Thursday, June 7, 2012

Enough

I started this blog after a disastrous visit to the library. There have been plenty of those since, but gradually we've got better at it. It's not perfect, but it's improving.
In my mind, I promised that I would keep the blog for six months, then see how I felt. I can report that I feel pretty much as I did when I arrived - it's all so new! so exciting! so much to do! we've hardly started!
but a lot more confident about how the system works and what we can expect in the next few months/years.
There are good days and bad days and absolutely terrifying days, like the day this week when my middle son climbed out of his car seat into the middle of the car and started pummelling his little brother and me...whilst I was driving. There are good moments too, like the bike-riding that my eldest has re-mastered with the help of a local OT, having lost his confidence on two wheels when the bike disappeared into a ship with our luggage for three months.
Most of the time I feel like I am trying to learn to ride a bike too, wobbly and in constant danger of falling over. I still get grumpy with idiotic strangers and unhelpful professionals, like any SN mother. I worry about failing my boys and know that there are dozens of therapies etc out there that would help them that I'm not ready/energetic/loaded enough to try. I am nervous about my middle son's entry into school and worry about whether we will ever get him out of nappies. My eldest is being teased at school, mercifully he is currently oblivious to the fact that it is a problem but he will wake up to it eventually and then we will have to do something about it. My youngest shows all the signs of being intelligent and challenging.
So I could go on writing, but something in me says that I've done enough: enough in the same, imperfect way that I do enough I think for my family: it's not everything it could be, it's not comprehensive or all-encompassing, but it's the best I can manage, and it's good enough for now. Other people might manage more, but this is my best. It's been huge fun to write, and I want to get off the stage whilst I am still enjoying it. Something about not wanting to repeat myself. Besides, I have a thesis that has to be completed by November. Wish me luck. And thank you for reading.

Thursday, May 24, 2012

Rainbow Nation

Winter in Auckland, and the skies are constantly spattered with rainbows. It's a logical consequence of there being loads of rain and sun. Fresh from grey-skied England, the boys and are are stunned by them - "Look, Mum, there! And another! There! Turn round Mum, quickly! You're missing it!" as we drive to school. Sometimes I even manage to keep the car on the road.

I love rainbows because in England they are rare and magical, and because in South Africa they were the symbol of the new nation Mandela tried to build, many-coloured people all coming together. I kind of like the symbolism - all my boys, with different diagnoses, like a rainbow family - and I like the fact that when we are all squeaking about rainbows they are all productively occupied. Specifically, no one is hitting his younger brother, undoing his younger brother's seatbelt, lying down on the back of the car and refusing to sit up or undoing his seat belt and wriggling out of his toddler car seat.

When I described such high-jinks to our occupational therapists, I did so wearily, with no sense that anything could be done about this dangerous state of affairs. They surprised me by saying that they would like to get my boys assessed for specialist car seats. I agreed, but worried about what message it would send the boys. I also wondered if this was really necessary, and whether a better mother would have a magic recipe for good car behaviour (that did not involve beating them around the head, I understand that along with smacking this is illegal here). But a date was arranged, after school one day. Then of course my eldest had his hip episode, and sitting in the car caused him pain, which meant suddenly that this was all extremely important and urgent. So on the appointed day I cheerfully told my eldest when I picked him up that we were off to see some therapists to get him a car seat that wouldn't cause him pain.

Quite understandably, he was furious. He's had a bellyfull of doctors over the past few weeks. His bad mood affected the others in the car, and we howled our way to the appointment. It was like driving three banshees engaging in a banshee-wailing competition. As I drove into the car park, one of them did something he had never done before: he undid his seatbelt, came to the front of the car and started kicking me. Thus proving in one neat moment that the occupational therapists were right, and we did need the escape-proof specialist seats.
This should have reassured me that we were doing the right thing. Instead, it plunged me into a deep pit of despair. I want to be having normal after-school days, I thought. The park, and telly, and activities. Not rushing them off to see yet another medical person for yet more weird and unusual medical equipment. Still, I thought, we'll be out of here quickly. Then the occupational therapist came downstairs and explained that unfortunately the car seat specialist was running late, so we were going to have to wait upstairs. AARGH. Entertain three kids by myself in a strange place with no toys for an unspecified period of time. When they were all already in a bad mood. I felt rather like doing a little banshee-wailing myself.

Only then things suddenly got better. We went upstairs to their offices. There they had an open-plan gym, filled with skittles and beanbags and balls. My eldest's eyes widened. My middle son made straight for the table in the corner, covered with lovely pens and paper. My littlest just wanted to run around and shout. And of course, what I hadn't taken into account was that the two occupational therapists were also waiting with nothing to do, so what they did was start to play with my boys, set up lots of lovely activities for them. We had to wait forty-five minutes during which time they organised a complicated skittles match which my eldest consistently won, found cutting and sticking and glitter activities for my middle one and even persuaded my tiny one to sit down for five minutes with a dinosaur puzzle. The kids lost their grumpiness and had a lot of fun. And I, too, lost my depressed feeling of life all being a bit hard and impossible, the sense that all these meetings and appointments were cutting them and me off from the mainstream of parenting, the just hanging out and having fun. Because here we were, right in the middle of arranging specialist car seats with anti-escape devices and special swivelling seats and footrests to ease joint pain. About as depressing as a routine appointment gets, even before you add in the desperate unhappiness caused by having been attacked in a still-moving car. The stuff of a really dreadful day, in fact. But here they were, laughing and stimulated, getting some quality playtime whilst I - to my delight - could just relax, sit back and enjoy watching them. They giggled, chatted, messed around. In short, they had the kind of afternoon you feel kids OUGHT to be given after school. Oh, and they sat in some car seats when requested, but I don't think they really noticed that much. They were too busy having fun with their new OT friends.

Rainbow living is something I am learning to understand as an intrinsic part of the Special Needs parenting walk. Some of the most beautiful moments are not when you are surrounded by emotional sunshine, without a cloud in the sky. They are in the moment when there is rain, and the patches of sun seem puny and insignificant, until you look up and unexpectedly see the glorious tinges of the spectrum. Nature's stained-glass window, God's promise of new beginnings and better things in the sky. I came home with a quiet sense of thankfulness, for a happy afternoon and children who didn't really care about their new car seats or what journey they were going on, as long as they were having fun along the way. And as we drove home, and the crying started again "because you PROMISED a treat afterwards, Mummy, you PROMISED," I managed to keep hold of my emotions and refrain from either setting up my own banshee-howl or beating anyone around the head.


Saturday, May 19, 2012

"Why doesn't the paracetemol and ibuprofen work any more?"

It was what we British would refer to as "lovely spring weather" - sunny skies, T-shirts and regular showers. I decided that we weren't going to dodge the raindrops in the park, and when we'd picked up my boy from school took the three of them off to McDonalds. They darted through the door and towards the indoor-playground section with shrieks of delight. It was an idyllic moment, if you ignored the elder child holding the younger one down whilst he punched him repeatedly in what they still term in a strong Yorkshire accent to be the "noots."

