Wednesday, 21 December 2011

A day of fun and laughter

I have had such a great day with Seth, today.

He spent Monday and Tuesday with Craig while I worked (it being the christmas holidays 'n all). On both days I left before Seth was up and I got home after he was in bed so I didn't see him at all. Yesterday I got the following email from Craig, who was listing to BBC 6 Music on the digital radio:

"Seth - house of pain bouncebouncebounce.

Seth - Stone temple pilots head lent (to the left) quiet appreciation - and singing along.


DJ Shadow not a lot of response need to work on the ambient hip hop."

and then:

"However Aretha Franklin - hand waving giggles.

I'm thinking cake reward.

Oh it's Run DMC there goes the tambourine."

This morning when Seth saw me I got such a lovely smile. He has been so relaxed today - he always seems to respond so well to having both Craig and I around. I know that probably seems like a stupidly obvious statement but its not always obvious that he is aware of us anymore that anyone else so we do need this kind of validation once in a while. We've done lots today - our social worker came round first thing to get our assessment paperwork signed off. Hopefully this means we'll have direct payments approved early January. Then we went to the hospital for Seth's annual eye checks. It was agreed that we'd try Seth with glasses so we should get those in the New Year. Most of Seth's eyesight difficulties are not physical but more to do with how his brain is processing the information his eyes receive, however, he does also have an astigmatism which makes it difficult to focus so the glasses might help with that. So progress there....

And we had lots of play and Seth has been just fantastic; one example of play was Seth sitting in his chair and I rolled a ball to him. I then took both of his hands and we caught the ball. I did this a number of times and then when I rolled the ball down his tray he brought both hands to the ball on his own and then rolled it around for a while. Naturally, I was extremely proud and he's been doing that kind of thing all day!!!!

Sunday, 11 December 2011

Seth having a great time

Yesterday Seth went to Riding for the Disabled again. It was the third time he's been but this time I video'd it. If you're wondering what's on his head its a woolly hat and then his cycle helmet! He so enjoyed it; he sat up and was looking at the volunteers walking alongside as they talked to him. It was just fab to watch.

Seth riding

Riding has now finished for the year and hopefully we'll get a fortnightly slot in February when it starts up again.

& while I'm playing with videos here is one from a couple of months ago of Seth loving the swing!

Craig pushing Seth on the swing

Thursday, 8 December 2011

I rock!

I know it's not polite to congratulate yourself but I just don't care. The Digital Marketing course that I've been battling through all year has finished! I took the two 3-hour exams at the beginning of this week and I am done. I actually really enjoyed doing the exams, the crazy revision really paid off and my life is mine again (well, you know - the bits that don't belong to Seth :) ) I won't know if I've passed until end of Feb and obviously it would be nice if I did but I'm just so happy that I completed it- it was such a hard slog and I almost gave up near the end.

Seth turned 4 last week and we bought him a cabin bed. It's brilliant. Of course he can't climb the steps to get into it (although I do walk him up them and then help him roll down the bed to his pillow). Because he's higher we don't have to lean down to pick him up and there is even a slide and I have a dream that one day he'll learn to use it to get out of bed himself. The best part, however, is the den underneath that I've turned into a sensory den with lights and sensory toys. I will sort out photos...

Tuesday, 29 November 2011

A most peculiar day

I hate traveling by train.

I've had to be in London these last 2 days; having to squeeze myself into the smallest space to avoid overly touching the person next to me or facing me, who is invariably a man who is sitting with a wide stance uncaring that he's encroaching into MY space.

Finally I reach my destination only to rush headlong along with the throng through the station, 'thinking I wonder how many calories I'm burning walking up these escalators'?!, just so that I can queue to get onto the next tube train that isn't already jam packed. I finally force my way on only to be crushed into this medley of smells.

Then as the train hurtles through this dark hole I can't help imagining what would happen if we would crash (although the nature of the narrow tunnel reduces the chance of derailment I suppose?!) and that we are packed in like sardines. At least we don't have to contend with the heat of summer on top of it all. The saving grace is that I have discovered that on the train, sitting by the toilet (as long as you're not actually facing the door) gives lots of legroom.

So, anyway, I'm finally on my home in my newly found roomy seat and my phone rings. Its an unfamiliar number. A man on the other end is asking me to move my car. Apparently he has a Peugeot 207 frequently parking outside his house and a) he finds it annoying and b) he thinks it's mine. It's not. I'm also rather curious as to how he has my number and why he thinks the car is mine. Apparently he got my number from the hairdressers. Now that's very possible but I still couldn't quite work out why that led him to the conclusion that it was my car. I think it means he lives on my street which means I could well be parking outside his house!!!!

Although not at that time, and not in a Peugeot. I was, in fact, parked in another street by the side of the train station. I only live about 10 minutes walk from the station so would normally not have done that and I also happen to know that it drives them crazy having commuters using their street as a car park. But I had to pick Seth up from my parents as soon I got back so was doing everything I could to speed that up (short of paying to park in the car park of course!!!) The train duly arrives and I walk briskly to my car...there are people standing near it. As I unlock the car a woman asks me if I had just come from the train. When I confirm her suspicion she then informs that her husband's car has had it's windows smashed and I am partially culpable for this act of vandalism. Apparently if I hadn't parked in front of their house he wouldn't have had to park on the other side of the street (albeit still outside their house!). She wasn't too clear how that would have prevented the vandalism but seemed a bit put out when I replied with a very unsympathetic 'I know you find it annoying that people park here but that really is a bit thin'. I wanted to follow up with an explanation of how I frequently have to hike half way down my street carrying my disabled son because I can't park outside my house! But I didn't think she'd be all that interested and plus carrying on the conversation would have just delayed me further so I quickly drove of.

Anyway, tomorrow is Seth's birthday, He'll be 4. He doesn't have a clue it's his birthday or that he has a bunch of cards and presents waiting for him. Neither Craig or I have any leave left and school is on strike so my parents have stepped in yet again and are looking after him all day. I at least hope to leave work early and spend an hour or two with Seth before he goes to sleep but how do you make a big deal of something when the recipient hasn't any idea? I'm sure that will be a whole other post...

Sunday, 13 November 2011

Mums of special needs kids who blog

My friends son is in a very bad way and after returning home for a few short days he is back in hospital. I say a friend, but she's just a woman whose blog I follow. But I read about her and her families good times, the stressful days and the days full of laughter. And right now she feels like a friend whose going through hell. I write a few platitudes on her blog and hope that it helps a little. Would it help me? I think so but mine is more emotional angst; it's been a long time since I actually felt Seth's life was actually in danger (and long may that last!!!)

Another mum I follow drove me to tears this week on a recent post from Mama Lewis. Stacie's daughter is also severely brain damaged and is going to start pre school at a special needs school. The post says, probably a lot more eloquently than I ever could, exactly how I felt when we first visited Seth's school. Mama Lewis also has a new website.

It was Craig's birthday on Friday so we've had a really treat-filled weekend. I took him to see the comedian Richard Herring Thursday night and my parents had Seth for the night so I could surprise Craig with a night at a hotel. Then Friday we picked Seth up from school and drove up to Derbyshire for 2 nights at a cottage. (it's times like this when I love working and having the financial means to do this!!) Seth did his usual and woke up every couple of hours but the cottage was amazing - I think the best we've ever stayed in so although tired we still feel rested. I highly recommend the cottage the Old Creamery, near Matlock

Tuesday, 8 November 2011

Riding for the Disabled

Seth rode a horse for the first time on Saturday! He's not even 4 and he's horse riding! They didn't have a hat small enough for his head so I brought along his cycle helmet which is a bit too big for him as well, actually, but they said it would be okay.

