Something Small That I Can’t Live Without #FMSphotoaday

Whoops I seem to have missed yesterdays FMSphotoaday challenge. 5 minutes after getting J settled into bed I was fast asleep on the sofa, so no post yesterday, I.was.just.too.tired.

So today I’ve combined yesterdays challenge with todays challenge, Small and Can’t (Won’t) Live Without = Something Small I Can’t Live Without………..

Small notes from my beautiful little man, J

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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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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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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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A Photo A Day For July – Animal/Insect/Pet

I chose this photo today because it kinda symbolises how slow life seems to be moving along at the minute……….at a snail’s pace. Just when we think things can’t possibly get any worse something comes along to prove us wrong. I feel like hiding away in my shell at the minute but I know all the crap (sorry) will still be waiting at our door when I emerge. *sigh*

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Building – #photoadayjuly

*Sigh*………Oh Brisbane I miss you :’(

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A Photo A Day For July – Letter #photoadayjuly

As my heart swells with pride, happiness and love I can’t think of a better day to share this with you…………

J says I love you everyday, it’s part of his routine at bedtime and when on the rare occasion that I manage to escape go out, (usually to the supermarket), on my own, but it’s rarely said with any feeling behind it. I know that J loves me, he doesn’t have to say it because the little things he does everyday show me ………………. but this little note along accompanied by a hug *sigh* ……………..words can say a million things. xx

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BIG – #photoadayjuly

A big black cloud seems to keep following us at the moment………….

 

Would you be kind enough to now GO AWAY!  

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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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