Friday, May 28, 2021

The Disability Blogger Long Weekend Link-up

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: Love That Max: The last time he sucked his thumb, maybe

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, May 27, 2021

The last time he sucked his thumb, maybe

Last night was the last time Ben sucked his thumb. Or maybe I'm wrong and it wasn't, though it could be. It's a habit he's had since he was a baby. Several months ago, it stopped. He used to love to suck his thumb, snuggle on the couch with me or Dave and get foot rubs. Now he just gets the foot rubs. 

I was sad when I realized that he'd stopped, and ebullient when he slipped his thumb into his mouth as I was reading to him at bedtime last night. I snapped this pic and showed it to Dave after he'd fallen asleep.

I've loved the thumb sucking because he looks adorable when he does it, and because it's the last vestige of his babyhood. Having two older children has made me seriously aware of how quickly time passes.

Parents are acutely aware of the milestones in our children's lives and, if you're the parent of a child with disabilities, the inchstones, too. But then, there are the little life passages you only realize in hindsight.

When was the last time I picked up Max and Sabrina? I've wondered.  

When was the last time I held them on my lap after a bath, wrapped in a towel? They were especially delicious after baths.

When was the last time I did floor time with them?  

When was the last time Max wore that Lightning McQueen getup he loved?

When was the last time Sabrina wore that Ariel mermaid outfit?

What was the last aquatic swim session I took Max to? 

When was the last time we took them for a ride on a merry-go-round?

When was the last time they sat at our kitchen table and colored?

When was the last time Sabrina told me one of her nonsensical knock-knock jokes

When was the last time they watched Sesame Street? 

When was the last time they both fell asleep in our bed? 

And so on and so on. Those childhood routines, habits and behaviors slip away unnoticed, along with the sweetness and snuggles. Unless you've had children a chunk of years apart. And now you find yourself relishing having a young child again, and getting overly excited when he once again sucks his thumb.

Friday, May 21, 2021

The Disability Blogger Weekend Link-up: ready, set, post!

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: Love That Max: Ware not a fire pit family and we're still pretty great

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, May 19, 2021

We are not a fire pit family and we are still pretty great

Like many people, we got a pandemic fire pit last spring. It's a pretty round hammered copper one, and I even bought concrete pavers for it to rest on and a cover to keep out leaves and dirt. It fit nicely in the corner of our backyard by the shed, and a neighbor who was moving gave us some chairs to put around it. Cozy, that it is. 

I think we've used it twice. Maybe three times? I'm not sure. Turns out we are not much of a fire pit family, as much as I'd like to fantasize that we are. Sabrina, Dave and I would happily sit around it and bask in its warmth. Ben, not so much (he's not one to sit in one place for more than 20 seconds). Max, even more not so much: He just doesn't care for it. It did come in handy during Sabrina's Sweet Sixteen in January, though.

I've certainly had plenty of other stuff to ponder throughout the pandemic other than the fact that we are not a fire pit family. Like: We also didn't get a pandemic puppy or even a pandemic goldfish or purchase a pandemic PlayStation5. Which makes me and Dave big old pandemic party poopers, I guess? 

Over the years, I've had the occasional pang of regret about the family that we weren't, especially during Max's early years when we didn't go to restaurants, movies or shows together because Max had sensory issues and couldn't handle the din, noise and hustle and bustle. There was one exception: Manny's Texas Wieners, a greasy-spoon cafe near the house that Max tolerated going as long as we got the table all the way in the back, by the bathroom. A.k.a. fine dining at its best.

While Max grew out of most of his sensory issues, we've never been a family who could hike together. Or do activities like Escape Rooms or game night or puzzles together. Or go shopping together (Max gets bored, unless it's Costco and he and Dave would zoom around trying the samples, womp womp, no more.) Often, we split up to do activities—Max roams around with Dave (his BFF) or Dave will take both boys to yoga at his sister's studio. Or I'll take Ben on a playdate. Or I'll go somewhere with Sabrina and Ben. 

