How Has Autism Parenting Changed You (Part Six)?

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’. Over to Jessie, miriamgwynne, lookingforbluesky, Al and ASD Dad. Please join me tomorrow for the final selection of comments.

Jessie:

It has completely changed how I feel about work – my drive has vanished. Or is it that I just can’t concentrate on work any longer? i don’t know. I sometimes feel that the last time I did a proper day’s work was the day before I first hear the word linked to my son two and a bit years ago. (Does this change?)

I also think it’s created a small distance between me and some friends who just don’t understand what I’m talking about. (some don’t seem to believe he has autism – that he’s being “labelled” negatively. hmmm). Unless you’ve been through it, I’m not sure people really understand what it’s like to have a child with communication delay, with whom you can’t fully engage. How limiting reduced eye contact is in a relationship.

It’s also made me a bit angrier – particularly when I think how children are being failed – and more thankful for small victories. I think it’s incredibly hard to explain what it’s like to be an autism parent, something you do so well B’s Dad.

On the upside, I think also it’s forced me to change my parenting – for the better really. You can’t be complacent with an ASD child can you? I’ve had to invest more time, energy and a lot more money. And I’ve met some unbelievably wonderful people – fellow parents who I feel an instant closeness with.

It has strengthened my faith but also tested it to the limit. It has changed the very way I live my life. It has brought my husband and myself closer but also rocked our marriage at the same time. Although we had years to build up to the diagnosis the day itself still hit me like a brick. So here’e some of the ways I have changed since becoming a parent of an autistic child (in my case autistic twins at both ends of the spectrum):

– a deeper love for those in society who just don’t ‘fit’
– much more determination to fight for what is right and defend a child who can not defend himself
– I have become a reader and researcher of a subject I once knew little about
– I have come to live off less sleep than I ever thought possible
– I have learnt the true meaning of friendship. Some friends can understand you without ever meeting you in person
– I have learnt to gain joy from the simplest of things
– I have grown back bone where I had little before
– I have changed from a person who never cried in public to someone who can shed tears in front of anyone at any time.
– I now truly believe in miracles because I have come to depend on them.

I also blog about my children at http://www.faithmummy.wordpress.com

I guess it depends if you want the inspirational stuff or the ugly truth, the stuff I think and don’t share so much. Friends say I am exactly the same, even though I spend my time caring for my children now, instead of partying. I don’t know if that is a good or a bad thing. The only thing I think that has really changed is that I try to live in the present and enjoy each day as much as I can.

http://www.lookingforbluesky.com/

Al:

Having a son with ASD has challenged my view of the education system and what inclusion means to me. I struggle with how things are and how I think things should be, and my role in this. How much do I accept and how much do I challenge?

ASD Dad:

Having a son with autism has changed me in many ways, but one fundamental shift is in the way I prioritize my life. Whereas in the past it was easy for me to get sucked into obligations minor and major, often at the expense of myself or my family, now the path is much clearer: my son comes first. In a way, it’s made life easier since life decisions are more clearcut: will this help or hurt my son?If the former, then we do it; if the latter, we don’t.

Accompanying this re-prioritization is a general realignment of expectations. I had visions of family vacations, dinners out, movies with my boys. I still expect and hope for those things, but I know they are going to be much different than what I’d imagined prior to getting an autism diagnosis. And, for the most part, I’m okay with that. Except for when I’m not!

http://www.asddad.com

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3 Responses to How Has Autism Parenting Changed You (Part Six)?

  1. Thanks for a really interesting series of posts, and for including my little comment too!

  2. stefzad says:

    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.

  3. Beth says:

    Hi – just felt compelled to respond to Jessie – I fought so hard against my nephew’s diagnosis – I thought the world was going label mad! But this was because I didn’t understand what autism was… hopefully those close to you will come to understand with time… maybe suggest they research and learn – my decision to do this came after a pretty blunt conversation with a friend whose son is also autistic – I am so grateful to her for snapping me out of my ignorance bubble. I believe many friends will be grateful for the prompt to go and find out what autism is – once I grasped the monumental scope of the spectrum my understanding and acceptance changed everything….. and to ASD Dad… our local cinema has special viewings for children who don’t cope as well as others might… they leave the lights on low and the sound is quieter and of course you are never going to get a disapproving look or negative comment… and to B’s Dad – what a wonderful week this has been – what an amazing project x

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