I spoke to Melanie about being a mother to two children. Her son, Arlo, is seven and has cerebral palsy. Melanie is a journalist and in the last few years has written a book about the early years of being a parent of a disabled child and launched a beautiful magazine about tube feeding, amongst other work.
My son, Ben, is 13 and I knew very little about disabled people or parenting when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about people with similar lives and I hope you might too!
Tell us a bit about your family.
There’s me and my partner Rowan. I’m a writer and we live in the southern highlands of New South Wales in Australia, south of Sydney. We live with our two kids – Arlo is seven and Odette (Odie) is five. Arlo has quadriplegic cerebral palsy and that’s what brought us into the disability space and got me working and advocating in this area.
Tell us a bit about Arlo. What does he love?
Arlo has loads of hobbies and passions. He’s always been really into music and books. He loves Julia Donaldson, anything that’s rhymey and rhythmical, watching Disney movies and Bluey. He adores music and likes Rowan playing guitar. He’s into people, loves his family, has tons of friends. He’s been in mainstream childcare and school settings his whole life. He’s now at our local school with his sister, where he’s got one-on-one support throughout the day.
He has always made friends easily. He shares in-jokes, laughs a lot. He’s non-speaking but is very expressive. We’re really working on him talking using his eyes with his AAC eye gaze communication device, which is tricky but he can do it. He’s cheeky – he’ll mainly say ‘Play game, play game’. Unless he’s really sick, and sometimes even when he is, he’s pretty happy. He has his moments – he gets a bit shitty with his sister sometimes, though that happens less since she started at his school. She really speaks his language and they like the same movies and music. Arlo has therapies: speech, physio, OT every week after school, so he’s super busy. He takes it all in his stride.
How did you get Arlo’s diagnosis of cerebral palsy?
It was four days past his due date and had been a pretty ordinary pregnancy up to then. His movements felt different so we went in to the hospital, but they said he was fine and sent us home. On our way home I told Rowan to go back because the movements definitely felt different. They put me in a bed and said they’d induce me the next day. We were connected to the fetal heart monitor and all of a sudden Arlo’s heart rate disappeared. It was incredibly lucky that we were in that bed at that time. The emergency button was pressed and they got him out in 10 minutes. We don’t know what happened. It was just a random hypoxic incident – he lost oxygen and that caused damage to his brain.
We only spent one week in NICU and they cooled him for a few days. We couldn’t hold him which was hard. We were in the NICU with all these tiny preemies and you could see there was bad news being delivered all around us. An MRI showed there was bilateral brain damage to the motor section of his brain. We were told on leaving the hospital that “worst case scenario”, this could be cerebral palsy (CP). I didn’t know what that was.
He was always beautifully engaged, smiley and making eye-contact, but as the weeks and months rolled on he didn’t hit a single motor milestone. He never rolled, never sat up. We couldn’t cling to denial past the 3-4 month point. At six months old we got his formal diagnosis of cerebral palsy. Even after that I was googling ‘cerebral palsy misdiagnosis’, thinking this cannot be happening.
He was our first kid. I’d never held a baby really until Arlo. Once we had Odie, I realised that if Arlo wasn’t our oldest child we would have realised early on and would have been freaking out. I love that we had no idea and could be in this bubble. I went to mothers’ groups. I did all the normal stuff. The paediatrician who delivered the diagnosis was really kind. He said CP is so broad and could be very mild, that we just needed the diagnosis to get funds and support. He must have known Arlo’s CP wasn’t mild, but that we didn’t need that information then.
Now we know Arlo’s got a profound physical disability. He’s a wheelchair user, he’s non-speaking, and very bright. We’ve just had equipment trials and spent the day looking at wheelchairs and sleeping systems. We saw our first hoist and it’s confronting. I remember when I first saw a stander I thought it was so ugly, but we got used to it. Same with the hoist- we’ll get it, we’ll put it in the spare room for a year and then we’ll be ready when we need it. We love his wheelchair.
How were the early months and years with Arlo?
By some miracle he was great at breastfeeding, then he was eating purees – although that all stopped when he turned five and got his G-tube. He was in a standard pram for ages, and we had this period where things weren’t that different to his friends. By the time they were, we were okay with it. The only time it’s not okay is when Arlo’s really sick and misses school and his friends, and misses out on fun. That’s awful, and it happens more for him because his health is compromised.
He was such a beautiful baby. There was sadness and fear around his diagnosis but a lot of fellow disability parents I spoke to said try and stay in the moment, and when I’d look at him, he was joy. There’s scary stuff, there are hoists and equipment, and people say crummy things sometimes. But we’re lucky that Arlo is generally happy. We’ve had bad periods, but he’s now sleeping through the night and that’s a massive factor in our mood. I don’t speak for every parent, and I know there are real challenges, but I appreciate what we have.
