January 4, 2012

Dear Diary…

Posted in Fun Stuff, My Take on Autism tagged , , , , , , , , , at 4:00 pm by autismmommytherapist

Dear Diary…

That’s how each segment of my play starts, a script I wrote this summer when I was able to summon the maturity to ignore my pool and whatever Game of Thrones novel I was reading at the time. It’s the story of three mothers and their experiences with their autistic children, all of whom hail from extremely diverse backgrounds, and all of whom are raising children with autism who reside on various parts of the spectrum. One woman is a young mother struggling with her marriage as well as her son’s diagnosis; one is a rather devout Jew and single parent; and one is a college professor raising adopted autistic twins with her life partner.

I’ll confess, the lesbian is my favorite. She’s quite sassy.

I’ll also divulge to you that this past summer nobody was more surprised than me that I could write fiction. My last foray into this genre was a rather pathetic short story penned so long ago (the 80’s) that it is most assuredly residing in a landfill rather than a recycling bin. The truth is, the idea to write the play at all was in part born out of a desire to create a fundraiser for Parents of Autistic Children (POAC), a local and fabulous autism organization, and in part to promote another endeavor I’ll be speaking about at a later time. Frankly, I was simply thrilled I could do it, and equally honored that POAC agreed to let me produce it for them.

I’ll be announcing dates soon, and there may be multiple venues (as to my non-faux-humble surprise a few “real” theaters actually seem to be interested) but I’ll wait to formally announce until everything’s set in stone. I’m hoping to put on a few shows here in Jersey, and a night or two in DC, the city I consider my second home. Of course, when Tina Fey and Amy Poehler beg me to be a part of such a monumental event, I’ll graciously concede, and I’m certain Broadway will open its arms to me as well.

Tina and Amy might have a small part in that too.

When the “tour” is over, if it turns out that someone other than my husband liked my play, I plan on making my script available to anyone who’d like to use it as a fundraiser as well. There will be some rules (it’s a play about autism, of course there will be rules). Any individual interested will have to show proof of where the money’s going (I don’t want to find out down the road my writing contributed to someone’s granite kitchen countertops). Said individual will have to promise to read my words as written (if you have some differing opinions to express, write your own play). Although this isn’t a deal-breaker, it would also be lovely if whomever appropriates the script mentions I wrote the thing, and informs me as to how much money they banked for their organization.

And if you’re thinking you don’t have time to put on a play to support your favorite autism organization, trust me, this little theatrical contraption couldn’t be easier to produce. There’s no memorization, no dialogue, and no sets. Hell, there’s really no movement required at all. If you have a living room, a few chairs, and three women who can read, you’ll have yourself a free fundraiser.

Coupled with my goal of relaxing more in 2012 is my desire to throw things out to the universe a bit more, and I’m so excited to give “the theater” a try. I’ve already begun to learn about important things like building permits, fire codes, and soundboards. I’ve acquired my fabulous autism-mom/actresses, Dr. Robyn Leitner, and Babette Zschiegner from Peace with Autism. Most importantly, I’ve begun shortlisting songs for us to walk onstage to (most of my husband’s suggestions were inappropriate, I sense a contest on Facebook in the imminent future). So join me in April (dates TBA), and support POAC, a wonderful autism organization.

I promise, you’ll laugh a little, and you’ll cry a little. Thanks in advance for your support!

December 27, 2011

Purge Part Two

Posted in Life's Little Moments tagged , , , , , , at 3:42 pm by autismmommytherapist

Yup, it’s repeat time again.

I’m hoping all of you will forgive me. Frankly, I’m only able to get any computer time at the moment because Justin is looking at a new DVD downstairs, and Jeff is being chased around the house by a carnivorous dinosaur (my youngest apparently has absolutely no issues with consuming his father on any level whatsoever). So, I have a few minutes, and with New Year’s Eve looming around the corner I just wanted to repost my last year’s missive, and once again, thank everyone for their support.

Okay, mostly I just want to say thanks.

