Asperger’s Syndrome – The Wrong Kind of Snow

Help?!

In which help is required, and two schools take very different approaches to providing it.

We don’t do neurotypical in my family. As well as Pearl, we also have a son with Aspergers. It’s fair to say our school experiences with him have not always been positive.

Differences were apparent throughout Primary school, but as he hit year 6 and the pointless SATs, his stress levels began to rise exponentially.

His school had just been through a particularly unpleasant Ofsted inspection, and as a result staff stress was high, and the pressure to ensure all achieved, made the tests much more of a focus than they had previously been.

Rab (as he is known in the blogosphere) was having ‘tantrums’ (yes, before diagnosis we thought he was acting up) and was becoming very sad and withdrawn. He also experienced frequent stomach aches.

Busy with Pearl I had put Rab’s previous anxieties down to being a sensitive soul and mildly eccentric (oh my boy I’m sorry) I had not realized that the daily trauma of trying to fit into a neurototypical world, was frazzling his autistic sensibilities.

Finally as depression began to bite him and suicidal ideas were voiced I took him to the GP. Twice. And was told twice, that I was overmedicalising the situation.

I do hope the fact that I’m known to live with depression did not cause our splendid GPs to feel I was over reacting. I do hope so. They told me he could be refereed to CAMHS but the service was so busy I probably wouldn’t get an appointment, and that the referral needed to come via school.

Some background. At this point I had had children at this excellent primary for 9 years. I loved it. I had been Chair of Governors and knew the staff. School had participated in a study Rab had been part of when he had been diagnosed with anxiety disorder. I asked his class teacher if she would refer to CAMHS with the help of the school nurse.Transition to High School was approaching. The holidays were looming and I was very, very concerned. I needed help.

On the very last day of school, having heard nothing, and assuming it was all in hand, I asked the class teacher,

“have you heard anything from CAMHS?”

“I’ve discussed it with the Head who feels it would be better coming from his High School”

The High School that hadn’t met him, that did not know his peculiarities and strengths had not seen his ‘tantrums’ in action.

I share this, not to shame the school. It was otherwise excellent. I think in retrospect, Ofsted stress and end of term frenzy all played a part. I also think they had a lot of work to do on training and awareness of Special Needs in general and Autism in particular, which I’m sure has since happened, as they have an experienced Governing Body and a new Senior Leadership Team.

No. I share this in order to show you what busy, overstretched schools are often like, taken up by all the gubbins that Government throws at them, and the admin required more related to school performance than pupil (and teacher) satisfaction.

And now I give you the alternative.

This Monday we had an excellent morning in Horton watching Pearl and her class mates swim, before witnessing the opening of the new school swimming hoist! (Things are a little different in Special Ed! ).

As I left I was grabbed by one of the staff, not Pearl’s teacher, and who in fact has never taught Pearl, although she enjoyed a weeks residential at an outward bound centre (more of this tomorrow!). Pearl is an experienced user of the PODD communication system.

“Jane”

Said this astute individual.

“I’ve been watching Pearl use PODD and I think she is ready for a more high tech version-what do you think?”

Chat followed, and we both agreed.

“Well then, I’ll refer her on to the Specialist Centre, we’ll do it now because we have all the information from knowing Pearl. It will take High School a while to see how she communicates, but we already know”

Two schools both excellent.

One with Classe of 30 + can’t take the extra work and hasn’t spotted an issue.

Another with high staff to pupil ratio, and freed to think inventively about achieving curriculum goals has volunteered information based on pupil observation, and initiated extra work under pressure at a busy time.

All I can say is that if I was a teacher, given the choice, I’d work in Special Ed.

If I ran the Government (and frankly I’m a little too busy to take it on) all schools would have a diversified curriculum and measuring and testing would have low priority at Primary level.

I suspect that pupil mental health would be positively impacted, and teacher burn out greatly reduced.

But what do I know? I’m only a mother.

Come on Secretary of State for Education, lets all #bemorehorton.

This is part of a blog a day for Horton.Any opinions are the authors and does not necessarily reflect those of the school.

