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?

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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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My Dearest Nan

This was a very hard post for me to write, those that visit regularly will know that my Nan meant a great deal to me.

Last Saturday marked 7 years since she said goodbye to us and joined my Grandad in Heaven. On that day every year since that day back in 2005 I experience mixed feelings. Over the last 7 years I’ve spent alot of time writing these feelings down and a while back shared some in a poem I wrote to my Nan, The Final Goodbye.

I know I’ve shared this story before (here) so don’t want to bore everyone with it all over again but as I’ve said (many) times before writing is how I deal with how I’m feeling. I keep going back to a few weeks before she died, we were out walking, (she in her wheelchair, me pushing), we made daisy chains, she was so happy and relaxed and when I placed a crown of daisies on her head I told her she looked like an angel………..she replied with “I’ll always be your angel”. Those words keep going around in my head, did she know what was about to happen, did she know what would happen over the next few months………..or years? My Nan had Alzheimer’s  and so at the time I thought it was simply “one of those comments” that she often made but a just few days later those words meant so much more to me and today I don’t think I can put into words just how much those words that she said to me actually mean. A few days after that outing my Nan had a stroke, she fought so hard to stay with us but it was just too hard. I told her that it was ok for her to go and that we’d be ok, she looked at me with so much sadness in her eyes I could feel my heart breaking right there. I know people say that when someone they love dies a part of them dies too, well that day a part of me did die, I was broken and didn’t know how to deal with my grief. Even now as I sit writing this I can feel a huge wave of grief washing over me, a part of me is missing and it’s a part that I can never get back.

However the anniversary of her death is also the anniversary of the start of my pregnancy with J. 9 months after I’d lost a huge part of my life, an amazing and wonderful new part of my life entered the world. In a way he saved me, I was so lost in my grief when my Nan died and I wasn’t coping, I just couldn’t find a way to move on. When I discovered I was pregnant, although cautious after 4 miscarriages, I knew this pregnancy was going to be different, this baby was a precious gift from my Angel,my Nan. I’ve always known he was special, I just didn’t realise just how special he was until recently. Going on to have another 2 miscarriages has meant me having a whole lot of tests being done, (and I’m back at the hospital next week), and I’ve been told that they’re not sure why I keep miscarrying but they know it’s me with the “problem” and that I may only have a 20% chance of having a successful pregnancy……………… See why that makes J even more special.

So with everything going around in my mind at the moment, I’ve had alot of mixed feelings about the anniversary this year. I miss my Nan everyday and if I could have one wish it would be to have just one more day with her. I know that feeling will never go away. I know that I’ve never really dealt with my grief and I don’t know if I’ll ever be able to fully deal with it. I know that I’ve often said to people that know me, J is my gift from my Nan and I’ve always believed that. But this year, with recent events in our lives etc I’ve really started to believe that. And I believe J was given to us for a reason, I needed something special and that something couldn’t get any more special than my precious boy.

Last Saturday as I watched my precious little man running around a local park, my heart smiled as I watched how free and happy he was. He didn’t know what a sad anniversary that day was but as I watched him I realised he was showing me that my Nan was free now, she’s reunited with my Grandad and her babies, she’s happy and at peace. And as I watched him those words rang out in my head once more “I’ll always be your Angel”.

I don’t know what this means, maybe it means I’m finally beginning to move on and to deal with my grief. We’ll go to the cemetery to visit my Grandparents tomorrow, I couldn’t do that last week, the feelings were too raw, it was too hard to face them but this week I feel a little more at peace with it all now and it’s all thanks to my special little boy.

My Dearest Nan,

I thank you for the gift of J

I thank you for showing me the way

I thank you for always be there

I thank you for loving enough to care

I thank you for memories to treasure

I’ll thank you for your love forever x

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Abit Of Therapy

So over the weekend J and I had a “Therapy Day”, to be honest we both needed it for different reasons.

