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| A family outing with the kids which Joel can take part in! |
I was sad that my youngest child really didn't want to go back to school and put up a protest this morning but I wasn't sad to see him go. My kids are not particularly excited to be going back to school either which I think is a normal reaction but was slightly alarmed to hear a friend say her kids couldn't wait to get back to school and were missing school in second week of holidays !
During the Summer holidays I was banned from mentioning the 's' word (school) during the holidays from my daughter age 13 even though she came top of her year in her end of year exams (I just couldn't resist putting that in). But when you have a child with severe autism (my oldest Joely now 15) you have to celebrate anything small or big that comes your way.
I have started a few posts throughout the year for this blog and just didn't get round to finishing them. Maybe because I was in the middle of having an adolescent with autism and it really didn't seem like my number one priority and also because it's sometimes easier to stare into space when it all gets too much.
One unpublished post was about autism discrimination on public transport. Our carer who took Joel back from Cornwall last Easter was told by a fellow passenger to have him under control. Joel was going through a really bad and unsettling stage in his life. Sue rang me and cried down the phone to me from Reading and she is possibly the most experienced and best carer we've ever had. I felt awful for her as she'd had a terrible journey with Joel and then been chastised for his behaviour. He'd been on the wrong medication and actually changed from his generally laid back personality to a young man possessed in the space of a few months. So we could no longer expect him to sit in a car without pulling the drivers hair or leave him alone with his younger brother Max (age 8) without him trying to attack him. We actually couldn't take him anywhere other than home where we knew he was safe. Joel was so unhappy for quite a few months earlier this year it was distressing to see and I knew he was on the wrong medication and demanded he come off it and changed psychiatrists after this as the previous dinosaur didn't seem to take on my concerns after the first few months Joel was on these meds. In fact he did the opposite and put up Joel's dosage and this made Joel worse. After seeing Joel's new psychiatrist through the local CAHMS (Child and Adolescent Mental Health Services) department I was relieved that I was listened to and treated like a normal human being and not some robot going through the system. Joel is one of these kids where if it says on the box all the good things he will have the small percentage of really not so good things on the 'side effects' list. The dinosaur doc did actually admit that all of Joel's behaviours and symptoms were side effects which do happen in a small number of cases.
So you'll be glad to hear Joel is back to his normal self after coming off the meds a few months back and has just come back from Cornwall where it was noted by extended members of the family that Joely was happy and back to the Joely we all know and love. Enjoying tickles, swimming in the sea and generally being squashed by his dad. (some autistic people like the heavy weight on them as they get what's called 'feedback' for their body in space - its's called proprioception or something like that and I'm not very good at explaining the technical term so apologies for that).
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| Joely at his favourite holiday location at Granny's house |
So you'll be glad to hear Joel is back to his normal self after coming off the meds a few months back and has just come back from Cornwall where it was noted by extended members of the family that Joely was happy and back to the Joely we all know and love. Enjoying tickles, swimming in the sea and generally being squashed by his dad. (some autistic people like the heavy weight on them as they get what's called 'feedback' for their body in space - its's called proprioception or something like that and I'm not very good at explaining the technical term so apologies for that).
I did start another post called 'Autism, Shaving and Lego'. That was back in March so Joel needed his first shave age 14 as he was developing a very wispy moustache so dad shaved it with an electric shaver and this was another ground breaking experience! Joely was quite happy to be shaved by his dad but the wispy moustache has turned up again and it's something I haven't discussed with his carers where he resides yet. There has been enough day to day stuff to talk about with them including his shoe size (10) and height which I'd say is 5'9" now so he needs new school clothes and new clothes in general. Graham his key worker said he's going to take him to Sports direct so that he can choose a pair of trainers. I have also bought him some cool tops going on what I think cool boys of 15 might wear because Joel is not bothered by anything he wears. For this reason alone I think that makes Joel extremely cool.
I've spent the year looking at school and residential settings for him and happy to say he's staying in his current residential setting now until he's 18 and he has an amazing garden to play in and goes on day trips to Brighton, goes climbing, riding, swimming and has music therapy lessons there. He's also changing schools and going to St Pier's in Lingfield from January which also has a college so hoping he'll stay there til he's 25. It has 66 acres and a farm and lots of great facilities so I feel blessed he's been offered a place. They are geared up to help with adolescents too and this is what he needs. There are also male role models there which he doesn't have in his current school where all his teachers and TA's are female. Joely does relate to males especially his father and I know this will also benefit him.
