I can remember like it was yesterday the day we were told that my son had Autism, despite it being a few years ago now. And I have to say that even though I knew in my gut that the doctor was going to confirm my feelings (and in many ways wanting that one word to come out of her mouth after years of feeling judged as a parent) that when it actually happened, well it hit me like a tonne of bricks.
I didn’t know how to feel, what to do, and how to react. I was numb.
The hubby and I went to the pub on our way home and we just sat there, speechless. I can even remember the food I ordered and didn’t eat! (Welsh rarebit.)
In the days that followed it began to slowly sink in, and really nothing had changed to be honest. Except deep down I felt a sense of relief that I had been right all along. And at the end of the day it was just a word. My son was no different, he was still him. Life ticked on as usual.
But what I did next I presume all parents do at one time or another - I found myself sat with the laptop on my knee, and I googled Autism. Despite having many years of experience working with children on the spectrum – well I just couldn’t help myself.
And oh my goodness what a load of crap there is out there on the internet. It’s enough to scare parents half to death. So much misinformation and ignorance to be found around every corner. I think if I had took notice of everything I read I would never have stepped out of the house with my son ever again. As it made me want to swaddle him up in bubble wrap to protect him from all the ignorance out there.
I also vividly recall sort of ticking things off like a list; well yeah he does this, and I suppose sometimes he does that too, oh but no not that - he never does that I said to myself!
And I remember stumbling across self-injurious behaviour and thinking thank God he’s never done that. Children who do that must be really ‘severe.’
Well, I was wrong!
That’s the thing about Autism I have since learned from my son. Autism kind of moves and shifts, it confuses and lulls you into a false sense of security. Its 'symptoms' can increase and decrease according to its environment. And ‘High Functioning’ didn’t mean my son got a free ticket to bypass the darker, more worrying and far less talked about sides to Autism – like self-injury and anxiety.
In fact I think the label he was given that day was highly misleading in many ways. Because I soon realised that his anxiety would increase to such a pitch that it would almost cripple him. Please don’t get me wrong I love my son more than life itself. Yes he is Autistic and I don’t want to change who he is - he is unique and wonderful I am his biggest fan believe me. But if you told me if I could lessen his anxiety somehow then my reply would have to be - where do I sign up? And if the doctor had told me that one day in the not so distant future my son would be so anxious about school that he would scratch his hand so badly it would bleed, then I would have cried and blubbered then and there in her office. Because no one wants that for their child, Autism or not!
So to my horror last year we found ourselves drowning in an ever spiralling whirlpool of anxiety that led my little man to become so desperate that he was indeed driven to self-injure at school. This vicious cycle engulfed him like huge waves lapping on the shore, and I just couldn’t drag him from the darkness. Day after day each new school day led to more and more anxiety, and so it went on - deeper and deeper he seemed to be falling and to my despair I could feel him slipping away from me. I was clinging onto him with my fingernails desperate not to let him go. He’s my baby boy, and every time he wanted to hurt himself it broke my heart. If would have swapped places with him in a heartbeat if I could have, I just wanted to take his pain away.
He became so consumed by his anxiety that he wasn’t capable of learning anything at school. Just the process of going to school was literally draining him. So we had to re assess everything and modify his environment drastically. His anxiety had shifted his world until he was unrecognisable as my little man. He would pace around the room like a trapped tiger in a zoo.
So we put his world on PAUSE
It was a long and slow journey to recovery, I mean months not weeks! But we had fun- we went swimming and dive bombed in the deep end. We walked the dogs and got wet and muddy, we baked cakes making a right old mess of the kitchen. And yes we learned maths and English - but in his own way, not mine - and slowly day by day he began to laugh and smile a little more each day.
He had started to push against the wave of anxiety that had been engulfing him, until thankfully his hands healed and he got better. Until now, well now it’s just a bad memory. He is at a new school full time and is genuinely happy. So his Autism has shifted again. He approaches things with less negativity because he’s happy.
I knew all along what my son needed to do to get better, the world needed to mould around him. And the people around him needed to be more flexible, following his lead, and truly accepting him for who he was. Then, and only then he would trust them to keep him safe.
But I am ashamed to admit this, at times I let my feelings be ignored and overlooked because I kept quiet when I should have been shouting from the rooftops. I tried to keep the peace, and I Iet others take the lead in meetings. I came away with regret for not speaking up more. As his mum it was my job to be his voice, to be heard and to be taken seriously - despite the hassle it would bring my way. I had to learn to put that all to the back of my mind, and shout out louder than them to get his needs met. I learnt this the hard way, I got there eventually after a lot of soul searching and tears. But that’s what us mums do, isn’t it. We would do anything for our kids - we slap on our make up, notepad and pen underarm and ruffle a few feathers!
The whole experience led me to realise that too often our kids are bent so much to fit into our world that they simply snap under the pressure, and this is where they encounter so many problems. Because too often the traditional mainstream education system our kids find themselves in is just so inflexible for kids like my son.
And now I will never take anything for granted or make assumptions about Autism ever again. I will never again think my son isn’t ‘severe’ enough to be effected like that. Self-harm/self-injury effect 50% children with Autism - including my son. And I strongly believe we should be talking about this more than we do. It shouldn’t be something that is only discussed in the GP surgery or at CAMHS.
So as hard as writing this has been, I have shared our story hoping it may have helped you. Don’t let your child be bent to snapping point like I did. It’s truly my biggest regret.
Mums and dads out there be strong at those meetings, be proud that you are brave enough to be your child’s voice amongst a room of professionals. Ruffle feathers if needs be to get your child the education they deserve. One that embraces their differences and moulds their learning around them.
We know what our kids need, we are ‘professionals’ in our own children. So believe in yourself parents and fight against the tide. My son is proof that there is always a light at the end of the tunnel. Our kids have so much to teach us about living in the moment, that the dark days can become distant memories I promise. And I am learning that my son has far more to teach me than sitting down and googling Autism on my laptop any day of the week, all I have to do is learn from him and be strong!