Tuesday, June 15, 2021

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.

Friday, June 11, 2021

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


What to do if you're new  

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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!


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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.

Friday, May 28, 2021

The Disability Blogger Long Weekend Link-up


What to do if you're new  

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Thursday, May 27, 2021

The last time he sucked his thumb, maybe


Last night was the last time Ben sucked his thumb. Or maybe I'm wrong and it wasn't, though it could be. It's a habit he's had since he was a baby. Several months ago, it stopped. He used to love to suck his thumb, snuggle on the couch with me or Dave and get foot rubs. Now he just gets the foot rubs. 

I was sad when I realized that he'd stopped, and ebullient when he slipped his thumb into his mouth as I was reading to him at bedtime last night. I snapped this pic and showed it to Dave after he'd fallen asleep.

I've loved the thumb sucking because he looks adorable when he does it, and because it's the last vestige of his babyhood. Having two older children has made me seriously aware of how quickly time passes.

Parents are acutely aware of the milestones in our children's lives and, if you're the parent of a child with disabilities, the inchstones, too. But then, there are the little life passages you only realize in hindsight.

When was the last time I picked up Max and Sabrina? I've wondered.  

When was the last time I held them on my lap after a bath, wrapped in a towel? They were especially delicious after baths.

When was the last time I did floor time with them?  

When was the last time Max wore that Lightning McQueen getup he loved?

When was the last time Sabrina wore that Ariel mermaid outfit?

What was the last aquatic swim session I took Max to? 

When was the last time we took them for a ride on a merry-go-round?

When was the last time they sat at our kitchen table and colored?

When was the last time Sabrina told me one of her nonsensical knock-knock jokes

When was the last time they watched Sesame Street? 

When was the last time they both fell asleep in our bed? 

And so on and so on. Those childhood routines, habits and behaviors slip away unnoticed, along with the sweetness and snuggles. Unless you've had children a chunk of years apart. And now you find yourself relishing having a young child again, and getting overly excited when he once again sucks his thumb.

Friday, May 21, 2021

The Disability Blogger Weekend Link-up: ready, set, post!


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Wednesday, May 19, 2021

We are not a fire pit family and we are still pretty great

Like many people, we got a pandemic fire pit last spring. It's a pretty round hammered copper one, and I even bought concrete pavers for it to rest on and a cover to keep out leaves and dirt. It fit nicely in the corner of our backyard by the shed, and a neighbor who was moving gave us some chairs to put around it. Cozy, that it is. 

I think we've used it twice. Maybe three times? I'm not sure. Turns out we are not much of a fire pit family, as much as I'd like to fantasize that we are. Sabrina, Dave and I would happily sit around it and bask in its warmth. Ben, not so much (he's not one to sit in one place for more than 20 seconds). Max, even more not so much: He just doesn't care for it. It did come in handy during Sabrina's Sweet Sixteen in January, though.

I've certainly had plenty of other stuff to ponder throughout the pandemic other than the fact that we are not a fire pit family. Like: We also didn't get a pandemic puppy or even a pandemic goldfish or purchase a pandemic PlayStation5. Which makes me and Dave big old pandemic party poopers, I guess? 

Over the years, I've had the occasional pang of regret about the family that we weren't, especially during Max's early years when we didn't go to restaurants, movies or shows together because Max had sensory issues and couldn't handle the din, noise and hustle and bustle. There was one exception: Manny's Texas Wieners, a greasy-spoon cafe near the house that Max tolerated going as long as we got the table all the way in the back, by the bathroom. A.k.a. fine dining at its best.

While Max grew out of most of his sensory issues, we've never been a family who could hike together. Or do activities like Escape Rooms or game night or puzzles together. Or go shopping together (Max gets bored, unless it's Costco and he and Dave would zoom around trying the samples, womp womp, no more.) Often, we split up to do activities—Max roams around with Dave (his BFF) or Dave will take both boys to yoga at his sister's studio. Or I'll take Ben on a playdate. Or I'll go somewhere with Sabrina and Ben. 

Mostly, I've accepted that we are our own kind of awesome family, cookie-cutter version of togetherness be damned. We have plenty of fun (and I'm not talking about the kajillion hours of TV we've watched this past year). We are a family that likes going to local parks, pools, amusement parks and boardwalks. We get a kick out of finding new sushi restaurants to try. Once in a while, we bike together. As often as possible, we travel—last summer we went RV-ing, which was superfun.

It's been a chilly spring, and the fire pit has been sort of taunting me. I remind myself that it all comes down to the same thing I've learned about raising a child with disabilities:

Life may not be what you imagined, but it can still be great.

Friday, May 14, 2021

The Disability Blogger Weekend Link-up likes you


What to do if you're new  

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Wednesday, May 12, 2021

How I learned to be OK with my child's IEP meetings


This is a guest post by Jane Kim, a writer and mom to a 9-year-old with autism. She works in the field of immigration, and lives with her family in the Philadelphia suburbs. 

We were at 2 hours and 50 minutes, and my legs were going numb. No, I wasn’t running a marathon—I was at an IEP meeting. The intense planning, accountability and bravery involved can feel like doing a 10K. But I was also experiencing another feeling: gratitude, because his team and I had finally reached a mutual understanding.  I choked back tears and thanked them.

