Snippets of hair!

This is a bit of a nebulous blog, however, I want to celebrate the fact that for the first time ever, my Nick had a haircut that didn't involve any snot or drama!!  Plus, I want my mum to see the latest video footage (she has been witness to a couple of 'Nicky haircuts' and believe me they weren't pleasant!!). To put it very bluntly, all previous haircuts have been a bloody nightmare!

A lot of factors played a part in today's visit to the Barber Shop!  Nick has been indicating to me for a few days that he wants a haircut........... amazing!!!  A facebook friend called Valerie (love her blog!) posted a photo of her child having a haircut - he had a towel wrapped around his shoulders. *light bulb moment*.  The amazing Kids First team spent the morning cutting little bits of hair off his head (a snip here....a little while later....a snip there!). Mind you, Judy managed to take a huge chunk out of his fringe which meant I couldn't chicken out of doing the deed - I HAD to take him for a haircut! :)

As luck would have it, we found a car park at the entrance (generally not possible) and the Barber Shop was quiet (generally very busy).  Thomas was also with me which meant he had his trusty cell phone - that wonderful little thing that we pull out when life gets a bit difficult for Nick!

We gave Nick the option of clippers or scissors.  He was most adamant that he wanted the scissors - phew, relief - if he had said no to the both of them, I am not sure what we would have done :).  He was also happy to have the towel around his shoulders (thank you Valerie x).  Obviously the cell phone was the winning card that kept him going but it's a start to building a positive memory of the whole haircut experience! 

Look, the haircut was not easy and there was quite a bit movement from Nick and I also got the odd little pinch, BUT for the first time ever he didn't scream or cry.  Nick coped very well, as did Linda who had the job of cutting his hair!  


Supermarket discoveries!

Our 'Kids First' home is getting a lick of paint, although it is taking a while to complete due to the painter only being available at the weekends!  Sampson (the painter - can highly recommend him by the way!) has a nasty habit of  sending  me a list of goodies to buy at the most inconvenient time (like a Friday afternoon!!!).  However, as luck would have it, Thomas had to miss tennis - has tennis elbow of all things!  Therefore, I had this brainwave of taking both boys to the supermarket and Thomas could film me and Nick 'doing stuff'.  Hah,  I knew as soon as we the joint..... that it wasn't going to go as smoothly as I hoped.  Nick took the trolley and headed in a different direction to us and there was no way he was coming back! Sometimes you just have to go with it!!! Mind you, when it came to being with me and 'doing stuff' he did great! :)

The following clip shows a few things...... 
  • I have been working on simultaneous interactions with Nick - he needs to coordinate his actions with my actions.  This has been a hard one for Nick and we have been practising it a lot over the few last few days. It is also the first time that I have used this particular pattern at the supermarket and he is actually doing very well, considering all of the hustle and bustle and those crazy distractions!
  • A section of the footage shows a woman walking past the camera and stopping to look at what we are doing (I edited out the bit where she stuck her face into the camera and said "are you authorised?").  I left this piece in as a reminder about how my attitude can make a difference to someone who is being hostile!!  This has happened to me before at the supermarket, where I have been told to stop filming -and on that occasion,  my conversation with the security guard got quite heated and I left feeling angry!  This time, I thought it best to remain calm!!  I said 'my son is a special needs child and I am filming him", she immediately says "you are filming him for school?" ........... BINGO! "Yes, I am filming him for school".  I do find people a lot more understanding if I give a quick explanation about my boy - rather than getting on the defensive about the unwanted attention!
  • You will also see Nick wandering off and he wouldn't come back to us when we called or gestured to him - we had to go to him, touch his arm and he would then come back to the trolley.......... Thomas was getting increasingly irritated at this and he said to me "Mum, you really need to set some boundaries".  I do agree with Thomas, however, it is all very well setting boundaries but it can be quite difficult to follow through with in a busy supermarket!  To be honest, in this instance, I actually didn't have an issue with Nick going off....... he was asserting his independence and he was very aware of what he was doing (in fact I loved it when he would look to us and give a grin and shake his head for "NO" whenever we wanted him to come back to us!).  It is also a learning curve for Thomas to learn the most effective way to 'connect' with his brother!

