Tuesday, November 19, 2019

Kicking a tot with Down syndrome out of preschool over potty training is discrimination

Kicking a three-year-old with Down syndrome out of preschool because she was not potty trained is discrimination. Now a preschool in Moorestown, NJ, has to pay an $18,000 settlement to the child's parents, reports NBC News, and a $30,000 civil fine.

A refusal to accommodate a child with disabilities may not be news to those of us who have children with disabilities; so many of us have had to contend with camps, after-school programs and activities refusing to include our children, especially when they're delayed with independent toileting. But this is an important reminder that parents have a legal leg to stand on.

The parents in the case had provided the preschool, Chesterbrook Academy, with medical documents that stated toilet training is more challenging for children with Down syndrome. A couple of days later, the principal informed the parents that their daughter would be disenrolled if she were not potty-trained within seven days (an unreasonable demand for most any child). The parents requested that she be transferred back to a classroom in which staff provided diapering; they were refused. Same for their requests to extend the deadline. After their little girl was booted out, the parents filed a complaint with the U.S. Department of Justice.

The attorney's office found that the preschool violated the Americans With Disabilities Act when it "refused to modify its standard toileting policy" for the child and then expelled her "on the basis of her disability." The school had, in fact, according to the official complaint, had "prior involvement with investigations and litigation on this issue."

The company that owns the day care, Nobel Learning Communities Inc, has 157 daycares across the country As part of the settlement, the company has change its policy on potty training to one that provides "reasonable modifications for children with disabilities." Amen!

This is a lesson to all parents of children with disabilities: your child has the legal right to accommodations in places that serve the public, including day care centers, parks, private schools, libraries, restaurants, hotels, theater, retail store, doctors' office and the list goes on. And if your child is shut out, then you can file a complaint with the U.S. Department of Justice, here. If you have any questions about filing an ADA complaint, you can call the ADA Information Line at 800-514-0301 or 800-514-0383 (TTY).

People's sensibilities, ethics or hearts may not always be on our side, but the law sure is.

Friday, November 15, 2019

The Disability Blogger Weekend Link-up is your place to post

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: A speech therapist teaches her dog to talk

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, November 14, 2019

This is when my boy's future terrifies me

A couple of years ago around this time, I parked outside a local group home I'd heard about and tried to peer into Max's future. I got an outpouring of responses to that post, including hearing from a neighbor that her niece was at a great local home. Recently, another group home opened in our area that seemed to have potential. There are times when I have hope about Max leading an independent life as an adult. And then I come across headlines like these and I am totally gripped by fear...and anger.

Five employees at an adult daycare provider for people with disabilities, along with the facility, have been accused of abandonment, endangerment and neglect. Disabled adults were supposedly physically abused by staffers.

Horrific. Disgusting. Who ARE these people?!

Stories like this hit my news feed all too often. The stats are alarming: People with developmental disabilities are four to ten times more likely to be abused than people without disabilities, and are also more likely to be abused by a caregiver or someone they know. Last year, a report found that for people with developmental disabilities living in group homes, injuries, serious medical conditions and death itself were often not looked into or went unreported.

At this point in my development as a parent, I am pretty confident about getting Max what he needs. I have found a great team of therapists. I have persuaded insurance companies to pay for therapies, surgery and equipment. I have gotten him into various programs and camps. But crimes like this make me doubtful. How can I be sure that, left to live independently, Max will truly be in good, safe hands? While he would have the ability to tell me if something was wrong, I don't want to ever risk anything awful. But putting your child in a group home carries the all too real risk of abuse.

I do believe in the vast goodness of people. But I also know that Max, young adults and children like him are vulnerable.

I don't have answers today, just worries.

Wednesday, November 13, 2019

How to get diapers for kids with disabilities at no cost

Once in a while, when I think that a company offers a helpful service, I partner with them to share information. This is a sponsored feature.

