Advertising and marketing media is filled with slogans such as, ‘Because you’re worth it!’, ‘It’s all about you!’, and, recently, that dreadful advert from TUI (formerly Thomson Holidays), where an entourage of lackeys serve the every whim of the main character, ‘Putting you at the centre!’
So, what does any of this have to do with a blog post about children with additional needs on Autistic Pride Day?
Well, parenting is life changing, it alters everything; the focus of our lives becomes less about ourselves and more about the child we’ve brought into the world.
This is generally (although, sadly, not always) true for all children, but it increases even more for a child with additional needs or disabilities.
The level of care required, the sacrifices that need to be made, the time that needs to be invested, and so much more all increase exponentially.
James is 16, however his additional needs require a level of care that would be typical for a three-year-old.
He cannot be left unsupervised, has no real sense of danger, has a high level of personal care requirements, and there is a great deal of juggling that needs to happen just to get through each day.
In this world, the self-centred self-obsessed advertising and marketing slogans are just irritating white noise; an irrelevance in a situation where they cannot have any place in our lives.
Our focus simply cannot be on ourselves, it is impossible.
It has to be on both of our children, but particularly James as his needs are so much greater, however we wouldn’t have it any other way.
There are many challenges that we have faced in recent times with James.
Him not being willing to leave the house, especially in the day and particularly not to school.
His recent diagnosis of epilepsy to add to autism and learning disability.
Things are hard and yet through it all, through all the difficulties and the self-sacrifice, there is the overwhelming natural desire to meet James’ needs, to give him unconditional love, to be there for him, with him, through it all, and to take pride in each and every achievement he makes.
And every now and then, we get a wonderful treat!
A few evenings ago, James was sat with us when he was suddenly filled with joy, a huge smile spread across his face, and he excitedly said “Appy!! Appy!!”.
For this almost non-verbal boy this was a wonderful expression of how he was feeling in that moment, and it had us in bits for the rest of the evening!!
We were, and are, incredibly proud of him.
Proud that he is able to cope with it all, to face much bigger challenges than we will ever face, and to still be able to experience overwhelming joy in the midst of it all!
All of the sleepless worry-filled nights, all of the challenges and difficulties we face together, all of the hospital appointments, all of the sacrifices that need to be made, all of the times when we can’t do something or go somewhere, even all of the times when we are cleaning up things that we would rather not, all of it melts away when times like this come.
We change the marketing slogan to meet our context, “Because it’s all worth it!”, “Because he’s worth it!”
Worth it because we love him, worth it because he tries so hard and we are so totally and overwhelmingly proud of him for each tiny little step he takes, every little sign of progress, each word he is somehow able to convince his voice to say.
What about you?
Where do you see yourself in this?
Maybe you are a parent or carer of a child with additional needs and ‘get it’ as you are on the same journey?
Or maybe you are a children’s or youth worker, or in education, and get to support a child or young person with additional needs when they are in your session or class?
Whatever your context, the counter-cultural message shines through… put others before yourself, love others, be self-sacrificing, serve others, especially these amazing kids that we have the privilege of journeying with, that give us so much to be so very proud of.
So, let’s continue to be counter-cultural, revolutionary, rejecting the narcissistic, selfish, self-obsessed, self-serving culture that society would have us embrace.
By putting our kids first, being proud of all the little things they do, we can be better people, be the people we should be, to love and serve the children we care for, whether they are our own or not.