Shop til you Drop

I read on social media that yesterday was ‘Purple Tuesday’, when shops on the high street would be ‘autism and dementia friendly’ – there would be an hour  during the day when these types of customers would be made particularly welcome, like the autism friendly cinema screenings that I have seen advertised too, but we have never participated in. But I have a few issues about Purple Tuesday :

  • It was not well advertised or promoted, so how many shops participated and how many families were aware of this ‘golden hour’ for their Christmas shopping, presumably? I certainly fell over it in the evening, when it was too late, so hard did retailers try to promote this service that they were offering. I still do not know when the magical hour was, but presumably it was when Joshua’s peers who might have benefitted, were at school.
  •  How much shopping can realistically be achieved in an hour, when you have dementia or autism? I have seen both conditions at close quarters and both can become preoccupied with a very small detail and get stuck in a loop, so much so that it can take an hour just to get over a threshold. Does this really exist as an hour a year for shopping in a quiet, helpful environment? Surely if they are serious about helping,and it is more than just a retail gimmick, it needs to be offered as a weekly or monthly hour, to gather some momentum.
  • I understand that for some on the autistic spectrum and for certain dementia suffereres, the busy-ness and noise of shops is simply too overwhelming and that they cannot cope with more than five minutes in that environment. For them,and their carers, this would be an appealing concept perhaps. But this idea also makes me uncomfortable if I am honest : here is your hour for shopping, now stay away from the shops the rest of the time, as we gave you an hour. It could also be interpreted as a patronising attempt at segregation and you know that I feel stronly about inclusion.I want Joshua to be part of the real world, it is good for him to mix with ‘normal’ people and it is good for them to encounter him too, so I do not like the principle of offering a Disability Retail Hour for our situation. Joshua hates shopping, not due to the crowds and noise I don’t think – he loves people – but he just finds it boring and if I am honest, I dislike shopping too, so thank goodness for online shopping!
  • If I assume that the founders of Purple Tuesday’s motives were purely to support the needs of sufferers of dementia and autism, then I applaude their initiative and perhaps it will grow in popularity as more people become aware of it. But I hope that the staff in participating stores were given training in how to support customers with dementia or autism , as to be done properly, it would need to offer more than just  a less busy retail environment.

I will watch out for more such initiatives, but for us, this did not represent a solution to encourage Joshua to spend more time shopping. He has his own funds and if there is something that he wants or needs, then he will get it. But I will usually make an online purchase for him. A special disability hour is not magically going to make Joshua into an independent shopper.

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Stepping Out

Joshua is communicating in a variety of ways lately and one is with his large feet; he has big feet anyway, same as his dad’s, but then he has NHS splints and built up black leather boots on top of them so they are even larger. They are actually not as heavy as they look but even so Joshua has bulky feet and he votes with them, often.

As soon as Joshua comes home from school, he sits on the settee and sticks his feet out ready to get his boots and splints off. They must be horrid to wear all day, particularly in the summer when the plastic splints must sweat. But his boots are useful for communicating with too: I wrote last week that we heard his door kicking during a meeting in school last week but he also used the same  approach to tell me that he was ready to go out on saturday morning, with an insistent and determined kick to our front door, once he was dressed and ready. I was told off last Tuesday when his meal was not ready on time, he came into the kitchen to inspect proress with cooking, then gave me a couple of kicks to the ankles to express his disapointment, as it was not the service that he receives when yorkshire Grandma meets him from school! If he does not want to walk somewhere, then he plants his feet solidly on the ground and somehow manages not to be moveable, that is a very effective objection too.

Joshua also uses his feet as a tool for entertainment, by sticking a foot out at the last minute to trip you up as you walk past him. That is a deliberate and hilarious joke for Joshua, as he loves some slap stick humour.He does it subtly so that at first you do not realise that he is tripping you up, you think that it is your fault, so he is sneaky with it. Joshua’s feet are also part of his bedtime routine too : after his bath,he will sit on the side of his bed in his pyjamas and hold his feet out one by one. I massage moisturiser into them and give him a foot rub and do his leg stretches, to loosen his tight hamstrings. He relaxes during this process and his eyes go dreamy, so it is a great precursor to bed.

So Joshua’s feet play an important role in his life and he uses them in many different ways. I am going to try to get him some chiropody so that we take better care of them too, although I am not sure how he would respond to that, we will see……

A Chance meeting

I manage to have special needs conversations in all kinds of situations: On Friday morning I went to a cafe for an early lunch with my sister and we chose an M&S cafe. We sat down with our food at a table for 4 as the tables for two looked pretty cramped, where we began eating and talking. We had finished our soup and toastie when a young mum, with her two year old daughter, asked to sit at our table, as it was getting busier in there.

We engaged in some small talk, laughing that the toddler had tucked into her chocolate lollipop before she had even considered her egg sandwich. My sister then went to use the facilities before we left and the Mum explained that her toddler was realtively easy to look after, as she slept through, but that she was really struggling with her autistic son. With little encouragement she went on to tell me that he was in mainstream junior school and was coping with the work but that he had no social skills or friends and that she was worrying how he would cope at high school.

