Okay Not To Be Okay

“I have four children. A boy who’s twenty-five from my first relationship, and a little girl, Evelyn, who's eleven. Then from my husband I've got Theo, who is now six, and Henry, who is five. I met my husband and after many miscarriages, we finally managed to hold on to Theo. He was born at thirty-eight weeks. We had a bit of a rocky ride with him at the beginning. He was in ICU for a bit, he had prolonged jaundice, and he slept for the first twelve weeks of his life. And then at twelve weeks he woke up, and he's never been asleep since. Literally.

Henry was born when Theo was fifteen months. It was at that time that I realised that Theo was quite quirky. I had my suspicions at the beginning, because of the sleeping for twelve weeks. And then he didn't like breastfeeding. He didn't have that bond. He didn't do kisses. I started noticing these little quirky things. He would lick everything, anything that was new outside. So if there was a new pavement being laid, he'd lick it. I noticed as young as two that he couldn't communicate his frustration in a good way. It was always violence. Even at a young age he wanted so much routine. If it was broken, then the meltdowns were something I'd never experienced with my first two children. They were above and beyond meltdowns. And he didn't sleep – at all. He was up every hour.

Anyway, the months went by, and I kept in contact with health services, often saying ‘There’s something not quite right.’ I rang once and said ‘I cannot cope with him.’ I actually don't remember much after that. I just kind of blocked things out, I seem to have missed a six-month period in my life. Then I had a meeting with the paediatrician. That’s when they diagnosed the autism. And then the school got involved and referred me to Home-Start. That's when my saving grace came along, and Wendy called me. We had an interview and it just all went from there.

I'm still very angry. At the beginning when I reached out for help from health services, nobody contacted me or touched base for two weeks. My husband and my mum tried to sort of keep me together. And I think that’s when I went to the GP and he put me on some anti-depressants. It’s difficult when you finally get the courage to kind of reach out to somebody and then you’re ignored. When I reflect back now, I just think I could have been a single mum living in the middle of nowhere with no friends and family. But I'm so lucky that I do have great family and a great support network with my friends.

With Theo I was just finding life challenging. It was like treading treacle every single day. I didn't quite understand him. Even between me and my husband, things were really bad. My husband's got Asperger's, and he doesn't quite understand Theo himself, although they're very close and they understand each other's silence. But he doesn’t understand his needs. And so it broke down the family. We’re still together, but it was a really stressful situation. My daughter was saying she wanted to go live with her dad. Theo was just so needy, twenty-four hours a day. And once the anger and his aggression kicked in, it just made family life even worse.

We can’t leave them on their own, nothing. And I think that's what's so exhausting. You know, we're not a family that can run the bath, they both get in and I can put the clothes away. Because the last time I did that, Theo tried to drown Henry. Henry is very scared of Theo at times. And then I have that guilt, that I'm allowing him to bully my other children. Theo set fire to the house a couple of weeks ago. Luckily, it stayed contained in the kitchen. But you know, it's just constant. Where’s Theo? What's he doing? You get yourself in a right old tizz. And then you think right, tomorrow, tomorrow's the day – I'm gonna be a really good mum tomorrow. And then within half an hour of getting up, Theo’s smashed up the house, told me I'm a fat cow. And I'm like, ‘Yeah, I'm done now, see ya!’

I spent so much time not wanting my life, wishing I'd never had him, wishing things were different. You then go into that mother's guilt, ‘I can't believe I ever thought that, why would I wish that?’ But there are times where you just want to pack your bags and run away. I think in so many situations parents feel like that, that ‘I can't do this anymore.’ But they would never say it.

That’s one thing I’ve learned. I have to say it, how it is now. This morning was a bad day, the usual refusing to go to school, the shouting, the aggression, smashing up the house, not wanting to get dressed – and that is every single day. After the school drop off, I go to my sister-in-law’s and we drink coffee, or we talk outside the school gates, just sort of rant, rage, talk about it. When I have a bad morning, and I feel very tearful, and then I speak to my friends, it just makes me feel a bit better. People need to start coming forward.

We couldn't function as a normal family. I couldn't go out with my children. My daughter wouldn't come out with us because if Theo kicked off, she’d get embarrassed. And I hated people looking and staring. You just know society is judging you. So I just stopped doing stuff, I’d go to the park and pray to God that he didn't hurt a child, and that was pretty much all we ever did. So when I knew I was gonna get a home support worker from Home-Start, I said to the kids, ‘We can go out, we can do stuff now as a family!’ And then bloody lockdown came and everything was done over Skype. I was so gutted.

But what I found useful was that with Jude, my first home support worker, it ended up being like a counselling session for an hour. I could just be so honest, talking about how I feel guilty that I resent him. Or things that I needed to do, like find out more about his sensory processing disorder, but I never get the time, she would do that for me. It was just a little bit of extra weight lifted off my shoulders.

Then Jude moved away and I got Jane. She's lovely, and she gives me hands-on support, she will meet me places. I've always wanted to take the kids to our local café for a hot chocolate. But I can't do it on my own because Theo’s a runner. So we did that one time. And then I always struggle leaving the park, because Theo will run and then I'm left with Henry and Evelyn. So she started every Friday coming to the park with me.

The Home-Start support’s ended now, because of the age thing, now we don’t have any kids under five. I’m gutted. It was just so nice, someone actually thinking about us and our daily struggles, it was just nice to know that people were there caring for us. Jane one day said to me, ‘I don't know how you do this every day.’ It was just nice for someone to acknowledge how bloody hard having a child with additional needs or any child that's got problems is, it just absolutely consumes you. It’s just a roller coaster. There's days I just feel so sorry for him. And then there's days that I could literally drop him off at Social Services and say ‘Don't bring him back.’ Because it's just exhausting mentally.

But with the support I’ve had, I think Jude taught me I am a good mum. And Wendy’s been like my big sister. I just felt like she had my back. And Jane's very much like you’re doing a great job, we can do it. So she gives me the confidence. It's not my fault, and it's okay not to be okay. It just taught me that these negative feelings, this resentment towards Theo, in periods of my life was normal. You end up spending all night laid in bed crying, thinking, ‘I'm such an awful mum.’ And I just have to think, ‘Well, my other three kids are okay.’ So I didn't do that much of a bad job. I am a good mum.”