Seth had been extremely excited the whole drive there and then decided it was time for a nap as soon as we arrived. However, when the pony started moving he sat up tall and had such a grin on his face. Of course all the photos then came out blurred so I had to satisfy myself with a few snaps when they were stationary, and Seth predictably had his head down. The whole thing lasted about half an hour max and Seth had two people walking by his side holding him so that he couldn't slide from the saddle (one being his daddy), and another guiding the pony. They walked up and down the length once and then they had different activities for the children (there were 2 others during Seth's session), so they had to walk their ponies down one length, lean down and pick up an item that was placed on top of a cone and then walk back up and drop it into a bucket, and then go again to collect another item. Obviously, Seth was assisted in all this, however, there was one older, more able child, who was learning to guide her pony by coloured reins who was riding a whole lot better than I ever did during my few riding lessons as a child.

We don't have a date to go back yet as they are fully booked and we will have to wait for last minute cancellations, however, in the New Year maybe we can get a regular slot.

Thursday, 3 November 2011

A visit to great godparents

Last weekend we went to Leeds to visit David and Sheila. David is my godfather and so we entitled him 'great godfather' when Seth was born. I was born in Leeds so it always feels like coming home when we go up there (even though we moved when I was 3 or 4!!!). Soon after Seth was born Craig had a job opportunity in Leeds and we considered moving but I'm so glad we didn't. If we had not had our friends close to us over the last few years we would not have dealt with all that life has thrown at us half as well!!!

Anyway, the visit was fab. We were well fed and watered, taken to a farmers market where I drooled over cakes but managed not to buy any (I don't know where I got my willpower from!!!) and David and Sheila even babysat Seth so we could go out with Gill (their daughter) and Lee (her husband). It was weird cos the last few times we've been up has been to see Matt (their son) and Robyn (his wife) and it made us really miss them but they have returned to New Zealand and it's going to take more than a 2 and a half drive up the motorway to see them again. I think I must have my motherhood 6th sense running cos while we were at the pub on Saturday night, it was getting close to 11 and I announced it was time to get a taxi back. When we walked through the door we discovered that Seth had just woken up crying so it was good we hadn't stayed out any longer.

In fact Seth had woken up several times for the past 3 nights, and that night was no exception. We didn't really know what was wrong and then Sunday morning he fitted. He fitted several times during the day and spent the rest of the time drowsing or asleep. Sunday night he started rubbing his ear. On Monday the doctor said he had an inflamed ear and we decided to leave it a few days to see if it cleared up itself but he continued to have bad nights and then this morning he fitted again. So now he's on antiobiotics - the yellow stuff that looks like radioactive waste!!!! Hopefully he's now on the mend.

Seth and Sheila having a cuddle

Seth with me and Gill enjoying the playground

Seth and Craig enjoying the swings

Monday, 24 October 2011

Having fun

We've had the best few days. Seth has been so happy, responsive and talkative. Yesterday he enjoyed rolling by himself on the floor. I had him lying on his tummy whilst I played with a toy that makes him giggle. He then happily rolled himself onto his back! Then I managed to get him rolling onto either side, following a noisy, flashing halloween toy I picked up the other day. He actually rolled onto his left side to touch it and then rolled onto his right side to follow it. Very very cool!

This morning Seth found stickle brick pieces very entertaining. He was sitting in his chair with a few different colours and shapes on his tray and he actually used both hands to pick up and handle them. I was so proud of him. & then in the bath tonight he raised his right arm high and then brought it down to splash the water with his hand. He has been using his hand to splash the water for a few months now but tonight it was such a deliberate move and he made himself laugh.

Saturday, 15 October 2011

Riding for the disabled

We went to Riding for the Disabled this morning for the first time. It was to get Seth measured up for a hat and let him pat a pony. His head is too small for the hats they had but a solution was found when I said he had a cycling helmet. He started giggling pretty much as soon we got there; I think he liked the horsey smell. And he really liked it when Craig took him to meet one of the ponies! Apparently he rubbed his face against it, laughed and rubbed his face again. They are really busy but a cancellation means we've got another opportunity to go early November, and that time Seth will actually ride!

Tuesday, 11 October 2011

Patience is a virtue

I don't have much time for blogging at the moment; my exams are in 2 months and I've got LOTS of work to do before I'm even remotely likely to pass them. I'm already planning all the things I'll do when I'm not doing this damn course. Bizzarely one of the things I'm looking forward to doing is creating a quilt for Seth. I first got the idea of creating a quilt when I was pregnant and other than collecting odd bits of material and looking into how to quilt, I didn't get any further. Seth is mainly being just like any other kid; wonderful and terrible at the same time. He can light up a room with his giggle and he can set your ears ringing with his screams. Part of my trouble is that the drive that keeps me looking forward and encouraging Seth to learn new things also makes me impatient for development to come quicker than it is. Seth has made so much progress and I have to stop and take stock every so often to appreciate how much we've achieved. Plus I must show him how proud I am of him and make him feel good about who he is and what he can do right now, if I'm going to help him push some more boundaries. So, it's all about patience and taking things step by step. I need to focus on the next 2 months before worrying about anything else and I need relax and enjoy the place that Seth is in at the moment. Maybe if I relax more, so will he and we'll have less screaming tantrums (from him and me :)
I can't say that I'm always this balanced about everything but you know I am more days than I'm not! Read this post from a blog from another mum of a child with brain damage: Well said!

Wednesday, 28 September 2011

the good, the bad and the spending cuts

Last week I had my first real experience of social services. Because I was feeling utterly crap and was struggling carrying Seth around I asked (and was given!!!!) some help on Friday. A nurse from an agency spent the afternoon with us, helping with feeding and bathing. She didn't have to do a great deal because Seth fitted and slept most of the afternoon but it still meant I could go have a bath and not worry about having to leap out if Seth woke up. Seth is being a bit of a git at the moment. I think it's because he's just so tired by the time Craig picks him up from my parents but he just screams. He spent last week waking up several times every night so by the end of the week Craig and I were ready to snap each others heads off from tiredness. The weekend helped though - I actually spent Sunday on a go slow; doing those little tasks that never get done because you never seem to get time - and that was very satisfying. But then last night Seth just wouldn't settle and wouldn't be comforted for several hours. & then tonight again he was just sobbing. He's working so hard at school and coming home with gold stars on a regular basis and I think by the end of the day he's just completely strung out. Northamptonshire County Council are stopping free transport for under 4 yr olds to Seth's school. Yet again I am thankful that my parents pick Seth up when I'm at work. But what about those parents who don't have that kind of support?! Already there are children that had intended joining Seth's class in September that didn't end up coming because they knew the transport wasn't going to be available from October (apparently). So those are children that are now missing out; they wouldn't have planned to come if it wasn't the best place for them. Thing is I heard about this a week or so ago so went on the council website to find out if it was true and there was nothing about it. & then 2 days ago the letters went out to parents. Nice!

Thursday, 22 September 2011

Not the best day of a crappy week

The train pulled away as I walked into the station! I'm going to London for a course, its prepaid and the train fare is paid so I'm going. I feel queasy and tired and probably could even should be off sick but when you work sitting still at a computer and you feel ok sitting still you can't help but think 'well I might as well work'! But let me explain: I had a reaction to something I ate (or drank, I did try a shot of pocine and I wouldn't be at all surprised if my body revolted) at a lovely friends wedding Saturday night. Seth was with my parents until later on Sunday and Craig and I had the night and morning to ourselves. Only I spent 24 hours very very poorly. I have been to the doctor 3 times and been prescribed a heartening quantity of drugs. On the plus side I should have lost a decent amount of weight as I'm still pretty much only eating crackers, although at the moment my stomach resembles a basketball. Also my family have been amazing; my parents kept Seth til Monday night and then on Tuesday when I picked up Seth from school I went round to my brother and sister-in laws and Rob took Seth off to the park so that I could sit and chill with Pip. I struggle picking up and carrying Seth around so I phoned the Children's Disabled Team yesterday. They carried out the initial assessment and had determined we needed a core assessment. It was actually a very sympathetic report although had my name wrong and had spelling and grammatical errors throughout so I had returned it to them for amends (!) Anyway I called them to see if there was any emergency help they can offer and I've now got someone to help on Friday when I pick Seth up from school until his bedtime! The system works sometimes :)

Tuesday, 30 August 2011

Jesus Army and Ramadan noise-off

I live next door to a mosque and next to them is the Jesus Army (I may have mentioned this before). Well today is the the last day of Ramadan and I've had to complain a couple of times about the noise of people leaving the mosque at 11 at night. One time someone from the Jesus Army even knocked on my door to ask if I was finding the prayers too noisy. So anyway an hour ago there's a load of muslims milling around outside and you can hear their chatter but then I can hear the sound of singing so I look out my door and the Jesus Army guys are standing in the road in a circle, holding hands and singing. Someone is even playing a guitar! Good grief!

