Sean is a sweet guy.
This page is dedicated to my son Sean who has been diagnosed with Fragile X Syndrome. I hope that you will find encouragement and help from the information and resources listed here. If you need to talk with me just click on this E-mail link and send me a quick note. I will respond quickly.
Sean 2003 - Where are we today? Well Sean had his 9th birthday this year and is turning into quite a little man. He seems to be maturing more and more each day. We just had a meeting with Sean's teacher and she is very impressed with his intelligence. She is moving him out of the Pre-school curriculum (shapes,colors,numbers,letters recognition) and into a much more academic curriculum. Writing and reading is a high priority for her and she thinks Sean will really take off this year. She did a Phonics tape with him while we watched and noticed that he paid attention to her the whole time. We talked a lot about how much he is learning. She discussed the MCAS with us and we talked a little about what will be tested. Right now he is getting real home work that I do with him. A lot of it is Hand-Over-Hand but he identifies his letters, numbers, shapes and colors. Now we're actually starting him with writing. I'm trying not to take so much control and let him do the drawing.
His interpersonal skills are developing too. His teacher is so happy to see Sean developing a friendship with one of the other students in his class. She described how they seek each other out. She told us that Sean and this other boy were having a real conversation in the van the other day. She said they went back and forth asking questions and answering each other for several minutes during the ride. The teacher was so thrilled about their interaction. How I look forward to the day when I'll be able to talk with him like that. I think Sean is really getting more personable. We really want to help him interact with other children. We're also looking to get Sean interested in games, Lego blocks and Lincoln Logs. I want him to start playing with toys. He's never shown a great deal of interest in toys. He likes his videos and computer games. I've also started to take him on in wrestling matches. I think he really likes that.
♦ Robert T. Bitgood - September 30, 2003
Well Sean's moving up in his BIP class. He is getting bigger and being with the bigger kids should be a good move for him. He's being moved up even though the school year isn't finished yet. Part of the reason is because of budget cuts prevented the school from hiring a replacement assistant for Sean's old class. Sean is transitioning up over a couple of weeks until he will be spending the whole day in his new class.
Although Sean seems to be taking the transition to his new class just fine, we did not have any success getting him to take his medication. We no longer give it to him because is was causing so much stress that I was loosing it. I would take him 15 minutes to take it with applesauce and some days he wouldn't even get it all. He wouldn't take the capsules at all. On top of all that, we were not even sure that it was helping him at all. His teacher never was able to see any improvement in his attention but did notice that he was more stressed out. It wasn't until we took him of the meds that she noted an improvement. Now I know that for some kids the medications do wonders but for Sean it was causing more bad than good. In a way I'm glad because I never really wanted to give him meds anyway.
♦ Robert T. Bitgood - March 19, 2003
Well, it's 2003 and it's time for something new. We got a note from Sean's teacher at the BIP. She made a hint that it might be good to ask Sean's neurologist about starting him on medication to help him focus at school. Like so many other Fragile X children, Sean's attention span is limited to activities that he likes to do. When they sit him down to do real work he will only sit for a short time. I can just feel the frustration of the teachers, wanting so much for him to progress and yet being held back by the short lengths of time that he could stand working on an activity.
The neurologist wrote a prescription for Adderall XR. After reading up on this I was all the more nervous. I never wanted to put Sean on any medication at all, unless it was really going to help him. Some of the information I read was pretty scary. But after consulting with my Internet groups, and getting some positive feedback, I'm ready to give it a try.
Now we just have to figure out how to get Sean to take it. It come in capsules but he can't chew it. He won't swallow the capsule so we'll have to break the capsule open and sprinkle it in some soft food like applesauce or yogurt. The problem is, Sean doesn't eat either of those and doesn't use a spoon very well. Even if we try to feed him with the spoon, he doesn't open his mouth far enough to get it in. I just hope we don't stress him out too much and he will get used to taking the medication quickly.
One other fortunate thing is that we applied for Mass Health Insurance for Sean. This will cover all the extra cost of medical visits and prescriptions. This 30 day prescription costs $100 but after my insurance I didn't pay anything. We don't have to pay the CO-payments and it will cover a lot of other things too. We have to pay an extra premium but there's even a program that will reimburse me if I use my primary insurance before I use the Mass Health.