I separate the warring parties, whilst dealing with the inevitable mother-rush of guilt that they are overhyped, and this is before I have fed them junk food in McDonalds. But then I pull myself up. Truly, I thought, I have many things in life to be thankful for. There is the fact, for example, that modern nappies come with so much front padding. And as well, there is the relief of seeing my eldest jumping around, leaping up and down on the playground just like everyone else, after a week of persistent and severe pain that really, really, frightened us all. I am sharing a bench with another mum. Something I have noticed on arrival in NZ is how friendly and approachable most mums are, you end up chatting to in the park supermarket or by the bouncy castle at Mitre 10. So in that casual striking-up-a-conversation-with-a-fellow-mum-in-the-trenches way, I mention how relieved I feel to see my son walking again, and how much I have to be thankful for this week. She says "uh-hmm," and returns to her book. I peek over her shoulder to see what it is. It's a self-help tract on Positive Thinking and Looking For the Inspirational In EveryDay Life. Well, obviously there's no reason why she would be interested in my story about a small boy learning to walk again, then.

Because I am feeling a bit rubbish and stressed, I take a second peek to see the gist of the book. Wow. Apparently what you need to do to get what you want in life is Make a List of Your Wants and then stop focusing on the fact that you don't have them. You are however allowed to make a list of the conditions in your life that are preventing you achieving them, but then you have to Reject those Conditions and no longer think about them.

I look at the little boys climbing assiduously up the slide, despite my years of religiously inculcating the mantra "up the ladders, down the slide." I open the door to the playarea and use my best childrens-TV-presenter voice: "Superheroes, what do superheroes do? They go up the ladders and down the slide." All the children stop playing and look at me. Then my boys continue to climb up the slide. Sigh. Parenting Fail. My boys are incredibly literal. "No, you are the superheroes," I explain patiently. "I mean you. You can't climb up the slide." They look at me with mystification. Why didn't I just say that then?

I return to my seat and ponder my List of Wants. Well, really I'd like to be a well-respected vicar and write several best-selling plays and novels, with perhaps a few academic tomes under my belt as well. Oh, and to be the kind of parent who does wholesome afterschool activities like mosaic-making and a dinner of homegrown vegetables, rather than McDonalds softplay and the cheap-snacks-menu. And the conditions that I must ignore, that are preventing me achieving all this? I look at the three giggling boys sneaking up the slide in front of me. Hmm. So I need to ignore them, their needs and their behaviour. If I just ignore them then they will stop preventing me achieve what I want. Sure. No problem.

Only - of course - life is never quite as easy as it seems in the self-help books. For example, there are needs that just cannot be ignored, conditions to self-fulfilment that cannot be rejected. I may not be doing what I wanted with my life right now, but if I did so it would be at the expense of others. This is the essential difference between Christianity and the self-help culture: one demands you find yourself, and the other that you stop what you are doing and take the time to help someone else. I have received a huge lesson this week in what it means to be helped. The OT who has bust a gut to start getting us the mobility equipment we need, urgently. The church who gave us a parcel of frozen food, because they didn't think I would have had much time to cook. The friend who has offered to help with childcare one morning a week, so I can get to appointments. Kiwi hospitality at its best. Superheroes of the Spirit. I have been humbled by the open-heartedness of people here.

And such gifts have an educational value, as well as a practical one. They remind me of the importance of caring for others, and the times when caring for others means we put our own needs, desires and dreams aside. I turned down a job a couple of months ago, a creative one I would have enjoyed and was well-qualified for, that would have brought us more money and me some recognition and sense of value outside the home. But I didn't feel I could do it well without bringing less of myself to the home. Longterm of course I want to have a work identity again. But that's self-esteem, self-realisation, self-care. It's not unimportant, but it can wait for now. Because right now there are other people who need me urgently. Specifically, I have a small boy who asked me at bedtime "Why doesn't the paracetemol and ibuprofen work any more?" He needs pain relief urgently, whatever the diagnostic treadmill churns out in due course. One day I shall be able to be theological, put all of these experiences into the elegant thoughtful prose or sermon-speak that I am trained for. I hope to avoid the easy recipes of the self-help books: Christian writing can also be full of pat pseudo-remedies, trite non-solutions. But that can keep. For the time being my creative juices have been bled dry by writing a pleading letter to the head of rheumatology at our local hospital, begging her to ensure my son is assessed soon. I like writing, I like being passionate on paper, but never before have I used that skill for such an important task: my son is hurting, and he needs you to see him quickly, to find out what is wrong and how to stop the pain. I want you to see him so that he can walk easily and confidently, so that he can spend afternoons climbing up the slide and punching his brothers in the nuts. Well, all right, I didn't precisely say THAT.

Saturday, May 12, 2012

"Bugger," said the Principal

She did, honestly. The Principal of my eldest's school. In an email responding to our latest news. You wouldn't get THAT in the UK. Imagine the OFSTED reports. I think you would probably be removed and sent to jail for that. Almost as bad as forging SAT results. But it was just what I needed to hear. Like a shot of whisky, or a nice cup of sugary tea. You don't want it all the time, but it's just right for emergencies.

I am in the Emergency Department of our local hospital, with my eldest, who can't walk. He woke up in pain and unable to move - so far, so normal. Usually I wouldn't bother bringing him into hospital but today it seemed worsening, it didn't ease as the morning went on and anti-inflammatories didn't help. In England we were told that these semi-regular episodes arose from his Perthes hip problem and I saw no reason to quibble. But the thing about emigration is that you don't have your entire computerised medical history with you, nor are you a familiar face at the hospital. I am used to being waved through "Yes, yes, Perthes Disease giving him pain again, home and rest, don't worry, see you again soon, how's the family doing, do you want us to reserve you a chair for the next time it happens?" But here I have to explain everything from the beginning. The doctors confer and come back to me. They don't think England has been handling it right. It looks as if there has been a misdiagnosis of some sort, or at the very least that the hip damage from the Perthes is too mild to be causing this level of pain. We are talking about family history, different treatment pathways. My boy, sitting in his SN buggy, demands "Am I gonna get better and walk again?" Yes, yes, I reassure him, looking out of the window at the glorious view. Across the bay is the volcano summit on which we stood triumphantly together last month. We walked all the way up. He had mild leg cramps, but overcame them and climbed determinedly, declaring as we neared the summit "I want to get to the top even more than I have ever wanted an icecream!" It was one of the happiest mornings of my life. Now I can hardly bear to look at it, wondering if it will be possible again. Bugger, indeed. I search out a cup of tea and drink it gratefully, waiting for happiness to hit. It doesn't. Oh DEAR. Things must be bad. I have another, with sugar. That works a treat.

I am sure that he will walk again, of course, these attacks don't go on forever, but what I don't know is how often these crippling bouts of pain will occur, and whether they are going to get worse. That's the horrible thing, because at least with Perthes Disease there is a clear outcome - your son's hip is damaged, it will improve as he grows, we must just treat him with care to prevent long-term damage until it does so. No reason to worry. So I haven't. But with the New Zealand opinion that this isn't a correct, or at the very least, not a sufficient diagnosis, we are back in terra incognita. As any SN parent will tell you, the pre-diagnosis stage is always the worst, when your mind races with nasty possibilities. Everyone has a unique talent, and mine is to invent the most preposterous scenarios and then find a way to blame myself for them. Whilst we wait forever in the Emergency room, I run the gamut of "and then he will turn out to have that horrible disease where you lose control of everything slowly and it will be MY FAULT because I wasn't grateful enough that he was only mildly affected by his Aspergers so God has sent me a REALLY AWFUL disability to cope with" to "But I can't have a physically disabled child, I know nothing about them. All I know is developmental delay. God must have made a mistake." "This is the direct result of the time I didn't give money to my friend's disabled child's wheelchair appeal." "God doesn't exist, there is no divine justice, and the rabid pink rabbits who run the universe have decided that they don't like me." After a few minutes, I recognise that I am inventing a God of such perversely reasoned nastiness that a rational theology of love could not possibly co-exist with Him - or a rabid pink rabbit - , any more than a skunk can hang out in a perfume factory or my children have a month without a medical or developmental crisis. So I stop inventing ridiculous reasons why this makes "sense" on a cosmic level - because of course it doesn't, illness and disability never does - and promise myself that wait to see what ACTUALLY happens, rather than inventing disasters in my head. I manage this for about five seconds and then burst into tears. Dear me, I need more tea. But I can't get one, because at this moment that the paediatric nurse comes in for a chat.

