11 YEARS LATER -- PROGRESS? NOT REALLY

It's been a helluva month in the Autie marriage scene at my address.

My ASH  (that's acronym-speak for autism spectrum husband) got himself "dismissed" from the latest permanent job 30 days ago.

At least this one ended with one month's severance pay. Ask me how long it took him to snag that position -- umm, one year and 16 days. Welp. The severance pay isn't gonna hold out, is it?

In a karmic attempt to make my day complete I opened up the ole Gmail inbox and something unnerving came in. It was kind of miraculous, actually, since I hadn't received a freaking email, newsletter, update, follow-up call or any other form of caring contact from this organization for more than seven or eight years.

I gotta admit that I sarcastically mouthed the mission heading, "Celebrating Neurodiversity".
My acerbic wit and hilarity in the midst of dire circumstances seem to be evading me this year.

Anyway, I got over my pissy melancholy long enough to look further down their positivity-laden newsletter. Again, you saved my damn email addy all these many years, AS of Alabama... why did you suddenly send me this email after almost a decade of silence?

Here's the list of article links I found embedded in that email --

Consumer's log:
Wow, they've got several offices now... their headquarters in B-ham, along with a South Alabama, Mobile office and a phone number for North Alabama.

Wait a minute -- a phone number for North Alabama but no office? I guess that's progress, sort of.

I proceeded onto the typo-riddled article intro about "Insurance for Autism in AL" I mean, gosh, that's just great news, isn't it, now that all 3 of my freakin' sons are in their twenties and I bet that legislation will really help with my husband's employer? Oh, wait. He's unemployed again. As a matter of fact, he has not had employment-related insurance since uhhh, 1996 maybe.

Finally, I got reeled in by the "Roadmap to Alabama Transition Services: Guidance for Families" synopsis and I clicked that link with some gusto... this was the landing page:

I navigated right toward the third-row-down-left-column-"I-want-a-job" link.  There, the Autism Society of Alabama graciously described in a one-page PDF document how if my autistic self or family member were/was a recipient of SSDI or SSI Social Security Benefits and between the ages of 18 and 64 years old, that I/they could qualify for inclusion in the "Ticket to Work" program. This long-published information is accessible on SSA.gov and I reviewed this info like, umm, around 2010, y'all.


Moving forward, with dashed hopes and little in the way of leftover anticipation, er, I mean illusions, I clicked on the next tab to the right -- "I Want to Live Away from Home", thinking fondly of our 20-year-old autistic son who doesn't have a job or his driver's license yet,  let alone plans for independent living.

Feast your eyes on this page image below:

I tried clicking the blue type, hoping it was a hyperlink, but Noooooo! There's absolutely nothing but a blank page with a heading.

Why did they bother?

That's it, folks -- might as well get your Ruby Slippers on and click those heels. Yessiree -- there's no place like home, apparently, because AS of Alabama can't even manage to cough up a single shred of descriptive data, nary a link for all of us out here, desperately waiting for some help with that road map. There ain't gonna be no information for all y'all Alabama auties who don't wanna stay at Mom and Dad's for the rest of your adult years.

____________________________________________

Here's what I want to point out :

1. I'm almost done with the unveiled contempt, or at least, I'm trying to settle down here.

2. I used to 'believe' (think fairies, Peter Pan, clapping, etc.) in our Autism Societies, even having been designated a short-list Governor appointee for an Autism Task Force in our state.

3. I even started a fledgling non-profit agency 11 years ago to address the needs of transitioning teens and adults. Until my life was altered by Traumatic Brain Injury, I was quite conversant and knowledgeable about options and alternatives out there. Our state had next-to-nothing back then regarding available adult services and perhaps only a pittance more now, all these years later.

4. AS of Alabama, get a clue: it's not enough in 2018 to get some internet copy-jockey to post a couple of web pages on Road Maps by slapping up some really OLD and INEFFECTIVE links.  Such haphazard and lazy tactics can't possibly justify your lofty mission statements and certainly doesn't reflect appropriate balance of commitment when compared to your FUND-RAISING efforts.

