Grand Band Stand

We went to an agricultural show yesterday and although we were without Joshua, I found myself thinking about him all day. He is not a big fan of such shows so he wasn’t missing out . We parked in a long – grassed field and I found myself being glad that I wasn’t pushing a wheelchair through the high grass. Similarly the crowds would not make wheelchair access easy. 

But I did gravitate towards the brass band, Joshua’s favourite part of the show, and I sat on the grass and enjoyed their music. My attention was grabbed by a family with a young autistic boy in a wheelchair close by. He was mesmerised by the music , as Joshua would have been, and his family , particularly his teenaged sister who kept giving him a thumbs up sign, were clearly thrilled by his pleasure.  The boy looked as though he was probably difficult to engage and so this entertainment offered them real respite, with the family sharing in their son’s joy.

We will all seek out activities that bring our children pleasure and calm,  and it increases the pleasure of those around I am sure. Music is such a blessing and the band had a real talent in spreading genuine joy. Joshua has always felt music, you can see it running through his body and it makes him tingle all over. Music is a special language that speaks to Joshua  and one that he adores more than anything. I am delighted that he has that special passion in his life and one that he will always be able to have access to, as he gravitates towards it wherever he goes.

Up up and away

On Thursday night Joshua had another of his sleepless nights, when nothing would settle him. He constantly called out ‘mummy’ ‘daddy’ and ‘bed’ but would not lie down in his bed!finally in the morning , the brewing seizure arrived to explain his wakefulness and it was replaced with staring and s refusal to sit still but being frozen in wobbly statue poses that looked destined to end in tears. 

He picked up on the packing and so he took himself outside to wait in the car. Joshua was returning to his respite provision for his weekend and we were heading away from there. He was delighted when he arrived, beaming, giggling, high 5 Ing and some selected staff were hugged. We were reluctant to leave him. Anticipating more seizure activity but the balance of his happiness and him being vacant , reversed giving us the confidence to leave after several attempts at goodbye. We laughed as leaving when he called one of the carers a monkey!

When I called later, after we had both enjoyed a well earned  nap , two different staff told us that he had been the most vocal that they had ever heard him! He had even mentioned Jack, our dog who died last week, which suggests once again that Joshua is more aware of his surroundings than we might think. I really hope that he can put seizures behind him and that we can all enjoy a fun weekend, playing like monkeys!

Home is where the heart is

21 years ago today we moved into our current family home, little suspecting what ups and downs we would have inside those walls. It has served us well and continues to do so. It is the only home that Joshua has known. It has witnessed many of his triumphs and also his struggles too.

When we brought an immobile Joshua home from Great Ormond Street hospital after his brain surgery two years ago, we were fortunate enough to adapt a downstairs bedroom for him – which he still uses when he needs to – and an impromptu bathroom in the hall, with an improvised bath on wheels! It has accommodated birthday parties and family Christmases over the years. And has room for all of our pets to play.

So on this anniversary, we thank the house that has become our home. Somewhere that Joshua is always delighted to return to , often to the words ‘back home’

Speaking his mind

I have been thinking about the array of words that Joshua has as it clearly shows what is important to him. Joshua used to have a much wider vocabulary than he now has, epileptic seizures deprived him of much of his linguistic ability. But he has still got key words in his repertoire that show what really matters:

Joshua can get our attention by calling for ‘Mummy’ and ‘Daddy’ and he uses these  everyday. Joshua somehow says our names in a variety of tones to indicate what he is expecting from us ranging from a gentle version which suggests love to a loud, demanding shout which is rather cross and is reprimanding us. There is also the heart-warming ‘Mummy’ that he exclaims when he is pleased to see me.

Joshua then has a range of words that he uses appropriately to ask for his favourite things, which are very useful : he can ask for ‘cake’, ‘bath’, ‘bed’, ‘show’, ‘tea’ and ‘Movie’. He will keep asking until he gets those things and so he has a range of requests as well as taking you by the hand to what he would like or taking himelf to the bathroom, for example, and running the taps is less subtle.

But Joshua is also very able to express his dissatisfaction as he has a very powerful and loud ‘No!’, so again you are in no doubt of his meaning. There are three levels of Joshua’s negativity : it begins with simple no, but if you persist and he is not impressed, then he will point and wag his finger at you while repeating his ‘no’. But if his wishes continue to be ignored, in the old days at the hairdressers or the dentist for example, then he will protest by biting his finger and then it is even more clear that he is not happy with the situation. This is a really helpful hierarchy of ‘no’s’ and it is a helpful guide to give people when they first meet him.

Joshua is not equipped to have a conversation with us but he still has sufficient language to be able to make his basic needs, wants and dislikes clearly understood and in that way he is more fortunate than some. It continues to be a thrill whenever Joshua adds a new word to his repertoire, he repeated ‘kiss’ to me the other night as I asked for a goodnight kiss. I have always believed that there is a store of words tucked away in there, just waiting to come back out again.

