What We Do All Day

Argh!  So DH has done that classic move of arriving home (late) from work and super hyping the kids up.......... So while he calms that storm, and tries to get it ready for pre-bed quiet time, I have scuttled off to Blog in peace ;-)  Well, relative peace (I can still hear the shouting!)

I wanted to do another post about What We Do All Day. For several reasons - namely that we are constantly asked lol!

When we first started HEing we were very structured in what we did.  DD especially struggled with the transition, and although both kids had WANTED to come out of school, they also needed time and familiarity to adjust.  We didn't formally unschool - although we did exit the system a few weeks before the summer holidays - so we indulged ourselves with a nice long summer.  But when 'back to school' time came (there was no getting away from it, with Back to School ads on the TV every 12 seconds!) (and every shop touting it's school-related wares all summer long) the kids needed the familiarity of routine.

So, back at the beginning, we had Spelling Books, Reading Diaries and lots and lots and lots of planned, structured learning (thanks mostly to http://www.twinkl.co.uk/ - who were definitely our mainstay that first year). 

But over time we have moved away from the whole 'lesson' feeling.  I won't lie, DD's spelling has slipped back a bit - purely because she doesn't do the sheer volume of written work she once did. But a gentle reminder and she's back on course.

And as for reading - well, since Christmas she has read 11 Goosebumps books, Harry Potter & The Philosophers Stone, Series 1 (8 books) of My Sister is a Vampire, The Railway Children and is about to start of The Box of Delights :-)

For DS spelling is more of an issue.  As is writing, as is reading.
The curse of Phonics (don't even get me started!) has left a horrible legacy in him and he is still struggling to separate his sounds 'ai' 'ea' etc from actual spellings.  We used to do all sorts of practicing and spellings and he became more and more stressed and resistant, so we stopped.  We also stopped with the Reading Diary.  And I stepped back to allow him the space the find his confidence again.  And he has.  His Beano subscription has brought him on wonders, it really has. He so looks forward to it being delivered every week and he really ENJOYS reading it.  And that brings me joy, that he ENJOYS reading again - rather than feeling stressed and compared and made fun of.  This afternoon he picked up a chapter book, fluently read the back to me and said "Hey why don't we get this one, it sounds good!"  Well, of course I played it casual and was all "oh yeah, ok I guess, sure why not" when inside I was cartwheeling over the late returns!!

And when he wants to, he can write really beautifully now.  There's no doubt it's below age expectation, it's definitely below what DD can currently produce, but he this was still the case when he was IN school.  It's slow.  It takes ALOT of concentration. It takes ALOT of coordination. It is quite fatiguing for him.  It's also not in cursive.  You know what, I couldn't give a fig ;-)  Wait for the next change in Education Secretary and I bet THEY won't be writing in cursive any more either lol.  But he can do it when he needs to. For example, when he decided to write this book recently -

So I'm happy with what we do and how we do it with regards to reading, spelling and writing.

For maths we tend to use Workbooks. This is because maths is NOT my forte! Thankfully it is DH's and it is the kids!  They have also started having maths lessons with a fellow HE Mum once a month to boost their maths skills.

For science we use workbooks, You Tube, trips, workshops and STEM activities such as the Dyson foundation STEM challenge cards (Download them for FREE here - http://www.jamesdysonfoundation.co.uk/).

We also do Listening Time several times a week (most days we are at home basically).  This involves the kids brining quiet activities to the lounge - Lego, drawing etc - which they can play with while I read from non-fiction texts.  We then discuss what we've read - sometimes we do a write up or an activity like a mindmap of The Battle of the Somme or a write of whether they would rather be a child now or in Tudor times, from what we've read.  Other times they draw pictures, or we try food or recipes from something we've read - a religious festival for example.

