Tuesday, 4 December 2012

Songs, birthdays and moving

I have 2 songs I'd like to recommend that you download; both are available on itunes and each under a quid.

The first one was forwarded to me by a friend. A family have created a song to help raise funds for a little boy called Lewis who has cerebral palsy. You can get all the details if you visit It's got some impressive names associated with it.

The second song was created by Seth's school; Fairfields school. The money raised will go towards much needed equipment for the school. Apparently, every single child has contributed in some way to the song; either in voice or playing an instrument. You can actually hear Seth's dulcet tones for a couple of seconds at 55 seconds into the song. Apparently, he had great fun making his contribution. He had headphones on and was at a microphone singing away, listening to himself and bouncing along to the music. We downloaded it the other day and he immediately stilled, cocked his head to listen and then started singing along to it. Go to itunes and search for Fairfields school or the song itself  'tell me it's Christmas'.

So anyway, there's my plug.

Seth turned 5 this Friday - 5!!!  He had a great time. His class had a party (Seth shares his birthday with a classmate) and then on Saturday he went horse riding and then had a trampolining party. So quite a busy and exciting time for him and he lapped up all the attention.

And we finally move this coming Friday. We can't move for boxes and I'm feeling a little overwhelmed with everything still to do but I'm very excited. Seth will have a downstairs bedroom and shower room and we will have loads more room. We'll be in a village and I'm already anticipating the nosy neighbour we've been warned about!

Thursday, 8 November 2012

Broken hearted

This Monday we had our annual consultants' appointment. It was going well. At the end Craig asked a question that has been on his mind for some time, especially after Sean (a little boy just a year older than Seth whom he had been a class mate of) died. He's been wanting to know how life-limiting Seth's brain damage was and what life expectancy he had.

Our doctor replied with his usual candour that apart from life-threatening epilepsy and complications derived from scoliosis and feeding problems (none of which are an issue for Seth certainly at the moment) Seth had a good 3 or 4 decades life expectancy. Craig didn't really react to this because, given his pessimistic outlook, this was initially good news. However, as I have been worrying about how Seth was going to cope after we were long gone and he was old and grey it came as quite a shock. 

Given that many of Seth's peers have a life expectancy in single figures, knowing that Seth should live into his 40s is perhaps something I should be grateful for. Well I'm not. It brought back all the feelings of grief I felt when we began coming to terms with Seth's additional needs and I've been struggling with it all week. It didn't help that last week it was confirmed that I'm well into the menopause which not only makes me feel very old (I'm only 41!!!) but banishes any vestiges of hope of getting pregnant again.

However, I'm beginning to feel more pragmatic about it; none of us know what will happen for any of us. My brother died when he was 16 from a heart condition that no-one knew he had so I realise that life can be taken at any time. The older Seth gets without his epilepsy developing into anything more serious, the less likely it will happen. & whilst he does hunch over his posture and movement is improving so that his spine may continue to develop correctly. The health risks usually associated with a child with brain damage to the extent Seth has it simply may not be applicable. He has always had such a robust immune system and rarely has anything worse than a cold. It's like when I had to reapply for Disability Living Allowance last month. A clinical description of Seth bares no resemblance to the boy I see every day.

Plus much as Seth's consultant is a very experienced and caring man I've never taken his expectations for Seth with more than a pinch of salt, deciding instead that we'll carve our own way. So I don't see why I should start now. It's more important to take each day as it comes rather than worry about what the future may bring.

And here is exhibit A, rare photos of Seth trampolining:

Monday, 29 October 2012


I've always talked to Seth; telling him what I'm doing as I'm doing it (if you're visually impaired it helps to be told what is/about to happen) or just chatting about stuff. In the last year he has become more and more vocal and is range of sounds has increased so it does sound like he's talking away even though we have no idea what he's actually saying. Seth's new teacher advised us to copy his sounds rather than just talking back to him. When I started doing it Seth went quiet and wide-eyed in surprise. But then he gets more lively and we turn take his sounds. If we're out it does sound  bit weird to be moaning or grunting at my son! But he enjoys it and obviously gets more out of it than me just talking normally to him. Apparently us copying him should encourage him to copy us and so encourage his speech. It feels like he's so on the verge of speaking. His sounds so much like words sometimes.

