Stoned and Unemployed

My husband was downsized in October. If you haven't heard, the employment front is not a positive outlook these days. Since there are hundreds (literally) applying for the same job, the employers have raised the bar on expectations and credentials. Being able to cherry pick every candidate that is chosen to actually come in through the door for an interview has left many frustrated and dependent on unemployment benefits.

Families, like ours, are struggling across America. Since I currently stay home with the children and head my daughter's treatment for a diagnosis of autism, we have been left without insurance. When Cobra was offered to us it seemed unreasonable, yet alone unattainable when we were going to be surviving on unemployment. Frankly, we hadn't used medical services for ourselves in the past 15 years, so we were not concerned much. We would continue taking care of ourselves as we have and hold out until he found another J-O-B that would offer benefits.... but of course Murphy's Law must rear its ugly head in desperate times...

Eleven days ago I was walking through the house when I suddenly had a sharp pain in my back. I initially thought that it must be a tight muscle from laying on the couch for the past two days with a head-cold.... until I ended up rolling on the bed with pain as intense as back labor pains!! When the words, "Call an ambulance!" flew from my mouth the instant expression on my husband's face said it all. Certainly, if I was asking for medical intervention it must be serious... then I saw the wheels turn and he started to pace, "We have no insurance.... F@#K!!"

...Yes, hundreds of thousands invested into the health care system and we were left facing a crisis with nothing!

As soon as the paramedic saw me, he uttered the dreaded words, "Kidney stones." Being the overachiever that I am, my body tried to rid 3 stones at once with a 6 millimeter one heading the way causing a blockage in my ureter. The CAT scan uncovered that I had another 5 stones in the kidney ranging from 2-8 millimeters.

Two days later I was in surgery, but not after we had to fork up a $5oo deposit to secure our slot on the schedule, "This is the generous self-pay option we offer." Generous for who? Certainly the Hippocratic Oath did not mean much in the private sector. (Did you know that most medical schools do not even require this oath?) Not seeing any other option we paid the money to have the urologist put in a stent to push the stone back into the kidney and to open the kidney and bladder to allow the urine to flow without obstruction.

Several days later the Kidney Stone Center called to pre-register me for Ultrasonic Lithotripsy; the use of high frequency sound waves to pulverize the stones. Of course we had to tell them we didn't have insurance. The pause on the phone followed by the statement, "Oh, you're a self pay... you need to talk with Verina," created a cringe in me. Why was I so embarrassed??? It wasn't like we eagerly volunteered to have my husband downsized in the middle of a suppression nor did we sign up for me to stay home because of the elephant in America's front room called Autism.

The financial advisor reassured me we didn't need the whole $7170 up front.... but, that isn't what was bothering me. It was the thought of accuring another debt and feeling responsible for this financial burden my family was facing. I felt so incredibly guilty... didn't I take care of myself good enough? I had this incredible sense of blame about these darn stones in my kidney...

I still have 2 days to go until the lithotripsy and will have to keep the stent in for an undetermined amount of time to prevent obstruction. Honestly, the various medications that I have been on frighten me more than any of the procedures. Having had a clean system for 15 years, I am sure my body is freaking out about the differing chemicals surging through me. So, I guess I will be doing that liver and/or body cleanse I have been putting off sooner than later.

Of course, I have researched kidney stones, natural cures and the like. The obvious finding is that I should be drinking, yet, even more water than I do. Mineralized water should be drank moderately as it contains calcium. Cranberry juice is another fluid that will help clean out the kidneys.

Some of the recommendations are steps we have already taken to improve our health; reduce sugar, soda, caffeine, alcohol, and refined foods. It is also recommended that you avoid animal byproducts, dairy, cheese and oxalate containing foods (beets, spinach, nuts, black tea, chocolate, beans, and strawberries). Oxlalate foods will be hard for me to eliminate as I love all of the items on the list!

Alternative health options always improve the function of the body, which might be why my body decided to attempt to excrete these stones in the first place. Accupuncture, chiropractic, reflexology, massage, reiki and meditation are all modalities that have reported beneficial health benefits.

For now, I have reduced the meds down to the smallest amount I can tolerate and still have the pain manageable, the children are pretty calm considering they are completely out of their routine and my husband is still holding strong even though I am sure he is on the brink of exhaustion. However, I presume this, too, will pass (no pun intended).

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Searching for Biological Autism Answers: Dead End!

Even after the neurologist maintained that a chromosomal deletion was insignificant, he recommended we talk to the genetic department to get more information on the findings. We waited months with sleepless nights to get in to see him, finally we were there.

