The Post You Write When You Have So Much To Write About, You Just Don’t Know What To Write………….

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 It Really An Invisible Disability?

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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The Worst School Trip Ever For A Child With Autism/Sensory Needs

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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Just When You Thought It Couldn’t Get Any Worse…………..I Wanted To Cry!

Yesterday I was filled with hope……………… Hope that things couldn’t get any worse right? I mean, we’ve had a pretty tough 18 months but the last 6 months things have gone from bad to worse.

We were forced to come back to the UK, there was nothing else we could do (although looking back now I kinda wish we’d pitched a tent in a friend’s backyard and stuck it out n Oz!). Relationships have changed with family and friends, not just because we’d been away for almost 2 years but also because some don’t know and can’t “deal” with J’s behaviour and I just can’t be bothered to deal with them. That might sound harsh but I’m being honest, we’ve got alot going on at the moment which has and is causing alot of stress and I don’t have the energy to deal with those people. We have housing issues which I won’t get into right now but they are causing us alot of stress right now. We’ve had various tests done regarding our recurrent miscarriages and have been told that we may be referred to a specialist in London. Hubby is still seeing specialists regarding his back and I don’t think I could explain how desperate he is to get it fixed and to get back to work. I’m seeing a surgeon this month due to my Carpal Tunnel. We’re still waiting to see the Peadiatrician in order to get J’s all important UK diagnosis, cause obviously all the specialists he saw in Oz didn’t know what they were talking about and we’ve just wasted.

However the biggest cause of stress this year has been school! Ok so J has always had school issues and I’m pretty sure he’ll always have issues with school but this year (and he’s only been there for 4 months!) has made last years school related issues look not so bad! He’s not wanted to go, (I know nothing new there right?), he’s become so anxious about school that he worried himself sick and so had to have the last day of last term off because he simply couldn’t cope! He’s both expressed his anxieties with negative (and sometimes violent) behaviour and has completely shutdown. It takes almost 2 hrs each and every school night to convince him to get into bed due to his anxieties about school the next morning. The school really doesn’t understand Autism and in all fairness we knew this when we chose it but they did seem like they wanted to help and said all the right things etc……… ofcourse not much of those things have happened *sigh*  His current teacher really doesn’t understand Autism or J, she and a TA have attended a course about Autism but neither seem to have gotten much out of it, they say they never see any ASD or anxiety behaviours at school, so obviously they don’t see him flapping, constantly bouncing,  the literal thinking, the chewing of gaping holes in his mouth, the dirty issues he has or the lost look in his eyes. And his TA has even said to me “To be honest I don’t treat him any different, I don’t make any allowances, I don’t see the point!”……… yep those were her actual words!!!

But yesterday we met what will be J’s teacher from September. It was awful, she left us feeling that not only does she not believe in ASD but she also doesn’t want to! Some of her comments included “All parents find it hard the first time round” (she actually said this one twice) and ofcourse the comment that all parents hate “All children do that, it’s normal for children his age!” She actually made his current teacher look like she understood and was supportive!! It was so bad that I wanted to scream when we left and very nearly cried. So now we’re stuck, we can’t simply change school due to our housing situation (long story) but we have serious concerns about sending him back to his current school in September with that teacher!

Just gotta hope we can sort things out over the Summer holidays I guess………..and if we can’t, who knows what we’re going to do

 

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I’m Predicting More Stormy Skies To Come This Wordless Wednesday

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Autism, Anxiety and Worrying Yourself Sick

I’m wondering is it possible to worry yourself sick?

J has had a rough time recently, he’s had to deal with everything that been happening at home, (although he doesn’t know the full story, he’s still had to deal with it), but he’s also had to deal with his biggest anxiety………. SCHOOL!

We had a great weekend last week and both bedtimes lasted for less than an hour…………….the Sunday night happened and every bedtime since then has been pretty hard going.

