Dear Diary

I wrote yesterday morning that Joshua’s home/school diary told me that he had hit and kicked staff and that I was disappointed to read that news. I had a phone call yesterday afternoon from the member of staff who had written in the diary, she rang me to apologise for the negative diary entry. I replied that there was no need to apologise, if that is what the day had been like, then I had appreciated her honesty. She explained that she had not been with Joshua on Monday and she was relaying what other staff had told her, but that he had not behaved that way all day and that he had had good times too. She had re-read what she had written the previous day and had felt bad enough to call me, but I reassured her that there was no need.

The home/school diary is a lifeline at a special school, where you do not have the school gates experience for daily updates from staff and other parents. This is particularly true when your child is non-verbal and cannot explain about his day or answer any questions satisfactorily. I have volunteered in Joshua’s school and so I know how busy and unpredictable the days can be. So I can appreciate that finding the time to write something meaningful in ten diaries, will take  precious time out of the classroom. So I am always grateful for any insight into Joshua’s day that I can glean from the diary . It is always the first thing that I do when I get home from work, after greeting Joshua, to assess how his day has been and I am disappointed if it has not been completed.

In return, I always aim to write something in it too, reporting on what kind of weekend or night he has had, including perhaps how well he as slept or eaten. How can I expect to get any information from school if I do not return the favour? The diary should be a two-way street for communication between home and school, though I am aware that I only have one son that I am writing about, whereas teachers have a whole class’s diaries to complete, which must be challenging.

There are other more high tech means of sharing information – via email or an App for instance – but I still prefer, the old fashioned hand-written note in a diary, as it seems more personal and I have the whole year’s book to refer to at a later date, I have kept all of Joshua’s home/school diaries from his special school years, as they are a useful reminder of the various stages that he has been through in his life. This hitting, vocal  teenager is unrecognisable from the sleepy, quiet boy who never made it through the school day without at least one nap and was a passive presence in the classroom, and I have a hard copy record of it to keep forever. So, thank goodness for the Home/School diary and long may it continue.


I Your’s

Mostly last week while away together, Joshua said ‘I like you’ as his favourite phrase and it was hard to get him to say much else, although we did have occasional mentions of ‘Joshie’. But when we got home and I was removing his bulky boots, he said my favourite phrase of his : he stared into my eyes and he uttered ” I yours” and my heart swelled, ‘ Oh yes I agreed, you are mine’ and I gave him a big squeeze and I have not heard him say it again since, so it was deliberate choice to say that then, and not random repitition. I have taken it to mean that he knows where and to whom he belongs and that is very special, in a world where we are really not sure what precisely he knows and understands.

We have always maintained that he understands so much more than he can express and he demonstrates that, daily. He had taken to going to the back of the kitchen door and pulling at his apron hanging on a hook there, to indicate that he is hungry as he wears that at mealtimes. He holds his feet out, on demand, to have his socks put on in the morning and to have his boots removed when he comes home from school. I had warned him that it was back to school yesterday, his first full day there for over two weeks, and he raced outside to board the taxi on coming downstairs, without  a backward glance.

So he undertstands much of what we mean but I do not understand all of what is going on in his head. He will have been delighted to see everyone at school again, but instead of positivity in his home/school diary, I read with sadness that he had “hit and kicked two members of staff today”, so something was not right with my gentle giant. I am not sure how to respond to that news : do I apologise? try to explain the inexplicable? Make excuses for him? I am really not sure. I would normally say that he hits out – and he does smack me occasionally – to gain attention, but the diary says that this was not the case. I love to read that he is happy at school but this diary entry suggests that all was not right yesterday and I am trying to second-guess what he was trying to communicate in this behaviour. I am hoping that it was a one -off and that he moves back to his high-5s or hugs or onto something else next, as he knows that hitting and kicking is not acceptable.

