abuse, autism, parenting

What we did during Lockdown: vomit, ambulances and the CMS.

I’m on my hands and knees picking up broken glass and chunks of vomit from Lily’s carpet, while she yells at me to get out of her room. Seconds later she’s clutching her head, screaming in pain, demanding I cure her post-seizure headache immediately. Less than five minutes ago she was fitting, smashing a lamp as she fell to the floor, showering slivers of broken glass from the huge decorative (and expensive) lightbulb. There is a real danger of her choking to death on the partially-chewed food in her mouth, so myself and Ivy struggle to roll her into the recovery position as soon as we can, while a semi-conscious Lily fights us off. Despite being urged to stay calm and lie still, she suddenly springs up, banging her head on her desk in the process. Next minute she climbs up the ladder to her loft bed, while Ivy and I try to get through to her that there is broken glass everywhere so please just stay still.

I deal with the chaos, picking up all the mess from Lily’s bedroom floor, shaking out clothes from the window to make sure there’s no glass in them before putting them in the wash, heading downstairs to empty the dustpan. Lily appears in the kitchen, despite having been told to stay in bed, then suddenly swears loudly and yells for a bowl, which I manage to grab and hand over before she starts vomiting again. Ivy, who’s been helping brilliantly until this point, turns grey and runs upstairs to the bathroom, crying and retching, the sight of a vomiting sibling proving too much for her OCD.

Having made sure they’re both okay, and dealt with a second major vomiting incident from Lily after that, I’m on hold to NHS 111 on the landline while simultaneously trying to reach my GP on the mobile. I need advice about whether Lily’s vomiting and severe headache are post-seizure symptoms or signs of concussion, given that she whacked her head on her guitar amp; an ambulance ends up being sent to assess her. Of course, Lily initially refuses to be seen until I manage to explain that if she had concussion she might end up with brain damage. I have to then persuade the 111 operator that the paramedics would be able to safely assess her and not be turned away at the door. Lily then refuses to let the paramedics take her to hospital for observation, so observation becomes my job too. She blames Coronavirus for her refusal, but I know from past experience that she would have refused to go anyway.

This is the third seizure in 6 months due to Lily not taking her medication. ADHD-related executive dysfunction means that she basically can’t be bothered, even though I’ve put the tablets and a glass in her room. Or she forgets. Or… I don’t even know, because when I ask her if she’s taken her meds she always tells me she has. If you think that I can stand over my 17 year old twice daily and force her to take her meds, you clearly haven’t heard about Pathological Demand Avoidance. She’s now agreed to take them at breakfast and dinner in the kitchen, although I’m still reminding her twice a day, along with nagging her about her screen time, her caffeine intake, the amount of sleep she’s getting. I also have to check how much medication she has left, otherwise she’d run out and not let me know – it’s taking over a week to get a repeat prescription at the moment, and there’s only so many times you can explain to the GP and pharmacist that it’s an emergency before it gets hideously embarrassing. I have to keep track of when Lily has a shower, and remind her that she needs to wash more frequently than once every three weeks. Even with chunks of vom in her hair, it’s the next day before I can persuade her that she really does need to shower now.

Today Lily swore at Ivy with a word I found completely unacceptable, then argued with me over and over, becoming more and more rude and defiant and aggressive by the minute, not listening, talking over me, refusing to take no for an answer. No matter how many warnings she’s given, no matter how many times she’s told she needs to stop now and go to her room – or just leave me alone – she carries on until I explode and yell at her. And no, I shouldn’t yell – but I defy you to let a mosquito jump up and down on your arm repeatedly biting you without wanting to swat it at some point, which is the closest analogy I can think of.

Shortly afterwards the response I’ve been waiting for from the Child Maintenance Service arrives. It’s a short, badly worded letter, that basically only re-states their position that they are unable to revise their decision and I need to appeal to a tribunal. I fire off a curt response, including copies of the letters they’ve previously sent me with the relevant points highlighted. Look. You told me that my ex would have to go to tribunal to appeal the decision you made in my favour. Then you revised that decision without warning, based on false and misleading evidence he submitted. Now that I’m trying to appeal you’re telling me you’re not allowed to revise a decision, I have to go to tribunal. But you’ve already revised your decision on appeal! Kindly pick a policy and stick to it! I word it slightly more professionally than this and miraculously manage to refrain from swearing at them. I point out that I have full time care of both children, that both children are legally classed as remaining in full time education, and that Child Benefit continues to be paid for both children despite Simon’s attempts to sabotage it, so please explain why you’re opting to breach your own criteria for payment.

I have fought 7 battles over child maintenance in a little over 8 months. I’m exhausted, angry, demoralised. I’ve wasted hours and hours of my time writing letters, waiting to speak to an advisor at CMS on the phone – always at least 25 minutes on hold, registering and deregistering for their stupid online system, appealing to Child Benefits to undo the damage that Simon has maliciously caused, queuing outside the Post Office, or finding myself too angry and fretful to do anything useful. I’m getting half of what I should be paid, with further deductions taken off to pay Simon back for an “overpayment” that technically shouldn’t exist. What makes it worse is knowing that as I square up to fight this battle, there’ll be another one waiting around the corner, and another, and another, because the CMS refuse to take any action against Simon, even when it’s been proved that he’s lying to them. If I win the tribunal, he’ll find something else to appeal against, because nobody is stopping him. My biggest worry is that now he thinks he’s won by not having to pay for Lily, he’ll start looking for ways he can get out of paying for Ivy too. Well hello there, poverty.

I still don’t understand how there can be any loophole that allows a parent to throw their child out and then refuse to pay maintenance for them. I don’t understand how an EHCP isn’t automatic when your child has a diagnosis (or three!) of a recognised disability. I think Child Benefit should continue to be paid until 18 for autistic/ADHD teenagers whether or not they’re in full time education, given the difficulties of finding suitable post-16 provision and of getting adequate support – it’s simply not fair to classify them in the same way as a neurotypical teen who doesn’t share their difficulties. Similarly I think child maintenance should be paid for a disabled child for as long as that child remains in your care, given the economic impact of being a full time carer. Having children continues to negatively impact a woman’s ability to earn – more so if any time is spent as a full time Mum, even more so if the child has a disability. But to change any of this would mean having to campaign to change the law – change several laws – and I’m too bloody tired to think about it. And so we continue on, all separately fighting similar battles; single mothers being screwed over by ex-partners, parents of autistic kids battling to get their educational needs met, politicians not seeming to care how hard it’s making our lives.

So this is what I’ve been doing during Lockdown, rather than joining in with Joe Wicks, baking cupcakes or writing a book. As I’m sluicing bowls of vomit down the toilet, picking up chunks of it from Lily’s carpet, trying to make sure no one slices themselves open on smashed light bulbs, waiting on hold to the NHS and wondering whether it’s safe to have a paramedic in our home during the pandemic, or trying to explain for the umpteenth time that it’s really not okay to call your sister that and no, I don’t want an argument about it, and coping with the realisation that Lily could well have died if I hadn’t been there, I’m very very aware that Simon isn’t doing any of this. So why should I be punished financially for being the one who does?

autism, parenting

How to reassure your autistic or anxious child about Coronavirus

If Ivy is worried about something she’ll either tell me about it or become anxious and withdrawn to the point where I’ll ask her what is wrong. Lily however will continue on in her rambunctious way, never admitting anything is wrong but becoming angrier, more defiant, more irritable and generally biting my head off – as if someone has cranked the level up to 11. Although as a family we don’t tend to watch the TV news, it’s hard to avoid all the headlines about Covid19 – and the rows of empty shelves as we did our weekly shop were a glaring reminder of the situation. In the car on the way home Lily quietly asked me if we were all going to die, and insisted that I tell her the truth, not just try to make her feel better about it.