Of course I told her that Joshua went to a local special school and we talked about how that experience might help her son further down the line and that he might be able to cope with  1 to 1 support in mainstream. Our conversation was not long, it ended when my sister returned to the table and we began to put our coats on to leave. The toddler bid us goodbye and the Mum told me her name. I suspect that I will never see that mother again but I hope that she has gone away slightly reassured and perhaps feeling less lonely in her experience.

I have always made myself available for these chance conversations with strangers and I enjoy them  too.  The most memorable one for me was when Joshua was in hospital , starting the ketogenic diet, so he was not ill at the time but needed close supervision for a few days to ensure that he did not react to the extreme change in nutrition. While I was there one night I went to the parent room, where a mother was alone and crying. Of course I had to ask if she was ok, if she needed anything? She explained that her baby had just been diagnosed with brain damage and she did not know how she was going to cope. While I made us a hot drink, I told her about Joshua’s birth and diagnosis 9 years earlier and how much he had achieved since then. She stopped crying  and listened, asking a few questions. The next day I brought Joshua to see this mother to introduce my son, proudly and she commented on how happy he seemed. Joshua enabled her to picture a future that she could not see beforehand.

Now I have  no idea what outcome either mother did, or will, get and I may have given both of them false hope, but for a moment I was able to use our experience to offer reassurance to get both through a difficult moment in their lives. When I was alone in SCBU after I had been told Joshua’s scan results and diagnosis, at 4 days old, I would have given anything to have met someone like me 17 years on, to help me to imagine a future that was something other than a frightening black hole. So I feel that is the least that I can do for other parents who might be struggling.

A Friendly Day

I had 5 hours all to myself yesterday, which is rare and I made the most of it. As soon as I had waved Joshua off in the car with his Direct Payments worker, I grabbed my coat and went out. I went shopping to our nearest market town, where I was able to wander in and out of shops of my choice, freely. I collected some DVDs that I had had transferred off VHS videos – our wedding tape from 1995 and lots of footage of baby Joshua. I have not yet dared to look, as  I am expecting some of them to be emotional as neither of our fathers are alive anymore and little fat toddler Joshua, with his young, hopeful parents, will be quite a sight too. I try not to wallow in the past too much, rather to look forwards but there are times when I need to wallow and I wanted these images to be digitally preserved.

We often take Joshua to this market town at weekends so it felt odd to be there without him or his dad. I even found myself drawn to the impressive buskers, thinking how much Joshua would enjoy their music. I deliberately went into shops that he would not tolerate or that were not accessible, just because I could.

After browsing, I then went to my friend’s boutique where we had a perfect combination of each up dating each other on events in our lives and of me trying on clothes. We gossiped and we giggled and I had a lovely afternoon. sharing with someone who understands our struggles due to her having an autistic son. The last time I went to her shop, I had Joshua in tow and we lasted ten minutes as he was throwing cushions and pulling clothes off the racks, so this was a much more fun, relaxing experience.

The time flew by in her shop, so much so that I was only home ten minutes before Joshua arrived back from his outing. He had been out in sea air and so, soon after arriving home, he enjoyed an apple then we snuggled on the settee, while tea was cooking. A couple of hours later, friends arrived for an evening meal. Joshua said hello then retreated to the Den, but he did keep coming out to see what he was missing and he joined us, with encouragement, for homemade lasagne.

So I spent my Saturday with good friends, both with and without Joshua and I really felt as though I made the most of my DP weekend break too. I had got Joshua ready , with his boots on, early and he spent the ten minutes waiting time, at the front door, kicking it, ready to go out – which he has never done at home before. I tried distracting him but he was very clearly communicating what he wanted and when she arrived, he dashed out of the door towards the car, giggling. So that arrangement is clearly working for him now, no more shyness with her, which is lovely to see. Today I plan to visit another friend for lunch, so we will see how cooperative he is there, although we have not yet decided where we will eat, but she has already suggested ‘Donalds’ to make Joshua happy! Lets see how it goes, I am hoping that we can go somewhere nicer but it is good to know that we have it as a back-up plan to employ if necessary. So bring on friendly day, part 2…….

A problem shared……

The second mental health session at school went really well yesterday and there was a unianimous vote that it should continue as a termly event, so I was delighted. Ten adults attended, including some new faces since the first one in July. I had  researched about anxiety, as that seemed to be a widely experienced problem amongst the group. I was impressed by how openly the parents there talked about their own personal experiences and we described the group as a “safe place” where they were free to raise whatever they wanted. Nobody had any answers, although I presented what MIND had listed as strategies that might help with anxiety, but this was about sharing and feeling comfortable to speak out ,rather than having any solutions. I had two lovely thank yous by the time I got home, which confirmed that we had achieved something worthwhile yesterday afternoon and they certainly made me smile.

