What do you know about Fragile X syndrome?

Question

My brother is going to marry a woman who's 3 year old son has the syndrome.

The little boy is attached to me. He is VERY loving and sweet!!!!

I am going to be his Aunt and he will be a part of my life hopefully forever.

On top of the fact that I love and adore the little guy, I am a teacher, therefore I am very interested in being a positive educational influence on him.

Unfortunately, I feel like he is ignored and left out of a lot of situations by his Mom and others. When I am with him, I spend every once of my attention on him.

We sing songs and I am very repetitious with him. But due to the fact that his Mom does not seem very involved with him, I do not have a role model to follow.

What do you know about the syndrome?

*I know I can research this on the internet, but I am looking for people's personal experiences. Not just what the "experts" say!*

Thank you VERY, VERY much for your help!!!!

Answer 1

Fragile X syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and mental retardation. Usually, males are more severely affected by this disorder than females.

Males and females with fragile X syndrome may have anxiety and hyperactive behavior such as fidgeting, excessive physical movements, or impulsive actions. They may also have attention deficit disorder, which includes an impaired ability to maintain attention and difficulty focusing on specific tasks. About one-third of males with fragile X syndrome also have autism or autistic-like behavior that affects communication and social interaction. Seizures occur in about 15 percent of males and about 5 percent of females with fragile X syndrome.

Many males with fragile X syndrome have characteristic physical features that become more apparent with age. These features include a long and narrow face, large ears, prominent jaw and forehead, unusually flexible fingers, and enlarged testicles (macroorchidism) after puberty.

This link might help ...... http://ghr.nlm.nih.gov/condition=fragile...

Answer 2

I don't profess to know a lot about this syndrome, as I have only worked one child with Fragile X, but I do know they are very loving and trusting little souls, and love interacting with others, who care to take the time to play with them, (the little person I worked with had a wicked sense of humour, and found the simplest things funny). Does this little fellow have wicked sense of humour?

I think with a good early intervention they can learn many life skills, and basic education, reading, writing etc, but finding their weaknesses and strengths and building on these, can certainly mean the difference in their overall education outcomes.

Are you close enough to his mother to find out if he is receiving early intervention, and what she is doing with him at home. If she has nothing set up for him, could you suggest a early intervention program, or find out the information for her. She maybe overwhelmed, and if your willing to help her with the little fellow, may help her heaps, especially with the impending wedding and dealing with her little boy.  

Many of the children I have worked with, who have been through early intervention programs, have better social and communication skills etc, compared to those who did not attend early intervention.

Good luck and I wish you all the best for you and your new family members.

Answer 3

I am a former nanny/behavior theparist to a young boy with Fragile X, and I also taught special education for 2 years before moving on to the classroom. There is a great article in this week's TIME magazine on the disorder and all that is being done currently. I suggest reading it and sharing it with the boy's family. The young boy I worked with was moderately mentally retarded due to the syndrome. Some are mildly affected, while others can be profoundly mentally retarded. Many of them exhibit autistic like behaviors (echolalia, handflapping, decreased social interaction, sensitivitiy to sounds and touch, etc.). Many respond well to behavior therapies like ABA (applied behavior analysis). It might help to provide the mother with information about how to obtain this help, if it is needed.

Answer 4

The number one thing to know about FX is it looks like they recently found a cure. Hopefully, in less than a year, they will be starting clinical trials on FX in people who have the syndrome. This bodes very well for a 3 year old!

There is a wide range of disabilities caused by too much of one protein. This effects some with the syndrome slightly and others more completely. Sometimes autism is a second diagnosis and ADHA and OCD also often co-exist.

My son, 21, is an incredibly sweet and loving young man. He is very verbal and very hyper. He can't read or write but he has many skills most don't. He has an amazing memory, remembering people and their names that he hasn't seen in 10 years. But the thing most notable is how adoring he is of those he loves, and there are many. He is loved by all who know him right back.

The Fragile X web site has lots of info: fraxa.com. It's great that he'll be getting more loving family.