This is the VERY FIRST edition of our newsletter from 2000. Enjoy!
Greetings! Welcome everyone to our special little group. There are around 10 of us so far. If you have not been included in the member list and would like to be added please send your child's name and age, parent's names, address, email and a brief paragraph about your child. We are also looking for updates and stories about your FHS children.
Cody 9, and Jesse, 6 in 2000 (photo)
How it Began
by Deana Swanson
The Floating Harbor Syndrome Support Group started when I read a short note included in a MUMS (Mothers United for Moral Support) newsletter in 1998. At the end of the note it read: "Floating Harbor Syndrome" and had Jan Passmore's name phone number. I read it three times in disbelief. Since our son was diagnosed in 1997 I had been unable to find anyone else whose child had this unusual and rare syndrome. I contacted Jan and forturnately she lived in the same state as I did-- Michigan at the time. So, we were able to get together not long after our first couple of phone calls. It was fun for us both the see the boys together and note all the similarities. Cody was immediately drawn to Jesse's favorite toy at that time-- a red flashing light from Radio Shack.
At this meeting Jan and I looked over some rough drafts of the brochure and web pages that now exist. We hoped to find other families so that we could share information and help each other. We are glad that you have found as and look forward to your contributions to the group as well.
Jesse Swanson
Age 7, 37" tall, 28 pounds
When Jesse was born a week late weighing 5 pounds, 13 ounces we thought that he was pretty much normal. He progressed normally and sat up and pulled up at around the right times. His eyes were crossed and he had surgery on both eyes for bilateral strabismus (crossed eyes) when he was 11 months old. At one year of age he just seemed to stop progressing and growing. He was unable to walk on his own, although he did get around pretty well by "cruising", or grabbing onto furniture or pushing chairs around and walking behind them.
He only made a few sounds; "baba" for baby, "mama" for me, "dada" for dad, and "lala" for his favorite thing--lights. When he was 18 months old he weighed 14 pounds and only drank milk and would eat a small amount of oatmeal. My pediatrician said that he was fine, but my friends urged me to seek another opinion. He was my first child, so I really wasn't sure what was "normal". We saw a gastroenterologist (a stomach/digestion doctor) who did agree that there was something wrong because he was so small and wasn't gaining weight. We ended up in the hospital for a week with an NG tube inserted through his nose for feedings. He had this for six months and he did gain a few pounds. (He was up to 18 pounds now at 18 months of age.) By the age of 2 he was beginning to walk a little on his own. The negative part about all this was that he never did gain more weight-- only two more pounds the whole year and a half that he was on the feeding tube, and he quit eating by mouth completely. At the time I thought the feeding tube was a good thing because initially he did gain a little bit of weight, but now that I know about his diagnosis of Floating Harbor I wish we would not have had a feeding tube put in. They are just very small, slow to grow and have "failure to thrive".
He ended up with a little "g-button" which is a plug that goes directly into the stomach from the skin over the tummy. When he was three he began to throw up every feeding of the canned formula the doctors recommended. I put him on a more natural diet and within two weeks he was eating by mouth and talking. (See post on "DIET" for more info.) We had also been using sign language for about 2 years at this point to communicate. By the time he was 4 he was eating enough by mouth to remove the g-button. The hole never did quit leaking so he had to have another little surgery to close it up. Because I had been taking him to speech therapy for the past couple of years and had spent time daily working with him at home, and because I just wanted to be with him all day and not have him gone away at school, my husband and I decided to homeschool him. We have done this starting with teaching him sign language at the age of two, through preschool, kindergarten, and now into first grade. He is on grade level (1st) accomplishing what most of his friends of the same age are doing, but we just do it a little differently. Because of his cataracts we use a giant dry-erase board. I'm not sure if it is his eyesight or fine motor skills, but he has trouble writing, so we do some things orally and he writes some of the larger things. This has worked really well for us.
Jesse is fascinated with electronics. his favorite thing to do is to go to electronic stores and look at all the different stereos. He has his own little "studio" at home with a strobe light, a red flashing light, and CD player, a tape player, a box full of CDs and tapes, and a few other gadgets. He spends time there every day and loves to do educational CDs on the computer.
Our biggest struggle thus far has been the catarats. It is really hard for him to see in the sunlight, so we have dark curtains on all the windows, tell him when to take a step down or up, and lead him by the hand whenever we are outside. We try to stay inside during the summer until around 8 p.m. at night. He also has some of the "odd, hyperkinetic behavior" traits as one of the medical articles puts it. We ahve to prepare him carefully for whatever is coming next-- he can't stand anything to happen quickly or unplanned. He also has temper tantrums.
Our greatest joys have been finding out that he does NOT have something serious, and just enjoying his unique and fun personality. He is sweet and loving, and very tender with his younger siblings. Because he is still so tiny, I love being able to pull him up on my lap and cuddle him like he was a toddler.
