May 23, 2016

Spinning

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 11:51 am by autismmommytherapist

Justin BD 2016 Scouts 003

My head is spinning.

I’d like to tell you it’s for a fun reason, like when I used to be able to stay out late in my glory days (I remember them fondly). To tell you the truth my brain is literally pulsing with information, ideas, and choices.

If I’m honest, it’s mostly the choices throwing me for a loop.

I just finished reading Susan Senator’s “Autism Adulthood,” and while I’m contemplating the enormous amount of information within her tome (so much of it positive I’m happy to say), I’m also coming to terms with the fact that next week I’m the mother of a teenager.

Of course, that’s a sobering thought all by itself. Couple that with being the mom of a severely disabled teenager who will need lifetime care, and my chocolate stash is far from being safe.

Justin’s adulthood is creeping up on me, and believe it or not I feel blindsided as just yesterday we were conquering sleep issues and potty training, and it seems incomprehensible to me that he’s almost thirteen. Yes, he’s got eight more years of school before he’s in the real world, and officially “transition” and all it encompasses doesn’t start until he’s twenty-one, but his adult life is coming.

Like winter, it’s coming.

I would love to tell you I have a plan, although to be honest, my motherhood plans have more often than not deferred to “plan B” over the past decade. It’s not as if my husband and I haven’t been faced with big choices since our eldest’s diagnosis. One of our first dilemmas involved breaking into our savings to shell out four figures a month for our son’s ABA program which wasn’t covered at the time in Virginia, a decision we continue to be grateful we made. When we were faced with the fact that our school district’s autism program was good but would never provide him the one-on-one aide we felt he desperately needed for his academics, we made the decision to leave DC and relocate to Jersey which we’ve never regretted either (although we still miss our nation’s capitol to this day.)

We’ve known when to fire therapists, and when to try to keep people in our retinue at all costs. There’ve been med choices and school choices and “do we try this therapy even though it’s not covered” choices (oh my!), but I have to say most of the time Jeff and I knew what to do. Very rarely have we looked back and wished we’d taken the road less traveled.

And yet when it comes to Justin’s living/day-time arrangements post-21, I am literally in a quandary that even dark chocolate doesn’t seem to help.

I will preface what I’m about to say with the fact that eight years out I certainly don’t know what my options will be, and since the adult autism landscape seems to improve at least a bit every year I’m hopeful I will actually have choices in 2024, but we’ll see. Again, even my best-laid plans won’t come to fruition if there aren’t good programs and residential services, and equally importantly, openings.

But even if I one day have a smorgasbord of options (yes, I relate everything to food) at least at this point I’m just not sure what will be best for our son, and what’s best for us.

I’ve had the good fortune over the last few years to watch friends and acquaintances create post-twenty-one lives for their adult children, and I’ve seen all different scenarios come to life. One family I know has kept both their children home and have all-day care almost seven days a week, which enables my friend to work and have a modicum of freedom in her life. I’ve seen another friend place their child in a residential setting where he is finishing his schooling and absolutely thriving after having made a wonderful transition, seeing his parents frequently and seemingly loving his life.

One thing I’ve learned for sure with autism- it’s important to keep your mind open.

I know there will be immeasurable growth with Justin over the next eight years. He is a completely different child than he was at five, spends most of his days joyful, is very close to my husband and me. Honestly, except for his OCD moments and his frequent desire to not stay anywhere outside of our home for more than fifty-three minutes he is delightful. As the years have passed we’ve watched our lives grow easier, our ability to make our own choices grow, and his happiness with his life increase.

Amen to that.

And maybe I should table all this contemplation for a few years, but it’s not in my nature to do so, so here I am. If I’m really honest it’s the decades he’s here without me that are the most painful, and in truth I’ve shelved thinking about them in part because they’re not here yet, and in part because they haven’t invented that damn aging pill yet that lets me get to 110 with all (or most) of my faculties.

Here’s hoping.

So most of the time I choose to focus on the years I’ll still be here, guiding his life, hopefully providing a plan for him where he is as happy as he is now with school and living with us.

