So, while my crazy, intrepid adventurers are outside digging a hole in the pouring rain (literally one of their all time favourite things to do!) I thought I would take a moment (from inside, in the warm and dry!) to write a quick post about bedtimes.
Obviously, being an autism house - with a healthy dose of sensory processing disorder and ADHD unofficially thrown into the mix - bed times are, well, not BED times lol.
In the summer months we don't officially have a bed time any more - this was dispensed with last year as it is IMPOSSIBLE to get DD to sleep when it is light. Fact.
However, they are not allowed to 'stay up' either. So it's our usual routine of no tv after dinner (we only have a TV downstairs in the lounge anyway) and no computers, blue screens etc (again, they don't have anything of this nature of their own anyway) after dinner either.
Both children have pets in their rooms for company - and to provide white noise (without actually providing white noise, because 3 CD players have been wrecked by fiddling fingers when we did attempt music, stories or white noise on CDs!) so apart from George the tortoise, Ginger the bunny and Goldie (original huh?) the goldfish , all is quiet.
So, the rule is 6 o'clock is Get Ready for Bed time - ie. jamas, and bathroom routine. In our case this is brush teeth (with help), wash face, toilet and do inhalers. We tend not to do bath before bed as both find bathtime enjoyable and highly stimulating so we tend to do it as a relaxing day activity rather than before bed time.
Once they are ready for bed (rooms must also be tidy at this point) they may then have Quiet Time - on their own, in their rooms. If their rooms were not tidy, they must use their Quiet Time to tidy rather than play....
They are not allowed to play with each other beyond this time (as they become too over stimulated and the inevitable sibling fallings out will ensue!) and the idea, of course, is to de-stimulate at this point.
In the summer they are allowed an unquantified amount of Quiet Time. There are still rules - it is quiet play ONLY. So that's jigsaws, reading, drawing, writing, Lego etc. And they may only do one activity at a time, and everything from it must be put away before they start the next activity as rooms must be tidy before they go to bed. We enforce this by revoking the free bed time the following night if they do not comply - ie. if they stay up til 10pm and trash their rooms, the following night it will be lights out and in bed at 7pm.
In the winter (hurrah for the winter!) when it is DARK, then lights out is 7pm anyway (oh yeah!).
But, as I say, due to the light evenings and the difficulty in sleeping generally they are allowed to choose when to actually go to bed in the summer months. Happily it is usually by 9pm :-) However, let me assure you - we put in YEARS of groundwork and hard labour in the early years in order for this to be achievable now! I spent a good 18 months sitting/ sleeping in a chair in DD's room just holding her while she screamed and DH did the same with DS, walking the floor for hours upon hours upon hours - having taken over from me when my thumb dislocated from the weight of carrying DS day and night, hour upon hour. Then followed more painful years of silent returning to rooms, co-sleeping, floor sleeping, night driving, re-inforcement, Gro-clocks, you name it! But this is where we are now :-)
As it's been Christmas hols etc the kids have been staying up with us generally speaking. Not much point trying to do anything else when you have so much excitement, visitors and change of routine. But this past week we have been gradually winding it back - starting with bed at 9pm and working back from there. Amazingly, it has actually worked in steps.
The first night, both were in tears, up and down the stairs and eventually settled about 11pm. The second night, same but settled a little earlier - around 10.40pm. The third night, similar. We just cuddled, consoled and tucked back in to bed each time.
Forth night, no tears! Doors slightly open, asleep by 9.30pm.
Last night, the 7th night, we got to lights out at 7.30pm, asleep before 9pm and no-one got out of bed AT ALL!!!
This has definitely been an eye opening learning curve for me. My husband (DH) is always desperate to get back into routine immediately once the holidays are over, but I have learnt - through extremely painful and damaging experience - that you can't do this with autism. They need time, time to adjust, time to process. You CANNOT just pull (or put) the rug from under them. This only causes more panic, more tension, more stress and more opposition.
So this year, I am pleased to say we went at their pace AND IT WORKED! DH had a little wobble one night and I had to send him to the kitchen lol. But other than that, we stayed on course, we didn't tell off, we didn't 'send back to bed'. We simply received them when they got up, gave them a cuddle for a few minutes and said goodnight again. And now they are ready to do it themselves again as per our routine.
This morning I told them how proud I was that neither of them had needed to get up last night. That I was really happy for them that they felt ok not getting up. DS immediately proudly proclaimed "and I didn't wet myself the WHOLE time!" (Huuuuuuuge achievement btw, we got through 3 mattresses last year alone!!) and DD grinned "and I put my head above the duvet!" Again huuuuuuuge achievement as she normally will only sleep head under the duvet then wonders why she wakes sweaty and itchy!!
So, I don't know how long it will last - things change daily (or oftener!!) in our Autism House, but today I'm celebrating those achievements, for however long they do last :-)
Monday, 9 January 2017
Saturday, 7 January 2017
Friend or fiend? The Colours of Autism
So this morning I wanted to talk about Autism in girls, specifically the ridiculous misnomer that is "High Functioning" Autism.
My DD is diagnosed with Autistic Spectrum Disorder. Here in the UK they will no longer diagnose Aspergers in children :-( And, as yet, no one seems brave enough to formally diagnose PDA (Pathalogical Demand Avoidance) - although trust me, it is a very REAL thing!! So she is diagnosed ASD. If pushed, she is diagnosed High Functioning Autism.
This is because she walks, talks and (on the surface at least) appears to engage and function "normally".
I cannot tell you the amount of times I have heard that delightful phrase "but she doesn't look autistic!" Even the Special Needs social group my daughter recently started to attend, I was told (by the leader!!) I just don't see the autism in your DD!!!! It's much more obvious in DS but I don't see it in DD!
