A Parent Perspective: Interview with Jo

My son, Ben, is 12 and I knew very little about disabled people 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 other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Jo. Jo’s eldest son is disabled and her personal experience motivated her to look at the wellbeing of parent carers in her professional work as a psychologist and writer. I loved talking to Jo about how she’s balanced working and caring over the years, which I think is a familiar challenge to so many of us, and how she’s making sure her research is useful to parent carers.

Could you describe your family?

I live with my husband and three sons. My eldest is 14, and then I have a 13 year old and a nearly 10 year old, and we live in north London. I often describe our family as quirky which I’ve come to embrace.

My eldest son is disabled – he has cerebral palsy, learning disability and autism. He’s in a good place at the moment. His sense of humour has come out – he’s discovered some swear words that he’ll suddenly shout out at tea time and I find very funny (and he knows he’s being cheeky). I don’t want to undermine how difficult it has been to get this good place, so I appreciate and enjoy it, but it can feel precarious.

What are your son’s favourite things?

He is happy and really settled in a special school. He loves pizza and chocolate cake, and transport. Once a year I take him away on a train and we went to York in the summer which was special. He sits on the train and shouts ‘All aboard!’ which makes me chuckle. He loves being out and about, for coffee and a cake, to sit on the bus.

In the house, and during the school holidays, it’s quite difficult to entertain him other than TV, iPad, iPod. He likes the trampoline, pacing around. He used to be absolutely terrified of dogs and it was getting to the point we couldn’t go to our local park because he’d scream or run into the road when he saw a dog. But we got a dog three years ago and she’s been incredible, and then we’ve just got a new puppy who we hope will be more playful and interactive. My son loves throwing a ball or a stick for the dogs, and they have now become a big part of his everyday life. He gives them fresh water, puts their food out. He’s in charge of letting them in and out of the garden and they have cured him of his phobia.

How does his disability affect his day-to-day life?

He is very mobile and walks and runs around. His memory is not great so we break things down for him with lots of repetition. That can be quite hard when you’re very tired. His speech is quite affected. Something I found really hard to get my head around with brain injury is that some days it’s like he’s firing on all cylinders – he’s funny and fast, tells my husband he’s going to put custard in his slippers – and it feels like this is him. Then another day he won’t respond – he’ll be staring out the window and it’s like the neurons just aren’t connecting in the same way. I think some of it is tiredness or when he’s coming down with illness. I’ve learned over many years that when he’s getting ill he has a couple of weeks of feeling grotty but it doesn’t show, so I wonder why he’s being so irritable and then it all comes out and he’s lying on the sofa and needing me.

It was interesting during lockdown that he was so well and his behaviour was amazing. It was only when I went to a training session a few years ago that I heard someone say that people with learning disabilities can be more prone to illness, and illness can really affect behaviour. I sometimes feel guilty for not realising these things sooner. You need to know these things to empower yourself, and also to know that some changes are temporary which makes difficult periods more bearable.

Your two eldest sons are quite close together in age. What were their early years like?

After my eldest son was born we were so delighted he had survived following a traumatic birth and we didn’t fully have an idea of what his diagnosis meant for him. Then when my second son was born it was really tough because it was when some of my eldest son’s difficulties became more apparent, when he was 18 months old. I was full of hormones, and I couldn’t recover from the birth with two kids under two. I had some difficulties trusting other people to look after my eldest son, which may have been the case anyway but was exacerbated by his difficult birth, and childcare was expensive so I didn’t get enough support. I remember I had to put my second son on a chair on the sofa, with a footstool in front, to stop my eldest son getting to him and scratching his face. I’d found a way that kept everyone safe, but the health visitor came round and said I couldn’t put a baby in a chair up on a raised surface. It’s difficult when people come into your house and make comments without having an alternative solution. You are quite exposed when you have a baby anyway, but when you have a disabled child that is magnified – the number of people coming, looking, commenting, telling, advising. It can be quite disheartening as a parent. You’re having to prioritise what’s the most important thing at the moment. That’s why parent carers have such amazing skills.

How did having your eldest child affect your career?

I was a psychologist in primary care in the NHS before I had children. After my eldest son was born it was just about manageable, but then his appointments really increased and I had my second son. My eldest was getting ill a lot and there was a lack of flexibility from my employers and it became too difficult. It was a really hard decision to leave my job because I’d worked really hard for it. I know lots of other parent carers have this difficult decision to make – you like your work and it gives you purpose and meaning, but then it adds to the stress so much that it becomes untenable.

I gave up work for a bit, and then I started working in counselling for a charity supporting male survivors of sexual abuse. The team that I worked with and the work I did there was incredible, but I kept coming back to emotional wellbeing in parent carers and wondering why no one was talking about it. It felt like a hidden thing that wasn’t acknowledged because everything is about the child. I was mulling this over for a long time before I decided to go back to do a Doctorate and research that topic. I started my Doctorate when my eldest son was 10 and it took me for four years.

Before that I had set up my website Affinity Hub (www.affinityhub.uk) to signpost to emotional support because I was hearing anecdotes about general counsellors not really getting what parent carers needed and I thought there must be some people with expertise in this area. I wrote a few articles for journals in therapy and counselling and found counsellors that were often parent carers as well, or had worked in the field for a long time and really got it. I also did a brief survey on my website because I was curious about how parent carers were feeling. The response I got to that drove my desire to do the doctoral research, which then fed into my book Day by Day: Emotional Wellbeing in Parents of Disabled Children which was published earlier this year.

What did you find in your research?

To feel well, you want to feel like you have some control over your life and that came through really strongly in my research. The importance of connecting with positive other people as well and how for some people their family or friends could be such a strong support and for others those were the very people that had really let them down. The importance of finding other parent carers, which was not surprising but so strong. Also the importance of the connection, the love and strength of feeling that parent carers have towards their child. I think a lot of parent carers develop an awareness that we don’t have control over life, and it can be difficult at times. There is a kind of a wisdom – you see what’s really important, and that things are fragile and precious.

it was so important to me that something practical came out of my research because having felt quite alone in some of my difficult feelings in the early years, I was shocked at how many studies were out there about risks to mental health for parent carers. I’d never read about these studies and I was a professional in the mental health field. When I found that research I thought I’m not alone. I’m not a failure. It was so powerful, but also made me really angry that it’s not better known. It’s important to me that research gets to the people that need it and I worked not only on my book, but training for professionals and the NHS about how they can better support parent carers.

Has your research made you think you would have done some things differently?

A common theme was guilt, and giving yourself a hard time for things that you could have done differently. I’m reading a lot about self-compassion at the moment and I think it’s so important for parent carers. You’re only human, you can’t know everything, you made the best of things at that time. There are things that I would have done differently, but I try to not give myself a hard time about it now. There are certainly things that I would want to have been different with the support around me, and the support around all parent carers. My big bugbear is acknowledging the emotional impact, which I think is still rare or done very insensitively.

Have you done any research into siblings of disabled children?

A lot of parent carers I spoke to felt that there could be a tendency to overcompensate for siblings. To give them amazing days out and let them get away with things, being desperate to give siblings amazing memories.
I felt guilty for a long time about my middle son because he was born so close to my eldest. I tried to protect him as much as possible but I’m sure it was stressful for him because of some of the behaviours of my eldest son. Now I look back and I don’t know what more I could have done. It was the nature of the experience.

It’s interesting with siblings because they go through phases of getting on. Initially, my eldest and middle were quite close, then my eldest and youngest, and then my youngest and my middle sons. I think you have to remind yourself that those dynamics would be there anyway, disability just adds an extra thing.

When they were all younger and my eldest son disturbed a game, for example, I would say ‘It’s not his fault, he doesn’t understand.’ I was hoping that they would get an understanding of their big brother’s needs. Then I went on a Sibs training course, and one of the things that adult siblings of disabled people reported as hating hearing the most is, ‘Don’t give your brother/sister a hard time because they can’t help it.’ Or ‘it’s not their fault’. So I’ve stopped saying that but it’s an ongoing learning process!  Being a parent is hard, managing all these dynamics, and you never know if you’re making the right decisions at the time. I think it’s important to keep hold of the idea of ‘good enough’ parenting rather than expect perfection. There’s no such thing as a perfect parent, you just try and do your best.

