Hey Folks
Sorry I've been a bit quiet for a while. Not really been feeling in a bloggy frame of mind recently, and have been very busy with the shift in our routine that's resulted from William starting school full time back in September.
There hasn't really been much to report up to now, he seems to be doing pretty well, he's settled with his new classmates, but I've no idea who his classmates are. Last year we picked him up from school as he was on half days, but now he's full time the transport bus picks up and drops him off for us, so we have less regular contact with school. There are now 19 children in Early Learners (compared to 9 last year), so there are 2 teachers and several teaching assistants.
One issue with starting school is his fussy eating. He can take or leave food (unless its haribos or cake) he prefers to graze and will often turn down meals at home and elsewhere. I've been told he usually chooses sandwiches, and I can bet your arse he's picking the fillings out and whizzing them or wiping them on someone elses jumper. I thought that being on school dinners might have encouraged him to eat a variety of foods but he's playing safe so far. I'm not too worried for now. I try different foods on his plate at home and always get the look of disgust where vegetables are concerned.
At school he seems like the perfect pupil. He does as he's told, when supported. He sits down, doesn't run off, will have nappy changed without issue. Basically the opposite to whatever he's like at home. He enjoys music and has been learning to sing. In fact, he's been singing today, the Hello song. He sang it about 50 times today (no exaggeration) one after the other. It really hurt my brain but I had to put on a brave face and say "Yay well done William" After. Every. Bloody. Song.
Sleeping is still a major issue. "Oh he'll sleep better when he's full time" I'm told. Ho ho ho I think not. If anything it's worse. He's pretty exhausted after a full day of mooching and learning, which can result in passing out on the couch while Dad makes tea. Then anything over 30 seconds of shut eye can guarantee he'll be up till late as he recharges his batteries with his micro nap. He has learned how to say "Morning" though, and will come into my room in the morning and climb on me, occasionally sitting on my throat whilst doing it. Wakes me up anyway.
October saw the little munchkin turn 5! 5! My god, no longer a baby. 2 and a half years since our diagnosis, and what a long way we've come and what fabulous people we've met on the way. It almost seems like the dark days are a distant memory, and perhaps I've truly accepted the life we have now. Autism doesn't faze me much any more. I don't even think about it. In the past I may have excused his behaviour because of his autism, or I may have even gone around telling folks about it so that they may understand why he squeaks or flaps or barges unsuspecting small children out of the way to get to the slide. I find I don't really do that anymore unless someone asks or tries to talk to him and he can't respond.
I digress. Birthdays! William doesn't really get the idea of birthdays yet, but this is the first year he's taken notice and has really enjoyed it. We didn't wrap all of his presents, he hasn't quite figured out the whole unwrapping thing, but his face when he saw all of his new stuff set up on his birthday morning was a picture. He even had a smile when we all sang happy birthday to him at our family tea party. I think it was clear to us that William is very different to his brother when it comes to things like this. His brother Alex (7) likes tat. Small crap tat. The more small crap tat the better. He would be overwhelmed with a bathful of cheap small plastic crap tat. The sort of crap tat that you "accidentally throw away" when they're at school cos you're sick of seeing it shoved down the couch or floating in your coffee year after year. It'll probably be worth something in a few years and i'll be crying into my Asda smart price sherry.
William prefers good stuff, quality workmanship! So it tends to be quality rather than quantity. He doesn't have fads like his brother, apart from Iggle Piggle, which may remain a favourite for life. I hope not, there's only so many recitals of Iggle Piggle episodes that I can cope with. This year he got lego, a big crane set to go with his wooden train track, and a scooter. And he loves it all. I'm glad we managed to upgrade the scooter from his little toddler scooter. He has some deep attachments to his old stuff so I thought the change in scooter might have been an issue, but he was bent over the old one like a little old man so it definitely needed to go! Its gone to a good home (its been given to his school for the little ones to use). I'm hoping he doesn't see it and try to being it home again......
Today we had a lovely trip to soft play with some of Williams school chums. I didn't organise a proper party as he's not really into the novelty aspect of that, he doesn't play party games and woe betide if someone shouts over a tannoy that he has to come off the equipment for something so mediocre as food. It was a bloody amazing morning, and the first time that I have seen William actively seek the company of a particular child, a lovely young chap who is in his class, who shall be known as "J". Admittedly I got all blubby when I saw them together, William shouting to J to come on the slide. Seeing William open doors in the soft play so he could get through. Its hard to explain that feeling in your heart when you see that your child has a friend, a "proper" friend, and they really seem to be friends. I've waited so long to see William connect with someone like that, and friendship/companionship is something I've always desperately wanted for him. And now it looks like he's developing that skill. Blub. Again
It was fabulous to see the other kids playing too. They were all kids either in his class or who he was in class with last year, and all awesome :D We had arranged to come early just after opening, so it would be nice and quiet. Some parents, me included, feel like trips to soft play or wherever can be daunting when you're worrying about what your kids might get up to, if they'll cope, whether they're going to chuck balls at other people. William nearly pinched a swing ball thing off a little girl and she was most unimpressed. Eek. But they all seemed to have a great time, whether they played with others or just did their own thing. It's given me the confidence to attempt other places in future and perhaps not hide away in my own little bubble so much. Alex had a good play too with his buddy and everyone was happy and relaxed.
There can be a darker side to outings. Sometimes things can go a bit wrong, and that's where we need the understanding and patience off other folk to help us deal with it. Our kids might lash out through misunderstanding or distress. Sometimes other kids get too close and get bumped by accident, perhaps if personal space is an issue. That's not to say that we don't reprimand our kids when they do wrong, cos we do. William can be a sodbag when he wants to be, but I don't let him get away with it. I call Dad instead and he deals with it :P We do need understanding though, and don't need to be told that our kids are out of control or being badly behaved. Cos the majority of the time that really isn't the case, and being given the evils from other parents just makes our life difficult, possibly even making it harder for us to want to come out again.
All kids have a right to play, special needs or not :)
* Laptop battery is dying now so I'll sign off and hope there aren't too many spelling mistakes! *
Oh look! The Pontipines are hogging the slide!
Sunday 18 October 2015
Sunday 23 August 2015
Haven Holidays!
Hello Peoples!
Well tonight is the last night before I go back to work after a week off, with 4 nights spent at Haven near Blackpool with the boys and my Mum and Dad. Jesus Christ what an experience that was!
It takes a lot of planning to go on holiday at the best of times, but when you're bringing your own little sumo wrestler with autism, you need to think ahead. So not a case of how many clothes to bring, its have I got the right kind of clothes for William. He's currently refusing to wear a lot of stuff, so a quick dash to Asda gets me a 3 pack of plain-ish tshirts and me praying at the till that he'll actually wear them. Which he did thankfully.
Do I need his precious blankies? Will he sleep without them? Will he sleep in the duvet cover they provide? Will he sleep in the bedroom there in the caravan? Will he actually get INTO the caravan? Christ I never thought of that. Praying again as I pack the stuff in the bloody case and trying not to think about the possibility of me being seen stuffing a screaming small child up the steps of a caravan and the subsequent police presence.
No Ipads or tablets allowed on this trip. Good idea? Not just because I wanted him to enjoy his trip without computer games, but because I'd like to avoid the costs of repairs should he decide to fling the thing into the caravan windows when Igglepiggle fails to load on YouTube. DVDs instead then. Which was almost a disaster as I got the Igglepiggle DVD jammed in the DVD player.
The boys enjoyed the drive to Blackpool with Grandma and the usual "Oh look there's the tower! Oh silly me its a pylon" x50. William just enjoyed the scenery flinging past his eyes, he seems to quint and look at his surroundings at different angles, which is quite cute to watch and I always wonder what he's really thinking.
We visited Blackpool zoo before we booked in, Alex loves the zoo. William wasn't too bothered about the animals as usual and just pottered about happily and smearing ice cream all over himself.
When walking about we often have to steer him around objects and people, it's like he doesn't really notice they're there. Either that or he really doesn't give two stuffs about what's in his way. I've not decided which yet but knowing William probably the latter. It was a busy day at the zoo and when William starts to repeat words or phrases its a sign that he's not feeling right and its time to go. Alex chose some souvenirs from the shop and off we went to the caravan.
The caravan itself was lovely, quite spacious and William was in his element as he ran about opening doors and shutting them. He loves shower screens, shame he won't get into a bloody shower though. He was happy in the bedroom that Alex chose for them, but i had visions of him blowing up the caravan by switching the heating on and off, but thankfully that never happened.
There were plenty of activities at the holiday park, but as most of these you had to pay for, it wasn't worth trying it. William doesn't usually enjoy set activities, instead choosing to do what he wants and when he wants to. Alex wasn't particularly bothered either, so we spent a lot of time outside of the camp. One thing William did enjoy is putting 2ps in the arcade machines, which proved bloody expensive but he asks for very little.
We spent a day in Blackpool itself, shopping for treats and seeing the beach and tower. It was here that William was most difficult. Having absolutely no sense of danger makes mooching around quite stressful. Its a constant cycle of directing him out of the path of people, grabbing his arm to prevent him going in the road or meandering towards the path of an oncoming tram.
I would consider getting a special needs buggy, but i'm not sure if he would even get into one now as its been so long since he was in a buggy. He certainly wouldn't tolerate reins or a harness. A special needs buggy is an expensive piece of kit though, and second hand ones are snapped up pretty quick. It may have to be a real option though if this continues. Its pretty terrifying, and you really do need eyes at the back of your head. Its stressful and tiring and you can't relax. At least in the zoo it was all contained and safe, although I did consider throwing him over a fence and swapping him for an aardvark.
This is where having the Grandparents comes in handy (as escorts, not for swapping children with aardvarks). Quite often when walking on the promenade, William would dawdle along at snails pace, and Grandad would dawdle alongside him and everyone was happy. I got some quality time with Alex which is so lacking at home due to the high level of adult support that William needs, so we could talk, look at birds on the beach, collect shells etc. That was pretty peaceful :)
Another place where extra hands are handy is in the pool. William is a proper water-baby. He loves everything about swimming. But with that comes his total lack of fear in water, and his insistence of being in the deep end. He has no problem with not putting his feet down, and went under a couple of times as he struggled out of our arms. So another thing on my shopping list is for a large swim ring that he can lounge in, stay in the deep end and still be safe.
One particular notable event was the infamous trip to Stanley Park. We had a lovely morning on the park there, a nice little trip on the Thomas train to the boating lake, and watched Alex and Daddy floating about on the Swan pedal boat (that was a sight!). At this point William is grumpy and tired, and has a big strop on, flinging himself on the floor (nearly getting run over by a sour-faced miserable old cow on a bike to whom I gave an equally sour look). We took the Thomas train back to the park and I foolishly decided to let him have a go on the inflatable slide. Little did I know that there was a ticket system, and we had to WAIT. Bloody hell. Many people with autism find it really difficult to wait, and William is no exception. And we knew it. And so did every person at the park. He could not understand why he couldn't get on that slide right then, so had a full blown meltdown for 10 minutes while we waited our turn. No distractions could console him, it sounded like he was being throttled, and some of the other parents waiting probably wished he would have been. It was my first proper experience of a public meltdown, and it was embarrassing, but I know this won't be the last time and I need to get a thicker skin. It happens, and yeah, to an outsider it would have looked like he was being a shit, but he wasn't. He was genuinely heartbroken until the moment he was allowed on the slide, at which point all was well. Except William is so slow getting up the bloody slide he was holding everyone back so we had to keep shouting at him to get his arse in gear and he only had 5 minutes.