And this is the battle I face, every single day. And, more importantly, it is the battle SHE faces :-( Expectations on her are SO high - yet she has the same diagnosis of the child next to her banging his head against the wall, and the girl on the right swearing profusely and dragging her toe nails across the floor, and the flappers and the smackers and all the other "typical' behaviours we sadly still seem to associate with ASD :-(
But she has ENORMOUS sensory issues. She cannot bear the sunlight, the smell of virtually every food, anyone breathing near her. She obsessively cleans her hands, cannot bear them to be sticky for even a moment, yet will walk around with hair unbrushed and over her eyes, dirt on her face or bleeding chapped lips because she will not drink enough and cannot tolerate the feel of lipsil on her lips.
She is highly verbal, but much of this is a smoke screen. Cleverly learnt phrases she can roll out in set social situations. Once she has used up her stock, she flounders and the friendships quickly deteriorate.
There is something, something that other parents, teachers, group leaders cannot quite put their finger on. Something not quite right, but it's not autism, it definitely can't be autism, because we KNOW what autism looks like. We've seen Rainman, we've done a day's training at our place of work, we know someone who knows someone whose child has autism and they can't talk, only scream, and you can't touch them.......
Because she doesn't flap, she doesn't stim or tick in obvious ways. Although watch closely and her eyes constantly flicker. Her facial expressions mimic those in the cartoons she has seen, they are not genuine emotional reactions. She fidgets, she runs rather than walks, she favours being on her toes.
She is the child that is first to be invited to every party, the first child from pre-school and school (when we went) to be invited on playdates and to peoples houses for tea. Because she seems bright, open, sociable, engaging, confident. She is, in the sense she has learnt to be, but she no more understands it than the fabled parrot understands why he is saying "pieces of eight". It is just a pattern. A series of sounds and motion that illicit a predictable response from another human. But in base terms, she doesn't understand how or why this is, so once she is through her rehearsed speeches and responses, the other child slowly disengages from her. She becomes one of two things - occasionally indifferent (because she is exhausted by the effort of trying to engage them) or angry at their apparent rejection. Then launches the meanness, the spite, the cruelty. So she can't possibly be autistic can she, 'cos everyone knows they're not mean......
So she's never invited back for a second playdate, anywhere, ever. No-one does want to sit with her, be her partner. People don't like her, and they don't want to play with her, but they can't put their finger on it so it's never anything we can fix.
I can't tell you the number of times I was called in to nursery, school or clubs to be told by a concerned party that she was being "possessive in a friendship". But no one EVER picked up on why! It was always HER problem, that she was in control of :-( It wasn't. She was possessive in friendships because it probably took all her waking energy to 'translate' that person's pattern of behavior. Any outside influence would interfere with that - like a radio not tuned properly to the correct channel - the interference means you cannot 'hear' properly. It's also the reason she struggles, to this day, to maintain multiple friendships and why she would rather go off and draw on her own than play with a group of children. It is simply overwhelming. It is sensory overload. It is too loud and confusing, to difficult to keep up with, translate, identify the rules and predict the outcomes. In short it is just too much. But because she doesn't 'look' autistic, parents judge. Painfully so. And tell their children to ignore that 'nasty little girl'. They tell their children she is 'jealous' or that she is being 'mean'. This hurts SO MUCH. Because they would not, and do not, react this way to a child with OBVIOUS autism. When my son is stimming, no one has EVER told their child he was 'mean' or 'jealous'. When he is overwhelmed and just needs to be on his own, or can't engage in that play, no-one has ever said to 'ignore him'.
So let me tell you something. She isn't mean. She is emotionally immature. She has the emotional maturity of a pre-verbal child - so somewhere around 18/24 months. The terrible two's if you like. So the emotional maturity of a toddler, in the body of a 9 year old, that looks more like the body of an 11 year old, with the intellectual capacity of a 14-15 year old. Just think about that for a moment. For more than a moment. That's one hell of a cross to bear.
She is highly verbal, yet she communicates her needs as a non-verbal child would. She rages, she has silent tantrums, she blames and she sulks and oh how she rages. She broods and she punishes, because baby is cross, baby is angry, baby is sad, baby is hurt, baby is sick. And this shocks and confuses people - because surely an eloquent, capable, "normal looking", bright, bubbly girl shouldn't be behaving like this. She must be spoilt. She is just mean and spiteful. God knows, I thought it myself for long enough :-(
But it's simply the colour of her Autism. It's called a spectrum for a reason. And no, we are most definitely NOT all "on it"! But she is, albeit one of the less-understood colours.
If I could have one wish, it would be that the "professionals" stop calling it High Functioning Autism because, trust me, she's no more High Functioning than those that stim outwardly. She's no more verbal, emotionally, than the non-verbal. The world is NO LESS CONFUSING for her, she just turns it inward more. She has suffered with self-harming behaviours from the youngest age, and this is a constant fear of mine as she gets older. It is one of the many reasons we have chosen an alternative path to school, because I know that in the system she would be much more susceptible to self-harming psychological disorders as she struggles to cope in an increasingly confusing world.
So we make the world smaller for her. This doesn't make her High Functioning, it makes her Highly Facilitated. There's a difference. A BIG difference. Strip away all the coping mechanisms, the play therapy, the therapeutic parenting, the carefully managed timetable, the removal of demands from her daily life and you too will see there is no such thing as High Functioning.
We need to understand this more. We need to understand the colours of autism, and accept that if we know someone with autism, we know that one person with autism. Just as if we know a person with blonde hair we know that one person with blonde hair. One size does not fit all. Thank God!
My DD is diagnosed with Autistic Spectrum Disorder. Here in the UK they will no longer diagnose Aspergers in children :-( And, as yet, no one seems brave enough to formally diagnose PDA (Pathalogical Demand Avoidance) - although trust me, it is a very REAL thing!! So she is diagnosed ASD. If pushed, she is diagnosed High Functioning Autism.
This is because she walks, talks and (on the surface at least) appears to engage and function "normally".
I cannot tell you the amount of times I have heard that delightful phrase "but she doesn't look autistic!" Even the Special Needs social group my daughter recently started to attend, I was told (by the leader!!) I just don't see the autism in your DD!!!! It's much more obvious in DS but I don't see it in DD!
