Parents of children with disabilities love them unconditionally: Why don't people get it?

It happened again this weekend, when Max and Dave were having ice-cream outside a store. Max eats well enough on his own but there was no table available and Max can't hold a cup and eat at the same time, so Dave ended up spooning soft-serve into his mouth. A man passing by on the street stopped and said to Dave, "Bless you." He proceeded to explain that he had two daughters, and that he was so impressed by what Dave was doing. Dave said he had tears in his eyes. 

"He's a perfectly happy person," Dave said. "You can talk with him, if he wants to!" Max introduced himself as Fireman Max. They exchanged some pleasantries and the man kept walking. I'll bet he would have been seriously stunned if Dave and Max started suddenly karate-chopping each other, as they like to do. 

These incidents are disturbing, both because Max may soon well understand that he is being flat-out pitied and because it's painful when people expose their dated perceptions of people with disabilities. Parents of children and teens disabilities may definitely have a lot more needs to tend to then other parents do. I understand that it may be startling to see a father feeding a young man. But this is what we parents do: We nurture, enable and generally help out children of all ages and all abilities. 

These are our children.

We are their parents.  

This kind of thinking further alienates our children from the rest of society, the age-old concept that children with disabilities aren't as lovable as others because they are "damaged" or "defective"—and that the parents who care for them are therefore super-parents and inspirations. 

It seeps into culture in many ways. Over the weekend, I watched Trump nominate Amy Coney Barrett to be a Supreme Court justice. As he discussed her children, he noted that her "incredible bond" with her youngest—who has Down syndrome—"is a true inspiration." But why is her bond with him any more admirable than her connection with her other children? Just how did Trump assess that their bond is exceptional? Again, it's that dated and wholly untrue perception that a child with disabilities is less desirable, and therefore a parent's devotion to him is awe-inspiring. 

For sure, there are days when I am wowed by what Dave and I accomplish as parents, period. Dave is an incredibly devoted father to all three of our children. And he does his best to take care of all of them, in the ways that each one of them needs. Sometimes our efforts for Max are especially noticeable to others. Sometimes, they are not visible. Nobody would ever know, for instance, that Dave can regularly be found sitting on our couch every evening with a tired Ben. "Rub my feet!" Ben will command, as he's done since he was two, and Dave obliges as Ben sucks his thumb and chills out. 

We are parents. These are the children we love and care for because they are our children and teens, not because we are saints. To call us inspirations or bless us for doing what we do demeans our children for who they: children and teens, as worthy of respect, admiration and love as any others. 

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All those years of therapy and it's come to this

I started looking into therapy before Max had left the NICU. "Get him as much therapy as you can," the seasoned pediatric neurologist had told us, and we did—it was all we had. I reached out to an Early Intervention supervisor, and Max started getting physical therapy right around when he turned a month old. By the time he was one, he had 10 to 12 sessions of therapy a week including private PT, OT, speech, vision therapy, aquatic therapy, craniosacral therapy and, eventually, hippotherapy (horseback riding) and hyperbaric oxygen treatment, too.

There was nothing we weren't willing to try, as long as it wouldn't pose any harm. 

Max was a pretty cheerful kid who liked hanging out with people and he went along with the manipulation of his fingers, hands, limbs and torso just fine. Horseback riding, he did not love but eventually he got into it. Therapy became second nature to him, a normal part of his routine.  

We were lucky to find amazing therapists, though good and reliable speech pros were the hardest to come by. We were also lucky to find ones willing to come to our house, because I was working full-time. For several years, on Thursday nights, Dave drove Max 40 minutes away to see the most amazing physical therapist who would do things like balance Max on his outstretched hands.  

Time passed by. The days were slow, the years were fast. Some therapists stayed on for a long time. Some came and went, and each time I scrambled to find someone as good as before. When Max was 14 an OT told me she no longer had anything she could offer him, which was a shocker. I'd heard it before: I once had a standoff with a school speech therapist who wanted to quit working on Max's articulation and focus only on app-enabled communication, because she didn't think his speech would progress. It has. Doctors always tell you that therapy is most important when children are young and in the physical and cognitive formative stages, but I am here to say that our children never run out of potential for progress and acing new things, big or small. (See: Max shows us how to swim.)