And here’s where I get stuck, because I’m not sure if what’s best for Justin is what’s best for us.

Jeff and I are both fiercely independent people. Honestly, one of the hardest parts of parenting for us was not the sleep deprivation (although that sucked too) but the loss of freedom one eight pounds of glory bundle presented us with thirteen years ago. When I think of retirement I imagine travel, and having those stay-in-bed days I lived for back in my youth. I can’t imagine worrying if my babysitter will bail when I want to go see colleges with my younger son, or go to my niece’s wedding.

I can’t imagine one day just not being able to do whatever the hell I want again. I really liked those days.

But as I think of this scenario I look at my boy, and I know people will say I shouldn’t speak for him, but I can’t ask him this, so I just have to guess. I know in my heart he’d want to stay with us forever, would be perfectly happy to go to his school until he was an octogenarian, loves the routine he craves that we’ve provided for him. He will not be a fan of day programs, and since Great Adventure isn’t open every day of the year I see long stretches of “sameness,” of a lack of stimulation and a lack of just something to damn do that I can’t figure out how I’ll provide for him.

Just in case you think we don’t think out of the box we’ve contemplated Hawaii which supposedly has fabulous adult services. Justin could spend his forty-three minutes at the beach and ride his horses daily, and Jeff and I could live in paradise.

I figure we’d be very popular with friends and family.

The truth is I just don’t know what’s best for all of us. I struggle, because I know that by potentially putting him in different settings the people who care for him won’t always know what he needs the way his mom and dad do, but I also know he will have to deal with that eventuality someday.

So when is it best to start?

Will I know what to do?

Will my expectations and hopes match my options?

Will Justin approve?

Wherever he is, will he be loved at least a little?

And as I pop that last allotted chocolate into my mouth, my head is still spinning.

 

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February 22, 2016

Never Give Up

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 2:20 pm by autismmommytherapist

Summer 15 051

Recently I posted a piece in my various venues talking about what I’d learned about autism in the almost twelve years since Justin’s diagnosis. There were the usual variety of comments, some positive, some definitely less receptive (to put it mildly,) and although I usually don’t respond to criticism with a “rebuttal post,” this one has been ruminating for a while.

So here it comes people.

In the piece I wrote mostly about acceptance, of coming to grips with what severe autism means for my eldest son’s life trajectory. One of the things I wrote was the following: “You will learn that you’ll always worry about what will happen to them after you die. You will learn to live with it.”

I stand by those words. I have learned that I will always hate the fact I can’t be with him, loving him, protecting him, and caring for him until his death. If I could change that and still give him a normal lifespan, I would in a second. The thought of someone potentially hurting my boy is horrifying, an ache in my heart that never goes away.

But I have learned not to let it paralyze me as it often did in his early years, when I tried so desperately to alleviate the severity of his autism so he would live an independent life. All of our therapeutic interventions did not change the fact that he will need constant care for his entire lifespan. I’ve learned to shelve that fear so that it is not always in sharp focus, so I can be present in my life and be the mother I need to be for both my autistic boys.

I’ve accepted his need for lifetime care. I will never embrace it.

There are always challenges in our daily life with Justin. His OCD can be daunting, and sometimes he still has aggressive outbursts. It’s not all lollipops and rainbows chez McCafferty.

But the last few years have been so much better than his earlier ones that I’m often inspired to write about his progress. I’ve been told by readers that I’m naïve, to wait until puberty hits, and wished good luck with the “post-21 abyss.”

And maybe they’re right. I say this without “snark”- perhaps when puberty hits it will all go to hell in a handbasket, and my primarily sweet, smart, happy tween will become unidentifiable from the boy we’ve raised in the last few years. Maybe he will turn twenty-one and there will be no good group home placement for him, no quality “day care,” no money for home respite care. Perhaps I will be yelling at my husband to stop working so he can watch our thirty-two-year-old son so I can get my mammogram. Maybe everything will suck.

Or, maybe not.

