I guess the Bank Holiday today means different things to different people: for our (noisy) next door neighbours it’s barbecue time, with children jumping and shrieking on their trampoline, shouting at anything and everything; for others, it’s a trip to a DIY store for bits and pieces and for some, it’s a road trip to the beach.
For us, it’s “business as usual”, routines, anxieties and calming mechanisms. We did go out visiting and stopped off for a costa-to-go on the way back, there was a religious ceremony at the village centre which was heavily populated and the coffee shop itself was absolutely heaving. We weren’t going to stop in there anyway but the noticeable cringing of both T and D made it definite that we wouldn’t.
All very glad to be home and the rest of the day has been thankfully calm (at least on our side of the fence).
One tool that both T and D find very useful from both a calming and an educational point of view is their iPads. D in particular will happily sit in her buggy, tap-tap-tapping away, oblivious to the hustle and bustle around her. I blogged about this here.
Hearts and Minds (on twitter @handmchallenge) operate a wonderful scheme where the collection of mobile phones can be exchanged for an ipad, providing a much-needed communication, calming and educational tool to children with autism.
Cheryl has written tonight’s This Is Autism post about her son, Bobby and how Hearts and Minds have helped and continue to do so.
“Living with autism is difficult to describe. I often see reality show contestants talk say all the usual clichés – it’s been a rollercoaster, I have been on a journey, I found myself. I find all those clichés actually mean something to me and my family. Every day brings its own struggles and rewards.
7 years ago I gave birth to a beautiful baby boy with blond curls and blue eyes. He looked perfect in every way, passed all his health tests and all was good. But from the moment he was born he was different. Here was this gorgeous child who wouldn’t sleep and wanted to be fed constantly. After spending three weeks in hospital suffering from exhaustion I felt as though I was a bad mother who didn’t know what she was doing, I just couldn’t get it right. I blamed myself for his sleep and feed issues. When I asked the doctors and the nurses I would be fobbed off. So off home I toddled with new born in tow ready to face whatever came my way.
Still 6 months later, my boy still wasn’t sleeping and wanted to be fed constantly, probably getting a maximum of 3 hours sleep on a good night, he still had made no effort to try and roll onto his belly or to crawl. That’s when the questions in my head started to magnify. I put it down to lack of sleep and overthinking. When the health visitor appeared I would ask why my child is so different, why wasn’t I coping, why couldn’t I get him to sleep? Once again blaming myself as from the way the health visitor looked and spoke
to me it obviously was.
The lack of sleep was starting to take a toll on my relationship with my partner and my other two children. They couldn’t understand what was up with me or Bobby. As Bobby got older still his developmental milestones were not forthcoming. He was one and still was not crawling.
It took 6 months to convince my GP that I needed to see a paediatrician. It was such a relief when finally meeting her and I was able to voice my concerns while she observed my son lining up bricks in an orderly fashion. I told her my concerns were Autism and she told me my concerns were valid.
That was the moment it was confirmed for me that all the thoughts going through my head were right.
Even though I had it confirmed I still then had to go through nearly two years of tests to get an official diagnosis of Classic Autism and I was one of the lucky ones. At the age of three he had an early diagnosis even though he could have had it confirmed so much earlier and then strategies could have been put in place to help him develop.
Today Bobby is 7 years of age, he still has no understandable language, he still smears his faeces across my walls, and he still has meltdowns in supermarkets. It is the judgemental looks of other shoppers that can really ruin my day or the snide comments about his bad behaviour. I have to calmly inform people of his autism and many people think it’s an excuse. They can’t understand that the sound of the freezers might hurt his ears or the lights might be too bright or simply that it is all too much of a sensory overload.
Bobby can spend hours trying to rip his skin of himself as it hurts him, biting into his hand so hard he will probably have permanent scarring. He can often try to hurt others and will feel no empathy for the other person no matter how hard they cry.
Saying all that, Bobby can be the most loving, joyful child to have around.
With services being cut back and help depleting once you have the diagnosis I needed to turn to someone. I needed to pick my battles. I decided to go for speech. That’s when I approached hearts and minds and looked into their iPad scheme. I managed to collect 165 phones within 6 weeks and received an iPad within a couple of weeks.
When I first received Bobby’s iPad I was sceptical to it working. After much practice Bobby was finally able to communicate with his family and the outside world. He could tell me when he wanted his dinner or how he felt. The iPad never leaves his side now.
With Bobby being able to communicate, it changed the whole dynamics of my family. The violent episodes are getting less, he has stopped harming his big sister and the home is generally calmer. I picked my battle very carefully and won thanks to hearts and minds. I have my family back and we work as a unit once again.
Bobby is more willing to go on day trips with us as he can tell us if he feels anxious or scared, or if it is simply too much for him. Hearts and minds are always on the other end of the phone if I have a problem or some advice. If I need help with his school, therapists, or benefits then I can access their advocacy service any time. This is invaluable to me as there is always a problem.
Thanks to hearts and minds I have my life back and feel that I am not going through this on my own. Living with autism would be so difficult without them.
As for Bobby we take each day as it comes, facing each challenge head on but now we are positive and our lives wouldn’t be the same without him. He is centre for my family and I feel proud of him every single day as he makes a small step in his achievements and all that he has to overcome.
Autism isn’t a journey that I planned but I sure do love the tour guide.”
(I love the last sentence of Cheryl’s post, I have a similar phrase on a little wooden sign by our front door, picture above).
Nearly the end of the week and it’s been a (on the whole) good one.
I saw these in Next yesterday and I’ve yet to find a bit of wall space for them but they sum up our week perfectly:
And here’s why:
1. After initially crying (lots) because she said she’d miss school, D has been a happy, smiley, bundle of cuddles! Any anxieties have been dealt with immediately because she’s been able to tell me as opposed to bottling it up for a few hours until the end of the school day.
