The reaction to my last post The Reality of Christmas caught me completely off guard with over a thousand views in the first twenty-four hours. Another facebook page was kind enough to share this post and my notifications were going a little crazy to say the least.
I was apprehensive when pressing the publish button on that last one, as I knew my comments could cause a little stir amongst the autism community, yet I still went ahead as I needed to get my thoughts off my chest. I was overwhelmed by the amount of people who thanked me for speaking up and saying what they had wanted to say themselves. As is always the case with anything that someone publishes, there will be people who disagree and not connect with the story. I read a few comments asking me to put myself in Joseph’s shoes and try and see things from his perspective rather than my own and as I always do, I reflected on our lives and how we manage Joseph’s autism.
It’s true that I expect Joseph to fit in with our lives, because this is the world we live in. Whilst it sounds very fanciful that we should adapt our lives around children with disabilities it’s not realistic 100% of the time. My aspiration for Joseph is that he can be an independent adult and whilst I admit that I do need to make adjustments for him at present, him achieving success will mean that he needs to gain an incredible amount of life skills and fit in with what we see as normal life.
Every day for us is about helping Joseph deal with what most people take for granted; sitting down for a meal, crossing the road and even having a simple conversation. As a parent, we teach our children life skills every single day without ever realising it but for me it’s a much more conscious effort.
Me being disappointed about his reaction to Christmas, is my desire for him to experience life as any person would without autism. What parent hasn’t longed for that moment where they experience with their child, the joys attached to Christmas? They are my needs and I continue to have those despite an acceptance of his autism diagnosis. I don’t stop wishing for him to ask me if he can have a friend around for tea, my desire for him to kick the ball in the playground with his friends hasn’t left me and I am still hopeful that he will not be dependent on me for the rest of his life.
Those are my needs as a person and as a parent. I maybe selfish or I may just be human.
Joseph’s needs are more simplistic and often conflict with mine and I attempt to find the balance between what he wants/needs and what I need. As a family, I have to balance the needs of everyone and I don’t believe that everything should revolve around Joseph because of his autism. We always take his needs into consideration but that doesn’t always mean he is placed first, as harsh as that may seem.
If our lives revolved totally around Joseph and what he wanted, it would purely consist of him over-indulging in food (& juice) and watching the iPad for all of his waking hours and how would that figure?
Back to Christmas
There are some children with autism who will be completely thrown by a change of routine, the disruption of a household and quite the opposite of a neurotypical (I bloody hate that word) child, would be distressed that there’s a pile of new toys in the house.
This is not Joseph.
He is not distressed by the turkey.
He is not distressed by Christmas crackers.
He is not distressed by extra visitors to the home.
He is simply #notbothered
I celebrate Joseph’s achievements, small or large both publicly and privately and for me, this blog is around detailing the rough and the smooth. It’s not about appeasing the followers with what I think you need to hear, it’s about telling the truth of our journey no matter how difficult that may be to read. Our journey is indeed that, our journey and that may be very different to yours.
My aspiration for Joseph may be way off track but I won’t stop believing he can do it. The approach I adopt may be very different to other people’s but whilst ever he disproves the doubters, I shall continue to push him as far as is reasonable.
The sky is indeed the limit.