Most of the people that work with these kids are very good at training them to function in the world. I'm sure you could pick up some great ideas. You might even invite the teacher and/or aides to go for a sail with you and your child so they can lend some of their expertise in a boating environment. They'd probably appreciate the chance to get out on the water, but I'd even pay them if I had to.

I'm sure you are aware of the health issues with Down's Syndrome and will carry the proper medicines to handle their unique needs.

I'd say go for it. Can't think of a better thing to do with a child like yours. The only reason I could see not to go is if you think the progress they are making in school might surpass the experience on a boat. In any case, it will only be a few more years before they are out of school, if you decide it's better that stayed in school.

Aloha
Peter O.
Pearson 35

[svHyLyte]

I have a niece that was a "Special Needs" child with some physical as well as intellectual challenges, tho' now she is a happy near-middle aged woman.

When she was just a small child I was visiting her mother when some of the neighborhood children happened to be playing in the area of her home. My niece, seeing them, became very excited and wanted to take part. Much to my surprise, her mother pulled her jacket on and admonished her to remain within eyesight of the terrace where we were visiting. With this the child rushed out to join the other children and was generally well accepted by all but one or two who were very cruel--so much so that I arose, picked up a handy 5-Iron, and prpared to go to her rescue. Her mother, however, put her hand on my arm and restrained me saying "Please. Wait just a moment".

Shortly my niece turned to her two 8-year old or so tormenter's and said in a clear self confident voice: "God gave us all a defect. It's just happens that you can see mine..."

With this, the evil little rats paused, looked at one another; and then turned and ran off, leaving my niece and the other children to have a great time playing in the piles of fallen leaves and blowing Dandy Lion "parachutes" about (tho' her father was none too pleased with that part of the story when later told of the affair).

Take the child sailing...you have everything to gain.

FWIW...

s/v HyLyte

[Chief Engineer]

Try the Kennedy-Krieger School at Johns Hopkins in Baltimore.

There is also an organization in Baltimore that sets up home-schooling for cruisers

I know a couple that liveaboard their boat and they work there developing curricula.

I will get the name in the AM

[DavidGC]

Originally Posted by roverhi

You might even invite the teacher and/or aides to go for a sail with you and your child so they can lend some of their expertise in a boating environment. They'd probably appreciate the chance to get out on the water, but I'd even pay them if I had to.

This is an excellent suggestion. Even though my wife works with other children with autism in our local school, we both often miss things that are right in front of our face. It's hard to take a clinical view when the child is your own.

Several times we have had various therapists come into our home and observe. The suggestions and insights they have offered have been great (and my wife and I are often left looking at each other and saying, "Duh! Why didn't we figure that out a long time ago?")

Even though we're not cruising, I'm going to follow this suggestion and invite one of my son 's therapists for a day sail. I bet she'll have several good ideas on how to make the experience better for my son.

Thanks for this suggestion (and yes, I am sitting here saying, "Duh! Why didn't I think of that?)

DGC

[Jan B]

My daughter is 29 and autistic. She doesn't cruise with us, as she lives with my ex-husband in Florida. However, I do have some advice for you, as a retired teacher and mother of a special needs child.

Jennifer was always enrolled in self-contained special ed classes, occasionally mainstreamed, but the focus was ALWAYS on "Daily Living Skills." I recall her high school special ed teacher constantly reminding her students to use "high school manners." In other words, there was a focus on helping the students fit in with the rest of the population and become independent. Google "Daily Living Skills" and you will find a wealth of information. Here's just one site I found: Home Living/ Daily Living - Skills Inventory. There are even detailed lessons on this site for teaching Daily Living Skills.

Another autistic child in our school district, very much like Jennifer, was always mainstreamed in regular ed classes with a full time aide through elementary and middle school. Eventually the two girls ended up together in the same high school self-contained special ed classroom after the other girl's parents realized she could not function in regular ed classes. Jennifer, having been in classrooms focusing on those daily living skills, grew into a self-sufficient, friendly adult who loves to be around other people and enjoys working. The other girl graduated and never got a job, doesn't like to be in groups, and basically lives at home with her parents, rarely interacting with other people. I am convinced that when her parents insisted on focusing on academics in regular ed classrooms, she did not learn the skills to be an independent adult. Both girls had similar autistic characteristics and abilities when they were in preschool. As adults, they are very different.

