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.