Fragile X Syndrome Member Introductions


#21

Hi there David,
Thanks for the invitation. As you know I am in your FX group, but mainly just lurk there. My husband and I have 2 children both with fragile x. They are our angels, our everything.
I will probably be quiet here as well, but wanted to show support for you here. Thank you again and please feel free to email anytime. Julie.


#22

I work for a camping program in Ohio for special needs people. We have served several people with Fragile X syndrome


#23

Hello I am proud parent of one daughter who is nine. I have two careers, Rehab and medical. love them both and I have been married to a man for seven years.


#24

Hi, my name is Carol and we have a 16 year old son With FX. We are looking for other parents of boys or girls around the same age to share stories and info.


#25

I thought my 3 year old son Joshua might have Fragile X. Test results came back negative so we are having him screened for Autism. I should know by May 10th exactly where he is on the spectrum.


#26

Hi, My name is Kristen. I have a 4 year old son with fragile X syndrome. We didn’t know about any of this until about a year ago. He was not talking and they ran a lot of tests, and this is what we found out. I also have a 2 year old daughter who is unaffected. I love talking and hearing from other people who are going through the same things we are as a family. A lot of people just don’t understand.


#27

Hi, My name is Lisa. I have a 5 1/2 yr old girl (Kamryn) who has fragile x. We found out about fragile x when kam was 2 1/2, she has a full mutation. The genetic doctor tells me shes mild-but that doesn’t mean much to me. The whole thing is really hard!! She only has a vocabulary of about 20 words, and there are sooooo many more issues that are hard. I’d just like to keep learning about fragile x and connect with some people who can relate to my family and issues.


#28

My son Michael is 17 & has FX Syndrome. I am interested in how other families are dealing w/transition and what to do after school is done.


#29

Hi
My 17yr old son is affected by Fragile X, my other son is a ‘gray area’ carrier and I too am a carrier of course.


#30

Hello, My name is Sharon, I am a mother of two 18 and 5 1/2 years of age. My son, Tristan age 5 1/2 has always had devvelopment Problems and for the past two years he has been seeing a speech therapist as well as seeing a Physical therapist of some sorts, I say that because I live in Germany now and am unsure of what it is called in America. Anyhow he is now being looked at for his “problems” in a special center here and just had the Kaufman_ABC IQ testing done and did not fair well at all, which did nto schock me. Concerned how I can help him and what may be “wrong” I am always reading things online and stumbled across info on the Fragile X Chromosone. AFter having read all about this so many things fit my son as well as me having a LD myself which was not found out till tested while in college… All the years of struggling I had in school being labled “stupid” “dumb” lazy etc… because of my lack of math skills, ie; always in general math etc as well as reading comp classes, never “normal” english etc… all the way through my learning years… anyhow so many things just seem to fit him and myself that I want to learn more (In English) so I cna better understand and am going to see about having my son tested for this to know for sure and just wanted to talk or hear others who have the same things going on in their lives as we do in ours… sorry am long winded! Thanks for listening and I hope to learn about here and know that I , we are not alone in our struggle
Sharon


#31

Robert Miller
National Fragile X Foundation
PO Box 190488
San Francisco, CA 94119-0488
USA
1-800-688-8765
www.FragileX.org


#32

Hi,
My name is Rita, and I have two boys with Fraile X Syndrome. I am interested in connecting with other parents who deal with this and the issues associated with fragile X. I hope I can contribute in a meaningful way, and I look forward to being a part of this group.


#33

I have three kids–two boys with fragile x syndrome, and one girl not affected. I write about my life, and my kids on the blog: www.quiltclogmom.blogspot.com – and love to connect on-line with other people going through the fragile x journey–I’ve never actually met another mom going through this–so it just helps to connect however I can.


#34

My 11-yr old son, Avery, has FXS and is severely autistic. I am interested in hearing about other parents’ experiences and successes in behavioral modification, sibling issues, toilet training, school issues, preparing for our childrens’ adulthood and integration into the neuro-typical world.


#35

Christine

My stepdaughter was diagnosed with Fragile X when she was about three years old. She is 12 now and formerly diagnosed with ADHD-Inattentive as of this past spring. She has begun ADHD meds and I am interested to hear about other families who might have/be going down this path and advice/perspectives on this topic.

My husband and I also would like to hear from others regarding how other families have dealt with their children becoming older and choices they’ve made as far as placement when their children reach 18 and older… employment, living choices, etc…

Thank you!!


#36

Hi. My 3yo son has FX mosaic. I’m particularly interested in treatments on the horizon and the best available methods for educating him. Mike, Arlington, VA


#37

My name is Rose and I Have a son with pre-mutation Fragile X. And I need to know whether or not it is normal behavior to continually saying they want to kill themselfs and will try anything to do it.


#38

My youngest son Avery was diagnosed with Fragile X at age 4.5 years as well as ASD. He already had a rare bone disorder called OI osteogenesis imperfecta


#39

Not sure if I am doing this right but here goes.

Avery Update (4.9 yr old boy with Fx)

On Thursady we went to the CDL(center for developmental learning) at UNC for a 3 month follow up of his diagnosis of Fragile X and ASD. The fellow came into the playroom and started to ask us questions and was in shock with what Avery was doing. Avery was really happy and inquisitive and interacting well with her. We knew that he was a different kid but we needed someone who hadn’t seen him in 3 months to show us how different he was. She quickly went to talk to the attending and they came back and said they wanted to retest him. The tester started really low and he was whizzing through her tasks , she was really confused because he just got everything fast like it was too simple. By the time she got to the right level he was burnt out and I saw him purposely give the wrong answer to something that he knows so well and when I said Avery(in a mad voice) he just smirked at me like he was saying “I know how to stop this nonsense”. We were there until 1230 and then they told us to come back at 145 to get the results and conference with the attending. This was supposed to be an in and out , how you doing visit and it turned in to the marathon reeval.

THE RESULTS: (in 3 months time)

Avery has increase his cognitive level by 12 months, he has increased
his fine motor by 6 months and his gross motor now is up by 18 months
(3 year old level I think). His language scores went up by greater
than 12 months. His adaptive scores are much higher and he has
pretty much lost all his autistic features. They were so happy and
shocked. So are we. They told us that they have never seen a
change like this and never have felt the need to retest a child 3
months into a treatment plan.

Avery is getting Prozac for anxiety which has allowed him to open up
and learn and interact in a way he was unable to do before. he
now has a wonderful OT that is very attuned to Sensory integration, a
great therapeutic listening program and parents and an Au Pair that
are working as a team with the teacher and therapists. The TEACCH
system(work stations) of learning is working well and we can
implement in all areas home and school. He also loves the computer
and has a computer program that acts as a trainer for his educational
goals. I am hopeful that we can continue to make this kind of
progress and he can reach the highest level he can.

Sorry so long but as you can tell ----we are very very excited!

Mary

mom to 5
Avery and Alexi have OI and Avery also has Fragile X/ASD both age 4.9


#40

I have two sons with Fragile X syndrome and am in the midst of developing an online support group for people with Fragile X and their families. It will be an australian based group, but anyone is invited to log on and join. I would like to join this community as well… and maybe talk about what I have included on the site I have developed, how we can support each other and also direct people to appropriate supports and professionals.