5. Autism consumers, puh-leeze don't be fooled by such BS techniques, either. Numerous government-dole enrichment schemes utilize similar dime-a-dozen formats that thousands of grant-funded, non-profit 'agencies' use to engage in FAKE or barely realized service-sector programs, while guaranteeing themselves a substantial paycheck.

These agency 'storefronts' develop mission statements and purposes, hurk-up some grant proposals to conduct a single survey or create a whitepaper with some snazzy infographics, replete with demographic data justifying their hypotheses. Then in a final travesty of justice they complete their 'research' and post their results on a website that appears they paid some hoodie-clad, Zuckerberg wannabe IT dude to build for them.

Hey! At least that means occasional employment for one of our own.

Sadly, somebody gets to pay (in spades) for autism agencies engaging in such flaccid and spineless web-posturing. This is an egregious offense to the dire needs of families and individuals affected by Autism Spectrum Disorders.

I wrote about my plans and dreams to serve autistics in 2007 -- I had a comprehensive and descriptive website built and published in 2008, with numerous links and information regarding QoL (service-sector acronym for Quality of Life) for transitional teens and adults on the spectrum.

I provided ad hoc information and referral for anyone that contacted me for help.
By the way, I never got paid a red-cent for my services.

Oh, and I almost forgot -- I created two additional blog sites. Here's an image from the inaugural article of my Live with Autism blog --

Road Maps Sharon Howarth blog Nov. 2007

Yeah, that's right. I offered my road map 11 years earlier.

AS of Alabama, how come it took you so long to post yours?


Here's their 2-page whitepaper (!) at the "I Want to Make My Own Decisions".
WARNING!! ASD self-advocacy alert: this is completely stigmatizing and offensive.

Autism Society of Alabama whitepaper


Even worse, here's my screen capture for their "I Want to Stay Safe" resource link page.

Note that such an important subject query leads to another BLANK PAGE.

Sigh.


Oh, just in case you think I'm being unduly hard on our state Autism Society, here's a link to my posted reply taking on the CEO/director of our American Autism Society a few years back.

Open Letter and Response to Autism Society of America President


And, here's my own humble infographic on QoL for adult autistics per recent demographics from several autism statistical sources:

There are few happy endings for adult autistics who are struggling daily for basic services let alone living wages to achieve a modest quality of life and independence.

I've given up clicking my heels and I can't afford to feed a service dog for a family member, let alone access health care or adequate housing.

I wish I was in Oz, right now.

Autisics: Are We The Puzzle Or The Answer?

I was profoundly offended today, by a professional Vocational Rehabilitation Counselor AND her secretary, both failing to enlighten or encourage me by informing me in a phone call that my 22-year-old autistic son who is now dealing with a roller-coaster-rocking, G-force imitating, grand mal seizure disorder was, and I quote now, “an irresponsible young adult” for not keeping in contact with them during his multiple hospitalizations, accidents, medical appointments and life-harrowing seizure events.

Thus we have the following rant, now included for all posterity in this my humble tome.

Mea culpa.

I am autistic. While I am not a trained and credentialed expert in the field of autism, I am certainly an expert with regard to my autism, my husband’s autism and our sons’ autism issues.

To mediate this lack of training and credentials I offer the following: those of us in the autism world have sometimes noted that, “if you’ve met one autistic, you’ve met one autistic.”

We are all so individual, so uniquely gifted and profoundly affected by our special natures and personalities. I cannot speak for all of us, but many of us are deeply offended by the imagery of a puzzle referring to our developmental differences.

We are not the puzzle. YOU, neurotypical-world dwellers, YOU are the puzzle that we are decoding.

I am honestly puzzled. I am riddled with hurt and rancor over the ridiculous display of ignorance I was exposed to today by some individuals who could certainly claim they are higher-functioning than my autistic son.