I’ve attended three years of IEP meetings for my son, T, in different personas: passive participant, note-taker, hard-liner, solider heading into battle, and on my best days, as co-leader and team player.  The journey has been difficult—I used to take antacids before meetings—but I have finally hit that sweet spot. I attribute it to both the passage of time—and a handful of different things I’ve put into place. 

First, focus on yourself


This year, I wrote a mission statement for myself and set ground rules, too. I kept them in my IEP folder on a sheet of paper that I could pull out and place next to me during meetings (they’ve been virtual). Having it there helped me stay on track and served as a reminder of the ultimate goals of the meeting. 

Mission statement
: With each meeting, for the team to gain a better understanding of T. To focus on his strengths, to address the challenges and to strive for increased independence.

Ground rules: 
Prepare talking points. Accept that T may be different at school than at home. Respect comments and feedback from T’s team. 

Hold the team—and yourself—accountable.

Start by asking the team, “What are my child’s strengths?”
This starts meetings on a positive note and encourages teachers and therapists to see  
how a child’s strengths can help with the challenges that will be discussed. For example, T loves music. If there is a song that can reinforce a difficult concept or behavior he is struggling with, I’ll often turn to YouTube for ideas. One area that was difficult for him was remembering to raise his hand to speak. I found some catchy songs and videos on this topic—one of my favorites can be found here. I’ll also share T’s accomplishments with his team, which instills a sense of pride in them and sets a good tone for the meeting.    



Know when to be assertive and when to speak up 

Most of us know when to speak up, but for those of us that are newer to IEP meetings, here are some reminders: If you don’t understand something, say so. If you don’t agree with something, speak up. If a member of your child’s team says during the meeting that they will look into something and they don’t, follow up. Being assertive is not the same as being argumentative. Over the years, I’ve learned to be candid with my son’s team over a variety of issues: we’ve discussed adjusting his goals to ensure they are appropriately lofty, incorporated personal motivators to achieve more success and cut down on unwanted behavior, and tweaked prompting and prompt fading for increased independence in the classroom (Prompting is essentially a way to remind a child when to do something or teach a child how to do something correctly—for more information, see the helpful chart here.)

The pandemic has posed additional challenges. When it came time for all the kids in his class to resume full-time instruction, I knew it would be an adjustment for T. The first week, there was an incident at recess where T would not give up a toy. I was told by a member of his team “….to review expectations before school so he can hear this language.” T was being blamed for poor discipline and she was unable to see that this was an indication he needed additional support to navigate a newer, bigger recess environment. I spoke up and asked the team to have empathy for T and other students like him, rather than blame. After that conversation, supports were put in place for T to feel more comfortable—and included—at recess.  

Ask, “How can this be achieved?” 


Sometimes, I’ll receive the following feedback: T needs to follow directions better. T needs to respect people’s space. T needs to raise his hand and learn to wait his turn. My response: “Thanks for sharing this information with me. What are your ideas on how T can better learn to do this?” Challenges are going to be discussed, and this is an opportunity for the group to think about solutions together.

Get comfortable with changing course

When T’s school switched to virtual learning, I got a front row seat into his classroom. For writing assignments, I noticed that T was asked to tell the teacher what to write rather than write it himself on paper. My son has struggled with his writing for some time. There’s been progress but sticking with the traditional route of pencil to paper was beginning to affect topic writing, story development and his confidence. Having his teacher write for him created dependence, whereas the goal needed to be independence.

At his last IEP meeting, we decided it was time to try assistive technology. The SnapType app allows you to take a picture of the worksheet/assignment and type your answer rather than write it. He’ll still use pencil and paper, but adding this technology made sense. An added perk was that he also got more comfortable with the keyboard. 

Request progress reports

Mine gives me an understanding of his areas of progress and difficulty while spotting any trends in behavior. Determine a frequency that works; I requested a weekly report, received every Friday and broken down by subject, and his teacher agreed. Weekends are when I’m able better able to digest the information provided, with a clear head. For any parent, progress reports are an opportunity to identify roadblocks and brainstorm different ways to learning. I’ve also asked T’s team to provide activities I think he will enjoy over the weekend to reinforce concepts he may be struggling with at school. Often, I share what I am seeing at home, so the team is aware of his progress.

I can’t say I look forward to IEPs, but getting to OK has been incredible progress for me—and that is reason enough to celebrate. For those of you struggling with this, I hope you can get there too. 

This post is dedicated to A. Ross, OT and L. Nicosia, SLP. Thanks for going the extra mile. 

Photo: Etsy/APolkaDotShop

Monday, May 10, 2021

Elon Musk's autism announcement: Someday, it won't be a big deal to have a disability

Elon Musk's announcement on Saturday Night Live that he has Aspergers made headlines this weekend, not surprisingly. "I'm actually making history tonight as the first person with Asperger's to host SNL," the Tesla CEO said during the monologue, and the audience applauded. "Or at least the first to admit it. So I won't make a lot of eye contact with the cast tonight. But I'm pretty good at running 'human' in emulation mode."


