April 14, 2011

Eyes Open

Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged , , , , , at 10:59 am by autismmommytherapist

I recently subscribed to the official Autism Speaks Blog, which along with the Schafer Autism Report is where I usually turn to for any recent developments in the world of autism. I’m happy to say that the tide seems to be turning in the past year, with more and more positive articles being showcased by both publications, but I read one last week in the AS blog that stopped me cold. According to the article, a mother in Massachusetts apparently withheld cancer treatments from her severely autistic son, and he died. Now a jury of her peers has to ascertain her motivation for the purposes of sentencing severity, has to discern what was truly in her heart as she enacted this deprivation.

I agree with Margery Eagan, who wrote about the trial in her column in the BostonHerald.com. I’d hate to be in their place too.

Clearly, her son had the right to continued medication for the leukemia that reared its ugly head after a remission from his non-Hodgkins lymphoma, leukemia being a cancer with an 85-90% recovery rate, that according to the boy’s doctor was being successfully treated. His mother was not a medical professional after all, was legally charged with his care. This boy had a right to his life, however long or short it was meant to be. He was, literally, at his mother’s mercy.

I’ve never met Kristen LaBrie. I have no idea whether what she declared on the stand is true, that she was simply so afraid at how sick he was after taking the medications, terrified that if he fell further ill from the treatments she had to pry open his mouth to give him, that he would die. I will never know if the prosecutor’s spin is more apt, portraying a woman riddled by resentment at the small role her ex-husband played in raising their son, a boy reportedly consumed by allergies and severe autism years before cancer completed the ailment trifecta. I will never be certain, as with some cases that come before a court of law, if infused within the truth, in this circumstance, are varying shades of gray.

After I had read a few related articles to this story I tried to envision what the last few years had been like for this woman, regardless of her true motivations. The articles stated she was broke, and for the most part the sole care-giver in this child’s life. I tried to imagine my existence as hers, and I just couldn’t fathom it. I removed my educated, loving husband from the picture. I evaporated the security of salary, the knowledge we can provide for our sons’ needs on a daily basis. I destroyed the sanctity of sleep, because one of the side effects of the chemotherapy medications was her son’s insomnia, which of course, meant hers as well. I stripped away all pretense of any pleasure, and replaced it with the agony of watching her son suffer on every level possible, both physically, and with certitude, emotionally, for years. I literally cannot envision how one endures that much pain.

But her son couldn’t speak for himself. She was his mother. No matter what, she had a moral imperative to treat him.

There is one other absolute truth here that arises from this story of which I am certain, particularly during Autism Awareness Month. I am so grateful for the increase in articles regarding the housing situation for adults on the spectrum, and the coverage of the ever-growing number of states jumping on the insurance bandwagon to offer families some financial relief. I am thrilled that more and more school districts’ programs are being lauded in the press for their efforts, and that increased attention is being paid by pediatricians nationally to earlier diagnosis and treatment. Reading about documentaries highlighting the triumphs and challenges of two articulate adults on the spectrum makes me happy, as does an international campaign to “light it up blue”. To me, it all signifies progress, is a continued celebration of collective triumphs.

But I also believe it’s crucial to be aware of what’s happening to those around us, those individuals comprising our daily world who are struggling with the all-pervasive ramifications of this disorder, one that can often overtake our lives. It is crucial we are aware of how that neighbor is faring, how that nice mom in the special education PTA who looks so stressed is doing, why that father of the child in our son’s class looks so sad at the spring fling. We need to keep our ears, eyes and hearts open to what I consider our extended family, and offer a hand whenever possible. Mitigating the hardship of one family’s existence is just as important as lighting a talk show stage blue, writing a book that conveys comfort to thousands, or creating legislature that eases that backbreaking load families often carry for decades. And yes, we continue to require autism awareness on a worldwide scope.

But in order to prevent the recurrence of a tragedy like the death of Jeremy Fraser, I believe we require it just as much at home too.

March 16, 2011

In Memorium, Part Two

Posted in AMT's Faves, If You Need a Good Cry tagged , , , , , , , at 9:21 am by autismmommytherapist

This past Saturday morning, while leaving my husband alone downstairs to fend for himself with the wee ones, I snuck upstairs to steal a few glorious solo minutes in the shower. Of course, no trip to the second floor would be complete without a stop at our computer to compulsively check email/Facebook/how many hits I’ve had on my blog today, and since this is one obsession I’m loathe to deny myself, this time was no different than any other. Usually there’s nothing of great interest during the fairly early hours of a weekend morning for me, but as I tore myself away from the coverage of Japan, one item in my email caught my eye.