And this is the battle I face, every single day. And, more importantly, it is the battle SHE faces :-( Expectations on her are SO high - yet she has the same diagnosis of the child next to her banging his head against the wall, and the girl on the right swearing profusely and dragging her toe nails across the floor, and the flappers and the smackers and all the other "typical' behaviours we sadly still seem to associate with ASD :-(
But she has ENORMOUS sensory issues. She cannot bear the sunlight, the smell of virtually every food, anyone breathing near her. She obsessively cleans her hands, cannot bear them to be sticky for even a moment, yet will walk around with hair unbrushed and over her eyes, dirt on her face or bleeding chapped lips because she will not drink enough and cannot tolerate the feel of lipsil on her lips.
She is highly verbal, but much of this is a smoke screen. Cleverly learnt phrases she can roll out in set social situations. Once she has used up her stock, she flounders and the friendships quickly deteriorate.
There is something, something that other parents, teachers, group leaders cannot quite put their finger on. Something not quite right, but it's not autism, it definitely can't be autism, because we KNOW what autism looks like. We've seen Rainman, we've done a day's training at our place of work, we know someone who knows someone whose child has autism and they can't talk, only scream, and you can't touch them.......
Because she doesn't flap, she doesn't stim or tick in obvious ways. Although watch closely and her eyes constantly flicker. Her facial expressions mimic those in the cartoons she has seen, they are not genuine emotional reactions. She fidgets, she runs rather than walks, she favours being on her toes.
She is the child that is first to be invited to every party, the first child from pre-school and school (when we went) to be invited on playdates and to peoples houses for tea. Because she seems bright, open, sociable, engaging, confident. She is, in the sense she has learnt to be, but she no more understands it than the fabled parrot understands why he is saying "pieces of eight". It is just a pattern. A series of sounds and motion that illicit a predictable response from another human. But in base terms, she doesn't understand how or why this is, so once she is through her rehearsed speeches and responses, the other child slowly disengages from her. She becomes one of two things - occasionally indifferent (because she is exhausted by the effort of trying to engage them) or angry at their apparent rejection. Then launches the meanness, the spite, the cruelty. So she can't possibly be autistic can she, 'cos everyone knows they're not mean......
So she's never invited back for a second playdate, anywhere, ever. No-one does want to sit with her, be her partner. People don't like her, and they don't want to play with her, but they can't put their finger on it so it's never anything we can fix.
I can't tell you the number of times I was called in to nursery, school or clubs to be told by a concerned party that she was being "possessive in a friendship". But no one EVER picked up on why! It was always HER problem, that she was in control of :-( It wasn't. She was possessive in friendships because it probably took all her waking energy to 'translate' that person's pattern of behavior. Any outside influence would interfere with that - like a radio not tuned properly to the correct channel - the interference means you cannot 'hear' properly. It's also the reason she struggles, to this day, to maintain multiple friendships and why she would rather go off and draw on her own than play with a group of children. It is simply overwhelming. It is sensory overload. It is too loud and confusing, to difficult to keep up with, translate, identify the rules and predict the outcomes. In short it is just too much. But because she doesn't 'look' autistic, parents judge. Painfully so. And tell their children to ignore that 'nasty little girl'. They tell their children she is 'jealous' or that she is being 'mean'. This hurts SO MUCH. Because they would not, and do not, react this way to a child with OBVIOUS autism. When my son is stimming, no one has EVER told their child he was 'mean' or 'jealous'. When he is overwhelmed and just needs to be on his own, or can't engage in that play, no-one has ever said to 'ignore him'.
So let me tell you something. She isn't mean. She is emotionally immature. She has the emotional maturity of a pre-verbal child - so somewhere around 18/24 months. The terrible two's if you like. So the emotional maturity of a toddler, in the body of a 9 year old, that looks more like the body of an 11 year old, with the intellectual capacity of a 14-15 year old. Just think about that for a moment. For more than a moment. That's one hell of a cross to bear.
She is highly verbal, yet she communicates her needs as a non-verbal child would. She rages, she has silent tantrums, she blames and she sulks and oh how she rages. She broods and she punishes, because baby is cross, baby is angry, baby is sad, baby is hurt, baby is sick. And this shocks and confuses people - because surely an eloquent, capable, "normal looking", bright, bubbly girl shouldn't be behaving like this. She must be spoilt. She is just mean and spiteful. God knows, I thought it myself for long enough :-(
But it's simply the colour of her Autism. It's called a spectrum for a reason. And no, we are most definitely NOT all "on it"! But she is, albeit one of the less-understood colours.
If I could have one wish, it would be that the "professionals" stop calling it High Functioning Autism because, trust me, she's no more High Functioning than those that stim outwardly. She's no more verbal, emotionally, than the non-verbal. The world is NO LESS CONFUSING for her, she just turns it inward more. She has suffered with self-harming behaviours from the youngest age, and this is a constant fear of mine as she gets older. It is one of the many reasons we have chosen an alternative path to school, because I know that in the system she would be much more susceptible to self-harming psychological disorders as she struggles to cope in an increasingly confusing world.
So we make the world smaller for her. This doesn't make her High Functioning, it makes her Highly Facilitated. There's a difference. A BIG difference. Strip away all the coping mechanisms, the play therapy, the therapeutic parenting, the carefully managed timetable, the removal of demands from her daily life and you too will see there is no such thing as High Functioning.
We need to understand this more. We need to understand the colours of autism, and accept that if we know someone with autism, we know that one person with autism. Just as if we know a person with blonde hair we know that one person with blonde hair. One size does not fit all. Thank God!
Monday, 2 January 2017
Out With The Old
So, Christmas is officially over (in our house). The decorations are down - whatever could be recycled has been - and the house looks kinda enormous 😂
And so it's time to wish you all a very Happy and Healthy New Year xx
Who's made/ making resolutions? Care to share?
