36/365 – A Tranquil Place To Unwind

I really need this place right now!

It’s been a tough couple of weeks but this last week has been especially tough!  I’ve reached the top and had to stop before I’ve blown a fuse!

Firstly my husband has been off work all week after hurting his back at work and is off for at least another 2 weeks. Let me just explain something, my husband is someone who HATES relaxing and doing nothing so to be off work, stuck at home and unable to do anything is driving him crazy and that is driving me crazy! Doing nothing is also making him really grouchy! Ok I know he’s hurt his back and he’s in a fair bit of pain but seriously I can’t wait for him to get back to work for all our sakes!

Secondly it’s been really hot here this week, my car doesn’t have aircon and I’ve had lots of meetings this last week which have meant spending lots of time in the car!  I really need a new car before next summer……..one with aircon!

And finally there’s J and Prep! He’s been coping really well whilst at school but as soon as he’s out of those school gates all hell breaks loose! This week has been worse than last week and it’s just been constant, one meltdown after another On Wednesday it took me almost 20 minutes to get him into the car when we left school! It was too hot, the seat didn’t look right, he couldn’t get in with his shoes on, once he was in the seat didn’t feel right and it was hot so he got back out again………. it just went on and on. Then he started on the way home because the wind blew into the car and touched him! It’s been like that all week, he’s been way more meltdowny and grumpy than usual. J doesn’t understand his emotions or how to control them so we only ever get extremes……….. extreme happiness, extreme excitement, extreme sadness and of course extreme anger. He has been shouting and screaming just about everything to us, he’s been extremely      unco-operative, every tiny little bump has meant that the world is going to end, (and there’s been a few, his clumsiness has skyrocketed too), he’s had a problem with just about everything, he’s been quite aggressive towards us, (pushing, hitting, kicking, pinching and biting), he’s started biting himself and sucking his arms, legs, fingers etc,he’s barely eaten at home and some of the bedtime battles have been quite spectacular!  Meanwhile at school he’s been a different child.

We have had a couple of issues at school. The first day at the ECDP (Early Intervention) he was due to be in another classroom with a new teacher so that caused a mini meltdown, (but in a way it was nice for them to see that), once Miss C had told him that there was some mix up with numbers and he and some of his other former classmates from last term would in fact be back in their old classroom with their teacher from last term, Miss S, he was ok and happily went into his classroom.  My issue with this is, we have been told that he will be going into the other classroom with the new teacher, they just don’t know when that will be. They have introduced him to the new teacher and even to the new classroom but each time Miss S, (who he feels very secure with) has been with him, when he moves she won’t be there. So we’re going to still have all the issues we had on his first morning. *sigh*

He went into school ok each morning until Thursday this week, (once we’d actually got to school). I took him to school on Wednesday morning, (mainstream Prep), and we had the usual fun and games trying to get ready for school, leaving and then during the car journey but once at school he went in ok, not happy but ok. He went straight to the table with the clean chair and the pink playdough………….only thing was the classroom had been moved around and the playdough  table wasn’t where it was supposed to be!  It really knocked him for six and he refused to go to the playdough table. Whilst we had a few grumbles I left him creating something with a peg board. Thursday morning he just point blank refused to go into school and I had to drag carry him in and then catch him twice as he managed to escape the classroom, he didn’t get very far, I was ready for anything. He didn’t look too impressed when I left him that morning and he certainly made me suffer when I collected him Thursday afternoon. Yesterday was pretty much the same as Thursday, but he also banged his head (purposely!)  on the wooden railing at school and informed me, whilst crying, that he couldn’t go to school because he had hurt his head and I’m sure it’s all linked to the classroom furniture being moved around. I have spoken with the teacher and I’m hoping if they decide to move things around again they will give him some sort of warning because he can’t cope with change.

He made a good start with food during his first week of school, eating pretty much everything I put into his lunchbag, (much to my amazement!) but over the later part of this week he has come home with at least half of his packed lunch. Again I think it could be related to the change around of the classroom but maybe it’s also getting to the “ok I’ve been a school a couple of weeks and I still don’t want to be here” stage.