Help Pearl leave Horton Lodge PFSA a huge thank you, here.

A blog a day for Horton

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Giving Me The PIP. The Politics of Disability

Politics.It’s everywhere.You wait around for a General Election and then two come along in quick succession.

So how do you vote? Follow your family, stick with your tribe? is anything that goes on in Westminster relevant to the daily grind anyway?

Yesterday I was minding my own business, parenting and such like, when politics came up and slapped me hard across the face. I took my son to an assessment to see if he qualifies for PIP.

I’ll explain.Once there was a boy who was little eccentric and rather old fashioned. He muddled along with friends in the school system until Secondary School, or “living hell” as he preferred to call it. Becoming extremely angry with violent outbursts in school, he would tear his clothes swear at teachers and have to be physically restrained.My boy became suicidal, self harming and desperately,desperately sad. Eventually he was removed from school, provided with a tutor for 18 months, and placed in a Special School for children with autistic spectrum disorders.

The boy had secretly been harbouring Asperger’s, and his otherwise remarkable (and modest) mother simply hadn’t noticed it.

The care needs at the time, related to the Asperger’s and his depression,were significant. As a result we received Disability Living Allowance. This was easy to apply for (hollow laugh) and only required the filling in of a colossal form with appended information from all his healthcare team and his educational statement.

When politicians get a bit bored, they look around for something to fix.When they want to impress the voters, they like to show you they are saving you money

For this reason (Insert Fanfare) The PIP or Personal Independence Payment was born! See how it removes the word ‘disability’ from its title replacing it with the hipper “independence’. Marvel as all the disabled people who we all know are ruthlessly draining the countries finances (unlike for example, large coffee chains or internet delivery warehouses) are sorted into “properly disabled” and “scroungers”

Anybody needing assessment will now be assessed by form, frequently followed by a one to one assessment in person, carried out by ATOS. At 16 all current recipients of DLA are also reassessed.

I find myself then, far from home with a young adult on the autistic spectrum, who fears change, gets stressed about meeting new people and has significant sensory issues, related to noise,crowded areas and being assessed.

I have never been anywhere quite like this centre. It is large and clean, and that is truly the only positive thing I can give you.

The chairs are in rows in front of a screen displaying colourful, friendly logos about what the assessment will contain. Despite all this there is the same smell of fear and despair you find in a vets waiting room.

Periodically someone comes and calls out a name, very quietly from the back of the room. It is packed with people waiting with ‘companions’ and we wait for 45 minutes for our turn, at which point we are taken upstairs to a room. There is a stairlift, but we are told that we need to be able to get down the stairs independently in case of fire.

Access wise so far then, we have the difficulty of getting there, the strain of hearing or understanding your name, and the inaccessibility of fire exits. Forgive me if that seems a little peculiar for a place likely to be assessing people with needs, but it is what it is.

Upstairs we meet a perfectly pleasant Health Professional. I do not know what her specialism is, but I suspect it has something to do with form filling and typing. In 45 minutes she questions Aspie boy who is by now, in an extremely agitated state, takes most questions literally and looks more distressed than I have seen him in some time. I have to discuss in front of my mentally fragile young person, the suicidal ideation he suffered, the lack of school support, the Psychiatric input, my locking away of knives and drugs. All this to a stranger we had just met. This does not appear to aid his mental state.

The assessor is supportive and impressed with how far he has come, but has no idea if he will be eligible, having to send the report to the DWP to use as an assessment tool. We have leave to appeal if it doesn’t go our way.

You may glean that I have some problems with this process, how astute of you!

I absolutely believe that governments should be held accountable for how tax payers money is spent. I do think we should minimise fraudulent claims, and encourage independence as far as possible.I suspect that there may be better ways of doing this.

For example, what if the DWP used medical information provided by medics who know the person well? How about school or Psychiatric reports? Does reinventing the wheel and adding another layer of assessment really save money? How much do the centres cost to run, clean, heat staff and light?Is this money offset against the colossal savings made by removing the fraudulent claimsters? Should centres be accessible? Do the Authorities realise that being disabled is not a choice? It does not discriminate. It could be YOU!