In Ohio, where Jennifer attended school, students are allowed to stay in their special ed classrooms until the year they turn 21. At that time Jennifer got a job in a sheltered workshop. High school special ed teachers spend a great deal of time easing their students into jobs. When they graduate from high school, they are often already working part time at their new jobs. This is something you will need to consider, as eventually you will stop cruising and you will want your son to have a job. Without the assistance of teachers, it will be up to you to make those contacts with your state agencies. Living in Florida, you probably realize that many areas of the state do not have good job opportunities for special needs adults so before you decide where you will live, investigate the job possibilities for your son. The teachers in the school your son is attending now can probably give you advice about jobs for him in Florida.

My advice to you is to find out what those teachers are doing in the area of "Daily Living Skills." That is what you will need to focus on to ensure that you child becomes all that he can be. If you can find a curriculum used by special ed teachers, use that. Don't worry about the academics. Teach him the geography of the countries you visit and teach him math by measuring and counting things on your boat. Have him follow directions, verbal and written, for his jobs as first mate. Have a schedule for him to follow each day, as consistency is important. In other words, make his "academic" learning a hands-on practical experience. That is what special ed teachers do.

An IEP, Individualized Education Plan, is something schools use to adapt the curriculum to a child's special needs. IEP's are written for any student who needs extra assistance, whether it is taking a test in a quiet place because he/she is easily distracted or sitting close to the teacher because he/she has difficulty hearing. Use the IEP which you currently have for your son, which is no doubt very detailed and specific, as professionals have written it with his needs in mind. When you meet with your son's teachers, they should be able to help you add future items to the plan for the years you are cruising.

If your son does not recognize dangerous situations, you will need to have specific plans in mind for him, such as always wearing a life jacket and perhaps a tether when he is outside. (I'm sure you've already thought of this.) Think of everything that could possibly be dangerous for him, and make a plan.

Good luck and do let us know what you decide. If you take him cruising, I suggest you keep a blog, as no doubt other parents of special needs children would be interested in your experiences.
Jan

[Chief Engineer]

www.calvertschool.org

PM me if you want a contact name. (He's a sailor)

Originally Posted by Chief Engineer

Try the Kennedy-Krieger School at Johns Hopkins in Baltimore.

There is also an organization in Baltimore that sets up home-schooling for cruisers

I know a couple that liveaboard their boat and they work there developing curricula.

I will get the name in the AM

[kevingy]

I apologize for taking so long to reply. Work has been keeping me very busy lately.

Thank you to all who have replied. I have read every post multiple times. I don’t have time to reply to everyone individually, so, here’s my shotgun response:

I guess I should say something about our son. He’s, from what I can tell, a stereotypical Downs kid. He’s typically a very happy, outgoing, steadfastly stubborn, people person. He doesn’t transition well. It’s always one task at a time and, unless there is pizza or some other bribe involved, changing tasks takes a lot of effort. That’s not to say that he’s not smart. He may be developmentally challenged, but it’s not going to take long before he’s teaching me how to run whatever comes after a DVD player. He understands a great deal, he doesn’t speak much – and almost never outside of his family circle. He knows some sign language, but most people outside of his family circle do not. That creates a communication barrier that frustrates him to no end and further hinders his development and opportunities for independent living. Other than the occasional tantrum, there isn’t a behavioral problem.

As my wife and I do not own a home in the county where our son goes to school, once our lease runs out, the school system has no obligation to continue to provide services to us. We might be able to talk our son’s teacher into providing guidance “on her own time”. She might do it. We will maintain our Florida residency, but probably not in the same county. Florida does have “virtual school”, but I don’t think it’s available for special needs kids or intended to replace attending a physical school full time.

