Taking A Break

Some of you may have noticed that I’ve not posted anything for a while now. I’ve decided to take a little break from blogging.

I’m not sure how long my break will be but I promise I will be back at some point.

We have alot of different “stuff’ happening in the MumtoJ house at the moment. We are still struggling to sort out and deal with Hubby’s back injury, sorry but NHS you are very slow. For the government that wants to get people into work and off of benefits, here you have a man who has been unable to work for 2 years now due to his back injury but is desperate to get his back fixed (as best as it’s can be) and get back to work…………….(and a wife who desperately wants to get him back to work and oput from under her feet, I love him but his boredom is driving me mad). Despite doing everything we can, he is still waiting to be seen by a specialist and (hopefully) fixed. His back injury has also has other effects on family life because obviously he can’t play with our son in the same way that he used to 2 years ago.  J is a very active child and has struggled to understand that Dad can’t play on the trampoline and he can’t climb on Dad etc etc and so that has meant I have had to try to take his place and J has had to adjust his play. J has ASD, adjusting his play has not been easy for him.

We have also moved house and have issues with heating etc, which hasn’t been much fun over the cold period that we’ve been having. As well as moving house J has moved school. He’s now going to a small village school AND he LIKES it…………………HE ACTUALLY LIKES IT!!!! Obviously he’s had some changes to cope with and he’s surprised us by coping remarkably well, so much better than we ever thought he would. We’ve seen a huge change in J since starting his new school, he’s much calmer before and after school, he’s talking about what he’s done at school, he’s telling us how he’s played with C or S or J at playtime, he’s eating his lunch and getting him dressed and ready for school isn’t such a big battle. All of which backs up our claim that school was causing his anxiety driven behaviour. So changing school has so far been a brilliant change and is working well for all of us.

We’ve also had Christmas to deal with, ok I know everyone had Christmas to deal with but ASD parents will understand when I say URGH!

I’ve also had some health issues myself to deal with, some of which are still ongoing but I’m not going to get into right now.

And then there’s been the whole issue of the future. Do we return to Australia? We want to but if Hubby’s back doesn’t get fixed is returning to Australia still an option that we should pursue. J has told some of the children in his class that he IS going back to Australia and we are very aware that there is lots that he misses. The education and Healthcare system works much better for J in Australia, so far it has been pretty crap here in the UK. We are still struggling to get a UK diagnosis, so far tests have shown he has difficulties but he scored one point less than needed on one test for an Autistic Spectrum Disorder diagnosis……….Guess Australia supported his needs too well or maybe he lost a little ASD on the flight to the UK. Anyway without that all important UK diagnosis he gets no help or support. So Australia would be and is so much better for J. There’s also the added bonus of an outdoor lifestyle, the weather makes that so much more possible. With the cold weather we are both constantly ill and stuck indoors. That said if Hubby can’t get his back fixed he won’t be able to return to the job that he has done all of his working life and so the question How do we support ourselves financially arises. I’d be happy to return to work but what does Hubby do?

We’ve got lots of other minor “stuff” going on in the background too. So as I said at the start of the post I’m taking a break from blogging so that we can try to deal with some of the things going on in our lives at the minute.

Thanks for sticking with me, I’ll hopefully be back soon.

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Asperger’s Syndrome – Is It Really An Invisible Disability?

Asperger’s Syndrome is known as an invisible disability and generally speaking from a personal point of view there is a part of it that is. However when I look at my son sometimes I wonder how much of what he does is really invisible, how much of his disability is really invisible. Is his disability really invisible or simply misunderstood or ignored?

J has extremely high anxiety levels. He shows his anxiety via his OCD. He panics with every tiny bit of dirt that touches him or is near him, he asks us, “Do you promise I’m not dirty now,” quite literally more than 50 times a day. He washes his hands constantly, I mean constantly, he’s actually got really sore hands at the moment, his knuckles have all cracked and even started to bleed due to him washing them so often. Sometimes he just refuses to touch things or go near things because he thinks they’re dirty or “germy”. Germy is his new word, his new phobia………………and ofcourse anything at all related to school is school germy. He’s been told by someone , (I don’t know who but I’m guessing it was someone at school because it wasn’t us and he doesn’t see anyone else), that some germs can make you very ill and so he now thinks that if he gets dirty or “germy” he’ll be poorly or could even die!

