Thursday, 30 December 2010

Here's to 2011

It's 9am and Seth is still asleep. See what I mean? And he only woke up once in the night! It means I can be doing this so maybe I'm less frustrated that he's not awake and more feeling guilty that I'm enjoying having the time for myself. Maybe it's a bit of both!

So it's nearly the end of the year. I normally hate New Years Eve and prefer to stay home under a quilt and definitely be asleep before midnight. However, a few weeks ago I went a bit doolally and asked my parents to have Seth for the night so that Craig and I could go out and PARTY. They agreed being the amazingly lovely people that they are and since then Craig and I have been trying to work out what to DO! I haven't had a good dance since our wedding last year but the club we used to go to back in the day has closed. We thought about going up to Nottingham to Rock City and getting a cheap hotel but that is a pretty expensive way to go and would we rather do that on our own rather than be sociable with friends? Then we decided that actually just being at home playing on the xbox with no distractions from Seth would be bliss. But is that making the most of Seth being at his grandparents?! So much for going out and PARTYING! We tried just going out into town one New Year probably just before Seth was born and it was just awful so we definitely don't want to do that! Ho hum. All of this indecision is because I want to shake off the shackles of 2010 and start afresh for 2011. Each year since Seth was born has been progressively less crap but this year, for me, has been dominated by tiredness, lack of motivation beyond Seth's stuff and eating crap (and getting fatter). We've got tickets for Download Festival next year and I'm so excited and I think that sets the tone for next year. Plus with Seth going to school I'm going to have a couple mornings free to be a domestic goddess (bets on how long that will last?!!!!). The other thing is that we've been trying to have another baby for the last 2 years and I honestly believe it's not going to happen. My body just isn't into the idea and I really can't blame it. So I want to get on with next year without second guessing every decision with 'unless I'm pregnant'.

I want to find joy in the life that I have, take control of things I can and let got of the things I can't.

This blog has meant a lot to me this year so thanks for reading it and thanks for all the comments, I have appreciated every single one. Especially thanks to Lyndylou, DerbyDave and Eric whose own blogs and blogs they have suggested have been a source of inspiration and support.

Wow I really am taking this New Year thing seriously aren't I?! Anyway I'm off to Candlelight Pilates tonight with a couple of friends which sounds very cool.

Wednesday, 29 December 2010

Lots more firsts!

Seth's sight test went really well. He looked and tracked everything they moved in front of him. He didn't show any interest in the previous tests. They then put the drops in and checked the back of his eyes and physically everything is still the same. The doc (although he's a Mr not a Dr but I don't know what else to call him) said that Seth's eyes are obviously improving and that considering how in all the other areas his development is behind then we shouldn't expect his sight to be any different, and we should just hope for the best. That seems to be our family motto! I think the drops affected his eyes though because Seth had blood shot and gloopy eyes for a few days afterwards. I was worried it was conjunctivitis but it's clearing up on its own so can't be that.

And for another first, Seth stuck his hand in his bowl during breakfast the other day; weetabix and banana - doesn't it look yummy?
From Raising Seth

From Raising Seth

He spent the whole meal squidging his hands in it. Gross but great at the same time.

Then he spent some time playing with Daddy
From Raising Seth

Christmas isn't going too badly. Seth has been full of cold and quite sleepy. I was looking forward to having this time to play with him and I get so frustrated because he always seems to get poorly when we're on holiday. All the other time I seem to be taking him/picking him up from places; classes, nursery, shopping etc and then fitting in physio time or sensory time. But when we're on holiday we can relax and take our time and try to make it play time rather than work. But Seth seems to realise he's on holiday too and would obviously prefer to lounge around in bed a bit more. I can't honestly blame him and just need to try to relax and go at his pace-easier said than done, though!

Monday, 20 December 2010

My naughty, cheeky, clever boy

When Seth eats you can get him to lift his head to take food from the spoon but then he tends to let his head flop forward again while he chews. And then because he often keeps his mouth open the food can fall out into his bib. I've wondered if it's because he's concentrating so much on eating that it's too much to keep his head up as well. & that might be part of it BUT sometimes he will let the food fall out, look up at you and giggle like he knows he's being naughty and it's a game. Anyway the other day he was taking the food, dropping his head, letting the food fall out while he 'chewed' and then lifting his head just enough for me to shovel more in. So I refused to feed him any more until he looked at me. & he simply wouldn't do it. His 'more' became more and more coherent and insistent and he brought his hand to his mouth to sign 'eat' but he would not lift his eyes to look at me. So in the end I got up with his bowl and took it back to the kitchen and when I looked back he was looking right at me! Little bugger!

