Promoting Autonomy for my special needs child .
Making a choice is something most of us take for granted , being able to decide , being able to say no ,it’s something that the average person owns that is Autonomy ,it largely makes up who we are as people and it’s understood as a human right ,it’s exercised as a human right , but what about those without voices ?
What can we do as parents carers and advocates to change this ?
How can we work with professionals ?, how can we raise understanding ?and how can we promote it at home ?
The truth is we can easily in so many ways .
There are a few ways I tackle this issue the first one is no apology’s , I have no issue about someone not liking me ,or deeming me difficult ,if I am promoting my child’s voice and and encouraging them to make choices and respecting them .
What this brings is a confidence , inclusion isn’t a favour and neither is promoting active voices for those less able to be vocal .
When we meet with professionals I always lead I ensure Oscar is acknowledged first ,how he feels is paramount the meeting is about him and he will be put first , it is not a case of we enter the room and I’m spoken at ,while Oscar blends into the background , I simply don’t comprise this at all ,we enter and Oscar is Center I introduce him and he is made comfortable spoken to ,not at and not ignored .
I also refuse for my son to be discussed by multiple professionals like he isn’t in the room and conversations to take place around him ,where he isn’t included I involve him and I make it clear I expect that or we are leaving , I’m not rude but I am clear .
If I feel there are ableist comments made by professionals ,which has happened in the past , I will immediately say , stop that isn’t appropriate and I demand an apology for my son to my son and myself , and I explain what’s been said and why that’s offensive .
This is the nonnegotiable way we choose to engage with services .
To promote Oscar making choices as a severely autistic child with significant speech delay ,we use a lot of gesture , animated language and visual clues ,having ODD as well makes things very interesting and mostly we look like a couple of overindulged child TV presenters but his communication is growing because he has confidence to express himself .
This works for us and we own it ,communicating with Oscar isn’t always easy and at almost ten years old , we have got to a place where we want him to know his voice means something ,and he can make choices about his preferences and take part in big and small decisions, Oscar is one of three children and doesn’t rule the roost by any means ,but I do not want him to just be passive and accepting of anything , it’s important to be able to express himself and say no to protect himself , and also seek enjoyment and help him feel in control .
I have started asking Oscar when he wants to take a bath or shower ?he sometimes chooses one or the other equally ,before now I always opted bath , we started seeing some big behaviours in the bathroom and as we unpicked it , it turned out he wanted to take a shower , little things like this can really bring a lot of pride and minimise behaviour too , I feel really bad I had over looked that , I’ve also asked Oscar to start choosing his clothes and which shoes he would like to wear as he has preferences and getting dressed was causing an issue , I’m also encouraging dressing .
All ways of promoting Autonomy and raising confidence for him , making choices and being heard .
The same for activities I give a choice of two ,he is able to then decide , limiting choices is also very good to prevent overwhelm and reinforcing this with a visual to avoid confusion .
In Oscar’s life I want him to know the options so he can make informed decisions later on ,this all begins with knowing you can make a choice from an early age .
As a family Oscar has an Equal active voice and as the youngest of the family he has four adults protecting him and helping him grow into a confident young person ,that can vocalise what he needs verbally or no verbally so he feels seen and heard .
Do not assume someone who can’t speak has nothing to say .
We will continue to advocate with our designs which are a great way of sharing a message and continue advocating for those without voices , building a community with others and connecting to promote inclusion and we will be encouraging Oscar to have a voice in that for himself .
The harsh reality is even though I wish I would be , there will be a time in Oscar’s life where I won’t be here and I need him as ready as he can be to continue thriving in this world and celebrate living his best life and knowing that he has a voice and it has value .