Other ways we learn are at a couple of groups we have set up.  We run a monthly Geography Club for HE families in our area. We choose a country of the month, from the suggestions box, and the children research and prepare something to share on that theme. They can do a Show & Tell or add their work to the sharing table for others to view.  Afterwards we provide related crafts, activities and food tasting all linked to the country we are studying and the children are free to participate in as much or as little as they wish.  We have about 15-20 children a month, with parents, and it's a really positive experience for the children as they get to hear each others ideas and interests, and they are very encouraging of one another.  Ages range from 5-15.

We also host a Learning Group once a month in our home. This is basically a Co-Ed we've set up with 3 other families.  The Mums take it in turn to 'teach' a session - the kids have scrapbooks and get actively involved in their learning -

So far we have done Rainforests, Tessellation Art, Christmas Activities & Birds.  Next month DS is going to be leading the session - on his beloved Carnivorous Plants!  We do an hour's learning session, followed by half an hours calm play while us Mums have a cuppa.  It's a really lovely format and is working well.  Again, there is a wide age range - 5-10 years of age, 6 children in total - and it's lovely watching their friendships blossom and them looking out for each other, supporting and encouraging each others contributions.

Apart from this we attend a weekly HE gymnastics class, and fortnightly Multi-Sports Club in the warmer months where the kids have learnt Basketball, Rounders & Archery to name but a few!

DD has a monthly recorder lesson. They both used to, but only DD wanted to continue.  They also both tried guitar lessons but, although their teacher was superb, it was too complex for them so they decided not to continue.

DD is also about to start monthly art lessons with a tutor, and they'll both hopefully be working towards the next level of Arts Award this year, having completed their Discover level last year.

We also leave LOTS and LOTS of Lovely SPACE. Space for the kids to think, to explore, to create, to be.  It is more than a year since I have heard the words "I'm bored".  We do occasionally get "I don't know what to do" - when I will offer suggestions, or they will turn to The What Next Box.  But they are never bored any more - because the world is their oyster.

We don't watch TV during the day. It stays off until 4pm when they are allowed an hour before dinner, that's all, none after.  They have no electronics, at all.  We have a family computer, and I have a Kindle etc which we sometimes use together for research etc.  And they do programming with DH on Scratch.

Other than this we play, see friends, play games, go to parks, walk, talk, read, hang out, BE.  We visit places of interest. We go on trips and workshops with other HEers. We see our friends. We live our lives :-)

So I hope this helps answer the question of what we do all day :-)  And I hope it shows how achievable and sustainable it is.  Jump in, give it a try ;-) xxxx

Why I Don't Think My Children Were Vaccine-Injured

This morning I have definitely got my Ranty-pants on, so I have decided it's time for This post.

I am a Mum.  I am an Autism Mum.  I am a Warrior Mum.

I am not a subscriber of Vaccine Injury theory in the specific context of autism.

Let me clarify.

I believe everyone has the right to their own opinion with regards as to whether or not they vaccinate their child/ children.  I believe that vaccines will undoubtedly have a percentage of cases where they fail, and where side effects may sadly be catastrophic.  This is the case with all medicines.  We are all playing a game of chance, and my heart breaks for those whose loved ones are harmed by side effects. Truly.

However, I do not believe vaccines categorically cause autism. 

I don't believe there is an autism epidemic. 

It is not a disease. 

It doesn't spread.

It isn't 'caused'. 

It is not environmental (although there are many similar 'looking' things that can be). 

It is neurological. 

And it is as genetic as the colour of your hair.

What upsets me - is some anti-vacciners and their scare mongering. 

By all means raise awareness. By all means share your personal view.  But don't tout it as proven scientific fact. And don't vilify autism families with it.  Please.  Just don't.

For me it has been a long and arduous journey to get my High Functioning (shudder - HATE that term!) children diagnosed with Autism.  I KNOW there is so much more to the story - there are a number of other elements and conditions in their mix, as well as Autism itself being an almost unquanterfiably large spectrum.  I also know the diagnostic tool in this country is sadly lacking - it is reliant on human opinion, which is inherently flawed.  I have had 2 very different experiences of the ADOS experience - one was heavily led and prompted, which I feel obviously had an impact on the result as a child with high functioning ASD is going to respond better in an environment where they receive prompting than if they don't (pretty much my whole life is spent prompting! That's kinda the point, y'know?  Without prompting they wouldn't get it, ever....)

