Saturday, November 17, 2012

A Window Into My Autistic World

Since most of us know and accept the age-old adage, "a picture is worth a thousand words", I hope this will speak volumes about our current quality-of-life as a family affected by autism.

Sometimes, despite our best efforts, we must face that our lives are defined by the things we have and how they affect the standards of our daily existence. However, in our case, the typical western, privileged understanding of 'status' might not be applicable.

Think of this as your personal opportunity to move into my home for a day and enjoy your own front row, "day-in-the-life of Sharon Howarth".

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I start my day by checking out the weather to see what temp it will be today and how I should plan my wardrobe--


Temp on left is the highest our indoor temp will get in fall-winter months. Temp on right is left over setting from before our utilities were turned off in the summer. We tried to be economical with the a/c, finding 83-degrees was much more comfortable than the 95+ degrees we experienced in August as we finished out the summer with no electricity.


Of course, in winter, we enjoy our portable household heater aka 'electric blanket', especially when we sleep in the low-to-mid 40's every night.



'Warm shower' : heat hot water in electric tea kettle plugged into gracious neighbor's extension cord, mix hot water with cold in bathroom, transfer to sprayer and voila!, warm shower.


'Hot water heater' : when propane is available for outdoor grill, fill water heater with potable water, fire up that grill and wait for water to boil, about 10-12 minutes, depending on outside temperature. Carry into bathroom, pour into stopped tub , add cold water to relax in a warm, 2-inch deep bath. 



Stove:A hot breakfast can always provide a good start to your day! Just remember, 
1. Unplug the fridge then replug it when done cooking
2. NEVER use more than one hot-plate burner, electric kettle or griddle at a time
3. PLAN WAY AHEAD - since wattage is substantially decreased by using gracious 
neighbors' long extension cord, cooking process takes 2-3 times longer than normal. An added bonus-- the unused surface provides additional counter space for the small appliances and the oven is now great for extra storage!



'Refrigerator' : That thing you have to unplug anytime you need to use any other electricity from the gracious neighbors' extension cord...also handy for refreezing any scraps of leftover food to be turned into meals when desperate. No broth, bone, bread heel, or small amount of anything else, can be wasted. The freezer is handy for this purpose, as well as bringing perspective to the family on cold days-- when really discouraged, open freezer, place your head inside momentarily and realize that 'it's not so cold inside the house'!
'Cold Storage Room' : otherwise formerly known as the dining room. An added boon to having indoor temps at 45 degrees average during the fall-winter months. Another benefit-- no need to put away donated food from generous pantries since the food is easier to see near windows and keeps cool anywhere! 



'Energy -saver microwave' : low-wattage unit due to dimished power from gracious neighbors' long extension cord! Good for gradually reheating warm drinks for those cold fall and winter mornings. Don't forget to unplug fridge while using wave in 1' 30" intervals, since longer will trip breaker on outlet strip!! DON'T FORGET TO REPLUG FRIDGE WHEN DONE!





Having a dishwasher is truly a luxury: note the adaptive electrical cord I added in order to plug the dishwasher into the now infamous, extension cord. DON'T FORGET TO UNPLUG THE FRIDGE AND ALL OTHER SOURCES OF WATTAGE! NEVER RUN OVERNIGHT! DO NOT USE 'HEAT DRY' SETTING !


At the end of our day, we appreciate having ambient lighting in the bedroom. We have been certain to use energy saving fluorescent bulbs in order to insure that we can leave the refrigerator plugged-in. Who knew? Low wattage energy-saver bulbs prevents food borne illnesses! We had a total of three different bulbs in the house this summer in order to light the entire house-- we have truly gone green!


Pajamas: Just as at the start of my day, choosing appropriate wardrobe is important to sleeping comfortably-- I like to dress for bedtime in layers, two shirts, jama pants, double-thick socks, then jacket, warm hat and hand warmers (as shown above). Toasty, color coordinated and very reminiscent of that holiday classic ("...mamma in her kerchief and I in my cap, had just settled down for a long winter's nap").

'Portable nighttime task lighting' : Easily transported from room to room, adds a lovely organic fragrance if using soy candles with botanicals. Also great for adding a touch of romance in the bedroom to counteract the effects of body odor from infrequent showers and the unattractive nightwear required to avoid hypothermia! 


'Low-cost Antidepressant' : I find that sometimes I just need a little 'help' to take the edge off of my stressful days, and this just does the trick. 1-2 squares on a bad day, and this large bar will last for up to 7-10 days! Taken with hot ginger tea, you will fool your mind and body into a sense of warmth and well being for sweet dreams all night long.



A few additional pointers :

1. When folks ask about your plans for the 'holidays' don't say "keeping warm and well-fed" as your answer, as they won't take you seriously anyway. This is America and true Christians can't be homeless, hungry and cold. Jesus wouldn't allow it, nor would Kenneth Copeland.

2. Always, keep a smile on your face-- "you can't catch flies with honey", however, most Christians will swarm like locusts to attack you if you are needy and admit to it.

3. Always say thank you for any free food you get-- it doesn't matter that you are allergic to wheat, soy, corn, oats, milk, cheese, eggs, peanut butter, msg, gluten and above all, pork! I just regift most of what we can't eat to other poor families or back to another local pantry. When I was in a church fellowship, I also used food I was allergic to, for cooking potluck dishes to bring to the obligatory Wednesday -night junk-food, fellowship dinner.

4. Treasure those few who sincerely ask you, "please tell me, what do you really need me to help with?"  Give eternal thanks for those precious few who care enough to realize you might need toilet paper, an offer of a hot shower, or a visit to their warm home to wash and dry a few clothing items in winter.

5. An amazing realization: those who most often offer sincere and needed help are those who have been there themselves. Once you've done without, it's funny how you can recognize those in need, right away.

6. Try not to lose track of your daily dignity and your daily structure-- try to keep up with self-care, something fun that you enjoy (apologies to those of you who think that the unemployed and poor shouldn't take time to relax and have fun because that makes them 'lazy' or 'under motivated'). 

7. Above all, don't fall into the trap of isolating-- if possible, at least try to get out among others and walk around the mall, a bookstore, even Wal-Mart, just to recall your former life of privilege and plenty. Tell yourself, " I will not be in this state forever. I am so grateful for what I have now. I will find a way through this and it will make me stronger."

I'm prepared for some of my acquaintances to get angry and blame me for my problems (as it happened previously when I wrote several months ago about our poverty and creative attempts to secure employment). I really didn't expect to be mocked and ridiculed for asking for referrals and encouragement in an entrepeneurial employment plan we were trying to develop!

Do me a favor-- if you want to fuss and blame us, telling us we are privileged autistics because we can communicate with normal language skills and semi-neurotypical social skills, just keep that to yourself and make a donation to your favorite autism advocacy organization so you can feel good about helping more deserving autistic families than ours.

We don't need any more friends to tell us we're just lazy, crazy or manipulative, if you don't mind.

But, if you'd like to know the back-story on our family's current lifestyle and employment issues, send me a request in the comments below...