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Day, erm, Almost-the-End: ADD-vance and Not Blaming the Parent

I've just realised how close I am to the end of my 90-day challenge, and would like to write my last few blog posts about the ways that The ADD-vance ADHD and Autism Trust -- the beneficiary of the sponsorship for my challenge -- offers support to families like mine. Because when I first encountered ADD-vance, the idea of self-care was laughable. Did these people not understand that I spent part of my days restraining a violent child and much of the rest of it dealing with wounds or wreckage or the anxieties of two other children? Had they no concept of how hard it is just to get three SEN kids into clothes every morning when two are dyspraxic and one spends the larger part of his life upside-down or in mid-air? Did they not know that I had zero seconds to myself, and that even when the kids were in class, I was in meetings at school or on the phone trying to persuade local services to offer us some 'service'?

Turns out they did get all that. That they had all gone through it themselves, and were still going through it. That they had learned the hard way that you can't be strong enough to put the many support strategies into place at home if you haven't eaten properly for three years and are so depressed that you don't care if you wear the same pair of supermarket jeans until you can't hide the rubbed-through inner-thigh holes any more. But they also understood that once you get some basic strategies in place, things will get easier and you might be able to force ten-minute gaps for relaxation or even - dare I say it - pleasure into your day, on top of the time you take to eat, wash and sometimes, thanks to melatonin (a sleep hormone in tablet form), to get a few hours' sleep. We have up times and down times with the kids' needs, and they have an annoying habit of tag-teaming their crises, so that there's never an entirely dull moment, but I am forcing self-care into my life. I'd given up on that before I met the good people of ADD-vance. I was steadfastly martyring myself and waiting for the Melatonin O'Clock every evening. But frankly, these nutters wouldn't shut up about looking after ourselves, so eventually I thought I might give it a go, even if only to prove that it wasn't possible. Once I was back into the habits of eating, sleeping and washing, I thought that was the most I could justify in terms of self-care, along with maybe the odd coffee with SEN Mums, because, after all, that was a cheap form of therapy. That level of no-longer-being-a-non-person already felt a bit self-indulgent, but then events around me spurred me on to really push the limits and challenge the very foundation of my okay-ish-ness: as you all know, I vowed not to drink (alcohol, including even Pimms) for 90 days. That, surely, could never work.

But it has. I'm not over the finishing line yet, but so far, it has worked. I've been doing it, and seeing all kinds of new possiblities for SEN Mum Life as a result.

So what was the first way they helped me? My first contact was through a free (yes FREE) 6-week course specifically for SEN parents.

When you are trying to get a diagnosis for your child, or even advice on behaviour that you just don't understand and/or find hard to control, it feels as if the NHS will do all in their power to make you Go Away. One terrible part of this process is parent-blaming, which takes the form of advice about 'boundaries' and referrals being rejected until you have attended a series of parenting courses. No matter that you may have an older or younger child who displays none of the same behaviours, or that you sought advice because your two-year-old can neither walk nor speak clearly. You just need to go on a bog-standard parenting course about 'boundaries', or try the Super-Nanny approach. 'Have you tried the Naughty Step?' 'How about a reward chart?'  'Children need consistency, and boundaries.' AAAARRRRGGGHHHHH!!!! I can no longer hear the word 'boundary' without wanting to take a spiked boundary post and cause bodily harm. And if it's not boundaries, it's probably that you feed them too much sugar, even if the child in question doesn't like sweets and will only eat salmon, apples, plain pasta or baked beans. Ever. Sum total of nutrition. (But are they reduced-sugar baked beans, they ask?) The Dog's ADHD diagnosis took a couple of terrifying, violent, heart-breaking years, which caused immeasurable damage to our entire family. We each have our physical scars, but we have also cost the NHS a fortune in individual and family therapy as a result, not just for Mum and The Cyclist, but for the kids, especially The Big Boy. The Dog was referred several times to CAMHS, who deal with children's ADHD, but until we paid for a private diagnosis and submitted the report to the NHS, the closest we'd been to a professional was a phone call from a non-medical member of the local referral service (SPA, or Single Point of Access). This person rang in the middle of a weekend afternoon and asked my husband a few odd questions while he was trying to help me get the children into the car, then concluded by saying that we should attend a parenting course and that our son did not fit the criteria to be seen. Single Point of Non-Bloody-Access, then. Single Point of Blame the Parent. I will never forgive a system that couldn't find a qualified individual with ten minutes to meet my son before rejecting the views of teachers, parents, a Family Support Worker and a GP who knew him. Far easier to send us on 'a parenting course' that we were supposed to find on our own -- 'The Children's Centres run them, so call them' -- and in spite of the fact that we were able to list at least four courses I'd attended which were of little relevance to a child who could neither express emotions nor control his impulses. Again, it's clearly just Bad Parenting.

