OT: Find myself wondering how DS would fare in a disaster....

[welovedis]

it is difficult not to think about what would happen to him if something happened to DH & I in a situation like what they are dealing with in the south. We've heard from a few local families and some others that we "know" through Aspie boards and there are a few families and children missing. My hearts break for them all, but I can't help to think what would DS do if something disastrous ever occurred in our hometown? Do you all have emergency plans in place for such a thing?

I'm not trying to be morbid, I really want to do something now in case we ever face something difficult in the future....tia!

[minkydog]

You know, this is all I can think about. It's terrible! My DH says i'm just upsetting myself, but I can't quit thinking about it. My DS10 is severely mentally handicapped & autisitic. He has no self-help skills, cannot talk, and is not potty-trained. He can walk, but has no sense of danger. When he is out of his routine for more than a few days, he can get destructive and throws tantrums. How in the heck would we even get him up to a roof-top, and once there, how would we keep him from walking off into the water?? :confused3 He isn't able to control his temperature well. Would we be dealing with heat stroke as well? :headache: He can't drink from a water bottle!!

DH has stage 3 CHF ,severe lung disease & seizures. He's a great guy, but his health is high-maintenance. Without his meds,water,& shelter he would be in serious trouble within a day.

Even if we evacuated, it would be very difficult managing their dietary needs. The MRE's alone would do DH in(he is very sodium-restricted.) If we had to start over, how would DH even find another job? The one he has is great--they make accomodations for his fatigue, let him telework part-time. But's he's almost 50, with serious chronic illnesses. :confused3 Who would hire him?

:badpc: I gotta get off this p.c. for awhile.

[BillSears]

I'm a paraplegic and have thought about disasters before. I just always assumed I'd do my best to live but in the end if the disaster is bad enough that I'd just be one of the ones who didn't survive. :confused3

So other then deciding not to live in a disaster prone area and preparing as best you can there isn't much you can do about it. Since it's out of my control I don't worry about it.

Life isn't fair. Natural disasters don't decide to take it easy on the disabled or on the elderly or on the people who are out of shape or on the poor..... You just have to accept certain things that you cannot change.

[LindsayDunn228]

Bill, thanks for posting what I was going to say :) :) :)

[videogal1]

Well, time to learn to swim.....or , better yet, fly... :rotfl:

[Nik's Mom]

You guys have been reading my mind. I keep thinking about the other asd children in those areas and how it must be pure Hell! My heart breaks for all of the victims! I can't even imagine how terrible it must be! But I feel a special bond with any family with an asd child, so I really find myself worried sick about those poor kids. My asd son caught us watching coverage and he said "they need help, Mommy". Again today, he walked in on the news and asked "where's the help?".
All my prayers are with those people. I'm also praying for those effected by disabilities in the area. May God give them strength, because He is the only one that can help them right now!

[SueM in MN]

I can't even begin to comprehend how it is in those places right now.
Not even just for my family, but for where I work.
I've been thinking of what the hospital I work in would do if there was some kind of "disruption" for more than a day. We have a lot of people on respirators. I know how scared some of them are when they are temporarly off the vent for weaning. I can't imagine how scary it would be for them to know they are on battery power and that the battery can't be recharged because there is no power. I can't imagine how the staff in the hospitals are doing what they are doing.

I am praying that they get things at least stabilized soon. This is going to be a "long haul" situation and I feel for everyone who is in it.

[marj70]

I think about that anytime there is a disaster like this. The hardest part with Alex (4 yr old with autism) is he just would not understand. He would have no way of coping with being hungry, thirsty, etc. And how could we ever be in a shelter? How would I contain him, etc? The thought is just TERRIFYING. :sad:

[MommytoMJM]

I am right there with you....I have no idea what MJ would do without us, as it is I worry about what she will do when we die a natural death (she will outlive us) She can only eat by g-tube, without elctricity to run her pump she'd die. She doesn't even drink water by mouth. We always have to go to the Special Needs shelters when we are evacuated. Sigh, off to cry again!

[Nik's Mom]

Cnn was interviewing a doctor that is trapped in one of the hospitals. He said that since they have been out of electricity, the people on vents are being kept alive by someone "bagging them". I assume he meant they just manually keep squeezing the bag attached to their breathing tube. Suemn could probably confirm this. Can you imagine! They must be exhausted and the patients must be so frightened!

