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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Fun and Games

Joshua was allowed a lie in yesterday morning as we did not need to be at his wheelchair assessment until 10.30, so I left him in bed until 9 am. When I did wake him, he did not seem to appreciate that he had enjoyed an extra 90 minutes asleep and he was still slow to come round and to eat his Weetabix in bed. So we had a tussle to pull the duvet from his tight grasp as he giggled at his teenager game. He was happy in the car listening to loud music with his two favourite songs on repeat with the windows down , that was until he spotted McDonalds golden arches up ahead of him. When I drove past, it was 10,15 I told him, he began protesting – kicking the car and trying to escape his seat belt. So of course I made him a promise that I would take him there after our appointment, if he was good, by which time it would be nearer lunchtime.

We arrived at the wheelchair assessment centre, where there were just 4 disabled parking spaces which were all full. The rest of the street was double yellow lines and so I tucked my car into a disused entrance opposite and hoped for the best. Joshua walked with me into the wheelchair centre happily and sat down but the receptionist told me that I could get a parking ticket where I had left my car and as a space had come free by then, he offered to take care of Joshua while I moved my car. So I went outside and when I returned two minutes later, Joshua was standing at the back of reception kicking the door to the toilets, with a panicked receptionist looking hopefully at me. I explained that he was not good at waiting these days. So I then took over trying to distract him with the water fountain, writing on some forms and my phone, but nothing held his attention for very long.

Thankfully we were called into the assessment room, where two Occupational Therapists and the sales representative from a wheelchair manufacturer were waiting for us. Joshua sat down for a couple of seconds while he surveyed the scene, picking out the things that he wanted to fiddle with such as an OT’s pony tail, her glasses, her computer keyboard  and a stool on wheels. It was like an Aladdin’s den to him but I tried my best to answer their questions while pulling him away from anything that he could potentially break – I needed to be an octopus to keep up with him, while focusing on lap-straps, brakes, the size of wheels etc. I dreamt of the old days when in hospital appointments when he used to lay his head on my shoulder or lap, and go to sleep, blocking out the conversation about him. But those sleepy days have well and truly gone and now I need to be a juggler and a multi-tasker.

After 30 minutes of these fun and games, we were finished and Joshua meekly held onto his current wheelchair and helped me push it to the car. He settled in the front seat while I manhandled it into the boot. It is both awkward and heavy, but the rep gave me no reassurance that his new chair will be any lighter or neater, as it needs to be tough enough to resist his new stamping on the footplate habit. As promised I drove back to school via Donalds, where he was sweetness and light : waving at everyone and thanking me for taking him to one of his favourite destinations. So when I delivered him to school at midday, I warned them that he might not eat his packed lunch. he gave his teaching assistant a big bear hug, as he was clearly pleased to see her, and then he ran to his classroom to get settled on the settee, hardly even looking up as I left to head to work, even though I felt as though I had done a day’s work already. His school diary says that he was sleepy all day, so maybe he felt the same.

Seasons End

While I am sad that Joshua’s school holidays are over, I am not sad about the end of Summer as I love the different seasons: I have walked the dogs this morning and while the sky is bright and blue, there is a definite autumnal chill in the air that is refreshing. None of our family are good in the heat – it is a real trigger for Joshua’s seizures and we all burn with our pale and freckly skin – so the bonus sunshine that we get in September and October suits us better. I love the beautiful orange and copper leaves as they start to change colour and then kicking through the leaves when they fall to the ground. In autumn we are still going and coming home from work in the daylight and the grass slows down so we do not have to mow so frequently. We have things to look forward to in autumn : both my husband and my birthdays and we go away for October half term.

When we return from that Autumn break, then we always seem to be on the count down to Christmas : the clocks change while we are away and so begins the dark mornings and coming home from work in the dark too. But the upside is that we can keep cosy against the cold, as we start to light our log burner again and enjoy the best jacket potatoes cooked by the fire. Winter can be a struggle for many, with bad weather for driving, like snow, ice and fog and a sense of isolation as people tend to stay indoors more. It is more difficult to find the enthusiasm to go out after work and to do things in the evening as it feels as though the day is cut short.

