Archive for the ‘life’ Category

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Asperger’s Syndrome is known as an invisible disability and generally speaking from a personal point of view there is a part of it that is. However when I look at my son sometimes I wonder how much of what he does is really invisible, how much of his disability is really invisible. Is his disability really invisible or simply misunderstood or ignored?

J has extremely high anxiety levels. He shows his anxiety via his OCD. He panics with every tiny bit of dirt that touches him or is near him, he asks us, “Do you promise I’m not dirty now,” quite literally more than 50 times a day. He washes his hands constantly, I mean constantly, he’s actually got really sore hands at the moment, his knuckles have all cracked and even started to bleed due to him washing them so often. Sometimes he just refuses to touch things or go near things because he thinks they’re dirty or “germy”. Germy is his new word, his new phobia………………and ofcourse anything at all related to school is school germy. He’s been told by someone , (I don’t know who but I’m guessing it was someone at school because it wasn’t us and he doesn’t see anyone else), that some germs can make you very ill and so he now thinks that if he gets dirty or “germy” he’ll be poorly or could even die!

Another sign that J’s anxiety levels are rising is his chewing, bouncing, flapping and random one or two word answers/sentences. He chews toys, his fingers (another reason why they get sore), clothes and the inside of his mouth. He gets a fair few mouth ulcers due to his chewing. His bouncing and flapping can be due to excitement as well as anxiety however you can usually tell which it is by assessing the situation he’s/your currently in. For example if he was bouncing and flapping down a beach it’s kinda obvious that it’s excitement………..see what I mean?  And his speech can become quite sporadic, he can  randomly say just a word or two, sometimes he’ll make a statement of some sort, again that’s completely random and often if he’s asked questions when he’s anxious he’ll give just one or 2 word answers…………usually yes or no.  Ofcourse when those anxiety levels boil over J often has violent outbursts. :(

J has a social disability. For J, as a 6 yr old child this means he struggles in social situations. He doesn’t have any friends at school, although he’ll play with whoever will play his games with him at playtime. He doesn’t understand why other kids don’t want to play his game everyday, he doesn’t understand that with friendship there has to be give and take and sometimes he has to play the games of others and sometimes he’s going to lose. He came home from school last week on 2 separate occasions with minor injuries that other children had done (a whole other post!), and said that another child had accidentally punched him etc because he doesn’t understand that it’s wrong for someone to do that. He does however understand that he can’t hit back because it’s against the school rules to hit back. He just quite simply doesn’t understand how to “act” in and respond to some social situations.

J has a communication disability. I think the level of his communication disability is often misunderstood. J has excellent language skills, he uses words in his speech that children his age usually wouldn’t use, words that older children or even adults would use. He understands what most “big words” mean, for example at 3 he told his preschool teachers that they were ignorant because they didn’t listen to him. He can read almost everything that’s put in front of him, (provided it’s of interest to him). However J is incredibly literal, he doesn’t understand sarcasm, metaphors or at times even the words that are said to him and interprets them in his own way. This is the same with the written word, the school rules are a good example of this. One of the school rules that are written down and displayed throughout the school states once you are outside you must stay outside. So the majority of children would tell someone if they need to go in to go to the toilet or to get a tissue for example or they would just go in and then return to the playground but not J. If he needs the toilet and is already outside he won’t go back inside, instead he’ll hold it in and wait until he comes home or until the next playtime (if he remembers before he goes outside), because the rules say once outside, stay outside! When people say things to him or make suggestions to him he takes them as instructions, things he has to do. For example if a teacher suggests he try eating his apple peel rather than throwing it away, his understanding of that was I can’t eat apple at school anymore because I have to eat the peel and I don’t like it, so I simply can’t eat it anymore! He’s extremely fearful of getting into trouble at school and getting “told off” by his teachers and so he struggles to tell them if he doesn’t like something or if he can’t do something etc and due to this fear and lack of trust in his teachers, he releases those fears when he gets home. He tells us that he had to do something (handwriting is a biggy!) even though it hurt his hands or he didn’t know what he was supposed to do and when we ask him if he told his teacher this, he responds with “I couldn’t, I just had to do it or I’ll get in trouble!”