Maybe Justin will have options like my friends’ adult children have had in the past few years. One child is thriving in a group home, in better shape and the happiest he’s been his whole life. A grown son of my friend goes to a daycare center he calls “college” and loves it, and lives peacefully at home. Another friend of mine with two adult children with severe autism (yes, she is awesome) has brokered a deal where her two kids get respite care six and seven days a week respectively, are engaged in outings and activities they enjoy, and love their lives.

And just for the record, the last two examples are of autistic adults living large in Jersey.

Perhaps some of you are thinking, “sure Kim, that’s great for them, but your kid’s in the approaching autism bubble and you won’t have those pretty choices in eight years.”

And despite all the autism initiatives I read about daily, that might be my son’s fate. It’s too early to tell.

But even if I am harassing my husband in eight years I will never regret writing about or living these last few years, will never feel I was wrong about encouraging others to have hope. Five years ago we were dealing with daily insomnia, toilet training disasters, refusals to eat, daily aggression, and a host of other incredibly challenging issues that affected not just Justin, but our entire family. I wish I could have known then how much easier life would get.

I wish I would have believed in even the possibility that life would get easier. I would have been a much happier person.

I write for several reasons, and to be perfectly honest with you I write for myself as much as I write for my readers. My computer is a wonderful place for me to vent, said venting keeping me from consuming two pounds of chocolate daily.

Yup, I need my blog for my physical as well as my mental health.

But I also write for others, in an attempt to pay it forward to other parents, particularly those in the early years of diagnosis who may be feeling bereft of hope. You see, twelve years ago I walked into Barnes and Noble after having dropped off my two-year-old son in his pre-school program, purchased a hot chocolate, and settled into the special needs section. At that point I had read several memoirs about autistic kids, all having the outcome of moving to the mild end of the spectrum or losing their diagnoses altogether. I stumbled upon Susan Senator’s “Making Peace with Autism” and devoured it, let my hot chocolate grow cold. It was the first book I’d read where a moderate to severely autistic child had made progress but remained on that end of the spectrum, the first tome I’d perused where the family and child were happy despite the severity and the challenges autism presented to them.

It was the first book that gave me hope that someday my family might be happy too even if my child remained severely affected.

I’m certainly not comparing myself with the amazing Susan Senator, who remains my “autism parent/writer rock star.” However, I know my missives have helped others, and I’m going to keep at it. I never want to walk around hollowed out with the fear and rage I felt in the early years. My goal is to be as happy as I can, to have my boys be as happy as they can be too, and to share their successes with all of you.

I will never give up pursuing safe, productive, and happy lives for them both.

I will never give up.

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October 14, 2015

The Calm After the Storm

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 1:22 pm by autismmommytherapist

disney 33

This past Sunday I had the good fortune to hear our pastor deliver a sermon entitled “Be Calm,” which frankly should be my mantra as I navigate the autism world with my two sons. I sat up a little straighter in my pew to take in his words, receptive as always (although perhaps not in practice) to any suggestions that will help reduce my sometimes chaotic life.

He related to us a story of how he had traveled to north-western Kenya several decades ago to visit a mission, and shared with us one of the most terrifying moments of his life. He was visiting his brother-in-law who had befriended an African there, one who greatly desired to show both men his treasured family farm, sixty kilometers and an extremely bumpy ride away from where they were staying. This was a remote place in Kenya, and for point of reference the sixty kilometer drive was more than four hours in the opposite direction of the nearest phone.

After a ride through the jungle that only a native of the land could navigate the three men finally stopped, and their guide explained to them that it would now be another hike up a steep mountain to actually reach the family farm.

Our pastor, reeling from jet lag, time changes, and the relentless heat declined to make the final journey, encouraging his brother-in-law and his friend to go on without him. They did, at which point our pastor was left with a locked van and no idea when his companions would return. He felt completely isolated.

Isolated, but not alone.