Anyway, I digress.  The point is, it's a long hard battle.  You face ignorance, disbelief and discrimination.  It is frustrating, desperate and, at times, very, very lonely.

What we don't need is blame.  What we don't need is fear surrounding our children.  What we don't need is naïve, well-meaning parents telling us "we're so thankful our child didn't turn out like yours. That's why we didn't vaccinate."

Ouch!

Double ouch!

You get the idea, yes?  And people DO say this to us, all the time. In very real and unsolicited ways.  And it's not ok. 

By all means have your opinion. By all means share it, sensitively.  By all means research and find actual facts to support what you believe (very few people actually do.  Mostly their research consists of someone's Facebook page or someone they follow on Twitter.... so it must be true, sigh!)

But don't approach me and ask what I think CAUSED my children's autism.  Or if you do, know you may potentially be met with the counter question of what do YOU think caused YOUR a) stupidity b) ignorance c) rudeness d) lack of boundaries e) all of the above  (delete as appropriate).

And PLEASE do not assume that because my child is autistic that I want to hear your views about vaccination.  I don't.   I would love to hear what your child likes to do, your favourite places to go, what music you like or what you have been watching on TV.  I would even be happy to talk about the weather, queues or anything else terminally English.  We can even talk politics and religion! But I do not want to discuss the intricacies of my child's neurological pathways with you as small talk.  It isn't small talk. It's Great BIG talk.  And I reserve it for discussion with fellow Warrior Mums (and Dads) and the autism community.  Because, honestly, they are the ones that are going to understand.


So, if you are outside that community, by all means get involved. Further your knowledge. Join hands to raise awareness (or maybe just stand near us but without touching because, y'know, autism..), but don't stand in judgement and tell us what you think we did wrong.  You haven't walked in our shoes. You really, Really don't know.  And just because your Mum's friend's, neighbour's, hairdresser 'had an autistic' - you still REALLY don't know.

And it's ok that you don't know.  Just don't come and sit at my table and tell me you do.

The End x

Learning with Friends

So, today has been a GOOD day :-)

We started out putting our Geography Project on Italy together -

ready for our Geography Club next week.  We've done the actual country Italy, Pompeii, Roman soldiers, Venice, the Italian language, food, indigenous carnivorous plants and the Italian Gardens of Verona!  Oh, and of course the Italian flag!

The rest of the day we have spent learning together with other Home Educated friends at our home.

For the first time today we starting out with a Book Group - the three of us and DD's best friend (a fellow 9 yr old girl), her Mum and her brother (aged 7).  It was the girls idea. They were both lucky enough to go to a great Home Ed Book Group at a local library last year, which they both really enjoyed, but both are a little shy and intimidated in big groups so they asked if they could try doing a little something by themselves.  We talked about Harry Potter (namely the illustrated version of The Philosophers Stone), Percy Jackson - DD's bf had written a play version of one section.  DS popped in to join us (yippee!!) and decided he would talk about The Beano - he even read us a couple of stories aloud.  My fellow Mum was astounded at how much his reading had improved since she last heard him read and how he was using tone and emphasis in his reading aloud.  It was SUCH a joy to hear.

I talked about one of my favourite books from when I was a child - A Necklace of Raindrops by Joan Aiken.  (Get it here - https://www.amazon.co.uk/Necklace-Raindrops-Joan-Aiken/ )
It's a really lovely book of short stories that I discovered when I was about DDs age and remains one of my all time favourites, to this day.  I've read them with my own children countless times but it was a treat to share this with others too.

We then took a short wiggle break before my fellow Mum gave DD a recorder lesson, while the other three happily played Lego together.

