Jude, anxiously waiting for his bus. I told him to come and sit in the car with me (I was dashing off straight afterwards) and he felt so uncomfortable because we normally wait in the hallway! Look at his face!
As I sat in Jude’s room last night whilst he screamed, tried to hit me, banged his head against his pillow, kicked his legs and generally went a bit crazy, I retreated into the depths of my overactive mind and started to think. It’s a great way of passing the time during these episodes, when there is literally nothing I can do to help him but just be there. Anyway, I started to appraise all manner of situations and I compiled a mental list of all the emotions I pass through during one of Jude’s more extreme moments.
- Dread. When you first here one of Jude’s trigger comments or see him throw something and look at you in that unmistakable way. Oh no, where are we going to end up this time. My stomach literally drops and I feel dread at the realisation that yes, Jude is still in this place. Still can’t control himself.
- Anger. I’m not going to lie, I get angry at Jude for putting us through this crap yet again. All for nothing. Why is he doing this? He was perfectly fine two minutes ago and now he’s thrown his duvet on the floor and is screaming at me. I also feel anger at myself. Have I done something wrong in the almost eleven years that has made Jude so entirely unhappy? Obviously, I know I haven’t but you can’t help but speculate.
- This anger often morphs into utter despair, why me? Why have I been chosen to have this life? It sucks. I feel like I’m trapped in a global prison that I can never escape from because I always have to come back to being Jude’s mum. Our lifestyle means we never go out en masse like a normal family. Nothing is normal, why can’t we just be normal? Pity I think is the word I mean. I pity myself.
- Pity can turn into upset and negatively spiralling depressive emotions. I’ve had enough, I can’t do this any more. Can I run away? No, Elsa and Emmeline need me and that would be completely selfish. I need them, I couldn’t do that. I also feel upset for Jude. He realistically can’t help doing what he’s doing and I know that, deep down. I feel upset at how it must be horrible for him to have this overwhelming rush of feelings that he literally can’t suppress and that explode out of him like a volcanic surge of molten expression.
- Then I hear Elsa downstairs and I feel sorry that I can’t be with her. I want to be down there chatting, eating crisps and finding out about her day. I feel sorry that I didn’t see Elsa last night and didn’t get to put her to bed because of Jude. I feel sorry that she couldn’t sleep because of his screaming. And most of all, I feel sorry that she didn’t bat an eyelid because this is normal to her. How disturbing is that? Elsa has grown up with so many bizarre normals.
Our little Elsa Pelsa
- I feel exhausted. Physically because Jude is a big boy now and when I have to hold him then it takes all of my strength. I also feel emotionally and mentally destroyed. My brain can’t rest during one of these melt downs as I need to compound all the possible tactics I can employ to help diffuse the situation as well as evaluate all the possible outcomes of my actions.
Then he falls asleep and I feel relief that we’ve survived another melt down. He look so peaceful when he’s asleep and I realise that I don’t hate him, he’s my little boy and I need to help him. I feel numb from all of the above emotions and I feel sick and anxious that he might wake up and do it all over again.
He didn’t last night, thankfully. He got up to go to the bathroom twice but then this morning when he came downstairs, it was as if nothing had happened and he was smiling, asking us if he could have some mango with his breakfast.
This morning, I asked him why he was upset last night. He basically told me that his father didn’t give him sweets last night after their fortnightly dinner date and he wanted them (not in so many words but this was my deduction judging by the words he was saying.) I have told his father not to give him sweets because he gets obsessive about them and he has always ignored my plea saying that “they won’t kill him.”
It’s scary isn’t it? How easily a child with autism can fly off the handle and because of something so simple? Jude builds something in his mind, such as “oooh tonight I’ll get sweets,” until it’s his entire focal point for the whole day. Then when it doesn’t happen BANG, he’s emotionally gone.
Anyway, I don’t want anyone to feel sorry or anything. I just thought it would be interesting for people to see how it feels from the perspective of a SEN parent during one of these moments.
Needless to say, I’m back on the council’s case…I was passed through three departments this morning trying to find my Case Worker but she wasn’t there. She’s calling me back today.
The Tale of Mummyhood