Sunday, April 29, 2012

And a Jolly Good Time Was Had By All

I am always terrified in the run-up to birthday parties. I worry about whether I have cooked enough food: whether anyone will turn up: and how much damage will be caused to the guests by our annual tradition of the pinata. Today I worried about all three. Yes, my eldest turned seven in January, but at the time we only knew our GP and an estate agent, and even I could not think of a way in which I could persuade him that either were suitable party guests. We therefore promised that he'd have a party when we were more settled and he "had friends." A week ago, I sent out invitations - to the whole class, all 25 of them, his friendships are quite tenuous and changeable so I decided to cast the net as widely as possible - and then spent six and a half days in growing, anxious horror, as I realised that we had only one reply. A friend reassured me that this was normal, that New Zealand parents are terrible at RSVPs, but I struggled to contain my terror that we would have no one, no one at all, to fill the large softplay room that the local disability trust centre had offered us free of charge. I mean, he loves his siblings, but not THAT much.

When we got there my apprehension increased. The room was empty except for a large play parachute on the floor. We unlocked the kitchen, then went back to the car to start fetching stuff inside. When we returned, there were three kids in wheelchairs with head and arm support, clearly quadraplegic. They were about to start having fun with the parachutes. "Aargh," said one of their carers, "have you booked this room?" I confirmed that we had. "Never mind," she said, gathering up the parachute determinedly and wheeling her charge out. "We can do something else." "We'll be out by one," I said forlornly to their retreating backs. Way to go, Mum. Stop the quadraplegic kids using this space so your perfectly able-bodied children can run around instead. As if I didn't have enough complexes around the "are they really disabled enough that we deserve this support" theme already.

But then things improved. People started turning up. We had a decent showing from school - eight or nine children, which was a relief and stopped my growing panic that he was being shunned by his peers. We also had several mums who I knew independently, who brought a selection of tots: everyone from a breastfed newborn to a rather cool twelve-year-old who hung out by the table football and pretended he didn't want any cake. There was - just - enough food to go around. And I felt a huge sense of satisfaction as I looked at the happy chaos - there were several kids there with developmental "isshoes" and it felt wonderful that they were all able to be together having fun.

I have always been the sort of parent who preferred home-based parties: not just for the significant financial saving, but because I think it is nice to teach children the traditional party games, pass the parcel, dead lions, that kind of thing. But actually, looking at the group today, that wouldn't have worked so well. Softplay and trampolines was easier, all the different ages and abilities could muck in together. I felt deeply grateful to the Trust for letting us have the opportunity to use the space. I also stopped worrying about the wheelchair-using kids we'd displaced. These kids, too, I thought, looking at the crowded hall, need entertainment, and some of these kids would not have managed as well if we'd done a structured party at home. The softplay hall wasn't just about an easier time for the parents, in this case it was about inclusion.

So a successful party all round, then. And no one lost an eye on the pinata. Given the way they were waving those sticks around, I'm still quite surprised about that.

Thursday, April 26, 2012

ANZAC Day

I have never felt quite as dislocated as this week. There were several reasons for this. One was that New Zealand equivalent of Remembrance Sunday occurs in the bright sunshine of an April day (I am still in my flipflops: five months and counting since I landed: my feet will have forgotten how it feels to have socks on, rather as I have forgotten how it is to have a whole week without any medical appointments for my boys). It is weird to remember the fallen soldiers in sunny weather. You lose the sense of forlorn cold empathy as you shiver through a wet and windy Memorial service in November Britain, the cold freezing your bones so that you end up thinking that perhaps being blown to bits wasn't all bad if it meant you didn't have to live through another European winter. Another reason is that ANZAC day is very much about the past - about the wars that are finished and done with. Whereas the UK Remembrance Sunday services tend to be much more immediate, with the lists of soldiers dying in Iraq and Afghanistan on everyone's mind. Strange, too, was the announcement by the Royal Servicemen's Association that they needed more veterans to support, they had plenty of money left and not enough wounded soldiers to give it to. I don't quite know what they were expecting in response to this complaint. Perhaps a dutiful invasion of Australia or Indonesia to ensure the supply of wounded-and-disabled-for-life was kept to a respectable high? By contrast, in the UK fundraising for our many injured and undersupported young soldiers is ongoing, an all-year-round affair. You can't go to the pub or a rugby league match without being asked to put your hands in your pockets for better wheelchairs and prosthetic limbs than the NHS is likely to provide to anyone, ever.