The other issue we’ve been having whilst he’s been at mainstream Prep is toileting……….. he just hasn’t been going at all! He often waits until he’s desperate for a wee before he’ll go so we prompt him every so often to go, try for a wee and his ECDP teachers also remind him so no problems on a Monday or Tuesday. I spoke with his Prep teacher about it and she told me that she has been reminding him every lunchtime to “go to the toilet, wash your hands and get your lunchbag”……….(take note of her words)  Far too many instructions all in one go for J bless him. When I asked him why he hadn’t been for a wee he replied, (Miss C never told me to, she said I had to wash my hands!”. *sigh*  So had another conversation with her Friday morning about how it would be better if she gave one instruction at a time and made it clear that he had to go to the toilet, (for a wee) and then remind him to wash his hands afterwards. Finally yesterday he actually had a wee at school so he didn’t have belly ache and he wasn’t bursting to go when we got home.  I’m hoping this continues, once he’s been doing it for a couple of weeks he’ll get used to the routine and will (hopefully) just do it automatically…………..only time will tell.

Overall he’s coping so incredibly well whilst at school but out of school is such a different story. I wonder will it always be like this?  Will it pass once he finally gets settled and then start again next year?

I get why his behaviour is the way it is, I really do……. I get that he trying so hard to be “good” in school and to be like all the other kids and I understand that once he leaves school he’s with Mum (and Dad) again so he feels he can just release everything he’s been trying to control all day because he knows we love him unconditionally and it doesn’t matter what he throws at us (literally, it was the office chair this morning!), we’ll always be there. You see I do, I really do get it but that doesn’t mean I don’t wish it was a little easier. I love him and even with the constant meltdowns I love every minute that I spend with him but over the past 2 weeks I’ve started missing some of the fun we had together before school began.

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Just Crazy!

WARNING: I’m having abit of a rant

As I sit here at my desk I can hear rain crashing against the roof and the windows and in the distant sirens are wailing.

I drove to the shops this morning and witnessed various things that can only be described by one word  -  CRAZY!

It raining here…………. alot and it’s extremely heavy, in fact it’s so heavy I could barely see what was in front of me as I drove along the road……… there’s just so much water!  It’s been like this for a few weeks now with only a dry day or 2 here and there. We’ve not been hit to the same extent as northern and western Qld but it’s been so wet that after 4 hot dry days the garden was still soggy and had a puddle in…………… something that is once again a lake!  So you can imagine what the roads are like, (some are flooded and inaccessible) and how hard it is driving in so much rain.

Crazy is just how many people didn’t have lights on…………. seriously it’s hard enough trying to spot the car in front that has lights on, how on earth is anyone supposed to see the car travelling with no lights?!?!  Do everyone a favour………. PUT SOME LIGHTS ON!

Crazy is the drivers that think they can still drive as fast as the speed limit allows them to, (and some faster!), despite the amount of water there is on the roads and limited visibility. Crazy is the drivers weaving in and out of lanes just because they can’t slow down and crazy is the drivers who are in such a rush to get away from the lights that they spin their wheels and even skid a little just to try to get away that little bit quicker!   Do everyone a favour…………… SLOW DOWN, by going faster than you really should be you might never get where you’re going!

Crazy is the 2 drivers who I saw suddenly stop in the middle of the road, (across 2 lanes), because of a pot hole and a puddle. Yes it was a big puddle and yes the pot hole was big but maybe you should have gone around it like everyone else instead of suddenly stopping in the middle of the road. You could have caused a major accident!

So as I sit here and listen to the rain I’m not surprised that I can hear sirens. It does make me feel angry that some people show such stupidity and craziness when driving in extreme weather, (or any weather for that matter!). These people should take a moment to think about the devastation their actions could cause!

Ok rant over, sorry for going on abit but I just couldn’t believe some of the driving “skills” stupidity that I witnessed today!

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Control Issues!!

Ok so J has had control issues for what seems like forever but lately these issues seem to be taking over his whole personality!

