The Blame Game
Once you know that your child has some sort of difficulty or challenge, no assessment or evaluation will ever feel the same way again. You will never see it in the same light as you did before and you will now experience emotions on a spectrum ranging from anxious anticipation to utter dread. You will move mountains to accommodate the appointments you are allocated and you won’t realise how much you’ve been holding your breath until it is over. You will try not to think about how they will see your child or what they will find (or not find) and you will try not to let your child see your worry. You will learn how to prepare your child without scaring them and how to swallow your own fear when you drop them off. You will answer the same questions on an infinite loop – about your pregnancy and their birth history; about when you realised certain milestones were delayed; about what you did and when you did it and how you did it. You will see through the polite professional demeanours and endless questionnaires and understand that all they really want to know from you is what went wrong (and why); when you realised it and what you did about it. You will feel raw and vulnerable and exposed, but you will gulp down the tears and push down your feelings so that you too respond with a polite demeanour that conceals the depths of your pain and guilt. You will listen to yourself explaining to perfect strangers how you overheard the doctor saying something during delivery about “placental insufficiency” and that “yes, N is still an only child”. Only when you are alone late at night or in your car, will you give yourself permission to feel it. You will cry it out (again) and then you will carry on until the next time. I don’t know which is harder – waiting for the assessment or waiting for the results / feedback. The feedback requires the art of multitasking like nothing else. You will be required to listen, understand, take notes and ask the right questions; all while concentrating on managing your reactions and emotions. It is exhausting to the core. Again, when you are alone late at night or in your car, you will have the space and time to process everything that was said to you; everything that was said about the person you love the most in this world. I honestly feel like it cracks open my soul every single time. So far, it hasn’t gotten any easier and I am 3 years in. Each word said, that tells you that life is going to be just that bit harder for your child than many others, leaves another little scar on your heart.
Regardless of what is asked or said by the assessor, nobody is judging you more harshly in that moment than yourself. You are answering questions that you have asked yourself a million times in a million ways. Questions you have no good answers to and that cut like a knife’s edge every time. Questions that you will probably never stop asking yourself or thinking about at every new juncture on your child’s path.
While I do understand the need for as much information as possible about my child and his development and his environment, I still fail to see the full relevance of certain questions I have answered about whether he was a planned pregnancy and for long we had been married when he was conceived. There is such a fine line between being thorough and being invasive. The mother of a child with difficulties already feels on the back foot in every appointment. I would love to know if the horrid combination of guilt, shame, anxiety and fear ever shifts balance, changes or lessens.
The therapist in me can rationalise the exposing nature of the interview and assessment experience, while the mother in me wishes people would consider their words more carefully. Rephrasing a question can get you the same information in a far gentler manner. There is no question that the years of these experiences have changed the way I assess and interview my own patients and their families. I am not placing my professional skills on any kind of pedestal, but one does need to be cautious about making the patient / family member / parent feel as if you’re aligning blame before you’re out of the starting gate. Take it from me – they don’t need you to play the blame game when they’ve gone 10 rounds before they even walk through your door. Lastly, it is so important to see that this is a marathon and not a sprint. You don’t need to glean every minute detail in one sitting. Create a safe and trusting space with the patient / parents and the whole story will reveal itself to you.