I am lucky enough to be going on a class outing tomorrow to a nearby wildlife park as a volunteer. There will be 21 children and 10 adults going in school minibuses.I am really looking forward to it, it will be the perfect end to a hard-working week. I am hoping that the weather stays dry but that the eye of heaven does not shine too hot, or else that will add extra concerns about skincare from the sun. Some children do not appreciate seeing their mum on a school trip but fortunately Joshua is so used to seeing me around school, that he is unlikely to object to my presence.
I loved the first school trip that I went on with this school, five years ago. I was asked to go along so that I could be on hand to administer Joshua’s emergency medication if it was required. I was told that I did not need to stay with the class, just had to be close enough to be summonsed by mobile phone if I was needed. But I chose to stay with the class as we looked around a local park and took a land-train to a seaside town. Joshua behaved well so my medical experience was not called upon but it gave e a great insight into how the class operated and to get to know both the pupils and staff better.
I had thought up to that point that Joshua had been assigned to one teaching assistant , who would take care of him full time. It quickly became clear as we walked around the petting zoo that every staff member was familiar with every pupil, as they were constantly swapping about in a very natural, organic way. They each knew every child’s fears and foibles; so they responded like a team when an autistic boy had to be hurried past some peeling paint, as if he had seen it, he would have begun to pick at it until it was all off the lamppost. Another child needed reassurance as he walked in the gardens of the stately home, through a conifer tunnel, as he hated the dark. They knew which children should not sit together when we stopped for our packed lunch. It was all very impressive and was controlled so naturally, with no discussion, that it gave me even more confidence in the school, as as that time Joshua had only been part of the class for 3 months.
So I am looking forward to my day out tomorrow
I swapped school experiences yesterday as a friend asked me to collect her son from his independent school at the end of his school day, as she was working away. So for the first time in a long time, I got to wait in the car park at 3.45 with all of the other Mums, Dads and grandparents. There was lots of socialising that went on between different groups and I saw first hand what we miss out on when our children are transported to and from a special school: I eavesdropped conversations about planned holidays, traumas about clothes shopping and various ways in which parents of children of a similar age were all sharing with each other.
At Joshua’s school, we have tried to re-create that same environment, somewhat artificially, through the monthly coffee mornings. That is an opportunity for carers to air their views and concerns amongst a receptive audience, who they know will understand and will support them, offering advice and often, simply agreeing that their life is challenging. At those events, there is no need to explain about what it feels like to have a child with special needs , despite the differences in every child’s disabilities, we learn that it is a struggle for us all. Joshua does not have the behaviour difficulties that many parents live with daily, regularly having their homes destroyed or feeling under the threat of violence from their own offspring, but his main challenges of epilepsy, sleep issues mobility problems are also demanding, but in a different way. Some of the young people will be able to go on to live independent lives once they are adult, but sadly Joshua will not be one of those.
In the same way as the independent school, Joshua’s special school is giving him the best opportunities for learning and it tries to develop his life skills for the future.Joshua will not have the musical or sporting opportunities that are clearly fostered at the private school, but his more fundemental needs are being met on a daily basis. He receives encouragement to meet his potential everyday and real efforts are made to find alternative ways to engage him. So both schools, with their very different pupil-bases, are both striving for the same goal – to prepare their pupils for the best future that they can have and to make them feel good about themselves, by celebrating successes, no matter how small.
Today is World Book Day, when we celebrate reading and when our children are encouraged to dress up as their favourite book character in school. In the past, Joshua has simply worn his stripey onesie and has gone to school as one of his favourite characters – The Tiger Who Came to Tea! This is a book that he genuinely adores and he even fills in some final words like ‘tea’, ‘Daddy’s beer’ and ‘your cafe’ if you give him long enough. That is always the sign of a favourite, well read story for Joshua and it equally applies to familiar Hairy Maclairy and Mog stories.
As a young boy, Joshua adored books and would look at them for hours on end. One of his favourite activities was to stand in front of a mirror, holding the book up like a teacher to the mirror and waffling away in gibberish , or Joshua-ese as it was once called by a health professional, as though he were teaching a class. It always melted my heart whenever I saw that and I think I have some of that game on video somewhere. Then as he grew older he stopped ‘twaddling’ but would still enjoy sitting looking at books, endlessly looking at pictures and turning the pages for himself. Books were still a real source of pleasure to him, but they were used in a different way.
