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.