In yesterday New York Times magazine, Ron Suskind relates an incredible story about he and wife reached their non-verbal autistic son through his obsession with Walt Disney movies. A number of friends forwarded the article to me, because it was a heart-warming tale. But between the lines, I picked up another theme. It was also a tale of parents working entirely on their own to help their son without a roadmap or assistance from professionals.
Since Owen turned 3, the daunting, never-enough demands of autism have remained inelastic, bottomless. Not knowing what really works, or helps, makes identifying the inessentials all but impossible. You try everything. And we have: from changing his diet to gluten-free to auditory processing, when he spends hours doing high-speed computer tests while different noises ring in his ears. Lots of families run themselves into bankruptcy. We’ve spent about $90,000 a year on Owen. Actually, that’s not so much higher than the norm — autism organizations estimate that it costs about $60,000 a year to provide adequate educational, medical and therapeutic services to an autistic child. About half of that can go to school tuitions, often with some of the money coming from public funding.
He and wife struggled to find an appropriate school and therapy for Owen (yeah). They came up with Owen’s Disney therapy on their own. His wife even homeschooled Owen for a few years.
In the New Yorker, Andrew Solomon tells an entirely different parenting tale. A tale with a horrible ending. Solomon interviews Adam Lanza’s father, Peter Lanza. Lanza talks about the struggles that he and his first wife faced raising a child with Asperger’s and some sort of mental illness. Again, Nancy and Peter were entirely on their own dealing with a child with increasingly frightening behaviors. Ultimately, Nancy homeschooled her troubled son when he wasn’t able to function within a regular school.
Why are parents dealing with these burdens without support?
In our country, schools are forced to care for all children, including those with developmental disorders and mental illnesses. Schools never wanted this job. It’s expensive. Therapy doesn’t fit into their core mission of academic instruction. The courts told them to do it, so they do a half-assed version of helping these kids. Often, parents have to step in to fill in the many voids.
We need to make some changes. Either the federal government has to step in and provide funding for public schools to properly care for disabled children and their families, or that job should fall to another group – medical professionals, maybe. These families need more specialized schools, more therapy, more parental guidance, more social opportunities, more of everything.
Owen Suskind is a success story, and we all love success stories. But how many kids like Owen are trapped in their heads, because their parents didn’t stumble across the correct road to unlocking their thoughts? And how many families, like the Lanzas, are tortured and troubled? Change is needed.