You can find Jo @affinityhub.uk on Instagram, Twitter and Facebook

Jo’s website is here: www.affinityhub.uk

You can order her book Day by Day: Emotional Wellbeing in Parents of Disabled Children here

A Parent Perspective: Interview with Jenn

My son, Ben, is 12 and I knew very little about disabled people 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 other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Jenn, mother to Alastair who is 17. The two of them run Smiling and Waving which sells brilliant badges and merchandise. Earlier this year Jenn and her husband Adam fitted out an accessible camper van so that their family can travel with the facilities and equipment Alastair needs. We talked about how much freedom that gives their family, but also the challenges of Alastair transitioning into adult services.

Could you describe your family?

We are Jenn, Adam, our son Alastair and our spaniel. We live in Hull, East Yorkshire. Alastair is 17 and goes to college where he’s doing a sailing course, a Duke of Edinburgh award and works in the cafe and shop there. We love kayaking, the beach and the sea, live music, eating out, socialising. We’re never really at home.

Last year we bought a panel van that we’ve spent this year converting to be an accessible crafter camper van designed around Alastair’s access, equipment and safety needs. We’ve almost finished (it’s a work in progress) and we went away every single weekend over the summer.

What does Alastair love doing?

A lot of water activities like kayaking and paddleboarding. He also loves riding his trike which gives him so much independence – he’ll stop to notice things which we would have pushed him past in his wheelchair. He also loves skateboarding and music.

At home he likes YouTube. He loves watching reruns of Rick and Morty, laughing at the same parts every time. We listen to a lot of music on vinyl and he knows all the album covers. He’s a big Gorillas fan, and Paul Weller, Oasis, David Bowie.

How do you describe Alastair’s disability?

Alastair has Angelman syndrome, which is a genetic disorder. He is nonverbal but communicates through symbols, tone of voice and body language. Alastair has physical disability and doesn’t walk a lot. He uses a wheelchair, his trike, or his walker to get around. He also has a severe sleep disorder and epilepsy.

How did you pick up that Alastair might have a genetic condition?

Alastair struggled to feed after he was born and was tube fed as a baby. He couldn’t do things other babies could do and everyone said it was because he’d been tube fed for so long but I knew it wasn’t just that.

I was going to the Health Visitors, but one of them told me I should just do more shape-sorters with Alastair. I went to the GP. It was a constant fight to get listened to and it was only when we had Alastair’s one year checkup and he couldn’t hold his head up that they finally listened to me.

Alastair was finally referred to a paediatrician and a geneticist said they were going to test for Angelman syndrome. They told me not to google it but I did, and as soon as I read the list of symptoms I knew he had it. It wasn’t a surprise when he then got diagnosed at 18 months old.

I was 17 when I had Alastair so having a baby was a big thing, and he just happened to have a disability. Adam and I were so busy working out our careers that if anything it made me more determined. I had no preconceptions about what parenting would be like. I wasn’t even an adult myself, so we’ve always grown together. Parenting doesn’t come with a handbook, no matter what your age.

How was Alastair’s school experience?

I walked into a nursery classroom at a special needs school, with the children sat in a circle doing physio, and I felt like I could have just left Alastair there and he would have been fine. He was at that school from age three to when he left at 16, last year.

Alastair really thrives being around a variety of people. When he got older at school, he was put into a Profound and Multiple Learning Disability (PMLD) class and I felt it was very segregated so he’s now at a special needs college with a whole variety of disabled people and he is loving it.

Post-19 we’re going to look to get a personal budget for Alastair. He’d go stir-crazy in a day-centre type setting so I’m hoping to continue with watersports and what he loves, but also fill his evenings. He goes to a youth group on a Tuesday night and I just found this new disco on a Wednesday night, and we go and see live music on a Thursday night. He’s a busy guy.

How does Alastair communicate?

Alastair is very good at letting you know his immediate wants but sometimes he struggles with his emotional needs. He smiles a lot but sometimes he laughs when he’s in pain, or giggles when he’s upset, and the difference between a happy giggle and an angry giggle is very subtle. People can think he’s being friendly when I know he’s saying no. Alastair really responds to tone and mood so if we see he’s angry we model the word angry but it’s difficult because we’re trying to guess his emotions. Maybe he’s more mad than angry. Alastair loves choosing his own outfits. He does that every single day even though I think some of his outfit choices are questionable!

We’ve always presumed competence with Alastair. The first time we heard about AAC (augmentative and alternative communication) and presuming competence was at a conference through a charity called Angelman UK. His speech and language therapist (SLT) said he would have to prove himself before he got an AAC device. They said he wasn’t doing enough on the one they had loaned him at school. But hearing about competence was like a little light bulb moment and made me realise the advice we’d had was outdated. I watched webinars and I found an AAC device for Alastair. People assume his SLTs got that for him, but it was us. Sometimes he’ll random press on his device, but whatever he says we respond to. One of the first words he learned was ‘come’, and I would come running, every single time. He’d wait until I’d get out of the room, just because he knew I’d come back.

We’re modeling language to him on his device and it’s really helped his understanding. Alastair wouldn’t really understand if you asked, ‘Would you like a drink?’ but if you say show him a drink, he knows. We don’t always have objects with us, but on the AAC device we’ve got a full range of vocabulary available. Maybe he’ll use it more to communicate to us in the future. 

What do you do to facilitate him doing the things he enjoys doing?

We employ Personal Assistants (PAs) for him. Everything needs to be wheelchair accessible and we have to plan a lot of what we do around toilet stops and Changing Places. The van is life changing in that respect – we can go more places without needing to find a hotel or a toilet. It was a mobile Changing Places at a festival that first gave me the idea!

Alastair has funding through a personal health budget and direct payments from the local authority – two separate accounts, two separate audits – which pay for his PAs. All of his PAs have been friends of friends, and only one of Alastair’s PAs has worked in care before. We’ve got a team of three young people who have similar interests to Alastair. It can be difficult having people in your house a lot but it’s made easier by us all getting along and Alastair winding us all up.

We’re going to readvertise soon because we’re looking for somebody to add to our team but I do find it a really daunting process. The employment side is not something I enjoy doing at all. Adam’s always reminding me that I’m not an accountant and I shouldn’t be doing all the work. We’re very lucky to have a lot of different medical specialists involved but it’s also managing all of them. There’s all this stuff that goes on in the background – what you see on social media in the smooth swan gliding along, but actually there’s all this paddling beneath the surface.

Are there new challenges now Alastair is almost an adult?

Yes. Alastair’s meant to go to a respite home for two nights a month, but he’s only been six or seven times in the past two years. We wanted to move to a new respite setting for adults and the meeting happened recently with continuing health care, his adult social worker and a children’s social worker. The meeting was without us and one of the social workers didn’t agree with our plan. I got so frustrated because I can’t make even something as important as this work.

We are no longer Alastair’s legal guardians because he’s over 16 and that’s really hard. Alastair needs a filling and we had to sit with a whole panel of people to decide whether it’s in his best interest or not. We get told all the time that the systems are there to help vulnerable people who lack capacity but I want to do everything for him and instead I have to apologise that I can’t get things to work for him. Last Friday the social worker hadn’t responded to any emails about Alastair going to respite so the team cancelled his transport but didn’t tell us. Alastair was left at college and when they rang us we were an hour and a half away. Apparently he’d just been saying ‘home, home, home’ on his talker which broke my heart. I’m trying to ring everybody on a Friday night but they’d gone home. I couldn’t get anybody else to pick him up because his wheelchair doesn’t fold so we ran to get him. So much of his care has to be organised by all these different people and there’s no process for when it falls down.

How has having Alastair changed you?

Alastair has taught me to have fun. We’re playful and laugh a lot. I was so shy at 17 but there’s no room for being shy if you want to stand up for Alastair and demand what he needs. Deep down I’m still really shy and get nervous but if you saw us out you wouldn’t recognise that side of us. He’s also taught me how to advocate not just for him but for a lot of people. To stand up for everybody’s human rights.

