Diversity Muscles

This last week Matt has had some wonderfully positive play-encounters with children who were comfortable around him, and in contrast, let's call it a disconnected play-encounter, where the children were awkward and unsure how to engage with Matt. Now that I've worked through the emotional ache of seeing Matt not belonging, it got me thinking about how we, as parents, can best equip our kids to connect with children who are different to them.

 

We’ve all seen those inspiring and tear-jerking videos that do the rounds on social media. The one with the child who has a disability and is coming last in the race, but is running his heart out, and his courage and determination draws out fellow pupils to run alongside and cheer him on. (Seriously, watch it if you haven't) Something of this really connects with us, we are moved, it is just so emotional. Why?

Is it that we all fear being the outcast? Our society honours those who fit in with the latest trends, things and thinking. We know what society does to the outcast – the unenviable reward of loneliness and aloneness. In these videos we see children rebelling against this societal reward system and they choose to cheer for the one who is coming last, the one who is not deemed hot and happening by society’s standards.  

And something in us cheers them on.

Is it our longing that we too would be cheered on instead of judged when we are functioning at our weakest and worst; that we would be accepted when we let our masks down and show the world who we really are; that we would be embraced and belong because we are human, not because we fit a certain image?

Is it our longing that we would be like those young people who throw off the standards of society of what is cool and comfortable, choosing a different way of engaging?

And those of us who have kids of our own hope that our children will choose this way if they were ever in the situation...

That they would embrace rather than reject.
That they would walk with humility rather than superiority.
That their hearts would be open not closed to those who are different to them.
That they would delight in diversity and not fear it.

 

I have come to realise that this much-desired goal does not just happen. Just as our physical muscles need training and exercise to run fast and far, so our social muscles need training and exercise to feel comfortable to embrace those who are different to us.

It is not just going happen.

Telling our kids to be nice to all people is not enough. Telling our kids they must play with everyone is not enough. Just like telling a child that she must run fast in the race is not going to give her the ability to physically move her body at speed.

So what training is required to be able to delight in diversity? Here are a few ideas:

1. Placing our kids amongst those who are different to them. Actually doing it. Being in schools and churches and playgrounds where there are kids from different genders, abilities, races, ethnicities, class back grounds, religions, etc. You get the picture. How can they possibly strengthen those diversity muscles if all their friends are all the same as them?

 

2. Helping our kids make sense of this diversity thing. Chatting it through with our kids about what it is like playing with someone who is different. What is hard? What is interesting? What have they learnt? What is cool? What is scary? What new thing can we do at home?

3. Working out our family values that can build those diversity muscles. How about some of these values?

• We cheer on each other for the unique way God’s designed us. It is never acceptable to belittle anyone for being different.
• Mistakes are cool, cos we learn from them. So we don’t tease if someone fails.
• Kindness, kindness, kindness.
• Empathy – what do you think that person is feeling?
• It’s fun that we are not all the same – you can like pasta and he can like fish fingers

4. But here’s the most crucial training exercise for our children, the one that the other training exercises all depend upon. It is the deal breaker.

It is this: that we, as parents, place ourselves in settings where we engage with diverse people; that we have friends who are different to us. We cannot authentically train our kids to buck the societal system that rewards sameness if we are succumbing to this system in our own lives. As with most life skills, our kids are going to learn more from us about how to delight in diversity by watching us as we do it. Even if we don’t get it right all the time, even if it is uncomfortable sometimes, even if it takes more energy than we feel we have, this is how they learn. I make it sound like diversity is drudgery, but the reality is that doing diverse friendships is actually more rewarding than it is hard work. How better to motivate our kids to step through their fear than seeing us shining with the joy of being free from the “safeness in sameness” mentality.

Delighting in diversity - what a meaningful gift to give our kids…

to live life free from fear of those different to them

 

to still be confident when they are not surrounded by others who are the same as them

 

to experience the joy, yes joy, of swimming upstream against society’s values of who has worth and who has none

to break the power of prejudice

and to be part of changing the world    

Yesterday's mistakes are today's aha moments

"Yesterday's mistakes are today's aha moments"

This is something that Rose-Anne Reynolds, who heads up Inclusion at Matt's school, (and who blogs here), mentioned to me as we met last week to reflect on Matt's school experience. What she said resonated with me.

