Coronavirus and domestic abuse

This afternoon, when my wife brought my kids back from visiting [redacted] in spite of the lockdown, my two-year-old asked me to leave the lounge and go into my office – she didn’t want me in the room while she watched Paw Patrol. I’m pretty sure she learned this behaviour from her sister, my four-year-old, who in addition to wanting me out of the room most of the time, has also made it clear she wants me to sleep downstairs from now on.

Why do my kids want me out of the way? Because they’re being poisoned against me.

And there’s not a damn thing I can do about it.

This blog post is a confessional. I didn’t want to reveal the full extent of what’s been going on out of respect for the parties involved. Now, I don’t care anymore. Domestic abuse is wrong, whatever form it takes. I might be a man, with a beard and a few extra stones around my middle, but that doesn’t make me any less a victim.

In order to keep it on point, because it’s long, I’m only going to focus on the lockdown. Stuff that happened before – extorting money out of me by threatening the children, for example, or throwing drinks over me, or attacking me with scissors, or hitting me while I was driving, or saying she’d abort my baby if I didn’t do as I was told – is water under the bridge at this point.

As I’ve mentioned before, as soon as the lockdown started, I became Public Enemy Number One to my wife and her family. When the Prime Minister told us to stay at home and not visit anyone who didn’t live in the same household, I took that as it was meant. My wife, on the other hand, took it to mean ‘keep visiting everyone despite living in three separate households’. Because the rules only apply to other people.

As someone who believes in doing what’s right, I was adamant we’d respect the lockdown. I was therefore horrified when [redacted] turned up on my doorstep a couple of days later. When I didn’t let her in, much shouting and crying ensued, in which I was made out to be the bad guy. To my children, I was being mean and upsetting mummy and [redacted]; to my wife and [redacted], I was being unreasonable and irrational.

The following day, my wife took the children out for ‘exercise’. When I asked to go with them, she became defensive and aggressive, so I dropped the matter because I didn’t want to argue in front of the kids. However, it was obvious she was really going to visit [redacted].

A couple of days after this, [redacted] demanded my wife and I stop having support sessions – the very support that is allowed under government guidelines and without which our family would fall apart. [Redacted] said it would be my fault if they caught coronavirus from my children – not their fault for breaking the lockdown rules!

I let it go until a few days later, when my eldest said she was seeing [redacted], but she wasn’t meant to tell me or they’ll all get in trouble. I had it out with my wife after that. I told her I knew she was visiting [redacted], and I wanted her to stop, but that as she was an adult, I couldn’t physically stop her. I asked her to stop lying, stop getting the kids to lie to me, and at the very least to stay two metres apart, which she agreed to do.

I then emailed [redacted] and told them the same – that I’d like them to support me and not come between me and my wife, but that if they were going to meet up, they were all adults and there was no need to sneak around and ask my kids to lie to me. It was, I thought, a reasonable request to make.

Their response was to call me a hypocrite who didn’t need support, and accused me of deliberately misinterpreting the guidelines.

I replied in a manner that was far more polite than I felt. I provided a link to the government guidelines that spelled out in black and white that I was following the rules. Regarding not needing support, I pointed out that I have autism and depression, while my wife has autism and a personality disorder, and I have spent four years protecting my family from Social Services, who have said that if I wasn’t around, they’d have grave concerns about my wife’s fitness as a mother. I said that this has taken a toll on my mental health, given my wife’s multiple behavioural explosions in front of support workers, including shouting, swearing, throwing things, storming off, slamming doors, making threats, raising her fists to hit me, and totally losing all connection with reality. I said that without support, my marriage wouldn’t survive.

Well. I don’t know why I expected understanding, because none was forthcoming. They tore me a new one. How dare I threaten them with Social Services, they said. How dare I label my wife (it was actually the psychiatrists who labelled her). And they said that if my wife shouted at me, swore at me, threw things at me, threatened me and raised her fists to strike me, they could understand why. That’s right, it’s my fault if she attacks me!

They said they’ll never forgive me for putting them through this ‘ordeal’, that I should be grateful to them, and that I’m a terrible father and husband who might be able to hide his true temperament from others, but they can see right through me. And they don’t want to speak to me ever again, so I didn’t even get the chance to defend myself.

I’m not entirely sure what ‘ordeal’ I’ve put them through. I asked my wife not to visit [redacted]; she ignored me. That’s it. Hardly an ordeal.

From that point on, my wife took the kids to see [redacted] every day, even though she knew I didn’t approve. When my kids told me they’d been hugging [redacted], my wife denied it and called them liars, before admitting that okay, yes they had, and she wasn’t going to stop him, so mind your own business. And when she told me she hadn’t seen [redacted], it turned out she had.

Our care manager came out to talk to her, and point out how awful it was to ask the children to lie to me. ‘What happens when the man down the street wants to play a game with them, but they can’t tell mummy or daddy or they’ll all get into trouble?’ she said. ‘You’ve trained your children that that’s normal.’ I reiterated that she’s an adult and can make her own decisions and doesn’t need to lie to me, so she agreed to be honest with me from then on.

Two days later, I caught her lying again and coercing the children into lying.

Given what my wife said in the meeting with our care manager, and from hints in [redacted]’s emails, I know they’re trying to set me up as some kind of monster. I caught her filming me in secret, trying to get evidence against me for God-knows-what, and [redacted] has told her to keep a secret diary in which to record all my misdeeds, whatever on earth these might be. I honestly don’t know what I’m supposed to be doing wrong.

