We were invited to friends for tea last night and Joshua was clearly thrilled to be there. He tucked into the bowl of crisps as soon as he arrived, as though they were only out there for his pleasure! When we sat around the table for our evening meal he beamed at everyone sharing his rough high 5s around the table. He was either too giddy or too full of crisps but he didn’t eat much chilli, but that didn’t spoil his fun.
We cleAred the table and five of us played cards, surrounding Joshua in shouts and shrieks and energy. He loved being amongst the fun even though he could not follow the game. So he began to blow raspberries to join in with the buzz and he responded happily to the laughter that greeted him by making more rude noises as it clearly entertained the group. He was a happy performer.
As we left he was high as a kite and I feared that he wouldn’t sleep, but he was worn out by the fun and games and sociable time. So we both flopped into bed and were soon dreaming away.
I arrived early this morning to collect my boy from his respite provision and I was surprised to find him sitting in the lounge all dressed and ready. He grinned from ear to ear when he saw me and offered me one of his bear hugs as the best possible welcome. Then the staff regaled me with stories about how lively he had been and what a delight he was to have to stay. I must have glowed with pride while they detailed his cheekiness and how some of the staff had been disappointed not to be described as either a ‘cow’ or a ‘monkey’ by my son!
Joshua plays to an audience – the staff would mock shock at his insults , he giggles, they laugh too and so the cycle continues. It is possibly the closest to two way conversation that Joshua gets as their banter continues.
Whether or not it is true I am not entirely sure but the manager told Joshua that he would be missed once I took him away as he had made a big impact with them this weekend. They felt that they had seen the real cheeky side of personality this stay and that is the side that is the best company. His smile and giggle is infectious and he is interacting in a way that he rarely does. To be able to show that side of himself shows that Joshua must have confidence in those carers and reassures me, if any reassurance were needed, that he is happy in their care.
As we left, the next batch of young people were starting to arrive and the staff were clearly still enthusiastic to greet them for their stay. It is real skill to make this tough caring role appear to be fun but their affection for their charges seems totally genuine and I am very grateful for that.
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.
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!
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’
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.
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.