Friday, March 27, 2020

The Disability Blogger Weekend Link-up: Let's get together


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way 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 you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: The most feel-good thing I've seen all week

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.

Thursday, March 26, 2020

The most feel-good thing I've seen all week


Yesterday, someone at work shared this photo snapped by a friend's sister, a nurse in the emergency department at Morristown Medical Center in New Jersey. The man standing at the glass doors of the ER is holding a sign that reads: "Thank you all in Emergency for saving my wife's life. I love you all." The staff there doesn't yet know who the man is.

I sat on our couch last night and just stared at this man and his sign. CNN was on in the background, and as experts spoke about the growing number of people stricken with the coronavirus and growing concern about lack of equipment, it felt so heartening to know that just this one woman had been saved. It felt good to consider the waves of gratitude I've been seeing coming toward healthcare workers. That little bit of good news was major.

I continue to beam good health vibes at all of you.

Photo credit: Allison Swendsen

Wednesday, March 25, 2020

A prayer for you, from Ben


Now that I am Ben's nursery school teacher, along with the kajillion other jobs I have picked up in recent weeks (I'm Chief Disinfector at our house!), I've found out some cool stuff about his day at school. My favorite: His class has a daily prayer, and the kids sign as they say it.

Every morning, at our designated 10:15 a.m. prayer and snack time, we say it together. It is the highlight of my day.

We could all use some prayers, and a reminder to count our blessings, right now. Here's one for you, from Ben. xo

Tuesday, March 24, 2020

The story of our disinfecting wipes spy-angel


If there's any goodness coming out of this whole coronavirus nightmare, it's people looking out for each other. Neighbors post in our local Facebook group asking if anyone needs anything at the grocery store. (Shout out to Matt, who snagged Trader Joe's mac 'n cheese yesterday, a Max staple.) People are donating protective supplies to pediatricians and doctors, crafters are making masks. There are win-win fundraisers happening in our area which people donate to local restaurants and they provide meals for hospital staffers working the front lines of the coronavirus war.

Our family is the lucky beneficiary of some Costco kindness. The story begins with a balance bike of Ben's that I posted on our local Facebook swap group the other week. A bunch of people responded and I went with the first one, a lady in a neighboring town who offered to come pick up the bike the next day. She messaged me that morning to say she couldn't stop by until later because her husband works at Costco and they had asked him to extend his hours.

COSTCO?! HE WORKED AT COSTCO?! I'D FOUND A CONNECTION AT COSTCO?

Ohhhhhh, boy.

We were well aware that stock was running low there; friends who had made the trek had posted photos on Facebook of the bare towel paper and t.p. shelves. In our eagerness to keep Bad Germs from spreading, we've been using paper towels to dry our hands instead of fabric hand towels—they're more sanitary. We knew that the situation was ramping up here and that we wouldn't want to leave the house to get anything for a while.

And so, I decided to get some intelligence and I asked this stranger if she knew what our best shot was at getting paper towels. She immediately responded, and told me to get to the store around 8:15, grab a parking spot where we could see the front door and get in line as soon as one started. "It's crazy there every day," she said, "but you can be the first ones there." Also, she added, "expect people to be running with carts as soon as they get past the checking of memberships."

Whoa. We didn't have time to train for The Costco Olympics. Also, was it worth the risk of going to the store? Maybe, if they had disinfecting wipes. So I asked if the store had those. She said no, then kindly offered to keep us in mind if a truck came in. I thanked her.

And then, this lovely woman showed up to grab the bike and handed over a canister of wipes. She refused to accept any payment. I thanked her profusely. Never in my life would I have thought that a canister of Clorox disinfecrting wipes could bring me to tears.

Last Thursday at 7:09 a.m., she messaged me to say Costco had gotten Clorox wipes. Dave had to get there at 8 a.m. They were only letting fifty people into the store. There was a limit of one package per person. They were by the front register. She shared a photo of where the wipes were, zapped to her by her husband.

Once again, I told her how grateful I was, noting that our exchanges were straight out of a spy movie. Dave dashed out of the house, ended up being the fourteenth person in line, waited more or less patiently, ran-not-walked in when the doors opened and scored a package of wipes. He instantly sent me a photo of them, so excited was he. A five pack! I shared the pic with my Costco spy/angel.

"You developed a great mission and Dad executed it well," she said.