This has been a tough week for him at school. Monday he went to his first proper planned assembly/worship. Not only was this a huge thing but even before going there he had to deal with a big change……….. Every morning J has been dropped off at the school’s reception and taken through to his classroom, on Monday he had leave 1/2 an hour earlier so putting his morning routine out and then he had to go into school through another entrance, straight from the playground into the classroom. Now I know to alot of parents this might not seem like a big deal but parents of ASD children will know this was huge………..really HUGE and alot of change all at once for him to deal with.  He seemed to deal with it “ok” but by bedtime he was showing signs that he wasn’t “dealing with it” quite as well as I’d thought.

Then on Wednesday he went in early again this time to have some one on one time with his teacher whilst the rest of the school were in assembly. Again he went in early, and through the door he usually exits school. However this time he had been promised that he wouldn’t have to go to assembly…………………………the first thing he reveals to me when I pick him up that afternoon is “And I did have to go to assembly so you and Mrs H lied to me!” He wasn’t happy about it! What had actually happened was he and his teacher had taken his class to assembly, where he had sat with them for a few minutes and then once they were all settled J and his teacher returned to the classroom for their 1:1 time. Ofcourse he wasn’t happy, he had been promised that he wouldn’t have to go to assembly and then he had been taken to assembly, despite not having to stay ……………. I can see why he thinks we lied. *sigh*.

When I picked him up from school on Wednesday we were also informed that his teacher would not be in school the following morning and that J would have a supply teacher for his 2 hrs at school. Sometimes I wonder what some people must think I mean when I say he needs to have prior notice of changes. Ok, so I know some can’t be helped, people get sick etc but she was going on a course. I just don’t understand why they couldn’t have said something earlier in the week, instead we had almost no notice. J had a really tough bedtime and then morning. Yesterday he had a huge meltdown claiming to be dirty (which is part OCD and a huge part a way of showing his anxiety), he had tears, yelling, constant asking if he or the things he touched were dirty and then refused to touch anything, he sat on the bottom step with his hands in the air. (In fact, thinking about it, his “dirty” quirk has been a little overboard all week!)  A few times before leaving for school he asked “what if the supply teacher doesn’t know that I’m not having lunch at school and doesn’t let me come home?” and “What if the supply teacher makes  me do something that I can’t do?” and …………..well you get the picture.

Today it’s the schools Jubilee Party. This should be a fun thing but for a kid on the spectrum it can be hell! His first panic was clothes…………. the children have been asked to wear red, white and blue…………. J’s first response, “but my school uniform isn’t red!” (he wears a blue jumper and a white t-shirt) and then “I can’t wear my clothes, I have to wear my school uniform!” after we tried to explain he could were whatever clothes he wanted to school just for one day. After several conversations we gave up and told him he could just wear his school uniform and red boxers One problem solved, we thought. Next worry was food. The party will be after lunch and there will be sandwiches and ice lollies…………. J’s response “But I don’t like ice lollies and we have to eat them Mrs H said everyone will be having them!” And “What if they have dirty hands when they make the sandwiches? They’ll (the school) get cross with me if I don’t eat them!”  Convinced his teacher to tell him he doesn’t have to eat anything if he doesn’t want to. I thought problem 2 was solved, now I’m not so sure. Next problem, “What if it’s too loud or if someone touches me?” …………………. ok the issues regarding today have gone on and on this week.

However last night he suddenly became ill. Coughing and saying his head hurt. He was awake several times through the night and then up at extra early this morning but just seemed very lethargic and lay on the sofa for the first hour of his day. He did however mention school several times too, asking if he had to go, if he was too sick to go, if the party would make him feel “more poorly” etc etc…….So I’m wondering is he really sick or has he made himself sick with anxiety. He had a temperature and you can’t fake that ………… right? …………… I don’t know but I’m wondering. He has had a really tough week with alot of changes and alot of “stuff” so I really am wondering if he’s worried himself sick. He has made himself  sick with worry before, again over school so I just don’t know.

Anyhow as it’s the last day of this half term and most of the day is the party so I’ve decided to keep him home, hopefully he’ll relax a little over the next week and start to feel a little better.

