Friday, September 20, 2019

The Disability Blogger Weekend Link-up: Got something to share?


Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: Students with disabilities and the homework thing

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. Thanks for stopping by!


Wednesday, September 18, 2019

Students with disabilities and the homework thing


We got a form home last week from Max's new math and English teacher about homework to fill out.

Did we want our child to have homework? ONE HUNDRED PERCENT YES. (I just circled "yes.")

Did we want the homework to be daily? Yes.

Did we want the homework sent home every afternoon or on Mondays and returned on Friday?
I chose to get it all on Monday, which is wonderful thing for a working parent as some evenings I am able to do homework with Max earlier, which is better for him.

But as is my way, I started thinking about the whole homework thing. I know why the teacher asked whether the students should get any, as it was explained to me by a social worker when Max first started at the school and I expressed surprise that it was an option. She noted that some parents felt that their students were pretty wiped out by the end of the day, and homework wasn't something they could handle.

There's a longtime debate about the efficacy of homework and students of all abilities. One meta-analysis of studies, as reported by Time, found a correlation between homework and achievement, especially with older students. It can also help instill good study habits and boost problem-solving skills. Yet there are studies that have pointed to homework hindering family time and downtime, and causing physical and emotional fatigue.

Luckily, at Max's school there is a choice.

The truth is, Max can be pretty pooped by early evening. But if I am holding him to the same standard as I do his sister, who is also in high school, he should be getting homework. And if I hold Max up to the his own standards, well, he needs homework. He learns best through repetition. Homework enables me to see where he's struggling and to reach out to the teacher for suggestions.

Math does not come easily to him; like Max, I struggled with it in school, so I relate. He is acing spelling and reading, and can do work pages independently (we use the SnapType app), but not math ones. Coming home from work and poring over addition problems at 7:30 or 8:00 isn't always the easiest thing for either of us, especially if I can't find a way to occupy Ben (sometimes, I ask him to draw in a coloring book and say that's his "homework" and sometimes, he just wants to do laps around the house). But I signed up for this parenting gig and so, there we sit at the kitchen table.

Max is usually cool with doing homework, especially his Weekend News reports so he can talk about going out for yet another steak dinner (his current food obsession) and drop in a mention of his plan to move to L.A. Homework gives him confidence. When he readily knows an answer on a worksheet, a smile will light up his face.

"That's easy!" he'll say.

Tuesday, September 17, 2019

Hey, doc, maybe you know a good place to get Max foot rubs?


A good place to get Max foot rubs wasn't on my list of stuff to discuss at Max's annual neurologist visit yesterday. But that's where the conversation veered, and it was all good.

We've been seeing this neuro since Max was two weeks old. Although he is one of the more upbeat, wise and kind doctors of the world, the appointments used to fill me with anxiety. I dreaded the part where he'd measure Max's head; Max had microcephaly (a smaller than normal head circumference) as a result of the brain damage, and while I'd eventually take to heart the doctor's words to look at Max, not his statistics, I wasn't there yet. I was scared of that measurement, and the fact that it wasn't anywhere near where it "should" have been. I wasn't ready to accept Max for who he was. I only wanted to know what lay ahead for him. And of course, nobody could tell me that.

I went to the appointment with a list of questions, as I always have. I started off by mentioning that we'd seen a surge of maturity in Max this year. The camp program he was at had noticed it, too, especially in terms of his ability to follow directions. I talked about Max taking walks in our neighborhood (he has his Apple Watch on and we follow him via the FindMyFriends app), and how he's increasingly game to lend a hand, whether it's putting the recyclables on the curb or picking up the newspaper on our walkway on the weekend.

Max nodded enthusiastically, then returned to texting Dave on his Apple watch, as he proceeded to do for much of the appointment.

I launched right into a biggie: I asked for Dr. A.'s  thoughts about job possibilities for Max, who's going to be 17 in December. (OMGEEEEEE.) He noted this was a good time to start thinking about it, and noted that the his work potential would center around Max's strengths. We talked about how social and charming he is, and his fierce determination. (Max nodded.) He advised me to ask Max's school and our district liaison about Naviance, a software provider that helps high-schoolers identify their strengths for college and career planning.

I asked about CBD oil, and whether he felt it might benefit Max. He didn't think so—Max hasn't had the type of seizures that it could help prevent (he's had a few grand mals) or anxiety. But I'm going to be keeping my eye on that stuff.

We discussed Max's communication skills, and Max spelled out a couple of sentences using his watch. The doctor was impressed. Max also showed him a photo of a building at University of Southern California, as Max has decided he wants to go there. That lead to a discussion about which patients of his had been through college programs and which local ones existed for people with intellectual disability. There don't seem to be a whole lot of choices. Max will stay in his current school until he's 21, and then, we will see. If he still wants to keep studying at that point, perhaps other options will crop up and if not, perhaps we can make something happen.

