Appreciating – ’recognise the full worth of’
I am appreciating so much today:
Mollys improvement being consistent, the caring staff at Edenwood, the great support plan in place for Molly’s dental treatment tomorrow and lovely comments of support from dear friends.
Tomorrow Molly will have a general anesthetic and it has been planned for her to arrive at the back door of the theatre, first in with not waiting around for her…. how good is that!. Planning is key and she is so prepared I feel confident it will all go well thanks to Sally the dentist and the staff at Edenwood.
I have a campaigning heart but I also like to recognise and appreciate the good things when they are happening. A little appreciation goes along way in my book.
As Molly is becoming well she is now calling people by there correct names, I was tonight “Mam” not “Claire”and “Iron Man”was today known by his real name too. There are some names I can’t mention as they are unrepeatable to say the least – it’s hard to believe what a poorly mind can think or say at times. Little steps feel HUGE I am hoping the longer it takes to get there will mean sustained stability of this mood disorder.
In the words of ‘First Aid Kit’ – Show me my silver lining.
Gotta keep on going, looking straight out on the road
Can’t worry ’bout what’s behind you or what’s coming for you further up the road
I try not to hold on to what is gone, I try to do right what is wrong
I try to keep on keeping on
Yeah I just keep on keeping on….,
Luv C x
I sometimes feel lonely on this journey, I looked up loneliness and it said – not having friends or company. I have had company all weekend so far and I know I have lots of beautiful friends so I can’t be lonely…. I have therefore concluded that ‘missing’ is more descriptive at this time. Yes, something is missing…..
Missing feels terrible like you are living without feeling joy.
Why does Molly never ask to come home? I wonder if she misses too? I know she wants “everything back to normal and a routine back” I think we are both in transition and we can’t go back so we just keep on keeping on.
This blog is about Molly but as I assume like with many other families there is a rippling effect which touches and affects relationships and sometimes sadly destroys them. Someone once said “we can only do the best with what we’ve got at that time”. If we always try to do the best we can with good intentions then hopefully time can undo some of the misunderstandings. Having a child with special needs can leave you with little time for others or oneself.
Little things like letting you hold her for a moment, seeing her smile or hearing her hearty laugh do make everything worthwhile and bring joy.
Joy – ‘a feeling of great pleasure and happiness’
Tomorrow is another day let’s make it a joyful one!
Luv C x
The recent MDT meeting gave an indicative date for discharge, we are now working towards the 1st October this year. Possibly sooner if we get the supported living set up as I feel she is definitely on the right road to recovery. This makes my heart sing – she is calm, happy and responding very appropriately.
Keep hopeful and believe all things work for the good in the end. I know I said I dare to hope but we have to in order to keep moving forward.
Last year I met someone who gave me a prophetic word he said “a hurricane is coming” at the time I didn’t believe things could get any worse but the Mania took over our lives like a tsunami. The challenges we face in life can only make us stronger and there is always calm after a storm.
Next steps now are to get Molly to access some familiar activities within the community, I am excited for her, I hate drugs but if they stabilize her then I don’t see another option right now. She is in good hands and believes she is in a new college so that’s what we run with. No need to correct her, best just to agree for now.
I met Molly’s Mental Health Advocate this week from Carlisle Mind – great to have him on the Mollywood team. Mollywood is a reference our family have used for years and use when Molly goes into her own world, the world of our Molly’s autistic mind – welcome to Mollywood!
I have attended so many meeting over the years I have lost count and to be honest many were futile. I was recently invited to tell Molly’s story in a Lessons Learnt Review for the NHS, this for me was acknowledgment that this story would be heard and listened to with potentially an opportunity to improve systems within departments that in my opinion had previously failed Molly. I am her voice and her expert yet my concerns and opinions around Molly’s future were often dismissed or determined by funding availability, I believe inadequate support, inappropriate services and lack of transitional planning have all ultimately contributed to her mental health issues.
I have raised two complaints with Adult Social Care, one was upheld and the other partially upheld, it is uncomfortable, time-consuming and distressing but it has to be done. If we don’t address our issues things will never change. Likewise it is important to recognise good practice and appreciate good services – it’s not all bad out there we need to work together collaboratively and change things for the better. Vulnerable young people like Molly have to depend on others and for that reason for me, they matter more!
