It is sooooooooooo hot ! Although really it's hardly soaring heat but i am so not used to it that it feels like it ! lol This weather change has brought a few changes of our own ! Last summer was pretty pants anyway ! plus as we were still getting to grips with all of Charlie's problems we didn't really get out that much ! This year i am making much more effort to get out there and not be a hermit ! But this in turn is soooooo difficult ! Charlie's Albinism means we have to be SO SO careful in the sun ! He hates wearing his glasses so getting him to wear his tinted ones has been a real battle but he is in so much pain when it is bright and i think he might finally be learning that they do help and aren't as evil as he first thought ;-) lol His sleeping has been so bad this week ! well even worse than usual lol he was going at least 1.5 to 2 hours between waking up at night but this week it's been half of that ! I think it is a mixture of the heat and being more stressed out than usual with his eyes etc , plus being for another fitting this week for his protective helmet that can't come quick enough so it's been a bit of a mad week for him.

He is so hot too which doesn't help and i have to keep him covered up as much as possible so not like i can let him walk around in shorts and t shirt like i normally would so i think thats another factor adding to his not a happy bunny mood ! I think, i hope! it will get better when he is that bit older and i can explain to him why he has to be treated differently because he is different from other children, and special of course !

So whilst i would normally love to see the end of the grim weather and start of the beaming sunshine it's really NOT a good thing when you have a child with Albinism !!

I am putting in a claim for DLA for him this week, my health visitor and some of his other consultants advised me ages to do this but i have been putting it off for months, not really sure why , i suppose partly because if i am totally honest i wasn't ready for him to have a label saying that he was officially disabled and also the fact that it is like a flaming novel and sitting down to fill it out takes HOURS and thats no exageration ! Some of the questions are so ridiculous !!! eg: it asks how it affects him and gives you a 2 inch box to write it in ! THEN they need to know how many times a day this is the case and for how many minutes each time etc.... i mean come on !!

I will be on a training day this week for parents of children with visually impaired children which should be really good and i'm hopeing i might even meet some other mums of little ones with nystagmus to talk to and compare notes so to speak !

Well i better go and do some more raindancing so that we can venture outdoors this weekend ( sorry sun worshipers ! )