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…

img_8096
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.

portrait

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.
Dear Mum, you’re doing enough.

Dear Mum, you’re doing enough.

Dear Mum
I see you as your thoughts drift back to the unvacuumed home, the overflowing wash basket and the unmowed lawn whilst the faint redness that rims your eyes and the slight puff beneath them belie the lost sleep whilst tending to bipap machines, feeding tubes or a child who, unable to self settle decides to start his day at 3am.
But as sure as ABC Kids starts at 5am, the dust will blow back in, the clothes will get messy again and the lawn will keep growing. Those chores are not a measure of your worth, no, that beautiful measure is in your arms, perhaps beside you in their chair, loving you and trusting you.
You’re doing enough.

Dear Mum
I feel the tinge of guilt every time you drop your kids off at childcare, kindy, school or respite and, for a moment, you feel a weight of relief knowing that for the next few hours you aren’t mother, therapist, neurosurgeon, psychiatrist, neurologist, paediatrician et al. Perhaps I shouldn’t have gone back to work? Will my child be properly included? Do the staff understand the new sign he makes when he needs to go to the toilet? I don’t think I did a thorough enough handover with them this morning.
You’re doing enough.

Dear Mum
I see how you wholeheartedly celebrate every glorious milestone of all your children’s friends whilst deep inside you swallow down your gnawing doubt about the therapy you have chosen or the amount of therapy you’re doing at home. Today wasn’t a good day, I was grumpy and exhausted, tomorrow we will do more kneeling at the couch and I will model more words on his iPad. Perhaps you will and perhaps tomorrow won’t be a day for therapy. Perhaps tomorrow is a day for cuddles or a play on the swing. Your child can see your love and knows your strength.
You’re doing enough.

Dear Mum
I hear you artfully question your therapists and doctors desperate for someone to tell you the magic number and combination of therapies that will ensure you are doing everything possible to give your child the opportunity they deserve to reach their potential. Are weekly and fortnightly sessions of each enough, should it actually be twice a week, what if we joined a weekend group? I know you listen as they tell you you’re doing a wonderful job and you allow yourself to feel a moment’s pride until that little seed lodges itself back in your mind and you feel that no one will give you a straight answer. How much is enough, how much is too much and, terrifyingly, what if I’m doing too little?
You’re doing enough.

Dear Mum
I see the pain as you watch friendships you care for going untended as your diary fills with appointments, clinics and therapy sessions. Do they know just how busy I really am? Will they forgive me for cancelling again? Will they still be there when I come out of this haze of learning to understand and accept? Will I ever come out of this haze? I see you reading late into the night as you fill yourself with knowledge that will empower you and strengthen you. I see you as you build up a virtual network of people to walk with you on this journey and sit beside you when you’re down. Your friends understand and yes, the haze does lift.
You’re doing enough.

You love, you cry, you fight, you advocate, you encourage, you question, you listen, you learn, you nurture, you know.

You do enough.

Dear Mum

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!

FullSizeRender

My Lost Art of Small Talk

My Lost Art of Small Talk

In this unexpected life of mine there are many things that I have lost.  Things that are too hard for me to think of or to write about, things that I never even had to begin with and then there’s small talk.

Well, that sounds like a fairly frivolous thing to be worrying about losing, given the enormity of other loses that I could be focusing on.  But bear with me on this one.

Small talk was a learned art for me, I’ve always been rather fond of a good (preferably wine-fuelled) D and M. But spend enough time in your 20’s single, out at bars or working in sales and it’s a skill you pick up quickly for fear of being stuck at home a-la Bridget Jones singing in your pyjamas and missing out on a decent commission boosted wage.

I had a quick look at wikiHow to see how I was faring with my small talk and had just about decided that this entire blog post was based on a misunderstanding.  According to their step by step guide my small talk is actually top notch. Right up until;‘You probably shouldn’t reveal your thoughts on the meaning of life, lost love or death…’

Aaaah. Right.

I remember the first time I ventured out by myself after H’s accident for dinner with a few friends.  Let’s just say I barely made it through one conversation where I word vomited the horror of 4 months in the children’s hospital before quickly realising that this was too much too soon and hightailed it home.