We spent the whole day doing stuff together, we did some food therapy, used Theraputty, drew pictures, blew bubbles, did puzzles and even did some painting. It was a very busy and pretty tiring day but it was just what we both needed. J was very relaxed after his day of “therapy” and spent some time relaxing with Mario and then playing with his Dad before going off to bed. Whilst he was playing Mario I started writing some things down, just to clear my head. And then once he’d gone to bed I wrote some more. I wrote from the heart, as I’ve said before I’m not great with feelings but I like to write things out. I have a few more appointments coming up over the next month that I hope will give me some answers and maybe a little more hope……….. who knows maybe they’ll even start to heal the mind games and grief that’s troubling me at the moment.

But anyhow, this is what I wrote …………….

I don’t know if I can, I don’t know if I dare

Open my heart to begin to share 

How I’m screaming inside, how I really feel

Because then I have to admit what’s happened, it’s real

*

I try so hard to lock my feelings inside

But sometimes they’re too overwhelming for me to hide

The emptiness inside fills my heart with pain

As the thoughts in my head drive me insane

*

So many thoughts going through my mind

Trying to understand why life’s so unkind

But as the words go around they hurt my head

And inside I feel nothing, I’m empty, I’m dead

*

To lose one baby too soon broke my heart

But to lose five more has torn me apart

My heart’s trying so very hard to understand

Why we’ll never get to hold their hands

*

It doesn’t make sense, I keep thinking “why not?”

And then “Should we be happy with what we’ve got?”

But maybe, just maybe I want a repeat of the joy

That I get each and everyday from my special boy

*

But there’s a pain inside, the scars run deep

It overflows and wounds begin to weep

I don’t know what to do, again do we try?

How?   When all of our hope has run dry

*

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Not Sure What To Write……..

So, I’m sat here staring at the screen wondering what to write. I’ve got a million and one things running through my mind but can’t seem to find any of the words I want to write……… So I apologize in advance, this is likely to be another rambling post and if you want to stop reading now I’m ok with that, I’ just trying to get some thoughts out.

We’ve had a tough couple of weeks and although I’ve written some things down I’m not sure I can share everything yet. I’ve only “spoken” with a few select people about what’s been happening in the MumtoJ house but sharing and expressing how I feel is something I’ve always struggled with. I know it’s not healthy to hold feelings inside but everybody deals with things differently. I’ve kinda shared how I’ve been feeling with myself. I like to write, I’ve written alot in the past couple of weeks, it’s just my way of dealing with everything that’s happened.

It’s hard for me to express how I’m feeling but it’s even harder when you’re not sure how you feel. I have so many feelings running through me at the minute and so many thoughts that are playing games with my mind that I’m really not sure how to deal with it all. How do you deal with something that you don’t have answers for but you know is your fault and yet there is nothing you can do to prevent it happening? And whilst dealing with the mind games I still have to be Mum, I have to be happy, smiley Mum. J’s face was etched with anxiety when events of last week started to unfold, thankfully Hubby took him away from the situation before it all got so much worse. However since then he’s been double checking things constantly, he’s been much cuddlier than usual and so everything has to be ok, I have to be ok for him. I don’t want him to ever feel the anxiety I saw on his face last week again. I should point out that I have a wonderful Hubby who has been very supportive but even his love and support hasn’t stopped the mind games.

I guess it’s the thoughts playing on my mind that are eating me up, the feelings inside I’ve had and dealt with too many times before but it’s the “stuff” playing games with my mind that I’m struggling to deal with.

Ok enough rambling, sorry…………………… again! And if you made it to the end of this post, thanks for sticking with it…………again!

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Just Needed To Write Something Down……………..

I’m not really sure what to write, I not really sure what I want to say………….. in fact I’m not really sure of much at the moment

It’s been a rough couple of weeks in the MumtoJ house, in fact it’s been a rough couple of months. Right now I’m not sure I can explain it all, I’ve got so many thoughts and words racing through my head at the moment I just needed to write something down…………. anything! ‘Cus my brain may explode if I don’t write something down.