(Editor's update: Jesse was homeschooled through age 15. He now in a small, private school where his father and I are teachers, doing 5-6th grade work, mostly all on his own.)
Wednesday, October 14, 2009
Monday, October 12, 2009
GROWTH HORMONE for FHS Children
Let me start off this whole article by stating one fact: there is not ONE instance where any FHS child has ever reached a height of over 5 feet 1 inch. After years of shots, they still end up a little short. The doctors really don't know what to "do" with a child with FHS, the parents want the doctors to do something, so growth hormone shots are the easiest, simplest answer for the doctors because the children do have dwarfism-- or short stature.
When tested, they ALL have sufficient growth hormone results-- meaning that their bodies ARE producing the correct amount of growth hormone that naturally occurs in the body. Their bodies just aren't USING it in the right way for some genetic reason-- but giving them MORE of it doesn't help-- their bodies can't put it to use.
The only factor that seems to make any difference is the height of the parents. If the parents are around 6 feet in height, the FHS children will be more near the "tall" end of the FHS spectrum, around 5 feet. If the parents are short, like around 5' 2" then the FHS child will be on the short end of the FHS spectrum-- around 4' 6".
I have researched ALL of the medical journal articles ever published on FHS, and have contact with over 60 families in our support group. NOT ONE of them has included an FHS child who was over 5 feet 1 inch in height.
They WILL have an "initial growth spurt" in which immediately beginning after the start of the growth hormone shots, they will have a growth spurt and shoot up a few inches. HOWEVER, this is not LONG-TERM growth, they still end up between 4 ft. 6 in. and 5 ft. 2 in.-- DEPENDING on the height of the parents, NOT THE SHOTS.
There are parents in our group who have had their children on growth hormone for years and have not experienced any results. Some believe that the shots have helped-- but these are the children who have reached close to 5 feet, and guess what? The parents are around 6 feet in height.
Those are the facts-- period. Here is my opinion:
It is my personal opinion that it is not worth putting these already sensitive, challenged children through something painful and annoying like daily shots to gain -- at most--- a tiny bit of SHORT TERM growth. (Again, in then end there is NO long-term growth). I feel that it is very wrong to put something in their bodies that wasn't there to begin with, and won't do any good once it is there anyway. If a parent wants to feel like they are doing something good for their child, give them healthy foods, proteins and extra fats (which they NEED and can USE--see post on "DIET"), not artificial hormones which won't do any good anyway-- and could do some harm.
There are parents in our group which have worried about side effects that their children DO HAVE after years of growth hormone which include diabetes, extra facial hair on girls and additional behavior problems. I personally feel that it is simply not worth it. I hope this hasn't offended anyone, I just feel that it is really wrong to give these children growth hormone shots.
When tested, they ALL have sufficient growth hormone results-- meaning that their bodies ARE producing the correct amount of growth hormone that naturally occurs in the body. Their bodies just aren't USING it in the right way for some genetic reason-- but giving them MORE of it doesn't help-- their bodies can't put it to use.
The only factor that seems to make any difference is the height of the parents. If the parents are around 6 feet in height, the FHS children will be more near the "tall" end of the FHS spectrum, around 5 feet. If the parents are short, like around 5' 2" then the FHS child will be on the short end of the FHS spectrum-- around 4' 6".
I have researched ALL of the medical journal articles ever published on FHS, and have contact with over 60 families in our support group. NOT ONE of them has included an FHS child who was over 5 feet 1 inch in height.
They WILL have an "initial growth spurt" in which immediately beginning after the start of the growth hormone shots, they will have a growth spurt and shoot up a few inches. HOWEVER, this is not LONG-TERM growth, they still end up between 4 ft. 6 in. and 5 ft. 2 in.-- DEPENDING on the height of the parents, NOT THE SHOTS.
There are parents in our group who have had their children on growth hormone for years and have not experienced any results. Some believe that the shots have helped-- but these are the children who have reached close to 5 feet, and guess what? The parents are around 6 feet in height.
Those are the facts-- period. Here is my opinion:
It is my personal opinion that it is not worth putting these already sensitive, challenged children through something painful and annoying like daily shots to gain -- at most--- a tiny bit of SHORT TERM growth. (Again, in then end there is NO long-term growth). I feel that it is very wrong to put something in their bodies that wasn't there to begin with, and won't do any good once it is there anyway. If a parent wants to feel like they are doing something good for their child, give them healthy foods, proteins and extra fats (which they NEED and can USE--see post on "DIET"), not artificial hormones which won't do any good anyway-- and could do some harm.
There are parents in our group which have worried about side effects that their children DO HAVE after years of growth hormone which include diabetes, extra facial hair on girls and additional behavior problems. I personally feel that it is simply not worth it. I hope this hasn't offended anyone, I just feel that it is really wrong to give these children growth hormone shots.
Safe Harbor, The Newsletter of the FHS Support Group, July 2008, Issue 18
SAFE HARBOR, The official newsletter of the Floating Harbor Support Group
July 2008, Issue 18
Content appears as written by individual authors.
