Monday, August 18, 2014

Where is the faith community in the Ferguson response? (WWJD)

I'm actually not sure what (if anything) the faith community in my city and the faith community as a whole (outside of Missouri) is saying/doing COLLECTIVELY around Ferguson.  Or Eric Garner. Or any of it.

I know that I've seen people of all races at local rallies (including some individual church groups), and I know locally (and nationally) there have been some clergy who've spoken out (though the majority of the ones I've seen were AA).

I don't really follow the "big" evangelical national leaders, but I haven't heard anything from them.

My church is pretty racially mixed, and though the persecution of the Yahidis and Iraqi Christians was discussed this weekend, I didn't hear of anything about Ferguson.  Now, I did miss the Sunday immediately following the incident, so perhaps it was mentioned. I don't know.

Or maybe it's being addressed in individual Bible fellowship groups and/or our missions/outreach division at our church.  I don't know for certain, but I hope so. I really, really, hope so.  I love my church and would hope that we'd take action in some way.

However, it would great if the faith community (as a whole, not exclusive to white believers) could at least make a blanket statement about the need for peace to be restored to the area and the importance of lawful and respectful civilian-police interactions.


I'm not saying they necessarily have to speak definitively about the specifics of Mike Brown's death, but they could at least acknowledge publicly the importance of praying over the unrest that is occurring (and it would be even better if they'd stress the importance of people trying to actively engage in discourse and activities that can help).

During the 1950's and 1960's, the faith community - and specifically, the Christian church, was one of the leading supporters of the civil rights movement!  In the 1980's, churches openly denounced apartheid.  Even today, faith-based nonprofits, churches, parishes, mosques, synagogues etc are serving humanity on a global scale - from homelessness to refugees to child welfare.  Human rights should be a driving principle of any faith-based institution!  Furthermore, churches are often front and center when the issue at hand is one of their "hot button" topics.  Gay rights.  Abortion.  School vouchers. (In Houston, the Equal Rights Ordinance.) Is there nothing to say about this situation?  Nothing at all?

Really?

I don't understand the silence now; this is essentially a "modern day Selma," as others have said.

Even a neutral plea for prayers and peace would mean a lot right now; they don't have to choose a "side" except the side of peace.

After all, what would Jesus do?

Tuesday, August 12, 2014

And the truth shall set you free (if you choose to be free)

There are many people who truly believe that Autism Speaks is a benevolent organization that is working on behalf of people on autism spectrum and their loved ones. They might have received Autism Speaks' "100 Day Kit" from their physician upon diagnosis, or maybe they came across Autism Speaks' website while searching about autism online.

Or perhaps they saw a magazine ad, billboard, or a well-meaning friend told them about an Autism Speaks annual walk or other event. Autism Speaks is everywhere, so there are any number of ways that they could have learned about them.

Over time, some of these individuals learn the truth about Autism Speaks - that there is nothing benevolent about them.  Since its inception, Autism Speaks has blatantly refused to meaningfully include the very population is purports to serve in its decision-making or leadership and have in fact repeatedly thwarted the efforts of those attempting to reform them from within.  They promote a very dehumanizing view of autism and despite the huge amount of money they raise annually, they spend very little of their money on family services (only 4% of their annual budget)

These facts have influenced many people to withdraw their support of Autism Speaks, choosing to instead support organizations that are committed to positive change and acceptance.  Awareness that Autism Speaks is not what is appears to be is growing.  This is due in part to the numerous  organizations, Autistic advocates and parent advocates whom are working diligently to inform the public about how damaging and destructive Autism Speaks is; they have been instrumental in helping families to discover the truth and have also engaged in activism surrounding this issue.  However, although there are a number of people who are grateful to learn the truth and subsequently denounce Autism Speaks, there are also hoards of people who reject the truth.  Some deny the easily verifiable facts and choose to believe a lie despite the evidence. These people are in (deliberate) denial.