2. Similarly with T, he’s been more relaxed and there have been a few of his little shy smiles.
3. The pool has been out and that has prompted smiles, splashes and laughter. The law of sod has done its bit with cooler weather but it’s clean, full and there for better weather.
4. I was a bit worried about my father-in-law and his coping this week with it being firstly his birthday and then it would have been Hubbie’s mum’s. The first for both since she died. We took him in lunch and his present was a canvas frame of the two of them (bought, not a freebie). It made him smile.
5. Weather permitting, we’re having an Easter egg hunt in the garden on Sunday. Because T can get very competitive, I’ve got pink and blue eggs (yep, stereotyping) and they’ll both have separate maps, just makes things easier and ensures smiles with added chocolate!!
6. I had a happy clothes moment this week and not a sausage in sight (Wobbles Wednesday), that made me smile.
Have a lovely long weekend
A peaceful day today has followed a busy and emotion-filled one yesterday, just what was needed for T and D. I aim to separate out busy ones with a what-some-might-consider boring so as not to build up the over-stimulation and anxieties.
There have been plenty of smiles and cuddles from D, plenty of concentration on his stats and football facts from T, both have different ways of relaxing and calming.
Considering all the uncertainty around where T will be going to secondary school (we’re appealing a place refusal at our first choice), the fact that his football season ends on Saturday and that his intellectual and emotional capabilities are far higher than D’s (which I sense frustrates him, that she’s not at his level) and he’s not doing too badly.
This Is Autism
It’s nearly a year since we received T’s diagnosis of high functioning autism and tonight’s guest post by @lauren_holmes12 aka bloggermummylauren.co.uk is one I can definitely identity with.
The uncertainty, the parental guilt felt from delaying seeking initial assistance, the knowledge that a “label” could potentially change how your child is viewed and the knowledge that until this “label” is received, very little support will be available. And of course, the waiting, the constant requirement to chase up appointments with (very) over-stretched departments, it all takes time and can be emotionally draining.
Over to Lauren and “Waiting“:
“I’m Lauren, Mummy to Neil who is 5, and Caitlin who is 4. We are currently in the middle of a long process of diagnosis for Neil. While he may not have received an official diagnosis of anything, we are expecting, and have been pretty much told by health professionals that we meet, that he will receive a diagnosis of high functioning Autism/ Aspergers.
Being our first child, I think we missed a lot of the early signs because we didn’t know what was and wasn’t considered normal. He was always just our perfect little man. We started to notice differences when his sister started growing up alongside him, and did things differently, or hit milestones before him despite being a year younger. Still, I never gave a second thought to Autism.
All I knew, or thought I knew, of Autism was what I’d seen on tv, Rain Man or someone non-verbal, and my son was nothing like this. I had no idea that there was so much more to Autism, that there were different forms, that it was a spectrum. It was only when I started to Google things that this whole new world began to open up and the overwhelming process of trying to digest the information that is out there on this subject.
The first bridge I think mentally I had to cross was essentially for a lack of a better way to describe it believing that there could possibly be something wrong with my son. Being honest this was probably the hardest thing to do so far in the process. I wondered was it me imaging things, will I be putting him through unnecessary appointments and testing etc. will the doctor think I am mad, am I being mad, I went through a million scenarios in my head before I finally phoned the doctors to make an appointment to see my GP.
Once I went to the appointment, the GP literally looked at Neil, spoke to him briefly and referred us on. The appointment then came through about 6 months later and that was pretty much the same, spoke to Neil for a bit, asked him to do a few exercises in story telling, play, etc. then we were referred on again, and 4 months later another appointment. This one was just an appointment to make you think you weren’t waiting to long for the real appointment if I am honest. They asked very general questions about him and give us couple of questionnaires and “see you at the real appointment in another 4 months as we are backed up but can spare an hour to do this nonsense with you”. (Felt like this should of been the first appointment as it referred us back to the same people who had referred us on after the first hospital based appointment). I am not annoyed at the length of time the process takes or anything but the appointment with just parents felt a little like “the questionnaires in the post, you will get a date soon” would of done the same job and saved us travel costs and babysitter.
Which leads me to the present day and waiting for the appointment where we will get a diagnosis, fingers crossed. This limbo stage so to speak is somewhat of a difficult period as there is not really much support from local health services without being able to produce a formal diagnosis. I have tried to essentially learn as much as I can from books from the local library, the internet, blogs and autism groups and take what I can and put it into action within my son’s day to day life and within the home to try and make life as easy for him as it can be.
Its also one of the reasons I got into blogging as I had found quite a bit of helpful advice, tips and even comfort from reading other peoples stories on blogs that I thought I would try and do the same. I try to add ways to do some of the things I have seen on websites that are to help autistic children that to be honest are often out of my price range at a budget price at home, which can have the added benefit of being tailored to the childs interest’s so has a double benefit in that sense. I also hope my blog is an honest account on our journey through ASD, and general family life, and hopefully people in my position can relate, and take comfort in knowing they are not alone, or even just laugh at our silly family stories”.
I hope you all don’t have to wait too much longer, Lauren, thanks for writing for #ThisIsAutism.
Firstly, apologies that Wobbles Wednesday is appearing on a Thursday, the school holidays and real life are keeping me very busy, busy is good though!
I was all set to get this up earlier and then the wifi went, such is life. Two (long) phone calls later with so-called customer support and we’re no further progressed.
Yesterday was a good day, we were out and about and I did something I haven’t done for years, I wore a pair of jeans!
