
What My Son's Disabilities Taught Me About 'Having It All' - twakefield
http://www.theatlantic.com/national/archive/2012/07/what-my-sons-disabilities-taught-me-about-having-it-all/260479/#
======
FaceKicker
> "You know cognitively, he's functioning at the bottom 1 percent of children
> his age," [our neuropsychologist] said. [...] "That means 99 percent of
> children are doing better than he is." [...] He waited, seemingly perplexed.
> "Having seen what I saw, and of course you have to be with your son all the
> time -- I have to ask you, how do you have the patience?"

I'm confused, can anyone offer any insight as to how a _neuropsychologist_
would be genuinely surprised by this case? I would have expected that a rather
large percentage of a general neuropsychologist's (or at least one that
specializes in children) patients would be people who "function at the bottom
1 percent".

~~~
vacri
I had major problems with that story as well - I used to work as a medical
tech in neurology, and half our patient load were kids.

Either the story is made up, she's misreading sympathetic commiseration for
astonishment, or the neuropsych is massively inexperienced. Although the bulk
of kids I saw were not like that, cases like the one in the article are not
rare. One kid I saw had a left hand that was like leather because biting it
calmed him down. Academically interesting, but not astonishing, and certainly
not something you should be eroding the parents' confidence about. The only
kid I saw that was truly unsettling was one whose throat didn't work properly
and _constantly_ sounded like he was drowning in saliva. He literally could
die at any time, and his mother said that you just have to get used to the
sound.

The thing is, most parents with severely mentally impaired children deal with
it. They kind of have to, because the choices are largely limited to "deal
with it" or "let your life fall apart". Occasionally we'd get parents who
would morosely define their lives around their child's problems (or even
worse, munchausen-by-proxy, but that was really rare for us to see), but for
the most parents it was a sense of 'life marches on'. I think the article
gives a great sense of that, but the reactions of the neuropsych really
disturbed me.

~~~
dsatrg
I get the impression that section was very much from the authors view.

Whilst I know nothing of bringing up a child with such a condition I do know
other close to me that have had to care for someone full time. And to be frank
most of the time they would have looked "astonished" by such a question but
take the opportunity to discus the matter, see what can be done to help the
situation (in case close to me, such a conversation lead to them having a
outside help every once in while so the carer could have a break).

------
edw519
I love posts like this on Hacker News!

They remind us all that what is in our heads and our hearts trumps everything
else: money, stuff, conditions, and the opinions and actions (or inactions) of
others who really don't matter.

Like just about everyone else here, I can add my own experiences. I'll just
say that I have more of some things than I ever thought I would, but the
things that I've lost remind me what's really important. Sometimes I wish I
had learned this much earlier, but it's never too late...

Let's all make the most of the cards we've been dealt - one day at a time.

Thanks, OP, for the yank back to reality. Now back to work (with a smile).

------
wmboy
Quite off topic, but well worth reading nonetheless.

So often we live out lives with the subconscious belief that we'll be happy
when ...[insert big goal]. The reality is though, if we can't learn to be
happy with our imperfect lives as they are today, we'll never be happy.

~~~
CodeMage
"Happy" is such an ambiguous word and happiness such an elusive concept. While
I truly sympathize with the author, this article, like many others in similar
vein, seems to offer the same kind of message as that stereotypical mom-to-
spoiled-kid admonition: "Eat your food, don't you know how lucky you are?
There are children starving in Africa!"

I agree that the media are trying to sell us the idea that happiness is a
state to be obtained by achieving whatever is the latest definition of
"success" and I agree that this is bad. But if we're trying to avoid that,
let's be careful not to run into the other extreme: confusing happiness with
contentment.

It is normal and natural for human beings to _want more_ and strive for it. I
think that the idea of "having enough" goes against our nature. Sure, I
probably have more than I absolutely need for survival. Sure, I guess I "have
enough" according to some arbitrary definition of "having enough". I most
definitely "have enough" when you look at it from the point of view of someone
who has less.

The point I took away from the article is that we should enjoy what good we
have. That's a message I can agree with: even if you want more, don't forget
to enjoy what you have now. But I can't take that one more step and settle
down and say "That's enough." I still don't see why I should do that. Perhaps
it'll come to me some day, but for now, all I can think of when people offer
me that idea is this passage from Frank Herbert's "Children of Dune":

 _"[...] Tell me, Namri, are you content?"

"No." The words came out flat, spontaneous rejection.

"Then do you blaspheme?"

"Of course not!"

"But you aren't contented. You see, Gourney? Namri proves it to us. Every
question, every problem doesn't have a single correct answer. [...]"_

~~~
vacri
_I think that the idea of "having enough" goes against our nature._

Our nature as _humans_ or our nature as _European-derived societies_? Plenty
of indigenous peoples around the world are/were quite happy with "having
enough".

