Answering the phone

When I started this blog about Jake I thought that it would be a good exercise to record the days that we have with Jake so that I could try and give some idea of what it can be like to have an autistic child. That sounds terrible. It sounds like I could be writing about a badly behaved pet and I'm in actual fact writing about our dearly loved son with out whom we'd be lost. I mean that.

Despite the worries and the stress that can be associated with our situation I often think about what it must be like from Jake's perspective. Does he feel frustrated by not being able to communicate with us very clearly? There's no doubt that when he goes into what we call his "melt-downs" it's because he is very unhappy about something and NOT because he is being naughty. Something is clearly wrong in those situations and it can be so difficult to understand what it is that is actually wrong. Does he have a headache? Does he feel sick with a tummy upset? Is he constipated? Has he a sore throat? Does he just feel unhappy and doesn't know how to fix it? Does he want a particular food and cannot explain that to us? From his perspective it must be so very hard.

We're very blessed to have such a beautiful boy in Jake along with his sister and my other children. I don't want it to appear that I am in any way complaining about the situation here. However hard it sometimes feels for us it can't be as hard as it is for Jake.

One of the things I've noticed about our life now is our increasing reluctance to always answer the phone. We now choose more carefully depending on how things are in the house. Yesterday I was finishing up in the shower while N. was feeding Jake with a bowl of cereal. Getting Jake to eat cereal with milk included is a rare feat indeed and when N. was half way through the process the telephone rang. I wasn't able to get to it and no way was N. about to interrupt feeding Jake as the slightest interval would have probably made Jake lose interest.

Unfortunately timing has to be perfect in our household these days to not only answer the phone but feel confident that we'll be focused enough to hold down a meaningful conversation.

Radio Presenter Ken Bruce writes about his autistic son

There's an excellent article that was on the Mail Online website (A british newspaper) by a radio presenter who would certainly be well known to the UK population. He has a seven year old autistic son and so many of the things that he describes are the same as our experience of Jake.

He writes so well in this article that I can't strongly enough that it is a must-read for anyone that has an interest in autism. The article canh be found here. Go there now.

A buggy for our autistic son

Ooops, I've let this blog slip a little recently. Actually a lot since it's a month since I last posted anything about Jake.

Jake is fine along with the rest of us although the last few weeks have been typical of the kind of days (and nights!) that we have with Jake. Some good and some not so good although rarely very bad.

This morning he was awake before 4.30 am and so later in the day things will get to be pretty tense because his mood might be very uptight and difficult to calm but we'll see. He'll probably take a nap this afternoon and with some luck that will tide him over to the evening and bedtime.

We've been wondering about whether we should get a big child buggy like some other special needs or disabled children have. Jake is a very difficult boy to walk anywhere with as he simply doesn't want to walk. We don't have any reason to think that there's a physical reason for his reluctance but quite simply once we start to walk around a store or anywhere he demands to be picked up and if he isn't he will sink to the floor. It really takes it's toll on us and makes us think twice before going anywhere.

Some will look on and say that we need to be tough on him but we've tried that and I refuse to start smacking the boy because he collapses to the ground even if it is a tantrum. With Jake having no communication skills at all we are always having to guess his needs and also guess at what he understands.

So as a step in trying to get some kind of normal life back for us we're thinking of maybe acquiring a buggy suitable for his size. I guess we still aren't quite sure yet but it's becoming a more distinct possibility although a reluctant choice to have to make.