Autism parenting: highs & lows

Autism parenting: highs & lows

The highs: imagine Jess Glynn ‘You’ll never be alone, I’ll be there for you...’ soundtrack...

Honestly, this little boy has changed all of our lives for the better in so many ways.

 

It’s extremely difficult to explain it or even imagine it unless you live it and sometimes I feel like I’m having/living an out-of-body experience. I know how I felt about two Mums with autistic children (I had no idea it was autism or what autism was back then) before I had Henry and thinking how hard and difficult it must be for them and wondering how on earth they did it and here I am now, mum to autistic Henry and I don’t recognise it in myself or that that’s how people might feel about me/us because Henry is so much more than just autistic.

People comment on how much patience I have and how good I am with Henry etc. The truth is I have had to learn the patience, I am good with him because I HAVE to be, he doesn’t talk so I had to really figure him out and well, my husband and I ‘do it’ because we love him, he is our son, our own flesh and blood and we have no choice, of course we’re gonna ‘do it’ just like all parents everywhere.



I’m not gonna lie though, it is really tough but, parenting is tough, full stop. If you don’t believe me just wait for the teens, haha!

I’ve said it before that Henry, and all autistic children I believe, have an ethereal quality to their looks partly because they are so pure. If Henry looks into my eyes it’s as though he is communicating a thousand unspoken words and seeing right into my soul, it’s deeply moving and I feel privileged to experience it.

He is utterly fascinating to watch and so intensely in tune, with me in particular. Oh my, the level of detail this boy sees not only in my face, eyes and body language but in every single thing he looks at, it’s all detail and I wish, wish, wish I could see it too and share it.



The flashes of brilliance we see are nothing you could ever tick off on a school report and we must have said it over a hundred times that he operates on a much higher plane than us mere neuro-typicals.

In his own way, he absolutely does grow and make progress all the time and each time it feels like such an achievement and we all share so much joy in it, every new word, tune, drawing, expression, a moment of brief social interaction.

The literal way in which Henry sees the world has us in stitches so often and has us realising that he is almost never incorrect in how he sees it.



At home when I get to just be with Henry and to mimic and allow him to enjoy his comfort zone, it’s all so easy. He is so incredible at self-initiated play and provided there is a constant stream of snacks to graze on he is one happy, happy boy, it’s such a pleasure to be in his company and not engaging him. It’s really peaceful actually.

 

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The lows: imagine part Yentil tear-jerker part shouty angry Black Sabbath soundtracks...

In the very early days, the thing I cried over and felt most depressed about was that Henry was not going to have any friends, I just couldn’t imagine a life for him without them. Maybe this heart of mine has hardened a bit too much but, now that Henry is almost 8 it doesn’t bother me at all that he has no friends. He is not capable of socially interacting and engaging yet and he genuinely is so happy and so very lucky to have siblings also.

I can get very quickly depressed and deeply sad when we are with regular children the same age or younger than Henry, the difference between him and them is stark and I have to force myself to not think about it.

Speaking of hardened hearts, the next item on the high ranking autism parenting lows are the judgemental/dirty/pitying looks, stares and comments both he and I receive whilst out and about in public. With each one, my heart has not bruised and healed but cracked, and those cracks will never repair.



Our friends and family find it hard to imagine anyone would ever even contemplate judging us or commenting but trust me, they do. Autism is not visually recognisable and there are some pretty rotten perceptions of it out there so it happens every single time we step outside our front door.

My older teens are starting to notice it more now too and it makes me SO sad to watch them realise that other people think their brother is weird or rude. Another thing they are noticing is just how heightened mummy’s anxiety, stress and protection/curation of Henry gets when we set out for a day trip somewhere. Errr, I tend to relax a bit when we’re on the way home.



With non-verbal autism, there is that desperate helplessness when you cannot figure out how to help your own child when they are upset and unable to communicate it to you in words.

I mention to people that Henry is non-verbal and they will so often say (trying to be nice and stay positive) “...oh, but he likes his school?” And then I have to say “...I don’t know if he likes school, he can’t tell me”. And then the penny drops and the conversation goes quiet.



I will always struggle with:

1. Not being able to be spontaneous in our family lives on weekends etc. And if we are, to accept the impact this has on Henry (um, not good).

2. Henry not wanting proper cuddles and emotional support in the usual neuro-typical way.

3. The very frustrating thing that is ‘no’ means ‘no’! If Henry decides he is not going to do something/go somewhere/eat/dress/shoes or coat on etc. he is absolutely not going to do it. It’s so hard to explain and is often where I think people feel discipline should come in but, trust me, it does not work.

There is no explaining or reasoning or bribing or distracting or even at age 7 physically forcing autistic children, no just means flat no and their own view is the only one they can have.

They are strong, wily and you will never pin them down, it’s like a kind of look/physical state and you somehow just know not to go there and not to force the issue.

And finally there are the negative behaviours that require a whole other blog and to be honest, I’m not ready to write about them yet.

To love someone so much and to know they love you in their own way too but they need to physically hurt you and themselves...It’s a tough one this, and my journey with it has only just begun.



Now, how not to end on a depressing note...? Perhaps with a lovely quote, from Instagram that goes like this...repost from@findingcoopersvoice.

"I don't talk about my son's autism to complain. or for sympathy. simply put...it is my life. my exhausting, bizarre, joyful, push to the brink daily, fight for what's right, never give up hope, learn what really matters, almost, unreal life."

 


1 comment

  • Beth Taylor

    Dearest Trish, Paul, Ben, Abi and Henry. Thank you for the wonderful way in which you share your journey with us….as your family so far away and unable to get physically involved, it is a real treat to be able to at least connect through your amazing, honest, heart-wrenching stories. Thank you for taking the time, for being fearless and brave…..and so strong! We love and admire you so much. Love, The Crazy Taylor Gang.

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