Monday, November 18, 2013

This is Autism Flashblog

My son is amazing.

No really.  He is.  He is smart.  He is popular.  He is funny.  He is kind.  He is honest.  He is compassionate.

When we found out we were expecting, I had made very specific family goals according to our family values--no matter what kind of child that we had, we felt it very important that he or she be compassionate, responsible, and open-minded.  When they first told us autism, we were told our son would never love, would lack empathy, would have a low chance at independence.  They said he would probably never have real friends and would be very bullied.

That, obviously, hurt.

As does the same pervasive mythology that was recently utilized by the largest advocacy organization for people with an ASD.

Myths that create great damage to the breadth and span of the Autism Spectrum.

But we connected with other people who proved otherwise than what we had heard.  We connected with others who networked with others who could share with others their tools for successfully taking this journey.  Others who are on the spectrum or "get" the spectrum.

My son amazes me every single day.  My son, like his mother, is extremely empathetic to the feelings of the people around him.  He may not always know how to respond to a situation, but he hurts when others hurt.  He gets upset when others are angry.

He also stands up for himself.  He doesn't like to be hit and he doesn't like "mean" and he doesn't like greedy and he "gets" the core values of friendship.  While he may not always understand the intricate rules of the games his peers play, he KNOWS who is a good friend and what reasons that he considers a friend worthy or not.

He shares everything.

He loves to laugh and make others laugh.  He is quite the clown.  He is a good mix of my very goofy self-deprecation and his father's dry, sardonic wit.  He will moon you and laugh then trip himself while trying to pull up trou and laugh harder. After having a deep conversation resulting from his burning need to understand why people can sometimes go hungry ("Tell me again that story, Mom.  Tell me why some kids are hungry like that [regarding a commercial on t.v."]) . He is a heck of a being.

He also asks about his world-at-large.  Its not just his world.  He cares about the bigger picture.  "Mom, why are there bad people?  Why do we need soldiers?  Why do people make bad decisons?"

And while he is still just a five year old doing as a five year old will do, he's also a very strong human being.  In my home, you would not be amiss to hear "be nice!"  "You shouldn't hit; someone could get hurt."  "Don't tease!  It isn't nice!"  "Is your seatbelt on?"  "Do you have your glasses and your phone mom?  Okay, now we are ready to go."  "Would you like a bite?"  "I can't wait to share this with Dad/Mom/BFF."  "Don't yell.  It hurts people's feelings."  "I need a hug."  "Do you need a hug?"  "Are you okay?  Do you need me to kiss it and make it feel better?"  "I need to put my shoes in the ottoman so the dogs don't eat them."  "Would you like to share my blanket?"

When asked for a previous post how he felt about autism, this was his response:  

Me:  You know you have autism, right?  How does that make you feel?
E:  I have a rainbow brain and it gets healthy when I eat fish and it thinks about superheroes and monster trucks and goes *bow pow bow* [using hand gestures to intimate that it "kicks butt"].
Me:  Do you think you are good or bad?
E:  I am a good boy.  I make good decisions.  And so does Lupe [his favorite stuffed lobster].
Me:  Autism can make some things hard.  Does it make things hard for you?
E:  I don't (meaning can't) have casein and casein is in ice cream.  But sometimes I eat yogurt.  Aunt J doesn't eat ice cream because it has lactose but she don't like yogurt.  And S [his cousin] doesn't eat chocolate because it gives her belly-aches.  And Mawmaw can't eat too much seafood, either. [makes a silly garbled full body gesture at being sick and then giggles]
Me:  So you wish you could eat ice cream?
E:  [wiggles brows to nod yes]  I can eat ice cream with P [a classmate] and he would say "thank you for sharing!" I'm a good friend!  I am smart!  And Lupe thinks I am really nice when I share with T and H [his classmates].
Me:  What do you want to be when you grow up?
E:  A soldier on a boat [a nod to my Father-in-law who is former Navy] and a chef.  And I want to work at N[local technological center] with Daddy making the internet safe!
Me:  Good job, buddy.  You always rock.
E:  [wiggles brows to nod yes and flicks his pointer at me] your Mom rocks.

He stands up for his needs at school.  He reminds the cafeteria staff that he can't have certain foods.  He doesn't just quietly go to his seat and go hungry because he's afraid to raise a fuss.  He has self-worth.  

Nary a soul in this world can say to me that my son's life and being are lacking:  he is not lacking in heart, not lacking in humor, not lacking in insight, not lacking in caring about others, not lacking in laughter, love, nor a very, very bright future.

Our autism is:

Kindness, warmth, big heart, determination, intelligence, compassion, caring, protecting, sharing, loving, laughing, tickling, hugging, kissing, exploring, playing, and being brave.

Coz boy is this kid the bravest little person I have ever met.  In a world as overwhelming as ours is, as slow to respond to HIS needs, as sensory disregulating, this amazing little dude mot just survives, but thrives--in a way that puts to shame any excuses I have ever in mymlife made.

This, THIS is our autism:

Captain "E-Merica" 

Thursday, November 14, 2013

THIS is Autism: A response to Suzanne Wright's inflammatory, fatalistic, and defamatory usage of the term "autism" to gather funds and get attention.