♦ Robert T. Bitgood - January 13, 2003
Sean writes while he sits at the computer.
In a word, Challenging. Fragile X Syndrome has been said to be the single most common inherited cause of mental impairment. The X chromosome that causes Fragile X Syndrome has a defective gene. A gene that normally produces a protein essential in the development of neurons in the human brain. In a Fragile X chromosome the production of this protein is shut down and the effect in the body are far reaching. From what I have read on it, as many as 1 in 2000 boys could be effected with mild to severe mental impairment and 1 in 4000 girls could be effected with average IQ or learning disabilities. Women can be a carrier and not even know it and the condition may go undiscovered for many generations.
Sean gets visual feedback from reflections and shadows.
When Sean was born 2 things were mentioned about his physical appearance. The doctor commented about the above average size of his head and also that he was a floppy baby. I imagine more so that other babies. As Sean began to grow we became more concerned about his “floppiness”. He could barely sit up on his own at 9 months and didn't seem to be interested in crawling. When he was 1 year and 4 months old we decided to take him to a Neurologist and an Orthopedic Specialist. It was determined that he was definitely delayed but there was no clear diagnosis. We started Sean in an Early Intervention program and hoped that with the extra therapy he would progress and overtake his delays. And he did progress, but he did not over take. It wasn't until he was 5 years old when we found out through a blood test that he had Fragile X Syndrome. That was in October 1999. He is almost 7 now and his progress is like watching him grow in slow motion. He still has the body of a normally developing child but his skill level only grows a little at a time.
Sean is a real fish when it comes to the pool.
Sean is delayed in both speech and motor coordination. He can run and climb and wrestle. But when it comes to using utensils or doing crafts or drawing, he will only be able to perform the easiest of tasks, and that with a very rough degree of accuracy. He also has sensory issues that inhibit him from focusing on any task for more than a few minutes at a time. The only exception is when he gets on the computer. This is a great tool because he can manipulate the mouse to choose the programs he wants to use and he gets a lot of language from it. I have found that the Living Books series produced by The Learning Company, Inc are especially good for Sean and he loves them. I also use Kiddesk by Edmark. It a Alternative desktop for young children. It provides Sean with icons for all his favorite programs but protects the operating system. It allows Sean to use the computer unsupervised, even though he will come ask for help with some of the programs he plays.
His speech is almost indistinguishable. He has many clear words but he speaks in broken language. Usually no more than three or four word sentences. The floppiness he had at birth is now noticed by his lack of awareness of where his body is. His joints are hyper extensible so he is always fighting gravity. Trying to put his coat on is a real chore. He can't stand still but instead wobbles in place. He frequently will seek out reflective surfaces, anything he can see himself in, or a place where he can see his shadow. Then he will stand there and mumble songs and clap and have a great time. One thing that we've just started doing is taking him to the pool. We try to get there at least a couple of times a week and Sean loves it.
Sean likes the snow.
Sean's demeanor, for the most part, is happy. Sometimes at night he'll wake up and just start laughing and laughing, of course he can't tell us what the joke is. Sometimes, usually when he gets over stimulated or doesn't get what he wants, he'll get very distressed. Changing routine or load noises can get him upset too. Sunday morning at the our Kid's Kingdom Bible classes can be a real source of frustration for us. Maggie and I switch off being Sean's aide. We try to engage him in as much of the program as we can. But a lot of what they expect the other children to do is far too advanced for Sean. I find that at least once every time I'm in there with Sean I have to explain why he needs a piece of tubing to chew on. We bring other activities for him to work on and try to help the other teachers grasp the complexities of raising a child with special needs
When we first found out that our second child, that is Sean, was going to be a boy, I was so proud. I finally felt like I could relate to the men I my life, the leaders of our group that would get up there and describe what kind of things they would do with their sons. Baseball, Football, Fishing, Camping. Now some of those things still seem far away. Indeed I would love to just be able to have a conversation with my son to find out what he's thinking about when he wakes up in the morning laughing his head off. For now I'm just going to enjoy him where he's at and let God worry about the future. Will Sean be able to live on his own? Will he get married and have kids of his own? Will there be a cure for him? Only God knows. I know that God wanted us to have Sean so we could love him like no one else could. The poem below was given to us be one of Sean's Therapists.