I took legal advice from a specialist in family law, who told me that I’m in quite the predicament. You see, the house I live in is co-owned between my wife and [redacted]. If my wife owned it, if our relationship fell apart I would have the right to remain in the house until our divorce; because it’s co-owned, they can kick me out any time they want.

Worse, because of coronavirus, all the hotels, B&Bs and shelters are closed. With my wife being so unstable, if our relationship breaks down during the lockdown and the home situation becomes untenable, Social Services will have nowhere for me and the kids to go so would put the children into foster care until the end of the lockdown. If, on the other hand, it all became too much for me and I walked out and left the kids, I would be deemed to have abandoned them in an unsafe situation and would lose any right to them. Meanwhile, because of my wife’s instability, without me around Social Services would take the kids and put them into foster care permanently.

So, to recap – if I stay and the relationship becomes unworkable, my kids go into foster care; if I leave, the kids go into foster care. Therefore, the only way to keep my kids out of foster care is to stay and make the relationship work until the end of the lockdown, which is what I resolved to do.

A couple of days later, a police car pulled into the close and flashed its lights for a minute, the message being a clear STAY-AT-HOME. My wife waited ten minutes before heading to [redacted]’s again, but she was nervous about being stopped and asked what she should say if the police pulled her over, so she knows it’s wrong. I told her that if she’s decided to break the rules, she has to come up with her own excuses.

She didn’t get stopped, and as usual the kids came home with chocolate smeared all over their faces and didn’t want to eat the meal I cooked for them. I’ve told my wife before that I don’t approve of the way [redacted] buys their affection with chocolate (if he tells them off and they cry, he immediately gives them chocolate in case they stop liking him). I don’t think they should be eating Creme Eggs every day anyway, in addition to other chocolate, biscuits and sweets, and he knows this. So, what do you make of the fact that every day my wife doesn’t visit, an ice-cream tub full of chocolate appears on my garden wall?

It’s awful. I’ll finally manage to prevail upon my wife not to visit him for a day, I’ll take the girls on their scooters around the block, and every time I get back, a box of chocolate has been delivered in my absence. As soon as the girls see it, they scream in excitement, and if I tell them they can’t eat the chocolate, I’m the bad guy again. I’m trying not to be paranoid, but it comes across as a massive fuck you – it seems to say, ‘even when your wife doesn’t come to visit me, I can still get to your kids’.

I told my wife she was breaking my heart and betraying our marriage, and she decided to gaslight me in response. She told me I had it it all wrong, that she loved and respected me and was 100% committed to our marriage, and that’s why she hasn’t been visiting [redacted]. She said she goes to [redacted]’s house every day to exercise, and if he just happens to be there at his house when she visits, along with [redacted] who lives fifteen miles away, it’s coincidence. And if he chooses to cook them all a meal, or kiss them and cuddle them, there’s nothing she can do about that, is there? And the reason she lies to me and tells the kids to lie, is because she doesn’t want to upset me. But if I’d just look the other way it wouldn’t bother me so much. So really, I’m the one with the problem. And I’m not actually a very good husband and father anyway, and she only lies to me because I don’t trust her, and I should be grateful to her and [redacted] for taking the kids off my hands for a couple of hours a day. And anyway, she isn’t doing anything wrong and everyone knows I’m the crazy one and if anyone’s ruining our marriage, it’s me.

But that didn’t stop her from lying to me again last week. She said she’d only [redacted] through the car window leaving as my wife arrived, but my eldest said, ‘Mum, shush, remember what [redacted] said? We’re not supposed to tell him,’ to which my wife said to my four-year-old, ‘Shut up and stop lying, we didn’t see her, she’s lying! Liar!’

Later, my daughter told me they’d had a whale of a time with [redacted], who’d been chasing them with a hose, but [redacted] had told them not to tell daddy or they’d get in trouble because daddy’s very naughty. And she said, ‘But it’s okay, we didn’t have a cuddle with her.’

‘I did,’ said my two-year-old.

‘Well, okay, we both did,’ said my four-year-old, ‘but I’m not meant to tell you.’

No wonder they don’t like me. They’ve been told I’m being mean to [redacted] and they’re too young to understand any different.

Even worse is that the bedtime routine has been completely thrown out of whack, making my wife the hero and me the enemy. I put the kids to bed every night, and I’ve done that all their lives because after 7pm, my wife switches off as a parent. The handful of times she’s tried to put them to bed have been utter disasters that she’s abandoned halfway through because it’s hard and her job is to be the ‘fun’ parent.

Anyway, the past month my wife has been going up to bed at 8pm. What’s actually been happening is that, after I’ve put the kids to bed at 7pm, my wife’s been getting them up again and playing with them and telling them to keep quiet or daddy will come up and ruin their fun. Twice in the past two weeks, I’ve come up to bed to find my eldest camped on our bedroom floor because ‘mummy said I can sleep in here.’ Once she was in our bed itself, my wife fast asleep, so I sent her back to her own bed. This has turned me into the bad guy, and my daughter keeps asking me to sleep downstairs because she knows that if it’s just mummy upstairs, she can do whatever she wants. Consequently, discipline and respect have fallen apart.

Two weeks ago I put the kids to bed, waited fifteen minutes to make sure they were settled, then took the dog out for a walk. When I got back, my wife was in their room putting up a play tent and telling them they could sleep in it! I asked her what the hell she was doing, it was far too small, and said the kids had to sleep in their beds. It took me another 90 minutes to settle them again.

