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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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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When The Mask Is Removed

After contacting and visiting a few different schools in our local area we finally got J enrolled and he officially started year one last week. J is only allowed to attend for 10 hrs a week because the school want to fully assess his needs and they have managed to secure funding for a teacher aide for 10hrs per week for 6 weeks. So he’s going for 3hrs, 3 days a week and 1hr for another day. He has a lovely TA who writes in a communication book everyday, telling us what he has done etc.

The school itself doesn’t have a great deal of knowledge regarding Autism but they seem very willing to learn and have contacted outside agencies for advice. Their hands are a little tied until we get an official diagnosis from a UK doctor, (we see a peadiatrician next week), once we have that they will be able to get more help and advice. However, over the past 2 weeks they have told me how well he’s doing, what a nice boy he is etc etc and how maybe he doesn’t need the support they had originally thought. Don’t get me wrong it is great to hear them say those things about my little man but a little part of me worries that this means he won’t get the help that I know he needs.

Whilst at school J is a different child, he wears a mask. He allows his anxiety/stress levels to build throughout the day, coping in his own subtle way. For J this means biting and picking the skin off his fingers, (he has previously taken several layers off and I don’t want it to get this bad again), he bites and sucks the inside of his mouth, he makes noises with his mouth and blows his cheeks up and he plays with his hands. All very subtle and if you aren’t looking for these tell tale signs, you wouldn’t spot there was anything bothering him at all.

Unfortunately once school has finished for the day the mask is removed and he simply can’t hold it together any longer. I know he’s had a tough time over the past couple of months, moving back to the UK has been such a huge change for him to deal with but over the past couple of weeks wearing the mask has made things so much worse. J’s OCD has gone into overdrive, he’s even had his TA clean his locker at school before he would put his bag in it because it was “dirty”, he’s been insisting on a bath every night because another kid in his class might have touched him and they were “dirty”, he’s asked for his uniform to be cleaned because he’s sat on the carpet at school and it made him “dirty”, the list goes on and on…………. everything he does at the moment seems to make him “dirty”! He’s already chewed a lump in his mouth and picked the skin from his thumb, which ofcourse is now sore and bothering him.

He’s also been extremely meltdowny over the past few weeks, every little thing has set him off for hours and it just seems to be one thing after another…….. his breakfast isn’t right, he’s spilt a tiny drop of milk on the table, he doesn’t want to get dressed, I used the wrong chopping board when I made him his sandwich, he didn’t want to go to school, his shirt and jumper didn’t feel right when he sat in his car seat, the weather wasn’t “right”, his fingers and mouth hurt, someone touched him at school, another kid didn’t wash their hands after lunch, the bath wasn’t the right temperature, his Mario game didn’t do what it was supposed to do, the list goes on and on. But ofcourse this is the J that the school don’t get to see. They don’t get to see how upset my little man can get over the tiniest thing, they don’t have to try to calm the screaming, violent, tearful unco-operative child. They don’t have to do that whilst suffering from sleep deprivation because J has refused to go to bed and then not slept well once he’s finally nodded off.  They don’t see us walking on eggshells because we’re so fearful of the reaction we’ll get when something isn’t “right”. They don’t share our fear when we wander just how bad it’s going to get, how he’s going to hurt himself or others.

So whilst I’m proud that J is able to “hold it together” whilst at school, I’m so fearful that this will mean that he won’t get the help and support that he so desperately needs and I’m so worried about what the future may hold for him ……………….and for all of us. *sigh*

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Sometimes It’s All Just Too Much – Silent Sunday

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More School Woes

J started this term a week after everyone else in his class due to our guests being with us, it wouldn’t have been fair to send him to the place he despises whilst we went out and had some fun with our friends would it?  So anyway, last week he begrudgingly went off to school without too many problems and I managed to have a brief chat with his new teacher, who seemed to welcome any information about J that I could give her. She also seemed to be very nice and quite understanding, for example Friday’s J now has show and share, something that he doesn’t particularly enjoy because he doesn’t like everyone looking at him and instead of forcing him to try to take part she simply said that a few other kids could go first and then he could see how he felt, if he didn’t want to do it then he didn’t have to.

