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…

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H and I taking our first steps into his new school on his first day.
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.

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Harry says… (The Sentence Starters Edition)

Harry says… (The Sentence Starters Edition)

There’s nothing more exciting than when your child just completely out-of-the-blue surprises you.  I think that for many of us who, for various reasons, are very closely involved with our kids in the steps to each new milestone, it probably doesn’t happen all that often. Through no fault of theirs mind you. If left to their own devices for long enough, I’m sure they’d shock the living daylights out of us on a fairly regular basis. Preferably not in the oh-why-are-my-shoes-being-used-as-mud-pie-toppers but more along the lines of oh-you-drew-this-beautiful-card-for-mummy?!

I had a very AAC-mum-nearly-falling-off-her-feet moment a little while ago… Harry is in the lounge playing, his talker is somewhere nearby on the floor with him and I hear this…

H: Can I please have something to drink?

Now for those of you unfamiliar with how Harry communicates, he mostly uses single words to get his point across and is very effective, as you can read in these Harry says… posts here and here. We’re trying to encourage him to combine words more regularly to make increasingly complex phrases and we’re getting there… But on the whole, it’s one word at a time.

So, with that in mind, you can just imagine the excitement and confusion going through my mind when he busted out the little gem of a question above. Of course I was totally cool about it. I sauntered over with his drink, told him what great manners he had and then, as he shuffled off to keep playing, I pounced on his talker.

How on earth did he put that beautiful little sentence together?

This was a few months ago and so we were still learning our way around his communication app. Mostly we were sticking to words in the familiar category folders that are also in his PODD communication book which he’s been using for a couple of years now. I went in and out of folders trying to replicate his request when I saw, top left of the screen, the pink ‘Sentence Starters’ folder. Aha!

There they were, all these clever little, well, sentence starters. So if you select ‘Can I please have’, another screen pops open where you can select from all sorts of things. And this is where Harry finished off his sentence with ‘something to drink’.

Smart, smart cookie. The thing that really excited me about all of this was not that he was talking in full sentences as my aim is still to teach him all those individual words so he can construct absolutely any sentence that may spring to mind rather than only choosing from a few options. No, the really exciting thing was that he had figured out how to say that sentence ALL ON HIS OWN.

No modelling from me.

No expectations from me waiting, waiting, waiting to see if he would mimic what I had modelled.

Nope, this was all Harry.

And it made me think about how cautious I must be with ever thinking ‘oh, he’s just babbling’ when he’s in his own little world with his talker and saying all sorts of seemingly wacky things (as I know from Harry says…amusement park). I started thinking about T, H’s 18 month old sister, and how all sorts of babbly vocal delights fall from her lips, most of which mean nothing to me. But never is she ignored. We all nod and smile and say “yes, that is a big, yellow truck”, “oh, you want to put your shoes on” without ever thinking that she’s ‘just babbling’ and leaving her to it.

T listens to us speaking and experiments with her voice.

H listens to us speaking and experiments with HIS voice.

Of course modelling is still our most most most (that’s 3 times for emphasis just in case anyone thought I’d gone loopy and was planning on leaving H to figure out the rest on his own!) important tool in helping him learn to navigate through his talker but, for H, I also see the great benefit of allowing him to play with his voice. T plays with hers. She’s currently experimenting with rolling L’s around her mouth and trying out different vowel sounds after each successful L attempt and Harry is experimenting with quick ways to construct sentences:

H📱: I need help – to visit – Gogo

H📱: Can I please have – something to eat

H📱: I’d like – to go to the toilet

H📱:It’s time – to drive

It must also be wonderful for him to hear those perfectly constructed sentences said with his voice, especially when he’s often greeted with a great response when he shocks newbies with his phrases. Nothing like a bit of praise to spur him on!

And while he explores and experiments, I will do my best to give him the support he needs to guide him along and the space he needs to know that he can also do it all on his own.