I brought up the surgery to control Max's excessive saliva, which was a fail. I mentioned that the drool was a hindrance to Max socially and that the same could be true with a job. This is something that sometimes make me despair, because Max is the most charismatic boy but the drool can be off-putting to people. Dr. A. said he'd ask a doctor he knew about other treatments.

We got to talking about Max's passions, which made me perk up again. Max finally lifted his head from his watch. Last year at this time, Max had been itching to move to Orlando. And now, following a joy trip last February with Dave to California, he wanted to move to Los Angeles (hence, USC). "It's my new home!" said Max.  ]

As Dr. A. checked out Max's limbs, I mentioned that Max is into steak and enjoys going out for dinner. I noted that Max has gotten past his noise sensitivity and that he and Dave had been to see a football game the other week. I mentioned that he and Dave liked to get foot rubs together, which made both Max and Dr. A. smile delightedly.

"I know, Max lives a good life!" I said.

"There's an excellent place to get a foot rub near us," he said, and while he couldn't remember the name he said he'd send it. Max looked excited.

Last, he took a look at his gait. "Wow!" he said. And indeed, Max's feet were both straight and not turning inward, as they have in the past; the procedure done two years ago to straighten his right foot had worked.

We left with a prescription to test Max's bloodwork and make sure his anti-seizure meds are at the levels where they need to be, a small list of to-dos and Dr. A.'s promise to check in with the doctor he knew and, perhaps even more importantly, let me know about the foot rub place.

It was a good visit.

Monday, September 16, 2019

I've got you, bro


When Max got home from school on Friday, Ben decided to help him take off his foot braces and Max was happy to let him. It was the first time Ben had offered. Melt. I flashed back to when Max had serial casting done eight years ago and Sabrina took off the final cast, and all the warm-fuzzies that had given me.

Years ago, when we were deciding on having a third child and I wrote about it here, I'd mentioned that would mean another sibling who could be there for Max—not the only reason to have a third kid, of course, but one of them. It got some negative comments, mainly how unfair it would be to this child. Well, I can now affirmatively call b.s. Max and Ben have a relationship like many siblings: they tease, fight and love each other fiercely. And when Max sometimes needs a hand, Ben gives it to him; it's become second nature.

Max, in turn, is growing up with the confidence that he can take care of someone, too. He's there to caution Ben when he's about to jump off the sofa. He unlocks our front for him. He has helped teach Ben to ride a bike and has also given him rides in a bike trailer. Sometimes, he lovingly looks at him says "Benjamin!" for no reason at all or just leans over to kiss his head. Melt.

Last night, while we were out having sushi, Max borrowed Dave's phone and googled a tote bag imprinted with "Los Angeles, California." Max is obsessed with any LA, CA merch these days, because he is hell bent on moving there. Max kept pointing to the tote, saying our city and then something neither Dave nor I could understand.

Max dug in and refused to spell out the word on his Apple watch (which he uses to communicate when his iPad isn't around). Instead, he kept repeating it and repeating it and got increasingly frustrated with us. Ben had been watching something on my phone and he finally glanced up and said "Max is saying 'park.'" AHHHHH. Max was telling us that he'd use the tote bag for trips to the park, and only Ben understood him.

Melt.

Before we headed home, we stopped by the park. Ben zoomed around the jungle gym then settled onto a swing. He hasn't yet gotten the hang of pumping his leg. But guess who was right there to push him?

You bet.

Friday, September 13, 2019

The Disability Blogger Weekend Link-up: you read that right


Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: An autistic man uses his iPad to speak at the 9/11 memorial service

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. Thanks for stopping by!


Thursday, September 12, 2019

An autistic man uses his iPad to speak at the 9/11 memorial service


When William Aronow was a little guy, his father, Richard, had a dream of creating a school for autistic children like his son. Richard was the deputy chief of the Port Authority's law department and on 9/11, he was working on the 84th floor of the World Trade Center's North Tower when the plane attack started. He did not survive. William was 4 at the time.

Yesterday morning, at work, I clicked onto the 9/11 memorial service and started weeping. A few minutes later my friend Wendy texted me a video she'd taken earlier on in the service; she thought I'd want to see it. I watched as a young man used a speech app on his iPad to articulate the names of people who died on 9/11 and to pay tribute to his father. That young man was William, now 22. Suddenly, I wasn't crying. I was floored and awed by the poise of this young man and the power of augmentative communication, which has also given my Max a voice.