I have this to say to those ladies and to a number of neuro-typical, able-brained citizens who just don't get how small-minded and base their functional little personalities might be: 

Sometimes you are RUDE, OFFENSIVE, IGNORANT, BIGOTED AND FRANKLY PROFOUNDLY IDIOTIC IN YOUR LACK OF SELF-AWARENESS IN THE WAY YOU TREAT AUTISTICS AND THEIR FAMILY MEMBERS.

Yet you suggest that we autists of the world are the ones who don’t follow the social graces!

The plain truth is that many of you who are not differently-abled, have no clue how to assist or even appreciate the power and capacity for greatness in the autistics around you and many of us pity your rigid adherence to your self-limiting affinity for normative means and lack of expansive creativity as you “approach” helping us.

Many autistic persons around the world will laugh and cheer raucously as they read this and agree with me– We are not the puzzle.  We are the A-N-S-W-E-R to the puzzle.

Here is a perfectly apt example demonstrated by a heroine from a differently-abled camp. 

Our family lived for thirteen years in the northwestern part of Alabama near the world-famous birthplace of Helen Keller in Tuscumbia, Alabama, so we are keenly aware of her story and her impact. 

Tens of thousands of people come to that area annually to celebrate a world-renowned festival dedicated to her name and her fame.

Helen Keller wasn’t puzzling before she learned to communicate, indeed the world around her was far more puzzling to Helen than she was to her world as she was momentarily unable to express her needs and desires to its members. Helen sometimes impatiently waited, to the best ability of a young child, for the brilliantly expansive mind and tenacity of an Annie Sullivan to finally listen to her, to find the way to receive her brilliance. 

Helen Keller ultimately “saw” and “spoke” of ideas and concepts that were considered to be unmitigated genius and substantive inspiration for millions of her contemporaries and generations to come after her. Consider the lesson of such an irony: the child who could not ask for anything during her momentary silence, became the great stateswoman and spokeswoman to the people of this world who lined up and paid for her to speak to them!

Where are the Annie Sullivans who will just sit down at our tables, confront the challenges between us and work to break through the communication differences we have with the norms this world keeps demanding we accommodate ourselves to? I pray I am one who bridges that gap. Why don’t you listen to what I have to say for awhile and see if we can’t agree on some things?

With that stated, I have one response to those rehabilitation professionals who so ignorantly and callously maligned my autistic son:

Irresponsible, my eye!

 

Autistic Cliff: Goodbye Asperger's, part 2

For all here who are Microsoft Windows savvy PC users, you will likely remember the Windows Vista debacle as I do: Windows Vista was, at its zenith, a nightmarish software-hardware interface that was foisted on consumers, even while it contained massive flaws and an inevitable predilection for failure. The programming gurus at Microsoft demonstrated a new achievement in planned obsolescence, daring to subject captive PC consumers to Vista’s junkyard programmer sensibilities.

Here’s the most concise expression of consumer frustration I found on this subject. I recall one day several years ago I noticed a sign in the window of the local printing shop while navigating university traffic:

“NOW OFFERING UPGRADE SERVICES FROM WINDOWS VISTA TO WINDOWS XP OPERATING SYSTEM”.

Wow. That made the point for me. Frankly, I seriously considered throwing down a Ulysses S. Grant on their counter to reverse the operating system clock.

Similarly, the upcoming release of the DSM-V ‘s long-awaited changes, has not escaped some stink-hitting-the-fan.

In an April 29, 2013 position article, the National Institute of Mental Health’s director, Thomas Insel, M.D. had this to say:

“The strength of each of the editions of DSM has been “reliability” – each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity… Patients with mental disorders deserve better.”

Insel’s and the NIMH’s primary concern about the DSM-V’s ‘validity’ is found in their complaint of a lack of credible, clinical and physiological research to accompany the diagnostic determinations that the American Psychiatric Association’s bible define. full article

In his May 4 Psychology Today blog piece on the NIMH’s position, Christopher Lane, PhD states, “what the NIMH is offering as a solution [to] the DSM’s fumbles and errors is not without major problems of its own…”, citing the Institute’s weighted focus on biological and physical components of mental disorders, to the possible exclusion of anecdotal and symptomatic factors.  full article

The DSM-V committee has done some serious hacking of their own, excluding Asperger’s Syndrome as a diagnostic term and a diagnostically distinct entity.

