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After the End: ADD-vance, Honesty and Community

So last Friday was the 1st of December, marking the end of my 90-day drought, and I may have had a drink or two to celebrate! A few friends from ADD-vance came over, and a lovely lady with a big bag of skincare products. (Laura from Arbonne, if you’re interested! Very lovely indeed and another who has used ADD-vance services.) With my kids duly threatened and bribed, I had the kind of chatty evening-at-home-with-friends-and-make-up-and-wine that I haven’t had since, well, the early 90s. If you take out the girlie pampering bit, I need only track back seventeen years to August 2000, when my husband was away for his Stag Do and a select group of friends came for an all-female slightly tipsy sleepover. Either way, I was overdue a girls’ night at home.

The 90 days of my challenge have flown by, especially the last week. There’s so much still to say about ADD-vance, about self-care and about the mind-shift I’ve experienced just by making one small change to my lifestyle.

What I have realised is that for any adult, and super-especially an adult with a caring role, it’s pretty hard to avoid losing yourself, temporarily or longer-term. We might feel lost or invisible or, in more serious cases, be utterly, utterly broken. I’ve felt too broken to function a few times in my life, not just after I had kids or after my kids were diagnosed. Pain is not exclusive to parents or to adults, of course, and for every parenting challenge I’ve faced, I remain thankful that I have these boys and am fully aware of the pain of not having a child, losing a child, or being the child who is overwhelmed. I have seen the pain of somebody who decided not even to exist any more, at too young an age, and have shared pain of the him-shaped hole in the world with many, many others he left behind. None of that, thankfully, was to do with parenting, or even really with being an adult. All that said, being a broken parent brings a whole new level of guilt and fear and confusion, especially if your child has any Additional Needs that make them rely on you even more heavily for their physical or emotional well-being.

So what helps? Sleep, sometimes medication, healthy eating and exercise, not being constantly hungover, but most of all for me, honesty and community. And these I found when my circumstances took me to ADD-vance.

I am going to need more than just this blog post to say what I need to say, but I'd like to share a few reflections on the role of honesty in my first few years of life in SEN-Land and in my battles to come back from feeling scarily broken. This is a pretty terrifying post to write, and it may make uncomfortably honest reading for many of you. I'm taking the leap beyond discomfort, though, and I hope you can also let go of whatever makes you feel uncomfortable about honesty, whether mine or your own. Why? Because only through openness and honesty will you find the community of people who are like you, and can help you.

(I should probably put a disclaimer in here to say that I am writing about a period of my life that lurched from chaos to darkness and back again, so I may have remembered things in slightly the wrong order. This is, though, how I remember it in hindsight, without being able to - or having the energy to - check any facts!)

So, here goes. Just a few of my more memorable ups and downs with honesty, on the long journey to ADD-vance.

Postnatal Depression
It took me a long time to tell anyone how hard things were with my kids, because I was convinced that Everything was My Fault for not being a consistent and energised parent from the moment the boys were born. I realise now that I had Postnatal Depression after both pregnancies: fairly mildly after The Big Boy, but more severely and for longer with the twins, as is fairly usual with twin mothers. (If you are pregnant with twins, do not read the stats! Do, however, move next door to your mother and hire a night nurse, cleaner, financial advisor and PA before the babies arrive!!) I plucked up the courage to ask my Health Visitor if she thought I needed help after the first pregnancy, and was told to use controlled crying so that I could get more sleep, because I was clearly over-tired rather than depressed. Controlled crying - leaving the baby wailing alone for increasingly long intervals - doesn't work on a child with severe reflux, ASD and SPD, it turns out, so I was gifted a further failure for my growing list. When, a couple of years later, I was caring for newborn twins and a toddler, which involved breast-feeding for 17 hours a day, my Health Visitor suggested regular 'Me Time' - 'just half an hour or so to go for a walk'. The twins were about a week old and my back (and various other bits) were so damaged from pregnancy and birth that I couldn't even walk to the end of the garden. She was adamant, however, that this was the best solution and that she wouldn't offer any more concrete strategies for surviving newborn twins until I'd followed her 'Me Time' advice . When I called the NCT, they suggested expressing more milk, and also that I shouldn't be talking on the phone while a baby was crying in the background, despite the fact that I was partly calling about the baby who cried constantly whether held or put down. There was literally no time in the day to call them without a crying baby or toddler somewhere in the house, so I guess I shouldn't have called at all. I got the message loud and clear that I was a failure and that it wasn't a good idea to tell the truth about anything to do with my parenting. So, in summary, I'd tried honesty, but the people I approached were clearly not the ones who could help me. I didn't belong in the local parenting community.

