Another daisy here. I could express a full 9oz bottle for the dcs night feed in just a couple of minutes. Mind you, you'd think these ridiculously oversized objects would be good for something, other than causing men to speak to my chest instead of my face.
I have had a very odd couple of days. Spent most of this week arguing about what was agreed at the school/lea/inclusion meeting before Christmas and then retyping the actions, whilst simultaneously trying to get a CAMHS referral for ds1 and speak to our statementing officer about getting him into an out of area, independent secondary. Been meeting myself coming back between phone calls, answer machines, call backs and emails.
GP said Paed had to refer to CAMHS, so to arrange an appointment with him. His secretary said ds had been discharged - he hadn't - and there are no appointments until the end of March. Eventually got to speak to him and he said CAMHS won't see ds because it's school related anxiety and therefore the EP should be dealing with it. BUT Paed was on the ball and keen to help, so is calling the EP himself to come up with a plan of action for current school anxiety, sorting the school out so that the cause of the anxiety is removed by them supporting him properly and also sorting some proper emotional support through transition.
Then today I took ds2 for his OT assessment relating to his hypermobility. What a revelation. Saw a fantastic OT, who is the lead OT for our area and is amazing. I thought we would just get fobbed off, as we were with physio, but no.
- They are going into school to assess his seating and support and tell them he needs specialist seating.
- They are going back to paed physio, who refused to see him because he'd already been seen at the hospital by useless main physio dept, to ask for advice on pain and pacing and to try and get them to see him.
- They are arranging for the school nurse to work with them and school on a care plan to ensure he can tell someone when he's in pain or exhausted.
- They tried him with lots of different pencils/pencil grips/cutlery/rulers etc and came up with the best ones to suit his needs. Also noted during this that his fingers are extremely hypermobile - in that the end joint of his index finger bends back severely if using the wrong writing implement.
- They are sending in a specialist PE teacher to the school to teach them how to differentiate for his needs during PE.
- They are referring him for support from the physical disabilities inclusion team!
I was gobsmacked at how helpful they were - much better than when ds1 was assessed.
I was also
when the got him to tell them about all the things he struggles with and how much pain and exhaustion he suffers from. We really haven't given his needs enough attention what with my health and the last few years of battling for ds1 and I have to admit, I hadn't really taken in how bad things have been for him. He rarely complains and if he does complain or cry, then things are really bad.
I dread to think how the school is going to take it. I did explain that we are already persona-non-grata at the school because of our fight for ds1's support, but they were lovely and said I'm not to worry, let them deal with it.
THEN, when I got home, I had a message from dh to say the LEA is approaching the independent school we want to see if they'll take ds1. The school has already told us they don't see a problem, so fingers crossed. It doesn't mean the LEA will agree to send him there and we still won't hear either way until February, but the SO said school placement is very much open right up until the name actually goes on the form and she has altered the file to put the independent first for us! (We are confirming this in writing of course.
) I think it helped that she came to
that meeting, saw what things are really like and that we aren't ogres, just parents that care about their children and have been really messed around by the school.
Meantime, the school
still isn't supporting ds1 properly, as in not doing the things they agreed to at the blooming meeting and ds1 is a mess, manic one minute, exhausted and despondent the next. Same-old-same-old.
Anyhoo ...
All that has meant that I have been too busy to fit in meals and have easily come in under my calorie etc goals on mfp this week. In fact, I have just eaten my breakfast at 2.00 pm for the second day running.
It also means I haven't had much time to sit down, so - although my foot is officially killing me, hopefully I've been burning a lot more calories than I was during the previous few weeks.
I have a fridge full of salad and the sun is shining (albeit it in a freezing cold wintry kind of way) so I am feeling much more like eating it than I have been.
Only sticky moment was when I was exhausted last night after the dcs went to bed. Nasty chocolate craving that wouldn't die BUT I didn't give in, even though there is a tin of tunnocks caramel bars in the kitchen and they are one of my favourite, favourite treats.