I write this post as I am sitting ten feet away from my coughing, feverish nine-year-old. Cold and flu season is still in full force, despite today being the first day of Spring.
Our youngest son has chronic lung disease. In his seven years, he has been hospitalized several times for respiratory issues that have started with a simple cold. Most people don’t think colds are a big deal, but in our house, it means we go on high alert; watching for fevers, monitoring oxygen levels at night, and watching for any signs of respiratory distress.
It started three days after he was born. He was retaining carbon dioxide in his lungs and no one could figure out why. He was put on a ventilator, on the highest settings, and it wasn’t helping. He was in acute respiratory failure. His only option was to be placed on an ECMO machine- a heart/ lung bypass machine that would, hopefully, allow his lungs to rest and heal. It was a last resort type deal. I remember asking one of the many doctors that were crowded around his incubator what would happen if this didn’t work. She put her hand on my arm and told me that we would have some hard decisions to make.
The next week was a blur. We hoped for the best but tried to prepare for the worst. I didn’t even take any pictures of him when he was on that machine because I kept thinking that if he didn’t pull through, that was not how I wanted to remember him; hooked up to life support machines, with tubes and wires covering what seemed like most of his tiny body.
2 weeks old- fresh off the ECMO machine.
By the grace of God, he made it, only to contract a staph infection in his lung. He was in the NICU at UC Davis for over four months. He came home with a tracheostomy tube, a feeding tube, and a load of medical equipment. Our living room looked like a mini hospital room.
Over the next three and a half years, he would end up in the hospital five times with a severe respiratory illness. The stays lasted anywhere from ten days to two weeks, all at UC Davis which is two and a half hours from home. There were many trips to the ER as well, many rounds of antibiotics, and lots of sleepless nights.
Many of these respiratory issues started with a simple cold, and because of the trauma to his lungs, it would affect him worse than a typical child. Ironically, all the times he had to be placed on a ventilator- the machine that helped him get well- it put more stress on his already compromised lungs.
Today, he is an active seven-year-old, and we haven’t had any lengthy hospital stays in a few years. He does get more of his fair share of colds, and pneumonia is a common winter diagnosis for him. So far, in the last few years, we have been able to manage his illnesses at home with antibiotics and extra breathing treatments. There is still that underlying fear, though, because we have seen him go from feeling fine in the morning to being admitted to the hospital, barely able to breathe, that same evening.
Here’s the thing: what most people see as minor cold could potentially land my child in the hospital. When I know there is a cold/ flu going around his school, I keep him home even if he isn’t showing signs of it. We do all the right stuff; we wash our hands, we disinfect, and we stay clear of crowded, indoor places during cold and flu season. These last few years we’ve been very lucky, and I hope it stays that way, but that nagging fear will probably never go away every time a cold comes through our house.
I was cleaning the other day and I noticed something a little…off.
Then I realized that one of my little lovelies had themselves some fun with scissors.
Of course, everyone is denying it, but I have my suspicions.
Granted those blinds are over ten years old and need replacing anyway, but seriously, kids?
Paint picked off the walls and doors, stains on the carpet, sharpie on the closet door, rips in the couch, marker and scratches on the dining room table, stickers in random places, and three window panes broken and replaced over the last few years.
We’ve pretty much given up on having nice things until the kids are out of the house.
I have never been much of an athlete, or a huge sports fan for that matter. I don’t discourage my kids from playing sports, but I don’t exactly push either. An incident that occurred a few days ago at a local high school is a prime example of why I tend to shy away from competitive sports when it comes to my kids.
It’s not that I think sports are boring. It’s not that I believe that competition is bad; just the opposite. I think kids need healthy competition, and none of this getting an award just for showing up stuff. Competition builds character and prepares children for the real world, where not everything will go their way, and they won’t be applauded for doing the bare minimum. I also don’t worry about my kids getting hurt (ok maybe a little…but not enough to forbid them to play).
My kids have done cross country, soccer, and flag football off an on over the years, and one thing I have noticed that keeps me from hurrying to line up and register for next season’s sport is the behavior of some parents at the games.
My kids are still young. These are not professional athletes. It’s not the playoffs. Screaming at your kid if they are having an off day and miss a goal is not ok. Screaming at someone else’s kid? Definitely not ok. Attacking the ref? You belong in jail.