The next night she decided that from now on, she’s going to take over bedtimes. I told her this wasn’t a good idea because the girls see her as a playmate and not an authority figure, and now is not the time to disrupt their routine, but my wife had already told the kids she was doing it, and that was that. Again, I didn’t want to argue in front of the kids so I let it be.

After an hour of her screaming and shouting and the kids screaming and shouting, I went up to intervene and she closed the bedroom door in my face and wouldn’t let me in. I left it another half an hour before I’d decided that enough was enough. By this time, my eldest was crying uncontrollably while my youngest was screaming, hyperventilating and so agitated she was biting everything within reach. Walking into that room with my kids in such a state of distress, I was horrified.

I took them downstairs, and it was thirty minutes of holding my two-year-old tight to me before her breathing calmed down and she stopped sobbing. From there, it was another hour to get them to sleep.

I told my wife that from now on, she leaves bedtime alone. We can’t have this disruption. Once I’ve put the kids to bed, they stay in bed. They’re tired out and overstimulated. They’re being damaged and I need her support, because they’re the most important thing.

When the next day I told my support worker what had happened, she was equally horrified, and said she would have to report it, and in all likelihood it would be passed up the chain to Social Services. I figured the decision had been taken out of my hands. Whatever happened was no longer my responsibility – I had lost my kids.

This was a Friday, and I spent the whole weekend on tenterhooks, waiting for Children’s Services to come with a  van and take away my kids. I felt awful because since I’d clamped down on bedtime, things had improved. Worse, my wife was being nice to me, and I was racked with guilt over what this would do to her.

Nothing happened. Monday, nothing. Tuesday, nothing. Wednesday, I saw my support worker and she told me that her manager wouldn’t be passing it to Social Services because they’re my children and they’ll support me in keeping them, whatever it takes. It felt good to have that support.

Alas, it was the calm before the storm.

During my support session, my wife was home-schooling my eldest. Badly. Even though we were in a different room with the door closed, it was impossible not to hear the shouting and the crying. It was clear my wife wasn’t coping. So my support worker asked me why I wasn’t teaching my daughter.

I explained that from the start, my wife has elbowed me out of different aspects of the girls’ lives – birthdays, Christmas, days out, and in particular, schooling. When we were getting my daughter ready for school, I wanted to be involved but my wife kept pushing me out, going out to buy uniforms, pencil cases and suchlike with [redacted] instead of with me. She even wanted to take her to her first day at school by herself, without me.

I insisted I go too, but my wife conveniently ‘forgot’ to bring something vital and sent me home to get it. I asked her to wait and not go in without me, but of course, by the time I got back, she’d gone in, so I missed walking my daughter into her first day of school.

Anyway, my wife has always been incredibly territorial over our daughter’s homework, and I don’t get a look-in, and she’s the same with the home-schooling. So my support worker reminded me that she’s my daughter too, and if I want to be involved in her education, that’s my right as her father.

She had a point. My wife and I had been getting on for days, and that afternoon when she got back from visiting [redacted], we spent a very pleasant hour in the garden as a family. It was all fun and games so I thought it was a fair moment to broach the subject. I said I wanted to be more involved with the teaching, so could I have the login details for the school portal with all the lesson plans and resources she uses?

Everything changed. No, she said, no way. How dare I? Why did I have to ruin everything? No, I couldn’t have access to my daughter’s schooling – she would never give me access. She stormed inside and disappeared for thirty minutes, and when she reappeared, she looked at me like I was the dogshit she’d stepped in.

‘What have I done wrong?’ I asked, and she exploded with this whole rant about how I’d stolen bedtimes and bathtimes from her and there was no way she’d let me steal this. I said I didn’t think what I was asking was unreasonable; I wasn’t trying to steal anything, I just wanted to take a turn with the home-schooling. She replied with how I was selfish and nasty, and she stormed inside again.

But when the kids tried to follow, she told them to leave her alone, slammed the door in their faces and then locked us out in the garden! My kids burst into tears, I had to calm them down and it was five minutes of knocking before she let us in, while telling us she wouldn’t talk to any of us ever again, which again upset the kids.

I kept my head down and tried to keep the kids buoyant, but I was absolutely gutted, because things had been fine for a few days and suddenly it had all gone wrong.

Eventually, she started talking to the kids again. And then, with the kids sitting on her and glaring across at me, she said, ‘Oh, by the way, I’m putting the girls to bed tonight and there’s nothing you can do about it.’

I repeated what I’d said about routine and disruption, and I didn’t think it was a good idea, but she shot that down in a heartbeat, so again not wanting to argue in front of the kids, I went outside and wrote a long email to my care manager about the situation, before I had to hurry upstairs because my kids were screaming and crying again and bedtime was yet another disaster.

Later that night, I asked her why she was trying to push me out of my children’s lives – why she won’t let me have anything to do with education, why she’s just spent £200 on a children’s entertainer for my eldest’s fifth birthday without telling me, why she keeps arranging holidays and trips out with [redacted] and the kids but not me. She again told me she’d never let me steal this from her, and threatened to hit me if I said one more word on the matter.

Later that night, she texted me the login details, and the following day she told me not to change password and lock her out, like I’ve ‘done with everything else’. I knew immediately what she was talking about. The previous week, her account had been locked because she’d accidentally bought 17 lids for her inflatable hot tub (essential, I know), so she’d asked for my bank card so she could go shopping. When I pointed out we had plenty of food in the house and a menu plan covering the entire next week, she flipped out, so I thought it prudent to change the password on my Sainsbury’s (supermarket) account. Clearly I was right to do so, because she must have tried to get into it.

