Associate Professor Anita Gibbs, social worker and mother of Dima, says:
Well, kia ora koutou, I'm Anita Gibbs, I'm currently in New Zealand and I'm going to be sharing some reflections on being both a caregiver and a professional around issues to do with diagnosis and the benefits of diagnosis, and my son Dima will be joining me a little bit later to tell you a little bit about himself and what diagnosis has meant to him.
I guess at the outset I would say that I'm definitely a fan of getting a diagnosis, because prior to getting a diagnosis we really weren't able to get as much support and help as we needed even though we knew that Dima would almost certainly have fetal alcohol spectrum disorder.
We adopted him from Russia in 2007, and it was a long journey, all sorts of things, challenges and situations where we needed to get a little bit of help and we found that we weren't getting help and we were seeking to get a diagnosis confirmed for him, to try and get more helps and services. So we found ourselves in situations where we were getting gatekept because we didn't meet any criteria, it was always, "well, possibly, possibly."
We did have an awesome paediatrician who was willing to go out on a limb and say, yep, this looks like FASD to me, and he was able to recommend a few extra assessments for us, but we couldn't get the full sort of neurocognitive battery of tests that we really needed to look at those brain domains. And as a professional qualified social worker, I was really aware of the need to get the full diagnosis, or at least to get the story of what was going on for our son in terms of his educational needs, his social needs, his harm impulsivity needs, things that were going on for him, his sensory needs.
We knew that life was a challenge, so it was a bit of a journey - and he'll tell you a little bit of how he came to being properly diagnosed - but essentially we ended up going through the justice system to get a full diagnosis.
And the benefits of that, to be honest, through that process of being interviewed ourselves, of seeing him get a fuller assessment through, spending time with Dr Valerie McGinn and then sharing that with other professionals have been huge. That happened in 2018, when he was about 14, even though we'd had some pre-diagnosis before that, of ADHD in particular, but since we've been able to get that diagnosis, we've been able to get a greater range of services and supports, and been able to access funding that we couldn't access before.
Prior to diagnosis, people wouldn't believe us, in terms of some of the issues we were saying, could we have help with this please. As soon as we got diagnosis people said, well, we can see, that the brain domain impacts are fairly substantial and therefore we can look at, and help you on what's going on in terms of self-control, in terms of reasoning age especially, how can we actually work with Dima in a more appropriate way to help him at the age that he's at, rather than the chronological age of 14, a reasoning age of maybe seven to nine, how can we help support him better because we understand that brain domain is challenged, shall we say.
So we were able to use the results, social workers helping us and occupational therapists, we were able to use those results to to get more resources for Dima, as well as to actually say hey, this is what it is,this is what it is, and this is the way that you will need to work with our son so that we can see a difference, you can work with him in this way, a FASD-informed way.
So we did use the diagnosis in that way and we found in that respect it's been helpful.
It doesn't always open the path to getting services but I believe that it really does open the path to help people explain better what's going on for their own brain, and we've been able to do a lot of conversational work with Dima to help him understand better what's happening with his brain so he then explains that really well to others and asks for help; so, I hope that when you listen to him in a minute or so that you'll realise that there are definite benefits to getting a diagnosis even though FASD is a complex disability. It enables us to all talk about it in the same way and to work as teams in order to support our kids and to give them the best chance at life and the best chance of flourishing.
So thank you for watching this podcast and I hope to be available to answer questions later.
[Break in recording, Dima joins Anita]
ANITA: Well hello everyone, I'm Anita Gibbs, I'm from the University of Otago and I'm Dima's mum, and Dima is here with me today and we're just going to chat about the benefits of getting a diagnosis for fetal alcohol spectrum disorder - so hi.
DIMA: Hi, I'm Dima Gibbs, I was born in 2004 in Russia, St Petersburg, and I was adopted in 2007 by my two lovely parents and sister.
ANITA: Cool, Dima. So, Dima, what sort of things do you like doing? What's what's your thing?
DIMA: My thing is that I like fashion design, I love technology, and I love tinkering with technology and stuff like that, so yeah.
