Thursday, April 14, 2016

A call to parents of children with special needs!

It’s not the first time I have felt apologetic, almost embarrassed in front of  parents of special needs children who have very limited or almost no access to expert therapists and therapeutic resources in their countries, whether due to lack of provision or affordability, whereas I have had easy access and the means to both for my son Moeez who was diagnosed with autism at the age of three.  Mo is lucky to have been treated by top therapists in Singapore, where I moved to from Pakistan, just before he was diagnosed. He is now studying in a specialist school in England. God has been kind and munificent beyond words and I can not thank him enough!

However, when I go around extolling the virtues of one intervention over the other, emphasising urgency and consistency, I wonder at the utility of my words when a parent turns around and asks me helplessly, “what do I when there are barely any resources available in my country to diagnose and treat my child? What little is available is so expensive that it is out of the reach of most except a privileged few. Where do I go? How can I help  my child?

I often find myself grappling with advise for the justifiably frustrated parent, who is battling an ignorant and discompassionate society,  schools that cater to only ‘normal’ children, a severe dearth if not abscense of  experts to treat and diagnose most developmental issues and special needs. Really… what does one say to a parent whose child is suffering in the ‘here and now’ and does not have the luxury of time to wait for the day that things will change and the situation will get better?

This April during my visit to Lahore, Pakistan, a country lacking severly in resources for special needs individuals,  once again I encountered this dilemma. What could I tell parents who were not as lucky as I was to move to Singapore just as my son was diagnosed with autism? Reflecting upon the situation I put together my thoughts in the following ideas which may be of some help to struggling families:

Expose and disclose

In my opinion the biggest disrevice that we can do to our special children is to isolate them from society. Not only do we deprive them from opportunities to learn from others, we also contribute to the ignorance of people from all sorts of special needs be it dyslexia or Down’s syndrome or autism and so on. Hence:
·      Take your child everywhere that you would your regular children.
·      Do not make excuses for your child’s different behaviour instead explain to others why he/she behaves or not in a certain way. Stop hiding yourself and your children!
·      Form social skills groups with siblings of special needs children.
·      Invite a special need child to play with your regular child and vice versa.

Educate and advocate

There is no moving ahead if we do not understand what it is that we are dealing with. Therefore, thoroughly research your child’s condition. Most of us have access to the internet if not to actual physical resources. Read and research treatments, therapies, latest developments and more importantly share this information with others. Not just with other parents in similar situations but with your family and beyond. Also make presentations in mainstream schools and do talks in social gatherings. Make others listen!

Learn and train

·      Take online courses to educate yourself and others.
·      Connect to international experts and try to get them to conduct workshops in your country.
·      Create a forum  to collect funds for training yourself and other dedicated individuals.
Most autism resource centres are created and run by a groups of concerned parents and are excellent resources for others.

This is just a start of course but it is critical because a few very significant things will happen. You would have created a united front with others in a similar situation. You will learn from others and draw inspiration from each other. Not only will you push each other to action for change but also provide emotional and perhaps financial support that you or the other individual may need.

This April, in Lahore, I held a book reading in a centre that provides therapy to special children. I read from my memoir ‘Wrapped in Blue’ where I talked about my son, his autism and our journey together. Of the 70 plus guests at the talk,  barely any parents of the children who avail services at the centre came to the talk.

I was told by Mo’s therapist once, “we can only do 20% of the work for your child, the rest is up to you”! Ladies and gentlemen, the choice is yours!

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