Mine are - to take it slow 😄 😄
We've had a glorious, routine-less fortnight of lazy, restful days, family, friends, too much food, very few chores and basically utter relaxation 😆 I actually feel quite rejuvenated. After the stressful run up to Christmas, the event itself was surprisingly stress-free 😁
So now I need to slowly reintroduce routine to the kids. I've been guilty in the past of rushing things, becoming anxious and trying to force the kids back in to a conventional mould too quickly (lol - at all!)
But this New Year we are taking it slow. We started with a return to Bed Time today - albeit an hour later, and no enforced lights out. What I want is for them to gradually readjust rather than feel instantly robbed of the freedom they've had.
So, my plan is to make the return to the ordinary more seamless and less abrupt. A gradual use up of the Christmas food, a slow return to set meal times, a staggered reducing of bedtime and lights out. And a slow reintroduction of our Learning routine - lots of reading together, colouring, chatting, playing board games and card games. Maybe some online learning, watching a few nature documentaries and gradually stepping it up at a place they are not just comfortable with, but largely even unaware of 😃
We've got our Geography Club planned for later this month. We'll be learning about Italy - so lots of new things to explore on that theme.
We also have our Learning Group planned, a friend is teaching this one and we're going to be learning about Birds 🐦
DS wants to do some more research about his greatest passion, Carnivorous Plants. He is writing a book about them, and bought some new seeds with his Christmas money he wants to have a go at cultivating. I'll let you know how we get on.
DD and her friend are also keen to start their own mini book group. They both struggle with shyness in a large group and don't find it the easiest to put themselves or their ideas forward, so we're going to give them the opportunity to just work on this together and see how they get on. They worked beautifully together over the Christmas holidays - designing and making dolls clothes together, so both us Mum's are excited about nurturing this desire of theirs to work collaboratively on things. I think it will massively improve their self-esteem and confidence as they support and encourage each other's ideas.
Apart from that my resolutions are to stay healthy. To continue to make sure I listen to my body, say No sometimes, eat healthily and get enough sleep 💖
My other resolution is to budget better and do more as a family. Work pressures and constraints have meant DH has been increasingly absent over the autumn/ winter terms and existing HE commitments meant we were financially over-committed at times. So I'm looking to cut back on our group commitments and free up.more time (and money!) for family 💞
Now they're all in writing, you can hold me to them 😁😁
So now I've showed you mine, are you gonna tell me yours? 😆
And so it's time to wish you all a very Happy and Healthy New Year xx
Who's made/ making resolutions? Care to share?
Mine are - to take it slow 😄 😄
We've had a glorious, routine-less fortnight of lazy, restful days, family, friends, too much food, very few chores and basically utter relaxation 😆 I actually feel quite rejuvenated. After the stressful run up to Christmas, the event itself was surprisingly stress-free 😁
So now I need to slowly reintroduce routine to the kids. I've been guilty in the past of rushing things, becoming anxious and trying to force the kids back in to a conventional mould too quickly (lol - at all!)
But this New Year we are taking it slow. We started with a return to Bed Time today - albeit an hour later, and no enforced lights out. What I want is for them to gradually readjust rather than feel instantly robbed of the freedom they've had.
So, my plan is to make the return to the ordinary more seamless and less abrupt. A gradual use up of the Christmas food, a slow return to set meal times, a staggered reducing of bedtime and lights out. And a slow reintroduction of our Learning routine - lots of reading together, colouring, chatting, playing board games and card games. Maybe some online learning, watching a few nature documentaries and gradually stepping it up at a place they are not just comfortable with, but largely even unaware of 😃
We've got our Geography Club planned for later this month. We'll be learning about Italy - so lots of new things to explore on that theme.
We also have our Learning Group planned, a friend is teaching this one and we're going to be learning about Birds 🐦
DS wants to do some more research about his greatest passion, Carnivorous Plants. He is writing a book about them, and bought some new seeds with his Christmas money he wants to have a go at cultivating. I'll let you know how we get on.
DD and her friend are also keen to start their own mini book group. They both struggle with shyness in a large group and don't find it the easiest to put themselves or their ideas forward, so we're going to give them the opportunity to just work on this together and see how they get on. They worked beautifully together over the Christmas holidays - designing and making dolls clothes together, so both us Mum's are excited about nurturing this desire of theirs to work collaboratively on things. I think it will massively improve their self-esteem and confidence as they support and encourage each other's ideas.
Apart from that my resolutions are to stay healthy. To continue to make sure I listen to my body, say No sometimes, eat healthily and get enough sleep 💖
My other resolution is to budget better and do more as a family. Work pressures and constraints have meant DH has been increasingly absent over the autumn/ winter terms and existing HE commitments meant we were financially over-committed at times. So I'm looking to cut back on our group commitments and free up.more time (and money!) for family 💞
Now they're all in writing, you can hold me to them 😁😁
So now I've showed you mine, are you gonna tell me yours? 😆
Wednesday, 21 December 2016
A New Dawn
So, it's been a difficult week in our house.
Yesterday we had the long, long awaited ADOS (Autism Assessment) for our Darling Daughter (aged 9). And after a number of arduous, uncomfortable hours they confirmed what Mummy has known for so long - that she is also autistic.
This was both wonderful news and a bitter blow at the same time.
I had wanted to know. I fought for the referral, God how I fought. The teachers, SENCOs, therapists, CAMHS consultants I have gone up against in the past are too numerous, hopeless and depressing to recount. Only for it to be SO GLARINGLY OBVIOUS when you actually get her in a room with the right 2 people.
But of course then the frustration sets in. The frustration at this deeply, horrifically flawed system that gives no continuity of care in this situation. As everything, it's a postcode lottery. Our county councils opinion is, if we can afford our mortgage (barely!), we can afford to fund our own care. We can't 😢
So we got another leaflet, another list of charities to beg and bother 😥 Charities who are underfunded and over-subscribed, who will immediately try to recruit you to their fundraising team and offer to add you to their mailing list (for £135 ANNUAL membership fee!)
Of course there is the Cygnet course you can go on. And who can't free themselves up for 3 hours per week (more likely 4-5 by the time you add travel, parking etc) for SIX CONSECUTIVE WEEKS, during the day, term time (when your kids with additional needs are Home Schooled because THE SYSTEM HAS ALREADY FAILED THEM!!!)