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Handwriting And Homework Struggles with Autism

I know alot of children struggle with homework but when you throw in abit of Autism and you have a big problem………….well in the mumtoJ house you do anyway.

J has low muscle tone and really struggles with handwriting. He tires easily and complains that his hand hurts. So handwriting is quite a big issue for J. We’ve been working on that and strengthening his muscles by drawing mario characters and writing their names underneath, making playdough models of Moshi Monsters, writing in shaving foam, using theraputty and squeezy stress balls and so on. The key has been to use and do things that are interesting to him.

Until recently I wasn’t too worried about his reading and writing skills, we had previously been told by his teachers in Australia that he was a great reader and we’ve read to him since he was born, he’s always had books in his life. In fact at times when I’ve read his stories to him, he’s corrected me when I’ve missed a word out or said something different. So I wasn’t too worried I had thought “yes he struggles with his handwriting but that was because of his low muscle tone however he knows all of his letters and can read well”.

Recently his teacher here in England has told us that J is struggling with his phonics and he was sent home from school at the end of term with some homework to complete over the school holidays. He had around 20 words to read and then has to write a sentence for each word………..Over the past 2 weeks I’ve managed to get J to write 6 sentences and I have a feeling that he won’t complete his homework by Wednesday, when he returns to school. This homework has actually highlighted to me just how blind I’ve been. I’ve been shocked at how much of a struggle reading the words he’s been given has been for him. J is very literal and I hadn’t realized that this would have an impact on his ability to read words.  The first word on the list was cake. On his first attempt he said c.a.k.e, pronouncing each of the lower case letters. I asked if any of the letter had another sound……he then read it as ceaykayee, so we had a long “discussion” about how sometimes we might use one sound for some letters and the opposite for others………..third attempt (with encouragement) was caykee…….this went on for some time until he gave up saying “if you don’t say the e why does it have one?”  …………….. He’s had this problem with most of the words and there are some that he won’t even attempt to read.

Problem number 2 is failure. Failure is not an option for J, if he thinks he won’t be able to do something, he simply won’t do it. So not being able to read some of his words has meant that he has simply refused to do his homework, that way he won’t “fail”. It doesn’t matter how many times we tell him “well done”, “good try” and so on, in his head he can’t do it so he won’t do it!  And don’t even get me started on the anxiety he’s felt and expressed over the possible failure!!

Problem number 3 is that the words he has been given are of no interest to him at all. I’ve tried to make them Mario or Moshi related but it just hasn’t worked. One of his words was like so I asked him to write something that he liked. He replied with “but  we don’t do Mario at school”……….cue another “discussion” and eventually I managed to get him to write “I like Mario.” With J if something isn’t of interest to him, it’s not worth bothering with and he will make zero effort!

Problem number 4 is homework is schoolwork! And ofcourse in J’s eyes, schoolwork is something to do at school, not at home. And in J’s eyes he’s on the school holidays so why am I making him do schoolwork?!?!

If you put all of that together and add the way J feels about school…………we have a big problem!

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A Little Bit Literal

J, like other people with Autism/Aspergers is a literal thinker.  He occasionally gets jokes (but very rarely and they usually have to be explained to him before he gets them),  and he doesn’t understand metaphors and sarcasm. At times this is funny and has made us laugh but at times his lack of understanding has fuelled his anxieties and has caused him, (and us) alot of stress usually resulting in an aggressive meltdown or lots of tears, both of which can be very challenging!

I’ve written posts in the past about J’s literal thinking (you can read a couple of these posts here and here).  I’ve gotten better at watching what I say, (whoops slipped up there hehe), but I still slip up at least once each and everyday. Sometimes the way he thinks makes me giggle, other times I get cross with myself for not thinking before I speak.

Just the other day whilst arguing trying to negotiate with him I made the mistake of saying “Sometimes you think the whole world revolves around you but……” and was interrupted by J who yelled at me “NO I DON’T! THAT’S JUST STUPID THE WORLD REVOLVES AROUND THE SUN NOT ME!”……….Smart kid? Yep he sure it, Smart Alec? Yes sometimes, Literal Thinker? Always!

