February 13, 2017
It came home in your folder today, the flyer with the fun graphics from your even more fun teacher touting “100 Day,” where you are supposed to dress up like a centenarian. Within minutes I am rifling through your closet for a button down shirt and a tie, combing your dad’s closet for a suitable hat. You approve your future garb and I put it aside for the next week, moving on to more important tasks like feeding my always-hungry boys, one mildly autistic and one not-so-much, and for a time, the celebration is forgotten.
Later, as I’m washing my hundredth dish that day, I do the small amount of mental math I’m still capable of doing. Living to one hundred gets you to 2107. Realistically, at that point I will have been gone for more than half your life.
As I think of how much you still like to snuggle with me it seems impossible that there will come a day I will no longer be with you.
My goal is to remain alive and cognizant until you’re fifty, a goal which I try to attain by regular check-ups, exercise, and (sort of) limiting that wine intake. My mind stretches out over the next four decades of your life- I hope there is a lovely wife, at least a few of the five kids you’re planning on (remember hon, they’re expensive), friends, a career and independence. If I blur the edges a little I can envision you as a husband, a father, a grandfather. I think how much your boundless enthusiasm for life and your eclectic interests will make you an interesting dad and grandad, how I hope these children I may meet when even walking is a challenge will appreciate you.
I know I do.
Of course, I can’t help but let my mind wander to your older brother being a hundred, and since at least on my side of the family our relatives live a ridiculously long time, that goal may be attainable. I’m hoping to make it to fifty with him too, see him settled in a good group home near his sibling, enrolled in a day program he loves, somehow able to get to those therapeutic horseback riding lessons he adores. I envision there will be frequent visits from his mom and dad (if we can still drive), and that in his own way he will one day be independent of me, although never independent of others.
And that’s where the anxiety creeps back in. I just can’t envision getting him from fifty to death without me.
I’ve written before about him making it to eighty and me to a hundred and sixteen, holding hands as he takes his last breath and I follow along behind him. Rationally I know this won’t happen (even giving up more wine doesn’t make that attainable), but God, I wish it was.
I brought him into this world, and with his need for constant care, I wish I could see him out.
I’m hopeful he’ll have his little brother to look in on him, but I know he’ll be busy with those five kids. They do have a bond between them but I can’t say they’re close anymore. When they were both little we could engage them in games together, but as Zach shed rolling balls back and forth for Star Wars trivia the gap widened, only to be truly breached at bedtime with our communal songs. I am certain my youngest will one day be busy with the trappings of a more “normal” life, may not even live near his brother.
It breaks my heart to think that one day you will be surrounded by people who may like you, but don’t love you.
Even as I pen these words I know for me they’re hypocritical. Although I’m a stay-at-home mom I’ve always been the first to tell friends that day care is not the devil, that there was no difference in the emotional stability of the three hundred kids I taught who’d had outside care or had been home with a parent. Kids need love yes, but maybe they don’t need to be enmeshed in love every single second of their day. Justin will be an adult when he enters a home, will have had decades of love and hugs by the time he moves out. Intellectually, I believe he will be okay.
But this quest for hundred year old garb has made me wonder about his future.
Who will take him to the successors of his fancy neurologist to make sure his meds are right?
Who will remember to spend extra care flossing that gap between the two teeth on the left hand side of his mouth?
Who will schedule (and dear God, do the prep work) for his colonoscopy?
Who will cuddle with my seventy-five-year-old and read him an Eric Carle book (I can guarantee he’ll still want that).
Other than his brother, who will love him?
How do I exit from his life? Do I spend every last possible minute with him, or fade out slowly as it becomes apparent that my time is drawing near?
Hell, will I even have a choice?
When I’m gone, will he miss me, or will the differences in his brain allow a quick fade of attachment?
Yup, being selfless for a moment here, I’m hoping for the latter.
Things have improved lately chez McCafferty. After a long bout with extreme OCD my son’s obsessions seem to have been quelled somewhat, giving us a more “typical” life at home, for which my husband and I are extremely grateful. My youngest is thriving.
We are a happy family. I am happy.
