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.
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?”
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.
I went to Mount View today, it was cold and empty, now the terrifying task of creating a home begins. As I entered each room I tried to imagine my girl living here without me. You may not understand this as I have been fighting for this for so long but I am writing this with tears running down my face and know this is me trying to let go. I can quickly change my thoughts and talk to my self about how I am not leaving her, in reality I can see her when ever I want or she wants – this is going to take some strength to get through but of course I will….
This is an amazing opportunity for the girls, one without the investors would not happen. Just for that moment I was overwhelmed yes that and I imagine other parents in my position would understand – it just suddenly hit me. It did feel wrong to say that but I have to keep this real that’s why I am doing this blog to document the good and the bad and the ugly!
If shopping is really therapy then that’s I will be doing as there is all-sorts needed, maybe I will start by writing a list.
I may need to send out an SOS if any one fancies helping out – you know what they say “many hands make light work”
The house is being worked on by Croft Construction, meetings and more are happening:
- Families met with Social housing landlord
- Visits to Mount View to check out progress
- Electrian (Mollys big brother) doing a grand job and taking direction from the girls….
All sounds great and on track, then we were informed last week (Thursday) that the funding for two of the girls won’t be approved or agreed until their needs have been identified and assessed , three weeks prior to Mollys indicative discharge date!!!!!!!!!!!!!!!!! What a bomb shell…..
Unbelievable, Molly will have to go ahead of the other girls now, not what I want for her – I am devastated! We will carry on and fight for our original plan even though the goal posts have been moved yet again, we cannot give up ever. If ASC could just consider how their previous decision making has contributed to a very expensive stay in hospital and a young person being deprived of their liberty, also they should consider the emotional aspect with stress level soaring!. The longevity of the journey is so very challenging.
Molly is aware of the changes ahead and I am worried even more now and will be until we know and have the funding agreed for the girl to join her.
Anyone setting out or considering the self direct route to supported living should watch out for policy changes which may not give you the power or control to chose the tenants who will live there going forward.
Can you ever really know what is going on inside someone’s head or mind?
Can you ever really help them?
Being transparent if you are able, is maybe for some the first step towards recovery and we have to believe that recovery is possible because it is!
I am in touch with a person who is chronically depressed, this is a subject often hidden and dealt with behind closed doors. I am always actively searching for information of how to ‘be’ in this situation. Everyone wants to give advise but how should we really behave towards a depressive?
In Euston today I saw a book “Reasons to stay alive” I bought it for this person and quickly read it on my journey home – it will hopefully help them and also help me to know how to ‘be’.
- Know you are needed, and appreciated even if it seems you are not
- Never say “pull yourself together” or “cheer up” (tough love doesn’t work) turns out just good old ‘love’ is enough
- Appreciate that this is an illness.
- Things will be said that aren’t meant.
- Educate yourself, understand, above all, that what might seem easy to you, going to the shop, for instance might be an impossible challenge for a depressive.
- Don’t take anything personal
- Be patient
- Meet them where they are
- Relieve any work/life pressure
- Three days in bed – no biggie – there is no standard normal
Where do we start? or should I say ‘they start’ this is ‘their struggle their journey’ but like Molly’s journey we are all intertwined and wether it’s a friend or family member we should take notice of the advice above, it may help…..I have certainly learnt something.
The most common lie “I’m fine”
Luv C x
It may be raining this morning but I see only blue skies, getting the keys to the house on Monday is a huge milestone and the realisation of how human kindness can change your world. Let’s face facts where would Molly be heading without the investors? A matter I can no longer afford to dwell on but one that should be considered, what is happening for others who are waiting for their forever home?
I have been in formed that a local Estate Agent has been asking about the new house ” is it for ‘ bad boys’? Firstly they need to get their facts straight and secondly if it were for the so-called bad boys” where is their Compassion, Support, Respect and Tolerance? Are they discriminating – yes they are. It disappoints me to think that a business in this city could be so small-minded. I do not know who these comments relate to and I don’t want to but let’s not be a small minded city and embrace our differences and support one another.