Mostly, I've accepted that we are our own kind of awesome family, cookie-cutter version of togetherness be damned. We have plenty of fun (and I'm not talking about the kajillion hours of TV we've watched this past year). We are a family that likes going to local parks, pools, amusement parks and boardwalks. We get a kick out of finding new sushi restaurants to try. Once in a while, we bike together. As often as possible, we travel—last summer we went RV-ing, which was superfun.

It's been a chilly spring, and the fire pit has been sort of taunting me. I remind myself that it all comes down to the same thing I've learned about raising a child with disabilities:

Life may not be what you imagined, but it can still be great.

Friday, May 14, 2021

The Disability Blogger Weekend Link-up likes 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: Elon Musk's announcement: Someday, it won't be a big deal to have a disability

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, May 12, 2021

How I learned to be OK with my child's IEP meetings

This is a guest post by Jane Kim, a writer and mom to a 9-year-old with autism. She works in the field of immigration, and lives with her family in the Philadelphia suburbs. 

We were at 2 hours and 50 minutes, and my legs were going numb. No, I wasn’t running a marathon—I was at an IEP meeting. The intense planning, accountability and bravery involved can feel like doing a 10K. But I was also experiencing another feeling: gratitude, because his team and I had finally reached a mutual understanding.  I choked back tears and thanked them.

I’ve attended three years of IEP meetings for my son, T, in different personas: passive participant, note-taker, hard-liner, solider heading into battle, and on my best days, as co-leader and team player.  The journey has been difficult—I used to take antacids before meetings—but I have finally hit that sweet spot. I attribute it to both the passage of time—and a handful of different things I’ve put into place. 

First, focus on yourself

This year, I wrote a mission statement for myself and set ground rules, too. I kept them in my IEP folder on a sheet of paper that I could pull out and place next to me during meetings (they’ve been virtual). Having it there helped me stay on track and served as a reminder of the ultimate goals of the meeting. 

Mission statement
: With each meeting, for the team to gain a better understanding of T. To focus on his strengths, to address the challenges and to strive for increased independence.

Ground rules: 
Prepare talking points. Accept that T may be different at school than at home. Respect comments and feedback from T’s team. 

Hold the team—and yourself—accountable.

Start by asking the team, “What are my child’s strengths?”
This starts meetings on a positive note and encourages teachers and therapists to see  
how a child’s strengths can help with the challenges that will be discussed. For example, T loves music. If there is a song that can reinforce a difficult concept or behavior he is struggling with, I’ll often turn to YouTube for ideas. One area that was difficult for him was remembering to raise his hand to speak. I found some catchy songs and videos on this topic—one of my favorites can be found here. I’ll also share T’s accomplishments with his team, which instills a sense of pride in them and sets a good tone for the meeting.    

Know when to be assertive and when to speak up 

Most of us know when to speak up, but for those of us that are newer to IEP meetings, here are some reminders: If you don’t understand something, say so. If you don’t agree with something, speak up. If a member of your child’s team says during the meeting that they will look into something and they don’t, follow up. Being assertive is not the same as being argumentative. Over the years, I’ve learned to be candid with my son’s team over a variety of issues: we’ve discussed adjusting his goals to ensure they are appropriately lofty, incorporated personal motivators to achieve more success and cut down on unwanted behavior, and tweaked prompting and prompt fading for increased independence in the classroom (Prompting is essentially a way to remind a child when to do something or teach a child how to do something correctly—for more information, see the helpful chart here.)

The pandemic has posed additional challenges. When it came time for all the kids in his class to resume full-time instruction, I knew it would be an adjustment for T. The first week, there was an incident at recess where T would not give up a toy. I was told by a member of his team “….to review expectations before school so he can hear this language.” T was being blamed for poor discipline and she was unable to see that this was an indication he needed additional support to navigate a newer, bigger recess environment. I spoke up and asked the team to have empathy for T and other students like him, rather than blame. After that conversation, supports were put in place for T to feel more comfortable—and included—at recess.  

Ask, “How can this be achieved?” 

