Back to 'Normal'

 

I had my latest cancer surgery just over 4 weeks ago.  They removed my gallbladder (which, apparently, you don’t miss) and a chunk of my liver; about 30% of it.  My (very wrong!) friend asked if they were going to eat it with some fava beans and a nice Chianti , but strangely this only grossed me out because I pictured a piece of nasty diseased liver on the plate, and not necessarily because it was a piece of my own human liver.  Which possibly makes me almost as wrong, I’m not sure!

This being my 4^th surgery in 3 years, I feel I’m a bit of a pro now in ‘what to do to get out of hospital quickly’.  I stayed in for four nights and then went to my mum’s to recover and isolate for 14 days.  I ended up staying a little bit longer due to another Covid swab and more self-isolating ahead of an arse-related appointment.  

  I am used to the indignity by now; there has been plenty of traffic through that particular route over the last few years since being diagnosed with bowel cancer. Actually, the correct term is colo-rectal cancer (of the colon and/or arsepipe – mine was on the cusp). 

Even with that tumour removed, I am in no sense back to normal in the arse department.  It’s a funny/not funny health condition. As my ex-mother-in-law quipped, it’s necessary to go through such indignities if my doctors are to get to the bottom of things.  (Ba-dum chshshhh…)  I’m often the butt of her jokes (Wa-wa-wa-waaaaa…) They actually tried to get to the bottom of things in 3 different ways, including sending little electric shocks up there, which I couldn’t feel… which might be a clue to what the actual problem is.  You see? No dignity left.  None.  I’m blogging about my rectum.  I bet they won’t want to print this one in Families Magazine. 

 So, anyway, before all that, I spent a couple of very relaxing weeks at my mum’s.  I love recovering there, it’s a bit like being on holiday, only better because I don’t have to do a thing.  We watched the news, snoozed a bit, drank endless cups of tea, indulged in those sleepy late afternoon gardening/heirloom mending programmes, followed by the quizzes. I listened to audiobooks while Mum cooked and did laundry and the washing-up.  Then we’d choose our evening viewing from the TV mag (how quaint!) and settle down to watch something murder-related (my choice, not Mum’s… don’t judge me!)  or maybe a documentary or another quiz.  She thrashed me at University Challenge 6-1.  I’m still smarting!

I’m back at my own place now, been back a couple of weeks.  It’s not quite as relaxing here.  I had thought I could rest during the day while my kids were at school, and I did so, for a few days.  But then Boo was sent home from school to self-isolate for 14 days as 2 people in her classes at school had tested positive for Covid 19.  A few days later she developed a cold but no Covid symptoms, and then a couple of days after that, she started with a bad cough and was hot to the touch. Ugh.  We got her booked in for a swab test the same morning and now await the results.  Unfortunately, we must all now self-isolate PROPERLY, meaning DO NOT LEAVE THE HOUSE.  Today is Day 2, and I feel so frustrated and bored!  Mum points out that she did it for 3 months in the Spring and survived.  I’m not sure whether the fact that I’m trapped in my house with 3 teenagers rather than all alone makes my plight worse or better.  Just for a moment I wished I was married, not to anyone in particular, just an adult my own age for company and to share the litter-picking.  Why can teenagers not use bins?  

 Boo seems a little better today, but still coughing the kind of cough which makes me want to fumigate her room. Her entire year group at school have been sent home due to more positive cases, so I am bracing myself for a positive result.  Poor Boo.  Thankfully these days she will take a couple of paracetamol, and blow her own nose.  But the sensory disruption of a runny and blocked nose appears to drive her crackers; she’s got through 2 boxes of tissues in as many days and half a pot of Vaseline for her sore nose.

 I have an oncology appointment next week, which, depending on Boo’s test result, I may not be able to go to.  Assuming she tests negative and I get to the appointment, I will find out what the plan is for my chemotherapy.  The doctor I spoke to at follow-up said there’s a possibility that oncology will recommend that I don’t have chemo, as the liver surgeon is confident he got all the cancer, didn’t find any more while he was in there, and the histology all looked good.  I should be pleased with that- it sounds positive, and who wants to have chemo during a pandemic?? 

The trouble is, I have been told before that they ‘got it all’ and I was given an ‘all clear’ result after my 1 year post op CT scan.  And yet, my colo-rectal cancer spread to my liver.  How could it spread if they got it all out?  When I asked how this was possible, the consultant explained to me that the cancer will have been there in my body the whole time, but would have just been too small to see on the CT at that stage.  When they said they had got it all, that meant they had taken out all they could see.  So I’m finding it hard to believe that this time will be any different.  There might still be miniscule little bits of cancer floating around in my body that no-one can detect yet, may not even be able to detect a year from now.  Having chemotherapy, to me, feels like an extra layer of protection against further spread down the line. 

I know there are no guarantees chemo will rid me of cancer forever, it puts me at a very high risk of becoming ill with infections and viruses, as it will knacker my immune system, and will undoubtedly make me feel like total shit… but it might buy me some more time.  I need much more time; I have a lot of things I want to do.