It was a good learning experience really. I know what I can get away with and what I can't. I know what William will tolerate and what he can't. I know what might trigger his meltdowns and possibly avoid those situations. I know that I won't be cursed by refusing to buy lucky heather on the seafront. And I know that I need more clothes packing because Haven charged £7.50 for a wash and dry. Daylight robbery!
All in all it was a wonderful few days away, but I feel that it would be difficult to do this without without the extra pairs of hands from my Mum and Dad. That provided us with some much needed time with each of the boys in turn, and a bit of time to ourselves in the morning too, as the boys gravitated towards Grandma and Grandads room instead of ours :D
If you ever do see someone having a breakdown in public, maybe at the park or when waiting for something, particularly at themeparks, then bear in mind it may be someone with autism. Some attractions offer fast track passes for disabled people who find it difficult to queue, so don't whinge and say "oh they don't look disabled", it might be someone with autism, and its really hard for them and their families, so don't judge. And don't give me sour looks as you nearly run over my child with a bike, cos I'll shove my umbrella in your spokes and then you'll have a reason to be sour.
Don't forget your armbands Wottingers!
Well tonight is the last night before I go back to work after a week off, with 4 nights spent at Haven near Blackpool with the boys and my Mum and Dad. Jesus Christ what an experience that was!
It takes a lot of planning to go on holiday at the best of times, but when you're bringing your own little sumo wrestler with autism, you need to think ahead. So not a case of how many clothes to bring, its have I got the right kind of clothes for William. He's currently refusing to wear a lot of stuff, so a quick dash to Asda gets me a 3 pack of plain-ish tshirts and me praying at the till that he'll actually wear them. Which he did thankfully.
Do I need his precious blankies? Will he sleep without them? Will he sleep in the duvet cover they provide? Will he sleep in the bedroom there in the caravan? Will he actually get INTO the caravan? Christ I never thought of that. Praying again as I pack the stuff in the bloody case and trying not to think about the possibility of me being seen stuffing a screaming small child up the steps of a caravan and the subsequent police presence.
No Ipads or tablets allowed on this trip. Good idea? Not just because I wanted him to enjoy his trip without computer games, but because I'd like to avoid the costs of repairs should he decide to fling the thing into the caravan windows when Igglepiggle fails to load on YouTube. DVDs instead then. Which was almost a disaster as I got the Igglepiggle DVD jammed in the DVD player.
The boys enjoyed the drive to Blackpool with Grandma and the usual "Oh look there's the tower! Oh silly me its a pylon" x50. William just enjoyed the scenery flinging past his eyes, he seems to quint and look at his surroundings at different angles, which is quite cute to watch and I always wonder what he's really thinking.
We visited Blackpool zoo before we booked in, Alex loves the zoo. William wasn't too bothered about the animals as usual and just pottered about happily and smearing ice cream all over himself.
When walking about we often have to steer him around objects and people, it's like he doesn't really notice they're there. Either that or he really doesn't give two stuffs about what's in his way. I've not decided which yet but knowing William probably the latter. It was a busy day at the zoo and when William starts to repeat words or phrases its a sign that he's not feeling right and its time to go. Alex chose some souvenirs from the shop and off we went to the caravan.
There were plenty of activities at the holiday park, but as most of these you had to pay for, it wasn't worth trying it. William doesn't usually enjoy set activities, instead choosing to do what he wants and when he wants to. Alex wasn't particularly bothered either, so we spent a lot of time outside of the camp. One thing William did enjoy is putting 2ps in the arcade machines, which proved bloody expensive but he asks for very little.
We spent a day in Blackpool itself, shopping for treats and seeing the beach and tower. It was here that William was most difficult. Having absolutely no sense of danger makes mooching around quite stressful. Its a constant cycle of directing him out of the path of people, grabbing his arm to prevent him going in the road or meandering towards the path of an oncoming tram.
I would consider getting a special needs buggy, but i'm not sure if he would even get into one now as its been so long since he was in a buggy. He certainly wouldn't tolerate reins or a harness. A special needs buggy is an expensive piece of kit though, and second hand ones are snapped up pretty quick. It may have to be a real option though if this continues. Its pretty terrifying, and you really do need eyes at the back of your head. Its stressful and tiring and you can't relax. At least in the zoo it was all contained and safe, although I did consider throwing him over a fence and swapping him for an aardvark.
This is where having the Grandparents comes in handy (as escorts, not for swapping children with aardvarks). Quite often when walking on the promenade, William would dawdle along at snails pace, and Grandad would dawdle alongside him and everyone was happy. I got some quality time with Alex which is so lacking at home due to the high level of adult support that William needs, so we could talk, look at birds on the beach, collect shells etc. That was pretty peaceful :)
Another place where extra hands are handy is in the pool. William is a proper water-baby. He loves everything about swimming. But with that comes his total lack of fear in water, and his insistence of being in the deep end. He has no problem with not putting his feet down, and went under a couple of times as he struggled out of our arms. So another thing on my shopping list is for a large swim ring that he can lounge in, stay in the deep end and still be safe.
One particular notable event was the infamous trip to Stanley Park. We had a lovely morning on the park there, a nice little trip on the Thomas train to the boating lake, and watched Alex and Daddy floating about on the Swan pedal boat (that was a sight!). At this point William is grumpy and tired, and has a big strop on, flinging himself on the floor (nearly getting run over by a sour-faced miserable old cow on a bike to whom I gave an equally sour look). We took the Thomas train back to the park and I foolishly decided to let him have a go on the inflatable slide. Little did I know that there was a ticket system, and we had to WAIT. Bloody hell. Many people with autism find it really difficult to wait, and William is no exception. And we knew it. And so did every person at the park. He could not understand why he couldn't get on that slide right then, so had a full blown meltdown for 10 minutes while we waited our turn. No distractions could console him, it sounded like he was being throttled, and some of the other parents waiting probably wished he would have been. It was my first proper experience of a public meltdown, and it was embarrassing, but I know this won't be the last time and I need to get a thicker skin. It happens, and yeah, to an outsider it would have looked like he was being a shit, but he wasn't. He was genuinely heartbroken until the moment he was allowed on the slide, at which point all was well. Except William is so slow getting up the bloody slide he was holding everyone back so we had to keep shouting at him to get his arse in gear and he only had 5 minutes.
It was a good learning experience really. I know what I can get away with and what I can't. I know what William will tolerate and what he can't. I know what might trigger his meltdowns and possibly avoid those situations. I know that I won't be cursed by refusing to buy lucky heather on the seafront. And I know that I need more clothes packing because Haven charged £7.50 for a wash and dry. Daylight robbery!
All in all it was a wonderful few days away, but I feel that it would be difficult to do this without without the extra pairs of hands from my Mum and Dad. That provided us with some much needed time with each of the boys in turn, and a bit of time to ourselves in the morning too, as the boys gravitated towards Grandma and Grandads room instead of ours :D
If you ever do see someone having a breakdown in public, maybe at the park or when waiting for something, particularly at themeparks, then bear in mind it may be someone with autism. Some attractions offer fast track passes for disabled people who find it difficult to queue, so don't whinge and say "oh they don't look disabled", it might be someone with autism, and its really hard for them and their families, so don't judge. And don't give me sour looks as you nearly run over my child with a bike, cos I'll shove my umbrella in your spokes and then you'll have a reason to be sour.
Don't forget your armbands Wottingers!
Monday 3 August 2015
Relax, or not to relax
I'm sorry its been a while since I last posted. Time seems to be flying by, and being a working parent is tough enough without a big dollop of autism in the middle of it.
The school holidays are in full swing, and Si seems to be coping well with the boys being at home. The house is still standing, all pets and humans still unscathed, albeit with an annoying camp of flying ants which seem to have decided to lodge in the walls. Me, I've not been doing do well. I find being a working parent hard, and coming home to the William's behaviour hard to deal with, which I feel pretty guilty about some days.
I'm usually jumped upon straightaway, with William keen to remove my coat the split second I pass through the door, and he gets very worked up if I do not comply. At the moment he is very repetitive, and hundreds of times a day will repeat phrases from Iggle Piggle, from first thing at morning till last thing at night. His speech is very limited at the moment but I know its just a phase but its mentally draining. He has also become pretty naughty this last month or so, and we are working hard on discipline. But how do you discipline a child with autism that *potentially* doesn't really understand what you're asking?
Well that doesn't apply to William at the moment as he knows EXACTLY what he's doing, as he tries to give me a good kicking in the face whilst I try and change his nappy. If he bloody well started using the toilet I wouldn't need to change his nappy! I've told him that but he really doesn't get it.
William's favourite phrase at the moment is "In a minute".
Change bum William! "In a minute!"
Choose your dinner William! "In a minute"
Bath time William! "In a minute".
So we now use a digital timer.
The theory: We set the timer for that one minute and verbally count down from 10 seconds. After that minute, he has to do what he's been told to. Simple eh?
The reality: The timer pisses William off BIG time. Which I guess is a good thing, cos if he doesn't like it, maybe it might make him realise he should do what he's told the first time. Usually he tries to feck off and escape somewhere, and we have to go chasing him round the house with a nappy/facecloth or whatever it is he's trying to get away with not doing. And then he'll say "In. A. Min. Ute."
Now that you can't blame on the autism, its just him being a little gitbag.
We've bought extra timers, cos you can guarantee one of them will end up lodged up my nostrils one day, I don't think it'll be long.
It's not been the best few weeks, I've been stressed out, and have needed to switch off in the evenings to regain some composure.
The theory: A daily soak in the bath, with a fat cuppa, to steady my nerves, calm down after work and gain a bit of energy for the evening before the midnight wakenings.
The reality: my daily soak in the bath is usually interrupted by a little body coming in to have a dump and asking me if I can smell the farts. And then by another little body who thinks its fun to grab the jug and waterboard me whilst I relax. Or keep running the taps. Or playing with the bogroll. Or opening/shutting doors. Or telling me Iggle Piggle has lost his blanket. So basically not stress-relieving whatsoever.
Another theory: Taking the little muttbag for a lovely long walk, frolicking in fields together, splashing in puddles and having a jolly lovely time.
The reality: Sneaking out as quietly as possible to avoid William being aware of my intentions (and thus avoiding WW3), walking with the pooch, no, STANDING with the pooch while she sniffs and pees at every single lamppost/bin/brick, making it just 10 yards in half an hour. She enjoys it anyway.
Its hard. I don't mind admitting its hard. Some people seem to find being a parent a breeze. I'm just not one of them. I cry over it, I think I'm hard done by some days, and find it hard to see the positives in my life. I don't think I suck too much, but I am a pretty grumpy mum some days.
When i'm finding life tough, I barely see beyond autism and the difficulties it brings to our family, and have a little blub or big blub depending on the degree of blubworthy miserableness and need for chocolate. Then sometimes something comes along that really turns things around.
I've had that this week, and the cheer came in the form of photographs taken at a recent photoshoot. More about that next time, but I'll leave you with one of my favourites, and if I'm having a bad time, I'll look back on this and think just how bloody lucky and blessed I really am.
In. A. Min. Ute. Wottingers.
The school holidays are in full swing, and Si seems to be coping well with the boys being at home. The house is still standing, all pets and humans still unscathed, albeit with an annoying camp of flying ants which seem to have decided to lodge in the walls. Me, I've not been doing do well. I find being a working parent hard, and coming home to the William's behaviour hard to deal with, which I feel pretty guilty about some days.
I'm usually jumped upon straightaway, with William keen to remove my coat the split second I pass through the door, and he gets very worked up if I do not comply. At the moment he is very repetitive, and hundreds of times a day will repeat phrases from Iggle Piggle, from first thing at morning till last thing at night. His speech is very limited at the moment but I know its just a phase but its mentally draining. He has also become pretty naughty this last month or so, and we are working hard on discipline. But how do you discipline a child with autism that *potentially* doesn't really understand what you're asking?