I told her he'd be receiving the Costco Bravery Award when he returned home and that someday, when this had all ended, I'd like to thank her in person. Dave passed the good vibes along and gave a canister of wipes to our babysitter.

Things may be bad out there, but there is also a spirit of kindness, goodness and generosity in the air. I'm taking comfort in that.

Monday, March 23, 2020

A new normal


We took a walk on the local golf course yesterday. It was totally and eerily empty, just us walking over the grass. It felt good to feel the wind on my face and to hear Ben's laughter as he dragged a stick through the sand traps. On the way home, we saw messages of love and hope written in chalk on the sidewalk. That felt really good, too. I'll take whatever hope we can get. We live in New Jersey, and we're on lockdown. 

Life in our new Stephen King existence means that once a day, we get out to take a walk outside or ride a bike on our street. Twice a day, I swipe down everything with disinfectant wipes except the kids. I say things like "Don't use too many paper towels!" I stayed up till midnight last night to snag a grocery delivery spot for a week and half from now (we're not going out to the supermarkets, it's too risky). I need to figure out stuff to make with the five pounds of pearl barley I panic-ordered. 

Dave and I are just doing our best to juggle the care and feeding of the kids, house stuff, our jobs, and schoolwork and to exude a calm and cheer we don't feel. Sabrina and Max are doing virtual learning—their schools got going on that last week which keeps them occupied for part of the day. There's not much happening with Ben's preschool yet, although he has a whole lot of toys and a sister who loves doing TikTok videos. The kids have all been pretty adaptive so far about our new normal, and make good use of their electronic devices. *UNDERSTATEMENT*  

I was worried Max would have issues staying home because he and Dave love going on adventures that mostly involve eating, but he has the maturity to understand there are bad germs out there and this is the way things are, and for that, I am really, really grateful. I am also really grateful for Trader Joe's mac 'n cheese, because we're eating a lot of of that around here. 

Max has always loved iPad anything, and so the Zoom meetings with his teachers and therapists work well for him. He has class from 9 to 11:30 or 12:00 daily, depending on his therapies. Other times, he enjoys making lists, like what he plans on doing in California when he moves there. Here he is on Friday, doing PT with his therapist. 


Homework for Max starts this week. He got a packet from school, and his teacher has been emailing worksheets. Yesterday, I finally organized folders for his school subjects and therapies. Max sits in his new classroom, aka our dining room, and does his thing with help from me or Dave. Sabrina's classroom is her bedroom or our basement. Ben's classroom is the den.

Sabrina made a sign to keep Ben out of her room when she's learning, so Ben made one, too:



For the last few months, when Ben wakes up in the morning he asks if it's a family day or a babysitter day. Now every day is a family day, and he's been pleased with that. He did ask yesterday when he was going back to school, which kind of broke my heart. Ditto for when Max told me that he was looking forward to camp, because I am just not sure that's going to happen this year. 

I am trying not to watch or read the news that often throughout the day. And making Zoom dates with family and friends. And disinfecting and disinfecting some more. And washing my hands and making sure everyone washes theirs. And taking this one day at a time. That's one major thing Max has taught me—trying to peer into the future can be terrifying. Especially right now.

Beaming hugs, good spirits and strength at you.



Friday, March 20, 2020

The Disability Blogger Weekend Link-up is here for you


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way 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 you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: 15 things nobody ever said before the coronavirus struck

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.

Thursday, March 19, 2020

15 things nobody ever said before the coronavirus struck


"HONEY! I SCORED A WHOLE PACKAGE OF T.P.!"

"Can the virus stick to an avocado?"

"Is it bad if I don't disinfect the mail?"

"Kids, finish breakfast and go to your rooms for class."

"Do you think the Amazon workers wear gloves when they pack up boxes?"

"Does anyone we know have an N95 mask?"

"Cant' wait for cocktails tonight after work, see you on Zoom!"

"I could open my own sushi restaurant with the 26 pounds of rice in my pantry."

"The line to get into Costco was only a half hour long this morning."

"Honey, did you Lysol the box that just got delivered?"

"Let's take a walk, just stay six feet away from everyone."

"Could we use Starbucks napkins if we run out of t.p.? Maybe we should start hoarding them. Oh, but that would mean one of us has to go to Starbucks."

"Can the virus stick to your shoes?"

"I just organized my pantry for the sixth time this week."

"I am so over singing Happy Birthday."

