He gets a headache when he reads more than five pages. He hates doing his homework. Talk to him about doing schoolwork and he's suddenly full of angst. Is he lazy?
She throws a temper tantrum when you coax her to complete at least two math problems. And finally, you give up. You'll try again tomorrow morning. Is she calculating?
He's fine all day, with the grandparents, even with his dad. But when mom comes home, suddenly, he's angry and depressed, with his body aching. "He wasn't like this until you came home," the mom is told. "He's a smart kid and knows how to manipulate you," the parents hear from the professionals.
She refuses to sit anywhere but at the head of the table. Refuses to use the new silverware. She argues with her sister about it. Is she rigid?
"I have to have this new toy," he says. "I have to, I have to! I can't even tell you why. I can't eat or drink until I do!" Is he spoiled?
Today, in our American world (at least in upscale neighborhoods in the Northeast,) our children are considered quite entitled. They chatter away at school when the teacher wants them to quiet down. They even draw up petitions for the principal to request a new and improved playground. They travel to exotic locales on their holidays. Not all the kids. Many stay home. And then there are those kids who spend the holidays visiting doctors or running around in the neighborhood, trying to avoid venturing into the yard of that old, mean neighbor. They brag about their Christmas and Hanukkah presents. They plan their next playdates. They question their parents and other authority.
So, are we teaching our kids to be lazy, stubborn, spoiled and manipulative? Are we teaching them to be disrespectful?
Sloth
As a teacher for something like sixteen years now, I don't believe that kids are lazy. And I'll tell any parent that. Children want to please. They want to learn.
When it comes to homework, there are many issues.
#1, it's too hard.
#2, it's too easy.
#3, it's just NOT interesting (as is often the case--and I don't blame the teachers--we often HAVE to give a certain amount of homework, as well as prepare our students for those tests that the government is spending millions of dollars on that will "measure" how well we teach. Having said that, I try to give interesting homework, or projects, but I'm not perfect. Plus, what I deem interesting might be boring to someone else.)
#4, your child is just brain-drained after a full day at school.
#5, your child needs to run around and exercise after sitting on her butt most of the day and containing all her energy.
#6, your child is upset--an argument with friends, a family issue, a pimple on her face, a party she wasn't invited to, a "tiny" bullying incident he doesn't want to share.
#7, your child might have a learning disability or a processing issue of some kind that makes it difficult to learn.
PANDAS and Lyme both introduce processing issues that may have not previously existed. When it comes to math, many children with PANDAS suddenly have difficulty. Short-term memory and processing issues make calculating difficult (although your child might still be very calculating in other ways.) Math facts might be lost, only to be re-learned when your child is no longer in a flare. Some children have expressive language challenges and might need a wordbank in order to access vocabulary. Low frustration levels, especially at night (the witching hour) abound. We need to select the best times to work with our children. And offer rewards, not punishments.
Inflexibility
I find that my PANDAS child has always had some difficulty with transitions. He's not autisic or anywhere on the spectrum. When he was two years old, I'd bundle a protesting little boy into his snowsuit and carry him outside to toss snow around. Once out, he was the happiest little boy and didn't want to come in. We learned, as many parents do, to give a "heads-up" when switching from one activity to another.
But having to sit in one seat at the table is another form of rigidity and this is a symptom of OCD, which in this case, is caused by PANDAS. We've gotta pick our battles and since we have a ton of them, my little guy can sit where he needs to sit. End of story. For now. But when my husband started saying he would only sit in one chair, I started to get a little wary. "What?" And then he expained and it had nothing to do with OCD. Phew!
Spoiled Brat
Oh, no, he's not spoiled. He just had to--HAD TO!--have this one particular toy. One parent lets her son go on eBay and bid for low-priced items when he gets like this. A teenager who's been through this says not to give in too often, because the urges will grow stronger. My son's brain was acting up. I've seen it before, wherein he believed that if he only had a certain item, he would be better. No, child, buying you an iTouch will not cure your PANDAS. Or Lyme. I think this is where cognitive behavior therapy and exposure therapy would help. But when you, the parent, do give in, don't wallow in a guilt trip. We're all doing our best. Children who are medically sick are needy in so many ways.