I truly appreciate all of you who read me frequently, and take the time to leave little messages on my blog. I’m thrilled with the support I’ve seen as I’ve become “syndicated” on the central New Jersey Patches, particularly because it means I might even be able to stay there for a while, and do some good for our community. Truly, I thank you all.

Hell, life is so crazy I’m even grateful when someone hits the “like” button for my posts on Facebook.

But mostly I’m just grateful as this second year of “mostly happy chez McCafferty” draws to a close for the love, friendship, and support we’ve all received from our families, our “old” friends (sorry guys!), our neighbors, our kids’ educators, and my newfound autism buddies. We could never maintain this mostly positive front without all of your support, kindness, and understanding.

Plus, I’d be a lot crankier most days, so my husband truly thanks you too.

I’ll close now, as it sounds as if said husband might be losing an important body part or two downstairs, and I don’t really relish a trip to the hospital at the holiday season. So, I’m leaving you with the pics that made the holiday card this year, as well as my 2010 New Year’s Eve missive that still just “says it all”. My best wishes to you and yours, and may all of your holiday wishes come true!

(Still loves Halloween, he is SO my child.)

(Apparently, the Easter bunny likes trains too.)

(My surfer dude!)

(No explanation necessary!)

Purge

Happy 2012!

December 22, 2011

Holiday Wishes

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , , , at 12:22 pm by autismmommytherapist

I know. Everybody hates repeats.

Each Christmas since I’ve begun writing there has been either some miraculous occurrence or some serious debacle with one (or both) of the kids around the holidays, an event of such significance I would feel compelled to write about it. This year, I have to admit, I’ve got nothing. Chez McCafferty, things have been (dare I say the word), almost “normal”.

And boy, does that feel good.

So, I’m summoning up the repeat, a piece I wrote last year about making a gingerbread house with Zach (constructed out of felt people, you are familiar by now with my lack of culinary skills). I’m reposting it in part because I just don’t have anything that fabulous to write about for my holiday post, and in part because I simply love this piece.

But for those of you who have been with me since last year (and there are more people than just my mommy now, it’s quite gratifying), I’ve included a little letter to Santa from moi, just so you don’t feel completely cheated (after all, how would you make it through the holidays?).

So whether you’re celebrating Chanukah, Christmas, or any other holiday, here’s sincerely wishing the best to you and yours, as well as a profound thank you for taking the time to read my little missives. I’ll see you for New Year’s.

Love and joy to all…

Dear Santa,

According to my husband I have been an extremely good girl this year (which means I’ve been slightly less than a cranky old harridan most days), so I thought I’d send you a letter with my requests (demands) for my exceptional behavior. We are an ABA family here, and since I’m well past “sticker stage”, here we go:

1) Bring me more patience to deal with my kids (and we’re talking a veritable boatload here).

2) Return some semblance of my failing memory to me. I’ll even take what I had at forty. I think I was “zippier” then (but I can’t remember).

3) Bring Kim Kardashian some post-divorce peace. We share the same first name, I feel compelled to do my part.

4) Let my autism play not sucketh.

5) Let me not lose all of my friends when I mention said autism play on Facebook 1,000 times a day after the holidays (and if I ever figure out Twitter, the same goes for that damn social media outlet too).

6) Did I mention bringing me more patience?  If so, refer to request (demand) #2 please.

7) Bring on the world peace (duh).

8) Let my boys remain independent, happy and productive (had to get one more serious thing in here!).

HAPPIEST OF HOLIDAYS TO ALL!!!!

New Year’s Evolution

July 7, 2011

Hiatus

Posted in Life's Little Moments tagged , , , at 8:03 pm by autismmommytherapist

It’s been three weeks since school concluded for my boys. With said finale came one excited child, namely my eldest who understands that this hiatus means trips to our local beach, boardwalks, and playing in our pool. It also brings one bereaved child, who is already mourning the loss of friends having the audacity to move on to kindergarten and leave him behind. There have been twenty-one days of sand and sea, moments such as when Zach declared he was “happy to be me”, joy, despair, and multiple trips to Starbucks by mom. I won’t say their mother enjoyed every minute of it, but it was lovely to have them home, and it will be equally lovely to see them return to their respective classrooms, which gives mommy an opportunity to wend her way back to sanity.