There was immediate backlash on social media. People pointed out that Dan Aykroyd, one of SNL's original cast members, has spoken about his Asperger's diagnosis as a child. Others were concerned about use of the term Asperger's, which was eliminated as a diagnosis in 2013 and folded into the umbrella diagnosis of autism spectrum disorder. Some felt that Musk was perpetuating stereotypes. As Erin Ekins (@QueerlyAutistic) noted on Twitter, "The only 'awareness' that Elon Musk brings about autism is in regards to a certain presentation of autism (white, male, techy, awkward) which is literally the most over-saturated and represented presentation of autism across the media and society."

I understood the reactions. At the same time, I wondered if Musk's announcement could also be good for the autism community—one of the world’s most successful people publicly embracing autism might help soften the stigma. I wondered if that might have been what motivated Musk to speak up.

Most of all, I found myself wishing that it wasn't such a big deal. I've had the same reaction when people with Down syndrome, cerebral palsy or autism are in the news for being crowned prom king or queen or homecoming queen, for modeling in ad campaigns or appearing on magazine covers or for any achievement that typically wouldn't make headlines...except it did because a person with disabilities had achieved it. 

Last week, I got an email with the subject line "Disability isn't the opposite of ability." Yes, I thought: THIS.

I dream of the day when disability is perfectly ordinary and society truly understands that we are a world filled with people of all abilities—and that's a wonderful thing. 


I yearn for a time when people like my boy Max will not get second glances or glares or any of the extra attention that comes with having a disability.

I yearn for the day when people with disabilities will be such an accepted part of our society that they won't feel the need to come out. 

Friday, May 7, 2021

The Disability Blogger Weekend Linkup is good to go


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Like this: Mom for the win, every single day

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Thursday, May 6, 2021

Mom for the win, every single day

I pulled off a major feat of repair last night. The garbage disposal had inexplicably stopped working and resetting the power button hadn't done the trick. Given that nobody in the house had noticed or cared that we no longer had a functioning garbage disposal, I had added it to my list of One Million Things To Do. But I had some dinner remains that I wanted to grind up, and I got it into my head that I was going to fix it. 

I pulled out the various bottles of cleaner beneath the sink, sat down on the floor and scoured  YouTube. I discovered that there was a good chance a thingie called an "inner flywheel" was jammed. And I had better not stick my hand down the garbage disposal! Which I had, of course, done More googling ensued to figure out what an "inner flywheel" was. Also, I needed an "Allen wrench" thingie to loosen up the "inner flywheel" thingie. 

Our junk drawer is either the most messiest part of our house or the most magical, depending on the day. I dug through it and unearthed a mini metal rod that had a bent end, kind of like the Allen wrench. It was in a plastic baggie with a stickie I'd written that said, "If Ben ever gets stuck inside the bathroom, use this to unlock the door." I shined a flashlight on the underside of the disposal, spotted a center hole and tried to move the rod inside it except it was too thin. So I headed back to the junk drawer and that's when I found a legit Allen wrench thingie, complete with the note I'd also so wisely scrawled on a stickie: "Garbage disposal wrench." 

I mean. Who in my family would ever think to actually save the wrench that came with the garbage disposal, actually store it in a bag, and actually put it in a place that made sense? 

In a word: MEEEEEEEEEEEEEEEEEEEEE!

Already that day, I had scored dozens of unrecognized, unacknowledged, unappreciated and unsung mom wins including:

• Once again, I SOMEHOW REMEMBERED TO FILL OUT THE COVID FORMS FOR SCHOOL DURING THE USUAL MORNING CHAOS.
• We ran out of Worcestershire sauce BUT I HAD AN EXTRA BOTTLE IN THE CABINET. Along with backup jars of other Important Condiments like Nutella.  
• Nobody could find a left soccer cleat UNTIL I DUG IT OUT OF THE CLOSET.
• There was a medical form for one of my children that was supposed to be dropped off at the doctor's office by Someone in My House because I had delegated it to him owing to my list of One Million Things To Do and I PESTERED THAT SOMEONE UNTIL HE DID IT.
• There was a clear sticky mess all over the floor in front of our fridge, likely apple juice, that nobody noticed—there were actual footprints in it and how can you step on a sticky mess and ignore it but anyhoo—AND I CLEANED IT ALL UP, INCLUDING THE SATELLITE STICKY SPOTS THAT HAD GOTTEN IN OTHER PARTS OF THE KITCHEN.
• Also, our glass table outside had turned a not-lovely shade of green because of the pollen—there was an actual outline where someone had put a book on it and how can you just put a book on that stuff and ignore it but anyhoo— I CLEANED AND SNEEZED AND CLEANED AND SNEEZED. 
• As the unofficial remote control first responder in our home, I RESCUED THE APPLE TV REMOTE FROM UNDER THE SOFA CUSHION. 
• I noticed one of the bathroom hand towels was full of mystery grime AND I PUT A NEW ONE IN, SPARING MY FAMILY FROM MYSTERY GRIME. 
• There was a whole pile of mismatched socks lying on a chest in Max's room that nobody wanted to deal with AND I MATCHED THEM ALL UP.
• Ben is obsessed with the show Miraculous Ladybug and unfortunately the dolls break within about five minutes of getting them and I know this because we are on our fifth set and Cat Noir's legs fell off and  I CLEVERLY FIGURED OUT HOW TO REATTACH THEM WITH RUBBER BANDS. 
• While I was in the backyard planting grass seed for the spots that had gotten destroyed by outdoor toys and playsets, I noticed a tall branch randomly sticking out from a rose brush AND I WENT TO THE GARAGE AND GRABBED OUR CUTTING SHEARS AND CUT THE BRANCH DOWN, THEREBY RESTORING FENG SHUI TO OUR YARD AND ENSURING THAT EVERYONE WOULD HAVE A ZEN SPRING, AND I EVEN WIPED DOWN THE CUTTING SHEARS SO THEY WOULD NOT RUST. Amazing, amIright?
• In a trifecta of household negligence, three bathrooms were completely out of t.p. AND I REPLACED ALL THE T.P. (You may have read about my talent for noticing we are out of t.p. several years ago here.)
• Ben's preschool had asked for photos of him over the years to share for his graduation ceremony and I DUG THROUGH THREE YEARS OF PHOTOS OF BEN AND FOUND GREAT ONES.
• The lovely pink begonias I put into the planter on our front porch that nobody waters except for me were wilting AND I REMEMBERED TO DO IT AND SO WHAT IF IT WAS 1:05 A.M. CAUSE I'M PRETTY SURE NOBODY SAW ME IN MY NIGHTGOWN WITH A WATERING CAN ON OUR FRONT PORCH.

