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All is not lost: The art of living with hope - Mrs Claire Gyde

James Lush, MC, says:

I'm going to introduce you now to the chairperson, of New Zealand's National FASD support group, FASD-CAN Incorporated. This organisation was established in 2013 by a small group of professionals and parents raising and working with children with Fetal Alcohol Spectrum Disorders. Claire Gyde regularly speaks at public events to raise awareness of this very real disability in the hope that FASD is recognised and accommodated by education, health, justice, and the broader community. Please make her welcome. She's going to talk about “All is not lost: The art of living with hope”.

[audience applauds]

Mrs Claire Gyde, of FASD-CAN Incorporated, says:

[Maori welcome to Country]

So I acknowledged the ancestors of this land, and thank you all for inviting me here to share my story.

I'm lucky enough to live directly under the magnificent Mount Taranaki that you see there. And the river that flows from it, The Waiwhakaiho, runs right past my back door and through to the city of New Plymouth. It's truly a very beautiful place to live. Now I'm not sure how I go next. Ah. Here we go.

So yes, I'm Claire Gyde, and I'm the founding chairperson of FASD-CAN, New Zealand's national support network for families living with, Fetal Alcohol Spectrum Disorder. So my presentation to you today is perhaps the most unscientific you are going to hear. Because really it's just a collection of stories.

The first is setting the scene and it's going to paint a picture for you of the early years with our son. The second is going to let you get a feel for the discrimination and intolerance that often goes hand in hand with disability. The third is going to shine a light on the benefit of diagnosis. And the fourth is going to reframe, FASD for you and hopefully provide some hope.

So this is Jacob and these stories are going to take you from this gorgeous sweet boy on the left of the screen through to the now 21-year-old on the right. You know with the beauty of hindsight, I can tell you that school was when we first started to see issues with Jacob and really not until he reached intermediate. I say, primary school had a few blips, intermediate was explosive, but high school was just nuclear.

His first day at intermediate was nerve-wracking. He felt sick in the car on the way to school. And as we walked through the gates, he said, "I don't know about this." And I told him he would be just fine. And he said, "How could you possibly know that?" Well, little did I know, it was actually going to be, one of the worst decisions I could have made. He had lost the security of his small country school and he was gobbled up by a big school where nobody really seemed to care. He began to get into trouble almost immediately for bullying and defiant behaviour. He also began a pattern of being sick and needing time off school. We went backwards and forwards to our GP who assured us it was just normal teenage angst. But Jacob had begun chewing his fingernails until his fingers bled. So I went to all the parent teacher interviews. And when I suggested that I was worried about his basic reading, writing, and maths I was told it was a boy thing and that he was going to be okay and I should not worry. But as school reports read that he was more than capable but he needed to work on his planning and his time management, if he was going to achieve.

You know, on the last day of intermediate after the final bell had rung, he waited for a boy and who had been in his class to leave the classroom and he punched him hard and in the head. When I spoke to him about the incident and asked him why he had attacked this boy, he said to me, "You get told every day for a year that you're dumb and see what you do." Well, I phoned the other boy's mother to check that her son was okay. And I sucked up the verbal abuse that she dealt me. She then said that she had filed a complaint with the police. It was to be Jacob's first brush with the law. The incident was resolved quite quickly with an apology letter, but still Jacob did not seem to understand that what he had done was wrong. I guess in his mind, he had simply dealt with the cause of his pain and didn't quite know what all the fuss was about.

High school was where our journey of discovery really began. We noticed almost immediately that Jacob's anxiety levels had increased. He continued to chew his nails, increased fidgeting and rapid eye movements, were all signs that he was stressed. He did no homework. And when prompted responded with abuse. Nothing we did or said made any difference.

There was trouble at school and it was escalating. He was stood down for fighting and swearing. So he was getting detentions on a daily basis for not completing his work. And he was sent out of class for being disruptive. I requested a meeting with the principal and I took Jacob's books to show him there was virtually nothing written in them.

The principal suggested that we call Jacob into the meeting. So he arrived and I could tell he was obviously nervous, but he said and he spoke in his normal articulate, polite manner. The principal asked Jacob directly what he was going to do to improve his schoolwork. Well, Jacob had all the answers, you know he was going to listen and he was going to concentrate and yes, sir, "I'm gonna complete all of my work on time." He was then dismissed from the meeting. He stood and he shook the principal's hand. And he said, "Thank you, sir." And he left. And with a look of superiority that principal turned to me and he said, "He will do just fine." "He shakes it, he looks at me in the eye when he shakes his hand." So it seems at an all boys school that was more important than reading, writing, and maths.