Another sign that J’s anxiety levels are rising is his chewing, bouncing, flapping and random one or two word answers/sentences. He chews toys, his fingers (another reason why they get sore), clothes and the inside of his mouth. He gets a fair few mouth ulcers due to his chewing. His bouncing and flapping can be due to excitement as well as anxiety however you can usually tell which it is by assessing the situation he’s/your currently in. For example if he was bouncing and flapping down a beach it’s kinda obvious that it’s excitement………..see what I mean?  And his speech can become quite sporadic, he can  randomly say just a word or two, sometimes he’ll make a statement of some sort, again that’s completely random and often if he’s asked questions when he’s anxious he’ll give just one or 2 word answers…………usually yes or no.  Ofcourse when those anxiety levels boil over J often has violent outbursts.

J has a social disability. For J, as a 6 yr old child this means he struggles in social situations. He doesn’t have any friends at school, although he’ll play with whoever will play his games with him at playtime. He doesn’t understand why other kids don’t want to play his game everyday, he doesn’t understand that with friendship there has to be give and take and sometimes he has to play the games of others and sometimes he’s going to lose. He came home from school last week on 2 separate occasions with minor injuries that other children had done (a whole other post!), and said that another child had accidentally punched him etc because he doesn’t understand that it’s wrong for someone to do that. He does however understand that he can’t hit back because it’s against the school rules to hit back. He just quite simply doesn’t understand how to “act” in and respond to some social situations.

J has a communication disability. I think the level of his communication disability is often misunderstood. J has excellent language skills, he uses words in his speech that children his age usually wouldn’t use, words that older children or even adults would use. He understands what most “big words” mean, for example at 3 he told his preschool teachers that they were ignorant because they didn’t listen to him. He can read almost everything that’s put in front of him, (provided it’s of interest to him). However J is incredibly literal, he doesn’t understand sarcasm, metaphors or at times even the words that are said to him and interprets them in his own way. This is the same with the written word, the school rules are a good example of this. One of the school rules that are written down and displayed throughout the school states once you are outside you must stay outside. So the majority of children would tell someone if they need to go in to go to the toilet or to get a tissue for example or they would just go in and then return to the playground but not J. If he needs the toilet and is already outside he won’t go back inside, instead he’ll hold it in and wait until he comes home or until the next playtime (if he remembers before he goes outside), because the rules say once outside, stay outside! When people say things to him or make suggestions to him he takes them as instructions, things he has to do. For example if a teacher suggests he try eating his apple peel rather than throwing it away, his understanding of that was I can’t eat apple at school anymore because I have to eat the peel and I don’t like it, so I simply can’t eat it anymore! He’s extremely fearful of getting into trouble at school and getting “told off” by his teachers and so he struggles to tell them if he doesn’t like something or if he can’t do something etc and due to this fear and lack of trust in his teachers, he releases those fears when he gets home. He tells us that he had to do something (handwriting is a biggy!) even though it hurt his hands or he didn’t know what he was supposed to do and when we ask him if he told his teacher this, he responds with “I couldn’t, I just had to do it or I’ll get in trouble!”

J also has difficulty at times processing what has been said to him. Often if something isn’t said directly to him, he doesn’t understand that he is being spoken to and may need instructions etc repeated. Often if there is alot of other things going on around him he struggles to focus on what is being said to him because unlike you or I, he can’t automatically block everything else out and focus on just that one person speaking.

I could go on and on. The point I’m trying to make is yes, Asperger’s Syndrome is a hidden disability but invisible? I don’t think it’s an invisible disability, some of his difficulties are hard to spot, hidden even but alot of his difficulties and how he displays them are so visible it shocks me that people (and I’m directing this at schools, you know those people who are supposed to educate our children!) can be so blind to them. So I’m left asking is it really an invisible disability or are Aspie needs just ignored and misunderstood?

