Joshua, the Journey and Legacy of Jolly Josh

‘Joshua’s Journey’ is one of love and heartache.  Our son was born in May 2016, healthy and thriving, meeting all milestones.  At four months old we started to see regression in Joshua’s development, aged six months old a scan confirmed that he had experienced ‘extensive brain damage’ to all of the white matter, meaning that he would be severely disabled. 

The idea of #JollyJosh in 2017 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’s legacy.

 

Myself and other families did not have access to #connectsupportthrive with one another, there were no services in place for disabled children/those with #complexmedicalneeds under the age of five, and their families, which would break down the barriers of isolation and promote inclusion. I ask myself, where would families turn to, had Jolly Josh not have been established? Thankfully we are now here, and we will continue to aim to improve services for our families.

 

‘Joshua’s Journey’ is one of love and heartache.  Our son was born in May 2016, healthy and thriving, meeting all milestones.  At four months old we started to see regression in Joshua’s development, aged six months old a scan confirmed that he had experienced ‘extensive brain damage’ to all of the white matter, meaning that he would be severely disabled. 

 

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 from a similar situation.  We knew that Josh’s milestones would differ from other mainstream children. We had been suddenly submerged into a world of Special Needs and Disabilities #SEND and now had 20+ professionals supporting Joshua’s needs, 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 and his sister Sophie to many 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 #feedingtube. 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 now 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 teaching hours to part time, to be with Joshua and attend his many appointments. 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 families. 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 were to create a charity, they 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.’ It was thought that Joshua had a metabolic condition called Mitochondrial Disease (those genetic testing has never found evidence of this) That day in May will forever be in our darkest of nightmares yet one we can not wake from.

 

 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 families, for example the need for public Changing Places, etc. Sophie enjoyed playing with her daughter and I realised that she also would benefit from meeting other #siblingcarers #youngcarers. This also 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 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 with Hamer Learning Community and also timetabled some of the teachers to visit our sessions as the attending professionals to meet our families.

 

Joshua began his #PalliativePathway on the 16th May and passed away a few months later on 27th August 2017.  The details of which, I kept hidden for over two years, however, I began to confront my #grief and post-traumatic stress disorder #ptsd, sharing the details when I presented at the North West Children's Palliative Summit @GMEC_SCN @GM_HSC in February 2019. #CYpEol.  We had provided Joshua with #dignityindeath however he did not receive #dignityafterdeath We reported his death and then had to wait over 9 hours for anyone to attend.  We waited over 11 hours before being able to make the journey 'home' with Joshua's body, from London.  James drove and we travelled (with authorisation) from London to our Children’s Hospice in Chorley with Joshua’s body wrapped in frozen peas as he lay across my knee- this journey demonstrated our desperation to be at our beloved ‘holiday home’ Derian Children’s Hospice. We arrived over 16 hours post Joshua’s death  which also create problems with regards to the condition of his body, and as you can imagine, we now feel a duty to promote positive change in order to prevent other families from experiencing such trauma. 

 #ChildLoss #ChildBereavement

 

 

‘Joshua’s journey to a magical place,

Is a wonderful trip into outer space.

He jumps on a rocket ship and gives us a wave,

Blowing kisses and smiling, he’s so very brave!'

 

As planned, on the 27th September, exactly one month to the date, we opened Jolly Josh. I knew that we had to continue, it was perhaps a distraction, but it became a positive focus. The day was incredible, but Joshua’s physical presence was very much missed, as always!

 

After Joshua passed away in 2017, I volunteered my time to run Jolly Josh, but I also began to volunteer at Rochdale’s Special Needs School, I was intrigued to know what Joshua’s schooling would have looked like.

 

In 2018, Jolly Josh gained registered charitable status! I also returned to work and changed roles, transferring from a mainstream school to special education. Becoming a teacher of primary aged children with Profound and Multiple Leaning Difficulties #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?

 

In November 2019, just two years after the launch of Jolly Josh’s first ever session, our families were invited to a ‘Mystery Meet’ to hear our much awaited announcement. We were incredibly excited to publicise that we now had the keys to our very own venue! This venture was first discussed in September 2019 after celebrating our 2nd Year Anniversary and moved forward swiftly.  We are extremely grateful to Pete and Dan, Directors at PGC and Kerf respectively, for believing in us and sponsoring this venture. 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, we are continuing to welcome more and more sponsors to enable our vision to become reality, and this is ‘Key To Our Success!’

 

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!  This is a prospect and concept which our families have dreamt of, a fully inclusive centre to call ‘home,’ complete with ceiling track hoists, Changing Places to provide dignity whilst toileting, plus a hydrotherapy pool for inclusive swimming and physiotherapy. 

 

As our charity grew, it became clear that our constitution needed to too, therefore in December 2019 we resubmitted our objectives to ensure that we have no limitations in supporting our families, our mission is now to ‘enable families who have a loved one with additional/complex needs, disability and/or profound and multiple learning disabilities to connect, support and thrive.  Jolly Josh aims to inspire inclusion.’

Carole, Joshua's Mummy & Founder of Jolly Josh 

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