I found the whole situation shocking. It felt like a processing plant. It was dehumanising, to see people coming in with crutches and walking frames ready to be assessed to see if they really needed them. It infantilises people, and discredits the existing medical and social care professionals. It breeds the idea of disabled scroungers living off the stage in the public mind, and discourages inclusion as a result.

I want to believe this was not the intention of Government when it was introduced.I truly want to believe that everyone in our society is valued equally. I strongly advice you not to become sick or carelessly acquire a disability.

Please consider this when you vote, but most of all, please vote!

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Caravan.

In which we make a spontaneous purchase and holiday happily ever after.

It may not be evident from the blog thus far, that I am a bit of an outdoor girl. Much given to running, especially through mud and on hills, and walking, whatever the weather. You may think then, that I am probably a happy camper. What’s not to like about camping? Take yourself wherever you like at a moments notice, pitch up and run, walk, picnic at your leisure. Sorted.

This dear reader is to misunderstand my needs entirely. I exist somewhere between not caring at all what I look like, and never leaving the the house without full make up. I also wear contact lenses. My firm belief, that we as human beings can only live our happy, first world lives due to an amazing sewage system and indoor plumbing, is I’d argue, supported by recent history, and half the world’s first hand experience.

Why you would put yourself under canvas in a field for fun is quite beyond me. Add in a girl with significant learning difficulties, no sense of danger and issues (ahem) with continence and you’ll understand why camping is not on our agenda.

Years ago when Methuselah and I were young, I used to go on holiday in a ‘static’. A Mobile Home that was neither mobile nor homey. It did however have flushing toilets and running water. Big tick.

On a trip to our local Carers Trust funded static, we did not expect much more. How wrong we were. I have lived in much, much, worse permanent housing than this. It had a proper shower! Double glazing! Central Heating! A fitted kitchen which was nicer than the one in my house!

So gentle reader you find me this morning, in the warm, in my PJs with microwaved porridge, a cup of tea and wifi. In my caravan. Reader we bought one.

There is a little corner of North Wales we regularly drove past, rushing to get to Conwy, Snowdonia or Anglesey. It is just over an hour from home, and about 30/40 minutes from all the above. It has one of the most glorious, unspoilt, sections of beach this side of Northumberland and if you are very good I’ll tell you where it is.

On a Friday, when I have wrangled work, rare diseases, Local Authorities, Aspergers, and pre A-level teens all week, we can jump in the car and emerge a little later (approximately 2.5 episodes of the podcast No Such Thing as a Fish) at our own bolt hole. We have three bedrooms, two bathrooms, Netflix, and Broadband. It is the caravan of dreams.

The next morning I can be up, bundled into running clothes or with boots and dog in tow on the beach. I can see sea, a lighthouse, the Great Orme,the Wirral and sometimes Liverpool-although a local tells me if you can see Blackpool Tower clearly it means rain is on the way. Surrounded by sand dunes, unbothered by promenades or piers, this is Talacre Beach, which runs into Gronant Dunes, an SSSI. Talacre itself has a photogenic lighthouse, and a small friendly main drag, basically two small arcades, one shop, a Café, pubs and an awesome baker and ice cream shop. In short everything you need for a proper day at the seaside.

Our caravan (which I should call ‘holiday home’ apparently)is on the lovely Talacre Beach Holiday Park. It is small and friendly too. There are 3 small parks for owners only, and one with holiday rentals. It’s pretty, well landscaped and quiet. There is a bar and restaurant, and if you want bingo and cabaret (we don’t) it’s there. There is the Go Active programme with kids clubs and sports all included if you are an owner. A small, well equipped gym is on site, although personally I’d rather be running on the beach. Pearl’s best place is the bright swimming pool, Father of Pearl and I play tag team in and out of the steam room, sauna and jacuzzi. A modern lodge houses the Tranquility Spa offering beauty treatments from massage to pedicure and back again. It is in fact very heaven.