Anyway, so we had THE VISIT today. They were here for over an hour and a half. Craig says it went well, whilst one never spoke (as promised) the other was nice nice and very sympathetic although didn't seem to be able to handle it very well when he pushed the questions. ie why do we have to go through an assessment from the Disabled Childrens Team when it's already known that Seth is disabled and there have been various assessments, or what exactly is the difference between them and the previous group we were dealing with, or why do we have to go through all this beurocracy? Anyway, we've jumped through that hoop and shall wait and see what happens next.

I'm definitely in a better mental state than last week. Craig was away in Barcelona this weekend on a stag thing. I was pretty apprehensive about being on my own with Seth for 4 days but actually we had a great time. I managed to lose one of his shoes which is a real pain but that gave me the excuse to put his wellies on him and take him walking in the rain. We stood in a puddle stomping and splashing. Seth thought it was very funny! Plus I got pressies :)

Thursday, 25 August 2011

9 ways to always have hope for your child with special needs

My clever automatic 'blogthis' button isn't working so I'm doing this manually. This post came from a blog I follow (and cherish, to be honest).

Love That Max: 9 ways to always have hope for your child with special needs

Tuesday, 23 August 2011

The professionals are now scared of me!

We were supposed to get our initial assessment by the Disabled Childrens Team yesterday to assess our needs and whether we can get Direct Payments, which I had asked for. I had had a rather frustrating telephone conversation with the women due to visit where she told me that I couldn't use Direct Payments for childcare,even though I knew 2 mums who used it for that very reason and one person who was paid for babysitting through it. After my previous post/rant on this subject someone sent me the link to Directgov which spelled out that Direct Payments could be used for this reason so I was feeling pretty antsy about this woman coming into our house and assessing us. Anyway, it didn't happen. 10 minutes before the appointment I got a phone call from her team leader telling me that she had been called away on an emergency and they would need to reschedule. I'd already waited over a month for this appointment and I've been feeling pretty stressed anyway so you can imagine how pleased I was about that!!!!

Anyway this woman phoned back today and we arranged the new appointment for next Tuesday (happily Craig is home that day so he will deal with her, rather than me)but this time she insisted that it had to be an accompanied visit. She had already phoned last week and asked if she could bring a trainee with her and I had refused - I've allowed plenty of observers over the last 3 years and frankly I'm sick of Seth being someone's lesson. I'm also sick of strangers coming into my house. Now she's telling me that I have no choice because her visit has to be accompanied.

So I phoned the Carers helpline. The woman on the helpline explained that the confusion stems from me using the phrase 'childcare' which is meant for when you want to go to work, not for when you want someone to babysit so you can get a break. Okay, so now I understand not to use that phrase. And the reason why the assessor will no longer come on her own?......because she doesn't like me. She didn't like the way I spoke to her on the phone and she will only come if someone is with her. Good grief! Oh well, an even better reason for Craig to meet with her next week and not me!!!

Friday, 19 August 2011

Diary of a woman going mad

It's only my third consecutive day with Seth. On Monday and Tuesday I was in Leeds on a course for work learning HTML and CSS (how to build websites) so I haven't been into work all week and I miss it. Even though it's been crap lately and only last month I was feeling completely miserable about it. Cos when it's good it's brilliant and I love it. Whereas I'm only in my third day with Seth and going up the wall.

People tell me how well I'm doing with Seth, what with his brilliant progress, but the truth of it is that he utterly drains me. I try to go out to see people but 9 out of 10 times he gets stressed out and 'scrunches'. My term for when he grimaces and curls up as if he's doing an abs crunch. He does it when he's got a pain, but also for lots of other reasons. So if he's tired and wants to sleep but he's not in his bed he'll scrunch. Or often when I'm trying to give him a drink. & it often is followed by a sharp backwards head butt which if I'm not quick enough ends impacting with my face. I thought we had moved passed the scrunching when we are in other peoples houses; I started bringing his bean bag so he could relax. But yesterday he did it anyway, practically the whole time we were there he scrunched or protested so I just get stressed and can't enjoy the company.

So today I promised him quality time, just the two of us. A nice walk planned to meet Daddy at lunchtime and the rest just at home. It doesn't start well. He's bouncing his legs up and down in bed so I get him up. But as soon as he's on his feet he starts to complain which is really unusual. But if he wants a lie-in that's all good with me. So I help him climb back into bed and leave him for a bit. When I go up later and check on him he's on his side, scrunching and the pool of drool soaking the sheet proves he's been like that a while - probably since I left him. So I scoop him up and we cuddle on the sofa for a while. All good. Our cat jumps up on the sofa to say 'hello' and Seth laughs pushing himself to sit upright, signing 'hello' and even brings his hand out so he strokes her fur as she goes past. Absolutely brilliant! Then I ask him if he wants to eat breakfast, he laughs so I help him slide off my lap to the floor and ask him to find his chair and walk to it. So he turns his head to his chair and together we walk to his chair. Also completely brilliant.

I've started holding his spoon directly in front of Seth and asking him to use his hands. He then reaches out and touches the spoon or the bowl or even if he raises it in an attempt I then give him a mouthful. It's a great game and he seems to really enjoy it. But then he seems to be getting full and not keeping the food in his mouth very well so I ask him if he wants to 'stop' or 'more'. At this he completely kicks off. Is this because he's outraged at my suggestion that he should stop or is it because he's had enough? I've no idea! I know that I could keep shovelling the food in his mouth and he'd keep eating it but I don't know if he's actually full. He's screaming and shouting, so in the end I simply take the bowl away and clean him up, with him still screaming away.

As soon as he's in my arms having a cuddle he calms. We've borrowed Seth's stander for the school holidays so once Seth starts to stir I strap him in. He stands in this for 30 minutes or so every morning at school. Craig had him in it for an hour on Monday but every time I've tried it Seth has just protested throwing his head back and complaining, or falling asleep-his age old way of avoiding things. Today is no exception. On reflection I think I don't realise how tiring everything that Seth is doing must be. I probably should have just put him straight on his beanbag to relax. In the end, after 10 minutes of me vainly trying to get Seth to play with feel-y or musical toys I give up and put him on his beanbag. A couple of minutes later he's laughing and I'm knackered. He spends the next half hour on his beanbag wriggling around, a short break for a drink that he signed for and then back on it with his percussion mat so he can play the drums with his feet. I feel exhausted-all I want to do is curl up on the sofa, staring at the tv, eating something bad for me. Actually typing this has helped a lot. It puts it in perspective how much we do accomplish - while I'm doing it I feel like I'm getting nowhere. Its a lot of effort, half the time I don't understand what Seth wants, I'd be happy to simply play with him if I only he played in any traditional sense. He's upstairs having a nap at the moment, before lunch, but he's just as likely to be silently scrunching and not sleeping.

Instead I could be at work, having a laugh with my colleagues and tackling tasks with a beginning and an end. Next week I'm only in work for one day, but then the summer holidays come to an end and my life gets some balance again. Its funny that the phrase 'work/life balance' is used to mean that work doesn't encroach too much on family time, but right now I'm seeing it a whole different way!

