Drama Queen

 Last Thursday, I woke up early, having hardly slept due to the stifling summer heat, and was grateful that the air had cooled down overnight. I opened the curtains to enjoy the fresh damp of the dewy garden, then went downstairs, made myself a coffee and brought it back to bed, and it was only then that I realised it was Hospital Appointment Day.  I was all at once stopped in my tracks and sickened by that awful kicked-in-the-guts feeling you get, when you remember something you have been dreading.

After that, my whole getting ready routine was refracted through a strange and sad prism of imagined meaning- the shower didn’t immediately work; what did that mean? Was it a sign? More of my hair came out than usual when I washed it; was this a warning? A prediction? I knocked my favourite and sparkliest, rainbowiest dangly crystal down as I passed in front of the windows; why that crystal? What was the Universe trying to tell me?  In my heart, I felt a strong sense that I was living the last few hours and minutes of a sweet ‘before’, to which the ‘after’ would be forever bitter in comparison. It took me a few goes to find appropriate music to mark the occasion. SYML seemed the obvious choice, but instead I went for Radio 1, in case of further messages from God/the heavens. Bloody drama queen! 🤣 

On the way to the hospital, in the passenger seat of Mum’s Fiesta, a seat I only ever seem to sit in when I’m going to the hospital, I felt sick. A few days before, on the way for one of my scans, Mum’s car had begun to squeak again. It used to squeak all the time two years ago when she was driving me to my radiotherapy appointments, 5 days a week for 5 weeks. Even the car knows something’s wrong, I thought.  I began to weep, tears for fears. I felt actually terrified. 

Long story short, it went SO much better than I thought it was going to.  I can’t even describe the relief.  The bubbly consultant and his upbeat specialist nurse put us immediately at ease.  

“Well, the good news is, we can get it out,” he said matter-of-factly in a friendly Australian twang.  

“Ok, good. What’s the bad news?” I asked, feeling like my guts were about to drop out of my arse.

 “There isn’t any bad news,” said the nurse gently, with smiley eyes above her Covid mask.

“Do you want some bad news?” the consultant asked in mock surprise, “ahhhh... well, you’re going to need an operation, so that we can get it out. And some chemo to mop up any bits left over.”  I already knew this, so it didn’t feel like bad news at all.

That was it. Yes, I was given the usual info about risks of surgery, what could go wrong in the worst case scenario, the stuff they have to say.  But after that, a quick examination of my now no longer churning tummy, and I was free to go.  Back in the hospital foyer, I felt like I was walking on air, so much lighter than I’d felt half an hour ago.  I could tell Mum felt it too.

Back home, Peeka loitered while I told the Ex how things had gone, and my eyes locked with her scared dark chocolate ones.

 “It’s all ok, I just have to have another operation and some treatment, it’ll be just like last time, Daddy will stay with you while I’m in hospital.”

“Ok,” she said, taking it all in her stride, before returning to Project Diva, her latest obsession.

I went upstairs to see Boo in her new bedroom.  The night before, at bedtime, she had asked me to give her a hug.  She hates hugs with anyone apart from her Dad, who she idolises. She especially hates Mum-hugs.  But that night she was tearful and upset. I jumped at the chance for a cuddle and asked what was on her mind.  

“I’ve been thinking a lot about death,” she said.  

“Oh, Boo, have you been worrying about my death?”

“No, mine”, she answered with a wobble. “Do you think when we die we get reborn?”

“Nobody really knows what happens, apart from the people who have already died.  Some people believe ... ... ... .  2 minutes of my musings on death and beyond. 

“What do you hope happens when we die, Boo?”

“I hope I live on,” she said simply.

“I hope I do too,” I replied.

“Was it bad news?” she asked.  So often I assume she’s oblivious, not engaged, unconnected.  She is none of these things.  She feels very deeply, she just doesn’t show it very often.  I shared my news and she said, “Ok, can you go now?” A typical Boo response. I have my information, you can leave.