Sometimes, I’ll receive the following feedback: T needs to follow directions better. T needs to respect people’s space. T needs to raise his hand and learn to wait his turn. My response: “Thanks for sharing this information with me. What are your ideas on how T can better learn to do this?” Challenges are going to be discussed, and this is an opportunity for the group to think about solutions together.

Get comfortable with changing course

When T’s school switched to virtual learning, I got a front row seat into his classroom. For writing assignments, I noticed that T was asked to tell the teacher what to write rather than write it himself on paper. My son has struggled with his writing for some time. There’s been progress but sticking with the traditional route of pencil to paper was beginning to affect topic writing, story development and his confidence. Having his teacher write for him created dependence, whereas the goal needed to be independence.

At his last IEP meeting, we decided it was time to try assistive technology. The SnapType app allows you to take a picture of the worksheet/assignment and type your answer rather than write it. He’ll still use pencil and paper, but adding this technology made sense. An added perk was that he also got more comfortable with the keyboard. 

Request progress reports

Mine gives me an understanding of his areas of progress and difficulty while spotting any trends in behavior. Determine a frequency that works; I requested a weekly report, received every Friday and broken down by subject, and his teacher agreed. Weekends are when I’m able better able to digest the information provided, with a clear head. For any parent, progress reports are an opportunity to identify roadblocks and brainstorm different ways to learning. I’ve also asked T’s team to provide activities I think he will enjoy over the weekend to reinforce concepts he may be struggling with at school. Often, I share what I am seeing at home, so the team is aware of his progress.

I can’t say I look forward to IEPs, but getting to OK has been incredible progress for me—and that is reason enough to celebrate. For those of you struggling with this, I hope you can get there too. 

This post is dedicated to A. Ross, OT and L. Nicosia, SLP. Thanks for going the extra mile. 

Photo: Etsy/APolkaDotShop

Monday, May 10, 2021

Elon Musk's autism announcement: Someday, it won't be a big deal to have a disability

Elon Musk's announcement on Saturday Night Live that he has Aspergers made headlines this weekend, not surprisingly. "I'm actually making history tonight as the first person with Asperger's to host SNL," the Tesla CEO said during the monologue, and the audience applauded. "Or at least the first to admit it. So I won't make a lot of eye contact with the cast tonight. But I'm pretty good at running 'human' in emulation mode."

There was immediate backlash on social media. People pointed out that Dan Aykroyd, one of SNL's original cast members, has spoken about his Asperger's diagnosis as a child. Others were concerned about use of the term Asperger's, which was eliminated as a diagnosis in 2013 and folded into the umbrella diagnosis of autism spectrum disorder. Some felt that Musk was perpetuating stereotypes. As Erin Ekins (@QueerlyAutistic) noted on Twitter, "The only 'awareness' that Elon Musk brings about autism is in regards to a certain presentation of autism (white, male, techy, awkward) which is literally the most over-saturated and represented presentation of autism across the media and society."

I understood the reactions. At the same time, I wondered if Musk's announcement could also be good for the autism community—one of the world’s most successful people publicly embracing autism might help soften the stigma. I wondered if that might have been what motivated Musk to speak up.

Most of all, I found myself wishing that it wasn't such a big deal. I've had the same reaction when people with Down syndrome, cerebral palsy or autism are in the news for being crowned prom king or queen or homecoming queen, for modeling in ad campaigns or appearing on magazine covers or for any achievement that typically wouldn't make headlines...except it did because a person with disabilities had achieved it. 

Last week, I got an email with the subject line "Disability isn't the opposite of ability." Yes, I thought: THIS.

I dream of the day when disability is perfectly ordinary and society truly understands that we are a world filled with people of all abilities—and that's a wonderful thing. 

I yearn for a time when people like my boy Max will not get second glances or glares or any of the extra attention that comes with having a disability.

I yearn for the day when people with disabilities will be such an accepted part of our society that they won't feel the need to come out. 