So I argued, and I reasoned. They placated with cries of what an amazing parent I am, how well informed, in tune, how facilitating, what amazing work I have done with my children, how there is no intervention above and beyond what I am giving them.
NOT GOOD ENOUGH.
What if I wasn't able to do this all myself? What about a carers break, y'know, ever???? What about if I couldn't do it? Because the day will come that I can't.
Anyone with special needs children will know that Babysitting is a foreign word!! There is a startling lack of willing offers, particularly from those nearest and dearest to you from whom you'd hoped for more.
Over the years, party and social invites will dwindle as less and less people want your unpredictable kids around, and there's nothing you can do - there's no-one ever to leave them with. Not even paid agencies 😥
So you become increasingly isolated, increasingly burdened but nobody cares. Turns out "Every Child DOES NOT Matter" - only the high achievers that affect the League Tables or the average Joe's that maintain the status quo.
Ironically my DD WAS one of those High Achievers. A full 2 academic years ahead in EVERY subject when she was at school. But the damage to her Mental Health, Well Being and Self Esteem were insurmountable. And so I refused to leave her in an environment, worked like a slave to bring up the class average, with no praise or recognition ( "because it would make the other children feel bad about their achievements!" ) and no help AT ALL for her social and emotional needs ....... because she was "intelligent enough to know how to behave"!!!!
Oh I am so angry, so angry with this system that is failing our children and young people. And will continue to fail them as adults :-(
This 'problem' will not go away.
My children are wonderful, good mannered,hard-working, self motivated individuals. They need an ENORMOUS amount of help EVERY SINGLE DAY because there are some things they just CAN'T do.........walk safely beside a road, remember to eat, drink, wash,go to the toilet, get appropriately dressed. They are now 8 and 9 1/2 and in these areas, nothing has changed since they were toddlers - they will ALWAYS need this level of prompting. What happens when I'm not there to give it? I tested the theory once - my daughter got to day 3 of not drinking anything at all, I intervened before hospitalization was needed.
But apparently this is ok. Because apparently I will live forever. Apparently I will ALWAYS be available. Apparently I have consented to dedicate my whole, entire life - hopes, dreams, career plans - to their round-the-clock care, all by myself, forever. And apparently, with zero help, guidance or support, I will ALWAYS know exactly what that care entails and what is needed in any given situation, ever.
So this is what I will do.
I will cry, in secret. I will rage in online chats with my fellow Army of Special Needs Mum's. I will facilitate and enable and teach and keep house and resign all sense of self I ever had.
Because that's ok, right? Because they're not sick. Because I can do it, regardless of the consequences and long term damage it may be doing to my health and mental well being.
Because that sounds fair, doesn't it?
Merry Christmas everyone!
Yesterday we had the long, long awaited ADOS (Autism Assessment) for our Darling Daughter (aged 9). And after a number of arduous, uncomfortable hours they confirmed what Mummy has known for so long - that she is also autistic.
This was both wonderful news and a bitter blow at the same time.
I had wanted to know. I fought for the referral, God how I fought. The teachers, SENCOs, therapists, CAMHS consultants I have gone up against in the past are too numerous, hopeless and depressing to recount. Only for it to be SO GLARINGLY OBVIOUS when you actually get her in a room with the right 2 people.
But of course then the frustration sets in. The frustration at this deeply, horrifically flawed system that gives no continuity of care in this situation. As everything, it's a postcode lottery. Our county councils opinion is, if we can afford our mortgage (barely!), we can afford to fund our own care. We can't 😢
So we got another leaflet, another list of charities to beg and bother 😥 Charities who are underfunded and over-subscribed, who will immediately try to recruit you to their fundraising team and offer to add you to their mailing list (for £135 ANNUAL membership fee!)
Of course there is the Cygnet course you can go on. And who can't free themselves up for 3 hours per week (more likely 4-5 by the time you add travel, parking etc) for SIX CONSECUTIVE WEEKS, during the day, term time (when your kids with additional needs are Home Schooled because THE SYSTEM HAS ALREADY FAILED THEM!!!)
So I argued, and I reasoned. They placated with cries of what an amazing parent I am, how well informed, in tune, how facilitating, what amazing work I have done with my children, how there is no intervention above and beyond what I am giving them.
NOT GOOD ENOUGH.
What if I wasn't able to do this all myself? What about a carers break, y'know, ever???? What about if I couldn't do it? Because the day will come that I can't.
Anyone with special needs children will know that Babysitting is a foreign word!! There is a startling lack of willing offers, particularly from those nearest and dearest to you from whom you'd hoped for more.
Over the years, party and social invites will dwindle as less and less people want your unpredictable kids around, and there's nothing you can do - there's no-one ever to leave them with. Not even paid agencies 😥
So you become increasingly isolated, increasingly burdened but nobody cares. Turns out "Every Child DOES NOT Matter" - only the high achievers that affect the League Tables or the average Joe's that maintain the status quo.
Ironically my DD WAS one of those High Achievers. A full 2 academic years ahead in EVERY subject when she was at school. But the damage to her Mental Health, Well Being and Self Esteem were insurmountable. And so I refused to leave her in an environment, worked like a slave to bring up the class average, with no praise or recognition ( "because it would make the other children feel bad about their achievements!" ) and no help AT ALL for her social and emotional needs ....... because she was "intelligent enough to know how to behave"!!!!
Oh I am so angry, so angry with this system that is failing our children and young people. And will continue to fail them as adults :-(
This 'problem' will not go away.
My children are wonderful, good mannered,hard-working, self motivated individuals. They need an ENORMOUS amount of help EVERY SINGLE DAY because there are some things they just CAN'T do.........walk safely beside a road, remember to eat, drink, wash,go to the toilet, get appropriately dressed. They are now 8 and 9 1/2 and in these areas, nothing has changed since they were toddlers - they will ALWAYS need this level of prompting. What happens when I'm not there to give it? I tested the theory once - my daughter got to day 3 of not drinking anything at all, I intervened before hospitalization was needed.
