Thursday, October 31, 2019

Halloween through the years and how far this boy has come


"Halloween is my favorite holiday!" Max announced the other day, out of the blue. He was genuinely excited to go trick-or-treating. His costume: a Los Angeles baseball cap. Because he's hoping to move to L.A., and wants to make like he's a resident.

Holidays are markers for me of Max's maturity. Because they happen just once a year, I get real perspective on how much he's progressed since the last celebration. This is especially true of Halloween, which Max struggled mightily with when he was a kid: It was too overwhelming, too scary, too tiring—sensory overload central.

As with many things, I had to accept that Max wasn't going to do them the way other children did. Eventually I realized that it just didn't matter, because Max was living and enjoying life on his terms, whether or not he downed candy, attended our town's Halloween parade, went trick-or-treating or wore a costume.

On Halloween 2003, when Max was 10 months old, a pumpkin costume looked especially great because it matched the orange tint of his skin owing to (no joke) his fondness for sweet potatoes.  I remember being so excited to dress him up, like any other tot. He may have been developmentally delayed but his cuteness was right on track. 

On Halloween 2004, he went for a drive around the neighborhood as other kids trick-or-treated around us. The town's Halloween parade had freaked him out and he wailed and cried. He didn't want to put on a costume. I remember feeling so sorry for our little guy that he couldn't even enjoy candy, a basic right of childhood. Back then, so much made me despair.  

In 2005, Max had the sniffles so he stayed home with our sitter and we took Baby Chick Sabrina out for treats.

In 2006, Max was all about Thomas the Tank. We cruised around the neighborhood in a wagon, and while he didn't get exactly what was going on, he was pretty chill. Progress!

In 2007, Max dressed up as his favorite character, Lightning McQueen. It was the first of several obsessions to come; we wore out several DVDs because he watched it so much. Later, he would progress to being really into the movies Cars 2, along with every single piece of merchandise associated with it. 

In 2008, we got more mileage out of the Lightning McQueen getup and Max worked really hard at grasping candy in a bowl and handing it out to kids who stopped by. I was so proud of him. LOOK AT THAT PINCER GRASP, PEOPLE!

In 2009, when Max was obsessed with the color purple, I made him a car costume out of a purple shopping bag and it didn't much look like a car but hey, it was the thought that counted.

 
In 2010, Max was in his car wash phase, so I made a car wash for him out of a red wagon, strips of chamois cloth, brushes and a bubble blower. He was seriously into it. He even participated in our town's parade (at his request)—and won a medal for cutest costume. A major Halloween milestone.

Squeegee girl

In 2011, Max again dressed up as Lightning McQueen, tried to swipe another kid's purple crayon costume and generally had fun. It was the first time he got into trick-or-treating. He tried so hard to articulate the words "trick or treat" and while it was hard to discern what he was saying, the attempt was awesome. That's generally true of kids with disabilities: If at first they don't succeed, at least they're trying.

Halloween 2012 was a wash, literally. We were holed up in a hotel because power was out in our neighborhood from Hurricane Sandy and trees were downed everywhere.  

By Halloween 2014, Max had decided that he wanted to be a firefighter. So he put on his Fireman Max hat (the one he wore everywhere, except to bed), toted around a bucket and collected candy. He understood the game—get as much as you can—even if he didn't eat any of it. 

Halloween 2015 was special: We'd just welcomed Ben into the world. Max dressed up in the firefighter jacket our local fire department had given to him for his birthday. Sabrina went as The Joker. And Ben, delicious Ben, was a peapod. OMG. 


It was worth having a third child for this costume alone.

2016: Fireman Max, for the win! He really enjoyed telling neighbors that he was going to be a firefighter when he grew up. 

In 2017, Max owned his big brother status and pushed Monkey Ben around to trick-or-treat

In 2018, this actually happened.

A preview of Halloween 2019.  

This boy has come so, so far. 

He is my treat every single day. 

Wishing you a Happy Halloween, however you celebrate. 

Wednesday, October 30, 2019

Anti-monster spray and other ways to unspook Halloween for kids with special needs


For years, our family didn't celebrate Halloween like other ones did—Max was terrified of our town's parade, didn't like how costumes felt and could have cared less about candy because he had trouble chewing it. Now he's come around (although he still doesn't do candy), but for many families with kids that have special needs, Halloween can be one scary time of year.

Theresa Kruczek, Ph.D., a professor of school counseling and school psychology at Teachers College at Ball State University in Indiana, shares some helpful tips to help kids with special needs feel less spooked.

Arm kids for success

What you do: Fill a spray bottle with water. Optional: add a few drops of a calming essential oil your child likes. What you tell your child before you spritz: Monsters don't like things that smell good, they only like disgusting, stinky smells. So we can use anti-monster spray to keep them away.

Help kids understand that ghosts and goblins aren't real
"Children with developmental delays and intellectual disability may have trouble separating fantasy and reality, and might think scary elements of Halloween are real," says Kruczek. So discuss pretend vs. real and provide concrete examples of things the child is familiar with that are pretend –for example, you can say something like, "When we pretend to play house and you pretend to be the mom or dad, you’re not really the mom or dad—you’re just pretending. It’s the same way with ghosts and ghouls—that’s just people pretending to be scary things and it’s not real." You can also ask friends and strangers to take off masks so children understand there's a person beneath the costume.