Tuesday, 9 August 2011

Falling out of bed

Seth is now regularly falling out of bed. On the face of it that sounds like quite a bad thing but it also means that Seth is finally rolling over onto his right side, something that before a month or so ago he had never done on his own. It also means that he is systematically kicking the side of the bed out. Then he is rolling onto his front, getting his arms free and sliding out of bed. A couple of times we've found him kneeling against the side of the bed with his hands on the mattress which shows a real level of control to his movements.

The other thing is that we don't hear a thump, we don't even hear Seth crying. We simply hear him talking away to himself but with a 'I'm not totally happy about where I've found myself' tone of voice. It's only when I've gone up to him that he's started crying. We've also put layers of padding by the side of the bed so he is cushioned when he does fall !!!

Every time Seth falls out of bed, he's learning. About his body, about his environment and how to gain more control over his movements. Its brilliant.

Monday, 1 August 2011

Lyndylou, I'm glad you're all good - every time I followed the link to your blog it came up with an error page. But you're back, yeah.

Last week was a bit fraught. I applied for Direct Payments which other parents in similar circumstances were using to pay for childcare to give them some respite. At first I was turned down because 'they' were putting together a group of childminders who would provide babysitting at a subsidised rate. All good apart from it wasn't ready yet and they only offered babysitting in the evening. As we needed someone for a Saturday afternoon soon I found a lovely girl who works at Seth's school and has now babysat for Seth a few times. This girl, Chloe, also babysits for another child at Seth's school...and is paid through Direct Payments. So, I appealed the decision. It took a whole month for someone to finally phone me to arrange an initial assessment. After some questioning I discovered that this assessment involves them coming to the house, seeing Seth and talking to me. Then they write to all the various professionals. Then they take it to their management who decides whether we warrant another assessment. If they do, then another assessment takes place which takes around 2 months. What the f##k??!!! So I said, we have to go through all this just to get some babysitting paid for? And she replied that Direct Payments couldn't be used for childcare costs, they should be used for the child to be able to go out and do things. I told her that Seth does get out a lot and it was his father and myself that needed to go out!!! I got a bit riled as I had clearly explained why I was asking for Direct Payments in the first place and at no time had anyone told me it couldn't be used in that way, plus I knew 2 mums who did use it like that and I knew someone who was being paid to babysit with it!!!!!She didn't like me very much after that and kept repeating the same line and being sorry that I had been misled and that she needs to assess to determine Seth and our she's still coming over - in 3 weeks time as she can't fit us in sooner than that. As always seems to happen when I have to deal with the 'professionals' I'm left confused and frustrated!!

On a brighter note we went camping this weekend at a beer and cider festival near Chippenham. There was live music which Seth enjoyed and great cider which Craig & I enjoyed. We all slept better than the previous (and first) attempt at camping, although it still wasn't great because of noisy, rude youths in the tent next to us.
Still, Seth loved his airbed:
From Raising Seth
and chilling out in the sun on his beanbag:
From Raising Seth

Tuesday, 26 July 2011

Lyndylou where are you?

I'm trying out a new 'blog this' extension which will enable me to instantly share here stuff I come across that I think is cool. Just a small warning when posts apparently written by someone else appears.....

On another note, a blog that I'm fairly addicted to has disappeared - lyndylou I hope everything is okay and that you reappear soon

Sunday, 24 July 2011

Difficulties drinking

Seth gets stressed by drinking. He'll ask for a drink (or at least we're interpreting what he's doing as asking for a drink) but then will tense up and lock his jaw together when you try to give it to him. I know the obvious conclusion to this might be that he didn't want the drink in the first place but sometimes he'll open his mouth for the drink and then still tense up and then his teeth refuse to open to release the spout. Plus the behaviour we're interpreting is Seth putting his hands in his mouth and sucking on them so it's pretty clear that he's asking for a drink. This tensing involves tightening his belly and bringing his knees up; like he's doing a crunch/sit up, and he'll ball his hands into tight fists and shove them into his lower stomach. He does this when he's in pain or when he wants a nap and I haven't realised and taken him to bed and he does it 90% of the time I try to give him a drink. Yet other times he'll drink perfectly well, downing almost a bottle/cup in one go. In the last couple of weeks he'll even use his hands to nudge the bottle/cup to his mouth whilst I hold the handles. So he can definitely cope with swallowing the liquid and obviously enjoys the taste.

We'd moved on from normal bottles, to the bottles with teats that you have to bite to release the flow. Then I'd finally moved Seth onto cups that work the same way. I've actually bought and tried so many different types of cups when I was trying to encourage Seth from using a bottle that now I've got a bit of a phobia to trying new ones. One friend gave me a cup that releases just a few ml of liquid at a time but the spout is hard moulded plastic and Seth freaked out when I tried him with these before and so I'm ashamed to say I haven't even tried him with it. Another friend recently gave me a cup that has no spout but allows liquid to flow from any part of the rim, when sucked. I did actually try that once but most of the drink just ran down Seth's face so that's been consigned to the cupboard as well, for now.

I've finally accepted that it's more important that Seth gets drink inside him, especially with his constipation, than it is for him to be able to drink from a cup. So, we've reverted to the bottles. He still stresses with these sometimes but it's much less frequent. & if he does stress then he usually calms down and drinks pretty quickly. We were recommended to use a thickener in his drinks because Seth tended to cough when he drank and we used that for a while. We stopped though when Seth began drinking fine without the cough - we took this to mean he had learnt to swallow properly. & he didn't used to get stressed by drinking, this is something that has developed and gradually got worse over the last 6 months or so. I did ask to speak with a Speech & Language Therapist who specialised in eating & drinking but she was too busy to see us last term. So now I have to wait til September, hopefully she's be worth the wait!

Tuesday, 12 July 2011

Night time adventures

Seth fell out of bed 2 nights ago. He's got a normal junior bed pushed up against one wall and something that has feet that we slide under his mattress which in effect creates a side on the other side. Does that make sense? Anyway, I've obviously been encouraging Seth to roll and in the mornings I remove this 'side' and get him to roll out of bed onto his knees and then assist him to stand up before getting him dressed. It's great and he's doing more on his own initiative and gaining greater control over his body. He always needs a gentle nudge to start that first roll over though because he has always favoured his other side and has no problems rolling that way. During the night though when he's left to his own devices he's obviously practicing rolling onto his right side because I've woken up a couple of times to his laughter and found him kicking the temporary side.

Two nights ago we were downstairs watching tv and we heard Seth shouting. It wasn't proper crying but was more than just talking away to himself. So we went upstairs to investigate and found him face down half under his bed. He had not only rolled over onto his right side, but kicked the side completely out from under the mattress, fallen out of bed and then wriggled under it!!! So now he has his old cot mattress next to his bed so at least he'll have a softer landing if he does that again.

At this rate I might have to start thinking about a stair gate, although I think we're several months from that!!!

Saturday, 25 June 2011


Seth has been a right git today. He's obviously feeling poorly so spent most of the time in bed and then when we did get him up he just kicked off. I managed to get some dinner inside him but even then he complained. So I finally got him out of his chair and we had a cuddle which was lovely until he got wriggly again. So I tried him on the beanbag that I have just bought him (he has one at school and loves it). He sat rocking on it happily for a while and then gradually wriggled himself onto the floor. He stayed there for a while chuckling and kicking toys and then rolled over onto his side and stayed like that giggling. I was pretty gobsmacked, but then he lifted his head moved his arm and rolled onto his tummy. Just like that. No fuss, just left to his own devices he does something he's had physio on for the last 2 years! But not content with that he then completed the roll to be back on his back. All this after a day of being really fed up and grumpy! Well he wouldn't be my son if he was consistent, I suppose.

