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What if there is an emergency?

Recent events have been on my mind lately. A good friend spent hours watching firefighters battle a huge blaze in an apartment complex across the street. An area the size of a city block was lost. All the people who lived there lost their homes and belongings. Certain surrounding areas had to be evacuated as well. Others were put on “standby” alerts.

People in the state where I live lost everything when an old dam burst and allowed water from the recreational lake it had created to inundate the subdivision and part of the large sized city just downstream from that location.
People who lived there lost their homes and belongings. Somebody I knew there was without utilities, including water and sewer for several days as the area began to recover.

There are chemical spills, forest and urban fires, floods, earthquakes, violent damaging storms, civil unrest, and many other reasons why people must suddenly leave their homes , evacuate certain areas, and try to begin new lives in places that are strange to them.

Do you have plans for such an emergency? Now is the best time to think about it, as terrifying as it might be.
Emergencies do happen in every part of the world, every day.

Our autistic inflexibility can be an extra problem for us in emergency situations. We can be so shocked by rapidly threatening events that we become ‘frozen’ and unable to act for ourselves. We may not be able to do the things that need to be done quickly in such an emergency if we have not planned and thought about what we would do and made certain things ready “just in case”.

The flood issue struck close to home. We live in an area close to one of the Great Lakes in the USA, and there is a river through the heart of town, much beloved, tamed by no less than 4 dams in regions above town and in the middle of town as well. If one of those dams broke, would/could the others follow? The government agency that inspects the dams says they are reaching the end of their span of usefulness and they are not completely stable. I have been thinking about what we would do here, if there was a flood situation and we had to be evacuated.
We have important papers we would need to take with us. We do not have a trailer or access to one to bring large items with us. By the time we got our files, our pets, our clothing and medications, food and water for 3 days, sleeping bags, etc. we still would have to find a safe place to go, figure out a safe route to get there, and figure out how to proceed to live our lives from there.
I am making a check list and gathering things we might need into one area of our home, and packing up what I can ahead of time.

Something that might help you think about emergency preparedness is the usa government website ready.gov What possible threats are most likely to cause emergency evacuations near you?

I began to prepare for emergencies even before I knew of my autism. I lived in an earthquake prone area in the south of my home state and there had been a lot of publicity about “the big one” – a huge earthquake being possible on a nearby extended-area fault zone which had been inactive for well over a hundred years. I had small children and the stories of possible damage worried me. So I began preparations.

I packed an emergency bag for each family member, one complete change of clothing plus a couple extra socks and underwear, and shoes. Shoes are so important in case of night time evacuations and possibilities of having to walk in areas with broken glass, damaged buildings, down trees, etc..

I remembered to pack clothing that could be used as night clothes in a public sleeping situation. I packed a towel, washcloth, toothbrush, toothpaste, etc in the emergency bags (these were backpacks). I packed a comfort toy and non perishable snacks in the kids’ bags.

I packed a bag for the pets with collars/ harnesses/ leads, dishes, food enough for 3 days. I packed the contact number for the vet and included letters for “permission for emergency treatment” as well as all health records for the critters.

I packed food and water for 3 days for each family member as well.
I made sure we had copies of our birth certificates, our social security numbers, emergency phone numbers (family, friends, etc we would need to contact in case of emergencies , doctors numbers, health records, records of all the places we paid our household bills, so we could terminate service, ask for extensions or help restoring services, tax records, etc.
Insurance cards and copies of plans plus contact numbers went into the bags, as well as all the contact numbers and account numbers for the bank, credit cards, etc etc.
I got extra prescription drugs for family members and put those in the bags too. I had a little first aid kit and a small radio that ran on batteries, flashlights and extra batteries. I had sleeping bags and blankets and pillows stacked and ready to pick up and put in the car.

I began to be very conscious about the level of gas in my car’s tank.
If we had to evacuate I had seen the television and news articles showing long lines with waits for gas and people’s cars abandoned by the side of the road due to running out of fuel.

Especially if you live in areas that are prone to ‘weather events’ or known hazards, please consider giving yourself a huge advantage by insuring you are ready ahead of time as well as you can be.
Emergencies can happen at any time. They happen to everybody.
Being older and autistic does not mean we can not give ourselves the accommodation of being ready to react and save precious time and perhaps our own and /or our loved ones’ lives.
I do not dwell on scary thoughts surrounding these “what if” scenarios, but I have peace of mind knowing I will know what to do if the time ever comes that I am called on to act and react quickly for safety and well being of my household.
Do you need an emergency plan? How will you respond?

Grief and Autism

Defining grief and discussing feelings of loss and sadness surrounding Autism

This is dangerous ground. Issues surrounding Autism are sometimes very political and raise great emotional reactions. Ideas about grief are among the most controversial, discussed, ranted over, rage-raising and distressing issues on many autistic forums and blogs today. I am about to try to sort some of the controversy, anger, shaming, blaming, and distress. Instead I might inadvertently add to it, who knows?