I have liked her until now. She has been the only member of staff who kept her head when my son demonstrated his pronounced needle phobia. It took three attempts, three doctors and two nurses plus me to hold him down in the end. In between the doctors conferred in the corridor whilst I shouted at them "He is going to go on screaming until you have finished, DO NOT WAIT FOR HIM TO CALM DOWN." The nurse hurried them into action and eventually we managed it with me on the bed, holding his head and trying to remember how he had screamed at the NG tube as a premature baby. It is easier when they are not old enough to shout "Muum! Muum! Stop holding me! Muum!" and you know they won't forget until the next time. But she was sensible and calm, and we got it through to the doctors that there really was no point reasoning with my son, we just had to treat him like a tiny baby and get on with the job.

So I like this nurse. But as we talk I get irritated. She wants to persuade me that my eldest is inventing his symptoms. Yes, OBVIOUSLY, children with Aspergers are brilliant at lying, and it is very likely INDEED that he has spent two years complaining of incapacitating pain that might mean we hold him down to take a blood test. About as likely as the universe really being run by rabid pink rabbits. I struggle to be polite. Eventually she says to me "All right, but then you need to be pushy and start demanding answers. Because this isn't normal. I think juvenile arthritis." And I realise that she has been testing me, making sure that it really ISN'T psychological before she comes out with what she actually thinks. The doctors admit they are baffled. And we are transferred to the local children's specialist hospital for a second opinion.

We go, and spend an uncomfortable night where my boy cries out in pain and the alarms sound everytime I start to sleep. I am surrounded by mothers of recuperating toddlers who are all engaged in a bizarre game of competitive disciplinary parenting. "Sit STILL in your cot," they hiss at the tiny bewildered children in a strange environment. By contrast, I can't be bothered to tell my son off when he is rude to me. He's had no sleep, he can't walk, he might as well ease the frustration by snapping at his mother. This raises eyebrows. "Oh I use Time Out, it ALWAYS works," said one of them to me pointedly. She has long blonde hair like a Disney Princess. I hate her. I tell her that my middle son can't bear time out and that all specialist and mainstream disciplinary strategies so far have failed. She looks at me as if I am talking a foreign language, which I guess in a sense I am. She explains how all her four young children are beautifully behaved. Then I hear her hissing to her husband on the phone "Then he must be PUNISHED! No treats today!" Her face is contorted, like an Ugly Sister. Heh heh. Time out not working so well then after all.

We go home, clutching our referral letters. He's walking again now, although still in some pain. I think about the wonderful walk up the volcano. It wasn't all easy, it was tough at points for him and for me. But the peak moment of arriving at the top was so wonderful, so joyous, it made sense of all the rest. That is the kind of challenge I like, not this guessing game. I think of a conversation that I had with friends recently, about not wanting to read upsetting highbrow literature. Well, yes, I think, I don't need to disappear into fiction to traverse harrowing emotional territory. I want escapism and happy endings. Right now my life is scary enough. Fiction needs to be reassuring, like that sugary cup of tea I had in the Emergency Department.

You fight your own fears, at times like this. The same as when my boy and I scrambled up the mountain. That moment when he complained of leg pain and said he couldn't go on. "Please try," I said, thinking of the complexities of arranging this magical day, "we can't come back and do it again." He walked for another few paces and the pain eased. "I am racing myself," he said later, "I have left a bit of me behind, down there, where I said I couldn't do it. That bit I have left behind." As we leave the hospital, I try to leave behind the emotional shock with the same determination that my little one showed, climbing up that volcano. Worries about Rabid Pink Rabbits and diagnoses will keep. There are practical things I must do. He is starting to get embarrassed at being transported in an SN buggy, so I write to our OT to ask for a referral to wheelchair services. I contact family to try to get precise details of diagnoses, gene markers, etc. My boy is brave and sensible and delighted to be walking again. I haven't told him that he will need another blood test this week. Bugger.

I am not going to be back in fulltime ministry for a few years. I agreed when I met with the church here last week that my family life was just too demanding for anything else right now, and the rest would have to wait. But when eventually God willing I do, I want to be the kind of priest who says "Bugger" to a family in crisis, not to make a point about how cool I am but because it is the right word to use at the time. I shall remember when I see mothers not disciplining their children in public that they might be doing the right thing, because their child is in pain and has had no sleep. I shall remind myself that no matter how stressed I feel it is not wise to ascribe events on earth to the Infernal Plans of Divine Rabid Pink Rabbits. And I shall also remember - as if I really needed reminding - how emergencies can feel an awful lot easier to handle by the production of a nice, strong, sugary cup of tea.

Wednesday, May 9, 2012

The Darkest Hour

"Child Youth And Family Services? Really? I thought they were only for cases of domestic violence or the children being at risk," said the visiting therapist.

"CYFS? Oh my goodness, I didn't realise things were that bad," said the second visiting therapist an hour later (this is why I never get to go to toddler groups: we have had so many health professionals visiting I am thinking of applying for funding for a revolving door. Except that getting the funding would involve having to have more meetings). "Oh dear, you see, we have a social worker attached to our development centre, she is usually the first port of call for families in need, we only refer on to CYFS if this is all beyond her, if they are involved she'd better be involved too." More forms and meetings. Fantastic. JUST what I need.

But I didn't think we were in need, or that serious an emergency. It was all a bit bewildering. I'd asked to be referred to Marinoto (Child Mental Health Services) after one of the kids did something alarming and dangerous. But you know, they're my kids, they do crazy things. I am used to that. The clinic had suggested CYFS, with a preamble about how it meant support for the family not a child protection concern. So I said "fine." This was because I have a "suck-it-and-see" approach to family support services ("Are you actually an organisation that promotes Child Neglect and/or Murder of the Innocents? No, OK then, come in." "You DO promote Murder of the Innocents? Well, some days I feel that way too, you might as well have a cuppa and we'll see what else you can offer us, if there's respite involved we might negotiate on the murder thing...can you do it without wasting my time with more meetings?")

But the universal shock from others made me feel that perhaps it was a huge and drastic step, perhaps everything was much worse than I thought. A big black cloud descended over me and I felt dreadful for a couple of days: for the first time ever, I think, I woke up in the morning thinking "I really can't handle my children today, I don't want to get out of bed."
Obviously this is NOT GOOD. I was alarmed by it, because basically, having children with SN is a bit like needing to be an emotional boomerang - you get thrown all over the place, all the time, plunge into the depths of despondency, then cross fingers and hope like hell that you bounce back right where you were, because your family NEED you to be chipper and happy. And this week, I just wasn't bouncing.

