I simply don’t know what the future holds for James. Academically, he’s going OK but emotionally, we’ve got a long way to go. Will he be able to cope with traditional high school? If not, the alternative is home schooling. How would we manage that? Could I work? Beyond school, will he be able to live independently? And what will happen when Chris and I are old or if we pass away? So many of the parents I associate with have this constant worry in the back of their minds. Many of them have drawn upon their superannuation already in order to finance therapy programs and make modifications to their homes to accommodate their children. How will they manage further down the track? You can appreciate why so many families with ASD kids break down.
As most of you know, I have a love of music. I’ve been a singer and a pianist my whole life and it’s just a part of who I am. When I was pregnant, I sang and played every day, and when James was born he just hated it – especially my singing!!! Sometimes he will tolerate the sound of the piano, sometimes it sends him into meltdown. He has never liked my singing. He blocks his ears and cries, and asks me to stop. These days, he’s developing a tolerance for music but interestingly, prefers to listen to male singers and acoustic guitar. He likes Pete Murray and his latest favourite song is “Hey there Delilah” by the Plain White T’s – it’s just male voice and guitar with a few gentle strings. Sometimes I really miss my music and simply having the freedom to sit at the piano and play and sing for hours on end like I once did.
Parenting certainly comes with restrictions on all levels however I think for most ASD families there’s more restrictions than for most – and we really are quite fortunate in this regard. I miss the freedom of doing as I please, I’m sure all mothers feel the same way. We are all just constantly questing for a little more time for ourselves! One day …. xxx