How do you get your child to tidy their room? Or more importantly, how do you get your children not to habitually wreck the room in the first place? I've been a parent for twelve years and I still haven't found the a solution to this quandary. I am not even sure there is one. I have heard of mythical children who are clean, neat and tidy, but I'm not entirely sure I believe in them. Even my autistic kids, who should be anal clean-freaks, aren't capable of being in a room for more than ten minutes without destroying it. I have tried bribery, guilt, corruption and death threats but it seems there is no force greater in the universe than the compulsion of a child to live in cuddly-toy induced squalor.
I do try to keep particularly messy activities like painting, playdough etc, away from the kids' bedrooms. Craft-type things are done at the dining table, but my kids have are very practiced at spreading the devastation throughout the house. The glueing and sticking phase was enlightening. Who knew the ingenuity of two-year-olds when it comes to finding interesting places to stick random pieces of Argos catalogue? I was mildly freaked out when, months later, I was finding tiny pictures of remote control cars behind furniture and Charlie's effigies of Iggle Piggle, glued to the inside of my knicker drawer.
Then there were the glitter trials. With hindsight, providing a fairy-obsessed six-year-old (Nicki) with a brand new glitter sprinkler wand wasn't the best plan. I left her at the table in her pink tutu, happily sprinkling 'fairy dust' on her magical castle picture with her magic wand. When I returned, the fairy princess was gone, but the dining room was very... er...shiny. As was the rest of the house. She had managed to cover the dining room, living room, three flights of stairs and her bedroom carpet before being intercepted by the wicked hoover monster (me). She tried to appeal that the carpets were much prettier this way and was not a happy fairy when I didn't agree with her. It didn't matter though, because glitter is one of the hardest things to successfully hoover up, and so along with the interesting Argos catalogue decor, we also had sparkly carpets, shoes and feet for months. Stig and I are Noddy and and Big Ears, welcome to Toyland.
If you had asked me years ago, what the single worse thing in my house was, I'd have said Playdough, in a heartbeat. But I'd have been wrong. You survive the playdough nightmare once or twice, maybe even a third time you'll be foolish enough to think that they're old enough now, to be trusted not to mulsh it all together in one big shit-coloured mass and proceed to smear it over the walls / furniture / each other. But eventually, weary and battle-fatigued, you will resolve never to buy the evil material again, and that's the end of it. The beauty of Playdough is that everybody knows it's evil. Only a half-wit (or non-parent) would give playdough as a gift to someone else's children, and there-in lies our saviour.
The bain of my life, however, is beads. Yes, beads, the toy that maims. The injuries that have been caused in this house because of bloody beads. Not to mention a good few hoovers we've knackered. Our house has not been bead-free in about ten years. They're everywhere! Multicoloured and all shapes and sizes. Square ones, SQUARE ones??? They hurt the most, it's like standing on an upturned plug. The tiny round ones are impossible to pick up and get wedged between your toes. Broken glass beads are a particularly fun thing to encounter on your way to the loo in the middle of the night. The amount of unecessary bloodshed we have endured because of childrens' fashion jewellery.
From bitter experience Big Ears will no longer let me within a ten foot radius of a bead-sighting with the hoover. They're in the radiators, the sofa's are full of them, the washing has to be shaken out before I put it in the machine, it's a constant ghastly nightmare.
So for those of you who think buying a nice little jewellery-making set is a thoughtful, harmless present; a word of advice, please check with whichever parent is responsible for the hoover before inflicting this misery upon them. Perhaps try something that can't be spread all over the house, like a nice cuddly toy, preferably one that doesn't sing at ninety decibels in an american accent or cause you to shit youself everytime you walk past it by shreiking at you.
Beautiful Blogger Award
Thanks to l'Aussie for my Beautiful Blogger award
Tuesday 21 February 2012
Monday 20 February 2012
"Mum, Chill out!"
Jamie Lee is now in her first year of high school and my nerves are shot to shit. I thought her major problem would be social interaction. Evidently, it's organisation, which you wouldn't expect to be the worst thing, but it's exasperating! Turns out that aspergers and adolescence do not make a very productive combination, quelle suprise!
Jamie has a big school bag and a smaller one. She piles all her shit up and decides which one she'll use for the following day, chucks in everything she thinks she'll need from memory (because she's lost her timetable again) and the rest is casually flung back in her drawer /on the shelf / under the desk. She rarely knows where her planner is and if she can lay her hands on a full PE kit, it's nothing short of a miracle.
I have dreaded this for many years because of Jamie's aspergers. I actually thought this would be one of the most difficult transitions she would ever have to make in her life, and it has been a major adjustment for her. But I really should have known from Jamie's attitude to certain things, that getting her to give a major crap about anything as boring as lesson planning and homework was asking far too much.
A typical school morning...
"Jamie, what are you wearing under your shirt?"
"It's cold." That's the only answer I'm going to get, but I can see through her white shirt that she is wearing her nightie underneath.
"Go and change please, put a clean top on underneath your shirt if you're cold."
"This one's already warm"
"Yes, because it's your nightie and you have slept in it, PLEASE GO AND CHANGE". Grit teeth, hold breath, count to ten...
She actually has me questioning if I'm the one who's going mental. She has this look that she gives me whenever I ask her what she considers to be a stupid question. You know, like; Where is your other shoe? Have you done your homework? Why are you wearing odd psychadelic socks for school? Have you cleaned your teeth/brushed your hair? It's kind of a blank glare, but she's clearly thinking that I'm some kind of mental, paranoid, overbearing, schizophrenic mother. And of course, the realization that she really doesn't give a toss makes me become the mental, paranoid, overbearing, schizophrenic mother.
"Jamie, do you WANT to get another detention?"
Blank look, not arsed.
"You CANNOT wear odd shoes to school!"
Blank look, not arsed
"Darling, if you don't clean your teeth, your breath will stink." (I gave up on the healthy argument eons ago, if the results of threat / reward aren't imminent it's even more impossible to get her to give a shit).
Blank look, licks teeth with tongue, this is sufficient.
