Party Animals

It was Joshua’s Farewell party at his children’s respite provision yesterday afternoon, and it could not have gone better. I arrived  with homemade cake to share  and he was sitting on the settee when I arrived but leapt up, grinning, when he saw me in the doorway and I had countless hugs – he alternated between me and his keyworker, he was so excited.

We moved into the dining room , which had been decorated in a Shrek theme in his honour as well as having Good Luck banners on the walls, and  we added my cheese straws to  a generous savoury buffet. One young man was sitting patiently at the table desperate to begin with the party food and another took his pizza into the conservatory to enjoy in peace. But we were surrounded by staff eating with us and chatting, reminiscing about the fun times that they had enjoyed with Joshua and the tricks of his – like hiding the telephone and playing hide and seek – that they would miss.

Joshua might have shied away from the large group, but he loved it and milked all the attention. He joined in and even ate some party food, and he seemed to sense that the party was in his honour somehow. He waved at the staff gathered around the table and would occasionally flash his tummy at them too. It was easy, to feel the love in the room – he adores the staff and they clearly adore him in return and they kept telling me how missed he was going to be and how his weekend would never be the same again.

I was given a card that they had all written lovely good luck messages in as well as a beautiful photo album, full of photographs of their many outings together and the various members of staff that he has been with over the last 4 years. I opened the album and started to read a message, but I had to stop as I felt my eyes prickle with tears. I thanked them but said that I would look at it once we got home.

It was a very emotional party, I am not very good at change or goodbyes, Joshua is much better equipped for both. But the overwhelming emotions that I felt were love, gratitude and pride of our son. I was proud of myself too, for managing to hold in the tears while I was there, but that did take supreme effort and the floodgates opened once I got back in to my car and again later on the telephone when I spoke to his keyworker. It seems hard to believe that he will not be staying there ever again, although I have agreed that we will come and see his keyworker in the future, and that knowledge helped me to say goodbye. I want them to know what a great job they do for our families, they are a lifeline for many of us, but I am confident that I made that clear.

We left Joshua there for his final night and he was treated to a special trip to Donalds,just him and two members of staff, which of course went down very well. I teased the staff and told Joshua to make the most of his final stay and to stay awake all night long. But when I rang to check all was well at 9pm, he was tucked up in bed already, oblivious to the tears that were being shed over him. He has the best idea, love them while you are there but then move on to the next stage without looking back,  he is confident that he will be loved, wherever he goes – and so far, I do not think he has ever been wrong.

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Next Steps on the Journey of Life

Yesterday was an important step in Joshua’s respite story, as he had his first visit to his recently approved Adult Short Breaks provision. I took him there for 9 am and he was certainly curious about where we were driving too and he hesitated to get out of the car when we arrived. But with some encouragement, he climbed out of the car and we walked towards the door. I rang the bell and he was then inpatient to get inside and he pushed past me to try the door handle, which is what he was doing when the manager came to let him in. He smiled at the three staff members and marched through into the lounge. He kept hugging me for reassurance but he was not unhappy to be there and remained in the armchair waving, as I left, promising to return three hours later.

When I did return at midday, he was pleased to see me and began waving goodbye to the staff. They told me what he had been doing and had some very sensible questions about what some of his gestures might mean and we discussed offering him choices. Joshua began to kick my shins, just gently, as a hint that he was ready to go and to stop talking. He did not say anything to the team but he did utter a ‘thank you’ once back in the car. He will return tomorrow for a slightly longer stay, which we have been promised will involve a trip to Donald’s – they know how to win him over.

I was anxious about the new setting , it felt the same as when he started at nursery all those years ago : How will they know what he is asking for? Will he be afraid of these strangers?Will he be upset by the change? Will they take good care of my precious boy? And the same as most new settings, he took it all in his stride of course, he is much more adaptable than I am.

Joshua has had several respite places in his life : the first Special School that he moved to when he was 7, had a residence attached to the school. I was very resistant at first but after a few months, he began to stay on Monday evenings and he loved the hustle and bustle and it saved his long journey to school on Tuesday mornings. But we left that school in Spring 2011 and so we were left without any respite for a full year , while our social worker sought an alternative provision. In 2012 he began to stay at a local authority home one weekend in four and that worked well, until the company changed the property’s use to Adults residential.

We then had a 9 month gap again while we had to go out of area to find any suitable children’s respite facilities. Our social worker gave me two places to look around in a neighbouring county, both would be at least an hour away from home. I fell instantly in love with the first one that I looked around; the team leader opened the door and asked me if I could walk like a penguin? I laughed and said that I could and immediately felt that both I and Joshua would fit in well here, so I declined to view the other alternative, as I had found what I was looking for. Joshua had a  slow, phased introduction and it worked out brilliantly at the provision where he currently goes for monthly short breaks. Joshua adores the staff and the feeling seems to be mutual. They are planning a leaving party for him next month on his final weekend, after 3.5 years of monthly visits, and I will be bringing cake and tissues.

