Jeans for Genes Day

Today at school it is ‘Jeans for Genes’ Day. when the staff and pupils are encouraged to wear denim to raise money for charity for people with genetic disorders. Joshua’s school does this event every year but it does not have the public profile of Red Nose day, Children in Need or even the Macmillan Coffee Morning that is coming up next Friday. The idea is that the children pay to wear their jeans to school, but while this might be exciting in mainstream schools, for many of the pupils there, deviating from the norm will cause them stress disorientation and anxiety. Joshua is in 6th form now so he is not tied to any uniform, he can wear his jeans any day of the week, so it is nothing special for him either. Nonetheless, I will dress him in jeans and pay his fee to the charity as I am sure there are some children with genetic disorders at his school.

Unless a parent or child confides their diagnosis to you, I do not know what each pupil’s disability is. I know that the majority of pupils at Joshua’s school  have autism but this can often not be the sole diagnosis, as it can offer be accompanied by ADHD , epilepsy or other conditions, so no two pupils are the same, Once we got baby Joshua came home from school, the hospital called us back for blood tests, to investigate the possibility that the combination of our two blood types might have been the cause of Joshua’s stroke and subsequent brain damage. They got very excited over the first blood test results as it seemed to show some critical combination of our two bloods that could have created the problem, but on re-testing, they admitted that the theory had been made in error. At that time, 18 years ago, we were keen to understand why it had happened and if we were to have another child in the future, might the same thing happen again. In the end the medical profession could not give us any reassurances or explanations.

I do not know much about genetic disorders, but presumably children may inherit them due to hereditary conditions which may or may not be predictable before birth, or they could be a new condition that develops due to a fateful combination of the parents’ genes. The only genetic disorder that I know is routinely tested for during pregnancy  is Downs Syndrome. The issue for me is how much reliable information you could be given about your baby for the parents to be able to make an informed decision about its future? Even with the risky amniocentesis test, no promises can be made about whether or not the child will definitively have the condition as only odds are given and even then, no estimate of the degree of disability can be given. Even when Joshua had arrived and was scanned, although the doctors told us about his ‘devastating brain damage’ they could not reliably transform that into guarantees about his ultimate abilities and quality of life. So I believe that the prediction of Downs Syndrome, for instance, can only be a judgement for the parents to make as to whether they could cope with a disabled child, whatever the degree of that disability, The parents  who have the test are then given an unenviable choice to make about their willingness to continue with the pregnancy and presumably, other parents with known inherited conditions also face that same choice. But in our experience, and for the majority of parents that I know, the disability of their child was a shock delivered as early as 4 days old in our case, or perhaps much later, as a toddler did not thrive as expected or even later, as a child did not develop like his or her peers at school. By that time, the child is a loved member of the family and a child that needs extra care and support, and there is no decision to make, it is simply a matter of doing the best possible to encourage that child to meet its potential, whatever that might be.

So for now, Joshua will be proudly wearing his jeans today and he will donate to  the charity , Genetic Disorders UK, and hope that our donation will help some struggling families or to fund some vital genetic research.

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On the Buses

Yesterday’s parent coffee morning at school was well attended and we saw some new faces, who stayed the whole morning too. We covered lots of topics but there was one issue that was a problem for many of the group, that of School Transport. When your child attends a special school, the local authority provide transport to and from the school. We have been very lucky as for most of the time that Joshua has been at this school, he has traveled in a taxi with just him, the driver and an escort, so they have gone straight from our house to school, with him being collected at around 8.15 and getting home before 4 pm.

I realised yesterday how fortunate we have been, even though once in 6th form we have to make a £500 contribution towards the travel costs for the year. Since the new term began, other families have had terrible issues with school transport : One 6th former, despite his parents paying his contribution, has not been provided with any transport as the council seem to have forgotten about him, even though he has been using school transport for years. He gets distressed as he sees his regular bus pass by his house, en route to collect fellow-pupils, but it no longer stops for him. Instead his parents have to juggle jobs and three other sons going to mainstream schools and somehow get him to school themselves. That is bad enough, but the Transport department appear now to be ignoring Mum’s calls and emails so we are two weeks into term and their mistake has still not been corrected.

Two other Coffee Morning Mums have daughters on the same school bus, which is taking such a long route home, that although school finishes at 3.15, it has often been nearer 5 pm before the girls are getting home. Another mother had refused to put her young son onto the bus that had arrived for him at 7.30 just because the driver was passing by on his way to collect the escort so it suited them. So too many children are spending too long on the buses, so that they can fit more on and use fewer buses it seems. But that is unfair as they will be tired and potentially agitated by the time they get to school , so it could set them up badly for the rest of the day. One Mum has now taken her autistic son off transport and she receives petrol money to drop him off and collect him herself, and as a result, he is much more settled at school as a long, noisy bus ride was not how he needed to start his day when he only lived 5 minutes from school.

So it seemed to be a topic that is creating a lot of problems and  hopefully, by the next coffee morning in a month’s time, it will have settled down into a better routine. But it certainly made me appreciate that system that we have in place, Joshua is a very lucky young man to be chauffeured to and from school in relative luxury and on a direct route too.