When J was a baby he would have hour long temper tantrums at 9 months old! We would put him into his travel cot until he was over it …….. yes we tried the whole controlled crying thing and ignoring him until he had calmed down but with J it rarely worked. He just wouldn’t give in and soon progressed to banging his head on his travel cot so we stopped using it………. His first encounters with control!

The control issues soon progressed to things such as food – he would only eat what he wanted to eat, (usually just cheese or cereal), this is still a big issue now. Then he would have a meltdown if we drove “the wrong way home” because of course there can’t possibly be more than one way to get home. This is something that we share control over, at times we purposely drive a different way home, park in a different car park etc and yes we have all sorts of fun and games with J because of it but it’s not as bad as some other “moments” we have to cope with and gives us a little control back When games were played or if we went for a walk to the park or somewhere similar it was always by J’s rules and if we didn’t follow the “rules” we had to be prepared for the fireworks that would occur.

He loves doing the smiley chart – he gets 5 smiley faces (or marios thanks to a lovely friend of mine) and then gets a reward that he has chosen. As you can see this is something he controls therefore works with it.  He’s not so keen on the traffic light system that we have now been using for a few weeks, he often has a meltdown when he loses one of his special privileges, (especially computer games), but we are sticking with it because that’s our little bit of control.

However things have started to escalate lately and he now has to be in control of every tiny situation because when he doesn’t have control we have to cope with meltdowns! I get that control is an Asperger’s thing and I get that he has a need for routine and stability but seriously he’s taking things abit too far! He saw a child psychologist last week and it took her very little time to take note of his need for control. He quite simply has to be in control of everything! Examples I hear you ask……. well here’s a few from this week.

For breakfast every morning, (and I mean every morning) J has a yogurt covered cereal bar, (he thinks it’s white chocolate, 1 point to Mummy), but yesterday morning I took a cereal bar out of the box and handed it to him, he had a major freak out screaming and shouting at me because…………… he needed to get it out of the box and I had chosen the wrong one!  WHAT!!! So ofcourse I then had to put it back into the box and he took it back out and then ate it.

Jumping on the trampoline he yelled at me because I was jumping wrong and then, still yelling, (just so the neighbours could hear), he proceeded to tell me how we should jump on the trampoline and where I could stand etc…..

When I made his sandwiches at lunch today he supervised me with his arms crossed, (he can’t fold them so crosses them over, it’s quite funny to look at, but ofcourse I’m not allowed to laugh because that then results in yet more screaming, kicking, hitting etc). I was told every step of the way how to make his sandwich………. yes he told me how to butter the bread, pointed out that I had missed the tiniest bit near the crust, you know the crust that he won’t eat anyway, and he told me exactly how much grated cheese to put on his sandwich, after I had cut the slice of bread into triangles so that I could put his sandwiches together right!

When we played on Mario I had to follow his rules……… we’re obviously not allowed to simply play the game!

When he got dressed this morning I helped him to put his top on or I tried to at least……. that was my first mistake! First I should have let him get a shirt out of his drawer because he would have chosen the right one, secondly I shouldn’t have put his top on before his shorts because obviously I was doing things in the wrong order!

This is just a few things I could go on forever, he really does have to be in control of everything!

It’s getting towards the end of a very long year and we’re all tired exhausted and have just about had enough. J seems to be having one meltdown after another and like I say seems to need to have control over everything that happens. Hubby is getting tired and fed up, he comes home at the end of a long day at work to be greeted by J screaming and shouting at him and quite often hitting him ……….. he doesn’t seem to quite grasp the fact that that’s exactly what I’ve been dealing with all day. I’m surviving on about 4 hours sleep every night and lots of caffeine and to be quite honest by the time hubby gets home from work I’m starting to get to the end of my tether. So by 6pm – 7pm ish we’re all pretty grumpy ………. then the bedtime battles begin,  more control issues.

I love J, I love him more than I’ve ever loved anyone or anything and I wouldn’t change him for the world but the control issues…… mmmmmmmmmm………. really need to get on top of them, afterall when he starts Prep in January there will be so much that he won’t be able to control, I just don’t know how he’s going to cope.

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Finally Some Progress!

