Bit late on the update - I guess I find it hard to make sense of my reactions and emotions for a while after things kick off.
But yes - after a 90min Q&A session with myself and a 30min ADOS assessment with the Kid we had the confirmation that she is in fact on the Autism Spectrum. My reaction at the feedback appointment after the assessment?
"Tell me something I don't already know".
It didn't come as any surprise to me that she was on the spectrum, not after three years solid of reading, learning, practicing and researching as much as I could lay my hands on. I guess it really just confirmed that I am not neurotic, paranoid, trying to find or create something 'wrong' about the kid. It also confirms that the reason her father was the way he was, wasn't because he was broken. There is something in a label that can attribute a different light to the qualities he exhibited. And I wish, with a heavy heart, that I had known before.
Telling the kid was like a wave of relief over the both of us, that in someway, with little steps and a lot of help, she is going to be able to understand herself, and be okay with who she is. Not the confused, anxious child who often can't cope with normal daily life. Someone who can utilise her talents and loves into living a life to suit her. No matter what.
The hardest part of all of this so far is the total lack of understanding from family. I feel like the only way to keep the kid on a level and create a meltdown free life is to block out everyone who can't take the time to understand, or ask questions, or listen. Or even take it upon themselves to learn. This is what makes this journey as a parent lonely - people's judgement, people's assumptions, people's lack of care.
Three years ago, I was made to feel like I was a terrible parent. Like the fact that the kid had an unsettled life early on was to blame for her 'problems'. That was all caused by me. I couldn't parent her properly, I caused the anxiety, I didn't discipline her well enough, I pressured her to achieve more than she was capable off, I was a pushy parent, I was paranoid and trying to blame everything else but me. I almost believed it all. The things that these 'professionals' said to me made me sob. When all I have ever done is fight for the kid to be brought up right and be happy. And it's been such a struggle to do that on my own. But I always have. And she's always achieved highly at school, and is following her passion and talent despite the fact it puts me further into debt every month.
I'm glad I fought to be heard and didn't give in. I'm glad I stood up for her. Because now, maybe we can get the help and support we need. No-one understands that I have this kid that in one moment can need caring for like a toddler (and I have a 27 month old too...), and in the next, can be discussing life, the Universe and everything like a true academic. No-one understands that the tiniest things can scare her so totally. No-one understands how hard it is to know that hugging this kid when she cries will only make it worse for her and as a mother, I have to suppress that instinct. No-one knows that despite the extra care kids on the Autism spectrum require, the less love you'll receive from them in return. The less empathy, the less understanding from them, the less reciprocal maturity as they grow. It's demanding. And lonely. And scary. For both of us.
See now, I can throw books at the kid, we can read and learn together, and hopefully I can help her to relate to other people like her, and help her to understand how to manage in a world that ticks on a different wave length. She seems to have accepted the diagnosis, but sees the label as a disability. I don't read it like that, and I think that'll be our biggest stumbling block, once we're past that I hope she can embrace it instead.
I was given a whole stack of printed/photocopied information leaflets and booklets to do with support services, finances, education plans, charities and so on and so forth after her assessment. I have read through everything, and still feel like we've been sent on our merry way... I kind of wish I could just take her away from the world and parent her perfectly to her needs and instrinsic qualities. But the world doesn't work like that.
SO I guess that's it!! Here's begins our ASD journey proper...!
