Award winning author Norma Gail asked me some probing questions in an interview shared on her blog.
Here’s a bit of it, with some key quotes available for Tweets embedded by the host,
NORMA GAIL: Autism affects 1-68 children in America. That’s more common than most people probably realize. What are the most basic things you wish people knew about Autism and the families it affects?
SOMETIMES CARE GIVING STINKS: I think I speak for many families of children with autism who want to scream, “NO, IT’S NOT DUE TO BAD PARENTING.” It’s a neurological disorder, most likely genetic rather than environmental in origin (although people debate that with some ferocity). One of the hardest things is that kids with autism are impaired socially and so their parents can invest sacrificial work with little to no emotional connection in response. We were spared that – Joey is very connected emotionally, albeit in some quirky ways.
There is no “cure” for autism or any one therapy that is useful in all cases. Families hope for a “silver bullet” that will solve things, and this can leave us open to bad advice, blaming or other traps.
Parents deal with feelings similar to grieving a death. Various hopes and dreams we hold out for a typical child often have to be given up for a child with autism. Some kids on the autism spectrum grow up to play sports, perform in the arts, excel in academics or vocational skill, get married and all kinds of other things we think of as making for a “good life.” But many will never experience some or all of those things. They have other pleasures – parents have to learn to love those.
Siblings can feel ignored due to all the effort and attention put into caring for the child with autism. The whole family is impacted.
Allies mean a great deal. Educators, medical people, community programs, understanding churches (not always easy to find), and just plain caring folks make life better. There’s a neighbor of ours who routinely keeps going down our sidewalk when clearing his of snow – the time and effort he saves us is a precious gift.
NG: What are some of the greatest challenges faced by parenting a child with a disability?
SCGS: As the book points out, family caregivers – and this applies in situations beyond Autism, such as Alzheimer’s, spousal disability and many other conditions – are trying to fulfill roles beyond the knowledge, skill, energy, patience and finances of a typical individual or family. We get stretched beyond our limits and, really, beyond any realistic expectation of becoming “good at it.”
In our case, we had to deal with Joey’s “meltdowns.” Kids with autism become frustrated when they can’t understand or be understood by others, and this can lead to a violent outburst. It’s not the same as a tantrum, in which a kid wants a toy. It is an all consuming surge of energy in an effort to connect with a world that seems out of touch. It is heartbreaking to try and contain a beloved child who is putting you in serious danger – Joey would punch, kick, bite and throw objects at us.
There were several years where we didn’t think that Joey or any of us would ever sleep. The stuff that makes you laugh after the years of raising a baby keeps going when autism is in play. I sometimes tell people, “Imagine having a combination of newborn and toddler for a couple of decades.”
Parents share war stories of dealing with “the system.” Some school districts are downright hostile to special needs kids, considering them a financial drain on services for “normal” kids. Then there are the insurance issues, efforts to see specialists, quests for specialized therapies – it is exhausting and sometimes fruitless.
Check out the interview. Leave a comment there on Norma Gail’s blog and you might win a signed copy of Raising a Child With Autism.