The Post You Write When You Have So Much To Write About, You Just Don’t Know What To Write………….

It’s been a while yet again since I posted last. We’ve been trying to deal with our “situation” at the minute.

Our “situation” is this…………We are still waiting for Hubby to see a specialist regarding his back, in fact we are still waiting for an appointment. Seriously, I cannot believe just how slow the NHS is. Until he has seen the specialist and gotten some answers we’re stuck in limbo. We need to know if they are going to do anything to fix the problem at all or if there is nothing they will do. Either way once we get some answers we can move on with our lives, make plans etc……..

Our housing situation hasn’t changed and we’ve had no luck finding another house to rent, so again we’re stuck.

However our biggest source of stress has without a doubt been school issues! It’s just been one problem after another and has now gotten so bad that there is almost no communication between us and them. That said at the moment I think no communication between us and them would be better than what we have right now. 2 weeks ago they ambushed us, they tried tricking us into coming to “parents evening” during school time and with the Head attending too……………..I know alarm bells were ringing in our heads too! Turns out we were right to query the “parents evening”, it turned out to be a complete ambush. The Head and J’s Teacher were waiting to question us and at times (it felt like) attack us. We had an ESCO meeting booked for this week, (which has now taken place) and so we weren’t willing at that time to go through all of their issues right then So told them that we would discuss things with our support worker and then everything could be discussed at the ESCO meeting, as it supposed to happen. They wouldn’t accept that and continued with their “discussion” until time ran out for them.

During the ambush we asked if the school would be applying for a statement yet. This was brought up again in the ESCO meeting. We were told that there was no point applying yet because school don’t see his need for support yet, they say he isn’t displaying any of the anxiety or behaviour that we see at home, at school.

We asked if J would have an IEP whilst at the ambush, suddenly at the ESCO meeting they pulled out a piece of paper that they claimed was his IEP. It wasn’t an IEP it was a piece of paper so that they could claim at an official meeting that it had been done. After raising the point that we’d had no input at all with it we were told to arrange a meeting to discuss what they had decided. We had our proper Parent’s Evening last night, please don’t even get me started on that or how rude his teacher is. We were told during parent’s evening that we had to meet after school to discuss the IEP that they had done (seriously not worth the paper it’s written on), and we were to bring J to the meeting too. WTF!! No we’ve asked for a proper IEP meeting ‘cus we’re getting more than a little frustrated with the school’s bullying antics. Anyway after talking with our support worker and discussing things together we’ve decided to tell the school to do whatever the hell they want, there isn’t much point having another meeting to allow them to try to bully us again, when they’re going to do whatever it is they want to do anyway.

J’s current teacher is arrogant, ignorant, rude and makes it very obvious that she just doesn’t like us. Quite frankly I don’t care whether she likes us or not, ‘cus to be honest I can’t stand the woman but how she feels about us should not impact on how J is treated in school. Everything we say, Every concern we bring up, Everytime J opens up and tells us something which we pass on simply gets ignored, brushed under the carpet and forgotten. It’s about time they started dealing with some of the issues.

As I’ve said before we have some concerns that J is being bullied. The latest injury that he came home from school with was marks and bruises up his back because (as he told us) someone punched him lots of times. The school’s response was “it’s normal for 6 yr olds”…………. This week he gave us a name which we passed on during the ESCO meeting, school’s response wasn’t we’ll keep an eye on it, oh no, we were told “if you knew **** you would know he wasn’t capable of hurting anyone”……….Really well guess what, J doesn’t lie and him giving us a name was a big deal so maybe they should keep that in mind and actually keep an eye on the situation to see if the child in question is bullying him before J decides he will take no more and hits back!

We’ve got so many issues going on with school at the moment, it’s crazy and our frustration levels are at an all time high. So right now no communication would probably be better than what we have now because I’m not sure how much more we can put up with until we have a complete breakdown with them.

Right now we need some answers from the specialists regarding hubby’s back. Once we get those answers we’ve got a plan, we know what we’re going to do. Until we get those answers we’re stuck no knowing what to do for the best, we’re stuck living in a place where we don’t want to be, we’re stuck with the red tape that this country uses for everything, we’re stuck with the frustration and our poor boy is stuck in an education system that refuses to recognise his needs and support him.

Ok I’m going to sign off now, I’ve got so much to write about but I’m feeling so frustrated right now so I’d best stop now. Sorry for “going on”, if you’ve got to the end of this post, thanks for sticking with it. I’ll try to be abit more upbeat in my next post.

