And so our adventure with Charlotte takes a new turn. Yesterday Pete and I went to the second part of her assessment at the FASD clinic in Redhill, after Charlotte (and me) had the first part there last month. It was intense – six hours of answering questions about her abilities and difficulties and behaviours. But worth it.
We emerged with three diagnoses for her, which was more than I had hoped for. I was really impressed with their thoroughness. The results have helped us to feel massive relief (that we weren’t just imagining it or exaggerating) and yes, a bit of vindication after having been fobbed off with ‘all (adopted) children do that’-esque comments from various professionals.
The assessment: Charlotte’s part
Charlotte’s assessment at the clinic looked at various aspects of her cognitive functioning, including her spacial skills, short-term memory, executive function, and language skills. I found it fascinating and could happily have stayed longer to talk to the staff about how it all worked and what they were analysing. It was quite game-based, which worked well – copying patterns, organising things into sequences, following instructions, describing what was happening in pictures, testing visual and aural understanding. I quite wanted to be tested myself. No, really.Charlotte's assessment at the clinic was fascinating. I quite wanted to be tested myself. No, really. Click To Tweet
The assessment: autism
Our part in the assessment yesterday was mainly taken up with completing the DISCO – a very, very long form referred to by the psychologist we were working with as ‘the beast’. It covers all kinds of behaviours – developmental progress at various ages, social skills, numeracy, risk awareness, ability to understand what’s happening in terms of other people’s needs and emotions, understanding of language including idioms and jokes, lots of different stuff. It is extremely thorough. That resulted in the autism diagnosis – it was very clear. How did we miss that? I wasn’t surprised exactly, but it was more a case of ‘Oh, I seeeee…’ things just clicked into place in terms of her behaviours and the meltdowns.
The assessment: ADHD
We also completed another very quick assessment – no more than 10 minutes – in order to get the ADHD diagnosis. That was something that I had casually wondered about but never pursued, so it was really helpful that they did it as a matter of routine and it was so quick. It made us wonder why no one had offered that before, because once they said it, it was blindingly obvious. She can only sit still when she’s in front of a screen, and she can’t concentrate for more than 10 minutes unless it’s an activity she’s chosen herself.
We’d always been told that was a trauma-related issue, but it seems there was more to it than that. I’m so glad to have a label for it, because that (in theory) opens the door for help. If we know what it is, we can work out what she needs us to do about it.We’d always been told that was a trauma-related issue, but it seems there was more to it than that. Click To Tweet
The assessment: pFAS
The original purpose of asking for a referral to the FASD clinic was to have an expert opinion on whether Charlotte had an FASD. I suspected it was ARND, having not noticed any obvious facial features of full FAS. But here’s one of the fab things about the clinic – they used photos of Charlotte (obtained with much bribery on my part after a very firm refusal on hers) and computer facial analysis to measure the facial features and found that she does have them. Along with the behavioural and cognitive analysis they concluded that it is likely she has partial foetal alcohol syndrome (pFAS). The only reason we don’t have a formal diagnosis for that is because Charlotte’s birth mum does not confirm that she drank while pregnant.
The same, but different
In some ways, nothing has changed. Our little girl is still the same person she was at the start of the week. Charlotte is 8 years old. Hilarious. Great at jigsaws. Fearless on climbing frames. Able to rage for two hours about breakfast. Unable to tell the time. Really good at cleaning the bathroom sink. Overwhelmed by the idea of tidying her room unless we break it down into tiny steps and stay in the room with her. Devoted to Nutella.
But in others, I feel as though the diagnosis has turned our understanding of her on its head. We had previously believed all her difficulties and behaviours were a combination of attachment and trauma, with the possibility of FASD. (No one told us about the FASD, I just read about it and it fitted so we investigated.) So. No doubt attachment and trauma play their part, as we have always known, but the whole picture of what is going on in her head is now both more clear and more complicated.
We now need to find out how this affects the way we need to parent her, and what we can do at home and at school to make her life easier. In some ways, with all this new information to find and take in, I feel as though I’ve landed on the moon and I don’t have a map yet.We were previously told it was 'just' attachment and trauma. As of yesterday, we know it's more than that. I feel as though I’ve landed on the moon and I don’t have a map yet. Click To Tweet
All this means that there is more homework to be done. I know a bit about autism but need to learn more; I have done no reading about ADHD, so would like to find some resources; and because we had suspected ARND rather than pFAS, I need to investigate the differences.
I desperately want to give her what she needs and do this well for her. The meltdowns we’ve had lately indicate that she is really struggling with something as yet unidentified and I want to sort it out for her. And of course Charlotte’s diagnoses have raised more questions about Joanna – is she autistic too? (My hunch now is that she probably is.) And so the process starts for her, too – getting the GP to ask the paediatrician to refer her and waiting for the appointment to come through.
In the meantime, if you’ve been here before me, please do share resources that you’ve found helpful so I can start to get my head around this whole new dimension that’s opened up to us.