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." High 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

Friday, June 28, 2019

The Disability Blogger Weekend Link-up: click on over

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: Sunscreen and kids with sensory issues: exactly how to apply it

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, June 27, 2019

A little story about inclusion and children and teens with disabilities

A boy who lives down the street from us was playing basketball the other day; his family has a portable basketball hoop they keep by the curb. Max and I were taking a walk and when we passed by, he asked to play. Teilo handed him the basketball.

Max held the ball and looked up at the hoop, which was high. "Could you lower it?" I asked. Without hesitation, Teilo walked to the back of the stand, pulled a lever and lowered the hoop. Then Max took a bunch of shots. Sometimes, he'd just toss the ball up in the air it would start bouncing away and Teilo would grab it and hand it back to Max. Other times, Max would angle himself so the ball flew toward the hoop, and he got a couple of baskets.

It was pretty awesome. Max was proud of himself, as was the mom who shot this video.  

When people hear the word "inclusion" they may think of major initiatives, like including kids with disabilities in classrooms, sports, events, activities and community programs. And yes, inclusion is all of that. But inclusion also means countless everyday little ways to include our children, ones that ideally happen in a no-big-deal way.

Inclusion means saying "hi" to a kid or teen with disabilities on the playground, chatting with them at an event or roping them into a neighborhood game. It's figuring out a way to do an arts and crafts project at a camp if a child can't do it the usual way. It's lowering the music at a family get-together if it's too loud for a child with sensory needs. It's asking a parent before the barbecue if there are any particular foods a child with disabilities eats. It's...well, I could go on and on and on but really, it's roping a child or teen into life itself.

Inclusion isn't just saying yes when an accommodation is requested—it's being proactive and considerate about including a child. I can still recall the painful times I had at children's birthday parties when Max wasn't yet walking. I'd sit with him on my lap, helping him play with a toy, as the other two-year-olds zoomed by. I'd make small talk with parents, but if only one of them had sat down next to us with their child and encouraged interaction, it would have meant the world.

I can also recall this one time when a mom organized a bike race on our block and included Max. For years, Max couldn't keep up with the kids who were running or biking around. Then he got his bike and suddenly, he was on the go. I don't remember exactly how that race went down, but I do remember watching this mother gather Max and a bunch of kids at a start line, and it meant the world.

And yes, she knew Max and yes, the boy playing basketball knew Max. But that shouldn't matter. Inclusion isn't just the nice or decent thing to do, it's the human thing to do. Inclusion should be as natural and normal as opening a door for someone.

People often mean well, I know. And yet, some may think a child with intellectual or physical disabilities isn't "able" to play because he can't do it in the typical way or that it might be too challenging. Or maybe they assume a child who is nonverbal isn't up to interactions. It's best to assume competence—or at the very least, assume there is a way.

Inclusion is both an action and a state of mind.

Inclusion is all the little-but-not-little things.

Inclusion is enabling our children to belong, every single day in every single way.