Penultimate Prom part II

Joshua had already sent his 3 piece suit into school , ready for last night’s prom, but he was asked to send in toiletries, slippers, a towel and PJs yesterday as everyone in 6th form would be having a shower and hair-wash prior to the prom and a hairdresser would be coming in to coiff the students. I sent a note with his bag, that I would advise against changing him into his Pyjamas as that is  a clear signal to go to bed for him and I was already concerned about his likely reluctance to stay awake.

The sixth formers stayed on at school after home time to enjoy fun and games in the beautifully decorated hall, which had a ‘The Greatest Showman’ theme. It was held in school, rather than a hotel this year, but they still made it special and more than a school disco with the circus theme. Parents were invited after 5 pm to join the party. As I had gone to the wake of our next door neighbour of our holiday cottage, I was never going to be there until after 6 pm. Both my husband and I arrived at the same time at 6.30, to find Joshua stripped of his boots, jacket and waistcoat as he was too hot, cooling off in the foyer. He had had some small seizures and a sleep, and his ex-teacher was there with him , poised with his emergency medication, should he have needed it. He was pleased to see us both, but he clearly thought that we had come to take him home as he was reluctant to walk back to the noisy, hot hall with us, as he protested by throwing himself to the floor.

But we insisted and waited for him to get up and encouraged him to the dance floor and to the games and his peers and the 6th form staff who were all dressed up beautifully. Hairdressers had been in to style the students and the girls in particular, looked amazing with curls and flowers in their hair. He danced with me for a while, then we sought a cooler area so we went outside where there was a breeze and we encouraged him to have a drink. Joshua made a few bids for freedom but he also had some magical moments with staff and fellow pupils too: He spent time sitting watching the others on the dance floor, waving and he danced himself too;  music  and his favourite faces kept him going, when clearly he just wanted to sleep really. At just before 8 pm, he made his final bid for freedom, shuffling down the corridor on his bottom and so I gave in, it was the end really, so  we took him home, recognising that he really is not a party animal, not on a school night anyway! He went to bed as soon as he got home.

This is his second prom now, both on the hottest nights of the year it seems, so we have learned that while they may look smart, waistcoats are just too warm to wear on a hot night. We have some funny photographs from the photo booth, where he mainly looks bewildered , clearly thinking that the world has gone mad. He certainly enjoyed some of the party and it will be good practice for next July, when he will be one of the leavers , who’s special night it really is! These events do not happen by accident or luck, but staff put in a lot of hard work to make them  a success and everyone seemed to enjoy themselves, so I would like to thank all of those involved in giving the students the Prom that they deserve and the opportunity to behave like mainstream teenagers. Thank you.

School Days

I had a full day in school yesterday, being the Parent Governor on the interviewing panel of internal candidates, which I always enjoy doing. As the others on the panel were staff, they had a different perspective to me: I was looking at candidates to see if I would want them to be middle management if Joshua had a crisis in school and I was also thinking whether or not I would want to work with them. We interviewed seven in total and it took all day, with no lunch break even, as we used that break time to catch up when we overran in the morning.

Every candidate gave us a presentation and was asked the same questions and we each scored their responses, then we discussed our thoughts after each one left the meeting room. There was consistency in our scores, although the staff members on the panel had additional expectations, from knowing how they perform in school already. Whereas my concern was their attitude towards the children first and foremost, then their approach towards parents secondly. In a special school, with non-verbal pupils, gaining information from parents is paramount to understanding the child and so it is important for me to glean how much value they place on foster good relations with home. Good teachers, in my opinion, work in partnership with families, and that approach benefits everyone involved.

We hardly left the meeting room all day and so we were totally focussed on the interviewing process. However around lunchtime, between candidates, I checked my mobile and I had two missed calls from school. So I walked up to the office to see who wanted me and it had been Joshua’s teacher, who had forgotten where I was. She was concerned that Joshua had been getting flushed on and off all morning. It was a very sticky, airless day and so I had advised them to cool him down by removing his boots and helmet, by soaking his feet in cool water and taking him outside for fresh air. The summer term is always difficult for him as heat is one of his main triggers for seizures. I reminded them where I was and went back to the meeting room, telling his teacher to interrupt if Joshua should continue to overheat or develop seizures, but I heard no more through the afternoon. But he did not peaky when I collected him at 3.30 and he dozed on the journey home and had a lie down when we got back. I think that did the trick in his cool den, as the threatening seizure activity thankfully never materialised.

It was an intense but rewarding day in school and one that helps me to feel involved in the future direction of the school. I do not only  review candidates in terms of their fit with Joshua, but with other pupils that I am aware of who present in very different ways to him. But for today, it is back to my day job.

