Wearing a Mask Isn't a Personal Decision

If you strongly believe that it's your right to choose whether to wear a mask during the coronavirus pandemic, then you might not want to read this. On the other hand, it might a good idea if you could read it with an open mind to understand our perspective.

Teddy cannot wear a mask. He simply does not comprehend that it needs to stay on his face and removes it the same way he does every pair of sunglasses or hat that we place on his head. It might stay on for a period of time, anywhere from literally a second to 30 or more minutes depending on the hat and whether it has a string for him to chew on. See, Teddy has extreme sensory needs that include the constant need to chew on something, so something covering his mouth is only going to end up in his mouth. And a potentially contaminated mask does not belong in his mouth. Or shoved onto my head, which is also realistic because he likes to place the items he removes on other people.

Teddy also took an ambulance ride to the ER due to strep throat. He had another ambulance ride and ICU stay for an ear infection and stomach bug. Any illness, particularly one that causes a fever, can trigger seizures. And sometimes, those damn seizures won't stop. If strep throat sends him to the hospital, a reasonable person can understand why we're extremely concerned about the risk COVID poses to him. We like to pretend we don't have a medically fragile child, but the reality is that he fits that label.

So where does that leave us? At home.

Pretty much, that's the only safe place for Teddy to play, which means that's the only safe place for AJ to play. We even have to come inside when our neighbors are playing outside when Teddy doesn't understand we cannot play with or near them. We've made a few trips to parks when no one else is there, with the plan to leave as soon as someone else arrives, hand sanitizer on hand for immediately afterward and 1:1 supervision to keep Teddy's mouth off everything. We've done bike rides and runs, but only in places where there's plenty of room to distance and/or limited people.

Teddy hasn't been in a store in 4 months. Before the pandemic, he was routinely in stores at least once a week because we took him along to run errands because he loves people (and trips to stores greatly helped improve his moods when he was crabby and driving us nuts). What would it take for Teddy to be able to go into the store again? Everyone who can wear a mask to wear a mask.

You see, we understand that for masks to be fully effective, both people in a situation need to wear them. Only one person wearing a mask doesn't offer full protection. But, the best we can hope for with Teddy is partial protection, and unfortunately we have to settle for that. Because we can't isolate him at home. He needs multiple therapies to help work on the skills we take for granted: communicating, dressing ourselves, walking and so much more. He needs to go to appointments for adaptive equipment like AFOs, braces that help him be so much steadier on his feet and prevent him from snapping his ankles with his bendiness.

This graphic shared by Philadelphia Public Health sums it up pretty darn well.

The issue of a mask comes to the forefront at these appointments. At his therapy appointments, his therapists all wear masks, most often the respirator masks, and sometimes eye protection. His physical therapist informed me today that she fields a lot of questions from even her family on why she wears a mask everywhere. She said I do it to protect my kids. I know the population I work with is vulnerable. This came up because I warned her that the person who does Teddy's braces doesn't believe in wearing masks, just as a heads up in case she refers other medically fragile families there.

When we went in June for the first fitting appointment, I was surprised and uncomfortable that no one was wearing masks. For the second appointment, Dave called to request the person who worked directly with Teddy wear a mask. He did, but he also shared his thoughts on the virus being similar to the flu and how masks aren't necessary with our childcare provider. We made the same request for Teddy's appointment yesterday, and again our childcare provider took Teddy to the appointment. She and AJ wore masks ... and earned another earful. This time it was questions about where was Teddy's mask and why Teddy wasn't wearing a mask. She simply said Teddy cannot wear one due to sensory issues, which this person should know because he's worked with Teddy for 6 years. She shouldn't have to explain or defend why we're requesting a medical professional to wear a mask when interacting with our son.

Wearing a mask isn't your personal decision, any more than the decision to drive intoxicated is your personal decision. Personal decisions are things that impact you: whether you get a tattoo, dye your hair lime green, eat ice cream for dinner or even wear your seatbelt. They impact you and your health, so they still impact others who care about you if you make negative choices that lead to becoming ill, injured or deceased. But they don't pose the risk to others and they don't take away the ability of others to be in our community.