But apparently this is ok. Because apparently I will live forever. Apparently I will ALWAYS be available. Apparently I have consented to dedicate my whole, entire life - hopes, dreams, career plans - to their round-the-clock care, all by myself, forever. And apparently, with zero help, guidance or support, I will ALWAYS know exactly what that care entails and what is needed in any given situation, ever.
So this is what I will do.
I will cry, in secret. I will rage in online chats with my fellow Army of Special Needs Mum's. I will facilitate and enable and teach and keep house and resign all sense of self I ever had.
Because that's ok, right? Because they're not sick. Because I can do it, regardless of the consequences and long term damage it may be doing to my health and mental well being.
Because that sounds fair, doesn't it?
Merry Christmas everyone!
Wednesday, 7 December 2016
Books, glorious books
I can't believe the first 7 days of December are gone already!
No Elf of the Shelf here, tree not going up until this coming weekend, but we are none-the-less in the Christmas spirit. We've written all our Christmas cards and posted them, I still believe (strongly!) in doing this. We've bought and wrapped all our Christmas presents - the kids have bought their own presents for family out of their own pocket money (I believe strongly in that too! Christmas shouldn't be a one-way path in to the children, I feel it's important to teach them to sacrifice and give too). They are really proud of themselves and happy with the choices they've made and the thought they've put in to choosing their presents. They've wrapped and labelled them themselves, and it means so much because they are giving something of themselves 💖
We've got our advent calendars on the go 🎄😊 Mine is a wooden advent tree, with 24 tiny wooden decorations to hang on it - bought on holiday with DH in Vienna nearly 15 years ago now, and still going strong. DS and DD bought their own advent calendars this year, I said no chocolate ones. So DS sold some of his old toys and bought himself a Lego City advent calendar, and DD followed suit and bought a cosmetics one. They are both thrilled with their choices 😊
I bought us a Book Advent from my fabulous Usbourne lady - who let me hand pick our books from a fab new range. So far we've had these beauties -
I really cannot recommend them highly enough. I'm a HUGE book fan, so it's such a treat to be reading these classics to my little book worms. We settle down for Listening Time each morning, mostly with DS curled right in beside me so he can look at all the pictures, and DD drawing at my feet. The Enchanted Castle (originally a novel by E Nesbitt) and The Canterville Ghost (originally Oscar Wilde) were both new to me and both really superb. The kids favourites so far are Frankenstein and White Fang. It sets our learning for the day as well, we've journied through the times of pirate, the Victorian workhouses to the Gold Rush and more besides! Can't wait to see what we get tomorrow!
On the subject of Books, glorious books - some of you may remember the kids and I were lucky enough to preview a friend's debut children's book earlier in the year. Well, on Monday it came in to print! Of course we were straight on to Amazon to order our copy and read again about Maud and Dragon's adventures in glorious technicolour! What struck me, receiving the hard copy in the post today, was just how beautiful Hannah Shewan-Friend's illustrations truly are. To see them all together in the finished book was really quite a humbling experience. We are so very proud of our talented friend 😊 If you have any children left to buy for this Christmas, I really don't think you could go far wrong with Inky Babble - https://www.amazon.co.uk/Inky-Babble-Hannah-Shewan-Friend/
Other things we've been doing this week include a trip to one of our favourite libraries (uh-huh MORE books!!) for DD to meet up with her best friend and work on their Lapland geography project together. They research about the Northern lights, the regions covered by Lapland and the summer's of 24 hour daylight. They decided they would work on making a 3D scene to accompany their presentation. For a first time of working together, self-led, they did really, really well. And DS was excited to find a Terry Pratchett children's book - so we booked that straight out! And, of course, he looked up what he could about his beloved carnivorous plants!
We've also been playing lots of fun games this week :-) Such as Lego Minataurus -
No Elf of the Shelf here, tree not going up until this coming weekend, but we are none-the-less in the Christmas spirit. We've written all our Christmas cards and posted them, I still believe (strongly!) in doing this. We've bought and wrapped all our Christmas presents - the kids have bought their own presents for family out of their own pocket money (I believe strongly in that too! Christmas shouldn't be a one-way path in to the children, I feel it's important to teach them to sacrifice and give too). They are really proud of themselves and happy with the choices they've made and the thought they've put in to choosing their presents. They've wrapped and labelled them themselves, and it means so much because they are giving something of themselves 💖
We've got our advent calendars on the go 🎄😊 Mine is a wooden advent tree, with 24 tiny wooden decorations to hang on it - bought on holiday with DH in Vienna nearly 15 years ago now, and still going strong. DS and DD bought their own advent calendars this year, I said no chocolate ones. So DS sold some of his old toys and bought himself a Lego City advent calendar, and DD followed suit and bought a cosmetics one. They are both thrilled with their choices 😊
I bought us a Book Advent from my fabulous Usbourne lady - who let me hand pick our books from a fab new range. So far we've had these beauties -
I really cannot recommend them highly enough. I'm a HUGE book fan, so it's such a treat to be reading these classics to my little book worms. We settle down for Listening Time each morning, mostly with DS curled right in beside me so he can look at all the pictures, and DD drawing at my feet. The Enchanted Castle (originally a novel by E Nesbitt) and The Canterville Ghost (originally Oscar Wilde) were both new to me and both really superb. The kids favourites so far are Frankenstein and White Fang. It sets our learning for the day as well, we've journied through the times of pirate, the Victorian workhouses to the Gold Rush and more besides! Can't wait to see what we get tomorrow!