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Chat

Harry says… (amusement park)

H is chatting with his speechie on his talker when he points to his play iPad, I (being the dutiful therapy mum that I think I should be) tell him that he can play on it later. A few minutes later he gestures toward it again and his speechie hands it to him, looking interested and asking what he would like to show her.

It looks like he had been watching an episode of Little Ted’s Big Adventure on it before and he presses play to start it up again. “Little Ted is at the amusement park” says the Playschool announcer…

Me: Oooooooooooh riiiiiiiiggghhhht *face palm*

H☝️📢: Excitedly squealing and pointing to his iPad to ensure that he has the full attention if his speechie and I.

Me: (to speechie) Soooo Harry has been saying ‘amusement park’ with his talker on and off all day and I have only just realised what he was trying to share with me! (to Harry) Harry, were you trying to tell mum about Little Ted at the amusement park?

H☝️📢: Clearly nods and continues to squeal happily and point to the Little Ted video playing on hid iPad

Me: Oh, silly mum!

H☝️📢: Giggles and nods in agreement and I’m sure I saw a big look of relief on his face too – finally his mum had figured it out!

His speechie took this opportunity to show Harry how he could expand on ‘amusement park’ to say on his talker 📱 “Little Ted – go – amusement park’ to help his silly mum! And the rest of the session continued (with the ongoing involvement of Little Ted, Big Ted, Humpty and the rest of the gang)…

And I was left thinking about a few things:

  1. Never assume anything that Harry says is random. Hearing Harry say ‘amusement park’ at lunch and in the car seemed fairly arbitrary, but quite clearly it wasn’t.
  2. It’s so important for him to have the opportunity to explore his device. I don’t remember having ever modelled ‘amusement park’ to him, but he knew exactly where to find it on his talker and, thanks to Little Ted, probably has a pretty decent idea of what it is too.
  3. Don’t under estimate the educational power of a small fluffy toy bear going on a ‘big adventure’

Amusement Park.

Have PODD, will chat. Part 2

Have PODD, will chat. Part 2

In ‘Have PODD, will chat. Part 1’, I discussed how before we could get started with modelling on the PODD or have any expectations of Harry even using it we first had to get into the habit of taking his voice everywhere. Not quite as simple as it sounds, but once the habit was formed, we were hooked. Don’t get me wrong, there is still the odd occasion when we find ourselves somewhere without Harry’s voice (even just writing that makes me feel bad) but Harry has developed a brilliant strategy to ensure that those mistakes are minimal.

When Harry’s PODD communication book first arrived, we were given a few brightly-coloured rubber wrist bands printed with the following words ‘I have something to say! Please get my communication system.’ There were little ones for Harry and big ones for me and the aim was for both Harry and I to wear the bands and for him to learn to wave his arm that had the band on to show that he had something to say and wanted his PODD book. Very clever. The importance of using these wrist bands was not lost on me. And we did. For a while…

Harry's last remaining bright pink rubber band that has 'I have something to say' visible and printed in black on it.
Harry’s last remaining bright pink rubber band that has ‘I have something to say’ visible and printed in black on it.

The trouble was, for Harry, a brightly coloured wrist band on his arm looked to him like a big, delicious chewy. I can’t even tell you how many we went through! Unfortunately the wrist bands weren’t the solution for us at that time.

And after that, well the truth is that we just forgot about ensuing that Harry had a specific and easily recognisable way to ask for his book or device. I will comfort myself for this oversight by saying that, on the whole, Harry’s device is usually within his reach. But what about the situations when I’m not around to ensure that his book or device is just an arm’s length away? What happens then when he has something to say and no one notices him gesturing for his book or device?

Enter into the picture Harry’s little sister, Tallulah. As soon as she was over the first few months of being a quiet, sleeping newborn she was one seriously chatty little girl. Whenever she was on an especially chatty roll and Harry would point to her or perhaps give his sign for ‘noisy’, we would laugh and say ‘yes, she’s so chatty’ whilst giving a sign for chat.