Try some exposure therapy

"Expose children to scary stuff in the light of day to help desensitize them and help them anticipate what they might encounter on Halloween night," recommends Kruczek. For example, go on a “field trip” to a store that carries lots of decorations and take in the various sights and sounds. 

Practice positive imagery

That's shrink-speak for "happy thoughts." The idea is, when a child is feeling scared, you redirect them to take slow, deep breaths and then encourage them to think about positive images. It might be a good memory or a movie, toy or activity that they enjoy. "Kids can think about senses associated with the image to really tap into the vibe—what they see and hear, what it feels like, if there are any smells or tastes," she says. "The trick is to have them practice ahead of time, before they encounter something scary."

Bring along a comfort buddy

If a child has something they use at home to self-soothe or calm, like a stuffed toy or fidget, encourage them to take it along on both the field trip and trick-or-treating.

Celebrate Halloween your way

This is something we learned to do at our house when Max was a little guy. We'd play in our backyard, down ice-cream and hand out candy. Some other families and towns band together in school or church parking lots for a Trunk or Treat—they deck out their cars in decorations, and kids go from car to car to gather loot. It's a calmer, more chill Halloween, and especially helpful for kids who can't walk long distances or navigate hills. A Facebook friend of mine, Sherri-Rose, just posted about her town making this happen.

"Surrounded by the generosity of some of the nicest and creative families in town, the spirit that only teenagers can bring, and the sun shining after the rainiest of mornings, a father told me that this was the first time his school-age son has ever been able to trick or treat. For once, my Halloween tears were not caused by disappointment, but rather pride, joy, and thankfulness."

Image: Oriental Trading Co.

Tuesday, October 29, 2019

Melissa Blake is showing everyone how to be their best selfie


Like many people, Melissa Blake, a freelance writer, blogger, disability advocate, has never been shy about posting selfies in social media. "I've always felt it's a great way to capture a moment in a genuine way..no camera tricks or filters, just you being you," she says. But after a recent incident, she is even more into them—why she started the Twitter campaign #MyBestSelfie.

You may have read what recently happened. After Melissa wrote an op-ed for CNN, a conservative YouTuber mentioned her in a video and a troll left a nasty comment, as is the way of trolls: "Melissa Blake should be banned from posting pictures of herself." Melissa had an excellent response. Actually, three of them.
Melissa was born with Freeman-Sheldon Syndrome, a genetic bone and muscular disorder. She's always loved to write. "Growing up," she notes on her site, "writing was always a way for me to express myself and explore my world beyond the confines of my disability." She's enjoyed great success and yet, she told me in a recent email exchange, "I learned early on that being a woman writer, especially one with a disability, was going to open me up to trolls on the Internet. People respectfully critiquing my work has never bothered me. Instead, what's bothered me the most is people going right for attacking my appearance. No mention of what I wrote...just making fun of how I look. Those are the sorts of bullying that I've received over the years and while it still stings, I try my best to let it roll off my back."

"Do I think those trolls will ever see my tweet? Probably not," she continues. "But maybe that's not really the point. Maybe the point was to do it for me and for other people who experience any kind of bullying, whether online or IRL. And WOW, people sure have responded to my tweet. I've heard from people all over the world—in Brazil, England, the Netherlands, Australia—and they all told me how much they relate to my tweet and how much they appreciated it. I'm so glad that my tweet sparked a conversation and helped make people feel less alone."

Melissa's message of celebrating who you are was instilled in her during childhood. "I credit my parents for encouraging me to believe in myself and be as independent as possible despite my disabilities," she says. "They always told me to never let my disability stop me from doing what I wanted in life. They taught me how important it is to not let others' cruel words impact how you see yourself."

I asked her what advice she'd give parents to encourage their children to love themselves as they are. Her response: "It's so important for parents to model that sort of behavior for their children. Kids see everything, so if they see their parents being hard on themselves or being overly self-critical, they're going to pick up on that and internalize it. "

I also asked what advice she'd offer parents for teaching their children to accept others as they are. "Parents should always reinforce that disabilities are nothing to be afraid of—that people with disabilities are people who maybe use a wheelchair to get around or use a walker to go shopping," she says. "I've never been insulted when kids ask about my disability in public. I'd rather them ask than just point and stare."


Monday, October 28, 2019

Cool idea: Raise money for a cause with your awesome Halloween display


Every neighborhood has at least one awesome Halloween display that people flock to see. A teen in New Jersey who builds decorations year round for his extravagant lawn display is doing something especially genius on October 31: he's asking for donations to benefit programming for kids with disabilities.

Matt Berger, a high school sophomore in Livingston, New Jersey, started making and displaying Halloween decorations when he was seven years old. Over the years, he learned the how-tos for making wood cutouts and creepy figures by scouring YouTube videos and playing around with tools, reports Elise Phillips Margulis in Tap Into Livingston. The result is a creepy-good combo of ghouls, zombies, ghosts, fog machines, inflatables and more.

