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!

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.
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.

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Curious Kids and The Talker

Curious Kids and The Talker

iPads are the Pied Pipers of the 21st century. Kids can sniff them out from a mile away. The minute a child switches off that home button and decides they want a break from their iPad, another 10 pairs of little hands magically appear ready to click and swipe their way through your array of apps. And that is great because as I mentioned in this post about choosing Harry’s device, we wanted H’s talker to be an iPad because of it’s ‘mainstream’ accessibility and understanding by all. But that also means we have to be prepared to handle the magnetic pull of children wanting to play with Harry’s talker.

Last weekend we were out with a few friends and their kids who, whilst I wasn’t paying attention and Harry had moved away from his talker, explored Harry’s communication app. They managed to navigate through to an editing page and one of the older kids called me over as he was worried they would break something. It wasn’t a big deal as we have locks in place so it’s pretty hard for someone to unintentionally edit anything, but I told them that the iPad his Harry’s voice so it’s best for them not to touch it. I could see the look of concern on their faces like they had done something wrong and off they disappeared, away from Harry’s voice.

Hmmm the whole point of choosing an iPad, and in fact the point of any communication system regardless of the hardware, is to ensure that the AAC user is included. And yet I had unintentionally managed to achieve the complete opposite.

In a wonderful talk I went to last year (part of this AAC User Lecture Series) given by an incredibly competent 5 year old AAC user, he advised parents not to let other people touch your child’s device because it is their voice. It’s excellent advice and was an important insight for me to see the talker from Harry’s perspective. But I had taken this advice far too literally and not thought through strategies for allowing kids to see and understand Harry’s device and to also include Harry in that process.

Yesterday we had the opportunity to test out a new approach. Our new neighbour and her 4 year old son (let’s call him Tom) came over for a visit and again, when Harry had moved away from his talker, Tom came over to the talker and started to explore. His mum looked a bit worried, but instead of me telling Tom not to play with it I asked him if he wanted me to show him how it worked. He nodded eagerly. “Harry,” I said, “do you mind if I show Tom how your talker works? You can also come over and show him if you’d like to.” Harry gave  me a quick nod of approval and carried on playing where he was. I started to show a very engaged Tom the talker and, with the Pied Piper in action, Harry quickly shuffled over to where we were. “You can also show Tom your talker if you’d  like to Harry”, I said. Harry reached over to his talker and navigated to the ‘People’ category and said:

H📱: neighbour

Tom and his mum smiled whilst Harry pointed to Tom and I was doing internal high 5’s!

Tom had been given the opportunity to better understand H’s talker that he’s naturally very curious about, H had the opportunity to show Tom himself how he uses it rather than me managing the whole situation but also, H wasn’t under any pressure to ‘perform’ on his talker. To me, this is important, as I don’t want H to feel he has to use his talker if he doesn’t have something to say. We don’t tell verbal kids to ‘say orange, say truck’, so I don’t want to tell H to ‘show us where ball is’ or demand that he uses his talker.

As advised by that clever 5 year old AAC user, I did still tell Tom that the talker is Harry’s voice and not something to play with, but only after he’d had the chance to see the talker in action and to better understand that it is Harry’s voice. His curiosity had been rewarded, not reprimanded.

Now to set up another time to catch up with the kids from last weekend to try out my new approach!

Picture shows Harry's talker from the top with his hand open across it and another person's finger on it.
Picture shows Harry’s talker from the top with his hand open across it and another person’s finger on it.
Tears and Dancing at AGOSCI

Tears and Dancing at AGOSCI

On day 2 (click here to read my overview of day 1) of the AGOSCI Conference the tears started before Gayle Porter even began her opening keynote speech. For anyone not familiar with  AAC, in 2007, Gayle released the PODD communication system which completely revolutionised AAC. PODD communication books and now the PODD pageset on the Compass app have given thousands of people around the world a voice, including my Harry. Not surprising then that the speech therapist introducing Gayle could barely make it through her introduction without getting choked up.

In her keynote, Gayle posed the question about an AAC user’s system: ‘Will I take it to a party?’ Not can I take it, but WILL I take it. She spoke about the importance of long term intervention, of training communication partners and the critical role that parents, friends and family play in ensuring that AAC users value their systems. 

She also addressed how often it’s only the ‘now’ that is on display.  We see videos of wonderfully competent AAC users, but what we don’t see is the years and years of hard work, continuous modelling and remaining hopeful, even when you’re running on empty, to ensure that one day your child will be able to communicate. The hope that one day, these years of modeling will pay off and your child will finally be able to share their thoughts with you. The tears in the hall fell freely from parents, therapists, teachers and even from Gayle.

Later that morning, a young speech therapist bravely shared her mistaken assumption of a client when she was a first year speechie.  With tears streaming down her face, she reflected on how grateful she was to have learnt so early on to never presume anything but competence. And later in the day the tears flowed again from a teacher and speech pathologist who shared the amazing positive transformation in behaviour in a group of pupils with autism after the introduction of a literacy program.

