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Acceptance

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Well it’s Saturday night I took over from Mencap this morning, to see Molly for the first time since last Sunday was exciting to say the least! She was fine, it’s all quite unbelievable she is accepting that this is her home. She is one lucky girl and what my friends have done for us both is actually priceless!

I am sitting here in this beautiful house while Molly sleeps thinking dreams really can come true!

A great team are in place to support Molly going forward and I have such gratitude to all the staff in Edenwood who have been Molly’s and my family for the past thirteen months, they have played a huge part in her recovery and I will always be grateful for their support and care for Molly. I am adjusting to going straight home after work instead of going to the hospital and it’s pretty weird.

Week 1 – I am actually lost for words!

I am hopeful, happy and very very proud.

Luv C x

Big day!

This is Mental

Just a quick update from me, last minute crisis forgot to get the washing machine plumbed. I took a hire van back this morning (was collecting more things for the house yesterday) only killed a pheasant on the way and had feathers everywhere and a broken grill! That aside met with Mencap to go over Mollys care plan – all ship shape so this is it ….and we’re off!!!

Cleaned out cupboards all afternoon keeping busy busy – don’t want to think about it all but of course I just can’t switch off! Update revealed she wont take her coat off, she is resisting oh dear…..only to be expected I suppose, so hard for special needs people but lots of TLC and Hot chocolate will help I am sure.

I feel like I want to run to her but I can’t. We have to get passed this, I will see…

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SAS who dares wins

Thursday pm

Do you watch this programme? I am addicted to it, these recruits are unbelievable physically and mentally!

I am not physically fit but I am mentally, I know this is so because of all the challenges I have faced fighting for and caring for my daughter Molly. Life is very different for carers, not better not worse just very different. I have said this before “you almost have to surrender your own life” it just becomes your way of life which has been forever normal to you.

Discharge is imminent – this Monday coming – I don’t know how it will go but whatever happens we will deal with it at the time, I only live in the moment that I am in now, there is no room to think ahead although saying that I am very organised and prepared I have tried to imagine what the house needs from the point of view of the girls and the staff.

Yesterday a friend of my sons fitted a new sink, two radiators and sorted the settings for the water even cleaned a fire and got it working for us. No charge for his time – he said he wanted to support this cause. How amazing is that, such a gentleman and so generous!! Craig thank you from the bottom of my heart! 💜 (you are an Angel) – Dark Rum it is then!

Three days to go…………………

Just want to say big a thank you to Stephen Prince (Molly’s dad) for all his hard work and to my son Rob who completed the electrical work today supported by Mark his work colleague. In between all this Robs baby son River Lucas Prince 💙 was born on 26th of last month, little brother for Hallie 💖 and cousin to Caleb 💙 well done Lauren and Rob!

It’s all happening in Mollywood!

Watch this space there is more to come!! praying for a smooth transition 🙏🏻.

Luv C x

Big day!

Just a quick update from me, last minute crisis forgot to get the washing machine plumbed. I took a hire van back this morning (was collecting more things for the house yesterday) only killed a pheasant on the way and had feathers everywhere and a broken grill! That aside met with Mencap to go over Mollys care plan – all ship shape so this is it ….and we’re off!!!

Cleaned out cupboards all afternoon keeping busy busy – don’t want to think about it all but of course I just can’t switch off!  Update revealed she wont take her coat off, she is resisting oh dear…..only to be expected I suppose, so hard for special needs people but lots of TLC and Hot chocolate will help I am sure.

I feel like I want to run to her but I can’t. We have to get passed this, I will see her at the weekend.

Will keep you posted.

Luv C x

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

Realistically speaking….

Let’s be realistic the journey for any parent of a ‘special needs’ child is never going to end it’s a life long commitment and that’s fine, my commitment to Molly will only ever end when I take my last breath.

Life going forward and after the section is lifted will be different, I am very hopeful it will better for the both of us.

When she asks to go back to college (the ward) I now have to say to myself ” that’s ok Claire” this is about how she is getting used to living apart from me.

With the funding now approved by ASC, YES APPROVED on Friday gone and her discharge date being 28th January 2019, I have to accept she will most certainly be moving on in the new year.

I am currently following ‘finding Cooper’s voice’ written by the mother of a severely autistic non-verbal child. She talks and writes about her 7 year old son Cooper openly, honestly and with such truth about life and how her family cope. Coopers mum is amazing and I most definitely feel she is helping many who find themselves living with or caring for a person on the spectrum. I recommend her to you all out there. I am a bit further down the line as Molly is now 22 but I totally relate to her anxieties, joy and her total commitment !

Christmas isn’t an easy time for some, last year was a really tough one but this year we will be celebrating, I got a new grandson last week Caleb James, he is an absolute blessing and I hope the joy he brings will knit my family back together again!

My biggest hope for next year is that Molly’s transition goes as smoothly as possible. The house is getting ready and the staff are being trained and will soon be working with Molly. It is important that the staff who will be working at Mount View build good relationships with the girls and to help support them all when they move into their new home.

Fingers crossed everyone!

Realistically speaking I can see light and I dare myself to actually say “it feels ok”.

Perseverance and hard work will prevail.

 

 

Luv C

Edenwood

Edenwood is a unit for mentally ill people with learning difficulties. I have been going there almost every day for 10 months, the staff work so hard supporting their patients 365 days a year! I see the shift changes, when the go in and when they go out, after a challenging and tiring day or night.

We often complain about the NHS, however tonight I want to say they are super hero’s! I notice their dedication and sometimes when there are issues or disturbances it’s hard to leave Molly, I have to trust she is safe and understand that every patient is at different stages of their recovery and that they are all part of someone’s family.

This whole experience has changed me, it has made me more tolerant and to have acceptance of the fact that how we deal with difficult situations and control our emotions is so important. Just breath really deep again and again – it works!

Carers need taken care of in order to care.

Life is rubbish sometimes and the challenges can either make you or break you but I appreciate them all up there tonight and think “what would we do without them, who could take over and deal with situations when we cannot?”

C x

17th November 2018 and counting……

The pervious two posts have sat as drafts as I have been hesitant to sometimes publish the truth.

The truth is suppose to set you free so here goes……

The emails bouncing around are so unsettling the battle between organisations are so unproductive and only reinforce my belief that it seems impossible to achieve an positive outcome (the dream).

Free Molly for Christmas!!

Her hours of care and funding has not been approved, the other girls needs and packages seem to be up in the air. ASC are questioning Molly’s 1-1 hours – trying to reduce them and wanting more shared care. The battle continues meanwhile Molly remains under section.

It all feels like a huge test, I feel the system is against me. I sent an email yesterday and copied in all the important people and in summary stated there must be someone with the power and authority to get everyone to work collaboratively to see this through for the good of the girls in question.

Through it all Molly is settled and coping for now.