From the bottom of my heart!

I have been reading The Autism Experience book by Valerie Foley...... and what a really great experience it has been. Valerie has divided the book into chapters on what life with autism is like and all the bits and bobs that go with it! The before stuff, the in-between stuff, the coming to terms with it all stuff and a little bit of the after stuff! What is so extra special about each chapter is that Valerie has added the different perspectives of friends she has made over the years. Friends who have children (or grandchildren) with autism and some of those friends are also on the spectrum.

It is a book in which everyone has a voice and that voice is listened to with respect, regardless of the 'route' they have chosen to take.  I could relate to many of those stories, although I also shook my head at a few of them - but each to their own! :)  At the end of the day, each parent must choose what they feel is right for their child and their family. (Haha, did I just say that!! I can see a couple of my friends shaking their heads in disbelief because I have generally been quite vocal about what I think is right!!!)

I do think that the book will be a great reference point for parents who are just starting out on the autism journey and also to those who have been travelling the road awhile (just have to sneak in that I would love to see more parents looking at autism from a developmental perspective! sorry, I couldn't resist!!). I found the book easy to read and at the same time, uplifting (but then again, I am an old mum!).  At one point in the book I thought to myself, crikey, these mum's are handling everything so well and wow those kids......... why can't mine be like that! THEN I hit the chapter called 'Worst case scenario'. Yes, here was the reality - and folks, you all need to know the reality!  I know it is really hard for new parents to read this stuff and I am really sorry about that. I recall one mum in the book (child age 4) writing that she would be on antidepressants for the rest of her life - but, she won't be - time heals, we become tougher and stronger and we stop sweating the 'small stuff'. The biggest problem we face (and this is for the mums who have children who will battle to become independent!) is what happens to our children when we die. This is the worst case scenario for me - the rest I can handle (so far!!!!)

I started reading the chapter 'If I could turn back time' and began thinking about my journey with Nick. What would I tell my earlier self? What have I learned and what would I do differently?
  1. STOP, get off that fast train of helping everyone else and joining committees - there will be plenty of time for that later!
  2. STOP, stressing so much about education - it is not going to fix Nick!
  3. STOP, breathe and enjoy my kid..... connect, connect, connect!
  4. STOP, take time out for myself!
  5. STOP, drilling my child........... life must be meaningful and interactive!
  6. STOP, passing my child over to other people!
  7. STOP, filling up Nick's day with school, therapy and more therapy!
  8. SLOW DOWN!!
Shite this list is getting a bit long. Best I STOP now! Am I beating myself up for all those things that I 'should' have done way back then.... a bit, however, I will get over it! :)

Thank you Valerie and all the wonderful contributors. I am sure that your book is going to be a huge success...... and I think you all should do a follow up book in a few years time...... :)


P.S. To the mum who was thinking about starting a trust for her son but has decided to wait until he is 15 - don't wait.......if you can, do it now!

Change is a good thing!

I started writing this post a month ago and completely forgot all about it until I read this latest post by Valerie Foley.  Autism Spectrum Disorder is vast and each child is so different........ for one child who hates change in their life/daily routine/whatever, there is a child who doesn't mind change!  Unfortunately, I have one of those kid's who really battle with change!


A friend of mine recently attended a workshop on Aspergers and she related back to me a comment that was made by one of the presenters.   The delegates were told to keep everything structured and predictable so that the children with autism didn't get stressed. Hmmm, this may sound practical but let's be frank here, the 'real world' is totally unpredictable.  If I keep Nick's routines and everything involved within those routines the same,day in and day out, how is he going to survive when he is thrown a curve ball???

I have also just read an article in a respected publication from the USA and the following sentence hit me - "In fact, according to many experts, one of the hallmarks of autism is the preservation of sameness".  Perhaps I picked up on this comment because I have been thinking about how important it is for Nick to learn that 'change is ok'!!  I do know that I don't want to maintain the 'preservation of sameness'.

We had a major curve ball thrown at us a few years ago in the way of electricity cuts. Nick was very stuck in a regular pattern of coming home from school, turning on the tv and then eating toast for lunch.  Due to the lack of electricity on various days of the week, life suddenly became extremely stressful for the both of us!  Nick couldn't understand why the tv wasn't working and his distress was horrible. The toast story was also a problem - I  tried cooking the toast over the gas hob, however, the flavour was different, and Nick refused to eat it and he didn't understand why he couldn't have his same old toast!! 

He used to freak if I drove a different route home from school. 
He refused to eat supper if I was in the room.
He would refuse to eat if his food wasn't in his regular bowl.
He would only drink one kind of juice
He had to have his favourite blanket on his bed
He would only eat apples at home - never at school!
He would only watch a particular DVD
........... and the list goes on..............

Fast forward to 'now'

We have been working hard with Nick - introducing tiny little changes, letting him feel comfortable with those tiny little changes, adding another tiny little change. He has certainly become more flexible and the wheels don't fall off as much as they used to! Hey, he will now eat an apple at school! Use the loo wherever he may be! So what if the bread has gone mouldy and he can't have toast! (it happens in our humid climate!!) Oh dear, the TV has been stolen - never mind! Tired of listening to Britney Bloody Spear's - not a problem, off she goes and on goes the radio! ........ and the list goes on.........