There are a million things you can do on Summer holidays with kids if you a) have the budget and b) don't have a huge budget and are resourceful and can think up things like going for walks in parks/countryside... and public libraries can be helpful for up to an hour in my case. Some art galleries are free too and theatre in London in August with kids is cheaper apparently but I've never managed to get there then. Usually because having a child/teenager with autism it's virtually impossible for us as a family to do any of these things other than the walk in countryside away from other human beings because Joel usually finds mud of some description and manages to get it all over himself and anyone around him. This isn't a good look for him or others. He also tends to strip all his clothes off if we go near a local lake and has no inhibitions about his naked body and leaps into the water skinny dipping and embarrassing his sister so that she goes to hide in a bush somewhere while passers by are looking in bemusement. So apart from going for countryside walks and swimming at home we don't really go out to family entertainment places. We did try this year to take Joel to the Natural History Museum in London and got up there on a smelly old bus where the driver played Radio Gold which must have seriously upset Joel's music tastes because he threw his ipad at the driver with a near miss thankfully. Not an easy bus trip. Not an easy museum trip either. Joel lay on the floor in the museum right by the main staircase and refused to go anywhere. Luckily the carer Sue managed to scoop him up and take him to Hyde Park where he was fine wandering about the park looking at the lake and enjoying a cup of tea at the cafe. Which meant we could take Holly and Max around the museums and do a 'normal' family activity. If we hadn't brought a carer with us this family outing would have to have been cancelled. So I can understand the isolation that families feel who have severely disabled kids and we were blessed to have Sue with us.
Joel's annual trip to Cornwall was happier for us this year as it was shorter and more manageable and Sue took him back to Sussexon the train and there were no complaints so at least that was better. We usually take him to the beach and he loves swimming in the sea so this is another activity we can do with Joel as a family. This year I decided to try something new and thought as a family outing we could try the water sport where you all lie on an inflatable called a pancake which is tied to the back of a boat and then get flung around in an estuary for about half an hour. Well even though I didn't know what to expect with this new activity I was blown away by Joel laughing solidly for half an hour. That was worth all the tea in China to hear that and was the best day of the year for me to be surrounded by my boys clinging on to a handle on this pancake and giggling away! So this is going to be a regular family trip and Holly was thrilled to see her big brother so happy for such a long period of time which made the whole experience so worthwhile.
Going on a family holiday to Cornwall is usually on a Cornish beach in wetsuits in cold and windy weather eating soggy sandwiches but Joel doesn't mind as long as he can get in the sea.
One totally random line I heard from a lady speaking to her husband/partner walking up the cliffs with their little children in tow were 'darling we must get some lettuce for our lobster sandwiches'. Now that's when you know you're in the 'golden triangle' of North Cornwall where David Cameron and Gordon Ramsay reside.
In the time Joel stayed at his Grandmothers I left Sue the carer to look after him while we took Max to our usual A and E excursion (we always end up there for something with one of them ). This time it was about Max's mosquito bites he'd had in Spain which had become infected on his leg. So we got some antibiotics and two hours later we were back in the village where we stay and saw Joel sitting on the bench outside the local postoffice/village store chomping on a big bar of Cadbury's chocolate having got through a whole bag of wine gums. I quickly got out of the car to check if Sue was with him and had a puzzled Shirley behind the counter who's about 80 something. I said is anyone with Joel? She said no there wasn't to which I replied 'how much do I owe you Shirley?' and she told me what Joel had taken from her store. So after paying two bags of wine gums and two chocolate bars worth later we took Joel home to a frantic Sue. It only takes a few seconds with Joel and he can bolt if he knows his way out of somewhere and he certainly knew how to take himself off to the village store within minutes! I happy ending to a nerve wracking afternoon. Thankfully he hadn't travelled any further and looked very relaxed on the bench with discarded sweet wrappers all around him.
So for all the parents missing your darlings now they're back at school and for all those secretly happy they are back and not really missing them; I was relieved to hear I'm not really alone in the check out in M and S when I was buying Max's school trouser's yesterday along with lots of chocolate. I made polite chit chat as you do to the friendly check out lady saying the school holidays were nearly over and that I was in need of chocolate and she said she'd seen a lot of stressed mums going through the cashier with school uniform and lots of wine! I am not alone; you know who you are.
