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Archive for the ‘Autism’ Category

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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I wrote a post last year about a conversation I overheard my then 5 yr old had with his Dad……………. He’d told his Dad that he just wanted to be “normal” and didn’t want to have Aspergers anymore. Since then we’ve done lots of work with him trying to explain that nobody is “normal” and everyone’s idea of normal is different but that having Asperger’s Syndrome just makes him that extra bit special.

You see before J I worked with children, I’ve worked with alot of children in different roles, even some special needs children. Every child I’ve worked with has taught me something, some have taught me more than others, however not one of those children have taught me as much as my son. Apart from love, patience, understanding and ofcourse everything there is to know about Mario ;) he’s also taught me that superheroes can come in all shapes and sizes. Yes he’s my Hero.

I don’t have Aspergers but I do have OCD and I know just how hard some simple little things can be but I can’t even begin to imagine how hard everyday can be for him. At 6 he deals with it, he is simply amazing. He’s so incredibly smart too, I look in his eyes and I can see him trying to work things out in his mind. And when he shows emotion, it’s real. So he only really does sad, angry or happy but it’s real. He also struggles to lie, in my eyes that’s a great thing, we’re always honest with each other.  J having Asperger’s Syndrome has taught me to really appreciate the little things in life.

It’s hard because he’s only 6 but we try to explain that Asperger’s Syndrome isn’t who he is but it is a part of him and although some days can be tough we wouldn’t change that part of him or any other part of him because he is who he is and we love him for the being the person that he is.

So to “I wish I didn’t have Aspergers” I’m going to remind you that somewhere out there are people who care about you because you are who you are and Aspergers is just a part of you, it’s not all of you, it’s an extra special part of you. I don’t know if that will make sense to you, I hope it does. Take care x

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Part of me has found it nice being back in England. It’s been nice catching up with some family and friends, I’ve enjoyed shopping a little more over here and Hubby has been seen by a spinal specialist already. However we seem to of had one bad thing after another happen during the last 3 months.

We didn’t have a great moving day and we’re still dealing with an issue from that day. Our container was also “delayed” in leaving and so missed the first ship it was supposed to be on, This has meant that not only has it arrived a month later than originally told but we have had to re-complete all of our customs forms too. Today we discovered due to the incompetence of our removal company in Australia and incorrectly labelled packages, Customs have opened some of our boxes/packages and have confiscated some of our belongings, despite the very same items being owned by us for over 7 years and so have travelled out of and into the UK on more than one occasion. Oh and we won’t know which items have been removed until our shipment is delivered to us on Friday!

We’ve struggled to get J’s diagnosis recognized in the UK. This has meant the school that we chose for him has had to source outside funding in order to provide him with support for the last term, however that funding has run dry and so this term it is expected that he will attend full time with no support. We also had to see the same Peadiatrician that refused to diagnose J before we left for Australia 2 years ago, it wasn’t a good meeting and we’re now waiting to see another Peadiatrician, 25 miles away! In Australia J had support however limited it was in school and he had support from an OT, Speech Therapist, Psychologist and Disability Services………….In the UK so far J will receive zero support.

Relationships with some family and friends have also not been as they were when we left 2 years ago. Time changes people and I guess being thousands of miles apart can also change a relationship too. I know it’s partly my fault too, I know I’ve changed alot. Another thing that’s forced a change in some of these relationships is reactions to J…………and my reactions to those reactions. What people have to remember is J doesn’t remember the majority of these people and so they are strangers to him…………He doesn’t react well to strangers unless he feels a connection with them, (like his best friend H). Then there’s been the people who haven’t been sure how to react to his behaviour and so once he has reacted negatively to them they haven’t returned for a second visit or haven’t been able to relax and be themselves around him on the next visit. And of course there have been the ones who still think our parenting needs work. Not everyone but some have and to be quite honest I just can’t be bothered to worry about what they may or may not think about my son’s behaviour or our parenting ‘cus we’re all doing the best we can and to me that’s all that matters.

Ofcourse the weather’s been up and down but we’ve felt the cold and we’ve all missed the sunshine that Australia gave us! And the icing on the cake………………… feeling cold is going to be even worse tonight, we had our boiler services today and was told it was leaking Carbon Monoxide and so had to be shut off for health and safety reasons, with the hope that it may get repaired tomorrow!