I have been trying to find the right way to frame this to make my point quite clearly without coming off offensively or invalidating to those whose journeys are represented by Mrs. Wright's descriptors.  I don't know if I have achieved it, but here's my try.  

"'re one part of a set of divorced parents.  You have full custody of your kid and although you're maybe not the richest parent, you get by.  You might not be the "prime" family ideal being single and all, you are tired, you work so very much harder to be "both parents," but by Gosh you are a dedicated parent and you are proud of what you have and what your child have accomplished together.   But behind your back, the local anti-single family organization who only helped you once a long time ago during a particularly tough time right after the divorce uses your kid and your situation as a shining example for why this organization's agenda should be supported to garner money (and a little bit of respect for his/her position againt single parenthood) on the local political circuit.  He or she is raising funds to do anti-single parenting ads and what better way, s/he thinks, to get financial assistance than to take advantage of financial kindness "by way of 'the child(ren) suffer?'"  Complains that he/she was the child of a single parent and that it was the worst existence for him/her and s/he speaks for every other child of single parent homes.  About how miserable little Timmy's life is and how miserable s/he was.  And you're outraged when you find out because while you know that there are parents who DO need the help and kids who do suffer for being in a one-parent household, your child is not one of them and while you have no ill feelings towards other single parents, you feel flabbergasted that someone used YOUR child, made YOUR child's life sound infinitely horrible and sad and not worth enjoying to make a point.  As a parent, you are angry, you feel used, decieved.  What's worse is that now rumors are spread and the new 'truth' about town is that all single parents MUST be miserable and that ALL kids of single mom's must live a terrible life without the luxuries others get everyday.  When they see your kids, they make those eyes at him--the ones that say "oh, poor kid.  Destined to fail.  Probably a hot mess.  Wouldn't want him to ask my daughter to marty him.  Coz kids like know..."

Well, damnit (excuse my language but this bothers me), this is exactly how I feel about how Suzanne Wright, co-founder of Autism Speaks treated my child and the subject of autism in her op-ed on the 11th.  She took it upon herself to speak for me, about my son, to demonize him in a way that harms the hard work we have done.  She took on a spokesperson role for ME and MY CHILD and used MY son's neurology (and perhaps even my own), to collect funds to FIX my alliterative "Single Family," which in our case isn't fixable because it isn't broken.

Like different types of Single Parent families, there are different types of autism and different types of autism families.  We can't assume all children of single parent households are going to grow up and get divorced themselves.  Or that they are damaged by poverty.  Or that they lack some qualifications that will make them grow into fine, conscientious, productive citizens.

THIS is Autism:  

A response to Suzanne Wright's inflammatory, fatalistic, and defamatory usage of the term "autism" to gather funds and get attention.

I get that Autism is growing.

I get that autism is hard.  I know, I live it.  I live it as an adult working on getting diagnosed and as a parent of a child on the spectrum.

I get it--as an outspoken advocate and a member of a community of parents whose life quality IS much more heavily affected than mine.

I am not denying or invalidating the difficulty for any parent--or person--with autism. (Or single parents for that matter).

Nor am I saying that there are not some families who aren't living devastating lives due to the side effects of autism and it's comorbid conditions.

But this isn't everybody's autism. Certainly, it is a description many families have worked long and hard to claw out of.

In fact, if you were to poll parents, you would find that while autism, in general can be very difficult for everyone involved, that this latest generation of kids getting the services and supports that they need are flourishing in the majority and that there will be many from this newest generation who have every chance in the world--assuming it to something that they desire--to go to college and have very productive existences.

And there are also plenty who, with benefit from the new interventions will have a much better toolbox to live satisfying lives, both dependently and independently.

While it is absolute fact that there are children whose way to learn we have not yet mastered; who do not receive the services from which to build the toolbox of emotional regulation, sensory regulation, and communication, whose families are fighting with borrowed energy for insurance coverage, waivers, respite, therapists, and waiting lists, that this does not encompass the entire autism SPECTRUM.

And while using the bigger number might make it easier to get attention, at whose expense does the lumping of a spectrum of abilities come?


I am a huge proponent of awareness on many fronts, including research, action plans, insurance reform, educational opportunities, future planning, services and supports for both those with autism and their families.  I have been where those families you speak of are, and while it becomes the normal for many families, there ate plenty of us who DO overcome the grief and despair and come to terms with the autism of their families in a way that brings them joy and satisfaction.  I know the desperation, I do.  I know the sleep deprivation and the exhaustion and the long term effects of physical and emotional stretching.  I know the stress.  I know the depression.  I know the anxiety.  When we started the journey with our son, it was our norm.  I get that we need to address this.  

I am not, however, about to offer my son's dignity and value to the sacrificial altar to be imagined by the whole of the world he has worked so hard to share, as a burden, a "them" not worthy of "us," a family breaker, a reason for DESPAIR.  

I advocate for all families with autism.  Including those to whose reality Mrs. Wright's words refer.  But I won't sell my son short for her to use fear mongering and sensationalization and leave his reputation and hus future in tatters for her to make a point and raise some funds.   No, I won't allow her to rabble rouse the entirety of autism and risk the opportunity for my son to live an integrated and satisfying life--he (and we and his incredible team) have worked too hard to get this far for us to risk the credibility of his being and his voice.

