Updated: Sep 27, 2019
The idea of ‘Jolly Josh two years ago was ‘pure imagination’. A chain of events would lead me (Founder, Carole Kelly) to realise that there was a huge gap in the system; the solution would become our son Joshua’s legacy.
We have a large, loving, supportive family who were with us every step of Joshua’s journey; we also have a wonderful network of friends yet I still wanted to meet someone ‘living’ a similar situation. At the time we knew that Joshua had suffered from ‘extensive brain damage’, we knew that his ‘milestones’ would differ from other children’s, we had 20+ professionals supporting us, we knew that we were submerged in to a world of ‘special needs’ and that we’d do everything we could to support Joshua to reach his own potential. At this point, we were unaware that Joshua’s condition was ‘life shortening’.
I took Joshua to many baby groups and never met another disabled child or a child with complex medical needs, until finally I met one particular Mummy. Her daughter also had a #NasoGastricTube #NGT, the first child (other than Josh) that I had met with one. I instantly struck up conversation, I had a million questions to ask, I was excited that Josh would know that he wasn’t the only child with a feeding tube. It was then that I realised that what I needed was to meet other families caring for disabled children or those with #complexneeds. (This Mummy comes to Jolly Josh and we remain good friends).
I attended an information day event in #Rochdale for parents and carers of disabled children in 2017. It was a brilliant event with lots of professionals providing information about their services. I had just been granted reduced hours at work, stepping down from full time work to part time, to be with Joshua and attend his many appointments, etc. I visited each stand in the hope to find services that would help Joshua and our circumstances, sadly they were minimal. We already had a play worker, other than this nothing applied to Joshua as he was under 4 years of age. Services seemed to come in to place when children started school and I didn’t want to wait until then to meet other parents/carers in the same situation. I wanted to access as much as I could before then to help Joshua to develop and reach his potential, I also wanted to meet other Mummies. I was left feeling extremely upset and disappointed, that’s most definitely not meant with any disrespect. I knew then that Jolly Josh was going to make an impact.
When I began to vocalise my idea of Jolly Josh #StayandPlay sessions to people who should have, and were in the position empower me, to services that could have assisted me, I was very quickly dismissed. Some made comment about ‘respite’ sessions; I was actually told ‘I never left my child!’ You can imagine my response to that; I had worked full time up until this point. Did this comment mean that are parents/carers of disabled children are expected to abandon careers or have the available finances to stop working? Also, this remark was a huge detriment to the value and importance of respite! Such comments actually only made me more determined to prove that the concept of Jolly Josh would be successful and I became more stubborn in setting out to achieve my goal.
I then approached Joshua’s care team with my idea, his Consultant Paediatrician, his nurses, his Health Visitor etc. and they were all incredibly enthusiastic. They explained that due to confidentiality policies they were not able to connect families together but Jolly Josh would enable this to happen. I asked if they’d consider being trustees if I was to create a charity, they happily agreed and so I began to plan.
Over Easter Joshua’s health began to rapidly decline and in May 2017, just a week after his 1st birthday, we were given the devastating and shocking news that Joshua had ‘weeks if months until he found peace.’ I gave up work immediately and became Joshua’s full time carer, I was now a ‘stay at home’ Mummy to both my babies, though we didn’t stay at home very often, we were out and about making as many memories as possible!
We went on to spend a lot of time at Manchester Children’s Hospital and stayed at Derian House Children’s Hospice on many occasions. During this time I met another Mummy, we discussed the many challenges facing our children, their siblings and our family, for example required yet expensive home improvement changes, the need for public Changing Places, etc. Sophie enjoyed playing with her daughter and I realised that she also would benefit from meeting other ‘young carers.’ This (for me) verified the need for Jolly Josh.
During this time I also focussed on Jolly Josh, I contacted and invited professionals to attend each weekly session and created a timetable for each half term, I thought this to be vital for our success to not only connect families with each other but to connect them with a wide range of professionals, services and other charities. Going to clinic with a poorly child is extremely difficult even for the most confident of people as emotions are heightened, whereas in contrast when the professionals visit families at Jolly Josh they are amongst their peers, the children are entertained playing and the experience is far less formal. In addition, it also provides families with the opportunity to meet professionals which they may not require at present but may need in the future, meaning familiarity.