Max's last OT moved away early in 2020, and finding a replacement has gotten paused by the pandemic. It's proven impossible to find a physical therapist to come to our home, and so he has only had that at school for the last several years. Our speech therapist has been with us since Max was about three years old, and we have a standing Saturday morning session that Max looks forward to—so much so that he insisted we do it during our recent RV trip.

We were warned, when Max went into high school, that he would get considerable less therapy than before. That's been true, but I pushed to get him an extra PT session there. He has that, speech and OT two times a week each from school, plus one private speech session of private music therapy. Currently they're all being done virtually.

You know how some people dream of winning the lottery and getting a giant new house, a yacht, a personal chef? Me, I'd hire a coordinator to manage all of the therapies. 

Max has been a champ about doing therapy online. He'll hold onto a chair and crouch to do knee bends. He practices folding up paper with the school OT. He enunciates words with his speech therapist and even holds a chewy tube in his mouth and bites down on it for oral-motor exercises. 

Cut to last Friday. Our sitter was over as I had to catch up on work. Around 1:15, I texted from upstairs to remind her that Max had a make-up session with his school PT. 

"No, she cancelled," she wrote back. "We're going to the park."

I emailed the PT to reschedule. That's when she informed me that Max had emailed her to cancel the session. Wait, what?!

Oh, yes. She sent a screen shot of his email. Evidently, he had reached out to her at 11 a.m. to say—spelled exactly as he wrote it—"I'm going to Cancel today I'm going to the park after school."

She wrote back telling him to have a great day and weekend and that she'd see him next week, which is the email the sitter saw and mistakenly assumed the PT was the one who cancelled.

I was curious, and I checked Max's emails. (Bad, bad snooping Mom!) Evidently, after he sent his first email he'd had a pang of guilt and a minute later he messaged "I'm sorry." And then, after she replied, he wrote back to say: "OK thank you you are the best."  

We had a little chat. Max explained that he didn't want to have therapies on Fridays, and I totally got that—who doesn't want a day off? I told him that once in a while, it might have to happen if a therapist needed to miss a session on another day, and he grudgingly agreed that would be OK. 

So there you go: Max took it upon himself to type a message to his physical therapist and cancel a therapy session because he wanted to go to the park instead. Then he charmingly thanked her. Then he advocated for himself for having a day off. 

And that, my friends, is what I call PROGRESS.

Giving your mom a haircut makes you both really happy

Back in April, when I was panic-buying stuff, I got a professional haircut kit off Amazon because I figured we wouldn't be venturing to barber shops or salons anytime soon. I never did use it on the boys, who looked like werewolves until my stepfather-in-law took pity and gave them cuts. Sabrina and I held out and then my stylist opened her own salon and cut our hair one evening before she'd officially opened, and she's since let me in early in the morning for a dye job. Dave has had cuts outdoors at places. 

When Ben and I headed to visit my Mom yesterday, I brought the fancy scissors along. I was a little nervous about using them, but I put on my big-girl panties and went to it. I spread out a garbage bag on the floor in the little sitting area near the kitchen, put a chair on it and helped my mom settle down. She's moving more slowly now; I immediately noticed that she had taken to shuffling instead of walking, and while she's as heartily cheerful as ever, her body is frail. She's always cold, so she kept on the flannel jacket she had over her housedress and I tucked a towel around her neck. 

My mom has had short hair her entire life—pixie-like, a la Audrey Hepburn. Now, it was almost down to her shoulders. I had absolutely no idea what I was doing but I wet a comb, pulled it through her hair and started gently snipping away as Ben hung on the sofa in the other room and played a video game. Mom closed her eyes and sat there peacefully, a good thing because I'm pretty sure I look petrified. 