One of the great wins of Max's development was potty-training. We'd tried and started a bunch of times, and it didn't kick in. Finally, just before he turned 10, we devoted ourselves to it during the week when we were holed up in a hotel because of Hurricane Sandy. Within a couple of years, Max was nighttime trained as well.

Because Max was small for his age, the biggest size pull-ups fit him. But I know other parents of children with cerebral palsy, autism and Down syndrome who have faced challenges with finding incontinence supplies, not to mention dealing with yet another expense on top of the other ones they were already juggling. 

As you may well know, sometimes our kids are not physically or psychologically ready to toilet train. Like many things in their lives, they are on their own timelines, and nobody else's. Good-quality pull-ups and diapers are key, so your child or teen can have peace of mind at school, on the playground, at an event or wherever they are. (You, too.) 

Getting free incontinence supplies for kids with disabilities

Whether your child is still in diapers or in the on-and-off-again stage of toilet training, or you have a child who cannot physically toilet train, there's a good resource I recently learned about for getting incontinence supplies at no cost through Medicaid. Here's the deal. 

To qualify for free incontinence supplies, your child should be enrolled in Medicaid for your state—some states will provide diapers, pull-ups, changing gloves, underpads (chux) and wipes to kids at least three or four years of age or up, as long as your child has a diagnosis that contributes to incontinence. You can read more about applying for Medicaid at usa.gov/medicaid.  

It's time to figure out how to get your products, which has to be through a Medicaid-approved durable medical equipment (DME) provider. Choosing the right one can make things go smoothly, like Aeroflow Urology. Simply fill out a quick online form to see if you qualify. Your dedicated representative will verify coverage, work with your child's doctor to obtain the necessary prescription and manage all the paperwork. You can request samples before committing to a particular product to make sure you're satisfied with the quality and fit. 

And finally....
Once your child is matched with appropriate supplies, they'll be shipped to your home monthly or as insurance allows. You can make changes at any time by contacting your rep in whatever way is convenient for you—text, email or phone.

Easy peasy. And isn't it nice to have at least one easy peasy thing on your list?

Image: classroomcamera

Tuesday, November 12, 2019

When your child acts differently around each parent

Max's abilities at home sometimes depend on which parent he is with. I'm Tough Mommy—he knows that around me, he has to eat on his own, pull up his own pants and spell out his weekend news reports for school. With Marshmallow Daddy, it's a whole other story. This became seriously obvious over the weekend, when Dave was away on business. My mom, my sister and her family stayed over, and we went out to dinner to celebrate my beautiful mom's big birthday.

I'd given Max fair warning: "Hey, Max, I am not going to feed you." Max is perfectly capable of feeding himself, assuming we cut up food as necessary into smaller pieces. But when we go out to eat, he prefers that Dave spoon-feed him. No, make that he expects that Dave will feed him. And yes, I know: It shouldn't be happening. But it does. The habit is hard to break, on both sides.

I get it. For years, since Max was a little guy, he's been the primary feeder. Early on in Max's life, it was a very emotional thing for me; I struggled with the fact that the seemingly most basic functions—chewing, swallowing, sipping—were hard for our little guy. I struggled with a lot back then. But Dave's woe-is-him feelings were not as intense as mine were. And so he spoon fed Max...and never stopped.

At dinner, I ordered Max's faves: onion soup, steak and mashed potatoes. When the soup arrived, I handed him the spoon, tucked a couple of cloth napkins into his shirt, put one on his lap and let him go to it. Max needed a hand with severing long strings of cheese but otherwise did fine. When his steak arrived, I cut it into bits. Max gestured toward the soup bowl, and I dropped pieces in there. He downed it all, in between spoonfuls of mashed potatoes. Like I knew he could and would. Then he drank two glasses of milk. By himself.


I think we're going to need to go cold turkey on this one. Or cold steak.

