A Place To Call Home

Updated: Aug 27, 2020

Just two years after the launch of Jolly Josh’s first ever session, our families were today invited to a ‘Mystery Meet’, alongside the Mayor and Mayoress of #Rochdale to be present for our much awaited announcement. We were incredibly excited to publicise that we now have the keys to our own venue! This venture was first discussed in September after celebrating our 2nd Year Anniversary and has moved forward swiftly. The long term goals which we once only dreamed of achieving for our children with disabilities/complex needs/additional needs and those with Profound and Multiple Learning Difficulties #PMLD are now beginning to become reality!

In having our own centre, Jolly Josh will now be able to develop as a #charity, providing more support for families in and around the borough of #Rochdale, enabling them to #ConnectSupportThrive and #InspireInclusion. We will be able to begin to work towards meeting short and long term goals which will benefit our families and for this we are exceptionally grateful!

After Joshua passed away in 2017, I changed roles, transferring from a mainstream school to special education. Becoming a teacher of primary aged children with PMLD gave me great insight into some of the challenges that families faced as disabled children became older. I had experienced life with a disabled baby/toddler with complex needs but this role gave me an insight into what life might have been like as Joshua got older and bigger. I became aware of factors such as not being able to change my child’s pad (nappy) without laying them on a dirty toilet floor because very few establishments have appropriate changing facilities. I also thought about the fact that as a Mummy I would have wanted to have carried Josh everywhere but I now realise that when children get larger and heavier, we sadly must come to terms with the fact that this personal embrace is no longer possible and that a hoist is required. I began to consider the health and safety of parents/carers in moving and handling, if they are to damage their backs in lifting, they can lot care for their child and so we reluctantly begin to accept the idea of such machinery and aids… But where are the facilities with these? Many families cannot venture far from home due to not having the basic right of being able to toilet their child hygienically. The #ChangingPlaces campaign is helping to raise awareness of this. We are exceptionally proud to state that we plan for our new centre to have such a facility, families will be able to toilet their loved one with dignity and ease! In addition our venue will also have a fitted hoist to aid moving and handling.

I also found that many of our families are unable to bath/shower their children due to not having the appropriate home adaptations. This is not acceptable and is very upsetting, especially in that for many of our children bath time is extremely beneficial in terms of relaxation and physiotherapy. Surely, the right to have a shower/bath is paramount for our children’s hygiene alone. Furthermore, we were able to take Joshua swimming in the hydrotherapy pool at Derian Children’s Hospice, in Chorley, a family swim which we were unable to do in the standard public pools due to the cool water temperature etc. Such swims were so special, taken by granted by many and again often unavailable for most of our families. Hence, it is with great pleasure that we also have long term plans for a hydrotherapy pool at the centre; this phase will be opened in due course, during the development of the centre! This will enable our families to enjoy swimming sessions together, being able to witness their loved ones in the water, often when they’re at their most relaxed state.

Our centre’s first and primary phase is to have a ‘Multi-Functional Room’ in which we can provide various sessions, beginning with our current #stayandplay baby and toddler session which has been hugely successful. In 2017, our first year of opening we welcomed 63 families and 23 different professionals to help our families to #ConnectSupportThrive.

We will also be working towards a monthly ‘Sing, Sign, Story Time Session whereby we introduce sign language sessions together with songs and stories.

Our proposals for the future are to introduce many more sessions such as a Youth Group, Music Therapy, Dad’s Den, Sibling Support, Palliative Pals, Counselling, and Charity Collaborations to name but a few.

We plan also to introduce Sensory Stimulation sessions, using modern Augmentative and Alternative Communication #AAC technologies and lights to create a bespoke room for those with #SEND to thrive.

We hope to be able to host parties at our centre, we understand the celebrations of birthdays for those with short life diagnosis and we also recognise that for our children with SEND planning birthday parties can be limited, therefore we hope to be able to offer an appropriate, enjoyable venue.

