Special/High needs
Posted by Kidd__@reddit | preppers | View on Reddit | 46 comments
I have a 10 year old with Autism and BPD. I’m curious on how those of you with special/high need family members prep and what you’re prepping for. How do you tackle some of the harder things? Am new to prepping and parenting so please even if it seems common sense drop knowledge below. TIA.
silasmoeckel@reddit
My youngest is on the spectrum. The biggest thing is to keep it all normal but that's the same for any kid.
My routine event is a nor'easter with a power outage. So it's a few to a week of snow days as far as they are concerned. It's foreseeable so easy to stock up on the day to day so it's little different than a restful Sunday at home. lazy in her PJ's.
Hurricane we hunker down in a basement apartment, it's a big sleepover sorta thing.
A family camper get used on vacation and is gets me redundant systems for everything in my driveway.
We have even done some nights of hunkering down in the safe room.
Hiking/backpacking is a routine activity for the family.
Some key preps for all this is solar/bat/gen and deep pantry/freezer. PACE for internet/entertainment/coms (fiber/starlink/cell/local server ham does the coms side). Plenty of lower tech distractions as well.
If we have to bug out, our primary is a cabin with family/friends also having cabins we go out there many weekend so it's kids she knows. This really came in clutch during covid.
Upside is many autistics love a beige diet and food repetition in general so if you have to fall back on preps it's not much different for them.
Kidd__@reddit (OP)
He will only willing eat cilantro, quesadillas, cheese and pretzels. None of these items were in my inventory before he came along (I’m off dairy entirely) but now I’m looking at ways to supplement
silasmoeckel@reddit
Cilantro is available canned.
Tortillas are easily made. Stock more flour in the deep pantry and wheat berries in the long term preps.
Cheese can freeze along with dehydrated (if they will tolerate it).
Pretzels store well enough for deep pantry and can be made. So tortillas as to inputs.
So your back to the you need stable power so solar/bat/gen to keep the freezer going.
Go past 6 months will be harder and expensive but also very low likelihood events.
Kidd__@reddit (OP)
I had no idea there was canned cilantro. I’m not sure he’ll tolerate canned cheese but I’ll pick some up and give it a shot. Thank you!
SunLillyFairy@reddit
I have a kid with ASD, high needs level. I think prepping is about being prepared for your most likely needs, in any situation. So... if the lights go out and you can't get food/go to a store... what do you need? Is there anything different about your household? Special foods, medications, adult diapers or other medical equipment, sensory toys or blankets, different security?
You should have a couple months of things that they really need to be healthy or comfortable, or at least a couple of weeks.
I live in an area that gets snow... only sometimes... and my kids pharmacy closed down for a week for like 3 inches of snow, (it was ridiculous a d frustrating), right when his medication was due for refill. I couldn't even get a hold of a pharmacist to have it transferred to somewhere that was open and it's a specialty compounded medication so I couldn't just go to the ER or something to get it either. If I didn't have a backup on hand we would have been screwed.
Also consider... If you had to evacuate, what would you need to bring to help your kid? I'd really suggest you put together an evacuation kit. I think all families should have one, but even more important when you have a special-needs household member. If you had to evacuate, you just wouldn't have the time to think through anything different or special they might need.
Side note... my kids wears a GPS tracking device. It's our most important Tuesday prep, because if that kid got lost in a crowd or something, he would be extremely vulnerable and in danger very quickly.
Kidd__@reddit (OP)
Right now I think my immediate concerns are loss of power and being “snowed in” were NRC transplants from CA the kids only ever seen snow twice. An evacuation is my worst nightmare. The number of sensory and comfort items he has is frankly overwhelming, they wouldn’t all be able to come with us and I just know he’d throw a fit slowing us down and maybe causing injury. What type of GPS do you have on your son? Mine has been know to elope so I’d love to have that as a secondary option (primary is double cylinder locks)
mekat@reddit
Writing this as a single medical mom to a 21 year old disabled from birth with severe physical, intellectual and medical disabilities.
I prep for normal stuff and disasters I don't do end of the world prepping. What that means is medical equipment has backup. Two wheelchairs, two enteral pumps, several months of worth enteral formula, multiple medical backpacks/go bags, stockpile of adult incontinence products along with several months worth of ostomy products.
In the medical world I find disaster happens about every 1-2 years. Some of the scenarios I have run into in the real world. A supplier has factory contamination and shuts down production or a supplier has shuttered a factory or product line creating a cascade of medical supply shortages. Insurance denying life supporting supplies for 6 months. Transition to another hospital or another state delaying access to meds and supplies that need documentation and/or prior authorizations. All of these issues I have run into and all required raiding my stockpile of supplies to keep my medically dependent son alive and safe. Even the extra wheelchair is necessary because repairs are expensive and they can take months for a repair order to be approved and processed through insurance.
