Arlo

A Parent Perspective: Interview with Melanie

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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/

Find Melanie on Instagram or Twitter

A Parent Perspective: Interview with Ellena          

/ jess / Leave a comment

I spoke to Ellena about being a mother to two sons – George has a rare genetic condition and Arlo is autistic. Ellena also works as a teacher with children who have physical and medical needs so her professional life is entwined with her personal experience.

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.

Jess: Tell us a bit about your family?

Ellena: There’s me and my husband Charlie. We are both secondary school teachers. We live in London with two children. Our oldest son, George, is 12 and has a very rare condition called SEPN1 Muscular Dystrophy. It’s an autosomal recessive condition which is quite different to other muscular dystrophies inherited from one parent. We have a younger son, Arlo, who’s nine and has autism. Our oldest son is in a mainstream secondary school, our younger son is in mainstream primary school. Charlie and I lurch from one thing to the next on a daily basis like most families.

Jess: What do your boys like doing?

Ellena: They’re both real characters. George is a very emotionally mature child. He has spent a lot of time in hospital with medical professionals so gets on very well with adults. He is incredibly sociable and very good at making friends. He’s very interested in art – he likes making things and we have tried to nurture his creativity. There are lots of things he finds physically hard – he can walk but not really run or jump, and going up and down stairs is hard for him. He sometimes uses a wheelchair, but he’s physically ambitious. He’s decided that he’s very into badminton. He really likes going swimming – he can’t actually swim, but he’s fearless. He’ll just jump in.

Arlo is nine and has a specialist interest in trains. He can talk to you a lot about the world of Thomas, and he likes making elaborate train setups with tracks. He loves going to flea markets and finding things that appeal to him, which tend to be Thomas related. He’s found some amazing Hornby things, though it can be hard for him to regulate himself with the uncertainty of whether he’ll find anything.

Jess: What is George and Arlo’s relationship like?

Ellena: They get on quite well together. Arlo’s quite triggered by the sound of people singing and unfortunately George and I like to sing, so we get a lot of telling us to be quiet. He finds certain noises hard, so sometimes they’re a flashpoints. George said to me the other day that he sometimes looks at other siblings and wishes he had a different sibling relationship, because Arlo’s not so sociable and he’s not tactile or demonstrative. He is loving on his own terms. Those relationships are hard, especially when they both have quite different needs. At times, they have both had to yield to the other sibling in terms of time, or our attention, and I worry about that.

Jess: Tell me a bit about the births of your children, and your realisation that Arlo was autistic.

Ellena: Nothing has gone according to the plan that we had. Life as a parent is amazing when your child is hypothetical, and then when you actually have your children you realise nothing is ever how you think it’s going to be. Sometimes that means that your child is born with a really serious condition that is life threatening or life limiting, as was the case with our first child, and sometimes it’s not so high stakes.

We went through the genetic counseling process to have second child. We found out Arlo was a carrier for George’s condition but wouldn’t have it himself. When he was born, I very quickly realised things like laughing, smiling, eye contact were not how I thought they were going to be. Initially, for a very short period of time, I felt a very deep depression at this not being what I expected, or what I wanted. Then that went, because we are very lucky to be well supported as a family. We’ve got really good professional knowledge of children. I stopped thinking about all of the things that my life perhaps could have been and started focusing more on the way it actually was. It’s an incredibly privileged position – not all families are able to do that, and we shouldn’t expect them to. Life is very hard lots of the time, but that doesn’t mean that it can’t also be good a lot of the time as well. It’s about these massive contradictions sitting side by side always. You have to cling on to the things that are going well so you are able to keep going when things are really difficult.

Jess: How do your personal and professional lives influence each other?

Ellena: Before I had George, I was an assistant head in charge of inclusion at a secondary school in Hackney. I love teaching English, but I was also interested in how children learn and how we adapted the curriculum to fit individual needs. When we had George it became clear that he was very unwell. We had loads of different tests and I left teaching for a while, then had my other son not that long after. When I went back to work I became a more specialist teacher, and now I’m an advisory teacher for secondary schools. I support mainstream schools to do the best they can to include children who have physical or medical needs. We have a phenomenal number of children with very complex and quite rare medical needs in the borough and we want to make sure we get it right for them.