It's the same with his walking. Seth has begun to 'bum shuffle' which I'm very proud of. He still doesn't seem to have a destination in mind, just enjoying movement for it's own sake. & if he's sitting on my lap he'll wriggle until he can slide off to stand on the floor. It just feels like I could let him go and he'd just set off. But if I let go he'll just fall sideways or forwards; he just doesn't have that balance. But I'm seeing weight bearing on his arms, even if it's only a little it's still a hell of a lot more than before. And if he's gained balance whilst sitting then why not whilst standing?

& then there's the feeling. Driving home from school last week I noticed that Seth's right hand was out flat (not clenched like usual) and he was stroking the material on his car seat. I commented on it and he moved his hand to his leg and started stroking the denim giggling.

It made me catch my breath with the beauty of the moment. 

Saturday, 22 September 2012

Back to school

Three weeks have passed since Seth started the new school year in his new class. And, of course, my fears have been proven unfounded. He has settled in well; my main worry had been that he would be isolated in his chair but the teacher has all the children regularly on the floor 'mixing it up' so it seems that he's getting lots of tactile contact with the other kids. An example of the amazing stuff they do at his school; on Friday they had 'sensory dance' which which means 'dancing' your hands over a child in time to music. Plus a bit of a massage thrown in. I think all of Seth's class have visual difficulties so everything is all about feel, sound and smell. I can see how, even though his sight is better, Seth would really benefit from that approach to learning.

The only one downer is that Seth's class haven't been able to go swimming for the last 2 weeks and until they get enough volunteers to help then they won't be able to. It's a problem for the whole school - most kids need one-to-one support to be able to swim so that's a lot of staff. Not only does Seth love it but it's brilliant physical excercise. So, if you know anyone in Northampton who might be able to help then please encourage them to contact Fairfields School. Craig is trying to negotiate time from work but I'm not sure how successful he will be, it would be amazing if he could because not only would Seth benefit but it would be wonderful for Craig too, swimming with Seth is such a joyful experience.

Today was the first horse riding session since the summer holidays. Seth sat so well, keeping his back straight and head up for a lot of the time. I was very proud! Then we went to look at a bungalow. It's looking like we might have actually sold the house! We had a surveyor around last week so hopefully things will be moving on. We're looking for bungalows to rent and the one we looked at today was actually a dorma. Lots of room on the ground floor and Seth would get his ground floor bedroom next to the bathroom. But Craig and I would be upstairs, albeit with our own en-suite bathroom! But the whole point of looking at bungalows is that we're all on the same floor or else we might as well be looking at houses. Hmm it was big though, lots of space with a nice large kitchen. We'll see.....

Friday, 7 September 2012

Holiday memories and lovely photos of Seth

Well the holiday was amazing. Seth was the best; he was unfazed by the flight there, the long car drives and the changing accomodation. We had a fabulous relaxing time which is still with me despite slipping back into normal routine. Long may that continue!!!

Sunday, 5 August 2012


We flew into Seattle yesterday. Seth was amazing. The flight was over 9 hours and when we arrived at the condo after getting through customs and collecting the rental car it was 8pm which was very very early in the morning UK time. Seth had only napped on the flight and stayed awake and mostly excited once we had landed. Once arriving he fell asleep immediately and woke up just thirsty at 4 this morning and then after a drink simply went back to sleep, he didn't cry at all. I'm so proud of him, he's just taken it all in his stride.

We've got a view of the space needle one side of us and Puget Sound on the other. Pike Place Market is a couple of blocks away so we'll be going shopping for fresh fish and veg later. The flight was definitely improved by having the car seat which we borrowed from Lianne, thank you xx but the onboard facilities were rubbish. None of our entertainment centres were working so couldn't watch any movies, instead they offered us a newspaper and magazine!! luckily we both had books and entertaining Seth to keep us occupied.