Then there’s Hubby’s back…………..the reason that we returned to the UK. We left Australia after being told there was nothing more Workcover would do and was told to claim financial support from the Australian Government, something that as non-citizens we couldn’t do. Since arriving back Hubby has been seen by a spinal specialist quite quickly but has now been referred to a pain clinic. They now think he has had a trapped nerve that is no longer trapped but is sending pain signals to his brain and body…………………………….Seriously, we came all the way back to the UK for them to tell us that!!!

If you add all of the above to how we miss our nice big house in Australia, (you forget how much smaller houses in England are), our friends that we left in Australia, the beach and the life that we had over there, we’re left questioning our decision. Did we do the right thing coming back? And where do we go from here?

 

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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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After a comedy of errors and rather alot of stress our container containing almost everything we own is almost with us.

The day of removal/packing didn’t go brilliantly and we still have an unresolved issue with our removal company, something that I can’t go into at the moment, but needless to say it’s an issue that’s been (and still is) causing us a fair bit of stress. Our shipment/container was supposed to be on it’s way to us almost immediately after being packed and should have arrived in England around the 4th March. Obviously it’s April now, so you may have already worked out that, that didn’t happen! Nope in fact we’ve had to fill out all of our customs forms again because it’s come over on a different ship etc……. And to top things off the removal company in Australia didn’t label some of our “packages” correctly and so this has also provided more problems now that it has all arrived in England!

We’ve been back in England for 3 months now and although it’s gone really quickly and we’ve been extremely busy, we’ve started to miss little things. I’ve started to wonder if we packed the right things in our suitcases. We packed 4 cases, had 3 rucksacks crammed full as hand luggage and I had the biggest handbag I could find, as well as coats………….can you imagine the 3 of us (well 2 really, ‘cus J didn’t actually carry anything) trying to navigate check in at the airport and arrival in England with all of that luggage?!?! LOL

In the suitcases we packed the obvious – clothes and a few special toys, but we also had to pack J’s car seat, he refused to get a new one or sit on a borrowed one so we had to pack his. This took up most of the space in one case. We also had to pack J’s pillow, just packing his pillow case wasn’t an option. We tried changing his pillow before we left and he refused to sleep on it ‘cus he knew it wasn’t his pillow and so decided although we were going to have our sleep issues there was no point in making it worse, we packed the pillow………………….this case I had to sit on in order to close it! And ofcourse we had to pack J’s Ready Bed, we also packed sleeping bags for ourselves, (they took up less room and weighed less than blankets or quilts). We also packed a few of J’s “therapy” items such as his bodysock and his therabrushes. As for toys, somehow, (I’m not sure how), we managed to convince J to only pack the essentials………….his Mario figures and castle (obviously!) and a few special toys and books. And clothes………..we knew it was probably going to be cold, much colder than we had been used to for the past 2 years so we packed several jumpers……………..Do you know how much room jumpers take up in a case?!?!  Hand luggage was taken up with J’s laptop and Ipad and all of Hubby’s medical notes and J’s medical and school notes.

When everything was packed we were just over our baggage allowance so couldn’t possibly pack anything else but over the past couple of weeks I’ve started questioning whether we packed the right things. All of J’s medical notes and school notes haven’t made a blind bit of difference and we’ve been told his Aussie diagnosis and everything we’ve done with him over the past two years is worthless and not valid in the UK, (Ridiculous right?!), so was it worth packing? We started missing alot of things too……….. J is obviously missing all of his toys and books and ofcourse the Wii, (he’s really missing the Wii!), but we’re also missing our beds, airbeds are ok for a while but Hubby’s really struggled to sleep on one and is now “sleeping” on the floor because it doesn’t hurt his back so much and J misses his bed…………….me I’m happy just to get some sleep, I don’t care where I have to sleep, just so long as I get a couple of hours rest! I miss my computer and I really miss my big fridge freezer, I miss being able to do a proper weekly grocery shop and it’s costing a fortune having to go to the shop every other day, (we’ve bought a small fridge since arriving back just to keep milk in etc). I miss my wardrobe, wearing the same clothes every week is starting to bore me. And I miss my photographs! Some of them contain precious memories and it’s a horrible feeling knowing that they’re somewhere out there floating on the ocean, you just have to hope that everything will get to you in one piece.

Our container has been in the UK for almost 2 weeks now and we’re hoping Customs won’t hold it up for too much longer………….it’s going to feel like Christmas when everything arrives!……………..Then we have to have a clearout, we’d forgotten how much smaller houses in UK are!!

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Exciting times in the MumtoJ house this week……………………………………..After just over 10 weeks of wobbling to and fro and then side to side, J has finally lost his first tooth.