Home is where the Heart is

We arrived home from our holiday around 5pm yesterday, so we just missed arriving in the daylight. Joshua was excited from when he recognised the roads 20 minutes away and he kept pointing up ahead, as though he was navigating and directing the driver. By the time we turned up our lane, he was bouncing in his seat, shouting ‘I like you’ excitedly. I was carrrying bags into the house , when he got himself out of the truck – my husband had undone his seat belt – and ran into the house, he could not wait a moment longer. He then went from room to room, checking all was well. It was very cold at home as we have run out of oil while we were away, so luckily we have a log burning stove which soon made the snug cosy and generated enough hot water for a bath. Room inspections over, Joshua grabbed at his apron hanging on the back of the kitchen door, indicating that he was hungry – despite a stop at Donalds en route home! So I set about making an evening meal.

While I love my home, coming back to it after a holiday is always tough as it indicates back to the normal routine for me : back to work, back to school, washing machine on, meals to prepare with less eating out, meetings about Joshua to attend…..That is all suspended while we are away on holiday together – except that I had some work to do and the washing machine ran everyday! But it implies that family fun is over and back to the grindstone, so apparently I was grumpy yesterday while packing up! It is just a period of adjustment, that is all. I know that in the weekend after next, while Joshua is in respite, we have a long weekend at Center Parcs booked, so I do not have to wait long to get back into holiday mode. I also know that Christmas will be here in the blink of an eye, as the end of October half term always indicates that countdown. We are fortunate that our offices close from 21 December through to the new year, so I will soon be on another break, almost having school holidays. So I really have no need to feel sorry for myself and I know that once I have adjusted, I will be fine again, I just did not share Joshua’s innocent delightand unadulterated joy at being home again.

And now, the end is near….

So today is the last day of our October half term holiday and tomorrow it is back to work and school. As I reflect back on the week we have spent together I see that :

  • We definitely made the right decision to go away nearer home and we have enjoyed our holiday in the countryside rather than at the coast. It is always hard to return home after a week away, but I am relieved to be facing a 2.5 hour drive home , rather than 7 hours in the car.
  • Despite some illness, we have enjoyed our stay and have got out and about everyday but one. I am sure that Joshua has recovered faster as a result of that day of quarantine. We have often had to separate in order to enjoy the things that we wanted to do, if it did not suit Joshua. For instance, we had planned to attend a local bonfire last night, but it was cold and raining and Joshua was contented at home, so my husband went to watch the fireworks without us and brought back some great photgraphs. Most days on the way home from an outing, one or other of us have taken the dogs on a walk at dusk. Although this is far from ideal, it is often simpler than involving a reluctant Joshua ,who is such a home-bird and would react badly to a detour.
  • Joshua’s new off-road wheelchair/trike was a good buy, as it came into its own on the walks that we took together this week. Joshua has looked super-comfortable and it has been much easier to push through grass and mud than his standard wheelchair ever would have been. I even pushed him up hill on yesterday’s river walk, just to see if I could manage it, and while I had to stop halfway for a rest, I did make it and without too much huffing and puffing!
  • I have been more aware of Joshua using bad behaviour to communicate when he is not enjoying an activity: he behaved appallingly in a walkng shop, throwing merchandise across the store, and he got what he wanted, I hurried up with my hat decision and we left quickly. It was clearly a protest against shopping as he was an angel in the pub, immediately afterwards, while waiting for lunch  smiling, hugging and sitting quietly. When he is impatient in the wheelchair, he has developed a stamp on the footplates, to indicate ‘hurry up lets get going’ which is also pretty effective
  • Joshua knows what he does and does not want to eat and if he is not in the mood for a particular dish, even if it is one of his favourites, then he will not entertain it. On two evenings, I offered him fish dishes that ordinarily he would enjoy , but he simply spat them both out and went upsatairs to his bedroom. On the first occasion, as he had eaten a decent lunch, I let it go and simply offered him weetabix for supper which he enjoyed. But on the other day, he had not really eaten much all day and we had been late offering him his evening meal. So when he rejected his fish, I relented and quickly offered him beans on toast instead and he ate that with real relish, showing that he was actually hungry, just did not approve of my first menu.
  • Our puppy Kevin is a key member of the family already and nothing made that more apparent than when he went missing yesterday and my husband and I searched anxiously for him. We had come to the conclusion that he must have got spooked and run away or had been stolen, when he peeped out, totally unaware of the search-party, from under a bed, where he had been fast asleep.