Anyway, I reassured her I wasn’t going to change the password and lock her out, nor did I want to take over or steal the home-schooling from her – I just wanted to be involved. And I asked her why she’d ever think it was okay to lock us out. ‘I was just joking,’ she said, like every abuser in history.

My care manager responded to my email and said she was very concerned about my wife’s increasingly unstable behaviour, particularly as it was damaging the kids and their relationship with me, and said that now was the time to bring in Social Services and get this resolved, and how did I feel about that?

I did a lot of soul-searching that day, but eventually I conceded that yes, the time had come. My children would be damaged by going into foster care, but they’re being damaged anyway. Things couldn’t go on as they were as it wasn’t healthy for any of us. It’s what’s in the best interests of the kids, after all.

This was a massive thing for me to do, because I knew it would spell the end of my marriage, but there needed to be resolution of some sort, whatever that was.

The next day, Adult Social Services rang and said I could have an extra couple hours of support each week. Not hugely helpful, but a start. But Children’s Services didn’t ring, so I waited for them to turn up and take my kids for a second weekend in a row.

Nothing.

Over the weekend, my wife has decided that [redacted] will now read the girls their bedtime story on a video call, despite me doing it for four years and it being one of the few fun things I have left to do with them. The girls told me they don’t want me putting them to bed anymore and want me to sleep downstairs from now on. As a father, that’s not pleasant to hear.

I spent the weekend doing everything an abused spouse does, like prevaricating, like making excuses for my partner’s behaviour, like wondering if I was the one in the wrong.

Finally yesterday (Monday) they rang. They told me they’d heard my wife had locked us out of the house and to tell them what was going on. So I did. I told them everything of the above. The lying, the undermining, visiting [redacted], poisoning my children against me, disrupting bedtime, shouting and swearing in front of them, all of it. Like I said – time for a resolution.

Well. Don’t believe what people say about Children’s Services wanting to take your kids away. They couldn’t care less. They said that if my wife decides to visit [redacted], so be it, it’s already done so there’s no point intervening. They said they can offer us some Early Years Support to teach us how to ‘cooperate better’ with each other, but not until after lockdown.

They asked to speak to my wife and said it wasn’t good to ask the children to lie to me, so she said ‘Okay, I’ll stop,’ and the person on the phone said that that was now all sorted, and if there was nothing else, thanks for calling.

I quickly asked her about the possibility of my eldest going back to school, just to get her away from the toxic atmosphere in the house, and she said she could perhaps ring the school and see if they’d take her for a couple of days, but she wouldn’t be able to do this until later in the week.

And that was that. To say I felt like somebody had ripped out my insides is an understatement. Children’s Services weren’t helpful, they were positively harmful. Why? Because they’ve essentially just told my wife that everything she’s done is perfectly acceptable and the only consequence of her actions is to maybe attend a voluntary parenting course. So of course, last night when they should’ve been in bed, she painted their toenails and let them camp on the floor, because there’s not a damn thing I can do about it.

So, in summary, apparently you can:

  • Shout and swear in front of your kids;
  • Slam the door in your children’s faces;
  • Lock your husband and kids outside;
  • Take your children to visit multiple family members almost every day of the pandemic despite it being against the government guidelines;
  • Undermine your husband with his children;
  • Tell the children to lie to him;
  • Call them liars when they tell him the truth;
  • Tell them daddy is the one being naughty;
  • Tell them that if they get caught, daddy will punish them;
  • Disrupt the bedtime routine in a way that makes the children frantic and distressed;
  • When he tries to intervene for his children’s safety, shut the door in his face and put your foot against it;
  • Refuse to give your partner access to your children’s lives;
  • Threaten him with violence when he asks to be more involved;
  • Manipulate him into missing his daughter’s first day of school:
  • Shut him out of any and all decision-making around your children;
  • Allow your parents more influence on your children than their own father;
  • Not support your husband when the kids no longer want him in the same room as them or even sleeping on the same floor;
  • Use your children as weapons in some sort of twisted power game against your partner;

And Social Services will do nothing about it.

My care manager was utterly shocked by their response. She feels I’ve been badly let down by the system. While you’re in the house, she said, those children are not deemed to be ‘at risk’, so Children’s Services will sit on their hands until you leave, and then they’ll be in like a shot. Instead of preventing a crisis, they’ll wait until it becomes a crisis before intervening.

No wonder Baby P fell through the cracks.

My children have been poisoned against me, and will go on being poisoned against me.

And apparently there’s not a damn thing I can do about it.

 

Home Support during lockdown

As a person with autism and depression, and a wife with both autism and Emotionally Unstable (Impulsive) Personality Disorder, I have home support. This means that twice a week, a support worker comes to my house for three hours to support me with my activities of daily living – making a menu plan, cleaning, washing, sorting the post, basic self-care, and all the things I don’t do when left to my own devices.

This help is essential, not just to keep me safe and hygienic and stop me getting into a mess with my finances and medication, it is my only means of ‘offloading’ my obsessive thoughts and preventing me descending into depression or worse. When you have autism, your thoughts often spiral out of control, particularly when you don’t have time to yourself, and left to their own devices, they can take you to a dark place indeed. Support workers help you put your thoughts safely to bed.

In my book, I explain my need for neurotypical support using a model I made up called the Mini and the Tractor. When those of us with autism are born, we’re given a Mini, while neurotypical people are given tractors. On the roads – those things we can do – we speed along quite happily, and are often able to overtake people in tractors. But either side of these roads are ploughed fields – the things we can’t do. While neurotypical people drive through them at the same speed, people with autism struggle, and bog down and get stuck, and often need a person with a tractor to come along and pull their Mini through the field and put them back on the road. We aren’t better or worse than neurotypical people, we simply have different wheels suited to a different surface.

