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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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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Building – #photoadayjuly

*Sigh*………Oh Brisbane I miss you :’(

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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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It’s Almost Here!

After a comedy of errors and rather alot of stress our container containing almost everything we own is almost with us.

The day of removal/packing didn’t go brilliantly and we still have an unresolved issue with our removal company, something that I can’t go into at the moment, but needless to say it’s an issue that’s been (and still is) causing us a fair bit of stress. Our shipment/container was supposed to be on it’s way to us almost immediately after being packed and should have arrived in England around the 4th March. Obviously it’s April now, so you may have already worked out that, that didn’t happen! Nope in fact we’ve had to fill out all of our customs forms again because it’s come over on a different ship etc……. And to top things off the removal company in Australia didn’t label some of our “packages” correctly and so this has also provided more problems now that it has all arrived in England!

We’ve been back in England for 3 months now and although it’s gone really quickly and we’ve been extremely busy, we’ve started to miss little things. I’ve started to wonder if we packed the right things in our suitcases. We packed 4 cases, had 3 rucksacks crammed full as hand luggage and I had the biggest handbag I could find, as well as coats………….can you imagine the 3 of us (well 2 really, ‘cus J didn’t actually carry anything) trying to navigate check in at the airport and arrival in England with all of that luggage?!?! LOL

In the suitcases we packed the obvious – clothes and a few special toys, but we also had to pack J’s car seat, he refused to get a new one or sit on a borrowed one so we had to pack his. This took up most of the space in one case. We also had to pack J’s pillow, just packing his pillow case wasn’t an option. We tried changing his pillow before we left and he refused to sleep on it ‘cus he knew it wasn’t his pillow and so decided although we were going to have our sleep issues there was no point in making it worse, we packed the pillow………………….this case I had to sit on in order to close it! And ofcourse we had to pack J’s Ready Bed, we also packed sleeping bags for ourselves, (they took up less room and weighed less than blankets or quilts). We also packed a few of J’s “therapy” items such as his bodysock and his therabrushes. As for toys, somehow, (I’m not sure how), we managed to convince J to only pack the essentials………….his Mario figures and castle (obviously!) and a few special toys and books. And clothes………..we knew it was probably going to be cold, much colder than we had been used to for the past 2 years so we packed several jumpers……………..Do you know how much room jumpers take up in a case?!?!  Hand luggage was taken up with J’s laptop and Ipad and all of Hubby’s medical notes and J’s medical and school notes.

When everything was packed we were just over our baggage allowance so couldn’t possibly pack anything else but over the past couple of weeks I’ve started questioning whether we packed the right things. All of J’s medical notes and school notes haven’t made a blind bit of difference and we’ve been told his Aussie diagnosis and everything we’ve done with him over the past two years is worthless and not valid in the UK, (Ridiculous right?!), so was it worth packing? We started missing alot of things too……….. J is obviously missing all of his toys and books and ofcourse the Wii, (he’s really missing the Wii!), but we’re also missing our beds, airbeds are ok for a while but Hubby’s really struggled to sleep on one and is now “sleeping” on the floor because it doesn’t hurt his back so much and J misses his bed…………….me I’m happy just to get some sleep, I don’t care where I have to sleep, just so long as I get a couple of hours rest! I miss my computer and I really miss my big fridge freezer, I miss being able to do a proper weekly grocery shop and it’s costing a fortune having to go to the shop every other day, (we’ve bought a small fridge since arriving back just to keep milk in etc). I miss my wardrobe, wearing the same clothes every week is starting to bore me. And I miss my photographs! Some of them contain precious memories and it’s a horrible feeling knowing that they’re somewhere out there floating on the ocean, you just have to hope that everything will get to you in one piece.

Our container has been in the UK for almost 2 weeks now and we’re hoping Customs won’t hold it up for too much longer………….it’s going to feel like Christmas when everything arrives!……………..Then we have to have a clearout, we’d forgotten how much smaller houses in UK are!!

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The Gallery – Light

I took  these pictures on one of our last nights in Australia.

 

The light from the sun setting made the sky go a fantastic colour…………it was simply beautiful!

 

Why not pop over to Sticky Fingers to discover more pictures of Light

 

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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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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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It’s Beginning To Look Alot Like Christmas………..

Yes it is…………………… and no it’s not!

Wow it’s December already, it’s crept up very quickly this year.  Like last year it just feels different and I’m not sure how I feel about it.

J isn’t a huge fan of Christmas, he loves to decorate the tree and to open his (and sometimes ours) presents and cards but that’s about it. He’s absolutely petrified of Santa and has put a complete ban on Santa visiting. He’s told us Santa is not allowed in the house and can leave his present at the door…………outside! He’s having to do lots of Christmas art at school which he isn’t enjoying, art is something he’s never really been a fan of, especially messy art and because he has to do it at school, it’s no longer fun at all for him. He won’t join us with our Christmas lunch, although he will still sit with us whilst he eats his usual cheese sandwich that has been cut into triangles. So you see he’s not really a huge fan of  the Christmas period.

There’s a huge difference in weather for us too. I know we celebrated last Christmas in Australia but we had so much rain and then of course the floods, for over a month now it’s been unbelievably hot and dry and well…………………. it just doesn’t feel like Christmas to me. I think it’s because I’m so used to having a cold and frosty run up to Christmas. Despite the rain last year I felt pretty much the same, I even sat and watched a huge collection of Christmas movies and cartoons with J. I did this for 2 reasons, the first was to try to get him more enthusiastic about Christmas and the other reason was to try to help me feel more Christmassy. Did it work? No not really, but he did enjoy the movies

We’ve had abit of a bad run of luck this year too and have some pretty huge changes coming up right at the start of 2012. Maybe thinking of and working our way up to and through the really huge things going on at the moment is also contributing to my lack of Christmas spirit. We’ve even decorated our tree early this year, which was great fun but still didn’t get us all in the seasonal mood.

Yes, that is an Angry Bird on the top!

I just can’t put my finger on it but at the moment I just don’t feel all that Chrismassy, which is really unusual for me. I’m usually a big fan of Christmas, growing up my Nan always made Christmas a very special time of the year for me, of course it’s also this time of the year that I miss her the most. I miss spending my special time with her, taking her Christmas shopping etc. When think about it I guess I’m also missing some of my family and friends back home, I suppose it’s just that time of year.

I know it’s still a couple of weeks ’til Christmas but by this time I’m usually full of Christmas joy, I hope we can all get a little more Christmassy over the next couple of weeks and make this Christmas extra special for all of us but especially for J.

 

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Wordless Wednesday – A Quiet Place

Linking up with My Little Drummer Boys this Wordless Wednesday

 

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