Prom Night

Two years ago I felt really sad as I saw all the Prom photos on Facebook of Joshua’s peers from mainstream high school as they had finished their GCSEs and were moving onto A’levels at High school or college. It was really hard not to resent the fact that Joshua was not there, standing next to them in his suit looking all grown up and smart. It was a stark reminder that Joshua’s life has not turned out how we had hoped and dreamt for him, as though he was stuck in a time-warp while his ‘friends’ were moving on to exciting new times and experiences.

Well now, 2 years later, Joshua is going to his first school Prom on Thursday night. I took his new suit into school yesterday and there will be a hairdresser at school during the day to put gel in his hair! The main focus of the Prom will be the oldest students who will be leaving school to make their way in the world. Thankfully I have two of these ‘dummy’ Proms, before I will need to face the terrifying prospect of Joshua leaving the safe, familiar and comfortable school that has been his home since 2011. By 2020 I might be able to get through the night without bawling, but I doubt it very much. We fought hard to get Joshua into this school all those years ago, when he was just ten years old,  and I knew from my first visit that this was where he belonged.

So the ‘leavers’ will go to the hotel ,from school, in a limousine/party bus and the younger students will follow in a coach. They have two hours before us parents are invited at 7pm to join in the fun and then we take them home again at 9pm, it is still a school night after all. Joshua may well find a quiet corner for a nap during that time.A lot of work has gone into the Prom by school staff and for this opportunity, I am so grateful. It is a great example of his Special School doing something special to try to replicate, in a safe way, the mainstream experience.

I will of course report later in the week how it all goes and how both Joshua and I react to this special night.

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Togetherness

Joshua used the word ‘together’ a lot over this weekend and beautifully in context too :

On saturday morning, when he came downstairs, he looked out of the kitchen window and commented ” No bus!” which is what we call his school taxi, so I replied ” That’s right Joshua, no school today.. we are going out in the truck later”. He loves a drive out in our pickup truck so he replied ” Truck.. Together” and he beamed at me. That warmed my heart to see that the prosepct of a family outing, made him so happy.

On that trip later in the day, we pulled into a service station for diesel. I hopped out of the truck and told him that I would not be long and he replied ” together!”. I filled the car up then went inside to pay, during which time he had kept opening the pasenger door to peep at me. Joshua slid his feet onto the ground – he has very long legs – and swivelled round in his seat, but thankfully he was trapped by his seatbelt and so he could not get out , so that we could be together.

Finally at teatime, I asked him if he would prefer to eat his lasagne at the kitchen table or on his knee in the lounge, in front of the television? He pointed at the kitchen table and requested ” together”, so that is what we did.

This progress is so special as he is using so many more words these days, but he is not just repeating them as he did this time last year, he is using them perfectly in context, to express his clear preferences. He has never in his life really had that interest or communication skill to enable him to make such choices. In these three examples, Joshua clearly indicated , more than once, that he wished to be with me, his mum, which , coming from a 17 year old, is very special indeed.

The Sleeping Lioness

Most mothers would tell you that they will do anything to protect their children, it is a natural instinct that arrives when they are born. You see this helpless little baby and you know that you will do whatever you can to make sure that it has the best care possible and nobody can get in the way of that protective instinct.

If that feeling applies to mothers of ‘normal’ children, just imagine how much stronger that feeling is when you are told that your baby is extra vulnerable, that he has brain damage and may not walk, talk, see or hear?  You realise that ,at 4 days old,  your son will need your protection for the rest of his, or your, life, whichever ends first. This mother/son relationship will not be like most others: Joshua will never leave home and live independently, he will never bring his new fiancee home to meet his parents or produce grandchildren and he will never be in a position to look after his elderly parents as they become more vulnerable too.

So, in that context, perhaps it is understandable just how hard we mothers fight for our children and it is , in my experience recently, a daily battle just so that Joshua can have his basic human rights. I should not have to fight to ensure that he is safe when transported to and from school, I should not have to complain to ensure that he gets the nappies that he needs to keep him comfortable overnight and I should not have to request that he  experiences a full school day…….