It’s hard enough for adults to trawl through the innumerable sources of information out there and decide what’s truth and what is clickbaiting hysteria, but for children and teenagers it’s almost impossible. Faced with ever-rising figures about the numbers infected and the death toll, everyone is worried and uncertain – for anyone suffering with anxiety (and autism is an anxiety-related disorder) the consequences are unbearable. Our children have simply never experienced anything like this, and to be honest even as an adult who has lived through the swine and bird flu phenomena, I’ve never experienced anything like this either. No one knows what is going to happen nor what the long-term consequences will be. Personally I’m hoping that as our governments must surely be forced to work together, this sudden realisation that we are one global community might be harnessed in order to combat the crisis. Who knows?

In the meantime, it’s left to us as parents to reassure our children – many of whom are already suffering from OCD and heightened anxiety. What on earth can we say when we don’t know the answers, and when they’re witnessing empty shops, travel bans and talk of quarantine and school closures (at the time of writing schools in the UK are still open, but this may inevitably change?)

Please note – these are merely suggestions, and are aimed purely at providing reassurance rather than official medical advice; following these will not reduce the chances of you or your children catching Covid19. This is aimed only at reducing mental/emotional distress in the meantime. Also – the situation is constantly developing, so forgive me if my take on things becomes rapidly out of date!

  • Reassure them that not everyone will catch the virus, and of those who do catch it the vast majority will be ill for a short while with flu but won’t die. Some people will have symptoms that are so mild they don’t know they’ve got it. Serious cases and deaths have been with people who have pre-existing medical problems. Young, healthy people are not at high risk of developing complications or dying – it’s important that your child realises this, otherwise they might believe that they and everyone they love will die.
  • With older kids explain that it’s a form of flu, that there are deaths every year anyway from flu (which is why the flu jab is available) and as it’s a new form of the illness nobody has immunity to it, which is why it’s become such a problem. The main issue isn’t that everyone is going to die, it’s that it will be difficult to keep things running normally if too many people get sick at the same time. While we obviously want to prevent sickness and death, a lot of the measures being put in place are about trying to slow the virus down.
  • Explain what steps you’re taking to keep everybody safe, eg. handwashing, sanitisers, reducing social contact etc. If you have loved ones who are more at risk, explain what extra steps they are taking.
  • If someone in your household has a compromised immune system, print or create a notice to post in your front window asking deliveries etc to be left in the porch – these are available online.
  • Children may feel more secure if they are able to write House Rules to pin up near your front door or window, eg Please wash hands as soon as you return home.
  • Explain what will happen if any of you get ill and draw up a Plan of Action to reassure them. It’s a good idea to plan for this anyway! Who will look after the ill person, what meals have you got readily available, where can you get food deliveries etc? What extra steps can you take to try and prevent others in the house from also falling ill if possible? What happens if both (or single) parents get ill at the same time? You will likely find that your child has specific worries that they want you to address, for example they might be worried that they don’t know how to call 999, or they don’t know Grandma’s phone number if you get sick.
  • If you have stocked up on food, loo rolls etc, let your anxious child see the stash in order to alleviate their fears. They might feel less anxious if given more agency, so have them create an inventory of what you’ve got in stock.
  • If you haven’t got hand sanitiser, try putting together a home-made version with essential oils (search for recipe suggestions online) – this is unlikely to provide realistic protection (although several essential oils can have anti-bacterial or sanitising properties), but again it’s about providing reassurance to your child.
  • Focus on positive and practical news stories and share these with your child. eg. Local volunteer groups springing up to help fetch supplies for vulnerable people, or that firms such as Rolls Royce can be used to manufacture extra medical equipment such as ventilators. As Mr Rogers said, always look for the helpers.
  • DO NOT WATCH THE NEWS WITH YOUR CHILDREN PRESENT. Similarly, do not have conversations about it when they are in earshot.
  • Although most kids might be thrilled at the thought of school closing, anxious children might be worried about falling behind, particularly if they are approaching important exams, secondary transition etc. Show them what measures schools are taking, that GCSE’s are likely to be moved back to September in the UK, how lessons might be set online, websites such as Khan Academy, BBC Bitesize, MyMaths etc, and reassure them that you will help them to manage their education if school is shut. You could help them look at how children get an education in remote areas such as the Australian Outback, or investigate forms of home education – not going to school has always been a reality for some children and so there’s no need to panic.
  • Friendships are also important so discuss ways that they can stay in touch with their friends if you or they need to self isolate, or if school is closed – this is perhaps more of an issue for younger kids who might not have mobile phones/social media.
  • Older children might appreciate relevant updates, particularly if it shows that new measures are being taken to control this. Keep these practical and positive – either tell them about it personally or show them an internet article/video, as long as the content is positive. Avoid just handing over your phone/tablet etc, share it with them and then put it away so that they don’t start clicking on negative links.
  • Focus on the science; there are good scientific reasons behind handwashing for example (the soap can kill the virus by destroying part of its coating, for a very oversimplified explanation!) Address specific worries by investigating the reality, so if your child is worried that the shops will run out of food you could look at how supply chains work, or how rationing would work – how do governments make sure people get fed after a natural disaster, for example?
  • Try to provide distraction, eg watching a funny movie together, or silly YouTube videos. Life goes on.
  • Make a list of ways you will have fun and keep yourselves amused if a quarantine or self-isolation is imposed. Let your child have as much input as possible, coming up with fun suggestions, or perhaps they could make a list of all the board games or movies you own. Even making a list of their own toys, books and games might distract them.
  • Prepare a Self-Isolation/Quarantine box (do this quickly before further restrictions are put in place!) – allow everyone to choose a new magazine or book, a small treat etc. This all goes into a box that’s put away and only brought out if you have to self-isolate, or if you get sick, or when the whole shebang is over and done with. This way your child has something to look forward to and it can stop them dreading what might happen!
  • Self isolation doesn’t mean you can’t leave the house (although quarantine restrictions can vary so check if this is the case) – it means avoiding public transport, going to work, social gatherings etc. You are still allowed to go for walks, or ride your bikes! Fresh air and exercise tend to do everyone some good, and you are not putting yourself or others at risk if you’re rambling through the woods and fields. Reassure your child that they will still be able to leave the house and go outside, walk the dog – but they wouldn’t be allowed to visit friends or go to a cafe, library etc.
  • I followed these instructions to sew a face mask for one of Lily’s cosplay outfits. It is unlikely to reduce her risk of infection, but she’s happily wearing it when she goes out, particularly as she has to use public transport to get to college.
  • Allowing your anxious child to wear disposable gloves might reassure them (these may be available at DIY stores if pharmacists, supermarkets etc have sold out) – I’m increasingly seeing receptionists etc wearing them. If they’re young enough, any kind of glove might help to soothe them, although be prepared for an insistence that they get washed every time.
  • Ask older children what measures they think need to be taken, whether for you as a family, or what they’d do if they were in government – this can help them to start thinking practically and give them a sense of control, rather than panicking.

Generally there’s a need to provide anxious children with a sense of control over a situation that is way beyond anyone’s ability to control it. Younger children can be more easily reassured with the equivalent of Dumbo’s Magic Feather – a squirt of hand sanitiser or a face mask. Older teenagers are unlikely to be as easily convinced, and won’t trust you if they think you’re lying. It’s okay to admit uncertainty, but do your best to focus on the positive actions that are being taken. Remind older children that thousands of children face danger and uncertainty every single day; in Third World countries without clean water, in war zones, in refugee camps – sometimes it can help to count our blessings and remember that we have safe houses, clean water and advanced medical care available. Making a ritual of everyone saying something that they are thankful for before eating dinner, or at bedtime, can help us all to focus on the positive.

autism, Home, parenting

My To Do list; get an EHCP, defeat the Tories

Monday morning, the first day back after half term. Ivy has been dropped off at school, complaining bitterly the whole time about how she doesn’t want to be there and hates everyone. Lily has astounded me by getting up on time, ready for our regular coffee date, where we head to the supermarket for breakfast and she helps me put a menu plan together and do the weekly shop as well as talking about the week ahead. I could live without the expense of taking Lily to breakfast every Monday, but it’s all part of a strategy to teach her about planning, the art of the To Do list and independent living skills. My current To Do list may as well open with Climb Everest given how overwhelming it’s looking.