We’ve been parents for nearly 18 years now, but this last year has been the hardest. Raising a teenager has been the best thing I’ve ever done. It’s amazing. But the transition into adult services has been the most difficult thing since he was born even though I tried to get all the information that I could. I sat down with solicitors. I’ve gone to conferences, workshops, webinars, and it’s still fallen down. I was warned about the transition process being hellish and it is.

I’ve just had a few months where I’ve not been able to work. I went back and did a Masters four years ago, and then I built up my own freelance business because working full time just wasn’t possible. Last year was so frustrating when I’d set up my own business but Covid meant I suddenly couldn’t work for for six months. That’s when Smiling and Waving came about, selling badges and merchandise. It’s for Alastair – he’s involved as much as possible in every aspect and it gives us both a kind of creative output. He designs T shirts, uses his walker to go to the post office. It’s really great for both of us.

Find Jenn on Instagram at @smiling_and_waving

Confidence Trick (in a good way)

It’s two years since we went to Junior Parkrun and after the 2km run the organisers refused to give Ben a token because he had been pushed though the finish line, which meant he didn’t officially take part. They later admitted that they should have included him, since being pushed in a wheelchair (or all-terrain buggy) was different to a baby being pushed by their parent, but by then it was too late.

We took all the kids back to Junior Parkrun last weekend where they all ran 2km with some friends (not me – still working on my ankle rehabilitation). Ben got his fastest ever time thanks to his particularly athletic carer, F, pushing him. Molly ran for the first time and pipped Max to the finish line because he was incapacitated by a stitch, apparently.

James and I had agreed beforehand that we wouldn’t talk to anyone about Ben taking part. They would all run, and then push Ben though the finish line and assume they would all be given a token. If it wasn’t offered to Ben, we would ask for it. We did this – actually Ben’s carer pushed him through – and a token was freely given. Ben really enjoyed it, as did Molly and Max once they’d got their breath back and eaten some Mini Cheddars. It was fun! And made us feel like Very Good and Active Parents.

I realised that we have changed our approach to some situations. My instinct used to be to try and let everyone know that we were there, talk them through what Ben would need in an effort to alert them to our situation and smooth the way. Sometimes this worked.  But sometimes it created an impression that I was asking for favours and thought what I was asking for was at their discretion. Like I knew what Ben needed was tricky, but since I was asking nicely please could they possibly be able to accommodate us? So sorry, thank you so much.

Now, I wonder if it’s better to go into encounters acting like what Ben requires is going to be offered. With an aura of certainty that someone will give us what we need, because to do otherwise would be unacceptable. Perhaps then the onus is on them to refuse, rather than us to beg. Because what we’re asking for is never too much.

It’s a work in progress for me, but I think it links to a confidence that I try to radiate. Ben deserves his place in the world and for people to accommodate the way he moves and presents. I am not apologetic about his disability, and I think projecting that allows other people to believe it too (or at least might interrupt their instinct to pity or say something completely freaking ridiculous).

I think Parkrun learned from their 2019 mistakes, but to bring it back to chilly mornings in a south London park, if you act like someone should give you the token, are they more likely to give you the token? Let’s try it.

A Parent Perspective: Interview with Fiona H

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Fiona who has three sons. Her youngest son, Joel, has just turned 18 and is autistic. I really enjoyed hearing Fiona talk about the dynamics in her family now her children are adults.

Could you describe your family?

I have three sons: Samuel is 24 and he is very close to Joel, my youngest, who just turned 18. My middle son, Ethan, is 20 Ethan is also extremely close to Joel and they have a unique relationship. Joel was originally a twin but I lost the other baby during the pregnancy.

Joel didn’t sleep for the first six years of his life and didn’t meet milestones. He didn’t walk until he was about two and he had very little speech. Because I had two older children I knew there was something going on with him and I took him for an assessment when he was 18 months old. A professor in Glasgow said he thought what happened in the womb had something to do with Joel’s delayed development and he thought there might have been some brain damage.

Joel went to a fantastic special education nursery in Glasgow when he was two and a half, and then to a special ed school because his development was very delayed. His diagnosis was Global Developmental Delay, which is a massive umbrella term that they say when they don’t know what’s wrong.  When we moved up to Dundee, he changed school where he was assessed and eventually given a diagnosis of Autism Spectrum Disorder and Sensory Processing Disorder when he was 13. I didn’t have much support – my family don’t live here and my ex-husband and I split up, so I looked after the boys on my own.

Can you tell us a bit about Joel and what he enjoys?

Joel’s never really played with toys. His favourite thing when he was younger was a taking leaves and branches off trees and bringing them home to demolish, bit by bit, until they were gone. He’s six foot two and very skinny. He was a picky eater but his school have been encouraging him to eat everything. He has a very sweet tooth and he would eat chocolate all day if I let him. He loves music – there’s always music on in every room of the house and the car – and watching films. He’ll watch the same film for months on end and know every line.

His speech is coming along – he can say short sentences now, what he wants or he doesn’t want. He very rarely gets upset, though he bites his fingers when he’s frustrated. He’s good fun. The school describe him as being very gentle. He’s a really sweet boy who is affectionate in his own way.

Is Joel at school or college now?

A few years ago Dundee social services were pushing me towards employing support for Joel directly which I really didn’t want to do. They could offer me all sorts of things in theory, but in reality the funding is not there and I couldn’t bear the thought of Joel having to live with me for the rest of his life.

I wanted Joel to go a Camphill School, which is based on the Steiner method of education, because there was almost nothing for him in Dundee and they do a lot of learning outdoors which he loves. I had three friends help me with the application which took about six months, and we got him in. Dundee fund the place and it’s actually cheaper for Joel to be there than it is for them to offer the services they said they could at home.

The school has seven acres of land and they grow a lot of their own food which the kids are all involved in. Before Joel was going to school and coming home, not seeing any friends out of school. At Camphill he lives in the same house as five other boys, house parents and co workers. He eats almost anything now, which he never did before. He’s learned to ride a bike. The whole ethos of the school is to push the kids to the best of their ability. He has a great life there and is so happy.

How did you explain how Joel was different when the boys were younger?

There’s 21 months between Ethan and Joel. Luckily, Ethan was a very self contained and easy toddler because Joel took up almost all of my time. Samuel was six when Joel was born and he was very helpful. I used to say to the boys that Joel has a different brain to everyone else’s but it’s a very special brain, and they thought that was quite cool. We kind of knew that he was autistic, but we didn’t want to use the word until we knew for sure.

We dealt with things on a day-to-day basis. Every day was different. For the first four months of his life, Joel screamed the house down every time I bathed him. I was googling and it came up with loads of scary stuff, so I just went with my instincts and persevered. I instinctively knew he needed repetition and eventually he loved baths and now he loves swimming.

How quickly did you come to terms with Joel being different?

In my heart of hearts, I knew he was different. I didn’t say anything to anybody, not even my husband at the time, but I just knew from the moment he was born, when he cried for a few seconds and then lay in my arms and looked at me as if to say help. I think I wanted to hide it, keep it to myself, process it, before I could vocalise it to anybody. I’ve heard a lot of parents talk about the grief that they feel for the life they won’t have with their child. Mine wasn’t grief, it was feeling that I needed to prepare myself, pick myself up, dust myself off, then think this is going to be different. I was then able to get him assessed and tell other people.

I accepted it quite quickly. I’m very pragmatic and I thought I am going to deal with this head on. There were so many times that me and the boys would go out somewhere and have to leave early because Joel was having a meltdown. I used to get really embarrassed and upset. By this time, he was nine and tall so I’d have to physically lift him over my shoulder and sometimes people would stare at Joel. I felt like asking them, ‘What is your problem?’ But then there would always be someone who would come over and say, ‘Can I help you?’ There wasn’t much they could do, but the offer was so lovely. It was difficult for me to get the point where I could think I’m not going to make any apologies for Joel. This is my son. I’m taking him out of here for his own safety, not yours and I don’t care what you think.