Alot of people would think that his literal thinking isn’t really a problem but for J it can cause huge problems. For example, last year at whilst at school, for the first 3 terms he didn’t use the toilet at school,  instead he “held it in” and was bursting to go once he got home. This also resulted in lots of tummy aches as you can imagine.  The reason for this………….well it all comes back to his literal thinking. His teacher on a few occasions questioned him as to why he hadn’t gone to the toilet when she had told him to, he got a little upset by this and declared that he had………He had been told to go to the toilet and to wash his hands, so he had gone into the toilets and washed his hands. He had done EXACTLY as he had been told to do, but ofcourse this meant that he hadn’t actually used the toilet. (Using the toilet whilst at school is something that he still struggles with)

Something else he has difficulty with is his literal interpretation of rules………….For example one of the rules at his school this year is “Stay outside once you are outside”, J interpretation of this is once outside at breaktimes he can only come inside when the bell goes or his teacher tells him to. So if he does decide that he needs to use the toilet, he won’t because he can’t come in to do so, or if he gets “dirty” he can’t go and wash his hands because he can’t go back inside to do so.  One of the rules at his previous school was “No Shouting and when inside use your inside voice” so when he hurt himself whilst playing undercover, despite needing help he wouldn’t yell for help because it was against the rules. Instead he got upset when he came home that day because not only had he hurt himself but nobody had listened to him when he said, (in his inside voice), that he had hurt himself.

At times J also has difficulty understanding TV programs and separating what is real and what isn’t………for example during an episode of one of his favourite cartoons one of the characters was struck by lightening and became a ghost………… it was typical old school cartoon, (you know like Tom and Jerry, Sylvester and Tweetie etc), however J’s interpretation of this was, “if I go out when it’s thundering and lightning I’ll die because the lightening will get me”…………..you see the problem?

Then there’s jokes………. A friend recently told me a simple joke that I then told J……..”What’s green and sharp?”……”A blade of Grass!”………… Ofcourse we’ve had to explain this to J because his initial reaction was “Is grass sharp? I didn’t know it was sharp!” After a full on explanation he now gets the joke and he relays it to us …………….all the time! (‘Cus he’s so proud that he knows a funny joke now)

Why have I written this post? Well I just wanted to highlight J’s literal thinking. This week someone from J’s school told me that all children J’s age are literal………………I work with children and I know that to some extent alot of children J’s age are literal……………but not  as literal as J! His literal thinking (along with alot of his other quirks and struggles) is very misunderstood. Most people we’ve encountered don’t seem to understand just how literal he is. He lives in a very black and white world…………..There is no grey!

So please use your words carefully and think before you speak. Please try to remember your words may be understood EXACTLY as you say them.

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An Explanation…………Again!

So, this is a post that I originally did back in October 2010 but with a few reactions that we’ve had from a few people since coming back home I thought it was a post that needed saying again………………

So here goes……………

I’ve been writing this post for almost 2 weeks, I wanted to make sure it was right. Over the past month I received a few emails and had a few telephone conversations regarding J and the parenting skills of hubby and myself.  These were negative comments made by others, some people who “care” about us. Comments like, “we’re letting J be naughty”, “we let him get away with things” , “We’re giving in to his tantrums and so teaching him that if he has a tantrum he can get his own way”, “there’s nothing wrong with him, it’s just us”, “He’ll be fine, we should just be stricter” and so on…….. you get the picture.

These comments have had a negative effect and for the last couple of weeks I’ve started doubting our parenting skills, questioning everything I do and just generally feeling like a bad mum who can do no right. So big thanks to all those people!

It’s to those people and any others that would like to or need to understand a little more about J and Aspergers that I write this.

J has a hidden disability.  J has Asperger’s Syndrome (AS) which is an Autistic Spectrum Disorder (ASD).

