Wednesday, July 31, 2019

A pizza place staffed by people with disabilities takes off after dealing with hate

Pizzability in Denver, CO has delicious pizza and equally outstanding employees. Run by former special education teacher Tiffany Fixter, the restaurant is staffed by people with disabilities. Yet not everyone finds it appealing, as local TV reporter Tori Mason discovered after an interview with the owner. As she shared on social media:

"Pizzability is a restaurant that hires workers with special needs. The owner tells me people stand outside and say they're afraid to come in. People walk past and say 'that's where the retards work.' The employees can hear them. Please give them your business and your tolerance."

Mind-boggling awful, right? A lot of people agreed. The post has been shared more than 6000 times and people have been flocked to the restaurant, which has been open since December. "There are days where we sell two slices of pizza," Fixter said. "We've never been so busy. I'm exhausted, but it's great."

Previously, Fixter started Brewability Lab in Denver, a brewery that employs and trains adults with intellectual disability for job opps in the beer business. "I realized there's an employment crisis for adults with developmental disabilities," she told Diverseability Magazine. "I wanted to try to solve that."

Over at Pizzability, there's a visual menu that's available in braille. There's also a sensory corner with noise-cancelling headphones, adaptive utensils, cups and plates and a quiet room in the back for employees who need it. There's a reason the restaurant was honored as one of 50 Game Changers by the Special Olympics.

Pizzability is located at 250 Steele Street #108 in Denver. Stop by if you're in the hood! I especially liked the reporter's subsequent suggestion: "Take all your blind/Tinder dates here. If they say anything remotely rude, go to the bathroom and never come back. (Just make sure you eat your pizza first)."

Pizza wins. Inclusion wins. Love wins. 

Tuesday, July 30, 2019

Don't get in his way

This video of Max making a mad dash for home base was sent to me yesterday by his camp program director. There was so much to love:

• Max, showing his usual determination to reach a goal
• Man, he just keeps getting faster!
• He stayed right on course.
• All that cheering and the love he got when he arrived at home base

I kept watching it again and again, especially since I needed some cheering up. A new sitter of ours had basically told us yesterday that she had concerns about fully taking care of Max, who is away at camp for another couple of weeks. It shook me to my core. She'd seemed to be perfectly cool with helping Max when we hired her...or we wouldn't have hired her. She's been great with Ben so far; we'll see how it goes when Max is back.

I was reminded, yet again, that not everyone is comfortable around people with disabilities. And I was reminded as I watched the video just how much Max is like other boys age. For sure, he needs a helping hand in ways that many of his peers don't. And yet there he was, on screen, running with fierceness and savoring a win and being his amazing self and living and living his best life. And that's when I decided: It will be her loss if she doesn't get to know him.


Monday, July 29, 2019

When's the last time you felt like your own person?

"All I want to do is sleep, eat and read," I told my friend Wendy. We were talking about a getaway this weekend that we'd planned with our other bestie, Hedy.

"Oh, I know—sometimes you just want to feel like a person," she said.

Yes, that was it exactly. I wanted to feel like my own person. Not someone's mother (love you, kids!), not someone's wife (love you, Dave!), not someone's daughter (love you, Mom!) or sister (love you, Judy!), not someone's employee (love you, job)! As much as I'd looked forward to getting a massage and visiting a winery or two, what I most craved was doing exactly what I wanted to do, exactly as I pleased. This is what I lack in my ordinary life; my me-time starts somewhere around 10:00 p.m. or so on any given night after the kids are in bed and my house is in somewhat respectable order. (Somewhat.)

But this Saturday and Sunday, as I relaxed, I kept thinking that life was too short for me to only feel like my own person when I've escaped. I wondered: What makes me feel this way in real life and how can I get more of it? What I realized:

Waking up early in the morning before everyone else in my family is prime me-time, assuming I haven't been up till 1:00 a.m. the night before on a Netflix bender. Sipping iced coffee in the calm of my kitchen with the early morning light pouring in—before I have to serve breakfast or beg someone to wake up for school or scramble to get dressed for work—helps me feel centered for the rest of the day. So I need to do that more often, which starts with going to sleep early more often, which means the house may look not so close to respectable order more often. And I have to be OK with that, because it will pay off in me points.

Family activities that involve my interests and not Disney characters on ice or fire stations or shopping for overpriced leggings at the mall also make me feel like my own person, though they're rare. And so, I need to plan more trips to photo exhibits, museums and fancypants gardens, and maybe there will be some whining but maybe the kids will actually (gasp!) enjoy themselves and won't that be a great way to expand their interests and also I can bring headphones.