CONNOR, UK, age 3 (pictures coming soon!)
by his parents: Steve & Lesley
Connor is 3 years old and 86.6 cm tall (2 feet, 10 inches); weighing 11.9 kg (26 pounds). He has a broad forehead, slightly low hairline with a hairy back and shoulders. Prior to birth, Connor failed to grow in the last 6 months and when born spent time in a special care unit. In the first 9 months of life he failed to gain weight and was very hard to feed--milk was syringed to him.
Connor has lovely long eyelashes and deep set eyes, a cute botton nose and cheeky smile. He has hypermobile joints, in particular his hands and wrists. He has a dimple at the base of his spine.
Connor has delaye dmotor and language ability. He understands a lot but is unable to speak and gets frustrated. The family can understand his needs, but to most others they think he is younger than his age.
Odd and hyperkinetic behaviour is a real adventure for the rest of hte family. He seems to have endless energy.
We as a family are learning Makaton sign langauge to help, and pictures to aid in recognition. A pictorial time line shows Conner his routine for each day so that he can know what is happening. We are waiting for speeck therapy for him which is hoped will help.
In addition to FHS, Connor suffers with sensory integration, has has poor sense of body position, touch and movement. We have to feed him food that is very textured, and let him play with soft and hard things just to awaken his senses.
We are getting help, however at the same time we want to be involved with everyone and everything.
Robin, Germany, age 8 (photo coming soon)
Robin was born on October 26, 2001, and how he is 1.58 meters high and weighs 16.8 kg. (37 pounds) In the summer he goes to a special primary school because he has langage problems (he speaks very few words). He is delayed physically and mentally.
Robin is a very lively child and has a very good memory. He lobes to play video games. We as parents must make sure that he doesn't do this too much.
We would like his langage to improve and have tried a speech therapist.
We are using sign language and many pictures to communicate.
We look forward to more contact through this support group.
Yours sincerely, the family
Aisling in Ireland
Many thanks for the information you sent regarding FHS. It was most useful. I will certainly be getting some copies to give to Aisling's teachers. (See posts on Info for Therapists & Educators AND Schooling Notes.)
We attend Prof. Andrew Greene, head of Genetics for all of Ireland, and he said there were only about 3 cases of FHS in all of Ireland that he was aware of. He diagnosed Aisling with FHS, but gave no follow up, and because so little is known about FHS I find it very hard to find information, so finding this support group was a Godsend!
Aisling has no medical problems. She has tested negative for coeliac (celiac disease) twice, though she does exhibilt simliar symptoms. Her heart is fine, no murmurs or underlying conditions. We do notice that if she gets cold, her lips and fingernails go blue. That initailly got me worried about her heart, but we have since realised that it is because she has practically no body fat. We are taking a family holiday to Florida in May and have requested heat in the pool because of Aisling.
She is an extremely active, affectionate, intelligent little girl. She warms to everyone she meets and shows no fear around strangers, which can be worrying. She is now 6 years, 7 months old, 119 cm (3 feet 7 inches) and weights 35 lbs. (15.8 kg.) Regards and happy summer to you all.
Aisling's family
Jasmine, Italy
I have seen that in this journal there are many tips. I have noted that there has not been reported any information about teeth care. I would like to inform you about teeth care in these children affected with FH syndrome.
They need to bruch their teeth at least 5 minutes after every meal with a tooth brush as soon as they are old enough.
A doctor has told me to use four in dependence of the age.
My daughter has so many hooles in her teeth albeit she follows a healthy diet (without sweets, cakes and junk food in general). Thank you, Katia in Italy
Isabel, 9, UK
Isabel, now 9 years old, is a delighfully happy girl and a real job to everyone that knows her. The FHS diagnosis was only confirmed a yaer ago and came as a relief to us rather than a shock. Until this time every medical professional she saw was mystified about her little use of speech and small stature. She had undergone many tests and all had found no explanation.
As parents, we were getting very frustrated in regard to her education. Isabel's comprehension was considered by others as very low because she did not communicate very much. Now with an FHS diagnosis everyone at ehr school can appreciate that she CAN understand well beyond what seh can put into words. She is capable of far more than they had previously thought.
Within the las tyear her speech has impoved appreciably and she is growing at a steady rate, keeping up the height of the tallest FHS children of a similar age. We go from week to week seeing her make small but appreciable advances and enjoy every minute with her.
Update on Rhett -- USA
Hello, this is from Rhett's mom, Michele. I hope everyone is doing GREAT. Rhett is loving the beach here in Maine. Only 4 more days fo school. Then of course, off to summer school. He is doing great, except for his behavior is getting worse. Not sure if it is the other kids in the public schools rubbing off onto him with their behavioral issues, or if this is just part of the FHS course. (See post on "Rages".) I am writing for a couple of reasons:
1. I would certainly love to hear from other families that just want to share some info or have questions.
2. Is there any way of knowing how growth hormone shots have worked on other FHS children? The doctors here asked me to see if any kids were benefitting from the shots. And are there any side effects? (See post on "Growth Hormone".)