So I need home support. Not only that, Social Services deem that I need six hours of support a week. I’ve thought carefully about this in light of coronavirus, and discussed it with my autism support service, and since caring for vulnerable people in their own homes is one of the government’s exceptions to the ‘stay at home’ rule, I don’t see anything wrong in continuing to have a carer.

My support worker engages with four other households. The way I see it, if our five households are doing what we should (i.e. staying at home and not interacting with family members), and she’s doing what she should (not seeing friends and family), then we’re a closed unit. If she gets coronavirus and passes it on to us, it will end with us – we certainly won’t be passing it on.

And this is why I believe it’s okay to have a support worker come round twice a week, but not okay to have friends or family round. My support worker is not a friend – she’s a key worker in the field of social care carrying out care in the community. She is here for work, not socialising.

Unfortunately, not everyone in my wife’s family sees it this way.

If I see my support worker, they think they should be allowed to visit too; and if I don’t allow them to visit, then I shouldn’t be allowing a support worker into my house either. That’s right, they think two people who are unable to live independently without support at the best of times should now live independently without support at the worst of them. All in the name of ‘fairness’.

There’s a line from the criminally-underrated What About Bob? where Bill Murray says something like, ‘Treat people like a telephone. If there’s a crossed connection, you just hang up and dial again.’

I used to believe that. Now I think perhaps there comes a time when you have to rip that telephone from the wall and throw it on the bonfire.

Asperger’s, parenting and social care

The provision of social care for adults at the more functional end of the autism spectrum has always been somewhat spotty. If you’re at the lower end – with classic or Kanner’s autism – there’s plenty of help and support, but those of us with Asperger’s Syndrome face a lottery.

You see, as far as care services are concerned, AS falls between the Mental Health Team and the Learning Disabilities Team. It is not a mental health disorder, but then nor is it really a learning disability – it’s a developmental disorder. Nevertheless, autism tends to be within the Learning Disabilities Team’s remit – but they only get funding to deal with the lower end of the spectrum. In terms of care, then, if you have Asperger’s Syndrome there’s nothing the care services can provide.

You are, however, assigned a social worker – well, sometimes. But herein lies another problem. The team to which you are first assigned is the team you’re stuck with. I was first assigned to the Mental Health Team long before I was diagnosed with Asperger’s; as soon as I was diagnosed, I was discharged by the psychologists, psychiatrists and counsellors, but kept the social worker from the team. And as I said before, Asperger’s isn’t a mental health problem and most social workers I’ve met are gobsmacked when they meet me to find I’m not Rain Man. Different end of the spectrum, guys. Thanks for joining us.

The job of the social worker is to give the service user (i.e. me) access to services pertaining to their condition. Since, as I said, there are no services for adults with Asperger’s, this access takes the form of money that can be used to buy support from private care agencies. I was deemed to require six hours of support each week, so they decided to fund me for three, and I pay for the other three. Thus three times a week, for two hours at a time, I have support workers come in to make sure I’m carrying out my activities of daily living – changing my clothes, cooking, cleaning, etc., and to help me with paperwork, budgeting and the various minutiae of modern life I’m thoroughly incapable of coping with.

This is the way it has been for around seven years now. However, things have changed lately because of the arrival of my little bundle of giggles and poop, otherwise known as Izzie. As regular followers of my blog will know, my partner Lizzie (yes, I know it rhymes and in hindsight it’s quite confusing) has struggled with the demands of motherhood. Like me, she has six hours of support each week, and also has a social worker from Mental Health. Since things were so tough over the first six months, we asked for additional hours just to help us out until we managed to find our feet again. Here is the response we received, paraphrased and dramatized:

‘We’re adult mental health social workers. Neither of you has a mental illness. We’re not even sure why we’ve been assigned to you. Unfortunately, you fall down the cracks between Mental Health and Learning Disabilities.’

But it’s not our fault what we have doesn’t fit into your organisational structure. What we’re asking for is additional funding for more hours for assistance. Because at the rate we’re going, we’ll end up with mental health issues.

‘Well, here’s the problem. We don’t deal with children – we only deal with adults.’

But we are adults. Adults who are asking for help.

‘The thing is, before the baby arrived you were both stable on six hours a week. The disruption in your lives has been caused by the baby. Therefore, if you need extra help because of the baby, the baby will have to fund it.’

I’m not sure I understand.

‘Being a parent is not a mental health problem. If you want any assistance, Izzie will have to get a social worker, and be assigned funding from Child Services.’

I see. So will you refer us?

‘I can give you their number…’

To cut a long story short, we applied to get a social worker for Izzie, to get us extra help as her parents, but as she’s at no risk of abuse or neglect, we were turned down. So, no help there.

Another avenue explored was the Perinatal Mental Health Team. Lizzie was assessed by them, and they concluded her difficulties were caused by her autism, not by postpartum depression, and since autism isn’t a mental health problem, they can’t provide any assistance. So if her autism is causing the problem, who can we go to for help with that? Apparently, nobody.

You can now perhaps understand something of our quandary. We have autism, and despite the joys of the past six months, it’s been a real struggle. We are not the same as every other parent, even though I like to pretend we are, but we’re too high-functioning to get any help from public services, too attentive to Izzie’s needs to get access to child services, and not suffering enough mentally to get extra funding.