"Jamie, please, for the sake of your mother's sanity will you brush your hair?"
Rolls eyes, token gesture of brushing hair for aproximately thirty seconds before putting a bobble in it. She looks like she's slept in a hedge. With a family of sparrows. I'm losing the will to live.
She puts clean clothes back in her washing basket because she can't be arsed to put them away. Then, come Monday morning, she doesn't have a clean jumper. Rather than ask me (because she knows I'll say that she HAS a clean jumper, because I gave her clean uniform the day before), she'll wander round upstairs in her underwear for half an hour till it's nearly time to leave, before rumaging through her dirty wash basket looking for last week's school uniform, or indeed the clean one she's been given that now stinks of dirty washing.
The first time she was given detention for failing to hand homework in on time she was mortified. She was genuinely embarrassed and upset. That reaction lasted the first two or three detentions, now she doesn't bat an eyelid, which is what I knew would happen. Incidentally, she does do the homework, with me breathing down her neck, but then she loses the homework or forgets to hand it in. I got her into a routine of going to homework club, I was really proud of her, and me, for handling the new challenges of high school in a responsible manor. Turns out, half the evenings I thought she was at homework club, she was in detention for not handing her bloody homework in. Her answer to this..."Mum, Chill out will you!" Er, NO!
The school have been brilliant. They've rallied around, worked with us to try and help in whatever areas they can. It's an ongoing process, as is everything with a kid like Jamie. She's loving high school. She has grown up so much even in the few months she has been there, and she seems to have renewed enthusiasm for things. Academically, there's no doubt she was ready for this next stage in her school life, but in other areas, well... we're keeping at it...
Jamie has a big school bag and a smaller one. She piles all her shit up and decides which one she'll use for the following day, chucks in everything she thinks she'll need from memory (because she's lost her timetable again) and the rest is casually flung back in her drawer /on the shelf / under the desk. She rarely knows where her planner is and if she can lay her hands on a full PE kit, it's nothing short of a miracle.
I have dreaded this for many years because of Jamie's aspergers. I actually thought this would be one of the most difficult transitions she would ever have to make in her life, and it has been a major adjustment for her. But I really should have known from Jamie's attitude to certain things, that getting her to give a major crap about anything as boring as lesson planning and homework was asking far too much.
A typical school morning...
"Jamie, what are you wearing under your shirt?"
"It's cold." That's the only answer I'm going to get, but I can see through her white shirt that she is wearing her nightie underneath.
"Go and change please, put a clean top on underneath your shirt if you're cold."
"This one's already warm"
"Yes, because it's your nightie and you have slept in it, PLEASE GO AND CHANGE". Grit teeth, hold breath, count to ten...
She actually has me questioning if I'm the one who's going mental. She has this look that she gives me whenever I ask her what she considers to be a stupid question. You know, like; Where is your other shoe? Have you done your homework? Why are you wearing odd psychadelic socks for school? Have you cleaned your teeth/brushed your hair? It's kind of a blank glare, but she's clearly thinking that I'm some kind of mental, paranoid, overbearing, schizophrenic mother. And of course, the realization that she really doesn't give a toss makes me become the mental, paranoid, overbearing, schizophrenic mother.
"Jamie, do you WANT to get another detention?"
Blank look, not arsed.
"You CANNOT wear odd shoes to school!"
Blank look, not arsed
"Darling, if you don't clean your teeth, your breath will stink." (I gave up on the healthy argument eons ago, if the results of threat / reward aren't imminent it's even more impossible to get her to give a shit).
Blank look, licks teeth with tongue, this is sufficient.
"Jamie, please, for the sake of your mother's sanity will you brush your hair?"
Rolls eyes, token gesture of brushing hair for aproximately thirty seconds before putting a bobble in it. She looks like she's slept in a hedge. With a family of sparrows. I'm losing the will to live.
She puts clean clothes back in her washing basket because she can't be arsed to put them away. Then, come Monday morning, she doesn't have a clean jumper. Rather than ask me (because she knows I'll say that she HAS a clean jumper, because I gave her clean uniform the day before), she'll wander round upstairs in her underwear for half an hour till it's nearly time to leave, before rumaging through her dirty wash basket looking for last week's school uniform, or indeed the clean one she's been given that now stinks of dirty washing.
The first time she was given detention for failing to hand homework in on time she was mortified. She was genuinely embarrassed and upset. That reaction lasted the first two or three detentions, now she doesn't bat an eyelid, which is what I knew would happen. Incidentally, she does do the homework, with me breathing down her neck, but then she loses the homework or forgets to hand it in. I got her into a routine of going to homework club, I was really proud of her, and me, for handling the new challenges of high school in a responsible manor. Turns out, half the evenings I thought she was at homework club, she was in detention for not handing her bloody homework in. Her answer to this..."Mum, Chill out will you!" Er, NO!
The school have been brilliant. They've rallied around, worked with us to try and help in whatever areas they can. It's an ongoing process, as is everything with a kid like Jamie. She's loving high school. She has grown up so much even in the few months she has been there, and she seems to have renewed enthusiasm for things. Academically, there's no doubt she was ready for this next stage in her school life, but in other areas, well... we're keeping at it...
Monday 23 January 2012
The Real Truth About Autism?
I don't normally get involved in debates and rows about autism, even though two of my kids are autistic. I recently discovered Austism Daddy's blog and Facebook page, and follow them with interest as, to me, he gives one of the few honest portraits of what living with autistic children is really like. Some people may consider him to be negative, but as a parent of autistic children, I consider him to be a realist.
The reason for my following outburst (yes, this is to be an outburst) is an article in the Daily Mail:
Why can't we face the truth? Having an autistic child wrecks your life...
It was published some time ago but it has only just resurfaced on the likes of Facebook and it's the first time I've seen it, otherwise I'd have stuck my oar in ages ago. I have, along with several other people, made my feelings clear about this article on Facebook. Yes, this is an emotional response from a Mum of autistic children, but that is kinda my point. In my experience this article in no way reflects the feelings of parents of autistic children. Yes, my children are 'high functioning' so some would say that it's easy for me to say, but autism is no picnic, high functioning or not.
