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!