Well that doesn't apply to William at the moment as he knows EXACTLY what he's doing, as he tries to give me a good kicking in the face whilst I try and change his nappy. If he bloody well started using the toilet I wouldn't need to change his nappy! I've told him that but he really doesn't get it.
William's favourite phrase at the moment is "In a minute".
Change bum William! "In a minute!"
Choose your dinner William! "In a minute"
Bath time William! "In a minute".
So we now use a digital timer.
The theory: We set the timer for that one minute and verbally count down from 10 seconds. After that minute, he has to do what he's been told to. Simple eh?
The reality: The timer pisses William off BIG time. Which I guess is a good thing, cos if he doesn't like it, maybe it might make him realise he should do what he's told the first time. Usually he tries to feck off and escape somewhere, and we have to go chasing him round the house with a nappy/facecloth or whatever it is he's trying to get away with not doing. And then he'll say "In. A. Min. Ute."
Now that you can't blame on the autism, its just him being a little gitbag.
We've bought extra timers, cos you can guarantee one of them will end up lodged up my nostrils one day, I don't think it'll be long.
It's not been the best few weeks, I've been stressed out, and have needed to switch off in the evenings to regain some composure.
The theory: A daily soak in the bath, with a fat cuppa, to steady my nerves, calm down after work and gain a bit of energy for the evening before the midnight wakenings.
The reality: my daily soak in the bath is usually interrupted by a little body coming in to have a dump and asking me if I can smell the farts. And then by another little body who thinks its fun to grab the jug and waterboard me whilst I relax. Or keep running the taps. Or playing with the bogroll. Or opening/shutting doors. Or telling me Iggle Piggle has lost his blanket. So basically not stress-relieving whatsoever.
Another theory: Taking the little muttbag for a lovely long walk, frolicking in fields together, splashing in puddles and having a jolly lovely time.
The reality: Sneaking out as quietly as possible to avoid William being aware of my intentions (and thus avoiding WW3), walking with the pooch, no, STANDING with the pooch while she sniffs and pees at every single lamppost/bin/brick, making it just 10 yards in half an hour. She enjoys it anyway.
Its hard. I don't mind admitting its hard. Some people seem to find being a parent a breeze. I'm just not one of them. I cry over it, I think I'm hard done by some days, and find it hard to see the positives in my life. I don't think I suck too much, but I am a pretty grumpy mum some days.
When i'm finding life tough, I barely see beyond autism and the difficulties it brings to our family, and have a little blub or big blub depending on the degree of blubworthy miserableness and need for chocolate. Then sometimes something comes along that really turns things around.
I've had that this week, and the cheer came in the form of photographs taken at a recent photoshoot. More about that next time, but I'll leave you with one of my favourites, and if I'm having a bad time, I'll look back on this and think just how bloody lucky and blessed I really am.
In. A. Min. Ute. Wottingers.
Tuesday 7 July 2015
Looking Back
Its almost been a whole year since William started at New Greenhall school. I remember the first days, worrying about what was ahead, would he settle with new people? Would he fit in? How would he cope with taking the bus to school? "He's too young to get on a school bus all by himself!" I remember bleating to Daddy.
We have received William's school report for the end of his first year, and as usual I prepare myself for the "report blub" which inevitably happens whenever I read things about his progress or needs, as its often daunting or upsetting. It was a great read though, detailing how much he loves school and the fantastic progress he's made this year. He is making three word sentences using PECs (cheeky git won't do that at home). Please and thankyou without prompts (cheeky git won't do that at home). Follows simple instructions straight away (cheeky git wont.... hang on there's a pattern here!).
He's very comfortable with physical things, as evidenced by the terrifying pictures sent in his schoolbag of him up a climbing wall, requiring me to down several sherries to steady my nerves after viewing.
Many things that he does in a school environment he will not do at home. We find it difficult to engage him a lot of the time, we certainly can't get him to have his face painted or wear a red nose for comic relief day. I can't even get him in his bloody school uniform, yet school have him dressed up like a star for the Christmas play, complete with tinsel halo. He did look like a slightly embarrassed (possibly traumatised) star but a very cute traumatised star at that.
At parents evening today the staff commented on how well he had matured and grown in confidence since he started. We learned that when he comes into school he will say the names of the other children as they follow him in. I've never heard William say the name of any other children at home, its as if what happens at school, stays in school, like its 2 completely separate entities for him. Which is a shame, because I love to listen to what the kids get up to. Its taken Alex to get to Year 2 for him to actually tell me what he does, up to that point it was "don't know" or "can't remember". I'd love to hear what William is involved in too.
I find it a bit sad sometimes, as school obviously get to see a side to William that I have yet to see. He loves to choose stories, he's never really done that with me and gets cross if I try and read to him. He loves to sing, again that's rare with me. I feel like I'm missing out. Apparently he enjoys anticipating what is going to happen next in a story, which the TA says is something that would usually happen at an older age which is pretty cool. Maybe he's got a great imagination. Maybe he'll one day write books about the Pontipines really being aliens and abducting Iggle Piggle, leaving secret codes in Upsy Daisys bed, which can only be revealed using Makka Pakkas sponge. Ok maybe I'm getting too excited. You never know. Maybe he'll be a rugby player, he's not soft enough for a footballer. Perhaps a shotputter, he flings the ipad hard enough.
William responds well to prompts at school, and music is often used to indicate the time of day at school, for example a song from Peter Pan is used to indicate that it's tidy up time, and he always cooperates. <Frantically searching for the bloody song on YouTube in the hope of a tidy house> I think I need a specific bedtime song because he's still swinging off the lampshade full of beans and its nearly 9pm. I may have to incorporate these techniques at home over the summer, then perhaps my blood pressure may go down. I may even.... get some sleep......
One of the most important parts of his report was the following phrase :
"He interacts in a small group of friends and actively seeks their company". Still gets me all tearry eyed now and I've had the report for a week. In the beginning when I was starting to process this whole autism thing, I found it really difficult to think that William might never really have a friendship or someone to love. I mean, to him, it might never have been important anyway. But to think of him being a loner (by choice or otherwise) was something I found deeply troubling. Seeing the early stages of forming relationships and friendships is really amazing, and encouraging that perhaps he will truly be happy in the long term.
I am eternally grateful to those people who have been involved with our family in this pivotal year. From the charities that have supported us in whatever way - Breaking Barriers North West, Love Autism in the North West, Blessings in Disguise, Embrace.
All the staff at Williams school, who have made such a difference in our little mans life and ours.
All our friends who have stuck by us and have been so understanding of my cancelled playdates when I've struggled. I know I don't see you all often enough but we're starting to really get somewhere now and I shall be pestering you all soon.
All the NEW friends! Without our exchange of stories of food theft, streaking, nappy accidents and teaching our children (accidentally) to swear, this journey would be so difficult.
All the family, who always try their hardest to include William even when its difficult, and treat him like any other pain in the arse 4.5 year old.
To Simon (Daddy) who gets me through the bad times with reasoning, hugs, coffee and peanut butter ice cream.
To Alex, the best big dude ever, who despite being under the cloud today for crossing a room by standing on furniture, is probably the biggest bundle of fun ever (squeezed in a tiny body with an enormous gob).
To William - the best little dude ever, who has taught me a lot about sominex, coffee tolerance and how amazing it is to be a little bit different.
To my dog Nibbler, who copes with being squished, chucked off the couch and trodden on, my best furry friend.
Love you all.
In a minute Wottingers!!
We have received William's school report for the end of his first year, and as usual I prepare myself for the "report blub" which inevitably happens whenever I read things about his progress or needs, as its often daunting or upsetting. It was a great read though, detailing how much he loves school and the fantastic progress he's made this year. He is making three word sentences using PECs (cheeky git won't do that at home). Please and thankyou without prompts (cheeky git won't do that at home). Follows simple instructions straight away (cheeky git wont.... hang on there's a pattern here!).
He's very comfortable with physical things, as evidenced by the terrifying pictures sent in his schoolbag of him up a climbing wall, requiring me to down several sherries to steady my nerves after viewing.
Many things that he does in a school environment he will not do at home. We find it difficult to engage him a lot of the time, we certainly can't get him to have his face painted or wear a red nose for comic relief day. I can't even get him in his bloody school uniform, yet school have him dressed up like a star for the Christmas play, complete with tinsel halo. He did look like a slightly embarrassed (possibly traumatised) star but a very cute traumatised star at that.
At parents evening today the staff commented on how well he had matured and grown in confidence since he started. We learned that when he comes into school he will say the names of the other children as they follow him in. I've never heard William say the name of any other children at home, its as if what happens at school, stays in school, like its 2 completely separate entities for him. Which is a shame, because I love to listen to what the kids get up to. Its taken Alex to get to Year 2 for him to actually tell me what he does, up to that point it was "don't know" or "can't remember". I'd love to hear what William is involved in too.
I find it a bit sad sometimes, as school obviously get to see a side to William that I have yet to see. He loves to choose stories, he's never really done that with me and gets cross if I try and read to him. He loves to sing, again that's rare with me. I feel like I'm missing out. Apparently he enjoys anticipating what is going to happen next in a story, which the TA says is something that would usually happen at an older age which is pretty cool. Maybe he's got a great imagination. Maybe he'll one day write books about the Pontipines really being aliens and abducting Iggle Piggle, leaving secret codes in Upsy Daisys bed, which can only be revealed using Makka Pakkas sponge. Ok maybe I'm getting too excited. You never know. Maybe he'll be a rugby player, he's not soft enough for a footballer. Perhaps a shotputter, he flings the ipad hard enough.
William responds well to prompts at school, and music is often used to indicate the time of day at school, for example a song from Peter Pan is used to indicate that it's tidy up time, and he always cooperates. <Frantically searching for the bloody song on YouTube in the hope of a tidy house> I think I need a specific bedtime song because he's still swinging off the lampshade full of beans and its nearly 9pm. I may have to incorporate these techniques at home over the summer, then perhaps my blood pressure may go down. I may even.... get some sleep......
One of the most important parts of his report was the following phrase :
"He interacts in a small group of friends and actively seeks their company". Still gets me all tearry eyed now and I've had the report for a week. In the beginning when I was starting to process this whole autism thing, I found it really difficult to think that William might never really have a friendship or someone to love. I mean, to him, it might never have been important anyway. But to think of him being a loner (by choice or otherwise) was something I found deeply troubling. Seeing the early stages of forming relationships and friendships is really amazing, and encouraging that perhaps he will truly be happy in the long term.
I am eternally grateful to those people who have been involved with our family in this pivotal year. From the charities that have supported us in whatever way - Breaking Barriers North West, Love Autism in the North West, Blessings in Disguise, Embrace.
All the staff at Williams school, who have made such a difference in our little mans life and ours.
All our friends who have stuck by us and have been so understanding of my cancelled playdates when I've struggled. I know I don't see you all often enough but we're starting to really get somewhere now and I shall be pestering you all soon.
All the NEW friends! Without our exchange of stories of food theft, streaking, nappy accidents and teaching our children (accidentally) to swear, this journey would be so difficult.
All the family, who always try their hardest to include William even when its difficult, and treat him like any other pain in the arse 4.5 year old.
To Simon (Daddy) who gets me through the bad times with reasoning, hugs, coffee and peanut butter ice cream.
To Alex, the best big dude ever, who despite being under the cloud today for crossing a room by standing on furniture, is probably the biggest bundle of fun ever (squeezed in a tiny body with an enormous gob).