Monday, November 11, 2019

A speech therapist teaches her dog to talk

If you have a child with disabilities who uses a communication device or you're a speech therapist, then you know just how game-changing they can be. Christina Hunger, a speech language pathologist in San Diego, California, is making news with another communication breakthrough: she has taught her dog, Stella, to communicate in sentences using a soundboard. As she mused when she first started, "If dogs can understand words we say to them, shouldn't they be able to say words to us?" 

Christina and her fiancĂ©, Jake, began by programming a recordable buzzer to say "outside," and they'd tap it before opening the door. Soon, when Christina said, "Outside? Stella, want to go outside?" Stella would looking at the button. Then Stella started paw-ing it herself. Within months, she was putting together words. 

The couple programmed more buttons—eat, no, come, help, love you. Christina taught Stella words, just like she did in speech therapy sessions with the young children she worked with. She didn't reward Stella with treats; she acknowledge what she'd said and responded.

Here's Stella, asking for a walk to the park. Like, now.

Stella has learned to ask for water. If she wants to play tug of war, she'll press "play." She'll say "bye" if visitors put on jackets by the door. And if she was bummed that Christina was headed out to work? Well, this:

It's gotten to the point where Stella is able to let Christina know that Jake has shown up at the house, after hearing his car beep.

Christina's Insta account and blog are full of encouraging words about augmentative and alternative communication. I'm glad she's making AAC buzzy. Strangers are often amazed when Max uses his iPad speech app (TouchChat with WordPower)—a device that can speak words is still a novel thing. It's also still surprising to people to know just how much someone with a disability may have going in inside their brains. The more others can better understand the ways in which AAC opens up worlds, the more inclusive our world will be.

Friday, November 8, 2019

The Disability Blogger Weekend Link-up: reads for days!

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: A great way to help your child with disabilities: a circle of support

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, November 7, 2019

A great way to help your child with disabilities: a circle of support

So if you haven't yet seen Intelligent Lives, it's streaming here for free till November 23. The film is a wonderful showcase for the abilities of people with intellectual disability. There was one moment that made me really curious. Micah, one of the young adults the film tracks, is sitting at a table and chatting with people. Viewers learn that it is a Circle of Support meeting comprised of friends who advise Micah on his work, academics and social life.

In the scene, which happens before he meets the family of a girl he likes, Micah is reminded that sometimes people like to be asked questions. This is something I'm working on with Max, who tends to get so excited telling people about his interests (Los Angeles, to be exact) that he forgets to ask them stuff.

I had to find out more about what a Circle of Support is, and director Dan Habib directed me to a document on the Intelligent Lives website written by Micah and his family. Micah and his parents first created his Circle of Support when he was in third grade; he started a new one when he began attending InclusiveU at Syracuse University.

"When I want to do new things, have fun or need help or a ride, or want to try skiing or yoga or just want to hang out with my friends, I know my Circle is there to plan with me or support me," Micah writes. "Sometimes I have to make important decisions, like choosing a new roommate or thinking about my future goals. I'm more confident because I know I can talk it over with my Circle."

A Circle of Support (also called Circles of Friends or Connections) can happen at any time of a child's life. They're often started by parents working together with school staff like a social worker, counselor or therapist. They're meant to be lively and fun, not tedious meetings—Micah and his parents consider them "a party with a purpose."

The Circle of Support can be created in steps. You make a list of people to invite then have a first meeting where you explain the basics. The group can include friends of the family but also people from networks that tie in to a child or young adult's passions and interests such as local businesses, places of worship, sports, community centers, social media and more. There are ideally some peers, too. People in the Circle can participate in various ways; one might get together to go to a movie with your child, another might offer transportation, for example.

Such a smart idea, right? It for sure takes a village to raise a child with disabilities, but having a Circle of Support is a whole other level of encouragement, inspiration and inclusion.

You can read more about starting a Circle here and at Micah's site Through The Same Door.

