Moms of SN children

Sunny Days

Sun, Mar 29 2020, 10:14 pm

mommy3b2c wrote:

Are you joking??!! Don’t say something so stupid!! No one is denying care to children with Down’s syndrome.

I heard that too.
I heard if it comes down to it- and there is 1 ventilator and 2 kids- one with a pre existing medical or intellectual diagnosis and one 'regular' kid then it will not be the one with special needs getting it..

amother

Pink

Sun, Mar 29 2020, 10:17 pm

My son with HFA needs lots of attention or else he gets out of hand. I'm trying to balance working, cleaning, and regular housework. Where can I find the time to drop everything and play? Help

amother

Silver

Sun, Mar 29 2020, 10:35 pm

There is a special needs forum that's only for mothers of children with special needs. This was posted in a general forum. There are ppl posting who don't have a SN child themselves and don't really know what it's like.

mommy3b2c

Sun, Mar 29 2020, 10:52 pm

gamzehyaavor wrote:

And who did you hear this from?

amother

Linen

Sun, Mar 29 2020, 10:59 pm

Yes, I've been reading pretty extensively about what is going on on the medical front and this has literally never been mentioned. The only thing ever mentioned has been age related (which is horrifying on its own). Fear mongering with no facts is unhelpful.

Sunny Days

Sun, Mar 29 2020, 11:06 pm

mommy3b2c wrote:

And who did you hear this from?

The quote above was from a friend who has 2 children with SN.
And this was discussed extensively in a different group I’m in.
look at this article- there’s room for advocacy

https://www.nytimes.com/2020/0.....share

Quote:

When that happens, some are proposing to send the disabled to the back of the line. States across the country are looking to their Crisis Standards of Care plans — documents that explain how medical care changes amid the shortages of an unprecedented catastrophe. While each is different, many have a concerning common attribute: When there isn’t enough lifesaving care to go around, those who need more than others may be in trouble.

Last edited by Sunny Days on Sun, Mar 29 2020, 11:08 pm; edited 2 times in total

Sunny Days

Sun, Mar 29 2020, 11:09 pm

amother [ Linen ] wrote:

These lawsuits are preemptive saying they fear it may happen. Not that it's based on actual policy.

I sure hope.p it won’t happen...

amother

Silver

Sun, Mar 29 2020, 11:11 pm

amother [ Linen ] wrote:

These lawsuits are preemptive saying they fear it may happen. Not that it's based on actual policy.

Some state plans make clear that people with cognitive issues are a lower priority for lifesaving treatment. For instance, Alabama’s plan says that “persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.” Another part says that “persons with severe or profound mental retardation, moderate to severe dementia, or catastrophic neurological complications such as persistent vegetative state are unlikely candidates for ventilator support.”

imorethanamother

Mon, Mar 30 2020, 12:11 am

amother [ Silver ] wrote:

None of us live in Alabama. Can we not derail this thread with panicked imaginings? Most kids don’t even get sick.

Mama Bear

Mon, Mar 30 2020, 12:50 am

imorethanamother wrote:

None of us live in Alabama. Can we not derail this thread with panicked imaginings? Most kids don’t even get sick.

EXACTLY. kids for the most part arent getting sick, esp not to need a ventilator. The alabama plan is only in case of a truly mind boggling scenario where no vents are availalbe. BEZH it wont happen. Pls dont stress yourself over extra worries.

amother

Cobalt

Mon, Mar 30 2020, 12:57 am

Mama Bear wrote:

I just posted this (a video of a health care worker in New York city hospital showing what's going on right now in hospitals. It is not mind boggling there won't be ventilators. This is literally an issue right now... This is an issue in Italy, they had to decide who to let die to save someone else...
https://youtu.be/bE68xVXf8Kw

For OP thought please try to take it one day at a time... Hugs

ora_43

Mon, Mar 30 2020, 1:25 am

amother [ Silver ] wrote:

OK but there's a reason you're seeing words like "severe," "advanced," and "vegetative," and not chv"s words like "disability" or "disorder."

The idea isn't to rank patients by mental ability, it's to give patients who are aware of their own existence an advantage compared to patients who aren't.

And it's one of several criteria, with others being age and general medical state.

imorethanamother

Mon, Mar 30 2020, 1:39 am

amother [ Cobalt ] wrote:

This is literally the least helpful post I can imagine. I honestly don’t understand why this is even here.

Can we stay on topic please. Mothers have their special needs children home. That’s anxiety enough.

WitchKitty

Mon, Mar 30 2020, 2:30 am

amother [ Silver ] wrote:

And I'm happy it was put in the general forum, so I can hug them and say how much I admire them.

cuties' mom

Mon, Mar 30 2020, 6:33 am

amother [ Coral ] wrote:

Are you letting your com hB or respite workers come? What about your aides? Are they working these days?

I cancelled everyone. My neighborhood was hit pretty bad, and I can't take the risk of exposing more people. Ds has 2 respite workers. One does not live in the neighborhood so we would be exposing her to lots of germs if she comes. The other one is in my building and has been at least as exposed as we were, but she always takes ds out since he has nothing to do at home, and as ds hasn't mastered the art of keeping his hands to himself, he's not going out just for fun. I did tell her that if I see that I really can't get ready for pesach with him home, I may change my mind. Ds recently floured my kitchen and got floury footprints in every room, so I'm really happy I didn't clean much for Pesach yet.

amother

Rose

Mon, Mar 30 2020, 6:46 am

amother [ Silver ] wrote:

If most people are posting as amother, how do you know if they have SN kids or not? How do you know what they know or don't know?

Even among parents with SN kids, each one can have very different challenges. Experiences will vary widely. That doesn't make them suspicious.