And as luck would have it, this was the sodding week that I had to take my son to his sodding 1-2-1 expensive swimming lesson. Because, swimming is taught differently in the UK to New Zealand, and here the group sessions were expecting him to put his face in the water to start freestyle, which he can't/won't/isn't ready to do. So he was floundering in the beginners' class, and when I squeaked "but he could SWIM in the UK," they looked at me as if I was a bit soft in the head. "I don't understand it," I moaned to our disability support woman from CSS. "In a 1-2-1 lesson in the UK, I saw him swim. Breaststroke. I saw him do it. Just once, but I definitely saw it. Then they put him back in the group sessions and he forgot how. And now he's here and it's even worse." "It's generalisation," she said, "he hasn't managed to transfer that skill yet." And she suggested that we look into another swimming school, 45 minutes' drive away, and give him 1-2-1 sessions again. At the cost of an arm or a leg, which I can't even sell because apparently he will need them in the water. If he ever takes his sodding feet off the bottom ever again.
I hesitated, because it was so expensive. Instead I asked the manager of Swim School 1 for some advice. He came and watched my boy splashing around in the shallows.
"He can't swim yet, that's the thing." As if I hadn't noticed.
"But he can. He did it. Once. In England."
"No, he can't get his head wet, so he'll never learn to swim until he does that."
"But he was swimming breaststroke in the UK. I saw that."
"No he has to learn freestyle."
"But he can't do that because he has a phobia of getting his head in the water."
"He has to learn to get his head wet."
"Gee, I've never met a real robot before. Do you run on battery or windup?"
"Yes, that's right, he's got to start by getting his head under the water."

This conversation convinced me that my boy was going to spend the next three years at the bottom of the beginners' class. So 1-2-1 Swim School 2 it was. There was the obligatory meltdown about a change, and the obligatory marital discussion about where exactly this money was going to come from (I think at the moment we've decided that the best option will be prostitution). I persuaded by other half by reassuring him that there was a charity we could apply for which would probably cover it anyway. Then I got there, and found that the charity did NOT cover a term's worth of lessons, but only four. And it wouldn't kick in until we'd paid for at least eight weeks first. Ow.

I left him at the poolside, took the smallies outside and spent twenty minutes in deep gloom, contemplating the years of wasted money. The screaming, the shouting, the hitting and refusing. The procession of swimming teachers who had failed to do the trick. My husband, quite reasonably, had put a deadline on this. "If he's not swimming in say six months we give up."
And then I went back inside and he was swimmming across the pool unaided. Breaststroke. In twenty minutes. After nine months of failing to get his feet off the ground.

Sometimes the peak parenting moments are not the ones where everything is easy and you are sitting in the garden watching your children in their delightful handwoven dungarees play beautifully with the wooden toys you created. They are when everything is rotten and you have reached the limit of your ability to cope, and then light breaks in. I have spent years sitting on the side of a pool cringing, whilst my son screams, bites, attacks his instructor. I have envied the other parents their easy ride to a floating child. That day I felt like the luckiest parent there. Boomerang mother. I can even handle the thought of a referral to CYFS.



Tuesday, May 1, 2012

"But it's PINK"

It all started with a fall from a treehouse ladder, where his neglectful mother was not paying enough attention because she was enjoying the luxury of adult conversation with a friend. He fell hard on his foot, and complained that it was sore. His neglectful mother gave him a cuddle and told him not to worry. Then she ignored him until her friend pointed out that he was walking on tiptoe, and limping. His neglectful mother thought about the implications of taking him and his two older brothers to Casualty, and decided to wait a bit and see if the limp improved. An hour later - when the toddler came up to her, piteously raising his eyes and saying "ankle sore" - she took him to the doctor, who agreed it was swollen. Off to the X-ray department, where nothing showed up on the X-ray but the doctors felt that a fracture had almost certainly occurred and he was better off in plaster. My eldest chose the colour, a respectable boy-blue.

Three small boys with nothing to do, told to wait for an unspecified amount of time in a strange environment would be a recipe for disaster in almost any family, never mind ones with additional needs. I spent the long waits between X-rays - "oh, we need a second X-ray?" "Do you really?" "Yes." "Fine, but I am going to saw my own leg off if you then say we need a third" - hissing, pleading, bribing and threatening my sons with lifelong incarcaration and NO SWEETIES EVER AGAIN if they wouldn't stop playing with the medical equipment. You know it is bad when you find yourself repeating sotto voce "It doesn't matter, I am not here to impress these people." But we survived, got home in one piece, well except for the broken leg of course.

Then, yesterday, he was limping again. The cast had come off the day before, and he had seemed fine - but when he woke up the next morning, he was limping badly and dragging his leg. "Sore ankle," again. Back we went. This time it was just him and me. Like night and day, as I hugged this beautiful, adorable child with the big blue eyes. And the nurse said she thought I deserved a holiday in Fiji, which is always nice to think about because it's quite cold here today. I felt like a proper, attentive, adoring mother, the kind who looks after their children properly and is able to think up suitable strategies to keep them entertained in the doctor's waiting room. End result: fracture is clearly not healed, back in a cast and referral to orthopedics. He chose a pink one.

When his brother got home from school he saw the pink cast. I had tried to pre-warn him "Your brother chose his own colour. It might not be a colour you like. It is his cast so it is his choice." Nonetheless we had thirty minutes of shouting and sobbing. Boys can't have pink. That is the RULE.

Everyone told me how calm I was about the broken leg/foot. Well, I reserve the right to be stressed and neurotic when it becomes clear that there is a major problem, but at the moment I kind of feel - broken foot - it heals - so what? It's the ongoing issues which are more troublesome, the developmental stuff the doctors can't fix. Should I have insisted on a blue cast, to keep consistency and a calm family? Or was it better to let life challenge the boy, let him be horrified by pink? It's impossible to say. That's why I prefer to be dealing with a broken leg, where the outcome is clear and the decisions straightforward.

Although I am a little worried that one of the doctors described my son's foot injury as "interesting." If it turns out that this is NOT a straightforward fracture I really am going to chop my own arm off. Although hang on, then I'd have to go back to the accident and medical clinic with my sons. Maybe I should just go for the holiday in Fiji. I'm quite hopeful, because I'm still a bit hazy about how medical treatment works here, but what is clear is that accidents are funded very generously through ACC. Maybe I can swing Fiji as a necessary part of the recuperation plan. Just for me and one child, of course, otherwise it would be too much like hard work. I wonder if I can claim on ACC for the trauma of having accidentally chosen a pink cast too?

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.

Saturday, March 31, 2012

Sending Excrement to Australia: "You need to take out a second mortgage"

There's no such thing as a free lunch, I mean weekend away. Don't get me wrong, I'm very glad we accepted the invitation to two nights' hotel accommodation and a seminar presentation on therapeutic approaches to autism. I mean, it was two kid-free nights. Plus, I have learnt absolutely loads about alternative approaches to treating autism. It's been an absolute eye-opener. A real revelation. For the first time I know the value of these treatments. So much so that I will probably never bother attending ever again. And I certainly won't be following their financial advice.