Yesterday's mistakes are today's aha moments...

what does this mean?

it means that you don't know the way

it means that you are comfortable with uncertainty

it means you are humble because you cannot be sure

it means you cannot dress yourself with arrogance and superiority because they just don't fit well

it means that you when you try something you are not assured of success

it means that you take a risk

it means you have to be ok with things not working out

it means that you might face failure

and when things haven't worked out then it means that you don't
fall apart
become discouraged
feel like a failure
give in to the fear
or give up

it means that when something hasn't worked...
you stop and look
and learn
and ask questions
and learn more
and dream again
and get creative
and then you try something else
knowing that this something else might not work,
but then again, it might


I am grateful to Matt's teachers who really do live out this belief and do not shy away from taking on the unknown. We have tried some things with Matt, and then have had to change part of it, and then tweek another part, and then start doing something new, and then change that, and then alter one part and and and... Last year Rose-Anne and I met at least once a month to do this. She met regularly with his facilitator and teacher. I chatted with the facilitator daily. I met with the teacher at least twice a term. It took time. It took effort. But it was worth it.

As a parent I found the beginning of the process frightening. Matt is so precious to me, I wanted to protect him from anything that might harm him. In some ways I saw him more vulnerable than other children. That if we didn't get it right the first time then we would somehow damage him or make his condition worse. It was hard for me to let Matt go into the unknown.

But I didn't have a choice - there were no guarantees. Fortunately Rose-Anne and her team modelled the freedom of not being scared for failures. This gave me courage.

I came to see that Matt is really not as fragile as I thought.
In fact he is rather resilient.
And I came to see he could show us the way too.
And so we have had many aha moments
And Matt, and I, and the school are all better for it.

Support

I love this picture of Matt participating in a his school's swimming gala at the end of last year. For me it symbolises inclusion. The question was never - should Matt participate in the gala? nor was it can Matt swim well enough to be included?

His inclusion was a given.

The question was what support does Matt require to participate?

And in this picture you can see what supports were put in place... a kick board, flotation ring, and a friendly pair of arms (just in case).

And Matt was BEAMING.

Especially at the end of his second race when all of his classmates and children from other classes were all chanting GO MATT! GO MATT!

"courage and determination and happy smile"

Reflecting back on the Award Ceremony at Matt's School in November 2014...

 

Matt carefully walks up the stairs onto the stage. He know his balance isn’t great so he is cautious. His teacher is standing waiting with his certificate in her hand. Even though I am watching from a distance, I can tell that this is special for him. He takes the cardboard in his hand. Hugs his teacher. With a broad smile he thoughtfully walks along the stage to where his peers are standing. He turns to the audience. And he proudly holds his certificate for all to see. It is very affirming.

Each child in his class gets a certificate and each certificate is different because his teacher has thoughtfully described the one or two strengths or character traits that make each child shine.

Matt’s certificate says:

For his courage and determination and happy smile

And I think about those words. They resonate with me. Because I know that Matt understands a lot more than he can say. His mouth lets him down often.  I know that he wants to do more than what he physically can do. His body lets him down sometimes. I know that he sees this world a little differently to me, with some things that make headlines for him are not even noticed by others. Sometimes he doesn’t make sense to us and I am sure we don’t make sense to him.

And despite this he hasn’t given up or held back. Every day he has bounced out of our front door to school. He is always pushing the boundaries on what I think he can do. If he sees another child going down that fireman’s pole on the jungle gym then he wants to try too – even if his arms can barely hold him. If Nic says a poem then Matt wants to say it too, even if those words get stuck. There are many more examples of this strong drive that Matt has to participate. Even when it is hard for him. Even when it is new and scary.

And so yes, I too celebrate his courage and his determination and in the midst of joys and challenges…his happy smile.

Matt is the second from the left

 

 

 

He was shining

So grade 1 is over. And as the dust settles I am reflecting on Matt's year. I want to share with you some highlights and notable moments.

 

The first is when Matt performed on stage.

He danced with his class...doing all the moves at the right time. Yes, he did the moves in his own version given his body's unique way of doing movement...but he was right in there with everyone for the whole song!

He did this in 6 shows!

And he loooooved it!

Taking a bow at the end of the performance

His school puts on a 'real' play with music, acting, sets and lights. Everyone in the school gets to participate. Everyone. I was so anxious about Matt and how they would include him. But more about that later. Matt loved it. He loves music...and there was lots of music as each class did a dance. He loves movement and actions, as I mentioned, there was lots of dancing. (The only thing he didn't like was wearing make-up, and so he didn't have to.) And there was no talking required. Neither did his classmates do any talking on stage. Matt's speech remains a challenge and in this "talk-free" activity he could just participate like everyone else...doing just as they were doing. I think that meant something to him. Or maybe that just meant something to me.

 

The play took place in September (I think) and though 3 months have passed Matt is still slightly obsessed with watching the DVD of the play. As he watches he does the dance of his grade, remembering all the moves. And he also does the moves to the dances of the other grades, the teachers dance and the parents dance!