Also! Browsing in the library makes me feel like my own person, although I rarely make time for it.  This is an activity—such a basic, simple, no-plans-required activity—that's my equivalent of comfort food. I grew up reading ten books a week as a kid (the maximum number you could take out), and in high school worked in a library. I love books: checking out new ones, flipping through them, and just being around them. My book club disbanded years ago; it's time to find a new one.

Also! Taking the occasional walk during lunchtime at the office instead of sitting at my desk, downing salad bar and working makes me feel like my own person. It's totally do-able, if I make a conscientious effort to break out of this decades-old routine.

Also! Making more plans to see friends during weeknights. And carving out time to work out. Dave is a lot better at both of these than I am. My turn!

This all sounds so good right now and I feel so resolute but soon enough the school year will start with its avalanche of to-dos and me and my person-ness will once again be buried alive. So this week, I am going to be setting reminders on my calendar labeled BYOP (Be Your Own Person) and booking activities for the next couple of months and even setting actual alarms. So there will be no avoiding it: I will be my own person. 

BYOP, people.

Friday, July 26, 2019

The Disability Blogger Weekend Link-up is HOT

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: It shouldn't take tragedy to count your blessings, but sometimes it does

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, July 24, 2019

Yes, companies, you have to pay workers with disabilities

It's one of those stories that defies belief: In June, a Goodwill in Springfield, Illinois informed a dozen workers with disabilities in a job skills program that they would no longer get paid for their work because of a forthcoming minimum wage increase in the state. After major backsplash on social media, Land of Lincoln Goodwill Industries reconsidered, reports Disability Scoop, and issued an apology.

"Our recent decision regarding the (Vocational) Rehab program and the resulting harm it might have caused falls short of living up to our mission and we apologize for this error in judgment," said the statement issued by president/CEO Sharon Durbin. "We are reversing the decision to realign our Voc Rehab program and those participants affected will return to their part time skills training program with pay." Durbin has since resigned.

Like many, I felt completely outraged. How could any company possibly think that it's OK to not pay their workers? Besides the obvious fact that they deserved to be paid for their work, I thought about what kind of awful message this would send to them. I also felt sad, as I do anytime I see that prejudice beast rear its ugly head—and indeed, this is prejudice, of the form that implies people with disabilities are lesser human beings who do not have the equal rights that others do. Per the latest data from the Bureau of Labor Statistics, the employment rate for persons with a disability is 19.1 percent, vs. 65.9 percent for those without disabilities.

Months ago, I was at a pizza store with Ben when I spotted a young man with disabilities cleaning up. His aide sat at a table. I asked about how long the young man had been working there; about a year, he said. I asked if he was getting paid. The answer shocked me: "No." The aide couldn't explain why.

Sometimes, I have optimism about job possibilities for Max, as happened a few years ago when I found out a local CVS had a program for high school students with disabilities. I recently had a talk with administrators at Max's school about instituting computer skills in their life skills program. Max already does data input program in his OT session, but that and other computer know-how should be a core part of any life skills program these days—tech is the future.

Sometimes, though, I despair about the obstacles Max will face out there—the dated attitudes toward people with disabilities, the thinking that they lack abilities, the unwillingness to give someone a chance.

But deciding that your workers with disabilities can go without pay? No. Just, no.

Tuesday, July 23, 2019

The news from camp

So, Max and his A1 steak sauce are happily settled in camp (if you missed  it, this is what's up with that). As far as I can tell, he hasn't been demanding steak for dinner. A postcard arrived yesterday, in which Max noted:

I love my time here
I want to go home to Los Angeles, California
We are going to home in Los Angeles, California
You get air plane tickets, please

In between telling everyone at camp of his destination dreams, he seems to be having a blast because he is grinning his head off in nearly every single photo.

I mean, have you ever seen a happier dance?

Can you guess what followed the words "I want to...."?

I've noticed a few other amazing things from the photos, stuff only I would spot. Max looks to be focused in sit-down activities, which hasn't always been the case. Oh, and this one time he was standing on stage he was arm in arm with his fellow campers—as in, his arms were holding their backs, and he looked totally natural standing there. For Max, situating his arms with his palms facing upward (aka supination) does not at all come naturally to him. But for him to do that and place his arms at all behind his body is a pretty amazing feat of gross motor skills for him.