New additions to his home's lawn this year include a seven-foot wood skull, fences for a graveyard and a donation box. Matt decided to raise money for Friendship Circle, an organization that offers programs and activities for youth with disabilities. (Max has been going for years and loves it.) If you know that hordes of parents and kids are going to be stopping by your house, it's pretty spooktacular to get them to donate to a good cause while they're there. 

Our Halloween display currently consists of pumpkins gnawed at by squirrels, dying mums and a somewhat rusted metal ghost. But we are doing a walkathon next weekend to benefit Friendship Circle, if you're up for making a donation—here.

Photo: Elise Phillips Margulis

Friday, October 25, 2019

The Disability Blogger Weekend Link-up: your post BFF


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: Someday, you will look at that school photo and not believe your eyes

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, October 24, 2019

Someday, you will look at that school photo and not believe your eyes


School pictures always make you realize how big your kids were getting, and this year was a shocker. In real life, Max still looks on the younger side but in the photo that arrived home from school, he was downright man-like. It made me all sentimental. In some ways, it felt like he grew up so fast but then I think back to the early years, when timed seemed to pass so slowly and progress never came fast enough. 

One of the hardest parts of raising a child with disabilities is that you so desperately wish you knew what they will someday be able to do. I had a constant undercurrent of anxiety: Would Max crawl? Walk? Talk? Eat on his own? Write? Read? 

But of course, no teacher, therapist, doctor or specialist of all specialists had answers. I was told by the neurologist once that was a good thing—he basically said that if we were being told to wait and see, it meant it was clear Max had plenty of potential. That offered some reassurance, yet didn't totally satisfy me. Because: I. Just. Wanted. To. Know.

Only the passage of time helped. I just had to make it through those first few years, when I struggled to adapt to parenthood and to the realities of having a child with special needs and kept torturing myself by comparing Max to other children. I always say: As Max matured, I did, too. I learned not just that he would do things on his own timeline but that he might not do them at all, and that was OK—something that would have been impossible for me to accept in his early days. I stopped wishing for what Max could be, and learned to accept him for who he was. I abandoned the typical milestones on the side of the road we traveled, and focused on the child by my side.

And now, here's my boy, nearly 17. It may be hard to believe if you have a tot or young child with disabilities, but someday you will look at your grown child's school photo and only feel awe for how far they have come. You will see a child who has matured in their own way, with their own kind of brightness, abilities, talents, skills and charms, the kind you couldn't have imagined or hoped for and certainly nobody could have predicted.

And you will look at that school picture and be so proud and wowed and not totally believe your eyes. Because there is that boy or girl you once obsessively worried about, looking like they own the world. And they do.

Wednesday, October 23, 2019

Enjoy this viral video but know: Parents shouldn't be the only people enabling children with disabilities


Yesterday, a friend sent me a viral video of a mother pushing around a child on a contraption with a skateboard. I surfed the Internet to find out who they are. The mom is Laura Patron, a writer and advocate, and the boy is her son, Joao, age 7. He has a rare autoimmune disease that caused a stroke and brain damage; they live in Brazil. A year ago, staffers at a local physical therapy center called Neuro Studio created the adaptive skateboard for him with bungee cords, reels and metal rods. A civil rights activist posted the video on Twitter, declaring Laura Mother of the Year.
As the mom of a child with disabilities, I was thrilled to see this boy enjoying himself and I also felt this mom's joy. "Because I'm always wondering how to make Joao feel freedom. And fly like this, standing, with wind in the face, with friction in the feet," she wrote on a Facebook page she created to raise awareness and fund treatment for Joao.

The Internet also felt their bliss. But here's what I wonder about the masses seeing videos like this: Does it unintentionally make them think that it's parents' responsibility to help children with disabilities enjoy activities? Do most people just wallow in the feel-good moment then proceed with their regularly scheduled lives, never pausing to think about enabling and including children with disabilities? Probably. Until I had a child with disabilities, I wouldn't have thought about that, either.

The truth is, every single day and in every single way, we moms and dads do whatever we can and rope in whatever experts we can to help include our children. We push for them to be included in extracurricular programs, sports and classes and when we're told no, sorry, not possible, we push some more. It's not because we're saints—it's because we have to do it since nobody else is making it happen.

But here's the thing: It should NOT be parents' sole responsibility to make sure our children with disabilities can participate in all that life has to offer. Inclusion is something each and every person on this planet can make happen. And while big things like building a skateboard contraption are awesome, plenty of everyday opportunities exist.

You could use viral videos like these as a conversation starter with a child to show how kids with disabilities enjoy skateboarding and having fun in the park, to help them better see that children with disabilities are similar to them. You could also talk about how children with disabilities may move, speak or behave differently than they do, and that's cool because our world has people of all kinds and that's what makes it awesome.

You could encourage your children to chat with kids with disabilities at school, in the playground, at birthday parties or wherever, assuming a child wants to be approached. Or to just say "hi."

You could invite a child with disabilities over for a playdate with your child—and make it a regular thing, not a one-time offering.

You could see if a peer with disabilities would like to join your child's gym or dance class, and help pave the way.