My wife had the idea of trying to find a tutor to come aboard with us before I posted. She thought it would probably be college intern that would end up getting the job. She didn’t like the idea of either a young girl in a bikini on the boat all the time (because of watching too many Lifetime movies) or a young guy being on the boat all the time (because of our daughter - and too many Lifetime movies). Also, having an additional person would probably affect our boat choice. This option is still on the table. In the short term, I can see this working, especially as a transition for both our son and his parents. I don’t see this being viable long term.

As far as the IEP goes, the IEP only covers the current school year, which at this point is mostly over. From what I’ve seen most of what is on the IEP is almost too generic to be useful. (One of the goals is “Student follows verbal directions 80% of the time.” What 15 year old boy, developmentally challenged or not, can do that?) I say forget the IEP. My real concern is what do I teach him next? One he has learned whatever he’s doing now, where do I go from there?

The above refers primarily to academics, but as Jan said, daily living skills are as important. Our son has been in and out of mainstream schools as we have moved. Every time he’s mainstreamed, his education and behavior (in school and at home) has suffered. His only successful option has been to attend a center school – or at least an isolated special education setting co-located at a mainstream school. Mainstream schools teach almost no life skills. The school he attends now focuses on life skills.

In daily living, our son needs a lot of handholding. It’s not that he can’t put on his own jacket. It’s that he’d rather be cold than to have to put it on himself. It’s not that he needs help up from sitting on the floor. It’s that he’d rather continue to sit on the floor unless he gets the personal attention and interaction of someone helping him up. It’s my hope that our time spent aboard will help him be more independent. My wife and I tend not to hand hold as much as others. We recognize when he’s playing for sympathy. He can’t get away with as much with us. Perhaps when it’s only us around, he’ll get into the habit of doing for himself – or do without.

I’m going to take much of the advice I’ve read here. My wife and I have already been more involved at his school this year. We will likely contact the Calvert School. We’re definitely still going to cruise. We welcome all additional ideas and posts.

Thanks to all,

Kevin

[kevingy]

Originally Posted by slow leak

However, in my experience, the child usually benefits from the structure and social interaction of school.

Structure, yes, I agree. Social interaction, no, not so much.

Our son attends a center school. For those unaware, a center school is a dedicated special education facility. All of the students there are developmentally challenged. Therefore, all of the social interaction he gets is with other developmentally challenged kids all struggling to learn the same social skills.

If he were attending a mainstream school with "normal" kids, he might be influenced to behave more "normally". (As previously mentioned, mainstream schools are not a viable option for our son.) I'll take the social interaction his family and those we meet will provide over the social interaction he currently receives at the center school.

[twisty]

I am definitely with you on the IEP thing. My son has one. He has a verbal IQ of 144, but only a written IQ of 60. Which basically means that he is smarter than most people but there is no connection to the paper at all. What takes a normal child 20 minutes to get on paper takes him 3 hours. In his IEP they have the same line follow direction 80% of the time, which is stupid he follows directions well he just points out the teachers mistakes along the way(they really hate that). His nonsense IEP was the reason we did independent study last semester, and his grades were the highest he has ever achieved in school, go figure.

You probably have already thought of this but I will throw it out there anyways. I googled "life skills curriculum downs syndrome" and basically got nothing, but one link did stand out. It was a link to Amazon and to a book called Life Skills Instruction for All Students With Special Needs That book really wasnt the one that stood out but if you scroll down there is a list of related book on a scroll further down. There are a few there but if life skills are your goal the very first one in that list looks promising as it is activities to teach life skills and I would bet they could be adapted to boat living. There are also a couple others that deal with acedemics.

Good Luck!

[kevingy]

Originally Posted by MV

I am going to make a suggestion and I hope to God I am not viewed as the evil man I am for making this suggestion.... but here goes....

For the record, no offense taken here and I don't think you're evil for making the suggestion.

Originally Posted by MV

Have you considered leaving him behind and cruising a route in such a way that you can fly back at regular intervals to visit and spend some time with him?

Yes, it was considered for about half a second. There are a number of reasons we decided this was not an option for us:

1. We (including his sister) would miss him. I don't think we could bear being away from him. Leaving him behind would defeat much of the purpose of wanting to cruise and take away all of the joy. If we can't go as a family, we're not going.