Oh, and also? This is his third year at this camp, and his very first without his plastic red fire chief hat. 

Monday, July 22, 2019

It shouldn't take tragedy to make you count your blessings, but sometimes it does

The other weekend, we were driving home from Visiting Day at Sabrina's camp when I saw the post in my neighborhood group and I burst into tears. A nice guy, a father of two, had died unexpectedly. I thought about him all last week, trying to wrap my head around it. How could he be gone? Wasn't he just serving cotton candy with me at the block party? This weekend, I learned about the death of the husband of an online friend, who died in a freak beach accident. Another young dad, Lee Dingle, a father of six; one of the children has cerebral palsy and he and his wife, Shannon, had become advocates for special needs adoption (The family's GoFundMe is here.)

When tragedy strikes people in your circle,  no matter how close you are to them it tears at your heart, stumps your soul (why did such a good person die?) and slaps you upside your head: There but for the grace of God go you and the people you love. Why do you bicker with them and pester them and gripe about them when they are still here?  

And then you feel horrible that it takes a tragedy to make you realize how lucky you are. It's human nature, but still. And you feel doubly horrible that you are acknowledging your blessings at a time when another family is going through hell. Because this isn't about you, it is about them. And then you wonder what could make you count your blessings on a regular basis, one that isn't contingent upon hearing about tragedies. And then you go through that whole cycle again.

Suddenly it feels wrong to bug your husband about his dubious driving, because he is still sitting right there, beside you. And you stare at him and you think of what these other people are going through and you feel pained for them. And then, once again you are wondering why you take the loves of your life for granted, although you have flashes of gratitude for trivial stuff like, say, finding time for a pedicure. Which makes no sense at all.

The greatest gifts you have in the whole wide world—the people that you love—are the ones you often fail to acknowledge as gifts. 

You do whatever you can do for the families—pay a condolence call, donate to a fundraiser, bring over a meal, send a message. And you dole out more kisses and hugs than usual to your family and you're particularly aware of the warmth of their bodies next to yours. And you know: you are lucky to have the love that you've got for as long as you can have it. And maybe other people are better at recognizing this more regularly than you are, and it's something we all need to be more aware of. Because you just don't know.  

Image: Flickr

Friday, July 19, 2019

The Disability Blogger Weekend Link-up: Your cool spot during the heat wave

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: Target's offering costumes for kids in wheelchairs: yeah!

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, July 18, 2019

Cerebral palsy, Stranger Things and not-so-strange things

Max's legs worry me. He's gotten a little taller in the past year, and his legs seem pretty stick-like. Once shorts season started, this became more apparent than ever. I wondered if his cerebral palsy was the cause. Then Dave and I were watching Stranger Things the other night and I got some unexpected reassurance.

If Max has taught me anything, it's that abilities come in all shapes and sizes. His legs may be thin yet boy, do they work: His walk is pretty damn amazing. While he's tripped once in a while at school on his classroom chair, when he's at home, ambling around the neighborhood or otherwise out and about he is steady on his feet. The surgery he had two summers ago to loosen the muscles and tendons on his left foot really helped. I see his right foot turning in a bit now and there's a good chance it will also require surgery but for now, it's OK.

I've read that for people with cerebral palsy on one side of their body, the arm and leg on the affected side can be thinner and shorter. However, Max has four-quad spastic CP, which means it affects all his limbs, so I'm not sure the CP is to blame for this—his arms don't seem overly skinny. His natural body shape plays into this, as his legs have always been on the slimmer side. Now that he's on the go a lot more, he's burning extra calories. He already does this to excess since his muscles, which are on the tight side, work extra hard with movements. We do our best to keep Max well fed, especially with steak and ice-cream. He downs Boost, a nutritional supplement. But those skinny legs, well, they are hard for this worrywart mom to handle.

You never know where you will find inspiration, and this time it came from Stranger Things. I have some mixed feelings about this season—the Russian twist isn't very plausible. You know, unlike The Demogorgon, who in Episode 5 infiltrates a hospital. The gang was, naturally, in the waiting room. As Will got up from his chair, sensing the monster's presence, all I could do was stare at his legs. His stick-like legs peeking out of those '80s track shorts. Will has Max's legs! Max has Will's legs! It's not just a cerebral palsy thing! After that, I started noticing boys with skinny legs when I was walking around town (er, I hope nobody thinks I'm a perv).