But I share with you that for any family looking toward the future with a severely disabled child, there is always that unknown of what’s to come lurking there, obdurate in its tenacity. Even on a good day, and there are many, my concerns for his future are always with me. On most days I’ve shelved this worry for my sanity, but I know it will always be there. It is perhaps the one thing I am certain of with this life.
And if I make it to one hundred and I still know who I am, I’ll carry it with me too.
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June 9, 2015
A month or so ago I posted a piece on the Autism Speaks website for Mother’s Day entitled “Ten Things I’ve Learned as an Autism Mom.” The piece got a great response, with many people commenting that the fourth item on my list truly hit home. It reads as follows: “You will worry about what happens to them when you’re gone. This one you will never conquer.”
All I can say is, truth.
This next statement may surprise or anger some of my readers, but it’s my truth too. I wouldn’t change that my kids have autism. I believe at least in our case the reasons are genetic, since all of my kids have the disorder. I believe it’s a fundamental part of who they are. I’m not sure I have the right to change it.
But if I could somehow alter the severity of my eldest son’s disorder, I would.
My youngest son Zach, who is high-functioning, has mild challenges with sleep and anxiety, and moderate challenges with focus and impulsivity. I currently feel (and ask me this again down the road) that the gifts of his autism mitigate the challenges- his ability to read at three, that fact that he remembers everything, his insatiable curiosity, and his hyper-focus when fascinated by a subject. Zach has learned to embrace his differences, at present feels good about them. We focus on the positive aspects of his autism here, and so far, so good.
With Justin however, his type of autism precludes him from living an independent life. And I know I will go to my grave wishing things were different.
Over the past eleven years since Justin was diagnosed I’ve done a lot of soul-searching. When he first received the “a” label I was set on total “recovery” for him, wished for college, love, friends and a career for my boy. I wanted nothing less than an eradication of his disorder. When it quickly became clear this was not in the cards for us I shifted gears and strove for him to be at least independent, able to take care of himself after his father and I are gone.
It’s clear now that wish won’t be granted either.
Still, as time has passed I’ve come to see that Justin is happy as he is, is often the happiest person in our house. I don’t believe he wants the aforementioned things in his life- I am confident he does not know what they are. I’ve accepted he won’t have all of my pretty life options.
I’ve also accepted he doesn’t need them to be happy.
What I haven’t accepted is that the severity of his disability renders him unable to care for himself, which puts him at risk for up to forty years after his father and I are dead. This truth remains, and will always be, unacceptable to me.
In fact, it haunts me.
I shelve these thoughts most days for my sanity. The worries are always there, just looming below the surface, ready to rear their ugly heads when I least expect them. If someone were to hand me a pill that would lesson his symptoms and enable him to take care of himself one day, I’d be first in line at my pharmacy.
And I run fast.
I know some readers will think I’m horrible for wanted to change him in any way. But of my three wishes for him, namely that he spends his eighty years on earth happy, productive, and safe, the last wish trumps all.
I don’t believe even with the few medical advances that autism research has brought about that I’ll ever have the option of lessening his autism. The truth is if I want a modicum of happiness for myself, I’ll have to focus on what we have now- a happy, bright, loving child who at this moment in time is wondrously safe.
I will continue to have to learn to live with that much.
But some days, many days, it’s simply not enough.
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August 28, 2013
I realize how patently absurd this statement is, although I have multiple family members who have lived obscenely long lives, and I’m hoping to take after them. Truth be told it’s a fantasy wish, one I ponder often as I contemplate having that extra roll at dinner, or that second glass of wine. I’m at least shooting for triple digits, exercising (fairly) frequently, taking my vitamin C (when I remember), and mostly eating a healthy diet. It’s something I feel very strongly about, because the stakes are so high.
You see, I can never die, because my eldest son Justin, who has severe autism, will always need me.
If I’m being completely honest with myself, he may want to dispute that fact forty years from now. Since nobody can completely predict the trajectory of his progress, it’s entirely possible he may one day live in a residential setting where he has gainful employment, good relationships with his caregivers, frequent and enjoyable outings, and no desire for constant maternal care. When I envision his future life without me, those are the images I conjure up mostly to save my sanity- a life where he is happy, productive, and safe.
