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. 

What Mama Did...

I have taken a break from blogging for a while, since there is something a little bit soul-destroying in it, I’ve found.  I don’t really know what I expected when I started this journey of words and feelings, I just blindly jumped into it without thinking or feeling anything much except ‘Woooooooooooooo I’m doing it!’  I didn’t think about who my audience might be, if there was any audience at all.  Then I thought I did know. Surely it was other mamas like me?  Mamas living with Boos of their own, mamas on the front line, mamas in the trenches of Autism.  Mamas covered in spaghetti sauce, bite marks on their arms, sleep deprived, depleted, yet so full of love for their kids they could burst.

Then there was the inevitable self-doubt.  Who do you think you are, Mama, to be sharing your story as if anyone cares?  What can you tell these women that they don’t already know?  I’m not an authority on this.  I’m just one of millions.  And there are thousands of amazing ladies (and gentlemen) out there, blogging about life with their Autistic children, doing it so much better than I am.  I don’t really have anything new to say, that they haven’t already said more eloquently and beautifully.

Not being much of a self-marketing maven, my readership is pretty much limited to my mum and a few kind souls who know me already and read out of interest or politeness (thank you, guys!) And a few lovely people I’ve never met out there in FaceTwit land who stumbled across my blog (and I’m so glad you did!)

I haven’t been writing at all lately, but I’ve been really busy.  Good busy.  Raring to go, motivated busy.   I’m going to take the spotlight off Boo this time; give her a break, and shine it on… ME.  Because I am a mum, living with Autism – like so many others out there – and we mums (ALL mums, and especially mums of kids with special needs) never, ever shine the spotlight on ourselves.  It is just not done or proper or heard of.  So I’m doing it now, just cuz I'm nearly 41 and I can.

For those of you who have never met me, I am 5’5” and used to weigh 240 lbs.  That was around 160 lbs of *me*, and around 80 lbs of frustration, inadequacy, depression, hopelessness, sadness, anxiety and ice-cream.  I am what you might call an emotional eater.  My weight in my 20s settled at around 160, so I have never been a skinny mini, but as I approached 30 life brought more and more challenges, and I started to eat my feelings.  I turned 40 last year and didn’t really celebrate it, in the truest sense of the word, because I wasn’t ready.  Not not ready to be 40 – I didn’t care about the age thing- no, I was not ready to be the centre of attention.  Which, if you do know me, is a joke.  I am the girl who sang, ‘Fame- I’m gonna live forever…’ at age 10, and truly believed it.  I wanted to be a star – all singing, all dancing, all daahhhling.  Limelight was what I lived for.  Anyhoo.  People change.  I have spent the last decade trying to hide, trying to avoid being noticed at all.

When my 40^th arrived and it was my chance to be the star- if only for one night- I declined the  leading role, and went for a very low key, family thing and a quiet little lunch and a few afternoon cocktails with one of my beautiful besties.  All my friends threw parties for their 40ths. I didn’t understand myself, not feeling ready to throw myself a party, I mean, what was I waiting for?  Much contemplation followed.

After rummaging around in my feelings and unpicking them, I figured it out.  My life had not turned out the way I thought it should have.  I was feeling unsettled, because at 40, my actual real life bore no resemblance to the one I had imagined years before.   I thought I’d have it all together by 40.  Er, no.  

My life had been on hold.  I had been so busy with the kids lives that I had stopped living my own.  I had been exhausted for years.  I hadn’t been looking after myself.  I was out of shape physically and spiritually.  I was totally depleted.  My idea of fun was a Chinese takeaway and early to bed.  I had no career, no job.  I couldn’t (and wouldn’t, even if I could!) call myself a housewife, since I did no housework, and  some days, I wasn’t even sure if I was a wife, since I had very little to offer that he seemed to value.  Even worse, I found I didn’t really care whether he valued me or not.  There was a lot of resentment, that I had the shitty end of the stick in our marriage.  When all your energy (hardly any at that) is used up just getting your kids up and off to school in the morning, there’s nothing left for anyone else.  I felt underappreciated and angry.  More on that another time maybe.   I just wanted to get through my day, with the kids fed and in one piece, so that I could get to sleep.  This was not living.

Shortly after my 40^th birthday, we cleared out the loft at our old house.  Amongst many treasures, we found lots of photos.  BooHooPapa and I have been together since 6^th form, so he had lots of photos of a younger, thinner me.  Looking at those photos, I was struck by how gorgeous I was.  I’m not saying that in a vain way – I’m really not.  Go right now and look at a photo of yourself aged 18, and I promise, you were gorgeous.  Because *ALL* 18 year olds are gorgeous, they just are.  And so was I.  