However, by the end of the second term many detentions later, Jacob's Dean wrote in his report, "There are some real concerns here, school students should not be silly and they need to be socially isolated, improvements are required."

At home he was beginning to get more and more out of control. He'd been in more trouble with the police for some vandalism and some fraud. He had stolen money off both his nana and his auntie. Arguments were escalating and he began to take his aggression out on things around him. Many holes were punched and kicked into our walls. He tore up his school uniform all his school books and snapped his pens and pencils in half. He was having trouble sleeping. And he began to have paranoid thoughts that his father was trying to murder him.

So after one argument, one night I went into his room to try and smooth things over. And he was sitting on the edge of his bed and without looking up he said, "Mum, I am broken and you can't fix me. I want to kill myself." So that was a fairly tough time. And I can tell you I've wept a lot of tears. And I think that really sent us on our pathway to diagnosis. Of course, we now know that these symptoms, oh, sorry I haven't clicked enough. These symptoms are the primary and the secondary symptoms of FASD.

So Jacob was 14 when we finally knew that there was a reason for what we were seeing. It was Fetal Alcohol Spectrum Disorder. So with diagnosis in hand, we changed schools and we began to hope for positive change. However, I've learned that discrimination and intolerance often go hand in hand with disability, and we have experienced many examples. But perhaps the worst has been within the education sector. As parents, we're often criticised by the school management and by teachers. We were told that Jacob was just a very naughty boy and that his behaviours were entrenched. We were advised to take parenting courses. We were told that that the school felt that it would actually be best for everyone if we just took him somewhere else. We were told that we were over-protective and that we were stifling our son and one teacher used the analogy of the eagle story. He said, "You know the one. Take him to the edge of the cliff, gently push and watch him fly." Well, I responded to this by writing my own eagle story. And it goes like this.

They took him to the edge of the cliff, they gently pushed and they watched in horror as he fell to the ground. They did not realise that he had a small fracture in his wing. They couldn't see it because it wasn't visible. They then spent the next two years putting him back together, teaching him to walk, talk, smile, laugh and hope. Slowly, they made their way to the clifftop once more. This time they sat, and they sat, and they sat they were patient and wise in the knowledge that he would step off that cliff on his own when he was ready. They would keep him warm, safe, and secure while they waited and simply enjoyed the view. When he does feel ready to take that step they will not watch from on high but they will look from below and be ready to catch him, should he fall.

Now, since writing that several years ago, he has jumped off the cliff with reckless abandon. And I have found that I can build ledges quite quickly for him to fall on to. And sadly, there have been a couple of incidences where he's hit the bottom and we're just in a phase of starting our climb again. So the moral of that story, I guess, is if you have the opportunity to work with a parent of a child with FASD, make sure your contribution is a positive one. Before making comment or passing judgement reflect on where these parents may have been. They may have already been at the bottom of the cliff and they have worked very hard to start the climb again. I think you need to respect that these parents come with the wisdom that only experience can bring. Listen to them, make allowances for their grief and suffering and acknowledge that they are actually in this thing forever, long after the health and education professionals have passed through their lives. It is these parents who will continue to provide, protect and pick up the pieces.

So you're probably thinking if that's the treatment post-diagnosis, what on earth is the point. However, there's plenty to celebrate in receiving diagnosis. The first feeling I had was an overwhelming sense of relief. The day we received diagnosis, we also received confirmation that we were not the world's worst parents. We could release some of that burden and we could breathe again. They were feelings of guilt that we had taken so long to really understand what was going on with our son. And as a result, we had blamed him and punished him for something that we now know he had no control over. Diagnosis, then, sent us on a learning journey. And we learned that FASD is as complex as it is individual. With diagnosis, we knew that we needed to make changes and this little video clip which I hope I can somehow get to go explains that a little bit better than I can.

Video playing:

[water splashing] [dramatic music]

American man: Again, this is the USS Montana requesting that you immediately divert your course 15 degrees to the north to avoid a collision, over.

Irish man: Please hold your course 15 degrees to the south to avoid collision.

American man: This is Captain Hancock, you will divert your course, over.

Irish man: Negative Captain, I'm not moving anything, change your course, over.

