We were doubly blessed in January, 1995 with twin boys. Both weighed in at 40 pounds. One was blond and one was dark-haired. There it was - our family complete - three boys under 2 1/2 years of age. Do you remember the poem, what are little boys made of? “Snails, tails and puppy dog tails.” Our lives were busy with diapers, bottles, and watching in amazement how our world went from one to three. 
When our oldest son asked the very next week, after they were home from the hospital, “When can they go back?” I looked at him blurried from little sleep and said lovingly, “No, sweetheart, they are here to stay.”
I knew something was not right about the dark-haired precious little boy we named Casey, after a great uncle. When the twins were developing, the devastating news at 3 1/2 years of age - autism. What is this? Our precious preschooler - this could not be. So, the doctor visits began, and school therapists, along with out-of-pocket expenses.
The most difficult issue with this diagnosis is that every doctor and every therapist has a different treatment. We tried medications, supplements, diets, listening therapies, a moving bed, light therapy, occupational therapy, speech and language psychologists and psychiatrists. The list went on and on. Most of these were not covered by insurance. It really is hard to put a price tag on love. I really understand how parents, when given a diagnosis of autism, will try anything, but every child with autism is different. This is hard for friends and family to understand. My passion and prayer for all families that have this burden to care for, is that one day there will be a cure for autism.
I found that I had to lean on faith. It is not easy. They estimated in 2006 that a child with autism with medical costs alone can run $35,000 per year for the first five years of life. So, you learn to make sacrifices and choices. Even today, now that Casey is 15 1/2, I pray for peace and that Casey’s talents come shining through. I pray this child can leave a mark on this world. I pray for God’s mercy and grace. I hope on in faith.
Twenty states now mandate some insurance coverage for autism screening and/or treatment. Michigan is pushing for this along with some lawmakers. It would be a great benefit for these families if this passes. (See article from Detroit Free Press appended below.) One thing for certain, autism is a very costly diagnosis and goes way beyond the means of caring, loving parents.
Dan A. Penning specializes in helping families with wills, trust for autism and other mental health issues. Please visit this very dedicated father who has first-hand experience with autism.
Lack of health coverage for autism divides Michiganders
BY ROBIN ERB
FREE PRESS MEDICAL WRITER
Posted June 6, 2010
What she really wants is to be just Mom, but that’s nearly impossible when your child’s diagnosis is autism.
It means Rita Douglas is like so many other Michigan parents who have taken on roles as occupational and physical therapist, speech pathologist, behavioral therapist and psychologist, professionals whose expertise can make critical differences in the lives of their autistic children, but whose costs can top $100 an hour.
And in Michigan, insurers generally don’t cover treatment costs.
“There are all kinds of sad stories about parents who mortgaged homes to get treatment for their children,” says Marn Myers, president and CEO of the Judson Center in Royal Oak, which offers services to families with autistic children. “It’s just devastating for families.”
A proposed change in state law would require insurance companies to cover diagnosis and treatment for autism spectrum disorder. Opponents warn that the mandate could increase insurance premiums; supporters say the increase would be less than 1%, and would make a world of difference for families affected by autism.
State Sen. Randy Richardville, R-Monroe, vice-chairman of the Economic Development and Regulatory Reform Committee, has scheduled informational hearings, partly in response to two bills that have passed the state House but must be considered by the Senate.
Meanwhile, the fight over costs has wound through the courts, too. Blue Cross Blue Shield of Michigan has settled two cases — one as recently as last week — with families who asked the courts to force the insurer to pay for at least part of the costs for past behavioral therapy for their autistic children.
It’s not that Blue Cross didn’t want to cover the costs for autism treatments; in fact, it offers an option to employers to buy that coverage, said Helen Stojic, spokeswoman for Michigan’s largest insurer. To keep plans affordable, insurers need to offer flexibility rather than meet state mandates, she argued.
The debate brings into focus the exorbitant costs for treatment and the lengths to which families will go to pay them — draining retirement plans and college funds, selling homes and moving out-of-state to find insurers who routinely cover such costs.
A 2006 study that attempted to calculate societal costs for an autistic person estimated that medical costs alone are about $35,000 a year for the first five years of life.
For the Douglas family in Westland, their son Jacob’s diagnosis when he was 2 1/2 meant immediate and profound changes.
Rita Douglas, a sports medicine therapist, gave up a $40,000-plus a year job to make sure appointments were met and Jacob had round-the-clock care. Therapy at the Hope Center at Beaumont Children’s Hospital eventually helped him speak, but it also wiped out the family’s savings.
“There have been years we’ve spent over $20,000 from out of pocket,” she said.
As for the prospect of relaxing on a beach somewhere this summer with a brainless bit of reading?
Douglas laughed: “Riiight.”
Rather, she’ll spend the days slogging through therapy manuals and providing what care she can for Jacob, now 11 years old, even though she knows it’s experts who can make the most difference.
In an otherwise upbeat conversation recently, her voice abruptly caught. She and her husband Scott, a warranty analyst who recently found a new job after being out of work for most of last year, will have to forgo a trip for their 20th anniversary next year.