Before I had a disabled child I didn't really see why charities for disabled children and ex-servicepeople were needed. Because surely that was what the NHS was for? Feel free to laugh hollowly at my naivety. Before I had a disabled child I also thought that stuff like a broken leg was a big deal, and wondered how I would cope if it happened to my child. This week, when my youngest fell off a ladder and we limped into the Kiwi equivalent of Casualty for an X-ray (shamefacedly, several hours later) I realised how totally unbothered I was. It's a leg. It's not a bad break. It's going to get better, and in the interim he isn't in too much pain or discomfort. There is a clear and sensible treatment path and even more importantly there is no real uncertainty about the outcome. As opposed to, well, all the other stuff, where you worry and agonise and angst and THINK about it all the time, because there is no real certainty, no clearly defined treatment programme, and certainly no cure.

Anyway, because it was ANZAC day I ended up chatting over the fence to our lovely next door neighbour about biscuits. How you made them, how long they kept, that sort of stuff. I think it unlikely that our family will be in a position to test the claim that they survived transportation to Europe in WW1, in fact we'll be lucky if they last the week. From there we moved seamlessly to schools, and kindies. To my surprise she told me that they were having a problem with her kid's teacher at our school. Kid has attention deficit difficulties, that kinda stuff. I was astonished, because the school have seemed so good to me. The Principal was good, she agreed. It was just this one teacher, who kept saying the boy was doing fine. I couldn't quite make out what the problem was for a bit, and then she said "I mean, we're not that dark, but - you know, there isn't THAT much Maori in us -" I must have still looked blank because she explained, that she and the other Maori mums in the school were finding this teacher very patronising, dismissive and racist, patronising to the parents and dismissive of their "dark" kids.

I was shocked, and appalled, and profoundly relieved that she had told me. On an entirely selfish level I thought "Thank goodness I know that." Because, of course, if someone is prejudiced in one way they will be prejudiced in another. I can almost guarantee that this teacher will be rubbish at dealing with Special Needs kids too.

ANZAC Day. To rememer the fallen, yes, but also look anew at the casualties of today.

Thursday, April 19, 2012

The penny drops

Picking up my eldest from rugby practice - I'd dropped him with his dad an hour earlier. At the time there had been plenty of space to park, (parks, as they say here, just not the green and leafy kind) but when I came back there were no spaces. All three of the disabled spaces were full.
Sigh.
So I parked one man in to see what would happen next. It was a truck, a huge one, and when he came back a moment later I said "Hi, can I just check if you need this space?" He looked baffled and said "But I'm just picking up my son." I nodded and showed him my badge, the penny dropped and he said, "Oh, I see...sorry." And he drove off.
End of conversation, and I thought no more about it. But what happened next wasn't routine. Because he saw me a few minutes later, and I realised that he hadn't just gone home, he'd moved the truck so that I could get in. I smiled - we were a few metres apart - and he came up and said again "Look I just want to say, I'm really sorry." "Look," I said, "please don't worry about it. You probably don't expect many disabled people at a rugby practice." He agreed that he didn't, and we moved on.

I like it when people I have mentally dismissed as selfish unthinking idiots turn out to be actually very nice and have a conscience after all.

Tuesday, April 17, 2012

It's not a good sign when your kids are too disruptive for a disabled drama class...

I had been wondering what to do with my boys this holidays. There's the zoo, but that's a bit pricey. Then I got a flyer through the post about a local organisation that that does a drama class for disabled children. Hooray, I thought. We'll fit right in and it's free. So I felt quite bright-eyed and bushy-tailed as I unloaded my tribe from the car. A drama class, carers present, siblings welcome. How hard could that be?
We went into the room. Other children arrived, and I felt a little nervous: they were all much more visibly disabled than my brood (in the area of learning difficulties, not physically). I feel out of place, slightly a charlatan. We all get into a circle to start. I realise that quite a few of the other kids have no language. They are almost all enrolled in the Special School where this course is taking place. The other parents all seem to know each other and are chatting away. I start to worry that they are whispering "What does SHE think she has to worry about?" Oh no, I think, I am going to spend two hours feeling guilty for wasting a precious resource on my not-very-disabled-at-all children. I wonder whether to kick my eldest in the hip so he limps a bit.

