Friday, 29 October 2010

Light switches and youth clubs

A little while ago I asked for advice on fitting a light switch that Seth could activate with his foot whilst in bed. I was given some really helpful ideas but after talking to my electrical friend I plumped for a rocker switch. We fitted it horizontally and that first night Seth switched his light on. It's been fitted a week and every night he runs his foot across it turning his light on and off. I'm certain he knows what he's doing and he giggles away to himself. It's fab.

We met our new Early Support Coordinator on Thursday (although they've got new titles now but I can't remember what that is). I got off my chest my annoyance about the letter she sent and then we moved on. She left us with various leaflets full of information and this morning I found myself reading about youth groups and older kids activities. & I started to get excited about the kind of boy Seth will become and the kinds of activities he might be interested in. It's still tempered with fear and worry but I'm actually anticipating the future for the first time. I've always believed that the future is an open book for him and refused to allow the medical professionals doom and gloom to prejudge him. I know they are all waiting for him to start fitting again and my SENCO actually said that we should make the most of these good times and I think I've let those ideas overshadow everything recently. I am going to allow myself to feel positive about the future and enjoy him for who he is now.

Sunday, 24 October 2010

Daddy time

I went away for the weekend with a friend. I downloaded a 6 mile circular walk off the Cotswold Way and booked us in to a b 'n b for the night (I reckon I'm really going to ache tomorrow!) So Seth and Craig have had some quality time together. Apparently Seth has pretty much laughed the whole time and Craig has enjoyed it too; he's certainly a helluvalot saner than I am when I've had Seth alone for the weekend so kudos to him.

Friday, 22 October 2010

Letting off some steam

I'm shattered. The first night in about 2 weeks that Seth has slept through and I'm up most of the night with a poorly tummy. That's irony for you! & after having been off last week with flu-cum-virusy thing I didn't feel in a strong position to phone in sick again. So I soldiered on in a martyr like fashion. But now I'm in my pyjamas with a bowl of Ben and Jerrys so all is right with the world.

Despite my tiredness I'm definitely feeling a lot more chipper. With getting signed off last week I really do think there is a note on my file that says 'give this woman a break any time you get the opportunity' because my friends tell me they never get signed off that easily. I've had a great time with Seth this week; we've made it to all the classes, picked up new shoes and tried out some seat potties (it looked a bit like a commode!).

My car is fixed and back home, Craig spoke to the Early Support Coordinator and told her that she should review the way she writes to parents and we're meeting her next week, I've spoken to my SENCO and had a moan about the nursery AND my parents have totally saved the day by offering to take Seth after school when he starts his preschool year in January, 3 days a week so I can carry on working. That is such a massive relief - the options were he carries on at his current nursery (the same nursery that I'm having to micro manage to get the simplist of things sorted) in the afternoons or he went to a childminder. & then Craig would have had to use his lunchbreak to transport Seth from one to the other which he was getting really stressed about. But my parents will pick Seth up so no problem. AND I'll save on childcare. I've even got an update on the wheelchair- apparently the wrong size had been ordered so it came into stores and then went straight out again. I'm told it should be just a couple of weeks now.....

This blog is a real stress buster for me. I can say whatever's on my mind and I always feel a weight lift from my shoulders. I've noticed that we all apologise for having a moan. I'm acutely aware that there are plenty of other parents in the same boat as me going through the same pain and that some kids have a lot more difficulties than Seth does. & another mum I know is having a tough week and she was telling me about it. But she kept apologising for moaning because her 2 boys have fewer difficulties than Seth. But she has a total valid reason for being stressed and worn out and if we can't be there for each other to support each other when we feel down then what good are we? We're all trying to remain so positive for our children that we find it hard to admit when we're not feeling all that positive. Perhaps we're worried that if we let a chink get in our armour then our defences will crumble. But in here you can let it all out and I want you to feel free, if you want, to add a comment to any of my posts letting off steam about whatever is stressing you out.

Sunday, 17 October 2010

Feeling blue

Have you ever had that discussion about what you would do if your partner got into a terrible accident and became hospital bound or became totally dependent on you for his care? Maybe it's just me but when I watched a film where that happened it made me think; would you stick with them? Even though your relationship with them would have irrevocably changed? What if it's not your partner but your child?
He will be 3 in just over a month and my child should be running around, testing his boundaries, talking, exploring. Instead he would rather bounce on his feet than walk, rock back and forth rather than play with anything in front on him, and I still can't get him to drink from anything but a teat-ed bottle. I suppose I'm just feeling blue because I'm getting over my flu-thingy. Seth is remarkably different to the child he was a year ago but today I can't help focusing on the stuff that hasn't changed and worrying about his future and about our future.

Friday, 8 October 2010

So I recognise that I'm stressed and 2 days later I'm sick. That's depressingly efficient.

Wednesday, 6 October 2010


I'm feeling pretty overwhelmed this week. I've been getting on really well at work these last past months and now I'm struggling with concentration and managing the increasing workload. Last year when this happened I went off with stress for 2 weeks and then reduced my hours - now I recognise the symptoms so hopefully I can try to head this off! Work is very busy and demanding; I feel my brain is so full of Seth-stuff that there is no room to cope with a demanding job as well. But it's having that job that keeps me sane normally so it's not simply a matter of quitting.