To add insult to injury, we have just been summarily dropped by the one piece of free support we were receiving. Since I work Tuesday afternoons in a charity shop, and Lizzie struggles to cope at home on her own with the baby, we had an outreach worker from the local children’s centre who would come out and sit with them for an hour. It was useful and we were grateful for it.

We didn’t hear from the outreach worker after the festive period until she texted on Monday 11th asking to come out either Wednesday afternoon, Thursday morning or Friday morning. Since Wednesday afternoon Lizzie was out with her mother, Thursday morning she takes Izzie to baby group (which is beneficial for mother and baby both), and Friday morning we have swimming classes (which cost £110 a term), we said we were busy. Besides, wasn’t the whole purpose of her visits to sit with Lizzie on Tuesday afternoons?

So she texted us again Tuesday just gone to tell us that they are closing our case because we have ‘disengaged from the process’ and failed to make ourselves available and haven’t kept in touch and if we ever want any help from the children’s centre again we will have to get Izzie a social worker and be referred.

This has left us both feeling perplexed and upset, principally because we have no idea which ‘process’ we are supposed to have disengaged from, but also because we don’t understand why we should have cancelled a Thursday morning Mother and Baby group or Friday morning swimming lesson when the whole reason she was coming was to sit with Lizzie for an hour on Tuesday afternoons? Furthermore, the wonderful invention called the telephone could have resolved whatever issues they had with us – what’s all this text message crap?

They clearly have no idea about autism. We like routines and we cannot abide change, so we make plans and stick to them – disruptions to our timetable make us agitated, anxious and insecure. When plans change you feel small and scared, but you can’t rationalise it away because there’s nothing you’re actually afraid of. It’s simply a general, all-pervading fear that all is not right with the world, a feeling of danger and fright when there’s nothing coming for us – just shadows in the dark. That’s why we don’t change plans at the drop of a hat. If people understood that, it might make things easier.

It reminds me of the time before my breakdown, before my diagnosis, when I was climbing the walls and my thoughts were tearing me apart. I was referred to a psychiatrist under the mental health team. But I wasn’t opening the post – I hadn’t for six months –  so when they sent out the appointment by letter, I didn’t open it and I therefore missed it. So they discharged me with the stipulation that if I was referred again I would go to the back of the queue. I only discovered this months after my breakdown when I finally had the energy to face up to opening the huge box of post my parents had kindly collected from my flat. How different things might have been if someone had actually picked up a phone. And how switched-off to the realities of mental health do you have to be to send someone an appointment by post when it said in the referral that he doesn’t open it?

I honestly think that, going forward, we’ll be better off as a family without the interventions of any of these social workers, care providers or so-called experts. The other day, when Lizzie was feeding Izzie during a support session, Izzie choked. We’ve just started her on food with a coarser texture, and choking is par for the course during weaning. The support worker even said that it was entirely innocent, normal, there wasn’t too much on the spoon or too much in her mouth, it was just one of those things. But she still felt the need to report it to her manager, and have it logged that on this day, at this time, during weaning our baby choked. Everybody is just looking for you to fail, and covering their arses in case you do, and that’s not an environment in which I want to raise my child.

Ending on a positive note, the past couple of weeks Lizzie has been so much better, it’s like she’s a different person. She’s far more attentive to Izzie’s needs, supports me more than she ever has, and is suddenly settling into the role of motherhood. And I have finally made peace with the fact that bedtimes and overnight is my domain, because Lizzie will never be capable of getting up in the night. We have different roles to play and given how Izzie is far ahead of the curve in almost every respect, we’re playing them damn well!

It’s just a shame it’s been such a struggle to get here.

Support for Parents With Autism

This is a long one, so brace yourselves.

There’s plenty of support for parents with autism. There’s also a total lack of support for parents with autism. Weirdly contradictory, I know, but read on and I’ll explain.

While Lizzie was pregnant with Izzie, we received plenty of support on account of our autism. They gave us a consultant at the hospital, sent us to a nutritionist, referred us to the ‘special’ community midwives and introduced us to our future health visitors. We also had an outreach worker from a local children’s charity who visited us every few weeks to make sure we didn’t need anything extra and were up to speed on the processes of labour, birth, and what comes next. Pretty nifty.

The ‘special’ midwives visited us every few weeks in the safety of our own home, and gave us extra time to explain things and iron out any problems. The team was so good that when Lizzie was sent home from hospital because they didn’t believe she was in labour, three community midwives turned up when the emergency shout went out, and two of them accompanied Lizzie in the ambulance.

We had meetings involving social workers, the local autism charity and representatives of the local council to offer their help and support, too. The unborn baby was assigned a social worker and our competence was assessed (and found to be fine). We were given a fake baby to look after for a few days and attended both NHS and NCT courses on pregnancy, childbirth and breastfeeding. The midwife team could support us for 28 days after birth; the health visitors could start from 11; and they’d see us every single day if they had to. Promises were made, support was offered, and our hands were going to be held right through the pregnancy and birth and into the future.

But it hasn’t worked out like that.

The main problem we had before the birth was getting Lizzie ready for her two nights in hospital. As a medically high-risk individual, she and the baby had to remain under observation for 48-hours. Trouble is, they wouldn’t allow anyone to stay with her overnight – visiting hours ended at 8pm and partners had to be gone by midnight, not to return before 10am – and as a highly anxious person with autism, a fear of hospitals and difficulties adjusting to new situations, Lizzie was terrified of being alone, particularly with a new baby.

