Raising a special-needs child is frustrating, chaotic, rewarding — and very, very expensive. The author shares his family's challenges caring for their severely autistic son.
Our kid is nothing like your kid.
I don’t mean that in an every-child-is-unique-as-a-snowflake way. I mean that my wife, Alysia, and I are pretty sure that Finn hails from some distant, unknown planet.
His favorite foods include dirt and discarded water balloons. He spends hours a day in a headstand. He giggles maniacally at any expression of pain or distress. Recently I caught him shattering our water glasses on the patio. While I went for the broom, he dumped a quart of milk onto our kitchen floor. I tried to scold him, but he was already engrossed in one of his favorite hobbies: smelling his right foot.
What’s wrong with this child? There are a lot of ways to answer that question.
We have some acronyms, for instance: He’s been diagnosed with CVI (cortical vision impairment), ASD (autism spectrum disorder), and DCD (developmental cognitive disability). My favorite, PDD-NOS (pervasive developmental delay not otherwise specified), is the most accurate. It’s doctor-speak for “We have no earthly idea what’s wrong with your child.”
I often find myself grasping for otherworldly metaphors to explain our experience. Imagine E.T. came to your house but never figured out how to phone home. No spaceship. No tearful departure. Just you, the other humans in the house, and E.T. He can’t really communicate, so domestic dramas take place through wild gestures and improvised sign language.
“We are not of his world,” Alysia and I tell ourselves. “And he is not of ours.” The best we can do is help our alien child negotiate the baffling planet on which he’s found himself.
A quarter of U.S. households have a member with special needs. More than 8% of kids under 15 have a disability, and half of those are deemed severe.
What we share in common with the parents of all those special-needs children is that our kids have almost nothing in common: Within the “autism spectrum” alone there is far more diversity than there is within the rest of the human population. As one clinical psychologist told me, “Saying you study autism is like saying you study the world of non-elephant animals.”
Special-needs parents do share one thing: the eviscerating cost of our children. It’s one of the awful ironies of this unchosen life. Not only do we divorce more frequently and suffer from more mental health problems, but we pay dearly for the privilege.
According to Autism Speaks, the cost of caring for an autistic person over his or her lifetime is $2.3 million. Families shoulder much of that burden, and the strain on state and federal governments threatens to tear away whatever safety net remains.
Some of the expenses can be tabulated, like the $1,800 a year we spend on diapers for our 5-year-old or the $24,000 a year we pay for a caregiver we wouldn’t otherwise employ.
Others are harder to calculate. Finn mutilates toys, shreds books into confetti, shatters picture frames, and tears at our emotions in ways we can’t fathom. Is my budding rheumatism at age 42 a product of this long-term stress? Then there are the inevitable tensions between Alysia (who is also 42) and me, as we claw at each other for some small pocket of oxygen — a night out with friends, a few days of escape, a quiet place to work in an otherwise suffocating environment.
Despite it all — the broken glass, the tantrums, the bite marks, the feces Pollocked across his bedroom wall — I quite love my sweet, strange boy. There are mornings when I get up early and steal into Finn’s room. I drift back off to sleep, but wake to find him smiling mysteriously and running his hand over my cheek, entranced by the sensation of stubble against his inner arm. Then he giggles and tries to do a headstand on my stomach. Finn is my son, and I love him. It has come as unwelcome news, then, that it’s not clear how we’ll afford to give him everything he so desperately needs.
Annabel was born two years before Finn, so I knew all about wellness visits. Mother takes baby to the doctor. Doctor puts baby on a scale. Baby laughs. Mother smiles. Everyone is very, very well.
Tragedy, on the other hand, is what happens to other people. The fire. The cancer. The bus. And then, in the silence between the first and second ring on my office phone, it was my turn. It sounds melodramatic to say that I knew, even before I’d picked up the receiver, that my old life had already “broken, quickly, like a stick,” as author Lorrie Moore once wrote. But it’s true.
“We have an appointment with a neurologist,” Alysia said, her voice flat. “Dr. Dalton thinks Finn might have developmental delays.”
“Delays,” I said. I could hear my colleagues laughing in the adjoining room. It was bright and sunny in the magazine office where I worked.
“What does that mean?” I asked. Alysia didn’t know. “He should be smiling at Annabel,” she said. There were other concerns. His eyes were deeply crossed, and his legs hung funny. He lacked muscle tone. The issues were “global.” Later that afternoon we went to our local coffee shop to talk. Alysia cried. I didn’t.
“We could be dealing with this for months,” she said between sobs. “Or years.” Years? Was that all? Fine. The train is delayed. The ball game is delayed. Our baby is delayed, but will be here, smiling, well, in a year or two.
