Friday, February 13, 2015

A Door to Advocacy and Leadership for Asperger’s and a Special Kind of Fame

This is a re-post of an article from September 2010 for "SOS Research Blog" which was on a site which no longer exists. The SOS project eventually became Special-Ism which is a site maintained by a group of bloggers to provide insights into support for children with special needs. This post has been lightly edited from the original content.

You can read all of my Special-Ism articles on their site here.

You can also download a free eBook (Volume 1 of my collected posts), from Google Books or directly in ePub, PDF or mobi Formats.

 - Gavin Bollard January 2015.

This post is part of the series titled “When One Door Closes, Another Door Opens,” where people reveal how their paths have changed since a child with special needs has entered their lives.
~Danette Schott (SOS Research Blog)

We all have closed doors.

I grew up being told by supportive grandparents that I’d be something special someday. They bandied around with ridiculous job titles such as “Prime Minister” even though I've never shown any interest in politics. Gullibly, I believed them. When my good grades and general performance didn't attract attention, I merely assumed that eventually it would. Eventually my famous destiny would come calling. 

I’m still waiting.

As time went on, I realised that I was getting too old to make major breakthroughs. I began to pin my hopes on my children being famous and then suddenly, out of the blue, special needs slammed that door shut completely. First one son was diagnosed with Asperger’s, Attention Deficit Hyperactivity Disorder-I (ADHD-I) and Nonverbal Learning Disorder (NVLD), then the other received high-functioning autism (HFA).

It was difficult coming to terms with the fact that both of my offspring had limitations on them. I’d often cited my own deafness as the target of blame for my mediocre career and now suddenly, my children were having their futures taken away.

I could have given up then. I’m sure I considered it for a time.

As I began trying to get to the root of my children’s “problem” in my need to understand everything about it, I was unaware of the transformation taking place. The more time I spent researching my son’s condition, the more I learnt about myself. Eventually it became clear that I shared my son’s condition (Asperger’s) and more importantly, I discovered that I’d thrived with it.

Far from being a limiting factor in my life, Asperger’s has made me who I am. I have a right to be proud of my accomplishments. As for fame… well, fame really just isn't important.

I stopped thinking about my failure to achieve impossible things. They were never actually dreams or ambitions of mine after all. Instead I began to look at how I was changing as a person. How I was becoming more accepting, more knowledgeable and more a part of my children’s lives. I began to see that these small successes were far more important than my “greater failures”. As I began to accept myself, so too, I began to accept my children for who they are.

These days, I do a lot of things with my children but I also find myself looking out for other unlikely heroes too. I'm trying, via advocacy, to bring a greater understanding of Asperger’s Syndrome to the world – and I think I'm succeeding. This time, I'm not trying to do things alone but in concert with hundreds of bloggers around the world. It’s not about fame, it’s about helping – and it’s about being a part of something great.

When the door to more traditional extra-curricular activities, such as soccer, was closed to my children, I sought an alternative. It was scouts. Instead of having training nights and Saturdays which are focused on the need to keep running constantly – something my children have problems with. They now have a huge variety of activities. Every night is different.

I followed my children through the door which had opened. By becoming a scout leader, I was able to help them keep up. I began to see the differences between my children and the group and I began to work on reducing the social impact of those differences. At the same time, I discovered other children in the group who could use a little help.

During my time as a cub scout leader, I made a difference to the lives of many children. There was always a place for special needs children in my pack. We actually had “differently-abled” nights where my pack got to learn about how differences can make life difficult for some people – and how their actions can help to make their lives more enjoyable.

It’s more than simple understanding and acceptance though. I would reward cubs in my pack when I saw them helping others and it always brought a tear to my eye when one jumped up and run over to help another who obviously could use some assistance.

Acceptance starts with the self and my children accept themselves for who they are. They accept others for themselves too. Their limitations no longer confine them, they simply point the way towards other doors ... the open doors.

One day, maybe one of my kids will become something famous but for the moment, they are all already something great - and that's enough for me. 

1 comment:

Miguel Palacio said...

Thank you for reposting this.

Fame can be a curse to some people too. I too would opt for success, without the fame.

And I totally agree: The more you're understanding of yourself, the more forgiving you are of others. I used to be quite unyielding with others, but I have simmered down quite a bit and continue to do so the more and more I know about myself.

I think also sometimes we are blinded by the apparent deficits that we can't see some of the positive attributes. I also see as the deficits are overcome, the positive attributes start to shine through.

The way I see it is if I can do what I can to best overcome my shortcomings and help others overcome theirs this also multiplies the number of doors that open.

It's like how to help ourselves and each other go from special to even more special, in a way that contributes to a better understanding and our own fulfillment as well as that for society.