From first thing in the morning to last thing at night. It’s constant. Always there. Even when she goes to bed, the worry never goes away.
The time’s getting close, now. In a year she’ll be 16, and lost to the system, so we need that diagnosis, to give us that safety net. Some sense of assurance, at least, that she is known about. They say autism is much less common in girls, so maybe that’s the problem. But just because it’s less common, that doesn’t mean it never is.
I’d promised myself I’d have the last one when I was 30. To be honest, we couldn’t afford any more for a while. I was hoping for a little girl. With two boys and a husband, I needed an ally. The boys were hard work. In a good way, I mean, but hard work all the same. A girl would be a blessing.
It sounds silly, I know, but I knew it was going to be a girl. It felt different than with the boys. She felt livelier, wriggly. I could always feel her there. And I was right.
I had a book of names, and I said them out loud to her. When she smiled, I knew I’d found the right one for her. The middle name was easier. We named her after one of my husband’s relatives, a beautiful, vibrant, lovely woman. No matter how old she got, she was always young.
The worries didn’t start immediately, but once they did start, they never went away. They only grew. I know you always worry about your children, no matter how well they’re doing.
This was different though. Little things at first. She wasn’t like the boys. She didn’t meet her milestones. She couldn’t sit up. She couldn’t crawl. Her feet felt different; they were too soft and flexible, as if her bones weren’t forming properly.
When she was about 12 months old, I went to the doctor. It’ll come, they said. She’s just a late developer. Stop comparing her with the boys. I’m not blaming anyone.
Support
Someone at work mentioned this thing – hyperflexible limbs – and told me to get a referral to the appliance centre at the hospital. We got her some wee boots. Beautiful they were. They had metal inside, to support her feet. Not that you'd have known it to look at them, although if she gave you a kick, you knew then all right.
Within a week she was up and away. Two years, two months she was. Then there was the eczema. She had to be wet-wrapped. Another girl at work – it’s so often like this – said to get her tested for allergies.
Milk, eggs, peanuts, pork: I cut them all out (she can eat them now). The eczema cleared up. She was around three and a half. I left work so I could look after her. She needed so much attention. I began childminding, so I could care for her and still earn. That was when I started seeing the differences really starkly.
The other children were chatty and inquisitive. They played together. My little girl said next to nothing. She was shy, and she played house, on her own. She wouldn’t draw or do any colouring in, not unless I carried her over and opened the book and put the crayon in her hand.
You could see her fine and gross motor skills weren’t there. I know all the terms now. There was a delay, in her reactions and responses, in her development. It was working with children that showed it to me. When the alarm bells started ringing, it was like a fire engine away in the distance. Then it just started getting closer and closer.
I remember going to get her from nursery one day. All the children were playing in the yard – screaming, laughing, yelling, like kids do – and there was my girl, off by herself, walking up and down this flight of steps that led out of the building. Up and down, up and down, over and over again, aware only of what was happening inside her head. Silent.
That was years ago now, of course. We’ve been to doctors, we’ve argued with schools, we’ve read articles, searched the internet, we’ve got reports and forms and letters, and photocopies of reports, and forms, and letters.
Glued to me
It's tiring. It's hard to say that about your own child. She's glued to me, doesn't have the confidence to step away. I can always feel her there. And all she wants is a friend. There's a girl at school that she arranged to meet in town one Saturday. She was so excited, giddy really.
And then, of course, this other one didn’t turn up, and my poor, little girl couldn’t figure out why not, and I had to put her back together. She’s arranged to meet her again, and the same thing will happen again, and I’ll have to put her together again.
People with autism struggle socially. They have problems with social interaction. They take things literally. They miss cues, they don’t understand. They don’t get sarcasm. They don’t get jokes. They repeat things.
This is what it’s like with her, anyway. It can show up in different ways. She repeats things. Over and over again. And things stay with her. And she takes things so, so hard. She can’t shrug things off the way other people can. Everything is 10 times more.
She’s a sweet, caring, loving wee girl who doesn’t see badness in anybody and who just wants a friend. I wonder if she understands or knows. She’s in her world of her own so much of the time, staring at pictures of popstars for hours on end.
It doesn’t stop, and so I can’t stop, either. I have to keep learning, keep finding out. There are things I do; I call them strategies. If there’s something she doesn’t want to do, or something she’s shying away from, I change the subject completely.
I talk to her about things she likes, things we’ve done together that she enjoyed. Then very slowly, I bring her back to the problem and hope she’s ready to accept. It works. And then there are days when it doesn’t. If she has her favourite things with her – her pictures, her iPad – then she has a bit of security. They calm her.
It’s not all bad. Don’t think that. She goes to a club called Young People Together, run by Mencap, an organisation that supports people with a learning disability and their families in Northern Ireland. They understand her there, and she doesn’t need an official diagnosis to attend.
And the school she’s at now, well, it’s wonderful. They give her time and attention and she they let her mix with the other boys and girls. They know if she refuses to do something, it’s because she just can’t do it. It’s not badness. She stood up in class not long ago and read out loud. It doesn’t sound like much, but that was a miracle.
In conversation with Dominic Kearney.
To read more about autism, with advice, personal stories, research and resources, see irishtimes.com/thehealthcentre
World Autism Day is on April 2nd