3. Are there any special vitamins that would benefit him? He doesn't eat all that well, but I do give him a multivitamin-- but anything to benefit him would be great. (See posts on "Diet and Foods for FHS Children".)
Johns Hopkins Study Update
Please contact Deana at littleflock7@gmail.com if you would like to participate in the study.
Trail-a-Bike
There is a special bike called the "trail-a-bike" which attaches to a regular bicycle as a sort of "third wheel". After using this for over a year, our son was finally able to learn to balance well enough to ride a regular 2-wheel bike on his own-- with no training wheels when he was around 12 years of age. It is made by the Adams Bicycle Company.
New Members
I was making some copies of old newsletters for a family and noted that the very first Safe Harbor newsletter went out to just 10 families. We are now up to 60 members in 17 different countries! We've done some growing in the last 9 years haven't we?
Current Number and Location of FHS Member Families
America 24
England/UK 16
Canada 3
Ireland 2
Netherlands 2
Puerto Rico 1
Greece 1
Germany 1
Mexico 1
Israel 1
Austrailia 1
Italy 1
France 1
South Africa 1
New Zealand 1
Brazil 1
Scotland 1
Total: 60 Families
Donations are always appreciated via paypal to: deana@floatingharborsyndromesupport.com
Please visit our webpage at: www.floatingharborsyndomesupport.com
July 2008, Issue 18
Content appears as written by individual authors.
CONNOR, UK, age 3 (pictures coming soon!)
by his parents: Steve & Lesley
Connor is 3 years old and 86.6 cm tall (2 feet, 10 inches); weighing 11.9 kg (26 pounds). He has a broad forehead, slightly low hairline with a hairy back and shoulders. Prior to birth, Connor failed to grow in the last 6 months and when born spent time in a special care unit. In the first 9 months of life he failed to gain weight and was very hard to feed--milk was syringed to him.
Connor has lovely long eyelashes and deep set eyes, a cute botton nose and cheeky smile. He has hypermobile joints, in particular his hands and wrists. He has a dimple at the base of his spine.
Connor has delaye dmotor and language ability. He understands a lot but is unable to speak and gets frustrated. The family can understand his needs, but to most others they think he is younger than his age.
Odd and hyperkinetic behaviour is a real adventure for the rest of hte family. He seems to have endless energy.
We as a family are learning Makaton sign langauge to help, and pictures to aid in recognition. A pictorial time line shows Conner his routine for each day so that he can know what is happening. We are waiting for speeck therapy for him which is hoped will help.
In addition to FHS, Connor suffers with sensory integration, has has poor sense of body position, touch and movement. We have to feed him food that is very textured, and let him play with soft and hard things just to awaken his senses.
We are getting help, however at the same time we want to be involved with everyone and everything.
Robin, Germany, age 8 (photo coming soon)
Robin was born on October 26, 2001, and how he is 1.58 meters high and weighs 16.8 kg. (37 pounds) In the summer he goes to a special primary school because he has langage problems (he speaks very few words). He is delayed physically and mentally.
Robin is a very lively child and has a very good memory. He lobes to play video games. We as parents must make sure that he doesn't do this too much.
We would like his langage to improve and have tried a speech therapist.
We are using sign language and many pictures to communicate.
We look forward to more contact through this support group.
Yours sincerely, the family
Aisling in Ireland
Many thanks for the information you sent regarding FHS. It was most useful. I will certainly be getting some copies to give to Aisling's teachers. (See posts on Info for Therapists & Educators AND Schooling Notes.)
We attend Prof. Andrew Greene, head of Genetics for all of Ireland, and he said there were only about 3 cases of FHS in all of Ireland that he was aware of. He diagnosed Aisling with FHS, but gave no follow up, and because so little is known about FHS I find it very hard to find information, so finding this support group was a Godsend!
Aisling has no medical problems. She has tested negative for coeliac (celiac disease) twice, though she does exhibilt simliar symptoms. Her heart is fine, no murmurs or underlying conditions. We do notice that if she gets cold, her lips and fingernails go blue. That initailly got me worried about her heart, but we have since realised that it is because she has practically no body fat. We are taking a family holiday to Florida in May and have requested heat in the pool because of Aisling.
She is an extremely active, affectionate, intelligent little girl. She warms to everyone she meets and shows no fear around strangers, which can be worrying. She is now 6 years, 7 months old, 119 cm (3 feet 7 inches) and weights 35 lbs. (15.8 kg.) Regards and happy summer to you all.
Aisling's family
Jasmine, Italy
I have seen that in this journal there are many tips. I have noted that there has not been reported any information about teeth care. I would like to inform you about teeth care in these children affected with FH syndrome.
They need to bruch their teeth at least 5 minutes after every meal with a tooth brush as soon as they are old enough.