I'll still be querying the pediatrician and the orthopedist at upcoming annual appointments about Max's legs. As if I'm going to stop worrying. But for now—to paraphrase that old ZZ Top song—Max has got legs, and he knows how to use them.

UPDATE: An online friend shared this research review with me that determined smaller muscles and muscle atrophy are a thing in people with CP.

Wednesday, July 17, 2019

There's no stopping Marshmallow Daddy

Did you think your husband was going to be a great dad early on in your relationship? I did. Dave is exceptionally warm, caring and fun. I had no idea just how nurturing, supportive and all-around amazing he'd be with Max. The two of them are best friends. Partners in crime, some might say. Dave will do anything to make Max or any of our kids happy—joy trips, rip-off smoothies, TV marathons. He has rightfully earned his nickname, Marshmallow Daddy. Me, I'm the tougher, limit-setting one otherwise known as Mean Mommy.

So it was no surprise the other day that Dave was torturing himself about plans with Max. A friend of his was in town and Dave had kinda sorta said he'd meet up with him. But Max had it in his head that the two of them were going to stay the night at Holiday Inn. Max was in between camp stints, and he likes to keep that vacation feeling going with a Holiday Inn getaway the night before he leaves for camp. We had set a bad precedent and by "we" I mean Dave; they've done this two times before. 

I was all, "No, Dave, go visit your friend."

Dave: "What am I going to say? Can you tell him?"

Me: "You are going to say, repeat after me, 'Not this time, Max.'"

Dave: "I can say I have to work!" 

Me: "Max has to learn that life does not revolve around him and that you have a life! Tell him you are going to see a friend!"

But then. Marshmallow Daddy. What went down:

"Hey, Max, want to come with me to New York City to see Brian?"

Max: [Does a major happy dance.]

So Dave and Max headed to New York, where they had dinner with Brian and his family. And then they crashed at my sister's house. Not quite Holiday Inn—I mean, few things are—but fun. And once again, Dave had done everything in his powers to make Max happy. And once again, I wondered about spoiling him. And once again, I felt grateful that Max has Dave, and Dave has Max. 

Tuesday, July 16, 2019

Target's offering costumes for kids who use wheelchairs: yeah!

Target just released a sneak peek of its 2019 Halloween collection, and while I'm choosing to pretend summer lasts forever, I was seriously excited to see adaptive costumes for kids in wheelchairs, along with costumes for kids who have sensory issues or G-tubes. As is always the case when a chain store debuts adaptive gear I think, YEAH! followed by IT'S ABOUT TIME! but mostly YEAH!!!

The Girls Adaptive Princess Carriage Wheelchair Cover ($45) attaches with hook-and-loop closures and, the description notes, can be cut to fit a variety of wheelchair sizes. Princesses can get decked out in the Adaptive Princess Costume (sizes 4 to 14, $20) without any evil clothing spells—there's an opening in the back and a wheelchair friendly design. 

The Boys Adaptive Pirate Costume (sizes 4 to 14, $25) has openings in the back and wide leg openings, so it can be slipped on over shoes. The Adaptive Pirate Ship Halloween Costume Wheelchair Cover ($45), like the carriage, attaches to wheelchairs with simple closures and can be cut to fit a variety of wheelchairs.

The Plush Adaptive Unicorn (sizes 4 to 14, $30) is sensory friendly, with flat seams and no tags. The hood, wing and tails can each be removed, for comfort. It has a hidden opening in the stomach area, for kids with G-tubes. 

The Toddler Adaptive Plus Shark ($25) also has flat seams, no tags, and an opening in front for abdomen access. 

Yep, costumes and wheelchair covers are sold separately. You can pre-order now. While it's been exciting to see all the amazing costumes being made for kids in wheelchairs in recent years (the nonprofit Magic Wheelchair is dedicated to that), it's great to have ones to buy. That's what I tend to do, except for that one time I made Max a rolling car wash during his car wash phase. 

Target's doing a nice job of growing its offerings for kids with special needs. Two years ago, it debuted sensory-friendly clothing. The store also regularly features children with disabilities in their ads. This past spring, it came out with a collection of sensory-friendly gear. While of course mass stores should be offering clothes and gear for people of all abilities, this is hardly the case.  

So props, Target. We're all excited. Now excuse us while we return to summer. 

Monday, July 15, 2019

Dear camp, this is why my boy is bringing steak sauce

Dear camp staff,

When you unpack our son's duffel bag this week after my husband drops him off, you might be surprised to find a bottle of steak sauce. Here's the deal.