But just around the corner, snowdrops and daffodils start to appear, heralding the start of spring. The weather warms up, the garden springs into life, there are lambs in the fields and the days gradually stay lighter longer. Spring brings with it new hope and the cycle of the seasons begins again. We are lucky in the UK to have the variety of the seasons. I suspect constant blue skies everyday in Majorca and Florida could get tiresome eventually. Our winters are nothing like as severe as our friends face in Canada – they have constant snow and -30 degrees from October to April, which must become depressing, as they have such brief respite from the cold.

Changing seasons mark the passage of time too, we know what to expect. Although the weather seems to becoming more extreme, we have recently had flash flooding and before that extreme high temperatures, so perhaps we should brace ourselves for a severe winter too. Mum died in Spring, we have survived summer without her here, so it shows that, whatever tragedy befalls us, the seasons carry on regardless and there is some comfort in that.

 

autumn sunrise

Fit to Drop

As a working Mum, it is hard to find time to exercise as it seems as though I am either working or taking care of Joshua, yet I need to find time to do more exercise as I am getting bigger and bigger. My husband and I are using our next respite weekend, to go away on the ferry with our bikes again and I have hardly used my bicycle this summer, so I thought I ought to get some practice in! For the last fortnight I have had to take the dogs to work with me to leave the house clear for our window installers, but now they have finished, they can go back to staying at home. the sun was shining, even though there was an autumnal chill in the air, so I dug my bicycle out, dusted it down and set off with 20 minutes to spare to get the 2 miles to my office. I was confident so I took the longer route round to get there, via the seafront. But it soon became clear how unfit I was as I struggled and I was only just at work on time and even then, I was red faced and out of breath. My legs complained as I climbed the stairs to my desk.

As I recovered, I started to feel more pleased with myself : yes it had been tough but I had made it and it had to be better for me than driving to work. I took the more direct route home at lunchtime and it never feels as difficult going that way and I was pleased with my 4.7 miles by the time I got home then took the dogs a walk. I drove back to work for the afternoon as I had shopping to do after work, but if I just did that every day this week, it would be an easy way of getting some exercise combined with commuting. The problem is that i am a fair weather cyclist – I do not envisage keeping that up on cold, wet or windy days, so I need to find an alternative. Once again I cursed the year -long closure of our local leisure centre as our next nearest is 25 minute drive away, which being less convenient, is less tempting, so I do miss my early morning swims.

I used to joke that pushing Joshua’s wheelchair was my main form of exercise and certainly, caring for him has certainly made me stronger than I would be otherwise. I no longer attempt to pick him up like I did when he was younger, but I do help him out of the bath and I often have to chase him in Tesco, when he makes a bolt for the door as I am packing my shopping away, which amuses the staff as I suddenly sprint after him. Getting Joshua dressed and undressed requires a lot of bending  – really caring is a physical role, just not physical enough; it puts repeated strain on the same areas, in my case my back,neck and achilles. I can remember an OT telling me, before Joshua had his brain surgery ,so he was not yet a teenager, that if he fell to the floor with a seizure and I was home alone, that I should not be lifting his body weight as he weighed more than the recommended maximum. So I asked her what he was supposed to do, to simply wait on the floor until my husband got home?! She had no idea of the practical reality of being a carer. It was only last year that I found some super-human strength to lift Joshua out of the bath, while he was fitting, and to manage to drag and then lift him into his bed, as I had no alternative and his need was urgent.

I do know that if I am going to be fit enough to care for Joshua as we both get older, I need to find an exercise routine that fits into my busy lifestyle, as if it is too hard to do, it will fall by the wayside.