Since then I've noticed his eyes following me when I walk past him. He's been doing it more and more and it does actually make me jump when I turn to look at him to find him looking back at me. I'm just not used to it! & a couple of times when I've leant in for a kiss Craig has noticed his hand reaching out towards me as I moved away. To top it off, last night, Seth was sitting on the floor and he was having great fun rocking further back and righting himself before he fell. That in itself was very cool but I knelt down beside him to talk to him and he turned his head towards me and then brought his hand up to my face. I turned to Craig to say 'oh my god did you see that?!' and when I turned back to Seth he did it again.

Anyway it's the annual eye test on Wednesday where they wave uninteresting objects in front of Seth to see if his eyes follow them and then put drops in to make his vision blurry so they can look at the back of the eyes. I am hoping that they will be able to see the change in his eyesight as well but he never tests well. The hearing dept still think that his hearing is dodgy when anyone who knows Seth can tell that his hearing is brilliant.

Saturday, 11 December 2010

Classes and other mums

I went out with the girls the other evening; other mums who I know through the swimming, conductive and music classes that I take Seth to. It's the 3rd time I've been out with them and I'm so glad I do because I realised that as all the classes are finished for this term I wouldn't see them again otherwise. The classes are run by the school that Seth starts his preschool year in January so he'll still do them all but I won't be! It's great for Seth and will make things easier for me but I'll miss the classes and I'll miss talking to the other mums. It doesn't seem like 2 minutes since I first took Seth to his first class, trying to hold back the tears because it was so emotional; going to the class meant that I accepted that this was the right place for Seth, that he belonged in a school for special needs.
It was a running joke that Seth would sleep through anything- he used it as an avoidance technique and would often fall asleep in the car as we approached the school and plenty of times wouldn't wake up until time to say goodbye. He even slept during swimming lessons. Then when he realised I still dragged him there he started shouting his protests. Mostly during the conductive classes but they really made him work physically! But again I still dragged him there twice a week. & then he realised that it was actually fun and he started participating and enjoying the classes. & now 15 months later it's all over, for me at least. So thanks to all those mums who I now consider friends and I hope I see you guys soon.

Monday, 6 December 2010

Looking forward to Christmas

I'm looking forward to Christmas - the break from work and time with Seth. It'll be the first Christmas I look forward to since Seth was born. At work, colleagues would say the usual 'thank goodness its Friday' but I never felt it. Because work has been my break from home life. & home life has just been work. Does that make sense? But the balance has tipped and the weekends are less work and more fun.

I'm a bit worried about Seth's sleep patterns though. Saturday night after the party he just talked and laughed all night. Last night (Sunday) he woke up screaming every couple of hours and now he's still awake at 10.30. First of all it was screams but after cuddles he's now just laughing and chatting again so loud I can hear him from downstairs. He did have a good couple of hours sleep today (although I didn't and I'm completely knackered) but I'm worried about how little sleep he's getting. He rarely goes through the night and it is usual for me to wake up in the night to find him awake and chatting away to himself, plus there are plenty of nights when he wakes up screaming. But this is definitely worse than usual! Anyway, I'm off to get as much sleep while I can!

The party

Seth's party was great fun. It was held at Rugrats and Half Pints so all the children could enjoy it. Seth had 15 children come to his party, aged between 3 months and 6 years and the younger children and less able children could enjoy the sensory and soft play area whilst the older and more able children could play on the other bit. All good!

Seth enjoyed being there but as he doesn't really show acknowledgement of others it was hard to know if he appreciated the party aspect. However, he definitely enjoys his fab new toys that he now has - so many new things to press which light up or play music and sensory touchy-feely stuff. We directed a few people to Fine Solutions which is where our county toy library gets some of its toys and they've done quite well out of us!!! I don't think Seth slept at all the following night. He wasn't crying but I woke up several times and he was awake and talking every time so I think we slightly overstimulated him what with teh party and then opening all of the presents and playing with them.

Tuesday, 30 November 2010

Noses and birthdays

Seth grabbed my nose. We were playing 'where are your toes, where's your nose, where's mummy's nose etc etc....'. We play it every so often. However, this time was different. When I got to where's mummy's nose Seth touched my cheek. It could have been an accident so I persisted and this time Seth grabbed my nose. Course it could still have been an accident but I'm willing to believe that it wasn't. Naturally I was rather excited and we'll be playing that game a little more frequently from now on!

Today it's Seth's birthday. He's 3 today and on Saturday we're having a party. I don't know whether he'll understand the concept of his birthday (in fact I very much doubt it) or that he's having a party but he will know that he's got lots of kids around him and that he's getting a lot of attention and that's enough for me right now.