Within minutes native Africans had appeared on the scene, and began gesturing and pointing at our reverend. After discovering that the van was locked (and contemplating why his brother-in-law locked a van when they were more than four hours from any type of civilization) he put his head in his hands, and the thought came unbidden into his mind that he might not make it out of there.

As he said, he was far from the familiar. Out of solutions. Out of ideas. Out of energy.

Out of hope.

Quite honestly in my autism journey with my boys I have felt all of those things, and I didn’t even have to leave the country.

Our pastor went on to describe how this experience lent itself to increasing his empathy toward other peoples’ obstacles, explaining that to him life appears a jungle at times. He described dense thickets of broken hearts, and empty wallets, both of which we have endured with our two sons. He invoked forests framed by hospital visits, and I couldn’t help but think of the dozens of doctor visits we’ve had in four different states over the last eleven years.

Although our minister pointed out that we don’t generally encounter the sounds of wild animals in our daily lives, I thought about how autism families often endure the complaints of other people when they brave the public with their autistic children, how our outings are sometimes devoid of compassion from others. He discussed how our creditors are our predators, and I thought back to the thousands we spent monthly many moons ago on our eldest’s home program when we resided in a state that offered us at most two hours a week of therapy to address the core deficits of Justin’s disorder.

I thought of other predators who steal our calm too. Our sons’ collective struggles with sleep. Their digestive issues and food aversions. The inexorable toll of my eldest’s need for ritual. The aggression that can rear its ugly head for no fathomable reason.

And worst of all, the predators who stole their happiness at times and left only suffering in their wake.

The sermon continued with the congregation being asked to imagine what it would be like to be rescued, to be safe, to have hope restored once again. Our minister encouraged us to search for that person with both vision and the direction to lead the way out.

And I will share with you now that back in the early days of our family’s struggles with autism I felt that loss of hope.

Instead of one person however, it took a village to lift me out.

Both boys’ diagnoses hit us hard, in completely different ways. Our eldest son Justin’s came about at seventeen months, after almost a year of noticing major differences in his development. At the time we lived in Virginia and had no family nearby, and the extent of my experiences with autism had been two former students who were only with me for homeroom. My husband Jeff and I didn’t know any other parents with autistic children, and in 2004 there weren’t a plethora of books written by parents on the subject (although there were a myriad of depressing websites.) Things were a little easier when our second son regressed from typical development at eighteen months as we were already relocated nearer to family and adequate Early Intervention services, but even then Jeff and I felt isolated, overwhelmed and alone.

But slowly, each time, we pulled ourselves out of that dark place. We asked for more help from family. We asked for more help from friends. I joined a support group. I made invaluable friendships with other autism moms who were going through similar trials, and made friends with those with older children who could advise me and lead the way. I read Susan Senator’s book “Making Peace with Autism,” which was the first account I’d found of a family whose child never shed their autism diagnosis but had managed to reach a place of peace.

I began once again to take care of myself, to address my needs.

Our minister mentioned that most of us never leave the jungle. He said that the dense brush of issues never changes- instead, we must change.

And I’ve found this last statement to be true. Our pastor said that when we are rescued (and I believe profoundly that we must also rescue ourselves,) that our loneliness diminishes, our despair decreases, and our confusion lifts. I have created a posse of people who lift me out when times are tough, but in the end it’s up to me how I look at my life, at both the limitations and gifts autism has bestowed upon my boys, and our family.

I found my calm.

And for any of you reading this who are just starting to navigate autism’s pathways, or have been in this for years and are in a place seemingly devoid of hope, please, find your person. Find your posse. Find your peace.

Do whatever it takes to find your calm.


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May 8, 2012

Spring Awakening

Posted in My Take on Autism tagged , , , , , at 1:49 pm by autismmommytherapist

It’s finally “real spring”, which for me entails a prodigious amount of pollen, sunshine, and enough temperate weather to get my kids out of the house, but doesn’t necessarily coincide with the official onset of our fairest season. “Putting away winter” as my youngest son would say has taken on a far more profound meaning this year than most, as our family has just experienced a four-month detour into “siege mode” with our eldest autistic son, a phrase coined so aptly by Susan Senator some years back.