Of course if you're not a hopeless parent, you'll be one of those 'hysterical women'. The Cat displayed symptoms of autism from birth and his school called me a week after he had started Reception to express concerns.  He had already been attending Speech and Language Therapy and his therapy assistant had concluded that 'broader issues' might be causing his speech delays and difficulties. Guess what the GP said? 'There isn't a problem here. It's possible that he's right-handed and left-footed. I'll refer him if your school is insisting on it, but I don't think there's much point.' Once The Cat reached the paediatrician, he was diagnosed within a few months, at only his second appointment, which is about five or six times quicker than average for our county and suggests there was zero doubt as to his condition. Meanwhile, The Big Boy had been diagnosed with Developmental Co-ordination Disorder (Dyspraxia) and his anxiety had been noted, but we'd then been discharged from the most relevant services, as 'it was too late to change anything about his pen grip or cutting skills, and his gross motor skills were okay'. (I have to say here that I adore our local OT, and she has done wonders for The Cat, but the service is pushed to the limit and they just can't fund help for kids who have found their own [albeit awkward] ways to get by.) When The Cat was diagnosed with Autism Spectrum Disorder, I had no idea that anything other than Rainman or severe autism existed along the spectrum. As I fought through my grief, total lack of understanding and sense of despair to start reading books about spectrum conditions, it dawned on me that there was a reason The Cat's early years reminded me so much of The Big Boy's early years. It wasn't that they were both normal because they were the same, so surely all little boys were like that and the doctors must be wrong about autism; it was that they were both autistic, despite the fact that they were developing quite different 'versions' of autism as they grew older. It took many more months and a valiant fight by our Family Support Worker (funded by our wonderful, wonderful Infants School) before we saw The Big Boy's paediatrician again. She had already told me that she didn't like to 'label' children. My view was that without the 'label', or, as some like to call it, the 'diagnosis', we weren't able to access the support my son so clearly needed. Anyway, by the time we were seen, I knew the diagnostic criteria off by heart and had put together a 24-page type-written document tracing the 'quirks' in his developmental history and current behaviours, skill sets and personality, along with reports from his teachers and SENCO. I submitted all this material in advance, and we were diagnosed on the day, mercifully dodging the two-year wait for the full ADOS (diagnostic screening tests) and having a lengthy but instant set of tests instead. Again, though, I was asked repeatedly why I hadn't provided the information earlier. But how do you know what a paediatrician might need to know if they don't ask you incredibly specific questions? If you only know your child is struggling and seems quirky, but you have no idea that autism might be a possibility? If the questions seem mostly to point to Dyspraxia and your nephew already has this diagnosis, so that is what you - and probably the doctor - are expecting? If this is your eldest child and you have no point of reference? If the only child in your family who doesn't arrange their cars in rainbow-colour order and have endless rituals is the one you know has a definite problem because he keeps biting you and attacking people with heavy objects? Surely The Big Boy and The Cat were normal and The Dog, in his desperately sad minority, was the odd one out? Bloody Useless Parenting, of course. Mum, you suck.

(I'm sorry about my language. I am too, too angry to stop myself, and I am, after all, a New Zealander. They even swear on the TV News over there.)

So when my friend told me about ADD-vance and gave me a flier for their parenting course, I'm not sure I would have followed it up if she hadn't sworn that this wasn't like any other course and that it would change my life. That these people understood that the 'standard' stuff didn't work on all kids, even if you were 100% consistent, and that they would offer an enormous range of alternative strategies. That everyone in the room would understand my situation, and that this was the way to get help. I am going to have to write another blog about the course to explain the impact it had on me, and has had on parents across Hertfordshire, but here I just need to say that everything my friend said was true. By the time the two course facilitators had introduced themselves, I had tears of relief running down my face. They 'got it'. One of them had three SEN sons, and they were older, and she and her sons had survived. None of her children were in jail and nor was she. She could even speak in complete sentences. The other facilitator opened by saying, slowly and clearly, 'Your kids will be okay.' And when it got to my turn for introductions, I revealed my shameful secrets: I spoke about the scars on all our bodies that I, as Mum, had not been able to prevent, and the fact that that very morning I'd been hit over the head with a chair by a superhumanly strong 4-year-old who was enraged because I'd asked him to put on his shoes. And that between his rages he was cuddly and clever and beautiful, but totally exhausting and confounding, and I said that I'd been on endless courses and Nothing Worked. And those wonderful, kind and beautiful souls who were running the course, and every other Mum in the room, just nodded with understanding and sympathy, and not a single person gasped in shock. Nobody mentioned boundaries or consistency or cast judgement.

I drove home feeling just the slightest stirring of hope, and wondering if finally I was Home.



Please help more families to access free courses with ADD-vance by sponsoring my '90 days dry' at this link:
http://uk.virginmoneygiving.com/LizThompson


Comments

  1. It means so much to be among others who understand, doesn't it? The relief is huge :)

    ReplyDelete
    Replies
    1. It means EVERYTHING. And with that need met, I can be a better friend to my other friends - the non-SEN-Parents - because I’m no longer in freefall. I have some of the best non-SEN-world friends a person could wish for, and I need both ‘tribes’ in my life to keep me whole.

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