Thursday, 21 August 2014

Harrods Disney Cafe

Happy Birthday Ginny

8 years ago today my life changed forever. I didn't find out for another two years how drastic that change would be but all the same demand to grow up was a colossal shift in itself. I became a mom still a child myself and everything for the rest of my life would be different. I still look at my girls every day and wonder how on earth I made these little creatures, I blame myself for Ginny's disabling life long condition because no matter what anyone says every miswired connection in that brain of hers was one made within me, and I spend so much time trying to make life a manageable for her. 

8yrs down the line and she requires more care and attention than she ever did that day or any other of her infancy. Today we'll have no party and no pile of presents. The years have showed us how little she cares for conventional gifts. We were meant to spend the week camping in three cliffs bay as there isn't much she loves more than the outdoors and the water but those plans had to be cancelled because of my spinal injury so today we'll go to London. If she sees something she likes we'll get her it if not than at least we've had a nice day out, at some point we'll have cake. Tomorrow we'll go swimming, hopefully have a good run around at the park. We'll make the most of daddy's two days off and give her a happy and hopefully meltdown free time away from the stresses of carers who can't manage her and the confusion of being off school for the summer break, maybe we'll manage a smiley picture or two, who knows. 

It's not the way I imagined life would go all those years ago but it's the life we live and will continue to. It's another year we've made it through and another full of small steps forward and big ones back. It's a year her lack of self preservation and understanding danger hasn't killed her, and that should be enough to celebrate so Happy Birthday Ginny. Were going to make it through this and hopefully one day it won't be so hard.

Friday, 8 August 2014

Day1 of over night wake in care for observation, part 2:

As the carer left this morning she said she would tell her boss that she didn't feel she could responsibly leave Ginny asleep in her room without the lock after what she'd witnessed during the night. 

Apparently after sending in her report she was immediately phoned by her supervisor who asked if she was sure she wasn't at all exaggerating and that all she said was true! The carer assured her supervisor that every event she'd accounted for and that mum could vouch for it! Her supervisor then responded that they could completely understand why the lock was in place and that they couldn't understand why it was being disputed!!

OT rang back today to say they had a few people to speak to and they'd be getting back to me Tuesday but that they wanted to know how the first night's observation went after I relayed to them how bad a night it was they said that was 'brilliant, well done Ginny' because it's best for referencing that reports are on the worst case scenario so a good night would have been a terrible start.

Thursday, 7 August 2014

Day1 of over night wake in care for observation, part 1:

Day1 of over night wake in care for observation: 

Within two hours the poor, incredibly experienced carer, from ISS had to call me in for back up! I have never in my eight years with Ginny seen her destroy a room so badly! She wasn't tired enough to sleep as the day support that should be in daily because of my current conditions has been halted over the whole lock issue and boy does it show. 

The curtain clips have been snapped off, her pendant light destroyed, and she stripped off and did a wee. The carer said she has never in all her years seen a child do anything like this. She also said that social is not going to appreciate her report as she doesn't understand how they with any form of conscious try to tell me her night lock should be removed and that she will say that aside from that additional care needs to be put in place as poor Ginny and the rest of us our suffering over this whole situation. 

Aside fro the current matter she said she can not believe the measly amount of standard support I receive and that she thinks I'm a saint, ha! That really made me laugh but she also added that she has never had to call on a parent for back up. 

Ginny was so stressed I allowed her some ipad magic fingers time to calm down and she's now back in bed and finally started to nod off!...I really hope the lovely woman in this evening doesn't have anymore meltdowns to deal with this evening! 

Padded Room or Babyproofing Lock?

Just had a chat with OT as social services has rereferred her with regards to the door lock. To say the least the OT who actually works with Ginny at school was pretty shocked as my lock is pretty mild in comparison to a pop up padded room tent which surprise surprise Ginny would be locked into and is the only thing OT would usually suggest for a child of her physical capability with her limited understanding of safety and self preservation! Well done social on your lack of knowledge and understanding in cases like our own!!!

Friday, 1 August 2014

Donations for The Little Princess Trust

It had been agreed because this summer has been so hot, that the girls would have their haircut shoulder length. A few days ago, Melody, my 5yr old began feeling a bit apprehensive until just recently she just walked over to me and said "mummy, what about the little girls who lose their hair because they are very poorly? Can we give them our cut hair?" As you can imagine I felt beyond proud and we immediately found a charity she wanted their hair to go to, very fittingly The Little Princess Trust. I don't know how I am still astounded by Melody's compassion and thoughtfulness but I am, and I feel very blessed to have her as a daughter. Aside from walking into the salon today and announcing her and her sister's hair would be sent to her picked charity, she found sweets to give her severely autistic sister while she had her hair cut, to make it easier for her to manage. Here are some photos of my little angels and their day at Capelli's Hair Cutting Company in Southdown, who have always gone above and beyond to give my girls a lovely salon experience since they were tots.