Friday, December 13, 2019

The Disability Blogger Weekend Link-up: let's toast your 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: 'Twas The Night Before Christmas: Special Needs Edition

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.

Wednesday, December 11, 2019

Good times at the pediatrician's office


Max was excited for his annual checkup at the other day because he wanted to tell our longtime pediatrician, Dr. G., about his plans to move to Los Angeles. Max sure has come a loooong way from those days he'd melt down in the waiting room.

After taking Max's vitals (he is exceptionally vital!), the nurse handed me a form about well-being that typically teens fill out on their own. After she left the room, Max and I decided to do it together. You had to reply not at all/several days/more than half the days/nearly every day to a series of problems.

Problem: Little interest or little pleasure in doing things.
Reality: It's impossible to keep Max at home on weekends—he wants to be out there constantly, "galavanting" as Dave likes to say. 
Me: "Max, do you enjoy doing different things?
Max, enthusiastically: "YEAH!"

Problem: Feeling down / depressed / hopeless
Reality: Max is one of the happier people on this planet.
Me: "Max, do you ever feel sad?"
Max: "Yes!"
Me: "When?"
Max: "Because I can't move to Los Angeles!"
He cracks up.

Problem: Troubling falling sleep / staying asleep / sleeping
Reality: Max falls asleep basically as soon as his head hits the pillow and doesn't wake up till about nine hours later.
Me: "Max, do you sleep OK?"
Max: "OHHHHHH YES!"

Problem: Poor appetite / overeating
Reality: Max is a skinny boy who counts eating among his favorite activities. 
Me: "Max, do you love to eat?"
Max: "STEAK!"

Problem: Feeling bad about yourself / feeling that you are a failure
Reality: I honestly wasn't totally sure about this one. I mean, Max has told me that he doesn't find having CP challenging. And he's generally pretty confident and not easily put off when he can't do stuff. Still, Max has an inner life I am not fully privy to.
Me: "Max, are you happy with who you are?"
Max: "Huh?"
Me: "Are you happy with being Max?"
Max: "Fireman Max! Yes!"

Problem: Do you have trouble concentrating on things such as reading the newspaper or watching television
Reality: HA HA HA HA HA. Max could sit on our couch and watch YouTube videos of fire trucks all day long.
Me: "Max, do you watch a lot of fire truck videos?"
Max: "YES!"

Problem: Moving or speaking so slowly that other people could have noticed
Reality: Um, cerebral palsy?
Skip.

Problem: Thinking that you would be better off dead / thinking that you want to hurt yourself in some way.
Reality: Um, Max? But I tried:
Me: "Max, are you happy to be alive?"
Max: "I want to live in Los Angeles!"
Skip!

We moved on to the flip side of the form, which turned out to be even more LOL-y.

"During the past 12 months, did you drink any alcohol?"
Reality: Dave gave Max a sip of beer this summer and Max was all, "Ewwwww!" 
Me: "Max, do you drink wine or beer?"
Max: [Laughs uproariously.]

"Have you smoked any marijuana or hashish?"
Reality: Max does not know what this stuff is.
Me: "Max do you do drugs?"
Max: Cocks his head to one side and gives me a look.

Now we are both cracking up. This screening test is not exactly geared toward a teen like Max, who lives a rather innocent existence. A more appropriate question for him would be: Do you ever drink milk to excess? Yes, he does.

After we finished the form and were waiting around for the doctor, I found the video of Last Christmas on YouTube. Max is obsessed with that song, which he is performing at his school's holiday show this Friday. So I put it on and we both sang along at the top of our lungs and that's exactly what we were doing when the doctor walked in.

The exam went well, making it pretty much the best doctor's appointment I'd ever been to. Probably Max, too.

Tuesday, December 10, 2019

This is seventeen


Seventeen is loving adventures, big and small—going to new restaurants, visiting new cities, seeing shows, whatever. You used to fear going to the mall, and now we can't keep you at home.

Seventeen is being responsible about doing your homework and taking your meds but not so much about going to sleep at a reasonable hour.

