Slow down…….

The discharge has been postponed, met with professionals yesterday to discuss Mollys current presentation which is deteriorating due to the commencement of the transition plan. If funding had come in sooner we could of maybe prevented this delay.

I agree with this decision Molly is feeling scared she feels safe on Edenwood after all she has been there over twelve months. We went from one meeting straight into the managers panel meeting this panel has the power to over rule the section decision if needs be.

This next couple of weeks are going to be difficult for both of us, deep inside I know we have to make this work as I can no longer do this. I will cover the informal hours needed but not long term, I can’t believe I am saying this but a time comes when you have to let go and look after yourself in order to be able to go on and still fight your child’s battles.

One of the panel members said “we are in ore of what you have done” I was so shocked and moved at the same time – I am a different person because of this experience and right now I don’t know who I am or how I feel I just know “the show must go on” and believe that what’s to come it’s going to be great!

Sometimes we fall into the “sad” place it just happens but it’s all about how we go on and keep a healthy attitude, not easy I can tell you……

Luv C x

D day approaches

Well this is a tough one, to try and explain where we are in relation to the move is not as easy as I would of liked it to be:

  • The house is getting there, the re-wire is almost complete
  • In need of more furniture but got enough to get started
  • Funding only agreed for Molly at present so she will move in alone initially
  • Informal care I need to give equates to 36 hours plus 3 sleeps per week!
  • ASC’s get out clause is always – “well you are taking the self directed route” but no one I know believes that their decisions are fair, realistic or right
  • Sleepless nights with worry that feels like a real physical pain and which only subsides once I am asleep
  • Transition is started to unsettle Molly, she is showing signs of stress and this concerns me
  • Wish I could fast forward in time I am not looking forward to this next few weeks
  • I am so grateful for this opportunity and to set up this supported living venture, it is for the best long term but the emotional cost is only just bearable!

Molly is resisting and I must ignore her behaviours, not cave in, be strong, focused and driven! Not easy, I will do what I need to do, no pain no gain – one day at a time……..as they say

Right now I like to sleep and forget about it all, tomorrow I will be working at the house, one week before discharge date we are almost there. I think it will be tough to begin with but in the end will work for the good of all involved.

Praying for the best transition possible and that Mollys resilience get her to where she needs to be, to feel safe and to be treat with compassion and dignity!

Luv C x

4th January 2019

One year on…….

Tomorrow will be exactly one year to the day that my daughter Molly was sectioned.  ‘Time doesn’t fly’ as they say, it feels exactly like 365 days, believe me it really does!

Molly is so ready for her discharge date of 28th January 2019 and the house is almost ready, there is so much to think about when you are setting up a new home from scratch, every day I think of something else she may need.  Most of all I want her to be lovingly cared for and to have friends, laugh and hopefully love her new life.

Twelve months in hospital has affected me let alone Molly, I wonder how she feels or what she is thinking – that is something I will never know, I can only observe and make second guesses – one of the down sides of being on the spectrum is being socially awkward and unable to express your emotions.  I am always looking out for signs and trying to read from her behaviours how she is coping with all of this.

Transition will commence next Monday the 7th January 2019.  Molly will meet the new staff employed to work in the house. They will work with the staff on Edenwood and myself to help inform and guide them as much as possible to understand and care for Molly in the best way possible. This time is crucial and Molly will need as much love and support to help her adjust to her new forever home.  I have everything crossed and will do whatever I can to help create her best life!

The dream and goal will be accomplished,  the journey has not been easy.  I have presented Molly’s story to a ‘Lessons Learnt Review’ panel, written complaints to ASC, fought the battles that have presented themselves along the way and I will continue to do so.  I hope this blog will encourage parents to ‘keep on keeping on’ and fight for the rights of our special children and young people.

I will continue to write and let you know how the move goes, this is only the beginning.  Happy to help others who need support or advice – please spread the word and contact me by email: cprince2106@gmail.com

Happy Birthday for tomorrow Lisa, I will always remember the 4th January forever more!

Special thanks to Catherine and Jeremy, Jean and Arthur, Lisa, Chesterholme in Hexham, Edenwood at Carleton Clinic and my family who have all been on this journey with us. Your support cannot be measured!

Luv Claire & Molly x