This morning we had another trip to Prep arranged and as usual it started as it always does with “I DON’T WANT TO GO TO PREP!” and “I HATE IT!”.  Yep just the usual, I tried to ignore it as I had already prepared myself for this.

When we arrived at the school I decided to show him the Tuck Shop and thought it would be nice for him to buy his own school shirt. He quite happily let me buy him a school shirt and then told me, (once again), “I’m not wearing it though.” – Progress though right? He let me buy the shirt

Then we went across to reception to let them know we had arrived and then Oh Boy did we arrive!! J started with the kicking and trying to escape whilst we were in Reception. The Head of Special Education spotted us and took us across to the Early Intervention Centre and then we went from into the Prep area. Whilst in the playground at the EI centre J was really going for it, ok not a huge meltdown but bad enough and his EI teachers were really surprised, they hadn’t seen the J that likes to kick everything and everyone before, he’s usually so well behaved when he’s there.

Anyhow, we arrived at the Prep area where we met J’s soon to be teacher, who seems very nice, and the advisory teacher, Miss S, whom I met with last week. J simply continued with his wanting to escape and kicking, so I started thinking “yep this is going to be a complete disaster again“…….. I tried to get him interested in using his camera, using my camera and some of the things in the room, no joy.  Then Miss S took out some secret weapons, she had brought with her a couple of sensory toys, one of which was a large squidgy frog which he loved! However he could only hold/play with the frog if he was standing, (he refused to sit on a chair because they were dirty! LOL), nicely and listening to his teacher.  He tried to escape but was reminded by Miss S that if he ran around being silly he would have to put the frog away…….. it worked…….. he listened!! mmmmmm never usually works for us!

When the register was done all of the prep children said good morning, then his teacher said good morning to J and although he yelled it at her, he replied with “MORNING!” and a scowl.  Progress right?

Then the children went outside to play and although he wasn’t overly happy and had one or 2 issues – the slide was dirty, he couldn’t make his body climb the way he wanted to go and so on…. – he actually played in the Prep area!!!  HUGE PROGRESS  right?

We actually managed a trip to prep that lasted more than 10 minutes and he played!!!  WHOOP WHOOP!!  We were thinking of taking him over to the computer block but as he was starting to look like he’d had enough we decided to end on a high and so left.

Then this afternoon whilst he was at EI, his teachers took the children over to the prep area to play at recess and he was ok! In fact his EI teacher spend a little while talking to me about their little trip and I was informed that he even said hello to his new teacher.  Huge Huge Progress right?

He’ll be going on another trip tomorrow whilst at EI and again next week so I guess we’ll see how he gets on. I hope that saying hello to his new teacher means that kind of likes her, (very important). I know it will be very different for him when he actually starts prep, on his little trips with his EI teachers it was just the 6 kids in his class playing, he copes ok in small groups but when he starts prep it’s going to be a very busy, (sensory overloading and lots of change), classroom and playground.  So I’m still panicking about January but I finally feel that we’ve made some progress today!

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Who Would Have Thought It?

Today has been absolutely brilliant!  Better than brilliant!  It’s been the best! ……………… until bedtime arrived that is!

We went to along to our Playconnect group this morning and for the first time ever J didn’t attack anyone or throw any chairs or toys at anyone. In fact he shared the Cheerios that a couple of the other children and himself were using to make necklaces with, they were really enjoying eating them rather than making necklaces. LOL  He played nicely amongst the other children in the small group whilst they were outside. He joined in nicely whilst playing ring a roses. He even sat at the table for morning tea and ate a packet of crisps, (ok I know not exactly a good snack but he sat at the table and with other kids!).  We had no meltdowns at all!

Then this afternoon, as usual he was on his best behaviour at school, (EI). When I picked him up I had no “sillies” on the way home even though it was my turn to choose which way we went home and the car was hot, 2 things that usually always lead to a meltdown.

Once home he got to play on his game for an hour, we used his clock so he knew when it was time to turn it off.  Once again he surprised me, he turned his game off without even the slightest tantrum let alone meltdown!

J even tried scrambled egg tonight for tea, he didn’t like it, as soon as it was in his mouth he spat it back out but he tried it!

