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

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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.

Follow me on Facebook at Autism Mommy-Therapist

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

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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.

Follow me on Facebook at Autism Mommy-Therapist

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.