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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Not Autistic Everywhere!

So, we are off to see a Paediatrician on Friday. It’s a big day for us because despite J having an official diagnosis for 18 months, it was a diagnosis given to us in Australia. We brought back with us every piece of paperwork we had, in fact one piece of our cabin luggage was just J’s medical notes, OT Reports and even school reports, including a copy of their verification of diagnosis of ASD. Despite all of this we’ve been told that his Australian diagnosis isn’t valid in the UK and “just because he was diagnosed over there doesn’t mean that he will get the same diagnosis over here”, yeah ‘cus he suddenly became NT on his journey back to the UK!!!

I’m genuinely concerned about our appointment. You see although we are supposed to be seeing a different specialist, we have to attend Dr W’s clinic. Dr W being the “specialist” that told us there was nothing wrong with J’s behaviour and that it was all me because I was depressed! Do you see why I’m concerned? Surely if he has been diagnosed with Aspergers Syndrome / High Functioning Autism in one country, it should be a valid diagnosis in another country. But what happens if the Paediatrician we see doesn’t give us that all important UK diagnosis? Where do we go from there?

J has only been attending school here for 2 weeks and that’s only been for 10 hrs a week, having a TA (whom he likes!) with him at all times and already he’s not coping. Already they’re (the school) are missing those all important anxiety signs, the biting and sucking of his mouth and fingers, the funny noises he makes with his mouth, picking the skin off his fingers and so on. All very subtle signs but as he won’t ask for help or admit that he can’t do something or isn’t happy to do something, these are very important signs that need to be looked for. Instead he’s building his stress levels whilst at school and seen to be “coping” but then letting loose at home……….And I mean letting loose. This week I’ve once again had to seek medical attention due to an injury that J has caused me mid meltdown. I don’t know how we’re all going to cope next term when he has to start attending more hours.

At the moment we’re told because he isn’t displaying the negative behaviour at school they can’t see the need for an aide, without our official UK diagnosis he doesn’t have any hope at all of getting any help. Again as I said in my last post I understand where the school are coming from, if they don’t see it, it’s hard to believe, I get it, really I do. However I wonder if part of the problem is also their lack of understanding of Asperger’s and if maybe that’s why they’re missing the tell-tale signs that his anxiety levels are building. I’ve heard so many stories similar to ours of Aspie kids wearing a mask whilst at school, acting, “holding it together”, “coping” and then releasing when they get home from school because they’re just so exhausted and stressed. And Aspie kids, (older than J), who have missed vital parts of lessons because they have are so exhausted just trying to hold it together that they can’t possibly even attempt to take in what is being taught, it’s just too much for them. And I KNOW this is the struggle that J is dealing with.

We have a school not too far from us that specializes in all ASDs, which would be great for J. They’re specially trained professionals who would know what signs to look for, who would know how to cater for J so that he would have a better opportunity to reach his full potential, (he’s a smart kid…..really smart), but without that all important UK diagnosis he wouldn’t be able to attend.

So we’re hoping that all of our paperwork will be enough, of course the icing on the cake would be if J is having a bad day because then the Paediatrician will really get to see him full on………………Let’s hope so, without the right help and support I wonder how bad his meltdowns will get when he’s a little older and bigger and how long he’ll be able to wear the mask for before it slips. When that happens, without our UK diagnosis he’ll just be a naughty kid, whose parenting should be better.

Surely if we were given the diagnosis in Australia, we’ll get the same diagnosis here?

 

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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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“I Don’t Want To Go To School!” – Wordless Wednesday

I’m linking up with Trish at My Little Drummer Boys

 

 

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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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A Mixed Bag………..

We’ve had 2 meetings this week both of which have created a mixed bag of emotions.

The first meeting was with a new OT, The OT and Speechy that we were seeing at the end of last year was a complete waste of time. Alot of our funding was used up and no progress was made, no sensory diet created………nothing. We were under the impression that this was one of the only places in our area to go, that accepted the funding, however at the beginning of this year we found a wonderful new Speech Therapist who in a short space of time has already helped a great deal and J responded well to her. It was her that gave us the details for J’s new OT, yes we will be seeing her again!

