At the time of this article’s publication, many of us will have been affected by Hurricane Irene. In light of this weather emergency we can look at this event and learn some valuable lessons.
For those of us raising children with autism, high functioning autism or Asperger’s the challenges on a daily basis can be overwhelming. When there is a weather event or other emergency, those challenges can become acute.
It is very important to put plans in place for yourself and especially for your loved one with high function autism or Asperger’s. Though there have been pundits out there remarking on how non-eventful this weather event ended up being and are crying about the overhyping of the danger…I can tell you as a family who is living through the aftermath: if that was overhype I certainly do not want to go through anything worse.
Noah’s Ark Institute and our partner’s at the New Jersey Office of Emergency Management have collaborated on some helpful suggestions for families caring for individuals with special needs. Some of the information is adapted here, as it is especially helpful at this time after Hurricane Irene and can be useful for future planning.
Change – After a disaster, the physical environment (your home, neighborhood and other familiar places) can be altered significantly. It is important to anticipate this and extra effort may be needed to help all family members feel safe through the process of disaster response and recovery. Preparedness and talking about it is one way to mitigate the stressful impacts that change can bring. Your loved one’s routine will be disrupted. There may be large scale power outages caused by downed power lines or trees falling. If your loved one has a certain show which they watch on TV or cable program, this will be disrupted. Consider buying a portable DVD player with copies of the program or programs handy.
If you are sheltering in place, you should consider a backup generator. If so, ensure you have a power source, such as extra gasoline if the generator is gasoline powered. Remember to keep all dangerous substances in a secure place.
Ensure your car’s gas tank is also full. Make a habit of not letting your gas tank go below half full at any time. If power is out, the gas pumps at the local gasoline station will not work. If you must evacuate, you do not want to be stuck in a tremendous line for gas.
Communication – For those with high functioning autism and Asperger’s, disaster communication can be particularly challenging. Emergency responders may or may not immediately recognize that a person has autism or Asperger’s, or they may have varying levels of experience in dealing with this. In New Jersey, first responders are now required to complete awareness level training on working with individuals with developmental disabilities during emergency responses. That said, the more proactive we are at preparing ourselves and our loved one’s ahead of time the better the outcomes will be for everyone.
Though our loved ones with high functioning autism and Asperger’s are verbal, it is very important to remember that in times of great stress and the associated anxiety that the stresses of the emergency situation will create, our loved ones may become less able to express themselves effectively to you or to emergency personnel. A card or information sheet about how to best interact with your family member is a good tool to have on hand during emergencies. This is especially important, in light of a situation when many community members all need help at the same time. As you begin to prepare, you may want to consider some sort of social story and/or role playing scenarios with your family member.
Evacuation – The NJ Office of Emergency Management and the Noah’s Ark Institute NAI support the efforts of our Red Cross partners regarding mass care operations. However a mass care shelter environment can be noisy and chaotic. Think about alternatives to mass care shelters, if you need to evacuate. Staying with a family member or friend might be a better alternative. Taking all necessary steps to shelter in place may be the best scenario for your loved one, but there will be times, as we have just seen with Hurricane Irene, that large scale mandatory evacuations are put in place. Do not wait until the time of the emergency situation to make plans with those family members or friends. Call your family or friends ahead of time so you will have accommodations with them should you need them. You may want to remind them every so often of the arrangement, just to be sure no one is caught off guard.
“Go-Bags” – Go-Bags are sturdy compacts bags which contain emergency supplies and are kept in a safe accessible place so they are ready at a moment’s notice.
Your Go-Bag is an essential part of your disaster preparedness and should be taken seriously. A backpack or another easy to carry container in case you must evacuate quickly is best to use for this purpose. You may not be at home when an emergency strikes so keep some additional supplies in your car and at work. Think about what you would need for your immediate safety. One go bag should be created for each family member and don’t forget about a bag for your pets. Make sure each bag has an I.D. tag. Some common items to consider when you are making up your bags include: a Flashlight; Radio – battery operated w/ NOAH station; Batteries (replace as needed so you have a fresh supply and ensure you have the correct size for the items that use them); Shoes such as work boots and a change of clothes (sweat shirt, clean underwear) a warm hat and gloves; Some extra money in small denominations (cash machines will be empty or not working); Whistle; Dust mask; Pocket knife; Can opener; Local map; Some water and non-perishable food; Permanent marker, paper and tape; Photos of family members and pets for re-identification purposes; List of emergency contact phone numbers and addresses (in watertight bag); List of allergies to any drug (especially antibiotics) or food; First aid kit; At least a 7 day supply of all prescription drugs; Copy of health insurance and identification cards; Extra prescription eye glasses, hearing aid or other vital personal items; Toothbrush and toothpaste; and an extra set of keys to your house and car.
There are many resources on the internet to find lists of items to include in the go bags. Parents and caregivers of individuals with autism, high functioning autism or Asperger’s might consider additions to their go-bag. Some examples include, an information card about how to best interact with your loved one, contact numbers for physicians, therapists, personal care assistants and special comfort items. Comfort items may include portable electronic devices. Don’t forget the replacement batteries. If your loved one has a special toy or blanket for comfort that they use daily try remember to bring that with you in an evacuation situation. A copy of a social story you have created for the evacuation situation should also be included.
Parents and caregivers should make sure they have an extra copy or two of their child’s IEP and or behavioral plan in a water tight bag; in a long-term evacuation and recovery situation, this will be difficult to replicate. As these plans change over time, remember to replace the copies in your go bags.
Being involved with emergency planning is important for all. If you have a loved one with autism, high functioning autism or Asperger’s, it is essential to pre-plan for safe outcomes in the event there is an emergency.
If your loved one lives independently it is especially important to help them prepare and go over the evacuation plans you both have put in place.
This all may sound alarmist in nature but it is not. If you are faced with a true emergency where evacuation is essential and immediately necessary, you will not have time to cobble these things together. Plan for the worst and hope for the best. In an emergency, the more time you have to calmly evacuate or secure your property and your family, the better for everyone. As the situation on the ground changes, and may change rapidly, your loved one will look to you to set the tone. Your calm execution with a pre-determined thoughtful plan will go a long way to temper their unavoidable anxiety and make everyone’s situation better.
Post-emergency cleanup can take time and try on everyone’s patience. There may be long periods without basic services such as water and power. Roads may be impassable for some time and access to the workplace and school may be hampered. Think and planning ahead for all possible scenarios will be tremendously helpful during the crisis and in the weeks or even months thereafter.
Autism is often difficult to manage. In an emergency or disaster situation, being prepared, as much as possible, ahead of time will make that situation easier to manage for everyone.
Madeleine Goldfarb is the Founder and Executive Director of The Noah’s Ark Institute. Her work has been inspired by the many families and individuals on the spectrum it is her privilege to serve. Madeleine lives in Livingston, New Jersey with her husband, batik artist, Ahmi Goldfarb and their two sons. You can reach Madeleine through the Noah’s Ark Institute. www.noahsarkinstitute.org.