[minkydog]

Cnn was interviewing a doctor that is trapped in one of the hospitals. He said that since they have been out of electricity, the people on vents are being kept alive by someone "bagging them". I assume he meant they just manually keep squeezing the bag attached to their breathing tube. Suemn could probably confirm this. Can you imagine! They must be exhausted and the patients must be so frightened!

"Bagging" a patient means you manually squeeze an ambu bag several times a minute for as long as it takes. It is exhausting and I'm sure they are having to take turns. Your hand goes numb after awhile. It is uncomfortable to the patient, too. I can't imagine how frightening this would be.

[SueM in MN]

"Bagging" a patient means you manually squeeze an ambu bag several times a minute for as long as it takes. It is exhausting and I'm sure they are having to take turns. Your hand goes numb after awhile. It is uncomfortable to the patient, too. I can't imagine how frightening this would be.
::yes::
At the hospital where I work, we have been on emergency power a few times and once when our emergency generator was being upgraded, we had a planned total power outage for a few minutes while they switched the generator off and on the power grid.
It involved so much planning.
I can't imagine how it would be to have no power, no idea when the power would go on again and have patient's who needed equipment to live. it's different if it's something like an IV or a feeding tube that you can run by gravity if you need to (just requires more attention). But something like a vent where someone has to be constantly manually operating it is beyond anything I can think of.

[Schmeck]

Yes, there was a report by a hospital staff member that many patients on ventilators had died because there was not enough staff to keep them all vented by hand.

[Selket]

They have shown a few folks on tv who were out of insulin - one child who looked like she was going DKA and needed some. It breaks my heart and I'm outraged at how long it has taken to get help to those people. Some of us on the children with diabetes website were discussing it last night. I don't know how these folks could end up without their insulin but on the other hand I think no one thought this time last week that it would take so long for help to reach them.

I've thought about it a lot too - my 3 yr old is a type 1 diabetic and pumps. It takes a lot of different supplies for his pump - some folks don't keep enough supplies around for if they had to go off the pump for an extended period - thinking they can get to the drugstore and buy syringes, etc. I am already thinking how much of what I need to have as back-up. I must say too that it isn't like my insurance covers us having a month's worth of test strips in reserve or something.

I live near Washington, DC so the idea of some kind of terrorist attack where we're told to stay in our homes seems more likely than a natural disaster. What if we weren't allowed out for a week or a month? In any case I think we can look at what has happened in New Orleans and learn that if something REALLY bad happens no one may be coming to help you for quite awhile.

[SueM in MN]

I thought about the medication problem too.
I am on medication and my youngest DD is on 3 different types of medication (one of them is for seizures and one is for spasticity). Usually the insurance company won't let us refill more than 2 or 3 days before we are out. The only way they will do it before that is with a phone call to the insurance company and then they may agree to do an over-ride.
So, if we have any national disaster where I live, if it's near refill time, I'll have a problem.

[SueM in MN]

Yes, there was a report by a hospital staff member that many patients on ventilators had died because there was not enough staff to keep them all vented by hand.
I just say a report (a rerun of a report) on CNN where they said that.
They also were talking about a neonatal ICU and what happened when the power went out. They said they could not find the flashlights and had to bag the newborn/premature babies in the dark. Apparently none died though.
Just horrible to think about.

[Ahrizel]

This thread has really got me thinking. I work as direct care staff at a facility for kids/adults with severe mr. Most of them are considered profound mr, non-ambulatory, non-verbal. Probably a third are tube feed, and a number have major respiratory problems. What the heck would we do if we had to evacuate the area??? I mean, they have plans to evacuate the building in an emergency, but what if the whole area was in trouble? It boggles my mind just thinking of it. How would we get them out quickly, when most of them require w/c vans just to transport. Truthfully it scares me just thinking of it. I don't think they have a plan for this, and I think I'll annoy the higher ups by asking them their plans for a natural disaster like that hurricane. Unfotunately, I'm pretty sure they won't have an answer for me....