Muddling through

When Joshua was born, we were told to take him home and to treat him like a normal baby, despite his diagnosis of brain damage. The outlook was bleak but nobody really knew what he would or could achieve. So that was what we did and we were delighted when he passed his milestones as he proved that he could indeed walk, see and hear. It was easy to convince ourselves that he was going to defy the doctors and that he was going to be delayed, but would eventually catch up with his peers.

But at 4 years old, his epilepsy took hold and we had to start the trial and error process with medication. His epilepsy seemed to slow his progress down and became the biggest complication that he had to cope with. We had been warned by the GP that with his brain damage, epilepsy was very likely. But it was just a word then, nothing either of us had any experience of, and so we did not appreciate what it might entail for Joshua and the impact that it would have on his development.

It is odd how you can be thrown into the world of disability in this way, quite a baptism of fire.I have always held the view that as parents receiving a diagnosis like Joshua’s on day 4 of his life, while we were still in the Special Care Baby Unit that we should have been allocated a social worker at that point, automatically. One should have appeared and introduced themselves to us and left their contact details for when we were ready to ask all our many questions. As it was we were years down the line before we sought out a social worker and he began to open doors for us, that had previously been closed. If one could not appear so quicky, at least we could have been given an information pack with helpful details and telephone numbers in it. There has to be a better system to help to prevent new parents falling through the gaps in the system, at what is a bewildering time in any new parents life. We were very lucky to have a brilliant health visitor who picked up the slack and did more than her job required, but not everybody will be as fortunate as us.

A giddy kipper

I have documented a lot about Joshua’s difficult sleep patterns, the fact that he seems to be all or nothing with his sleep. As the school holidays draw to a close, we ought to start to get into a better routine of earlier nights and getting up before mid-morning but that is easier said than done I find. Joshua had a happy, lively day with Yorkshire Grandma yesterday and he was beaming from ear to ear when I got home from work. She reported that he had been that giggly and jolly all day long, which is great to see. Sadly though, when Joshua is giddy, theer is often a nagging doubt that a seizure may be on its way or that a sleepless night lies ahead, which can take away some of the pleasure of seeing him on such good form. But his cheesy grins were so heartfelt that it was impossible not to be infected by his clear enthusiasm for life.

But unexpectedly at 7pm, Joshua dragged me upstairs insisting on an early bath and even turning on the taps himself to show me his intentions, so he was in his pyjamas before 8pm and was tucked up in bed. But later the plan disintegrated and he jumped out of bed and stood on the landing calling out. The sleepy boy had disappeared and had been replaced by a noisy, wide awake teenager who kept shouting out ‘bed’ but would not stay in it. He came downstairs for some cereal and we had a snuggle on the settee and tried to settle down. No seizure came and eventually Joshua was persuaded to go to sleep in his bed, where he is still sleeping now.

But this does not bode well for getting back to a school-time routine. It normally takes him a couple of weeks to settle in and to manage to stay awake for a full school day after a holiday. He is delighted to see everyone but then he seeks out his giant bean-bag for a lie down, worn out by all of the socialising. But Joshua is nothing if not unpredictable, he likes to keep me on my toes, so who knows what actually lies in store? I am hoping to see more giddiness along the way.


Down by the riverside

Once Joshua was topped up on his missing sleep, he was on good form again and we all enjoyed the last day of our weekend away. We drove into the countryside and went for a walk that ran along the riverside that was wheelchair friendly for Joshua and that was flat and about the right distance for his companion and we set off for the pub, where our reward would be sunday lunch. Not long after we started, Joshua’s companion offered to push his wheelchair, which I took as a kind offer. But he then signed to Joshua to get out of the chair and he was brokering a swap, which made us all laugh. He slowed down but was encouraged to keep walking, pointing out the white pub in the distance as his goal. Joshus enjoyed the luxury of being pushed along the river walk.

We settled outside when we arrived at the pub and ordered lunch. Both teenagers weregiggling and happy – one to be finally sitting down and to have food on its way and the other, pleased to be out in company and to have food on its way. We had to wait longer than either would have liked, but we were able to keep them amused. When their fish and chips arrived, all hilarity disappeared as eating is a serious business and requires full concentration. After pudding we set off the walk back to the car and again, Joshua’s companion began to complain of being tired. He chased my friend for a promised , but elusive, piggy back, so that involved some running  and for a short while, Joshua gave up his wheelchair and stretched his long legs allowing his friend to rest his weary legs. With  a lot more encouragement, we made it back to the car, which was kissed as he was so pleased to arrive back. It was a beautiful river walk , in spectacular countryside, but typically I find that teenagers do not really appreciate views and I am pretty certain that the scenery did not really impress Joshua or his companion.

We drove back to the cottage and packed up, our weekend away was over. I am so pleased by how both boys got on well and had a fun time. I hope that we will repeat the experience again in the future but before next time, I would like to learn more signing so that I can communicate better with Joshua’s friend . I picked a fair amount up over the weekend, I now know more than I did, but I would like to be able to communicate properly as my inadequacy with signing must have been frustrating, but thankfully we had an interpreter. I must add to learn sign language to my list of skills that I still need to acquire. If he was frustrated by my inability to speak his language, my travelling companion never once let it show.