Thursday, December 27, 2012

Monday, December 10, 2012

Our little shepherd

Matt's school year ended with a nativity play. He was a shepherd and totally LOVED it. He was enamoured by the singing. Followed along with the actions. Didn't seem to mind having wearing the shepherd head covering. I was a little nervous about how we would find the whole event. What a joy it was watching his delight and participation.


Thursday, November 8, 2012

Toilet Training Update #5

We have been on this toilet training journey since December 2010. Matt has been out of nappies for a long while now, and we keep him dry because we take him regularly to the toilet. He would not tell us when he needed to urinate. And if we didn't take him he would have an accident.

But this week something has clicked for him - twice he has come to tell me that he needs to go, and twice he has gone all by himself at the toilet! Doing the whole routine of lifting the toilet seat, pants down, weeing, pants up, flushing etc all on his own. So chuffed with him.

Wednesday, October 31, 2012

Matt's shining moment

Matt, caught up in the the drumming beat, his little hands keeping pace, he is at home.

He, who normally is conscious of people around him, didn't seem to mind the crowd of people who were watching him. Maybe he sensed, what I sensed, that most people were totally enamoured by him and his drumming.
We were attending a fundraising luncheon held in aid of the NGO where I volunteer. The venue was our church hall, where Matt is well at ease. The programme included this interactive drumming session, where audience participation was welcomed and encouraged. As soon as the drumming started, I turned to Matt intending to ask him if he wanted to join in. But he was already on his way up. Drawn by the music. The drumming instructor is a friend of ours and knows Matt. He quickly included Matt into the drumming circle as you can see. And Matt's little hands added a unique rhythm the melodic beat. Matt attends a drumming class every week after school which has clearly increased his confidence, ability and passion for drumming.  
The camera doesn't quite pick it up, but I was almost certain that Matt was shining.  

Sunday, October 28, 2012

Happy Birthday Matt - belated

I have had difficulty uploading photos onto blogger for a while, but finally I seemed to have found a solution. Here are photos from Matt's 6 Year Birthday Party - which actually took place in early October.
In keeping with Matt's love for Toy Story we had a Woody Party for his birthday. We kept it small, simple and brimming with games that Matt enjoys.
A home-made present from Jude - check out more about this boy and this gift here.

Lloyd's dad - who lives in Howick - was fortunately visiting Cape Town and joined in the birthday festivities.

Matt's great anticipation and attention -watching as Lloyd gets everyone excited about the party and the forthcoming activities...lots of yeehaa-ing and howdy-ing
Duck-Duck-Goose - one of Matt's favourite games
Find-The-Toy-Soldiers, they're hiding in the bushes.
A fun trampoline game that Lloyd invented
Build-a-Potato-Head game followed closely by...
Waterballoon-the-Potato-Heads game

Pass-the-Parcel, or in Matt's case, Pelt-the-Parcel to the next person.

Squirt-the-Cups-Over game - try knock over the cups. And yes, little Nic is shooting water in his own face.

Drumming-Whilst-Being-A-Strange-Animal game

Cooperative-Puzzle-Building, a bit challenging for 5 year olds who all want to do it by themselves!
And finally - the most exciting thing about birthdays for Matt - the Happy Birthday Song
Followed by Matt's 2nd most favourite brithday thing - cupcakes
And to finish off a wonderful time of play and eating,
our now 6-year old decided a drum solo was required
Happy Birthday to our precious Matt

Matt's 1st Sports Day

Matt surprised me once again - he walked around a field 6 times! On our family walks he usually asks to be carried after a little while, and much persuasion is required to keep him walking. I was doubtful if he would want to participate in his schools sports day walk - but with a friendly hand from Romelia, and stops along the way to be rewarded with snacks, juice and a stamp at the completion of each round, Matt conquored!


