I am the proud mum of two boys, David, who is now 9 and Thomas, who is 4 nearly 5. Both of whom are autistic. David was diagnosed with ASD (Aspergus Syndrome) nearly a year ago now and Thomas is suspected to have the same condition although we haven't had a confirmed diagnosis yet.
As all parents with Autistic kids are aware, routine is the key. My kids are no exception. Before David was diagnosed, I had a feeling that he was autistic and so started reading up on what autism is and what it means for a child who is autistic. I started putting in place schedules and routines in written and picture form so that David could understand what he was supposed to do. Every day it would be a battle to get family to understand. Especially John, my husband. Don't get me wrong he is a lovely man and i love him dearly but when it comes to the children........clueless springs to mind. So routines and schedules that i was trying to put in place stopped working because i was the only one that was prepared to work at it.
I have a whole box folder of tried and failed routines and schedules. It begins to wear you down after a while. You feel as though you are fighting against your family in order to get the order that the kids need to flourish. I know and David knows that he needs a set routine on what he does in the day. I get the question every day "what's for dinner tomorrow mum" this will be at breakfast time. If i don't have an answer he gets confused he thinks "well she should know what we are having for dinner, how can she not know what we are having for dinner, is she saying that we are not having dinner tomorrow". All of these things go whizzing round his head. Until it escalates into a fist of fury or a crying session (but he can't tell you why he is crying). He gets absolutely consumed with the fact that i couldn't answer his question of what we are having for dinner the next day. And if i don't do what i said i was going to do and don't give him enough warning then he won't eat it.
With Thomas it is slightly different. He is not so concerned with asking the question but dinner has to be to his exact specification. He has to have everything separated. He won't eat a bolognise or cottage pie because it has mince mixed with vegetables and pasta mixed in too. So i have to separate it all for him. No sauces are allowed in his food unless it is separate. Red sauce is a small dollop in the corner and it has to be the right corner or he won't eat it. Drinks have to be in the right cup and he can't have anything that is hot.
Violence is something that Thomas is very good at. I have loads of bruises all over my legs and arms from when Thomas is having one of his episodes. It usually escalates quickly and once he is in that place it is difficult to get him out of it. John can't yet so it's down to me.
At the moment with Thomas his biggest issue is going to the toilet. Doing a poo is traumatic for him and we have been to the doctors and they have given us lidocan and lactose for him but he still has issues with it. For months now we have been battling with this. He won't go with John it has to be me and he will only go when his tummy is screaming in pain and it is a case that he has no choice but go. He is screaming and clenching trying not to make himself go but it has to. It is the worst moment for me and for John as we have to try to convince him that everything is alright but he won't hear it.
The last time this happened, a few days ago, i lost the plot. I couldn't cope no more. I was about ready to leave. As a wife, i felt alone as John doesn't understand what the kids need in the way of routine and understanding. Shouting at the them doesn't help as they don't understand what they have done wrong nine times out of ten. I finally broke down in a heap uncontrollable and the penny dropped for John. So John started to put together a routine for bath time incorporating a small period of time when Thomas sits on the toilet. John wrote it and timetabled it and i inputted with what i know. Then i jazzed it up with some colours and pictures to help both the kids. I did three copies, one each for the kids and one in the bathroom. David has taken to it like a duck to water but Thomas has decided that he wants to rip his up. But i will persist.