What do you think enabled you to accommodate something so unexpected?
I think part of it is I wasn’t someone who had the baby shower and big ideas about becoming a mother. I didn’t really have expectations. It has helped having a supportive partner – I think that’s made all the difference. Rowan and I have always both worked flexibly and I think I’d feel very differently if it was all on me. I’ve also had professional success as a result of this. My career went in a completely different direction and my work now feels meaningful. I’m writing about stuff I really care about. I have a passion and I feel like I have a purpose.
How did your book, Special, come about?
We had a social worker come out to us soon after Arlo’s diagnosis and she was very well meaning, but she gave us a children’s book and DVD that were so depressing and bleak. I came up with the idea for a book, which was partly an excuse for me to talk to other parents because I wasn’t ready to go to a support group. I spoke to parents raising kids with all kinds of disabilities and there were common themes: we all try to stay in the moment. We all build community, try and find like-minded parents. We all find joy and a new perspective. It connected me to so many people and really fast tracked me to acceptance. I love that it’s helping other parents do that now, but it comes from a place where I felt so differently.
Tell me more about the tube feeding magazine, The Blend.
When we started tube feeding Arlo it was expected he would be on synthetic formula. He had been eating blended puree so it made no sense that we went from that to six bottles of formula pumped into him throughout the day. He was sick and aspirating. It was terrible. Another parent said I could put the pureed food he used to eat down the tube. We did, and everything changed, but there wasn’t enough information around. The pamphlets were really academic or designed for a child. That’s where the idea for The Blend came from. I wanted to make a cool magazine about tube feeding and for it to be beautiful and make people feel like they were part of a community. We have done two issues so far and I’m bringing out a third. The disability market is huge and there should be beautiful things to cater to that market.
How did you decide to have a second child?
During the emergency caesarean to have Arlo they found a cancerous cyst on my ovary so six weeks later my left ovary and fallopian tube were removed. My gynaecologist said we needed to “complete” our family as soon as possible and, very fortunately, I got pregnant when Arlo was just over a year old. That pregnancy was not fun because we were treated as high risk, which meant a million scans. They would say things like, ‘Her head’s growing a bit fast for her body,’ and it was just trauma and terror. But we had a planned caesarean two weeks before her due date and it was a completely different experience. It was lovely. I was awake when she was put on me. Seeing the typical milestones met, it makes you very unsympathetic to typical parents! Arlo taught us to have zero expectations and Odie has taken her time, she’s got there in her own way. Seeing the way her fingers and tongue move was mind blowing. When I saw her standing in her cot for the first time, I completely freaked out because my brain was not used to seeing children standing. We’ve got this weird training with Arlo that is only for Arlo. It’s been such a wonder to see both ways, to have both paths, to see the things they share and where it isn’t different.
But it’s complicated. The night before we had Odie, I was beside myself because I felt like I was betraying Arlo and that I could never love anyone as much. Of course, I could. Since then, Odie has been interesting and challenging in her own ways. Many days are harder with her than Arlo, who tends to be very sweet. Odie is a whole other bag of challenges. We let her do her own thing but I’m probably not as patient. She’s never allowed to be sick! I need to watch that there isn’t different treatment. I love that she has this world view that I never had. She sees disability is normal. She’s jealous of his wheelchair and his hospital stays. She has a really popular brother who makes her look good a lot of the time!
Are there parts of your life now that feel less unexpected than others?
Everything feels normal eventually. I know that we’d be tired and stressed regardless and I’m normally stressing about work, not Arlo. You think you’ll never get used to it, you’ll never be able to fold the wheelchair that has 26 different parts, but you do. Arlo has so much stuff – several medications, tube feeding – but it feels normal. The only times I’m conscious of it is when I notice other people’s reactions. It pisses me off when people think I have a horrible life or that what’s happened to us is the worst thing ever. I was that person before, but I want everyone to know what I know now, then there wouldn’t be this horrible reaction when you learn that your child has disability.
There’s rarely a moment where I catch myself thinking this is not what I expected. Getting the car modified was difficult – I’ve never been a very confident driver and I didn’t think I’d be driving around in a bus but I’m proud of myself for doing it. You realise you can do anything and that gives you confidence in other areas. I didn’t think I could write a book, or start a magazine, or do a podcast. In the day to day I’m tired, I’m laughing, I’m stressed, and the feelings are the same as they would have been if Arlo wasn’t disabled.
More about Melanie here: https://www.melaniedimmitt.com.au/
Son Stories by Jessica Moxham 