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!!!
Our son, Seth, had brain damage at birth. This is a personal account of raising a child with additional/special needs. It may be just a cathartic process for me but I hope that it becomes more and that other parents find it helpful, through shared experiences
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Thursday, 19 May 2011
Tuesday, 17 May 2011
Camping
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.
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| 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!
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.
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.
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