As it happens, Finn didn’t smile his first year; he barely gained weight until he turned 2; he didn’t walk until he was 3.
Once unresponsive, he began erupting into inconsolable spasms of rage or chewed his cheek into a bloody mass. Alysia and I were left brittle and exhausted. We saw a psychologist, who diagnosed us with another acronym, PTSD — post-traumatic stress disorder. Contrary to the TV-movie version of special-needs parenting, there’s no heroism in our daily lives, only jury-rigged schemes, constantly changing, to help get us through each day.
Finn immediately exacted a serious toll on our finances. Alysia gave up her job as a freelance radio producer. Cost: $25,000 a year.
Despite this, we needed a full-time caregiver to free us up for our new job as advocates — manning the phones and scheduling the legions of occupational, physical, and speech therapists that began trooping in and out to try to help Finn.
For reasons no doctor fully understands, autistic kids often suffer from seemingly unrelated medical conditions. By the time Finn was 3, he had been put under five times, for everything from an exploratory endoscopy to surgery to correct his crossed eyes.
Our grief in those first few years rendered us zombies, sleepwalking through our social and professional obligations. Alysia and I had never been organized; now the sea of insurance forms, medical reports, and test results threatened to swamp every surface of the house. Relegated to professional parent, her creative dreams deferred, Alysia became the primary caregiver, and we became dependent on my career. That put enormous strains on our relationship.
Our version of financial planning at the time was to cross our fingers and hope the checks coming in totaled more than the checks going out. And until recently they had. Alysia now writes essays and memoirs; I teach, and write freelance about business and technology.
In 2006, I coined the term “crowdsourcing” in a feature for Wired magazine. A fat book advance was followed by well-paid speaking engagements and then, in 2009, a Harvard fellowship. I joked that God gave us a lot of money, and a son to spend it on.
In short, our life after the diagnosis was characterized by financial fortune and unending upheaval. We moved three times, enrolled our children in three different daycares, and conferred with nearly a dozen neurologists, pediatricians, dietitians, gastroenterologists, geneticists, and ear, nose, and throat doctors. In the pursuit of speaking gigs or the next great story, I traveled to Bangkok, Milan, Moscow, Kazakhstan, Yangon (formerly Rangoon), and Vienna.
More than two years after Finn’s diagnosis, we had had enough.
In 2010 I accepted a tenure-track post teaching journalism at Northeastern University, and we bought a three-bedroom house in Cambridge, Mass. For the first time in our marriage, we had employer health insurance and a retirement package. Alysia returned to writing and sold a memoir about growing up with her poet father, Steve Abbott.
Our neighbors turned out to be lovely people with a daughter the same age as Annabel; they quickly become best friends. It was almost like a real life. Finn received extensive therapy — speech, occupational, and physical — at a special program in the public preschool, but we failed to enroll him in after-school services. We were simply exhausted after spending years trying to wheedle benefits out of various state and city agencies.
Now we’re plagued by perpetual guilt that we could — should — do more for our son. But like a lot of families with a disabled child — even families like ours, with some means — we’re faced with a Sophie’s Choice: If we empty the bank for therapy for our disabled child, it necessarily means not spending as much on his “neurotypical” older sister. It’s an awful thing to contemplate: No parents should be forced to compute the ROI on their kid.
Sometimes Finn will throw a tantrum and, for no reason at all, pull Annabel’s hair. “Stop, Finn. No!” I’ll scream, reacting with primeval rage at the sight of this attack on an innocent. Annabel simply won’t have it.
“Stop, Daddy,” she will scream through her tears. “Don’t yell at him.” If it were up to her, our every last dollar would go to her brother, the subject of her every poem, her every drawing, the first thought she has on waking and tumbling into his room in search of a hug that is rarely reciprocated. But, of course, it’s not up to her.
* * *
John Nadworny is familiar with scary math. His youngest son, James, recently turned 22, the point at which school districts relinquish responsibility for a special-needs child.
James has Down syndrome; Nadworny’s family has spent two decades preparing for this day. They bought an apartment building near their home, west of Boston. James and two other disabled adults will live with their caregivers. Rents will generate $65,000 a year for the family. That’s not enough: James requires round-the-clock care, daily “programming” to keep him engaged and intellectually fulfilled, and, not least, transportation to and from those various activities.
Nadworny’s experience is helpful, and not just because of James. Nadworny runs a financial-planning practice and is the author, along with a business partner, Cynthia Haddad, of The Special Needs Planning Guide. He says our acute distress makes us like a lot of other families with a disabled child.
The number of children diagnosed with autism has skyrocketed in recent years, from fewer than 1 in 1,000 in the 1980s to 1 in 50 kids today.