The intake personnel asked why we thought we were there to see the geneticist, "Our daughter is diagnosed with autism and the blood work showed a chromosomal deletion, dad has the same deletion, mom has a different one, and the neurologist thought we could learn more about this from the geneticist."

Without hesitation he replied, "You will learn that these deletions are insignificant and not related to the autism. And, although, we know that autism is a biological disorder not an environmental one, we do not see any evidence of genetic causation in your daughter’s case."
My mind started mulling over these words…

‘Biological disorder’….
‘Not environmental’….
‘Do not see any evidence’…

He proceeded to take a thorough 60 minute case history. As we discussed our family history, I started to relax; somehow having the medical model finally listen to our story seemed to be relief in and of itself. But then, we had to wait another 45 minutes before the geneticist came in to see us. At some point I said to my husband, "If there is no evidence of biological component here… why are they wasting our time?"

Both kids were restless, hungry, and ready to bolt as the door opened. "Hi, Mr. and Mrs. Richardson…. I am ‘Dr. Geneticist’…. why do you think you’re here today?" Again, I explained what I knew of the deletion and his reply shocked me, "Over 80% of the time I can look at a child’s profile and determine the cause of the autism. We don’t see any of those indications with your daughter’s case; however, even though we know that autism is biological, we haven’t been able to know precisely where it is coming from. We are doing continued research to determine how it is biological and which specific gene it resides on."

WHAT?!? How can the geneticist say that there is autism is 80% biological/genetic but not have scientific evidence where the ‘autism code’ resides?

I craved validation, "If you are not finding any biological component linked to my child’s condition, is it safe to say that her condition is related to environmental toxins?"

Prepare yourself for what we heard!

"Some individuals are blaming environmental factors. I have not seen enough evidence that indicates that this could be valid…. There is no link between autism and environmental toxins." He continued to discredit the alternative venues of treating autism like chelating, GFCF diets, and other DAN! Doctor protocols. He even went as far as to state, "Chelation is killing kids while the people recommending it are making gobs of money."

I couldn’t believe my ears, but then again, his science and research is funded through this paradigm (psst…. Guess who’s making gobs of money too?). But to outright attack it befuddled me. I admit I question medical efficacy, but I also invite debate so that we might learn more about both approaches. It is when they find unison that maybe, just maybe, we will begin to progress towards finding a cause and more importantly find a cure.

Many are making ‘gobs’ of money off our children’s deficits from both paradigms. But, right now, my reality is spent in the sleepless nights wondering how we are going to pay for the co-pays, huge deductible, and the portion of the bills that the insurance company hasn’t deemed medically necessary.

The thousands of dollars in bills that we have accrued in the past four months is money that could have been utilized in a much more productive manner. The inconclusive tests results, countless appointments where the physician told us we are already doing everything they’d recommend and the referrals to additional hospital/medical services have racked up a bill and wasted valuable time that could have been utilized towards the recovery of my daughter’s autism.

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A Letter to President Obama:Autism Advocate Requests Your Attention

Dear Mr. President,

I can’t post-pone this letter any longer. There is a pestilence occurring among our children in America and we need your help!

My daughter was diagnosed with Autism Spectrum Disorder (ASD) last Halloween. Progress is slow, but steady. We do feel restricted in the process of addressing her needs due to the law not requiring the inclusion of autism on insurance policies, the narrow-mindedness of some deemed professionals in the industry, and the lack of financial backing.

Mr. President, many parents and professionals have differing opinions about how to address the needs of these children and what causes ASD. I am sure you are aware that this is a hot topic and tempers flare. I am not going to address the causation in this letter, but am going to acknowledge that I quietly (and often) wonder if the two injections of the RhoGam inoculations mandated on me during pregnancy caused our daughter’s disability.

I am going to also point out that since implementing the medical model during the past few months our medical bills have surpassed our personal budget. Unfortunately, I think that Autism has become an industry rather than an epidemic. It infuriates me that many are getting rich off of the woes of our children. But, this isn’t about me and the need to find someone to blame. I have made peace with our circumstance, and thank God that he entrusted me with this challenge. (He must have recognized something amazing within our family construct to bless this family with such an amazing journey.)

There are others I am most certain that have been called to action by a higher order as well. For instance, Angela Warner—a military mom of four (2 with ASD), is an inspiration to each of us on this journey. Her drive to alert you, Mr. President, and the mother of your children, Mrs. Obama, about this epidemic and how it is affecting our military families is inspirational.