The warning signals came as soon as we checked in to the hotel. The organiser, an eminent dietician at whose feet the gluten-free families of our city worship, turned out to be very overweight. Look I'm a bit podgy myself but I'm not trying to make a living out of controlling other people's diet. "Hi, thank you for the advice about GFCF, have you ever heard of an amazing thing called calorie and portion control?" Secondly, when we arrived back from dinner she was standing outside our hotel room talking in a loud voice. She moved to let us past, saw us go inside and then continued to talk for..ooh, another hour or so. Her magic diet clearly doesn't teach social sensitivity.

I'm going to not follow the example of the conference, and present a balanced view. I have a fairly open mind about dietary treatment. I have a friend whose autistic children suddenly became verbal (aged five and six) after going gluten-free. Their behaviour improved too. She's not mad, she's intelligently sceptical, so I reckon she's telling the truth, especially as her kids then tested highly, exceptionally highly, intolerant of gluten. Which is the crucial factor. They were gluten-intolerant, in a way that could be scientifically measured. So gluten-free, for me, is one of those powerful therapies which make a big difference for SOME autistic children. But not all of them. Reputable surveys such as CS Kira's work on autism spectrum disorders state that a significant propertion of parents experience NO benefit from these diets, and that there is only a marginal difference between those who say GFCF helped their kids, and those who claim the same result from cutting out chocolate. You know what, cutting out chocolate is less hassle (well, unless the diet needs Mum to follow suit). In other words, the scientific evidence isn't there. Autism takes many forms and I am very comfortable with the notion that some kids respond to diet. Many aren't.

So, what I expected this weekend was a cautiously positive look at the field of biomedical supplementation and dietary management. Because this is stuff that really can help some children. Don't get your hopes up, it's not like we're looking for a cure or anything, but, you know, this works for some kids. Worth a shot. So I sat there, pen poised, interested and alert. We start with some scientific evidence about mercury and autism rates, plus zinc and magnesium lack in kids with ASD. Ooh, scientific rigour. Count me in.

Oh, but hang on. The speaker is taking a different tack. Autism CAN be cured after all. With her help. Amazing stuff. A lot of people who come to these specialists directly after receiving their diagnosis put them on gluten-free, dairy-free diets and the kids learn to talk and interact. Wow. Except that, you know, an awful lot of autistic kids DO learn to talk between the ages of three and five, without changing their diet in the slightest, or taking any of these fancy supplements the speakers are going on about. It's called development.

Things get woollier. To applause and appreciative gasps, we hear how Case Study A started to sleep after starting on the biomedical dietary regime. But hang on, you said you prescribed melatonin. That normally nails sleep problems, whether or not you ban bread and cheese as a midnight snack. Plus, I can't help but notice that as we stop talking about mineral deficiencies and start discussing expensive medications, then suddenly the all the heavy-duty science drops away. There is no data to back up these amazing results, no trials demonstrating the difference supplements or gluten-casein-free made to a set of children. It's all a bit nebulous. "It is IMPERATIVE that you do gluten and dairy free for your child," bellows the naturepath. Really? Without any evidence? You just want us to BELIEVE you because you are speaking emphatically and with a sense of conviction? Like all the worst sermon-writers, you are bossing us around without explaining WHY. It all starts to feel familiar, like being back in church. They show us a picture of an oxygen tank. It will be REALLY good for our children to spend time inside this, we are told. Why? Are we sending them to the moon?

Hey, well, it's harmless stuff, I think, shifting in my seat and biting into one of the free gluten-free snack bars we have been given. My word it tastes revolting. Pretty packaging, though. This is all relatively cheap, right? I mean, if I wanted to change my kids' diets I could just do it, no bread, more rice. Hold on, what's the speaker saying "We encourage parents to do whatever it takes, borrow from their parents, say to people they don't want birthday or Christmas presents, they just want money, take out a second mortgage. Because this is so important to our kids." No. I can't have heard that. The biomedical woman didn't just stand up and say "Take out a second mortgage so you can afford me." Oh my word she did. The brazen cheek of it. For what essentially amounts to some expensive vitamin pills. Suddenly we are on Planet Rip-Off. (Maybe that's why we needed the oxygen tank). I have a revolting taste in my mouth, and it ain't the snack bar.

Whilst I am reeling, we explore Planet Rip-Off a bit further. Amazingly, we should change our diet and take extra expensive supplements rather than Anti-Depressants. (Rather patronisingly, the speaker assumes most of us are on them already because, you know, raising autistic kids is HAARRRD). She explains about all the secret scientific and medical evidence on SSRIs. Apparently, the evidence all shows that SSRIs are a placebo but this has been suppressed because the medical journals will only publish what the drug companies want. Hmm, or possibly the medical journals didn't publish the evidence because it was BAD SCIENCE and didn't meet PEER REVIEW standards for publication. I feel slightly sick at the misleading flim-flam, designed to wean vulnerable women off reputable medication and onto untested supplements.

So I am relieved when the next speaker is introduced. Back to earth. Oh, this will be good, no-nonsense stuff. Chiropractic care has been very helpful to me when I have had lower back pain. She is smily and upbeat with a disabled child of her own. Lovely, heartwarming stuff. Oh, the child is doing really well. Amazing. It's all down to her regular spinal readjustments. This time I am sufficiently peturbed to ask an actual question. Excuse me, I say, many children with her disability do very very well. Is this just one of the children at the high-functioning end of the spectrum for her specific disability, or is she actually showing unusual developmental features? "Oh, she can write. She should have trouble writing." Yeah, but lots of children with her disability have learnt to write. Some take school exams and pass them. Some go to college. "She's such a delight and a blessing." Yes, and so are my children. Even without the constant spinal readjustments. "We need to focus on not doing but being. Enjoying our children in the now." Yeah, too right. I'm gonna focus on not doing chiropractic care.

The day gets more surreal. We do a quiz, and it becomes clear that more than half of the audience are already "doing" the gluten-free, casein-free, supplement-intensive thing. So why are they here? No wonder they are nodding vigorously. They've all signed up, taken out their second mortgages. It all starts to feel very church-like. Preaching to the converted. But they are all so happy and friendly. They BELIEVE, whereas I am scowling in a corner, demanding that we look at the evidence. I feel guilty for my suspicious mind, like a Biblical scholar visiting a convent.

Dutifully, I take notes, and try to pull out the sensible suggestions from the expensive murk. I'm going to get my children's blood tested (free, by the GP) for vitamin and mineral deficiencies. I'm going to find out whether we can get children's dosage of pine bark extract (which has tested in one study as as effective as Ritalin for hyperactivity) here in NZ, and possibly trial it on one of my sons. I also get a possible answer to one of the mysteries that has bugged me as regards my younger two: why their terrible, chronic diarrhoea has largely cleared up the second I cut back on fruit. (I did this because we were skint, and this was a welcome side-effect). It is quite possible that they have some yeast or bacterial development in their gut that may be producing unhealthy bacteria that was messing them up inside. Only thing is, to test this hypothesis according to the doctors here, I would need to send their faeces to an Australian lab. My husband is quite keen on sending faeces to Australia but would rather it went to one of the rival rugby league players that thrashed his team last night. It would cost thousands. For a therapy that will amount to "take probiotics and cut back on fruit."