The following clip shows us unpacking the groceries onto the conveyor belt.  I am aware that there is not a lot of joint attention or co-regulation going on!  However, the reason I have added this clip is because Nick suddenly discovered that the conveyor belt moves!!  I was delighted to see him make this discovery and I found it fascinating to watch him trying to figure out what was going on (as did the lady behind the till!)  :-) I was also surprised when Nick noticed that there were still items left in the trolley and he took them out.

Have a great week!


She'll be right Jack.......or will she?

As you know, my Nick is quite the challenged chap!  As you also know, there is such a wide range of people that fall under the term Autism Spectrum Disorder!  There are also many co-occurring conditions that may co-exist with the ASD diagnosis.  In one room you can go from having a child like mine to a child who is extremely capable, one who doesn't have any learning difficulties - although may talk the hind leg off a donkey about a topic that interests him and no one else!! 

Quite often I have this internal debate thing going on;
  • would I prefer Nick to be the way he is - as in, totally oblivious to the complexities of human relationships and happy with his lot in life.  
  • OR
  • would I like him to be more aware of life and the complexities of human relationships and all that comes with it!
It's a tough one!!  If a stranger was to look at Nick and see his odd little mannerisms they would know immediately that he was a child with special needs. BUT, if a child has thrown himself down on the floor in the middle of the supermarket because he is so overwhelmed with the people, lights and continuous noise - the folks around him think he is badly behaved and could do with some discipline!  

The general perception of people out there in the real world when confronted with a child like mine is to say "ahh shame" and immediately their expectations of my child are dramatically decreased.  Thank goodness I can cope with that now!!!!

What about the kids who are at the other end of the spectrum, those kids who still have the same core deficits as my Nick but who are much more capable?  What about those kids that realise they are different to their classmate 'little Johnny'.  What about those kids who grow into teenagers and are confronted with so many challenges that they find it extremely hard to cope with what life throws at them................. BUT because they seem 'fine' the general public don't understand them and tell them to "get a grip"

The reason for my ranting is the following story - this has been written by the daughter of a friend of mine.  She is not a typical teenager and I think she is very brave to have written this and to give me permission to use it!  Read between the lines and you will gain some understanding, however, she hasn't gone into the nitty gritty details of how she really struggles! Thank you beautiful girl for sharing your story xx

Asperger’s syndrome

Growing up with Aspergers syndrome has been very challenging. It affects the way you say things and the things you do. It has gotten a lot easy over the years but as a young girl I battled to deal with it. I tend to stick to my routines and most people won’t understand why I get so upset if my routine is changed.

Often I felt disappointed in myself or angry at whom I am, but I am defiantly working on that and I have seen a huge difference. I am learning to love who I am. I am a very moody person, but I have learnt that those who love you will always love those things about you the most.

I used to have very bad anxiety attacks when I was around a lot of people but I really have taught myself how to deal with it, and I don’t seem to mind it anymore. I never thought I would ever be in a relationship but the day has finally come. I am in a very serious relationship and I have been in it for a year now, he is my best friend and understands me more than anyone. I am very happy with someone like him in my life.

I battled a lot making friends when I was in primary school and eventually I started homeschooling, however I think I needed to spread my wings a bit so I made the decision to move back to school, it was hard at first but I began to enjoy the set routine a lot. Work at school has proven to be very difficult and I battle to keep my grades up but it hasn’t stopped me. I will continue to work as hard as I can in all aspects of life and that is all I can ask of myself.

Non verbal COMMUNICATION - part three!

Why do I keep harping on about non verbal communication or communication for that matter? Because.... (and I repeat!!) Nick missed out on this vital piece of development. In Non verbal communication - part two! I posted a few pictures to give you a guide on how we are mindful in our interaction with Nick.  OK, this post is more about verbal communication but it is all part and parcel of where we are at!

I thought it would be a good idea to spend a little bit of time on each picture!  The following picture reduce verbal communication is quite significant for me this week as I met a mum who has a three year old little boy, who has recently been diagnosed with autism.  I was fortunate enough to meet the little boy and got to observe mum and son in action!! (this mum really told it to me straight - she said she knew exactly what I was going to tell her because she had been reading up on autism and she knew it all - I just smiled and let her do all the talking!!)