Both Lloyd and I were a little emotional watching Matt participate in the potato-and-spoon race. Matt loves the "on your marks, get set and go" part of races. We could see he was rearing to go. Soon as the whistle blew he was off. Quickly he decided that holding the potato on the spoon was way too cumbersome, and threw the potato to one side, clutched the spoon tightly and ran as fast as he could to the finish line. We were all so thrilled at his mighty effort, that we totally forgot to take a photo of him with his medal. (I love this school - all the kids get a medal for participation)

Go Matt!!!

Saturday, October 6, 2012

Through a Friend's Eyes

One of Matt's friends mom, Sharon, posted this beautiful perspective on her son's friendship with Matt. It really touched my heart, seeing Matt through her eyes, and her son, Jude's eyes. I often get so caught up in my view of Matt, it is refreshing to see him, and what inclusive education means from another angle.

Click here to check it out: A Friend Called Matt

Friday, September 28, 2012

a world of difference

I still marvel at the opportunity that I have been given to contribute my thoughts to a local magazine regarding my journey with Matt. Here is my latest article.

Tuesday, September 11, 2012

Our own Woody

Matt's school had a Dress Up Day today. Matt hasn't shown much interest in fantasy or dress-up. But we really got into it and here he is before school this morning, ready for the fun to begin. I thought he would have undressed (his favourite sport) as soon as the hype wore off, but at the end of the school day he was still mostly in his outfit - minus hat and scarf. His teacher said he was super excited all day. 

Saturday, September 8, 2012

The trampoline

A new arrival in our home - the trampoline. It took some serious tree removal to create some space in our small garden. Matt's OT has been encouraging us for a while to get one for Matt; and it has been so worth it. It has become Matt's safe space, his joyful place, his centering place, his calming place and his just-for-fun place.

And a place of bonding for his dad and brother too. Most of the time they do jump on it, as opposed to what you see below. This was a special moment when they were all enamoured by a helicopter flying over head.

Thursday, August 23, 2012

I stand in the doorway

I was asked by a South African NGO called SAALED, the South African Association for Learning and Educational Differences, to write an article on my perspective as a parent on pursuing inclusive education for Matt. This will be for their newsletter.

Here is what I submitted:

I stand in the doorway, my eyes moist. I watch Matt and Maya jumping on the mattress. Squeals of joy pierce the air. Not an unusual sight for most parents, but for me I am witnessing a miracle. Something I didn’t dare think was possible: Matt has an authentic friendship.


When Matt was born 5 years ago, it was immediately clear that he had a genetic syndrome and soon words like mental retardation and speech delay were thrown at us. The immediate medical and feeding issues made things like schooling and friendship part of a list of things Matt would not likely achieve. Watching Matt and Maya flop tiredly to the floor, their laugher spilling from their mouths, made my heart swell. I really didn’t think this would be possible.


I remember Matt’s first day of pre-primary school clearly. Sitting with him in the lego corner, I really should have been more focussed on him and settling him in. But I found myself staring at the other children; they were so able, so normal. Matt seemed so weird and different in comparison. And so delayed. Though I had celebrated that fact that he had made it so far in his short life, I sat there on that fuzzy play mat, wondering if he would ever fit in, would he cope, would the other children want to be his friend.


And here I am in the doorway, close enough to keep an eye but not wanting to intrude, witnessing just such a friendship unfold.  I watch as Maya talks to Matt. This is a new thing for me to see. Usually kids use me as a mediator when trying to communicate with him. I understand why they do that, his speech is delayed and it is easy to assume he cannot understand or respond. The children are fascinated by his signing, but as they don’t know what it means, still require me to facilitate the interaction. Maya doesn’t get stressed if Matt doesn’t respond, but she is delighted when she does. She really “gets” him, and seems to like him just as he is.