When Max decides that he's into something, he gets really, really into it. So after a trip to Disneyland in February, he decided that he was moving to California. You will hear him repeating this often during his stay—he likes to say "California is my home!" about every 10 to 15 minutes. I choose not to tell him that's wrong, or humor him to the extreme. Instead I say things like, "I can totally understand wanting to move to California!" He will tell you that the state he lives in is "disgusting" because it gets cold and it snows. Agree or not, your choice. Yes, last year he was focused on moving to Orlando, but that was so 2018. He is all about L.A.

Oh, and steak. We're not sure how or when it started, but Max now has a thing for steak. We do not expect anyone at camp to serve him steak. But when he decided that he was packing some A1 sauce, we figured, why not? It might come in handy for a bbq'd burger. Or he might just like to keep it propped on his nightstand so he can gaze at it adoringly. At home, he insists that we display our growing collection of steak sauces on the Lazy Susan on the kitchen counter. It's a good thing that he only chose to bring one little old bottle of steak sauce to camp.

We are grateful that you are cool with letting Max be Max, including the fact that for the last couple of years he's worn a red plastic firefighter hat  emblazoned with the name "Fireman Max!" in red marker. This year, the hat's not coming, just the steak sauce, but he still likes to be called Fireman Max. 

I'm pretty sure Max is not going to insist on steak for dinner. However, he might ask to wear the Los Angeles t-shirt his dad got him off Etsy every single day. Dave meant to buy a couple more before camp started but forgot. You might have to put your foot down the third day in a row of him wearing it. Although heck, it is camp.

It will bring Max great joy if you talk about his love of steak and his desire to move to California. Even better if you talk about eating steak in California, although he is also planning to eat a lot of mac 'n cheese there. He does not have any specific plans about what he is going to do in California, other than visit Disneyland, but no matter. The weather will be warm and will all be good.

So thank you for taking good care of our boy, once again. Let us know if he needs more steak sauce.


Friday, July 12, 2019

The Disability Blogger Weekend Link-up is live

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: Why you should send your child with disabilities to camp: inspiration and ideas

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, July 10, 2019

A band partners with the Special Olympics athletes to make great music

Summer always brings some memorable songs, and here's one making its debut in video: Run Free. The band Hello Noon partnered with several musically-inclined Los Angeles Special Olympics athletes to create it.

The project started when singer/guitarist Stephen Spies taught a music class for students in Special Ed at an elementary school in Los Angeles. He'd been told that not all of them would participate but, he says, "Everyone in the room was drumming along and fully engaged." Hello Noon's pianist, Kate Bacich, and violist Rebecca Bacich had similar experiences. They all started thinking about a project that would showcase neurodiversity. 

First up, they reached out to Special Olympics swimmer Caley Versfelt, who's from their hometown, about filming a video together. She was in. Athletes Cole Sibus and Jared Cozak, who play in a stomp band together, were also onboard. And boom! In the video, set on top of a mountain in Malibu, Cole rocks the electric guitar, Jared drums and Caley jumps onto the mandolin and viola.

"I think that  when people  have Down syndrome, autism and others with disabilities, we often focus on what they lack instead of focusing on what they're capable of," says Stephen. "We wanted to showcase their talent, intelligence and warmth."

"I had so much fun playing with the band, I loved playing the drums," says Jared. Adds Caley, "We had a funtastic time making new friends and a great music video. Hello Noon welcomes acceptance and inclusion. Their kindness is helping us change the world." 

Tuesday, July 9, 2019

The helpful new product for kids and adults with disabilities, created by a mom

This guest post is by Tamra Logan, mom to a daughter with disabilities and the creator of Skneeksflexible, tear-resistant knee pads (aka sneakers for your knees) for children and adults with disabilities. Here she shares how she made it happen.

My middle child, Birkley, has been through a lot in her life. She has profound hearing loss and cerebral palsy. Yet at 11 years old, she is a spunky girl who always wants to do what everyone else is doing. That's why as a parent, I've found ways to give her the best experiences possible—and when I couldn't find it, I created it.

After Birkley was born, she failed her hearing screening and after more tests, they confirmed she was deaf at around 2 months. Months later, she wasn’t hitting her milestones or sitting up, so we started seeing more specialists. No one had answers. As a last resort, through family connections, we saw a well known neurologist in the Netherlands. When Birkley was 18 months old, we found out through a letter we received that she'd contracted the CMV virus during pregnancy. The letter said she looked stable. It was such a relief to finally know what was going on.

