Transitions and Expectations

There's nothing quite like the first semester of freshman year high school for any student. Add a twist of Lyme and some High Anxiety and you have a cocktail for disaster.

My son always had trouble with transitions. When he was a toddler and it was snowing, he would refuse to go outside. But when he was finally bundled up and playing in the snow, he would refuse to come back into the house. Night time wasn't a huge problem; I'd ask him if he wanted to crawl up the steps or if he wanted me to carry him. Having two options worked well for him. Having two options did not work for my daughter--she would make up a third option (not going upstairs at all!)

When middle school began, we were in the beginning of our war against PANDAS and Lyme. This resulted in my boy being unable to think, unable to attend school. He was tutored by the school district at home for nearly two years, returning successfully in the fourth marking period of 7th grade. 

Now it's the start of high school. New school, new friends, new schedules, new teachers, new transportation--too many options, too many choices, too many changes. Everything is new and Nu, it's not working yet. Oh, how I miss those gates that locked at the top of the stairs so that our small children could not fall down. 

Perhaps he's suffered a flare. It's possible. Even someone shedding a FluMist vaccine could potentially set off a kid with immune deficiency and PANDAS. But maybe it's just the stress of transitioning. One of my best friends told me that first semester freshman year was challenging for her oldest boy who is exceedingly bright with no issues. He had to get used to organizing his work and turning in homework exactly on time. Thanks to an IEP, my son has some leeway with deadlines. But so many changes at once have definitely thrown him under the yellow schoolbus, despite the wonderful help he has received from the school.

So, I decided to do a little research.

Sandy Berenbaum, LSW, BDC, writes that "Kids with chronic Lyme might find it hard to retain new information. Lyme also can effect receptive and expressive language, visual-spatial processing, abstract reasoning, processing speed. Just as Lyme disease can affect any part of the body, it can affect any cognitive process."

She adds: "These kids may appear to be distracted easily, have poor concentration, appear scattered, have just about any symptom of attention deficit disorder. Or if the child had ADD before she got Lyme, her ADD symptoms are often exaggerated by the illness."

While that is the case for both my kids, we have seen improvement since beginning treatment. However, when we hit a snag, we removed my son from medications that were working and that needs to be remedied. He is having major issues with focusing. In addition, any child who is withholding tics throughout the day at school is going to be spent by the time they get home. So focusing and studying when the sunshine is receding can be daunting and the cause of much frustration. 

When school is stressful, many other expectations are shoved aside. Yes, kids are expected to brush teeth and shower, but cleaning their bedrooms, making beds, even setting the table or prepping their own breakfasts can be just too much. This creates increased burdens for the adults. What to do?

Although my son is not on the Autism spectrum, PANDAS can mimic certain sensory and cognitive elements of autism. This article by Lynne Soraya states that it might be hard for kids to access certain skills for a multitude of reasons; in fact, some kids develop in what we might consider an atypical fashion. For instance, my son taught himself to juggle, to unicycle and to play electric bass; however, he still has difficulty with buttons, calculator cases that snap on and combination locks. Soraya writes that

"Kids on the spectrum tend to develop asynchronously: “later” skills may develop earlier, “earlier” skills may develop later and skill level in one area will often be vastly out of sync with skill level in another. A child may have advanced skills in memorization or certain areas of academics, yet still struggle to cross the street safely or order his or her own meal in a restaurant.

Another aspect of this is that skills that have been already attained can be variable as well. Why is this? Well, every person has a finite amount of cognitive resources at any point in time to use for things like problem-solving, navigating barriers and making sense of the input from the senses. In most people, a lot of these tasks, such as managing sensory input, are done almost completely subconsciously. In contrast, those of us on the autism spectrum have to utilize a lot more conscious thought and working memory to deal with such things. Because of that, navigating a new situation can easily tax our resources beyond what we can handle."

It’s like the brain is a bucket that fills with too much water: something winds up going over the side, and what “goes over the side” may vary. In my case, what went “over the side” first were executive processing skills. I had trouble getting organized, I’d get lost in environments that should be familiar and worse, I began to lose things. I didn’t know why. Difficulties with academics soon followed."

Oh boy--this is enough to create a lot of anxiety in a person. I know that my bucket was way overfilled last summer when I was herxing from minocycline. I have experienced some of what my own kids have suffered through. The difference is that as an adult, I know what I'm capable of and what I need to aim for, upon improving my health. My kids don't yet understand how bright they are.

Lyme and anxiety often go hand-in-hand. PANDAS and its accompanying symptoms (that look like behaviors and moods) cause stress for every member of the family. Daniel Sonkin, Ph.D, writes that stress is contagious.

According to Sonkin, "This may seem like a bizarre suggestion, but recent neuroscience findings suggest that our brains are wired to communicate in such a way, that when we are feeling anxious, we can contagiously convey that feeling to others, especially those with whom we have a close relationship. That means kids convey their anxiety to parents, and visa versa, parents convey anxiety to their children. Think of it like the flu – contagious especially between people who are in close proximity. One way to reduce the anxiety between parent and child is for one person to break the cycle of emotion contagion."

So, as parents, what do we do about all of this? Every article will encourage positive communication and problem solving. To me, that reads as a "no duh." It's not enough for a child who is a breath away from being unable to attend school. Personally, I can see how having a school that supports the child/student is crucial. My son's guidance counselor has been very accessible and communicative throughout all of this and has helped alleviate some of the stress.

I also read that run-throughs are good; in fact, the high school had just that as well as a freshman orientation. I can also tell you that it's not enough for a kid like mine. Or many others, including children who have no diseases. Perhaps there is no way to completely eradicate the stress around a transition. Perhaps the best we can do is to support our child as best we can, with additional counseling when necessary, with help studying if need be, with encouragement, problem-solving and sometimes direct advocating when our kids cannot advocate for themselves--until they learn to do so. 

I want my son to grow and thrive. I want him to be able to let others know when he is feeling as though he is in a rut. This week, he worried himself sick over upcoming quizzes. Ironically, he came home with 90s on some of these assessments. I have no idea how he accomplished this.

But this transition is NORMAL, whether or not the child has Lyme or PANDAS. In 7 Tips to Help Teens Successfully Transition to High School, Bonnie Rubenstein writes: "The higher academic standards of high school and increased competition will take some time and adjustment. Often students earn their lowest GPA freshman year, and then begin to figure things out.  When I interview students and ask the question “if you could start high school over again, what would you do differently?” many students answer that they would take freshman year more seriously.  Some freshmen don’t even understand that their freshman grades are part of the high school transcript that is submitted when they apply to college."  

Hmmm. Can't wait for those college years. Just kidding.