Mom win win win win win win win win win win win win win etc.

So many mom wins every single day, every single month, every single week, every single year. And there I was with my Allen wrench thingie, scoring yet another. I lay down on the floor, shined the flashlight on the disposal and inserted the wrench. This time it caught, and after wiggling it back and forth a few times I felt something come unstuck. When I jumped up,  turned on the garbage disposal and heard that sweet whirrrrrrr, I said "YEAH!" out loud to the empty kitchen.

As I was putting the bottles away beneath the sink, Dave walked in. And I just had to give credit where it was due. 

"Honey, I fixed the garbage disposal!" I proclaimed. 

"You did? Wow!" he said with not as much enthusiasm and appreciation as I felt I deserved. 

I pressed on: "Would you believe I actually saved the wrench it came?!"  

"Wow!" he said again. "Amazing!" And then he went off in search of a seltzer. 

And I realized that in his mind, I had simply fixed the garbage disposal and in my mind, fixing the garbage disposal was the equivalent of sending astronauts to outer space because that's pretty much the level of credit I deserve for everything I do. 

So he got his seltzer and I put away the bottles under the sink and tucked that Allen wrench thingie into the little plastic bag and socked it away in the junk drawer, where it will remain until the next garbage disposal mom win. 

The end.*

*Not really.

Wednesday, May 5, 2021

Oh, yes, our children are fighters

We found out this weekend that a young man with medical complexities who we've known for years  passed away on Friday. Josh's parents, Erica and Steven, had filled his life with family fun, activities, Friendship Circle events, trips to Disney World and all the love and devotion. 

During the virtual funeral service, Steven asked people to picture what a fighter would look like. He noted that he imagined we might have been thinking of someone who likes to shout and argue. But, no: Josh was a fighter. He had endured many, many surgeries in his 21 years, persevering with spirit and tenacity.

I've been thinking about Josh a lot these last few days, once when Max was climbing up our front porch stairs. He was grasping the hand rail with all his might, and struggling to find his footing on that first step. He'd put his weight down on it, get wobbly, then step back. Start, then step back. Start, then step back. Just as I was about to lend a hand, he lifted himself onto the step and motored on up. 

Obviously, people with disabilities navigate life the best that they can—they aren't heroic or inspirational for doing that. But it takes a certain inner force to constantly surmount obstacles, be they physical ones or 
the biases people have. To endure surgery after surgery and medical intervention after medical intervention, as Josh did. To maintain your sense of humor, as Josh did. I have a vivid memory of him from years ago. I'd taken Max to an event at a museum, and by the time we headed out, Max was grouchy. We found Josh waiting outside with his mother, his dad had gone to get the car. Max stood by Josh's wheelchair and I don't remember exactly what went on between the two of them but Max cracked up. In the car he said, "Josh is funny!"  

Our children are fighters isn't something that parents of children with disabilities say to reassure ourselves about the challenges they face. We know it. We see it. We live it with them. Our children have shown us strengths that we ourselves have never had and superpowers we never could have imagined. They are heavyweight champions of tenacity. They are everyday warriors. 

Rest in peace and power, Josh. Your strength and spirit will forever stay with us. 

Friday, April 30, 2021

The Disability Blogger Weekend Link-up: Go on, post!


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Thursday, April 29, 2021

Sometimes, independence comes in growth spurts


Developmental spurts have never been a thing in Max's life. Progress has happened bit by beautiful bit, hard-won all of it. A step here, a hand movement there. A consonant uttered, a word read. An understanding gleaned, a lesson learned. But lately, Max's has been having an independence growth spurt, and it's awesome.