Striving for more is a cultural thing, not 'human nature'.

~~~
daeken
Our purpose in life is to spread our genes as far and wide as possible. As
such, it's not far off to say that "striving for more" is a facet of human
nature; having more money, a fancier car, more goats, bigger muscles, etc is a
great way to get more mates, and fulfill your evolutionary goals to a larger
extent.

~~~
mattgreenrocks
Fuck success, and all the glorification of it. I've been a slave to it (and
ambition, which is just success in another guise) for _way_ too long.

Why do I say this? Because I'm not fully convinced it was always me choosing
success. I was choosing success out of my own broken desire to be accepted
socially, as if I had to redeem myself in people's eyes. This was a false
reality I'd constructed based upon negative experiences in the past. The
winning move was _not_ to become the Ideal Male Seen On Magazines, but instead
to grow into my identity. I have nothing to prove, and no one to impress,
ideally.

I'm not saying success is bad. I just wonder sometimes if _someone_ benefits
from all the neurosis and anxiety that the trappings of success lays for
people. Capitalism? VCs? Because it seems that many elements of culture are
_not_ created with our best interests in mind.

Think about it.

~~~
koningrobot
_The winning move was not to become the Ideal Male Seen On Magazines, but
instead to grow into my identity._

Sounds like you've traded one mythology for another. I doubt there was any
"identity" that you pin-pointed, decided you wanted to grow into, and worked
toward growing into. Rather, I think that "to grow into my identity" here
means "to grow into that which I will grow into", making it self-fulfilling.

Evolution gave us pain and suffering; indeed we shouldn't glorify it. But we
should also not glorify the way things are as the way things _should_ be. Can
we all please deal with our insecurities in some other way than by making up a
story saying _it's all okay_? The world is on fire. All is _not_ okay.

~~~
mattgreenrocks
> The world is on fire. All is not okay.

I'm well aware of this, and looking for ways to contribute to the good of
humanity, rather than racking up a huge bank account. That is what I choose.

------
newobj
Every time I read a story about a kid with developmental disabilities and
gut/gluten issues, I'm dying to know if they've ever tried MB12 and L5MTHF
injections. God knows it changed my kid's (and my) life.

~~~
richardjordan
Not questioning your personal experience but do you have any scientific
studies not authored by vendors of the supplements that support this. I have
an autistic son, and like most parents in this situation, helping him is my
number one priority. However my understanding jibes more with this NIH study
which shows no statistically significant benefits.
<http://www.ncbi.nlm.nih.gov/pubmed/20804367>

I'd love pointers to peer-reviewed studies in favour of this stuff, as I'd
love to believe there's a simple solution like this... I just fear there
isn't.

Again, not questioning that you feel your child has benefited - just asking
what tipped the balance for you in trying this out and do you have any
scientific studies you can point one to in order to research this more?

~~~
newobj
We were lucky enough that one of the first interventions we ever tried for him
besides OT basically cured him. I can tell you that many, many parent in the
online communities we're members of will tell you the "talked after MB12 shot"
story.

So, no action we took was on the basis of a comprehensive and wide-ranging
scientific study of studies... rather finding a D.A.N. doctor who knew just
what to do.

What tipped the balance was that this is one of the least interventive things
possible. Really THE least. Everything he takes can be had over the counter.
We did it blind at the time because I had no clue about 677T and only found
about it later.

To honestly answer your question, as I mentioned below, I'm getting the
feeling (again, armchair, lay person only, but been living in communities real
and online for a few years now) that autism is an overly or perhaps entirely
umbrella term that's really capturing a number of diseases with similar
pathologies. One of which would be 677T/1298C mutation, specifically
homozygous or compound hetero. The good news is that it seems easy to treat.

I know not every autistic kid out there has the same root cause, but being the
parent of one, and going to his (old) school, and seeing so many poor
beautiful kids impacted that it just crushes my heart to pieces, and their
poor parents trying so hard to fight through it all and get them help... I
really have no choice but to be an advocate for getting your kid screened.
It's a simple blood draw, find out their 677 and 1298 status. And if they're
anything, even heterozygous, immediately get them on MB12/L5MTHF.