On the subject of Books, glorious books - some of you may remember the kids and I were lucky enough to preview a friend's debut children's book earlier in the year. Well, on Monday it came in to print! Of course we were straight on to Amazon to order our copy and read again about Maud and Dragon's adventures in glorious technicolour! What struck me, receiving the hard copy in the post today, was just how beautiful Hannah Shewan-Friend's illustrations truly are. To see them all together in the finished book was really quite a humbling experience. We are so very proud of our talented friend 😊 If you have any children left to buy for this Christmas, I really don't think you could go far wrong with Inky Babble - https://www.amazon.co.uk/Inky-Babble-Hannah-Shewan-Friend/
Other things we've been doing this week include a trip to one of our favourite libraries (uh-huh MORE books!!) for DD to meet up with her best friend and work on their Lapland geography project together. They research about the Northern lights, the regions covered by Lapland and the summer's of 24 hour daylight. They decided they would work on making a 3D scene to accompany their presentation. For a first time of working together, self-led, they did really, really well. And DS was excited to find a Terry Pratchett children's book - so we booked that straight out! And, of course, he looked up what he could about his beloved carnivorous plants!
We've also been playing lots of fun games this week :-) Such as Lego Minataurus -
Given we are BIG fans of Lego and BIG fans of the legend of the Minotaur, this game is the best of both worlds! You can get it on Amazon - https://www.amazon.co.uk/LEGO-190721-Games-3841-Minotaurus/ but my personal advice is have a look on Ebay first. We recently bought this one second hand on Ebay (complete) for a fraction of the price.
We also picked up this little gem in a charity shop earlier this week -
Still available on Amazon - https://www.amazon.co.uk/The-Green-Board-Game-Co/ - and currently under three quid!!
A great little game, simple to play, good for reading skills and also subliminal learning as the animals are grouped together in their families - mammals, crustaceans, reptiles and so forth. Make a great stocking filler 😉
DD's been reading, reading, reading - a couple of new novels, re-reading some Harry Potters and we finally got our hands on a couple of the Goosebumps books for her to try. So that's kept her going for a couple of days, along with re-reading the Malory Towers series.
And DS has been playing creatively and inventing -
Other excitement includes our new bean bags having arrived today! Giant, waterproof bean bag floor cushions that can be sat on in a variety of ways. Sensory heaven for my two 💙 So they've ridden horses, relaxed on life rafts and belly surfed on lilo's! And, even better, they were delivered in boxes big enough to sit in! So the rest of the afternoon was spent making and watching Christmas movies in their own houses!
With books to read!
Happy, happy days :-)
Friday, 2 December 2016
Out of Africa
So, it's been a busy week for us this week.
It was our Geography Club on Wednesday, so DS & DD were busy with their projects. At the request of several children (in our suggestions box) we were doing the entire continent of Africa this month! DD decided to do a project on lions in The Savannah - and did some research in to their declining numbers and why their population has been severely depleted in the last 50 years. Then she made a 3D scene of a lioness hunting -
It was our Geography Club on Wednesday, so DS & DD were busy with their projects. At the request of several children (in our suggestions box) we were doing the entire continent of Africa this month! DD decided to do a project on lions in The Savannah - and did some research in to their declining numbers and why their population has been severely depleted in the last 50 years. Then she made a 3D scene of a lioness hunting -
DS decided he wanted to find out more about the island of Madagascar. His research led him to the island of Nosy Manitra (The Scented Island) and he settled on doing a project on one of it's volcanoes Nosy Be (pronounced Nossi Bei) -
This month he actually stood up and read out his facts, which was lovely to see as it shows he has grown in confidence with his reading ❤❤❤
We also made food for our Food Tasting table. There was such a huge wealth of choice this month - given we were covering a whole continent! We settled on 3 dishes - Mozambique Lemon Chilli Rice (delicious!), Ethiopian Cabbage Dish (gorgeous) and Cornmeal Christmas Wreaths (fiddly but worth it 😏 ) -
Mozambique Lemon Chilli Rice. Find recipe here - http://www.foodnetwork.co.uk/recipes/mozambique-lemon-chilli-rice.html
Ethiopian Cabbage Dish. Find recipe here - http://allrecipes.com/recipe/152937/ethiopian-cabbage-dish/
Christmas Wreaths. Find recipe here - http://www.foodnetwork.co.uk/recipes/cornmeal-wreaths.html
We had a lovely group session with such a range of learning - it's so great to have so many Home Educated kids come together and share what has inspired them that month. I love the variety and the encouragement the kids give one another.
Besides Food Tasting, we had colouring, crafts -
Find instructions here - http://krokotak.com/2015/11/paper-giraffes-so-easy-to-make/
And we had a group activity for the first time, rather than worksheets, for the kids to make an A-Z of Africa. This proved really popular and most of the children (and parents) dipped in and out of the activity, adding their input. It was a really great way to draw together and reinforce all the learning -
DS can struggle a lot with Geography Club, due to the noise in the hall and numbers of people, but his projects have been going from strength to strength and he is gaining confidence month on month, so I have persevered. We have a really lovely group of regulars now who are such a pleasure to meet and learn with. He really considers them all his friends and said this week was his Best Geography Club ever! It was the first time he actually sat and did the craft (through to completion). He also joined in with the A-Z activity, looked through the projects on the Sharing Table and loved seeing some real African carvings one family had brought in.
There's lots more news from our week, but given DD has her bestie over tonight for a wake-over (officially known as a sleep-over but not sure any actual sleeping will get done 😄😄 ) so I'll sign off for now xxx
Thursday, 24 November 2016
Trusting your judgement
So, how's the autumn treating everyone?
Wishing a very Happy Thanksgiving to my American friends, whether here, at home, or around the world :-)
And closer to home, are we mentioning the C-word yet???
I, for one, am VERY excited :-)
But in the meantime there's still November to deal with. And I must admit today was Not my finest hour........
I got myself quite frustrated this morning trying to engage DS in 'doing some work'.
I don't even know why I did this!!
Some days we are so on the ball, the learning just flows and we don't 'stop' for weekends etc, if the kids are engaged in something we just carry on. So why on earth I suddenly had this wobble of confidence this morning I don't know but I decided to wade in to battle and insist he do some comprehension work (his absolute nemesis, and the cause of endless trauma at school).
Oh dear me Mummy - you fool!!
