So when Oliver was diagnosed my husband, Leon was very angry. Understandably so. This was his first child (my older two are just mine) and he had hopes and dreams for him. I warned him after the diagnosis that there wasn’t much else the hospital could do for us but he had faith that they would be able to do something. We had speech therapy in place, a yearly “tick the box” appointment at the hospital, a GP, the EHC was starting and there was us. So after our follow up appointment after the diagnosis he expected a plan of action. He was disappointed- very disappointed. He expected our marvellous NHS to be able to do something. I had told him what it was like when Max was going through it and I think he expected more to have been done in 20 years. It didn’t seem the right time to say “I told you so”, and we do still think the NHS is marvellous its just if there is no breakthrough there is no treatment – well no miracle treatment.
I tried to tell him that it had improved, he’d been diagnosed earlier, he’d got support in place at nursery school (5 hours) and he had speech therapy. There is no magic pill, there is no quick fix. It’s a slow but hopefully steady move forward with a lot of hard work by everyone involved mainly me being his primary carer and stay at home mum. He’s still angry now, 3 years on. I wonder if he blames me, I’ve asked him and of course he denies it but I wonder if he does. We feel better if there/s someone or something to blame, we can focus on that.
I don’t know how to help. He isn’t a talker, he won’t phone the helpline, he won’t go to the group that Family Point have set up for post diagnosis, he won’t talk to me. The way he acts is like if he ignores it and treats Oliver like he’s neuro typical (NT for future reference) then by sheer force of will he will make it so. Sometimes Oliver is an arse- no doubt about it, but a lot of the time it’s frustration or lack of understanding or overload on Oliver’s part. I’ve told him to make his sentences short and to the point, one command at a time but he doesn’t do it. I think if he accepted that it’s not just contrariness on Oliver’s part and that he tries so hard but just can’t be or do what daddy wants he would get a lot more joy out of family life and be more relaxed, which would be good for everyone especially Leon.
Now I don’t want to paint Leon as a bad man, he isn’t. He is just struggling so much with this and I feel helpless. We’ve both been through quite a lot in our individual lives since we met, and he has had his own struggles to deal with, friends, family and moving etc. I just don’t want him to look back to this time and realise how much he has missed. I’ve started saying when things are not going well “however hard this is for us, imagine how hard it is for our boys. We struggle making sense of the world and we’re NT and can talk. Imagine having no voice” it helps me too. The boys don’t choose to be that way. We can choose how we deal with it. Accepting autism doesn’t mean rolling over and doing nothing. It means accepting that we have to travel a different path, and different is always interesting. We wouldn’t apologise for asking people to make allowances for other disabilities, so why should we apologise for our kids having autism? It’s not bad behaviour, we aren’t bad parents, we are doing what we can everyday to make the world more accepting on both sides.
I love my husband, I would love to be able to help him be happier. He has just got a new job which should be more interesting for him, it means the odd night away from home, which will give him a break from us, probably a full nights sleep but hopefully miss us all too. And all our quirks!
I’m not perfect, I have bad days too. I have Leon to talk to though so it makes it a little easier this time around. I had no one with Max, I know how lonely it can be dealing with it on your own. I just want Leon to know he doesn’t have to be alone through this. I’m right here to give him whatever support I can.