Something else we find ourselves doing is allowing our child to sleep in our bed or in our bedroom at night. Separation anxiety, nightmares, migraines, sleeplessness--they make for a bad night. Many of the children suffering from PANDAS can't sleep on their own anymore (even if once, they were able to.) And I find that the "well" sibling who holds herself together marvelously during the day, also does the midnight musical bed routine. Sleeping bags are the way to go.
Privacy? What's that?
Manipulation
The glass is half empty or its half full. For years, I thought that my boy had so much strength inside that he was able to hold it together in front of the rest of the world and contain all his upset for...well, me. Because home and parents are safe. The first set of doctors cast doubt on this and we reprimanded our son for his behaviors. I felt like I was the only one who truly believed that all the Taekwondo he'd done, all the parenting we'd done, and the good-natured, social person he was had given him perseverence. And then he cut his fingers in school with scissors.
All people manipulate to some extent. We all try to control our environment, and that's not a bad thing, but a survival behavior. But to accuse our children who are battling an illness of being manipulative? That's too much. Would we take it kindly if a child with brain cancer is accused of being manipulative? PANDAS is so much harder for people to understand. If our children had chemotherapy and lost their hair (G-d forbid,) people would feel more empathy. But PANDAS, because of its tics and OCD, is too closely related to diseases that still carry stigma. What I'd give to manipulate the media that exploits mental disease! (Think Charlie Sheen.)
Insolence
OK. I admit it. My child with PANDAS has cursed at me, at the world, at my husband, at his little sister, at that cute dog in the PANDA hat at the top of this page. My healthy daughter has talked back to us in a way that I would never have done. My mother threatened to wash my mouth out with soap when I came back from camp one summer. I'd learned horseback riding and the F word. And when I was a teenager, I got slapped in the face (and I swear, I wasn't even rude.)
We don't wash their mouths out with soap (although we've threatened.) I don't slap my kids' butts, much less their faces. As for my son, when he's like this, he's raging and in a bad way and needs to be held. He cannot help himself and the part of him that is vying for control will beg for help. He hasn't been healthy enough in the last three years to have a normal defiance.
As for my daughter, she was always confident and questioning (until her brother's illness) and we love this about her. We don't let her get away with disrespectful behaviors to us. And she knows better than to speak this way to her teachers or other adults. But I'd love to have her as my attorney or even my spokesperson someday if that's what she chooses to do. She's an incredible person already.
I like the fact that our children have learned to question authority, albeit in a respectful way. Our political leaders do not always make the right decisions for our collective futures. We can never again allow a Holocaust to occur. The Milgram experiment at Yale University in 1961 proved that we cannot blindly obey authority. We must always question and we must teach our children that it is integral that they do so.
Where do our children with PANDAS and Lyme come into this? We, as parents, must question authority. Every week, on the PANDAS suppport threads, people write about doctors who dismiss their children's symptoms and deny that PANDAS exists. However, once we do find a good PANDAS doctor, our children have to take all their medicines. They must obey us in this, although many of these medicines can cause averse reactions. Where is the line drawn? How do we know what is helping vs. that which is harming?
Truth
Many normal childhood behaviors we see can be viewed in different ways. Stubborness can be perceived as perseverance. Attitude becomes confidence or defensiveness.
For our children who suffer from PANDAS, Lyme or any other affliction, we need to take a good long look at how we as parents and teachers react to their behaviors. Because their "negative" behaviors are often consequences of their illness and not attempts at shirking work or snatching a new toy. Rewards, and not punishments, are the best way to go. Our children already feel badly about themselves.
But these kids of ours are resilient. Respect their grit and build on it. They are forced to be strong and persevering. They need constant recogniton for each of their strengths and for every achievement they make despite the many obstacles.
And kids know what the story is. They do. Kids really know everything.