A doctor has told me to use four in dependence of the age.
My daughter has so many hooles in her teeth albeit she follows a healthy diet (without sweets, cakes and junk food in general). Thank you, Katia in Italy
Isabel, 9, UK
Isabel, now 9 years old, is a delighfully happy girl and a real job to everyone that knows her. The FHS diagnosis was only confirmed a yaer ago and came as a relief to us rather than a shock. Until this time every medical professional she saw was mystified about her little use of speech and small stature. She had undergone many tests and all had found no explanation.
As parents, we were getting very frustrated in regard to her education. Isabel's comprehension was considered by others as very low because she did not communicate very much. Now with an FHS diagnosis everyone at ehr school can appreciate that she CAN understand well beyond what seh can put into words. She is capable of far more than they had previously thought.
Within the las tyear her speech has impoved appreciably and she is growing at a steady rate, keeping up the height of the tallest FHS children of a similar age. We go from week to week seeing her make small but appreciable advances and enjoy every minute with her.
Update on Rhett -- USA
Hello, this is from Rhett's mom, Michele. I hope everyone is doing GREAT. Rhett is loving the beach here in Maine. Only 4 more days fo school. Then of course, off to summer school. He is doing great, except for his behavior is getting worse. Not sure if it is the other kids in the public schools rubbing off onto him with their behavioral issues, or if this is just part of the FHS course. (See post on "Rages".) I am writing for a couple of reasons:
1. I would certainly love to hear from other families that just want to share some info or have questions.
2. Is there any way of knowing how growth hormone shots have worked on other FHS children? The doctors here asked me to see if any kids were benefitting from the shots. And are there any side effects? (See post on "Growth Hormone".)
3. Are there any special vitamins that would benefit him? He doesn't eat all that well, but I do give him a multivitamin-- but anything to benefit him would be great. (See posts on "Diet and Foods for FHS Children".)
Johns Hopkins Study Update
Please contact Deana at littleflock7@gmail.com if you would like to participate in the study.
Trail-a-Bike
There is a special bike called the "trail-a-bike" which attaches to a regular bicycle as a sort of "third wheel". After using this for over a year, our son was finally able to learn to balance well enough to ride a regular 2-wheel bike on his own-- with no training wheels when he was around 12 years of age. It is made by the Adams Bicycle Company.
New Members
I was making some copies of old newsletters for a family and noted that the very first Safe Harbor newsletter went out to just 10 families. We are now up to 60 members in 17 different countries! We've done some growing in the last 9 years haven't we?
Current Number and Location of FHS Member Families
America 24
England/UK 16
Canada 3
Ireland 2
Netherlands 2
Puerto Rico 1
Greece 1
Germany 1
Mexico 1
Israel 1
Austrailia 1
Italy 1
France 1
South Africa 1
New Zealand 1
Brazil 1
Scotland 1
Total: 60 Families
Donations are always appreciated via paypal to: deana@floatingharborsyndromesupport.com
Please visit our webpage at: www.floatingharborsyndomesupport.com
Friday, October 9, 2009
Schooling Notes
Many parents and educators have asked the question, "How do we deal with our FHS children in school situations?" There have been several positive situations in which the following procedures were key:
1. SCHEDULE Floating Harbor children obviously have problems with their endocrine syster; the glands and hormones which affect growth, metabolism, weight gain, bone growth etc. This system also helps our bodies adapt to change-- which is a problem for FHS children. Keeping them on as regular a schedule as possible is highly important. They function much better when the same subjects are taught in the same order at the same time of day. They also do better if they know when, and for how long they will have their breaks. If something IS going to be different, let them know well in advance and remind them often of the upcoming change.
2. MOTIVATION FHS children do better with some type of motivation. This can be both positive and negative. If they are told they can't play video games, watch TV, etc. until all their schoolwork is done you might be surprised how quickly they can get it finished. They also need positive encouragement and to be rewarded when a job has been well-done. A special snack or small prize could be sufficient.
3. REPETITION It seems that is takes FHS much longer to internalize concepts. It might take them YEARS of practicing subtraction problems until they really "get it." A few teachers have accomplished this by moving "sideways" across different curricula. For instance, if by lesson 30 they are not able to keep up with the work, go to another curriculum or workbook and start with lesson 1. Work up to as far as they are able until they hit another "wall" and are not able to do anymore. THEN, either go back to lesson 31 from the FIRST curriculum, OR start a third one and work up to where they are able, THEN go back to the first or second one. This gives the child the chance to work at a pace much more suitable to their level of learning AND gives them a sense of accomplishment. They feel that they are to do some work without getting overwhelmed or frustrated.
4. CURRICULUM The work itself has to be "palatable". If they are given 3-4 pages full of tiny little math problems you don't stand a chance of them getting much of it done at all. Instead, chose curricula that are colorful and large with only a few problems on each page. If this is STILL overwhelming to them then have them do half the problems, then finish the rest after a break or the next day. This way they are still learning, progressing and accomplishing something, but at a rate more suitable to their learning capabilities.