Wednesday, March 18, 2020

Great stuck-inside family activity: A fill-in-the-blanks family journal


A couple of years ago, I got a family journal as a gift. It's a fill-in-the-blank book with questions like what a typical Saturday morning looks like, our most treasured possessions, games we like to play, favorite places in the house and how to sum up the family in three words. This journal has been sitting on my desk, mocking me with its presence ever since. I mean, what kind of mom doesn't have time to do something as awesome as fill in a book of memories with her family? This mom.

Now that we're all stuck at home, though, we have lots and lots of time and I desperately need ways to fill it. Finally, we're doing the book! I'm sharing about it, and others—plus memory books you can help kids and teens fill out and ones for couples, too. If there's ever been a time to celebrate family and life, this is it.






ALSO! 
Journal books to help kids and teens fill out

Tuesday, March 17, 2020

Coronavirus cleaning tips: The right and wrong ways to disinfect a house


I wasn't germphobic until the coronavirus hit and now, germs are all I think about. Which is why I was up at 1:30 a.m. last night, swiping down our kitchen cabinet handles with disinfecting wipes.

I've been reading up on the right (and wrong!) ways to clean and disinfect homes. A new study on the novel coronavirus found that it can stay on surfaces for days, including plastic and steel for 72 hours. Although our family is staying put inside our house for the foreseeable future, Dave and I have ducked out a few times for groceries and last weekend all of us took a walk on a trail, so I'm not taking any chances. Here are some key tips I've picked up. Your best defense of all: Wash your hands for 20 seconds.

Use cleaning products that combat coronavirus

Here is a complete list of cleaning products pre-approved by the U.S. Environmental Protection Agency for use during the coronavirus outbreak, including Clorox, Lysol and Microban. Bleach (4 teaspoons bleach per 1 quart water), rubbing alcohol and hydrogen peroxide (typically sold in concentrations of 3%) also work. White vinegar, tea tree oil and other natural solutions do not work to kill coronavirus. And, surprise, good old soap and water are great if you're game to scrub, as a chemist and member of the American Chemical Society told Consumer Reports: "Scrub like you've got sticky stuff on the surface and you really need to get it off."

Have your coronavirus gloves

If you're not using disposable gloves, dedicate a pair of reusable gloves to disinfecting, clean your hands right after you take them off and stash them in a plastic bag.

Disinfect the right way

When you use disinfecting cleaner or wipes on cabinet pulls, door knobs, door handles (one of the dirtiest surfaces in a house), light switches, faucets, and toilet handles, the surface must remain visibly wet for several minutes, or the prescribed amount of time on the package instructions. For Clorox disinfecting wipes, for instance, that's four minutes. It may take several swipes to make sure the item is fully wet—see this video from Carolyn Forte, director of home appliances and cleaning products for the Good Housekeeping Institute.


Disinfect your devices, too

It's safe to use disinfecting wipes and 70% isopropyl alcohol on your phone screen or keyboard, according to the folks at Apple, The Samsung people say the same. Don't forget the TV remote controls.

Know that paper towels are your friend 

Yes, paper towels are in high demand, but they are far more sanitary to use than towels. If you need to have anyone over at your house, remove the towels and keep paper towels handy. And for sure use them for anyone in your house who is sick. I've seen recommendations to keep a separate towel for each member of your family. With five of us here, I feel like nobody's going to remember to use their dedicated towel so I haven't tried that but yay if it works for you.

Don't walk around the house in shoes

Make everyone leave their shoes at the front door—outside it, if possible. In ordinary times, research has shown that shoes are covered in gross stuff (namely: poop). This is no time to be trekking crap into your house.

Take off your outside clothes at home

A couple of years ago, I read a viral post called "Please don't sit on my bed in your outside clothes" that stuck with me. Because of coronavirus cleanliness paranoia, when I've gotten home from being out these last few weeks I'll change clothes, putting the dirty ones in a plastic bag in the basement. True, coronavirus is less likely to live on fabric—as one expert explains it, the small holes in porous surfaces trap microbes. But see: "coronavirus cleanliness paranoia." Oh, and don't forget to wash the clothes hamper liner.

Image: Flickr/Jim White

Monday, March 16, 2020

Special needs moms, we've got this


I cried when I read that the playgrounds in our town would be closing. I knew it would happen; the rules of our new "social distancing" existence dictate that kids shouldn't be playing together. Still, it was the culmination of a week when life as we knew it fell out from beneath us. My office closed. Sabrina's school closed, then Max's. Local businesses locked up, the library shut down, Broadway went dark. Supermarket shelves were wiped clean. Costco had lines down the block, and it seemed like you were as likely to come to harm from a toilet paper stampede as from the coronavirus.