Dear Diary

I wrote yesterday morning that Joshua’s home/school diary told me that he had hit and kicked staff and that I was disappointed to read that news. I had a phone call yesterday afternoon from the member of staff who had written in the diary, she rang me to apologise for the negative diary entry. I replied that there was no need to apologise, if that is what the day had been like, then I had appreciated her honesty. She explained that she had not been with Joshua on Monday and she was relaying what other staff had told her, but that he had not behaved that way all day and that he had had good times too. She had re-read what she had written the previous day and had felt bad enough to call me, but I reassured her that there was no need.

The home/school diary is a lifeline at a special school, where you do not have the school gates experience for daily updates from staff and other parents. This is particularly true when your child is non-verbal and cannot explain about his day or answer any questions satisfactorily. I have volunteered in Joshua’s school and so I know how busy and unpredictable the days can be. So I can appreciate that finding the time to write something meaningful in ten diaries, will take  precious time out of the classroom. So I am always grateful for any insight into Joshua’s day that I can glean from the diary . It is always the first thing that I do when I get home from work, after greeting Joshua, to assess how his day has been and I am disappointed if it has not been completed.

In return, I always aim to write something in it too, reporting on what kind of weekend or night he has had, including perhaps how well he as slept or eaten. How can I expect to get any information from school if I do not return the favour? The diary should be a two-way street for communication between home and school, though I am aware that I only have one son that I am writing about, whereas teachers have a whole class’s diaries to complete, which must be challenging.

There are other more high tech means of sharing information – via email or an App for instance – but I still prefer, the old fashioned hand-written note in a diary, as it seems more personal and I have the whole year’s book to refer to at a later date, I have kept all of Joshua’s home/school diaries from his special school years, as they are a useful reminder of the various stages that he has been through in his life. This hitting, vocal  teenager is unrecognisable from the sleepy, quiet boy who never made it through the school day without at least one nap and was a passive presence in the classroom, and I have a hard copy record of it to keep forever. So, thank goodness for the Home/School diary and long may it continue.

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.

Being a Parent Governor

It was the Spring term Governor’s meeting last night and so it meant me returning to school after work for a 5.30 start. This is now my second 3- year term as a Governor, a post that I was happy to renew. My view initially was that it was a useful way to find out more about what is going on behind the scenes of Joshua’s school. Then when I was asked if I would become a Parent Governor, I thought that if I wanted Joshua to stay there until he was 19 then I ought to have some input, to try to make it the best school that I could, both for my son and his peers.

I will not lie, I found it confusing at first as there is so much jargon in education and so it was pretty myseterious to me initially. But gradually, with termly meetings and by asking ‘silly questions’, which nobody minds answering, I learnt to speak their language. In the early days, it was simply a listening project. I have gradually found my fellow Governors less intimidating and I now recognise that it is invaluable that they have the input of parents, as we have a unique perspective. They may have studied the theory of special educational needs but we are actually the experts, as we have lived with it 24/7. That personal experience of sleepless nights, tantrums in the shops, feeding complications, medication etc. is invaluable and it needs to be represented in the management of the school.

As a minimum commitment, Parent Governors are required to attend three evening meetings a year, one per term. That is the least you need to do as you first join the Governing Body. That is not too onerous but then you are asked to join various committees which are additional meetings and you are expected to attend training too. I have volunteered to get involved in recruitment, disciplinary issues and also the performance review of the Headteacher.

For me personally, there are several perks of being on the Governing Body :

  • I have really enjoyed sitting on the interviewing panel when new school posts are created. It has been a privilege to see the immense effort that staff go to, even for internal promotions, and to see just how much it means. I have been able to influence the staffing of the school, always holding in my mind, would I want this teacher/Teaching assistant in Joshua’s class? That gives me a powerful perspective that is unique on the panel and with that insight, I am confident we have made some great appointments
  • Joshua’s school staff have always teased me about my status as a Governor as it is often mentioned in a humourous way : a new member of staff bumped into me with Joshua’s wheelchair, she was teased mercilessly that not only had she crashed into a parent but she was a Governor too! I still see her around school now an she always laughs and cringes . During one early Annual Review, Joshua’s teacher called me his ‘boss’ which confused me at first. It does hold some sway within school and it gives me somewhere to voice my concerns and opinions
  • Joshua’s school became an academy and being on the Governing Body, I had a much clearer understanding of what it meant and how it would impact. When the school has had OFSTED inspections, I have had detailed feedback on the outcome. They say that information is power and if that is the case, then I have been made to feel more powerful within the school
  • Finally I feel that I have made some friends within the Governing Body. There are opportunities to chat before the meeting, but I suggested that we go out for a pub tea after the meeting, and we did that for the second time last night. It is an opportunity to relax, chat and eat and to get to know my fellow Governors better and to make it a more sociable occasion. I hope that that practice will continue.

I am proud School Governor and I have begun attending parent events – I have provided the refreshments at both the Junior and Senior Open Mornings, introducing myself as ‘their parent governor’ so that they know who I am.  I hope that in doing this, alongside my Parent Coffee Mornings, that other parents will begin to feel able to approach me with any concerns that they may have, so that I can bring their views to the attention of the Head and the Governing Body, if necessary.