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Sleep, sweet sleep

 

Arthur is the master of sleep in our family. When he sleeps, his eyes are glued shut. He snores, he is heavy, and no vacuum cleaner or stomping about can rouse him. He is a professional. In the winter, he eats a big breakfast (a cat who is very much led by his stomach), he goes out, comes back, runs upstairs and settles on my bed or the sofa or the kids’ bed, basically anywhere he thinks he will be undisturbed. And there he lies, often until about 9pm when he thunders downstairs, sits in the living room looking groggy and a bit confused. He is greeted by a sarcastic but good-humoured ‘Good morning Arthur!’, fed and let outside. He returns and spends the night on my bed.

So one day ends, and the pattern is repeated the next.

I wish I could sleep as much! I used to be such a sleeper, relishing lie-ins at the weekend. In school holidays I was allowed a few days of sleeping as much as I needed, bliss.

Even in my adult days, my mum would never dare to phone me early at the weekends!

I have not become insomniac, far from it. I could sleep on top of a flagpole if necessary.

The Children are to blame of course! Both boys were light sleepers, easily woken by anything as babies. Its not an uncommon story of course, being ready to phone people at 8am for a chat, only to realise that maybe others have not been up since 5 watching Alphablocks and Mr Tumble when it is pitch black outside and may not welcome my call at that hour! Well, you do get to see some spectacular sunrises I suppose. I could never get used to it though. SonTwo is still a lark, an early riser, though it is 6am now rather than 5. He is fresh as a daisy and ready to chat, not quite realising that his mother is barely functioning. I can just about walk, rather than slide, downstairs. Coffee, toast, tv, another sunrise. Time to spend with just the two of us. My warm and cuddly little boy, he smells of sleep and of himself. I will never forget that scent.

SonOne also wakes early, though it is a matter of argument and debate every morning about who woke whom, at what time, and why he chose to ignore the clear request ‘Whatever time you wake up, DO NOT WAKE YOUR BROTHER’. Sharing a room really must end soon.

SonOne is a lot like me. Definitely owls, he and I are. He takes forever to warm up to the day too. In my case it takes coffee, toast, breakfast tv or something unchallenging on catchup. Only after all this can I consider to get ready for the day. SonOne comes downstairs in varying degrees of stress and grumpiness and unwillingness to join the day. Sometimes my effort at a cheery ‘Morning, darling boy!’ is met with a growl and a ‘You just ruined my day’. Ah well, turn the other cheek, he didn’t mean it, surely. He puts headphones on, cuddles under his yellow, supersoft blanket and eventually manages to poke his hand out and grab some toast to eat in his yellow cocoon. Slowly, slowly, toasted bagel and time work their magic.

Sweet, sweet sleep. Restorative and essential. No wonder Arthur is so handsome: beauty sleep is top of his priorities. I really should take a leaf out of his book.

 

Nothing stays the same for long

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Since SonOne’s diagnosis, I have read so much on autism, researched so much, listened to talks (live and recorded), been to support groups, sometimes till my brain ached and I could no longer distinguish which information was useful or might be useful in the future. Then after a year or so, autism fatigue set in big time. I couldn’t bear to see, hear or think about autism. My brain was full.

Every lecture, every book or article, every support group yielded at least one ‘take-home’ bit of information. One speaker very enthusiastically pointed out that all people change and develop over their lifetime. Ask yourself what you were like as a five-, six-, seven-year-old? I bet you have changed many times in your journey into adulthood.

Change is constantly happening, within the child, in the adults supporting him or her, and (we hope!) in society too.

Another very eloquent speaker outlined the journey her child has taken to date, and the nugget of wisdom I still remember clearly is that yes indeed her child has progressed, matured, developed, but that that change was not down to luck. She emphasised that that progress came about because she read and researched, taught and guided her child over and over again as the years went by. Of course the guidance has not stopped, nor will it probably ever stop.

We hope we can teach and guide our children so that they grow up into good adults with a useful contribution to make to our society. With a neurodiverse child this guidance and teaching does not come from just one source, and is definitely a ‘work in progress’. We must maintain a good rapport with the adults around our child. The best school experience we can hope for is to encounter teachers who listen to us as parents, who are open-minded, and who see beyond test results or attendance records to the person and his or her individuality and uniqueness.

 

How high are you functioning?

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Do you know any autistic people? What are they like?