American man: Sir, this is the USS Montana, the second largest vessel in the North Atlantic fleet. You will change course 15 degrees north or I will be forced to take measures to ensure the safety of this ship, over.

Irish man: This is a lighthouse mate! It's your call.

[video ends] [participants laughing]

Mrs Claire Gyde says:

A good little bit of Irish humour there. So what we learned from that of course, is that we needed to change course. And we had to recognise that our son is the lighthouse. He is unable to move and unable to change. So it's up to us to move and change around him. With the knowledge that diagnosis provided, we now actually had the power to change and improve all of our lives.

You know, I was recently at the emergency doctor with Jacob after he suffered an anxiety attack. And when he was asked if he was on any medication or had a medical history to disclose he told them exactly the medication he was on. He told them he suffered from depression and that he had FASD. He then stopped because this doctor had stopped writing. And he said, "Are you going to write that down?" And he said, "Because do you not know what it is?" [chuckles] And the doctor said, "Yes, I do know what it is.” And he said, "Well, I think you should write it down." So it's not something he's ashamed of. He knows he is different but perhaps more importantly, he knows why. So having that reason, I think helps him to come to terms with some of the challenges he faces and having that reason helps us understand too, that when things go wrong which they invariably do, it gives us a different perspective. And it enables us to be supportive rather than reactionary. With support and understanding there is hope. But first you need to know what you're dealing with. Being empowered to do better is simply the beauty of diagnosis.

So time marched on, Jacob left school with no qualifications. When he turned 16, it was the age of synthetic weed. And that coupled with magic mushrooms continued to fuel many violent outbursts in our home. It also drove him to steal from us virtually on a daily basis. So life felt pretty hopeless actually. And I would lie in bed at night, waiting for the knock at the door that would tell me he was either locked up or dead. So how do we move through such despair? How do we dare hope? How can we help ourselves be more positive about FASD? Now, I'm not going to presume to tell you what to do but I'm going to tell you what's worked for us. And, you know, everyone will have their own way of getting through this, but this is our way.

First, it was important for us to redefine what success looked like. Secondly, we actively look for the magic in every single day, and thirdly, we've reframed FASD. It's been important for me to not chase someone else's definition of success. I needed to define my own. And over the last three years or so, there have been plenty of successes worthy of celebration. He managed to hold down a job for almost four years. And he gained qualifications through workplace development. He persevered like an absolute pro and on his 10th attempt, he passed his learner's licence. And he now has both his motorbike and car licences. He is most recently aware of his addiction issues and tentatively just now he is starting to reach out for help. It's a kind of two steps forward, one step back process. So we are in the throws of doing that dance at the moment. And of course it's lots of other little, everyday examples of success. You know, he borrowed $20 from me a couple of weeks ago and he actually paid it back.

And then there's the really, really big successes. You know, we've maintained a loving relationship with him and the face of some extreme events in adversity. We are still his go-to people and we are still his safe place to fall. And finally, of course the biggest success is that we don't need to visit him in the cemetery.

So you know, we don't always know where our kids are going to find their voice, their song, but I think we are obliged to find opportunities for them to have some positive life experiences. We are obliged to look for the magic and I mean, actively and consciously look for it and not only look for it but see it, understand it, acknowledge it. Magical moments are actually everywhere when you look for them like having a laugh as he sides with his dad to poke fun at me. The rare moments when he sits at the piano and he bangs out the one tune, he has memorised with an absolute passion. And then when he's out for a night and I get a text that suddenly says, night-night mum, love you.

So we focus on what he can do, not what he can't do. And for us, part of that is recognising his talent for photography. He is absolutely at his best when he is doing this. So much like this collage, I have created my own wall of hope at home, and I have his photos printed onto canvas and I've dedicated a wall to display them. It is a visual reminder to me of his magic. And I think it is for him as well.

Finally, reframing FASD. You know we take the time to enjoy our son for the beautiful human being that he is, quirks and all. Reframing FASD is understanding that all of this is about changing us. It's about changing how we think and feel about FASD. It is not about fixing him. He's a lighthouse.

So a few years ago, I put together this little video and I do apologise to those of you who have already seen it, but it's important to me. And it has been important in the reframing exercise for our family. So it is how we view FASD in our family and we've reframed it to make sure that we are all able to be the best we can be.

Video montage of photos with instrumental music plays.

[audience applauds]