Thursday, March 5, 2009

The conspiracy

There seems to be a conspiracy in the Fragile X care community to keep
parents of Fragile X children from meeting adults with Fragile X. I
haven't met a single one so far. Is it just too soul-crushingly awful
for our tender sensibilities or something? We keep getting this BS
schpiel about how "everyone is different" and "you can't predict what
your child will be like". This is true to an extent, of course, but
I'm convinced that someone somewhere decided that new parents of
Fragile X kids should be kept in the dark about what their children
might turn out like (barring a cure or dramatic improvement in
treatment). Of course, I haven't actually gone and sought out a
Fragile X adult on my own, so maybe I'm part of the conspiracy myself.
I do find myself wondering whenever I see a mentally retarded adult
"does that person have Fragile X?", but I've never actually asked. My
ettiquette script repository does not include an item covering this
circumstance.

[I sent this from my iPhone, so please excuse any excessive brevity or
typographical errors.]
--Zachary Drake

6 comments:

the other lion said...

I find myself wondering that a lot when I'm out. I'm lucky to have a couple of adults with FXS and one with FXTAS in my family, so I can see Punkin's future a little more clearly. I do see a difference between my great uncle (80s), my cousin (20s) and Punkin -- gradually they've each had more intervention and support services. They all make me laugh, and they all have things in common as well as differences. You just gave me something to blog about....

FXSmom said...

I've always just assumed that the parents of these adult fragile x'ers are just not as technologically in tune as we are. Maybe I'm just kidding myself.

I have an aunt in California with a son with full fx. He is around 40ish. He is still living at home, doesn't have a job but hangs out at his dad's mechanic shop a lot. He is a handful but like Erika said he is funny, loves life and is a joy to my aunt & uncle.

Umma said...

The only "live" contact that I've had with adult FX-ers is with my family. I have a cousin and my sister (who is still undiagnosed for some reason my mother won't discuss) and they're so very different.

Both received some services in school but Steven definitely received more...of course he's more clearly affected too.

Steven, however, is much more independent than my sister. While he lives at home he has received on-going services as an adult and he can largely take care of himself. My sister on the other hand is almost entirely dependent upon my mother. She can't even reliably shower on her own :-\

It really has made the importance of therapy and services very clear to me. I will never turn down an offered service as a result.

Sarah said...

Thanks all, for these thoughts/comments - very helpful.

SB said...

I am the mother of an almost 21 year old son, Jonathan, with FX. I met another mom (at the Mall, random meeting...) whose son was only 4. She saw Jonathan and just BAWLED. Like that was what her future looked like. Made me soooo sad. But it's was important, I think, for her so she can plan and make adjustments.

I remember when he was a toddler, I used to be a bit freaked out by older kids, too.

TheXMom said...

I have only ran across one adult with FX and that was even before my son was diagnosed. I think the reason we never meet adults with FX is because 30+ years ago the tests weren't available and people were given and MR diagnoses and it was left at that. As our children continue to grow I think FX will become more well known and the next generation will have the privilege of meeting our children as adults.