Another break for DD after her recorder lesson, and then she had a maths lesson, also with fellow Mum - while I played Sleeping Queens with the others.  Absolutely great little game by Gameright.  Colourful, visual, a few plot twists and lots of lovely stealth maths :-)   (Get it here - https://www.amazon.co.uk/Gamewright-Sleeping-Queens-Card-Game)

We took a break and all had lunch, and DS even consented to giving a maths lesson a try.  He was hugely reluctant, and even managed to verbalise that he was afraid it would 'feel like school' but he managed 15 minutes before he asked to stop.  His request was respected and he was allowed to go and play.  I am just thrilled he was willing to give it a go.  I'm learning not to force the issue now. Like with his reading, he has shown he will get there on his own when he is ready.

Then in the afternoon it was time for our Learning Group.  We host this monthly at our house, with 3 other Mums and 4 other children (sometimes 5).  The ages of the children range from 5 - 10 and the Mums take it in turns to lead a session.  So far we have done Rainforests, Tessellation Art and Christmas.  This month we were doing Birds -

This included talking about our favourite birds, native birds. Looking at the all different types of birds and aspects of birds life - what they eat, camouflage, birds that are named after their song.  We also put out some food and did out own bird spotting.   The group then tried to make an A -Z of birds (we've started using the A - Z activity regularly for topics - it's a great way to draw together all the learning and groups of children can participate together).  We (almost) managed every letter!

After this the kids all had half an hours play together before home time.  It was beautiful to see them - a 10 year old helping a 2 year old do Lego, a 7 year old chatting to a parent about his inventions, an 8 year old explaining to a 5 year old (with diagrams) how to build things in Minecraft and two 9 year old girls playing Harry Potter trivia together.   And 4 Mums enjoying a hot cup of tea and a peaceful chat :-) 

I am SO pleased we took a chance on setting up this group and that we have such an awesome group of hands on Mums, and children, really bonding and learning together. They all contribute to the lesson with their ideas and encourage each other in their endeavors. It's such a positive, patient little group, it's really lifted my spirits today to see how much they achieved together and how pleased they were to all be together again after the Christmas break and how much they're all looking forward to the next session already. 

Good Days Bad Nights & Everything Inbetween

We're really enjoying a peaceful At Home week this week.  Yesterday we had a fairly late start, after a very unsettled night.  I don't know if my fellow ASD parents out there find this, but whenever we have a Good Day (and Monday was an exceptionally Good Day) it is inevitably followed by a Bad Night......  The pervasive thoughts attack, the worries bubble overwhelmingly and it all comes crashing down around them. The Happy, the Good, the Positive are as hard for our little warriors to manage as the woes of this world.  So we had a night of bedwetting, terrifying nightmares, night wandering, much crying and more. 

So Tuesday was a late start. But Mummy had in mind that we would go to the local lake for a nature walk and by George we were going to do it! Lol.  The kids were reluctant but the promise of a bag of chips to eat on the way was enough to persuade them into their wellies and out the door.

It wasn't Mummy's finest plan because eating a bag of chips while walking along requires a neurotypical amount of coordination!!  So by the time we arrived, things were fraught to say the least and a particularly 'keen' swan eyeing our bread (well cereal actually as you're not meant to give bread, are you?) was enough to push DD over the edge into a chaotic, frenzied, silent tantrum.  She doesn't have meltdowns as such (like DS does) because she has ZERO emotional language - at all. Infact, she doesn't recognize emotion or feelings, pretty much AT ALL. So if she feels - anything - she will pretty much spiral quite alarmingly quickly into a frenzy.  She cannot distinguish feelings in herself, identify or name them. So she reacts as a pre or non-verbal child would - with her body, and her reactions.  So this is what she did....   It was, sadly, the worst thing she could've done in the situation IF indeed it was the swan she was scared of - as she ended up covering herself in a scattering of cereal in her frenzy which only served to make her even more of an attractive prospect to both swan AND seagulls!!!

But we cleaned her off, moved her out of harms way and carried on with our walk - because, well, what else can you do? 