I popped my head around Pips’ door, and told her my news as briefly as I could. Pips isn’t into long conversations with me, unless she has initiated them. I treasure them, when they happen.  This wasn’t one of them.

“Epic,” she replied, and continued putting on her make up.

Everyone is ok, I thought to myself.

On Friday morning, I made myself a coffee and brought it back to bed. Things felt back to normal again. Life as usual. Life, with its ups and downs. I opened the windows and heard the noise from the road outside, and, in between cars, buses and lorries, the birdsong from the trees out the back. 

Inclusion

 If you are a parent, chances are that you know a child with Special Needs.  I imagine your own children, even if they don’t have additional needs themselves, regularly share their learning environment with other children who do.  But how much do you really know about the special needs of your children’s classmates?  How much do you want to know?  How much should you know?  Is it any of your business anyway?  Well, yes; I believe it is your business!  I believe that your knowledge and understanding of the special needs of children like my daughter, is a crucial stepping stone to your child’s acceptance of my child, and all the children like her (and different to her) with special needs.  It is this acceptance which will make the difference between my daughter being able to function happily in society, or being an outcast.  It will also enable your child to build valuable social skills and become a more caring person, by teaching them how to relate to people who are not like them.

My 7 year old daughter, Boo, was diagnosed with Autism Spectrum Disorder just before her third birthday, and has had a Statement of Special Educational Needs ever since she was in Nursery.  If you had been a fly on the wall in that nursery classroom, Boo wouldn’t have immediately stood out as being different from the other children.  You might have noticed that she was still in nappies at first,  or that she often preferred to play on her own, but on the whole, she appeared to be very much a typical three year old.  Certainly, Boo’s classmates were unaware of any major differences between her and them, and Boo herself was content to be there, doing her own thing and mingling with her peers as and when she felt like it.  You might not have noticed that she found it hard to have a conversation, or that she was unduly worried by certain sounds, or fascinated by the texture of sand in her mouth.  And you wouldn’t know that she was beginning to read her Reception-aged sister’s reading books and also, strangely but kind of impressively, speaking Spanish with confidence at home.

Boo had full-time one-to-one support when in Nursery, to help her to access all areas of the Early Years Curriculum.  The areas of ‘Communication and Language’ and ‘Personal, Social and Emotional Development’ were particularly problematic for her, so, under advice from the Speech and Language Therapist, Boo was supported in learning the basic skills in these areas of learning, in small groups with other children who would also benefit from extra support.  Boo was also given the opportunity to work with children who were super-sociable and very able communicators, so that they might model speech and other social interactions appropriately for Boo; for example, how to take turns, or to look at the person you are talking to.  While these children were helping to teach Boo about conversations, she was helping them to learn patience and the most valuable lesson of all, I think: that we are all different. 

 Boo is approaching the end of Year 2 now, and is a very able student who has achieved and exceeded the expected levels of attainment for her age group in many subjects.  Socially she has come a long way too; she has two ‘BFFs’ and the three of them, she tells me, are collectively known as the BFC – Best Friends Crew.  I am so proud of her.  Now that the class have grown up and are almost ready for Key Stage 2, I think the differences between Boo and her peers are a lot more obvious than they were in Nursery.  Now she stands out more, and the other children do notice that she is different.  Not necessarily in a negative way, but different all the same.  They have all arrived at the last stretch of Key Stage 1, but Boo arrived there by a slightly different route; taking in different views along the way. 

Of course, nobody says anything about this to Boo or her classmates at school – it’s just accepted as part of the whole ‘everybody’s equal and everybody’s different’ ethos , which is fine.  But I wonder now whether perhaps somebody should say something.  It is naïve of us adults to assume that the children don’t notice these differences between individuals, so maybe we should be addressing it head-on.