This play was also a journey for me. In the hours before we went to see the play, I felt nauseous with fear. I was trying to put my finger on why I was so anxious because Matt had already performed a number of shows and we had had positive feedback. I realised that I was terrified because for most of Matt's life I had been right beside him in case he needed me to reach out and intervene. It has been a big step for me to trust others - Matt's previous teachers and facilitators to step into that role of being there beside him. Now he was going to be on stage in front of 600 people and there would not be anyone beside him. And I would be sitting in the audience watching him. And if he needed me or if he did something inappropriate I would not be able to intervene or help him - I would just have to watch from afar. It was scary. But the truth be told, he wasn't alone...his teachers were waiting right in the wings of the stage...his friends were with him on his left and right. He was being held by this community. He was safe. And he didn't need any mommy intervention. He was shining.

Matt in his costume, ready to do head off to his first performance!

I am so grateful for Matt's exposure to dance, being on stage, and music. It has definitely sparked something in him. I am intrigued to see what will unfold - now that we have been made aware about how much dance means to him. Had I been given a choice early in the year, I would have seriously considered not letting Matt participate. Mainly due to my fears and anxiety, and I would have said something like "it will be too much for him". I'm glad I wasn't really given the choice. And I will remember this the next time I want to hold him back.

Big brother again...

Matt has taken to his role of big brother for a second time marvellously. At the end of June his little sister, Kara Joy, was born. (This also explains my absence from blogging).

 

Matt has shown us his gentle side. Matt likes his routine in all areas of life - also with Kara. He has this little ritual of engaging with Kara and this gets played out in the exact same manner a number of times during the day...

Matt asks: "Hold him" (he still gets his gender pronouns a bit confused)

Matt sits and waits for me to put Kara on his lap. As she rests in his arms he beams like a lighthouse on a dark night.

Matt says: "Kiss her"

He proceeds to give her a quick kiss and hands her back immediately, keeping his cuddle very short.  

And he always ends the interaction with “Aah so cute” and I am expected to repeat this phrase in agreement with him.

Matt has his own little baby that he cares for, often mimicking what I do with Kara. Hugging, cuddling, and giving kissing his doll has a real baby. He has even given her a name: "Goo goo ga ga"

Matt gets distressed with Kara’s crying and will frantically start a search for her dummy (pacifier) when she wails. I will hear his heavy footsteps running from various parts of our house as goes dummy-hunting, and often he returns triumphantly with it to appease Kara. If he can’t find it he stays well away from her until I’ve settled her.

Matt was totally delighted when Kara was able to smile back at him. Her toothless grin is like sunshine and Matt has developed just the right tilt of the head and big grin to make Kara giggle. It is wonderful watching the two interact. In fact it is precious watching all three of my kids interact.

 

 

Primary School Inclusion: The Nuts and Bolts #5

# 5 The Classroom

This is what I see when I walk into Matt's classroom...

There are the things you would expect to see: lockers for school bags, chairs and desks organised in small groups, colourful pictures on the walls with inspiring messages or illustrations of the work they are doing in class.

Then there are these things that make Matt's experience of the classroom positive and rewarding...

There are some budgies in a cage...Matt is drawn to greet them every morning. Something about animals is very calming for him.

A bookshelf strategically positioned to create a slightly separate space, with a foam-letter carpet on the floor and lots of textured pillows...a place that Matt likes to go and rest; and stroke the pillows for the joy of the sensory experience.

In the front of the class there is an open space where the children gather to sit and listen to Robyn Fleming, the grade 1 teacher. She has a basket of bright coloured, textured toys - some with soft spikes, some soothing to squeeze, some squishy, some firm. Matt, as well as some other children, get to hold one of these to satisfy their sensory appetite whilst listening. Robyn also has a giant ball of "prestick" which is also calming for sensory seeking hands.

Matt's desk is alongside one of the small groups of desks. Sheila, his facilitator, sits alongside him. On his desk is a little box of spinning tops which helps strengthen Matt's fine muscles in his hands. There is a small laminated poster of feeling faces so that he can communicate his mood to Sheila. In his desk is a sand tray that he uses to trace his letters, giving him an alternative to having to use pen and paper. On his pencils and crayons are supports so he can grip them with greater ease.

And if this classroom space becomes too loud for Matt or the work that is being covered is not at his level, then his facilitator can take him for a walk to other parts of the school.
To the quiet library where two cheeky rats live.
Or to the audio-visual room where he can do interactive learning with a huge screen or do his work in a less sensory rich space.
Or to the school entrance where there are engaging activities for all the children who need some alone time away from the hustle and bustle of their classmates, as well as a big fish tank which is sensory soothing.
Or outside to the animal quad where he can engage with the healing world of animals: the rabbits, ducks and birds.
Or to the Learning Support Co-ordinator's office which is like a toy store filled with loads of Occupational Therapy inspired activities.
Or outside in the playground where there he can draw with chalk on the pavement or do other movement related learning.

