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.

Day 4 of Holidays

Joshua had another late lie in yesterday until after 10 am.Not only do they mean that he is well rested once he finally gets up, but it gives us some Joshua-free time too. I enjoy my early morning dog walks and I am confident that both boys will still be asleep when I get back again, so I am not even missed. I was on the telephone to BT about broadband when Joshua appeared expecting some breakfast. This week he is getting at least 12 hours sleep, typically 10 pm until 10 am which has to make him feel better and more alert.

We decided yesterday to go for a walk, with the dogs, along the prom to the next town along, which is about 2 miles away. We walked along the prom, one of us either side of Joshua holding his hands, with two dogs on the lead too ,as they are not allowed on the nearest part of the beach in the summer, and Joshua strode out happily. My husband carried the rug in his rucksack so that we could rest on the beach whenever he needed to and when we got the first part of dog-permitted beach, Joshua sat on the rug to recover while I played ball with the dogs. A brown jack russell cross began to chase Kevin around in large circles and they enjoyed a lot of exercise together as we looked on. His owner came over to talk to us to tell us all about her dog Max , who had been bought to calm down their autistic daughter, who also had epilepsy. The dog was a beloved family pet but had not had the desired impact on their daughter. I hear of several families who hope that a dog will have a beneficial impact upon  a child with learning disabilities, as everyone has heard the tales of miraculous transformations that a pet has brought about. It is however a big responsibility on a puppy and I worry that it is not a guaranteed outcome but should be regarded as a bonus if it does happen.

Once rested, Joshua was more than happy to walk along the sands until we reached a cafe for lunch, where we sat outside in the sunshine overlooking the sea. We had not quite made it to the next town but almost, and we knew that Joshua would have had enough by the time he got back again, so we re-traced our steps back, this time stopping at another cafe for an ice cream. Our holiday cottage is at the top of a steep hill just above the beach, and spurred on by knowing where he was, Joshua scaled that hill and was less out of puff than his parents! I cannot recall how many years it is since he last walked up that hill ,so I was so proud of his determination and his exertions. He curled up on the settee for a nap when we got back to the house, but what an achievement and it has to be better for him than being pushed about in a wheelchair. It is better for my husband too as he is getting heavy to push uphill – I can no longer manage it and always defer to my husband, while I will happily push him on the flat. But his wheelchair has not yet come out of the car boot on this holiday, we carry it for emergencies only so I really hope that it stays there all fortnight.

 

Table for two

Joshua and I had yesterday off school/work, as we knew that we would be 3 hours away from home still, after the family wedding. I sneaked out of bed at my usual 5am and ran myself a bath, but as it was running, a sleepy Joshua appeared to join me. So he had the bath water instead. He wore a hotel dressing gown after his bath and sat on the bed settee to relax, but within 2 minutes, he began to have a cluster of seizures. I timed and counted them and thankfully, he only had six and then they stopped of their own accord and he tried to curl up on the settee. So I walked him carefully back to bed, where he enjoyed another two hours deep sleep and slightly delayed, I enjoyed my turn in the bath.

Surprisingly, we were first downstairs in the smart hotel dining room and we were seated at a table for two beside the window, overlooking the gardens. Joshua had his medication in some  very posh yogurt with rhubarb compote and then my husband’s Aunt, Uncle and two cousins arrived to join us. Joshua was delighted to see them and kept shouting across to them ” I like you”, spoiling the quiet atmosphere of the smart restaurant but at least he was shouting something pleasant. He enjoyed cornflakes but  rejected the pancakes that I ordered for him, as he is not used to a cooked breakfast and he decided that cereal would suffice. The bride and groom arrived with their friends  and Joshua was oblivious to the fact that the other guests might be feeling delicate the morning after, as he continued to shout out.

We left them all in peace and packed up our things as we had an appointment to keep : an hour’s drive away, Joshua’s new off-road wheelchair that we ordered back in July, at the start of the school summer holidays, was finally ready for collection. The designer of the clever “trike” showed us how to fold it away and lift it into the boot, after Joshua had a brief ride around the car park to ensure that it fitted his long legs and that everything worked. We were very soon on our way again and we had another three hour drive home, where my husband was waiting for us, before opening his birthday presents. We took him out for a birthday tea and later I got my apron on again and made him a victoria sponge for a birthday cake.

All in all it was a jam-packed weekend again and I was certainly ready for my bed.