2. Even if we got over #1, there's not a suitable person to keep him, especially for the periods of time we would need. A special needs child is a lot to ask someone else to take on. Everyone we could think of was either already overburdened with their own lives or an unsuitable guardian for our oldest child. (This problem, by the way, is not limited to cruising. We have long struggled and so far failed to come up with a plan for what happens to our son should he outlive his mother and me. Whether we cruise or not, this is a major issue.)

3. While he may not benefit from cruising the same way the "normal" cruisers do, I am certain that he will benefit. His horizons will be broadened. He will grow. He will learn. He will experience. We're not going to stuff him in the bilge and bring him out only for feedings. He's going to share in everything we do, converse with as many people as we can get him to, and walk more of the world than the average American (in fact, I think he already has). That, in and of itself, is as valid an education as any.

[kevingy]

Originally Posted by TaoJones

In another thread, I posted the information that a 16-year-old girl had died of massive head trauma after she was struck in the head when a highly-tensioned hawser securing a mega-yacht snapped. She was a special needs child, I've read.

I appreciate your post, but I don't understand how it applies. The accident really had nothing to do with the girl with special needs. The hawser could have snapped injuring no one or injured someone without special needs. She was simply in the wrong place at the wrong time. It could be said that she shouldn't have been in the wrong place, but I'd argue that it was a simple accident caused by the helmsman, not the girl for being where she was or the parents for letting her go.

[kevingy]

Originally Posted by roverhi

You might even invite the teacher and/or aides to go for a sail with you and your child so they can lend some of their expertise in a boating environment. They'd probably appreciate the chance to get out on the water, but I'd even pay them if I had to.

The more my wife and I think about it, the more we really the idea of having someone onboard full time for a while to teach our son and teach us how to teach our son. How long "a while" is depends on a lot of factors.

A full time tutor/nanny will probably want to be paid for their services. While room, board, and travel opportunities would be part of the compensation, any suggestions on how much this person would be paid? What is the best way to find this person?

[USMCOrdO]

There are several books on IEPs and parents are supposed to be involved in deciding what the goals are for each. My middle school Bi-polar/ADHD child's IEP is focused on his writing skills and attention span. It allows additional time for tests and as he because of his ADD issues the questions can be read if they are long. It also allows for him to type his assignments, instead of writing, which helps reduce the frustration from having to erase and correct and edit when it is terribly sloppy and so time consuming to re-write.

The important take away is that his IEP is renewed annually and if we move, the new school has to use it too so you are not starting over from scratch and we are involved and have input as to what goals we would like and have to sign that we were present, knew our rights, and that we agreed to the IEP.

Hope that helps,

Jay

[sww914]

I too have special needs child. He has Achondroplasia, the same type of dwarfism as the mom & 1 boy from Little People Big World and as Wee Man from the Jackass TV show. We will go cruising eventually. We've traveled outside the country a bit and I've been impressed with the way that people from other cultures are so much more accepting of people with differences. Curious looks here often end in a quick look away but in Mexico for instance they are always followed with a friendly smile. We brought our boy home from the hospital to a boat and lived aboard until he was nearly 2. We only moved ashore after we took him in for a tonsilectomy to make more room in his airway but the doctor was unable to do the tonsils because there wasn't enough room in there and we ended up with a tracheostomy instead. Trachs and water don't mix so we left the boat and sold it. He's 12 now and most of his major health problems are likely behind us now. Now we're looking for another trimaran. My son's only concern so far is not being tall enough to reach some things on a boat. I've told him that it will be OK as long as he learns to pilot a boat well enough, he can be the skipper and I will be the deckhand, and he'll just need to make sure he's the captain on his later sailing situations.
So we'll go when we have the bucks.
My question to you would be- have you tried it for a weekend or a week yet? It may be enough to know if it absolutely will not work or if it probably will. I'm sure that many of his teachers would be willing to accompany your family to some exotic locale for a week or two to try the idea on a charter boat for no pay. I would.
Best of luck to you and thanks for starting this thread.
Here he is, purple hair and all. He wanted to do something crazy for 6th grade picture day.