Fragile X Syndrome

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    Relapsed Onced Again 😭😭

    <p>Relapsed Onced Again 😭😭</p>
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    Today, I quit therapy. I was the failure. Plus the therapist did not want me either. I need therapy, but it is too hard for me.
    #Selfharm

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    my son with special needs

    my son has fragile X syndrome. some people don't know what that is, form of mental retardation it varies in each child. my son is now 30 years old. he was diagnosed with it at the age of 3 and 1/2

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    I shouldnt have to explain my child's diagnosis

    I try my best to ignore it but it’s just so hard to ignore. My oldest daughter used a pacifier until she was a little over three years old, and my youngest daughter was using a bottle until she was two and a half years old. You would see the dirty looks people gave me because of it, I would go on Facebook and see posts saying that if a child over a year old is still using a pacifier or bottle it is because you are a lazy parent. Both my daughters use to struggle going out in public especially my youngest daughter she would be extremely overwhelmed and inconsolable and here they would come again the glaring looks, the whispers and even some brave comments made out loud about how my children are spoiled. But the one that really gets under my skin the most is the looks my oldest daughter gets when she hand flaps, or starts humming and shaking her head back and forth, the looks my youngest gets when she is pacing back and forth or humming.

    I remember being at a birthday party with both of my daughters, it wasn’t anything big it was at a friends aunt’s house we were going to have lunch and cake and that was it. I thought this would be low-key enough for my daughter to handle but it wasn’t. The second that we got there my children were trying to leave and this got worse the more people showed up. My oldest didn’t understand why every cup at the party wasn’t for her to drink me and her shared getting dirty looks from every person whos cup she touched. I remember getting the worst look from a fellow mom when my daughter had picked up the sippy cup her son had put down. My youngest was so overwhelmed by everyone and everything that the only thing that calmed her was me holding her 35lb self the whole time we were here. Anyone who was at this party and paying attention to us could see I was trying my absolute best to carry my youngest and keep her calm while trying to chase my oldest and keep her from drinking other peoples drinks. When it came time to eat we sat that part out, but not peacefully as you can imagine because everyone always has something to say. I remember being asked why my children weren’t eating I answered sweet and simple my oldest ate before we got here. I was hoping this was the end of the conversation but I knew there was more coming. “Well what about her (pointing to my youngest in my arms) don’t you feed her, what’s the matter don’t they eat?” That’s when I had snapped. I ever so rudely said my youngest doesn’t eat solid foods yet, she has low muscle tone in her mouth which we go to feeding therapy for but thank you for you concern. Then there it was *ding* like a little light bulb had gone off in this strangers mind that maybe they shouldn’t have opened their mouths and said the things that they said, but they did!

    That little *ding* oh sh*t moment is how it always happens. When people make these comments, and give these looks, when I feel the need to defend my daughters actions and my actions, when I explain our situation and struggles it always happens like that. When I go into detail about how both of my daughters not only have a genetic disorder called #FragileXSyndrome, but they also have Autism, when I break down our therapy schedule that takes up more then half of our lives, and how and why certain things are a struggle, when explain to people my daughter can’t answer your question because she doesn’t understand it, or does not know how to answer, or when I explain that my daughter wont hug you or kiss you because she doesn’t like affection, that’s when it all changes. That’s when the looks turn from judging to understanding, and then to pity. That is when I start hearing oh my god it must be so hard, you’re such a strong mother, the back peddling and what people believe to be compliments go on and on. But where was all of this understanding before I told you my story? Why before I explained myself was I spoiling my children but now that you know I’m caring for them. Why did you think I was a bad parent, but now I’m incredible on your eyes?

    I do not want your pity, I do not want your compliments, or your praise. I want to be able to live my life without being judged as a parents about things you know nothing about. I’m sure you’re thinking I could just tell everyone our situation and then I wouldn’t have to deal with the negatives, but I shouldn’t have to explain our story in order to not be judged. You never know what any parent in dealing with, you never know what any child is going through, so you shouldn’t be commenting or judging anyone. I’ve been told the longer you deal with the ignorant comments the less you care about them. But I don’t think that will ever be me, I will always stand up, fight, and defend what I feel is right, and what I believe. My daughters aren’t here for you to judge and they aren’t here for you to have pity on, they are here to be children to play, laugh, and love and that’s what they will do no matter what you think about them.

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    I have fragile x and Im going through the pre menopause. Can you anyone tell me what helps with the moods swings I have all the time.

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    I have a 13 yr old non verbal grandson my daughter was always afraid to have another child well she did , and this little guy started to look like he was having problems also so they decided to do testing the thirteen yr old was a carrier to fragile x the baby is s full mutation , Fragile x apparently no one new anything about till 1993 it does not skip a generation my daughter got tested she was a carrier my husband was dead so I was tested I was a carrier I never had any sons I had four daughters . Out of my hour daughters two were tested and both were carriers . When you see the stats on autism the boys were always do much higher and I was always wondering how can that be ? I think the reason why is because fragile X shows in boys the boys show symptoms the girls generally do not I think this fragile x is the missing link we’ve all been searching for , Drs still don’t no that much about fragile X unless they are genetic Drs. What are your thoughts ? Mass from what I’ve been told is now testing pregnant moms , Thank you Diane Kohls