Monday, April 04, 2016

Published Monday, April 04, 2016 by

Reflecting on watching the A Word (Ep 2)





Following on from watching the first episode of The A Word, I was keen to see how the story developed and how I would feel about the developments in the story.

This week we saw the family reacting to the diagnosis, and working out what is means for the young boy and themselves. Once again I found myself relating to the story, and reflecting on our experiences.

In particular there were two themes that I identified with - dealing with social isolation, and finding the right education setting.

Dealing with Social Isolation

Joe's mum, Alison, observes Joe playing alone during break-time whilst all the other children play together. Concerned about his lack of interaction with anyone, Alison decides to pull him from school and home-school him. This leads to several challenges for the family who struggle to find a way to engage with Joe, and the family members each start to isolate themselves as they try to deal with their feelings and uncertainty of what to do.

We recently learnt that our Son's social interactions at school had become so challenging at school that he no longer went to assembly, lunch or play-time with the other children and in his classroom his desk was in a corner at one end of the classroom so that his interaction with the other children was minimised. 

At first our reaction was to ask the school to encourage positive social interaction through structured activities with a small group of peers, however we had to come to terms with two things: 
  1. He doesn't have the social skills necessary to do this, and would need to learn social skills before he could start to apply them in group situations
  2. He seems quite content to play with the Teaching Assistants and often prefers to play away from the other children which can be quite overwhelming for him 
So we held off on trying to make sure that he interacted with other children, and started to focus on his needs which meant giving him time to develop the social skills that he needed via the Social Thinking sessions he was receiving before trying to take it to the next level and encourage him to interact with his peers.


For us the greatest challenge with social isolation has been our own.
We don't go out as much as we use to as social situations can be challenging, and we try to avoid these situations as the energy required to support our Son when he is anxious or over-excited is exhausting.  Most days we are so tired from the daily challenges that we just want to stay at home and get some rest. As a result, our world has narrowed over the past year. Luckily we also have friends and family who don't let us escape into our own world too much, and remind us that we need to take time for ourselves to ensure that we don't become too isolated.

With Joe's family, I hope that they will find a way to be honest with each other about what they are feeling and start to work together to reach agreement on what to do next. Dealing with the challenges of autism can be exhausting, and there is nothing like the support of family to help you through the challenging times and remind you that you are not in this alone.

Finding the right education setting

The question of the right education setting for Joe played out throughout the entire episode, with his Mum deciding to home-school, his Dad visiting a Special school, and Joe walking back to his mainstream school as it was "school time".

Finding an education setting for your child can be one of the most important, and most complex, decisions that parents can be faced with when you find your child struggling in their current setting. There is no easy answer, as each child's situation is different which means that the right education setting is hugely dependent on their individual needs and no one can give you the answer.

Our quest to find the right setting in the past year has seen us applying for an EHCP for increased support, moving to a specialist autism unit attached to a mainstream setting, and we are now in the process of moving to a special school which has required us to face our concerns about moving out of mainstream school and what this will mean for our Son's future.

Like Joe's family we worry about doing what is right for our Son, and hope that the decions that we make along with the way will work out for him and that he will be able to flourish with the support that he needs.

Autism Awareness week - Building a community

During Autism Awareness week, I have been struck by how much the A Word is doing to build a community for those who have personal experiences of autism - from the reactions on twitter as the episode aired, to articles in the press, and the many blog posts like mine by parents who have been reflecting on their own experiences in reaction to watching the programme. 

The drama seems to be doing more than just raising awareness of autism - it is creating connections and helping parents to find the support that they need at a time when it is easy to feel like you are in this on your own.

Useful Links I have found