Word by Word

Word by Word

In ‘The Path to School’ I shared how there is no research showing that segregated education is beneficial for students with or without disabilities and that it is in an inclusive setting where the majority of students thrive.

And I believe it. We’ve sent Harry to our local mainstream primary school and I am certain that it is the right place for him. But deep, deep down in places that I’m sure many special needs parents have tucked away, there is a tiny flicker of fear and doubt. It is the doubt created by decades of expected segregation. It is the unspoken fear in our minds that silently whispers that our kids are welcome, but perhaps not as welcome as others.

Yesterday H and I arrived a bit early for school and, as we sat outside his classroom waiting, he indicated that he would like his readers*. H has shown wonderful interest in them and, whilst he can’t fully read them yet, they’ve certainly been wonderful literacy motivators.

I got them out, he chose one to read and as we were about to start, one of his friends came over.
“Let’s read it together, Harry”, she said. I was already holding the book up in front of Harry, who was sitting in his wheelchair, and I kept it there so that they could both see it.
He then reached across and grasped her pointer finger and started pointing to each word. As he pointed, she read. 
Word by word, he held her finger to point to each word and she read the word. 
Word by word, he had another opportunity to immerse himself in written words, hear how they sound and look and understand how they’re constructed to form sentences and a story. 
Word by word, she received another opportunity to practice her reading and advance her strategies for dealing with the tricky words that she stumbled on.
Word by word, they helped each other to further their individual literacy skills, together.

The school bell rang and Harry, being the good little school boy that he is, insisted on going straight into class.
And as I walked away I knew that, in those few minutes before school, I had seen a glimpse of why the research into inclusive education shows the results that it does. 
And those unspoken whispers retreated deeper and further away.


*Readers are the early learning books for kids who are just learning to read.

Faking Normal School Mum

Faking Normal School Mum

I have a confession to make, the title of this post probably gives it away, but I’ll press on nonetheless… I’ve been faking being a normal school mum.

From the moment I nonchalantly get out the car with Harry, Tallulah, wheelchair, walker, backpack, phone, keys etc etc smiling breezily like my heart isn’t going a hundred miles an hour worrying whether T is going to bolt into the car park, I’m going to drop my carefully constructed tower of paraphernalia or H is going to sob the whole way to the classroom for a reason I can’t figure out.

And to the moment when I collect H, casually chatting to the other mums hoping that they don’t pick up my desperate attempt to figure out exactly what their kids are telling them about school, friends, what they’re learning or anything really and followed by my very brief chat to H’s lovely teacher who then makes her way through the other parents and I stroll away hoping that I appear totally calm whilst my insides are churning with not knowing exactly what Harry did every single second of the day. Did they use his talker? How many times? Did he pay attention? Did they figure out how to model during drama? Who did he play with? What exactly did he do? AAAAARRRGGH!!!!

At around 1am one night, a time when all the best ideas pop up because one’s mind is so calm and peaceful (ahem), it occurs to me… I should just chat to his teacher and see if they can set up a nanny cam in the classroom so that I can see what’s going on. Actually no, better to just skype me in during the day so I can give immediate feedback if they’re struggling with ideas on helping Harry to attend or how to model best. No scrap that, why don’t I just come in. I could sit in a corner quietly, they won’t even know I’m there. It’ll be great.

Yes, 1am, when all the most clear-sighted and rational ideas are conjured up.

So who is this ‘normal school mum’ that I thought I should be especially considering that I loathe the term normal. What on earth does it even mean and who on earth could possibly represent it? I have no idea, but in my hope to try and get through the first term of mainstream school, I imagined an image of her and thought that she is who I should be.

As the weeks went by and I started chatting more and more to the school mums and dads and seeing what was going on for everyone else, the idea of a ‘normal school mum’ started to crack…

The worry about H not divulging his school day to me and assuming it was because he couldn’t tell me on his device eased. As it turns out, the standard answer to what did you do at school today is ‘nothing’, the answer to how was school today is ‘fine’ and finally the answer to who did you play with is ‘no one’. Phew.*

The pieces of ‘normal school mum’ continued to fall away as I watched my fellow school mums and dads struggling with crying kids, getting called in for playground incidents and lurking around the classroom looking to corner the teacher for insight and reassurance.

