What My Son's Disabilities Taught Me About 'Having It All'

http://www.theatlantic.com/national/archive/2012/07/what-my-sons-disabilities-taught-me-about-having-it-all/260479/#

by twakefield • 14 years ago

222 85 14 years ago

wmboy2• 14 years ago

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• 14 years ago

"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. [...]"

vacri5• 14 years ago

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'.

ibejoeb• 14 years ago

Are you referring to the article? It's not off-topic if it's worth reading. I'm sure many here are rather well-off but still struggle with happiness.

wmboy2• 14 years ago

Well, I'd already read (and enjoyed) this article outside of Hacker News, so when I saw it on the home page I was quite surprised as the article has no reference to technology, start ups or business in general.

With that said (& in case I was misunderstood) I have no issue with it being posted!

scottilee• 14 years ago

Jack Dorsey tweeted this a couple days ago and I thought it was pertinent: "Be happy, but never satisfied." -- Bruce Lee

http://twitter.com/jack/status/233963752347795456

FaceKicker2• 14 years ago

> "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".

pyoung• 14 years ago

That line also struck me as odd. My immediate hunch is that she took some liberties with the quote, as I doubt a medical professional would ask a question like that.

vacri5• 14 years ago

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• 14 years ago

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).

idaniboy• 14 years ago

It's not an uncommon strategy for clinicians to use questions like that to get parents or patients, who are dealing with an inordinate amount of stress, to let down their defenses with the intention of directing them to self-assess their resolve. The author may be able to take care of her child now, but how about when he's 18 years old, when his outbursts may start to hurt others. There are some families who are capable of overcoming the challenges of raising a developmentally disabled child to adulthood (such as this family) and there are some who can't. I've had patients break down and cry when asked pointedly challenging questions like this, however ultimately, this can be a helpful process for the parties involved when applied correctly.

I suspect that the author and others here have missed the true, veiled purpose behind the question, however that does not detract from the overall aims of her article or the clinician. In the end, the clinician's prodding has led to a led to a deeper raison d'être for both the author and the reader.

tobtoh• 14 years ago

What's so surprising about a comment like that? It seems like a way to build some rapport with the parents - a recognition that they have a hard job - a harder job than other parents with handicapped kids. And how the parents respond to a question like that would be illustrative to the doctor as to what sort of support the kid is receiving or can expect in the future.

I had a friend at uni who really struggled financially through no fault of her own (parents where farmers going through a drought, she had a serious illness, her sibling was mentally handicapped) and when she went to see the financial counsellor at uni, she asked him "So, what's my situation like?' and he replied 'Well it's pretty bad ... to be honest, your situation is the worst I've ever seen!"

She actually laughed when she relayed the story to me. She said it was a bit of blow to have confirmation that her situation was so bad, but it was also an immense relief to know that she didn't have to feel guilty about struggling. Her situation was bad - but she was still coping. That gave her a big boost of confidence that she could one day escape her troubles (and she has).

In the same way, I read the comment from the neuropsychologist in the same way, an attempt to build some rapport with the parents.

FaceKicker2• 14 years ago

Assuming the article is completely accurate, the doctor's phrasing and mannerisms (e.g., shaking his head, emphasizing not only that the child is in the bottom 1% but that 99% are better than him, "seemingly perplexed"), don't seem consistent with your explanation. His comments and tone don't strike me at all as being encouraging or reassuring, he just sounds completely dumbfounded by the parents' situation, almost as if he pities them for having such awful lives.

adrianwaj5• 14 years ago

I'm sure the kid isn't like that by accident. I don't believe the medical community is doing a good enough job when such children are becoming increasingly common. Hence my answer to that neuropsychologist would be something along the lines of "well, how do you have the complacency?"

Roboprog7• 14 years ago

Well, it's possible the autism increase is merely due to more frequent diagnosis, but I dunno...

(it's possible, sadly, that these kids maybe used to be infant mortalities back in the day - but it's also possible that pesticides, vaccines, lead paint, etc are simply poisonous to a small percent of the population as well)

roel_v2• 14 years ago

I think this point was not well explained, and what she meant was that the doctor was perplexed not by the kid being 1st percentile but at the calm that the parents kept, their seeming acceptance of the situation. Which is also what is implied by the rest of the story.

chris_mahan• 14 years ago

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."

zmitri• 14 years ago

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• 14 years ago

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.

newobj7• 14 years ago

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.

ghurlman• 14 years ago

Why? [citation needed]

newobj7• 14 years ago

Son was diagnosed as autistic at age 2.5. Many developmental delays including speech, inconsolable screaming, waking up 8+ times a night, and on and on. Literally a day after receiving his first MB12/L5MTHF injection he started talking. In the year and a half since, along with other supplements (fish oils, B6, probiotics, TMG, Zinc, etc -- all over the counter), and cutting out soy/gluten/dairy/eggs etc he's basically a totally typical kid now - he has no therapies, goes to a normal school, is advanced in some areas.