  • Get an EHCP for Lily
  • Chase up a CAMHS referral and somehow obtain ADHD meds for Lily, without a six month waiting list, 12 weekly consultations and no actual progress.
  • Get a CAMHS referral for Ivy, as her previous therapist hasn’t made good on her promise to do it
  • Find a new college place for Lily
  • Chase up local services, Youth Support Team etc for help for Lily
  • Find a new NHS dentist
  • Sort out online prescription access for Lily’s epilepsy meds
  • Pay the interim utilities bill and call the previous company for a refund on the direct debit that shouldn’t have gone out
  • Contact CMS and find out what decision they’ve made out the reconsideration
  • Sort out how Lily can continue to receive her Decapeptyl shots locally, which might mean moving her to a different doctor.
  • Finish the writing commission I’ve got
  • Plan, order and then ultimately build a wardrobe for my room.
  • Fix the outhouse roof before it collapses
  • Fix Ivy’s door so she doesn’t get trapped in her room
  • Seriously. Something miraculous needs to happen in the kitchen/diner. We can’t go on like this.

This is all on top of the regular day-to-day To Do’s, the shopping, cooking, washing up, laundry, cleaning, kitty-litter-emptying kind of task. Frankly, even the first item has me wanting to crawl back under the duvet and give up on the day. Get an EHCP for Lily. You would think, given that she has diagnoses of autism, ADHD and epilepsy, that support would be automatic, that it would be a clear case of this kid obviously has special needs, let’s make sure she has the support she requires to finish her education and be helped towards independent living. But no, like every other family in the land, what then follows is battle after battle to have your child’s diagnosed condition recognised by the Local Educational Authority -or even by their school – and the necessary funding put in place to pay for the extra support they need. As schools have to demonstrate that they have literally spent thousands (£6000, I think) on support for your child before applying for an EHCP, what tends to happen is they refuse to recognise your child’s SEN, particularly with autism, and instead blame it on poor behavioural choices. Your child is now not autistic, they’re just naughty, probably because you’re a bad parent. Would you like to go on a parenting course? Actually no, Karen, I want you to apply for a fucking EHCP for my autistic child, like you should have done years ago.

It got so bad with Lily’s primary school that the Head wouldn’t even use the phrase Special Educational Needs, but would talk about Lily’s Additional Needs, despite her autism diagnosis. We would literally sit there correcting each other, me using terms like SEN, or even disability, and her changing that to Additional Need. Because if she used the phrase SEN, she would have to divert more funding to supporting Lily, and ultimately go down the route towards an EHCP. Having now received the paperwork from secondary school including Lily’s full pastoral record, it’s clear that she wasn’t coping at school and school weren’t coping with her. However, I was only contacted if she was disruptive in class. If she was staring out of the window for the entire lesson, not paying attention, not making notes, not learning… it didn’t matter. Sadly, for the entire time that Lily was at high school, I was fighting a toxic divorce, being dragged through court etc etc. There wasn’t enough of me left over to be fighting for Lily’s education at the same time – naively I trusted that the school would do the right thing for Lily, and by the time I realised that they weren’t, it was too late. When we were given a family support worker – which in retrospect was only offered because school were insisting that I was a bad mother – she made it her mission to obtain an EHCP for Lily. Even she was shocked by the school’s response – the SENCO laughed at her and told her not to bother, and she had a lot of difficulty obtaining the figures and paperwork that she needed. For the first time I could see the actual figures; while school insisted that Lily had plenty of support, this turned out to be one TA shared with 18 other students in the class. The school had failed to provide even the bare minimum of support that Lily needed, but then blamed and punished her (and me) when she then failed to cope.

Yesterday’s post at Trees of Sanctuary hit me hard, another friend struggling to get the support her child needs – but at what cost? The price we pay in terms of our own health and stress, the impact on family life that constant struggle brings, the frustration of finding yet another professional has let us down, has lied (this happens more often than you’d think,) has failed to do what they promised… it seems that the State wants us to give up and quietly walk away, handle things on our own, accept that our autistic kids will spend the rest of their lives holed up in their bedrooms, playing computer games – because that’s the default life position when they don’t get support. Lily’s support amounts to meetings in which she’s told she must try harder, do better, manage her behaviour. If Lily gets the support she needs, she has the potential to be a music composer and/or producer, making a decent amount of money and therefore able to hire someone (or use additional benefits to do so) to help her manage the life tasks she would otherwise struggle with. Without support, she will be unemployable, living in her bedroom, dependent on myself and then Ivy, affecting our ability to work too. That’s the future we’re fighting so desperately to prevent – all we’re asking is that our children be given the chance to succeed through getting the right support now – yet around me, I see so many families who have given up, or who never even started the fight, who have teenage or adult autistic kids that spend their lives on the computer in their bedroom. It all boils down to money, the lack of government spending- but the stupid thing is that so much money is wasted on tribunals and the like, or support workers whose job isn’t to provide real support, rather than spending on meaningful help. Support for autism has not been one of the major topics as the UK approaches a General Election this week, it’s not something I’ve heard mentioned at all. No doubt Boris Johnson would wave it around as a pre-election pledge if he thought it would win him more votes (remember David Cameron’s promise of a “disability passport of rights” to ensure all SEN kids received the necessary help?) – but after 9 years of cuts to vital services I’m amazed that anyone would still listen to a word that the Tories say. More money for the NHS? For education? They’ve had 9 years to do that, and have failed to do so, preferring to slash budgets to the most needy. If you vote Tory, you’re pushing our children under the bus.

autism, parenting

The Carer’s Log – a guide for parents

It says a lot about the state of my life that last week’s crisis isn’t even old news before the next issue is rolling in. The battle with Simon over child maintenance was instantly relegated to the sidelines when Lily was suddenly expelled from college, so much so that I had to remind myself to post off my statement and evidence in time to the CMS, caught up as I was in the new business of trying to find another college placement for Lily and fighting for the SEN support she so obviously needs. Meanwhile life continues, there’s no intermission doled out to hand you the space and time you need to handle whatever’s happening. So inbetween calls to local advisory services and colleges, I received an unexpected call from the London hospital that handles Lily’s hormone blockers for her gender issues. We’d already received an appointment for the previous week, which was then cancelled and changed to a phone call when I discovered the train fare would cost us over £300, and all because the clinic had forgotten to refer us to a more local service. But now the nurse was saying that our GP was apparently refusing to prescribe or administer the injection Lily receives every 10 weeks, so our only option was to travel down to the clinic to receive it alongside a final health check before they referred us to local services. With less than a week’s notice I was now left arranging travel – which ended up in an overnight stay as it was still cheaper to catch an off peak train the day before and stay overnight than it would have been to buy a peak ticket on the day of the appointment.

Given it was half term and Ivy was going off to stay with a friend, it seemed like it might be fun to spend a couple of days in London together with Lily. And, in the event, there were moments of fun. Except, that this was Lily, and so none of it can ever be straightforward. From the stress of trying to get her up, dressed, and out of the house on time for the train, to the meltdown on the train because there were no seats, to the tantrum when she inexplicably decided that I should buy her a full length leather coat right now, to absent-mindedly leaving her phone behind in the hospital toilets followed by a panic attack/meltdown until it was handed back to us, to giving me hell because we’d been sent up to the paediatric ward for her jab and Lily wanted it made clear that she wasn’t a child any more, to refusing to cooperate when the nurse wanted to measure her shoulders and hips as she’d not had to do it previously and she “didn’t trust it,” to her outrage at missing Halloween and how I never should have arranged the appointment in the first place (It wasn’t me, Lily, it was the hospital and this was the only day they could fit you in, otherwise you couldn’t have your blockers)… oh dear god. By the time we got home I was utterly exhausted – only to discover that Lily’s bedroom window was wide open, along with the heart-stopping fear that we’d been burgled. Thankfully, we hadn’t. But, I decided, I could be forgiven for choosing never to leave the the house ever again, particularly not with Lily in tow.

