Osteopathy and cerebral palsy

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

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

I haven't got time to be tired!

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

Sponsored Travel

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

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

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

end of term 1

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

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

I'm still here

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

Hopeful Parents - The Anatomy of Swinging

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

A bit of comfort eating

The car is ordered! I should get it 1st week of March and I'm very excited. It'll look like this:

From Raising Seth

You can't tell from this picture but it's huge - I'm a little daunted by it but when I did the test drive it was so easy to drive and it's got rear parking sensors so hopefully I'll be able to park it!!!

We now have a tray for Seth's wheelchair.

From Raising Seth

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

Yesterday I had another fit of baking and attempted a victoria sponge.

From Raising Seth

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

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