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Harry says… (Chinese New Year)

It’s Chinese New Year today and H’s school had a super fun (and super loud) parade this morning to celebrate!

We’re on our way to school, H is wearing his touch of red and a delightfully noisy tambourine is packed for the celebration. As per usual, H has selected his tune of the day to accompany our journey to school – this morning’s school run was brought to you by Uptown Funk by Bruno Mars.

I remind him that it’s his Chinese New Year Parade and that T and I will be there to join in the fun. Realising that it’s not a word that he hears often I say Chinese New Year in PODD speak, meaning that I include the PODD pathway to the word.

M📢: Today is school special events Chinese New Year

Briefly after, H grabs my attention to turn down Bruno so that he can say something…

H📱: Chinese New Year it’s time

After almost 5 years of having PODD in our lives I’m now fluent in PODD and it’s so helpful to enhance H’s understanding and to ensure he has access to words when I can’t model to him, like when I’m driving, in the kitchen cooking, hanging up washing or any time really.

I highly recommend adding PODD to your verbal repertoire, although preferably only when your kids are there. I don’t think baristas are too keen on a “food and drink drinks coffee greetings and manners please” order!

Happy Chinese New Year!!!

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Harry says… (big)

It’s day 4 of the first week of school and we’re happily settling back into our routine after a loooong summer holiday. Harry has bought his first set of readers home today and is keen to read them.

I love readers and find them brilliant for repetitive modeling as the first sentence of each page is usually the same. Sometimes I model, sometimes we just read. Sometimes I point to each word, sometimes H points. We just enjoy the quiet time together, although there is usually a nosy little 3 year old butting in, but that’s all part of the fun!

Today’s first reader was called “I am Big”. I popped it on my lap and knowing that Harry can say “I” and “a” sounds I pointed slowly to the first two words in the title and paused to give him time to say each word.

When Harry points to a word and makes a sound, we always assume that he has said the correct word and congratulate him. Just because verbally it doesn’t sound like the actual word doesn’t mean that he doesn’t know that word. For all I know it may sound perfect in his head, it’s just his muscles that aren’t delivering the word verbally the way we would expect. (Least dangerous assumption and all that good stuff.)

But of course I’m just human, and I’m also his mum, so when he does say a word that sounds close to what’s written, it’s a pretty thrilling moment.

As we’re on a roll with H saying “I” and an “a” sound for “am”, I point to “big” and do a nice Hanen-esq pause. And without missing a beat…

H 📢 : bigag

M: Harry, did you just read big? (I ask excitedly)

H📢: yea (delivered completely nonplussed with a not-so-subtle undertone of “obviously mum”)

And there you have it, we can never assume to know what our kids do or don’t know. It’s so much harder for them to show us all the wonderful things that they’re learning so we have no choice but to keep teaching them and keep believing that they are learning. The alternative is simply not an option.

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Harry says… (what)

Using question words is not a forte of H’s. He tends to get his questions across using nouns and and a questioning expression. Totally fine and in classic H style, also quick and effective – his modus operandi when it comes to communication. But it’s still important that he learns question words and so we model them when we can. He hasn’t much taken to using them himself yet though, the H method is still his go-to.

A couple of weeks ago during a speech session whilst reading a hilariously silly book aimed at 6 year old boys, his speechie modeled “what” when H was laughing at a particularly silly moment. With the “what” accompanied by a vocal “whaaaaaat”! This made Harry crack up even more.

Yesterday we were playing basketball and I shot a shocker of a goal with the ball going right over the top of the hoop. Remembering our speech session, I quickly modeled “what” on H’s talker which he thought was hilarious.

Cut to later that arvo, we’re unsurprisingly deep into another basketball sesh, and H shot a goal even more atrocious than mine, with the ball ending up across the passage and in our bedroom. We both cracked up laughing and he immediately reached across to his talker…

📱: what?! (followed by H’s gorgeous cackling)

We both had a brilliant belly laugh and carried on playing ball.

And hey, who wants to learn boring old questions words when you can be cracking jokes and learning fun, entertaining question words!

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!

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

The Communication Slow Patch

The Communication Slow Patch

When your child uses a device you become hyper-aware of each tiny little gain, every new word selected, each time 2 or 3 words are used instead of 1. You’re such an integral part of their learning that, when the going is slow, you feel it every moment. We’re in a slow patch at the moment and it’s not easy.

Learning an AAC system is so completely different to learning and then using spoken language. Tallulah, H’s little sister, is surrounded by people who use her mode of communication ALL THE TIME. She  comes home from childcare saying words that I know I have never said to her and, because of my experience with H, I am so tuned in to all her little language gains. But they’re too fast, I simply can’t keep up. She seemed to jump from combining 2 words to coming home singing songs just about overnight. Well, not quite, but to the AAC mum, it may as well be!

I was chatting to an insightful friend about our communication slow patch and, as she said, all kids tend to do that – focus on a different area to develop from time to time. I realised that just before I had been talking about H’s wonderful physical progress at the moment. He can now walk just holding my hand. Yes, JUST HOLDING MY HAND!!!! It’s nothing short of astounding to me when I can still clearly picture him in the weeks and weeks post injury not even able to hold his head up. (But then logically it’s also not that astounding when I think about every hard fought for step that he has chosen to make.)

He wants to walk E.V.E.R.Y.W.H.E.R.E. And if you won’t hold his hand to help him get there, he will pull himself up on any reachable surface, from couches to beds to rocking chairs and once just using the little turny-knob-thingy (you know what I mean right?!) on a window! It’s wonderful and terrifying all at the same time as I’m constantly worrying about what ridiculously small and unstable thing I’m going to find him launching himself up using next.

Stepping back and looking at what’s happening for him, it’s quite clear that, right now, H wants to concentrate on walking and being physical and so that is where the majority of his focus is going. Not every communication slow patch is quite as clear as this one in terms of another skill acquiring his focus. Sometimes there appears to be no reason at all for a slow down, just a temporary change of course with no clear direction.

During these quieter moments it feels even more important for us to remember and celebrate each wonderful moment with his communication to keep the motivation going for him (and us!) and as a reminder to us to just keep chatting to him because it all counts. Before this blog, and even still now, when he says something funny or new or just a simply wonderful everyday something that I want to remember, I jot it down in my phone or take a picture. I love scrolling through these and knowing that whilst he may be slightly less chatty at the moment and not taking that next communication step as quickly as I’d like (and why on earth should my timeline be his timeline AND the next step that we’re encouraging is a pretty challenging one!), we’re still chatting.

He still has access to a large and robust vocabulary.

He still has access to his talker wherever he may be.

He is still surrounded by people who will happily to chat to him using his talker without demanding that he uses it back.

He still knows that what he has to say matters.

He still knows that he has a voice.

And so for now, we will harness his physical motivation and encourage him along, remembering that, with all of the above in mind, we’re doing the best we can for him. His voice and how he chooses to use it, will always be enough. And, when he’s ready for his next communication step, we will harness that motivation and cheer him on every word of the way!

 

A black and with image of T and H’s feet – the cutest little standing feet I’ve ever seen!