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The Wait of the World

Alone By Cathy Jameson

Stories in the media usually carry some sort of hype. It’s how the newspapers and magazines sell.  Printed pages with flashy one-liners catch a reader’s eye, drawing them further into the article.  I don’t care so much for the “breaking news” strategy I see on the television or in print because the media’s ploy to attract me always disappoints.  What does get my heart racing, is reading pieces like Kim Stagliano’s article about a young mother in Texas who killed her children.  The mother claims she killed them because they were autistic.  Kim reminds us that murdering children, even those with autism, is not an option. And, our children, all children, should be valued.

Stories of children losing their life at the hand of a parent aren’t new.  Reporting on these stories isn’t new either. It does seem that we’re hearing more about autistic children their accidents and murders. Murders, with several instances of the parent committing suicide, are no exception. I haven’t counted but I think almost about half a-dozen cases were reported in the last year.

What saddens me about the stories is that we learn that the parent had mental instability, was without a solid support system or was down and out financially. The parents felt there were no other options than to end the life of their child and even themselves. Caring for a child on the autistic spectrum is truly daunting.  It can include educational, medical, emotional, financial, psychological, behavioral and physical responsibilities for the child; add in the family’s typical kids’ needs plus a spouse and your own needs and that’s a lot of parts and pieces to have in place. I don’t know of one family, typical or with special needs children, that has it made, perfect, peaceful, picturesque.  I know families with Dad working overtime or at two jobs to fund private therapy, Mom has her own addiction issues in order to face her reality and a once-faithful Church member is cursing God for the life they are living. 

Those people and how they cope aren’t restricted to the autism world. You find folks with larger burdens to carry in all walks of life.  Cancer survivors, the unemployed, family members of drunk driving victims, those who have suffered a terrorist attack, military members with post-traumatic stress disorder…we all are weighed down, some with overwhelming burdens.

Every bead of sweat that runs down my face, every tear that I wipe away, every aching muscle I feel after supporting my son hurts in some way—I’m either emotionally reminded that he’s got problems. I’m physically stung after a quick scratch to my arm when he wants to go in one direction but we need to go in another. I’m spiritually drained as I cry away a plea, a prayer, a saving grace to get me through a moment of terror.  I may act strong and well-put-together, but I am weak, I do cave and I do hate with a passion some of the parts and pieces necessary for Ronan’s every day existence.

What I find more compelling in these media reports about murdered children is a lack of urgency about the autistic child and/or parent’s situation.  It’s disturbing that there is a lack of a pivotal response, an absence of remorse to a horrific event, the calls for action to right a very serious wrong. 

Why the world hasn’t clued in to our children’s situation is beyond me. We had all of April to make every single human aware of autism. You remember that. don’t you? We saw the autism awareness ribbons fly across the web, public service announcements were made and aired, people donated money for research. That damn puzzle piece was everywhere. It’s quite a busy month if you think about it. After weeks of preparing to make April the best Autism Awareness month, some people work thirty days straight to educate the public, family members, their children’s providers and the neighbors with information on autism. In fact, some have done that every year and for a few years in a row: Hey, you!  Yea, You.  Do you know about autism? You do?  Cool, you know.  See you next April.

We have Autism Speaks telling us autism is here, it IS closer than you think. Whoopdee freakin’ doo.  A lot of us know autism is here.  Saiqa knew. Gigi knew. Daniela knew. Jose knew. Karen knew.  They knew all about autism and killed their kids because of it. While I wait for the rest of the world to catch up with the rising rate of the autism diagnoses, parents and providers like me will continue to celebrate their child’s differences while also facing the difficulties and the every-day hardships their child’s differences bring.  Some of us will handle it better while others will suffer under the weight of the all that autism brings.

Until the world takes hold and really hears the urgent message about the alarming 600% increase in autism, I will force myself to read the autism woes. I will continue to cringe keeping one eye closed because I’m scared to death to see some of the news about the autism epidemic. Like anybody immersed in the autism world, I read a great deal on what it is, what is does, where it comes from, who has it and then, I sit back and cry. Yes, I’m overstressed but I’m not that overstressed to murder my child, to put an end to his misery and my pain.

