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!!!

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!

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.

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 needs...so 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

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

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!

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!!!