As I mentioned on Facebook the other day, I’m referring to my new best friend, summer school.

I happen to be a “balance girl”. I am grateful for the chance to be home with my kids all these years, but have never felt compelled to spend every minute of their consciousness with them. These particular children crave structure, and I find we all do better, mommy included, when our days are broken up into pieces. For Justin, this means attending the school, (and seeing the teacher), he loves so much. As for Zach, his education is an important part of the schedule, but so is down time with his toys, and an immersion into that coveted world of imaginative play. As far as I’m concerned, a little dark chocolate and at least seventeen consecutive minutes to read a good book are a definite requirement to a fulfilling day, even if those goals are carried out while sitting on a sidewalk waiting for a bus to return.

Yes, I’m still easily pleased.

While none of these crucial “components of happiness” were in evidence over hiatus, I will say I came to two very important realizations. Even though my “me time” had clearly gone on vacation without me, it became evident just a few days into having both kids around the house just how far they’ve come, both in terms of their behaviors, and their emotional states. Justin has displayed great taste in deciding to sleep past 4:00 AM again, and with a full night’s rest his OCD antics have dissipated, and his normally joyful soul has returned in full force.

Once Zach stopped waking up at night sobbing that he missed his friends (it had been only twenty-four hours since the last day of school, his is an exceptionally sensitive soul), he too became excited by the promise of what those empty, schedule-free days had to offer. Once their mom accepted that putting away six folded mounds of laundry and running errands would comprise the entirety of my personal satisfaction for the month, I got into the groove as well. For the most part, things ran smoothly with few hiccups. Our entire household was generally happy. It was as good as it gets here.

I realized it was the very first time I could honestly say summer hiatus was fun.

The second realization I’ve come to is that the years have begun to take their toll, and I am no longer as my dear friend so aptly puts it as “zippy” as I used to be. My kids require a singularity of focus, and at the end of a fifteen hour day in the company of small children, I found myself completely devoid of energy. I used to be able to grab seven hours of sleep and conquer the world, but at the end of these particular days, I found brushing my teeth to be a struggle. I’ve discovered I had to let things go for a while, like abandoning my cuticles and postponing the reading of a number of bloggers I admire. At least with the latter I tried, often propping myself up at the computer after the kids were tucked in, wondering if attempting to read these writers’ work was such a great idea as my vision blurred.

For a short time, I was a very bad, bad, bloggy friend.

It seems my body is telling me to slow down a bit, which isn’t the greatest of timing since I have a four-year-old, but I’m going to give it a try. I live in the moment more (particularly now that the moments are more pleasant), and I’m figuring out how to say “no” to people, which hasn’t been easy for me. I’m attempting to read more, a staple component of my happiness, and perhaps only multi-task three things simultaneously instead of a dozen. Finally, I know that I’m only able to contemplate this shift now because my kids are in a really good place.

Scratch that. Let’s say, in general, they’re in a great place.

I tell people constantly to take care of themselves. Now that the chaos of autism has quieted a bit in our household, it’s time for me to take heed of my own advice. And as my beautiful boys board their buses, I think I hear a lounge chair calling. I’d like it to know I hear it’s siren song, and at least for a short time, I will obey.

And I hope in your own way, you can join me too.

June 4, 2011

New Website

Posted in Uncategorized tagged , , , at 11:59 am by autismmommytherapist

Much to my great surprise, people are beginning to ask me to promote their projects on my blog, a source of wonderment to me matched only by the fact that I’m actually managing said blog independently (ask my much-relieved husband if you don’t believe me). So, today I’d like to promote a new autism website that’s sprung up “on the block”.