I spent hours reading definitions of grief preparatory to writing this.
Grief can be explained as a normal or natural reaction to loss, deep sorrow in reaction to change of any sort, the usual being over loss of a relationship due to death. There are also aspects of grief in loss of expected outcomes or change of expectations or plans .

Grief is not simply feelings of loss, but also a ground for conflicting feelings of guilt, anger,sadness, relief, or release. We can feel sorrow over the loss of a parent and still feel relief over their release from suffering, from the difficult behavior or painful relationship, and feel guilt for feeling the accompanying sense of freedom. All of that is part of grief, and there is often much more.

In natural cycles of grief there can be stages of denial, anger, bargaining, depression and sadness, and acceptance. These can happen in stages, and can be repeated over and over in any order, sometimes simultaneously, other times remaining in one stage for long periods of time.

Many people may need support and counseling or therapy to help with grief. It is not uncommon for adaptation to be incomplete or adjustments to be unhealthy in our search for consolation , solace, and peace over our place in the midst of our losses.

The thing that brought grief to my attention was the third reading of Tony Attwood’s excellent book on autism. “The Complete Guide to Asperger’s Syndrome.”

I read it through the first time when I suspected my autism but was not sure. I thought much of it was written only about children and did not see how much of it applied to me. Then I read it again and recognized so many traits and experiences of my own from my childhood (looking at it and comparing it to my younger self). The entire book read from the aspects of my own childhood was filled with “aha” moments.
I was amazed and so interested… it explained almost everything about my early life. This was it!

The third time I read the book, something very strange happened. As I read those descriptions of childhood struggles I had the urge to cry uncontrollably. I felt sadness and loss and immeasurable helplessness and confusion. I was re-living my childhood emotions. I felt the feelings I had felt in all of those impossible situations from my childhood, the guilt, the anger, the sorrow, overwhelming sorrow and sadness all wrapped together in one experience, each situation the author described bringing forth a flow of memories of similar situations from my childhood, adolescence, and teen years.
The most predominant of these was the deep sorrow I had for myself and my struggles.
I experienced this feeling for most of my life. Feeling nobody understood, nobody cared, I was lost and helpless, feeling I was the cause of everybody else’s troubles. I remember being told over and over to stop feeling sorry for myself. I remember wailing ” I don’t know how” .

I can remember so many tears and so much distress. I remember begging for therapy, a counselor, for somebody to help, and being told repeatedly that “there is nothing wrong with you”.
I just needed to shape up, to get with the program, to shake it off, pull myself together and TRY..to do right, to be good, and to stop being selfish and bad. I never understood how I was supposed to do these things, but I was to do them by myself by willpower and strength of character. The feeling of futility was immense.

OK, back to grief. I believe I was trapped in grief and despair. I knew I needed help and comfort and that I was not ever ever going to get. I had a need for understanding and compassion for the struggles nobody seemed to understand, and took for deliberate willfulness and acts of evil. I needed explanations, insights, support and directions, I needed details of almost everything explained in depth . I knew I was not going to get them in my home situation.
I came to the stage of acceptance eventually, but the underlying sadness was there throughout most of my childhood and young adulthood. I spent my early day to day life not only in fear and dread of any interaction or mistake I might make, but also in grieving for the things I was pretty sure others had somehow obtained but that were forever out of reach for me.

Grief for loss of loved ones is called bereavement. It is a reaction to losing through death, divorce, separation, life changing disability or other circumstances. I have always processed this sort of grief more easily because the “why” factor is usually evident. The loved one died, had health changes, was no longer in love , moved far away, all concrete facts that don’t have that “why” factor.

Now we come to an opinion that is not popular with many autism groups. There is a huge backlash against parents of autistic offspring who lament online that their children are suffering and wish that they were not autistic.
I find the anger of some autistic people may be misplaced because the distress the parents are showing is at their own helplessness to help their struggling children, some of whom are very heavily afflicted with many of the worst features of autism.
I think it is natural grief that is showing, however poorly worded in forums or blogs. The parents are truly grieving because they see all sorts of things that they have been helpless to prevent and to aid.
There is a loss of expectations for a normal childhood and adulthood, a loss of dreams for a bright future, a loss of the idea of “what it was supposed to be”.
I understand the angry autistics’ reaction to the spoken wishes of so many parents saying they wish the child had not been born, that they wish the child was not autistic, etc.
In many cases such children are killed by their parents. In many cases children are abused by their parents.
In times of the past and today, many wish for elimination of pregnancy of a potentially
” damaged ” child , society of today deeming it is OK to select which pregnancy can be terminated , the demand is there for tests for autism as there is for down’s syndrome and other genetic conditions. To be an autistic child and hear that you are unwanted is probably a very common state. I heard it too. I understand the reaction against such statements. I understand the reaction against being told we are unwanted.
I understand the pain it causes in our own autistic hearts and I suggest that the anger we feel is grieving of our own over things that we have missed, have lost, have never known. I have no answers. Grief is part of the human condition and will be experienced by the vast majority of humans today. Grief has been the hardest to sort and understand of all the almost constant emotions of my life. Now with my new understanding of my own autism I am making progress toward sorting it out.
I have no answers but find it difficult to focus all of my rage on the parents in these support groups who are feeling loss of ability to help their children, who feel grief at the things they want their children to be able to experience or goals they will perhaps never attain. I don’t think it is realistic to blame the behavior of a few parents on all parents of autistic children, any more than we all recognize how unfair it is to blame ourselves for our autistic struggles, or the behavior of a few autistic people .
I may write more about grief and autism as I continue to sort and to understand. Mean time, I want to make a call for unity. Autism needs different perspectives of diverse people to continue to help us all understand the many ways we are affected, our needs, our self understanding, our struggles and our triumphs. I hope we can refrain from tearing other grieving people apart in our quest for “justice”, “fairness”, etc.
As human beings we are all in this together. Let kindness and not anger and retribution win this one.