It's been said by so many in different ways. Wearing a mask isn't about you, although it certainly keeps you safer. Wearing a mask protects others, especially those like Teddy who have the double burden of medical fragility and the inability to physically wear a mask.

I'm not asking for sympathy for our situation. I'm asking for a bit of empathy, which means you'll wear a mask in public. And it means I won't have to make special requests for you to wear a mask to interact with my son and then get the fifth degree.

Field Trip Fun

Field trips are a mixed bag of emotions for me.

I love to see Teddy included and have the opportunity for fun learning, just like any other child. I tend to resent, though, that one of us as parents have to take off work to accompany him on his field trips because there's not adequate staff to have someone accompany him. (I get that's an issue I should be able to resolve through the school, and I will address it through his IEP once we're done with some additional testing for him next month.)

Teddy made friends with the bus driver, who let him open/shut the doors.

I love to see his classmates who interact wonderfully with him, from the girl who holds his hand and pats his arm when he's upset that he has to wait and not freely explore everything to the little boy who sat next to him digging for dinosaur bones praising his digging and taking turns with Teddy. I don't like to hear that Teddy's not in the first grade classroom that often (per a kid's perception, of course) because he needs a staff to support him to be integrated. I know it's early in the year, and I know there's kids in any class who are a handful for the teacher to manage and that it's tough to add Teddy to the mix. But he learns so much from others, and the gaps between him and his peers will only widen each year. Now is the time to invest in the staffing to have him spend as much time as possible mainstream. (Clearly, you can see what's on my mind. Again, I have plans to address this properly through the school rather than just complain about it here.)

Bookworm Gardens in Sheboygan is definitely worth a visit with lots to explore. 

I love the kids who say that Teddy's their friend. I both love and hate the questions they ask because they're curious about Teddy. I will always answer any questions to help others understand Teddy because I'm Teddy's voice. It still hurts most times I answer why Teddy can't talk like others and how he can communicate instead. But there are now several kids in his class who know that clapping is how Teddy says, "I want." And there's also kids in his class who probably have ideas on other signs they can teach him. That's all wonderful, but it still hurts to spend a whole day watching Teddy and his peers who aren't his peers ... and to realize that his intentional classroom's wonderful circus of a gym class is where his peers are. Field trips are really only hard because I haven't fully mastered the art, skill or whatever you want to call it of acceptance.

Like I said, it's a mixed bag of emotions. 

Just Imagine

Imagine, if you can, going through an entire day without being able to say a word. You can communicate anything you want, as long as you do it through staring at objects, physically directing others to do what is desired, clapping to show that you want something and pointing at objects.

How would you fare?

That's the thought that popped into my mind this weekend, and it's been lingering. I'd probably end up in tears within the first hour of the day. I'd likely give up attempting any communication, at least with certain people, once I'd exhausted their patience with me and my patience with them.

I can't imagine honestly making it a single day, even if I took out the challenge of a work day. Yet this is each and every day for Teddy. He handles what would drive me over the edge with remarkable grace, patience and forgiveness. Yes, those aren't often words I use with Teddy, but when I think of the challenges in expressing basic needs, much less wants, dreams and desires, he exhibits all those qualities.

At times, I lament how challenging it is for us as parents. Life is a constant game of charades, and we don't even know the category most of the time. But no matter the frustration we feel, Teddy by far has the shorter end of the stick.

The other week he was eating a grilled cheese sandwich and got up from the table and stood at the counter next to the fridge. I was about to redirect him to go sit down and finish his food when it suddenly clicked that he probably wanted another grilled cheese sandwich. So we showed him AJ's sandwich and asked if he wanted more. He clapped and pointed at the sandwich, which is a clear request. So we made him another grilled cheese and celebrated the victory of understanding his desire for seconds. I felt so proud of that minor victory, yet how many other moments have I completely missed?

It's amazing how much he can communicate with his limited means, and we'll continue to work with his talker and with sign language to expand his abilities. It takes time for others to get to know his methods, yet sometimes there's no doubt what Teddy wants you to do. Other things, like a second grilled cheese, require us to pay much closer attention to all the little clues. It's exhausting for all of us, yet exhilarating when we make progress in either communication or understanding.