The Schafer Autism Report was out again, and I bargained with myself I’d simply skim the headlines, and save the “issue” to peruse later. There were, after all, two small, energetic children waiting downstairs to be released from captivity into any activity that does not include the four walls of our home, and I have my responsibilities. I reminded myself to skip shaving my legs (oh, what a sacrifice) so I could get downstairs sooner, began to swivel my favorite leather chair towards our bathroom, then stopped mid-swerve as I saw the headline:  “PA Caregiver in Autism Death Sent to Prison”.

Those kids would have to wait.

I first wrote about this horrifying event last summer (here), so if you want the full back-story you can catch up with my prior posting. I penned the piece about an autistic man literally boiling alive in a van due to the negligence, and unwanton cruelty, of a caregiver just a few months after a similar story of utter horror had run on the SAR. This story was beautifully covered by both adiaryofamom and MyBrainWantstoGoHome, and if you have time to read their posts, I suggest you indulge. Educating yourself on these matters may one day, for a child, result in the difference between life and death.

I chose in part not to write about the mom who poured poison down her autistic children’s throats partly because I felt these two bloggers covered the event so well I had nothing to add (an unusual event for me), and partly because I am certain this will never happen to my children. There may not be much I can control in life, but as I mentioned in my prequel post, of this I am sure. I will never kill my kids.

So, I decided to write about the ramifications of permitting a helpless, non-verbal, autistic man to die an excruciating death alone, perhaps within calling distance of his caregiver (had he of course possessed the ability to speak), because this is a possibility for my eldest child that haunts me every single day of my life. At some point, hopefully a long, long, time from now, Jeff and I will be dead, and Justin will be left to spend the remainder of his life without us. I predict that his brother will be able and willing to look in on him from time to time, but I am aware he cannot be his shadow twenty-four hours a day, for perhaps forty years. All it takes is mere minutes, or seconds perhaps, for his caregivers to forget he’s in a pool, or to turn their heads as he runs unattended into a busy street. His life could end because the sheer magnitude of caring for an adult autistic man every moment of his days will be overwhelming, and accidents could easily happen.

Or, as in the case of Bryan Nevins, he could be left to dehydrate to death in a car, while somebody who doesn’t give a damn texts her boyfriend.

As I sat in my slightly sweaty work-out clothes and read the short piece chronicling the outcome of the trial, I could feel my entire body tense at the words, felt an overall shudder of disbelief creep over my limbs. It seems that Judge Albert J. Cepparulo of Bucks County, PA was less than impressed with Ms. Stacey Strauss’s acceptance of her responsibility in her charge’s death. In fact, he was quoted as stating “Frankly, Ms. Strauss, I don’t believe I’ve heard a less remorseful statement from someone about to be sentenced”, with this remark following Ms. Strauss’s apparent sobs, which were bookended by frosty denials, as she pleaded her case.

Just to be clear, this judge, in his time on the bench, had never heard a less remorseful statement, as he subsequently sentenced Ms. Strauss to two to five years for involuntary manslaughter. And while I’m relieved there have been serious repercussions for the accused, I’m certain that punishment won’t alleviate the lifetime sentence Bryan Nevins’ parents had handed to them. They most assuredly will have to contemplate both the fact that their son is dead, coupled with how he died, until death itself claims them.

I would imagine those gruesome, unfathomable images will make their intrusive presence known to them often. Most likely, those visions will plague them every, single, day.

Maybe Ms. Strauss is congenitally evil. It is possible of course that she was just having a bad day, perhaps embroiled in an argument with her then-beau. It is conceivable she had a bad childhood. I can truly say, in each instance of excuse as to why she cruelly allowed this man die, that I most wholeheartedly do not give a crap.

What chills me the most however, is the possibility that she simply did not regard Mr. Nevins as fully human.

People have asked me frequently why I write this blog, and why others share so prolifically about their daily lives. I do not intend to speak for other writers, although I personally know a few who share my sentiments. I will, because I possess the precious gift to do so, only speak for myself.

I write about my boys because they are both exuberant, emotional, loving, children.

I write about my eldest son because Justin, for those he adores, has more empathy encompassed in his little finger than many adults I’ve encountered during my lifetime.

I write about Justin because my eldest is completely without guile, possesses perhaps the purest soul of any individual I’ve been fortunate enough to meet.

I write about my boys because their smiles simply take over their countenances, leaving those around them buoyed in spirit, forever altered.

I write about my boys because they are fully, and completely, human.

