All Too Aware

It’s easy to feel jaded about Autism Awareness Month when your child is 21. It’s redundant. You’ve lived, breathed, and been consumed by autism for years, so when your special month rolls around you just feel numb. At least that’s what you tell yourself.

I’ve dodged the blue lightbulbs and puzzle pieces for a while now. I celebrate new research, but eschew the activities that accompany this special time of year. It reminds me of Christmas. Some people are gleeful when it finally arrives, others are depressed or feel pressured to enjoy it.

I’m crazy about my son just not about awareness month. I thought I would remain indifferent about all of it until recently. I gave a TED talk a few weeks ago where I took material from a play I wrote in 2008 inspired by my child, and mashed it up with material from Driving Miss Daisy. The talk addressed racism, ableism, discrimination, empathy–The Other—and I presented it with three other actors. I had to stop performing the full-length years ago because it was emotionally draining. I knew I wouldn’t have a problem with this talk however, because it was short and similar to one I gave in 2010. Save for a brief monologue at the end.

I started writing the original play when my son was seven. We were busy “fixing” him at the time, and even though I was overwhelmed and insecure I had faith he would get better and lead a healthy, independent life. But I’ve learned to manage my expectations at this point. Josh is still severe. Without the benefit of a medical breakthrough, or a miraculous stem cell operation, or extreme advances in the way I pray, he won’t experience the life I’d envisioned. It never occurred to me how prescient my writing would be. Many of my fears about his future have come to fruition. I used to joke that I needed to live to a hundred to ensure his well-being and safety. Today I am just relieved and blessed that Josh is happy and he senses how much we love him.

I typically bring that love with me when I perform. On the evening of the talk, when it was nearing its end, it was finally time for my character to recite the final monologue. I had relaxed into the piece and started breathing. I looked away from the audience like I typically do to deliver the mother’s lines. She’s pretending to whisper to her young son, trying to guess what’s in his head. Suddenly, when I was looking down and speaking to this imaginary boy, every memory of Josh and his childhood exploded in my brain. Flashes, momentary eruptions, of Josh at the pool, Josh having a rage, Josh having a seizure, Josh at his work table, Josh in the bathtub, my husband and I fighting, my daughter swinging with him, me crying with him, me lying next to him in his car bed, Josh having an EEG, a blood transfusion, a brain surgery. I could feel my throat tightening and my eyes burning. I was used to channeling my son onstage but this was different. This mother was still craving normal.

Then the monologue was over. I had to tuck myself back in. I pressed my lips together for a minute so they wouldn’t quiver. I felt my nose running. After we took our bows I stepped offstage for a moment to release the pressure.

I was tired after the conference, but sometimes exhaustion bares secrets you’d rather not admit to yourself. It hurts that it doesn’t matter what day, week, or special month it is I still have the gnawing desire for my son to hug me back when I put my arms around him. I still wish he could tell me what he was thinking. “And I dream that one day he will look me in the eyes and say, I love you.” I am not indifferent or numb. The longing will always be there, and I’m all too aware of it.

The Black Therapist and the Autistic Man

After I read this article, and watched the video, and blew my nose, I thought to myself, “If this ever happened to my autistic son’s African American therapist–if he were ever popped by a, ‘I don’t know why I shot him’ law officer, I wouldn’t be able to forgive him. I still feel that way. Especially because these officers added insult to injury by flipping Kinsey over and cuffing him–while he was bleeding. If they’d hit an artery and he had bled out and died, they would have to stand trial for what, second degree murder? Negligent homicide? Hopefully, but probably, not anything. He had his hands up in the air for God’s sake. The lack of understanding and respect in this country–on every level–has me thinking that society’s gone f___ing crazy. I wrote My Son almost TEN years ago. It was prescient, and now it’s dated. Life matters. Whether you’re black, white, disabled, LGBT, a veteran, a senior, a cop, or a child. A little Kumbaya would be nice, I just hope we don’t wipe each other out.

http://www.foxnews.com/us/2016/07/21/south-florida-police-shoot-autistic-mans-caretaker-as-lies-in-street.html

South Florida Police Shoot Autistic Man’s Caretaker as He Lies in Street

Police in South Florida Thursday said they were investigating an officer who shot and wounded an autistic man’s caretaker, as video emerged apparently showing the caretaker lying down with his arms raised before being shot.

Police were responding to reports of a man threatening to shoot himself on Monday, North Miami Assistant Police Chief Neal Cuevas told The Miami Herald.

Officers arrived to find 47-year-old Charles Kinsey, a therapist who works with people with disabilities, according to WSVN-TV. His 27-year-old patient reportedly ran away from a group home. The therapist claimed he was trying to return his patient to the facility.

Police ordered Kinsey and the patient, who was sitting in the street playing with a toy truck, to lie on the ground. The video shows Kinsey lying down and putting his hands up while trying to get his patient to comply.