J also has difficulty at times processing what has been said to him. Often if something isn’t said directly to him, he doesn’t understand that he is being spoken to and may need instructions etc repeated. Often if there is alot of other things going on around him he struggles to focus on what is being said to him because unlike you or I, he can’t automatically block everything else out and focus on just that one person speaking.

I could go on and on. The point I’m trying to make is yes, Asperger’s Syndrome is a hidden disability but invisible? I don’t think it’s an invisible disability, some of his difficulties are hard to spot, hidden even but alot of his difficulties and how he displays them are so visible it shocks me that people (and I’m directing this at schools, you know those people who are supposed to educate our children!) can be so blind to them. So I’m left asking is it really an invisible disability or are Aspie needs just ignored and misunderstood?

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Am I relieved or sad? It’s a question I’m asking myself today.

Today was supposed to be J’s sports day, his school have decided to hold it in September rather than next Summer?!?!

Anyway due to the rain it’s been cancelled but I’m not sure if I’m sad or relieved. Last year at J’s sports day/carnival he struggled with most of the events but the school had a few children who like J had additional needs and at the end of the day they put all of these children in their own running race to give them a fair chance at winning a ribbon. J came joint third and was very proud of himself. Had he been racing against the other children in his class that didn’t have any additional needs this probably wouldn’t have happened. J loves running and jumping, in fact he has great difficulty staying still, however the only time he is ever able to run fast is when he’s trying to escape. This presents 2 problems, the first being that he would struggle to keep up with the other children and the second being, J does not like to lose.

This year J tells us that he is to compete in the 50m hurdles and a relay race. So I’m not sure if I’m relieved or sad that it’s been cancelled. Relieved because if he doesn’t come 1st, 2nd or 3rd, I don’t know how he will react. I know he’ll be upset, 1st, 2nd and 3rd place children will receive a gold, silver or bronze award and I know he’d be gutted if he didn’t receive one of those. But I’m sad because we won’t get to cheer him on, we won’t be able to get it all over and done with and we won’t get to celebrate him doing his best (I have our own certificate all ready to print, just in case he doesn’t get an award/certificate).

I know it’s great to celebrate our children winning but what about all of those other children? The children whom despite trying their absolute best they just can’t keep up with the rest of the children, the ones that never win the gold silver or bronze. I wonder how they feel when their efforts don’t get rewarded and how much of a bashing their confidence takes. Why can’t schools celebrate the effort of all the children, even a small gesture such as a certificate congratulating them on their efforts would be appreciated.

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I attended a curriculum evening at J’s school yesterday. It was as I expected full of useless information but I also discovered some things that J is going to struggle with. I can’t get into all of our school issues right now, there’s far too many and instead of wasting my breath arguing with them constantly and then the school not listening we’ve decided to talk to our support worker with the ESCO team and then let her deal with the school……………………..You never know maybe eventually they’ll listen to another professional rather than the people who know J best!

Anyhow one of the things I discovered was that his class may be going on a little trip to the supermarket next door to the school! His teacher (whom I have major issues with!!) explained to myself and all of the other parents that had attended the evening, that all of the children love it, it’s a popular trip, they all love the shopping experience, yadda yadda yadda………………. Can you imagine anything worse for a child with sensory needs like J?!?!

Not only will he have to deal with the anxiety of being at school but he’s also going to have to “cope” with a supermarket trip too! Supermarkets are sensory hell for a child like J and he doesn’t “cope” brilliantly with them. Once he managed to work out a way of dealing with the lights and sounds in the supermarket, he’ll have to try to concentrate and listen on what his teacher is saying/instructing the class. Then there’s the other people in the supermarket, which in all honesty is J’s biggest issue with supermarkets. Some people (not to be rude) have a very strong smell, some wear strong perfume/aftershave, some may carry something in a bag that doesn’t have a strong smell but to someone who has an amplified sense of smell it can be overwhelming. And another reason we try to avoid supermarkets with J is when they are busy, (which they so often are), people can often accidentally brush past you, however this can feel very different to a person with sensory needs. J is a child who likes to touch things, likes deep pressure, has a high pain threshold and often doesn’t notice when he bumps himself, however if someone brushes past him, that kind of touch can and has completely freaked him out, the result of which has been a sensory meltdown. I worry not only how he is going to deal with the trip but also how will the school/teacher who doesn’t have a clue about J or ASDs, deal with J if he should have a sensory meltdown and how would the rest of his class react.