I gave her my camera, to occupy her hands (and mind) for a while and she managed to get some nice pictures of the birds -

Then, on our walk back home we were rewarded for our perseverance with a Kingfisher!  We all love birds, so we were beyond excited about this (Mummy especially as she has always wanted to see one!)  It was truly majestic and he generously dove for us 3 times before disappearing off to his hole.  I was clearly not the only one moved by this, as DD drew me this when we got home -

She continued to have rather a chaotic day - lots of crawling and antagonistic behavior but all sort of low level disruption.  Lots of silent 'look at me' behavior - general abated by a bit of tickling, a roll around or some sensory intervention.  Thank Heavens for this wall DH built over the summer holidays -

Yes, it is effectively a climbing wall up our stairs.  We originally installed it with DS in mind, as he struggles (due to Hypermobility) get up and downstairs - to the extent he had managed to pull the embedded handrail OUT of the Wall due to over exertion!  We went to the Help Shop etc but all the solutions were so 'disabled' :-(  And he felt very sad and self conscious.  So we thought of hand holds, so he could pull himself along but not feel embarrassed - as it made it more like 'play'.  This evolved in to the climbing wall - and thank goodness it did as DD must go up and down that thing 10-20 times a day! It has HUGELY improved her behavior, her chaotic-ness and given her valuably sensory stimulus she desperately needs.

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And today is a different kettle of fish.  DD is more settled, despite another Bad Night, but DS has a VERY Busy Brain today - so everything feels quite exhausting.  Lots and lots of repeating single task instructions (over and over and over 😉) and not able to settle at anything for long (read that to mean AT ALL lol!)

So despite our visual prompt aids, and Mummy being constantly on hand to manage everything, it has still taken until 11am for him to have his breakfast today!!  In the meantime, we did manage to classify some of his rock collection (using an Usbourne set of cards he got for Christmas) -

But don't be fooled - this activity took over an hour and involved an unquantifiable amount of getting up and down from the chair/ table, rolling around the floor, throwing himself in to the door frame, clucking, yelping and jumping up and down. Because, y'know, that's how we roll - literally 😆😆

Meanwhile, DS was working on things for our Italian project.  So she was trying her hand at speaking some Italian and getting various phrases translated on Google.  She made a little crib sheet of words, the actual translation and a pronunciation guide.  And we all (DS included!) had a go at speaking some Italian!

DD suggested we do something on the ancient Roman Gods as part of the project - so we dug out some of the resources we had left from when we studied Romans last year.  Luckily we still had some fab stuff from Twinkl (http://www.twinkl.co.uk/) so she did this fun Roman Numerals Colour by Numbers.  I made her a list of the Roman Numerals (as, annoyingly, it didn't come with one!) and she enjoyed figuring out the key.

Throughout these, I tried repeatedly to either engage DS in contributing to our Italy project, or suggesting he go and play if he was finding it too difficult.  He obviously is as he has asked me repeatedly for his DS today, or to watch TV, neither of which I allow (as a general rule) during 'school' hours.  He has settled now to playing Lego on my bed as I type this 😀😀

Anyway, he couldn't decide what he wanted to do with regards to Italy. Myself and DD made numerous suggestions but they were all not quite right.......  The only thing he want to think about, learn about, talk about was Carnivorous Plants (this is his current obsession!) But, whaddaya know, we managed to find some species, indigenous to Italy!!  Hurrah -

Whoop whoop!!  So we will be adding that to our finished project 💞

We read a few chapters of our Goosebumps book after lunch, and DS read me some of his Beanos!  He LOVES his Beanos - we bought him a subscription as this boy WILL NOT read Anything (except Minecraft books!) but turns out he LOVES a Beano - and the artistry is so brilliant and vivid that he 'gets' a lot of the jokes - which is just, sigh, amazing!

And now it's 'break' time (after lunch Mummy normally has some time that is hers and they are free to pursue their own - non-electronic! - interests 😊).  DD is, of course, Harry Potter colouring - whilst simultaneously trying to dress as a cross between Luna Lovegood and Viktor Krum!  And DS is at my feet playing Lego and tick, tick, ticking away peacefully.  Love them 💘💘

Bringing back bedtimes

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 :-)

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!

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? 😆