Sunday, 29 January 2012


I got a flyer about trampolining for disabled kids about 6 months ago and last week we finally went. There's actually a trampolining centre in a leisure centre across town, something I didn't know until last Thursday. They have a number of trampolines and have different groups attending. They offer 2 hourly sessions for children with disabilities, the trampoline is set in the floor so they simply walk or carry the child onto it. They also have a big mat which they lay on it so if they child lies down it's more comfortable.

Seth had fallen asleep in the car so was very unhappy when he woke up being moved into his chair. He screamed his displeasure for about 15 minutes as we walked through the leisure centre, waited with other parents and kids for our time slot to go in and then as I completed the form filling, explanation of Seth's mobility and payment for our 2 taster sessions. I was beginning to think that it was going to be a complete waste of time. However, I got Seth out of his chair and let him lie down on the floor; he began to relax. It turns out that one of Seth's class mates has been going trampolining for several months and so I started to natter with her mum. There were about 4 other children there and they took turns on the trampoline. Seth went crazy with glee when it was his turn; he lay on the mat whilst the guy in charge bounced springing Seth up and down. We're definitely going next week!

We can't take photos in the centre (children's privacy issues) but Seth's face was very similar to when he is on the swing:

(thanks to Gill for the photo :) )

Tuesday, 24 January 2012

Seth calls me mummy

Recently I've been thinking about how ambidextrous I'm getting. I eat breakfast with one hand whilst feeding Seth his with the other. If I got up earlier I could have my breakfast in peace first but that rarely happens so I end up with this juggling act. Sometimes I prefer it because Seth will often let his head fall forward and let the cereal dribble out. He does that a lot and sometimes I think he does it just for a laugh. Like sometimes he'll giggle and then deliberately drop his head forward and other times when my voice starts getting louder and probably shriller as I'm telling him off for doing it, he'll get a glint in his eye and do it again. Because whilst his head does tend to drop forward, he struggles to chew and he hasn't learnt to keep his mouth closed there are times when he eats perfectly. Little bugger! & if I'm shovelling food into my own mouth my full concentration isn't on him and I'm not being wound up by his terrible eating habits. Nonetheless sometimes I suddenly become aware of what I'm doing and how weird it is that I'm juggling these 2 spoons of porridge.

Times when we got out for a coffee or even a meal I'll often choose something I can eat one handed and I'll be feeding Seth a sandwich whilst spearing something with a fork with the other. Once I got out of sync and tried to give Seth the wrong thing and I stopped, confused, for a moment before swapping hands. Craig and I have got it down to a fine art now, I think. One of us will start chopping Seth's meal up whilst the other begins to eat and then we'll swap back and forth so that we both get to eat before it's all completely cold. Weirdly it's still worth the treat of going out to eat. I do sometimes wonder what we look like but not for long because I don't really care.

Oh, and Seth called me mummy for the very first time today. Normally Craig picks Seth up from my parents but he had to work late so I did it tonight. I was buckling Seth into his car seat and he looked at me and said 'mum' with an elongated 'u' and then after a very brief pause 'mummy'. Naturally I was a bit shocked, questioning that I had heard correctly but there was no doubt. It just tops off a weekend of cleverness where he sat on the floor, unsupported, for at least half an hour and then started lifting his legs up together and dropping them back to the floor with a bang and a giggle. He repeated this for several minutes thoroughly enjoying this new game. Firstly he's playing!!!! And secondly the control and strength he has gained to be able to do that is so cool. As if that wasn't enough on Saturday I was sitting playing with a friend's daughter on the floor and Seth was sitting with us. Although he was simply sitting and hadn't shown any interest in the other kids, Seth started laughing. When our game moved away from him he started to get upset. Again on Sunday, when Seth was sitting on the floor and myself and Seth's cousins were sitting with him as they played with some lego. Seth was obviously gaining enjoyment from being with them as they played. I wish I could get Seth to show more outward interest in other children as after they have said 'hello' and got nothing back they tend to ignore him and yet he obviously is really enjoying their company.

Friday, 20 January 2012

Who do they think they are?!

I spoke to our trainee social worker who carried out our core assessment. At the review panel at the beginning of January we were offered 3 hours a week Direct Payments. This is less than we had hoped for but means that we will be able to use this money to pay for someone to look after Seth 3 hours every week while Craig and I go out and have some 'us' time. Brilliant! Thing is I found out today that one of the reasons we only got 3 hours was because the panel decided that the work that we put in to make Seth independent was no different to a parent of any 4 year old. Can you believe it?!!! I know a couple of 4 years old who don't have additional needs and their parents don't need to spend hours trying to get them to hold a spoon or a bottle, or doing physio with them so that one day they might be able be able to walk or even sit themselves up, or move independently in any way, or trying to teach them signing or to choose an object so that they can actually communicate their needs. I'm offended that a panel of apparently social and health workers can say such a thing. The social worker was really apologetic and said that he had fought our case but had been 'torn apart'. He compared the experience to being thrown to the lions. Well that's nice, isn't it. What kind of a system is this?!