But nothing stays the same forever, things change and he has to move on, to allow the next youngster to experience the joy that he has felt while there. I was delighted with our first visit and although Joshua was shy, he took it all in his stride. It is a sign of his increasing maturity that he is slight more reticent of strangers than he once was and a great indication of his increased awareness of what is going on around him. Three years ago, Joshua was mostly asleep, they had to plan activities around his daytime sleeping patterns, so he really did not care where he was, so long as they had a comfortable settee. Today’s Joshua is much more lively and aware, but he has always found a way to charm his carers. Right back when he was 4 years old, the Headteacher of his nursery school had written about him ” Joshua has a way to win hearts”, she spotted his skill that early on and he has never lost it, in fact he has finely honed this skill as he has got older. It is the best tool that he has at his disposal and I am  confident it will help him throughout the rest of his life.

All Change!

Yesterday morning at work, I got the telephone call that I have been waiting for,  for a couple of weeks : our social worker rang to tell me that our choice of adult respite provision has been approved by panel. I knew that it was being heard ten days ago but since then, there had been silence and so I was beginning to fear that it had been rejected and that we would have to go through the painful appeals process.

But no, the decision was made and actually approved a week ago. So now we are free to begin the introductions process apparently, so that there should be no gap in provision. When Joshua first went to his current provision, we had a lengthy induction process with him staying longer every month : the first month we took him for tea and stayed with him, then a month later we dropped him off for tea but left him to it. Then the following month he stayed a full Saturday and we picked him up after tea and then, he stayed for a full Saturday, both day and night. So it was only in month five that he stayed for his whole weekend. This phased introduction was to give him the chance to get familiar with the place and staff and for them to learn more about him. When we had the assessment at home, I had explained that Joshua was very laid back and that he handles change well and that I had never known him pine for me or get upset when I left him somewhere, such as nursery or school. But they had a set routine for phased introductions for every child.

This time, now he is an adult, I am hopeful that we can condense his introductions into a shorter period and hopefully use the Easter holidays to get started with some daytime visits. Joshua still does not pine or get upset when I leave him but he is certainly more aware than he was 3 years ago, nowadays. When he first began at his current provision, their main challenge was the fact that he was asleep all the time. They had to plan activities in the day for when they thought that he might be most likely to be awake and he was often curled up on their settee asleep. He rarely sleeps in the daytime now as his nighttime routine is so much better, so he is much livelier than he was back then and he needs more managing and entertaining.

The two downsides of him being more lively are that:

  • He has developed attention-seeking behaviours , such as kicking walls and doors, to ensure that he is not ignored and that he gets his own way. Unfortunately he occasionally also kicks people’s shins or ankles, particularly if they have their back to him or if they are talking to someone other than him!
  • He is more aware that he is being left somewhere new, with new people. In the old days, he was too sleepy to object or probably notice that we were leaving him somewhere. But now he is more conscious of change and while he will not object, we have seen a more timid side to him, He will hold my hand tightly when we arrive somewhere and he will be quieter than normal, while he processes what might be going on.

But on the positive side, he will be able to express if he is not happy in the new provision now, he votes with his feet, whereas in the past he would not really have had the energy or awareness to object. So his feedback will be invaluable in those transition days, as we have chosen where we think he will like best and where suits us for its convenience, now it is over to them to make him feel welcome and  to him, to give our choice his seal of approval.

Joshua is much better at change than I am, he does not look back ever, once he has moved on. So he loves his current respite provision and staff but he has shown that he moves on well, without a backward glance. Joshua is about the here and now. I have known teaching assistants that he has been really close to at school , so much so that you cannot think that he will tolerate a new one. But within days, he is hugging the new TA and blanks the previous one in the corridor, much to my embarrassment. I guess it is a useful survival technique to focus on the here and now and once something or someone is gone from your life, do not mourn their loss, but make new connections instead. We certainly have interesting times up ahead and I am so grateful that our choice has been approved.

Be careful what you wish for

Now that our son has turned into a determined show off, I guess I can expect more calls from school like the one I had yesterday afternoon : There had been three new ‘behaviours’ to be reported to me and one had resulted in retaliation:

  1. Joshua had tried repeatedly to pull the glasses off the face of a fellow student. Irritated by him grabbing at the arms of his glasses on his face, his peer had hit Joshua on the nose. They had checked him over, and other than some redness and some hurt pride, Joshua was fine as he ‘sulked’ on the settee. Now I am surprised that this is the first time that school have seen this behaviour, as he has been pulling at mine and Yorkshire Grandma’s glasses for months and that is where his phrase ” No Glasses” came from originally, after being told no repeatedly.  It is certainly irritating.

