LoudounExtra.com
Family Struggles with Costs, Emotional Burdens of Autism
By Sydney Wilmer
Saturday, August 2, 2008
It is a good night if Garath Oldham, 3, sleeps past 4 a.m., his mother Casandra Oldham says. He can't help it, she acknowledges, his medicine wakes him early.
Even if he does sleep, however, the Oldham family is still up by 6 a.m. A therapist arrives at the house shortly thereafter to start the day's Applied Behavioral Analysis (ABA).
Casandra Oldham prepares the first round of medication early, giving each of her two autistic sons a series of medical cocktails, multivitamins and parasite treatments. Over the course of the morning they'll take at least 11 different types of drugs.
Having three young children -- the oldest son, Tristan, is 6 -- would be an ordeal for any family, but there is an acute sense of urgency in the way the Oldham family takes care of itself. Two of the three boys are autistic. And treating the illness that leaves Casandra Oldham's two youngest sons, Korlan, nearly 2, and Garath, 3, "locked behind a wall" cannot wait.
To get the best results in treating autism, children should be very young and therapy should run as close to around-the-clock as possible. But finding the money to pay for 40 hours of ABA therapy a week is overwhelming, said Casandra's husband Bill Oldham, then finding the therapists feels impossible, too.
"We just have to keep moving, though," Casandra Oldham said.
Finding The Money
In trying to overcome this challenge, the Oldham's have lost their savings, their social lives and a sense of normalcy, they say.
Photo Gallery
Living with Autism
Larger Version
Connie Mcgrath, 32, administers Garath Oldham's Applied Behavioral Analysis. The one on one interaction helps students like Garath, 3, who cannot play with other children, speak more and express himself. (Sydney Wilmer)
Larger Version
Casandra Oldham prays with her autistic son Garath, 3, at their home in Loudoun County. Garath cannot pronounce "amen" at the end of his prayer, so closes with "all done." (Sydney Wilmer)
Larger Version
Casandra Oldham plays with her 22-month-old autistic son Korlan in their home near Lansdowne Resort. Korlan's illness was likely triggered by toxin's in the environment, his mother said. (Sydney Wilmer)
Larger Version
Casandra Oldham says she is so lucky that her two autistic sons, Garath, 3, and Korlan, 22-months, are affectionate, something that is unusual among autistic children. Here, the three play in the Oldham's home near Lansdowne Resort. (Sydney Wilmer)
Larger Version
Casandra Oldham prepares Gluten free and Casin free brownies into small bites for her son Garath's Applied Behavioral Analysis therapy. By rewarding him for participating, she hopes Garath will learn to be more communicative. (Sydney Wilmer)
Larger Version
Garath Oldham, 3, was diagnosed over a year ago with autism. Earlier this year his family discovered it was likely triggered by exposure to toxins. (Sydney Wilmer)
View all thumbnails
Even to get the basic therapies, a recommended 40 hours of ABA therapy a week for each of her two sons would cost about $14,000 a month. They compromise at 15-20 hours per child in the summer. During the year, they supplement with several area Special Education Programs in the Loudoun County Public Schools.
"I'm finding myself forced to pick and choose which therapies we are going to do," Casandra Oldham said. "Do I potty train my older kid or do I help my youngest learn how to speak?"
Currently, insurance companies are not required to cover any autism expenses. Legislation requiring insurance companies to cover the costs of ABA up to $36,000 a year per child is now being reviewed by members of the Mandated Services Committee in the Virginia Assembly.
Compounding the problem is the economy. Most families with autistic children take out second mortgages, but the Oldhams, who bought their home in Loudoun for strong school districts two years ago, say they now owe more on their home near Lansdowne than it's worth.
The family bought their suburban home near Lansdowne resort two years ago, before their son Garath was diagnosed and before their youngest, Korlan, was born.
"We planned on refinancing after two years," said Casandra Oldham. After her sons were diagnosed, "we borrowed $20,000 from my mom and have turned to the community for help. Otherwise I don't know what we would do."
The Oldham's held a series of exercise classes in May to raise money for Korlan's therapy this summer after his diagnosis.
Even still, the family has had to cut back how much medicine they give their boys. "The cost is just too high," said Casandra Oldham. "The calculation was $1,180 for both boys together last month. It is sometimes more, sometimes less, but we ask the doctors to try to keep it to $1,000 for both."
This is a sentiment that many parents of autistic children echo. Loudoun County mother Cindy Davis said she has watched her son improve with the help of experimental -- and expensive -- treatments. "My son couldn't talk two years ago, he is almost mainstream now," she explained at the July 28 Autism Summit at Lansdowne.
INTERNET ENHANCED
Related Stories
Related Blogs
Frustrations Mount While Seeking Treatment
"I know if I could afford everything, my babies would get better," Oldham assures.
Families like the Oldham's say one of most frustrating aspects of Autism for parents is the lack of proven therapies, and with high prices, experimentation is not easy. Even ABA, which was approved by the Surgeon General in 2002, only guarantees slight improvements. Success rates have not been quantified.
The Oldham's say they cannot help but wonder if other, more experimental techniques could improve their sons' lives. At the end of the summer, the family plans on using savings to visit a group of doctors in New York -- Defeat Autism Now Doctors -- for testing, which will cost $1,500 for both children.
For now, the family says they will continue to look for the best therapies for their kids that they can afford.
Unexpected and Life-Changing
"I thought I had done everything right," Casandra Oldham said. "I had my kids before I was 35. I stayed healthy. I found out this year that their disease was triggered by toxins in the environment. I felt so powerless."
Casandra Oldham admits, had she known her second son was autistic she might not have had a third child. The disease has completely altered the way the family lives their life.
But Ray Tyson, Casandra Oldham's stepfather who lives with the family to help out, said the real tragedy has been the loss of their two sons.
"When I was pregnant with Korlan, I saw Garath losing his words," said Casandra Oldham. Then at 17 months, her youngest son Korlan began losing his words too, she said. "He stopped making eye contact."
"Both of them were typically developing children, they just disappeared behind the mask of autism," said Tyson. "The thing that became so serious was that Korlan couldn't even chew, he just took food in and swallowed."
"[Autism] prevented Tristan from having brothers he can play with," Tyson said. "This family, they are outdoor people, they like traveling to the parks. But now, the focus is on working towards getting Korlan and Garath back."
Oldham says she knows she is not the only mother with dealing with these issues -- as of December 2007, there were 528 autistic children in Loudoun County Public Schools -- but being in her home all the time, she feels isolated.
Hope for the Future
Casandra Oldham admits freely that dealing with her sons' illness tries her patience and her faith.
"When Garath was diagnosed with autism, I prayed," she said. "And then Korlan got sick … It makes you ask questions. It seems hopeless; it is completely overwhelming."
But the family continues to lean on their beliefs and their church for support. The family attends Saint James Episcopal Church in Leesburg when their sons are feeling well.
And Casandra Oldham takes solace in listening to her son Garath say a quick prayer she taught him. "He can't say amen, so he says 'all done.' "
Garath has the prayer memorized, "Dear God, help me," he says. After a pause, the boy looks up and says, "all done."
Bill Oldham, Korlan and Garath's father, says he would love to see his children mainstream at some point, but for now, he just wants to be able to reach them.
"My hope right now is that they will be able to communicate -- that the kid that is still there -- we can reach out and bring him into society."
Copyright 2009 The Washington Post Company