In truth, less than three weeks ago, I was on the phone asking my son’s teacher if his increased aggressive behavior was putting him in jeopardy of losing his spot at his private autism school. Four months, seventy-two hours, and two major medication changes later, I began to see glimpses of the son I knew last fall. That is to say I gratefully saw the return of the child who is known at his educational placement for his generally happy demeanor, and predominantly good behavior as well. I began to witness glimpses of the boy one who rushes up to me at least a dozen times a day and bestows a kiss on my forehead for no reason whatsoever. He’s slowly, but decidedly, coming back to us.

And trust me, I am first to wish a fond farewell to this winter of our family’s discontent.

I have discovered with Justin that his more severe autism “symptoms” seem to be cyclical, that every few years or so we see a regression of sorts, usually preceded by an illness. It’s not just the loss of skills that’s so distressing. It’s also the loss of the peaceful nature he and his teachers, parents, and therapists have worked so diligently for him to acquire.

The absence of his hard-won joy frankly worries me just as much as the troubling dearth of sound that so recently emanated from his throat during speech sessions, the “mmm” and “bbb” sounds that had made a sporadic resurgence over the past year. Thankfully, during these difficult periods, skills other than the ability to conjure consonants and vowels seem to retain their stronghold in his brain, so all of us who work with Justin are not witness to the unraveling of all of our hard work, and of course, mostly his efforts and determination.

And for that, I am eternally grateful.

In general I am a “suck it up” type of girl, a fact which I attribute far more to an ornery genetic inheritance than any calculated fortitude on my part. I’ve found in times of crisis that forging forward with a plan (or several) has been more cathartic to me than talking out my woes, and I’ve often turned solely to my husband, or inward to myself, for solace during the most draining periods we’ve experienced with both boys’ bouts with autism. I’m not certain this is the healthiest path to take, but this method has always enabled me to simultaneously process what’s happening to my family, and blaze a trail through it to secure solutions.

At least, this process worked until this past winter.

This year Justin’s suffering hit me especially hard, truly knocked the wind out of me. Perhaps the depth of my despair was fortified by the stress (and maybe sheer idiocy) of simultaneously directing, producing, and acting in my own play, an endeavor I took on willingly despite any theater experience whatsoever (truly, my kindergarten Christmas pageant was the last time I dabbled within that realm). Maybe it was the fact I hadn’t seen him rendered this miserable since he was a toddler, and couldn’t bear the thought of the return of such an angst-ridden child in a now far larger, and far stronger, body. My malaise could have been triggered because I’m always afraid he won’t transcend these cycles, will be unable to regain the positive nature which resides at the core of his soul.

Or, perhaps I’m just getting old.

Whatever the reason or reasons, I didn’t rebound as I have in the past. My sleep patterns suffered, which for me is catastrophic, as unfortunately I’m one of those boring people who actually requires steady slumber. I became forgetful, finding myself writing things down more than usual, then not remembering I had done so. I lost the joy I’ve relied upon all these years to suck me back into the daily world no matter what is transpiring in our house.

Fortunately, I realized what was happening, and I sought help. I’m talking to a therapist now, and I find that the ability just to share what’s going on in my life for a solid hour is almost as cathartic as writing. I’ve dabbled in the social world again, making plans with friends I’ve put off for a season. I even purchased a hot stone treatment for myself as a birthday gift, and have discovered I am a convert to steaming rocks, ruined for life for more mundane massage. I carved out time, and took care of myself.

And in turn, I was able to take care of Justin, fully, completely, and with all the skills and resources at my disposal.

Parenting is one of the most difficult jobs in the world. Being a parent to a special needs child just ramps up the difficulty quotient immeasurably, can at times seem to be a Herculean task with no end. I cannot emphasize enough how important it is for us to care for ourselves, to tend to our needs even when that task seems nearly impossible. I just read a fabulous post about this subject on Outrunning the Storm. It prompted me to write this piece, and take a look at this year and how I can do things differently, and better, in the future. There is no doubt in my mind that we’ll go through periods like this again. I need to be prepared. There’s so much at stake.