A couple weeks ago, I was in my attic working when I heard Max arguing with our sitter. She was going to assist him with showering, only he wasn't having it. I walked downstairs to see what was wrong. It turns out that Max wanted to take off his own pants, and he was agitated because the sitter hadn't caught on. I explained to her that he wanted to do it himself.

That was the start of Max's indie streak. When we eat out, he has insisted on ordering his own food. When he and Dave went to Home Depot this weekend to make a return, Max grabbed the receipt from David's hand and handed it to the cashier. He wants to take walks alone. He wants to know days ahead of time what we're doing on the weekend, and he makes us stick to it

Max has always been determined and, uh, opinionated, so he's totally in character. Still, the go-it-alone drive is astounding. Not just because my boy wants to spread his wings and fly, but because he is capable of breaking out of his cocoon of comfort. Dependency has been a key part of his existence, and the DIY mind shift is major. 

During Max's early years, all of my hopes centered around whether and when he'd be able to do x and x. These days, my greatest hopes center around Max making his own way in this world. Dave and I and Team Max are there to provide the support. But Max is leading his own independence charge, and we're awed by him and so proud.

This summer, one of Dave's friends is getting married in Los Angeles. Max was texting with my sister the other night and he informed her that will be going. As is the Jewish tradition, he plans to help lift Jeff up on a chair as the crowd dances around him—just like Jeff did for Max at his bar mitzvah. 

You go, Max. You. Go!!!

Friday, April 23, 2021

The Disability Blogger Weekend Link-up is here for you


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Thursday, April 22, 2021

The woman he wants to marry

Max told Dave last week that he would like to buy a wedding band. He pointed to Dave's, then informed him that it was for his Aunt Emily because he loves her very much. Dave and I have since explained several times that you can't marry your aunt, but Max won't listen. Meanwhile, Emily's husband jokingly agreed, which hasn't helped. 

I've had a lot of Thoughts and Feelings. 

Emily and Max have gotten especially close during the pandemic because she's been giving him yoga lessons in her studio every Saturday morning. It's one of the only places we've taken him this past year, and it it's been a great escape. Yoga relaxes him (a couple of times, he's dozed off), and Em is a warm and patient teacher. Sometimes Sabrina or Ben join in but mainly, it's Max's time.

I can understand Max's urge to marry his aunt, because she's awesome. It's also made me ponder ways I can expand Max's social network so he meets more people his age, although that is particularly challenging these days. After-school social events are indefinitely held. And it's not like Max was making new friends outside of school even before the pandemic started.

At times, I've struggled with the friendship and romance blank spots in Max's life. He is such a friendly, cheerful, charming person. He has so much love to give. But then, I have to force myself to consider the fact these are "blank spots" as view them—Max seems perfectly content with life as he knows it. The ache I felt in my heart when Dave told me that Max wanted to marry his aunt sprang from a deep-rooted expectation that my kids would grow up, fall in love and have a family of their own. It's a supposition shaped by my own upbringing, and a desire that comes from my own happy experiences with love. The thing is, they are mine, and not Max's. And it's hard to separate the two. 

As parents, we want our children to thrive, to experience all the joy, to live. Sometimes, though, we have to take a wrench to our hearts and minds and loosen up our perceptions about what that means. We need to recognize when we projecting our own ideas of happiness onto them and accept that every child—disabled or not—finds their own bliss in this world. 

Right now, Max has this notion he can marry his aunt, and I have this sadness about his relationship status. Clearly, there are things we both need to come to terms with.

Friday, April 16, 2021

The Disability Blogger Weekend Linkup is open for business


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Children and teens with disabilities, re-entry and the extra empathy they'll need

via Better To Be Different/Facebook

An awesome story is making the cyber rounds about a man in England who, upon encountering a 5-year-old with autism having a tantrum, proceeded to lie down on the pavement next to him, strike up a conversation and help him calm down. Mom Natalie Fernando told the story in a Facebook post that has gone viral

You might recall a similar story from a couple of years ago in which a Universal Orlando Resort employee did the same when an autistic child who lost it while waiting for a ride. And then there was that great story about officers calming an upset autistic man in the ER of a Chicago hospital by singing to him.

The rest of the world may see these people as saints, but to many parents of children with disabilities, they are both heroes and the exception. Natalie recounted that before the help from a stranger, "only minutes before Rudy and I were being tutted at stared at frowned at by a woman and a man with 2-yr-old in a pram trying to sleep despite me apologizing for my son's loud noises." 

How many times have we read those stories—people getting in a snit because a person with disabilities was causing a so-called "disturbance." The family kicked out of a restaurant owing to their four-year-old with apraxia whose speech was unclear. Patrons at a restaurant who moved away from a child with Down syndrome (and that waiter who stood up for him). If you're the parent of a child with special needs, you have likely contended with the disgust, discrimination and intolerance in some form or another. 

In the upcoming months, we are going to enter an unprecedented time in this world: re-entry. As a growing number of people are fully vaccinated, families will increasingly be leaving the safety of their homes and venturing out again to stores, restaurants and other public places. Children are returning to school. This is going to be especially challenging for many kids and teens with special needs for whom a change in routine is unsettling and distressing. It can be hard on those with sensory needs who aren't comfortable wearing masks. It might be upsetting or even scary for children to see a new world in which the majority of people are masked, lines may be longer and some of their favorite restaurants closed due to financial challenges from the pandemic. They may also harbor fears about the coronavirus.