The OT that we met with was very switched on and (we felt) knew exactly what she was talking about and within 10 minutes of observing J whilst talking to us she had already picked up on a couple of J’s quirks/issues.  (very impressed)  During our hour with her she discussed the possibility hat J may have some ear problems that we should look into, he gets alot of ear infections and that along with a few of his “issues” could mean that there is a problem. This raised alarm bells with us because as a baby J was admitted to hospital overnight because he was unwell, when the Doctor “did his rounds” the next morning we were told that J had a narrow ear canal but because he was so small it would “sort itself out”, so ofcourse we are now asking ourselves if we should have pushed to investigate it further and if it is related to some of his ear issues now. The same Doctor also did some tests on J’s gut (that was the reason he was admitted overnight) and we were told that his bowel was slightly twisted but again because he was so small “it would sort itself out”. The OT that we met with this week feels that J could also have some gut problems, and so again we are wondering if we should have pushed to have it investigated further at the time…….. I guess when the experts tell you it will be ok you believe (or want to) that they know what they’re talking about and so leave it at that. *sigh*   Anyhow she has recommended that we see our GP and get a referral to a Dietician/Nutritionist, an Allergist and to get his ears sorted. Unfortunately we don’t have the best GP and so before we can sort all of the above out I have to search out a new GP……………..asap!  On the upside we were very impressed with the new OT and despite it being abit of a drive to see her we will definitely be going back to her

Our second meeting this week was not so great………………………. you’ve guessed it …………. the school!

It started badly when it was assumed Hubby would be outside playing with J and not part of the meeting…………….. he became a little cross at this suggestion and let rip at the Psychologist who went outside to chat to him. I should point out at this point that this was Psychologist who had been invited to the meeting despite the fact that she had never met any of us before and as nice as she was, she didn’t know any of us or anything about our situation. Also attending the meeting was the Principal, who had also never met any of us before, (I guess in a school so big it would be hard to know every pupil but since they get extra funding because J attends you would think they might make an effort to know who the special kids are that they are getting the extra funding for).

Anyhow once Hubby and everyone else was inside the meeting began. We tried to explain some of the issues we had been having and some of the things that J had told us but yet again felt like we had wasted 90 minutes. We told them that J had informed us that *Billy* had been mean to him and was bullying him, the response we got was smiles and nods……………. if they know it’s happening why haven’t they addressed this issue?!?!?!   We went through various issues with them and basically got the general feeling that we weren’t being listened to at all. We felt like we were going around in circles…………………… To wrap the meeting up the Principal asked if they were to work on the food thing and if that was what they should be doing………………….. I responded with “Well just getting him to school should be first!”        Do you see why we felt we weren’t listened to at all, how on earth did she get that his food issues were something to be worked on first when we had been explaining some of J’s issues with school and just how much he doesn’t want to go school and some of the behaviour we receive as a result of him not wanting to go to school?!?!?

Anyhow, we’re now counting down the days until we go to see the Surgeon about Hubby’s back and hoping for good news, (although the way this year is going so far, maybe we’re hoping for too much). After we have seen the Surgeon and we know what’s going on with Hubby’s back we will be making some important decisions about our future. If we get the good news that we are hoping for J may be ending his time at that school sooner rather than later and when we are searching for his new school we will be taking with us a list of questions to ask the school and a tick sheet of requirements, (smaller class sizes will be top of the list, as this is one of J’s biggest issues with his Prep class). Until then we just carry on as we are and wait and see……………………….

Oh and J is off school again today, because when you’ve been up most of the night and you feel the way that Hubby and I are feeling about the school, when you have your child screaming, crying (real tears, not the temper tantrum type) and physically begging you not to make him go to school, you’re just too tired and heartbroken to fight………….. what would you do?…………………………….. maybe I should ask his teachers that next week!

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