I think, flushed with the success of yesterday, and the fact we had an AWESOME day of Life Skills, I mistakenly thought today we needed to 'evidence' that his learning was 'on point'. Also, I think because the C-word is around the corner, I know we will be relaxing our learning and doing all things Christmas and I think I just had a moment of November-madness that I had to prove we have 'done enough'!
This Was STOOPID!
But, he sat down with me. My sweet boy who wants to please.
He wanted to do Maths. He wanted to make his Madagascan volcano for Geography Club, he wanted to research carnivorous plants, he wanted to do Scratch programming on the computer....... but I was on my "but you've also got to show you can do your written work" drive :-(
Wrong battle, wrong day.
The dear boy sat and conceded to do 6 pages of a comprehension work book, by himself. Just 10 minutes of reading and following the instructions and the stress overwhelmed him. Comprehension tasks are such an issue for him - due to delayed processing, communication difficulties, lack of social understanding and so on. These are ALWAYS going to be an issue for him. Why oh why did I try and push him in to an NT mold today???
Quickly I realised the error of my ways just as he dissolved with a "you're going to give me loads of crossings out."
I was mortified! All the stress I've fought to take him away from, all my resolves to be more open to child centered learning and my brain tricked me back in to the conventional thinking that progress can only be measured in proven results (or even that it needs to be measured and proven at all!)
So, we consigned the book back to the book case and got out the Lego box instead. We tried making carnivorous plants and a greenhouse for them. We gathered rain water for his Venus flytrap. We fed his tortoise. We took DD to gym, and while she did her British Gymnastics Level 4 badge (yay!) we played chess, a balancing game and played with the Story Cubes Https://www.Amazon.co.uk/StoryCubes
(These are a great, fun, handbag size take-along mainstay for us. Different sets of 9 six sided dice you role and make a story from the pictures/symbols you roll).
He wandered and chatted to a few friends, ate his packed lunch, lifted his sister off the floor in a celebratory hug when she passed her Level 4!
We came home, he worked on his Scratch programming, we watched Walking with Dinosaurs, cuddled, had tea together and finally, FINALLY, the I-don't-feel-well My-neck-hurts started to subside.
And now, nearly 10 hours after Mummy's totally misjudged enforced learning attempt, he is peacefully tucked up in bed, trauma assuaged.
And the moral of the story is? You are enough. You are doing Enough. Your kids are learning ENOUGH. Whenever, however you approach your Home Learning, you Really Do know your child BEST. League tables Do Not.
So keep doing what your doing (or not doing) and don't let the World, the nagging doubts, the fears engulf you. This journey is as unique as our children. And that's ok. That's more than ok. So sit back, and watch them shine.
xxxxxxxx
Wishing a very Happy Thanksgiving to my American friends, whether here, at home, or around the world :-)
And closer to home, are we mentioning the C-word yet???
I, for one, am VERY excited :-)
But in the meantime there's still November to deal with. And I must admit today was Not my finest hour........
I got myself quite frustrated this morning trying to engage DS in 'doing some work'.
I don't even know why I did this!!
Some days we are so on the ball, the learning just flows and we don't 'stop' for weekends etc, if the kids are engaged in something we just carry on. So why on earth I suddenly had this wobble of confidence this morning I don't know but I decided to wade in to battle and insist he do some comprehension work (his absolute nemesis, and the cause of endless trauma at school).
Oh dear me Mummy - you fool!!
I think, flushed with the success of yesterday, and the fact we had an AWESOME day of Life Skills, I mistakenly thought today we needed to 'evidence' that his learning was 'on point'. Also, I think because the C-word is around the corner, I know we will be relaxing our learning and doing all things Christmas and I think I just had a moment of November-madness that I had to prove we have 'done enough'!
This Was STOOPID!
But, he sat down with me. My sweet boy who wants to please.
He wanted to do Maths. He wanted to make his Madagascan volcano for Geography Club, he wanted to research carnivorous plants, he wanted to do Scratch programming on the computer....... but I was on my "but you've also got to show you can do your written work" drive :-(
Wrong battle, wrong day.
The dear boy sat and conceded to do 6 pages of a comprehension work book, by himself. Just 10 minutes of reading and following the instructions and the stress overwhelmed him. Comprehension tasks are such an issue for him - due to delayed processing, communication difficulties, lack of social understanding and so on. These are ALWAYS going to be an issue for him. Why oh why did I try and push him in to an NT mold today???
Quickly I realised the error of my ways just as he dissolved with a "you're going to give me loads of crossings out."
I was mortified! All the stress I've fought to take him away from, all my resolves to be more open to child centered learning and my brain tricked me back in to the conventional thinking that progress can only be measured in proven results (or even that it needs to be measured and proven at all!)
So, we consigned the book back to the book case and got out the Lego box instead. We tried making carnivorous plants and a greenhouse for them. We gathered rain water for his Venus flytrap. We fed his tortoise. We took DD to gym, and while she did her British Gymnastics Level 4 badge (yay!) we played chess, a balancing game and played with the Story Cubes Https://www.Amazon.co.uk/StoryCubes
(These are a great, fun, handbag size take-along mainstay for us. Different sets of 9 six sided dice you role and make a story from the pictures/symbols you roll).
He wandered and chatted to a few friends, ate his packed lunch, lifted his sister off the floor in a celebratory hug when she passed her Level 4!
We came home, he worked on his Scratch programming, we watched Walking with Dinosaurs, cuddled, had tea together and finally, FINALLY, the I-don't-feel-well My-neck-hurts started to subside.
And now, nearly 10 hours after Mummy's totally misjudged enforced learning attempt, he is peacefully tucked up in bed, trauma assuaged.
And the moral of the story is? You are enough. You are doing Enough. Your kids are learning ENOUGH. Whenever, however you approach your Home Learning, you Really Do know your child BEST. League tables Do Not.
So keep doing what your doing (or not doing) and don't let the World, the nagging doubts, the fears engulf you. This journey is as unique as our children. And that's ok. That's more than ok. So sit back, and watch them shine.
xxxxxxxx
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