baking, princesses and family life with Bea

Bea, at six years old loves baking, princesses and her younger brother, Gabe. She also has Down syndrome. Her mother, Avril, talks about building a family from the most unexpected parts.

The thing about Bea is that, in so many ways, she’s just like other little girls. Princesses, make-up, all of these clichés. She really loves baking. She’s quite the cook, actually. All these stereotypically girly things that, in another situation, we might try to steer her away from—but she’s very determined when she sets her mind on something.

As her parents, if what we want to do doesn’t coincide with her own priorities, Bea will spend a bit of time thinking about whether she’ll acquiesce to our needs or go full-throttle for her own business. She’s recently worked out the key to mollifying us, though. She’ll look at us and, in this very proper voice, say, “Oh, I’m so sorry about that.” And then she’ll keep doing what she was doing! It’s like, “I said sorry, so we can all move on now. Stop holding on to the past, Mum and Dad.”

It’s in her language where you really see the difference. Bea still doesn’t speak clearly, and her vocabulary is limited. You see these other six-year-olds and they’re quite capable of expressing themselves and what they want, and it definitely reminds me that, oh yeah, my daughter does have Down syndrome.

We didn’t know that Bea had Down’s until after she was born. I was 30 when I got pregnant, and the ultrasounds suggested we were low risk, so the possibility hadn’t even occurred to us. Then she was born and she was tiny and bony and I looked at her and I thought, Oh my God, I’m one of those mothers who can’t love her child. I think my child looks odd. And then all these alarms went off and suddenly we’d gone from being in an empty room with one midwife to what felt like half the hospital coming in to have a gander.

Those first hours were strange. Hospitals are their own universe, obeying different rules to regular life. You’re dazed and confused from the birth, and no one will give you a straight answer to your questions. They’d taken Bea to the ICU, so all I had was that first glimpse of her. But our suspicions were growing, and we kept on asking until someone told us that, while they still needed to do more tests to confirm, they were 95 per cent sure she had Down syndrome.

I remember being handed this joyless grey pamphlet about having a child with Down syndrome. It seemed like they’d specifically styled the children to make them look ‘special’, with these awful fringes and ugly scrunchies. It just reinforced every negative association you have about disability—that your life is going to be terrible and hard from here on in. I don’t even think we could bring ourselves to read the fucking thing.

That feeling stuck with us for years. I found it impossible to ignore the way other parents would look at Bea and then look at me, wondering, presuming. She was so tiny for such a long time that people would stare. I’d dress her in these beautiful clothes so that I could tell myself they were jealous of her outfit, not concerned about my seemingly malnourished child. It sounds ridiculous, but when you feel that fragile about your place in the world, you erect artificial barriers to say that this is who we are and that it has nothing to do with anyone else.

We can thank Gabe for snapping us out of our funk. We had Gabe a couple of years after Bea. We were a bit hesitant to begin with, but a lot of doctors and friends had told us that having another baby would help. Mainly because that’s when the craziness really kicks in. There’s a saying that going from one child to two is like going from having a pet to running a zoo, and that was certainly our experience. Bea had been quite a happy and easy baby, so it gave us lots of time to dwell on things. And then Gabe was born, and suddenly I had no time to think about anything because I was just trying so damn hard to keep everyone alive.

Having Gabe really put things in perspective. He was quite bright and doing everything far too quickly. At six months, Gabe was already crawling and tearing around the house, whereas Bea didn’t walk until she was two. Gabe grew out of his clothes in a few weeks, while Bea could wear the same outfit for a year. I spent two and a half years toilet-training Bea, but Gabe got it in a week. It took everything we had just to keep up. But I guess that’s parenting for you.

We have an understanding with Bea. She doesn’t struggle to communicate with us in the same way she does with other people. We use a mixture of speech and sign language because she has hearing impairments. She lip-reads really well too. But when she first went to school, it was tough. In retrospect, I think we were incredibly naive, but for the first year she didn’t have the right support and we didn’t know how to talk to her teachers to make that happen. So you’d have these situations where Bea was being herself, but it would be interpreted as her being disruptive. We were telling her teachers, “Bea doesn’t seem happy.” And they’d tell us, “Well, she only does what she wants to do.” And we were like, “Everyone loves our child—what are you talking about?” It was the first time we’d ever heard anything like that. She’s diminutive; she’s quite cute; she’s funny. How could anyone not like her? It was such a shock to our system.

