- Joe Sims
Hello lovely 500, With schools going back this week, lots of kids excited to be back with their friends and some parents finding themselves with a bit more time for all the other aspects of their lives. However we know that’s not the story in every household. Our nomination this week comes from Rebecca for a friend whose work supporting her kids absolutely doesn’t ease up now. We send Lotte our love and hope that this donation gives her a chance to do something nice for herself and catch a bit of a breath as she continues to be a warrior mum! And we send our best to all the warrior parents and carers of all kinds out there!! Lotte has battled with MH issues bravely and publicly in her blogs snd in Huffington post but had to give this up as the calls on her time with two children both with SEND needs and keeping her own ship steady has taken over her life. She’s a woman of great generosity, kindness, steel and talent. I know as family they have done everything to take the hand they’ve been dealt and find the joy In it. So when I read this post I wanted to give Lotte a few of the treats snd sense of autonomy I know she is lacking. I have been a carer. A lot of this resonates. But I always knew my caring term would have a defined limit. Lotte’s is open ended. She knows, I know other people have other challenges. But I know her MH was already delicate snd David’s compromised by looking after her before the children. The magic that is the care from 500 reasons. Knowing you aren’t alone would be timely. Carers allowance is £67 per week. It’s the lowest of all benefits because you’re supposed to care on top of working or live off your partner. I’ve written to MPs about this. And that is their stock response. Anyway enough for me. Here are Lotte’s own words. From a public Facebook post: Thanks, Rebecca. “As a parent of a child who struggles with mental health and with special educational needs you basically have to become the expert, not only of your child and their needs, but also of what needs to be put in place to support them... It doesn’t seem that services that are supposed to help will willingly help – you literally have to fight every battle to get them to help you.” https://www.theguardian.com/society/2021/aug/15/i-cant-work-the-mothers-left-to-fight-alone-for-their-childrens-mental-health-care?CMP=Share_AndroidApp_Other&fbclid=IwAR2KaipoJQ414aPmnccNoXgkI2ISSVFRTPXyd0mNrY5QjfN6pPrLPzdmQ04 ********* So. This quote basically sums up my life right now, and that of so many families I know (including those who have children with physical disabilities, who are not referred to in the article but who can face similarly shitty support). If you've noticed I haven't been very present or jolly on social media lately, this is why. SEND has taken over everything. I've kept schtum about it here out of fear of being a bore (I feel like Queen Boring rn) and out of respect of those dealing with far more difficult circumstances than me (there's lots of you). But then I saw this article and I felt SEEN and I wanted to share it with people here, and then I accidentally wrote a fucking essay. Whoops. No obligation or expectation to read of course, just (over)sharing my personal experience, because I can. ********** Being a parent to a disabled child is shit. This has nothing (ok, very little) to do with the child themselves, and everything to do with the (archaic, obtuse and very often unjust) systems that are meant to support them. Initially, I was blissfully unaware of the shittiness of SENDland, as I imagine many of you are. But through my own experiences and those of my peers, I began to wise up, working through the seven stages of grief as I went. I have raged about SEND and cried about SEND and lied about SEND ("I'm fine") denied about SEND ("it's fine") and of course stress-eaten my bodyweight in chocolate three times over. Finally, I've reached the acceptance stage. I accept that: 1) SEND is now my life. Being a parent carer is a full-on gig (especially when your kid doesn't have a school to go to 😬) and in the moments I do have to myself there is *always* a tonne of SEND admin that needs doing - research, paperwork (so much paperwork), emails, resources to prepare, professionals to harrang, nervous breakdowns to have etc etc. I've accepted that any chance I ever had of having a sexy career has slipped by the wayside, and supporting my children's needs will be my job for the forseeable. My pay (Carers Allowance) works out at approx 60 pence per hour (the nights I'm on call are unpaid). There are no holidays. I accept that: 2) Skiving is not an option. If I don't do my job, my children will suffer. I've learnt the hard way that the services that 'support' families like mine cannot/will not give us the help we need. This last year I've watched my son's mental health dramatically deteriorate as a direct result of his (considerable and complex) needs not being properly acknowledged or understood or met. I have been the victim of institutional gaslighting, and he has been the victim of institutional discrimination and neglect. Our story is not rare - I personally know at least 10 families who have had similar experiences to ours, and have read many more accounts from the wider SEND community. The reasons behind these repeated systemic failures are up for debate (I'm thinking mostly money plus ableism & structural inequality). What is clear is that the system sees our children as collateral damage, and it's down to the individual families to save them. I also accept that: 3) I have to be hard. Anyone who knows me (ie you) will be well aware I am a giant softie/borderline wuss. I like to think the best of people, want everyone to love me and will do anything to avoid conflict. But there's no place for softies in SENDland. I have to be difficult and demanding and combative. I have to question and call out 'authority figures' and risk not being liked (total nightmare for those of us who experience RSD - if you know you know). I have even had to read THE LAW for gods sake (legally minded pals, I am in awe) to quote liberally in emails with legal threats I can't afford to follow through on. Playing hardball is painful and exhausting and stressful AF (I'm on 4 medications I wasn't on a year ago...) but I have no choice. Waiting politely for help has proven fruitless - in fact it's been harmful. So emotional armour has been donned and softness cast aside. No more nice. I've accepted that to get my child the support he needs and deserves and is LEGALLY ENTITLED TO we're going to have to fight (most likely in court 😬 - this is not uncommon), dropping thousands of pounds in the process (again, this is not uncommon). It will be difficult and expensive and scary, but worth it (hopefully?). *********** I've written way more than I planned to here (it's been cathartic, indulge me!) If you've read all this way, you deserve some cheering. Here are some SEND silver linings for you: SEND SILVER LINING ONE - I'm now so consumed by SENDland shit I've largely lost touch with the shit that's happening globally. As I understand the world is still burning, the pandemic is still raging and the people in charge are still super corrupt, but I don't have the time or emotional energy to engage with the details. This has helped lower my political rage levels no end. SEND SILVER LINING TWO - My kids are brilliant humans and 100% worth wading through bogs of bureaucracy for. SEND SILVER LINING THREE- Aside from the gaslighting and neglect and having to watch your child have a mental breakdown, SENDland can be a pretty great place. I have met a whole host of awesome and accepting peers here who have supported us no end, including Bristol's 14th most cool person Alice Marshment of SEND Advocacy Limited (if you're in England and need help with SEND stuff, check her out, she's a genius); BAPS (chortle) nominees and all round wonderful helpful humans Kate Laine-Toner of Bristol Autism Support and Jade Page of The Autism Page. On top of that there's all the other experts by experience who have shared their intel and insight and/or counselled me through my many SEND panic spirals.