In fact, for Matt, the whole school is his classroom.

......................................................................
Blog posts in this series:
Introduction - for more on why I am doing this series on how inclusion can work in real life
# 1 Leadership with Vision
# 2 A Flexible System with Creative Solutions
# 3 Learning Support Co-ordinator
# 4 The Facilitator

Primary School Inclusion: The Nuts and Bolts #4

#4 The Facilitator

Matt's most tangible form of support is that of Sheila, his facilitator. She is there to greet him first thing in the morning, stays with him through out the day until I arrive to fetch him.

I see her role as a marvellous balancing act....

between supporting Matt to engage in classroom activities and learning, whilst not doing anything for him...

between helping Matt socialise with the other children, whilst knowing when to take a step back so her presence doesn't become a stumbling block to Matt making friends...

between not limiting Matt's experience by allowing him a chance to try what the other children are doing, whilst not setting him up for failure and feeling like he can't keep up...

between coaching Matt how to connect with the children more appropriately, whilst allowing Matt to be himself and explaining his reactions to the other children so they too accept him for how he is...

It is also a bit of a balancing act for us parents. We are officially her employer as we contract and pay her, yet she spends all her work time in the school environment and needs to be accountable to school to a large degree. Decisions we make between us and her thus also need to be checked out with the school. The school also has to hold a balance between having the facilitators who are not official staff members, yet they work alongside the staff every day supporting the staff in what they do.

Our journey with Sheila started last year when the school recommended her to us as a potential facilitator. This being a learning curve for us, we weren't 100% sure what to look for a facilitator. It is a confusing journey for a parent, because there's no standardised qualification or process of finding a facilitator. Further you are not just finding an employee but someone who has to bond with your child. This adds an emotional aspect to an already tricky decision.

After deciding that we would hire Sheila she met with Matt at his previous school, chatted to his then teacher, and also came to spend some time with Matt during the school holidays. Sheila was thus a familiar person to Matt on his first day at his new school. It has reassuring to me to see how much Matt has connected with Sheila, and continues to do so. Every morning his face lights up when he sees her and he runs to hug her.

Sheila receives guidance and support from the Learning Support Co-ordinator, his educator and myself on how to engage with Matt. We are all trying to figure out how to support Matt in this school environment so there is much trial and error. We rely on Sheila giving feedback as to what seems to work and what doesn't so we can make changes. It is a good thing that her confidence is not undermined by this lack of certainty and the need for a high level of adaptability. To make this all work we rely heavily on good and regular communication - most days Sheila gives me verbal feedback on how Matt is coping, as well as completing a short, written description of what activities were completed that day.

Inclusion is not about somehow making Matt "ready for school", and able to complete some minimum tasks so that he can "fit" into the institution. Rather it is about understanding what support Matt needs so he can participate in school as he is. Sheila provides this vital support to Matt so he can successfully belong, participate, learn and be happy at his school, just as he is.

............................................................................

In South Africa there is no official qualification for a facilitator. It could be a retired teacher, or a student, or someone who has a real heart for children and is willing to learn. Sometimes schools help parents find a facilitator, other times it is up to the parents. We know of a psychologist who trains facilitators and has started a web-based "notice board" where parents can advertise for facilitators. Check out LeftNetwork to find a facilitator and to learn more about training of facilitators.

For examples of a Facilitator's employment contract and job duties please feel free to contact us.

......................................................................
Blog posts in this series:
Introduction - for more on why I am doing this series on how inclusion can work in real life
# 1 Leadership with Vision
# 2 A Flexible System with Creative Solutions
# 3 Learning Support Co-ordinator
# 5 The Classroom

Primary School Inclusion: The Nuts and Bolts #3

#3 Learning Support Co-ordinator

You know that centre part of the bicycle wheel that holds all the spokes in place and somehow connects the wheel itself to the bicycle. Well,  I'm not sure what the name is for that 'thingamajig' is but that is what the Learning Support Co-ordinator is to Pinelands North Primary School in terms of making inclusive education a reality.

Rose-Anne Reynolds currently fulfils this role with much passion, a wealth of knowledge and a firm and feisty belief that no child is to be labelled as "special needs" (with the implication the other kids are normal and this child not). Rather she holds that all children have needs which are reflected in different ways and at different times of their school careers. And the school aims to support each child with their particular needs. But more on that later in a later post.

Rose-Anne is a qualified educator, but doesn't teach a class of her own. Rather she supports the educators in the school by working with them to find creative and unique solutions to support the various children in their classrooms. This means meeting with parents, connecting with the children, linking with the educators, networking with therapists, and mentoring facilitators so that these creative solutions are found, agreed upon and implemented. And I'm certain she probably does a whole lot more than this!