The name of the website is Autism Awareness New Jersey. I heard about it from a friend a while ago but it took me a few weeks to check out their site, what with those sixteen consecutive days of no-break childcare and the subsequent reprieve of our trip to Mexico, but eventually, I got there. It encompasses much of what is transpiring in autism in New Jersey, so it’s a place for “one-stop-shopping” if you don’t have loads of time to refer to different URLs (look at me, so fancy!), and really, who does. Their home page outlines various upcoming fundraisers, POAC events, and general news in autism, as well as highlighting events around the state on their calendar. They have a “Links” and a “This and That” section, both of which promote contributors to the autism community and to POAC (yes, I’m listed, no, it’s not the ONLY reason I’m promoting the site). Finally, they know how to “tweet”, a skill for which they have my undying admiration, as some days I still feel like a Facebook novice (if I haven’t “friended” you yet, you now know why).

It’s definitely a site worth checking out. You can visit it at:

http://www.autismawarenessnj.com/Home.php

Thanks in advance for your support!

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 1, 2011

POAC Gala 2011

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 12:44 pm by autismmommytherapist

A few weeks ago, Oprah announced to the world that she had located a long-lost sister she’d never known existed. Once I picked myself up off the floor (because really, doesn’t Oprah know EVERYTHING?), I admit I deviated slightly from my stimulating morning schedule of writing/laundry/Facebook, and delved into her story. It turns out Oprah has a half-sibling nine years her junior, a family member until recently kept hidden, completely lost to her. I can imagine she must have experienced ambiguous feelings surrounding the discovery, perhaps joy at finding a part of her heritage, perhaps regret at not having known her sister sooner (trust me, I do not presume to comprehend the inner workings of Oprah’s mind, I am certain it must be illegal). All I know for sure is that the universe granted her a new branch of family, with all of its inherent similarities and differences, residing practically in her own backyard.

And if you have a child with autism in New Jersey, Parents of Autistic Children (POAC) can be that new leaf on your family tree for you as well.

This past Saturday evening my husband and I had the pleasure of being invited to the annual POAC gala, at the Eagle Ridge Golf Club in Lakewood, New Jersey. I was, as usual, deliriously delighted to get out of my house (it was the first time I could breathe without steroids in a month, it doesn’t take much to excite me these days). The boys’ Grandma and Aunt Kate had been kind enough to volunteer to keep them alive so we could attend, and frankly I couldn’t wait to arrive at our destination (free babysitting, drinks, dancing and prizes in lieu of me in my bathrobe watching 30 Rock on our DVR, what’s not to like?). After a brief skirmish with my “bra master” that Jeff ultimately won (phooey on that first grade teacher who told him “brains yes, hands no”) we were finally ready to depart, and for once, nobody threw themselves across my stockinged legs and pinched feet and begged me not to go.

(No, Jeff’s not a giant, he’s just a yard taller than me)

All hail the power of Grandma.

It’s a beautiful venue, and thanks to the diligent efforts of the gala planning committee and the staff at Eagle Ridge, the entire affair was lovely. Faux fires spaced strategically around the rooms rid the air of that damp winter chill, the open bar was, unlike my twenty-something remembrances, not thirty people deep, and the appetizers were delicious and plentiful (did I mention the open bar?). Due to the benevolence of one of the primary volunteers for the organization Jeff and I were seated at a primo table, which although its proximity to the DJ would render me temporarily deaf for a few hours that night, did afford me the opportunity to survey the room and its occupants. I’d have to say it was almost a giddy crew, including many parents with offspring on the spectrum, grateful for a break from the usual grind.

In general, when it comes to entertainment, we are a people easily pleased.

After somewhat reluctantly tearing ourselves away from the hors d’oeuvres and cocktail hour (free samosas, yum!), me, my husband and a few friends I’d been fortunate enough to have assigned to our table made our way to our seats, and settled in. There was already food set before me which made me inordinately happy, and once most of the assembled guests had taken their places, the lights subsequently dimmed. Gary Weitzen, the president of POAC, took the floor. He then proceeded to deliver a speech that momentarily made me abandon my salad AND my breadstick.

Trust me, that is no small feat.