I always think I look like a bit of a sausage in them, Cumberland ring as opposed to chipolata but I put them on and they looked okay. Better than okay, better than last time I wore them (definite sausage time then).
Not the greatest picture and the differing circles make one leg took bigger but there’s the proof! I am not confident enough for selfies (stops duck pout immediately!).
We’ve still had plenty of birthday cake around (3 in 10 days) and I’ve been doing the moderation thang, ie if I’m going to have (another) piece of cake, then dinner will be minimal.
Something worked because that pesky lb I put on a couple of weeks ago has gone.
So, aims for the next week are:
Enjoy Easter, yes, there will be chocolate but a little bit is okay.
Don’t necessarily go by the scales, my jeans are proof of that.
Appreciate next Wednesday (and a peaceful coffee) when the children are back at school.
How’s everyone’s week going? Please link up below with your posts and I’ll read, comment and share. Anyone new is very welcome to join in too.
Have a fantastic long weekend x
Today has been a day in which both T and D have done Hubbie and I proud. It’s been a day spent with Hubbie’s dad, a day which he (FIL) wasn’t looking forward to as it was the birthday of his late wife, Hubbie’s mum. The first birthday without her. His birthday had been the week before, another first. A poignant start to April.
I had gently impressed on T and D the fact that grandad might get upset but we were going there to cheer him up and – hopefully – make him smile.
And we did. T and D behaved really really well.
Unfortunately once we’d left, T became extremely agitated. D had said as we were leaving “I don’t want to go” and T interpreted that to mean that she hadn’t wanted to visit in the first place, when she meant that she hadn’t wanted to leave. There followed a tirade from T about showing some respect. Picture the scene…a furious T, an upset D and a referee (me). However much I tried to explain to T what D had meant, he wouldn’t accept it and there followed an absolutely stony silence.
I guess that T had built up a few emotions during our visit, he (I guess) hadn’t wanted to leave either and he definitely, definitely did not want to admit that his assumption had been incorrect.
This aspect of T’s character really concerns me with the onset of secondary school in September. His refusal to accept and negotiate is part of what drives him, what makes him so good at his school work and sport but there will be far, far more pupils around, some of whom might not take kindly to a T-tirade. One of the reasons we’re appealing his school place to (fingers crossed) obtain a place at our first choice, a smaller school with a good community spirit.
Fortunately for D, T has headed off with Hubbie to a men’s team football match tonight, a chance for him to watch the game and get some ball play in too, one of his calming mechanisms.
Still, I’m very pleased that they both made their grandad smile and kept emotions under control whilst we were with him.
This Is Autism
Tonight’s guest post is from Anya who is @autiepower on twitter. It’s a great post detailing how she felt before her diagnosis and just how far she’s come since.
” “I think she is spending too much time with adults”. That was my pre-school teacher’s theory as to why I was struggling socially. I refused to play with the other children during break times. I didn’t understand the concept of ‘playing’ and had very little interest in it. The other children baffled and frightened me and I had no desire to be around them. I was echolalic (I still am to a degree) and no-one understood why.
Beyond pre-school, things weren’t much better. At primary school I would use any excuse to avoid going outside at break times. The other children thought I was weird and wanted little to do with me. I struggled to integrate into the others’ games and preferred to play with the chess set indoors alone. When the other children did interact me it was to mock and bully me, or to tell me that whatever I was doing was wrong.
Things deteriorated further when two of my teachers decided to bully me too. I frequently got into trouble for being sarcastic, talking back and swearing. I didn’t mean to offend, I just didn’t understand the social hierarchy and this, combined with my still present tendency to echo or emulate the words and behaviours I witnessed, got me into a lot of trouble. I started to become frequently upset and very withdrawn. I saw little point in anything. Two of my teachers took advantage of this, belittling and mocking me in front of my peers, which gave my peers licence to treat me even more badly.
I still struggled to socialise and communicate, despite having quite an advanced vocabulary for my age. I achieved good grades at school in everything apart from Physical Education (I’m monocular and dyspraxic), so all my difficulties were put down to nothing other than bad behaviour. “You’re intelligent, so there’s no excuse” was a refrain from both parents and teachers. My sensory issues meant I was often in discomfort or even pain from my clothing. I had almost constant constipation and bowel pain, but other than yelling at me, my parents did nothing. The noise of the other children was so overwhelming and could make me feel dizzy, disorientated and nauseated. The texture of the craft items we used in school made me gag and the fluorescent lighting gave me frequent headaches. When I complained of these problems, I was just branded “fussy” and “spoilt”.
At home, my preferred activities were reading, practising the flute and listening to music obsessively, often the same track tens of times in a row, much to the annoyance of my parents. My mother frequently physically forced me to go outside and ‘play’ with the other children on my street. I would cycle round the block once and ask if I could come in. I would be told “no”. This process would be repeated until eventually my mother caved in and let me return back to my beloved books.
What people didn’t know is that I wasn’t having an easy time of it at home either. My mother was very violent, beating me with planks of wood and shoes as well as her bare hands. I would also be lectured for hours on end about how bad I was and was often punished for infractions such as not being talkative enough. My mother may not have known the word “autism” but she know damn-well that I was different and seemed to genuinely believe that she could beat me normal.
In the year leading up to my transition to secondary school, things really deteriorated for me. I was becoming aware of just how different I was and how difficult I found it to interact with and understand other people at all, especially my peers. I felt like I was an alien and somehow ‘other’, and was baffled by the culture I was supposedly a part of. As if that wasn’t enough to contend with, my mother’s abuse of me was getting worse. I developed anorexia and started self-harming.
