To round up the series of posts on ‘How having a child with autism has changed you as a person’, here are two final entries. Both face up to some of the difficulties I touched on in my last post. Thanks again to everyone who contributed.
I have a son who has been diagnosed as on the spectrum, and most likely has Aspergers. I can relate to your article on B and your coming to terms with his ‘disability’ and the ignorance of others.
Anyway I would like to contribute to your next blog on how my ASD child has changed me. So here goes.
My name is Alan and I am 35 years old. My son (let’s call him R), is almost 5. I have a younger son of 3 and the first time I knew there was something wrong was when we thought our younger child was a super baby, advanced beyond what we had seen before. What of course was true was that R had not advanced as he should and was behind his peers. Even as a small baby he would push away from being cuddled, did not like baths etc etc and has never slept!
Over the last two years we as a family have faced such hard times through living and trying to cope with our sons disability that both my wife and I have had breakdowns, lost our jobs and almost our marriage and are now both on medication just to get by every day as well as now facing bankruptcy.
Through all this however I have gone through a journey of self discovery, an understanding of the way the world really is. I now also do not fear death and will embrace it when it finally arrives, I know now why they call it being at peace.
I was brought up to believe that you went out to work, provided for your family and tried to be the best person you could be. Having to give up work and being so sleep deprived that often I was a monster to have around made me feel I had failed as a person, partner and parent. But I now feel I have a true view of the world and not some suger coated spoon fed version. Life is hard, life is most often suffering. Those who cruise through it without hardship do not truly appreciate its beauty. I now cherish the small moments I took for granted. The hug from R that comes so rarely but means so much. The evening out with my wife that is about twice a year. Truly knowing who my real Friends (and family), are. I also now hate Christmas with its over indulgence on all things bright and exciting. For a family with an ASD child, Christmas is torturous.
So I guess you could say my ASD child, my beautiful R, has taught me more about life in 5 years than I knew in the previous 30. I also no longer view death in the same way I used to. I hope this is something you can use in your blog and I haven’t gone on too much. Please excuse any grammatical errors, I only get on average 4 hrs sleep a night.
Keep up the blogging,
I feel in many ways I’ve dropped out of life as I once knew it. It’s hard for me to have a conversation about anything without somewhere mentioning my son. I have to bring it up at work to explain why I can and can’t travel, meet deadlines, do things most people in my professions would jump at. I bring it up socially to (hopefully) ward off listening to parents prattle on about what i now see as inane worries.
On my zen days, I realize that having a son with ASD (I’m ASDMOM- married to ASDDAD) has given me the golden ticket to avoid the temptations of superficiality. I have to exercise so much patience and compassion on a daily basis (with C and myself) that I’ve been changed irrevocably.
That said, other parents can and often do fill me with rage. I would not survive this had I not found a group of other Spectrum parents with a penchant for black humor. If I didn’t laugh with them from time to time, and rage, I wouldn’t be functioning right now.