On Thursday I went on an AAC Network Day. I wasn't entirely sure what it was about or whether it would be worth the effort but it was one of the most useful thing I've attended. For those that don't know (and I didn't) AAC is Alternative and Augmented Communication and after listening to presentations from professionals and a parent I realised that there is so much I could be doing to help Seth communicate. Yes, he's making more word sounds and yes he's starting to sign but he's obviously really frustrated and I certainly am. I had started using these buttons (you record a word so it 'speaks' for you when pressed) but Community took them back when he started at school and I lost all impetus with it. The parent who presented has a 17 yr old who uses eye gaze technology, but explained that they didn't start there and it's a long journey which evolves with the child. She used the example of a child wanting to go swimming. Now, your child might be able to communicate 'yes' to a list of options you offer, but you might not have thought to offer swimming. Therefore, they can't tell you they want to go. Or they might be able to just tell you they want swimming but it might not be something you want to do so you don't do it. However, if the child could tell you that she wants to go swimming because her legs ached, you would make the effort to arrange it and that's true communication.

Apparently there is a loan library of AAC equipment at Greenfields School and Wren Spinney School and I also know of a national charity loaning switch adapted toys which you pay an annual subscription for; I looked into it ages ago but never did anything about it. I think I will now! In addition, there is a new group just started in Northamptonshire called Yakety Yak ( 'aiding communication in Northamptonshire'. It has a forum so you can ask questions and parents who've been through it can help and advise.

Monday, 20 June 2011

Fathers Day

I was utterly crap on Fathers Day. I ended up getting up at 5am to do an unplanned car boot sale and completely forgot to leave Craig the card 'Seth' had bought for him. I actually had to be reminded that it was Fathers Day and when I went to give Craig his card I discovered that I'd matched it up with the wrong sized envelope so it didn't even fit! I know I left Craig feeling utterly unappreciated so I am linking to another blog I discovered on Hopeful Parents called 'Dads are Awesome' where a mum properly talks about how fantastic her husband is. Craig, I'm sorry I'm so crap and I love you.

Friday, 17 June 2011

We had a meeting with Seth's consultant on Tuesday. To prepare I started to think about all the new things that Seth is doing and there is so much! They are all really little things but they are all stepping stones to speech and mobility. Seth talks so much and its sounding closer to words. Twice now he has said 'more' which traditionally has been used when feeding but he was actually asking for a drink. He has signed 'more' and 'cake' on a number of occasions too (you can tell he's my son, it's all about filling his tummy). The other morning we were having a cuddle (he properly cuddles in now; wrapping his arms round your neck and bringing his knees round) and he was showing no signs of wanting to stop. So I asked him 'do you want breakfast?' and he pushed himself away using his hands, looked me right in the eyes and laughed. Amazing!

The consultant noted all this down and gave his traditional spiel about fits and how dangerous they are and how good it is that Seth is still only having them so sporadically. I suppose it's no wonder that I have such a negative knee jerk reaction when Seth does have them. But really all that matters is that our house is filled with laughter and happiness, something that I couldn't even imagine not so long ago.

Craig and I had a weekend to ourselves last weekend, going to Download festival. It was so good to spend the time together; we completely chilled out although we did get rather wet on Sunday. In fact rather wet is an understatement - I wasn't too bad but Craig was completely soaked through and I can't believe he escaped without getting ill! Good though cos that would rather have spoiled the moment!

Sunday, 5 June 2011

Traumatic documentaries but lovely playgroups

I've been absent for a bit because I had an assignment to hand in at the end of May so spent all spare moments intensely working on that and then, once it was finished, needed a break from the old laptop!!!

My normally suppressed fears for Seth rose to the surface on Monday with the broadcast of the Panorama programme 'Undercover care - abuse exposed'. For anyone who doesn't know what I'm talking about you can view it here. I actually haven't been able to bring myself to watch it all - I saw the beginning on iplayer and turned it off. In fact I don't even want to talk about it anymore. So instead I'm going to talk about the Stay and Play I went to on Wednesday, with Seth.

For those of you who are local it was held at Wallace Road Nursery and the woman who organised it, Cindy, works there and when it's closed during the holidays she organises these events for parents, kids with additional needs and their siblings. I heard about it from a friend and ended up going on my own so was a bit nervous but they were all lovely. Seth had a fab time and was so happy all day. The kids were all quite a bit older than Seth and Cindy is hoping to set up a regular under 5's group. The details of the 1st one is on Facebook. Seth will be at school but I'm planning to go anyway cos it will still be good to see people and have a chat.

Thursday, 19 May 2011

Having a laugh

Seth was having such fun playing with his desk bells and drum that I had to
video it. He fills me with joy just watching him and that's something I didn't think I'd ever feel for such a long time. I mean I've always loved him but there wasn't any fun. Now there's lots of fun!!!

Tuesday, 17 May 2011


We went camping this weekend. We didn't go too far and we only stayed for one night. Craig and I used to camp infrequently before Seth was born and we haven't been since. & I really miss it. I love waking up and being instantly outdoors and seeing fields all around you. So we bought a huge tent and dipped our toe in. Seth loves being outside and spent the whole afternoon laughing, once we arrived at the campsite. He wasn't so keen on it once he went to bed though. I'd bought him a sleeping bag and he'd been sleeping in it the previous few nights and was quite happy but in this new environment he got quite freaked about by it. He wriggled around so much that he fell off his single airbed. So he got our double airbed, Craig slept on the single one and I slept on a couple of foam mats! It was quite a disturbed night but we've learnt some lessons from it and we're going to try again in a couple of weeks. The following morning, Seth was quite happy with his bed.

From Raising Seth

Thursday, 5 May 2011

Temple Grandin

I just finished watching the film Temple Grandin. It's a true story about a woman with autism and I found it really moving and uplifting. I obviously empathized with the mum. Its all about a person 'being different, not less' and what can be achieved with the right support and encouragement.

Tuesday, 3 May 2011

Seth woke up at 4.30 this morning screaming the house down and I still have no idea what was up with him! After carrying him round for a while and offering him a drink which was very adamantly refused I defaulted to the 'calpol and back to bed' routine. Eventually he did calm down and went back to sleep. The whole time I was conscious of the guy on the other side of the wall tutting away and got more and more annoyed at what he'd said and how uncomfortable I now felt. So I kept an eye out for the old man that lives a few doors down and wanders up and down the street. He doesn't speak very good english but he's very friendly and I've accosted him before when I've needed to speak to someone about issues with the mosque (usually the level of noise!!!). Anyway so I pounced on him and asked to talk to someone and he brought me his daughter. I explained what my neighbour had said and explained that whilst I was sure it was a language break down it was also quite rude and had left me feeling very uncomfortable. I also pointed out that we can hear his prayers at all hours of the night as clearly as he could hear anything from us. She was lovely and agreed that he probably hadn't meant it as it had come out and that she would have a word with him as it was unfair especially how much noise I put up with. So I'm feeling better again. Thing is, Seth is actually sleeping loads better since I went on that sleep seminar organised by Cerebra in Manchester. I put in practice some of their tips and on the whole he's a lot quieter at night.

Monday, 2 May 2011

Nosy neighbours

I was in the front garden this afternoon, weeding. That in itself is amazing. But I'm there and the man who lives in the mosque next door to us called to me across the wall. In his faltering English he told me that my baby cries a lot and I should be caring for him. Now, I took his blunt-ness to simply be a lack of the grasp of English and that he hadn't meant it to come across as that. He was smiling as he said it. & to be honest as I can clearly hear him singing his prayers from Seth's room I often wondered what he made of Seth's regular nightly screams. & now I know! I assured him that we didn't leave Seth crying and that often we couldn't soothe him. I also explained that Seth was 'disabled' and couldn't talk so can't say 'Mummy I'm hungry' or 'Mummy I had a bad dream' or 'Mummy I feel poorly' and so screams. At that my neighbour did start to back away from me. I'm not sure how much he understood and I don't really care. Half of me wanted to tell him to bugger off and that's it's none of his business and the other half was actually impressed that it bothered him enough to talk to me about it.

Friday, 29 April 2011

Not the royal wedding.