Sadly one of the complications of his brain surgery has been the loss of his fine motor skills in his right hand, which we were warned about. Pre-surgery we did not think he had any fine motor skills in his right hand and so were not worried by the inevitable loss of something that we did not think that he had. But we had under-estimated his ability to ‘prop’ with his right hand; he used to be able to hold a book in his right hand, while turning the pages with his left. But now his right hand is virtually useless, it can no longer hold a book or a guitar, to allow the left one to do the rest of the work. So his brain surgery has almost stolen all of his pleasure from books. But he does find a way to balance a book on his knees and can turn the pages with his left hand, but it is a much more precarious and unreliable process now. It means that hard backed books that flop open have now become easier to read as well as ones that have push buttons to make noises, rather than more traditional stories that fill his book shelves.
So today I will dress Joshua in another orange character for school and he will no doubt enjoy the fun of the admiration that he will attract, even though the concept of World Book Day will really go over his head. Joshua is a child that will probably never read, but that does not mean he cannot enjoy and celebrate the joy of books with his peers.
Joshua went back to the Occupational Therapist yesterday so that she could inspect his arm, to see how much looser it was since botox and to increase the stetch on his splint. I love the fact that he does not bear a grudge; this lady made him cry when she first fitted this splint, yet he gretted her with a smile and sat beautifully while she did his stretching exercises and then adjusted his splint. I was amused in the waiting room before we went in, that he inspected everyone who was waiting and smiled at the chosen few. He certainly has a ‘type’ who catch his eye, but it is surprisingly varied. He does not always choose the more obvious choice and I wonder if he his selection criteria include twinking eyes.
I was telling the OT how much of a flirt he was and while she was adjusting his splint, she produced a full length mirror for him to admire himself in! He took my mobile phone from me and he posed with it, admiring how cool he looked, which made me laugh. He would look up each time somebody entered or left the department, trying to catch their eye with his smile , but then would resume his posing once they had gone.
When we got back to school, I was still giggling about this and as he made a beeline for the same TA that I had seen him grab the day before, I commented how much he seemed to like her. I shared the hospital story with her and she described him as ‘the biggest flirt in the school’! what an accollade, my son the flirt. In his life, Joshua has not been the best in school for anything and so now maybe he has found his niche, my heart soared.
I will never forget the report that the Head of his mainstream nursery wrote as he left to progress up to primary school,so even then he was honing this skill: she wrote :’Joshua has a real talent for winning hearts’ which I thought was so kind at the time, of course it made me cry, and now we can see that he has developed that skill further and is using it to his advantage, on a daily basis.
Social media has inspired my topic again today as I was struck last night by a mother on the hemi site that I have spoken about before, who was in utter despair and was sharing with the parents that she knew would understand her dilemma. She wrote about her autistic son who has reached a point when his mainstream school can no longer support him and that he was being referred to his nearest Special School. And she was devastated on his behalf because she knew that he could not bear to leave his best friend and that he was desperate to be the same as his peers. Logically she knew that the special school was probably the best place for her son, but she was so disappointed on his behalf. Clearly she reached out to this online support group to share her story and to garner feedback.
No sooner had I read this outpouring of despair that I had contributed my words of support and encouragement based upon our own experience of a transfer from mainstream to special school. I tried to explain, as the first mum to comment, that her son may well finally find all of the support that he needed in small classes with expertise for her son’s condition. Over the course of the evening, the thread of shared words of wisdom fascinated me and she responded by giving more details and explored her tears and reaction. Literally it was as though she was exploring the issues with a group of close friends, yet I imagine the others, like me, had never met her or her son.
Of course, this debate made me reflect on our situation with Joshua too. Similarly we reached a point at which his mainstream primary school could no longer support him adequately. And so we had that same conversation and began that search for the best setting for our precious son. Gut feel is so important when looking around a new special school I found, I had a physical reaction when I found the right setting and similarly, we both knew where we were not prepared to send Joshua under any circumstances. Not able to get our first choice of special school, Joshua spent a couple of years in a school that did not suit him, but I am delighted to say that in 2011 Joshua, after a tribunal to get there, joined his current school and so at ten years old, Joshua was finally where he belonged.
I did not have the complication to deal with that this mother has, Joshua did not have a best friend that he had to leave behind at mainstream – nor does he currently have a best friend, although I have now seen how fondly many of his classmates regard Joshua. Social acceptance to be the same as his peers was not an issue for Joshua either, he has always been happy to go his own way as he seems fairly oblivious to what his peers are doing. So in many ways, the decision was made much easier for us – there is that silver lining again – and there is such comfort in knowing that your non-verbal child has found his ‘educational home’.