Last Minute Changes

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.

Alan:

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,

Alan.

stefzad:

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.

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5 Responses to Last Minute Changes

  1. Rich B says:

    Thank you for all the comments that have been put on this thread by parents. Can I say to Alan please hang on in there, our son is 4 and was diagnosed last summer with Autism after a year of the multi disciplinary team assessing him. We knew there was something different when he was 2. My fantastic wife just kept asking questions and she is still pushing the various OT’s, SENCO’s, and all the others for input and support for his various needs helping him at nursery and preparing him for school.. If it wasn’t for her I would probably be in a similar position to Alan. Alan, I know life can be hard and I am sorry it is most often suffering for you. I really hope things turn around. I couldn’t envisage the future for my boy at one point but over time we have learnt to cope/adapt and he has gradually started to speak again and his play with his elder brother is wonderful to see. Take care of yourself.

  2. Laura says:

    These are great stories you’ve posted. Showing both sides, the good and the bad is so important. From low functioning to Aspergers, the road to parenting a Spectrum child is not an easy one. Everyone has potholes in their road. The sooner outside help can come into the families lives the better. After 7 yrs of parenting an Asperger child, I’ve learned support groups are a life saver. Family fun nights at our local Autism Ontario Chapter are our only fun nights we ever get. Never comparing my child to another child helps my self esteem and my child’s. Reminding myself my child can learn and change, just more slowly than others. And most importantly, just because my child can say that he wants to kill me doesn’t mean that he wants to kill me. Just another pothole in the road.

  3. Alan says:

    I am so glad I chanced upon this blog. I have been feeling so isolated even from others I know with ASD children who seem to cope or feel the need to show they are for their own reasons. I will of course hang in there, thanks Rich B, my wife and I are trying so hard to do so but people and life kicking us when we are down.

  4. Al says:

    This message is for Alan (sorry b’s dad 🙂 ). This blog is fab, I think it was reading one of the posts that gave me the push to get my son diagnosed. Chatting to mums on some of the special needs forums like mumsnet and netmums has been fab too. As much as you can, you have to forget about the outside and focus on yourselves. I had a rare day with just my older NT son today and it was so strange without the distracting, noisy malarkey my other little fella dishes out to us. I realised that I missed him, we both did. I’ve just adjusted I think and I look at the other little kids his age, with their good manners and advanced conversational skills and think, how dull! I really hope things look up for you and your wife. I always sound flippant but this has been tough times for us too, but we adore our little boy with all his quirks and faults.

  5. M says:

    These blog posts have really lifted me on tough days, they are almost like therapy. It’s comforting in a strange way to know that we are not the only family suffering dark days. We keep pushing every day. The area we live in within the uk isn’t great at having asd support groups for parents but I sometimes wonder how nice it would be to go out as a family with other families going through the same thing. It’s made me realise we need a support framework in place too. So many friends fall by the wayside during this journey- no ones to blame, it’s mostly us that just finds it painful to be around nt children. This blog has been great at supporting us so thank you.

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