Friday, September 27, 2019

The Disability Blogger Weekend Link-up: Share and share alike!


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: Love That Max: If I'd never had a child with disabilities

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 26, 2019

Tips for picky eaters with sensory needs from a kid who wrote the book


I recently got to do a Q&A with 7-year-old Logan Martinez, coauthor of the new book Kitties Don't Eat Quesadillas: An A To Z Picture Book For Picky Eaters. Logan drew all of the illustrations and collaborated on the words with his mom, Patty, a longtime work friend of mine. It's a seriously cute, engaging book that can spark good discussions about food—my little guy wants me to read it to him every night. Patty describes Logan, who's on the autism spectrum, as a really outgoing, intelligent, curious kid who knows everything about Sonic the Hedgehog, including the year his balloon crashed in the Macy's Thanksgiving Day Parade. "He loves music, reading, math, drawing and science experiments, and has a fascination with the alphabet, so it's no surprise he wrote a book that way," says Patty. "His favorite thing to do is make people laugh. But he's also equally empathetic. Kids are drawn to him; my spiritual friends have described him as a Rainbow Child." 

Here's Logan, sharing more about the book plus tips for parents on helping their children.



What are your favorite foods, Logan? 
Quesadillas, which is how we came up with the book. My cat, Izzy, was a picky eater like me, and she got sick and stopped eating even her favorite cat food. So I said to Mom, ''Maybe we should try giving her a quesadilla." Mom said, "Kitties don't eat quesadillas." When I heard that, I thought it would make a good book title. I like the Dragons Love Tacos books and it reminded me of that. I also really like apples and pretzel spoons, which is what I call pretzel sticks when I dip them into peanut butter, and pancakes with Nutella. Dad introduced that to me.

What foods are you not so into? 
Everything else! That's a long, long list, like a billion-trillion foods long. I don't think you have time for that.

Is there a food you didn't like but now you do? 
I didn't used to eat cereals that a lot of my friends ate, because I didn't like how they felt. I didn't like how the cinnamon from Cinnamon Toast Crunch would fall off on my hands when I ate it. And I didn't like the powdery feeling left on my hands when I tried Reese's Puffs, even though peanut butter cups are my favorite. Now, I've learned to get used to it, and just wipe my hands on a napkin—or probably more often, my pants!

Here's the answer my mom wants me to say, so it doesn't sound like all I eat is junk food: I don't eat green foods (except for Veggie Stix, which come in yellow, orange, and green). But for the past three years or so I've been drinking green juices that have healthy things like kale, spinach, apples, and celery in them. The reason I started drinking it, is because I liked orange-mango juice and my mom started calling it, orange green juice. I got used to hearing that, and decided if the green juice was the same, but just a different color, I could try it. I did and I liked it.


Can you tell us about how you created the book?
Once we came up with the idea, I thought we could do it as an ABC book, because I love the alphabet. So Mom and I talked about the foods we could use in the book. She came up with a lot of them, especially the ones I had never even heard of. I had no idea what vindaloo was. Now I've seen it when my parents have ordered in Indian food. But I still don't really know what it is. After we came up with food for all of the letters, we talked about why someone may not want to eat that food, and mom showed me lots of pictures from Google. I used a lot of the same words for why I wouldn't eat them, and Mom knows lots of words, so she came up with different words. Her words sounded good together, and sometimes they even rhymed or almost sounded like a song. I think she did a good job. Then after all that was done, I started drawing the letters and the cats, and came up with different expressions for their faces. My favorite is the cat that is puking. When I say that, mom tells me "You're such a boy"—whatever that's supposed to mean. Yes, I am a boy.

What do you hope this book will do for kids who are picky eaters?
Help them learn to be non-picky eaters. I am still learning, too. We can learn together.

When parents have kids who are picky eaters, what are some things they can do to help their kids?
Don't try to make them eat things, or yell at them. Mom wants me to tell you that she and Dad don't yell at me, but some parents do, I've heard them at restaurants! It can hurt kids' feelings. We aren't picky because we want to be difficult. We are picky because something in our brains says "ewww". It can be the smell, the look, the feel of a food. And sometimes seeing the food over and over does help you get used to it. I learned the Touch, Kiss, Taste way. In OT, I was taught even if I think a food looks gross, to work up to being able to touch it. This could take many, many times of seeing it before you will pick it up. Then work your way up to being able to "kiss it," which really means put it to your lips without biting into it. Much, much, much later on, when you really feel comfortable with it, you can bite into it. If you are not ready, you can lick it first as a cheat step, and eventually bite into it. This is how I discovered pretzel spoons. For the most part, I don't like when foods touch. So I would eat peanut butter with a spoon, and then eat pretzels—not together. But I worked on it in OT, and eventually decided I like the two together.


How have your mom and dad helped you be less picky about food? 
They try to find things that are similar to things I already like, and show me that the new food isn't that different, Like if you like apples, you might like pears. Sometimes it works. Sometimes it doesn't! They also do things for me, like peel the skin off of my apples, cut the crusts off bread and wipe my apples with a napkin, so they aren't so wet. It's funny—I don't like wet foods, but I love to drink! So I may not eat my vegetables, or even many fruits, but my parents give me protein shakes, juices, and smoothies, so I still get in all of the healthy stuff. My protein shake has 8 grams of protein and 21 vitamins and minerals. I am not being paid to say that!

What is the next new food you might be willing to try?
I have come around to banana bread, so maybe eventually, like months from now, I will try bananas again. My mom says I used to eat them as a baby, but right now they seem too squishy. I don't want to be picky, but I can't help it. And I am working towards being less picky. But it's really, really hard. And I think it's really hard for other kids, too. The thing my mom and my teachers have told me—and that's why we wanted to say it in the book—is that just because you don't like something today, doesn't mean you will never like it.