Over the years, Birkley has had cochlear implant surgeries as well as multiple botox treatments to treat her hypotonia and muscle tone issues. She’s also had hip surgery due to hip dysplasia. Still, she is unstoppable. She has the best giggle. She is very aware, and figures out way to do things.

I've always been crafty, and so I made her cochlear implant headbands so she could hear but keep the weight of the implant off her ear . I created an on-the-go playmat so I could bring it with me wherever I went, since she was on her back for the first 3 years of her life if not assisted. I also sketched and made a prototype of a walker, which a neighbor built out of wood, leather and wheel castors. It gave her the ability to cruise around on her feet.

When Birkley turned 4, she was finally able to be mobile on her own by using her knees—she did sort of a scoot/crawl. She would lean forward, put her hands down, pull in her knees and repeat to move. Later she would literally walk using her knees or knee walk. Then she started to run on her knees.

It was so exciting to see her progressing but now I needed something to protect her knees. I wanted her to be able to do and get everywhere but there were no knee pads out there that would work on cement, asphalt, stairs at the park or just on hard surfaces.

I started out using baby leg warmers and glued denim to the knee. I then added silicon to the rim and inside of the knee pads so they wouldn’t slip down her leg. I would put them on her legs before putting on her AFO’s and shoes. But they wore out fast. My husband brought up biking arm sleeve warmers. These had the silicon I needed so it wouldn’t slip down her leg. I glued on padding and denim. Knowing the denim wouldn’t last forever, my husband brought up the idea of using Shoo Goo, an adhesive he'd used to repair tennis shoes. I added it to the knee pad to create a coating, making them more durable.

Once I started making these for Birkley, I'd run into parents at the park who'd see the knee pads on her and tell me that their kids needed them. They weren't a quick product to put together, and I began looking into ways to produce more. I tested out different fabrics and materials for the knee, researching the best silicon elastic grip and more. It took a lot of time, especially with three kids and one with special needs, but I knew that if we had a tough time finding this particular product, others were as well.

My daughter finally had her independence—Birkley could move on her own for the first time, without our assistance or a walker—and I felt it was important to share and be able to sell this product to others and possibly help them too. As a family, we could enjoy the park, a neighborhood cul-de-sac party, the water park and just hang without worrying about Birkley getting bloody knees or falling and hurting herself.

I officially started Skneeks (pronounced "sneaks") after six years of making homemade knee pads for Birkley. And I know they have made a difference. A parent who recently purchased them for her 4-year-old daughter with motor delays wrote, "OK she loves them and wanted to wear all afternoon and night!  Thank you so much! Allie loved being independently mobile at the pool. And I love not worrying about her knees getting torn up. This is seriously going to be a game changer for the summer!"

As of now we are still small and work with a small manufacturer here in Denver, Colorado. We're working on funding to create more Skneeks and other adaptive products under my adaptive brand, GoLiiv. We are working or talking with larger manufacturers as well. This our first product but more inventive, inclusive/adaptive products for people for recreation are on the way. Kids and adults deserve it all, and inclusion is everything!

Birkley started walking last year, just before Halloween. Now that she is walking, life has definitely been more exciting but she still wears her Skneeks because she’s not fully stable and falls on her knees when she gets tired. She is also still on her knees a lot. There could be more surgeries and hurdles to overcome, but we just keep moving forward.

You can follow Tamra and Birkley on Facebook here.

Technology and disability: another win

Max's Apple Watch has been game-changing since the day he got it, when he immediately figured out how to call me and Dave. He progressed to texting, which he is also pretty adept at. The watch could understand simple voice requests such as "Hi!" If Max typed the first couple of letters or word of a phrase (like "on")  the watch would fill in the rest ("my way"). 

But Max's next tech breakthrough has seriously blown me away. He is now spelling words by tracing letters on the watch's pad. This is a major feat of fine-motor skills, not to mention, spelling. Max is regularly able to tell us stuff that he can't with preloaded phrases, such as "I want to eat steak" and "I want to go to baseball game please" regarding a field trip at school and "It's cold here and it snows" regarding his making a case for moving to Los Angeles.