Surely the very nature of being a parent means your life is enriched by having children, there's no love in the world like that of a parent for a child. Are we to presume that that love is somehow diminished by autism? Or that we were cheated out of parenting a 'normal' child. I also have two non-autistic children and as anyone who reads my blog will know, they can be just as challenging at times, but my love for them is no more or less than for the others. I'm with Autism Daddy on this one; you hate the condition, but you don't think it would have been better if your child had never existed in the first place, at least I dont.
I have reposted the little I have written specifically about my childrens' autism. I would advise that if you want the real story about autism, ignore all this irresponsible reporting out there and ask someone who lives with it every day, not a 'dispassionate observer' such as Carol Sarler.
It’s not easy being Sam
Why is it that a child whose devout obsession is biscuits, when offered a broken one would rather starve? Everything should be whole, intact, and ideally symmetrical. The National Autistic Society estimates that approximately one percent of the UK’s population suffer from Autistic Spectrum Disorders; our five-year-old son, Sam, is one of them.
Before Sam was born my perception of autism was of Dustin Hoffman types from Rain Man, or the unruly kids labelled with ADHD because they were out of control. I admit that I was once party to the belief that what was needed was good old fashioned discipline. Then Sam came along…
He came into the world bang-on his due date weighing in at 10lbs 1oz (consequently relegating our wedding anniversary to the second priority of the day for at least the next 18 years or so). He was a placid and affectionate baby, sturdy and smiley, and such a flirt. Sam had enormous, sparkling blue eyes and the longest eyelashes I’d ever seen. He had ten fingers, ten toes and was the picture of health, we thought. As he appeared to grow even stronger it never occurred to us what vulnerability lay beneath the surface. He was about two years old when we began to realise that his “quirkiness” was a little more than that.
We started to notice his lack of eye contact during conversation, his frustration when he didn’t understand things, and his obsessive perfectionism. He began to react severely to unexpected and loud noises or crowds of people and became ridiculously picky with his food. His bedroom was immaculate; his toy cars all lined up facing the same way. He had designated drawers for Lego, building blocks, crayons etc. Weird perhaps, for a two year old, but he was so bright and happy, what could possibly be wrong? Despite Sam's challenging behaviour though, he was funny, playful, very affectionate and genuinely liked by most people who met him.
One of Sam’s recent obsessions is Mr Men, after seeing part of a DVD at a friends’ house. His obsessions are literally that; they occupy his thoughts day and night, which means whether we like it or not, they occupy our thoughts too. So it wasn’t a total shock when I was rudely awakened at four am recently, to find Sam peering at me with a look of deep concern on his face. Governed by an overwhelming desire to sleep; I gave in and promised to buy him the DVD if he went back to bed… my mistake. There followed an in depth discussion about which shop I would buy the DVD from, and what would happen if the shop didn’t have it.
“I’ll order it on Mummy’s computer” I sighed. This was another mistake because explaining the workings of e-commerce to a five-year-old at four o clock in the morning is even less fun than his constant re-enactment of Mr Bump’s calamities.
Just as I was about to spontaneously combust, he accepted my explanation and retreated. It seemed he was appeased enough not to risk an atom bomb going off in his mothers’ bedroom. About thirty seconds later though, my bedroom door re-opened just wide enough for me to see one mischievous, gleaming eyeball and I heard the muffled whisper: “you’re the best parents in the whole world Mummy” followed by a giggle and a scampering sound that faded into the distance.
Life with Sam has definitely been an adjustment. I sometimes feel that we are just along for the ride; it’s so easy to be drawn in and swept along by him. His three older siblings have always abided by the same rules and faced the same consequences, eaten what we eat. Sam’s reaction to food is particularly severe. Every mealtime I segregate his entire plate like a military operation. There comes a point when you ask yourself when you started buying into all this nonsense, but then you only need to experience the reaction if Sam’s cucumber (the only green thing he will eat with exception of Smarties) should come into contact with his blob of ketchup. If there is so much as a microdot of substance within a mile radius of his sweet corn, it renders it completely inedible. Don’t get me started on brown chips…
I imagine suffering from autism to feel like constantly trying to fit a square peg in round hole, and being constantly frustrated that you can’t, but as any parent of an autistic child knows; it cannot be so easily encompassed. Leaving the house with him is fraught with problems. If we take an alternative route to the one that he is familiar with he becomes very anxious. He still struggles to tolerate crowds of people or unexpected loud noises. Road works, construction, vehicles reversing, and alarms all produce genuine terror. Expect frustration of epic proportions if his toy car won’t fit inside his aeroplane; a serious issue for any five-year-old to be faced with.
Sam has no sense of appropriate conduct in social situations. He cannot read signals from others such as expression, tone of voice and body language. This is particularly obvious (and sometimes worrying), when he talks to strangers. He will happily fling his arms around you if he likes the colour of your sweater. His sisters call him "the kissing fish" because he's always looking for cuddles and affection. There is a pure honesty and naivety about him that endears him to most people. These people, of course, haven’t seen him screaming, whilst turning purple, at Jamie because she hasn’t replaced his book in the correct position on his book shelf (not to be confused with the magazine shelf, God forbid!).
I often wonder how it must feel to live the way he does, to be at odds with yourself and the world around you. He doesn’t choose to be that way, he just is. I have witnessed him dig his nails into his face and arms in sheer frustration because he can’t make himself understood, and it’s heartbreaking.
As a parent you constantly question the way in which you deal with things. Self doubt is often intensified by the judgments of those around you, but realistically all you can do is take each situation as it arises and do your best to get through it with minimum trauma to all concerned. In the absence of Super Nanny or a degree in diplomacy, you have to have faith that no one knows your child better than you do, and act accordingly.
We watched with trepidation as Sam started preschool. It was immediately obvious that he’d need intervention; he was completely antisocial. For the first six months he wouldn’t even acknowledge the other children, preferring the company of adults, and was horrified at the concept of taking turns.