The other reason we only got 3 hours is that we had been offered the Babysitting Service and I had refused it on the grounds that it's only available evenings and I wanted more flexibility in choosing when I can go out. But apparently we can use our Direct Payments in conjunction with the Babysitting Service. It's a subsidised service; the babysitters charge £10 an hour- we pay half and the council pays half. I think they are just childminders - not necessarily experienced with additional needs but last time I heard you can arrange to meet with them first so that you don't get a stranger who hasn't met you or your child before turn up on your door. I'm still not really happy about it - with the Direct Payments we'll be employing a woman who works at Seth's school and so knew him a little anyway and has lots of experience dealing with special needs. But I'm willing to give it a go. It's all being reviewed in September anyway when Seth goes to school full time. For all I know that means that they'll take all of our Direct Payments away from us then. (Not without a fight though!!!!)

Monday, 16 January 2012

Seth isn't teething. We visited the very lovely lady dentist at the hospital in Wellingborough this morning (we went there because she is the dentist that makes the annual visit to Fairfields, Seth's school, and so already holds records of Seth's teeth). He has the full set already, no more have come through and none appear to be trying to come through. If he does get any more teeth they'll be his adult teeth and he is very young to be getting these and she should have been able to see signs on the gum if they were on the move. He had no swellings and no tooth decay so she couldn't tell me what has been causing Seth's pain at all.

The next step would be an x-ray and for that Seth would have to be sedated and she didn't have enough evidence to recommend that. So we are no further forward. Seth was much happier this morning so maybe whatever it was has passed but last week he was sobbing and screaming so something was hurting him. I suppose all I can do is take him straight to the GP if it starts again, and hope that it doesn't!

We've had the report back from our Core Assessment. We've been offered 3 hours a week Direct Payments to pay someone to look after Seth so Craig and I can go out and spend some 'us' time. Its very gratefully received! Now I've just got to find out how it actually works!

Friday, 13 January 2012

Some navel gazing and then more about Seth

My blog isn't the best written of blogs out there. I know the best timing for writing and sharing a blog and I know the best practice for the format of each post. I follow some really well written blogs and admire them. I was wondering recently whether I'd get a larger readership if I took more care of my blog; had properly thought out themes for my posts rather than being pretty much straight downloads from whatever is on my mind at that moment, or had more regular timings of each post etc etc. But then I realised that whilst having large numbers of followers is always nice for the ego the reason I enjoy my blog is that it is such a purging of emotion for me. I hope people that come across it find it interesting or helpful but I think I'd do this even if no-one was reading it. I think it's a bit likely counselling without the understanding nodding. So I think I'll stick with it as it is :)

Seth has been totally amazing these last couple of weeks. I've mentioned before that he's been using his hands more but we've been completely blown away by him recently. Last weekend he started trying to pick up shaped blocks and reaching out to hit a toy that made a tuneful noise when it spun. I just sat gobsmacked watching him. Then on Sunday he was sitting next to Craig and was obviously feeling hungry. With one hand he signed for 'eat' and with the other he patted Craig's arm. Seth even looked up at him as well. The school also reported that when given a bowl of water he splashed the water with his hands completely independently. He's really learning control!

On the downside Seth also appears to be teething which is pretty weird because he has a full set already and 4 seems a little old (or young depending on how you look at it) to be cutting teeth. He seemed to be teething over Christmas and this last week has seemed in such pain. Teething powders and painkillers aren't really cutting it (no pun intended) but I've managed to get a dentist appointment on Monday so we'll know for sure then what's going on, thankfully.

Thursday, 5 January 2012

Fighting through the fog

This morning Seth had another fit. I was anticipating it and after a while cuddling I still packed him off to school (I'm so heartless!)

Its the beginning of a new term and Seth always fits then. My belief is that it's because his brain is expected to work that much harder all of a sudden; coping with a routine again and lots of one to one cognitive and physical excercises and it freaks out. (Not that Craig and I don't do that but it's a lot laid back during the holidays!) This morning during breakfast (again, lots of Seth's fits happen whilst eating and especially during breakfast) Seth was actually incredibly 'switched on', really vocalising and moving his hands and arms and looking around. It was great but weird and I knew that a fit was inevitable. It's strange, and a bit sad, that when you're child is being more interactive you know that it's just a precursor to him spacing out and that it's going to be shortlived and that as soon as Seth manages to break free of the fogginess that must surround him all the time he's pulled back in.

That's how I imagine it anyway when I try to understand what life is like for him; when I have the flu and I'm trying to concentrate on something but my head feels like it's stuffed with cotton wool and everything is so difficult. That's the impression Seth gives me when he's got a toy or spoon in front of him and he's trying to move his arms and hands in order to grasp it. & that's how I think it is for everything he tries to do; think through things, walk, eat, speak. The good news is that he just needs to find a path through that fog to achieve something. The fog is very dense and it takes a long while to inch his way along, and it's very easy to stay where he is and just do what he's comfortable doing, and every so often while he's inching he gets an electrical shock (my idea of a fit) but with perseverance a path is forged and a new activity learned.

Sunday, 1 January 2012

Seth has glasses!

I took this photo in the opticians immediately after the glasses were fitted. Over the following days we have been able to see a difference in Seth. He is looking around more and smiling. Even when his head drops down his eyes look up whereas before he would just look down and seem uninterested. He also doesn't seem to mind wearing them either, although he smudges then when he rubs his nose :). He's also talking more; responding to 'goodbyes' and 'hellos' but I'm not sure we can attribute this to his new glasses because I was doing that before. However, if Seth is finding it easier to focus on the world around him it's got to help his ability to understand and respond to it!!!

Not a bad start to the year.