Saturday, 27 November 2010

A positive experience!

Earlier this week we had an appointment with Seth's consultant. As soon as we arrived I took Seth out of his chair and stood him up, holding his hips. The doctor was very pleased, asking how long Seth had been able to do that. So I asked Seth if he wanted to walk. Seth immediately stepped forward and started walking wobbily around the room with me trailing behind on my knees. The doctor's jaw practically dropped to the floor and stated that he never expected to see Seth walk. I just smiled and half shrugged - it was hard not to snub my nose at him. I told him that he's talking now and the doctor excitedly asked what words he was saying. I had to explain that when I say 'talking' it doesn't mean that we can understand anything he's saying! We discussed his fits - Seth has had 2 fits in 9 months which also surprised him. Although it's still a big concern he said that the longer we go without one the risk decreases. Anyway I listed all of the things that Seth can do now that he couldn't do 9 months ago when the doctor last saw him and I left on a real high which is another first!

He never mentioned another MRI scan and I didn't either. I had planned discussing my ideas about the CDC assessment and how the cognitive assessment doesn't appear to take into account visual difficulties. It's something I've previously posted on but looking back I can't actually find that post! Anyway, I completely forgot in the end; unsurprisingly discussing Seth's actual achievements distracted me from talking theory.

Saturday, 20 November 2010

Other things that happened this week

We also took receipt of another walker on Monday.
From Raising Seth
The physio and rep went to Seth's nursery so I only saw it when I picked him up. It seems a little high but it's the best one we've had so far, I think. We've got it on trial. We had a visit from our SENCO (pre school teacher)on Thursday and she seemed pretty unimpressed with it. Wanted to know what questions I had asked about it and suddenly I felt at fault (again) because the physio hadn't phoned me to discuss it at all. The physio did in fact phone on Friday to see how we were getting on with it and the whole time I was thinking 'what questions should I be asking'? She's the expert and I feel that I should be led by her whether it's suitable for Seth, or not. It's the smallest size they go so while it it a little high, he will grow into it and she tells me that she's spent a long time researching his options. I did say that the knobbly bits at the front were a risk because Seth drops his head forward and doesn't notice when there might be things to smash his face into and I wasn't sure if adding handles would help because that would be a bigger target for him. I've covered up the knobbly bits with foam pipe covering which make them safe and she seemed satisfied with that. Should I have been more demanding and asked for something from her to cover it? I'm still waiting for a foam wedge from her that Seth is supposed to be using as part of his physio excercises so I'm reluctant to start asking for anything more complicated!

Anyway, that was the last appointment I shall have with the pre school teacher. Because Seth starts Fairfields (special education school) in January for his pre-school year and they will take over everything - speech and language, physio, pre-school stuff. It'll be great cos everything will be coordinated and he'll get the therapies much more frequently. I've had to complete an evaluation of the service that the pre school teacher has provided. Its difficult to complete because I think I respected her knowledge and expertise over everyone else I've dealt with but I just didn't get on with her on a personal level and the nursery dreaded every one of her visits so I don't feel she built up a very good relationship with me or them. Craig found her great though and really helpful on a personal level so I know with me it was just a personality clash which I need to separate out when I'm evaluating the service. Its hard to be dispassionate though when it's about someone who came to the house to talk about my son. I also realise that part of my anger at the professionals we are involved with is due to having something I can be angry about and fight. I can't do anything about Seth having these difficulties and so I think sometimes it's about having something tangible to fight. Of course part of it is their lack of communication and working with colleagues! Grr.

Thursday, 18 November 2010

A crazy day

We picked up Seth's new wheelchair today. I was so looking forward to it; we've been waiting 4 months for it and I was getting really frustrated with his old one. One of the big reasons for wanting a new wheelchair was the lack of a tray. Seth can't hold things so when we are out and about we can't encourage him to play because everything falls off his lap. Plus, it makes it more awkward with feeding. So I discussed this with the Occupational Therapy wheelchair service and today was finally the day....there's no tray. When I asked why, she went away to check her notes and came back saying that she never wrote it down as a requirement. 'But we discussed it at length', I replied. Her explanation was that her remit is postural necessities and if a tray isn't going to help with this then we'll have to get it separately, or possibly contact the physio team - I'm not sure if she meant the Physiotherapist or the Occupational Therapists with whom she shares a building but either way I wasn't too happy. I did kind of explode at this and say that it would have been useful if she had told me previously about this. We then spent an hour adjusting the chair to fit Seth and when she was adjusting the foot straps I asked why they were necessary. She explained that these, along with the other straps help his core stability so he can use his hands. 'but' I replied, 'without a tray he can't use his hands'. I got no response to this.