We seem to have had one knock after another and to be honest it’s getting harder to hold it all together at the moment. I’m finding it hard to understand why we’ve had to deal with so much crap, (sorry but couldn’t think of another word to use), and what we’ve done to deserve so much crap, (sorry again).  We keep fighting but there’s only the 3 of us against the world, hardly a fair fight is it? I often sit and chat to my Nan, crazy right? I mean she’s been dead for almost 7 years, but she listens and I don’t know who else I can talk to. If she were still here I know she would have understood. I don’t talk about my faith and my beliefs very often but to be honest I’m not sure what they are anymore either.

I’ve always found writing theraputic and with everything that I’ve got going through my head at the moment I just needed to write something down. I know this is abit of a rambling post and to be quite honest I’m not sure I care whether you’ve made it to the end of this post, maybe you decided to give it a miss after the first line…………. If you made it to the end, thanks for sticking with it and sorry for rambling.

Time to put the smile on and hope everything really does happen for a reason …………….. a good reason!

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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!

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A Little Bit Literal

J, like other people with Autism/Aspergers is a literal thinker.  He occasionally gets jokes (but very rarely and they usually have to be explained to him before he gets them),  and he doesn’t understand metaphors and sarcasm. At times this is funny and has made us laugh but at times his lack of understanding has fuelled his anxieties and has caused him, (and us) alot of stress usually resulting in an aggressive meltdown or lots of tears, both of which can be very challenging!

I’ve written posts in the past about J’s literal thinking (you can read a couple of these posts here and here).  I’ve gotten better at watching what I say, (whoops slipped up there hehe), but I still slip up at least once each and everyday. Sometimes the way he thinks makes me giggle, other times I get cross with myself for not thinking before I speak.

Just the other day whilst arguing trying to negotiate with him I made the mistake of saying “Sometimes you think the whole world revolves around you but……” and was interrupted by J who yelled at me “NO I DON’T! THAT’S JUST STUPID THE WORLD REVOLVES AROUND THE SUN NOT ME!”……….Smart kid? Yep he sure it, Smart Alec? Yes sometimes, Literal Thinker? Always!

Alot of people would think that his literal thinking isn’t really a problem but for J it can cause huge problems. For example, last year at whilst at school, for the first 3 terms he didn’t use the toilet at school,  instead he “held it in” and was bursting to go once he got home. This also resulted in lots of tummy aches as you can imagine.  The reason for this………….well it all comes back to his literal thinking. His teacher on a few occasions questioned him as to why he hadn’t gone to the toilet when she had told him to, he got a little upset by this and declared that he had………He had been told to go to the toilet and to wash his hands, so he had gone into the toilets and washed his hands. He had done EXACTLY as he had been told to do, but ofcourse this meant that he hadn’t actually used the toilet. (Using the toilet whilst at school is something that he still struggles with)

Something else he has difficulty with is his literal interpretation of rules………….For example one of the rules at his school this year is “Stay outside once you are outside”, J interpretation of this is once outside at breaktimes he can only come inside when the bell goes or his teacher tells him to. So if he does decide that he needs to use the toilet, he won’t because he can’t come in to do so, or if he gets “dirty” he can’t go and wash his hands because he can’t go back inside to do so.  One of the rules at his previous school was “No Shouting and when inside use your inside voice” so when he hurt himself whilst playing undercover, despite needing help he wouldn’t yell for help because it was against the rules. Instead he got upset when he came home that day because not only had he hurt himself but nobody had listened to him when he said, (in his inside voice), that he had hurt himself.

At times J also has difficulty understanding TV programs and separating what is real and what isn’t………for example during an episode of one of his favourite cartoons one of the characters was struck by lightening and became a ghost………… it was typical old school cartoon, (you know like Tom and Jerry, Sylvester and Tweetie etc), however J’s interpretation of this was, “if I go out when it’s thundering and lightning I’ll die because the lightening will get me”…………..you see the problem?

