The first thing Nicholas said to me was, “I want to go toilet” but before I could lead him away from the group, a young volunteer named Sean had jumped up and said he will take Nicholas. And Dr Choy Sook Kuen, co-founder of Oasis Place, stopped me from following them saying, “Mum, you stay, they know what to do” and I was propelled back to my seat at the closing ceremony of Malaysia Day Boot Camp 2017.
The camp was from 8.30am to 4.30pm and one of the things I am always worried about is toileting as Nicholas has a good digestive system and will need to go to toilet a few hours after a meal. In addition to that is his routine is to have a shower and change of clothes. Camp Leader, Sherrene had told me not to worry but of course I worried because I did not want any unseemly or inappropriate incidents to happen.
This is the thing. Many times, I worry that my son will create or cause situations that lead to disruptions, tensions or even chaos. These incidents would become unnerving and stressful when people expect you to resolve the situations quickly by sending baleful stares in your direction. People often miss the anxiety and desperation of the mother trying to calm her child/young adult with disabilities. The worst part is that, the parent’s stress will affect ( usually negatively ) the behaviour of the child.
So despite the assurance, I crept off to check on Nicholas when nobody was watching. At the toilet door, an Oasis staff, Joel was standing guard and told me all is fine and that my son is having his shower. Greatly reassured, I walked back to rejoin the fun of the closing ceremony.
As I listened to the timeline of the activities, I was glad that I had signed up Nicholas for the Boot Camp because it would have been very difficult for me to arrange for such a diversity of young people, from scouts to college and university students as well as staff of Oasis to interact with or to create an environment for him to participate as closely as possible with people around his age group.
When the scouts and volunteers were asked to say something about the Boot Camp, it was gratifying to listen to young voices saying that they learned something new about people with learning disabilities, or that it has changed their perception and when Sean, the young volunteer from my son’s team declared that he has made two new friends, naming Nicholas as one of them, I was truly gladdened because my son has never been called a friend before.
I guess there was real camaraderie in the team because they won the Cookarama or cooking challenge.
I also reflected on my last meeting with Cecilia Koester, the author of Movement Based Learning and Brain Gym for Special Needs. She met Nicholas and asked me about my plans for him. My mind was running through a whole list of things which I wanted to do when she suggested that I get him a buddy. I put on my best poker face because I could not think of anyone who would want to be Nicholas’ buddy. In my mind, I thought it was next to impossible.
So when a friend suggested the Boot Camp, I was quick to agree. Of course it helped that the fee was not too exorbitant.
Actually, I had thought about the buddy programme, having read about it a long while back. Studies done on Peer Buddy Programme in American high schools showed that there was positive impact on social and academic achievement of students with learning and behavioural disabilities. They also developed a more positive outlook on life.
There is also an international non-profit organisation called “Best Buddies” whose mission is to establish “a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities (IDD)”, (https://www.bestbuddies.org/what-we-do/mission-vision-goals/). I never got down to enquiring further because I felt that Nicholas was not ready yet but I just put through an enquiry while writing this article.
Nicholas, at 21 still seeks my or someone in authority’s approval before he would do anything, from a simple thing like choosing the colour of his T-shirt to eating a piece of cake. Sounds like a compliant strategy gone wrong.
We, his parents, are working to increase his level of self-confidence and self-esteem and one of the best ways, I believe, is in having social activities with a group of near-age people. It is important that he learns from his peers through experience and social interaction, about things like communication skills, social norms and acceptable behaviors in society; as these would really help him ease into his sense of self and identity more naturally and with greater effectiveness. The Boot Camp delivered on creating a platform that supports inclusivity for people with disabilities .
However, this one-off camp experience will not be enough. I guessed that Nicholas had enjoyed himself and this experience would be stored in his memory but this memory would not enable him to practice the art of friendship, team work or appropriate communication.
Nicholas would need repetitive experiences and clues from his peers to develop and anchor in the pattern of behaviour needed to function appropriately within different environments.
I applaud Oasis for organising this camp and grateful to all the young volunteers and scouts who were there to support the group.
Now, to go and look for some buddies for Nicholas.
A friend is someone who gives you total freedom to be yourself. — Jim Morrison
Cover pic is of Nicholas (second from left) and his team who won the cooking challenge, Cookarama. All pix courtesy of Dr Choy Sook Kuen unless otherwise stated.