April may be Autism Acceptance Month but for the indefinite future, we are going to need people to have more patience, empathy, understanding. consideration and kindness than ever. Nobody's expecting everyone to lie down on the floor but, at the very least, to not tsk-tsk at children who are having meltdowns or glare at their parents or caregivers. 

As Natalie wrote on her Facebook page, "If you see a parent struggling, maybe take the time to say 'Are you OK?', don't judge the parenting, try not to judge the child, just be kind.... Sometimes it just takes a moment of kindness from a complete stranger to completely change your day."

Choose kindness, people. Or at the very least, choose to stay silent.

Wednesday, April 14, 2021

Yet another dubious milestone. Yay?


Here's my boy, seen through our upstairs window, about to take a walk. I was headed into the shower and banged on the window to say hello. In return, I got his new favorite gesture. To anyone else, it may look like he is flashing a sideways peace sign. But, nope. Max was giving me the finger, yet another dubious milestone in his life.

It started when Max and I were having a standoff in the kitchen about something. He held out two fingers at me and stormed into another room. Hoooooooooo, boy. It was just a year ago that we'd "celebrated" the ock you milestone

Max knew exactly what he was doing. In fact, so did Ben. 

"Max can't hold up his middle finger so he holds up two," Ben explained, matter-of-factly. 

OK, then.  

Being rebellious is part of a young adult's job description. Max doesn't have as many ways to bust out as his peers do—he's not going to be staying out too late with friends, sneak-ordering stuff on my Amazon account or driving the car when he shouldn't. Still, he's doing pretty well:

Max: "NO!!! I AM NOT GOING TO SLEEP AT 10! AT 12!"
Max: "I want to walk to the fire station ALONE!"
Max: "Dinner is DISGUSTING! I'm not eating it!"

How typical is that?!

But Max is a sweetie at heart, and even when he's irascible, it doesn't last long and he does not hold a grudge. Sometimes when he gives me the fingers, he has this giant grin on his face. 

Of course, I have told him it is not OK. Of course, he does it anyway.

Denial and grace are my best defense. I sweetly flash the peace sign at him and say "Peace to you, too!" 

Friday, April 9, 2021

The Disability Blogger Weekend Link-up: Come on in!


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Wednesday, April 7, 2021

An acceptance letter for an amazing 18-year-old not going to college

April 7, 2021

Dear Max,

Congratulations! On behalf of the Office of Admissions (aka your parents), it is with great pleasure that we acknowledge your admission to the School of Life. Your exemplary academic record, developmental accomplishments and personal strengths have been thoroughly reviewed, and we enthusiastically welcome you.

As we continue to hear from friends about the colleges their teens have gotten into, as we see the exuberant Facebook and Instagram posts with grinning young adults holding up acceptance letters and wearing sweatshirts from their intended universities, we are thinking of you. At 18 years old, next year you will be in the same school that you have been in for the past four years, as your program continues until age 21.

But even if you are not off to college next year, even if you are unaware that you are missing a typical rite of passage, you deserve praise and kudos, too. As parents everywhere celebrate their high school seniors, we would like to take this opportunity to openly boast, toast and revel in you.

Your accomplishments and achievements in the face of challenges have convinced everyone who knows you that you have the brightness, determination and perseverance to flourish in the School of Life. Although there is no standardized test for emotional intelligence, if there were you'd score through the roof. Although there is no ranking for qualities like charm, cheer, affability and good humor, if there were, you would be valedictorian—your scores for the SAT (Spirit Aptitude Test) are remarkable. These traits will get you everywhere, and continue to ensure your success in the School of Life. 

We would also like to commend you for opening up a whole new world to us and everyone who knows you. When we first learned that we would have a child with disabilities, we were so fearful of what the future held for you. But you have been a trailblazer in our mindsets, showing us the ability in disability and that there is no "right" way of doing things. You have proven top experts wrong, including the speech therapist who felt that your potential was tapped out at the age of 12 and the neonatologist who examined two-month-old you and announced, "His future looks ominous." 

Well, look at you now, Max. LOOK. AT. YOU. NOW. 

We know that following a different path is just that—not a lesser path, a different path. One that can be equally wonderful as the traditional one. And may we digress and say: Typical is overrated. 

You have been quite the innovator. You were literally the first person at school years ago to try an iPad and a speech app, and your technological prowess has exended to texting us from your phone and Apple watch to ask about moving to Los Angeles and whether we can go out for a steak dinner. You have mastered emoji. You have also aced some unique milestones, including the "ock you" one and cancelling therapy appointments on your own without letting us know. Ahem.

We have been duly impressed by your passion projects, including your plot to get us to move to warm and sunny Los Angeles, to become a firefighter, to set the world record for watching fire truck videos on YouTube, to paint our house fire-engine red (sorry, not happening), to relentlessly tease your little brother but also make sure he doesn't do stupid things like jump off the deck railing and to eat steak and sushi as often as possible.