Well before Finn hits 22, a wave of disabled children will “age out,” requiring massive amounts of state assistance. So just as baby boomers start putting unprecedented stress on government benefits, a slightly smaller but still significant population of disabled people will be in need of government help too.
“People assume the state will be there to help with their child,” Nadworny says, “but that’s a really risky bet.”
After an initial meet and greet, Nadworny asks us to submit our tax returns, bank statements, and the data on our mortgage and car loans. We provide the necessary paperwork, then file into his office a few weeks later. Nadworny looks nervous. “Frankly, the numbers we have could easily overwhelm you,” he says. Alysia and I look at each other warily. There is, we learn, good news and bad news. Looking at our balance sheet, we see that our assets come to a healthy $930,000, which means while we’re not one-percenters, we’re firmly ensconced in the upper middle class.
Most of our wealth is tied up in our house; the rest is socked away in an ill-considered mix of stocks, fixed-income securities, and other investments. We have no rainy-day fund of liquid assets. Because my book and speech income are so variable, over the past five years, we’ve made anywhere from $80,000 to $270,000, averaging $160,000 or so. Our expenses are high as well, hitting $165,000 in 2011 and $185,000 last year. In the years we run a deficit we tap savings to make up the shortfall.
We hired a bookkeeper last fall to detail our spending and make some sense of the deficit. She found that $30,000 a year went to mortgage payments, $4,400 to utilities, and $9,200 to taxes in 2011. Another $50,000 consisted of reasonable, discretionary expenditures, much of it one-time costs to furnish our new home. The remaining $24,000 is what Alysia and I call a “stupidity tax.” We paid nearly $1,000 in credit card fees and interest payments and an additional $2,300 to sustain my Nicorette habit.
As journalists, we might justify the $2,000 we spent on books and movies as necessary brain food, but as special-needs parents, those expenditures start looking a little more frivolous. So do the $5,300 we spent on clothes in 2011 and the whopping $6,000 we handed over to various restaurants and cafés. Finally, there’s the $6,000 in cash withdrawals.
How much of our money goes to Finn in one form or another? Certainly the $24,000 we spend on our babysitter cum favorite aunt, Gee. If not for Finn’s disability, we could easily manage two children without additional help. Then there’s the $9,000 in out-of-pocket health care costs, $5,400 of which goes toward deductibles for procedures for Finn.
The first step in getting our finances on track, Nadworny tells us, is to control our spending. Then we need to put together a proper savings plan that isn’t locked away in home equity. “You have to live in your house,” Nadworny notes. “So it’s not generally considered a measure of wealth.” We know that at some point in the future we’ll be able to sell it, probably for a decent profit, but it doesn’t help things much now.
And while our $380,000 in savings is decent for our age and income, only 15% is invested in tax-deferred vehicles. Not great, maybe, and something we can surely fix, but it’s where we are at the moment. We have an additional $16,000 in college savings, and in the course of working on this story, we discover $16,000 in a New York State pension fund for Alysia. But all that is chicken scratch against what we’ll need to sustain Finn when he “ages out” of the system.
In the meantime, I’m worried we’re inadequately prepared for any kind of disaster. While Northeastern University provides our family ample health insurance, its $160,000 life insurance policy is a drop in the bucket of what Alysia would need were I to die prematurely. We don’t have any life insurance for Alysia. We haven’t written a will or designated a guardian for the kids. We are, Nadworny implies, an urgent case.
It isn’t as if our long-term goals are lavish: We’d like to retire at 70. We want Annabel to go to any college she chooses. And we want Finn, of course, to have a happy, healthy, richly engaging life.
The bill for achieving those goals? We need to save $800 a month for Annabel’s college alone. We should be contributing the allowable maximum of $17,500 a year to my employer-provided retirement account.
And Finn? “The fact is, you’ll have to rely on government benefits,” says Nadworny, who has already warned us that gaining access to those benefits is incredibly time-consuming. Disabled adults are eligible for Supplemental Security Income as long as their total assets don’t exceed $2,000. Even the measly $4,500 we put into a 529 — a tax-deferred investment vehicle for college savings — must be transferred out of Finn’s name.
All this creates a host of planning issues for special-needs families, since they cannot designate their disabled child as a beneficiary in any will or life insurance policy without jeopardizing his or her eligibility. There are, instead, special-needs trusts that specifically address this concern, but that’s still uncharted territory for us.
The bottom line? Unless we receive some windfall, our combined savings and the SSI benefit won’t come close to covering the $100,000 a year, in 2012 dollars, it could well take to care for Finn, who will need 24-hour attention, continuous learning, and a way to get to and from wherever he needs to go.