Now, I have no idea if it was any kind of legitimate sign that we were using and we certainly weren’t even thinking that we were modelling that sign with any intent. It was simply a part of the sentence. It’s amazing how regularly we all punctuate our words with signs without even realising it. The sign we were making was made by holding our top 4 fingers together and opening and closing them against your thumb, like you might sign ‘quack’.

Slowly I noticed Harry making this sign at times when Tallulah wasn’t around. Hmm, that’s interesting…

And then with closer attention, I noticed that he would follow this sign by pointing to his device.

*ding* Light bulb moment!

Harry had taken our sign for describing his chatty sister and was using it to tell us that he wanted to chat! What a resourceful little sausage!

The minute we made the connection that Harry’s new ‘chat’ sign meant that he wanted his talker, our world changed. And undoubtedly so did his! We made sure that everyone knew what the sign meant and with that, Harry now had a means to demand access his talker anywhere, any time.

As soon as Harry is strapped up in his car seat… H☝️: ‘chat’

At the table, if I haven’t yet popped his talker in front of him… H☝️: ‘chat’

At childcare whilst playing with his buddies… H☝️: ‘chat’

The second he wakes up in the morning… H☝️: ‘chat’

Anywhere, any time… H☝️: ‘chat’

This simple sign represents incredible power and autonomy for Harry.

Be it a sign or a wrist band, a sound or a switch, by ensuring that Harry has a means to clearly demand access to his communication device we ensure that the ownership of Harry’s voice remains exactly where it should be. With Harry.

Have PODD, will chat. Part 1

Have PODD, will chat. Part 1

Before Harry was demanding (and I do mean demanding, not requesting) to use his talker whenever he had something to say and was initiating communication. Before his talker was a permanent part of the paraphernalia that we cart around everywhere. Before any of that, we had to instil one simple habit. Take his voice with us everywhere.

I remember receiving Harry’s first PODD communication book, I was so excited…and absolutely terrified! What is this book filled with symbols? How am I ever going to learn it? And if I’m worried that I can’t learn it, how will Harry ever learn it? We’d already had our expectations for Harry’s communication completely shattered by a rogue neuro-psychologist whilst in hospital, so my hope for real, robust communication had certainly be challenged. (If only I’d known about The Power of Yet then, but that’s a post for another time.)

The first task that we were given by H’s speechie was to carry the PODD book around everywhere for the first couple of weeks and not to pressure ourselves into using it. Just get into the habit of taking it everywhere with you, she said. It was an A4 sized book with a big spiral binder and at least half an inch thick, so it was a sizeable piece of kit. But it was so much more than just a chunky spiral bound book.

Harry's firs PODD Communication Book showing 20 symbols on the front page and a plastic dinosaur toy for scale!
Harry’s first PODD communication book showing 20 symbols on the front page and a plastic dinosaur toy for scale!

Within its colourful symbol-filled pages lay the possibility of real communication, of Harry being able to tell us so much more than what he wants to eat or whether he wants to play with blocks or cars. It held the symbol for “I love you”! Just carry it around and don’t stress about using it, she said. Puh-lease, I was going to be a champion AAC mum and would be talking to Harry in the PODD about ALL. OF. THE. THINGS. and ALL. OF. THE. TIME!

Yep, no prizes for who was right.

Creating a habit to take something with you everywhere is not quite as simple as it may sound. Especially when it doesn’t exactly fit in your back pocket. There was a lot of this kind of chat in those initial weeks and months…

Hmm, it doesn’t’ fit in my bag. Oh okay, we’ll add a shoulder strap. (weeks pass) Good, the shoulder strap definitely helps.

I’m just popping into the shop, we’ll leave it in the car. Hmm, that would have been a good opportunity for communication, wish I had the PODD with me.

Me: Did you bring the PODD? J: No, I thought you brought it.
J: Did you bring the PODD? Me: No, I thought you brought it.

And sometimes I did have it with us, but I just didn’t feel like bringing it out. Maybe I was tired and not in the mood for modelling. Maybe I felt vulnerable and didn’t have the emotional strength that day to deal with people staring.