I create those pictures in my mind because frankly, the alternatives are unbearable.
And this is my sticking point with autism, when I contemplate its gifts and its burdens, one that seems permanently impassable for me. I’ve read beautifully constructed essays extolling the virtues of the non-mainstream life, one which does not include college, independent living or an adult relationship. I’ve reached a point in my own consideration of autism’s path where I can see that Justin, despite (or maybe because of) his severe autism, may absolutely revel in his non-typical path, may even be happier than the rest of us (and some days he is).
I’ve permitted myself to entertain the possibility that he will be just fine for those forty years he’ll grace this earth while I’m in my grave, most likely still attempting to control things from afar. I know, intellectually, that everything could be alright.
And then I read articles like the one that came out in the Seattle Times a few months ago, and my heart just takes a slow, treacherous dive through my body and shatters at my feet.
The piece outlines how in Washington state, the watchdog group DRW (Disability Rights Washington) discovered that in over 3,000 abuse, neglect, and safety-violation charges in residential placements, over 1,000 were closed by the Department of Social and Health Services without investigation. In addition to cases of physical abuse, the DRW also reported on cases where individuals’ lives were put in danger by sheer negligence.
One example of this was in the case of adult autistic twins, where one brother was mistakenly given a double dose of insulin, which could have resulted in his death. Sadly, he was the lucky one of the two- his brother was overmedicated as well, resulting in a comatose state, and permanent brain damage.
I’d like to tell you that articles like this are few and far between, but they aren’t. Every year children and adults with autism are abused and sometimes even killed through sheer neglect, or even premeditation. Quite honestly, for years, no matter how wonderful my days with Justin are, these are often the last thoughts I have before I drift off into slumber.
And that’s the crux of the issue for me, the one I feel separates me from my friends and family with typically developing children, and even separates me from those within my community at times as well. I can’t fathom that when I die, I won’t know the people who will be caring for my boy when he’s old- in fact, they won’t even have been born yet. I can’t quite grasp the fact that he’ll always need intensive care, and his father and I won’t be around forever to deliver it.
I can’t accept that even if things go as well as possible, he just might be lonely for half of his life.
It’s my personal great divide, and after nine years embroiled in autism, I still don’t know how to cross it.
June 21, 2010
I trust this letter finds you happy and healthy. I hope by the time you receive this I will have been gone for many decades, that this last missive in your mother’s attempts to parent you from beyond the grave will be delivered to you when you are old, but still well. Forgive me, but really, why should death preclude me from continuing to control everything?
You may have been wondering all of these years why your brother periodically reads passages to you from me, although if I’m honest I know he’ll never be certain how much you really understand of what you hear, how much of the sentiment of what I write will pierce through your autism and nourish your soul. The idea to pen this series of letters came to me years ago when I read about a young mom, tragically afflicted with terminal cancer. She created videos for her toddler daughter to be spaced throughout her lifetime so that her child would know her just a little, and would at least bask in the certainty that her mother’s love did not end with her death. I wrote all of these letters instead of videotaping myself because I feared that seeing me would confuse you, perhaps incite you to ask for me post-mortem, the thought of which I emotionally cannot bear. I wrote the lion’s share of them before I grew truly ancient, because although most of your great-grandparents lived to be almost obscene ages, you never know when it will be your time. I didn’t want to be caught unprepared.
Planning was your mother’s forte.
It was my fondest desire prior to relinquishing my physical self to the mortal world that your last decades on this earth would be productive, safe, engaged. I am certain that your poor little brother, whom I have pestered innumerable times over the last twenty years to watch over you, will be your stalwart companion, your protector, your friend. You two have always been close in your own unique fashion, a fact I attribute far more to your inherent interest in one another’s well-being rather than any scenario your father and I were able to construct over your collective childhood.