Saturday, 28 July 2012

Woman on the edge

Seth's headbanging is back again. It seems to coincide with his being tired and is obviously him not getting/doing something he wants. He can suddenly start doing it moments after being giggly and happy and he will continue to bang his head harder and harder until he is picked up. The other day I had put Seth to bed and he poo'd almost immediately. As I'm trying to potty train him I quickly scooped him up out of bed and put him onto the potty. Nothing was to hand so I had to lay him on the bathroom floor so I could get wipes and a nappy. As I left the room (I know, not having these essentials in the bathroom wasn't very smart!) Seth starts banging his head against the floor. It's carpeted and I'm trying not to positively reinforce the behaviour by always responding, and anyway I really needed to get a new nappy so I quickly dashed for what I needed and in the meantime he just kept banging harder and harder. By the time I reach him he's started sobbing but he won't stop banging his head. I can't pick him up because he still needs cleaning him up so I hold his head against the floor to try to stop him lifting it and, I tell you, for a child who doesn't have strong muscles to keep his head up, he certainly had plenty of strength straining against me.

I'm sobbing, too, by this point because he must be really hurting himself. I can't let go of him to clean him, and I can't pick him up so for several minutes we're stuck like this. What made it worse is that in between the sobs he began laughing. The sobs I can understand, but the laughter? In the end I manage to clean him up and scoop him into my arms where he continues to sob and laugh. I tuck him back in bed and it's all over; he falls asleep and Craig comes home to find me an exhausted wreck from an incident that lasted no more than 15 minutes. I felt like I was walking on a high wire and it was wobbling. Yet just 2 days later I'm okay again.

I have been filling every spare moment with decorating the house; we want to move to a bungalow and I decided that putting the house up for sale before we go on holiday (we are in America for 3 weeks - yeah!) was a great idea. So I have had 3-4 weeks to do all the stuff that we haven't done for the past several years. I do work best with a tight deadline but this really has been pretty ridiculous. However, the for sale sign goes up Monday and next Saturday we fly so I can hand over the house keys to an estate agent and we don't have to worry about it again. & now that the bulk of the work is behind me I feel like I've made it along that tightrope and I'm on solid ground again. Well mostly. 

Wednesday, 18 July 2012

the end of a school year

It's Seth's last day at school tomorrow, before the Summer break. I know I'm going to cry; I've been tearful all week just thinking about it. It's the nursery/pre-school class so he was always going to be changing class this September but Seth has had this teacher and a couple of the support staff since he started January last year and I've gotten attached.

Seth isn't going to the next 'normal' class that's the next age up. The chosen classes are 'needs led' so Seth instead is going to a mult-age class that is for mult-sensory difficulties. Its one of the boxes you can tick when filling out the many forms that we seem to have to complete, when having to define your child's difficulties. That was one of the few that I left blank but I am assured that Seth fits that category as well. We went to see this new class and meet the teacher. She is an amazing woman with tons of enthusiasm and really knows her stuff. The hope is that her multi sensory technique will encourage Seth in communicating and interacting with his world more. But I still left there and cried like I haven't done in a long while now. I'm upset that he needs to be there, upset that apparently he got upset when he visited the class last week, upset that he is going to be in a class where most of the children sit in their own supported seating and so he won't get that physical interaction with other kids. I'm upset that his current teacher is concerned with his progress which is why she recommended this class.

Yet I'd rather he be there with a teacher that has so many fantastic ideas about how to interact with her kids on the level they need. I've just got to keep it together tomorrow when I pick Seth up from school.

Monday, 18 June 2012

Seth loves his riding

Now with the privacy settings amended so you can actually watch it!!!

Friday, 18 May 2012


Wow, has it really been over a month since I last posted?! I've missed it but haven't had the right space-timewise or headwise- to do it.

Seth has, for the most part, been totally awesome these last weeks. We went riding which he spent the whole time giggling his head off. At trampolining, every time it's his turn he simply cracks up. People around him can't help but laugh and smile. We're thinking of recording it and selling it as a mobile app of good feeling. Or a ringtone, how cool would that be?!

But even more than that, his sitting is improving and he's watching and copying the people around him. At trampolining during the warmup we stood in the circle of children and when they began running on the spot he lifted his legs in turn. You can imagine just how overjoyed I was at this!

