LESLEY KLEM: So Jack’s pregnancy was always very different, right from the very beginning. Was about 24 weeks, I caught a blood virus and went to the doctor with a raging temperature, and I remember sitting in her office, just crying, which was not like me, because, particularly not in front of professional people. And, it felt like about half an hour, but it was probably about 3 minutes, and I was just sobbing, and eventually, I could gather myself and she asked me why was I feeling so upset? And I said I just felt my baby was threatened, there was something, this was really gonna hurt my baby. And she reassured me and said, “No, no, no, everything’s fine. Just go home, take two panadols, every four hours and stay in bed”. Which I did, but I just had that feeling. He was my fifth pregnancy, I kind of had it together. I knew what was going on. I knew how to calm babies down, even inside me. I was that mother who played the classical music to them and spoke to them. And, the others I could calm them down. But with Jack, he was busy, he was so busy inside me. I felt like I had a rugby team inside there. And, none of that worked with him, but I didn’t think anything of it at the time. I had to get up and literally rock from side to side on my feet was the only way that I could stop my stomach bulging in all sorts of directions.

Anyway, Jack was born. His birth was fine, he was born at home with a midwife. Everybody was present and his cry was completely different. And, again, I remember thinking oh, I haven’t heard that before out of the other four. They had all cried, but Jack’s was just high-pitch, loud and no tone. I didn’t know how to, I just felt that I couldn’t reach him. The things that I had known with the other children, the other babies that had worked, they didn’t seem to work with Jack. I felt my bonding was really quite difficult with him. I didn’t know how to explain it to somebody who would understand. And the only way I could describe it was that it’s as if there was a glass something, a transparent barrier between him and me. I could see him, I just couldn’t reach him. I couldn’t touch him. At about three months old, I thought he’s not hearing well. Everybody said, “No, you’re just worrying for nothing.” it’s just me, the oversensitive mum. And I’m thinking, no, this is my fifth baby. There’s something. Anyway, about six months he got a cold. I used it as an excuse, took him to the GP and said I’m really here about his hearing. I don’t think he’s hearing as well as he should. And so, our pathway of many appointments began.

Jack and I went off to the Swan District Hospital. Two nurses did some more professional tests on him. At least he’s had puppets and we’re in a sound booth and thing’s, quite a few. And we weren’t quite finished, but we were there for a long time and I was standing right close to them with Jack. And they were just chatting to themselves, knowing that I was there, though. And the one said to the other something like, “Oh, this poor kid, seriously, he’s never going to hear anything in his life. He’s just, he’s so deaf.” And that’s how I discovered, or found out that Jack was deaf. Which is not, I’d thought, hearing loss, but I hadn’t expected deaf. And it was as if cold water had just, my whole body just went cold, actually. My heart started racing. And, so, this sudden journey. We were heading down this path, and our life just went in the opposite, unexpected direction as it does. But, in that moment of understanding he can’t hear, all those things that I’ve talked about suddenly made sense to me. Oh that’s why my voice didn’t calm him down. Oh, that’s why I haven’t been able to make that connection. That was then followed up by numerous appointments with ENTs, ear, nose and throat specialists, because they just assume that you will have cochlear implant.

By this stage, he was six months old, we got notified in the post about MRIs we had never agreed to. We thought, a cochlear, it’s my nature to go and investigate things. I have a degree in English Language and linguistics. I knew language, language is the thing he needs, not necessarily speech, they’re completely different things. But, trying to process all these things, trying to process having a deaf child, no deafness in our family, trying to process the complete change in parenting, the sadness of it, the fear of it, the unknown of it was a lot, you’re given a pile of information. Nothing about sign language. And, it just seemed to me that the pros and the cons, I had no peace with it at all. And, I turned to my spiritual life, I prayed a lot about it, and just, there was nothing about a cochlear that I thought, whereas, when I looked at sign language, or language, there was a guarantee. If he is taught a first language, which is every child’s right, he will have a language. His will be different to mine, but I didn’t, you know, that was the path. So, we said, no, there’s no cochlear implant. When I went into the hospital for his final check up, the ENT, it was just me, again, me and Jack and the scientist. And, it was a typical scenario. He told me, it was a male doctor, he told me to sit down. He stood up. And then proceeded to tell me that he really felt that I was being an abusive parent because I was denying Jack the access to technology in a cochlear implant, and do I understand that he’s going to amount to nothing. And that a cochlear implant is really low-risk surgery. The highest risk is the anaesthetist. And, yet, I’m still making this decision. And, I said, yes we are, because he needs a language, not just speech and I’m prepared to go this route. And I left there in tears and quite shaken by that whole experience.