And it’s not only Justin’s happiness that matters. I have to remember my own does as well.

So if you’ve found yourself in “siege mode”, or semi-siege mode, or are just having a difficult period with your child no matter what his or her issues, don’t forget to attend to your needs, as often and as soon as you can. You require that care. You deserve it as well.

And believe me, it’s for your kids too.

October 23, 2011

Warriors, Tigers, and Dragons

Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged , , , , , , , , , , , , , at 12:09 pm by autismmommytherapist

It seems we’ve come to a place in our society where moms require labels to distinguish what kind of parenting we practice. Several years ago I read an article describing how Jenny McCarthy aptly coined the phrase “warrior moms”, a term dedicated to those of us fiercely advocating and fighting for our children with autism. This past year in Time Magazine the zeitgeist shifted to “tiger moms”, an appellation I grasp intellectually, but continue to reject solely on my belief that childhood should include choices, and at times actually be fun. Then last night, as I briefly skimmed through the daily Autism Speaks blog, I chanced upon a reference to a New York Times opinion piece called “Notes from a Dragon Mom”. Without reading the blurb I rolled my eyes and clicked on the link, ready to be regaled with yet another story of a superhuman mother which would surely leave me feeling vaguely guilty for all the things, despite my efforts, I somehow manage not to accomplish for my progeny.

Ten minutes and half a box of Kleenex later, I sent a silent plea to the universe to forgive me for that eye roll.

The piece, by author Emily Napp, describes in exquisite, precise prose how her eighteen-month-old son Ronan, a beautiful little boy with red hair kissed by fire, will not live to see his third birthday. I won’t give you the details here, because Ms. Napp does so brilliantly, with an elegant grace I cannot and should not attempt to reprise. I promise you however, this article is worth your time, and will perhaps alter your perspective on parenting irrevocably.

I know it did for me.

For years after both of my boys were deemed autistic, I was mostly immersed in the physicality of their diagnoses. My husband and I were completely caught up in dealing with sleepless nights, relentless rounds of diarrhea, eating aversions, and with my eldest, the feint and par of aggression. There wasn’t much time to consider the future, as the two of us at times were literally simply trying to make it through the hour. Quite frankly there was a safety to living in the moment, no matter how terrible it was. Having been a veteran educator myself I’d had access to several autistic students over the years, and had been privileged to know and follow their families over time. I had an extremely clear big picture view of what might transpire for my boys down the road, and the prospects were terrifying. I simply shelved those thoughts for the years immediately following what I like to call their “D Days”, and forced myself to focus on the now.

I believe making that shift saved my sanity.

There were times however, particularly during Justin’s pre-school years, that as our daily struggles lessoned, the weight of that possible future would insidiously slip its way back into my head, at times leaving me semi-paralyzed with fear. I realized ironically that as Justin’s challenging behavior lessoned, I would have to ramp up my own self-discipline, try to conquer my own fears, and stop living in my head. I’ve mentioned before in my blog that one of the most helpful tools I used to do so was Susan Senator’s book Making Peace with Autism. Her writing, despite our child’s moderate autism, afforded me both a blueprint for one day achieving a happy family, as well as a second important mental shift.

I clearly remember one fall morning in Barnes and Noble, snatching up this book from amongst a myriad of tomes that outlined the full recovery of the author’s child, and finding immediate comfort from the words within the cover. The solace came not from discovering a family who made every decision regarding their child’s care with consummate perfection. It came from reading about a family who learned to self-correct their errors, who made enough of the right choices despite their son’s severe autism to forge a path which would ultimately make possible what I consider the perfect endgame- a safe place to live, a social outlet, a job, and a happy life.

This remains my intended endgame for Justin as well.