Apparently the rep for chair manufacturer comes in the 6th or 8th of December to the office and she'll ask him then if it's even possible to retroactively fit a tray, because as it wasn't even built into the specification it may now be too late. So she doesn't even intend phoning him and so I've got to wait 3 weeks before I even know if it's worth phoning around to see if other departments will fund the tray.

On a plus note the chair is purple and I still think it's an improvement on what we had, even if it only meets half of my criteria for a new chair.

Saturday, 13 November 2010

Back home again

Wow, well that's the holiday over. I really wasn't ready to drive back home this morning. The weather was pretty atrocious but that meant listening to amazing storms tucked away in our cottage, and we never had intended doing too much, anyway!

Seth and I came down with stinking colds two days in and sleep, as usual, alluded us but we still had the most amazing time together. Seth's bed was a normal sized single, as opposed to the toddler sized one he's normally in so one morning I crawled into bed with him for a cuddle. Seth kept turning his head to look at me and then just started giggling. It was fab.

Because he was full of cold we didn't tackle any more specific physio excercises but Seth has spent the week drinking from his cup, rather than a bottle and played lots of turn taking games in the car; him making sounds and us copying him. To top it off, and Louise you'll be so proud, Seth totally made a choice between milk and bed by selecting the 'object of reference'. We weren't sure which Seth wanted so I offered him his cow print cup which he always get given just before a bottle of milk and his bear with a bell in that gets jingled every bedtime. Without hesitation Seth lifted his hand and touched the cup. To be sure we did it again and he clearly lifted his hand and touched it again.

So yeah a pretty amazing week. Lots of giggles and proud parents.

Monday, 8 November 2010


We're on holiday this week. It's a lovely cottage with a view of the sea and just what we need to slow our pace and simply enjoy being together as a family. And there is no excuse for not trying new things with Seth because we can take as long as we need and there is nowhere we need to be. So I've brought a 'next step' cup to finally try to move Seth on from a bottle and also angled spoons to help Seth feed himself. I forgot the full frontal bibs so we're going to get into a mess but there you go - there's a washing machine.

And so far Seth is really responding to the relaxed pace and Craig and he are having a really lovely time together. He drank for the first time from the toddler cup without any stress or panic this morning. He has to bite it to release the liquid and usually he panics, clamps his teeth down and starts drowning! & also this morning I kneeled him down in front of a fluffy cushion and stretched his arms down so that he could feel it. Then I realised that he was completely supporting himself with his left hand. He stayed like that for a couple of minutes until he gradually sank down. Another first! We did a dance of triumph afterwards.

I'm hoping that I have relaxed a little, too, after this week as I've felt perpetually tense these last few months.

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!

Saturday, 25 September 2010

Remembering that first year

From the first moment Seth was born (the few hours before as well!!) were unreal. Everything happened around us and to us. People have congratulated us on how well we have coped but all we did was keep putting one foot in front of the other and carry on. That first 6 months was pretty much hell; we had an unresponsive baby who I hadn't been able to breastfeed, he didn't look at us or play with anything, except to rock on his rocker which he did enjoy. Then he started to get unhappy a lot of the time and the infantile seizures began. Through this we doggedly kept moving forward. What else are you going to do? Every time we went for hospital visits the prognosis got worse and we would feel as if we had physically been punched to the floor and would have to pick ourselves up again. At first we would move forward hunched over but gradually our backs would straighten and we'd find some equilibrium again. I don't feel amazing or special in any way. It's changed me but mostly in a good way - I am unperturbed by things that used to bother me, going through an experience like this makes you change your viewpoint on life and how you sit within it. I've always been a strong person but I've had to lean on my husband a great deal and it brought me closer to him.& him to me.

Saturday, 18 September 2010

Seth has been on his new medication for a few days now and it does seem to be having a positive effect which is fantastic. He still has tummy aches but he's seems happier in himself plus I think he's teething (just 2 more teeth to go!!!)which could be confusing the issue. One slight worry - he had a fit last night. The first one in almost 6 months. It was late evening, Seth had been asleep in bed and woken up crying (not unusual!). Before I reached him he had stopped crying and when I looked in he'd kicked off his covers, his whole body was shaking very slightly and he was staring fixedly off to one side. I automatically started timing it and spoke to him gently. After 2 minutes it stopped and then he started crying again. Today he was very flushed so I assume the whole thing was bought on by the teething, or simply being poorly.