But there are others who acknowledge that there are the problems with Autism Speaks, but state that they still choose to remain affiliated with them anyway.  Often they cite the widespread "awareness" campaigns, but they also might mention how Autism Speaks has "helped my child to get in-home ABA."

They maintain that despite all of Autism Speaks' flaws, because they have benefitted in some way from being associated with them, they will disregard Autism Speaks' egregious antics. Basically, they are saying, "I know they're really bad, but since they've helped ME and MY family, I'm still going to support Autism Speaks."

And to that, I say this:

That is your choice, but I believe that it's a terrible one.

There are warlords and dictators who terrorize millions and destroy entire societies. But they are extremely generous to those in their elite inner circles; providing them with financial security, privileges, and other "in-group" perks. Do those singular acts of kindness compensate for all of the bad that they have done? Absolutely not.

As a teen, my father, who grew up under colonial rule in Africa and earned extremely high grades in school, turned down a full college scholarship offered to him by his oppressors because he would not be bought. He instead worked his butt off to get to America and put himself through college with his integrity intact.

If you can sleep at night knowing all of these things about Autism Speaks and still choosing to support them despite the many problems for your own selfish reasons, then I feel very, very sorry for you.

I am far from wealthy, but I wouldn't take a freaking dime of Autism Speaks' tainted blood money for any services my children need. Ever. I can look my autistic children in the eyes and know that I didn't sell them out to a company that is trying to ensure that people like them, and like me, were never born.

I don't judge the people who support Autism Speaks simply because they don't know any better.  They aren't aware of what Autism Speaks is really about and they cannot be faulted for their ignorance (I was once equally ignorant). That is different than having accurate information and making an informed choice to do the wrong thing.

But to knowingly, willingly align oneself with an entity that is orchestrating the potential destruction of an entire group of people simply because that organization shelled out a few dollars for some therapy? Heck to the no.

My dignity as a person, a parent, and as an autistic woman and that of my family has a much higher price tag than that.

Yours should be too.



Photo credit: alacat-acosta

Saturday, August 9, 2014

Thank you, Build-A-Bear workshop!!!!!

Build-A-Bear Workshop, I want to thank you for ending your corporate sponsorship of Autism Speaks.  As an autistic adult and a parent of two beautiful autistic children, I am very touched by this measure. It's hard to go against the grain - but you did. It says so much about your company. 

It grieved me deeply to boycott your company, Build-A-Bear holds a special place in my heart because it is the place where my oldest daughter requested to go on her first "Gotcha Day" (her adoption anniversary).  We still have the bear that we made that day; the bear's name is Brittany and as we've had her over 6 years she's one of my daughter's oldest bears.

It hurt to think that our family may never be able to visit Build-A-Bear again once I learned of your affiliation with Autism Speaks. I am very happy to be able to resume shopping at Build-A-Bear, and in fact plan to go there tomorrow afternoon to purchase bears for all 5 of my children. I think I will also host my 5 year old's birthday party next month at Build-A-Bear. Your parties are always amazing, and what better way to show my appreciation and that of my community than using my dollars to support a company that has opted to support people like me? :)

Thursday, August 7, 2014

Face the truth: what you REALLY mean when you say "low-functioning"

I'm so freaking tired of people throwing around functioning labels. "High" functioning autism. "Low" functioning autism. "Moderately," "mildly," or "severely" affected by autism.

Aside from the fact that these labels are arbitrary, divisive, imprecise, and inaccurate, they just don't make sense.  As someone (not me) brilliantly stated, "Low functioning means that your strengths are ignored; high functioning means that your deficits are ignored."

There are several GREAT blog posts about functioning levels written by adult Autistics and by parent allies that discuss functioning labels far more eloquently than I, and I encourage you to read them. This post is merely my small contribution on the subject.