Some days I feel like I sound like a big idiot spouting facts and figures on vaccines, autism, parent’s rights and sticking to organic or green choices. I sound exhausted and frazzled talking about how difficult it is to be Supermom to my son and his siblings.  I wait for the light bulb to go on for some of the people listening to me. I wait for someone to offer more than just the pathetic, “it’ll be okay” look. I wait for the stranger to stop watching me man-handle Ronan out of a clinic. I wait for the schools to catch up to where my son should be and beyond. I wait for his doctors to show me respect when I share my worrisome reports of an increase in seizures. Instead, I’m patted on the head, shuffled to another department, told a lie, handed a script.  While I wait, I know that more of us are paying out of pocket expenses to bring our children to better health.  Some of us are paying for private therapy and instruction so our children will have more than self-help skills after leaving high school. Several are spending their entire savings so their children can live now and live better. Our own lives are put on hold but it’s for the good of our children, the ones we value, the ones we would bear the entire weight of the world. I’ll sit here but I won’t wait for help anymore.

It’s time to make a change because for kids like Zain, Faryaal, Jude, Jason, Ulysses and Kate, it’s too late for “awareness.”  But for Ronan and all kids like him, as hard as it gets, as long as it takes, I won’t give up  I won’t give up , ever.
--
Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

Benedetta

Amy in Idaho
Don't worry about. Aspies are quick to be judemental, and in the very next minute when things are explained in a different light they are the first to be the most understanding of the whole situation.

Amy in Idaho

@Aspie - I think it's great that you have achieved a level of independence and functionality despite your challenges. I take exception however with your statement "why not spend a couple of hours eith the child himself" when speaking to the inaccesibility (financial and supply-wise) of quality therapy. Really? I've spent over 70,000 hours with my son over the course of his short life - he still doesn't have functional communication skills. 70,000 hours of quality time with my child hasn't yeilded his ability to move from hyerlexia to reading comprehension. Huh, I must be doing something wrong I guess.

The spectrum is vast. Children with significant challenges require vast supports and therapies (such as ABA, RDI etc.) are just one aspect of providing support to that child. You may not have required ABA style therapy but there are many children who do in order to get just a slight bit of independence and functionality within their world.

As for relationships, yes - it would be wonderful if people walked around with signs on their foreheads offering a glimpse of how they would deal with every possible challenge and circumstance in life. And yes, if we were all perfect we would make perfect choices. But we're not - and that's part of the journey of life.

Finally, it's a bit presumptuous of you to say that parents don't know the capabilities of their children. If anything, we're screaming to the world that our kids ARE capable, they just need to have the proper supports. The ones that don't believe people with ASD are capable are the medical and educational sectors (with some exceptions of course).

Twyla

Cathy, you have such a wonderful ability to put into words those intangible thoughts and feelings that most autism parents share. Thank you for writing so well about what we experience.

Jenny Allan

I would NEVER presume to judge the behaviour of persons driven beyond endurance, but the comments on this thread and my own experiences seem to endorse the perception that things can and do improve.

My daughter and her husband 'went through hell' with my grandson. His pre school years were particularly nightmarish. He was a 'Wakefield babe'. Their 'salvation' was via the Walker Smith clinic at the Royal Free. The clinical treatment and dietary advice made all the difference. My grandson also received some positive behaviour therapy from a child psychologist to stop him biting. After that things improved enormously and my grandson has been very fortunate in receiving appropriate 'special needs' education within a mainstream setting. Now he is in his late teens, a charming and well adjusted young man, doing well at college. He knows his limitations and makes his own decisions. He adores Coke, but knows it will give him 'gyp' afterwards. He has it as an occasional 'treat'!!

I met two other young autistic men, about the same age as my grandson, at the recent GMC Wakefield et al verdict demonstration in London. I got chatting to them both. One handsome lad was at college and doing well. The other young person was in a wheel chair and could not talk, but we communicated perfectly well using other means!! Both of these young men were charming and a credit to their parents and families. I have also worked with autistic young persons and found this a privilege.

I do not want to give the impression that anything 'on the autism front' is easy. My grandson's parents have had to 'fight' for his rights to appropriate medical care and education, often having to wade through layers of bureaucracy and obdurate 'officialdom' in the process. The young man in a wheelchair referred to above features on the cover of Dr Wakefield's book.

The best advice I can give to despairing parents is to ASK for help and KEEP ON ASKING and DEMANDING if it is not forthcoming!! Governments must NOT be allowed to avoid their responsibilities to these children and their parents.

