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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.

 

 

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.

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.

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.

Matt is celebrated at school

This fun celebration of Matt happened at the end of last term - in September. I forgot all about these pics - just found them today. Better late than never.

 

The tradition at Matt's school is for the birthday child to bring cake to share with classmates. Matt decided we should bring red cupcakes.

 No comments needed on these photos as Matt's facial expression in each one just says it all.

 

Oh and in case you wonder if this is the usual dress of staff and kids. Being the last day of the term is was a fancy dress day. (I love how the teachers also get all dressed up - shows their fun sense of humour and dedication)

 

 

A big thanks to Romelia (a special lady from the school who takes a VERY special interest Matt's learning) for the photos.

Matt's Drum Party

It all started with a leisurely hammock moment...

 

 

 

 

Then we got into the drum theme by making our own drums

 

 

The cute recycled drum were soon overshadowed by the REAL thing

 

 

 

 

 

 

Then the drum version of Happy Birthday

 

 

 

Matt soaking in the after glow of the drum rhythms

 

And then of course, the drum cake...

 

 

 

 

To end off, some energetic obstacle courses and games...

And last but not least, the much loved game of Duck Duck Goose?

 

Happy Birthday Matt - You're 7 years old!