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.

Things I've Learned in 7 Years as Teddy's Mom

Seven years ago today, Teddy made his entrance into this world in a rather dramatic fashion. As we celebrate his birthday during a pandemic this year, where birthday celebrations look much different, I thought it would be a good time to reflect on lessons learned living with Teddy. In no particular order, here goes:

1. I know what seizures look like. Well, at least a wide variety of seizures. There's still a part of me that wonders if we've missed some of Teddy's seizure activity because we're not well enough trained to see them. But those shake, rattle and roll ones, those we recognize.
2. A rare genetic disorder diagnosis changes everything and nothing in an instant.
3. The world is much smaller than you think. Teddy's gotten birthday cards from Poland and birthday greetings from Germany and Australia from other families with his diagnosis.
4. Live in the moment. All the time.
5. If you are excited to see someone, show them. Preferably by jumping up and down and grinning like a maniac. 
6. If something is fun, share it with others. Fun things aren't meant to be hoarded, they're meant to be shared.
7. If you're hungry and it looks tasty, eat it. Apparently this applies to paper products as well ... not sure about that.
8. If someone says no to a request, you clearly didn't ask them in the right way. Continue to ask, and be persistent. They'll often agree to your request eventually. 
9. Licking people is funny.
10. Only one person can ride in the back of an ambulance ... if they even let one person. Otherwise, only one person can ride up front. 
11. We have an incredibly supportive family, who will drop anything and come when needed, even in the middle of the night. 
12. Cell phone service in the Oshkosh emergency room is rather poor.
13. Speech, OT, PT, hippotherapy and music therapy all can do amazing things to help someone progress. 
14. Progress can be measured in inchstones rather than milestones.
15. It is possible to backpack a 55-pound child who is getting really tall. It's just not possible for long distances anymore. 
16. Persistence is key. If you keep trying, eventually, you can find a way to do most things. It may not be pretty or perfect, but you can find a way to make things work.
17. Always bring baby wipes to swim class. Always bring baby wipes everywhere. Wiping poop with your fingers is something you never want to repeat.
18. Poison Control Center folks are really pleasant and helpful. Multiple calls have confirmed this.
19. On a related note, a child can consume an entire bottle of children's tylenol and be fine if they are the same weight as Teddy was. Also, if a child consumes hand sanitizer, the greatest risk is alcohol poisoning and you should watch for signs of drunkenness. Oh, vitamin E in small doses isn't overly problematic either.
20. Smile at other people. It makes life better.
21. My TEAM Triumph is an amazing organization that builds incredible connections in our communities. If you enjoy running, biking or swimming, you should definitely check it out. You don't need to be an incredible athlete to be an angel and make a difference in someone's life. Some of our greatest supports come from MTT. #runlikeangels
22. Children's Hospital has some incredible doctors and nurses, as does Oshkosh emergency room.
23. Dr. Terrence Edgar is an absolutely phenomenal pediatric neurologist. I hope Teddy ages out of pediatrics before he retires or moves. 
24. National Institutes of Health does all sorts of rather awesome research and treatment. There's also an extremely nice facility for families to stay at during their visits there, although airport-level security is required each time you enter the facility. 
25. Life doesn't go as planned. Ever. But trusting that God has a plan and the prayers and love of all our support help us manage through life. 

Happy 7th birthday Teddy!

Not Our Traditional Vacation

Like so many others, our vacation plans were demolished by COVID before we even finalized them. We had planned to rent out our house during EAA (cancelled) this year for the first time and head to the Black Hills area for the week to introduce the boys to Mount Rushmore, Custer State Park, a few caves and revisit some past stops like Badlands and Chubby Chipmunk truffles. We hadn't made any reservations by the time the pandemic struck, which is good, since we would have had to cancel them all.

Our sitter is on vacation this week, renting a lake house with her family as safely as possible during the pandemic, so we headed down to our land for the week. We came down Saturday afternoon and are planning to head back late Saturday or Sunday morning. The good news is that Teddy actually falls asleep here with minimal fuss, likely because he's so exhausted from all the fresh air, playing in the river, oh, and getting up at 5 a.m. or earlier every day. Still, it's wonderful not to have to fight the battle to sleep that occurs on vacations in hotel rooms or even our tent. And Dave is a saint for taking Teddy for early morning drives to allow the rest of us some more sleep.