As a primary school teacher, I planned weekly educational and sensory themed stay and play sessions, I acquired toys, seating aids and resources and created our #themedboxes which we now hire out too, providing extra income for the #charity.
I then broached Mrs Fierro at @SpringsideSchool who was fully supportive of the concept of Jolly Josh, so much so that she gave permission for our sessions to be held at Springside Special School and also timetabled some of the teachers to visit our sessions as the attending professionals to meet our families.
Joshua passed away on 27th August, exactly a month before we were due to open Jolly Josh. I knew that we had to continue, it was perhaps a distraction but it became a positive focus. I planned a very successful Jolly Josh open day on 27th September 2017 which I have many volunteers to thank for! The day was incredible but Joshua’s physical presence was very much missed, as always!
I am incredibly proud of what we have achieved @JollyJosh in such a short space of time. Our moto is #ConnectSupportThrive and we have achieved this over the past two years. Our sessions have been very informative in that our families provide each other with guidance, we have a lovely peer support group; parents are making good relationships, exchanging ideas, concerns and experiences and now even plan outings together which is fantastic. In addition, our children are making friendships and thriving, and their siblings gain support too. Our families also connect and gain support from the wide range of professionals timetabled to visit our sessions. Moreover, children play alongside one another to #inspireinclusion, some questioning, for example, ‘why does that boy have a tube up his nose?’ they learn that we are all different and that’s what makes us special. At Jolly Josh we create an awareness of our children’s differences in a safe and secure environment, hoping to educate the community and promote inclusion.
I have many dreams for the future of Jolly Josh, I am hopeful that we can continue to ‘Connect, Support, Thrive and Inspire Inclusion’ and hopefully develop the services which we offer to further enhance this too.
Thank you so very much for all of your support the past two years. Thank you especially to our families who attend Jolly Josh and make our sessions successful!
We have many people to thank for helping us to celebrate our 2nd Anniversary, as you can see our Pirate themed Family Fun Day 2019 was a huge hit! Recognition and gratitude goes to the following people/services who gave up their time voluntarily to support Jolly Josh...
- Jolly Josh Trustee Janine Parry (Fundraising Manager) and husband Kyle Parry
- Jolly Josh volunteer Event Organiser Sarah Fenton, husband Dean & Sarah's Dad, Barry
- Jolly Josh Trustees
- Family and friends who volunteered their time and efforts
- Nurses and staff from Callaghan House for volunteering on the day and also for use of the building
- Just Imagine North West (Facepainting)
- Ian at Bouncy Castles North West
- Lizzy 'ElizaFreeman_MUA' (Glitter Tattoos)
- Terry from HADOS (DJ and equipment)
- Megan Boswell (Anniversary Jolly Josh logo themed cake)
- Emily and Marie (Pirate ship cake)
- Pat from Little Hens Activities, Milnrow (refreshment donations)
- Jolly Giraffes (soft play vouchers)
- Emma Edwards, Jolly Josh parent (Donations)
- Carolyn Grundy (donations)
- Boyes (craft donation voucher)
- Zoe Reynolds, Heywood Rocks (rock donations)
Thank you also to the Mayor and Mayoress for attending our event, it was wonderful to meet you, more so it was a great opportunity for our families to meet you to discuss our children with disabilities/complex needs and the challenges we face, in addition to how Jolly Josh has 'filled the gap' supporting families in #Rochdale.
It is with great pleasure that I can announce that the celebration also raised a massive £902.22 pounds! We're also overwhelmed by the generosity of Pete and Dan from PCG Demolition Plant Hire and Kerf Developments, who came to the celebration and have kindly stated that they will match the funds raised, therefore the event not only raised awareness of our charity but also £1804.44 pounds!
We are also extremely thankful to Afford-A-Store as we have been gifted a storage unit, this will save Jolly Josh a lot of financial expenditure as we currently have substantial outgoings in order to store our resources and equipment, so this is incredible news!
In 2017 myself and other families did not have access to #connectsupportthrive with each other, there were no services in place for disabled children/those with complex needs under the age of five, and their families, which would break down the barriers of isolation and promote inclusion. This year, 2018-2019 we have had 45 families visit our stay and play sessions, 26 of those disclosed that their child has a form of Special Educational Need/Disability #SEND, I ask myself, where would those families have turned to had Jolly Josh not have been established? Then I remind myself that thankfully we are here and we will continue to aim to improve services for our families.
Thank you so very much for your support!