Despite a not too bad week (all things considered) J has been refusing to go to school this week. We’ve had “I’ve got a cold”, “my tummy hurts” etc etc and he even locked himself in the toilet on Tuesday so that he couldn’t go to school! Out came the screwdriver, door unlocked and off to school he went. Again brief chat with his teacher and she said the she would keep an eye on him, as did his wonderful teacher aide. J had his homeschool day on Wednesday, last week he excelled and completed a workbook that I had got for him in around an hour and loved every minute he spent doing it, this week he really wasn’t up for doing anything. He was pretty meltdowny all day. I took him to the post office to pay some bills and thankfully it was empty so no huge meltdowns but very whiny, when we got home I took another workbook out for him but he only managed a couple of pages before he’d had enough. Whilst he was already feeling meltdowny I decided to cut his hair, J hates having his hair cut and this always causes a huge meltdown and so since he was already in that mood I figured we’d just get it over with, (I’ve been trying to pin him down to do it for a couple of weeks).

So a little meltdowny and whiny all week and lots of “I don’t wanna go school”. I think it’s partly due to him now going 4 days to mainstream instead of the 2 days he was doing last term. It’s a huge class, 4 times bigger than his EI class with 1/2 the staff, it’s also a much bigger room and there’s less structure. Basically he’s struggling, which I had known he would and even expressed my concerns to his teachers, they wanted him to attend f/t (5 days) but I insisted on him having the Wednesday at home because like I say I knew that he’d struggle to cope in his mainstream class.

Yesterday his new teacher was away, (for family issues) and we were informed that she would be away next week too, as her replacement they have bossiest and scariest teacher ever! She’s just awful, I’m sure she’d be great with a class of teenagers but not 5 and 6 year olds!  J has taken a real dislike to her and informed us last night that she told him off because he couldn’t put his bag on his back! He also informed us that “she’s mean to all the kids even the quiet ones”. You can imagine the fun I had this morning trying to convince him to go to school. He walked into school with me trying to calculate how many more days he had with “her”, she had told them that she was taking the class for the next 6 days, so he naturally thought that this included the weekend (the next 6 days remember?). I told him that he would be home tomorrow and on Sunday, to which he exclaimed “yes! that means I don’t have her for 2 days” then went on to inform me that he only had her for 2 more days?? I hadn’t quite caught up with him at that point so asked him why he only had her for 2 more days. He had worked it out like this, today doesn’t count, that’s 1 day, he won’t be at school Saturday or Sunday, that’s 2 more days, then he goes to school for 2 days and it’s then his homeschool day……… ta dah! 6 days in total. Needless to say he was crushed when I told him that the weekend isn’t included in the 6 days!

When we arrived at the school this morning, I was relieved to see other parents complaining to the teacher aide about the fill in teacher, relieved because for once it wasn’t just us! One parent was very concerned because she felt her child might “do a runner”, the  majority of the kids in the class are petrified of her and the parents aren’t happy leaving their kids there. For us the nightmare is, J already hates school, how are we supposed to convince him that it’s ok really and it’s not a scary place when he has someone like this taking his class?

I’m very tempted to keep him home on Monday, he has a cold at the moment………… maybe he’ll be “ahem” ill. I’m sure he won’t be the only one…………………

Maybe they’ll find someone else to take the class next week…………… please pretty please………

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All Change!