I fear for other parents, esp. those of vax injured kids, the road could be
much harder, with chelation possibly being necessary etc (which is obiously
fairly interventive and HIGHLY controversial). But if there's any chance that
part of the solution could be such a low hanging fruit, I have to get the word
out as much as I can.

~~~
danielweber
I'm glad your child got better. But you are falling for _post hoc ergo propter
hoc_.

If this cure is so incredibly quick and awesome, it would be amazingly
irresponsible for its proponents to not run a double-blind test.

Otherwise we just get into dueling anecdotes, like
[http://www.chicagotribune.com/health/ct-met-autism-
therapy-l...](http://www.chicagotribune.com/health/ct-met-autism-therapy-
lawsuit-20100304,0,5271734.story)

~~~
newobj
Did I say you can cure autism with B12 shots? I don't think so. I said my son
was diagnosed as autistic, showed marked improvement within 24 hours of
MB12/L5MTHF injections, and after the fact we came to discover homozygous 677T
mutation, for which MB12/L5MTHF would have been the primary course of
treatment had we not already embarked upon that path.

My post is more about how something with a very specific root cause, e.g.
methylation problems, was diagnosing as autism (across multiple doctors,
naturopaths, pediatricians, etc), and how it may be the case that some subset
of autistic kids could be in a similar boat. From that study itself "However,
detailed data analysis suggests that methyl B12 may alleviate symptoms of
autism in a subgroup of children, possibly by reducing oxidative stress."

What I'm a proponent of is genetic screening (a simple blood draw + lab work)
for an autistic child to look for 677T/1298C mutation. That's a known problem
with a known treatment and I don't think there's anything irresponsible in
advocating for that.

Autism is such a wide-net term that I would have a hard time inferring any
meaning from a study that simply categorizes the subject(s) in a binary
autistic/not autistic manner. e.g. which ones were vax injured, which ones
have gut issues, heavy metals, yeast overgrowth, genetic conditions, etc. Many
children imaginably require a multi-pronged approach so to try just one
particular approach against an unqualified set of subjects seems bound to
disappoint.

------
Jun8
This is a fantastic heartwarming story that I think most of us will have
something learn from. For me, the takeaway was, as Tolstoy said: "When is a
man free? When he recognizes his burden", i.e. a graceful acceptance of
circumstances that one cannot change. I have long proposed to have a course
"Life Engineering" in schools teaching people metaprinciples of planning and
enjoying life, this should definitely be one of the reading assignments (along
with DFW's commencement speech, and many others).

Yet ... yet ... while I truly believe that the thoughts expressed here are a
major part of individual happiness, if a significant portion of the society
behaves/acts according to these principles, I may not want to live in such a
society. Unending hunger for new things, although it generally brings about
personal unhappiness, takes society forward faster; there are many examples of
such personal sacrifices in science, literature, music, e.g. how many great
poets/writers do you know who have a happy family life (came to mind, since I
recently read an essay by Alexandra Styron).

On a different thread, (overgeneralizing, but only a bit) being content and
acceptance is very common in "the East" and not just Buddhism's influence
either, it is a common theme in many streams of Islamic thought. Something can
be said about the effect of this in why these countries couldn't catch up with
the pace of the "materialistic West" (yes, yes, there were a ton of other
factors, but I think this may have been one of the major influences).

~~~
einhverfr
The Stoics were fond of saying "The inner part _cannot_ be delivered into
bondage." In other words, we are free when we decide to be. Nelson Mandela or
Martin Luther King may have been more free while in jail than most people are
on the outside as they go about their daily lives.

The upshot is that society doesn't owe _me_ (the inner part) freedom. Society
can't give that to me. It can't take that away from me. Only I can do that.

------
zmitri
If anyone is interested in this topic, you should check out Louis Theroux's
Extreme Love series <http://www.bbc.co.uk/programmes/b01gvt26>.

Some parents seem to echo the same sentiment, but many of them don't. While
larger families seem to be able to cope, and actual appreciate having someone
slightly different, many single mothers are forced into having their children
taken in by the state.

~~~
pwny
Louis Theroux is an excellent reporter. He really has the gift of getting in
touch with the people and stories he covers. I mean, the guy spent a lot of
time with the WBC and still tried to understand them instead of going crazy
like a lot of people would have.