Seventeen is mastering your own version of the eye roll: head cocked to one side, chin out, one arm tapping a leg.

Seventeen is being a caring and doting brother, but also racing with Ben to be the first to walk in the door anytime we go somewhere together.

Seventeen is announcing "Bad driver!" when someone makes dubious moves on the road, including your own parents.

Seventeen is getting excited about school dances, programs, sports and everything social.

Seventeen is feeling firmly about moving to Los Angeles, so much so that you refuse to call your actual house your home.

Seventeen is wearing a Los Angeles baseball cap everywhere, turned to the side.

Seventeen is the freedom of being able to send text messages from your watch.


Seventeen is getting up by yourself in the morning, walking down the stairs, turning on the TV and chilling by yourself.

Seventeen is being a great reader and proud of it.

Seventeen is advocating for yourself, like when you decided a few months ago that you didn't want the knee-high orthotics, and loving the new shoe inserts.

Seventeen is telling your parents they look nice when they get dressed up but also pointing out when wear the same shirt two days in a row.

Seventeen is being obsessed with eating, especially steak. We never appreciated how cheaply we got off during your mac 'n cheese phase.

Seventeen is texting your parents when they're out to dinner to see how the food is.


Seventeen is having a conversation in the car ride with your mom about your hopes and dreams. (Especially: Los Angeles.)

Seventeen is knowing when you need a hand and asking for it.

Seventeen is making sure your sister gets out the door on time in the morning: "GO! NOW!"

Seventeen is taking walks by yourself around the neighborhood.

Seventeen is remembering stuff your mom spaced out on—say, your evening basketball event—and being pretty darn triumphant about it.


Seventeen is still loving fire stations and insisting on being called "Fireman Max" but no longer demanding that nurses at doctors' offices call you that when they summons you into the exam room.

Seventeen is insisting on going to movies by yourself although on occasion letting Daddy or me accompany you.

Seventeen is getting very excited when someone mentions London or other trips you've taken and happily talking about stuff you did there, like visiting fire stations and eating steak.

Seventeen is telling us that you want to learn to drive and we will find a way because we always do.

Seventeen is proving those gloomy, doom-y NICU doctors wrong every single day.

Seventeen is you, today. Happy Birthday to a young man full of smarts, personality, curiosity, sweetness and sunshine. We love you so, so much, Max.

Monday, December 9, 2019

A restaurant opens a sensory-friendly dining room


Beanbag chairs, bubble machines, sensory games on the walls, dim lighting: Sounds like a haven at a school for children with special needs, right? Nope. It's a sensory-friendly dining room that opened last week at the Riv's Tom River Hub restaurant in New Jersey. If you have a child with sensory issues, you know just how breakthrough this is.

The idea was inspired, as these ideas often are, by the parent of a child with autism. As Tony Rivoli was in the early stages of building his bar and restaurant, Monica Hmielewski—his daughter and co-proprietor—came by with her six-year-old, Chase, who has autism. He wandered into a small room for private parties, and she noted how calm he was in the dark, quiet, cozy setting. Boom.

The 45-seat-room, dubbed "Chase's Friends Zone," has a private entrance and exit. The menu includes gluten-free options. All servers were sensory certified by KultureCity, a nonprofit that specializes in inclusion for people with autism. The restaurant plans to hire people on the spectrum, and to set up a fund to benefit individuals with autism funded by 20 percent of proceeds from the dining room. There will be special events there as well, including bingo nights, paint parties and appearances from music therapist Jammin Jenn, who's worked with my Max and is pure awesome.

"It's hard sometimes going out to eat and doing things that typical families are able to do without even thinking about it," Monica told NJ Advance Media.  Ohhhhh, yes. When Max was little, he'd run screeching out of restaurants because the crowds and din overwhelmed him. Going out to eat wasn't fun for any of us. Eventually, an iPad and headphones helped. As he matured, his sensory challenges subsided.