Secondary school was a disaster from day one. I was bullied the moment I walked into my new classroom and this continued until the day I left. My refuge was the music department. I found, for the first time ever, a sense of community and belonging. Don’t get me wrong, I was still very much considered “the weird one”, but somehow I was accepted too and this helped make up for the rejection I faced elsewhere.
Outside of school, my life was a blur of studying, abuse and my father having one girlfriend after another. Music was the one thing that kept me sane. It was an outlet for my stress. The downside is that I had learned bad habits from my mother. If I made a mistake when practising the flute, I would punch my thighs as hard as I could, or throw myself against the wall. I had never experienced acceptance or forgiveness from my mother for my mistakes, so I had never learned the skill of self-forgiveness. Errors had to be punished, that was all I knew.
I moved to live with my father just before starting my A-Levels and shortly afterwards I had a mental breakdown and also developed M.E. I barely passed my A-levels, not helped by my father’s verbal and psychological bullying of me. I couldn’t face going to university right away and knew that I would just have to go to the local university and commute from home. The degree of my limitations was finally beginning to hit home and I knew there was no way I could move away and live with strangers, it would literally have killed me.
After a couple of years spend recovering and doing a basic temp job, I finally made it to the local university to study Music. I barely spoke to anyone for the first year, I just couldn’t do it. Finally, on the first really sunny day of the year, I managed to force out some words to a fellow student sitting next to me. I asked if she wanted to go for a coffee. She said “yes” and we’re still friends to this day.
Despite doing reasonably well at university, and making a good and valued friend, I was struggling with day to day life. I couldn’t cope with basic everyday matters or independent living skills and my mental health was deteriorating. I was diagnosed with depression, generalised anxiety disorder, M.E. and obsessive compulsive disorder. I was prescribed the obligatory antidepressants and also some beta blockers, but still I struggled. I knew I was heading for another breakdown.
At the end of my tether, I went to the local branch of MIND. The lady there agreed to see me even though I got lost and was nearly an hour late. Due to my difficulties with boundaries, appropriateness and impulsivity, I had no qualms in blurting out my entire life story to this poor woman. She was kind and just listened. She then left the room briefly and returned with an information leaflet about the autism spectrum. I read it and it described me so well that it was almost frightening. Finally my life started to make sense and I realised for the first time that I wasn’t intrinsically bad and that my difficulties weren’t all my fault.
From there I got in contact with a local autism charity who helped me get an appointment with a local consultant psychiatrist. The psychiatrist put up a fight against referring me for diagnosis, but my delightfully forthright advocate soon got the referral made.
I remember a psychologist once told me, half-jokingly, that he thought he could tell whether a patient was on the autism spectrum from the short walk with them from the waiting room to his consulting room. In an effort to help out the professionals on the local autism diagnostic team, I had produced a 49 page document describing how my traits matched up against various sets of diagnostic criteria. To this day I wonder whether that was the team’s first clue that I might be autistic…
With my partner, advocate and armed with information about my early years from my Grandmother, we entered the consulting room and were greeted by a Consultant Psychiatrist, Speech and Language Therapist and DISCO trained psychologist. They said that my notes (all 49 pages of them!) were helpful. I was asked about my early childhood, my difficulties with communication and social interaction.
I then went into a separate room with the Speech and Language Therapist. She showed me some images and asked me to say what the people in the images were doing and how they might feel. I struggled with this task but did my best.
After nearly three hours of questions, we left the autism team to deliberate. The soon summoned us back into the consulting room and told me that they were quite certain that I was on the autism spectrum.
I had mixed feelings. Part of me was relieved, as finally I had expert opinions to say that my difficulties weren’t my fault and didn’t mean that I was innately bad. I was excited to tell the other auties and aspies I’d met through the local autism organisation that I was now officially one of them. I was keen to get online and sign up to autism forums on which I had only felt able to lurk previously.
However, I did feel some unexpected sadness. I think it was because I finally realised that my difficulties weren’t going to go away. I would always be the ‘weird’ one, the one who didn’t fit in, alone. There was no magic solution that would make my life easier or make the world better able to understand me.
Today, I am proud to be autistic, largely as a result or support from a local autism organisation, involvement in the online autism community and discovery of the autistic rights and pride movement. I am able to work, albeit with the aid of a support worker from the government’s Access to Work scheme, I am engaged and I live in my own flat and get support with day to day matters and life skills from my advocate, support worker and my friends.
So, was getting diagnosed in my 20s worth it? Definitely. I now have a better understanding of myself, have embraced the Social Model of Disability and the disability rights movement and feel confident asking for what I need. I no longer think of myself as bad or wrong. I have finally achieved self-acceptance.”
D absolutely amazed me today with her memory skills, she really does have an incredible memory, the challenge is finding a way to tap into it and utilise it.
We were having our end-of-day chat, sometimes it’s very one-sided (how tired she is depends on how conversant she is) but it’s always a good chance to ensure that she heads off to sleep happy and with a smile.
I was talking about something and did a silly laugh and then said “gosh, that sounded like Annoying Orange”, which D agreed with. She then quoted verbatim a YouTube video she last watched in July 2012. Her Annoying Orange phase was extremely short-lived because I wasn’t keen on it and didn’t want D’s echolalia to surface with her repeating the phrases here, there and everywhere. It was a Super Mario sketch and she did the voices, the dialogue, everything.
I know it was roughly this July 2012 when she last watched it because she can’t spell “annoying” and I’m mega careful that she doesn’t go on to YouTube or surf without me present. For the past few months it’s been (near enough constantly) Mermaid World videos.
I’m amazed that she can remember something she watched nearly two years ago but the general day-to-day (boring) bits have to reminded – washing hands/brushing teeth/putting shoes away.