For me, I've realised that I'm still carrying around a lot of bitterness. It seems to be growing rather than fading away. Whilst scenes of women giving birth on the television used to make me cringe now I turn the channel over to avoid watching it at all. & I have difficulty hearing about others being pregnant or just having had a baby. Older kids are fine, I hardly every do the comparison thing any more; I think I'm truly comfortable with Seth just as he is. But pregnancy and newborns are a different matter! It's that hope and excitement the parents have, it actually causes me pain. But if I've accepted Seth as he is, then why is that feeling getting worse and not  better? I do think that if we'd been able to have another child then I wouldn't have such resentment (if that's what it is) but again I've pretty much accepted that, too. Or at least I thought I had. Whatever the reason I don't like feeling like this. Although it has given me insight into my Dad.

My brother died when he was 16 (I was 12). He had an undiagnosed heart condition which meant that he just suddenly died. It was in the evening and we were at home. The ambulance was called and my dad, after trying CPR, went alone to the hospital with him where he was pronounced dead. My dad went alone!! I suppose that in the panic and confusion they thought it best that my mum stay at home with me. So we sat and waited for dad to come home with news and he went through hell watching them trying to resuscitate his son. Afterwards whenever there was a hospital scene on the tv they always turned the channel over.

Friday, 13 April 2012

Head banging

Today has been simply amazing. It's the last day of the Easter Holidays and as I was working Chloe spent the morning with Seth. Chloe is a support worker at Seth's school and she babysits for Seth. She doesn't work directly with Seth at school so he didn't really know her before she started babysitting and a lot of the time she comes in the evening and only gets to say 'goodnight'. However, Chloe told me this morning Seth now recognises her and responds to her at school. That makes me very happy.

Seth was in great spirits today and spent a lot of it laughing. He was happy in his stander, he was happy in his chair. The only time he got upset was late afternoon when he fell asleep on my lap. 20 minutes later he woke with a start and shrieked. It probably took me another 20 minutes to calm him down. This usually happens when he falls asleep on my lap and I keep him there for a cuddle. I don't know why waking up there freaks him out so much.

It all changed at bath time. Seth was still happy splashing his legs in the water when out of the blue he starts slamming his head down onto the base of the bath (he lies flat in shallow water). Then starts to properly sob which is no wonder because that would have hurt. Obviously I immediately scooped him up and dried and dressed him as quickly as I could. Then offered him a drink which he guzzled down. So presumably that's why he head banged?!! Good grief!!!

Friday, 6 April 2012

The holidays

Well Seth and I have survived the first week of Easter holidays.  Monday was good; Seth and I enjoyed our day together. Craig phoned a couple of times to make sure I was still sane and was pleasantly surprised to find that I still was. Tuesday was a different story! We had friends over in the morning which was fab; a very noisy, full living room of children and Seth seemed to enjoy the hubbub. After lunch, however, he didn't want to do anything. He moaned and cried his way through the afternoon. I tried to put him down for a nap but that did not go down well at all! So by the time Craig got home from work I was climbing the walls. As Seth is growing up, whilst he's still a child he's obviously no longer a baby and I can see glimpses of the young man he's going to become. That would normally make a parent feel proud but it just terrifies me that he still cries when he wants something and hasn't begun to communicate in other ways yet. I'm trying different techniques; signing,  reference objects, buttons that when depressed 'speak' prerecorded words, so I'm not relying on him learning to talk. & now, after advice from another 'special needs' mum I'm simply holding out my hand and asking Seth to touch it if he wants something I've offered. This last one seemed to be working but the minute he gets tired or stressed it all goes out of the window, the one time when I truly don't understand what it is he wants. I know I'm probably expecting too much and I shouldn't push too hard but then I get that glimpse again and I'm terrified again.

Wednesday was not the best of days either. Craig and I attended the funeral for Sean who had been a class mate of Seth's and, before that, Seth and Sean had worked hard together in Conductive Education classes when we attended School for Parents (School for Parents was music, swimming and Conductive Ed. classes for parents and their special needs pre-school kids). The service was packed full of people from school and nursery as well as family and friends. I would have liked to have gone onto the gathering afterwards as there was a memory book which people were invited to add to but we didn't feel emotionally resilient enough to go. It did end up being quite a nice day with Craig and I spending a rare afternoon in the pub just talking and enjoying each others company, despite the sadness that overlaid it.