Various people contacted the maternity unit on our behalf, and we were even given a tour of the birthing suite, postnatal ward, Special Care Unit, Neonatal Intensive Care Unit (NICU), and Transitional Care Unit (TCU) – all of which we unfortunately got to use – but they wouldn’t budge an inch: despite Lizzie not spending a night by herself for years, having six hours of support from the autism charity each week and a hell of a lot more from family, friends, and me, and struggling to communicate when stressed or with strangers, both of which she was going to be, they would not make any exceptions for anyone. The best we got was that the hospital would try to give her a side room on the postnatal ward, or a place in the eight-bed TCU, depending on space and circumstance. So she’d just have to grin and bear it.

As I have mentioned before, the labour and birth were a bit of an ordeal. Lizzie lost almost three litres of blood, the baby spent the first two days in an incubator on NICU and the next two in the special care unit, and then another three on TCU. I would like to say that the midwives and nurses and healthcare assistants were great, and they were, but one deep problem overshadowed that whole week: where was our special dispensation for being autistic?

‘Ah,’ I hear you say. ‘Why should you get extra attention for having autism? Never happened in my day. The midwives and nurses should have been able to support perfectly well.’

And yes, they should. But there are a couple of problems with that.

Staffing is the first issue. They don’t have the time to provide the extra support a person with autism needs. On the Postnatal Ward one night there was one midwife to cover 25 beds – so presuming one baby per child, that’s one person to care for fifty people. And Lizzie was in a side room. Did the midwife have the time to check on Lizzie, explain things to a greater depth, make sure Lizzie understood, and, more importantly, that she had understood Izzie? Of course she didn’t.

Things weren’t any better on TCU. You’d think that with eight beds supported by one midwife and one healthcare assistant, you’d be seen when there was a problem. But one night, it was ten o’clock, the staff had changed over at seven, we hadn’t seen anyone for four hours and my taxi (also named ‘Dad’) was due at eleven. We were worried about Izzie as she was jaundiced and not going to the toilet, and I was worried about Lizzie, who was freaking out, and I’d buzzed three times already, so I went to find someone. It turned out the two staff were feeding two sets of twins, and they told me to wait my turn. Hardly supportive of two desperate and terrified new parents, particularly if they both have autism.

Another issue is therefore understanding. I don’t know if they’ve had training in autism and Asperger’s – they should have done as a result of the Autism Act – but I had to explain to every one of them what it was and how it affected people. They all said the same thing – ‘Oh, if she needs anything, all she has to do is ring the buzzer.’ Even without a three hour wait, the simple fact is that Lizzie isn’t capable of asking for help. She shuts down when there’s a problem, goes into herself and stops communicating. And she pretends she understands things, or thinks she understands them, when she doesn’t. I watched midwives ask if she was okay and she smiled and they walked off when I knew there was actually something wrong. And I watched as people explained things to her and she nodded intelligently and then afterwards said to me, ‘What did any of that mean?’ This is why she needed someone who knew her to advocate for her, to talk to people on her behalf as the support workers and social workers had been doing. But they still wouldn’t let me stay.

Now, imagine you’re a twenty-nine year girl – perhaps not the easiest of things. Imagine you hate hospitals and have had to have counselling from various sources to face up to the fact that you have to spend two nights away from home. You’ll be away from your partner and your regular support network, and in addition, you’ll have the responsibility of a newborn baby that you have to look after alone, without your partner backing you up.

Now imagine that you have the baby, only it’s a terrifying nineteen hour ordeal involving ambulances, blood, screaming and pain, a spinal injection, episiotomy, failed ventouse and forceps delivery. Imagine you then haemorrhage and have to have two blood transfusions, while the baby is rushed off to Intensive Care in an incubator. Imagine that instead of the two days you’ve prepared for, you have no idea how long you’ll have to stay. Imagine that they put you in a side room and ignore you for eight hours at a time while you plod back and forth to NICU, where your baby is being fed through a tube in her nose.

Now imagine you get transferred to TCU after four days, and are handed your baby and expected to get on with it. They’re too busy to sit with you and show you how to breastfeed, so they give you advice and leave. Now that the baby’s not being fed through the nose, she’s desperately hungry, and won’t stop screaming and sucking on your breast even though there’s nothing in them.

Imagine she’s been feeding for five hours, and you’re weak, and sore, and tired, and you haven’t recovered from the blood loss, and you’re in a strange place with strange people and nobody is responding when you buzz. And then they tell your partner, the one who has been standing beside you all day, supporting you, giving you strength, that he has to leave and come back almost eleven hours later.

Now imagine that you have autism.

I think that warrants a little special dispensation.

People with autism don’t like change, and with a different midwife or nurse every few hours, and no consistency from one day to the next, hospitals aren’t designed to be easy for us. With the additional problems with communication, understanding and anxiety, people with Asperger’s Syndrome and other forms of autism really need someone to advocate for them in hospitals. Ideally, a family member or partner should be allowed to stay with them to act as go-between. Hell, I’d have slept in a chair – I even asked to – if it meant I could stay and support Lizzie. It would free up nurses and midwives, provide far better care for new mothers, and be less cruel on people who have just been through a traumatic experience.

But they don’t make exceptions for anyone, apparently.

Once we were eventually out of hospital, we had great support from the midwives and health visitors. Until, unfortunately, a few weeks ago it was decided that as our village sits on the border between Hampshire and Dorset, all the people formerly looked after by Dorset health visitors (like us) must be transferred over to Hampshire health visitors. So the Dorset health visitors have washed their hands of us, but Hampshire haven’t picked us up yet. After seeing the health visitor every week since the birth, we’ve not been seen now for a month. I spoke to Hampshire and they said they’d be happy to see us, two towns over, in a year. So I rang Dorset to say that doesn’t sound right and they told me to speak to Hampshire. Again, for people who don’t respond well to change, to have support and then take it away seems like calculated cruelty.