The class started: and I noticed with mild concern that my eldest didn't want to stand still. No, he REALLY didn't want to stand still: he was hopping and chattering and spinning and interrupting, totally unable to follow simple instructions and join in the warm-up exercise. Unlike all the other children, who had evidently serious learning difficulties. Hmm, this is a bit embarrassing. I hadn't realised quite how hyper he looks next to other chldren. The teacher is also concerned, because he keeps spinning away and she keeps having to ask him to come back and join in. But I couldn't worry about it for long, because then the group leader asked my middle son what he liked doing best, and he responded to this outrageously insulting and personally threatening question by leaving the circle, running over to me and refusing to take part in anything for the rest of the session. Never mind, I thought, at least the little one is doing fine. Oh, except that now he wants to take everything out of the drawers in the attached kitchen, and he's not stopping, even when I tell him off, redirect and do all the other stuff that is supposed to work with toddlers. I have to lock the door, whilst also holding my my middle son who is in an advanced state of sensory overload, rubbing his head into me and demanding we leave. But I can't give the young ones my whole attention because every now and again I have to shout at my eldest to stop telling the teacher what to do and stop talking over her so that she can run the class. Meanwhile, all the other children do exactly what they are told, calmly and to the best of their ability.

At the end, the other mums gather up their children and leave, giving me sympathetic smiles. The teacher says goodbye to the other children's parents and then says to me "You must be totally exhausted at the end of each day." I nod, faintly, and walk out with a feeling of shame, irrational though it is, that of all the parents present, she singled me out for her sympathy. I should be doing better, I think. Of course, I didn't feel judged. Everyone was lovely, as you would expect in a disabled children's group. But my boys stuck out like a sore thumb, and not in the Oh-Do-They-Really-Have-Any-Issues way. They just couldn't cope with the class format, all in their different ways displaying their stress in difficult behaviours. Everyone else then walks back to their cars calmly, children trotting peaceably beside them. I, by contrast, have to enlist one of the organisers to help me because both my youngest and my middle son are refusing to move, and I can only carry one of them at once. I reel home in a state of shock, trying to deal with the uncomfortable recognition that my bright, high-functioning children are currently the most disruptive kids in a disabled drama class.

So where do I take them so that they will fit in and not cause trouble? Maybe I should go back to Plan A. Stand by for my next post: "Chimpanzees complain about my boys' lack of decorum at the zoo..."

Monday, April 16, 2012

"But we DO have an appointment"

I was not at my best. The youngest had croup the night previously, and had an adrenalin nebuliser administered in our driveway by the ambulance crew, who then whisked us off for a couple of hours' medical observation. These things always happen when you are exhausted, as I was having taken my eldest up our local volcanic island the day previousy. So the next morning, when I saw two smiley ladies arrive unexpectedly on my doorstep, I decided that I was in no mood to deal with Jehovah's Witnesses. I am fed up, I decided, of random people butting into my life. I am going to be grumpy today.
"I only see people with an appointment," I said firmly, as I opened the door. They looked a bit blank. "But we do have an appointment." "Do you?" "We're from the Ministry." "Ohhh," (cringe) "ah, yes, I remember now, do come in." Oh, I remember all right. The appointment I never got around to writing down in my calendar because something else happened. Along with the other important stuff I forget. Like having a life, and not running out of tea.
They come into the chaos that is a house with an exhausted mother and three pyjama-wearing children who have just finished breakfast. They tread gingerly over the cornflakes scattering the floor and try to ignore the blaring telly - Nick Junior, which is the only channel my middle son will tolerate. We spend an uncomfortable hour running through my middle son's needs. They are lovely, and I feel guilty for being so rude initially to them. And then, as they leave, the Continence Nurse arrives. Reminded of my good manners, I greet her warmly like an old friend, and then am taken aback when she makes repeated judgemental remarks about my son's failure to potty-train. (Why exactly did she think he had been referred?) When I asked about the maximum number of allowable nappies she made dark comments about spare nappies ending up on the local auction website Trade Me. Should've been angrier, I thought ruefully. All that wasted niceness.

I've been quiet online this week: mainly because it is the Easter holidays and all my energy is taken up with child-wrangling. I love the school holidays, I adore the sense of being at home with my boys just arranging things that they will enjoy, with no pressure from school or clubs: just time. I could get quite theological about the joy of empty space and time that is our holidays, I wish they were double the length. No, seriously, I do. But let's face it the holidays are also like being put into a wind tunnel and told to keep still. I am, just about, avoiding being blown away by what we affectionately term the boys' Crazy, but there's not much energy left for blogging. All my energies are taken up with being positive and not losing my rag with the boys.