And that is what leaves me livid. It isn't expensive to tell parents to try gluten-casein-free diets. Iron, vitamin and mineral blood tests are free. Even the fancy stuff, like pine bark whatdoyoucallit, will cost me about thirty US dollars. When you strip away the mumbo-jumbo, what you have is a simple diet and some UNTESTED or UNPROVEN suggestions for minerals and vitamins that may or may not help our kids (Kira's data suggests that most of them don't, most of the time, but it's worth a multivitamin or two to cover our bases). Why the hell have they seriously recommended we consider a second mortgage? Where are these exorbitant expenses going to come in? Their "consultancy" and "tests," of course. I can't help but feel that the rather porky nutritional expert is eating too many pies at her clients' expense.

I am not averse to spending big money on my children. I don't have a job, because right now they need me. We nearly bankrupted ourselves and made the mortgage broker's eyes water by insisting that only this house would do, the one with four bedrooms on one level so that we could all keep safe and the children would stop hurting themselves and each other at night. Ditto the people-carrier, so that they would stop hurting each other whenever we drove. I sold my christening gold coin to pay for a course of therapy when it became clear that one child needed it. I have twice paid eye-watering sums to a London consultant to ensure that my sons were assessed by someone who knew her job. I have bought sensory equipment, paid for unnecessary childcare so my sons could have the sense of a social life. I booked a therapist for my youngest here when we weren't even sure we would be able to pay the mortgage. There were the drum lessons in England, to stop self-harming. The years of private speech therapy, at sixty quid an hour. I grimly go on paying for expensive private swimming lessons because it is clear that even if they aren't going to work, my boys ain't gonna learn to swim any other way. Packed lunches are full of expensive ingredients that are all my boys will tolerate. So yeah, I know about spending money on their needs that my friends get to spend on fun.

But there are limits. A second mortgage, to pay for vitamins? Send my son's shit to Australia to be tested? Isn't there an adequate supply of Australian bullshit already? Their recommendations remind me of the gluten-free snack bar, pretty on the outside but bitter to the taste. When I come home, I research the scientific evidence that we were shown, and discover that even that was misleading and partial. Unless of course the entire autism research industry is engaged in a massive cover-up, as with the medical journals' refusal to condemn SSRIs. Given the amount of money that they are asking, this stuff isn't just misleading, it's dangerous. "I do a sliding scale of payments," one of the speakers assures us. Really? I think. I've just slid right off the end.

I must have looked fairly sceptical because at the end of the day they mysteriously missed me out from the feedback sheets that were passed around. I imagine filling one in. "Stop trying to rob people. Don't use conspiracy theories to sell products. And hey, whilst we're at it, don't talk loudly outside people's hotel rooms late at night."

Wednesday, March 28, 2012

My shameful secret

Don't tell anyone, obviously, but I have a secret I need to share. (That's what the internet is for, innit?) I actually rather like...(deep breath)...visiting shopping malls with my sons.

As a good liberal Christian, a hatred of shopping malls is practically an article of faith. I have lost count of the number of sermons I have heard filled with descriptions of these evil "secular cathedrals" "cathedrals to consumerism" "monuments to materialism" "Temple of Mammon" and other handy tropes. Jesus, I have been reliably assured on numerous ecclesiastical occasions, would be berating the poor till assistants in Farmers and the Warehouse, overturning their cash machines and laying about with a whip of cords, before nipping down to the local supermarket to do the same. I have tended to notice that women vicars very rarely preach this kind of sermon. This is probably because they are too busy, what with having to get the family shopping done on a tight schedule, unlike the male vicars of old who could afford the luxury of waxing lyrical about non-materialism whilst sending their wives out to do the dirty deed of food-and-clothes-buying instead. But even women vicars, who by and large tend to be a lot more, you know, REALISTIC about the inevitability of needing to buy loo roll and kiddies' shoes, even they will probably shy away from PRAISING the LORD for shopping centres, let alone suggest a Christian should spend recreational time in one. They're kind of a necessary evil, like the Western banking system.

But you know what? Shopping centres rock if you have a child or two with additional needs. They are INSIDE, AWAY FROM TRAFFIC. You can walk from shop to shop without worrying that your kids will end up squashed tomato on the road. Also, they are contained spaces, so that if one does a runner you are pretty much able to catch him up whilst he is still in sight. I realised this in the UK, when our Social Services Family Link worker took us to the Old Trafford centre and I suddenly realised that actually, the kids and I could manage this on our own. It was also on that visit that I realised how pretty the centres could be, they have been designed to be impressive architecturally and (after months pent up inside) I enjoyed the hugeness of them, the vast sweep of shopfronts and the ant-like people scurrying through.

But New Zealand shopping malls are the best. They have free children's play areas. These are next to a food court, so that mum can grab a sneaky frozen coffee and look with lust at the bookshop across the way. I love'em. Of course, on a nice hot day I'd rather be outside. Even on a nice cool day I'd probably rather be outside. But on a rainy day, with three smallies? Gimme corporate roof-clad mall-Land. If it gives us a safe outing to an indoor playspace, I will quite happily worship at the altar of Mammon, or at the very least, the Warehouse. Just don't tell my vicar.

Tuesday, March 27, 2012

Putting my clothes on inside out

Only Wednesday and already I feel wiped out. Today I had the CSS Disability Action lady. Who is lovely, and drinks tea, although I am a little uncertain about what exactly she does. She says it doesn't matter what we talk about. I think "well, surely it DOES at some level, because this is my time we are spending. I mean, if I want to talk amiable nonsense I can go to church anytime." (Note to self: must NOT repeat when I meet the Bishop). Gradually I am starting to see that what she does is know stuff: like where the best swimming school would be, or a fenced-in playground, or what holiday activities are on offer suitable for my kids. So this is good, certainly worth a monthly coffee. It's also going better than yesterday's mammoth meeting, which was two occupational therapists and a child developmental co-ordination worker. We spent two and a half hours drearily going through all the different ways in which my boys failed to make the grade, from social awareness to self-care skills like getting dressed. Just after they had gone I realised that I had put my own top on inside out, and spent two hours discussing my kids' delays with a label flapping on the back of my neck. Hmm, maybe that is why they asked so many family medical history questions. I can imagine them surreptiously discussing the case in the car "So...we need to work on self-care skills, should we start with the mother?"

I hope they're not planning to teach us anything, because I'm shattered by the combination of meetings, and in particular I feel wrung out emotionally by the boring, depressing job of ceaselessly reiterating my children's failings. I have heard in some distant universe of parents who bore about their kids' successes. I guess they are not the kind of parents who have three meetings in a week where people say cheerfully to you "Now, let's start with X, could you tell us where he's struggling?" It's particularly dispiriting because all of these meetings had sort of nebulous outcomes like "well thank you so much, we'll go away and discuss what he needs, and then we'll write a Plan."

The Plan is spoken of with such reverence that I start to feel a superstitious level of awe and anticipation at what it will contain. Clearly all our family's "ishoos" will be solved overnight by this magical piece of paper. I expect it will contain useful, attainable and practical targets such as
1. Ref: Child A and C. Cure autism, paying particular attention to social, sensory and behavioural problems.
2. Ref: Child B. Global Developmental Delay. Speed child up.
3. Ref: Mother. Teach her how to dress self. (Note: this target may be too ambitious)

Whilst we wait for this magical Plan to unfold, we do make some useful decisions. The OTs will start looking into specialist car seats for the younger ones and a referral to a urologist and Continence services. Which are not the kind of achievements I imagined myself getting excited about when I started this parenting lark, but heigh-ho. I am sure it is somewhere in the Plan.