Wednesday, June 26, 2019

Sunscreen and kids with sensory needs: exactly how to apply it

Applying sunscreen to a child with sensory issues can be a challenge; ditto for getting them to wear a hat. So can outdoor life during the summer, for children who have challenges regulating their body temperature. I got some great pointers from Vikash S. Oza, MD, assistant professor of dermatology and pediatrics at the Ronald O Perelman Department of Dermatology at New York University School of Medicine and a spokesperson for the Society for Pediatric Dermatology
What advice do you have for applying sunscreen to a child with sensory processing issues?  
Applying and wearing sunscreen can pose a challenge to children with tactile sensory disorders. A couple of tips: 1) Make it fun – sing a silly song for sunscreen time. 2) Make it a game; pretend you’re going through the sunscreen car wash. 3) Try spray-based sunscreen: Spray on your hand then rub them in. 4) Use roll-on sunscreen for challenging areas like the central face and back of the neck. 5) Try distraction if all else fails—a tablet or phone may be a necessary evil.
If a child can't handle the feel of sunscreen on their skin, what about wearing clothing with UPF? (That's the clothing equivalent of SPF—it stands for Ultraviolet Protection Factor.)
Limiting the amount of skin that is exposed directly to the sun with sun protective clothing can limit battles over sunscreen. Make use of lightweight long sleeve clothing, rash guards and wide-brimmed hats.
A recent FDA study found that several active ingredients in sunscreen can seep into the bloodstream at levels that exceed the FDA's recommended threshold. These ingredients include avobenzone, oxybenzone, otocrylene and ecamsule. What are safe ingredients to look for? 
Both zinc and titanium have generally recognized as safe and effective sunscreen ingredients by the FDA.
Some children with disabilities can heat up more than other children when it's hot outside, as they have issues regulating their temperatures. Do you have any tips for helping to keep their bodies/skin cool when they are outdoors at the beach, at an amusement  park or anywhere where they might end up baking in the sun? 
As every parent knows, there is no one size fits all solution. Children with ASD and/or sensory processing disorders have diverse needs and often require creative and unique solutions. Keep to the shade for both sun protection and avoid overheating. Be prepared—a spray bottle with water and cooled towels can help.
What is a good way to help a child with intellectual disability understand why sunscreen is important—how can a parent explain it? 
To explain why we use sunscreen, keep it simple: "The sun can cause burns that help our skin." And then think: routine, routine, routine. Sun protection should be second nature to both yourself and your child when enjoying time outdoors. Many children with ASD crave routine so start using sun protective clothing and sunscreen early on in life and part of a daily routine. Hopefully, your child will equate this with a necessary step towards outdoor fun. Preparing your child can also be helpful so they are not surprised. For example, walk your child through the steps involved in going to the pool, with sun protection being one of those tasks.
Any last pointers to share?
Be a sunscreen role model—apply yours in front of your child. Habits are easier to adopt if everyone in the household does them!

Tuesday, June 25, 2019

The fear parents have about police and their disabled children

Max is a good-natured, cheerful kid who occasionally roars when he gets upset. Literally, he roars. While he doesn't do this at school, he does not hold back when he's with us. It doesn't matter whether we are seated in a restaurant or walking down the street—he'll roar. This can disturb the peace for all of us. Lately, though, I've been thinking about how dangerous this could Max. I got on the phone with his school psychologist this week to discuss it.

On June 14, a nonverbal man named Kenneth French who was shopping at a Costco in Southern California with his parents was shot and killed by an off-duty officer. His parents were also shot and critically injured. That's the family in the photo above. Their lawyer has said that Kenneth pushed the officer, without going into detail, and that his actions did not justify gunfire. It was possible that a change in Kenneth's medications had affected his behavior. A cousin of Kenneth's told The Press-Enterprise that he was "non-violent, non-aggressive and nonverbal" and "a gentle giant."

This murder was deeply disturbing, and personal. Although Max communicates with words, his speech can be hard to understand. He, too, is not violent or aggressive. But when he roars he sounds scary, even to me.

I sat up late at night, googling. I read an op-ed in the L.A. Times by Marie Myung-Ok Lee, the mother of a young man with intellectual disability, that listed a number of cases in which people with physical or intellectual disability have been shot by police. "My son does not understand the law. But more urgently, the law does not understand people like him," she wrote.

I thought back, once again, to Ethan Saylor, a man with Down syndrome from Maryland who died after an encounter with police. Six years later, Maryland is a leader among states that mandate police training for responding to people with intellectual and developmental disabilities, thanks in part to advocacy by Ethan's mom, Patti Saylor. At least 27 states have crisis intervention training that require officers to have training for responding to people with mental health issues or substance abuse issues. And yet, officers may not know how to handle a nonverbal man who may be acting violently...or seemingly violently.

I thought about how Max sounds when he is distressed, and how that could come across as hostile if you don't know him. I thought about how his face looks when he is scared, and how freaked out he would be if confronted by a police officer who was barking at him or holding up a gun. It was terrifying to ponder.

As is often the case, it all boils down to awareness and understanding. Earlier this year, I shared a story about a man with autism acting violently in a hospital who was soothed by safety officers there. Perhaps Kenneth's death will spur more police departments to offer training to officers on how to appropriately engage with people with intellectual disability. But why should it take the death of another person with disability to bring about change?

I spoke with the psychologist at Max's school yesterday. We agreed that Max's reaction is part frustration and part teen, and we'll be working on coping mechanisms. Suddenly, this seems more urgent than ever. I won't always be there to protect Max, I know that. What I don't know is whether Max could protect himself from an officer who just doesn't understand him.

R.I.P., Kenneth French.