Trust Me, We're Not All That Special

Our family gets judged. At times, it's by others in public who give me the side eye as I fireman carry Teddy away from where he wants to be or have him flop down on the ground refusing to move. Other times, though, it's by friends or family who seem to think we're super parents when, in reality, we're not.

We're just like other parents. We are excited for our children's accomplishments, whether that's AJ learning multiplication in first grade or Teddy mastering the art of stacking canned goods. (Stacking has been a really hard skill for him.) We love to hear our children laugh and giggle and take joy in their joy, whether that's AJ's hysterical laughter during Home Alone movies or Teddy's excitement to have vacuum cleaners. We get frustrated when they don't listen, like my voice somehow being in an octave that AJ magically cannot hear or Teddy completing disregarding our requests at least 75 percent of the time.

When people say how remarkable we are as parents, I appreciate the kind words but know the reality is that we get frustrated more often than we should. There are moments where my patience is completely exhausted by Teddy's determination to do exactly what he shouldn't ... lots of them, honestly. But then there are the mornings where I go into his room, roll around with him and snuggle him with kisses and laughter.

I appreciate the thought, although I don't think it's true.

Basically, we're human, which means we're nowhere near perfect. But all those prayers from our family and friends go a long way in giving us the grace to keep trying and extend my patience.

Just a Little Different

Tonight we read "Just A Little Different" by Gina and Mercer Mayer. I remember reading the Little Critter books as a child, and this is not my favorite in the series as an adult. (As a child, my favorite was probably the "Just My Dad and Me" one that my brother hated after I was born.) It's a story about a critter named Zach who is half turtle and half rabbit who gets left out because he's a little different.

One critter tries to include him, but the other critters aren't welcoming. The wise mom said, "Being different is good. Our differences make us special." So the one critter continues being his friend, finds common interests and eventually the other critters warm up to Zack.

Life lessons in a book about critters.

The lessons from the story could apply to anything that makes people be viewed and treated differently, whether it's race, gender, disability or any other factor. The moral is simply that differences aren't bad and that we can find common ground with others who may seem different.

My favorite part while reading the story tonight was when I asked AJ what he would do if someone told Teddy that he couldn't do something because he was too different. His response, "I'd stand up for him."

Sweet dreams, my boys. Sweet dreams.

"I Don't Think Teddy Will Ever Talk"

"I don't think Teddy will ever talk."

That sentence from AJ while I was doing dishes stopped me in my tracks. Fortunately, Dave was home as well to help steer the conversation. We've talked about Teddy needing more help and using his tablet to help him make choices, but this was the kick-in-the-gut conversation that AJ is understanding Teddy is significantly different than him.

The topic came up again today when AJ asked why Teddy doesn't have the Pizza Hut reading program. I explained that AJ didn't have that program either in 4K. AJ proceeded to say that he didn't think Teddy would have it next year. He followed up with saying that he thinks Teddy should be able to read words like "a" and "my" already.

I paused for a moment to gather my thoughts before explaining that even if Teddy could read those words, we wouldn't really know right now because we're still trying to find ways to understand Teddy better. I said that we know Teddy knows some words, like bus, because he looks for a bus whenever we say that word. I said, though, it's hard to know exactly what Teddy knows and understands. AJ's response to that was, "Right. Because you can't read his mind."

I agreed and said that I wished that I could, but there's a lot of things we're learning to understand when Teddy tells us in his own way.

These conversations are tough. I struggle to find the right things to tell AJ to help him understand and make sense of Teddy's abilities despite his differences. I know part of the reason I struggle is because I still long to hear the words "I love you" come from Teddy's mouth ... and I don't know that they ever will.

He says that phrase when he climbs into my lap at meals (and drives me nuts in the process). He says that phrase when he flaps his arms and jumps when he sees me walk into the house. He says that phrase when he snuggles into me. He says that when he covers my head with a blanket and then peeks his head underneath by mine. He says that phrase with his joyful smile.

But that doesn't stop me from wanting the words.

And that's just the wistful part of me. The practical part of me wants to know when Teddy's hurt or ill, what he wants, what he knows and what's going on in that mind of his. As I told AJ, Teddy knows a lot more than we realize.

These will be the first of many conversations with AJ as he develops a full understanding of Teddy and comes to terms with it. He's beyond thinking that Teddy doesn't do things because he's a baby and will continue to question why Teddy doesn't do things that other children his age do.