This means -

J is a literal thinker, he doesn’t understand metaphors, sarcasm etc, see my post But You Said for some examples of this. J doesn’t understand social cues and most facial expressions. He doesn’t wait for someone to finish speaking, he doesn’t think twice about interrupting a conversation, if he has something to say he’ll say it and he HAS to be listened to because he won’t stop and will get louder until he is listened to. Sometimes he shouts, screams and even growls at people, just because. He can talk for hours about his computer games or Power Rangers and doesn’t understand that some people aren’t interested or are bored and fed up with hearing the same things over and over again. He doesn’t understand that sometimes he has to listen as well as talk.

He’s not being rude or attention seeking, he just doesn’t understand the unwritten social “rules” that we all take for granted.

Because of his lack of social skills, J doesn’t really have any friends, his “friends tend to be adult friends of mine or his Dad or they are much younger or older than himself, like H, (2 years) and S, (11 years). He did sort of make a friend at playgroup but didn’t understand that his friend also had other friends and didn’t always want to play his game with him and actually got quite sad about it, saying things like “*Jack* doesn’t want to play with me anymore he just plays with other kids,”  this was simply due to his lack of social skills and understanding.

J obsesses over things, at the moment it’s his computer games and Power Rangers, not only does he talk about them constantly  , he also “acts” like characters from them, reads the instruction book several times a day, (it’s his favourite “book” at the moment) and no matter what he playing with, it becomes his game complete with stages, bases, lands, levels and of course “baddies”.

J needs routine, he doesn’t cope with change. This isn’t just changes to his daily routine, it’s the way things are done, the route we take home, the order in which we do things, the way things work, if we do something in a different place and so on. For example if  we set his alarm clock before he’s had a quick drink from his water bottle we have to start the bedtime routine all over again, he changed rooms at playgroup just for a short while during one of his sessions but this caused him so many anxieties that a few months later he still checks and worries that he will be in a different room, (although he has now just finished attending playgroup), when we went to a prep open day he refused to go to what could be his new classroom because to him that wasn’t his classroom and Miss S and Miss C weren’t in there.

J has various sensory issues. He doesn’t like certain sounds, he can also make strange sounds at times. He has perfect hearing and yet sometimes doesn’t “hear” what is said to him because he has difficulty processing what has been said and organising all the sounds that he is hearing, something that most of us just do without thinking about it. At times it can seem like he is ignoring you, (and I’m sure at times he is, afterall he is a child), but the majority of the time he’s just having difficulty processing what has been said. He can get easily distracted by background noise too, a fridge humming can seem very loud to him, although we probably wouldn’t even notice it’s sound, so you can imagine how hard it can be for him at times to “hear” everything and process everything that he is hearing.

He also has “super sight”, he sees things that others don’t and can get extremely upset with you when you don’t see what he is pointing out to you. Bright lights can also have an effect on J, he often says they are hurting him.

J is also sensitive to certain smells and tastes and is extremely sensitive to touch. He smells everything and is extremely sensitive to a few smells that he doesn’t like.  He has a very limited diet, eating mostly white, very bland tasting foods. He hasn’t developed fully orally, by this I don’t mean that he has difficulty speaking, he’s extremely verbal, in fact he uses words that alot of 10 year olds wouldn’t use let alone 4 year olds. What this does mean is, he bites and chews himself, others, toys, clothes, etc…. He also licks his lips and gets a very sore mouth as a result of that. He overfills his mouth quite often because he simply doesn’t realise how much he in his mouth until he has too much in there.  As for touch, well J likes to touch everything, (usually when he’s smelling things), providing it’s not “dirty” of course. He HATES getting messy and in particular having dirty hands. He doesn’t like to be touched by others, for example if someone brushes past you in a busy shop you might barely notice it, however J will insist that someone has hurt him on purpose and will shout and scream. He doesn’t like anything to touch his head, so you can imagine how much fun haircuts are! He also has issues with clothes, at times he doesn’t like the colour or the way the material feels against his body, other times he insists that a tag or a seam is hurting him.