While restaurants have certainly accommodated our requests over the years to be seated in a quiet area, ideally in a corner (which is most comforting to Max), I've never been to one that offers sensory-friendly anything, let alone a dedicated dining area. How amazing it would be if more restaurants set up sensory play areas or made it clear, on signs at the restaurant or messages on their website, that they're happy to do what they can to make a place more welcoming to children with sensory needs. More restaurants could certainly offer up comfort items, as a couple of California restaurants do through the nonprofit Anova;  their Sensory Friendly Kits included noise reduction headphones, a weighted lap pad and sensory-friendly toys.

Even just a bowlful of ear plugs at the hostess section, right next to the mints, would be welcome—and send a much-needed message. Yes, children with autism and sensory needs, you are welcome here.

Photo: screenshot/NBC 10 video

Friday, December 6, 2019

The Disability Blogger Weekend Link-Up: happppy posting!


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: Great gifts for kids and teens with disabilities 2019: holiday gift guide

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, December 5, 2019

'Twas The Night Before Christmas: special needs edition


'Twas the night before Christmas
When all through the house
Not a creature was stirring
Not even the adaptive mouse

The stockings were hung with care by the chimney
A truly awesome fine-motor-skills activity
Maybe next year I'll grasp
The figurines in the toy holiday nativity?

Some children snuggled with weighted blankets in their beds
While visions of gluten-free sugar plums danced in their heads
And I, decked out in my noise-blocking headphones
Had just settled into a very chill zone

When out on the lawn there arose such a clatter
I grabbed my orthotics to see what was the matter
Away to the window I trotted on the floor
Tore open the shutters—a range-of-motion score!

The moon shined on the snow—dare I tread?
Come to think of it, I deserve an adaptive sled!
When what to my wondering eyes did appear
But an accessible sleigh and eight tiny reindeer

With a little old driver, so full of bilateral coordination and quick
I knew in a moment it must be St. Nick
More rapid than a gait trainer his coursers they came
And he articulated vowels and consonants and called them by name:

"Now SLP! Now Wheelchair Dancer! Now ABA and Vixen!
On Bean Bag! On Foam Roller! On DAFO and Blitzen!
To the top of the porch! You can do it! To the top of the wall!
Now dash away, dash away, dash away all!"
* AND NO TOE WALKING!!!

As dry leaves that before the wild hurricane fly,
When they met an obstacle, like any kid with disabilities, they did try
So up to the house clutching their fidgets they flew
With the sleigh full of developmental toys, and St. Nicholas, too

Then faster than you can say "Reimburse me, insurance company!"  I heard on the roof
The prancing and pawing of each little hoof
As I drew in my head, and crossed midline to turn around
Down the chimney St. Nicholas came with a bound

He was dress'd all in tagless clothing from his head to his foot
And his clothes were all tarnish'd with shaving cream (sensory play!) and soot
A bundle of enabling toys was flung on his back
And he looked like a pediatric therapist just opening his pack

His eyes—how they twinkled!—his dimples, how merry
His motor planning was decent after a bazillion sessions of physical therapy
His little mouth, thanks to oral-motor exercises, was drawn up like a bow
And the beard of his chin was as white as the snow

A CBD oil capsule he held in his teeth
And the healing vibes encircled his head like a wreath
He had a broad face and a therapy-ball-round belly
That shook when he laughed just like jelly except that's jiggly and I won't eat it

He was curvy and well coordinated, a right jolly old elf
And I laughed when I saw him, in spite of myself
A wink of his eye and flexion of his head
Soon gave me to know I had nothing to dread (except those therapy bills)

He spoke not a word, but went straight to his work
Filled all the stockings using a pincer grasp, then turned with a jerk
And laying an isolated finger (woo hoo!) aside of his nose
He gave a nonverbal communication cue and up the chimney he rose

He sprang to his sleigh, and his team did their breath exercises then gave a whistle
And away they flew like the down of a thistle
But I heard him exclaim, 'ere he drove out of sight
Happy Christmas to children of all abilities, and to all a good night!