Keep track of who can't keep their supply chain and factories going, once is unfortunate, twice is unacceptable but forgivable if they remedy the problem and three times is reason to jump medical suppliers. For example, I won't use anything Cardinal Health supplies anymore because they put their stockholders and profits first and they don't care if it endangers tens of thousands of peoples lives who are dependent on their medical supplies. My decision makes finding a local medical supplier more difficult because the new manufactorer is a smaller company but the company actually has reliable follow through and if push comes to shove I can pay privately and have their supplies in hand in days. Which is something you can't do if there is a world wide shortage due to manufacturer incompetance.
Now your kid has autism. Maybe that means you have multiple AAC devices, comfort/fidgit/sensory items, incontinence items and any other adaptive things they need. You know who supplies their meds and healthcare products you keep backups, you have plans on what to do in a shortage etc...
The one other thing I went through with my son was an EF4 tornado. Keep the most important supplies in your safe place so if your family survives what your kid needs to live and function survives also. If your child is non-verbal ID and contact information need to be on them because it is easy to be separated in post disaster chaos. I am about to get morbid one contact number should be to someone you trust local enough to help your child but not so close they would die with you if you died. The tornado outbreak we were in was wide spread and some kids were the only survivers in their family. Backpacks are your friend in these situation. You can't carry a disabled child and their medical supplies in your arms it is too much especially because you be navigating post disaster debris. When a disaster hits with that type of destruction you don't know how far you have to walk to get to undamaged areas.
The one thing a lot of places don't tell you is after a disaster insurance will replace items but they limit the time you can request replacements so you need to make sure you have contact number of pharmacies, doctors, therapists, DME and home healthcare suppliers ready and easy to get to and those numbers need to be in more then one place. In chaos, phones get lost or broken so a physical backup copy in one of your go bags is a good idea.
As for handling emotions. I have to keep my emotions locked down. I can't lose control of my emotions because it will create a cascade event leading to a meltdown. Emotional meltdowns slow you down and can become physical and if you are already fighting to stay alive and safe this isn't a battle you can afford to have. You may deal with post traumatic behavior regressions. Navigating emotional fallout is harder in disasters because you can't shield them from things. My son due to his needs was triaged in the town's fire station even though he wasn't directly injured and it meant he saw some of the worst injuries. My son whom never wanted to sleep with me, slept with me for a while after the tornado because it was the only way he felt safe.
I'm sure your journey will look different from ours but having to navigate a disaster or medical shortage IME is a matter of time so you should have been prepping for this yesterday.
Kidd__@reddit (OP)
Thank you for this. 🙏🏾
Nearby_Impact_8911@reddit
I think about this a lot I have a special needs kid. Not high on the spectrum. My hope is that when there is a crisis we will be at home. Outside the home will be harder to navigate. If he doesn’t recognize danger that’s a problem or worse if something happens to me while we are out, what will happen?
Kidd__@reddit (OP)
My biggest concern is with the autism and the BPD he’s know to have some violent outbursts that wind us up in the hospital. If we’re in a situation where travel isn’t ideal that’s an issue. If I have to restrain him that’s two less people we have helping around the house and a whole lotta noise when we probably rather be quiet.
Nearby_Impact_8911@reddit
I totally get it
bleenken@reddit
It’s just like prepping with a baby or an elderly person. What will they need in the scenarios you are prepping for, and prep that. It will be more than you would need yourself. Prep the go bags, prep the duplicates. Practice some scenarios if you can. Not all at once, but in pieces. With the goal of making the things you anticipate having to do in case of an emergency familiar and practiced. It is easier to bail on something that’s not working well and try again later when there’s no emergency at hand.
Euphoric_Engine8733@reddit
This doesn’t apply to my family but as someone who has small kids with food preferences: if your child has certain preferences for brands or flavors, I’d stock up. With future supply chain disruptions, who knows what might go missing from shelves. My kids like one specific brand and flavor of ramen, and it has been unavailable since February. That kind of thing is going to be more and more common in the coming year.
TangibleExpe@reddit
Many of the folks in my life with similar wiring don’t enjoy unexpected changes or unfamiliar situations; my understanding of why there is often fondness for routine, repetitive diet, etc is that it’s a way to even out the sensory overload that can come with neurodivergence.
