World Autism Awareness Day - insight into Autism...

I can't believe it's a whole year since I posted on my blog! My new post is once again about autism. It's not written to make people feel sorry for me or because I need encouragement - it's written to help other parents of children with autism to know they're not alone, and to give people with no first hand experience of autism an insight into what life with autism can be like. This is written to coincide with World Autism Awareness Day 2014...

Last weekend Sam (who is now 10) went to his first ever sleepover at a friend's house. This was a massive step for him as he generally hates being outside of what he knows and never voluntarily wants to even play at a friend's house, let alone stay over night. However, Sam has made friends with a lovely boy at school, who is very similar to him and sympathetic to Sam's ways. This friend had a party at his house a few weeks ago and after enjoying that a lot, Sam said he would like to go to his house for a sleepover. The time was arranged between us mums and on Saturday afternoon we dropped Sam and his scooter off at his friend's house. Waving goodbye to him was really strange and he looked as if he might cry but managed not to.

The next morning (Mother's Day), we picked Sam up on our way to church. When I first saw him, I thought he looked really tired and when I found out both he and his friend had been awake at 4am, I knew the reason why! Not helped by the clocks changing and having one less hour in bed. Sam's friend's mum said everything had gone well and welcomed Sam to come again anytime. We left and headed to church.

Sam was very quiet in the car and barely spoke despite our questions about how much he enjoyed himself. He almost seemed in shock, which in a way, he was. After church (it being Mother's Day) we headed to McDonalds to get some lunch - this is generally a safe place to get food because all the children like it. Sam remained quiet and kept saying how tired he was. It emerged that having woken up at 4am, Sam was unable to get back to sleep so he simply lay awake until everyone got up at about 7.30. He said he missed me lots - especially in the middle of the night when he couldn't get back to sleep.

The afternoon consisted of the children flopping in front of a film while I did some sewing, and at 5.30pm we ordered food from our local Indian Take Away - my Mother's Day treat! We all ate together having cooked some chicken nuggets for Sam (who doesn't like Indian food) and combining them with popadums and naan bread which he does like. However everything was wrong, the chicken nuggets weren't right, and Sam got upset because he never actually said he wanted them in the first place (we simply cooked them to save him having to decide as decisions cause him major stress). He dissolved next to me in a heap of tears. It was obvious he was just too tired and stressed to cope with even eating so we simply got him ready for bed.

Sam fell asleep almost instantly (even without his prescribed Melatonin!), an exhausted wreck. At 3am he came into our bedroom because he couldn't sleep. He was really worried about going to school the next day and couldn't relax. I took him back to bed and tried to calm him down and encourage him. I said he could listen to his Ipod to help him relax but this only stressed him more because he didn't know which song to listen to, and he felt he had to stay awake to switch it off (the correct thing to do) even though I said he could fall asleep with it on. At 5am I heard loud sobbing. I went back into his room and found Sam in floods of tears - he'd seen the time and realised how long he'd been awake for and now this was stressing him out! I climbed into bed with him and hugged him tight. I told him not to worry about school and promised he could stay at home the next day. Immediately he relaxed and managed to calm down. I said I really felt he needed more time to 'recover' from being away from home and his tiredness. We lay together and chatted about his time away and he finally released some of the details about the time at his friend's house. This seemed to relax him even more. Nothing was bad, it was just all different to normal, and that's what he couldn't cope with. I left him much happier this time, relaxed in the knowledge that he could go to sleep without having to worry about school or being tired at school. I called the school at 5.30am (and left a message) to say he wouldn't be in. He slept until 9am.

Monday was spent relaxing at home, with normal food, drinks, drawing, books, TV and the Wii. He seemed back to his normal self again.

Something that to most children would be exciting, like a sleepover, becomes a massive problem to a child with autism. Being outside a comfort zone can be unbearable. As with everything to do with autism, slow and calm is the way to move forward. By Tuesday, school was not the massive issue it had been on Sunday night/Monday morning, Sam simply needed time...and lots of TLC which I never mind!

my book: FAITHFULLY PARENTING AUTISM

It's been a while since I blogged about my book and it's now available in more formats so I'm blogging about it again!


Faithfully Parenting Autism is the book I wrote to help fellow Christian parents of children with autism. It tells our story and offers practical help and advice on how to parent effectively, not excusing bad behaviour because of autism but helping parents to recognise where autism ends and bad behaviour starts.


The book has sold in the UK & USA and is now available as a paperback from lulu.com or amazon and as an ebook from lulu.com or through the iBookstore (prices vary). The book was also recently reviewed by The Good BookStall who were very complimentary & who now recommend it on their website (review below).


If you know anyone who could benefit from this, please pass on the details. Thanks!


http://www.lulu.com/shop/search.ep?type=&keyWords=faithfully+parenting+autism&sitesearch=lulu.com&q=&x=0&y=0




GoodBookStall Review:If only we had this book to hand when we first realised there was a problem with autism within the family!
Nicola Maybury has written from first hand experience of learning to deal with an autistic child. Her suggestions are full of sound common sense based on what she has learnt about the subject and what she has done to cope with the very special needs of her autistic son.
I recognised so much of what she has written. Page after page I thought, ‘Yes, that is just how it is – if only we had been able to read this book earlier’.
This is a Mother sharing what she has learnt, not pretending to know it all but offering a helping hand to other struggling families. Her guidance on teaching her son about Jesus and a loving God and her invention of a TOYT(Thinking of you token) are excellent and worthy of wide publicity.
If you think your child has a behavioural problem then it is well worth your while looking at this quite short but very clearly written title.
Available from www.lulu.com


Reviewer: Mary Bartholomew (07/07/12)