To “I wish I didn’t have aspergers” linking up with #AutismPositivity2012

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

Read Full Post »

Somewhere To Visit…………..Maybe – Wordless Wednesday

Read Full Post »

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?

 

Read Full Post »

Handwriting And Homework Struggles with Autism

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!

Read Full Post »

Starting A New Collection – Silent Sunday

Read Full Post »

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!!

Read Full Post »

His First Tooth!

Exciting times in the MumtoJ house this week……………………………………..After just over 10 weeks of wobbling to and fro and then side to side, J has finally lost his first tooth.

When I say lost, I would like to make it clear as I had to with J, that I don’t mean that he’s actually lost it but his first tooth has fallen out! Well, I have said before that he’s a literal thinker, I should have been more careful with my words………..he was quite upset with me for a few minutes when I told him that it was very exciting that he’d lost his first tooth, then reworded it and explained that I meant his tooth had fallen out…………………to then be told “Why didn’t you say that then?!?! hehehe

Just after arriving back in the UK J’s best friend back in Australia told us that he had his first wobbly tooth. J’s immediate reaction was concern. Would his friend be ok? Would his tooth fall out? Would he bleed? After a chat about how all kids have baby teeth fall out so that their grown up teeth can grow in place of them, he was ok with it. About after his friend’s news J discovered his first wobbly tooth. After the chat that we’d had, his reaction was now excitement, in fact he declared “I’ve got a wobbly tooth, that means I’m nearly grown up now!”

Every time he’s seen someone that we know, everytime, he’s asked “Did I tell *** that I’ve got a wobbly tooth” or  ”Did you know I’ve got a wobbly tooth!” He’s wobbled it and wobbled it even more. He’s been abit particular with what he’s eaten, (yes even more than usual), just in case it’s hurt his tooth. And finally after 10 and abit weeks it’s finally fallen out!!!

Since it fell out this morning, he has several times asked if I can stick it back in………………with superglue! I’ve had to explain that whilst Mummy can superglue his toys back together, I can’t superglue his tooth back in because it would be poisonous to put the superglue into his mouth! Ofcourse this made him worry that he had gotten a little bit poisoned when he had put the toys into his mouth after I’d glued them, bless him! We got through that one only to be confronted with the tooth fairy!!

Tonight he’s wrapped it in a piece of kitchen roll and put it in a cup so that the tooth fairy will see it. He didn’t put it under his pillow because he didn’t want the tooth fairy to go too close to him or touch him, so Daddy came up with the cup idea (Well done Daddy!). We’ve had a very long chat about the tooth fairy, in fact we had several very long chats about the tooth fairy. You see at Christmas J really didn’t want Santa to come into our house and to begin with he had some concerns about the tooth fairy. Soooo the agreement we finally came up with is, the tooth fairy leaves a coin (he told us it had better be a £2 coin! lol) and will also leave his first tooth because it’s special. He has a special pot to keepsake his first tooth in but every other tooth that falls out, he will get a coin for and the tooth fairy will take the tooth to keep it in a special secret place.

Here’s hoping the tooth fairy doesn’t make a noise when she goes into his room tonight eh?

Read Full Post »

Even The Kettle’s lighting Up Blue For Autism – Silent Sunday

Read Full Post »