Amazingly, Bea’s still at the same school. It was hard for everyone, and we had to have a lot of very difficult conversations. But then they turned it around. The last twelve months have been incredible. She’s done really well, and I think the adults have now started to realise that it wasn’t Bea creating the problem—it was them. Bea’s not the only special-needs kid at the school, but she’s one of the few who comes with a really clear label. So seeing how her situation has turned around has helped the school realise that some of the other ‘naughty’ kids might not actually be that naughty. They might just need more help.

The best thing about Bea being at school is seeing how she’s been brought into the community there. We live in a tiny village in Norfolk, and Bea is the only child with Down syndrome, but the other families have been so welcoming. The first time she was invited to another kid’s birthday party, I cried. But now it happens all the time.

Bea and Gabe have become great mates. Or at least they are when they’re not squabbling. But in general, they get along really well, and he’s helped bring her out of her shell. We’re approaching an interesting point now, though, because Gabe’s beginning to overtake her developmentally, which is producing some uneasy questions. He recently asked me, “Why can’t I have Down syndrome like Bea?”—because he’s seen how that seems to be the ticket to doing whatever the hell you bloody well like.

We want to be really fair with both of them, but there are times when Bea simply does need extra care. We try and talk through the whole thing with Gabriel: “Look, you can count and you find counting easy, but Bea finds it really difficult. And sometimes these things make her frustrated and cross.” We’re going through a phase where there’s a lot of talking about that. I’m trying to get Gabe to understand how we’re all different. That’s quite a mammoth task.

In general, though, we’re a happy family. We have a good time. We’re quite frequently in stitches, like all families are. And we wouldn’t change Bea. It’s really good to have her, just the way she is. It’s the only life we’ve known, and most of the time it doesn’t feel like we’re any different to any other families. No one listens to me. Getting to school in the morning is chaos. We have our share of doctor appointments and behavioural issues, but so do plenty of kids. So we’re not as far apart from other families as people might think.

One of the big differences between when we had Bea and now is that we can go on Instagram and find loads of happy, beautiful families with children who have Down syndrome. I think back to that first, dark January morning when we got that awful pamphlet. Everyone was apologising. They were so sorry. It was a tragedy. Of course we were devastated! But now there’s this pride and strength in sharing our families with each other. It’s almost like rebranding. So many people are so proud of their Down’s family and want to tell the world that you can still be yourself and have a child with Down’s. It doesn’t completely destroy your life. In fact, it can actually enhance it.

Bea has taught me that even though I’m well-educated, my little world was quite narrow before she came into it. I didn’t realise how narrow it was until she showed me how much of what I thought I knew came from presumption. But while things are great at the moment, it’s hard not to be focused on the future. I look at Gabe and I’m pretty confident that we’ll get him through school and push him off to university, maybe send him travelling. But he’ll always have a degree of independence—and we don’t know what’s going to happen with Bea.

Like all parents, I hope that Bea gets to do something she really wants to do. Her baking, or her painting. She’s a really capable, assured child. Someone told me recently that there’s no reason she shouldn’t have an amazing life independent from us. But it’s that element of not knowing, because you can’t map out a future for her. Maybe she’ll be with us forever, and you have to be okay with that.

But I also worry that the world might be too cruel for her. We’re already starting to see that as she’s getting older: not everybody responds to her as well as they once did. Bea’s so friendly that sometimes she’ll march up to a stranger she likes the look of and tap them on the hand. But people aren’t always open to that, and when they shut her down it crushes my heart. But that’s life, isn’t it? We put ourselves out there, and then people are quite awful to us and you end up feeling like an idiot. I’d like to shield her from that, and Gabe as well, but I know I can’t. It wouldn’t help either of them, even if I tried. I just hope they find their way and know we will support whatever it is that they want to do.

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