Posted in anxiety, Asperger's Syndrome, Australia, Autism, behaviour, challenging behaviour, children, diagnosis, emotions, feelings, health, life, parenting, school, special needs, support, the future, violence, tagged Asperger's Syndrome, Australia, Autism, challenging behaviour, diagnosis, Feelings, health, life, parenting, school, special needs, Tantrums, The Future on March 4, 2012 |
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So, we are off to see a Paediatrician on Friday. It’s a big day for us because despite J having an official diagnosis for 18 months, it was a diagnosis given to us in Australia. We brought back with us every piece of paperwork we had, in fact one piece of our cabin luggage was just J’s medical notes, OT Reports and even school reports, including a copy of their verification of diagnosis of ASD. Despite all of this we’ve been told that his Australian diagnosis isn’t valid in the UK and “just because he was diagnosed over there doesn’t mean that he will get the same diagnosis over here”, yeah ‘cus he suddenly became NT on his journey back to the UK!!!
I’m genuinely concerned about our appointment. You see although we are supposed to be seeing a different specialist, we have to attend Dr W’s clinic. Dr W being the “specialist” that told us there was nothing wrong with J’s behaviour and that it was all me because I was depressed! Do you see why I’m concerned? Surely if he has been diagnosed with Aspergers Syndrome / High Functioning Autism in one country, it should be a valid diagnosis in another country. But what happens if the Paediatrician we see doesn’t give us that all important UK diagnosis? Where do we go from there?
J has only been attending school here for 2 weeks and that’s only been for 10 hrs a week, having a TA (whom he likes!) with him at all times and already he’s not coping. Already they’re (the school) are missing those all important anxiety signs, the biting and sucking of his mouth and fingers, the funny noises he makes with his mouth, picking the skin off his fingers and so on. All very subtle signs but as he won’t ask for help or admit that he can’t do something or isn’t happy to do something, these are very important signs that need to be looked for. Instead he’s building his stress levels whilst at school and seen to be “coping” but then letting loose at home……….And I mean letting loose. This week I’ve once again had to seek medical attention due to an injury that J has caused me mid meltdown. I don’t know how we’re all going to cope next term when he has to start attending more hours.
At the moment we’re told because he isn’t displaying the negative behaviour at school they can’t see the need for an aide, without our official UK diagnosis he doesn’t have any hope at all of getting any help. Again as I said in my last post I understand where the school are coming from, if they don’t see it, it’s hard to believe, I get it, really I do. However I wonder if part of the problem is also their lack of understanding of Asperger’s and if maybe that’s why they’re missing the tell-tale signs that his anxiety levels are building. I’ve heard so many stories similar to ours of Aspie kids wearing a mask whilst at school, acting, “holding it together”, “coping” and then releasing when they get home from school because they’re just so exhausted and stressed. And Aspie kids, (older than J), who have missed vital parts of lessons because they have are so exhausted just trying to hold it together that they can’t possibly even attempt to take in what is being taught, it’s just too much for them. And I KNOW this is the struggle that J is dealing with.
We have a school not too far from us that specializes in all ASDs, which would be great for J. They’re specially trained professionals who would know what signs to look for, who would know how to cater for J so that he would have a better opportunity to reach his full potential, (he’s a smart kid…..really smart), but without that all important UK diagnosis he wouldn’t be able to attend.
So we’re hoping that all of our paperwork will be enough, of course the icing on the cake would be if J is having a bad day because then the Paediatrician will really get to see him full on………………Let’s hope so, without the right help and support I wonder how bad his meltdowns will get when he’s a little older and bigger and how long he’ll be able to wear the mask for before it slips. When that happens, without our UK diagnosis he’ll just be a naughty kid, whose parenting should be better.
Surely if we were given the diagnosis in Australia, we’ll get the same diagnosis here?
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Posted in anxiety, Asperger's Syndrome, Autism, behaviour, challenging behaviour, children, coping with change, emotions, family, feelings, health, life, OCD, parenting, school, special needs, support, tantrums, teach, the future, violence, tagged Asperger's Syndrome, Autism, challenging behaviour, children, Family, Feelings, health, life, OCD, parenting, school, special needs, Tantrums, The Future on March 2, 2012 |
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After contacting and visiting a few different schools in our local area we finally got J enrolled and he officially started year one last week. J is only allowed to attend for 10 hrs a week because the school want to fully assess his needs and they have managed to secure funding for a teacher aide for 10hrs per week for 6 weeks. So he’s going for 3hrs, 3 days a week and 1hr for another day. He has a lovely TA who writes in a communication book everyday, telling us what he has done etc.
The school itself doesn’t have a great deal of knowledge regarding Autism but they seem very willing to learn and have contacted outside agencies for advice. Their hands are a little tied until we get an official diagnosis from a UK doctor, (we see a peadiatrician next week), once we have that they will be able to get more help and advice. However, over the past 2 weeks they have told me how well he’s doing, what a nice boy he is etc etc and how maybe he doesn’t need the support they had originally thought. Don’t get me wrong it is great to hear them say those things about my little man but a little part of me worries that this means he won’t get the help that I know he needs.
Whilst at school J is a different child, he wears a mask. He allows his anxiety/stress levels to build throughout the day, coping in his own subtle way. For J this means biting and picking the skin off his fingers, (he has previously taken several layers off and I don’t want it to get this bad again), he bites and sucks the inside of his mouth, he makes noises with his mouth and blows his cheeks up and he plays with his hands. All very subtle and if you aren’t looking for these tell tale signs, you wouldn’t spot there was anything bothering him at all.
Unfortunately once school has finished for the day the mask is removed and he simply can’t hold it together any longer. I know he’s had a tough time over the past couple of months, moving back to the UK has been such a huge change for him to deal with but over the past couple of weeks wearing the mask has made things so much worse. J’s OCD has gone into overdrive, he’s even had his TA clean his locker at school before he would put his bag in it because it was “dirty”, he’s been insisting on a bath every night because another kid in his class might have touched him and they were “dirty”, he’s asked for his uniform to be cleaned because he’s sat on the carpet at school and it made him “dirty”, the list goes on and on…………. everything he does at the moment seems to make him “dirty”! He’s already chewed a lump in his mouth and picked the skin from his thumb, which ofcourse is now sore and bothering him.
He’s also been extremely meltdowny over the past few weeks, every little thing has set him off for hours and it just seems to be one thing after another…….. his breakfast isn’t right, he’s spilt a tiny drop of milk on the table, he doesn’t want to get dressed, I used the wrong chopping board when I made him his sandwich, he didn’t want to go to school, his shirt and jumper didn’t feel right when he sat in his car seat, the weather wasn’t “right”, his fingers and mouth hurt, someone touched him at school, another kid didn’t wash their hands after lunch, the bath wasn’t the right temperature, his Mario game didn’t do what it was supposed to do, the list goes on and on. But ofcourse this is the J that the school don’t get to see. They don’t get to see how upset my little man can get over the tiniest thing, they don’t have to try to calm the screaming, violent, tearful unco-operative child. They don’t have to do that whilst suffering from sleep deprivation because J has refused to go to bed and then not slept well once he’s finally nodded off. They don’t see us walking on eggshells because we’re so fearful of the reaction we’ll get when something isn’t “right”. They don’t share our fear when we wander just how bad it’s going to get, how he’s going to hurt himself or others.
So whilst I’m proud that J is able to “hold it together” whilst at school, I’m so fearful that this will mean that he won’t get the help and support that he so desperately needs and I’m so worried about what the future may hold for him ……………….and for all of us. *sigh*
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