I recently had a casual conversation with someone I had never met before, and I ended up describing the family I grew up in. I found myself saying, easily, I have four brothers, and one passed away a few years ago. I then had to do a quick calculation to discover that it has been, in fact, eight years.
Maybe it’s the eight years that makes it so I can bring up my brother without that feeling of creeping sadness anymore. My siblings and I can bring him up in conversation and make jokes at his expense. (Sorry, Dan.) I even slipped behind the wheel of his old car and drove it, and didn’t feel that desperate, aching loss. Just a pleasant familiar sensation of a loved one who may be gone but is not really gone.
Grief is a tricky thing. There’s no timetable to it. No one right way to do it. For me, it’s incredibly personal. I know some even like to take their grief and turn it into social media campaigns, and while that seems incredibly vulgar and inappropriate to me, I suppose it can help some individuals navigate those waters.
In stark contrast to the grief journey of losing my brother to illness is the grief journey of special needs parenting. Time cannot heal this one. It’s a wound that is ever-open, ever-throbbing.
School’s out for the summer, and so the last week, L’s elementary school did a little music festival performance. I snuck in late and stood at the back. When L’s autism class “performed” a song, it was adorable, and the crowd cheered more loudly than they otherwise would, because that’s what you do for special needs kids.
I get emotional when I watch my boys perform on the odd school occasion. Maybe I always will. It’s a complicated flood of proud of how far we’ve come, but desperate sadness that this is their life. That people cheered loudly for L—the large man child, who was twirling and stimming with his hands as he looked everywhere but at people—is kindness and compassion. And pity.
My boys bring a lot of joy to people. L, in particular, is so sweet and silly that the people around him adore him, and they show it. And I absolutely love that. In many ways, it’s nice that he’s that kind of autistic child – the kind that people don’t mind helping or working with because he’s just fun.
But what a life to be trapped in. To be at constant war with your body and your mind. Lonely. Struggling with basic things that occur to a typical brain that just don’t compute. Feeling like a foreigner in a foreign land.
W’s severe special needs school did a production of Encanto for their year-end production. I, again, snuck in late and stood at the back. And I sobbed through the whole thing.
I looked around at the other families there, mostly smiling, mostly pleased with their disabled children on stage performing and enjoying the experience. And I wondered, when? When does the grief over the hand dealt to these young people ever dull?
Listen to the RJK Jr. interview with Joe Rogan. And at about the 2h 30m mark, Rogan asks RFK if the endless abuse he gets ever gets to him. His response is a miracle to my ears, and even more so because it will be heard by millions.
Some of the writers and commentators I follow still consider RFK Jr. to be a whacko. That he’s spouted pseudoscience for many years and should not be taken seriously. They flippantly push the autism epidemic aside and says, “we just don’t know what causes it,” and give vague reasons for the explosion of neurological disease that is crippling the rising generation.
Perhaps they should all have to watch the burgeoning autism classrooms, or spend just a day in a home like mine. Which obviously won’t happen, but at least RFK Jr. is out there saying the thing and sticking to his principles. Autism needs to be taken seriously, and not in a I’m-vaguely-curious about it way. My boys are obviously disabled, but by what? What happened to them?
That’s not even to mention the untold millions who have lurking damage, but they’re good at pretending they’re fine.
Where does this end? How many kids are we going to sacrifice on some vague altar without getting to the bottom of it by asking the absolutely obvious questions?
Since Substack reminded me today that it’s been months since I’ve attempted to write, I gave some hard thought to my concept here of the Autism Chronicles. Telling my boys’ stories. In some ways, it feels like mucking around in a wound that just doesn’t heal, so although I know I should, I shrink away from it—a bit cowardly, to be honest.
But RFK Jr. is out there. Saying the words and not backing down. So I suppose I shouldn’t, either. I will face the demon.
Stay tuned.
Thank you for sharing. If vaccines don’t effect autism, why won’t the cdc do the tests?
Hi Marianne Knight. I saw your comment on Paul Offits substack. I believe hes the same Offit that has claimed that babies can take 1000 or 10000 vaccines without any risk of anything? In my view hes a dangerous nutcase hiding behind a white coat, just like Fauci "I AM SCIENCE". Oh what horror. I was touched by your personal experience. Maybe these things can help: someone here in Denmark had good results with their autistic child, who improved remarkably just through diet change. He was considered to be genetically autistic. They wrote about their diet change in "Kernesund Familie", not out in englidh as far as I know. Then you might look for a pdf of a book by Kerri Rivera. She has good results too, and uses MMS/CDS and diet. Then look for silica water to remove aluminium. There might be some homeopathic remedies that could help too. I hope you can make good use of this info. - Light and Love -