Caris Smythe*
I’ve always believed that to combat stigma we need to discuss mental health issues openly. This has been the credo by which I’ve lived my life.
When my son Liam* was about to enter a new school for grade one, I disclosed to the school principal—after discussion with my family doctor and much thought—that I live with bipolar disorder.
I had debated this credo beforehand: Might my disclosure affect Liam’s life? Would there be a stigmatic trickle-down effect? On the other hand, maybe talking about my illness would be helpful in case Liam were to develop his own mental health issues.
Much to my astonishment and horror, the principal’s response was: “How will you interact with teachers and staff? Will you be aggressive or violent?â€
The school year hadn’t even started and stigma had already raised its ugly head.
Liam and me
My son is an extremely bright child with unique abilities and challenges. Until he was about four, Liam had some problems with motor skills, including an inability to speak properly. He did well in the calm atmosphere of a Montessori preschool and kindergarten. But in the late fall of his grade one year, at his new school, much of Liam’s uniqueness came to the fore.
Currently, Liam has an ‘official’ diagnosis of attention-deficit hyperactivity disorder (ADHD). However, he exhibits symptoms of obsessive-compulsive disorder (OCD), high anxiety and seasonal affective disorder (SAD). Liam also copes with sensory processing disorder; that is, he has sound and touch hypersensitivities. In addition, he has challenges with social skills.
We’ve had a rough time, Liam and me. I probably had early bipolar disorder, beginning at age six—and had a mother in denial. (I wasn’t officially diagnosed until the age of 32.) I was a high-achieving student—and as a teen I struggled with alcohol. I’ve been a single parent since Liam was a year old. And I spent the majority of Liam’s preschool years almost catatonic, sleeping 20 hours a day, while Liam’s grandmother looked after him.
Because I continue to struggle with bipolar disorder, I’ve have been unable to go back to work. I had also disclosed to school staff that we lived on a provincial disability income (which is about 50% beneath the poverty line). At times we needed funding assistance for supplies and so Liam could participate in camps and other special activities. The school—largely attended by kids from well-off families—was aware that I had a mental health issue and was poor. Double stigma effect!
On a roller coaster that never stops
Having a child with “special needs†in the school system is like being on a roller coaster that continually gains speed and doesn’t stop. I realized quickly that I was going to have to work with the school to figure out and set up accommodations for Liam. So began an ongoing struggle to find our way through the bureaucratic maze of assessments, labels and individual education plans, or IEPs (an IEP is a plan written specifically for Liam that describes the program modifications and/or adaptations he needs and the services to be provided).
As my son’s advocate, I’m in constant communication with his school-based team (SBT). The SBT includes the teacher, learning assistant, speech language pathologist, counsellor, principal, pediatrician and child psychiatrist.
As an advocate, I’d like to think these professionals would be capable of assuming a position of neutrality. I cling to a personal fantasy that the world is inhabited by kind, compassionate, non-judgmental and stigma-free individuals. Liam and I received wonderful consideration and assistance from most of the educators and support workers. But unfortunately, stigma continues to rear its head when I least expect it.
A distressing encounter
Liam holds all of his frustration and anger inside while at school. He waits until he’s at home, in a “safe†environment, to unleash all his pent-up emotions from the day. I had told school staff about his explosive behaviour at home.
Because Liam’s behaviour was so changeable, school staff questioned my parenting and highly recommended that I take a parenting course. So I took the regular Triple P—Positive Parenting Program from April to June 2006. There was a Triple ‘P’ Parenting program available for parents of children with special needs, but this one was a prerequisite.
I did try to implement the methods and suggestions given in the regular program. Unfortunately, many of these methods simply didn’t work for Liam and me because of Liam’s specific issues, many not yet diagnosed. It was extremely frustrating. Â
As part of the program, a practitioner, to whom I had disclosed about having bipolar disorder, came to our home to watch me interact with Liam and to help with the implementation of the program. I voiced my concerns and frustrations to her and was told I was a “bad parent.†Because I wasn’t completely ascribing to the program. The practitioner repeatedly told me I was a “bad parent.†This did wonders for my self esteem!
Incidentally, the Triple Program brochure states: “There is no ‘right’ way to raise healthy, well-adjusted children.†And when it comes right down to it, you—and only you—as a parent know what is best for your child.
Boundaries, anyone?
