It was a grey and cloudy afternoon in early fall and the sky had that threatening look of an impending storm. So it seemed oddly appropriate when the school called to say my son was having a storm of his own.
Storm. This is the medical term used to describe a Dystonic episode. If you’ve ever had the misfortune to experience or witness one, then you know it is perfectly named. Just like a real storm, some can be seen coming from a mile away and others appear all of a sudden with no warning. They can be mild and short lived or violent and destructive. Some storms resemble a grand mal seizure where the patient shakes and convulses. But unlike a seizure they are awake and lucid. The experience can be terrifying for my children. When his body will let him, my son tries to hide if he feels one coming. His teacher has found him several times hidden and alone on the floor of the bathroom shaking with his muscles cramping so hard that his little body becomes contorted. He is usually drenched in sweat with tears streaming down his face too frozen by pain to cry properly. Usually the storm ends abruptly. But it leaves with it the promise of returning at any unknown and unexpected moment. It could be in a minute, an hour, a day or a week. The only certainty is that it will come back and it’s victim is left waiting anxiously for signs of the next storm.
In my little boy’s case, this storm happened while he was playing in the classroom and standing over a pile of blocks. His legs and hands locked in a twisted cramp as he fell face first into the corner of a wooden 2×4 style building block. His storming legs and hands made it impossible for him to catch himself or get up, so he just laid hurt and frozen on the floor of his classroom. The incident left him with two black eyes and an impressive goose egg the size of a golf ball just over the bridge of his nose.
The school called to notify me and to see if I wanted them to do anything specific for him. My first reaction was to bring him home, but he refused to leave and said he was fine. So I let him stay. It wasn’t until I picked him up that I saw how bad his injury really was. When I saw him I gasped and I tried not to cry. While I waited for the teacher to give me the detailed account of the event, I was confused when my little boy’s schoolmates waved at him and said, “Bye Bob. See you tomorrow.” I looked at my son and asked, “Who’s bob?” His only response was giggles.
The answer, a product of the event, had a profound impact on me. After he fell and hit his head, the teachers stayed with him and provided what they called “emotional support” until the storm had passed. Next he was immediately assessed by the nurse for concussion and vision impairment and was given ice. Next came the part that impressed me the most. The school’s staff counselor was brought in to manage and asses the social and emotional impact of the incident. Needless to say my little boy was embarrassed. Really embarrassed. He himself didn’t really understand what was happening to him, so how could the other kids? He was worried about what they would think. The Counselor came and answered questions and made sure everyone learned about how to help a friend who needs medical attention. They talked about how bodies are different and that it is okay. The class named my son’s goose egg “Bob the bump” and they took turns guessing what colours it would turn. They took away the fear and the stigma. They made it okay and not weird. The school explained to me that it was important to respond to the social and emotional fallout from events like these, especially for children with chronic conditions. According to the school, failure to do so could have a long term impact on his social, emotional and educational development. My little boy was so comforted by the approach that he refused to leave. And when I picked him up, he was laughing and playing with his friends still holding an ice pack.
The school treated what they called “the whole child”. They looked beyond the physical and treated the emotional impact. When I heard the story of their holistic approach to treating my boy, I felt immediate frustration and I wondered why the doctors and nurses treating my son were not treating the whole child too.
My sons are honestly getting the best medical care available. I love their team of doctors and nurses. They have done so much for us and I am incredibly grateful. But the system stops short at the physical. The reality is that the emotional and psychological impact of dystonia is by far and away the hardest part of dealing with this disorder. It’s in the moments before and after the pain that fear, anxiety, anger and confusion take hold. Pain will pass, but the emotional scars often do not. The emotional side affects must be addressed. However, as a parent, I don’t always know how to appropriately address them and I’m left with questions I can’t answer.
What upsets and saddens me is that in the last four years not one doctor or nurse has asked how we are managing our boy’s emotional health. Not one person has asked how he is doing at school and if his disorder is impacting him socially. Not one person had asked us parents if we need support and resources. No one has treated the whole child.
I fully understand that most doctors and nurses aren’t trained to treat psychological and emotional health complications, but shouldn’t they make sure we don’t need a referral to somebody who is trained in these matters? Shouldn’t they make sure we are aware of support groups and how to access them? Chronic pain has a chronic impact. It releases hormones and chemicals into the brain that have a real effect. When dealing with medicine, doctors are very comfortable referring to other specialists when the patient has complications outside of the doctor’s area of expertise. Why isn’t this the case when it comes to the emotional side-effects of illness? Is the mind not part of the body and related to the condition? Shouldn’t they be worried about the whole child?
For children with chronic conditions to succeed in life they will need to be taught how to manage their feelings of isolation, confusion and fear. This skill will make them happy and healthy people and give them the emotional capacity to deal with their condition and medical situation when things get tough. This should be integrated into the treatment plans of children and adults alike. Questions should be asked and recourses made known.
I was so impressed by the school’s whole child approach that I asked them to help me find a councillor who worked with kids and chronic pain. They connected me to a specialist who had successfully worked with some of their students with chronic illness in the past. Later that week, as I sat in the play room holding my two-year old as he had a storm, I was glad that I had booked the appointment. The events unfolding made it clear that I was going to need it if I was going to help my boys and support them in all aspects of living with their condition.
My baby was scared, confused and crying. He was trying to open his eyes, but his muscles would not respond to the commands he was giving them. I could do nothing but sit on the floor with him in my lap and wait it out. He was was too little to understand what was happening. But my four-year old was not. His reaction caught me off guard and broke me in two. He grabbed his brother and hugged him. With tears in his eyes he said, “I’m so sorry. I tried so hard. I gave them my blood but the cramps still got you. I can’t stop it. I’m sorry.”
This is the part of dystonia I hate more than anything else. It’s the part where my four year old has adult emotions with the understanding of a toddler. I pulled him off his brother and hugged him. I told him it was not his fault. I explained that giving his blood for testing was helping his little brother. I tried to make him understand that this was something no one can stop. But he didn’t get it. He looked at me with determination and said, “I can’t wait to be big and strong. Then I can stop this.”
I instantly wished the doctors and nurses could see this moment and what dystonia does to the psyche of a child. I wished they could see the importance of the whole child and the helplessness that chronic conditions create. And it was in this moment that I truly realized just how badly the medical system had failed to ask some of the most important questions of all.
I am blessed that I have the resources to locate and pay a pain therapist. But what about the majority who don’t? What about the people who are barely able to pay for the much needed medication? Are there resources for them? How do they support their child’s emotional development? Do they qualify for assistance? How do they access community support and programs? Do I qualify for these things? How do I access them? The truth is, I have no idea. No one has asked. Sadly no one has tried to treat my whole child.