I’m sure the trip is lots of fun for the majority of the children in the class but the school need to understand that not all children will and need to be prepared for what could happen, whether they “believe” it or not they have a child on the spectrum in their school who has sensory needs that need to be dealt with and supported!

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It’s been a while since I posted. It’s been a long summer of highs and lows and we’ve been very busy.

At the start of the Summer holidays I had surgery on my right hand, nothing serious, I have Carpal Tunnel in both hands and so had surgery to relieve it. This meant I was unable to use my right hand for 3 weeks and then had to slowly regain use of it, It’s still quite painful around the area now but the scar is only just visible.  It’s been hard work just doing some basic things (such as washing and dressing), and I’ve been really surprised at how much I rely on the use of my hands.

We renewed our Australian visas during the Summer. We discovered that they had just expired and so spoke to a very helpful person at Australia House who informed us that we could apply for a Resident Return Visa, which ofcourse we did. Our visas are valid for another 5 years, we were gutted to leave Australia in January and so by renewing our visas we might be able to return at some point over the next 5 years.

We opted for several days out over the Summer rather than a short holiday. J and I had a couple of days out with my wonderful friend Supersingle mum and her girls (one of which is J’s best (and only) friend here in England). We went to Wickstead Park, which is a small family fun/theme park and also went to the Yorkshire Wildlife Park. J enjoyed both days although was a little disappointed with the wildlife park. In his opinion there wasn’t enough animal interaction, I guess Australia Zoo is difficult to live up to.



We also had a few family days out, just my Hubby, J and I. We took J to Duxford Imperial War Museum, Cadbury World and ofcourse to the Seaside. He had great fun, in fact he had so much fun all trips were meltdown free!!! He loved looking at everything at Duxford and going to the Sealife centre whilst at the seaside but he was especially impressed with the cups of melted chocolate that he got to sample at Cadbury World. :) And ofcourse we’ve had numerous trips to feed the ducks!

Our housing situation hasn’t gotten any better over the Summer either. We applied to our local council for housing, ticking all the boxes for Housing Associations etc  (as most homes are now with Housing Associations) and so far we have been offered 2 retirement bungalows. Neither were suitable for a family let alone a family with a child that has J’s needs and were both just about big enough for a retired couple, however due to us refusing them our local council have put our housing application on hold for 6 months. Therefore we are stuck living in a house that we don’t really want to be in but it was the only house available to rent when we first arrived back in England. (It’s very hard to rent a house here when you’re previous landlord and references are in a different country!)

And after having a fairly good and relaxed Summer, (other than the housing situation and the surgery), J went back to school 2 weeks ago. He’s already had a week off sick and although he didn’t like feeling so full of cold and coughing, he didn’t mind being off school and was gutted to go back yesterday. Things have already gone from bad to worse since going back and J declared as soon as he exited the school grounds that he’s “had a horrid day!” However then shutdown and couldn’t tell us why! To be honest I have given up almost all hope of communication between the school and ourselves ever working and it feels like they simply don’t want to help/support and that maybe it’s just too much trouble for them. Our ESCO support worker is currently on holiday and we don’t have our next meeting with her, the school and other professionals until next month. We also don’t have our next appointment with the community Paediatrician until next month either and so until then we all just have to bide our time and just try our best to make it through each day. To be honest the nights are becoming harder than the days at the minute, as well as the usual fun and games at bedtimes, J has started to have Night Terrors. He’s been waking up between 3 and 7 times a night, screaming, shouting, panicking, violently shaking, rambling and (it looks like) trying to get something off him. Ofcourse by morning despite us all being a little more tired than usual he has no knowledge of any of his “awakenings”. Not sure what’s suddenly caused them or how to deal with them either but I’m sure we’ll work something out soon.

So that’s it, obviously there’s been lots of other “stuff” but this has been our Summer of highs and lows. As we make our way through Autumn we’re looking forward to trying to work our way through “stuff”, work our way towards Christmas (not too long now!!) and getting out of our rut.

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18 Months ago our world turned upside down……………………and we’re still trying to get things the right way up *sigh*

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