Wednesday, December 4, 2019

The free gift people can give kids and teens with disabilities year round


Like many people, I donated on Giving Tuesday to nonprofits whose missions and work are close to my heart, including one that runs programs and housing for adults with disabilities called JESPY House, The National Council on Independent Living, a camp program Max attends and our local Volunteer First Aid Squad. My Facebook feed was filled with friends raising money for their causes.

Giving Tuesday is a great chaser to the shopping frenzy of the previous days. But as I sat on my couch last night in my usual end-of-day stupor, it occurred to me that one of the greatest gifts people can give kids and teens with disabilities like my Max is 100 percent free and oh so simple. And it is: Treat our children with respect.

What does respect mean? 

Presume competence. Perhaps my child is not able to do certain things—and perhaps his challenges are more visible than others' are—but he's got plenty of abilities. Cerebral palsy, autism, Down syndrome, ADD: they're one part of who a child is, not his entire being.

Don't talk to our children in baby voices, or talk over their heads as if they aren't right there. Speak directly to them, as if they are any child. Ask questions. Talk about yourself. Be playful. Heck, make fart jokes if you want. 

Have patience. Children and teens with disabilities may take some effort to understand. Or they may be slower to get their thoughts out than other children, especially if they are using speech apps or devices. Give them time. They may not communicate like their peers do, but they can have just as much happening inside their heads.

Don't pity them. Our children don't feel bad for themselves. They don't consider themselves tragedies. They are children and teens living their childhood and adolescence in their own way, and they need confidence and cheering on—not that "oh, you poor thing" vibe that they can (and do) sense.

Oh, and respect also means teaching your children to do the same.

It would mean so much to our children, yet it takes so little.

GIVE your respect.

Tuesday, December 3, 2019

Don't park in a handicap parking spot when you're waiting for someone


The other night, our family drove into the town parking lot. As I passed one of the accessible parking spots, I saw a car idling there. This happens regularly in this parking lot, especially during rush hour, when people waiting for their partners to come home either occupy handicap spots or block them. I knew what I was going to do.

Earlier that day, I'd read a post my friend Hallie had put on her Facebook page. A mom of a girl with Down syndrome, writer and advocate, Hallie had jumped into a conversation on her local Facebook page when a woman shared that her adult daughter had been parked illegally in a handicapped spot when some guy started bothering her. "I pointed out that while I was sorry that happened, I did hope the police ticketed her for parking illegally in a handicapped spot and taking it away from someone who might need it," Hallie wrote. "The comments are unbelievable: people attacking me because 'her daughter could have moved if someone had needed the handicapped spot.'"

Hallie was outraged. As she noted, "You expect a person with a disability to park, then walk across a busy train lot to ask an able-bodied person to move their car?"

Exactly. I see it all the time, cars without handicap placards idling in accessible spots in parking lots at the supermarket, at Target, the mall, school pick-up zones, everywhere. And there's a big problem with that: Occupying or blocking a spot designated for a disabled person to pick someone up means you're taking it away from a disabled person who needs that spot. Period.

There's no justifying that it's "just" for a couple of minutes or that you'll move if someone needs the spot—a disabled person in need of the spot will likely assume someone is rightfully occupying it and move on, even though the spot was meant to be theirs. They're not going to get out of the car and check for a handicap placard, and why should they? Getting around can be challenging enough for people with physical disabilities. They shouldn't have to be inconvenienced by someone illegally occupying an accessible parking spot because parking there was convenient for them.

Even if someone idles in front of a spot, they're still blocking it. Reasoning that perhaps a person "forgot" their decal is besides the point. You're not legally allowed to park in a handicap parking spot if you do not have the designated placard or license plate, and you risk a ticket if you do. One mom on Hallie's page noted that her kid can't walk more than 200 feet "and still, if we forget the placard because we switched it in someone else's car because they were picking up my kid, I still don't park in an HC spot.... Why? Decency and societal expectations."

To be sure, people may genuinely not realize it's wrong to temporarily park in a handicap spot. But make no mistake, it is. If you wouldn't park your car in an accessible spot because you are not a disabled person or driving a disabled child, don't block the spot. And don't park on those diagonal blue lines, either—they're for loading and unloading wheelchairs off ramps in accessible vehicles.

