Changed Identity

Joshua never did master toilet training; We began to make some progress when he was four years old and he used the toilet a couple of times, when there was much celebration. At the time, he loved to blow out candles and so that was his reward if he successfully used the toilet. My Mum even sent him a well done card on one occasion, after we called her to share our good news!  Sadly at the same age, epilepsy took hold of him and we had to begin to medicate him as his seizures became much worse, so toileting took  a back seat and has never reappeared on the agenda.

When you are incontinent, you are allocated four nappies/pads per day and sufficient to last you three months are delivered to you at home for free. I had a battle with the Continence service several years ago, when they tried to change Joshua’s continence products to cheaper Tena versions, which were not adequate for him and we had a full year of having to try alternative products, to prove that they leaked or were not absorbent enough, before we were allowed to have our usual brand and range. It was a very frustrating time and involved endless meetings and reviews, before eventually they agreed that we could maintain our more expensive products and these have remained unchallenged since that battle was won. However I did have a call last month, warning me that Joshua had been handed over to Adults and they may wish to review his products in due course.

There is an automated telephone number that you ring to activate your order, armed with a unique ID number, so that we are not wasteful and you cannot activate your order any sooner than they have calculated that you should. Around two weeks ago I realised that my stocks were running low and I tried to place an order but it was not accepted as I was too early. So I have been calling this automated phone line for the last week and it kept telling me that his ID number was not recognised. It was only yesterday that I was able to call in office hours to find out what was going on by speaking to a human being. As I was on hold, I suddenly thought that it would probably be an issue created by his 18th birthday.

When I finally got through, the lady explained that his previous ID number had been ” closed down” and he had been allocated a new adult one, and that was why I could not place an order! I asked if I was just supposed to guess that it had changed and what the new digits might be?? I was livid as I had wasted so much time and I was by yesterday on my last products, yet she told me that delivery would not be made until Monday then asked if that was OK. I explained that it was not OK :  that I only had one more day’s supply and that I had not been given any new ID number to use. I questioned the logic of a new ID number, explaining that Joshua’s needs had not changed even though he had turned 18 and that he had not been allocated a new NHS number on this anniversary . She was unapologetic and stated that Monday was the earliest that delivery could be made and told me that ” this is just the way that things are done in Adults” . She was unmoved when I told her that I would now need to make an online order and that I would have to pay for next day delivery. I placed that order for a pack of his daytime and a pack of his night-time products, with the next day delivery option, and it came to £30, so this would be a massive expense if I was expected to fund them every month.

With that realisation, I  will be grateful now to receive the 3 month delivery next week. But not for the first time, I recognised that the processes around the changeover from Children’s to Adults were poor and I felt that I could do a better job myself.

Transition Trauma

Joshua will be 18 next spring and so we are beginning the transition process, from child to adult, which already seems to be a minefield, even though we have the much-valued support of his Adult social worker. We have already had difficulties with Joshua’s finances : I could not release some childrens savings bonds that Granny had given him, as they were in his name and so he needed to sign the form to redeem them and to access his cash. I explained that Joshua could not read a form or sign his name and I was told that he should not have received these bonds unless he had capacity to understand the concepts of interest accrual etc. I calmly explained that when my mother gave him his first bond when he was born, nobody knew what his capacity for understanding  might be. In the end, only when I involved a solicitor to ask questions on our behalf, as I was too exasperated, did common sense prevail and the savings were released to Joshua, via my bank account, on the strict understanding  that I only use the funds for his benefit! They are buying him an off-road wheelchair so I am confident that I have not abused his savings by treating myself!

The second time when it became an issue was with respect to his benefits when his Disability Living Allowance became Personal Independence Payment and the DWP insisted on writing to my son…Dear Mr C….. I called them immediately and explained about his mental capacity and told them that I would be acting on his behalf, reading and signing any letters and forms. They accepted my explanation, or so I thought, as the week after Mr C received another letter asking if he was happy for me to become his appointee!! So another phone call to explain that Mr C would not be able to read or sign their form and they apologised… The week after, another letter to Mr C asking that they met with him and his potential appointee to assess my worthiness! Faced with such automated letters and lack of common sense, it is very difficult to hold it together. a young girl from DWP came to school last year, we met in reception, she tried to engage Joshua in conversation and immediately realised hs lack of capacity and asked me to sign a form and then I was made his appointee!

I guess we have to jump through these hoops because of the abuse that some disabled young people have received but what happened to ‘innocent until proved guilty’? In all of his 17.5 years of life, we , as his parents, have never done anything that was not in his best interests, based on the available information at the time. Now up until 18 years old, we have that right as his parents but once he is 18 years old next year, he is an adult and therefore he has the right, not the capacity but the right, to make his own decisions. We have explored, with a solicitor at our own cost, whether we should be applying for Power of Attorney for Joshua but as he does not have mental capacity to sign that power over to us, and never has had, it is not appropriate.