We’ve reached the point where our house, basically, is Finn’s trust fund, meaning we’ll be able to apply the proceeds from the sale of that to his care. That, of course, assumes that we won’t still need a big house to take care of him as an adult and that we can make enough money by downscaling to make a dent.
“The problem you have, really, is Gee,” Nadworny says. He looks stricken as he says it.
“Think of it this way,” Nadworny says. “You’re paying your nanny $2,000 a month. “That’s $2,000 you are not saving. That’s equivalent to a” — Nadworny’s fingers fly across his calculator — “$365,000 mortgage. On top of your $417,000 mortgage.”
The metaphor isn’t perfectly fair, of course. We pay neither property insurance nor upkeep on our beloved sitter. Nadworny’s point hits home nonetheless, and with a brutal calculus that’s impossible to avoid.
To the extent we have anything approaching a normal life, Gee makes it happen, a life in which both partners pursue their dreams, attend social events with our friends, and our daughter receives the sort of two-on-one attention that would be her lot if we hadn’t had Finn. But a normal life, by Nadworny’s accounting, might be a luxury we can’t afford.
* * *
Months pass after our first set of meetings with Nadworny. We make some changes right away. We link all our accounts to the online budgeting tool Mint.com, which proves a harsh taskmaster.
Suddenly every expenditure is flashed across my screen when I open my computer in the morning. When we exceed our monthly budget, Mint tells us, in garish red reminders. It’s worked: I’ve quit chewing Nicorette. I haven’t bought a fancy dress shirt in some time. I make a mean smoked bluefish paté that I bring into the office to spread on a bagel.
Of course, these are nips and tucks. Caring for a special-needs child requires a mix of government benefits and personal expenditures. We’ve overcome our congenital phobia toward paperwork and managed to get Finn signed up for a “personal care assistant,” to be paid for through CommonHealth, part of the comprehensive health care legislation passed by then-governor Mitt Romney.
Are we eligible for other benefits? Good question: Part of the struggle families like ours face is the detective work it takes to even discover the benefits hidden, like Easter eggs, in the nooks and crannies of state and federal policies.
We know the CommonHealth money will provide us with $9,555 to retain Gee part-time to help Finn eat, bathe, dress, and “toilet,” the euphemism his teachers use to mean changing a 5-year-old’s diapers. It is a testament to Gee’s heart that she has begun taking Finn, gratis, for a few hours each weekend to give us a spell from his infrequent but violent tantrums.
We’re on track to spend $144,000 this year, and thanks to a new book contract I just signed, we should be able to put at least $50,000 into savings.
Now we have to figure out where to put it. The first step, Nadworny advises, is to max out my contributions to the university’s retirement plan. It will contribute $2 for every $1 of mine, up to 10%.
We’ll roll over the New York State pension Alysia found into an IRA, and maximize her contribution — currently $5,500. Finally, we’ll reduce our tax exposure by starting a simplified employee pension, or SEP, IRA. Originally created to give small-business owners a way to set up pension plans for their employees, it also allows people like us, who make most of their money as independent contractors, to create alternative vehicles for retirement.
To remove any possible asset from Finn’s name, and because he’s unlikely to go to college, we’ll shift the $4,800 in his 529 plan into Annabel’s account, bringing it to $16,000. And, finally, we’ve begun the process of applying for life insurance policies. I’ve recently taken out a $500,000 term life insurance policy to supplement the policy offered by Northeastern. Following Nadworny’s advice, Alysia is applying for an additional $500,000 policy for herself.
And that brings us back to Finn. One byproduct of our economies is that we’ve freed up money that allows us to increase our spending on him. Previously he received all his therapies through the school district. In the fall we entered him in a highly regarded occupational-therapy program. We’re spending $850 a month and consider it worth every cent.
The final frontier for us (and, I suspect, many other families like ours) is to create a will and trust for our children. This is not straightforward. There are specialized vehicles that provide for the care of a kid like Finn without endangering his government benefits. There is also, critically, something called a letter of intent, which spells out the terms of care for a person who can’t express those needs himself. But someone needs to serve as trustee; another person needs to serve as guardian.
How do you ask even a close family member to shoulder what we have taken on? There is, in our case, no obvious contender and no obvious solution.
So there are challenges. We’re used to those. “Don’t look for sudden progress,” a well-meaning neurologist once told us. “Autistic kids get better. But it happens very, very slowly.” Maybe it’s the new therapy, but lately it seems that Finn is experiencing what a less weary parent might call a breakthrough. One day this spring he hugged Annabel, out of the blue. Alysia and I exchanged looks of awe, then joined in. Just like any other family.