The final piece of ‘normal school mum’ disintegrated when, towards the end of term, I was chatting with a group of parents waiting to collect our kids and one of the dads said “Don’t you just wish they had a camera in the classroom so you could see what they get up to all day?” (Ha, if he only knew!) But I wasn’t alone, there was a collective sigh of relief and much hilarity as we all sheepishly confessed our agreement.

And so on the eve of the start of term 2, there are no preconceptions of how I should and shouldn’t be or what I should and shouldn’t feel. The only faking going on around here will be the filters on my pictures!

M H and T

 

 

*That phew is relief that when he gets home and doesn’t feel like talking to me that it’s all fairly typical. I will still try to help him along by giving him the words he might need to tell me what happened, for when he is in the mood to chat, or to tell me to ‘go away’ as the case may be!

Chat

Harry says… (shop food)

With the number of food related ‘Harry says’ blog posts it really shouldn’t come as any surprise to me that he really is my child when it comes to meals. I am the type of person who will enthusiastically be discussing dinner plans whilst still making my way through my morning oats.

And a trip to the zoo with all the exciting sights, sounds and smells certainly didn’t shift Harry’s focus off where and when the next meal would be. It didn’t shift mine either mind you, I just manage to (occasionally) keep it under wraps.

Whilst discussing over dinner the night before what animals we were excited to see at the zoo, Harry told us he was excited about…

H: picnic area

The zoo does have a rather pretty picnic area, so I’m with him on that one.

Once we were at thew zoo and had ticked off the big guys – hippopotamus, giraffe and lion – H was quick to remind us…

H: shop food

Ha! This guy has a memory like an elephant!

I was also internally high-fiving about his nice little combination of the words ‘shop’ and ‘food’. H is excellent at getting his point across with only single words, so it’s always a great thrill to see him creating more specific messages.

Later, as a treat from granddad, T and H each got to choose a pressie from the zoo shop. T’s search was quickly over as she bolted toward the back of the shop with the words “PINK MONKEEEEEY” drawing my attention to a lurid, does-not-exist-in-nature pink sloth. Fabulous. It’s name is “Girl” FYI.

And H once again thrilled us with his wonderfully specific two-worded message…

H: buy hyena

…whilst grabbing an African Wild Dog.

And home we traipsed, our hearts filled with a day together, our tummies filled with snacks in the picnic area and our arms filled with exhausted children, a hot pink monkey and a fuzzy-eared hyena.

We’ll leave the animal-naming lessons to another day…

H and T Zoo

Chat

Harry says… (Tallulah school)

As you might have gathered, H is pretty stoked about the whole school situation. He loves his uniform, his teacher, his class, going to school and even doing his homework (long may it last).With school being just around the corner from home it does also mean that we drive past it a lot, even when we’re not going to school which can lead to some problems…

Whilst figuring out the school and child care drop off scenario, we decided to try dropping T off at childcare first and then heading back to school with H as it would be more time efficient. However, in hindsight we didn’t take the time to explain to H what we were doing the first time we switched up the routine.

We jumped in the car and drove past H’s beloved school to take T to childcare. Let’s just say it it did NOT go down well. And fair enough, poor H was not part of our planning and all he saw was us zooming past his school and him still stuck in the wretched car.

Over the next couple of days we made sure that we chatted it through properly with him and explained that he would still be going to school after we dropped off T. This was all supported by lots of modelling on his talker to ensure he had a good understanding and could chat about it if he wished.

A few days later, same drop off scenario and no complaints from H. Phew, my explanations were obviously enough I thought, what a relief.