I can’t praise the nursery staff enough for their help and understanding during that first year. It’s not easy to have to talk about everything that isn’t perfect about your child to complete strangers, but the educational and medical professionals who we have come to depend upon have endeavoured to make the process as stress free as possible, for Sam and for us. They helped to make his initial steps into education a wonderful experience for him rather than the traumatic one it could so easily have been. Once upon a time he couldn’t even tolerate the sound of children singing, yet now he loves to sing, albeit horribly out of tune!
The next big challenge Sam faced was full time primary school. We all agreed that he wasn’t ready but the options were few. So with support and gentle integration, off he went. He has his own teaching assistant who as much as anything else makes school a less daunting place for him. He’s now in his second year and has friends of his own age. He still doesn’t cope well with large groups of people, noise, or deviations from his routine, but the progress he has made has been immense.
Sam can be the hardest work but the most amazing child; his odd perspectives, his mad ramblings and quirky personality. Just having a conversation with Sam can be both frustrating and fantastic at the same time. We’ve become accustomed to translating his fabricated words and bizarre gestures. Coming to understand the meaning of his own language is a glimpse of his private little world and to see things through his eyes can be just magical.
He was standing behind our back door recently, in the very spot where the door needed to be if I was going to open it far enough to take the rubbish out. When I asked him to move out of the way for the third time, his response was to stand bolt upright, put his index finger over his lips and whisper “Sshhh, it’s OK Mummy, I’m in thin mode”. Oh bless you Sam, if only life were that easy!
Managing Sam’s autism requires patience, understanding, and tactics! But as any parent knows; we’re only human. I often have to remind myself when he is testing me to my limits, that it is more stressful and upsetting for him to endure his own turmoil than it is for the rest of us to tolerate how it manifests itself. Three years ago I wondered if he’d ever function successfully in society but now he is thriving, albeit partially in his own little world. I’m so proud of all our children. Sometimes, on a good day, I allow myself a little pride in me too. It soon passes though, and the familiar feeling of being inches away from throttling one of them returns!
Jamie
Our ten-year-old daughter Jamie is an adult trapped in a child's mind. Not my words, but those of one of the many educational psychologists Jamie has seen over the years. She is slightly autistic; having Aspergers Syndrome and ADHD.
When I say slightly, I mean you wouldn't notice anything different about her at first. Perhaps her abruptness; alot of people think she's being rude but unfortunately whatever is in Jamie's brain tends to come out of her mouth, regardless of who she is talking to. She doesn't see why what she has to say shouldn't be equally as important as any adult's offerings, and quite often she has a point.
She has beautiful shimmering blonde hair (which she has been known to attack with scissors, much to my horror), big blue eyes, and cute freckles which pepper her cheekbones. She's tall and has huge size five feet, but she's fine with this as Grandad has told her that all the best swimmers have big feet - Thanks Dad.
Actually, thinking about it, the first thing you would notice is her weird (and dreadful) fashion sense. Not that I have one iota of fashion sense, but any reasonable person can see that she is stark raving mad when it comes to clothes. Jamie likes psychedelic patterns, clashing colours and shocking metalic creations that wouldn't have looked out of place in Dallas. She was recently choosing some socks and of all the pretty girly things; socks with characters on, pastel coloured socks etc, she instantly zoomed in on the in-your-face, coloured, striped punk socks. That's my girl.
We realised later that she already had a grey and black horizontal striped jumper, which matched one of the pairs of socks, and by coincidence she had been given some pyjama bottoms in the same stripey colours. Jamie thought this was fabulous and appeared downstairs wearing the striped jumper, bottoms, and socks and refused to accept that she looked like she'd just escaped from Broadmoor. She's like a prisoner on parole anyway, I have to check her every morning before she leaves for school to see that she isn't concealing the punk socks under her long trousers or has tried to smuggle in a phychedelic top for PE. God knows what they think of us at that school!
She has the attention span of a goldfish unless she is doing something she is really interested in, in which case it's like trying to contact an alien space ship orbitting planet Jamie. She resides there quite alot, especially when she should be doing mundane tasks such as getting dressed for school or tidying her room. What is so fascinating about her toothbrush? I have no idea; and yet every morning she can be found stood in front of the bathroom sink, staring trance-like at her Aquafresh Flex, contemplating its mythical properties.
Jamie is sassy, she says what she thinks and she's intelligent. A good thing you might think, but aside from landing herself in trouble on a regular basis, it's quite weird when you put that into the context of the sort of things a regular ten-year-old talks about. She'll jump from playground gossip - "mummy did you know that such-and-such-a-body has broken her foot?" - to "I do hope they took the correct precautions when they X-rayed it". She was watching some people move into a house on our street when she was about five. They were carrying the sofa across the road and set it down to get a better grip on it. Jamie was most indignant at this "Mummy! Those people have left a couch in the middle of the street! That will cause confusion and delay!" Confusion and delay??? May I introduce you to Jamie Lee; the youngest ever member of the local neighbourhood watch?
We have such interesting conversations with her but she can be mind-boggling. She's recently been trying her hand at our Lancashire accent. Lancashire slang, when spoken in a pure Queen's English accent is possibly one of the funniest things I've ever heard!
Despite being so colourful, Jamie still feels insecure because she has always been very aware of being different from her peers. She wasn't very sociable during her first years at school, and the other kids seemed to sense that there was something different about her. In those early years she preferred to play alone using just her imagination, but as she matured she began to crave the friendship of other kids her age. She is getting there slowly, learning to fit in and making friends. I'm so pleased for her because there were many days when I would walk past the school playground and see her sitting in a corner all alone, looking so desperately sad. On those days I wanted to scoop her up and take her home with me; somewhere safe where she knew she was loved. She has come a long way since then, still on her own planet most of the time but she now has friends who sometimes get to go there with her.
It is a shame that she is just beginning to be at peace with herself and adolescence is looming, and knowing Jamie, it will be an experience!
The reason for my following outburst (yes, this is to be an outburst) is an article in the Daily Mail:
Why can't we face the truth? Having an autistic child wrecks your life...
