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.