Talacre appears to have its own microclimate, it’s often sunny when further up the coast it’s raining. We’ve also found that if it’s raining here, Llandudno and Conwy are dry (usually-but remember holidaying in North Wales without waterproofs is just plain foolhardy).

The season is long (March-January) and we have just returned after the winter break. I can’t begin to describe the sigh of relief as we drove onto the park with nothing but a weekend of beach and play ahead of us. Admittedly the seagulls running across the top of the van in the night sound like they wear hobnail boots, but they are a small price to pay for the location and general ambience.

In short we love this place. It has become a proper escape from our messy, appointment filled lives. For some reason the permanent guilt I feel at not theraping Pearl through her every waking moment doesn’t follow us here. I’ll let her watch TV and play on the iPad to her hearts content, knowing that they’ll be enough active and outdoor activities to balance it out. Once every six weeks or so I escape by all by myself for a couple of nights, to walk, read, run and recalibrate. It is bliss.

I would go on, but small dog Herb is scratching at the door and I must go down to the sea again.

A boy, a beach, a sunset and Pokemon Go. Sorted.

If you would like to check out the facilities follow the link here or better still call and speak to Lori Jones, tell her Mother of Pearl, sent you and she’ll arrange a completely obligation free visit to see it all-and show you where the cake shop is!

This blog is a finalist in the BAPS awards (Father of Pearl has been asking friends to vote for his wife’s Baps), promoting blogs about additional needs and parenting. If you would like to vote for us the vote is open for one more week and you can do it here

Oh, The Places You’ll Go.

In which a change is as good as a rest.

Going on holiday with my gang of miscreants is not an easy task. A friend of mine with small children describes her holiday experiences as “same sh** different location”In an effort to avoid this we have tried a number of things.

Air travel is currently out.Father of Pearl is properly afraid of flying.Valium helps.
Pearl doesn’t do queuing and waiting, the idea of wrangling her and a 6′ 4” gibbering drugged up wreck through an airport and onto a plane is less than appealing. The Glory flies off to extraordinary places with Guiding.The Gambia and Copenhagen have both been on the list-I’m hoping if I stay on her good side we can go away together in the future.

Rab shows a typical, non typical, resistance to change.He can do holidays if he knows where we are going, how long the journey will take,what time we’ll leave, when we’ll arrive what his room will be like and a rough itinary of the break.He doesn’t like them and is usually desperate to get home.Both teens (and F o P) NEED wi fi.Obvs. I’m a dinosaur and just need lots of books.

We also require flat access, downstairs bedroom for Pearl if at all possible and a flat outside space.

This leaves us with the following options.

Stay at home. Forever. No surprises. No changes of routine, and the real possibility of infanticide.

Choose the same, or similar places. And this brings us to the reason for this blog,a short, non sponsored paen to the place that everyone in the family loves and a big thank you to those who work there.

We have just come back from Center Parcs. We love the place. It is not a cheap holiday alternative, but what it offers us is perfect for everyone.For reasons I cannot begin to explain(and nor can he) Rab loves it.It’s familiar, the villas are the same. We did, it’s true, have a slight wobble, when he realised this time our villa was “the wrong way round”but as he’s 16 and was aware it was the autism speaking he bravely overcame having the living area the wrong side of the kitchen.

In the car on the way to Sherwood Forest the 18 and 16 year olds regressed to being about 10,hitting each other shrieking and laughing, they say this was to amuse Pearl, (it did) but it’s actually the effect of going to Center Parcs that causes it.

If you have never experienced this place I’ll explain. It is a large,managaged forest.There is a variety of accommodation, close together, but orientated so that you have clear views of your surroundings and aren’t at all overlooked.There is an amazing huge swimming pool, sorry, “Sub tropical Swimming Paradise”, with flumes, wave machines shallow pools, this is all included in your stay. There are a massive amount of bookable activities that you pay extra for and can take or leave at your leisure. In the past we have done aerial wires, roller blading,flown hawks, watched owls, a nature walk, scuba dived, Bollywood danced, tried archery,hired bikes and played badminton.