This single-handed swath of the diagnostic sword, has brought confusion and rancor to an entire segment of the Autism Spectrum community of consumers and family members, accompanied by the consternation of many clinical specialists as well.

What DO Asperger’s individuals do now and where will these sweeping invalidations take our community members?

A major focus of concern: funded care and provisions for clinical assessment, adult housing and supportive services. I shudder with trepidation as I consider how the Social Security Administration’s disability determination criteria will ultimately change the daily lives and survival of unemployed and un-accommodated autistics.

While these academicians have their caffeinated-board-room-discussions about the viability of various ‘terminologies’ and ‘clusters of disorders’ such as binge eating , how often do they discuss the outcomes of their pyrrhic positing over our very REAL lives and sustenance?

Now that’s a definition I’d really appreciate a diagnostic determination for. How shall we, the autism community, defend ourselves and define such cerebrally capricious characters?

Perhaps I should start saving my Belgian chocolate bar wrappers to help with documentation for my upcoming disability determination.

AUTISTIC CLIFF: Goodbye Asperger's/PDD-NOS, Hello Autism Spectrum Umbrella? Part 1

I don't generally post Autism news and links here, reserving such news and information for the infozine Autism Media Report site, for which I am editor.

However, this information is too globally important for me NOT to address these issues here.

If you and/or a family member are an Asperger's or high-functioning individual on the autism spectrum, better plan to fasten your seatbelts.

Many of us are in for quite a ride in 2013 and beyond, thanks to the sweeping changes to the American Psychological Association's Diagnostic and Statistical Manual's version V of that diagnostic bible. 

In Part 1 of this series, let's get up to speed with the news and the discussion. Here are some headlines and links regarding the DSM-V's empirical destruction of the world as we (aspies and auties alike) know it. While some of the articles are a year old, they are presented here as part of the background on the broad and devastating changes that are scheduled to occur beginning in May 2013.

Just In: Aspergers Prevalence Predicted To Fall To Zero

Emily Willingham, Contributor

 

9 comments, 4 called-out

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Autism (Photo credit: Wikipedia)

Today, I was one of four people speaking on Forum with Michael Krasny, on KQED (Northern California Public Radio; listen here). The big news and the show’s focus is that Aspergers (and the less-mentioned, PDD-NOS [pervasive developmental disorder-not otherwise specified) will no longer be diagnostic entities in the DSM-V, the guide clinicians theoretically use to diagnose these developmental conditions...

Full article here

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From KQED's website -- http://www.kqed.org/a/forum/R201212040900

Asperger's Syndrome Removed as Official Diagnosis

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Tue, Dec 4, 2012 -- 9:00 AM

The American Psychiatric Association voted this weekend to remove the diagnosis of Asperger's syndrome from the so-called bible of psychiatry, the Diagnostic and Statistical Manual of Psychiatric Disorders. People with Asperger's will now more likely be diagnosed as having autism spectrum disorder. The APA says the change will lead to more accurate diagnoses for people with autism -- but critics say removing the diagnosis may result in fewer people getting the services and care they need.