Especially as the youngest has started pulling his own hair out - sigh, needs to be watched and discouraged - the hyposensitivity again - and the middle one, well it looks as if he may be developing a bladder problem that explains why he isn't out of nappies and means that he may be there for some time. The doctor has referred him for assessment. It will, of course, all take time. Time in which I shall worry. But time in which I shall also be devoutly grateful that I have not pushed the potty-training - a child who has a genuine medical issue is very different from a child who isn't ready or can't understand, and I shall be grateful for the rest of my life that I didn't try to force the pace and humiliate or worry a child who was going through quite enough already. And I am furious, absolutely could-rip-their-heads-off furious, with the collection of health professionals with whom I have repeatedly shared my concerns about this issues, none of whom have picked up the really quite obvious signs that there could be a physical problem ther.

This anger is slightly embarrassing. One of the issues that I have been struggling with - and another reason that I haven't been blogging - is that I am so fed up of being so angry. Reading over my posts I have looked with dismay at the number of people who have really, really made me want to punch them, from random passers-by to lovely old ladies who say the wrong thing at a toddler group. I am short-tempered and crabby. Not very Christian and tolerant. This bladder problem gives me a whole new area with which to seethe with wrath at the professionals - because I have been telling doctors and health visitors and everyone that there is a problem for months, if not years, and no one has listened. And it could all actually be quite serious and I don't want to be doom and gloom about this because it probably isn't, but for goodness sake, people, what I was describing could be a possible damage-to-the-kidneys issue.

So anger can be useful. It can spur you on to do great things, argue the case for your child's needs in seemingly hopeless circumstances. In this case it was the anger at our Continence Nurse's condescension towards me - "What - he's not trained AT ALL? He's NEVER out of nappies? At nearly five?" that made me seethe, grumble inwardly, then determinedly start trawling the internet to find answers to the questions that no one else seemed to be asking. Then I found the key indicators that showed a child had an organic medical problem, and lo and behold, my son had all of them. Just like when I diagnosed his verbal dyspraxia online in half an hour, after a year of waiting for the health professionals to do their job.

I was going to write a post about how I had resolved to try to be less angry. But actually, since this happened, I have decided that I will not berate myself for being permanently grumpy with the world: I would obviously like to aspire to greater tolerance and forgiveness of the many people who I wish to shoot dead for saying stupid things about my children: but I will not worry too much that I don't FEEL loving, as long as I am not actually shooting anybody in the head. Because, at the end of the day, anger is a protective instinct, it is about wanting your children to be safe in the world. And if the anger at the Continence Nurse's condescension meant that I finally decided to stop waiting for the medical profession to sort out my son and started to do some reading myself, that has to be a good thing.

Indeed, her very surprise at his delay may in some ways have been quite helpful, since it brought home to me how very delayed he was. So her visit was quite useful really. Although I still think that if she was surprised to find me asking for nappies for a five-year-old she's in the wrong job. Maybe I got it wrong, and she wasn't actually there about the nappies at all: maybe she was indeed a Jehovah's Witness waiting for the right moment to breach the subject of God.

Saturday, April 7, 2012

Ritalin, chocolate and other forbidden medications

It's Easter Sunday here, and I am manfully, or womanfully, trying to forgive and forget in true Christian spirit. There are all sorts of people I need to forgive but let's start with my husband bringing home HomeBrand (unbranded, like Tesco Value) from the supermarket yesterday. To be honest, I am struggling. There is Christian tolerance but there are limits.
We've just had our Easter egg hunt, the annual confirmation that if developmental milestones were measured in ability to hunt down chocolate, our boys would be not just discharged from the paediatrician's care but possibly enrolled in a Gifted and Talented cohort study. There is something wonderful about small nappy-clad children wandering around a garden shouting "Egg! An egg!" and waving sticky, foil-covered fingers at you. Mumsnet, I note, is this year filled with parents insisting that their children only NEED one bite of chocolate, the rest of the Easter spirit joylessly supplied with one knitted egg from Traidcraft or whatever. In further evidence of my Christian backsliding, I believe that Easter is about fun first and restraint second. We supply plentiful eggs in this house, and then if they aren't used up in a few days I make chocolate cornflake crunch with the leftovers. (Again, I realise, it is one of the benefits of children with SN. You stop worrying about the possible moral connotations of too much chocolate and just enjoy the fact that they have ALL understood the idea of finding stuff in the garden, and that no one has wandered in having eaten cat poo by mistake. Although given my husband's clear lack of taste in tea, perhaps I should not be so sanguine, for all I know he might have mistaken weedkiller for chocolate this year).

It's been a complicated week. My eldest had his IEP on Monday - which was a bit alarming, as he has been so happy and settled I was expecting good reports all the way. They were lovely, and all agreed he was lovely - which he is, like a great big cuddly talkative teddybear - but suggested we revisit the whole ADHD question.