I'd later find out that the woman holding the iPad was his mom, Laura Ann Weinberg. She became a speech therapist. She shared her pride for her son on her Facebook page: "He has been using touchscreen voice output devices since 2011 and gets better at it every year. He practiced and said what he wanted to say!" Laura also spoke of the challenges she'd encountered early on getting William an AAC device. "He didn't qualify for a voice output device for 6 years during which I knew he was at least partially literate. He'd find calamari on a menu and show it to the waiter!" And now, she noted, "technology has finally caught up with our son, and he has a real voice."

I shared the video on Facebook, and it was clear from the comments that, like me, many parents of children with disabilities as well as teachers and speech therapists were so, so proud of William, too. Some noted the extreme control he'd shown on stage, in front of the large crowd. "To some, you might just see a young man standing there, but to an autism parent we see more than you can imagine. I see a young man full of courage working through his anxiety and looking up at his uncle because he was proud of himself," said New Jersey mom Nikki Goldywn. "Every year I see something new from 9/11 that breaks my heart a little more," said Dayna Liebman, a woman in Florida studying to become a speech pathologist. "For the first time I've found something to smile about while honoring all of the lives lost too soon."

On the most somber day of the year, the names of the deceased streaming out of William's iPad were as potently articulated as any. His words to his father—"I love you very much" and "I miss you"—were as emotional and moving as any. William's presence on stage sent a message: People with disabilities should be included in every aspect of life—grieving, too. His use of his speech app also spoke volumes. William was there to commemorate the dad he loved and lost, but in doing so, he showed the world that voices come in all forms.

RIP, Richard Avery Aronow. I hope your son's voice made its way to you.


Image: Laura Ann Weinberg

Wednesday, September 11, 2019

Say her name


This girl would have been turning 47 in October. She is Melisa ReneƩ Vincent, she worked on the 102nd floor of 1 World Trade Center and she died on 9/11. Melissa lived in Hoboken, NJ, as I did in my twenties. I'd seen her beautiful face on "Missing" flyers around town. Six years ago, I did some digging, found her name, learned a bit about her and vowed to always remember her.

Today marks 18 years since the two planes struck The Twin Towers, another flew into the Pentagon and United Airlines Flight 93 spiraled from the sky into a field in rural Pennsylvania. This morning, en route to work, I stopped by the tree at my train station planted for the two people from our town who died on 9/11, commuting parents just like me. Soon, I will tune in to the reading of names held at the 9/11 Memorial & Museum and beam hugs toward their loved ones. I will observe the moments of silence. I will think back to being on the ferry from Hoboken to New York that day and seeing smoke pouring out of the North Tower, the one where Melissa worked.

If you did not lose someone you knew or loved on that day, if you haven't visited the 9/11 Memorial & Museum (I still haven't) and its Wall of Faces, perhaps the victims you saw on flyers, in the newspapers or on TV back then have morphed into a sad blur. Like many, I will pay tribute to these 2983 souls as a whole. And I will think of Melissa and keep my memory of her alive.

I'd read that she liked Broadway shows. This year, in her honor, I donated to Rosie's Theater Kids, a nonprofit that enables low-income students to enjoy performances and attend musical theater classes.

Melissa, I will not forget.

Tuesday, September 10, 2019

A new program trains people with disabilities to be aides for people with disabilities


Yesterday I read about an academy in Washington, D.C. that is training young people with autism and intellectual disability to become aides. Called Direct Service Professional Academy, it aims to give career opps to people with disabilities and help with the shortage of home health aides, reports Disability Scoop. One class of high school seniors has already graduated, and 12 students are currently enrolled.

"I'm going to love this job because I've been through it," and I know what it feels like to not be supported," says 18-year-old student Carmela Mack, who is hearing impaired, "I can connect with them because that was me."

During the 120-hour, six-week course, she and her fellow students learn about the history of disability rights, along with how to plan activities and coordinate public transportation. There are also sessions on health, wellness and other topics. They graduate with the skills and certifications they need to become a Direct Service Professional (DSP).

The Academy is run by RCM, a company that provides support to people with disabilities. It is funded by Washington's Department on Disability Services, and is free to participants. Graduates who go on to become aides are usually paid through Medicaid.

The program makes all the sense. Some people with disabilities need a helping hand. Many people with disabilities need a job—and they'd bring with them a special level of understanding and empathy. Why not match them up?

Total win-win.

Monday, September 9, 2019

No matter the disability, all children have the ability to....


"No matter the disability, all people have the ability to dream!" That's the winner of a caption-the-photo contest Special Olympics recently held, submitted by one Abigail from Pennsylvania. Maybe that's not news if you're the parent of a child with disabilities, but it may not be obvious to others.