Anyway, this little boy was a busy wee chap, (has anyone watched the Incredible's and seen the scene with Jack Jack when he is playing with his babysitter, he bursts into a ball of fire and whizzes all over the place and the poor babysitter is a complete mess!!).  Yep, I immediately thought of Jack Jack when I met this little boy!

It was very interesting to note how this mum spoke to her son and with all due respect to her, I really do understand where she is coming from.  When a child is non verbal, the parent tends to overcompensate for this.  I have seen it happen time and time again. 

An example;

Say hello to the lady, wave hello to the lady, say hello, say hello, oh you don't want to say hello to the lady, where are you going now, oh you are jumping a lot, you are acting strange, he has never done this before, are you showing off for the lady, where are you going now, come here, come here, where are you going, oh you want to look out of the window, lets show the lady your slide, come, come, come to your bedroom, lets show the lady your bedroom, lets go on the slide and show the lady how you can go down the slide................. I am not joking - this is what it was like!  

If I could recall what life was like with Nick when he was three years old, I am sure that I was exactly the same as this mum!  Shaelene, perhaps you can remember for me!!!  Over the years I have really learnt to cut back on the unnecessary use of language and to be more selective and specific about what I say.  When I communicate with/to Nick I keep my verbal output short and sweet and I only say it once.................. and I give him time to process and respond. 

There is no way Nick would be able to cope if I continually bombard him with words. He used to take a long time to process information, however, this is much improved. Through being mindful with my verbal output he is able to absorb what is being said.......... and through being mindful about giving him the time to process my verbal output he has the opportunity to think, process and react!  :-D 

I know that 45 seconds sounds like a long time and it certainly can feel like a long time BUT it is worth it - try it and see!! :)


P.S: Did the little boy react to his mother? NO
       Was there any joint attention? NO
       Was the little boy aware of his mother? NO
       Was there any experience sharing? NO
        Did the little boy listen to his mother? NO

A state of being!

Quick post!!!

We all know that having a child with autism doesn't make for a nice easy life.  I will also be the first to admit that if a magical cure were to appear I wouldn't sit back and say "this is my boy and I wouldn't change him for the world".  Bugger that (just had to use Zoe's word), I would be there like a shot!!  I look at my friends and their kids and really desire the normality of their life.

BUT, BUT, BUT.....................

as yet there is no magical cure so I have had to pull up my socks and get on with living.  I have decided to take the positive approach rather than "oh, my life sucks approach".  Sure, Nick has his problems and his life long care is a major concern, (although not one I care to dwell on at the moment!!).

BUT, BUT, BUT...................

he is what he is and THAT'S LIFE!

Non verbal communication - part two!

Finally I get to part two!!

If you have read my previous post Non verbal communication - part one you would have seen from the video clip that Nick is competent at referencing a persons face for information (although his understanding of the subtleties of expression is limited at this stage). 

The following clip is another example of Nick interpreting my facial expressions and body language.  A few things are happening in this clip.  We are still working on creating a simultaneous pattern and he is starting to understand the process.  You can see that Nick is trying to tell me something, although you won't realise what he is trying to communicate!!  He keeps putting his hands on his head (this is his sign for school) - this repetitive gesture is telling me that he is not feeling very competent and he is stressed - he is trying to regain control of the situation!  Perhaps I should have stopped our interaction sooner but I decided to just ignore his gestures and see what happened next.  The last piece of the clip was very rewarding, Nick realised that when he went to put the biscuit in the bowl that I wasn't in sync with him - he then repaired the situation by moving his biscuit back to where I was holding my biscuit!!  This is BIG!  

Please be aware that the reason I put so much emphasis on non verbal communication is NOT just because Nick 'doesn't talk'.  It is also because he missed out on this area of development (yes I know, I am repeating myself!!).

Over the years I have learnt the following points to help in my interaction with Nick and to also guide him to become a more experienced communicator.  Thanks go to Michelle for providing the expressive pictures (although I haven't told her that I am using them in this blog!!!)

 The pictures are self explanatory............ 
to put them into practice is 
another story!  