T’s memory is similarly incredible, he is an absolute sponge for football facts and statistics and, ask him practically any detail about a player – goals/red and yellow cards/stats/when last played – and he’ll instantly say the details.
Needless to say they both find it hilarious if I go upstairs and come back down again without remembering what I went up for, but maybe that’s just because I’m getting old….
This Is Autism
Tonight’s guest post comes from the lovely @manicmippismum aka Karen, someone who is always at the end of a text or tweet. We also share a love of purple, 80′s music and of course, our children, each having a boy and girl on the spectrum.
We have often joked that our girls could be twins – if you discard the genetics, the geographical distance between them and their age difference – they are very similar in their ways and their special comforter.
Over to Karen:
This Is Autism, This Is M:
“The following was originally written late at night on the 4th January this year. I needed to vent and it was badly spelled and punctuated – I have tidied it up. But this is my beautiful girl M when it all goes wrong. Her anxiety is a living thing, it is never the same two days running. Well-meaning people say “oh well she will learn to cope” but really, how do they know? Anyway, #ThisIsAutism.
If asked I have always said that I would take away the sensory issues from my daughter but there is an arrogance in assuming that she would want me to take away her autism, kind of “here was a magic pill she could take.” How can she separate the various parts that make up her autism and decide rationally that she would like it gone? And her super senses are a delight at times to her, when she can see or hear or feel things that I can’t, or when she can recall every single event in time order when I am struggling to recall the day at all, let alone in any clarity.
Today (4th Jan) that changed. I would take her autism away in a heartbeat if I had the chance. To see the anxiety that has been building for the last 3 days, and the behaviours that have occurred as a direct result of this anxiety, are heart-breaking. My beautiful, clever, funny, highly verbal little girl (and she is only seven) has been screaming, crying, punching, kicking and trying to run away. She can’t even tell me what’s wrong but I know. School starts again on Monday and she will be going. Now, don’t get me wrong here, I’m not some sort of monster. My wee girl has a full time PSA (that’s pupil support assistant to the rest of us), who is lovely, she has possibly the world’s nicest infant teacher ever, and she is in a school of only thirty children. Compared with even some special schools (not that are any suitable ones anywhere in the area but I digress) this is a tiny school and the sensory demands on M are kept to a minimum. She has ear defenders, a safe place to bolt to if it all gets too much, which is a den covered with screens and that has a soft blanket, cushions and emotions puppets to cuddle or to try and work out her frustrations. She has her own table outside the main classroom in a quiet area, she has the choice every single day of where she wants to eat her lunch, in the canteen or quietly in the classroom WITH a friend of her choosing, she has a very detailed visual timetable, she has sensory breaks, thera-putty, extra PE sessions, a weighted vest, you name it my little girl has the help and support from all sides.
BUT…Her skin is a mess. She is clawing at her ears which are ragged with eczema/psoriasis that is creeping so far down now that it is showing on her cheeks. The insides of both elbows are covered in a rash that frankly looks like pictures of ringworm from an old encyclopaedia I saw as a child and she has been raking her skins and ripping off her clothes ( yes the old soft label free ones ) that have until recently served her as old faithfuls. Because of autism.
There is no getting away from it. She is being tortured by her own mind. Even though she has been settling in rather well since August and has begun to tentatively build on acquaintance to the point of blossoming friendship with a couple of children (something we didn’t dare even dream of a year ago), the mere thought of school has brought her to her knees. She isn’t sleeping and god knows she has never exactly been gifted in the lie-down-and-doze-off area of life. Her waking, crying out, nightmares and insisting on wedging herself almost inside my pyjamas in an effort to gain a degree of comfort are taking its toll on us all. Last night she was in my bed just after midnight and nothing I could do or say would prompt her to leave. Anyone who tries to argue with an autistic child in the middle of the night knows what a futile task this is, so I take the path that leads to the most sleep no matter how poor quality and let her stay with me.
I am shattered, she is shattered, my temper is shorter than usual and all the kids can tell. I have to drag myself about as the cumulative effect of the sleep deprivation is having a worse effect than usual. On top of that today we had a funeral to attend. Hubby and ds1 were out of town so there were no babysitters and short of not going at all we had to suck it up. The service was outside which I thought would be easier on her sensitive ears then a being cooped up inside which is never a great idea. But I had reckoned without the extra stress of approaching school. On the walk from the service to the graveyard I nearly dislocated my wrist by keeping her from bolting.”
We are halfway through the Easter holidays and one of T’s tasks from school was some SATS revision, he’d been given a couple of test papers to work through.
One of the qualities I admire in T (our autistic high functioning, 11.5 year old) is his drive and determination to do the best he can in everything. Whether it be playing football, his PS3 FIFA game, reading, writing or (literally) devouring his weekly magazines for football stats and facts, he will not be satisfied until he’s done his best. This can be slightly exasperating from a parental point of view, seeing him getting frustrated and annoyed (with himself) in his quest, but it’s how he is.
He did some SATs test papers today and simply whizzed through them, declaring them easy. He is, according to his teacher, working two years above his peer level so there potentially shouldn’t be many challenges.
As we are currently going through the appeals process to try and get him into our first choice of secondary school, his SATs results will (I guess) be taken into consideration and I’ve been gently trying to reinforce the idea that he check the time allocated for each proper test, divide that at the start by the number of questions and take it at a slower pace so that he’s not finished too early. I feel it will be difficult for him to pace himself like this though. Whatever happens, he’ll do his absolute best.
Today was also a day for getting the pool out, by popular request. It still felt slightly brrrr! to me but T and D enjoyed it, splashing and throwing balls to each other. Last summer it didn’t take long before T’s fiercely competitive streak came out as well as his determined streak and every (what should have been) relaxed paddle for poor D was turned into a competition, with her not responding well to continually being beaten by her brother.