Friendly competition at kids sporting events has become an even bigger competition among some parents, and I don’t want my kids to experience that if they don’t have to. There is no reason on God’s green earth to be yelling and screaming from the sidelines unless you are cheering yourself hoarse. The fanatical parents are ruining it for the rest of us who just want our kids to enjoy playing a sport they love.
I have no idea who the woman in the article is; a relative or a parent from the opposing team. I would imagine it would be someone vested in the players since the opposing team was from Oakland, which is more than three hours away from here. If it was a parent, what example are they setting?
I wrote a post recently about how we are working with my daughter to teach her how to lose gracefully (or at least be able to accept it). It’s hard to watch your kid pitch a fit if they lose at something, especially when they are working so hard on learning to control themselves and keep calm, so having to watch a capable, grown-ass woman not be able to reign it in is completely disgusting to me.
Taking sass to a whole new level.
After repeatedly telling me “no” on a request I’d made of him, he decided to write it down for emphasis.
He spent so much of his first few years of life being medically fragile; it’s almost like he’s making up for lost time- a delayed “terrible threes” phase at seven years old.
At least, I’m choosing to believe it’s a phase; or else our wine inventory (or my sanity) is about to take a huge hit.
Truthfully, autism is never my friend, but today was one of those days where I wanted to punch autism in the face.
Triggers have always been a part of our autism world. As much as we try to avoid them, they rear their ugly little heads often, and all too often when we least expect it. Our eleven-year-old daughter Lilly was diagnosed just before she turned three, and over the last eleven years, we have seen triggers come and go. Most of her early triggers stemmed from her OCD. She would line her toys up all over our house; windowsills, the floor, the kitchen counters. If anyone dared to move one, or something accidentally got knocked over, she would explode; screaming, crying, stomping her feet and hitting anything and anyone she could reach. She was and still is (to a lesser degree) very possessive of her belongings. She would visibly tense up if someone came too close to her things; she was so afraid that someone would throw a monkey wrench into her little organized system that made sense only to her.
A lot of Lilly’s triggers have been predictable. Sensory issues such as loud noises and bright lights are common causes of meltdowns for kids who have autism, and we have had our share of those. Then there are the triggers that come out of nowhere. We have seen a few of these in the last year. Things that never bothered her before now provoke major meltdowns: losing at board games, or any game for that matter, or not being picked for something at school. The thing about these triggers is that she doesn’t just blow up, she perseverates on them; sometimes for hours.
When they happen at home, it’s hard but also easier to manage. We’re on our own turf, and we’re the only ones who have to deal with it. When they happen in public, it’s a whole different story. I’ve grown beyond the point of being embarrassed about it; now I just go into survival mode. Try and calm her down and remove her from the situation if I can- that is the priority. But it’s not so easy in places like a crowded gymnasium.
Today was one of those days – a trigger happened right in the middle of a vocabulary parade at school. Two kids from each class were awarded prizes for best costumes, and Lilly wasn’t chosen. And to make it worse, her best friend was.
I knew it was going to happen the minute they pulled her friend aside to take her name and have her sit in one of the winner’s chairs. My kid stopped, confused. One of the teachers motioned for her to go sit with her class. She started stomping her feet. Again, the teacher pointed to where her class had begun to sit down. The stomping intensified, and the yelling began. I knew what was going through her mind. Her friend got picked- why didn’t she? Even over the chatter of the crowd, I could hear what she was saying. “Winner! Want to be the winner!”
Her teacher came over, took her hand and led her back to the class, and all the while she’s stomping, yelling and pointing to where her friend was sitting. It felt like I was watching the whole scene in slow motion. I was torn between climbing down over people in the bleachers to get to her, or just letting it play out and hope for the best. Would I make the situation worse if I went over there, or would it upset her even more if I didn’t?
I watched intently from the sidelines as the yelling turned to sobbing and my heart ached. We’ve been working so hard with her on this “winning” thing, where she takes not being chosen so personally. We’ve done social stories, role-playing games, modeling good losing behavior, and reassuring her that she will be picked for something else another time. Yet every time we think we turn a corner on this behavior, something like this happens to set her off: something unexpected that we can’t prepare her for ahead of time. I could see her trying so hard to pull herself together, and when she looked up at me in the bleachers, I gave her a huge smile and two big thumbs up. In reality, I wanted to sit down and cry with her.
I can’t always be there to remove my daughter from a situation that will upset her. She’s going to have to learn to deal with losing, not being picked, or any other trigger that might pop up in the future; that’s part of life. It’s part of the journey of teaching her how to live and function in the real world, but parts of that journey, like today, completely suck.