For over forty years I have watched him teach you, defend you when necessary, and stand up to you when the situation called for it as well. We tried to promote a bond between you, to make Zachary see that the gifts that came into his life as a result of your autism far outweighed the burdens that inevitably resulted from it. He has assured me many times that in its own way autism enriched his experiences, imbued him with patience and a facility for compassion he would not have possessed otherwise. He has also shared with me that no matter what the disorder taught him in his life, he will always wish for you that autism hadn’t completely overwhelmed yours.
I understand how he feels.
When I was a relatively younger woman I once read an article about a study conducted in the extremely isolated regions of Sweden, one which contributed to scientists’ collective understanding of the study of epigenetics. After following many families of farmers during several successive generations of feast or famine, the scientists realized this one incontrovertible truth: that everything those farmers ate, smoked, drank, and accepted into their bodies became an integral part of their DNA, their gift to bestow upon future progeny. It turns out that even the choices we make for ourselves prior to our childrens’ births have irrevocable effects, leave lasting impressions on the arc of their lives.
It is my most profound hope that coupled with the choices I made that my love for you, which began long before your cells divided and multiplied in the floating sanctuary of your personal test tube, was passed down to you as well. I hope the strength of my commitment to you became mired in your DNA, a permanent fixture in your cells, a cocoon within which to wrap yourself since I’ve been gone. If there is any vestige of justice left in this world, the differences in your brain will not have permitted you to fully mourn me, to experience the anguish I would have felt at your loss had you gone before me. Instead, I hope you have only remembered the love we had for one another, that unbreakable connection that with luck has sustained you, enveloped you when you were sad, these decades past. I choose to believe that in some fashion I have remained with you, that our bond to each other has transcended death.
So, as I’m writing this last love letter to you I will have to summon some modicum of faith, permit myself to trust that your middle-aged years, your descent into the realm of the elderly, and your arrival there have been for the most part a journey encompassed by hard work, various social opportunities, and frequent visits from those who remain who love you still. I have requested that your brother leave these letters bound in a book for your caretakers to peruse, with each entry marking a new passage in your life, an acknowledgement that you yourself are moving closer to your own final moments. I hope the people who have cared for you, fed you, clothed and housed you, and at the very least enjoyed you to some degree, have read these on occasion. Photos tell a story, but nothing paints a picture more illuminating than words.
If my wish came true, and in their few idle moments they were able to reflect upon these letters that I have left for you as solace and succor in your remaining years, I hope those who live with you will understand this. That before them is an old man yes, one who can intimate an entire conversation with his eyes, but cannot emit one with his mouth. That this elderly gentleman is quite contrary at times, but can be reasoned with, does comprehend the subtleties of demand and request, and will comply in his own time. I hope they fathom your innate intelligence, push you always to accomplish more, solicit from you your best self in all domains. You are capable of so much. I hope that fact has been recognized, and honored.
Finally, my deepest desire in creating this legacy of your life is that your care-givers will be cognizant of how loving you are and were, how affection was always a staple of your personality. I hope my words will convey to them how demonstrating your love for those in your inner circle dominated your days. I wish them to see that once you were an adorable child, toddler, and infant who always eventually conquered his anger and his incompatibility with the typical world with a mighty hug. I hope that my anecdotes of your childhood, the extra time I had to build into our morning routine for your embraces, the way your arms would encircle me at night as I sang your baby song to you and you patted my shoulder in appreciation, will stay forefront in their minds even when you are difficult. I pray that they will see you as a whole being, an entity capable of the full range of human emotion. I hope they will have loved you, even a little.
I do not believe that we will see each other again. Unfortunately, although I’ve tried, my mind has not afforded me the comfort to fully embrace that belief. In the end I think my lack of faith in the afterlife was its own blessing, as it continually pushed me to make every moment we had together count, to elongate and enrich our connection as often as possible. Believing death to be a permanent sleep, which I am certain I will enjoy, made me a better mother.
I have long ago gone into my “good night”, and I wish you safe passage into yours. I will say to you what I whispered in your ear every evening I cared for you, whether you were infant, teen, or grown man. I leave you with this, my forever sweet son.
Sleep well, Justin. I love you with all of my heart, and all of my soul. As always, you are my good boy.