This Is Autism
Tonight’s guest post comes from Charlie at @DraconiX_CB, I found his post extremely insightful and I’m sure others will too.
Over to Charlie:
My name is Charlie Baker. I am 16 and currently studying for my GCSE exams which I am taking for this summer. During my free time, I enjoy playing video games and learning as much as I can about anything I can, although I tend to gravitate towards knowledge based upon computers and psychology. The former, because I love computers and everything about them, and the latter… well… Take a look at this list: Asperger’s Syndrome, Obsessive Compulsive Disorder, Sensory Defensiveness, Alexithymia and Spheksophobia. Quite an imposing list of terms, isn’t it? The reason that each of these is mentioned is that they all affect my life in their own dramatic way.
I Am Not Spock:
This post was inspired by a conversation I had with @Suanta1 and @AutisticBird. If you have a Twitter account and don’t follow them already, please do. They are fantastic people and deserve any attention they get.
Alexithymia: A personality construct characterized by the sub-clinical inability to identify and describe emotions in the self. (From the Wikipedia article about this topic:
For the first non-introductory post for my blog, I decided to talk about one of the more unknown and difficult to understand topics that I may decide to talk about on this blog, which manifests itself in the form of Alexithymia. A foolish decision, maybe, but if I start with the most difficult topic, it should only get easier. At least, that’s my reasoning.
Before I actually start talking about the topic at hand, I’d like to bring to your attention the title of this post. For those of you who recognise it as a reference to the first biography of Leonard Nimoy, Live Long and Prosper! For those of you who didn’t, or don’t know who Nimoy is, do not worry. Although I would recommend that you read it, having read either of his biographies is by no means a pre-requisite to being able to understand this post. However, it may be useful knowledge to know that Nimoy was the actor who portrayed Spock in the sci-fi series, Star Trek.
Even though I need little reason to talk about my favourite character in sci-fi, I reference Spock for a very specific reason, and those of you familiar with both the topic and character may have already guessed what said reason is. Spock is a half-breed, a mix between a Vulcan and a human, which gives him very specific and identifiable traits. The Vulcans are a humanoid race that is noted for their tendency to live life following reason and logic, as opposed to emotion. They are not in fact incapable of feeling emotion, but live their lives suppressing it to the point of appearing as truly stoic. However, because of his human blood, the character of Spock is not as capable as other full-blood Vulcans at presenting himself in such a way, and occasionally reveals the fact he does feel emotion.
So, why exactly have I talked about Spock, a fictional character in a sci-fi series? The reason is simple; I am Spock, except I am not. For the fellow literal minded people out there, that may seem a particularly odd thing to say. I am quite obviously not Spock, as I introduced myself as Charlie and do in fact, actually exist. I am, however, very similar. A lot can be said about both me and about Alexithymia by the simple act of comparison between the character of Spock and my life.
As you should have read at the start, Alexithymia is the inability to recognise or describe the emotions that you feel. It is not the inability to feel emotion, as I do in fact feel emotions. Rarely, I will be able to identify how I feel, an event that bring great confusion and uncertainty to my mind, as I am not used to emotions. This is particularly amplified with strong emotions, which can very easily send me into meltdown, should I feel them. The chance of me identifying strong emotions is not actually a great deal higher than that of normal emotions, since they are quite easy to identify incorrectly. However, despite all of this, if at any one time you were to ask me how I feel, it’s still entirely possible that you will get an answer from me. I may manage to analyse recent events and then workout how I think I should be feeling at the time. This will not be how I feel, but how I think I should feel based upon how I believe others would feel.
Sounds like a decent compromise, doesn’t it? Well the problem that arises here is one of empathy. If you look anywhere for information regarding Autism and the Autistic Spectrum, you are highly likely to find a reference to the idea that Autistic people are “unable to feel empathy”. This is simply untrue from my experience with the Autistic community. A lot of the people with whom I have talked over various media, such as Twitter for example, have reported that they do not in fact have no empathy, but instead find that it is increased.
Maybe now would be a good time to talk about what empathy is. There are two types of empathy: Cognitive (The ability to predict others thoughts and intentions) and Emotional/Affective (The ability to share the emotions of another). Many Autistic people find that their ability to use Cognitive Empathy is in fact reduced, and can therefore say that they have reduced empathy. However, I often find that a lot of people also find that their ability to use Emotional Empathy is incredibly heightened with some even saying that they find it difficult to be outside their house due to their ability to feel the emotions of the people around them. Does this sound like a lack of empathy to you? It most certainly does not sound that way to me.
Even though this is the case for some, I actually fit the original description. Due to my inability to even work out what I am feeling most of the time, it becomes almost impossible for me to feel the same way that others are feeling at any given time. Combined with my reduced ability to use Cognitive Empathy, I find that I am an incredibly non-empathetic person. Do not mistake that for apathy or lack of sympathy though, since I am more sympathetic than most people that I know. When I do manage to realise that something is wrong, I often devote as much time and energy as I possibly can to trying to help said person. I spend a great deal of time ensuring the happiness of others, and I would have it no other way.
But how does all of this relate to the character of Spock, who you should remember I brought up at the beginning of this post? Look again at the description that I gave of the Vulcan race. They feel emotions, yet do not show any sign of it in their lives, living by the principles of logic and reason instead. Does that not sound similar to Alexithymia? They are not the same thing, of course, but the concept of logical, reasonable and emotionless thinking is present in both.
