I don't have the energy to write tonight. Had so many marvellous waffles to share. But today is my long day. Awake just before 7am to receive my first client (I am a childminder!) just after 7. Last lot left at 5 today! But then there is dinner, swimming lessons and usual faff. Mary is still awake now and demanding bread. So gone 9pm I still have had no time to myself.
I did have about 20 mins to chat to one of my swim mum friends. Lovely lady. Has 4 kids!! But enjoys it all. Oh except the squabbling. I can relate. Still Katy is being a poppet so can't complain too much.
GSD. Arggh. I can't tell and no one will tell me either if what I am feeding Mary is right. She takes ages to eat her breakfast. But I have been told we cannot starve her. I am of the opinion that if you chose not to eat the food put in front of you then you not hungry so can wait til next meal. This works for Katy. There are.some days she is just less hungry than others. Today not being one of those. Must be all the Olympic trAining. Mary on the other hand can be starved due to her GSD glycogen storage disease (please look it up if you want to know more. This is my moan blog not a medical.dictionary!). Although she has shown no lowering of blood glucose overnight nor raising of ketones. This is supposed to be a good thing. But do I continue to argue with her over her not eating breakfast. I err on the side of caution and make her finish. One hour this morning it took. Lucky her taxi was late. Then tonight, busy day at school, a school where they still can't grasp her needs but she has to go because they have the "deaf" " experts". Followed by swimming. So again I err on the side of caution and give her a slice of bread and butter.
This brings me to doctors and teachers. I had a lovely chat with the community pediatrician this morning. Apparently already had mary's file on her deaf when I called last week asking to see her. Who knows? One loves to think yes. Anyway she seemed to take my concerns seriously and we shall receive an appointment in due course. So qe shall see what her team can deduce about Mary. She is definitely odd. The medical medics can't seem to fathom her but as she is odd the teachers want to know.how best to deal with her. Everyone wants a diagnosis. A list of phenotypes, how the genetic disorder presents. Why is the child like it is? As Richard Dawkins brought to my attention, see Twitter is paying off, Genetics is not straightforward and there are all sets of interactions. But Mary is.just Mary and hopefully the community team with their OT, PT, SALT, psychologists etc wi give us a plan of how to deal with Mary. That will hopefully make the teachers happy. Oh made me mad, I don't usually get very mad. I spoke to her special teacher today. About equipment etc. She did say it was very important I hear Mary read everyday and write it in her yellow book so she can get a sticker reward at school. Apparently Mary's face was very sad when she didn't get a sticker today as I had not written in the book. Come on woman. I use all the bribing and cajoling skills to get her to eat by herself, to get her to change her clothes after school, to help me a little by tidings up after herself. Do you honestly.think there.is anything left to persuade her to do reading?? That said we did manage to read a bit tonight and more amazingly this is a big wow for my complicated six year.old.
I was chatting to mary's swim teacher after the lesson. Mary had wandered off to near thwarting changing rooms. I did see her at the edge of the baby pool. Not worried. Anyway when I eventually got up to where I last saw her no sign of Mary. It is busy lots of people, I can't shout for her- no ears on. I am not panicking yet. But I am getting concerned. I go to the locker to find her bag is missing. So I think she must have gone to get changed. Next thing I see is a naked Mary streak out of the ladies loo into a changing.cubicle. Door slams shut and locks. I loiter outside and a few minutes later Mary emerges fully dressed with her bag packed. Big grin on her face. Now why can't she take herself to the loo after school? Why can't she scoop her own cereal? The enigma which is my Mary!!
Katy had a good swim too and basically was a pleasure today. Just gotta sort out the professionals.
Hopefully I shall get to my musings on that soon.
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