Support and the Education Board (It’s a shame they are not related!)

5 Aug

Well, so much for my uneventful couple of weeks! So far Jac has had random high numbers with blood in his cannula a few times, he has had massive mood changes due to the high bloods, with tearfulness and rages, mixed in with a desperate need for cuddles with me his mum. His big brother Meical has also been diagnosed with shingles near and in his eyes and has 5 different medications for this. Now we have to watch for all the complications for Meical that could come from shingles, and be aware in case Jac gets chicken pox from Meical’s shingles. It never seems to be easy! Just when you think you have things on an even level something always happens to throw a spanner in the works.

He loves his t-shirt from the Diabetes Uk Cymru family day in Bangor!

We have also just heard that Jac’s appeal for extra funding at school has been turned down by our local council. It would seem that they expect him at 3 years old to deal with his own diabetes, check his own glucose level and deal with possibly incredibly debilitating low blood sugar levels. I know that the school would never let this happen, and are going to do their best to learn how to care for Jac, but how on earth can someone who is uneducated in Type 1 Diabetes possibly make the decision that Jac is unentitled to extra help? The education board that made this decision must be crazy! I would love to meet them in person and give them a lecture of how our lives are now structured. My family life is amazing and I love my boys so much, but if people realised that everything we do is based around Jac’s health needs they might realise that it is not easy, and every minute of every day is a challenge. We have to judge Jac’s glucose levels, if he is high we give extra insulin and because of the high levels he may feel moody and irritable, if he is low we give glucose and he may feel tired,  groggy and poorly. We also need to make sure Meical is involved and has his own special time without him feeling left out. Wherever we are and whatever we do, we are always watching for signs of strange behaviour from Jac, to alert us to fluctuating blood glucose levels. But how can the council say he doesn’t need help is beyond me! I now have to mentally prepare myself to fight them to help Jac when I’m not feeling particularly boisterous at the moment.

Which brings me to another subject of support. I come from a relatively small family, and only have my mum living close by. My husband is also from a small family, and his parents both passed away when he was a teenager. So that leaves us in the position of only having my mum to care for the 2 boys when I need to go to work , or to sometimes  have a rare night off! But I would like to give thanks for my mum, because she understands how much pressure we are under, and she also knows how important it is for myself and Michael to have a night to ourselves to have a chance to catch up on some sleep! She has learnt how to carbohydrate count and to programme Jac’s pump with his insulin needs, so that for once a month (or more sometimes!) she has the boys sleep over at her house, and myself and Michael go for dinner, drink too much wine and sleeeeeeep! (albeit with the phone next to the bed for any problems that might happen,)So, I would like to say a big thank you to my mum for being there for us. We have no one else to help and appreciate the effort she makes for us.

We have a big trip down south planned for a couple of weeks time, so lets hope we manage to deal with that and everybody is healthy by then……

Support for the family from my mum

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One Response to “Support and the Education Board (It’s a shame they are not related!)”

  1. B. Laycock August 6, 2012 at 4:05 pm #

    A problem shared is a problem halved, so they say. I am so proud of you all, and the way you have learned to be such ‘experts’so quickly dealing with a life threatening illness. Any Nana would do the same, and I am honoured that you trust me with the children so that we get some time together for sleepovers and just doing different things. you deserve time to be a young couple going out and doing things other couples take for granted, with a baby sitter. Besides how would I keep up with the ‘in’ games and children’s television programmes otherwise! Proud Mum, in law and nana.

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