Saturday, February 17, 2018

Sick Days

Years ago when I worked for a hospital's Marketing/PR department, we attended a retreat featuring two consultants whose talk centered around "customization." Their point, which proved to be accurate, was that the trends were pointing to people more and more wanting an individualized experience, whether that came to retail, vacations, or even healthcare. The key was to tailor products towards meeting each person's unique needs or preferences -- and to make that point they gave us little goodie bags based on a series of questions we'd answered in advance. Among my special items were chocolate chip cookies (a favorite food), journal (for my love of writing), and a C.S. Lewis book (relating to someone, dead or alive, I'd said I'd like to meet).

When it comes to our kids, I don't think any one of us needs a high-priced consultant to tell us that a one-sized approach does NOT fit all, and it's extremely beneficial to tailor everything from your discipline techniques, rewards, or praise to each child's individual needs. And while back at that retreat years ago I never quite understand how healthcare could be highly customized -- I'm learning that in our house, one of the areas in which they need drastically different approaches is, of all things, when they're sick.

I have always been one who likes to pamper people when they're not feeling well or hurt. Some people probably call it fussing. I most likely get it from my grandmother, who was always fretting that people were too cold and giving me St. Joseph baby aspirins for my sore legs when I slept over. I like to tuck blankets around people and bring them drinks. I go overboard with temperature-taking. This is a way, in my head, I like to show care and concern for people, so it came as pretty much a shock to me when Anna was little and hated it all.

When she was sick, she was in denial. She refused to stay in pajamas. She wanted no pampering; no blankets. She'd do everything to fight taking a sick day from school, including, to our frustration, going to school with strep throat and ear infections (we would learn later) several times when she was younger.

In time I realized that I couldn't take Anna's reaction when she was sick as anything personal, and it was pointless to continue fighting. We focused instead on her being at least truthful when she was not feeling well, and not over-exerting herself or infecting others because she wanted to act like she was fine. Trying to force my way of parenting in this regard wasn't really helping her -- just stressing her out.

Now Ethan on the other hand doesn't mind being fussed over at all when he's sick. One of the greatest ironies is that my one kid on the autism spectrum can be very cuddly, especially when he's not feeling well. So I go all out with my blankets and medicines and warm drinks and books and I'm in all my glory. Except, of course, that after a while it's awful to see your kids sick and you just want them well and themselves again.

So now we come to Chloe, who just turned four and is getting smarter and more observant about the way the world works. A few weeks ago she jumped off the couch and hurt her foot. Of course it was one of those things that happened when no one was looking so it was hard to understand exactly what she did. All we knew is that she was limping and said her foot hurt. I was impressed she willingly let us put ice on her and sat for quite awhile uncomplainingly. The night I fussed over her and putting her foot up on a pillow and gave her some medicine because she said she couldn't fall asleep because it hurt.

The next morning she wanted me to carry her up the stairs so I figured it was time for a visit to the doctor. Interestingly, as we headed into the doctor's parking lot she was limping, but in the office she was able to jump up and down without an issue. The doctor was unsure and said we could get an X-ray if we wanted to or hold off -- and I would have undoubtedly waited, except, when I was a kid I dropped a brick on my foot and broke it and walked around with it broken for a week. Since I was always the type to complain about sore legs, people thought I was just whining again. Plus Chloe had starting limping again as we walked out to the car.

We got the X-ray. Everything was fine. The next morning she was jumping around like nothing had happened...until I asked her about her foot. Her demeanor changed. "It hurts still," she said in a downcast voice. She grabbed onto it and started rubbing. The wheels in my head started turning...

...and were still turning a few days later when Anna came down with a cold. "My throat hurts," Chloe announced. I took her temperature. Normal. She was eating fine. "I think my nose is a little stuffy too," she told me, giving a few extra sniffs for emphasis. For days she kept saying that her throat hurt and that she had a cold, although she was otherwise her regular self.

A few days later someone had hurt their finger and of course we all asked the question, "Can you bend it? Yes? Then you're okay." So not long after that I heard Chloe calling to me when I was in the bathroom. "I hurt my finger! I can't bend it!" she added for extra emphasis. Her finger had the tiniest scratch. She could bend it just fine. The more closely I looked, the more I realized the my youngest is quite a little actress. I also realized that as the youngest, she loves getting attention more than almost anything.

So, once again customization comes into play. With Anna, we used to have to convince her she was sick. With Chloe, we'll have to downplay everything.

This makes me laugh a little, because my mom and I have a long-standing joke that when I was a kid, I was always whimpering over something, and she was always saying, "You're fine."

