By Kim Stagliano
The push in books, the media, journals, among politicians to normalize autism, to spread lies that autism has always been among us in the vast numbers we face today, to make it appear to be something that is just a brain difference, or worse, an improvement over mere mortals is disrespectful and demoralizing to all of us who have children on the spectrum.
Below are videos from a Mom documenting her son's struggles over a year. For her child, Kreed. For her family. In my family we have 21
years plus 19 years plus 15 years of hardship. There's no point in sugar coating autism here. If anyone thinks this Mom (or I) show disrespect or that we don't accept or love our kids - please just find somewhere else to read. Autism here is a fractured fairy tale.
The only way we're going to see any sort of serious acknowledgement of the severe impact of autism on individuals, families and society is by taking a hard look at reality. These videos provide that. Send us your own videos if you'd like. We'll run them not to expose our kids - but to protect them. Patronize us with palliative care? No thanks, Hillary. Lump our kids in with "normal" special ed and disabilities? You think we have special schools for autism, sensitive Santas, autism day at theme parks, additional special education masters level certificates in autism because autism is the same as traditional developmental disabilities or because it is VASTLY different? Get real, people. Open your eyes.
No one wants to share the dark underbelly of our lives. The trauma of autism on a family. I see friends whose kids seize weekly, daily. Friends whose kids have such gut problems that they can't go to school and need a feeding tube. Marriages collapsing under the weight of the stress. Bank accounts ransacked. THIS SH*T IS HARD.
Here? We don't sleep. We're up at midnight, 3:00am, 4:00am. We don't go back to proper sleep. Ever. One daughter wants Nick Jr to watch the schedule as each half hour ticks off - not the actual programs. One daughter wants her DVDs in order in a case and 3 i Devices on which to stare at screen shots from HooplaKidz toddler videos. One daughter just plain wakes up due to the noise back and forth in our upstairs hallway. By the time 5:30am rolls around, we've been pacing, putting back to bed, moving over, hiding iPads and remotes for hours. Then we go to our jobs. And function. Sort of.
Share your videos. Show up in front of politicians with your precious child. My girls make grown men weep. That's the severity of their autism - juxtaposed with their beauty and precious personalities.
Kim Stagliano is Managing Editor of Age of Autism. Her novel, House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book. 101 Tips for Parents of Girls with Autism is also available.