ANITA: And anything else that you're into?
DIMA: Oh, schoolwork and NCEA level one and stuff like that, so yeah.
ANITA: What about cars, are you into cars?
DIMA: Yes I am yeah, I love my cars, I love German cars especially, so Volkswagens and stuff like that, so yeah.
ANITA: Cool. So today, Dima, I'm going to ask you a couple of questions about, going back a few years, because you're 16 now, so do you remember where you were when you got your diagnosis for FASD?
DIMA: I was in a youth justice residence in Christchurch next to Rolleston Men's Prison in Rolleston, this was 2018, and I was assessed by… Dr Valerie McGinn, and it took about six weeks because I was waiting for about four weeks for her to get down from Auckland, and then I got my assessment, and yeah.
ANITA: So can you remember, because you you had to wait in the youth justice centre, didn't you, to get that assessment, and Valerie came down, so can you remember what that was like, I mean, what did she do?
DIMA: Well, the assessment was- is that she just made me do some puzzles, asked me questions, did some, tech sheets like, question sheets and stuff like that and a lot of different stuff which was a bit out of the ordinary but it was- well, she tried to make it fun, but it was very stressful at the same time.
ANITA: Yeah, yeah, so it was a bit stressful because I think it was like quite a lot of work and it was very tiring, wasn't it?
DIMA: Yeah, yeah.
ANITA: And then obviously she was able to write a report and that went to court, but the report was really extensive, and it had loads and loads of information in it which was awesome, because that enabled us all to see what was going on, but for you, how did you feel when you knew you had FASD?
DIMA: Oh, well, it was... It was a bit hard to, like, get my head around because I didn't know- the only thing I knew about it was that it's lifelong, so it was… yeah, but otherwise I coped with it and stuff like that, and eventually it's like oh yeah, I have to live with it, yeah.
ANITA: So what help have you had then, since getting that diagnosis or since that report?
DIMA: Oh, I've had lots of help, so I've had help from, an organisation called THO... and from a lovely lady called Lashana and some other people and that was about three years of support, I've also had support from CBCT, which is Corstorphine Baptist Community Trust, and also CCT, Community Care Trust with my living arrangements, and Mount Cargill Trust which is also with my living arrangements so social workers and stuff like that and, yeah.
ANITA: Yeah, having a diagnosis and a report has enabled you to access quite a bit of extra help, hasn't it?
DIMA: Yes, it has, yeah, it really has, and also I've had teacher aides in the past and stuff like that that's been really, really good.
ANITA: Yeah, so for you, getting that diagnosis kind of opened a lot of doors, didn't it, to get some extra help, because mum and dad were always asking for help but they didn't get as much help as they felt they needed just to make your life more manageable, and actually for you to have a good life.
DIMA: Yeah, yep.
ANITA: How do you now feel about having a diagnosis of FASD? Because obviously you're quite aware of having that kind of lifelong disability and brain injury, and it goes with ADHD as well, how do you feel about that, because sometimes it can be a bit tricky?
DIMA: Well, it's like some days I'm living in a bit of a blur, it's really like I can't- I can't- sometimes I can't concentrate, sometimes I can't do much and like I just can't be bothered doing anything really some days, but it's like I'm aware and I'm OK with living with it but it's- it's like a challenge most days, you've got to take each day as it comes because it's challenging.
ANITA: Yeah. It is, it is challenging. Is there anything else you want to say to the folks that we're chatting to on the digital space at all, before we finish?
DIMA: Yes, yeah, so if you have a child with FASD try to get as much support for them as possible because it really does benefit you, well, and me, I guess, because it has for me in the past and it does now, so yeah, because I got a specialised schooling placement which is good, so yeah, through Kingsley which is an OT school?
ANITA: Yeah, Ministry of Education.
DIMA: Yeah, Ministry of Education OT sort of situation, but it's really cool when they're helping me with my NCEA level stuff, but just as much support as possible would be good for the children with FASD, because they need it, yeah.
ANITA: Cool, well, thanks ever so much, Dima
DIMA: That's OK.
ANITA: Well done.