I will be sad to go back home later today and I will miss being with all of my family this week, after being in each others’ pockets, but I know that if we were together all  of the time, then this half term holiday would not be as special as it was.

Puppy Love

Joshua loves our dogs and he has even taken our new puppy, Kevin, to his heart already. We had a wonderful afternoon out at an arborteum yesterday and he had a black dog on each side of his wheelchair, trotting alongside him. As we admired the golden autumn colours, he woud occasionally reach down on his left hand side and stroke the head or ears of Ruby, very gently. We found an area thick in fallen crispy leaves and my husband showered the dogs in leaves, which really made Joshua giggle. He reached out to join in, so my husband passed him giant handfuls of leaves so that he could thrown them up in the air over Kevin. Joshua loved this game and did not want it to stop, the dogs tired of it before he did.

When we stopped at a pop-up cafe for a cup of tea and a slice of cake, again Joshua stroked the dogs while devouring his Dad’s victoria sponge. The dogs were very much part of this family outing and they are an important part of the family too. Joshua likes these days to kneal on the floor and to throw toys for Kevin and Ruby to fetch back to him. They are not the best at returning to him but he enjoys getting on their level for a game. Although still a puppy, Kevin is taking his lead form Ruby and is gentle around Joshua, as though they both understand that he is special and potentially unpredictable too.

Although they are not official ‘therapy dogs’ who assist disabled people with day to day tasks, they are beneficial for him and they will, I am sure, protect him should the need arise. Ruby is very attentive during his seizures, sitting with him and checking that he is OK. I can recall one holiday walk when Joshua did not want to get out of the car, he clearly knew that a seixure was coming but we thought he was being lazy or obstinate, and overruled him. Within minutes Joshua  was lying on the ground, fitting. A St Bernard came rushing to his rescue but Ruby was very protective : she was only a young dog at the time, but our small cocker spaniel put her front paws on Joshua’s chest and she snarled at thisdog, who was simply curious. The puppy taking on the gentle giant looked ridiculous but showed, even at a young age, what her role was going to be.

I cannot imagine our family without at least one dog in it, and I am sure that Joshua feels the same.

Feast or Famine

While Joshua has been unwell this last couple of weeks, his eating habits have gone awry. I know myself that I do not feel much like eating when my throat is sore or when I have a temperature, but I still worry when he does not eat. Food is one of Joshua’s great pleasures and as I am an acknowledged feeder, his love of food brings me joy too. It somehow makes me feel like a better mother if Joshua eats the meals that I present to him.

Yesterday we had a leisurely morning but headed out to a neighbouring market town around midday. We started with some shopping, where Joshua behaved badly as a protest : I wanted a woolly hat as I had earache, so we went into a familiar walking shop where I began to try hats on for him. He ripped each one of my head and then he pulled a display of hats off the wall, throwing it across the shop. The sales assistant knows us in there but I was mortified nonetheless and I quickly chose the most expensive hat that he had thrown onto the floor. While I was paying, he managed to hop his wheelchair across the shop, despite the brakes being applied. It was very clear that Joshua was not impressed in the first shop, he communicated that dissatisfaction really effectively.