Friday, May 7, 2021

The Disability Blogger Weekend Linkup is good to go

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: Mom for the win, every single day

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, May 6, 2021

Mom for the win, every single day

I pulled off a major feat of repair last night. The garbage disposal had inexplicably stopped working and resetting the power button hadn't done the trick. Given that nobody in the house had noticed or cared that we no longer had a functioning garbage disposal, I had added it to my list of One Million Things To Do. But I had some dinner remains that I wanted to grind up, and I got it into my head that I was going to fix it. 

I pulled out the various bottles of cleaner beneath the sink, sat down on the floor and scoured  YouTube. I discovered that there was a good chance a thingie called an "inner flywheel" was jammed. And I had better not stick my hand down the garbage disposal! Which I had, of course, done More googling ensued to figure out what an "inner flywheel" was. Also, I needed an "Allen wrench" thingie to loosen up the "inner flywheel" thingie. 

Our junk drawer is either the most messiest part of our house or the most magical, depending on the day. I dug through it and unearthed a mini metal rod that had a bent end, kind of like the Allen wrench. It was in a plastic baggie with a stickie I'd written that said, "If Ben ever gets stuck inside the bathroom, use this to unlock the door." I shined a flashlight on the underside of the disposal, spotted a center hole and tried to move the rod inside it except it was too thin. So I headed back to the junk drawer and that's when I found a legit Allen wrench thingie, complete with the note I'd also so wisely scrawled on a stickie: "Garbage disposal wrench." 

I mean. Who in my family would ever think to actually save the wrench that came with the garbage disposal, actually store it in a bag, and actually put it in a place that made sense? 


Already that day, I had scored dozens of unrecognized, unacknowledged, unappreciated and unsung mom wins including:

• We ran out of Worcestershire sauce BUT I HAD AN EXTRA BOTTLE IN THE CABINET. Along with backup jars of other Important Condiments like Nutella.  
• Nobody could find a left soccer cleat UNTIL I DUG IT OUT OF THE CLOSET.
• There was a medical form for one of my children that was supposed to be dropped off at the doctor's office by Someone in My House because I had delegated it to him owing to my list of One Million Things To Do and I PESTERED THAT SOMEONE UNTIL HE DID IT.
• There was a clear sticky mess all over the floor in front of our fridge, likely apple juice, that nobody noticed—there were actual footprints in it and how can you step on a sticky mess and ignore it but anyhoo—AND I CLEANED IT ALL UP, INCLUDING THE SATELLITE STICKY SPOTS THAT HAD GOTTEN IN OTHER PARTS OF THE KITCHEN.
• Also, our glass table outside had turned a not-lovely shade of green because of the pollen—there was an actual outline where someone had put a book on it and how can you just put a book on that stuff and ignore it but anyhoo— I CLEANED AND SNEEZED AND CLEANED AND SNEEZED. 
• As the unofficial remote control first responder in our home, I RESCUED THE APPLE TV REMOTE FROM UNDER THE SOFA CUSHION. 
• I noticed one of the bathroom hand towels was full of mystery grime AND I PUT A NEW ONE IN, SPARING MY FAMILY FROM MYSTERY GRIME. 
• There was a whole pile of mismatched socks lying on a chest in Max's room that nobody wanted to deal with AND I MATCHED THEM ALL UP.
• Ben is obsessed with the show Miraculous Ladybug and unfortunately the dolls break within about five minutes of getting them and I know this because we are on our fifth set and Cat Noir's legs fell off and  I CLEVERLY FIGURED OUT HOW TO REATTACH THEM WITH RUBBER BANDS. 
• While I was in the backyard planting grass seed for the spots that had gotten destroyed by outdoor toys and playsets, I noticed a tall branch randomly sticking out from a rose brush AND I WENT TO THE GARAGE AND GRABBED OUR CUTTING SHEARS AND CUT THE BRANCH DOWN, THEREBY RESTORING FENG SHUI TO OUR YARD AND ENSURING THAT EVERYONE WOULD HAVE A ZEN SPRING, AND I EVEN WIPED DOWN THE CUTTING SHEARS SO THEY WOULD NOT RUST. Amazing, amIright?
• In a trifecta of household negligence, three bathrooms were completely out of t.p. AND I REPLACED ALL THE T.P. (You may have read about my talent for noticing we are out of t.p. several years ago here.)
• Ben's preschool had asked for photos of him over the years to share for his graduation ceremony and I DUG THROUGH THREE YEARS OF PHOTOS OF BEN AND FOUND GREAT ONES.
• The lovely pink begonias I put into the planter on our front porch that nobody waters except for me were wilting AND I REMEMBERED TO DO IT AND SO WHAT IF IT WAS 1:05 A.M. CAUSE I'M PRETTY SURE NOBODY SAW ME IN MY NIGHTGOWN WITH A WATERING CAN ON OUR FRONT PORCH.