It was published some time ago but it has only just resurfaced on the likes of Facebook and it's the first time I've seen it, otherwise I'd have stuck my oar in ages ago. I have, along with several other people, made my feelings clear about this article on Facebook. Yes, this is an emotional response from a Mum of autistic children, but that is kinda my point. In my experience this article in no way reflects the feelings of parents of autistic children. Yes, my children are 'high functioning' so some would say that it's easy for me to say, but autism is no picnic, high functioning or not.
Surely the very nature of being a parent means your life is enriched by having children, there's no love in the world like that of a parent for a child. Are we to presume that that love is somehow diminished by autism? Or that we were cheated out of parenting a 'normal' child. I also have two non-autistic children and as anyone who reads my blog will know, they can be just as challenging at times, but my love for them is no more or less than for the others. I'm with Autism Daddy on this one; you hate the condition, but you don't think it would have been better if your child had never existed in the first place, at least I dont.
I have reposted the little I have written specifically about my childrens' autism. I would advise that if you want the real story about autism, ignore all this irresponsible reporting out there and ask someone who lives with it every day, not a 'dispassionate observer' such as Carol Sarler.
____________________________________
It’s not easy being Sam
Why is it that a child whose devout obsession is biscuits, when offered a broken one would rather starve? Everything should be whole, intact, and ideally symmetrical. The National Autistic Society estimates that approximately one percent of the UK’s population suffer from Autistic Spectrum Disorders; our five-year-old son, Sam, is one of them.
Before Sam was born my perception of autism was of Dustin Hoffman types from Rain Man, or the unruly kids labelled with ADHD because they were out of control. I admit that I was once party to the belief that what was needed was good old fashioned discipline. Then Sam came along…
He came into the world bang-on his due date weighing in at 10lbs 1oz (consequently relegating our wedding anniversary to the second priority of the day for at least the next 18 years or so). He was a placid and affectionate baby, sturdy and smiley, and such a flirt. Sam had enormous, sparkling blue eyes and the longest eyelashes I’d ever seen. He had ten fingers, ten toes and was the picture of health, we thought. As he appeared to grow even stronger it never occurred to us what vulnerability lay beneath the surface. He was about two years old when we began to realise that his “quirkiness” was a little more than that.
We started to notice his lack of eye contact during conversation, his frustration when he didn’t understand things, and his obsessive perfectionism. He began to react severely to unexpected and loud noises or crowds of people and became ridiculously picky with his food. His bedroom was immaculate; his toy cars all lined up facing the same way. He had designated drawers for Lego, building blocks, crayons etc. Weird perhaps, for a two year old, but he was so bright and happy, what could possibly be wrong? Despite Sam's challenging behaviour though, he was funny, playful, very affectionate and genuinely liked by most people who met him.
One of Sam’s recent obsessions is Mr Men, after seeing part of a DVD at a friends’ house. His obsessions are literally that; they occupy his thoughts day and night, which means whether we like it or not, they occupy our thoughts too. So it wasn’t a total shock when I was rudely awakened at four am recently, to find Sam peering at me with a look of deep concern on his face. Governed by an overwhelming desire to sleep; I gave in and promised to buy him the DVD if he went back to bed… my mistake. There followed an in depth discussion about which shop I would buy the DVD from, and what would happen if the shop didn’t have it.
“I’ll order it on Mummy’s computer” I sighed. This was another mistake because explaining the workings of e-commerce to a five-year-old at four o clock in the morning is even less fun than his constant re-enactment of Mr Bump’s calamities.
Just as I was about to spontaneously combust, he accepted my explanation and retreated. It seemed he was appeased enough not to risk an atom bomb going off in his mothers’ bedroom. About thirty seconds later though, my bedroom door re-opened just wide enough for me to see one mischievous, gleaming eyeball and I heard the muffled whisper: “you’re the best parents in the whole world Mummy” followed by a giggle and a scampering sound that faded into the distance.
Life with Sam has definitely been an adjustment. I sometimes feel that we are just along for the ride; it’s so easy to be drawn in and swept along by him. His three older siblings have always abided by the same rules and faced the same consequences, eaten what we eat. Sam’s reaction to food is particularly severe. Every mealtime I segregate his entire plate like a military operation. There comes a point when you ask yourself when you started buying into all this nonsense, but then you only need to experience the reaction if Sam’s cucumber (the only green thing he will eat with exception of Smarties) should come into contact with his blob of ketchup. If there is so much as a microdot of substance within a mile radius of his sweet corn, it renders it completely inedible. Don’t get me started on brown chips…
I imagine suffering from autism to feel like constantly trying to fit a square peg in round hole, and being constantly frustrated that you can’t, but as any parent of an autistic child knows; it cannot be so easily encompassed. Leaving the house with him is fraught with problems. If we take an alternative route to the one that he is familiar with he becomes very anxious. He still struggles to tolerate crowds of people or unexpected loud noises. Road works, construction, vehicles reversing, and alarms all produce genuine terror. Expect frustration of epic proportions if his toy car won’t fit inside his aeroplane; a serious issue for any five-year-old to be faced with.
Sam has no sense of appropriate conduct in social situations. He cannot read signals from others such as expression, tone of voice and body language. This is particularly obvious (and sometimes worrying), when he talks to strangers. He will happily fling his arms around you if he likes the colour of your sweater. His sisters call him "the kissing fish" because he's always looking for cuddles and affection. There is a pure honesty and naivety about him that endears him to most people. These people, of course, haven’t seen him screaming, whilst turning purple, at Jamie because she hasn’t replaced his book in the correct position on his book shelf (not to be confused with the magazine shelf, God forbid!).
I often wonder how it must feel to live the way he does, to be at odds with yourself and the world around you. He doesn’t choose to be that way, he just is. I have witnessed him dig his nails into his face and arms in sheer frustration because he can’t make himself understood, and it’s heartbreaking.