And it's going to get real up in here. Let's stop already with the deceptive semantics and just deal with the truth: there IS no "low," "moderate," or "high" functioning autism. There just isn't.  Just as there is no Tooth Fairy.  Just as parents placing money under their children's pillows doesn't magically make those parents transform into the Tooth Fairy, millions of parents and professionals using functioning labels doesn't make those labels legitimate nor accurate.

Technically, there is not and never has been an actual diagnosis called
"low-functioning autism" or "high-functioning autism."  There is and has never been an ICD code for either of those or for anything like them.

Previously, under the DSM-IV TR, there was an ICD-9 for five Pervasive Developmental Disorders: Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder, and Rhett's Disorder.

Three of these once separate diagnoses have been merged since 2013 under the DSM 5, so there is now an ICD-10 code for a singular diagnosis, Autism Spectrum Disorder.  Again, there is not and has never been anything other than these autism categories. Period.

"But my doctor said Timmy had low-functioning autism!" you cry.  Yes, your doctor very well might have said that. That term, and similar ones have been tossed around for many years, but they're not an actual diagnosis.  They are colloquial terms that doctors, parents, and other professionals use for descriptive purposes similar to how some people in the African American community might be described by their complexion.

Just as the use of functioning levels is just as variable and inaccurate as that is; what's considered "light" or "dark" to one person is not necessarily the same way another person would characterize it.  And just as there's no actual race called "high yellow" or "dark-skinned," there's no "low-functioning" or "high-functioning" autism.

In discussions about treatment, about services, and about "cure," the false dichotomy between the "levels" of autism is ever-present.

The "high-functioning" people are supposedly "draining resources" needed for others - that's IF they're even accepted as truly being autistic and not just "quirky." (Because of course they're "too high-functioning" to understand "what it's REALLY like" to be on the spectrum.

And the "low-functioning" people are "suffering" and their families are supposedly "desperate" for "any" treatment that will help - be it compliance training, questionable biomed, or even the ever-elusive "cure" of the month being peddled by autism's many snake-oil salesmen.

NO, I don't think everyone on the spectrum is the same.  YES, people present differently. That's why it's considered a "spectrum."  There is a phrase that some people use pretty frequently that describes this well: "If you've met one person with autism...you've met one person with autism."  Although in recent years that phrase has unfortunately been used unkindly by some autism parents as a dismissive tactic to silence adult Autistics who are "not like my child," I think the phrase's original intent before it was twisted by others was to acknowledge the heterogeneity of the autism spectrum.

At any rate, if people are honest with themselves, all "low-functioning" really means is someone who is both autistic AND has a lower score on IQ and/or adaptive living skills assessments.  (Additionally, to some it likely also means an autistic person who is primarily nonspeaking.) In other words, "low-functioning" is the presence of an autism diagnosis and intellectual disability (and again, to some, also the characteristic of being a nonspeaking individual).  These are the ONLY differences between those who are "low-functioning" and those who are high-functioning." Nothing else.

This particular post was prompted by something I read this morning in a group.  For the umpteenth time, someone said that we "shouldn't judge" someone who wants a cure for their "low-functioning" child who was "suffering."

Don't get me wrong. I KNOW that co-occurring conditions such as epilepsy, depression, etc can exist. I am an autistic adult and I have co-occurring conditions.  So do my autistic kids. I begrudge NO ONE the right to address problematic symptoms of any type with the appropriate treatment. I am not anti- treatment; like most neurodiversity proponents, I think ethical, helpful treatments are of tremendous importance.  That's not the issue.

The issue is that the parents need to be honest with themselves and with everyone else; it is not the "autism" part that they want a "cure" for.   What they want a cure for is how autism presents when there is also low IQ/intellectual disability.  And again, since the so-called "high-functioning" autistics are supposedly "just quirky" and "not really disabled," then the problem must be with the intellectual disability.  So...what they really want is NOT to have a child who has an intellectual disability.

But no one will EVER say that explicitly because it's not "politically correct" to say that they want a "cure" for intellectual disability. It would be considered discriminatory and disrespectful (as it should).   So even though that is what is MEANT, that is not what is actually said.