Years ago on a previous stay,The Glory learnt to ride without stabilisers there for the first time. That’s the other thing, when you have unpacked your car, all cars return to the car park and the site is vehicle free.It is possible to be mown down by a middle aged person unused to cycling, but on the whole it’s safe and easy to navigate,and fairly flat so Pearl can walk a bit.

This last weekend came with an ensuite swan.On opening the blinds in the morning he knocked incessantly on the window in the hope of food.I’d like to say that the teens didn’t give him my cereal, but I’m not entirely sure.This,and the gaggle of geese who appeared plus the squirrels, rabbits and moorhens made me feel like Snow White without the dwarves.Pearl was utterly enchanted and ready to feed them Doritos (she doesn’t like them) but was restrained.

All human life can be seen at the pool, all ages, sizes,races and abilities.This makes holidaying with someone small and special easier, as you are absolutely not the only one.There are decent changing facilities with benches, and when the small person with you resists getting out of the pool and changing ,while screaming blue murder, you are sympathised with, and nobody calls Social Services, which is a bonus.

16996122_10155102975247915_7258471289518553828_n — “If I just climb into the wheelchair maybe they’ll take the hint and take me swimming?”

The staff really seem to enjoy their jobs, and most waiting on staff gamely took Pearl’s orders made with the help of her PODD book and came when she looked over her shoulder and shouted “haro”while jabbing at the food and drink page.

There are a handful of fully accessible villas, with wet rooms and hoists.We don’t presently need this, and knowing all the other villas were one storey, did book a villa two stays ago, only to find it was up a steep flight of steps.Within 20 minutes we’d been reallocated something more appropriate.The moral is, an organised parent phones to book and mentions needs rather than doing it online. (I’m sure you all would have done that anyway).

This stay Pearl managed more in the way of walking and of climbing on soft play. We also allowed her an ill advised go on a steep slide in the pool-I went down to the landing area to fish her out, only to realise there were almost vertical steps to get out of the water. We did it once more (she loved the slide) before finally admitting defeat.

However the best thing by far was the World of Spa. Having taken advantage of the fact that Pearl was shattered by all the activity and can’t tell the time, we put her to bed at 5.30 (yes we did pay for it with an early morning) left the 18 year old in charge and floated, bubbled, steamed and relaxed our way around the spa for two and a half hours.It was awesome and I was so relaxed I went to bed as soon as we got back at 9.Which was just as well when Pearl woke up full of beans at 3.Maybe she can tell the time after all?

So Center Parcs,I know you are a large organisation, and our family are only a tiny handful of your yearly visitors, but a HUGE thank you from us for being, inclusive, fun, friendly and good at what you do.

Have you and your family enjoyed and inclusive accessible holiday with great service? We’d love to hear about it in the comments.

*STOP PRESS* We have been nominated for an award! The BAPs awards is a new award for bloggers writing about additional needs parenting.The Wrong Kind of Snow is a finalist in the Promoting Positive Perceptions category.You can vote here, and do take a look at all the other awesome finalists too! Thank you.

A Hymn to Him

An unapologetic love letter to my Dad.

I don’t know why you have been on my mind so much lately, it’s twelve and a half years since you died. Perhaps it is watching your small wobbly granddaughter achieving her small significant steps, and hurting that you never met her or knew of our struggles.This morning I saw a bright, quick, robin with worm in beak.I stopped and we made eye contact.I smiled quietly. Somewhere I heard an old story that robins were spirits of loved ones popping back to check up on us. Oh I think this is nonsense, but just like children want to believe in Father Christmas I want to believe in this.

A huge rush of memories was undammed by this bright eyed creature, smells, sounds, questions unanswered.So many stories trail behind all of us and you were quite secretive about yours.