How have you and Joel adapted to his needs over the years?

When Joel was younger I didn’t look too far ahead to the future. One day at a time. There were some hilarious things, but there were also some really tense and anxious moments. Now it’s just a joy to be with him and it’s not hard work anymore. I still have to monitor him, there’s still a lot of things that need to be done, and I couldn’t leave him on his own. But he’s so much easier. Joel has surprised me every step of the way, so I’ve been fortunate.

Now we can do almost anything as a family with Joel but it’s taken years of repetition. I first met my new partner about eight years ago and he’s a very outdoor person who loves going walking in the hills but Joel used to run off. We almost had a helicopter out once to find him because he went missing. But we kept doing what we were doing until he learned not to go too far ahead and always to wait. Now we’ve climbed three Munros with Joel. He’s so fit and healthy and he’s in his element on walks. His love of the outdoors has reflected on the other two boys.

We can go out for a meal now too, albeit we tend to go to the same sort of places. If we go somewhere new, I’ll prepare him and he’ll always ask for a burger. Until recently, he’d get very upset if there was a baby crying but his school house parents had a baby last year and now just blanks it out. I think I subconsciously decided I wasn’t going to stop doing the things that I like, but try to expose Joel to things slowly. I wouldn’t put him through stress, but we just kept persevering with all sorts of things in a very slow but repetitive way. Now I can take him into almost any situation and he’ll soon tell me if he isn’t happy.

I persevered because I decided that Joel was going to have a really full and interesting life, and I wanted him to experience things. It’s the same at his school now. He learned to ride a bike last year at school and I went cycling with him for the first time this summer through a forest and it was such a lovely experience.

Are there things that you would have done differently?

I don’t think there’s anything I would have done differently with Joel. I didn’t read books about autism, it was all instinct. You feel like you should be doing all these things with your child, but actually you have to go at their pace. I learned that I couldn’t push Joel because he would very soon tell me that he wasn’t happy. I think the only thing I would do differently would be to have spent more time with the other two boys. When we would have to leave a party early I always felt their disappointment really deeply. They never complained, but I still feel guilty about that.

What has having Joel as a brother meant to your other two sons?

All kids are resilient but I think siblings of children with disabilities are even more so. Samuel has this inbuilt sense of responsibility. When he went to university, he phoned me every day for about two months asking how Joel was. I had to tell him that Joel is my responsibility not his. They’re so protective of their sibling.

I think my two other boys are very different to their contemporaries because of Joel. They’re very caring, very compassionate, and very protective of him. I have a really good relationship with the boys and we are very close. I think Joel has enabled that even more so than if he wasn’t there. My two have been through loads of stuff with Joel and they’re both very well rounded boys. We can’t imagine our lives without Joel. He’s enriched our lives in a way that has been amazing, and we wouldn’t change it.

You can find Fiona on Instagram here, and on Twitter here

A Parent Perspective: Interview with Anoushka

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Anoushka who has two sons, Spike and Oscar. Amongst the many interesting things Anoushka talks about is setting up Transport Sparks, a social group for young autistic transport enthusiasts.

How would you describe Spike?

Spike is 12. He’s very funny and charming with a good sense of the absurd. He’s quite a good negotiator – very skilled at getting us to add an extra leg to a journey, or more time on his devices. He loves going to the cinema, trains, hand dryers and adventuring around London. He’s also autistic and has ADHD (inattentive form), so he has some struggles with typical forms of social communication and he has sensory processing differences which can be a bit intense for him. He also has an amazing memory and a very interesting way of looking at the world.

When did you realise Spike wasn’t neurotypical?

From quite early on. He had a lot of trouble sleeping and feeding. He missed a few early milestones, he didn’t point or crawl. The books said all babies are fascinated by faces but he was not at all. Both my husband and I thought about autism before Spike was a year old. He started struggling in stay and play groups and while he started speaking at a year old, his language developed slowly. We went to see a GP when he was two, and had a diagnosis of autism by the time he was three.

How did you feel about the diagnosis at the time?

I felt like the possibility of autism had been rattling around in my brain for such a long time that it was a relief to have the question answered. There was an optimistic aspect to it because now we could get on with our lives. But it’s a challenging process to go through as a parent, to have to list the ways your child isn’t like other children, the difficulties they have.

Following the diagnosis, we were occupied with trying to set everything up – to apply for a statement of special educational needs, find a school, make sure that he was getting enough speech and language therapy, physio or OT. I didn’t feel too isolated but actually I hadn’t really come up for air and when I did I felt quite alone. I didn’t know anybody who had gone through anything similar and I didn’t really see other parents. At some point I found a very good group, mainly online, and we met up from time to time but it wasn’t really until I started meeting others through Spike’s special interests that I found lots more people who got it.

How was it having your second child?

I had reached a point where I had some mental space to think about another child. Although we were still in the process of getting Spike’s diagnosis, I’d reached a point of acceptance quite quickly and so if Oscar was going to be autistic that was fine, though I was alert to how he was developing. He was very different to Spike and him finding things easy felt weird and magical. He followed a more typical trajectory of milestones and it was a very different experience, a different delight. Oscar is now 9.

What were your expectations of what being a parent would be like?

I didn’t really have any idea what it would be like being a parent. My husband and I are slightly quirky only children and in some ways I expected to have slightly quirky children. I was excited to meet them and get to know them. I can remember having a picture in my mind of walking down the street with my child having a conversation. That took a long time to happen with Spike but I can remember the moment when it did happen and thinking, ‘Oh, we’re here.’ It was lovely to have that moment with Oscar, too and we reached it much more quickly than I expected! He’s a good talker.

How was school for Spike?

We had a relatively accommodating primary school and Spike had some good years, depending on the teacher. We had a lot of control over who worked with Spike so he was always really well supported. We were lucky that his year group were a wonderful bunch of children. Spike did a presentation to his class in year one about how things were for him and this helped his friends support him. It was always hard finding the balance between the academic focus in school and what we wanted to prioritise so Spike had time out of school. That’s a big reason why we asked the local authority for funding to home educate.

What’s your approach to home education?

Our starting point is always something he is interested in. We do project-based work and look for ways to bring in new information. We’re keeping our eye on the national curriculum and he’s a little behind his peers in some areas though he has some real strengths too. We work on Spike getting to know himself better, his communication, learning about the world and independence. We spend a lot of time out of the house because he loves travelling and learns well on his feet. He’s learning as much as he ever did, if not more. It’s a team effort with us, tutors and professional input.

In an ideal world I would like Spike to be at school but we can’t find the right place for him. There seems to be this idea that autistic children are either so-called ‘high functioning’ and can be integrated into a mainstream setting quite easily, or they have more substantial learning difficulties and higher support needs. I think a lot of autistic kids actually fall between those two. He needed more support than the mainstream schools could offer, but not at the expense of his education. It felt like we were being asked to choose.

How to do you talk to Spike about autism?

He knows he’s autistic, although we’re still refining his understanding of that. We’re introducing him to the idea that everybody has things they need support with and things they’re good at and he shares some strengths and weaknesses with the wider autistic community. It’s striking a balance between letting him know that if he’s struggling he can factor in the fact that he’s autistic, without saying that all the things he finds difficult are because he is autistic.

Could you talk a bit about Spike’s passions?

Spike always had things that he was very deeply interested in. It started with letters and numbers, then logos, idents. When he started liking the London Underground he had been quite anxious out of the home, and we saw that it was a way to broaden his horizons. He didn’t like the noise of trains but he also really wanted to be near them, and we wanted to help him work through this tension. It also gave us this shared experience of doing things together.

My husband and I usually take it in turns to go with Spike on a journey so we were spending every weekend going across London and it could be a bit lonely. I had heard that lots of autistic kids like trains but I couldn’t find any clubs. I tweeted saying, ‘Any other parents of autistic kids who like transport interested in getting together?’ and then I was inundated. I set up Transport Sparks – a social group for young autistic transport enthusiasts – about three years ago and it’s evolved into something brilliant.