Autism and ageing

Special hazards in ageing are magnified in autism.

I took some time this past summer to help a friend who had fallen and had to have surgery for multiple fractures that resulted.
Yesterday I heard from another friend that her husband had fallen getting out of the tub, and that she had fallen on the concrete walk outside their home.

I fell 2 years ago and did severe damage to muscles and tendons of one foot. It took months to recover full function.

I think you can guess where I’m headed with this one. All of us are over 60 years old, all of us were injured due to falls.

National council on ageing provides some information to put the importance of avoiding falls into perspective.

One in 4 people over 65 will have a fall this year.

Falls are the leading cause of fatal injury in those over age 65.

Falls are the most common reason for being hospitalized in the over 65 age group.

Do I have your attention now?

Autistic people may be at even more risk than the general population because of our struggles with seizures, poor proprioception, general poorer physical care and body condition, difficulties with executive function, and other autism associated struggles.

As any person ages, they become weaker, have problems with vision, slower reaction times, and other failure of our bodies to work as they used to. Health problems such as hypertension, stroke, heart disease, etc all make us more vulnerable to every day accidents.

What can we do to help ourselves live safely and thrive as we get older?

To prevent falls, we can talk to our doctors about our physical condition and medications that might interfere with coordination and balance or perception. We can ask for help in assessing our homes for safety hazards, as many senior programs are available today to help with risk assessment, therapy for balance and coordination, etc. Make sure your eyes get checked and that you have the right prescription lenses. If you have glasses use them, don’t try to get around the house without them!

We can ‘do it ourselves’ or ask family, friends or others to help us assess the risks associated with conditions at home.

Remove clutter from floors and especially hallways and stairs.

Provide safe footing on floors and in bathtubs and showers.
Remove throw rugs and look for trip hazards such as raised thresholds, step-up or down floors of multiple levels. Look for inclined or rough transition areas from one type of floor to another.

Use painted or bright colored tape to mark these places so that attention is called to these trouble spots if they can not be modified. Use traction strips or no slip mats for bathrooms and kitchens, and mark the edges of steps with bright color or white so they are more easily visible.

Be aware of porch and basement floors which can be so hazardous and slippery when wet. there are special textured paints which can be applied to most surfaces to provide better traction and add non-slip qualities to floors.

Wear clothing that is close to your body and does not drag (long cuffs, billowing legs or skirts of pajamas or hemlines of robes, trailing belts of robes, etc can all catch your feet, legs, or hands, and can be caught on projecting knobs, stair rail ends, or other furniture details.
Wear safe footwear.. no scuffs, socks, slippery bottomed slippers, bare feet, or thong type sandals. Shoes with non slip soles are better. Wear them from the moment you get up until you go to sleep at night, any time you are standing upright, wear those shoes !

Install hand rails and grab rails where they can help you most, bathrooms and stairways, long hallways, etc. You might need to use a walker or other assistive devices to help yourself rise from furniture or your bed. Your toilet might need a ‘booster seat’ and/ or bars on each side to make it easier to rise after use. You might even need lift/assist chairs or other electric boosters to help you rise from prone or sitting positions. Always use the hand rails going up and down stairs. Don’t carry things that require two hands up and down the stairs. Find different ways to get those things where you want them to be. Ask somebody to help or carry less at a time. Arrange things on one level as much as possible to keep from having to make trips up and down for things such as laundry, the freezer, or to care for pets etc. And be aware of pets around your feet as you walk or go up or down steps. Even if they were sleeping in the other room a moment ago, they will likely follow you closely if you move. ( you know that!)

Make sure you hide cords from lamps and other electrical devices so that they are not trip hazards. Make sure your pathways are lighted completely, no walking around in the dark! Use night lights everywhere you can. Make sure the pathway to the light switches in each room are clear. You might even use glow-in-the dark paint to make the switches easier to locate in the dark.

If you are aware that you are losing muscle tone or getting weaker, you might be able to get therapy or be prescribed particular exercises to do which will improve strength, balance, flexibility and grasp.

If you think this doesn’t apply to you right now, realize that it surely will apply as you get older. Think ahead about what you can do to ease the risks of injury or death because of falls, then please take action.