For more information on the book (a portion of the profits are going to animal shelters and adoption centers), to see Logan reading a copy and to read reviews by cats, visit the website




Wednesday, September 25, 2019

An award for NICU nurses and more news


It's NICU Awareness Month, and if you want to show some love to a favorite NICU nurse, nominate her to win the Owl Give Award and she or he could score an all-expenses paid vacation. (Above is last year's winner, Ashley Grumbine.) The award is sponsored by the Jackson Chance Foundation, which was created by Carrie and Terry Meghie in honor of their son Jackson, who passed away at 10 months old after spending his entire young life in the NICU. The nonprofit partners with hospitals to provide complementary parking passes to families with babies in the NICU. Nominations are open until September 30.


This week The Cartoon Network launched a mentoring program for autistic animators and filmmakers to help them break into the industry, reports The Mighty. They've partnered with Exceptional Minds, a professional training academy and studio for people with autism. The 20 students in the pilot run of the program will get guidance from industry pros.


File under: WHAT?! When an elementary school student with autism in Washington needed a quiet place to work, his teacher put his desk in a bathroom that she supposedly claimed it was acceptable, as it was no longer in use. This teacher, the mom noted in the Facebook post where she shared the above photo, also provided a camping pillow and a mat for the bathroom floor. "My son was humiliated embarrassed and disgusted at this inhumane suggestion that he work in a bathroom," she said. Mind. Boggling.

In the New York City area? Bluelaces Theater Company, a group in Long Island City that creates sensory-immersive productions for individuals on the spectrum and other disabilities, has one coming up that will run October 18th to November 3rd. Tickets are on sale now.

If you haven't gotten enough of Kodi Lee, the talented singer who won American Idol and who happens to be blind and autistic, here's a compilation of all his performances on the series. His rendition of Bridge Over Troubled Water is the best thing that ever happened to that show.


Top image: Team Ryan Facebook page

Tuesday, September 24, 2019

If I'd never had a child with disabilities


Sometimes, when I have time to sit quietly and really think (approximately once every three years), I ponder how Max has changed my life. It happened last week, when I found out that the folks at Understood are planning a podcast about the joys parents have found raising a child with learning differences and I posted about it on Facebook.

It's natural for the hard stuff to spring to mind about raising a child with disabilities—all the doctor appointments, the insurance paperwork and pestering, the heartbreak (especially early on in your child's life), the patience, the scares, need I go on? But then, there are so many things I would have never known if it weren't for Max.

For one, I would likely have not been a part of the disability community. I wouldn't have met so many cool, interesting and smart kids and adults because I probably wouldn't have otherwise connected with them. It's sad to ponder, but true. Until I had Max, I had no ties to the disability community.

If I'd never had a child with disabilities, I probably wouldn't be as resourceful as I am, or as dogged. I've always been a determined person but Max pushed me into overdrive. It started back when he was a newborn in the NICU, and I kept asking me for the physical therapist tp stop by and check him out. The social worker told me I'd be his best advocate, and I have. There is nothing I won't ask, no call I won't make and basically nothing I won't do to enable Max and get him the help and resources he deserves.

If I'd never had a child with disabilities, I wouldn't consider the abilities every single one of us have, in all forms.

If I'd never had a child with disabilities, I wouldn't know about the joy of celebrating progress both big and small. Every new consonant articulated, every math worksheet done, every soccer ball kicked, every step taken toward taking off pants or putting on a shirt, every step into a sensory-scary place—it's all worthy of woo hoos.

If I'd never had a child with disabilities, I would still probably feel mostly pity for people with disabilities, like I used to do when I saw parents at the mall who had kids with special needs. Now I know: My Max is living his best life, just like any one of us. He deserves parity, not pity.

If I'd never had a child with disabilities, I wouldn't understand that parenting a child with special needs doesn't make you a saint—it makes you a parent. Max gets love and gives love, the same as any of my children.

If I'd never had a child with disabilities, I wouldn't know the many forms of communication that exist. I used to think that talking existed only in spoken words. Now I know that it can be a voice streaming from an app, gestures, nods, a look in a child's eyes, pupils rolling up or down to express "yes" and "no." There are lots of ways to express yourself.

If I'd never had a child with disabilities, I wouldn't know that "typical" isn't the end all be all.

If I'd never had a child with disabilities, I wouldn't know how enjoyable "quirky" can be.

If I'd never had a child with disabilities, I wouldn't understand that they can be naughty and nice, stubborn and sweet, manipulative and so much fun. They have 3D personalities, because they are...human.

If I'd never had a child with disabilities, I wouldn't have understood what it's like to be lifted, inspired and loved by a virtual community of parents who truly get it and who give me reality checks every single day.

If I'd never had a child with disabilities, I would be a far less open-minded, accepting, empathetic and understanding person. Really, all my children have made me a better person. A somewhat frenzied, crazed person who wakes up at 3:00 a.m. and remembers she forgot to fill out the form for the class trip but still: a better person.

Parents shared responses to my post on Facebook, including Teresa Brown, an exceptionally wise woman who's parent to an adult child with disabilities, and one with disabilities who passed away. She posted something she'd written a few months before Sarah died, just after her fifth birthday, beautiful words about where she's been but otherwise would have never gone if she hadn't had a child with disabilities.

The people I met who would have been strangers.
The things I have seen that would have been hidden.
The joy about inchstones of progress that are missed by those who only see milestones.
The words I have spoken that would have been left unsaid. 
All that has been, and all that is to come, is because of you, the child I never expected, the experiences I never sought, a life I never dreamed would be so different than I planned, harder, but more perfect than I imagined!
I am truly blessed, because of you. 

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

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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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