We went in for the EEG last week. It was the first time Seth had slept during the test in a while so they were really pleased. I'm still waiting to hear if we've learnt anything about his recent fits from it but its good to have it anyway. The woman conducting the test told us that next time Seth has a series of fits we should phone them directly so that they do it at the time, which is great to hear.

I've decided not to go back to the osteopath. I still think they did some good for Seth but even the new guy we were seeing, Pierre, started talking nonsense and it just pissed me off. Seth was very talkative when we first went in for the appointment and Pierre told me that Seth's jabbering meant that he Seth was telling him what he wanted Pierre to work on. I thought he was joking, but no he was serious. Now I love hearing Seth 'talking' but I rarely hear anything that I can actually understand! Then when I questioned if we were seeing any real improvement in Seth's development that could directly be linked to the sessions Pierre told me that I need to look with heart and not my mind and that he could see by Seth's energy the improvements. During the session Pierre also started telling me about his work with horses and when I raised my eyebrows he said 'well horses are very sensitive creatures you know' and at that I actually laughed out loud. I couldn't help myself! I've heard of people doing reiki on horses and I really don't know horses enough to know how sensitive they are but it sounded like they were the ones giving the sessions to him which now I realise probably wasn't what he was saying. Oh well!

Tuesday, 19 April 2011

Sunny days!

We dusted off Seth's trike today for the first time since winter and took it for a spin around Willens Lake in Milton Keynes. With the larger boot I can fit it into the new car. Of course the idea is to use it instead of the car but I'm not going out onto the road without a practice session first. Seth still thinks its fab and shrieked and giggled a lot (in fact as I'm sitting in the garden typing I can hear him in his bed still shrieking and laughing, I think he's had a good day :)). I've heard of something called 'muscle memory' but my bottom definitely had forgotten what it was like to be on a bike seat!

We did some 4-point kneeling this afternoon, and Seth is definitely starting to get the idea of holding weight on his arms- and when he was on his tummy he was bringing his knees up so his bottom half moves in the right direction. I really think that he's gonna get there eventually, that one day - it could take another year, but one day - he'll hold himself up with his hands.I think the main thing is that he's enjoying trying and he's really exploring what he can/can't do, like doing squats when he's standing and leaning further and further back when he's sitting so he can pull himself upright without falling over.

Sunday, 10 April 2011

The car has arrived!!!

Wow, thanks for the virtual hugs and hoki sayings. Very appreciated :)

Anyway to misquote Winnie the Pooh: how can anyone be uncheered with sunny weather like this?
We're off for the Easter Holidays but managed to get Seth into holiday club for 2 days at his school so Craig and I will have some time to ourselves next week. Which will be nice! Some of that time will be spent doing DIY but hey ho, that will be good in its own way.

The great news is that the CAR HAS ARRIVED!!!!! A little later than the 1st week of March that I was originally told but that always happens doesn't it? Anyway, it is SWEET and very yummy. I love its DAB radio (tuning in 6 music was the very first thing I did) and the blue tooth technology - it's even got voice commands for goodness sake!!! Plus I can fit all of Seth's stuff in the boot, yeah.

Tuesday, 5 April 2011

Deep, dark holes

I've been in a deep, dark hole. Seth has been fine. He hasn't shown any further signs of fitting and we've got an eeg scheduled in a couple of weeks so we'll know a little more then. I also went to my sleep seminar up in Manchester which was interesting; I learnt a bit about the sleep cycle, why it's important to keep the bedroom dark and a good pre-sleep routine and that it would be a good idea for us to keep a sleep diary for Seth that we can show the epilepsy nurse when she contacts us. I also went to Nottingham for a day's course on deep tissue massage which was just brilliant.

& yet I found myself in the bleakest of mindsets for the last several days which thankfully I seemed to have crawled out of, at least for now. I just feel like an absolute failure - at work, at motherhood, at life in general! & if that sounds completely self pitying - it is!

Saturday, 26 March 2011


I just discovered that today is epilepsy awareness day. Go to Derby Daves blog to find out more.

We spent most of yesterday at the hospital; Seth spent the day fitting. He had a seizure the previous 2 Sundays but they were different to the ones he had experienced previously and I only noticed them because they began with a shout. There was no flailing around, he simply pursed his lips as if sucking on something sour, then pulled his mouth into a sneer. It only lasted a minute or so and although was unresponsive he isn't always that responsive so I was never actually sure if it was a seizure, except that he immediately zonked out and slept for a couple of hours. Then during his tea Thursday he did it again and I was convinced. He's shown no sign of illness and has been sleeping consistently better than, well, ever so I figured it was just a reaction to so much going on. But then over breakfast he did it again. He didn't fall asleep so took him to school anyway. However, Seth had another seizure, fell asleep and when he woke up he immediately had another seizure and then went back to sleep. The school nurse checked him out and said that he was okay but that we should go to hospital.

Seth didn't go back to sleep but spent the afternoon in a state of drowsiness, every so often having another fit. Because they weren't causing him any real problem and he wasn't showing any other signs of ill health they let us go home and ever since then I've been in a state of anxiety. Miraculously they tailed off and Seth slept really well. Today I think he has had some buzzing in his head because he's given a strange moan once or twice but nobody else would have even noticed anything. His colouring is still off - flushed cheeks but pale underneath with dark smudges under his eyes. He's been like that since he got the hospital yesterday.

I think it might be time to start the anticonvulsants. I'm told the dose would be the very lowest possible and that we'd work up to it slowly - I'm desperate that he doesn't end up sedated. But I can't bear that he might have buzzing going on his head (I say buzzing because I really don't know what's going on in there) and if he's going to be drowsy from fits then what's the dif?! I just don't know how we got here. One minute he's completely fit free and 2 weeks later drugs seem the only option.

Thursday, 17 March 2011

Osteopathy and cerebral palsy

I'm feeling better. Still tired but more positive about everything again. Plus I had a massage this morning which has really helped my aches and pains which unsurprisingly has helped everything else (she is excellent by the way). I've also had a great afternoon with Seth. Recently he's been so tired after school that he's pretty unresponsive but today he's enjoyed helping with feeding, drinking and even just waved good night to me. Earlier he grabbed a toy as well. So I really am a happy chicken at the moment.

I follow Cerebra on Twitter. Yesterday they sent out a tweet about a study they conducted on the effectiveness of osteopathic treatment on children with cerebral palsy. I was interested because I take Seth to an osteopath. I've got mixed opinions. I've taken Seth since he was about 4 months old when he was very unhappy all the time and this therapist, Christophe, was recommended. He told me that because of Seth's birth and the trauma to his head that as his head grew the bones weren't growing properly and it was causing pressure and headaches. Apparently, the treatments settled the bones into place and allowed his head to grow properly without pain. This seems fine with me and Seth enjoyed the treatments and his wellbeing improved. However, Christophe really is an arrogant son of a bitch and actually told me the first time he treated Seth that he didn't believe that Seth had brain damage. This has become patently untrue and Christophe has never apologised for his words. The hospital think he's a quack because of other things he's said to other parents (eg arguing with a physio that a child doesn't have cerebral palsy). Anyway I stopped seeing him and am now seeing someone else from that clinic, Pierre. Seth really responds to these treatments - they seem to be working very lightly on him but he's so aware of what is happening to him and seems to feel it profoundly. Then he usually sleeps for hours afterwards. Interestingly, the results of Cerebra's trial found that osteopathy had no beneficial effect on children with cerebral palsy; the researchers found no statistically significant difference in terms of a child’s movement (which was assessed by physiotherapists who did not know if the child had received osteopathic treatment or not), the child’s quality of life, the child’s sleeping patterns and the child’s level of pain. There was also no difference in the quality of life score for the parents and carers in either group. The trial was only over 6 months and I do think that is too short for a trial as I would have thought that benefits would occur over a longer period of time but osteopaths were consulted and they agreed the trial was good. Anyway while Seth seems to be benefiting I shall keep taking him but I thought this was useful to share. I wonder what experiences other people have had taking their kids to osteopaths. Anyone wanna share?