K Fuller Yuba City

People will continue to look away until the children with Autism outnumber those without. The unaffected families are still able to look at their kids with a giant Whew...it would never happen to us.
We have been at this for 14 years. 14 years of learning about autism, talking about autism, pleading about autism, educating about autism. 14 years of rolled eyes and people fading away, even family. 14 years of debt. BUT! 14 years of progress and gaining so much of our boy back. Reading about those who give up in the most horrible way, the ending of lives, is so very painful. Never give up, never.
~Believe~

Aspie

I'm one of the older aspies (ie over the age of 18)and am currently a computer science major. I've never had expensive therapy or ABA, but my condition improved due to dietary modifications. Spending tens of thousands is sheer insanity if you can barely pay the rent. Why not instead spend a couple hours with the child himself? You don't have to put yourself through massive debt. My mother spent hours with me each day and as a result, I was adding and subtracting at age 2. I was also reading sight words and short stories (Dick and Jane for example) at age 3. The insinuation that parents of those on the spectrum have no other choice is ludacris. You don't have to let go of vacations; my family never gave them up.

There is never an excuse for murder. I feel no sympathy for parents who kill their own offspring. I believe they should be imprisoned for life. The motivation for the murders are more than feeling overwhelemed. Most of the time, they are due to hatred for the child, as they view him or her as interfering with their dream of a "normal life".

As for the single mother scenario mentioned, although I sympathize, I believe people should make wiser choices. You should choose your partners carefully and live with caution. In addition, you should use all forms of protection necessary if you're not ready for motherhood. It's called being responsible. I do think the father should be held responsible as well and forced to pay via the court system. If necessary, his wages should be garnished.

I speak for many autistic adults when I say you don't know what your children are capable of. You may underestimated them or their schedule of development may be atypical compared to you would expect of a neurotypical. For example, I am years behind in my social skills as a result of my condition. I often struggle with social interaction and find it hard to make conversation in a group setting. I also struggle with obsessive worrying and anxiety. However, I am ahead in verbal reasoning and mathematical skills.

They may reach certain milestones later than the norm. Other milestones they may reach earlier. Uneven development is a noted characteristic of autism and this must be understood if you are parenting those on the spectrum.

As for vaccinations, some children with autistic symptoms have them as a result of mitochondrial disease and the body's interaction with vaccine ingredients. However, there are many of those who are born with the condition. It's not unheard of for unvaccinated people to be on the spectrum. As autism is a complex disorder, there may be multiple causes for a similar set of symptoms.

In closing, I believe the parents on this blog should listen to the words of those on the spectrum. Many of us can and do speak for ourselves. Our voices and opinions shouldn't be dismissed. We may give you insight into the minds of your children you may have thought unimaginable.

bensmyson

nhokkanen, you mean something like this?

On March 24, 1987, 250 ACT UP members demonstrated at Wall Street and Broadway to demand greater access to experimental AIDS drugs and for a coordinated national policy to fight the disease.

In January 1988, ACT UP Boston held its first protest at the Boston offices of the Department of Health and Human Services, regarding delays and red tape surrounding approval of AIDS treatment drugs.

On March 24, 1988, ACT UP returned to Wall Street for a larger demonstration in which over 100 people were arrested.

On September 14, 1989, seven ACT UP members infiltrated the New York Stock Exchange and chained themselves to the VIP balcony to protest the high price of the only approved AIDS drug, AZT. The group displayed a banner that read, “SELL WELLCOME” referring to the pharmaceutical sponsor of AZT, Burroughs Wellcome, which had set a price of approximately $10,000 per patient per year for the drug, well out of reach of nearly all HIV positive persons. Several days following this demonstration, Burroughs Wellcome lowered the price of AZT to $6,400 per patient per year..

ACT UP held their next action at the New York City General Post Office on the night of April 15, 1987, to a captive audience of people filing last minute tax returns. This event also marked the beginning of the conflation of ACT UP with the Silence = Death Project.

In December 1989, approximately 4,500 protestors arrived at St. Patrick's Cathedral during Mass in a demonstration directed toward the Roman Catholic Archdiocese's public stand against AIDS education and condom distribution.

In May 1990, ACT UP organized a large choreographed demonstration at the National Institutes of Health (NIH) Campus. According to Kramer, this was their best demonstration, but was almost completely ignored by the media.