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GRASP, the Global and Regional Asperger Syndrome Partnership has posted this facebook permalink to their action alert :


GRASP Action Alert on the DSM-V

by GRASP on Thursday, January 19, 2012 at 5:27pm ·
http://www.facebook.com/notes/grasp/grasp-action-alert-on-the-dsm-v/331472563552863

[excerpt]  "...In a report being published in tomorrow's New York Times, the DSM-V committee appears to be acting in consort with clinicians who believe there is a presence of “over-diagnosis” of spectrum conditions in the U.S. While the clinical world was merely adhering to the requirements proposed in 1994’s DSM-IV, the DSM-V committee inexplicably seems to want to reverse the clock back to 1993, simply because the social services, educational, and advocacy worlds are not yet able to accommodate the numbers of people who are on the spectrum. Oddly enough, we believe that the majority of the clinical world does not believe in problems of “over-diagnosis,” and that the DSM committee surprisingly represents a minority opinion (most, if not all members of the committee have worked exclusively with only the more challenged end of the spectrum). Lastly, the ideas of “over-diagnosis” are almost always heard through bitter, emotionally-unhealthy tones; revealed as theories that are usually the product of people too afraid to admit how dumb we all were prior to 1994..."

Here is an excerpt from the NY Times article GRASP references:

New Definition of Autism Will Exclude Many, Study Suggests

Todd Heisler/The New York Times

Mary Meyer, right, of Ramsey, N.J., said that a diagnosis of Asperger syndrome was crucial for her daughter, Susan, 37.

By BENEDICT CAREY
Published: January 19, 2012


Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests...


...The psychiatrists’ association is wrestling with one of the most agonizing questions in mental health — where to draw the line between unusual and abnormal — and its decisions are sure to be wrenching for some families. At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.



The proposed changes would probably exclude people with a diagnosis who were higher functioning. “I’m very concerned about the change in diagnosis, because I wonder if my daughter would even qualify,” said Mary Meyer of Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously... full article here

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Finally, this ASAN (Autism Self Advocacy Network) policy paper on the implications of the changes:

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While ASAN expends well over 65% of their policy paper dealing with IDEA and student-age impact evaluation in their , they do manage to identify this sobering opinion regarding adults whose Asperger's or PDD-NOS diagnoses would be altered by the Autism Cliff :

"A shift in diagnostic practice …would diminish access to both SSI and SSDI cash benefits and public health insurance..."

This now leads us to my husband's and my current quality-of-life quagmire--

Will his SSDI/SSI benefits, his ONLY source of benefits/financial resources for over TEN YEARS, be cut-off in the wake of these deleterious and amorphously subjective changes to recommended diagnostic practices?

It's as though we have just been time-warped back to 2001, when he was facing diagnosis and considering the long journey toward adaptation and accommodation of our lives in the neurotypical world we were already NOT successfully navigating.

Consider the following issues we just became aware of this morning, while reading the latest news--

1. We are starting over, now trying to DETERMINE potentially what his disability status and diagnosis should be.

2. We are uncertain of the economic and vocational impacts of an unknown autism spectrum diagnosis in his future.

3. We are expending needed energy on issues which, only weeks earlier, were not present in our lives, instead of building toward future adaptive and accommodated employment initiatives, as we were previously engaged in.

4. Will the fiscal purses of states like ours, now be hit with additional diagnostic costs due to our entire family of affected autistic members needing updated diagnostic evaluations? If only 50% of the estimated 30,000 autistics in our state need re-diagnosis, that would conservatively cost our state a minimum of 3-million dollars! Will we be able to get funding for such repeated evaluations?

Guess which medical provider sector will likely profit from the need for updated and repeated diagnoses? Yeah, the same American Psychological Association practitioners who established the new DSM-V criteria.

The impact of the DSM-V's committee vote is already being felt in this Alabama autistic household...

Part 2 of this series won't be any sunnier-- the outlook appears rather grim.

CNN's Banfield and John Kerry: Staged Portrayals Re UN CRPD Disability 'Rights' Treaty ??

Opinion- Editorial 

Sharon Howarth
Thursday December 6, 2012


Today, in a video segment on CNN, Senator John Kerry prosecuted his personal agenda saying that  former Senator Rick Santorum was "not factual" about the far-reaching negative effects of ratification of the UN CRPD 'disability rights' treaty when in actuality Kerry was engaging in his own fallacy promotion by rendering an ignorant position on constitutional and public international law.