Tuesday, 15 March 2011

I haven't got time to be tired!

I'm so tired.
And I've come to realise that I'm always tired I've just been ignoring it. It struck me couple weeks back. It was my birthday (did I say that I turned 40 on the 3rd March?) and Craig and I had a day out. My parents picked Seth up from school and kept him overnight so we had all day and night. All we did was jump on the train to Milton Keynes, mooch around and go to the cinema but it felt like a complete holiday from my life. I felt free. We then travelled back to Northampton and met up with friends in the pub. It was a perfect day.
But every since then I've realised how tired I feel normally. I think going to the gym regularly has saved me because it makes me feel so good and energised afterwards but I'm definitely craving sugar more. So much so that I actually took fruit into work yesterday to try to get some healthy sugar in me and I was actually still feeling hungry whilst eating some strawberries! I'm not a fan of fruit! I'm certainly doing a lot more - I'm actually regularly tidying the house and studying, plus planning to start doing massages again which on the face of it might seem a daft thing to do. But I was tired before when all I did was sit on the sofa watching telly at every opportunity and then I just felt shit because all I did was sit on the sofa. Now I might be tired but also feel that I'm accomplishing some stuff. And it isn't any of that stuff that makes me tired - caring for Seth makes me tired. The rest is me trying to find stuff that makes me feel good. The most stupid thing that I do is try to get more responsibility at work. I should just keep my head down and just take the money. But I can't bear the thought that people don't think I'm up to it. But maybe I'm not! Maybe I really don't have enough left in me to take on any more and should be happy that I've got a job that I mostly enjoy and with people that I love working with.
But its not just about being tired. It's the emotional down that comes with it. Caring for Seth, even when he is at his loveliest, is still a drain. I think he might be having little fits again- little brain spasms which have only the subtlest of physical 'tell'. & the last 2 Sundays he's definitely had some kind of fit, again really small signs but the way he has zonked out afterwards confirm my suspicion. I know I should tell his consultant but all we'll do is have another eeg which will either show something happening at that particular moment, or not. He'll talk at me for a while and then we'll carry on as we were.

Wednesday, 9 March 2011

Sponsored Travel

Seth took part in a sponsored travel at school on Tuesday. He did it in his walker; walked a few steps and then fell asleep! He managed to raise over £200 for new equipment at his school's sensory room and officially walked 14 metres although by the look of the pictures he took a lot of cajoling cos he looks half asleep! I'm going to try to scan them in so can upload them here because they are priceless :)

When I was collecting the sponsorship money today at work I got talking to a colleague and discovered that he has a son with learning difficulties and autism. His son is in his early 20's and they are trying sort out where he can live so that he can be as independent as possible (albeit with 24 hour care). I got a bit glum at this because everything Mike was telling me is going to be my problem one day. I try not to think about it and focus on the daily struggles to ensure that when the time comes Seth is as independent as possible but it's still there...........ho hum.

I've decided to give my massage business a go. I am a qualified massage therapist but haven't practiced professionally since Seth was born. I've been wrestling with whether to sell all my equipment and give it all up but now feel that I've got some time and energy to give it another go. I loved doing it and am going to meet with my hairdresser tomorrow about renting her back room. I've been thinking about touch therapy for kids - I know how much Seth enjoys it when I massage him. I need to do some research......

Saturday, 19 February 2011

end of term 1

So anyway it was the last day of school and I had just finished giving Seth his breakfast. & he completely kicked off. He was in a complete rage and I didn't know why. I fought him into his coat and carried him rigid into the car. & then I put his school bag on his lap. His bag is his 'object of reference' for school and so every morning after he's strapped into his car seat I hold the bag on his lap and tell him 'here's your school bag because you're going to school'. I wait for him to look at it before I can carry on. So yesterday, despite his screams, I doggedly held his school bag on his lap and said the magic words. & he stopped shouting. Instantly. It was completely amazing. I was worried that the thrill of school had dimmed and he didn't want to go. But obviously not! I think he was simply tired (it's good we've got a week to rest a little) but despite this he still clearly was happy to be going.

Anyway this morning Seth was very happy playing on daddy. It was so cool I video'd it. It's rubbish quality cos its from my mobile but it's still fab. Plus it's on it's side and I can't work out how to rotate it so you might get a cricked neck watching it!!!
Later that afternoon we were driving and we had Metallica cd playing. Seth was properly moshing in his car seat and we video'd that too!. Enjoy.

Thursday, 10 February 2011

I'm still here

Seth is all good and we're all good but I got kind of sick of hearing my own voice so I'm taking a break until I've got something really interesting to say!

Tuesday, 25 January 2011

Hopeful Parents - The Anatomy of Swinging

This is a post from a blog that I follow and I just find it really uplifting. It shows how tenacity pays off.
Hopeful Parents - The Anatomy of Swinging

Friday, 21 January 2011

A bit of comfort eating

The car is ordered! I should get it 1st week of March and I'm very excited. It'll look like this:
From Raising Seth
You can't tell from this picture but it's huge - I'm a little daunted by it but when I did the test drive it was so easy to drive and it's got rear parking sensors so hopefully I'll be able to park it!!!

We now have a tray for Seth's wheelchair.
From Raising Seth
It'll make a big difference when we're out and about because I will be able to put sensory stuff on it and put meals on it. It had to be adjusted though because when the engineer tried to attach the tray we discovered that the company had measured it up wrong so didn't fit. So he had to drill more holes and move the screws. Plus the screws hadn't been recessed so stick out and are quite sharp so Seth could easily catch his finger on one. So this is just a temporary measure and another, properly made tray has been ordered (good grief!)

Yesterday I had another fit of baking and attempted a victoria sponge.
From Raising Seth
Yes it really is that flat - it didn't rise AT ALL. I still stuck jam in it and then preceded to work my way through it. Seth's only been at school 2 weeks but it feels longer and what with his poor sleeping pattern it really caught up with me yesterday. I'm not someone who is good with routine and the knowledge of the daily routine that is ahead of me started to depress me. When we decided to start a family I knew that kids did incur some routine but with Seth I am rigorous in repeating the getting up routine, the getting dressed routine, signing and using objects of reference etc etc. My skin used to literally crawl as I patiently fed Seth and tried to help him feed himself. I wanted to leap up and scream. Instead I have doggedly added more and more repetition as I've seen Seth respond to it. And I've gotten used to moving at Seth's pace and these routines are my way of expressing my love for Seth - giving him the best opportunity I can to pick up skills for eventual independence. But yesterday it just got to me a little. Plus what has been sustaining me is the plan to go to America this year on holiday. But after looking at the cost of flights I can't see it happening this year. Also, the realisation that now that Seth is at school (rather than private nursery) all of my annual leave from work will have to be used to cover the school holidays. So whereas before I could take off a day when Seth was at nursery and take some time for me (or sometimes Craig and I would take off a day together) that's not going to be possible anymore. That's hard to get my head around! I know that all parents must feel like this but that doesn't mean I have to like it! BUT THEN

I went to my new gym on the way home from work this evening. I did a 30 minute run (interspersed with walking!!) then (and I don't mean to rub this in readers) chilled out in the jacuzzi and sauna. & you know I'm feeling much better about everything!! I can take time out for myself and at least my money is going to some lovely things :)

Tuesday, 18 January 2011

sleep deprivation is back

Yesterday we had a consultation with Footsteps. They are in South Oxfordshire and offer 3 weeks intensive physio - two hours a day. One hour is standard mat work and then an hour is in 'the spider'.
From Raising Seth
The spider is basically bungee cords attached to a frame allowing the child to stand and move in a way they haven't been able to do before.
It did look very cool and I can understand that 3 weeks of intensive physio would have a very positive effect and it is very popular - all the sessions this year are fully booked with waiting lists. But we're not going to go ahead. Too damn expensive for one, although there are lots of reasons. I'm really glad we looked into it though.
I don't know if he got overexcited (he was was very excited!!) but when we went to bed last night past midnight, Seth was still very awake and talking away. He then woke up screaming at 2.30, then at 3.30 and then again at 6.30. He still only fell asleep for about 30 minutes this morning at school and didn't sleep at all this afternoon. He's like one of those Duracell bunnies - he just goes on and on. He's obviously so mentally stimulated which is fantastic but I think we will pay for that at night! I'm going to a seminar run by Cerebra - Understanding Sleep and Resolving Related Problems in Children with Disabilities - so I'm hoping to learn something useful!!