My response to the member of staff who called me was, that he will have deserved it, as it is very annoying, as he waves around your eyes like an annoying wasp. I told Yorkshire Grandma and she too hoped that with this reaction he might desist, as rather than retaliating, I simply remove my glasses as they are clearly too interesting.

2. But that was not all he had been up to, he had also been opening and shutting the door to the girls’ toilets! Now Joshua has always loved messing with doors and enjoys the big sound that they make when slammed shut. But was his choice of door yesterday  deliberate, who knows? At my

3. Thirdly, Joshua began to remove his trousers when he was in the classroom. We had discussed this development earlier in the week as I suggested that it was being used to gain attention. The member of staff recognised that he was choosing to strip when he did not have one to one staff attention and I am sure that behaviour, immediately gained a response.

So that was all in one afternoon of fun for Joshua. I know that he is pushing boundaries to see what works and what he can get away with, perhaps the bop on the nose might not be the kind of attention that he was after!

Before Joshua went to school, I can clearly remember saying to our lovely health visitor : I hope that he does grow up to be a bad boy… that way at least he won’t be just a cabbage. Now you know what they say about being careful what you wish for….But actually, although we need to teach him better ways to get attention, I do really love this lively, unpredicatble young man who is finding out how to communicate and how to make his presence felt after so many years of being mute and passive.

 

Game changer

Change is difficult to handle, but sometimes it marks an exciting new adventure too : last night I went out with my colleagues to a Leaving Do for a dear friend, who has left our company after 31 years in the same role , to move onto  a new career. I am confident that I will still see her and social media also means that we will stay in touch, so it was more of a celebration of our time together and less of a goodbye, I felt. We all had a great evening out. Last weekend I visted another friend who has recenty separated from her husband and she has just moved into a rented flat in a new city, with no job as yet. This too is  a  new chapter in her life, and while anxious about a future on her own, she is also excited by the new beginning and her new possibilities.

Joshua handles change better than many of his peers but he still favours the familiar, which is one of the reasons that we prefer to holiday in the same cottages, so that we all know what to expect. This week he returned to school but in a new classroom and with a new teacher, but this is less traumatic in the 6th form at school, as they all have the upstairs of school across all three year groups, so he will have gone to the same shared area for his locker and used the same changing facilities, so it is only the classroom base that will have changed, which is more subtle than lower in the school and as Joshua has always wandered around all of 6th form, I doubt he will have noticed any difference. whereas last year was a bigger change and he kept wanting to return to Seniors downstairs, as he had been with the same teacher for three years, so that is where he wanted to gravitate.

I heard from a friend that her son was reluctant to enter the new classroom and she left him in school, running around the dining hall with staff trying to coax him in. Joshua has always had a fairly relaxed attitude towards change : when I left him at his Granny’s house last week, while I went for a meeting, although he had not done that for years, he did not fret or fuss, so long as he gets attention and a steady supply of food, he would never pine for me, he somehow adjusts and seems to think ‘oh right, this is what we are doing now is it? fair enough, crack on’. That even applied when he was wearing a cast after botox injections, he did not appear to be freaked out at all by the fact that when he awoke from a deep sleep that he had a bright red cast on his leg from his toes to just under his knee. Or after his teeth extraction back in July, I thought that he might have been distressed by two gaping holes in his gums, but he found a way to comfortably eat what he wanted to and adapted quickly.

I realise how fortunate we are to have a son who adapts to change well, in fact I think he adapts better than I do. It is possibly a blessing for him not to have the capacity to fret or worry, his ‘here and now’ outlook on life is a really good one, as he does not waste the hours or nervous energy on worrying about the future or what might happen. Some epileptics might be reluctant to go certain places or engage in some activities, for fear of seizure activity, but I have never taken that approach as I am concerned that you could waste his entire life waiting for seizures, much better to simply be prepared for them to arise at any moment, but to crack on anyway. Perhaps my son and I are more alike than I thought?

From A to B

Joshua returns to school today after around six weeks holiday  and I have been warning him for days now that it was about to happen. Yesterday morning, as I left home for work, our conversation went like this :

” Joshua I am going to work now”

” Bye Bye” with a big grin

” You will be going back to school tomorrow..this is the last day of your holidays!”

” No way!!!!” with another giggle

I wonder if he knew how appropriate his words were, if he meant them or if they just fitted accidentally. I like to think that he meant every word.