Max and Sabrina will both be learning virtually. Max's school is using Zoom (classes started this morning) and Sabrina's, Google Meet. (Here's a good article on the rights of your child with disabilities during the coronavirus outbreak.) We may be trying virtual speech therapy and possibly music therapy, though I'm unsure about that. As one speech therapist I know said, "It's totally doable for more situations than you'd think but definitely involves more forethought on both the therapist and family's part." Max only gets physical therapy at school these days so he'll be missing out on that, and we're actually in between OTs right now.

Am I anxious, worried, scared? Of course. Besides the baseline concern of staying healthy and keeping our household running, there are so many unknowns and unique concerns for our children with disabilities. How will they deal with the disruption of routines? How will they learn without a teacher in front of them and their aides? How will they do therapy? How will they handle being apart from peers for so long? How will they continue to thrive and grow? How oh how will we occupy their time?

And yet, when I reach beyond the anxiety, I find something else: the knowledge and security that I have been through the vast unknown before and figured things out. We all have, as parents of kids with disabilities.

At first, when our children were born or first diagnosed...

We grieved.

We despaired.

We worried about the great unknown.

We had no clue how to help a child with disabilities.

We didn't know how to find good doctors, how to speak the lingo, how to deal with the insurance company.

We had to learn it all, except how to love, because we always loved our children like any others.

And now? Look at us. We know what our children need, and how to get them the resources they deserve. We've put great teams in place to support them—doctors, therapists, specialists. We know how to advocate for them. We know how to make things work, even if the insurance company makes things more difficult than they need to be.

WE FIGURED IT OUT.

We may feel powerless in the threat of the coronavirus, but we will do everything within our powers to keep our families healthy. (If you haven't read much about social distancing, here are two good articles on it: The Dos and Dont's of Social Distancing and Social Distancing: This is Not a Snow Day.)

We know by know, thanks to the connections we've forged through social media, blogs and our local posses, that we have each other. And we will share resources, support, strength, laughs and more laughs. And we will all be right here in cyberspace because, er, where else can we go?! We can set up Facebook time hangouts for our kids. We can try teletherapy sessions if possible and see how those go, or get the therapists to give us specific to-dos to try at home. We can set up new routines, and find new ways to engage our kids. I've been tapping my local mom's group for ideas and info on cool livestreams like 12 famous museums that offer virtual tours and the Metropolitan Museum of Opera's Nightly Met Streams, starting today until the Met reopens.

And for sure we have other kids to juggle and for sure there will be fights and tears and lots more anxiety and we will go stir crazy. Maybe you already ARE going stir crazy or your child is but keep in mind things are just kicking into gear. Your child will settle into a new routine. Your family will, too.

WE WILL FIGURE IT OUT.

Max had seemed a little dubious about virtual learning—he likes his routines. I was so grateful to his school for getting a plan in place so fast. We set Max up in our dining room, Dave got Max connected to Zoom and suddenly, there was his teacher and classmates right there on his iPad. Max giggled. Ben popped his head into the camera and announced "I don't have school, either!" before we ushered him out.

Sunlight streamed in through the window. I watched Max respond to his teacher's questions, and I felt hopeful.


For more inspo:

Friday, March 13, 2020

The Disability Blogger Weekend Link-up: Take your mind off coronavirus


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way 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 you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Explaining coronavirus-cancelled activities to kids with disabilities

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.

Thursday, March 12, 2020

Explaining coronavirus-cancelled activities to children with disabilities


Max was supposed to have a bowling trip and a sleepover at his school this Friday night. He'd been looking forward to it for months. This weekend, I told him that it might not happen, but he didn't want to believe me. Tuesday, it got cancelled. I told him when he got home from school, expecting the worst.

Me: "Max, I'm sorry but there is no bowling trip on Friday."

Max: "Sleeping over?"

Me: "No, you're not sleeping over."

Max [pauses, then responds]: "It's OK. Sick!"

As in, Max did not want to get sick. I was floored that this hadn't been such a big deal. I was proud of how mature he was being.

