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Updates – Week 3/4 all rolled into one!

Where does time go and how can I get it to slow down?

This week raised some concerns and potential deteriation in Mollys presentation, highlighted these to all concerns and have a psychiatric appointment this coming Thursday. Better to make sure we are all doing everything possible for her. Always knew this wasn’t the end of this journey just the beginning of a new path.

Bec’s came to stay over last night and hopefully soon she will move in permanently – third time lucky for her funding application fingers crossed 🤞 everyone!!

This house is amazing I love it here, couldn’t of wished for anything better we have been so blessed!  Finally got the wardrobe built, thank you Robert 🙏🏻 It is all finally all coming together……

Week three for me was hard, I couldn’t call the house in case I heard anything negative, I just couldn’t of coped, a bit weak of me I know, however I have been conditioned and need to undo so much that has come to pass with this experience.

Let’s keep on keeping on and moving forward.

Week 4 until now 3/4/2019

Molly is settled, she has developed a nice routine that she is coping well with. Concerns over her weight gain due to medication and the longevity of her stay in hospital (not to mention hospital food) so she has joined Slimming World and within the last two weeks she has lost 5lb – well done Molly! Thank goodness for Curly Wurly’s at least she feels like she is having a treat!

I am still covering the informal care until new tenants join her, Bec’s has been approved so she will be able to move in this month and hopefully the third tenant soon after.

I will be having an open day to celebrate this project and to promote ‘taking action’ yourself if you don’t get the support or help you need to achieve independent supported living. Let’s just remember everyone has rights and also a voice.

Can’t recommend New Foundations as a social housing landlord enough! Met our new handy man recently – a lovely guy who has a great understanding of his special need tenants, he was like a breath of fresh air as the saying goes…

Luv C

 

 

 

Mount View Week 2

Beautiful present received for Molly from an old school friend of mine – thank you Catharine Naylor – just perfect!

Managed to get the bath water temperature sorted out but the new remote thermostat is a bugger to control to say the least, sat last night on youtube trying to work it out and I haven’t cracked it yet much to my disappointment.

Another good week to report, transition to staff changes will always be a problem which hopefully will improve in time.  It was also half term which meant Prism Art was not on and Molly likes her routine as we know. Same old, same old if the best way forward in the autistic world, it feels safe.  To be fair she visited the Grace Little centre (Mencap) last week and when I dropped her off this Morning she said she was going to finish her stencilling I was quite impressed, she engaged with staff and other service users and was very happy for me to leave, in fact it was as if she wanted me to go? When I got in the car I smiled to myself feeling like wow this feels good, different but good!

When they are ok then we are too – it’s just a given!

Didn’t get the shelves painted, the staff boards put up or Molly wardrobe built its a full-time job just caring.  I take my hat off to the carers out there! I don’t know how I managed Molly at home full time and working.  I suppose when you have to you have to …..you just do the best you can.

Haven’t really wound down yet but I will and I feel excited at the thought!

So far so good 😊

Take care all luv C x

 

 

’Free Molly’ 18th February 2019 – it’s true!

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Mission accomplished, today was a big day, Mollys section was lifted and she has been officially discharged from hospital. We had a very positive MDT meeting today and all reports exceeded our expectations!

I left Molly at the house this morning after my weekend shift which literally went too quick for me, it’s all been a lot to take in and the build up to this day is hitting home, it’s all too good to be true! Molly has been a star, it’s a huge milestone and hopefully her last upheaval- transition. She can now move forward in hopefully her forever home, I couldn’t ask for anything more.

Mollys CPN will visit tomorrow (within 24 hours of discharge) and she will be monitored by the professionals at a couple more MDT meetings and then her usual reviews. The ward manager said that the staff were all very fond of Molly and that they miss her and wish her every happiness, so lovely to hear!

I will miss Edenwood, don’t know how many times I have walked the Carleton Mile or picked up the litter around the estate (pretending it was her little job) I think the Road on the way up to the clinic had the best Xmas lights in Carlisle last December! I will however still be up there in my new role of Expert by Experience as a panel member on Care and Treatment Reviews.

This is not the end only a new way forward and it is still early days. Will be in touch soon just wanted to share the good news I received today!

Luv C x

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

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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