The views expressed on EENote: An EENet Blog do not necessarily reflect those of Evidence Exchange Network.
By Claire McConnell
This is my last blog; what I will do is pull together my learnings, from several different perspectives. Most have been mentioned before; I see them as critical in helping both individuals and the system move forward.
1. What doesn’t kill you really does make you stronger. If you had told me seven years ago what was going to happen, I wouldn’t have believed it. But we’ve all grown and become stronger as a result. For myself, I firmly believe that it’s not what happens that is the most important thing: it’s how you handle it. My energy had to go into saving Rachel’s life, and I spent every waking moment doing this, for many months. My husband Kevin, who really knew next to nothing about mental illness and addictions prior to Rachel’s struggles, embraced his new role as supportive parent and spouse, and did everything he could to both help and understand what was going on. He said to me once, “I would have had no clue what to do without you.” To him I say, “we worked together as a team.” He accepted Rachel’s journey to becoming Tim with some concerns but ultimately from a position of love and care for her, and is very proud of his “new” son. Rachel’s twin brother, James, was going through his own journey of adolescent separation from the family unit when everything fell apart – he had just finished his first term at university and was living away from home – and tried to keep his head down, but also reached out with love to his sister. He attended both her graduations from treatment – from Portage Elora and Portage New Brunswick – and spoke very movingly at the New Brunswick graduation, standing up in front of her therapists and peers to say, “having listened to all of you talk about Rachel, I realize that my sister is even more amazing than I had realized.” When he learned about her transition to becoming Tim, he accepted this with no qualms, and I am very proud of him.
2. If you are a parent going through this kind of journey, use all the supports available to you, in whatever way makes sense for you. I was very lucky to have a large circle of friends, all of whom tried, in many different ways, to care for me and help me. There were periods when I could not see people or talk to them personally, but they kept in touch by e-mail. Two deserve special mention. One is Rosaleen, my very good friend from university, who lives in England and who came over to visit for four days during the very difficult times. The other is my friend Julie, who lives next door to me and who I got to know very well. She was available whenever I needed her, and supported us unequivocally. To both Rosaleen and Julie I say, “thank you from the bottom of my heart.”
3. Individual staff – front line, management, physicians, therapists and everyone else who interacts with families – need to carefully examine their attitudes towards families, and make absolutely sure that there is no judgement of parents. Parents are in an impossible position. They are devastated when their child is struggling. They are trying to understand the impossible web of services that make up our “system”; where these services are and how to access them. They feel guilt and pain, and are under enormous stress. They are acutely sensitive to words from the professionals, and need support, not judgment and blame. Individual staff also need to know that they can – with their positive attitudes, caring and compassion – make a huge difference to parents who are struggling. I want to particularly acknowledge three people here. The first is Dr. Laila Jamal, my therapist right from the beginning of this journey, who walked beside me as a guide, and “took the reins” when I could no longer cope. The second is Dr. Krista Lemke, Rachel’s psychiatrist for a short period of time, who not only showed me tremendous compassion and caring but also found Rachel the services she needed when I was completely at a loss as to what to do. The third is Rachel Crothers, Rachel’s worker at Portage New Brunswick. Rachel C earned Rachel M’s trust, and was then able to work with her, and with us as a family, to help us move forward.
4. A few parents with a vision of how things can be better can do extraordinary things. Who would have ever thought that we could have achieved what we did? With passion and focus, we found a sympathetic NDP MPP (Michael Prue), with whom we worked to set up our Day of Action at Queens Park. Through this, we got national media coverage (newspapers, radio and TV); prompted Minister Smitherman to answer questions in the House about the lack of residential treatment services for youth in Ontario; were able to meet with said Minister for an hour to talk about our experiences and our vision of a better system; received funding to set up a website for parents of addicted youth; and helped achieve funding for twenty new treatment beds. Never underestimate the power of those who are directly affected by near tragedy to effect change.
5. There is still no “system of care” for addicted youth. Those parents who are lucky enough to either know people working in the system, to whom they can turn for help, or have money to circumvent waiting lists for publicly funded beds, may get supports and services for their children. The rest are mostly out of luck. And even those who manage to get the treatment for their children will be faced with a disparate array of unconnected organizations, all with the best of intentions but mostly working in silos. This is simply not good enough and needs to change, and I challenge those working for organizations to step forward and actually do something about the woefully inadequate situation in which we find ourselves. Enough reports have been written. We don’t need to kill any more trees. We need leadership and action, and I am not seeing it.
6. Primary care needs to step up to the plate and work with addictions to ensure that, when parents of addicted youth arrive in their GPs’ offices, the GPs know enough to provide on the spot help, and linkages to the resources that do exist. I have heard too many stories from parents who turned to their primary care providers and were not helped, leaving the children to slide further into the spiral of addiction, and the parents, to flounder.
7. Transgendered people need to be afforded the same rights, dignity and respect that we afford to any group. Tim is my son; he is the same wonderful person inside as he was when she was Rachel. Transgendered people like Tim need the same access to care and treatment as anybody else; they need to be understood, supported and helped. I would like to congratulate Hope Place (a residential addiction treatment program for adults in the Mississauga Halton Local Health Integration Network) for their extremely progressive policies and procedures on working with transgendered people, and challenge other addiction organizations to follow their lead. In addition, I would like to applaud Cheri DiNovo, MPP for High Park-Parkdale, for having introduced the private members bill to have the Human Rights code amended to add the terms “gender identity” and “gender expression” to prevent discrimination against transgendered people; Cheri fought tenaciously for this.
Finally, I must say to my son Tim, “I am so proud of you. You are now the person you were always meant to be. You deserve the very best life has to offer. I am privileged to be your mother.”
Thanks to everyone for reading! Please do feel free to contact me if you wish – I would love to hear your thoughts, questions, insights. My e-mail is clairem1 [at] sympatico [dot] ca. And thanks so much to EENet, and to Jason, their very smart editor, who made my writings better than they were without him.
CLAIRE MCCONNELL has worked in mental health and addictions for many years and now runs her own consulting business. Her understanding of how the system works was significantly challenged by her experience as a parent of a youth with a major concurrent disorder and “gender identity disorder”. In her non-work time she follows her English football team, Chelsea, with passion.