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Harry says… (oh yeah)

It’s term 3 of school, we’ve all found our groove and things are cruising along pretty nicely. It’s a busy Tuesday at work and my phone beeps… it’s Harry’s SSO. She has sent me a very excited text saying Harry has said 2 words together.

A bit of background on Harry’s verbal speech. Harry has about 10 words that he can say verbally. Coordinating his muscles is really tough for him so they’re all single words and all require one mouth movement. They’re all pretty functional words too, smart kid, things like “up”, “help” and “ball” (essential in H’s basketball-centred world).

We’ve done PROMPT therapy (a tactile therapy where the speechie uses their hands to touch his mouth and jaw to prompt him about which muscles to use to form a word) in the past and we still praise and encourage him when he’s trying to say something verbally. He’ll sometimes even prompt himself but, to be honest, it’s not really something that we ‘work’ on. It’s not that we don’t want him to use his voice, but I can see how incredibly difficult it is for him and how hard he tries and so that’s enough. He has his talker, his PODD book, his signs and his verbal words in his conversation toolbox so he doesn’t need to rely on only one form of communication. If he isn’t able to get his meaning across with one method, he can try another. Frustration is never the goal.

Anyhoo, I arrive at school that arvo feeling rather intrigued about Harry’s 2 words. As the classroom doors open and I walk in, I am surrounded by a bunch of excited 6 year olds all talking at me; “Look what Harry can say”, “Harry can say oh yeah”, “say oh yeah Harry”.

Harry is beaming! He looks at his buddies and, as clear as day, he says “oh yeah”. “Say it again Harry” says a friend who then reaches out to touch Harry’s face in exactly the way a speechie would PROMPT a child to make an “o” sound. “Oh yeah” he says filled with pride. “I showed him how to say it”, says one of Harry’s best buddies. (I later find out that he’s been determined to teach Harry to say “oh yeah” and the two of them had been working on it for about 3 weeks.)

Look, let’s be honest, if Harry’s speechie or I were to really focus on getting him to say 2 words together, would those 2 words be ‘oh yeah”? Probably not, Actually, make that definitely not. They’re not the most functional of words really are they? Or are they? I don’t know, maybe “oh yeah” is all the rage with Aussie 6 year olds, what do I know?

And what if I had been working for weeks on getting Harry to say 2 words – would we have gotten there? Perhaps. Would the motivation for him have been as high as with his buddies? Almost certainly not.

As I’m surrounded by all his excited friends and a delighted Harry, I blink back a few happy tears. Harry said 2 words together and he learnt it without me, without my involvement in every little step of his therapy. In fact I had no idea at all that this was going on and it wasn’t “therapy”, it was fun and learning with his friends. What a wonderful step towards independence, what a wonderful glimpse of what could be….

OH YEAH!

HandH
A black and white cropped imaged of H and his buddy who helped him to say “oh yeah”. They’re wearing their matching dinosaur vests – the fashion staple of 6 year old boys.
I Don’t Mean to Offend You, But…

I Don’t Mean to Offend You, But…

I don’t mean to offend you, but…

Those 7 words and all that you had spoken before and after hung thick in the air around us, but perhaps only I was aware of their density. The spoken air left your mouth and thickly choked itself into my soul. Words that you can turn away from. A caveat intended to relinquish your conscience of everything else that had been said. But those words had already clawed into me.

I don’t mean to offend you, but…

I could no longer withhold their physical manifestation in me… My heart raced and my cheeks flushed hot with anger and shock. I could feel the shaking of my hands as my stomach churned and my body prickled with goosebumps from the cold rush of sweat.

I don’t mean to offend you, but…

Those words will stay with me for hours, days… probably always. I have heard them and they can never be taken away from me. They are the words that have had me crying in a public bathroom, spitefully picking a fight with my confused husband and consumed with an inner tempest of thought.

What is it that you see? A disabled boy who can’t walk or talk?

I’ll tell you what I see…

I see a boy who can kick a ball, shoot a hoop and ride a bike.

I hear a boy who shouts, giggles, signs and communicates with words that are all his.

I see a young boy who is funny, caring, cheeky and smart. A boy who is boisterous and physical, but empathetic and kind.

I see a boy with a determination and strength unmatched by his peers. A boy who fought against a ventilator to breathe on his own. A boy who has endured uncountable scans, anaesthetics, stitches, casts, plates, tests, injections and tubes that would bring a grown man to his knees.

But above all of that, I see my son. Perhaps you forgot.

Your words have consumed me, but slowly they are losing their foothold as I begin to see and understand your motivation. Clouded by your fear, all you can see is a wheelchair and a challenge too great to allow your head to give him a chance and your heart to remember that I am his mum.

But I will remember that your words do not represent the thoughts of us all. I will remember that we see a boy who is showing a community what it means for us all to have a place. For all our lives to have meaning and purpose. A boy with a school who want him, friends who choose him and a family who love him.

We will give him a chance and, when you are ready to let go of your fear, we believe you will too.

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Harry spells… (walker)

Oh how I love to eat my own words… At the presentation I did at the 2017 AGOSCI conference, I talked about how the first time Harry combined 2 words in his PODD communication book, “drive” and “park”, we were SO completely beside ourselves that we drove immediately to the park despite the fact that it was 7am on a freezing cold Sunday in June. I followed this delightful memory up with explaining that we no longer jump to his every desire just because he’s used his book or device to communicate. It’s simply his voice and so, as I’ve also shared in ‘Yes, you can say no’, sometimes the answer is no.

Yes, the answer sometimes is still no, right up until he changes the goal posts…

Once again, our story begins on a cold, wet and wintery Sunday, this time in late May. I’ve set up a Super Awesome Fun Obstacle Course (read: desperately seeking ways to expend energy in our kids whilst being trapped indoors) and we’re at the basketball component so whilst Harry is in his element, he’s still full of beans and bouncing around.

I turn to Jamie and, in super-stealth-parent-mode, say; “It looks like he’s really keen for his W-A-L-K-E-R.”

Harry’s snaps his head around to look at me.

He squeals. I furrow my eyebrows. Hang on a second…

“Harry”, I say. “Do you know what I just spelt?”

He squeals and jumps excitedly on the spot.

J helps him down and H beelines for the laundry, grabs hold of his walker and looks up at me with those big, blue eyes that turn my heart into a puddle of smooshy love.

Oh my clever, clever boy.

And you know the rest… we rugged up, popped him in his walker and went straight outside to play with our chuffed little boy.

I guess spelling is the new combining! (And we’re definitely going to need an updated version of super-stealth-parent-mode… time for Spanish lessons perhaps?!)

Word by Word

Word by Word

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

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

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

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

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


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

Faking Normal School Mum

Faking Normal School Mum

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

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

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

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

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

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

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

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

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

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

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

M H and T

 

 

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

Chat

Harry says… (shop food)

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

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

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

H: picnic area

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

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

H: shop food

Ha! This guy has a memory like an elephant!

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

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

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

H: buy hyena

…whilst grabbing an African Wild Dog.

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

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

H and T Zoo

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Harry says… (Tallulah school)

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

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

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

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

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

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

H📱: Tallulah school Tallulah school

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