When Spike meets up with a bunch of Transport Sparks they really connect with each other. They’re always so surprised that they have that meeting of minds and it’s also great for the parents to chat online and off.

Are there things that are challenging?

Spike’s anxiety permeates most aspects of his daily life and therefore our lives. That’s definitely more challenging for him than it is for us, but it’s difficult and affects the things we can do. We do a lot to try and mitigate it, but we can’t make it go away entirely. Spike does have some distressed or challenging behaviours from time to time. We’ve got better at supporting him and coping, ourselves, but it can be tough.

Has the way that you see the world changed since having Spike?

It’s a disgusting cliche, but I’m so much more empathetic than I used to be. I think it’s also made me feel more comfortable with uncertainty. I can’t see beyond a few months into the future, everything’s constantly under review, and that’s okay. It’s definitely made me more confident as a parent and self-reliant. There was a time early on when I thought the professionals had all the answers and now I realise that they are advisors and my husband and I know Spike best. We have to arrive at our own decisions. I hope I carried that forward with Oscar.

Are there things that Oscar finds difficult about having an autistic brother?

There are things which I don’t think he appreciates are, or could be perceived as, challenging – he doesn’t really see them that way. He’s found it more challenging as he’s got older. I’m starting to see that he finds it more difficult when, for example, Spike is very upset and he’s beginning to be concerned that he’s “adding to our problems” if he has difficulties. I have to be very clear that he can bring the good and the bad to us.

I noticed recently that Oscar was cross with himself for accidentally using negative language about autism and I felt bad that he was tying himself up in knots, but then also a little bit of me thought it was good that he was thinking about it and trying to choose his words carefully. I said as long as we think about our words, talk about them, we’ll be fine.

Is there a key thing you’ve learned about being a parent to Spike?

I remember a really clear moment of having a chat with someone in the playground and she asked, ‘What’s your son like?’ I gave her this terrible answer, like, ‘He struggles with this, he’s not very good at that.’ I burbled this all out at her and she didn’t really know what to say. It was a really clear moment of thinking that isn’t who Spike is to me. What am I saying? I’d adopted the language of the professionals. I thought I’m going to change the narrative and frame all of this differently, because it’s just not working for me.

I’m a rather self-conscious person and autism can be quite a loud, visible thing, but Spike has helped with that. He imitates transport noises and announcements when we’re out and if you’re feeling embarrassed or self-conscious about it, then other people pick up on that and everyone is tense. I’ve learned to just enjoy his enthusiasm and concentrate on him, and often people pick up on that positivity instead. Spike’s not particularly shy. He enjoys people and having conversations. We’ve ended up having so many more positive interactions with people than negative ones.

It took a while to unpack Spike’s way with words. He often uses scripting* and I would say 90% of that is meaningful – borrowed phrases used with intent. The rest is verbal stimming*, but even that is information. He’s letting me know he’s feeling a particular way. It’s all communication, if you’re paying attention.

You can find Anoushka here:

Blog: Spitting Yarn

Twitter @spittingyarn

Instagram: @spittingyarn

Transport Sparks Facebook group

*Definitions of some words:

Scripting is ‘the repetition of words, phrases, or sounds from other people’s speech.’

Stimming or self-stimulating behaviour ‘includes arm or hand-flapping, finger-flicking, rocking, jumping, spinning or twirling, head-banging and complex body movements. It includes the repetitive use of an object, or repetitive activities, speech or sounds.’

A Sibling Perspective: Interview with Fiona

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – usually A Parent Perspective, but this time A Sibling Perspective – with Fiona, who lives with her disabled brother, Ewan. I found it so interesting to hear her thoughts about growing up with her brother.



Could you describe your family?

My mum and dad have three children – I’m the oldest, then my sister, Kirsty, then Ewan who is three years younger than me and is disabled. We grew up in Sussex and then moved to Scotland when Ewan left school to a house that is designed around Ewan’s needs. Ewan and I have always been incredibly close. My parents were Ewan’s carers but they’re not getting any younger and I wanted to be involved so now I am his main carer. My parents, Ewan, my husband Dom and I all live together which means there’s a lot of bickering because we all have strong opinions! But it works well for Ewan because he has me and my husband around and we can go out and do things very naturally. We do have paid carers as well.

Could describe Ewan and what he likes doing?

Ewan’s very cheeky. He loves to entertain us by doing something daft or mischievous. We both work at a candle shop, which is a social enterprise designed for people with disabilities. He and I are joint workshop leaders which I think Ewan really enjoys. We’re lucky to have met a nice group of friends, both with and without disabilities, and we go out – evenings at the pub, lunches, an art class. Ewan’s quite social and loves spending time with my husband, Dom.

Ewan is 36. We describe him as being disabled – having a learning disability. He needs a lot of support though he can do lots himself. He uses a wheelchair and doesn’t speak but he has fantastic communication. Ewan uses Makaton sign language, or at least his version of it! He also has some vocalisations – he’ll make sounds for yes, no, and some names that we recognise. He can get anxious in some situations and find them challenging.

How does Ewan’s disability affect his day to day life? What are the things that you, as a family, plan around?

At home he’s just Ewan. If we’re planning a day out sometimes it can be difficult to know what we’ll be able to do, what he’ll find interesting, whether we’ll be able to get in the building, whether there will be a Changing Place. From his point of view, his anxiety affects him. If Ewan’s worried or excited about something he has a lot of spasms in his arm, and that can cause pain.

Do you remember as a child realising that Ewan was different to you and your sister?

We didn’t know when Ewan born that he was disabled. Because he’s the youngest I think my mum realised that he wasn’t doing things that my sister and I had done. I remember being told that Ewan was blind and ‘handicapped’ (as it was in those days), and then he didn’t learn to walk and talk. He was obviously different but I don’t remember it really being much of an issue. I’ve always been very close to Ewan and I’m very proud of him, so people would get told about him all the time! I’ve never experienced anything negative about him being my brother.

To say that my parents weren’t fazed by it sounds ridiculous, but that’s the way it came across. Obviously he needed different things, different care, but it was always more of a practical thing, and mum and dad were very aware of trying to treat us all the same.

Did you choose to be Ewan’s carer?

Yes, I chose it because I feel that it works. It doesn’t really feel like I’m his carer except for the obvious things where we help him physically. It’s just our relationship and it’s fun. The hardest thing for me is stepping back and entrusting somebody else with the role because it can be difficult for other people to know how much independence to give Ewan, for example, and they can be tempted to make a choice for on his behalf or perhaps take over an activity.

Was there a natural progression over time as you took over from your parents?

When my husband and I moved to Scotland we allocated which days each of us would do Ewan’s care and I always wanted more days so we could go and do fun things. Now I support Ewan Monday to Friday and my parents do it at the weekends, though since we live with each other there’s overlap.

My parents know a lot more than I do about Ewan’s medical history and so they are more involved with that side of his care. Ewan used to have more health worries but thankfully since his epilepsy has been under control he’s been better. I am starting to take him to important hospital appointments on my own.

As a familywe bicker a lot, but not over Ewan’s care. I say I don’t want other people worrying about us because of Ewan, but I was worried about my parents and whether they were coping with all the care that they were doing before we moved up here. And now, they worry about me. I think that’s what families do!

What has worked particularly well for Ewan at particular stages of his life?

From the age of six he went to a brilliant school in Sussex. The whole school was geared towards their students, all of whom had very complex disabilities. They did everything, like scout camp for example. Ewan had the opportunity to do so many things, learned loads, and he enjoyed it. He’s not really had the same opportunities since he left school because not everywhere has the facilities.

When we moved to Scotland there were a few disabled children just leaving the high school and there was nothing here aimed at people with disabilities, which is why things like the candle shop came about. I’m talking on Ewan’s behalf here, but I think we’ve been really lucky. It feels like we’ve been in the right place at the right time.

Are there things that have been particularly challenging either for him, or for you as a family?

