Friday, September 17, 2021

The Disability Blogger Weekend Link-up: here!


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Is it OK to leave your teen with disabilities home alone? 

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Thursday, September 16, 2021

When is it OK to leave your teen with disabilities home alone?

Some days, Max is more responsible than I am. He remembers that he needs to take his meds. He knows when his music therapy class is scheduled and lets us know. He asked the other day why his teacher hadn't yet given him any homework.

In similarly awesome news, Max's independence has really taken off in the last year. He is now walking places on his own (he has an AppleWatch to stay connected), grabbing his own drinks of water and regularly reminding us of his plans to relocate to L.A. sooner rather than later. 

So it would seem at odds that I have qualms about leaving him on his own at home for periods of time. But I do. 

This weekend, Sabrina and Ben wanted to hit the drive-thru Starbucks. That is what counts for adventure these days, and I am always in the mood for a decaf mocha frappe. Max preferred to hang in his Max Cave, aka our basement. 

Dave was away, and I hesitated to leave Max alone.

Sabrina tried to cajole him into coming but, nope. 

While there are no developmental guidebooks for children with disabilities, given that every child develops on their own timeline and in their own way, these days I struggle with the lack of a handbook for raising a young adult with disabilities. It is a tough balance between letting Max have his freedom, making sure he's safe, and learning to let go. 

The Starbucks is 15 minutes away, but with ordering and coming home we'd be gone for about 45 minutes, maybe an hour with traffic. I haven't yet left Max alone for that length of time. I decided it would be OK, although some worst-case scenarios ran through my head as I drove off. I had to work through them. 

In case of emergency, would Max be able to get out of the basement fast? 

Yes, he is capable of getting up the stairs and opening the front door. He would know to text us, and he knows to dial 911.

If someone rang the doorbell, would Max know not to open it to a stranger?

Yup. We've had that conversation, he understands.

If he needed to use the bathroom, would he be OK?

Shoot, should have checked before I left, but he can handle it to some extent.

What if he has a seizure?

For that, I had no answer. Max's seizures are under control with meds. And in the end, I have to trust in them, too. 

Even if Max's life skills and physical skills are not at an 18-year-old level, he has maturity and smarts on his side. In the end, I trusted in him. And in the fact that because he can be a total couch potato, the time would zoom by and he wouldn't even wonder where we were.  

Sure enough, we went, we Ventied, we returned. Max was exactly where I'd left him, watching iCarly. 

"Did you like Starbucks?" he asked.

"I did!" he said.

"They have Starbucks in Los Angeles," he helpfully pointed out.

To be continued, as always.

Saturday, September 11, 2021

In memory of Melissa Renee Vincent: Say her name

I did not know her. But I'd seen her face on "Missing" flyers everywhere around Hoboken, NJ, in the weeks following 9/11 where we both lived and it haunted me. She seemed like someone I could have been friends with. Back in 2013, I figured out who she was and vowed to always remember her.

Melissa Renee Vincent.  

Today marks twenty years since that terrible day and it is still hard to process the magnitude of what occurred: 2,997 lives taken, countless hearts forever hollowed. I did not personally know anyone who perished that day. So I do my part to keep her memory alive, this one beautiful person from the hometown of our twenties. 

Melissa is not another tragic number. She was like you, she was like me. From the tributes that I've read and comments people have left here, I know that she grew up in a small town in Western New York and attended college at SUNY Oswego. She liked baseball games, movies, Broadway shows and singing. She was known for being kind and generous. She had a good job, good friends and a family who adored her. After I first wrote about Melissa, people mentioned they had seen her father on CNN pleading for leads about her whereabouts.

She would have turned 48 in October. 

This year I've donated to the Community Foodbank of NJ, a nonprofit in the state we've both lived in, to honor her memory. This morning, I'm listening to the names being read at the remembrance ceremony,  the memories, the tributes, the love for 2,977 people with 2,977 stories.  I will be there for Melissa's name, toward the end.

Melissa Renee Vincent, I will never forget. 

Thursday, September 9, 2021

Just the usual back-to-school chaos. Yay!

Last September, there was no actual back to school—Max did virtual schooling until March, when he was fully vaccinated. So BTS this year, with all its do-they-have-shoes-that-fit-did-I-fill-out-all-the-forms-need-to-reload-that-Covid-testing-app-OMG-forgot-to-pack-backup-clothes-what-kind of-cool-snacks-should-I-give-them hustle and bustle was kinda sorta a relief.

I'm more nervous than I was last spring because of the variants and how contagious they are, but grateful that the vaccine significantly reduces the risk of the worst side effects. I'm also grateful that Max puts up with wearing a mask. Also: I have worried so much this past year about all the things that I've grown kinda numb to it.

When Max came home from school and I asked how the day went, he gave a typical teen answer: "OK." 


"Just OK?" I asked.

"It's not Los Angeles," said he, the place where he'd rather be. 

At least he had the hat. 

Wishing all of your children and excellent start to their school year and much sanity to you!

Friday, September 3, 2021

The Disability Blogger Weekend Link-up is ready for Labor Day


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: The next phase of his life

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.



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