Pupils of Special Schools are transported by the Local Authority to their school, as they are unlikely to be on their doorstep like a mainstream school would be. Joshua travels around 30 minutes to his special school and he is  fortunate enough to be the only pupil from our area and so he travels solo in a taxi, rather than a mini bus, which would involve several pick ups and so, an earlier start potentially. Now that he is in 6th form, we have to make a contribution towards transport costs of £540 for the year, which began last year, which is a significant contribution  and I am not really sure why it arises in 6th form only, now that education until 19 is compulsory, whereas it used to be voluntary.

So this is a service that he is entitled to and that we pay a substantial amount of money for, so you would hope that it was organised professionally. As of this Monday, I had heard nothing about who would be transporting our son to school. I chased it with an email, to ask what the arrangements for this academic year might be? I heard back, on the same day at least, to say that there was no change from last year and that the contract was due to begin today.

So I texted last year’s driver and escort to check that they had had a good summer and to confirm that I would see them this morning. The escort replied immediately to say that while she was being maintained, we had in fact got a new female driver starting. I was reassured that, despite the last minute information to absorb, at least Joshua had some consistency in his passenger assistant. Yesterday, the day before the service is due to start, she texted again to warn me that the driver had changed already and that it would now be a new man. Now Joshus is not someone who is upset by change, but plenty of his peers are, and this last minute update could be enough to set them off badly for their return to school and I do not think that the Local Authority properly ever take this into account, as they are so blase about changes.

So wish us luck with the return to school, there will be a lot of nerves around today, amongst both pupils, parents and staff I suspect and a period of adjustment will be necessary. I personally am not anxious about Joshua settling back into school routine and I doubt that he is concerned either : he has been on such good form over the summer, that I think he is ready to go back to school and give the staff some grief, he is ready for some attention from a range of teaching assistants and staff and I am confident that he will soon get into his stride with both a new driver and a new teacher. I wish everyone good luck though, heres to another year!

Transition Trauma

Joshua will be 18 next spring and so we are beginning the transition process, from child to adult, which already seems to be a minefield, even though we have the much-valued support of his Adult social worker. We have already had difficulties with Joshua’s finances : I could not release some childrens savings bonds that Granny had given him, as they were in his name and so he needed to sign the form to redeem them and to access his cash. I explained that Joshua could not read a form or sign his name and I was told that he should not have received these bonds unless he had capacity to understand the concepts of interest accrual etc. I calmly explained that when my mother gave him his first bond when he was born, nobody knew what his capacity for understanding  might be. In the end, only when I involved a solicitor to ask questions on our behalf, as I was too exasperated, did common sense prevail and the savings were released to Joshua, via my bank account, on the strict understanding  that I only use the funds for his benefit! They are buying him an off-road wheelchair so I am confident that I have not abused his savings by treating myself!

The second time when it became an issue was with respect to his benefits when his Disability Living Allowance became Personal Independence Payment and the DWP insisted on writing to my son…Dear Mr C….. I called them immediately and explained about his mental capacity and told them that I would be acting on his behalf, reading and signing any letters and forms. They accepted my explanation, or so I thought, as the week after Mr C received another letter asking if he was happy for me to become his appointee!! So another phone call to explain that Mr C would not be able to read or sign their form and they apologised… The week after, another letter to Mr C asking that they met with him and his potential appointee to assess my worthiness! Faced with such automated letters and lack of common sense, it is very difficult to hold it together. a young girl from DWP came to school last year, we met in reception, she tried to engage Joshua in conversation and immediately realised hs lack of capacity and asked me to sign a form and then I was made his appointee!

I guess we have to jump through these hoops because of the abuse that some disabled young people have received but what happened to ‘innocent until proved guilty’? In all of his 17.5 years of life, we , as his parents, have never done anything that was not in his best interests, based on the available information at the time. Now up until 18 years old, we have that right as his parents but once he is 18 years old next year, he is an adult and therefore he has the right, not the capacity but the right, to make his own decisions. We have explored, with a solicitor at our own cost, whether we should be applying for Power of Attorney for Joshua but as he does not have mental capacity to sign that power over to us, and never has had, it is not appropriate.

It seems that the next year is going to be challenging, that everything that we have learned up to now about being the parents of a child with special needs now becomes irrelevant as he will become an adult. The law no longer recognises our parental authority, even though he has the cognitive abitity of a toddler, and so I can see some grim battles up ahead where we will be arguing on the side of commons sense and we will be tripped up by the law and the inflexibility of organisations like the Department of Work & Pensions. I come back to a question that I ask most days, is life not hard enough with a son with special needs without this additional obstacles thrown in our way. I have written about feeling as though I am walking along a tightrope before: well, now all sorts of new weapons are being thrown at me as Joshua’s 18th birthday approaches, trying to knock me off balance. What should be an exciting milestone birthday, will be a landmark and the start of a new chapter in our lives as Joshua’s parents. Wish me luck!