This weekend!  Friends of ours (who have the cutest little kids) invited us over for an impromptu supper! Yay, we thought! Oh hang on a minute, shit -what about Nick? Our invitation was for 5pm, right in the middle of the Nicky, supper, bath, muti, tv, bed at 7pm routine!  We never take him out at night because we feel we need that time to be 'autism free'.  But this was a Saturday night, no babysitter available AND WE REALLY WANTED TO GO!  Also bear in mind, we were a little bit scared of taking him out, how would he behave? was he going to need our constant attention? what about their dog, the noise, the kids? 

Anyway, we pulled out the trusty old laptop that is only used by Nick (sometimes you just have to provide something for the kid to stim on!!).  He was a bit stressed when we rocked up at our friends house, however, as soon as that laptop was plugged in he was away home and dry! :)  A lovely evening was had by all and I wish I could tell you that it ended happily ever after! :(

By the time we got Nick home at around 9pm, his bottom lip was quivering and he was becoming quite stressed. He became very confused because there was no bath time or tv time. He cried when I helped him take off his clothes, he cried some more when I tried to brush his teeth.  He went searching for that special blanket (which is very rarely used). He cried as he climbed into bed and he kept making the gesture for 'help'.  However, every time I went to give him some comfort he pushed me away and waved bye.  With the heaviest of heart's I said goodnight and closed his bedroom door (also part of the routine!)

Sadly, poor Nick was also upset last night.  He was sleep deprived from his night out and his emotions ranged from having the giggles to tears rolling down his cheeks.  Again, I had to say goodnight and close his door.  As much as I wanted to help him I couldn't because he didn't want me!

Will we do this again........... Yes!

Tonight; Nick happy to be in his most favourite place in the world 
(2nd favorite being school)

OK, I know he is also watching tv but come on folks, it is only a tiny little bit before he heads off to brush his teeth and go to bed!! ;)

An easy day that ended in water!

It's Saturday and we are having a very chilled day at home!  The only problem I have is the lack of space in my kitchen ......... and they come in the size of three very tall teenagers.  Not sure how I am going to go about 'doing stuff' with Nick with all the interruptions, but hey, Nick seems to fine so far!

Anyway, I thought today would be the the perfect opportunity to spend some quality time with Nick and I have a couple of objectives on my agenda!!
  • Our RDI assignment is 'contingency'.  It is all about me taking a turn and then Nick taking a turn.  However, I don't want him to do the same thing as me and I need to check that he is watching me but keeping within his role, even though it may be a little different than mine! "We don't want him to do the same thing you are doing...but it is contingent on what you are doing" We started this a couple of weeks ago - click here if you missed my last post! Contingency is a difficult concept for Nick so we are just going to carry on with some basic interactions around the house. We are also going to keep those interactions short!

  • I need to keep my mouth shut (could be difficult!!) and be mindful about the type of communication I use with Nick.  I want him to have the opportunity to think for himself. I also want him to anticipate what is going to happen and to repair actions if needed! Therefore, I have to try hard not to prompt him in any way and I must be patient and wait for him to realise what his role is/the pattern of the interaction. So......... here we go!

Clip one: I am going to put a cushion on the table and I want Nick to put it on the sofa. You will see how Nick watched what I was doing and he was aware that when I paused the action he needed to think about what he was to do next.  I didn't talk! I didn't gesture! All I did was wait!!

Clip two: We are both stacking the dishwasher, although I am putting in the large utensils and Nick is stacking the cups. Nick still hasn't 'clicked on' to putting the items in carefully so I gave him a little bit of guidance. Again, I didn't say anything to him and he had to think about what was going on.  Note: he was a little distracted by the boys!

Clip three:  This one didn't go so well, however, I am still adding it in with this post BECAUSE it shows what happened when Nick became out of sync with the pattern.  I also didn't 'speak' during this interaction although I did put my hands to my face to show "oh no" and I also held out my hands in a gesture that meant "huh, what about me"! (next time I won't make any gestures and will wait to see what Nick does!!) Towards the end of the clip Nick stopped what he was doing, went back to the CD cases, took one from the pile and then gave it to me. Nick was aware that I was involved and he tried to repair the action - this is great! :)

Unfortunately our chilled day got a bit hectic and I wasn't able to continue......  The rain came down, we discovered that our downpipe was blocked, the veranda filled up with water and the kitchen started leaking!


Chores but not really chores! :)

I have to tell you....... I have seen a noticeable change in Nick over the last five months. I have been spending a lot more time with him and we have been working on specific activities (I prefer to call them 'interactions' because what we are doing together is not about the activity/task - it is about what is going on between us!).  

I have to be honest and say that our 'interactions' are not nearly interactive enough .......... YET!  

You will see from the following video clips that Nick looks like he is doing a chore BUT take note on how he stays with me and looks to me for information - he is letting me guide him. He knows that I am there for him and that I won't overwhelm him with demands. Five months ago he would refuse to move off the couch and when he did eventually move his butt, he would be stressed and continuously 'signing' for any comfortable distraction (i.e. the computer). Fight or flight!!!