I can remember being 13 years old, and there was a kid in my class who had a learning disability.  I realise that now.  But at the time, because it hadn’t been explained to us, we didn’t understand why he was behaving in a way which seemed so odd to the rest of us.  He behaved inappropriately, which alienated him from others.  He was loud, shouted out random or obvious statements, his voice had an unusually slow, deliberate monotone quality.  He was easily angered and often seemed stressed.  He was occasionally physically aggressive.  He came in for a lot of teasing, I am ashamed to say, from many of us.  He was excluded from conversations.  People called him names, behind his back and to his face.  He must have been miserable.

 If someone had just sat us down at the beginning of the school year, and explained to the rest of the class that this young man had special needs and what that meant, specifically, for him, then I think his experience of school would have been totally different.  If we had been taught to understand the ways in which school, and life in general, could be difficult for him, then I think most of us would have wanted to help him, or at the very least, not give him a hard time.  He may have had strengths that would amaze us, if only we had bothered to find out.  We might have wanted to get to know him, not just in spite of his quirks, but maybe because of them.

This vulnerable youngster was able to access the curriculum in mainstream education, possibly with some support -I can’t remember- but at any rate, his educational needs were being met.  Is this what inclusion means?  His personal, social and emotional needs were not adequately addressed, and as such I believe he was let down by that particular high school and by us, his peers.  Of course, education has moved on considerably since the mid eighties when all this took place.  But kids will be kids, even now.  How can I make sure that, going forward, Boo is not so misunderstood by her own classmates? 

At a SEN review meeting at school earlier this year, I did raise the issue, but wasn’t quite brave enough to take the next step in bringing Boo’s differences so boldly out into the open.  When I was asked if I wanted staff to talk to the other children about Boo’s Autism, I was unsure, so I said, ‘…not yet.’

You see, Boo desperately wants to fit in.  She wants to be like her classmates.  Yes, she often prefers to be alone, particularly at home, but at school, she likes to be in the know, one of them.  She doesn’t really seem aware that she is different to her friends, she has never talked about it, at least, not to me.  So I don’t know if I want to burst her bubble just yet.  Would her classmates’ new and improved awareness of Boo’s special needs make things uncomfortable or embarrassing for her?  Would she be patronised, or worse, teased?  I don’t want to do the wrong thing by her.

So, while I think about it some more, I have a favour to ask.  If your son or daughter shares a class with a pupil who has special needs, please talk to them about it.  Talk to their parents, say hello.  Ask questions.  We don’t need to pretend that all our children are the same.  Equal, yes, and in many ways similar… but not the same.  Make sure your child understands that we are all different, and that different does not mean less.  It just means different.  Your child knows which pupils are different (or will one day come to know it.)  If your child is curious about or confused or upset by the behaviour or appearance of children they see or those they already know with special needs, then please discuss this with them openly and honestly.  I appreciate that that might be difficult, and you might not have as much information as you need to feel comfortable discussing the matter.  If that is the case, you can ask a teacher, or better still, ask the child’s parent how to explain it!  I think most parents of kids with special needs would welcome the opportunity to share information which will promote better understanding and more acceptance of their child’s differences and ultimately make life easier for them. 

Boo was invited to a party this week.  It was the only (non-BFF!) birthday party invitation she has received ALL YEAR.  She was beyond excited!  She ran out of school, flapping the invitation in front of her, shouting, ‘I can’t believe it!  At last!! I got invited to a party!!!’  (Actually the whole class was invited, but that didn’t dull her joy at all.)  She has watched the party invitations being flapped by other kids in her class all year long.  She has heard her classmates excitedly discussing awesome pool parties and Harry Potter parties and laser parties, right down to the details of where and when, what time… and then has been utterly baffled as to where her invitation might have got to.  She has watched her older and younger sister trot off to their friends’ parties and come back with party bags bursting with treats.  