Discussing the big picture of what the plans are, and why you’re approaching things a certain way would be a big help, I think. I also think exposure to novel situations in a low stress environment helps.
So in a practical sense, don’t pile a bunch of mre’s in the car and announce you’re camping one weekend. But maybe get a selection of shelf stable food and involve the child in picking which ones they like, and explain how they are made, watch related YouTube videos together, that sort of thing. Slow rolling and making them feel involved and listened to should help.
Kidd__@reddit (OP)
Thank you. I’m really glad I made this post because it’s helped me get a lot of good ideas at approaching things with him.
Mischeese@reddit
Which level of autistic? If she’s level 1 (Asperger’s) then teach her skills.
How to grow food, prepare it, cook, start fires, forage, she can follow maps, know how to get clean drinking water, make sure she fit and can walk a long way, self defence etc. Basic Girl Guides is probably a good place to start. If she can’t join a local one then use their literature to teach her yourself.
You never know it might become her special interest?
Kidd__@reddit (OP)
Still being evaluated, he dislikes anything “dirty and gross” and it’s a chore to get him out and about. A habit I’m hoping to break soon as I spend more time with him.
bugabooandtwo@reddit
One thing I've found with autistic kids, is many really seem to love maps and landmarks. Good be interesting to introduce him to geocaching, foraging, and tracking activities.
Logistics is incredibly useful in any sort of prepping, as well. Knowing what you have, what you need, how much of X Y Z you consume a day, how to set up a deep pantry and maintain it...that's right up that alley, too.
Kidd__@reddit (OP)
I hate logistics but know how important it is. I just ordered some maps of the area so maybe I’ll give him a map reading lesson and see if he wants to come on a hike with me.
LyonessYork@reddit
I always disliked dirt as a child, and avoided it. I learned, though, that with gloves on, I could handle ANYTHING, and I've enjoyed growing things ever since. It's even easier now with nitrile gloves being so cheap.
chantillylace9@reddit
Would he like to learn to sew? Cook? Woodworking?
Mischeese@reddit
That’s a tough one. Maybe make it more like a game with a reward at the end. Or tie it in somehow with a special interest. Sounds like you are going to have to get creative. Good luck!
Kidd__@reddit (OP)
That’s. He’s recently got into anime. There’s a camping one I’d like to watch with him maybe that’ll incentivize him
Terrible-Explorer536@reddit
Try Dr. Stone, its a post apocalyptic scenario about rebuilding. My 8 year old daughter and I watched it and it opened up some good conversations. "What would you do about xyz"
Kidd__@reddit (OP)
Will try this too. I haven’t seen it either so it’ll be a first for both is us
localdisastergay@reddit
As a most likely autistic adult (my psychiatrist agrees it’s likely but testing as an adult is expensive), I would suggest thinking about what scenarios you are prepping for, what the general advice is for those scenarios and how you might adapt those plans for what your kid needs in order to thrive.
As an example, there are plenty of scenarios where having a generator would be helpful. I am trying very hard to save up for a solar setup because generators are loud and they are exactly the kind of noise that tends to bother me.
You mentioned in a comment that your kid dislikes things that are “dirty and gross.” In situations where there is a division of necessary tasks, make sure your kid knows how to do the things that won’t feel dirty while someone else tackles the ones that will. If there are any particular items that help your kid stay more regulated in stressful situations, like earplugs or noise canceling headphones, make sure that there is a backup in the go bag.
Kidd__@reddit (OP)
The issue is he doesn’t want to clean either 😒 He’s not much of “team player” and with the BPD, urging him to do basic tasks sometimes leads to loud/violent outbursts.
I shoot so I keep ANC headphones with me and have gotten him a pair. He has too many comfort items which worries me in the (unlikely) event that we have to leave the house for a prolonged period of time.
Environmental-Sea41@reddit
By accepting that in a true collapse, natural selection will weed out the medication reliant part of humanity.
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Kidd__@reddit (OP)
Any advice that isn’t so bleak and depressing? Yeah ik the odds aren’t in our favor but that doesn’t mean we can’t struggle and try
MerelyMortalModeling@reddit
We will be fine, if anything people with that mind set will be the ones that get ah "weeded out"
Kill_doozer@reddit
Hi, medication dependent autistic adult without a thyroid here. IMO it's looking like a violent revolution is coming. My plan if shit hits the fan is to be as useful as possible for the 90 days i have left to live once i run out of meds. Odds are i'll kamikaze my way out once I'm nearly physically of no use anymore.