Unfortunately, no such "political correctness" exists for autism. With regard to autism, expressing a desire for a cure IS socially acceptable as well as common.  It is not at all unusual to hear autism parents, autism professionals, and even well-known "charitable" autism organizations frequently and openly lamenting about how difficult "dealing with autism" is; how much autism "costs; "how much those on the spectrum are "suffering" and how their families are as well; and how finding the cause and a cure is needed.

Then to illustrate the point, EVERY single symptom, characteristic, and/or behavior a person has then gets lumped under the category of "autism" even when few of the challenges the parents are concerned most about fall under the diagnostic criteria at all.

According to the DSM 5, autism (Autism Spectrum Disorder) is characterized by:

"Persistent deficits in social communication and social interaction across multiple contexts..." and
"Restricted, repetitive patterns of behavior, interests, or activities, currently or by history..."

That is IT.  Period.

It's not epilepsy.  It's not gastro-intestinal distress.  It's not allergies, or anything else.  Though it can exist alongside those things.

And it can (but does not necessarily have to) exist along with intellectual disability.

With regard to intellectual disability, there are many people with it who have careers, spouses, and families.  They have hobbies, interests, goals, talents and friendships.  They add to the diversity of our shared humanity.

They may also have challenges.  Some of these might be as a result of everyday life, some might be due to societal discrimination and stigma, and some might be due to their condition.  Challenges are not unique to the autism spectrum.

Many of the areas of concern that people have about challenges their autistic loved ones face can also be found in other groups, such as those with intellectual disability.  Some people with intellectual disability might "wander."  They might hit themselves and others. They might have communication difficulties and therefore unable to express pain or discomfort with speech (though they are likely expressing it in other means that others around them may be missing). They might have co-occurring health ailments. They might stim and rock frequently, or hum. They might be non-speaking.

And you know what? They should still exist. They are still human.  They still have value.  Period.

One of my children (who is non-autistic) has intellectual disability.

He should exist.
He is human.
He has value.  TONS of it, actually.  He is amazing. 

I know *exactly* what you are talking about when you begrudge the existence of individuals who are "low-functioning" and that you want to "learn the causes" so you can "prevent" people from being born who are going to be "like that."

"Like that." "That" meaning intellectually disabled.  Like millions of people around the world. 

Like my son.

You SAY it's "the autism."

But then you go on to describe something very much unlike autism, but very much like my child and other people who share his diagnosis of intellectual disability. The people you describe almost as if they are less than human because they are different than you.

And that?

That I have a huge, huge freaking problem with.

Stop basing the value of people's lives on minuscule things such as whether or not they speak, how "social" you think they are, their perceived intellect, or other characteristics.

Start looking at what REALLY matters about a person. Their heart. Their character.  Who they truly are in totality. Focus on their strengths. Offer support. Offer love. Build them up.

For God's sake.  For your own sakes. For the sake of the youth, who are our future.


Please.

Saturday, August 2, 2014

The deadly disease I'd never heard of

I’d never heard of Kawasaki Disease in my life before my son had it, but thanks to the American Heart Association, CDC, Mayo Clinic, and other sources (whose information is summarized below in addition to my personal narrative), I came to learn a lot about this condition while frantically researching from my cell phone in the doctor’s office, ER, and my son’s hospital room.

Kawasaki Disease (also known as “mucocutaneous lymph node syndrome”) is an acute systemic vasculitis (inflammation of the blood vessels) that occurs in childhood and is the leading acquired cause of pediatric heart disease.  Kawasaki affects approximately 4500 American children annually, usually in the winter or spring.  Kawasaki symptms develop over the course of 1-2 weeks, and the entire onset of the illness typically lasts 6-8 weeks, though for some unlucky children the effects last for a lifetime. 