In the scheme of concerns parents have in these coronavirus times, figuring out how to let a child know an activity has been cancelled may seem like small potatoes. But if you're that parent, it's not. Children and teens with intellectual disability may not understand what is going on. They may have over-the-top reactions involving tears or total meltdowns. Then there's the matter of finding ways to fill the time of cancelled activities.

As hard and meltdown-y as it may be, it can help to give a child a heads up that things may not work out. Max didn't want to think it was true, but even so, I planted a seed. It might help to have a visual aid to explain coronavirus, as necessary—I like NPR's coronavirus comic that you can print out and fold into a zine. It's also good to offer an alternate activity, to soften the blow. I promised Max I will take him bowling when it's safe to go, and challenged him to an air hockey tournament at home this weekend, with a prize being an L.A. t-shirt since he's bent on moving there.

Children and teens with autism can pose different challenges, as a friend with an autistic teen son is experiencing—and she's hoping for some crowdsourced solutions. They live in Boston, which every April celebrates Patriots Day to commemorate the opening battle of the American Revolutionary War. There are reenactments, pancake breakfasts and a parade. Every year, their Best Buddies chapter makes a float and kids ride on it. It's more than likely to get cancelled this year, and she has broached the topic with him. Her son, who talks about the event non-stop all year long, is not having any of it. He'll tell her that it's not raining, there will be a parade.

"But it's not cancelled, there will be a parade," he'll say. And then he'll repeat the same throughout the day, again and again and again.

If you have ideas that help when a child perseverates in this way, please share here.

Wednesday, March 11, 2020

7 ways your child can have more fun practicing speech


This guest post is by Becca Sylvia and Kristi Stearns, two speech pathologists based in Denver and New York City who have recently started the blog Communication Community. Their goal: to demonstrate that communication is for everyone, regardless of age, abilities, or speech or language skills.

How Your Child Can Have More Fun Practicing Speech

It’s true what they say—time does fly when you are having fun. That’s definitely true of speech therapy, as you may have noticed if your child starts fidgeting or getting antsy when working on repetitive articulation drills. Or maybe a session has sped by when they’ve gotten into a game or activity. As speech therapists, our favorite moments are when a session is over and a student asks, “So are we going to do speech today?”

When you and your child are practicing the sounds your speech therapist is working on with them, it’s easy to make it more fun. These are some of our favorite ways.

1. The Speech Restaurant

In this game, your child can “order” speech sounds while playing restaurant or store.  Offer “menu options” that are target speech sounds or words. For example, you can make a menu with the target sound(s). You could also just ask, “Would you like a /sh/ or /s/ today?” You can also change it up and have your be the server or cashier and take your order as you model proper sound production.

2. Scavenger Hunt 

Do a scavenger hunt looking for the target sound(s). Once the target sound is found, encourage the child to say it. This can be pre-planned—you hide cards or objects with the target sound(s) around a room. Or it can more spontaneous, where you search for objects or words with the target sound(s).

3. Let’s Kick It

Pick a favorite activity or sport and have your child work on sounds while playing:
• Playing catch: Take turns tossing the ball back and forth, saying each target sound for each toss
• Soccer: Say the target sound, then kick the ball into net or dribble to a certain spot, stop, say the target sound, then continue dribbling.
• Basketball: Your child can shoot a hoop for each target sound said.

4. Sing-a-long


Make up a song or adapt a song with the target sound—for example, “Old MacDonald had a /g/, gee I gee I oh!” You can also sing “BINGO,” but with target sounds instead of the letters B, I, N, G, O.

5. Hands On

Incorporate something tangible into therapy exercises to grab a child’s attention. You can do coloring pages, providing an assortment of target sound(s) written or drawn on a piece of paper. When they color over that sound, they have to say it. Or you can create a simple puzzle you cut up out of cardboard, and each piece has a target sound written on it. When it’s placed together, they say the corresponding sound. So they say all of the target sounds assembled in the puzzle? When putting a puzzle piece together, do they say the target sound then, too?  Yes and yes

6. Reward Time

Give your child an opportunity to earn rewards for their efforts. Some children may need a reward after three exercises completed, but may be able to work up to 5 or 10 or more exercises completed. A reward can be tangible (like a sticker or small action figure toy) or a reward of time (like a five-minute break to play with the dollhouse).