You could ask your place of worship to do an inclusive service involving youth of all abilities.

You could pay a neighborhood child or teen with disabilities to do a small job for you.

You could email your town to get an adaptive swing or other equipment in the playground.

You could give props to a local business owner who has hired a person with disabilities for a job. Because while this should be a typical thing, it doesn't happen nearly often enough.

I asked people on my Facebook page what they would like others to do to include kids and adults with disabilities. Here's their wish list:

"Attempt to include our kids in after-school or other extracurricular activities or at least let us know if these opportunities are open to them without having to ask."—Lisa K.

"If you see your child starting at someone with disabilities, do not tell them 'don't stare.' This gives children the idea that people with disabilities are a bad thing and to avoid these people. Instead, tell them to go say 'hello' or ask them if they have any questions about people with disabilities. Drives me nuts when adults do this and I see it regularly."—Brian

"I try to engage the parent or child if they are asking questions or pointing at Matthew. I ask Matthew if he can say hi to the child and he might wave at them. That usually breaks the ice."—Brandi

"Do not yell at me when I point out how your business is not ADA compliant."—Teresa Brown

"I wish more grade-school teachers and PE teachers received more training on encouraging inclusive play opportunities. Playing is how kids make friends starting in preschool and kindergarten. The goal should always be to find a way for a child with a disability to join in the game or role play, instead of finding something different for them to do."—Tina

"Invite them to eat lunch at their table."—Anna

"Look at disabled people, acknowledge disabled people, greet and engage with disabled people, and teach your children to do the same."—Elizabeth

"Golden rule: Treat others the same way you want to be treated."–AZ

"I wish more special needs and civic groups were more inclusive with wheelchair users. I feel like the pendulum has swing to 'special needs' meaning ASD. There are still many physical obstacles and barriers in all communities. Steps, narrow doorways, van accessible parking spots, etc."—Vanica

"Teach kids that those with disabilities have something to offer, too, just like everyone else. Inclusion means valuing those with disabilities as a valid part of the group, not just it's kind to include someone. In my observation, sometimes kids without disabilities are reinforced in thinking that they are good for 'helping' the child with disabilities, as opposed to taking the opportunity to form a true friendship."—Jessica

"I wish high-school coaches were more open towards kids with special needs being part of a high-school sports team in some way."—Catherine

"Hands down, jobs for adults. There is a place for adults with disabilities in most work environments. We all benefit from inclusion. Why aren't employers tapping into this huge workforce pool?"—Jeniffer

"My son went to a public high school. If one kid asked him to a school event, he would have gone in a heartbeat. He wouldn't have stayed for the whole thing, so the commitment would have been minimal."—Anne

"Don't pat any wheelchair user's head, ever. Come outside if you have stairs during Halloween and greet everyone. Always presume competence and intelligence. Introduce yourself and don't ask personal questions ever. Wait and pause during the conversation and speak to the person, and not at them or to their caregiver. Disability and diversity are natural, and enrich a community through interdependence. Remember, we are more alike than different, be kind."—Ivana

So please, for the sake of my son and disabled children, teens and adults everywhere, I'm asking you not to just be a bystander and viewer of viral videos but to find ways in your life to include people with disabilities. I'll leave you with this quote floating around the web, source unknown:

Accessibility is being able to get in the building.
Diversity is getting invited to the table.
Inclusion is having a voice at the table.
Belonging is having your voice heard at the table.

Tuesday, October 22, 2019

A gym cancels a birthday party for a child with disabilities and gets sued


How's this for discrimination: You book a birthday party at a local gym for your child with disabilities who's turning seven You sign an agreement that states if a guest has "special needs," they must have a "Professional Certified Shadow" be responsible for that guest, regardless of the nature of that child's disability. A few days before the party, the gym contacts you to confirm details, including the final guest count. You mention that a few friends from the school for children with disabilities that your kid attends will be coming. The gym refuses to let parents serve as shadows, and does not offer staffers to help. Then it cancels the party.

Yep: blatant discrimination. The parents sued that New Jersey business, Paragon School of Artistic Gymnastics. After an investigation, the New Jersey U.S. Attorney's Office concluded that the gym violated the Americans with Disabilities Act. Per Title III of the ADA, places of public accommodation like Paragon must make reasonable modifications to policies and practices to allow people with disabilities to participate in its activities. It's also illegal for a place of public accommodation to impose additional eligibility demands or a surcharge on a person with disabilities who wants to participate in services. 

Per the settlement agreement, the gym will now ensure that children with disabilities will be given full and equal opportunities to participate in parties and programs—and it clearly states that on its website.

All gymnastics schools should have policies like this. Ditto for dance schools. Too often, though, that's not the case. Over the years, I've heard a number of parents tell of children with disabilities being denied access to gym and dance programs.

I know, it's mind-boggling that a business that caters to children would so blatantly try to shout out kids with disabilities. It's also defies belief that they thought they could get away with it. But the law's on our side. And hopefully, perceptions that it's difficult or impossible to accommodate kids with disabilities. A few years ago, when Max saw a dance performance and decided he wanted to try tap-dancing, I reached out to the owner of a local dance school and mentioned that I had a child with disabilities interested in taking tap lessons. She didn't ask a single question about Max's disability—she just said "yes." We decided private lessons would be best, and he ended up enjoying a bunch of them.