While we, the committee, may admittedly lack objectivity, your admission is also based on recommendations from many, many teachers and therapists. The elementary-school teacher who called you "Smart Guy" to the point where you started referring to yourself that way. The music therapist you never fail to delight when the two of you make up songs about moving to Los Angeles. The therapists who, since you were a tot, have been awed by your fierceness—from the day you commando crawled, dragging your body across the floor when your little arms and knees were not yet able to hold you up to your ever-evolving progress for articulating words. The IEP meetings filled with phrases like "He is the mayor of the school!" and "I wish we could package what he has" and "You don't have anything to worry about." The neurologist we met with after your stem-cell infusion at Duke University who said, "I can see the light in his eyes."

Perhaps you will still go to college. Among many things, you have taught us that you never can tell what the future holds, and sometimes that's a very good thing. Your capabilities are great, limited only by stereotypes, dated perceptions and inflexibility. You have become an admirable advocate for yourself. Your independence continues to flourish, even if the committee member known as your mother does get a wee bit nervous at times about that.

In making our admission decision to the School of Life, we firmly believe that you will continue to make important contributions in the upcoming years—to your family, to your school, to your community and beyond. 

You should be very proud of your accomplishments, Max. We, the committee, certainly are.

We will be in touch about next steps. (Although they do not include moving to Los Angeles.)

With love and great respect,

The School of Life Office of Admissions  
(Mommy and Daddy)

Friday, April 2, 2021

The Disability Blogger Weekend Link-up is up and at 'em


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Thursday, April 1, 2021

Max is digging '70s music and other stuff you maybe never expected about your child

Weeks ago, Dave and Max were driving around and the Electric Lights Orchestra song Livin' Thing came on. For the uninitiated, ELO was a hot '70s British band, and yes, Dave likes to drive around listening to '70s music. He sang the song out loud, and Max was hooked. 

Ever since, Max has insisted on playing the song regularly. He watches groovy YouTube videos of it. He asked his music therapy teacher to play it on her guitar so he could sing it with her. It's gotten to the point where Dave took everyone out for ice-cream a few weeks ago and when they arrived home Ben and Sabrina leaped out of the car and simultaneously screeched, "WE ARE NOT LISTENING TO THAT SONG ANYMORE!"


Dave is tickled that Max is into music that he loves. It's one really fun part about having children: introducing them to the same stuff you liked when you were young. That pained me when Max was little, because it seemed like we were all missing out. Max and Dave didn't get to play sports the way dads and other boys did. I couldn't take Max to movies or shows because of sensory overload. We couldn't play board games with him (he didn't have the attention span), give him candy (he couldn't chew it), or teach him how to climb the money bars at the park.

Eventually, things shifted, including our mindsets. Maybe there was stuff from our own childhoods that Max couldn't experience, but then, this was a kid who did not lack for interests or passions. He adored the color purple, The Wiggles, DVDs about trains and planes, this one toy that involved pop-up balls, and the list went on. He relished school, his teachers and his classmates. He found his own unique joys, from going through car washes to visiting fire stations.  

The other shift that happened was: Max. As his physical and cognitive skills evolved, his world opened up. He learned to ride an adaptive bicycle and cruised around our neighborhood like any kid. He played on an adaptive softball team. He had adaptive bowling birthday parties. His sensory issues dwindled and he grew to love going to movies and shows. Traveling, too, one of my longtime passions. When we went to London two years ago, Max helped me pick out places to visit and of course it didn't turn out as planned but it was still a blast. 

In recent years, he and Dave have become the best of eating buddies, eager to experience new restaurants together and explore new neighborhoods while they're at it. Max is a sushi eating machine, which isn't cheap but is a thrill because it's Dave's favorite food.  

Max's life hasn't been lacking because of his disabilities—it's life as he knows it, and it's pretty darn great. It just took a while for us to understand that. 

It's a livin' thing.

Monday, March 29, 2021

He is so over my parental anxiety

"Max, you know to look both ways when you cross the street, right?"

Max sat in the passenger seat and stared stonily ahead, ignoring me. At his request, I was driving him to the fire station—his favorite place in town—so he could walk home from there. He'd done it once before, in October. There's a big intersection he has to cross on the way home, and it worries me. 

"C'mon, Max, answer me. You're going to look both ways, right?"

Max stared at me.

"Si!" he said.

I burst out laughing, and so did he.

"OK, Max, just be really careful about looking for cars when you cross that big street.

He didn't answer. 

Letting your adult child with disabilities grow into independence is partly a matter of their maturity, and partly a matter of your own. Max is sensible. He knows his way around the neighborhood. In fact, neighbors look out for him. Still, parental anxiety gets the best of me, especially my concern that he could trip and fall. Max is steady on his feet but it happens on occasion, when pavement is uneven.

"Hey, Max, what's your address?

 Max gave me another look.

"Los Angeles!" he said.

Again, I cracked up. He was mocking my anxiety, and really, who could blame him? 

I talked a little bit more about how cars sometimes speed through that intersection as he pretended not to listen, though I knew he was. I let him out of the car at the fire station, waved goodbye, took off and watched him IN my rearview mirror until I couldn't see him anymore.

A half hour went by. Forty-five minutes. I called his Apple watch; no response. I was about to get in the car when he showed up at our doorstep. He'd taken the long way home.