Image: Facebook/Rick Shureih

Monday, June 24, 2019

Brothers just like any others

"Max, I'm going to help you down the stairs!" Ben says, and he dashes over.

Max is pretty good at getting downstairs on his own. He takes it slowly, holding onto the railing as best he can.

"Ben, Max is fine," I say. I'm a little worried that Ben will tug too hard and throw Max off balance.

"It's OK!" Max tells me. He gets that Ben wants to lend a hand, and he is game to indulge him. That's pretty mature.

This is one of the first times I've seen Ben offering to help Max. They get along really well but he's also competitive with him, and I can understand why: Max gets plenty of attention from me and Dave and Ben wants to make sure he's getting his fair share, if not more. He's not beyond giving Max a good shove now and then or yelling "Go away, Max!"

Max is pretty good natured, and takes it all in stride although at times he argues back or roars "NO!" The two of them get up before the rest of us and Ben will go downstairs to hang with Max in the living room; plenty of times, I'm awoken by a shouting match over the remote control.

"How do they get along?" people will ask, and I smile and say, "Oh, they have a totally typical relationship. Sometimes they are best friends and sometimes, they are at war."

Max is mainly an awesome big brother, as he has been since Ben was a tot. He'll admonish Ben when he's jumping off the couch or spraying water from the sink. A lot of times, he's just completely charmed by him, as happened this weekend when Ben took off his clothes and ran around our front lawn, naked, and Max kept crackup up. I'm not sure how the neighbors felt.

Every so often, Ben will be immersed in watching a video on a phone or playing with a toy truck, and Max will walk over and plant a kiss on Ben's head. Every single time, I melt even though Ben typically responds "EWWWWW!"

On the porch stairs that day, Ben ended up holding the tips of Max's fingers and the two of them inched down, one step at a time, just two brothers looking out for each other.

Friday, June 21, 2019

The Disability Blogger Weekend Link-up: come one, come all!

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's not hard having cerebral palsy, he told me

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, June 19, 2019

The working mom panic that never goes away

"Can you go in late to work on Thursday?" Dave asks. We are at a Broadway show, Tootsie, that is about to start. Weeks ago, our new sitter told us she had to come in late one day because of a medical appointment, and Dave had said he could handle it. I put it out of my head. Only now it turns out he's traveling and can't do it. And I can't go in late to work that day, because it is my last one before vacation and it is jam-packed with meetings and to-dos.

"WHAT?!" I say, and so begins that familiar freakout. Childcare panic is a real thing for working moms, whether you're dealing with a nanny who has to be out or a sick kid who can't go to daycare.

We've had nannies since Max was a baby—daycare was never an option for us, although the backup daycare at my job when he was young was wonderful with him. Max still needed to be spoon-fed and diapered at age 3 and a woman named Jenny there had no hesitations about it. High-five to Jenny, wherever you are: I'm forever grateful to you.

We still have backup daycare, through my current company. We can make an appointment, drop Ben off at a center, then pick him up early evening. There's one not too far away from our house, and then one near my job. The option has come in handy, and I know I'm lucky to have it. But on this upcoming day, I can't swing getting Max off to school in the morning, dropping Ben off at daycare and getting to my job in time for an important meeting.

My children are depending on me. People at the office are depending on me. Help. Me.

In the afternoon, someone has to be at the house when Max gets home from school. I am so proud of him for being able to walk out our door and get on the bus by himself, then get off the bus and walk up to our front door when he gets home. That's where the independence ends, though, as someone has to unlock the door, take off his braces, oversee homework, make him dinner and lend a hand with showering and pajamas.

I am a relatively unflappable mom, excluding medical situations involving the kids (especially seizures, the most panic-inducing thing of all)—and excluding childcare. Sixteen years into parenting, that moment of "OMGEEEEE WHO IS GOING TO BE WATCHING OUR KIDS?!" is very real. It's one of the Catch-22's of parenthood: There is nobody you love more than your children but when you're sitter-less, you start fantasizing about your kid-less life when your biggest worry was getting to work on time.

I'm not able to focus much on the show, as cute as it is. Dave comes up with a solution during intermission—he reaches to out an old sitter, who is available to be there in the morning. Childcare crisis averted...for the day.

Tuesday, June 18, 2019

It's not hard having cerebral palsy, he told me

Max's class is studying the human body, and his teacher assigned him a report on the muscular system. I thought it could be a good way to have another conversation about cerebral palsy. Little did I know.