Want to encourage a business to be more accommodating? Check out this post by Torrie Dunlap, CEO of Kids Included Together, on 8 ways to include kids with special needs in programs, events, camps, classes, wherever.

If you believe your child has been a victim of discrimination, you can file a complaint with your state's Attorney's Office (here's a state-by-state listing).

Image: Flickr/Philip Morris

Sunday, October 20, 2019

The potential of people with intellectual disability: Watch this documentary


As the mom of a teen with intellectual disability, I know just how bright Max is and how much potential he has. Unfortunately, not everyone sees that. People with ID are haunted by stigma and old-school attitudes and a culture that places undue importance on IQ scores. Yet given the right support, people with ID can be included in education, employment and relationships and thrive, as disability rights filmmaker Dan Habib shows in his acclaimed documentary INTELLIGENT LIVES. It will be broadcast on public TV for the first time on Tuesday October 22 on the WORLDChannel series AmericaReFramed, at 8 pm ET / 7 CT/ 9 PT (find your local PBS channel here).

Dan is dad to Samuel, who has cerebral palsy (you may recall his first film, Including Samuel). His latest film is narrated by actor Chris Cooper, whose son Jesse had CP. INTELLIGENT LIVES follows young adults: There's Naieer Shaheed, an artistically gifted high-schooler who has autism; Micah Fialka-Feldman, an outgoing guy who attends InclusionU at Syracuse University; and Naomie Monplaisir, a cheerful young woman trying to find a job.

Naieer painting (two of his prints—Sunflower Blue and Malcom X—are for sale at intelligentlives.org, and all proceeds benefit the art program at his high school)

The documentary makes it clear that IQ testing does not reveal much about a person's abilities, talents or potential, and asks society to broaden its perspective of what "intelligence" means. I found myself getting emotional as I watched it because I've been down this road many times. 

Micah at school

I particularly appreciated the scene in which Micah is advised by friends not to discuss politics when he visits the home of a girl he's into. Her dad ends up asking Micah who he wants to be president, and Micah hems and haws. It's possible the girls' parents assumed he didn't get the question, but Micah prudently responds, "I'm going to think about it, I'm not sure yet." As he drives home and talks about the girl, he notes, "I just want to make sure that she knows how to advocate for herself." Now that's intelligence.

Chris Cooper, Marianne Leanne Cooper and their son, Jesse

 Director and producer Dan Habib

I had the opportunity to ask Dan a few questions.

What do you hope this film achieves when people see it on public TV?? 

I love the medium of documentary film because I get to take people deep into the lives of these trailblazers that they might otherwise never meet. Many young adults, families, and educators are unaware that students with intellectual disability are being fully included in high school and college in hundreds of schools across the United States. Employers may not know that people like Naomie, Naieer and Micah can thrive in the workplace. I hope INTELLIGENT LIVES shows viewers the power of opportunity and high expectations.

The central premise of the film is posed early by Chris Cooper. He asks, “Can any attempt to measure intelligence predict a person’s value, or ability to contribute meaningfully to the world?”  If viewers examine that question, I think the film will raise expectations for people with intellectual disabilities —throughout our society.

I also hope that students and families learn that IQ testing does more harm than good. I understand that IQ testing is intended to be just one tool in an overall assessment process that includes many other qualities and measures, like adaptive behavior. But I speak with hundreds of families and educators all over the country and their experience is that the IQ score is the measure that carries more weight than any other. A few points on the score can be the difference between segregated education or inclusive education. Imagine your whole educational path being determined by a couple of points on an IQ score!

It has a big impact on adults as well. A family in Pennsylvania told me that their son—who has cerebral palsy, is a prolific communicator through eye gaze AAC technology and goes to college— must have a note signed from his doctor every year that his IQ is below 72 in order to continue to maintain his adult services. There are better alternatives for determining service eligibility, like the Supports Intensity Scale (as long as—like any tool—it is implemented properly).

Can you share some of the ways you've seen this film change perceptions of people with ID?

My Inclusive Communities project at the Institute on Disability at UNH is part of our nonprofit organization, and my work is funded in large part through grants. So we make sure to track the measurable impact from the films and the associated educational materials we create for each project. We surveyed thousands of people who saw INTELLIGENT LIVES, and the results have been affirming:
• 98% of viewers indicated that INTELLIGENT LIVES helped them understand the concept of “presuming competence”—that everyone has talents and is a full and valuable participant in society.
• 97% of viewers indicated that INTELLIGENT LIVES helped them understand that intelligence cannot always be measured, such as social/emotional intelligence, artistic intelligence, etc.
• 88% of viewers indicated that seeing INTELLIGENT LIVES made them more likely to interview and/or hire a young adult with a disability for a part-time or full-time job.