Serendipitously, Nurse Lynnie, a long time bestie and Lass, transferred to the Chemo Day Unit at the hospital just before I was re-diagnosed in August.  So if I do go down that route, I’ll be well looked after. I see many funny times ahead if that’s the case- she won’t let me go through all that without a few laughs!

But first things first, another day of self-isolating and waiting for Boo’s Covid test result.  Life just keeps on going, even when you’re poorly.  So I have to keep going too.  It’s been hard to do that over the past 24 hours; I’ve felt worried about Boo and annoyed to be stuck inside, and fed up of not being able to see my friends, same as everyone else. But the kids still need their tea, the washing still needs doing, the car insurance is about to run out.  When you are the single responsible adult in the family, the mental load can be immense sometimes. It isn’t strength that keeps me going, it’s necessity.  Thank goodness for necessity.

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. 

New Scribblings

 

It’s been 3 years since I last posted to this blog.  Life has kept me entertained, or in any event, busy.

The girls are growing up fast. Pips 16, Boo 14, Peeka 12.  They are fantastic, funny, quirky, sometimes grumpy and mean, downright savage at times!  But mostly they are brilliant, intelligent, wise and beautiful young people.  Having become used to being a predominantly single woman and predominantly single parent for the past 5 years, with the girls’ dad 200 miles away and very quickly with someone else, I have settled into a different kind of motherhood, letting go of any hope that I will ever be perfect at this job; not even trying to be be perfect, and being ok with that.  It’s very freeing, but my house is even messier.  I don’t care unless people are coming over (excluding my close people, most of whom don’t care either.)

There have been both significant and insignificant other men in my life since the separation, but I’ve not been ready for anything so serious as meeting their parents or moving in together- I feel I have enough on with the life I already have, and I know my girls would struggle with sharing their home.  Let’s be honest – I would struggle with sharing our home.  It’s a struggle to share it with my own kids, frequently!  But I have gained a couple of male friends whose company I really treasure.  And even the Ex, for all his infuriating faults, is still a friend of sorts. 

My friends are awesome.  The Lasses -firm friends since Sixth Form- are hilarious and real.  I love these women.  Months, years can go by and they don’t change any of the things I love about them, but their spirits evolve into shapes and stories I find even more interesting and complex and side-splittingly funny.  In fact, all my friends are real and funny and wise, and nothing like me and just like me, and nothing like each other, but somehow all kind of cut from the same cloth, in different colours and patterns.   I feel really blessed that I have any friends, frankly, since I’d much rather hole up on my own, never encountering another soul, given the chance.  I’m an antisocial sod.  Except when I feel like being sociable, then I can do it for a bit, and have the best time! But I'm easily peopled-out, and then I have to retreat to the sanctuary of my loner-lair.

My parents are precious to me.  My mum and dad have seen me through some horrible times.  Dad with his easy, calm nature has been a rock, always there when I need him and also a big help in the garden and with DIY.  Mum… more of a lifeboat than a rock; riding the boiling seas with me, going with me through everything I have gone through, but feeling worse, I suspect.  Because while I was being floaty and positive and choosing not to deal with things sometimes, she took it all on; the worry, the stress, the terrible what-ifs.

Even though, usually, I feel fine and strong and vital, energised by the simple joys of life, my health has been a bit shit. There was the whole bowel cancer thing a couple of years ago; I might write more about it sometime.  But in a nutshell: the late diagnosis, the emergency stoma surgery, chemo-radiotherapy, premature menopause, more major surgery, infections (then doing a counselling placement, a load of coursework and finally completing my Counselling Diploma!), then a stoma reversal surgery which has left me with LARS, Lower Anterior Resection Syndrome – meaning I often shit myself with no warning, so I have to wear nappies – sexy. 

We moved house nearly 2 weeks ago, back into what was the family home once upon a time.  It had been mostly unlived-in for 5 years and was in a sad and sorry state.  One year, a very generous financial gift from the ex-in-laws, and a LOT of hard work later, and it’s looking like a home again.  A new home, for us now. We all have our own bedrooms now and there is a lot more space.  It’s so much easier to relax when you don’t have to share the one quiet place in the house with 2 washing racks, a computer and a huge box of mail to be sorted and filed.  I got the loft converted and now I have my dream bedroom, looking over the trees and houses.  I’ve been waking up feeling very smug and happy.

But, as I said to a friend recently, life doesn’t let you be smug for long.   I found out last week that my cancer has returned, in my liver this time.  I’ve scared myself silly by Googling survival statistics for secondary liver cancer.  But my doctors are being very positive about removing the 8cm tumour and blasting any leftover bits with chemo.  So I’m feeling hopeful that they can sort me out.

Faced with my own mortality in a way that didn’t really register last time, I’ve decided to write about my life again, just in case there is less of it left than I hoped for.  Sometimes I might feel profound  and inspired.  Sometimes I might just want to indulge myself.  And sometimes I might want to share a picture of my tea, review some cheese, or complain.  Maybe I won’t feel like writing again.  I don’t know.