Just to be clear, I’m not having a go at everyone we know who had a party and didn’t invite Boo (after all, we only invited the two BFFs to Boo’s party, at her request, and I am well aware of the cost per head of most types of kids’ parties.)  But I am trying to make the point that Boo not being included in her peers social events points to a gaping chasm in the whole concept of inclusion- that educational inclusion is only part of the story, and that society as a whole needs to address the wider issue of social inclusion and true acceptance of individuals with special needs, if children like Boo are going to flourish as adults. There is only so much that schools can do to nurture friendships and promote the many, often hidden, strengths of kids who are different.  The responsibility lies with all of us. 

I’ve said it before, but I hate the word ‘disabled’.  It implies ‘less’, ‘not as good’, ‘reduced’, ‘lacking’, ‘disempowered’.  ‘Disabled’ is only one side of the coin.  Yes, my child may have difficulties, but she also has amazing strengths, which surely make her MORE in those areas specifically, not less able generally.  The word ‘disabled’ describes my daughter only in the negative, only highlights that there are things she cannot do.  What about all the things she CAN do, and for that matter, do better than most kids her age?  Reading, spelling, correct use of punctuation, Maths, ICT.  Her vast knowledge of kids’ computer games!  Her unbelievable capacity for factual information!  Her astonishing visual memory!  Why, when ‘retarded’ is considered offensive, are we still using the word ‘disabled’ to describe people who are very able indeed?  How is that an accurate or inclusive term?  Did anyone see the Paralympics last year?  Hello?!

But it’s not about a word, it’s about perception.  We need to get this message across to kids today, that all people are to be valued for their strengths, not written off because of their difficulties.  It’s important that our children with special needs are supported by their parents and teachers, but essentially, by their peers.  Peers need to be supported in learning how to do this, so that eventually a culture of acceptance can filter through into the workforce and the rest of society.  All children need to learn about the many different kinds of people they will meet in life, including the differently-abled, their challenges and their gifts.  When these issues are brought out into the open, it is an opportunity for all of us to learn more about acceptance, which is, I think, the ultimate aim of true inclusion. 

WORLD AUTISM AWARENESS DAY 2013

...and how to do your bit without breaking a sweat!

World Autism Awareness Day (WAAD) 2013 is almost here (2^nd April, yay!) and it’s great to see that  the global online Autism community have ramped up their efforts to spread the word and help to raise awareness.  I have been particularly excited by the 'Light it up Blue' campaign for the charity Autism Speaks in the USA and beyond, which has famously led to some of the world’s most beloved landmarks being bathed in blue light to mark WAAD in spectacular form.

This being my first WAAD as an ‘Autism awareness raiser’, I was all fired up to join in the excitement,  so I got my blue lightbulb ready for the front room :-) and then set about learning more and looking for events to take part in here in the UK.   The National Autistic Society was my first stop.   

Autism Politics for beginners

The first thing I learned was that the National Autistic Society are not related to Autism Speaks and the Light it up Blue campaign.  The UK affiliate of Autism Speaks is called Autistica.  I discovered that Autism Speaks and Autistica's main aims were based in scientific research around Autism, while the NAS approach to Autism is more person/family centered.   

I understand that Autism Speaks is researching the causes, prevention, and treatment of Autism.  I’ve also come across the word ‘cure’ in this context.  This upsets and insults a lot of people in the Autism community, including many adults with Autism who do not want Autism to be viewed as a disease, a fault or a flaw; something to be prevented or eliminated.  I myself can become quite touchy about the term ‘disorder’ in my daughter’s diagnosis of ASD, which implies that those with the condition have something wrong with them.  No.  My Boo is not wrong, she is different.   I am a member of the ‘Different, not less’ club.  I am offended by suggestions that my daughter and those like her are somehow not as good as so-called ‘normal’ people.  It is just plain reductionist.  I don’t even like the term ‘disabled’, for the same reasons.  I prefer ‘differently-abled’, but at this point I know I am losing some of you- you are looking at me sideways and silently calling me a fruit-loop.  That’s fine.  I’m not here to dictate how anyone else should think.  I am not an ABA mum, a Son-Rise mum, or a Warrior mum, withholding vaccines and banning wheat and dairy… but I fully respect those of you who are.  We are all doing what we believe serves the best interests of our children.  

