Friday, April 15, 2016

Going beyond April

Today is April 15, that means Autism Awareness Month is halfway through and in a couple of weeks, the word "Autism" will start to fade on our computer and mobile screens and consequently, in the lives of many. I am not trying to be dramatic for effect, but it is the reality. Autism Awareness Month is indeed coming to an end and soon, most lives will be free from that concern. 

But there is one thing families with Autism know for a fact: we have Autism all year round, all the time. No expiry date in sight. It is a reality we have to live with. 

Following April 2nd, World Autism Awareness Day, all I could see on Facebook and Twitter were articles and blogs on Autism (which was amazing, emotional and inspiring all at once). I found myself scrolling frantically, attempting to filter those I thought were really worth sharing without spamming the friends who followed my posts on social media. Inevitably, I ended up jamming a million posts in only a couple of days and naturally, as time passed, fewer articles were showing and I had to actually search for new ones to be able to share at least one story a day.

So how do we keep the momentum going? 

How do we continue educating others and bettering society for all of us, not just the families affected by Autism?

An open-mind, an open heart
First and foremost we learn Empathy and we teach it. Just like any other skill, it can be taught, it can be learnt and it can be perfected. There is nothing weird about that, really. Ideally, humans should be able to feel with their peers and other creatures and know right from wrong. We expect these abilities to be innate. They really are not. Growing and bettering one's soul is just the same as developing our physical and intellectual competences. If good health implies a healthy mind in a healthy body, then Empathy is an exercise for the soul equally important to workouts that keep our bodies fit or intellectual stimulation and challenges that keep our minds sharp. We must seek it. We must enforce it. We must practice it. Being a responsible human being implies so much and it is not easy but it is a must. Responsibility towards our Earth, our peers and all living creatures will ensure our survival on this planet. We need to understand we are all connected and the pain of one is the pain of us all. Or at least it should be. In this way, ignoring others is betraying one's self and solidarity with one is solidarity with all, and with one's self. I am not speaking of religions or spirituality here (not that there is anything wrong with that) and nurturing one's soul is not a distant abstract concept. Empathy is real and universal to all.

Less judging, more acting
The ability to understand and share another person's pain is commendable but it is not enough. We must act too. So when we see a child (or an adult for that matter) literally exploding in one of those terrifying tantrums, or suddenly running away for no apparent reason, or expressing violence towards another or himself, let us refrain from judging. I hear it too often here in Dubai: "kids in this country are spoiled and their parents are not doing their job and setting boundaries". That is so unfair and absolutely not true on so many levels. Each human being is a different independent person. Children are not robots. The assumption that because a child is acting out of societal norms, it automatically means parents have failed and that child is "bad" is outrageous. Let us spare ourselves and others the waste of time that is blame. It is not conductive to positive change or constructive efforts. It simply dumps responsibility on others so we do not have to bother ourselves with the burden. But that burden is ours, all of us. Society is ours. And when society outcasts people because of their differences, it makes it harder for those individuals or families to help themselves. However, when we all feel it is our role to act and try to rectify a certain situation for the better, then things start to fall into place naturally and everyone's lives become easier. Condemnation and vilification are easy. Involvement on the other hand, is much trickier. Be present and be involved. For your own sake and that of others.  

Being involved and transforming our society into one that is more accepting and open-minded will lead to better integration of all its members. As parents of children with Special Needs, we are always actively looking for organizations and institutions that offer inclusive programs and policies. In academia, in sports, in arts. In Dubai, it is illegal for schools to reject students because they have special needs. That does not mean that it does not happen. But as parents you think, why would I want to force a school to accept my child when I know too well that they refuse to help him? Luckily we also have a wide array of mainstream nurseries and schools that offer integration within certain frameworks like shadow teachers assisting on site. That is definitely a blessing, but a costly one. Therapy, shadowing and schools tuitions are not covered by insurances and it can get quite expensive, very quickly. In my humble opinion, I think all institutions, public and private should be inclusive. It should be done in a proper way so that the child with special needs, the classmates and the school's staff and faculty all feel comfortable and can build, teach and learn efficiently. Ultimately, schools are like micro-societies where children learn how to behave within their communities. It is how they grow to become well adjusted, functioning adults. If we want our children with Autism or other special needs to be able to live happily as adults, they need to experience these micro-societies too and they need to learn how to navigate social situations. This understanding of communal behavior can only come from exposure to others. 

Special Needs Centers
Sometimes, special needs and disabilities can make integration difficult. Some children might pose dangers to themselves or to others and they need to be cared for by experts within specialized, safe environments where understanding and help are constants. These options are wonderful and allow children and even adults to discover talents and hobbies they enjoy and maybe even build skills that can lead them to become a little bit more independent, be it for daily tasks like eating or using the bathroom to more complex abilities like achieving a certain financial autonomy (some institutions even secure jobs and placements within suitable workplaces that welcome special needs). In that way, special needs centers are admirable. However, we need to always be careful and make sure the organizations we choose are indeed providing all of the above and more. 

And as a society we need to remember that these centers are not an easy way to alleviate guilt and relieve ourselves from responsibility. It is not because these centers provide a safe, constructive environment to people with special needs that we are no longer responsible for being supportive in mainstream places and situations. 

Special needs are not annoyances that interrupts our daily lives. The solution is not to just place these people in specialized centers. They spend a great deal of their day there but at the end of the day, they get out to the "outside world" and they have to face, well, us. 

Special needs are realities of our daily lives. We cannot dismiss them. We cannot avoid them. We must learn to open up to them and to the wonderful array of possibilities and potential they can bring to our world. 

This is how we go beyond April. This is how we push further than just a single month a year. Educating, raising awareness and dedicating a day or a month is truly commendable but it is only a stepping stone to inspire, stimulate and cultivate new ways of thinking and acting and hopefully on the long run, create new policies and behaviors. 

This testimonial was written for Mums Like Us.

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