"How much are you going to charge me?" Mom joked. I told her the cut was on the house but if she felt like tipping, I would accept pretzels or cookies (she is a snack monster). 

"Actually, it's good for me to practice on you, Mommy," I said. "Who knows, maybe this can be my backup career!" 

"Ellen, you could be a hairstylist!" she said. "You've always done anything you put your mind to!"

I mean, who in your life says things like that except your mom? 

As nervous as I was about getting the cut right and not nipping her ears, it felt absolutely amazing to be doing something for my mother, who is the most selfless person I know. She apologized that I had come to her house only to do work, and I had to keep reassuring her it was my pleasure. She asked several times if I needed any groceries: "Do you need applesauce? Do you want to take home a jar of peanut butter?" I have a lot of guilt about not being there for my mom as much as I should be—my sister is the one who visits her weekly—and while giving her a haircut did not absolve me, I was glad I could do it. 

We talked about politics and the pandemic and how the kids were doing while I did my best to shape her hair and her wispy-fine hair fell to the floor. Haircuts always look easy-breezy from the chair but figuring out the angles when you have a pair of scissors in hand, not so much. I was sweating behind my mask. 

I'd swept my mom's hair to the side for the cut. When I thought I was done, I told her she could just keep it tucked to the side. "I usually have bangs," she noted. I couldn't escape the bangs. So I chewed my lip and went for it. They were actually not as nerve-wracking as cutting around her ears had been. 

I'd sum up my handiwork as "not half bad." I grabbed a hand mirror from her bedroom for the big reveal. Mom took one look and gushed, "Ohhhhhh, Ellen, it looks beautiful! This is one of the best haircuts I've ever had!" Because: Mom. I felt a rush of happiness. 

Then she said, "I don't think I'll ever have to go to the salon again!" 

Tears sprang to my eyes, but I was crouched on the floor cleaning up so my mom couldn't see. She is up there in years, and I'm at the stage where when I call and her phone goes to voicemail, my heart catches. I pray to God that she is able to get to the salon again someday.

Mom's flannel jacket had hair all over it, so I grabbed an old roll of packing tape from drawer, wound a pice around my hand and used it to clear off her jacket. My dad, who instilled practicality in me, would have appreciated that.

Then she was urging me to get home, to avoid Sunday afternoon traffic. We walked to the stairs, Ben started trotting down and I turned up to look at my mom, waving so lovingly at me with her brand-new bangs.

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Masks are the best tool we've got, and how can Trump or anyone argue with that?

I literally almost fell off my seat yesterday when I read it. The director of the U.S. Centers for Disease Control, Robert Redfield, M.D., testified during a Senate hearing that masks are "the most important, powerful public health tool we have" to combat the pandemic. "I might even go so far as to say that this face mask is more guaranteed to protect me against Covid than when I take a Covid vaccine." Why? Vaccines are not always 100% effective, he noted: "If I don't get an immune response, the vaccine is not going to protect me. This face mask will." 

Hours later, our president was declaring the director of the CDC wrong. He and Dr. Redfield had spoken, a (surely mask-less) Trump told the press, and "I said, 'What did you mean by that? I think he just made a mistake...I think he misunderstood the question." 

Oh, no. Our country's top public health official could not have been clearer: Masks. Are. Everything. 

We are nine months into the pandemic, 196,000 deaths in this country into the pandemic, 29.7 million cases worldwide into the pandemic. We are close to a million deaths around the world into the pandemic. And it is mind-boggling that anyone could question the fact that masks are our most potent weapon in fighting Covid-19, along with hand-washing and social distancing.  

I see mask debates raging on in my local mom's group, and it is troubling. The other day, someone mentioned a large group of teens hanging out in a parking lot in town who were not wearing masks or social distancing. The comments that followed were mostly of the "Yes, they should be wearing masks" variety. But not all were. 

One mom wondered if maybe we should drop the expectation for kids and teenagers to wear masks because, as she noted, "it doesn't seem to make a difference in terms of social spread, at least in our area." WHAT?! Had she not heard about the studies? Had she not seen the videos that showed just how effective masks are at containing germs? 

