Last week I asked the question, ‘How has having a child with autism changed you as a person?’ The response I got was excellent, and I have summarised some of those replies in the post ‘Changes’. But they were too good to summarise, so I decided to share them all over the course of the next week. I will shortly transfer them all to the blog page also called ‘Changes’. Thanks again to everyone who sent their intelligent, moving and inspirational comments. I particularly liked this response from Beth. I wish there were more people like her out there. More comments tomorrow.
I am the aunty of a very amazing little boy with autism. I sometimes feel like an imposter in these situations as I am only the aunty. I do not suffer the sleep deprivation and nitty-gritty everyday struggle that you guys do…. but I am very close to my sister and could not love her children more if they were my own. I make sure I see them at least twice a week and I am as involved as I can be in their lives – I do all I can to support my sister and soak up as much information as I can to be as much help as I can. Therefore, whilst I am not a parent of an autistic child – I am immersed in this life and have been hugely changed by the goods and the not so goods of autism.
I started following your blog some months ago and suggested my sister and her friends (also Mums of fab little chaps with autism) also follow you. They all do and have been encouraged and calmed by your posts. They have all been pondering your question last week in how this has changed them as people and as I have listened to them journey back to a life before autism I have found myself wondering the same thing.
I think that the most overwhelming change came with my realisation that I was so ignorant of anything outside the NT perspective before we sought diagnosis. I thought I was open-minded – boy was I wrong!
Our little man is 3 and a half – my sister has her own Montessori nursery which has a wonderful local reputation – especially with children who have additional needs – she knew the signs and sought diagnosis before he was 2. I fought hard – everything she was worried about was an inherited trait to me – I saw so much of our Dad in him – I just thought he was like his Poppa. A year and a half on in our journey and I have come to realise that he is just like his Poppa – what I now understand is that his Poppa was very likely to have been a step or two up on the spectrum himself (mind you… I now believe we are all on that spectrum somewhere but that’s another rant) I was so resistent at first – I am ashamed to admit that I was that person who thought autism meant Rainman. But I quickly came to see it wasn’t about me and what I thought – it was about him and it was about my sister – what did they need?
They needed me to understand – to learn as much as I could – to support to the best of my ability – so that is my goal. I have joined many support groups and forums and have been amazed by the open kindness I have found. I learn so much everyday that what has changed about me becomes more and more changed each day.
I think because our diagnosis came a little while before London hosted the Paralympics this also provided a catalyst to my shift. All at once I was being exposed to the amazing talents of people in the face of what I considered a disability. I do not see from this angle anymore. I am differently abled to my nephew – and we are both differently abled to the athletes we watched this summer – but we are all equally important to society as a whole. I do not feel pity anymore when I see someone differently abled to me because I now understand that I have no idea what they ARE capable of. Before I saw what people couldn’t do – now I only see the potential of what they could do – of course some may need more support than others to reach their full potential.
I no longer judge people by the behaviour of their children or judge adults by what I may have considered odd behaviour in the past. I visualise the spectrum as a rainbow – and when I meet people now I enjoy learning what part of that rainbow they are walking on. And that is an amazing way to meet people.
I believe that education will have to change to meet this myriad of needs – I believe education will need to split into channeled schooling. No longer NT schools or unit placements but NT schools, ASD schools, schools for children with physical disabilities but no mental issues… you get the picture (idealistic maybe… but it will have to be this way in the future) ASD should not be treated as a disability – who are we NTs to judge – I am so open to the fact that my nephew is going to be capable of so much more than me – our job is to give him every chance to get there. It has made me see society as a much more varied multi layered enigma and we will have to educate appropriately in order for us to reach our potential as the differently abled mass that we are.
So…. autism has definitely changed me and changed the way I look at life and the people I meet. I am much more open and less judgemental and the world seems a lot bigger and far more interesting – and of course the greatest gift of all that autism has brought to me in the supremely amazing little creature that is my nephew – the entire person that he is has taught me that I can love someone this much.
I once again humbly acknowledge that I do not live the bad days that parents do – I do not have to make the tough decisions about school, I do not deal with the 3000th bottle of shower gel being poured all over the floor for the 10th time that week, I am not sleep deprived and I am not kept awake at night sick with fear for my child’s future. Of course, I wish that this beautiful boy didn’t have to face more difficulties than most children – I hate that my sister lives with the worry and exhaustion that I cannot take away from her and I wish I could make things easier for them. I wish the world was a kinder place to differences…. all I can pledge is that I will continue to embrace the open-mindedness I have found in myself – I will give support to this community and help to raise awareness – I will do all that I can to make the world kinder – person by person. And I look forward to spending the rest of my life learning how to understand the heavenly intricacies of his beautiful mind and soul.
I have rambled I know – I apologise… I do know my place in all this – I hope that perhaps my feelings might serve to show that family members can embrace this with all their hearts. We want to help and I hope parents might be comforted to know there are those of us who love your children deeply and who will be prepared to help make the world more aware. I might not be there to administer the melatonin but I will talk to everyone about it so people understand why you may choose to use it. I will talk openly about meltdowns so that my friends and colleagues may choose to see a distressed child in a different light next time they are stepping over a screaming 3 yr old in aisle 19 at Tesco – and if those people all tell their friends and if those people tell their friends……
Thank you for your ear.
All the very best.