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.