Thursday, 20 June 2013

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. 



8 comments:

Stephs Two Girls said...

Brilliantly written, it's as if you've captured my thoughts and put them down, thanks! Will be keeping an eye n when you do the 'telling the peers' - tricky one that. But you're right, they need to know to be given the chance to understand. Good luck! X

BooHooMama said...

Thanks Steph. Just had a great 'Transition to KS2' meeting this morning and decided NOT to bring it up today, but have emailed a couple of great articles to school for Boo's present and next teacher to ponder. These are great:
http://www.friendshipcircle.org/blog/2013/04/12/lets-talk-about-inclusion/

http://www.autismspeaks.org/science/science-news/top-ten-lists/2012/peer-training-outperforms-traditional-autism-interventions

Orli D said...

Thank you for writing exactly what's running around in my head this past week after we've had our "mainstreaming" conversation regarding our son. He is four, going to reception next year at the same school where he is now attending nursery, and still it's so hard to get the staff to understand his problem and needs, I don't even know where to begin with explaining it to him, and to his class! He has Ocular Albinism, and not only is it rare, it also makes him one of the "invisible kids" because apart from the fact that he has glasses and wears a hat, he looks "normal".
I was walking around with those same questions, with those same concerns...
I wish you good luck and I wish us both the ability to find the right answers!
Orli

Unknown said...

What an amazing post. There is a boy in my son's class with Special Needs. He sometimes displays some pretty extreme behaviour as part of his condition and the other children are in no doubt that he is different. However, they are amazingly accepting of this. On the whole they don't seem upset by it, they know that he finds some things tricky and that he will be treated slightly differently by the adults in the class and they get on with it, infact my son takes in things for "golden time" that he thinks this child will enjoy. Sadly it is the parents who need educating. I have been horrified by some of the things people have said and done- including asking their children to write down events involving this boy in order to keep a record (because they want the school to send him somewhere else) I'm afraid the children views will become more like their parents' and not the other way around unless things are discussed openly and honestly.

BooHooMama said...

Thanks Orli, good luck to you too. Thanks to you, at least one more person knows more about Ocular Albinism! ;-)

BooHooMama said...

Thanks Daisy, I am so sad to read about those parents at your son's school - sad but not all that surprised. We are lucky to belong to a very caring school with lots of open-minded parents... although sometimes there is a little whispering at the school gates about children who have special needs, borne from curiosity. I think parents ARE generally interested and want to know more, but don't feel comfortable asking. I myself can remember being told not to stare at people with special needs, and being shushed when I asked questions - which as a child gave me the message: you have to pretend that you don't notice that that person is different.
So even as adults, we sometimes feel it would be rude to ask outright, 'what's going on with that child?', because we don't want to offend. So I do wonder sometimes whether schools could or should share this kind of information more openly, to let parents off the hook! I have a friend who gave an information sheet about her son's condition to all his classmates' parents. (Maybe that could work for you, Orli?)
Your description of your son's friend reminds me of a child in one of my daughters' classes, and there too the children just accept that that's just the way he is. It's lovely. It was the same for Boo when she was younger, but I think as the children begin to grow up, the gap widens between the kids with special needs and everyone else. I also think they become more aware (or it is just more rigid?) about which behaviours fit their idea of 'normal' and sometimes 'acceptable' follows suit. So in addition to sharing information in the first place, there could be updates at different points through school.
Having said all that, though, I don't know if making everyone aware of the details of Boo's condition would help or hinder her, which is why I'm still on the fence! ;-)

Adrian Grant said...

This reminds me of when I was in primary school when, every now and then, a girl would come to spend the afternoon with us. She had some condition stemming from having had a hole in her heart. She had a squint and was mentally slower, but was a happy and cheerful girl.
Before she arrived, her condition was explained to all of us and please could we be nice with her; the result being that during those afternoons she was the most popular kid at the school. At playtimes a big group would run around playing with her.
Not sure what the reaction would have been if she’d just been plonked among us, with no explanation. Quite possibly it would have been standoffishness due to confusion.
I think that if kids are given some explanation (even one they don’t understand) they will generally try to do the right thing and be positive and helpful. Just the act of trying to explain something to children will normally be taken well, as you’re providing a kind of compliment to them, particularly considering that they live in a world where so many things go unexplained by adults.
You’re saying to them “I think you’re capable of understanding xyz, and am trusting you to properly exercise your own freedom, by responding in the right, responsible way.”

BooHooMama said...

A couple of years ago, the school invited me to go in on World Autism Awareness Day, to give talks to each class about Autism, the difficulties Autistic people might face and some of the amazing strengths they might have.
I'll never forget how impressed they were when I told them all about Boo knowing all the world flags, capital cities and tube stations on the London Underground!
She was a bit famous at school after that! :-D