Friday, 13 January 2012

Our Autism Journey is Never Ending...

...or AKA the post where I screw up!

Just when I think that I am handling things well and I'm on top of everything, I go and make a rookie mistake.

Gearing up to going back to school, I spoke with A about what he was looking forward to and we made sure that he was organised and happy about going back. Everything was going swimmingly until I remembered that on his first day back, there would be a major time table change. An outing that was postponed during the term before Christmas was rescheduled to the first day back. On the day that he was supposed to go Scotland was hit by what became affectionately called Hurricane Bawbag and the city of Edinburgh shut down for the day. It turns out that while it was very blustery, nothing much happened. No disasters happened and we went about about business as usual the next day.

During dinner, the night before A was due back at school, I remembered about the outing. I hadn't prepared him for it and we hadn't spoken about it. He became subdued and withdrawn, worrying about the logistics of the visit. I tried to answer any questions that he had to the best of my abilities. Still he was anxious about the event. There isn't much I can do in this case except remind him that it will be okay, that he can cope and that he would have a wonderful time. As always I have to wait until he process the information himself and relaxes. There wasn't enough time to do this. I had ruined the event for him.

Year ago this would have resulted in a meltdown. Sensory overload would ensue and ruin the occasion for him. Nowadays, it means he withdraws and internalises his stress. The effort that it takes for him to navigate a social situation is something that I'm always struggling to understand. The things that the rest of us take for granted are so difficult for him and other like him. Many people with autism are under or over sensitive to light, noise, heat, touch, taste or smell. These difficulties can have a big effect on how people with autism experience the world. People with autism also dislike change. We all in many ways don't like change but as you and I may understand that changes happen all the time and we get used to them, this is something that people with autism can find really hard and so the world can seem a very scary place for someone with autism. So, when things are the same it makes them feel a little safer because they know what is going to happen but when something changes, it takes some of that security away.

I don't think that he enjoyed the show as much as he would have if I had prepared him properly and he would have been relaxed about the event.

I am kicking myself. 


  1. Wow though, sounds like he has come a long way to not have a meltdown over such a big change to his schedule. Sounds like he is doing amazingly well and I hope he continues to find ways to cope with the stress. 

  2. It's hard for others to understand how such a small failure can have big effects for you both. You must be doing really well for these things not to happen more often, so we can all forgive you, as will he. Thanks for linking up, it was enlightening. 

  3. Oh, flower, stop beating yourself up. You're an incredible mum and we parents have enough to worry about. I think there comes a time when we learn that no matter how well prepared we ensure our SN kids are, there will always be a flaw in the routine. So long as we're there to pick up the pieces, that's all that matters. Take 5 minutes and remember how amazing you are. That love you have shines through, and A will always see that first.

    CJ x

  4. Thanks Rebecca. He is doing amazingly well which is why I feel so bad. X

  5. I have a funny feeling that I may be contributing more in future! It's such a small thing but the impact is often huge! X

  6. Thanks for your kind words CJ. You feel that you should be past making these mistakes but then you get caught out. The first week back is always hard but this made it worse. Xx

  7. No meltdown? That's progress! The fact that he can even go to something like that? AMAZING! It shows how much you've done to help him get to this point. 
    Don't beat yourself up. No one remembers *everything*. We're not meant to be perfect. 
    You're doing a great job, and it's a bloody hard one to get right all the time! *hugs* x

  8. Don't be so harsh on yourself. At least you remembered and had the time to chat and prepare him even if you aren't satisfied it was enough it was something, it gave him something to go on and he managed.
    I'm sure you're doing a brilliant job x

  9. Thanks Marylin! I feel like I had let him down! Onwards and upwards I suppose. xx

  10. Hope you're feeling a bit better about it now. Looks like you had some lovely words of support. 

    Just thought, if you get chance, come link this up to my Tuesday Tea and Sympathy linky, it's open all week and comes with virtual tea.

  11. I think you are being too hard on yourself. Sometimes there are ocassions when its impossible to remember everything or have opportunity to prepare our children. It doesn't mean we have cocked up or got it wrong. It means we are human and doing the best job we possibly can under very difficult circumstances. Your son is very lucky to have you. x


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