I went to the crafty shop last week and I bought my sticky velcro etc and now I can clip Seth's 'hello' button to him. He's been using it all week which is great. He doesn't really react when I put his hand on it, but if it goes off by accident when he's sitting down he finds it very funny. Mostly because it's his daddy's voice that's recorded, I think.

I've also got his sensory room going! It's just his bedroom with the curtains drawn but with the various lights against the dark, purple walls it's very effective.

Friday, 10 September 2010

Why I don't trust professionals

Seth has constipation. I went to the doctor about a year ago about this and I was given a prescription for Lactulose. This didn't work so I was told all they could offer me were suppositories. Since then it's improved, Seth only goes once or twice a week but it's no longer painful. He suffered from stomach ache sometimes though. I tried Lactulose again once but it just seemed to increase his wind and stomach ache so I stopped. I always mentioned it at meetings but never went back to the GP because there was no point. Then at the end of last term another mum told me about a Constipation Clinic at the hospital. Seth's tummy aches got more frequent so I phoned the doctor to try to get a referral. He told me that I should persevere with the Lactulose and to make an appointment and then maybe I could get a referral. So yesterday I finally got to see our fab GP - it takes over 2 weeks to get an appointment so you never get her when you want a next day appointment. It's like you have to choose - either get a professional opinion straight away but get varying quality levels of informed opinion. Or wait 2-3 weeks to see someone who actually knows what she's talking about! It's like the shit doctors aren't popular so have more time free so when you want a quick appointment you always get offered them! So anyway I have now discovered that there are in fact alternative medication and that Lactulose is renowned for causing wind and discomfort, especially in children. So all this time Seth has been suffering when he didn't need to. & I trusted what a doctor told me without questioning it. & here I thought I had stopped being so naive!!
So, tomorrow we start on the new medication and look forward to the referral.
I feel like I'm fighting all these battles and this week I'm exhausted by it. Seth's mobility is improving - although he still doesn't move independently his doesn't fight against being rolled anymore, he mostly enjoys it and will even move his arms to help. My goal now is for him to start bearing weight with his arms and hands and we're starting to see the first glimmer of this. Then there's communication. I try to sign and use consistent language all the time and Seth will often vocalise or sign enough that I can understand his needs. However, when he is off his game (or maybe it's me that's off?!) he just shrieks at me or he'll sign that he wants a drink but then will refuse it and then start shrieking. My patience degenerates really quickly. If he were a child with no difficulties I wouldn't tolerate such behaviour. Seth's physio exclaimed last week how Seth seems to know exactly what you're asking of him. It was gratifying to hear that but so then he must also know when he's being naughty and completely winding mummy up?! Maybe he simply gets as frustrated as me! Maybe I'm pushing him too hard and not recognising when he's just tired and wants some time out? Or maybe he's just being a 2 year old little git. I've got hold of these recordable buttons and trying to work out how to use them. We've got a 'hello' button, a 'more' button and a 'finished' button. I haven't been using them consistently at all so I think I'm going to tie some sticky velcro (or something!) to his 'hello' button because it's never close by when he's being greeted and re-record the other 2 to 'yes' and 'no'. Maybe that will help...

Sunday, 5 September 2010

Since the Northampton NHS professionals (distinct from other professionals such as Speech & Language therapists from Milton Keynes :)) have stated that Seth's cognitive development is only that of a 3 months old I've been pretty confused by what 'cognitive development' actually is. The other development terms are 'physical' and 'speech and language' so surely cognitive surely means intelligence - Seth's understanding of the world around him. Certainly this seems far beyond a 3 month old. So I've finally googled the term and come across a Wikipedia entry for Piaget's theory of Cognitive Development. Now I remember this from my psychology A level and I do now better understand how they are meaning it. If you follow Piaget's model then Seth would appear to be in the 4-8 month banding (still better than they said!!). However, this model really relies on vision and Seth has visual difficulties so surely you need another model? I have found a site with some interesting research. If I am going to help Seth understand and interact with his world I'm going to need understand how his visual difficulties may be impeding this and then what I can do to bridge that gap. Of course not really understanding what he does and doesn't see doesn't really help!!

Saturday, 4 September 2010

Seth did the most amazing thing on Thursday. I was feeding him his dinner and he reached forward and grabbed the spoon. He has reached towards the spoon a couple of times in the past but has never been so precise in his movements. Amazing.

There is a woman who I have 'met' on Facebook called Lesley Bell and she has set up a page there called 'Helpkidswithcerebralpalsey'. She is having to raise funds for a rifton pacer. This piece of equipment will enable her daughter to walk but the NHS won't pay for it because they say it's a luxury. Since when has the ability to walk been a luxury?!! I am lucky enough that we haven't wanted for any equipment so far. Judging from the comments on Lesley's page it seems very much dependant on where you live.