Photo: Intelligent Lives

Wednesday, November 6, 2019

A teen helps share music through sign language

This Q&A is with Skylar Sherman, the oldest daughter of one of my best friends, Wendy. Skylar's been a gifted singer since she was a kid. She's learning American Sign Language and this summer, she created a great video that encouraged kids and teens to learn sign language, and enabled people who are deaf to enjoy a beautiful song. We finally got around to connecting about it. 

While I obviously lack objectivity, I'll just say that if more kids and teens were like Skylar and considered ways to include ones who are deaf, blind or physically or intellectually disabled, this world would be a way better place. 


How did you first get involved with sign language?  

The cantor at our congregation, Rodeph Sholom in New York City, has a son who is deaf. This led to a lot more inclusivity of the deaf community. Rodeph started having interpreters at services and events, and my cantor started an ASL choir that  was open for anyone to join. I ended up falling in love with learning to sign songs. I wanted to understand more of what I was signing, and I wanted to communicate directly with the woman who helped the ASL choir interpret lyrics into ASL. I asked my cantor how she learned to sign once she found out her son was deaf, and she sent me to the Sign Language Center. I've been taking classes on the weekends ever since. I have just completed level 6 and I will be starting conversational classes soon.

I know you've been doing some good volunteer work, too. 

One of my favorite activities has been volunteering at New York Deaf Theatre as an usher. I greet people as they enter the theatre, hand out playbills and direct people to their seats, communicating with deaf audience members entirely in ASL. I also worked as a camp counselor at CampedUp for kids ages 3 to 5 who are deaf and hard of hearing, and I volunteer for Shireinu Special Needs Services at the temple. I help create and organize services that are accommodating for kids and adults with special needs. I love sharing something so important with people who otherwise may not have the opportunity to experience it.

How did you first get the idea to do the music video?

I actually was first inspired after my mom showed me a video on your blog of the song A Thousand Years signed by mothers of children with Down syndrome and their kids. It made me cry because it was so beautiful. I showed it to my friend with whom I was learning ASL and we came up with the idea to start an ASL club at my high school and to make an ASL music video. Because LaGuardia is a performing arts high school, we love to share our art with as many people as we can. And I wanted to make art accessible to people who sign. After making that video, I decided that I wanted to bring ASL music to the other theatre community in my life, the camp French Woods Festival of the Performing Arts.

How did you make the video happen?  

This year, I was a Counselor in Training, so I had the opportunity to teach a class at camp. I got a music director, Roy George, to supervise. In addition to being one of my favorite people at camp, Roy also signs, so it was perfect. My pitch for the class, “Sign Language Through Song,” detailed what would we do every day. I said I wanted to teach basic signs to kids in camp and direct them in an ASL music video, so that kids who sign can enjoy the music. I made an announcement in the Dining Hall about the class. The first day, only two kids showed up. The next day there were four. And then people began telling their friends how much they loved the class, and more and more people began to come. Eventually we had a solid 12 to 15 kids who came every day. Roy and I would edit the clips at night, which took hours of work, but it all came together in the end.

Why did you choose A Million Dreams as the song?   

The biggest reason is because of the message: “A million dreams is all it’s gonna take; a million dreams for the world we’re gonna make.” The song, from the movie The Greatest Showman, is about how all you really have to do is dream big and then work for that dream. You can accomplish anything if it means something to you and if you persevere, you can change the world.

What did you learn doing the video? 

I learned not to be scared to bring something new to a community. I learned that kids love to share what they love with other kids. They were so excited that the song we did was “A Million Dreams” because they love The Greatest Showman and they want every kid to be able to enjoy it. I think that is a beautiful thing.

What sort sort of reactions have you gotten from friends and family?  

Many of my friends posted shoutouts to the video on their Instagrams, telling people to watch it. My ASL teachers commented “Wonderful job!!” and a camp music director said “This video literally gives me hope for the future.”

What do you hope other people learn from this video?