We settled onto the bench on our porch, a favorite place to do homework. First up, we had to decide on a cover photo for the PowerPoint presentation. Max scanned Google images. At first, he was leaning toward this brawny babe and I was all for it.

Ultimately, he decided to show off his own muscles, and I took the hunky pic above of him flexing. Calendar material, that boy! 

We went through a couple of books we'd gotten from the library. We discussed the three kinds of muscles—skeletal (or voluntary) muscles you can purposefully flex, smooth muscle used to connect organs and the heart muscle. Max was particularly into the digestive muscles because they process his favorite food, steak, among others. 

Fun fact: your jaw is the strongest muscle in your body. Don't you always learn lots helping your kids with homework?

After he'd finished with the information he needed to present, I asked if he wanted to say something about cerebral palsy. 

Max gave me A Look.

"No!" he said.

"Max, maybe you could explain how having cerebral palsy affects your muscles," I said. "You could talk about how sometimes it can be hard to move your fingers, even though you do a great job."

"NO, IT'S EASY!" he announced. And to prove his point, he leaned over to the table, picked up my phone and held it, triumphantly.

OK, then. 

"Max, do you maybe want to talk about how cerebral palsy can affect your speech?" I asked. We'd discussed how the tongue is a muscle. 

"NO, IT'S EASY TO TALK!" he said. "SEE?"

He seemed to be getting a bit perturbed. And who am I, a person who doesn't have CP, to tell him that it's challenging? Yeah, I'm his mom and all, but I have no idea what it feels like to be in Max's body. And maybe movements are not difficult to him, even if it at times it looks that way to me, because he's used to working through them and doesn't think twice. Or maybe he's in denial that sometimes, certain things are challenging. Or maybe both?  

But if he's telling me it's easy for him to have CP, then easy it is. 

Good to know. 

Monday, June 17, 2019

The best and safest bug repellent for children and their worried parents

Mosquito season is here. Tick season is here. Your-kids-don't-want-to-come-inside season is here, too. How to not let the bugs bite? Long sleeves, long pants and bug spray, of course—plus spraying clothes with a protective substance (more on that below).

If you're like me, you'd prefer to avoid bug repellent that contains DEET even though scientists consider it safe and effective when used as directed. Still: chemicals. After doing my research, I've settled on Repel Lemon Eucalyptus, a DEET-free alternative that works.

Oil of lemon eucalyptus is a refined version of a compound that comes from the gum eucalyptus tree. Consumer Reports' testing of insect repellents found that Repel Lemon Eucalyptus, which contains 30 percent of oil of lemon eucalyptus, warded off mosquitos and ticks for at least seven hours and worked as well as DEET. It smells verrrrrry strongly of lemons, but not chemical-y. Note: It is not recommended for use in children younger than three as it can cause temporary eye injury, likely because it contains ethanol. (No insect repellent is recommended for use on infants under two months old.)

FYI, lemon eucalyptus is not an essential oil. Actually, none of the essential oils Consumer Reports tested— including cedar, cinnamon, citronella, clove, geranium, lemongrass, rosemary, and peppermint—provided good protection. Some people like picaridin as a non-DEET ingredient, but products with it didn't score as high in Consumer Reports' testing.

If you prefer to use DEET, go for one that has a 25 to 30 percent concentration (but not over that). The top-scorers are: Total Home (CVS) Woodland Scent Insect Repellent, Off Deep Woods Insect Repellent VIII Dry and Ben's 30% DEET Tick & Insect Repellent and Coleman Insect Repellent High and Dry 25% DEET.

Another proven tactic for warding off mosquitos and ticks, recommended by The U.S. Centers for Disease Control: spraying permethrin on jackets, shirts and pants, which kills mosquitos and ticks on contact. The insecticide, which goes only on clothes, is odorless and lasts for up to six washes. I use this stuff: Sawyer Premium Permithrin Insect Repellent. It's not a substitution for bug repellent—use both. Follow the label instructions for applying, don't put on skin or apply to clothing while it's worn, spray enough so that the material is damp, let fully dry (that'll take a few hours) and wash permethrin-treated clothing separate from other clothes. You can also buy permethrin-treated clothing.

Wishing you a happy, no worries summer!

