Do I change my children or do I change the world?
As my daughter sat beside me in bed and read from her reading book I wanted to freeze frame the moment. This is awesome. That any child learns to decipher scribbles on a page and decode them to understand words and meanings is amazing. This is the wonder of learning to read. It made me want to cry. Partly with pride in my daughter but partly with sadness for her twin.
Will her brother ever understand sentences and grammar and spellings? Will he ever be able to speak or read a book to me? Does that really matter?
And once again I am faced with the autism dilemma that I try to bury every single day:
Do I force my children to conform to social norms and mainstream curriculum, do I carry out therapy after therapy with them, alter their diets and ‘treat’ their autism, or do I accept their differences and embrace all that they are and instead spend my time educating and encouraging society in awareness and love for all people?
In other words, do I just accept this? Do I try to change my children or try to change the world?
The longer I am in the autism community the more I am pressurised to join a different ‘camp’. People want to know if I am in the ‘acceptance’ camp, the ‘genetics’ camp, the ‘vaccine blaming’ camp, or the ‘healing camp’. And it is so complex an issue I just can’t decide.
The problem for me is I have two very different children both of whom have a diagnosis of autism spectrum disorder (or should that be condition?). One is non verbal, one very verbal. One has severe learning difficulties and global developmental delay, the other is academically able and only displays delay in gross motor skills. One attends a school for children with severe leaning needs (a special needs school), whilst his twin sister goes to the local mainstream. I have the honour and privilege (some would argue stress and difficulties) of seeing so much of the spectrum. I hear talk about which end is the most ‘difficult’ or the most ‘challenging’ and I truly can’t answer that.
On the days my son is biting me, screaming for hours in distress and I have no idea what the cause is, or I can not pull him away from the lifts in the shop in order to buy a simple item, I would agree with those who argue the more ‘severe’ end is harder. Then on the days when my daughter takes panic attacks and can barely breathe, when she talks about how sad and confused she is, when I look at her and see a child so vulnerable and socially struggling, I can identify with those who feel the more able end of the spectrum have it harder. I love that my children won’t bow to peer pressure and see the world in a very unique way. I love that something so simple as a lift door closing brings my son to the height of ecstasy. I love that my daughter can focus so intently on her obsession and memorize huge chunks of script. I can see benefits to their basic understanding of the world, how things are black and white to them and their love of order. Of course I love them for who they are, irrespective of autism. I don’t ‘hate’ any part of them even in my toughest moments.
But on the other hand I fight strongly for speech and language, and occupation therapy, and support in school. I would do anything to hear my son’s voice. I push for respite even though I love them. So I feel so torn between the different camps.
While I didn’t see much change in my children after their vaccines I know families for whom the change was both real and devastating. If I truly thought vaccines had an effect on my child would I want the world to know and prevent their child or family going through what I had to? Of course I would. So while that anti-vaccine camp may not apply to me I do understand people’s passion.
While I really want to know and understand if there is any genetic reason for my children’s autism I feel very uncomfortable with the thought that if a full genetic explanation can be found this could lead to couples choosing to not give birth to babies believed to be on the spectrum. And it does seem like every other day there is another article giving some bizarre reason why there is an increase in ASD. There is enough guilt on families already and for a huge proportion of families this can lead to parents taking antidepressants. And with massive funding in research there seems to be ever decreasing funding for support.
As a believer in God I have also been asked about my views on whether I believe God could heal my children. I firmly believe he could. Do I believe they need healed? That is another question altogether. So I pray for strength, wisdom, and knowledge to know what paths and camps to seek advice from and when. I pray for healing. I pray for their teachers and therapists and I also pray that as a society we become more tolerant and understanding.
As with everything in life there is rarely a simple answer.
Do I just accept this?
Well I clearly want the best for my children so I will continue to pursue any avenue I feel is right for them to help and support them.
Do I change my children or change the world?
Right now I think it is a bit of both. In fact I would even say my children are possible changing the world in so many wonderful ways.