Check Up

Joshua had a check up at the dentist yesterday before school and he was badly behaved in the waiting room : he refused to sit and wait, but was trying to get into the surgeries where all the action was. He kept pulling my glasses off and throwing them across the room. I took him to the toilet with me to pass the time  ,as unusually we were early, but as soon as we were inside the disabled cubicle, he began to kick first the metal heater which made a great sound of vibration and then the wooden door. So he was being quite a thug. When we returned to the waiting room I found us a seat around the corner from other patients, and I hooked my arm inside his and I sang to him to settle him down and made him laugh by blowing raspberries. Soon enough we were called through to the  special needs dentist, who knows him pretty well.

I was surprised that he cooperated enough to lie in the dentists chair and I held his hand down and she was able to see his teeth and gums. While we have been brushing with an electric brush, it is still hit and miss as to how thorough we can be as he will only tolerate it in his mouth for so long. She said that while his teeth had improved, his gums still looked sore and that he should also have his gums cleaned with a softer brush. She demonstrated and made his poor gums bleed, but he tolerated the procedure. He messed about again at reception as I made an appointment for another check up in three months time.

The dentist is not far from school so I delivered him there in about 5 minutes and he lead me to the stairs that lead to 6th form, there was no doubt that he knew where he was going. He rushed into his classroom making a grand entrance , shouting “I like you” and hugging his TA. He was clearly happy to be there and both pupils and staff seemed pleased to see him too, which I loved. I put his belongings in his locker and said goodbye, but he was busy squeezing his TA so perhaps did not hear me. When he realised that I was going, he chased after me to see “Bye Bye” and give me a hug too.

As I drove back to work, I followed a car with a bumper sticker on saying ‘ My child has autism’ on it and some smaller print beneath it that I needed to get closer to read. I was intrigued as to why you might want to tell other drivers that your child had autism and wondered if it was because the driver or child might show irratic behaviour perhaps. At a junction I got close enough to read the smaller text which said ” My child has autism – Questions are welcome but parenting advice is not!”, which I have never seen before. So this driver must have been bombarded with well-intentioned advice and had finally had enough. But I am not sure how welcome questions about autism might really be as you are struggling perhaps to encourage your anxious child back into your car!

I thought back to Joshua’s behaviour in the dentist waiting room and how nobody had made any comment, the odd stare perhaps, and a few sympathetic looks, but I am struggling now to think of a time when I have been given unwanted parenting advice. Perhaps that is because children with autism can look more ‘normal’ than Joshua – sorry I hate to use the word normal – and so they can simply appear to be naughty. But Joshua with his splints and built up boots perhaps looks as though he has special needs and certainly his learning difficulties are clear once he speaks, so that is perhaps I have been spared that advice and instead I have frequently received the head on one side, sympathetic smile, the pat on the arm or am told ‘well done’, all of which drive me mad but I have learnt to smile graciously,even though I am inwardly snarling.

Strange Sunday

Joshua was very clingy to me all day yesterday; he followed me around all day and he hovered in the kitchen while I cooked, hooking his arm around my neck. All day long he was hardly out of my sight. I wonder if he too was re-living the horrors of last weekend in his mind? Or if he felt odd, perhaps with seizure activity in his brain, and did not want to be alone? But something was definitely different to usual, when he comes and goes from his den.

We made our weekly trip to the local supermarket together, when I allow, and encourage him, to push the trolley for me. He enjoys that but he is a pretty wild driver and the trouble starts when I want to stop at an aisle and select something for the trolley. It is impossible to hesitate, browse and choose which version to buy, it has to be a snap decision that is hurled in the trolley as he flies by! Normally he is happy to sit on the seats while I pack the bags, but not yesterday : he was adamant that he was going to push the trolley out of the shop for me, so I had to pack with one arm and hold the trolley back with the other. Although the man at the till could see I was challenged, it is maybe the first time that I have not been asked if I want any help with my packing! I think he was enjoying the battle of wills in front of him too much.

Despite his unusual behaviour, Joshua communicated beautifully on several occasions with me yesterday : after I had unpacked the shopping at home, he came in to survey the kitchen. He then grabbed a bag of newly purchased satsumas and brought them to me, clearly indicating what he fancied to eat. After tea, we were sitting on the settee watching TV, we had enjoyed an early bath, and he simply came in,sat down next to me and said ” Bed!”, well you can’t get any clearer than that. I hugged him and off we went upstairs, even though it was only 8pm – he had had a busy day after all. He took his bedtime medication and I tucked him in, and as I leaned in to give him a good night kiss, he piped up with “Bye Bye”. What a brilliant way to end a full-on Joshua-filled day!