When I say lost, I would like to make it clear as I had to with J, that I don’t mean that he’s actually lost it but his first tooth has fallen out! ;) Well, I have said before that he’s a literal thinker, I should have been more careful with my words………..he was quite upset with me for a few minutes when I told him that it was very exciting that he’d lost his first tooth, then reworded it and explained that I meant his tooth had fallen out…………………to then be told “Why didn’t you say that then?!?! hehehe

Just after arriving back in the UK J’s best friend back in Australia told us that he had his first wobbly tooth. J’s immediate reaction was concern. Would his friend be ok? Would his tooth fall out? Would he bleed? After a chat about how all kids have baby teeth fall out so that their grown up teeth can grow in place of them, he was ok with it. About after his friend’s news J discovered his first wobbly tooth. After the chat that we’d had, his reaction was now excitement, in fact he declared “I’ve got a wobbly tooth, that means I’m nearly grown up now!”

Every time he’s seen someone that we know, everytime, he’s asked “Did I tell *** that I’ve got a wobbly tooth” or  “Did you know I’ve got a wobbly tooth!” He’s wobbled it and wobbled it even more. He’s been abit particular with what he’s eaten, (yes even more than usual), just in case it’s hurt his tooth. And finally after 10 and abit weeks it’s finally fallen out!!!

Since it fell out this morning, he has several times asked if I can stick it back in………………with superglue! I’ve had to explain that whilst Mummy can superglue his toys back together, I can’t superglue his tooth back in because it would be poisonous to put the superglue into his mouth! Ofcourse this made him worry that he had gotten a little bit poisoned when he had put the toys into his mouth after I’d glued them, bless him! We got through that one only to be confronted with the tooth fairy!!

Tonight he’s wrapped it in a piece of kitchen roll and put it in a cup so that the tooth fairy will see it. He didn’t put it under his pillow because he didn’t want the tooth fairy to go too close to him or touch him, so Daddy came up with the cup idea (Well done Daddy!). We’ve had a very long chat about the tooth fairy, in fact we had several very long chats about the tooth fairy. You see at Christmas J really didn’t want Santa to come into our house and to begin with he had some concerns about the tooth fairy. Soooo the agreement we finally came up with is, the tooth fairy leaves a coin (he told us it had better be a £2 coin! lol) and will also leave his first tooth because it’s special. He has a special pot to keepsake his first tooth in but every other tooth that falls out, he will get a coin for and the tooth fairy will take the tooth to keep it in a special secret place.

Here’s hoping the tooth fairy doesn’t make a noise when she goes into his room tonight eh? ;)

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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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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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Well could you? I know I can’t ……………I try but I just can’t.

However my amazing, awesome little man can! J has the most amazing memory EVER!

Since arriving back in the UK J has discovered Moshi Monsters. We went to play at a friend’s house, her youngest daughter, H, is a couple of years younger than  J but they have always had some kind of special connection……..And I hope my friend will agree it really is quite special watching them play together :)

Anyhow, H had a small collection of Moshi Monsters which they played happily with…………..and so the interest began, yes interest it’s not quite an obsession yet, Mario still holds the crown there. It becomes an obsession when every other conversation, every other game and 90% of all artwork is that particular topic and at the moment Mario is his favourite topic of conversation, almost all artwork is a Mario character or a level/world on a Mario game and every other game that we play becomes a mario world/level or story. :)

J took around 2 weeks to memorize every Mario character in his games, one of his favourite things to read was the instruction booklet that came with his Wii games, (yes he has more than 1 and he’s sooooo good at playing them).

He took around a week to memorize every Sonic character.  In fact we have used Sonic to help him make a connection between Australia and the UK. How? Well Knuckles is an Echidna and so is Australian, Sonic is a Hedgehog and so is English……..see the connection? :)  But what has amazed me even more is his ability to store all of that info and then memorize the name of each and every Moshi Monster in such a short period of time!

Despite J talking about Mario every day and night, (he’s woken up on more than one occasion during the night to tell me something very important about Mario!), I’ve not been able to remember the names of all the Mario characters, let alone Sonic, Moshi Monsters and all the other things he knows……….don’t get me started on animal and space facts!

So, I wondering how I can make his interests and obsessions more educational. I mean if he can memorize all of the things he can, imagine how he could excel if for example Mario became a scientist……………….

J you amaze me everyday little man. You’re pretty awesome and Mummy’s so proud of you…………………..You’re going places kiddo!

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