Our experience has been that she meets with me every two weeks to chat through how Matt is coping. She gives me feedback from his facilitator and educator. She listens to my concerns and recommendations. I also give her feedback from Matt's Occupational Therapist and Speech Therapist. Together we work out what could work for Matt. Sometimes the solutions are easy, other times it means setting up a meeting with others in the school system. She then communicates what has been discussed to the various people in Matt's life at the school. She also has played a major and continuous role in supporting, training and mentoring Matt's facilitator.

From my observation, this role of a Learning Support Co-ordinator relieves much of the potential chaos that educators could experience when having children with diverse needs in one classroom. In fact, I would go as far as to say, that without such a person, the inclusiveness and flexibility of the school system would not be possible.

Remember that this school is a government (public) school with modest school fees - from my understanding there have been creative ways to fund and establish this position of a Learning Support Co-ordinator. For details on how that was done, please chat to Ann Morton, principal of Pinelands North Primary School.

UPDATE: Check out Rose-Anne's blog for some inspiring thoughts on education and inclusion...all from a perspective of an educator.
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Blog posts in this series:
Introduction - for more on why I am doing this series on how inclusion can work in real life
# 1 Leadership with Vision
# 2 A Flexible System with Creative Solutions
# 4 The Facilitator
# 5 The Classroom

Primary School Inclusion: The Nuts and Bolts #2

A Flexible System with Creative Solutions

There is no one ingredient for success when it comes to inclusion, but I've noticed that inclusion is an authentic reality at Pinelands North Primary School because system itself is inclusive and flexible.

This is what I have observed at Matt's school (though I am not sure how it all works yet):
There is a system, it is not just chaos. Yet the system somehow has an in-built flexibility that means that there is a LOT of room for adaptation when it comes to each child's needs. The leadership of the school has created a system that doesn't require each child (or teacher or parent) to be the same or to function with uniformity. You'd think this would lead to anarchy, but it doesn't. Rather there is a strong sense of flow and unity. This flexibility seems to allow for the creation of unique solutions of support to children, and it allows for these to be tried and implemented without too much stress to any part of the system or on any person.

Now you might think talking about systems is rather boring. But I have come to understand that the system - the way things are run, the rules, the expectations - can almost become a being unto itself , a monstrous machine, which can actually squash individual good intentions as well as tangible action steps towards inclusion.

I have seen that the value of inclusion is not just added onto the system of the school but rather the value of inclusion has been intentionally built into the system itself. Now how that took place, and what steps are needed to make it happen in another school, that you will have to ask Ann Morton, the principal of Pinelands North Primary School. I hope to hear the story of this one day, because I am sure it is fascinating. But for now I have come appreciate this school system that really doesn't see my precious Matt as an "add-on" but works towards his integration as much as every child who attends the school.

......................................................................
Blog posts in this series:
Introduction - for more on why I am doing this series on how inclusion can work in real life
# 1 Leadership with Vision
# 2 Learning Support Co-ordinator
# 4 The Facilitator
# 5 The Classroom

Primary School Inclusion: The Nuts and Bolts #1

#1 Leadership with Vision

From the first time I met Ann Morton, the principal of Pinelands North Primary School, I could see that pursuing inclusive education in her school was not just 'a thing that she did', but it was a core value to her as a individual. And inclusion, for her, is not just about children with special needs, it is about embracing, celebrating and actively engaging with cultural, racial, gender, learning needs and economic diversity. Something deep in her soul is convinced that all children benefit from "doing school" alongside those who are different to them. I remember my first meeting with her and watching her eyes light with fire when she talked about a school system and environment that recognises each child as an individual and works towards each child's unique educational progress. These were not just words...these seemed to be the air that she breathed.

Ann's passion and vision has, over the years, has been translated into the various layers of school leadership and worked into the cogs that keep the school turning. More about that in a future post.

In my search for a school that was open to including Matt I knew that reading websites, year books, and pamphlets was not enough. I knew that I had to actually look into the eyes of the principal to see what their heart and values were when they heard about Matt and when they talked about how they could include him. I intuitively felt that successful inclusive education is largely determined by leadership, and after meeting Ann, I am now certain of this.

......................................................................
Blog posts in this series:
Introduction - for more on why I am doing this series on how inclusion can work in real life
# 2 A Flexible System with Creative Solutions
# 3 The Learning Support Co-ordinator
# 4 The Facilitator
# 5 The Classroom

Primary School Inclusion: The Nuts and Bolts #Introduction

For a long time we have read about inclusive education and the benefits. Lloyd and I agreed with the principles of it so much so that we moved house and suburbs to live near a school that was pursuing it. But the practicalities of how it worked out in the primary school classroom were not clear in our heads, and it has only been this year - as we are seeing it in action that we can see how it works. And to our relief that it does indeed work.