And then, there was the mom who said "I really wish the mask policing would stop." WHAAAAT?! When a bunch of us pointed out that caring about preventing the spread of the coronavirus does not make you the police, she deleted her comment and quit the group. Or maybe she got booted out?

Wearing a mask isn't just a health issue or a moral one. For some of us, it's also very personal. Max is at risk for complications from the coronavirus because fever triggers seizures. We've been told his breathing wouldn't be more impacted by the virus because of the cerebral palsy, but so much is unknown. Mask-less or half-masked people—the ones who wear them beneath their noses—put us and therefore him in danger. Period. Mask-less or half-masked people put all of society in danger. Period.

This half-mask thing, aka going "nose commando," is an ongoing problem. If it's someone I have to interact with, like the guy who pierced Sabrina's ears, I'll say something. The other night, Dave and I headed to a terrace restaurant at a local golf course; we'd heard the food was good. As a waiter lead us to our table, I noticed the bartender was wearing a mask below his nose. We sat down, looked at the menu and Dave considered ordering wine. "No!" I said, a little anxiously. "You do not want to order anything from that bartender." Then I decided that I wasn't at all comfortable eating at a place that let their bartender wear a mask that way. Dave agreed, and we left. Later, I left a voicemail for the manager about it.

That half-masked bartender and the many others like him, those teens in the parking lot not wearing masks and the multitude of others like them, the mothers who publicly question the usage of masks' efficacy and the many others like them: They are all going to prolong this pandemic. 

If people were asked whether they'd jump into a pool to save a drowning person, they'd say yes. But if you ask people whether they'd wear a mask to save someone from Covid-19, you might get an earful of protests or denials. And that's the problem—too many people refuse to accept that masks are life savers. 

Then there are those mask-less people who may or may not be named Donald Trump who want to make like everything is going to be OK and la-la-la-la not listening not listening la-la-la-la, which is actually going to keep everything not OK.

Trump claimed Dr. Redfield made a mistake when he said masks are the ultimate protection from the coronavirus. But make no mistake: They are. 

I'll take any bit of normal we can get

Normal, as I've learned from raising Max, is an overrated word. Ditto for "typical." We all know our kids are better than that! Unique, that's what they are, with their own special capabilities, charms and ways of doing stuff. And yet, normal life is what I've been aching for, and I got a burst of it when I picked up Ben at preschool yesterday for the first time since the pandemic began.

He's the only one of our children actually going to school, although he's doing the outdoor-only program. It had seemed fine, other than the fact that we learned on the weekend the plan was to take all the kids indoors as a group for potty trips. A few emails to the director later (I wasn't the only parent concerned) and I found out they'd made plans to keep kids outside who don't need a bathroom break. 

Nothing felt normal about Max or Sabrina's first day since they didn't go back to school, other than the requisite photos on our front porch. We did the same with Ben.  

Laying out a cute first-day-of-school outfit the night before: normal.

Figuring out which mask he should wear: a new normal that still doesn't feel normal.

The hustle to get him to eat breakfast: normal.

Having to pack a snack and plastic bottle of water in a brown paper bag because kids aren't allowed to bring backpacks or water bottles: not normal. 

The fact that we didn't notice Ben was wearing his sneakers on the wrong foot till right before we left: normal!

We were all in good cheer on the 10-minute drive to the school. I filled out the health questionnaire on the app. We pulled into the familiar driveway, as we've done hundreds of times. 

Everything looked the same. 

And yet.

Teachers were all in masks; one leaned into the car to take Ben's temperature. All the kids were in masks, their bright eyes peering out , some excitedly and some nervously. I had mine on when I got out of the car to unbuckle him, and we did a mask-to-mask kiss.

Not. Normal. So disconcertingly NOT NORMAL. 

I hadn't been back to the school since it had abruptly shut down that second week in March. I was truly grateful Ben would get to hang with friends. But I kept thinking, sadly, look how much our lives have changed. 