So, we went home and I just started doing things more visually. I raised his four siblings before him on the bench top in the kitchen. Same as Jack. Lots of pointing, I learned some Makaton key word signs to point out things to him. His very first sign that he actually signed was very cute. And, it was duck. We were walking around the park and it’s duck, and that was his first sign that I taught him. And, when he did that, and he did it quite quickly, it was, ah, honestly it was, it was almost of a more, it was a happier moment than his first word. And then, at about 18 months, we ran into trouble, because I had no, how do you explain abstract time to him? And, again, I thought oh, I can’t get through this barrier. I don’t know how to tell him in an hour’s time we’re going, or even about love. I can show him that I love him, but I don’t know how to tell him that I love him. I don’t know, well, all of those abstract things.

As a Christian family, we prayed and said grace and I didn’t know how to go into the concept of God with him. You can’t see, you can’t point, There’s God. So, play group was, yeah, really really, really good. I can’t empathize how much that changed. And, Jack was just a sponge. And I fell in love with the language then. Watching people sign, watching them tell their stories, the facial expressions, the everything. And, quite frankly, I came to the conclusion that hearing people are quite boring. We just talk, we’re not apt to great emotion. Whereas, when you see deaf people signing, everything’s out there. I really fell in love with the language. I think, for me, the emotional impact of deafness is ongoing and it catches me at strange times watching him. It’s very isolating, the language issue. And, it’s a very lonely thing to have and it’s an invisible, I don’t even want to call it a disability, because I don’t really believe it’s a disability. It’s just an inability, rather.

But, Jack will often, if we’re visiting friends, and there’s only so much interpreting that you can do in a normal conversation, and everytime Jack will end up wandering off on his own because he can’t access the conversation. Same thing at school as he’s gotten older, it’s a lonely thing, actually, and that, as a mum, to watch that, I find it really difficult. And it’s hard, ‘cause I see that loneliness. I see that rejection. And, at home, he’s frustrated a lot by it as well, even though we try, and I can understand that. It must be difficult, not having access. And, I had a taste of it way back when he was little. We went to a programme called LEAP, which is Language Early Acquisition Programme. It was run by the Deaf Society. A lovely deaf woman, Jen, got the deaf children together, and the mums would go off for coffee. So, I was the only hearing mum with four or five deaf mums, who are all great friends of mine now. But I had no idea what they were talking about in those coffee sessions in the beginning, and I learned more and more and more. We went every week.

But I remember sitting there thinking, this is really difficult. I’m trying to guess what they’re saying. I found it mentally quite draining. I would often feel stupid because I hadn’t grasped the conversation. And it made me realize this is my life for an hour once a week. This is their life for the 23 hours of the rest of the week for a lot of them in this world where you constantly see people talking, but you don’t know what they’re talking about. When Jack was about nine, he really wanted a cochlear, and he asked us for about a year because two of his best deaf friends had got cochlear’s. And we had to answer the question of, If Jack asks us at 18. “ Why didn’t you ever give technology a chance?” “ Why didn’t you let me try, maybe it would’ve worked ”. What would we say?

So, we thought, it’s just another tool to help him through the world. And then, he had the second implant, and he didn’t like it. It was just too much, and then he decided he didn’t want them at all. The government is amazing with the support they give, but, again, they were happy to, that whole programme, per cochlear with the speech therapy and all the therapy that goes with it, that whole package deal is about $50,000 per cochlear.

And, all these years, I couldn’t even get $300 for somebody to teach us sign language. It’s just, it’s quite bizarre. But, when we went to PMH, and I thought it was really important for Jack to give his feedback and I was really proud of him, actually, that he could process and understand, but what he told them was that, when he has he cochlear, he doesn’t want his cochlear, not because it doesn’t give him access to sound, because there was nothing wrong with the technology, and it did exactly what it’s designed to do, which is amazing. It gave a very deaf person access into conversation if the room’s quiet and the people are looking at you, all those things, but it did, but it changed his personal identity, and it made him feel like a broken hearing person as opposed to just a normal deaf person. In his way of expressing it, he said, “ Look, I just feel like a big pair of ears. ”

So, the cochlear’s are aside, Jack has now gone into high school, at Shenton College for Deaf Education. I would love, No I wouldn’t love to actually meet that ENT again, but we have proved him wrong, because you can never fail with a language. And, Jack is a confident, Happy deaf child, young man in year seven now. It’s been exhausting, it’s been amazing, it’s been exhilarating, it’s been heartbreaking, but at the end of the day I wouldn’t change anything, And I would never regret it because I think, after all that we’ve given Jack, with the fighting for access and the constant advocacy, and trying to give him access to the world and the support that he needs, he has made us as a family and me as a person, as a mother, as a woman, more compassionate, more empathetic, more understanding. I’ve had to face prejudices that I didn’t even know were there. Essentially, my son was the very first deaf person that I’d really met properly, which is quite an experience in itself. We live and learn. That’s how we go.