We arrived at school and I opened the door to get H out and there it was, the rather smart coping mechanism that had helped him get through it…

H📱: Tallulah school Tallulah school

He had utilised self-talk (AAC style) to keep himself calm and reassure himself of what was happening. We all use self-talk in lots of different ways don’t we? In front of the mirror before a presentation to calm ourselves, lying in bed to motivate ourselves to get out and get that gym gear on or, in the case of a 5 year old school-loving boy, in the back of the car to reassure himself of the morning’s routine.

The Path to School

The Path to School

I can’t believe that we’re already 3 weeks into school, that’s a third of his first term of his first year at school completed already – amazing! The journey to school has been a long one for us, as for most parents of a child with a disability, because the path isn’t always as clear as it should be.

The week before H’s accident, 5 years ago last Friday, we put down a deposit on a house. It was our first house and J and I were over the moon. One of the reasons we also loved the house was because of the local primary school which we had heard so many wonderful things about. This was our house and that would be H’s school. Done.

Until it’s not done. Until you suddenly find yourself on the ‘special’ road assuming and sometimes being told that you should go to ‘special’ places. You know, special kindy then special school on the special bus etc etc. As a new parent, you have no idea what you’re doing really and particularly as a new parent who went to school a LONG time ago when there was certainly not even a whiff of inclusion at school. Our assumptions are based on our experiences and those experiences can tell you that the ‘special’ path is the only path available to your child.

But along the way some of us are lucky enough to meet people who question and challenge those assumptions – why should he go to special school? Is that really the best path for him? Who’s going to benefit from him going to special school? Not him. And not his peers. Isn’t it interesting that not a single research article exists showing that segregated education has better outcomes for children with or without disabilities. NOT ONE.

I first became aware of that very interesting and path-changing fact when I went to a seminar by Dr Bob Jackson. In his article, “Why should schools include children with a disability” he talks about the outcomes of an inclusive education for kids with and without disabilities, teachers and the whole school community. I highly recommend a quick read of it. It’s belief changing stuff.

And so here we are. 5 years later and back where we started. The house is now our home and the school that we thought was no longer for us is where we drop H off every week day morning. And over the past 3 weeks, here are a few things that have reassured me of our decision…

We were playing out the front when a young girl in H’s class and her dad walked across the road to say hi because they live in the house opposite ours.

I had my offer of creating a letter for the kids to explain all of H’s equipment politely turned down because the kids aren’t really fussed by any of it.

I did write a letter to the parents, however, and have felt only support. Some have approached me in person, some via Facebook and some through this blog. Not one has questioned H being at school with their kids.

I have felt included.

I didn’t realise that including H in his local school moves far beyond him being in a classroom with his peers. It has ensured that our family is part of this community too. This is our neighbourhood and ALL of our kids go to school together and bump into each other playing outside, at the shops or on the street. Just as they should.

It’s still early days and I’m certainly under no illusion that it’s all going to be smooth sailing. We’ve had a few hiccups (a toilet seat arrived two weeks late and was in fact a chair. Yes, just a chair. To sit in), I’ve been more tired these past few weeks than ever before (compounded by an excellent bout of croup for T), but H is happy and I feel certain that he is exactly where he needs to be.

The look of pride when he puts on his school uniform and the beams of happiness as he high fives his buddies on his way to the car at the end of the day are all I need to keep going. (Well, that and a steady stream of double shot lattes!)

We may only be a few steps in, but I feel they are the right steps on the right path…

img_8096
H and I taking our first steps into his new school on his first day.
Give Santa a Chance

Give Santa a Chance

This week we had our obligatory Santa visit and, probably like most visits to Santa where it’s all new and strange and exciting and overwhelming, it wasn’t totally what I expected.

And I say ‘obligatory’ like it’s no big deal, but really it is! Visiting Santa always felt a bit out of reach – the noise, the crowds – we put it off until we finally heard about Sensory Santa for the first time last year. Sensory Santa is an opportunity provided by shopping centres with a Santa set up, where they open the centre early when it’s still quiet and provide 10 minute allocated time slots for a child and their family to visit with Santa. This is a game changer for kids who, for various reasons, wouldn’t be able to handle the noise, stress and chaos that can come with visiting Santa during regular hours.