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

I attended a curriculum evening at J’s school yesterday. It was as I expected full of useless information but I also discovered some things that J is going to struggle with. I can’t get into all of our school issues right now, there’s far too many and instead of wasting my breath arguing with them constantly and then the school not listening we’ve decided to talk to our support worker with the ESCO team and then let her deal with the school……………………..You never know maybe eventually they’ll listen to another professional rather than the people who know J best!

Anyhow one of the things I discovered was that his class may be going on a little trip to the supermarket next door to the school! His teacher (whom I have major issues with!!) explained to myself and all of the other parents that had attended the evening, that all of the children love it, it’s a popular trip, they all love the shopping experience, yadda yadda yadda………………. Can you imagine anything worse for a child with sensory needs like J?!?!

Not only will he have to deal with the anxiety of being at school but he’s also going to have to “cope” with a supermarket trip too! Supermarkets are sensory hell for a child like J and he doesn’t “cope” brilliantly with them. Once he managed to work out a way of dealing with the lights and sounds in the supermarket, he’ll have to try to concentrate and listen on what his teacher is saying/instructing the class. Then there’s the other people in the supermarket, which in all honesty is J’s biggest issue with supermarkets. Some people (not to be rude) have a very strong smell, some wear strong perfume/aftershave, some may carry something in a bag that doesn’t have a strong smell but to someone who has an amplified sense of smell it can be overwhelming. And another reason we try to avoid supermarkets with J is when they are busy, (which they so often are), people can often accidentally brush past you, however this can feel very different to a person with sensory needs. J is a child who likes to touch things, likes deep pressure, has a high pain threshold and often doesn’t notice when he bumps himself, however if someone brushes past him, that kind of touch can and has completely freaked him out, the result of which has been a sensory meltdown. I worry not only how he is going to deal with the trip but also how will the school/teacher who doesn’t have a clue about J or ASDs, deal with J if he should have a sensory meltdown and how would the rest of his class react.

I’m sure the trip is lots of fun for the majority of the children in the class but the school need to understand that not all children will and need to be prepared for what could happen, whether they “believe” it or not they have a child on the spectrum in their school who has sensory needs that need to be dealt with and supported!

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A Summer of Highs And Lows…………….It’s Been A While!

It’s been a while since I posted. It’s been a long summer of highs and lows and we’ve been very busy.

At the start of the Summer holidays I had surgery on my right hand, nothing serious, I have Carpal Tunnel in both hands and so had surgery to relieve it. This meant I was unable to use my right hand for 3 weeks and then had to slowly regain use of it, It’s still quite painful around the area now but the scar is only just visible.  It’s been hard work just doing some basic things (such as washing and dressing), and I’ve been really surprised at how much I rely on the use of my hands.

We renewed our Australian visas during the Summer. We discovered that they had just expired and so spoke to a very helpful person at Australia House who informed us that we could apply for a Resident Return Visa, which ofcourse we did. Our visas are valid for another 5 years, we were gutted to leave Australia in January and so by renewing our visas we might be able to return at some point over the next 5 years.

We opted for several days out over the Summer rather than a short holiday. J and I had a couple of days out with my wonderful friend Supersingle mum and her girls (one of which is J’s best (and only) friend here in England). We went to Wickstead Park, which is a small family fun/theme park and also went to the Yorkshire Wildlife Park. J enjoyed both days although was a little disappointed with the wildlife park. In his opinion there wasn’t enough animal interaction, I guess Australia Zoo is difficult to live up to.

 

   

We also had a few family days out, just my Hubby, J and I. We took J to Duxford Imperial War Museum, Cadbury World and ofcourse to the Seaside. He had great fun, in fact he had so much fun all trips were meltdown free!!! He loved looking at everything at Duxford and going to the Sealife centre whilst at the seaside but he was especially impressed with the cups of melted chocolate that he got to sample at Cadbury World. And ofcourse we’ve had numerous trips to feed the ducks!