To William - the best little dude ever, who has taught me a lot about sominex, coffee tolerance and how amazing it is to be a little bit different.
To my dog Nibbler, who copes with being squished, chucked off the couch and trodden on, my best furry friend.
Love you all.
In a minute Wottingers!!
Wednesday 1 July 2015
Sports Day and Special People
Two years on from Williams diagnosis, and although I'm more at peace with what's going on, I'm not sure I'll ever 'get over it'. There's always gonna be the reminders of what he could have been like when you meet other children his age. Its my problem totally, I just feel a bit sorry for myself every now and again. I'm starting to think that perhaps I'm holding William back a little bit because of my own fears - about what people think of him and us, about people's reaction to his behaviour, the fact that we can't go near public loos, that he can't wait in a queue, that he's still in nappies when he's nearly 5. So, we're gonna start branching out and being a bit more brave. (I might retract that next weekend when he has a paddy in ASDA and starts starfishing on the floor in the biscuit aisle). "Starfish on aisle 4, starfish on aisle 4!"
Now I've never made his autism secret, but as he gets older and starts to stand out a bit more from his peers, I find that letting people know about it can be a help, and not everyone is there to judge. I've not had many negative response so far (runs to touch wood), but I guess one day I'll meet that arsehole and they'll get ten barrels from that sleep deprived woman on the edge.
Yesterday was William's sports day at New Greenhall school. Now I'm not a fan of Sports Day one iota, I was never physically gifted when I was younger, I was crap at PE and crap at Sports Days, and even now I have the co-ordination of a 3-legged centipede. Williams brother Alex has had a couple of bad Sports Days, being traumatised in 2 out of 3 years by not winning medals in his races. So why do we do this to our kids? Is it really so helpful to encourage such competition that children are crying because they're so disappointed in not winning races? I really don't think so and I frigging hate Sports Day. Plus there's always one obnoxious git who's kid wins all the races. Not any of my friends if anyone is reading!
To be honest, I was wondering how Sports Day would be carried out at Williams school. The children there have a vast range of physical and intellectual or mental disabilities or conditions, some are in wheelchairs, some are quite sleepy, some with behavioural problems, others strapped into pushchairs as they are wanderers or runners. (I'm not entirely sure what's politically correct when it comes to describing disabilities so apologies for any offence caused!). I was quite excited to see what they would come up with though and looked forwards to William's race, but secretly expected him to do a runner in the wrong direction or just stand there defiant cos he couldn't be bothered. Which, considering the searing heat, would have been my choice too unless they were waving a giant pack of haribos at the finish line.
Every single child was involved in some way in Sports Day, and I was amazed at how the races were designed to be so inclusive. The children in wheelchairs were pushed along by teachers and assistants, the kids beaming as they whizzed past, some children were guided by the adults so they knew what to do, some had to be dragged as they weren't in the mood to co-operate, but all in all, everyone had a great time.
Williams' race was brilliant. It was quite theatrical, and was linked into the topic they were learning in school, which was "Going on Holiday". Each child was to pick up a holiday related item, run with it and pop it in a suitcase some way up the track . William seemed to struggle with waiting for his turn, as I watched him wrestling with a TA, but when it was time to go he really enjoyed toddling off with his sunglasses. He has a really cute dainty run, almost like a little princess tottering in high heels, which is odd considering he kicks like a mule. He didn't quite get the concept of popping them in the case, so the teacher helped. He managed to sneak them out to play with later ;) He does love sunglasses.
Watching all the different children doing their activities made me tearry, not really in a sad way, but because it was such a privilege to see them being included, and the teachers had obviously thought hard about how they were going to execute this. The teachers, TAs, assistant and deputy headteacher, the bus driver(!) were all involved, pushing children along in buggies and chairs, guiding them, encouraging them, clapping, and making it so much fun. There was so much enthusiam and you could really tell that the teachers cared so much for the children and wanted them succeed. It was magical.
There were no medal winners at New Greenhall, just fun. No sense of disappointment for not coming first, no disappointment at dropping the beanbags, no embarrassment because you missed the cue to run, and all the friends and family watching were cheering on every single child there. I sometimes wish Alex's school could take a leaf out of that book. If you ever get chance to attend a Sports Day at a SEN school you'd understand that it really isn't about winning, it's about taking part.
I've always thought that we made the right decision to send William to a special needs school, and this really affirmed that decision. I don't think that a Mainstream school could ever include William the way that New Greenhall has done in the past year that he's been there. For just 3 hours a day since September, William has been transformed. His speech, his interaction, his behaviour, his happiness and our own. It's an amazing place, and its given William the best possible start to school life.
I don't really know if the staff at New Greenhall understand the impact they have on the lives of the children and their families. I hope they do. New Greenhall isn't just a School for children with Special Needs, its FULL of special people, children and adults.
Please have a look at their website, there's some great stuff on there, look out for William and his chums in the Early Learners blog section :)
http://www.newgreenhall.wigan.sch.uk/
Go go go Wottingers! No not that way! Oi! This way! Come on!
Now I've never made his autism secret, but as he gets older and starts to stand out a bit more from his peers, I find that letting people know about it can be a help, and not everyone is there to judge. I've not had many negative response so far (runs to touch wood), but I guess one day I'll meet that arsehole and they'll get ten barrels from that sleep deprived woman on the edge.
Yesterday was William's sports day at New Greenhall school. Now I'm not a fan of Sports Day one iota, I was never physically gifted when I was younger, I was crap at PE and crap at Sports Days, and even now I have the co-ordination of a 3-legged centipede. Williams brother Alex has had a couple of bad Sports Days, being traumatised in 2 out of 3 years by not winning medals in his races. So why do we do this to our kids? Is it really so helpful to encourage such competition that children are crying because they're so disappointed in not winning races? I really don't think so and I frigging hate Sports Day. Plus there's always one obnoxious git who's kid wins all the races. Not any of my friends if anyone is reading!
To be honest, I was wondering how Sports Day would be carried out at Williams school. The children there have a vast range of physical and intellectual or mental disabilities or conditions, some are in wheelchairs, some are quite sleepy, some with behavioural problems, others strapped into pushchairs as they are wanderers or runners. (I'm not entirely sure what's politically correct when it comes to describing disabilities so apologies for any offence caused!). I was quite excited to see what they would come up with though and looked forwards to William's race, but secretly expected him to do a runner in the wrong direction or just stand there defiant cos he couldn't be bothered. Which, considering the searing heat, would have been my choice too unless they were waving a giant pack of haribos at the finish line.
Every single child was involved in some way in Sports Day, and I was amazed at how the races were designed to be so inclusive. The children in wheelchairs were pushed along by teachers and assistants, the kids beaming as they whizzed past, some children were guided by the adults so they knew what to do, some had to be dragged as they weren't in the mood to co-operate, but all in all, everyone had a great time.
Williams' race was brilliant. It was quite theatrical, and was linked into the topic they were learning in school, which was "Going on Holiday". Each child was to pick up a holiday related item, run with it and pop it in a suitcase some way up the track . William seemed to struggle with waiting for his turn, as I watched him wrestling with a TA, but when it was time to go he really enjoyed toddling off with his sunglasses. He has a really cute dainty run, almost like a little princess tottering in high heels, which is odd considering he kicks like a mule. He didn't quite get the concept of popping them in the case, so the teacher helped. He managed to sneak them out to play with later ;) He does love sunglasses.
Watching all the different children doing their activities made me tearry, not really in a sad way, but because it was such a privilege to see them being included, and the teachers had obviously thought hard about how they were going to execute this. The teachers, TAs, assistant and deputy headteacher, the bus driver(!) were all involved, pushing children along in buggies and chairs, guiding them, encouraging them, clapping, and making it so much fun. There was so much enthusiam and you could really tell that the teachers cared so much for the children and wanted them succeed. It was magical.
There were no medal winners at New Greenhall, just fun. No sense of disappointment for not coming first, no disappointment at dropping the beanbags, no embarrassment because you missed the cue to run, and all the friends and family watching were cheering on every single child there. I sometimes wish Alex's school could take a leaf out of that book. If you ever get chance to attend a Sports Day at a SEN school you'd understand that it really isn't about winning, it's about taking part.
I've always thought that we made the right decision to send William to a special needs school, and this really affirmed that decision. I don't think that a Mainstream school could ever include William the way that New Greenhall has done in the past year that he's been there. For just 3 hours a day since September, William has been transformed. His speech, his interaction, his behaviour, his happiness and our own. It's an amazing place, and its given William the best possible start to school life.
I don't really know if the staff at New Greenhall understand the impact they have on the lives of the children and their families. I hope they do. New Greenhall isn't just a School for children with Special Needs, its FULL of special people, children and adults.
Please have a look at their website, there's some great stuff on there, look out for William and his chums in the Early Learners blog section :)
http://www.newgreenhall.wigan.sch.uk/
Go go go Wottingers! No not that way! Oi! This way! Come on!
Monday 22 June 2015
He likes it, he likes it not.
Likes and Dislikes
One of mums plain duvet with no piddly annoying kiddies characters...! Hurrah!
As William gets older and we learn a bit more about his behaviour, we start to see how much his body language is telling us. Unlike Alex who will publicly (and on top note) indicate how much he hates Frozen and how Elsa should be strung up from a lamp post, William cannot do so as easily.
Its a puzzle trying to figure him out, some days he might make it clear if he doesn't like something, maybe by walking away. Quite often if you're boring the crap out of him he will walk off and shut the door so he doesn't have to deal with you any longer.
So how do we figure out what he likes and what he doesn't like? Well its trial and error.
For a while William had not slept with a duvet on. He preferred snuggling up with my fluffy dressing gown and a crap old cellular blanket. Duvet underneath him was fine, but not on top, which usually meant getting cold in the night and waking (more often than usual). Its taken maybe 6 months and several different duvet covers for me to figure out that he just doesn't like the duvet covers I bought him. So the typical young boy stuff that we thought he would enjoy - Pirates, Cars, Dinosaurs etc. No luck. Cheapo dark blue duvet cover on sale at Aldi - within minutes of putting the damned thing on his bed I get a "night night mum!" as he scurries underneath it the little bugger! So now we know what he will sleep in. Halleluia!
Williams 'blankies' i.e. thieving mums dressing gown to sleep in.
One of mums plain duvet with no piddly annoying kiddies characters...! Hurrah!
Something that we've learned over the years is that William prefers to make a choice. He does need a visual prompt for this though, so when it comes to tea time, its easier to show him a bag of sausages and a box of fish fingers to choose from. He will point and say the word if he's in the mood. Sometimes he will walk off and you just have to guess. Just because he has the option to make a choice doesn't mean he will! Words are too much for William a lot of the time so keeping it simple and showing him something is more likely to get a response. Bribery with sweets works well too.
We are currently in the process of upgrading his bike. Bearing in mind William still loves this little plastic trike thing that has a little lap belt that barely fits round his pot belly, its time to get him a new one. But we cannot choose one we think he might like as a surprise like we could with Alex. Nor can we give him Alex's old bike. Because he's not interested. We will need to take him to a cycle shop and let him choose his own, and pray like Billy-o to the God of Dosh that he doesn't choose a 300 quid bike. If he doesn't make his own decision on something, he will refuse use it. This rings true for most things in his life, from food, games, clothing.
