Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.
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
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
betweenmaking 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.
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.