School
When The Cat and The Dog started Infants School and The Big Boy started Juniors, things were at their worst, but I was terrified to tell anyone how bad life was at home, because then they'd know how useless I was. The Big Boy was a dream child at school, obsessed with following rules and very clever, if socially awkward and terribly clumsy, so I felt as if nobody had clocked me as Failure Mum just yet and I should keep going with the act. Eventually I had to talk to the teachers, though, because after one particularly eventful weekend The Big Boy went into school (on PE day!) with teeth marks in his back from The Dog, a huge bruise on his cheekbone from misjudging a distance (hello, Dyspraxia!) and consequently running at full tilt into a brick wall at an indoor football party, and then a slash mark across his face from a piece of Lego and a further encounter with The Dog. I knew that if I didn't talk to both the Junior and the Infants Schools, they would probably have to make some kind of safeguarding report. The truth was that I didn't have a clue how to help The Dog at this stage, because I was so sure that my inability to discipline him was to do with my failings in his 'bonding years'. The discipline that worked a charm on The Big Boy was entirely ineffective with The Dog, so it must be because I was never meant to have three children and was not Good Enough to cope. And now I was going to be forced to come clean with school and I was terrified and ashamed. You know what? The SENCO at the Infants School was amazing, and I well up with gratitude just thinking of her. She began making calls and put the support in place that later led to diagnosis and support. Thank goodness I'd spoken to her though, as soon after our initial conversations, there was an incident where The Dog threatened a classmate across the dinner table with his knife. (Why? Because this boy had called him a 'baby' for eating peas with a spoon. Let the floor swallow me now.) Every SEN parent dreads the moment that 'School' pops up as an incoming call, but the message wasn't, as it could so easily have been, 'We have no choice but to exclude him', but rather, 'What on earth are we going to do to get you all some help?'. I know that not every parent is as lucky as I was with this SENCO, but I realised that if I hadn't finally been honest, we might have seen a very different outcome for The Dog.

Seeing the GP
This small glimmer of 'hope from honesty' propelled me into further action. The feeling that I failed my children had become so severe that I hated myself every single day and every time I looked at my kids I felt they were losing out by having me as a Mum. Buoyed up by the supportive response from school, I decided I had to speak to a GP about my exhaustion and state of mind, purely for the sake of my beautiful boys. I had spent the time from their birth somehow hoping that a Proper Mother would magically take them away, but by the time the boys were at school I had come to realise that they only had me, so now I resolved that I'd better get sorted. I did love them, but I couldn't separate that love from the sense of failure I felt. But the love component of my 'failure-guilt-love' and the boost of understanding made me brave enough to ask for help once more. These kids deserved a better version of me. The GP I saw was wonderful: kind and sympathetic and even reassuringly funny. She identified pretty much every symptom of Depression and Anxiety in me and told me that I absolutely needed help. Very few (if any) people knew of this GP visit at the time it happened, because I was brought up to be ashamed of such 'weakness'. If Shame were a medical condition, I would have had the diagnosis in the bag. Shame aside, the GP (a fellow Mum who 'got it') put in place a 'scaffolding' to help me through my hardest time. I got lucky with the honesty again, and help came as a result.

Being dismissed
I've lost track of the exact timeline, but there was also a pretty significant blip in my 'honesty is okay' process. At around that time a much earlier paediatric referral for the Big Boy came through. I was asked, in front of him, about PND and about his family life, and despite feeling incredibly awkward, thought honesty the best policy. I couldn't have lied, actually, but as with many later situations, there was a conclusion that although DCD (Developmental Co-ordination Disorder/Dyspraxia) was fairly evident, any further quirks or difficulties were quite possibly related to 'attachment issues'. That's all to do with 'bonding', people, if you haven't heard the term, and it tends to go wrong if a Mum is wretched, unsupported and dealing with PND. So that attempt at honesty brought me more self-blame and zero advice on how to put things right retrospectively. (For what it's worth, I believe that The Big Boy, has minimal, if any, attachment disorder. There could be discussion around the twins, but The Big Boy is different.) The experience of 'other issues' spotted by myself and school being dismissed so, well, dismissively, also made me feel like a sick fantasist for imagining there might be some supportable 'condition' going on with any of my kids. It was clearly time to go back to pretending I was doing things right and not admitting what was happening in our home. Have I ever felt more alone? I don't think so.

