Archive for the ‘life’ Category

Coffee……………….is there any other way to start the day?

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Today’s Photo A Day Challenge for November is Colour.

Autumn has always been my favourite season, despite the cold! And let’s face it, it has definitely gotten COLD!

The thing that makes me love Autumn so much is the colour, I love Autumn colours. Reds, Oranges, Yellows, Browns, Greens…………And that’s just the trees!

So I thought I’d share some Autumn colours……………..

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So as a way of getting back into blogging I thought I’d have another go at Fat Mum Slim’s photo a day challenge.

To begin the challenge, today’s photo a day challenge is Something Beginning With ‘C’…………….

J has developed abit of a fascination with castles recently thanks to a certain computer game character that goes by the name of Bowser. So we’ve had a couple of days out recently visiting  a few different castles. We’ve had great fun together walking around some of England’s great history. J has loved climbing to the top of the castle walls and towers and has taken in alot of facts about each castle that we’ve visited.

As well as learning abit of history, visiting the castles have been fun family days out, that I’d recommend to anyone. :)

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It’s been a while yet again since I posted last. We’ve been trying to deal with our “situation” at the minute.

Our “situation” is this…………We are still waiting for Hubby to see a specialist regarding his back, in fact we are still waiting for an appointment. Seriously, I cannot believe just how slow the NHS is. Until he has seen the specialist and gotten some answers we’re stuck in limbo. We need to know if they are going to do anything to fix the problem at all or if there is nothing they will do. Either way once we get some answers we can move on with our lives, make plans etc……..

Our housing situation hasn’t changed and we’ve had no luck finding another house to rent, so again we’re stuck.

However our biggest source of stress has without a doubt been school issues! It’s just been one problem after another and has now gotten so bad that there is almost no communication between us and them. That said at the moment I think no communication between us and them would be better than what we have right now. 2 weeks ago they ambushed us, they tried tricking us into coming to “parents evening” during school time and with the Head attending too……………..I know alarm bells were ringing in our heads too! Turns out we were right to query the “parents evening”, it turned out to be a complete ambush. The Head and J’s Teacher were waiting to question us and at times (it felt like) attack us. We had an ESCO meeting booked for this week, (which has now taken place) and so we weren’t willing at that time to go through all of their issues right then So told them that we would discuss things with our support worker and then everything could be discussed at the ESCO meeting, as it supposed to happen. They wouldn’t accept that and continued with their “discussion” until time ran out for them.

During the ambush we asked if the school would be applying for a statement yet. This was brought up again in the ESCO meeting. We were told that there was no point applying yet because school don’t see his need for support yet, they say he isn’t displaying any of the anxiety or behaviour that we see at home, at school.

We asked if J would have an IEP whilst at the ambush, suddenly at the ESCO meeting they pulled out a piece of paper that they claimed was his IEP. It wasn’t an IEP it was a piece of paper so that they could claim at an official meeting that it had been done. After raising the point that we’d had no input at all with it we were told to arrange a meeting to discuss what they had decided. We had our proper Parent’s Evening last night, please don’t even get me started on that or how rude his teacher is. We were told during parent’s evening that we had to meet after school to discuss the IEP that they had done (seriously not worth the paper it’s written on), and we were to bring J to the meeting too. WTF!! No we’ve asked for a proper IEP meeting ‘cus we’re getting more than a little frustrated with the school’s bullying antics. Anyway after talking with our support worker and discussing things together we’ve decided to tell the school to do whatever the hell they want, there isn’t much point having another meeting to allow them to try to bully us again, when they’re going to do whatever it is they want to do anyway.

J’s current teacher is arrogant, ignorant, rude and makes it very obvious that she just doesn’t like us. Quite frankly I don’t care whether she likes us or not, ‘cus to be honest I can’t stand the woman but how she feels about us should not impact on how J is treated in school. Everything we say, Every concern we bring up, Everytime J opens up and tells us something which we pass on simply gets ignored, brushed under the carpet and forgotten. It’s about time they started dealing with some of the issues.

As I’ve said before we have some concerns that J is being bullied. The latest injury that he came home from school with was marks and bruises up his back because (as he told us) someone punched him lots of times. The school’s response was “it’s normal for 6 yr olds”…………. This week he gave us a name which we passed on during the ESCO meeting, school’s response wasn’t we’ll keep an eye on it, oh no, we were told “if you knew **** you would know he wasn’t capable of hurting anyone”……….Really well guess what, J doesn’t lie and him giving us a name was a big deal so maybe they should keep that in mind and actually keep an eye on the situation to see if the child in question is bullying him before J decides he will take no more and hits back!

We’ve got so many issues going on with school at the moment, it’s crazy and our frustration levels are at an all time high. So right now no communication would probably be better than what we have now because I’m not sure how much more we can put up with until we have a complete breakdown with them.

Right now we need some answers from the specialists regarding hubby’s back. Once we get those answers we’ve got a plan, we know what we’re going to do. Until we get those answers we’re stuck no knowing what to do for the best, we’re stuck living in a place where we don’t want to be, we’re stuck with the red tape that this country uses for everything, we’re stuck with the frustration and our poor boy is stuck in an education system that refuses to recognise his needs and support him.

Ok I’m going to sign off now, I’ve got so much to write about but I’m feeling so frustrated right now so I’d best stop now. Sorry for “going on”, if you’ve got to the end of this post, thanks for sticking with it. I’ll try to be abit more upbeat in my next post.

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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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