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Upside Down – #photoadayjuly

18 Months ago our world turned upside down……………………and we’re still trying to get things the right way up *sigh*

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Just When You Thought It Couldn’t Get Any Worse…………..I Wanted To Cry!

Yesterday I was filled with hope……………… Hope that things couldn’t get any worse right? I mean, we’ve had a pretty tough 18 months but the last 6 months things have gone from bad to worse.

We were forced to come back to the UK, there was nothing else we could do (although looking back now I kinda wish we’d pitched a tent in a friend’s backyard and stuck it out n Oz!). Relationships have changed with family and friends, not just because we’d been away for almost 2 years but also because some don’t know and can’t “deal” with J’s behaviour and I just can’t be bothered to deal with them. That might sound harsh but I’m being honest, we’ve got alot going on at the moment which has and is causing alot of stress and I don’t have the energy to deal with those people. We have housing issues which I won’t get into right now but they are causing us alot of stress right now. We’ve had various tests done regarding our recurrent miscarriages and have been told that we may be referred to a specialist in London. Hubby is still seeing specialists regarding his back and I don’t think I could explain how desperate he is to get it fixed and to get back to work. I’m seeing a surgeon this month due to my Carpal Tunnel. We’re still waiting to see the Peadiatrician in order to get J’s all important UK diagnosis, cause obviously all the specialists he saw in Oz didn’t know what they were talking about and we’ve just wasted.

However the biggest cause of stress this year has been school! Ok so J has always had school issues and I’m pretty sure he’ll always have issues with school but this year (and he’s only been there for 4 months!) has made last years school related issues look not so bad! He’s not wanted to go, (I know nothing new there right?), he’s become so anxious about school that he worried himself sick and so had to have the last day of last term off because he simply couldn’t cope! He’s both expressed his anxieties with negative (and sometimes violent) behaviour and has completely shutdown. It takes almost 2 hrs each and every school night to convince him to get into bed due to his anxieties about school the next morning. The school really doesn’t understand Autism and in all fairness we knew this when we chose it but they did seem like they wanted to help and said all the right things etc……… ofcourse not much of those things have happened *sigh*  His current teacher really doesn’t understand Autism or J, she and a TA have attended a course about Autism but neither seem to have gotten much out of it, they say they never see any ASD or anxiety behaviours at school, so obviously they don’t see him flapping, constantly bouncing,  the literal thinking, the chewing of gaping holes in his mouth, the dirty issues he has or the lost look in his eyes. And his TA has even said to me “To be honest I don’t treat him any different, I don’t make any allowances, I don’t see the point!”……… yep those were her actual words!!!

But yesterday we met what will be J’s teacher from September. It was awful, she left us feeling that not only does she not believe in ASD but she also doesn’t want to! Some of her comments included “All parents find it hard the first time round” (she actually said this one twice) and ofcourse the comment that all parents hate “All children do that, it’s normal for children his age!” She actually made his current teacher look like she understood and was supportive!! It was so bad that I wanted to scream when we left and very nearly cried. So now we’re stuck, we can’t simply change school due to our housing situation (long story) but we have serious concerns about sending him back to his current school in September with that teacher!

Just gotta hope we can sort things out over the Summer holidays I guess………..and if we can’t, who knows what we’re going to do

 

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

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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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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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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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An Eventful Year!

I know it’s a little early but I’m going offline for a few weeks, so I thought I’d do a final post of the year, looking back at my past year.

Wow what a year it’s been!

So we started the year with the floods. It was pretty scary start to the year, the rain was like nothing I have ever seen before. We had a warning to evacuate to higher ground but by then the roads around us were already flooded and there was nowhere to go, lucky for us we live close to the top of a hilly street. Watching the events unfold sent an overwhelming sense of luck and relief through us, we were lucky, just 2 streets away homes were flooded, the main road was completely under water but “our flood” was nothing compared to other towns and suburbs around Queensland. Hubby went to help with the clean up and has said the things he saw during that time will stay with him forever.

Moving on from the flood drama our year just got worse……………………. just before J was due to start school, (which alone has been one drama after another!), he pushed me and I tore my thigh muscle. I can’t tell you how painful this was but I will say that I struggled so much with the pain and using the crutches that Hubby had to take some time off work to look after J and the house. I managed to get around slowly and with a limp but minus the crutches before J started school. *phew* He had a meltdown when we arrived at the school on his first morning before the bell had even gone and there’s no way I would have been able to deal with the situation if I had still been on crutches.