Its great that he has his own likes and dislikes, as you get to discover a bit more about his personality. By giving him 2 options you can eliminate the things he has no interest in, so far we've figured out that he hates character PJs, blankly refusing Skylanders and Disneys Planes. He likes red pesto but not green. He hates Frozen too but enjoys the Hobbit which is ace :D
William's very specific wants and needs do have advantages. Unlike his brother who thinks I have a secret money pit, William very rarely (if ever) demands anything when out and about. Alex always wants this that and the other. Ooh mum I haven't got a car like this can i can i? No Alex you have a roomful of cars. No but this one has a different shade of blue on the door.....
The disadvantages are that you have to try hard to figure out what he wants, as he can't talk about something to show an interest. Unless its chocolate. He always wants chocolate. This week he's been on coffee flavoured chocolate! That's my boy :)
"Burn that bloody dinosaur duvet cover Wottingers!"
Tuesday 9 June 2015
Funfairs and laziness
Hey Folks
Sorry it's been a while since I posted! It's been a hectic month or so, time is flying by. Actually I've been pretty lazy so that hasn't helped either.
We've had a few busy weekends, the busiest day by far was when we went to a special session at Silcocks funfair in Wigan, courtesy of Blessings in Disguise, a charity local to us which arranges events for disadvantaged children and their families. For that morning, only disabled children were present along with their families. The great thing about an event like this is that everyone is equal.
It doesn't matter what the disability is, we are all in the same boat, there is no worrying about how your kids behave in public, how much screaming they do, whether they're struggling to wait in a queue etc, cos we are all the same. This kinda stuff is really important for us, as "Family time" or trips out are really difficult. Its hard to keep everyone happy, and quite often William dictates what we get up to, depending on whether or not he can handle what we have planned, or how long it takes before he gets bored and starts buggering off. Alex misses out on a lot, so this was a great opportunity to let him have some fun too, in a safe environment. Thankfully, I managed to avoid having to go on the freaky shit rides, that was his Dads job :D
Unfortunately I didn't manage to avoid the rollercoaster. Admittedly, the rollercoaster looked pretty tame, and there didn't seem to be very many ill-looking faces as they exited the ride. Bonus, I thought. How wrong I was, and how delightfully amused William was as I screeched my way over the tiddly bumps like a big girlie. The shame.
The sight of children dropping to the floor, melting down was the norm, and no one batted an eyelid. It was a truly magical morning.
Fast forward on the same day. What a difference a couple of hours makes. In Tesco, the sight of William throwing himself on the ground in the middle of the aisles was not so widely accepted. Granted, shopping is a bit crap, and William was pretty miffed that he wasn't allowed to mess with the playhouse on display in the kids section. The sight of me dragging him out of that playhouse was not a pretty one, but I didn't fancy forking out for a broken house as he continued to kick the crap out of it while I politely tried to coax him out. People walked past with disapproving looks, not even a sympathetic smile. We left quickly after that, after just picking up a fraction of our shopping. He has a knack for being a pain in the arse in public.
Lesson learned - Click and Collect.
The thing is, I've not yet grown that tough skin that says "f*ck you and your opinions about my child". He's not spoilt, and he's not a brat. I take that back, he's not a brat ALL of the time. He's just a kid. And I would challenge anyone who has ever given me disapproving looks about his behaviour to come and have a go and see how you deal with it. And watch me chuckle as you fail miserably.
We are currently under guidance of the Behaviour Support Team. I guess I hoped they had some kind of magic wand and fabulous advice and suddenly everything would become easy to deal with. I was told that we were doing everything right when it comes to his behaviour: ignore the unwanted behaviour if it was safe to do so. Yes that does mean leaving him sprawled on the floor in Tesco, and if he's in the way of people, dump him in a quiet area before leaving him sprawled.
So that magic wand fizzled out in a "Poof of arseness" and we carry on as before. We do have some good ideas regarding his temper though, so fingers crossed that those will work over time.
<My apologies in advance to whichever stores we visit in future, if you do see me on CCTV dragging a small body across the floor to a secret place, I assure you its just William and he's truly alive. >
In contrast to the evil eyes of Tesco, we visited White Moss Garden Centre one weekend. William had a fascination with the counters, you know the ones with the little doors. The lady at the till was so lovely and not a hint of annoyance. That's the kind of acceptance we need so badly in society. I suppose it would be easy for me to just tell everyone we meet that he has autism and it might make people more understanding, but why should I have to? It doesn't define him. If everyone got their heads out of their arse and had a bit more patience then the world would be a better place.
Finally, if you have time would you check out Ben on facebook An Autistic Author . He writes a blog on the other side of autism and he's a bloody fab chap. And I'm proud to do a weekly blogspot on there for him, so if you're missing my posts on here then check out Ben's blog cos I might have done something there :D
"Get off the frigging floor Wottingers!"
Sorry it's been a while since I posted! It's been a hectic month or so, time is flying by. Actually I've been pretty lazy so that hasn't helped either.
We've had a few busy weekends, the busiest day by far was when we went to a special session at Silcocks funfair in Wigan, courtesy of Blessings in Disguise, a charity local to us which arranges events for disadvantaged children and their families. For that morning, only disabled children were present along with their families. The great thing about an event like this is that everyone is equal.
It doesn't matter what the disability is, we are all in the same boat, there is no worrying about how your kids behave in public, how much screaming they do, whether they're struggling to wait in a queue etc, cos we are all the same. This kinda stuff is really important for us, as "Family time" or trips out are really difficult. Its hard to keep everyone happy, and quite often William dictates what we get up to, depending on whether or not he can handle what we have planned, or how long it takes before he gets bored and starts buggering off. Alex misses out on a lot, so this was a great opportunity to let him have some fun too, in a safe environment. Thankfully, I managed to avoid having to go on the freaky shit rides, that was his Dads job :D
Unfortunately I didn't manage to avoid the rollercoaster. Admittedly, the rollercoaster looked pretty tame, and there didn't seem to be very many ill-looking faces as they exited the ride. Bonus, I thought. How wrong I was, and how delightfully amused William was as I screeched my way over the tiddly bumps like a big girlie. The shame.
The sight of children dropping to the floor, melting down was the norm, and no one batted an eyelid. It was a truly magical morning.
Fast forward on the same day. What a difference a couple of hours makes. In Tesco, the sight of William throwing himself on the ground in the middle of the aisles was not so widely accepted. Granted, shopping is a bit crap, and William was pretty miffed that he wasn't allowed to mess with the playhouse on display in the kids section. The sight of me dragging him out of that playhouse was not a pretty one, but I didn't fancy forking out for a broken house as he continued to kick the crap out of it while I politely tried to coax him out. People walked past with disapproving looks, not even a sympathetic smile. We left quickly after that, after just picking up a fraction of our shopping. He has a knack for being a pain in the arse in public.
Lesson learned - Click and Collect.
The thing is, I've not yet grown that tough skin that says "f*ck you and your opinions about my child". He's not spoilt, and he's not a brat. I take that back, he's not a brat ALL of the time. He's just a kid. And I would challenge anyone who has ever given me disapproving looks about his behaviour to come and have a go and see how you deal with it. And watch me chuckle as you fail miserably.
We are currently under guidance of the Behaviour Support Team. I guess I hoped they had some kind of magic wand and fabulous advice and suddenly everything would become easy to deal with. I was told that we were doing everything right when it comes to his behaviour: ignore the unwanted behaviour if it was safe to do so. Yes that does mean leaving him sprawled on the floor in Tesco, and if he's in the way of people, dump him in a quiet area before leaving him sprawled.
So that magic wand fizzled out in a "Poof of arseness" and we carry on as before. We do have some good ideas regarding his temper though, so fingers crossed that those will work over time.
<My apologies in advance to whichever stores we visit in future, if you do see me on CCTV dragging a small body across the floor to a secret place, I assure you its just William and he's truly alive. >
In contrast to the evil eyes of Tesco, we visited White Moss Garden Centre one weekend. William had a fascination with the counters, you know the ones with the little doors. The lady at the till was so lovely and not a hint of annoyance. That's the kind of acceptance we need so badly in society. I suppose it would be easy for me to just tell everyone we meet that he has autism and it might make people more understanding, but why should I have to? It doesn't define him. If everyone got their heads out of their arse and had a bit more patience then the world would be a better place.
Finally, if you have time would you check out Ben on facebook An Autistic Author . He writes a blog on the other side of autism and he's a bloody fab chap. And I'm proud to do a weekly blogspot on there for him, so if you're missing my posts on here then check out Ben's blog cos I might have done something there :D
"Get off the frigging floor Wottingers!"
Thursday 14 May 2015
Ch-ch-ch-ch changes!
Living with ASD is pretty tough, but like with most lifelong conditions, life is what you make it. Sometimes you can get worn down with negativity and woe-is-us, but it really doesn't have to be like that.
I've had a bad week and have been evaluating life. Looking back over the last couple of years since Williams devastating diagnosis, we see how far we've come. Its only when you compare him to his peers that you see how far behind he is developmentally.
Answer : don't compare! Why should it matter who starts reading or who says their alphabet first. There's no prizes for that. But perhaps one day Willy might win 50 quid in a banana-eating contest.
Some of our good points:
Support
Williams school keyworker was at a cookery session this afternoon with us and she was telling me how much his speech had come on and how great he's been. Watching her interact with him is very special, she obviously has a "knack" with him and he really is very fond of her. The work that school put into the kids is second to none.
Personality
Theres a lot of personality starting to show now and we've waited a long time for that. If I say "Love you William" at bedtime, he tells me to "shush shush". He loves playing with my hair and hiding in it, he mutters under his breath when he's miffed and insists we go for cake when we visit Sainsburys. He loves fart noises and hates tidying up.
Speech
Teaching William words can be fun. I was watching the school doors open and close today, and teaching him "the door is closing" and "door is shut". I hadn't banked on his version of "shut" to sound like "shit" so that was a fail. He's already learned "Christ's sake" (my fault) so better avoid shutting doors for a while.
Brothers
The boys are changing so much, there is now some interaction between them and William toddles after his big bro like a little sheep to play outside (and find biscuits). He does still need a great deal of adult support to do basic activities and can't follow instructions, but they can play on bikes together outside and giggle like any other siblings.
Its a giant leap from the withdrawn little boy who always sat alone playing in a corner 2.5 years ago. He still has days like that but we're used to his ways now and we accept that. I guess we all have days where we just want to sit in a corner and not be bothered, I know I have!
"Shit the door Wottingers!"
I've had a bad week and have been evaluating life. Looking back over the last couple of years since Williams devastating diagnosis, we see how far we've come. Its only when you compare him to his peers that you see how far behind he is developmentally.
Answer : don't compare! Why should it matter who starts reading or who says their alphabet first. There's no prizes for that. But perhaps one day Willy might win 50 quid in a banana-eating contest.
Some of our good points:
Support
Williams school keyworker was at a cookery session this afternoon with us and she was telling me how much his speech had come on and how great he's been. Watching her interact with him is very special, she obviously has a "knack" with him and he really is very fond of her. The work that school put into the kids is second to none.
Theres a lot of personality starting to show now and we've waited a long time for that. If I say "Love you William" at bedtime, he tells me to "shush shush". He loves playing with my hair and hiding in it, he mutters under his breath when he's miffed and insists we go for cake when we visit Sainsburys. He loves fart noises and hates tidying up.
Speech
Teaching William words can be fun. I was watching the school doors open and close today, and teaching him "the door is closing" and "door is shut". I hadn't banked on his version of "shut" to sound like "shit" so that was a fail. He's already learned "Christ's sake" (my fault) so better avoid shutting doors for a while.
Brothers
The boys are changing so much, there is now some interaction between them and William toddles after his big bro like a little sheep to play outside (and find biscuits). He does still need a great deal of adult support to do basic activities and can't follow instructions, but they can play on bikes together outside and giggle like any other siblings.