On January 22, 1991, during Operation Desert Storm, ACT UP activist John Weir and two other activists entered the studio of the CBS Evening News at the beginning of the broadcast. They shouted "AIDS is news. Fight AIDS, not Arabs!" and Weir upstaged anchorman Dan Rather before the control room cut to a commercial break. The same night ACT UP demonstrated at the studios of the MacNeil/Lehrer Newshour. The next day activists displayed banners in Grand Central Station that said "Money for AIDS, not for war" and "One AIDS death every 8 minutes." One of the banners was handheld and displayed across the train timetable and the other attached to bundles of balloons that lifted it up to the ceiling of the station's enormous main room. These actions were part of a coordinated protest called "Day of Desperation."

http://www.avert.org/aids-picture.php?photo_id=561

HIV caused 1.1% of deaths for age 5-9 years in USA 1999 [NVSR 2001]

A July 2008 study compared mortality among Danish citizens with autism spectrum disorders (ASDs) with that of the general population. A clinical cohort of 341 Danish individuals with variants of ASD, previously followed over the period 1960—93, now on average 43 years of age, were updated with respect to mortality and causes of death. Standardized mortality ratios (SMRs) were calculated for various times after diagnosis. In all, 26 persons with ASD had died, whereas the expected number of deaths was 13.5. Thus the mortality risk among those with ASD was nearly twice that of the general population. The SMR was particularly high in females. The excess mortality risk has remained unchanged since the first study in 1993. The authors discovered that epilepsy was present in 8 of the 26 individuals with ASD that died during the study period and in 4 cases, epilepsy was noted as the underlying cause of death. Other common causes of death included infectious diseases, diseases of the circulatory system, and unnatural causes such as suffocation and drowning.

Causes of death that are elevated in this population seizures and accidents such as drowning, exposure to elements and suffocation, also from abuse such as asphyxial death during prone restraint and forgetting someone in a minivan for hours. Among those with severe cognitive impairment there was an increased risk of death from respiratory causes.

ACT UP? Doesn't seem to be a cause anyone is interested in. After all most parents can barely speak up at their IEPs.

But when you are ready to take to the streets, stand in front of a couple of tanks, give me a shout, Ill be there.

KHW

Our own families don't even get it (at least ours don't) - why would anyone so unconnected with with us get it?

And, Cathy, I had to laugh with this partial sentence shining the spotlight on some of the wake left by autism... "Mom has her own addiction issues in order to face her reality." My husband say's I'm addicted to info on ASD/health/toxicity. He's right.

What good does this information addiction do me? Nothing outside of my own knowledge. I know much, much more than just about anyone in my private world (outside of all of you) - and no one would listen anyway.

nhokkanen

Great question, Cathy -- Why hasn't the world clued in? Could it be compassion fatigue combined with media spin and blackout?

Sometimes I imagine subversive street theater troupes taking demonstrations of disruptive autism events out of home hiding and into public places -- civic gatherings, agency meetings, the Senate floor. This has been done to raise awareness of child abuse and spousal battering.

Unlike the experiences of battered children and parents, these impromptu performances would not involve physical contact. And conveying the pain of physical illnesses felt by children on the spectrum would be challenging theatrically.

But until others' lives are inconvenience and disturbed also, they will not truly understand what autism families are going through.

Cat Jameson

Beautiful, both you wonderful Warrior Dads!

TannersDad--you've grabbed the reigns of this mixed up world and are holding on tightly to right it. Your Feel Autism Yet messages are powerful and I'm thankful your voice is being heard.

Bensmyson--proud to know you and be physically close by to remind you that if I can deal with everything thrown our way, you can too! I love your outlook and am always happy to hear from you.

Keep the faith, boys. You both continue to inspire me to see the positive through the muddle.

Cat

Gatogorra

Thank you for this, Cat. My husband and I grouse to each other about this and that but there's never any question about which is more important: that we get to eat out and have vacations and toys-- or just live without the stress of constant debt-- or that the kids get everything they need to heal and thrive. There's only one choice and no alternative.

We're also "good" at falling apart. Life tries to the core, your personality shatters and you see it as an opportunity to put it back together as you choose.

What worries me are the people who don't have the structure or supports in their lives to do this. It takes a huge amount of bolstering to keep rising back up from the punches and, through no fault of their own (or through the fault of their prescribing doctor), some people are robbed of the ability to roll with it. Some have set backs from the start: imagine being a working class single parent in a dangerous neighborhood going through this. One cut off from family, rejected by commmunity because of a child's disorder, maybe naturally taciturn or with a cultural approach to hardship that "annoys" the bureaucrats who are supposed to help. The stakes rise and rise beyond human capacity to rebound. Throw some cheap scrips with violent side effects in there and the dye is cast for many and the tragedies stack up.