Jason is Sean's cousin. The son of his mother's sister.
This is Jason, Sean's cousin. He was diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) and mild retardation when he was a child. After Sean was diagnosed with Fragile X Syndrome, Jason, who is about 21 now, was also tested and the results came back positive. Many children may have Fragile X but don't know it because they were diagnosed with something else.
♦ Robert T. Bitgood - February 1, 2001
Sean in his class.
Sean has completed his second year of Develop- mental Kindergarten. He will be turning 7 on July 18 and is becoming quite a little man. There is a boy in his class named Billy who has Downs Syndrome. Billy tends to get a little pushy at times but that's not a problem for Sean. Sean's got some real bulk to him and can hold his own in a wrestling match. I was able to go on a year-end field trip with Sean's class to a wooded area where the kids got a chance to walk through the woods. They did very well and found great pleasure throwing rocks into all the water we found.
He likes throwing rocks in the puddle.
Sean will be moving on to the Behavioral Intervention Program (BIP) in Arlington, MA in September. This program runs all year and will be great for Sean. Sean's Therapists have been saying for some time that they would like to see Sean in a year-round program. He'll still be getting picked up and transported to the school but his day is going to be a little longer than it was this year. I hope that his ride in this year will be better than it was this past year. The boy that Sean shared the bus ride with was often very load and Sean cannot tolerate load noises very well. Our contact at the DMR surprised us with a request for our wish list for therapy items for Sean. We have been trying to duplicate some of the work that Sean is being asked to do at school and now we will hopefully get some items that we can use with him.
Sean's 2002 class photo
Fragile X Syndrome Information
♦ Robert T. Bitgood - July 4, 2001
Sean had a great summer. So much less stressful than the better part of this past school year. It was so nice to see him happy to get on the bus. He has now started the new school year and the word from his new teachers is that “he fit right in”. He's attending the Behavioral Intervention Program (BIP). It's at the High school in Arlington. He has a very long day. He starts at 8:30am and is released at 3:30pm. The bus picks him up and drops him off. The class goes to the pool once a week and we take him to the pool at least once a week also. Because of that, Sean is learning to swim now and likes to float on his back. Joe at the pool is really great with him. Sean's class also goes to a restaurant once a month for breakfast. Their teaching the kids to order their own food. He also has Music Therapy, which he really gets excited about. And in another month, I think, they will begin a toileting program with him. It will be great when we can get Sean out of diapers. Right now he doesn't show any interest in using the potty.
♦ Robert T. Bitgood - September 27, 2001
Belmont Citizen's FunFest Photo
Sean made the front page of the Belmont Citizen for February 7, 2002. Children play under a parachute at the 10th annual Funfest at Wellington Elementary School Sunday February 3 Sponsored by the Belmont Special Education Advisory Council (BSEAC). There were 35 families with special needs children participating at the FunFest. The activities were arranged by Mr. S. famous for the birthday parties he does. There was wheelchair races, shooter boards, rope netting to climb and lots of basketballs. Sean especially liked the parachute games and being pushed around in a wheelchair. There were also crafts and sing-a-long activities. The cafeteria was decorated for Valentine's day and pizza and ice cream were served. Sean liked the pizza but doesn't go for the ice cream very much.
♦ Robert T. Bitgood - February 13, 2002
Sean knows his way around the computer.
When Sean is home he spends a lot of time either on the computer or watching videos. This is a list of his favorite programs and shows.
Favorite Computer programs:
Sean's Favorite Videos:
Sean likes to stack... his videos?
And fortunately NO Teletubble videos.
Sean likes trains, and he has train videos too. Thanks Uncle Donald.
Sean likes trains too...
♦ Robert T. Bitgood - September 28, 2001
Mass Department of Mental Retardation
The Federation for Children with Special Needs
Behavioral Intervention Program
Belmont Special Education Advisory Council (BSEAC)
Green Pool at the Fernald Center
200 Trapelo Road
Waltham, MA 02154
Phone # 781-894-3600 ext. 4058