ADD-vance
But then came The Cat's diagnosis and my first experience of ADD-vance. Honesty was back on the table. I had to tell school about the diagnosis, and chose to tell family and friends, and, if the opportunity arose, other school parents. And I've already written about the relief of being able to be absolutely honest at the ADD-vance course, and my delight in listening to the course facilitators being absolutely honest about their experiences. To look around the room at other parents and hear them say that sometimes they also felt hopeless, while all the while I thought they were awesome, was a real eye-opener. Over the six weeks of the course, I keep revealing things about myself and my kids that felt like deeper and deeper secrets, waiting for the moment when everyone in the room would look horrified and confirm that I was A Terrible Person. There was a certain level of shock and sympathy at some of the events I described, but also some nods of recognition and absolutely zero judgement. Ever. And there was advice that actually seemed worth following -- strategies that weren't straight from Supernanny and didn't seem doomed to failure.

And so I discovered a new community, and that is the magic of ADD-vance. If you find a place where you can be open and honest, and nobody is shocked, and they are open and honest right back at you and the things the people say are resonating with you, you are in the right place. I had my 'old friend' communities and 'publishing' communities and so on, but there was a glaring need for me to find a community where I could talk about this new world I had entered and how it made me feel and how desperate I was to support my kids and to get workable practical advice and learn from the experience of other SEN parents. Without that I felt alone, even with some of the best and kindest possible 'non-SEN' friends in my corner, making huge efforts to understand and support me. I fear that through my confusion and guilt over 'needing something else', I was also losing the parts of me that the older friends had always valued. We can give so much more when we are ourselves supported in all the ways we need, and it's a change I feel very keenly since I've got to know the members of ADD-vance. Rather than losing touch with all 'non-SEN' people, as the newly married might lose touch with the singletons, or the new parents with the childless, I feel that I've become a better, stronger support to my oldest and dearest friends. If Red Bull gives you wings, Community gives you jet engines.

In my first ever attempt to plan, I know that my next post will be about the many forms of community created by ADD-vance. It may turn out to be my last '90 day' blog post, but it will not be the end of my blogging. It has been really satisfying to share this blog with all my friends, among so many different communities or 'tribes', and to start to feel my worlds overlap. I've been reminded anew that we all struggle sometimes, no matter what our circumstances or what the specific nature of our challenges may be. We need to come together to build a 'self-care community' and to acknowledge that self-care is not selfish, but necessary and actually a way of giving our best selves back to others. Self-care also involves getting stuff done and being honest with ourselves and making connections with others, not just lighting a scented candle or having a cup of tea - although there are definitely days where those small acts are a huge victory, and where hanging on to the last shreds of sanity and making it into bed at night are reason enough to celebrate. (When the twins were tiny, I used to chant 'fed and alive' to myself, over and over, to remind myself that I was at least achieving the basics. That mantra was all the self-care I could manage, but I hung on tight to it and it was enough to get me through!)

And so I'm going to keep on attempting to make self-care a habit, in more ways than just cutting back on Pimms, and for more than 90 days, and I'm going to keep on blogging about it. Hopefully by the time I blog again here, I'll have set up the future blog and figured out what on earth I'm doing! (No promises there, but I'll try...)


Meanwhile, there is still time to support ADD-vance, who inspired me to go on this quest to pull myself out of a pit of self-neglect and figure out how to be a person in my own right as well as fighting for and hanging out with my kids! My sponsorship link is:
http:\\uk.virginmoneygiving.com/LizThompson

Comments

  1. You are an amazing mum, and you are doing an amazing job. The boys are lucky to have you :) And I'm glad you will continue with your wise words! x

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