7. Bedtime Reading

There are many fun books that are great for eliciting different target sounds. Some of our favorites for certain letters:

  /b/ - Five Little Monkeys Jumping on the Bed by Eileen Christelow
/ch/ - Chicka Chicka Boom Boom by Bill Martin Jr. and John Archambault
/d/ - No, David! By David Shannon
/f/ - The Rainbow Fish by Marcus Pfister
/g/ - Goodnight Moon by Margaret Wise Brown
/h/ - Hop on Pop by Dr. Suess
/j/ - Sheep in a Jeep by Nancy Shaw
/k/ - Caps for Sale by Esphyr Slobodkina
/l/ - Llama Llama Red Pajama by Anna Dewdney
/m/  Are You My Mother? by P.D. Eastman
/p/ - If You Give a Pig a Pancake - Laura Joffee Numeroff
/r/ - Red Rubber Boot Day by Mary Lyn Ray
/s/ - Silly Sally by Audrey Wood
/sh/ - Sheep in a Shop by Nancy Shaw
/t/ - Ten Apples Up on Top by Dr. Suess
/w/ - Mrs. Wishy Washy series by Joy Cowley and Elizabeth Fuller

We hope this list sparks some fresh ideas! Remember, shoot for progress, not perfection. And keep up with the positive reinforcement—verbal praise, high fives, fist bumps, or whatever your child responds to.

Happy therapy!

Best,

Becca and Kristi
Communication Community

Tuesday, March 10, 2020

Twitter starts to protect disabled people from hateful language


Twitter announced last week that it would expand their Hateful Conduct Policy to include language that dehumanizes people with disabilities. They will remove tweets that do so, along with ones that dehumanize on the basis of age or disease. As one example, they shared the tweet "People with [Disability] are subhuman and shouldn't be seen in public."

As their new policy states, "We prohibit targeting individuals with repeated slurs, tropes or other content that intends to dehumanize, degrade or reinforce negative stereotypes about a protected category."

It's about time Twitter took action—for years, vile remarks about people with disabilities have been flying around. Slurs, too. Longtime readers of this blog might remember that time when I tweeted at people using the r-word. These days, the word is less prevalent but it's there and ccontinues to be used as a synonym for stupid, loser and now, Donald Trump.

The words people read on social media matter, as Twitter is finally owning up to. Facebook's "Hate Speech" section in its Community Standards also includes people with disability—although they are fine with keeping pages such as "You just went full Retard, Never go full Retard" (random capitalization as per the page, of course). Instagram's Community Guidelines also mention disabilities, but it tolerates hashtags like #retardedmemes and accounts like "retard_alerts."

Since yesterday, I've been reporting the hashtag and word when I see it on Twitter; Donald Trump will still have to defend himself. The tweets haven't yet been taken down, so it's unclear whether Twitter will agree this word is dehumanizing—although there's no question that it is. To report a tweet, click on the downward arrow bar on the top right of the tweet, then click on Report Tweet.

Word.

If you want more background on the r-word:

Video: Would you call my child a retard?

Monday, March 9, 2020

A 100-year-old mom cares for her son with Down syndrome


I read an amazing story this weekend that also left me troubled. It's about a single mother in East Hanover, New Jersey, who turned 100 years old last week. That in itself is remarkable. Even more so: She continues to care for her 57-year-old son, who has Down syndrome and autism.

Carmela "Millie" Scarnato has been on her own with Leonard since her husband left them when Leonard was three, reports the Morristown Daily Record. At a time when it wasn't uncommon for parents to institutionalize children with disabilities, Carmela wouldn't have any of it. To this day, she takes care of bathing, dressing and feeding Leonard, and there's a daytime caregiver who pitches in.

"People ask me, why don't you put him away? Never. I will never do that," she said. "Something happens to me, that's a different story. I won't be here anymore. But as long as I can take care of him, I'm taking care of him."

Oh, man. Grab the tissues. Because if you are the parent of a child with disabilities, you are not sobbing because of this mom's amazing dedication. No, you are that mom, even if you are decades younger. You are crying because of the worry you don't voice that is always, always there is: Who will care for my child the way I do when he's gone? Who will love him the way I do? Who?

Your child may have siblings—Leonard has two, who presumably will be there for him. Perhaps you've done some estate planning and chosen guardians, or you will. (Here's some info on special needs trusts.) We put together a letter of intent just in case Dave and I were to unexpectedly pass. A letter of intent contains a detailed explanation of all your child's needs and support systems (here's a good letter of intent you can download and fill in). But you know that nobody will take look out for your son or daughter quite like you or your spouse. This thought flashes into my mind on occasion when I'm doing something for Max, like brushing his hair or rubbing cream into his skin. Or when he and Dave walk in the door from one of their day trips in New York City and Max announces, "Daddy is my best friend!"