An officer then fired three times, striking Kinsey in the leg, Cuevas said. No weapon was found.

The latest shooting comes amid weeks of violence involving police. Three law enforcement officers were fatally shot and three others wounded Sunday in Baton Rouge, Louisiana, by a shooter whom police also gunned down. Two weeks earlier, two white officers in Baton Rouge killed a black man, Alton Sterling, 37, on July 5 during a scuffle at a convenience store. That shooting, captured on cellphone video, provoked widespread protests about police treatment of the black community.

On July 6, another black man, 32-year-old Philando Castile, was killed in Minnesota when a police officer pulled him over. The next day, a sniper killed five Dallas police officers as they guarded a peaceful protest.

In Florida, Kinsey’s attorney, Hilton Napoleon, provided a cellphone video to the Herald on Wednesday taken moments before the shooting. It shows Kinsey lying in the middle of the street with his hands up, asking the officers not to shoot him, while the autistic man sits next to him, yelling at him to “shut up.”

“Sir, there’s no need for firearms,” Kinsey said he told police before he was shot, according to WSVN. “It was so surprising. It was like a mosquito bite.”

Kinsey is black. Police haven’t released the name or race of the officer who shot him but said he’s been placed on administrative leave, which is standard.

The investigation has been turned over to the Miami-Dade State Attorney’s Office, Cuevas said.

In an interview with the TV station, Kinsey said he was more worried about his patient than himself during the incident.

“As long as I’ve got my hands up, they’re not going to shoot me. This is what I’m thinking. They’re not going to shoot me,” he said. “Wow, was I wrong.”

 

The Associated Press contributed to this report.

 

‘Tis the Season

I haven’t written a ‘Tis the Season blog in over four years because I was dazed by my autistic son’s puberty, seizures, and behaviors. But our situation with Josh has greatly improved. (Oh, how I hope I’m not tempting fate.) So I would especially like to thank my blessings this year and give praise to the phrase, “This Too Shall Pass.” I’m happy to say I’m grateful that:

1) Josh and I didn’t fall apart when his twin sister went off to college. (Okay, that’s a lie. I fell apart.) Josh is low-functioning and non-verbal but he has a very high EQ. He senses that his connection with “Sissy” is permanent and unconditional. I wanted her to go to school on another coast so she wouldn’t worry about him so excessively. Her fears wouldn’t be as immediate. But she didn’t fly away, she chose a college close by because after all it was her decision and not mine, etc. I’m secretly thrilled, (okay, not secretly) about her choice.

2) He’ not as aggressive. It could have been his meds, it could have been puberty, but whatever it was he’s not unkind to us anymore. The Dr. Jekyll and Mr. Hyde days are over. (For the most part.) Josh’s sweet, playful personality is back and we can take him out in the community again for extended periods. Especially to restaurants. I’d love to blame my weight gain on him but I’m pretty sure it’s all the cookies and candy I hide in my closet.

3) He still likes me. And not just because I’m Mom and he needs me. He recognized in some intuitive way that I couldn’t handle any extra trauma last year. He had most of his seizures safely at home rather than on the pavement at school. And I wasn’t as stressed when we just sat in his man cave/therapy room together and watched his favorite Teen Nick shows. Over and over and over again. I’ve memorized every single episode of Drake and Josh, Victorious, Zoey101, and iCarly that has ever been produced. I’m going to contact the network and tell them we deserve a frequent viewing card.

4) We have renewed hope about his epilepsy. He might not be a candidate for another brain surgery, but after two seizure labs and guidance from some exceptional neurologists we are exploring new avenues. We might even consider getting Josh a service dog. If our Alpha cat will allow it. Though I’m pretty sure I’ll be the designated dog walker when it’s 5 degrees outside.

5) I had Thanksgiving at my house again. Like other ASD parents I’ve experienced some painful holiday dinners. Two years ago I just leaned over at the table and broke down in front of my guests. All it took was a well-meaning comment from my mother. She had observed Josh going nuts for about two hours. “Shelley, if anyone can handle it honey, you can.” Um, no, not really. It had been an evening of Mr. Hyde. Josh circled the table shrieking, he knocked glasses over, and he chased after me with teeth bared. He took his therapy room apart and couldn’t self-calm. There wasn’t a single minute when everyone was together at the table at the same time. We had to take turns driving him around just so we could eat. At least it wasn’t like the year before when he set off my mother’s burglar alarm between bites of lime jello and green bean casserole. The police officer lectured him on her front lawn. “Son, we don’t set off alarms unless we have to.” (I didn’t tell him Josh had set off two fire alarms the week before.) “Do you understand me?” Um, no, not really. My kid couldn’t stop grinning and I was mortified. (God, how I wish aides worked on holidays.) But it’s okay. I finally learned about wine, and I am truly grateful. Good luck to all of you this holiday season, and may our new year be merry and bright!

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