Today was my little man’s first day back at school. This school term actually started last week but our friends from the UK were here so we decided to let J have an extended school holiday. He’s been off school for a total of 3 weeks. During those 3 weeks we’ve had very few big meltdowns and only a few “mini meltdowns”. He’s also coped really well having our guests stay and has even slept through the night no less than 8 times in the last 3 weeks!!!!  We also thought we’d solved part of our bedtime battles with him, we still have the usual “I don’t want to go to bed”, “I’m not tired”, “I need a drink”…….and so on but I have been sitting with him once he’s in bed and had his stories etc. I’ve been sitting with him stroking his hand or head to calm him for about 10 minutes every night and it’s been working!! He hasn’t come out of his room even once in the last month once he’s been put to bed!!!

Last night I didn’t manage to calm him, he didn’t come out of his room but he did cry (real tears) and he did whine and several times told me he wasn’t going to school. *sigh*

Today it’s all change for him. Not only is he no longer attending EI, he is attending Prep 4 days a week (I’ve insisted he stay home on a Wednesday to give him the break he needs) but he also has a new teacher. Thankfully a couple of weeks before the end of last term his Prep teacher informed me that she was leaving at the end of term so that I could start to prepare him, unfortunately the school didn’t officially announce it until the end of the last week of term and the name of the new teacher was given to us on the very last day of term.  I received a phonecall at 9am yesterday from someone at the school asking for my email address. She then emailed a short letter for J including pictures of his new teacher, the Prep classroom, which has been changed around and the new entrance that the children are to go in. I’m very grateful to this person for taking up her personal time to do this for J. Thankyou

However, the school has been back for a week, there are a few ASD children in J’s class. Change can be hard for all children, throw a little ASD in and you have fun times…………NOT!  Other than this person calling and emailing we have had no contact with the school over the last week, I would have thought with the amount of meetings and issues that we’ve had with the school and J’s reaction to change (something that they are well aware of) that they may have taken 5 minutes out of just one of those days last week to email, call, write a brief letter………….whatever,  to inform us of the changes so that we had the time to prepare him. Instead it was left to this person to email in her own time. Again I’m very grateful and owe them our thanks.

Last night and this morning we’ve had lots of “I don’t want to go school”, “I don’t want to go in a new door”, “I don’t want a new teacher” and lots of “I hate school”. *sigh*

I’ve printed some information off that I compiled about J and about how he “copes” but then explodes at home because he isn’t really coping and gave it to his new teacher when I dropped him off this morning. I also had a very brief chat with her and explained a couple of his “issues”. She seemed friendly and receptive, it’s very early days but I guess we’ll see how we go.

The past few days has really highlighted just how hard the start of each school year is going to be for J ………. and for us. New teacher, new classroom, new routines…………….  It’s going to get easier…………………. right?

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What Were The First Signs?

The lovely Fi at Wonderfully Wired recently wrote a post about this. It also something that we’ve been asking ourselves, what were the first signs that J was wired differently and that little bit extra special?

I’ve been reading and re-reading a chapter about this in The Autism Experience, which has also had me going over things again and again in my head.

Alarm bells went off for us when J was just over 18 months old, he started to randomly bang his head. He’d be playing quite happily and then suddenly and like I say quite randomly would bang his head against the wall, the floor or anything else hard that he could find. We first went to see a pediatrician because not only were we worried that what he was doing wasn’t “normal”  and we were concerned that one day he would seriously hurt himself, we were also worried about what other people would think about the bumps and bruises that were suddenly appearing on his head and how long it would be before someone started jumping to the wrong conclusion.

As a baby J would have huge tantrums. We used to put him in his travel cot, where for a time he was safe, until the tantrum ended. By the time he was around 9 – 10 months old he would pull himself up and bang his head on the corners or the rail of the travel cot, despite not yet being able to stand unaided………….. the “tantrums” were so huge sometimes they would last for hours. I think back now and wonder how many of those “tantrums” were actually tantrums and how many were meltdowns due to sensory overload, change in routine etc  At the time we just thought that he was like us, stubborn and strong-willed, plus even as a baby we knew he was clever, maybe we just weren’t stimulating him and his interests, maybe he was bored………………….. so many maybes but maybe these were early signs.