I have often heard that a mother can turn ferocious, like a lioness, in defence of her offspring and I certainly recognise that determind, protective fight in myself. Joshua does not have the verbal ability to speak up for himself and so, as his Mum, it is my duty to be his voice and to try to understand what Joshua would ask for , if only he could.

Joshua will turn 18 next March and so then it is all change again, as he will be considered as an adult : so his current respite provision, which we love so dearly, will end abruptly from his 18th birthday and so we are looking for adult alternatives. So far,we have not been successful in our local area, so it seems likely that he will have to continue to travel some distance to access that decent provision. Thankfully he can stay at his current 6th form until he is 19, but once respite is resolved, we then need to start to review his day care options. My Husband and I are visiting a solicitor this afternoon to discuss Power of Attorney over Joshua as it will no longer be sufficient that we are his parents, once Joshua is 18. We will not be able to make any decisions for him, even though his cognitive ability is that of an 18 month old, the law recognises that it will be 18 years since he was born. He has already been asked by DWP to sign forms that he cannot read and had his bank account frozen until he can prove that he has capacity to make a withdrawal. Why, just because he is 18, will we , as his parents, suddenly stop making decisions in his best interests? It makes no common sense at all.

So we will have to learn some whole new words and processes for our adult son, now that we have finally got him into the best school and the best respite, it will be all change again. It seems that there is little continuity from Children’s to Adult services, so we are having to tell professionals all about our son, as though he will change from the 17 year old that lives with us today to another man on his 18th birthday. Fortunately this lioness is ready to roar and pounce.

Dance like nobody is watching

While we were on our short break last weekend, I was on the deck of the ferry while my husband was watching the England Word Cup match. I sat on the warm deck to read my book, feeling as though I was on a cruise! I heard some excited shouting from the deck above me and when I looked up, I saw a young man with Downs Syndrome. He was having a brilliant time being buffeted by the wind, he was leaning into the breeze and pretending to be blown away by it. I sat watching him for ages, he was so happy and absorbed in his windy game and he had no inhibitions at all about the noise that he was generating, but I enjoyed the happy sounds.

His father was close by, but not too near so as to cramp his son’s style. I admired that approach and it reflects how I tend to be with Joshua too – he needs his independence and to have what he finds fun, even if it is not the traditional view of what teenagers typically do. I try to stand back when Joshua is dancing or exploring in public, he cannot be left totally alone due to his seizure activity and his lack of sense of danger, but I do tend to keep at a safe distance, so that he can feel safe but also gain some sense of independence, no matter how small. I have now found peace with other people’s staring or reaction to Joshua bouncing in front of a busker or waving at strangers in a cafe. If it makes him happy and does not harm anyone, in fact those two things actually benefit others, then carry on Joshua and fill your boots, I say!

As we get older, typically we worry more about what others think of us and our behaviour, as a result, becomes more inhibited and less natural. This boy on the deck was loving the sensory experience of leaning into the gusty wind, he was having fun and not caring what anyone else thought of him. I think that he had the right idea and I wish many more of us would feel free enough to ‘dance as though nobody is watching’ as I was able to share his joy, just by watching him.

Reunited again

I wrote last Thursday that my husband and I were heading abroad for a short break, while Joshua was in respite. Well we all returned home yesterday and so normal life resumes – Joshua has been up since 3am, so we are having some quality early time together, could he be making up for lost time with Mum?

We had the best time away, it could not have been improved : the weather was perfect with blue skies and warm sunshine everyday, we cycled 79.5 miles so feel very virtuous, so that meant we could eat well and not feel too guilty and the hotel was beautiful. We were able to be a couple and were able to do things that we cannot do with Joshua  – to cycle, to enjoy a leisurely lunch sitting people-watching without being hurried on, to browse in more than one shop, I enjoyed going round a museum listening intently to an audio tour and to go out for a late drink. I wake earlier than my husband so I loved cycling around the city, at sunrise, just soaking up the beauty of the buildings bathed in orange sunlight and the peaceful streets and canals, all before breakfast.

