You know when I said I would post more back in September? Well, turns out I lied – sorry about that! I really like the idea of blogging and I really want to do it, but things just get in the way. Things like work, day to day family life, tiredness, laziness, and a general lack of motivation. I read a lot of blogs by people with similar lives to me, and I genuinely wonder how and when they find the time to do it. I’m amazed by their dedication and if I had a hat, I would take it off to them (although getting a hat to fit my “massive napper” would be a challenge in itself I can tell you). Anyway, I’ve made it back to the blogging app on my iPad and I’m going to try and say a few words about life in general over the past few months. A bullet point catch up if you like. So here goes.
Olly has made a hell of a lot of progress since I last wrote about him. His use of PECs has really developed, and we use it very effectively in our day to day lives. His PECs book hangs on our kitchen door and Olly will go to it and present us with PECs cards for everything from the iPad to a drink of juice, to a nappy change. It has really made our ability to communicate with Olly so much easier. We are still learning, and getting it wrong just as often as we get it right. For instance, before Louise went on PECs training a couple of months ago, we were taking things out of his PECs book that we didn’t want him to ask for, such as juice, and treats like chocolate. This was detrimental to his use of PECs and really confused him. Instead we learned that we needed a “not now, later” section at the back of his PECs book. It has all the cards that are not allowed at the moment behind a no entry sign. He’s getting pretty good at understanding and accepting when certain things are not allowed.
Olly has also started going to nursery two and a half days a week. He gets collected and dropped off by bus which he really loves, and I think that nursery has really improved his confidence. He has started to vocalise a lot more and occasionally we hear some words in context such as shoes, and bye. These do tend to come and go though.
Bed time has changed quite a lot. We took the stair gate off thinking we didn’t need it anymore. This was a mistake however. Olly started coming out of his room so frequently that one of us was standing guard at the top of the stairs for hours at a time and escorting him back to bed. We ended up putting a gate on the door to his room as he was going into George’s room and disturbing him. The new gate works pretty well so far, but who knows for how long. We take him to bed and read him a story, tuck him in and then say goodnight. He then usually gets straight out of bed and puts his light on and starts playing with whatever he can find in his room. We have slowly taken a lot of things out of his bedroom in the past few months as they had become items of distraction or even danger. He almost pulled his chest of drawers on top of himself (despite it being secured to the wall) so we removed that along with a bookcase and his room is now rather bare as a result. We are waiting to have a fitted wardrobe installed which we hope will help. He has also taken to climbing on his window sill after we put him to bed and he seems to find the cold surface next to the window really comforting as he always has a big beam on his face whenever we catch him like that. He does sleep well once he finally dozes off though I am happy to say. Whether that changes over time we can only wait and see, but we are thankful for the good nights sleep in the meantime.
Meltdowns can still occur at a moments notice and we often have no clue as to what has spooked him. These can be very distressing and dangerous especially outdoors as he is very strong and difficult to safely restrain even when there are two (or even more) of us. Today has some very good examples of that actually. After a lovely family Christmas together, we were feeling a bit stir crazy so we decided to have a little day trip to Whitby in North Yorkshire. Louise’s parents picked us up in their giant new tank (I mean car) and we had a lovely uneventful drive down there. We always still take the pushchair even though Olly is nearly 4 now and will often walk on his reins and hold our hands. Things started out quite well and he walked in this way along the seafront until we came to the point where we wanted to walk along the pier. Olly climbed into his pushchair and became most distressed. We persisted with our direction however. It’s always very difficult to know what to do in this situation. We like to try and give George as normal an experience as possible without subjecting him to yet another day where everything has to be planned around Olly. George is a great big brother and takes a lot of what goes on in his stride, but we have to be careful not to take him for granted and try to give him some normal childhood moments. So we pressed on. Olly calmed down a bit until we got to a very crowded street. He became hysterical and started thrashing around in his pushchair to the point that he almost destroyed it. We tried getting him out and I tried carrying him. This was also futile. Eventually we managed to take refuge in a tea room and once we got sat down and gave Olly his iPad and a juice, he settled down.
Something relevant to mention here is Ollys very limited diet. He pretty much only eats light cheese sandwiches in white bread with the crusts cut off. If the cheese is orange, he is repulsed. He will also eat fish fingers, chicken nuggets, chips, cereal, biscuits, chocolate, and that’s about it. In hindsight, we should have made Olly a packed lunch today but somehow we didn’t think of this. We ordered him a cheese sandwich from the tea rooms on white bread with the crusts cut off. It arrived and unfortunately the cheese was orange. We decided to try and offer it to him anyway. He took one look at it and made himself sick. Nice! To be fair, our fellow customers and the staff seemed to be of the sympathetic persuasion and saw the funny side which does not always happen. We cleaned Olly up and started making our way back to the car. Whatever had freaked him out prior to us entering the tea rooms was apparently no longer relevant as he happily walked back holding our hands.
We got back home mid afternoon and had a lazy balance of the day. Olly seemed happy to be home. I can barely imagine what he must have been thinking throughout the day though. “Where are we going”? “Why are they taking me here”? “Will I be coming back”? Poor Olly!
As I write this, it’s just after 9.30pm. Olly has been in bed since 8.00pm but he is still up. His light is on and Louise and I have been up to him many times already to resettle him. We have found him walking round in circles, on his window sill, and making various noises. Bedtime itself was not uneventful either. Louise was trying to brush Ollys teeth. He goes through phases of what he thinks of toothbrush time and the last few days he seems to have taken a dislike to it again. First mistake, trying to brush his teeth on the carpeted landing instead of in the bathroom. Second mistake, persisting with the toothbrush attempt after Olly had already retched once at the toothbrush being in his mouth. I was just about to suggest to Louise that this could be a “choose your battle” moment, but I was too late. Louise’s reaction said it all. Olly had made himself sick all over himself, Louise, and the landing floor. Great, just great. Operation cleanup took some time and we finally got the boys to bed. I really hope Olly is not becoming a vomity child as up until this point neither of our boys have been that way inclined. Time will tell I guess. Whatever comes next though, we will handle it as we always do. I sometimes wonder how “ordinary people” don’t get bored with a “normal life”.
So that’s a quick catchup for you all from the Rising household, and a taste of a typical day with typical incidents. The moral of today’s story is – never ever give Olly orange cheese, and until further notice never force him to brush his teeth when he has already gagged at the sight of his toothbrush. If you want your days to be vomit free, these are essential guidelines.
So, until next time!
Take care
Peter
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