Note: Make sure that they aren't being over-dramatic. If their favorite thing to do after school is to watch a video and they go 2-3 days with no video then you KNOW they are being asked to do too much. The opposite is also true. They may whine and complain when they are fully capable of doing the work. Apply #2 in this case and figure out what is really going on.
5. MANIPULATIVES FHS children thrive on kinesthetic activities. The more manipulatives used the better they will do. WHile the ones for math are more obvious, flash cards can be used for sign language, speech or phonics, rocks and leaves or nature walks for science (they also love the little electronic kits), and using computer programs have all worked successfully with FHS children.
Suggested curricula or workbooks for at-home or school use:
*Sing, Spell, Read and Write (Pearson Education) Bright, colorful workbooks starting at Pre-K. The entire program is a little expensive, but the individual workbooks are reasonable, effective and very "palatable" and fun too.
*Singapore Math This math program focuses on doing fewer problems with different ways of processing the information. This also uses several manipulatives.
*Rod and Staff Math Uses ducks in a pond for counting, take 2 days to do one workbook page.
*Stages Learning Materials Picture cards for sign language, flash cards with animals, careers, food, objects etc.
*Touch Math Dots on the numbers help students count and visualize the numbers and their values.
*Good Literature with interesting stories and pictures. Excellent book list at sonlight.com
For more information please contact the FHS support group at :
www.floatingharborsyndromesupport.com
1. SCHEDULE Floating Harbor children obviously have problems with their endocrine syster; the glands and hormones which affect growth, metabolism, weight gain, bone growth etc. This system also helps our bodies adapt to change-- which is a problem for FHS children. Keeping them on as regular a schedule as possible is highly important. They function much better when the same subjects are taught in the same order at the same time of day. They also do better if they know when, and for how long they will have their breaks. If something IS going to be different, let them know well in advance and remind them often of the upcoming change.
2. MOTIVATION FHS children do better with some type of motivation. This can be both positive and negative. If they are told they can't play video games, watch TV, etc. until all their schoolwork is done you might be surprised how quickly they can get it finished. They also need positive encouragement and to be rewarded when a job has been well-done. A special snack or small prize could be sufficient.
3. REPETITION It seems that is takes FHS much longer to internalize concepts. It might take them YEARS of practicing subtraction problems until they really "get it." A few teachers have accomplished this by moving "sideways" across different curricula. For instance, if by lesson 30 they are not able to keep up with the work, go to another curriculum or workbook and start with lesson 1. Work up to as far as they are able until they hit another "wall" and are not able to do anymore. THEN, either go back to lesson 31 from the FIRST curriculum, OR start a third one and work up to where they are able, THEN go back to the first or second one. This gives the child the chance to work at a pace much more suitable to their level of learning AND gives them a sense of accomplishment. They feel that they are to do some work without getting overwhelmed or frustrated.
4. CURRICULUM The work itself has to be "palatable". If they are given 3-4 pages full of tiny little math problems you don't stand a chance of them getting much of it done at all. Instead, chose curricula that are colorful and large with only a few problems on each page. If this is STILL overwhelming to them then have them do half the problems, then finish the rest after a break or the next day. This way they are still learning, progressing and accomplishing something, but at a rate more suitable to their learning capabilities.
Note: Make sure that they aren't being over-dramatic. If their favorite thing to do after school is to watch a video and they go 2-3 days with no video then you KNOW they are being asked to do too much. The opposite is also true. They may whine and complain when they are fully capable of doing the work. Apply #2 in this case and figure out what is really going on.
5. MANIPULATIVES FHS children thrive on kinesthetic activities. The more manipulatives used the better they will do. WHile the ones for math are more obvious, flash cards can be used for sign language, speech or phonics, rocks and leaves or nature walks for science (they also love the little electronic kits), and using computer programs have all worked successfully with FHS children.
Suggested curricula or workbooks for at-home or school use:
*Sing, Spell, Read and Write (Pearson Education) Bright, colorful workbooks starting at Pre-K. The entire program is a little expensive, but the individual workbooks are reasonable, effective and very "palatable" and fun too.
*Singapore Math This math program focuses on doing fewer problems with different ways of processing the information. This also uses several manipulatives.
*Rod and Staff Math Uses ducks in a pond for counting, take 2 days to do one workbook page.
*Stages Learning Materials Picture cards for sign language, flash cards with animals, careers, food, objects etc.
*Touch Math Dots on the numbers help students count and visualize the numbers and their values.
*Good Literature with interesting stories and pictures. Excellent book list at sonlight.com
For more information please contact the FHS support group at :
www.floatingharborsyndromesupport.com
WELCOME !
Welcome to the Floating Harbor Support Group ! We are a group of over 50 families worldwide who are devoted to loving and helping our precious special children and adults.