And in so doing Maya is affirming something that I really had to work hard to embrace this year as Matt started in a mainstream setting. I almost became obsessed with how different he was. I panicked, thinking he wouldn’t fit in. I had all these elaborate plans of how I could do extra work with him in the afternoons to help him catch up and seem a little less abnormal.  It was emotional torture, because anyone who has a child with special needs knows, that no matter how hard you try, you can’t make them all better.  I needed to realise that the whole point of inclusion is not that I make Matt fit into a mainstream setting. Rather it is about recognising that he is different, and looking at what changes can be made to the way things are done in the school to allow him to participate fully, to belong, and to keep growing and learning at his pace. In my heart, I had to learn to accept all of him – not just the bits that made him more “normal”. As I watched Matt and Maya giggling at some silly joke that only the two of them shared, I saw that this is exactly what Maya was doing, appreciating all of him.


I can’t give all the credit to Maya, though she is a remarkable young girl. The principal of the school is motivated to make inclusion work, saying “every child deserves a chance to be educated.” She has worked to create a school environment which allows children with Matt’s challenges to participate alongside their typically developing peers. Matt’s school teacher and teacher assistant have really embraced Matt. They took their time to get to know and understand him. They met with me regularly, giving me feedback on how he was doing, chatting through how they could better to support him, looking specifically at how they needed to do things differently in the classroom and playground.  


At the end of the second term my husband did the whole meet-the-teacher-to-get-the-report thing. After hearing all about Matt’s progress and challenges, he asked Matt’s teacher how she was coping with Matt in her class. Her reply literally brought tears to his eyes as she shared how she couldn’t imagine her class without Matt, and that most days one of the children come to her sharing how much they like Matt. My husband had been living with the heaviness of thinking that the school was doing us such a favour of taking Matt because surely Matt must be adding strain to their environment. As the teacher described her fondness for Matt he realised that Matt was bringing something precious to his teacher, classroom and peers. This is a very moving thing for a parent of any child, especially those of us who parent children that are so easily labelled as demanding resources without adding value.


One day I was sitting with Matt in the sandpit. I was appreciating how comfortable he was in the sand having been so texture-defensive for most of his life. In his exuberance Matt happened to splash some sand towards another child who was most offended. Before I could open my mouth one of Matt’s classmates came rushing up to explain Matt to the sand-coated girl. “Don’t be cross with him. He is just learning, he didn’t mean it.” In her words I heard the echo of Matt’s teacher who had found the balance between  making too-big-a-deal  about Matt’s differences and the other extreme of not explaining Matt at all. His teacher has also invited me to teach her class Matt’s signs, which has increased their respect for Matt’s communication skills. Matt is allowed to use his iPad as a communication device during show-and-tell, which demonstrates his cognitive abilities that are often hidden by his speech difficulties. These initiatives have combined to help Matt’s peers to understand him and recognise that he can contribute, although he does things differently.  This has created a helpful context in which children can build authentic friendship with Matt.


Matt’s teacher tells me that Matt is as good for Maya as she is for him. I smile as I contemplate this, still standing quietly at the doorway, marvelling at this friendship that has been developed outside of my intervention or control. Something Matt and Maya created on their own. This is the great reward of inclusion.

I am not under any illusion that there won’t be challenges ahead. I also can’t say how long inclusion will work for Matt. But I remain hopeful that as long as there are principals and teachers who see the benefits of inclusion for everyone involved, that I will be able to work with them to create an environment where Matt can belong, contribute and grow.

Wednesday, August 22, 2012

More Winter Adventures

 Matt was terrified of running down this very, very tall sand dune. All the other kids had had a whale of a time sliding, rolling and crashing down the sand. Then Daddy came to take his hand, and this gave Matt the courage to mostly jump down the slope - and his laughter filled the air as he realised it wasn't so scary after all.

I love this one of Matt waving at me - I was standing a fair distance away from him. He was running in between these beautiful purple flowered sand dunes. He stopped suddenly, looked for where I was, gave me a ear-to-ear grin before offering a enthusiastic wave.

Sunday, August 19, 2012

Winter Adventures

Catching up on our blogging.
 Here are some pics of what Matt has been getting up to these last two months or so.

For some reason Blogger won't let me upload more pics, so that is all for now. Hopefully I can get more uploaded next week.