Then there’s jokes………. A friend recently told me a simple joke that I then told J……..”What’s green and sharp?”……”A blade of Grass!”………… Ofcourse we’ve had to explain this to J because his initial reaction was “Is grass sharp? I didn’t know it was sharp!” After a full on explanation he now gets the joke and he relays it to us …………….all the time! (‘Cus he’s so proud that he knows a funny joke now)

Why have I written this post? Well I just wanted to highlight J’s literal thinking. This week someone from J’s school told me that all children J’s age are literal………………I work with children and I know that to some extent alot of children J’s age are literal……………but not  as literal as J! His literal thinking (along with alot of his other quirks and struggles) is very misunderstood. Most people we’ve encountered don’t seem to understand just how literal he is. He lives in a very black and white world…………..There is no grey!

So please use your words carefully and think before you speak. Please try to remember your words may be understood EXACTLY as you say them.

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An Explanation…………Again!

So, this is a post that I originally did back in October 2010 but with a few reactions that we’ve had from a few people since coming back home I thought it was a post that needed saying again………………

So here goes……………

I’ve been writing this post for almost 2 weeks, I wanted to make sure it was right. Over the past month I received a few emails and had a few telephone conversations regarding J and the parenting skills of hubby and myself.  These were negative comments made by others, some people who “care” about us. Comments like, “we’re letting J be naughty”, “we let him get away with things” , “We’re giving in to his tantrums and so teaching him that if he has a tantrum he can get his own way”, “there’s nothing wrong with him, it’s just us”, “He’ll be fine, we should just be stricter” and so on…….. you get the picture.

These comments have had a negative effect and for the last couple of weeks I’ve started doubting our parenting skills, questioning everything I do and just generally feeling like a bad mum who can do no right. So big thanks to all those people!

It’s to those people and any others that would like to or need to understand a little more about J and Aspergers that I write this.

J has a hidden disability.  J has Asperger’s Syndrome (AS) which is an Autistic Spectrum Disorder (ASD).

This means -

J is a literal thinker, he doesn’t understand metaphors, sarcasm etc, see my post But You Said for some examples of this. J doesn’t understand social cues and most facial expressions. He doesn’t wait for someone to finish speaking, he doesn’t think twice about interrupting a conversation, if he has something to say he’ll say it and he HAS to be listened to because he won’t stop and will get louder until he is listened to. Sometimes he shouts, screams and even growls at people, just because. He can talk for hours about his computer games or Power Rangers and doesn’t understand that some people aren’t interested or are bored and fed up with hearing the same things over and over again. He doesn’t understand that sometimes he has to listen as well as talk.

He’s not being rude or attention seeking, he just doesn’t understand the unwritten social “rules” that we all take for granted.

Because of his lack of social skills, J doesn’t really have any friends, his “friends tend to be adult friends of mine or his Dad or they are much younger or older than himself, like H, (2 years) and S, (11 years). He did sort of make a friend at playgroup but didn’t understand that his friend also had other friends and didn’t always want to play his game with him and actually got quite sad about it, saying things like “*Jack* doesn’t want to play with me anymore he just plays with other kids,”  this was simply due to his lack of social skills and understanding.

J obsesses over things, at the moment it’s his computer games and Power Rangers, not only does he talk about them constantly  , he also “acts” like characters from them, reads the instruction book several times a day, (it’s his favourite “book” at the moment) and no matter what he playing with, it becomes his game complete with stages, bases, lands, levels and of course “baddies”.

J needs routine, he doesn’t cope with change. This isn’t just changes to his daily routine, it’s the way things are done, the route we take home, the order in which we do things, the way things work, if we do something in a different place and so on. For example if  we set his alarm clock before he’s had a quick drink from his water bottle we have to start the bedtime routine all over again, he changed rooms at playgroup just for a short while during one of his sessions but this caused him so many anxieties that a few months later he still checks and worries that he will be in a different room, (although he has now just finished attending playgroup), when we went to a prep open day he refused to go to what could be his new classroom because to him that wasn’t his classroom and Miss S and Miss C weren’t in there.

J has various sensory issues. He doesn’t like certain sounds, he can also make strange sounds at times. He has perfect hearing and yet sometimes doesn’t “hear” what is said to him because he has difficulty processing what has been said and organising all the sounds that he is hearing, something that most of us just do without thinking about it. At times it can seem like he is ignoring you, (and I’m sure at times he is, afterall he is a child), but the majority of the time he’s just having difficulty processing what has been said. He can get easily distracted by background noise too, a fridge humming can seem very loud to him, although we probably wouldn’t even notice it’s sound, so you can imagine how hard it can be for him at times to “hear” everything and process everything that he is hearing.