Ewan does always seem to be quite happy and he doesn’t seem to worry if he can’t do something. I think we lived in a bit of a false sense of security for a long time, thinking that he had everything he needed at home. It’s only since finding the first Changing Places toilet that the penny dropped for me, and I wondered why we were only just discovering them. Noticing how inaccessible places are makes me angry and frustrated. I think we’ve been incredibly lucky compared to many other people, in terms of support and services. We have been in the right place at the right time.

I think that no one talks about the benefits of having a disabled sibling…

I agree, or they do but it’s that ‘inspiring’ thing. I guess it’s hard to appreciate unless it is your experience. I know friends who have had harder times that us – we’re very lucky that Ewan’s health is good. If he didn’t sleep or needed a lot of medical attention our experiences would be different. I feel like we’re very lucky. Sometimes I don’t understand how other people don’t get it and don’t see the world like I do, and then I remember that they’re not all as fortunate as I am.

Do you have any advice for other siblings or for parents of disabled children or adults?

I’m not really in a position to give advice, but perhaps it would be: don’t compare. I’m not a parent but I think we’re all individuals. We’re all going to be the people that we’re meant to be, irrespective of disability. You can’t possibly compare one person to another, or the speed at which they’re doing something. I think my parents knew Ewan was going to be different so didn’t compare or worry about milestones.

I’ve spoken to my mum about it and she was upset when she first heard Ewan’s diagnosis but that’s the only sad thing I’ve ever heard. I sometimes feel like families are beating themselves up for not doing enough therapy with their children, that they think they’re not doing the best by their child, and that’s quite hard to watch. I think what will be will be.

You can find Fiona on Instagram @ewieandfi and on Twitter @fmmchiarini

10 Brilliant Picture Books For Young Children With Disabled Characters

Updated from previous list!

I think these are ten of the best picture books for young children which have disabled characters. They cover a range of characters and impairments. My daughter Molly (age 5) loves all of these but they’re a bit too young for my sons Max (age 9) and Ben (age 11). Some of them are only available secondhand. Some are published in the UK and some are American. Let me know if you have any other books with disabled characters that you love!

I have put buying links where I can, but of course some of them will be available from your local bookshop (you could try my favourite one here)

1 What Happened to You? by James Catchpole & Karen George

Funny, engaging about how a boy, Joe, copes with being asked questions about why he only has one leg. Making friends, imaginary adventures, plus helpful advice for parents about inquisitive children at the back.

Link to buy here

2 Mama Zooms by Jane Cowen-Fletcher

A mother pushes her child around on her lap in her wheelchair – pretending to be a racehorse, an airplane, a spaceship. ‘Mama’s got a zooming machine and she zooms me everywhere.’ Fun, fond, wheelchair-positive.

Link to buy here

3 When Charley Met Emma by Amy Webb & Merrilee Liddiard

Charley meets Emma, a girl with limb differences, and learns that different is okay. ‘’That’s right!’ Emma said. ‘I am a little differenter than you, but I’m a lot the same too!’’ Catchy language and charming illustrations.

Link to buy here

4 Mermaid by Cerrie Burnell & Laura Ellen Anderson

Sylvia teaches Luka how to swim and they become friends. ‘Why are you in a wheelchair?’ they murmured. ‘Because she’s a mermaid!’ cried Luka, ‘and she comes from a palace beneath the sea.’’ Fantastical yet relatable story.

Link to buy here

5 I’m Special by Jen Green & Mike Gordon

Sarah uses a wheelchair and introduces her friends Jo, who loves science and can’t see well, and Ben, who loves swimming and can’t hear. She talks about how people treat her and feeling cross. Introduces lots of different impairments with amusing illustrations. Can be bought secondhand online.

6 We’ll Paint The Octopus Red by Stephanie Stuve-Bodeen & Pam DeVito

Emma has a new baby brother and he has Down syndrome. Her dad says this means he’ll be able to do all the things Emma wants him to do, perhaps differently. Illustrations feel a little dated, but opens up good discussions.

Link to buy here

7 The Adventures of Team Super Tubie by Kristin Meyer & Kevin Cannon

The three superheroes all have different feeding tubes which make them strong enough to fight fires, rescue princesses and catch bandits. Three stories in one book with overlapping themes.

8 Hiya Moriah  by Victoria Nelson & Boddz

Moriah talks about her stays in hospital, her feeding tube, tracheostomy, sign language, and what she enjoys. Comprehensive and age-appropriate explanation of equipment. ‘An aid in my ear also helps me to hear, but shh! At clean-up time, I make it disappear!’ 

Link to buy here

9 Through The Eyes of Me by Jon Roberts & Hannah Rounding

Kya is autistic and talks about all the things she likes and doesn’t like. ‘I love reading books and looking at stickers. But be careful, I also enjoy ripping them up.’ 

Link to buy here

10 Simply Mae by Kyle Fiorelli & Kellan Roggenbuck

Mae has a walker named Wendy which helps her go on brilliant adventures. ‘Little Mae along with trusty Wendy, can always be found in the backyard at play.’ Clear, bright illustrations.

Link to buy here

A Parent Perspective: Interview with Caro

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other parents with similar experiences.

This is my latest interview with a parent who is raising a child who is not typical. This week it is with Caro, who is one of the friendliest people I’ve met on the internet.



Can you describe your family?

There is me, my husband, and our children: a boy of 17, a daughter of 15, and my youngest son is 11. My daughter is autistic and has Pathological Demand Avoidance (PDA).

If you met her, depending on what your benchmark of neurotypical is, you might notice she’s different but she’s quite hard to spot. Behind that facade is an absolute ocean of anxiety. My daughter also has Obsessive Compulsive Condition (OCC, or OCD – whichever is your preference) which is part of the pathological demand avoidance. So whilst her brain is telling her, ‘You’ve got to be in control, you can’t do what this person is asking you to do’, the OCC kicks in and she will say, ‘I’m going to do it, but I’m going to do it my way’. They just fight each other all time and it makes life very debilitating.

Women and autism don’t have the greatest history. For every female diagnosed as autistic there are three males which means that a lot of women are being missed. Women present very differently and the current questionnaire, the system of how we diagnose autism, is based on male research.

Lack of understanding means that when I explain even to the most learned of healthcare professionals my daughter is autistic and has PDA, I’ll get a little head bob, and ‘I’m so sorry’. It really annoys me because that’s not helping anyone – her or the path that lies ahead for others. We need to change that whole conversation.

Was there a moment when you noticed your daughter was doing things differently to your older child?

She didn’t walk until quite late but I wasn’t overly worried. She was doing this thing as a toddler where she would turn my face to speak to her. I had previously looked after a little boy who’s deaf so I thought she had hearing difficulties. We took her to see a doctor and he said she has really bad glue ear but it will clear. When she started at nursery she was speaking and walking but she wasn’t socialising the way my son had. I went to see another paediatrician who wasn’t that worried and at the bottom of the note that he sent to my GP, it said ‘Mother worried’.

I’ve got a lot of ‘Mother concerned’ notes and it wasn’t until she was in year two that somebody started to take it seriously. By then she was on her third school. We had a terrible situation where she was being treated terribly by one of the members of staff in a verbally abusive way. My daughter had been told she was stupid, he would rip work up in front of her. He sent her down from year one to reception class. We removed her straightaway but I think that had lasting effects on her.

She was diagnosed with audio processing issues when she was seven but we started seeing more people privately because the waiting lists to get a further diagnosis were years long. When she was nearly nine she got the diagnosis of autism, and a year later, a diagnosis of pathological demand avoidance. By then her issues with executive function were obvious. She was still in a mainstream school and masking a lot, so a lot of what we were being told wasn’t really fitting with her behaviour at home.

At one stage as a family we didn’t go out socially for about a year, not because we were embarrassed about her behaviour, but because it was so upsetting and difficult for her. We would parent the children almost separately, so my husband would sometimes take the boys and I would take my daughter. I think that was an error – I think siblings should be exposed to it all – but at the time we felt it was a lot for us and for them. My husband played sport for a living and therefore he worked at weekends so I was on my own a lot with all three.

How do you approach language around autism?

I listen to autistic people saying, ‘This is how I want to be addressed,’ and I use that language in my family. I’ve always felt that communication is the key. Where you don’t have information there is a void, and people can fill it with anything they want. There is no embarrassment to any of my daughter’s diagnoses.

