Anna Kennedy Online – Autism Awareness Charity

I hope with this article to be able to create a positive view on disability and challenge and highlight some of the disability constructs that continue to create barriers for children of today as they have previously done for children and adults historically. I hope it will encourage parents, professionals and others to ask the children themselves and not only hear but listen to what they have to say.

They are so often a forgotten group who are not heard simply because of the label child, their perceived functionality or other labels such as Autism, PDA, ADHD etc.

Today I would like to celebrate my son who has taught me so much, especially over the last fifteen months. He has shown me that I as a parent, need to continually be introspective as I continue to navigate the highs and lows of parenting without the aid of a manual!

I am fortunate, he is able to articulate in his own way his views around his invisible disabilities, the prejudice he himself has experienced historically and currently; the isolation within his own community, within the activities he enjoys and the effects of these on him, but also his own solutions to enable himself to overcome these.

I am often criticised by professionals for discussing with my son his disabilities my disabilities and those of others but listening to my son’s views, his ideas and his solutions, enables me to help him.  He is my best guide to inform me of what he needs.

He is his own best ambassador. It has also helped him view others through a lens of understanding with more maturity than would be expected for a child of his age.

An example of this being when we recently attended his dance studio where he was doing his usual favourite sensory seeking behaviour which helps him to self-regulate; a headstand on the seat which he tells me “gives him comfort and helps with stress because it feels like he is being cuddled.”

I was sitting next to him reading a book on Disability studies by Dan Goodeley for my PgCert in Autism and Asperger’s when he asked me what I was reading. It was a section on the Foucauldian Principles of Biopower and Impairment; this sparked his interest so I read the following to him thinking oh he will not understand it or be interested. HOW WRONG I WAS!

Impairment is an element of diabolism because impairment is discursively constructed in ways that deny access to the normal life of the community” 

Disability is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers”

Foucauldian Concept of BioPower techniques discourses of the self that people have come to know and constrain themselves by.”

“We come to know others and ourselves through the discourses of biopolitics”

He asked me to explain so I simplified it and a discussion took place around how others may limit us by their views on what they think we can or cannot achieve and how we can limit ourselves; we also discussed how others may try to mold us so that we do what others view as acceptable, why that may happen and what that feels like.

My son gave some interesting personal views that I would like to share before going on to celebrate how he himself challenges the constructs, limitations, isolation others place upon him within his own community and how he is becoming his own personal ambassador also how he himself wants to create a Vlog so that other children can perhaps identify these within their own lives and hopefully realise that they too can achieve their dreams.

In relation to being molded he explained that “some are like soft playdoh that can be molded but he was like dry playdoh and the more you try to make it a different shape the more it will break and crumble. He was like a stone that would break because it was being hit by a hammer to make a different shape”

This comment triggered feelings of sadness because I remember how when he attended a Specialist provision that’s exactly what it was like, watching him crumble as they tried to make his behaviour socially acceptable to his local community, the same local community that continues to isolate him.

This resulted in school refusal and from that point things began to change and I often see and hear from other parents a very similar story. Over the last 15 months my son has accomplished so much. At first he attended climbing sessions and gymnastics only but over time you could see the difference, through picking and choosing his ow

n personal challenges, his confidence grew as he overcame each one. It didn’t stop others being unkind to him but he kept trying. He gave up when one trainer rigid in his approach which triggered strong anxiety.

Possibly the old adage of I have worked with children with disabilities for years so therefore ….. He didn’t listen to my son and what he needed nor what would help him.

I see this often where professionals who are used to working a certain way find a child challenging, a child who challenges their methodology, to be socially acceptable and if not punished and corrected.

The view often held seems to be that they require too much time, effort, patience and resources but the one size fits all methodology doesn’t work.  Children are their own best ambassadors if we just take the time to listen to them. 

However, some young lady coaches in his gymnastics club he attends have done the opposite. Lucy teaches him in a Home Education group and he thrives, she listens, recognises his struggles, encourages him, she is flexible and gentle but firm when needed. She has shown him she believes in him too.

Lucy recognises and acknowledges his passion and has taken the time to get to know him, something some coaches do not always get an opportunity to do or were unwilling to do. He has gone from proficiency badge 8 to one and recently achieved his Bronze and Silver in both Floor and Rebound and Silver in Apparatus all in just over a year.

.Recently he again showed his own insight into his own difficulties but also then problem solving not only for himself but others. He suggested to his coach that children may struggle with doing gymnastic badges so he suggested to his coach that maybe if the skills were done in class and marked off so the children didn’t know they were doing the badges that would be better. He also suggested maybe mixing the skill levels would also help to prevent boredom.

Purely validating those thoughts, views and ideas alone even if it is something that cannot be accommodated gives a child a voice, allows them to build confidence in expressing themselves and enables children to become their own ambassador. What I have also seen is that it gives children an opportunity to support each other through their own experiences.