This support group was founded in 1999 by Jan Passmore and Deana Swanson, both of whom had FHS sons very close in age (6 and 8 at the time) and happened to live in the same state. After a few years of searching for other families with the same diagnosis they were happy to have found each other and compare stories and coping strategies.
The support group was started to spread this information to other families with FHS children. Brochures, pictures and medical journal articles are available, as well as Safe Harbor, the FHS Support Group newsletter which is published three times a year. Pictures, articles, updates and questions are all welcome.
If you wish to contact the support group please contact Deana at the e-mail listed in this blog. She has studied FHS extensively, and collected medical journal articles on FHS and information from the families in the support group for over 10 years. We will be more than happy to assist you in any way that we can.
This support group was founded in 1999 by Jan Passmore and Deana Swanson, both of whom had FHS sons very close in age (6 and 8 at the time) and happened to live in the same state. After a few years of searching for other families with the same diagnosis they were happy to have found each other and compare stories and coping strategies.
The support group was started to spread this information to other families with FHS children. Brochures, pictures and medical journal articles are available, as well as Safe Harbor, the FHS Support Group newsletter which is published three times a year. Pictures, articles, updates and questions are all welcome.
If you wish to contact the support group please contact Deana at the e-mail listed in this blog. She has studied FHS extensively, and collected medical journal articles on FHS and information from the families in the support group for over 10 years. We will be more than happy to assist you in any way that we can.
Educational Information for Professionals, Therapists, Educators and Parents of FHS Children
Floating Harbor Syndrome was "discovered", or named in the 1970's, so there is not a lot of long-term information available. They do usually "graduate" with a special diploma and spend much time in special education classes with some mainstreaming in history, science etc., often with a full-time aide.
In terms of educational planning, at the age of 3 most of them are just beginning to speak, using sign language, flash cards with pictures of objects, colors, etc., or a board they can point to with pictures of food, drink, swings, toys, bed, bath, etc. The children are somewhat intelligetn and once the communication barrier has been overcome (usually through the use of sign language) it is amazing to discover what goes on in their little brains.
Speech therapy is somewhat helpful, but they do not usually have the capability to speak until they are around 3-4 years of age. Without intervention this can be much later. The girls tend to do better than the boys in the area of speech. They have a "lazy tongue" and slurred speech, along with a varied assortment of substitutions for the "r", "l" and other letter sounds. Sometimes only the parents can understand them.
They are delayed in their learning and also progress at a slower pace than "normal" students would. They can learn phonics and math at around 4-7 years of age and can learn to read around 6-9 years of age if the proper methods are used. They struggle greatly with anything tedious (which to them is just about anything), especially fine motor skills like writing. Many do worksheets orally. They CAN write large letters and numbers and don't seems to get as discouraged if they have success with just a small number of problems to solve.
They THRIVE on schedule, and function best if they are told repeatedly when something will be different way ahead of time. They also seem to handle things best in small chunks, like 20 min. of reading, then 20 minutes of a different educational activity like naming objects on flash cards, then onto the enxt activity, as long as the schedule is the same day after day. If they child is old enough to read they love charts and schedules posted on walls. Picture charts could be used for younger children.
They also have "obsessions", and again the boys seem to have this more intensely than the girls. They will repeatedly turn their attention back to their obsession once they have l0st interest in whatever you want them to be doing. It is best for them to only be allowed to do their obsession once all their schoolwork is done. Exception: Sometimes it is very helpful to use the obsession to get them to do something they really struggle with. I taught my son to read using his "obsession"--electronics. He would look at the Radio Shack catalog for hours. He was especially interested in the lights. He was doing pretty well with phonics, but the actually reading books were too tedious for him, and he had cataracts that really hindered his ability to see little letters. I got a LARGE dry erase board and every day I would write an entire description of one of his favorite items for the Radio Shack catalog. He loved it. It held his interest and he'd really work at trying to get even the 4 and 5 syllable words. He reads very well now, although he does struggle with pronunciation and spelling.
Big colorful worksheets, flash cards, and anything kinesthetic is helpful.
Here are some examples from my own experiences with my FHS son of how their brains work that I hope will help you understand these special children better.
My son's obsession as I already stated is electronics. When he was 2 he could only say "mama" and "lala" (for light). Wherever we would to he would use sign language to ask permission to take a chair over to the light switch and repeatedly turn it off and on with a huge smile on his face.
When he was 3 he carried around a little tape recording playing and recording (mostly recording) tapes.
When he was 4 he loved the VCR. When we were learning shapes he kept saying "play" for triangle and "stop" for square, and "record" for the circles. I then realized that he was saying the shapes on the buttons of the VCR-- and that he was exactly correct every time.
When he was 5-6 he began recoring his own videos. He also couldn't seem to learn left and right. Then he started saying "fast forward" every time I turned right when I was driving, and "rewind" every time I turned left. At the age of 14 he still referred to left and right this way.
When he was 9 he hooked up a TV antennae to the back of an old computer I had given him and recorded television programs that he'd somehow received into the computer from the antennae onto some other program on the computer that I didn't even know existed-- and he'd play them back for us.