It's too mind-boggling and painful to ponder, this thought. And so you leave it there in the back of your mind.

Someday, you will deal, but not now.

Image: Dennis Scarnato

Friday, March 6, 2020

The Disability Blogger Weekend Link-up: Let's NOT talk about coronavirus


What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way 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 you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: How to encourage children to include ones with disabilities

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.

Wednesday, March 4, 2020

How to encourage children to include ones with disabilities

Today is Spread the Word: Inclusion Day, dedicated toward raising awareness about including people with intellectual and developmental disabilities in life. Spearheaded by the Special Olympics, it evolved from their campaign to reduce the use of the r-word. Founders Soeren Palumbo and Tim Shriver Jr., note that the most important thing they learned from their 10 years of doing Spread The Word to End The Word is this: "Inclusion is a skill. Including those who are different is a skill that can be learned, practiced and taught."

It's so true—including children and teens with intellectual disability isn't something that comes easily to many. If, like me, you're the parent of a child with intellectual or physical disability, then you've seen that firsthand And if, like me, you grew up without having many interactions with disabled people, then you also get why kids may be wary or hesitant.

It's true: Parents need to encourage their children to include those with disabilities whether it's saying hi to them, talking to them, roping them into a game during recess or at the playground, sitting with them in the lunch room, inviting them to birthday parties or just hanging out. But ideally, before any of this happens, children understand what disability means. Because while it's true that inclusion has to be learned, in order for it to be a regular, natural part of life, children have to first be comfortable with disability.

Maybe there's a child with disabilities at your child's school, at church or in your social circle who you can refer to in discussions with your child. Perhaps an interaction with a child who has disabilities at a playground spurs a talk about disability. Or maybe there's something in the media, like an ad that features a child with disabilities, that kicks off a discussion—an ongoing on.

Inclusion starts with talking about what's similar between your child and ones with disabilities, since different can be intimidating and scary. Talk with your child about the fact that children with disabilities can enjoy many of the same things they do—ice-cream, toys, trucks, dolls, watching Paw Patrol, playing in the bath, going on trips with their families, whatever. Note that children with disabilities have families who love them, just like you love your child.

Inclusion also starts with children understanding the whys behind different. A child with autism may flap his arms because it is his way of calming himself down when he gets anxious. A child with autism may not want to look people in the eye because it is too overwhelming to him. A child with cerebral palsy may not speak, walk or use his hands like other people because his brain can't send certain messages to his muscles. (Notice that I didn't use the wording "use his hands like normal people" or "his brain can't send the right messages" because I think it's good to keep language neutral to avoid making it seem like children with disabilities are defective or abnormal.) A child with Down syndrome or intellectual disability may take time to learn things because that's the way his brain works.

Inclusion begins when a child understands how children and adults with disabilities can be active, engaged, enabled and capable. A child might use a wheelchair or walker to get around or have foot braces to support his feet. A person might use a communication device to help him say words, along with nods and gestures. When you're out in public, seize the teaching moments. People in wheelchairs can press buttons to automatically open doors in buildings; show your child those buttons. There are wheelchairs with giant wheels that let people with disabilities glide over sand and into water; show your child those wheelchairs. There are lifts that can help people with disabilities get in and out of pools, and they exist to make sure that people with disabilities enjoy themselves, like anyone can. Show your child those lifts. There are parking spots reserved for people with disabilities close to stores and buildings; show your child those spots.

And inclusion begins with understanding that this world is a better place because there are so, so many kinds of people. Talk about the glorious variety that is humanity—the ways people look, talk, behave, exist. There are many books out there about children with disabilities, including We Can Do It! by Laura Dwight, Don't Call Me Special: A First Look at Disability by Pat Thomas, Leah's Voice by Lori DeMonia (about autism) and Yes I Can! A Girl and Her Wheelchair by Kendra J. Barrett. But I also like ones that organically include children with disabilities, like The Barefoot Book of Children: It's an exploration of children all around the world, and the illustrations include children with disabilities. Whoever You Are by Mem Fox and A Rainbow of Friends by P.K. Hallinan are also good.