To go back a step;

We have been working on establishing patterns and we are aiming for Nick to be an active participant. My normal reaction to the introduction of a new pattern goes something like this; "Shit, Nick can't do that and this is going to be so hard, how am I going to be able to do that with him, what sort of interactions can I set up which enable us to work on this particular pattern - fret, panic, sigh!!  Fight or flight!! ;)

However, to cut a very long story short (and I am very aware that I am not giving you much information!) we are doing great! :)  I am learning how to give Nick the time to process information and the opportunity to think for himself, although adding support when I think it is needed. Nick is learning to trust me as his guide - and this evident in all our interactions. 

We have just started a new pattern (and this is the hardest one yet!!). I take a turn and then Nick takes a turn. However, we don't take the exact same turn. I want Nick to take note of what I am doing but I also want him stay within his role! Because of the difference in what we are doing - can he stay with me or will he become dis-regulated? 

The video clip below shows the first time that I introduced the new pattern using the dishwasher! Nick is unsure of what is expected of him, however, (and this is huge) he stays with me. I am scaffolding the interaction here and there, although he does pick up on the pattern quite quickly! Not enough "wow, interaction" going on - but it's good enough for me today!

Still sticking with the dishwasher theme (in fact it took us all day to unstack it!!). In the next clip you will see that I have made a little change. We still have the same roles, although this time I am putting the dishes on the centre island and Nick is required to put them on the bench above the dishwasher.  Bit more scaffolding involved but look........... he gets it! :) AND, he is not bothered that I have made the change (go Nick!).

In this final clip (filmed a couple of hours after the last clip!) I have thrown Nick a huge curve ball. I am now requiring him to help me put the dishes into the dishwasher. Nick has never ever done this before!! OK, I am being a bit too talkative and perhaps I should be giving him more time to figure out what to do, but I LOVE the fact that he is coping really well, and around 1:17 he actually laughs!

I really enjoyed putting this post together.  I know that it is a bit rushed and I have only given you a brief explanation of what we are doing. Look, it's not perfect and we both still have a way to go before we 'get it'.  However, I am happy with the results because it is our FIRST time trying the new pattern using the dishwasher.  I can also see how far Nick has come in a short time and I am chuffed at what we have achieved.  Will do a follow up clip in a few weeks! :)


Birthday Ramblings!

It was my birthday and I took the boys to our local coffee shop for my daily cappuccino fix.  Nick was not happy, he didn't want to be there and he gave me a few good strong pinches (a new thing!).  This really bothered me and I spoke to him in an extremely cross voice "Nicholas, don't pinch me, I don't like it". He knew exactly what I meant because he then stroked my arm very gently!

Thomas looked down at the table with a sad expression on his face and I gave a huge sigh........ 

"Oh, how wonderful it would be if our life was normal" to which my big boy replied "YES!" We both spent a few moments mourning what we have lost. But then as quick as a flash we looked at each other and agreed that "such is life and we must just get on with it!"  

We do have pity parties, although they are becoming increasingly less frequent and they don't last very long! Time brings acceptance and acceptance brings peace within. Acceptance doesn't mean that you stop doing all that you can for your child or lowering your expectations of your child. Acceptance doesn't mean there will never be another pity party........... the real world isn't all sweetness and light! For me, reaching acceptance has removed the huge burden that I felt I was carrying, the sadness and despair that engulfed me at times. Acceptance has enabled me to move on with my life, and to start bringing back all those things that I lost, while going through the process of coming to terms with having a child with special needs. Acceptance also means taking the time to really enjoy my child and celebrate any achievement, no matter how small it is.  Acceptance means looking on the bright side (haha!) and finding humor in any given situation.


Some light hearted moments......

Nick pushing a dodgy trolley in Spar and getting stuck in the groove of going around in circles - while we (me, Allan and Thomas) laughed so hard that we had tears rolling down our faces! (last weekend!)

Nick's obsession with putting cream on scratches, bruises, bumps and itches......... this took on a new meaning when he took the cream to his dad, pulled down his shorts and indicated that he needed cream on his (obviously itchy) balls!!!!!  Puberty folks, puberty! I still chuckle at this one :) 

Nick creating his own sign for 'farting' and how he has to tell us every time!


It is a bit of a bummer not being able to do all that 'normal stuff' and we do miss out on a lot! However, I have met some really awesome people over the years and made some special friends.  Having friends who share the same experiences make the road easier to travel........ 

Now I just have to come to terms with getting old!!!

Blogging over at Zoe's place!

We are spending the weekend at Mbona - the rain has set in and the mist is so dense that it is not possible to see the dam!  My crazy husband is out there somewhere - clocking up his kilometres in preparation for the Two Oceans marathon!

Last week I was invited to write a post for an RDI friend of mine.  We linked up a couple of years ago and although our boys with autism have the same issues, they are also different!

Just in case you didn't see my facebook post about my quest spot on Zoe's blog!!

Click on the following link!

Time to get out of my pyjamas and do something with my kids!