I wish, God how I wish, that today’s children will grow up with a different perspective on disability than perhaps our generation did. I pray that the school programs that have been implemented, the organizations, the television shows, the films, the books, the blogs, the laws, will continue to alter peoples’ perspectives on the inherent worth of our children. Perhaps, most importantly, the dialogue that transpires between parents and kids about that neighborhood child, or the one in homeroom class, will serve to further the cause. I can only hope from this hard work that awareness will continue to grow, and a travesty of these proportions will never be repeated.

And as I end this missive, much as I did my last post on this subject, I share these sentiments with all of you:

I am so sorry, for the sister who has lost her sibling, her childhood companion.

I am so sorry, for the parents who have unwillingly relinquished a cherished child.

I am so sorry for this man’s autistic twin, for his having to face life without his beloved best friend.

I am simply, so, so, sorry.

March 13, 2011

It’s a Miracle

Posted in My Take on Autism tagged , , , , , at 6:51 am by autismmommytherapist

This morning as I checked my email I noticed a new Schafer Autism Report was out, with the timely title “Is the iPad a ‘Miracle Device’ for Autism?” prominent in my inbox. I mention the title is timely because I just spent an afternoon at my son’s school getting acquainted with his new iPad, which has been fitted with “Proloquo2go”, or as I like to call it, the “miracle app”. Although every time that three letter abbreviation is mentioned I am compelled to think of food, I managed to focus during the ninety minutes Justin’s teacher and speech instructors introduced me and my mother to his new augmentative device (yes, I was proud of myself). It is, in fact, a miraculous contraption. As I navigated my way through the speech teacher’s carefully constructed folders (after making a mental note to make her show me how to turn the device on before the session concluded), I admit I was elated with the promise it held, the opportunities spread wide open for my bright boy.

Now I just have to stop perseverating on my fears of breaking the thing.

Justin has truly outgrown his former communicative device, the Springboard, which has since died an inelegant death after taking an impromptu swan dive during snack time at school. Fortunately, this dearth in communication lasted only a few days for my son, as due to the diligence of his school staff this new Apple contraption was almost ready for his use. For ninety minutes yesterday my mom and I were treated to a tour of its properties, with the two of us making a few suggestions here and there, while the technology wiz before us did the tweaking (you know it wasn’t me). Mid-way through the tour we watched breathlessly as a “button” was pushed which displayed the alphabet, its symbols revealed to us in all of its small and large-lettered glory. I sat in wonder as I realized this device, unlike his last one, is capable of “speaking” his wishes to the world, rather than simply spelling each word out loud.

Oh please, dear universe, I’ve let go of my dream of reclaiming my pre-birth semi-flat stomach for all eternity. Let’s permit this particular miracle to come to pass.

I’m excited for the other options on this program as well, the opportunity for Justin to reveal his feelings to us with the touch of his fingertip, the chance to “say” ‘Happy Birthday’ to his little brother. Hell, the staff even managed to create a page that diligently lists every Eric Carle book ever created, and since we possess each title in its now tattered and bedraggled form, Justin can even fulfill his literary needs without rearranging every bookcase in the house. I’m hoping that with a multitude of options laid out in colorful array before him, that maybe he’ll even begin to request more interesting leisure activities than his staple DVDs and plush toys.  Perhaps one day, he’ll demand an activity that would necessitate participation by his entire family.

Bowling, anyone?

I admit, as we perused the creative wonders of minds far more technologically savvy than mine (which is clearly not even close to giving the geniuses at Apple their due), I am completely consumed by one aspect of the device, the one that would simply open up the world to him. The truth is, my son doesn’t often communicate his wants to us or instigate conversation, has in fact primarily used his augmentative devices for academics and basic needs. As he’s grown more independent he’s mostly employed the technology for the former, which has been a bittersweet outcome for me. While I revel in his ability to meet his own desires, his newfound competence has precluded his wish to initiate any kind of dialogue with us. In the last year, his cumbersome device has often been relegated to the back corner of its table, left alone and ignored, rendered mute in its abandonment.

Today however, I’m allowing hope to creep back in once again. Perhaps the allure of these carefully constructed screens will elicit this desire to reach out to us, to commence any kind of conversation that transcends mere need. I am permitting the sometimes elusive specter of hope to make its return because I don’t believe I’ll hear my boy’s authentic voice during my lifetime. Despite his fairly tender age, I am convinced that the severe apraxia that so plagues him will effectively render his vocal cords mute forever, save for the plethora of vowel sounds that punctuate our days. I’ve accepted this fate for him and our family, have relegated it to the back of my mind, let the sadness of the situation go. As my grandma was fond of saying, “it is what it is”. To dwell there is not productive for anyone.

But maybe, just maybe, there are some miracles left in the universe. Perhaps one day, with the use of this wonderful device, me and my boy will simply have ourselves a little chat.