This should not have shocked me as much as it did. In realistic terms, I could not have been more prepared. At our last paediatric meeting before leaving England, the paediatrian sighed at the fact he had been discharged from ADHD clinic without diagnosis and asked me please, please, please, to get this reinvestigated when we arrived in New Zealand. So this should have been a gift, but in fact it was a blow in the stomach, because I had been rather hoping we'd dodged that bullet and that his issues had magically improved. (I am not immune from the parental disease of denial). I was astonished at how low I felt. I thought I was past that dreadful diagnosis-shock, I complained to a couple of friends. But of course, as they pointed out, every new diagnosis is about going back to the beginning, revisiting your view of what the child needs and what strategies are going to help.

Which brings me to the big bad elephant in the corner: Ritalin. As it happens, I am pretty sure my son won't need it. He is happy, he is learning, and we are managing him well enough at home. No reason to put him on Ritalin that I can see, and school agree. Diagnosis, if it happens, will be about strategies, support, qualifying him for extra help. But I've been shocked by the number of people who have said to me, as soon as I have mentioned that yet again ADHD is a possible diagnosis "But my God! What are you going to DO? You're not going to medicate! I mean, Ritalin is a DRUG!" as if I had proposed to throw my son off a cliff. Even more judgemental than those who don't want their children having a morsel of Easter chocolate this year.

Ritalin is what it is. We all know it's a drug, it's not ideal, it's the last resort, messing with a young child's brain chemistry at an age when they are unable to give consent, yadayada. But I would do it in a heartbeat if I thought my other children were at risk, his education was being destroyed by his behaviour, or I felt he was not safe to keep at home. I would do it because I believe foster care and illiteracy are known harms. Ritalin is a potential one. As a parent, you have to weigh up the pros and cons. There are of course cons to Ritalin, big ones. I am sure that in the States in particular it is often overprescribed, a first resort rather than a last. Even in the UK, Ritalin is too often prescribed BEFORE the serious behavioural therapy that the National Institute of Clinical Excellence recommends, you know, the type that is underfunded and completely lacking in most areas. So my ideal prescription for these kids would be more behavioural therapy.

But the parents I have known who use it, by and large, aren't idiots. Most have tried other strategies, seen them fail. The doctors who prescribe Ritalin aren't doing it for fun, or because they haven't noticed that it's a drug. They're doing it because they have taken a pragmatic decision that the known harms of violence and despair and failure outweigh the potential harm, longterm, of a still-new drug.

They may be wrong. Who knows? But I am not going to judge any parent who has taken a deep breath and said, at the end of a long battle with the alternatives, "actually, yes, medication may be what my kid needs." The people who "don't believe in ADHD" tend not to know what they are talking about. I know that, because I used to be one of them. Working with American schoolkids as a tourguide, I was horrified to see these really bright kids with a diagnosis. But they were so intelligent, I would say. They were the interesting ones. How could THEY be a problem? Of course, I was childless and cocksure. I didn't have the responsibility of raising them, I didn't see what they were like in the routine of a classroom as opposed to on the European trip of a lifetime. So this possible ADHD diagnosis is a bit like karma, if us Christians believed in karma, or divine judgement, if us Christian liberals believed in God sending us nasty surprises just to give us a fright. I guess what I should call it is "awkward." So you know, I have suspended my previously firm belief that medication was always, in every situation, a bad idea. I have looked at the evidence, of the families I know, and seen the mums at their wits end - often on medication in order to cope - the dads who leave, or take medication in order to cope - the kids who are beaten up, because every single sensible parenting strategy has failed, and even decent parents get to the end of their tether and lash out - and I try to take a rounded view.

And you know what I have learnt, talking to real parents who have used it? Responsible parents don't try Ritalin without having given EVERYTHING else a good shot first. Moreover, many of them don't want to drug their kid indefinitely. Which is great, because for short-term use it can be transformative. Ritalin doesn't have to be a lifetime sentence. From the cases I know, it can be the opposite. It can be about giving a kid a short-term boost, allowing them the breathing space to learn the behavioural strategies to manage longterm. And it can sometimes save a parent's sanity, or a sibling's emotional health, or a marriage. In short, in small doses Ritalin can be a godsend. Like chocolate at Easter.

Of course, some marriage-threatening problems can't be solved by medication. Sadly for our marriage, I know of no pharmaceutical preparation which would cure my husband's taste for revolting tea.