In white working class Essex, I did not know anyone else whose Dad had been brought up in India, with servants and in what looked like a stately home.Your Great Grandmother was half Goan.With Anglo Indian heritage in what was then Bombay your family did not really fit. Too English to be Indian, and too Indian to be English. How was it for you I wonder? I know you had an Ayah, and that she was too young for the job and gave you Opium to keep you quiet.I’m told this affected your lung development and led to the chronic problems with breathing you suffered from throughout your life.I know you loved your Cook and spoke Hindi to him because you told me suddenly in a rush of memories as we were washing up one day. He cried when you left for England. I expect you did too. You told too about the riots during Independence, and the servants coming to find you in a shop and hiding you in the back until the trouble had passed. This memory when voiced was so precious, so rarely heard that I did not push you for more information and now it is too late.

The Hounslow girl who you met at a dance and later married, tells me that your mother was ill prepared for life in a London semi, terribly untidy and that your untidiness was due to servants picking up after you. Who would have thought that a Council House girl and a diffident chap from Bombay would have so much in common? She thought you looked like Clark Gable, she reminded you of Ingrid Bergman.I’m so glad you met, and that the Doctor who told Mum that with your chronic emphysema you wouldn’t make 40 was wrong.I have a particular interest in that part of the story as I was the “autumn blessing”when you’d already got well past the babyhood of the one of each who were already there.

I know I get my work ethic, drive and ambition from you.You also passed on a strong faith in God and politics. People found you gruff, and plain speaking to the point of offence at times. Your views were very black and white, there really was no grey. As I hit my teens this was the cause of huge arguments, theological and political. You had been in and out of hospital and had near misses so many times that I was always concerned that I would be the one to trigger, through stress, the final asthma attack. I think we both knew you were too stubborn for that.

Your best beloved told me not to come home if you died while I was away doing my degree, she would manage just fine, but no you carried right on on your one functioning lung, moved to a new area, made new friends created a new and beautiful garden, gave me away on my wedding day. I remember (I seem to have something in my eye as I type) the speech.You couldn’t believe in arranged marriage you said, as you could never have chosen anyone as perfect for your beloved daughter.(You were right)

You haven’t seen them growing up, my children, the eldest receiving university offers. You stood up and cheered at the Free Trade Hall in Manchester as I walked across the stage to receive my degree, the first in our family to do so. When I think of you I am still trying to make you proud, but I know you were proud of us all, Big Girl , My Son and Girlie .No one calls me Girlie now.

You would have been proud and worried about my boy, who has struggled with depression and life. When he was diagnosed with Aspergers I was adamant. “He’s not on the spectrum he is just like his Grandad” Oh Dad I think he really is and that you would have been a prime candidate for late diagnosis.

As for the Pearlie Girlie, no one could fail to love her, I’m so sorry you didn’t get to meet.

Dad you would have been particularly proud of mum. She cared for you so beautifully at the end, after a lifetime of caring. She was determined to keep you at home with the hospital bed in the living room and very little extra help. Driving that road and not knowing whether you would be there when I arrived, in and out of hospital again, but you stubbornly clung onto life. I will never forget the phone call “the terrible day has come” and there you were looking so young and peaceful in the living room while we just had a cup of tea.

She has gone on that girl of yours to carve out a life in her community, move house to be nearer us, and start all over again. I see her getting on, but missing you.She still says “we think” as if you have discussed it. I suspect you probably have.

More than anything, the thing that hits me right here is a cuddle from your best beloved and the phrase “your Dad would be so proud of you all”

Exchange

When I was at school it was common to have a few foreign exchange students join us for a week or two. They seemed so exotic. Their clothes were brighter, speech eccentric, even their mannerisms seemed strange and new.

I was never lucky enough to host one of these fascinating creatures, but recently have been enjoying a cultural exchange of my own.

Imagine being air-dropped in a foreign country. Totally fluent, you just fall out of the sky one day. You’re articulate, the locals treat you as one of their own. They assume you understand everything, not just the language but also cultural jokes and idioms. Facial expressions seem strange and don’t always equate to those you saw back home. Gestures you knew to mean particular things make little sense.

The initially friendly residents of this new state become short tempered with you, assuming you are ignoring them, or being rude and difficult. As well as this, all colours seem much brighter, and the volume of everything has been turned up to the very edge of bearable. Textures seem more pronounced, clothes rougher, trees pricklier and worst of all – smells are much smellier.