These plans are at present just ideas, thoughts as to how we can develop our charity to meet the needs of our families, but as a team in 2017, we dared to dream of the concept of Jolly Josh, in just two short years we have proved that this group was needed within our community, though we have only been able to meet the needs of a bespoke few (those with young babies and toddlers). Our dreams of bringing families together, to create a louder, stronger, united voice for our disabled children and our loved ones with PMLD, are becoming a reality. We stand by the famous quote by Hellen Keller, ‘Alone we can do so little, together we can do so much.’

‘Together’ started with a vision, my vision, that I could meet other families who had a disabled child. Professionals struggled to connect me with peers due to confidentiality policies but wanted to overcome this barrier and therefore fully supported Jolly Josh, so much so that some became trustees. ‘Together’ includes my family, in particular my husband James, and friends who supported me whilst I worked tirelessly and sometimes obsessively (but only because I’ve witnessed the great need for change) to make Jolly Josh a success. ‘Together’ takes account of our volunteers who have been crucial to the success of our charity, without Emma, Ann, Sarah (to name a few) we would not have managed the workload. ‘Together’ are those who have been a part of this journey, Mrs Fierro at @Springside School and all those from the Children’s Acute and Ongoing Needs Service, in addition to other professionals who visit and support our sessions. Importantly, ‘Together’ includes all of our supporters, those who raise awareness of our charity and also raise funds, without donations we would not have survived so far, let alone be making this incredible progress. Of course, Jolly Josh would not be a success without our families, those who have taken the brave step in attending first sessions (we realise that this is a very anxious time) and have joined our group, ‘Together’ we are community.

Moving forward with this venture, our very own venue, we are extremely grateful to Pete and Dan, Directors at PGC and Kerf respectively. Words cannot describe how thrilled we are that we have been given this opportunity, the dream of dreams! ‘Together’ have just increased into realms which we once only imagined, with Pete and Dan’s support we are continuing to welcome more and more sponsors to enable our vision to become reality, and this will be ‘Key To Our Success!’

Thank you so much to Danielle Donnelly, our designer, responsible for our logo, poster designs, key designs, fundraiser advertisement designs, to name a few. Thanks also to Graffic Detail for providing our wonderful prints and presentation resources and to Klondike café for providing refreshments, in addition to our homemade bakes (made by my Mum). Todays’ balloons were kindly donated by @perfectballoonscompany and the bunting by @OneStopPromotions, thank you.

Today, we welcomed our families to surprise them with our news, after a week of building up the suspense on our social media, I don’t think that any of them could have predicted such an announcement; this will be life changing for many. It was an unbelievably proud moment!

Local services, businesses,trades and supporters also visited the site with the view to consider supporting the build of our venue, we are overwhelmed with the generosity which we received (a full list will be made public at a later date). However, we are still in need of help! If you feel that you would be able to offer support with the build and development of our venue then please contact Jolly Josh by emailing JollyJosh1@Outlook.com. We especially require assistance with plumbing, plastering, flooring, air conditioning and joinery.

Moreover, this dream vision is going to be costly and therefore we would be extremely grateful of any fundraising or donations, please contact fundraising@JollyJosh.co.uk or make a donation at the click of a button via our website www.JollyJosh.co.uk

We are operating a ‘KEY To Our Success’ Scheme, for more information please view our website.

We hope that you are as thrilled with our JOLLY Announcement as we, and we invite you to support our long term visions to help our community to #ConnectSupportThrive and #InspireIncusion.

Today has been an empowering day for us all, a prospect and concept which our families dreamt of, a fully inclusive centre to call ‘home.’

Today, our grand total of pledged donations stands at £76,330! (I can't actually believe that I've just typed that amount!) We are overwhelmed and at times today I've been lost for words-which is unusual for me! Photographs of individual donations will follow.

'Thank You' just doesn't seem enough, today has been the start of a very special journey, one which we invite you to join us on.

Carole x

#Mummyblog #mumblog #blog #blogger #griefjourney #lifeafterloss #bereavedparents #bereavedmother #griefandloss #family #healing #hope

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