Friday, June 11, 2021

The Disability Blogger Weekend Link-up is here ta-dah


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: Love That Max: No, he's not lost

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.


Tuesday, June 8, 2021

No, he's not lost

"Hello, you look lost!"

Max had walked away from our table at the outdoor dining space we were at and was standing on the nearby sidewalk. He was just chilling, taking in the comings and goings, when a man who'd been sitting seated at another table approached him.

I could understand why he might think Max was lost. Usually, people don't just stand there on a sidewalk. And Max does have a habit of staring into space when he's processing thoughts. To people who don't know him it might look like he is uncertain, bewildered or disoriented.

It's become very clear to us lately how fine Max is with just standing around. He's been going on walks once in a while to a local fire station where he'll stand on the opposite side of the street on the corner. He's hoping to see some fire engine action, but he also just likes hanging out there. I've driven over to get him a few times and I am always struck by the sight of him standing there, alone. 

While teens often group together on a corner or in a park or wherever in public, that's not Max's life. He is perfectly content with being on that corner by himself. He doesn't even want me or Dave coming along on walks. I don't know if anyone has ever approached him as he's stood there and asked if he's OK; Max hasn't mentioned it.

The day when the man at the restaurant checked in on Max, not knowing that he was with us, felt good. We live in a community full of people who care about the well-being of others. At the same time, it made me once again aware that people who do not look and behave like others stand out in our society. Over the years, I have watched strangers watching Max and it's always unnerved me. 

Max, as usual, was unfazed.

"No," said Max when the guy asked if he was lost.

"He's with us!" I piped up. "He's fine."

The guy smiled and headed back to his seat. 

And Max continued to stand there, just being Max. 

Friday, June 4, 2021

The Disability Blogger Weekend Link-up: now accepting posts!


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: Even better than accommodations for your child: not having to fight for them

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, June 3, 2021

Even better than accommodations for your child: not having to fight for them

Over the weekend, while we were cruising the boardwalk in Wildwood, NJ, Max booked over to the go-kart ride on Morey's Piers. He's been on it before in the same kart as Dave only this time, they didn't have any two seaters. I wasn't sure how that would work out. We had to buy tickets for rides for Ben, too, and headed to the nearby customer service office, which is also where you can request accommodations.

We've mainly had good experiences with accommodations at amusement parks, though I can't say the same about programs and camps I've tried to get Max into over they years and accommodations for school during his early years. This time, though, something unexpected happened. 

As I paid for our tickets, I chatted with the woman behind the desk. "I have a question for you. He's a pretty good driver," I said, gesturing to Max who was standing a few feet away with Dave and Ben. "But do you think he'll be able to handle the course on his own with the other cars zooming around?" I had no underlying intentions—I genuinely wanted her opinion, because I wondered if it might be too much for Max to handle.  

And this woman replied, without hesitation, "What I can do is radio over and tell them to just let your son and another driver race, either you or your husband. You'll be the only people there."

I was blown away. Never before—and I mean never—had anyone offered an accommodation like that. I wouldn't have even thought to ask for it. Maybe this was something they'd offered in the past when two-seater karts weren't available but still: Giving a guest a private ride is huge.

"Wow," I said. "That would be great." 

"Just stand by the exit and they'll let you in," she said, handing me the credit card receipt to sign. 

We walked out the glass doors and returned to the Grand Prix Raceway. There was only a small line. We stood at the exit for five minutes or so, watching karts whiz by us. When time was up, the drivers filed out. And then an attendant opened the gate to let Dave and Max in. Max almost tripped over an orange cone but Dave righted him, got him seated and strapped him in. 

Dave and Max had the course to themselves for several minutes. They both had the biggest grins on their faces the entire time, and so did I. Max did a masterful job of steering around the course while maintaining a good speed, demonstrating excellent coordination. (He later proved his driving prowess once again on the bumper cars.)

When their race was over, the attendant clapped for Max.

I mean. 

Accommodating a person with disability so they can participate in life like anyone does shouldn't be so hard, but as we know, it sure can be. What parent of a disabled child doesn't have a story...or twenty?! As the parent of a child with disabilities, I have grown accustomed to requesting what he needs and advocating for him. Sadly, I am also used to having to fight for his right to have accommodations. It was delightful, heartening and faith-restored-in-humanity-lifting for Max to easily and breezily enjoy the ride. 

Tuesday, June 1, 2021

Make your own song requests, buddy

"You ask!"

"No, you!"

That was Max and me, having a stand-off. We were eating dinner at a restaurant and there was a singer/guitar duo performing. They'd asked the crowd for requests, and Max wanted them to play "It's a Livin' Thing," that '70s song by ELO that is he totally obsessed with.

I wanted him to walk up to them and say what he wanted. We were seated right nearby. If they didn't understand what he was saying, I told him, he could type out the text on his Apple watch. And I'd be there, if he needed me.

"Max, go ahead, ask them for your song!" I urged him.

"NO! YOU!"

We went back and forth and back and forth. I feel pretty firmly these days about Max being as independent as possible. In a growing number of ways, he is. He takes walks alone. He tries to get undressed on his own. He even orders at restaurants alone. But this, he wasn't up for. 

Perhaps he had a bit of stage fright—it wasn't something he'd ever done before. Maybe he figured the singer would not understand him and he didn't want to get into it in front of a crowd. Or maybe he was just in one of those my-parents-can-do-it mood. 

I gave in.

"Do you know the song It's A Livin' Thing?" I asked.

"Yes!" the singer said. "What's that song actually called?"

"It's called Livin' Thing!" said the guitarist.

"That's not something we do," the singer said. "Hey, didn't we get a request for that last year?"

"Yeah!" said the guitarist. "Someone asks for that at least once a year! So I guess that's it for this year!"

Shortly after, a woman at another table requested Hotel California. Given that Max wants to move to L.A., this was not a bad choice.  

They played it, and I impressed absolutely nobody at our table by knowing every single word.

"I want to move to California!" Max announced, for the billionth time.

"I know, buddy, I know," I said. "Maybe someday."

And then he asked, and I should have guessed it was coming, "Can you ask them to play I Love L.A.?" 

And Max could have also guessed what was coming:

"No, YOU ask," I said.



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