I booked us in for our visit and began the Santa chats with H so that I could pre-programme his talker to make it quick and easy for him to talk with Santa. Last year he asked for a basketball hoop and luckily Santa was listening, I wondered what it would be this year…

H📱: Mrs E (his school teacher for next year)

Right, so he pretty much he wants to go to school for Christmas! We chatted more, I modelled a bit and H agreed that a school uniform is what he wants (well, isn’t that convenient as I believe that Santa is all over that request).

I programmed his talker, we all hopped in the car and off we went to meet Santa…

It was magical – all shiny red presents and sparkling white Christmas trees. H’s face at seeing Santa was once again filled with wonder and excitement. He squealed with delight as he saw the big guy in red. He pointed to the presents, to the trees, to Santa. I modelled some words on his talker…

I then tried to prompt him to say the messages that we had prepared for Santa – he looked at his talker, then back to Santa and chose not to say anything with his talker.

Instead he chose to use his voice to express his excitement and pointed to all the fantastic Christmasy things to communicate his message.

We had our family photo, H’s face is the absolute portrait of a thrilled 5 year old boy, whilst T’s is that of a suspicious 2 year old. It’s a pretty amusing shot!

H chose not to use his talker once whilst we were there. In fact, T also barely managed to say a word to Santa even though there was plenty of prompting from us too.

But the interesting thing is that I felt much more aware of H not using his talker than of T not using her voice. As parents, I think we can put so much pressure on our expectations and hopes for how certain encounters might go for our children. It comes from a good place as we want the best for them, but the reality is that it’s not about us.

This was H’s visit to Santa, it wasn’t about whether I think he should use his talker (or not as the case may be). This is about a young boy having a chance. Our job is to give him that chance…

We will give him the chance to always have easy access to his talker – it’s his choice whether he chooses to use it or not at any given moment

We will keep modelling words and using his talker – it’s his choice to use those words when the time is right for him

We will give him the chance to use a wide range of communication tools – it’s his choice to use his voice, his talker or his signs and gestures

We gave him the chance to see Santa – and he absolutely LOVED it!

A Portrait of Inclusion

A Portrait of Inclusion

Last night we went to Harry’s end of year kindy concert (kindy or kindergarten is pre-school for all the non-Aussies). As we close the chapter on our kindy year and get ready to start at big school next year, I reflected on our first year in the education system.

Whilst this year has had its challenges, not once have we had to advocate for our son to be an included and valued member of his kindy. Not once.

Inclusion has been a given.

Inclusion looks like a young boy standing at the back of his kindy class photo because, as one of the tallest in his class, that is where he should be. On careful inspection, the trained eye of his mother can see the kindy director standing close behind him to support him as he stands.

Included.

Inclusion sounds like the glorious cacophony created by 4 and 5 year old voices at their end of year kindy concert followed by a well rehearsed silence. When out of the silence comes the next line of the song spoken by a young boy using his talker, then quickly enveloped again by the enthusiastic singing of his peers. In reality the silence was inevitably not as quiet as I am sure had been practised, but it made his mother’s eyes prick then and again now knowing that his voice was heard and valued.

Included.

Inclusion is a young boy telling the artist who is drawing his portrait to put basketballs on his top because, whilst the young boy may not have the dexterity yet to draw a self-portrait, he can still have his say to ensure it represents him. And he can then paint it with all the colours of joy and enthusiasm that shine through him onto his beautiful self-portrait to be hung up alongside all the other self-portraits of his kindy class.

Included.

These may be only a few examples and we may be only a year into our education journey, but I can’t help but wonder…

If Harry continues to be surrounded by people for whom inclusion is a given, who don’t expect anyone to advocate for it because it’s just what they do, imagine how much we could all learn and grow along the way – his peers, his school, his family, his community and most importantly him, Harry.

portrait