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!

 

Chat

Harry says… (scared mum)

Recently Harry had a fall in his walker that resulted in a precautionary visit to the emergency department. He’s absolutely fine, but there was a special moment that I want to remember. And another that I wanted to share as an important reminder for me about Harry’s first step in his evolving role in his medical care.

As Harry fell and we rushed to him I let out a terrified shriek, the shriek of a mother who has a complete paranoia of falls and whose hyper-vigilance finds it impossible to reconcile any kind of accident, no matter how small, in her care.

As far as I was aware, that was the extent of the fear that I allowed to show, one brief shriek. We decided to take H to hospital as a precaution and I snapped into Medical-Emergency-Mum mode. Like many mums of kids with complex medical histories, once you’re in MEM mode, you become very calm and focused with any remaining panic and fear squashed to the side. We know the drill, we’ve done it countless times – grab the already packed bag, change of clothes, his drink bottle, snacks, medication, iPad for entertainment, talker, charger, sort the dog, arrange care for T etc etc… Within minutes we were in the car, me driving and J in the back with H. And yes, of course I was driving, even H knows that his mum is a bit of a repressed rev head! As we start driving, H says..

H📱: scared

J&M📢: (I can’t remember  our exact words, but we both chose words of comfort for Harry, remembering all our previous lessons learned and shared in Epiphany at the Eye Clinic)

H📱: scared scared mum

Oh my heart. Looks like my caring, intuitive boy saw straight through my brave mask and knew exactly how scared his mum was.

Boardmaker symbols for 'scared' and 'mum'.
Boardmaker symbols for ‘scared’ and ‘mum’.

Later we were chatting to the ED doctor, doing our usual, “yes, he can understand everything you say”; “yes, he uses this talker to speak”.

Doctor📢: Harry, how are you feeling? Do you have a headache or any pain any where?

We navigated to the ‘health’ folder on H’s talker and he hovered his finger over the page, but didn’t say anything. The doctor went back to writing notes when a few moments later Harry said…

H📱: headache

And I saw it, the briefest flicker in the doctor’s eyes. The flicker that questioned any previous presumptions about this boy and his talker.The flicker that will hopefully ignite again next time he sees a child with a book or device.

He drew up some panadol for Harry and off he went, but the importance of that brief moment and it’s meaning for H and his future dealings with healthcare professionals remained. This was Harry’s first real self-diagnosis in a healthcare environment. There is no doubt that we have many many hospital visits ahead of us yet, most of them routine, but some unplanned and it’s vital that not only is H able to provide feedback on his symptoms, but that he is also empowered to direct his care.

H and I cuddling at hospital with his talker in our laps.
H and I cuddling at hospital with his talker in our laps.
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.

IMG_3530

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.