Men and women who have committed their lives to protecting ours, are fighting an even bigger battle and dealing with even greater grievances on their home fronts as well. I am not going to pretend to understand what is like to be a military family and face autism, this you can learn by accepting her invitation to meet in early October. Until then, you can read more about her bravery and endeavors at http://www.autismsalutes.com/.

Age of Autism, a daily web newspaper of the autism epidemic, recognizes Angela as an Air Force spouse, mother, and advocate for our children. Today, I am asking that you encourage Michelle Obama to meet with Angela to have a discussion about what American families are going through.

It won’t be long before the 1 out of 150 kids with ASD become of age… that will bring its own set of challenges. If we don’t act now, more money and resources will be required to meet the activities of daily living for this fast growing population. I encourage you to help the children of today for a better future tomorrow. I, personally, have signed an open letter to you on the web encouraging you to look into the environmental factors that could be contributing to this debilitating disorder.

Thank you for your action!
Susan Richardson
Mother, Wife & Autism Advocate

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The Ultimate Gift For Dad

We went to Grandma’s house for a week… the children had a blast splashing in the pool, playing with Grandma, visiting the Zoo, and even going on an African Safari complete with hand feeding buffalo, giraffe, monkeys, camels, and more.

But, truth be known, it was Daddy’s Father’s Day present; a whole week to himself to do whatever he pleased… What filled his spare time didn’t concern me; I trusted him explicitly to appropriately utilize this heartfelt gift to whatever he deemed necessary to fill his spirit.

What did matter… was that he was able to step away from the daily responsibilities of juggling a family, a demanding career, and the many struggles a man faces when his child experiences autism.

He didn’t have to listen to, "When are you coming home?" a thousand times because I was so exhausted from the demands of the day and needed relief. When those 4:45 calls start… he knows he will have to jump out of the role of professional right into the role of daddy just so I could go lay on the bathroom floor for 10 brief minutes to recharge my own batteries.

He didn’t have to attend to my technical incompetence after he just spent a day at the office listening to a bunch of whining adults about their technical woes. I am sure all week he had a sense of relief when he came in through the door knowing he wasn’t going to have to trouble shoot why my outlook address book wasn’t syncing with my mailbox or why I couldn’t print the Webkinz adoption certificates.

We were tempted to get him a shirt instead that stated, "No I won’t fix your computer!" … somehow a week off seemed more appealing to his nature.

I am sure he indulged in a few cigars and drank a High Ball (whiskey and 7-up) while listening to nothing... quietness, I am sure, enveloped him. Certainly, this was a foreign sound from the ten years of child driven noises and 21 years with a woman who loves to talk. I am sure he basked in this delight!

(Yes, I suppose I am a bit jealous… but, I’ll get over it.)

I am just as certain that it was not all pleasure. I know my husband and know that in the recess of his mind he still worried about whether or not the therapy and doctor bills were paid… Whether or not our child was getting enough nutrition and the appropriate services… Whether or not he would ever be able to hold a meaningful conversation with his daughter… Whether or not the girls would be provided for if we were to die... Maybe, he even contemplated whether or not it would be easier on him if he left us (like in 85% of marriages that are faced with autism).

But, I am comforted that by Sunday morning he emailed me saying, "I miss my 3 women! When did you say you were coming home?"

I learned that by the time Sunday night arrived he desperately missed us. I suppose I am reassured that he found himself yearning to rummage around for Red Bear so Emily could sleep and that he missed the nonstop chatter of Sahara having to recite an entire scene from Shark Tales before she could nestle down for the night. I am glad that the house at times was too quiet for him.

I have come to terms that there are moments that seem so hard and painful in the world of autism that it seems easier to run away … but that is why each of us need this type of break now and then, to not only recharge our batteries, but to shatter this illusion and acknowledge that the grass is perfect on this side of the spectrum.

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Ohio Votes For Autism Inclusion: Coverage for ASD!

I was running errands yesterday afternoon listening to talk radio… something I like to do when the kids aren’t in the car with me. It tends to help me understand both sides of political agendas, so I can draw conclusions that are not based purely on political affiliation but on substance; and this day was no different.

So as I neared the post office, I was listening to one man’s opinion, and a strong one at that, about how wrong Obama is with his Health Care Reform stance. He was making good arguments, but the chatter in my head pleaded for someone to recognize that regardless of what we did about Health Care Reform, we had to do something. What we are doing isn’t working, am I not the only one who sees this?

I had fuel added to my fire about the insurance game when my daughter, whom is diagnosed with Autism Spectrum Disorder, had a claim denied when she was 3 years old. She wasn’t speaking at all at the time and her medical doctor kept saying, “Well, some kids just don’t talk until they are 6.” But, I kept pleading something is wrong. She won’t even look at me when I call her name, she doesn’t budge when we make loud noises behind her, something is wrong with my baby… please do something, help her!