This weekend, I had a conversation with a friend who was visiting about how having a child with cerebral palsy had opened up a world to us that I'd likely not have otherwise known a lot about. As Max's mom, I've taught him so much—but he's taught me so much, too.

No matter the disability, all children have the ability to communicate in their own way, whether with words, movements or their eyes.

No matter the disability, all children have the ability to enjoy.

No matter the disability, all children have the ability to have firm preferences and opinions. And to be quite stubborn, too.

No matter the disability, all children have the ability to be cute, adorable, handsome or beautiful—the same as any child.

No matter the disability, all children have the ability to be devilish or naughty or non-angelic. (See: "the same as any child.")

No matter the disability, all children have the ability to experience a range of emotions.

No matter the disability, all children have the ability to dislike when people talk about them as if they aren't right there.

No matter the disability, all children have the ability to want to belong.

No matter the disability, all children have the ability to feel loved.

No matter the disability, all children have the ability to love.

No matter the disability, all children have the ability to.....

You tell me.

Image: Special Olympics

Friday, September 6, 2019

The Disability Blogger Weekend Link-up: share here!


Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: This is what goes through your head when your son wants to wear nail polish

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. Thanks for stopping by!


Wednesday, September 4, 2019

A place for kids to practice life skills, a Starbucks barista learns sign language for a customer and other great news


A weekly roundup of news, events and Good Stuff.

Disney Cruise Line has debuted 46 accessible shore excursions in 39 ports around the world. It's not just magical, it's about time! Wheelchair Travel has a list of the excursions.


LifeTown will officially open in Livingston, New Jersey next Monday, a recreational, therapeutic and educational center. Its centerpiece: a downtown replica with a bookstore, a clothing store, a nail salon, a bank and more storefronts where youth with disabilities can practice life skills and get job training. Staffed by volunteers, Life Village will be open to public programming. There's a similar village in West Bloomfield, Michigan. And yep, that's Max pedaling around—there's lots of space for fun, too. (Image by Ed Murray for NJ Advance Media).

Dental schools in the U.S. will be required, starting in mid-2020, to train students to work with patients with intellectual and developmental disabilities, reports DisabilityScoop.

In case you missed it: LEGO released audio and Braille instructions, the brainchild of one blind man and the babysitter who made sure he had access to the same fun other kids did. Here's the story.

Last, this. ❤️

This is what goes through your head when your son wants to wear nail polish


Hmmm... They put nail polish on him at the program he was at. He's pretty excited about it. Of course it's red, perfect for an aspiring firefighter

How do I feel about this?

Not sure. 

It's so old-school to think that boys shouldn't wear nail polish.

Still, it doesn't seem like wearing red polish will do him any favors. He already gets stares.

But HE likes it.

OK, then. Let it be. 

A couple of weeks go by. The red nail polish sticks around. Max's toenails have been gnarly ever since he got home from camp so Dave takes him out for a pedicure/foot rub (Max really enjoys a good foot rub). Dave calls me from the salon.

Dave: "Honey, Max wants red nail polish on his toes."

Ohhhh. 

Gut check. Gut check. Is this really OK? 

Me: "What if he gets red on just his big toes? See what he thinks."

Dave: "Sounds good."

When Max comes home, he proudly shows off his two big red toes. In the days that follow, I continue to ponder the pedi situation.

So what if people stare at his feet? 

Would ten red toes be any worse than two? 

What kind of random solution was that? 

Max is almost seventeen.

OHMIGOD HE IS ALMOST SEVENTEEN. 

He has firm opinions and a desire to express himself, same as any teen. And I need to respect that and
repress my I-know-what's-best-for-him instincts and quit worrying so much about him fitting in. Max isn't self-conscious about his disabilities or his toes. 

I've been paving roads for Max his entire life, but it's time to let him lead the way. 

Really, ten red toes are not going to make or break how people perceive him. Some will see and appreciate all of Max—his personality, his disabilities, his giant smile, his smarts, his toes, the whole shebang. Some will see a person who doesn't seem "normal," with or without the red nails. That's their problem, not Max's. And they don't deserve the pleasure of hanging with him.

Hello, it's not like he asked to get a tattoo of a firefighter. Nail polish comes off.  Besides, chilly weather is coming. Nobody will even see his toes, except him. And they'll make him  happy. 

I owe this boy a pedicure do-over. 


Tuesday, September 3, 2019

Guess who Keanu looks like?


My friend Joanna shared this photo with me yesterday. And, yep, Keanu Reeves looks like Max, lucky guy.


I think this bodes well for Max's master plan to move to Los Angeles.

That is all.


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