It’s hard, it’s so hard because this is what autism looks like – and for the most part it looks like bloody horrible behaviour rather than a recognisable disability. It’s hard not to get sucked in, not to get angry or frustrated by it. If Lily could do better, she would; that’s the conclusion I have to come to when her behaviour gets her thrown off the college course she absolutely loved. She wouldn’t have chosen to be expelled, she just can’t control the way she behaves when she’s anxious. And being autistic means that she’s anxious a lot, the world is a very overwhelming place. To make it worse, out in public most of the blame is put on me as her mother. I’ve obviously just raised her wrong, there’s still precious little understanding around autism and ADHD.

Recently I started keeping a Carer’s Log. A simple diary outlining what I’ve done that day that relates to handling Lily’s autism/ADHD and epilepsy whether it’s phone calls to arrange appointments, sorting out paperwork, or having to give her reminders to help her manage her time, or take her meds, or the time spent handling a meltdown or trying to adjust her behaviour. I’m not sure why I started, possibly a glimpse of intuition that this might become important in future, particularly for dealing with PIP/Carers Allowance claims. It’s too easy to feel crushed under the weight of right-wing rhetoric that labels disabled people as scroungers, to start feeling guilty for claiming benefits when the reality is there would be no way of coping otherwise. It’s only been a couple of weeks since I started, and already the Carer’s Log has been an eye opener. It’s too easy to overlook how much you’re actually doing as a carer, over and above what you’d be doing as a parent for a child without SEN.

How to keep a Carer’s Log

  • Decide on the format that’s going to work best for you, whether to write in a dedicated journal, or keep a document on your phone/tablet/laptop. It’s crucial that it’s easy for you to update on a daily basis, otherwise you’ll keep putting it off and will end up forgetting a lot of the detail.
  • Decide what time is best for updating your log, I recommend doing it in the evening so that the day’s events are fresh in your mind, however you might want to avoid using a screen device close to bedtime.
  • Make sure you record directly into your log rather than keeping random notes all over the place that you’re planning on updating into the log at a later time. Inevitably, you won’t get round to it, or will lose half of them.
  • Keep this separate from any records/files that you’re keeping about your child’s condition; I have a large file containing all of Lily’s medical history, educational records etc that I frequently refer to as needed. My Carer’s Log is recorded separately, not mixed into the rest of her records.
  • Update the log on a daily basis, even if you’re logging “Nothing to report” for the day, just to get you into the habit of doing it. However, I’ve not yet had a “nothing to report” day, there’s always something!
  • Absolutely everything connected to your child’s condition should be recorded, such as calling to make appointments for them, driving to meetings with school, time spent researching aspects of their condition eg recently I’ve spent a lot of time online looking for information about supplements and diet for ADHD. It’s easy to otherwise overlook these things and only record the time you spend directly dealing with your child’s issues. Even the fact that I usually have to send multiple texts to Lily to remind her to come home on time after youth group gets recorded!
  • If your child has toilet issues, these should also be recorded.
  • Do you spent days and days trying to persuade your autistic kid to take a shower? Make a note of when you started asking, and how long it is before they actually take a shower – this can be two weeks in Lily’s case! It also acts as a reminder as to just how long it was since they’ve bathed, rather than it being a vague thought in the back of your mind that it might be about time to chase them into the bathroom!
  • If your child takes medication or supplements relating to their condition, list these at the start along with a brief description of what’s involved; you can then write “gave them their meds” or similar on a daily basis rather than writing it out from scratch each time. But don’t forget to add in these details about meds, they’re obviously an important aspect of your child’s health but one that’s easily forgotten in a daily log as they’re so routine!
  • There are no set rules for format etc, so you are free to choose your own style, whether you prefer writing in bullet points or being more descriptive. You might need a mix-n-match style, using bullet points to document routine items such as medication or physical therapy, followed by a descriptive paragraph to record how the day went.
  • Try to make sure your Carer’s Log won’t be read by your child – keep it somewhere they won’t think to look, or give it a very boring title if it’s a computer file. For this reason, be careful about the language you use – it’s simply a record, not a judgement about your child’s issues and behaviour.
  • If you’ve had a particularly trying or exhausting day due to your child’s difficulties, you might want to add this in, eg “Today was very challenging.” You don’t need to go off on a three page rant, but it can help to record what happened, and ideas of how to prevent it in future.
  • You can also record things that worked, or ideas that you want to try in future.
  • It can also help to add in photographs- for example the horrendous pile of rubbish I recently unearthed from beneath Lily’s desk! If your child has a habit of dressing in unsuitable clothing due to autism, a picture can be a good idea before you get them changed. This can act as evidence during a PIP interview.
  • Educational struggles are part of your child’s condition, so list these are they occur, for example having to attend meetings at school because of their “behaviour,” applying for an EHCP, or even the ways in which you have to intervene to keep your child calm while they’re getting frustrated due to homework. Yes, all kids get frustrated with homework at times, but most kids won’t smash up the computer or punch their little sister as a result… which is why you’re constantly on the lookout for your child’s warning signs and intervening as necessary.

A Carer’s Log can help you to feel validated in your role as your child’s Carer – a role which demands you go above and beyond the normal role of parent, in a society that constantly devalues both your and your child’s experience. It can act as a valuable record and evidence that you can refer back to when dealing with authorities, such as applying for PIP or an EHCP. Hopefully too it will allow you to treat yourself with more compassion if you’re dealing with the self esteem issues that seem to inevitably arrive when you are struggling with a child whom everyone labels as difficult. The Carer’s Log makes it apparent just how hard you’re working to help your child manage in daily life. Respect.

autism, parenting

The Big Day (part two)

As soon as I walk into the room I know it’s a stitch up. Once they trot out a second or even third member of staff, you know you’re wasting your time. As the Centre Manager ushers me into the tiny room, the Learning Support Manager is already waiting, and there are immediate apologies that the lead staff member for Lily’s course couldn’t make it. I haven’t even got my coat off and I know it’s game over.

The Learning Support manager is basically there to make sure they’ve ticked all the legal boxes, so there’s no right to appeal. She runs through our previous emails and the college’s SEN code of practice, pointing out that as an independent training provider they’re not bound to the same SEN rules as other FE institutions.

At this point it doesn’t matter what I say, they’re kicking Lily out. It doesn’t matter that she’s been doing well until now, that it was one incident that got out of control, one lesson that went wrong in over a month of attendance, she’s out. It doesn’t matter that she’s been consistently let down, has never been given the support she needs, she’s out. It doesn’t matter that I’m still fighting to get her the ADHD medication that she needs, or appealing the local authority’s refusal to give her an EHCP, she’s out. It doesn’t matter that there are extenuating circumstances, the stress that we’ve been under as a family due to domestic abuse, she’s out. I may as well stick pencils up my nose and sing the Russian National Anthem, nothing I say is going to make a difference. I point out that I came in the hope of having an open discussion about how to support Lily and move forward from this point and it’s devastating that they have already drawn their conclusion and aren’t prepared to listen. I question their decision process and point out that no one has been asked to advocate for Lily before the decision has been made.

“Well, that’s what you’re doing now,” the centre manager tells me.

“But you’ve already made your decision,” I repeat. “Who advocated for Lily during your ‘investigative process?'”

I get nowhere. The Centre Manager then gives me the bullshit about how they could theoretically take Lily back, but it will only leave us in a worse position as by then the 6 week probation window with other colleges will have closed so transferring her won’t be easy and blah de blah, so this is in everyone’s best interests as he doesn’t want to leave me in a worse position, it’s best if she goes now. One thing I really hate is when they try to pretend they’ve got your child’s best interests at heart while they’re delivering the killer blow. Fuck off, basically.

“Forgive me for being bitter,” I tell him. The fact that we’ve relocated 150 miles for Lily to be able to attend this college doesn’t matter at all to him. They’ve failed to provide the support she needs, because they can’t afford to provide further support. The local authority won’t provide the support that Lily needs. No one will. No one ever has. I don’t understand how Lily can be identified as having a Special Educational Need by the EHCP panel, but then be denied an EHCP. It feels very much like bullshit. When Lily then fails due to this lack of support, she (and I) are blamed and punished. There’s no point in staying any longer and I leave, trying to hold my tears in until I’m out on the street.