How do you judge how much to share about your daughter?

I don’t want to give too much of her away, because I think she deserves her own social media footprint. I think we want to make sure that we maintain a level of respect for the person that we’re raising, because I would hate for my daughter to read or see something upsetting. But I felt very lonely for a very long time, because there were no other parents at her original schools that were in a similar position, and it felt very isolating to me. When I started sharing on social media, people said, ‘Me too’, and it felt less lonely. It’s a difficult line and I often sit back and take a break, but there are phenomenal support groups on social media.

I realised, probably a bit late, that I was putting her face up and then rethought. I definitely was guilty of saying, ‘Oh, woe is me,’ a few years ago. What I didn’t do enough was sit and listen, because my daughter isn’t the first autistic person to be born and she won’t be the last. I’m listening to autistic people because I can talk about my learned experience as a parent or carer, but I can’t speak about what it’s like to be autistic. Most of the information that we have has been from healthcare professionals that are neither autistic nor raising those that are.

How has your approach to your daughter’s autism, or parenting, changed over the years?

My daughter had a lot of behavioural issues when we were out when she was younger (which makes perfect sense now) and my eldest son found that exceptionally challenging. I was saying, ‘You go and play with your friends, everything is fine.’ I didn’t really know what I was dealing with and didn’t feel supported, even though I’d read every available book and seen countless doctors. Actually what I was lacking was self-confidence. When I read your book, I saw you got your confidence early and I envy that.

Anyone that’s ever been into a meeting with their Local Authority will know it’s probably one of the most terrifying things you’ll ever do. I remember sitting in a meeting about her, listening, and when I walked out I said to my husband, ‘They’re all completely wrong about her. I’m never going to go into another meeting so ill prepared again.’ The next year I spent weeks preparing for the meeting and handed a booklet of papers out to everyone. I said, ‘I’m really uncomfortable with the language that you’re using.’ I corrected things that were wrong. It’s not about dismissing what professionals are telling you, it’s that not everything will apply to you and it’s about getting the confidence to pick and choose what will help your child and your family. I think that starts with looking on social media or reading a book or finding people in similar situations.

My husband, Will, is the most incredible support. I’m the primary carer and I struggled with not earning money for a long time. I didn’t want to be a burden but I undervalued what I was doing because caring isn’t valued by society. When I’ve sat through those hideous meetings thinking I can’t do this, he’s there saying, ‘You absolutely can.’

My husband and I are very different. I am over communicative, he under communicates. We are polar opposites in lots of ways, but our life goals and the way we raise children has been in sync. I do think there is luck involved. My family are really important support to us – especially my mum.

I get messages from people saying their family members have criticised how they parent their autistic child, how they should be firmer. How can people not see how unhelpful and damaging that can be? I remember someone very early on into our daughter’s diagnosis a friend sending me a link to an article about how to cure autism. It’s what’s called ‘soles of your feet’ behaviours – things that you can’t see that you do, that you forget are there, but they’re part of you. If people that love my daughter will say or send things like that, then heavens only knows how we’re ever going to make the path less challenging for her and people like her.

No child comes with a book of instructions. I spent far too long looking back and thinking we should have done things differently. I think that would be the advice I would give myself now: you’re doing the best you can at the time. I think we made terrible errors with my daughter when we didn’t know what was going on, where I was telling her off for doing something she had no control over. I didn’t know what else to do at the time.

Do you think there are things that you’ve learnt through parenting your daughter that have changed the way you are with your other children?

Yes, definitely. There are loads of things that my daughter has taught me that has made me a better mum. I’m much more patient. I now always listen first, there is absolutely nothing off limits. I think I would have been far more staid had it not been for her and the way that she is. I have seen now that behaviour is communication so rather than reacting straightaway, I’ll ask, ‘What’s going on?’ My daughter taught me that trying to fix things is no good when the situation is full of anxiety, noise and stress.

How has parenting changed you over the time that you’ve been doing it?

I think I am a much better person. I used to look back and regret a lot. This is not how I thought my life would be – not being negative, it just isn’t what I expected. I am now more than okay with that. It’s absolutely wonderful.

I think as carers we sit on a tightrope between our children and people that aren’t like our children, and we want society to meet a little bit in the middle. I want people to understand that it can be difficult, like any parenting, but there are so many incredible parts. I’m trying to listen to autistic people whilst caring for someone that is autistic, whilst not being autistic myself.

I wouldn’t change my child, not for me, but I’d take away some of her anxiety and her challenges if I could. My daughter has changed us all and she is glorious and brilliant (with splashes of, ‘How are we going to deal with this?!’) My boys are better humans because of their sister. My husband is entirely different to the man that I met 25 years ago. I absolutely wouldn’t change a single tiny hair on my daughter’s head. I am so glad that I am her mum.

You can find Caro on Instagram @spikey and Twitter @CaroTasker

A Parent Perspective: Interview with Fay

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other parents with similar experiences.

This is my latest interview with a parent who is raising a child who is not typical. This week it is with Fay. We became friends when Ben and Caleb were small, and Fay and I were trying to work out how to be parents.

Note: includes a description of pre-term birth.




Can you describe your family?

We’re a family of 3, plus a grandparent. I’m a single parent who works part time with a 5 year old, Sarai, and an 11 year old, Caleb.
 
How would you describe Caleb?

Handsome! He’s so affectionate, nothing phases him. For example, he can usually use his iPad but today his arms are a bit all over the place so he can’t, and he’s getting us to work it for him. That’s what I admire about him, no matter what he’s been through, he just continues to smile.  

He loves YouTube, reading, lying in bed listening to the radio – only Capital radio! Thankfully he was born in this generation where there’s all this technology, otherwise I don’t know what I’d do!
 
Caleb’s not able to walk, sit unaided, feed himself or get himself dressed, but he gets by. He’s got people who will get him dressed, feed him, help him look good. He uses a wheelchair.
 
When did you first realise that Caleb was going to be disabled, or have special needs?

I went into labour at 21 weeks. When they examined me they said I was miscarrying and I burst into tears. I asked when it was going to happen. They said it wouldn’t be too long and put me on bedrest. A consultant in pre-term labour came to see me after a scan and said, ‘I’m really sorry you are miscarrying, but you’re young, you can always try again’. I was just waiting, worrying, and nothing happened.
 
Then the bleeding changed and I felt Caleb move for the first time. There was nothing I could do. I went into labour one night, and Caleb came at 23 weeks exactly. I thought he was dead because I couldn’t work out what was going on. I just saw this red ball and I didn’t want to look, then they took him away. They said he was alive.
 
But that’s when the problems started because he was in NICU and really unwell. Other children came in after him but then left hospital and we were still there. I became a mini-nurse, watching all the screens. We were discharged in October after seven months. In January we had a community paediatrician check-up and the doctor said, ‘Have you heard of cerebral palsy?’ and I just cried. I started looking at him differently. I had been thinking he wasn’t sitting up yet because he was premature. Then all these healthcare professionals started coming in and out of our lives and I started noticing a bit more.
 
For Caleb cerebral palsy was just the fact that he couldn’t sit, walk, he couldn’t really talk. Every time he went into hospital it was always to do with oxygen, because he had chronic lung disease. He was actually doing alright – he was rolling. You’d wonder where he was and have to follow the oxygen tube round the house, find him under the table! That threw me when he was later in hospital after hip surgery because that wasn’t to do with his chest. I’m used to him being ventilated, but that time it was different and unfamiliar.
 
In what ways is your life now how you expected it to be, and how is it different?

I didn’t really have expectations. I got pregnant at 22, had Caleb when I was 23. Life now with Caleb is great. Once you start having a better understanding of disability, how to manage it, have a relationship with your child – it’s kind of like having super-powers. If I was to do Mastermind in Caleb I’d ace it! It’s just one foot in front of the other, learning to be content with what we’ve got, being proud of ourselves for what we’ve endured. I think acceptance takes a while. I think the acceptance is 99.9% there for me and things have fitted into place. I’ve learnt how to manage, how to adapt.
 
