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.
Not anymore.
i can feel your frustration oozing through the keyboard over here! i've discovered a friend here is having similar troubles with her child and since i don't know how else to help, i am hoping i can just listen to her and be a shoulder for her.
reading all these posts on these learning and personal challenges is helping me open my eyes more to what may be going on with some of my kids' friends. years ago, who knows? i might have said they're "bad" kids but now with the stories you and chantel are sharing i'm learning so much more about your awesome kids.
thank you for letting us in.
Thanks, Julie. Yes, that's where a lot of my pain comes from...feeling judged for having "the bad kid" or whatever. A number of years ago when I was expressing my worry about my daughter's behaviour a "friend" remarked, "wait a minute? Who's the parent here?"
That was one of the most hurtful and judgemental comments ever. Falls into the category of all the unsolicited advice I got about tough love. What people don't understand is that tough love doesn't work for most kids with mental illness. What does work is supporting them with EMPATHY and CONNECTION/ATTACHMENT. If you take a tough line with vulnerable children suffering from mental illness (who already suffer from a poorly-developed sense of self and very low self-esteem) you may well push them into self-harming behaviours and suicidal ideation/behaviour.
Awareness really is the answer, I think. One of the most helpful things I've learned along this journey is that all behaviour has meaning. It's our job as grownups to figure out what our children's behaviour means. The hard part is that some children (often the ones with mental illness) send messages about their emotional needs through extremely disruptive behaviours. Understanding that these behaviours are really messages from a very troubled child instead of the manifestation of "bad" parenting goes a long way.
Gosh, Kath... I don't even know what to say. What a huge ordeal this must be to deal with - sounds so scary and trying. I know she has a father, but not having a partner under the same roof as you must also be rather... exhausting. But I'm so glad you're sharing this.
I wish I had some advice or resources to share, but sounds like your stance of putting yourself back in the driver's seat on this thing has got to be more effective - certainly considering how things have been for the last nine months or so. I hope you get better services and the help you need. Man... I send you all the love and strength I have, woman. Hang in there!! xox
Thanks Tracey - it's nice to have someone 'listen' and support. That helps more than you know.
WOW! Just WOW! I feel like I need to respond to this, to show you some more support, even though I don't know you in person (only read your blog on here).
Know that I'm sending you good vibes for finding the help and support your daughter and family need.
Hugs!
Thanks snikks! As I said, support and awareness go a long way :)
Sara, thanks for your support (and for the link you sent me yesterday). It feels better to have (at least figuratively) taken some measure of control back into my own hands.
Yes Margot, exactly! I would walk into every appointment, cap in hand and touching my forelock to these "experts". Finally I had enough! Last time I spoke with one of them I used the phrase, "I'm tired of being treated like an idiot. Please don't waste my time by spending 25 minutes explaining to me why it's important for my child to go to school every day. If I didn't understand that, I wouldn't have been fighting for help for the past seven years!" I think I shocked her a bit, but damn...it felt good!
Mahjabeen, it's so comforting to know that others are/have been through it too. Also good to know there is light at the end of the tunnel!
Kath I read this yesterday and have been thinking about it ever since. Like snikks I just don't know the words. What a hard road you've been on lately. I too wish I had words of wisdom but all I'll say is good for you for having enough and taking back control. Your girls are lucky to have you as their fearless defender!
Kath, I find that the "good little Canadian" in me wants to follow the advice of the authority in most situations, especially when it comes to my children. Pediatricians, teachers, principals, guidance counselors, etc.; I feel that at times I have deferred to them all. The most important thing is that YOU are the authority on your daughter as a whole human being, so taking back the power that you have as her mother is essential. I love that you wrote this, as it must have been hard to do, but you never know how many people you are going to give the strength to do as you have done & be the absolute advocate for your child. Thank you so much.
This is emotionally moving...and extremely well articulated. I can totally relate to your struggles and understand your need to "take back the power" as I have been down the same route 25 years ago. It was a daunting task, faced many challenges like you but was worth it as I did achieve success.
I am wondering if your daughter has been diagnosed with a learning disability too. Many conditions are comorbid and are result of secondary manifestations.
If you need to talk more please feel free to contact me at mahjabeen.sadik@gmail.com
Thanks everyone. I needed to take a week to let the intensity of my emotions around this topic cool off a bit, and now I feel more like I can respond to your supportive comments. Here I go - let the commenting love begin :)