I don't have a lot of time to wallow these days. I don't want to wallow, because it's too easy to get stuck in that muck. Every once in a while, though, it hits me. What kind of normal is this? When will the old normal return? Will it ever feel like the old normal again? 

And so, I welcome anything and everything that's from our old normal. Hanging at Dave's parents house. Floortime with Ben. Early morning chats with the guy who cuts our lawn. Ordering in a pizza on Sunday night. 

I went back home after drop-off and worked for a few hours, then Dave and I drove to pick Ben up. And it was absolutely amazing.

Ben ran happily to me, as he has since the day I first picked him up there.

Normal.

He was clutching artwork he'd made.

Normal. 

"Mommy, a boy had gummy bear juice! I want some!" he announced.

Which technically wasn't a normal statement but listening to his chatter about snack-time and the friends in his class and playing was so normal. And he gnawed on the baby carrots I'd brought, because I know he's hungry after school and that is my normal sneaky way to get veggies into him before lunch. And we got home and walked hand-in-hand to our front door.

And it was all this mom could hope for these days: Just a little bit of normal. 

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The karate teen

Last night, Dave and I settled down to watch Cobra Kai, a Netflix show based on The Karate Kid. Dave wanted me to see it because he's gotten Max into it—and it's inspired Max to bust out karate moves.

"Kick!" Dave will say, and Max gives a kick. "Do Cobra Kai!" Dave said, code for "throw a punch," and Max does. And then for good measure Max will give a big "hi-YAH!" and he punches and kicks at the same time with a huge grin on his face. 

This is all kinds of cool. When Max was a little guy, we tried to take him for karate lessons—we figured it would be a very fun kind of physical therapy—only he ran wailing out of the place. And here he was, karate-ing all over the place. We are going to have to figure out a way to get him lessons. Come to think of it, I wouldn't mind some, either: HI-YAH! TAKE THAT, CORONAVIRUS!!!

Max actually has a lot of force in his arms and legs—it's the cerebral palsy spasticity, and it could work in his favor for karate. Maybe it would help him up his coordination game, too, although boyfriend does land a mean punch.

I'm going to start with YouTube videos, I found a few good beginner ones. It would be quite awesome if Max got obsessed with them, because he could really use a new video obsession (fire trucks with wailing sirens OMGeeeeeeeee). Maybe we'll find a virtual class. Maybe, just maybe, I can get someone to come to our backyard for lessons. In the next couple of weeks, I have a teen coming to give Ben a softball lesson and a hair stylist coming to give my mom a trim. Backyard karate seems entirely possible and as I well know from raising Max, you'd be surprised what people say yes to if you just ask. 

File under: We are onto you, buddy!

For years, we've known that Max acts more independently when he is not around us, often in terms of eating. He is all too glad to let Dave lend him a hand. Until recently, we thought we had to cut up food for him. This, evidently, is not entirely true.

Sunday, we had a barbecue at my sister-in-law's. Dave and I had to head home—the boys wanted to sleep over, so we needed clothes for them and we also wanted to take Sabrina out for a special dinner since we rarely have alone time with her. We rarely leave Max alone, even with family, but it was just for a couple of hours and we figured we'd be back before the dinner BBQ. Except dinner started early, I found out. 

Text to sister-in-law: What did he have for dinner? Who cut up his food? 

Emily: He was amazing he fed himself a burger. He did really well. He cut it up himself with his fork. 

Me to Dave: "MAX ATE BY HIMSELF AND HE CUT UP HIS BURGER WITH A FORK!"

I tried to picture it, and I could see it—Max clenching the fork and carving pieces out of the burger. He holds onto utensils tightly because he doesn't have the dexterity to hold them with less tension, and that force would have come in handy for cutting. 

Text to sister-in-law: He's never cut up anything for himself before. That is incredible.

Emily: Wow he was like a pro. He also roasted up his own marshmallows.

Me to Dave: "HE ROASTED HIS OWN MARSHMALLOWS!!!"