 And yet, when I was 18, I thought I wasn’t thin enough, or pretty enough, or anything enough.  At 18, I looked to the future with hope that one day (and definitely by the time I was 40!) I’d grow up into the person I thought I should be.  I felt sad, remembering this not-enoughness.  If only there was a way to get a message from your 40 year old self to your 18 year old self – DAMN, would I give that  bitch a talking to!  And I realised this: that one day, twenty-odd years from now, I will look at photos of myself at 40 years old, and think I was gorgeous.  As I am right now.  And it suddenly dawned on me, OH MY GOOD GOD, I have just spent my entire life not doing things that could have been fun, because I thought I wasn’t this enough or that enough – what a RIDICULOUS waste.

So I thought about the things I had always wanted to do, and set about doing them.  Not major things to anyone else, maybe, but exciting for me.  I wrote my articles for the freebie mag, started my blog, went to see Adam Ant (it was like I was 9 years old all over again!)  I started volunteering at my kids’ school, which I love.  And I got busy looking after myself.  Eating better, sleeping earlier (if not all night!), getting some exercise and chilling out.  Listening to ‘Love Action’ by The Human League really loud on my ipod.  Singing in my kitchen.  Pinteresting.  Reading.  Listening to podcasts.  Meditating.  Power-walking around my neighbourhood like a loon.  Smiling at dogs and waving at babies.  Planting sunflowers.  Tweeting under an alias.  Humming in the supermarket.  Living my life!  I’m fortunate to have had the time to do these things this year.  After being at home with the girls for these past nine years, I decided that I deserved a year off to do whatever I wanted to do, even if that was only napping.

Have the kids suffered because I put myself back onto the to do list?  No, of course not.  Is life now perfect?  Is it chuff.  In many ways life is as shite as ever.  Money-wise, we have had an awful year.  And recently there have been extra challenges to overcome, in that I am now a single parent Monday-Friday.  I have to make my own tea and everything.  But it’s a healthy tea.  While the kids are in school, the house still doesn’t get cleaned, but that’s because I am busy pounding the streets of my neighbourhood, working up a sweat and a good few endorphins, blasting my ears with fabulous 80s grooves and feeling like I am in the video.  I feel so much better for it.  And I lost some weight too. Win-win.

Mamas, put on your own oxygen mask first, before helping others.  If we diminish ourselves by ignoring our own needs, there’ll be nothing left of us worth having by the time we are in a position to really give back.  Fill your own cup first, so that you can nourish others from the overflow.  Just go, ‘Wooooooooooooooooo!!!  I’m doing it!!!’  Not everyone will like it, some people will slag you off behind your back or even to your face – so what???  You might make an arse of yourself - again, so what???

In the words of Hunter S. Thompson, “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming, ‘Wow! What a ride!’”

If your question is 'Shall I?'  Then let the answer be a resounding YES.

What are you doing for yourself today?

WAAD - Not What I Expected

Well, I'm just sitting down with a cuppa, and reflecting on yesterday, World Autism Awareness Day.

My local support group, ZigZag Leeds, was holding a coffee morning in honour of the big day at their community shop and meeting place, so I put on my blue dress, painted my nails blue, swished on some blue eyeshadow and off I went.

Lisa and Carolyn who run the group had really gone to town, with the shop front all festooned with blue balloons, blue posters in the windows and blue buns for sale.  It was lovely to see so many familiar faces and some new ones too.  And it's always lovely to meet other kids with Autism; I'm always intrigued by their uniqueness.

At the end of the morning, Lisa had planned for us to release some blue paper lanterns and balloons.  But it was so windy outside, that all but one of the lanterns ripped and the one that remained intact was set alight but then blew sideways into a row of cars and had to be chased and rescued, as it was heading for the Royal Mail sorting depot nearby!  When the blue balloons were released, the wind whipped them around and back down to the ground, where the kids gleefully stomped on them until they were all popped into tatters!

It got me thinking, about how things don't always go exactly the way we plan, but maybe they work out the way they are meant to.  The kids had a blast, the adults had a good laugh at the lantern/balloon fiasco, and the coffee morning raised some money for the support group.

I put my blue light on last night.  I didn't see anything on the news about World Autism Awareness Day.  The Leeds Arena disappointingly didn't get back to me about lighting up blue. I felt a bit deflated at the lack of hype and I didn't really feel like I had contributed to raising awareness.

What I hadn't considered, though, was that perhaps my job yesterday was not to raise awareness, but to be given some.  At the coffee morning, I spoke to the mum of an adult with Autism, who was doing just fine with her life.  She told me about some of her daughter's past difficulties and how she has gradually overcome them.  Her daughter travels independently to college, works part-time and is a happy adult with a strong support network.  The young lady and her mum have some anxieties about what will happen when she finishes college, (which just shows that we parents never really stop worrying about our children, no matter how big!) but our short conversation has really given me hope for the future and made me realise that some of my beliefs about what Boo may be capable of as she grows up may have been limiting.  Perhaps even now I am doing too much for her.  Something to think about.

I guess you could say that what happened to me on WAAD (when compared to the day I had imagined) could be described as 'different, not less.'   :-)