This is the closest I can come to imagining the world my bright, witty 15-year-old son with Asperger syndrome inhabits. I can tell you now that if I was living with that every day I would be crankier, more tired and have meltdowns on a regular basis. Wouldn’t anyone?

The family he was airdropped into was noisy, opinionated and busy. Oh, and blessed with a permanently sarcastic mother.

I had limited experience with classic autism through my work as a speech therapist – so never suspected my son could be on the spectrum. He was caring, cuddly and very verbal, fond of long complex words; this was not what autism looked like. Being busy with two other children, one of whom had significant special needs, I was quite short-tempered. This boy who didn’t listen properly, willfully misunderstood obvious situations and took everything literally.

I’m known for being perceptive, caring and empathetic (modest too!). In moments of glorious parenting these graces were not extended to the boy.

I could not believe he could not follow simple commands. ‘Your ears are big enough, use them.’ He used multisyllabic words in conversation, but would then ask for explanations of simpler words. ‘Of course you understand it,’ said the ever-loving mother. As for the ‘tantrums’ we thought he was putting them on.

The day I saw him practicing facial expressions, I began to wonder. My guide into this new country was Tony Atwood. As I read The Complete Guide to Asperger’s Syndrome the scales fell from my eyes (metaphorically speaking). It became my anthropological guide. Chapter after chapter, another apology to my poor boy.

Attempting to understand his autism has included unpicking everything I perceived and understood to be normal. Things I assumed were right are just cultural or societal, not inherently correct.

I’ll give you an example. Someone recently told me that a member of their church was autistic and non-verbal. The church was very accepting of him even though ‘he always wears a hat, won’t take it off – and of course you can’t wear hats in church.’

I nearly choked on my tea. Who or what decided that wearing a hat in church was wrong? GOD?! This, my friends, is a cultural, not ‘normal’ expectation.

Presumably, our culture has this ‘normal’ expectation too, which allows us to happily go about our lives feeling comfortable and reassured. Now, like it or not, my son is going to have to learn some of these rules to ease his way into society, but actually as a society perhaps it’s us that need to make some adjustments of our own.

Look at our own culture. We live on a small island with a rich literary history. Fond of quotes and metaphors, big on small talk and oblique passive aggressive hints. How would anybody on cultural exchange be expected to know that the correct answer to, ‘does anybody want this last potato?’ will always be ‘no’? Why would anybody peel their eyes and if they did, how would that help them to see better? If somebody looks affronted but says they are ’just fine’, why are they angry if you switch topics?

The English place a high value on social conformity, and are just waiting to be embarrassed, hard if you are wearing the wrong clothes, tapping, flapping or smelling the items in shops.

The boy was reluctant to wear coats. I have taken ages to get my head around this. I am a chilly mortal, and have worn gloves in June before now. He, however, is not me. Also, he has sensory processing disorder. I was astonished to learn that this is really common in autism spectrum disorder (ASD). So, perhaps I needed to look at the fact that he would happily wear a hoodie. A hoodie is, after all, a coat by another name.

Wasn’t he grateful when I bought him two pairs of new jeans as he’d asked? ‘One just the same and one a different colour and cut, just to make a change,’ I assured him. ‘The horror in his eyes as I realised – rookie mistake on my part – that for many people with ASD, a change will NEVER be as good as a rest.

So, as I prepare my boy for transitioning into the wider world, where going shoeless and wearing a 4-year-old hoodie, which only reaches his elbows is frowned on, he also shows me that so many things I thought were important, are really just part of my culture. It is, indeed, possible to wear a duvet outside to keep you warm. Do this in public and the locals will stare at you. Is the staring more uncomfortable than wearing an extra layer? That’s your choice.

I’ve learnt to hold clothes to my cheek before buying, and laugh at idioms. We journey through together, picking through social etiquette, deciphering the most important rules to save, to keep the peace, while trying to keep it real.

First published on My Family our Needs as “Unpicking Everything That’s Normal”

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