(Gary Weitzen, president of POAC, and all-around good guy)

As he dove into his recital of POAC’s myriad accomplishments over the last decade, he began with an anecdote many of my readers can relate to, one that made me regret not bringing to the party both my mascara and my lipstick. In a moving tribute to his child, he shared with us the devastating day a specialized pediatrician had told him, and his then three-year-old son, that the latter had major developmental delays. I wrenched my eyes away from Gary for just a few moments during his discourse, glanced around the dimly lit room, and noticed many heads nodding, viewed multiple bodies braced against chairs in anticipation of what surely was to come. Of course the crushing blow arrived in the form of an almost casual chaser, “your son has autism”, which quickly concluded the physician’s visit. Sadly, I am certain our POAC president, even in this day and age, is not alone in his suffering through the brevity, and coldness, of that concise phrase.

Gary shared with us that he drove home alone from Philadelphia with his son, mired in a fog that he couldn’t seem to dissipate with wiper fluid or headlights, until he realized its origins commenced with his own eyes. This was 1997. There were not as yet thousands of agencies, websites, blogs, and chat rooms for parents to commence their descent into the labyrinth of scant local services. There were autism organizations throughout our state, but there was nothing reminiscent of what we today know of as POAC. Free, plentiful trainings for teachers and parents throughout New Jersey, did not as then exist. Law enforcement did not readily have the option to be instructed in the signs of autism, were not frequently educated in the ways in which an individual on the spectrum might react in a stressful situation. Perhaps, most importantly, there were precious few opportunities for parents to congregate with their children in safe environments for recreational purposes, always for free.

(Simone Tellini, Training Coordinator, and a POAC mover and shaker)

Rather than capitulate to that reality, Gary Weitzen transcended that fog, and rose to fill the void.

I could share with you that POAC, in addition to offering the services listed above, is the largest provider of free autism training and education in the entire state. I could inform you that its classes for teachers and aides, focusing on the core deficits of autism, namely communication, behaviors, and socialization issues, have literally transformed entire classrooms. Finally, I could regale you with the joy I feel every time I watch my eldest child mount his ride, tell you that his intense love for the equestrian life would never have been discovered if POAC hadn’t pursued a local horseback-riding farm, and requested that they host an event.

I could tell you the latter, but then I’d just be bragging.

Instead, I’ll share this with you. I am so thrilled this organization exists in its many manifestations, with its bountiful services at my fingertips. I am so intensely grateful for the numerous companies who fund its endeavors, many of whom have only tenuous connections to autism through a valued employee. Watching my friends, and numerous people I’ve come to have a great deal of respect for whoop it up on a dance floor was a joy (and yes, me and my husband were most certainly included in that gyrating posse). In an act of over-the-top abundance I not only won a basket through the elaborately constructed raffle (then had to be educated as to who Ed Hardy is, it’s sad getting old), but I believe I’ve also scored a new playdate opportunity for my youngest, just one town over. I could tell you, with all honesty, that my oft-filled wine glass overfloweth.

But I’ll relate this to you as well. At the end of a beautifully constructed film montage, resplendent with unforgettable images of our children and their triumphs, one phrase, recited by those young voices able to enrich our lives with intelligible sound, rang honest and pure. In a world where often nothing is certain, this truth is indelibly clear.

We are family.

For information on how you can volunteer for POAC, or simply enjoy their events, please visit the website at:

www.POAC.net

August 26, 2010

Guest Blogger Thursday

Posted in Uncategorized tagged , , at 6:12 am by autismmommytherapist

Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist

Today’s guest blogger is Brian Carr, a family friend, lawyer with a heart, and an exceptional writer to boot. Brian (and his lovely wife Jeanne) were two of the innocent bystanders I conscripted to read my original manuscript last year, and the fact that they still speak to me is a testament to our collective friendship. There are some wonderful insights in his missive today, and frankly, I think multiple copies of the second portion of this piece should be dispensed to all parents whose children receive an autism diaganosis so they can pass them out to friends and family (it’s just that good). Many thanks to Brian for giving up sleep to write this (I would never be that nice), and enjoy!

To Guest Blog or Not to Blog. By Brian Carr

“How’d you like to guest blog?” Kim asked my wife and I. That hadn’t taken long. We’d barely sat down with a drink and some chips, having shunted the kids to the pool, when Kim was already asking this question.