Its a giant leap from the withdrawn little boy who always sat alone playing in a corner 2.5 years ago. He still has days like that but we're used to his ways now and we accept that. I guess we all have days where we just want to sit in a corner and not be bothered, I know I have!
"Shit the door Wottingers!"
Saturday 2 May 2015
Let's Talk.
One of the things I love about coming home from work is hearing about what everyone has been doing in the day. Alex can usually give me a running commentary about every aspect of his life, including how many farts he's done or how many chips he's eaten for tea and the reasons why one particular chip may have not been edible. If I ask him what he's done at school he'll say "nothing" or "can't remember", then will burst out some random facts about Nelson Mandela or Samuel Pepys when he's ready.
William can't tell me what he's been up to, even if he's had the most amazing day ever. I find that pretty hard to deal with some days to be honest.
Williams' class at school recently had a trip to a Safari Park. He was obviously shattered when I got home and had been a busy boy, but could not tell me what he's seen or done. I tried several simple-worded questions to try and get a response, I talk about animals, the school bus, the teachers, and nothing gets a response, not even one word. Instead, we go back to the familiar routine of repeating lines from Iggle piggle and that's all I'm gonna get.
I rely on the school teachers and assistants writing in his planner to find out what he's done in a school day. He doesn't come home and say any words that might give me a clue, but on odd days he will say something out of the blue, like count numbers up to 30, or repeat lines that the teacher may have said weeks ago.
As it turns out, despite being wary of the monkeys hijacking the school mini-bus, William enjoyed himself on the school trip. Apparently he really loved the sealions and watched these for ages.
It's hard to think that William might never really talk for pleasure or have a 'chat' with his mum, and its difficult that I have to learn about how he's doing or how he might be feeling through someone elses observations.
On the other hand we have Alex gob-almighty whose brain is constantly whirring away thinking of crap to tell you. And I love it, I'm astonished that someone so small can retain so much bizarre information :)
Take time to listen to your kids guys and gals, even if you think its annoying drivel. It's not to them, it's important. Yes, even the conversation about what colour their snot was at break time. You could be in my position where your child CAN'T talk to you, and that's pretty sad.
We WILL get there one day with William. I WILL have that chat. It might be through pictures or symbols, but it will happen one day, I'm sure of it.
Watch out for the swinging monkeys, Wottingers!
William can't tell me what he's been up to, even if he's had the most amazing day ever. I find that pretty hard to deal with some days to be honest.
Williams' class at school recently had a trip to a Safari Park. He was obviously shattered when I got home and had been a busy boy, but could not tell me what he's seen or done. I tried several simple-worded questions to try and get a response, I talk about animals, the school bus, the teachers, and nothing gets a response, not even one word. Instead, we go back to the familiar routine of repeating lines from Iggle piggle and that's all I'm gonna get.
I rely on the school teachers and assistants writing in his planner to find out what he's done in a school day. He doesn't come home and say any words that might give me a clue, but on odd days he will say something out of the blue, like count numbers up to 30, or repeat lines that the teacher may have said weeks ago.
As it turns out, despite being wary of the monkeys hijacking the school mini-bus, William enjoyed himself on the school trip. Apparently he really loved the sealions and watched these for ages.
It's hard to think that William might never really talk for pleasure or have a 'chat' with his mum, and its difficult that I have to learn about how he's doing or how he might be feeling through someone elses observations.
On the other hand we have Alex gob-almighty whose brain is constantly whirring away thinking of crap to tell you. And I love it, I'm astonished that someone so small can retain so much bizarre information :)
Take time to listen to your kids guys and gals, even if you think its annoying drivel. It's not to them, it's important. Yes, even the conversation about what colour their snot was at break time. You could be in my position where your child CAN'T talk to you, and that's pretty sad.
We WILL get there one day with William. I WILL have that chat. It might be through pictures or symbols, but it will happen one day, I'm sure of it.
Watch out for the swinging monkeys, Wottingers!
Sunday 26 April 2015
What a Carry On!
What a comedic (almost) 24hrs. Whose ultra crap idea was it to put the boys together in the same bedroom for company? Oh yeah that was me. So who ended up sorting William out when he started his midnight screeching? Daddy of course! :D
I knew it was a long shot but Alex is really enjoying Williams company now as he gets older, so it seemed ideal to give them a chance of sharing a room. Previously we have moved William into his own room due to night wakenings, but these are more easily managed. She says. There's not much talking between the boys, it's pretty much one way conversation from Alex but interaction has really improved. Alex is as mad as a box of frogs, and William loves it.
William seemed to settle after the midnight banshee call, and little was heard of him till 6am, where he had come to my room with a bog roll saying"Fingers! Fingers!". I looked at him with beady tired eyes and saw his hands full of bogies. After a quick wipe with bog roll it wasn't shifting so I sent him off to wash hands which he can do of a fashion.He is very fond of nose mining, but hey aren't we all??!
No?....
Oh just me and William then... ahem moving on....
Off he toddles to find some k'nex to play with. A short while later Alex pops in with "Mum you've got to look outside". He is fond of fake poo jokes so I tell him he's in trouble if he gets me out of bed for a plastic dump on the landing.
Poo it was... but not plastic! Bearing in mind our pooch has been poorly with sick and squits, this was not really a surprise. What WAS a surprise was that miraculously William had avoided stepping in it. If it had been outside then he would happily trample in it. Woo hoo! Some evidence of thought process- no shoes, therefore no standing in sh*t. We were massively impressed.
You know where this is heading don't you?
As we rose from bed the cogs whirred....I checked the snotty bog roll.... was it snot on Williams hand?
Sniff....
Sniff....
Short answer - No.
Long answer.... "Jesus Christ he's had his hands in dog sh*t, what if she's got worms, Jesus Christ has he eaten it? what's that brown on his face? check where he's touched, is it on his k'nex, frigging hell its on the taps! Clean his hands for Christs sake!"
Of course this might have still happened if he'd not switched rooms but it seemed the perfect end to a bad judgement.
The boys are still together and will remain so unless Alex shows any signs of detriment. The plan is to turn the spare room into a sensory zone over time. We have been awarded a grant from Family Fund to set us off which is ace, but unfortunately sensory stuff is bloody expensive, and even a slight association with 'Special Needs' bumps prices up no end.
Providing the dog manages to control her bowels tonight might be better. William is already in bed at 6.45pm watching IgglePiggle with his drugs. Not recreational ones. Fingers crossed for a better night!
"Don't stand in the sh*t Wottingers!"
Saturday 18 April 2015
Go the **** to sleep!
Evening all!
William is on a minimum-sleep cycle at the moment, so what a perfect moment to talk about it. Sleep deprivation sucks. Not for him, he's having a whale of a time chatting shite to himself at 3am. Personally I'm a light sleeper, so once I'm awake, I'm stuffed till I reach exhaustion. Many a time I've been up reading about serial killers on Wikipedia after a night session with William. I don't know if I should be worried about myself or not.
Anyway, William has melatonin each night to settle him, it's supposed to relax him but sometimes I think I'd be better off taking it instead. I've often thought about slipping some whisky in his juice but best not. I haven't done that in case anyone has picked up the phone to call social services.
When you have a new baby, the exhaustion of night feeding is pretty unbearable at times. But often after a full belly of milk baby will nod off again for a bit and you kinda get used to a cycle, with the hope that one day they will sleep through. William is now 4 and still wakes most nights. Sometimes its for comfort of Mum or Dad, sometimes its to play or to
babble about Upsy Daisy or count numbers. He has a tendency to pi$$ about, tossing and turning and saying "telly on". I will be the first to admit that on the odd occasion I have said "William, its 3 o'clock in the pissing morning, FFS go to sleep". He can't be left alone as he starts banging furniture or screaming, which wakes the whole house, including the dust mites, so you're in it for the duration whether that be 20 minutes or 2 hours.
A fellow mummy posted a youtube video on Facebook a while back and I watched it over and over again with Daddy, snorting with laughter. Julie, you saved my sanity with this, and even on our worst nights we can sing this to ourselves and smile. A bit. With blurred vision and matchsticks.
Here it is (warning explicit lyrics)
http://youtu.be/XYsTXkoQwEM
As I type I have William in bed with me faffing around and far from tired. Its 9.44pm and after a late night on the beer yesterday, I could do with catching up on rest. Daddy says "Come on, bedtime" and William rolls over to me saying "to Mum" and being all cute. Little bugger. It's going to be a long night.
I'm hoping that sleep will improve one day, but I know many families who go through a similar thing, and of course many children who don't have autism fanny about at night times. Williams brother is a great sleeper, but tends to be up early, about 6am even on weekends.
Tonights prediction is that William will pass out about 11pm, I'll still be reading about criminals till midnight, when William will be up again to play Igglepiggle games. Alex will be up at 6, Mum and Dad will be grumpy, copious coffee is consumed and the cycle starts again.
Go the **** to sleep Wottingers!
Thursday 16 April 2015
Swings and schools.
The end of the Easter holidays approaches for us. 'Hooray', I hear the boys' Daddy cry! With it brought a kinda sad day, as today we received the official offer of Williams reception place at mainstream school. I remember the nerves of waiting for his brothers placement a few years ago, waking in the night and nervously checking my emails in a cold sweat, followed by the huge grin of knowing that Alex got in our first choice of school, one of the best performing in the area, 'St.Philips C.E Primary'.
Williams offer is also at St.Philips, but he won't be going there. He will be at New Greenhall, a Special School that he is already attending on an observation place and is more suited to his needs. I admit I find that a bit gut-wrenching that he won't be going to mainstream, although we feel it is the right decision (and not one taken lightly). Alex doesn't seem to mind, but I bet somewhere there will be disappointment that his brother won't be there with him. I find it annoying that we had to apply for a mainstream school in the first place, feels like a kick in the teeth to be honest. But I guess not every child who needs an SEN place will get it.
I am really happy for those friends whose children have been offered a place at the St.Philips, but there is pang of sadness, maybe jealousy, that it our family whose path has been altered. I guess we all have our difficulties no matter who we are though, and ours just happens to be autism. And there could be worse things in life.
We went to the park this morning, bright and early before people start to arrive. This is best because freedom and space is important to William. It also means we are more relaxed as parents, as we're not concerned about William bashing someone's face in with a swing. We met up with 2 more lovely families, whose boys are in Williams class. The children didn't play "together", but it was lovely to watch them running, squealing and even bickering at times. It's hard to describe, but when you're with families that "get it", its an amazing feeling. Alex also got to play with a friend his own age, and that's so important, as William doesn't really know how to play with his brother yet. Or maybe he chooses not too. Alex talks gibberish a lot of the time 😀
Later in the day I read through William's most recent Educational Psychology report sipping my 15th coffee of the day, and I see how far he has come in the last 6 months, coinciding with starting Special Needs Nursery. Usually these kind of reports are upsetting as they bring home just how difficult things are for them, but this time I didn't feel upset, but positive. This time it wasn't "oh poor William look how delayed he is". I was looking at how much he had achieved, and how he had changed. I see he is strong willed, defiant to adults (ace!) and in the psychologists words "happy and independent". I saw how carefree he was in the park, running wild, squealing and shouting, making noise and bashing his face into the gate like any other child. I did tell him to stop messing with the gate but he chose that moment to have one of his defiant moods ;)
At this point it twigged. It really didn't matter that William wasn't going to his brothers school. Its a brill school, but it's not about being the best, its about potential. The best mainstream school in the world may not be able to unlock Williams potential. But New Greenhall School may just do that. I'm excited about the coming year, just as excited as I was about Alex starting school.