As a parent you constantly question the way in which you deal with things. Self doubt is often intensified by the judgments of those around you, but realistically all you can do is take each situation as it arises and do your best to get through it with minimum trauma to all concerned. In the absence of Super Nanny or a degree in diplomacy, you have to have faith that no one knows your child better than you do, and act accordingly.
We watched with trepidation as Sam started preschool. It was immediately obvious that he’d need intervention; he was completely antisocial. For the first six months he wouldn’t even acknowledge the other children, preferring the company of adults, and was horrified at the concept of taking turns.
I can’t praise the nursery staff enough for their help and understanding during that first year. It’s not easy to have to talk about everything that isn’t perfect about your child to complete strangers, but the educational and medical professionals who we have come to depend upon have endeavoured to make the process as stress free as possible, for Sam and for us. They helped to make his initial steps into education a wonderful experience for him rather than the traumatic one it could so easily have been. Once upon a time he couldn’t even tolerate the sound of children singing, yet now he loves to sing, albeit horribly out of tune!
The next big challenge Sam faced was full time primary school. We all agreed that he wasn’t ready but the options were few. So with support and gentle integration, off he went. He has his own teaching assistant who as much as anything else makes school a less daunting place for him. He’s now in his second year and has friends of his own age. He still doesn’t cope well with large groups of people, noise, or deviations from his routine, but the progress he has made has been immense.
Sam can be the hardest work but the most amazing child; his odd perspectives, his mad ramblings and quirky personality. Just having a conversation with Sam can be both frustrating and fantastic at the same time. We’ve become accustomed to translating his fabricated words and bizarre gestures. Coming to understand the meaning of his own language is a glimpse of his private little world and to see things through his eyes can be just magical.
He was standing behind our back door recently, in the very spot where the door needed to be if I was going to open it far enough to take the rubbish out. When I asked him to move out of the way for the third time, his response was to stand bolt upright, put his index finger over his lips and whisper “Sshhh, it’s OK Mummy, I’m in thin mode”. Oh bless you Sam, if only life were that easy!
Managing Sam’s autism requires patience, understanding, and tactics! But as any parent knows; we’re only human. I often have to remind myself when he is testing me to my limits, that it is more stressful and upsetting for him to endure his own turmoil than it is for the rest of us to tolerate how it manifests itself. Three years ago I wondered if he’d ever function successfully in society but now he is thriving, albeit partially in his own little world. I’m so proud of all our children. Sometimes, on a good day, I allow myself a little pride in me too. It soon passes though, and the familiar feeling of being inches away from throttling one of them returns!
Jamie
Our ten-year-old daughter Jamie is an adult trapped in a child's mind. Not my words, but those of one of the many educational psychologists Jamie has seen over the years. She is slightly autistic; having Aspergers Syndrome and ADHD.
When I say slightly, I mean you wouldn't notice anything different about her at first. Perhaps her abruptness; alot of people think she's being rude but unfortunately whatever is in Jamie's brain tends to come out of her mouth, regardless of who she is talking to. She doesn't see why what she has to say shouldn't be equally as important as any adult's offerings, and quite often she has a point.
She has beautiful shimmering blonde hair (which she has been known to attack with scissors, much to my horror), big blue eyes, and cute freckles which pepper her cheekbones. She's tall and has huge size five feet, but she's fine with this as Grandad has told her that all the best swimmers have big feet - Thanks Dad.
Actually, thinking about it, the first thing you would notice is her weird (and dreadful) fashion sense. Not that I have one iota of fashion sense, but any reasonable person can see that she is stark raving mad when it comes to clothes. Jamie likes psychedelic patterns, clashing colours and shocking metalic creations that wouldn't have looked out of place in Dallas. She was recently choosing some socks and of all the pretty girly things; socks with characters on, pastel coloured socks etc, she instantly zoomed in on the in-your-face, coloured, striped punk socks. That's my girl.
We realised later that she already had a grey and black horizontal striped jumper, which matched one of the pairs of socks, and by coincidence she had been given some pyjama bottoms in the same stripey colours. Jamie thought this was fabulous and appeared downstairs wearing the striped jumper, bottoms, and socks and refused to accept that she looked like she'd just escaped from Broadmoor. She's like a prisoner on parole anyway, I have to check her every morning before she leaves for school to see that she isn't concealing the punk socks under her long trousers or has tried to smuggle in a phychedelic top for PE. God knows what they think of us at that school!
She has the attention span of a goldfish unless she is doing something she is really interested in, in which case it's like trying to contact an alien space ship orbitting planet Jamie. She resides there quite alot, especially when she should be doing mundane tasks such as getting dressed for school or tidying her room. What is so fascinating about her toothbrush? I have no idea; and yet every morning she can be found stood in front of the bathroom sink, staring trance-like at her Aquafresh Flex, contemplating its mythical properties.
Jamie is sassy, she says what she thinks and she's intelligent. A good thing you might think, but aside from landing herself in trouble on a regular basis, it's quite weird when you put that into the context of the sort of things a regular ten-year-old talks about. She'll jump from playground gossip - "mummy did you know that such-and-such-a-body has broken her foot?" - to "I do hope they took the correct precautions when they X-rayed it". She was watching some people move into a house on our street when she was about five. They were carrying the sofa across the road and set it down to get a better grip on it. Jamie was most indignant at this "Mummy! Those people have left a couch in the middle of the street! That will cause confusion and delay!" Confusion and delay??? May I introduce you to Jamie Lee; the youngest ever member of the local neighbourhood watch?
We have such interesting conversations with her but she can be mind-boggling. She's recently been trying her hand at our Lancashire accent. Lancashire slang, when spoken in a pure Queen's English accent is possibly one of the funniest things I've ever heard!
Despite being so colourful, Jamie still feels insecure because she has always been very aware of being different from her peers. She wasn't very sociable during her first years at school, and the other kids seemed to sense that there was something different about her. In those early years she preferred to play alone using just her imagination, but as she matured she began to crave the friendship of other kids her age. She is getting there slowly, learning to fit in and making friends. I'm so pleased for her because there were many days when I would walk past the school playground and see her sitting in a corner all alone, looking so desperately sad. On those days I wanted to scoop her up and take her home with me; somewhere safe where she knew she was loved. She has come a long way since then, still on her own planet most of the time but she now has friends who sometimes get to go there with her.