I did not phone his respite provision until we got home yesterday morning, but they kindly sent me a text each day with a brief update and some photos, which was just enough to put my mind at rest. Once ressured, I could focus on our break again. so we are all topped up and it felt like we were away longer than just a long weekend.

I left work early yesterday so that I could see Joshua and give him his tea. He was clearly excited to be home and to see me, I got lots of hugs, grins and kisses. Monday is our Riding for Disabled night so we headed off for a ride and he was giddy but he never took his eyes off me the whole time and I kept moving around to test him,but he found me and waved, pointed and shouted “No way!”

We all had an early night and I am now pondering where we should go for our next trip away………..

The Best Laid Plans

Tonight my husband and I are going on a short holiday overseas and we are repeating a trip that we did both before Joshua was born and when he was a small boy, who was towed behind my husband’s bicycle. I am hoping that now we are both older and heavier ,that we can still manage the cycling.

But we are only able to go away because of the kindness of others and I am most grateful for that. Joshua will go home after school , and stay overnight with a trusted friend tonight. I am really hoping that he does not wake at 1.30am , as he did for me last night, for her!! She will take him back to school in the morning and from there he will be collected, as usual, by taxi and driven to his respite provision.

I asked them months ago when I first thought of this idea and I was encouraged to go, I was reassured that they would handle whatever Joshua threw at them – whether that is cushions as usual, or perhaps more seriously chicken pox – he has been itchng his tummy! – or a cluster of epileptic seizures that require rescue medication before they will stop. I trust them completely, he has been going there for 3 years now and I know that they are very fond of him and that they take his changing behaviour in their stride: when he first started there, Joshua was asleep in the corner all of the time and they had to plan activities around his sleeping. Now our lad is unrecognisable as he bursts onto the scene , refusing to be ignored. He is no longer passive but he expresses his opinions such as refusing to eat their meals but relishing an outing to his favourite “Donalds” and he is always awake during the day and usually sleeps through at night.

But despite his more vocal, lively presence , they encouraged me to make the holiday booking and to simply give them an emergency contact ‘just in case’! I have gone overboard and given them three willing contacts : Yorkshire Grandma, his Aunt and my friend. So thank you to them too, I hope that they are not contacted – I do not expect them to be – but if they are, thank you for doing the right thing by Joshua, as I know you will.

So having planned all of Joshua’s care, it only remains for us to cycle off into the sunset tonight.

Am I being too sensitive?

Joshua and I were dancing to a live band at an outside event at the weekend – well I was dancing around him! I was waved over by three people, who had clearly been watching us together for some time. There were two ladies, who told me to be careful with my back, and a man. They told me that they had recently taken over a pub and that they would like to invite me and Joshua over for a complimentary meal , when they would      ” make a fuss of him”. I asked them why, as I was confused.

The ladies explained that they used to work with adults with learning difficulties and they knew what hard work it was. The man explained that he had a 30 year old daughter with physical disabilities, so he understood and he told me all about her.

Now that was a very kind gesture, and they made me promise that we would come in the summer holidays. But I have to say that it also made me feel uncomfortable as the conversation continued and I have been musing since, why that my be and I think I might have worked it out:

They were sympathising with me for my situation at a time when we were having fun. They wanted to treat us and make a fuss, as though that didn’t happen very often – Joshua is always going to eat out, it is one of his favourite things to do; he is forever asking for a ‘cafe’ or ‘Donalds’. Although I know it was well-intended, it somehow managed to get my back up too and I am not sure if I will take them up on their offer or not.

In the same way as the vicar who, as I was leaving a church service  with Joshua, managed to offend me by saying ” well done!” What was he congratulating me for? For getting my son out of bed , dressed and into church? For being brave enough to take him out in public, when he was shouting ” No way” during prayers? For managing to keep him entertained for the hour long service? I really don’t know and I did not stop to ask but it did rile me as it was an inappropriate thing for anyone to say, but in particular when it came from his mouth somehow.

Perhaps after 17 years of this I am too sensitive and I read too much into people’s comments, but I would urge you always to think carefully before you speak, as you never know how your words will be interpreted.