As a parent of a child with additional needs it's easy to get bogged down with the negatives, but it doesn't have to be like that. William has as much right as any other child in this world. Just because he doesn't speak with words doesn't mean he has nothing to say. Just because he doesn't look right at something doesn't mean he is not taking it in.
This is WILLIAM. A boy who hates vegetables and will close his eyes to see if they disappear. A boy who wants ice lollies for breakfast. A boy who will hide in the shed when he doesn't want to come in. A boy who loves fart noises and burping. His autism may affect him in some ways, but it makes him different, not less.
Bring on Reception!
X
Williams offer is also at St.Philips, but he won't be going there. He will be at New Greenhall, a Special School that he is already attending on an observation place and is more suited to his needs. I admit I find that a bit gut-wrenching that he won't be going to mainstream, although we feel it is the right decision (and not one taken lightly). Alex doesn't seem to mind, but I bet somewhere there will be disappointment that his brother won't be there with him. I find it annoying that we had to apply for a mainstream school in the first place, feels like a kick in the teeth to be honest. But I guess not every child who needs an SEN place will get it.
I am really happy for those friends whose children have been offered a place at the St.Philips, but there is pang of sadness, maybe jealousy, that it our family whose path has been altered. I guess we all have our difficulties no matter who we are though, and ours just happens to be autism. And there could be worse things in life.
We went to the park this morning, bright and early before people start to arrive. This is best because freedom and space is important to William. It also means we are more relaxed as parents, as we're not concerned about William bashing someone's face in with a swing. We met up with 2 more lovely families, whose boys are in Williams class. The children didn't play "together", but it was lovely to watch them running, squealing and even bickering at times. It's hard to describe, but when you're with families that "get it", its an amazing feeling. Alex also got to play with a friend his own age, and that's so important, as William doesn't really know how to play with his brother yet. Or maybe he chooses not too. Alex talks gibberish a lot of the time 😀
Later in the day I read through William's most recent Educational Psychology report sipping my 15th coffee of the day, and I see how far he has come in the last 6 months, coinciding with starting Special Needs Nursery. Usually these kind of reports are upsetting as they bring home just how difficult things are for them, but this time I didn't feel upset, but positive. This time it wasn't "oh poor William look how delayed he is". I was looking at how much he had achieved, and how he had changed. I see he is strong willed, defiant to adults (ace!) and in the psychologists words "happy and independent". I saw how carefree he was in the park, running wild, squealing and shouting, making noise and bashing his face into the gate like any other child. I did tell him to stop messing with the gate but he chose that moment to have one of his defiant moods ;)
At this point it twigged. It really didn't matter that William wasn't going to his brothers school. Its a brill school, but it's not about being the best, its about potential. The best mainstream school in the world may not be able to unlock Williams potential. But New Greenhall School may just do that. I'm excited about the coming year, just as excited as I was about Alex starting school.
As a parent of a child with additional needs it's easy to get bogged down with the negatives, but it doesn't have to be like that. William has as much right as any other child in this world. Just because he doesn't speak with words doesn't mean he has nothing to say. Just because he doesn't look right at something doesn't mean he is not taking it in.
This is WILLIAM. A boy who hates vegetables and will close his eyes to see if they disappear. A boy who wants ice lollies for breakfast. A boy who will hide in the shed when he doesn't want to come in. A boy who loves fart noises and burping. His autism may affect him in some ways, but it makes him different, not less.
Bring on Reception!
X
Saturday 11 April 2015
A bloody awesome week!
As the last day of my Easter holiday approaches I look back on a great week at home with my family. To be honest, I used to find time at home stressful, usually due to bawling screeching unhappy William, this being at its worst when the boys dad was working. This time was different and we've had an amazing break and some fabulous input from William that gives us more clues to his personality.
William is at his happiest in the great outdoors. He's recently discovered the wonders of a scooter, and has been zooming around the garden and beyond with great skill, far more confident than his brother at that age. He has shown some sense of awareness on the scooter that he doesn't show when walking. He seems to know that bumping into a wall will probably not be a good idea and will jump off the scooter like a pro. Yet walking in front of cars he will do quite merrily if not grabbed. He walks confidently pushing his scooter, with care and ease. Yet without it he will run and walk erratically and his mind is everywhere other than where it should be. It's frustrating but I'm pleased that we have found a possible window into his personality using wheels, and maybe an aid to his behaviour problems.
William is also a water baby, and the glorious weather has meant we could have the paddling pool out - cue William whipping his pants off before its even been filled! He loves to splash and squeal with his brother, and more often than not everyone will be soaked, much to his amusement.
Alex sometimes finds holidays a bit hard. Most families with a 4 and 6 year old would be expecting the kids to amuse themselves to a point. But because William doesn't really talk, that is difficult for Alex. They still squabble like any other siblings, but they can't play games together due to the high level of adult support William needs in order to understand things. He often needs things repeating many many times before its understood, and that doesn't guarantee he will retain it. But we manage, and Alex is understanding how he can help William by being a good role model.
This week we've had William actively seeking hugs and will say "cuddles". Tonight as I put him to bed we played some Igglepiggle games then I told him it was time for sleep. He said "cuddles" and "mwah", giving me a little 'kiss' (his version is a mild headbutt but its the right body part at least). I told him I loved him and he said "shush shush" which was awesome 😊 I think he understands its to do with the cuddles and its a bit mumsy.
Lesson learned this week is that we need to go with the flow when it comes to activities. A farm visit we had was of no interest to William where the animals were concerned, but the big-assed bouncy slide of doom was. We find it easier to have another adult with us on our journeys, so William always has 1 to 1 and mum and dad can spend valuable time with Alex doing stuff he likes. Alex is an animal lover and was in his element holding baby birds and bunnies.
We're also getting regular loving interaction from William which is fabulous and long overdue for us. A far cry from earlier days when he shunned our presence.
A good week. No. A bloody AWESOME week!
William is at his happiest in the great outdoors. He's recently discovered the wonders of a scooter, and has been zooming around the garden and beyond with great skill, far more confident than his brother at that age. He has shown some sense of awareness on the scooter that he doesn't show when walking. He seems to know that bumping into a wall will probably not be a good idea and will jump off the scooter like a pro. Yet walking in front of cars he will do quite merrily if not grabbed. He walks confidently pushing his scooter, with care and ease. Yet without it he will run and walk erratically and his mind is everywhere other than where it should be. It's frustrating but I'm pleased that we have found a possible window into his personality using wheels, and maybe an aid to his behaviour problems.
William is also a water baby, and the glorious weather has meant we could have the paddling pool out - cue William whipping his pants off before its even been filled! He loves to splash and squeal with his brother, and more often than not everyone will be soaked, much to his amusement.
Alex sometimes finds holidays a bit hard. Most families with a 4 and 6 year old would be expecting the kids to amuse themselves to a point. But because William doesn't really talk, that is difficult for Alex. They still squabble like any other siblings, but they can't play games together due to the high level of adult support William needs in order to understand things. He often needs things repeating many many times before its understood, and that doesn't guarantee he will retain it. But we manage, and Alex is understanding how he can help William by being a good role model.
This week we've had William actively seeking hugs and will say "cuddles". Tonight as I put him to bed we played some Igglepiggle games then I told him it was time for sleep. He said "cuddles" and "mwah", giving me a little 'kiss' (his version is a mild headbutt but its the right body part at least). I told him I loved him and he said "shush shush" which was awesome 😊 I think he understands its to do with the cuddles and its a bit mumsy.
Lesson learned this week is that we need to go with the flow when it comes to activities. A farm visit we had was of no interest to William where the animals were concerned, but the big-assed bouncy slide of doom was. We find it easier to have another adult with us on our journeys, so William always has 1 to 1 and mum and dad can spend valuable time with Alex doing stuff he likes. Alex is an animal lover and was in his element holding baby birds and bunnies.
We're also getting regular loving interaction from William which is fabulous and long overdue for us. A far cry from earlier days when he shunned our presence.
A good week. No. A bloody AWESOME week!
Thursday 2 April 2015
World Autism Awareness Day!
April 2nd 2015 - Its World Autism Awareness Day! A perfect day to post.
Today people have been wearing blue, or onesies, or buildings have been lit up, to raise awareness of autism and the charities that support families with autism. Awareness should be everyday, its understanding that needs to improve, but I quite like having a set day that really raises the profile and perhaps gets people asking about it. Recent figures from the National Autistic Society suggest that 1 in every 100 people has autism, but so few people know anything about it despite such a hefty figure.
I remember when I started noticing William was a "little bit different" and I got on to the internet looking for lists of development milestones in babies for hours on end to try and fight off the niggling feelings, and googling his specific problems - "why doesn't my son respond to his name?", "child has stopped talking", "late walker", that kinda stuff. Again and again the term "development red flags" appeared in search results, and I really started thinking, "sh*t this is worrying. And there our journey began, and I knew what was going to be the outcome.
Some of the basic lookout signs for Autism.
William often plays "inappropriately" with toys, he loves to spin cars and will put them upside down and watch the wheels go round. He can't do imaginative play yet. Many a time I've sat with his plastic tea set pretending the tea and cake is scrumptious (sound effects and all) and he just walks off thinking I'm a nut job.
He's very sensitive to some lights, particularly halogens and strip lights. He's distressed at public toilets, possibly due to the lighting but we've not figured that one out properly yet.
He has no awareness of danger, particularly when it comes to road safety, and has taken the hands of strangers in play centres to help him onto equipment. Not so bad at a playcentre, but if that happens in the street that's a big worry.
He is very passive, hence needing a high level of adult input to help him learn. He really would sit eating bananas all day if he could. And that gives him the farts. And we don't want that. Trust me.....
I make no secret of Williams autism, but unfortunately so few people really have any inkling of the difficulties that people with autism face. Since his diagnosis, I have often thought about the people in my neighbourhood that I grew up thinking were "oddballs" or were labelled as "local weirdos". Looking back and now having my own experience of learning difficulties, its entirely plausible that these people, usually men, had similar problems, maybe they too had autism, and that makes me feel bad. I guess we will all have been guilty of making fun of these people at one time as children. One day William might well be that "local weirdo" and I can't bear the thought of someone making fun of him, calling him names or purposely doing things to distress him. You see a lot of things in the news about this stuff and as a parent I know I can't protect him forever, but hopefully I can find a support network that will be able to help.
Alex is well aware of William's autism, but treats him no differently than any other child, apart from making sure he simplifies his speech so William can grasp the basics of what he's saying. It's quite cute. In the mornings, Alex will come and ask William if he wants to go downstairs with him, then Alex will put the TV on and they will play for a while as I sup my strong coffee after 3 hours sleep.
http://www.wikihow.com/Explain-Autism-to-People
This is a pretty good link with some useful info. I don't like the word "autistic", it sounds like William is sick or suffering something, and the article does go on about "abnormal" behaviours, which is a bit drastic, but the general info is pretty good and I urge you all to have a read and see what we go through. I must say though, that William does not do any of the dramatic facial expressions seen in this article ha ha.
Soon I will be getting my butt in gear and sorting out the formatting of this blog, I'm a bit rusty on the HTML stuff and have little free time to get info onto my page, but after having a few compliments about the blog my head is swelling a bit and I think i'd better make a bit more effort before you all get bored. Perhaps when I've had a good nights sleep. Ha ha! Never happen. Wonder why ;)
Today people have been wearing blue, or onesies, or buildings have been lit up, to raise awareness of autism and the charities that support families with autism. Awareness should be everyday, its understanding that needs to improve, but I quite like having a set day that really raises the profile and perhaps gets people asking about it. Recent figures from the National Autistic Society suggest that 1 in every 100 people has autism, but so few people know anything about it despite such a hefty figure.
