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.