During the second week of school Hubby arrived home from work only 30 minutes after leaving the house to go to work. I was completely shocked, he’s one of those people who is never ill etc so for him to have hurt himself bad enough to come home meant he had REALLY hurt himself. The drama with his back has continued all year with an end result that we couldn’t have predicted! (I’ll come back to this later in the post)

Then we suffered a huge blow in March when I miscarried for a fifth time. Less said about that the better

At the start of the year I thought that I had started to develop some nice friendships with a couple of people here, unfortunately by mid year these had turned sour and one person in particular showed a side to them that I really didn’t like and so yet another blow was dealt. *sigh*

Just to end the year as it started 6 weeks ago J broke his wrist falling off his slide. Although this was yet another low moment it also came with a high, J hated having the cast put, he hated wearing the cast and he HATED having it took off but he coped, in fact he coped with the whole ordeal brilliantly, much better than we had predicted.

It really has been one blow after another this year but along with the lows we’ve also had a few highs. Little things this year have actually been huge highs for us that have put the biggest smiles on our faces

Little things like……….. meeting a couple of old men that my Hubby worked with, with various stories to tell that have made us giggle.

Like J actually eating a proper, hot, home cooked meal! This for me was and is one o the biggest highs of the year, J has now eaten Sheppard’s Pie more than 10 times, (once he’s eaten something at least 10 times it kinda becomes one of his foods”), it doesn’t matter that he makes himself Sheppard’s pie sandwiches that have to be triangles or that he thinks they give him “the strength of 1000 Sheppard’s” (which of course makes him stronger than Dad hehehe), HE EATS IT!

This year J has also learnt so many new skills including how to move his arms in order to swim, how to hold a pencil with less than 4 fingers, how to read, how to pedal properly, (this year he finally started going around in a full circle with the pedals), how to get himself dressed (top and bottoms, next year we’re going to work on buttons and socks), how to use cutlery correctly. The list goes on, he’s done amazingly well this year and all of the little things added together has meant he has made huge progress with his development of skills he was/is lacking in.

Our proudest moment this year was during the last week of school. J has only ever attended 3 parades/assemblies at school, they’re just too sensory overwhelming for him, so just imagine if you can how proud we were of him when during the last week of term not only did he attend the parade but he also got up on stage with the rest of his class to perform Rudolph The Red Nose Reindeer AND sang the whole, entire song!………………WOW Definitely the biggest high of the year

As this year is coming to an end, I’m sad to say it’s ending as it began. The powers that be have decided that they can’t do anymore to fix Hubby’s back, nor can he go back to work until it is fixed. Unfortunately our circumstances mean that we’re pretty much being abandoned by Australia and so have to return home to the UK. It’s certainly not something we wanted to be doing but we’ve been left with no other option and so I will be offline for a little while whilst we get everything sorted, (there’s so much to do!). All we can do now is to try to enjoy one last Christmas in Australia, make the most of our time left here and plan for the future.

Well that’s it, the end of our year, here’s hoping next year will be filled with a few more highs and not so many lows.

All that’s left for me to say is MERRY CHRISTMAS and (I hope) HAPPY NEW YEAR!

Happy Christmas Everyone!

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Roadtrip!

We arrived home yesterday from our little roadtrip, all a little tired and sad to be home.

The journey to our destination was a long one, J was in a terrible mood which continued on throughout the day even after we had arrived and unpacked. Last week was the first time he had attended 3 full days in a row at school and I think it just wore him out, which resulted in a tired and VERY grouchy boy pretty much all day Thursday.

However he woke up Friday feeling and looking much happier, a huge relief for us because we had another day of driving around and it would have been a nightmare if little man had been in his bad mood again! We drove around various little towns/suburbs, checked out the local schools, visited the local tourist offices to get information about the area and just generally checked out the whole area.

  

 

 

 

 

 

 

 

 

Saturday we spent the morning doing pretty much the same thing and decided (despite the threat of showers) that we’d get some chips and let J spend some time on the beach. He’d been so good we thought it would be fair to let him have some fun

 

We were very sad to leave on yesterday but returned home with the knowledge that this was definitely somewhere that we’d like to consider moving to.

As for today………… well it was back to the same old, same old………………. J insisting that he was sick and couldn’t go to school, appointments with doctors, surgeons and therapists………… and back to my little addiction to coffee

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