I suppose it was my own fault in a way. Saturday was our annual pool party pilgrimage to Jeff and Kim’s house. This month my wife Jeanne and I will have known Jeff for 25 years (since college) and Kim for maybe five years less. It was our job to bring the cheese and whatever else old college friends can offer. Mostly relaxing, casual and clever chat, the easy conversation you slip into with those who knew you before you had to pretend to be adults, when ill-conceived escapades ended up on as fond but secret stories, not broadcast on Facebook to future employers and the world.

It was my fault because Kim asked me how I was doing, and I’d tried to generously volley, saying, “Fine, but how are you? – I’m not the one pushing the rock up the hill.” After a short update on her blog, out came the guest blog question.

Guest blog? Was she honestly asking me to do something just 15 minutes after getting here? Wasn’t it enough that I’d spent the early afternoon the last place I wanted to be, stuck on the Garden State Parking Lot, crawling through traffic all the way from New York. Our two girls 11 and 14, were keen on their pool, but surely there has to be a pool that doesn’t require a 5 hour round trip. But it was a trip I made happily, if grumpily as we sat in traffic, a slog relieved only by a high speed motorcycle/state trooper chase up the breakdown lane, the only possible place to get a speeding ticket that day. The cops are probably still writing tickets.

“No,” I said, pretty quickly, “I don’t know anything about autism and I’d have nothing to say.”  Subject changed, we spent 5 or 6 hours of enjoying beers, burgers and good company, then headed back to New York. Around 2 am I woke up, thinking about the guest blog thing. Ideas? None. What do I know about this?

I’d managed to write something before which was helpful, but that was totally inadvertant: our Christmas-time family “newsletter” 5 years ago. I wrote it because…. I hate family newsletters. Which is why mine explained that I’d had such a bad year, having read in their holiday missives how wonderful everyone else’s lives were, about their great jobs, vacations and most of all their perfect kids. The sense of inadequacy, I explained, was driving me to drink, what with my wife who was tired of me, our un-exceptional children, disappointing vacation and generally dull life. After 2 pages of moaning, I concluded by saying that, “while things could always be better, we remain hopeful and most of all thankful, especially for our kind, forgiving, self-actualized friends. From your newsletters we only hope to glean the missing clues to a happier New Year.”

We got three reactions to this little stunt. Some thought it was funny. One couple, close friends, immediately called, offering to help put together an intervention. Seriously. We’re here for you, they said. Which they are, bless them. (Just for the record, they’re earnest newsletter writers. Most earnest.)  And then there was Jeff and Kim.

They dubbed it one of the highlights of their year. Almost at the end of their rope from dealing with Justin’s diagnosis, they explained that, that year at least, the circumstances made it too painful to read the otherwise welcome news about everyone else’s children. Hearing about someone’s comic disappointment on the other hand – the first we’d laughed in ages, they said. And so it was that I got to be useful again to them that night, just by listening for an hour or so over drinks in a New York City bar on a rare early day away from autism, as they described their weariness and isolation from having to tend to Justin constantly, the endless bureaucratic struggles for his care, and how I’d accidentally been helpful in print.

But what to say now? About the most I’d had to offer Jeff and Kim directly on topic was early on, putting them in touch with a former high school girlfriend and her husband whose oldest son was autistic and who were very involved in research fundraising. If nothing else, it was someone farther along in dealing with the situation who might offer some words of knowing advice.

Maybe someone could offer a few thoughts about how to interact positively and help out a friend or acquaintance with an autistic child. After thinking a moment, I had to assume this has been done before – my wife says there are no more original thoughts (I’m scared to ask her whether her pronouncement was one since she’s always the exception to her rules). Rather than research the topic to prove her right yet again, and because different things work for different people, I decided to list a few of my own thoughts, such as they are, if only to remind myself of my own goals.

After mulling the categories, it seemed that there was a decent overall rule of thumb, which is not a bad place to start: do those things you would to help someone with any other long-term medical condition.

Don’t withdraw. No matter how casual your relationship, no one wants to think that their child’s condition has made people pull away. Some people don’t deal with illnesses and serious issues well, but you can be sensitive to how you go about things if that’s the case.