J also has difficulty with proprioception, (this is the sense that indicates whether the body is moving with required effort, as well as where the various parts of the body are located in relation to each other) and vestibular (The vestibular system in the brain allows us to stand upright, maintain balance and move through space.  It coordinates information from the vestibular organs in the inner ear, the eyes, muscles and joints, fingertips and palms of the hands, pressors on the soles of the feet, jaw, and gravity receptors on the skin and adjusts heart rate and blood pressure, muscle tone, limb position, immune responses and balance).  All of this means that he has difficulty staying still, in fact the only time he sits still is when he’s playing on his computer games but even then at times he has to be moving. He has an unusual bounce, he likes bouncing and jumping, it helps his body awareness. He doesn’t have great co-ordination,  he has a poor pencil grip, (he tends to grab rather than hold a pencil), he has difficulty using cutlery, (well he rarely uses it, preferring finger foods), he has difficulty pedalling a bike, using a scooter etc. He has almost no sense of danger, (although does have some fears), he climbs on everything so that he can jump off it, (he says that he’s base jumping!!). He has a high pain threshold, when he broke his collar bone earlier this year we had to wait 4 hours to be seen in A & E because he wasn’t screaming so it obviously wasn’t that bad! We quite often find a new bump or bruise, (he quite accident prone), that he hasn’t realised has happened until we discover it. We’ve been working on this with him, trying to explain to him that even if he hurts himself the tiniest bit he must tell someone, of course he’s now telling us everytime he gets the tiniest scratch, we can’t seem to find a happy medium.

J isn’t a good sleeper, he plays the usual games that most children play at bedtime, not wanting to go to bed, coming out with excuses etc, bedtime can take over an hour.Despite the warm temperature he insists on having his fleece blanket and his quilt on him and it must be over his collar bone. Once he is all tucked up fast asleep, he very rarely stays asleep, often waking 2-3 times a night and is a very early riser, he gets up most mornings between 5.30am and 6.30am.

Of course all of the above creates anxieties within J and leads to meltdowns. Please take note, Meltdowns are not Tantrums. When a child has a tantrum it’s usually because he/she isn’t getting their own way or what they want, J has tantrums just like every other child, however when J has a meltdown it’s usually due to his anxieties or his sensory issues. When J has a meltdown anything can happen. He hurts himself and others, he bites, hits, kicks, screams, shouts, scratches, pinches, opens and slams doors, throws things, smashes things……. the works. He seems to develop some kind of super strength when a meltdown occurs. J has difficulty regulating his emotions. Once a meltdown has started there is nothing we can do, we just have to try to make sure we protect him, (and ourselves) from getting hurt and simply wait until it’s over. Meltdowns can last anything from 10 minutes to the whole day. Meltdowns can occur because of almost anything and often occur without warning.

Of course these are just some of the difficulties encountered by J and ourselves, however there are also lots of positives, something we try to focus on and work with.

For example,

J is incredibly smart. At 4 he has just started recognising and reading certain written words, he can count to over 100, he can add and subtract, he knows all of his shapes and even knows the difference between a sphere, a cylinder and a circle. He knows so many facts about the human body, various animals etc you just wouldn’t believe. He can operate any computer games console and is a whizz on my desktop.

He has a great memory – he knows everything there is to know about his computer games, Power Rangers and some animals.

He has an amazing connection with animals, he loves them. He isn’t bothered by their size and colour or if they’re dangerous, he talks to them, hugs them, feeds them and so on. It’s wonderful to watch him interacting with them at the Zoo.

He’s very loyal.

He knows what he wants, once he’s made his mind up about something he won’t change it.

He’s persistent.

He’s a great leader.

He has great attention for detail.

I could go on forever with his positive so I’ll stop there, I think this post is probably long enough already. If you’ve stuck with it and have read the whole post, I thankyou for taking the time to read it and hope that it helps to “explain” some of the difficulties that J encounters and some of the difficulties that we encounter as his parents.

We know that J is going to encounter all kinds of difficulties during his life and parenting a child with Aspergers isn’t going to be easy, but we’re doing our best. We’re learning to appreciate the tiniest accomplishment, (like getting dirty feet or using a shower), we’re learning to understand some of J’s triggers, we’re trying to help him to understand feelings and social skills, we’re trying to help him develop to his full potential, we’re trying to ease some of his anxieties, we’re trying to set a good example, afterall we are his most important and influential teachers.