[mbb]

This thread has really got me thinking. I work as direct care staff at a facility for kids/adults with severe mr. Most of them are considered profound mr, non-ambulatory, non-verbal. Probably a third are tube feed, and a number have major respiratory problems. What the heck would we do if we had to evacuate the area??? I mean, they have plans to evacuate the building in an emergency, but what if the whole area was in trouble? It boggles my mind just thinking of it. How would we get them out quickly, when most of them require w/c vans just to transport. Truthfully it scares me just thinking of it. I don't think they have a plan for this, and I think I'll annoy the higher ups by asking them their plans for a natural disaster like that hurricane. Unfotunately, I'm pretty sure they won't have an answer for me....


I think this very question is on many parent's minds right now...

..and Ahrizel, keep pushing for a plan. Please don't be satisfied with anything less. As we've all seen, it's a matter of life or death...:(

:sunny:

[SueM in MN]

I think this very question is on many parent's minds right now...

..and Ahrizel, keep pushing for a plan. Please don't be satisfied with anything less. As we've all seen, it's a matter of life or death...:(

:sunny:
::yes::
Please bring it up. They may have a plan, and depending on how they are licensed and/or certified, they probably do have a plan of some kind. But, their plan may be a plan to get the people out; then what?
The assumption in most evacuation plans is that your building has become unsafe and you need to get out of it to somewhere safer. What if your whole corner of the world is unsafe? What if the nearest safe place is many miles away and, even if you could get there, it doesn't meet your needs? Where do you go?
You probably would stay in place, like many of the hospitals apparently had to. Then you have to think about how you could function if your hospital became an "island."
I know that the evacuation plan at the hospital I work goes to getting them out the door. We DO have a management team that would be looking at alternatives during a disaster. What alternatives would depend on how things happen. An assumption is usually made in those plans that staff who are there will stay there and staff who are abel to come in will come. But, that may not be possible.
We also have looked at what happens if we have to stay in place. We have thought about things like locking the facility down. I have to say we have thought about protecting ourselves from armed groups who might come looking for drugs. We thought about it, but never thought it would be something that would really happen. I think our next Safety Meeting will be very interesting as we think some more about things that were unthinkable.

[Ahrizel]

Please bring it up. They may have a plan, and depending on how they are licensed and/or certified, they probably do have a plan of some kind. But, their plan may be a plan to get the people out; then what?
The assumption in most evacuation plans is that your building has become unsafe and you need to get out of it to somewhere safer. What if your whole corner of the world is unsafe? What if the nearest safe place is many miles away and, even if you could get there, it doesn't meet your needs? Where do you go?

They do have a plan if the buildling has to be evacuated in an emergency-say a fire-and the plan of where to put all the residents in a nearby facility. What I'm not sure of is the 'whole corner of the world unsafe' plan, if they have one at all. And pulling this off quickly, especially if we had to get out of the area entirely could be a nightmare. If it's just our building we could just wheel them, the alternate is only a few blocks. But out of the area-oy vey! Not that hurricanes are a real threat to us, mostly just flooding up here. But something can come up and with the world today the odds of 'something' happening just seem to be going up. I do plan on bugging the administration next week, I get a kick out of that anyway:) However I'm on the bottom of the totem pole at work, I just take care of the kids....

[SueM in MN]

They do have a plan if the buildling has to be evacuated in an emergency-say a fire-and the plan of where to put all the residents in a nearby facility. What I'm not sure of is the 'whole corner of the world unsafe' plan, if they have one at all. And pulling this off quickly, especially if we had to get out of the area entirely could be a nightmare. If it's just our building we could just wheel them, the alternate is only a few blocks. But out of the area-oy vey! Not that hurricanes are a real threat to us, mostly just flooding up here. But something can come up and with the world today the odds of 'something' happening just seem to be going up. I do plan on bugging the administration next week, I get a kick out of that anyway:) However I'm on the bottom of the totem pole at work, I just take care of the kids....
I am higher up the totum pole where I work, but wanted to point out that most of the higher up the pole people (at least where I work), realize that we are all balanced on that pole together. And the lower people are most important; without them the whole thing falls apart.

Anyway, I don't think that there was a lot of thought of anything so catastrophic happening in one area. I'm in Minnesota, so we're not going to get any hurricanes either. The charge before was to look at things that were likely hazzards in our area. It sounds like there was not a good plan there for a hurricane (which was likely to occur), much less for all the things that were less likely.

