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.

Read Full Post »

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.

Read Full Post »

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?

Read Full Post »

Am I Relieved Or Sad?

Am I relieved or sad? It’s a question I’m asking myself today.

Today was supposed to be J’s sports day, his school have decided to hold it in September rather than next Summer?!?!

Anyway due to the rain it’s been cancelled but I’m not sure if I’m sad or relieved. Last year at J’s sports day/carnival he struggled with most of the events but the school had a few children who like J had additional needs and at the end of the day they put all of these children in their own running race to give them a fair chance at winning a ribbon. J came joint third and was very proud of himself. Had he been racing against the other children in his class that didn’t have any additional needs this probably wouldn’t have happened. J loves running and jumping, in fact he has great difficulty staying still, however the only time he is ever able to run fast is when he’s trying to escape. This presents 2 problems, the first being that he would struggle to keep up with the other children and the second being, J does not like to lose.

This year J tells us that he is to compete in the 50m hurdles and a relay race. So I’m not sure if I’m relieved or sad that it’s been cancelled. Relieved because if he doesn’t come 1st, 2nd or 3rd, I don’t know how he will react. I know he’ll be upset, 1st, 2nd and 3rd place children will receive a gold, silver or bronze award and I know he’d be gutted if he didn’t receive one of those. But I’m sad because we won’t get to cheer him on, we won’t be able to get it all over and done with and we won’t get to celebrate him doing his best (I have our own certificate all ready to print, just in case he doesn’t get an award/certificate).

I know it’s great to celebrate our children winning but what about all of those other children? The children whom despite trying their absolute best they just can’t keep up with the rest of the children, the ones that never win the gold silver or bronze. I wonder how they feel when their efforts don’t get rewarded and how much of a bashing their confidence takes. Why can’t schools celebrate the effort of all the children, even a small gesture such as a certificate congratulating them on their efforts would be appreciated.

Read Full Post »

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!

Read Full Post »

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.

Read Full Post »

A Photo A Day For July – Plate

J tells me he’s not a Thomas fan anymore because he’s for babies……………………………..

So he absolutely, definitely doesn’t like Thomas anymore………………this just happens to be his favourite plate and he can’t change that even if he doesn’t lie him anymore! LOL

 

Read Full Post »

A Photo A Day For July – Texture #photoadayjuly

We have alot of different textures in our house, J is a sensory seeker and loves to touch things. One of his favourite things to do is to lay on the floor brushing his face or hands across the carpet. In fact he loves doing it on the bathroom mat so much we got him one for his bedroom

Read Full Post »

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

Read Full Post »

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

 

Read Full Post »