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.
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.
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.
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 working in a grocery store or something like that. 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 but is not married.
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 boys) don't store any fat, so they are easily fatigued.
They need lots of one-on-one time with their moms. This is how they learn to use sign language and talk. While 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, then after years of shots 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 (lots of parents have complaints about them). 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.
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 boys) don't store any fat, so they are easily fatigued.
They need lots of one-on-one time with their moms. This is how they learn to use sign language and talk. While 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, then after years of shots 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 (lots of parents have complaints about them). 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.