Dining Out

Eating out has always been  a fun thing to do, before we had Joshua it was a treat night out or a fun way to enjoy family celebrations like birthdays. But when Joshua was younger, dining out rather lost its appeal as it became hard work. He would be noisy and disruptive and he was difficult to keep in his seat as he wanted to find, then stand under the loud speakers to listen to the background music. So we were less keen on meals in restaurants as family parties, they were not relaxing, with one or other of us having to take Joshua out for a walk mid-way through as a distraction, while waiting for the food to arrive.

I laughed out loud at the birthday party depicted in ‘There She Goes’ as it was so familiar to me, apart from Joshua has never tried to remove his clothes to sit in his underwear! But the confusion of the waitress and the pitying looks from fellow diners were very familiar and the desperation to do anything to keep your child quiet, at any cost, so as not to draw too much attention to him, have all been a familiar experience and could only be written by someone who has personal experience of such an ordeal.

Joshua now enjoys the sociability of eating out, and he loves meeting new waitresses and trying to gain their attention.  although his eating can be hit and miss in that environment – apart from ‘Donald’s’ – in that he may either eat everything or nothing. I have finally learnt to have the ipad in my bag, ready for when he gets too restless and often Shrek or Madagascar will keep him calm and quiet and stop him from trying to leave the table. We have to choose our restaurants carefully as we would feel uncomfortable in somewhere too quiet or too smart, that would simply  be asking for trouble and drawing attention to ourselves. Our simple aim, when we are dining out with Joshua,  is to enjoy delicious food without drawing too much attention to ourselves and to get out again, in reasonable time, relatively unscathed.

Dining out on respite weekends and on rare nights out is a treasured  treat;  we are able to linger more over the meal and can choose restaurants that would not appeal to Joshua , either due to the nature of the food – so we can enjoy spicy Indian food for instance – or perhaps an unsuitable environment – such as upstairs seating or somewhere too posh ,full of diners out for a romantic meal for two. what is for sure is that, dining out , without Joshua, is about much more than simply eating.

Life changing

Having a child with special needs changes your outlook totally, in my experience, nothing is ever the same again. Our experience of life is simply different from ‘mainstream families’, perhaps a more exaggerrated version? All parents worry about their children, of course they do, but the types of worries are different : I do not worry about Joshua making friends particularly, what career choices he might make or his academic school record. Last week Joshua was given a certificate of achievement and it was for following his peers to the next activity without prompting! That would be taken for granted for a normal young child, but it was something to be celebrated for us. We learn to enjoy our victories whenever they arise and try to allow them to compensate for some of the tougher times, so as to sustain us.

I am on ‘red alert’ almost all of the time: even if my eyes are not on Joshua, which they mostly are, then my ears are pricked for unusual noises from upstairs It is hard to distinguish the noise of a 9 stone teenager falling to the floor in a seizure from the more rhythmic sound of that same teenager emptying his bookshelf in his bedroom onto the floor until you have heard both sounds several times as I have now learnt to recognise both and to ignore one. Even when Joshua is not with us, when he is in respite or at school, my mobile phone is always close by and I am always ready for that call. Joshua is at his respite provision this weekend and sadly, due to the 999 call and hospital admission last stay, it has dinted my confidence and now I am half -expecting it again. We will need some incident-free weekends for that nervous feeling to disappear.

I enjoyed another episode of “There she Goes” yesterday and their family birthday meal out with autistic Rosie, was so familiar to me and made me laugh out loud. So simple family traditions, such as a birthday, are not the same when you have a child with special needs, as it became about her even though it was her older brother’s birthday party. They had to move tables as she was too disruptive and they even brought dough balls from another restaaurant to keep her quiet. The waitress was clearly nonplussed as to how to handle this dysfunctional family. We have had numerous family meals when we have taken turns at walking Joshua around outside or taken him to wash his hands to distract him or to calm him down. Thankfully these days he is better than he once was and he enjoys eating out and I usally take the trusty ipad along with me too, as back up. But the prospect of a long lesiurely family meal in a restaurant is often a daunting prospect even now.

There are so many ways in which I, or my life, has changed since Joshua came on the scene and the impact is permanent I would say. I can’t go back to yesterday, because I was a different person then. I should also say that not all of the changes are negative ones : I am much more aware and tolerant of differences than I once was and I certainly do not fret about things that really do not matter anymore, like having a tidy house – what is the point when I pick up the cushions that Joshua has thrown on the floor a thousand times a day. I recognise and even seek out, kind people and I no longer waste my time on those who are not good for my mental health. I have made so many new friends as a result of having Joshua, who help me daily to get through, and I am very grateful for that and for them.

When people told me that having a baby would change my life, even they did not realise by quite how much I am sure.

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.