There are a million things you can do on Summer holidays with kids if you a) have the budget and b) don't have a huge budget and are resourceful and can think up things like going for walks in parks/countryside... and public libraries can be helpful for up to an hour in my case. Some art galleries are free too and theatre in London in August with kids is cheaper apparently but I've never managed to get there then. Usually because having a child/teenager with autism it's virtually impossible for us as a family to do any of these things other than the walk in countryside away from other human beings because Joel usually finds mud of some description and manages to get it all over himself and anyone around him. This isn't a good look for him or others. He also tends to strip all his clothes off if we go near a local lake and has no inhibitions about his naked body and leaps into the water skinny dipping and embarrassing his sister so that she goes to hide in a bush somewhere while passers by are looking in bemusement. So apart from going for countryside walks and swimming at home we don't really go out to family entertainment places. We did try this year to take Joel to the Natural History Museum in London and got up there on a smelly old bus where the driver played Radio Gold which must have seriously upset Joel's music tastes because he threw his ipad at the driver with a near miss thankfully. Not an easy bus trip. Not an easy museum trip either. Joel lay on the floor in the museum right by the main staircase and refused to go anywhere. Luckily the carer Sue managed to scoop him up and take him to Hyde Park where he was fine wandering about the park looking at the lake and enjoying a cup of tea at the cafe. Which meant we could take Holly and Max around the museums and do a 'normal' family activity. If we hadn't brought a carer with us this family outing would have to have been cancelled. So I can understand the isolation that families feel who have severely disabled kids and we were blessed to have Sue with us.
Joel's annual trip to Cornwall was happier for us this year as it was shorter and more manageable and Sue took him back to Sussexon the train and there were no complaints so at least that was better. We usually take him to the beach and he loves swimming in the sea so this is another activity we can do with Joel as a family. This year I decided to try something new and thought as a family outing we could try the water sport where you all lie on an inflatable called a pancake which is tied to the back of a boat and then get flung around in an estuary for about half an hour. Well even though I didn't know what to expect with this new activity I was blown away by Joel laughing solidly for half an hour. That was worth all the tea in China to hear that and was the best day of the year for me to be surrounded by my boys clinging on to a handle on this pancake and giggling away! So this is going to be a regular family trip and Holly was thrilled to see her big brother so happy for such a long period of time which made the whole experience so worthwhile.
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| Joely and I on the pancake -he does tend to have his hands in his ears if he isn't normally wearing his ear defenders as most things in life are too noisy for him but we didn't take them on this occasion. |
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| The Pancake experience |
Going on a family holiday to Cornwall is usually on a Cornish beach in wetsuits in cold and windy weather eating soggy sandwiches but Joel doesn't mind as long as he can get in the sea.
One totally random line I heard from a lady speaking to her husband/partner walking up the cliffs with their little children in tow were 'darling we must get some lettuce for our lobster sandwiches'. Now that's when you know you're in the 'golden triangle' of North Cornwall where David Cameron and Gordon Ramsay reside.
In the time Joel stayed at his Grandmothers I left Sue the carer to look after him while we took Max to our usual A and E excursion (we always end up there for something with one of them ). This time it was about Max's mosquito bites he'd had in Spain which had become infected on his leg. So we got some antibiotics and two hours later we were back in the village where we stay and saw Joel sitting on the bench outside the local postoffice/village store chomping on a big bar of Cadbury's chocolate having got through a whole bag of wine gums. I quickly got out of the car to check if Sue was with him and had a puzzled Shirley behind the counter who's about 80 something. I said is anyone with Joel? She said no there wasn't to which I replied 'how much do I owe you Shirley?' and she told me what Joel had taken from her store. So after paying two bags of wine gums and two chocolate bars worth later we took Joel home to a frantic Sue. It only takes a few seconds with Joel and he can bolt if he knows his way out of somewhere and he certainly knew how to take himself off to the village store within minutes! I happy ending to a nerve wracking afternoon. Thankfully he hadn't travelled any further and looked very relaxed on the bench with discarded sweet wrappers all around him.
So for all the parents missing your darlings now they're back at school and for all those secretly happy they are back and not really missing them; I was relieved to hear I'm not really alone in the check out in M and S when I was buying Max's school trouser's yesterday along with lots of chocolate. I made polite chit chat as you do to the friendly check out lady saying the school holidays were nearly over and that I was in need of chocolate and she said she'd seen a lot of stressed mums going through the cashier with school uniform and lots of wine! I am not alone; you know who you are.