So all in all, there are great support services out there for expectant parents with autism, and some great support services for parents with autism, but don’t expect to get much support inside hospital, because it all ends at the door. Equally, the provision of services in the community is terribly inconsistent and seems to be dependent on postcode and not need. I guess it’s lucky we’re doing so well, and nowadays don’t really need that much support, but for people further down the autism spectrum, I dread to think what could happen.

The Autistic Elephant in the Room

When you look at your baby it’s impossible not to wonder about inheritance. My daughter has her mother’s eyes, ears, nose, lips, hair and fingers. The only thing she seems to have inherited from the Drew family’s genetic legacy is the bum chin that I don’t even have. And despite being less than a month old, she still has more hair than me.

Luckily, her behaviour is more equally shared between us: she slurps her milk like her daddy, spills it down herself like her mummy, and is as noisy and uncoordinated as the both of us. I imagine the incontinence must come from elsewhere.

When you have autism, and so does your partner, the question of what your children might inherit from you takes on additional weight. While Lizzie and I were trying for a baby we were often asked if we were worried our child might be autistic. Whilst there’s no convincing evidence that autism runs in families – around one in twenty people with autism have siblings on the spectrum – anecdotally, many of us with Asperger’s can see autistic traits in at least one of our parents. So what if we create an autistic child?

As an individual, autism infuses the whole of my being. It is who I am, and my ways of thinking and feeling are inseparable from my condition. The same is true of Lizzie. I love her in spite of her autism, and because of it. We would not have achieved the things we have, in the ways we have, if we did not have Asperger’s Syndrome.

So would I want Izzie to be autistic? That’s an impossible question to answer. If I say no, it does a disservice to all the people I know with autism who would not be who they are without it. If I say yes, I am setting her up for a lifelong struggle in addition to the regular trials and tribulations that come with being human. In truth, whether she has it or not, it doesn’t matter at all. Aspergic or neurotypical, she will be uniquely herself and I will love her just the same and be there to support her regardless.

And yet I keep watching her for signs. You can’t tell below six months, apparently, but I thought the other day, ‘She makes good eye contact, she can’t be autistic.’ We gave her a bath for the first time last week. She sat in silence until we wet her head when she absolutely screamed the house down; I cannot abide anybody touching my head. But she loved her second bath. It’s just too early to tell.

I think it’s only natural for parents to want to wrap their children in cotton wool. Knowing the life I have led, spending a quarter of a century bouncing from misdiagnosis to misdiagnosis, doped up to the eyeballs on various mood stabilising and antidepressant medications, and suffering several breakdowns to boot, my family didn’t want me to have children. There was too much risk the child would be autistic. How would I cope? What if Social Services took her away? What if, what if, what if?

Deep down, I probably don’t want Izzie to have autism: I know firsthand just how hard it can be. But as I said to my parents, by protecting me from the bad things in life they’re also protecting me from the good. If I didn’t have a child, my life would be easier, but emptier; avoiding the risk of things going wrong means you avoid every opportunity to better your situation. And I wouldn’t change having Izzie for the world.

I have to remember this going forward. As a parent, I’d rather Izzie had an easier life and thus didn’t have autism. But perhaps autism would open up opportunities for her that she’d never have without it. It is not for me to say who she ought to become. I just have to make sure that, whatever issues Izzie might face in her life, she knows that her dad is behind her all the way.

Baby Steps

When I was travelling through the wilderness of New Zealand I developed a simple mantra: step, step, step. Soaked to the skin in never-ending rain, tramping uphill towards a mountain pass that didn’t get any closer, with nothing but a cold cabin & faulty gas burner waiting for me, it was too much to think of the end goal. Or the middle goal. Or even the next hundred yards. I could only focus on lifting my foot, moving it forward, placing it down, step, step, step.

Raising a baby is all about the steps. My partner Lizzie thinks it’s about getting through the day, but to me that’s far too long term. Don’t think of reaching bedtime, don’t think of the next three hours. Live in the moment.

As I write this, Izzie is cuddled in my arms with hiccups, looking at me in a confused, mesmerising fashion. When the hiccups finish, will I need to change a nappy, feed her, burp her, settle her to sleep? It doesn’t matter. Right now I’m holding her as she hiccups and that’s good enough.

When the authorities learned that two people with AS were expecting, they assigned the unborn baby a social worker and set about testing our capability to raise a child. How would we meet its social and emotional needs? What would we do if it was eight years old and being bullied, or twelve and struggling to make friends? What sort of things did we witness as children (a particularly leading question, I thought: I witnessed some truly awful McDonald’s adverts, but I’m not sure that counts)?

My answer was that no prospective parent can possibly know what they’ll do so far in the future. We were learning about breastfeeding, nappies, burping, not studying dating advice for teenagers. Like any parent we’ll sort out the baby thing first, then the toddler thing when it arrives, then each stage in turn. And when the baby is being bullied at eight, we’ll have eight years of parenting experience, and be better capable of answering that question than if I made something up now.

They ultimately discharged us, with a view to checking in every so often to make sure we’re hitting the social and emotional milestones, whatever those are. Sometimes I think we know too much, and put undue pressure on parents and children, Aspie or otherwise, to fit into a model of what is deemed ‘normal’. But right now, I’m just thinking of step, step, step.

(And the next step was a nappy change, in case you were wondering!)