The reason for all his good nice wonderful behaviour…….. our new chart, yes that’s right another one.  With this one everytime J does something nice or good, (like using his manners, playing nicely with others, taking it in turns, listening to and doing what is asked and so on), he gets a smiley face. Once he has 5 smiley faces he gets the reward that he has chosen. With this chart he can earn his rewards very quickly and today earned 3 rewards!

I had a meeting with a very helpful Advisory Teacher at J’s school yesterday and this was her idea, she thought it might work as it has for a great deal of other ASD children.  Boy was she right!

Last night I sat down and created the chart above, we used smiley faces rather than stars because he loves smiley faces. Who would have thought something this simple would make such a huge difference?

Of course after the day bedtime arrives along with the usual battles again. Tonight he was worse than usual and had a huge meltdown lasting around 45 minutes because he couldn’t decide which story he wanted!!!

AARRGGHHHHH!

Can’t have everything I suppose

 

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Bedtime Battles!

Why does bedtime have to be such a series of battles?

J has always been the type of kid that likes to play fun and games at bedtime. He’ll come out with excuse after excuse – he needs a drink, he’s cold, he’s hot, he heard a sound, saw a shadow and so on …….  However over the last month bedtimes have started to become a battleground. As well as the usual excuses he’s been having “moments” and meltdowns, which ofcourse have involved kicking, screaming and even more excuses, – he’s not sleepy, I’m being horrible to him because I’m making him go to sleep and he can’t sleep! he needs his special doggy and can’t find it, when it’s in his hand.

Apart from the usual excuses he’s not usually been too bad about going to bed, staying in bed has always been his problem, waking 2-3 times a night and then waking extra early every morning. When he was younger we couldn’t get him to bed much before 9pm, then when he was just over 2 years old we decided that it had to stop and we had to get him to go to bed earlier, so we started bringing bedtime forward 5 minutes every few days until finally bedtime was 7pm.

6:45pm arrives and J gets a 15 minute warning, then a 10 minute and 5 minute warning. 7pm arrives and J begins his bedtime routine, saying goodnight to Daddy, going to the toilet and so on. The first game is usually finding special doggy or skanky blankie, either one usually vanishes just as bedtime arrives and is then found hiding. Once his pj’s are on then the battles really begin, starting with a bedtime story, we’re trying something new tonight we’ve already decided our stories and have put them by his bed so fingers crossed that will be one less battle that we have tonight.

Anyway after the 1st battle has begun it’s just one after another – I’ve read the story wrong, I’m making him hot and so on. These battles are lasting for around an hour and they’re so exhausting. By 8pm I’m shattered, I’ve been up for around 14 hrs after having around 3-4 hrs sleep and I end up sitting with him to calm him down, (after yet another meltdown because he’s lost his computer games due to his behaviour, so you just know the next morning is going to be even more fun and games!).  I know I shouldn’t sit with him because he’ll soon be wanting me to do it every night but there is no other way of calming him down and he’s not the type of child who would scream himself to sleep, he’d just carry on screaming all night, (he’s done that before until I gave in after 3 and abit hours!).  I know he’s tired when he goes to bed, in fact he’s probably over tired and that’s probably not helping. What I don’t understand is why he’s suddenly decided that he needs to have these battles.

His behaviour (in particular his aggression) has also gradually gotten worse over the past month or so. His pediatrician has prescribed medication to help calm him and some of his anxieties, we’ve been told to mix it with his food, how exactly are we supposed to mix it with bread and cheese???

I’m sure these new battles are somehow connected to his gradual rise in aggressive behaviour and he has to go see a child psychologist in a couple of weeks because of it, who knows it might help…… right?

In the meantime anyone got any other ideas?  What can we do to ease some of these battles?

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“I Don’t Want To Be Here!”

We went to J’s school this morning, they were holding a reading morning in the Prep area. Some people came in to read some stories to the Prep children and some of the children who are due to start Prep in January. J is one of those and I thought it would be good to try another visit to the Prep area as the last one didn’t go too well.