This is of course a trick question. Try to answer the question ‘What is a non-autistic person like?’ and you will see the problem. How can anyone possibly generalise about so many people in a simplistic way? And yet, this is what happens all the time.

People say ‘If he’s at mainstream school, he can’t be very autistic’, or ‘He is performing/running/acting/swimming, he must be high-functioning, that’s not too bad’, or ‘At least he is verbal’.

To make this out to be some sort of a disability competition is patronising to the individual and undermines their struggles and experiences. It is not a competition to see who is ‘more autistic’ than someone else. The autistic spectrum is correctly termed a spectrum, in that it covers a massive range of abilities, presentations and experiences.

The saying goes ‘If you have met one autistic person, you have met one autistic person’.

If a child or young person attends mainstream school and is not significantly behind in academic work, then technically he may be termed ‘high-functioning’. No-one would expect a non-autistic person to be good at baking and swimming and maths and piano just because they are non-autistic. Similarly, an autistic person may get through the school day having enjoyed maths and ICT (subjects of special interest), but not coped with music (too loud) or PE (too chaotic) or lunch (smelly and busy), and there is always, always a price to be paid at the end of the school day for having coped with six or more hours in a stressful environment.

Many autistic children are very good at masking, ie picking up behaviours from those around them, to appear to fit in better than is actually the case. Their face may look calm or impassive, but inside there is a tsunami of feeling going on. These children spend so much effort in trying to fit in and not stand out or commit some sort of social faux pas all day that, once home, the parent or younger sibling tends to bear the brunt of the day’s stress. The release of tension comes usually sharp and loud, can be physical or verbal, and although obviously hurtful to the family it is directed at, is usually not deliberately intended to hurt. Home is the safe place where emotions don’t have to be smothered.

The analogy often used to illustrate this is that of a fizzy bottle, being shaken up ever so slightly every time something causes stress, so that by the end of the day, there is no other option than for the bottle to reach capacity and explode.

T-time

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It’s T-time again.
No, not time for a cuppa.

T is for Transition. For an autistic child, transition happens so often and is so painful. Experience is forgotten as sheer terror grips him, and all those past events which were successfully negotiated now count for nothing.

Transition can be on Saturday morning, a change of routine from the weekdays.

Transition can be on Sunday evening, the dreaded return to school.

Transition can happen on the eve of a holiday, or on the eve of the return trip.

Transition is bad enough at the end of the school year, and as if things couldn’t get more stressful, transition is at its worst in the lead up to the new school year. So many unknowns. You just can’t prepare for every eventuality.

In January, we have the transition from holidays into spring term. People will be asking ‘How was Christmas?’, ‘How was your birthday?’, ‘Ready and raring to go?’ and saying ‘You’ve grown, young man’, and ‘Nice to see you again’. All these things are usually said in passing, not really requiring an actual answer. So, why ask them, an autistic person may be justified in asking? Welcome to social conventions. It is a minefield. Most of us pick up the rules by observation and practise as we grow up, we adapt to expectations fairly easily, we learn to fit in with our ‘correct’ and quick responses. It doesn’t come as easily to everyone though.

It is usually only when we try to learn a new language that we realise how complicated our own one is. And so it is watching an autistic child try to learn responses, recall them fast enough, remember to smile or use a correct facial expression depending on the situation. If you sat down to draw some sort of fancy diagram of all the phrases which might crop up in a simple conversation exchange, you would be hard-pressed to make it clear. The problem is of course that the other person isn’t reciting from a script, so you can very well learn a whole range of suitable responses, but none of them may be quite apt in that moment in the real world.

So, tomorrow I will put out the bags and sports kits after he is in bed, I will not mention school all day.

Tomorrow he will be buried in his iPad with headphones on. He will eat popcorn and toast and not be challenged in any way.

This way he will (I hope) preserve some energy for the ordeal which is the morning of the first day back at school.

 

Therapy Cat

When I last took our cat for his vaccinations, I told the vet how sweet the cat is to my autistic son. The vet looked surprised, and said it was so nice to hear of cats being intuitive, rather than just hearing about dogs responding to their humans’ emotional needs.

This surprised me. I would imagine that children or adults who are easily overwhelmed by sensory stimulation would find dogs, lolloping around, mouth open, barking, being constantly overjoyed at the world, too much.