Nehamiah didn’t build the wall of Jerusalem by himself he had a team. Team Mollywood will continue to make a difference and drive out discrimination and embrace equality and respect which everyone of us deserves! We will continue even after the wall is built!
This week I witnessed equal opportunities and beautiful support first hand while on a visit to Carlisle People First. Great things are happening, just look around and see. Let’s educate the small minded people change their mindset and increase their lack of knowledge and understanding ‘together we are stronger’
Let the blue skies continue and in the mean time put on your wellies pop up you umbrella and keep on keeping on…
Have a great weekend!
This time last year looking after Molly was becoming so increasingly difficult, I have revisited the communication book (diary) tonight and it wasn’t nice to read and remember the onset of the mania and even more upsetting to acknowledge how we were living at that time with little or no support. No wonder I have this fight in me if only to prevent this happening again to Molly who is definitely my ‘WHY’ and the reason I can keep on keeping on……
So close but so far away, the investors exchanged on the house yesterday (4th October 2018) and we will complete on the 15th which is the day the work/alterations will commence. Big shout out to ‘Croft Construction’ in Carlisle who will support this project – so happy they are joining team Mollywood!
Scary but the best way forward for us all. Two lovely girls to share a beautiful home – praying they have a beautiful life there. I know there will be a settling in period and that it won’t be all plain sailing but hey, who knows it may be the best thing ever for everyone!
Well it’s the weekend and I am exhausted so going to rest up before a week full of more meetings:
- Section tribunal
- Expert by experience
Have a good one people!
Luv C x
Today my face is aching from smiling – we have a date for getting the keys to the supported living house and today I have appointed a company to commence the work. I can’t quite believe this happening.
So when ASC said “you find the social housing landlord, you find the other tenants, you appoint a provider or care”, I can say “all of the above has been accomplished” it’s over to you…..let’s get the funding approved please!
I will never take anything for granted, past experiences tell me we haven’t reached the top of the mountain yet but for now I will enjoy this face ache.
Short but sweet – celebrating but keeping on keeping on………
Luv C x
So….I haven’t really known where to start just recently, every day brings either peace or a storm and in no particular order, expected or not expected. After a week of peace and progress I was blown away by the unexpected mood change in Molly, it frightened the life out of me literally. I am made of strong stuff but I am only human and of course we get distracted and unable to focus once again, hoping you can keep it all together and then being surprised by the fact that you can.
Signs of mania trigger flash backs and then thoughts spiral, panic sets in and in no time at all you are back in an impossible place. Raising concerns is a must and then you question “am I over reacting?” Could it be the reduced meds, the mix of patients, the fact she wants out, what oh what is the reasoning for this change? I feel helpless once again.
Meeting last week with commissioners indicated Molly has to be moved on…. but where? The house isn’t ready and I don’t want her to experience another unnecessary transition. Is there a possibility she will come home? Where are Adult social cares plans that should of been running along side mine?- if I hadn’t gone the self directed route what on earth would happen to Molly?
Over the past three weeks on Mondays and Tuesdays I have ploughed ahead finding a social housing landlord and a provider of care, things are moving and I could not have done this working full time so I feel relieved about that decision and happy to be moving in the right direction. I am tired and have had a worrying time but Mollys resilience inspires me to keep on keeping on. She is sitting beside me now as I write and more her self again. I truly believe that the way we react is influenced by and a reflection of the reality of our previous experiences. No-one wants to go back there…..no-one should have to.
Went to the house again this week, it’s a beautiful house and will help three young girls to live independently with support and I can’t wait for the day they can move in! Potential date for exchange week commencing 8th October – exciting…..
Mount View Wigton Road here we come……..
Perseverance is not giving up. It is persistence and tenacity, the effort required to do something and keep doing it till the end, even if it is hard.