 I happen to align myself more with the NAS way of thinking, but it has to be said, the NAS do not seem to be so excited about World Autism Awareness Day and as such, I think they may be missing a trick. The 'Light it up Blue' campaign has glued itself to WAAD, as has the 'Go Blue for Autism' campaign in Australia and this has gained everyone's attention.  This, in my opinion, is the way to get the ball rolling in the UK, if we want perception of Autism to change.  I really think the NAS should get on board with BLUE and add their own slant to it.  The fact is, regardless of which side of the fence you sit on, the whole BLUENESS idea works, because it’s easy, the hard work has already been done, it’s FUN, and deserves to be as huge here in the UK as it is in the USA and Australia.

A few thoughts for those who are a little green at going blue...

If you are a certain sort of person, and you click on NAS or Autistica's fundraising pages, you will be excited.  When I clicked on Autistica's fundraising page, the words ‘marathon’ and ‘Kilimanjaro’ punched me in the face, so I quickly unclicked.  In my search for more realistic ways to take part, I only found a handful of community events planned for WAAD in the UK, and nothing close to where I live.  Hats off to anyone who is going to organise their own fundraiser, but that's not me (at least, not this year!)  In any case, as much as I realise that money makes the world go around, and that there are countless causes supporting people with Autism in need of money, I personally feel that the important work lies in raising awareness and acceptance of Autism - once we get that sussed, the money will follow and hopefully go where it needs to go.

So, in addition to the Empire State Building and the Sydney Opera House, the London Eye will be lighting it up blue this year for WAAD, as will Birmingham University.  And my front room.  ;-)  I would love to hear about any other venues, iconic or otherwise, going blue for Autism awareness this year!  Members of the Autism community - come on, just do it.  It’s such an easy thing to do: look- I’ve even given you a link to buy your blue bulbs here.

... and, if you want to sprinkle a little sugar on it, buy online via The Giving Machine and you can donate a few pence to your chosen charity or cause at the same time, at no extra cost to you.

I know, putting a blue light on in your front room may seem silly, trivial and a little pointless.  It is not a very grand gesture.  It is not a marathon or a trek up Kilimanjaro.  It’s not even a fete or a bun sale. But sometimes, lots of people doing something tiny can add up to something big.  Autism AWARENESS is what WAAD is about, so let’s raise awareness, one person, one lightbulb, one conversation at a time. Looking for other ideas to mark the occasion?  There are a few suggestions on the Autism Speaks and Autistica websites.

The simplest ideas are often the most effective.  If you design or borrow an Autism Awareness Facebook cover picture for the day (or the whole of April, Autism Awareness month), then how many people will see it?  LOADS!  Or have a look at one of the thousands of Autism related Facebook pages, blogs or Twitter feeds.  Like and share a page, subscribe to a blog, retweet!  Easy-peasy.  

My favourite idea is to wear blue to work (or wherever else you might be going!)  because for me it necessitates buying something new, which is always good.  ‘Go shopping for Autism’ – sounds fab doesn’t it?!  If I can’t find anything blue in my size then I’ll paint my nails blue instead and wear blue eyeshadow:  ‘The Autism Makeover’-are you in?!   If we can do something that prompts one thought about Autism, which otherwise may not have occurred, then we will have done something wonderful.  We will have paid forward our awareness and acceptance of Autism.  With any luck, it could lead to a conversation about Autism, which may just reach someone who can learn something new from it, and that awareness and acceptance could ripple outwards from us, to them, and travel who knows how far?

Please, if your life has been touched by Autism, GO BLUE for Autism on World Autism Awareness Day in whatever small way you can; encourage others to do the same and help raise awareness and acceptance of Autism.  Feel the love and pass it on!  Tuesday 2^nd April.