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.