 I. Will.  Not. 
 I won't do it.  
As a parent whose job is to protect my son, I REFUSE to abide it.  

Three million children aren't lost.  And to Autism Speaks, the largest organization to lobby for funding and awareness of autism, I do owe great thanks, because their funding has paid for research into interventions that have made sure that a whole slew of this three million kids are very, very much present, among us, with voices that need to be heard. But I won't pay them back by forfeiting respect and dignity for my son and myself and others like him.

So In response to Mrs. Wright's highly offensive speech:

Mrs. Wright, you say...If three million children in America one day went missing – what would we as a country do?

--First, Mrs. Wright, my son is not missing.  In fact, I know exactly where he is.  His is physically in his bed, rolled up burrito style with all his favorite stuffed animals.  The rest of him--is in my heart.  This kid is our world, our heart, our everything.  I have known where my son was all along.  The problem I had was teaching MYSELF how to teach someone else who learns very differently from the majority of the population so that we could connect on that higher level of communication.  But always Mrs. Wright, he has been very, very present in this world and in our lives.  Our kids deserve much more credit than you are giving them with this op-ed.  Isn't the very research Autism Speaks is doing proving to us that our kids are more aware than we credit them for?  That they understand more than we previously believed?  That we should "always presume competence?"

You go on to say ...If three million children in America one morning fell gravely ill – what would we as a country do?

--First we'd start by clearing up this statement of absolute hyperbole in respect for the folks who do resemble the description so that we don't make light of what it means to be gravely ill.  While there are a myriad of co-morbids (I have often heard the charming term 'Alphabet Soup' to describe the acronyms in the diagnoses),  a majority of children with autism are not "gravely" ill.  My son, like many others with an autism spectrum disorder may have a bit of his own alphabet soup going--starting with a low immune system.  So do I.  I do get sick a lot.  It's not my favorite thing.  So does my son.  And we both have anxiety and a little bit of OCD.  We're both kinda crappy sleepers.  But my son IS NOT "gravely" ill.  This isn't AIDs.  This isn't cancer.  This isn't an extremely antibiotic resistant strain of Staph occurring during open heart surgery.  And while there ARE individuals with autism who reserve the right to be called gravely ill, having lots of allergies and asthma and gastrointestinal issues and being sick a lot isn't exactly our idea of gravely ill--so please, please don't make it out to be something it is not.  It dors a "grave" disservice to the credibility of what will some day become adult citizens.  What sort of job would like to hire a "gravely ill" individual?  And as one day my son will very well be in the job market, we don't exactly want autism to automatically mean "terminally miserably disgustingly sick," now do we?  That's a pretty irresponsible way to plan for autism's future....

You reiterate again ...Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.

--I probably don't need to reiterate this, but I will, just to be sure you understand it.  My son and I have not lost touch.  In fact, with proper early intervention, with love and attention from home, with the confidence he has gained from seeing the fruits of his hard work to make connections, he has grown incredibly integrated.  I would even go so far as to say he is precociously integrated.  He can translate his inner dialogue outward in a way far more advanced his chronological age.  He can advocate and does advocate for his needs.  He speaks up.  Talking to my five year old is like talking to an old soul.  While his ability to communicate his understanding of the world might seem limited to an outsider, those who have learned his way of voicing things and who take the time to listen to him and develop an understanding for his "culture" know that his understanding of the world he lives in is quite advanced.   He is in possession of strong character and moral fiber.  He is very much an individual of value and substance. No, there is nothing lost or and there is no disconnect between my son and this world other than what comes from the ignorance of outsiders or is born of the unfairness of stereotypes.  And to say that he is "out of touch" or "lost" denies his very substance, the very character, the uncommonly beautiful insight of my five year old boy.  I would not dare let any Joe off the street impugn my son's absolute worth.  And I absolutely, whole-heartedly will not let my son be denigrated by those who are supposed to be advocating for his very worth.  

You accuse spectrumites of destroying families here....We’ve let families split up, go broke and struggle through their days and years.

First, let me get to the absurdity of this statement in the context of trying to recruit individuals and people to serve those on the autism spectrum.  If these "kids" are soo awful, who is exactly is going to sign up to work with them loke we need? Demonizing them only worsens the gap between supply and demand.  A high school grad who is not personally touched by autism isn't going to say after reading your description of these "home-wreckers," "Gee, that is EXACTLY the population I want to work with.  Let me go to college for THAT."  And if they do?  Imagine all the poisoned minds who will treat kids with autism as the proverbial "outside dog" to the veterinarian.  You know, the one that you have, but you don't really sink the dedication into THAT dog because its JUST the outside one anyway...the one who doesn't really need to be wormed or given Heartgard because its an outide dog thats gonna die young.  So how does THAT fit in the National plan, Mrs. Wright?

 There is no doubt that autism can be overwhelmingly stressful.  That there are consequences to not sleeping for years.  That autism costs money.  But if it were only autism that caused these things, then this statement wouldn't seem so blatantly blameful and unfair.  My husband and I are CLOSER than ever before because we had to learn as a team how to teach our son to build his proverbial toolbox.  We talk about everything because we know that we do have to be more attuned to our son, his needs, his education, his future, his emotional and physical well-being-- and our own boundaries, needs, and well-being.  Our strong marital foundations have more to do with our own toolboxes to handle stress, to communicate, and the amount of dedication we have as adults than it does to autism.  We could have gone bankrupt in the recession and lost everything and the stressful time could have been a breeding ground for our commitment to grow or for our commitment to one another to whither.  Autism, alone, is not an indicator of whether a marriage will survive or fail.  The toolbox that adults bring to the marriage--and the task of parenting--makes the greater difference. 

