May 24, 2010

Rest in Peace

Posted in AMT's Faves, Fun Stuff tagged , , , , , at 9:41 am by autismmommytherapist

Nope. Not dead yet.

I know. I’m tempting fate by writing my own obituary, but I’ve always been a “big picture” girl, have perennially enjoyed mentally fast-forwarding to the end of something to see how it worked out, then scrolling backwards to figure out the necessary steps to get there. It’s how I worked as an educator, how I acquired a husband, how I view my kids’ childhoods (hell, in Justin’s case, his entire life.)  Paint the picture you want, make the brush strokes to complete it. For the most part, as a life philosophy, it’s worked for me.

The downside of this philosophy is that I spend a great deal of time mentally ensconced in the future, and can sometimes miss out on life’s little moments. I view life, particularly the pieces related to autism, as a giant chess game (which, by the way, I suck at), with one false move proving irrevocable to success, and possibly resulting in capture or decapitation.

Not that I put any pressure on myself when it comes to my kids.

For better or worse, I’ve accepted this is who I am, so I will continue to plot, perseverate, and scheme when it comes to choices for my kids, whether it’s in regards to education, where they’ll reside, what they’ll (hopefully) eat, who their friends will be (sure Kim). I’ll make mistakes, of that I am certain. But hopefully the vast majority of my choices will result in a full, healthy, happy life for them and for their parents as well. I will also continue to wish for more advances in the realm of science research for autism, as well as improved Early Intervention services and better public school autism programs. I will continue to yearn for increased opportunities for jobs and housing for autistic adults, improved insurance reform, and better acceptance and understanding of autism within the community at large. Hopefully, these wishes will one day come to fruition, and this is how my obituary will read.

Since I like to control everything, you could bet there was a good shot one day I would write my own. Here it is.

KIMBERLEE RUTAN McCAFFERTY

March 15, 1967- March 16, 2073

(Had to get one last piece of birthday cake in there)

Kimberlee Rutan McCafferty, 106, who died in her sleep (one of her favorite places) on March 16, 2073 of natural causes, was known in her community for her autism activism, her writing about the disorder, and her commitment to her two sons.

Ms. McCafferty spent most of her formative years on the Jersey shore, where when not begging her parents to drive her to the beach, she could generally be found with her nose in a good book. She later attended Dickinson College, where she majored in French and was fortunate enough to spend her junior year abroad. She subsequently discovered she had a marginal aptitude for languages, but was gifted in travel, croissant-eating, and drinking at cafes.

After a brief post-college stint back in the Garden State where she attended Rider University and acquired her elementary education teaching certificate, she made the semi-bold move to leave home and settle in Washington, DC. She would spend the next fifteen glorious years teaching in both the DC public schools and in the Fairfax County, VA public school system, completing an M.Ed in administration from the University of Maryland, and having a blast with her eventual husband and friends. She adored those years, and was often quoted as saying DC was as much her home as her native state.

Eventually she and her husband, Jeffrey McCafferty, realized they had become one of those obnoxious couples who forgot to have a baby. After a few years of arduous fertility treatments and several IVF cycles they were blessed with their firstborn son, Justin Perot McCafferty. He would change their lives irrevocably.

Justin McCafferty was diagnosed with autism in 2004, seventeen months after his introduction to the world. Ms. McCafferty was soon made aware that despite living mere minutes from the nation’s capitol the Early Intervention system  in Virginia was grossly inadequate, providing only a fraction of the required hours of therapy her son needed. Since she was a former educator, Ms. McCafferty received training from an excellent autism agency, and subsequently conducted thirty hours of therapy a week with her own toddler for the next consecutive fifteen months. This experience so frustrated and exhausted her that she later dedicated a good portion of her life to making certain that every state in the union provided adequate early instruction to children on the spectrum. She was known to remark often how gratifying it was that research had finally afforded the opportunity to diagnose autism at birth, and with the new federal mandates requiring sufficient therapeutic intervention in place, how equally rewarding it was to know that every child in America could take advantage of the opportunity to make progress.

After realizing her local school system’s autism program, though well-run, could not meet her son’s need for individualized attention, she uprooted her family and brought her son and husband, the latter kicking and screaming, back to her former stomping grounds of New Jersey. She was known to say how she missed her adoptive home desperately, but enjoyed the benefits of living closer to relatives and tri-state area friends, good pizza, and of course, her beloved beach. A few months after her return she was astonished to discover a miraculous undeclared souvenir from her 10-year wedding anniversary trip to Aruba, and eight months later was graced with her second son, Zachary. She was known to comment that if she and her husband could get pregnant naturally after all their years of fertility treatments and experts telling them it was impossible, then anybody with a uterus should be able to do the same.

Her son Zachary developed typically for twenty months, then succumbed to regressive autism. Fortunately he and his parents took immediate action when the signs presented themselves. He was already residing in a state which recognizes an autism diagnosis, and was soon receiving many hours of intervention weekly from his therapists, and his much less exhausted mother. He responded beautifully, and within a few years was stripped of his special education status, mainstreamed into regular education, and was generally driving his parents insane with his incessant questions and “testing”. Ms. McCafferty is known to have said repeatedly how grateful she was that her native state provided such excellent instruction for her youngest son, and how grateful she also was that she didn’t have to conduct it solo.

After slowly, slowly, slowly, acquiring the necessary technological skills to compose a blog Ms. McCafferty eventually curried the favor of enough readers to have a “following”, which resulted in the long-awaited publishing of her manuscript. She is quoted as saying the day she signed the rights away was one of the happiest of her life, right up there with her wedding day, the birth of her children, and finally acquiring the necessary knowledge to correctly employ her DVR.