But now with Chloe, I know. That's what she needs to hear sometimes. "You're fine." She doesn't need blankets or Band-aids (which she loves to take out and stick on herself). She needs to learn to speak up only when she really is hurting.

With our kids it's not always about relating to them on our terms or preferences. It's about what's best for them.

I love to pamper when someone's sick, but don't pamper Anna because she doesn't like it.

I love to pamper, and can pamper Ethan that way because it's what most helps him when he's not feeling well.

I love to pamper, but can't pamper Chloe as much as I'd like because she will learn to milk it for everything it's worth.

Customization. While it hasn't translated over all that well into healthcare at this point, I can apply it to how I care for my kids.

I think as parents we all learn this. There is no "one size fits all" approach. Ever. And that's a good thing. That's what makes them the unique and fascinating individuals that they are.
































































Thursday, February 1, 2018

Be the Squeaky Wheel

Ethan has very few accommodations as part of his 504 plan (which went into effect when he switched out of special ed. over a year ago), but one has been to take part in a social skills group with peers.

A social skills group is vital for Ethan. Is it essential? Probably not. Realistically I'd say it's most important that he can speak, read, write, and do everything he needs to function in society. But to function well, social skills are essential. And the older kids get, the more complex and nuanced communication becomes.

If the school had no social skills group available, we'd take him somewhere else, most likely. But they do. They offered it, they put it out there. I probably wouldn't desperately fight to get him the service when there are kids out there who need more. But again -- I mentioned it, they agreed without hesitation. The schools have provided Ethan with an awesome curriculum (Social Thinking) since second grade, and it's taught him (and us) a lot.

Which is why I became pretty infuriated to find out it wasn't happening.

This isn't the first time something like this has gone on, and I know other parents have dealt with this issue, too. And I'd really love to know why.

I believe it's important to extend grace. When the school year begins, of course everyone needs to get settled in with schedules and staffing. I also understand that some weeks, things just happen -- snow days and sick days and field trips and the schedule gets turned upside down. Did I ever expect Ethan would be meeting with his group every single week from day one of school? Of course not. But recently I learned that since school started in late August, he'd gone to his group about three times. And hadn't for months.

I'd started with an email to the person running the group about three weeks after the start of school -- just a "checking in" to see when the group might be starting up. There was no response. Finally sometime in October I heard back that the group would be launching. Great. Ethan came home with a worksheet one day...and then nothing.

I sent another email. No reply. And then when we were meeting with Ethan's developmental pediatrician at the end of November and she asked if he attended a social skills group, he said no.

"What about the one at school?" I asked.

"Oh, we haven't met for a long time," was the reply.

Back to the email again. This time a few days later I magically got a response about what had gone on in the group. I got hopeful. They met up a few weeks later again. But then...you can guess how this goes. Forgive the rude analogy, but it's kind of like kicking a horse to get going, and it trots for a few steps and then slows to nothing once again.

As we moved into January and Ethan said his group still was not meeting, I realized it was time to take things up a notch. I hate doing this, for many reasons. I don't like burning bridges. I don't like having to go over someone's head. Sometimes this feels like "tattling." I'm not naturally an aggressive person. But we all get a little more aggressive, I think, when it comes to our kids and helping them to get what they need.

I wrote the principal an email and basically laid it out there -- this was unacceptable, this was not what we'd agreed upon, and something needed to change. And wouldn't you know, two days later the social skills group kicked in again. And I've received an email update on what was covered, for three weeks in a row now.

Recently Ethan mentioned in passing the other kids in the group, and that's when it really hit me -- this wasn't just affecting him. These other students had also been missing out on the group, and without my speaking up, THEY would still not be receiving the help they need, either.

When Ethan first started in school, I heard it again and again: Be the squeaky wheel. Keep on them. If they know you're involved and paying attention, they'll stay on top of things. They're more likely to give you what you want. Make sure they know you're watching, that you're going to fight for your child.

This kind of sneaky, almost combative language put me on edge. I hated the feeling of mistrust in the air. But sadly, now I understand it. And sadly, I've heard story after story after story from other parents.

I don't want to bury the schools here. I don't want to believe that they do the bare minimum, that they don't have kids' best interests at heart. I want to believe better. I just wish someone would explain to me why parents have to constantly be vigilant or fear their child won't be getting the number of speech hours they are supposed to receive, or OT, or PT, or a social skills group? Many of these children can't speak for themselves. Many parents ask for notes and don't receive them. So, how will they ever know?

Something is wrong here. The answers probably are complex.

So until this is figured out, yes, I will be the squeaky wheel, and more than that, I will encourage the parents with children who are younger, parents who are newer to this, to do the same. At the very least, if you don't want to live life as a cynic, trust, but verify. Every single time. You may be surprised what you learn.