When things like this happen, it's a social problem, not isolated tribulations quarantined to "messed up individuals"-- which is how the media often treats the issue. Sharing "philosophies to live by" and "awareness" is a cheap substitute to social programs and cold hard funds.

But just as funding for AIDS was cut when it turned out that the current "face of AIDS" is increasingly dark and that mostly minorities were being stricken, funding for autism families has never met the demand to begin with because of the "eugenic" view of autism.

Only when society takes responsibility for epidemic and concedes that cause is environmental and preventable will we see any real support for the mounting catastrophe.

Parent

Thank you Cathy!

bensmyson

"I don’t know of one family, typical or with special needs children, that has it made, perfect, peaceful, picturesque. "

Thank you!

I told my mother, a woman that believes she will someday walk upon streets of gold, that I believe that if Heaven's the one perfect place it will have stop lights, things that break, it will have good food and not so good food in its restaurants. It will have stores with tempting items in it that I will have to save for, it will have debate, arguments, it will have fashion and style. It will have ugly and beauty, it will have competition and clocks reminding me of deadlines. In Heaven I will struggle, smile, cry, succeed and never be aware of the end of the movie, the final score, whether or not a project will work out perfectly. And all of our sons and daughters will not be perfect, they will be scared of the lightning and crawl into bed with us, they will stare off into space, never telling us why, but in Heaven, my Heaven we some how have faith and hope and God's grace to make this all perfect, to make it our own place, a place we live among the memories of our ancestors, their life's blood filling our hearts and their history packed into the tiny cracks deep within our brains showing us the pathway north.

I told my mother, that as far as I'm concerned Im already in Heaven, I died a long time ago when I became a Christian, I asked for this, actually I prayed for it, this is my life, this is my Heaven. We are only given what we are capable of carrying and if our faith is established, it really is just a waiting game, waiting on the Lord's next big surprise. To hell with everything else, my joy in life is the when I least expect it moment. Heaven is a place where something happens... at the last minute, when I least expect it, when I think I can't take one more step or shed one more tear. Heaven is that first kiss, yet just as important, it's also the kiss that never came.

I don't want to wake up someday and live a life where nothing ever happens, Groundhogs Day all over again, and again. "The best damn hamburger Ive ever eaten..." Nope I want Ben with me in Heaven, I want a project, I want poopie diapers, broken stuff, tears, frustrations, I enjoy searching for answers, reading through books and papers friends go out of their way to share with me. I want to accept the world I live in as Heaven, so tomorrow will never be the same, I want more than anything for something to happen. Murdering ourselves ends it all, robs us of Heaven, robs us of each other. Tomorrow will be different here in Heaven, you angels out there know that, ain't that right my good and strong neighbor? :)


http://www.youtube.com/watch?v=5zNdMc6wGtU

mary podlesak

Thanks Cathy for this reflection. So much of our support system has to come from our own internal stores of grace. Bereft as we are of societal support systems, even within the family sometimes, due I speculate, to a culturally determined elitist preference for the strong, good-looking and healthy(a misguided eugenic survival of the fittest philosophy), it becomes essential to renew those graces daily through our prayers. It is only by pleading-prayer, meditation, fasting and the sufferings we bear for the sake of our children that we can force our good God to help us aid our children, that is, "Christ in His distressing disguise", as Mother Teresa would put it.

TannersDad Tim Welsh

We are not alone. In helping to put the benefit for Tanner together the last couple of weeks, I am overwhelmed & humbled. I told the Elks that there were those in need that are in much more in need than us. They told me to "shut up this is for Tanner". They are learning though that some of the most giving people are giving more. It just makes me Cry. The lady at the bank advocating for us has a family member who has grown to the point he needs three to care for him, The friend who is a key organizer & Volunteer works with a single Mom with Three on the spectrum and one of the volunteer Bands has a mom of three that declared "I have a letter from my doctor that my youngest son will not get any more vaccines" Cathy I have been overwhelmed by everything as of late. Thank you for your story, it is obvious we have been mulling over the same thoughts. My prayers for all families dealing with Autism TannersDad Tim Welsh

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