In September 2006 Liam entered grade two. September is start-up time, right? A new teacher, being surrounded by new students, being in a split-grade class, going through fire and earthquake drills—this and all the other back-to-school regimens overwhelmed Liam. He has a great deal of anxiety regarding new social groups and routines. Furthermore, he doesn’t transition well from one activity or situation to another. So Liam’s anxiety level was extraordinarily high. In addition, he began seeing a worker from the Boys and Girls Club, and both soccer season and Friday Night Basketball were starting.
As for me, on top of advocating for Liam in all this and managing my own mental health, I was trying to secure funding for the basketball program, buy school supplies and put together an earthquake comfort kit. For my own self care, I had begun a Learn to Run 10 KM program. And I was running my father’s one-man business because he was out of town. The pressure was huge.
Early in September the school’s child and youth worker came to my home for our second meeting of the school year. We were discussing how the start of the school year was going and the plans that were in place for Liam.
Suddenly, out of the blue, the worker asked, “Are you manic?†I was stunned by her question. I was certainly exhausted and running on pure nerve, but I was definitely not manic.
This was an inappropriate comment. Even in an appropriate situation, such a question must be posed with an enormous amount of gentleness and tact. Did this woman even understand what mania looks like? Or was “mania†simply a word to her? Did she have any idea how offensive the question was? Did she understand the implications of asking me such a question? I started to doubt myself. Had I misread myself? Was I, indeed, manic? My insecurity mushroomed. I was so thrown off that I had to seek the opinions of people I trusted—close friends and medical professionals. Obviously, this worker hadn’t stopped to think before asking that question.
The invisible disease
The issues for Liam continued. One day after school in the spring of 2007, the counsellor asked if she could speak with me. Rather than taking me to her office, our conversation began in the hallway and proceeded to the photocopy room, where we were continually interrupted. I felt awkward about discussing Liam’s issues so publicly, and there seemed to be an odd undercurrent to the tone of the conversation. Suddenly, the counsellor moved us across the hall into the principal’s office and point-blank asked, “When are you going to get a job?â€
Shocked. Flabbergasted. I just sat there. Finally, I exploded, bursting into tears and storming out of the office.
The invisible illness! What? I looked fine, therefore I must be fine and work-ready? Just because I could manage to pick Liam up after school didn’t mean I was capable of employment. And how was it her business anyway?
If I’d been a parent of privilege, would I have been asked this question? There were many mothers at Liam’s school who chose to stay at home with their school-age children. Isn’t being a mother a job, and a more than full-time one at that? Particularly when you’re a single mom and your child has unique needs that have to be advocated for? Quite frankly, being Liam’s advocate is a full-time job!
Déjà vu
Last June (2008), I was speaking with the principal about Liam’s class placement for the following September. It was a cordial conversation. But as the conversation drew to a close, the principal said, “So, what’s next for you? Are you going to get a job?†I stammered something feeble like “now is not the time.â€
Was I angry? You bet. This was twice now I’d been asked that question. I feel sad that now I’ve developed a repertoire of ‘prepared’ responses to help me deal with questions like this in case they arise again.
I was—and am—an excellent mother and advocate for Liam. Isn’t that enough?
A new start—undisclosed!
Liam has now changed schools. The new school doesn’t know about my financial situation or my mental health diagnosis. Though I may never know what the stigmatic trickle-down effect on Liam was, I won’t put him in that ‘disclosed’ situation again. As much as I’ve fought to combat stigma over the years, it’s a battle I can’t put Liam in the middle of. Our society is not as progressive as I would like to think it is.
* pseudonyms
Footnote
1.   “The Montessori method is a child-centred alternative educational method for children, based on theories of child development originated by Italian educator Maria Montessori (1870-1952). . . . The Montessori method is characterized by an emphasis on self-directed activity on the part of the child and clinical observation on the part of the teacher (often called a director, directress or guide). It stresses the importance of adapting the child’s learning environment to his or her developmental level, and of the role of physical activity in absorbing abstract concepts and practical skills. It is also characterized by the use of autodidactic (self-correcting) equipment for introduction and learning of various concepts.â€Â http://en.wikipedia.org/wiki/Montessori_education
Caris is a dedicated mother and volunteer. She and her son enjoy camping and exploring this beautiful province
*reprinted from Visions: BC's Mental Health and Addictions Journal, 2009, Vol. 5 No. 2, p. 11-13