We've seen Max holding his own stick over a firepit before—but the fact that he was doing it without us was wondrous. And never in the history of Max had he cut up his food, spear it and eat it. We've always chopped, sliced and diced for him out of concern that Max, whose chewing is impacted by his cerebral palsy, could choke on a too-large piece. But Max has gotten pretty adept at knowing how much is too much—I've seen it when he's eating.  

It's easier for Max to let us keep on helping him. I get that. Long ago, we figured out that he doesn't often let on when he's achieved a skill—like that day I dropped by his classroom when he was a kid and was astounded to see him using a spoon, which he hadn't been doing at him. And now, we once again have proof of his capabilities, which can and will be used against him! Er, to help him! 

Cutting up his food was yet another milestone in Max's evolution. It was a reminder that we absolutely need to force ourselves to step back and let Max help himself with eating. And it was just beyond heartening to know that this is yet another thing Max can DIY. 

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Virtual reality: Making the most of remote learning

School starts tomorrow, and Max will once again be seated at our dining room table and staring at his iPad. He is doing virtual schooling for the indefinite future. Every family has to make the choice that feels right to them, and that's what felt right to us even if we are still grappling with the realities of what it will mean. 

For Max, school has always been his social life, and he is one very social person. I mourn the loss of in-person interaction with his peers. Max is also disappointed not to return to school, but at the same time understands. He'll get to do more mingling with friends in after-school clubs (they'll all be virtual).  I know he'll get into the spirit of Zoom-ing, and he'll get to do more mingling in after-school clubs (they'll all be virtual). Sabrina will also be learning at home. Ben is going to an outdoors-only preschool for a couple of months. 

This year, Max will be in a program called Work Experience Cluster (WEC). In ordinary times, it would have enabled him to sample work opportunities in the community. Instead, he will be doing Zooms to learn related lessons and life skills.  

Yesterday, I spoke with Max's new teacher. Last spring, all students in the school were on Zoom, creating a communal experience that truly worked for Max. This year, four students in his class will be doing virtual learning and six will physically be in school, a hybrid experience that will have to work itself out. (The school day will go from 8:45 am. to 12:45 p.m., no lunch break). Students on Zoom will not be able to see the students sitting in the class for privacy reasons, the school has decided, although they will see the other students on Zoom.

As with everything involved with raising a child with disabilities, you have to make your child's needs known. I'd mentioned to the principal at some point that it was important for Max to have a really dynamic teacher, as he did last year—it was so important for Zoom-ing. I mentioned to the teacher that Max really likes to engage with other people and it's equally important for him to be engaged, and she reassured me that she would speak to him and make sure his voice was heard. She noted that he could also type comments, and I'm sure he's going to take her up on that. I so feel for her and other teachers, who already had a lot to juggle even before the pandemic began. 

I asked if there had been any discussion about continuing work experiences virtually, and she yet hadn't heard about that end of things. Obviously, some businesses right now are just struggling to stay afloat. But there could be some that would be willing to do virtual presentations.  There might be employees working from home who could do tutorials—say, show students how they use a shredder. Perhaps an employee at a supermarket could do some sort of presentation and virtual shopping in which students would add up purchases.

Of course, right now the focus is on getting the school year off to a safe (and sane!) start. But with some creative vision and planning, virtual employment opportunities could definitely happen. I hung up the phone and emailed the principal and vice principal some thoughts. I noted that the school had done an admirable job transitioning to virtual programming last spring, and I had faith that virtual WEC experiences could happen through a meeting of the minds. Happily, he responded that the school has been thinking of ways to incorporate similar ideas into the school day, and once things had settled down they planned to put plans into place. That was reassuring to hear, and I mentioned that other parents would find it reassuring to know as well. The more information we have, the better.  

A year ago, if you had told me that my children would be doing virtual schooling, my head would have exploded. It often still explodes, although for different reasons, but now I know that virtual schooling can work. Not for every single child, and not all of the time. Yet it's been a good thing for Max. And it could be a good thing for his future in the work world, too.