It started well, he willingly got into the car and then out of the car when we arrived at the school. He walked through to the Prep area and that’s where it all started to go wrong! He refused to go into the classroom, again, even though he knew his friend M, (also an Aspie) was in there with his Mum. So I carried him into the classroom and then had to carry him whilst we followed the Prep children to the first story corner.

Then the fun and games really began, J refused to sit with the other children, even though M was sitting with them, in fact he refused to sit! So I told him he could stand but he had to stand quietly so that he and the other children could hear the story. J replied with kicking, biting, shouting, screaming, hitting and “I don’t want to listen it’s a stupid story” “I hate it here” “I don’t want to be here I just want to go home”.

The story morning was on for 1 and 1/2 hours however after about 30 minutes of the above behaviour I’d had enough and gave up, we left. Unfortunately the bad mood is still present now, but the day did start well until we went to the school. I’m now even more worried than ever about how he’s going to react when he starts prep. He loves going to the Early Intervention/ECDP program at the school so I had thought he maybe wouldn’t be quite so bad, afterall it’s the same school just a different area.  I get that he doesn’t like change but I have spoke with him several times now about how he will be going to a different classroom, will have a different teacher, will have different and more kids in his class, will wear a uniform and so on and we’ve had a couple of visits to the Prep area now too so I’m doing what I can to prepare him. Apart from when he went to Daycare, I don’t think I’ve ever seen him so negative about something.

We have another visit planned in a few weeks and I will take his camera with us so that he can take pictures and the school are going to create a social story for him and have suggested that they may have an excursion but I don’t know what else we can do.

Do any other parents of ASD children have any ideas on what else we could do to help his transition and convince him that Prep is ok?

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First There Was Hope

Today began with so much hope. Firstly J only woke up once during the night, (he decided that he wanted to get up but I managed to convince him to go back to sleep just for a little while longer), and for the first time in ages I actually got a total of around 6 hours sleep, so was feeling a little less tired this morning.  Secondly J ate his breakfast without argument, (doesn’t happen very often), and got dressed once again without argument.  Then he asked if he could make a bracelet, he likes to play with my beads so I thought why not……. he sat (yes still, in one place!) for almost an hour making not one but 2 bracelets and playing with beads. I couldn’t believe it, whilst helping him, some of the beads were a little tricky for him to thread, I actually managed to have and enjoy a quiet cup of coffee.  Then he asked if he could play with his “clay” (putty), but after 10 minutes decided he’d had enough and it was too sticky, but no meltdown. He then really surprised us and asked to do a painting, not wanting to miss an opportunity for him to willingly get messy I quickly got the paints and brushes out. He painted 4 pictures and then declared that he needed to go in the bath because he was dirty………………… That’s when it all began to change!

First he had issues with the temperature of the water, then he decided to empty half the bath onto the floor, the walls, the cabinet and anywhere else he could make it reach! Then had meltdown when he got out the bath, apparently there was still a drop of water in the bath and I had taken him out of the bath too early!

Since getting out of the bath, we have issues with what he wanted to eat, do, watch on TV and so on.  He’s been screaming randomly, throwing chairs, hitting, kicking, shouting, biting and climbing on the table. I just don’t understand what’s going on with him this week.

We usually have a few meltdowny days then a couple of “good” days but this week it’s just been one meltdowny day after another and I’m tearing my hair out!!!    It’s so frustrating not knowing what to do with him, how to help him or understand why he’s doing what he’s doing, what it is that has him feeling this way and so on…………..

Maybe it’s the weather, maybe it’s all the new rules, maybe it was going away, maybe it’s all the new people he’s been seeing……….I just don’t know…………… I’m just hoping that tomorrow it’s going to be better………………… fingers crossed

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An Explanation

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.

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Too Much?

For the past week I’ve not only been feeling rotten, (starting to feel better now)  but J’s behaviour seems to have gone into overdrive once again.

A couple of weeks ago we started going to a Playconnect group that meets locally, this is a group for parents with ASD children. The children and their siblings, (if they have any) play with different activities and toys set out for them whilst the parents, (just Mums at the moment) can chat about issues they going through with their children, help they’re accessing or whatever else comes to mind.  It’s a fantastic group, it’s great that the kids can just be themselves and as we are all parents of ASD children we all understand some of the issues that may occur and don’t feel, (at least I don’t) that the other mums are judging our parenting skills when they have a “moment”.

