Fragile X Syndrome Member Introductions


#1

Please take a moment to introduce yourself to the community. Everyone here has something to share about Fragile X Syndrome. For the discussion boards, we ask that you keep your full name and location private.


#2

Life is about health, family and friends, but sometimes its hard to keep focus on what is most important


#3

Founder of the TransGlobal Health Community Center at http://transglobalhealth.com


#4

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused:


#5

Iam an architect with a home based consultancy.My husband is in Sales.I have two kids-daughter-8, son -6.My son is positive for fra-x.We have come along way and My son,Dhruv has improved remarkable thru a combination of strategies.


#6

I have two children with FX ages 7 and4


#7

Hello, I’m Ana aka Tonks from Chicago. Yes, Tonks is due to the character from Harry Potter as my friends from HS call me that now as they remember when I was in HS I had pink and purple hair occasionally but not the two colors at the same time. I am the parent to an autistic(asperger’s) boy and a nanny to a 12 yr. old Fragile X boy and I joined the group to gain some insight, help, information, guidance, and just straight conversations w/anyone else in the community. I didn’t get any replies to a couple of my posts previously, so became a lurker and I’m hoping I can have a better chance to have an occasional convo via the group.

Thanks for letting me join and blessings to you all!
Tonks


#8

Hi,
My son Marc, age 5 and 1/2 has fragile x (mosaic form). I’m interested in learning about other peoples’ experiences with their children and sharing information. Thanks for creating this forum!


#9

I am a carrier and my youngest daughter is full mutation but went to college etc. Her 8 year old daughter is full mutation. twins 5 yrs girl is ok and boy is fully affected fx.


#10

fragile x carrier?


#11

I am a single parent of three children. A daughter of seven who has Fragile X (mosaic) and Asperger syndrome, a five year old daughter whom is unaffected and a three year old son who has Fragile X (full mutation).


#12

I've noticed the terms "mosaic" and "full mutation."  What does that mean?  The young man I take care of(he's 12) seems to have somewhat high functioning "autistic tendencies," but still displays some of the physical features(the ears and high forehead).  He's currently medicated to help him with his mood swings, he listens pretty well(there's a pattern of repeating I've noticed) and responds to a lot of the methods I use in regard to...everything!  We have rules and if they're broken, he(along w/the other young boys I care for) will have points taken away and possible naughty corner time out.  They seem to respond well to the points system for the most part(except the youngest who is AD/HD but that's an entirely different group) and he get particularly excited when he's earned that prize for said amount of points, so he continues to behave well for the most part(of course, there are times when he doesn't behave but then again, he's just a kid).  I treat him like a normal 12 yr. old boy but w/a bit more understanding, patience, and basically a walk or two on egg shells and he responds quite well with that.  Although he has had a meltdown or two and I make him sit with me, we hold hands, I tell him to look into my eyes, and then we do breathing exercises(in through your nose, out through your mouth) and then we count to ten slowly adding an animal of his choice in between(I'll ask him, "what animal would you like to count today?" and he may shriek or just tell me "elephant" or "dolphin,"  whatever he's thinking of) then, as we count, we say it together, ie, "One dolphin, two dolphins..etc..." and when we reach ten, he's mellowed out a lot.  He feels quite guilty after his outbursts, cries and hugs me constantly telling me how sorry he is and he hopes I don't hate him and I hug him back and remind him that he is loved and not to say hate unless he's talking about bin laden(joke here..haha) and that I do not hate him and we just need to mellow out a bit.  His communication skills are improving so much as when I first started to watch him and he'd have frequent meltdowns(most likely due to his regular schedule and caretaking being interrupted so abruptly) and we started the "yoga" as I call it for him.  I always ask him to tell me why he's panicking or upset and he wouldn't say anything except cry in my neck.  For a good amount of the time he will tell me what's upsetting him.  When I watched him and the other three last week I wanted to go to Good Friday Mass with them but he started to panic, had a small meltdown, we counted chickens this time and I asked him if it upset him or scared him to go to church and why...he said church is too loud and there are too many people there and it scares him.  So I told him we could stay home and he hugged me again and went off to play with the younger boys.  I'm basically just mentioning how these methods help in case anyone else wants to try them.  They may not work overnight(as in our case, they didn't work overnight) but it takes patience and perserverance(sic?) and it will work most of the time.  Plus, it's a great way for both parent and kid to calm down, wouldn't you say?

 

OK, enough babble from the nanny.  God bless(to whom it applies), take care and have a wonderful day everyone!

 

Tonks from Chicago


#13

I am a father of two sons with Fragile X who are now young adults. My wife and I have been involved in the community for years. We are not chasing a cure nor any longer convinced that toilet training will not occur. We are interested in quality of life issues for adults with developmental disaibilities including housing, employment opportunities and support, and community based programs.


#14

Tanya
Mommy to:
Taylor Nichole, 5
Gavin and Garrett, identical twins.

Garrett has high functioning autism, severe Expressive language delay, and probably Fragile X. Waiting for genetic testing to come back.


#15

step mom to two FX boys, 8 and 9 years old
mom to 14 yr old daughter, 13 year old son, and 20 month old son.


#16

17 year old son w/Fx 15 year old daughter w/out


#17

My name is lisa 35yrs,married with 2children a girl of 6 and boy of 9yrs.Our son has dyspraxia,dyslexia,broard learning difficulties,hypermobility,visual perception problems etc… he attends a normal middle school with aid of a statement and 1 to 1 help.We are also awaiting test results for diagnosis of ??a genetic condition.


#18

My name is lisa 35yrs,married with 2children a girl of 6 and boy of 9yrs.Our son has dyspraxia,dyslexia,broard learning difficulties,hypermobility,visual perception problems etc… he attends a normal middle school with aid of a statement and 1 to 1 help.We are also awaiting test results for diagnosis of ??a genetic condition.


#19

My younger brother is 31 with Fragile X. I am now his legal guardian and I am honored to have this responsibility


#20

Hello,
Just seeking to get more information about Fragile X, Rett’s, and other rare disorders. We have custody of a 6 yr old girl. These possible diseases/syndromes (amongst others) have been mentioned. We have an appt with UT (Univ. TN) Genetic Lab soon. This child has also been neglected & abused, which complicates diagnoses.
Thanks!