I am hoping that this flurry of meetings settles down soon. I know I should be grateful, for all the help: I am, truly, but it is hard to see the wood for the trees when for the third time in two days someone says brightly to you "Can you just explain again why your boys are dangerous in public places?" So last night I took my eldest out at 6.45 pm, down to the beach. My reasoning was that I wanted to do something fun and uplifting and enjoy my children, remember why they were amazing. So down we went together. He got changed into his wetsuit and splashed in the sea. Then he drew pictures on the sand with his feet, and finally, with ten minutes to go before we needed to get home, we walked down to the end of the beach to show him the fossil forest that was left there 200 000 years ago, when a volcanic eruption solidified treetrunks to stone.

It's a moving sight, and brings me a sense of peace. I look across at the volcanic island across the bay, and feel a lot better: sort of back in the right place, somehow, as if the mountain and the water have settled my soul again, after the rufflings of the day. I must do this more often, I think. We walk back to the car. My son scampers beside me, first worrying that the crabs might bite his feet and then asking if he can crawl like a dog. I help him out of his wetsuit and into his clothes. And I am happy, simply and unproblematically so. The lists of professional meetings recede into the emotional distance. This is the right place to be, I think.
And that's what's useful about this marathon of meetings, I think, they enable me to suss out the local support landscape, so that we aren't pent up at home, but can get out and enjoy the view. That's my plan, anyway. Now if you will excuse me I will go and practice putting my T-shirt on the right way around.

Friday, March 23, 2012

But he only eats Marmite sandwiches: Children's books and one-track minds

We were at a disability freebie today, a day out at a petting farm. It was glorious. Not just the setting or the treat, but the relief of being surrounded by other families who were just like us. You didn't have to worry what other people thought about the meltdowns. As a delightful extra, lunch, we discovered on arrival, was thrown in for free. (I am just about to serve my packed-up ham sandwiches and hard-boiled eggs for dinner). My husband stood in line for the sausage sizzle (which is a Kiwi institution treated with reverent seriousness, I am half-expecting the New Zealand Masterchef programme to feature an episode where the contestants earnestly discuss the precise ratio of mustard and onions to ketchup and sliced white bread). Whilst I hissed at the servers "No Mustard. They won't eat it if it's got Mustard. Not even a tiny bit. Please, No Mustard," he got talking to the woman in front of him, whose son was going to eat his usual lunch: Marmite sandwiches. That's all he eats for lunch. And for dinner, three nights a week too. Suddenly the earthquake damage to the factory which makes New Zealand's Marmite became very serious. For the time being it was OK, she told him. She had put out an internet appeal and people from all over New Zealand were sending her supplies. She hoped she'd have enough to feed him that way until the factory was working again. Jeepers, and I was worrying about my children getting bored with too many cold burnt outdoor Kiwi sausages.

I've been lucky enough not to experience that level of food "jag," as they are known in the occupational therapy trade, but I can so sympathise about children getting stuck on a preferred, favourite, familiar thing. I hadn't realised how horrendous I had found the demand for the same book, or couple of books, for years on end , until I stumbled across this brilliant blog to which I am trying to link: http://www.blogger.com/img/blank.gif (look up www.thelittlewoodenhorse.blogspot.com if my linkage fails) It's another one on the Mumsnet network and I read it assiduously, although initially it made me madly jealous. Like seeing someone eating proper sausages indoors when I all I was getting was the ubiquitous Kiwi sizzle. You see, when I had my first child I KNEW he would be a booklover, just like me, who had refused to do anything BUT read as a child. I looked forward with eager anticipation to the reading we would do at the library together. When I started taking him, he fiddled obsessively with the computers in the corner of a room and barely registered that the rest of the library existed, other than a wail for a DVD as we left. Not quite what I was hoping for. He also hated being read to, except at bedtimes: and at bedtime would only want one story for months at a time, and would scream or refuse to co-operate if I read anything else. Everyone said it would pass, but it didn't It went on for years. I grew to loathe reading to him. And I felt depressed at the sight of picture books we couldn't share, the rows of shiny colours in the library that had to be for other children, never for him.

Gradually it improved, but I was by then too tired and stressed to think of picture books with any enjoyment, or to see evening reading as much more than an irritable chore. Then my second came along, and with his speech delay came a wild dislike of being read to, unless it was one of the Thomas books. Headbanging in his room, and the difficult of getting him to sleep without a tantrum and an attempt to throw himself down the stairs, meant that reading stories together went out of the window. A story at bedtime would guarantee an hour or so of screaming afterwards. Often I would have to stand outside his room, holding his door shut with both hands, whilst he howled and hurled his head against it repeatedly. (When we left the house, we found that he had banged dents in those great solid English walls beside his bed). Not worth the hassle.

I couldn't face even starting to read at bedtime to my youngest. This is me, with a Ph.D in English Literature, who couldn't get her nose out of a book during childhood. Even if I'd wanted to, it was impractical. The other boys' needs meant that I had to run upstairs, pop him in his cot and then dash straight downstairs again, before anything terrible happened in my absence. Oh, I did keep trying. I dragged them to the library occasionally. My eldest would cry if I made him choose anything other than a TV knock-off and my middle one would go systematically around the room throwing books off shelves. It was Purgatory. This dire pattern continued when we moved here. My first post on this blog was inspired by a terrible trip to our local library, when the librarian watched my children for a couple of minutes, took me to one side, kindly asked about Special Needs, and suggested I apply for some help.

By now my eldest had learnt to read, but was refusing to read any of the books that we gave him: they were chapter books, and although he could manage them perfectly he found them too scary. He kept stealing his brother's picture books, the ones that I was tentatively managing to read to him in bed for the first time. As I read the blog "The Little Wooden Horse," and envied the easy way books were shared in that house, an exciting thought suddenly hit me. OK, he wanted picture books. Well, he hadn't wanted them when he was younger. Maybe it was a stage he had missed out on. I wanted him to read chapter books for the entirely selfish reason that it would keep this hyper child occupied for a bit. But perhaps this was the wrong tack. Maybe instead of hurrying him along I needed to stop and let him enjoy picture books now.

I experimented, with starting to read a simple story to the two of them together. This worked. They both loved it. The younger one thought it was brilliant to do something with his elder brother, and the elder one loved the picture book. I loved it, too. The next week I took them to the library, and whilst the younger ones stood on their heads and screamed a lot, I told the oldest it was his job to choose a picture book for us all to read together.

We're doing it every week now. Sometimes more often. Even more often than taking them to a sausage sizzle and trying not to scream at the helpers that there to be is NO MUSTARD on anyone's bread. My eldest loves curling up in bed with the middle one, who is so excited to share a story with his big brother that he will let me read new material three or four times a week. I am suddenly getting a chance to dip in and out of picture books, with a child who is alert and keen, plus a younger brother who is adoring the sense of being read to. It is like a Renaissance. I haven't lost the chance to enjoy picture books, it has just happened later. I feel as if a door I shut several years ago is suddenly open, inviting, and my children are standing there, beckoning me. We are a story-reading family at last. Such a pure, glorious pleasure, like water in a desert, or sweets after Lent. There's something in that about Special Needs, and patience, and things being even more special when you have waited for them longer than the average. There are upsides to this whole additional needs business, even more so than the occasional free ticket to a petting farm.
I do hope that that woman gets enough Marmite to keep her son nourished and healthy until the Marmite factory starts work any again. And I hope even more that her boy gets to taste a wider range of foods, so that she tastes the sweetness of relief and enjoyment that I am experiencing about children's picture books, now. I just hope for her sake that he doesn't then get fixated on these blasted sausages in white bread.