I'll leave you with two award-winning short animated films that could inspire a good discussion with children. The first, called Ian, is based on a fourth-grader named Ian with cerebral palsy who lives in Argentina. The film came about thanks to his mother, Sheila Graschinsky.


The other film, Cuerdas (which means "strings" in Spanish), was written and directed by Pedro Solis Garcia. His son, Nicholas, has cerebral palsy and he found inspiration in the way his daughter, Alejandra, treated her younger brother.

 

Tuesday, March 3, 2020

Summer camps for kids and teens with disabilities


Yesterday, the weather was gorgeous. Ben rode his bike, Max chilled on our front porch and I started thinking about summer camp. Here's a list of summer camps for kids and teens with disabilities, including day programs and sleepaway camp. Feel free to add any you know of in the comments!

Very Special Camps lists camps and programs for people with special needs around the country; you can browse by disability or by state.

KidsCamps.com also lists camps by state, and specifies the types of disabilities accommodated.

My Summer Camps lists camps by disability, which you can then filter by state.

Easter Seals Disability Services has 30 accessible camps around the country—for adults, too.

Federation for Children with Special Needs lists camps for kids with special needs by disability.

Cristo Vive International provides Christ-based camp programs for children with disabilities around the world; there are a few locations in this country.

Serious Fun Children's Network is a global community of 30 camps and programs for seriously ill children, founded by Paul Newman. Some accept children with cerebral palsy; Max has been to the Double H Ranch in Lake Luzerne, NY.

One Happy Camper lets you search for Jewish camps with inclusive programs. Ones I can vouch for: Yachad's summer program (in NJ) and the Ramah Tikvah program (in NY, PA, MA, GA, CO, WI, CA and Canada and more), which are both inclusionary. I have also heard good things about Camp HASC in Parksville, NY, which follows IEPs.

Check your local Kiwanis Club, as the group has some camps for children with disabilities.

A couple of notable camps for children and teens with special needs in the tri-state area, my neck of the woods: Southampton Fresh Air Home in Southampton, NY; Elks Camp Moore in Haskell, NJ; Camp Fatima in Harrison, NJ; and the Helen L. Diller Vacation Home for Blind Children in Avalon, NJ. Victory Junction, in Randleman, North Carolina, a camp for kids with serious illnesses, offers a week for campers with cerebral palsy in early June.

Image: Flickr/Kris Krug

Monday, March 2, 2020

It's not easy finding ways to fill the time


Max spent a chunk of the weekend browsing Trulia and Zillow on my computer, specifically, offerings in Los Angeles. The $4,999,999 mansion he chose is a bargain, given that it's been marked down from $5,199,999.

"I want to move to Los Angeles!" he announced. (Favorite phrase No. 1.)

"It's disgusting here!" he continued. (Favorite phrase No. 2.)

Max is equally happy to make lists on his iPad about what he likes to do in L.A. (hang with Dave's friends, eat steak, go to Disneyland, eat In 'N Out Burger, drive around, eat mac 'n cheese at his favorite cafĂ©, eat some more). I'm glad he's found something engaging that also involves writing or  learning to navigate a website. It beats those times when he sits in front of the TV and browses YouTube videos of fire stations and cruise ships. I can hear the Princess Cruise Love Boat horn in my dreams.

Entertaining Max at home has never been easy. As a kid, he wasn't one to play with toys alone because he needed a hand, as it was hard for him to grasp stuff, push buttons or focus. Floor time often felt like a chore because I felt compelled to make playing as therapeutic as possible. Floor time could also get me down, because it made it clear just how significant Max's fine-motor skills were.

As a teen, Max likes electronic devices (you know: teen!), but obviously there's a limit. Which we, er, mostly enforce. Max doesn't talk on the phone with friends, although he likes chatting with family. He reads, but is not into reading books or magazines, even ones about L.A. (I've tried). He does occasional chores, like taking laundry out of the washer and putting it into the dryer. He can work on homework independently, which is amazing, and smetimes he uses the homework practice site IXL. But in general, there's not much that he's into doing inside the house, which explains why he's regularly out "galavanting" with Dave, as Dave likes to say.

It will be easier once the weather's warmer, when Max likes to chill on our front porch and say hello to neighbors or take walks. But for now, I'm cool with letting him roam around real estate sites and fantasize about his future home. I think it counts as a hobby?! Whatever! As is often true of parenthood, whatever works, works.


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