On the bright side, despite these tough conversations, AJ is already an empathetic child who is extremely helpful. (He's the only person who's ever flossed Teddy's teeth. Not even the dentist attempts that.) He will be already is a better person for having Teddy as his brother.

And lest this post seem disheartening, I need to end it by saying that my phrase this week has been abundantly blessed. Dave has been gone all week for work, and my mom, who often helps with the boys when we need help, is in Hawaii. Our sitter offered to help with bedtime all but one night. My aunt came up from Milwaukee for a visit, took AJ to swim class and spent one night with us. Dave's folks came down to stay with AJ while I took Teddy to swim class (and originally planned to come both nights for swim class). My friends came for dinner one night, and one brought AJ a coveted Hatchimal Collectible. Our village is here to help us raise our children. We are indeed abundantly blessed.

I Know Different

We've settled into our usual routines with Teddy acting completely like his happy, goofy self. AJ ran right to Teddy and held him tight for a long hug when they first saw each other, and Teddy kept trying to put AJ's arms around him for more hugs at bedtime that night.

Another person who really missed Teddy was his friend Max, who he sits by on the bus ride home. Apparently Max asked about Teddy every day, asking whether Teddy would be back Monday for sure and then whether it was already Monday. Those two crack me up, and I'm happy they have each other for entertainment on the bus.

This is short because I wrote novels each day last week. Someone shared this poem by Tricia Proefrock, and each part of it rings so true to me. 

I KNOW DIFFERENT

Dear mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can't do...I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me...I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid...I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I'm getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren't good enough, and that you will fail me...BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. 

Through the Eyes of Other Children

In the last couple days, the neighborhood kids discovered that we have the "coolest basement ever!" That's their description, not mine. This means that we've had the neighborhood children constantly in our house or backyard or all the children playing in the cul de sac.

That also means that today alone I had conversations with two different children regarding Teddy. The 9-year-old boy asked me if Teddy was learning to talk yet. My response was he didn't have words yet, but that he has his own ways to let us know what he wants. I gave the example of Teddy coming by us meaning he wants to play with us and be included ... and then the conversation ended as I chased Teddy in the opposite direction.

Then the 6-year-old girl was swinging on our tire swing with Teddy. She told me she has a lazy boy in her class who's just like Teddy. I asked if that boy talked, and she said he didn't talk at all. She said she didn't know why he didn't talk. I explained that some things were easy for some people and hard for other people. I said we're all good at different things and said Teddy's really good at climbing.

It's interesting to hear their perceptions and their questions, and I try my best to answer honestly but positively because Teddy does have so many strengths. And I know adults have the same questions ... two of our adult neighbors have asked in the last month or so if Teddy will ever learn to talk. My response the first time was, "That's hard to say ..." and followed that up with a more detailed explanation that some of the children with his diagnosis use communication devices, a few words and some signs.

The reality is it is hard to say because I believe Teddy will never have the full range of communication that I would love for him to have. As a communication major, newspaper editor and someone who finds great comfort and clarity in writing, I have a child who fits the label of non-verbal currently. I have no doubt he will continue to find ways to express himself, but I'll never know all that roams through that mind of his. He's 4 ... and I've never heard Teddy speak the words "I love you." Don't get me wrong, I've seen Teddy say I love you. He says it with his smile, the way he lights up when there's that connection and the (often painful) dive into you. But part of me still wants to hear those words.

And as much as I want to hear those words, I want to be able to understand him. I want to know what he knows. I want him to have a voice to express himself.

Until then, I'll do my best to interpret and speak for Teddy. And AJ will continue to speak for Teddy using his "Teddy voice."

The footnote I have to add, as I sit here in tears, is remembering what happened when Teddy and I were in the neighbor's driveway as the kids played together in the cul de sac. The little girl who turns 5 next week awkwardly was trying to ride our Ziggle while pulling a tricycle behind her. I chuckled at the sight, and her dad asked what she was doing. Her response, "I'm bringing Teddy his tricycle." Although the children often get caught up in their play and forget to wait, include or allow Teddy to play with them, she very intentionally dragged a tricycle all the way over to include Teddy.