I haven't written a lot about my daughter's struggle with anxiety and school refusal, partly because it's as much her story to tell as it is mine, and also because...well, to be perfectly honest it's embarrassing. It makes me feel like a bad parent. Like I've failed my daughter and I've failed as a parent - my most important job.
Bottom line: dealing with severe anxiety and school refusal (my daughter has been diagnosed with severe Social Anxiety Disorder and Generalized Anxiety Disorder - along with a few other things) is no easy task for either the child suffering from them or the parents. So in order to help me understand my child and her irrational behaviour, I reached out for help.
I reached out to community agencies. To her teacher, her school's principal, a school board psychologist. I reached out to our family physician, two paediatricians and three psychologists in private practice. In my desperation, I even went to the emergency department at the Children's Hospital where my daughter was evaluated by a psychiatric nurse and a pediatric psychiatrist. Our whole family went to therapy together. I researched the internet and read books until I thought I would go cross-eyed. I despaired of finding help.
Ultimately (actually, five years after my search began) my daughter was referred to a specialized youth and adolescent mental health clinic run by Alberta Health Services. I felt hope for the first time in five years. I thought we had found the holy grail and that my girl would be "fixed". My daughter was evaluated, both parents were interviewed, we filled out lots of paperwork and completed many tests and assessments. For the first time, my daughter was formally diagnosed. We started treatment: weekly cognitive behavioural therapy with a psychologist and a trial of medication (an SSRI often used to treat depression and OCD - also an anxiety disorder). Things seemed to improve. She started (very slowly) returning to school. I was still hopeful. Life was - if not good, then at least better.
And then she regressed. Significantly. And the school refusal was back. And then - paradoxically - the clinic stopped treating her. She missed about 50% of grade six, and is still struggling in grade seven, even after having been placed in a special class for children with severe internalizing disorders in our public school system. And yet my child hasn't seen a psychologist for a counselling session since last June.
And I have completely lost the ability to cope with any of it. To have an atypical child means meetings and doctor's appointments and arguments and advocacy and self-education and taking classes and missing a lot of work and sleepless nights and neglecting your other children and...are you getting some of the picture?
When we were initially referred to the clinic where my daughter is (supposedly) being treated, I was elated. Now I am completely fed up. I'm tired of being told "this is not a one person job - you can't do it all on your own" only to have that supportive statement followed up with "who in your family or neighbours or friends can take your child to school every day?" How about this? NOBODY CAN. I've asked. I've tried it all before. We've danced that dance, and it didn't work...and when I came to see the professionals I was expecting something different.
I'm so tired. I'm tired and I'm fed up with:
- the blame
- the judgements
- the unsolicited advice
- the anxiety itself
So after a week of being overwhelmed and collapsing into tears at the least provocation, I made some decisions. I decided I needed to take the power back: both for myself and for my daughter. From now on, I will not go into meetings and appointments as the humble supplicant I have been to this point. From now on, the decisions and the power will be in MY hands. From now on, I will listen and evaluate but I will TRUST NOONE BUT MYSELF.
Because the bottom line is this: if after more than a year in the 'care' of a team of specialized mental health professionals my daughter has made no progress: something needs to change. (I put the word care in quotations because in truth, my daughter hasn't been to a true counselling session in nine months - doesn't really seem like a lot of 'care' going on there.)
So from now on, I have the power in this relationship. In consultation with her father and also - and this I think is key - with my daughter, I will decide where she goes to school. I will demand that she is given the proper treatment (the gold standard for anxiety and school refusal is, by all accounts, CBT). I will request testing when I feel it's appropriate or necessary. I will not allow myself to be talked out of decisions I feel are best, nor will I allow myself to be patted down, called pessimistic or have my judgement as a parent questioned.