Thursday, November 20, 2008

None of that works for us

When parents are having a difficult time, there are a number of things they tell themselves to help them through ordeals that would otherwise be intolerable:
  1. "He'll grow out of it."
  2. "It'll get better soon."
  3. "It's worth sacrificing so he'll have a better life."
  4. "Well, if we want grandkids, this is what we have to do."
  5. "Someone did all of this for me, and my child will do all of this for my grandkids."
  6. "He'll take care of us when we're older."
  7. "All kids are like this."
None of these apply without modification when raising a special needs child:
  1. "He'll grow out of it.": Well, perhaps he will, but it may be several years.
  2. "It'll get better soon.": See above. Several years is not "soon."
  3. "It's worth sacrificing so he'll have a better life.": Yes it is, but "better life" doesn't mean "smarter, higher-achieving, better off materially, more opportunity than we had". It means maybe he'll be able to live outside our home someday, maybe get some kind of job in a supervised environment, maybe get a treatment that will alleviate his severe cognitive impairments.
  4. "Well, if we want grandkids, this is what we have to do." Unless treatments for Fragile X progress a great deal (and in time for Quinn to be able to take advantage of them), it is highly unlikely that Quinn will be able to create and maintain a traditional family.
  5. "Someone did all of this for me, and my child will do all of this for my grandkids." People sacrificed enormously to raise us. But they didn't have to go through the shit we're going through. Twice the work and half the goodies. By "goodies" I mean those developmental milestones whose arrival cheers us and makes us feel that it's all "worth it".
  6. "He'll take care of us when we're older." Again, without major advances in treatment, this is highly unlikely. Of course, I hope by the time we need elder care, the singularity will have arrived and we'll all be uploaded into a hive-mind god machine.
  7. "All kids are like this." No, they are not. Watching other children do what seem to be superhuman feats of development or even just reading the blogs of other parents with toddlers makes that abundantly clear. We're in the secret club of parents with special needs kids. And it is difficult to communicate what that's like to other people. Not impossible. But not something easy to do in a lunch conversation with a co-worker, or in an e-mail to an acquaintance. This blog is an attempt to bridge that gap, and to provide some comfort for those of us trapped on this side of it.

10 comments:

The Other Lion said...

It's just so nice to hear it from someone else. Do you get tired of hearing, "Oh, you never know." I do know!!

Sarah said...

Yes, I totally get tired of hearing, "Oh, you never know!" I am an optimist, but sometimes I find American-style optimism totally inappropriate for what we are dealing with. Another parent of special needs kids once told me she found more comfort in Buddhism, which accepts suffering as a part of life.

Vicki Davis said...

Sarah, Your post made me so sad, and really admire what is it you guys are doing. I thank the universe every day that Holly is a girl, and thus has 1 good X, because I don't think I could bare it otherwise. Even as mild as she is now as a baby, I don't know how much worse she may get when she gets older, so things like hoping for grandchildren are still a little too hopeful for me, but I can still hold on to some of those things because she is a girl, and her odds are better. I am so sorry you are having a hard time, I can't imagine, you seem to together. The other day you mentioned Siblings, we are talking about PGD, IVF if you are considering this I would love to talk more about it, because again, I am not sure I would have the stregth to raise a fragile x boy. The blogs i read of the parents who do, leave me in awe daily.

Jen said...

Well said, Sarah.

Jen said...

Oh, I guess this post was from Zachary....Well said, Zachary. :)

Jen said...

Okay, sorry to take up space with 3 comments, but it's all coming back to me.
I remember that year after Kyle's diagnosis, also known as the year when the percentage of days that I cried was greater than the days that I didn't. Everyone, including my mom and my husband were like "it's no big deal," "things could be worse," "crying about it isn't going to help," etc.
I REMEMBER that phone call from my mom (I talked to her almost everyday--still do) when she finally said, "No, I don't know what it's like," and other things along those lines. It was like she was finally giving me permission to grieve. Because that's what I was doing...grieving. And it's usually not proper to tell someone who is grieving that "It's not that bad."

Sarah said...

Yeah, Zac was the original poster on this one. He is quite the writer. : ) And I'm only a little bit biased. His post arose out of a conversation we were having last night. I'd be up for talking about sibs sometime, Vicki, though at this point mostly I am pulling Zac's leg about it because neither of us is really ready for another kid. And Vicki, I can tell, just from meeting you and reading your blog, you would certainly have the strength to deal with a fragile x boy or anything else that came your way.

Sarah said...

I think we cross-posted, Jen! Yes, it is too true that people like to comment that "it's not that bad," which they would never do about other experiences of grief that they can relate to better. And please always take as much space in our comment area as you like! : )

FXSmom said...

another one i still cringe at is "boys tend to be slower than girls. it'll be fine." i wonder how many professionals have said that and it didn't turn out okay

WritingAllNight said...

I just found you and I love this post. You said everything I try to explain to others who just seem to think this will go away.

My child is a girl, but even with an 'extra' x, it doesn't make it too much easier, she has autism along with the 'possible' FXS.

We'll have testing soon to find out for sure, as soon as her medical records are transferred, yet again.