Financially, autism does have a distinct impact; of this the correlation is direct.  Given preference, I would not have chosen to submit to being a stay-at-home Mom.  We are all good at certain things and being at home all day is not my individual strength.    I stay at home because my son was blessed to get into a magnificent autism program.  There is no bus service to his program.  It's a few towns away.  He is also dual enrolled in a pre-K setting where I drive to the far reaches of the county.  Our fuel expenditures frankly suck and being a college-educated chauffeur doesn't exactly pay like a career would--this fact culminates in a lot of lost income.  And had we been unlucky enough to not be close to a Demonstration Program that is funded through the US Department of Education using the same funds that would pay for our son to attend regular elementary school?  That kick would be far, far, far, far worse.  But you know what?  My son could have developed a rare form of leukemia and I could be paying for plane tickets and hotel stays to bring him to a cancer hospital 500 miles away.  Our insurance could have maxed out millions ago and I still probably would not be working.  It is a difficult reality, that when in taken perspective, is not entirely an autism reality.  It's just reality.  What it DOES equate to is that autism alone is not the harbinger of evil.  A child's autism and a family's stress is worsened by the fact that some insurances will not pay for therapies, that some schools refuse to work on the need of some of our kids, that injustices abound of being stereotyped by a label rather than viewed with humanity;  the lack of supports and services can affect the physical and mental health of the entire family.  But these are outward, social issues.  These are the result of a one-sided world working to catch up.  The difficulties related to autism are far more complex outside of the autism than managing the autism itself.  Autism is not in and of itself always the end all/ be all you have chosen to make it out to be.

Our son does not give us reasons to despair and although we don't have the income we wish we did and I don't have the job I would prefer and we have had to work a lot harder than other parents to raise our son --nothing brings us MORE pleasure as a family as the little victories we cherish with our son's development.

And you undo integration here ...There is no national plan to build a city for 500-thousand people....

And there shouldn't be.  Because my son is very much a part of OUR city.  Because he's a citizen with the same rights as every other citizen.   Is this supposed to be some sort of Institution Megapolis??  Isn't the idea of mainstreaming and "least restrictive environment" to respect that we are apart of the same HUMAN spectrum?
 No.  Just.  No.  

...Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help....

My son worked hard at learning to dress.  But he CAN dress himself every morning.  Maybe his wardrobe choices aren't as varied as his Neurotypical counterparts--no long lines of buttons, no scratchy tags, no rough textures, no shoe laces--but he can dress himself very well.  My brave boy also worked very hard to learn to use a spoon and a fork.  And he wields them bravely trying new foods that he never would have touched before.  And he's learning to cook.  And make sandwiches.  And juice vegetables.   And while potty training is in progress, he has MADE progress, thank you very much.  He might not be good at some things, but he can function already quite well developmentally and independently at many things.  To undermine his hard work and the hard work of others like him so dismissively, to undermine and under emphasize what he has learned to do and what he can learn to do is insulting, hurtful, to say the least, and if he were to hear himself talked of like this, it would even be downright destructive to his sense of self-worth and accomplishment.


I asked my son earlier today about how he felt about himself and this is what he had to say:

Me:  You know you have autism, right?  How does that make you feel?
E:  I have a rainbow brain and it gets healthy when I eat fish and it thinks about superheroes and monster trucks and goes *bow pow bow* [using hand gestures to intimate that it "kicks butt"].
Me:  Do you think you are good or bad?
E:  I am a good boy.  I make good decisions.  And so does Lupe [his favorite stuffed lobster].
Me:  Autism can make some things hard.  Does it make things hard for you?
E:  I don't (meaning can't) have casein and casein is in ice cream.  But sometimes I eat yogurt.  Aunt J doesn't eat ice cream because it has lactose but she don't like yogurt.  And S [his cousin] doesn't eat chocolate because it gives her belly-aches.  And Mawmaw can't eat too much seafood, either. [makes a silly garbled full body gesture at being sick and then giggles]
Me:  So you wish you could eat ice cream?
E:  [wiggles brows to nod yes]  I can eat ice cream with P [a classmate] and he would say "thank you for sharing!" I'm a good friend!  I am smart!  And Lupe thinks I am really nice when I share with T and H [his classmates].
Me:  What do you want to be when you grow up?
E:  A soldier on a boat [a nod to my Father-in-law who is former Navy] and a chef.  And I want to work at N[local technological center] with Daddy making the internet safe!
Me:  Good job, buddy.  You always rock.
E:  [wiggles brows to nod yes and flicks his pointer at me] your Mom rocks.