Our little cat was 3 months or so when we brought him home from Blue Cross, and it was an instant bond. Since the start, our Piccolo comes running when SonOne is upset or having a meltdown or in any way not on an even keel. He comes running to greet us when we arrive home after school, and he represents Home, an anchor, a familiar and safe place to come back to. When we come back from holidays or a day out, Piccolo is what needs to be found straightaway.

He is soft and moves quietly, he miaows occasionally and often this is in response to my son speaking to him. He joins us on the sofa, in his own spot. When he has been  lying in my son’s bed, my son warms his feet in the little area which is still warm. Sometimes he wants to play, sometimes he wants a hug. He often remembers his kittenish habit of lying on my shoulders, even though he is now a bit too big and heavy for my neck to bear.

He takes from us love and attention in gentle but regular doses, but he gives love back in bucketloads.

Long may little Piccolo be here for my son.

 

my blogging debut

Guest Story by Livia Vass

‘Diagnosis Day brought with it a whole range of emotions. Relief, that an expert confirmed what I had known for some time. Shock, that she had said it was ‘obvious’, when for years teachers had said there was nothing to point to this conclusion at school. Exhaustion, physical and mental. Dilemma, of how to explain it to Son One in a positive way, when it was all so new and confusing, however much it was not a surprise.

But, life goes on. After diagnosis came the euphoria that now, of course, we will receive support and things will be better. Disappointment quickly followed when it became clear that any support would have to be fought for, and would largely come from the kindness and empathy of individuals at school, rather than from any clear structure of support following a diagnosis.

Joining local support groups was a lifesaver. I have met so many wonderful women on these courses and meetings, who have become true friends. I would like to think they would have become friends if we had met any other way, but having a shared experience gives a shortcut to getting to know each other faster. As an autism parent, you learn to cut to the chase. You learn to trust your instincts. There isn’t time for pussyfooting about!

Then you settle into some sort of normality, having an autistic child in mainstream school. Everything depends on the personality of the teacher and support staff. When these people are positive, all is well for a school year. When they are disinterested or downright mean, the year is a write-off and causes so much damage to an already anxious child struggling to fit in.

Usually, you don’t have to look too far in the family to recognise who the autistic traits were handed down from. Sometimes the link is a bit further removed (uncles or aunts), but usually they are to be found much, much closer. The more you learn about autism in general and autism as it presents in your own child or young person in particular, the more you start to see it everywhere. It is as though diagnosis comes with a bonus present of a special superpower which enables you to recognise autism in those around. The teacher who is abrupt and has no social skills, the colleague who finds eye-contact painful, the overly-brusque mum at school who just doesn’t know when or how to bow down gracefully, the relative who takes himself off to another room or the toilet or outside when family gatherings become too much, the friend who is loyal to a fault but hates that hello hug.

And once you see it all around, you marvel with almost evangelical zeal at how many autistic people there are around. Usually undiagnosed, of course. About a year after my child’s diagnosis, I realised that I know more families which include one or more autistic child, than I know families with neurotypical children. When things weigh me down, I sit and wonder what on earth parents of neurotypical children worry about for their kids. What do they think about all day? They surely are not occupied with photocopying reports and documents, setting up meetings with school, trying to use the school hours to re-energise enough to face the inevitable meltdown at home time?

We have been through a rollercoaster of experiences as we got to know our son better. At the age of 11, I know that the worst is yet to come as he is forced to take the next step towards the wider world, a step he is not ready for. I now know that the unofficial support offered by friends in the know is incredibly valuable, and I also know that I will be leaning heavily on those whose children are a few steps ahead of my child in the perilous experience of growing up autistic.

What about all the adult undiagnosed autistic people I seem to have met? Mostly, I notice that they have chosen a partner who complements them somehow, are usually a much more worldly or sociable personality, someone who is generous enough to understand, tolerate and appreciate them.

This is what I wish for my son, someday.’

Livia Vass

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Livia Vass is a typesetter and mum to two lively boys (one on the spectrum) and two sweet cats. Her son was diagnosed age 9, so they are further along on the autism journey. 

Welcome!

New Year, new resolutions.

But really, we can decide to throw out the old and bring in something new any day. Every day can represent a fresh start. So we like to believe, anyway.

I have been meaning to write for a long time, and after the opportunity of a guest piece on a friend’s blog presented itself, I took the plunge!