Seth starting pre-school in January is weighing heavily; the change in his hours means I have to change my hours and I'm waiting for my employers response to my request. I can't set anything else in motion til I know. It turns out that we don't get transport because we live .1 of a mile too close to the school. This adds an extra layer of complication; I can write and ask for a review though.

I left a message with our Early Support coordinator on Monday about that stinky letter she wrote. She hasn't phoned back.

I got a hire car yesterday arranged by the insurance car. I specifically told them it had to be large enough to fit a wheelchair buggy and a child seat in - they turned up in a 3 door, small booted car. So I sent them wasn't a good morning - Seth had tummy ache again (constipated again despite the new meds) and missed his morning nap due to waiting for car. I still managed to get to swimming on time but he promptly fell asleep and slept through the class. Then refused lunch - his face was burning red, I just wish his teeth would finish coming through!!! So we gave up on Conductive class and came home.

Sunday, 3 October 2010

Just a bit busy

So tomorrow I've got to phone:
- the garage about coming to pick up my car because someone backed into it on Friday when I picking Seth up from nursery;
- the OT to come out to the nursery to fix his chair, because I simply can't rely on them to do it;
- Seth's consultant because we're supposed to be seeing him this month and still haven't been given an appointment;
- the OT wheelchair service because it's now been 3 months since it was ordered and I still haven't heard anything;
- our early support coordinator because I got a snotty letter from her - can you believe this; she's phoned a couple of times and left messages to introduce herself and to try to make an appointment to see us. I want to see her but being a bit busy I haven't yet gotten around to calling her back to set something up. So she writes a letter saying that if she doesn't hear from me in the couple of weeks she she's going to 'close our case'. What so if I don't need her right now I'm not allowed to need her every again?! So she's going to hear from me all right!!
- phone the LEA to find out why we are not eligible for transport;
- phone to change the shoe appointment they've given me because it clashes with an appointment we've already got

Somewhere in this I've actually got to go to work!

Saturday, 2 October 2010

Sometimes I just despair

The nursery washed Seth's chair over the summer and couldn't put it back together again. So they started feeding him in a normal chair with the other children - I'm not sure how they managed it as one teacher would have to have been sitting behind him supporting him. They then reported that he wasn't eating as much. I pointed out that he wouldn't eat as much as he would be struggling to keep himself upright and would get tired quickly. His sitting is improving but that's really expecting too much! They still haven't called OT to fix the chair and have been using a pushchair to feed him in instead. Thing is they should be using his chair to do sensory play with him which means they can't have been doing this either.

In addition, the physio went on Friday. Apparently they knew nothing about the appointment so were not expecting her. How could she not have booked it in with them?! She then asked them to give her a copy of the excercise routine that she wrote. A colleague of hers had added illustrations to the routine and sent it to me and I had duly circulated it. But the colleague hadn't given her a copy of it - they work in the same place and yet can't even provide copies for each other. So the nursery were asking me for permission to give her a copy of a piece of paper that she should have already had.

And our preschool teacher actually told me that I shouldn't get involved with the nursery setting and should leave it to her. Yeah right-she had no idea that Seth's key worker barely saw Seth now as she had other responsibilities and she knew nothing about them using a pushchair to feed him. If I don't keep on top of everything things simply don't happen. It's not in my nature to sit back and leave things to others but it would be nice if I didn't have to micro-manage every bleedin' thing.

Saying hello

Seth's 'hellos' are definitely coming on. He acknowledges me more when I pick him up from nursery (he goes twice a week) and they tell me they walk around the room with him saying 'hello' to the other children. I can already see a difference in his awareness, as well as his walking.
During the night when I changed his nappy he actually stopped crying when I came into the room and then talked to me the whole time. It was fab, actually made me not mind to be woken at 3.30! His vocabulary relies heavily on vowels and a few back of the throat consonants but he's been making sounds beginning with 'm' for some time now and it really felt like he was saying 'mummy'. He's actually looking at me when he's making the sound for a start. It's quite amazing how versatile a sound beginning with 'm' can be - he's been saying 'more' when I'm feeding him for a year now and I'm certain that in the evening he's asking for milk. There's another sound that always goes along with it, plus sometimes he even signs 'milk' as well or brings his hands together as if holding a bottle. You don't realise how much he is communicating until you stand back and reflect on it!

Took Seth to Rugrats & Halfpints again on Thursday. Seth actually lifted up his right hand and gazed at it. I've never seen him do that whilst sitting up before. He actually did it 3 times; he'd look away and bring his hand down and then bring it back up and look again. Then I took him to his favourite spot; an alcove which is all black with mirrors and tiny lights dotted all over the walls. He just giggled and giggled. We actually had 2 other kids come over to see what all the fun was and he enjoyed sharing the space too. Unsurprisingly I have now booked his birthday party there!