For the next several decades Ms. McCafferty was fortunate enough to see some real advances in autism research, and although a “cure” has yet to be found, there are now better medications available for alleviating some of the autistic symptoms that so tormented her own children when they were young. Through her writing and public speaking, Ms. McCafferty felt she played a miniscule part in watching sweeping reform subsequently unfold for autistic children and adults. She lived long enough to see some form of core therapies made available for autistic infants and toddlers in every state of the union, and watched as state after state capitulated to pressure from parents, and finally required every teacher of autism to earn an autism certificate as part of their university special education program.

She retained her faculties in sufficient enough form to witness all fifty states require insurance coverage of autism’s core and ancillary therapies, and was gratified to see a vast increase in employment and group homes nationwide for autistic adults able to benefit from such programs. Ms. McCafferty was a great public supporter of the farm where her son Justin eventually worked and resided, and was often seen mucking out stables, not too proud to return to her farming roots herself.

Ms. McCafferty was widowed in 2062 when her long-time companion, Jeffrey McCafferty, died swiftly and painlessly on the golf course at ninety-five. She missed him, but was gratified they had over sixty years together, much of it, despite difficult times, spent laughing.

Survivors include her oldest son, Justin McCafferty, who will through the benefits of wonderful state programs continue to reside on his beloved farm, with his brother acting as benefactor, and friend; her youngest son Zachary, an engineer; his wife Madeleine (indulge me, that was supposed to be my daughter’s name); their beautiful daughters, Emma and Margeurite (okay, I had a French theme going); and their sons, Tyler and Ryan. Collectively, they were Ms. McCafferty’s greatest joy.

Since most everyone Ms. McCafferty once knew was already dead, she requested a simple service at the Presbyterian church where she was married, and whose grounds have cradled so many of her relatives over the last two centuries. A simple marker will be placed in the cemetery in remembrance, followed by her family releasing her ashes over Sandy Hook, New Jersey. Her funeral instructions have been said to include the words “don’t forget to duck”.

Per usual, Ms. McCafferty followed through with her death ritual to the last detail, and created her own epitaph. It reads as follows:

She was tired. She was relentless.

She still had a great time.

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19 Comments »

  1. Mary Craig said,

    Loved this! I laughed & cried (just a little bit) but was also hopeful for so many of the same things. If Justin would like he could always work for My Megan on her farm where she’s planning on having a barn full of “Autism” horses and tons of dogs! She’s going to become a Vet she says each week on her way home from the barn and figure out a way for the animals to help the Autistic kids. Awwww! I know she’s a tiny advocate already! 🙂

    • Cool! I actually found a half-day camp for J for a week where he can learn grooming techniques, etc. Pretty excited about that, let your daughter know!

  2. LZ said,

    And may all of the accomplishments in there come true…

    Would it be too much to ask that they come true sooner, rather than later? Just the accomplishments, not the need for the obit… 🙂

    A thought for you…if you have ideas on how to implement these changes, share them. I am finding that I can secure things for my son, but once I get to that point, I am too tired (as you referenced) to think much beyond that. I am starting to look toward that big picture future, but how to get there is another story. Where to concentrate those reform efforts? Who to talk to, who to write to, how to get those conversations started and fueled and hurtling forward?

    Ideas?

    • Lists my friend, lists. Write down what you want him to accomplish behaviorally, educationally, etc. Start off with how you picture his life just six months from now. Work backwards figuring out who can help you accomplish these goals, therapists, teachers, friends who can help you out for a few hours, etc. I write everything down in part because I no longer retain anything, but in part because it all becomes clearer to me.

      Also, baby steps. One hurdle at a time, and if you can’t achieve one, table it, move on to the next, and come back later. Above all, be good to yourself!

  3. Emma said,

    Wow – this is an amazing post. I found it just by searching google for blogs on natural therapy for autism. You sound like an amazing person and I sincerely wish you and your family all that you have hoped for in this life.

    • Thank you, we’re getting there. I truly wish the same for you as well, if you have a child on the spectrum I wish you the best. I hope this blog will help!

  4. misifusa said,

    I think you left out that she was ‘a lover of dark chocolate, pinot grigio and time well-spent with friends’ as well. Amen. xo

    • Well said, although I think if I mention the middle one again in any more blog entries some people are going to do an intervention for me… You know me well, those three things are my life’s staple…

  5. Mom said,

    I loved it, although it gave me a jolt to see your obituary even though you had prepared me in advance! Hope I live long enough to see those 4 great- grandchildren! How cool that would be! I do know that I see Zachary taking great care of Justin always–you can see that in the way he shows compassion for others and lights up when Justin enters a room. Brothers they most definitely are. And that’s because as parents you have made time for both kids and they both know they are special and loved for who they are. Couldn’t be prouder that you are my “kid”. Love, Mom

  6. Carolyn said,

    You are amazing! Your blogs are like fine tapestries, woven together carefully. May you live that long life to see what may come, and to be able to savor contented, relaxed moments with your “boys” and your three life staples!

  7. Cindy said,

    You lived a fabulous life Kim. Sorry poor Jeff had to go first.

  8. Anita said,

    Ah so grasshopper! I was not aware of your need to project into the future – but it is a little clearer now. Very funny entry, you made me laugh out loud & I am supposed to be working! I’d like to be your one last companion by the way (sorry Jeff)!

  9. Kathy Milmore said,

    I hope I can speak at your funeral, dear friend. Or that you can speak at mine, Ms. 106!

    • My aunt has already requested I write her eulogy. She’s only six years older than me, so I have time… Let’s write for each other, that could be interesting…

  10. Amy said,

    You’re publishing??? It worked!!!


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