Life continues to improve in our home, with my eldest making great strides in reading, communicating his needs, and finally being able to summon that peaceful child I knew existed, and worked so diligently to unearth, during all the dark years. Despite my second’s son’s identical diagnosis, Zachary’s life trajectory remains quite different than Justin’s, most likely including the more traditional fare of relationships, college, career, and independent living. Over time I’ve been able to reconcile the fact that Justin won’t have these options, mostly because he’s achieved the most important goal I’ve always had for both of my kids.

Both Justin and Zach love their lives.

As we’ve reached this point together as a family I’ve realized I won’t ever completely be at peace with the paths autism has altered for us, but the truth is I am completely at peace with that realization. There is one fear however that has lingered for me, the one that requires a serious “aha” moment, or one last emotional transition. I have yet to figure out how to deal with those decades I won’t be around to protect my boy, although if it were possible from beyond the grave, I surely would. Part of my problem is projection, or the very real fear of all that can go wrong when I’m gone.

Every year since Justin’s diagnosis I’ve come across a heartbreaking story of an adult with autism’s neglect, injury, or untimely death. These stories simply exacerbate my deepest fears, heighten the atmosphere of “what happened now”, in which my family dwelled for so long. The possibility of someone hurting the someday adult who will always remain my baby clouded the future, prevented me from seeing an alternative route. Yet the truth is, Justin may live safely for the forty years he’ll spend on earth without me. He may in fact acquire that job that suits him perfectly, enjoy authentic social opportunities, truly revel in his life. There’s every chance he may be just fine. The reality is, he’s lucky to have a future.

And last night, in devastating detail, Ms. Napp reminded me of that simple truth.

I admit, I feel somewhat guilty gleaning clarity from this piece, seeing how this author must surely dwell, despite the sweetness of living in the now, within the confines of constant, unremitting pain. Her words certainly have not completely eradicated my deepest worries concerning Justin’s existence post-parent, but they’ve given me a different way of contemplating the arc of his life. For that gift, I am eternally grateful.

I am confident I will never have the honor of meeting Ms. Napp to physically thank her for sharing her story. The most I can do is share the piece here. As the author states near the conclusion of the article, the truth for all of us raising the next generation is that “none of it is forever”. I thank Ms. Napp for altering my perspective. And I know, as I hug my boys who have already lived longer than her son probably ever will, I won’t forget this truth any time soon.

July 22, 2010

Guest Blogger Thursday

Posted in Fun Stuff tagged , at 6:24 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 Susan Senator, and I am truly honored she allowed me to share her writing on my own blog. A few months after Justin was diagnosed I began reading narratives of other families’ journeys with autism (at this point I considered memoirs a break from the internet and a welcome escape), and Susan’s debut book was one of the many I chose to read. What made it invaluable to me was that it was the first I could find that related the story of an unrecovered child, and demonstrated a way of life that permitted me to hope that even if Justin didn’t end up in that small cadre of fortunate children, I could still retain my dreams of having a happy family. I am forever grateful for that early insight.

I chose this particular piece because in many respects, I feel my greatest remaining challenge in my daily dealings with autism revolves around my own perspective on it, my need to escape my own head. I am certain my readers will enjoy her writing. Thank you, Susan!

http://www.susansenator.com/

Thursday, April 29, 2010

Getting Out of My Own Way

I was very surprised at how much I enjoyed the afterschool class I teach — little girls’ Middle Eastern dance (aka Baby Bellies). I have not taught BB all year — I got burned out last year — and so I have not been in my stride. Today was the second class. And I was totally dreading it. I looked at the bag of bright colored jingling shmatahs, and I thought, “why did I sign up for this?”  I was remembering class at its very worst, when there were about 8 screaming 8 year-olds, running with my veils dragging, and all kinds of school people (kids, teachers, specialists) looking at us to figure out what the heck we were doing. And there I would be, with my hip scarf tied around my jeans and my boots off, trying to teach these girls a few bellydance moves while trying not to perspire too much. Good luck with that, as Jerry Seinfeld would say.

The problem with me is, sometimes I get in my own way by thinking I know what something is going to be like beforehand, and then getting sick of it before it even happens!