Friday, 3 September 2010

Spending time with my friends' kids can sometimes be bittersweet. I love spending time with them and tend to be utterly enchanted by them. Their large eyes taking everything in, their curiosity and exploration, the sounds or words they come out with. But then comes the sour note; these are things that Seth doesn't do. & whilst I'm enjoying these kids it throws these differences into stark contrast. These days I'm a lot more adjusted about it all. There was a time when I stopped going to mums 'n tots classes because I couldn't bear it. But that was when Seth was only 6 months old and I was still coming to terms with everything (hell I'm still coming to terms with everything!). Thing is I would never avoid my friends' children, that would be much more sad than the twinge I get every so often.
Going to groups where the other children have additional needs definitely helps. Initially, there is a different pain going to these groups; by going you are accepting that this is the place for your son, that he belongs to this group and that he isn't 'normal'. I found that some kids are more able, but some kids have lots more difficulties than Seth. It definitely helped me accept Seth as he is, and be grateful for who he is.& in turn this stops me comparing him with other kids all the damn time.

Tuesday, 31 August 2010

Well the 'craft project' has had mixed results (see previous post where I stuck photos of Seth's daily activities to card). I rarely used it to explain Seth his day; I discovered that I had put them too low down on the wall. Whilst prone he can't comfortably see any of them and when he's standing they are too low. However, I have discovered quite how much Seth uses his feet at night; he has enjoyed rubbing his feet against the different textures I had stuck to the letters and has rubbed all of these and all the glitter off. So, I have moved the ones that are still intact higher up the wall and will recreate the others. & now I want to make something specifically for his feet to play with! I was thinking of putting a large touch pad on the wall with which he could turn his light on, but I don't even know how to start with that. The idea came to me when Seth was playing in a sensory room with pads that played music when touched. So if anyone has any knowledge about this please let me know.

Sunday, 22 August 2010

How do you know when a protest is a genuine cry of frustration or an almost 3 year old acting up? & is Seth not doing something because he truly lacks the ability or is he trying it on? Seth has these temper tantrums which I actually love because they are just so, well, normal and they show his personality coming through. But knowing that he is strong willed makes me question how often he doesn't do something because he simply doesn't want to, and not because he can't. It's actually a great dilemma to have although it drives me crazy.

Tuesday, 3 August 2010

Cerebal palsey. I still have real difficulty with this term. Some time ago I noticed it on a note passed between consultants and as no-one had mentioned it to me I confronted them about it. At the time they were vague and said it would be something that might be diagnosed in Seth's future. At Seth's assessment a few months ago I asked if it was something they felt he had at I was told no. However, today a mum whose son has very similar physical difficulties to Seth told me that he had been diagnosed with cerebal palsey. So now I'm pretty confused. I don't want Seth to have cerebal palsey because it conjures up images of children and adults sitting awkwardly in supported wheelchairs. & yet what little I know of it, it does seem to fit with the fact that Seth has low muscle tone and struggles to use his arms and hands to hold things and support himself. So why are the 'professionals' reluctant to use the term? Hey, at the end of the day it's just a label and doesn't really make much difference but it's yet another example of the contradictory information that we are given even within the same County Council, depending on which 'professional' is assigned to you!

Anyway, today a small group of us attended a disabled children's session at Rugrats and Half Pints in Banbury, an indoor activity centre. I recommend it for all kids.

Sunday, 1 August 2010

I was annoyed at myself. Yesterday I was seriously pissed off, short tempered and impatient with Seth. I was hyper aware of him and that made it worse. When I started the post this morning I was intending to convey the bad place I was in. The whole point of this blog was that it was intended to be a place I could let it all out, let off steam and get the crap off my chest without burdening Craig or friends. & yet I was surprised how positive it's all been and even this this morning's post ended on an upbeat note. Is it because I know people are reading it and that curtails my honesty? But I've deliberately shared my posts because I wanted something positive to come out of it - I wanted to be able to share my experiences, what I learn in the hope that it might help someone else going through what we've been through/are going through.

Yet reading back through this morning's post it feels honest. & Seth has to only do the smallest thing and it lifts me completely. It helps that I have had limited contact with the hospital - that usually sends me spiralling down. The fact that I keep cancelling appointments might have something to do with it! If there's one thing I would share it's to take control of those appointments early - don't go just cos they make them for you; find out exactly what the purpose is and what you all will get out of it. I actually had a Speech & Language appointment - I took time off work, took Seth out of nursery and when I got there when I asked the therapist what the purpose of the appointment she actually said she didn't know but that we could spend the time having a chat. I never saw her again. I've never met anyone who finds her useful so how is she still working there?!

