My Experience Living with Fragile X

Posted on July 22, 2011


Today is fragile x awareness day, and i’ve been exploring what that means to me.  People are writing what their experiences are living with fragile x….so here goes.

I dont have Fragile X Syndrome…. But I have lived with it my whole life, in my Brother. This is a very sensitive topic for me.. not one i write about often – somehow the abortion i’ve had, discrimination i’ve seen and experienced, and dealing with oppressive systems are all easier to deal with and discuss than having a loved one with fragile x.  So if I’m all over the place bear with me…  Even watching the youtube videos the frax foundation puts up for holidays (Awareness Day Video Here) makes me cry really hard.  One of the main reasons is because i see these pictures of mostly children, and in general they look happy.  I compare that to what i know of my brother and it devastates me.  I don’t think he is very happy.  And I don’t know what to do about it.  I used to feel sad and guilty because I was pretty rotten to him growing up – my college entrance essay was about this inner struggle, and it was also published in the fragile x quarterly back then.  Now i feel rotten because I don’t think I’m doing enough, and I don’t know what to do.  I don’t know how to make a difference to him personally and to the advancement of FraX awareness at large.  I talk to Travis on the phone, and we skype sometimes.  But I think one of the main reasons I get homesick here in hawaii so often is because I miss my brother.  So much.  I want to be there for him and take him places and teach him what I know in ways he can understand and interact with him in ways nobody else can.  I just want to be a bigger part of his life.  My parents are good parents, they did not always have the wealth of information and resources that is available now almost 10 years after they discovered the cause of FraX and it was hard on them.  Now they are struggling to survive.  But they have been amazing parents, fighting with doctors and schools to make sure that he has every thing that he needs.  Our mother is a warrior woman, a total champion for him.  But I think parents interact differently with their children.. more hierarchical.  I think it took me moving out on my own for them to *really* start treating me as an equal.   So what interactions does my brother have where he is treated as an equal now that i’m gone? When is he not patronized? Again, this is NOTHING against my parents or the other adults in mine and travis’ life- i have nothing but love and respect for all them.  But interactions and relationships are different and that’s just a reality.

I also struggle with wanting to be involved in the movement.  Today I called my mom and asked if she knew what kinds of jobs were available.  It would be quite a leap from social justice, but at the same time not too far because they need advocates and community organizers and people who can do events, and my passion might be even more intense if that’s possible.  I wanted to start organizing and advocating here… but really i’m just trying to survive as well.  I’m one catastrophe away from having to move back home because of financial reasons (living in hawaii is super expensive, and social workers don’t get paid very well anywhere) and on top of that i haven’t yet mastered the art of being super productive in my time away from work because of how much energy work takes out of me.  On my off time I’m recharging.  But I know I need to do something.   I want to be a part of the movement because I know there are so many families out there with loved ones who are undiagnosed. I want to advocate for mandatory blood tests for kids diagnosed with autism.  I want to build partnerships with autism organizations.  I want those families to have more and better and current and innovative information and resources than my family had, so their loved ones can thrive from a young age.  So they can be prepared and as equipped as possible to deal with the barriers that lie in front of them… like dealing with school districts, for example.  And I wonder how many young people are involved in FraX work… if siblings don’t take the torch who will?  Also being involved more intimately in the community will allow me to better understand new therapies and best practices for my brother, because one day i will be his caretaker.  Of course he will be established in a group home setting by then, but i’m not going to entrust my brother wholeheartedly to any institution.  I want to be informed so I can work together with helping professionals to give him every thing he needs to thrive.

I wonder if he’s ever been asked what he wants to do when he’s older?  Has he experienced enough diversity in his life to have interests beyond tv shows?

I also have hope.  Gene mapping and medicinal therapies designed to get to the root problems of FraX have been taking off… in fact my brother is in line to be a part of a study with new medication.. so far in trials it’s been pretty successful.  Who knows where medicine will go in the next ten, twenty, thirty years.. ten years ago they didn’t even really know what caused fragile x.  So I have hope that there will be breakthroughs in medication that help the proteins and receptors… I don’t want to say that I hope one day he will be “cured” because I don’t think there’s anything wrong with him… I just see how frustrated he gets when he cannot share an idea, or how he acts out when he wants to be a part of group discussions but cant participate the way he sees everyone else.  It breaks my heart.  I do want to be able to ask him “what did you do today?” and have him tell me instead of saying “I don’t know” because communicating is hard and frustrating for him.  I want to see him happy, and enjoying life instead of being neutral or angry or anxious. I want him to have friends and relationships outside of our family, and engaging with the world around him. I want to see him thrive.

Why is this so emotional for me? I don’t quite know.  But I’m sitting here writing this crying.

for more information visit the national fragile x foundations website