In that moment, I hate them. I hate everyone. All the people around me with their petty concerns, who haven’t spent over a decade fighting to get help for their autistic child. All the people who lead nice normal lives, without having to battle domestic abuse, special needs, who don’t know what it’s like to have life knock you over and kick you again and again and again. I feel suicidal. There seems to be absolutely no point in carrying on, I end up at the same place, trying yet again to find the strength to pick myself up off the floor, dust myself down and start over. It’s getting harder and harder to keep on starting over, to keep on fighting for things that don’t seem to affect the majority of the population.

I lock myself into the toilets at the nearby library, and cry. When I’ve got myself together enough to face going back outside, I end up in the nearest Wetherspoons, ordering a vodka-coke and packet of crisps. I don’t care any more. I’ve still got to go home and break the news to Lily, who I know is fully expecting Mum to pull off a magic trick and allow her to stay on the course, no matter how many times I told her that I might not succeed. I have to deal with Ivy, who didn’t want to move away from her home town in the first place, who now has to deal with the frustration of Lily blowing the big opportunity that we moved here for. Meanwhile the planet burns, and politicians quibble about the DeathNote that is Brexit. We’re approaching an election and I want to beg people not to vote Tory, because a decade of Conservative rule is the reason why Lily has never had support. I don’t want to be part of this world any more. What’s happened today isn’t exceptional, it’s a battle I’ve fought many times before. I’m still having to battle Simon in order to get him to stop lying to CMS and pay the child support he legally owes us. I’m still having to battle the health system to give Lily the help she needs. And hell, Lily was first expelled age 5, from kindergarten, so you’d think I’d be used to it by now. But something has tripped inside me, a switch pinging off with this fresh bout of despair. Some crucial part of myself just died. Hope, maybe. Compassion. Duty. Doing the right thing. It’s got us nowhere. The sad reality is that if I’d lied about the EHCP, if I’d claimed that Lily’s college place was still dependent on her being given one, then she probably would have got it. Except then she wouldn’t have been accepted by the college. We can’t win.

autism, parenting

The Big Day (part one)

The Big Day. I wake at 5.30, lie in bed with my mind racing until I give up and turn on the Calm app for my daily meditation. It’s so early that the cats don’t even jump off the bed to demand breakfast. I’m at the GP’s surgery with Lily before the receptionists are, the first in the queue for an emergency appointment. We’re told to come back at 8.50, and end up killing time in the nearest cafe, where a woman inexplicably dressed up as the Queen of Hearts makes us tea and an Americano, before disappearing into the back to handle her deliveries. The Meat Man is coming.

At the doctor’s, Lily wants me to do the talking. I explain the difficulties that she’s having, how her aggression has got out of control, and that we now want to try ADHD medication. The doctor turns to Lily.

“So now that Mum’s said everything she wants to say, how do you feel about all of this?”

Inwardly, I groan. Here we go again.

I can already tell from the doctor’s demeanour what I can expect. Oh yes, she’s friendly and acting like she’s here to help, but I’ve seen all of this before. Yet again, I’m going to be written off as a pushy, neurotic mother. For once Lily manages to speak up, explaining that she wants to try medication to try and help control her anger. The GP explains that she’s not going to send us home with any pills today, but she’ll give us a referral to the Child and Adolescent Mental Health service, that should be our first step.

I try to make it clear that this really isn’t our first step, it’s our last resort. I’ve been fighting for support for Lily for over 11 years now, and got nowhere. She’s never had the help she needs for her autism or ADHD. We’ve done CAMHS, we’ve done CYPS, we’ve done Family Therapy, we’ve done Early Bird, we’ve done art therapy and play therapy, I’ve done the two different parenting courses that they insisted on sending us on, I’ve paid privately to attend workshops on autism and challenging behaviour, even a Non Violent Communication weekend. I’ve read countless books and websites to help understand her difficulties and find better coping techniques. It’s obvious to me that Lily has additional problems; Pathological Demand Avoidance and/or Oppositional Defiance Disorder, neither of which can be treated by conventional parenting/discipline techniques, nor by talking therapies. Only, I’m not allowed to insist that these diagnoses are taken into account, because I’m her mother and not a medical professional, so if I mention this it’s another strike for the Neurotic Mother award. Of course most medical professionals won’t even recognise these as real conditions and prefer to blame the mother’s parenting style, even when you have other kids who are miraculously unaffected by your alleged poor parenting techniques. Whatever I try, it’s Catch 22. I have effectively been sitting in the GP’s office for 11 years now. This is not the first step, this is we’ve run out of options, we’ve tried everything except ADHD medication and it’s now time to give it a go.

The newspapers would have you believe that doctors were handling out Ritalin to kids like sweeties at Halloween. Yet we’ve never been offered medication, nor have I ever previously asked for it. Lily has threatened me with a knife, was suspended from school for being aggressive towards a staff member, as well as incidents with other kids for which she spent time in Isolation, and is now facing expulsion from college for being aggressive towards a tutor, including throwing a chair in class. When her anxiety is out of control, she responds with aggression. The reality is that she can’t help it; this is a neurochemical reaction caused by a diagnosable condition. No amount of talking therapy or parenting courses are going to change that. But medication might stand a chance.

I am so tired of being fobbed off by professionals. I am so tired of being treated like I’m neurotic every time I try to get Lily the support she needs. Because this isn’t actually about autism or ADHD, it’s about money. Lily wasn’t given the support she needed at school because of the costs involved. In order for her to be given a statement/EHCP, the school would have to demonstrate that they had spent £6000 on supporting her needs. Faced with ongoing budget cuts they clearly weren’t going to. I tried privately to get her an EHCP and got through to the final stage, meaning that the Educational Psychologist had identified that she did have a special educational need – but she was turned down because she’s been offered a college place. As a parent, you want to scream at that point – the issue isn’t her getting a college place, I managed that for her, but being able to stay in college. One month in, and that’s fallen apart. Oh, but here’s the kicker – the college only has places for 21 students with an EHCP, which has already been reached, so if Lily had been granted it, and been promised the support she needed, she wouldn’t have then been given a place at the college. In the meantime, the college has no budget to provide for her needs.

This is the reality for any parent of a child with SEN; it’s down to money. It’s not about their autism, their ADHD, it’s down to a decade of Tory Party cuts. If Lily is expelled, she will be classed as NEET – not in employment, education or training. I’m then punished financially for that, by having child benefit stopped, and Simon can pay less maintenance for her. So the system that has failed to provide Lily with the support she needs to remain in education – due to economic cutbacks that have benefitted wealthy Tory supporters – then punishes me financially for its own failings. Smashing, innit?

I have no choice but to smile sweetly and accept the CAMHS referral, although I pointedly ask how long the waiting list is likely to be. It could be six months, even a year, and we need help now so that Lily can return to education. We don’t have any more time, either with the GP or to wait around for another pointless referral; we’ve been through 3 rounds with CAMHS already, to no avail. Meanwhile I’ve scheduled a meeting with college this afternoon, and I need to be able to offer them something, a concrete assurance that it won’t happen again. But if I push any harder with the doctor, then it merely confirms her opinion that I’m the one with the issue, not Lily. From past experience, it’s only mothers who are treated this way, not fathers. And had Lily attended the appointment with a chaperone from college, say, the outcome may have been different again. After 11 years of struggle, I’m tired of fighting to try and get what should have been freely offered over a decade ago. When will autism be properly funded?