To be honest, there are some Fridays where I think, “Argh!  I almost forgot, Nat’s coming home for the weekend.”  And, please God forgive me, my spirits plummet. I immediately think of how I’m afraid it’s going to be, namely that I will be trapped in the house a lot unless I want to take him out with me. So I make the mistake of feeling like I know what it’s going to be like (living with Nat the way it is at its worst) before the guy even steps off the bus.

There were so many times in his younger life when Nat was so difficult my life felt like a prison. I am so sorry to say that, and I’ve said it before for sure, but it is the truth and that is that. It makes me sad to think that I have felt this way about my son, whom I love probably more than I love myself. But loving someone and living easily with someone are two different things. There was the bloody wrestling to the ground outside of the Stop & Shop. There was the horrible struggle in the subway, holding onto Baby Benji while fending off Nat. There was the clawing of Max’s hand at the Bertucci’s. The screaming, screaming, screaming. The inexplicable screaming at the end of George of the Jungle (probably warranted, when you think about it). The attack while I was driving. The pouring of water in the handbag, the pushing over of little kids at the playground. These things die hard in the memory. It is very unfair to him. That stuff, after all, is the disability. Or, more accurately, the co-morbid conditions that frequently accompany autism. There is no wheelchair, there is no cane, no feeding tube, no weak heart. There is the sudden, scary snap. Intermittent Reinforcement, a most powerful psychological dynamic. Rats.

He’s not like that now. Now there is this fast-moving young man, very content to be himself, anywhere, with anyone. He is game for anything:  a trip to the mall, Home Depot, a restaurant, a bookstore. He will try on shoes, try new foods. He will sit and read his social group schedule over and over again, and leap up off the couch when I say, “Okay, it’s time to go, Nat.”  He loves visiting people, loves parties, I could go on and on (especially since this is my blog, and not a newspaper or editor I’m writing for). So what, then, is my excuse?  Get over it, right?

There is, however, my low-grade anxiety that is always with me, like a small, invincible infection:  the worry that somehow, what he does with his time is not good enough. And it is that feeling that I dread on a Friday afternoon. I have pinpointed it as of today, right now. The feeling, the fear, that I am allowing a mediocre existence for my son.

Which is interesting, because that was exactly what made me dread Baby Bellies. For the longest time I felt like I wasn’t very good at teaching because I could not reign them in. I could not get them to systematically learn the moves. I couldn’t get them to pay attention long enough, before they starting pleading for the snack I always bring. I have a memory for the bad stuff, that’s for sure. The long hour of getting pissed off, of hearing my amazing Arabic music, and having no one really listening. Of not knowing what level to teach, what to expect.

Sometime recently, it gelled, however. I realized that I could sit down, pick music at my leisure, and be there for them — let them come over to show me stuff and to ask questions. When I feel so moved, I stand up and start doing the Basic Egyptian (walking with a hip lift, trading off sides), or some zilling (playing finger cymbals). Every now and then a pair of girls will have a duet they made up. Today S and J invented “the tunnel spin,” which is the two of them facing each other with two veils draped over their heads, covering them both, and then they spin apart. The other girls wanted to learn it. Then E starts in with her move, “which is kind of like jumping rope with a veil.”  “Just be careful not to trip,” I say. Off in the background, always always where she is not supposed to be — by the desks piled up in the corner — is K, saying, “Pretend I’m…”  or “Pretend you’re…”  Those were my exact words when I was her age. And I thought, how I would have loved a class like this, with a mellow teacher who never yelled, never shamed anyone, encouraged, taught you when you wanted to learn, and brought in all kinds of dress-up materials. Weird music, but nothing’s perfect.

So I ended up having the best afternoon with the Baby Bellies, staying way beyond the scheduled hour, so they could show their moms what they had learned. R does quite a decent hip-bump sideways walk with double veil (something I don’t think even Petite Jamilla does). K is just in her own world, wrapped in her turquoise like a blue mummy. I just sit and soak it in, a happy sweet-filled sponge. And so, I’m going to go into sponge mode tomorrow when that van honks.