He also has “super sight”, he sees things that others don’t and can get extremely upset with you when you don’t see what he is pointing out to you. Bright lights can also have an effect on J, he often says they are hurting him.

J is also sensitive to certain smells and tastes and is extremely sensitive to touch. He smells everything and is extremely sensitive to a few smells that he doesn’t like.  He has a very limited diet, eating mostly white, very bland tasting foods. He hasn’t developed fully orally, by this I don’t mean that he has difficulty speaking, he’s extremely verbal, in fact he uses words that alot of 10 year olds wouldn’t use let alone 4 year olds. What this does mean is, he bites and chews himself, others, toys, clothes, etc…. He also licks his lips and gets a very sore mouth as a result of that. He overfills his mouth quite often because he simply doesn’t realise how much he in his mouth until he has too much in there.  As for touch, well J likes to touch everything, (usually when he’s smelling things), providing it’s not “dirty” of course. He HATES getting messy and in particular having dirty hands. He doesn’t like to be touched by others, for example if someone brushes past you in a busy shop you might barely notice it, however J will insist that someone has hurt him on purpose and will shout and scream. He doesn’t like anything to touch his head, so you can imagine how much fun haircuts are! He also has issues with clothes, at times he doesn’t like the colour or the way the material feels against his body, other times he insists that a tag or a seam is hurting him.

J also has difficulty with proprioception, (this is the sense that indicates whether the body is moving with required effort, as well as where the various parts of the body are located in relation to each other) and vestibular (The vestibular system in the brain allows us to stand upright, maintain balance and move through space.  It coordinates information from the vestibular organs in the inner ear, the eyes, muscles and joints, fingertips and palms of the hands, pressors on the soles of the feet, jaw, and gravity receptors on the skin and adjusts heart rate and blood pressure, muscle tone, limb position, immune responses and balance).  All of this means that he has difficulty staying still, in fact the only time he sits still is when he’s playing on his computer games but even then at times he has to be moving. He has an unusual bounce, he likes bouncing and jumping, it helps his body awareness. He doesn’t have great co-ordination,  he has a poor pencil grip, (he tends to grab rather than hold a pencil), he has difficulty using cutlery, (well he rarely uses it, preferring finger foods), he has difficulty pedalling a bike, using a scooter etc. He has almost no sense of danger, (although does have some fears), he climbs on everything so that he can jump off it, (he says that he’s base jumping!!). He has a high pain threshold, when he broke his collar bone earlier this year we had to wait 4 hours to be seen in A & E because he wasn’t screaming so it obviously wasn’t that bad! We quite often find a new bump or bruise, (he quite accident prone), that he hasn’t realised has happened until we discover it. We’ve been working on this with him, trying to explain to him that even if he hurts himself the tiniest bit he must tell someone, of course he’s now telling us everytime he gets the tiniest scratch, we can’t seem to find a happy medium.

J isn’t a good sleeper, he plays the usual games that most children play at bedtime, not wanting to go to bed, coming out with excuses etc, bedtime can take over an hour.Despite the warm temperature he insists on having his fleece blanket and his quilt on him and it must be over his collar bone. Once he is all tucked up fast asleep, he very rarely stays asleep, often waking 2-3 times a night and is a very early riser, he gets up most mornings between 5.30am and 6.30am.

Of course all of the above creates anxieties within J and leads to meltdowns. Please take note, Meltdowns are not Tantrums. When a child has a tantrum it’s usually because he/she isn’t getting their own way or what they want, J has tantrums just like every other child, however when J has a meltdown it’s usually due to his anxieties or his sensory issues. When J has a meltdown anything can happen. He hurts himself and others, he bites, hits, kicks, screams, shouts, scratches, pinches, opens and slams doors, throws things, smashes things……. the works. He seems to develop some kind of super strength when a meltdown occurs. J has difficulty regulating his emotions. Once a meltdown has started there is nothing we can do, we just have to try to make sure we protect him, (and ourselves) from getting hurt and simply wait until it’s over. Meltdowns can last anything from 10 minutes to the whole day. Meltdowns can occur because of almost anything and often occur without warning.