Alex Newman, foreign correspondent for The New American, described the treaty in his December 3, 2012 piece as “a deeply controversial United Nations treaty on disabled people, dubbed the UN “Convention on the Rights of Persons with Disabilities” (UN CRPD), which critics say represents a serious threat to American sovereignty and certain unalienable rights.” The New American

Excerpt of Kerry's statements below --

December 5th, 2012

08:35 PM ET

4 hours ago

Kerry blasts Santorum's opposition to disability treaty

Posted by

CNN's Gregory Wallace

(CNN) - Sen. John Kerry fired back Wednesday at former Sen. Rick Santorum's strong opposition to a U.N. treaty promoting the rights of the disabled that failed in the Senate this week.

"Rick Santorum was just not factual," Kerry said on CNN's "The Situation Room."

view the complete article here   

Kerry 'co -chaired' the Senate Committee on Foreign Relations' evidentiary proceedings -- ummmm, actually he was ABSENT for much of the hearing, stating his apologies for such, as he wielded his gavel to convene the proceedings and then divulged that he had pre-arranged a substitute co-chair due to a "prior commitment"!

However, Senator Kerry WAS present during the expert testimony of Dr. Michael Harris, Chancellor of Patrick Henry College, where Harris also teaches constitutional and public international law. Kerry's presence and verbal exchanges with the constitutional law expert, leaves him with no excuse for his deliberate attempts to mislead the public during his statements on the CNN video clip, as he opposed Dr. Harris' position on the legal precedents of the treaty's potential to usurp U.S. sovereignty, states' and individual citizens' rights.

Compounding the Orwellian 'new-speak', CNN talking head, Ashleigh Banfield, ate Kerry's video bait and then regurgitated it as she metaphorically pointed her boney finger at the camera, aiming her own potentially career-boosting op-ed shot toward viewers, on the subject of disability rights.

The only thing missing was a "tisk-tisk" from blonde-highlighted Banfield's glossy lips, who in my opinion, possesses the journalistic integrity and sincerity of a Madison Avenue ad-exec.

For just one moment, gun-control sounded like a good idea to me, as Ms. Banfield ignorantly shot her mouth off, presumably with CNN's blessing.

In contrast to this latest CNN media debacle, Bob Costas made a tactical mistake and at worst, he misused his position to promote the political elite's agenda. Costas, at least, had a genuinely earned position from which to speak during his NBC broadcast, 90-second diatribe on gun-control.

C'mon CNN! Ashleigh Banfield providing commentary on disability and constitutional rights and public international law? I seriously doubt that this pretty talking head was actually elucidating her own statements on the subject. Instead, her teleprompter words were likely composed for her segment by producers and writers sanctioned to perform such scripted editorial positing from the powers-that-be at CNN. She proved in her segment this morning, that she is nothing more than a CNN lackey.

Banfield might do better for herself, pursuing her acting career in Hollywood, rather than in the television journalism field. Does anyone recall her embarrassing and ludicrous portrayal of Christiane Amanpour during Ashleigh's Middle East coverage, in a pastel-toned burka?

Well, John Q. Public, I guess Ashleigh's just glad she's got the job and can pay for all those designer glasses she wears. I bet they're tax deductible too.

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".

____________________________________________________________________________

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...

Summer Surprises and Other Ruminations

Wow-- I've been pretty preachy lately, intoning my elevated and academic writer's voice in the past several blogs I've posted.

Forgive me. Let's chalk it up to a from-the-hip diagnosis : MMAD syndrome, menopausally maniacal advocacy disorder, otherwise known as 'Mom's MAD'.

Now, free of that behavioral burden, let's dish about summer.

How was yours? If you spent it with an autie or aspie family member, you don't need to tell me how busy you've been.

But did you get to spend a few lazy, sunny days on the beach or sit on the porch or lay out by the pool? I truly hope so-- I'm certain you've worked hard and deserved to pamper yourself a little.

If you actually went on a real vacation, I'm truly happy for you and I promise I won't be jealous either.

Have you noticed how the older we get, the shorter summer break seems?