Although anyone can contract Kawasaki, children of Japanese heritage are most susceptible of Kawasaki (more than three-fold more likely even than other children with other Asian heritage and significantly more frequently than children of other races).  It occurs most often in young children (under five years old), particularly boys; the average age of diagnosis is age two.  Fortunately, it is often self-limiting (meaning that it will progress and then resolve on its own over time without treatment); however, its symptomology still creates problems – resulting in aneurysms in 15-25% of children and risk of sudden death especially if not properly diagnosed and treated within its first 10 days.

Visible Kawasaki Disease symptoms (of which my son had every single one) include very high fevers (in my son’s case, sudden fever over 105 degrees Fahrenheit for nearly TEN days in a row NOT significantly lessened nor controlled by medication); excessively cracked, garishly bright red bleeding lips and bright red swollen tongue such as one might see in scarlet fever; two reddened eyes like in pinkeye but without the drainage; peeling and cracked skin of the fingers, palms, toes, soles of feet, and genital region (and I mean peeling and sloughing off skin like a snake sheds its skin, not just typical dryness); dark lines appearing on the finger and toenails, followed by the nails thickening, clubbing, and splitting; spotting, discoloration, and rash on the body; huge, swollen lymph nodes, etc. 

The unseen toll of Kawasaki, however, is far more concerning that what is visible to the naked eye.  The inflammation of coronary vessels result in several tell-tale cardiac findings, of which my son had four.  Several echocardiograms are given (initially and at various to assess the extent of heart damage and to determine if more aggressive treatment and/or surgical intervention might be warranted.  Kawasaki often causes severe joint pain (as it did to my son) and in some cases arthritis.  There are also changes detected in the blood.  My son’s lab testing revealed abnormalities; specifically an extremely elevated leukocyte (white blood cell) count, anemia, high thrombocyte (platelet) count and low bilirubin.  His tests also showed something called a high erthryocyte (red blood cell) sedimentation rate and a high C-reactive protein (a protein released by the liver) rate, which meant that his red blood cells were breaking down faster than they should and the protein was being released in larger and faster quantities than it should, signaling an infection. 

Kawasaki can often be successfully treated within the first ten days of onset by 1-2 bouts of immunoglobulin (given through an IV over several hours, 12 hours if I recall correctly for my son) and then daily low-dose aspirin to prevent further heart damage.  If caught in this optimal window of time, the chances of the disease progressing to long-term damage drops to under 4%!  And the treatment is often so successfully that though the symptoms don’t disappear overnight, they often begin to rapidly improve in an astonishing amount of time with noticeable changes within as little as one day. 


However, misdiagnosis of Kawasaki is common, which can delay the start of treatment and increase the risk of heart problems and death.  It can sometimes be difficult to determine whether a child is presenting with Kawasaki or with some other illness; however, there is a protocol that physicians should but often don’t utilize to rule out other symptoms.  My son was repeatedly misdiagnosed (due largely, unfortunately, I suspect, to race – but that’s another sad story), and thus did NOT get treatment as early as he should have; he could have been treated within the first few days as I made repeated trips to the doctor, urgent care, and ER in the initial days of his high fever.  He was even hospitalized for some days due to the fever yet still not properly diagnosed at the time despite telltale labs and other symptoms.  But thank God, our pediatrician insisted upon his discharge from the first hospital that we immediately take him to the ER of another.  He was assessed, admitted, properly diagnosed, finally, and treated. He survived.  

On the day he left the hospital, I sent the following message to the many loved ones who’d kept him in their thoughts and prayers throughout the ordeal: “To God be all the glory.  Lukas successfully completed his IVIG treatment and his most recent echocardiogram does not indicate heart failure.  Though he will still have to take aspirin as prophylaxis against future heart problems and will have numerous follow-ups with cardiology and infectious disease, he has recovered tremendously – enough to be discharged from the hospital this evening.  I’m writing this testimony to you sitting on my living room couch!  Thank you all for your prayers and your support; it meant a lot to us. J