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, June 7, 2012
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.
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.
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.
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.
"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?
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.
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.
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