Sunday, 16 January 2011

Peek a boo!

Yesterday morning Craig was feeding Seth his breakfast when Seth dropped his head down and became very still and silent. Craig obviously reacted with concern but after a few moments Seth lifted up his head grinning at his daddy. Then he dropped his head down again. He did this a few times and we think he was playing 'peek a boo' with Craig. He's done something similar in the past when being held; he'd bury his head in your shoulder and then lift his face up again - obviously we always played along and I think the game has been extended. Craig told me that the other night when he was putting Seth to bed and reading him a story Seth suddenly buried his head in the duvet and then looked back round at Craig, repeating it a few times. It's completely amazing to see Seth initiating play like this and I love watching the two of them together. Now that Seth is more responsive there is a relaxed, playful air about them.
From Raising Seth

Tuesday, 11 January 2011

Overzealous grandparents and shiny new cars

On Monday, Seth was collected from school by my parents. When Craig picked him up later he was informed that Seth had poo'd in a potty. That is pretty amazing as this is the first time he has used a potty. Apparently its really supportive with a high back and arm rests (a bit like a throne my mum described it as!) and as they noticed he was making the motions, as it were, they quickly sat him on it. & hey presto. All good. Except that they photo'd the poo in the potty and showed the photo to Craig. My parents are completely tapped but you can't fault them for proud grandparentsness. Craig suggested to me that I should post the photo and make a 'log blog'.

This morning between dropping Seth off at school and picking him up 4 and half hours later I've been rushing round to 3 different car dealers test driving cars. We were awarded the higher level disability living allowance 'for getting around' just before Christmas and since then I have been excitably trying out different cars under the Motability scheme. Today was supposed to be decision making day because it's still going to be up to 2 months before we'll get it and its very hard fitting in all of Seth's equipment in my car every day, especially as I'm insisting on him using his walker to get to and from class. I think I've decided on the Ford Grand C-Max (the Toyota Verso coming in a close 2nd) but typically the dealer I visited today didn't have the right model so I've got to go back Thursday to actually see it and make my final decision.

Sunday, 9 January 2011

What a fantastic weekend!

This weekend has been just fab. We've all been pretty relaxed and enjoyed spending time and playing with Seth. Because I know he's been working hard during the week the pressure is off to have to make sure that I tick all of the physio and cognitive excercises. Although of course everything we do is educational play in some way, it didn't feel like work. The new gym we joined at the beginning of the year allows children into the swimming pool for a few hours so Craig and I took Seth this afternoon. It was actually one of the reasons we joined. It was great for Craig because he hasn't had a chance to swim with Seth before and Seth really enjoyed it even though it was pretty busy and not as warm as he was used to at school. There's definitely a change in Seth. He wakes up more alert and chatty and he's looking around even more, especially behind him. He seems to now be aware that there is a 'behind him' and is curious about it. I can't wait to see what next week brings.

Saturday night we went to a friends 30th birthday party. It was fancy dress. Craig and I went as Chewbacca and Scooby doo. We hadn't planned this but as soon as we saw the costumes the decision was made!
From Raising Seth

Saturday, 8 January 2011

1st week over

Well that was Seth's first week at school. he loved every morning (apparently he got very excited each morning when the children had their 'hello' circle and was obviously so happy to be there)and slept most of every afternoon! He had a lie in this morning but he still fell asleep in his chair once he had finished his lunch and he's now back in bed!!! I hope he doesn't sleep for too long because we do actually want to go out this afternoon!

I started my domestic goddess attempt this week as well. I cooked lasagna and soup and veg pasties and baked cup cakes, fairy cakes and madeira cake. I'm particularly proud of the veg pasties :) I also had a complete disaster. I attempted to make chocolate steamed pudding but because my bowl was too big for my saucepan it steamed all afternoon but the middle was still squidgy. I'm renowned for boiling saucepans dry and ruining them so I was very watchful and kept topping the water up. But by Seth's tea time I decided to turn up the heat and give it just another half hour - I was pretty sure it would still taste fab, squidgy or not. In that half hour it managed to boil dry and melt the bowl into the pudding and saucepan, ruining all three. I was so absorbed feeding Seth and watching a review of Toy Story 3 (it looks really good!) on the telly that I somehow never noticed the acrid smoke filling the kitchen. I was gutted. What a waste of effort and money! Plus I was really looking forward to eating it! This meant no pudding for Seth but luckily he fell asleep (again) so didn't miss it.

Wednesday, 5 January 2011

First day of school

So it was Seth's first day at pre-school today. Although he eats lunch there I have to provide the food, even snacks. So I've been baking.
From Raising Seth
And Seth went to school with his new school bag and lunch box
From Raising Seth
After a week of lie-ins it was a bit of shock for him to be woken up at 7.45 and out of the house by 8.30. I virtually force fed him his breakfast! Despite this he loved his first morning at school. I was fine taking him in until one of the teachers asked how I was. Then I was suddenly tearful; today has been a long time coming! I was worried how Seth would cope and half expected him to just sleep the morning away. But instead he didn't sleep at all and apparently really enjoyed himself. Oh, the relief knowing that he's actually being taught stuff and I can stop worrying about it. Today's timetable was maths and science. The maths involved getting Seth to hold a ball and count to 3 and then letting it go again. The science involved feel-y tactile play and making the first page of a book 'that's not my bear'. I'm so happy!

While Seth was at school I went to the gym Craig and I joined at the weekend. I had a health MOT-apparently I'm pretty fit(!) but my cholesterol is high and my hip to waist ratio is really bad (no surprises there!) then I went for a swim, jacuzzi and sauna. Ah bliss! I actually felt relaxed for a whole couple of minutes. Then I picked up Seth and he slept for most of the afternoon. I really hope he sleeps tonight, too!

Monday, 3 January 2011


I've just woken up from the strangest, loveliest dream. I don't know if it will make any sense but I'm going to try to retell it. Seth and I were at Fairfields School at the Conductive Education class. The class had become the stage of an auditorium and as we were doing the class I realised that people were silently coming in and sitting down. Some were strangers but some were my friends I remember seeing Lucy and Niall, Colette, Sarah C and Matt. I knew that they were there to watch and support Seth. For some reason the teacher had to leave the classroom and myself and the 2 other parents sat and waited for the class to continue. The teacher didn't return so I started to say to the other parents (who had now become 2 men who I didn't know) that perhaps we should just carry on ourselves when they laid down and started sort of caterpillar crawling sideways and their children copied them. A couple of people applauded and I just went back to Seth who was lying on his tummy, feeling bad because they just did it without talking to me, knowing that Seth can't do that. Seth's arm was lying awkwardly at his side so I moved it and he suddenly moved his hips and then head to inch along sideways. It was only a small move but he did it twice and was obviously attempting to copy the other children. All my friends in the audience saw it too and I woke up smiling.
See, weird but lovely. :)

For New Years Eve we finally made up our minds and went to our friends, Rachel and Paul, who had invited a couple of people over. It was a very chilled out night with good music, conversation and booze. We didn't leave til 2 and then only because I didn't want to feel too crap and knackered later. It was a shame because Craig would have preferred to stay-one of the few times he has totally relaxed and enjoyed himself since Seth was born. So, the argument we had once we were home aside (!), it was a great start to 2011.