------
chris_mahan
I told a lady at my son's school, after I dropped him off one morning:
"There's at least a billion people who would love to be wearing my shoes right
now."

------
holri
Nice read. Nothing new, just read the old Greek philosopher Epictetus.
<https://en.wikipedia.org/wiki/Epictetus>.

------
arrel
I usually have a hard time ignoring the Joneses and feeling content with what
I have, and I don't think that's a necessarily bad thing. Those who accomplish
the most, from Thomas Edison to Bill Clinton, often do so _because_ of this
drive to be better than the rest of us and have it all. Progress depends on
discontent, and it's easy to read feel good articles and exchange "happiness"
with "laziness".

~~~
kalid
I think it depends on the field and the person: in politics and business,
probably.

Do you think Einstein or Gauss were driven by a desire to have it all? I
suspect they'd still do what they did even if they'd "made it" and were the
richest men on earth.

------
michaelochurch
This aside has nothing to do with autism or the writer of the article. I just
want to tackle the "having it all" discussion.

When people say they want to "have it all", they're not actually saying they
won't be happy until they have _everything_. A life without tradeoffs is
literally impossible. You can't, for example, become an expert on every
subject or visit every location in the world or learn how to play every
musical instrument ever made. It's impossible. Rather, they want a life full
of the stupid bullshit tradeoffs that you have to deal with if they don't have
resources, like having to decide between a 90-minute commute vs. living in a
cramped space without a dishwasher.

Those horrid tradeoffs make it impossible for most people to achieve anything
great. It becomes a self-perpetuating cycle. If you're losing 20 hours per
week to housework, you won't have a good career. If you don't have a good
career, you won't be able to afford help. You have to bust your ass during
your 20s and 30s (and preferably not have any health problems or setbacks)
while you can to establish momentum, and just hope that your reproductive
potential hasn't declined too much by the time you're career's in order and
society has thereby given you permission to have kids properly.

Tradeoffs always exist, but there are people who are richer and more
established and have a higher quality of tradeoff to face. If you're debating
whether to leave a high-level position for a "risky" CEO spot at a funded
startup, this is a high-quality tradeoff. If "downshifting" your career means
you buy a place with a view of Prospect Park instead of Central, that's a
high-quality tradeoff. If having another kid means that one spouse is going to
have to give up a career, that's a low-quality tradeoff. People with enough
resources (not just income, but also connections; well-connected people don't
fret about getting fired and don't have to work 60+ hours per week) _can_ have
two successful careers and well-adjusted children.

The "have it all" rhetoric is an attempt people make to universalize the
problem, because no one can actually have everything, and divert attention
away from the more specific/parochial fact that they're miserable because they
don't have enough resources (since no one likes a person who whines about not
being rich). And if you want to actually achieve something in this world, most
people don't have enough. Most people spend their lives bogged down in shitty
details implementing the crappy ideas of the people in power.

~~~
kamaal
Wow! Well put.

This is also the same with money. People often say having a lot of money
doesn't bring you happiness. Well neither does not having money.

Besides there is nothing like total happiness. You just have levels. Having a
lot of money solves a lot of fundamental problems, giving you the room to
worry about other high-quality issues in life.

You can never do away with those things, but having a lot of wealth, resources
and money means you continually ensure all low level issues are taken care off
and you move towards bigger things.

~~~
einhverfr
I don't think it takes a lot of wealth either. It just takes enough wealth to
meet those low-level needs.

A lot of people spend a lot of their money on things that do not contribute to
their overall quality of life and happiness. We can do with less if we are not
interested in one-upping everyone else. A simple car (and only one if
possible), a simple apartment in a safe community, basic food, etc. don't take
a lot of wealth to maintain. What is required though, as the original author
points out, is changing the expectations we have in life.

Why replace a working stove? Why is it that important that you have a new one?
When I rented out my house, yes we replaced the stove but that was because the
oven heating element had failed, and it had other problems. We felt that the
move to a self-cleaning oven would be a good thing for the renters.

Do more with less, and the rest takes care of itself.

~~~
kamaal
As michealochruch mentioned. You never get out of tradeoffs. The only thing is
the more you have the more freedom you get to make 'high-quality' tradeoffs.

~~~
einhverfr
But my point is that you can get freedom by local optimization rather than
just by getting more wealth. People lose a lot of freedom by squandering what
they have.