Past experience has shown that there are plenty of people getting paid to work within the SEN industry but none of it seems to be trickling down to support the kids that need the help. One time I attended an autism support meeting, the only parent there due to poor publicity – meanwhile the 6 professionals in attendance brought out their packed lunches and chatted away to each other, but not to me. That’s 6 professionals being paid to attend a meeting to support parents of autistic kids, which was in reality just a subsidised jolly. Or the autism support worker who only worked in schools and didn’t do home visits even when we explained that Lily was being home educated. So you’re not actually offering any kind of support then? Meeting after meeting with school staff and SENCOs with no real change, no progress, no actual support. One even questioned why Lily would qualify for DLA/PIP, before deciding for herself that her ADHD meant she’d need to eat more meat! Perhaps job descriptions for SENCOs should demand that they actually have experience of SEN? Meanwhile, I’ve a train to catch…

autism, Home, parenting

SEN and the art of fighting

The saying goes that one day you will look into the mirror and realise you’re turned into your mother. In my case I definitely skipped a generation. When I look in the mirror, it’s my Nana who looks back at me, only with much less vivacity than she ever had. Tired, stressed, defeated, a woman who has given up on herself, that’s what my reflection pronounced. It didn’t seem to matter, it wasn’t as if I was going anywhere anyway.

Then came the week of hell – technically probably Week of Hell 346 – and the devastating news that Lily was probably about to be expelled from college, one month into her course. After the initial shock and despondency had eased, I realised that Lily’s only chance was for us not to wait for the phone call bringing the final decision, but for me to insist on a meeting with the college head and advocate for her.

For someone browbeaten by stress, exhaustion and social anxiety, this was not a particularly welcome realisation. However, it was the only plan I could call up with – an emergency GP appointment on Monday morning to demand a referral to an autism/ADHD specialist with a view of trialling medication, followed by a trip to the city centre to speak to college.

Over coffee in a local cafe I sat and wrote down the gist of what I wanted to say, how Lily has never had any support for her autism and is then punished when she’s failed to manage. How badly her school let her down and how I didn’t realise until it was too late as I was fighting the abuse from Simon all that time. That Lily has suffered from that abuse and been left feeling angry and confused – and that Ivy has spoken of Lily and Simon having physical fights; her own father has modelled violence towards her. That she has a slow cognitive process and reacts before she can think, that she doesn’t seem to understand consequences or cause and effect. How her anxiety leads to a need to be in control at all times, and how threatened she would have felt by what her tutor was saying to her in front of everyone. That she deserves another chance, it’s not fair to expel her for messing up in one lesson when she’s been a good student until now and the problem was largely cause by a lack of support and understanding.

As I write, my own frustration grows. Listing Lily’s difficulties, it’s unbelievable that she has never had support. That for purely economic reasons, she’s been kicked to the kerb time and again, left to sink without the support she needs and then blamed for her behaviour when she’s not managed to conform to rules that she doesn’t understand or that create massive anxiety for her.

This has to stop. We’re running out of time.

It is beyond time that Lily started getting the support she’s always needed. And clearly, it’s going to be down to me to fight for it, even while I’m still having to battle Simon over child maintenance. On the way home I stand in the beauty aisle in Tesco Express, studying the hair dye. That evening Ivy smothers my head with it, while instructing me on the Curly Girl method. After I’ve washed it out, she nervously trims my hair, snipping each curl individually as the book prescribes. I keep reassuring her that no matter what she does, it can’t look any worse than it did, and after all I was made to cut Simon’s hair for years without any clue as to what I was doing.

I’m not a hairdresser per se, but I have used scissors and I do have hair, we joke, misquoting the pig from Bear in the Big Blue House. I finally find the makeup that’s stayed buried in the bottom of a packing box until now. This is my war paint. These are my battle stripes. I will not walk in defeated and beg, I will go in ready to be listened to.

autism, Home, parenting

Meltdown

I’m in the supermarket with Ivy when my phone goes – Lily’s college. Already I’m striding towards the exit as I answer, my heart beating faster. Last week the call from college was because Lily was having a seizure, meaning dropping everything, abandoning plans to have dinner with my parents and instead driving 90 minutes to reach her in A&E. Has she had another seizure?

Instead her tutor asks me if Lily has been in contact. She hasn’t, and he explains that there’s been an incident, and Lily has stormed out of college following a heated argument with one of the tutors. Her guitar had been slipping out of tune and he’d told her to use one of the spare guitars. I wince – this was Lily’s first day with her brand new guitar, she’d been looking forward to it. I knew that her anxiety levels would have been going through the roof if there was something wrong with it, or if she feared that she wouldn’t be able to use it. She needed things to go right, to be given enough time to tune it and continue playing, for her to keep control of the situation. But now the immediate issue was that she had run off into the city on her own, leaving her belongings behind her.

Ivy and I both try calling and texting her, but there’s no response. We realise she probably doesn’t have her phone on her, it would have been in the bag that she left behind. I call the college back and let them know, trying to reassure myself that she can’t have gone far without any money. She’s likely just sitting it out somewhere nearby, waiting for the class to finish before she goes back in for her stuff. Her tutor kindly offers to go back outside to look for her again, and shortly afterwards I get a text from Lily to tell me she never left the building and is now sitting on the stairs talking to her tutor.

The immediate panic is over, but now it’s time for the longer term consequences.

It takes me over two hours to try and calm Lily that evening, she tells me she is traumatised and becomes angry and aggressive as I try to get the story out of her. In the course of the conversation it becomes clear that she was aggressive and swearing at her tutor, and that she threw a chair – not at him, but not a good idea in a college that’s packed full of expensive musical equipment. Lily sobs as she recalls how her band went on practising without her, “They don’t need me, I’m useless,” and that she has no friends and thinks everyone hates her. To prove this, she shows me an abusive message she’s received from another student, she doesn’t even know how he got her number. She doesn’t know if she can face going back, and I make it clear that she has no choice, she has to remain in education. That she has loved this course so far, and it’s stupid to throw it away over one session that’s gone wrong.

Approaching 10.30 I tell both kids that they should be asleep by now, they need to settle down. I usually do this around 10pm every night, but I can’t force them to actually go to sleep. Around half midnight I hear Lily’s door as she goes to the bathroom, and know that yet again she’s stayed up too late. Lack of sleep is one of the likeliest causes for epileptics to have a seizure, but nothing I say can get Lily to go to sleep early enough.

Next morning she doesn’t get up on time and I have to wake her and tell her she needs to go in. Typically, she flies downstairs at the very last minute, swallows her epilepsy tablets – I have also just discovered that she’s run out of her 500mg pills without telling me, another thing to sort out today – and grabs the decaf coffee, breakfast bar and apple that I’ve left out for her. She refuses the sandwich I’m trying to make for her – I’ve also discovered she’s been skipping lunch in order to save up money, but can’t be bothered to make herself a packed lunch instead. So basically, she’s been going into college each day without enough sleep, no breakfast and then skipping lunch. It’s disastrous for her epilepsy, and likely contributed to her seizure last week, but is also likely to be making her even more irritable and irrational. I get her to promise that she will have lunch, and remind her that she needs to apologise to her tutor, before getting her out of the door on time at 7.30.

By the time I’m driving Ivy to school an hour later, I’m fighting back tears as I try and chat to her while simultaneously mentally rehearsing my To Do list. Go to the GP surgery to sort out online access and get an emergency prescription. Call college. Call the Family Support Worker, even though I don’t have her number, how can I get her number? Does Lily need a further diagnosis, how can I get that, no one will listen? Write the cover letter to the CMS and send the evidence, hopefully the letter I requested from our previous support worker will arrive today. Call and cancel that subscription before I get charged for it. And so on, to infinity and beyond.

Driving home, I park and walk into town to sort out everything at the doctor’s. Of course, the GP doesn’t sign off prescriptions until late in the afternoon, so I will have to go back this evening and hope that the pharmacist can fulfil it without having to wait to order it. I’m walking back through town when my phone goes – it’s college. The man on the other end tells me that he has no choice but to suspend Lily. He tells me that the tutor is terrified, that Lily threatened to kill him. I ask whether it will just be a day’s suspension, whether she will be able to go back next week, or whether it may escalate further, and he admits that he will be undertaking an investigation but that Lily may well be expelled. I’m left begging him not to expel her, swallowing back my tears and my pride. “She’s sixteen,” I find myself saying, “if she gets kicked off the course, she’s got nothing, it’s game over, please don’t expel her.”

