Jeff Howe at CNN.com talks frankly about the expenses of raising a kid with severe autism. It's a hard article to read, because the dude is still firmly stuck in the grief phase.
Howe's five-year old son has huge needs. He isn't potty trained. He has major behavior problems. He has major cognitive impairments. That part of his story is straight forward and indisputable.
He discusses the financial obligations for raising a son with such huge needs. The child needs 24 hour care, so they employ a nanny who costs $24,000 per year. They spend $1,800 on diapers. $5,400 goes towards medical costs for their son. He says that they don't have the energy to do after-school activities and therapy for him. If they did, their expenses would be even higher. They are worried about the cost down the road, when his schooling is done. Full-time care facilities for people with extreme disabilities could be $100,000 per year.
Those numbers are straight forward and indisputable. The government has some programs to help out with respite care and therapy, but as Howe says, it's a major pain in the ass to find those programs. Sometimes the reimbursement for services is so minimal that it's barely worth the time to fill out all the paperwork.
What makes Howe's story so messy is that he is still firmly in the grief phase of special needs parenting. He is still very upset that his son is struggling with basic life skills. That's an understandable grief. But he's also grieving the life that his family won't have, because his son is different. This is selfish grief and, really, needs to end fast.
Howe defines a "normal" life as one where "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." It means a hefty college savings for his older daughter, so she can attend the college of her choice.
This is the "normal" life that all us smart, dues-paying, elite college attending people believe that they are owed. There are two dominant "normal" upper-middle class lifestyles. One is dual working family with pristine daycares, or the single earning family with SAHM who is the pillar of the community. It involves a nice house in a nice community and one vacation per year to a hotel on an island with a swim-up bar and water slides of the kids. People like us feel entitled to this lifestyle, because we're smart, worked hard, and made lots of sacrifices in our 20's. Everybody else has that, so we should, too.
If you have a special needs kid, you might not get that. One person may have to end the perfect career to manage the schooling, health care, and paperwork that goes along with the kid. Your kid may not be able to travel to the fancy hotel on an island. You can't be a pillar of the community, if your child doesn't attend a local school and can't go to church.
That part of his story has to be very grating to people who live outside the upper-middle class bubble. Nobody is entitled to the college of their choice, a house, a fulfilling career, and a nanny. Honestly, he needs to get over those disappointments pronto.
But let's get back to the part of his story that needs remedy. A family with a severely impaired child does have major needs. They need help from behaviorists who will teach the child to control tantrums, to not self-injure, to not destroy family property, and to stay within the home. There are basic safety issues. I know kids who have to be locked in their bedrooms at night, because they'll run out of the house at 3am and get lost. It's very hard to get the state or the school system to provide this help outside of school hours.
Parents of severely affected, special needs kids do need sanity breaks. Howe's family paid $24,000 per year for a nanny. That seems like a lot for a kid who is in school from 9 to 3 every day. I didn't quite understand if his wife worked a paying gig or not. Some states provide something called "respite care" for those needed sanity breaks, but I've heard that the paperwork was monumental, the waiting lists are long, and the actual respite is too short.
Uncovered medical expenses are a large problem with raising special needs kids. Insurance companies are experts at avoiding paying for therapy. There are very strict rules in New Jersey, but they still don't pay. At this point, our outside school therapy needs are pretty minimal, but others aren't so lucky.
I wish that Howe had written this article without the grief and the entitlement. Those sentiments muddy the story. The real story is that parents do need more financial support from the government to help meet the monumental expenses of raising a special needs kid.
Related: My guest-blog post at the Atlantic.