We also collect anecdotal examples of impact from film screenings. One moment stands out. Film “star” Naieer was part of the post-film panel at the premiere in my hometown, Concord, NH. Naieer, who has ASD, stood before 500 people in an elegant performing arts center working so hard to answer questions. At one point, for a full minute, the entire audience waited for him to give his answer in a tightly constructed sentence. I don’t honestly remember what he said. What I remember was the unconditional feeling in that room that whatever Naieer had to say was worth waiting for. And that it was not Naieer’s problem that he had trouble getting the words out—it was society’s problem that we are typically so impatient in our communication. Oh, and after the screening Naieer had an exhibit of his paintings and sold out in about 20 minutes, walking away with about $2000 and a huge smile!

This film focuses on people with intellectual disability who do not seemingly have physical disabilities, like my son does. People who have both physical and intellectual disabilities can face additional challenges with inclusion in school, at work and in life.  Can you speak to possibilities that exist for them that you may have observed working on the film?

I can appreciate that people with both intellectual and physical disabilities may face a tangled web of low expectations and stigma. But through my documentary work I’ve found that the most progressive, inclusive educational (high school and college) and employment settings don’t think about the labels. They think, "What type of supports does this person need to be successful? And how can we universally design the environment so people of all abilities can be successful?” From the beginning of production on this film, even before I found the subjects to film, I was committed to showing the most cutting edge examples of inclusion in high school, college and employment. That focus led me to the three central characters and the remarkable communities around them. They all deserve the spotlight, because the approaches we see at these schools and businesses need to be replicated more widely.  I believe deeply that people of any ability should have opportunities for inclusive education and competitive, integrated employment.

What have people with disabilities taught you about PWD advocating for themselves?

I’m not a person with a disability, so I don’t claim to speak for people with disabilities. But I can amplify the perspectives of advocates through my films and events.  Whenever Samuel presents with me, he totally steals the show. Same for the dozens of events when Naomie, Micah and Naieer (and sometimes their family members) were able to join me the post-film discussions at events. But the film has been shown at more than 400 events in 47 states thus far, so they can’t be everywhere. I tried to commit to the standard of “nothing about us without us” as much as possible for the rollout of this film, so we’ve recruited dozens of youth with disabilities to take part in post-film discussions (and many community and university screening hosts have done the same without my involvement). To see the power and confidence that comes from a young adult with a disability sharing their life experiences with a room packed with strangers has, for me, been the most moving part of our year-long screening tour.

Can you share reactions from Micah, Naieer and Naomie to seeing themselves in the film?

I’ve seen joy and pride and excitement from each of them at our event—and amazingly, very few nerves when they get up on that stage. I made sure to show each of them (and their families) the film before it went public. I don’t give my film subjects veto power over the content, but I make sure they have a chance to tell me if there is anything in the film that is inaccurate or represents them in a false light.  I think those early preview screenings were empowering for each of them. They’ve told me that the film, and the reaction they receive at events, makes them feel proud that their lives and accomplishments are worth highlighting and celebrating.

Can't catch the broadcast? Intelligent Lives will stream for free for one month online at World Channel, here, starting October 23.

Go to intelligentlives.org to learn how to host a screening of the film and access four free postsecondary transition films and an extensive resource library.  You can continue to hear about the film’s reach and impact, plus updates on the Naomie, Micah and Naieer, on social media:

Facebook: intelligentlives • Twitter: @IntelligenceDoc • Insta: @danhabibfilms

Also check out this guest post by Dan Habib:

10 things everyone should know about hidden disabilities

Friday, October 18, 2019

The Disability Blogger Weekend Link-up likes you


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: Celebrating progress, even the dubious kind

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, October 17, 2019

Take a selfie of yourself helping your child with disabilities: Here's why


Someone in my local moms group recently shared an awesome Facebook post that made sentimental. Mom Jess Wolf had posted a photo of herself with her children in a grocery store, and this caption:

Sweaty, baby strapped to my back, three year old insisting that her belly hurts and NEEDS her donut that she forgot to eat after lunch, 6 year old using everything in sight as a weapon, 7 year old wanting to spend the only dollar he has. This. This was my trip to the grocery today. While I was bagging up my groceries (thanks Aldi) and trying to quietly keep from losing my ever loving sh*t, the lady next to me asked if I have one of those phones that takes pictures. Trying not to convey my annoyance to someone else adding to the million questions that make up my day, I replied that, yes I do have one of those fancy phones. She asked to take a picture of me with the kids. At the grocery. Together. She told me that she wishes she had photos of herself doing every day things with her kids. She validated the fact that a simple grocery trip is hard. She told me that what I do matters. She doesn't miss what made the days hard, but she misses what made them sweet. I will always cherish this picture and the message that came with it.

As soon as I read it, I thought, SO true. I have plenty of photos of chubalicious baby Max, but none of the two of us doing the main everyday activity of his early life: therapy. Not. One. Single. Photo. All those hours I spent bicycling his little legs and massaging his arms and hands are only in my memory. All I've got is a faded Polaroid above of him and his beloved Early Intervention occupational therapist at a holiday party.