"Mommy! I want to take another walk!" he said after he used the bathroom.

"OK, see you soon," I said. 

I watched him head down our front steps, and I tried to let go.

Friday, March 26, 2021

The Disability Blogger Weekend Link-up: where did the week go?!


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Saturday, March 20, 2021

The Disability Blogger Weekend Link-up—spring-is-here edition


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Wednesday, March 17, 2021

The new normal and why we'll handle it just fine

I spotted crocus poking out of the ground in our front yard this weekend, and I felt even more excited than usual to see them. Over the past year, I have been thrilled by the familiar and regular parts of life:walks at sunset, marshmallow pie at Thanksgiving, Halloween costumes, apple picking in the fall, dunks in the pool in summer. All still the same, despite the pandemic. 

I've craved normal, as we all have. I can't wait for a return to full school days, hanging with friends and family, hugging friends and family, vacations...and just roaming the aisles of Trader Joe's. With the vaccine making the rounds, normal is on the horizon. At the same time, I keep wondering just what a return to normal will feel like.  

Last weekend we went out to dinner for the first time in forever and as we drove home in the dark it seemed as if we were out on an adventure instead of cruising down the same old highway we've traveled for 18 years. It was both weird and wonderful. This week, I stepped inside a library for the first time in a year, took in the plexiglass partitions and the markers set up on the floor to keep people feet six feet apart and marveled that it hadn't felt like 12 months had passed. Weird and wonderful. 

My friend Wendy and I have been talking about the baby steps we'll take to ease back into public life—a trip to the store here, a meet-up with someone there. A lot of us have some form of pandemic PTSD. Those of us who have been quarantining will need to convince ourselves that it's OK to emerge from our cocoons, safety measures in place. While I'm not thrilled about wearing a mask indefinitely or avoiding parties and large gatherings, that's what it's going to take to keep protecting ourselves and others from Covid-19. And any state that says otherwise is defying the guidance issued by the Centers for Disease Control and Prevention, and putting its citizens at risk. 

Even as all this whirls around my mind, I reassure myself that as the parent of a child with special needs, I have experience in adapting to a new normal. Life after Max was born was anxiety-provoking, as things can be when you don't know what to expect. Nothing felt secure or certain. Nothing felt like it "should." But as time passed, I adjusted. Letting go of long-held perceptions let me accept reality—and appreciate and enjoy my boy for who he was. Not what I expected, not what I'd been used to, but: a new kind of normal. His normal. Our normal. 

This time around is a whole other experience, obviously, but there will be a similar shifting of gears and acceptance of a new normal. While parents of children with disabilities have had to contend with extra struggles during the pandemic, I think we are well equipped for re-eentry. Because as we are well aware, even if life as we once knew it now feels different, it can still be great. 

Monday, March 15, 2021

Distraction is the answer to parent sanity

Since Max was a kid, he's had varying passions—spaghetti, the color purple, Lightning McQueen, car washes, firefighters. Los Angeles is his most recent one, and we're going on a few years now. He is hell bent on moving there, as he reminds us often. And by often I mean every hour on the hour. He'll tell us that, he'll text it, he'll stand in our entry and weep because it's chilly outside and it's 80 degrees and L.A., as has happened recently. 

Max is old enough and bright enough to understand reason. But choosing to accept reason, well, not so much. He wants what he wants. (Who doesn't?!) And he is very, very stubborn. And he perseverates. Over the years, we have found that extended discussions involving said fantasies are the easiest way to keep him calm. The thing is, Max is 18 years old and I don't think it's fair or right to tell him that yes, he is definitely going to move to Los Angeles, what he'd like to hear. 

I have found ways around this by saying things like, "Oh, yes, I totally get wanting to move to where it is warm all the time!" and "You never know, someday you could live in Los Angeles!" I have also found that when Max keeps repeating "Los Angeles is my home," it helps to shift the focus of the discussion. It gets really tiring to keep talking about Los Angeles. No offense, Los Angeles. 

"Ohhh, yes, Los Angeles has great steak restaurants! What do you want for dinner tonight? Maybe we can grill steak!"  

"Los Angeles is great! It's fun to travel and I miss it. You know, I want to go to Hawaii when we are traveling again. Would you like to go to Hawaii? It's warm there!" 

"Los Angeles is nice. I think I'll plant some nice flowers in a few weeks, when it's warm. Max, spring is coming up! Do you know what day it is?" 

We all deserve our fantasies. We also all deserve some peace.

Distraction has come in handy for all my children over the years, but continues to be the most helpful way of managing Max's tendencies to perseverate. We got into a whole other topic the other day when we ended up discussing middle names over dinner. He asked about Benjamin's (Spencer). And he got it into his head that Ben's middle name is better than his (Grant). 

"I want a new name!" he announced. 

"I don't think you could have the same one as Ben," I said.

"I CAN!" he announced. 

I guess technically, he could. 

"So would you like your new name to be?" I asked.

"Fireman Max Spencer," he said. 

I pointed out that we already referred to him as Fireman Max. And then, I asked if he wanted to bring some treats by to our local fire department for Easter.

Distraction for the win. 



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