It is a shame that she is just beginning to be at peace with herself and adolescence is looming, and knowing Jamie, it will be an experience!
Sunday 22 January 2012
Top 20 Hayes House phrases
1. What's going on in here?
2. Where is your other sock / shoe / glove?
3. Stop running through the kitchen!
4. Where is your brother?
5. STIIIIIG!
6. Why have you drawn on the wall / your face / your sister?
7. Please use the toilet.
8. Get down from there!
9. What have you got in your mouth?
10. QUIT IT!
11. Get off your brother / the worktop / the garage roof.
12. What do you mean he's in the ditch?
13. How many times have I asked you to stay out of your sister's room?
14. IN or OUT, one or the other...
15. Is your room tidy?
16. That's it, I'm leaving home.
17. You can go when you've eaten some salad / vegetables / anything green
18. No skating in the house!
19. Is it bedtime yet?
20. 3 bottles of wine please...
2. Where is your other sock / shoe / glove?
3. Stop running through the kitchen!
4. Where is your brother?
5. STIIIIIG!
6. Why have you drawn on the wall / your face / your sister?
7. Please use the toilet.
8. Get down from there!
9. What have you got in your mouth?
10. QUIT IT!
11. Get off your brother / the worktop / the garage roof.
12. What do you mean he's in the ditch?
13. How many times have I asked you to stay out of your sister's room?
14. IN or OUT, one or the other...
15. Is your room tidy?
16. That's it, I'm leaving home.
17. You can go when you've eaten some salad / vegetables / anything green
18. No skating in the house!
19. Is it bedtime yet?
20. 3 bottles of wine please...
Wednesday 18 January 2012
Meh!
Charlie is 4 years old now and has been out of nappies for a couple of years. The first year or so was bliss, the first time in twelve years that I didn't have a child in nappies. Then for some unexplained reason, he just started weeing himself. He's STILL doing it! He's perfectly capable of going to the toilet when he needs it, there's nothing medically wrong with him, he's dry at night and doesn't wet himself at nursery. He basically just can't be arsed to go to the loo if he's doing something more interesting. We have sticker charts and reward systems. I've tried to explain to him that he'll smell of wee if he doesn't stop doing it, not to mention the health implications, no avail. I've even had him helping me with the washing, putting his pissy pants in the machine etc, but he thinks it's marvelous and can't begin to imagine what my problem is. I know that this is a phase, and that making a big deal out of it probably won't help; blah, blah, but really, what is it with my children random acts of deviant toilet behaviour?
When Jamie was about 2 years old, potty training was in full swing and she was doing brilliantly. She was even dry at night, which I had been thoroughly impressed with. We were going on an outing to the park. This was to be the first outing without pull-ups that would last longer than a quick trip to the local shop. Jamie was totally prepared for this endeavour, she was a big girl now. We discussed it and I had told her; "Just tell Mummy if you need a wee, and we'll go behind a tree or something." This was in the days before I had learned that what is required with Jamie, are specifics.
It was a beautiful sunny afternoon. I had asked Jamie regularly if she needed to 'go' but she had been fine. We were strolling back through the park and I was chatting to Nicki who was gurgling at me from her pram. I looked up just in time to see jamie dissapear round a tree. I was about to investigate when she reappeared beaming from ear-to-ear, soaked. She'd gone 'behind a tree', stood there and pissed herself. More fool me for leaving out the bit about dropping her knickers.
Nicki struggled to be dry at night for years. It was a combination of things according to the proffessionals. There is apparently a hormone that should kick in around the age of 2-3 which stops the body from producing excess amounts of urine at night. We were told that it is quite common for this hormone to be a bit late in doing its job. This coupled with the fact that Nicki was such a deep sleeper, meant that we were still in persuit of elusive dry nights until she was 6 years old.
When it appeared that she might be 'ready' to tackle this problem, we were given an alarm. It is a good job that we have a sense of humour in this house because the whole thing was beyond farcicle. Every night we wired her up before bed. She had to wear two pairs of underwear under her pyjamas and put the 'sensor' between the two layers. One drop of moisure and the alarm was triggered. Of course the aim of this was to get her into the habit of waking up when she needed a wee, but what it in fact did was wake every other member of the household up except Nicki. This usually resulted in one of us carrying an unconcious, bleeping child through the house to the bathroom and holding her upright while she used the loo.
Having put the children to bed one evening, Stig and I were sat playing cards, when a bewildered Jamie appeared.
"Mummy, Nicki has just walked into my bedroom and weed on the floor. I've tried to talk to her but she isn't responding".
As we ascended the stairs we could hear the shrill beeping of the alarm. It transpired that Nicki had progressed to sleepwalking when she needed the loo. Unfortunately her tired little mind had directed her to the closest possible room instead of the actual bathroom, and she walked into Jamie's room, dropped her two pairs of knickers as far as the alarm wires would allow, and pissed on the floor. We found her squatting in the middle of jamies new pink, fluffy rug in a perfectly round puddle of pee.
When Jamie was about 2 years old, potty training was in full swing and she was doing brilliantly. She was even dry at night, which I had been thoroughly impressed with. We were going on an outing to the park. This was to be the first outing without pull-ups that would last longer than a quick trip to the local shop. Jamie was totally prepared for this endeavour, she was a big girl now. We discussed it and I had told her; "Just tell Mummy if you need a wee, and we'll go behind a tree or something." This was in the days before I had learned that what is required with Jamie, are specifics.
It was a beautiful sunny afternoon. I had asked Jamie regularly if she needed to 'go' but she had been fine. We were strolling back through the park and I was chatting to Nicki who was gurgling at me from her pram. I looked up just in time to see jamie dissapear round a tree. I was about to investigate when she reappeared beaming from ear-to-ear, soaked. She'd gone 'behind a tree', stood there and pissed herself. More fool me for leaving out the bit about dropping her knickers.