Alanosie@reddit
+1 look for the things that are possible and within reach. Complete collapse hardly ever happens so prepare for more realistic events
Kidd__@reddit (OP)
Yeah am definitely more concerned about a recession or supply shortage (remember addedall a few years ago?) than full on societal collapse. Still with us being in the NCR those would be nice to prep for eventually.
BoltActionDeathMech@reddit
Only realistic answer. They are all likely cooked.
TangibleExpe@reddit
How are you expecting natural selection to go for people with low impulse control and nothing helpful to offer?
shringing277@reddit
Jeez dude that sounds like borderline eugenics
MmeLaRue@reddit
If you're currently managing things with medications, ask your doctor or pharmacist about which plants might, in an emergency, have similar effects to them. Shore up your knowledge with reputable websites on the Interwebs and check multiple sources - then write down legibly what you've learned.
What I suggest to all preppers is to maintain a book of important information for family-specific challenges as well as general practical details for survival and recovery. If there is a major grid-down collapse and you don't have your own source of electricity (solar, wind, nuclear), you're going to need to have some books on hand with this kind of knowledge to guide you along for long-term survival, as well as a means to gather more (notebooks, paper, pens, pencils, etc.). In a deep-collapse scenario, knowledge becomes a commodity worth trading.
MacaroonUpstairs7232@reddit
We are a family full of autistics. Find what is of interest that is a useful skill and let them go with it. They will become an expert. Usable skills are always needed. Gardening, herbal remedies, hunting, fishing and foraging, alternative energy, mechanical skills... so many things. My grandmother started teaching me about plants when I was young, my grandfather taught my brother how to fix most anything. The autistics in my family are the wierd and quirky ones, but, we are also the ones everyone will turn to when shtf
milk3njoy3r@reddit
[ Removed by Reddit ]
Background-King9787@reddit
I saw above that he hates being icky and dirty! Hygiene matters in survival. There’s a great episode in cramming for the apocalypse which offers other resources. So now his job is family hygiene planner! For ickiness he can test different gloves (utility, gardening, leather…)and ways of cleaning in the outdoors, plan what to stock in your hygiene stash and research what to do in nature when cleaning supplies run out.
How we talk to scary strangers and learning how to try to engage with police in a meltdown are already life saving skills. And having autism is a master class in adaptability and masking.
And finally…prepping is niche. Most people have a favourite sub niche. And strong opinions about their sub niche and are on reddit about prepping and plan camping around those hobbies…dude is not going to be the only autistic human well equipped in an emergency. We need to be worried about how to help our neurotypical neighbours who don’t know 17 ways to secure water
susanrez@reddit
I see the murderous dirtbags have already showed up. Allow me to bring a realistic and historical perspective instead of the white supremacist fever dream of ‘natural selection’;
Different types of people are helpful in survival situations. Autistic people are great problem solvers because they can narrowly focus on finding solutions. When everyone else is succumbing to chaos a person with autism will keep the fire burning in the stove, or will show you they figured out how to pump water from the creek while everyone was busy with the harvest.
Mental health issues in survival situations tend to be over-ridden by the more primitive parts of the brain. If you look at studies of people in large scale apocalyptic situations such as hurricane Katrina, mental health crises weren’t an issue until after safety was secured.
Society has always thrived on a having a wide variety of individuals across the spectrum. It is only since the invention of a ‘master race’ that this obsession with a singular perfect type of person best suited for survival has reared its ugly head.
I’m Native American and we’ve always thrived with all different types of people within our groups. We never tried to only have the “fittest” or the “strongest”. Don’t listen to these idiots.
Kidd__@reddit (OP)
Thank you. This give me hope
Alanosie@reddit
Welcome to parenthood and the responsibility pressure that comes with it. Congratulations for being part of the minority who actually take action to being responsible for preparing for events that shake up our day to day operations.
I'm not familiar with how to deal with someone with extra medical needs but if it is medication save some to bridge any disruption of whatever is possible for that specific medicine. If cooling or stable temperature control is necessary for the meds make sure you have backup power to keep a dedicated fridge/freezer running. It seems wise to work with a system like this; battery/solar/generator
Kidd__@reddit (OP)
Thank you. I fell into the power hole last week and battery/solar/generator does seem to be the most popular setup. As I’m renting I’m somewhat limited but have started shopping for battery packs
trixis4kids@reddit
Great question, and lots of love to your family. While I am not in this situation, answers about natural selection to me show the limits of the prepping mindset. The current reality is already super ableist. Getting involved in organizing for disability rights or other mutual aid is a prep for the world you want. Let the downvotes begin lol.