So I thought I would share some of our experience of the day to day realities of inclusion in a series of blog posts. I know in Matt's early years if I had known what I know now, I would have been a whole lot less stressed about his education. Hopefully this can inform some other parents out there who are having to make the choice between special needs schooling and inclusion in a mainstream setting. And maybe even inspire other educators and schools that it is really possible!

I acknowledge that I will be writing about ONE experience - that is our own, with our unique Matt, at a particular school here in Cape Town. This is not a recipe for all - rather inclusion will and should look different in different schools and for different children. I also realise, certainly in other parts of South Africa, due to lack of resources and leadership commitment, there may not be schools like this available. So it is not a given that all can access this type of inclusion. However my deep desire is that our sharing might spark hope for parents to pursue something like this, to ask of their local schools to start thinking differently, and to inspire educators that inclusion is indeed possible.

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Blog posts in this series:
# 1 Leadership with Vision
# 2 A Flexible System with Creative Solutions
# 3 The Learning Support Co-ordinator
# 4 The Facilitator
# 5 The Classroom

Good Inclusion links

Here are two links that I have come across that I don't want to lose track of.

First is a moving, inspiring, and heart-warming speech by a mother who  shares why she is passionate about Inclusion for her son

And here is a great article written by a teacher who worked with children who have special needs in a setting where these children were educated in a separate classroom within a mainstream school...she shares some really useful perspectives on why Inclusion should be pursued...

Here are some of my favourite quotes from her article

"We have absolutely no way to know what a child will or will not be able to learn, and so the best we can do is assume competence and provide supports and accommodations that respond to the learner’s needs. Not parallel curriculum! Not different goals! Our professional obligation is to give all children full-time access to the general education curriculum (social and academic) via class membership that is valued."

"Belonging is a prerequisite for learning, and without a sense of belonging, learning is difficult."

Sometimes my heart breaks

Sometimes I can see he just doesn’t understand

I explain but my words don’t bring any light

He remains in the dark

And my heart breaks

 

Sometimes I can see he is frustrated

He throws a toy, he pushes his brother, he hits a friend in the face

I don’t know why

He doesn’t have the words to tell me

I remain in the dark

And my heart breaks

 

Sometimes I don’t understand his world

What makes him really mad seems insignificant to me

What makes him so happy seems trivial to me

We look at each other from opposite sides of a mirror

Only seeing  the reflection of our own confusion

Not seeing each other

And my heart breaks

 

Sometimes I have to just let me hands fall at my side and hang my head

Because I don’t know how to help him

Because I don’t know how to reach him

Because I don’t know how to understand him

I only know that I am a powerless parent

And my heart breaks

 

Sometimes – not all the time, not every day, not even every week, but sometimes…my heart  just breaks.

 

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I wrote this poem last night. I needed an outlet for the pain and frustration I was feeling in my parenting of Matt. Today is already a better day, I have had bonding moments with Matt that have connected us, we have understood each other on other levels. Though the frustration does remain, it is not as intense. I felt I should share it as part of my commitment to authenticity and recognising that life with someone who has RTS is not easy, rewarding yes, but not easy.

 

Costly but valuable

Matt started Grade 1 at Primary School this year in January. This was a very significant milestone for us on many levels. One of the reasons, was that we were taking the next big step in our the pursuit of inclusive education.

These days people seem to get excited about inclusion, and most of our friends really celebrate the fact that we have found a mainstream school that sees the benefits of including Matt. This photo below of Matt and me on his first day at school got over 140 likes on Facebook. Now for us 140 likes is massive; we don't get more than 10 or 20 likes or comments on our usual posts.

It got me thinking. It is easy to press a button to say you LIKE inclusion. And I am glad that people do, but I have been wondering if people understand the personal cost, the energy, the different way of thinking, and the commitment that it takes to make inclusion happen.

Inclusion isn't the easy option in life because it is moving in the opposite direction from which society flows. We are naturally drawn to people who are like us. When every one is the same then it is easier to connect, to agree, get things done, and to understand each other. It is comfortable.

Treating every one with the same standard and in the same way is efficient. Our mechanised age has made us used to mass production and uniformity. Inclusion requires the opposite. It requires embracing difference, having different standards, allowing kids to do things in different ways in the same classroom.

Inclusion means not having the answers, it means figuring things out as you go along, and being OK with the fact that you are not always certain of the way ahead. It requires humility and curiosity.

It means being flexible and adapting the system to make space for the individual. It's a school system built around the thinking that each child will be an exception to the rule...rather than expecting each child to follow each rule.

Inclusion means learning to become comfortable with people who are different to you...who think differently, who act differently, who respond differently and don't always make sense. It is easy to press that Facebook LIKE button but the real way to make inclusion happen is in one's own life.