“And we think ahead to retirement,” she added. “Both of us are in the 40-and-up club, and when does that come? We don’t know whether we’ll ever be able to afford to even retire.”
Changing behavior
Autism is little understood; its cause and cure have been evasive.
It’s estimated that 1 in 110 children have autism — most of them boys — but it’s unclear whether the prevalence is on the rise or if its rise is because it’s being better identified in children who would have gone undiagnosed years ago.
One of the most widely accepted therapies is applied behavior analysis. It rewards performance for what might seem like the most tedious tasks for most children. But the clock is ticking; this kind of therapy is most effective when children are young. It means understanding what is happening, or rather not happening, inside an autistic mind.
Typically, developing kids are like sponges, soaking up what’s around them and instinctively learning, in part, by mimicking what they see. Even infants search for faces, reacting to the smiles and coos.
An autistic child doesn’t have that same social learning instinct.
Jim and Amy Youngblood of Highland knew something was wrong when their son, Ben, was just an infant. He didn’t respond to people in the room: “He’d literally look through people,” Jim Youngblood recalled. He banged the doors on cupboards relentlessly. Rather than playing with a toy car, he was fixated on its spinning wheels so much so that he went into an inconsolable rage if his parents tried to distract him.
At 1 1/2, Ben was diagnosed with autism.
As the Youngbloods struggled with how to help their son, they were stunned once again: Behavioral therapy — the best and possibly only hope that Ben would one day be able to speak and, they were told, maybe even be semi-independent — would not be covered by their medical insurance.
“You’re being told in one breath that … there’s hope and, even if things aren’t going to be perfect, they can be manageable. But then it’s, ‘By the way, it’s going to be extraordinarily expensive so it might be out of your reach,’ ” Youngblood said.
These days, Youngblood refers to his family’s “burn rate” when he talks of the family income.
“My daughter’s college fund is gone. We went from being responsible and well-prepared, and now we’re just living on the edge,” he said.
He wants to be clear: Therapy was critical; his son can talk these days, though there’s much more to do. The family is still meeting its bills, and so what if there hasn’t been a lot of money for new clothes and such?
“We’re … going to be OK,” he said. “But we have given up a lot, and we’ve burned through a couple of hundred thousand dollars.”
Insurers and opponents of the legislation have noted that there’s no sure-shot therapy. Autistic children can range from high- to low-functioning, and what therapies work for some — whether behavioral, music and art, or even horse-back riding — won’t for others.
But the unknown is precisely why it’s so maddening and overwhelming, said Peggy Meador, of Troy, whose 9-year-old daughter, Maribel, is autistic.
“You think, ‘Maybe if you get though this, this will be all she needs’ or ‘If we get through that, this will be all she needs.’ But it’s never ending,” she said.
Making sacrifices
In Lambertville, 9-year-old Jarret Breznai must go without expensive occupational and speech and language therapy.
His parents long ago burned through their savings, and Ann Breznai gave up her full-time job as a travel agent to be with her son. They don’t have cell phones and cable TV, and she has been driving the same car for more than a decade.
She spends the days devouring anything she can find on autism, comparing therapies, and checking free and low-price community programs to see what might help meet Jarret’s needs for occupational and speech and language therapy.
The Breznais are placing their hopes in inexpensive programs through the local YMCA — sculpture, swimming, rock-climbing — and a therapy horse named Lexi who — at just $20 an hour — is about as cheap as it comes.
Like many children with autism, Jarret is hyper-sensitive to certain senses like touch and sound. But after a year, he can place his face underwater, and he can put on the rock-climbing helmet that used to send him into a panic.
“It’s amazing,” Breznai said.
Such stories don’t surprise Pamela Lemerand, project director at the Autism Collaborative Center at Eastern Michigan University, where she knows that even the center’s low-cost services — just $65 an hour compared with some that top $100 — are still out of reach for some families.
“Even poor people can go into an emergency room and get service, but in this instance, your child is out of luck.”
Contact ROBIN ERB: 313-222-2708 or rerb@freepress.com
Several weeks ago, I shared a poem written by Emily Perl Kingsley entitled, “Welcome to Holland.” (click here to read the “Holland” Reflections blog post) The poem reflects Kingsley’s experience of raising a child with a disability to help people who have not shared that unique experience to understand it and in some small way imagine how it would feel.
One Saturday morning, we packed our provisions for the day and headed over to the Putt and Paddle at the The River in Glen Arbor, Michigan (www.theriverglenarbor.com) and met Mike, the owner, to outfit ourselves with a kayak for the day’s trip. We chose a trip down the Crystal River and Mike and his crew took good care of us in driving us to the “drop spot” for a several-hour journey down the river.
Remember, whatever disappointments you may experience in your vacation that was supposed to take you to your version of “Italy,” that sometimes the experiences you have in “Holland” are even more special and meaningful.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills…. and Holland has tulips. Holland even has Rembrandts.
A few weeks ago I posted a blog about 