He fobs me off and I know from what he’s saying, his tone of voice that it’s already highly unlikely that Lily will be allowed back onto the course. The course she loves, that has lit her up for the first time in her life. Once again she’s not been provided with the support she needs, then been blamed and punished when she’s failed to cope; but now this is not school and the consequences are far more severe. Even I find myself blaming her, For God’s sake Lily, why can’t you behave yourself? Why would you think it was okay to behave like that? In the space of a few mindless minutes, Lily has destroyed the thing she loves most, the college course I’ve spent so much time and energy to get her a place on, the opportunity that we relocated for her to have. The pavement beneath me feels like quicksand. There are no second chances and I have no idea what happens to us now.

Creating a life worth living, parenting, Self Care

Fire-fighting and the Magic Button

“I’d like this year to have less fire-fighting,” I tell my counsellor. “I want things to be a bit calmer.”

She looks at me. “Is that realistic, given Lily’s difficulties?”

The impact of her words hits my chest like a punch. As ridiculous as it might seem to an outsider, I hadn’t actually considered that. I’d merely assumed that I was doing something wrong and that the stresses and emotional turmoil we endured over the last year could hopefully begin to fade away if I just tried harder, worked on myself, operated from a place of stronger mental health. Maybe meditating, drinking green smoothies, reading the right book; somehow there had to be a way of finding normality, of making everything okay. The Magic Button, in other words.

When you have a child with difficulties such as autism and ADHD, people look to you for the Magic Button. Teachers, grandparents, even going way back to kindergarten and crèche workers will all at some point sit you down and inform you that your child isn’t responding to them the way he/she should be, and is misbehaving (“making poor choices” in modern day teacher-speak) and so could you please give them the Magic Button? You know, the one key phrase or action that means your child will suddenly switch off their challenging behaviour and behave perfectly for them.

Over and over you explain that there’s no quick fix, no instant solution, no Magic Button. That you really have nothing to offer other than the general advice to try and keep a sense of humour, patience, very clear instructions etc, and that some days none of it will work. That Lily is genuinely not capable of holding it together 100% of the time, that 80% is pretty good and she just can’t manage that final 20%. They won’t accept that though. If she’s capable of “making the right choices” 80% of the time, surely she can do this 100% of the time? She just needs to make better choices, that’s all. So if you can give them the Magic Button, they can get her to 100%, tick all the boxes and go home happy.

“There is no Magic Button,” you find yourself explaining yet again. My God, you wish there was.

I hadn’t realised that I’d got into that same mindset myself. Expecting myself, or an as yet unknown professional to suddenly come up with the Magic Button that would “fix” Lily’s behaviour. If I found the right supplement, or therapist, or managed to explain things to her in the right way, it would all click into place and life would begin to flow more smoothly. It’s very hard to accept that this isn’t an option. Weirdly, it’s hard to accept that maybe I’m not actually doing anything wrong.

Of course, it’s impossible to tell how capable Lily really is. It seems that she can be intelligent and relatively capable when she wants to be, but demand avoidance and Oppositional Defiance Disorder combined with ADHD mean that it’s virtually impossible to motivate her when she’s not interested. Given that she still refuses to do any studying, despite her GCSEs rapidly approaching this year, it’s evident that her grades could be improved if she put even a tiny amount of effort in. But she won’t. And there’s the issue – do I accept that refusal as part of her condition, or do I continually fight against it? Similarly, should she accept that part of her make-up that leads her into stubborn refusals and defiance, or should she work to change it? Can it be changed, or even improved a little? I don’t have any answers, see-sawing between feeling sure that Lily needs pushing to do better, or wondering whether in fact she’s more disabled than anyone gives her credit for.

“It’s like trying to push a double decker bus up a hill,” I explained to the counsellor, describing how it felt to battle to support Lily every day. “Exhausting, demoralising and you can’t make any progress upwards, all you’re doing most of the time is trying to stop her from sliding back down the hill into the swamp.” The swamp – my fear for Lily, borne out by too many of the ASD/ADHD families we’ve met – of a child/teenager/adult who never comes out of their bedroom and spends their entire life playing computer games, rather than existing out in the real world in any meaningful way. So what? some people might say, the kind of just let them do what they want and keep them happy philosophy that I’ve learned doesn’t work with Lily. A life spent playing computer games in the bedroom is a life only half-lived – and when you know your child has more to offer than that, it’s heartbreaking to see their gifts go to waste. Lily could achieve a lot with her music, if she could manage to stay on track and put some effort in, particularly if this was backed up with the right educational support. And there goes the next major issue, the total lack of provision for autistic kids, which warrants an entire post in itself. Every single day brings the same battles over the basics; getting up on time, cleaning teeth, studying, bathing, chores, homework, getting off the computer, bedtime… “What happens if you just don’t?” one mother asked me. Then she won’t do them. She simply doesn’t get out of bed, misses school, smells bad and the mouldy dishes pile up in her bedroom while she builds her Minecraft empire late into the night. There’s choosing your battles and there’s what if all of it’s a battle? Because if you ease off, even a fraction, the bus starts to roll downhill, likely flattening you in the process. And then there’s the phone calls from school…

That week, the same quote keeps appearing in different guises. You can’t calm the storm, you can only calm yourself. You can’t stop the waves, but you can learn to ride them. A sense of acceptance is beginning to form, the tiniest seed of realisation that needs to be nurtured; I need to detach. I can’t stop the storm, but I don’t need to hurl myself into the raging waters. If life is never going to be smooth or easy – if the firefighting is going to be endless – then I need to take a step back and find my anchors, develop the self care practices that are going to keep me calmer and help me cope better. I’m never going to be able to stop the stress from arriving, but perhaps I can try to create the space in my life to help me deal with it. A combination of detaching emotionally so that I’m not getting hurt on a personal level by whatever’s happening, while also vastly improving my own self care and support systems so as to be able to stand stronger and not crumble each time the storm hits. The image I have is of being able to watch the storm through a window, rather than battling to survive the elements in a tiny boat as I’m battered by wave after angry wave. That’s the idea, yet turning it into a reality remains an unknown quantity. Still, it feels that I’m sitting with the right questions at least, even if I don’t yet have the answers, nor the Magic Button. Perhaps the Magic Button was always the individual’s coping mechanisms, and not about the SEN child at all.

A Year to Heal, Creating a life worth living, parenting

The trouble with CYPS

Another CYPS appointment; drive over 11 miles to school to collect Lily, drive 11 miles straight back to the clinic where the session is held. Sit in a waiting room where Heart FM is playing at full blast, in case Sarah, the therapist decides to involve me in the session. The chairs are ridiculously uncomfortable, the inane shouty DJ is giving me a headache and there’s nowhere to get a cup of tea. I wait for half an hour, trying to use the time to answer emails, before I’m summoned into the room. Sarah begins telling me about how she’s been learning about Lily’s interests and would I like to hear about what she’s been doing on the computer? I bite my tongue before I can point out that I live with Lily, that the computer is in the living room and therefore I get to see and hear what Lily is doing on the computer. Every. Single. Day.

Sarah tells me what Lily has been doing on the computer and asks me for my reaction. Lily’s computer use is highly problematic for us as a family; she becomes obsessive and addictive while on it, and entirely disregards all of the rules and agreements that we’ve made about it, namely that she needs to have done her homework, revision and any outstanding chores before using the computer. Time and again I’ve had to drag myself out of bed to tell her to get off the computer and go to bed, even after midnight. While gaming online, she yells, screams and swears at the top of her voice no matter how many times I intervene and tell her not to. If I try to turn the computer off, she physically fights me to stop me – the only thing I can do is then confiscate the entire thing when she’s at school. Rather than do what it takes to get the computer back – chores and homework (and by chores I literally mean one small task per day) – she then resorts to aggression or emotional blackmail such as threatening to kill herself if she doesn’t get it back. She switches it on as soon as she gets back from school, or first thing in the morning if there’s no school, and will remain on it all day and late into the night. If Ivy needs to use the computer for homework, there will be yet another fight. Lily will promise anything to get the computer/internet back when it’s in Time Out, but will never stick to those agreements. She has posted videos on YouTube in which she’s ranting, swearing and being aggressive, and refuses to take them down, has posted one in which she was improvising a flamethrower in Simon’s kitchen, and I narrowly managed to prevent her posting a video in which she cried hysterically while claiming she’d been diagnosed as a psychopath. She simply has no concept of the damage that she could cause for herself or others, that dodgy online stuff has a nasty habit of reappearing in the future, and so I’ve banned her from “vlogging” – yet another rule that she entirely disregards.