Are you putting yourself into situations where you can build friendships with those who are different, where it takes more effort, more energy and is less comfortable?

Are you exposing your children to people and situations that are beyond your and their familiarity; coaching them to celebrate that which is different and those who are different, and not fear it?

Yes, pursuing inclusion is costly, but that is what makes it so valuable.

Everybody is a genius

I found this on facebook, and just love it...

Lasting Foundations

We moved house in December. If you have had the privilege of doing the same, you will know it is emotional and stressful. You have to let go of living in that one space in order to enjoy the benefits of living in the new space. Letting Go. That's that hard bit, but necessary.

Moving Matt to a new school feels similar to moving house. But the letting go feels worse. Actually it feels more like a demolition of one's old house only to have to build a new house from scratch. Am I being a bit melodramatic? Let me explain...

Matt was a Barkly House Harfield Road for two years. In that time precious "building work" took place in order for Matt to grow, learn, participate and be happy in that school setting. I had to build trust and a working relationship with Matt's teachers and teacher assistant - this required many meetings, honest sharing, checking out expectations and basically lots of communication. I had to build a support structure for myself amongst the parents - slowly sifting out the parents showed only pity and said things like "I don't know how you do it, I surely couldn't", as if Matt was an intolerable thing to cope with; whilst holding on to those parents who saw Matt as a person and were truly delighted that their child had the opportunity to build friendship with him.

Matt had to build relationships the other children. This was not easy for Matt, especially as he was developmentally not-so-ready for friendships when he started at the school, and add to that he could hardly talk at first. Matt had to build trust with his teachers and the teacher assistant too, this was a little easier given their consistent and patient interest in him, but it took time.

The children had to be helped to understand Matt, and be coached as to how to engage with him in a way that he could understand. They had to learn to be patient, giving Matt time to speak. They had to learn not to do things for him, but let him try. They had to learn to cope with the grumpy side of Matt, when it was quicker for Matt to push or bite than to find words to express himself. They did all this and came to appreciate his role in the class, missing him when he was off sick and standing up for him when kids from other classes may have misunderstood him.

The teachers and teacher's assistant took time to get to know Matt, to understand him, to see past his quirkiness, to celebrate his strengths, to find the balance between letting him be who he was but also slowly nudging him to keep growing, to facilitating his connection with classmates, to not putting any limitations on his learning, to always experimenting with different ways to help him develop, to totally include him meaningfully in all aspects of the school day.

In a previous post I shared how Matt got to spend a morning in his new school. Following that visit we returned to his old school for the rest of the day. As we drove into the schools driveway I heard him in the back seat saying "Rushby, Rushby" - his teachers name. As soon as he got inside the school, I am told he bolted to find his teacher, stumbling over toys in his pathway in his haste to get to her. Once he reached her he hugged her tightly and would not leave her side for the rest of the day. Matt couldn't put into words what he was feeling, but part of me could relate. I too wanted to hold on to this safe, caring, embracing, accepting, fun, nurturing school. I also didn't want to let go and move on. It caused a physical ache in my heart, I can only think what Matt was feeling.

Sadly, moving on from Barkly House Harfield Road means that none of these precious relationships go with us, we have to start from scratch, building a new safe and nurturing environment in the new school. And that feel a bit like demolition!

I can't really remember Matt's last day of school. The emotions were just too overwhelming, it is all a blur. Now, a month has passed since that ending, I can accept the fact that we do need to keep moving forward.

But we shall always be grateful to the children who grew to really love Matt - I think of Gemma and Maya in particular but I know there were more. My heart is warmed by the memories of the parents who showed love to me. And I really don't know how to express my deep, deep thankfulness to Matt's teacher from 2012, Diane Moffatt; his teacher from 2013 Theresa Rushby; and to Romelia Duminy the teacher's assistant who kept a special watch over Matt for both years. The foundation these three ladies laid in Matt's life will last his lifetime.

Drummer Boy Matt

I think the reason I am sooo behind in my blogging is because the last three months of 2013 were really emotional for me, and Matt. Preparing to leave Matt's school Barkly House Harfield Road, despite the positive plans for his new school, was just hard. And so blogging was just avoided. And as I look over these photos (now with the distance of a month passed), I remember that constant knot in my stomach and the stinging tears lurking behind my eyes that seemed to dominate much of November and December.

 

But more of that in another post. Here are some fun pictures of Matt's role in the school's end of year Nativity Play. I love that all the children dress up and all the children participate in some way. The Grade Rs get to choose what part they wish to play, and Matt chose to be a drummer boy.

 

 

Matt and his partner drummer girl

 

Yes those Drummer Hats were big!