The half-breed nature of Spock himself adds a slightly different perspective to this. Although it does make it more difficult for him to be able to suppress his emotions, which is relevant to the previous point, there is also the added element of his alien nature. Being a non-human character surrounded by humans, he is alienated. The others do not treat him the same way they would treat a fellow human, as they see him as different. This is comparable to my life, surrounded by neurotypical people. I find myself treated differently by the other students at my school. Not in a major way, as I am good at “passing” myself as neurotypical, but there are slight differences that even I am able to recognise. Even though most don’t know me as Autistic, they treat me wearily; unsure to how I will react to any given situation. They see my lack of emotional response and are baffled. They may not know why I am this way, but they do know that I am different.
Anyway, I think this post is long enough at this point. At almost 1,300 words in, this is quite a long wall of text to read, and so I feel I should stop now, before everyone leaves. So, if you managed to read through all of that, thank you. Your commitment is appreciated.
This is Charlie, signing out.
Today has been a Sunny Sunday, a day of smiles, squeals and bounces. Needed for both T and D after their individually busy Saturdays.
Posting A Letter:
I’m including within tonight’s post an achievement for D. The title basically gives it away but please read on, it’s definitely progress for her.
D was diagnosed with autism at 4.5 years old and with it comes a severe stranger anxiety and learning difficulties. She gets confused by two many instructions at one time, instructions have to be in separate parts and using clear but gentle instructions with lots of praise afterwards.
She has a monthly arts and crafts magazine which is usually received as a reward for her (yucky and painful) monthly injection. She really enjoys reading it and will usually attempt to follow the crafts instructions herself, again they’re very clear and concise and set out step by step, very visual too.
Anyway…there was a competition in this month’s magazine, it was to draw a design on a pre-printed sock. She got very excited about this and I’ve had to gently reinforce that quite a few proliferation may enter and that taking part is good, but unfortunately not everyone wins. A bit like Sports Day.
All duly coloured, enveloped and stamped and as our nearest postbox is literally 2 minutes walk away and well within sight of our front garden, with no roads to be crossed, just a very straight path, I asked D if she’d like to go and post it. By herself.
We picked a time when it was quiet, lunchtime as we’re opposite woods which are very popular with dog walkers. No one around. Off she set.
And here she is coming back. She did it!
This was a big achievement for D, she’d managed to a) follow an instruction, b) get there and back straight away and c) not get too scared. We’re definitely not talking going anywhere further by herself but one day…maybe…when she’s much older, she might manage a trip to a shop with me waiting outside. Maybe. Of course there would be a lot more to negotiate then, strangers/money/change and remembering to say “thank you” but it’s a start.
This Is Autism:
Tonight’s guest post comes from @Indigo_Reading, a very honest post about growing up with ADHD, but without a straightforward diagnosis.
The link above is to the National Autistic Society’s information page on ADHD but here’s their introductory paragraph:
“ADHD is a condition that makes a person inattentive, impulsive and hyperactive. An increasing number of children are diagnosed as having both ADHD and autism, and many parents are understandably confused about the links between the two. Can a child have both conditions and if they do, how can you best support them?”
It’s a very informative read.
Over to S aka @Indigo_Reading:
“Growing up in the 80s, ADHD was more or less unheard of so the diagnosis process wasn’t straight forward.
I spent many years on various diets avoiding E numbers, in and out of the shrink’s offices and taking cocktails of pills. At one point I was even given diazepam but nothing really worked.
I carried on in mainstream education till I was 14 then went to special needs boarding school, there really wasn’t and still isn’t any proper help. My life is a struggle day to day as my brain doesn’t work in the way others do and my concentration is still very limited to the point I can’t even watch a half hour programme. I don’t lack intelligence but due to how my brain works, things that require repetition I can’t do for long periods of time.”
It’s been a busy Saturday for D, we headed off to have a fitting for her new glasses (déjà vue as we were there same time last week for her eye test) and then onward into town as we couldn’t get a direct bus home.
As with last week, town was busy, there were stares at D, who wasn’t being noisy, she’d either be on her ipad in her buggy or walking beside me, alternating between jumping (because that’s what she likes to do) or just holding my hand. “Live and let live” me’thinks.
So many people have said to me that the first time they are aware of autism is when someone close to them (family or friends) is diagnosed and with the numbers ever increasing, it’s becoming more necessary that those who might not be directly affected are aware. But how?
World Autism Awareness day did not receive widespread media attention, there was a segment apparently on Daybreak (a morning programme in the UK) and a couple of items on This Morning (a – as the name suggests – topical show, again in the UK) but the newspapers seemed to sideline it.
Is it because autism is, for the most part, invisible? Or something else? Is it because it isn’t high profile enough?
I don’t know the answer but with two lovely, diagnosed children on the spectrum, I want to increase awareness for them and everyone.
Sometimes a lack of awareness in those who should have the knowledge, understanding and empathy exists. It is very frustrating. My prime example was D’s experience through Reception and 1.5 terms of mainstream school. Despite a diagnosis and a statement of SEN, she was still described as “flighty” to my face by a teacher who really, really should have taken the time to consider why my anxiety-ridden girl was “flighty”. Thick skin time.
This Is Autism
Tonight’s guest post comes from @TheBeesleyBuzz, an honest, open letter which I can really empathise with.
Over to J’s mum:
This is one of those blogposts that I’ve written and deleted several times
over. We’ve never shared fully the story of J’s diagnosis and story and to
do so would take a book or two.
The biggest shock/surprise/disappointment for us was the education system and just how easy it was for them to not meet a child’s special needs and despite the laws and legislation, it turns out they can (and regularly do) get away with this.
I can feel a rant coming on, but I don’t want this post to become a rant of
what went wrong. Instead I want something positive to come out of J’s
So I’ve decided to address this to those teachers who are at a loss what to
do with the ASD kid in their class.