Part of this plan we need involves things like valuing the abilities of our spectrumites enough to see them as employable, marketable, valuable members of the American Workforce and using language that reiterates that, for at least some of the spectrumites growing up, they are competent in ways that CAN serve a functional, productive role in society.  Part of that plan is to advocate for meeting the specific educational needs and styles of learning of those with autism.  Part of that plan is to ensure that individuals with autism have every right as the next person to healthy, holistic treatment, including but not limited to a healthy sense of self worth.  Part of that plan is to make sure that their voices are an understood, respected, and worthwhile component of the overarching American community.  (And right now those voices are vehemently disagreeing with Mrs. Wright).

Exactly how are we helping our spectrumite community become valued members of the American (and the Global) community if the very organization who appointed themselves as the defenders of said community has taken to defaming them, calling them burdens, painting them as parent parasites, life leachers, happiness killers, and breath stealers?  If the images we paint for them are hopeless, despair mongering, miserable excuses for existence?

You will have to excuse me if I find myself a little confused at how someone who paid themselves almost a half a million a year to push the agenda of the autism community, to advocate for their needs, and to increase the quality of life for the spectrumites of America just chased off their last [brilliant] spectrumite from their entity can still call themselves "AUTISM Speaks" and maintain their dignity?  If you are doing it because there is money to be made in marketing treatments funded by Autism Speaks, I can understand the business practice at minimal. We need the investment towards improving the quality of life and health of our spectrumite community.  In that case, manage the investment, leave the P.R. to the spectrumites. But an organization that consistently pushes the platform of semantics being a product of our beliefs and evidence of our attitudes (as evidenced by their backing of person-first language and the condemnation towards the frivolous and laissez faire attitude towards the "r" word) would put my son's dignity--and let's face it, his safety since the unwarranted fear towards autism and violence swirl around our community since events like Newtown--is irresponsible, incomprehensible, and blatantly hypocritical of all it does and SHOULD ethically stand for!

Its like being an organization entirely composed of men that promotes equality for women and gendre respectful language saying "Women have it rough in this world!  They bleed themselves ill every month and they bear body destroying babies!  They live an existence of suffering and misery and their menstration destroys families and their child-birthing tendencies bankrupt families!  Let us advocate for them to get jobs and be spoken of respectfully!  Let's support the men who deal with women and their disgusting bloody ways!

How long would this go on begote women screamed "Foul!?"

Our spectrumite individuals are calling B.S. But the same organization set to promote them is the same one discrediting their voice.

I am not exactly a marketing exec.  But if I were to have written an op-ed introducing our mission to enncourage a national plan, it would be a bit more integrated, fair, and antinihilistic.  It might go more like this:

This week is the week America will fully wake up to face the truth about autism.
What would we do if an entire population of children were being marginalized, quietly ignored, whose basic rights and needs being dismissed?

Today, three million children in America are diagnosed with a neurobiological disorder that can affect the abilities of children and adults to communicate, to socialize, and to adapt to change. 

 This neurobiological disorder, not to be confused with a mental disorder, is a spectrum of characteristics and manifestations.  The incredibly fast growth of diagnoses is far exceeding our plans for how to treat and plan for an entire population of children and adults.
Autism--Three million children who have a myriad of abilities and needs. 

Three million children—compared to just a few hundred thousand a decade or so ago—cramming the offices of doctors, nurses, IEP team members, Occupational, Speech, and Physical therapists, who need to see qualified psychologists, psychiatrists, who need help with allergies, with gastrointestinal symptoms, who need services to learn to meet their basic needs—needs in such complex array we are only now beginning to understand.
We would call out the forces and we’d pull up our bootstraps and we would
GET THINGS DONE.  We would climb the highest mountain and we would make sure our voices were heardWe would bang down the doors of the colleges and we’d say “why aren't you ready?” 
 We would demand funding for research and we would demand it ASAP!
As a nation, we have a responsibility for hundreds of kids being diagnosed every single day
at a rate of 1 in 54
to gear up and get into the action.  We would stop standing by with gaping mouths and we would step out of the darkness of denial and we would mobilize.

For the next three days, we will do just this—we will call out the force, we will pull up our bootstraps, we will raise our voices, we will bang on the doors and we WON’T be denied!  We will demand a national response!

No more. 
 Tomorrow in Washington, D.C. we will gather an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit.  We will demand a national response.
Don’t our families deserve it? Don’t our Spectrumites deserve it?  
America has always been about its great people, people of all colors, shapes, sizes, and even neurology.
Yet, we seem to have forgotten our children - and our children are our future.
Each day across this country, roughly 6 million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting.  Waiting to know that our children can sleep peacefully about their own prognosis.  Waiting for when parents can have the answers—waiting to hear that the futures for these kids have some certainty, waiting to get the services and supports and respite needed to meet our childrens’ and our families’ needs, waiting to hear if insurance will cover this proven new medication or that important therapy or to meet the needs of our population.  Needs that aren’t being met, are marginalized, and in return, our children’s potentials—the potentials of our citizens, our nation’s childrens—marginalized, undervalued, underdeveloped, under-attack from those who devalue and dehumanize the potential of those with differences. 
This is autism.
On the good days my hard working parents of autism out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally.  Physically.  And especially emotionally.
Maybe they have been up all night caring for their teenage child who’s having a seizure.

Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.
Maybe their child has been trying to bite them or themselves.
Maybe they can’t afford the trip to a doctor specializing in autism.
Maybe there is a waiting-list for ABA, speech and OT. 
Maybe their insurance won’t pay.
Maybe they don’t have the money to pay a special lawyer to fight for school services.
But they do it all—they do it because they love their children and they see their potential and they know that they are worth doing for—worth fighting for.
Yes, This is autism.
If any of this sounds familiar, you know autism.  And if you know autism, you know we are looking at a monumental crisis for serving the needs of an exploding population and the families/caregivers of this population. And at current, we have no national plan to meet those exploding levels of need.
What I described above is really just the beginning.  In the next ten years, 500-thousand Americans with autism will be growing up and out of the system which means they will no longer qualify for the services they rely on every day.
If we aren’t maximizing our children’s’ potentials, what are we doing for our country?  
How are we going to care for country’s needs if we can’t care for the needs of our individuals?
If we don’t start now,  what does that mean for our future?
If we don't have a plan, how do we expect to succeed?
Today in America, there is no national plan to create jobs, to serve the educational, occupational, physical, and mental health needs of an exploding population.

Just what do you think happens to all of these kids? |They grow up.

They grow up and without their toolboxes having the proper tools for survival, they face a crucial uncertainty.  
Who will care for these adults when their caretakers pass away?  Who will support their day to day efforts?  Who will they turn to when they are sick, are at risk for being taken advantage of?  
So let’s dial back a minute and consider the babies being diagnosed with autism every day in this great country. Do we have a plan for them? Are they all getting the same medical care and therapies across the board? Are we doing everything we can to give them the tools they need  to guarantee they get a fair shot at a productive future? 
--Because if we aren't then with our irresponsibility, we are failing ourselves, our country, and a population of American citizens who deserve the same sort of opportunities as every other American in this country--
Yes, we know children from minority and lower income families are not getting diagnosed as early as they should be, so their treatment begins later which might decrease their chance at progress.  This shouldn’t be the case.
How about in school?  Is there a national curriculum for our children?  Are we encouraging teachers around the country to share with each other lesson plans and methods that work for them? Is there collaboration?  Are our teachers getting the proper education and support to implement much needed interventions to maximize our children’s opportunities for growth and development?
Are our parents being supported, understood, valued, and listened to?  Are there needs being addressed as caretakers????

Some, you say?  Maybe?  Marginally?

We have no national plan.
Yet - our future depends on it.
Financially, we estimate it costs 2.3 million dollars to care for one person with autism for their lifetime if they must have 24/7 care. 
But money aside, these are our children.  Our responsibility.  The late scholar Neil Postman once wrote “Children are the living messages we send to a time we will not see.”
What is our message?
We can’t even craft one – without a national plan.
Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.
This is a national emergency. We need a national autism plan – NOW.
We are heading to Washington with a call for action on a national plan – NOW. We are asking our leaders to respond to autism with the urgency it deserves – NOW.
Washington – here we come – because we need to help our families – NOW.   Autistic Self Advocacy Network

Thursday, September 5, 2013

The Status Woe and the Status Quo: Challenging them both to make life better for our spectrumite population

The Status Woe and the Status Quo:

"If there is anything I’ve learned in my relatively eventful life, it’s that I’m not special or unique.  If something has happened to me, I know it’s happened to someone else...

There is so much more to say.  I’m just too tired to write more.
All my love,"

--Kelli from "When a Power Player Takes you Down" 3 September 2013, The Status Woe

The Status Woe and the Status Quo:  Challenging them both to make life better for our spectrumite population

I am sure  many of us in the blogosphere have heard the story of Kelli and Issy Stapleton by now.  If you have not, then you can click here to read the article by Eagle Record.  

So many of us are stunned.  Kelli was one of us.

Most of us are left with our head spinning and trying to figure out how this could have ever happened to someone like her—someone strong, and loving, and educated, and involved.

All I can do is try to make sense of it myself.

I don't condone or excuse Kelli's tragic choice to end her daughter's life--rather I believe you can't fix something you don't take the time to understand.  This situation is obviously indicative of a very complex problem within the framework of systems for support and treatment for families with children with severe autism. The problem here was fourteen years of failed systems.  Fourteen years of hearty advocacy culminated in all of the eggs of one family’s sanity in one single basket, a single answer for Issy’s aggressive behavior problems--the behavior plan. It cost the Stapleton family around $120,000 to get that answer. They put everything they had into a solution and trying to make it work. They went public, begging for donations. They sold T-shirts, had fundraisers. 


And then her last blog entry. 

Read it and it gives a perspective. 

In fact, before you go on, read her ENTIRE blog.  

Everything they worked for, their last grasp straw from the perspective of a Mom who had nothing left was taken from her. 

Do I think the Mother did the right thing--NO. 

But she chronicled this journey quite well--and it is plainly obvious that the system failed Issy and in turn failed the entire Stapleton family.  This system continues to fail other families every single day.

I gather from the blogs that Kelli probably thought that she was making the best of a bad situation.  She was trying to be humane.  Like some Maternal Dr. Kevorkian, she was trying to give her affected daughter peace and her abused daughter safety.   I don’t agree whatsoever with what she chose to do, but I feel if I want to solve the problem, then I have to understand her perspective.