 

Matt's big moment: keeping the drum beat! Romelia sitting behind him reminding him to keep in time. Matt LOVES alternating fast beats with slow beats, and it took all his will power to keep the same pace.

Another favourite for Matt: doing song actions. I think it reminds him of his signing.

 The children all carefully filled off the stage and walked passed us to the changing rooms. As Matt neared where we were sitting, our little Nic couldn't contain his excitement and raced to hug Matt. Well it was more like a big, warm, rugby tackle due to the high levels of enthusiasm.

The shows over. Last photo before the costume comes off. Smiles all around!



Matt's new school

Still catching up on 2013 blogging: Also in November Matt was invited on a personal tour to his new school. Not a huge-crowd-orientation-day with loads of kids, just Matt and his teacher assistant from his current school (and me). He was shown around the school, got to meet his teacher and facilitator, and some of the grade 1's took him under their wing.

Matt meets the school animals...

This little boy next to Matt was in Matt's current school last year, so he remembers Matt. He sensed that Matt was feeling a bit overwhelmed by it all. Without prompting he showed such tenderness towards Matt.

These two boys spontaneously took Matt's hand to show him around the school. I was really touched by how eager they were to make Matt feel safe and at home.

 Matt being shown his classroom.

Matt's future teacher sitting with him whilst a grade 7 did reading with Matt. Once a week the grade 7s read to the grade 1s. Great role-modelling and mentoring opportunity. As Matt was visiting during this time he was included in the process. He really enjoyed it.

 Matt getting his shoes off: ready to get to work at the jungle gym.

 



Matt falling in love with the texture corner in the art room!

Meeting more of the "wildlife" at the school.

Matt's facilitator connecting with Matt over cars!

 

I'm not really sure how to end this post without gushing about how great I think Matt's new school is based on the effort that has been made by them to get to know Matt and to create opportunities for Matt to feel at home there. I am conscious that I wear rose-tinted spectacles - just because of their willingness to embrace Matt. And I guess time will tell if this school setting works for Matt. But I left this encounter feeling really hopeful about Matt's time there starting 2014.

Matt's Sports Day 2013

Some photos from Matt's School Sports Day in November.

 

Matt is on the on the far left. He had to run to the blue basin, fill a cup with water, head back to the start to pour it out, and then to the finish line. I think - I remember correctly.

Go Matt Go!

Almost at the finish line!

 

 

Matt and Gemma celebrating their medals.

 

Nic got to participate in the siblings race which he loved!!!

Appreciating Matt's Teachers

For teacher's appreciation day earlier this year in October (yes I am still behind in my blogging!), Matt and I put together this 6 minute video clip for his teacher Mrs Rushby, and his teacher's assistant, Romelia. There some fun sound clips where you can also hear how Matt's talking is slowly coming on.

Good bye Tonsils

In October Matt had his tonsils out (yes I am behind on my blogging!!!). Matt had been experiencing sleep apnea and so removing tonsils would help improve night time breathing. We have also been really concerned about Matt's persistent cough over the winter time, so during the op a pulmonologist did a scope of his lungs to check out if there were any concerns. 

Matt was quite excited to be in the hospital. He has learnt about doctors and nurses at school and loved greeting these professionals as they walked passed him. He also loved it when they wheeled his bed to theatre. It meant travelling through a number of passages and up in an elevator. Matt experienced it as a fun ride.

 

Once in theatre Matt became anxious and it was hard to hold him as he fought against receiving the sleeping gas. There is nothing quite as stark and lonely as walking away from one's unconscious child, leaving him in the hands of strangers.

 

Matt's operation went well. There was a short moment of panic as he was recovering, apparently his vocal chords went into spasm which made his breathing difficult. The anaesthetist had to intervene quickly and I am told managed it well. After what felt like many hours, but really only a couple, I was able to see my boy. He was kept in the high care for 24 hours just to monitor his breathing.

Still not awake. So vulnerable.

 

Keeping a very drowsy Matt company with lots of Dora stories.

 

Starting to feel much better. Love that first smile!

Lots of waiting, playing iPad...

More sleeping

Watching some TV which was on the ceiling.

 

We both had a fitful night sleep with nurses checking on him every hour, lots of beeping machines and too much light. Before Matt was released home the pulmonologist wanted to do a CT scan of his lungs just to check up some things she picked up in the scope. Once again Matt - much to his delight - was wheeled around the hospital. The CT scan, for those of you who have not had the joy, is shaped liked a giant circle which is in an upright position, and there is a bed which moves into the whole of this circle shape. As soon as Matt saw this contraption he queried "doughnut?" They struggled to get him to lie still enough so he needed to be sedated. Despite not being fully conscious Matt has vivid memories of this giant doughnut and often talks about it. Finally we could go home.

And what joy to be welcomed home by dad and Nic. I love this pic.