From that time on he just loved computers. He is now making slide shows from pictures he takes with his digital camera and making his own CDs and DVDs.
He also reads quite well and especially enjoys long, boring, detailed electronic manuals. And, he will remember just about anything he reads in them, like if grains get stuck in the grain mill and it is jammed and won't run, then just attach a vacuum hose to the openings and vacuum them out. OR the hour and minutes to set the time on the car are those two minute buttons just beneath the volume knob on the car stereo. And he's almost always correct.
At age 15 he is doing 3rd grade math, 5th grade language arts, and 6th grade history, science etc. (much of the later orally). He really struggles with math although he does enjoy it more using the calculator. He is just now getting the concept of borrowing and multiplying even though we've been going over it for years.
In terms of educational planning, at the age of 3 most of them are just beginning to speak, using sign language, flash cards with pictures of objects, colors, etc., or a board they can point to with pictures of food, drink, swings, toys, bed, bath, etc. The children are somewhat intelligetn and once the communication barrier has been overcome (usually through the use of sign language) it is amazing to discover what goes on in their little brains.
Speech therapy is somewhat helpful, but they do not usually have the capability to speak until they are around 3-4 years of age. Without intervention this can be much later. The girls tend to do better than the boys in the area of speech. They have a "lazy tongue" and slurred speech, along with a varied assortment of substitutions for the "r", "l" and other letter sounds. Sometimes only the parents can understand them.
They are delayed in their learning and also progress at a slower pace than "normal" students would. They can learn phonics and math at around 4-7 years of age and can learn to read around 6-9 years of age if the proper methods are used. They struggle greatly with anything tedious (which to them is just about anything), especially fine motor skills like writing. Many do worksheets orally. They CAN write large letters and numbers and don't seems to get as discouraged if they have success with just a small number of problems to solve.
They THRIVE on schedule, and function best if they are told repeatedly when something will be different way ahead of time. They also seem to handle things best in small chunks, like 20 min. of reading, then 20 minutes of a different educational activity like naming objects on flash cards, then onto the enxt activity, as long as the schedule is the same day after day. If they child is old enough to read they love charts and schedules posted on walls. Picture charts could be used for younger children.
They also have "obsessions", and again the boys seem to have this more intensely than the girls. They will repeatedly turn their attention back to their obsession once they have l0st interest in whatever you want them to be doing. It is best for them to only be allowed to do their obsession once all their schoolwork is done. Exception: Sometimes it is very helpful to use the obsession to get them to do something they really struggle with. I taught my son to read using his "obsession"--electronics. He would look at the Radio Shack catalog for hours. He was especially interested in the lights. He was doing pretty well with phonics, but the actually reading books were too tedious for him, and he had cataracts that really hindered his ability to see little letters. I got a LARGE dry erase board and every day I would write an entire description of one of his favorite items for the Radio Shack catalog. He loved it. It held his interest and he'd really work at trying to get even the 4 and 5 syllable words. He reads very well now, although he does struggle with pronunciation and spelling.
Big colorful worksheets, flash cards, and anything kinesthetic is helpful.
Here are some examples from my own experiences with my FHS son of how their brains work that I hope will help you understand these special children better.
My son's obsession as I already stated is electronics. When he was 2 he could only say "mama" and "lala" (for light). Wherever we would to he would use sign language to ask permission to take a chair over to the light switch and repeatedly turn it off and on with a huge smile on his face.
When he was 3 he carried around a little tape recording playing and recording (mostly recording) tapes.
When he was 4 he loved the VCR. When we were learning shapes he kept saying "play" for triangle and "stop" for square, and "record" for the circles. I then realized that he was saying the shapes on the buttons of the VCR-- and that he was exactly correct every time.
When he was 5-6 he began recoring his own videos. He also couldn't seem to learn left and right. Then he started saying "fast forward" every time I turned right when I was driving, and "rewind" every time I turned left. At the age of 14 he still referred to left and right this way.
When he was 9 he hooked up a TV antennae to the back of an old computer I had given him and recorded television programs that he'd somehow received into the computer from the antennae onto some other program on the computer that I didn't even know existed-- and he'd play them back for us.
From that time on he just loved computers. He is now making slide shows from pictures he takes with his digital camera and making his own CDs and DVDs.
He also reads quite well and especially enjoys long, boring, detailed electronic manuals. And, he will remember just about anything he reads in them, like if grains get stuck in the grain mill and it is jammed and won't run, then just attach a vacuum hose to the openings and vacuum them out. OR the hour and minutes to set the time on the car are those two minute buttons just beneath the volume knob on the car stereo. And he's almost always correct.
At age 15 he is doing 3rd grade math, 5th grade language arts, and 6th grade history, science etc. (much of the later orally). He really struggles with math although he does enjoy it more using the calculator. He is just now getting the concept of borrowing and multiplying even though we've been going over it for years.
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