Anyway, enough of the rant. I have reassured myself that I am still being honest with these posts, even if they are more positive than I expected.

I'm not blind. I know that it's possible that we will be still feeding Seth his meals when he's 40, or still changing his nappy. But that way is the way to madness. Not that the thought doesn't strike me sometimes. When Seth is showing new awareness or skill then it's easy, but when that development pauses as it inevitably does, that's when the fear creeps in. I hate that as soon he gets in his chair he rocks back and forth. It's not enough that he shrieks with delight because I want him to be delighted by the toy on the tray in front of him. But then as I'm typing this Seth has stopped bouncing and is talking and reaching out to touch the toy. He's looking at it and in an instant my fears move back to the shadows. He IS aware of things around him and he IS trying to interact with them. Moving his own body is simply still much easier. But...if in the end Seth doesn't move on 'cognitively' as I'm warned over and over again by the 'professionals' I hope I can find peace with that. Right now though I'm back in a fighting mood.

Friday, 23 July 2010

Everything's on the up and up

which kind of worries me. I don't want to relax too much because from past experience just when you think things are going to be okay Seth starts fitting. But at the same time I don't want to be looking for trouble! Apart from one small 'blip' Seth hasn't fitted for a couple of months - in fact I've now stopped counting the weeks. & he's sitting. Properly sitting on the floor by himself with a much straighter back. He can sit and move a ball with his fingers and tonight he did it and started giggling. Fantastic!
It's a good job too because I don't want to have to rely on a floor sitter - it's exactly what it sounds like and this week the company sales rep came to demo one with our physio. The appointment was made a couple of months ago but when she turned up she announced that she didn't carry that item in her demo stock. What a waste of time! These companies do whatever they like - they set ridiculous lead times for new equipment and repairs and then charge the earth. & some of the build quality is really shabby. But there seems to be little competition, they're dealing with busy community workers and they get away with it. I don't think we're going to need the floor sitter anyway, but I have no idea when Seth will get his new wheelchair whilst the brakes of his current one keep seizing up. Maybe it's time to start naming and shaming these companies....

Saturday, 10 July 2010

We were given a development diary some time ago by one of my many 'professionals'. It hasn't any ages associated with it and simply allows you to tick when Seth shows new physical, social, cognitive etc abilities. It's very large and detailed. As Seth always seems to be doing something new every couple of months I get all hopeful and open this diary with pen ready to tick off new boxes. & yet I'm lucky if I can find one thing that he's done. I think I've finally realised that this diary is for development which is delayed but should still follow the right route. Seth is developing but it's never going to be 'normal' so I think it's time to stop trying to tick boxes.

Tuesday, 6 July 2010

Finding support

I started this blog because I didn't know of any online groups to share my experiences with. But then looking for ways to get my blog 'out there' has led to finding some groups. So I have gained another benefit from doing this. I've mentioned Nutmums before but I've now discovered their discussion forum which is great. In addition, there is a Facebook group called 'Bristol is able' which has expanded from Bristol only members such is the nationwide need for online support/discussion groups. Certainly being able to connect with people in a similar position to me is great relief!

I have finished my project and it has been duly stuck on the wall around Seth' bed. He seems to like having them there which is a good start! Today Seth was amazing in swimming class; he held onto the rail and even slid his hands along it. Plus he vocalised in response to the teacher saying hello. In addition to all, this I finally made it to the toy library so I've got some new toys for the next month for the princely price of less than a quid.

Saturday, 26 June 2010

This morning I woke up with a memory of Seth when he was a baby. I used to lie him on the sofa (there wasn't any risk that he would roll off) and dangle toys over him. I could never let him simply lie there, I always needed to try to stimulate him. But he never responded to them, never reached out to them and at the time I didn't understand why.

I'm not at all crafty so it's been a challenge but I wanted to create something that would help Seth understand his week. One idea I read about was to photo his activities and show them the correct one for each day. But we don't know how his sight works and if he would 'see' the pictures. I've done it anyway. and I've stuck them to card with the letter for each day of the week stenciled on it. I've then made each letter a different texture and colour. I'm going to stick them on his wall by his bed, in reach. and each morning I can show him the photo and let him feel the letter, for that day.

My mum bought Seth a present this week. It was a plaque to hang in his room. It says "the greatest pleasure in life is doing what people say you cannot do". Its a great plaque. I've been carefully stencilling out letters and sticking different fabric to card and I have such ambition for these bits of card but I don't actually believe he'll ever look at the photos or reach out to feel those letters. I'm still doing it though.

