April 5th, 2013

April 5th!  Autism awareness month continues …

Chris went away for a couple of days scuba diving this week – well actually it turned into just one day and night due to inclement weather.  One of us being away always throws things into disarray to a degree.  Chris’ folks generously offered to take the boys all day Wednesday and then overnight Wednesday night so that I could have a break.  How wonderful!!!

I spoke to the boys about the plans the evening before and everything was sorted and organised.  Clothes were packed, medication was sorted and labelled, and everything was ready to go.  My parents in law and sister in law arrived to collect the boys and James fled into his room in meltdown mode.  All of a sudden he experienced overwhelming anxiety about going with them.  He seemed very concerned about the sleep over so I assured him that if he didn’t want to sleep over, that I would come and pick him up early.  He was still stressed.  This is so difficult on many levels.  I felt so concerned that he was hurting the feelings of my parents in law due to his behaviour.  I know I can’t own his behaviour but it’s hard.  I then worry about handing him over to them in that state because I don’t want him to be really hard work for them.

Then because James was stressed out, Tom completed fell apart as well.  He thought that James was no longer going to go, so then he didn’t want to go either.  In the end, we all ended up getting the wrong end of the stick all together.  Eventually, both boys pulled it together with promises of adventures including mini golf (wow!) and they left happily enough.

So I had 4-5 hours completely on my own at home and I vowed that I would try hard to do nothing – absolutely nothing!  Do you know how hard that is to do?  I am so unused to doing nothing that I really struggled to just sit.  It made me realise that I need to develop some more down time strategies for myself and to actually schedule in time to just sit every now and again.  My mind goes to washing, ironing, cooking, work and all kinds of other ‘things’ that I should really be doing rather than just sitting doing nothing.  But I’m learning that there is value in just being and enjoying a few nothing moments every now and again.

James was worried about me all day apparently and really missed me, so my lovely mother in law brought the cherubs home to me apologetically at about 5pm – they were just too uptight to stay overnight.  You know, even a few hours to yourself is such a blessing and is so appreciated by me.  As I’ve said many times, we wouldn’t manage half as well without the support of our families.  Autism impacts on more than just your core family unit, it radiates out from your family.  Building a community of care around your child is so important.  Having family to walk the road with you makes such a huge difference and the relationships that the boys have created with their relatives is just beautiful to see.

4 thoughts on “April 5th, 2013

  1. Having had 4 children to cope with daily and been so ill for so long I completely understand the “doing nothing” I was so very incapable of doing nothing when i got home from hospital that I ended up damaging myself by doing the vacuuming! Learning to take time out for yourself can be difficult but I is a necessary thing.

    Our youngest is 16 now so I can only imagine how hard things can be for you.

    • Hi Julia. Your story is an extremely inspiring one and I have no idea as a mother how you managed it all. I know when I have a few days of being unwell that everything goes to hell here. How did you keep it all together? Amazing! I think making time for ‘you’ is a challenge for all mothers – you really have to fight and insist on having your own time. We learn from one another and we learn day by day. I’m learning to make my needs more of a priority …. Thanks for sharing xxx

      • It was difficult. My husband helped a lot but he had to work as well so it became quite the nightmare sometimes. There were days I couldn’t get out of bed and those were pretty bad, luckily the kids learned over time that they needed to actively participate in the family to make this all work. They each had their jobs and if they failed to do them then the “well oiled machine” would break down.

        They also had their own meltdowns as you can imagine but we managed to pull through it all in the end. Some of them made it through well others didn’t. The girls didn’t cope very well with it. Our eldest son left as soon as he was legally able to and is still being angry and doesn’t speak to me any more. Our youngest, our James, is the most amazing caring kid. The day I came home he said “Ok where are all the dirty clothes I’m taking them down tot eh laundry to wash them” for the first year after I came home he would phone me at 3.30 every afternoon to find out where I was, who I was with and if I was ok.

        One of the most heartbreaking things I have ever heard was the two boys standing under my bedroom talking with their friends and saying “Oh we cant do that because our mum is sick”

        I really feel for you Libby xxxx

      • Oh bless them! What a hard road for your kids. They must have been so worried. You don’t always get through these crises completely unscathed. I hope all your children will see in time that life is full of challenges but the important thing is to try and stick together. IWe all just do the best we can with what we have at the time, don’t we? xxx

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