Back then, it would have never occurred to me to have Dave snap a shot of me helping Max along, or to snap a shot of Dave doing the same. For one, like the mom above, it was such a standard part of life that I didn't think twice about it. Also, Max's developmental struggles were anxiety-provoking to me, not something I'd want to record. Deep down, I wasn't ready to fully understand or embrace disability. I had this fantasy that he'd turn out to be "OK" and didn't want proof of my teaching him to crawl by crouching over him on the floor and moving his limbs for him, showing him how to hold a spoon, getting him to grasp a ball. This also explains the lack of early photos of him wearing his hand splints or foot braces.

Oh, man. How I wish I had some of those photos. To remind myself of just how far Max has come. And to serve as a reminder that me, myself and I helped him get there.

Max has progressed because of his own determination, motivation and sheer luck. Max has also come a long way because of me and Dave.

Do any of us give ourselves enough credit for all that we do for our children?

Nope.

When I was a new parent, I constantly ached to do more for Max and felt guilty about it; I couldn't accept that I was doing the best that I could. I lacked the perspective that Max would power through to milestones only when he and his body were truly ready, and that giving Max tools, support and lots and lots of love were the fuel that could help him progress.

Someday, like me, you will have a teen on your hand who has thrived and developed in ways you never thought possible. And you will wonder why you never snapped those photos. So moms and dads, I'm telling you: Take selfies of yourself doing therapy with your children, sitting together in the doctor's waiting room, helping them crawl or doing whatever it is you do. (Granted, it's hard to take a photo of yourself stalking the insurance company for not reimbursing you for therapies.) Know that you are doing a great job. Even if you don't feel it now, someday you will look at those photos and it will all be clear to you.

Wednesday, October 16, 2019

Celebrating progress, even the dubious kind


I don't sit around waiting for Max to progress. I no longer have those "If only he'd do ____ and ____ an ____" thoughts like I did when he was younger, because I know that Max will develop on his own timeline, and nobody else's. But when progress happens, I get giddy. Bluebirds circle my head, singing. Each and every time, I am seriously excited...even when the progress is dubious.

That's what happened at Ben's birthday party this weekend, at a crafts studio. After his friends from school made cardboard rocket ships and painted a mural, it was pizza and cake time. I carried the ice-cream cake in from the back, placed it on the table and everyone sang "Happy Birthday." Except when it came time to blow out the candles, Max suddenly leaned right over the table and blew out every single one. A cake bomb, you could call it. Ben burst into tears.

"Do-over!" I announced, hugging him and shooting Max a look.

"Don't blow out the candles!" I told Max as we relit them, everyone sang Happy Birthday once again, Ben happily did the job and Max held himself back.

Obviously, this was rather obnoxious of Max. For good measure, he'd told Ben, "No California for you!" which is what he says when he wants to be mean. As in, "I'm going to move to California and YOU'RE not!" I guess he didn't appreciate Ben having all the attention.

But as I sliced the cake it occurred to me:

MAX BLEW OUT THE CANDLES.

OMG.

MAX BLEW OUT THE CANDLES.

And I had to smile. A closer review of the video made it clear that Max had exhaled through his nose, not his mouth. But still: this was a feat of breath control previously unseen. He'd never blown out all the candles on his own cakes.

It wasn't something to congratulate him for. Later, we talked about how when it's someone else's special time, Max needs to respect that.

"Child blows out birthday candles with nose" is not a milestone you would read in any development book.

But. Still.

#PROGRESS

Tuesday, October 15, 2019

Date night


"I want to go to the movie with you!" Max said.

Wow. I felt flattered. It was early evening Saturday and Dave wanted to go see The Joker, but I had no interest. Max overheard us talking and gallantly stepped up to accompany me to a movie.

One of the ways Max lives the teen life is going to the movies alone. Dave or I will drop him off at our local movie theater, where the staffers know him by name. We pick him up at the end. We've come full circle because it's where—tentatively and then triumphantly—he saw his first movie in a theater, Monsters University. That was six years ago.

Max is flexing his independence, same as he does when he takes the occasional walk by himself around our neighborhood. I also like going to movies by myself, and I would have been perfectly content seeing Downton Abbey in the movie theater alone that night. But I loved that Max offered to go with me. He'd actually seen a bit of it already a couple of weeks before—he was supposed to see The Abominable Snowman, but Dave accidentally left him in the wrong theater only to have Max text him in about 15 minutes later, "Wrong movie!"

We settled into our seats. I'd seen a few seasons of the TV series, so I knew enough to enjoy the characters; Maggie Smith is my fave, and she did not disappoint. Max blurted "London!"—he was excited for the British setting, because we'd visited London in April and he had an awesome time. Then he sighed heavily halfway through the movie, and I could tell her was getting bored.

"Are you OK?" I whispered.

"Eh!" he replied.

"Do you want to leave?" I asked.

"It's OK!" he said.

That's typical Max, making sure that I was happy. What a great date.

I did have a few pangs of other teens go out on real dates on Friday night. Max isn't yet into dating, but then, maybe he doesn't know what he's missing. I'm going to see if he'd like me to arrange something with a girl I know he's into, then drop them off at the movies. As much as I enjoyed date night with my boy, I'm betting Max can do better.

Monday, October 14, 2019

This is four


Four is loving trucks and tutus and Hot Wheels and blocks and Barbies and Batman.

Four is announcing "I have a meeting today!" when you go to school.