Of course these are just some of the difficulties encountered by J and ourselves, however there are also lots of positives, something we try to focus on and work with.

For example,

J is incredibly smart. At 4 he has just started recognising and reading certain written words, he can count to over 100, he can add and subtract, he knows all of his shapes and even knows the difference between a sphere, a cylinder and a circle. He knows so many facts about the human body, various animals etc you just wouldn’t believe. He can operate any computer games console and is a whizz on my desktop.

He has a great memory – he knows everything there is to know about his computer games, Power Rangers and some animals.

He has an amazing connection with animals, he loves them. He isn’t bothered by their size and colour or if they’re dangerous, he talks to them, hugs them, feeds them and so on. It’s wonderful to watch him interacting with them at the Zoo.

He’s very loyal.

He knows what he wants, once he’s made his mind up about something he won’t change it.

He’s persistent.

He’s a great leader.

He has great attention for detail.

I could go on forever with his positive so I’ll stop there, I think this post is probably long enough already. If you’ve stuck with it and have read the whole post, I thankyou for taking the time to read it and hope that it helps to “explain” some of the difficulties that J encounters and some of the difficulties that we encounter as his parents.

We know that J is going to encounter all kinds of difficulties during his life and parenting a child with Aspergers isn’t going to be easy, but we’re doing our best. We’re learning to appreciate the tiniest accomplishment, (like getting dirty feet or using a shower), we’re learning to understand some of J’s triggers, we’re trying to help him to understand feelings and social skills, we’re trying to help him develop to his full potential, we’re trying to ease some of his anxieties, we’re trying to set a good example, afterall we are his most important and influential teachers.

Most importantly we love him for who he is and we’re proud of him and everything he does.

I found this great post on Dani G‘s blog, please click, visit and read it’s a great explanation of What is Autism.

Obviously there have been a few changes since I wrote the above post but overall it sums up what I wanted to explain, I’ll write an updated version at some point over the next few weeks ;)

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Starting From The Beginning…………Again!

AARRRRGGGHHHHHHHH!

I’m so cross today! We took J to his Peadiatrician appointment today. Our letter told us that although we were going to the same clinic that we had been to previously and had seen a Peadiatrician who had refused to diagnose ASD (and in fact told us that was nothing unusual about his behaviour asking if I had considered that I may be depressed!!), we would be seeing a different peadiatrician…………….So image how our hearts sunk when that very same peadiatrician called his name!! As soon as I saw Dr W I knew that today’s appointment would be a complete waste of time!

I could feel my heart pounding, my hands shaking and my eyes starting to well up as soon as we entered the consultation room.  I just knew that the uphill battle we were already facing had gotten even steeper!

Basically we were told again that just because he was diagnosed with ASD in Australia, that doesn’t necessarily mean that he is on the spectrum! That the paperwork we had brought with us didn’t really mean much! And that we have to start from the beginning all over again…………….Yep we have to go through the whole assessment and diagnosis process all over again!!!

I don’t think I can put into words how cross we felt when we left the clinic. She might as well of told us that everything we had done over the past 2 years had been a complete waste of everyone’s time and energy! That we had wasted the last 2 years of our son’s life! And that we were just rubbish parents who couldn’t cope with a difficult child!

In all fairness the school that we chose for J have been fairly supportive and say they will do what they can to support us in getting J some support at school. J’s teacher and aide are also attending a course about how to support a child with Autism……………but a UK diagnosis was going to help them in their quest to get him support so much. We’ve also been told that we needed a UK diagnosis in order for the school to access advice and support from the Autism Outreach Team. So their hands are tied, there isn’t much more they can do without a UK diagnosis.

So where do we go from here?…………….I guess we have no choice but to start from the beginning again!

 

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