So I’m in the world of additional needs at work and at home. I sometimes reflect on that. I read things online about parents that are fighting for things or they’re not sure what’s happening, and it’s overwhelming. If I didn’t know all of the things I know through work, I would find it so much more difficult than I already do.

I think most parents, most of the time, do what they think is best. I have an interesting relationship with health professionals, professionally and personally, where judgements are made about parents. I always gently ask them, ‘Do you think that parent has done what they genuinely thought was right at the time?’ The answer is normally yes.

As a parent of a child with a disability, the number of times you are judged for your choices or your parenting is far more frequent than parents of non-disabled children. When George was little if a healthcare professional said something I found it upsetting or inappropriate I wouldn’t say anything. Increasingly I do say. For example, an Occupational Therapist visited our house recently to look at George using the bath. We live in a typical Victorian terrace, tall, lots of stairs. In an ideal world, I’d live in a huge house with great access, but the world doesn’t work like that. We went into our normal bathroom, and she said, ‘This is a very small bathroom. Have you considered moving?’ I said, ‘Out of interest, would you appraise somebody else’s house like that? Why do you think that it’s okay to say something like that because they are a parent of a disabled child? You have no idea what people’s circumstances are.’

It’s really hard to navigate those situations sometimes, because all parents are just scrambling around trying to work out what to do at any given moment. If your child has some sort of additional need, those challenges are multiplied by hundreds. Lots of experiences – going to a playgroup for the first time, or your child starting school, or going swimming – all of those things are completely different experiences for families like ours.

Jess: Do you have any advice for other parents?

Ellena: Never let go of what you think is right for your child, and for you as a family. If there’s a disconnect between that and what professionals are saying, or there’s a disconnect between that and how professionals are treating you, there’s nothing wrong with advocating for yourself and your child. Say if you don’t think something is appropriate.

All parents of children with additional needs could give you examples of mad things that professionals have said to them. I try so hard to think about that in my professional life.

Jess: What has been your approach to supporting George?

Ellena: Last year George had his PEG feeding tube permanently removed which was a big step for him because it was fitted when he was 2. He’s now waiting for the site to heal into a mark that’s going to be there forever. For him, that’s a symbol of a chapter of his life ending and moving on to the next thing. He’s quite philosophical about things, but he’s also a very good advocate for himself and others. I’m very proud of him.

We’ve never held him back or helicoptered over him. Sometimes I’ve had to keep all of my anxieties to myself, which is really hard, but he’ll give everything a go. But because I’m so immersed in this world, I sometimes forget that our life is quite different to other people. It’s not unusual for young people to have an autistic sibling, but George has a physical disability that is progressive on top of that. He has lots of medical equipment and these things impact him if he wants to do a sleepover or go on a school trip. I think George feels the difference quite keenly.

My husband and I have tried to encourage the boys to say what they feel about something, even if they’re worried it might upset us. It’s probably less obvious what the impact is on Arlo because he can’t always articulate his thoughts in a way that we understand. With George, we’ve always been very upfront and encouraged people to ask questions. When he was very little he wore a helmet because he could walk but he had lots of falls, and splints. We always encouraged George to be proud of those things. Recently, we went to a hospital for a sleep study and the next day he wanted to get back to school. It was hours of waiting for a consultant to see him, for no clinical reason. George wanted to leave and when I pushed for them to discharge us, the doctor asked if we had somewhere else wee needed to be. On the way home, George asked if the doctor was saying that because he has a disability, he shouldn’t expect to have a normal life? That he should expect to give up his days to sit in a hospital?

I’m hoping some of our groundwork will support him when he looks around and sees all of these differences. It doesn’t mean that life’s not going to be challenging in lots of ways. I try to acknowledge the differences and be really matter of fact about them, with George and with the families I work with. Say, ‘Yes, this is what my child does.’ I think the reason George is so keen on raising issues when he thinks somebody’s being discriminated against is because we’ve tried to encourage him to feel confident in himself, and with having a sibling who behaves differently. If we’re on the bus and Arlo’s flapping his hands and somebody says something, I’ll say, ‘Yes, he’s flapping his hands.’ You don’t have to get annoyed with people, just reaffirm what’s happening.

We say to our kids that the world is imperfect and there will always be people who are going to say and do things that they shouldn’t. You just carry on doing the things that you are happy with and that you want to do. You’ve got lots of supportive people around you.

You can find Ellena on Twitter and Instagram