My fellow blogger Zoe wrote the following informative post on co-regulation!  She couldn't have timed it better because this is what I am working on with Nick!!  Zoe forms her blog around RDI (Relationship Development Intervention) both as a mum of a boy with ASD and as an RDI Consultant in training.  My blog tell the story of Nick and how ASD affects him and our family life.  I will also blog on our involvement with RDI, although it will only be from a parent perspective!  For all the 'correct' information, I suggest you look to Zoe! :)

Most parents don't have to think about co-regulation with their children, however, when you have a kid like mine it is a whole chunk of development that he missed out on!  This is a tough one for my boy and one we really have to practice.  However, because it is a difficult concept for him and I don't want to stress him out, I will (try to!!!) only spend a short time on each interaction (activity) that we do.  I also don't want what we are doing to be task driven - it needs to be about 'us'.

The following clip shows Nick giving me an item from the dishwasher which I then put on the counter.  He is happy and feeling competent with what he is doing, we have a good thing going on.  It took a lot of practice for Nick to understand this pattern - it also took me a lot of time to learn to slow down and guide him!!  It is very easy to treat this interaction as a task, which it isn't!!!  It is all about setting up a pattern and Nick feeling competent with the pattern. It is also about Nick trusting me and learning that I am there to guide him to his level of competence before adding a 'little bit more' of a challenge! It is about co-regulation! 

In this next clip I am still using the dishwasher theme, however, we have changed our pattern.  We are now taking turns to remove an item from the dishwasher.  I am taking a turn and then Nick is taking a turn!  When we first started with this Nick was still stuck on the original pattern of passing me the item, although it didn't take him long to understand the change in pattern. (Next time I am going to make sure that he is wearing his clothes not his pyjamas - that whole boy thing can be rather distracting!!!)

This last clip shows that the pattern has changed again.  This time I am trying to get a simultaneous pattern going.  Now, this is a brand new concept for Nick and he doesn't have a clue what to do!!  You will see that I am holding his bowl and preventing him from putting it on the counter........ I am trying to get him to 'feel and see' that we are both moving the bowls at the same time and placing them on the counter at the same time.  What I got from watching this clip was that Nick was happy to be with me and allow me to guide him.......YAY :-D

Food issues!

The beauty of having your own blog is that you can write what you like, when you like!!  I have been mulling over my next post on Communication (part two) but the subject hasn't really grabbed me this week.  I was starting to worry that I was getting 'writers block' hahaha!!!  Anyway, for the past few days I have been feeling out of sorts and couldn't figure out why - until I woke up on Monday morning with the realisation that Nick's food issues are really driving me quietly insane.   I am sure that Nick wouldn't care if he ate cereal and apples for every meal,  but for me this is a huge concern.

Nick has always been a picky eater and this can be contributed to sensory issues, low tone, the need for sameness, the lack of confidence in trying new textures and tastes and of course the 'control issue'  (I promise that I have never force fed him, therefore, he shouldn't have built up a store of negative memories!).

I took myself off to the Hypermarket on Monday morning to do my BIG shop (very boring - I really must get the hang of this on-line grocery shopping!).  Whilst trawling the isles I was trying to think of anything that Nick may be interested in eating and I came up with............. strawberry yoghurt!  He used to eat this many moons ago, in fact he was extremely capable of taking a pot out of the fridge, peeling off the lid, munching away to his heart's delight and then putting the pot (and spoon!!) in the rubbish bin!  OK, I don't think this particular brand of strawberry yoghurt is particularly healthy but if I can introduce an old favourite then I can think about other options at a later stage :)

Day One
Wish I had videoed this one!!  I told Nick about the strawberry yoghurt, although I waited for him to finish  his lunch before bringing it out.  His body language/non verbal language and signing was very definite, as in NO, NO, NO, get that horrible stuff away from me!  However, with a little gentle encouragement he took two tiny spoonfuls...... and then escaped! 

Day Two
The video speaks for itself!  

Day Three
I placed the yoghurt on the table so that Nick could see it as he ate his lunch! He wasn't upset that it was there, although he did glance at it rather a lot! I also let him play his music during both the previous video clip and this one (I think we both needed something to ease the stress!).  

Life can be so tough for this boy of mine and I have found that if I take the time to guide him gently..... and stretch him just a little bit past his level of competence then he does progress. Looks like I can now add strawberry yoghurt to the menu (fingers crossed!!!!)