Nicki struggled to be dry at night for years. It was a combination of things according to the proffessionals. There is apparently a hormone that should kick in around the age of 2-3 which stops the body from producing excess amounts of urine at night. We were told that it is quite common for this hormone to be a bit late in doing its job. This coupled with the fact that Nicki was such a deep sleeper, meant that we were still in persuit of elusive dry nights until she was 6 years old.
When it appeared that she might be 'ready' to tackle this problem, we were given an alarm. It is a good job that we have a sense of humour in this house because the whole thing was beyond farcicle. Every night we wired her up before bed. She had to wear two pairs of underwear under her pyjamas and put the 'sensor' between the two layers. One drop of moisure and the alarm was triggered. Of course the aim of this was to get her into the habit of waking up when she needed a wee, but what it in fact did was wake every other member of the household up except Nicki. This usually resulted in one of us carrying an unconcious, bleeping child through the house to the bathroom and holding her upright while she used the loo.
Having put the children to bed one evening, Stig and I were sat playing cards, when a bewildered Jamie appeared.
"Mummy, Nicki has just walked into my bedroom and weed on the floor. I've tried to talk to her but she isn't responding".
As we ascended the stairs we could hear the shrill beeping of the alarm. It transpired that Nicki had progressed to sleepwalking when she needed the loo. Unfortunately her tired little mind had directed her to the closest possible room instead of the actual bathroom, and she walked into Jamie's room, dropped her two pairs of knickers as far as the alarm wires would allow, and pissed on the floor. We found her squatting in the middle of jamies new pink, fluffy rug in a perfectly round puddle of pee.
Domestic espionage
It's 9pm on a school night and Sam has been in bed for half an hour or so. He's fighting sleep so that in the morning he can claim that we put him to bed too early and that he didn't get to sleep for 'Aaaaages'. He's just about to be overcome by sleep when Nicki appears in his bedroom doorway, supposedly on her way to bed, clipboard and pen in hand.
"Name" she demands.
"Errr, Sam" he answers, sitting up on his top bunk and rubbing his eyes.
Nicki's pen stops dead on her makeshift clipboard and she rolls her eyes.
"FULL name" demands an exasperated Nicki, she's clearly dealing with the biggest imbecile she's ever come across.
"Samuel Hayes" He answers, rather pleased with himself.
"Gender?"
"Uuh?" the self-satisfaction is replaced with confusion in an instant.
"Boy or girl?"
"Oh, boy"
"Siblings... Brothers and sisters?"
"Yes" he replies....
There procceeded a full inventory of the Hayes family members until we intervened and sent them both packing back to bed.
I wouldn't know about exchanges such as these if it wasn't for my secret weapon. Not a baby monitor or security camera, but a Doof. What is a Doof you may ask? Well I think every household should have one. Doof, aka Sophie, is Stig's eldest daughter who has lived with us for just over two years now. She's become 'Doof' because when Sam was little he couldn't say Sophie and he used to call her Doofie. It stuck in the way things like that do, the majority of Hayes House don't get to be called by their real names, that would be far too easy.
Anyway, our house is somewhat tiny, and Stig and I reside in the small 'granny flat' extension on the side of our house, which means our bedroom is downstairs. So Doof is my eye-in-the-sky when it comes to overhearing random conversations that the kids have freely, safe in the knowledge that there are no parents in the vicinity. They kind of think she's one of them, which is great for us.
Nicki and Jamie cannot tidy their room together without all out war. It's the only thing that is absolutely guaranteed to cause a major falling out between them.
Nicki - "Your so lazy and selfish! I'm telling Mum and Dad!"
Jamie - *Sigh... "Whatever..." She's not remotely arsed by this prospect.
Nicki - "FINE!" (it clearly isn't fine because by now she's catatonic and screaming at Jamie)
"I'm calling the cops and 30 men will be here in 10 minutes!"
Jamie - (Bored with Nicki's outburst but slightly concerned about the prospect of half the local constabulary arriving at our door en mass)
"Can't you just tell Mum and Dad?"
"Name" she demands.
"Errr, Sam" he answers, sitting up on his top bunk and rubbing his eyes.
Nicki's pen stops dead on her makeshift clipboard and she rolls her eyes.
"FULL name" demands an exasperated Nicki, she's clearly dealing with the biggest imbecile she's ever come across.
"Samuel Hayes" He answers, rather pleased with himself.
"Gender?"
"Uuh?" the self-satisfaction is replaced with confusion in an instant.
"Boy or girl?"
"Oh, boy"
"Siblings... Brothers and sisters?"
"Yes" he replies....
There procceeded a full inventory of the Hayes family members until we intervened and sent them both packing back to bed.
I wouldn't know about exchanges such as these if it wasn't for my secret weapon. Not a baby monitor or security camera, but a Doof. What is a Doof you may ask? Well I think every household should have one. Doof, aka Sophie, is Stig's eldest daughter who has lived with us for just over two years now. She's become 'Doof' because when Sam was little he couldn't say Sophie and he used to call her Doofie. It stuck in the way things like that do, the majority of Hayes House don't get to be called by their real names, that would be far too easy.
Anyway, our house is somewhat tiny, and Stig and I reside in the small 'granny flat' extension on the side of our house, which means our bedroom is downstairs. So Doof is my eye-in-the-sky when it comes to overhearing random conversations that the kids have freely, safe in the knowledge that there are no parents in the vicinity. They kind of think she's one of them, which is great for us.
Nicki and Jamie cannot tidy their room together without all out war. It's the only thing that is absolutely guaranteed to cause a major falling out between them.
Nicki - "Your so lazy and selfish! I'm telling Mum and Dad!"
Jamie - *Sigh... "Whatever..." She's not remotely arsed by this prospect.
Nicki - "FINE!" (it clearly isn't fine because by now she's catatonic and screaming at Jamie)
"I'm calling the cops and 30 men will be here in 10 minutes!"
Jamie - (Bored with Nicki's outburst but slightly concerned about the prospect of half the local constabulary arriving at our door en mass)
"Can't you just tell Mum and Dad?"
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