Wheels on Fire

Joshua and I will be going to his Wheelchair Services appointment on Wednesday this week and I feel like a fraud as he barely uses it any more. He used to take it to and from school every day until I had a brainwave last year, and now it goes in on Monday and does not come home until Friday as we rarely used it in the evenings. Last Friday I told school to keep it over the weekend as we would not be using it, as he objects so much to sitting in it these days. Then of course we could have used it on Friday night as he had seizures on the way home and we had planned a walk with a friend, but as it was, he refused to get out of the car and saw I brought him home instead.

These wheelchair services appointments are rare and precious : he was measured for a replacement last year and only now we are seeing the wheelchair rep. I believe. Things move so slowly within that service that I am going through with the appointment as he may want to use a wheelchair more again by the time it is delivered. I recall one of the early appointments that we had that the lady measured him for a small child’s chair, saying that it would be a better fit, but by the time it finally arrived, he had outgrown it and it was useless to him. So I see these appointments as being an investment for his unknown future.

The trouble is that I do not think that what I asked for actually exists : it needs to be solid enough so that it can withstand him stamping on the footplates without them bending or snapping off even, but to be lightweight and compact so that it can easily fit in the car boot. If we are talking about future proofing, then it needs to take account of the fact  that  I might struggle to lift it into the car in the future. His current one, with large wheels, is particularly awkward to manhandle, it is not so much its weight that is a problem when lifting it into the car boot, but there is no obvious place to hold onto to get a solid grip. Concerned friends have also suggested that we need some electric assistance when pushing up hills, but I have not requested that much future proofing as any battery pack would also make it heavier to push, so that would be a mixed blessing.

I do need to face the stark reality that as Joshua gets heavier and stronger as a young man, that I will be getting weaker and older. I always say that, because his right arm does not work, that his left arm is super-powered,  and he can move quickly when he really wants to – we often have tussles and battles of will during our weekly Tesco supermarket shopping. I much prefer him walking round with me, pushing the trolley, and being more involved,  rather than me pushing him around in the store wheelchair, as we used to do.But I have to admit that it is much harder work and I am much less likely to buy everything on my list, as we negotiate over which aisles I am allowed to go down and I am dragged towards the tills when he has had enough.

So the idea of this appointment at wheelchair services is that it will make life easier for us and more comfortable for Joshua, but we will see what they are suggesting and how cooperative he will be, I am not too optimistic.

Life and Love

We had a family birthday party for Mum yesterday in the same restaurant that she enjoyed on Mother’s Day in March. My husband had worried that it would be upsetting to return to the same place and he had suggested that it was better to leave the happy Mothers Day memory there, but I was adamant that this was the best place to celebrate Mum’s birthday, somewhere with memories of her there. There were 11 of us in the party all together, with two of Mum’s sisters and their partners, one of her nieces, both of her grandchildren and her daughters and son in laws, so it was quite a party.

We had driven over in the morning and we all arrived around the same time in the sunshine, so we had drinks in the restaurant’s garden while we hugged, toasted Mum and perused the menu. The food was all delicious and the chatter and laughter was constant, so it was a perfect birthday lunch. There were fewer tears than I had expected, I only wept when I was touched by the card and bottles of wine that Mum’s eldest sister had organised, as she was not with us. Somehow the time flew by , while the waiting staff had not rushed us at all, it was time to go when another family arrived for their evening meal and we were still sitting at our lunch table!  So we moved back outside for our hugs and farewells, then all headed off home.

We had decided against taking Joshua to ” Granny’s house” as he has not been since her funeral and then it was heartbreaking when he was looking for her in all of the downstairs rooms, assuming that he would find her in the next place he looked. How do we explain to him that she is not there any more, that he will not see her in this life again? We have not really come to terms with it yet, so how can we expect him to understand? But maybe I am just protecting myself, his track record of moving on is pretty good, he shows no real signs of missing his Grandpa and Grandad that he has lost in the last 5 years. As I have said before, Joshua is about the here and now and he appears to believe that out of sight is out of mind. While he would give Granny a huge bear hug if she turned up – she was always one of his favourite people – he does not appear to pine for her. Maybe Joshua could teach me about loss, perhaps he has the right idea : live and love for the moment.

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.