I’ve been trying to comment on this annual phenomenon all week but have simply been too busy being a Carer. So before it’s shoved on the shelf for another year by those who have enough time and energy to celebrate it, perhaps I can make one or two observations? Ask a few straightforward questions?
Why are proper and legal Carer’s assessments so rarely carried out AND delivered on by local authorities?
Will the (delayed) Carer’s Act actually be robust enough to deliver any real change for those in the Carer’s role?
Will proper emergency and future plans be put in place with this Act?
Will adequate respite services be promoted, extended and provided to give every Carer a chance to recharge even once a month?
Everything else is window dressing and insult to a group of people who save the public purse an estimated £10.8 billion per year.
Andy’s period of hibernation from the world has largely continued this week. He has been mostly still confined to his room or on an odd occasion ventured downstairs.
The best it got was a late evening of hyperactivity where he made it into the garden. It was something of a false dawn ( or dusk !) however as he resorted to type the following day. It was a lovely sight though to see him burst into the garden and reconnect with the outside world with excited stims. (See pic!)
One of the problems seems to be the interaction between Andy’s various autistic traits. Like a domino effect the hyper sensitivity to bright light, that confines him to his darkened room, eventually becomes the routine. The need for repetition and rigidity then conspires to make this the ‘ norm’. The same way this rigidity can be utilised in a positive way to reinforce helpful routines around everyday activities e.g. Personal care, it can also trap Andy in less positive situations.
We will keep observing, supporting, loving and encouraging Andy, but it is taking time that the outside world often fails to understand and accept.
As I write today we are nearing the end of a short break in Perthshire. Andy is at respite and has been on my mind on and off. The normal guilt around going away has been dulled somewhat by sheer tiredness and Jen and I have been spelling each other to allow plenty of additional naps.
I had just awoke after another short afternoon snooze and as I made a cuppa I felt a little disoriented. I am a little ashamed to say I was experiencing mixed feelings about coming to the end of our break. Tomorrow life would return to normal and normal has been hard of recent much as I miss my precious boy.
As the lodge was quiet I took my cup of tea through to the television – a novelty to be honest. Today’s day time offering featured Aled Jones hosting a show about a family who had four beautiful girls, one of whom had quite severe disabilities. The other girls and mum were clearly very devoted to their family and specifically their sisters needs. The young woman with the disability had the most beautiful smile and was so clearly happy and secure despite the challenges she faced. As I sipped my tea I realised that the program was actually about a philanthropist who wanted to help the family. Mum explained that her daughter had really benefited from having a loan of a day chair that could be moved and allowed her to relax with her sisters in front on their television or to participate in social occasions. The cost of this essential piece of furniture? Less than £2000 and happily the good soul purchased it for the family. It never helped my conflicted emotions about living with disability though. It felt bittersweet. The family and young woman in particular were clearly delighted but why were these inspiring people having to rely on charity for such an essential piece of equipment? How much would the type of care being provided cost a health authority ? Why was there no state provision for equipment that allowed this young woman a basic human right to ordinary family life?
These feelings drive me to want to keep challenging. As carers we accept life is different in many ways. The desire to ensure the powers that be keep their end of the bargain will always be a struggle. These thoughts I realise have strengthened my resolve and I can’t wait to see my precious boy tomorrow.
Eh not really. Recently Andy’s night time restlessness has returned with a vengeance. He has had real trouble settling over the last few weeks and everyone in the house has been affected. Now Jen and I are well used to surviving on very little sleep but it has been particularly difficult on David who shares a room with his brother. Helen has been affected less but still significantly. She has been later getting to sleep and was extremely distressed one night to be woken by her irate brother who was having a tantrum as he had lost his current object of interest- a wooden spoon of all things. For David he has had to try and sleep through constant switching on and off of the light, Postman Pat dvd on a loop and random sounds from an IPad. All this is interspersed with shouts and prancing round the room by his younger brother. Now this was difficult through the holidays but is frankly not acceptable when David has school next morning. Sunday evening saw David agreeing reluctantly to sleep down stairs on a settee bed in our lounge. Like many autism siblings he has now accepted this compromise and it is starting to become another part of our routine. The first night I sat with David for a while before he went to sleep while Jen was upstairs with Andy. Although not mentioned I think we were both surprised at the quietness and peacefulness that presumably most of us experience prior to going to sleep. As always we have adapted and found a temporary way at least to help us get over this latest problem. For David of course it is not just the sleep situation but also the need for some private space for him and his belongings.This is a need that will increase in years to come and we are hoping to work towards a more permanent solution this year by making alterations to our home.
Andy has struggled recently with intermittent sluggishness and hyperactivity and like many of us will be happier in the brighter days of spring and summer I feel.
On a personal note I had a disappointment this week when I was unsuccessful in an application for a job as an autism advisor. It’s a position I felt I could have filled but I wish whoever was successful well. It’s undoubtedly a role that requires experience and honesty. Those living with autism deserve nothing less.
Monday was a fine dry and sunny afternoon and when David and Helen returned from school I decided to take all of my children out to the park. Jen was making the tea and it would give her sometime to do this. So far so good? Well you might think so but this is how it played out. When we arrived at the park David and Helen got out, but Andy wouldn’t. We gave him a minute to think about it and process his thoughts – still no go. I suggested David and Helen go in to play for a while and I would drive round with Andy but Helen was not keen on this. She is only 6, I suppose. I tried to sit in the car with Andy and watch my other two but he became upset and pushed my hands towards the steering wheel indicating I must drive. I briefly ( very briefly) tried leaving Andy alone in the locked car , having some “down time,” but again this was a non-starter such was his anger. We all got back in the car. Helen was moaning at me because I said we could go to the park. David was giving Helen a hard time for not staying in the park with him. Andy was expressing his displeasure verbally about the interruption to his run I the car. Me? I was feeling like parent of the year. We drove across town with me trying to entertain David and Helen with jokes and funny voices while considering our next move. It was still a nice evening. We could still do something enjoyable as a family.
I drove up to a local beauty spot where Andy usually enjoys walking and exploring. David and Helen got out enthusiastically and wanted to walk around the loch, but once again Andy refused. We all got back in the car. I made a wide sweeping turn to allow Helen to see the swans and their cygnets. I wanted to spend quality time with my children enjoying and exploring. Educating them and talking to them about nature. More disappointment and guilt followed about another missed opportunity. You don’t get the time back you know. Mercifully I have little time to dwell on it as we engaged in the next issue. Andy has been stimming with a ribbon all day and had now put the rear window down and was trailing the ribbon in the wind. He was completely fixated and in his own world watching the ribbon flutter. Inevitably he lost his grip and off it went. More temper and frustration filled the car. I pulled in , checked it was safe and dispatched David to look for Andy’s treasured item. David brought it back to the car where it was snatched from him without thanks or acknowledgment. We tried one last play park on the way home with the same pattern emerging and so we returned home.
Siblings of children with disability put up with much disruption to their lives. In our case this includes sleep deprivation, lack of privacy and space, personal possessions being ruined, financial hardship, lack of opportunities for play and development, limitations to quality time with their parents, stigma of living with disability and daily disappointment as family life revolves around the need’s of their brother.
I’m sure it breaches their Human Rights while we at least still recognise such things in the UK . Surely siblings also deserve services and resources.