Wednesday, March 21, 2012

Why autism is not infectious, and Vegemite leaves a nasty taste in the mouth...

I know this because at our local music group there were vegemite sandwiches for the toddlers. "Ooh," I said in surprise, "I thought there was no Marmite left." "This is Vegemite," the mother standing next to me hissed, with the air of someone imparting a state secret. "Oh," I said, and took a sneaky bite. Quite nice, I thought, really rather palatable, until: "Oh Jee-no-don't-say-that-this-is-a-church-jeepers," I reeled, as the aftertaste hit me. A yeasty sour tang that made me feel more sympathetic than I have ever done to Hillary Clinton, who nearly caused a diplomatic incident on a visit to Australia when she asked why on earth one would want to ruin a perfectly good piece of toast with the stuff.

It was a lovely morning. I enjoy the group hugely, mainly the chatter, but am coming to enjoy the music part too. It's been quite some time since I've had an excuse to be a caterpillar and touch my hundred little toes. (Although I am still a mum, I can't sing about caterpillars going off to school without starting to wonder about how on earth you fund a hundred school shoes). Plus, my two kids - the toddler and the preschooler - behaved pretty well, on the whole. My toddler has realised, from watching my eldest last week, that you are meant to copy the actions and join in. He has fun, and so did I, even if my preschooler (who should've been at kindy, but I felt like bringing him instead) spent much of the session glued to my legs, shouting "carry, carry" and screaming until I wondered if the other mums would think he'd been traumatised by my negligently letting him watch the horror film of that name. But, you know, all good fun and that. We were doing pretty well at blending in, I thought. A NORMAL mum doing NORMAL things.

Then one of the elderly helpers made a beeline for me. She was the one, I noticed with some concern, who had wittered on at me about not getting this time again a couple of weeks ago (see previous rant). Now she had a concerned Responsible Citizen Challenging Errant Mother look on. "You brought your eldest son again," she said. "No," I said blithely, "this is my middle son." "Oh," she said. "I have been talking to some of the other ladies," she said, "and you know, you brought your oldest son to this group twice in the last term. And you know, we have decided, if he is off school, he can't come, because of the risk of infection, you know, he might infect the other children."

"Oh, don't worry about that," I said blithely, not recognising the subtext at all. "He wasn't ill either time. The first week I brought him, it was because he had been too stressed to sleep the night before. The second time, it was because he had spent half an hour screaming on top of the climbing frame at school, they couldn't get him down, and I thought a day off might settle him. I wouldn't bring an infectious child." I look at her face, expecting to see relief that I am not, after all, Evil Irresponsible Mother.

And then I see that she is crestfallen, slightly unhappy, searching for something else to say. As if she's still unhappy with my boy coming along, but hasn't found a reason to articulate, or at least one that she can share with me. And then I realise all of a sudden what this is REALLY about, and that she is casting around for what to say, because her first cunning approach has failed. Oh Lordy. The thing was, you see, that the first time I brought my eldest he was absolutely brilliantly behaved and I was really proud of him. The second time, he was so excited to come again that he was a bit hyper during the unstructured play time after the music had finished and couldn't/wouldn't/didn't stop throwing the soft balls around. Not ideal with smaller children. So I had already decided that I wouldn't bring him again, because he struggles to moderate himself when excited and I didn't want him to disrupt the group. Because to the best of my ability I try NOT to make my children a public problem. Because that's what irresponsible mothers do.

I could have explained all this, of course, put her mind at rest. But I was too hacked off. If only she'd had the courage to say what the problem REALLY was. She would have found I would have agreed completely, and had already decided to take steps to ensure it wouldn't happen again. But, instead, there was this slight duplicity. Like the Vegemite, it left a nasty taste in my mouth. A mixture of guilt, and irritation. I decide not to pursue the conversation, and leave with a smile on my face, terribly tempted though I am to wilfully misunderstand her and assure her that it's OK, autism and Aspergers aren't actually infectious.

Tuesday, March 20, 2012

Because New Zealand Marmite tastes like vomit

Look, it does, all right? I will not brook any argument. The entirety of New Zealand may be in mourning for the New Zealand Marmite factory, unexpectedly shut this week after some earthquake damage, but believe me, they are dangerously deluded: it tastes revolting, and its absence from the nation's breakfast tables ought by rights to be celebrated as a chance to reclaim the national palate. New Zealand marmite really does taste like vomit. This is not a recent discovery of mine, but the first (of several) fundamental and passionate disagreements with my other half about food. He brought it back to England reverently, after our first trip here. I tasted it and spat it out. Clearly I was channelling my inner toddler because I've refused to have anything to do with the stuff since.

I am kind of wishing that I had done the same with my middle son's kindergarten, because it really hasn't been great, and I should probably have followed my initial instinct and pulled him out at the beginning.

Thursday, March 15, 2012

Don't Pretend There's No Blood on the Bouncy Castle

Shoes in New Zealand are like everything else that is smaller than a car: pricy. I have been dreading winter shoe shopping and enjoying letting my boys be as barefoot as they are comfortable with. But I am going to have to change policy. I might also have to invest in some nose-protection gear, and never let the children into hardware store Mitre10 again without waterproofs (possibly also disguising them: I think the first-aiders might run for cover if they see us pull up outside).

It's a convoluted tale, and it starts the day before our visit to the hardware store. We are at home. Picture, for once, an idyllic scene. No one is tantrumming, and the boys and I are hanging out in the garden. The two littlies and I are at the front of the house, on the great expanse of tarmac where they like to ride their trikes and toy cars. The big boy is at the back of the house, practicing cricket. Apart from the cursed mosquitoes, who have migrated to our front yard with all the joy of the Israelites sighting Canaan, it all feels pretty perfect. Because we have a slight rise at the front of our house, I push my middle son in his toy car up the slope, so that he can have the fun of rolling down, squealing. It is the sort of timeless fun that I imagined myself doing when I made the decision to have kids.

So then the little one wanted a turn, so I took his toy car and briskly pushed it up the slope. I expect him to squeal with joy too, but he is strangely quiet: and, after a few seconds, he gives a little whimper. I look down, to where his little hands are pointing, expecting to see a mosquito bite. To my horror, his bare feet are covered in blood. I hate the cliched quality of a phrase like "to my horror" but there is no other way I can think of to describe the shock and fear that rippled through me. Because I knew instantly what it was, having seen the phenomenon before. It's a sensory issue, hyposensitivity (or undersensitivity, in layman's language, or delayed sensitivity, in my kids' case) to pain. You see, his bare feet had been dragging on the gravel as I pushed him. But because of a delay in sensation, he hadn't known what was happening, and hadn't known to move his feet. So by the time the sensation kicked in, his feet were scraped raw and bleeding. Nor does he cry for long: the pain is clearly not much, because after showing me he wanders off to play calmly, leaving little droplets of blood on the ground as he walks.

I feel sick, not because of the blood but because I know what it means: it's another sensory issue, and quite a worrying one.