Escape to Los Angeles

Sabrina is doing a summer program at the University of California in San Diego for a few weeks, and Dave ended up taking her and Max to Los Angeles for a week before he dropped her off. Max felt it the trip his right, given that he refers to L.A. as his "home" (he calls our actual house his "vacation home"). The messages I've gotten throughout the week have been rather awesome:

"We got to Los Angeles and Max keeps kissing me as he is so happy."

"We are in the Airbnb and Max is loading dishes into the dishwasher because he says it's his home."

"Mommy, this is where my birthday party will be! In Beverly Hills!"

"Mommy, Ben needs to come here."

"Mommy, why do we live in New Jersey?"

"Mommy I am very so happy."

Another awesome phone call came from Sabrina. As background info, Dave has taken to wearing a phone headset all of the time except for showering and sleeping. It's like living with a telemarketer (no offense, telemarketers). When Dave took Max and Sabrina to Disneyland, I got a call from Sabrina soon after they arrived. "Mommy! People think Daddy works here because of his headset!" Knowing Dave, I'm sure he gave them directions. Or Max did.

As usual, they enjoyed traveling and Max got to see some new fire stations. But they were likely just as happy to be away from our house (er, our vacation house) and apart from the rest of our family after 15 months of extreme togetherness. 

Wishing you and your family extreme summer happiness! 

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It's not just a Father's Day card, it's a milestone

Over the years, the Father's Day and Mother's Day cards Max has brought home from school have always been unofficial milestone markers for me and Dave. Max wrote the card on his own! Max spelled on his own! Max knows that expression! But the words and sentiments he expressed in this year's card were astounding. I asked the teacher if he'd done it on his own. Yes, he had. "He just blew us away," she said.

It is no surprise to anyone in our family that Max's cards for Dave are amazing. He adores Dave and is in total awe of him. Dave is his best friend, the one who goes galavanting with him around New York City, takes him out for steak dinners, accompanies him on hunts to find new ice-cream shops and is generally willing to do anything and everything for Max—including those years when he'd hang out at Home Depot as Max zoomed around with a shopping cart. 

Max and Dave were cool with me sharing these cards. Make that, unabashedly boasting about the two of them. 

Dave and I had  to laugh over the cover of one card, where Max had written both "fire chief" (his job goal) and "movie" (he loves going to movies). "Max, is this card about you or me?" Dave teased him.

I had no idea Max even knew the word "patience."

I'd never before heard Max acknowledge how much the two of them like to joke together. 

See: "Max, is this card about you or me?"

I so love that Max was still thinking about Dave taking him to the prom two years ago. The two of them are excellent travel companions. Their last great trip was a cruise they went on a month before the coronavirus shutdown happened in March 2020. As I write this, Dave, Max and Sabrina are having the time of their life in L.A.

Max's words in this card were amazing. But this is the one that made me well up. 

It reads, "Dear Daddy, Happy Father's Day! I love you. You bring joy into my life."

Oh, yes, Dave does. And it was easy to tell, from the expression on Dave's face as he read the cards, just how much joy Max brings into his life as well.

The Disability Weekend Link-up is here once again

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Subversive speech therapy

"I hate it here!" Max says.

We are out on a drive and he is once again trying to convince me that Los Angeles is a far better place to live than New Jersey.

"I like it here, so we don't agree on that," I say.

"It's not good! L.A. is better!" Max responds.

"I get it, you love Los Angeles and you don't want to live in New Jersey."

He vigorously shakes his head up and down.

"You could say that New Jersey sucks!"

He looks at me.

"When you don't like something, you say it sucks," I explain.

Max doesn't have friends from whom he can pick up colloquial language. He gets it from watching TV, me, Dave and Sabrina, who recently taught him "You idiot!" which Max's uses appropriately. When a truck was blocking the street and a lined of cars piled up behind, Max exclaimed "Idiot!" when we finally drove by. The word isn't completely intelligible, but the intonation is. The irony is not lost on me; "idiot" in older times meant someone who had intellectual disability. I like that Max is owning it.

"Say it, Max!" I urge, and he says something that does not sound at all like "sucks."

S's are hard for him, as are consonants like "k" that require trickier tongue positioning and air flow and ones that involve lip closure like "b" and "p." As always, though, I keep pushing. I've seen it happen in speech therapy: When Max really, really focuses, sounds and words can come out clearer. Not always—his lips and tongue and jaw and cerebrum (the part of the brain that controls speech) do not always bend to his will—but sometimes. 

"That did not sound like 'sucks,'" I tell him. "Try again!"

We knew when Max was an infant that speech was going to be a challenge, because of the brain damage caused by the stroke he had. Eventually, the neurologist told us that he believed that Max would talk, and  he would sound like a person who was hard of hearing. I'd say that's pretty accurate. I typically understand what he's saying, but not always. Once, when Max and I were standing in line and he kept saying something I couldn't figure out until some guy on the line blurted, "He's saying 'cookie dough.'" 

One of the things no developmental book will tell you is that your child will have the determination of an Olympic athlete. Max is typically game to keep trying to say the word, pick up the object, spear the last piece of steak on the plate with his fork or do whatever he needs to do to work around or overcome his challenges. This time is no different. He keeps saying "suck," and I keep telling him to do it again. I am all for speech therapy anytime, anywhere, and this is turning out to be a super-fun session.

Finally, he says "ucks!" Maybe he can't get that darn "s" but the "k" is coming through loud and clear.  We know from previous experience that Max is capable of saying Bad Words with the letter "k" (see: The ock you milestone.)

I want Max to experience all parts of life, including having the same words that other young adults do to express their mood and feelings and knowing colloquial expressions. And if that means teaching him words and phrases most parents don't teach their children, I am here for it. 

"OK, let's open the window and yell, 'NEW JERSEY SUCKS!'" I say, in the name of further encouraging him.

Max opens the window and yells "OOOH ERSEY UCKS!" The street is empty and anyway, it's unlikely anyone would guess what he is saying. We both crack up. 

Subversive speech therapy, for the win.

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

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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. 

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

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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. 

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.