I entered the world of parenting thoughtfully. Everything mattered. Everything still matters. I considered what it might be like to have a child with a disability, to have a sick child, how I might be challenged by these things. I don’t think, though, at any point, did I consider that I might have a child who suffered through mental illness. I simply had no reference point.
My daughter, Scout, is twenty one. She is beautiful and smart, passionate and good . She is a good person. Isn’t that what we always want to raise, in the end? Good, kind people? People who are thoughtful and empathetic, giving something to the world around them. People who care deeply about people. She is all these things.
But there was a time I wondered if I might be raising a criminal… or a sociopath. She was high needs – a bottomless pit of neediness. No, more than that. Explosive doesn’t quite cover it. Aggressive. Violent, even.
To be frank, it was a scary time of my life. She had always been a high needs child. We were told, many times, that she was a lot of other adjectives. Like BAD. But even though we sought but had not received any kind of diagnosis, we knew that there was something beyond her control. She was not manipulating us… we knew all her senses were turned way, way up and that she had some unexplained and bizarre fears. We needed to find ways to help her cope.
Sometimes, through the course of our young parent years, we struggled with non coercive, relationship centered parenting. Was it right? Would it turn out happy children, more peaceful family life…empathetic people. We had little in the way of mentors to look to, people who had been there and had older children, adult children, even, that we could meet and be convinced that we were doing was right and true and good.
This child certainly wasn’t looking to me like a happy child.
But the gut feeling just would not go away. Even if we were raising a child who was explosive, aggressive, violent…somehow coercive, punitive parenting did not seem like it was going to solve any problems. Logically, we could not assume that punitive disciplinary methods were going to calm an already wrought up child.
The handful of times we toyed with punishment or coercion, her behaviour escalated immediately. We KNEW we had to keep our relationship with her intact. And at some point, we KNEW something was very, very wrong. It was difficult to get help. On one hand, our doctor told us we were great parents and we were going to blow through this one. On the other hand, unsympathetic bystanders just assumed she was a “bad kid.”
Y’know. One of those bad ones. They just come out that way. Bad.
Our life took a bitter turn when her behaviour started to spin out of control, hurting me, hurting herself, bizarre rituals and fears. She was about seven. Our oldest daughter was eleven, and there were three younger siblings, five, three and a baby.
Eventually Scout was diagnosed with OCD, Obsessive Compulsive Disorder. In a nutshell, OCD is a condition where a thought gets stuck in the brain, usually a disturbing, intrusive thought (the obsession). Repetitive actions or rituals (the compulsion) develop to alleviate the disturbing thought. In retrospect, we shudder to think at what her response to OCD might have looked like if we had chosen a punitive approach to her behaviour.
Some cautionary advice we were given was, “watch for it in your other kids.” Apparently there is a strong genetic element to OCD. So we did watch for it. Ten years later, we were in for another spin…
By the time Scout was 12, she no longer displayed any symptoms of OCD. She even handled stressful situations regarding illness without symptoms. We gradually took her off medication (which we were told she may need to be on all her life) and she has never looked back. And just as she was finishing up homeschooling and about to leave the nest, her baby sister, our youngest, starts displaying OCD symptoms, severely and suddenly.
Overnight, she went from a happy, normal, well adjusted child to a child displaying severely compulsive behaviour, will not eat, nurse, speak or make eye contact. Rosebud was three and a half.
With Scout, I thought she was the “profile” for a child that might have an anxiety disorder…high needs, explosive personality. But now, my calm, placid, easy going little daughter is full on OC. The predisposition theory went right out the window.
Enter, for the first time…the word PANDAS. While researching feverishly OCD in young children, my eldest daughter typed a search in, “sudden onset, OCD, young children.”
PANDAS. Paediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
The National Institute for Mental Health has some excellent information on diagnosis, symptoms and treatment of this disorder. On their website, NIMH describes…
“a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette Syndrome, and in whom symptoms worsen following strep infections such as “Strep throat” and Scarlet Fever.”
“The children usually have dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by a Strep throat infection.” (NIMH website)
She had a strep virus. It all went sideways from there. Apparently, Scout’s childhood illness had been the same, but the connection between strep and this particular childhood OCD had not yet been made.
Rosebud had all of the above symptoms, including tics of the throat which caused her refuse food. She didn’t speak, eat, nurse or make eye contact for about three weeks, from the first of her illness. She curled up on my lap and retreated from the world. I held her and whispered in her ear the comforts that I knew she needed, even though she was unresponsive. My daughter was gone, it seemed. I fought a sense of despair to retreat into my own mind as well, but we had to fight to get her back. I talked and walked her through my own actions; I kept a connection with her always. I walked her through our day, despite her unresponsiveness. After a few weeks, the compulsions started to ease up, she started to speak, and we acted as though that was normal…
For weeks and many months after, separation anxiety was severe, another hallmark of PANDAS. It was like having an infant again. Only heavier.
What we learned about PANDAS was that a child who has had this disorder is predisposed to the tic/OCD if they get another bout of Strep. So we needed an action plan, to minimize the impact this would have on her in the future. Keeping her immune system strong, through diet and supplements, was vital. We helped her brain heal from the attack on the basal ganglia, through “brain foods,” such as Essential Oils and B Vitamins. We kept her safe from outbreaks of strep, simply by instilling good basic hygiene. Children generally outgrow PANDAS by the age of 10 or 12.
If an outbreak of strep was in the community, our first recourse is to do a mini quarantine. Just stay home. The motivation to protect her immune system was suddenly very strong. We eat well, we are active people, but we were now looking at a whole new level of providing protection.
This is not intended to be an alarmist article, nor anything like an exhaustive issue on OCD, PANDAS, or how to diagnose or treat this disorder. It is, however, intended as a cautionary tale, perhaps, on the understanding of a child’s behaviour. If a child is behaving in a particularly unusual manner after or during the onset of strep, it may require a closer look. But I would also like to draw attention to an often overlooked aspect of parenting, the gut feeling. Sometimes we just know – and we especially know that are kids aren’t just “born bad”.
We are our children’s advocates. No one else. The tenacity to get to the bottom of an issue, whether it is physical health, mental health, behavioural is our job as their advocate. Taking that responsibility in the fullest sense, coming alongside a child in their frustration and fear was so much more productive than trying to control behaviour from the outside. We are so grateful for the understanding and modeling we were given to be able to help our daughters through this trauma with love and compassion.
Negative behaviour is a sign of something. Not always something so dramatic, so potentially damaging, as mental illness – but of a disturbance, upset, misunderstanding, illness. Sometimes something so simple, like a child on the brink of learning to read or ride a bike. We prepare our children well to be empathetic, caring adults by the compassion we give them through their difficulties, very big, or very small. We build them up to be good people in the family, which should be the school of love.
|Bonnie Landry lives in a quiet hamlet in a community of real live people on Vancouver Island with her husband Albert and their children. They have homeschooled their brood of seven, ages 26 to 7 for the last 22 years; the oldest three are now spreading their wings. Bonnie blogs over at Practicing Mammal, where her main goal is to support young families in natural parenting and to foster real live communities.|
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