Today has been awesome. Seth enjoyed having both of us around and I felt like we really connected with him and enjoyed his company as he enjoyed ours. Its days like this that make me feel so positive about Seth's development but also so frustrated when we don't connect at all, which feels like a lot. I've realised that I pretty much eat all the time when I'm home so it's a good job I'm back at work next week and Craig is covering the 2nd week of the holiday. And before that hopefully we'll continue to have a positive, long weekend together, the three of us.

Sunday, 4 March 2012

Growing old disgracefully

Yesterday I turned 41. I'm not sure how I got to be so old and I certainly don't feel it (and according to everyone, luckily don't look it). I've only in the last 6 months joined a roller derby team which is a predominantly women's full contact sport; I start this now when my husband has stopped playing rugby because he felt he was getting too old (he's my age!). If you want to see what it's about watch this video (a random selection from You Tube). If you do watch it, a quick explanation: the girl with the star on her helment is a 'jammer', there are 2 teams on the track, each have one jammer who have to race each other and get past the opposing team who will try to block/hit her. The team scores points for each member of opposing team she skates past.

I celebrated my birthday by going to see Rammstein at Nottingham Arena. Rammstein are an industrial metal band from Germany and they were excellent. I've no idea what they are singing about but I was yelling along regardless! Again, I am so lucky that I have my parents to look after Seth overnight so we can still do this sort of thing (although we try to keep it to a minimum because I can't bear seeing how tired they usually look the following morning!!). Seth has just been full of giggles and bouncing today. We've also gotten through two weeks of new school term with no fits, which is a first since he started last January. He was great in trampolining on Thursday; he stayed sitting up on the trampoline for a couple of minutes whilst being bounced. Every time he started to fall, he'd correct himself and regain his balance, the whole time squealing with laughter.

It's all just pretty darn good. I wasn't too chuffed at being in my 40's but, I've never been one to do whatever is the 'social norm' so why should my age determine my behaviour any more than I've let anything else dictate my life. Craig bought me the graphic novel 'V for Vendetta' for my birthday. It's written by Alan Moore and whilst I've read, and enjoyed, some of his stuff I had only seen the film adaptation of this particular novel. It's the namesake of my roller derby team 'Vendetta Vixens' and I'm looking forward to reading it and being reminded to keep questioning, never simply accept what I'm told and keep striving for more for me and Seth.

Thursday, 16 February 2012

We have a breakthrough!!

Seth has successfully drank from a cup with a hard spout. He closes his mouth round the spout (not a complete seal but I'm not asking for miracles!) and sucks. This is because I am adding thickening powder to the drink so that he can control the flow better. Using thickening powder was suggested to us a long time ago by our lovely private speech & language therapist we had for a short time which we were able to get through Cerebra vouchers. She suggested it at the time because Seth tended to cough when he drank. After using the powder for a while Seth stopped coughing so in my wisdom I thought he didn't need it anymore so I stopped using it. However, the speech & language therapists at Seth's school recommended it again and lo and behold he's finally using a more grown up cup and he's not getting stressed about drinking. Yeah! I have confidently moved his bottles to the back of the cupboard.`

Sunday, 5 February 2012

Seth's school gets a new sensory room

No trampolining this week because Seth is full of cold and feeling pretty poorly. I kept him home on Friday and he actually let me make a nest on the sofa for him which he never does. He looked so cute wrapped up in his pyjamas and dressing gown covered in a blanket, full of calpol.

I saw this video on Facebook. You may have already seen it but it made me tearful, in a hopeful way. Its about a girl with autism who uses a keyboard to articulate what it is like for her and is now able to 'talk' via instant message with her dad.

At Seth's school I went to the official opening ceremony for a new sensory room. We have been fundraising for new equipment in the existing sensory room and the grandma of a child who attends the school got in touch with a friend who works for DHL. Reps came to the school and liked the project so much they decided to fund a second brand new room. A scant 2 months later and it was built. Seth's class were the first children to use it and it is very very lovely. DHL have now offered to pay for the remainder of the planned improvements to the old sensory room. With 2 fab sensory rooms the children will be able to use them loads more. Thank you DHL!!!

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.