Most importantly we love him for who he is and we’re proud of him and everything he does.

I found this great post on Dani G‘s blog, please click, visit and read it’s a great explanation of What is Autism.

Obviously there have been a few changes since I wrote the above post but overall it sums up what I wanted to explain, I’ll write an updated version at some point over the next few weeks ;)

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Surprise!

J has NEVER been a child that has dealt with change or surprises well, everything has always had to be planned and J given warning of a possible change or “surprise”.

This weekend has been a tough one, J has been in a not so good mood.

My brother and his girlfriend came to visit Saturday morning, it was a planned visit and J was ready for it. The visit itself went pretty well, J was ok with them being here and showed them some of his things etc. Just before they left he began to have a little “moment” and refused to say goodbye to them when they left, choosing instead to hide in his room. This is where I began to worry what we were in store for next………. saying goodbye to people is something that he ………….prefers to do, so by missing out on doing so I just knew that he’d we’d have a problem. When he had calmed down from his “moment” (if you’re reading this little bro he moved on from banging on the floor to screaming about 3 seconds after I’d shut the front door), he then started complaining and whining because he hadn’t said goodbye to Uncle D………………and so the bad mood began!

I managed to get him to eat some cereal lunch and was just washing up the pots when there was a knock at the door. It was another family member, A, and her little boy. It was lovely to see her and I’d never met her little man before so it really was lovely to finally meet him and to have a quick cuddle However this was a surprise visit, one that J was 100% not ready for. He wasn’t very nice to the 2 of them at all, he wasn’t happy about them touching his things and was just really unsettled having them at our house………….Then we had another surprise visit……….A’s brother, JA and his son! Again it was nice seeing them. However, despite being ok with JA and his son on a previous visit, J was not happy about having another surprise and  proceeded to be not so nice to them aswell.

The bad mood continued into the evening and was still present this morning *sigh* So when JA and his son, L, came for another surprise visit it didn’t go down well. Again J wouldn’t let JA’s son touch any of his things and was not so nice to him. Just before JA and his son left J decided to hurt L. He pulled his hair and upset him…………..J tells me it’s because he asked if he could go on his DS!!   Grrrrrrrr!  But it wasn’t just them that he was mean to, this Mummy has received a couple more minor injuries too

This afternoon we went to visit a friend, a planned visit that he was looking forward to. Despite wanting to visit the friend he had an issue with getting in the car because there was a blanket under his booster seat (to protect the seat of the car), and he was insisting that he would get dirty if he got into the car whilst the blanket was under his seat………………….Anyhow once we’d gotten through that “discussion”, off we went. He behaved pretty well at our friend’s house, she allowed him to play on her Wii………Mario ofcourse! (Thankyou xxxx)  He began to get a little cross when he had to turn the Wii off and it was time to leave……….unfortunately the bad mood continued once we had left. We popped to Tesco before going home (I needed milk) and although he didn’t have any big “moments”, the bad mood continued and he got a little upset. He’s now gone to bed grumpy and arguing………he doesn’t understand why he has to go to bed, he doesn’t like to sleep, Sleeping is boring…….etc etc (you know the usual things).

On top of the bad mood he’s refused to eat for most of the weekend, not unusual I know but he’s eaten even less than usual.

I don’t know what’s caused the bad mood. Maybe it’s the cold he’s caught, maybe it’s just the stress that’s built up whilst at school during the week, maybe it’s a reaction to events on Friday…………………or maybe it’s all of those things and the surprise visits were just too much to try to cope with.

So family and friends what I’m trying to explain/say/ask is ………………………..PLEASE let us know in advance before coming to visit. Please don’t just drop by and expect us to be happy to see you or indeed expect us to be able to just drop by with no notice. I’m not trying to be a pain, I’m not “playing up to J’s behaviour” and I’m not asking for much, just a little notice………a pre warning for J. We really do love seeing everyone but just need a little warning…………Thanks in advance

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