On Friday I attended a conference in Gosforth Newcastle ‘World Health Innovation Summit’ (WHIS) http://www.worldhealthinnovationsummit.com – amazing speakers working together to inspire and support communities.
Tomorrow I will attend Molly’s MDT meeting, I am about to prepare my list of questions and I am looking forward to receiving a detailed update.
On the 1st of June I will be meeting with investors to look at purchasing a property which will hopefully become Molly’s forever home and one she can share with two other young people. Watch this space….
Today I visited ‘Aspire’ 17 a new venture offering respite provision for young adults with learning difficulties Croft House and Cottages in Appleby Cumbria. So happy to see their vision accomplished a massive achievement with a fantastic purpose!
As Mental Health Week 2018 comes to a close I hope all the hard work people are doing helps raise awareness of this important matter, that their message reassures us that there is help and support out there and that they are not alone.
Isn’t it just ironic that when you say ‘she is settling’ that you then see something that tells you she is not. As a parent and carer you have an inbuilt sensor that reads the triggers and signs of the lows and the highs of bipolar disorder. These periods can go on for months and as Molly was showing signs of a mania back in November I dare to hope that what I saw tonight was just a blip and she is actually on the road to recovery. The symptoms of bipolar disorder vary from person to person and can take a long time to diagnose. Molly was diagnosed initially when she was 16 but then after a period in an assessment hospital in Prudhoe this diagnosis was taken away and Autism was confirmed. After a couple of year of cycling between episodes of depression and mania Molly was once again diagnosed with bipolar, this time the manic period resulted in her being sectioned in January. Molly’s section was changed from a 2 to a 3 which means she can now be detained for up to 6 months.
Experts by experience are people who have personal experience of using or caring for someone who uses health, mental health and/or social care services. If you would like to become an expert by experience contact the Quality Care Commission (CQC) you could play a crucial part in raising standards, I intend to.
I went to bed last night and wondered if I should be blogging at all, I felt uncomfortable and questioned why I felt this way. I was checking out my ‘Why’ and after watching Bryan Stevenson on YouTube I understood my ‘Why’ …… I want to do what ever it takes to stand up for vulnerable young people and be a voice that represents justice and fairness. I encourage you to listen to Bryan’s speech right to the end and hope you will be inspired to get uncomfortable.
I visited Molly tonight after work and she was reasonably ok – it is a slow road to recovery after a manic period however I see her settling which is very promising.
On the 4th January 2018 my daughter was detained in hospital under the Mental Health Act 1983 Under a section 2. To be placed under a Section 2 an application has to be made by an Approved Mental Health Professional (AMP) and you must also be seen by two other separate doctors, I later was made aware that this section can detain you for up to 28 days.
Molly was actually sectioned initially on the 2nd January however at that time there were no beds in the Country. A bed in Liverpool was potentially an option however it was quickly filled and no longer available. That night I sat in the kitchen with the three professionals who completed the paperwork to detain Molly however she couldn’t go anywhere without the offer of a bed, it was now 10pm and so Molly remained at home they left. We had to go through the process again on the 4th January which resulted in a bed being found out of County in a private hospital over in the North East.
It was an ordeal to say the least for myself and my family and more importantly Molly who surpassed all my expectations on the afternoon of the 4th when after some persuasion she walked voluntarily into the ambulance. Three members of staff from the local hospital team were there to support her admission and to ensure she arrived safely, I felt some reassurance that at least she had a familiar face her CPN who travelled with her in the ambulance.
The silence when she left was both deafening and unbearable, I smothered myself under a blanket on the sofa and couldn’t move for hours. The true realisation and the impact of this event didn’t sink in initially, it arrived slowly but surely over the next few days – how on earth did it come to this?
The CPN called that evening and told me she had arrived and settled as well as could be expected. I felt ‘proud’ a strange word for this situation but I really felt so proud of Molly she never ceases to amaze me and show how life’s difficulties can often demonstrate resilience.
#hellomynameisclaireprince and I am launching this blog to document my journey as a mother of a daughter with Learning Difficulties, Autism and Bipolar Disorder. I want to raise awareness and give support to others by sharing my experience and to let you follow our pursuit for the next step – supported living. The launch of this blog ties in with the fact that it is Mental Health Awareness week 14-20 May 2018.