Mom win win win win win win win win win win win win win etc.

So many mom wins every single day, every single month, every single week, every single year. And there I was with my Allen wrench thingie, scoring yet another. I lay down on the floor, shined the flashlight on the disposal and inserted the wrench. This time it caught, and after wiggling it back and forth a few times I felt something come unstuck. When I jumped up,  turned on the garbage disposal and heard that sweet whirrrrrrr, I said "YEAH!" out loud to the empty kitchen.

As I was putting the bottles away beneath the sink, Dave walked in. And I just had to give credit where it was due. 

"Honey, I fixed the garbage disposal!" I proclaimed. 

"You did? Wow!" he said with not as much enthusiasm and appreciation as I felt I deserved. 

I pressed on: "Would you believe I actually saved the wrench it came?!"  

"Wow!" he said again. "Amazing!" And then he went off in search of a seltzer. 

And I realized that in his mind, I had simply fixed the garbage disposal and in my mind, fixing the garbage disposal was the equivalent of sending astronauts to outer space because that's pretty much the level of credit I deserve for everything I do. 

So he got his seltzer and I put away the bottles under the sink and tucked that Allen wrench thingie into the little plastic bag and socked it away in the junk drawer, where it will remain until the next garbage disposal mom win. 

The end.*

*Not really.

Wednesday, May 5, 2021

Oh, yes, our children are fighters

We found out this weekend that a young man with medical complexities who we've known for years  passed away on Friday. Josh's parents, Erica and Steven, had filled his life with family fun, activities, Friendship Circle events, trips to Disney World and all the love and devotion. 

During the virtual funeral service, Steven asked people to picture what a fighter would look like. He noted that he imagined we might have been thinking of someone who likes to shout and argue. But, no: Josh was a fighter. He had endured many, many surgeries in his 21 years, persevering with spirit and tenacity.

I've been thinking about Josh a lot these last few days, once when Max was climbing up our front porch stairs. He was grasping the hand rail with all his might, and struggling to find his footing on that first step. He'd put his weight down on it, get wobbly, then step back. Start, then step back. Start, then step back. Just as I was about to lend a hand, he lifted himself onto the step and motored on up. 

Obviously, people with disabilities navigate life the best that they can—they aren't heroic or inspirational for doing that. But it takes a certain inner force to constantly surmount obstacles, be they physical ones or 
the biases people have. To endure surgery after surgery and medical intervention after medical intervention, as Josh did. To maintain your sense of humor, as Josh did. I have a vivid memory of him from years ago. I'd taken Max to an event at a museum, and by the time we headed out, Max was grouchy. We found Josh waiting outside with his mother, his dad had gone to get the car. Max stood by Josh's wheelchair and I don't remember exactly what went on between the two of them but Max cracked up. In the car he said, "Josh is funny!"  

Our children are fighters isn't something that parents of children with disabilities say to reassure ourselves about the challenges they face. We know it. We see it. We live it with them. Our children have shown us strengths that we ourselves have never had and superpowers we never could have imagined. They are heavyweight champions of tenacity. They are everyday warriors. 

Rest in peace and power, Josh. Your strength and spirit will forever stay with us. 

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