It doesn't feel like vacation, more like a long weekend, especially since except for a few days I'm still fielding calls for work. That violates my standards for vacation, but extraordinary times call for extraordinary measures. But we're spending a lot of time outdoors, a lot of time together and still making memories.

This kid can convince most people to do just about anything.

We've covered a few projects, like hanging a second swing, moving rocks away from our garage, fixing the tractor and organizing the garage. We've also broken a few things, like the Ranger's radiator fan and the tractor's hydraulics that we just fixed. We've had visitors like my aunt one day and uncle another day. We've taken Ranger and tractor rides and Tahoe rides when both those were broken, but we've also done far more walks. We've made foraged mojitos and grilled some delicious breakfasts. We've played in the river every day except one, when it was cooler and rainy. We've had a fire and watched fireflies. We've seen misty mornings.

So much style. So much class.

Heck, today we even ventured to Effigy Mounds National Monument, which made it feel darn close to a real vacation for us. We all had masks, although Teddy pretty much just chewed on the string on his. We rarely had to use them because there were relatively few people and several opportunities to give each other enough space. I was pleasantly surprised that more than half of those we encountered had masks, and it was a really enjoyable 2-mile hike to look at some of the burial mounds. I was impressed with how much hiking Teddy did, especially of the 350-foot incline that started the hike. He managed about a third to half of that, along with two other sections of hiking. Granted, one section of hiking was inspired by the maintenance lawnmower he heard and the other was motivated by pushing me down the steep incline, which was great fun for him.

It's so neat to watch him take off down a hiking path, especially since I know our days of carrying him are limited. Each summer I say, just one more year, and then each year I still carry him. When we were hiking with my mom, she said that I can't carry him because I'll hurt myself. My answer was that without carrying him we wouldn't be able to enjoy the beautiful hike we were on. She understands why we carry him, and I understand her concern. But I'll carry him as long as I can because it's the only way for us to enjoy the places we want to explore. We don't live in an accessible world, so Teddy depends on us to make the world accessible for him as much as we can.

We even stopped for ice cream on the way back to the land, ordering with masks and eating in the vehicle, but it felt truly like vacation with a national park site, ice cream and a bit of windshield time. We are looking forward to revisiting Effigy Mounds in the future when we can go inside the visitor center and explore a bit more under normal circumstances.

Teddy is the Best Brother to Me

AJ wanted to do a guest blog post, so here it is:

Hi, it's AJ. Since I have not wrote in a while, I thought that would do one. 

Teddy is a great brother during quarantine... even though he's getting cranky because  he is acting crazy like doing the plank on the handles of the treadmill and he is playing with the lights. But also we have to stay home more and wear masks like everyone should that does not want to get sick with COVID-19. 

I'm excited about the fact that we hit the no seizure for 1 year on June 10. Yay !!! 

But now is when I realized the most and best of my brother because of stay at home, and we have played a lot more with Teddy, and Teddy still learning. 

A week ago, I got stung by 2 hornets, and my brother had 5 swarming his head but amazingly no stings ... mind blowing!!! 

Our summer has been going good!!

Fireworks at the land.

Thinking and Tinkering

We spent about an hour playing in the garage earlier this week, with Teddy showing off all his skills riding different toys for his grandparents and bossing them around by making the take turns sitting on the lawn mower. It was fun to slow down and watch not only his physical skills as he rode a tricycle, a scooter and a ziggle but also his fine motor and motor planning skills.

For example, he zoomed around on the bike, backing up to avoid hitting the garage door, steering around obstacles and handling it like a pro. He has learned to actually scooter on the 3-wheeled scooter that provides a bit more balance. (He also believes he can do the 2-wheeled scooter just fine for the record. That is terrifying to watch.) When we encouraged him to show off the ziggle, he went across the garage first to get a helmet, stuck it on his head and proceeded to chew on the strap and then hopped on the ziggle. Part of the helmet was loose and in his face, so he attempted several times to adjust it because he recognized it wasn't right. I'm not quite sure why the ziggle requires a helmet, but I was glad to see at least something triggered the need to wear a helmet.

Then Teddy decided that he needed to do repairs on the various bikes. He got the socket wrench we use to put the bike carrier on the Tahoe, took it to his trike and began manipulating it around the wheel. Then he moved on the the ziggle, flipped it over and started "working" on it.

This type of physical play, fine motor coordination and pretend play is all fantastic to see. It was a nice opportunity to relax and enjoy the progress that Teddy has made.