Our housing situation hasn’t gotten any better over the Summer either. We applied to our local council for housing, ticking all the boxes for Housing Associations etc  (as most homes are now with Housing Associations) and so far we have been offered 2 retirement bungalows. Neither were suitable for a family let alone a family with a child that has J’s needs and were both just about big enough for a retired couple, however due to us refusing them our local council have put our housing application on hold for 6 months. Therefore we are stuck living in a house that we don’t really want to be in but it was the only house available to rent when we first arrived back in England. (It’s very hard to rent a house here when you’re previous landlord and references are in a different country!)

And after having a fairly good and relaxed Summer, (other than the housing situation and the surgery), J went back to school 2 weeks ago. He’s already had a week off sick and although he didn’t like feeling so full of cold and coughing, he didn’t mind being off school and was gutted to go back yesterday. Things have already gone from bad to worse since going back and J declared as soon as he exited the school grounds that he’s ”had a horrid day!” However then shutdown and couldn’t tell us why! To be honest I have given up almost all hope of communication between the school and ourselves ever working and it feels like they simply don’t want to help/support and that maybe it’s just too much trouble for them. Our ESCO support worker is currently on holiday and we don’t have our next meeting with her, the school and other professionals until next month. We also don’t have our next appointment with the community Paediatrician until next month either and so until then we all just have to bide our time and just try our best to make it through each day. To be honest the nights are becoming harder than the days at the minute, as well as the usual fun and games at bedtimes, J has started to have Night Terrors. He’s been waking up between 3 and 7 times a night, screaming, shouting, panicking, violently shaking, rambling and (it looks like) trying to get something off him. Ofcourse by morning despite us all being a little more tired than usual he has no knowledge of any of his “awakenings”. Not sure what’s suddenly caused them or how to deal with them either but I’m sure we’ll work something out soon.

So that’s it, obviously there’s been lots of other “stuff” but this has been our Summer of highs and lows. As we make our way through Autumn we’re looking forward to trying to work our way through “stuff”, work our way towards Christmas (not too long now!!) and getting out of our rut.

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

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To “I wish I didn’t have aspergers” linking up with #AutismPositivity2012

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

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

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

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

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

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Did We Do The Right Thing?

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

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

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

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

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

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

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

 

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Even The Kettle’s lighting Up Blue For Autism – Silent Sunday

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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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Starting From The Beginning…………Again!

AARRRRGGGHHHHHHHH!

I’m so cross today! We took J to his Peadiatrician appointment today. Our letter told us that although we were going to the same clinic that we had been to previously and had seen a Peadiatrician who had refused to diagnose ASD (and in fact told us that was nothing unusual about his behaviour asking if I had considered that I may be depressed!!), we would be seeing a different peadiatrician…………….So image how our hearts sunk when that very same peadiatrician called his name!! As soon as I saw Dr W I knew that today’s appointment would be a complete waste of time!

I could feel my heart pounding, my hands shaking and my eyes starting to well up as soon as we entered the consultation room.  I just knew that the uphill battle we were already facing had gotten even steeper!

Basically we were told again that just because he was diagnosed with ASD in Australia, that doesn’t necessarily mean that he is on the spectrum! That the paperwork we had brought with us didn’t really mean much! And that we have to start from the beginning all over again…………….Yep we have to go through the whole assessment and diagnosis process all over again!!!

I don’t think I can put into words how cross we felt when we left the clinic. She might as well of told us that everything we had done over the past 2 years had been a complete waste of everyone’s time and energy! That we had wasted the last 2 years of our son’s life! And that we were just rubbish parents who couldn’t cope with a difficult child!

In all fairness the school that we chose for J have been fairly supportive and say they will do what they can to support us in getting J some support at school. J’s teacher and aide are also attending a course about how to support a child with Autism……………but a UK diagnosis was going to help them in their quest to get him support so much. We’ve also been told that we needed a UK diagnosis in order for the school to access advice and support from the Autism Outreach Team. So their hands are tied, there isn’t much more they can do without a UK diagnosis.

So where do we go from here?…………….I guess we have no choice but to start from the beginning again!

 

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