I have euthanized pets before and it is an excruciating decision; I understand this from a heartfelt perspective.  As I understand how my grandfather could commit suicide because he was in too much pain to live a quality of life with cancer. That takes a lot of emotional commitment.  What could cause such an emotional commitment for a mother to kill her child?

It happens more than we’d like to admit.

But, it shouldn't happen.

It shouldn’t happen to these kids and it should  never have got this far. 

Kelli asked for help in all the right places.  

(again, I reiterate, I am not trying to excuse Kelli, but rather trying to see from her perspective so we can solve what I feel is a growing problem.)
 And still, this is what happened to Issy.

I know a family like this--a family in a very similar situation. I know them well and I understand that the system fails them regularly. Despite that we live in the same area, the same one that has amazing services for MY YOUNG child, but nothing left for her teen, a teen who was just hospitalized for the severity of his traits. 
From the outside there are a lot of what ifs….

There are two ways to judge a situation: “right or wrong” or “how and why.”  "Right or wrong"  is commonly judged in the court systems of our country; understanding “right or wrong” gives us emotional and logical justice.  It makes us feel safe, makes us feel that perpetrators will have justice served to them.  It is a reactive form of judgment, waiting until a criminal intent or behavior has occurred and meting out a "right or wrong," judgment up on that concrete event.   

On the other hand, “how and why” are the ways for we humans to figure out how to let it never happen again to anyone else. It is proactive involvement in trying to stop a problem from happening again.
How are you judging this case at this very moment?

If you are looking only to feel morally better and safer, then by all means.  Stop at “right or wrong.”  You have that right.  You are feeling normal human emotions and you need have no shame for feeling them.  You care enough to feel emotions about this case, and that is a great step.

But if you are outraged and you want this to stop, let’s all use our energy and extend our focus on the “how and why.” 

It's okay to believe this mother did WRONG, but want to know HOW and WHY they she it and so that we can do all that we can to stop it from happening again to anyone else.

I think there is an issue with this in the media.  If we don’t stop at “right and wrong,” then we are defending the person whom we feel so abominably about. 

But that’s not the case.  If we do REALLY care about these kids, we need to go past “right and wrong,” and focus on a solution.

Because isn't that what we do for our kids?? Every. Single. Day?

Instead of stopping at judging our children’s behaviors as right or wrong, we take the time to figure out HOW and WHY our children have those behaviors so that we can properly create a solution. It's why we go to therapists. It's why we use interventions. It is why we preach finding teachable moments and why we have studied psychology and medical biology and read and write books on the subject and why we do research. 

Please, for those who think I am defending this mother, please understand, I am not defending the choice to kill a person who does not have the capacity to make their own decisions despite that I am hurt that this could happen to one of our own. 

But rather, Kelli and Issy’s story gave to us something that IS valuable. She recorded her journey, and it should be read--and studied--and compared to others with journeys like theirs--for us to see what we can do to keep this from happening again. Otherwise, we are spending our energy stuck on “right or wrong” rather than “how or why,”  and what we end up doing is treating the SYMPTOM not the root of the problem.   “ How or why” answers results in positive changes. It makes things happen.

I don’t know what to do to solve world hunger, but what I do know about Autism, advocacy, safety, and human rights is that we need to come together as a group to advocate for the needs and services of our spectrumite loved ones—to fill in the gaps that leave them vulnerable. There needs to be a federal level plan to do more than just throw money out to pasture, for research that ends in “if you are fat your child will have autism and if you are skinny your child will have autism;”, federal level laws for insurance funding regarding research backed methods of interventions and medical services, federal level standards for care like we have for our NT children by school professionals. Our military families are often failed when it comes to serving children with autism. School districts openly pick and choose who is WORTHY to be served or to have money spent on. Insurance companies have the right to care less. 
And this is the result. This horrible, tragic result. 

I pray for this family and I pray above all for every family--and for enough solidarity to make a difference in how the systems of our country (the US) and other countries perceive and treat autism on the whole.

You see, I spent some time myself on the “how and why,” and this is what I see:

I see an issue happening like this in a lot of places. 

I see it being obviously a fatal issue, a fatal flaw in the systems of treatment and support available to individuals on the spectrum. 

I see a woman who I and others respected deeply for her work and her tireless efforts. No she is not the strongest of us; she says son her blog, but the point is SO MANY other parents who are connected in the blogosphere KNEW her--and respected her. She wasn't the one anyone would have expected to go this far, ever. EVER. 

She DID call emergency officials several times. She was hospitalized several times. SHE DID utilize that. 

Her blog pointed to her decision to try to end her and her daughter’s life being made because she felt like there were no more viable options to protect her daughter from herself or herself and her other children from her daughter.   

It was not the decision I would have ever made--and I don't think anyone thought it was the decision that she would have made. 

But the issue was the choices she “felt” she had—either to institutionalize her and recognize that it would probably mean that her daughter never get the help she needs, living only prison-like conditions or to make some sort of compromise and the compromise she found was murder-suicide, a choice that so many people resort to, whether bullied teenagers shooting kids at schools or lost souls shooting families at theaters or parents euthanizing their own children--AND THAT, my friends, is a huge, huge problem in our world today. For the safety of children like Issy Stapleton, Alex Spourdalakis, and the others that this happens to every day around the world, something needs to change in the system. 

Parent failures are too common here because there really is an extremely broken system of support. 