So we dared to take him to a pub for lunch to warm us all up, dreading how he might behave. But as he was happy to be in the coal-fire lit pub, he was an angel. He sat quietly while we ordered and he hugged me and waved at the other diners. My fish sandwich arrived before his bangers and mash, so he ate one of the battered fillets while he was waiting for his own meal to arrive, as a starter. He was gazing longingly at the  table next to us who had a bowl of chips with their sandwiches, so when his sausages arrived, I ordered him some fries too – if only to keep him from stealing our neighbours’. He devoured his own bangers and mash, along with his chunky chips, so he had a large meal by anyone’s standards. He was clearly contented in there and he enjoyed stroking a stranger’s dog who was also begging for the next door table’s food, he never stopped staring at Joshua, hopeful he would drop something or at least take pity on him. Little did the dog know that Joshua was in his ‘hoover’ mode and he was not for sharing.

With a full tummy, we were able to do a little more shopping, without too much protest, though he was most excited to get back in the car to head home. Once back I tried to counter-balance the large lunch with a healthy apple, which he enjoyed too. A couple of hours later I began to prepare our evening meal and Joshua was constantly in and out of the kitchen to monitor my progress, so I was confident that he would eat it up. However, the first forkful was spat out and he left the table, going upstairs in protest. So I enjoyed mine in peace and then I broke every rule in the parenting handbook – I took him some bananas and custard for pudding – yes even though he had rejected his main course! – upstairs to his bedroom – yes, I did not insist he sat back at the table! – and he gobbled them down.

Whether he eats or not is one of the few things that Joshua can control in his life and he makes full use of this free choice, but he certainly made up for lost time yesterday.

There He Goes

My niece introduced me to a TV programme called ‘There she Goes’, which features a 9 year old girl, called Rosie, who has undiagnosed learning difficulties and her family who are trying to cope with her – her parents and brother. I have only watched two of the episodes on catch-up  but I am enjoying what I have seen so far. It has not made me cry at all yet – which is quite a feat – but it has made me laugh a lot  and I recognise so many of the situations that it has portrayed, so much so that this is clearly written by someone with personal experience. The aspects that I recognise are:

  • Rosie refused to walk to the park, she lay down in the road, so in the end they lifted her into the car and drove her the short distance to the park , where she lay in the park on the grass. Joshua also protests by throwing himself to the floor and now that he is taller than me and older, we can no longer simply pick him up and move him to where we want him to be. I now take more time to think why he might not want to do something and he does not have to do it, then he is allowed to refuse – this does not work for school or when we have an invitation somewhere. Too many times, Joshua has protested on the floor, he has been overruled, then he has had a seizure soon after. What we interpreted as bad behaviour, was simply him communicating that it might not be a good idea as a seizure was brewing.
  • Rosie loves a bubble bath, splashes about in it happily and Joshua does too. Rosie’s mum has to employ sneaky strategies to encourage her to get out of the bath. I was shouting at the television, just let the water go, then she will get out!
  • The parents have to use teamwork to coax Rosie to brush her teeeth, it is such an ordeal that it is a two person job! We have experienced that for teeth-brushing and also for nail and hair cutting.

The main thing that I do not recognise is the mother’s reaction to her daughter. She is struggling to accept her disability and wants to know why her beautiful daughter has been swapped for this child who she refers to as a pet who needs looking after. They do not have a diagnosis and she struggled when Rosie was younger to persuade people that there was anyting wrong with her. She took baby Rosie to a music class and she was embarrassed at how sullen Rosie did not smile or join in. The mum in the series does not feel that she can love Rosie and she wants to grieve what she has lost.

While I can understand her reaction to her daughter, I have never felt the same way about Joshua : we had a diagnosis at 4 days old so our situation is different to theirs. But I have never felt that taking care of Joshua was my duty and I have always loved him unconditionally, depsite his disability. I cannot say that I have not speculated about how things might have been different and have thought about he boy that we should have had, but that does not diminish how I feel about Joshua. I was shocked, then was angry later, when a lady at mainstream primary school once told me that we should grieve for the child that we did not have. I enjoy his highs and I tolerate his lows, but I will always be there for him.