Four is being cool.

Four is getting excited to meet Cookie Monster

Four is wanting to be first for everything—getting into the car, walking into the restaurant, walking into our house, getting the first piece of cake.

Four is being a tattletale about everything: "Daddy got crumbs on the floor!"/"Max left pee on the seat!"/"Sabrina said a bad word!"

Four is saying, triumphantly, "I'm right and you're WRONG!"

Four is articulating your emotions—in particular: "I am sad!" / "I am mad!"

Four is using furniture for gymnastics. 

Four is your pouty kissy lips even poutier and kissier.

Four is having a different favorite color every single day.

Four is rushing upstairs to brush your teeth if your stomach hurts because you believe you are brushing the germs away.

Four is dance moves.


Four is figuring out the world in a way that makes sense to you: green nail polish is made out of green apples, marshmallows are made from yogurt, the sun is made of lemons.

Four is misusing pronouns and saying "I am playing with he!" and "I don't want she to leave!" and making up words, like when you were out with Daddy and he got a flat tire and you came home and announced, "Daddy's car bursted!"

Four is asking to stay in the bath for 10 more minutes and asking to play for 10 more minutes and asking to stay up before bedtime for 10 more minutes. And then, asking for 10 minutes more. Repeat.

Four is still being a good sport when I tuck you in...then climbing into our bed every night around 2 a.m. every night.

Four is adoring your big sister. 

Four is adoring your big brother, too.

Four is having just a few bits of toddler mispronunciations left, and the day you stop saying "lello" for "yellow" and "lesterday" for "yesterday" will be a very sad day for me.

Four is the giant grin on your face whenever you get a lollipop, a fruit roll-up or anything sugary.
Four is saying "I don't bite anymore!" because you're proud of yourself for growing up. But not being beyond giving your brother the occasional pinch.

Four is liking tennis and soccer but being afraid of swimming because you don't like that your feet can't touch the bottom of the pool.

Four is picking up phrases from your teen sister.  


Four is shouting "POOP!" just because. 

Four is reimagined reality, like when you recently announced: "When Max was a baby, I used to hold him when he cried!"

Four is being into capes and towels with hoods.

Four is having a great time hanging with Daddy. 

We love you so much, Benny.

Love,

Mommy

Friday, October 11, 2019

The Disability Blogger Weekend Link-up awaits you


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: Children with no filters and the parents who love them

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, October 10, 2019

Holidays never go like you think they will, right?


Yesterday was a day of fasting, followed by a feast-o-rama with family. Over the years, Max has gotten pretty chill about holiday celebrations; the noise and hustle and bustle don't get to him like they used to. Still, I never know how things will go and last night was no different.

For one, Max decided he wasn't eating anything although he drank a big glass of milk, his go-to evening cocktail. But he sat at the table with all the adults and made conversation. This was a first, a sure sign of maturity. For many years, he'd sit by himself in the living room and watch TV.

Mostly, Max talked about his desire to move to Los Angeles, California. As he sat there in his Los Angeles, California baseball cap, which he wears everywhere except the shower. We are still working on the reciprocal conversation thing. Max is super social but tends to talk only about his own interests. I'd say this is not atypical of many teens.

And then, Max played "I Love L.A." on Alexa about 10 times in a row as he danced around. Meanwhile, Sabrina and my nieces decided it would be fun to dress up Ben as a girl. Turns out that Ben can be a really cute girl.

Then Max and Dave went out for pizza and did their usual Home Depot run, where Max is a regular and the guy at Dunkin' Donuts knows them by name. Max zoomed a cart around and eyeballed appliances for his fantasy home in L.A.

Not the evening I planned. As we well know, though, often things don't go like you planned—but they can still turn out pretty awesome.

Here—now it can be in your head, too!

Wednesday, October 9, 2019

A braille deck of UNO cards, words to live by from a Paralympian and other good stuff


UNO and National Federation of the Blind  have teamed up to create the game in braille; it's sold at Target.


Riley Saban, an Australian teen with cerebral palsy, and his dad have designed a device to enable him to participate in sports. It's a back brace that attaches to a vest to support the spine, core and neck, and it's let Riley sit upright on a paddleboard, swim and drive a go-kart with friends. The prototype is in development, and the father-son duo hope their startup, Polyspine, goes global. Me, too.

Google's trying to make smartphones easier to use for people with intellectual disability, reports DisabilityScoop. A function that relies on Google Assistant called Action Blocks, currently in testing, lets users do stuff on their phone with a single icon—book a ride from Uber, control lights, watch a TV show—instead of dealing with a series of steps.


And man paralyzed from the shoulders down after falling off a balcony has been able to walk using a brain-controlled robotic suit, reports CNN. Electrodes implanted his head gathered brain signals and transmitted them to a decoding algorithm, which would then translate them into movement and command a robotic exoskeleton to move. Over the course of two years, as part of a study, this man trained the algorithm to perceive his thoughts by having an avatar in a video game touch 2D and 3D objects. It sounds like it's straight out of a sci-fi movie but it's real life, and yet more proof that technology will transform our children's lives.

And last, words to live by from Paralympian Tatyana McFadden: