The idea of #JollyJosh months ago was ‘pure imagination’. A chain of events would lead me to realise that there was a gap in the system; the solution would become 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 met one particular Mummy at a baby class that I took Sophie and Joshua to. Her daughter also had an #NG, 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 up his nose. Now, this Mummy comes to #JollyJosh and we have become friends.
I attended an 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, stepping down from full time work to part time, to be with Joshua and attend 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 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 the notion was very misunderstood. Some thought of it as a ‘#respite’ session, I was actually told ‘I never left my child.’ You can imagine my response to that; I had worked full time up until very recently. Did this comment mean that are parents/carers of disabled children are expected to abandon careers or have the finances to stop working? Also, this remark was a huge detriment to the value and importance of respite. In addition I was told it was believed that children of preschool age were at home with their parents, mine hadn't been, I worked. Yet now that I worked part time did that mean I was to stay indoors, hidden, adding to the #isolation of having a child with #complexneeds? #Anxiety
I approached Joshua’s care team, his Consultant #Peadiatrician, his nurses, his Health Visitor etc. and they were all incredibly enthusiastic. I asked if they’d consider being trustees if I was to create a #charity, they happily agreed.
Over Easter Joshua’s health began to rapidly decline and in May 2017 we were given the devastating news that Josh's prognosis was #terminal, he had ‘weeks if months until he found peace.’ I gave up work 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 @ManchesterChildrensHospital and stayed at @DerianHouseChildrensHospice on many occasions. During this time I met another Mummy, we discussed the many challenges facing our children, their #siblingcarers and our family, for example required yet expensive home improvement changes, the need for public #ChangingPlaces, etc. Sophie enjoyed playing with her daughter and I realised that she also would benefit from meeting other ‘#youngcarers.’ This (for me) verified the need for Jolly Josh.
During this time I also focused on Jolly Josh, I planned a timetable of professionals to attend each week, I planned weekly educational and sensory themed sessions, I acquired toys, seating aids and resources. I broached Mrs Fierro at @SpringsideSchool who was fully supportive of the concept of Jolly Josh, so much so that she gained permission for our sessions to be held at Springside School.
Joshua passed away on 27th August (7 months ago), 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 open day which I had many volunteers to thank for! The day was incredible but Joshua’s physical presence was very much missed.
Today ‘Jolly Josh’ has now reached its ‘6 month birthday’. I am incredibly proud of what we have achieved in such a short space of time. Our sessions have been very informative, a wide range of professionals have provided advice to parents/carers. We have worked closely with Springside School to introduce children who will be future pupils. We have set up a lovely peer support group; parents are making good relationships, exchanging ideas, concerns and experiences. In addition, our children are making friendships and thriving, their siblings gaining support too. Also, children play alongside one another, inclusively, some questioning, for example, ‘why does that boy have a tube up his nose?’ and learning children are all different and that’s what makes them all special. We are creating an awareness of our children’s differences in a safe and secure environment, hoping to educate the community and promote inclusion.
Thank you so very much for all of your support the past 6 months. Thank you especially to those who attend Jolly Josh and make the sessions successful!