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.

Ellen

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


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