Today is World Autism Awareness day and people all over the world are trying to increase awareness in the hope of fostering better understanding, tolerance and inclusion for those with autism. My 7 year old son is severely autistic and despite living with this diagnosis for over 5 years we still struggle to cope with the enormity of it all and the impact his autism has had on our family. It’s frightening to read that more children will be diagnosed with autism this year in the developed world than with diabetes, cancer, & AIDS combined.

Since starting my blog I’ve been very lucky to have had contact with many other parents of autistic children and the sharing of experiences and information has been invaluable. Having an autistic child is not something that you really learn to cope with or get over. You are torn in two because you adore your child and yet at the same dearly wish you could banish their autism. At the same time autism makes them who they are. You learn to live one day at a time and try not to fear the future. If you’re interested and have 7 minutes to spare there is a video here made by mums of autistic children which gives a glimpse into some aspects of daily life.

I write about Toby’s autism in the hope that sharing my experiences will help other parents in the same position and also with the aim of giving anyone with no personal experience of autism a little understanding of the condition. Understanding helps promote tolerance in the general community and hopefully means less judgement and hostility towards people who are different and more inclusion generally. We don’t need to change autistic people, just our attitude towards them. As always I’m hugely grateful for the tolerance and understanding that always meets me here, but then you are an enlightened and big-hearted crowd and I love you for that. Thanks x

PS: I’ve added a new page with a little information on Autism here.

I have been a bit grumpy recently and, when I think about it, it has a lot to do with Toby’s toilet training. It’s been 10 long months of hard work without achieving very much and it’s wearying in the extreme!

When we first started to take him out of nappies back in early spring he just held it in all day which is not so great for although this shows excellent bladder control he wasn’t learning to go when he needed to. By the time he got home from school he was obviously bursting and I had to resist the urge to whip a nappy on him the minute he came through the door. Instead I used to shadow his every move and attempt to divert him to the toilet before a puddle situation developed. He doesn’t respond well to any adult directed activity so being made to sit didn’t impress him a whole lot (in other words he had supercell, screaming meltdowns) and most days we’re both in tears within half an hour of him arriving home and to top it all we ended up with a puddle anyway! In those early days he hated the toilet and I did too!

All through the summer when he was running around naked in the garden he’d just stop and water the grass and to honest there wasn’t much I could do about it although we did try and get him to wee in a bucket to get him used to the idea of weeing into a receptacle!

When the days started to turn colder as autumn arrived he was inside the house more than outside and there were around 6 or 7 puddles a day to mop up. Then we had a little breakthrough in that he started to wee over the side of the bath (although not perfect, a much better prospect than puddle mopping!) He started this all by himself and was quite insistent on shutting the door and having some privacy. I have a feeling I might be responsible for confusing things for him as I’d been saying in a loud and encouraging way ‘Toby wee wee’ every time he did a wee while having a bath each night.
My intention was to get him to associate the word with the action but I think it may just have reinforced that peeing into the bath is the way to go! I really should know better as I’m well aware that an autistic mind is often extremely literal!

Now I shall have to do a bit of creative thinking to persuade him to switch to the toilet! The fact that he is actually weeing on the toilet fairly consistently at school now is very encouraging but again this is common autistic behaviour – to understand something in one setting and yet be unable to apply the same thing in a different place.

With Toby I have learnt to approach everything in very small steps and it’s only when you look back that you begin to realise they were actually leading in the right direction – just not a very direct route! I dread to think about how we’ll tackle poo – for now it’s a nappy situation and I’ll need to marshal my reserves before we try and get him to use the toilet for that! Someone told me to expect toilet training to take at least 2-4 years and I have a feeling they could be spot on!

My main advice to anyone starting toilet training a special needs child is to de-stress your life as much as possible before you start and be prepared to go with the flow (sorry about the pun). The hardest thing is to keep going even when you feel that you’re getting nowhere. I’m glad though that after 10 months it finally begins to feel like we may be edging slowly closer to our goal of getting our 7 year old son out of nappies and I remain confident that we will get there one day.

Incidentally, while we’re on the subject I know that toileting issues are not limited to children with special needs and that many families experience the anguish and stress of continence problems. Recently Mary sent me some information about the wonderful work of the charity E.R.I.C .

“About 1 in 12 young people in the UK struggle with bed-wetting, daytime wetting, constipation and soiling (sometimes called incontinence or continence problems). At ERIC, we know how worrying and stressful these difficulties can be.

That’s why ERIC is dedicated to supporting children and young people, their families and health professionals. We provide information, confidential support, services and resources. Something can often be done to make a positive difference and ERIC is here to help!”

It’s worth taking a look at this video which does such a great job of explaining their work here.

Thanks for reading x