At 15, I felt that my June 1st through Labor Day vacation was endless and full of the promise that an unlimited time-frame can offer. I recall that I could hope for almost anything to happen in those magical, sun-infused months.

Not only did I dream of having the darkest tan of anyone in my high school ( unrealistic as I am a celtic roots, slightly-auburn-haired-Irish-cream-skin kind of girl), I was also able to convince myself that I could entirely remake my stubbornly hourglass hips, my social life, and my profoundly dysfunctional family in one summer!

Ahhh, youth...

More recently however, I've gradually lowered my expectations of summer -- maybe too low, in this constant-crisis year I'm dealing with.

I woke up the past few days to the southern heat and haze of August and after dark, I've noticed the neighborhood crickets' volume going up and their tempo slowing down-- late summer has already arrived!

This saddens me and reminds me that I've totally lost the season of my boys' childhood. Just two weeks ago, when I pitched the formerly well received concept of a picnic at the park, they groaned, "awww, Mom there's no wi-fi at the park."

I made them go anyway, if just to blanket their white flesh with a few moments of real, live sunshine.

There we were, our family foursome eating our home-made, um, I mean, carry-out fried chicken dinners, by the Tennessee River. It was a lovely mom moment. I sighed with fulfillment--my husband and my boys seated around me were framed in the laced sunlight of late afternoon trees, and then...

my 18-year-old son asked if we could go home, just as he finished throwing dinner down his throat.

Maybe he wiped his lips with the napkin, but I can't remember.

I was recovering from the shock of my own altered reality.

There are only rare glimmers of our former life-- you may recall reading previously that I was a home-birthing, demerara-sugar and home-made-carob-cake-earth-mother, before autism, revealing itself through a geographical ministry relocation, moved into our household of six kids, ultimately producing two very weary Aspie parents.

A few weeks ago, my 13-year-old did mention that we haven't gone to the pool yet this summer and while that comment seemed to portend some promise, all hope failed, days later, when I suggested he accompany his adult sister and niece to the pool. He quickly informed me that he "preferred to stay on the couch and play" his favorite online game.

I had to force him to go outside and ride his bike recently, by using the excuse of entertaining his visiting niece thus manipulating him to play outside! This is my youngest child who used to LIVE outside.

It's my fault, really. I've been sitting in my office chair daily, for much of this summer, trying to drum up free-lance web, video production and writing work to keep us in a few luxuries like food, electricity and housing.

So I understand their de-motivation. They're just doing the parallel play thing-- mom's hips are getting wider while she's sitting at the computer, so we'll be Aspie-cave-teens and do the same.

Meanwhile, a slowly creeping realization has overtaken me-- my physical and relational world has gotten much smaller while my virtual fellowship of friends and my online vocational and social opportunities have grown exponentially.

OMG, I really am acting like the Aspie, I've been told I am. I am getting more aspergated...

and, I haven't sat outside on the porch at all this summer. I haven't seen friends at gatherings, haven't gone on a single camping trip or outing to the pool, or an outdoor concert, 

while I have grown more excited by the day with my virtual and tech-production pursuits. 

[cue: play theme from Psycho movie, to distant sound of female shrieking in her home office]

Even worse, I sent my husband (who graciously doesn't mind helping at all, dear, beloved, man) outside to grill chicken! Unlike the stereotypical men of our southern climes, my Bruce doesn't grill and especially not chicken because we don't like salmonella poisoning. He often doesn't know what "done" means in poultry terms.

"Neurotypical Earth to Sharon...do you read me?"

So... breathing deeply...and trying to refocus...

I've made a small decision: for the next few weeks, I'm going to put on my Deep-South requisite flip sandals, take my laptop and my butt out on the front porch, wave at neighbors driving by, walk in the park at least two times each week and maybe, maybe, we'll make it to the pool this weekend although I don't know if my swimsuit will fit.

We all need and deserve a little break in the routine and a little sun on our faces, don't we?

I mean, they're going to close and winterize the community pool in a few more weeks!