Friday, June 14, 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: This is prom as he knows it, and it's all good

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, June 13, 2019

He's not just Daddy, he's his BFF

"Daddy's so nice!" Max often likes to announce, out of nowhere.

"Yes," I'll agree, "he's the best Daddy."

And he is. The thing is, Dave isn't just dad—he is Max's best friend. The reality of Max's life is that he doesn't have friends to hang out with after school or on weekends, like other kids do. It's the way things are. Max is perfectly content with this relationship. Dave, too.

Together, they like to visit Max's home away from home—that would be Home Depot—where Max zooms around a cart and eyeballs appliances for his fantasy home in Los Angeles as Dave hangs at the Dunkin Donuts where the guy knows him by name. They'll head out to a steakhouse for lunch or dinner, because Max is currently obsessed with steak and needs to gain some weight, so, yes to creamed spinach too! (Dave is good at finding Groupons so we don't have to take out another mortgage for Max's steak phase.)

They'll go out for shakes, just because. Or to a movie. They'll go for a ride at a race track. They'll hit local fairs or our town's annual music festival and stay out too late. One night, at around 8:30 p.m. when I was beginning to wonder where they were, Dave texted me a picture of Max on a reclining chair looking blissed out: They'd gone to get foot rubs.

They have been on boys' trips to Chicago and Las Vegas (especially because Max wanted to check out the fire trucks he'd seen on YouTube), along with Orlando and Los Angeles.

Daddy is also his hair stylist. Before they have a night on the town, Dave is the one who smooths gel into Max's hair. Max and he will come down the stairs looking all duded up, just two guys ready to have a good time.

Neither Dave nor me could have envisioned this relationship when Max was a tot. For one, he couldn't handle new places, mainly because he had sensory issues and the noise and hubbub were too much for him. Max has mostly outgrown the sensory stuff (going to Monster Jam last weekend was a milestone of sorts). Max also had limited communication skills back then. And now, these two talk up a storm.

They've had a whole other level of connection in recent months, thanks to Max's Apple Watch. We got it for him so we could keep track of him on bus rides or when he's out for walks, and to enable communication since holding a phone and typing on it isn't yet in his repertoire of movement. He now texts Dave constantly: to let him know about weekend plans, tell him what he's up to or inform him that he'd like, wait for it, steak for dinner.

Maybe they don't do "typical" things fathers and sons do, like go on hikes or go for runs or toss a football around in the backyard. But as Dave and I have learned, typical is overrated and their outings and adventures are their normal. Maybe people who don't know better look at them and think, Awww, that man is awesome for being there for his son with disabilities. But the reality is, Dave doesn't think of Max as his disabled child—he is his awesome older son, period. Dave enjoys their outings as much as Max does. He enjoys Max's company as much as Max does his. They are true friends. And I will spare you the details of their fart jokes.

Dave was on a business trip this week and called in the other night.

"Hi, Daddy!" Max said. As usual, Max had texted him throughout the day—on his bus ride to school, during lunchtime, on the bus ride home, when he got home, before he ate dinner.

"I love all your texts, Max!" Dave said.

And he meant it.

Happy Father's Day to the best Dad.

Wednesday, June 12, 2019

Monster Jam, Max style: a post by Max

Max had a whole lot of thrills this weekend, courtesy of Monster Jam. He'd decided he wanted to go a couple of months ago; I was skeptical. This is a boy who used to run out of restaurants, screeching, because they were too loud for him. He's come a long way but still: Monster Jam?! Max was so confident, he said he didn't need his noise-blocking headphones (Dave brought them anyway, just in case).

Things started with an early access Pit Pass at the MetLife Stadium in New Jersey, where Max got to greet drivers, check out trucks up close and even ride in one. As the show started, Max decided it was going to be too loud for him. I considered this progress—being able to advocate for your own needs is key for Monster Jam and life in general. After Dave talked with Guest Services, the two of them were shown to a suite. And then Max sat mesmerized for the next three hours. "He literally did not tear his eyes away, except for eating ice-cream," reports Dave. "When the cars jumped, Max would yell 'YEAH!' He was so into it." 

I'll let Max explain it in his own words. So proud of this boy and his monster spirit.

I went to Monster jam with daddy

There were a lot of big trucks

I rode in a big green truck. It was very so fun.

It was a little loud I was inside.

The trucks went up in the air there was fire.

I ate cheesesteak and ice cream.

I liked it a lot. I'm going back next year.

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