Yesterday I did some gardening at my new house with my mum. Mum trimmed and lopped and I hacked, chopped and battered.  Then we sat in the shade of (half) an oak tree and watched the birds flitting around; it was very peaceful.

These are my legs and my wellies.  Enjoy.

 

Annual Review - Some Tips...

Last month we had our Annual Review of Boo's Statement of SEN.  I was dreading it, to be honest, but it turned out to be a very valuable meeting for all who attended.  I've been thinking about the things we did this year that made it a useful, meaningful experience, rather than a box-ticking paper exercise.  How did we really make our meeting work for Boo this year?  This is what we did; it might work for you too.

1.  Find out in advance who will be attending the review meeting.  Boo's support assistant wasn't initially asked to attend our review.  I felt that, as the person assigned the task of carrying out much of Boo's IEP, that it was essential she was at the meeting.  I requested that she be there, and both she and I were very pleased she was able to contribute her views and hear ours.  Ask for the people you want to be there, giving plenty of notice so school can arrange cover if necessary.

2.  Write a list of grumbles and complaints. What has not worked well for us since the last review?  What have we been less than happy with?  (Ideally these things will have been brought up with school as and when they became apparent, if you have good home-school communication, but if any concerns are still unaired or worse, ongoing, then they should be addressed at this review.)

3.  Now write a happy list! What has been going well for us?  What have we liked or found helpful?  It's important to acknowledge the (hopefully!) successful stuff.  It's only fair, right and proper to give credit where credit is due!  And a little positivity can go a long way, helping to strengthen the home-school relationship and acting as a counter balance to any grumbles you may have.  We Special Needs parents often need to be pushy, I know, but we are more easily forgiven for that if we also show our appreciation.

4.  Ask your child to add to these lists, if possible.  What have they liked and disliked about school this year?  Liked and disliked about their support this year? What have they found tricky?  Have they had enough help with the tricky things?  Do they need help with anything else?  Is anything bothering them about school?  What changes, if any, would they like to make to their life at school?  You could get them to draw a picture or do a short piece of writing if appropriate - whatever you think may get their views across.  I tried to make a little video of the conversation I had with Boo around the above questions, but didn't use it because she got stressed out and couldn't answer (not knowing the 'right' answers, bless her!) So for me, trying to gather her views wasn't very successful, but I felt it was important to at least provide the opportunity for her to have a say in the process.

5.  Carefully read through the existing Statement (or EHC plan if you have already changed over).  Cross out any parts that no longer apply to your child, perhaps where significant progress has been made.  (Make a note of any progress on your happy list!) Highlight the elements of the Statement/EHC which are most important to you and your child.

6.  Add anything new that your child may need support with, not already in the Statement/EHC.  Our kids grow and change and their needs don't necessarily all stay the same, although some may do.  Over the years Boo's made great progress and we have been able to cross out many of the objectives in her original Statement.  However, as she grows and matures, there are other issues that crop up, and it's important that these are acknowledged.

7.  Enlist an Annual Review Buddy.  I found it really helpful to have an extra brain on Team Boo, to prompt, to take notes, ask any questions I might have forgotten about, to clarify things, and just for moral support.  It's easy for some of us to get beaten down by the majority when decisions have to be made (there were 3 staff members at our meeting), and it really helps me to stand my ground if I have some back-up.  Brief your buddy prior to the meeting on all of the points you want to cover (2-6 above); if possible give them a copy, so they can cross things off for you.  I took Boo's dad with me, because he's a rottweiler when it comes to getting his own way.  Not a great quality in a marriage, but very useful in a meeting like this.  

8.  Attend the review meeting armed with your lists of positives and negatives, your notes or annotated Statement/EHC, copies of any reports you have from agencies outside school (eg. Occupational Therapy) and your Annual Review Buddy!  Stay calm and listen first. Let the SENCo drive the meeting, but chip in often in order to get all of your points across.  I think even if you have a lot of negatives to bring up, it won't do you any favours to steam in with a tirade of dissatisfaction!  Your views are more likely to be heard and carefully considered if you deliver them calmly, in a way which demonstrates that you have your child's best interests at heart.  We want to get everyone on board with us, working towards the goals that we think are the most important for our child.  What we don't want is some kind of power struggle - the child rarely benefits when school and parents are at odds.  If possible, ask questions rather than making assumptions or accusations.  Make, or ask for some suggestions as to how things could be improved going forward.  If you are told that your time has run out, then arrange to continue the meeting another time.  Keep going until everything you wish to address is addressed!  Our Annual Review lasted an hour and a half, but, with the help of my buddy, we covered all our concerns and shared all the information we wanted to share, with the people we wanted to share it with.  Result!

I hope this is helpful to other parents out there with an Annual Review coming up.  Please feel free to share with anyone who might find it useful! :-)

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.