There are highs and lows. Caleb’s always happy, and it’s me who goes through the emotions. There are days when I feel like I’ve got this – I know what I’m doing with meds, baths, feeding. And then there are days where I just don’t want to do it. I can plan like everyone else but things don’t always go to plan, illnesses come on all of a sudden. Sometimes I get a bit of anxiety. I try not to think long term. I get on with it but I’m thinking I don’t think I’ll be able to lift him in a year’s time. I’m being an advocate all the time.
 
How do you think raising Caleb has changed you?

He’s changed me for the better. When I was growing up I was quite insecure but having Caleb has given me confidence. I don’t take any crap because I’m fighting a battle every day. It’s made me a stronger person, as well as more emotional. People used to say ‘When Caleb goes to school you won’t be able to be there to fight his battles’, but I’ll still be there, fighting all his battles. I didn’t think I had it in me.
 
How much of what is difficult in your lives is to do with people not helping in the way they could, rather than Caleb’s disability?

The lack of understanding, even from family members, is difficult. Sometimes Caleb says something and they ask me, ‘What did he say?’ I’m thinking he’s sitting right next to you and understands you. Why can’t you say, ‘Caleb, why don’t you say that a bit slowly because I didn’t hear you’ If I’m there I will intervene and Sarai will say, ‘He said this…’.
 
In my culture there’s a thing of ‘God will help, God will see it through’. So if I say we need to do something, people say, ‘No, you’re being defeatist here. Where’s your faith?’ I have faith, but you have to help yourself. Caleb has glasses and people say he doesn’t want to wear them so don’t put them on, but I’m his parent and he needs glasses. I know my kid better than anyone. Maybe because I don’t have a partner, it’s like they still don’t see me as an adult. It frustrates me because I am the adult – I’ve got two kids.
 
There are some professionals that are really clued up and there are some that aren’t. We’re fortunate that we’ve got good relationships with our health professionals, really good ones that I can have a proper conversation with. I think sometimes if you’re really difficult they put you at arms’ length and you don’t get the support you need. You’ve got to be open with people and tell them how you’re feeling. I find with healthcare if you don’t ask, you’re not going to get.

How much do you think your age affected the way people treated you as a mother? Do you think people underestimated you?

Sometimes I’d be at an appointment with my mum and they would talk to her, not me, and she can barely speak English! I think people underestimated me, sometimes in a patronising way, where they were like ‘Don’t worry, in time you will get it.’ As if when I’m 40 I’ll suddenly get it.
 
With doctors there’s a spectrum. You get some that are bubbly, keen, really engaging with the kids. And then you some who have minimal words, no social skills, who look more uncomfortable than me. You get the really nice nurses who ask you how you do things, and ones who aren’t like that at all. You meet so many different types of healthcare professionals. I’ve learnt to ask the questions I need to ask.
 
When Caleb started school aged four the headteacher asked, ‘Does Caleb need all of this?’ waving her arm at his equipment. And I said, ‘Yes he does. Every single one. Do you want me to tell what it’s for?’ She said, ‘Oh no, it’s fine, it’s just a lot of space’. I said that’s not my problem and from then she didn’t like me. When Caleb got a specialist buggy she said we couldn’t leave the buggy outside the classroom. I said, ‘You know Caleb can’t walk so how do you expect him to get home?’ People think you’re being difficult, but actually it’s them not thinking before they speak.
 
What do you wish other people knew?

I was the first in my group to have a baby and no one understood the severity of what I was going through. People say, ‘Fay you’re always smiling, you just get on with it’, and yes I do but it’s really hard. I have to make appointments, chase up test results or a new piece of equipment, or something is broken and I need to get it fixed. There’s so much to organise.

People haven’t offered support – even just to come over and hang out. Some people are intimidated by his feeding tube but it’s not complicated. Caleb isn’t fragile, he’s like any other kid. Please just treat him like a normal child. I’ve been at people’s mercy a lot which I don’t like.
 
I also wish people thought more about emotional wellbeing. I wasn’t put in touch with other parents of disabled kids. I was lucky to meet other parents at a conductive education charity. I struggled with not having a support network. Once you’re in your own four walls, no matter what you’re going through, you always feel like you’re the only one going through it.
 
I wish Caleb had more social life and friends. With Sarai, Caleb has come out of his shell a bit more. He mimics her, they wind each other up and it’s so nice to see that. Sarai’s never known any different. If Caleb and I go to pick Sarai up from school, she runs up to him. Sometimes she does notice when people stare and ask about Caleb, but if her friends ask a question she’ll just answer it: ‘That’s his wheelchair.’ I’ve explained to her he’s disabled and she used to say ‘be-abled’. She wants Caleb included. I think that’s why they’re so homely because the love they get at home is enough for them.

Time Travel

Almost two years ago Ben went on a school trip. He left on Monday morning and returned on Friday afternoon, and we got some messages inbetween but we were otherwise largely oblivious to what he was doing. We knew he would be okay – we trust the school staff, and his usual night carers travelled with him to be there if he woke – but it was still strange. Not because we were away from him – we have often left him with family or carers. But because he was away from us, which is unusual.

There is an expectation of linearity in childhood. Babies are expected to reach developmental milestones and then continue to tick life stages off the list: walking, talking, starting school, being left at other people’s houses, riding a bike, sleepovers, school trips… Through these stages there’s a distancing of the child from their parent – probably not entirely smoothly (my children often pull away from me for a bit and then return close for a while, before pulling away again) but there is a broad direction of travel. They become more independent both physically (Max no longer needs me to tie his shoelaces) and mentally (Molly will take what her teacher has told her to be true over anything I say). If children have siblings there is an expectation that they are like a little chronological train – the first child makes their way along the track and others chug along behind.

For Ben the path is less linear – in some ways he is right on that track, wanting to watch 12 Certificate Marvel movies rather than the more gentle films I encourage, preferring to listen in on adult conversations than be at the bottom of the garden with his brother and sister, and learning from and communicating with teachers, carers and TV programs as much he does as with me and James. But in other ways, particularly physical, Max overtook him a long time ago and there are ways in which Ben will always be dependent on me and James (or other adults) to help him.

Time, and our family’s passage through it, is not progressive in the way that I had expected. I entered into parenting expecting linear development of my children but it won’t be like that. Ben entering his teens will have no effect on his ability to walk away from me, and yet he is becoming more mature and bursting out of his unadjusted wheelchair. The ways in which I am his mother are in some ways completely different to when he was little, and in some ways (feeding, dressing) exactly the same, so being his mother concertinas time in a way that feels, as Ellen Samuels has said, like time travel.

Ellen Samuel’s essay, Six Ways of Looking at Crip Time, talks about the ways in which time shifts or stretches when you are disabled. It’s a brilliant essay that I would recommend reading – an eloquent insight into how disability affects so many aspects of life beyond the solely physical.

From the essay: ‘Crip time is time travel… Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently – or not so silently – at the calm straightforwardness of those who live in the sheltered space of normative time.’

This made me think about the ways that being Ben’s mother doesn’t conform to the linear path I had been told to expect, because he is disabled. Being Ben’s mother is a process of undoing assumptions, and it’s near-constant work because the world tells us that the right way is chronological and cumulative, and that these things indicate progress. At the beginning, having a child who didn’t do things in the order others did was disorientating. It’s not any more.

Ben will lead the way for Max in some ways (he already has a smartphone, as Max reminds me near daily), and in others he won’t. He will go on school trips, but people will still ask us if he goes to school. He will continue to grow and need ever larger clothes, yet sometimes people will speak to him as if he is a baby. The issue isn’t with Ben, it’s with the ways some people struggle to compute his difference. I can get my head around it, and have, but we are continually butting up against other people who are confused by Ben’s developmental time travel, and express it. I can’t know what that feels like for Ben, but it is annoying as his parent.

Reference: Six Ways of Looking at Crip Time by Ellen Samuels, in Disability Visibility: First Person Stories From the Twenty-First Century edited by Alice Wong.

Link to buy from Bookshop.org here