Technology has long been motivating to Max. I knew it back when the speech therapist at his first school said that Max wasn't yet ready for an augmentative communication device, and I basically told her she was 110 percent wrong and had our district test him (he got one almost immediately, we ended up switching schools). The Dynavox and then the iPad opened up a communication world for him where he could finally express thoughts in his brain that his mouth couldn't. And now, communication is even more accessible because a gadget is right there on his hand. I hope that the Apple Watch and iPad are someday able to perceive speech patterns of all kinds (Talkitt is currently testing voice-recognition technology). 

You can see Max in action in this video, where he is once again telling me that he doesn't enjoy living where we do. He lets out a little giggle at the end because he takes great satisfaction in telling me that—and in being able to literally speak his mind, just like anyone.

Monday, July 8, 2019

Those moments when you can't believe how far your child has come and wow, are you grateful

Over the weekend, we took Ben to the Crayola Experience in Easton, PA. It's been a long time since we were there, and the place has been completely redone. Now kids can do things like make custom wrappers for crayons, create spin art out of melted crayons and play all sorts of colorific video games.

Although the place looked totally different from when we were there with Max and Sabrina (who are in cam), the memories came flooding back. Max wailing because it was crowded. Max not wanting to do any coloring because holding crayons was hard. As we stood in front of a vending machine to purchase a few packets of Model Magic, I thought back to how we used to use this stuff to wrap around crayons and spoon handles to make them easier for Max to hold.

The flashbacks happen whenever our family visits places we took Max to when he was little, everywhere from amusement parks to our town's movie theater where Max saw his first movie. Suddenly, I am acutely aware of just how much progress Max has made. Ditto for school performances, which used to be a certain form of torture but now Max hams it up.

Max's first time at the movies (Monsters University)

Ben's first time at the movies, this weekend (Toy Story 4)

I never take Max's progress for granted. But the days go by and the weeks go by and, well, I just don't pause to consider because Max is Max and he is who he is. But: Y-E-S. THE PROGRESS.

These days, we can't keep Max at home—he wants to explore new places, attend events, try new restaurants, you name it. He still not into coloring, but he likes painting signs and his writing has seriously improved. We no longer use Model Magic. He does best when writing or coloring utensils are encased in foam tubing (for more info, here's a post about helping kids with disabilities write and draw), but he can hold a paintbrush pretty well. I mean, check out this camp masterpiece.

People who haven't seen Max in a while are often wowed by how big he is (sixteen!) and how far he has come. Those are yet other times when I realize the leaps and bounds Max has made. But nothing is more potent than being in the same places that used to cause Max, along with me and Dave, much distress. 

We took Ben to our town's Fourth of July fireworks last week. He made it onto the field, which was farther than we'd ever gotten with Max. As soon as the first one exploded in the air, Ben jumped into my arms. Then he put his fingers in his ears. Five minutes later, he asked to leave. His fingers stayed in his ears the entire walk home, and he was so shook up he asked to sleep in our bed. 

Someday, maybe we'll take Ben to that field and he'll love the fireworks and I'll think back to little Ben and how afraid he was and much progress he's made. Or maybe he'll never be into fireworks, and that'll be cool, too. As Max has taught me, children don't always enjoy themselves in the way that you hope or expect—but there are plenty of ways to live and love life. You just have to realize it. 

Friday, July 5, 2019

The Disability Blogger Weekend Link-up: Come on by

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: Why you should send your child with disabilities to camp: inspiration and ideas

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, July 3, 2019

Yep, progress, just not the kind I had in mind

Max walked into the house the other day after a breakfast outing with Dave, and I took off the damp bandana bib he had on. He wears it to catch excess saliva; the operation we got two summers ago was a fail. Because of his cerebral palsy, Max has oral-motor challenges that result in drool. He uses scopolamine patches; they're meant for sea sickness but since they have the side effect of drying up the mouth, doctors sometimes prescribe them for people with cerebal palsy. They help Max but don't totally do the job.

He wears wristbands to wipe his mouth, yet typically isn't aware that he is drooling. While I am grateful that it does not make him feel self-conscious, at the same time I seriously hope he will be aware of it someday as it can be off-putting to people, and may hold him back from job opps.

Dave doesn't love the bibs—he thinks they make Max look babyish, even though they are mostly plain navy blue fabric . We've had issues finding absorbent ones over the years and lucked out because recently, the mom of someone who works at a camp Max goes to sews, and she offered to make a bunch for him. Shout out to Susie, our bandana angel.

