Frequently Asked Questions From Parents of Newly-Diagnosed FHS Children
Some time back a mother who had just found out that her child had FHS asked me some great questions. After I had answered them, I saved what she had asked and what I had written in response, as I thought it might prove useful to others, and I hope it is.
But before I do that, let me offer you some encouragement. When we found out that our son Jesse had FHS we were very relieved. You see, we had been told by a doctor (I still have the letter) that he had another type of syndrome where he would have died between the ages of 3 and 5. (He was 2 when wrongly diagnosed.) We were so sad and at a loss of what to do. Then, he gradually got better instead of worse. When he was 8 we got the FHS diagnosis, and compared to so many other syndromes, it really wasn't that bad. So, some of the answers may sadden you (I hope not), but I want to be honest. And again, compared to so many other medical conditions, FHS really is pretty easy to deal with.
1. My child is currently non-verbal and I am wondering if and when he will ever talk. We have been in speech therapy for 2 years.
Most of the boys have a slower time talking than girls. Usually they learn sign language around age 2, then gradually between 2-4 become more verbal, although it is slow going.
Some of the boys really have a hard time and use a combination of sign language and squeals. Their families can usually understand them way better than everyone else.
2. What other cognitive challenges lie ahead?
The FHS children will usually be in special education for reading, math and spelling, and then mainstreamed for everything else. They will always be very short and a little different. (I think they are cute and sweet!) Our son is 22 and "graduated" from 12th grade at a 3rd grade spelling level and writes only in all capital letters. BUT, he can read and write and does pretty well, so we are proud of his accomplishments.
3. What are the chances of him being a "normal" 30 year old with a job, wife and kids of his own?
When they grow up, the FHS adults can hold simple jobs like volunteering for a thrift store or stocking in a grocery store. Only two that I know of have been able to get their driver's licenses, and they are very high-functioning for FHS adults.
None have ever gotten married or had children except for one possible case who had a child (which also has FHS) but is not married.
4. Do you have any other advice?
My best advice to you is to relax and be glad your child doesn't have something worse. The FHS children are cute and usually well-tempered. They need lots of food and snacks so their blood sugar levels don't drop (then they behave badly). They sleep best if the house is quiet and a fan is on to block out any noise. They need naps. (My 21 year old still takes a nap.) Their bodies get tired more easily and some of them (mostly younger boys) don't store any fat, so they are easily fatigued.
They need lots of one-on-one time with their moms and family. This is how they learn to use sign language daily and eventually speak. While a speech therapy session once or twice a week is good, practicing every day at home with mom does WONDERS for their sign language which will lead to speech once they figure out they can communicate.
While they seem to benefit from foods like tuna and mayo (to help brain myelination) and "power shakes" with soy protein, amino acids, and vitamins, the growth hormone shots are not recommended by me. The long-term results are NOT at all successful. They will grow a little bit initially and the parents are all happy, but then after years of shots they end up still as short as they would have been without them (most FHS adults are 4 foot 6"-- 5 feet tall max.) In the meantime they have gone through years of shots, extra hormones being added to their bodies which seems to mess things up behaviorally and otherwise (many parents have had complaints about this.) The doctors suggest GH therapy (growth hormone therapy) because it is all they know to do. The children are short, so they figure they will do that and the children will grow a few inches, the parents will be happy, and they (the doctors)
will have done something to help. At this point there is nothing the doctors can do, and in my opinion, doing GH therapy makes things worse for the child with no long-term results.
Can I also get a copy of the packet for teachers?
The information is on this website under the headings "Schooling Notes" and "For Therapists, Educators, and Parents". Feel free to print these and share them with anyone whom you believe would benefit.
If you have any other questions please check out our informational website at www.floatingharborsyndromesupport.com
or contact us at littleflock7@gmail.com.
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 intelligent 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 next 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 lost 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 recording 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.
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 systems; 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 or email me at littleflock7 at gmail.com.
