A mother's story of mental illness: One woman's struggle to get her daughter help
Barabara shares her story about the struggles she faced trying to get help for her daughter with CTV News.
Special to CTVNews.ca
Published Sunday, January 26, 2014 10:10PM EST
My daughter Ann is 15. We started our long journey with her anxiety when she was 11. At that time, all we knew was that she missed a lot of school. She had stomach aches, headaches, and colds that just never went away. She had trouble sleeping, and worried a lot about whether she understood her assignments completely, or what would happen if she missed a class.
She didn’t enjoy school, and although she made friends easily, she seemed to bounce from one close friend to another very quickly. She complained about the boisterous and unruly nature of the classroom, and about the teachers not being willing or able to keep order.
It was another parent who suggested it sounded like anxiety. A family doctor in our group practice concurred. Our own family doctor referred us to a hospital clinic for assessment and support. After waiting eight months, we finally got a formal diagnosis of Generalized Anxiety Disorder, but no support.
The subsequent years have followed a similar path, and in the 3 1/2 years since her diagnosis, Ann has gone from missing school once a week, to avoiding school entirely. In her 1 1/2 years of high school, she has completed two credits instead of the expected 12. She has had seizure-like episodes that required two EEGs and an MRI to rule out neurological issues. She experiences migraines, severe stomach pain, and sleep disturbances that mean she can’t maintain a normal schedule.
Her life has narrowed from days full of school, friends and a myriad of extra-curricular activities, to hiding in her room and only being able to leave the house two or three times a week. Every time she leaves the house, for a rehearsal or a workout or a family celebration, she requires hours of solitude to recover.
I wish we had known at the beginning what we know now. The medical resources available to us through the hospitals are very limited. We have waited months for appointments with psychiatrists only to be told that they don’t have the resources to help Ann. Sometimes it’s because of her age, or because they feel Ann needs ongoing therapy and their system is funded to provide short-term therapy. Many times they suggest medication, and they are very willing to tell our family doctor what to prescribe as long as it moves us out of their office.
I have learned that if you can wait, most hospitals and clinics are happy to spend a few hours with you to do an assessment. We’ve had three formal assessments done through two hospitals, and a third hospital recently offered us a new assessment. Of course, they always tell me what I already know, and they don’t offer us any resources. What they get out of it, though, is research data. Whether it’s a research hospital or a teaching hospital or they just need funding grants, I suspect the data we provide to them is an important part of their mandate.
I do know some parents whose children have benefited from the services provided by the hospital clinics. If you’re very lucky, your child’s needs will correspond with the services they have available. Unfortunately, I know more parents who have experienced frustration than success.
I have also learned that there are a number of private agencies in our city that offer support groups and alternative classrooms for kids who struggle with mental illness. Once again, these haven’t been open to Ann for various reasons: we don’t live in the right area, for example, or their program is geared to kids with substance abuse issues or who are involved in the court system.
Nevertheless, if you have a child who fits the right profile and you can find out about these clinics (there’s no central registry), I urge you to contact them. Many of the intake workers I’ve spoken to sounded genuinely interested in helping me find the right program for Ann.
At this point, however, I’m tired of chasing down leads. I don’t expect help from “the system” any more, and in a way that feels liberating. I have taken back control from the months and years of waiting lists and suggestions that haven’t gotten us any help.
Instead, we have found a private psychotherapist who has a great respect for Ann, and who has gained her respect in return. This therapist isn’t covered by OHIP (which covers psychiatrists) or by our private insurance (which reimburses for clinical psychologists). However, she has great training and many years of experience working with teens, and we can see clearly the benefits.
Ann is happier and more confident after a session with her therapist, and gradually we are getting our family life back. It is a financial burden, and we’ve decided to refinance our home to afford continuing therapy. That was a hard decision to make, but it was harder to have to interrupt the therapy in order to pay our other bills.
To those parents who are out there and struggling with a similar situation, I urge you to talk to everyone you can about your struggle: doctors, teachers, and most especially other parents. There are many teenagers and young adults who are dealing with mental illnesses, and many parents who are experiencing the same frustrations. I know families who are coping with everything from anxiety and depression to bipolar disorder and schizophrenia. I believe these other parents are our best resources. If we are willing to we can support each other, sharing our experiences and telling each other what has helped, whether it’s a clinic or a website or a therapist or a book.
I know our journey isn’t over. But I feel better about it now, knowing that we have taken back control. We’re finally moving forward, not just going in circles.
CTV News has changed the names of the people in this article at the family's request in order to protect their identities.