The tears were punctuated by the AGOSCI Conference Dinner. I quickly learned that there is no hanging around the edges of an AGOSCI Conference Dinner dance floor.  Within seconds of finishing your last mouthful of food, the dance floor is heaving and it was the most honest representation of society that I have ever seen. We were dancing using our arms, legs and wheelchairs.  We were chatting using our voices, AAC devices and sign. Our ages ranged from 7 to 70 and no one judged, no one was excluded and everyone danced with a happy abandon that can only be the result of being in a truly inclusive environment (and possibly a few glasses of wine, ahem). I felt the prick of tears sting my eyes as I considered that this was just one dance floor in one place. What about all the other dance floors? And whilst I am sure that there are dance floors like this dotted all over the world, I felt a renewed determination to advocate, plan and hope for the type of world that I want my children to grow up in.

This conference has taught me so much more than I could possibly have imagined. From the expertise and knowledge of the speakers, I am committed to ensuring that literacy is a key part of Harry’s learning.  From the honesty and dedication of AAC users and their families, I am hopeful for a bright, challenging and fulfilled life for Harry. And from the tears, passion, accountability and awesome dance moves of everyone who attended, I know that Harry’s future will be a disco-lit dance floor of inclusion!

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A Mum at AGOSCI – Day 1

A Mum at AGOSCI – Day 1

Inspired. Amazed. Intrigued. Excited. EXHAUSTED.

And that’s just a bit of what I’m feeling after day 1 at the 2015 AGOSCI Conference.  AGOSCI describes itself as an inclusive group interested in enhancing the participation of all people with complex communication needs. Their vision is for people with complex communication needs to participate fully in all aspects of life. No surprise then that I, as the mum of an AAC user, am a fan! AGOSCI members are speech pathologists, support workers, teachers, aides, AAC users, parents and more.

The top 4 messages that I felt were repeated to me throughout the day were:

  • ALWAYS presume competence
  • AAC users need access to robust communication systems all the time
  • Communication partners are vital to success
  • Model model model

Now, to those of us actively supporting our children or clients and believing in them and their potential to be autonomous communicators, this may seem pretty obvious. But, unfortunately we aren’t (yet) the norm.  There are so many children and adults out there who do not have access to comprehensive communication systems.

We were almost one of those families, but luckily we were introduced to a wonderful speechie who chose to presume competence and model the PODD without any expectations from H to prove that he was ready for it.  But that’s a post for another time.

Karen Erickson, in her opening keynote address, made an incredibly inspiring and passionate speech about the importance of literacy in AAC. It was inspiring enough to earn her the hashtag #KarenEricksonRocks on Twitter! As she explained, AAC is much broader than just a voice output device. It is all of the aided and unaided modes that people use to communicate. Thinking about Harry, that is so true and is what I am celebrating in the Harry says… posts. H uses his voice, key word sign, gesture, facial expressions, a PODD book and an iPad to communicate with us. But in order for him to say precisely what he wants to say, he needs to be literate.

As Karen said, an AAC user can learn hundreds of symbols in their communication system, so 26 uppercase letters should be pretty easy. Goosebumps.

In Jane Farrall’s session, AAC: Systemic Change for Individual Success, she stated the importance of providing every individual with complex communication needs with a communication system that enables their right to communicate.  Yes, their RIGHT to communicate. Further to that, she spoke about the pivotal role that parents and all communication partners play in the success of an AAC user. Parents that instinctively know the principle of the least dangerous assumption and presume competence whilst making sure that communication is ‘all day every day’ will see the most success.

And that was certainly on display in the lecture from a wonderfully devoted mum who, after attending a previous AGOSCI conference, decided to challenge the presumption from teachers that her daughter was illiterate and take matters into her own hands.  After the introduction of a robust communication system and by incorporating literacy into her AAC, she is an excellent communicator with ever-improving literacy.  And I saw how well all their hard work had paid off, as I had the privilege to chat with her briefly.

Jane also spoke of the importance of learning from AAC users, which Janelle Sampson presented on earlier in the day about her AAC User Lecture Series. Who better to help us understand the complexities of being an AAC user, than AAC users!

Another mum who presented spoke of having open expectations of her son and how, when he is unsettled or throwing a tantrum, she uses communication to work through the behaviour with him.  Whilst the easy thing would be to just scoop him up in her arms and cuddle him, she chooses to empower him to ‘use his words’ and to, therefore, become responsible for his behaviour.

And as Jane had said earlier in the day, behaviour doesn’t get in the way of  communication, behaviour IS communication.

In the final workshop of the day, a speech pathologist spoke very honestly of the incredible responsibility that she feels to ensure every new client she meets is able to become a competent communicator and find a robust communication system that’s just right for them.

Well, from a mum, I would like to say thank you. Thank you to all the speech pathologists, support workers, teachers, aides, parents, AAC users and carers who choose to take on that responsibility and ensure that our children’s voices are heard, no matter what form their voice may take.

And that was just day 1!

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