Hacker News Reader

Comment by devonbleak | Hacker News Reader

I have a cousin with DS. You have to be committed and have the means to raise a child with extreme needs. Many of them will live with their parents their entire lives and will not develop cognitively beyond their tweens (hence the Britney Spears anecdote above). The ones that do move out tend to have to go to a place that specializes in assisting them. They can also have pretty extreme health issues.

Yes, they can be beautiful people that bring light to others around them, but those others also don't typically get exposed to the behind the scenes struggles of the entire family to cope with this.

Some people are prepared to do this; I don't judge the ones that decide they're not. I would hate for someone to go into it not understanding what they're signing up for.

View on HN

The true challenge is what happens after those caregivers pass on.

I think this point would be better made without using the word “extreme” so much. All children bring new challenges; kids with DS often bring more; my child with DS has never, ever been an “extreme” challenge (just like most of the other families with kids with DS we know). There are definitely outliers where the “extreme” applies, but it’s not a helpful way of thinking about DS in general.

From this[1] list of associated complications one can read:

People with Down syndrome are much more likely to die from untreated and unmonitored infections than other people.

Children with Down syndrome are much more likely than other children to develop leukemia

Children with Down syndrome are more likely to have epilepsy [...] Almost half of people with Down syndrome who are older than age 50 have epilepsy.

And from this paper[2]:

Clinical research and longitudinal studies consistently estimate the lifetime risk of dementia in people with Down syndrome to be over 90%. Dementia is rare before the age of 40 years, but its incidence and prevalence exponentially increase thereafter, reaching 88–100% in persons with Down syndrome older than 65 years. [...] In a longitudinal study of adults with Down syndrome, dementia was the proximate cause of death in 70% of cases.

Saying they can have extreme health issues does not seem excessive given the above IMHO.

[1]: https://www.nichd.nih.gov/health/topics/down/conditioninfo/a...

[2]: https://pmc.ncbi.nlm.nih.gov/articles/PMC9387748/

It's interesting about the leukemia one. They're also more likely to survive it than children without Down Syndrome and less likely to get a second cancer.

https://www.ucsf.edu/news/2017/11/408906/survivors-childhood...

Aside from that, it is actually hard to paint an accurate picture of today with historical data for people with Down Syndrome as the childhood Trisomy 21 strategies have improved and been implemented in the past 20-30 years. 60 years ago kids with Trisomy 21 were moved into institutions. Kids 30 years ago got some basic treatments to keep them alive. Now kids get all kinds of screenings for hearing, vision, thyroid, heart conditions before problems develop. Turns out it's very difficult to grow, learn and thrive when your thyroid doesn't work, or your cardiovascular system wasn't circulating enough oxygen.

There are more struggles for sure, including intellectual disabilities, but many more kids are doing significantly better than their past generations. It costs more, is more work, but like the parent poster said, my experience certainly isn't extreme. We go to more doctor's appointments, have IEP meetings, and she's in speech therapy. She's generally been pretty healthy, happy and very active.

It was scary when she was born. We were given a pamphlet with a list of things similar to your first link. The reality though is she's more likely to have those than the general population, but some of those things are very rare. 100x very rare is still rare. Having all of those issues would be even more rare. The greater point though is that any kid can have those issues too.

The epilepsy link seems to conflict with what I've seen. https://pubmed.ncbi.nlm.nih.gov/31391451/ https://www.downs-syndrome.org.uk/about-downs-syndrome/healt...

Both of those put it closer to 10% sometime in their life, with about half of those at birth.

To add to what magicalhippo said about the extremes of medical issues, the extremes of parenting seem appropriate. "Average" parenting follows a trajectory of intense parenting of a newborn, and end at light/no parenting of an adult. For an overwhelming majority of families with kids with DS, the intense parenting requirement last long and more progresses slowly and the trajectory plateaus at around the tween stage, where a significant portion of your day, every day, is dedicated to managing and caring for your child. I would say that spending tens of thousands of additional hours, likely up until your own death, caring for an adult child would count as extreme needs.

As the percentage of adults of ordinary abilities who fail to launch continues to rise, I wonder if we'll stop seeing this as a deficit specific to DS and other intellectual disabilities.

Reply on news.ycombinator.com