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I changed my mind

A few weeks back, Facebook showed me a ‘memory’: a desperate post from the day The Cat was diagnosed with ASD (Autism Spectrum Disorder).

I haven’t been able to write about it before now, because what I wrote in the post gave me a real shock. I said something along the lines of ‘How am I going to cope now that I know [The Cat] will be 'difficult' forever?’

I feel sick.

No wonder he was finding life hard. Because let’s get this straight: he wasn’t ‘being deliberately difficult’, and he wasn’t ‘born difficult’ or ‘a difficult person’. He was struggling. He was finding life difficult and in a constant state of fear, frustration and confusion, and his behaviour was his way of telling us that everything felt wrong and he needed our HELP. And all we saw was a child who was not responding to the discipline that worked on his brothers, or acting in ways that - in our limited experience - did not seem age-appropriate. And the Health Visitors who preached Naughty Step and Time Out made it clear that if he wasn’t responding, I was clearly not doing it properly. (Thanks, but no thanks. I wish I could tell them what they did to my confidence and self-esteem, but also wish that I could reform the whole system so that they firstly had broader training, then weren't so rushed due to funding cuts. Would that finally allow them to help rather than damage Mums like me, do you think? Because the damage was significant. Don't ever get me started on Health Visitors and Sleep Training.)

We couldn’t see or hear our little boy because we didn’t know how to watch or listen to a child like him. And I was there posting about my own desperation and fear of difference or difficulty while my child floundered. I meant it more subtly and it came from from my own feeling of hopelessness - like ‘I’m going to have to keep on fighting for this child like I already have been, and I don't think I'm strong enough to do it forever, or to cope with nothing ever being straightforward’ - but I hate the lack of awareness that allowed me to write what I wrote. I would be mortified if ever The Cat read my post.

But anyway, we were lucky; we have a charity in our area that runs courses for the parents/carers of children with Autism and ADHD, and later we had a remarkable Family Support Worker funded by our Primary School. I was able to educate myself. I learned about Sensory Processing Disorder and overwhelm and meltdowns and rage cycles and emotional intelligence and learning styles and theory of mind and face blindness and difficulties in reading social signals and body language and many, many other things that made life confusing for my son. I’m not going to go into detail on any of those areas, as that would be a book rather than a blog post, but I feel like the proverbial scales fell from my eyes. What I suddenly saw was a frightened little boy who understood very little of what went on around him, had a very limited comfort zone and had nobody to anchor or guide him, as his Mum had had no idea what he needed. Mostly his Mum got cross or cried at her own hopelessness. His Mum was actually quite depressed after years of not knowing how to make her undiagnosed SEN twins calm, secure and happy, or even, at the very least, vaguely co-operative, and believing that she must be at fault.

And so I learned, and changed, and our relationship changed, and our whole family dynamic changed. Don’t get me wrong: the learning and changing continues, and we both still get frustrated if a new challenge comes along and neither of us can figure out what the exact difficulties are and how on earth we’re going to get through them. The Cat and The Mum-Person argue, but he knows that I have his back and that he has my respect, and somehow we find our way through on that basis. His comfort zone is currently his home, with his Mum in it. (If things aren’t comfortable at school, his comfort zone is his bed, with armloads of cuddly cat toys and the blinds drawn and his Mum in the room, so I’m VERY grateful to his wonderful teacher and TA that I currently have the run of the house!) So when we do have to venture out, I know just how deeply he is calling on his reserves of strength and courage. In fact, every time we walk to the front door I hear the Top Gun ‘Highway to the Danger Zone’ song in my head, and I let him make furious noises, or growl, or swing his arm, or hold my hand, depending on what he needs to cross the threshold on any given day.

And this year, on the annual Easter holiday with my husband’s extended family, I saw how much we’ve changed. In his early years, The Cat would melt down - or, as I see it now, descend into panic and overwhelm - every time leaving the holiday home was suggested. We parents were mortified and generally forced him out for fear of 'comments' from the extended family, or I stayed in his holiday room with him, but with bad grace. I was so frustrated, driving six hours to sit in a house while everyone else enjoyed the beach, and I felt so sad that I couldn't find a way to make him happy in new places. Then I began to understand, and stood up for him, saying that I would skip the excursions and stay with him until he’d adjusted enough to feel comfortable going out. And when he did go out, we took photos of him in every place he'd visited, and photos of details there like car parks, loos, paths to the beach and so on. We also planned ways to keep him clear of the inevitable stress of about twenty people trying to pack their cars for the day and leave at around the same time. The result? This year, he went out on the very first day. The rest of the family went out twice a day, and he managed once, but he left the house every day for the first three days of the holiday. He then needed a ‘regroup and recover’ day, then the next day he went out again. (My heart is swelling just typing this!) This is text from the Facebook post I wrote that day:

So proud of [The Cat]. Day 4 of our holiday today, which is usually about the stage he feels able to leave the house and approach the beach, but he’s been out on 3 different occasions and only had one day in his room avoiding the noise and chaos of an extended family holiday with 19 people! He was out again this morning, which was a surprise after a rocky start to the day when plans kept changing. He’s chilling back here with me at the house this afternoon, but I’m feeling pretty happy that he’s been out more than half the time. If you want to understand autism, please start by understanding that an autistic child may well be the bravest person you ever meet. Every. Darned. Day.  Love this boy so much I could burst.

Why am I waffling in about this? What am I trying to say? A few things...

1. Don’t judge a struggling SEN Mum. We don’t know what we’re doing until we get some guidance, but then we can learn and change. If you are autistic and see a struggling SEN Mum, she would probably welcome your advice.

2. If you are that Mum, don’t give up. Learn to ‘listen’ to the behaviour you might find challenging, and keep on asking for help, looking for support groups, or reading books or blogs or the NAS website until things start to make sense.

3. Things change, for all of us, when we are open to learning. Lives change constantly and the learning process is unending because of this, but you can usually find someone who has been where you are, or where your child is, if you reach out far enough. Let's keep our SEN community strong and supportive, and let's also help the wider community to understand what we and our children are learning as we grow.

I'm a sucker for a mantra, so when things are tough for The Cat, I just repeat to myself, 'Love, respect, learning, hope'.

I wish these things for all of you. Love. Respect. Learning. Hope.

Comments

  1. You are an amazing role model of how things can be done - not perfect but good enough! Progress can be made but you must stick with it for the long haul xx

    ReplyDelete
  2. Yay! So happy to hear of the progress and success. You’re so right, learning goes on forever and we need to keep open minds xx

    ReplyDelete

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