[welovedis]

Thanks for the responses and thoughts on this subject. DH and I consider ourselves pretty much prepared for disaster situations, he was trained thru a local program to assist the deaf members of our community in a disaster since we have a large deaf population here. However, it was one of those things that we didn't worry about too much.

This weekend we are purchasing some supplies to keep in the house and going to set up a plan in case of a disaster, natural or otherwise. We are also going to contact DS' school in a week or 2 and find out what their policies are with they go into "lockdown" mode or where our DS would go in an emergency at his school. That way we can plan ahead and also start talking to him in little bits about what might happen.

It certainly has me thinking and talking about it with friends, neighbors & family members. I've got my elderly mom more than an hour away and now she is, slowly, thinking she should have some type of plan in place too.

Thanks again for the responses, it is definitely food for thought!

[Earstou]

Our local support group sent this link today http://www.unlockingautism.org/ . UnlockingAutism is helping families with ASD kids affected by Katrina, and you can also donate through this site.

I, too, wonder how my son would handle such a situation. We were grocery shopping once when a van caught fire two spaces away from where we were parked. I discovered this as I was leaving the building, and my son saw it before I could do anything. He fell apart, and I had to go back into the store and sit down with him. People were staring at him because he was crying and yelling, afraid that our car would burn up, too. Grocery shopping is very hard on me due to my own disability, so I really needed to leave. But, even with the fire out, I couldn't get my son to budge. I finally told him the firemen would stop us if it wasn't safe to go to our car, and since he admires firemen, he allowed us to leave. It was still difficult for him, but we made it to the car.
Tornadoes are what I worry about, living in tornado alley. I have an area prepared in the basement, with flashlight, radio, blankets and water. I think after this, I will be adding more!!

[Andrew Bichard]

Link to experience of disabled person from New Orleans

http://www.bbc.co.uk/ouch/news/btn/rox_neworleans1.shtml

Andrew

[arminnie]

I think that the real lesson here is to BE AS PREPARED AS YOU POSSIBLY CAN.

Obviously many of those affected were not capable (for many reasons) of helping themselves or their loved ones. This is NOT a reprimand of them.

But for those of you that are taking care of special needs individuals, it is very important that you ask yourselves these questions NOW not later. Many people make elaborate plans on how to have a trip to WDW. The same time of pre-planning thought needs to be invested in catastrophe planning - though hopefully you won't have to use the plans.

Yes, it would be extremely upsetting to some disabled children and adults to have their routine disrupted, but you do want to make sure that they will be alive. Hopefully you can get a routine established for them later but in the immediate time they need to be kept alive and on meds.

I have an elderly friend (almost 80) in New Orleans who has a special needs son. He is almost 50 and has severe cerebral palsey. He can sometimes use a walker but only for very short distances (think feet not yards).

Fortunately she had made advance plans. Her son lives in a group home with several other young men and has for about 5 years now. He loves it there. He visits at home on the weekends.

The home (operated by rest care) had a plan in place to take care of the men who live in the home (6) . They were evacuated on Saturday to northern LA and all are comfortable and safe. Yes - they are disturbed by this disruption but they are SAFE. They left at the first mention of a problem - not Sunday, not Monday, not Tuesday after the storm.

My friend who is on oxygen also left on Saturday - no waiting around. She is safely in Texas and is making plans to get her son transferred to a home near her.

Is that perfect? No, but they are both alive, safe, and did not have to go through horrendous physical hardships.

I truly respect those of you that are care providers. Bless you all.

[TiggerCate]

I am jumping on this thread late (haven't been on the board in a couple of weeks). I practically have anxiety attacks thinking of how I would be able to handle these situations with my ASD DS. We don't have hurricanes, we have earthquakes, so luckily I probably wouldn't need to try to sit on a roof with him. I can't even imagine keeping my kids kept in one place (including the toddler) like a roof or a shelter. I have already decided that I could never go to a shelter- I'd rather have us all sleep in our van first- at least I could lock my son in with us!! My DH heard an awful story from the Superdome of a woman whose autistic son freaked out and ran away from her because of the chaos- and she hadn't seen him since. I have been so sad thinking about that, because I could completely imagine being in her shoes.