I remember when I started noticing William was a "little bit different" and I got on to the internet looking for lists of development milestones in babies for hours on end to try and fight off the niggling feelings, and googling his specific problems - "why doesn't my son respond to his name?", "child has stopped talking", "late walker", that kinda stuff. Again and again the term "development red flags" appeared in search results, and I really started thinking, "sh*t this is worrying. And there our journey began, and I knew what was going to be the outcome.
William often plays "inappropriately" with toys, he loves to spin cars and will put them upside down and watch the wheels go round. He can't do imaginative play yet. Many a time I've sat with his plastic tea set pretending the tea and cake is scrumptious (sound effects and all) and he just walks off thinking I'm a nut job.
He's very sensitive to some lights, particularly halogens and strip lights. He's distressed at public toilets, possibly due to the lighting but we've not figured that one out properly yet.
He has no awareness of danger, particularly when it comes to road safety, and has taken the hands of strangers in play centres to help him onto equipment. Not so bad at a playcentre, but if that happens in the street that's a big worry.
He is very passive, hence needing a high level of adult input to help him learn. He really would sit eating bananas all day if he could. And that gives him the farts. And we don't want that. Trust me.....
I make no secret of Williams autism, but unfortunately so few people really have any inkling of the difficulties that people with autism face. Since his diagnosis, I have often thought about the people in my neighbourhood that I grew up thinking were "oddballs" or were labelled as "local weirdos". Looking back and now having my own experience of learning difficulties, its entirely plausible that these people, usually men, had similar problems, maybe they too had autism, and that makes me feel bad. I guess we will all have been guilty of making fun of these people at one time as children. One day William might well be that "local weirdo" and I can't bear the thought of someone making fun of him, calling him names or purposely doing things to distress him. You see a lot of things in the news about this stuff and as a parent I know I can't protect him forever, but hopefully I can find a support network that will be able to help.
Alex is well aware of William's autism, but treats him no differently than any other child, apart from making sure he simplifies his speech so William can grasp the basics of what he's saying. It's quite cute. In the mornings, Alex will come and ask William if he wants to go downstairs with him, then Alex will put the TV on and they will play for a while as I sup my strong coffee after 3 hours sleep.
http://www.wikihow.com/Explain-Autism-to-People
This is a pretty good link with some useful info. I don't like the word "autistic", it sounds like William is sick or suffering something, and the article does go on about "abnormal" behaviours, which is a bit drastic, but the general info is pretty good and I urge you all to have a read and see what we go through. I must say though, that William does not do any of the dramatic facial expressions seen in this article ha ha.
Soon I will be getting my butt in gear and sorting out the formatting of this blog, I'm a bit rusty on the HTML stuff and have little free time to get info onto my page, but after having a few compliments about the blog my head is swelling a bit and I think i'd better make a bit more effort before you all get bored. Perhaps when I've had a good nights sleep. Ha ha! Never happen. Wonder why ;)
Saturday 28 March 2015
Sunglasses and Batman
Bit of a mixed bag week, lots of repetition! Hearing the words "Where are the Wottingers?" 50 times in the space of 5 minutes is pretty brain melting, especially when there are no signs of a Wottinger anywhere in the 10 mile radius, but he's talking and that's pretty amazing stuff considering I didn't think he would speak.
As I type William is in my bed mooching about and talking to himself, saying phrases that he's learned relating to bed - "sleepy", "go sleep", "blankies" , "tired". So he can relate some speech to situations, but it takes a fair bit of repeating to him before he remembers it. He doesn't do social chat, he only says what he wants to and when he wants to, but that's very hit and miss and often he can't respond to you when you need it. Or maybe he just doesn't want to! He might be sick of me banging on about stuff. I'm kinda hoping that one day he might be able to read this and say "you know mum, I understood everything, I just didn't wanna answer cos you were doing my head in".
In the shop the other day a gentleman commented on his Batman hat, saying to William that he was a bit small to be Batman. William didn't even notice the guy was talking to him so we adults laughed it off between us and off he went. It's cute now whilst he's little, but when he's ignoring people at 18 he gonna seem rude. But that's William, his life is blinkered to what he wants to focus on, and if you're not part of his plan for that moment then you're screwed 😀 Hopefully people will be more accepting with awareness.
He's been pretty interactive with us too when he's felt like it. One evening we put sunglasses on. He stole mine, I had to squeeze into these toddler sized ones with elastic which nearly cut off blood supply to my forehead. But he loved it and was worth the suffering while we took some selfies.
Moments like this are rare. Williams brother Alex is a huge fan of waffling and loves quality time with family gossiping about not very much and it's great. William likes his time alone doing things his own way, and rarely wants adult input (though that would benefit his learning 100 fold). So when he comes and flings the toddler glasses in my face, we put the glasses on and worry about the ingrowing eyelashes later!
Saturday 21 March 2015
Campervans and cuts
What a day it's been! Last couple of days were pretty uneventful but today seems to have stirred a few thoughts.
William has often showed an interest in a campervan diecast model that belongs to his Dad, but its not really a toy so he's not allowed to play with it. However, William sneaked it out of the display cabinet and I found him joyously making "zoom" noises with it in the air and looking very cheeky when I caught him. So with a bit of pleading from me and the hopeful excited eyes from William, Daddy found 3 mini campervans for him to have in EXCHANGE for the prized diecast model. So.... now William is now the proud owner of 3 mini campervan toys AND a diecast model. William 1, Daddy 0. Who says he doesn't know what he's doing!
Its nice to see him show an interest in something new, that doesn't involve banging doors, repeated sounds, spinning or yogurt.
Later in the day we had a couple of negative events. William and his brother were playing in the front garden of their Grandma's house. They were being watched but in a split second, William was out of the gate. He's never ever done this before and we spend a lot of time visiting Grandparents. This was quite worrying, as William has very little sense of danger and would no doubt have wandered into the road happily. So that's something to bear in mind.
We do a lot of walking and we always do the green cross code routine, yet William is blissfully unaware of the damage that a car could do to him. He does not like to hold hands unless he chooses to, will not walk with reins and will struggle free of a wrist strap. Quite often we will be seen grabbing William up off the floor as he drops, or supporting his head as he goes to throw himself on the floor to avoid an injury. Sometimes he's just being a typical young child and will only lie there for so long till he realises you ain't responding. Other times he won't get up. Other times he will get up and walk in the opposite direction and you'll be chasing him like Peter Rabbit.
A favourite place for William to run off dangerously is in carparks, particularly Asda. I noted a few weeks back how I had bruised his arm when I grabbed him to stop him legging it. I'm pretty sure I'm also on CCTV at Iceland chasing him as he decided to leg it through the automatic doors. Automatic doors are a serious ballache. And I don't even have balls.
For much of the late afternoon he was a bit of a grotbag, lying on the floor and generally being defiant. He wandered off at tea time, refusing to eat, and at some point he cut his finger on something quite badly and was dripping blood around the house and up the walls. I still have no idea how he did it or what on. He wouldn't let us look at it or dress it, mainly I think because it didn't bother him much. He was more miffed about me running round the house after him in a blind panic with a wet tea towel. I know my house needs decorating but I'd prefer proper paint.
Dumping him in the bath helped, and i puffed a bit of talc on it to dry it off. I'd read on a budgie group that cornflour was good to help with minor cuts or broken blood feathers, so i figured id that would work on budgies, then talc might help with a flapping child.
After a bit of bribery with a blackcurrant lollipop I got a plaster on it, which didn't stay on too long, but got us through an episode of Iggle Piggle before William popped it off and flung it on the floor with a look of victory.
William has a reduced response to pain. He seems to have an initial flinch or a little cry if maybe he's trapped his finger, or sometimes a bit of a shock, if there is a fall, but there doesn't "seem" to be an aftermath for him and he carries on as he was. Illness is always difficult, he can't explain he's feeling rough, so its usually a guessing game unless there's an obvious clue like streaming snot.
Tomorrow's fun includes swimming! For William, swimming usually involves running around the pool collecting the balls and watering cans. Which is obviously great fun for him but no so much for me running after him like a beached whale. We go to a session that's for special needs only, and it's great. Alex loves having a paddle, and enjoys fleecing me to buy something from the vending machine as we leave.
Have a good evening folks and thanks for reading!
x
William has often showed an interest in a campervan diecast model that belongs to his Dad, but its not really a toy so he's not allowed to play with it. However, William sneaked it out of the display cabinet and I found him joyously making "zoom" noises with it in the air and looking very cheeky when I caught him. So with a bit of pleading from me and the hopeful excited eyes from William, Daddy found 3 mini campervans for him to have in EXCHANGE for the prized diecast model. So.... now William is now the proud owner of 3 mini campervan toys AND a diecast model. William 1, Daddy 0. Who says he doesn't know what he's doing!
Its nice to see him show an interest in something new, that doesn't involve banging doors, repeated sounds, spinning or yogurt.
Later in the day we had a couple of negative events. William and his brother were playing in the front garden of their Grandma's house. They were being watched but in a split second, William was out of the gate. He's never ever done this before and we spend a lot of time visiting Grandparents. This was quite worrying, as William has very little sense of danger and would no doubt have wandered into the road happily. So that's something to bear in mind.
We do a lot of walking and we always do the green cross code routine, yet William is blissfully unaware of the damage that a car could do to him. He does not like to hold hands unless he chooses to, will not walk with reins and will struggle free of a wrist strap. Quite often we will be seen grabbing William up off the floor as he drops, or supporting his head as he goes to throw himself on the floor to avoid an injury. Sometimes he's just being a typical young child and will only lie there for so long till he realises you ain't responding. Other times he won't get up. Other times he will get up and walk in the opposite direction and you'll be chasing him like Peter Rabbit.
A favourite place for William to run off dangerously is in carparks, particularly Asda. I noted a few weeks back how I had bruised his arm when I grabbed him to stop him legging it. I'm pretty sure I'm also on CCTV at Iceland chasing him as he decided to leg it through the automatic doors. Automatic doors are a serious ballache. And I don't even have balls.
For much of the late afternoon he was a bit of a grotbag, lying on the floor and generally being defiant. He wandered off at tea time, refusing to eat, and at some point he cut his finger on something quite badly and was dripping blood around the house and up the walls. I still have no idea how he did it or what on. He wouldn't let us look at it or dress it, mainly I think because it didn't bother him much. He was more miffed about me running round the house after him in a blind panic with a wet tea towel. I know my house needs decorating but I'd prefer proper paint.
Dumping him in the bath helped, and i puffed a bit of talc on it to dry it off. I'd read on a budgie group that cornflour was good to help with minor cuts or broken blood feathers, so i figured id that would work on budgies, then talc might help with a flapping child.
After a bit of bribery with a blackcurrant lollipop I got a plaster on it, which didn't stay on too long, but got us through an episode of Iggle Piggle before William popped it off and flung it on the floor with a look of victory.
William has a reduced response to pain. He seems to have an initial flinch or a little cry if maybe he's trapped his finger, or sometimes a bit of a shock, if there is a fall, but there doesn't "seem" to be an aftermath for him and he carries on as he was. Illness is always difficult, he can't explain he's feeling rough, so its usually a guessing game unless there's an obvious clue like streaming snot.
Tomorrow's fun includes swimming! For William, swimming usually involves running around the pool collecting the balls and watering cans. Which is obviously great fun for him but no so much for me running after him like a beached whale. We go to a session that's for special needs only, and it's great. Alex loves having a paddle, and enjoys fleecing me to buy something from the vending machine as we leave.
Have a good evening folks and thanks for reading!
x
Subscribe to:
Posts (Atom)