Emma tells us about the challenges of transitioning from child to adult services. You can read part one here and part two here.

Well Joshua is now 18 years and 1 month old and so we survived his coming of age and it was a well celebrated birthday. He went to the theatre twice, he went to Donald’s for his actual birthday tea, he enjoyed afternoon tea with friends and he relished a family Sunday lunch with 20 members of his family. It is finally time to take his many birthday cards down and his giant helium 18 has only just collapsed.

So what has changed since he became an adult a month ago?

– The greatest change is that we have now nominated, and had approved, our adult respite provision. We heard last week that Panel had given the go ahead and so we are going to use the Easter school holidays for daytime introductions, before he works up to an overnight stay in May. We have a leaving party to look forward to at his current respite provision next month, during his final weekend, and I will certainly be needing my tissues then. So that is a huge hurdle reached and jumped.

– Joshua has always taken his anti-epileptic medication whole but in yogurt or mousse, so that it is easier to swallow and that practice has never been questioned. Now that he is an adult, we have to get an expensive Doctor’s letter to state that this is acceptable and that we, or the respite carers, are not trying to secretly administer medication against his will. Why should that suddenly become necessary now that he is over 18?

– I have to get used to calling Joshua ‘my young man’ rather than ‘my boy’ and I remind myself to talk about the ‘young people’ at school rather than the children, that is taking some doing but I will get there eventually.

– I am much more focused on the end of Joshua’s school days than I was before. I know that he will be there until July 2020, but that suddenly just seems around the corner to me. I know how quickly the terms fly by so after Easter we will be starting the summer term, so before we know it, it will be the long summer break then he will be back for his final year of school. I was in a Governor’s meeting last week and the head was talking about the 17 leavers next year and I didn’t hear anything after that, as I was so focused on Joshua being one of those leavers. That will impact not just on him but on me too, as I have developed several parent events while at school. I have already warned the coffee morning group that they need to recruit another baker for a year’s time, if the monthly event is to be sustained.

– The Continence Service changed Joshua’s ID code, without informing me, so that I could no longer order his repeat order of continence products as I was using his original ID number that apparently only applied when he was a child! His NHS number, passport number and National Insurance number are with him for life, but in their wisdom, he needed a new adult version for their system, which caused untold confusion and delays. They called up the other day to ask for an assessment at home, with Joshua and ‘his nurse’. I asked who his nurse was, as he has never had any nursing care other than the school nurse or nurses when he was in hospital. She did not know either who his nurse was and went away to find out, but that was several weeks ago and nothing has happened since.

– We have gained an additional social worker, as Continuing Health are funding Joshua’s adult respite and daycare, so we have a social worker from Health as well as Social Services now. We have met once so far, during a meeting at school but she will want an assessment of Joshua too in due course. I am not sure how long they will run in parallel but so long as they are joined up in their thinking and organised in home visits, then two heads should be better than one surely.

– Joshua is now a tall adult in an adult’s body, with facial hair – that he has had since he was 10 to be honest . But behaviour that was sweet and tolerated when he was younger, could be construed as being more threatening or inappropriate now. Joshua is very tactile, he loves to hug and he adores long straight hair, which he likes to stroke and flick. While a toddler stroking your hair might be regarded as being cute, it could be seen as more predatory in an 18 year old. But of course, in his mind, Joshua is still that toddler, just that it is now enclosed in a grown up body! I now think twice about where I take him to change him IF there is no disabled toilet facility, I have always bundled him into the Ladies with me if I am out alone with him, but now that does not always seem to be the best choice, but I am not sure how well Gents are set up as changing facilities.

There are also a few things that have not changed since Joshua turned 18

We have not yet been handed over to the adult neurology consultant or epilepsy nurse, that is due to happen at the end of April. So both will need to get to know Joshua’s history and how he reacts in appointments and we will need to build up confidence in them. Joshua still attends sixth form at the Special School that he has attended for the last 8 years, thankfully he can stay there until he is 19.

Joshua’s needs are completely unchanged: just because he is now considered legally as an adult, he is still virtually non-verbal, still needs personal care and he still has epilepsy. We still love him just as much as when he was a child and we will continue to make decisions on his behalf, in his very best interests. I detest the implication that after 18 years of care, we will suddenly become corrupt and try to spend all his benefits on ourselves and that our best efforts to keep him safe, could be construed as deprivation of his liberty. The onus seems now to be upon us to prove that we have his best interests at heart, where that was presumed to be the case when he was 17 and younger. Joshua is the same individual and we are the same parents, just trying to do our best to give our son the best life that we can.

You can read Emma’s past posts here and on her blog Ups and Downs Mum. If there are any topics you would like her to write about let us know in the comments.