J has always been a picky eater, even before he moved onto solids milk was an issue. Breast milk wasn’t enough and so we moved onto formula but we even had to change the formula we used……………………… and don’t get me started on how many different teats we tried before finding the “right one”. We had to use a fast flowing teat because he wouldn’t or couldn’t suck properly…………. I’m now told that he sucks and chews things because he isn’t fully developed orally so who knows maybe this was also an early sign.

When we first saw J’s pediatrician (yep the very same one that diagnosed HF Autism/Aspergers last year) J was almost 2, he mentioned Autism but J was a good talker………… a really good talker, you could have a “proper” conversation with him by the time he was 18 months old. He could talk so he couldn’t have Autism…………… right?   Wrong!  But at the time the pediatrician assured us that J was a very bright boy and had good communication skills so it was unlikely to be Autism. We had already made the decision to move back to the UK by then and so we were told that we should source out some help and support when we arrived back there. Whilst he was a great talker and we thought (at the time) that he was just smart and an early talker, looking back now I can see how “adult like” some of his speech was, I mean how many toddlers use words like ignorant?   Was this another sign?

  J was also (and still is) great at remembering things. By the time he was 2 he could tell you the name of       every Bob, Thomas and Cars character. He’s always been a collector too, everything from his toys to           toilet roll tubes. Whilst at times he’d play with them “correctly” he mostly used to line them up either on     his track or the floor and he’d always know if we had moved one……………………….and oh boy did we know it too!    Early signs???

J was a late crawler, in fact he didn’t really crawl at all, he used to roll and then commando crawled (dragged) himself around. He was a little late walking but not too late, by the time he was 16 months old he was walking, not always steady but walking none the less and by the time he was 18 months old he was running, in a very cute baby kind of way. He loved to be pushed around in his tricycle when he was little but would never attempt to use the pedals, pedalling is something he still struggles with. I’m told J has low muscle tone, I wonder if these were early signs?

J has never been a good sleeper, rarely sleeping through the night and daytime naps became a thing of the past by the time he was 2. Daytime naps were always hard work, J had to be put in his pushchair and usually wrapped up in his blanket, then he had to be pushed back and forth until he finally dropped off. Sometimes we’d do this for over an hour, until finally we gave in and no longer bothered with the naps. As a baby he loved to fall asleep laying across me in the evenings, those short naps were a godsend. He usually went to bed ok, (although slept in a ready bed for 18 months because he refused to sleep in a bed after we moved on from a cot), he just didn’t and usually still doesn’t stay asleep. He’s always been a light sleeper, every tiny noise would wake him up.  Looking back now I can see his sensitivity to certain sounds, he hated the hoover for example, certain sights, the dark and bright lights and certain smells. Then there was the biting, J was almost 2 when he started biting himself, we’d go out for the day and I’d wonder what people must think looking at this very sweet and very cute little boy with bumps and bruises on his head and bite marks up his arms. Like the head butting/head banging this was quite random but he would also bite himself and others when angry or frustrated.   Early signs??

He’s never really been great around other children either. I remember our first trip to see our Health Visitor at Clinic upon our return to the UK, I was nervous wreck, panicking about what he might do to another child. Eventually he made “friends” but they were my friends and their children, whom all but one were either older, (twice his age) or younger.

Then there was his reaction to change, he hated surprises and couldn’t cope with change, (again something he still struggles with and probably always will). When he was 2 I can remember him having huge “tantrums” in the car because I had driven the wrong way home!  Early signs??

Looking back now I can see that all the signs were there, I don’t think I could say what was the first sign, maybe all of the above or maybe the first signs were seen in pregnancy. I had a difficult pregnancy, (whole other post) and J was born a month early by emergency c-section. But I remember going for a 4D scan and it took forever to get pictures, he just didn’t like anyone looking at him and wouldn’t pose, we ended up having to go for a long walk before we finally got our pictures……….. as for those you can see him frowning and pouting on them, maybe they were the first signs

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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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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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