So I took off the bib. And Max shook his head and said, "On!" That was a first, as Max has never cared about wearing them. I got excited—maybe this was the start of drool awareness. Except later that day, Dave told me that when he and Max were having breakfast, Max got a little upset because some water spilled on the shirt he was wearing. It was his Los Angeles shirt, which Dave bought for him on Etsy because Max has decided he is for sure moving to California (it started after he and Dave were there in February). 

It turns out that Max tried to wear this shirt every single day at camp last week. His counselor kept texting me that she was doing her best to rinse it, but she finally persuaded him to put on other tees. We just bought two more.

So, Max didn't want to mess up his L.A. shirt. Which explains why he was into the bandana bib. So while he didn't want to wear it for the reasons I'd hoped, he's showing concern for taking care of something he loves, and that's progress. I'll take it!

Monday, July 1, 2019

Why you should send your child with disabilities to camp: inspiration and ideas

"Max is the heart of the camp. He hugs and encourages everyone." That was a text I got from Max's camp counselor that made me beam. This was his seventh summer at Camp Moore, which has week-long sessions—he's been going since he was 7. I still remember how tearful he was when we first dropped him off. I emailed the director repeatedly, starting in the car on the way home. The next day, he called and said Max had danced the night away at a party. He sent me a photo of Max with a gigantic grin on his face. He's loved camp ever since, and it's been awesome for him and Dave and me, too.

For a while, Max would do that one week of camp then continue with the Extended School Year program. I looked around at some other local camps. One day camp wouldn't take us because Max wasn't yet toilet trained. A sleepaway camp wasn't able to give Max the personal care support he needed. But then, we found programs at Jewish camps that welcomed Max. Ironically, while our experience had been that temples weren't typically inclusive of kids with disabilities, the faith-based camps were. Max now attends camp for the better part of summer.

Dave and I decided that camp would be good for Max in many ways. We also figured you are only a kid/teen once, and he deserved to enjoy the same summer fun that other children experience. Max is not a kid who regresses with education or skills, which was also a consideration; it's not an option for every one.

Camp has done amazing things for Max. He's more independent at camp. He can be social 24/7 (although happily he does sleep at night). He tries new things—archery, hockey, bowling with a giant ball. He sharpens his skills; he's become quite the air hockey and basketball pro thanks to camp. He makes arts and crafts. He eats s'mores galore. He sings at performances. He experiences connections with peers, disabled or not, that he doesn't enjoy the rest of the year. He has the time of his life. Because: camp.

Camp has done amazing things for me and Dave, too. We can rest assured that Max is in good hands, and we can rest, period. Sabrina is also away at camp, and having just one child at home is almost a staycation. Most of all, I appreciate the breaks from the doctor appointments, the therapies and the routines. I'm still working, on the job and at home, but I feel carefree. Well, almost.

Here's a list of camps for children and teens with disabilities 

I speak with a lot of parents who are worried and doubtful about sending their kids to camp. Will their child be OK without them? Could they possible trust anyone else to make sure their child gets their meds and proper medical attention, eats well and generally receives the help they need? This was me before Max went to camp.

Reality check: Camps that offer programs for kids and teens with disabilities and medical needs know what they are doing. If they can't accommodate your child, they won't accept him (and as frustrating and hurtful as that may feel at the time, it's the truth). The camps Max attends have experienced medical pros on hands. They do a full debriefing on his needs, and are reachable at any time. The counselors send photos, and some camps have private websites where pics are posted. To be sure, not every counselor is outstanding; last year, a friend was upset when her child came home from a camp unkempt and not so clean. But we've had great experiences. (Thanks, Regina!)

Some camps are free; the camp Max is at is generously sponsored by The Elks. Your state's division of developmental disabilities may pay part of the bill. Sometimes, you can find other funding assistance—for example, the California Autism Resource & Evaluation Foundation has a Family Funds grant that pays for autism summer camp. And One Happy Camper offers $1000 off a child's first summer at Jewish camp. Google "grants for camps for kids with disabilities" and "grants for camps for kids with special needs," for starters. You also never know what resources might exist in your own life; a few years ago, unsolicited, our temple offered a small stipend for camp.

If you're considering sending a child with disabilities to camp, whether for a week or most of the summer, visit a few this summer so you can see them in action. I've usually gone on my own, without Max, to speak with the camp director and get tours of the camp. Think about it! Your child will be a happy camper. And, yes, once you get past the OMG-my-child-is-away-from-me-stage: You'll be a happy camper

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