8 months is a long time, so perhaps you feel you'd like to know a bit more about what I've been up to. It's a long story, so I hope you've got a cup of tea and are sitting somewhere comfy!
The bottom line is that life has gone from mad chaos to, well, madder chaos! The only thing that could make our lives more hectic would be if we got a dog - luckily neither myself or my husband are dog lovers!
James managed to get through most of the last term of school uneventfully. All the winter bugs and viruses had worked their way through his system so he managed to get through a whole term without missing a day. This was a major acheivement - the first two terms, he was missing at least one day alternate weeks! I was called into school on numerous occasions which started to get embarrassing! If a qualified doctor can't decide whether he child is well enough for school, what does she do with patients?!
In May we had booked a week at The Thomas Centre - the descriptions and ethos made it sound like an ideal venue for a holiday for families like ours. It is impossible to explain how much organisation is required when going away with a child like James. He needs his routines and can't be allowed to roam freely around the house/grounds unlike other children his age. He gets bored and distracted easily so needs to have activities available to him but if he doesn't enjoy them we need to be able to leave quickly and diffuse the situation. So a holiday "village" set up specifically for families with autistic children sounds ideal doesn't it? We phoned ahead and made sure there would be stair gates (to keep him out of the kitchen) and with plenty of preparation felt we were leaving with all we'd need. But things didn't go according to plan. The first hurdle was that a week before we were due to go, I fell down the stairs at the train station and fractured my coccyx. Ouch. There is no treatment, other than rest and painkillers, so I was in agony and could barely bend for the week before we left. I wasn't relishing the idea of a five hour drive with a sore lower back, and my expectations weren't dashed! Not only was I in agony, but James found the journey very difficult and spent the majority of the time throwing things out of the car window (thankfully, not himself or his clothes!). We are now considering buying a new car with electric windows at the back!
The complex itself was lovely - there was a small childrens play area in front of the cottage, a large trampoline in the grounds, a heated swimming pool which you booked out for the family so had total privacy, a games shed with ten pin bowling and a pool table, and a play room with a piano and children's toys. Perhaps my biggest disappointment was the fact that whilst luxurious and comfortable the actual cottage wasn't geared up to a very active autistic child. We spent the first few hours "de-Jamesing" the place, putting things out of reach, moving lamps and breakables into other rooms and generally worrying about how much damage he'd do. I was surprised that this hadn't been considered when designing the place, to be honest.
The week had a lot of ups and downs. Actually, an awful lot of downs for me, but that was as much to do with my levels of pain as anything else. There were surprises - for instance James HATED his trip to the Aquarium in Hull and was indifferent to the animals at Rushmoor Park but loved the outdoor play there. He surprised us several times by sitting down (outside) and eating his lunch without moving. A huge achievement for him, and us. By far the most successful day was our trip to Pleasure Island. James has always been a thrill seeker (as a four month old baby, a good way of calming him down was to turn him upside down - I guess he had a lot of proprioceptive and sensory needs even then). He spent the whole day grinning and cuddling us and Bea loved it too. Whenever we go away we always make sure there is a similar facility around for us to access.
Luckily our journey home was a lot less stressful and my pain had subsided a bit by then. We haven't decided whether we would go back and perhaps will wait until James is a bit calmer to try again. What has become clear is that we are unlikely to take any more holidays for quite some time, as it was more exhausting and stressful than staying at home. One option would be to take a carer with us, and we will definitely be considering that for any future family breaks.
So that's part of my update, and I'll add more soon!
The bottom line is that life has gone from mad chaos to, well, madder chaos! The only thing that could make our lives more hectic would be if we got a dog - luckily neither myself or my husband are dog lovers!
James managed to get through most of the last term of school uneventfully. All the winter bugs and viruses had worked their way through his system so he managed to get through a whole term without missing a day. This was a major acheivement - the first two terms, he was missing at least one day alternate weeks! I was called into school on numerous occasions which started to get embarrassing! If a qualified doctor can't decide whether he child is well enough for school, what does she do with patients?!
In May we had booked a week at The Thomas Centre - the descriptions and ethos made it sound like an ideal venue for a holiday for families like ours. It is impossible to explain how much organisation is required when going away with a child like James. He needs his routines and can't be allowed to roam freely around the house/grounds unlike other children his age. He gets bored and distracted easily so needs to have activities available to him but if he doesn't enjoy them we need to be able to leave quickly and diffuse the situation. So a holiday "village" set up specifically for families with autistic children sounds ideal doesn't it? We phoned ahead and made sure there would be stair gates (to keep him out of the kitchen) and with plenty of preparation felt we were leaving with all we'd need. But things didn't go according to plan. The first hurdle was that a week before we were due to go, I fell down the stairs at the train station and fractured my coccyx. Ouch. There is no treatment, other than rest and painkillers, so I was in agony and could barely bend for the week before we left. I wasn't relishing the idea of a five hour drive with a sore lower back, and my expectations weren't dashed! Not only was I in agony, but James found the journey very difficult and spent the majority of the time throwing things out of the car window (thankfully, not himself or his clothes!). We are now considering buying a new car with electric windows at the back!
The complex itself was lovely - there was a small childrens play area in front of the cottage, a large trampoline in the grounds, a heated swimming pool which you booked out for the family so had total privacy, a games shed with ten pin bowling and a pool table, and a play room with a piano and children's toys. Perhaps my biggest disappointment was the fact that whilst luxurious and comfortable the actual cottage wasn't geared up to a very active autistic child. We spent the first few hours "de-Jamesing" the place, putting things out of reach, moving lamps and breakables into other rooms and generally worrying about how much damage he'd do. I was surprised that this hadn't been considered when designing the place, to be honest.
The week had a lot of ups and downs. Actually, an awful lot of downs for me, but that was as much to do with my levels of pain as anything else. There were surprises - for instance James HATED his trip to the Aquarium in Hull and was indifferent to the animals at Rushmoor Park but loved the outdoor play there. He surprised us several times by sitting down (outside) and eating his lunch without moving. A huge achievement for him, and us. By far the most successful day was our trip to Pleasure Island. James has always been a thrill seeker (as a four month old baby, a good way of calming him down was to turn him upside down - I guess he had a lot of proprioceptive and sensory needs even then). He spent the whole day grinning and cuddling us and Bea loved it too. Whenever we go away we always make sure there is a similar facility around for us to access.
Luckily our journey home was a lot less stressful and my pain had subsided a bit by then. We haven't decided whether we would go back and perhaps will wait until James is a bit calmer to try again. What has become clear is that we are unlikely to take any more holidays for quite some time, as it was more exhausting and stressful than staying at home. One option would be to take a carer with us, and we will definitely be considering that for any future family breaks.
So that's part of my update, and I'll add more soon!
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