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.

http://www.childmag.co.za/content/world-difference

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. 

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.

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.

 

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.

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. 

Matt's friend

During these winter holidays I have arranged a few playdates with Matt's school friends. Matt has been interested in these visitors although a little reserved. In all honestly most of these friends are invited because I have gotten to know the mothers and it has been easy to make the arrangements. They may not be the ones Matt would have chosen. Matt hasn't really communicated a preference for a particular child. So I have been left to my own discernment

What has been most special is that one girl in Matt's class initiated a visit. She reportedly begged her mom for a playdate with Matt. And her mother heard and responded. So Matt and Maya had their playdate last week at our place. Maya was brimming with excitement to see Matt's play area and his room and his toys. But was most touching for me was the way she was just thrilled to spend time with Matt. I can see that she "gets him" and I don't have to explain him to her. In fact most of the time she was explaining him to me. And she talks to him. Not relying on me in the communication. And she is not perturbed if he doesn't really answer her, but is delighted when he does.

It was quite marvellous for me to meet Matt's friend. A friend who he had found on his own, without his mother being there to mediate or explain. A friend who really sees him for who he is and thinks he is wonderful.

Sunny winters day at the beach

I remember when Matt would scream at the sounds of waves, cling to me harder than a limpet when I tried to put him on the nasty sand, and shrivel up in protest should cold water slightly touch his feet (or hands for that matter). In the first few years of his existence the beach was a place of torture; now it is a place of play and exploration. Though that chilly water still remains uninviting, he is not afraid to test it out. I love thinking back and seeing how far we have come.

Check out the photos from this past weekend when we visited my parents who live really close to the beach. It was a sunny day, but being the middle of winter it was still cold.

From the mouths of children #4

"Matt is a prince" Matt's teacher told me today that often she has some of the girls in Matt's class come up to her and tell her that Matt is a prince, usually accompanied with an expression of how much they like him.

Matt loves watching waves

Matt REALLY loves his boots

Good Different

As I am learning to Celebrate Difference, I have come to realise that being different can be good and it can be bad. Good Different is attractive because it is different, it breaks free from the norm, it is not bound by fear of what others think, it can lead to new perspectives, new ideas, even new and better ways of doing life. Good Different can have friends, can have a place of belonging, can know love, and can make a meaningful and marvellous contribution to this small planet on which we live.

Being different doesn't automatically mean being rejected, lonely and left out.

This is helpful to remember.

Occupational Therapy

Matt has been seeing more of his Occupational Therapist these last few months. Previously we would meet with the OT once a year or so, she would assess Matt and recommend activities we could be doing in the home with him. This year she is helping him with some of his sensory issues and also the use of his hands. Check out some of the fun things they get up to in a session.

 Start off with a quick sensory brush

 Then some hand pushing

 Every session has a theme based on Matt's interest - today it was trains.

  

 Matt loving pretending to ride the train on the gym ball.

 Train puzzles

 Using the puzzle for some help with drawing.

 Let's read a train book

  

 And Matt's all time favourite thing - hanging out, bouncing and swinging in this very interesting, stretchy-fabric hammock. Great sensory input for Matt. He can't get enough

 

 Then some more drawing - this time on the mirror.

And to end, let's clean up. Spray, wipe the drawing off of the mirror.

Celebrating Difference

One evening not so long ago, I am sitting with two good friends who are praying for me. I hadn't mentioned to them my wrestling with Matt being different as described in my previous post. The one shares with me that she feels God has put it on her heart to tell me to celebrate Matt's differences, to dare to be different and see all the positive things that his differences are bringing to our lives.
It was a very spiritual moment, I just knew God was speaking to me through her, although I was rather surprised at the message. At first I fought with God - how can he expect me to embrace the differences I see in Matt. Over the days that followed I reflected on this invitation to celebrate Matt's differences.

Throughout Matt's life we have been doing a lot of celebrating. Every tiny step forward has been received with joy and party. Yet I realised that what we had been celebrating was not the ways that Matt is different, rather the small steps he was taking to become less different. We had been rejoicing in every achievement that would make him fit in and be the same. I am not saying that celebrating milestones reached is a bad thing, on the contrary, that is what got us through these last 5 years. But the invitation here is to celebrate more than just the victories, to celebrate all of Matt. And to celebrate the experiences, people and things that Matt's differences bring into our lives.

This is a huge change in perspective for me. I am still getting used to looking through this new set of glasses. These days, as I am standing in Matt's classroom about to kiss him goodbye, I sense the Holy Spirit nudging me to look around me with my new eyes. I am being trained to focus on all they ways in which Matt's differences are bringing something valuable to the other kids and his teacher.

What I am seeing with these new eyes is very healing.

Being different is hard

I am not there yet. I am no where near being ok with Matt's differences.

I guess this isn't really the politically correct thing to say,  but it is my reality in this season. I have been wrestling with this issue since Matt started school this year. I blogged about it a few months back, where I thought I had worked through it. Recently I wrote an article for a non-profit that helps parents who want to mainstream their child with learning needs, here too I shared my difficulty watching Matt being different to his peers at school.

Clearly I need to grapple with it on a deeper level because right now my honest feeling is that being different sucks. I have this overwhelming desire for Matt to be like others...to make friends, to be able to share with me about his day, to tell me why he starts sobbing unless his dad or I sit with him until he falls asleep, to engage with other children without being so physical, to be out of nappies at night, and, and.

I have never considered myself to be a follow-the-crowd type of person, rather I see myself as an independent thinker, someone who doesn't just buy an outfit because it is fashion, someone who is confident enough to question the status quo. So it surprises me that I am longing for Matt to be normal. I must clarify, that I don't feel embarressed by Matt - I am happy to take him shopping, enrole him in community activities, and include him in our church and with friends. It is not that I am ashamed of him.

I have been seeking the root of my struggles and I think my difficulty is in part because my relationship with him is not as close as it might be if he could pour out his heart to me. I watch other kids interacting with their parents and my heart aches for that. Despite his blossoming speech, and despite the iPad communication device, there is still so much of his thinking to which I don't have access.

Also I think I am really scared that others won't like him because he is different. And that he will be lonely. My heart ices over at the thought of him being without friend one day - just surrounded by people who are paid to be in his life. I find it hard to believe that Matt will have a place of belonging and acceptance in a society that honours "the normal" and where people invest time and money to be IN so they won't be OUT. I see his differences and it feels like they are a passport to loneliness.

A couple of weeks ago, in the midst of my wrestling, I had an intriguing encounter that has stopped me in my tracks, and that has offered me hope...maybe I can make friends with Being Different. But more about that in the next post.

Matt's Easter - photos

Brothers in the Bath