A look: contemplating inclusion

This post has been a long time coming. It's actually taken me 4 long years and 7 months! It´s been a process of maturing my ideas and thoughts and being finally able to express them. And this post is essentially about EYES and LOOKS.

Exactly 22 weeks into my pregnancy we discovered that there was a huge probability that our son Gabriel was going to be a special needs baby. I knew something was wrong immediately during the exam. The doctor who normally did the ultra-sound would't look me in the eyes and say anything. But I saw his eyes. They had a look of despair. And he passed us on to an "expert" used to giving such diagnosis. This doctor also didn´t look me in the eyes. But we were given several "options" as to what special needs Gabriel would have and no certainty about anything. This was the first time (and only time) that the phrase "not normal" was used about my son!  It was a cold, matter-of-fact usage of the term: "not normal", "not within the average mean"! My son had become a statistical incident!

My pregnancy ran it's natural course and Gabriel was born. My beautiful little boy was diagnosed as having Down Syndrome. We were sort of ready for this. We knew Gabriel would do things at a different pace from other children. And we celebrated all his little achievements a lot. I still remember the day my son looked at me for the first time and gave the most beautiful smile ever - what radiant eyes! What a cheeky little grin! He was 5 months old!

What we weren't ready for was the Infantile Epilepsy which wormed its way when Gabriel was 9 months old! It was another nine month battle to control about 50 fits per day. But thanks to two wonderful neurologists we finally controlled the fits. Gabriel emerged from a sleeping beauty-like lethargy! He awoke again in November 2007!

But you may be wondering what the title of this blog post has to do with anything I've written so far. What is the significance of a look? Whose look I'm I talking about? Who am I looking at? Who wasn't looking at me?

This is what has taken me so long to understand - the significance of a look.

A look always involves a two-way process. When we look at someone we expect to see something in their eyes by way of return. A sign of some sort of connection. And when we capture that sign, we read so much into it. A look at someone and a return of that look signals to us that we have been included. We are a part of something. We are connected.

Aged 5 months my son looked at me for the first time. Aged nine months Gabriel stopped looking at us or anything else. Infantile Epilepsy is a devastating thing - it cuts the child off from the world and from many sensorial experiences around them. In fact, these experiences are overwhelming for the child and they retreat into a world of their own. Gabriel stopped looking at us. He averted his eyes. He did not respond to his name. We were unsure if he heard us. I was certain he did not recognize me. There was no flicker of recognition in his eyes. Did he at least recognize my voice? Did he at least recognize my touch? I hoped so.

When you are not looked at, you loose the sense of belonging. You are no longer included. You become invisible. I felt excluded. I felt excluded from my son's life. Is it  such a silly thing to ask a child to look at his mum and dad and smile at them? It's not much to ask for, really. But, oh, how I longed for that look from Gabriel...

In the end of 2009 Gabriel began looking at us again. Gabriel began looking at the world around him. He began looking at the people around him. He very tentatively began looking at us with a sideways glance. This has now changed to a direct deep look into our eyes. His understanding of language is quite well developed, even though his own verbal communication is still limited to 6 words. And when we ask him something, he ever so cheekily looks at us and smiles through his eyes!

But the thing is that once Gabriel began looking at us, looking at me, it made me feel part of something again. It made me feel as if I belonged. It paved the way for me to look at my son from a new perspective. I felt included as a "mum".

And this issue of inclusion and being looked at made me consider quite critically the role of a school in the process of inclusion. School is about fostering communicative bonds within a small community. It´s all about two-way processes. So, how can a teacher foster these bonds when communication is one-sided? And what about the other children in class? How do they react to another child who doesn´t look at them or respond to them? How very difficult this situation can be when teachers aren´t fully trained for this. It does require a very special person, a very special teacher and very special class mates.

Gabriel started school early this year and I was full of doubts about it all. We agreed he would need a facilitator with him and the school did ask him only to go twice a week. I agreed to this as well. It was a new experience for the teachers and I liked the honesty with which they were trying to develop their work with Gabriel. People questioned me how far Gabriel was being "included" if the school wasn´t willing to take him in for the other days.

But the look of inclusion within mainstream schooling cannot limit itself to how many days a child goes to school. It´s a question of what he does in class, how and with whom. It´s a question of how the teachers look at Gabriel, at how the other kids see him and how these children´s parents see Gabriel as well. There are so many interconnecting looks. And it´s how Gabriel looks at them as well.

Having been at school for a term and going back for the new term, after the first week, Gabriel´s young facilitator (it´s her first teaching job since graduating and she´s doing splendidly) came up top me with a beaming look and she said: "Gabriel is a different boy this term. He used to look at me when I spoke to him but it was as if he was looking straight through me. It didn´t matter if it was me or someone else. But this week I discovered he is really looking at me, I can see it in his eyes. We are communicating. Now we´ll be able to do so much more..."

Yes, what a difference a look makes. His young teacher now also felt included and I am sure Gabriel´s inclusion in school will continue to go well. It´s a team of teachers and coordinators, trying their best to make Gabriel´s school experience every bit as rewarding for him as it is for the other children.

Quite frankly, this is what inclusion is about. They are looking at my son with a very special look.

And Gabriel, well, he couldn´t be happier!

He has his cheeky look back and his eyes beam joy.