Anyway on Friday J had a few “moments” whilst we were at the group, then continued on the way home, calmed a little when he went to “school” (ECDP), but then started once again when I picked him up, even having an outburst in the playground.  These outbursts have continued since then, over the weekend we had a number of biting incidents, (he gave his Dad quite a nasty bite), lip licking, so making his mouth very sore, so much screaming, shouting, hitting and kicking etc that I lost count of how many incidents we actually had.

Monday I was attacked in the morning, he refused to eat at lunch and then we went to therapy.  He was pretty good during therapy, but then it ended and J decided that he NEEDED to play his own game. Of course this couldn’t happen because our time was up, cue mini meltdown………… He tried to attacked his 2 therapists, myself and then another therapist who came out to see what all the noise was about and then pushed all of the lovely receptionists files off the desk, (they went everywhere!). It was a nightmare, shouting, screaming, hitting, kicking etc etc.  Once home he spent about an hour on his computer game but then started again when I said “time for a break”, once again, hitting, screaming, kicking and even a little bit of an attempted bite. When our friend came around that evening J kicked him too, just because!

Yesterday he was supposed to be going to playgroup/daycare but that didn’t happen! By 8am I was pulling my hair our and ready to have a meltdown of my own!!!!!    He was awful, I was hit, pinched, shouted at, screamed at, kicked etc etc and that along with the constant disagreeing with everything I said, the constant whining about going to playgroup, and the refusal to get dressed just wore me down completely.

All of this was because he didn’t want to go to playgroup!!  So I gave in and let him stay with me, of course this meant taking him to the shop with me and **horror** the post office. Shop and post office = meltdowns!! and OMG they were good ones!!!

 

We started our new rules at the weekend and part of our new rule system is a traffic light board that I made and a visual board with his favourite things on. Basically he starts everyday on green and with all his favourite things and each time he has a “moment” or a “silly” as we call them at home he goes to amber and then red, when he goes to red he loses one of his favourite things, e.g computer games, for the rest of the day. Well I guess I don’t need to tell you that he’s been losing lots of his favourite things!  Yesterday was the worst and by 10am he had lost all of his things and only had his bedtime story read by me left on his chart, (something that we don’t really want to take away because we already have issues at bedtime and a story is part of his routine).  So when I took the last thing off his chart I was then “S**t now what, he’s been this bad already, now he doesn’t really have anything to lose!”  So I did the only thing I could think of, I put him back to green and told him next he would go to amber, then red and he would lose a bedtime story read by Mummy, it’s all in the wording, this way he could still have a story but Daddy would read it, (J prefers Mummy to read his bedtime story). I also told him that if he was on amber and was good for 30 minutes he could go back to green. Needless to say the rest of the day continued with him going from green to amber to green and then amber again.

We’re wondering if some of the negative behaviour is due to us trying to fit too much into his life at the moment, he’s now having therapy, daycare, swimming lessons,school, playconnect group, and of course the new rules, maybe it’s just all too much for him. It’s all meant alot of change for him and he doesn’t cope with change well and it also means we have a very busy week, maybe he’s getting tired, behaviour is always worse when tired and of course he doesn’t sleep brilliantly either.  We  discussed what we could maybe cut down on and J’s only input was “I don’t want to go playschool”, screamed at us of course, several times.

So we’ve given in, we’ve given notice to his playgroup and next week will be his last day there, (I have one more day of freedom!), J is VERY happy with our decision but even this hasn’t improved the behaviour much.  Although he’s seems calmer so far this morning.

Ideas anyone?  Are we trying to do too much? He’ll be starting prep in January, he’ll be doing 3 days a week mainstream and 2 days at the early intervention centre, (another change to deal with), so his week will become even busier then. We’ll probably end the swimming lessons for a while then but therapy will still be happening and when prep starts he’s going to have to cope, of course that means that we’re also going to have to cope with the effect it will have on him too.

Anyone got any ideas?  HELP!

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