Sarah is aware that I’m broken, exhausted and struggling. She’s aware that computer use is a contentious issue. Yet she seems displeased when I respond through gritted teeth that while it’s great that Lily has for example made some music on the computer, she shouldn’t be playing on it unless she’s done her homework and her chores. She sends Lily out of the room and essentially tells me off, albeit couched in friendly therapist speak, for not managing to be enthusiastic about Lily’s computer use. That I’m too critical, I’m not affectionate enough, that she has a duty of care towards Lily and needs to ensure Lily is not subjected to emotional harm. Really? I think, Where the hell where you when Simon was subjecting the three of us to severe emotional and psychological abuse? How come all the evidence I’ve gathered, including the audio recording that Lily made of him being hugely abusive and attempting to alienate them from me has been entirely ignored by the authorities? Seriously, you’re going to insinuate that I’m being emotionally abusive because I can’t fake a happy face about Lily breaking the computer rules on a daily basis? Sarah goes on to point out that last week’s session was about addressing my needs and we’re now getting support from Early Help. Um – do you mean the session where I was kept waiting for over half an hour, feeling worthless because I’m evidently not important enough for anyone to speak to, and triggered because that’s the kind of thing Simon used to do? Also no – I’ve had a referral to Early Help. I’ve not had any actual help yet. So basically, nothing has changed since we first walked in to the clinic a month ago, yet Sarah is acting as if I’ve now had all the support in the world and the issue is that I’m just not patient and positive enough around Lily. Sarah also appears to have forgotten that she brokered a deal with Lily about her computer use during the last session, one which Lily has entirely disregarded; evidently Sarah is not going to hold Lily accountable for this, but rather is reinforcing Lily’s poor behavioural choices, making me look like the Bad Guy for insisting that Lily follows the rules.

Lily was referred by the pastoral team at her school as an emergency case. At the time she’d punched other kids at school, was acting aggressively and threatening members of staff, and was disruptive in class, claiming she could see people who weren’t there, or demons climbing up the walls. She had been self harming, and her behaviour was becoming more and more bizarre as she imitated characters from her favourite anime, literally living out her day as a fictional character. Also – and the part which seems to be continually overlooked – she had threatened me, firstly with a heavy stone pestle and then with the kitchen knife. What I find most disturbing – as well as the knife incident – is that she was deliberately faking having psychotic episodes. She didn’t really see people or demons, she was acting out. The self harm was carefully controlled, scratching rather than cutting, and displayed to others at school. In addition, the only time she ever shows me affection is when she wants something. Every time. If she starts cuddling up to me, I can feel myself getting tense because I know she’s about to demand something from me. Sarah was emphasising that Lily was a child with diagnoses, but then again she had Lily down as being 14. Lily will be 16 in three months. If she continues punching people and being aggressive, she’ll get arrested. If she continues acting out like a crazy person, she’ll be sectioned. It doesn’t matter to the police that she’s deeply immature or autistic, if she’s behaving like a menace to the public then they’ll take action against her – and as she will continue to be aggressive towards the arresting officer, the situation will spiral out of control. I suppose I’m lucky that we don’t have guns. In America, Lily would have been singled out as a potential school shooter. I’m not trying to make some kind of sick joke – she would literally be on the “concern” list, invited in for regular chats with the school counsellor as her behaviour has been so extreme.

If Lily was my partner, people would be urging me to leave her; the pathological lying, the aggression, the total lack of regard for other people. But she’s my child, therefore I’m expected to not even complain. The reality is that I need respite, it’s a lot easier to manage her behaviour if I’ve been able to take a break from caring for her 24/7. When you’re having to fight the same battles day in day out – over issues as simple as Lily cleaning her teeth, or taking a bath, never mind homework and computer use, it becomes exhausting and demoralising. When you’re dealing with aggression day in day out, it wears you down and erodes your self confidence. If I got a job at a specialist school for autistic children, I’d be given training and support. As a parent it’s a case of just getting on with it – or the offer of yet another parenting course in which you’re told to be positive and enthusiastic, or even to just give the kid exactly what they want to keep them quiet. Broke the computer again? Oh well, let’s buy you another one. I wish I was joking, but that’s what the advice on Challenging Behaviour workshops boils down to. Nobody ever works one-to-one with your child on a sustainable therapeutic basis; instead the onus is always put back on the parent; untrained, exhausted and demoralised, to somehow wave a magic wand and make it all better.

We should have had a referral to CYPS about seven years ago. It should have been automatic when Lily was referred to the Tavistock with gender dysphoria, but we were knocked back. We’ve had one six week block of art therapy for her about five years ago when the service was still CAMHS and Lily was newly diagnosed with ADHD, but several rebuttals since then. I’m aware that children’s services are woefully overstretched and underfunded, but I refuse to say that we’re “lucky” to have had the limited support that we’ve had. It’s a disgrace. Even before she’d met Lily, Sarah was hinting that perhaps talking therapy might not be appropriate and seeming very much like she wanted to take us off her case list before she’d even started, the easiest way of clearing out the waiting list. The trouble is there is nothing else. If CYPS don’t help us, it’s the end of the road, unless I pay for private therapy. Yet it’s clear that at the moment, I need therapy myself – if I go under, both of the kids go under, and I can’t pay for all of us at once. We might only get 8 sessions with CYPS, and Sarah is going to be moving away halfway through those, leaving Lily with someone else – my next fear is that we’ll get no further than essentially having two rounds of getting to know you sessions with two different therapists, and no actual progress will be made. In the meantime I’ve now had four occasions of leaving the CYPS clinic feeling utterly demoralised to the point of suicide. I’ve had to sit on a park bench, sobbing in public until I could calm down enough to drive us home, knowing that if I had a knife in my bag I’d be using it on my wrists. Each time, I’m left fighting to survive, building myself back up before trying to repair the additional damage that has been done to the relationship between Lily and me.

A recent documentary showed how nationwide CYPS is underfunded and overstretched, and that children and young people are repeatedly being turned away while their problems grow worse. As a parent it’s heartbreaking and terrifying to watch your child’s condition worsen week by week while not being able to get them the help they need – unless of course you can afford to pay for private treatment. Frustration and anger build as GPs refuse to even attempt to refer you to further services. Again and again you’re told that there’s nothing they can do, or that your child’s problems aren’t serious enough, while you watch your child slipping further down, further away, losing them a bit more each day. Your stress and anxiety build, until it reaches the point where you need help too, and your own ability to cope and support them diminishes. And because the “support,” if and when it arrives, has been so hard-won, you close your eyes and pretend that it’s fine, it’s making a difference, even when it’s not. You don’t dare complain for fear of losing everything. I’ve met countless families where this is the nightmare reality. Our kids are stressed and sick and left to get on with it. Our autistic kids are entirely ignored and unsupported. Meanwhile no one is taxing the rich or the corporations and the luxury goods market is at an all time high. A local aristocrat featured in a documentary about the wealth divide, shrugging her shoulders that “poor” people were just jealous of her lifestyle and needed to work harder (she herself had married into a titled family.) No. The system is stacked against us, social mobility becoming increasingly harder in a world of Zero Hours contracts, huge university fees, student loans, eye-wateringly expensive property prices and precious little job security, not to mention the nightmare that Universal Credit has been. But we’re not jealous of Cartier watches and polo ponies. We’re angry that our kids are being left to rot so that the rich can feel even richer.