Thursday, 17 June 2010

Simply magical

Last night when I put Seth to bed he looked right at me, stretched out his arm and raised his hand. Every night I wave 'night night' and very, very occasionally he waves back and when he does it is simply magical.

Friday, 11 June 2010

Things I've discovered

This is an unconnected collection of things I've discovered (at least that I can remember right now):

Netmums website has a Special Needs area in their Advice & Support section. It has a directory of national organisations plus you can search within your town/postcode.

A really great book I bought is 'Small Steps Forward - Using games and activities to help pre-school child with special needs' by Sarah Newman. It goes through the various stages of development and, as the title suggests, gives games and activities for each. I've found it great to dip in and out of.

If you haven't had Speech & Language therapy for 6 months you are entitle to apply for a £500 voucher from the charity Cerebra. We applied because I hadn't found the community offering at all helpful. The voucher comes with a list of therapists in your area and I can't recommend Louise Bridgens enough. Although the voucher has been used up we have learnt communication tools that we can continue to use and Seth really enjoyed the sessions.

I was looking for recipes that would help to alleviate stress, insomnia and reduced energy levels and came across Good Mood Food which lists foods that are good for different conditions, and Food and Mental Health which has tasty looking recipes.

Tuesday, 8 June 2010

Dealing with the experts

We have no idea what to expect from the future. At every consultant appointment we have dire predictions; Seth will be physically and mentally disabled..... he might never walk.... he might never talk.... he will reach a point when his brain is unable to develop any further...we were even shown his brain scan to drum home the terrible extent of the damage. At the latest hospital assessment strangers spent less than an hour with Seth and then we were handed a report which told us at what level his cognitive, speech & language and physical development was at. According to them nothing much has improved since his previous assessment when he was just a year old (and at that point he was months and months behind), and it's possible that he will soon 'plateau'.

But here's what I know. He can walk a few steps(if supported) and his unsupported sitting is improving. He can totally understand what I'm saying to him and is trying to speak and sign. He does new things every day. He struggles with everything but he achieves so much. Whether the experts are right or wrong makes no real difference. Seth will do whatever he can and we can only do everything we can to support and encourage his continuing development.

Sunday, 6 June 2010

Getting access to appropriate childcare

Today has been a good day. Seth goes to a mainstream nursery two days a week and the nursery has been fantastic. But he needs a lot of extra support which I feel they've been struggling to provide and so I've been trying to get the LEA to let him start preschool at the local special needs school this September even though he won't yet be 3 years old. Whilst I haven't been successful at that (he'll start in January) they have agreed to pay 15 hours of one to one care whilst he attends his nursery. And it will start in July (the education office will pay term time and SENCO will pay in the holidays). What a result! What helped was the following extract of a report produced in December 2009 by the Council for Disabled Children, for the Department for Children, Schools and Families. The report is titled Disabled Children's Access to Childcare. Information for local authorities. Another mum in a similar situation found it and sent it to me. Thanks Vania!

From this report:

'The Childcare Act (2006) imposes a duty on local authorities to secure

provision of childcare sufficient to meet the requirements of all parents in

their area who wish to take up, or remain in work, or to undertake education

or training that may lead to work. Section 6 specifically requires local

authorities to secure childcare provision for disabled children up to the age of

18. In this context, childcare must be ‘sufficient’ in terms of the number of

places, affordability, and appropriateness. In keeping with other activity,

local authorities are advised to undertake development work in partnership

with people who use the services that are provided. A duty to improve

information for families with disabled children about childcare options

available in their area and about financial help is also embedded within new

duties to provide information, advice and assistance set out in the Childcare


Saturday, 5 June 2010

and so I begin

Seth wasn't breathing when he was born after a prolonged birth and having shoulder dystocia. He then spent the next 10 days in the special care baby unit. At the time it seemed forever, but looking back I'm amazed he came home so quickly but we attribute it to his 'fighting spirit'. I have since been advised that it is likely that I had a virus just before I went into labour which passed to Seth. This weakened him and he wasn't getting sufficient oxygen throughout the labour. The shoulder dystocia, and the several minutes this deprived him of oxygen, was just the last straw for him.

When Seth was 3 months old we were told that he had brain damage and that he was very likely to have severe developmental problems. He's now 2 and a half.

I'm writing this blog for several reasons. To document what we've been through, and will continue to go through. To scream out my frustrations and to celebrate achievements. And to hopefully be a resource for other parents who are going through a similar experience.