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Archive for the ‘Autism’ Category

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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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 wondering is it possible to worry yourself sick?

J has had a rough time recently, he’s had to deal with everything that been happening at home, (although he doesn’t know the full story, he’s still had to deal with it), but he’s also had to deal with his biggest anxiety………. SCHOOL!

We had a great weekend last week and both bedtimes lasted for less than an hour…………….the Sunday night happened and every bedtime since then has been pretty hard going.

This has been a tough week for him at school. Monday he went to his first proper planned assembly/worship. Not only was this a huge thing but even before going there he had to deal with a big change……….. Every morning J has been dropped off at the school’s reception and taken through to his classroom, on Monday he had leave 1/2 an hour earlier so putting his morning routine out and then he had to go into school through another entrance, straight from the playground into the classroom. Now I know to alot of parents this might not seem like a big deal but parents of ASD children will know this was huge………..really HUGE and alot of change all at once for him to deal with.  He seemed to deal with it “ok” but by bedtime he was showing signs that he wasn’t “dealing with it” quite as well as I’d thought.

Then on Wednesday he went in early again this time to have some one on one time with his teacher whilst the rest of the school were in assembly. Again he went in early, and through the door he usually exits school. However this time he had been promised that he wouldn’t have to go to assembly…………………………the first thing he reveals to me when I pick him up that afternoon is “And I did have to go to assembly so you and Mrs H lied to me!” He wasn’t happy about it! What had actually happened was he and his teacher had taken his class to assembly, where he had sat with them for a few minutes and then once they were all settled J and his teacher returned to the classroom for their 1:1 time. Ofcourse he wasn’t happy, he had been promised that he wouldn’t have to go to assembly and then he had been taken to assembly, despite not having to stay ……………. I can see why he thinks we lied. *sigh*.

When I picked him up from school on Wednesday we were also informed that his teacher would not be in school the following morning and that J would have a supply teacher for his 2 hrs at school. Sometimes I wonder what some people must think I mean when I say he needs to have prior notice of changes. Ok, so I know some can’t be helped, people get sick etc but she was going on a course. I just don’t understand why they couldn’t have said something earlier in the week, instead we had almost no notice. J had a really tough bedtime and then morning. Yesterday he had a huge meltdown claiming to be dirty (which is part OCD and a huge part a way of showing his anxiety), he had tears, yelling, constant asking if he or the things he touched were dirty and then refused to touch anything, he sat on the bottom step with his hands in the air. (In fact, thinking about it, his “dirty” quirk has been a little overboard all week!)  A few times before leaving for school he asked “what if the supply teacher doesn’t know that I’m not having lunch at school and doesn’t let me come home?” and “What if the supply teacher makes  me do something that I can’t do?” and …………..well you get the picture.

Today it’s the schools Jubilee Party. This should be a fun thing but for a kid on the spectrum it can be hell! His first panic was clothes…………. the children have been asked to wear red, white and blue…………. J’s first response, “but my school uniform isn’t red!” (he wears a blue jumper and a white t-shirt) and then “I can’t wear my clothes, I have to wear my school uniform!” after we tried to explain he could were whatever clothes he wanted to school just for one day. After several conversations we gave up and told him he could just wear his school uniform and red boxers ;) One problem solved, we thought. Next worry was food. The party will be after lunch and there will be sandwiches and ice lollies…………. J’s response “But I don’t like ice lollies and we have to eat them Mrs H said everyone will be having them!” And “What if they have dirty hands when they make the sandwiches? They’ll (the school) get cross with me if I don’t eat them!”  Convinced his teacher to tell him he doesn’t have to eat anything if he doesn’t want to. I thought problem 2 was solved, now I’m not so sure. Next problem, “What if it’s too loud or if someone touches me?” …………………. ok the issues regarding today have gone on and on this week.

However last night he suddenly became ill. Coughing and saying his head hurt. He was awake several times through the night and then up at extra early this morning but just seemed very lethargic and lay on the sofa for the first hour of his day. He did however mention school several times too, asking if he had to go, if he was too sick to go, if the party would make him feel “more poorly” etc etc…….So I’m wondering is he really sick or has he made himself sick with anxiety. He had a temperature and you can’t fake that ………… right? …………… I don’t know but I’m wondering. He has had a really tough week with alot of changes and alot of “stuff” so I really am wondering if he’s worried himself sick. He has made himself  sick with worry before, again over school so I just don’t know.

Anyhow as it’s the last day of this half term and most of the day is the party so I’ve decided to keep him home, hopefully he’ll relax a little over the next week and start to feel a little better.

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

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

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

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

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

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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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I know alot of children struggle with homework but when you throw in abit of Autism and you have a big problem………….well in the mumtoJ house you do anyway.

J has low muscle tone and really struggles with handwriting. He tires easily and complains that his hand hurts. So handwriting is quite a big issue for J. We’ve been working on that and strengthening his muscles by drawing mario characters and writing their names underneath, making playdough models of Moshi Monsters, writing in shaving foam, using theraputty and squeezy stress balls and so on. The key has been to use and do things that are interesting to him.

Until recently I wasn’t too worried about his reading and writing skills, we had previously been told by his teachers in Australia that he was a great reader and we’ve read to him since he was born, he’s always had books in his life. In fact at times when I’ve read his stories to him, he’s corrected me when I’ve missed a word out or said something different. So I wasn’t too worried I had thought “yes he struggles with his handwriting but that was because of his low muscle tone however he knows all of his letters and can read well”.

Recently his teacher here in England has told us that J is struggling with his phonics and he was sent home from school at the end of term with some homework to complete over the school holidays. He had around 20 words to read and then has to write a sentence for each word………..Over the past 2 weeks I’ve managed to get J to write 6 sentences and I have a feeling that he won’t complete his homework by Wednesday, when he returns to school. This homework has actually highlighted to me just how blind I’ve been. I’ve been shocked at how much of a struggle reading the words he’s been given has been for him. J is very literal and I hadn’t realized that this would have an impact on his ability to read words.  The first word on the list was cake. On his first attempt he said c.a.k.e, pronouncing each of the lower case letters. I asked if any of the letter had another sound……he then read it as ceaykayee, so we had a long “discussion” about how sometimes we might use one sound for some letters and the opposite for others………..third attempt (with encouragement) was caykee…….this went on for some time until he gave up saying “if you don’t say the e why does it have one?”  …………….. He’s had this problem with most of the words and there are some that he won’t even attempt to read.

Problem number 2 is failure. Failure is not an option for J, if he thinks he won’t be able to do something, he simply won’t do it. So not being able to read some of his words has meant that he has simply refused to do his homework, that way he won’t “fail”. It doesn’t matter how many times we tell him “well done”, “good try” and so on, in his head he can’t do it so he won’t do it!  And don’t even get me started on the anxiety he’s felt and expressed over the possible failure!!

Problem number 3 is that the words he has been given are of no interest to him at all. I’ve tried to make them Mario or Moshi related but it just hasn’t worked. One of his words was like so I asked him to write something that he liked. He replied with “but  we don’t do Mario at school”……….cue another “discussion” and eventually I managed to get him to write “I like Mario.” With J if something isn’t of interest to him, it’s not worth bothering with and he will make zero effort!

Problem number 4 is homework is schoolwork! And ofcourse in J’s eyes, schoolwork is something to do at school, not at home. And in J’s eyes he’s on the school holidays so why am I making him do schoolwork?!?!

If you put all of that together and add the way J feels about school…………we have a big problem! :(

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