It's a tough one when your sibling is a child with special needs.  It's even tougher when that child has autism and doesn't have the intrinsic desire to play, interact and communicate with the people in his environment. It becomes very easy to ignore that child because of the lack of emotional feedback which helps develop a reciprocal relationship. It is also incredibly hard to deal with the fact that the sibling with special needs gets a lot more attention (even though the Mum tries very hard to maintain a balance!!)

For the sake of this post, I asked my teenager a few questions! 
  1. How does it feel when you are out in public with your brother?  "I used to be very aware of public scrutiny and I would get quite embarrassed, although it doesn't bother me any more!"
  2. When you were a little guy how did you feel about your brother getting more attention than you?  "I did think it was unfair and I used to be jealous of my brother getting so much attention, however, I now realize that my brother does require more attention and I am okay with that!"
  3. How did you feel about your brother back then?  "I loved my brother, although I found it hard to cope with him and the unfamiliarity of it all - I didn't know what was wrong and didn't understand why he was the way he was!"
  4. What are your thoughts on your brother and the whole autism experience?  "I accept him for the way he is and how he will never be truly normal/neuro-typical!" "I like spending time with my brother even though he can be a bit of a pest and/or slight annoyance!"
I am not going to write about the problems that my teenager has encountered over the years due to having a sibling with special needs.  However, I must just say that he has grown into a responsible, caring and mature young man....... and I am very proud of him!  

The following clip was taken three days ago!


Traveling in 2011 and a scary 40 minutes back in 2010!

Hi there.  I am back from my trip to London and what a pleasure it was to have some grown-up time.  Even though our trip was also 'autism free', I did at times think of my Nick and his autism. As I dragged my case up and down the stairs of the tube stations, I thought, "there is no way Nick could cope with this".  As I blended in with the crowds at Buckingham Palace, I thought, "this would really freak Nick out".  As I sat down to supper at Jamie's Italian in Covent Garden, I thought, "there is no way that Nick could cope with the people, the noise, the heat from all of these people..... and the NOISE!"  In fact, exposing my kid with severe autism to all that I experienced in London would be very cruel and also a bloody nightmare for the both of us!  Do I feel guilty about leaving him at home? No, not any more - he is happier at home.  I do feel sad that he won't get to experience the excitement of traveling, however, to be honest......... I don't think he will ever realise what he is missing out on!

On the bright side, my boys were delighted to have me back home and I was thrilled with Nick's happy reaction when he saw me, although he did 'sign' for computer within seconds!!  I now need a few days to recover from sleep deprivation (snoring husband and no spare room to sneak off to!) and then I will be refreshed and raring to go! :)

Anyhow, because my brain is only running on around five cylinders at the moment, I thought I would just add a link to this post (you will need to scroll down to page 11 and 12) and if you want to read it you can............ if you don't want to read it, then don't!  :)

To give you some very quick info on the article that you will find ................ Many many months ago, (sometime in 2009 to be a bit more precise!) Jill Stacy from Autism South Africa invited me to give a presentation at an autism workshop to be held in Durban.  I really enjoyed figuring out how to put together a powerpoint presentation (thankfully I had some video footage which was perfect for the presentation, although the sound didn't work on the day!). However, I was absolutely petrified about speaking to a room full of people - around 270!!!!  Anyway, I survived the experience and ended up submitting an edited version to Autism South Africa which then went into their aut;talk magazine.

P.S. ASA forgot to put in my explanation marks and smiley face at the end of my last comment - the supermarket reference was meant to be amusing!! :)

Non verbal COMMUNICATION - part four!

Back again!

If you have read my previous posts you will know that 'non verbal communication' is a biggie for us (especially since the kid can't talk!!).  You will now have some idea of how I communicate with Nick even when there is very little 'speech' input/output from me! Obviously, we don't hold major conversations as Nick's interests are limited AND a lack of understanding communication and all that it involves is one of the main core deficits of ASD!

The following two pictures also work extremely well for us.  Nick is already aware that he can gain information from looking at us and observing our facial expressions and body language. He is getting quite good at picking up on non verbal cues!  Whether he responds to them or not is another story!! :)

Some examples, 
I pull exaggerated faces                           
I shake my head
I might make a little noise                        
I stop what I am doing and wait (getting better at this!!!!)
 (Thank you to M for letting me use these pictures, although I keep forgetting to ask for your permission!!!!)

I love the second picture 'Use declarative communication'.  For those folks who are not too sure of what I am talking about....... Declarative, experience sharing communication is any communication that is meant to share your ideas, feelings or experiences.  "Declarative language does not require a verbal response.  Rather, it invites experience-sharing, and provides an ideal framework for later conversational interactions" - Linda Murphy.

For example,
I love that colour!                                  That table is so dirty!
Wow, that bird up there is noisy!           I need a bowl for this apple!

It is quite difficult to get into this mode of 'speaking'.  We are all so honed into using imperative language.....Imperative communication is any communication that requires a specific “right” answer, or that is making a demand.

For example,
What colour is that?                     Show me the bird
Point to the swing                        Give me the red block

I know that I use a lot of imperatives with my teenager - "So, how was school? What did you do? Have you got any homework? Did you eat your lunch?” No wonder he shuts down and all I get are grunts!! 

Of course, we need to have imperative communication, however, I have cut right back on this type of language with Nick and I generally use around 70% declarative language in all my interactions with him (I need to start doing this with my teenager!!).  Nick responds so well to this and I am often blown away with his reaction. We are giving him the opportunity to think for himself, and over time his problem solving and experience sharing has really come on in leaps and bounds!  

This stuff is all common sense; however, I am constantly surprised at how these very simple concepts are NOT taken into account, especially with kids on the spectrum!

I am taking time out for a while.  I am going away with Allan for ten days!!!  Sometimes, just sometimes..... having a child with autism can be a bit of a drag and oh so consuming! I try to maintain a balance but you know it can be a bit much having to put on a smiley face every day.  I am really looking forward to the trip, spending time with my husband................ and maybe a little bit of shopping!!