Special Needs Preppers: Dealing With Mental Health Challenges

Individuals and families of all kinds flock to the prepper mindset for all kinds of reasons. Among millions of preppers are those with one type of challenge or another. Many of them are dealing with mental health issues, either their own or those of a loved one.

At the very basic level, there are two kinds of mental health issues: genetic and environmental. Depression, social anxiety, PTSD, and others often have their roots in life experiences (environmental), as well as possible genetic predisposition. Others, such as bipolar disorder and schizophrenia, are more purely genetic, and then there are issues such as autism, which may have roots in both. In these cases, medication is almost always part of the treatment and handling change is often a huge challenge.

It can be hard enough to keep those with mental health issues safe in every day life. Sometimes, their condition means they cannot recognize that running out in front of a moving car or jumping out of a second floor window is dangerous, or stop themselves even if they do know.

In a survival life or death situation,  you as their caregiver may be forced to make choices that you would never, ever make in the normal ups and downs of life.

You must be prepared to make those decisions, to accept the least-bad option, to keep everyone alive and safe. You may have to use one of those child-leashes  or a wrist-leash to ensure your loved one doesn’t run away, straight into a big puddle with a live electric wire in it, or worse. You may have to give them medication you usually avoid due to unpleasant side-effects. You may have to lie or trick them.

You may also need to give them a sedative if they really won’t leave a danger area or are endangering themselves or others. Moving an unhappy toddler is hard enough – forcing a full-grown man who is determined to stay is a whole ‘nother level of impossible! While it doesn’t work for everyone, Benadryl makes many people sleepy and could be very helpful at the right time, including mid-way through an evacuation. If you anticipate this type of situation, you should work out a strategy in advance with their doctor(s).

Think hard about your loved one and what you may need to do if your choices narrow down to forcing them to go / not go somewhere, or possibly having them or someone else die. In a wide-scale emergency, there won’t be enough trained, experienced professionals to be everywhere they are needed. You need to be prepared to handle your loved one without professional assistance. Preparing in advance will make this easier.

Note: In addition to the steps in this post, please read the forthcoming post on Special Needs: Physical and Medical Needs. Among other things, having enough medicine will be discussed.

Do this FIRST

Emergencies happen without advance notice. The number one thing you can do to help your loved one is to make a small card telling emergency care givers about their specific needs. Bonus points if you laminate it. (They sell ID pouches and protectors for laminators.) Remember that in a wide-scale disaster, the first responders you see may not be trained professionals. They could well be local CERT volunteers. CERT trains people in handling emergencies within the community but even trained, experienced professionals have difficulty handling mental illness. Err on the side of simple, clear instructions on this card.

For example, if first responders are warned that a person is autistic and flashing lights may set off a reaction, that may give them a small window to guide the person away before more emergency vehicles arrive. If there is specific music, pictures, a game – anything – that helps them calm down, list it. If it’s something they normally have with them (on their phone or tablet, for instance), include that.

They should keep this in their wallet or clipped onto their backpack or purse. In short, in or on something they have with them all the time. Adding an app with all their key information to their tablet or phone is another good step. This information will help anyone helping them. Make sure it’s easy to find and check it every six months or so to ensure the information is correct and up to date, and that the card hasn’t been misplaced or lost.

After my mother in law’s memory failures became critical, we added a sticker on the back of her cell phone with our contact information in case she got lost and couldn’t find her way home. My phone has an app with everyone’s basic medical information in case I am incapacitated or forced to evacuate in an emergency. These kind of simple steps can make life much easier in an emergency.

Practice and reduce the fear

When change is the enemy, familiarity is a friend. Practice makes things familiar. You need to have a designated meeting space for emergencies and in case you become separate in daily life, and you need to assign tasks for each person in an emergency and practice them. There is no way to prepare and practice for everything, but these two easy steps are appropriate for a lot of different, potential disasters.

Stop by your designated meeting space on regular days, or having your loved one go there and meet you (so they are comfortable going there alone) makes that task more familiar, more comfortable, and less fearful. The more you do it, the more comfortable, less fearful, and easier to remember it becomes. If a hurricane, tornado, or fire destroys your home, walking to the meeting spot may be a familiar activity that your loved one does just becausethey want to be in a place that is comfortable and familiar, IF you have practiced it regularly. If not, then you may find them walking around the house, stuck and unable to move on.

Practice your evacuation plan. Make certain each person understands their tasks. That may be taking their own bag and emergency supplies to the car and staying there, or it could be something more complex like a list of chores to finish. If they have chores that are part of their normal life, they can still do them in an emergency. If feeding the cat / dog and cleaning up after their poop is part of their tasks, they can be responsible for putting their food and doggy poop bags in the car. If they help carry the bags to the car when you go on vacation, they can help carry them out in an emergency because it is still the same task.

On the other hand, asking them to do something completely new amidst a chaotic and/or dangerous time is asking for confusion and delay, at a minimum. It could easily lead to a total meltdown. If you know a disaster will require them to do something outside of normal life, practice, practice, practice. You may need them to help cover windows with plywood. You can practice standing and holding the wood in place. Even if it feels silly on a day without a cloud in the sky, it could make a world of difference in an emergency.

Practice making 911 calls, going to a trusted neighbor’s house for help, and even knowing some basic first aid skills. In many cases, aging parents are caring for adult children with special needs, and those children should know what to do if suddenly mom or dad isn’t waking up or is injured.

Whatever the novel task is, if it’s important in an emergency, find a way to practice at least part of it in advance. Even getting used to the feeling of work gloves and the weight / texture of the wood may make a huge difference. Baby steps in advance can make a huge difference later.