That night in the parking lot, I walked over to the car and sure enough, there was no handicap placard. A guy was sitting there with headphones on. I knocked on the window and when he opened it I said, "You're in a handicapped parking spot. It's for people with disabilities. I have a child with disabilities, and I care." He apologetically said, "I'm just waiting for someone." I pointed out there were other spots where he could wait, and he nodded. As I walked away, he pulled out.

We're headed into holiday season and parking lots at the mall, restaurants and train stations will be more filled up than usual because of shopping and parties. Frigid weather may also make it tempting to hover in a handicapped spot so, say, a spouse or visitor getting off the train won't have far to walk. While I'm not recommending confronting people idling in their cars without placards, if you see an officer nearby you could let them know. If the person genuinely forgot their placard and they get a ticket, they can appear with it in card and get the ticket revoked. (BTW, idling is also illegal in a bunch of states.)

Be a considerate person: Don't block the accessible spot.

Monday, December 2, 2019

The joy of sharing a family first together


I grew up in Brooklyn, New York and like many New Yorkers, I've always loved watching the Macy's Thanksgiving Day Parade from the comfort of my living room, in PJs. Except months ago, Max and Sabrina got it into their heads that they wanted to be at the parade. I was dubious—could we? Would Max be freaked out by the crowds? Would he get tired? Would everyone get grumpy? It turned out to be a miracle on 72nd Street and Central Park West.

We got up at 5:40 a.m., arrived by 6:30 a.m. and claimed our spots in front (shout out to Krystin for the help). We were uptown, a somewhat more chill scene than the crowds at Herald Square. The local news had been filled with reports that the floats would be cancelled if wind was too wild, which hadn't happened since 1971. But it wasn't too gusty that morning and it was warm-ish for late November, so we lucked out. The parade started at 9 a.m. and we passed the time chatting with people around us, including one woman whose son had helped build some of the floats.

 Max made some new friends. He informed them he was moving to Los Angeles, although New York was "OK." They were amused. 

At last, we could see the giant turkey that kicked off the parade gliding toward us. We were all enchanted, and we stayed that way for the next couple of hours as we took in the balloons towering above us, the marching bands and the cool rolling floats—this year, there were 10 new ones, along with old faves. 

It's only right that a giant turkey kick things off. This was the 93rd Macy's Thanksgiving Day Parade.

Max knew that Snoopy, a parade regular since 1969, is my fave. This year, he was decked out as an astronaut. The parade was started by store employees in 1924 as a Christmas parade and changed to Thanksgiving Day in 1927. That's when balloons debuted, including a dinosaur and Felix the Cat.  

Firefighter clowns: Not scary at all. 

Poor Ronald McDonald—his knee got busted. Although the balloons were flown low, to be safe, the crosswalks were still a bit hairy for the handlers since there were no tall buildings to shield the balloons from the wind. They scrambled to keep the big guys afloat, but they did.  

When Ben got tired, we let him eat a bazillion fruit roll-ups because we are great parents.

Jimmy Fallon and The Roots: love 'em.

The Grinch looking Grinch-like. It was as if he was staring right at us. "He's BAD!" Ben announced.

The 610 Stompers from New Orleans, stole my heart. Richard Simmons, were you watching?

Sabrina and the Mt Rushmore dudes

LEGOsaurus—aka The Brick-Changer. He's new and part turkey, part dragon.

These lovely ladies are part of the Second Time Arounders, from St. Petersburg, Florida. The marching band is dedicated, as their sites says, "to those who have marched in a college, high school, DCI or military marching band...and dreamed of doing it one more time."

Idina Frozen Menzel herself

Olaf, my Disney crush

And so, my kids crossed something off their bucket lists. We all did. Several days later, I can still picture those glorious balloons floating by, the exuberant marching bands, the clowns happily tossing confetti (one took off Ben's hat, dumped some in and put it back on him) and the look of pure awe on my children's faces. 


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