Make yourself available. Don’t be afraid to offer. You don’t need to be there all the time for someone in order to be helpful. It’s a comfort to hear someone say that you’re there for them whenever they need you, even if they never take you up on it. Let them decide when to ask. You can discuss when they do whether you’re comfortable with the request.

Don’t contact them every time you see an article or a news story. (There was a featured story in the New York Times just today). Chances are, they’re already reading everything they can about the subject and thinking, if only I researched more… And everyone else is pointing out the latest article. Read a few yourself and you might notice that most articles are general and don’t have anything new or specific to offer. (Probably not this one either for that matter).

Every child is different. Remember that just because someone else you know has a child who’s made great progress doesn’t mean it will translate or apply. Chances are, they’ve researched the therapy in question and considered it. Someone else’s success is great for them, but that’s a painful reminder.

Give them a break. Autism is a full time job for parents. Marriage, work and parenting are hard enough on most couples even without the challenge of trying to help a child to live with, if not overcome, autism. Whatever you can think of that will help ease the load is probably a good idea. Visit, call, send joke spam, send a random gift basket or something for no real reason. Some part of their day has to be their own.

Educate your own children. If you’re going to visit someone with autistic children, explain to your own children what to expect. Children with disabilities are often mainstreamed today, so your children are probably in a better position to understand this than when I was kid.

Don’t brag or complain. Parents of children with autism don’t expect everyone else to stop having their lives which are autism free. By the same token, they also don’t want to hear someone brag about their perfect children, the overcompetitive striving we often default to as we begin plotting almost from birth what college our child will attend. Complaining about how hard our own minor troubles are doesn’t seem to go over well either. Instead, show equal interest, perhaps let them lead the conversation to topics that are comfortable.

Pray for them. I wasn’t much for praying when I was younger but that’s changed over time. Thinking about things beyond myself helps keep the big and little things in perspective, and the details become less stressful. To me, praying is like the moon. It’s far away, but it affects the tides, the spin and even the shape of the earth. If you can, tell them they’re in your prayers. Even if you’re not religious, tell them they’re in your thoughts. How many of us watch TV and cheer on our team as if it has some invisible effect on the game? If you can believe in that, why not cheer on a friend. It’s helps to know someone is pulling for you, like your own fans, your very own moon.

Write a guest blog if you’re asked. A day off from blogging might be a nice present. This one’s for you, Kim. Enjoy. You’re all in my thoughts and prayers.

August 25, 2010

Memories

Posted in My Take on Autism tagged , , , at 6:31 am by autismmommytherapist

Some people employ their green thumbs in their gardens, immersed in a hobby for which I have apparently zero aptitude if one counts the corpses of half-neglected plants strewn around my home. Some people Facebook (when did that become a verb?), because evidently it has become imperative in our society to share every thought we have the second we have it (and yes, I’m on it). Some play golf, an activity I used to excel at as long as there was a windmill involved, and the opportunity for a free game and the potential for ice cream at the conclusion of the course. Over the years I’ve finally given up on all of these endeavors, in part due to time constraints, and in part because I have collectively sucked at all of them.

So now, in order to appease my “hobby need”, I scrapbook. I know, it’s such a sexy pastime. My husband is a fortunate man.

I’ve received some abuse for the scrapbooking over the years, mostly from people who’ve indicated I should at least have had my AARP card prior to starting down the road of laying down permanent memories. I’ve taken the ribbing with grace, and continued to annoy the hell out of my husband three or four times a year when I desecrate the dining room table with my papers, photos, sticky pads, and stamp dies (admit it, you’re impressed with my knowledge of the lingo). If I had to give myself a grade I’d say I’ve earned a B- overall (I tend to replicate the same layout repeatedly, as much due to laziness as a lack of creativity), but an A for effort. I enjoy this activity once I get into it, although every evening there is a bit of an internal struggle for me to forego the seductive appeal of my flatscreen and multiple opportunities to watch old Law and Order episodes.