Flash forward to a more recent event when I headed out to a friend’s engagement party.  J stayed at home as H was sick and I was pretty excited about being out with sequins on my top and cab fare in my clutch. But I stumbled. I stumbled on every social encounter. I gripped my warming champagne and wracked my brain for something to say as the snippets of conversations floated in front of me. TV shows, music, books, anything. I came up with nothing.  And then I started talking to a woman who was trying to process some tough medical news that affected a close family member. And we ended up chatting for most of the evening. This was a conversation that I felt I could contribute to.

When your daily life entails running between doctors and therapists, your evening viewing is TEDx talks on social inclusion and the books next to your bed are The Brain That Changes Itself and The Power of Now, it’s no huge surprise that your small talk game has suffered (and that you are probably well overdue for some trashy TV and magazine viewing).

So why do I care?  Surely I have bigger things to worry about than making small talk with people I hardly know?  Perhaps. But I also understand the pivotal role that small talk plays in connecting and re-connecting us. It is the social foreplay that allows us to test the waters of future friendships and reignite friendships past. And in my often times lonely therapy-mum life, friendship is not something I’m willing to pass up on.

I have a phenomenal group of women that I am connected with who also have children with disabilities. We get each other. There is no small talk prerequisite when we first meet. We launch straight into the nitty gritty of seizure management and MRI results.   And I have my old friends who (hopefully!) accept me small-talk-lacking-warts and all.

But in the not too distant future H is going to start school and, if my plans for full inclusion work out, I am going to be surrounded by mums and dads who don’t get me. We’re not going to be instantly connected through the shared shock of a life-less-travelled and, according to wikiHow, it’s probably best that I don’t share with them my thoughts on neuroplasticity or keeping an eye out for signs of PTSD.

So if I want to get any shifts in the school canteen or, more importantly, get invited around for play dates, I better start brushing up on my small talk.

Hi, my name’s Michaela, I love your shoes. Where did you get them from?

The Channel Flick

The Channel Flick

This blog post starts 2 years ago, almost to the day.

20 May 2013

It’s Monday morning and I am at work.  The building where I used to work was open plan so as people are settling in to their work week, I can hear their scatterings of conversation amid sips of latte.  I quite like Monday mornings these days, it’s a chance for me to get out of my ‘physio-OT-speechie-cook-what-have-you-mum’ clothes and dust off my rarely worn working-and-attempting-to-be-fashionable-mum clothes that harp back to a time when I had disposable time and disposable income.

“…it was so sad watching that boy have to work so hard…”

Oh, I guess someone also watched the 60 Minutes story about the young boy with Cerebral Palsy who was trialling a new therapy that might help him to walk.  It was pretty tear-jerking stuff and, as  I’ve discussed before, the media know how to pull on our heart strings.

“…and then it was followed by the Amanda Berry story…”

Amanda Berry, Michelle Knight and Gina DeJesus had, just days before on 6 May 2013, been freed after being held captive for over 10 years by Ariel Castro in Cleveland, Ohio.  Berry and her 6 year old daughter had managed to escape and contact police. These young women had suffered unimaginable physical and emotional abuse at the hand of their kidnapper.

“…I don’t watch 60 Minutes anymore, it’s too depressing…”

Sure, I can understand that people could refer to both of those stories as “depressing”, but that is their reality.  And that story of the family doing all they can to best support their son is, in part, my reality.

Yes, I applied my lip gloss this morning and may have even worn a shoe with a sneaky heel, but it’s all just theatre that may easily belie my backstage reality. I suppose the truth of it is that it’s hard acknowledging that my reality is sad to those looking in.  And perhaps the easiest thing to do would be to change the channel.

23 April 2015

I’m preparing to go to bed and quickly have a flick through my Facebook newsfeed.  I’m looking through the recent posts in a group for parents of children with disabilities when I see the headline “Precious. Inspiring. Perspective” and the confronting image of a young boy with a disease that causes his skin to be as fragile as that of a butterfly and means that he is in perpetual pain.

On seeing that story, my first response is to close my Facebook, to change the channel. In a split second I quickly rationalise my decision – I’ve had a hard day, my kids are sick, I’m exhausted, I have no more tears to cry this week.

And in that instant, my emotional response from 2 years before on over-hearing that a story akin to my reality was worthy of a channel flick, came flooding back to me. No, I will not change the channel on this boy and his mum.

I watched the 12 minute YouTube clip entitled The Butterfly Child of this smart, tough kid and his devoted mother navigate their reality with love and courage. And even though I cried and am now going to bed an hour and a half later than planned so I could write this all down, I am glad I didn’t change the channel.