And you know what, looking back, that was all okay (and sometimes, even now, still is) . What mattered is that we were on the path. We had a robust communication system for Harry and we were absolutely committed to ensuring that he would be able to communicate to anyone about anything, anywhere, any time.

This time, we just had to give ourselves a chance.

Life Caveats

Life Caveats

I have recently finished reading Ghost Boy by Martin Pistorious. (Martin developed an undiagnosed neurological condition as a child and now uses a wheelchair and communicates with a device.) It was a phenomenal read that I can sense is going to stay with me for a while. It was this article written by his wife, Joanna, about falling in love with Martin that got me thinking about the caveats we put on our lives.

Throughout Martin’s book you get a sense of his warmth and resilience, why wouldn’t someone fall in love with him? It was this passage in Joanna’s article that hooked on to my heart: “Our relationship didn’t make sense at all. We’d fallen in love over the Internet and had never actually met in person. But surprisingly, that didn’t worry the people closest to us. In fact, all they talked about was that Martin was in a wheelchair. They insisted I’d end up being his caretaker, and believed Martin would wind up getting hurt.”

Of course it’s natural to want to protect the people you love, and perhaps I’m being a tad idealistic here, but wouldn’t it be nice if we didn’t put caveats on our lives or the lives of others. I have no doubt that her friends and family were filled with the best intentions, but should being in a wheelchair or having the ability to talk with your voice be a caveat to finding love?

I can love you*

*as long as you move using your feet to walk on

I can love you*

*as long as you can say those words back to me using the voice that comes out of your mouth

What is the subtle subtext here?

We can understand your love, as long as it fits into our carefully constructed idea of ‘normal’.

We can have all the caveats we want in place but the reality is that the force of life doesn’t care what our caveats are. No matter how devoted we may be to the belief that we create our own destiny, every day we are part of events that we simply have no control over.

A while ago I watched a very interesting TEDx talk by Karni Lidell, a paralympian swimmer and motivational speaker, (you can watch it here or read about it here) where she shared her thoughts on a widely used caveat in the lead up to giving birth… “as long as it’s healthy”.

I don’t mind how I give birth*

*as long as it’s healthy

I don’t care if we have a boy or a girl*

*as long as it’s healthy

It just falls from our lips and almost certainly without much thought into what the actual words we are saying really mean. I am certain I said both of the above and more many times while I was pregnant with Harry. And I got my wish when my bursting-at-the-seams-healthy boy was born into the world at a robust 9.5 pounds. But my previous perception of the *as long as it’s healthy* caveat lasted a meagre 11 months until an event completely out of my control changed the course of all of our lives and that caveat was swiftly tossed aside. (There is no doubt an entire debate on what the term “healthy” actually even means, but that’s a discussion for another time)

These caveats, that we verbally and silently apply to our lives, I wonder what their affect is on anyone who lives outside of them? Even Karni Ridell who describes herself as having “a healthy dose of self-worth” felt affected enough by the prolific use of the caveat *as long as it’s healthy* to dedicate an entire TEDx talk to it’s use and to advocate for replacing ‘healthy’ with ‘happy’.

Most of us apply various seemingly innocuous caveats to our lives…

I will be happy*

*when I lose some weight

I will know I’m a really good mum*

*when the house is tidy / the freezer is filled with home made meals / I’ve modelled on his talker for x hours etc etc

I like you*

*as long as you are like me

But with these caveats we create an invisible roadblock to allowing ourselves to feel happy, fulfilled and loved in the here and now. How exhilarating would it be to delete all of those caveats from our lives?

And when it comes to accepting the love we have, the love we want and the love we hope for with our friends and family, let’s embrace the words of Mark Darcy in the philosophical masterpiece Bridget Jones’s Diary

“I like you very much*

*just as you are”

Black and white image of a woman with sunglasses on and a man facing into the camera and smiling at a boy who is in profile.
Black and white image of a woman with sunglasses on and a man facing into the camera and smiling at a boy who is in profile.