The last few weeks have been full of harsh reality checks; those moments when reality just slaps you hard across the face. They hurt.
One of the big ones was the sudden unexpected reappearance of my gorgeous boy’s coping mechanism for anxiety. This is something we haven’t seen for almost two years – we are so in tune with him now and his needs, that we had sort of forgot about this. When he cannot cope with a situation, when it is all too much, he just sleeps. Snap. Asleep. No drifting off, no warning, no sound – just sleep.
When he was in his first nursery (a mainstream nursery that kindly offered additional support while we fought the system to get this funded), I would often collect him to be told he had slept all afternoon. It became the norm for me to wake him when I collected him. We never questioned it at this stage – we were still unaware that a diagnosis of ASD was around the corner – we put it down to his age and needing a nap.
After his diagnosis, like most parents, we read everything we could find about ASD and I was shocked to read that this ability to sleep – suddenly – was possibly a coping mechanism for him when everything was just too much. We started to see it when we entered large department stores. Debenhams and M&S were out of bounds for us. Bright lights, music, cash registers, people, small aisles, huge variety of products, rustle of carrier bags = sensory overload. We would walk in and within minutes, he would be on the floor asleep. Like most parents, we used our own coping mechanisms and I used to joke that his dad had trained him well “don’t let mummy spend money in shops”.
Over the years, we learned strategies to help us overcome his anxieties. We can now, much to hubby’s horror, shop in any large or small store if we put the right preparation in.
We also changed his special school and found a new one that is just amazing. Their insight into his needs and their ability to put in strategies (at school and at home) have made the biggest difference to us and we have reaped the benefits of this move in more ways that I can count. So the sudden reappearance of this sleep mode was heartbreaking for us.
He had agreed to stay with his grandparents for a few days – on the understanding that my hubby stayed there too. This was to give me the chance to paint some floors without the worry of little foot prints around the house. On the morning of departure, we had packed his DS, his 3DS XL, his Ipad and his dad’s PS Vita but as we went to get in the car, he asked for his PS3 and I said no. I didn’t know my hubby had said he could take it and I was in typical stressy mode that any small trip brings. He sat in the car screaming at me and anyone who didn’t know about his diagnosis would have thought I had the most spoiled brat ever.
As I drove off, listening to him berate me and thinking I was just being strong by not giving in, we hit the motorway and sudden silence. He had reverted to his old coping mechanism – it was all just too much for him. Had I known that my hubby had said this would be ok, then I would have brought it but my logic was he was only staying for two days and he had more than enough technology packed to keep him entertained – especially as the PS Vita plays most of the same games.
I couldn’t wake him by shouting his name – which was quite common when he was younger (I carried him so many times from a store to the car). I panicked and pulled off at the next junction (which is fortunately a mile down the road) and once we stopped, I was able to move into the rear of the car and wake him up slowly.
The whole experience broke my heart. It was a horrible reality check that although we think we have this sussed, things are going to happen and old habits will come back to haunt us. The hardest thing was the fact that I felt as a mum I had failed him. My refusal to spend another ten minutes disconnecting and packing a PS3 caused him so much anxiety that he couldn’t cope. I’m his mum, I am supposed to be there for him, I am supposed to help everything run smoothly. I let him down. That hurts more than the sudden reappearance.
Have you had a reality check recently?