I have high expectations of people. I live myself with high expectations of myself and others because I believe we should live our lives using the tools we have to be the best we can with what we have. 

I don't, don't, don't condone the choice that Kelli made to take her daughter’s life with her own. I am heartbroken over this situation because I felt Kelli was one of us.  I don't take lightly to this sort of thing.  I preach often about taking responsibility for the self and our own feelings.

Before this happened, Kelli would have been the kind of person I would have liked to have coffee with.

She was THAT kind of smart, enduring, engaged.  Took that sort of responsibility for her actions.  

If it happened to HER, someone with so much fight and a huge toolbox and deep love, then by Jove it means that there are a lot of others at risk, too.  And if we spend more energy demonizing  the perpetrator rather than seeing to the issue, then statistically and psychologically speaking, we’re going to see this happen again very soon.

I believe that we parents of children on the spectrum are not handpicked for special traits that make us candidates for special needs children.  While I feel like there are blessings involved with every bad situation, not everyone has THAT tool, the tool for strength or wherewithal or for patience or for dealing with grief in their toolboxes of life . We have a child, we get our lives, we live within what we have and we work to make the best of it. 

Not everyone born into parenting special needs children or even neurotypical children are STRONG or RESILIENT or SMART or CAPABLE or has a sense of self. I see it everyday, have seen it many times in person in a professional capacity. 

Knowing the situation does NOT excuse Kelli but I know that this entire situation isn't without some value either. 

It again hits home the point--if a pillar, someone who fought for all of us so hard (and she did, she was a huge advocate in general, helping others as well), then it can AND WILL happen to many more. 

We need a solution. We won't get that solution by backing two different sides of a coin. We can be pro-vax, anti-vax. Half of us back one bill, half of us back another bill, etc. 


How about we look at this situation as a way to say Issy and Alex and the many others’  tragic endings SHOULD NOT EVER HAPPEN AGAIN. In order to make that happen, let’s take a moment and focus on solving THIS particular problem. Put away the vax/anti-vax, the fat/skinny mother cause, the other things as well. I know they are important to you as my beliefs are to me, but this is MORE important and it is urgent.  Let us put those things away for a minute and EVERY ONE OF US pen a letter to our congressman asking them to think about that little girl and others like her and to make them a PRIORITY. To get them humane services.  To not make them so difficult to attain.  To make them financially affordable.  To not make an entire state (as in Michigan) vie for a SINGLE MEDICAID WAIVER to help kids like this. 

Because Issy deserved more than this. Because Alex deserved more than this. Because our own kids, who are affected by what the media portrays autism to be--traumatic, miserable, waste of life, should be institutionalized because they can't be cared for--affects EVERY SINGLE ONE of our kids. 

Because it affects my friend whose son has dangerous tendencies has been told in the most legal words and politically correct words possible for a mother to hear that her son doesn’t need services like that.   Because they cost money.  And they cost school districts money, money they don’t want to part with. 

While other children get so much.   

In the same area. 

From the same Department of Education. 

Because HER son is affected like Issy. 

And HE deserves more. Just like every other one of our children. 

We can be angry about this; anger is normal. Outrage is normal. Hurting for Issy is NORMAL. But I'd really like for everyone to USE that anger and that heartbreak to get something DONE. 

USE it to advocate relentlessly for autism insurance reform. For my US families, for Tri-Care autism coverage reform. For school district reform. For Multi-disciplinary team reform. For having a 24/7 Autism Crisis Care line EVERYWHERE--not just in big cities or in certain regions. FOR EVERYONE, EVERYWHERE. One that won't make a parent feel like it's not an option because they will be offering their child up to be caged and know very well that the state will most likely NOT give back that child nor offer them any help beyond treating the symptoms and not the problem. Restraining them instead of giving them therapy and guidance. One that results in caring and respect and KNOWING that your child is going into somewhere BETTER, not worse than where they already are.  Knowing that there is a resource worker who will help the parent make the situation BETTER.

If you have that in your area, consider yourself lucky. Most don't. 

And they should. 

For Issy.

For Alex.

For every child's safety. 

Because they didn't get it when they needed it. And it's not right and it's not fair to them or any others who are in these situations.

Kelli was WRONG for what she did. But if there was a third option? A BETTER option?  THAT is what this raises the issue for--BETTER options for our kids in emergencies! Safer options! It shouldn't have to be a choice to give your kid up for fear that your child will be forever stay lost and heavily medicated for the rest of an individuals life or to feel that it’s something COMPARABLE to offer a peaceful death. LIFE needs to be an option! Thoughtful, educated, well-understood options need to be available. Options that understand the complexities of parenting a child so severely affected. 

In our area (and I believe nationwide in the US), there is a service called Bethany Christian Services. We had a representative in our offices at the non-profit I worked with. One of the wonderful programs they had implemented for our area which is horribly overrun with child abuse, poverty, and drug abuse since Hurricane Katrina devastated the region, was called the Safe Families Program. The premise is to offer safety during times of turmoil for a family. It is putting a child in safe hands when a situation has become unsafe, whether it is because a parent is battling addiction, has become homeless, or is having an emotional breakdown. It is NOT putting a child as a ward of the state, but rather, putting them in safe hands, but still having every bit of rights for the child.