Being the parent of a child with special needs is an isolating and exhausting experience, and so it was unusual to set time aside to talk about how we were feeling as parents. One attendee commented that it was good that it was all about me today, not my child. That is rare as the child’s needs come first and we spend so long battling for health appointments for our children, that often our own health can become compromised and certainly takes a  back seat .I only have Joshua in our family and so he can have my full parenting attention, but several of the parents there, have several children, and even more than one child with special needs, to take care of, so it is no wonder that there is no time to also consider and protect their own mental health.

So there is a need there, if only as a sharing, talking shop and so with that in mind, I am more than happy to host another session in the spring term and I really hope that it will grow and grow.

Learn to Surf

I have been carrying out some research into mental health issues amongst parents of children with special educational needs, as I am hosting an event later today in school about Anxiety. I read about the high incidence of  depression and anxiety amongst those who are parenting children with learning difficulties, both from a scientific perspective and from the personal experience of professionals, who have an insight due to their own family situation. Everyone agreed with what I have witnessed in my own life, that the likelihood of suffering a mental health problem is certainly exacerbated by the presence of a more challenged child in the family : the constant worry, the sleep deprivation, the constant need to fight for services and assistance, the unpredicatability of life and the need to be alert 24/7 must all contribute towards damaging the mental health of SEN parents.

I went on to read about strategies that might help to ease our mental health. One writer’s advice that jumped out at me, was to surround yourself with other SEN parents and she described the effect of this as ” taking a deep breath, after holding my breath for so long”. These parents who inhabit my world, understand the pressures that we are all under, we support each other when we are in need and laugh with each other when things are going well.  That is the support network that I am trying to create through our monthly parent coffee mornings at school. While each of our children are individuals and all have a different diagnosis, we share much in common. Joshua is not on the autistic spectrum, and many of the parents at his school are dealing with at least one child in the family with autism, but we can still share and empathise with each other. Joshua had seizures and required rescue medication I recall during the first Mental Health session that I ran in July, and it gave many of the parents there an insight into what it means to have a child with uncontrolled epilepsy.

There can be no downsides to sharing and talking to each other, while enjoying some home-baking, and if we learn something useful about mental health today while doing that, then that would be a bonus. Being a sufferer is nothing to be ashamed about, in fact in many ways, for us it is a fairly inevitable consequence of living the lives as SEN parents that we do. I hope that these informal gatherings can be a useful event every term at school and that we can begin to lose the stigma of admitting that we struggle with our own mental health – ” you can’t stop the waves, but you can learn to surf”

Meeting of Minds

We had a difficult meeting yesterday afternoon, held at school. It was the start of an application for Continuing Healthcare, which as far as Joshua is concerned, if he meets the criteria, means that Health would have to contribute to his Care Budget when he is 18, whereas social services fund his respite at the moment. So this was a meeting to explore just how demanding Joshua’s health needs are. There are 9 ‘domains’ which he has to be ranked on, for example breathing, behaviour, altered states of consciousness, cognition etc. The meeting was almost three hours long as we painstakingly worked through each domain to build up a case. So the discussion was very negative, focussing on what he cannot do and what difficulties he has, which I am not comfortable with, as my outlook is really about celebrating his small successes. But for the sake of this funding debate, we were not encouraged to celebrate anything.

In order to redress the balance, I kept throwing in Joshua’s recent developments : the fact , for example, that he now pulls on his apron on the back of the kitchen door, to indicate that he is hungry, so he uses an object of reference to communicate. It is hard to hear a list of his difficulties, when he has been making some strides over the last 6 months. Although I know why we were having the meeting, but I still felt disloyal to Joshua and felt the need to protect his reputation in that meeting. The discussion highlighted several differences between my husband and I in the way that we regard Joshua’s care and how he behaves these days. At one point I cried, that is not unusual let me say, but I had been holding it togther but when I talked about how much he loved coming home and how he reacts when he sees me, I wept.

This meting was held in school and throughout the meeting we could hear ryhthmic thuds. After a while, his teaching assistant, who was representing education in the meeting, asked us  ‘Do you know who that is?’ and it became clear that Joshua was kicking the door of 6th form! This was not a tap, he was making the wall to our meeting room tremble. She went to see him and for the time being at least, he stopped kicking the door and she said that he had been grinning while he was doing it. I wonder if at some level he knew we were next door talking about him and I wish now that we had invited him in, albeit briefly, to say hello. The lady from Continuing Health was making statements and claims about Joshua, having observed him for a few minutes only in class. If he had come into the meeting he would have given us hugs and then he would have thrown some papers around and generally created chaos,and then he would need to have been removed! But at least the professionals would have been reminded of the young man that we were discussing and he might even have demonstrated some of the issues and strengths that we had raised with her and to be honest, his presence there would have been welcome relief.

In the end, they concluded that Joshua is complex and that he has a severe health need, that will be the recommendation that will be put forward to panel. To be honest, we knew that  at the outset. I am not really sure why we needed to be there, the professionals could have discussed him without our input, we are not even going to see her submission before it goes to panel. The meeting left my husband angry and frustrated and it left me rather sad and unsettled. But then we got home later and he gave me a giant bear hug and we sat on the settee together, cuddling,and I instantly felt better.