After a lot of persistence, we got doctor orders to rule out hearing loss as the first step. I was relieved and anxious that we would finally see if this was the culprit for her unresponsiveness and lack of speech. The tests came back negative and she was labeled with the diagnosis of “Speech Delay”. Whew, we were relieved that it wasn’t hearing loss, but...

The insurance company said they would not pay for the tests based on the diagnosis. I tried to calmly explain that we thought she was deaf and we were trying to rule that out… I think that was the first time I truly experienced rage. Here I had this non-verbal 3 year old who was non-responsive to noise, and I was being told it was not medically necessary to check her hearing. The insurance rep even told me that if she had had speech previously and lost it, they would have paid for the testing. See, insurance companies will pay for rehabilitative services, but not habilitative services.

This was insane! I just wanted to help my child, and even though I paid my high premiums each and every month, they weren’t going to help my little girl. Didn’t they understand that the quicker she got help, the less it would cost down the road?

But, yesterday during a commercial break, I started to whoop and holler. I am sure the old woman in the car next to me thought I belonged to the Looney Bin, but I couldn’t contain myself. I was animated, excited, and wanted to express myself.


“I just don’t understand how they get away with it. Why does the law let health insurance companies discriminate against children with autism?”


I couldn’t believe my ears… OH MY GOOD GOD had listened to my pleas!!


“Families are going broke paying for medical services their children desperately need.Cancer is covered. Diabetes is covered. But not autism – even though autism has become more common than most childhood ailments combined.”


Disbelief, Adrenaline, Hope burst through my essence… Something I have personally ranting on about for the past three years was on conservative radio for everyone to hear. This was a monumental moment and I was praising God as I heard the words sponsored by Autism Speaks encouraging Ohioans to call Ohio House Speaker Armond Budish to advocate for our children.


“Speaker of the House Armond Budish has led the effort to end the terrible discrimination against people with autism. The Speaker hopes to leave a legacy of care for all of those who suffer with autism.”


Our children ARE discriminated against, and it is about time the world knew about it!!


“Please call Speaker Budish today and express your support as he defends his autism insurance reform provision in the budget negotiations with the Senate. Call Speaker Budish at (800) 282-0253… that’s (800) 282-0253.”


I called my husband before the commercial was over; he thought we had won the lotto by the way I greeted him. You know, I would take this bill passing over the lotto any day. Money is controlled by those with political power, but my daughter getting the care she needs, the care she deserves has far more value.

Sometimes, I feel disbelief that this is even a topic of negotiation; 1 out of 150 children experience ASD and we have to negotiate whether or not the treatments that run in the tens of thousands, the tests that have comparable price tags, are in the state budget?

“Now is the critical moment for the people of Ohio to speak up in support of individuals with autism and their families,” said Elizabeth Emken, Autism Speaks Vice President of Government Relations. “We urge all Ohioans to call Speaker Budish, a true champion for the autism community, and voice their support for his effort to end insurers’ blatant discrimination against children with autism. Ohio is closer than ever before to joining the growing number of states that have passed legislation serving to right this terrible wrong.”

Don’t hesitate call Speaker Budish today (800) 282-0253!!

Summary of Ohio Autism Insurance Reform Bill:

House Bill 8 - Sponsored by Representative Ted Celeste (D-24) and Representative Nancy Garland (D-20).

Requires private health insurance companies to provide coverage for the diagnosis and treatment of autism spectrum disorder.

Coverage of treatments will be provided when prescribed, provided, or ordered for an individual diagnosed with autism by a licensed physician or a licensed psychologist who determines the care to be medically necessary.

The bill includes coverage of the following treatments: Diagnosis, Habilitative or rehabilitative care, Pharmacy care, Psychiatric care, Psychological care, Therapeutic care, counseling services, and Applied Behavior Analysis (ABA).

The bill defines "medically necessary" as a services that is based upon evidence; is prescribed, provided, or ordered by a health care professional licensed or certified under Ohio law to prescribe, provide or order autism-related services in accordance with accepted standards of practice; and will or is reasonably expected to do any of the following: prevent the onset of an illness, condition, injury, or disability; reduce or ameliorate the physical, mental, or developmental effects of an illness, condition, injury, or disability; or assist to achieve or maintain maximum functional capacity in performing daily activities, taking into account both the functional capacity of the individual and the functional capacities that are appropriate for individuals of the same age.

The bill applies only to fully-funded individual and group health plans and multi employer welfare arrangements governed by state law.

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