I hope people are inspired to promote inclusivity in the world. Roy George and I have discussed that we would love to have interpreters and performances that integrate ASL so that deaf and hard of hearing kids can participate at French Woods. This is the type of inclusivity I would like to help promote in the world.

Tuesday, November 5, 2019

That's my boy: part teen and part child. Who isn't?

Max brought this home from school the other day, a sum-up of who he is. I pored over it.

His favorite book: Fire Fighter Skills
Favorite thing to do in summer: camp
He wants to be: a fireman
He is good at: driving
His favorite subject: English
His wish is to: Move to Los Angeles
His favorite thing to do in winter: Disneyland
If he had a million dollars, he would: Buy a house in Los Angeles
His favorite things to eat: steak and pizza

It really captured Max.

At almost seventeen years old (!!!), he enjoys stuff other teens do—eating large quantities of filling foods like steak and pizza, traveling, going to camp. He has career aspirations. He is mature enough to know that he is good at reading and other English skills, and less so at math (chip off the old block).

And then, there's that child-like part of him in which he mixes fantasy with reality. Max can't actually drive, although he'd like to. It's something he's been mentioning recently, because he knows that everyone in Los Angeles drives. When we went out to dinner the other night, he stood in front of the driver's side door and asked, "Can I drive?" I think he'd be pretty good at it—well, if his bumper car skills are any indication—but I'm just not sure about the written test. When I googled, it seems like you can get extra time if you have special education needs, which gave me some hope.

I also pondered the fact that most of us have immature sides, although that can be more visible and questionable in a person with intellectual disability. Sometimes, I can't stop giggling (like when Max scared the speech therapist out of her wits), a habit I've had from childhood. I am also slow to admit when I'm wrong. Just like Max, I still have some growing up to do. Don't we all?

Max is a teen who's a mix of ages. And that's perfectly OK—although hearing "I'm moving to Los Angeles!" dozens of times a day is getting a little bit old.

Monday, November 4, 2019

That time he pranked the speech therapist and it was awesome

Because therapists, I respect and adore you. But even you might have to admit this was good. 

It all started Halloween night. Sabrina was out with her friends and Dave, me, Max and Ben roamed our neighborhood, scavenging treats and chatting with neighbors (that's one of my favorite parts, along with all the cute kids and the peanut butter cups). Gigantic dinosaurs seemed to be the trending costume, and Max took to shouting "BOO!" every time he spotted a kid in one. 

Seems like he still had that in his system at his standing speech therapy session on Saturday morning. He was in an unusually good mood, his longtime therapist had observed (she has known him since he was about three years old). Max decided they'd sit in the kitchen, and I was at the sink doing dishes. 

Jeri started by having Max chomp down on bite blocks, to help loosen up his jaw so she could elicit better sounds. I heard him say the most awesome "c" for "cake," a consonant he is capable of but really has to focus to say, and I cheered. 

Then they started talking about Halloween. All of a sudden, Max shouted "BOOOOOO!" and Jeri jumped out of her seat.

I couldn't help it: I cracked up. And I could not stop.


(Also see: Mom of the Year.)

Luckily, Jeri has a good sense of humor. 

"Max, you scared me!" she said, laughing. 

"Yeah!" he said.  "BOOOOOOO!"

"Hey, Max, I think that's enough scaring!" I said, and he grinned wickedly.

Sometimes, Max get difficult about doing therapy. I don't blame him. He's been in speech, physical and occupational therapy for his entire life, and while the therapists are great at engaging him (lately, they talk about his wish to move to California) and he's typically good humored, he's just not always in the mood. Because: he's human! But man, he was in a mood this weekend. 

File under: Stuff you never considered your child wasn't doing (pranking someone) and then they do it and you are all, wow.


Image: desenio poster 

Friday, November 1, 2019

The Disability Blogger Weekend Link-up: Post-Halloween edition

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: Halloween through the years and how far this boy has come

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!

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