Remember the day you decided your career? You wanted to make a difference to the lives of children. You wanted to inspire, encourage and engage, didn’t you?
And now you feel disheartened. Disappointed. Defensive. When will those parents ever be happy? All they seem to do is complain. When will the
children sit still and listen to your voice that shouts ever louder?
And there’s one in particular, isn’t there? Seems incapable of sitting
still. Never seems to listen. Tries to escape at every opportunity. Hiding
under the table every day, hands cupped over ears. Screaming. Lashing out.
If only there was a way of getting rid of him. Once he’s out of the class – out of the school even – Things will be better. Things will be calmer. That will be best for everyone, you reason to yourself. ‘For the good of the many’ we’ll kick that kid out.
It’s surprisingly easy to do. As long as the governing body are on-side, there’s pretty much no-one that can stop you. Just exclude the ones giving you grief and all will be ok. It’s happening everyday. A quick google search
will find case after case of children with ASD who’ve been excluded from
school. In fact, in our county, a few years ago, the figures showed that
over 91% of primary school exclusions were of children with ASD and related
I keep hoping that figure will go down, but each week I come across other
parents whose child’s story is uncannily similar to ours. A different school. A different town. But the same story over and over.
And that’s where YOU can make a difference. You can quite literally transform that child’s life. And by changing that child’s life, you will be
making an incredibly positive difference to that child’s family too. And, of
course, you will be setting a positive example to the rest of the class – to
embrace and celebrate difference and support peers rather than exclude,
persecute and ostracise them.
But it will take courage. You may have to stand up against other teachers.
You may even have to stand up against the head teacher’s wishes. Remember,
the easy option is exclusion. But what’s the ethical option? Are you strong
enough to make the decision that is morally right?
Many aren’t. Remember that 91%.
Here’s what would have helped my son. Is there a child you know where this
would help too?
It doesn’t matter if you don’t know anything about ASD or special needs. All we ever wanted was for someone to care and be understanding of our son. If you can do that, then we won’t mind when things go wrong because we will
know your heart is in the right place.
Don’t pretend you know everything there is to know. A true partnership with
parents means regarding parents as the people who know the child best. Don’t
ignore them! When they tell you what makes their child tick – embrace it!
Listen to the medical professionals and make it your priority to do as they
suggest. Yes, it might mean making a few changes to the way things are done, but the benefits are often reaped by many children who will respond better to a different teaching style. And of course, you will reap the benefit of a
calmer child and a calmer classroom.
Make the rhetoric reality. There is plenty of talk about how each child is unique and how every child’s needs should be met. And yet few schools walk the walk. Is it possible for you to truly meet that child’s unique needs? If not, why not? Resources, time, attainment targets. What is stopping you from
meeting that child’s needs. The system is far from perfect and makes it near
impossible to truly meet every child’s needs fully. What can be done as a
school to move things in the right direction?
Does your school have a quiet place for ASD children to go to at lunchtimes
when they are feeling overwhelmed. For many children sensory processing
issues go hand in hand with ASD. We have learned that sometimes true
integration means having a separate desk, a separate quiet place for lunch,
support to help at playtimes. By making these things right for children, they can then be part of things rather than not coping and ending up excluded rather than integrated.
Don’t be afraid to ask for help. I have seen time and time again how schools
want to appear to be doing the right thing and so present one story to
professionals and a very different story to parents. Here’s what happened to
school applies for statement. Assessment for Statement refused with this reason given ‘J is getting on really well at school’. Whilst we as parents
were daily being told that J could get excluded at any moment because he
really wasn’t coping at school. Same child. Same school. Why the differing
story? Because the school wanted to appear to be doing things right when in
reality they were getting it very wrong.
The single biggest intervention that has the biggest impact on J is occupational therapy. That term might sound daunting, but the way I think of
it is that occupational therapy is something that just helps J do what his
body is supposed to do, but struggles to without OT input.
For anyone not familiar with sensory processing disorder, ‘The Out Of Sync
Child’ (by Carol Stock Kranowitz) is a must read. When I read it, it suddenly dawned on me that J’s Sensory processing difficulties were the
biggest hurdle for him and so ASD strategies alone would never fully work.
Whilst input from an Occupational Therapist can be hard to come by (there are huge waiting lists) ‘The Out Of Sync Child’ has real practical suggestions you can put in place. You can also read up on sensory circuits.
Yes it sounds like a huge hassle to put that in place in a school setting, but the benefits can be mind blowing.
We home-schooled for three years because of how wrong schools got it for J and both morning and afternoon, we would start with a simple set of OT
exercises – press ups, star jumps, carrying a heavy load, balancing on one
leg, bounces on exercise ball. The difference? Focussed work, a calm
attitude, cooperation, and a massive improvement in handwriting.
To be honest, I don’t mind what my sons handwriting looks like, but it does
act an as indicator of everything else that’s going on inside his mind and
body. For J, neat hand writing equals calm mind and a ready to learn
I could write forever on this topic, as you’ve probably guessed. Ultimately
all I am asking you to do is not write my child off as unteacheable, unreachable or as badly behaved. There is a reason he is the way he is. We wouldn’t change him for the world. He has some amazing qualities. He even has incredible academic ability. If you’d taken the time to get to know him,
he could’ve been pushing your school stats sky high as he’s already at
secondary school levels of achievement despite only being in year 5 of
primary school. How has he been able to acheive this massive improvement?
How can it be that he is now a child that can shine, thrive, flourish.
That’s how his new teachers describe him you know. You might find it hard to
believe but they tell me his behaviour is impeccable and that he is a
pleasure to teach. Same child, different teacher.
So next time you come across a child who’s different, difficult, disruptive.
Remember you have a decision to make.
Sincerely, J’s mum