Remain calm

Once something happens, or is clearly imminent, the media coverage starts, and most media coverage could stress out Ghandi himself. Let’s not even think about how the sensationalistic media coverage could impact someone for whom even minor changes are stressful! Do your whole family a favor and turn off the TV and radio. If you need an update, listen using headphones or check online, then close your browser windows.

Keeping calm is important. Try to remain as normal as possible. Talk about ‘the plan’ if something happens during normal life so that when you need to talk about it during an actual disaster, it is still “normal” and the conversation does not become a major stressor in and of itself. Don’t push stress levels higher by inviting the crisis-hungry media into your home.

To reiterate, keeping an even temper and demeanor are important. If you are calm, it is easier for your loved one to stay calm.

Everyday life

Benadryl, especially the rapidly-absorbed liquid kind, can be a life-saver, but it can also go bad quickly if left in a hot vehicle. Carry some with you, but be sure to rotate any food or medicine you keep in the car regularly. A small tub with play dough and a weighted blanket may also help when you run into the kind of irritations that barely register for a neurotypical family, such as stopped traffic or a flat tire.

Keep a small pill box with one dose of every pill they take with you, just in case you leave the house without taking them or can’t get back in time for the next dose. (Neurotypical or neuro-atypical, we’re all human and make mistakes.)

As mentioned earlier, set meet-up places near your home and anywhere else you spend a lot of time. If something happens and they have to run for their lives or simply get lost, this makes finding one another again faster and easier. Bonus points if you make a point of going to that spot on a regular basis.

Emergency room visits

In addition to the emergencies everyone else has to be prepared for, those with mentally ill family members may need to be prepared for unexpected emergency room stays. Being seen in the emergency room can take a while for any person, but for those who need a psych bed (or – rarer still – a pediatric pysch bed), those waits can be interminable.

Keep a small bag in your trunk with supplies for your loved one and yourself. Pajamas, toothbrush / toothpaste / dental floss, a small pillow (or at the very least, pillow case), comfort items, and a throw blanket for each of you make a good basic kit. Slippers or slipper-socks and an eyeshade for sleeping are nice little extras, as well. If you rely on electronic gadgets, a spare charger (or at least a cord) could be a lifesaver. Don’t forget some entertainment for both of you as well as a copy of medical records, preferably on a thumb drive for easy access and less bulk.

Final thoughts

Talk about possible emergencies in advance. Practice. Keep basic supplies in your car, and rotate food and medicine regularly before they go bad from the heat. Remain calm.

Truthfully, these are the same steps everyone else takes, but with someone who is not neurotypical, you need to be more disciplined and repeat them a whole lot more. So much more that they become ingrained, normal even. You need to prepare for your loved one as well as yourself since you can’t expect as much help from them in a crisis.

But, as in so much of life, the basics really are the same as they are for everyone else. Be prepared – for yourself and for them. Practice, and have them practice. And make sure there is clear, easy-to-find information to help others help your loved one if you are separated from them.

Case Study from Emergency Evacuations: Evacuating a special needs loved one

From Emergency Evacuations by Lisa Bedford:

Lorraine is a good friend of mine who has told me a bit about her family’s evacuation plans. They have given this a lot of thought, more than most people, because her younger sister, Kay, is an adult with Down syndrome. They know that Kay will have a very difficult time handling the intense stress that can be a part of an evacuation.

At 47 years old, Kay is a moderate functioning, independent minded woman. She lives in a small, rural town with her parents. They identified hurricane force storms and wildfires as their most likely foes and have planned accordingly.

Kay has been given a set of 5 specific instructions, along with the family’s code words, “Bug out!” She may not know exactly why they’re leaving or specifically where they’re going but she does know to do the following:

1. Get her emergency kit.
2. Gather her security items.
3. Take those to the car.
4. Return to the house to help Dad get into the car.
5. Stay there with him.

Kay’s dad has mobility issues and will need extra help. This final task keeps her attention focused while Mom loads the car with everything else, secures the house, and gets ready to drive away.

As Lorraine explained this plan to me, she emphasized the need to carefully consider the needs, abilities, and temperament of the special needs person. In the case of her sister, there are many security, or comfort, items she’s attached to, but her parents have made it clear that she probably won’t be able to bring all of them. “She’d bring her whole bedroom if she could!” Lorraine joked. Kay tends toward obsessive compulsive disorder (OCD), which is something the family takes into consideration.

Several years ago I received an email from the worried mom of a young man who was significantly autistic. Like Kay, he was OCD but was the size of a grown man and impossible for his mom to physically handle when he became upset.

She said, “Lisa, I’m scared to death about a possible evacuation because there’s no way I can physically get him into my vehicle. When he becomes emotional, it’s impossible to do anything with him and he’ll actually fight against me.”

A situation like this poses a moral dilemma for parents and other loved ones, and there are no easy answers. Is it right to abandon the one they love and hope he or she survives so that the rest of the family can reach safety? Should one parent stay with the special needs family member while everyone else leaves?

The recommendation I gave to this worried mom is a decision that is ultimately between parent and the family physician. Consult with a doctor who knows your loved one well about a sedative that is as risk free as possible, yet effective, and keep several doses on hand. This is one of those “In case of emergency, break glass” solutions — something used rarely and only in the most extreme scenarios, a life or death situation.

As well, pay close attention to anything and everything that triggers extreme emotional reactions. In the case of Kay, her family has taught her simple, structured steps in a non-threatening, unemotional setting and they have rehearsed them with her. They know that her security items hold high value with her, so they have included those items as part of her evacuation routine.

Portions of this post are excerpts from Lisa Bedford’s book “Emergency Evacuations“.

Learn more about prepping for special needs

• Elderly Preppers
• Physical & Medical Challenges
• Pregnancy, Babies & Toddlers
• Severe Disabilities
• Single Moms