Despite the allure of television I will continue to make permanent memories, in part because when I look at my photo albums now I often find myself peeling back the translucent covering in an attempt to remember why I felt it imperative I snap this moment in the first place. The nice thing about scrapbooking is you’re supposed to accompany your photo with a caption indicating why it was worth immortalizing at all, a verbal snapshot that in itself helps jog the medulla oblongata. My memory was on shaky ground with the first child, and sadly was permanently incapacitated after the birth of the second. This hobby affords me the opportunity to at least pretend I remembered what transpired on my oldest child’s third birthday, and that chance alone makes scrapbooking a worthwhile endeavor.

And then, of course, there’s its legacy for Justin.

There are many days when I won’t say I’m at peace with both of my children having autism, but I will say I have fully accepted the situation. We’ve achieved a certain tenuous calm, my sons and me, one in which I’d have to say while there are plenty of annoying situations that arise on a daily basis, the vast majority of the time we are happy. It is a hard-won position we hold, and one in which I am extremely proud. We’ve come through fire together, and somewhere along the way I’ve learned to integrate our daily struggles into the fabric of a family, acquired the necessary skills to shake off my forebodings for the future and attempt to live in the moment. At the very least, I try.

Most of the time I succeed, except when it comes to contemplating Justin’s lifetime care.

In Joan Dideon’s lyrical memoir “The Year of Magical Thinking” she writes about the death of her mother-in-law, some of whose last words to her children included “I can’t die- who will take care of you?”  Her offspring were in their sixties when these  words were uttered, fully capable individuals, parents of grown children themselves. Even on her deathbed, caught between the concrete world of the living and the ethereal world of the dead, she must have known they’d ultimately thrive without her presence, yet couldn’t quite conceive that this was possible without her.

I empathize.

It is so painful to me to envision my son, who will most certainly need constant supervision until the day his gracious heart stops beating, as an entity in this world alone, perhaps even for as long as I have already graced this earth. It is potentially the one concept I cannot reconcile with my need for acceptance, my desire to incorporate all aspects of his disability into the framework of our family’s life so that we can move on, enjoy one another as much as possible. On certain days I’ve envisioned a sort of autistic “Chavurah” as his fate. It is a lovely concept in the Jewish religion where a cohort, a family of sorts, is created, one in which they celebrate life’s triumphs together, and support one another through life’s inevitable sorrows. In my particular construct myself and other women of my generation comfort and check on the generation of children born before ours, the now motherless, the disenfranchised, the ones whose families are no longer there to protect them. In my fantasy world this turns into a “pay-it-forward” type of situation, in which the generation of mothers after me will later care for my own son in his group home when I am no longer able to play that role.

I can dream.

Ultimately I am a reality-based girl, and I am aware that creating a collective of women who will look after my son following my death is simply a wee bit unrealistic. Besides, bossy as I am, even I cannot wield that much influence beyond the grave.

So, I scrapbook.

I permit myself to imagine his imminent lodgings at times, mostly in an attempt to familiarize myself with the future so that it won’t seem quite so foreign when it ultimately arrives. In my imagination his room is strewn with photos, upright on mantles, bureaus, and desk. Smiling portraits adorn the walls, some of the celebrations long since concluded, some of simple, random moments which often end up being of equal importance. On his bookshelf, in a place of prominence, the diaries I have kept of his development and achievements will reside, nestled firmly next to the baby book in which I have yet to pen his first word. In my mind’s eye, he will be surrounded by proof of affection, a permanent record of commitment, of pride, of love.

The scrapbooks, however, will be what I hope will seal the deal. He enjoys perusing their contents now, and I often wonder how much he recalls of the recorded festivities on their colorful backgrounds, accompanied by stickers and buttons designed to enhance the page’s theme. I hope they will be a comfort to him down the road, but what I hope for most is that they will be viewed by individuals other than my son, that his caretakers will take the time to mark the passage of the middle-aged man before them, to acknowledge that he was once a teen-ager, a child, an infant. That he had, to some extent, a normal childhood. That he was adored by his family. That he was loved. That he is, indeed, a whole person.

And so, I scrapbook.