Over the last few months my son has expressed a desire to compete in men’s artistic gymnastics but he struggled to voice this to others. Others view, though I may be wrong, was that they did not hear his voice because their view was it was mine, not his. I kept encouraging him and explaining to him the importance of expressing his hopes, dreams and aspirations as well as what is worrying him himself.

The system during various processes often states they want to hear the children’s views but when it doesn’t match their own perception or views they choose to then state that they had not sought them because of their chronological age or other factors.

I asked him to explain to me why he wanted to do gymnastics and what he loved about it and I was told the reason he wanted to compete was “he wanted others to know he had a place in gymnastics too” the reason he loved gymnastics was “feeling of flying, with feet off the ground “eventually though he was heard and a young coach named Emy has offered to support him on the pathway to competition.

So we have started this journey with a combination of one to one training, recreational gymnastics, tumbling; acrobatics and a personal progression pathway for him to help him achieve his goal of competing.  She has shown him she believes in him too and that she will support him to get there. Coaches like this need recognition and validation because they themselves are stepping outside disability constructs, they are seeing the child, their passion and their hopes and dreams.

Also noticed by myself and others is he naturally starts wanting to share with others the skills he has learnt to help them achieve the skill. When he struggles because of the perceived demands one way that’s been helpful to overcome this is to enable him to help others learn a skill. Which may be why he has told me and others he wants to be a gymnastics coach. Gymnastics has offered him so many opportunities to develop interpersonal skills, to be part of a community that shares his passion, to socialise and work through issues that may come up in the safety of a supportive environment. 

When he was younger my son tried dance lessons but unfortunately a lack of understanding, gossip and preconceived ideas of what Autism looks like meant that he was asked to leave the dance studios which really knocked his confidence and upset very much; this resulting in a refusal to do what he enjoyed most, dancing. However, we as a family have recently found a dance studio where he has again begun dancing, enjoying musical theatre and also cheer-leading.

I marveled at how far he has come over the last year when he recently expressed his eagerness to take part in a show, which he continues to prepare for on the 29th of March. Another opportunity to have fun, to personally challenge himself, to increase self-esteem and challenge the views others hold about his dis…abilities. A perfect learning opportunity for everyone.

What is sad is on this journey with him is that I have come across and continue to come across the difficulties well documented in disability studies. Of the destructive, negative constructs that dis-empower not only children but also adults with disabilities. The lack of opportunities, lack of facilities, training, funding, support networks. How perceptions of disability impact upon not only children with disabilities but their parents.

For Instance, recently the views, opinions, assumptions of professionals within the local authority expressed to myself and others that a child attending activities that are not for disabilities only equates to the documented needs are embellished/exaggerated in some way and do not require support.

That only education and socialisation in a formal school setting is the only acceptable option for children like my son, that attending groups of the child’s own choosing is forced Isolation. The rigidity of services in regards to what constitutes an appropriate, efficient and suitable education, socialisation and appropriate peers yet they place no value on the views of the child and when in receipt of them they are not shared or it could be viewed as withheld. 

On one occasion when I showed a professional my sons certificates of achievements over the last 15 months the response was “anyone can print certificates off the internet” thereby deliberately dismissing and minimising my child’s accomplishments. In reality, children’s development is not static but fluid, can take place in a variety of settings and many factors can and do contribute to that.

There is immense scope and fluidity in children’s personal growth and development which is specific to that child because every child is different, no two children are the same.

More than once I have seen others lack the confidence in him and struggled to believe in him because of their perceptions of myself the parent, the perceived behaviours of my family, our disabilities and possibly the energy, time and effort required to work with a child who hides his personal difficulties through masking; who does not fit into the stereotypical model of disability created by society; a child who challenges their constructs around that young person.

My son is his own best ambassador, he enables me to help him by being able to express himself, through various mediums, over the last 15 months he has begun to read, obtained certificates in RHS Gardening, Crest Awards, Gymnastics, and is now getting ready to participate in a show with his peers from his dance studios.

He hopes to compete in disability men’s artistic gymnastics within 6 months. Wants to create his own Vlog to help others to know they can achieve their dreams. This is a young boy who 15 months ago was too scared to attend school, was expressing his anxiety and demand avoidance in lots of ways that were not helpful to himself or others. He has set his own challenges and succeeded; it’s been a roller coaster but a journey that is not easily forgettable.

He has taught me more than any text book, or professional I have ever known. He has shown me how a child can flourish when others take the time to listen and actually hear in order to support. He has shown me his own personal insight and understanding into his own struggles and how he then uses this to help others. 

Yes, he has his challenges, yes he struggles but his own understanding of his own disabilities has given him the knowledge and understanding to be his own ambassador, to say what does and does not work for him. I am so proud of him.

Disability constructs are destructive, every child is unique, every child has potential, every child deserves an opportunity to achieve their dreams and aspirations. It is morally wrong for others in positions of authority to determine who they view as worthy of support, who will give back in the future, who deserves support via their depleted budgets, because in the right environment with the right support, patience, time and effort children can and do flourish. EVERY CHILD MATTERS.

News I Am My Own Ambassador – written by Georgina Robertson