It seems that the next year is going to be challenging, that everything that we have learned up to now about being the parents of a child with special needs now becomes irrelevant as he will become an adult. The law no longer recognises our parental authority, even though he has the cognitive abitity of a toddler, and so I can see some grim battles up ahead where we will be arguing on the side of commons sense and we will be tripped up by the law and the inflexibility of organisations like the Department of Work & Pensions. I come back to a question that I ask most days, is life not hard enough with a son with special needs without this additional obstacles thrown in our way. I have written about feeling as though I am walking along a tightrope before: well, now all sorts of new weapons are being thrown at me as Joshua’s 18th birthday approaches, trying to knock me off balance. What should be an exciting milestone birthday, will be a landmark and the start of a new chapter in our lives as Joshua’s parents. Wish me luck!

The Sleeping Lioness

Most mothers would tell you that they will do anything to protect their children, it is a natural instinct that arrives when they are born. You see this helpless little baby and you know that you will do whatever you can to make sure that it has the best care possible and nobody can get in the way of that protective instinct.

If that feeling applies to mothers of ‘normal’ children, just imagine how much stronger that feeling is when you are told that your baby is extra vulnerable, that he has brain damage and may not walk, talk, see or hear?  You realise that ,at 4 days old,  your son will need your protection for the rest of his, or your, life, whichever ends first. This mother/son relationship will not be like most others: Joshua will never leave home and live independently, he will never bring his new fiancee home to meet his parents or produce grandchildren and he will never be in a position to look after his elderly parents as they become more vulnerable too.

So, in that context, perhaps it is understandable just how hard we mothers fight for our children and it is , in my experience recently, a daily battle just so that Joshua can have his basic human rights. I should not have to fight to ensure that he is safe when transported to and from school, I should not have to complain to ensure that he gets the nappies that he needs to keep him comfortable overnight and I should not have to request that he  experiences a full school day…….

I have often heard that a mother can turn ferocious, like a lioness, in defence of her offspring and I certainly recognise that determind, protective fight in myself. Joshua does not have the verbal ability to speak up for himself and so, as his Mum, it is my duty to be his voice and to try to understand what Joshua would ask for , if only he could.

Joshua will turn 18 next March and so then it is all change again, as he will be considered as an adult : so his current respite provision, which we love so dearly, will end abruptly from his 18th birthday and so we are looking for adult alternatives. So far,we have not been successful in our local area, so it seems likely that he will have to continue to travel some distance to access that decent provision. Thankfully he can stay at his current 6th form until he is 19, but once respite is resolved, we then need to start to review his day care options. My Husband and I are visiting a solicitor this afternoon to discuss Power of Attorney over Joshua as it will no longer be sufficient that we are his parents, once Joshua is 18. We will not be able to make any decisions for him, even though his cognitive ability is that of an 18 month old, the law recognises that it will be 18 years since he was born. He has already been asked by DWP to sign forms that he cannot read and had his bank account frozen until he can prove that he has capacity to make a withdrawal. Why, just because he is 18, will we , as his parents, suddenly stop making decisions in his best interests? It makes no common sense at all.

So we will have to learn some whole new words and processes for our adult son, now that we have finally got him into the best school and the best respite, it will be all change again. It seems that there is little continuity from Children’s to Adult services, so we are having to tell professionals all about our son, as though he will change from the 17 year old that lives with us today to another man on his 18th birthday. Fortunately this lioness is ready to roar and pounce.

In or Out?

So today is the day when we vote about our future in Europe and it is time for us to have some democratic say in where our direction might come from. The MPs and campaigners have been very passionate on the debates that I have heard, passionate that cliams have exaggerated and so it as been difficult to extract the truth of both sides. But I have reached my decision and I will be casting my vote.

Of course, inevitably, I turn my mind to Joshua and I have not seen a disability argument for either ‘in’ or ‘out’. When Joshua is 18, he will still not have the capacity to vote but that is the least of my worries for his adult life to be fair. I try not to think about adult-Joshua to be perfectly honest as it is a frightening prospect. I do not like to think much about the days when he is a fully grown adult – can he get much taller?? – and as we are getting older and weaker. I no longer lift him much at his 9 stone weight, but I regularly take his full weight after seizures as I lower him to the ground or help him negotiate accessing vehicles-Joshua in you go. Fortunately, he has gained weight gradually and so I have been able to build up my strength in proportion to his size. But the days when even my husband could scoop him up and give him a fireman’s lift on his shoulder, are gone now.

We are being encouraged to consider Joshua’s ‘transition’ into his adult life at school already, even though he is 15 and he can go to their 6th form until he is 19. I know already that budgets for Adult Services have been drastically cut but I am still hoping that by the time he has reached that age, that he will be able to access some daily daycare that gives him the same routine as school, where he can get involved in fun activities with his peers but return home to us. Joshua will never drive or live independently, so he is going to have a life of being dependent and of being taken care of. I am more than happy to take care of him for as long as I am able but that will take its toll and we will have to be mindful, when the time comes, that his parents might not always represent the best option for him…

So perhaps you can see why I am voting for Joshua’s future, but that his inability to vote in his own right, is not the biggest concern that I have.