For myself, I lived a long time with low-grade but chronic anxiety and depression and after all this went down finally had some testing done on myself and found out I am homozygous for the C677T mutation, which means my body can't make methyl-B12 or methyl-folate. (Homozygous is 60-70% reduced efficiency in the reaction). I started supplementing with the same (though I get my MB12/L5MTHF orally, not injected), and for the first time feel like a cloud has been lifted. It's been amazing.

Turns out my mom, her dad, and so on and so forth were all B-12 anemic. It took my son being severely impacted for ME to finally get tested to finally figure out for the whole family what the problem is.

The interesting part is when the methylation process is disrupted by this mutation one of things whose production suffers is glutathione. It's a very important antioxidant (http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-...). Thinking about one of the major detoxifiers of the body being broken is interesting in light of the seemingly tenuous links between "autism" and vaccines etc.

In short my armchair speculation is that there's likely a large overlap between undiagnosed 677T/1298C mutation sufferers and "autism" and when you think about injecting those kids with things that contain known irritants causing even more inflammation that the body can't clean out, it's not hard to imagine why it seems like they "cause" autism. To me it's simply more like pulling the trigger on a gun that's already been loaded and pointed to your head.

Homozygous 677T mutation rate is somewhere between 1-15% in the US.

Roboprog7• 14 years ago

OK, I caught methylated-B12, but what's L5MTHF?

Roboprog7• 14 years ago

and for our newbies to autism spectrum jargon out there: GFCF = gluten free, casein free (no wheat, no dairy, nor things derived from those proteins)

newobj7• 14 years ago

L-5 Methyltetrahydrofolate

aantix• 14 years ago

Care to further explain the purpose of these injections and how they personally affected you?

Roboprog7• 14 years ago

They are to deal with a metabolic deficiency processing and/or digesting B vitamins. (my daughter has taken the methylated B12 shots before)

newobj7• 14 years ago

See my response below but I'll also throw out this link here that I found recently:

http://drneubrander.com/blog/2011/08/why-is-methyl-b12-stres...

richardjordan• 14 years ago

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?

newobj7• 14 years ago

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.

pragmatic• 14 years ago

Not Quite:

> However, detailed data analysis suggests that methyl B12 may alleviate symptoms of autism in a subgroup of children, possibly by reducing oxidative stress. An increase in glutathione redox status (GSH/GSSG) may provide a biomarker for treatment response to methyl B12. Additional research is needed to delineate a subgroup of potential responders and ascertain a biomarker for response to methyl B12.

arrel• 14 years ago

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• 14 years ago

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• 14 years ago

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.

giulianob• 14 years ago

Pretty accurate for my case. I have a nice new home, a good family, a good job, etc... but I spend a decent amount of my spare time working on a game as a side project because it's really my passion. I try not to complain about it though because I do realize I am very fortunate. However, I do definitely feel that catch-22 where if I didn't have a full time job I'd be able to dedicate more time for my game but without my job I'd be kind of screwed. At the end of the day though, I'm happy just to try and make my game work but I can't really complain about much even if it doesn't. I won't blame anyone else or even myself really, I do try hard. I'll just keep implementing the crappy ideas of the people in power instead.

einhverfr8• 14 years ago

I think though there is a deeper aspect of this. How can you be an employee and the parent you want to be, and still find time to do something great? The simple answer is you can't. You have to pick any two, and even there you have a bunch of tradeoffs. Want to breastfeed? How are you going to hold down a job unless you can have your kid around?

The work/home division makes this impossible especially for women. The answer of course is self-employment but that often means giving up on a "career."

Domenic_S2• 14 years ago

I think this is on track to change in the next few generations with working from home being more and more legitimate. If you have the skill to do the job, you can be a software engineer that works from home 90%+ of the time today; innovations in telepresence and better collaboration software are going to really push this envelope in the future.

kamaal2• 14 years ago

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.

einhverfr8• 14 years ago

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.

Domenic_S2• 14 years ago

If having another kid means that one spouse is going to have to give up a career, that's a low-quality tradeoff.

That depends entirely on the spouse. In a culture where 2 working parents struggling to survive is the norm, the freedom (financial and otherwise) to be able to choose to stay home to raise children if that's what you want is certainly a high-quality tradeoff.

Being forced to abandon a career when that's not what you want is a low-quality tradeoff, yes.

r00fus• 14 years ago

> If having another kid means that one spouse is going to have to give up a career, that's a low-quality tradeoff.

This is not an objective statement - that's your opinion. Perhaps the tradeoff is desirable - that person may not value their career so much, or can realize the obvious - you can always return to it later.

That said, I agree, "having it all" is a completely meaningless and damaging phrase - I equate it to "being all things to all people" - ie, rather naive outlook.

edw519• 14 years ago

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).

Jun8• 14 years ago

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).

einhverfr8• 14 years ago

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.

john61• 14 years ago

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

What My Son's Disabilities Taught Me About 'Having It All'

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