The living is easy?

 Well- its June.

I've still got my Christmas lights up outside.

And I've hit a slump. 

I tried to pour good things into my soul last week- beaches, sun, fish and chips, barefoot walks and wine

and nattering- but it just about filled a cm of my positivity tank. 

I'm not sure i know what feeds my soul anymore. Its been so long since I had time to myself to enjoy what I used to enjoy- gardening, printing, collecting driftwood and pebbles, lunches out with my husband. I'm all dried up. 

So many people i love are having such a hard time with their brains and their bodies and I just don't think I can do anything to help them because no one is helping me. 

I need a break, respite with my husband. I want  to write " this week I am on annual leave"  on my email notifications. I've been caring for my very unwell teen for almost 4 years now - straight out of hospital. I've driven her round the streets, taken her to a&e, helped her with every single aspect of her life- because sadly the people who were being payed a lot to help her - haven't. They know what needs to be done, but they just can't get the funding, or they leave, or they are told by the 'ologists' to do the wrong things. 

I want to buy a mobile home and just drive to all the beautiful beaches I can find with my girl- but I'm so dried up i don't think I've got the energy to do that. I've barely got the energy to think about what we could do today. 

Lockdown was an absolute bastard as a carer.All my daughters favourite activities were closed or too far from our home. She tried to go to college but she was in a support bubble alone with 2 staff. For a 19 year old, this was absolutely excruciating. In the end she stopped going due to the huge awkwardness.  Her friends all became too anxious to meet for a walk, family going downhill themselves. I'm extremely grateful that as a tiny family unit we were covid free though. 

It was all over the news yesterday that the government are putting in money to help young people catch up educationally after lockdown. I've just done a few calculations and in the 44 months she's been out of hospital, about half of that she has been out of education because the local authority - health and education- have assessed her needs wrongly and given her the wrong provision- which she has then just not managed the 3 placements shes been in. Because she hasn't managed it, I have had care for, and educate her ( as well as keeping her alive on several occasions) and I had to just turn the news off because I was bloody furious. 

I would love Gavin Williamson to spend a week with us to see what education and health a social care provision looks like for a 19 year old with an EHCP. My daughter has had ALL of the provision in the EHCP provided by us for over a year now. Thats education, therapy, mentoring, help with money and personal hygiene, careers guidance, 1 to 1 , keyworker, mental health nurse-the whole lot. She has payed for her therapy herself with her benefits- this is with a legal ehcp document full of the provision she should be getting . Now I know we have had a global pandemic- but I feel that kids in school and college are being prioritised, and young adults and families like mine are not . Intact local authorities are spending huge amounts of money at tribunal trying to avoid paying for the provision that young adults like mine need. We need help very soon, otherwise my mental health is going to get worse and I am my daughters main carer and we are the ones keeping her out of a very expensive hospital or supported living placement. 

One thing that keeps me going though is the balance and resourcefulness of our little family. My husband and I cycle between being ok and not ok and seem to take turns. My daughter has woken up in a great mood and made me laugh and pulled me out of the pits. The dog continues to be a comfort and a joy to all of us. We have found a clinical psychologist who is excellent and kind and my daughter likes her. We have learned to be self sufficient and any extra help that comes along is a huge bonus- but us expecting it and then it not materialising has done more harm than good for this little family.